Joe Martuscello Update

Family Update

2007-03-16T14:38:00.000-04:00

It's been a month since I have posted and thought that it was time to create one last post, and say goodbye to this method of communication.

Our journey through Joe's illness was rough. Although the outcome was the worst possible that could have occurred, Gina, Tom and I are grateful for those of you who have not only followed our course, but were the wings that kept us afloat. As I have said so many times, words of thanks are simply not enough to fulfill all of the wonderful random acts of kindness bestowed on all four of us. I think back over those 11 months and ask myself hundreds of questions - I know that I did everything that was in my power to help find a cure for Joe - I hope that I kept all of you up to date on our path - and that my communication was clear, honest, albeit a tough one to deliver. I know that you all realize how hard it has been for us since Joe has died.

How are we? That question is asked of me daily, and I usually answer - we are hanging in there. Life certainly has thrown us a curve ball, but as a family we were strong, and as a family we are still strong. None of us are sleeping well - and we all spend a good part of our day with tears in our eyes and a weight in our heart. While Joe is not with us any longer physically, we feel his presence in our every day life - and we grieve for his loss. Many have said that time heals the wound - it's been 3 1/2 months and time has done nothing to heal any of us! Many say that it was a blessing. To me, a blessing would be to see him sitting in his chair smiling at me asking what's for dinner! But, life has taken us in a different path - a new path - and we are gingerly finding our way through the maze. Joe left me with 28 years of memories and 2 wonderful children. We, throughout our marriage, nurtured a family in Rochester and gathered oodles of great friends - both groups of which have been so wonderful. 780 people came through Joe's calling hours. 780 people who offered their condolences to us - 780 people who cared. I am overwhelmed by the generosity & outpouring of love from these people in my life.

At Joe's service I spoke of great tragedy and how it brings out the best in so many people. We, unfortunately, since Joe's death, have also seen it bring out the worst in others. For that I am tremendously saddened.

But, as we forge ahead toward life, we are following a set of plans that God has laid out for us. I am taking the time to do some much needed house cleaning - Joe was the proverbial pack rat - and it's been both wonderful and depressing to go through this personal items. It is a bit of a cleansing experience though - and I believe I am growing with every effort. I do plan to sell our house and move closer to work and my sister once Tom graduates from high school. While I dread moving, the reality is that the house and yard is just too big for me to take care of by myself!

Gina is concentrating on finishing up her junior year - will be home in mid May for work and another session of classes to complete her major course work. Her goal is to take the GRE's and get into grad school in either RIT or U of R while working at Unity Health once she graduates from UB. We are so proud of her efforts.

Tom has finished his Varsity basketball season -while the team's record certainly did not reflect their level of skill, Tom was voted MIP - Most Improved Player - for the season. Gina, Blake and I were so proud of his accomplishments, and yes, I cried at the banquet! He is currently running Varsity track and practicing with his AAU basketball team and Travel soccer team. He'll be a senior before I know it.

Many groups of people have still been supportive in our remembrances of Joe and we are grateful for the love and support of you. The Rochester Rhinos are working on dedicating a game in Joe's memory this summer.

As we travel this road we are saddened by other people in our lives who are enduring cancer or other life threatening issues and I would like to ask for a prayer for them all:

My Godfather - who is still battling melanoma. He's a brave warrior and such a wonderful influence in our lives.

Greg Sengillo - currently battling Leukemia - Greg went to high school with my sister Toni and cousin Paul - his sister Donna Jean and I were inseparable for many years. His parents were like second parents to me. He is in the hospital battling complications from his stem cell transplant.

Scott Anderson - still battling brain cancer - he is changing chemotherapy treatments. How wonderful if a miracle cure could come his way - there is no one more deserving.

Joe Gentile - this gentle man who Joe and I have known for 25 years has recently passed away - suddenly - leaving his wife of 41 years Gloria - wonderfully giving people who touched our lives, and the lives of Gina and Tom with unconditional love. He will be greatly missed.

A Good Man - By James Whitcomb Riley
A good man never dies -
In worthy deed and prayer,
And helpful hands, and honest eyes,
If smile or tears be there;
Who lives for you and me -
Lives for the world he tries,
To help - he lives eternally.
A good man never dies.

Who lives to bravely take
His share of toil and stress,
And for his weaker follows' sake
makes every burden less -
He may, at last, seem worn -
Lie fallen - hands and eyes
Folded - yet, though we mourn and mourn,
A good man never dies.

So, with that I leave you and this blog. How wonderful of Paul to put it together for me. It's so like him to think of something for me, before I even know I need it. Friends............

Love and peace be with you forever.

Vicki, Gina & Tom

Coaches vs. Cancer donation

2007-02-08T10:07:00.000-05:00

Varsity Coaching Staff, American Cancer Society Representative, Varsity captains(Caleb, Troy, Tom, Ben, Doug), me, Varsity Coach and Cheerleaders.

Tom #14 - point guard!

Last night the Spenceport Boys Basketball team along with the cheerleaders presented a check to the American Cancer Society from donations received during their Coaches vs. Cancer tournament in November. The check was given in memory of Coach Chow and Joe. John Pelin, our athletic director asked me to present the check along with the players. Attached is a picture of us last night. It was heartwarming and sad. Gina drove home for the celebration and Blake, Paul and Maureen joined me in support.

I spent some wonderful time talking wtih Donna Stultz during the game. Thank you all for the support that you and your family and friends have given to the Rob Stultz memorial fund. She said that with all of the donations in Joe's memory, they will be able to continue their scholarship fund. Thank you Donna for a wonderful talk. You're right - the pain doesn't ever go away!

Gina, Tom and I are working with the jazz band director to donate a musical instrument in Joe's memory to the Jazz band at Spencerport. We plan to put a plaque on the instrument so that in all of the years following, Joe will be remembered each and every time a child picks up the instrument to play.

Paul & Maureen are helping me set up a CD player and music center in Strong's 6-3400 unit so that the patients there can enjoy the gift of music during their difficult hospital stays. Joe's Dixieland music CD will be among those we donate. Don Cameron sent Joe a CD each month that he was ill. I plan to donate those with our love and thanks for his friendship.

Joe and my headstone should be placed at the graveside in April. I am anxious to have it put in place to honor and mark his (and my) resting place.

Gina will turn 21 on the 24th of February! It will be a bittersweet day without Joe. She plans to come home for her birthday, but I am unsure of our plans as of yet.

Tom will be traveling wtih the school jazz bands and swing choir to Orlando at the end of March. Gina and I plan to fly down to Florida for a long weekend to watch them compete in their jazz festival. He will be home for a week and is taking off to the Mexican Riveria with the Kwi's for Spring break! It will be a wonderful vacation for him.

This summer Tom will play AAU basketball with the Renegades and Travel soccer with the Spencerport Soccer club and work reffing soccer. There are several wonderful tournaments planned for both teams. Gina will play soccer on the women's team, work at Unity and ref soccer. She will be taking a physics course at GCC over the summer. We hope to finally get on Nanette and Joel's boat this summer for some R&R and meet our newest great niece.

Thank you all for your kind words and support. My family and friends have never let me down and have been there for both Joe and I throughout his horrible illness, and are now so supportive through our grief. Words of thanks are never enough!

We love you
Vicki, Gina & Tom

Memorial Icon for Joe

2007-01-12T07:29:00.000-05:00

The Spencerport Soccer club has created an embroidered icon to be placed on the sleeve of the home and away jerseys for all of the travel players! This memorial icon will be worn by 400+ players at each and every game all summer. What a wonderful tribute to Joe. While he is gone, he is missed and remembered by many of us here in this community. It's a testiment to what Joe believed in and worked for since moving to Rochester 25 years ago. So, while Tom and Gina are out there playing soccer this summer, their dad will literally be on their sleeve - and the sleeves of all of the children - still teaching and guiding them through the game he so loved.

The outpouring of love and support that has been given to Gina, Tom and I is tremendous. Words cannot express our thanks in helping us through this very, very difficult time. Thank you.

I have ordered the headstone for Joe and I and it will be placed on our gravesite in early March. While seeing my name freaked the kids out somewhat, it's comforting to know that I will rest beside him, as I have walked beside him for the last 28 years.

Do not walk in front of me,
I may not follow.
Do not walk behind me,
I may not lead.
Just walk beside me,
And be my friend.

Love,
Vicki, Gina & Tom

Blog reading

2007-01-08T09:27:00.000-05:00

A number of people over the weekend encouraged me to look again at the blog and see the notes posted. I was not aware that many of you still go to the blog to read it - a way to remain close to Joe. What a wonderful tribute to my husband.

I keep getting asked - how are you and the kids doing? All I can tell you is that we're taking one day at a time. There's no greater love than what we had with Joe - and to lose it - well - a part of all of us died on November 24th Parts of us that will never feel again.

Some days are harder than most - and the other days we go on about our lives thinking of Joe. For me, before I make a decision I ask myself what would Joe say to do? This helps me a little, sometimes I agree, sometimes I don't - which was normal for the last 24 years!

Tom had a few rough days last week when he saw his friends' dads pick them up from basketball practice. He came home crying and really missing his own dad. I don't know what words I can give him to comfort him, just to know that we're all feeling the same way.

Gina had a screw removed from her knee last Friday afternoon - she's doing OK - laid up on the couch for the weekend plus. The screw was unscrewing itself (yes, we're teasing her that she had a screw loose) and was causing pain. The surgery was toted as being minimal - I think it's a little more than she bargained for - but she's doing OK - some pain which is getting better. The screw is 2 1/2" long - yes - she has it! She'll be on crutches for a couple of weeks. She starts school on the 16th. How quiet the house will be when she's gone. I know that our loss will be amplified without her presence.

Again - thank you all for your love and support. On Thursday it will be one year since his diagnosis. I still can't believe he's gone. Most mornings I just sit and stare at the empty bed and the office, hoping that he is OK. I know he's with us- we've had signs of his presence - but we miss his smiling face so much.

My parents put a tribute in the newspaper on his birthday and I put one in on Christmas Eve. For those of you not getting the D&C here it was:

You never said I'm leaving
You never said Goodbye.
You were gone before we knew it
And only God knows why.

A million times we've needed you
A million times we've cried.
If love alone could have saved you,
You never would have died.

In life we loved you dearly
In death we love you still
You hold a place within our hearts
That no one else can ever fill.

It broke our hearts to lose you
But you didn't go alone
Part of us went with you
The day God took you home.

Love
Vicki, Gina & Tom

Merry Christmas from Heaven

2006-12-20T08:46:00.000-05:00

My good friend Julie gave me a beautiful Christmas ornament today, with the following poem. Thanks Julie - you truly are amazing.

I still hear the songs
I still see the lights
I still feel your love
on cold wintery nights

I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers

I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd

Keep trying each moment
to stay in His grace
I came here before you
to help set your place

You don't have to be
perfect all of the time
He forgives you the slip
If you continue the climb

To my family and friends
please be thakful today
I'm still close beside you
In a new special way

I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year.

copyright 1990, John Wm. Mooney, Jr

Interesting how he has the same initals as Joe, written the year Tom was born.

Thank you for all your cards, letters and support. These last weeks have been pretty rough for Gina, Tom & I. We have visited Joe's grave several times and his headstone, and mine, will be in place in March.

Tomorrow is Joe's 47th birthday. Please do something with him him mind.

With love and many tears
Vicki

With heartfelt gratitude

2006-11-28T07:25:00.000-05:00

Yesterday was a very moving and spiritual day. For those who attended the graveside ceremony with the US military honor guard may not have known that the gun salute we heard just after "Taps" began to play by the bugler was not planned. Vicki had elected to not have the salute at all. Yet, the three shots rang out in perfect sequence to the beautiful melody in the distance. Vicki reminded us that so often this was the weekend Joe would go hunting. Guns were certainly one of his passions. I choose to believe that it was just his little way of reassuring us that he is up there watching over us.

Maureen and I are forever grateful for the opportunities we had to walk with the Martuscello family on this year long journey. So many people approached us after the funeral mass with good wishes and gratitude. Over and over we heard how lucky Vicki and Joe were to have friends likes us. No.....how lucky we were. Our circle widened, as Fr. Bob puts it, to include so many new friends; friends who shared a common love and now a common grief. Many of you asked for a copy of Vicki's eulogy and my comments at the funeral. With her approval, we share them with you here, part of our lasting memorial to a man whose limitless love for those around him is matched only by the permanence of his memory in our hearts.

Good morning.

A few years ago, a friend of ours wrote a wonderful eulogy about his son. I still admire Bill’s strength in sitting down and gathering his thoughts then. And today, I will try to draw from some of that strength that Bill and Donna have and talk about Joe. I should be the one to talk about Joe; after all, I lived with him for more than 20 years, but alas I have deferred this job to Paul. He’s a much more eloquent speaker than I, and frankly, I don’t know if I can get through it. So thanks Paul – you have been a wonderful friend to me for more than 30 years.

Today we celebrate Joe’s life. While the end of his physical life has occurred, there is much to celebrate as he left an impression on each and every one of us here today– and if we can all keep his memory alive, then Joe will live within us all forever. He’s not with us physically anymore. This fact is heartbreaking – but as I said – today we will celebrate his life.

We all know that Joe has a wonderfully diverse character – he not only was a husband and father, but a son, brother, friend, employee, boss, coach, athlete, musician and referee. 46 years is much too short of a time on this earth, but Father Werth told me that in Joe’s 46 years he accomplished all that God wanted of him. It was time for him to go home. Perhaps Joe’s illness was the start of a journey for us all – perhaps his last year on earth was to allow us all to travel this journey – personally and together – for our life’s fulfillment of what God intends.

Many of the kids sitting here have their driver’s license because they graduated from the Martuscello School of driving! Many of the kids sitting here today are the great soccer, basketball and baseball players because of Joe’s patient and consistent coaching that he did from very early on. Joe’s infinite patience was evident when Richie thought he could kick the basketball from the back of the yard and get it through the net. It succeeded in getting through the picture window! When he finished coaching, he moved to reffing. I don’t think that anything Joe ever did satisfied him as much as reffing soccer. For awhile we didn’t recognize him if he was not wearing stripes! Gina, Tom and I used to tease him unmercifully as he was seeking out games to ref when he was not scheduled. He believed that reffing a game was much more than just being there on the field with the kids, but it allowed him to continue to teach, inspire and ensure that kids learned what he so wanted for them all – teamwork, loyalty, strength, fair play and courage.

Joe was the guy that everyone called for help – to move furniture, replace windows, and fix things in the house. He and Bill spent a weekend removing their old hot tub for replacement – Toni has wonderfully captioned pictures of Joe –saying she thought he enjoyed the demolition a little too much!

If he was not reffing soccer one only had to look in the basement and listen to his rich voice fill the house as he sang and played the bass. I think that the kept with the bass for many reasons – the biggest being that it gave him a sense of peace. He helped form the very first elementary school jazz band when Tom was in 4^th grade. I sat there pointing out to the other mothers that “my other child” was the tall one in the back! Papa Joe’s Crawfish Stew band plays Dixieland music – an interesting combination of people form this unique band that began to help cub scouts go to camp. The band evolved into a passion for them all, and a friendship developed amidst their differing backgrounds.

Joe’s degree is in teaching technology – shop class. He never pursued the masters’ degree that he wanted and never pursued the teaching job. He got into manufacturing early on in his career and found satisfaction in making things, learning and growing with the various companies he worked for. He found a home at Caldwell Manufacturing and was the happiest there in all of his years working. He found not only a great job, but great friends. Joe worked his magic with wood in building things around the house –decks, furniture and countless school projects were created in his work shop. Joe’s multi-talent also lent to sewing. I think he bought me a sewing machine early on so that he could use it! He made covers for the pool table, all of his band gear and was the driving force in making clothes for the girls lacrosse bears Gina’s senior year. Who would’ve guessed?

What began as a kidney stone turned into Cancer. Cancer in our family? Joe has Cancer? He never even gets a cold! It took us a long time to get our bearings and fight this beast head-on. But fight we did. None of us believed that cancer would take Joe from us. It was always foremost in our thoughts that he would beat this – after all, he has tackled a lot in his life and won. We all took part in making sure that we had the latest and greatest treatments – the best doctor for the disease, and the best care we could offer Joe. No one knows the hours that we sat just watching him through a tough spot – but being thankful he made it through successfully. Courage and strength became our mantra. There was no time for whining and complaining.

Maureen’s persistent quest for a clinical trial proved to be the best medicine that we could have hoped for – with the best doctor around. The support came to us in many forms – from teaching Gina and I how to be make-shift nurses to countless fund raisers to keep taking Joe to Houston to dinners delivered weekly to cards and letters (we have hundreds) to phone calls to prayer to a rotating schedule of visiting nurses and aides. Nothing was too small. All of the support has helped us to get through this trial in our lives a little stronger and a lot richer in spirit and faith. Alas, none of the treatments worked to cure the cancer growing in Joe, but he touched many lives by enduring the trials. Perhaps, someday, someone will be cured because of the treatments Joe tried. I think he would like that.

As I sit here today I am filled with much emotion. Grief and sadness have just begun to hit Gina, Tom and I, however, we are also filled with gratitude and thanks. They say if you have one good friend in a lifetime you are blessed. We are blessed a hundredfold. How lucky we have been this past 23 years. Our lives have been rich & full. When one thinks of Joe, immediately loyalty and courage come to mind. Then beauty, persistence, humor, patience, kindness and we can’t forget barking spiders! Each of us here today have a memory about his life – and I ask that you keep it alive. You’re never truly gone if you’ve influenced a life. I believe Joe will live forever in us all.

Cancer touches not only the patient and the immediate family, but the surrounding community as well. So many people have been an unending pool of support for us all. The days were easier with you all there. Your continued strength has been my rock to lean on. The blog started out as a way to communicate and chronicle to our friends and family what was happening with Joe, and ended up being almost a journal for me. Many people tell me that it reads like a story – it was a wonderful avenue to thank those around us - celebrate our successes - and share our grief at the cancer’s growth. The Martuscello march against cancer was a resounding success and Joe was able to reap the strength vibrating from the room. Its presence was upbeat and fun, allowing Joe to see and talk to people he knew - it allowed people to say goodbye. It was a tribute to Joe’s life. Our heartfelt Thanks to Brian, the band and the team of folks who organized it. The team took minimal direction from me and ran with a night filled with joy, laughter, good friends and love. My sister, my friends, thank you. You are truly amazing, remarkable people.

They say that great tragedy brings out the best in people. While we were blessed with 2 children of our own, the extended family that was lent to us has been a source of great strength, joy and love. So, to Franco, Jake, Richie, Steve, Louie, and Richie – we love you for your unconditional time and support to Tom and to us all. Gina has been blessed with 7 wonderful brothers! Your positive upbeat attitude and winning personalities have enriched our lives. You made the work around the house and yard fun. I would be remiss to not say thanks to your parents for raising such wonderful boys who we are lucky enough to share.

My sister and parents along with our close circle of friends were never far. While the Andersons are fighting Scott’s own cancer, our battle never strayed from their hearts and minds. Kate continues to be a joy in our lives. Blake was instrumental in almost everything – a brother to my adopted sons - and we are blessed that he has come into our lives. Paul and Maureen, Lynn & Tim – There are no words for the continued support that you gave to us from day one. We linked hands last December and vowed to fight this together. And fight we did. How lucky we are to have you.

Many others have touched our lives in so many ways. Family, friends, neighbors, coworkers and colleagues have just come out in droves to support us. Words of thanks just don’t seem enough, but your presence sparkles our lives.

Gina, Tom and I want to thank you all for coming. Please join us for a luncheon at The Brook House on Ridge Rd. after the ceremony at the cemetery. As we move on with our lives, I wish to leave you with a thought - sent to me by my Godfather, who is an inspiration in my life:

I may never see tomorrow

There’s no written guarantee

And the things that happened yesterday

Belong to history

I cannot predict the future

I cannot change the past

I have just the present moment

I must treat it as my last

I must use the moment wisely

For it soon will pass away

And be lost to me forever

As part of yesterday

I must exercise compassion

Help the fallen to their feet

Be a friend to the friendless

Make an empty life complete

The unkind things I do today

May never be undone

Any friendships that I fail to win

May nevermore be won

I may not have another chance

On bended knee to pray

And I thank God with humble heart

For giving me this day

To Joe – my husband and my friend – ciao – Te Amo - until we meet again.

If I can ask your patience for just a few more minutes, I would like to share some thoughts of my own.

Hey buddy! That’s the greeting Joe and I always gave each other, whether on the phone or in person….Hey Buddy!

The blessing of my life by Joe started actually many years before we even met. I was truly blessed in the Fall of 1974 as I began my Freshman year in high school. That was when I met Vicki for the first time. It was the beginning of one of the most rewarding relationships in my life. Our friendship grew stronger each year and we made every effort to keep it alive as we moved on to college in the Fall of 1978. Frequent letters and holidays visits kept us well-informed of each others trials and tribulations. It was for a sorority holiday dance a year or so later that Vicki had invited me for another visit to her college. However, a couple of weeks before the event I got the call. You know the call…Paul…I met this guy. Suffice it to say, the guy that took my place at that dance is the guy we honor today.

A few months later was when this blessing began. Joe and I met and hit it off right away. We shared so many common interests that having a good time around him was effortless. As the years passed, the relationship between he and I and Vicki and Maureen grew stronger and stronger. We married months apart and found our lives permanently intertwined. We began as series of traditions that have carried on for more than 20 years. In October of 1984 we went to Kelly’s apple farm to pick apples and get fresh donuts. That was when we announced to Vicki and Joe that we were pregnant with Tim. The following year, at the same place, they announced that Gina would be born the following year. More traditions followed like the annual Irondequoit Rotary pasta dinner held every November at Bishop Kearney High School. This year we got our dinners to go and shared them with Joe during his last stay at Strong.

I could go on for hours about all of the wonderful times that we shared with Joe. Your presence here today is testament to the fact that Joe was the focus for good times for so many of us. But today, its not the laughs, not his ability to fix just about anything, not his unwavering willingness to help anyone in need, but his uncanny ability to inspire those around him that I choose to honor.

Knowing Joe has made me a better man, a better father, a better citizen, a better partner and a better friend. After spending a great evening listening to Jazz at last year’s Rochester Jazz Festival with Joe, I actually tried to come up with a way that he and I could form a little jazz quartet. I didn’t think that finding a drummer or piano player would be too difficult, but I just couldn’t figure a way to work the only instrument I could play, the tuba, into the group. Joe was game. He wasn’t one to back down from a challenge. As silly as the thought was, it was the thought of being able to spend even more time with my buddy that made me think so seriously of it.

Sharing his love of the world around him was one of Joe’s greatest gifts to me. Whether it was billiards, jazz, computers or any of a number of other hobbies we shared, I learned so much from my friend.

Joe’s legacy is so much more than the things he built, the physical things he has left for us, it is the memory he has left with us of what it is to be a good man, a truly good man. Joe’s effect on the young people he encountered over the years will resound for many years to come.

It may not be tomorrow or even next year, but in the years to come, the young people who were influenced by Joe will draw from what they saw demonstrated in the way Joe lived his life.

It is very difficult to teach integrity, loyalty and commitment. Yet, these are just a few of the virtues Joe has imbued upon so many of us, both teen-agers and adults.

There is a great void in my heart which has grown steadily since January. I am grateful, however, that this void is still just a bit smaller than the joy of my friendship with Joe.

I want to share with you part of a letter that Maureen and I received from Dr. Kohli, Joe’s oncologist at Strong.

Joe fought a valiant and extremely courageous battle. And he was never alone. All of you were with him all through out.

Some of the things they don't teach us in cancer treatments we occasionally are lucky enough to learn from our patients and their loved ones.

I learnt from Joe, while I tried to help him, virtues of courage, valor, persistence, and how to climb the hill with a hope in one's heart, a prayer on one's lips and a smile on one's face even when a dark cloud looms over one. I learnt from seeing his family and friends, the effect a single human being can have on his fellow humans and the undying strength of their love for him in return.

I can only consider myself fortunate that I met Joe and he gave me the opportunity to learn these lessons of life. On this journey in life, I shall remember these gifts that he and you all have given me. For that I thank you all.

Hey buddy! Rack up another game of nine-ball. I love you.

Readings at Joe's service

2006-11-27T18:26:00.000-05:00

Many of you asked for a copy of the reading that Anna Potter read. This particular piece was read at a very close friend of our funeral- Brad Girvin - he was so quickly taken from our lives after suffering a stroke. It was also read by David Pritchard at his father's funeral and he was the one who found it for me. It meant a lot for me to have Anna read this for she is a true friend.

In the memory of our father (an
excerpt) by CW Leadbeater

For that is the real truth

Man is a soul and has a body
The body is not the man
It is only the clothing of the man.

What you call death, is the laying aside of a worn out garment
And it is no more the end of the man than it is the end of you when
you remove your coat.

Therefore, you have not lost your friend
You have only lost sight of the cloak in which you were accustomed to
seeing him.

The cloak is gone, but the man who wore it is not.

Surely, it is the man that you love and not the
garment

The last few days have been incredibly difficult for us all but we have come
together and held each other up. For my family and friends, I am
eternally grateful.

With love and grief
Vicki, Gina & Tom

Sunday's newspaper listing

2006-11-25T10:08:00.000-05:00

Joe's obituary will be in the paper tomorrow. Here is a copy of it for those needing to make plans:

Joseph William Martuscello Jr., age 46, after a courageous battle with Renal Cell Carcinoma. Survived by wife Vicki (Rotondo), daughter Regina Teresa, Son Thomas Joseph, mother Camille Fisher, father Joseph Martuscello Sr, and parents-in-law Victor and Janice Rotondo. Sisters Rosalyn (Charlie) Carroll, Roxanne (David) Martyniuk, Nanette (Joel) Scogin, Yvonne (Fred) Kovits, Michelle (Jonathan) Miles, Brother Bill (Christine) Martuscello. Sister in law Toni (Bill) Zeiser, Godchildren Jamie Bellave & Robert Siegel, confirmation sponsor of nephew Bryan Carroll, dear friends Paul, Maureen, Tim and Lynn Cassarino, Kaitlin Anderson, Blake Landry and Dan and Diane Campbell, 5 nieces, 12 nephews, 3 great nieces and 5 great nephews. Many aunts, uncles, cousins, neighbors and friends. Joe was employed at Caldwell Manufacturing Company, a referee for NYS West Soccer Association, previous Cub Master for boy scouts pack 165 and a member of Papa Joe’s Crawfish Stew Dixieland band.

Calling hours Sunday, November 26th 3-7pm at Dierna Funeral home, Culver Rd, Irondequoit. A memorial mass will be held on Monday November 27th at 10 am at St Jude’s church, Lyell Ave, Gates with Father Robert Werth presiding.

In lieu of flowers, donations can be sent in Joe’s memory to the Rob Stultz Memorial Fund, 71 Lyell Ave, Spencerport NY 14559.

Joe's plans

2006-11-24T14:44:00.000-05:00

Calling hours are from 3-7 pm on Sunday November 26th at Dierna Funeral home on Culver Rd in Irondequoit.

Mass will be at St Jude's parish on Monday November 27th at 10 am on Lyell Rd in Gates.

Interment immediately following the mass at Holy Sepulchre cemetary.

Following the cemetary, lunch at The Brook House on West Ridge Rd.

Joseph William Martuscello Jr 12/21/59 - 11/24/06

2006-11-24T09:26:00.000-05:00

Joe passed away peacefully at 4:10 am this morning with Gina and I. We held his hands and said our goodbyes - he told us that he loved us and Tom and we told him to wait for us on the other side. He smiled and we both kissed him goodbye. Tom arrived home about 2 minutes later. He was planning to do early morning shopping......

I know that he is grateful for all of the wonderful things that you all have done for us - and it's heartbreaking that the treatments that he underwent did not work to cure him.

We believe that Joe is in a better place - pain free - drain free - and reffing a soccer game in heaven. We reminded him of those that went before him - to find them - and make a place in heaven. So, to Grandma Rose, Grandma Florence, Grandpa Rotondo, Joe Ross, Uncle Paul, Anita Eichholz, Brad Girvin, Uncle Charlie, Aunt Mary, Aunt Rose, Uncle Joe, Mary Sanguedolce, Elaine Peck and our precious Jayde.....we pray that you find Joe and welcome him into Heaven.

With a heavy heart,
Love,
Vicki, Gina & Tom

I miss him terribly already.

Calling hours will most likely be Sunday from 3-7 at Dierna Funeral home on Culver Rd in Irondequoit - with the mass being Monday. The church depends on Father Werth's availability.

Visitors

2006-11-22T10:08:00.000-05:00

Joe continues to grow weaker every day and the volume of visitors is wearing him out. He is feeling uncomfortable with people sitting and just looking at him - thus I am going to stop visitors.

Unfortunately Gina and I are up most of the night with Joe these days and the only time he and we have to rest is during the day.

We appreciate all of your good intentions, but at this point in his illness, the 4 of us want to sit together and say goodbye. I hope that you all can respect this.

I will post again if we have any major changes in Joe's condition.

We wish you all a wonderful Thanksgiving. I found this poem in my desk this morning as I was rummaging for something that I lost. I thought I would share it with you - - - and no, I didn't find the receipt I was looking for!

With love and a heavy heart,
Vicki, Gina & Tom

Each of us is put here on earth to learn, share, love, appreciate and give of ourselves. None of us knows when this fantastic experience will end. It can be taken away at any mooment. Perhaps this is the powers' way of telling us that we must make the most out of every single day.
From now on, on your way to work, or on your way home, find something beautiful to notice. It doesn't have to be something you see, it could be a scent! Perhaps one of freshly baked bread wafting out of someone's house, or the sound of the breeze slightly rusting the leaves inthe trees. Or the way the morning light catches one autumn leaf as it falls gently to the ground. Please look for these things and cherish them. For although it may sound trite to some, these things are the stuff of life. The little things we are put here on earth to enjoy. The things we often take for granted. We must make it important to notice them, for at anytime....it can all be taken away.
Try to appreciate all of thse things that sometimes we all overlook. Take notice of something special you see on your lunch hour today. Go barefoot. Or walk on the beach at sunset. Stop off on the way home tonight to get a double dip ice cream cone. For as we get older, it is not the things we did that we often regret, but the things we didn't do.
Remember - life is not measured by the number of breaths we take, but by the moments that take our breath away.

A peaceful night

2006-11-18T07:20:00.000-05:00

Joe had a peaceful night and awoke to a beautiful sunrise. He played cards with Ann and Linda who sat with him while I went to Tom's basketball parent meeting. He joked with them and tried to teach them to play poker - it was nice to see a glimpse of Joe still hiding in himself. Joe grows weaker with every day passing and today told me that he cannot eat anything or take his medicine. I fear that the end is very near. It's hard to watch this process and I am struggling to find the words to write here! Me, at a loss for words, who would've ever thought!?

As I sat next to him for the night listening to him breathe, many thoughts have come to mind as we've traveled this road of cancer. I have encountered many wonderful people on our way and seen the worst in others come out. How ironic to experience such diverse reactions, all while managing my own grief along with Gina & Tom's. Alas though, the good outweighs the bad and there are many people out there to thank. Doctors, nurses, volunteers, many of whom went out of their way to make our day just a little nicer, regardless of what was happening. We reconnected with 2 nephews that we had not spoken with or seen in a very long time. Our nephew Joe had another son recently - a new life - to renew our spirit that God is around, even in a time of sorrow. We reconnected with Joe's cousin Dana - and found a wonderful adult friend in the process. Friends and family who follow our story, even from across the pond, are supportive of our endeavor, and tell me that they are inspired by our strength. I am not sure that I have yet to understand the volume of strength - as I am inspired by the strength of the people around me.

My father, Toni or Bill visit daily to check on Joe, Tom & I. Little things that they do help us keep going. Paul & Maureen, although still raw from Mrs. Cassarino's death and fighting Lynnie's continuing knee pain are available to help - or find help - whenever. Pat & Ray remain on vigil. How blessed we are to have friends who can help us through the process. Silvana, Fran and Rose don't let a week go by without sending dinner. The Andersons, although fighting Scott's own illness, never allow us to stray from their thoughts or prayers. Cards from Joe's family on Long Island that we have never met arrive along with supportive emails - all a testimont to life. One of Joe's sisters or mother calls daily - even though most times Joe is asleep and they cannot talk to him. Joanie from Dr Amato's office calls daily for an update on Joe - and she and the good doctor continue to struggle to find something to help. My friends and employees at work have literally lifted me through this struggle - and taken on my work along with their own - patiently - without regret - and support me and watch me cry as I try to get through the day. Tom's friends still come over and help with things around the house and yard - with no urging from me! How wonderful to have so many young adults coming by and talk to Joe like he is still healthy. Anna's phone bill has probably hit hundreds of dollars - yet there's never a time when she feels I may be blue that she's too busy. Daily calls from Robin, Kellie, Michelle and Donna keep my spirits high and help me through the latest battle. It doesn't matter to them if I just cry - but each call does bring a little laughter. Frank never fails to stop by the hospital or house - and even though he was freaked out by Joe's platelet reaction, he keeps coming! Danny & Kevin don't let a week go by without dropping in and seeing Joe. I see the hurt in their eyes and it pains me to let them see Joe so ill. Don continues to send jazz CD's to Joe to listen to - totalling one per week since he's been ill! Our neighbors are keeping a close eye on us and anything out of the ordinary brings them over with offers to help. There's not a day that goes by that I don't get a card or see someone who is touched by Joe's illness. Tom's teachers, counselor and Lucy keep a watchful eye on him all day. Angels among us.

Cancer touches us all. I am so proud of my children who go through their lives so hurt and touched by their dad's illness - yet persevere through school, sports and their own teenage lives. Perhaps it's the circle of friends who surround them that keep them afloat. They, along with these friends are remarkable, exceptional people. I am not sure at 16 or 20 years old that I could have been as brave as them. Joe is a fighter and last night we went through all of the various treatments that he endured - along with me as a make-shift nurse! How patient he is to do what we have all asked of him - even though it was grueling. He still went to Tom's games over the summer and into the Fall soccer season. He kept up with the news and took care of Cameo. Cancer has touched each of you reading this blog - and your constant prayers and support mean everything to us.

Joe says he can't get out of bed today.

Should you go First
"Should you go first and I remain to walk the road alone.
I'll live in memory's garden, dear with happy days we've known.
In Spring I'll wait for roses red,when fades the lilacs blue, in early fall, when brown leaves call, I'll catch a glimpse of you
Should you go first, and I remain for battles to be fought,
each thing you've touched along the way will be a hallowed spot
I'll hear your voice; I'll see your smile, though blindly I may grope, the memory of your helping hand will buoy me on with hope

Should you go first and I remain to finish with the scroll
No length'ning shadows ahall creep in to make this life seem droll
We've known so much of happiness we've had our cup of joy, and memory is
one gift of God that death cannot destroy

Should you go first and I remain,
one thing I'd have you do; walk slowly down that long, lone path, for soon I'll
follow you.
I'll want to know each step you take that I may walk the same,
for some day down that lonely road you'll hear me call your name
Author: A.K. Rowswell

Love,
Vicki, Gina & Tom

Resting at home comfortably

2006-11-17T14:05:00.000-05:00

Joe is resting home fairly comfortably. He is beginning to have trouble breathing and his breathing is getting more and more labored. He is eating less, talking less and sleeping more. During his waking moments though, he says he's hungry and still maintains a good sense of humor. We're trying to entice his appetite with anything he wants - - he eats little bits but seems happy with what we're preparing. We had a little scare last night as he was really struggling, but thank goodness for angels on earth as Pat Lanzafame came over and helped us all through it.

Prayers for peaceful days and zero pain.

Love,
Vicki, Gina & Tom

Home, at last

2006-11-15T20:45:00.000-05:00

Joe was released from the hospital yesterday afternoon - it was nice to get him home and see him comfortable in the living room instead of the hospital bed. While it was tough to get him in the house, he's here - that's all that matters!

The lifetime home health nurse came by today to reinstate Joe - we won't have the morning nursing staff until Monday at the earliest - but Phyllis has been a wonderful help for us and great for Joe.

Joe is resting comfortably here - we're battling a few issues like the fluid in his legs and arms - but so far, so good. He gets easily unfocused, so I am going to keep visitors at only a couple at a time- too much activity gets him fairly agitated.

Thanks for all your well wishes - - - this journey that we're on has had mostly uphill climbs, but throughout it all we have had an unending pool of support from so many of you....and unconditional love and acceptance. For that, I will always be eternally grateful.

We're taking one day at a time.

Love,
Vicki, Gina & Tom

PS - double congrats to Tom & Steve this week as they got inducted into NHS AND made the varsity basketball team. Way to go guys!

A little fun last night

2006-11-14T08:42:00.000-05:00

Last night Tom was inducted into the National Honor Society. Joe so wanted to be released from the hospital and come, but with the weather and his frail state, we didn't feel that he could manage the trip. So, we brought the NHS to Joe.

Attached 2 pictures - the first of Joe, Gina, Tom & Kate, the other of Tom, Jake & Steve.

We're all so proud of Tom, the legacy continues! A little joy brought to the hospital and the smile on Joe face was priceless.

Love,
Vicki, Gina & Tom

Update on Joe

2006-11-12T21:19:00.000-05:00

Good evening all.

Joe is still in Strong Memorial Hospital and has begun a new treatment- a palliative care treatment, not curative. Unfortunately, his cancer has grown beyond what the doctors feel that they can cure, and at this time are prescribing medicines to help ease his pain, maintain his comfort and ease his suffering.

He will be having 4 treatments of radiation on his back to help relieve the pressure of the tumors on his spine. He had his first treatment on Friday, the subsequent ones to occur Monday - Wednesday. Since he has to be premedicated for treatment (he has to lie on his back for 30 minutes) he will remain inpatient until Wednesday after his radiation, when I will bring him home. At that time, we will begin home hospice.

He has begun treatment using Megestrol acetate - Megace - which is a hormonal therapy usually used to treat breast cancer but also used to treat prostate cancer. One of the side effects is increased appetite - which is something that the doctors want for Joe - to stop losing weight. He gets this once per day. The second drug he is starting is Cimetidine which is used to treat cancers of the stomach. Since Joe has had the ascites and such issues with his abdomen, this medicine may help to stop the cancer growth there and relieve pressure and pain.

Neither of these medicines will cure Joe. At this time, the doctors have told me that Joe's cancer is not curable. What a horrid conversation that was. My worst nightmare has come true. Dr Kohli believes Joe has upwards of 3 months, Dr Deepak believes it to be less. Both doctors are concerned that any infection will take Joe from us in a matter of days if he gets ill.

Joe has extreme fluid retention in his legs- from his lymph system that is not properly working- and his blood pressure is frighteningly low. Fluids help to boost his pressure, but work against us as they accumulate in his feet, arms & legs. His leg fracture is being watched carefully and his movements are slow and careful.

Until that day we'll savor the good ones and get through the bad days. I will look back at this time and perhaps one day understand the journey that God has put us all through - and understand why he has taken Joe from us at such a young age. Today though, I can't understand.

I pray that Joe will make it through his birthday and the holidays so that our friends and family can say goodbye one last time. Words cannot express our deep sadness as our work to cure Joe was just not meant to be. No one has better family & friends than we do though, and we love you for all that you have all done for us - to help us through this - a little better than we were before, and a lot stronger in faith and love.

With continued hope,
Vicki, Gina & Tom

Strong - Day 12

2006-11-10T05:47:00.000-05:00

Day 12 emerges with Joe still in Strong. The nurse manager and myself spoke with the oncologist Dr Deepak to see what it would take to get Joe home. He said he wants to ensure that he will not get an infection in his bladder. His legs are still pretty well swollen with fluid as well. They continue to discuss catheterization. Last night though he was able to almost empty his entire bladder. His arm is still healing.

Dr Chen came by and Joe signed consent forms for radiation on his spinal area to help relieve pressure from the cancer in his back bone. He will begin treatment today.

Pathology reports indicate that the chemo combo was unsuccessful in getting his cancer to stop growing. A part of me truly believes that it did do some good, however, I was unable to get medical confirmation. Sometimes, though, I think you just know.

No one has discussed hospice with us, however I am sure that this is the next step. Joe is not ready to give up, so I will continue to do some research with the world to see if a cocktail of something can stop the beast from growing inside of him. We will never give up hope.

Love,
Vicki, Gina & Tom

Strong - Day 10

2006-11-09T10:17:00.000-05:00

Joe continues to stay at Strong Memorial hospital - with little change. The orthopedic oncologist came to see us last night and compared his bone scans/CT scans from Monday to those taken in both April and September. He felt that the bone degeneration has not been significantly increased since April and he didn't feel that it was necessary to place pins in his femur to hold the bones in place. He believed that if Joe was not symptomatic (any more than he has been since April) that it would be unnecessary to put him through surgery. That was the first good news we've heard in ages. They are also again looking at his back and determining that it would be a good idea to do the radiation to his spine to help with pain and swelling locating around the back tumors. Dr Deepak has released him from bed rest. He will be moving around with the help of a cane or walker. Orthopedic and physical therapy did visit with Joe yesterday and gave him some exercises to do to help keep him strong and not lose mobility.

He continues to have issues relating to his bladder and for now, they have not made any strong stand or decision on how to correct this issue. His feet and legs are swollen beyond recognition and this is very concerning.

His arm, while still bigger than the other, appears to be getting better. Docs are still on red-alert. Not sure if they're more worried about his arm or my temper............

Yesterday the Palliative care team sent in a harpist to play for Joe...he said it was very moving and the music lovely. I wish that I were there to listen as it sounds like it was just wonderful. Roxanne, Rosalyn, Yvonne and Joe's mother did get to enjoy it with him.

Tom, Kate and I spent a quiet evening in his room, them doing homework, us watching TV and we all took a much-needed nap for a bit!

As my big-sister Geralyn told me today - Sieze the day! Yesterday is
past, tomorrow hasn’t happened yet, today is a gift, that’s why it’s called the
present!

So everyone - seize the day. We're blessed with some very nice autumn weather and sunshine.

Hug someone a little tighter today.

With love and continued hope
Vicki, Gina & Tom

News from the scans not good

2006-11-08T08:26:00.000-05:00

Another rough day at the hospital. Joe's arm is doing better where the dye leaked into his arm tissue and it appears that there will be no residual damage. His arm is still swollen but it's gone down a lot and he has no pain. The radiologist continues to visit - he should - and the doctors in the area are watching him closely. This is one issue that did NOT have to happen. I have spoken with the hospital director's office. I want a pound of flesh for this one.

His urination issue is still at large, today they may catheterize him to remove all of the urine from the bladder. He is still swollen in his legs but it appears to be a little better.

Joe has a fracture in his right femur. This is due to the tremendous cancer growth in his bones. The fracture was caused by the cancer eating the bone, nothing he did. He is currently on total bed rest - no walking - and the orthopedic doctors will be visiting to give him options. One option is to insert a pin in his leg to hold the femur together.

The CT scans showed additional tumor growth in his bones, peritoneal cavity and his lungs mets are larger. Thus the chemotherapy did not work. This is heartbreaking news as it was a tough decision to make to have the chemo and a rough road to get it. It is my hope that although it didn't work, perhaps it did buy Joe some time. Dr Kohli will be coming by today - I hope - to talk about options. I am SURE he will not recommend any further treatment.

I asked Joe last night when everyone else had left what he wanted to do in light of the news that we received. He told me that he wanted to continue to watch the movie we were watching and not discuss it. So - we did! We watched House last night and I left him peacefully sleeping.

This morning he is feeling fine - and felt that the bladder issue may be getting better with the medicine that he's on. He was a little annoyed at being woken up by the doctors late last night, checking on his arm. Today his mom and 2 of his sisters will be visiting him for the day.

It was a sad day as a friend of ours died in a car accident on Rt 31. May Missy rest in peace.

We are Saddened by all the news.....But not giving up yet!

With love and hope,
Vicki, Gina & Tom

Strong - Day 7 - can't catch a break

2006-11-07T09:47:00.000-05:00

Last night they took Joe to get his CT scans that were scheduled for the 9th but since he is an inpatient and they're concerned about his bladder issues, the doctors thought that they might as well get the CT scans done early and see if they can assess his success/failure/progress with the chemotherapy as well as the bladder issues now. They had to insert an IV line as his PICC line cannot tolerate the contrast dye. All went well. Joe drank a little of the contrast dye before he left but took the bottle with him. Gina, Tom & I went to Tom's school soccer banquet. Joe said he had a busy day and was planning on eating dinner and sleeping after the scan.

We called at 9 pm and was told by his nurse that he was still in radiology - there was a backup and he had not drank enough of the contrast dye - so they were trying to keep him awake and get him to drink more. At 10 pm she called - during the CT scan the radiologist had to stop as there appeared to be no contrast dye in him! He pulled him from the machine to find that Joe's left arm/hand were swollen beyond recognition and the dye had seeped into the arm instead of the vein. Apparently the technician had pushed the dye into his IV line too quickly/strong and collapsed the vein.

They moved him back into his room, removed the IV line, packed his arm with an ace bandage and elevated it. They then gave him some meds to sleep and watched him through the night.

Angry, I got to the hospital very early this morning and stood by the door waiting for the technician/radiologist/doctor - anyone to kill. The radiologist did a little bit of a tap dance but I did finally get out of him that the tech screwed up. Repetitive tapping of my foot and a death glare probably got the necessary information - also I was guarding the door with my body and NO ONE was leaving until I got the truth. Bottom line - it is RARE - VERY RARE - for anyone to have this happen. If I had a dollar for every time they said that - we would be rich.

Joe is fine. It took a little for us to get his wedding band off his very swollen hand and the swelling appears to be dissipating. The nursing staff is on high alert with him as the dye can be damaging to the tissue in his arm and hand. I left him in Jody's capable hands for the day.

Joe can't catch a break. They still have to do the CT scans and they have not solved the bladder issues yet. He had a good day yesterday visiting with Dana and Bill, and my dad came up and took Joe outside for a little while in the nice weather and sunshine. He enjoyed his visits and the day. What a way to end the day though.....

Who knows what will happen today...........

Love,
Vicki, Gina & Tom

Strong - day 6

2006-11-06T13:55:00.000-05:00

Joe continues to be in Strong hospital and right now we do not have any idea when he may be released.

The doctors are a little stumped as to why he is retaining so much fluid and they're working to determine the cause of his bladder retention issue. At this point they're beginning new medicine to see if they can relax the bladder to release and see if this will help. If not, it's catheter time - of which Joe is NOT very happy about!

On the plus side he is using much less oxygen and he is not as confused as before. He is walking around the nurse's station without the aid of a walker or oxygen and is in good spirits. His nose is totally unpacked and has not bled. His kidney functions and blood work look good. We just have to get our arms around the bladder issue and he can come home....

On the kidney cancer list serve someone posted this poem - I thought it fitting since we're struggling with Joe's illness and prognosis......

Hope is a complex concept, often misunderstood by many people, including health care professionals
People define “hope” differently
Hope is not optimism or wishing
Hope is a way of feeling, thinking, and acting
Hope is a cognitive/affective resource that is a psychological asset
Hope is a prerequisite for action
Hope guards against despair, and helps to make stress
bearable
Hope is flexible
Hope has a time aspect, and involves a consideration of the future
Hope changes as situations change
A well-functioning hope does repress doubts and fears, but hope does not equate with denial
Hopelessness leads to helplessness
There is not such thing as false hope
There is always something to hope for, no matter how dire the situation

Love
Vicki, Gina & Tom

Still in Strong

2006-11-05T08:53:00.000-05:00

Good morning. Yesterday began a little concerning but ended quite peacefully. Joe was having trouble breathing in the morning but all day long and until 10 pm when I left, he was using his oxygen intermittently and his O2 stats were hovering around 93. So, it appears that perhaps he was having a panic attack or some other sort of anxiety causing the breathing issues.

He is still struggling to urinate and they've begun to give him some medication to help reduce his prostate if this is the problem. They have yet to send him for any scans or ultrasound - but then again - it IS the weekend at Strong Memorial! :-) Our shining star nurse Jack as 'browned the room out' so that his semi-private will remain private. This has helped with his confusion a bit.

I don't know what today will bring. His nose is not bleeding, his breathing appears to be good, and his appetite is a little better today than it's been. Not great, but better. He is walking around the nurse's station a few times a day which is encouraging and also talking about coming home. We need to get the urination issue behind us so that we can bring him home.

Plans are still the same for scans the 9th. If he is there much longer, though, I am going to see if they can do the scans before he leaves - no use dragging him out into the very cool autumn upstate NY weather for nothing!

Today Joe's cousin Dana is planning to visit. Tomorrow his brother Bill. Gina is home again for the weekend. I am hoping that he has some pleasure in these visits and it gives him more incentive to keep on fighting.

Thanks again for all the cards & notes. Thanks Fran & Rich for the fruit basket. Thanks Rose and Silvana for the food last night - you guys feed us all the time! And thank you again to the boys varsity and travel soccer teams. How blessed we are to have 30 more sons. I could not ask for more wonderful children. We love you all so much.

Vicki, Gina & Tom

No more nose packing!

2006-11-04T07:04:00.000-05:00

Joe had the packing removed from his nose yesterday - all 6' of it - with Anna and I watching in total dismay! The bleeding did not continue and his platelet count is in good shape.

Other complications have begun to arise - Joe is confused a lot of the time and has disjointed conversations. He is struggling to urinate. The nurses gave him a bladder ultrasound to determine the fluid content - he is holding a lot of fluid. They need to do a urinalysis - - but need a sample first! He is retaining water in his arms and legs. It could be due to the high amount of fluids he is receiving as his blood pressure was quite low and his inability to urinate. He is still off his Lovenox for the blood clot in his leg - they're concerned to put him back on the blood thinners for fear his nose will again bleed - but to not put him on may cause the clot to break off and travel.

Due to all of the above, it doesn't appear that Joe will come home. I have begged to get him a private room in 6-3400 to no avail. The constant flow of a roommate and their visitors is very distracting to Joe....and to us all! :-(

We're keeping the faith though and hoping for something as small as a UTI to explain the fluid, confusion and inability to pee! Something has to go right......

Love,
Vicki, Gina & Tom

Still battling at Strong

2006-11-03T06:56:00.000-05:00

Joe is still at Strong Memorial Hospital. All in all, he had a pretty rough day yesterday. I got to the hospital in the early morning, and went to his room. Upon entering, Joe was not there- however his clothes were still in the closet. Needless to say, I panicked! I found the head nurse who told me that he had been moved to another room around 1 am Thursday as his roommate's death was imminent. He passed away at 2:30 am. Unfortunately, in my quest to find Joe, I found his roommate still in the room. Eerie. Anyhow, Joe was fairly well disoriented and quite distraught when I got to him. He must've heard something going on as he believed that he, himself, was dying. No amount of encouragement from me and the nurse could seem to help him. They sent in some of the Palliative care doctors to talk to him, but he really was not open to discussing it with them. They left, telling him that they would return. I called my dad to come and talk to Joe with me.

Dr Miller, the ENT doctor came in around noon to remove the packing from his right nostrile. He said that he wanted Joe to have 5 units of platelets before he pulled the packing as a preventative measure. The units were ordered and he left, telling us he would return. Joe got the platelets around 1:30 pm. Around 2 pm he began to itch his eyes and while I was removing the hair from his face (it's falling out again), he began to break out in hives. We called the nurse as the hives were coming fast and furious - his eyes and tongue were swollen and the hives were on his face, chest, neck and back. They quickly gave him additional Benadryl, some steroids and stopped the platelets. Dad and I kept bathing him with cold washcloths while Frank fanned him with the menu. Those things seemed to help calm him down. Between the itching and the inability to perceive he had enough air, it was a pretty tenuous hour. It took several hours before the hives disappeared, however his eyes and mouth were still very swollen at 8:45 pm last night when Kathy and I left the room. He looks like Rocky Balboa! Dr Miller did remove the packing from the right side, and no bleeding occurred. He plans to remove the packing from the left side in sections today. If no bleeding occurs, Joe will be released tomorrow.

Dr Kohli came to see him and said that the reaction was (insert English with an Indian accent) "Very rare - very very rare". Of course it was rare - Joe got it! He received platelets and fresh frozen plasma on Tuesday with no reaction so it had to be a stray antigen in the platelets that reacted so violently in his system.
I don't know what today will bring. I hope it is uneventful and quiet. I hope Joe will eat something and begin to get some strength back.

All I do know is that I can write a book!

Thank you again Pat and Don for putting in the other replacement window. You guys are wonderful.

Love,
Vicki, Gina & Tom

Coming home today? Maybe!

2006-11-02T06:54:00.000-05:00

Joe yesterday had an uneventful day - which is a good thing! His blood levels have risen significantly and his nose, while still packed with 6' of cotton, is not bleeding. The plan is to release him today or tomorrow, and have the packing removed at the Ear, Nose & Throat clinic.

He's a little frustrated because since he cannot smell anything or breathe out of his nose, he is struggling to eat. Think about it - he only breathes out of his mouth and when he eats he can't breathe - and his oxygen is already deprived - well - it's just a situation. But, we're all cheerleading him to eat something - anything! Dad got him to walk around the nurse's station twice yesterday and Joe did eat a few of the cookies Paul brought.

It's been an experience to be in a semi-private room - Neither of us feel very comfortable there - and his roommate is terminal - so there's a non-stop stream of visitors - with a good level of emotion in the room all the time. Joe says he cannot focus.

Let's hope today is the day that he comes home! :-)

Love and hope,
Vicki, Gina & Tom

In Strong again

2006-11-01T07:30:00.000-05:00

Wow - what a day. While we got the bleeding to stop, Joe had many blood clots in his nose and throat, thus the visiting nurse determined that he really needed to go into Emergency. We were blessed to have a wonderful Ear, Nose and Throat doctor take care of him. He removed the blood clots - which were many and huge - and packed his nose. That procedure is tough to tolerate - Joe was a trooper - and even on heavy morphine he was in desperate pain. But, he got through it and 10 hours later I was feeding him spaghetti in 6-3400.

His platelet and blood counts are low which was the reason that we could not get his nose to stop bleeding - so he received fresh frozen platelets, plasma and 2 units of blood.

The plan today is to remove the packing from his nose and see if it continues to bleed. If it does, they will cauterize the vessels.

We hope that he will return home tonight, but, ya never know!

I am off to the hospital - will post an update tonight when I return.

With love and thanks
Vicki, Gina & Tom

2006-10-31T08:30:00.000-05:00

Joe had a very good day, but followed with a rough night.

Joe's not sleeping through the night very well, and at 3 am he got a bloody nose. Being on the Lovenox for the blood clot, it's hard to stop him from bleeding once it begins, so we battled it on and off until 7 am this morning when Harriett came in and took over. I just talked to her and she said that she has it under control. Just one more thing to add to our list of worries. The visiting nurse will be coming today to change his PICC line bandage and said she'll assess him from there. Let's all hope that this is just due to the oxygen irritating his nose and nothing worse.

The day yesterday was good though, he sat outside for awhile in the bright sunshine. Today is suppose to be just as nice, and his sister Nanette is coming to spend the day with him.

Last night we received a 'good bye' call from our nephew and godchild Bob Siegel who is leaving for Iraq today. Please keep Bob in your prayers for his safe return.

"Hope sees the invisible, feels the intangible and achieves the impossible"

With love and hope,
Vicki, Gina & Tom

Weekend update

2006-10-30T12:19:00.000-05:00

What a weekend we had! Joe was not himself at all on Saturday, not feeling well and experiencing a lot of pain. We got through that day and on Sunday afternoon he began to feel better. I don't know if it's the cancer or the chemo or both, but it was apparent that he was giving up.

Sunday night he was feeling better, eating better and was able to converse with us all, especially Gina who was heading back to UB for the week.

This morning he is in good spirits and welcomed Harriett, our morning nurse.

All in all, it's been a roller coaster ride for sure. One that I would rather, if you don't mind, not be on!

We're taking one day at a time. Joe will have chest, abdominal and pelvic CT scans on the 9th of November. Results of those scans will determine our next course of action.

For now, we're keeping a close watch on him and working hard to keep him pain free and comfortable.

Thank you all for your prayers and cards!

Good friends are like stars.........You don't always see them, but you
know they are always there

With love and hope,
Vicki, Gina & Tom

Friendship

2006-10-27T09:57:00.000-04:00

This came to me from my girlfriend and sorority sister Michelle Wellner. How blessed I am.

People come into your life for a reason, a season or a lifetime. When you know which one it is, you will know what to do for that person. When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that o ur need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON, because your turn has come to share, grow or learn. They bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it, it is real. But only for a season!

LIFETIME relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant.

Thank you for being a part of my life, whether you were a reason, a season or a lifetime.

Love,
Vicki, Gina & Tom

Recuperating at home

2006-10-26T11:21:00.000-04:00

Joe is recuperating slowly from his chemo treatment at home. Yesterday he went to the clinic and received a shot of Neulasta to help boost his white blood cell counts. He also received a treatment of Zometa to remove calcium from his sytem and put it int his bones. Joanie from Houston informed me that his calcium level was high - which will cause confusion. Interesting - seems it takes 2000+ miles to learn things that I should be communicated to from the greater Rochester area - but alas - I still have Joanie and Dr Amato continuing to look out for Joe! That is a great comfort to me.

With the cold weather upon us Joe really can't go out at all, he is suseptible to colds and flu. Also with the winter onset of cold & flu season, I am going to do my best to keep him healthy and warm.

Thank you again for everyone's support at our Magic & Music event. Joe continues to talk about the night and how wonderful it was to see everyone. It is my heartfelt wish that with God's blessing for a miracle cure - we will have a huge open house to thank everyone in person for all of your support, love and well wishes. We could not have done it alone. I can't begin to send thank you notes to you all - but know that you are all angels in our hearts.

With continued hope
Vicki, Gina & Tom

Second Round of Chemo DONE!

2006-10-24T19:45:00.000-04:00

Joe received his second round of chemotherapy this afternoon in the clinic at Strong. His blood draw all looked good - all of his counts were within normal range and he was given the go-ahead to receive chemo. He received his Gemzar in a 1/2 hour infusion and then a 40 minute infusion of the Adriamycin - this was different than the push infusion that he received in the hospital. They premedicated him with the same anti-nausea drugs and so far, so good. Since his blood pressure has been quite low he got a liter of fluid before we left.

He came home and ate a plate of Silvana's pasta!

Tomorrow afternoon he will get a shot of Neulasta to help his red blood cell count remain high.

We need to cheerlead to keep him eating as he's down to 153 lbs and pretty thin.....but his spirits are high.

Round 2 done. I have 3 weeks before I have to get out my helmet and kevlar armour to fight with the docs again........but for now - we are going to keep a watchful eye on Joe to make sure that he doesn't get sick as the chemo kicks in.

Thanks for all your prayers -

Continued hope
Vicki, Gina & Tom

Dr Kohli visit update

2006-10-24T06:37:00.000-04:00

We saw Dr Kohli yesterday morning and he told us that the bone scan showed additional cancer growth in Joe's spine up to T2. We knew that there was additional growth from our visit in September to Dr Amato, so it was not a surprise, but we did find out that at this point there is not involvement with the ribs.
The question that we pondered was whether to let Joe have radiation on his back to help alleviate some of the pain, or a second round of chemotherapy. Because Dr Kohli has not seen any measureable improvement in Joe's condition such as elimination of the ascites, reduction in pain or increased stamina, he does not feel that the chemo is working and opted for the radiation as a palliative care treatment. Joe wants to continue on the chemo path. We talked about the risks associated with additional chemotherapy - fatigue, low blood counts and compromised immune system......but the shred of hope that the chemo may kick in and give Joe some time is the goal that he is looking for. Dr Kohli does not have any experience with this particular cocktail of chemo and we respect his opinion and know his concern for Joe's overall care. My hope is that I can finally convince he and Dr Amato to TALK to one another to ease Dr Kohli's mind as Dr Amato has treated patients - and I have talked with them - on this particular treatment. There's such a fine line to cross here - and sometimes I feel that the doctors have forgotten the patient.
So, today we embark on treatment #2. As I was sitting waiting to see Dr K yesterday, I glanced at the calendar. If we were in Houston Joe would be embarking on treatment #3......
But, at 12:30 we'll enter the clinic, give Joe his pre-meds for the treatment, and then begin. It will take about 4 hours to complete the treatment. On Wednesday he'll go back to the clinic for a shot of Neulesta to help boost his cell counts. I guess these are not available over the counter like his Aranesp is.
Joe is ready for the treatment - he ate a good dinner last night and slept well.

Happy birthday yesterday Roxanne!

love
Vicki, Gina & Tom

Thank you from the heart

2006-10-23T05:29:00.000-04:00

The Magic & Music show was awesome! The energy in the room vibrated and the love from our family and friends was flowing. Joe was so happy to see all of you and had a smile from start to finish. We are overwhelmed by the generosity of you all and we are most grateful from the bottom of our hearts.

To Tom Etsler and the Boys soccer team - Joe and I were blessed with only 2 children- you have come into our lives and completed the wish for more! You are the shining stars in our lives and we are so proud of you all - on and off the field. The house is happier when you're in it! Thank you for taking your time and gathering those thousands of cans! We have never seen such a pile!! Your winning personalities and wonderful nature will take you far in your lives. We are the privledged ones to have you.

To Brian Geer - Tom and Joe rave about the magic you show them during your weekend away each year. Thank you so much for your time and energy. You are truly amazing.

To the band - your upbeat music made everyone in the room smile! Keep making music and know how much Joe misses being in your presence. Thank you from us all.

To the team who put this together - you are all true angels.

To everyone else - words of thank you aren't enough, but it's all I have. David said it well - you are saints.
We are humbled by you.

So today as I take Joe to Dr Kohli's office, I will use some of that energy to convince him that Joe IS strong enough for another round of chemo - to hopefully give us what we all need - more time together.

With continued hope,
Vicki, Gina & Tom

Thank You, Thank You, Thank You

2006-10-21T16:29:00.000-04:00

Last night Gina and I joined the remarkable team of folks who is putting on the Magic & Music show to help put together the baskets of donated items. We had such fun together and the night was a real pick-me-up for us. We are humbled and speechless as to the outpouring of love, generosity and support that this community has given to us. The list for "Thank You" is so very long and many of the people are not even known to us - so I will just say a genuine and heartfelt thanks to you all.

A standing ovation to the best and hardest working team I have ever seen work on this benefit. With little direction they have put together something that will be awesome tomorrow. My hope is that Joe will feel the energy in the auditorium and gather it for his fight against cancer. He's growing weaker by the day, but I know that when he sees his family and friends gather to see him, he will find the strength to go on and have this second round of chemo.

So, to:
Toni & Bill Zeiser
Robin, David & Nicole Pritchard
Ann Moscicki
Karen Ludwig
Patty Bosch
Donna Hatfield
Maureen & Paul Cassarino
Debbie Moyer

We love you and are thankful that you are with us in our journey. No one could do more than you have done to help.

Someday, we will pay it forward.

Love,
Vicki, Gina & Tom

No news on the bone scan yet

2006-10-19T10:27:00.000-04:00

No news on the bone scan results yet - we're anticipating that the news will show additional bone involvement, but hoping that it won't show in the rib cage area. I have called yet another time for the results with no response yet.

Joe is doing OK - pretty tired most of the day - eating OK - not great - but he has not lost any more weight, which is a good thing! I am nagging him to eat all the time!

Thank you all who've been coming over and taking care of him from 7-10 am daily. It's been a huge help. He is enjoying seeing you all and the transition from helper to aide has been smooth! You're all wonderful and we appreciate all of the help we've gotten.

Joe is looking forward to seeing everyone on Sunday - hearing the band and watching Brian - visiting with friends and family. Thanks is not enough for all your support.

We're still on schedule to see Dr Kohli on Monday and hopefully have a second round of chemo on Tuesday. God willing he will be strong enough to handle the treatment.

Scott Anderson got good news on Monday - his primary tumor has shrunk and there is no new involvement. Joe and I are so happy for this news for him! All your prayers have helped so much. Tom told Joe now it's his turn for us to get good news! :-)

Love and thanks
Vicki, Gina & Tom

Silent Auction Items

2006-10-19T10:18:00.000-04:00

Hello Everyone!

Continue to spread the word about Sunday's benefit. Here is a a short list of the items that have been donated for the silent auction.

Kodak EasyShare V530 Digital Camera

Certificate for Sunglasses

Certificate for Frames ($150) & Single Vision Transition Lenses ($180)

Spa Gift Certificate

Lady's Stainless Watch

Gents Stainless Watch

Gents Two Tone Stainless Watach

Gift Certificate

Bird Feeder, Bird Food, accessories

Gift Basket

Gift Certificate

Golf Frame

Mary Kay Gift Basket

Creative Memories Gift Basket

Rochester Raging Rhino's Premium Tickets + Autographed Team Picture

Cut & Style Gift Certificate

Palermo's Sub Shop Gift Certificate

One Standard Growler Fill

Rohrbach's Medium T-Shirt

Home Interiors Frame

Gardenia dishes - 4 place settings

Gold earrings

In Abba's Arms CD

(4) RMSC Passes

Kodak EasyShare DX7440 Digital Camera

Kodak EasyShare DX7530 Digital Camera

Signed Rochester Americans Flag

NYS Double Gold Medal Wine

DVD player
Microwave oven

We are looking forward to a wonderful evening of magic, music and fun at Spencerport High School, Sunday October 22nd at 6:00PM.

Bone Scan yesterday

2006-10-17T10:21:00.000-04:00

Yesterday Joe went to Strong for a bone scan to determine if he has additional tumors on his back or on his ribs, as Dr Chen believes. We won't have the results from this scan for a few days. He was pretty beat after the 2 trips to the hospital - one for the radioactive dye shot and the other for the scan itself. My dad brought him to the first appointment and dad and Phyllis brought him back for the actual scan. He sat for the scan - which is good!

We see Dr Kohli on Monday to deterine if Joe is healthy enough for a second round of chemotherapy - or if he should have a few radiation treatments to help reduce the pain. I am keeping my fingers crossed that his blood levels are healthy enough to withstand a second round.

We're taking it one day at a time....and looking forward to seeing many of you on Sunday. Brian Geer is a wonderful entertainer and Joe's band is terrific. It will be a night of celebration, family & friends. Thank you all for making it possible.

Love
Vicki, Gina & Tom

Radiation Update

2006-10-13T09:46:00.000-04:00

Yesterday Joe and I had a very long day at Strong! We saw the nursing staff and then Dr Chen, the radiology oncologist to determine if Joe can/should have radiation on his spine as his back has been in a lot of pain. Dr Chen observed the area that Joe indicated was hurting and she concluded it was more his rib area than the spinal area. She ordered a bone scan on Monday the 16th to see the level of involvement in his rib area. She also has to speak to Dr Kohli and weigh radiation treatments during his chemotherapy treatment - it may be a one-or-the-other choice. Joe will have the bone scan and determine the outcome after that. Dr Chen indicated that she would only give him 1 treatment on either side to help manage the pain.

Joe then went to the clinic for a blood transfusion as he is anemic again and has a low platelet count. This was anticipated with the chemotherapy treatment. It took longer than planned due to the delivery of the blood to the clinic after he'd been typed and crossed, and his PICC line is very small so we had to deliver the blood slower than when he had his central line. Dr Kohli's nurse took a sample of the ascites fluid in his abdomen as it has changed color (it's pink) and we're concerned about internal bleeding. All in all - it ended up being a very long day.

He's feeling better today - enough to fire nurse #3 - and raise hell with the nursing service! Thank you Kathy for staying until Phyllis comes at noon. She is working out wonderfully (thanks Marsha and Dave for the recommendation).

The latest plan is to see Dr Kohli on Monday the 23rd and be admitted to the hospital on Tuesday the 24th for his second round of chemo.

Gina is snowed in in Buffalo -and tonight Tom has a soccer game in Irondequoit. Never a dull moment!

I just read Bill's and Paul's note. Thank you!

Love,
Vicki, Gina & Tom

Silent Auction donations

2006-10-13T09:37:00.000-04:00

Hello everyone!

Just a reminder that we will be accepting donations for the silent auction until Friday October 20, 2006.

Contact your friends and acquaintances in business for donations of any size, gift certificates, services, etc. This beneift is very family-oriented so we want people of all ages to be able to bid. Small items are just as important as expensive items.

If you need to have the items picked up, please contact Robin Pritchard at

(H) 585-293-3735, (W) 585-277-3598 or rwpredfern@aol.com

Joe's Drive

2006-10-11T16:26:00.000-04:00

Joe Martuscello Update
Note: This is being posted by Bill Zeiser ( Brother in law)
Joe’s Drive:

As we all pray for Joe’s last chance chemo to be a success I want to share a weekend that Joe and I spent together in the spring of 1994. Toni had given me a new Rm 125 dirt racing motorcycle for my birthday in February and Joe decided to try his hand at racing my 1988 model. He had not raced motorcycles before, We discussed the fact that the hare scrambles I raced in were 2 hours long and they put obstacles in the track that one had to jump over. Joe said he really wanted to do it and we went down the day before the race to a hunting camp in the southern tier. Joe had to master jumping loose logs on the trail while maintaining speed so as to make it up the steep hill we had to climb. When we started out on Saturday morning, Joe came upon his first set of logs and jumped them with the front of the bike. Unfortunately, he did not lighten up on the throttle and this caused the back of the bike to shoot out and throw Joe and the motorcycle to the ground. He tried again and again with the same results. Joe had fallen mor then 15 times. At this point I asked him if he wanted to forget about the race the next day and just do some light trail riding and enjoy the day. Much to my surprise, he said “no” he was committed to learning to master the logs so he could race the next day. After falling about 5 more times he started to jump the logs successfully. That evening over the camp fire we laughed about it, but I could not help but wonder how he would do the next day at the race.

The next day Joe rode the hills, jumped the logs, and finished his first Hare scrambles.

I must admit I was really surprised that he was able finish, and wonder if I would have had the fortitude to push to the level he did that spring day in 1994.
This is the kind of man I have come to know and that is how I know he has the deep intestinal fortitude to continue his battle with cancer. Joe, I salute you and you are in our prayers daily.
God Bless You and help you in this battle, All our love Bill, Toni Jamie & Amanda

Blood level update

2006-10-11T14:49:00.000-04:00

I just got off the phone with Hazel -Dr Kohli's secretary. Joe is once again anemic and is in need of another blood transfusion. We have an appointment tomorrow to see Dr Chen, the radiology oncologist, who will determine if he can have radiation on his spine to help alleviate the pain. It's palliative care, not curative.

After that, we'll hop up to the oncology unit and he'll have a blood transfusion at 11:30. This should make him feel better and boost his platelet and red blood cell counts. The next round of chemo is scheduled for Tuesday October 24th in Strong's oncology unit. Hopefully he will fare as well as round one and be in and out in a flash! Dr Kohli is spreading his treatments over 3 weeks vs Dr Amato's protocol at 2 weeks. Since Joe is so anemic, it's best to wait until he's stronger. I am in daily contact with Amato's office though - it's like we're there!

Our home health aides (from Lifetime health and our own) are working out great. The help that we're receiving in the morning before the Lifetime health aide comes is has been wonderful. Kathy not only took great care of Joe, but brought us dinner and a plant! Kath - it put such a smile on my face to see the bright yellow mum in the pumpkin on my front porch. Martha Stewart - move over! Thank you! Harriett has been his morning aide, followed by Phyllis, who is just a God sent.

Joe's been getting a lot of guests this week which has been great. His sister Nanette spent yesterday with him as well as Scott Anderson. Folks from work and reffing are keeping him busy and happy. Bill spent the morning with him and left with a number of jobs - thanks Bill! Thanks to Fran and Silvana for also feeding us this week. Everything is just wonderful.

Will update more tomorrow. Everyone root for the Rangers tonight - in the cold rainy weather - they are sorely in need of a win!!!

Love
Vicki, Gina & Tom

Continuing to recover at home

2006-10-08T08:11:00.000-04:00

Joe continues to recover at home - yesterday he had a good day - this morning - not so good. He is not sleeping as much as before but is still experiencing a great deal of pain in his abdomen and his back. We have an appointment to see Dr Chen, the radiology oncologist, on Thursday to see about giving Joe radiation on his spine. We're hoping to see Dr Kohli the same day as Joe will already be out and about. His next round of chemotherapy should occur next Saturday if Joe's blood counts are high enough. Since I have not seen a copy of them, I am clueless as to if he'll be OK or we'll have to wait another week. I hate being clueless.......

We have much to be thankful for.

Pat and Don from Caldwell came over and put in a replacement window for us that we have from the manufacturer........
A number of visitors from work have visited and cheered him up......................
We have found a home health aide to come in from 12-4 daily (that Joe will like) with help from the Pulhamus'...................
Maureen's been overwhelmed with friends who can fill in the morning hours before our help can arrive to stay with Joe - visit and make sure that he's OK....................
Toni and a team are promoting Brian Geer's magic and the dixieland band's music benefit..................
Mr Cassarino continues to be very generous to us all amidst his own grief...........................
Tommy D came over to visit last night around 8 pm bearing almond cookies (Sorry Tom, I know that you told me to NOT tell Robin that you brought them to me & not her :) ....Joe happily munched Mr DiGirolamo's wonderful creations while watching law & order.

Today is sunny and quiet.

Blessings to all of the angels in our lives

Love

Vicki, Gina & Tom

Benefit for Joe Martuscello’s fight against cancer

2006-10-06T09:08:00.000-04:00

Martuscello Benefit Event Details

Title: Magic & Music

Benefit: Benefit for Joe Martuscello’s fight against cancer.

Entertainment: Brian Geer, Master Magician
Papa Joe’s Crawfish Stew Dixieland Band

Auction: Silent Auction featuring great items with values from $50 to $1000

Date: Sunday, October 22, 2006
Time: 6 – 8:30 p.m.
Location: Spencerport High School Auditorium
2707 Spencerport Road

Refreshments: Pizza/Pastries and Drinks. Featuring Pontillo’s Pizza

Tickets: $25 for Adults
$15 for HS Students
Cash or checks payable to "Vicki Martuscello (M&M)"

Contacts for Tickets:

Robin Pritchard
23 Osage Trail
Spencerport NY 14559
293-3735
rwpredfern@aol.com

Toni Zeiser
32 Princeton Lane
Fairport, NY 14450
223-2457
tbzeiser@aol.com

Donna Hadfield
7 Tyler Terrace
Rochester, NY 14624
594-1777
dhadfiel@caldwellmfgco.com

At home recovering

2006-10-05T14:33:00.000-04:00

Joe is feeling a little better every day. He is sleeping less, which is a good thing, and will be done with his antibiotics tomorrow. He is pretty thin and is weighing in at 158 lbs these days. We're doing our best to fatten him up!

The chemo treatment's side effects should be taking a toll on his blood counts by Saturday - day 7. We're combating that with Aranesp shots bi-monthly and lots of good vegetables, rest and fluids. Unfortunately he cannot take any vitamin or herbal supplements, but we're trying to get them in him via food.

He is enjoying visits from people and as long as no one has a cold, it's fine to visit. If you're feeling ill, please wear a mask if you come as his compromised blood counts allow infection to invade easily.

It's been a busy week and I am still in search of a home health care aide or nurse to fill in a good portion of the day, then continue to lean on you all to help me fill in the gaps! I know that Maureen has worked out a schedule for a bit. If anyone knows of a good home health aide, please give me a call with their number!

I appreciate all of the help and care that is coming our way. There's a terrific team of folks putting together a night of magic and music to help us defray these medical costs. Words alone cannot describe how blessed we are to have you help us in this manner. I am overwhelmed at the entire endeavor and have a hard time expressing our thanks. Set loose, this team has moved mountains. They're incredible! Toni, Maureen, Robin, Ann, Debbie, Kathy, Donna and Karen - the world is set on it's side with you in one room! While I am learning the ins and outs of insurance, there is still much to grasp. With God's help Joe will be well enough to continue the chemo treatment and be well enough to travel back to Houston after Thanksgiving for scans to determine if we've been successful. Your efforts in this and other fund raisers have allowed me to take him where we would not be able to alone. It's allowing me to hire help (if he doesn't fire them!) so that I can continue to go to work and feel comfortable that he is well taken care of. I only hope, someday, I can give back to you all what you've given to us - Hope.

Love
Vicki, Gina & Tom

Day care volunteers

2006-10-04T12:55:00.000-04:00

We would like to create a rotating schedule of volunteers to sit with Joe Monday through Friday.

A few hours either in the morning or afternoon would be of great help. Joe will have a visting nurse on a regular basis, so all that is needed is someone who can be near by if Joe needs assistance moving around or help getting things.

Please contact Maureen Cassarino with your availability.
Home: 585-225-4527
Cell: 585-738-4459
email: maureen@thegemlab.com

Recovering at home

2006-10-04T00:43:00.000-04:00

Joe was released on Monday - sorry that I didn't post - we have been pretty busy getting him back settled at home and getting the nursing service and supplies together. He is on oxygen 24/7 which was delivered late Monday. My dad's an old pro at it so he's been helping me learn how to use the large condensor and the smaller tanks if Joe is to leave the house. It took us a few tries to get the condensor in a place that does not keep us all up at night - it's pretty loud. But the oxygen is all set. We have set up the office on the first floor as a bedroom for Joe as he is too weak to get up the stairs at night. A hospital bed was delivered and we moved just a little furniture to get it all set for him. The last thing to get set up in the room is to hook the TV up to cable. This is tomorrow's task for Bill!

I worked the phones for a good part of today to set up a visiting nurse service as Joe is too ill to stay home alone. All the insurance will cover is 2 hours per day- and I fought like crazy to get that. It may start in a few days or a few weeks - as soon as they have found someone to cover the need. In the meantime I have hired, on a trial, a 4 hour per day visiting nurse service to sit with Joe from 11-3. I am going to give it a few days - they start on Thursday - and see how it goes. I am hoping that he gets stronger and won't need that level of care, but for now, he definately cannot stay home alone. I will most likely induce Maureen's idea of a rotating schedule to help me so that I can get to work for at least 4 hours per day. I know many of you reading have offered to help and I will take you up on your very kind offers.

Joe is still on IV antibiotics twice per day that we are administering and his pain meds have been increased. Today I think he was overmedicated and such we have cut back on it - I don't want to have him in pain, however, he slept all day and it was difficult to get him to wake up and focus, eat and drink. Tonight he was a little better, but he cannot seem to stay awake for more than 30 minutes before he is sound asleep again. I don't know if it's progression of disease, the chemotherapy treatment, the pain medication or a combination of them all. We miss his laughter and humor in the house.

I just want to tell you all how much I appreciate the love and care that have come our way for the last 10 months. From Paul setting up the blog to cards, prayers, calls, dinners, visits and fund raisers. Nothing that was done was not appreciated and if I didn't say thank you - then I am remiss. They say that friends are angels who pick us up when our wings have forgotten how to fly. This has been an incredibly difficult time for us all and we are holding fast on hope and prayer that this last ditch effort will be successful. I am hopeful because of the oncology website that we're on and the talk about the positive outcomes of treatment - the miracle has happened to others - - why not Joe? The days are darkest before the dawn - we are looking forward to a bright dawn tomorrow. Today was a not-so-great day. My dad came over to give me a pep talk - I guess I needed it. Tomorrow will be better. Every day we have Joe in it gives us hope for tomorrow.

So here's to a better tomorrow - even though the Rangers lost their home game to Webster Thomas - there's a brighter tomorrow. I'll keep looking for that rainbow.

Love,
Vicki, Gina and Tom

Going home?

2006-10-02T09:03:00.000-04:00

Joe had a good night last night - slept well and his pain seems to be better today. He started a new pain regime yesterday and allowed him to sleep on and off in the afternoon. If his pain is under control the docs are thinking that they can release him today. There is much to do to get ready for Joe to come home - but I believe we can get it all together. The doctors believe that he will be better off at home - he is at great risk of infection and the hospital environment is not the best place for rest! Dr Jones has released him and does not believe that the talc procedure is something that she believes Joe needs. She will keep an eye on him and if the fluid reaccumulates, she will remove it at that time. His breathing, while labored, is better than it was. He is still on 4 liters of oxygen. His blood counts look good, but will most likely tank in 7-10 days following his chemo treatments. To counteract that, Joe is on a series of medications to help boost his immune system and raise his white and red blood cells and platelets. We are keeping our fingers crossed that this treatment will interrupt the cancer cycle growth. He is stil weak.

Gina is hanging with him today as she has no classes (Yom Kippur) and will be a great help if he is to be released.

Thanks to all - for - everything

Love
Vicki, Gina & Tom

chemo update

2006-10-01T12:03:00.000-04:00

Yesterday was quite a busy day - we sprung Joe for 3 hours from the hospital to take him to see the homecoming parade and then went out to lunch at Applebees. Joe's brother Bill and his wife Chris came up to see Joe and joined us for the parade and lunch. Gina, Tom and Blake joined us as well. While he enjoyed the time away, he was quite tired when we returned.

At 8 pm he received his antibiotics and then the nurse began to give Joe his premeds for the chemo. He received his chemo at 9 pm - a push of the 1st chemo Adriamycin and a half hour IV drip of the Gemzar. He ate the rest of his lunch for dinner, we worked on a puzzle together and at midnight he went to sleep.

He had a restless night and is still in a good deal of pain, but we'er hoping to get that under control. Dr Kohli stopped in this morning and said if we can get his pain under control he will discharge Joe tomorrow. Hopefully he will gain some strength at home.

We are hopeful that the chemo treatment will be successful.

I will keep you all posted.

love
Vicki, Gina & Tom

Feeling better today!

2006-09-29T13:59:00.000-04:00

Today Joe is feeling much better- stronger and is eating more. He has not lost any weight since he's been in here - which is a good thing - and he is definately getting stronger with the antibiotics.

Last night we met with Dr Jones and the thorasic team. Their plan was to get another CT scan of his chest to see where the fluid was accumulating and then place a catheter drain in each side, separately, to drain the fluid completely and then place some talc in the pleural space. The talc will create friction between the lung itself and the chest wall. This way, there can be no additional fluid build up around the lungs. When asked where the fluid goes - the doc replied - "I don't know!". So off he went for his chest CT. After about an hour he returned victorious - they got not only the chest CT but -a head CT as well.

This morning the team came in and said that the head CT shows no tumors - which is good - but the chest CT shows additional lung tumors and the wall of the lung is thickening. I asked Dr Kohli and Dr Lyman if they could postpone the lung drain and talc procedure to do a round of chemotherapy. We discussed the pros and cons of doing chemo- side effects and continued immuno suppressed - but Joe decided that he wants to give the chemo a shot. The idea is to try to stop the cancer and then address the lungs. Continuing on the path of no chemo or cancer treatment leaves Joe's cancer running rampant throughout his body.

While Dr Kohli does not agree with Joe's decision, he agreed to follow-up and give the chemo a try. He will be writing the orders and hopefully, tomorrow, will be the day for the 24 hour infusion. He will most likely be in the hospital for at least one more week.

Joe told me that he feels energized to start a regime that, while may be tough, will at least be proactive. He's been pretty defeated since Dr Amato told us that the Trovax and IL-2 was not working.

I have been speaking to Dr Amato's office daily and they are 100% with us to have Joe try the chemotherapy.

So - positive prayers for this to work - the goal is to interrupt the growth cycle of cancer cells and get Joe some medicine to reverse the cancer.

We are very hopeful that this procedure will be successful. I know that there are many out there who disagree - but I ask that you please support Joe, Gina, Tom and I with this decision. It is an incredibly difficult one to make and we need all of the support that we can get. To do nothing would be to say that Joe was ready to die - and guess what - He is not.

With renewed hope, because that gets us through the day

Love
Vicki, Gina and Tom

Hospital Update

2006-09-28T07:49:00.000-04:00

Yesterday was not a bad day for Joe! His pain level is decreasing and he said he felt better. He is still pretty weak and his breathing is not great - he is still on oxygen. He had another EKG and Echocardiogram yesterday to determine if his heart is functioning properly as his heart rate is pretty high. All tests came back without issue. His ultrasounds on Tuesday showed that his internal organs are working well - so while there are cancer cells around his organs, they are not in them. The lungs still appear to be the problem.

Today they are going to assess whether they can insert a pic line in his arm for continued IV antiobiotcs as the docs want another 10 days of them infused. This pic line can also be used for the chemotherapy that he wants to try as long as his blood levels are acceptable. Dr Jones' office was suppose to see him regarding the fluid around his lungs but did not come up yesterday. The attending will contact her again today to see if they wish to pull additional fluid from the lung space to try to ease Joe's breathing. The fluid did not test to be cancerous and they belive it to be chylous fluid - not fluid leaking from lung tumors.

Today Dr Lyman and the team should be able to determine when Joe can come home. The attending physician promised to see the home health care department to get us additional nursing help and oxygen delivered to the house. If approved, he will have his chemo in the hospital as previously planned. Joe planed to talk to Dr Kohli yesterday - however - Dr Kohli did not visit with him.

But it was a good day - I went up at 1 pm and warmed him up his pasta dinner and along with his 20 below cocoa that he called Bill to get for him, he was a happy camper. I left to watch the Rangers/Athena game (Rangers won!) and video'd the game for Joe to see. Tom, Kate and I came back to the hospital after the game and he and Tom did a recap of the entire game - play by play! Kate brought cookies, so he happily munched cookies and watched the game.

He gets a little stronger every day, takes a little less pain medication and is more alert. We hope to get him home and resting more comfortably soon!

Love
Vicki, Gina & Tom

Infection update

2006-09-27T07:44:00.000-04:00

Joe remains in Strong Memorial hospital on day 6. He is doing much better though and gets a little better every day. He is having trouble getting a full breath and the tap on the lung pleural space really did little to help this issue. Most likely he will come home with oxygen. Because he has been experiencing so much pain, yesterday afternoon he went for an ultrasound of his liver, pancrease, gall bladder and bowels. We have not heard the results of them yet. I arrived at the hospital while Joe was in ultrasound. My brother-in-law Bill was able to stay with him during the whole procedure. Joe arrived back in the room at 4 pm and shortly after, Bill came in. Apparently he was dispatched to get Joe a "20 below zero cocoa" drink!! Apparently he was not only thirsty but starving. Bill had ordered him lunch which was also waiting in the room. They both told me about the procedure, drank their cocoa and Joe picked a little at his lunch.

Dr Kohli came in a little while later and said that he would be looking at the ultrasound and get back to us today as to what they found. The head CT that Joe had, while blurry, did not indicate any tumors in the brain (YEAH!) or issues with blood clots or swelling. Hopefully today we will know more. Dr Kohli thought he looked much better than he was and said he had to discuss with the team how and when to get Joe home.

Yesterday they also had to change the IV line in his arm as it had clogged. Apparently Joe slept through most of the procedure!

I have spoken to him this morning and he said he had a better night's sleep than the previous night and was feeling better - less pain in his gut and in his back. He was going to order breakfast and I told him I would see him at noon.

Joe wants to talk to Dr Kohli about reinserting a central line and still giving the chemo a try. Last night before I left we discussed his options and he is still wanting to give this a shot. I told him that I would make it happen.

Thanks to all for - - everything!

With continued hope,
Vicki, Gina & Tom

Infection Update

2006-09-26T07:38:00.000-04:00

Joe remains in Strong Memorial hospital fighting a staff infection. He is on the 6th floor, 3400 unit, room 27. He can have visitors, but tires easily.

On Sunday afternoon they removed his central line as it also is infected. They are keeping the abdominal catheter in place at this time as they do not believe that this line is a problem. The staph infection has invaded his blood stream along with his urine and abdominal fluid. Yesterday afternoon they once again tapped his left lung pleural space and removed a liter of fluid from around it to help ease his breathing. They also want to check the fluid to see if the staph infection is present there. Joe is on oxygen at this time as he cannot sustain the proper O2 level without it. He is in a great deal of abdominal, chest and back pain. He will stay on antibiotics for 10 days, when they will assess if he can have his central line reinserted or a pic line inserted so that he may have a shot at the chemo treatment. Without the central or pic line, they are unable to administer the chemotherapy. At this point, time is not on our side.

He has recovered from the confusion state that he was in and has returned to his normal humorous self. This is a huge relief!!! This morning, however, he said he had a rough night with pain. The procedure to removed the fluid is painful and he is struggling with the site pain.

Gina will be sitting with him this morning before she goes back to school and then Bill will sit with him until I get there this afternoon.

I do not believe that he will be released before Monday of next week.

Thanks to all for your support and help. Colleen, Sue, Fran, Silvana , Rose - thanks for bringing food to the hospital and my house. Roseanne & Dominic - the card and generous gift you gave me at the game made me cry. We are truly blessed to have you in our lives.

Thank you to my sister Toni and Bill. They came to the hospital to visit with Jamie and Amanda and were able to make us all smile. Thanks for coming to Mrs Cassarino's funeral with me and for helping to keep me sane. I know that I don't say thank you enough for all that you do, but you know how much I love you all.

Keep praying for our miracle!

Much love,
Vicki, Gina & Tom

In the Hospital

2006-09-24T08:17:00.000-04:00

Well, it's been a very scary 72 hours.

Thursday morning my dad took Joe to Strong Radiation oncology for a back x-ray and appointment with Dr Chen. He came home and was very tired, thus slept the entire afternoon. When I returned home from work we both went to Tom's soccer game - and he was fine - a little chilly because the night cooled down -but otherwise himself. At 2 am he woke up very confused and disoriented -not knowing who any of us were, himself included, and in a great deal of discomfort - not pain - but discomfort. He kept saying he had to continue to go to the bathroom. That should have been my first clue as to an infection, but because he was so disoriented, I believed him to be over tired -and thus I watched him through a very restless night. He began talking gibberish at 3 am and I finally gave him some additional pain meds to get him to relax and go to sleep. Sleep finally came at 4:30 am, however, upon waking at 6:30 he was no better- actually worse. He didn't know who Tom was or anything simple. He was clearly agitated and confused. I sent Tom off to school and called our visiting nurse and Joe's sister Roxanne, who he had been talking to and calling since about 3 am. She and Nanette told me that they would be here to help at 10 am. I tried to wait for them, and Dr Kohli's office - but he was getting worse by the moment so I called an ambulance.
Joe was admitted into the ED at 10 am and they began a series of tests to check for everything from infection to brain tumors. Gina came home and got Tom from school. Joe didn't know either of them or his sisters, or Paul or Maureen when they came back. Father Werth visited and gave Joe the anointing of the sick - Father Werth married Joe and I, and baptized Gina. Joe got admitted into 6-3400 (Oncology unit) at 6:30 pm and we were greeted from ED by our favorite nurse Jack and the nurse manager Patty. They, along with the entire Strong staff has been wonderful. About 9 pm Friday night the docs began a regime of antibiotics, believing he had peritonitis again, or another infection. "Stuff" was still growing in the lab to determine his exact infection. We had yet another rough night - restless and agitated. He still did not know where he was or who any of us were. In the morning he was a little better - knew me and himself, and when the kids walked into the room, he knew them. What a relief! They attempted a second brain scan, but Joe refused to lie still for it, so at this point we have no idea what may be going on inside his brain. However, late yesterday afternoon the infectious disease team told me that he is 'growing bugs all over' - blood - abdominal fluid - urine - and that they believe him to be on the correct medicine. They have ruled out meningitis and a brain swell, however, do want to see if there are tumors on his brain.

Yesterday afternoon he visited with his mom and sister Yvonne and Fred, and Rose and Lou Petrella - he knew them all. My dad came up and apparently he was sleeping - I ran home to catch a much needed shower! Last night he ate minimally but did know Ann and Gene when they came up and when I left at 10 pm he was finally, sleeping soundly. The hospital appointed a sitter for him overnight so that I could come home and get some rest.

So - I am headed back to the hospital and then to Paul's mom's funeral service today. My brother -in-law Bill will sit with Joe while Gina, Tom and I pay our respects to Mrs. Cassarino. I am hoping that he is better this morning. He was improving over the course of yesterday.

He is still pretty weak and has not eaten much. He is on oxygen because his O2 levels are low, but his vitals signs are strong.

I hope to see Dr Kohli today to discuss if he believes we can start chemo. Without it, the cancer will continue to grow. With it, we have hope.

Thanks to all for your help and love. Thanks to the Vadas family for cutting my lawn! Thanks Rose and Louie for the food - you fed us all! Thanks to Rox, Nan, Yvonne, Fred and mom for visiting. Thanks to the Pettinaro's for taking in Tom, and Thanks Lucy for keeping Tom safe and OK at school Friday for me.

With continued hope for a stronger Joe...

Love,
Vicki, Gina & Tom

Chemo update

2006-09-21T07:25:00.000-04:00

Yesterday Joe went to Strong and had an echocardiogram to ensure that his heart is healthy enough to withstand the chemotherapy treatments. All came out well there - his heart is strong and healthy. We all know that his heart is large and giving. Now we need to get the rest of him that way! He received 2 units of blood in an attempt to try to get his counts high enough so that he can handle the chemotherapy treatments. At this point, Dr Kohli does not want to proceed until his blood counts rise. Thanks Bill, for taking him yesterday - Joe ate well yesterday - rivaling Tom in his calorie count!

Today Joe is going back to the radiology department for a consultation with Dr Chen to have a few radiation treatments on his back as he is experiencing a lot of pain in that area. The radiation will not be curative, but perhaps will relieve some of the pressure from the tumors and give him additional pain relief.

Friday at 4 pm we will consult again with Dr Kohli to see if Joe's blood counts are high enough to proceed next week with the chemo. I pray that he is strong enough to withstand it. He wants to try it - wants to fight - we need to get his body to come to the party!

Thanks mom, for the money that you sent to us - we appreciate your generosity. Thanks also to Linda and Tony for the generous gift that you sent to us as well.

Joe's friend Brian Geer is a magician who has been wanting to have a benefit for Joe to help us financially as we continue to travel to Houston for Joe's care. My sister Toni along with a host of friends is working on the Martuscello March against Cancer. While we are just in the planning phase, I pray that Joe will be well enough to continue to travel to Houston and allow Dr Amato the time he needs to help us. If this benefit does not happen, please know that we are so grateful for everyone involved in helping us generate the funds to continue to fight. Words cannot express our gratitude and love for your continued never ending support.

Patty - I am adding the quote you sent to me yesterday. Thanks for the inspiration.

If, when faced with the bad, when told everything is futile, you can still look up and end the conversation with the phrase... "yeah....BUT.." then you still have hope. Never lose hope

We will never lose hope. For it's hope and faith that is getting us through each day. All of the prayers that are being said for Joe, the support and love from our family and friends, the support that I get at work here every day from Chuck, Tam, David, Jeanne, Yvette, Julie, Danielle and each of my peers and employees - it helps me to go on yet another day. Your love and concern has made a big difference in guiding us through the journey that we are on. Thank you. I hope, someday, I can repay the generosity and support that has been given to me tenfold.

Embrace every day - life is precious.

With love and continued hope,
Vicki, Gina & Tom

New treatment update

2006-09-19T15:35:00.000-04:00

Today was NOT the day to see Dr Kohli - he was unable to schedule him in the clinic and thus did not receive either the blood transfusion or the chemotherapy. We did, however, schedule everything.

Tomorrow at 8:30 am he will go to the clinic for blood typing and crossing. This is required before he gets any transfusion. He will then go to the basement for an echocardiogram. Before Dr Kohli administers any chemotherapy he wants to make sure that Joe's heart is functioning properly. Apparently the Andriamycin can be toxic to the heart. Joe was required to have heart tests before his IL-2 treatment, so, everything should be OK. He then will get 2 units of blood. Dr Kohli will have a consultation with him and set up the chemotherapy which, unfortunately, cannot be done at home but as an inpatient in Strong. When he and I discussed this he told me that we in Rochester do not have the technology that Houston has to administer the drugs at home, rather they have to be administered as an inpatient. Thus, Joe will be in Strong weeks 1,3,5 & 7 to have both chemo drugs given. He'll most likely be there 2 days. What am I talking about - this is Strong! Give it 3-4 days! ;-) While it bothers me that he will be in the hospital, the visiting nurse today told me that it is best for him to have it administered there if any complications arise. It is my best guess that he will be admitted on Monday the 24th for his first treatment.

I pray that he will tolerate the meds and that they will work to kill the cancer cells. I pray that in 8 weeks we'll be seeing Dr Amato's smiling face again - only this time with good news.

I took a ride around Spencerport and delivered dishes today - Anderson, Ferrante, Potter, Pecorino and Kwiatkowski families - thank you for your delicious foods. I trust you found your dishes and containers on your front step! I visited with Scott and Cindy for awhile today - Scott is looking good - strong - and maintaining a great attitude toward his battle. Together, the 4 of us - we'll fight this - and lend strength back and forth as it's needed - to keep Joe and Scott healthy.

This has been a tremendously difficult week - and it's only Tuesday! Thank you, all, for your support and love. Without it we would not be as strong.

With continued hope for a better tomorrow
Vicki, Gina & Tom

Heavy Hearts

2006-09-19T07:28:00.000-04:00

It is with a heavy heart that I am writing this post. Thanks so much to Paul for posting for me last night as I knew folks were wondering the results of Joe's CT scans. It was too hard to call - and no internet was accessible. We were so excited for this 8 week update - Joe had been looking and feeling better for so many of the 8 weeks - alas - the last 2 weeks have been pretty brutal. First the blood clot - then the coughing - followed by the fluid around the lungs - now tough news from Dr Amato.

The fluid in his lungs and collecting in his legs is a result of tumor load. He is unable to lie flat because the tumor growth in and around his lungs are suffocating them - thus he has to sleep and continue to be upright. The lymph system appears to have multiple places of new cancer growth, and like Paul commented, he has another mass where the kidney was removed. Each CT scan showed great additional tumor growth - where there was none in June. None of this was good news.

As always, the doctor has a plan as do we. First we will absorb the news, learn about and schedule in the new treatment plan, and forge ahead. This is no time to stop fighting - in fact - it's time to pull out all the stops! So, together, we will fight. We plan to see Dr Kohli today and schedule, or hopefully, begin his treatment. The medicine that Dr Amato has Joe on will be administered here in Rochester at home. His plan is to monitor him from Houston through Dr Kohli and I - and meet us back in Houston in 8 weeks. He told us that if Joe is well enough to travel and he sees us in the waiting room in 8 weeks he will know that the chemo - while a tough treatment - has stopped the cancer growth. We will then resume another trial, in Houston, to continue to kill the cancer beast. Joe will most likely spend the day in the clinic today- getting 2 units of blood and then getting hooked up to his Adriamycin pump. After that 24 hour infusion is completed then he will get a 1 hour infusion of Gemcitabine, most likely in the clinic at Strong. Blood work has to be done 2 times per week to ensure that his platelet and white/red cells counts are doing OK.

Adriamycin - also known as Doroubicin - is a type of antibiotic that is used only in cancer chemotherapy. It slows or stops the growth of cancer cells in the body.

Gemcitabine belongs to the group of medicines called antimetabolites. It interferes with the growth of cancer cells, which are eventually destroyed. Since the growth of normal cells may also be affected by the medicine, other effects will also occur. While it is used to treat many cancers, Dr Amato is using it because of the sarcomatoid features of Joe's clear cell Renal cancer - which is most likely the reason that all of the medicines he has taken thus far have not worked- and the cancer grew right around it. Joe has a 30-50% chance that this chemotherapy will stop or severely halt the growth of cancer so that Dr Amato can again try for a cure.

Yes - he will be sick. Yes - he will lose his hair. Again. But it will grow back - again. Yes - he has to stay on the Lovenox shots twice per day. Yes - he will get his Procrit shots weekly instead of bi-monthly.

So today we begin not only a fight - but a war. And there can be only 1 winner in a war - so we are waging our lives - literally - on winning this one.

Thanks to Maureen for keeping me together yesterday and through the long tough waiting period over the weekend. Thanks to the Pettinaro's who literally took Tom in nightly. Thanks to Toni for cooking for the kids over the weekend.

It is going to be a tough road - but together we can make Joe tougher. We have to. I will find a way.

Love,
Vicki

The news we didn't want to get.

2006-09-18T18:15:00.000-04:00

Vicki is unable to get a wireless connection where she is in Houston and has asked me to pass along the latest news. (Vicki, Joe and Maureen are due to arrive around midnight from Houston.)

Dr. Amato has informed Joe that he has had extensive growth of his disease during the past 8 weeks, including a 3-4 cm mass where his left kidney used to be. He has numerous growths in his lungs and lymph system. It appears that none of the treatments, the Sutent, Trovax nor IL-2 have had any significiant effect on Joe's disease. These treatments were designed to inhibit the tumor's ability to nourish itself (Sutent) or stimulate Joe's own immune system to fight off the cancer (Trovax and IL-2).

Joe will begin a serious chemotherapy regimen tomorrow under Dr. Kohli's care. Right now, there is no longer any need to travel to Houston. Joe will be treated with Gencitabine (One hour per week) and Adriamycin ( One 24-hr dose every two weeks) at Strong Memorial Hosptial. These drugs are designed to intefere with the cancer cell's ability to divide and repair themselves.

Dr. Amato says that studies have shown that patients previously treated with IL-2 have a slightly better chance of responding to these therapies than patients who haven't tried IL-2. He says that we will know in a matter of a few weeks if Joe is going to respond.

Our love and prayers have lifted Joe, Vicki, Gina and Tommy for these past 9 months. We won't let them down now. They need our love more than ever.

A sunny day in Houston!

2006-09-16T19:05:00.000-04:00

It's been a wonderfully warm sunny day here in Houston. Last night Joanie called - our clinical research trial administrator - and told us that Joe's blood work is still in the tank and wants him to have 2 more units of blood. We tried to get him into Methodist today to have it done, but we were not successful. He will have 2 units of blood given to him in Amato's office 8 am Monday morning to help boost his blood levels.

So today has been one of peaceful rest - in the sunshine at the pool - and in the room. Maureen and I spent a few hours just driving around Texas, exploring, finding quaint shops that we both love to browse. She found a backpack for her great-nephew and yet another Vera Bradley purse (Yes, she is obsessed). We had great fun looking at all of the 'stuff' in the store. I found unique things for Gina and Katie! :-)

Tomorrow will be yet another day of waiting - then we're going to be heading to the office for our news. Joe has been pretty tired and has been just resting - and we're trying our best to keep him comfortable (his feet are pretty swollen) and not nervous about whatever we hear on Monday.

So - send positive vibes our way - and thanks Scott for sending Joe all of your strength. You are truly an amazing person. The news will guide us to our next journey - either the same 8 week cycle of Trovax & IL-2 or a new path for Joe's best chance at survival and cure.

Thank you for all your support,

With Hope and prayers for good news on Monday
Vicki

In Houston!

2006-09-15T15:45:00.000-04:00

Here I sit in Dr Amato's waiting room - Joe and Maureen are comfortably sleeping in recliners while I am logged in and doing a little work - a lot of reading - and quiet retrospect. The office is pretty quiet today - it's Friday and they only have clinic hours as Dr A does his research on Fridays. I pray that he has the proverbial light bulb go on over his or one of his research assistant's heads while they are learning about Kidney Cancer. I just spent some time talking in my best Spanish to a woman whose son is ill and has been treated here at the clinic. They seem to be here as often as we are and both she and her son have been friendly to Joe and I. The office waiting room is like a social circle - people share stories and lend support to one another. When she walked in I rose to meet her and asked her how Carlos was doing - he has passed away. Seems this beast called cancer has taken another life - a young life - and I grieve for his mother.

Joe had his blood and urine workup done this morning. We're waiting here for 3:30 to take him for his CT scans. Joe is pretty tired and wants to rest - so we'll go to the hotel and let him rest after he's done.

We are praying that the outcome is positive and that the Trovax and IL-2 are working.

With hope and continued prayer
Vicki

Fluid removed today

2006-09-13T20:57:00.000-04:00

Today Joe had quite a busy day! In the clinic at Strong they removed 1.2 liters of fluid from the pleural space around his left lung. There is fluid around the right lung, however it is minimal. The process began with having some blood work first completed, the fluid removed, a chest X-Ray (to make sure that they didn't puncture the lung - good thinking huh?! :-) ), then a blood transfusion. He's still very anemic and Dr Kohli thought that the blood transfusion would be a good thing to do before we travel to Houston. The fluid removal did not take too long (20 minutes total) but his back is pretty sore from the needle insertion. He described the procedure as uncomfortable, but he did experience "lightening pain" in his chest area periodically as they removed the fluid. He had quite a coughing fit afterwards which the nurse said is normal, because the lungs are expanding. We will have to watch him carefully to see if the fluid reaccumulates. They sent the fluid to cytology for culture and to determine if there are cancer cells present. The fluid could be bacterial (pneumonia or fungal) which antibiotics will cure.

We ended this long tough day with dinner at the Olive Garden with the Cassarinos! It was a nice way to end a pretty stressful day.

We are now home, and he's doing well - tired - but well. He should be able to lie down and have less trouble breathing. He was given a breathingdevice to help him expand his lungs - he is suppose to use it once every hour - to help open the lungs and keep them clear from foreign objects.

Tomorrow at 8 am he will be going back to the clinic for another blood transfusion. While it sounds bad, he had a transfusion in Houston in July and felt much better afterward - more energy and less tired. He's only had one shot of the Procrit medicine to help aleviate the anemia .

Pending no issues with his lungs and/or transfusion, we are leaving Friday morning at 6 am for Houston. Head, Chest, Abdominal and Pelvic CT scans are going to be completed on Friday afternoon. On Monday morning we see Dr Amato with his results, and either begin another regime of Trovax/IL-2 or start another protocol. We plan to be home Monday night. Please send good healing/cancer regression thoughts to us as we travel to Houston! Thank you to Mrs Rowen for paying for our hotel room. The generosity of our family and friends has been overwhelming. We are grateful for your help!

Gina will be coming home to spend the weekend with Tom keeping the home fires burning! Friday the boys play soccer at Penfield - GO RANGERS - we know you're ready for a win!!

Love,
Vicki, Gina & Tom

Into Strong Memorial tomorrow

2006-09-12T13:48:00.000-04:00

Dr Amato has decided to have the fluid around Joe's pleural space removed tomorrow before we go to Houston. We'll be in Strong at 1 pm for the thorascentis by Dr Jones. The procedure should not take too long - they'll watch him for a bit afterwards to make sure that he is OK to come home. The removal of the fluid should make him more comfortable, especially as we travel this Friday to Houston.

Thank you for all of the well wishes as we embark on yet another hurdle in the road. That's OK, we're getting good at jumping over them!

More news tomorow when we're done!

Love
Vicki, Gina & Tom

Awaiting info from Dr Amato

2006-09-11T21:20:00.000-04:00

Joe saw Dr Carolyn Jones today - a pulminary oncologist at Strong concerning his chest CT scan. Dr Kohli was looking for a pulminary embolism and didn't find one (blood clot) which is good news. Dr Jones went over the scans and cited 'something' happening in the lungs. Joe has had a small pleural effusion for quite some time now, however, it has grown. The fluid is not IN his lungs, but around one of them. The effusion looks to have grown since the CT scan in Strong in April, however, Dr Amato has more recent scans from July which, too, cited the fluid. So what do we do? We are waiting for Dr Amato to call us tomorrow with his decision to tap the fluid here in Rochester or wait for his own tests Friday in Houston and make a determination as to what is happening in the lungs then.

If Dr Amato wants to have the fluid removed and tested, he will have the Thorascentesis on Wednesday morning at Strong Memorial as an outpatient. There is a risk to puncture the lungs if done improperly. Although they complete the procedure under ultrasound guide , it's no secret how uncomfortable I am with anything done at Strong memorial - - - we're a little worried about jeopardizing our trip on Friday with Dr Amato. If he does have the procedure, he cannot take his Lovenox (blood clot) medicine Tuesday night or Wednesday morning.

So here we wait. Dr Jones was unclear as to whether it's an infection (either pneumonia or a bacterial fungal infection), fluid accumulation or additional cancer tumors in the lungs. At this point we do not know. If they do tap the fluid perhaps Joe will have some relief from the coughing and breathlessness that he is experiencing, plus perhaps he can lie down to sleep. At that time they will culture the fluid and take it to cytology where they will determine if there are cancer cells present in the fluid. Since there are cancer cells present in his abdominal fluid, there is a good chance that they are present in the pleural fluid as well. They also talked about applying a talc into the pleural space to stop the fluid from building up - however that is an inpatient procedure. Again, we will wait to see what Dr Amato suggests.

In the meantime, we had a wonderful dinner provided by the Potters and Ferrantes with Paul and Maureen while we sat and reminisced about his mother. Thank you both so much.

We are still hopeful that the Trovax/IL-2 trial is successful with Joe and that on Monday the 18th we will receive positive news from Dr Amato, even though we are now faced with this additional issue. Whatever the outcome, we will find a treatment that will work for Joe - of that I am positive. So for now, we will maintain a quiet watchful wait to see what Dr A has in mind. Above all, we trust he and Dr Kohli to make the best recommendation for Joe's treatment.

My mother was released from the hospital today and is home happily resting comfortably. Thank you to my parents for their generous gift of money to keep us going to Houston.

My Godfather emails me jokes and wonderfully spiritual quotes daily which keep me going. Thank you Uncle Tony - I am very lucky to have you as my godfather! I thought I would share his thoughts that he sent to me today:

Good Morning !!!!
This morning when I wakened
And saw the sun above,
I softly said, "Good morning, Lord,
Bless everyone I love"

Right away I thought of you
And said a loving prayer,
That He would bless you specially,
And keep you free from care.

I thought of all the happiness
A day could hold in store,
I wished it all for you because
No one deserves it more.

I felt so warm and good inside,
My heart was all aglow.
I know God heard my prayers for you,
He hears them all, you know.

May God hear my prayers to have Joe cured.

With love and continued hope
Vicki, Gina & Tom

Life

2006-09-11T07:13:00.000-04:00

Paul's mom, Shirley Cassarino, passed away a little after midnight on Sunday morning after battling for such a short time with lung cancer. She was 70. Her battle has ended and she is no longer in pain. We will all miss her.

All of us are grateful for Paul as he set up this blog and it's been a wonderful way to communicate to you all. For those wishing to send a condolences to Paul & Maureen their address is:

Paul & Maureen Cassarino
35 Charit Way
Rochester, NY 14626

For those of you I've talked to, my mother should be released from Rochester General Hospital today. She has had her medicine regulated and is doing better - still weak - but better.

Today we will find out the results of Joe's CT chest scan concerning the fluid in his lungs. At this point we are hopeful that it is just fluid that we can take care of and we will be going to Houston for his restaging on Friday.

With continued hope for a better tomorrow,
Vicki

No IL-2 week!

2006-09-06T12:58:00.000-04:00

And here we thought that this week Joe would have a break from taking daily shots! He is tolerating his Lovenox shots well for the blood clot in his leg. He will begin is Procrit shots as soon as the pharmacy ok's the prescription. This is a once every 2 week intermuscular shot.

Joe has developed some fluid in his lungs. Right now we are not sure what course of action the doctors will take. He has had a pleural effusion all along - however - now it's causing him to be a little short of breath and cough periodically.

We are still on to go to Houston on the 15th for his CT scans and restaging. With the fluid build-up in his legs and now lungs, traveling will be a little more difficult, but we will manage.

Thanks to Marsha for helping me this week with his shots while I am traveling. Thanks to the Ferrantes and the Pettinaro's for feeding Joe and Tom...feeding Tom IS a tall order! Thanks to all for checking on Joe daily.

I'll be home Friday night - just in time for the Spencerport Soccer tournament. Gina, too, is coming home to watch the boys play and celebrate Blake's birthday. I hear Tom and Richie Ferrante were in the Brockport news as "up-incoming players" for the varsity team. Way to go guys - we are VERY proud of you!

Much love,
Vicki

Last day of IL-2 this treatment schedule!

2006-09-01T07:01:00.000-04:00

Today marks the last day of IL-2 for this 8-week schedule! Joe will have 2 weeks off before we go back to Houston for his re-staging.

Joe has unfortunately formed a blood clot in his right leg up near his groin. He has to wear surgical stockings to bed at night and keep his feet raised fairly regularly during the day. Unfortunately he has to have 2 shots of Lovenox daily. Thanks, Marsha, for helping me out last night.

"Deep venous thrombosis (DVT) refers to a blood clot embedded in one of the major deep veins of the lower legs, thighs, or pelvis. A clot blocks blood circulation through these veins, which carry blood from the lower body back to the heart. The blockage can cause pain, swelling, or warmth in the affected leg. Low molecular weight heparin (Lovenox) is a newer option for treating DVT at home. This form of heparin is given twice daily by injecting into your skin. The pharmacy dispenses the drug in prefilled, easy-to-use syringes"

So just when Joe thought is was safe to get away from injections for 2 weeks - something else has reared it's ugly head! We will be watching this very closely to ensure that travel to Houston on the 15th will not harm him.

He also will begin getting Procrit in a few days for his anemia. Unfortunately, this, too, is injectable. Since it's a deep muscle injection, it won't feel good. Good news is that it does not have to be administered daily, but weekly. Also good news is that he is not supposed to move too fast, so I'll be able to catch him pretty easily as I chase him around with needles and patches of alcohol!

Today is the first actual game for the Spencerport Varsity soccer team! They won their scrimmage against Pittsford Sutherland on Monday. Keep your eyes on #23 - Tom - as he makes his debut today in Hilton at 3 pm! Joe and I will be there in our Ranger colors. Even Cameo is a Ranger pup - she wears blue and gold to the games!

While the weather here in Rochester will not be conducive to a picnic, we want to wish everyone a safe and relaxing Labor day weekend!

With today the first of September we are inspired as a new season is upon us. New life, renewed spirits and hope for a positive outcome in Houston for Joe, regression and positive therapy for Scott Anderson and a therapy choice for Mrs Cassarino to help her on her journey.

"Hope sees the invisible, feels the intangible and achieves the impossible"

With continued Hope and Love,
Vicki, Gina & Tom

Dr Kohli visit

2006-08-31T14:54:00.000-04:00

Yesterday Joe saw Dr Kohli after his central line wsa changed. Dr Kohli was pleased with how good Joe looks and went over his blood work with him. Joe is Anemic and will be starting some medicine to correct that today. Dr Kohli and Dr Amato are determinining which medicine, Procrit or Aranesp to put him on.

Right now Joe is at the hospital having an ultrasound on his legs. Dr Kohli was concerned about the fluid retention and wanted to rule out blood clots in the legs. The IL-2 has a side effect of fluid retention, but it's best to be safe than sorry (as my mother always says!)

We're thinking good thoughts about his legs that there's no blood clots and with only 2 more doses of IL-2 this cycle, Joe should be feeling better and better as the next weeks come to pass!

In and out of Strong in a day

2006-08-30T13:31:00.000-04:00

Today Joe went into Strong Memorial at 10 am and had his central line changed. On Monday the nurse was unable to draw blood from the central line and directed him to Dr Kohli's office. The nurses determined that either the line had moved or it was clogged. If it moved, a new line would have to be inserted. If if was clogged, the clinic could flush through the line. The radiologist examined Joe this morning and determined that the line had shifted and a new line had to be placed. Using the same wire through the vein, they removed the plastic line and tips and inserted a new line using the same wire. The radiologist believes the the first line was defective - too short - thus the issue with it after only 5 months of insertion. The new line theat they inserted has clamps where the other one did not. The procedure took about 30 minutes using only novacaine in the affected area. He is doing well. At 3:30 today he has an appointment with Dr Kohli to have a general check up, refill some prescriptions and talk to him about pain management and general wellness. We are hoping Dr Kohli gets more involved in Joe's care here in Rochester even though we are dependent on Dr Amato for his cancer treatments.

I'll post again after Joe sees Dr Kohli!

love
Vicki, Gina & Tom

Week 6 of IL-2 begins

2006-08-27T12:25:00.000-04:00

Wow - I sat down after finishing up the slide show for Tom's travel soccer team (a yearly event for us all) and decided to write a little on the blog. Much to my surprise was a very heartfelt letter from Paul. If I had a brother, I would want him to be just like Paul. He's been my adopted brother for more than half my life! How lucky we are to have friends like he and Maureen - and the thoughts he shared - as well as the time he and Maureen spend helping us - amid his own mother's ill health - well - it speaks volumes as to the type of people they are. We are truly blessed.

As I was reading it - I don't know when life's new normal took us over. I guess it's just like a normal day that I change Joe's bandages or give him a shot - or one of the kids goes to get new medicines or take him somewhere. Life goes on - regardless if one person has cancer. But the biggest thing is that we have support from so many people. People who don't know us well stop me in the store, or at a sporting event, or a soccer meeting - and ask about Joe. They lend their words of support and these help sustain the kids and I. We don't think we're doing anything extraodinary - there is no price on life - so the new normal becomes finding a cure. Thank you all for your support. It's been a godsent to us!

Joe has been feeling OK since we came back Monday from Houston. His legs have reduced to their normal size and while he does experience side effects from the IL-2 he is tolerating it well. One more week and then he has 2 weeks off. His abdomen is pretty sore from the 25 shots he's had over the last 5 weeks - but I'm pretty stubbon and usually find a good spot that doesn't hurt him too much! He's not sleeping well lately - abdominal pain still plagues him - but he's tolerating it better with the pain patches.

So, think good thoughts as we move on to week 6. Gina has left for her 3rd year of college and once again the house is quieter with her gone. Tom has been busy with varsity soccer and a picture of Doug Potter and he were in the Brockport-Spencerport post! There's a star living among us!

Scott Anderson continues on his radiation and chemotherapy doing well with both. Mrs. Cassarino is again home from the hospital recovering from her latest treatment. Both are in our daily prayers.

Love
Vicki, Gina & Tom

Your love has made a difference

2006-08-26T21:29:00.000-04:00

Much love and the joy of life abound at the Martuscello home!

It has been quite a while since I have contributed to these pages. I see great value in having you hear directly from Vicki for news of the family. I am so pleased that this method of communication has proven to be so useful for her and helpful to you.

Anyone to whom I am important in their life knows by this time how much Joe and his family mean to me. So many times during the past months, the very first question to me is "How's Joe doing?" and without fail, the second question is always "How's his family?". Without a doubt, Joe's battle has been difficult for his family. I wouldn't begin to minimize that at all. They have suffered with feelings of helplessness as the most important person in their life has fought relentlessly to overcome this terrible disease. To let you know how they are doing, I thought that I would share some thoughts with you.

Last evening Maureen and I spent some time with Joe, Vicki and the kids just watching "House" reruns and chatting, the same type of pleasant activity we have been sharing for most of the past thirty years (starting long before we had children) . It made me think about how Joe's illness has affected all of them.

I want you to know what a wonderful sense of love runs through that house. If it were not for the pile of medical supplies in one corner of the kitchen and Joe's scarred belly on display for all to enjoy, (his fever had just started after the IL-2 injection.) one would never know the severity of what they have been enduring for the past eight months. Tommy was hopping around between the living room and his computer. Gina was curled up on the love seat nursing a bit of a cold, but still had enough spunk in reserve to tease both her father and her brother. Vicki and Maureen chatted away about the latest Vera Bradley purse styles. Life is good. Life is a bit tougher right now, but life.....is good.

There is no "woe is me" attitude to be found anywhere on Shannon Crescent. Sure, we all wish that Joe didn't have to feel so lousy so much of the time, but the time for lamenting has long past. This family is an inspiration to those who face adversity in their life and a wonderful testament to the power of love and the courage that can be drawn from a strong family. That family, by the way, extends beyond the four of them, to all of you who have supported them with your wishes, prayers, assistance around their home, fund raising, food and pure love. Many of you reading this are not related by blood or even marriage, but that makes you no less family than anyone else for all that you have meant to this family for your care and concern.

Words alone do not do justice to the feelings of gratitude that Vicki, Joe, Gina and Tommy feel. Where you see it is on their faces, in their smiles, in the gentle way they sleep, in the way they laugh and giggle, in the way they choose to meet each new day with an attitude that most of us would find difficult to muster under similar circumstances. Be very proud, not just of them, but of yourself, for unabashedly showing someone that you love, that in fact you do love them. Each meal, each ride to the doctor, each phone call, every effort made toward this family has bolstered their confidence, reassuring them that they will succeed. Your love and support has enabled them to maintain some semblance of a normal life amidst a nightmare of circumstances.

We have all learned, in one way or another, that life is far too short. I hope that the success of the Martuscello family, the glory that is the love that they share, reinforces in all of us the importance of giving of ourselves to those who need whatever it is we can offer.

IL-2 week 5 and Houston in a day!

2006-08-22T07:11:00.000-04:00

Yesterday Joe and I left very early out of Buffalo to go to Houston for his necessary clinical blood work. Thanks again to David Sands for picking us up at 3:30 am and taking us to Buffalo for the flight. Unfortunately, there were no flights out of Rochester. We left at 6 am, got into Houston at 10:41, rented a car and drove to the doctor's office where he got his blood and urine samples. I say samples of his blood but he was ready to have the nurse insert a tap she took so many vials! Joe has been responding better to the pain patches that were prescribed last week, we got a refill on the prescription and got back into the car for the airport. If the pharmacy were quicker we probably could have made the 2:15 United flight to Washington, but alas, we were on the 5:23 flight into Chicago and arrived in Rochester at 12:05 am. A weary Gina and Tom picked us up outside. We got home about 12:30 where I prepared Joe's shot and gave it to him. With the added travel precautions, I didn't have the necessary paperwork to take Joe's IL-2, sterile water and needles with me to Houston to give him his shot in the middle of our trip. I also was concerned that he would experience some side effects on the plane that would be tough to manage, so we opted to give him a late treatment. Joe took his preemptive side effect meds at 2:30 am and at 4:15 am I got up and got ready for work. Today will be a little slow for me! All in all, though, the trip was long but we both agreed that it was nice not to waste the time and money in staying overnight if we do not have to. His legs were pretty swollen (actually ankles were the size of his calves) after so much sitting on the airplane and he was struggling to walk. We were able to use wheelchairs through the airports and were blessed with short distances between flights. Week 5 of IL-2 begins. He will have this week and next week and then a 2 week break from all medicine. We fly back to Houston on the 15th for blood work, scans and restaging with Dr Amato on Monday the 18th. If he is responding well to the treatment (meaning regression or no progression of the cancer) we will continue this course for another 8 weeks. All of the nurses in the infusion center commented on how much better he looks than he did when we started this trial. Although his hair is more salt than pepper, it is growing back in and his beard and mustache are more pepper than salt! He is still draining a liter of fluid a night but the fluid appears to be slowing down. Dr Amato's words echo in my head - "take care of the cancer and it will take care of the fluid". I pray that the treatment is taking control of the cancer.

While we were jetting to and from Houston, Dan Campbell got a new pool pump for us and hooked it up. The pool is a lovely shade of green, isn't it Danny? Thanks so much for your help! You truly are a wonderful friend and angel to us both.

On the positive side, school sports have begun and Tom has made the varsity soccer team! Kate made the varsity volleyball team and my neice Amanda made the JV field hockey team in Fairport! We will certainly be busy watching our young athletes this fall season! Go Rangers!

Gina has one more week of work before she heads back to Buffalo for her junior year. She's all moved into her apartment, which looks great! It won't be the same without her home - as it never is! :-(

Happy birthday today to Maureen!

Love,
Vicki, Gina & Tom

IL-2 week 4 and Houston visit

2006-08-14T20:11:00.000-04:00

After leaving Sunday at 6 am out of Buffalo, Joe and Bill arrived home just a little while ago from their Houston trip. All went well. Joe got a Trovax shot this morning and necessary blood work for the trial. Bill was instrumental in getting him better needles for his IL-2 (those that we had were too long and thick) and a pain patch to help manage his pain (thanks Amy for the info). While the weather was quite warm, they rented a car and were able to navigate through Houston!

Thanks so much Bill for taking him to Houston, paying for the ticket and the car. Your love and support mean a great deal to us. I hope that you read this after having a nice long nap after your 7 hour drive back to Rhode Island. Hope you find both Chris and Maria better, too!

We also heard today that Joe's sister Rosalyn is in the hospital in Syracuse. Roz - we hope that you are feeling better! :-)

Joe and I will be heading back to Houston on Monday the 21st for his blood work. We're going to give it a shot to go up and back in one day! We'll see if this is a better way to travel since he only needs some quick blood work. September 15th Joe, Maureen and I will travel back to Houston for Joe's CT scans - we will find out the results on the 18th.

Send lots of healing thoughts to Rosalyn and Scott, who started his chemo and radiation today.

Love,
Vicki, Gina & Tom

IL-2 week 3

2006-08-09T13:32:00.000-04:00

Joe continues to do well on his third week of low dose IL-2. The side effects are there, but managable. He's tolerating them well with some swelling in his legs, his blood pressure is a little low, he's fatigued and is experiencing some muscle aches and pains. He continues to drain 1-2 liters of fluid daily from his abdomen, which won't seem to heal. But he's eating well and in good spirits! With the break of the hot weather, he's been able to enjoy the outdoors and worked with Paul to line our driveway with basketball regulation 2 & 3 point shooting lines!

He's off to Houston on Sunday morning, being accompanied by his brother Bill. Joe has another Trovax shot scheduled along with regular blood work requirements. I will be moving Gina back into Buffalo Sunday, hopefully accompanied by some strong helpers - Blake, Tom and a to-be recruited friend to haul Gina's "STUFF" up to her 2nd floor apartment minus the elevator! The good news - we don't have to move her home or to Buffalo until she graduates! YEAH. :-)

Joe and I will be heading back to Houston on the 21st for blood regimine work then we're home for 2 weeks. He will continue low dose IL-2 the weeks of 8/14, 8/21 and 8/28. He then has 2 weeks off all medications. His next set of CT scans is scheduled September 15th with his restaging on the 18th. We are hoping and believing that the medicine that he's taking has stopped this beast of a disease. If we are successful in regression of the cancer, he will continue on this regime another 8 weeks. If the disease has spread, we will leave ourselves in Dr Amato's capable and caring hands to search for another cure.

Some special people in our lives are also undergoing their own health battles -

Kate's dad Scott Anderson will begin his radiation and chemotherapy on the 14th of August. Please pray for a successful cure.
Paul's mom Shirley Cassarino has been diagnosed with terminal lung cancer. I have known and loved the Cassarino family for 33 years. Please pray for her.

Do not follow where the path may lead. Go instead where there is no path and leave a trail

With hope and love,

Vicki

IL-2 week 2

2006-08-02T07:20:00.000-04:00

Joe continues to do well on his second week of IL-2 - I do see evidence of the shots in his abdomen though as they said. His current worst side effect is itching! But he needed no additional meds last night when he got his shot! He's a trooper!

Attached picture from my parent's anniversary. Look at that handsome gray haired guy! (Dad, mom, Amanda, Jamie, Gina, Blake, Tom, Kate, Joe, Toni, Bill)

Congratulations to Tom's soccer team for taking First place in the 17 year old division last night! Way to go Spencerport United!

Happy birthday to my mom tomorrow!

"You can't change the wind: you can however adjust your sails"

Love
Vicki

Home sweet home

2006-08-01T06:44:00.000-04:00

We arrived home last night at 7:15 pm - what a wonderful sight Rochester, NY is!

Joe's appointment at the clinic on Monday was pretty quick - just some blood work (17 vials) and we were on our way. His next appointment is August 14th for blood work and a Trovax booster shot. Joe's brother Bill will be accompanying him to Houston for this appointment.

We are thankful for all of the support that we got in Houston.

Thank you mom - Joe's mom paid for a night at the hotel - your generosity and love are wonderful and appreciated.
Thank you Lori & Tom - for paying for part of our stay at the hotel
Thank you Maureen for picking up all of Joe's IL-2 and supplies. I was able to give him his lower dose shot last night with again, minimal side effects.
Thank you to Robin and my Valeo friends who have once again come through with money to help support us as we continue to travel for Joe's health.
Thank you to Dan and the Caldwell gang for scheduling and paying to have our driveway sealed
Thank you to Tom's soccer team for continuing to feed us - Eileen - your dinner last week was much appreciated by Tom and Gina as we were away and Amy - dinner last night was delicious! Boy do I need a glass of that wine......

All of your love and support have helped to keep us going. I am hoping and praying daily that this treatment will help get Joe in the NED stage - "No evidence of Disease".

Believe me - we could not have done it all without the love and support from our family and friends

Much love,
Vicki, Gina and Tom

Houston - day 5!

2006-07-28T16:18:00.000-04:00

Houston - day 5. We finished our first week of the highest dose IL-2 with pretty good results. Joe's blood counts are a little off, but nothing that the doctor didn't anticipate on IL-2. The good news is that he has 2 days off - Saturday and Sunday - to recouperate. His protein levels are pretty low - because of draining the ascites- but we're trying to combat that with Boost, Boost breeze and lots of protein by mouth. He did walk home from the clinic today - the long route - and promptly fell asleep! If fatigue is the worst side effect - we're doing great.

We have one more clinic day for blood work and at 2 pm we hit the air to come home! We will then be home for 2 weeks. August 14th is his next appointment here in Houston to get another Trovax shot and blood work. Joe's brother Bill will be accompanying him to Houston for this endeavor.

Our weather this weekend shows to be beautiful so I hope we can get outside for a little fresh air and sunshine.

Thanks to all!

Love
Vicki

Houston Day 4!

2006-07-27T17:00:00.000-04:00

Houston - day 4 - and the sun is shining - Yeah!

Went to the clinic today for our shot - an easy day - just spent a little under 4 hours there! :-) Anyhow, I've been fully trained and am now the nurse of choice giving shots here in Houston! Joe, once again, experienced minimal side effects from his shot and took it like a champ. He's resting comfortably right now. We have not gotten the results from his ascites fluid or the blood that they took - but he appears to be much better than the other day! He will continue taking the antibiotic and hope for the best! He was feeling so good this afternoon that he walked back from the doctor's office to the hotel! This is good news.

We plan to stay here over the weekend, having to change hotels for one night as they are upgrading the air conditioning here at the Holiday Inn. We'll be moving to the Best Western for the day and night. It' s close and should pose minimal issues. Monday we'll be traveling home- I can't wait to get there!

Our thanks to Lori and Tom DeMay for the generous gift sent to us here in Houston - words cannot express our thanks for your kindness.

Love
Vicki

Houston - Day 3

2006-07-26T18:14:00.000-04:00

Today was another eventful day in Houston and at Dr Amato's place. Joe woke up in pretty bad pain at 2 am - abdominal pain - thus the day began very early for us. We called our research assistant who got us into the doctor bright and early and he took a look at Joe. I was concerned about an obstruction in his bowel or a perforation in his bowel or intestines, but the doc believes that he has an infection (another one) and put him on a strong antibiotic. I was able to hike to the pharmacy and get him the antiobiotics and a strong pain killer that he needed. It's pouring here in Houston - POURING- so traveling is - well interesting on foot! :-)

Day 3 of IL-2 went well again. Some shakes, fever and chills, but all in all, he is doing well with the medicine. And this is the worst of the 6 weeks! I don't want to get too optomistic....afraid that Murphy's law will come and bite us again! Thursday and Friday we'll pop into the clinic for Joe's shot - and then back to the hotel. We are hoping to see our nephew and neice Joe & Adrianne Martyniuk over the weekend if Joe is feeling well.

Continued prayers for Joe to make it through this journey with a postive outcome! Also prayers to Tom's friend Jake and Kate's grandmother Kathy who both got in car accidents this week. We are grateful that they are both physically fine though their cars are hurting!

Much love to the Pettinaro's who are taking Tom on vacation with them tomorrow - -fully knowing how much he eats! We are grateful for your friendship and support.

Love
Vicki

Houston - Day 2

2006-07-25T16:59:00.002-04:00

Day 2 of our trek to Houston is going well. Between the raindrops we walked to the clinic this morning where Joe received a second liter of blood to help elevate his counts and then nurse Johnnie gave me the IL-2 lesson - it was not too bad. 3 pm was the second IL-2 shot. So far, so good. I have all of our counteractive meds awaiting to deliver when he needs them. While the medicine is cumulative, he's doing pretty well. Friday will be our worst day, but he has Saturday and Sunday off - then weeks 2-6 are 1/2 the dose of week 1 - - - then he has 2 weeks off. Each cycle is 8 weeks followed by restaging - if he has regression we go on - if he has progression - we find another cure. This trial is for 2 years. Year 1 is Trovax and IL-2, year 2 is Trovax only.

Thanks to all for the prayers and good thoughts coming our way. This is a hard road that we're traveling and we are grateful for the help along the way.

Happy birthday to our nephew Brendon!

Love
Vicki

Let the healing begin......

2006-07-24T21:34:00.000-04:00

Well, after much to-do, we arrived in Houston on Sunday at 5:30 pm. Took us 13 hours to get here, but we're here! Too many planes were either broken or late - but with a little finesse and a lot of coercing - we got here - not the way we planned -but here. We're staying at the Holiday Inn Medical center - about 1/4 mile from Dr Amato's.

This morning we took the trek (I walked - Joe wheeled) to the good doctor's place to begin the process that we have all waited for in the last 7 months. He got a bunch of blood work done and then his Trovax shot at 1 pm. Since his hemoglobin level was so low, they had to give him a pint of blood before the IL-2 shot - and I had to find a pharmacy to supply us with the medicines we need to counteract the side effects - - -after 5 pharmacies and a tearful phone call to Maureen, our tech took pity on my poor tired feet (I was on foot finding the pharmacies) and drove me to CVS about 5 miles away - I was attempting to walk it to get the meds - so we literally just got back from the clinic - it's 8:30 pm Houston time. He got the IL-2 shot in his belly at 7:27 pm. I am anxiously sitting here waiting for the side effects to take over....

Side effects include fever, chills, rigors, nausea, low blood pressure, swelling and a general feeling of ickiness. So far, he is a champ. We are premedicating him with Tylenol for fever, Aleve and Zofran for Nausea and Demerol for chills. I purchased pedialyte and Gatorade for if his blood pressure drops. They said that the side effects will occur in about an hour and last 4 hours. After that - he will be very sleepy.

Tomorrow we will go back in around 10 am to get another liter of blood and his second IL-2 shot. Wednesday we go in for the IL-2 shot only, Thurs and Fri we're on our own with the IL-2 shots here in the hotel, Saturday and Sunday he will be sleeping and getting some recovery time. Monday he has more blood work and then we take off for home at 2 pm. IL-2 is on schedule for Monday - Friday for 6 weeks, then 2 weeks off. The effects will be cumulative so side effects may escalate as he builds up the IL-2 in his system.

Please pray for continued strength for us to go on and for this trial to work for Joe to have regression of his disease.

I appreciate all the help that you folks are doing for Gina and Tom at home.

Love
Vicki

Continued saga with Ascites

2006-07-19T07:56:00.000-04:00

Joe continues to fight the fluid build-up in his abdomen - getting 6 liters of fluid drained twice a week. Because of this, he is weaker and losing more weight than he can afford to! He will have another abdominal catheter inserted Friday at Parkridge in an effort to drain the fluid slowly and help relieve the pressure. He's eating, but we're draining more protein out of him than we can keep in.

We are all set to leave on Sunday morning for Houston. We'll be there until the 31st. On Monday he will get his second Trovax injection and after an hour they will give him the IL-2 injection. We'll monitor his symptoms and hopefully have enough meds to counteract any that he has (fever, chills, nausea, low bp, headache). Paul found a great worksheet for me on the internet so we can record the symptoms and chart the meds that we used to counteract them. On Tuesday they'll train me to give both the IL-2 injection and the medicines to counteract side effects. On Wednesday I will do the administering under their watchful eyes. After that, I am on my own (Yikes). He will get a higher dose of IL-2 his first week and 1/2 that dose for the remaining 5 weeks. He does get Saturday and Sunday off! We'll do this (6 weeks on/2 weeks off) for a year assuming that he responds positively to the medicines. It just has to work.....

So wish us well as we set off for Houston. Be careful on the road as Tom passed his road test! Another teenage driver has emerged! :-)

Thanks to the support from the guys at Caldwell who shaved their heads. You are priceless friends to Joe.

Happy 50th anniversary to my parents on Friday. We love you.

Additional prayers for Scott Anderson are needed as his biopsy has revealed malignant tumors in his brain. We are praying for his recovery.

Love,
Vicki, Gina & Tom

Houston Update

2006-07-10T14:06:00.000-04:00

Our Houston travel plans have changed due to the fact that Joe didn't get his Trovax until the 7th of July.

So - now we'll be in Houston:

July 24-31 Trovax booster and IL-2 begins
August 14th Blood work
August 21st Blood work
September 15th - 18th - restaging
September 25 Blood work

If anyone out there knows how I can make plane reservations easily with flexibility, please let me know! I've tried Travelocity - there's no refunds and no changes allowed - meaning I have to bank tickets for use later if something changes - and for us - things are not ever smooth! I can use some advice from those who travel! Thanks!

Let the healing begin......

Trovax began

2006-07-08T14:10:00.000-04:00

It was a hot few days in Houston and our frustrating un-luck followed us too. But all was not lost......Joe got his first Trovax shot on Friday at 1:45 pm. Only 5 days later than he was suppose to start - but heck - at least it happened! Trovax is a live vaccine that is made in Oxford, England and was shipped to Dr Amato's office - unfortunately some paperwork snafu stopped the shot on Thursday afternoon when we arrived - next time was 6:30 am Friday morning - changed to 1 pm Friday afternoon. We only had to change our travel plans (for the 6th time) but I was adament that we were NOT leaving Houston without the shot! I dug my heals in and stood as tall as one with my small stature can stand! (Gina calls it 4 ft of angry). Alas - he has begun the trial. And there were no side effects. NONE. That was wonderful as well. The entire way home I kept asking him how he felt - - and he said he was reaching deep to feel something- NOTHING. That's music to my ears. Now, let's hope it works.....

So home we are for a week then back off to the good doc's house for 7 days - July 17th - 24th - as he will have a Trovax booster on the 17th and begin low dose IL-2 that week. This is an injection and side effects training time for me. The 24th they will check his blood levels and then we can travel home for a 2 week period where he'll get IL-2 nightly Monday - Friday via injection. Weeks 2-6 are 1/2 the dose of week 1 - so if week 1 goes well....weeks 2-6 should be a walk in the Houston park!

The fluid buildup has continued and he had to have another pericentisis in Houston - 6 liters drained....but he's a trooper and afterwards is ravenous!

This week Joe will visit with Dr Kohli to see if he will continue to monitor his care here in Rochester and work in conjunction with Dr Amato. We believe he'll be open to this venture. If not, we have a backup plan in mind.

So - keep the spirits high - the first 8 weeks are the hardest as one doesn't know if it's working. By 9/11 though - we will know. Let's hope that day is a postive one.

A Heartfelt Happy Birthday to Joe's mom on Monday! Have a wonderful day and a great birthday mom!

Love
Vicki, Gina & Tom

Houston here we come - - again!

2006-07-02T12:57:00.000-04:00

Last Tuesday we (Paul, Maureen, Joe and I) traveled to Houston to see Dr Amato. While Joe was pretty tired, he held up well through the airports and 2-2 hour flights. Our appointment on Wednesday was at 11 am, but reading through the oncology list-serve that we're on we knew that we would be waiting a LONG time to see Dr Amato. Turns out we saw him around 4 pm - he talked with us until about 5:30. His initial consult read the scans that we brought and he gave us some sad news - that Joe has mets in his lungs - one in each - about 1 cm large. We talked about the fluid that has reaccumulated in his abdomen despite the shunt and he said, matter of factly, "we take care of the cancer, the fluid will go away". He was definitive that the Sutent is NOT working and that the tumors have continued to grow in spite of the Sutent. He gave us 3 options that he was thinking of for Joe -
Escalating Nexavar, RAD-001, or Trovax and low dose IL-2

He said that he needed to see additional testing before he determined which clincal trial would be right for Joe. He then set us up for tests on Thursday with a follow-up visit to him right after.

Thursday was busy from dawn to dusk with testing (MRI/CT scans) and fighting with Blue Choice for a referral number. The folks at Methodist hospital along with Amato's staff are wonderful though and worked with us to get what the good doc needed. After we were done we scooted back to the 20th floor to see the results. Amazing, he had Joe's scans right on his computer and he showed us everything. There is more bone involvement than he thought - with mets to each of the hip areas and pelvis moving up the spine. He didn't address the shoulder which we know has bone involvement. He showed us the tumors on his lungs and we were all amazed at how much fluid is in his belly - chylous ascites - which still plaques Joe today. Because he has no tumors in his other soft tissue organs (Liver, pancreas, stomach, bowel, intestines) he chose to put Joe on the Trovax/IL-2 trial. This trial consists of a shot of Trovax (a vaccine derivative of small pox) with low -dose IL-2 - the drug that we had scheduled Joe to have at the very beginning of his diagnosis. Every 8 weeks Joe will be 're-staged' meaning he'll have all of the necessary scans to determine if the medicine is working (regression of tumor) or not (progression of tumor). If he is regressing, we'll remain on the trial. It is a 2-year trial. Trovax is given as a booster and IL-2 is given 5 days on/2 days off - 4 weeks on/2 weeks off at home by me. Side effects of Trovax are NONE :-) and low dose IL-2 similar to the interferon that he was on. On Friday they took another 5 liters of fluid from his abdomen.
On Monday Joe will have a few more tests done here in Rochester and on Wed morning 6 am we'll be back inflight to Houston to start his clinical trial.
Our schedule to return to Houston is:
July 5th - Trovax injection
July 17-24th - Trovax injection and IL-2 begun, blood work the 24th (have to be there a week as it's his first week of IL-2)
Aug 7th - Trovax booster
Aug 14th - Immuno blood work
Sept 8 - CT scans
Sept 11 - see Dr Amato for results and re-staging

All in all, I believe we have hope. Dr Amato is everything that we heard he was and more. His wealth of knowedge coupled with a wonderful sense of humor (he never stopped busting on poor Maureen) makes for a terrific doctor. He has given us back some hope. Hope because if this trial does not work, he has others. Hope because he won't give up. Hope because he wants to take all of the worry from us. Hope because he cares.

Thanks to all who helped while we were away - Tom and Gina were in good hands! Thanks to Blake for keeping Tom occupied when Gina left town! Gina is currently enjoying a few days with her cousin Bryan Carroll in his school town of Georgetown (and loving every minute of it)! Thanks to Paul and Maureen for coming with us. Thanks to all who donated funds so that this could be possible. Thanks to all who called and inquired about Joe and the kids.

Please put Kate's dad Scott Anderson in your prayers as he undergoes a biopsy on a brain tumor next week. Our thoughts and prayers go out to he and Cindy.

Love,
Vicki, Gina & Tom

Almost done with Radiation!

2006-06-23T07:50:00.000-04:00

Well, Joe has only 2 more radiation treatments - which is great news! The radiation makes him very tired - - although he has completed the cycle on his shoulder, he is still receiving it in the pelvic and hip region. Today and Monday - then he graduates! He saw an orthopedic oncologist on Wednesay who is concerned with the cancer growth in his pelvis/hip region - he had a CT scan yesterday to assess the bone damage to determine if there is a need for a rod to be inserted into this area for stability. We'll find out the answer to that question in about a week. My hope is that he does not have to undergo further surgery. It will take him about 2 weeks to recover from the radiation and get ready for IL-2 here at Strong.

We're off to Houston on Tuesday.

Joe, Gina, Tom & I are tremendously humbled by the outpouring of generosity from Caldwell manufacturing who had a luncheon fund raiser for us and the Spencerport soccer house and travel club who also held a donation fundrasier for us. The generosity of you all has been overwhelming and we are very grateful for your support. The money will be put toward getting Joe and I to Houston as many times as necessary to cure him if high dose IL-2 here in Rochester is not effective. While we're praying that he is in the small percentage that gets a full response, we need to have another avenue if this is not the outcome. I am confident that Dr Amato will have something in his bag of renal cell tricks to evict this cancer from Joe if he does not respond to IL-2. There's just too much living to do yet! Words cannot adequately express our thanks to you all - for the time and effort you all put into doing these fund raisers, but mostly for the knowledge that we are not alone - we're never alone when we have such a huge wonderful group of friends and family. Your continued unconditional love and support is heart warming.

Thank you doesn't seem adequate enough for all you have done. There's too many people to publically thank (and I would only miss someone anyhow!) so THANK YOU ONE AND ALL! :-)

Next week will be a busy one for Joe but it's also a huge step forward in taking control of the disease and working together for a solution.

Much love,
Vicki

Treatment Update

2006-06-15T10:47:00.000-04:00

Yesterday was a busy day for Joe and doctors!

After having his radiation treatment in the morning he headed to see the nutritionist. He's doing well but told to eat more! Dan - bring over that sub now!!! :-) After that we headed to see Dr Kohli. Dr. Kohli agrees that now is the time for high dose IL-2 treatments for Joe. This is wonderful news! Joe took his last Sutent pill on Tuesday night and will be off the drug for a month in preparation of getting high dose IL-2. He has to complete a series of tests before he's admitted including EKG's, bone and CT scans. Once these are complete he will be admitted to the hospital for IL-2 treatments. The treatment takes 15 minutes to administer, are administered every 8 hours for 5 days. Flu-like symptoms (multiplied by 1000) occur approximately 2-3 hours after administering. The nurses will be able to counteract most of the side effects (high fever, low blood pressure, rigors, chills, shakes, nausea) with other medicines. Because of this, sorry, but there is a no-visitor policy.

We are heading off to Houston on June 27th to see Dr Amato. We need a 'door number 2' if IL-2 fails. Dr Amato is on the cutting edge of renal cell and has clinical trials at hand that others do not. While we're all optomistic that IL-2 will work, reality is that it has a total response in 7-8% of the population, a partial response in 8-20% of the population and zero response in the rest. Because of the low odds, it's prudent to travel to see him now, while Joe is feeling better and strong. If we need him in the future, our initial contact will have been made and options given to choose from.

Much thanks to the Caldwell gang for taking Joe to radiation daily!

We'll keep you posted. Now is the time for concentrated positive energy and prayer to Joe - that the IL-2 will be successful and he'll be back on the soccer field in no time!

Love
Vicki, Gina and Tom

New news from Roswell

2006-06-12T07:52:00.000-04:00

We saw Dr Wong on Friday the 9th for an updated visit and see if he was now willing to give Joe IL-2 since the fluid appears to be under control. After what was a long wait, we were all pleased with his diagnosis - that he believes that there is no further growth in the bones and that the Sutent is indeed working! Since his last scans, Dr Wong sees no clear evidence that the Sutent is not working to kill the tumors. He believes that his last bone scan was negative for 'hot spots' and feels that the tumors are being controlled by the medicine. He also was surprised that Joe is on Sutent daily - the normal protocol is 4 weeks on and 2 weeks off. Joe's been on since early March with only a one week reprieve. Dr Wong will be talking to Dr Kohli to understand his thoughts concerning disease progression - then will be back in contact with us. Bottom line - if Sutent is working - he sees no need for change. If the disease does progress, he is more than willing to give Joe high dose IL-2 at Roswell. He feels that he will tolerate it even with the fluid and is willing to give it a shot. However - if the current treatment is working - he doesn't feel the need to introduce a more invasive therapy at this time.

Wednesday we see Dr Kohli and we have a number of questions for him! Thanks to Ray Lanzafame, we're reading cutting edge information on renal cell cancer and have learned of a number of new drugs that are promising for cure and/or life longevity. Those we will discuss with Dr Kohli as well as taking a break from Sutent before we travel to Houston on the 27th. The Sutent, along with the radiation, is taking a toll on Joe's overall feeling of well being. He is very tired and losing his beautiful thick hair! The fatigue concerns us all as the trip to Houston will be taxing for him. BUT - we're looking forward to seeing Dr Amato and getting another expert opinion on the treatment course.

For now - we're jazzed with the information from Dr Wong and excited that at least Joe has the opportunity for IL-2. There's no words to thank the Lanzafames for fighting to get the shunt in Joe and convincing the doctors that it was the right move.

For now - Joe is eating and sleeping, but was able to see one of the tournament basketball games this weekend that Tom played in.

Thanks to all for sending over dinner - he is enjoying the meals a little at a time!

Love
Vicki, Gina and Joe

Treatment Update

2006-06-08T16:45:00.000-04:00

Wow, it's been a busy few weeks.

Joe felt well enough to attend Caldwell's steak dinner with his friends at work. He even stayed to play cards with the troops. Thanks Dan Campbell - for thinking of Joe to bring him and taking care of him while he was there. It was just what the doctor ordered!

Today was Joe's first radiation treatment at the Cancer center at Strong. It was pleasantly uneventful! He was marked (with literal markers but also tatoo'd) on his shoulder, pelvis and hip for proper radiation placement. Now that he's been through his first treatment, he will continue for 14 more (continuous Monday - Friday) until done. This will, we hope, kill the cancer cells in his bones, strengthen them and eliminate pain in the areas. The good news is that he felt no pain and was feeling well afterward. The side effects include fatigue and redness of the skin area.

Tomorrow afternoon we will venture back to Roswell Cancer center to see Dr Wong. Our goal here is to get a thumbs up for high dose IL-2 treatment. Joe's been doing GREAT with the fluid in his abdomen - the shunt appears to be working well for him and/or the fluid is reducing - which would be the best news! Since he was tapped before Memorial day he's not experiencing any abdominal distention and he is eating normally. Last night was his last TPN (IV feeding system) meal! This is WONDERFUL news for us all!

We are still on track to see Dr Amato in Houston (Methodist hospital)on Wednesday June 28th. While the oncology list serve states that 'you could wait 4-9 hours to see the doctor' we're still excited to see what he can offer Joe to put him in remission. Thanks to Donata Sands and Gloria Sampson for finding a wonderful website that works to send cancer patients out of state on corporate jets for treatments. Maureen has already dug into this and we are going to try to see if we can use their services pending Dr Amato's treatment plan. We are hopeful that Joe will qualify for one or more of his trials. My sister worked tirelessly through the Blue choice system to get this approved - - -- thanks Toni - can't live without you!

Other thanks:
Thanks to the Pettinaro's and the entire Spencerport United BU17 team for making us dinner every Monday night. You are all our angels.

Thanks to Don Cameron for continuing to send Joe Dixie CD's for his listening pleasure.

Thanks to David and Donata Sands for the lovely statue of St Jude

Thanks to the Andersons for their continued unfailing love, cards and inspiration to us all. We love you Kate.

And lastly thanks to my children. While I was away on business they took charge and took excellent care of Joe...didn't miss a beat...from TPN to medicine to calling the doctor and visiting nurse service....to feeding Joe good food...to making him comfortable to sit at Tom's soccer game and keeping him company at home....even with Gina in school and working full time...and Tom managing school and soccer.....their love and attention is unprecidented and I am so very proud of them. They, along with Blake and Kimmi are always there to lend a helping hand. I am, by far, the luckiest mother in the world.

Vicki

Radiation update

2006-05-30T12:32:00.000-04:00

The Radiology Oncology group has recommended that Joe receive 10 treatments of Radiation to his shoulder, pelvis and hip. We are awaiting their call to schedule these sessions. While the first session is 1 & 1/2 hours, the remaining ones are approx 30 minutes, with the actual treatment only 4-5 minutes of the 30...the rest is set up! (Sounds like there's a lean continuous improvement event in there!) He has to have his treatments in 5 consecutive days on, 2 off, then 5 on, with a Monday being the begininng date. We are hoping that there's an opening beginning Monday June 5th. We are also scheduled to see an Orthopedic oncologist to determine the extent of the legions in the bone and if there is a possibility that he may need rods inserted into his shoulder and pelvis to prevent bone breakage. I certainly hope that this does not come to pass - he's had enough surgery!

Friday Joe underwent a pericentisis to remove some abdominal fluid - the shunt is working but he's producing more fluid than it can move - so he was a little 'backed up'. Much thanks to Pat and Ray who got him in AND out of Rochester General in about 1 & 1/2 hours. True to form, our friends at Strong wanted to admit him for a 4-5 day stay - -- - through emergency no less! AUGH. The Lanzafame angels allowed us to have a holiday weekend at home and we are most grateful.

Joe was able to see Tom march in the Memorial day parade and see his Dixieland band before their performance. He was happy to see them as he has not seen them in quite a while.

MUCH thanks to Patty and Tom Bosch for coming over and opening our pool! Words cannot express how wonderful you've been to us. With their help along with my sister and brother-in-law, father and Paul, Jamie, Amanda, Gina and Tom - our yard is now ready for the summer. Well, don't look too closely at the weeds! We all pulled together and got it done in a few hours and had time to enjoy our first summer cookout with chef Toni!

This week posts no doctor visits however the next few are going to be busy! So, we'll enjoy the nice weather and Tom and Gina's soccer games and keep praying for our miracle. One day at a time.

"Cherish your wishes and your dreams as they are the children of your soul and the blueprints of your ultimate achievement"

Love
Vicki, Gina and Tom

Oncology Update

2006-05-25T09:27:00.000-04:00

Joe's visit with the nutritionist yesterday was productive - he is moving in the right direction nutrionally and she is beginning to wean him off of TPN within the next 2-3 weeks. What a relief it will be for him to not lug around his trusty backpack every night! With Tom's soccer games well underway, it will be nice for him to sit there unencumbered!

Dr Kohli's news was not as bright. The ascites (fluid) is now showing malignant cells. We see Dr Riggs this afternoon to ensure that the shunt is OK to be there with the malignant fluid. The MRI of his right shoulder came back with scans showing many lesions. Due to the amount of lesions there and in his pelvis area, along with the fact that the cancer has spread, Joe will be receiving radiation therapy on those areas. This therapy will kill the cancer cells and help to strengthen the bones so that they do not fracture. Yesterday he received a treatment of a new drug for bone mets called Zometa. It is a 15-minute IV drip versus the 2-4 hour treatment he had been receiving.

We are scheduled to see Dr Wong at Roswell on June 9th. If he cannot offer up a treatment option due to the ascites still being a menace, we are planning on going to Houston to see Dr Amato. He has been hailed as a leader in renal cell carcinoma treatments and is on the cutting edge of clinical trials. There has to be something to stop this monster.

Your continued support and love are most appreciated. Joe is stronger and much more open to visitors so if you've been thinking of visiting - come on over!

Home again

2006-05-18T14:23:00.000-04:00

Joe was released yesterday afternoon from RGH with a few more stitches but a lot less fluid! He is experiencing a little pain from the surgery but overall doing well. He was able to eat for the first time without feeling nauseous and dizzy! He finally was able to lie down flat to sleep and didn't experience heartburn or pressure in his abdomen! He ate a good breakfast this morning and is on his way to gaining a few much needed pounds. The doc stitched up his abdomen where the catheter was and although it still leaks a little, we know that the shunt is working because his stomach is not distending. While his lymph system may never heal, he won't be suffering with the fluid accumulation any longer. I only wish we did this 2 months ago! We see the vascular surgeons again next week to remove the stitches and watch the sites where the shunt was inserted.

He will be on both TPN and actual food for awhile to build up his weight and his strength. He has to take it slow for awhile but is happy to be eating again.

We see the nutritionist and Dr Kohli again Wednesday the 24th and he will have his 3rd Bisphosphonate treatment for his bone cancer that day as well. We have scheduled an appointment with Dr Wong at Roswell on June 9th to determine if Joe can now be a candidate for the IL-2 treatment.

Until then we're going to try to fatten him up and get him strong for treatment. And thank God that he's home feeling better.

Thanks for all your prayers and cards.

The Shunt is in!

2006-05-17T06:31:00.000-04:00

In what was a very quick operation, the cast of Dr Riggs, Dr Geary and Dr Lanzafame were able to insert the shunt into Joe yesterday afternoon. While they posted 2 hours in the OR, they took only 40 minutes to complete the surgery. His past peritonial catheter has been removed and the shunt was inserted into his abdomen using three thread areas. The device was threaded from his abdominal area over his rib cage (where there's a manual pump inserted) and into his vein at his collarbone area. The pump works while he is lying down via gravity to move the fluid from his abdominal area back into his vascular system where it should be in the first place. If accumulation occurs he can pump it manually to work. Sitting up shuts the pump off, but he has the manual override. He was able to eat jello, broth and other clear liquids last night. There is still some leaking occurring at the site where his previous catheter is and there is a bag attached to collect the ascites - however they feel that this will seal up on its own within a few days. If it does not, they will stitch the area. Besides a high potassium level last night, he was doing great. He is quite sore in the sites where the shunt was inserted but that's to be expected. Pending his blood work this morning, he should come home. He's pretty thin, no big belly anymore, and our job is to get him some much needed nutrition that will stay in his body so we can finally give him the medicine he needs to fight the cancer. The shunt will stay in place until they feel that the lymph system has closed up - however - it can stay in place forever if need be. They removed about 2 liters of fluid from his abdomen before the surgery.

Much thanks to the Kwiatkowski's for bringing Tom and Jake to the hospital for me. Also to Ann for feeding the kids!

This is a picture of Tom, Kate & Joe (and Cameo!) before their Sophomore dinner dance.

Surgery Date!

2006-05-12T16:07:00.000-04:00

Joe's surgery to install a Denver Shunt will be on Tuesday, May 16th at 2 pm in Rochester General Hospital. He's listed as a 23 hour stay patient - I don't know how long he'll be there.

He'll be in the capable hands of Dr Riggs and Dr Lanzafame with his anesthesiologist being Dr Guadnino who was his doctor during his kidney removal.

Let the healing begin........................

Relay for Life

2006-05-12T14:39:00.000-04:00

Garlock is participating in a Relay for Life here in Wayne county on June 2nd and 3rd. I have joined Team Garlock and am going to walk in honor of Joe. If you wish to sponsor me you can go to our website www.acsevents.org/relay/ny/palmyra find the walk for life in zip code area 14522 and look at Team Garlock. My name is there as a participant.

We are selling purple and white wristbands that say HOPE on them for $2.00. We are also selling luminaries (bags with lights) that will line the walk with names of those who are survivors, battling or lost the battle with cancer. These luminaries are $5 apiece. I have bought 4 with Joe's name on them. Some members of Team Garlock that are walking in honor of Joe.

Thanks for your support!

Oncology visit/Ascites Update

2006-05-12T08:46:00.000-04:00

Our visit with Dr Kohli on Wednesday afternoon revealed the written results from the cat scan that Joe had in April - that the cancer has indeed progressed in the bone area as the preliminary results showed. He is still taking the Sutent pills but has ceased the Interferon injections as Dr Kohli does not believe that they were helping to cure the cancer. The latest news in Renal Cell indicates that the combination of Interferon and Sutent is not the right course of treatment - that the Sutent alone may work to stop the cancer from progressing. While Joe's cancer has progressed, the rate of progression has slowed - giving us a chance to try either the high dose IL-2 or the stem cell transplant to cure. He also indicated that the Sutent takes 8-12 weeks to show that it is working - Joe was scanned after only 4 weeks on the pills. He won't have another cat scan until June. Good news is that there is no growth to internal organs, just the bones. He has an MRI on Sunday morning on his right shoulder to determine the growth of cancer in that area - it was not covered under the cat scan.

Yesterday we went to Rochester General for his lymph angiogram. True to our luck lately, RGH was unable to perform the test as they had not performed it in 16 years, nor did they have the equipment to perform it! So, the medication the night before (that made Joe very ill and kept him up all night long), getting him up and about at 6 am and rushing to get to the hospital along with doing general prep was all for naught. They sent him home with their apologies, and we are awaiting a scheduling date to insert the Denver shunt. Dr Riggs office will schedule it for next week. We are looking forward to the day that Joe is not in pain, can eat a decent meal and not be on TPN! That day should come soon after his surgery!

Dr Kohli said Joe's fatigue is caused by the cancer, the Sutent pills but mostly from the fluid in his body. His blood pressure is still unstable. We are praying that the shunt will eliminate the fluid from leaking and alleviate some of this discomfort. The eliminination of the ascites will allow us to go to Roswell for high dose IL-2 and give us a chance to kick this cancer out of Joe.

Much thanks to Dan Campbell and Matt for putting up Tom's basketball net! I am very happy that Gina is now home from college for the summer! This weekend will be busy with Tom's sophomore dinner dance, Blake's graduation and Mother's day.

Please keep him in your prayers. Happy Mother's day to all my female friends and family!

Love,
Vicki, Gina & Tom

Home at last!

2006-05-05T09:19:00.000-04:00

True to our past experiences at Strong, one discipline does not communicate clearly (or at all) to another! The docs were all ready to release him on Wednesday - we're all packed up and smiling only to have the nutritionist put the skids on his release...frustrating to say the least. While I don't believe that she did anything in the subseqent 24 hours (except annoy Joe and I), we finally sprung him Thursday at 1:30. I wisked him from Strong to Rochester General where we met with Dr. Riggs, a vascular surgeon. He took a look and listen and determined that he wants to see the lymph system in action, therefore he scheduled Joe for a lymph angiogram on May 11th. After seeing the results of this, they will schedule him for insertion of the Denver Shunt. Joe is a good candidate for this procedure and the docs believe will solve his issues.

They have him back on a low fat diet along with his nightly TPN, he's slowly being reintroduced to food - with a small belly it's been a slow process. Eating along with the TPN is generating a lot more chlyous ascites fluid, so we're draining at least 2 liters a night.

He will see Dr. Kohli on the 10th for an oncologist visit, the 11th is the lymph angiogram, and he has an MRI on the 14th (Yes, Sunday!) to determine what the extent of cancer is on his right shoulder bone.

He is still weak but feeling better and happier to be home than in the hospital. Thanks for all the cards and letters - - he is bummed as he will not be reffing the Empire Cup this weekend - but Tom will be playing so hopefully he will feel well enough to come and watch him play - and WIN! :-)

Springing him from Strong!

2006-05-03T10:35:00.000-04:00

Joe will be discharged this afternoon from Strong Memorial hospital!!! His infection is cleared up and he will be sent home with a 1/2 TPN and 1/2 food diet. Dieticians will determine just what he can eat.

Tomorrow at 2:30 we will consult with the vascular surgeon (Dr. Riggs) at Rochester General Hospital to determine when they will insert the Denver Shunt to re-route the fluid from his abdomen to his vascular system - this will heal the lymph system, allow him to eat and resolve the fluid once and for all. Dr. Lanzafame said that he would be in the hospital overnight for this procedure. Once we find out all the details of it, we'll make the decision. I believe that Joe wants to do this to resolve the fluid.....only this time the surgery has to go off without a hitch!!

We drained him dry last night and removed 6 1/2 liters of fluid from his abdomen. That's a lot of fluid!!! He attempted to eat a fatty meal to see what would happen - he ended up drinking a milk shake and nibbling at french fries and a hamburg - preliminary results showed that fatty deposits were in the fluid thereby concluding that the fluid is being generated by the lymph system, NOT the liver. Multiple tests showed that the liver is functioning properly but the docs at Strong would not conclude this - so they did the test. We are grateful that his liver is functioning properly. This test concluded that the leak is a result of the surgery process and needs a surgical solution. It is nice to see Joe so much more comfortable without all the fluid in his abdomen! His inability to eat much is due to his stomach being so small as he has not eaten in 33 days.

More info as it unfolds. God Bless the Lanzafames & Cassarinos.

Things are really moving now!

2006-05-02T12:43:00.000-04:00

Divine intervention or are we incredibly blessed to have such smart friends?!

Yesterday at work Pat Lanzafame spoke with a surgeon at RGH and found Dr Tripp who had just successfully performed a Denver Shunt operation on a Chylous Ascites patient last month! He, along with Dr Geary, the vascular surgeon who removed Joe's lymph nodes in February performed the surgery. Dr Lanzafame spoke with Dr Kohli and spelled out the procedure that the team of 3 at RGH would like to perform on Joe. Dr Kohli is very conservative, but with Ray's insistence, he soon believed that this issue which has been plaquing Joe for the last 10 weeks CAN be solved surgically. The surgical team at Strong Memorial Hospital took Joe for an ultrasound to determine if his liver is functioning properly. Results this morning show that his liver is FINE and functioning as required. His gallbladder has some 'sludge' in it but it is also working fine. This was the last test to give the docs the assurance that the ascites fluid is DEFINATELY not from the cancer, but from the surgery.

We need to get Joe out of Strong and into Ray's office for a consultation/examination. Then we need to have this problem repaired at Rochester General by the best doctor that I've ever met - Ray! :-)

While the shunt operation won't cure Joe's cancer, it will put us in the right fighting position.

Maureen and I are running parallel paths with research and inquiries. Dr Richard Childs at the NIH in Bethesda Maryland answered her email within the hour with literature and information how to solve this issue. He is the pioneer of the stem cell protocol that Joe could possibly be a candidate for - once the ascites clears up! I am awaiting information from John Hopkins hospital and Dr Amato in Houston Texas regarding his past experience with ascites, the potential for IL-2 and the latest cancer drug TroVax to see if Joe is a candidate. Maureen is working with Sloan Kettering and Dr Dutcher on IL-2. Our first option is Roswell Park in Buffalo with Dr Wong.

I can't thank Maureen, Pat, Ray, Paul, Dr Childs and the RGH team enough. Angels truly were among us yesterday.

Hospital Update

2006-05-01T08:45:00.000-04:00

Joe was moved last night from the 4th floor back to the oncology floor - 6th floor 3400 unit on the Red elevators to room 23. He was sound asleep when they decided it was time to transport him. After our birthday/anniversary celebration there was so much 'stuff' for Tom and I to transport to his new room. Joe got pretty nauseous after the move but a little medicine and my favorite oncology nurse taking care of him goes a long way! The plan is to keep him in the hospital until Wednesday at the earliest, pending his recent infection has cleared. So far, it looks like the infection is clearing but the ascites (Fluid) is accumulating at quite a rapid rate.

The CAT scan results showed minimal growth (1-2MM) in his pelvic region meaning that the interferon was not working to kill the cancer cells. While he did have increased malignancies, the rate of growth has slowed significantly since January. This is encouraging and he is remaining on the Sutent pills daily. The Sutent pills will not cure his cancer but has been proven to significantly reduce the growth rate. He needs high dose Interleukin-2 treatments or the stem cell transplant to cure his cancer. At this time, Joe is not a candidate for either. The fluid ascites buildup that was a result of complications from his surgery is still plaguing him - some 12 weeks later. Typically the lymph system should heal within 6-8 weeks with a patient on either low fat or the TPN no food diet. We all know that Joe is not typical, however, in this instance if he would just fall into the norm a little we would all be quite happy! This ascites is the reason for his poor nutrition, most of his current pain, both bouts of infection, the reason for the last 3 hospital stays and the reason that he is not a candidate for cancer treatments that can cure him. We need to find a doctor who can correct the lymphatic system and eliminate the ascites. The surgical team will be coming by today to see Joe and assess whether he is a candidate for the lymph angiogram and subsequent lymph repair or the Denver Shunt. Dr Kohli is not convinced that either treatment will cure his ascites buildup. His waist measured 113 cm last night and is growing at a rapid rate. Draining 1 liter of fluid a day is now protocol and it just reaccumulates as fast we can drain it. The ascites is the biggest obstacle in Joe's recent health and has become detrimental to his ability to survive. Neither Joe nor I are ready to stop fighting. I, along with all of our friends and family, are working diligently to research and find a fix to this issue and give Joe every chance imaginable for a cure.

We thank all of you who made our anniversary special as well as Tom's 16th birthday.

Love,
Vicki, Gina & Tom

Hospital stay update!

2006-04-28T10:16:00.000-04:00

Joe will remain at Strong Memorial at least through the weekend. He is scheduled for a bone scan to determine whether the Interferon and Sutent have reversed the cancer in his pelvis and right shoulder. We are very hopeful that this treatment has been effective! He is still suffering from abdominal pain from the infection. The doctors have decided to keep the abdominal catheter in place for a couple more weeks before removing it. The goal is by that time the lymph system will be repaired to stop leaking fluids and his infection will be gone. This ascites has been a horrid nightmare from the start! If this course does not fix the issue, I believe that we'll have to take additional action to clear this up once and for all! I know that he'll feel 100% better without the constant abdominal pain, not to mention the high risk of infection that he has just by having the ascites existing in his abdomen as well as the catheter as an inlet to bacteria. He also needs to go back to eating real food!

He's had some complications with low calcium counts which have manifested itself with cramping in his hands. I believe that was caused by not having any nutrition on Wednesday as they were not 'able' to get his TPN from the pharmacy when we went into emergency. He appears to be OK now and he is back on TPN nightly. He is still pretty weak and very tired due to the pain medication for the infection and out of it much of the time. A game of scrabble with Gina and I knocked him out for several hours.

We will make the best of a bad situation and celebrate Tom's birthday, my dad's birthday and our anniversary in the hospital this weekend.

Back in at Strong

2006-04-26T21:59:00.000-04:00

This morning I took Joe back into Strong Memorial emergency as he was experiencing abdominal pain again and was quite distended. He had not been feeling well for the last few days and said that his stomach felt like it was going to 'explode'. After sitting in the emergency room for several hours and having another X-Ray of his abdomen, the doctors determined that he once again has peritonitis, another infection in his abdomen. If it's due to the ascites that is still accumulating or the peritonial catheter that that he has inserted - we don't know. He is back on antibiotics and was admitted after a mere 13 1/2 hours of wait! I think that the worst part was being taken out of a room and placed in the hallway for an hour...or maybe it was when they threw out my sister who came to give me a sandwich...either one qualifies for the worst treatment award! But thanks Toni, I was starving!

He is on the 4th floor, 1200 unit, green elevators, actually a very nice area. The rooms are large and the staff appears to be great. The infectious disease docs are pondering whether to leave the catheter in place or remove it......albiet I don't know what we'll do as the ascites continues to collect without the 'tap'. Either way we'll have to have a plan in place to keep him comfortable.

Today was suppose to be the day that we found out the results from his cat scans on Monday. As predicable for Joe, the cat scan machine broke down after they scanned his head and he was forced to wait over 2 hours for the engineers/mechanics to fix the machine. My dad took him and had to wait in the waiting room all this time! The machine got fixed - Joe got scanned - and the machine broke down again. Dr Kohli was able to tell us only that he got the results of the head CT - and that looked normal. Phew. What we're most concerned about is the pelvic region as that is where the cancer has gone in his bones. Hopefully tomorrow they will have additional news - and it will be GOOD news!!! :-) We certainly need a little sunshine!

I don't know how long Joe will be in the hospital but he's pretty bummed because tomorrow is Tom's 16th birthday (my dad's and Ann M's birthday, too!) and he's going to miss it. But, we'll all gather up there to do a little celebrating that our youngest is now (gulp) able to drive!

So, please send positive thoughts and prayers to Joe - to clear up this ascites as well as good news from the cat scan. It appears that we'll have to go down the third path and surgically repair the ascites leak - thank goodness for Dr Ray Lanzafame who is proficient at laproscopic surgery and is researching and willing to perform it, if Joe is stable enough to withstand it. More news on that as we determine our options.

Thanks for all your cards and letters - Joe is very appreciative of them all. Thanks Maria for dinner - it was WONDERFUL!!!

Love
Vicki, Gina & Tom