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