One bite at a time

Hey everyone, Lisa here....it has been a while since you have all heard from me. Most of the people that read this blog are on facebook and read the updates that Sylvia has been religiously posting throughout Shari's transplant and her journey pre and post. It is hard to write about something that isn't really 'happening' to you, so I thought it was better to take a break and wait until I had something personal to write about.

As you may or may not know, Shari has had a very difficult time eating since the transplant. It has not been an easy time for her. During her weekly visits to PMH, she had discussions about the fact that she has GVHD (Graft vs. Host Disease). I am not going to try to explain it, but you can google it and you can read about how it is not all bad, and it is common in transplant patients (http://www.marrow.org/PATIENT/survivorship_Ed/#)

One of the symtoms Shari was/is having is the inability to produce saliva. That makes it almost impossible to eat. I didn't know this at the time, but at the James Taylor concert I bought Shari cotton candy, which she loves. You all know that the minute cotton candy hits your month, it melts. Because she had no saliva, the candy stayed the same consistency, and didn't melt in her mouth. It freaked her out.

Shari went down to PMH on June 1st and was finally admitted to treat the GVHD with IV meds and steriods. It really was the best place for her to be. Get the meds she needs, get the rest she needs and the ability to build up her strength and her ability to eat again.

I have been down to visit a few times. Each time I visit I ask what I can bring. When I went to visit before my dad's party, her request was a piece of cake by Roberts cake. It was hard, but I saved her a small piece of cake. On Monday (Jun 7th) Shari asked me to bring a pizza sub from Subway, with extra sauce. I thought, wow, if she wants that, I will bring it. So, when I got there, I re-heated it, and she could take ONE bite. The bite was the size of a pea. The sub was too dry for her mouth. The cake on the other hand, melted in her mouth, so it was so much better for her.

Fast forward to yesterday. I was planning my route downtown and Shari asked me for a special treat, McD's. So, off I went to PMH and searching for a mid/downtown location of McD's to pick up the food. I didn't have much sucess, so the french fries were cold and not enjoyable....BUT Shari was able to eat a 1/4 of a hamburger - SUCCESS!

She told me that she was going to be able to go home for the afternoon and evening. So, since I was there, I waited for her to finish her meds and 'sprung' her out for the day. On the way north Shari told me that should would love something from Baskin and Robins, so off we went to have ice cream, which I can say, she finished almost ALL of a kiddie size scoop in a cup. FANTASTIC.

Later that night, I met up with her, Mike and Sylvia at the Fish House for dinner. Let's forget the service, which was less than stellar, it was about Shari, and the fact that she had some clam chowder, some bread, a couple of bites of caeser salad, some baked potato and LOBSTER!!

The dinner was more than just eating. It was this rare opprotunity to talk openly and candid with Mike and Sylvia. It was a chance to get to know more about the family that I have spent the last year with them and all their ups and downs of this journey that was handed to their family. Time to talk about how to hopefully begin the mental and emotional healing now that the physical healing and the cancer is now gone.

I am glad that I have seen the little milestones that Shari has gone through since being at PMH this time. I know that she will continue to fight, eat, grow stronger every day. I don't know how one does that, but the key is one day at a time. One bite, one spoonful, one day at at time.

You will get there Shari, I know it.

I will see you soon!

"Make a Wish"

I haven't started work yet today, and just finished watching a video piece on the Today Show. It was a celebration of the 30th anniversary of the Make a Wish Foundation. The little boy in the piece had a rare form of Leukemia. His wish was to meet a WWE wrestler that he idolized. As I watched, I am reminded that it doesn't matter if you are six like that little boy, or 34 years old like Shari. I am happy that I was part of something that made a wish for Shari come true last Friday night.

Shari and I love James Taylor. I started to listen to "JT" way back when I went to camp Northland. To me, music is very powerful. You remember where you were when you heard a song, how it made you feel, and the people you were with and the experiences you had.

That has continued to this day, for Shari and I. When JT comes to town, we have to go. It is as simple as that. Until this year. When we first found out that he was coming to town, Shari had just found out her match was found. She told me that she didn't think that we would be able to go this year. So, we never bought the tickets and I put it out of my mind.

Last week, Tuesday May 25th, Shari found out that she was cancer free. CANCER FREE! Her transplant was 75 days ago (at that time). That news really helped her turn a corner in her healing. She took her car out of her garage for the first time in almost a year, and drove it!

Which brings us to Friday May 28th. I was out with my mom and my nieces and received a call from a friend. The call was, "Have you spoken to Shari? You have to phone her right now. You are going to James Taylor tonight"....HUH????? So, I phoned another friend, who turned out to be our make a wish angel - saying that she had four tickets for us to the concert.

When I spoke to Shari, she sounded very tired, and I wasn't sure how this was all going to work. But I knew that it was a gift. Shari was cancer free, and we were going to JT - together. And I was going to see her for the first time since February 28th, before her transplant.

So Shari, Ashley and I embarked on our journey. We arrived at the concert late to avoid the crowds. We ALMOST didn't get a parking spot, but there were angels ALL around. One car drove out of the lot as we were driving in. So, we took the last spot in the lot.

We arrived at our seats (5th row) and just looked at each other and said, "can you believe we are here". I don't know if I have the words to explain how it felt. To be sitting watching JT (and Carole King) with Shari. Shari had several emotional moments, as did I. The song "Fire and Rain" was very emotional for me, and of course, "You've got a friend". After we stood for the ovation, we just hugged.

That was the last song before the encore. We had to leave before the crowds, so I gave Shari the choice to stay or go. She just looked at me and said, "they are going to sing Up on the Roof, I just have a feeling"...which is her song. So we stayed, and they came out and started to sing Up on the roof. Right after that we dashed out before the crowds and went to the car.

As I read back what I have just written, I realize that it doesn't even touch the surface to what I am (was) really feeling about that night. To see Shari, for the first time in three months, to know that she is cancer free, to know that she is going to live....what can I say?

Here's to all the moments we have already shared, and all the moments we have yet to share.

The Climb Lyrics - Miley Cyrus

"I can almost see it,
That dream I am dreaming, but there's a voice inside my head saying
"You'll never reach it"
Every step I'm taking, every move I make feels lost with no direction.
My faith is shaking, but I gotta keep trying, gotta keep my head held high.
There's always gonna be another mountain.
I'm always gonna wanna make it move.
Always gonna be a uphill battle.
Sometimes I'm gonna have to lose.
Ain't about how fast I get there. Ain't about what's waiting on the other side.
It's the climb
The struggles I'm facing.
The chances I'm taking, sometimes might knock me down.
But no, I'm not breaking, I may not know it.
But these are the moments that, I'm gonna remember most, yeah.
Just gotta keep going, and I, I got to be strong.
Just keep pushing on
Keep on moving, keep climbing
Keep the faith, baby it's all about, it's all about the climb.
Keep the faith, keep your faith, whoa"

Shari's Mission and the numbers

As you all know by now, Shari needs a bone marrow transplant. In the last month, there have been four drives to help Shari and others like her find their match. In less than one month, Shari's Mission has helped add close to 1400 people to the bone marrow registry in Canada. That may seem like an amazing number, and of course it is, especially to the over 800 people currently waiting for their bone marrow match to save their life.

This adventure is all about the numbers. For Shari, numbers relate to her levels when they are down, and she is neutropenic (An abnormal decrease in the number of neutrophils in the blood). That means it is very dangerous for her to catch any germs, infections, etc for her body is not able to fight off any infections, which is bad for anyone in her situation. But, when her numbers are UP, it means she has engery, can go for walks, can see her friends and family, can go out for sushi (yay for sushi), and means that she is getting stronger every day. Numbers....when Shari was in PMH (Princess Margaret Hospital) the numbers are put up every day after chemo, and we all waited...to see them start to climb which showed us that she was coming out of the bad times.

But now, the numbers means something different. These are the numbers that have been thrown around to me the last six weeks:
- about 27 million eligable Canadians in Canada, and only 250,000 are on the bone marrow registry.
- over 800 people are currently waiting for bone marrow matches
- there are many different types of cancers that need and require bone marrow for a patient's survival.

The question is: how can we raise awareness to the need for people in our community, the city, the province, and beyond to step up and get tested to see if they can save a life.

One Match, is the arm in Canada for this. Once you are in their website (http://www.onematch.ca ) you can read about the who, what, where when why and how about blood services, stem cells and bone marrow. Why should I donate, How can I donate. It is very simple, you do it on line, and they mail you a kit, swab, and send it back....simple...BUT there are other ways as well.

I should also stress the importance of giving blood and platlets. I have a friend who is a regular platlet donor, and I can tell you that he is helping saves lives as well. Shari has had to have lots of blood and platlets to survive. So, every small part, is HUGE to someone else. More than I ever imagined.

As I said at the start of this post, Shari's Mission (http://www.sharismission.com ) has been holding bone marrow drives and will continue to do so, until we find a match for Shari, and beyond, to help all the others.

Our next MAJOR event will be on Monday November 23rd from 4-9pm at Hava Nagila Banquest hall (1118 Centre Street in Thornhill). Shari's brother Rob, is challenging the community at LARGE to support this event. Everyone needs to 'pay it forward' and come out to register. Plain and simple - PEOPLE NEED YOU!

I know that many people are already on the list from past drives for others in need. I understand that. But many of you are not. What YOU need to do is just pass this on, and let everyone you know, know about this. Let them decide if they want to help save a life.

I hope that you can do this. I hope that you agree that you can do your small part to help someone else.

I know that I am probably starting to sound like Jerry Lewis with my pleas for help for Shari and others like her, but it is all true. It is probably easier to help with a bone marrow drive, than it is to help find a cure for Muscular Dystrophy. I am not comparing...I am just sayin'.....

Please feel free to contact me at any time if you have any questions, concerns, want to volunteer, want to know more about....whatever....if I know the answers, I will tell you. If I don't, I will try to find out.

Sushi - the connection between friends

When I started eating sushi many years ago, my repetoire consisted of california rolls, cucumber rolls, tempura and teriaki. Over the last few years, several all you can eat sushi places have popped up in my area (one in the back of my condo) and I have been able to try new things. I love sushi now, and have been known to go a couple times a week if asked...lunch, dinner...you ask, if I can go, we go.

So, when Shari called yesterday and told me she had a craving for sushi, I jumped at the chance. It was more about seeing her than eating the sushi, especially since yesterday was her last day of chemo. I had my niece's birthday party at night, so we agreed to meet for an early dinner at the place near my condo.

I was so happy to see her. I knew that she had a 'fanny' pack with her chemo that she took home, but I was surprised to see her take it out of her purse! I didn't realize it was with her, attached to her, at all times! Especially when she got up to pay, but didn't remember that she was attached to her purse - not something you should forget!

We ordered lots of food, and started to talk, and laugh and share. The last few months, we haven't had a lot of times that were filled with our usually crazy stories, funny stories and laughter. (yes, there was lots of 'girl' talk). It is quite funny actually, I have been to this restaurant with other friends, and we get VERY engrossed in our conversations, that we don't even realize people coming and going. We are in our own space, and place in time. It is hard to explain, but it is very special. I have shared many sushi meals with friends, and when you look at your watch...you don't even realize that you have been there for almost three hours sometimes! A quick dinner, is no less than a 90 minute affair, that's what it was last night.

Of course we talked about cancer, and the bone marrow and what comes next. I hope that Shari will be well enough to come to the donor drives and see how many people care about her and hope that she can 'kick cancer in the ass' and beat this thing. I will be there with my camera on hand at all times, so even if she isn't there, she will know what went on. When, not if, you come to one of the three drives, please make sure you see me so that I can take your picture.

Shari, I look forward to the next time we can share salmon sashimi, sushi pizza, shrimp tempura and more. Stay strong and healthy and I hope that with the events in the next few weeks, that you will be able to get what you need and be able to share years and years of sushi meals with me!

For everyone reading this, if you are not already on the bone marrow registry list, PLEASE do one of the following:
- join on line at http://www.onematch.ca or http://www.giftoflife.org
- come to one of the three events happening in the next few weeks at the following locations:

• October 20th - 3:30 - 8:00pm - 4700 Bathurst Street (Council House for Jewish Women)
• October 31st - 10:00 - 6:0pp - Hillcrest Mall (The bay Kids entrance)
• November 1st - 10:00 - 6:00pm - 4700 Bathurst street

To read more about Shari and her story, please check out http://www.sharismission.com

what a week...and it is not over yet

Where do I begin? This week has been a rough week all around. Not necessarily for me personally, but for people around me. There have been, I think at last count, six deaths and funerals this week for people that I know or through friends know. Not to mention, the death of a hamster and a dog. AND it is only Thursday.

The age ranges are huge - spanning from a 99 year old man to a 38 year old man. Opposite sides of the spectrum. I can somehow rationalize the passing of a 99 year old man, as someone who has lived a full life, but a 38 year old man? That is a life not yet lived.

During the eulogy, it was mentioned that we are not only grieving for the life lost, but for the life not lived. All the dreams not yet realized and all the experiences not yet experienced. It was so sad. This being said, this young man was a Princeton and Harvard Graduate who was working at the UN. He travelled to Congo and all over the world. He lived life, but for 38 years, it was not a long enough life.

I also realized that friendship doesn't know about time. I sat in a row with people I knew over 25 years ago. Some I have crossed paths with over the years, others not. Some crossed paths with the friend who passed, and some came because there was at time in our lives that we were everything to each other. We all went, and were all affected by his life and his passing. At least I can speak for myself about that.

Just to elaborate on that time in our lives, it was BBYO (B'nai Brith Youth Organization) that linked all of us together. It fostered friendships that obviously last a life time, as well as a strong sense of community and your part in it. It is as true today as it was 25 years ago when I was in the program. I still have friends today from that time, and I think will be in my life in some aspect always.

As I have said over and over this year, I have been faced with my own mortality and now a friend's mortality. It is very hard to imagine 'what if' or 'what happens next' and who knows when that time comes, what it will be like. I just know that I want to hang on to what I have right now and not let go.

Is it just me?

I am trying to figure out if it is just my heightened awareness to Cancer and organ donation or has the television media just ran out of story lines and now they all seem to use it as a plot line. Why are TV shows choosing the "illness card" more and more?

1. Grey's Anatomy - Izzie Stevens, well we all know her story. She was flatlined and ready for death at the season finale, but she signed her contract, is now a patient living with Cancer and no longer 'surgical'. I suppose that is what happens after you finish treatment and you start to live a normal life again....is it?

2. Young and the Restless - this summer, they decided to give a beautiful young woman, with everything to live for Ovarian Cancer. And they did a REALLY bad job with it. They made her have surgery, and they had to give her a full hysterectomy, BUT they saved her eggs for harvesting with her husband in the future.

When she started her chemo, she decided to shave her head BEFORE the chemo even started. From what I witnessed first hand this summer, it wasn't until about a week after the chemo was completed that hair starts to fall out. And I KNOW it is television, but this 'patient' looked good for a patient undergoing chemo.

3. Young and the Restless - used it again this past week. One patient was brain dead and another needed a heart. When they decided to end her life, they noted that she was an organ donor and they proceeded to give her heart to the sick patient.

4. Dr. Phil - a few weeks ago had on 8 donors and recipients that have given their kidney's to others. It was also a subject on last years Grey's Anatomy, but these surgeries actually happened.

5. Commercials - I just saw a commercial today about a child that received a bone marrow transplant for a rare condition that they had and now they are alive and well and thriving again.

6. Mercy - a new show, pretty good actually. The first episode was with an 'older' lady who had cancer and she was tired of all the treatments her kids were making her go through. She did not want any more procedures. Her nurse told her that she had a choice, and she could choose no more treatments.

7. Brothers and Sisters - now Kitty has been plagued with the cancer card. She has lymphomia, and on Sundays episode she had to undergo a bone marrow biopsy to confirm her condition. All of this is very real to me and what I have witnessed this summer.

I watch a lot of TV and a lot of them are dramas, so it comes with the territory, but the reality of life is enough for me, now it is in so much of what I watch. Sometimes too much. But, I will probably continue to watch, well...because I like my shows.

Did I miss any shows that you watch? leave me a message, I would like to know how many other shows out there are using the cancer or illness card in their story lines.

The reality of Shari Silverman is that she needs a bone marrow transplant. If you haven't already done so, you need to register on line at www.onematch.ca or you need to come to one of the clinics that are being held at the end of this month. Please read this article from this week's CJN paper - http://www.cjnews.com/index.php?option=com_content&task=view&id=17753&Itemid=86