Update: Three Times the Charm

Each time after being knocked out by chemo, the recovery really is like the Sun breaking through after a storm for me.  I know it’s cliche, but the least challenging physical ability that we completely take for granted suddenly become the most “ginormous” achievement.  Like the first time I feel awake enough to watch TV (instead of sleeping) in bed.  Eventually realizing that maybe it’s time to pull up the blinds during the day now that I am not in la-la land most of the time anymore.  Then feeling like my body might actually be strong enough to get me out of bed, onto the couch and sit up for an entire day.  Gradually, food starts to taste the way I remember them again.  Now I actually don’t grasp for air after a shower or from getting changed, and actually venture out of the house for a short, slow walk (but only when the Sun is not very strong).  Then as the Neutrophils rise (ie. immune system improves), there is that first meal out (but only when it’s not crowded since it is still important not to catch any bugs).  For me, the finishing line is when my Mom gave the stamp of approval for me to drive and go out on my own again – the sweet smell of Independence!

These past few weeks have been an amazing break.  I got to catch up with friends I haven’t seen for weeks.  There were barbeques in their backyards, lunches, dinners, afternoons walks – I felt like myself again, and often forgot that I am sick, which was much needed both for the body and the mind.  However, reality will once again set in next Monday as I start my 3rd round of chemo.

It was always my oncologist’s hope that we would have identified a match in July.  Then both the donor and recipient would have a few weeks to go through their respective medical preparations for the transplant.  In which case, instead of a 3rd chemo, we would be proceeding with a transplant instead next week.

However, life does not always turn out the way we planned, but it doesn’t necessarily mean it’s not going to turn out at all.  So while I soldier on through my next chemo happy hour, please GET PEOPLE TO REGISTER – NOW

Our Spread the Word campaign has reached so far and wide that there are no words to describe my amazement, and I THANK YOU FOR ALL THAT YOU’VE DONE.

But before I ask you to spread the word and thankfully sign off, this time I am going to first ask you to take a minute and think about all the administration that has to happen from a donor getting registered, to samples taken, samples tested, data uploaded to the Registry, the match identified, the donor contacted and finally the donor going through and passing procedural check ups…….before a match can be confirmed. 

When you realize that from the moment you register to the moment someone gets that long awaited good news that they have a match, that it can actually take as much as a couple of months, and that there are MANY, MANY people like me all over the world who have to subject their bodies, and soul, through yet another round of chemo because a match has not been found – I urge you to please, not only spread the word, but GET PEOPLE TO REGISTER – NOW.

TOGETHER, WE CAN DO IT. Click here for your local Registry’s link.

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A little story I shared with my teammates the day before last year’s marathon

This was my speech at the Leukemia Society’s Team in Training’s team dinner (Sept 29, 2007) the night before the Toronto Scotiabank Marathon where I walked 21K in 3 hours and raised $15,000.

On May 2, 2007, I went for a walk after dinner and at the Starbuck’s at the end of my street, I came across these Team in Training brochures (hold brochure up) on the counter while I was waiting for my coffee. I picked one up, and when I realized that it’s the Leukemia Society, I immediately thought that this was meant to be, that I have to check this out. Then I opened up the brochure, and when I saw the picture of this girl in the middle with a bandana around her head, and her name tag says ‘Carolyn’….Now, I JUST KNOW I am supposed to do this! I have to do this even if it meant crawling half the way………..and by the way, at that point I had NO IDEA just how far 21km is!

One thing I haven’t told you yet, is that I had a bandana around my head too that night at Starbuck’s. That I couldn’t just watch TV and go to bed after dinner because earlier on that day my oncologist had just taken out my Hickman Line. And for those of you who are not familiar with what a Hickman Line is – is was a tube that goes under your skin from here (pull collar down to show scar). One end of the tube went into my main artery, and the other end hung from my chest and that’s where the hospital drew blood and gave me the chemotherapy drugs. I know it sounds gross, but it sure beats getting needles up my arm twice a day.

So, the day I learned about Team in Training and the walk tomorrow, was actually the day my 5 months of chemotherapy was officially over. It was the day my oncologist told me that I am in full remission since finding out at the end of Nov last year, after just an annual check up, that I had Acute Myeloid Leukemia.

Everything happened so fast. I had my blood test on a Monday. By Wednesday, my family doctor called to tell me that they are making an appointment for me at NYGH and that in meantime if I felt nauseous or sick or feel I have a fever that I should go to the nearest emergency room right away. I was told this over phone by my doctor’s assistant while I was driving back to the office after a meeting, and my reaction at the time was “Why!??”

The next morning, I was at NYGH for another blood test and a bone marrow aspiration. Believe it or not, I still didn’t have a clue what this all meant, and I remember saying to my girlfriend, who took the afternoon off to be at NYGH with me, “I can handle anything, just don’t let it be cancer”.

The next day the haematologist at NYGH called to tell me over the phone that I have AML and that my file has been sent down to Princess Margaret and they will be in touch with me shortly.

Truth is, I didn’t really know during the phone call what it even meant to have acute leukemia. I know, it sounds stupid now, but it didn’t even register with me that Princess Margaret is a cancer hospital. That the doctor had just told me that I HAVE CANCER. I mean, this all happened within 3 days!

It wasn’t until I went to the almighty internet after the phone call that I started to freak out. After reading all the horrible things about leukemia, I was afraid to fall asleep that night because I didn’t know how “acute” my leukemia was…..I was afraid I would just die in my sleep that night.

Looking back, I don’t know what was worse that weekend – finding out that I have acute leukemia or having to tell my brother and mom over the phone from halfway around the world that I have leukemia, because they both live in Asia. Within a few days, my family was home, and on Dec 4th, I was admitted to Princess Margaret and spent 5 weeks at the hospital for my first round of chemotherapy.

I’m not going to go into detail about my treatments, because in the grand scheme of things, all the side effects I went through were just temporary and a really small price to pay in exchange for the rest of my life.

When I first signed up 4 months ago, I did it because I thought some cosmic power brought me to Team in Training that night at Starbuck’s. 4 months later today, I can honestly tell you that this has been one of the most amazing experiences in my life. For one, I have NEVER been an athletic person before. I mean my friends used to say ‘yeah right!’ if I told them I didn’t drive somewhere….yeah, I was that bad! In fact, I am willing to bet that half of them probably have a bet going somewhere that I wouldn’t follow through with the training this past Summer because getting up to go for a walk at 8am on a Saturday morning was just inconceivable before I got sick! You may think I’m nuts, but being able to finish the 21km tomorrow is going to be a bigger achievement to me than puking through the 5 months of chemotherapy! Ha

This was the first time I have ever fundraised. From the effort I put into it, to the response I got in return and then watching how powerful it can be when a bunch of people come together towards a common goal – not just from my family and friends, but also from seeing how all of you committed and dedicated your time and energy towards helping the Leukemia Society – I feel really proud to be a part of you. And I’m extremely grateful to my family and friends, because they have collectively contributed a little over $15,000!!! Although NEXT YEAR would be the real test of their love of me!! Ha

As a leukemia survivor, not only do I hope that someday there will be a cure for leukemia, so that others like me will have the certainty that our illness will never relapse and we could live to tell what a piece of cake chemotherapy was! But more personally, I hope that one day, no parent would never have to watch their child go through what I went through like my Mom did, or have to spend even a minute of their life wondering if their child is going to die before them, and for all that my Mom went through, I just want to say Thank You and I Love You, Mom.

Click here to register online today at OneMatch.ca to become a stem cell donor

CTVBC.ca – July 13 2008

Family pushes for ethnic bone marrow donors

Sun Jul. 13 2008

ctvbc.ca

Carolyn Tam has leukemia — and if she doesn’t get a bone marrow transplant, she will die.

But Tam faces a bigger challenge than many — because she is of Chinese descent, she faces bleak chances of finding a match on the Canadian Blood Services bone marrow registry.

“Chinese is under-represented on the bone marrow registry,” said Carolyn’s uncle, Lawrence Law. “We only have a five per cent chance as it is…the need for ethnic donors is very great.”

But on Sunday Tam’s family took a step in the direction of changing that, signing hundreds of people of Chinese descent to take a simple DNA swab test.

The idea is that if more ethnic minorities register for bone marrow transplants, the chances of finding a match will go up — and that will save lives.

MLA Sindi Hawkins knows this issue intimately. When she was diagnosed with leukemia, her sister donated the bone marrow needed to save her.

But fewer than 30 per cent of patients needing transplants will find a match within their own families.

“I don’t think we’re doing a good enough job with Canadian Blood Services getting the word out to ethnic communities,” she said.

Canadian Blood Services says offering the forms in languages other than English and French is a priority, but it’s going to take time.

Time is a luxury those with leukemia can’t afford. Three-year-old Makoda Suen died in hospital two years ago in her parents’ arms.

A match that could have saved her life wasn’t found in time.

“No parent should have to spend a minute of their life wondering if their child is going to die before them,” said Tam.

With a report from CTV British Columbia’s John Fenton
Click here to register online today at OneMatch.ca to become a stem cell donor