Update: It’s time for Plan B

Before I give you my update, I want to send our love to the family and friends of Emru Townsend and Hector Arenas.  These guys were amazing individuals and fought an incredible fight and they will forever be in my heart.

I want to congratulate Graham Barnell and his family on returning home to Melbourne after months in Seattle for a double cord blood transplant.  Graham and his wife, Samantha, are paying for the treatment ($500,000+ USD) out of their own pockets and I appeal to all of you to pleeeeease help support this family’s brave journey to save Graham’s life by donating towards their medical fund.

I want to cheer on Michelle Maykin and her husband Van, who are away from home for a double-cord transplant in Seattle’s Fred Hutchison. Michelle’s incredible strength and positive attitude have been always been a source of inspiration and reminder for me to stay strong each time I feel like I couldn’t handle this anymore.  I wish for nothing but all of Michelle’s “I want’s” to come true as soon as possible!

Also a cheer to Dr.Guha and his family who are also away from home for an unrelated match transplant in California’s City of Hope.

As for me….

Me, my Mom and my childhood friend, Susana, from Vancouver just spent all last week in Baltimore, Maryland to meet with the transplant team at Johns Hopkins Hospital.

One appointment with one doctor, ended up being multiple appointments throughout the week with 2 different doctors, various coordinators, blood tests for me and Mom and having to find an apartment for when we go back Dec 1 to stay.

Aside from information overload, having to find an apartment within a few days, and notwithstanding the circumstance…..I am really glad I got to take this road trip with Susana and Mom – we also took a side trip to Washington DC.

Me and my whole family will be going back to Baltimore on Dec 1. My brother Patrick will be traveling back and forth between HK and Baltimore during the whole month of Dec, and my Mom and I will be staying there for 3 months.

The goal now is to have a Non-myeloablative Haplo-transplant before the Holidays – this is a transplant of Patrick’s stem cells since we did not find an unrelated donor match and Patrick is a confirmed 50% match.

Johns Hopkins has been doing this since 2003, and the chances of developing severe Graft-vs-Host-Disease is around 6% and the survival rate is 85%, although with my age I was told the odds are even better.

The flip side of this protocol is that the relapse rate is higher than traditional Myeloablative haplo-transplant.  However, they say as long as I don’t completely clash with Pat’s cells, we can do a Donor Lymphocyte Infusion (DLI) which is sort of a mini transplant if I relapsed and they have proven results that this subsequent infusion will get the job done

Although we didn’t end up finding a match for me, I still feel really lucky and blessed to have received the amount of support I did, and to have made a lot of new friends along the way.  I hope what we accomplished this past Summer is only the beginning, that you will join me and many others in continuing to spread the word about the dire need for new marrow donors within all ethnic communities, and I hope all our efforts will become that much needed silver lining for other leukemia patients in the future.

TOGETHER, WE CAN DO IT.

Click here for your local Registry’s link.

I will have internet access at the apartment in Baltimore, so do feel free to drop me a line via email, Facebook or this website, and I will post updates whenever possible.

Thank you all, and don’t worry, because I’m confident I will be home before you know it!

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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.

What’s next?

Wow, it’s been a month since my last update.  It’s hard to explain, but some days time seems to go by reeeally slowly (especially when you are sick in bed but can’t fall asleep), and then other days you check the calendar and think to yourself: Oh my God, it’s been 4 1/2 months since my relapse!?

Well, not too long after my nightmarish 4-day stay at Toronto General’s Emergency due to a fever caused by an infection in the blood, I then caught an infection in my lungs and this time the fever lasted for 2 weeks!  I’m not going to bore you with the details during those two weeks, because each episode is temporary and the important thing is that it’s over.

My Uncle Lawrence from Vancouver came to stay with me and Mom for 2 weeks, and since he’s been here on the 2nd, I have been recovering rapidly – my blood counts are back up, we’ve been going out lunches, for walks, and most importantly, I gained back 5 of the 15lbs I lost since April!

Thanks to Susana and Angela in Vancouver, I got a ‘special’ copy of Sex and the City to watch at home since I can’t go to the movies because it’s too crowded.  I also got a copy of Yongey Rinpoche Mingyur’s Joy of Living, which I am surprisingly hooked on because Yongey is a Buddhist monk who also has a lot of knowledge in Western science.  In this book, he compares and explains the brain’s function both scientifically and spiritually, which I find fascinatiing.

In another few weeks, my brother, Patrick, is coming from HK to stay with us for a couple of months and I can’t wait for that! Despite what an unlucky situation this is, I consider myself a very lucky girl to have the kind of family and friends I have.  Not to mention the unbelievable amount of support and well wishes I have been receiving via emails, posts, and phone calls from people I have never met.  Then there are people like Jenny in Philadelphia who contacted us and organized a drive on Aug 16th, and Angela in Montreal who contacted us with all kinds of ideas to help promote our cause through her Chinese radio station contacts.

I don’t know what the next step is right now.  We have not found a match yet at this point.  My doctor is on holiday this week, and my gut tells me that when I see him next week, he might tell me that I need to do a 3rd round of chemo in order to keep me in remission (fingers-crossed that I am wrong).

Thank you again to all of you who have taken an interest in my plight and in turn helped with increasing the number of registered Asian stem cells donors dramatically these past 4 months.  PLEASE CONTINUE TO SPREAD THE WORD, FOLLOW UP WITH 5 PEOPLE, LET’S NOT LOSE THE INCREDIBLE MOMENTUM WE HAD.

Thank you on behalf of myself and ALL the patients I have come across at the hospital hoping to hear from their doctor: “We found a match!”

 

~ CLICK HERE TODAY TO BECOME A DONOR ~

 

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

This 2nd round sure hit hard!

Well, it has been a crazy few weeks for me.  It started out nice because my Uncle from BC was here during my week of chemo and provided the much needed company and relief that I think my Mom needs.  My brother also flew in for my birthday, but unfortunately I was so weak and sick from the chemo that we couldnt really do much except hang out in my room watching TV.  Both my eyes started hurting after my birthday and pretty much had to stay shut until a couple of days ago.  Last Tuesday enroute to PMH, I fainted in the elevator in my bldg and had to be taken to Sunnybrook in an ambulance.  Then on Saturday I developed a fever, and this time we drove ourselves to the emergency at Toronto General Hospital (they share the same patient database as PMH) and Mom and I ended up staying there for 4 days – THAT was Horrible!
 
Still pretty tired.  Been in bed all morning, just now feeling decent enough to check email and eyes well enough to stay open without sunglasses.  Hope things will get easier from here!

My Birthday

My birthday was not very eventful, as side effects were kicking in, and I was pretty tired.  It was simple and sweet though – my family were there and that was all that mattered.




Second round chemo begins

So, my doctor told us yesterday that we should strike again while I am in remission ie. I will be starting my 2nd round of chemo next Monday….Ick! The good news is, it will be outpatient this time, so while it will be a pain treking to the hospital while I’m sick and weak, at least I will be in my own bed! I know there are still a lot of activities on the horizon eg. my brother is working on 2 drives in HK in July and I think Vancouver is trying to put together another drive towards the end of the month. And even if I didnt benefit from this in the end, I am still grateful that this REALLY opened my eyes to the power of many and that there are definitely still LOTS of goodness in this world. Thank you again for all your support and well wishes for me and my family!