Day+282 (9 months, 7 days)

First things first.  Happy Chinese New Year!!!  This year is the year of the horse.  I wish those who celebrate a happy, healthy and prosperous new year!  恭喜發財! 龍馬精神! 身體健康! 心想事成!  My only wish for the year of the horse is continued recovery.

Alas, after my Hickman Line infection during the first half of January…and my great news last week…I now have shingles.  It doesn’t stop, does it? It’s just another bump in my journey I guess.  After all, it hasn’t even been a year after my transplant, so I guess it’s way too early to be considered “out of the woods”.

This past Sunday afternoon, I noticed a mild burning sensation and pulsing pain on my left-side torso.  I got Daniel to check the area out and he saw small pink blisters.  I knew immediately it was shingles – I had all the classic symptoms.  So, I immediately left a message for my PMH nurse that day.  She called me back first thing the next morning, and told me to go to PMH ASAP.

When I got there, I registered at the front desk and was immediately shooed into the back elevator hallway to sit in a chair there, away from all the other immunosuppressed patients at the BMT clinic that morning.  They did not want me to infect them, which totally made sense to me.  Then, the nurse called me into an examination room within minutes (a first for PMH), and she looked at my torso.  “Yup, it’s shingles,” she said.

Then, Dr. Lipton came in and looked at my torso and he said, “Yup, it’s shingles.  Good thing you caught it so fast, otherwise, there might have been serious complications.”  The reason why I caught it so fast was because both Daniel and I have had shingles before so we kinda knew what the symptoms were.  After I was given a prescription for famcyclovir, an antiviral drug, I was told to “disappear quickly” so as not to infect anyone at the hospital.  So we did…

I’ve been on the meds for 5 days now and while the burning and pulsing pain have subsided somewhat, the rash just seems to be getting bigger.  I have to go to PMH again next week for a follow-up and perhaps another round of famcyclovir.  Unlike healthy bodies, immunosuppressed bodies like mine take a long time to respond to medication.

So, that’s my story for this week and I’m so sorry it had to happen during what should have been the most joyous and festive season of the Chinese calendar.  While I am uncomfortable as a result of the shingles, I am not fazed by it.  Till next time!

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Day+276 (9 months, 1 day)

This past Wednesday, Dr. Lipton called me at home.  When I realized it was him, my heart started to beat faster and faster…I was afraid of the news that he might bring.  He sounded so serious at first, it totally freaked me out.  He said, “Winnie…the test results came back…it’s UNDETECTABLE!!!”  I became silent, not knowing what to say.  Then I thanked him many, many times, and we hung up.

So, what do the test results mean?  It means that based on the most sensitive test available today, they were unable to detect any CML cells in my body.  Does it mean that there are absolutely no CML cells in my body?  No, there may still be a few floating around in there, but there are so few that even the most sensitive test available today cannot detect them.  So…this means that I am officially in remission!!!

What does this mean for me going forward?  I will continue on my medication (Gleevec) indefinitely, hoping that it will keep me in remission forever.  Dr. Lipton will continue to monitor me with regular blood tests and other tests to make sure (a) the cancer doesn’t come back, (b) GVHD doesn’t show up, and (c) Gleevec doesn’t cause serious side effects.  My body needs to continue to recover and get stronger.  I still need to be careful about germs.

As promised many posts ago, here is a recent pic of me and Daniel at a friend’s place on New Year’s Eve.

New Year's Eve Dinner

New Year’s Eve Dinner

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Day+258 (8 months, 14 days)

To those people who think Toronto’s winter is too balmy to have multiple Canada Goose parkas: TRY STANDING OUTSIDE TODAY FOR 5 SECONDS AND WATCH YOUR FINGERS FALL OFF! Okay, that was dramatic, but you get the picture. (And FYI – I don’t own any Canada Goose, but today, I wish I did. I hear they’re WARM.)

Anyways, I’m off to a “not-so-good” start to 2014, medically-speaking. As I wrote in my last post (January 4), I have an infection at the exit site of my Hickman Line. Well, I was complacent and actually waited a few days before calling PMH yesterday to let them know of my situation. As soon as the PMH nurse found out, she basically told me to get my behind to the nearest Emergency ASAP! Apparently, an infected Hickman line could be very dangerous. Long story short, I am now hooked up to a fanny pack with a machine in it to administer IV antibiotics into my bloodstream periodically throughout the day. I am hooked up to this thing 24 hrs. a day and a homecare nurse will come to my home every day for the next 7 days to refill my antibiotics.

I’m grateful that I am not in pain or feeling unwell from this infection. It’s just more of an annoyance than anything, being hooked up to a machine 24/7. And I had to visit the Emergency at Markham Stouffville Hospital 3 times this week for follow-up. I don’t like going to Emergency. It’s a cesspool of germs even for the healthy. I have to be very careful.

Lesson learned: Winnie, you’re not out of the woods yet. Don’t be complacent! Continue to be careful!!!

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Day+255 (8 months, 11days)

Happy New Year! I wish everyone a happy and healthy 2014!

As promised, I was busy eating throughout the holidays, with a little shopping thrown into the mix. Just very happy to be able to do normal stuff.

Last hospital visit was Dec 31. Blood results looked good; doctor was happy. The doctor scheduled the long-awaited PCR test for Jan 15. This test will tell us how well the current medication is working or not. I’d be totally lying if I told you I am not anxious right now. But I’ve been on this journey long enough now that I’ve learnt to deal with the stress of waiting.

Recent victories: I can eat like a horse. My previous passions are coming back – makeup, clothes, handbags, shoes, shopping in general LOL! My doggies love me again ^_^! I dream of going on vacation and going back to work. I can go to gatherings if I am careful. My red blood cell counts are holding pretty well so I am needing blood transfusions less and less frequently.

Recent setbacks: My right eyebrow is falling out again (yup, just the right side). My hairline is receding like man’s (so weird). I have an infection at the exit site of my Hickman line (with oozing blood and pus, so gross). My nails have still not recovered from the chemo/radiation/transplant – they are still soft and easily torn, the surface is full of ridges and bumps and they are still discoloured. I can’t read near, like I have presbyopia, but the doc says it might be swelling in the eyeballs due to my meds or it might be transplant-related or I’m just getting old. I’ll be seeing an opthamologist at the hospital for that soon.

Small victories = very happy
Minor setbacks = I can deal with it

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Day+243 (7 months, 29 days)

I just wanted to wish everyone a Merry Christmas or Happy Holidays and a Happy New Year!

As for me, I will be spending this Christmas in town with friends and family. I will be eating a lot this holiday season, trying to make up for all those months that I couldn’t eat! LOL!

Best of luck to those affected by the ice storm! We are counting our blessings as we have not been affected.

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I’ve been having very normal days lately and I am very grateful. I just went to my doctor’s appointment today at PMH and my bloodwork is looking good. My hemoglobin is not dropping as quickly as it used to, and my reticulocyte counts are increasing, both positive signs of bone marrow recovery. I still have CML cells floating around in there, but that’s a concern for another day. I’m still taking Gleevec for that.

That’s really all I have to say today. Kinda boring but no news is good news. I’m just wondering when I can take my hickman line out and go swimming and scuba diving again…

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Day+214 (7 months)

It’s been longer than usual since my last post more than 3 weeks ago. It’s just that there hasn’t been any change in my situation. I guess no news is good news at the moment. My next PCR test, to test the presence of CML cells in my body, is supposed to be sometime in January. In the meantime, I’m getting weekly or bi-weekly blood tests to monitor blood counts. If the doctor doesn’t see anything weird going on in these weekly/bi-weekly blood tests, then no need to worry for the moment.

Currently, other than feeling really tired all the time due to a very low red blood count, I’m actually feeling rather “normal”. I still get bi-weekly blood transfusions for the low RBCs. I’m taking Gleevec, and get nausea every other day or so as a side effect from it. I’m taking a lower than normal dose right now so I’m not puffing up or bleeding in the eyes like before.

My taste buds are slowly waking up and my saliva production is also slowly recovering. My skin is no longer itchy and is not as dry as before. My eyebrows are growing back, and so is my hair – it is like a crew cut now.

We’ve finally moved into our new place. The doggies will be joining us this weekend. I am soooo happy that we will all be together again under one woof!

Unless something unexpected happens, I’m not thinking about cancer until January. I’m going to enjoy the holidays and eat good food, now that I can taste some of it!!!

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