Day+637 (1 yr, 8 mos, 28 days)

I looked at my last post and realized that I hadn’t posted since August of 2014!  My bad, my REALLY bad.  I know I had some people worried.  My apologies.  Rest assured that I am doing well.  I am dealing with some “other” stuff right now, and that’s why I’ve neglected to post here, but physically, I am doing well.

My last PCR test was done in December and I am still undetectable for CML cells.  Yay!  That means I am still in remission.  However, I am still on Gleevec, a targeted cancer drug, to make sure I remain in remission.  Just hope it continues to work and doesn’t cause any detrimental side effects!

I am still having issues with my blood count – they are still abnormally low, but the doc assures me that this is to be expected and may continue for some time, perhaps forever.  Therefore, extreme and sudden fatigue is still an issue.  I am still having issues with some kind of autoimmune reaction in my body that’s attacking my facial skin.  And we still don’t know if it is some kind of allergy or gvhd or whatever it may be.

As for hospital appointments and blood tests – I have regularly scheduled appointments with my hematologist/oncologist once every three months, but in reality, I see him probably every month, due to one unforeseen medical problem or another.

All in all, I am grateful for where I am right now.  Someone asked me a while back if I was recovered 100%.  Well, not to be rude, but I kinda laughed, cause I don’t think it’s possible to be 100% after a stem cell transplant.  Much damage has been done, which is irreversible.  But that’s ok.  Transplant survivors learn to live with their new selves, whether it be 20%, 50% or 80% of their former selves.  I know I am one of the luckier ones and I am grateful for that.

I am thinking that I might stop posting on this blog when I reach my 2nd re-birthday, which is April 24, 2015.  I thought it would be a good time to close this chapter of my life.  The docs told me that if I should still be alive 2 years after my transplant, my chances of survival would increase to 80-90%.  Whoohoo!  That’s infinitely better than the 40% survival rate they quoted me before my transplant!

Day+489 (1 yr, 4 mos, 2 days)

My last appointment at PMH was almost 2 weeks ago now, but I wanted to wait until I got all my test results back before I posted.  Good news again!  I remain undetectable for CML cells!  Always a BIG sigh of relief when I get that result.  My next PCR test will be in 3 months’ time (i.e., mid-November).

My routine bloodwork wasn’t anything to write home about.  My red blood cells have been the highest they’ve ever been since before the transplant, but still nowhere near the normal range.  I’m disappointed that recovery here is so slow, but at least it’s moving in the right direction.  No doubt, the low red blood counts are contributing to my “crashing fatigue” – yeah, it’s a new term I picked up – it just means that I’m all fine one moment and the next, I crash and must lie down immediately and rest.  The doc and I are working on building up my energy and stamina.

My white blood counts are low too.  I was hoping they’d be closer to normal, so I don’t have to be a germaphobe anymore, but I guess I still have to.

I’ve been reading a lot and doing a lot of research lately, trying to find solutions to some health issues I’ve been experiencing.  One thing that has really been bothering me (among others) is that I have severely dry facial skin.  The skin on the rest of my body is generally dry too, but an application of  moisturizer after a shower will generally be sufficient.  But my facial skin is another story.  It is one hot mess – red and inflamed, crusty, flakey, itchy, cracking, waking up with pain and streaks of blood on my face due to the skin cracking overnight.  It gets better for a few days, and then the cycle repeats over and over again.  It’s horrible, disgusting and oh so painful and uncomfortable.

That’s where my research comes in – what is causing this?  What can I do to make it better?  I suspect it’s a combination of Hashimoto’s Thyroiditis and food sensitivities, but it can also be caused by the chemo/radiation or Gleevec, or simply just ageing (haha).  I’ve switched over to only natural skincare products with no chemicals and nasties.  That helped a bit.  I’ve installed a water conditioner in my home to “soften” the water and remove chlorine, minerals, etc.  That helped a bit.  I’ve tried to make sure I take my thyroid meds as directed and keep an eye on the thyroid levels.  That helped a bit.  I drank more water and am taking fish oil.  That helped a bit.  I’m staying away from dairy products.  That helped my facial skin a bit but it did wonders for my digestion!  What d’you know? I’m probably lactose intolerant and perhaps also allergic to the casein and/or whey in milk!  My doc advised I should probably do an elimination and challenge diet to make sure.  My search for the cause continues.   I hope I figure it out by my next post!

 

Day+435 (1 yr, 2 mos, 9 days)

Hello everyone!

I’m sure you have all noticed that the time between posts has been getting longer and longer. This is because things have been pretty stable over the past several months. I am still dealing with a whole host of medical issues, but nothing as “urgent” as last year.

Over the past several months, I’ve been feeling generally unwell – extreme fatigue (cannot even finish a shower in one go), shortness of breath, nausea, vomitting, headaches, dizziness, diarrhea, etc. Lots of issues that just won’t go away. My appetite is 50% of what it was in the first quarter of this year. My energy level is also only 50%, maybe even less.

Of course, I consulted with my doc at PMH, and had the usual blood tests to make sure everything was still ok. Results of the blood tests indicate that nothing was out of the ordinary, so basically, we don’t know what exactly is causing my issues. But then again, all of these symptoms could be side-effects of my medications, or a result of my low blood counts, or after-effects of my chemo/radiation/transplant combo. There’s just no way to pin it down. I continue to educate myself by reading medical journal articles and chatting with other transplant patients to exchange thoughts and ideas, to see if we can all improve the quality of our post-transplant lives.

I’m scheduled to see Dr. Lipton again in August. That’s when my next PCR test will be. I wonder if I’ll ever get used to this new life of mine!

PS. I dreamt of scuba diving the other day, but I don’t think I’m ready yet…

Day+397 (1 year, 1 month, 2 days)

My apologies for not posting earlier…I got my PCR test results a few weeks back and I remain UNDETECTABLE for CML. I am currently being weaned off my meds for post-herpetic neuralgia (shingles pain) and so far, so good. My bloods remain stable and low, all as expected. I’m also currently trying to manage my medication side effects, which are mainly fluid retention and extremely dry skin at the moment. Of course, chronic fatigue is always an issue.

My doc felt some lumps and bumps on my body during my last exam, which resulted in me getting one diagnostic test after another, culminating in a breast biopsy. Man, did that hurt! My whole arm continued to hurt for a whole week afterwards. My doc is extremely careful with me, ordering diagnostic tests all the time, as my chances of getting other cancers are higher than the normal population, after what I’ve gone through. So better safe than sorry is the motto. Oh, the results came back negative but I was instructed to keep an eye on it.

I just found out the sad news of the passing of a fellow patient today. She had CML like me. She had her transplant one month after I had mine. She fought hard against GVHD and many, many infections, one after another. We encouraged each other to stay strong during the toughest of times. RIP, H.W., RIP. You will be dearly missed.

Day+365 (1 year)

Today is the first anniversary of my transplant – my so-called first birthday. I am very happy and grateful. Thank you EVERYONE for supporting me this past year. There are so many of you…you know who you are…THANK YOU!

I still go to the hospital regularly – to see Dr. Lipton, to get my blood drawn for tests, to get my pentamadine treatment, to have my teeth checked, to get my eyes checked, to pick up meds, etc.

I will be getting my PCR test done next week – I don’t look or act stressed but I can tell you that I AM STRESSED! I think that I will have this cloud hanging over me for the rest of my life. I think once you have cancer, you are always concerned that it will come back.

I think I shall end my post here. I’ll post my PCR test results as soon as I find out, maybe in 2 to 3 weeks. Wish me luck!

Day+342 (11 months, 8 days)

I can’t believe it’s already April. Time flies so fast!

My postherpetic neuralgia (post shingles pain) is not bothering me as much anymore. It still hurts once in a while and the area is very sensitive to touch, but I sleep through the night now and that’s good. I am still on 2 medications so I don’t know if I am really getting better or the meds are simply working now. I will have to wean myself off the meds soon and see what happens.

My Hickman Line exit site got infected again. The infection was deeper inside the skin this time as compared to my more superficial infection in January. I could tell this was the case because the site started swelling up with a bigger bump filled with pus. So I called PMH and got to see Dr. Lipton on an emergency basis. He wasn’t supposed to see patients that day but he was at the hospital so they paged him for me. As soon as he saw the site, he ordered it to be removed immediately.

Dr. Santosh was the doctor who removed the line for me. He first gave me some freezing around the site and then I felt no pain, just lots of tugging and pulling. Basically, he removed the tissue attached to the “cuff” of the Hickman Line with tweezers and then he pulled the whole line out. He then used several alcohol swabs to clean the inside of the wound and scooped out as much pus as possible. Then he “packed” the hole that remained with some gauze and put a bandage on it.

Of course, when the freezing wore off, there was lots of pain around the site. I have to go to a community clinic to get the wound cleaned and dressing changed every day. They also cultured the line and found a bacteria so they put me on antibiotics as well. I will be seeing Dr. Santosh again this coming Monday – he wants to check that the wound is healing properly and he also wants to do some more bloodwork to make sure the bacteria is gone.

My next appointment with Dr. Lipton is at the end of the month. I’ll be getting the usual bloodwork done, as well as the PCR test to see if I’m still undetectable. My fingers are crossed for only good news!

Other than the lingering shingles pain, and the Hickman Line infection, I’ve been feeling alright. I’ve gained a lot of weight, which I am not happy about, but I know I can’t cut back on calories because my body needs a lot of calories to continue recovering. I just have to cut back on bad calories and exercise more.

Some positives this month:

* I got my first haircut since I lost all of my hair. Finally, I grew enough hair to justify getting it cut. LOL!

* The removal of my Hickman Line is bitter sweet. I kind of miss it in a very weird kind of way, but its removal constitutes another step towards recovery. I can’t wait until the wound recovers so I can swim and maybe even scuba dive!!! (I’m probably getting way ahead of myself here but you can’t fault me for dreaming!!!)

Day+321 (10 months, 15 days)

I am so sorry that it has been so long since my last post.  I wasn’t expecting that the shingles would take so much out of me.  After my last post, my shingles blisters dried up nicely and I was no longer contagious.  In all honesty, my shingles episode wasn’t that bad and I thought I lucked out.  What really got me by surprise is what I have now, called postherpetic neuralgia.  It SUCKS!!! And I’ve been feeling like CRAP!!! It almost sucks as much as my BK virus episode last year, and THAT REALLY SUCKED!!!

Anyways, postherpetic neuralgia is a nerve pain (or itch or burning, etc.) that occurs at the site of a previous shingles rash that has already healed.  It can last for months or even years.  It’s very debilitating because the pain or itch can be INTENSE and CONSTANT throughout the day and night.  For the past month, I was unable to sleep throughout the night without being woken up by pain or itching.  So I tried to catch up on the sleep during the day.  So I was basically in bed 24 hours a day.

I have already tried 2 types of medications, both of which did not provide any relief.  I am going to try a third type soon to see if it will make any difference.  But I am happy to report that I think the pain is subsiding somewhat.  I say “I think” because, apparently, it could come back without any warning!!!

Sooo, that’s why I’ve been “quiet” for the past month.  I’ve just not been in the mood for anything.  I can’t believe I’ve been continuously sick for the first 3 months of 2014!  Aaaarrrgggghhh!  I guess it doesn’t really matter cause the weather has been really bad and I haven’t really missed anything.  April is the first anniversary of my transplant and I hope that brings me better luck!

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!

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

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!!!