Day+192

There isn’t much change in my situation since last post. I am still taking Gleevec, albeit at a reduced dose (300mg) due to low blood counts. The doctor is monitoring my blood on a weekly basis. So far, my blood isn’t showing anything that says Gleevec isn’t working. Simple bloodwork isn’t very good at detecting what is happening at a molecular level though. You need the more sensitive PCR test for that. However, I can get that test done only once every three months – I suppose it’s an OHIP restriction more than anything. So, I really don’t know what’s really happening inside of me at a molecular level. Not until my next PCR test. That kind of sucks, but maybe that’s just the way it is. I should find out if I can get that test done more often, even if I have to pay for it myself. A lot can happen in three months inside my body. Testing every three months seems risky to me…

Other than that, I’m doing “fine”. I’m still dealing with post-transplant issues, like very dry mouth, very dry skin, eyebrows that fell off just recently, low blood counts needing transfusions, low energy, etc…but I’m not currently in pain or suffering an active infection, which I am very grateful for.

My colleagues from work gave me a VERY generous gift the other day. It was SOOOO generous I kinda felt bad. I was very touched. I’m so lucky to have them as my colleagues. I just can’t wait to get back to work, although I know it might take some time.

Zoey’s been looking at me funny lately, as if she didn’t know who I was. She wouldn’t come to me when I asked her to. She just looked at me as if she didn’t recognize me. I’m kinda sad at that. My own dog doesn’t even know who I am anymore cause I have no hair, no eyebrows, and rarely touch her. She now thinks my father-in-law is her “mommy”! I feel so bad…

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Day +183 (6 months)

I am writing this post live from PMH. I’m getting 2 bags of blood today.

My appointment with Dr. Lipton was yesterday. The long-awaited PCR test results came back and it was pretty much the same as the previous PCR test results, so Dr. Lipton thought that was a good thing – at least things weren’t getting worse over time.

HOWEVER, the fact remains that there are still CML cells in my body. The first line of defense is to go back on Gleevec (which I already started last week) and hope that the meds will bring the CML cells down to “undetectable”. What if it doesn’t work? I guess I’ll cross that bridge when I get there.

So, that’s where I’m at right now. Still fighting. Still hoping. Still faithful. Still Winnie.

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Day+176

***SIGH***

Yesterday, I went to PMH and saw Dr. Lipton. The PCR test result wasn’t back yet, so we didn’t have any definitive answers on that front. However, my bloodwork yesterday tended to indicate that my GVHD flare wasn’t that strong, and so any associated graft vs. leukemia effect wouldn’t have been strong enough to kill the remaining CML cells. So, Dr. Lipton advised to start Gleevec at 400mg – he didn’t want to wait around any longer. No, the word “relapse” wasn’t used, but all the signs were there…

Talk about kicking a girl when she’s down…yup, that girl’s me. Guess what’s happened to me over the past couple of days? My eyebrows and eyelashes started to fall out. ARE YOU KIDDING ME? NOW? ALMOST 6 MONTHS AFTER MY CHEMO/TRANSPLANT??? F*CK! F&CK! F^CK! It was only a straw that broke the camel’s back.

***SIGH***

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Day+169

Yesterday, I met with Dr. Lipton at PMH to discuss my situation and next steps.  I didn’t recall hearing any of the doctors use the word “relapse” so I asked him point blank, “Is this a relapse, and if so, how bad is it?”  He said let’s not use the word “relapse”, at least not yet.  He acknowledged that “something” was definitely happening inside my body, but that more time is required for my BODY to work things out.  Great, my body can’t even figure out what it wants to do…

The mechanics of what is happening inside my body right now is complex and I don’t want to get bogged down with all the scientific terminology and stuff, so I’m going to try to explain it in layman’s terms as much as possible. 

As you already know, my latest PCR test results indicated that there were still CML (cancerous) cells in my body.  This means that the chemo/radiation and transplant, in and of themselves, did NOT kill all of the CML cells.  So, yes, this means that I STILL have cancer.

However, according to recent bloodwork, and how I presented in clinic over the past several weeks (i.e., having to do with my GVHD of the skin), there is reason to believe that I am currently having a GVHD flare.  Commonly associated with a GVHD flare is something called the graft vs. leukemia effect or “GVL”, where the donor stem cells are trying to kill off any remaining CML cells in my body.  So, right now, the recommendation of Dr. Lipton is to let the GVHD and the GVL effect run its course naturally as much as possible, without any medical intervention.  Hopefully, by doing this, the GVL effect will be successful in killing off all of the remaining CML cells, or at least most of it.  I understand that the GVL effect can be very powerful in doing this, even better than any medication or treatment.

Of course, no one knows how this battle inside my body will turn out.  There’s nothing I can do right now but to root for my donor cells to FIGHT, FIGHT, FIGHT those bugger CML cells!  Please pray that my donor cells will win this fight!

Blood was drawn for another PCR test yesterday.  The results of this test will hopefully give us a clearer indication of whether the GVL effect was successful in killing the remaining CML cells.  The test results are expected in a week or two.  The waiting is killing me, but there’s nothing I can do.  At least for now, there is still hope that I might still win.                                    

 

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Day+164 (Relapse)

I jinxed myself. I know I did. Over the past several weeks, I bought tons of stuff online, like new jeans and tops and shoes, and books and I was even looking into buying a new mobile phone with a 2-year contract. I started to tell people I was doing well, I started to think about and plan for my future again. I really thought I was getting better. I even told Father Bill that God was looking out for me. I was wrong. If He was looking out for me, why did I have to relapse? Why?

I found out 2 days ago, at my usual appointment. The bone marrow transplant team doctors didn’t really have any answers for me as to next steps. They just said that CML was detectable in my blood again. The chemo/radiation and transplant didn’t kill them all. They would defer the next steps to Dr. Lipton, the CML specialist in Canada. I don’t know anything right now. I don’t have any answers. My appointment with Dr. Lipton is on Wednesday.

I am VERY ANGRY with Him right now. If He’s going to take me, why not have mercy on me and just take me NOW??? Why drag me through treatment after treatment, until I have lost ALL of my human dignity, before He takes me? How can He be so cruel?

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Day+156

I was a whiney, childish brat today. I woke up feeling totally upset with myself. My mouth and throat were as dry as the Sahara. My eyes were flakey and crusted shut. My skin felt so dry and thin I thought it would tear. My skin is so itchy I wanted to rip my face and limbs off. Daniel tried to get me out of bed to eat something, but I refused. What’s the point of eating if the experience is going to be unpleasant? Might as well just stop eating altogether. Yeah, my stupid mentality is causing me to lose weight again. I don’t ever remember being this light. Kinda looking like a runway model, just much shorter. Then, Daniel had to give me the talk, the talk about how compared to others, how well I am doing. I am still alive, I’m walking and talking and doing quite normal things. My GVHD is very mild compared to other patients and currently I am off all transplant medications. Then I think a bit and reluctantly agree with him. I AM doing well. I’m actually doing VERY well. In fact, I couldn’t be doing any better for a post-transplant patient. What more could I ask for? Well, I still felt like a brat. I still wanted to whine and complain about all the things I’m dealing with right now. But in the end, I got up and ate something and had 2 tall glasses of iced tea with lemon. Cold drinks seem to be keeping me alive these days. It’s the only thing that tastes right, and doesn’t hurt my mouth.

OK, I’ll stop whining now. So, I’m currently suffering from “mild” GVHD of the skin and mouth as in previous weeks. My doctor “threatened” to put me back on immunosuppressants if the condition got worse, but so far, he doesn’t think it got worse. I really don’t want to go back on immunosuppressants. They bring a whole host of side effects and it means taking a step backwards, so I really wish the condition doesn’t worsen. He wanted me to use some steroid creams for my itching but I tried not to. I don’t like steroids so I try to stay away as much as possible. I’ve just been using over-the-counter drug store stuff like Aveeno and Cetaphil for eczema – that’s why I’ve been wanting to rip my face and limbs off. They weren’t helping much with the itching. As for my dry mouth, I keep choking on food and they don’t taste good so I don’t like to eat anymore. That’s it, end of story. But I always end up eating a little bit cause I know I need it to survive.

My blood counts are generally rising nicely. Platelets, white blood cells, neutrophils are all on an upward trend. Red blood cells were on an upward trend last week, but they’re dropping again this week, so some good news and some bad news I guess. The doctor’s not worried about this though. At the moment, he’s more concerned about controlling my GVHD in a timely manner. That PCR test I told you about last post? Well, “something” happened at the lab and they don’t have the results, so the test was repeated and I’m STILL waiting for them. Recall that the PCR test monitors whether there are any CML cells detectable in my blood (i.e., if there is any relapse). So maybe I’ll have results next week.

Some very sad news. Jeremy Kong lost his battle with AML. I think he was only 3 years old. Please pray for his soul and for his family.

I received an email from Emily Walsh, Community Outreach Director for the Mesothelioma Cancer Alliance. She asked me to share a link in honor of Mesothelioma Awareness Day (Sept. 26). Oops, I’m late, but better late than never!!! So, if you have time, please click on the following link and find out a little bit more about this little known, but aggressive type of cancer: http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm

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Day+138

I can’t believe it has already been 138 days since my transplant.  I am blessed to be here today.  I sometimes forget how grateful I should be, but I always manage to stop and remind myself not to take anything for granted.  I know things could change in a split second.

Medically speaking, I achieved a victory this week.  All of my “transplant” medications have been discontinued.  All of a sudden, I feel like less of a cancer/transplant patient, except when I look in the mirror and see that I still don’t have much hair and I look pale all the time from not having enough blood.

My main struggle lately has been extremely low blood counts (i.e., red blood cells, white blood cells, neutrophils, platelets).  This was probably because I was taking valgancyclovir for my CMV.  Since I’ve stopped all medications this week, it is expected that my blood counts should slowly recover.  My fingers are crossed.  I am currently requiring 2 bags of red blood cells weekly, and it is expected that this will continue for several more months at least.

My GVHD of the skin flares up once in a while, with itchy, dry, rashy and scaly spells.  These are not bad enough thus far to be treated with steroids.  My GVHD of the mouth also flares up once in a while.  So one week, I may be enjoying my food a bit more and gaining a bit of weight, but the next week, I’ll be tasting nothing, hating my food and losing weight.  It’s up and down.  This is also not bad enough to be treated with steroids.  My GVHD of the gut is what is worring me.  So far, it has teased me on more than one occassion, but then it calmed down.  So again, so far no medication required in this respect.  I am definitely counting my blessings as I know these can all be quite bad.

I’d also like to report that my hair is finally growing back.  It’s fuzzy now, and you can still see skin/scalp so I still need to wear a hat, but there’s definitely hair there.  And my facial hair…well, it’s starting to fall off slowly now so I look less like a monkey and more like a woman.  LOL.  Maybe soon, I’ll even get up enough courage to post a recent photo of myself!  But only maybe…LOL. 

I’m expecting the results of my most recent PCR and chimerism tests soon.  The PCR test tells me if there are any CML cells detectable in my blood and the chimerism test tells me how much of my blood is my donor’s.  We want my donor’s blood to be 100%.   I will post the results as soon as I find out.  We will be running these tests every 2-3 months for the next little while to make sure the leukemia has not come back.

In the meantime, I’m trying to figure out whether or not it’s time to “get on with my life”.  Everything came to a standstill when I had my transplant.  Now, I’m trying to decide what I can do and what I still can’t do or shouldn’t do yet.  I always think that if I revert back to my old self, and do things like my old self, that I might somehow jinx myself and that my leukemia would come back.  That’s why I’ve been rather hesitant with getting on with my life.  For example, I’m STILL wearing my comfy hospital clothes practically 24/7.  I refuse to get out of those clothes except for when they are being washed.  I think I’ll need a bit of time to get over this.

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