Chronicle of a Stem Cell Transplant
(and on through to the other side)
Saturday, February 12, 2011
A gathering of Kirsten's family and friends
We invite you to be with us on Sunday morning at 10:00, February 20. As Kirsten requested, we will gather in Cates Park in North Vancouver to be together and with her. Kirsten would like people to wear their favorite colours, bring a flower with them and, if you like, a memory, story, or poem to share. Children and dogs are welcome. Please email email@example.com with any questions. Thank you.
First let me apologize for being MIA for so long and causing many of you to worry. I am OK, but December was a hellish month.
The problem we are facing now is that the Revlemid seems to be holding the Hodgkins at bay, but it is driving my blood counts down each cycle, so much so that I wound up in the hospital last week.
At about 10pm, Ian was tipped off by my incoherence in answering some of his questions while I was having a little melt-down. We took my temperature and I did have a fever so it was decided I would go to VGH Emergency, where they were concerned I might have an infection of some sort.
It turns out my hemoglobin had dropped to 44, so I received 4 units over the next day while they ran a lot of other tests. While the care was more or less exemplary, I found myself becoming highly stressed in the hospital and struggle with not viewing it as a traumatic experience.
I have felt a lot of anxiety lately. I am unsure and upset with the compromised state of my body. I am struggling to find purpose and meaning, and how to regain some sense of normalcy in my life. But, I know getting on here is a good start as I just haven't had the energy or inclination until now. Thank you, dear Emily. Your visit tonight couldn't have been more timely to give me the push I need.
Love and thanks, too, to all of you who have sent, and continue to send, your messages of support and keep me in the loop with your updates despite my lack of reciprocating. I look so forward to eventually being able to remedy that.
...I am still not feeling great, but "they" say I am making improvements, so I guess I will go with that. I am still in bed a lot of the time, have lost a lot of weight, and am having to regain my muscles/strength to walk without worrying everyone.
Since I last wrote, I've started a new chemo, Revlamid/Lenolinomide, which is just one pill taken orally for 21 days, then 7 off. I've just finished the 21 days and haven't had any major side effects, but because it is only one capsule daily, it will take a few weeks to see if it is having any effect or if it is going to give me any trouble.
My skin is still uncomfortable due, now, to excessive dryness, so it burns when I stretch. What I wouldn't give to be comfortable in my own skin again. I've had more than a few cries these past few weeks. I just want to be a able to do at least some of the things I used to take for granted, like take Finn for a walk.
I thought I'd do a light and easy hair update. Besides, who can stay sad when George Michael is wiggling his butt in your face.
But I digress...
Now, where has all my hair gone?
It seems just one dose of the Vinblastine caused it to start falling out, and, like last time, it also changed the texture. It seemed really waxy and hard to brush, but it was when I woke with a Marleyesque-dreaded unicorn horn that I knew I had to take matters into my own hands, hence the cut with my Ikea scissors.
A little Pat Benatar, but not bad, I thought. Until...
My TCM practitioner, yes, TCM practitioner, of all people, informed me as I was lying on her table that...I had "a tail."
Of hair? I implored in horror.
Yes, about this long...
Well, stirrup my pants and put me in an Wham video.
Who could know such a thing when one cannot see the back of one's head? I thought that's what friends and family were for - to tell you when you have broccoli in your teeth or when your fly is undone. Or, say, when you are sporting an 80s rat tail some twenty-five years after the fact.
I thought you people were supposed to be looking out for me. Meanwhile, I'm strutting around town (ok, maybe just the bedroom) all week with a tail that was apparently long enough to braid. Yes (be still my beating heart), braid.
But I'll get you, my pretties.
There's nothing a little El Debarge for Christmas can't fix.
Thanks, Dallas. You put it better than anybody else today.
But in my own words, finally a note to update as I have been completely unable to do this in any sort of reasonable time frame, via phone, email, or here (laptop death by falling has not helped matters, and, yes, it is possible to destroy a Mac, especially when it throws itself off the bed and hits a chair on the way down).
Things have been rough.
Things have been down right awful with the exception of the last few days.
While we did manage to get a handle, more-or-less, on the itching through the use of Atarax and one dose of a chemo I've had in the past, Vinblastine, the chemo created a new set of problems that continued to leave me pretty much bed ridden for the last several weeks.
When I've had Vinblastine in the past, I've tolerated it quite well. This time I experienced the fairly rare side effect of nerve pain in my face and jaw for about 3 days which was excruciating. Imagine thousands of pins being poked through your face from the inside.
Actually, don't. Who wants to think about that?
The Vinblastine also really knocked my counts back which were still trying to recover from the Bendamustine. I was beyond tired and also couldn't regulate my body temperature, so every time I moved (which was rare, but when I did), I would spend nearly an hour trying to get warm again.
When I was up and at least able to watch tv in the living room, it was usually in my ski jacket with two or three blankets and a hot water bottle. Oh, and a touque. Finally, I had three units of blood transfused, which didn't give me the expected boost right away, but I am definitely feeling an improvement these past few days.
I have been out of bed and doing light (very light) activity like a few laps around the inside of the house to try and build my stamina. I feel like every muscle I ever had is gone from all the time in bed. It's getting better, but my core muscles also really atrophied so it's hard to even stand up straight, but that is improving.
So now what?
The CT scan I had last week indicated "stability", more or less, in the existing areas of disease, but the disease in my liver has grown.
Dr. C has been queuing up Revlamid for me which is a drug normally used for multiple myeloma, but has shown novel results in some cases of Hodgkin's. The Cancer Agency would not agree to pay for me to try it (even though it is a drug they have on site), but, fortunately, the drug company has a compassionate use program and we have extended coverage that, to our surprise, covers 80%.
I was hoping for more time to recover before having more chemo, but, for obvious reasons (my liver), it is best if I start as soon as possible, which could even be in the next few days.
Of course, the decision to start or stop any drug is up to me, but I'm just finding lately it's one thing to say refractory Hodgkin's can often be managed as a chronic disease, bridging the gaps from one emerging treatment to the next, but it is another thing to live it, and I am tired.
On the flip-side, I could begin the Revlamid and find I feel a whole lot better, or, dare I say, have this be the drug that finally finds the right pathway to the HL and murders the little fuckers (sorry, but it's a fuck kind of day).
Regardless, I guess anything is still possible, I just don't feel that way right now, and I would like to.
It's just so hard to feel hopeful and strong when your body feels so weak.
I am a 32-year-old (now 36) female with Hodgkin's Lymphoma, a type of blood cancer affecting the lymphatic system. I was diagnosed in April of 2006 after an x-ray revealed a 10cm mass in my mediastinum (the cavity between the lungs and the chest). Subsequently, I've had five months of chemotherapy, but the disease has proved to be refractory, meaning it is "restless" and not responding fast enough. The next course of treatment is a stem cell transplant, the likes of which I will try to chronicle here for family, friends, and, well, voyeurs if you don't fit into one of those two catagories... In my "normal" life, I am a writer, animal lover, pseudo runner and paperphile (don't ask...) In general, an aficionado of little, but connoisseur of much... UPDATE - March 2008...After a stem cell transplant, 20 rounds of radiation, 10 more months of chemo and 5 more rounds of radiation, I am now doing clinical trials. UPDATE - November 2008...One trial down (MGCD0103). UPDATE - May 2009...SGN-35 trial (12 cycles). UPDATE - Feb 2010...Bendamustine (6 cycles). UPDATE - Oct 2010...finished Bendamustine and hoping for continued stable disease. Jesus, who's writing this stuff, anyway?