(pause ipod on the right if viewing)
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.