I've never experienced bone pain to speak of from either the Neupogen or Neulasta marrow stimulating drugs, but this time around I see what all the doctors and nurses have been talking about. The past two days have been full of horrendous pain in my back - lower and mid, in my face (primarily my cheekbones), my chest/sternum and my pelvic bones.
I remember my nurse practitioner at Yale saying that I may feel like I'm having a heart attack because of the chest pain. Though, I don't know what the onset of a heart attack feels like, I have seen people in the movies clutching their chests and I've found myself rubbing mine constantly.
When I say bone pain, I literally mean pain IN my bones. Last night while laying in bed it felt like my pelvic bones were under attack by tiny pricking needles jabbing at them from the inside. It's a dull constant pain with an occasional "spasm" of sorts when the little men with the needles come out. I won't take pain meds because they make me feel worse in the head than they help me in the body. I have however conceded to taking sleeping pills, which have helped me to sleep through the night for the first time in weeks. Relaxation methods just weren't doing it and despite all my resistance to them, the fact that my body desperately needs good sleep was more convincing then my fear of drug dependency. Now? No nightmares. No waking up from the pain. And I'm still sober enough to be able to make it to my minimum of two nighttime bathroom trips without falling on my face ... or wetting the bed.
I initially thought I escaped it, but I guess the hand and foot skin issue that can occur from the Doxil waited until now to creep in. It's by no means as severe as it could potentially be, but it still hurts. The skin on my hands and feet feels burnt and raw, and if I don't constantly lotion with the "Udderly Smooth" lotion they gave me (formulated for cow's utters), my skin actually starts to peel off. It feels like when you fall off a bike and scrape your elbow, but only the top layer of skin is left on the pavement, leaving all the little nerve endings exposed to the air. Prime set up for pain when the wind blows past it.
The fatigue is also tremendous. It comes close to how I felt after the DI-CEP. The chemo working against the cancer cells and the Neupogen working my marrow take up a lot of (wo)man power. It's my brain and my body that are so, so tired. There's no pushing through it. I've just been working on balancing and making sure that I accomplish at least one set of physical activity and one productive thing on my list each day so I don't feel like I'm wallowing through the chemo sea like a limbless anemone.
I think that the emo teenager behind the Starbucks counter yesterday thought I was a recent nut house release. I first stared at him for what felt like eternity. Then I stared at the menu behind him for another awkward eternity but I couldn't digest what it was. I literally just saw white words on a black board and held up the whole line until I could put a few of those words together to make a coffee order. As much as it irritated the barista for me to throw him off his fast track, the venti, foamy lattee of choice did help make things a little better.
The weather has been gloomy and rainy which has complemented my physical state - for better or worse. I like the onset of crisp, fall breezes, but the sun could come out any time now. I'm sure that the dreary skies are a contributing factor to my gloomy whining. Also contributing is the weight of the unknown. I still don't have a final treatment plan/timeline ... rough estimate as to when we'll be starting all the allo transplant jazz is mid-September. I have major problems when I don't have answers and next steps and I am working very hard on changing that about myself because it doesn't do me any good to freak out about what I can't control. I need to focus that energy on things that I do have influence over.
Everything depends on my Sloan doctor's review of my PET Scan, which is coming up next Thursday, Sept. 2. Everything else will fall into place after that. I have to trust the process and let go. The only problem is that it's the only thing I can think about. And if I'm not thinking about the transplant, I'm thinking about how to not think about the transplant.