Will I ever feel well again?

That is the question that goes through my head. It feels like I am made of concrete, walking through mud, and that I just can't support my own frame. I just crave to lay down most of the time. 

I started the new medications Monday, the 18th after 40 vials of blood being drawn and meeting with Kelsey Watson, NP who works with those on the trial. Interesting that they have less formality in their protocols than the other times I tried "targeted drugs." Each time they make you meet with a pharmacist for "chemo teach," detailing what you should do if you get different side effects, and teaching you all about the drug. None of that this time. 

The drugs are interesting. The anti-viral (Valganciclovir) goes after the Epstein Barr Virus in the cell. When the HDAC inhibitor, Nanatinostat,  then interacts with it, the anti-viral becomes cytotoxic (kills cancer) and the cell dies. It is not traditional chemo that kills all newly dividing cells, healthy and not. Targetted drugs work on a specific "target." 

The day we spent 7 hours at the hospital and started the drugs (we had to wait 2 hours for new labs to make sure blood levels were reached), I forgot Prednisone and paid pretty dearly for it. My knuckles were easily double their normal size and so painful by the time we got home. The back of my left knee always swells up. Fingers and toes ache and I feel just all-around miserable. I couldn't wait to get home to take that drug. I am now only taking 10mg which means I still feel all these things a lot, but it is manageable. I have some arthritis that is worse as well. The plan is to do 10mg every other day starting next month. 

It's a pain that they schedule me without my input weekly for appointments an hour away from home. I have asked the scheduler (Chelsea) if this goes on for the life of the trial. She explained that, after 28 days, it goes to once monthly and that I can send days I can not do so they will try not to schedule me those days. The visits need to be within 3 days of when they want it, so there is some leeway. Someday I will feel like I can plan life again. 

I didn't feel anything from the drugs the 1st day or 2; I was worried I'd feel generally ill like I did with the other drugs I've tried. The fatigue continues to be debilitating, though. I can push through church or even having the grandkids for awhile. But it is weird. The 3rd day, I felt more normal than I have in weeks. The rashes had subsided and I kinda had to make myself take a nap and not overdo it. Unfortunately, day 4 - 7 have been pretty hard to function. The rash came roaring back last night; the dermatologist's (Colorado Springs Dermatology) office had a flood last weekend and cancelled my 3 appointments this week. They kept thinking they'd be open the next day but cancelled day after day. I will now go to their other office down in Southern Colorado Springs, starting tomorrow. It's already worse tonight so I'm anxious to get back and see if it helps. Some good news - my copay used to be about $100 per week but it just went down to about $10 per week. 

I have no idea if there is any reason to think this is connected to my current health challenges, but about once a month, I wake up in the morning with a very red eyeball, having obviously broken a blood vessel in my eye. Today is by far the worse, with the lower part of the eyeball covered in a clot-looking mess. My poor grandkids were so worried it hurt or wouldn't heal. I've looked them up before and everything I find says they aren't dangerous unless they don't heal, and mine have always healed. I will talk to the doctors in a few days about it and also the Ophthalmologist I will see the beginning of next month for other issues. 

So, I continue to take the days as they come. I need to get my taxes done and other things are bugging me but, what's ya gonna do but take it in stride.