When the rubber meets the road

I got sick the end of October and feel like I've been fighting a battle with my body since, with a very cherished break in January during which I hosted dear friends. I felt pretty good that month with lots of energy, thankfully.  February had me feeling like I was racing the clock. The lymphoma appeared to be "taking off," the way the doctors had predicted. I could have gone into the hospital and started CHOEP chemo but I was hoping to make it till I could start the clinical trial. I would picture myself trying to get on a moving Merry-Go-Round that would moving too fast. Would I make it? I couldn't get in to see Dr. Haverkos until mid May. I was so so happy when I started it - it's just a simple combo of 2 drugs as I think I've described before.  Unfortunately, I started feeling worse and worse on it over time. I was scared to tell them how badly I felt but I was honest.  After meeting weekly with the clinical coordinator (Celeste)  of the trial and various ...

 I'm still adding the anti-nausea meds slowly. I think the one I take at bedtime is making it really hard to wake up in the morning. I doesn't seem to help me fall asleep, however.  I noticed some itching in the late afternoons/evenings a few days ago and it has increased until last night I more fully realized - I am getting no simple answers here. The rash is hot, raised, itchy, and red. It is worse on my arms and thighs and makes getting to sleep hard.  Dr. Haverkos thought the rashes would subside with treatment. We really have never known what triggers them or brings relief. They also look like the RA rash. I have some arthritis but who knows. I have had people suggest everything from changing to Irish Spring soap to taking B1 supplements, to Calamine Lotion. I've used the prescription medications and lotions. Nothing really helps - but some things like baths full of oils and salts and such seem to distract for a bit at least.  I did start something today suggest...

Since I use this blog as something of a medical journal, I thought I'd write down what has changed since a zoom appointment with a PA at the oncologist in Aurora, Kelly something. She specializes in the nausea problems for their cancer patients. I'm so conflicted as they stack medication after medication, advising me to not to start back taking any supplements, when it is common knowledge that some of these meds deplete the body of certain vitamins and minerals. No wonder so many patients go down hill.... 1st thing at wake up:   Levothyroxine 150mg. (I had my thyroid ablated with radiation many years ago because of out-of-control goiters)  Liothyronin 5mg  1/2 hour later - before breakfast take Omeprazone 40mg for stomach. I'm so uncomfortable with these drugs -  (Not starting yet until see how Olanzapine works) - at least 2 hours before or 4 hours after study meds.  1 hour later take Ondansetron (Zophran) - 4 - 8 mg. (currently taking) With Breakf...