Day 125 – Cards

My name is Rick and I have cancer with 12 more radiation treatments left…

My last few posts must have been incredibly wimpy and pathetic… why else would all you great people out there in blog-land start sending me cards?  But seriously, the convergence of various therapies has indeed been crushing me and the cards have been AWESOME.  The thing I like most is that each card, without exception, was snarky and funny and totally insane.  I am glad nobody took it too seriously and each one made me laugh.  Thank you so much for taking the time to think of me during this rough time… and for those of you that didn’t send me a card, no worries, I can feel you nevertheless.

Now on to how I am doing… The extreme lethargy from the endocrine issue seems to be under control with the recent round of steroids.  I am tired for sure but it is no longer as debilitating.  During the day I am generally OK but I still need to shut down around 9:30.  They are going to keep me on the relatively low dose until after radiation.  At that time, I will have another round of comprehensive blood work and we will evaluate from there.

The significant pain the radiation oncology staff was expecting has not blossomed as they expected.  Perhaps the nerve-deadening drug is working or perhaps my pain tolerance is high or perhaps I am just weird.  I suspect I am just weird.  Nevertheless, the four days off from the holiday combined with the drugs appears to be having a positive impact on pain.  The sore in the back of my throat is getting worse but the pain associated with it is not.  The pain in swallowing is still there but hasn’t gotten too much worse either.  The pain in my neck (no jokes please) is starting to amplify but it is manageable.  I exersize everyday and keep the neck as lubricated as possible form the inside.  I am supposed to use cream on it but alas I have been lazy in that regard.  In summary from a pain perspective, I think I have been lucky so far.

My salivary glands are indeed acting up.  They are no worse than before which means my mouth is pretty dry and gross all the time.  There is a weird taste all the time, which is weird because I have absolutely, positively no taste otherwise.  I think the weird taste is in my head.  I can no longer physically taste salt, sweet, vinegar or anything else that I can tell.  I tried old bay seasoning a few days ago and that worked but it no longer works today.  Let’s hope my saliva and taste come back quickly after radiation is complete.

My digestive system is in total upheaval.  I won’t go into gory details but it is not good.  I have been trying a wide range of solutions and I haven’t had much relief.  In the past, I couldn’t use too much stuff because I was being careful not to create a side effect of the ipi.  I feel that I am far enough away from the last ipi dose to no longer be overly concerned about that.  Each day I hope that this is going to be the day I feel better but alas it never seems to pass (pun intended).  I haven’t felt hunger in a few weeks, I am often nauseated and I never feel like myself.  To be honest, this is one area of treatment that is really wearing me down.  None of my providers knows exactly what the cause of the problem is but we all pretty much agree that it is likely the combination of ALL the things going on in my body at the same time.

As you know, I am not a big pharmaceutical fan; I rarely if ever take pills of any kind.  At the moment, I am taking 9 nerve-deadening pills (3 pills 3x / day), 1.5 steroid pills each morning and 4 anti-nausea pills (at each meal and before bed) each day.  I suspect many people take many medications but this is very very very unusual for me.  For example, after my major surgery in August I took exactly 2 pain pills and no over-the-counter pain medications of any kind.  And it was true I took some steroids for the ipi rash but I was done with that in less than a week.  Right now, I have something like 8 different prescription bottles in my medicine chest.  Freaky!

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