I want to document this, so I have it for well bluntly for explanation on all the papers at my desk – the four page package on the new “protocol” we are doing – and also to let me poof it into words and let it go.
Yeah this is a very strong technique for me, that once I write something out I forget it completely.
I’ve often said that the reason for alot of people dying to cancer is the fact that they give up and give in – They decide that dealing with the frustrations are more than they are willing to bear. It has often struck me like my time at the fitness camp where they kept pushing and pushing and you learned that what you “thought” was your limit was clearly far away from your limit because not only did you not die, or pass out — you really didn’t get much more than super tired and a little – yes really only a little sore after 8+ hours of fitness. I am capable of enduring alot more.
The new protocol is three medicines – we are going to shorten for the sake of ease of speech the H one – that I have taken for 5 ish years, that is a part of wholely a part of the protocols from the past – It will be the infusion part and the only part that my doc office is able to get/give me.
The other two parts of this protocol are the C/K part and the TT part – both of which I need to get from a specialty pharmacy. I thought that meant “I could get these from the same place, just a specialized place” Like medical mamajuana I have very few choices – apparently when it comes to chemo drugs – one of the tools you fight the second likely killer of humans you only get specialized places. Okay I understand.
Apparently there are “specialty pharmacies” that my insurance approves – they can pick and chose. Apparently not all of them can source the C/K or the TT – so it would seem after days of struggling to get approved thru one or another – having talked to the handful available at this point – there isn’t one that is “allowed” …. I wonder who it is giving permission for my drugs? — there isn’t one “allowed” to supply them.
My mind goes back to snow apocalypses to the not being able to get my anti seizure meds – to there being supply shortages – to the fact that all of these specialty pharmacies are NOT in Texas – to the mail issues and the delivery concerns …. so so many things …. to P deciding about potential transitions…. so so many things.
After spending more than 8 hours – closer to 10 of my time on my phone talking to super nice, very unable to assist me, people at many of these different companies – I still do not have medication on the way or in hand for a treatment my docter had wanted/planned to start on Thursday.
There is a larger portion of me that knows that stress is extremely counter to healing. Time and planning and the unknown in this is extremely stressful? Its like playing my own game of iron chef. “will she make the deadline” …. who sets the deadline? what is the purpose of the deadline? “are my thoughts helpful, how do they behave?
Most challengingly is the fact that I don’t feel any closer to a resolution on this then I was at the beginning when my oncologist said to me “we aren’t doing chemo today” ….. well news flash we might not be doing chemo every again! …. Because as the song goes “I have the power” and Healing > Stress over meds. …… Leaving aside the huge huge swing of super ridiculously annoyingness of having to “take multiple chemo pills twice a day, as well as get injections” and the likely really super uncomfortable side effects of said meds …. “like super likely to get diarrhea! YEAH SIGN ME UP!” or “hair likely to thin even more” “WOOT! an opportunity to shiny my inner bald again”….. and the side effects less likely hat could mean untimely demise — but hey its supposed to extend my life right? …. Maybe.
Frustrations how you vex me into shaking my head and understanding – finally – why someone would call uncle about these things — I mean lets just say that the cancer overall hasn’t caused me as much pain, suffering, annoyance as the multitude of “things to make it less, things to help me live longer, things to fix things” … have done for me.
Overall, and in great abundance – Life is good – just all the tribulations are making me shake my head and wonder.