I have received my Radiation schedule and it’s a bit daunting.  I will get 20 treatments, meaning that I will be tied to a five day per week schedule for a month at least.  Poor poor pitiful me… I may not be able to spend as much time at the shore or the mountains as I would like to. Clearly a first world problem.  

However, I understand why.  They are treating an area that has been previously irradiated . The body “remembers “ being treated, and not fondly.  To achieve the dose needed to shrink our friend Crassius , they want to administer it in smaller fractions over a longer period of time. This apparently avoids some side effects. Hence the extended schedule.  They are using photon therapy because it is equivalent to proton therapy in my present situation. 

I asked about particularly nasty side effects like holes in other organs, and when they might manifest themselves.  The answer is , both sooner and later. There are two ways that such nightmares can occur. The photon beam can burn a hole in an organ all on its own.  However the tumor can also shrink and scar and thus pull away from tissues it has invaded ( in my case, my lady bits), and thereby leave holes.  This places me at risk of sepsis, which may be controllable with oral antibiotic‘s or could land me in the hospital needing IV  antibiotics .  I can’t go back to vitamin C, infusions, and oxygen therapy until after the radiation treatment is finished.  Antioxidants conflict with the radiation. 

They will likely hold the FOLFOX during radiation but continue the Opdivo to exploit the beneficial synergy between the immunotherapy drug and the radiation.  I hope it’s not just a theoretical interaction. 

Assuming I survive and am mobile, I will reconsider the alternative clinics after radiation. Clearly mainstream medicine is at the end of its resources for me. I hope to have the energy to find out more about the foreign options. I hope that SOMEONE knows someone who has visited one of these facilities!  Send them my way. I have questions!

I expect to feel like something put through a dispose-all sink grinder after infusion this afternoon but I did bounce back last time and I pray I will do so this time as well.  

When speaking with Dr. Metz’s nurse practitioner, I raised the question of whether or not he needs more computing power. It seems antiquated that it should take so many days to compute a course of  treatment. While I am not in a position to make  enormous donations to buy supercomputers, this strikes me as an extremely targeted focus for fundraising.  Penn, after all, is the home oqf the great original ENIAC computer. Why anyone at Penn should be lacking in computer power is beyond me.

BREAKING NEWS UPDATE:  Bad news , good news.  My white blood cell count, per today’s blood work, has dropped to 1.6 , which is very low.  This is too low to safely be administered FOLFOX today. On the other hand, this means not wearing a pump this week.  That may free me for something pleasant. 

There is apparently no way that mainstream medicine can suggest that I can do for myself to raise my white blood cell count. The bone marrow needs to rest.  Of course I will look up what is known in the alternative world about boosting white blood cells.  There is a drug called Neulasta that I was approved for during a previous chemo regimen but did not need after all.  It is self administered subcutaneously and stimulates bone marrow to produce white blood cells. 

The plan to discontinue FOLFOX during radiation, as noted above, remains in place .  FOLFOX increases the negative side effects of the radiation treatment . This means that I won’t have FOLFOX  again (and therefore no pump) until probably at least two weeks after the end of the month of radiation.  Something to be glad about!  Dosage of FOLFOX will likely be lower. 

So - lots to process.  Meanwhile I am grateful for every day without pain.  Thank you !!