Tuesday, December 9, 2014

Start of second 3 week cycle of chemo

Sorry I have been negligent in notifying folks about this surgery and chemo in advance and keeping them updated through this blog. To be honest surgery and chemo is just not as exciting and adventurous the second time around... Yesterday I had the first treatment of the second 3 week cycle of chemo. This means I was dosed with Carboplatin and Taxol (what I refered to as my Flower Power drug during my first treatment because it is derived from the Yew tree. Things went well. I had a Taxol reaction during the last week of my first 3 week cycle but we managed it with benedryl and decadron and slowing the drug infusion and all was well. When I say "we" I really mean "they", and specifically Elizabeth the wonder chemo nurse. See posts from first chemo in 1009-10 for come complete descriptions of these drugs and the process and Elizabeth. My contribution was mostly interrupting a conversation someone else was having with Elizabeth by declaring loudly "Elizabeth sorry to interrupt but something is wrong. I can breath fine but my chest has suddenly tightened and now I am starting to have sharp throbbing pains in my back." It was a call for help but it makes me feel empowered to think of it as a carefully crafted description by a medical professional that set the proper response into motion. Even if I had no idea whatsoever what the proper response would be. I knew the professional i was consulting (Elizabeth) would be on top of it and she was. I was also started on neurotin, a neurtropic drug mainly used to treat seizures. But also used to treat the neuropathy that I developed during my first chemo. That neuropathy improved but persists and probably I would eventually need it during this round for that reason. But it was started earlier because it also is used to treat restless legs syndrome which I get in spades due to the Benedryl. Seems to be helping, So far I have not wound up upside down in my chair or otherwise entertaining the other patients while embarassing myself by odd behavior (probalply due to Elizabeth's wise deicision not to use benzodiazepams). Last thursday I also met with a Radiation Therpist - Dr. Grifffith in Gainesville to discuss the possibility of inserting a Radition Therapy treatment into the chemo. This is not standard and unlike my first treatment it is also not part of a randomized clinical trial. But given the localized nature of my recurrence, adding RT to that spot may increase the possibility of long term remission or even ablation leading to cure. I think it is a risk work taking. WARNING the paragraph that follows may be of interest to medical professional but too graphic for others. Please feel free to skip. It also is becoming clear that I have one of the possibile complications of this surgery - a leak into the vagina that either resulted from the surgical efforts to remove all the adhesions (scar tissue) that was trapping the recureent tumor (situated just between the vagina, bladder and intestine and adhereing it to all while strangling a ureter leading to hydronephrosis). Or it may be due to tumor residual not removed at surgery. The apperanace of a little nubbin visible during the vaginal exam suggests the latter. Since the treatment approach at this point would be the same whether this is a surgical complication or a maliganent complication, which would be to continue Chemo and RT to get rid of the tumor and hope for healing by secondary intention (allowing the wound to heal itself without surgical intervention0 for the surgical part, we decided not to repeat the vaginal exam for purposes of a biopsy. in addition to driving up the cost without changing the approach to treatment (taxpayers applaud), it was painful and upped my use of hydrocodon from 1 - 2 per week to 4 within 36hours. So the plan is full speed ahead. I and my medical professional have decided that I can drive myself safely to and from chemo as well as labs and i am implementing that plan. Instead of recruiting drivers ( stuck having to spend a day in Gainesville) i will be recruiting a list of folks willing to be on a call list in case something during treatment suggests I may not be safe to drive myself home in the evenings. That will be easier for everyone. Although one of my driver volunteers suggested that I might be being too macho and offered to drive me anyway. I do not reject good company of a driver when offered! So Alice Rose I look forward to your company during a future chemo session and thanks for driving. So on ware and upward. it looks like the course from here will be 3 rounds of chemo (already in week 2 of the second round) and then about Jan 12 - 15 switch likely to 4-5 weeks of radiation therapy (RT) followed by the additional 3 cycles of chemo - taking treatment through April. Sigh and probably forceing me to miss my nieces wedding March 21. But as as act of optimism I have ordered the black tie equivalent of the PHS officer uniform (she is marrying a Navy officer). If I can't be there in Rhode Island maybe they can skype me in for some part of the ceremony or reception. No point in missing an opportunity to make it clear that I outrank the groom and most of his friends (just in case). Kidding on that - she made a great choice and I see no need for shows of force. Still ... once I learned not to giggle when military folks snap to attention and salute it became sort of fun now and then to be treated with respect just based on the rank on the sleeve. Stay tuned. I will try to be better about updates but now I have to go to work.

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