Tuesday, December 23, 2014
Today was the third and last week of chemo for Cycle 2, officially putting me one third of the way through completion of chemo. Today was also the first transfusion of this chemo regimen, resulting in a long day in Gainesville GA that did not see me back to Atlanta until nearly 10 pm. But I am much refreshed now that my hemoglobin is no longer hovering around 7. All went well and I look forward to moving on through cycle 3 over the holiday season. Balsam and I are looking forward to having the rest of the month off from work. Plans include minimal Christmas decorating this year, depending mostly on sweet smelling miniature rosemary trees and a few Santa hats on various statues around the house. I decided I deserved one Christmas service and yesterday morning at 8:45 seemed the best bet for a service not packed with people who staggered in despite coughing and sneezing. It went well and I got to take in the live manger, complete with a miniature Highlands Cow that reminded me of Scotland, adopted home of my nephew Judson and Blair Cowan. Christmas day will be split between visits with Aunt Marian Sprinkle Graves at her skilled nursing facility where Balsam loves to go for generous loving. Demented elderly people who loved dogs in their right minds continue to love them now, and generously share lots of things they held back on earlier in life (including partially chewed meat from their own mouths if we arrive at the right moment relative to meals), and time at home writing thank you notes, mailing Christmas letters and putting together the jig saw puzzel we recieved for Christmas from the Nebraska Thomas - Hutchison family last year. I look forward to a visit from my Arkansas cousins Ruth and Charles Thomas on Dec 26, and to bringing in the New Year with my local Gang of Girls who have rallied to provide incredible support through my surgery and chemo to date. I hope the holiday season and new year bring moments marked by the warmth of family and friends, the assurance of faith which ever faith you hold sacred, and renewed hopes for peace in this world for all of you.
Monday, December 15, 2014
Today Caroline McNeel drove me to chemo despite my insistance that i was perfectly capable of driving myself. I had a great deal of fun on the way up, the way back, and during the lunch at 2Dog cafe. Adn Caroline insisted that the time committment was great contribution toward finishing addressing her Christmas cards and had evidence to support the claim. And I am reconsidering Alice Rose's suggestion that perhaps in deciding to drive myself I was being a bit "Macho". I may be able to drive myself but it is more fun with company so I am again in the business of recruiting drivers. Or at least not rejecting offers since I can drive myself for now at least if I am driver=less. Chemo went well. Another much smaller taxol reaction - suggesting that I can anticipate needing more premeds (variations on benedryl and increasingly powerful steroids) and slower infusion times this time around. I commented to Elizabeth (the super chemo nurse who is largely the reason I stay with this practice instead of returning to Emory) that my stamina seemed to be decreasing faster this time around and I occasionally get dizzy when I stand up, which did not happen until much later in the chemo experience last time. I wondered if my blood counts were dropping. Elizabeth tells me it is common the second time around to have less stamina in response to chemo and to experience more side effects more often than on first exposure to the drugs. So that is that. I continue to try to accomplish a thing or two a day - usually successfully but am already sinking into the napping in front of the TV thing. And my interest keeps lagging for the Patricia Cornwall book I am reading - but I think that may have more to do with the trend she has established for abandoning plot for instead detailing second by second interactions of the character so i have been reading for days and am 3/4 way through the book but we are still less than 6 hours further along in the actual story than when we started. Perhaps the author has developed an obsesssive disorder? if this is an intentional change in technique I think I may start getting her books at the library in the future to save that feeling that I need to read the entirety of the book I bought to justify the expenditure. On another note, in response to the questions about my Christmas plans - I have not figured them out yet. I have not spend actually a lot of time thinking about it, although I should. Probably I will stay in Atlanta since Thanksgiving has become our big extended family holiday while Christmas is now precious time for my siblings nuclear familys to reunion. My habit is Sylva, but this year I wont be working at Cherokee and the energy required to drive 2.5 hours for the Christmas Eve service and visits with friends and open house seems a bit too much. And I need to be in ATL for labs on Friday. Maybe an open house Christmas Day evening for anyone around who wants to bring leftovers and drop by for dominos? STay tuned. For the moment I am getting chemo and Balsam (as of vet visit today) is getting treated for dermatologic allergies and an ear infection, all of which is easiest to maintain from home. Dog Hobble Hill - although in reciept of a Certificate of Occupacy - is still not completed of interior work or ready to move more furniture in than the one bed I have already deposited. So I suppose Balsam and I could spend Christmas there but it would be grim and lonely since i can't take my friends along yet. So probably staying in ATL but plans yet to be developed. Open to suggestions? Tomorrow's challenges: (1) try to finish paying all bills and filing paperwork. (2) Get Balsam to the vet for medicated bath. (3) Get into work to find out whether I have a replacement Blackberry yet. (4) draft a Christmas 2014 letter? STay tuned.
Tuesday, December 9, 2014
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.