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.
Tuesday, November 25, 2014
Second Chemo today. Wonderful local playwright Karla Jennings volunteered as driver. Gave her a chance to avoid more diverting activities (like writing plays) and instead focus on grading papers. Gave us a chance to catch up. i loved hearing about her new play with
Yesterday my brother and sister in law John and Debbie visited here and took me for my second round of chemo - week 2 of cycle 1. Since it was week 2 i got only one drug - Taxol. The premeds include benedryl which gives me a bad case of restless leg syndrome and Decadron which makes me a little manic (useful for getting things done) and keeps me from sleeping well at night (not so useful). Overall things went well and i was grateful for the visit and the support. Today they drove off to the extended family Thanksgiving in VA (to which I fly tomorrow). But if anyone reading this blog has recommendations on how to mimize restless legs syndrome - I could surely use the help. Miserable. I took Balsam to board. He seems to really like the vet where he boards. He is always happy to be there and has learned to hope up on the weights and stand still. Maybe I am boarding him too often! One bonus - he will get a bath before I pick him back up on Monday - thereby perhaps smelling a lot less hound doggie when he returns. it feels lonely at home without him. I also got a haircut - deciding in a couple of weeks it will start falling out and it will be easier to go bald from a very short instead of a very mid length hair cut. What I did not anticipate was how cold it would feel with so little hair left to warm my head and neck... Halfway through the haircut I looked in the mirror and recognized the hair of both my brothers when they were in grade school and My nephew Judson. Oh those characteristic Chapman whorls and cowlicks and funny little ways that hair grows all over our heads. And I purchased a pair of pants that will enable me to comfortably walk around with loose pants without having to wear PJs. One month past surgery and it seems like time to being to appear in public in something other than PJs. I also mailed my last Christmas present (to Scotland) and got notifications that all but one of the previously posted gifts had been delivered. One more thing off the check list. Dec 2 I return to work 3 days weekly. That will be another challenge. All packed up, finished a load of wash and just waiting for the heavy duty cycle of the dishwasher to finish running before I can pack it up and go to bed. I am really looking forward to flying up to VA for the family reunion that Thanksgiving has become tomorrow. I hope all of you have warm Thanksgiving plans with people you love and plenty of things over the past year to feel thankful for. Louisa
Tuesday, November 18, 2014
Karla Jennings, writer, Mom of 2 14 year old twins, and friend and all around very generous person immediately offered to drive me today when I contacted her looking for volunteers. Based on my apparently faulty memory of last time around...I assured her we would be home by 2 pm even stopping for lunch en route. I was wrong. The first week of each cycle i get 2 drugs instead of one (for details see similar posts from 2009. They go into great detail about the drugs and so on). Since this was the first day of chemo period every thing went slower than usual and we had to take care of additional paperwork and housekeeping items. Also, i realized about 7 Am that this was the day the ladies come to clean. They are not fond of large hounds. So when Karla arrived instead of heading directly to Gainesville she had to drive us to Petsmart where Balsam goes for daycare when someone is working in the house whose efforts will not be aided by the presence of a large friendly and curious hound. On another day putting him into the fenced back yard would have been an option, but as we left it was in the 20s (rare in Atlanta in November) and the high for the day was predicted to be in the 30s, possibly not rising above freezing. So that was not an option today. Balsam was very fond of Karla. Maybe it was the beagle/terrior aroma wafting off her shoes invisible to human noses. Karla was a very good sport. Gaining Balsam's affections is not always a good thing. Fortunately she had not started driving yet when he decided to insert his face between her head and the window and deliver several large slurpy signs of affection with his wet sloppy tongue. Fortunately when it was clear we were running critically late Karla was able to get hold of her husband who managed to make arrangements to meet the first twin arriving by bus at 4 pm. We got home at 4:15 just in time for Karla to drop me and catch the second twin, arriving at 5 pm. After a quick dinner (we missed lunch) i had my next adventure ... driving again for the first time since surgery. I had to pick up perscriptions called into my local drug store (to prevent nausea which should not manifest before tomorrow AM but I will feel better taking the first pill at bedtime tonight. Easier to prevent vomiting than to interrupt it.) And to pick Balsam up from boarding. The place was loaded with dogs today - and among them more than the usual number of hungting breeds rather than the tiny little urban breeds. I suspect it was a noisy day at the Dogging Daycare division. Balsam came home happy, excited and tired. sleeping on his bed under the piano as I type. Tomorrow another day of bill paying and other paperwork organizing in preparation for the upcoming 6 months of declining function. Thursday I have to drive myself back to Gainesville for lab draws - glad I had opportunity to practice today before that longer drive. All went well so far. I am grateful for all the support both given and offered. And I am looking forward to a visit from Mary Lou Solbring - passing through Atlanta en route to visit friends - on Saturday night and the arrival of my brother and sister in law John and Debbie on Monday. Louisa
Thursday, November 13, 2014
The surgeon and I agreed that I was not ready to go back to work and should defer my return until Dec 1. More importantly, he informed me he wants to start chemotherapy next Tuesday Nov 18. That is several weeks sooner than I anticipated and I will have to scramble to find some folks who can drive me back and forth to Gainesville for chem on Tuesdays and again on Fridays for labs since i can't drive myself yet. the chemo will consist of 2 IV drugs that are the same or very similar to the 2 that formed the back bone of my treatment before, Carboplatin and Taxol. The total course will consist of 6 cycles each 3 weeks in duration. But the new thing is that because this was one isolated recurrence with all the other biopsies completely clean, he wants to consider throwing in a 5 week course of radiation therapy after the 3rd cycle of chemo. This is not standard but is occasionally done. the risk is that radiation of the gut which is hard to avoid if you irradiate the abdomen can lead to long term complications resulting in diarrhea, nausea, vomiting and malnutrition after 10 or more years (or did in the early days). But RT has improved over the decades and can now target better and minimize side effects. The potential pay off is the possibility that you may totally ablate the tumor cells, leading essentially to cure. I am leerly of RT but leaning toward thinking the possibility of outcome may justify the risk. My doc presented this proposal to his local tumor board today and apparently they favored it. He wants to also consult colleagues at MD Anderson and Cleveland clinic. I apprecaite his caution and am intersted to hear what those consultants advise. Stay tuned. Anyone planning to come this way who wants to drive me to a chemo in Gainesville on a Tuesday or a lab draw on Friday just call me with the date and I will put you on the calendar! Louisa
Friday, November 7, 2014
Surgery Oct 28 found recurrent ovarian cancer, but isloated apparently to one single spot. This is good news. I will have to go through chemo again but the prognosis for chemo leading to another long term remission is excellent! I am very pleased. My wonderful cousins Jane and Bruce Greyson came down from VA to bring me home, set me up here and take care of me, Balsam and the household for the first week, then headed back to VA today leaving a very well stocked fridge and freezer. This was much easier the second time around. I will know more after the follow up visit on Nov 12 but for now Balsam and I are content and well cared for at home.
Sunday, October 26, 2014
I am reactivating this blog because, as most of you know, I am going back to surgery on Tuesday Oct 27. I have been most fortunate and done unbelievably well for about 5 years, but I have a little cyst that has been slowly growing in my pelvic regions for about a year now. The only way to figure out if it amounts to some that sends me back to chemo or amounts to nothing is to go in and take it out and look. To be perfectly honest the idea of surgery is not nearly as exciting and fun the second time around. So that is what will happen. I know I have done a lousy and erratic job of updating my friends about this upcoming event, so this may take some of you by surprise. Thanks for supporting me anyway. This time the surgery will be at NE GA Medical Center in Gainesville, GA so I can stay with the same medical group that handled my chemo and has followed me along. A friend (Jessie) will take me up Monday night and stay until I am out from under anesthesia. Another friend who is retired (Jan) will come to visit on Wednesday. My cousins (Jane and Bruce) will arrive Thursday and bring me home and stay until I can operate on my own. So thanks for your concern - I am good and I have the support I need. Hope you are well. Louisa