The after effects of chemo

Saturday, February 20, 2010

I have just listened to my favorite radio show, "Wait, wait, don't tell me". I have enjoyed the radio since I was very young. I listened to it when I was kept home from school because of illnesses (I missed half my freshman year of high school because of chronic bronchitis). My mom taught me Latin and I still remember the language, using it to decode words. When I got a really bad case of poison ivy on my hands and face (I had been watching tree guys cut poison ivy from a tree and chipping it) I could only do the radio dial with my foot and I succeeded! I had on flannel lined jeans with a flannel shirt(how L.L. Bean of me even then) so that's why it only affected my hands and face. This happened at our little country cabin two hours north of NYC where we went from Memorial Day until Labor Day. My dad came up week-ends, our phone was a party line, our post office box a mile away, and we went into Washingtonville once a week to shop for groceries. The cabin was on a lake so my sisters and I swam and boated and played. I don't know what we did all those hours, but Beaver Dam Lake is a very fond memory for me.We had no TV, but we had a great radio that brought in stations from all over the world and we labored over finding news from around the world in the evenings.

What does that have to do with the cancer saga? I guess thinking about how important the radio is to me has not changed. It still gives me a lot of pleasure. I listen to KQED and KWMR only, mostly because those are the only two stations I can receive in Haggerty Gulch (no cell service at our house though I have offered to put up a redwood tree facsimile cell tower in the yard). I am enthusiastic about streaming and going to archives for shows I have missed.

My hair is growing in and it is at least three different colors, ranging from white to black. My sister said I looked "Butch" twice and other people have said it looks like a real "do". It is extremely soft and I encourage people to stroke my head if they want. Men barely touch and do so quickly. Women are more open to the softness factor. "It feels like baby hair" is the most frequent comment. Sometimes I just rub my hand over my head because it feels so good. Sort of like a child sucking her thumb to calm down. Rigdon sent out the final e-mail to Trish's pals with a side profile of my face and head. I have had positive comments about it though the photo looks stark to me. I wanted one that didn't show me smiling because this journey, battle, whatever one calls it, has not been something to smile about and all my other photos were of a smiling crazy woman. Didn't I know I was going through hell?

All those who have known about the cancer and my trials have been wonderful; bringing meals, flowers, sending cards, and gifts. A woman who lives on Cape Cod I have met only once sent me a framed oil painting of beautiful flowers she had painted. I reread all my get well cards last night and though I hate the word, I was touched, I really was. Some folks sent more than one card. The cards mean so much to me. I used to think get well cards were, what shall I say?, stupid, but they aren't. I will try to send cards to those friends who are ailing.

I know I have gotten confused about gifts, not written thank you notes and feel guilty as hell about it, but I don't know how to rectify it except be more mindful in the future. I try to excuse myself by saying I have chemo brain but it is more than that. I haven't been attentive to all the kindnesses by offering proper, sincere written thanks.

News on my health and state of mind: I still need a lot of rest and no stress. We have just welcomed three sets of guests over the last three weeks, had a luncheon, a roundtable discussion, and two friends over for dinner. Since then, I have come down with a few of the "itises", conjunctivitis, laryngitis, and bronchitis. I have been grounded until I see the doctor again in a few days and I am glad to have the restriction. I feel lousy but have used some of my time to start to organize deductions (donations, business, and medical) for our taxes. I can't wait to hear my dear accountant on the phone, "Trish, I can't believe it! I usually have to beg to get your information. Remember last year when you had no more extensions and I offered to come up from San Jose to help you get your financials in order?" Eventually she didn't have to come and I just made the last deadline for 2008 extensions that one can get. Since I went through a lot of testing because of the cancer before I got on Medicare on May 1st, I have a lot of prescription deductions and some of the most costly were never covered. The infectious disease Honcha at Stanford, Dr. Ho, prescribed them and I didn't understand how to remedy the lack of coverage. Of course, the insurance would have paid if I had stayed in the hospital for another week of I.V. infusion for the infection. ARRRGGHHH I have probably ranted about this before. I actually haven't ever reread my blogs. I will someday, but right now it is all too raw.

Back to present health: In November, I sadly gave my chickens to a family that has a great barnyard with a miniature horse, two goats, a duck, and 25-30 chickens within a fence on Mesa Road in Point Reyes. I have always admired their animals on my walks so when I realized I couldn't care for them any more (in the style I felt they were due) I called Ross in November and he was happy to take them. I have visited them a few times and brought them worms from our worm boxes and when I called out, my chickens came running, not the Ross's, so they indeed remembered me. My back was really bothering me so I decided the attention to my chickens was exacerbating the back pain, plus all those hours spent in hospital beds, including one mattress that wasn't blown up properly, though I didn't realize it until the last day when I checked another hospital bed.

I have spent a lot of time at the Physical Therapist and have started private Pilates lessons. Pilates seems to be the answer as long as I keep up my practice at home. The darling teacher said to me, "You know I have had many reasons for people wanting to do Pilates: getting into a wedding dress, trip to Hawaii, mother of the bride, but I have never had one with the goal of getting chickens." I have ordered 4 pullets for delivery the end of April, and I plan to be fit and ready for them. Pullets are adolescent chickens close to laying age. I will be unable to choose the breed but I think they will be Rhode Island Reds which are very good layers. I love to share my eggs so I hope 4 will produce enough for my friends and us, instead of the 6 chickens I had before,

There are effects from chemotherapy I must have missed in all my cancer reading. I am plagued with neuropathy (no feeling) in my right foot. I can't go barefoot any more and I have to wear shoes with ties or I am in severe pain when I walk. I don't know how long the neuropathy lasts, but my foot is getting quite contorted with toes falling on top of toes and I yearn for the old days of loving walking as much as I did.

Another effect is all my nails broke off very low on my finger, lower even than when I used to bite them. The toe nails are almost history except for the big toe nails and they are pretty sketchy. I miss going to have a pedicure and feeling so elegant in sandals or running barefoot around the house. NO MORE

Another effect is either from the chemo or the Tamoxifen (I will deal with that in the next paragraph). I have a new, very soft roll of 'avoir du poids' which starts at my waist and continues up for a few inches. It is very soft and new to my body even at my heaviest weight. My sister suggested a body suit (looks like a bathing suit, but very tight around the middle) and it does take care of the roll. However, it also seems to flatten my boobettes and since they are so small anyway I use the suit less than I thought would. Plus going to the bathroom is a challenge.

The next observation is about Tamoxifen, an estrogen blocker drug. Blocking the estrogen means I have another menopause which means more hot flashes. And these do not subside or get less frequent nor are they subtle. I suffer from them at least 5 times a day and have to shower after a couple of them. The good news is I don't have to take Tamoxifen for the rest of my life, the bad news is I have to take it for 5 years, so I have a lot to look forward to in the "dripping sweat feeling like I want to explode" department.

re: radiation

Though I was quite seduced by the big eyes and soft voice of the radiation oncologist for an hour, she could not convince me to have radiation. The plastics guy said I may have to have the right boobette replaced if I do, I am afraid of radiation having grown up in the 50's, and I felt driving over the hill (West Marin term for going to anyplace other than Point Reyes) and back 50 times in a row was more of a danger to me. The statistics were showing a 5%-10% increase in my having a recurrence of breast cancer in the next five years without radiation. That wasn't enough to convince me. I had made my decision long before the report of the botched radiation treatments appeared in the NY Times.

So, here I sit, taking Tamoxifen, getting ready for my chickens, watching the beautiful birds at the feeders, enjoying the many blooming daffodils in our yard, the spring blooming plants like plum trees, ribes, hellebore and more. Bubba is always with me except when he is with Rigdon, we have fires every night, I am finally enjoying my Kindle and as my sister, Prudence, always says "Life goes on."