Feb 09 Update From Patient Siggy
Dear Friends,
Since it took me two months to answer the emails from the last update, I thought I would take my time writing another one. Looking back, I realize I was spoiled having little reaction or side effects to round one and two of chemo. This time, round three, is different. I've had fevers, enough to be in the hospital for three days in New York (reported in the last update) and another three days in Nashville. I have been so anemic, it has been hard to respond to emails or continue to write but finally I am much better. When I was in the hospital in Nashville, right before chemo two, they gave me two units of red blood. What a difference. I felt as if I could play a set of tennis. I walked from one end of Green Hills Mall to the other with Mary Jane and did errands in several stores. I had not been in a store since we came back from Japan at the end of October. OK, maybe on a good day, I was in and out of the grocery a few times for a bottle of milk and some Ruby Red grapefruit. I devour tomato soup, the best from Food and Company, "Chunky Basil Tomato soup". I eat it three times a week. The acid should bother me but it doesn't. Maybe it's offset by the grapefruit.
Since my red blood infusion, I am a new person and finish emails down to the bottom of the list and have been working on my new book. I don't know how I would survive without the writing, both emails and the book, and without the support from all of you.
The emails I receive each day add energy to my being and keep me positively focused. Here is an example from a new friend of a friend named Stacy.
Thank-you for the e-mail. It certainly put a different perspective on my day. You are being very brave and so gracious to share your walk with so many. Your honesty touches me and I am thankful for people like you who make themselves vulnerable in order that others can learn and grow and invest. I will continue to pray for you... I hope at this very moment you are being blessed and loved and healed.
Henri Nouwen wrote that one of the most important things for a human being is "to be known". Writing to all of you and being able to share my story allows me "to be known" and sustains me through the rough patches. I love opening your messages, even when I can not reply as quickly as I would like. There seem to be more rough patches on this round and I am overdosing on couch potato days.
The first round of chemo this time went fine. It was three days at the beginning if January, a long one on Wednesday, about eight hours and then two shorter days of four hours. The meds are much stronger than any of my other treatments and are tough. It is called "ICE + R" (always the rituxan).
I was really nauseous for the first time. Stupid me, I was sick for the first few days....and nights and then it seemed to get better so I left the nausea medicine in Nashville the Sunday after chemo when Nicky and I decided to go to Ponte Vedra for a week of quiet. I was so weak she needed to wheel me in a chair but it was worth it to get out of Nashville for a week of R and R. The first day we stayed in our PJs and watched the Collin Firth version of Pride and Prejudice, from 10:30 until 3:00. I couldn't take my eyes off Collin's arrogant face, such a haughty and utterly irresistible Mr. Darcy.
But the next day the nausea came back. It was just like being pregnant, with that constant sense of wanting to be sick but not being able to and a terrible lump in the middle of my throat. Nasty. How could I have been so stupid as to leave the nausea meds at home? I called Dr. Greer's Physicians Assistant, Meera, and had her call a new prescription into the Walgreens in Ponte Vedra and Nicky went to the drive through window to pick it up. "That will be six hundred and seventy dollars," said the clerk without batting an eye. Do you think there are people who actually pay that? Nicky called and we figured Jim would be down in three days with my original prescription and we would only need six pills so she paid $150 for six pills. We figured out the insurance had already paid for this months allotment of nausea pills and were not going to give me any more except for the outrageous, full price of highway robbery. What a mess. I thought of those people who would just go without the medicine if their insurance didn't cover it. But I needed those six pills and downed them each day with no remorse. But the insurance companies and pharmaceutical companies and a few other banks and people on Wall Street with big bonuses after bailouts should be shot. And I guess I should be shot for downing pills at $25 bucks per pill.
By the following Sunday, when Jim and Nicky and I went home, I was able to walk to the plane and feel renewed after the week of rest.
And then several weeks passed and I knew I would be loosing my hair any day. I started to pull on it and check the status. By week two and a half, some was in my hand. I didn't touch it for several days but it was inevitable. Loosing hair was harder the second time. Maybe the first time I was just so numb but now I knew what was going to happen. A few nights later I fixed a hefty Jack Daniel's and water and sat in the comfy club chair in our living room and pulled tufts out and started a little pile on the end table. I read Kelly Corrigan's The Middle Place and sipped and pulled. Then I wore a baseball cap showing the little bit of fringe left around the sides. The next week I was in the Vandy hospital and a sweet lady named Abby shaved off the rest. I held on to that last bit al as long as possible. Finito. Bald. Once it's all gone, it's not so bad.
I was planning to go back to Florida. I had a house guest for a few days from Barcelona, a very old friend. She was leaving on Monday at 10 and I was going back to PV around one. At 9:30 I was in the kitchen and felt so chilled, I turned on the oven. I felt fine except for this chill. I remembered a chill the last time I was in Florida and I had had a temperature so I snuck into the bedroom and stuck the thermometer in my mouth. My temperature was 101 and it was only 9:30 in the morning. What was going on? Thank God I called Jim and talked about not flying with a 101 temperature. I took some Tylenol and drove my friend to the airport. Surely by the afternoon I would be fine. I took my temperature several times. By 4 it was 102. I called Dr. Greer's office and they said to go to the emergency room. Jim came to get me and by the time we arrived, at 5:15, it was 104.6, caused by a kidney infection. I was in Vanderbilt for three days with lots of antibiotics dripping but went home with two new units of red blood and a bald head.
With all these distractions, another month goes by and I am ready for chemo two. The bad news is they can't finish the chemo this time because my white blood count was too low. I have never paid attention to my blood counts as they have never been an issue for me. First my red blood is low and now I am having problems with the white blood count. I know many other cancer patients have had to put off chemo many times because of low blood counts so I am spoiled never to have had to worry about this before. But here I am now, having to wait until next month? I guess this is what will happen but one of the hardest parts of the drill is not really knowing what will be next. I am not sure if they will try another round of this "ICE + R" chemo or try something else. I am scheduled for more scans at the end of the month and I am told they will go ahead with these. But even if the cancer is gone from the radar screen, would one and a half rounds of chemo be enough? And then there is the question, enough for what?
The big question, the giraffe in the living room, is asking if we go for more chemo and continue to "manage" the disease or do we go for broke and try a transplant? I climb over this big spotted animal every time I go from the bedroom, through the living room and into the kitchen. And it is tiring climbing back and forth over that big lump. And it's hard to get him to stay in a sitting position. He's going to ruin my robin's eggs blue ceiling. He clashes with the colors in my chintz curtains and I'm afraid he'll make a mess of my oriental serape, which is very old. The doc tells me not to think about this right now, not to worry about this right now and just get through the chemo. And Jim doesn't want to talk about it right now either. How can you not think about it and not talk about the possibility of your life being on hold for six months and the possible consequences? I just want the stem cell transplant on the table for discussion. Jim thinks if it is on the table for discussion, it will happen and he is not sure it should. Neither is Dr. Greer who says, "this is very controversial and could be life threatening." But then that is his job, talking about all of the possibilities and consequences of illness. I don't think this means he is ruling out the possibility.
But, guess what? The transplant could cure me of the disease. Isn't that worth considering the risk? How many times can I go through another round of chemo? Three, maybe five? And if I wait and am too sick I can't have a transplant or it will be much riskier.
At least, after this half round of chemo, I am not sick as a dog. My white blood level makes me VERY susceptible to infection. So I must stay away from any group of children, including my granddaughter's birthday party on Saturday. Bummer. I have also missed the whole Antiques and Garden Show for the first time. At least I don't ever have to be alone. I am here with all of you and writing and will soon send this out and soon hear from many of you. How lucky is that?
Ironically, it is this stupid illness that brings me close to all of you and the writing. Thanks for keeping me grounded and in your prayer circles and in your hearts.
Big Hugs, Sigourney
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