Ryan's twin brother, Derek, sent Katelyn the movie, The Wizard of Oz. We received it today. She knows the movie; it's the only full-length feature she's ever watched. One afternoon, during my hospital days, Ryan turned on a DVRed version. He needed some down time, and he received it. She sat on his lap and watched the entire movie. She cried from impatience during the commercials, even when Ryan triple fast-forwarded them.
Today I had my appointment with the head oncologist. While in the hospital, it had felt like the end goal was getting a high white blood cell count so I could go home. I just had to follow the yellow brick road, see the wizard, and I'd be whisked away. Although the doctors had mentioned the other phases of the treatment, I hadn't focused on them. Today, I was forced to do just that. We discussed Phases Two and Three. I start June 6th. The two weeks before then will be continued recovery from the treatments given to me in the hospital. The good news is that I am starting to feel better and getting back to normal in terms of energy. I can't wait to start working again.
The continued treatment schedule is more involved than I had let myself comprehend while in the hospital. To preserve my sanity, I hadn't let myself think about it. The second part of the discussion today centered on the tests for the presence of cancer throughout the treatment schedule and beyond. Today, two realities were forced upon me: 1) There are more bricks on the treatment road 2) I have to live with the fact that I have/had cancer. My life has changed. There will be the fear of bleeding/clotting that indicates Leukemia, and there will be the holding of breaths as we await the results of tests that tell me whether I am still in remission. At five years, I will be considered cured. My plan is to throw away any lingering fears that day (And clean out my closets. If I am strong enough to get over the fear of cancer, I am strong enough to get rid of that shirt from 2002.)
Despite my realizations, the meeting was very positive. In the first weeks of the disease, Dr. Goldberg, the head oncologist, had scared me about the dangers of that time period. He'd terrified me with a reference to a young woman who'd died. I had joked to the other oncologists that his name should be Dr. Gloomberg instead of Goldberg (in retrospect, maybe I shouldn't have joked about such an important person, but there were narcotics involved). Today, he said, "I heard about your nickname for me. Those things I said were to scare you to make sure you were being careful not to fall and doing everything we needed you to do during that critical time period. This is a happy meeting. You are in a good place right now. I am confident your test will come back next week showing your are in remission."
If Dr. Gloomberg is happy right now with my progress, that's how I will feel too.
The below is the basics of my treatment schedule. It assumes that my test comes back next week showing that the majority of the cancer-causing cells have been killed. The objective of the treatment is to wipe out any lingering cancer-causing cells that could cause a relapse.
- Arsenic - 5 weeks of 5 days a week, 2 weeks off, 5 weeks of 5 days a week, 2 weeks off. This is administered through IV; is outpatient; and takes about 45 minutes to receive the dose. There are some side effects the first week, but after that, I should feel fine. I asked the doctor if this is the chemical used to kill rats. His response: "No, but actually, you are already on the drug that's used for that- Warfarin." (blood thinner) This is useful information to have in case I ever do see a rat in our house.
My doctor mentioned that he's currently treating a golf pro in this stage. The pro gives lessons and gets his treatment at the end of the day. If a pro can give lessons, it should be a breeze for me, who has a desk job.
- Daunarubicin - 3 days in a row, 1 month off, another 3 days in a row, 1 month off. This is the chemotherapy. It is in the same family as the heavy chemo, Idarubicin, that I had in the hospital. My treatment may wind up being Idarubicin again because they are having issues with supply shortages. During these two months, I will be experiencing some side effects (like fatigue, hair loss), but they shouldn't be as severe as the first time since I will be starting off with healthy blood cells. The doctor described it as spreading weed killer on a healthy lawn to kill a few weeds. With the first round of chemo, the entire lawn was weeds. This is the two month time period during which my white blood cell counts will be low and there will be risk of infection.
- ATRA - 15 days every 3 months for 2 years. This is the maintenance phase, or Phase Three. ATRA is the second, lesser chemo drug I was on while in the hospital, and is taken in pill form. The first few days on it, until my body was acclimated to it, I had crushing headaches. The doctor said they've found this to be common with young women. Some countries, like Italy, give more doses of ATRA and have it last only one year. My doctor does it over two years because every time you restart it, the headaches comes back. There are a lot fewer restarts in his pattern than fitting it into a year with a week on/week off pattern. Aside from the occasional headaches, the two years on this drug won't affect my daily life.
Throughout these treatments, there will be additional testing to see if I am in remission.
Although I won't be considered "cured" until five years, it's the next 5-6 months, and then to a much lesser extent the following two years that will take some effort. Still, if only this were as easy as dumping a bucket of water on the Wicked Witch of the West...
The next two and a half years of treatment may not be as fast as a quick sploosh and "I'm melting, I'm melting," but the important point is that with my type of Leukemia, the doctors know how to kill it. For a disease so rare, it's amazing that they have been able to create a treatment plan with such a high success rate. I thank God the doctors have found their equivalent of a bucket of water.
Today I had my appointment with the head oncologist. While in the hospital, it had felt like the end goal was getting a high white blood cell count so I could go home. I just had to follow the yellow brick road, see the wizard, and I'd be whisked away. Although the doctors had mentioned the other phases of the treatment, I hadn't focused on them. Today, I was forced to do just that. We discussed Phases Two and Three. I start June 6th. The two weeks before then will be continued recovery from the treatments given to me in the hospital. The good news is that I am starting to feel better and getting back to normal in terms of energy. I can't wait to start working again.
The continued treatment schedule is more involved than I had let myself comprehend while in the hospital. To preserve my sanity, I hadn't let myself think about it. The second part of the discussion today centered on the tests for the presence of cancer throughout the treatment schedule and beyond. Today, two realities were forced upon me: 1) There are more bricks on the treatment road 2) I have to live with the fact that I have/had cancer. My life has changed. There will be the fear of bleeding/clotting that indicates Leukemia, and there will be the holding of breaths as we await the results of tests that tell me whether I am still in remission. At five years, I will be considered cured. My plan is to throw away any lingering fears that day (And clean out my closets. If I am strong enough to get over the fear of cancer, I am strong enough to get rid of that shirt from 2002.)
Despite my realizations, the meeting was very positive. In the first weeks of the disease, Dr. Goldberg, the head oncologist, had scared me about the dangers of that time period. He'd terrified me with a reference to a young woman who'd died. I had joked to the other oncologists that his name should be Dr. Gloomberg instead of Goldberg (in retrospect, maybe I shouldn't have joked about such an important person, but there were narcotics involved). Today, he said, "I heard about your nickname for me. Those things I said were to scare you to make sure you were being careful not to fall and doing everything we needed you to do during that critical time period. This is a happy meeting. You are in a good place right now. I am confident your test will come back next week showing your are in remission."
If Dr. Gloomberg is happy right now with my progress, that's how I will feel too.
The Remaining Bricks in My Road to Being Cured
- Recovery from Phase One, 2 more weeks. I am still weak and tired, but will continue to feel better. The drugs administered during my stay were very tough on my body, so not only are the bones and blood recovering, but my muscles are weak from lack of use.
- Arsenic - 5 weeks of 5 days a week, 2 weeks off, 5 weeks of 5 days a week, 2 weeks off. This is administered through IV; is outpatient; and takes about 45 minutes to receive the dose. There are some side effects the first week, but after that, I should feel fine. I asked the doctor if this is the chemical used to kill rats. His response: "No, but actually, you are already on the drug that's used for that- Warfarin." (blood thinner) This is useful information to have in case I ever do see a rat in our house.
My doctor mentioned that he's currently treating a golf pro in this stage. The pro gives lessons and gets his treatment at the end of the day. If a pro can give lessons, it should be a breeze for me, who has a desk job.
- Daunarubicin - 3 days in a row, 1 month off, another 3 days in a row, 1 month off. This is the chemotherapy. It is in the same family as the heavy chemo, Idarubicin, that I had in the hospital. My treatment may wind up being Idarubicin again because they are having issues with supply shortages. During these two months, I will be experiencing some side effects (like fatigue, hair loss), but they shouldn't be as severe as the first time since I will be starting off with healthy blood cells. The doctor described it as spreading weed killer on a healthy lawn to kill a few weeds. With the first round of chemo, the entire lawn was weeds. This is the two month time period during which my white blood cell counts will be low and there will be risk of infection.
- ATRA - 15 days every 3 months for 2 years. This is the maintenance phase, or Phase Three. ATRA is the second, lesser chemo drug I was on while in the hospital, and is taken in pill form. The first few days on it, until my body was acclimated to it, I had crushing headaches. The doctor said they've found this to be common with young women. Some countries, like Italy, give more doses of ATRA and have it last only one year. My doctor does it over two years because every time you restart it, the headaches comes back. There are a lot fewer restarts in his pattern than fitting it into a year with a week on/week off pattern. Aside from the occasional headaches, the two years on this drug won't affect my daily life.
Throughout these treatments, there will be additional testing to see if I am in remission.
Although I won't be considered "cured" until five years, it's the next 5-6 months, and then to a much lesser extent the following two years that will take some effort. Still, if only this were as easy as dumping a bucket of water on the Wicked Witch of the West...
The next two and a half years of treatment may not be as fast as a quick sploosh and "I'm melting, I'm melting," but the important point is that with my type of Leukemia, the doctors know how to kill it. For a disease so rare, it's amazing that they have been able to create a treatment plan with such a high success rate. I thank God the doctors have found their equivalent of a bucket of water.
Hey Sweetie,
ReplyDeleteI haven't posted for awhile, though I do read your entries faithfully. I just wanted to plug your mom's (and dad's, and my) Alma Mater: Warfarin was "discovered" at UW!! I'm so glad you're home, and I know you will just continue to get stronger. I will see you sometime this summer!
Much love,
Aunt Lynn
When UW discovered Warfarin, were they looking for an effective rat poison or a blood thinner? It is good to be home
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