The First Day of The Rest of My Life
The days before beginning Chemo were difficult days. The closer the time came, I started hearing a phrase in my mind, "This is the last day of the rest of your life." I think that captured the dread I was feeling as I prepared for this full entry into the journey.
When we were shown into the Chemo suite and put our bags down, Michael looked at me and said, "Every thing changes now."
I started the day with a blood draw in the lab, five vials to test everything possible. That went smooth. Then we met with the Nurse Navigator, Lisa, to decide how she would assist us during the day. She attended our meeting with Dr. Chiu, my oncologist. She took notes so she could translate later. I asked some more questions. One was what is the prognosis if I choose not to proceed with Chemo. Mainly I asked this because there are people who think I should not do Chemo. As I thought, I could be looking at about 6 months. So that is not a choice I would make! I asked about trying to go to the Mayo Clinic or M D Anderson etc. Again, I have people really pressing me to do this. He patiently explained about standards of care as apposed to trials etc. If you do trials, and they don't work, then you are back to standard of care, months to late. At my stage of cancer, trials are not a good option. But he did explain that as more results have come in on my biopsies, they now have the genetic info on my tumors and are able to better match care options. Turns out that a recent trial has now been approved for exactly my cancer and it increases life expectancy nicely. So he is recommending that. But for now we are going ahead with the current care plan (we have secured the drugs for this and it make take a while to get in the drugs for the new treatment). But as we are still waiting for my appointment with Rhuematology to determine my actual diagnosis in that regard, we have cut one of my drugs to a lower dose so as not to aggravate my Reynauds symptoms. Another of the drugs had to be skipped this go round on infusion because my protein levels were high in my urine. Other than a failed attempt to insert the iv into my arm, I got quite a bruise from that, the rest of the day went fine. I did become a bit of a baby and requested a single suite rather than a shared suite. When I explained that I might have difficulty listening to other folks success stories knowing that I am non curable, the nurse turned into an angle before my eyes and gave us a private room with a comfortable bed, doors that shut and she had maintenance come up and install curtains so that we would have privacy. I felt a bit bad as I think the bulk of the time and resources should be spent on those that are curable. But I was constantly reassured that it was ok. I was especially grateful as I knew that Michael was already quite stressed at the prospect of the infusion itself let alone the chaos of all the people and noise in the larger room. Raney, the Patient Navigator also visited with us. She took care of the paperwork for medical marijuana for me as well as a permit for a handicap parking pass. She also indicated that I could apply for expedited disability. I will be meeting with a financial adviser on staff there as well as a nutritionist. The staff at the UNM Cancer Center is fantastic.
I am not really feeling any different yet, neither better or worse. I was told I could feel an increase in fatigue levels on days 3 through 7. I am also taking chemo pills at home for two weeks, again a lesser dose than originally prescribed. I have anti nausea drugs as well. Taste buds are still in good shape. I did have difficulty sleeping last night but was warned that could happen as they gave me a steroid in the drip as well.
I plan to go to work today and again tomorrow and Saturday if I still feel well enough. Little knitting group on Sunday with my Knit Wits. Then a full day off on Monday to pamper and reassess. Let's hope I can do this!
Love and gratitude to each of you!
Pat
The days before beginning Chemo were difficult days. The closer the time came, I started hearing a phrase in my mind, "This is the last day of the rest of your life." I think that captured the dread I was feeling as I prepared for this full entry into the journey.
When we were shown into the Chemo suite and put our bags down, Michael looked at me and said, "Every thing changes now."
I started the day with a blood draw in the lab, five vials to test everything possible. That went smooth. Then we met with the Nurse Navigator, Lisa, to decide how she would assist us during the day. She attended our meeting with Dr. Chiu, my oncologist. She took notes so she could translate later. I asked some more questions. One was what is the prognosis if I choose not to proceed with Chemo. Mainly I asked this because there are people who think I should not do Chemo. As I thought, I could be looking at about 6 months. So that is not a choice I would make! I asked about trying to go to the Mayo Clinic or M D Anderson etc. Again, I have people really pressing me to do this. He patiently explained about standards of care as apposed to trials etc. If you do trials, and they don't work, then you are back to standard of care, months to late. At my stage of cancer, trials are not a good option. But he did explain that as more results have come in on my biopsies, they now have the genetic info on my tumors and are able to better match care options. Turns out that a recent trial has now been approved for exactly my cancer and it increases life expectancy nicely. So he is recommending that. But for now we are going ahead with the current care plan (we have secured the drugs for this and it make take a while to get in the drugs for the new treatment). But as we are still waiting for my appointment with Rhuematology to determine my actual diagnosis in that regard, we have cut one of my drugs to a lower dose so as not to aggravate my Reynauds symptoms. Another of the drugs had to be skipped this go round on infusion because my protein levels were high in my urine. Other than a failed attempt to insert the iv into my arm, I got quite a bruise from that, the rest of the day went fine. I did become a bit of a baby and requested a single suite rather than a shared suite. When I explained that I might have difficulty listening to other folks success stories knowing that I am non curable, the nurse turned into an angle before my eyes and gave us a private room with a comfortable bed, doors that shut and she had maintenance come up and install curtains so that we would have privacy. I felt a bit bad as I think the bulk of the time and resources should be spent on those that are curable. But I was constantly reassured that it was ok. I was especially grateful as I knew that Michael was already quite stressed at the prospect of the infusion itself let alone the chaos of all the people and noise in the larger room. Raney, the Patient Navigator also visited with us. She took care of the paperwork for medical marijuana for me as well as a permit for a handicap parking pass. She also indicated that I could apply for expedited disability. I will be meeting with a financial adviser on staff there as well as a nutritionist. The staff at the UNM Cancer Center is fantastic.
I am not really feeling any different yet, neither better or worse. I was told I could feel an increase in fatigue levels on days 3 through 7. I am also taking chemo pills at home for two weeks, again a lesser dose than originally prescribed. I have anti nausea drugs as well. Taste buds are still in good shape. I did have difficulty sleeping last night but was warned that could happen as they gave me a steroid in the drip as well.
I plan to go to work today and again tomorrow and Saturday if I still feel well enough. Little knitting group on Sunday with my Knit Wits. Then a full day off on Monday to pamper and reassess. Let's hope I can do this!
Love and gratitude to each of you!
Pat
Glad you were able to get the private room. You deserve the quieter space.
ReplyDeleteThank you dear, it was soothing for sure.
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