My Turn for an Oncology Visit
For two years, we have been focused on Sheila's cancer and I sort of pushed any thoughts of my own health to the back of my mind. Of course, when problems arose, I visited doctors and did what needed to be done to stabilize my health again but I definitely have not been pro-active in pursuing my own healthcare problems while we were handling Sheila's cancer. There was only so much we were able to handle and, to be honest, we're both pretty sick and tired of spending so much time in hospitals but now it is my turn.
So, yesterday, we headed up to the University of Vermont Medical Center and spent the entire afternoon at the hospital... again in the Oncology department but visiting a new doctor. My illness is classified as a myeloproliferative disorder so oncology/hematology is the place to be at this point.
Unfortunately, since we were back in oncology, we didn't even get a change in scenery! Actually, what was really weird was that when we left our examining room to head to the Lab for a blood workup, we checked out and then stepped out the closest exit door to the waiting room and we found ourselves in the Breast Care Center where we spent all that time for Sheila. It felt like we were in an episode of the old, eerie Twilight Zone or trapped in some sort of nightmare where, no matter where we go, we step out a door and end up at the Breast Care Center.
It was a long appointment and it was a productive appointment, I suppose. With all the focus on Sheila's health in recent years, I have sort of forgotten about the severity of my own health. The oncologist made it crystal clear that my case is "severe" and actually used that phrase, "severe case". Whenever we leave an appointment for either of us, we discuss the things that really stood out and that was one of the phrases that really stood out yesterday on our drive back home. Hearing the phrase "severe case" was a cold reminder of where we left off with my health a couple of years ago.
When I explained to the oncologist how my last doctor pulled me off ALL my medications for a colonoscopy last September, she said, "You CAN'T be off your medications!" That point was clearly proven when my health crashed into anaphylaxis the morning of my scheduled colonoscopy but it was very comforting to hear that she agreed. Better yet, this was a sign that I would not be asked to stop my medications for anything while under her care. That is a much needed step in the right direction after the last doctor I saw.
When we were discussing my list of medications which keep my body reasonably stable, she pointed out that she had never seen one patient on so many medications and at such high doses... some quadruple the maximum recommended doses... but she was happy to hear that it seems to be working fairly well for me. Sheila and I discussed that perhaps after seeing my medication regimen, that this might help some other patients who could benefit from higher doses of these medications. So that is good.
The oncologist reminded me of the dangers associated with anesthesia and surgery with my health and she reminded us that this is very important to understand because most hospitals do not understand this fact and often don't heed any precautionary advice about patients with my rare illness. She made it clear that we must be very pro-active in this area because it is such a serious and even grave matter.
We discussed that there isn't much else that can be done at this point in time other than continue to manage my symptoms. There is no cure for this illness at the moment. There aren't even any hopeful new drugs on the horizon. Of course, both Sheila and I are also aware that any drugs being tested today, even if successful, won't be on the market for at least another ten years so we are coming from a realistic point of view on this point rather than wasting time and energy on something that would be nothing but false hope. We both understand that what matters is how I live my life today... sticking with my medications, sticking to my restricted diet, avoiding known triggers that lead to anaphylaxis, and take one day at a time. Oh... and I should continue to do what I can, while I can, naturally (I've always lived my life with the goal of doing what I can, while I can, so that is nothing new to me. As a result, I have no regrets about procrastinating about things I could have or should have done when I was younger and healthier.)
I'm being scheduled for more imaging as well as a special type of bone scan. I already had a baseline bone scan about 15 years ago so this new scan will be compared to the baseline scan. This is related to my daily horrendously painful bone and joint pain. My bone marrow biopsy results have been reviewed. After the appointment, we did a bunch of bloodwork to check for a worsening of my illness. And, we added more vitamin D and more calcium to my daily vitamins. I don't expect any drastic new findings in any of these tests though.
Tomorrow, we head back to the hospital for some followup imaging for Sheila's cancer. Then next week we see one of her doctors in oncology for more imaging and to discuss her results. I guess we are at a point in our treatment(s) where we can take turns rather than focus on just one of us full time... Yesterday was my turn.
Unfortunately, since we were back in oncology, we didn't even get a change in scenery! Actually, what was really weird was that when we left our examining room to head to the Lab for a blood workup, we checked out and then stepped out the closest exit door to the waiting room and we found ourselves in the Breast Care Center where we spent all that time for Sheila. It felt like we were in an episode of the old, eerie Twilight Zone or trapped in some sort of nightmare where, no matter where we go, we step out a door and end up at the Breast Care Center.
It was a long appointment and it was a productive appointment, I suppose. With all the focus on Sheila's health in recent years, I have sort of forgotten about the severity of my own health. The oncologist made it crystal clear that my case is "severe" and actually used that phrase, "severe case". Whenever we leave an appointment for either of us, we discuss the things that really stood out and that was one of the phrases that really stood out yesterday on our drive back home. Hearing the phrase "severe case" was a cold reminder of where we left off with my health a couple of years ago.
When I explained to the oncologist how my last doctor pulled me off ALL my medications for a colonoscopy last September, she said, "You CAN'T be off your medications!" That point was clearly proven when my health crashed into anaphylaxis the morning of my scheduled colonoscopy but it was very comforting to hear that she agreed. Better yet, this was a sign that I would not be asked to stop my medications for anything while under her care. That is a much needed step in the right direction after the last doctor I saw.
When we were discussing my list of medications which keep my body reasonably stable, she pointed out that she had never seen one patient on so many medications and at such high doses... some quadruple the maximum recommended doses... but she was happy to hear that it seems to be working fairly well for me. Sheila and I discussed that perhaps after seeing my medication regimen, that this might help some other patients who could benefit from higher doses of these medications. So that is good.
We discussed that there isn't much else that can be done at this point in time other than continue to manage my symptoms. There is no cure for this illness at the moment. There aren't even any hopeful new drugs on the horizon. Of course, both Sheila and I are also aware that any drugs being tested today, even if successful, won't be on the market for at least another ten years so we are coming from a realistic point of view on this point rather than wasting time and energy on something that would be nothing but false hope. We both understand that what matters is how I live my life today... sticking with my medications, sticking to my restricted diet, avoiding known triggers that lead to anaphylaxis, and take one day at a time. Oh... and I should continue to do what I can, while I can, naturally (I've always lived my life with the goal of doing what I can, while I can, so that is nothing new to me. As a result, I have no regrets about procrastinating about things I could have or should have done when I was younger and healthier.)
I'm being scheduled for more imaging as well as a special type of bone scan. I already had a baseline bone scan about 15 years ago so this new scan will be compared to the baseline scan. This is related to my daily horrendously painful bone and joint pain. My bone marrow biopsy results have been reviewed. After the appointment, we did a bunch of bloodwork to check for a worsening of my illness. And, we added more vitamin D and more calcium to my daily vitamins. I don't expect any drastic new findings in any of these tests though.
Tomorrow, we head back to the hospital for some followup imaging for Sheila's cancer. Then next week we see one of her doctors in oncology for more imaging and to discuss her results. I guess we are at a point in our treatment(s) where we can take turns rather than focus on just one of us full time... Yesterday was my turn.
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