visitors, palliative care, and Cinder
This update is hard. I have a cold. My back hurts. And I think I got good news today, but it felt devastating. I know good things have been happening, but I am having a really tough time.
I am trying to "focus on the positive" as many--especially nurses who don't know me particularly well-- so kindly remind me to do. ("It helps! It's all about your mindset!" Actually lady, it helps YOU have an easier day by not seeing my difficult and complicated emotions. But, thanks, I hadn't thought about that idea. I don't know anything about emotions.)
In true CBT style, I am fighting my funk by trying to have accurate balanced thoughts rather than jumping to super scary conclusions, or alternatively deluding myself with unrealistic pollyanna-like thoughts. It's just hard when there are so many tough realities.
So, the lovely news first: we have had many visitors lately. I am lucky to feel loved and care-for by people who are willing to brave I-95 and the Garden State Parkway with toddlers in tow. The Wisemans celebrated Kenny's birthday with us up in NY with a LEGO themed adventure! We went to the LEGO discovery center, had a delightful dinner, and enjoyed playing with LEGO as a family. Kenny is growing so much, and it is wonderful to see!
The BuckWoods came up this past weekend. Sarah joined me for my palliative care appointment (more on that gem in a moment), and then she made us a delicious dinner while Isaac, Harlan, Chris and I went to the Sting (a version of Hackley's Homecoming). We watched various sports and listened to Harlan clap and say "ball." As usual, a few Hackley parents got confused/excited seeing Chris and me with a baby and we had to let them know Harlan was a friend. The next day, Sophia and Adam joined us with Luca and Alice. It was a rainy day, so we mostly played inside and read books. Lucas was his delightfully snuggly self with me which is always a treat.
Sarah and Sophia both accompanied me to the most thorough palliative care appointment ever last Friday 1/24/20. We had the pleasure of having the appointment fall on the new fellow's first day. This meant that I got a long interview from an over-eager new fellow who tried very hard to be super friendly. Then, when my doctor came in, he got to show off for the fellow. He asked a wide range of questions including "what brings you joy?" and "if you aren't very religious, how do you make meaning in your life?" We were trying to figure out if the long interview was to figure out if I am going to abuse drugs. Clearly they decided I was ok because I was told I could have a prescription for various pain meds, patches, etc. including medical marijuana. (I declined the medical marijuana for now. I feel like my straight-laced self is having a hard time incorporating that.) I will wait and see if the new pain patches work-- which I don't know yet because, of course, insurance denied them. [insert eye roll emoji here]
Today (1/28/20), I had another infusion and Dr. Drake appointment. Chris came with me to hear feedback from my latest MRI. The good news is that the lesion is very stable. There have been no notable changes. Dr. Drake's clinical recommendation is to stay the course with the current treatment. Switching poses a lot of risks including that going back to my current treatment if the other treatment does not work, may not be successful.
Chris asked about the radiation, and it sounds like the radiation was successful; however, they don't see many changes. "Successful" doesn't mean that it got everything, and there is no way to really know. This means that I really need to stay on some kind of treatment.
Drake discussed that in order to see if the treatment is working sometimes they stop treatment to see if anything grows. He recommended against that, especially at this stage. In part, because at some point (1-2 years) this treatment will likely stop working.
The take-home message was that I am going to be on some kind of treatment indefinitely. There may be a discussion of decreasing it, or only doing one kind of immunotherapy (I am doing two right now), but that I will likely need to be on something.
This message felt different from the messages we received before. Before, I thought that if the radiation and treatment worked, then I would be on the treatment for a year, then off it for a year, then I could go back to normal and have the baby I've always wanted.
Chris and I found a quiet corner in the infusion center, and I cried. I am scared about what will happen when the treatment stops working in a year or two. I am sad that my future is so uncertain. I really, really want to have a family. This is hard.
Chris and I agreed to not discuss our plans to have a family until this summer. I am just not ready to face the reality of our options right now. And, the truth is, everything seems to change with each new appointment. So, we've decided to wait until I've been doing this treatment for a year before we really step back and evaluate what we want our lives will be like going forward.
For the infusion, my IV woes continued. I tried to set myself up for success and offered the vein that has been the most successful lately. As it turns out, that vein is over it. While it "worked" it was super painful and felt wrong. She tried again in another part of my arm, but that one went very wrong! A new nurse came and got the IV placed on the other arm. The infusion was uneventful and we went home where I went to sleep exhausted from this cold, the infusion, and my feelings.
All my sad feelings are not just about me. We have some very sad news about our furriest family member. Cinder has a tumor near his colon which is most likely lymphoma. We consulted a vet that does oncology, but ultimately decided that we want him to be comfortable and happy, rather than undergo treatment which would likely only extend his life for a few months. Chris and I are heartbroken. Cinder is attributed to "saving my life" the first time I got cancer (it has to do with allergy shots--it's a good story). He is also the little furball who helped lift Chris's spirits, and kept him company when he moved to Georgia. Cinder and I have always had a funny relationship, but I do love him. We hope to have many more good days with him.
There are good things ahead as well. I am looking forward to a quick last-minute visit from Uncle Ian tomorrow! Chris has boarding duty, so we are debating if we should have dinner together in the dining hall, or if I will take him out for something a little nicer.
I am trying to "focus on the positive" as many--especially nurses who don't know me particularly well-- so kindly remind me to do. ("It helps! It's all about your mindset!" Actually lady, it helps YOU have an easier day by not seeing my difficult and complicated emotions. But, thanks, I hadn't thought about that idea. I don't know anything about emotions.)
In true CBT style, I am fighting my funk by trying to have accurate balanced thoughts rather than jumping to super scary conclusions, or alternatively deluding myself with unrealistic pollyanna-like thoughts. It's just hard when there are so many tough realities.
So, the lovely news first: we have had many visitors lately. I am lucky to feel loved and care-for by people who are willing to brave I-95 and the Garden State Parkway with toddlers in tow. The Wisemans celebrated Kenny's birthday with us up in NY with a LEGO themed adventure! We went to the LEGO discovery center, had a delightful dinner, and enjoyed playing with LEGO as a family. Kenny is growing so much, and it is wonderful to see!
The BuckWoods came up this past weekend. Sarah joined me for my palliative care appointment (more on that gem in a moment), and then she made us a delicious dinner while Isaac, Harlan, Chris and I went to the Sting (a version of Hackley's Homecoming). We watched various sports and listened to Harlan clap and say "ball." As usual, a few Hackley parents got confused/excited seeing Chris and me with a baby and we had to let them know Harlan was a friend. The next day, Sophia and Adam joined us with Luca and Alice. It was a rainy day, so we mostly played inside and read books. Lucas was his delightfully snuggly self with me which is always a treat.
Sarah and Sophia both accompanied me to the most thorough palliative care appointment ever last Friday 1/24/20. We had the pleasure of having the appointment fall on the new fellow's first day. This meant that I got a long interview from an over-eager new fellow who tried very hard to be super friendly. Then, when my doctor came in, he got to show off for the fellow. He asked a wide range of questions including "what brings you joy?" and "if you aren't very religious, how do you make meaning in your life?" We were trying to figure out if the long interview was to figure out if I am going to abuse drugs. Clearly they decided I was ok because I was told I could have a prescription for various pain meds, patches, etc. including medical marijuana. (I declined the medical marijuana for now. I feel like my straight-laced self is having a hard time incorporating that.) I will wait and see if the new pain patches work-- which I don't know yet because, of course, insurance denied them. [insert eye roll emoji here]
Today (1/28/20), I had another infusion and Dr. Drake appointment. Chris came with me to hear feedback from my latest MRI. The good news is that the lesion is very stable. There have been no notable changes. Dr. Drake's clinical recommendation is to stay the course with the current treatment. Switching poses a lot of risks including that going back to my current treatment if the other treatment does not work, may not be successful.
Chris asked about the radiation, and it sounds like the radiation was successful; however, they don't see many changes. "Successful" doesn't mean that it got everything, and there is no way to really know. This means that I really need to stay on some kind of treatment.
Drake discussed that in order to see if the treatment is working sometimes they stop treatment to see if anything grows. He recommended against that, especially at this stage. In part, because at some point (1-2 years) this treatment will likely stop working.
The take-home message was that I am going to be on some kind of treatment indefinitely. There may be a discussion of decreasing it, or only doing one kind of immunotherapy (I am doing two right now), but that I will likely need to be on something.
This message felt different from the messages we received before. Before, I thought that if the radiation and treatment worked, then I would be on the treatment for a year, then off it for a year, then I could go back to normal and have the baby I've always wanted.
Chris and I found a quiet corner in the infusion center, and I cried. I am scared about what will happen when the treatment stops working in a year or two. I am sad that my future is so uncertain. I really, really want to have a family. This is hard.
Chris and I agreed to not discuss our plans to have a family until this summer. I am just not ready to face the reality of our options right now. And, the truth is, everything seems to change with each new appointment. So, we've decided to wait until I've been doing this treatment for a year before we really step back and evaluate what we want our lives will be like going forward.
For the infusion, my IV woes continued. I tried to set myself up for success and offered the vein that has been the most successful lately. As it turns out, that vein is over it. While it "worked" it was super painful and felt wrong. She tried again in another part of my arm, but that one went very wrong! A new nurse came and got the IV placed on the other arm. The infusion was uneventful and we went home where I went to sleep exhausted from this cold, the infusion, and my feelings.
All my sad feelings are not just about me. We have some very sad news about our furriest family member. Cinder has a tumor near his colon which is most likely lymphoma. We consulted a vet that does oncology, but ultimately decided that we want him to be comfortable and happy, rather than undergo treatment which would likely only extend his life for a few months. Chris and I are heartbroken. Cinder is attributed to "saving my life" the first time I got cancer (it has to do with allergy shots--it's a good story). He is also the little furball who helped lift Chris's spirits, and kept him company when he moved to Georgia. Cinder and I have always had a funny relationship, but I do love him. We hope to have many more good days with him.
There are good things ahead as well. I am looking forward to a quick last-minute visit from Uncle Ian tomorrow! Chris has boarding duty, so we are debating if we should have dinner together in the dining hall, or if I will take him out for something a little nicer.
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