First visit with the transplant team!
Well the best news is that after 187 days on chemo Dr. Jones told Karl to stop taking it as of today. And he gets at least 2 weeks chemo free. But I'm getting ahead of myself.
Karl's appointment was for 1pm, so we left Eastport at 9am. For those of you not familiar with the geography of the island of Newfoundland, it takes 3 hours to drive from Eastport to the capital city of St. John's, and we only have two seasons, winter and construction, so you have to give yourself extra time.
Our understanding was that we had an appointment, so we assumed that we'd be out of the hospital by 2ish. We were wrong. We were led into an exam room right on time at 1, so at that point all looked great from our point of view. Then we waited. And waited some more. It was the theme of the afternoon. Nurse practitioner Charlene came in at 1:25. Her first information was that we would be meeting with several people, so the appointment would be a while. It's hard to define a while, but in this case it meant 3 1/2 hours. While I'm being a little sarcastic now because my latest memory is of the drive through the park in the rain after dark, we weren't that bothered at the time because we were so grateful to be at the stem cell stage after 187 days on chemo.
Like most of the medical personnel we have encountered, Charlene was very nice. She gathered Karl's personal history. (On a side note, what do they do with the pages of biography that they write when you meet each new person? It's a good thing files are mostly electronic because they'd have book size files of the same biography alone!) Then she explained the stem cell process and gave us time to ask questions. We'd done a lot of reading and asked others ahead of us, so our questions were mostly limited to the logistics concerning the when for Karl. Then she did a physical exam. Like always since the pneumonia cleared up, Karl's vitals were in the normal range. Charlene said text book normal. Then she left telling us that Karl's transplant doctor would be Dr. Jones, and we would be in next. Back to waiting.
Dr. Jones started by explaining the process in more detail, including telling us the drugs they would be using. I'll get to that as it happens. He also went into detail about the down side, which is a 2-3% mortality rate, a 5% rate of causing new cancers, especially skin cancer and leukaemia, problems with mucus membranes in your body, especially the mouth but in rarer cases in internal organs, and other common chemo effects like risk of infection, nausea, and diarrhea. Again we had read all that, so at the time we just let it all pass over with no comment. But Karl pointed out after Dr. Jones left that the mortality rate ranges from around 1/50 to 1/33, which is really quite high. If you got on an airplane of 200 people and we told at the beginning of the flight that from 4 to 6 random people would die on the flight, would you stay on? But Karl really doesn't really have a choice. Stem cell transplant is the Gold Standard for MM and people who aren't eligible fight to have a chance to get this treatment. So we tell ourselves that Karl won't be in that 2-3 % because....cancer is really a terrible disease. The other option is to stay home and then the mortality rate rises dramatically.
Then Dr. Jones threw us for a loop. He told us that when Karl was in hospital in Clarenville he had enlarged lymph nodes in his chest. We were shocked. After 7 months no one had told us that at all. I know it might have been the least of Karl's medical worries, but still...He continued by stating they might have been reactive to the pneumonia and blood clots, but he wanted Karl to get another CAT scan to see for sure. He has ordered another CAT scan in Clarenville. He seems certain that can happen before Karl is scheduled to start stem cell extraction on October 11, so hopefully. He didn't say what would happen if the lymph nodes were still enlarged, and we weren't expecting that information so we didn't think to ask. Information prepares you, but when you don't have information you can be blindsided. You have to pick your worry battles during this journey so unless we are told otherwise we are going to think as though the lymph nodes are now normal and the stem cell extraction process will start on October 11.
The next person to join us in the exam room was Karen, a social work assistant. She had called Karl earlier in the week about his medical insurance. She talked to us about where we were going to be staying during the stem cell process, and she gave us forms that allow us to claim mileage with MCP after 1500 km. We knew about that program because during the education session that RN Julie did with us at the start of the first chemo, she gave us the same forms. However, when we have meantioned it to others they haven't been aware of this program. If you drive more than 1500 km a year for medical appointments or procedures you are eligible. It's not just for cancer patients. Pass the information on. Then she talked about the drug neupogen. She had consulted with pharmacist Pam, and they had decided not to apply to Karl's medical insurance for this drug, which is an essential drug for young stem cell production, because the company always denies coverage. Instead Karl would get the drug through the Government 's compassionate program. Now that's a bit curious. Or I could say bothersome. Or maddening. Karl is a retired civil servant (police officer). I won't name his medical insurance company, but it is the one that all government workers except teachers have. This drug is a necessary part of a procedure that he needs, yet the government's own medical plan won't cover it and therefore the government has to pick up the cost separately....
The last visitor was Yvonne, a RN who manages the transplant program. She gave us consent forms, a calendar of appointments, and answered some of the questions that we had thought of during the down time of our 3 1/2 hours in the exam room. I had read every poster on the wall in detail, and was getting ready to go through the cupboards to see if they needed organization. Note to self...do not forget electronics or a book next time! I'm still humming, "This is the appointment that never ends, and it goes on and on my friend. We started sitting here not knowing how long, and we'll continue sitting here for ever just because it is the appointment that never ends, and it goes on and on..." The receptionist was gone home for the day when we finally waited outside the purple elevators. Karl shared that the morgue is around the corner and he made lots of overtime money in there while he worked in forensics. The information people have that you really don't need to know!
When we finally got home around 830 pm I had a glass of wine. Next blog will be after the CAT scan unless there is an update before.
Well the best news is that after 187 days on chemo Dr. Jones told Karl to stop taking it as of today. And he gets at least 2 weeks chemo free. But I'm getting ahead of myself.
Karl's appointment was for 1pm, so we left Eastport at 9am. For those of you not familiar with the geography of the island of Newfoundland, it takes 3 hours to drive from Eastport to the capital city of St. John's, and we only have two seasons, winter and construction, so you have to give yourself extra time.
Our understanding was that we had an appointment, so we assumed that we'd be out of the hospital by 2ish. We were wrong. We were led into an exam room right on time at 1, so at that point all looked great from our point of view. Then we waited. And waited some more. It was the theme of the afternoon. Nurse practitioner Charlene came in at 1:25. Her first information was that we would be meeting with several people, so the appointment would be a while. It's hard to define a while, but in this case it meant 3 1/2 hours. While I'm being a little sarcastic now because my latest memory is of the drive through the park in the rain after dark, we weren't that bothered at the time because we were so grateful to be at the stem cell stage after 187 days on chemo.
Like most of the medical personnel we have encountered, Charlene was very nice. She gathered Karl's personal history. (On a side note, what do they do with the pages of biography that they write when you meet each new person? It's a good thing files are mostly electronic because they'd have book size files of the same biography alone!) Then she explained the stem cell process and gave us time to ask questions. We'd done a lot of reading and asked others ahead of us, so our questions were mostly limited to the logistics concerning the when for Karl. Then she did a physical exam. Like always since the pneumonia cleared up, Karl's vitals were in the normal range. Charlene said text book normal. Then she left telling us that Karl's transplant doctor would be Dr. Jones, and we would be in next. Back to waiting.
Dr. Jones started by explaining the process in more detail, including telling us the drugs they would be using. I'll get to that as it happens. He also went into detail about the down side, which is a 2-3% mortality rate, a 5% rate of causing new cancers, especially skin cancer and leukaemia, problems with mucus membranes in your body, especially the mouth but in rarer cases in internal organs, and other common chemo effects like risk of infection, nausea, and diarrhea. Again we had read all that, so at the time we just let it all pass over with no comment. But Karl pointed out after Dr. Jones left that the mortality rate ranges from around 1/50 to 1/33, which is really quite high. If you got on an airplane of 200 people and we told at the beginning of the flight that from 4 to 6 random people would die on the flight, would you stay on? But Karl really doesn't really have a choice. Stem cell transplant is the Gold Standard for MM and people who aren't eligible fight to have a chance to get this treatment. So we tell ourselves that Karl won't be in that 2-3 % because....cancer is really a terrible disease. The other option is to stay home and then the mortality rate rises dramatically.
Then Dr. Jones threw us for a loop. He told us that when Karl was in hospital in Clarenville he had enlarged lymph nodes in his chest. We were shocked. After 7 months no one had told us that at all. I know it might have been the least of Karl's medical worries, but still...He continued by stating they might have been reactive to the pneumonia and blood clots, but he wanted Karl to get another CAT scan to see for sure. He has ordered another CAT scan in Clarenville. He seems certain that can happen before Karl is scheduled to start stem cell extraction on October 11, so hopefully. He didn't say what would happen if the lymph nodes were still enlarged, and we weren't expecting that information so we didn't think to ask. Information prepares you, but when you don't have information you can be blindsided. You have to pick your worry battles during this journey so unless we are told otherwise we are going to think as though the lymph nodes are now normal and the stem cell extraction process will start on October 11.
The next person to join us in the exam room was Karen, a social work assistant. She had called Karl earlier in the week about his medical insurance. She talked to us about where we were going to be staying during the stem cell process, and she gave us forms that allow us to claim mileage with MCP after 1500 km. We knew about that program because during the education session that RN Julie did with us at the start of the first chemo, she gave us the same forms. However, when we have meantioned it to others they haven't been aware of this program. If you drive more than 1500 km a year for medical appointments or procedures you are eligible. It's not just for cancer patients. Pass the information on. Then she talked about the drug neupogen. She had consulted with pharmacist Pam, and they had decided not to apply to Karl's medical insurance for this drug, which is an essential drug for young stem cell production, because the company always denies coverage. Instead Karl would get the drug through the Government 's compassionate program. Now that's a bit curious. Or I could say bothersome. Or maddening. Karl is a retired civil servant (police officer). I won't name his medical insurance company, but it is the one that all government workers except teachers have. This drug is a necessary part of a procedure that he needs, yet the government's own medical plan won't cover it and therefore the government has to pick up the cost separately....
The last visitor was Yvonne, a RN who manages the transplant program. She gave us consent forms, a calendar of appointments, and answered some of the questions that we had thought of during the down time of our 3 1/2 hours in the exam room. I had read every poster on the wall in detail, and was getting ready to go through the cupboards to see if they needed organization. Note to self...do not forget electronics or a book next time! I'm still humming, "This is the appointment that never ends, and it goes on and on my friend. We started sitting here not knowing how long, and we'll continue sitting here for ever just because it is the appointment that never ends, and it goes on and on..." The receptionist was gone home for the day when we finally waited outside the purple elevators. Karl shared that the morgue is around the corner and he made lots of overtime money in there while he worked in forensics. The information people have that you really don't need to know!
When we finally got home around 830 pm I had a glass of wine. Next blog will be after the CAT scan unless there is an update before.
First visit with the transplant team and we still didn't know if the process was going to move ahead or what was in store. While I wasn't concerned about the seven month old cat scan, you never know what else could show up with any new test, especially after pumping seven months of chemo drugs into my body. The meeting was like, 6:00 am waiting for the announcement for the Royal St. John's Regatta, "It was a go".
ReplyDeleteAnd by the way, the hospital morgue really was just around the corner but we were heading in the other direction. Not Today.