I'm In
I got up this morning and shaved all the hair on my head to 1/8 inch, including mustache and eyebrows. I didn’t eat or drink (since midnight) because of the operation to insert a Hickman catheter into my chest which I was scheduled to get at around 11:00 AM. I showered, loaded my stuff in the car, and then Jody and I headed off to the hospital. I was surprised how anxious I wasn’t – no sense of dread or anything like I was afraid I might. The One In Charge has see fit to fill me with a sense of peace and equanimity.
We got to the hospital at 8:15 and went right up to the fifth floor to check in. I got a room called an LAF room which is for people who are having a full myeloablative transplant. I forget what the “L” in LAF is for but the AF is Air Filtration. It has a big plastic screen which the patient is behind, while everyone else is in front of, including the nurses and doctors most of the time. It is essentially the “bubble”. I don’t need the LAF room (and the plastic divider can be moved aside), so I will be move into another room in a few days when one becomes available. After labs were drawn, Jody and I sat around in the room until about noon when we were told that the platelets that I needed to have transfused had not been ordered and would not arrive from the Red Cross until about 1:00 PM, so everything would be delayed. My blood counts showed me to be neutropenic (may absolute neutrophil count was 0), so everyone who came in the room, including nurses and doctors, had to wear a mask and wash their hands.
At about 2:00 PM, the nurse informed us that the operating room for the catheter insertion was being used and we would have to wait until it was available, but we were assured we would still have the operation and start the chemotherapy. I still hadn’t had anything to eat since supper yesterday. Finally, at about 3:30 PM, they were able to transfuse the platelets and then get me down to the operating room at around 4:00. The operation went fine and was not all that uncomfortable. This catheter will stay in my chest probably for at least 100 days and is used to draw blood and insert all kinds of drugs and blood products as well as nutrition if necessary. I got back to my room at about 5:30 PM and ate my supper and most of my lunch. At about 6:00, I was told that I would not get chemotherapy that day because the doctors wanted to be around for my first dose and there were gone by then. As a result, everything has now been pushed back a day and my transplant is scheduled for August 20.
The doctor who is charge of the bond marrow transplant team here came in and talked to me for a while this afternoon. He also patiently answered all our questions. Some of the things he said that I found interesting were things like the time I’m taking the chemotherapy will probably not be bad and that all the way through the transplant, I will probably feel fine. He said I should start to feel worse on about Day +3 (3 days after the transplant) and will probably feel worse still through about Day +9 when the new marrow will start putting out new cells. After that it gets really unpredictable because each patient reacts differently. If all goes well, I may go home by about Day +14, but complications could extend the stay. The things that could go wrong are too numerous to list, but basically it could be some kind of infection because of the neutropenia and immunosuppressant drugs or a manifestation of Graft Versus Host Disease (GVHD) which could be mild or severe or anywhere in between. He said that occasionally but not frequently, he gets a patient who doesn’t have problems with infections or GVHD and successfully wipes out the leukemic cells. They might ask him when they’re going to start feeling bad and are told they’re going home the next day. I told him that I was voting for that outcome. Actually, while I would like that path, I’m certainly not counting on it. He has been doing bone marrow transplants since 1982 and has seen huge advances since then, especially in the drugs they have available to treat the problems that arise. He says I have I lot going for me including not actually having leukemia yet and being healthy. He said several times that he is quite positive about my chances to be cured which he says is a good 50 – 60 percent and is a good cure rate. I still wonder if that is a conservative answer that they feel is good for not getting expectations too high. It would make sense if they did that. Anyway, those numbers don’t seem to frighten me much because I still have confidence that I will get through it all.
Some of you will find it somewhat amusing to hear that when I asked several times if there was Internet access in the hospital, I was told that there was, only to find out that what is available is a telephone line for dialup access! To me, the correct answer to my question would have been no, we don’t have Internet access but you can dial up if you have dialup access. As I’m writing this, I don’t have a dialup provider so will have to figure something out. Also, a dialup connection is much less conducive to getting work done for my employer. Oh well.
I’m feeling good and am glad we’re underway.
We got to the hospital at 8:15 and went right up to the fifth floor to check in. I got a room called an LAF room which is for people who are having a full myeloablative transplant. I forget what the “L” in LAF is for but the AF is Air Filtration. It has a big plastic screen which the patient is behind, while everyone else is in front of, including the nurses and doctors most of the time. It is essentially the “bubble”. I don’t need the LAF room (and the plastic divider can be moved aside), so I will be move into another room in a few days when one becomes available. After labs were drawn, Jody and I sat around in the room until about noon when we were told that the platelets that I needed to have transfused had not been ordered and would not arrive from the Red Cross until about 1:00 PM, so everything would be delayed. My blood counts showed me to be neutropenic (may absolute neutrophil count was 0), so everyone who came in the room, including nurses and doctors, had to wear a mask and wash their hands.
At about 2:00 PM, the nurse informed us that the operating room for the catheter insertion was being used and we would have to wait until it was available, but we were assured we would still have the operation and start the chemotherapy. I still hadn’t had anything to eat since supper yesterday. Finally, at about 3:30 PM, they were able to transfuse the platelets and then get me down to the operating room at around 4:00. The operation went fine and was not all that uncomfortable. This catheter will stay in my chest probably for at least 100 days and is used to draw blood and insert all kinds of drugs and blood products as well as nutrition if necessary. I got back to my room at about 5:30 PM and ate my supper and most of my lunch. At about 6:00, I was told that I would not get chemotherapy that day because the doctors wanted to be around for my first dose and there were gone by then. As a result, everything has now been pushed back a day and my transplant is scheduled for August 20.
The doctor who is charge of the bond marrow transplant team here came in and talked to me for a while this afternoon. He also patiently answered all our questions. Some of the things he said that I found interesting were things like the time I’m taking the chemotherapy will probably not be bad and that all the way through the transplant, I will probably feel fine. He said I should start to feel worse on about Day +3 (3 days after the transplant) and will probably feel worse still through about Day +9 when the new marrow will start putting out new cells. After that it gets really unpredictable because each patient reacts differently. If all goes well, I may go home by about Day +14, but complications could extend the stay. The things that could go wrong are too numerous to list, but basically it could be some kind of infection because of the neutropenia and immunosuppressant drugs or a manifestation of Graft Versus Host Disease (GVHD) which could be mild or severe or anywhere in between. He said that occasionally but not frequently, he gets a patient who doesn’t have problems with infections or GVHD and successfully wipes out the leukemic cells. They might ask him when they’re going to start feeling bad and are told they’re going home the next day. I told him that I was voting for that outcome. Actually, while I would like that path, I’m certainly not counting on it. He has been doing bone marrow transplants since 1982 and has seen huge advances since then, especially in the drugs they have available to treat the problems that arise. He says I have I lot going for me including not actually having leukemia yet and being healthy. He said several times that he is quite positive about my chances to be cured which he says is a good 50 – 60 percent and is a good cure rate. I still wonder if that is a conservative answer that they feel is good for not getting expectations too high. It would make sense if they did that. Anyway, those numbers don’t seem to frighten me much because I still have confidence that I will get through it all.
Some of you will find it somewhat amusing to hear that when I asked several times if there was Internet access in the hospital, I was told that there was, only to find out that what is available is a telephone line for dialup access! To me, the correct answer to my question would have been no, we don’t have Internet access but you can dial up if you have dialup access. As I’m writing this, I don’t have a dialup provider so will have to figure something out. Also, a dialup connection is much less conducive to getting work done for my employer. Oh well.
I’m feeling good and am glad we’re underway.
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