Last Wednesday, I had my PET scan. The results showed that by spleen is still getting smaller, but I do have some other lymph nodes that are enlarged, so I am not completely clear of the lymphoma at this point. The doctors, though, are pleased with my progress. With the type of transplant that I had, the last of the lymphoma is taken out by the new white blood cells. They have not quite been up to the job, since I am on heavy immune suppressants. It is a balancing act right now between training the new white blood cells not to attack my organs, and allowing them to attack the remaining lymphoma. The doctors did not expect me to be clear at this point, but feel that I am doing well.
On Thursday, I had a bone-marrow biopsy, so that we can get a very good idea of the state of the chimerism, the amount of lymphoma, and the density of the new cells production. I was supposed to have it under sedation, and they gave me the same drugs as I got last time. Last time, it worked like a dream. I did not feel a thing and all went smoothly. This time, I did not feel the effects of the drugs at all. As far as I can tell, I did not receive anything (I know that is not true, because I saw the bags of drugs empty into my bloodstream), but they had NO effect. I felt everything, I did not have any grogginess afterwards. It was pretty bad. This is the second operation that I have had were the anestesia did not kick in. I know that I tend to be resistant to many anestesia drugs (I understand that it is relatively common in Aspies). But still horrible. We have had a couple of conversations now about it and I think that the problem will be taken care of in the future. Currently, there is no STOP and CHECK procedure to make sure your patient is actually under before proceeding. This is not actually as stupid as it sounds, since almost no one has a problem with anestesia, but it can take a little while to kick in, so they start in on the prep. Still, I will not be having any more surgeries with out a STOP and CHECK at that point, along with a plan B on the anesthetic.
We won't get the results from the biopsy for 2 or 3 weeks. They have to actually check the DNA of the cells to see which ones are the donor's cells and which ones are my original cells. It is fussy, time-consuming work. It is sort of amazing that they can even do it.
On Friday I finished packing up the apartment. Becky currently has a medical problem with her arm and neck, so it is all she can do to work for her job, and then she is wiped out. So I packed and labeled everything. Packed the car. And then on Saturday, my cousin Joe came with his truck and he helped load that up and move us to my parent's place in Harpswell, ME. Where we unpacked the truck.
I pushed myself to get the move done. Unloaded everything in the livingroom and then went to sleep. I have slept most of Sunday and Monday. I will probably be doing a little better today. Sunday and Monday tend to me low energy days for me anyway, because my medication changes on Friday of every week, and it takes a while for my body to adjust.
Still, so good to be back in Maine. I still need to go to DHMC on the 23rd, and probably every other week for a while, but it is only 3 hrs, and worth the drive to be back. I am especially glad, since with my mom, and her friends, we have a little more support, and I have an extra care-giver. Becky needs several weeks just to rest and heal from her condition, and it is a relief to her that she can leave the house and someone will be around in case of emergency for me.
On Thursday, I have a meeting with Dr. Connelly, in Brunswick. I was looking pretty wane last time she saw me, so I think she will be pleased with how I am doing. Dr. Meehan has been sending her weekly reports, as well as phone-calls, so she is up-to-date. If I have the energy, I am going to try to go to North Ward and see all the wonderful nurses who helped keep me alive last august. Ah, good times.
Leif
On Thursday, I had a bone-marrow biopsy, so that we can get a very good idea of the state of the chimerism, the amount of lymphoma, and the density of the new cells production. I was supposed to have it under sedation, and they gave me the same drugs as I got last time. Last time, it worked like a dream. I did not feel a thing and all went smoothly. This time, I did not feel the effects of the drugs at all. As far as I can tell, I did not receive anything (I know that is not true, because I saw the bags of drugs empty into my bloodstream), but they had NO effect. I felt everything, I did not have any grogginess afterwards. It was pretty bad. This is the second operation that I have had were the anestesia did not kick in. I know that I tend to be resistant to many anestesia drugs (I understand that it is relatively common in Aspies). But still horrible. We have had a couple of conversations now about it and I think that the problem will be taken care of in the future. Currently, there is no STOP and CHECK procedure to make sure your patient is actually under before proceeding. This is not actually as stupid as it sounds, since almost no one has a problem with anestesia, but it can take a little while to kick in, so they start in on the prep. Still, I will not be having any more surgeries with out a STOP and CHECK at that point, along with a plan B on the anesthetic.
We won't get the results from the biopsy for 2 or 3 weeks. They have to actually check the DNA of the cells to see which ones are the donor's cells and which ones are my original cells. It is fussy, time-consuming work. It is sort of amazing that they can even do it.
On Friday I finished packing up the apartment. Becky currently has a medical problem with her arm and neck, so it is all she can do to work for her job, and then she is wiped out. So I packed and labeled everything. Packed the car. And then on Saturday, my cousin Joe came with his truck and he helped load that up and move us to my parent's place in Harpswell, ME. Where we unpacked the truck.
I pushed myself to get the move done. Unloaded everything in the livingroom and then went to sleep. I have slept most of Sunday and Monday. I will probably be doing a little better today. Sunday and Monday tend to me low energy days for me anyway, because my medication changes on Friday of every week, and it takes a while for my body to adjust.
Still, so good to be back in Maine. I still need to go to DHMC on the 23rd, and probably every other week for a while, but it is only 3 hrs, and worth the drive to be back. I am especially glad, since with my mom, and her friends, we have a little more support, and I have an extra care-giver. Becky needs several weeks just to rest and heal from her condition, and it is a relief to her that she can leave the house and someone will be around in case of emergency for me.
On Thursday, I have a meeting with Dr. Connelly, in Brunswick. I was looking pretty wane last time she saw me, so I think she will be pleased with how I am doing. Dr. Meehan has been sending her weekly reports, as well as phone-calls, so she is up-to-date. If I have the energy, I am going to try to go to North Ward and see all the wonderful nurses who helped keep me alive last august. Ah, good times.
Leif
So glad you're in Maine! (And, you rascal, doing all that packing...you know you should have called--you could have sat on the couch and directed the packing rather than physically doing it all! Amazing and impressive that you COULD do it, however--congratulations on all your hard healing work that has gotten you this far! I'm glad you can rest more easily now with more support for both Becky and you--thank-you Leif's mom!!!) And did you say "day 98?!?!?" That means today is day 99, and you are so close to being out of the darkest, most dangerous section of woods--congrats on that, too!!! I'm sure there are still going to be woods to travel through, but I'm excitedly confident that if you continue your dedication to your healing, all will be well. Love, love....
ReplyDeleteYes, crossed DAY 100 with flying colors. I am anxiously waiting for the results of my bone marrow biopsy, which will probably not be in until my June 6th visit. My PET scan shown probable traces of lymphoma, but well within what the doctors expected. As my immune-suppression tapers, my donor cells are supposed to take out any remaining lymphoma cells, and they have started tapering my immune suppressants pretty quickly now.
DeleteBut the excellent part is that my donor cells have settled in, and are cranking out blood and platelets, just as they should, so an infection now is not nearly as life threatening as it would have been just a month ago.
Still worth going through great lengths to avoid though. :)
Aaah, Maine is a better place with you in it! Enjoy this stupendous weather. Sorry I will miss your visit with Dr. Connelly on Thursday, but I'm sure I'll see you at another visit.
ReplyDeletePaula
Yes, I will definitely come by on a day that you are working. I missed seeing Cheryl as well, as she gets on after 3pm. The three of us need to get together and have lunch sometime soon.
DeleteExcellent idea, lunch would be great! I am off Thursdays and Fridays; email me at psjacunski@comcast.net. Would love to see you and Becky as well...Dr. Connelly tells me you have hair now :-) ! We can come down Harpswell way to whatever you like or is close to you for lunch.
ReplyDeletePaula
Leif, fyi, I've called and emailed Cheryl and invited her to join us for lunch tomorrow. Her phone number is 353-2224 and her email is noefan@msn.com.
Delete