Tuesday, August 6, 2013

Out of the hospital.

I am out. Got released yesterday afternoon, which is a full week earlier than they had originally suggested. I have a meeting with Dr. Meehan on Thursday, so we are staying with my second cousins (my mom's cousins) who live in Vermont. They have a beautiful home on some beautiful land and they are two of the sweetest people you could hope to meet. Becky and I are enjoying sitting on the porch reading, looking out at the gardens. The day has been very nice. 

I am doing well enough that they did not bother to drain the rest of the fluid from my lung, but believe that it will be re-absorbed naturally. My breathing seems to be uninhibited, although it is not like I am doing windsprints or anything very challenging. The lymphoma is in remission, although it still shows up on the PET scan. The doctors and I believe that my donor cells are going to take care of it. The doctors believe that it will try to relapse eventually, but we can keep it suppressed with the chemo drug Velcade before it becomes an actual relapse. So my worst-case scenario has changed from "September" to "several years".  Basically, until my lymphoma become resistant to the Velcade. I still have high hopes that my donor cells will stay ahead of the lymphoma indefinitely. While I will never be "cured" because my lymphoma is refractory, if I never have another relapse, it is basically the same thing. As long as the donor white blood cells recognize and hunt down the lymphoma faster than the lymphoma reproduces, I will not have a relapse. I have some faith in my donor cells. So far they have responded well above typical. Go team!

The only problem I currently have is a pain in my abdomen directly below my spleen. Nothing showed up on the PET scan or on the X-ray that I had, so it is probably not anything that will lead to further complications, but it hurts quite a bit. I am on a good amount of pain killer, and it is all for this abominable pain. It has been going on for about a week. Originally we thought that it was a gas bubble, as some of the medications that I was on were causing me some problems in that area, and then the thought was that perhaps something was bruised. Although Becky just reminded me today that I had a very similar pain, in the same place when my spleen was shrinking. It is, in fact, shrinking again. So that might simply be the problem. There is probably still scar tissue in there from when it was so swollen, and is it shrinks it tugs on things and pulls in ways that are uncomfortable. It is one of the things that my doctor and I will discuss on Thursday.

If that meeting goes well, we will be back in Cundy's harbor that evening, and back in Brooks on Friday. We are planning to stay up there permanently, except for regularly scheduled trips back to Dartmouth-Hitchcock for check-ups. We are excited to finish our house, so that is the big push through the end of the summer and the fall. 

Leif

10 comments:

  1. Wow, that is great news! At least in comparison to last month's. Glad to hear your spleen is shrinking again, but I hope it stops hurting soon.

    From what I've read about lymphocyte infusions, they've only just barely scratched the surface on that kind of therapy. Given the apparent possibilities a real cure may not be far around the corner. Which is good since I think we're going to need the extra time to work out the kinks in our Mars liner.

    Looking forward to seeing you next week!

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  2. I am so happy to be reading a report full of such good news. It's wonderful to hear you will be back in Maine so soon and heading home.

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    1. This. Couldn't have said it better myself. ;)

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  3. Holy fucking shit that is good to hear!!! Dear gentle readers, please forgive the profanity, but it surely feels justified and appropriate. Holy fucking shit that is good news!!!

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    1. This. Couldn't have said it better myself. ;)

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    2. Yes, holy fucking shit. Need more of that! Meaning..,,good leaps (or crawls, whatever the case may be, but we hope it's leaps) of recovery. Come on, big money, donor cells...no whammies.

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  4. Leif...you continue to amaze me! I am so freakin' happy that you are doing this well. Keep going man. Doctors never really know what we are capable of. The human body is holy funking shit cool and surprises doctors and scientists all the time. I for one am so thankful for this news. We love you!!!

    Robin and Jeremy

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  5. I came across your wonderful blog as my father has MCL and is about to go to DH for a donor transplant - this Friday. He also had a transplant with his own stem cells and it came back just before a year. I really really appreciated your level of detail and its been really informative. Thank you so much for taking the time to share these updates and all that you are going through. Wishing you the very best, its definitely a long challenging road. Really glad things are trending positive. - K

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  6. Hope to see you soon, Leif. hugs! - Julie

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  7. Sorry to take so long to comment (a month of overwhelming work & health issue stress!)... I am so relieved to hear this. You have to be realistic & realize the MCL will likely come back but if you stay on top of it, you can beat it back. There are so many treatments & maybe a CURE right around the corner & you can hang on til then... I never believed that "September" thing. Lots of love, Karen

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