6 month post transplant update

 So....it's be a minute. 

It was hard when we came home from the apartment about 3 months after transplant. I expected to feel better. Some weeks later I realized I was finally feeling more normal. The yucky edgy feeling in my body had lifted. I think Andy (hip replacement shortly after I came home) and I became actually euphoric for a bit - there is nothing like relief from pain to make you feel great! 

Emotionally it has been nice to leave cancer behind in a way I haven't been able to do for so many years. I think that is why I haven't been updating here for so long. I just celebrated the 6 month post transplant milestone.

I had a PET scan about two weeks ago. I saw on the portal that some of the old lymph nodes on my neck were showing up again. We cancelled the scheduled removal of my port. 

We met with the T-cell Lymphoma specialist (Haverkos) remotely a few days ago. He is wondering if the lymph nodes are from my having some dental work done the week before the PET scan. It's possible, I suppose. But, to be honest, the lymph nodes (the frankenstein nodes as I've called them) are very familiar. They don't go away. I am kinda bummed. 

I try to put it aside. I remember what has comforted me so much all along: the assurance that God knows what is in store and He is for me. But I think I'm still a little bummed. 

I've been going to physical therapy twice weekly and loving an acqu-exercise class at the YMCA. I also walk with a friend at least once a week. I'm concerned that I won't be able to keep improving as we travel coming up. I know I need to keep it simple - walk and stretch every day when I'm not at home. 

I have some considerable neuropathy in my feet that can really get to me at night. It's easier to ignore my fingers. I have a lot of hip/leg pain which is probably gluteal tendonopathy, which can wake me up at night.  I feel so good when I'm exercising and stretching but then deal later with hip pain. I'm so thankful the pain in my shoulders is so much better (tendonitis probably brought on by the chemo drugs used for the transplant). After exercise, I can feel like I'm walking through mud for hours afterward. It's challenging to know how much to do or not to do. 

 Anyhow, I like my gray short hair more than I expected. I never would have had the guts to cut it this way and go gray but here I am and I'm thankful I don't hate it. Being bald and all the stages of it could do something to my psyche. I actually get complements on my hair from people who have no idea what led to it being so short and gray.  

I go back in November for another PET scan. There is no sense in worrying in the meantime. as my mom would say, "Don't borrow trouble," In other words, don't worry until you have something to really be concerned about. 

I had the port-o-cath taken out today. I hated this one I had put in about a year ago to replace the old one, because it stuck so far out of my skin and felt foreign. I am grateful to Dr. Raleigh for talking me into a port about 7 years ago. It has saved my veins. I've met so many people who never got a port and now they really struggle when giving blood or getting IVs.  

It's been such an interesting process - I have appointments about every 3 months with a gynecologist as part of the transplant team and I have a "survivorship" appointment tomorrow with someone.

Anyhow, like everything in life, there are the positives and the negatives. Learning to hold them both simultaneously without yearning for the negatives to leave has been part of my life learning. I'm very grateful for today. That's really all we've got anyhow. And I'm blessed beyond measure. 

Hugs to all!