A strange new normal

Today was oncology day. No big deal, really, but the day I go to Memorial Hospital North on Briargate to check in with Dr. Mellott, the oncologist. I refuse to call her "my oncologist." I need to review things to know details of medications, clinical trials, updated information about this lymphoma and what's going on in the world of research and data. It inevitably makes me weepy and today it was like I was transported back 6 years to that vulnerable fearful place. I feel like I need to be smart and assertive while still relying on people who know things I don't. It hits something deep in me and wears me down quickly. 

I think it's the fear of having to jump into CHOEP that scares me the most. For good or bad, I believe that would be the beginning of the end of my general health. Just about everything I have done makes me feel horrible, even though I am so grateful for the way the targetted medications have helped with symptoms like the swollen tonsils and other lymphnodes. 

Prednisone has been such a miracle drug for me but I have so many of the bad side effects. I continue to gain weight. My BP is up as is my blood sugar. I think I have the hump at the base of neck forming. I have sleep problems. I'm more suseptible to infection, Cushing's syndrom with excessive cortisol, low calcium levels causing osteoporosis, high white blood cells, bleeding in the stomach or intestines, thin fragile skin (which I have for sure.) I've also got the puffy face.

So, she wants me to get on Metformin, which I have resisted, and Revilimid / Lenolimide. It is actually only approved for Multiple Myeloma but there is some new data that says it can help with stable (indolent) proliferal t-cell lymphma.

Comments

Post a Comment

Popular posts from this blog

Ya, I'm starting cytotoxic chemo tomorrow.

 The MD/Researcher, Dr. Haverkos, called this afternoon to talk about yesterday's PET scan. It appears the first couple months the drugs held the disease at bay but the last two months, it has take off. After asking other questions I don't have the energy to share right now, he suggested I go into the hospital tomorrow and start Brentuimab and CHP. The letters all stand for drug names.  Again, I'm struggling to stay awake so I'm not including as many details right now.  The time in the hospital is a stretched out series of IVs, instead of the usual doing it all at once, to protect my kidneys that already seem stressed. The first round of chemo (I will do 6) kills off the most tumor load, so stretching it over a week is a good idea.  After 2 months, we will do another PET scan to see how we are doing.  I feel like it is time to get after this and see if we can actually get it into remission. He mentioned a Bone Marrow Transplant, which I hope we don't have to do....
Read more

The good and the bad - accepting both.

 I'm thrilled to report that the port wine colored blotches that look like huge deep bruises on my legs are looking better! I thought they were permanent. My hair is falling out faster than I expected. I guess things are just as they should be: cytotoxic chemotherapy kills newly dividing cells, healthy or cancerous. The lymph nodes in my neck are definitely reduced. I'm having night sweats which is a "B" symptom of lymphoma.  I'm 12 days out from the last chemo so I kind of expect to feel really good by now but I realize I am not sure what that is. My muscles all hurt. I'm going to take an Epsom salt bath in a bit. Is it the lymphoma? the chemo? or from being so sedentary? I don't know but I hope it improves soon, especially my neck, which really hurts a lot of the time. We keep trying remedies. I go to a a chiropractor, an acupuncturist, and a massage therapist and my hubby puts patches and CBD pain stuff on it all the time. It has resolved in the past bu...
Read more

Staying flexible and trusting in God's perfect timing

Image
Howdy. I so hope your 2025 is starting off well. We had such a wonderful holiday season with an exceptionally fun time celebrating my 60th birthday, the end of 2024 filled my emotional cup in a very special way. It's been nice having these unexpected free days since going into the hospital was postponed to get organized a bit, meet with friends from my Al-anon group, see our small group from church, go to church which I love, and just regroup after such a busy time.  I got another call today from the nurse transplant coordinator. It turns out donor #2, from Poland, is not eligible to donate for some reason. The nurse explained that donor #1, from Germany,  was re-contacted - she had told the doctors she could not donate for at least 2 weeks later than what they wanted. Because there is some danger in waiting (if the lymphoma comes back, I'd have to do chemo again before transplant), they had gone on to #2. The first one is now able to donate 1/30 so I will now go into the hosp...
Read more