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Acute Myeloid Leukemia with Aberrant CD7
Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)Comment receiving replies
Hi Dear Lori-
So, here I am again, back three weeks later and I always feel badly about my delayed response because of all your amazing efforts. I hope you understand that I am very appreciative of your detailed quick responses. I get very overwhelmed with our endless "to-do" lists, overwhelmed emotionally, always living with a constant underlying sense of unease. Sometimes, just getting through each day is all I can do. And we are grateful as he has had almost no side effects. I appreciate your caregiver links and I did look at the Podcast. I am aware of what a caregiver should do to take care of themselves but will do better soon. Anxious about the next BMB and getting past day one hundred. We are at day 90 today! Thanks for the update on what to expect with medications Learning from you from the patient’s perspective is most helpful because I gain insight into the disease process and how to best to put myself in Richard's shoes.
I had not yet mentioned Richard's underlying conditions. It has been 6 months since he had a CT scan of his lungs which is typical, but with the new diagnosis and treatment, I think somebody should be watching over his lungs more closely. There was no pulmonologist on the transplant team. Same with his eyes, which is less of a concern as he controls mild symptoms with limited use of steroid drops. You are lucky to have Mayo and all that great coordinated specialist care.
He has started to move in the right direction as he has recently reached out to a couple of his pulmonologists and is scheduling a lung CT scan tomorrow. There was no pulmonologist on the transplant team. I think his eyes, since they are doing okay for the most part, will have to wait because of the Pandemic.
Re: the memoir. I am a decent creative writer, and I may have mentioned I wrote professionally for architects and engineers, which is helpful. I have been looking into the boundless information online re: coaches, courses, and it is overwhelming. Since the Pandemic, everyone wants to publish their stories. It is a very crowded field and too many options to choose from re: authors, coaches. Hoping to identify a coach or course led by an experienced instructor/author with a track record in medical narrative or medical memoirs if possible. I would like to identify someone who is work a professional who can help me through the entire process including concept development, the narrative, publishing, and marketing. Right now, I am feeling a little discouraged because everyone is telling a story, and many, are high quality. I am also a fairly accomplished painter and was considering integrating the artwork with the narrative.
I know you have so much to be thankful for and you deserve the best of luck in life! Wishing you a wonderful holiday season…including good health above all, inner peace, and lots of joy and humor. Do not forget to hang a guardian angel on your tree, one in your image, who faithfully guides your loyal following and yourself as well, down this complex winding path.
Warm regards and hugs too,
Lodi
Replies to "Hi Dear Lori- So, here I am again, back three weeks later and I always feel..."
Happy Thanksgiving to you and Richard, Lodi. Wow, he’s coming up on that all important Day 100. It’s not a magical number but it is a really big mile stone! At that point his leash will be loosened a little and hopefully your life will be finding some normalcy soon too.
I know as caregiver the onus of everything has been thrust on your shoulders, my dear. So I completely understand the delay in responding. I’m a no pressure zone! ☺️
Let’s get back to Day 100. After that point it’s felt that the danger of any acute GvHD has passed as the new stem cells are beginning to recognize Richard’s body and setting up housekeeping to restore his immune system. That takes time and patience. Ahead might also be some reductions in his Tacrolimus, the anti-rejection meds. With that, there is always a possibility of the new stem cells ‘testing the waters’ and creating some little GvHD issues along the way. Make sure if Richard senses anything different that he brings this to the attention of his transplant team.
I’d been doing amazingly well and then about 2 weeks after my first reduction toward tapering off Tacro, I started getting serious pains in my wrists and hands. Looked like rheumatoid arthritis was happening. Never had that before. But after MRIs and a host of blood work, the rheumatologist and my transplant doctor felt it was GvHD. A burst of steroids halted that in its tracks. So encourage Richard not to let little things go. It’s better to report so it’s at least documented.
How did his CT scan turn out? It’s good news that he’s turning proactive again with his help. At this 3 month mark, he’ll start feeling ‘somewhat’ healthy again. Long way to go so I don’t want him to get disappointed if there are good days and then ‘resting days’.
Hah, you’re right, i think Covid has left a lot of people with extra time on their hands granting the ability to reflect on their lives and contemplate their navels, as we say in our house. Don’t let that discourage YOU from stymieing your creative juices! We all need an outlet. You have some hidden treasures with your writing and painting talents! What’s your favorite medium for painting?
I want to wish you and Richard a special Thanksgiving. You’ve both come so far this past year, with your strength and commitment to each other being very apparent. We never know what lies ahead at any given time, do we? It’s important to celebrate every day.
I’m so grateful to have been given this second chance at life. It’s allowed me to enjoy this 3rd Thanksgiving after transplant! I won’t ever take another moment for granted.
I do have a guardian angel and I know I’ve been blessed with my health. My positive outlook and sense of humor along with tons of prayers, support from family, friends, my donor and my transplant team have kept me alive. And with that, I’ve also been blessed with another family, here on Connect. So Happy Thanksgiving, Lodi. We’re in this together. ☺️
Hi Lodi! Just popping in for a pre-holiday check up. 🤶🏻 How’s Richard doing? He’s in month 4 post SCT now. He should be cruising along a little easier with life taking on some normalcy and predictability. He’ll also be able to resume a few more activities around the house as his energy and stamina pick up. As always, avoiding illness is his goal. So, masking up is essential anywhere out in public or if people are in your home.
This is where I add; With a SCT you really need to keep a sense of humor and a sense of adventure because there can be these random, capricious side events at any given time, especially if there’s a Tacrolimus taper. Usually nothing earth moving…aches here, a rash there, tender joints, etc. He should report anything out of the ordinary to his team for consideration.
While he’s past the early stages of transplant where Acute graft vs host can run rampant, chronic GvHD is always a possibility, but generally develops slowly and is most often manageable. You just don’t want to let it get out ahead.
I hope you’re also doing well and getting back into a rhythm for yourself. It’s a challenge to balance everything. I know you’re compassionate and caring, and have dedicated the past year or so to getting your husband healthy and whole. But it’s easy to lose yourself in the process. You have your artistic side that needs to be expressed! So I do hope you’re finding the path back to YOU!
We’re getting ready to leave your warm state of Florida to return to Wisconsin for the holidays. Brrrr. To quote Arnold: We’ll be baaaack! (End of January into March!). It’s going to be a shocker in the meantime. I have to wear long pants again and find my shoes!! And socks! 😂
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Hi again, Lori
I forgot to mention, thank you for sharing that you had a friend who might be able to offer guidance with the memoir. And, also for offering to help several other friends I've made on the same journey. People do sometimes shy away from reaching out, but I appreciate your kindness all the same and will share your information.
Looking forward to our continued conversations!
Thanks!
Lorraine