← Return to Bone marrow transplants for CMML

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@katgob

Lori,

I live about 16 miles from the City of Hope. It looks like i will be in the hospital for 2-4 weeks and have 2 visits a week for 100 days? Complications? I walked through my past diagnosis researching my doctors and finding out they were some of the bests, connected with the nurses and asking questions. Putting concerns in the portal. If I feel good on my weekly visits, I will drive myself. I used to stay a bit on some infusion days and get food in the cafeteria. At COH we were offered a sandwich and snacks during our infusions, so I normally was good to drive home. For me Chemo did not hit me for 2 days.

I easily drove myself to all my chemo and other infusion appointment's the last 2 years. For surgeries and those things, I had drivers. Friends. My local older sister did not get a Covid vax, so my trusted friends helped. This sister did not want a genetic test. She knew 3 of her 4 siblings had the BRCA2 I had. Our younger sister removed her ovaries and fallopian tubes as i did. This sister did not and had ovarian cancer last July. I do not believe in fooling with genetics. Eating healthy, checking for additives in food and the environment is good.
This blood cancer she seems to finally get. With her cancer and 6 rounds of chemo she gets it to some degree. So, she plans to help me through this process. She is planning to move from California to Indiana to be near her daughter and grandkids, but not yet.
I thought about your young donor Lori and checked out "Be a Match". It did mention donors starting at 18 give likely the best chance for our bodies to accept their blood. I love your comments about feeling like a 20-year-old. B+ is a blood type i do not hear much. I was A+ which at the time in the early 90's was 27% of the population. A childhood neighbor lived with 3 days a week dialysis for 19 years, so looking at the donors in the beds at the Red Cross, I decided to do it. My platelets could go to anyone. I started out every few months, but in 2021 I was once again on a roll to donate more than 20 times. I have a picture on the wall there. I knew i would keep doing it till i could not. My last donation was in June. I found my breast lump and started my journey.
I saw on Be a match we possibly can write a letter to the donor. It would be checked by a number of people, but with my donations I would love to thank this young man. I receive blood and platelets through my cancer chemo journey. I cried when I got them, as I knew the love of the person donating. Movies only go so far in the couple hours of donating platelets. Love is present and gratitude that you can.

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Replies to "Lori, I live about 16 miles from the City of Hope. It looks like i will..."

I’ve tried several times over the past 5 years to initiate contact with my donor through Be The Match. He’s chosen to remain anonymous. During my initial recovery period I sent a little painting I did, along with a thank you note to let him know how grateful I was for his gift of life. I never heard anything back. So I may try one more time now that it’s coming up on 5 years the end of June. He owes me nothing but I owe him everything. ☺️ I’d really like to thank him in person or at least get to know more about him? Why he donated, etc.. and the fact that he’s a hero for me and my family.

It will be beneficial for you to find out the protocol for City of Hope and how they handle the stem cell procedure. It’s really great that you live so close! The first 2-4 weeks are the roughest so if you’re in the hospital during that time, that’s actually not a bad thing, especially if you don’t have a full time caregiver. You’ll be tended to nicely there and well taken care of.

Depending on the program, usually the pre-conditioning chemo is 5 days directly before transplant. For me the first 2 days were outpatient with little to no issue. Day 3-5 there’s an additional chemo added and that definitely let me know I was ‘not in Kansas anymore’. LOL. After that last session, there is usually a day of rest with just fluids being flushed through your system. Day 7 is called Day Zero and that is the transplant day. Totally anti-climactic event after all the hype! Takes about 15-30 minutes, looks just like a bag of plasma cells being infused just like a transfusion.

Having someone who can give you rides, help get groceries and such will be important the 2nd month. There can still be weakness and unpredictable days those first couple of months. So you may not feel like walking great distances if there is parking/walking involved. Just so you’re aware. I’m sure you’ll have meetings with a social worker and a transplant team to help you navigate what to expect.

You have a lovely and positive attitude about all of this! It is so beneficial to your health and recovery. ☺️