My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Sally: I am 18 months past my SCT date and I am finally feeling like my preSCT self. I am clear headed, energetic and (this feels weird to write) I feel normal. I did not think it would take me this long to recover - I naively believed that at 1 year I would be recovered completely. My age (75) probably makes my recovery different from and longer than what most patients experience. I am grateful to be where I am today. For me, it is encouraging to know that recovery can continue for several years after SCT! 1 year is a milestone for sure, but it is not the end of recovery.
--Betsy

I have been back to work in person for nearly 3 weeks and I am tired. Our office moved and everything seems to be in boxes. The students no longer have their own space, so they are right with us. We have an event our department puts on for foster parents Friday and my supv has let me do most the work. I think he had students do it the year i worked from home. OMG. Tomorrow i have just some to do. I tried to get most done yesterday and today. This is possible because a year past transplant i feel great. I wondered if i would get my steps in and I realize if I walk in the morning, I get all i need.
So the Friday event i will go in to set up for 1.5 hours. Talk with the facilities guys to make sure it is set up. At 8:30am I have my friend joining me to take the train to the City of Hope. It is their annual Bone Marrow Transplant reunion. My very 1st year!!! There was no way i was going to miss it. Day 385 past transplant. I look forward to hearing the success of so many and hearing from patients meeting their donor and more.
I am needing to say i am still a transplant patient. My hair growing longer is so good, but as my NP said when she asked if i had returned back to work last month. She said you are still needing to take care. You are only a year out and your body is still adapting to its new system. So far not too many hiccups. I also have my check up on May 2nd after the event. I will ask the DR or the NP, whomever i see, what did the BMB show about my blood type. Those statistics are not on the results i get. As bacher said above, the BMT recovery is ongoing. The 26yr old donor has settled in with my body, but more time to make me the forever home needs to happen.

Hey Miss Kat! I thought you’d been pretty quiet the past couple of weeks. Now I know why! Wow, you’ve jumped in with both feet, having gone back to work full time! That’s a real demand on your body…but good for the soul…or psyche. ☺️

Your nurse is right though, to take care of yourself. While it feels great to be normal, you still have to listen to your body. It may be housing 27 year old (aged a year) donor cells, but it’s still an infant in transplant years. Toddlers need rest. 😂
I still have periods when I’m just living life like a 20 year old and then, bam, I’ll have a day where I feel all of my 71 years! Rest and recharge and then I’m good to go again. It’s tough to keep active people down, isn’t it? Especially when we’ve been given a second chance. We’re not about to waste a moment. LOL

Have a wonderful time at the Chimera, I mean BMT, reunion!! 🦄. 😁 You’ll be a huge motivator for the newbies and I bet you’ll be thrilled to meet the veterans of the program! We all support each other! I want to hear all about it!! Hugs.

Thank you, Lori. I hope to get some pictures to post!!!

Yes, about my toddler cells. I have been going full steam ahead as if i am completely back to normal.
Two students have been in our new place a with sneezing and i had to stay in a different room away from them. Lysol after they left. I completely forgot i could throw on a mask.
I need a reminder on my wall calendar at home.
Kathy, you are a bone marrow transplant patient. Live your life know you are 1 years old. My bone marrow donor is 27. Crazy.
I will be off Fridays during the summer, so more time at home doing fun things i had done like posting more here for starters. Plus, I need to look up my passcode to log in from my phone. I do not have it.
Wishing consistency and acceptance to all in the process of the BMT process.

Hi Kat, particularly frightening right now is the measles outbreak. It’s one of the most highly contagious viruses, spread by the coughs and sneezes of infected people and direct contact. Sooo…you might want to keep masks in your desk or glove box of the car, or one tucked in your bag. Just in case. ☺️

I will Lori,
I have a vaccine tomorrow, but it is one you need to get twice. Otherwise, I am done with the vaccines I will ask them about measles.

Hi Kat, The MMR vaccine isn’t usually given until 24 mo post BMT so you may still have one more to go. ☺️
(2 sessions, spaced 6 mo apart).

Have fun at the reunion today!!

I was told since measles area a live vaccine, i cannot have it till i hit 2 years!! My vaccine this time was 4 with one being a cousin of the flu.
I got to talk to the NP. I have found this 2nd time with the Hematology team that Hannah knows my story Like my breast oncology NP did. She can let the Dr. know through the chart. All mt blood numbers are good. She ordered the blood test to check my blood type next month.
It was wonderful attending the reunion. My neighbor went with me and my brother joined. All of us came on the train. We had ginormous buttons and i walked up to a dozen long term people and 1 year like me for stories. I was such a joy to know i was one of 20,000 transplant patients around possibly 1000 or 2 others. We could bring 2 guests, so that was good. In line for lunch, I talked with an enthusiastic HLA research dr. She loves being part of the team that gets to see the 100% match come to fruition. Reminding me the many Drs, NPs, Scientists that make a transplant possible. This is one of the times i google. HLA was known to me as 2 times when i donated platelets i was an HLA match for patients. When i think about that know, a transplant donor I could not have been. Age for first but not male either. 600 plus sets of platelets went to people and that was my donation.
Grateful for this site, that lets me be part of hope for BMT patients.

Sometimes I do not spell check enough. As i tell students in our office, some words have different meetings. Know and now for instance. I know what you did and now it makes sense.
When i reread something I wrote i find word mistakes like this which is good. It is a reminder I see it and mindfulness before posting will help.
I work with former foster youth, formerly incarcerated students as well as mainly facilitating the training for Resource Parents, formerly called Foster Parents, that need training per the DCFS. It` is not surprising these student populations may have more challenges. A number of young women come back in their late 20's with a baby or two. Owning up to where you are and how you can and will do better if you are willing is what i believe.
I posted this as my NP posted in my notes from the Friday visit that was is back to work. Fully back in person. Since July of 2021 I have spent 2.5 years working from home. Did I do all i could have done to fix up my home? Not really. Cancer care with its drugs and treatments affects you in ways you see in hindsight. Not living with anyone puts no restrictions on my time. I volunteered a whole lot during this time. Being a homebody is not my thing.
I love hearing about husbands and wives her lovingly support their spouses.

Lori, I wanted to update you on my husbands progress of his myelofibrosis. He finished his 2nd round of Vidaza chemo, we went to his monthly checkup appointment with his cancer Doctor at Levine cancer center the doctor was very pleased with the results. He is showing less cancer cells in his blood, in the beginning he had 18 blasts, it is now down to 5. We are prayed for continued good results. He still has to have platelet transfusions twice a week our local oncologist keeps a close watch on this. Since he has no bone marrow, I don’t understand how he will get pass the transfusions. Maybe you can explain more on this.