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

Thanks Wendy! I was feelin’ the love. It worked; All the labs and test results had us happy dancing!! 💃 Just waiting for one more set of results but my doctor isn’t anticipating anything unexpected. As a sign for how well things are going, I don’t even need blood work for 6 months! That’s huge! 🥰 That’s my longest leash yet!
Thank you again for your sweet well wishes. I hope and pray that you’ll find some answers soon so you start feeling better. Hugs!

Hi all, 4th infusion. Zofran byvthem and 2 senna laxatives for me!!!
My nurse called early, so I got in and done on time. She was training a new nurse. Very new and nervous. It did take away from me the patient, but training needs to happen.
I did stop at the help area in the hospital. Asked her if I leave my stuff down with her. I also asked if people bring a lot. She said they do!!! Some bring one small, others bring 2 or 3. Crazy.
I am packing tonight.

Praying and sending light for all clean 🙏 ✨️ ❤️

You're the best Lori! We're all behind you and are grateful to have you as a volunteer here 🫂 🤗 😘

Lori,

I hope all goes well. Those are a lot of appointments. I expect for you it is a test at a time.
I got my infusion at 6:30pm. I sent 2 messages to my dr in the portal. The head nurse did not know exactly, An approval or some other reason. She gave me a $25.00 gas card to say sorry.
My nurse said to get a twin memory foam to make my bed comfy. Cassy from the wig office said bring your own shampoo and conditioner s i will only get baby shampoo. Makeup? Buy a new pencil and shadow. As for my work, I work in an office at a college. I worked from my computer and phone during covid and during cancer treatment.
I hope all of us have a good day. Acceptance.

Hi Kat…I hope your day 4 goes better than yesterday with the infusion. Wonder what the holdup was all about.
It’s good to keep productive with your work. Is it a job that you can do somewhat online to keep in the loop?
I have to scoot. 7 AM appt at Mayo…1st out of 6 appts today.
Hang in there!! You’ve got this. ☺️

My 3rd day did not start well in infusion. I had stopped in the positive image center to show them my wigs. The one I wore after my first chemo she said was very good. The other one she literally said "screams wig". I felt that too, so I never wore it. $200.00 plus. She said the color on the ends of the curls makes it look like a wig. While there the day clinic called for me to come early. I got here at 3:45pm. The problem is it is 6:15pm and I still do not have the chemo. I already sent a message in the portal to my doctor. I am making a list of things to do tonight and tomorrow.
I have been erasing old emails and will know log into work to finish a few responses.
I am looking to get some items done I might have done tomorrow.
Looking to keep calm.
I hope you had the best news today Lori!

Good morning! Two down and three to go, huh? I was going to suggest Zofran or one of the other meds, ‘just in case’. I was all cocky the first two days and then by day three, there were hints of that lovely feeling. Hopefully you don’t have that. I’m not sure what your chemo is at this point. Different protocol/different clinic. So you may not have the side effects. If you do, just remember, it’s not forever. Small comfort when you’re in the middle of feeling like crud. 😉

I suppressed a chuckle when you mentioned bowel movements. That seems to be the huge topic of discussion when you’re having a transplant…Every day i was asked over and over. LOL. Sometimes I answered with a bit of humor like; ‘all the friends were holding hands and jumped in the pool singing kumbaya”. And other days, “Friends decided to stay in for the day”. Or, “Everyone is running off the cliff like lava is chasing them” 😂.

I’m actually on my way to Rochester today for my 5 year post-transplant visit!! My official SCT date is near the end of June but this is a big milestone so I’m excited to check in with my transplant doctor and team tomorrow!! Good luck as you enter day three!

Lori,
I had the Hickmann for nearly 2 years with Breast cancer. It was wonderful.
I think the pic line is interesting, but it does require keeping it clean and dry.
2nd day down, I did get the Zofran just to not chance nausea. Today I am taking my senna laxative. Something i have only used through cancer treatment. Bowel movements are something they ask about, so I have learned that noone is going to know if I do not tell.

Great to hear from you! I’m glad your first days are out of the way. Getting the picc line is interesting, isn’t it? I had those for all of my AML chemo treatments but had a Hickmann port for the transplant. Either way, nice to not have so many pokes with all of the blood draws coming from the ports.
It’s also reassuring for you to learn that this was the perfect time to be going through this journey! Wishing you well as you continue along!! Hugs.

I had my 1st chemo yesterday. Labs first. Many tubes as they Needed many for the research study i am in. I got a "take home" fecal test. On demand I could not do that, so i am bringing it back today before my next chemo.
The dr. seems very excited for my journey. He wanted to know again how it was I got to him? I gave hime the story that a wonderful NP I had with me my whole journey went on pregnancy and did not come back. I said i was seeing her in August and wanted to cover the blood numbers. She would tell the new Medical Oncologist I was assigned to and never met. Mine went to Cedars Sinai. I told him i was bothered, so I contacted the DR's office i saw about my blood clot. Threw the COH patient portal i requested an appointment and after about 3 exchanges and phone calls, I got the person on the phone who made the calls and got approval to put in the request to see the hematologist. That is how i arrived in the Dr's office in late September 2023.
Advocating for ourselves. I must say parts of myself yesterday thought this is real. As the Dr scrolled through my numbers and diagnosis, he said i am here at the right time. If i did not do this transplant I would continue to have blood numbers flip around, little by little all that is going on now would decline. I would say I am on the cusp. This may just cure me. I met a young woman half my age who had some bad side aches last July. Had a surgery to supposedly solve the pain, but she got another test and was found though that she had leukemia. What she said? I did not ask her name. But i mentioned her to the DR. and he said her name is Alexa. Her family has 2 people with leukemia, so it is possible it is genetic. I felt so blessed to meet her, she is 3 weeks past transplant and is staying at the hotel local to COH. She said she left the transplant area at the hospital as her body was accepting the new cells and she was feeling great.
Today is my second day. I got the pic line in, and Dennis and Oliver completed the job. My father and brother are named Dennis. Both of these fellows were excellent and explain as they went using the monitor to show the needle into the vein, and confirming the sounds i was hearing was my blood swishing through the vein. Oliver said i was very in tune to the moment to hear the sound and know. Many say nothing as they complete the procedure.
The infusion nurse? She is in the Freedom Day hospital. That area is next to the infusion area I used during my chemo and treatments in 2021 and 2022. It had been for kids with cancer, but it was being renovated for some of the time as i remembered. Now it is the place bone marrow transplant patients get their infusions. One patient had finished the series and the bell was rung for him. All nurses were cheering. I think i head him say it was his 2nd time here.
My nurse was delightful. She confirmed that the Dr. was right about my 5 days if chemo. No heavy nausea has been reported by her patients. Fatigue and for some bowel issues. BUT, the 2nd one dose of chemo will cause hair loss. Yep, I had about 1.5 hours thinking I would not lose my hair. I had already stopped at the Positive image center to ask how much notice they need to cut my hair. I asked Mayra there if she would show me how to style my curly wig. I said I never wore it as I thought my initial move from long hair for 40 years to short hair was too much of a shock in November of 2023. This wig was too much. I had another short one i wore. I attended a convention wearing that wig and a number of people said they loved my new hair style. I think it is important to talk about this subject. For cancer patients and those who face the loss of their hair, my hope is their hospital or treatment facility has a department that address this and assists. The COH has one, that had been in a small room in the women's center in 2021 when i got my hair cut there. It did move into a wing of the hospital being renovated. A beautiful set of rooms I will post a picture of later.
I woke up today having cereal and coffee. Next is a lot more water.