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

Hi Lori,
I just got my dates for my Stem Cell transplant at Dana Farber in Boston. I will be having my Central line placed on August 29. I am having it done as an Out Patient procedure. I will get my new stem cells on September 6th. My unrelated donor is 37 year old female with a 10/10 match.
I will be relocating to Boston for a Month and staying at a Homewood Suites with my husband as my care taker. I am excited and scared at the same time.
Any insight you can provide would be greatly appreciated.
Also I remember reading a list you had about what to bring for the month long stay. If you could provide the link it would be helpful.

Thank You
Mary Lou

Lori and all,
We are glad to be in positive numbers today is day 2. As you know transplant day turned into much more of an event than we had hoped. David became terribly nauseated during the transfusion and also had rigors. His nurses were calm and reassuring throughout and they got all the cells in. His symptoms went away after two doses of anti nausea meds and we were sent home.
He slept for 12 hours afterwards but is feeling good. We are concentrating on getting food and fluids and light exertion. Daily visit to station 94 was blissfully uneventful yesterday. We will be back today, then tomorrow be admitted for two days while he receives an intense treatment to help head off GVHD.
Trusting in the science and holding each other close with many friends and family holding us up from afar.

What a saga you gave weathered! I am very moved by your story. Thank you so much for sharing it here. You remind me so vividly of the fierce attachment and love of life that can endure so much. You are indomitable. I salute you.

Good morning! Ooo today’s the big day…that proverbial first day of the rest of David’s second chance at life! Ok, I modified the phrase to make it work. ☺️
I’ll be thinking of you both today. I know this day has been a long time coming and now it’s here. I hope you’ll be less nervous once this day is past.

What a lovely photo of you and your husband! I love putting faces with the people I speak with so often!
At some point, it would be fun if you and your husband put a new photo in this discussion I started a few years ago of moments captured with a photo that wouldn’t exist if not for the gift of transplant.

Snapshots of Hope: Life on the other side of transplant!
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Sending an air-hug and positive vibes for a successful, uneventful day. ☺️

I have multiple myeloma. An incurable cancer. My oncologist used the Mayo protocol for treating my cancer until my body had rejected every chemo drug available. I had instinctively know that my life was …ending, but my husband was in total disbelief when my oncologist made the announcement that there was no more he could do. Even though I had been a patient since my cancer was in the infancy stages, stem cell/bone marrow transplants were never an option. My oncologist had always told me that if I wanted to be referred to another doctor just say the word. I pulled that card out and made my request. I was ultimately referred to Northwestern University Hospital in downtown Chicago and specifically to a Dr Mehta. I was surprised to be able to get an appointment in about two weeks from my request. It was during my initial visit that I was told not only was I a candidate for a transplant, but he intended to use my stem cells! When I returned the next month my procedure was scheduled. I had my first transplant just prior to Thanksgiving 2014. I breezed through it and within two weeks I returned home. I was incredibly weak, but gave thanks for a chance to continue living. The doctor was encouraging when I saw him next, but by January he dropped a bomb: I needed to have another transplant ASAP in order to kill the remaining cancer cells. I was devastated and knew my body had not recovered enough from the initial procedure. It was with great trepidation that I entered the hospital in March of 2015. I truly believed I would never go home again. My transplant, or new birthday, was on St Patrick’s Day. The transplant process itself is not particularly difficult, but your body’s reaction to the high powered chemo given prior can be. These drugs basically killed me as my bone marrow was destroyed and then afterwards I would be given nutrients to rebuild my system. The process is miraculous! I thought I was progressing nicely as I went to sleep on day two or three after the transplant, but then my world turned sideways! When I next woke up I had something threaded down my nose and IV trees surrounded my bed. I didn’t understand what had happened and learned I had been “sleeping” for several days. I was only awake for a few minutes and then slumbered once more. The next time I awakened I discovered that I had no control over my bodily functions . I was entirely too weak to be overly humiliated by this and continued to drift in and out of consciousness for at least a week. I had a wonderful medical team helping me through the next weeks. Yes, I said WEEKS. This hospitalization lasted for two months. My family lived four hours away and my husband was entering his busy season as a farmer, so most of my days passed in solitude. He came once or twice a week for 24-36 hours and then needed to return to our home in West Central Illinois. My progress was painstakingly slow. I had zero strength and moving my body in any way was difficult. It was decided that I would need to go to a special rehab facility once I was released and it took quite some time arranging this. I was finally released to a hospital closer to my home that specialized in the treatment I needed. I had been steadily rehabilitating myself, however. As I lay in bed I flexed my muscles in ways that were strengthening them. I learned to dress myself, sit on the side of the bed, and walk in my room using a walker . I progressed rapidly once in the next program and immediately realized how blessed I was. The other patients in my section of the hospital were suffering from much worse circumstances. I requested to be released after less than a week because I had made enough progress to complete my recovery at home. It was abundantly clear that patients with more serious illnesses needed that bed more than I did. Once home my recovery was slow but steady. Food nauseated me and I ate a steady diet of mashed potatoes and Sierra Mist for at least two months. I had lost over sixty pounds since my transplant but I was far too weak to shop for clothing that fit plus I was restricted from being in public places. I had home health care physical therapy and continued to made steady progress. I did have to resume chemotherapy in order to eradicate the remainder of the cancer in my body but have not had a treatment since January of 2019.
So, here I am! Alive eleven years after my diagnosis with a cancer that typically takes one’s life within five years of diagnosis! Do I continue to bear effects from this treatment? Yes. Of course. I have never been able to regain the strength and stamina I possessed prior to the transplants. I now have to admit that I am in the ELDERLY stage of my life and walk with a walker. But what a BLESSING it is to have been allowed to live at all!
Would I recommend a stem cell transplant to others with this disease? Of course! If your doctor believes you are hearty enough to withstand the process I’d say GO FOR IT!
I am now too old to repeat this process if my cancer resurfaced, but I would definitely go through chemo again.
To those considering a transplant I cannot stress enough that I believe my spiritual connections helped me greatly. I had friends, neighbors, former students and their friends and families, and church prayer chains lifting me in prayer every step of the way.

Lori the first three days were half hour infusions so I just stayed with him. He lets me help with his NY Times puzzles.
Yesterday was longer about four hours so I went out briefly to walk and get warm (the AC gets to me after sitting still for awhile). I don’t like to leave it makes me uneasy. Although the team is great. We have had two primary nurses but a different “practitioner” (PA or NP) every day. All seem very intelligent and competent and friendly. David is lovely with all the staff. I get a bit anxious because his condition is so complex how can they be aware of all the things? So I ask a lot of questions. The responses have all been helpful.
Transplant day Thursday. Keep us in the light.

Wow refarm2. You reminded me that modesty is slowly removed from the fear category and move into acceptance. Your story had an abundance of results most of us would say "no way" would i walk through that. Cancer treatment is not for those who cannot hear the whisper from all saying you can do it. You heard that whisper and Baaaam!!!! Thank you for posting your experience. Hope. I heard and abundance of Hope.