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

Good morning, @soonerfan, here are a few informational sites I tossed in for you to give you a head start on prepping for a transplant later this summer:

~How soon does one secure lodging for 3 month stay in Rochester
https://connect.mayoclinic.org/discussion/how-soon-does-one-secure-l9dging-for-a-3-month-stay-mayo-rochester/
~Long-term lodging options in Rochester while in cancer treatment https://connect.mayoclinic.org/discussion/long-term-lodging-options/
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A couple of my go-to guides for instructions on stem cell transplants for caregivers and patients with sections on what to pack, avoiding infections and after care.

The first is from Mayo for caregivers and patients.
You’ll be having an autologous transplant so disregard the allogenic information.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
This is from Memorial Sloan Kettering.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
Other things to consider for long term stay:

Essential items you use on a frequent basis at home Your lodging will be your home away from home but sparsely furnished. It’s nice to have some of your favorites with you.

>Mail~USPS will hold mail up to 30 days. Consider having mail forwarded to your lodging. If your mail is held, sign up for free USPS service of previewing the mail. You can see what’s being delivered/held that day to see if you’re missing anything important. Amazon can find you too!

Most helpful to bring:
>Laptop/tablet/smartphone (+ chargers)
Your phone or device will be your connection with the Mayo patient portal and communication with your team. It allows you to review your lab results, appointments and information. It’s also your window to the world while your mobility is limited.

>Small electrical extension cord for charging your phone/tablet while in the hospital room.

> A thermometer. You’ll want to be able to check your temperature daily for sign of infection.
>All medications, spare eye-glasses if needed, personal items for grooming, etc.

>Stamps, envelopes, address book. Post it notes came in handy, along with tape, a tiny stapler, pens, scissors. etc.
>Small sewing kit
>Inexpensive collapsable (fabric) hanging organizers for closets~good for t-shirts, pants & supplies.
>A flat storage bin for under the bed work for extra supplies.
>Quarters for laundry machines (detergent, dryer sheets, color catcher sheets for small loads)


Clothing:
>Slippers or shoes you can wear in the hospital
>A favorite blanket or pillow
>Depending on your length of stay, you might cross seasons. So bring clothes you can layer.
>lounging clothes for comfort
>looser fitting tops to accommodate the chest port or picc line in the arm.

>lysol wipes to wipe down all horizontal surfaces in living quarters, along toilet seats & flusher handle, door knobs, remotes, light switches, etc.
>if staying in a furnished room/apartment, place all dishes and flatware in the dishwasher on a sanitize setting just to make sure they’re clean.

>As the patient you should not clean your own toilet. But we found it helpful to buy a new toilet brush and cleaner at the grocery store so my husband could do a scrub between housekeeping visits.

These are just a few ideas to get your brain wired for the adventure ahead!

Home at my caregivers the first night. I would love to hear others 1st night out of the hospital. 23 days. My picture is myself and my transporter. She packed the wheel chair with all my luggage to meet my caregiver who just arrived. I toted a large suitcase.
I woke up last night at mid/4am. Usual vital & nurse checks. Crazy. My 1st clinic visit is 4:40pm today. Twice a week for a while. The journey will continue as I build up days.

I have blood work every week right now. Finishing up my first session/set.
Thank you so much for you insight on what’s happening. I’ve read some of the other posts, made me LOL when they were talking about storm troopers and minions going in to do the job. I did have it worked up in my mind about what and how this transplant was going to go down.
So I am a lot more at ease now. Thank you so much.

Well, my doctor just posted the letter to my work today. Although i had wanted to work from home, I had no idea it would be till May of 2025. Geez. I will miss a convention i usually attend in early November and retreat i am on the board for in mid-March. This bone marrow transplant is not for the weak. My sister reminded my 2 cats will be glad i m home. Vacuuming daily and brushing them daily. I was home working a year with my breast cancer and surgeries in 2021 and 2022. My supervisor will be sad. I will miss the students who will graduate by the time i get back.

Good morning, @soonerfan. Just checking in to see how you’re doing. Did you finish your first round of treatment?

Hi Kat. I was retired at the time of my transplant so returning to the workplace wasn’t on my radar. I remember thinking around the 6 month point that if I were working full time it would have been a challenge because of the fatigue at the end of the day. I’d feel like a puppy with bursts of energy. Then I’d overdo because I felt so amazingly healthy. Paid for it the next couple of days with fatigue…two steps forward, three back. This takes time to recover…not a race, it’s a marathon. But don’t go canceling plans for that March retreat to hastily.
Perhaps if you’re feeling up to the challenge in 6 months you can start working from home?

You’re right, bone marrow transplants aren’t for sissies. 😉 But you’re doing great and have the right stuff to keep pushing forward! You’ll feel like Wonder Woman when you’re past the worst of this. The first 2 months were the most difficult. You’re moving right along, so hang in there!

Lori,
Thank you for replying. At my work, I do not have disability. Following my cancer diagnosis, I added it a year or so ago through a plan that lets us add specialty coverage. It is not full coverage, but it was just in case. I did not get the extra cancer policy when i could a few years go. I need to wait a few years.
I am going to work from home whether it is all day or a number of hours. I have many appointments over the next number of months, and I want my sick hours to be used for a while. It will just be working it out with my office.
Just seeing what i can do, I need to meet with my HR/Diversity director first. This takes time is so right.......I am going outside to take small walks. Sitting outside for fresh air. Simply reading more. My caregiver's house is not mine. That is still a big adjustment.
Tomorrow is my 30-day bone marrow biopsy. Looking forward to the truth it will tell. My 3rd of many BMB.

Hi @clareaq I know this is all very and abrupt for you. You weren’t anticipating having a bone marrow transplant (stem cell transplant). Having yours at this earlier stage in your blood condition, before there is a progressive situation, is a good thing.

There is a ton of information from myself and other members that will help you through all of the unfamiliar territory. You’ll be learning quite a bit at your meeting with the transplant team and I’m sure it will feel overwhelming! Never fear, I’m here to help clarify things for you. There is no question too large or too small!

Each clinic has its own protocol but generally you’ll need to have a dedicated caregiver 24/7 for about 100 days and to remain within 30 minutes of the clinic for the same 100 days. Some clinics have transplants as an outpatient procedure while others require a several weeks as an in-patient before being released to a recovery location.

Do you know if you’ll be having a transplant using your own cells or will you be required to have a donor’s cells?

Thank you for your quick reply Lori! I will be having an Allogenic transplant. I will be unable to use my siblings because of age and disease. I am 62 years old. My doctor says I am young and in good health (which I chuckled at) and makes me a good candidate for the transplant. She assures me that they look all over the world to find the best match and one will be found. My hemoglobin is very low which makes my love of gardening difficult but I still go out to the garden every day to do something. It makes me feel better. Knowing I will be unable to garden for a few months is disappointing but of course worth it.

I have finished my first round. On to the first session of the second round. Looking for positive light chains today.( well lower anyways)😊. I started feeling a little more human. In fact felt great Monday!
Hey on a side note did/does any one have the finger and toe tingles with their chemo? My feet and ankles swelled up, kinda scared me. Started wearing my sexy compression socks. LOL!
Thank you for checking on me.