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

Good morning, Dorothy and David! Day 106 and a huge sigh of relief…you’re finally back home! Wasn’t that just the most amazing feeling, pulling up to your house after four and a half months? I’m so thrilled for both of you to be home in time for the holidays in the Northwoods!

It will be interesting returning to the local cancer center today. For me it felt familar but foreign the first couple of visits. So used to the protocol at Mayo and things were just enough different locally to feel strange! David will be a hero of sorts, regaling the tales of his adventure with the staff. 😉
Is David fully off the tacro now?

Thank you both for thee updates!! As i took my walk today i thought that without my surgically changed breasts and my super short hair, I would never know i have been through cancer treatments in abundance since August of 2021. Having a supportive spouse was not in my wheelhouse, but i did have an abundance of kind friends and family who were there for me through all of it. I learned I could walk through anything if I checked myself from the moment my eyes opened in the morning as to my sight, ability to breath and have use of all my body parts.
Some days were just do nothing.
Home. The old saying that is no place like home, rings 100% true returning after a prolonged leave from a transplant.
My hopes for my AML friends her are your medical team staying front and center in treating till you reach stable. NO GVDD God!!!! I know my 1st cancer possibly led to my MDS. My perfect hospital and Dr. gave me an option to stop AML from happening.
This year needs some extra gratitude, thanks and celebration.

Yes he’s been off tacro since the 21 of November.

Good morning all! Thank you @katgob and @loribmt for the invitation to update everybody on our stem cell transplant journey. So nice to hear the progress being made by fellow transplant warriors and your caregivers. Truly, heartwarming after the year we have all endured.

My husband is just about at his six month re-birth anniversary of his allo stem cell transplant for high risk AML at Northwestern in Chicago.
We received wonderful news this week of a second clean biopsy since transplant. Thank God!
He continues monthly chemo (Aza/Ven), is being weaned off Tacro slowly, all labs are stable, eating well, except for some nausea during chemo weeks. The chimerism looks good except the CD3 seems to be trending down, hoping the tacro reduction helps that. They are treating him for mouth thrush and keeping an eye on it for possible GVHD. One other bugaboo is blood clotting…. He is on Twice a day Lovanox shots for a breakthrough clot a couple months ago and he is just now experiencing pain on the other side of his neck, saying it feels like another clot. Docs are aware and we will get it imaged asap if it worsens. 🤦🏻‍♀️
He also has some neuropathy in his toes that a recent MRI of his spine shows is just that, not disease in his spine. Feels like for all his relative stability, he still has a lot of doctoring going on lately.
We are happy to receive this positive news during this holiday season, especially.
We are working on plans to visit Florida in Feb and get his monthly chemo and check ups there. It’s hard to make plans for the future, because of all the uncertainty we have learned to live with. But we are hanging onto hope and allowing ourselves to look a little bit into the near future with this trip.
Along with the myriad struggles, fear of the unknown, anxiety, and emotional pain, I’d say one of the greatest things we’ve gained this year is a true and deep understanding of what it means to live one day at a time. We throw that phrase around a lot in our culture, but we truly live it now and have a much greater understanding of how to do that. It’s the only way to stay centered and relatively calm. We want to cherish every single moment, even the mundane moments, choose joy, practice staying present with each other, our family, and start and finish each day with gratitude for all our blessings. I have always been a faith-filled person, but this experience has deepened my spiritual and faith life. It has also deepened the bond of love and trust between my husband and I, and it is a gift.
We still have rough days and nights, but we are making our way through, trying to hold onto the good stuff as much as possible and let go of what isn’t.
It’s all been worth it. It’s grounded us and our priorities in a way that nothing else could. We like to say we’ve learned to love life just as it is. Appreciate what we have, where we are, who we are with and not wish things were different.

We want to thank and send our appreciation to all of you here who share your stories with us because it gives us encouragement and inspiration to continue on our path.

Sending wishes for a blessed holiday season to you all.

Mary

Oh my post went away!!!! I must start again.

Mary i was so touched by your post. All of it. Six months is a good while. So much is happening each day as our bodies accept and use the refreshed or new immune system. I walk each morning and marvel at the way i feel. Energized. My lungs feel good and i know continued moving is part of the key to change my life at a day at a time. The water i am drinking is also key. Hearing how supportive you are able to be to your husband and the connection you have deepening a day at a time. I love hearing about relationships strengthened through sharing all of lives challenges in all the ways they are presented.
Planning the trip is the best as it gives you something to look forward to. Your body will know that. I love you have a medical team like i and others have. Those transplant teams want success. Helping each of us handle the ups and downs is their job. As always, we must keep them updated on our every day.
I love all you wrote and want to re post this piece:

It’s all been worth it. It’s grounded us and our priorities in a way that nothing else could. We like to say we’ve learned to love life just as it is. Appreciate what we have, where we are, who we are with and not wish things were different.

Beautifully said.
Blessings to the day-to-day march forward and that we find the good times we love about this season and do it!!

Day 249 past transplant. I saw the Dr yesterday. All my blood is good and stable, White cells 3.3. Low. They have been in the 4's for 5 months. He is not worried. I got two more vaccines too; I hesitated a minute before i gave the nurse the Sees chocolate I Had brought for them.
My sister asked if i felt good. I said actually a bit run down. Sort of thought i was getting a cold. My sister said maybe your white cells are off because of that? I just know i skipped wearing a mask a few times. Back in a mask I am.

Hi Kat! Every time you post the Day + for transplant I’m always caught off guard. You remain the poster ‘child’ for how a SCT should go!

Mmm chocolate…maybe if you’d have given the chocolate before the vaccinations it would have gone easier. 😂. I’m sure the treats were a hit though! I usually bring a box of treats for my team too…bribery isn’t beneath me! 😆

You might be fighting something off, like your sister said. That’s a signal to treat yourself to a day of R&R, good book, binge watch something online, nap…

Our blood numbers fluctuate all the time. But if the WBC are down then it’s wise to keep up with the mask. I’ve heard that RSV is making the rounds. So I’ve been wearing my mask all the time again in stores and elevators. Rather be safe than sorry.
Wishing you a lovely upcoming holiday season! Just think, last year around this time you were just considering the daunting process of a SCT. Now that’s behind you and the future is wide open ahead of you! ☺️

Lori, thank you for responding. It is hard to believe I would be leaving for Western NY with the blessing of the Hematology dr. at this time last year. What a year!!!!
Looks like i helped at work today, snuck in. My asst arrived late waiting for the babysitter. OOPS. Our class would not have been ready for the people. I got there prepping at 7:45pm. The bad thing is she had a cold!!! OMG!!! Chicken soup for dinner and bed early. As soon as my sister said that i thought that she may be right. I must wear masks whenever inside. No ifs, ands or buts.
For my Christmas this year i hav2sistersout of town, i lives in NY, a brother i do not see and another brother whose spouse's side of the family loves each other, but not so much our side. I am looking up LA/OC places in California decorated to the hilt. Invite a friend or so not.
About the chocolate, i realized I did not say i thought about keeping them for myself. Selfish.......no bribery for me. A generous spirit re-entered me. And i love the creams and Bordeaux's. Also, i had bought a mixed box of chocolates from See's Candy. That box was for them.

Yes, to the wide open!! I mentioned to the DR i look forward to getting my 1-year bone marrow biopsy. He thought i asked for one. He said we can do one, but no testing will be done. Whoa fella, slowdown. Yes, i was at 248 that day and I need to get to 365 he said. I said I love COH and the PA who does the BMB is wonderful.

Hi Kat, LOL I’ve often had a death grip on the box of chocolates designated for someone else!! Tough to let go…gimme gimme! 😂

It has to feel pretty encouraging being back at work! When was your first day back? Are you full time now or can you hit and miss for a while? Cringing with the news that your assistant had a cold though! I know what a gut punch that can feel like. I have a momentary clench of panic when I encounter someone who’s sick and hadn’t anticipated that scenario. I find myself going through a quick checklist of…did I have my mask on, did I touch my face, rub my eyes?

We were in a grocery store the other morning. It was basically empty so I wasn’t wearing a mask. But I turned down an aisle and there was a group of people standing and chatting…and coughing!! I quietly turned around, put on my mask and avoided that aisle. Problem is, they were standing right in front of an item I needed! 😆 Finished all the other items on the list then circled back and they were gone. But lesson learned, not to let my guard down. Masks really do work!

Sounds like you’re riding solo for the holidays this year. I like your plan of grabbing a friend and hanging out looking at lights! That’s always fun. Our plans to spend the holidays at home in the Northwoods of Wis with our daughter this year got derailed. We drive instead of fly so it’s a 1,250 mile trip (2.5 days) home. On the first day of travel I realized that my nemesis, C-Diff decided to make a visit!! 😳 So the first night we spent at a hotel and then reversed the trip and hightailed it back to our condo in Florida. Called my BMT team and my doctor sent a prescription to our pharmacy there! Meds were waiting for me when we drove into town so, phew…but that means we’re here for the holidays and our daughter is on her own this year. We offered to fly her down here but she was just with us for a week at Thanksgiving. So she’s spending the time with friends, baking cookies and taking in holiday events. She came up with a plan for us making a meal together via FaceTime. Then eating with our computers on the table so we can be a united family. We’ve done that before when I was in isolation with the transplant and some holidays when Covid was prevalent. Anyway, we’re nothing if not adaptable, right?
Always good catching up with you, Kat! You’re always a ray of sunshine! Hugs.

Hi @loribmt !
Geez, I’m sorry to hear about your sudden change in plans! Yes, if we are nothing, we are adaptable and resilient.

I’m sure you are disappointed not to see your daughter over the holidays. That’s a bummer. But I love your plan to cook a meal and eat together over video. It’s a skill we picked up in our house as well. Along with mask wearing and hand washing, that serves us well especially now, they are remnants of Covid times we appreciate.

Do you have a local oncologist in Florida as well in case you need in person care? It’s great that you are able to live your best life part time in Florida, the north woods of Wi and home! But it all takes planning and thought, right?

I sure do hope you are feeling better asap! I know what a pain C Diff can be as my sister who had an auto stem cell transplant (NH Lymphoma) 15 years ago, has flare ups from time to time.

As I wrote this the sun is just starting to brighten the sky and it’s a new day. Hope you and your husband enjoy beautiful sunrises and sunsets over the holidays in those beautiful Florida skies.

Sending healing vibes…
Mary