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

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

Hi Mary! I appreciate your sending the healing vibes and hope to heck they’re stronger than the other vibes I’m getting today! 😂 Just starting day 3 of the Vancomycin and was hoping there would have been more of an improvement to, um, the plumbing issues! I did put in a call to my BMT care team again this morning so we’ll see what’s next on my ‘naughty list’ from Santa. Geez is right.

I don’t have a doctor/oncologist here but there’s a decent hosptial for emergencies and there are several Urgent Care facilities should the need arise. This morning, I’m uncharacteristically unsettled and let a few ‘what ifs’ sneak in. So I’m working on mindfulness to get my brain refocused. I think it was the abrupt change in plans and the added disappointment of missing the usual traditions of the holiday at home with our daughter. There are only the 3 of us, so we’re pretty tight but seldom get to see each other.
AND, of course, the extreme disappointment in having a flare of C-diff when I felt it was all under control. Blargh…

😂What you’re witnessing is my real-life 30 second meltdown. I seriously give myself 30 to 60 seconds to have a hissy fit and then move on. Accept, adapt and move forward is always in the background. But this is the little brown pile of emoji!! Hahaha.

On the other hand, as I joked with my husband, there are worse places than being stuck on the beach for the next few weeks! 😂 So I tossed a string of Christmas lights on the large fake palm tree in our condo. Yesterday I glued string to sea shells and hung those from the plant. We’re rolling with the holidays.

I hope you and Dane have a lovely holiday season. We all have so much for which to be thankful. A few little hiccups are nothing in the grand scheme of things.

🧑🏻‍🎄 Here’s a couple photos of the hardships we’re facing by not being home! 😂😂
The deep white powder! If you didn’t know better you’d swear it was snow, right?
And our “Christmas Palm”. Ho ho ho!

Hi Mary! I appreciate your sending the healing vibes and hope to heck they’re stronger than the other vibes I’m getting today! 😂 Just starting day 3 of the Vancomycin and was hoping there would have been more of an improvement to, um, the plumbing issues! I did put in a call to my BMT care team again this morning so we’ll see what’s next on my ‘naughty list’ from Santa. Geez is right.

I don’t have a doctor/oncologist here but there’s a decent hosptial for emergencies and there are several Urgent Care facilities should the need arise. This morning, I’m uncharacteristically unsettled and let a few ‘what ifs’ sneak in. So I’m working on mindfulness to get my brain refocused. I think it was the abrupt change in plans and the added disappointment of missing the usual traditions of the holiday at home with our daughter. There are only the 3 of us, so we’re pretty tight but seldom get to see each other.
AND, of course, the extreme disappointment in having a flare of C-diff when I felt it was all under control. Blargh…

😂What you’re witnessing is my real-life 30 second meltdown. I seriously give myself 30 to 60 seconds to have a hissy fit and then move on. Accept, adapt and move forward is always in the background. But this is the little brown pile of emoji!! Hahaha.

On the other hand, as I joked with my husband, there are worse places than being stuck on the beach for the next few weeks! 😂 So I tossed a string of Christmas lights on the large fake palm tree in our condo. Yesterday I glued string to sea shells and hung those from the plant. We’re rolling with the holidays.

I hope you and Dane have a lovely holiday season. We all have so much for which to be thankful. A few little hiccups are nothing in the grand scheme of things.

🧑🏻‍🎄 Here’s a couple photos of the hardships we’re facing by not being home! 😂😂
The deep white powder! If you didn’t know better you’d swear it was snow, right?
And our “Christmas Palm”. Ho ho ho!

Hope you are feeling better soon! Being sick and seeing sunshine definitely beats being snowed in and seeing gray everywhere!

I have never had C-diff, but I know it’s a nasty thing. Enjoy your quiet holidays!

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.

caregiverx2- 87 days down. Amazing, isn't it? Oh my. Every medication we come off of does feel good. Kidneys? I still have to drink over 100 oz. of water for my kidneys. My Dr. does not want me to kill my kidneys. The tremors I hope are a result of the tacro. That would be the best result.
The day i got home was the BEST day. My cat had passed away, but Home has made the nearly 4 months heaven. Build in exercise daily. Keep us posted.

My husband is now at day +123. At day 100 they took him off the voriconazole and planned to taper the tacrolimus. But he broke out in a rash and was diagnosed with GVHD grade 2. He was put on steroids, back on the voriconazole, and they increased the tacrolimus. The rash has cleared up. His ANC dropped back down under 1 again so he had to go back on another medicine. So, instead of taking less drugs, he is taking more now. We see the doctor tomorrow to reassess his plan of care.

Hi @caregiverx2, I know this feels a step back in your husband’s recovery, but it’s not! He’s still very early in the transplant journey and gvhd is not unexpected. Even if we have a very close match with our donors, there can still be instances of gvhd. In fact, it’s important to have some level of recognition from our newly implanted cells that they are in control.
In the early months post transplant, the new cells are still getting used to the body where they’ve taken up lodging. They are basically on high alert in this new neighborhood. It can take many months, sometimes years for the cells to recognize and adapt to the many proteins it finds roaming about. It takes time for them to realize they are not all threats that need to be attacked. Until that happens there can be little flare-ups of gvhd, such as the skin rash.

Those little flares get tamped down with a quick snuff of steroids. Or, in the case of your husband, the tacro level is also ramped up to a safe, sustaining level again. This suppresses the over-eager cells until they can temper their assertiveness. 😅 A time out! If it’s any consolation, I was actually on Tacro for 2.5 years. I had a perfect match but “the force was strong with this one” and needed extra time for my new immune system and my body to learn to play well together!
No two of us are alike so we all have our own personal journey along the BMT trail. But we share similarities so it’s good that you brought this out in the forum to talk about.

How’s your husband been feeling otherwise? Is he gaining weight, strength, stamina?

He is doing okay. His stamina and strength are slowing improving but he is having a hard time maintaining or gaining weight. The steroids also send his blood sugar sky high so he exercises/walks to try to get it down. It is a bad news/good news situation, but it still takes a toll on him.