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

Good morning! Well, gosh, that’s not the news you wanted with the Jakafi not doing the job. But plan B should get your husband to the point of transplant. ☺️

I’m so happy to hear you found such a nice place to live near the clinic where you can bring your furry baby along! That has to be a huge relief for you. I’m trying to think of other things you might need. My stay was at a hotel so there were a number of extra things I brought along that you won’t need if you have a house.
We drove to Rochester so we weren’t limited with room. Not sure if you’re flying or driving but that might impact what you arrive with.
I’m assuming all the basic amenities are in the house already such as utensils, plates, etc. but bring items that you use on a daily or weekly basis that you won’t have in Rochester at your reach.
Rochester is a nice medium sized city with a lot of grocery stores, restaurants, etc. with delivery!!
So make a list of what you might miss if you’re not home for 3-4 months. Pills for sure, address book, stamps, envelopes, laptops, iPad, phones, chargers, extra prescription glasses. I also tossed in a small extension cord for my hospital stay so I could charge my phone and iPad in my bed.
Bedroom slippers for your husband and pajamas/sweat pants. Something comfortable…trust me. And his own little blanket/throw.
Forward your mail from the post office and sign up for the free service from USPS for previewing your mail so you can see what is being delivered each day if you need to check for bills.
We brought along some favorite food prep knives, some dried herbs/spices from our home so we didn’t have to buy everything new. But there’s a really nice HY-Vee grocery not far from the clinic where you can get everything you need and Fresh Thyme that has really good fish and fresh foods.

You’ll be there from July into the early/later autumn so keep that in mind when packing clothing. Summer is hot and humid in Rochester and then gets chilly in the fall. Raincoats/jackets/caps/hats for trips back and forth to the clinic on nasty days.
If you drive to the clinic daily, you’ll be able to duck into a tunnel system from most parking ramps so that’s out of the elements.

Getting to the nitty gritty. Your husband will be seriously immuno-compromised after the transplant and will need to be in as clean of an environment as possible.

He will have several educational classes before transplant to help guide you both about foods to eat, food prep and handling, and also a safe living environment.
He’ll be wearing a mask all the time for several months! With a dog, he may have to limit petting. But keep sanitizer handy.
When you move in:
Bring sanitizing wipes and hand sanitizer to get you started, then make sure they’re on your shopping list.
What I would suggest, even though the house will no doubt been cleaned, is to disinfect all the horizontal surfaces again, such as doorknobs, remotes, light switches, countertops, refrigerator and microwave door handles, bathroom…

Take all the dishes from the cabinets and put through the dishwasher again so that you know it’s been done.
I brought a supply of our own dish cloths and towels from home. I’m really picky and felt I had a level of control of cleanliness. I also brought our own facial wash cloths.

A suggestion to bring a Brita water pitcher/filters. Rochester’s water is fine, just heavily chlorinated and I didn’t like the taste.

Is this a 1 or 2 bathroom house? If you’re sharing (or not) the bathroom with your husband during his recovery, it needs to be squeaky clean. And he should not be cleaning it at this time. It’s good to purchase a new toilet brush and Clorox bowl cleaner and keep the Lysol wipes handy for touch ups.

Molds and fungus are problematic for newly transplanted patients so make sure the shower curtain is free of mold.

I know I tossed a lot at you on general information.

Do you have any specific questions?

Hi Lori, Just wanted to update re: husband's upcoming BMT. He is scheduled for a splenectomy in 2 weeks as the Jakafi has not continued to shrink his spleen as hoped. We are hoping this is a successful surgery with minimal complications. After recovery, the BMT is scheduled to occur probably in July. Luckily I found a small 2 bedroom house, reasonably priced, to rent near the clinic with a fenced in yard for our dog. I know that you had offered to provide a list of items that would be helpful for this move. Any other tips or suggestions? Thank you!

@tml I echo what @loribmt and @rosemarya have already said to you. I get labwork every month at the cancer center, and actually have made a spreadsheet to look at my results side-by-side. They are numbers on a page. The dr is the one who ties them all together as it relates to my medication and well-being. Like Lori, I do know what the numbers mean, but there are nuances that can make things vary. Focus instead on how you feel. You promised yourself to not dwell on the numbers, and you are waiting for the results of the tests as it relates to your multiple myeloma!

What have you found today to be joyful and grateful for?
Ginger

Hello @tml From experience, looking at blood numbers can really ramp up the anxiety. I can’t tell you how many times I’d look at my numbers, ( I do know what they mean) and I’d still be a little freaked out. Then my doctor would wave his hand and say ‘That’s a non-issue. Those numbers are fine considering the medication you’re on. They’ll reverse. “

Especially when we’re going through treatments, the chemistry of our bodies can be affected by the medications with large fluctuations in numbers. Some numbers such as LDH can become elevated either with tissue damage occurring OR simply showing the aftermath of cell damage which could even be cancer cells being flushed out. I’m not saying that’s what’s happening in your case. Just letting you know a scenario that, when taken out of context, you won’t understand the numbers.
Anyway, it’s not unusual when you’re on strong medications, and certainly if your system is being flushed, to have all your blood numbers skewed. I’m not sure how meaningful any of that would be at this point. Doctors will want a CBC to make sure your liver and kidneys are functioning and not taking a hit.
It’s in your best interest to not be giving yourself even more anxiety over these numbers. Remember you weren’t going to look! ☺️
Are you still feeling fairly well during treatment?

Thanks for that hug. I need it!!!

They never used to give me the CBC so guess I was blissfully unaware if they were off. I have nothing to compare it to but last week and this week. I guess because I asked one time to compare to an ER visit they now provide them.

I see her in April 7th and will also get my myeloma labs done that day although usually a few days before they post. I now live in fear of looking at them. My first round I did not care much since but since relapse with no real remission, I have become more aware!

@tml, I’m sending a virtual hug. It is so worrisome when handed a set of lab results without any explanation. In my situation, for years the GI nurse would make a comment on my labs: “they are high today” And, luckily, my doctor would look at them, shrug, and say, “Of course they’re high. You have liver disease, they’re supposed to be high.” I felt better.
I hope that you will get more than formation from the doctor. When do you see him again?

Said I would not look but they gave me my bloodwork numbers and the highs are all higher and the lowers even lower. Not sure if caused by more drugs impacting or not having the effect hoping for…hmmm. Always more questions than answers. Did not compare until I got home so have not asked. Of course just saw a nurse today so perhaps not answerable there.

Just got some Activa 15-20 mm which think will wear from time to time. Had some from the hospital in 2017 which are more the sleeve type. Have two heavier travel ones that I bought to use in flights for travel. Guess think another way if preventing a problem. Loved your Wizard of Oz reference! I seem to have lost all my patience! It is great to read other stories! Guess her husband’s chemo does color her outlook. And true, hard to say how it will be for me. I guess now that I am looking forward I am too impatient!!! Will have to try and live in the moment! Not easy for me!