T Minus and Counting

Up until now my writing has been very emotionally driven.  Writing has helped immensely when I was feeling scared, over-whelmed or frustrated.  The stories just flow out of me and I feel instantly healed or calmed.  Now thankfully I am just bored but feel the need to keep you all informed.

We (I) rushed around like hell on wheels to finish tasks to leave on this journey.  Getting the business situated so that the others can do business for a while without me and getting the house and yard ready to be gone until potentially Thanksgiving.  The refrigerator is empty and the laundry was all done and put away.  Unfortunately, we will be missing out on our first real peach crop.  The little twig we bought on clearance a few years ago at TSC has really outdone herself this year and is has limbs hanging to the ground with beautiful fruit.  Thankfully the neighbor has offered to pick and can some for all of us so they won’t go to waste.  We have so many good people in our midst, keeping an eye on things and helping with all kinds of necessary chores in our absence. 

Scott and I in the Transplant Doctor’s Office on the day of admission to U of M.
Getting a sandwich after having his port installed.

Thursday, or Day T-6 (transplant minus 6) was busy with testing, installation of his Hickman catheter (port) and getting settled into the maize and blue that will be our home for the next 30-45 days.  It’s hard to even imagine being away from home and daily life for a week let alone being confined to a hospital room and a few hallways for a month or more.  Due to the severity of the process, stem cell transplant patients cannot leave the unit and visit other parts of the hospital. Friday, aka T-5 started with chemotherapy at 5 a.m. and was full in introductory visits, lots of blood samples taken and blood transfusions.  Being hindered by the terrible back pain, they wouldn’t let him shower without supervision; so, rather than have him shower with the help of a nurse technician, I stepped up for the job.  He might have been up for it but I wasn’t ready to share my man yet.  Trying not to get myself soaked while making sure he didn’t fall or pull out any of his IV lines was a challenge.  Not every day you are expected to shower, while getting a blood transfusion but we made it work.  Scotts TO DO list for Saturday, T-4, consisted of walking the halls, brushing his teeth, rinsing with medicated mouth wash 4 times a day to limit inevitable mouth sores, using the breathing tool 10 times per hour and taking a shower.  Doesn’t sound like much but it seemed to fill the entire day and he only accomplished half of the list.

He has already been given half the chemotherapy necessary, and has been fortunate enough to have avoided any severe vomiting or diarrhea.  Every day without it is a blessing in my eyes and we are both very thankful for that.  Unfortunately, the side-effects of the opioids necessary to control the bone pain have given him other very uncomfortable troubles.  They are trying multiple products to relieve that with no success but we expect that if nothing else the chemotherapy will turn that around very soon.  In situations like this, something we all take for granted is suddenly a real problem.  All things considered; he’s taking it like a champ. 

I am able to stay in the hospital room with him 24/7.  The small sofa converts to a bed that is probably comparable in width to a twin bed.  Being short in stature helps to make it tolerable.  Having a room across from the nurse’s station makes it a little more difficult to sleep with bells and alarms going off all the time.  Things on my “should have or glad I brought with us” list include a good set of head phones, ear plugs and a small reading lamp.  He isn’t tolerating any noise so listening to music on my computer is a great way to pass time.  Ear plugs to sleep with all the outside the room noises and the reading lamp would be nice for when he’s ready for bed at 9 p.m. and I can’t sleep.  Add to that list would be food that doesn’t smell or make noise when you eat it; for obvious reasons.  And mints or gum since breathing your own breath all day in a mask is not all that pleasant.  Helpful hints for those reading that are finding themselves facing an upcoming hospital event.  The snacks and books are nice and I have even started coloring in my new adult coloring book.  Being forced to slow down is something that will take me a while to adjust to; but I’m willing to learn. 

6 thoughts on “T Minus and Counting

  1. Continued prayers to both of you on your Medical journey, can not imagine what the adjustment has been like. Reading your Blog gives an insight into how life has dramatically changed, but also shows the love and determination you both have to fight this life challenge together. Big hugs and much love.

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  2. Thanks Gerrit. Scott doesn’t always appreciate my willingness to share but my goal is to provide that insight for others that find themselves in a similar situation. I had no clue going into this what it was going to be like. I figure if someone asks a question then probably others are wondering too. I appreciate your feedback.

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  3. So glad you are able to be with him every step of the way. Prayer to you both that you both will come out of this stronger. We think of you both often. Love you both
    Jen and joe

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  4. Are you allowed to leave the room/halls Sheryl (you, not Scott), or is it still like lockdown once you’re in? Don’t forget to give yourself a break occasionally. It is very hard on the caregiver too. It is a tough journey. Prayers and positive thoughts to you both.

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    • Scott can’t leave the 3-4 hallway section of the floor. I can come and go which surprised me. I’m planning on staying for the first 10 days then I need to be home to help with some catering. I’ll get some things done and head back; probably coming home once a week.

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