Aug 15, 2022 – Rather than wake to the sounds of Scott shuffling around at 6:30 a.m. and the smell of freshly brewing coffee, I woke abruptly to the sound that I have been dreading.  The sound of vomiting.  Since I was a child, the sound of vomiting has been extremely disturbing; maybe it is for everyone.  But nothing prepares you for a bowl of green to black liquids; the reality that the medicines they are pumping through his veins are lethal.  You see the nurses handle the triple bagged products while wearing gowns, double gloves and disposable eye glasses; telling signs of the seriousness of what he is taking in. 

Last night I reached a point where I felt comfortable leaving him watch television; figured I would get a little exercise and fresh air.  I headed to the courtyard and phoned a couple friends.  Returning to Seven West, refreshed and baring gifts of Raisin Bran and instant oatmeal, I find the room a flurry of activity.  In the 30-40 minutes I was gone, his temperature had spiked.  Combined with a sore throat and climbing blood pressure they felt cultures and a chest ex-ray were necessary to make sure that his lungs were staying clear.  That led to him nearly passing out and having severe abdominal pains while in ex-ray.  The doctor was called and did an assessment and he went to bed with a few more medications.  All things they claim are very common and part of the process.  As the chemo attacks the cancer it causes different flair ups for each person.  They do consider him orthostatic which means that his blood pressure changes (in his case increases) greatly when he changes positions – stands up – so they label him as a risk for falling and don’t want him moving around without assistance.    

The nurses have been great and mixed in all the seriousness and caring we have managed a few laughs.  As the masked nurse was just doing her handoff this morning, she asked if there was anything else she could do for him and Scott heard something more like was his diaper ok.  Obviously, somewhere in the back of his mind he must be fearing the need to wear a diaper before this is over.  You probably had to be there to appreciate it.  It was a pleasant change from the last 12 or so hours before. 

To help combat the restlessness and feel like I am making a difference, I agreed to take part in a caregiver study while I’m here.  It will consist of taking some surveys and wearing a Fitbit, which I can keep.  They are studying the effects of positive reinforcement for the caregiver as it relates to the patient’s recovery.  One group will basically get the Fitbit and be left alone and the other group will take part in activities.  Guess which one I am hoping for?  I’ll learn more about this tomorrow when they officially get me signed up. 

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. 

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. 

July 19^th – On our return from Canada, Scott took a call from the coordinator from U of M and agreed to another bone marrow biopsy there on Tuesday.  She said that they were working on scheduling his pre-admission testing and would get back with us on Monday.  Hearing nothing, we pulled up MyChart and sure enough he had several things scheduled; including admission to the hospital on August 4th.  Along with being able to research your own diagnosis, you need to be computer savvy too.  EVERYTHING is on-line.    

With my week already filled up with catering commitments, that meant asking sister Kathy for another favor.  She gladly agreed to be his driver.   That worked well because after a disagreement over burnt pancakes, we weren’t talking any way.  That’s a story for another day. 

Rewind to our visit to Mayo Clinic.   They wanted to do their own biopsy because the one done locally showed only 5% blood which was very concerning if accurate.  Option A was to have it done without anesthesia in one hour or Option B – we could stay in Minnesota and have it done in four days.  Knowing we all preferred to head home, he took one for the team and agreed to go with Option A.  Only he can tell the story as it deserves but short story he said NEVER again. After three drills with an ice pick, they had their samples and we were on our way back to the VRBO with a plan to head home in the morning.  Mission accomplished.

So – fast forward.  He shows up for his appointment at U of M only to find that we should have gotten a call with instructions to not eat prior to the procedure.  Sister Kathy, being the hostess that she is, had a spread of snacks available for their 2-hour drive.  There he was again, left with no option but to go forward wide awake again.   I guess it took some sweet talking but according to him, the gal convinced him that she was very good at her job and he would be just fine.  I’m not sure what they ended up giving him for pain but several hours later, he was telling me all about the pretty gal that rubbed his back while another did the drilling.  There was more to the story but I kind of tuned out after it started to feel like I was the third – or fourth wheel in his fantasy procedure.  Still making lemonade out of lemons I guess – but at least we can check that procedure off his list for a while and we didn’t argue tonight because he was passed out by 8:30 p.m. 

On the way home, they stopped at the kids’ cottage and had the rest of their picnic lunch.  Next week we go back for a full day of testing.  Looks like I’ll have to bring my “A” game to make it more memorable than today.    

July 1st – Independence Day had a new meaning this year. I am husband and dog free for a week for the first time since we got married. As Scott showered in preparation for his trip to Batchawana with Mom and Sis, I found myself getting emotional. Not so much that I will miss him over the next few days but because I realize how much I miss the man he was six months ago. I miss our near fairy tale predictable life. Months of his extreme pain and the need to medicate for pain every two hours around the clock has stressed us both. He has had much better days with the Jakafi but is still struggling to learn how to manage his energy and time. While it would be nice to be able to just hang out together as we wait, duty still calls me. His life has come to a skidding halt; but my daily obligations continue and we both struggle with that. Thankfully my days with at my full-time job are numbered. I’m working in a training capacity for another month and officially retiring on August 5th.

I’m glad that it’s working out so that he can go back to his comfort place. He tells me he will enjoy a break from me and sadly I know he means it. More than anything he needs to feel like he can manage – on his own. He needs to get away from the sights and sounds of the farm so he isn’t reminded that he’s not contributing. The break will be a chance for me to recharge before we head into the most challenging thing either of us have ever done. I’ll join him at the cabin at the end of the week for a few days together with Luke and Alli. Hopefully when we get back, we will have an official transplant date and be ready to hit this thing head on – together. More rested and relaxed than we have been in months.

June 25th – Wow – it appears at 15 days have passed since I’ve posted an update. Time flies even when you aren’t having fun! We’ve had no real new news on the transplant other than the insurance has approved the procedure. Which we were expecting but still need to be thankful for. They are currently working with 4 individuals to determine which one will be the best candidate. Still they are estimating another 4-6 weeks before the procedure.

Scott continues to have good and bad days. Still his spirits are very good; most times better than mine.

Monday we went to U of M for a check-up. Dr. Pettit was pleased that his spleen was greatly reduced and that he reported an increased appetite. He did end up getting his first blood transfusion; only one unit with the hopes of increasing his energy level. He also got another EPO injection on Tuesday in Kalamazoo. All that left him extremely tired but by the end of the week feeling a little better.

Tonight we were happy to participate in the celebration of his sister Kathy’s retirement. Tomorrow he will celebrate a belated Father’s Day with his kids while I travel to Ohio to attend my daughter’s Bridal Shower. It feels good to be able to participate in celebratory events like normal people.

June 10th – It’s been a few days so I figure it’s time for an update. Nothing new on the transplant progress. Still clearing the insurance and getting all the doctors to sign off on it. He even has to have the dentist sign a paper that says he’s in good condition for the transplant from a dental angle. He had another EPO injection Tuesday but we haven’t noticed that it’s really done much to help this time. He does tend to overdo it when he does feel well so then it’s hard to tell. He’s gained a couple pounds as we’ve found the new go to ice cream place in Portage. He’s having pain in the evenings again so tonight I’ve having myself a little bonfire and he’s sleeping. Hopefully tomorrow night he’s up to seeing some friends that are visiting the neighborhood this weekend.

A close friend recently lost her husband unexpectedly; only days before he was set to officially retire. When I’m struggling with what’s going on, I try and remind myself that at least I still have him; or do I?

What I have is a shell of the man I know.  He doesn’t think the same or act the same.  He’s argumentative, forgetful and sometimes hurtful.  While everyone is planning for the weekend, I don’t dare get my hopes up.  Chances are that after I work all day, and come home hoping to do something with my husband, he won’t be up to it.  He has the energy to get up at 6 a.m. and go for a walk, do some yardwork and its downhill from there.  If he feels good, then he’s sure to over do it and by the time I’m free from all my obligations, he’s either in pain or just plain exhausted and ready for bed at suppertime.  I know it has to be horrible for him, all the pain and disappointment of not being able to do what you always have done.  But it’s also hard being the one that everything falls on.  Doing everything you have always done, plus what they typically do and then be the caregiver.  Keeping the doctors moving, keeping prescriptions filled, and keeping track of three medical charts.  Knowing that if you mess up the pills and don’t get them refilled in time that his pain is your fault. Then there’s having the alarm go off every two hours 24/7.  Being alone but not.