Aug 31, 2022 – After posting the Hallmark version of my report, I think it’s necessary to add some meat to my potatoes and tell “the rest of the story” for my readers that are coming here to gain insight on how to cope when faced with the realities of cancer.
There have been no pictures lately because the sore on his nose is nasty; large enough that you fear a gremlin will crawl out of it. I’m concerned that it too might be cancerous but we have them look at it each day and they still think it will heal up. It doesn’t help that the mask rubs right on it when he has to wear one. I am supposed to mask at all times, even in the room with him but he is able to wear his only in the halls and when the doctors are in the room.
They’ve been able to get him off the morphine which seems to have been the cause of most his involuntary movements, being half awake and half asleep and talking in his sleep. He’s able to do much better with just the long acting Oxy but during the days of severe mucositis (tons of phlegm causing the mouth sores) he had to have some short acting Oxy added back. They were concerned that with his bones being so scarred that there was only room for 5% blood flow, that the pain could possibly continue after the transplant but he has not had any bone pain since transplant day. That part was an immediate improvement.
Another issue that I have also talked with others about is the patient’s heightened sense of taste and smell. Along with not thinking that anything tasted good after the transplant, Scott suffered the inability to tolerate the sounds of anyone eating or the smell of food. This started while we were still at home. When you cook for a living and eating out together has been an important part of your relationship, it’s really depressing when you find yourself unable to cook or eat in your own home. I had a couple people tell me that for them it meant taking their food into the bathroom to eat so the patient didn’t smell or see it. It sounds trivial but it makes you cry.
It is certainly a challenge to walk the halls and see each person on the ward dealing with their own version of hell. The couple we met about ten days ago is struggling. Lots of signs posted on his door made us concerned. Thankfully his wife saw us out walking last and came out to talk to us. He is not able to eat at all and like several people in the ward is suffering with C-diff. A bacterium that happens to hospital patients and is very contagious. Scott was flagged suspicious at one point but was thankfully cleared. After seeing Scott in the halls doing so well, “Steve” was feeling down with his progress but we were able to assure his wife that Scott too has had his problems throughout the journey. I was trying really hard to “cheerlead” Scott and he shut me down by asking me not to brag him up; that everyone here is trying their best; they are all superstars. Saying the right thing at the right time is an impossible challenge right now.
Scott comments that at least I don’t have to feel the pain and agony of the cancer and its side-effects and that I need to cut him some slack. In my mind, I’m just trying to make sure he does what they are asking him to do. One can’t understand what the patient feels, but being on the side-lines unable to fix it is equally difficult. He can have pain medications and drugs to help him sleep through it while you sit and watch; helpless. You find yourself waking up when the nurses come in to hear what they are seeing or finding. If you choose to take some sleep aids, then that’s the time that you find yourself needed during the night and you are too groggy. Thankfully, the mind and body are wonderful things. We wake each morning with new issues or challenges but luckily the pain and suffering of the days before are already fading.
Well, it’s update time again. Hoping that today will be lucky; Day 13 after transplant.
The last methotrexate (chemo drug) treatment was two days ago. Side effects of the Granix shots seem to be lessening a little. Granix is given to help with the production of new white blood cells that ward off infections. The sore on his nose looks to be clearing up a little. He’s back to walking after taking a couple days off. While he was holding on to the fact that his father never lost any hair with chemo, the nurse on Day 10 told him it was pretty much unavoidable with this regiment. Sure enough; the next day, he started to see evidence of hair on the pillow. That was an easily fixed with the hair clippers. Not a big deal since he’s had a buzz cut the last few summers any way. He’s hanging on to the shortened mustache and who knows what it will take to tame those eyebrows; guess we will find out.
He hasn’t lost his sense of humor; while we were out on a walk after I got back last night, we stopped at the window seats. I noticed something that looked like a tuft of hair; his hair. I commented – if I didn’t know better, I would say that’s your hair on the floor over there. He grinned and said “it is – I left it there as a present”. Guess we will see how good the cleaning crew is here.
He’s still getting blood transfusions and platelets almost daily to keep his hemoglobin over 7 and platelets over 10. His white counts were finally on the board today at .3 so that’s a good sign. Things are as they expect to be; it’s just a long process. Rome wasn’t built in a day so we continue to try and be patient as he works through the side-effect of the day.
Sunday, I had training on Chester the port dummy. I’ve graduated to wrapping Scott’s Hickman site and lines before he showers and I changed his dressing with assistance once. Before we leave I will have to learn how to give him the magnesium IV and flush the lines and change them. Never saw all that coming, if we’ve learned anything along the way it’s when you have to – you just do.
August 23, 2022 – When we got married at the farm on the hottest day of the year; we never imagined ourselves celebrating our 8th anniversary here. Chilling out in the air-conditioned comfort of Mott Children’s Hospital complete with room service; a room on the 7th floor with a view. Today is Day +6 (post-stem cell transplant) for Scott. He’s no longer taking long-acting morphine or short acting oxy; his need for pain medication has been greatly reduced already.
For those following to learn more about the transplant process, he had his days of nausea and is still working through off and on intestinal issues. My greatest fear was having several days of vomiting to witness but they have so many potions to tackle the nausea that he didn’t have to suffer that way for long. Medications have given him high blood pressure and he is seeing a change in his eye sight so we had to invest in a different pair of readers. He’s been up and walking regularly and his appetite is slowly improving as his sore throat lessens. This morning he received another gift of platelets. Insomnia is a problem most nights so then some days he can’t stay awake to finish a conversation.
We’ve talked to others in the halls and even if they are here for BMT it sounds like everyone has a slightly different story and regiment. Others have taken chemo before coming here while Scott didn’t receive any until he was admitted here. The number of days of chemo also varies depending on the type of cancer. Scott is up and dressed each day and walks a lot; something fellow bloggers have indicated they felt was key in getting sprung from here early.
For me, retirement from my full-time job less than a week before transplant day has allowed me to spend almost all my time here. I stayed for the first ten days before taking a break and going home for a day and good nights sleep. Being with him 24/7 has been very helpful in a few ways. While you can summons a nurse with your call button, usually issues are more time sensitive than the average turn-around time is. Managing a tree of IV’s plugged into an electrical outlet makes urgent trips to the bathroom a bit tricky. I have a power strip on my list of things to bring back with me. That will allow him to go to the bathroom without having to unplug before taking off.
Even when he’s not feeling chatty, he says the companionship has helped pass the time. There’s a noticeable difference in the patients that have full-time visitors and those that don’t. Walking the halls, it’s difficult to see the sadness in the eyes of those that are always alone; and their bodies seem to sink into the bed. So even if your loved one has to work remotely; we certainly recommend having someone stay if you can manage it. As the caregiver, you feel like a third wheel when your patient has scheduled procedures and activities; it’s hard to know where you fit in. But when the door closes and the nurses leave you are there to help out when needed. Think of yourself like training wheels, your patient needs that extra stability you provide to feel safe after transplant. Here the window seat converts into a bed that is probably more comfortable than the hospital bed and I’m able to use the same rest room and shower as Scott. The nurses have been very appreciative of the extra eyes and ears I provide. It feels awkward at first but you will get into a comfortable routine in no time.
Sitting right on the 100-mile limit from the transplant center, we are looking for housing for the next few weeks. Nailing down the perfect place has been a challenge since we don’t know exactly when he will be released. We will have to book a hotel in Ann Arbor for a few days once we know when he will be released. Yesterday, I secured a walk-out lower- level duplex style home in Dexter for most of September. Looking for housing whether it’s a hotel or a VRBO or Airbnb house, is challenging in the Ann Arbor area during football season; most places are booked on the weekends and rates are higher as well. We decided against pursuing an apartment as after application fees and minimum lease requirements, we determined it would end up being more expensive than the other options and require us to move furniture and cookware.
Scott is heading out for a walk with Zeke in P. T. so I think I’ll go peruse the gift shop in search of an anniversary present. He mentioned that he would like a U of M coffee mug. I might be able to manage that. We have some food-gift cards so maybe we can do delivery or a Grub Hub to put some flair on our menu tonight since we have no choice but to dine in. What I would really enjoy would be a much-needed pedicure; if I can fit it into my busy schedule. It’s been years since I’ve treated myself to one and I think I’ve earned it. Happy Anniversary to me!
It’s been a challenge for them to find the right balance of pain medicines so that Scott’s comfortable but not too loopy. He’s seeing and hearing things and that’s kept him up at night. He’s been providing us all with a good deal of entertainment. At one point the room was flooding with water and I needed to run and get some towels, or better yet the time it was filling with worms. He got after the cleaning lady for walking through all the cobwebs in the room and not taking care of them. They are trying yet another regiment tonight and our hope is to ward off the boogie man and hopefully he can sleep better. He hasn’t been able to work on the farm since February but he sure has worked a lot of cattle with Steve in his dreams since then.
The pain in his body has retreated a little and now his sore throat is a problem. Also, to be expected; were some temporary (we hope) changes or damage to his taste buds. Nothing tastes good so he won’t eat. We’ve ordered and tossed out everything from chocolate pudding to milk shakes, burgers to baked potatoes. Tonight, I put in an emergency call for Kathy’s chocolate chip cookie bars that have kept him going over the past few weeks.
Left – very careful handling of the frozen stem cells.
Right – when frozen they looked pink. After thawing looked just like thin blood.
The actual transplant took less than an hour and started at 2 p.m. The cells were brought into the room in a storage container similar to what is used to store semen in when artificially inseminating the cattle. That conversation kept Scott busy while nurse Emily prepared the work area. We were told earlier that the hospital requests 2-5 million cells be provided for transplant and our donor provided 4.1 million. I could be wrong but I think each of the two bags contained 1 million cells frozen at 100 degrees below zero. The extra cells remain frozen in case they want to give him more down the road. Once removed from the container they had 15 minutes to infuse them. The nurse manually pushed them through the line with a syringe rather than a machine. She explained the potential side effects but he really had no pain or problems at all during the process; she did a great job. There was a small break in between the two bags to check vitals and follow protocols but it went quickly and efficiently. The preservatives used to keep the cells causes an odor to be released when pushed through the system. A number of smells have been reported but the consensus of our group was that the room and Scott’s breath smelled like creamed corn. Very strange!
It was probably less than an hour later that he felt up to taking a walk around the “block” with the walker. Tonight, we are watching the movie Tombstone for the 3rd or 4th time. We don’t have access to a DVR yet so Yellowstone will have to wait until we get to the next stop. They anticipate a few more difficult days as his remaining blood cells do battle with the new ones. He is receiving a multitude of drugs via IV to combat the side-effects of his part of the process. I anticipate him to get antsy and bored but he probably won’t be up for calls for a few more days. The internet won’t support the picture frame the kids bought or Facetime calls but we can do that as soon as we find the next resting place.
We continue to be so grateful for all the texts and messages of prayer and well wishes over the phone and social media. He’s not out of the woods yet but we have a great team of people here keeping track of his every move and we are very confident that we are in the right place.
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.
Saturday, August 6, 2022 – We have been guarded in releasing the news this week; fearing that if we told, then something would fall apart. A call to Maureen on Thursday confirmed that they had gotten final approval of the stem cell donor and things were full steam ahead.
I find people asking, so what is really wrong? I think of it like this. You know your oil change is over-due but you keep driving; you just can’t fit it into your schedule. Next thing you know, your car is running very poorly. So, you finally go to the dealership and they tell you that while they can change the oil, they can’t guarantee that you haven’t done irreparable damage to the engine. They won’t know that until you get the oil changed and run it a while. Same thing with blood and bone marrow.
What is the process? Our 37-year-old donor from Europe will take a medication to boost his stem cell production. He will go through a procedure much like giving blood or apheresis; they will take it out of one arm, run it through a machine and return the blood back to the donor less the stem cells. The cells will be frozen and transported to U of M. Scott will have the option to contact him after a year.
After a COVID test on Wednesday, he will be admitted Thursday for Day T minus 6. He’ll have a port implanted in his chest. Friday he will begin chemo and that will continue until Tuesday. Wednesday the 17th will be transplant day, or Day Zero. The new stem cells will grow and multiple and flow through the damaged bones. The bone marrow scaring will halt and the new cells will be free of cancer. We hope that the damage can be repaired over time or reduced to a level that he will be able to go forward without all the pain meds.
The 100 days after transplant are most critical so during this time, they want us to live close to U of M. With so many things to consider, we are still weighing our options and waiting for the perfect solution. He will be in the hospital for four to six weeks so we have a little time for things to come together. I will be able to stay in his room at the hospital while he’s there but will likely venture out and check out a couple of the local hotels that offer long-time options when I’m ready for a change of scenery. At this point we don’t think he will be allowed visitors but if that changes we will let people know.
Much like when we prepare for the holidays or vacation, Scott is busying himself cleaning the garage. I’m making lists and checking them twice. Cleaning the refrigerator and organizing the Tupperware drawer. As if it matters. I don’t know if it’s because we want things clean when we return or if we sub-consciously don’t want people to have to clean up after us if something happened and we never came back. Either way, the clock is ticking. Transplant Day minus 11 is drawing to a close and it looks as though the next few days will be jam-packed with preparation. We are feeling confident and realizing that the day after Thanksgiving will also be Scott’s Day 100 is ironic and somehow comforting.
July 31, 2022 – Friday I was able to spend the day at a lake with a good friend. I have made time to be with her on her birthday for several years. According to Facebook, twelve years at least. It was then and there that she took my picture; one of myself that I actually like. On that sunny July day, I was contemplating taking a very big step, one that would change my life forever. This year, the skies were cloudy and the winds were brisk so we stayed inside and just enjoyed each other’s company. Much like that day twelve years ago, I am again preparing to embark on another life changing journey; or at least a serious ride along. This whole situation is so eye-opening in how Scott is the one that is sick but it affects so many people and relationships. In a small way, it’s happening to all of us.
I’m currently reading a book, and the characters in the book are young orphans that have escaped a cruel and evil place and are setting out on what they call an odyssey. According to Webster, an odyssey is a long wandering or voyage usually marked by many changes of fortune. I guess that pretty much makes life itself an odyssey. I think rather than focusing on the fear of what could happen or what could go wrong, I think Scott and I are taking the approach that we are continuing our odyssey together. It sounds mysterious and interesting rather than scary or uncertain.
Saturday we were able to spend time with some great friends; our last get together before we leave for Ann Arbor. There was a certain amount of nervous tension in the air as we all wanted to enjoy the time together but realized that it was the last time we would be all together for a few months. The evening ended with lots of tears and hugs.
It’s our understanding that I will likely be the only visitor allowed while Scott is in the hospital for the estimated 4-6 weeks. His stay will begin with four days of intense chemotherapy, followed by a day of rest, then transplant day which is also called Day zero. It sounds like they expect him to be out of bed and walking the halls regularly each day while hospitalized. Once it’s safe for him to be released from the hospital, we will need to stay near Ann Arbor for approximately another 100 days.
We know there will be difficult days, but we have had a lot of practice with that over the past few months. It’s hard to imagine it being any worse than all the days and nights of excruciating pain that he’s already endured; coupled with the panic and anxiety of not knowing what was causing it. There is just a certain amount of peace knowing what the plan is and that there is a solution. I’m sure we will meet some amazing people throughout this journey, maybe people that will be in our lives for many years to come. We know that there are so many people out there sending us well wishes and prayers. Maybe that is what has given us the peace that we feel today. I’m sure that every day until transplant day or Day Zero will be a roller coaster of emotions, but I think we are ready to step up and be at the front of the line when the park opens.
July 19th – 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.
As the saying goes; all good things must come to an end. Such was true with Scott’s vacation to Canada. Not to say that it was all sunshine and roses, but he had a relaxing time overall and the weather was terrific. I feel like it’s only natural to find that tensions arise when you combine an aging parent and a heavily medicated adult child. Moms will be moms and adult men don’t enjoy being mothered. To some degree, I was almost relieved to see minor issues arise as it made me feel better to know that his frustrations were not limited to dealing with me. Pain and medication change people; even mild-mannered people like Scott.
Along with the great weather, we enjoyed some great fishing. We landed a few large bass, with the largest being just over 7 pounds and at 22 inches. A newborn baby! Everything was catch and release other than the nice size pike. Grama O loves her pike so it was fun to be able to provide her a meal. The kids took a lot of great pictures that will help us remember yet another memorable trip to the cabin. The week before the kids (Luke and Alli) and I arrived gave Scott a chance to spend time with his sister and her family. Reliving childhood memories as he watched his great-niece and nephew play in the river and enjoy the rope swing. Walking the beach with the dogs and fishing with his nephew are things he will always remember.
We received a call Friday on the way home and things are starting to fall into place. They are working on some appointments for Scott at U of M next week in final preparation for the transplant. They proposed a date for admission to the hospital. We should know for sure next week. As much as we want this to happen and start the road to recovery there is still a sense of panic as we – I – start thinking of all that needs to be in place to leave home for an extended period of time. All the things we wanted to get done before we go are suddenly coming due.
Today finds the weather sticky and a bit dreary and Scott is feeling really drained. Looks like a good day for a nap….or two.