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 17^th 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. 

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.

June 28^th – Since first being introduced to Scott, I have always referred to him as the tall, skinny and shy sheep farmer. I’m sure pretty sure his first impression of me was the short, plump, loud-mouthed loan officer from Farm Credit. I never imagined myself being attracted to the tall and thin type and he has openly admitted that while his plan was to not look for a second wife at all, he wouldn’t have searched out a vertically challenged woman with lots of cushion either.

Our current situation has weight on the forefront. After eating healthy for most of his adult life, he has often been concerned that my love of cooking and my abilities have led him down a path of unhealthy eating. He’s always said that he didn’t mind that I was heavier than I should be as long as it didn’t lead to health problems; he just wanted a healthy wife. Yet here we are. I’m struggling with stress eating when I would prefer to lose weight for my daughter’s upcoming wedding and the doctor in Kalamazoo is concerned about his low weight going into surgery.

I haven’t figured out how it happened, but deep in our brains, we just have different views of eating. While I had successfully coerced him onto the train of eating for pleasure, his brain has told him to jump off and go back to healthy eating. While shopping recently, he went off to search for groceries for the house while I did some shopping for the store. Knowing that his goal needs to be eating for weight gain, he gleefully returned with a cart full of healthy eating diet food. Low fat yogurt, granola bars and bran cereal. Not kidding! He’s got the green light to eat all the fat he wants and that is what he is honestly hungry for. Give me the green light and I’m running for the real butter, ice cream and spinach dip! So why is it our minds are so different? I am a confessed stress eater and he is craving healthy foods. I’m thinking that maybe a weight loss hypnosis session might be worth a try; maybe for both of us.

What’s totally crazy about this situation is that according to some websites, Scott’s BMI still isn’t at the healthy level; as in he would still need to lose a little weight yet to be consider at a healthy weight. He has very little meat on his bones and his muscle mass has been greatly diminished. I lovingly refer to him now as my Ethiopian man; he’s that thin. I’m not dwelling on it but I could probably lose half my body weight and be just about right for the BMI experts. So, as I plan to tackle the world’s health care problems in my upcoming retirement, I have added righting the BMI charts to that list of things to do.

Disclaimer: This article was written solely for the purpose of entertainment and not intended to solicit unwelcome suggestions about how I can successfully take off weight. I’m sure it will trigger my Facebook feed to be full of weight loss posts but that’s another article. I’m in no state of mind to commit to anything other than seeing him through this right now. My plate is full and I guess that’s what got me here.

June 3rd – We managed a short week at the family cabin in Canada. Zeus had a great time and we almost lost him to Aunt Bea wanting to put him in her suitcase. The weather was beautiful. We read a lot of books, did a little fishing and had great meals with one of his cousins and his wife and Aunt Bea. And a visit wouldn’t be complete without a few visits with family friends that reside there.

It was great to have time with Scott’s cousin as we learned that he had been diagnosed with Essential Thrombocythemia about 10 years ago as well. While both ET an Myelofibrosis are not said to be conditions that are inherited we find it very interesting that they both were diagnosed about the same time and are close in age. In addition the family does have a history of Multiple Myeloma and Leukemia on both sides of the family. Hopefully our experience will help them be more vigilant with his blood count numbers and help them be on the watch for unexplained pain or fatigue. For so long, we just thought that ET was something that required medication and would be something he would just have to live with. Little did we know.

Between the EPO shot and all the rest and relaxation, Scott seems to be doing really good right now. They are working on the insurance approval before they move any further with the donors. They anticipate the transplant to take place in the next 30-60 days.

We are looking to start doing some visits while he’s feeling good. The next 60 days will probably go quickly and we want to see as many people as we can before we have to spend the next 30 + 100 plus days in another world. Tomorrow we will take a trip to see my parents and visit our Grandbaby; she’s growing up so fast. Last year when our financial advisor told us that I was in a position to retire from my job as a agricultural lender; I decided I needed another year to mentally prepare for what I had worked my whole life for. My plans were to help my son and daughter-in-law regularly with day care and pursue my store/catering full-time. Thankfully I didn’t retire last year as I wouldn’t have access to the same health care insurance today that I have now and so desperately need. In addition, laws require employers to offer COBRA insurance for up to 18 months; which will allow us to stay with our current insurance until the end of 2022. Another one of those things that makes you realize that God has had a plan all along. I can’t imagine this journey with a sub-par insurance plan.

May 24th – Scott had his first EPO injection today. It is to stimulate red blood cell production and hopefully give him more energy. In order to get it he had to see Doctor O again. We haven’t heard from him since his appointment back in mid-March; before Mayo Clinic. He was his cancer doctor for 10 years and he never reached out to us at all to find out how Scott was doing or anything. Guess I’m naive to think he might be interested. Needless to say, I wasn’t able to bring myself to go to that appointment; I drove him there but chose to sit in the waiting room. If you can’t say anything nice; don’t go in.

Scott’s had some minor fainting spells; mainly from getting up to quickly. We had quite the excitement the other night. I was down in my office when I heard a terrible crash. I ran up to find him getting up off the floor. I quickly urged him to stay down and wait a minute – with no luck. He attempted to pop back up like some kind of inflatable punching toy. Like it never happened. This time he starts to weave again and I go to grab him to keep him from hitting his head on the coffee table. Only my sudden movement caused him to fall backwards and we landed in a pile on the living room floor. All the while I’m having visions of calling 911 to report that we have fallen and can’t get up. We both ended up with minor cuts and bruises but thankfully no hospital visits were required. I expect to hear this from my parents but not be a party to it myself at the vibrant age of 58! O.k. I know – vibrant and 58 don’t go together. Ugh!

There have been no updates from U of M on the potential donor progress so we will try and head up to the family cabin in Canada for a few days. If we are in Ann Arbor in July we can’t miss a 3rd summer vacation up there. It will be long john and sweater weather but we’re looking forward to seeing the place again.

This post’s photo is of my magic dish. This beautiful dish showed up in the mail around the time of my birthday in March. No card, no clue where it’s from. Just showed up magically. Sunday I made scalloped potatoes and ham; we ate late and hardly put a dent in them. Monday night I came home from work and it was empty and in the sink. I immediately thought we must have left it out on the counter all night. Shoot – must be he threw them out?? Nope – he ate them. ALL of it! Magically like the bowl appeared, his appetite appeared and he ate the whole bowl full! We need to a few more days like that. Dr. O was shocked by his weight loss and said we really need to work on that before he can have a transplant. So I’m off to look for some new recipes to bake in my beautiful magic dish! Have a great week everyone!