Posted first on April 19th

Some days you just have to really look to find the bright side.   You have to decide to celebrate the simple things; like getting the wood stove going with no kindling because you still need heat and it’s the middle of April.  For some, just having a bowel movement is enough to call it a good day.  I own a store; and I seem to be getting my fill of vendors and suppliers that don’t have products, try to pawn off their short-dated products on me or don’t bother to show up at all.  Prices are climbing rapidly.  You listen to people complain about their problems and you really just want to tell them what REAL problems are like.  You also notice that we live in a society where we continuously ask each other as a way of greeting – “How you doing?”  or “How’s your day going” and respond with “good” or “great” but think to yourself that your response couldn’t be further from the truth.  Lately it’s more like “I’m one step away from losing my shit on somebody but thanks for asking.”  😊  I continue to be amazed by the workings of our health care system.  I tried to renew Scott’s pills on Friday but was denied because it was too early; it didn’t run out until mid-Monday.  BUT they also have a rule that you have to allow them 48 hours to fill a script and the pharmacy isn’t open on Sunday.  I was told to send it back through on Monday morning and they would take care of it; but of course that didn’t happen.  I was finally able to pick it up today around 5 p.m. but after 24 hours on Tylenol rather than the script he was miserable all day.   Thankfully he still had his other pills but even going without one script right now is a problem.  Managing multiple scripts with 10-day refills and making sure he takes something or another every two hours 24 hours a day requires a spreadsheet.  Currently he takes at least 45 pills a day; more if he’s having a pain day.  What do people do that don’t know Excel?  But seriously, I think I’m going to start a campaign for prescription reform; this is totally ridiculous.   How many people are dying because of our existing laws?  How many suicides take place because people are honestly in pain and suffering and don’t feel heard or cared for?  Because they forgot their password or log-in for the tenth time and can’t manage the technology required to navigate the health care system.  Then add to that the fact that all health care facilities are over-booked and health care workers are over-worked.  It’s all the time spent dealing with red tape that prevents them from actually practicing medicine.   If I didn’t already have enough projects I wanted to pursue in my retirement, I now see a couple more causes I could make part of my next chapter.   Right now, I write to keep from imploding and regain focus so I can be the caregiver Scott needs me to be right now.   I apologize for the splattering!  I need to remember to be thankful for insurance and appreciate that we are enjoying a warm home because I did get the fire started. 

Post-script: Two days after this post, I went out to start the woodstove and found that someone had snuck in our drive and deposited a large amount of kindling in our woodstove shed. Miracles continue.

April 21st – Today we met with the transplant staff at U of M. Scott had his blood work done for typing. His siblings will be tested and have a 25% chance of being a match. Fortunately, Scott has four siblings. Brother Dan had his done while we were there today. They will also be checking the International data base. It will be done as a stem cell transplant rather than a bone marrow transplant, which sounds like that’s most common now and easier on the donor. Stem cells can be harvested and frozen for transport and the process is much less invasive for the donor. Dr. Riwes gave us a lot of information to digest about the percentages and probabilities. It will be a difficult 3-4 months that will require us to find a place to stay in or near Ann Arbor. There are risks and no guarantees but Scott is very positive and is looking at the upside of having a chance at 10 or more years of wedded bliss (my words of course) and the possibilities of seeing more grandbabies and trips to exotic places AND Batchawana.

We will meet with the Hematologist there in the next two weeks. She will evaluate his progress on the Jakafi and his spleen health to determine when the right time to do this will be. I will continue to keep you posted when we have new information.

Sounds like we might finally be getting some nice weather so make sure you take time to enjoy it!

This picture was taken Easter Sunday last year. Not much time for hanging out in the barns these days.

The Fed Ex truck pulled in this morning and delivered a life line. The long awaited drug, Jakafi, arrived and he started to take it today. No immediate side effects. He will need weekly blood draws to track his blood’s reaction to it.

It’s taken me a few days to process but we got a call from Mayo last Friday and they indicated that after reviewing the 2nd bone marrow biopsy thoroughly, they have decided that the best thing for Scott is to pursue the stem cell or bone marrow transplant immediately rather than wait a couple years. Since the procedure requires intense follow-up for an extended period of time, they are encouraging us to look at treatment here in Michigan. I have him registered as a new patient at U of M and we are waiting to hear back. The family that has always been Michigan State fans will have to trust the experts at the Maize and Blue this year. I’ll provide more info on that as we learn the process. His siblings will be tested first, but It’s likely his match will come from the Be the Match program. It sounds like the ideal donor is between the ages of 18 and 35. We will consider having a Match party in the future once we learn more. You know – a free chicken wing or lamb brat for every check swab or something like that!

Scott remains very positive about this change of plan. We fully trust the doctors at Mayo Clinic and have heard many success stories from people that have had the transplants and now have their normal lives back. So we forge ahead!

April 7^th – According to Facebook, 3 years ago we were at the Kenny Chesney Concert. I don’t think it was quite as eventful as the Keith Urban concert in 2018 where Tal and Scott embarrassed the kids by dancing in the isles at Van Andel while the lights were on during intermission.  That was the same concert that they pirated a B-93 banner or two after the concert and told every young pretty girl that would listen that they were taking over the Morning Show for Neal and Reese on B-93 the following Monday.  Cindy was taking photos and telling them to look for them on the B-93 website the following day.  Scott was really out of his comfort shell that night and loving it.  A great time was had by all…. 

Today wasn’t nearly that eventful but I did talk to the pharmacist and the prescription for Jakafi is on its way. It was another frustrating process but in hindsight if they are willing to pay 100% of a prescription that is said to cost $15k a month, and could potentially give us our Scooter back, I guess I will let the insurance company tell me where it has to be purchased from and wait a couple extra days while they work out the details. More answered prayers for an affordable co-pay!!

Next week we hope he will feel well enough to go to a concert in Shipshewana that we planned months ago for my parents’ anniversary gift. It’s not a long drive for us and it’s a very comfortable low-key theatre. Fingers crossed we can get him there!

Thanks again for the continued messages and prayers!

Friday, April 1st – Meeting with the Hematologist confirmed the internet diagnosis of Myelofibrosis; more specifically Post ET Myelofibrosis.  A rare bone marrow cancer.  Post ET meaning it develops after a period of Essential Thrombocythemia. For those that are the type that like to research like me, a good place to start is:  https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057.

Doctors indicated that the median life expectancy for someone with this stage of the disease is approximately 36 months.  Meaning that half the people live less than 36 months and half will live more than 36 months.  This can be improved if he proves to be a candidate for a stem cell transplant down the road a couple years.  Our first priority will be getting him on Jakafi; currently the only approved medication known to be effective for Myelofibrosis. 

At this point, they believe that the lesions that were showing up in the scans are from the MF and not metastatic bone cancer so that is a blessing. Based on how he has been feeling and how fast the cancer has progressed, we are relieved to hear at 36 months is a possibility.  Realistically none of us are promised tomorrow, so we will go forward grateful for every day. 

We are thankful for so many people and things.  Gifts of food, traveling money, calls, texts and cards have all been much appreciated.  Equally important are some things that have happened that have little or no explanation.  I want to share what I believe your prayers have done for us.    

First, our thanks to a special friend for offering his words of experience at Mayo Clinic that opened Scott’s mind to the need go for help outside of Kalamazoo.  Your words made all the difference. 

The ability to find the awesome little VRBO house that made having Tal go with us very affordable and comfortable.  His willingness and ability to take a week and stay with us was incredible and we will be forever grateful for his (and Cindy’s) support.  Spending a week alone while Scott slept most of the time would have been very depressing.  Instead, we both put on about 10 pounds – “getting our eat on” – quote from a movie we watched – aka stress eating together.  😊

After learning of Scott’s enlarged spleen, I had returned to my internet searching.   What I found that night was information I hadn’t found before and it was clear that Scott had a textbook case of Myelofibrosis.  I told Scott what I had found and tried to pull it up again and that same exact information was nowhere to be found.  Similar sights had good information but nothing as clear and obvious as what I had viewed the night before.  Having this “vision” before meeting with the hematologists made the doctors news much easier to hear.  It made it confirmation rather than shock and fear.    

Before we left for Mayo, I had learned from a customer that he had a condition in the same family as Essential Thrombosis and was having great success with Jakafi.  Knowing that he has lived long past his initial diagnosis and is able to lead a normal life with this medication is VERY encouraging.   

We made it home in great time despite the snow and rain, so prayers for safe travel were granted as well.  While this road isn’t the path we had planned, the people that have been placed in our path have been purposeful.  The doctors and staff at Mayo Clinic were amazing and we would highly recommend going there.  We trust that we will continue to be blessed with miracles in this difficult journey.            

March 31st

To Scott from Sheryl.

When I agreed to serve on the Farm Bureau State Committee for the Promotion and Education of Agriculture, I felt like it was an opportunity to make a difference. Little did I know that it would lead me down the path to such happiness. Thankfully the organizer there saw something that we would have never put together; that the short, chubby loud gal from Sunfield would be the perfect match for the tall, thin and quiet livestock farmer from Vicksburg. It’s hard to believe we have been together for over 10 years already. I pushed you out of your comfort zone and we began traveling. We’ve enjoyed several areas of Mexico, Jamaica, Costa Rica, Spain and Maine. Our blended family has enjoyed several trips to Batchawana and we have great times together. We have our granddaughter River, several “grand dogs” and many unborn grandchildren in our future. We have the best friends and family anyone could ask for. So much to be thankful for. I can’t help but reflect on all these things as we await the news tomorrow. We’ve most certainly hit a bump in the road, much more seriously than the pot holes on our actual road that we fought so hard to save last year. We have each other and so many wonderful people lifting us up. Your vacation shirt clearly still has a lot of life left in it and a lot of “Gearwalt” bucket list trips still need to be taken. You have been so strong and determined over the past few weeks and I know you are fighting for your life. We will process what we hear and remain positive and fight as hard as we can for a love that so few have the opportunity to experience. I will cry today so I can be strong for you tomorrow.

Zeus left for doggy daycare on Saturday.   We headed out for Minnesota about 8:15 a.m. Sunday morning and are less than an hour away already.  Scott has been snoozing the whole way in his comfy make-shift bed. 

Monday, March 28^th – We met with the lead doctor this morning. We were so pleased that he listened to Scott’s story and was as puzzled and frustrated as we are that so little has been done to get to the bottom of things.  Based on his review of the blood work, he feels this is very serious.  It didn’t take him long to have all kinds of blood work ordered and a PET scan scheduled for 1:45 TODAY.   This is the same test that they have said to be waiting for approval for in Kalamazoo for WEEKS.  More blood work first thing tomorrow and another consult at 12:45. Right now the hematologist appointment is set for Friday but they have us on the cancellation list.

While Scott isn’t able to drink with all the medication he’s on, and he wasn’t wearing his favorite vacation shirt, we were certainly feeling celebratory as things are headed in the right direction. Getting to the bottom of this. Our home away from home is so cute and comfortable and getting back and forth is very easy. Everything about this trip feels right.

Tuesday – Thursday, March 29 & March 30^th – Waiting, testing, eating and sleeping.  Mostly eating for Tal and I.  We stress eat and nothing sounds good to Scott other than oatmeal.  Dan and Kelly had an amazing spread delivered one night that fed us for a few meals; that was a terrific surprise.  Scott joins us off and on for movies when the pain meds are working which isn’t as much as we would like. 

March 21^st – They managed to arrange CT Scans for Scott yesterday.  Results were posted on MyChart last night but not read by the doctors until today.  The lesions found on his hips are also in other places. His lymph nodes are clear so far and his organs are also in good shape.  His spleen is enlarged and that is new information.  That might explain the drastic weight loss and lack of appetite.   

Not having the patience to wait until tomorrow, I found myself up until the wee hours of the morning with my new best friend Google.  Knowing that I shouldn’t believe everything I read, I am cautiously optimistic that I have found the answer.  In my quest for information, I googled Essential Thrombosis + enlarged spleen and got “Myelofibrosis”.    Further searches on that topic, seem to make me feel like I have found what we have been looking for – he has all the symptoms of this condition. Although it indicates it’s very rare, only 18,000 people have it in the U. S.; it is a fairly common transition from Essential Thrombocythemia or (ET).

We hear from Dr “O” about 1 p.m. the next day and as I anxiously await his announcement that we have found the problem, I hear him saying that he has consulted several of his colleagues and they are all baffled by the situation.  My head was swimming as I hear these words.    Baffled – and you are a licensed oncologist/hematologist with how much invested into your education and you have been my husband’s doctor for ten years and you are baffled.  I have zero medical background but it took me about 30 minutes to narrow my search down to the perfect explanation.  Now what do I do???

The next day, our family doctor called to see if we knew anything new.  I confided in him my findings.  He encouraged me to call Dr. O again and let him know that I had found something of interest.  He reasoned that I would know best what all his symptoms were and that he often finds that partners and mothers were very intuitive when it came to medical issues. 

I called Dr. O’s office and talked to the nurse.  She said that since we were going to Mayo before the Doctor got back from vacation that I should just discuss my concerns with them when we got there.  O.k. then……WILL DO! Can’t wait to see what they say.

Ramblings from the week of March 13^th

Friends; the family you choose.  This journey has reminded us just how big our family is.  One “side of the family” is my friends from my first marriage.  Their support and love for Scott has been there since the first time I introduced him to them.   This group has been there for each other for over 50 years; high school friends of my first husband. The beloved annual canoe trip that has turned into a rafting trip has been a highlight for me since 1983. Scott was finally able to experience this event in 2021. 

We have another group of friends up in the Kent City area that blossomed in 2011 from of my Farm Women’s Symposium affiliation.  Then we have the friendships that have sprouted from our friendship with Tal and Cindy.  Tal is like a brother to me and Scott’s ability to be friends with him was a “must happen” test in our early dating days.  They passed with flying colors and now they are as close as can be.  When Tal found Cindy, that completed our fabulous foursome. Everyone should have at least one couple that they can travel with and have bucket list experiences with.  We’ve enjoyed annual trips to several tropical areas, a Riverboat Trip in 2020 on Kentucky Lake, Maine in 2021 and a several trips to enjoy the waters of Michigan. We even took our honeymoons with each other; providing some more great stories and memories.

We are over-whelmed by the number of people that have offered their prayers and well wishes. It seems like every day I learn about someone else who has gone through something similar. Sometimes it’s just hard to believe – believe in today’s health care system, understand why Scott’s deserves this, believe that it’s all going to be ok. We’re trying hard to keep the faith. He had a decent day yesterday and again today so we are grateful for that. It isn’t looking like the PET scan will be happening in Kalamazoo but he already has four appointments showing on the Mayo Clinic version of MyChart. We are going to beat this – one location or another!

Pain update – The key to keeping the pain manageable is vigilance; if you relax and forget what time it is – you pay the price.   We live in 2-hour blocks and manage work and naps in between. Thanks to family that is bringing food and stopping in to visit so I can go do errands and things.  He’s not well enough right now to be left alone. 

The PET scan won’t be approved because there hasn’t been a biopsy. Doctors are trying to schedule some CT scans but I question they will be able to schedule them in before we leave.

We decided to take Tal up on his offer to drive us to Mayo. I’m not on my game any more than Scott is lately so this will be safer and Tal has a proven track record of getting us where we need to on time. He will stay a couple days and make sure I can handle getting Scott back and forth. If we need help, Ellen has offered to fly out and help when Tal leaves. We have the best friends!

I booked a house last night with VRBO that is one block from the hospital and will give us a really comfortable home base; cheaper and more comfortable than booking a couple hotel rooms for 10 days. I’m really relieved to have that booked and off my TO DO list.

Taken from Scooter’s Flock – March 12, 2022

Ok – I need to be thankful we live here and not the Ukraine – but our health care system continues to blow me away. Having lived in my comfortable little bubble for so long I had no idea how this all worked. You can’t get the necessary pain medicines because they have to prevent you from addiction, you can’t get the tests you need because the doctors haven’t convinced the insurance company that you need it.

I’m not blaming my particular insurance company or group of doctors because I think it’s all the same; every business in every city is under-staffed and over-worked. Only we aren’t talking long lines and shorter hours at your favorite fast-food joint; we are talking about human lives.

We got the call that the PET scan for Monday – scheduled 10 days ago – had been cancelled due to the fact that the insurance company hadn’t yet approved it. That led to a big circle jerk of everyone blaming the other; everyone ending their conversation with some version of “enjoy the rest of your day”.

Rather than hang our hopes on the reschedule date, we are focusing on being totally prepared to go to Mayo Clinic. The test can be done there, we just hoped that it would be already completed so a plan for treatment would be that much closer. If by some chance it happens before we leave, I’ll let you all know.

This post requires that I pull out the big dogs, probably my favorite vacation picture of all times. My big, strong cowboy on our trip to Jamaica in 2020. So thankful that we didn’t wait to take these incredible annual vacations.