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!

May 19th – We started off the day with some rather disappointing news; brother David was a perfect match but they won’t let him donate because of his existing health issues. We can’t help but wonder why they even tested him when we told them up front that he had multiple health issues. Why would you put us through the disappointment of knowing he matches but can’t donate. Why put him through the heartache of wanting to help, knowing he’s the perfect match and then saying no you can’t. We continued on with our day as usual and until we got an unexpected call from our coordinator Maureen late this afternoon.

She wondered if we had talked to the siblings and heard the news; we actually hadn’t heard complete confirmation from everyone but had a sneaking suspicion that there were no matches other than David. She shocked us by continuing to say that while David’s match was disappointing, they felt it more promising to follow up with the matches found on the registry. We were both so taken back; we aren’t positive of what she said, but we believe she said there were 25 partial matches located. They had narrowed it down to five and then two. WHAT??? Yes!!! They are working with two potential donors to have make sure they are still willing and able to participate. If not; there are three more second string players in the wings!

So, we will continue to wait some more but now knowing that the chances are real; we are pretty excited. We will continue to welcome your prayers and wishes that at least one of these two (or five) find it in their hearts and schedules to continue with us to save Scott’s life. It sounds like Scott would not go to the hospital to begin chemo until the stem cells have been collected and are safely stored at U of M.

We are hoping to get away for a few days soon to do a short vacation before things get serious. They still think it will take until July to get everything in place but it seems a little more real tonight. Tomorrow, he has a pulmonary function test and next week an echocardiogram. Preparation is in the works!

We haven’t visited our favorite local brewpub since returning from vacation but felt a celebration was in order. Scott enjoyed his Barq’s Root Beer and I enjoyed my Shadow Dog. He wasn’t hungry enough to eat out but did have a craving for some raisin bread French toast so I obliged. One step closer to the other side!

May 16th – You don’t know how nice normal feels until things aren’t. Watching someone in excruciating pain doesn’t make for a great vacation even if you are on an exotic island. That was three months ago already. Friday the 13th didn’t bring anything bad but it also didn’t bring us the news of a match either. The weekend brought us a little normalcy. I worked at the store Friday and Saturday and it was fairly busy; normal for this time of year and weather. We had friends visit Saturday night and enjoyed a meal at the local Pub before having a bonfire and enjoying the beauty of our backyard. Sunday, I did my store cooking/prep work and we took the ’84 to Luke & Alli’s cottage to try some fishing. It rained just long enough to chase us off the lake but not too long to make it impossible to mow the lawn for them. We headed back for supper of pork chops, mashed potatoes and asparagus. Finished it off with my favorite rhubarb custard pie and ice cream. It was wonderful to have him eating right along with me! Fingers crossed for another week with pain under control and a hearty appetite. We will take a few “vanilla” weeks before we enter the next chapter of this anything but normal year.

May 12th – Patience is a virtue; one I wasn’t blessed with. The latest challenge is dealing with AFLAC. If approving the cancer claim takes much longer, I will be cooking their goose – I mean duck! Automation is great but when you receive over 20 emails asking you for the same thing that doesn’t exist; it gets a little annoying. They are insisting on a biopsy to prove that Scott has cancer. Well – with blood cancer there isn’t going to be a tumor to biopsy. And you don’t get a certificate that says “Congratulations, you officially have cancer”. It would be nice if they would just pick up a phone and talk to me but they don’t provide you with a phone number of a live being either. Our agent is trying but with little success. Once we get through this initial speed bump, I think the policy will prove very beneficial; time will tell. We are also attempting to patiently wait for Dan and the other siblings results from the Match testing. Thanks to all the young folks that have requested and sent in their test kits already. I know many of you are disappointed with the 40-year cutoff but I suppose that the testing is costly and they want people that can remain in the database for a long time.

Tonight, it’s cool enough to enjoy the back deck. Nothing better than a cool spring evening watching and listening to all the wildlife. Our backyard blooms are pretty impressive right now too. The week has been pretty uneventful. Grateful for no terrible pain episodes but not feeling good enough for any great adventures.

This photo is one of my favorites from when we had a group down for a farm tour. It’s been hard for Scott to watch all the farm activities and know that he hasn’t been there to help out. Thankfully help has presented itself and Steve hasn’t had to go this totally alone. Hopefully Friday the 13th will turn into a great day of good news; if not, we will continue to be patient knowing that God has a plan.

Relevant about May 10th, 2022 – We are on pins and needles as we wait for the results of Scott’s siblings testings. So in my spare time I read and write. So much of the medical stuff is not my thing but I’m learning. We learned that your typing comes from your parents; and that siblings have a 25% chance of matching. Your children will have no greater chance than a stranger to match as half their markers come from their father and half from their mother.

With Myelofibrosis, the bones are filling up with scar tissue and the blood is the cancer pulsing through his veins and bones. I don’t know about you but I never really thought about blood being in your bones. I’m likening the stem cell transplant to an oil change for your auto. You’ve gotten bad oil in your car and the system needs to be flushed. You can flush it out and put in new oil but you won’t really know if you’ve damaged the engine until you try and fire it up after you’ve done all the work. Scott will undergo extensive chemotherapy in the hospital to kill as much of the cancerous blood as possible before they give him the stem cell transplant or “oil change”. With any luck, the stem cells will not be rejected and they will multiply and create all new healthy blood for him. On the donor side, they will receive a drug for a number of days prior to the transplant to build up their stem cells for harvest. They will go through a process much like giving blood only the blood will be “sorted” and the needed cells harvested for Scott and the remaining blood returned to the donor in their other arm.

What we can’t know ahead of time is the amount of damage that the cancer has done as far as the scarring in his bones. This scarring is what is causing the extreme pain and we can only hope that as the Jakafi works it’s magic and with all new blood, that the scarring can be minimized so that his pain is greatly reduced.

https://bethematch.org

Scott has a match today, but please consider helping someone else in need. See the link for more information on becoming a stem cell donor.

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!