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.

My husband is/was a quiet, gentle and happy soul.  He loved farming and working with the cattle and sheep; but what seemed like over-night, he could only sit and watch what was going on at the farm.  News of his illness traveled quickly through our small community where his family has been a part of for six generations.  The Village Park was recently rejuvenated and bears the family name after Scott’s great Uncle Ferris.  It didn’t take long to realize that calling and texting everyone updates were going to be too much.  With much hesitancy, Scott agreed that it would be helpful to build a social media site to keep friends and family up to date on his condition.  In no time at all our private page “Scooter’s Flock” was being followed by over 250 people.  Along with the benefits of keeping everyone up to speed, the writing proved to be very therapeutic.  Typing didn’t seem as painful as saying the words out loud. 

March 10, 2022 – Thirsty Thursday now means Herbalife shakes and Boost. We had high hopes for the new meds but they have been letting us down. A couple bad nights back-to- back. Two to three hours of shooting pains leave him exhausted. We’ve developed a strategy of dealing with the episodes; much like lamaze. Deep breathing, focusing and a lot of hand squeezing. This week’s blood work basically just told us what we already knew – that his body is under duress as it fights whatever this is. Thankfully the PET scan for Monday the 14th is a few days closer that it was.  We did get some good news Wednesday; the AFLAC duck will be helping us pay for gas and lodging for our trip to Mayo Clinic. Seems like yesterday that we were taking our engagement pictures. This fall we will officially have a full team roster when my daughter gets married in October.

As I build this blog, I am rereading my Facebook posts and am over-whelmed with what I read.  We were obviously on auto-pilot.  How were we making it through the days with information like this? 

March 4, 2022 – Findings on the hips and pelvis are the main concern at this time. The report indicated that “lucent lesions seen throughout the pelvis and both hips is consistent with metastatic bone disease.” Metastatic would mean that cancer from another part of his body has spread and settled in the bones and we are not yet convinced that is true. Recent images of the chest and head were clear. Nothing in the bloodwork shows that there is anything going on in the kidneys, liver or prostrate. Results of the bone marrow scan didn’t indicate cancer in the blood but there was a notation that the sample was partially clotted and that the sample should be interpreted with caution.

It’s really hard to not try and be an internet doctor when the real doctors don’t seem to be moving fast enough to care for your loved one. We are quickly learning that the land of medicine doesn’t operate as efficiently as we would like. Sadly, many of you have already learned that and this is still our first rodeo.

Our focus right now is to find a pain management program that allows him to be comfortable. He has more blood work scheduled for Monday. He has a PET scan scheduled for March 14th. That will be a full body scan that will show us exactly where the cancer is located. He has been accepted at Mayo Clinic in Minnesota and has his first appointment there on Monday, March 28th. They have indicated that we will want to plan on 7-10 days there for a multitude of tests.

Shortly after meeting Scott, he injured his back. His ex-rays came back with the comment that his bones looked like that of a person with leukemia. That was rather shocking since we thought he was perfectly healthy until he hauled his daughter’s furniture up three flights of stairs trying to impress her then boyfriend and tweaked his back. Tests led to a diagnosis of Essential Thrombocythemia. It is an uncommon blood disorder where the body produces too many platelets. It isn’t curable but it’s controllable with a medication called hydroxyurea. The drug is also used to treat some types of cancer and long-term use of the drug knowingly comes with side effects. Over the past couple years, Scott’s platelet counts have increased so the doctor has had to increase the dosage that he takes. At the time his issues started, he was taking an extremely high dosage, one the doctor mentioned was the highest he had ever prescribed. Up until late last summer, he was feeling normal for a 60 year old livestock farmer that worked 10-12 hours a day, seven days a week.

In August 2021, Scott started having a lot of back pain and was really tired. He tried chiropractic’s all winter with very little relief. Back pains led to his hips aching badly. Shortly after the first of the year he started having chest pains along with the back and hip pains. Chest ex-rays were clear and he passed his stress test without problem.

He went to the hematologist in January 2022 and his bloodwork showed several areas out of the normal range; many were extremely high and many too low. His hematologist/oncologist of ten years, took Scott off the hydroxyurea to see if that was potentially the reason for the fatigue and blood work concerns.

We had hoped that after a week of relaxation in Cozumel and no hydroxyurea, we would see his pain decrease; hoping he was just over-working himself on the farm. Instead, he developed severe headaches while we were there and struggled to keep the pain under control. Nothing like being out of the country and having your spouse experiencing what appeared to be life threatening situations in the middle of the night. Needless to say we returned from our exotic vacation exhausted and scared to death. He was taking 800mg of Ibuprofin every 4 hours to be able to manage the pain that was constant.

We returned and doctored for the headaches; but they couldn’t find anything that would explain the intense headaches. If the headache went away, then the chest might hurt, or the hips or back. The intensity of the pain continued to grow as did our concerns. In March 2022, ex-rays of his back and pelvis/hips were taken since the head CT’s didn’t uncover anything serious enough to explain the headaches and the doctors were running out of ideas. The lower back showed signs of arthritis which was not a surprise as those concerns had been uncovered by the chiropractor as well.