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.