Scott’s Story

Site created on October 21, 2022

We realize how fortunate we are to have so many friends and family who care about us and who we want to include in updates about Scott's recent  health challenges. We've started this CaringBridge website in an effort to have a central place for people to find information. You're invited to share our link with anyone who would like to follow along. Of course we'll take all the good vibes, positive thoughts and prayers you have to send our way. 

Newest Update

Journal entry by Susi Thompson

It’s been awhile since I’ve updated everyone and, in this case, the lack of news has been good news.

 

On May 26th, Scott saw his home oncologist, Dr. Saqlain, and it was really just a planning and catching up appointment. We got some clarification on his treatment plan moving forward and learned a few details we didn’t know. 

 Scott starts his maintenance medications today and the plan for now requires him to go to the infusion center once every two weeks for lab work and then an injection of the medication Velcade (bortezomib). It’s one of the first proteasome inhibitors they found to have a significant impact on myeloma cells. Think of the proteasome as a little recycling machine for unwanted or damaged proteins. The unwanted proteins are flagged and taken to the recycling machine and broken down into basic parts to be used in making new usable proteins. Cancer cells replicate more quickly than regular healthy cells, so when you close the recycling factory, or slow it down,  those proteins build up and become toxic to one another and ultimately destroy themselves rather than being recycled. I just insulted the science community with my oversimplification of this, but I don’t think I’m too far off.  Scott will also get a second drug, Daratumumab (Dara), once a month at the same time as Velcade. Dara is a targeted therapy, meaning, antibodies are made in a lab that search for very specific proteins on cells. In Scott’s case, the engineered antibody looks for the CD38 protein located on myeloma cells, binds to the protein and causes the cell to die. Honestly, I’m captivated by the brilliance of researchers. It’s humbling to be constantly confronted with how much knowledge we are simply ignorant about. Most of us open a pill bottle and swallow a magic pill that makes things better when, in reality, there’s no magic to it at all. It’s more the result of some of the most innovative scientists who are passionate about solving complex problems. If you’ve ever been sick and recovered, a debt of gratitude is owed to these miracle workers. 

 

In other news, it’s been five years since Scott was diagnosed with bladder cancer. He'd been followed closely during that time and was supposed to have his last procedure to look in the bladder this past Monday, but it appears the urinary tract infection he had in the middle of May might not be completely gone. So he'll have to wait for his last bladder scope for a few weeks. They sent the urine sample to culture and I’m anticipating he'll have a new antibiotic by the end of the week. Once the UTI is gone and he has the last bladder scope completed, he’ll see the urologist yearly but won’t have to have invasive procedures at each visit. Obviously, Scott's happy about that news. It’s hard to believe it’s been five years already. 

 

Scott’s been staying home most of the time but has ventured out to a late night movie or a quick stop to the grocery store or to play guitar at a friend's house. He’s been to a couple of small family gatherings too. It’s kind of a game time decision as to what he does or doesn’t do. Because it’s summer, you’d think there’d be less illness circulating in the community, but that’s not the case, especially this year. Michael’s actually had a GI virus for the last four days but so far, Lysol, Clorox wipes and hand washing has  kept it from making its way to us.

 


How am I doing? Well, it’s summer, it’s been sunny and it’s been hot. At any given moment, I can be found out in my yard doing one thing or another. Unfortunately, that means I have yet another excuse to turn a blind eye to maintaining the inside of my house. I’m sorry, but flowers will win my attention every time. Nature has taught me that time and patience produce some of life's most precious gifts. There is something transformative about waiting. You do the work, then nourished with faith, you wait. Sometimes the wait is short and your pay off is quick. But sometimes the wait is long and it can be difficult to see the possibility of goodness. Take this photo of some Foxglove plants I bought and planted 4 years ago. I rescued them from the Lowes discount cart of near death plants. The first year there were three small plants with one stalk of flowers, two of which promptly fell over after the first rain. Year two, only two plants grew back in the spring with only one of them producing blooms. Then this year, it multiplied and grew, producing a display of pink flowers I never thought I’d see. I can’t tell you how many times I’ve gone to look at that Foxglove plant in particular and just have to pause and acknowledge all the work that was being done while I waited and how thankful I am that I didn't give up on it. Look what I would have missed. 

Scott’s multiple myeloma treatment reminds me of how I tend my flowers. We do the work of managing medications, appointments and participating in collaborative care and then we wait, having faith that the other members of the care team are discussing and adjusting treatments, developing and modifying plans of care, anticipating that with time, even something that appears seriously ill, like my Foxgloves, will one day be abundantly healthy. In the past year, we’ve seen some pretty great things arise from desperate places. I have no doubt this journey will continue to give us exactly what we need when it’s needed. Until then we'll continue to work and wait.

 

Until next time.

 

Susi

 
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