Note: Tributes on Caring Bridge do not go to us but to Caring Bridge. Just wanted to clarify since you will get pop ups asking you to donate. We are using this for communication purposes, not fundraising, and we have already donated to the site for use of the platform. It is otherwise an ad-free site, which we appreciate.
This is Laura writing. John prefers I do the updating, but he very much wants friends and family kept in the loop. We both appreciate that you care!
The first week in February, we learned John has liver cancer. This diagnosis came after a wellness visit where his primary care doctor suggested an ultrasound of the liver due to prior conditions. That was when the tumor was discovered and an MRI confirmed it was cancerous. John had no symptoms of the cancer and as of this update (September 2022), he remains active and feeling healthy.
Most of our friends know (but for those who don't) John has been sober for 33 years. For many years he has lived with cirrhosis; he also had hepatitis C which was cured in 2015 when new medication became an option. He has tolerated all of this quite well over the years, and has largely been symptom free, very active and healthy.
Due to the extent of John's prior cirrhosis, the surgeon was unable to remove the tumor safely, and John was referred to a liver transplant specialist at Intermountain Medical Center in Salt Lake City. We spent much of February and March traveling back and forth to Salt Lake to complete the process in hopes of being approved for the transplant list, which is by far offers the best outcomes for this kind of cancer. After many tests and procedures, John was officially listed on March 31, 2022 and insurance approved the procedure. This was a huge relief and means that John's chances for a full recovery are now very good.
Of course, it is still a very complicated and arduous process with some big hurdles! Cancer diagnoses are treated differently under the organ transplant system than liver failure. Rather than using markers from bloodwork to determine how sick someone is (and thus, need level) points are allotted for the cancer diagnosis all at once. However, in order to make sure that the cancer has not spread (particularly to the lungs which is common for liver cancer), there is a a six-month wait time before the patient receives those points. This is because donated livers are in short supply and it is important to make sure the person receiving one has an excellent chance of using it. So that the tumor wouldn't spread cancer, a doctor performed a microwave ablation on it in mid-March, after which we were able to breathe easier.
There have been random procedures and tests since then, but for the most part, John and I spent much of that six month waiting period doing the things we love most. We visited with family in Maui and Dallas and San Diego and Sun Valley and Seattle and Chicago. I wrote and read and hiked and did yoga and John played tennis at least three times a week, and spent a lot of time in the mountains. In honor of our anniversary, we camped at a favorite spot near the Frank Church wilderness and kayaked a section of Marsh Creek. We had a big birthday party for John in our backyard. We both feel very very grateful for all the friends and family and support we have and this along with our spiritual paths have strengthened us.
In August, when the six months were almost up, John had a CT scan of the chest and liver, and there are no signs of cancer in the lungs, and no new signs in the liver. (Woohoo!)
I'm updating this story now (in September) because we are heading towards the next phase of this journey and I wanted to offer a more thorough version of what has already happened for those who joined CaringBridge since we posted those early updates. (You can still find those, but you need to go to the journal icon in the menu and the scroll.)
Here is what we think will happen next (but of course, is subject to change):
On September 28 we plan to move into a sweet little house in the backyard of some new friends we are renting it from in the Salt Lake area. On September 29, John will receive 26 points (the cancer points) which will move him towards the top of the transplant list. From that point on, we will need to stay within a one-hour drive of Intermountain Medical Center with our phones on until a liver becomes available.
Shelbie, John's case coordinator who has done an amazing job helping us navigate this very complicated process, has indicated that John is likely to receive a transplant within the first two months (this is of course just an estimate). John's daughter Amy plans to come to Salt Lake to help during those early days after surgery. John will be in the hospital for 5-10 days after transplant and then we will need to stay in the Salt Lake area for 4-6 weeks while he recovers and to attend appointments at the transplant center.
Then we will come home to Boise!
So that is the short version (believe it or not), of our long story. This has sometimes been exhausting and at times very scary. But most of the time John and I have both felt positive and grateful. All of you are a large part of the reason why.