Down a New Road

Down a New Road

The last couple months have been a roller-coaster of changing plans, much of this coming from an extended engagement between Insurance, hospital, and me to get a treatment scheduled and completed.
The good news was that I DID ultimately have a new procedure called Histotripsy to treat one of my liver tumors successfully. The road to getting that treatment was anything but easy. I won’t go into the details – because it’s exhausting – but it took 6 weeks, nearly 40 hours of work, going through multiple channels, including the state insurance board, state representatives, lobbyists, review boards, all working to explain how this procedure was no longer ‘investigative’. I ultimately wrote a 5-page report on the procedure – ask me about Histotripsy some time for the details. Oddly, once the insurance was approved, it took the hospital a couple of weeks to figure out how to process the approval and get me scheduled for the procedure. In the end, it was God’s grace and provision that allowed for the procedure to take place.
In the days before the Histotripsy, I had an updated CT scan, which showed some unfortunate developments. My bone metastasis in my right rib and in my left hip showed renewed activity. In addition, they discovered a set of 1.5 cm tumors, one in each lung. However, both liver tumors appeared smaller, which was the only good news. I also recently had a blood test return results with a dramatic increase in trace cancer markers. With all that, and working with my care team, and some remarkable providential timing, we came up with a new treatment plan.
Step one is done – the Histotripsy took care of one of the two liver tumors. The remaining tumor is still small, and we are going to monitor it.
Step two – For the bone metastasis, we brought in a radiation oncologist and determined that a two-week course of targeted radiation on the two locations should knock them down. After a few days of wrangling with insurance complications – again- we were able to work out the details, and I started my two weeks of treatment Monday 11/17. This should be straightforward with only minor side effects, like some extra fatigue, but it should also reduce some of the occasional discomfort I feel.
Step three is the real turn. 18 months ago, I met with an oncologist at the Sarah Cannon Institute in Nashville, and they ran tests on the original tumor that was removed back in 2024 and noted that I had a few key markers that would have qualified me for a clinical trial, but there were no openings at that time. After the last scan, we asked again. As providential timing would have it, one slot had opened!
It’s a very targeted treatment, and the chemistry is fascinating. The treatment involves an infusion of antibodies that have been modified to seek out and attach to cancer cells that have a particular protein marker. Once attached, the cancer cell draws in the antibody and starts to disassemble it. The sequence has been modified so that the first part disassembled releases a powerful chemotherapy drug that kills the cancer cell, and usually some nearby cancer cells as well. The kids and I have taken to calling it Project Trojan Horse. The trick with a clinical trial is that I must discontinue all other treatments while on the trial (no more chemo- or immuno-therapy), and I have a short wash-out period from the radiation before starting. I must go to Nashville on December 3rd for an enrollment process and a series of baseline tests, then I will start the clinical trial mid-December.
So here are the prayer requests:
Pray that the various treatments are effective. I have pushed for an aggressive, multi-treatment approach that knocks everything down as hard as it can before starting the trial, because once on it, I must stick with it alone for a while. If it’s not effective, I have other choices, but the reality is that chemo and Immunotherapy are not as effective as they were in the past. Pray that the radiation and trial are truly effective.
Pray for logistics and funding. I now have to go up to Nashville for all of my treatments, scans, doctors etc. Many of the costs appear to be covered by the trial, but we are continuing to pay numerous co-pays and there is simply the additional time Karly will have to take off from work to be with me. In addition, we have had several critical hits the last couple months beyond the ordinary budget: The downstairs heat went out for a couple of weeks and was a costly repair to an old unit we could not fully replace. Our cars have both been extra expensive this year with repairs that drew from savings.
Finally, pray for the family. This continuing fight takes energy, time and resources that we just don’t always feel that we have. And family life needs to continue as well – Ella is deep in college applications. It’s challenging to keep the homeschool structure going with all that’s going on and Karly working. Trying to effectively give everyone fair and heathy family time is difficult.
I am grateful for how God continues to provide, but the path ahead is only visible a short distance. I have no idea what 6 months from now will look like and today that uncertainty is hard. I feel like one of the disciples still in the boat. I can see Jesus on the water, but the boat is creaking under me, and I am holding to the mast. Peter can get out and walk on the waves, but man, how do I do that? Where does that faith come from?
That being said, I have seen a collective string of ‘circumstances’ over the past two years that together add up to more than just coincidence. I have hope, and I know not to trust any one plan or treatment. We are waling a long road with many ups and downs, and now we are managing many different choices and options as we try to find the most effective treatments. Ultimately, God is really in control, and I am ok with that.
I have recently taken to reading the Lord of the Rings again, since it’s been more than 25 years since I last read it. There was a short verse that Bilbo sang when he left the shire for the last time:

The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way,
Where many paths and errands meet.

So I am still walking this road to a far county, one of healing and comfort, even if this path is rocky and difficult.