AN UNWELCOME HITCHHIKER
Late in the COVID spring of 2020, I noticed a lump on my right shoulder (in the right sub-clavicular area, to be precise).
We’ll name my hitchhiking lump, Ford. (Sadly, probably only a few of you will get this shameless appropriation of the intergalactic traveler created by Douglas Adams).
After getting a needle biopsy, having a surgical excision (July 22), and getting a PET scan, Ford was diagnosed as a localized, non-lymphoma sarcoma.
Dr. Cronk, my local oncologist, reviewed the results of the PET scan with me and said that generally it looks quite positive. Ford is not attached to bone or lymph nodes, and he’s localized. Dr. Cronk added, however, that while Ford is a sarcoma, the pathologists (multiple) who initially evaluated the samples of Ford were unable to arrive at a conclusive determination about what kind of sarcoma he is. So, Dr. Cronk sent the samples of Ford to the Mayo Clinic and also referred me to the sarcoma team at Roswell Park Cancer Clinic in Buffalo (yes, they have a whole team devoted to nothing but sarcomas).
It turns out that Ford is a myxofibrosarcoma tumor, grade 2 (of 3). Grade 2 refers to its speed of growth - intermediate.
My first visit to Roswell Park on Aug 26 was an initial consultation with Dr. Grand’Maison, the medical oncologist on the Roswell team. And with this visit it felt like the journey was underway.
- - - - - - -“A journey is like marriage. The certain way to be wrong is to think you control it.”
- - - - - - -John Steinbeck
- - - - - - -How do you make God laugh?
- - - - - - -Tell him your plans.
- - - - - - -Don Wilson
As we walked into Roswell for our consultation, Sheryl mused, “This was not on my bucket list for retirement.” No. It wasn’t.
On Sept 03, I had a CT scan – the CT tech nurse was a Christian… his bold John 3:16 tattoo on his forearm gave him away, and we had a fun chat before he juiced me with the radioactive dye. Sheryl and I take these little things as gentle reminders along the way, in strange places, that the Lord is with us.
On Sept 04, I met with the surgeon, Dr. Kane. Sheryl peppered him with a long list of “very excellent questions” (to quote Dr. Kane). Of course, I’m sure I would have thought of all these questions… eventually.
Dr. Kane mapped out a tentative treatment plan. Tentative, because… life happens… like today’s all-day visit to the ER to control Ford’s bleeding.
* About 5 weeks of radiation (done in Ithaca… the radiologist here is part of the Roswell team. Yaaa!),
* followed by 4-8 weeks of healing (letting the skin and tissue recoup),
* followed by surgery.
* He is unsure whether chemo will be part of the treatment plan.
Sarcomas like Ford are comparatively rare – they make up about 1% of cancer diagnoses. But there are many, many kinds of sarcomas. Because the sarcoma study sample sizes are relatively small, cancer researchers are eager to learn more. So, Ford will become a lab rat after he is liberated from my shoulder and will contribute to the advance of science. He’s a hero. He’s also a jerk.
Why radiation first? Good question. Well, the benefits to radiating Ford before we evict him is that Ford does not have very clean edges – he likes to send out little tentacles in search of that ever-elusive intergalactic Shangri La. Radiating him while he’s still intact makes it easier to fry his tentacles (had to type that carefully). Also, since radiation requires oxygen to work, Ford’s heavy breathing will contribute to his early demise. Also, radiating Ford while he’s still in one piece enables the radiologist to target a smaller area – evicting Ford will leave a hole bigger than the space he presently occupies, so radiating a smaller area avoids having to radiate adjacent organs, tissue, bone, etc.
Dr. Powell, the radiological oncologist, has to sign off on this plan because Ford, having already been probed, probably knows what’s coming. He’s started ulcerating along the biopsy incision. I’ll spare you the details, but Dr. Powell needs to be ok with Dr. Kane’s recommendation to proceed with radiation. Dr. Kane said that Dr. Powell would give his ok or not-ok early in the week of Sept 06. He’ll take about 10 days to program the radiation parameters into the computer so that radiation can begin around Sept 21. Radiation will consist of a 5-minute zap 5 days a week for 5 weeks… unless I have a negative reaction, in which case the team will have to regroup (possibly proceeding immediately to surgery).
After 4-8 weeks of recovery, if I have no reactions to the radiation, I expect surgery to be scheduled for early December. After assessing the results, the team will then make a recommendation related to chemo. While there is a possibility the hitchhiker will return, Dr. Kane is generally optimistic that the radiation and surgery will say adios to Ford for good. However, there is still a possibility that some of Ford’s cousins are lurking elsewhere in my body. There’s no sign of them now, but pre-surgery scans will give clearer confirmation whether or not there is more cancer to be dealt with.
Of course, all this is serious business, and I don’t want any light-heartedness to suggest that I think otherwise. Nor, do I want to hide my fear and uncertainty with a few jokes. Sheryl and I are both aware that we don't know how this story will end. Toting around a hitchhiking lump is weird and scary, and now that it's ulcerating, it bleeds unexpectedly which pretty much puts an end to social events. It's one thing to talk glibly about trust and prayer, and quite another thing actually to trust and pray amid the mess and muddle of what we're facing. In the muddle, we want to be honest and not to pretend that we're "living triumphantly." But at the same time we want to ground ourselves in new ways in God's inexhaustible and sufficient grace.
Please give thanks and pray for our Roswell sarcoma team: https://www.roswellpark.org/cancer/sarcoma/team
Thank you for being on this journey with us. We treasure your friendship, love, and wisdom. We'll keep you updated as the journey progressed.
Steve & Sheryl