Jonathan’s Story

Site created on January 31, 2024

I'm an engineer who has spent the last 10 years working for Mayo Clinic in Rochester, MN.   In 2000, at 20 years old, I was diagnosed with Ulcerative Colitis and Primary Sclerosing Cholangitis, a rare liver disease ( more info: https://rb.gy/trg1rd ).  In 2004 I was diagnosed with "dysplasia" (abnormal cell growth) following a surveillance colonoscopy, and that led to a total colectomy followed by a J-pouch surgery.  Dysplasia can become cancer, so this surgery avoided colon cancer permanently.  

A few years later I was diagnosed with bile duct cancer, cholangiocarcinoma, and give 6 months to live. Thankfully that diagnosis was an error, and I've just been monitoring my condition from about 2006 to 2020.  

In 2020 my liver function tests destabilized after years of remaining stable, and ultimately I was listed for transplant in September 2023.   Unfortunately, after a few months I was also diagnosed with liver cancer -- infiltrative hepatocellular carcinoma -- in February 2024, after only a few months on the transplant list.  That diagnosis removed me from consideration for transplant, so now I can only fight the cancer in whatever is left of my original liver.  Due to the severe damage to my liver that already existed at this point, surgery to remove the cancer wasn't possible, and radiation would have damaged my liver too severely.  My only remaining option is immunotherapy -- a relatively recent approach that is more effective than traditional chemotherapy for liver cancer.  

With any luck the cancer drugs will shrink the tumor enough that I'll be eligible for transplant again, but that would require a lot of luck. Most likely this journal won't end up being more than 1-2 years long.

Newest Update

May 01, 2024

Journal entry by Jonathan Tomshine —

So, for the 2nd time in as many days my biopsy was canceled. But this time it is probably for the best because interventional radiology (who do the work) came up with a different approach that will be safer and more precise. They will put a lead down my juggler vein and approach the liver from above. Any bleeding will bleed back into the juggler vein and be self-limiting, and since the approach follows a known route, it'll be harder to go off-track.  Who can say "no" to safer and more accurate?

Plus, I'll be much more sedated -- a luxury, but a welcome one.

As always, I'll keep updating!
Read More of the journal titled "May 01, 2024"
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