Hi all. This blog post covers the ten days of stressful healing of my pancreas. Sadly my rare allergic reaction to chemo “Regorafenib” wasn’t obvious until the pancreas grew so painful that I needed to spend a long time in the hospital. Thankfully I’m home now, still taking it easy but being much more cautious to not offend my pancreas again.
Pancreatitis is Common
While my pancreatitis was an allergic reaction to my Regorafenib chemo meds, I’ve learned that pancreatitis is common: the U.S. has 275,000 hospital stay cases each year, 10 times as common as brain cancer. It’s sad to think of the many people suffering the worst pain of any medical issues.
Emergency Room Visit #1
On Sunday, July 5th, I awoke with a high but modest temperature around 101º – 102º. Given my cancer I’m extra concerned, so Kali took me to the ER around 10am where I was tested fully. My temperature went down and I was released in the afternoon. Part of their tests included Covid-19, which thankfully was completely negative.
Emergency Room Visit #2
In the early hours of Wednesday, July 8th, my stomach was feeling very painful, raising to a 6 on the pain scale of 1 to 10, with an occasional spike to 7 or 8. Kali took me to the ER early that morning and they followed with many tests including CT scans, and (thankfully!) Dilaudid administration which brought me down from that serious pain. The tests also revealed a blood clot on each lung, and I was officially diagnosed with pancreatitis and admitted to stay in the hospital for full treatment. My daily dosage of Regorafenib chemotherapy meds was halted.
Over three days the healing mostly headed in the right direction, moving slowly up from light liquids. By Friday I ate a light but solid meal, feeling positive and having no pain. They sent me home with an anticoagulant medication to ensure no more blood clots would enter my lungs (a new med I’ll need to take every day from now forward – clots are too risky). Sadly, that night the pancreatitis pain spikes returned…
Emergency Room Visit #3
Friday overnight, July 10th, my pancreatitis pain returned at a level 6 with an occasional spike to 7 and 8. Once again Kali took me to the ER. This time I was also reacting to the new pill anticoagulant, another unexpected allergy. Some very unusual swelling and red face skin was going on. They were considering sending me to the ICU if the allergic reaction didn’t stop. So I was given several medications, fluids and pain managements and was finally moved back to the Oncology floor (seven hours after my arrival — seriously frustrating).
That evening before bedtime I took the 9 pills provided, and maybe didn’t drink enough water…
The Most Painful Event of My Life
I woke up about 20 minutes after the 9-pill nap with chest pain that was already at level 8 and would often peak up to 9 or 10. EVERY BREATH struck me with this deadly pain, and EVERY BREATH had me scream very loud, including several cuss words. I expected my medications to be rushed as soon as possible, but was never told how long I might need to wait. Due to communication issues between the nurse assistant and the nurse who was treating another patient at the time, and the medication order and approval required of a doctor, this incredible screaming pain lasted about 1.5 HOURS before the meds were finally given to me. Holy shit.
A Calm Pancreas
Having arrived at the UWMC hospital on Saturday, July 11th, it wasn’t until Thursday, July 16th that I had healed enough to be able to eat light foods without triggering any significant pancreatic irritation. Each day meant various medications to slowly heal the pancreas and allow me to lessen the Oxycodone needed to keep the pain light. Thankfully this slower form of healing worked properly, and though it’s scary to imagine the same pain arising at home again, I’m now sticking to simple foods and pretty confident the pancreatitis is done.
During my hospital stay, I felt it important to focus entirely only on my healing situation. Each day I visited a couple hours with Kali but communicated socially with almost nobody. It felt a bit odd, but was much needed since my days were full of nurse and doctor interactions, naps, light meals, and a few Sudoku attempts. The nurse and doctor staff were fantastic and aside from the one mistake described above, I’m highly grateful for their treatment and care for me. Also Kali’s mother Linda came to take care of the kids and help Kali, very valuable, thank you Linda.
Next week we’ll meet with Dr. McGranahan and begin considering other chemotherapies to replace Regorafenib. It’ll take a couple weeks for the pancreas to heal fully, after which we’ll try a chemo that hopefully works well with my body. My fingers will be crossed.
