Spinal Tap March 2017 (2)

March Madness

It feels like forever since our last update.  We’ve had our ups and downs the last few weeks.  Should I start with the good news?


The good news… JJ was approved for immunotherapy through the pharmaceutical company’s compassionate use program, which means that he can get it for a year without it being FDA approved for his cancer and he can get it for free even though it is not covered by his insurance.  JJ also finished radiation treatments on March 1st.  JJ will get the IV immunotherapy infusions every 3 weeks at MSK in NYC.  The infusion itself only takes 30 minutes, but by the time we drive down to the city, get bloodwork, meet with the doctors, and then get treatment, it ends up being a day long process.  But we are grateful to have the opportunity to do it.  He had his first infusion 3 weeks ago and his second infusion on Friday.


The bad news…JJ’s been battling persistent nausea and periodic bouts of vomiting along with his abdominal pain for the last 4 weeks.  The pain and nausea were so bad a week 2 weeks ago that we went to urgent care at MSK and they ran a number of tests, including a spinal tap, to see if his cancer had spread to his spine.  (The picture in this post is JJ holding a vial of his spinal fluid.)  Thankfully, it had not; but, unfortunately, the spinal tap didn’t heal properly and JJ had debilitating headaches for 2 days until his doctors said to get to an ER for a blood patch.  He was leaking cerebro-spinal fluid from the spinal tap and he was at risk for seizures from it.  So, a week and a half ago I took him for a romantic Friday evening at the Westchester Medical Center ER and they once again ran more MRIs to make sure there wasn’t anything else going on neurologically.  Once they ruled that out, JJ had the blood patch at 1am.  A word of advice, if you ever might have this procedure done, don’t eat for 6 hours beforehand because they won’t give you anesthesia otherwise and in the doctor’s words “It’s not going to be pleasant.”  At 4am we left the ER with JJ’s headaches improved and his back killing him.


We had hoped that the worst was behind us, but then JJ started violently vomiting the next night at midnight and it lasted almost non-stop for 2.5 hours.  We were both terrified the blood patch would not hold through the process; but, thankfully, it did.  At first we thought JJ had caught the stomach bug and  I bleached our bathroom, aka “ground zero”, until my nostrils burned.  But JJ had another episode of violent vomiting on Wednesday.  Between those 2 episodes and the lingering nausea and abdominal pain, his GI doctor suspected he might have colitis.  So,  JJ will go for more testing to see if that is the cause.  Then, we have to try to figure out if these are all side effects of the chemo and/or seizure medications (hopefully) or the immunotherapy.


In the meantime, we started JJ on an elimination diet 11 days ago to help his digestive tract heal.  He gave up meat, dairy, wheat, and anything with high fiber.  If you’re interested, here are some of the foods you usually can tolerate when your gut is inflamed.  http://blog.listentoyourgut.com/jinis-low-residue-diet/  I’ve also been making him homemade bone broth, which he drinks daily, http://www.theyummylife.com/Slow_Cooker_Chicken_Broth.  He’s been drinking homemade apple, carrot, and cabbage juice too because the cabbage contains high amounts of glutamine, which is restorative for the gut lining.  And we’ve been making sure he takes the probiotics prescribed by his nutritionist.  We’ve seen a slow and steady improvement and certain foods definitely make his symptoms worse.  So, we’re hopeful things will continue to improve.

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