The Final Procedure
On Monday I had the last intrathecal chemo procedure -- a lumbar puncture with chemo injected directly into my spine. I admit, I have felt like holy hell all week as a result, but it is the end. From here on out it’s blood tests and monitoring. I’ll eventually need some other tests to make sure I haven’t developed any side effects from the chemo and radiation, but I don’t need to do that immediately.
Today marks 11 months since my stem cell transplant. My immune system is about half-way back. Having the T-cells depleted has made progress slower than I would like, but after watching a documentary on cancer in which a little boy died from Graft vs. Host Disease, I’m happy enough with the decision made with Dr. G. to have the donor’s immunity removed. GvHD can attack the skin, stomach (which it has done in my case in a very mild fashion) and the liver. I was not keen on having liver damage, or potential mortality for that matter. So my vaccinations will have to wait.
I’ve come a long way from July 25, 2015 when I went first to urgent care, then to ER at NYM with this note:
47 yo female no sign pmhx recent with smoking this week. p/w with heavy gum bleeding, petechia purpura rash, arms trunk axila, bruising to arms, severe pallor, heavy vaginal bleeding, pt near syncope and severe fatigue. Pt also with severe occipital headache. pt tachycardia to 125 in clinic, pt needs stat cbc for h and h and platelets.
Patient Instructions
GO TO ER
You have presented with a condition that needs evaluation in an Emergency Department as I’ve explained, you verbalized undestanding. I feel there may be a condition occurring that can be life threatening to you and you will be best served in a specialized setting. If you do not proceed to an Emergency Department, you risk serious morbidity and worse.
Worse meaning DEATH. I may be vomiting a lot this week, but I am no longer in danger of dying. That’s a plus.
I have transferred my care back to my original crew at New York Methodist hospital here in Brooklyn after Medicaid ran out. I purchased a platinum health plan through Obamacare, and Sloan Kettering does not accept any plans from the exchange. If I had the exact same plan through an employer, they would be happy to take it. The fact I am paying 100% myself rules out any further care there. It’s one of the stupidest things I’ve ever heard (and believe me, I’ve heard a lot of stupid things).
I received a warm welcome from my original doctors when I returned in August. Dr. H. didn’t recognize me at first because I was wearing contact lenses and now have hair. Not enough, but it’s coming along. It was also burgundy at the time, so that probably threw him off as well. All of the gang seemed genuinely excited to see me. Dr. A. was always in contact while I was at Sloan, checking on my progress every month or so. I guess a success story is a happy thing for the team. Plus, who else went to such efforts to make them laugh?
Dr. C., who is a fine purveyor of sarcasm himself, even brought me food after my first intrathecal at the infusion center since he wanted me to stick around for a bit, and I was starving. I ran into him at my buddy’s show and introduced him as “one of the doctors who saved my life.” Then I bought him a whisky.
Speaking of whisky, I am six days from departing for Scotland where I expect to be imbibing suitable quantities of single malt and probably lots of fish. Hopefully my stomach stops being a jerk soon and my taste buds too, since I would really like to have some steak while I’m there. Angus beef you know. I like steak.
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