Of Butterflies and Bees

Very sad today that such an icon of my youth passed away last night. Muhammad Ali was a contradiction–a prize-winning boxer and conscientious objector who refused to go to war. He made a big impression on me as a kid and later, when his message was one of peace, service and humility. He stood up to racial injustice and religious intolerance against the prevailing wind. He stood with King and Mandela. Last night the greatest ever died of septic shock–the same thing that almost killed me 2 months ago.

I have been home from rehab for a little over 2 weeks. My days are filled with rehab therapists, visiting nurses, visits from friends and naps. I have weights and exercises to follow which I hate to do when I am alone. It is monotonous but I love my PT, especially after I scared the crap out her by falling backwards on the top of the stairs on her first day. Oh well, gotta liven things up and see who is paying attention.  I have set up headquarters in my family room which involved some furniture moving since I can’t seem to get around everything in my path. Progress is slow for someone like me who is chronically impatient but I have graduated from having to wear a gait belt for safety and now can walk inside the house with a cane (and counter/furniture surfing). Still not allowed outside on my own and stairs continue to be my nemesis. I can actually shower on my own if Tim or the coconuts are around. Yahoo!

I caught a glimpse of myself in the full mirror without clothes or my hat on–I look like I just walked out of Dachau. Not sure how the Jews did it without food. I am fueled by Hilliard’s chocolates and ice cream. Speaking of torture, Tim has me watching the reboot of Roots. It is nearly impossible to sit through but should be required in high school history classes along with Schindler’s List instead of the white washed junk I was fed in high school in the 70’s. Racism and prejudice seem even more prevalent today–we could learn a lot from Mr. Ali.  Just sayin.

On Memorial Day weekend I woke up feeling lousy–lethargic and grumpy and my knees hurt—you try supporting your weight without any leg muscles. Every time I stood up I got increasingly dizzy. Nurse MacGyver and Nurse Kelsey took my blood pressure which dropped significantly when I stood up and diagnosed dehydration and amping up the water intake. I felt better. Monday Tim suggested a scenic ride to get me out of base camp–I said sure.  We ended up in Westport, a favorite place of mine. He suggested eating at Back Eddy’s. I said why not? I haven’t been out in over 2 months, what the heck. We chatted with the bartender and  the lady next to us (about cats, what else?) and things were going well.  As he finished paying the bill and escorted me to the bathroom on our way out, I felt dizzy. Once in the bathroom, as usual, someone non-handicapped was in the handicapped stall–don’t get me started on that topic. I decided to wait and became increasingly light-headed. Just then the bathroom door opened and I bumbled my way out and plopped on a chair and fainted–out cold on Tim’s shoulder. As he roused me and tried to tell me what happened I immediately vomited all over myself and the restaurant. The kind manager helped us and quietly asked me if I had cancer and told me he had been through it with his mother and sister. He helped Tim get me to the car. I am never having lobster bisque again.

We raced home, took my temperature, loaded up on anti-nausea meds, got in bed and called Diana. No, I did not want to call Doc Rachel or go to the ER (place of nightmares). We decided to sleep on it and call in the morning. I was having steroid withdrawal! I googled it and yup, I had all the symptoms. They had tapered me very slowly and I finished last Thursday. So, back on the steroids and an appointment this week with a DFCI endocrinologist to figure out a new way to taper. This week I also meet with a kidney doctor to talk about my miraculous exit from dialysis with one kidney. I forgot to tell Doc Rachel about the deer tick bite on my shoulder for a few days, so a big dose of antibiotics–I am 90% chemicals, 10% water. I asked Doc Rachel if I was her sickest patient and she said, yes, in a long time. Nice to impress my Dana Farber doctor with my illness–I always aim for number one! Like Ali!

I have had lots of time alone to think. It occurred to me that I was in a big hurry to recover but recover from what? Sooner or later it’s back to chemo with my big, bad, rare and aggressive TNBC. There is no end point. Well there is, but never mind. I have a Pet Scan this week to look at my tumors and revisit the chemo conversation. I don’t feel anywhere ready to start again when I weigh 117 pounds and haven’t really mastered the whole walking thing but whatever. Not working means I can sleep 12 hours a night, the upside!

What keeps me going besides the obvious? All the texts, memes, notes, food, and funny jokes I receive from all of you. It matters. This week I received a you tube video of one of my advisory students giving a class speech on her hero–Me! The senior class has decided to dedicate their yearbook to me and I received a standing ovation at class night in absentia. Former students keep in touch and reach out. It makes me feel not forgotten or left behind and that my life had meaning even if it is short.

The photo in the heading is of Tim and me at the 1983 Boston Marathon the year we got married. It’s been a good run.

Instead of a song I am adding a you tube clip of Tig Notaro, a funny comedienne with breast cancer who writes for Amy Schumer (another funny lady who supports gun control, one of my interests).

Happy June, Happy Summer, Happy Almost Out of School, Happy Strawberries!

Love,

Barb and the gang