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.image

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!image

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 imageand 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.image

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

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Written by barbigelow

Wife, mother, school psychologist, cat lover

15 comments

  1. Oh, I remember 1983. Nicholas was born in February, and you two were married on the hottest day in July! Absolutely a “good run”.
    Barb, you have been through so much. I’m hoping your PET scan will show that all your cancer has died. That would be an A+ day!
    In the realm of good news, Boo’s mom has been ensconced into an assisted living center in Brighton, Kyle is interviewing for jobs at Harvard, and we will be there at least 3-4 times a year now. Lots of visiting time. We love you to the moon and back. Hang in there, and we will see you sometime this summer. 😍

    Liked by 1 person

  2. I’ve always followed your blog but have never commented. Last night I was rushing around getting ready to go out and in my hurry I rolled my ankle and heard a pop. I had hoped it was my sandal and not a body part. It began to swell and hurt quite a bit. I iced it and went about my business limping and pretending not to be in pain.
    This morning I went to urgent care in hopes it was just a sprain.
    The X-ray came back showing a metacarpal fracture. I was given a boot and crutches and told to follow up with an orthopedic dr.
    As I was sitting here feeling sorry for myself I saw your updated blog.
    Thank you for slapping me in the face with a dose of your reality to abruptly end my little pity party. After all you have gone through my annoying little boot is barely a slight inconvenience in comparison.
    So…keep writing and fighting.

    I work at Salon Luka and get updates about you from Bridget. You have raised a wonderful and caring daughter!

    Miriam

    Liked by 1 person

  3. Barbara,
    I always love hearing from you. You have touched so many lives. Most recently my 17 year old daughter told me she’s been reading your blogs! Keep up the fight, and we are sending good vibes and prayers that the scan goes well! And I think Back Eddy’s is overrated! lol

    Liked by 1 person

  4. I can see that you’re back to your fiesty self ! What an inspiration you are to so many, including me.. ‘So glad that your students, past & present, are remembering you. A standing ovation, now that’s nice & well deserved. Lots of caring & prayers coming your way. Hope the scan goes well; keeping you in my thoughts & heart.

    Liked by 1 person

  5. Hello Barbara. I’m not sure if you remember me. My daughter, Stephanie Hight was on your caseload at the high school 8 years ago. I was diagnosed with Leiomyocarcoma in March. I have had 3 rounds of chemo so far at Dana Farber. I am on a clinical trial… A double blind study involving Aloratumab/placebo. Your strength is an inspiration to me. I can now relate to the hair loss, fatigue, nausea, and the huge interruption to what was once called “life”! I have been a para in Easton for 15 years and I am unable to work now. I have a tremendous support system of family and friends just as you do. That seems to keep me grounded and headed in the right direction! (Most days, anyways!!). I wish you well as you continue to inspire us all to keep fighting. Every day brings new hope. Take care.
    Diane Hight

    Liked by 1 person

    1. Hi Diane
      Of course I remember you and Stephanie!!! I hope she is doing well! Sorry to hear of your diagnosis but DFCI is the best. Something new every time, it’s a twisting journey, but hopefully you are feeling well enough to get out and enjoy life!
      Keep following my blog, lol, and be well,
      Barbara

      Like

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