An Addendum to “No Title”

Julia mentioned Bernie Siegal and his, I think, very true statement about identifying what it is you want to live for.  Well I’ve just been reading Dr. Siegal and he said something else that struck me.  He said — “The patient who survives is the patient who asks questions.” It says something about our health care system — I just can’t figure out what.  Ha!  I mean my doc said when I was released — “Be sure and eat.  Good nutritious food.”  Should I have asked him why?  Sounds like a stupid question yes? Except that just now, after spending the entire day feeling poisoned because nothing seemed appealing to me AT ALL  I forced  myself to eat some “…good nutritious food..” And now I understand the real why.  It gives strength and vitality and totally defeats the feeling of being poisoned.  But how would you know that if you had never had experienced the cancer, food does that so naturally that we take it for granted but we lose track of  that life long understanding when being bombarded by radio active isotopes and chemo therapy, and how would you know to ask if you hadn’t read Dr. Siegal?  Hmmmmmmmmmmmm.  Asking about everything from here on out.

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  1. #1 by Anonymous on February 28, 2012 - 9:45 pm

    right on! good discovery!

  2. #2 by Elvy Stepinoff on February 28, 2012 - 9:49 pm

    Hey Tate, I know what you mean…..it often pisses me off that when we are sick, or a loved one is sick, that we must still be the advocates for our own care. But, I just thought of something….we don’t want our doctors to be paternalistic and talk down to us, and assume that they can make all decisions for us and tell us not to worry our pretty little heads about it (or do they only say that to women? :-)). And more importantly, we are empowered by our asking and advocating. That empowerment can also help us feel powerful enough to fight this disease. But, when you are really tired and feeling too tired to ask, then you have some wonderful strong advocates working with and for you. Let them all help! It helps them too. Love and good thoughts…

  3. #3 by Elvy Stepinoff on February 28, 2012 - 9:52 pm

    PS if you don’t understand the answer, ask again! Write down questions before the dr’s appt. and take notes while at the dr. And always bring someone with you when you go to the dr. That’s what Den and I have learned over the many years.

  4. #4 by Amy Clifton on February 28, 2012 - 10:26 pm

    Hi Tate… I was just going to write almost the same thing as Elvy. I’ve learned a lot about advocating for myself during the past 9 years. I do keep a medical journal and make a list of questions for my doctors visits. When I was too ill to take notes at the doctor’s office, Kirby took notes for me and we talked stuff over after the visit.
    I have also learned a tremendous amount from on-line support groups and have done lots of my own research.
    Just today I found this posted on my facebook wall. It is a blog by a woman named Toni Bernhard, who wrote a wonderful book called “How To Be Sick”. This particular post is on how to find accurate information on the web.
    http://www.psychologytoday.com/blog/turning-straw-gold/201202/finding-the-health-information-you-need-the-internet

    http://www.howtobesick.com/ She has a wonderful website of her own as well. Check it out. It’s a Buddhist inspired guide to living with chronic illness.

    It’s quite an adventure and a tremendous learning experience, often frustrating and never easy. Hang in there and keep asking those questions.

    love from Amy

  5. #5 by Martin on February 28, 2012 - 10:47 pm

    At the risk of recommending something I’m both interested in and skeptical of… the Gerson Diet is something I’m learning lots of people turn to when they are searching for a diet to accompany doctor prescribed cancer treatment. Maybe this is already something you’ve heard about. Gerson’s claims are very optimistic, and there are detractors, but it might be something to look at, or also to ask your doctor about. Love you man. Thinking about you a lot.

    http://gerson.org/pdfs/Foods_For_The_Gerson_Diet.pdf

  6. #6 by Lucy Rosenblatt on February 29, 2012 - 3:41 am

    I hope it was the food I made for you because it will make me feel that there are some things I can do to contribute to your wellness.

  7. #7 by Keiko on February 29, 2012 - 6:01 am

    I’m glad Julia is cooking for you. I wish I could. Eat lots of greens,especially in the cabbage family and miso soup is good too to help clean your blood. Love you, Keiko….Yes definitely always ask questions.

    • #8 by juliabrosenblatt on February 29, 2012 - 2:17 pm

      Lol! The one thing I am personally not doing for Tate is cooking for him. We want him to survive! Luckily we are surrounded by people that are excellent cooks.

  8. #9 by Dan Grunfeld on February 29, 2012 - 9:56 am

    Fine words, sir… put me in mind of this:

    Stay strong.
    Keep asking questions.
    And kick this thing quick so you can grab a cheeseburger.

  9. #10 by Anonymous on February 29, 2012 - 2:44 pm

    Thankfully you all are heavyweight Question-Askers from way back!! Yes, our experience was the same…my oncologist said, “basically we’re gonna tear you completely apart & then you get to put yourself back together”. One challenge is that chemo, at least when I had it 8 years ago, wasn’t highly tuned enough to just tackle the cancer cells, so getting zapped is kinda like being taken down by a really good linebacker Blackshirt from Nebraska U…another challenge is, as you’ve all seen, in western medicine “parts is parts” & we ordinary folk end up having to pull the pieces together. We’ve had some luck using a D.O. as our GP….might be worth investigating. Kaiser has them, too.

    All we can say from here is sending Sandy Eggo Sunshine and Go Team Tate!!! You all got the best offense in the universe & we wish we were closer so we could help with the practical things too — making up for it by sending TONS of love, hugs for all & four more reasons to live, dear Tate — xoxoxo Bons, Dar, Mino, & big ol’ fuzzy Rex dog

  10. #11 by Anonymous on March 1, 2012 - 8:24 pm

    You have to see this to believe it:
    http://blogs.scientificamerican.com/video-of-the-week/2012/02/22/watching-food-digestion/

    So now for some strength and vitality from the good stuff. Susan Ginsburg and Shannon will be great sources for guidance. (Oh! never noticed the “dance” in guidance before.) Best wishes from the Holy Land. –Steve’s auntie, Elinore

  11. #12 by Anonymous on March 1, 2012 - 8:29 pm

    As soon as you can, get “Illness as a Metaphor” by Susan Sontag. About her own fight with cancer, how damaging for those fighting the illness many common myths and attitudes are, and how you need to become your own assertive advocate. Really helped me cope with (other) illness. A great lady.

  12. #13 by Anonymous on March 1, 2012 - 8:31 pm

    Sorry! Didn’t realize that my entries would be “anonymous”–the two above are from Elinore.

  13. #14 by Anonymous on March 2, 2012 - 2:18 am

    Asking questions is a sad, but necessary state of affairs, Tate. When one finds a doctor in this is not the case, hold on to them with all effort.

    As for nutritious foods…hmmmm. seems time for a nut bar with helathy fruits. I’ll get it going this weekend – and can be frozen until wanted or needed.

    Thinking of you,
    Eileen

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