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Ovarian cancer, the whispering cancer, is a brutal teacher of epistemology—the investigation of “what distinguishes justified belief from opinion”. My gyn-oncologist knows cancer.  I know myself having cancer. The intermixing of those two types of knowledge is—for me at least—challenging, because both have justification, which at times can be no more than an opinion to the other.

For instance: I knew I was sick for a long time, but my body presented no practical evidence of that sickness. That wordless whisper gave me no way to determine whether my understanding of my condition was justified. No medical person ever suggested that that this knowledge of mine was not valid, but without evidence to pursue, that knowledge was useful only in causing the doctors to accept my many returns to their offices until we stumbled on the evidence of cancer.

That was justification, if not the sort anyone in the world would want.

Once there was a diagnosis, the center of knowledge shifted from that wordless whisper that only I could hear, to a many-sided, medical and scientific conversation.  This is cancer; this is the path we are taking to deal with it; this is where this cancer and I are today.  Medical knowledge exists independently of my knowledge of my condition.  My sense of myself has been good; it has been despairing; it is once again very good. I was right that I was ill, and deathly ill at that, but that rightness is no guarantee for the next whisper I hear. If I am awake at night, my self-knowledge is as firm as jelly, as fluid as water, as dependable as the weather.

The virtue of rational, experimentally based, and verifiable treatments is the reliable, there-in-the-dark-of-the-night, knowledge. Tests tell me that some cancer is still there, but only this much. There is vastly less than before surgery and chemo, and it has not grown since, and it is due to the surgery and chemo. I admire those who can relinquish the security of modern medicine for alternative treatments, but I cannot be one of them.  I need that knowledge, such as it is.

Nevertheless, though my understanding of myself is subjective, and highly variable, it is not therefore inaccurate. It may be fuzzy and it may change by the minute, like a thermometer; like a thermometer, it is not wrong because it changes. There is a wholeness to the body accessible to only the mind and intuition of the individual. It is knowledge, imperfect and changeable, yet it must be respected. I could not go on without that knowledge, such as it is.

And yet, medical knowledge, I have learned the hard way, is much more subtly opinionated than it seems, until you have extended experience with it. This is what I learned about reading a CT scan: there are lights and shadows, spots and clouds and rolling planes, dark lines and luminescent ones. For the trained eye, though, the scan is like a map, a good, detailed map.  Maps are meaningless unless there is someone to look, to choose the information desired, and to follow it to its destination. The radiologist is the first reader. The radiologist reports the evidence, and flags the path. A different radiologist has read each of my several CT scans (a conclusion I reached based on the differing vocabulary and pattern of recording in the written reports).

I have learned that, for instance, the disappearance of a cancerous lymph node can be a non-event, not worth flagging. I would disagree, but the radiologist is reading the map for the oncologist, not for me. A different radiologist reported a previously unreported node on a gland and flagged it as “a possible metastasis”.  Metastasis is a terrifying word.  As it happened, the node on the gland that occasioned this was not new, as my gyn-oncologist verified. He said it was not evidence of metastasis.  He pointed out that my CA125 (the cancer antigen that signals cancer activity) was steady for the previous three months between 8 and 11. Normal—meaning what one would find in the general healthy population—is 0<34.  

The CT machine is a kind of camera—for itself, it knows nothing of cancer.  The radiologist knows the CT scan, and cancer, but not the results of other tests. The CA125 score is itself only a very general measure. My gyn-oncologist puts it all together, with a healthy dose of a long view arising from experience. I must add to this mixture a good dose of my knowledge of myself. Everything must be measured together, weighed, and read as a whole. Then it must be reread and re-weighed the next day, the next week. The possession of hard, verifiable, knowledge is overwhelmingly important, but there is never enough, it is never definitive even of what is, much less of what will be. Getting the reading right is powerful; getting it wrong is as well.

I can have opinions all day and into the night. Knowledge is what I need, and it is hard to find and hold on to.  I take peregrine kate’s point that this is not a disease so much as it is a condition. This is right.  Wanting to know where I am with this condition is normal. Wanting not to have to think or talk about it is also normal.  But I still listen for that whisper.

Who—or what—do you listen to, how do you listen, in those moments when you need to know your condition?  

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
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Comment Preferences

  •  I will be here (27+ / 0-)

    all evening except for a short while after 7:45 when I must help a relative. It is difficult to express how important to me the discussions of this group are. Everything that is said matters, and I will catch up with what I miss as quickly as possible.

    Is it true? Is it kind? Is it necessary? . . . and respect the dignity of every human being.

    by Vatexia on Sat Jun 07, 2014 at 09:54:16 AM PDT

    •  i missed this last (0+ / 0-)

      week, and it was my loss.  moving story, well written.  my mother had a second bout of cancer in the early 80's and she kept telling the dr she did but he never found it.  my uncle came to visit, took one look at her and took her to ucla medical center where they operated on her THAT NIGHT!!  she lost her larynx and spoke with a servox for the next 25 years.  my uncle and his connections saved her life that day.

      i hope you have a long life ahead of you, one with no cancer and a goodly amount of joy.  

      "I am an old woman, named after my mother. my old man is another child who's grown old." John Prine (not an old woman)

      by art ah zen on Sat Jun 14, 2014 at 08:02:20 AM PDT

      [ Parent ]

  •  Great topic! (7+ / 0-)

    I listen to my body and use my Acupuncturist (a Doctor of Traditional Chinese Medicine) to interpret for me.

    Oddly my oncologist uses me and my body as well. He doesn't like to do a lot of tests because they may be somewhat dangerous and they often give patients so much to worry about when there is nothing to worry about.

    He does my blood work and I ask him how I am and he always says "You tell me."

    What I love about the Monday Night Cancer Club and other support groups I'm in is this statement of yours:

    I admire those who can relinquish the security of modern medicine for alternative treatments, but I cannot be one of them.  I need that knowledge, such as it is.
    I am the exact opposite on this. I place my trust in what I call Traditional Medicine that has been around for thousands of years. Medicine that doesn't often do harm. Modern (Allopathic) medicine I am very leery of due to it's newness on the scene and the harm it often causes.

    The fact that we can come together in a group like this and accept each others beliefs and practices is what I enjoy.

    Maybe it's because it is so immediate and real for us. It's not gun safety laws in the abstract, it's my life damn it. The decisions that I make are personal to me and the threat can be somewhat dire. Not abstract at all.

    This is why I go to chemo with my friends if that's what they choose (and they've hopefully done a chemo assay to know which one will work), because it is a personal decision and I respect everyone's right to pick what works for them.

    Tracy B Ann - technically that is my signature. I scroll with my middle finger.

    by ZenTrainer on Mon Jun 09, 2014 at 06:00:35 PM PDT

  •  This reminds me of a conversation I had today (5+ / 0-)

    with a friend about diet and nutrition. I have been a nanny a few times and the second time the family let the kids eat whatever they wanted whenever they wanted.

    The key to this seemed to be that the kids has never had m&m's or McDonalds. They listened to what their bodies told them and followed that and it led to a healthy diet.

    Now, I have been exposed to all sorts of bad influences not to mention a lot of pain in my body so it's not only hard to filter out the good info from the bad, it's hard to stay in my body and be aware of what it's saying.

    I take all the "mindfulness" classes I can just to try and get back in touch with myself.

    Tracy B Ann - technically that is my signature. I scroll with my middle finger.

    by ZenTrainer on Mon Jun 09, 2014 at 06:47:42 PM PDT

  •  {{{{{Vatexia}}}}} (6+ / 0-)

    I am always happy to have new diarists in the MNCC, because they bring a different perspective. But I must say that I am especially pleased by this one of yours. What a wonderful reflection on the differences between the body's wisdom and what external measurements disclose. It's a very subtle distinction indeed, but a hugely valuable one. I suspect the long struggle you had to understand the messages from your body's symptoms has heightened your awareness of the whole mystery.

    In any case, you describe this beautifully here:

    If I am awake at night, my self-knowledge is as firm as jelly, as fluid as water, as dependable as the weather.
    and here:
    Nevertheless, though my understanding of myself is subjective, and highly variable, it is not therefore inaccurate. It may be fuzzy and it may change by the minute, like a thermometer; like a thermometer, it is not wrong because it changes. There is a wholeness to the body accessible to only the mind and intuition of the individual. It is knowledge, imperfect and changeable, yet it must be respected. I could not go on without that knowledge, such as it is.
    Gorgeous!

    And now I am in the very odd position of applying an aesthetic appreciation of what is in truth a very difficult circumstance. I hope you are not offended.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Jun 09, 2014 at 06:51:14 PM PDT

  •  Vatexia...... WOW (5+ / 0-)

    You have given every one of us a gift for each us who read this diary, to cherish and hold to our hearts as the rare treasure that it is.  Just as rare as that 4 leaf clover we found when we were kids.  Thank you for sharing so much of yourself with us.

    Life is not a problem to be solved but an adventure to be experienced.

    by DarkHawk98 on Mon Jun 09, 2014 at 07:50:45 PM PDT

  •  Beautiful diary, Vatexia (6+ / 0-)

    After pondering your question, I surely do not listen to myself. I think I am the queen of denial! I would have to say since being diagnosed, I listen to my doctors, and the nurses. The nurses know everything.
    God luck to you on this new venture, I love your vibe and peace.

    •  The nurses do know (5+ / 0-)

      almost everything, and a great deal more than they say, quite often.  

      At the beginning I not only listened to every word of doctor and nurses, and depended on that for my life, I listened to what they didn't say.  Sometimes it gave me pause.  Sometimes it made me smile.  

      You know what's right for yourself, hulibow. I went straight for surgery and chemo, ZenTrainer went for traditional Chinese medicine. There's not a right way to deal with this condition, only the way that makes sense for you. Right now what you are listening to - the words of your nurses especially - is what you need.  Be confident of that, and when it is time to listen to your body and other sources of knowledge, you will find you are doing that too.

      Thank you for your kind words about my diary.

      Is it true? Is it kind? Is it necessary? . . . and respect the dignity of every human being.

      by Vatexia on Mon Jun 09, 2014 at 08:22:10 PM PDT

      [ Parent ]

  •  It is bedtime for me. (5+ / 0-)

    Please do go on talking - I will read everything tomorrow. Thank you all for joining the conversation tonight, and being so very generous in your responses.

    May we all sleep well tonight.

    Is it true? Is it kind? Is it necessary? . . . and respect the dignity of every human being.

    by Vatexia on Mon Jun 09, 2014 at 08:44:39 PM PDT

  •  Further musings (5+ / 0-)

    When I was told by both my daughter and wife to "go see the doctor" for an occasional cough I had, I was so out of tuned to what my body was trying to tell me, that I did not realize I was coughing that often.  I have said this before, but they saved my life.  Without their urging I would not have gone to see my doctor and I would  not be alive today, I have no doubt.

    Since that time, the challenge has been to keep tuned into the channel that my body is broadcasting on.  Now, 2+ years out from discovery I am beginning to listen, at least listen better than 1 year ago when I had pneumonia 60 days after lung removal surgery.  Now I pay attention but try not to be paranoid and reactionary to what it is telling me.  The biggest things I have to pay attention to is hydration and fatigue. Having only one lung I know I need to drop weight to make it easier for my lung to function, the problem? Oh I do love ice cream, and beer, and .... and .... and.....

    impulse eating is a constant devilish thing to manage isn't it?

    Life is not a problem to be solved but an adventure to be experienced.

    by DarkHawk98 on Mon Jun 09, 2014 at 09:00:05 PM PDT

  •  how unabashedly beautiful (3+ / 0-)
    Recommended by:
    peregrine kate, mayim, ZenTrainer

    despite the ugly reality of the topic.

    Words can sometimes, in moments of grace, attain the quality of deeds. --Elie Wiesel

    by a gilas girl on Tue Jun 10, 2014 at 09:01:08 AM PDT

  •  this paying attention to your (0+ / 0-)

    body's whispers applies to what is whispered to you by your pet.  the small changes are easy to miss because they can not tell you.  when i noticed rubi's 2nd eyelid covering part of her eye, it was a small thing but it was the first sign of her cancer and i picked up on it in a couple of days.  from then until she passed 2 weeks ago, i kept a close watch on her little signs.  we treated her with surgery and chemo, and i fed her a diet designed for cancer dogs with all the supplements to support her liver and immune system.  she was healthy and happy until the last day and then we let her go.  i am sure the nutrition helped her do as well as she did and reading her body signs helped me keep her safe as long as i could.  our and their bodies know what they feel and tell us when others can't.  

    "I am an old woman, named after my mother. my old man is another child who's grown old." John Prine (not an old woman)

    by art ah zen on Sat Jun 14, 2014 at 08:13:39 AM PDT

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