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My wife is a 19 year survivor of CML, one of the lab rats who took the odds on a clinical trial of what's now sold as Gleevec. She was almost 30 by the time her cancer was correctly diagnosed, and the treatment nearly killed her.

Last fall, I was diagnosed with a rare type of melanoma in an unusual location (did you know there was cancer of the eyeball? I'll admit that I did not) at almost 40. I'm cured, although the treatment side effects are permanent and significant.

We're ready for cancer to be something that happened one time, in that most challenging year, that we learned important life lessons from. But a diagnosis in young adulthood means that the goal of my treatment is to live 50 years with cancer.

There are many wonderful services designed to help cancer survivors integrate the life altering experience of diagnosis in early adulthood. The NCI rounds them up with lots of linky love here. The tips on finding your life partner, maintaining fertility and staying in your job through early cancer are vital for most younger cancer patients.

I don't use any of them, because they don't seem to apply to me: I'm married, not looking to add to my family, and was already self-employed and therefore have the worst insurance state regulators will allow. The one point of connection for me is simply my age, which means many, many years (I hope!) of thinking about the functioning of my otherwise healthy young body.

After my diagnosis, second opinion and treatment (elapsed time 3.5 weeks), we were stunned. Another rare cancer in the family seemed like a long shot. Mrs Phoenix had been diagnosed at 29, 19 years ago, with a type of leukemia typically seen in older black men who have worked with certain chemicals. So there's 'outlier', and then there's 'this patient broke my diagnostic worksheet, OMG zebra!' from the oncology residents.

I too became a zebra last fall. And that's just weird. Like a double rainbow, but bad. A double rainbow of oncology. While any statistician could tell you that the odds of two independent events don't effect one another, a Bayesian analysis will explain how astonished we were.

We'd also structured all of our financial and family planning around the informed prediction that she was going to fall out of remission at some point, after we had kids and before they were grown. Which just goes to show you that actuarial tables can only help you so much in thinking ahead.

Pretty quickly we found out that cancer is getting less fatal all the time, for everybody except young adults. How can that be? There are a number of factors that seem to be affecting improved survival after cancer diagnosis for kids and middle-aged (and older) adults, but it's not clear why young adults aren't getting the same benefits.

There are two common-sense explanations: My wife's experience, of being diagnosed with exhaustion, measles, pregnancy and chicken pox before finally beginning emergency treatment for a classically presenting case of leukemia, is typical for younger cancer patients. She was under the care of university health, and they see quite a bit of exhaustion, contagious disease and unplanned pregnancy, so they weren't looking for a zebra.

My own experience brings out the other common-sense explanation: A healthy immune system, in a young person who is otherwise well, should chew up and spit out mutant cells. The very virulence of invasive cells should trigger a response to attack & kill them. But for some reason, that didn't happen for me--instead, my immune system allowed them to set up a manufacturing facility in my eyeball.

It's not clear why my immune system failed at that, but we learned that the invasive malignancy that was trying to kill me is a different type of cell than the slow-growing cancer more often found in the same site. So my take-away was, There is no such thing as 'cancer of the ___ [insert name of body part]', there is only the particular malignancy.

Finally, I'm feeling great and ready to put cancer behind me. I've got a business to run, a kid to finish raising--teenagers need parents as much as toddlers do, and for the same reasons--and aging parents who need my support.

The good news is the rapid development of immunotherapies targeting particular growth patterns in specific malignancies. Because of my youth and health, which are still great compared to the average patient with my disease, I'm a strong candidate for one of the clinical trials of melanoma-met-specific drugs.

The bad news about the good news is, that means my cancer is treatable even if I'm in the 37%...which means I have to keep on top of scans. Fighting my insurance company and oncology clinic, because I know that the cancer I had need not kill me even if it is lurking in my liver, adds a challenge: If I want to get old, I have to persist in the role of cancer patient.

My particular diagnosis means attending to/insisting on scans from 3 types of doctors, on a followup schedule that recedes over the horizon if I try to visualize it. I'm ready to forget this ever happened and get on with the future I expected, but I can't fail my wife and child by letting my vigilance flag.

My wife, who has been in remission since 1994, was discharged with a simple home test for whether she needs further care for that cancer: Is there blood shooting out of your ears? Did your hot shower leave your entire body visibly bruised? If yes to either, you have relapsed into leukemia, do not pass Go or the hematology clinic. As a contrast, that sounds good to me this year.

The oncologist who began treating me 15 months ago is retiring, and she's counting on me to help train her replacement in the newer discipline of cancer-survivors treatment. That feels like a vote of confidence as well as a burden I'd rather not take up. However, if I've only learned one thing, what I've learned is that no one cares as much as I do about how far I have to carry that weight, out into a decades-long future. If everything goes right.

The caption from our family's holiday greeting card, which came with pictures of the places we went in 2012 that we'd always wanted to visit together:

This happened. Best wishes for another great year together. We're happy to be here.

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 7-8 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

  •  Hi everyone and Happy New Year's Eve! (8+ / 0-)

    PhoenixRising will be along shortly; he lives within PST and has to deal with things like work today. I'll be hopping in and out myself at least until he gets here.

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Dec 31, 2012 at 05:02:55 PM PST

  •  A friend of mine just told me he had the same (8+ / 0-)

    diagnosis--cancer of the eyeball. He had something sucked out I think, and was hoping he would still be able to see okay. Sounds scary. I hope it works out well for you.

    •  Isn't that something? (6+ / 0-)

      Until I received this cancer dx myself I had no idea whatsoever that it's possible to get cancer no matter where. Of course, no reason why not--but it is so unsettling somehow.
      I once knew a small child (his parents really) who was diagnosed with some sort of blastoma of the eye when he was a toddler. Removed the eye and that was all that was necessary. Scary but a relief to have a "simple" treatment. Or so I assume. He'd be in his late twenties now, and I never knew his parents well.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Dec 31, 2012 at 05:21:27 PM PST

      [ Parent ]

      •  The kids at the specialty clinic for eye cancer (9+ / 0-)

        Are the toughest people there. Most are toddlers and many have a prosthetic eye already. Those hurt. A lot. Constantly.

        (if you're squeamish, move ahead to the next comment)

        So while it's a relief to isolate and remove the cancer, sphere removal is a last resort in today's ocular oncology.

        With melanomas of the eye, there is no survival advantage to ooectomty so it's rarely done anymore, unless the lesion is under the eyelids.

        The conjunctiva is the white part of the eyeball and the red part when you flip up your lid...which is where the sucking comes in. The entire surface needs to be chemically treated to eliminate melanoma cells.

        Parent. Entrepreneur. Cancer patient. Moose tracker.

        by PhoenixRising on Mon Dec 31, 2012 at 05:30:23 PM PST

        [ Parent ]

        •  Hmmm. I did not know that a prosthetic eye (7+ / 0-)

          would be painful, but now that you say it, of course it seems obvious. All prostheses are make-do, no matter how good.
          I guess that continues to be a mixed blessing for long-time survivors of cancer: when the new treatments come along, sometimes not that much later in someone's course of treatment than what had just been used as cutting-edge, then I can imagine it might engender a bit of wistfulness, at least, among those who barely missed the innovation. I certainly hope to reach that stage, however, no second-guessing about it.

          Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

          by peregrine kate on Mon Dec 31, 2012 at 05:48:00 PM PST

          [ Parent ]

        •  I want to thank you so much for this diary. (2+ / 0-)
          Recommended by:
          peregrine kate, Avila

          Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
          ~~ Ezra Klein

          by smileycreek on Mon Dec 31, 2012 at 11:26:36 PM PST

          [ Parent ]

    •  Yeah, there's definitely sucking involved. (9+ / 0-)

      Hope he's getting great care. My 2nd biggest worry was losing my vision, and I'm back to 20/15 in both eyes.

      What he may want to ask about is scar tissue management. For me, that got left by the wayside in all the excitement of the call from the lab. Pain is constant and will persist for the rest of my life...which I'm expecting to be several decades.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 05:22:43 PM PST

      [ Parent ]

      •  How helpful to make that suggestion, PR. (8+ / 0-)

        There's so much more I wish I'd known earlier in my treatment and recovery. It's very difficult to get up to speed; never seems like you can get ahead.

        Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Mon Dec 31, 2012 at 05:30:21 PM PST

        [ Parent ]

      •  I swear they always skip that part, no matter (6+ / 0-)

        where the scar may be.

        I learned about working to prevent scar tissue after a hernia surgery. I learned about it from my chiropractor.

        The scars from my cancer can really impact the movement of my arm. One of the three physical therapists I tried out was a bit irritated with the docs.

        She explained that it's obvious from other scars on my body how I am going to heal and that they should have planned for management to start immediately.

        Well, now I know. As you say, I am the one who  cares the most.

        Tracy B Ann - technically that is my signature.

        by ZenTrainer on Mon Dec 31, 2012 at 06:08:07 PM PST

        [ Parent ]

        •  So true for paradise50. (4+ / 0-)

          Fortunately he ran into an acquaintance who'd also had massive neck radiation for lymph nodes.  She told him the fibrosis from the radiation would get progressively worse over the next year and would be the hardest part to deal with.  He's now getting rolfing every week to deal with the fibrosis and we work with the scar tissue in his neck and shoulder every night.  But no medical person told us this would be a major issue going forward.

          Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
          ~~ Ezra Klein

          by smileycreek on Mon Dec 31, 2012 at 11:32:32 PM PST

          [ Parent ]

  •  Hi MNCCers! (9+ / 0-)

    I'm still at work completing the last couple of items for the year.

    I'm hoping to get some comments from other younger cancer patients, maybe even someone who can talk from an informed perspective about the many outdoor and support groups targeted for young folks.

    Parent. Entrepreneur. Cancer patient. Moose tracker.

    by PhoenixRising on Mon Dec 31, 2012 at 05:18:31 PM PST

    •  I am not young but Gilda's Club really targets (6+ / 0-)

      young folks. They have teen stuff as well as younger kids.

      The club that I go to have a "Noogie Land" for the little ones and a cool hang out room for teens, with TV's, games, foose ball, etc.

      They have special support groups as well.

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Mon Dec 31, 2012 at 06:11:46 PM PST

      [ Parent ]

      •  There are a couple of challenge course style (6+ / 0-)

        programs for young adult survivors. I haven't explored them for myself because I'm at the stage of life where...well, as my sig line implies, I get to celebrate my recovery by taking my kid out in the camper. (We plan to publish a blog of moose photos in a few years, when she's ready to take her turn driving.)

        I'm assuming that if I were still in the stage of launching the career and building the family, some kind of outdoor experience with other survivors would be meaningful. But mainly that's because I'd rather be outdoors, anytime!

        Parent. Entrepreneur. Cancer patient. Moose tracker.

        by PhoenixRising on Mon Dec 31, 2012 at 06:34:30 PM PST

        [ Parent ]

        •  Yes, I've seen them recently. (5+ / 0-)

          They look appealing even if I'm not in the target demographic ;)
          One of the worst and most enduring effects (so far) of my cancer and its treatment has been fatigue. I am just now feeling strong enough to tackle something more strenuous than yoga and qi gong. Soon I hope to participate in a local "LiveStrong" rehab program to help regain my strength.
          It's hard enough now (early 50s) to deal with this early weakness; I think I would have had even more difficulty accepting it and then figuring out how to respond 20 years ago, when I was much more fit.

          Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

          by peregrine kate on Mon Dec 31, 2012 at 07:08:50 PM PST

          [ Parent ]

          •  Check out this coming year's schedule (6+ / 0-)

            This camp for kids also runs spring and fall camps for women with lady part cancers.

            My mom had last September's camp in her mind as a fallback in case she was unable to fly (lymphedema from her cervical cancer, diagnosed the day I returned from the first followup scan; yes, we certainly are one lucky family).

            Happily, she bounced back enough in her symptoms that we were able to deliver her dream of taking her kids and our kids to Hawaii for her 70th instead. She's back at work this month part time, because she needs the money! Which is a great problem to have, 370 days after a stage III diagnosis.

            Parent. Entrepreneur. Cancer patient. Moose tracker.

            by PhoenixRising on Mon Dec 31, 2012 at 07:22:25 PM PST

            [ Parent ]

            •  That's a great link, thanks! (5+ / 0-)

              I must say I am relieved that there is something for women not limited to those with breast cancer. I don't know if I can take part this summer, but it looks very interesting indeed.

              How wonderful that your mother's health is better and that you could all enjoy a fabulous birthday trip. But what an awful stretch that must have been for all of you last fall. A Stage III dx is not pleasant, not pleasant at all. Good for you both that you're doing so well a mere 370 days later.

              Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

              by peregrine kate on Mon Dec 31, 2012 at 07:41:02 PM PST

              [ Parent ]

  •  Thanks for your post on follow-up of treatment (8+ / 0-)

    of cancer.  I hope everything goes well for you.

    As a survivor of colon cancer since mid 2009, I am still thankful that I get 3 month checkups.  These checks are reassuring to me that things are still going okay.

    I know that the time will come when this is reduced to 6 month, then 12 month checks with less frequent CAT scans and such.  

    Right now I'm thankful for the close monitoring.  In the future with less of it, I don't think I will be as comfortable.

  •  Wonderful diary. Great topic and wonderfully (6+ / 0-)

    written! Thanks!

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Dec 31, 2012 at 06:24:32 PM PST

  •  thank you, PhoenixRising (6+ / 0-)

    excellent diary, beautifully written . . . hotlisted to reread.

    i was diagnosed about a month before my twenty-fifth birthday.  in the almost seven years since, things are so incredibly different that some new doctors i've seen have never met anyone else who had arsenic therapy for lymphoma. i'm still surprised at, but entirely grateful just to be here this far out.  no one else from my drug trial group (we started with 34, in 2006) is still alive.

    Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

    by Avila on Mon Dec 31, 2012 at 06:47:46 PM PST

    •  Do you keep up with your trial group? (5+ / 0-)

      Guess I should say, Did you. That never occurred to me as something one would want, need or be permitted to know.

      My wife was very fortunate to fall into eligibility for a trial that was being administered at our then-local hematology program at UCSF. Most of the guys seroconverted during the trial, so she was one of the only ones who completed the experimental treatment.

      At that time, we knew a lot of men who came out of the ward dead for reasons related to HIV--may be hard to imagine at your age :), but back in the day everyone died, it was just a question of how long he had.

      One of my local doc's referrals was to a UCSF clinic. I just couldn't make myself climb that hill, so I went to the East Coast facility instead, even though the transit costs have been crippling. One of the irrational responses I chose to indulge during the short period in which I had to make dozens of existential decisions.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 07:11:27 PM PST

      [ Parent ]

      •  yes, we stayed in touch (1+ / 0-)
        Recommended by:
        peregrine kate

        though more accurately, the families kept in touch.  all of the patients in my group were from different states, and roomed together on the same floor at UTMB for about 12 weeks or so.  the families got to know each other, and the patients did, too, to different degrees.  

        as our number decreased, keeping in touch seemed more important.  we joked about living in "the shadow of the valley" but a bond formed in those long weeks of seeing only each other.  later on, when someone got married, or graduated, these events were celebrated as though the person was a family member.  (over half of the patients had died within the first two years.)  when anything good happened, the last few, all of us post-BMT, were thrilled.

        your wife's experience with a local trial and the conversion is heartbreaking to me, though i know someone on Gleevec now for brain cancer, so it may be that she and her group were among the pioneers of Gleevec.  from volunteering at Texas Children's Hospital, i believe childhood leukemias have a very hopeful prognosis now, because of drugs like Gleevec.

        the way you take responsibility in the long term, though, is incredible to me.  i truly admire your perspective.  (irrational? pero, no . . . i get it.  i couldn't have done that, either.)

        (when stem cell research was defunded by then-President Bush, my sick sense of humor and fatalism won.)  

        different times, and many advances i never expected to live to see, in just under ten years.  i wish you and your family the very best.

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:45:20 PM PST

        [ Parent ]

    •  Arsenic! I assume that's now completely outmoded. (5+ / 0-)

      I'm glad you're still here, Avila. So sad for the others in your group. Such a mystery for us all.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Dec 31, 2012 at 07:23:53 PM PST

      [ Parent ]

      •  Katie, thank you so much (1+ / 0-)
        Recommended by:
        peregrine kate

        it sounds horrible now, yes.  but then, it was one slender thread of hope, when no other hope seemed available.  now it's so outmoded, many doctors have never seen a patient who's had arsenic treatment.  (one reason i'm very pro-EHR, and hope for that immediate access to medical records . . . the local hospitals had never seen lab tests or blood smears like mine, and thought it was lab error.)

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:50:03 PM PST

        [ Parent ]

    •  Wow. Avila. I did not know this about you. (2+ / 0-)
      Recommended by:
      peregrine kate, Avila

      Thank you.

      Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
      ~~ Ezra Klein

      by smileycreek on Mon Dec 31, 2012 at 11:35:27 PM PST

      [ Parent ]

      •  smileycreek, how kind of you (2+ / 0-)
        Recommended by:
        smileycreek, peregrine kate

        i had been here at Daily Kos for a while when it happened, but i really didn't talk about it then or for years after.  

        Patriot Daily and blueness knew, but it was just something i couldn't talk about for many years.

        without peregrine kate and MNCC, i don't think i ever would have been okay to talk about it.

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:53:13 PM PST

        [ Parent ]

  •  happy new year (5+ / 0-)

    to everyone.  cheers to 2013.  may we all be here and well enough to read and enjoy life same time, next year.

    Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

    by Avila on Mon Dec 31, 2012 at 06:49:52 PM PST

  •  Happy New Year! (6+ / 0-)

    All of us in our household just returned from an excellent holiday dinner!  We also toasted that cancer should just stop hitting our family.  Two cancer dx this year alone, plus my sister from years ago when she was young enough to be a zebra!  Then my husband who was disabled in a car wreck.  We have one healthy person left - and we told him he can't get sick!  :)

    •  good luck! (7+ / 0-)

      My wife told me I couldn't get sick, and it worked for 17 years. However, it was apparently a time-limited offer.

      In June when I was visiting back East for my 6 month FU, and my mom's 3 month FU, my sister came down with shingles. In her left eye. At 42. Some people can't stand for anyone else to be the center of attention :).

      Seriously, I walked her through the opthalmalogist's office three times in a week. And knew the drill. The bright side was that I was able to share my collection of patches with someone I love. So there's that.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 07:57:05 PM PST

      [ Parent ]

      •  17 years is a prophetic number (4+ / 0-)

        in my family.  When Mom and Dad were on a cruise, an entertainer stuck a microphone in Mom's face and asked her about marriage.  She said, "the first 17 years were the hardest."  Neither Dad nor my sis or me know what exactly she meant, but when Lee and I made it to 18 years of marriage, we decided we had survived Mom's curse.  ;)

        I guess sharing eye patches is like sis and I sharing hats.  Have to look for the silver linings sometimes!  At least I kind of have a built in cancer support group at my house.  

    •  HNY to you, too, corvaire! (4+ / 0-)
      Recommended by:
      corvaire, ZenTrainer, smileycreek, Avila

      So good to read that you've had a lovely evening out. Yes, I think you all deserve a break this year. At least this year, that is, and for many more!

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Dec 31, 2012 at 08:19:20 PM PST

      [ Parent ]

  •  PhoenixRising (4+ / 0-)

    When my sister was diagnosed with multiple myeloma she was also told it usually hit older black men who worked in the oil industry.  She was 39 at the time.

    Mrs Phoenix had been diagnosed at 29, ---, with a type of leukemia typically seen in older black men who have worked with certain chemicals.
    Is this what Mrs Phoenix was diagnosed with (if you don't mind saying)?
    •  nope, but close :) (5+ / 0-)

      Her grandfather worked in the motor pool and her mom's baby brother died at 7 years old of this same type of leukemia. So those studies about linking particular cancers with both inherited and environmental factors might just be onto something.

      My wife is the child of two immigrants, Irish and Greek, so most USians would describe her as white--no common gene pool with AAs, anyhow. I suspect that the chemical impacts on her mother were passed on through both prenatal transmission and breast milk, along with the genes susceptible to mutation under pressure from those particular chemicals.

      My guess is that in the event that I live to be 91, like my remaining grandparent, there will be a lot more data around to show the links between environment and specific genetics in the causes of cancers. And that the demographic stereotyping that we substitute for knowledge about cancer (black men who worked handling petrochemicals) will seem as outlandish as leeches do to us.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 08:06:18 PM PST

      [ Parent ]

      •  I think you're probably right. Both the genetics (4+ / 0-)
        Recommended by:
        corvaire, ZenTrainer, smileycreek, Avila

        and the epigenetics must be considered; that's the wave of the future.
        Actually, oddly enough, that gives me some hope--epigenetics might be more within our direct control. At least that's what I'm working on now!

        Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Mon Dec 31, 2012 at 08:16:21 PM PST

        [ Parent ]

      •  The whole "black men in petrochemicals" (3+ / 0-)
        Recommended by:
        peregrine kate, smileycreek, Avila

        explanation always seemed suspect.  My sister was working as a banker in Chicago, and we are white, European decent.  She used to joke about her secret live as a black Texas oilman.  The only thing I could think of was that Mom died of a mystery cancer (never diagnosed), but it was found the same way as my sisters' cancer, so I always wondered if it was potentially an inherited susceptibility.  

        •  One of our friends said (5+ / 0-)

          "That is the best disguise I have ever seen!" when she learned that my wife had this cancer and had been misdiagnosed because of her demographics.

          We still laugh about that. Also about the fact that I have a type of cancer that is pretty much exclusively a white thing to have. The whitest thing about me is...amelanotic melanoma next to a bright blue pupil!

          Parent. Entrepreneur. Cancer patient. Moose tracker.

          by PhoenixRising on Mon Dec 31, 2012 at 08:24:40 PM PST

          [ Parent ]

  •  I highly recommend (7+ / 0-)

    The Emperor of All Maladies by Siddartha Mukherjee. It's basically a history of cancer from discovery through research and the latest treatment. In it, we learn that the disease is much more complicated than just a bunch of cells cloning themselves.

    Mukherjee is an oncologist/researcher and a wonderful writer. The book is easy to read for us non-scientists.

    I have two friends with eye cancer, one of whom's disease is melanoma. Yes, she lost her eye but made a tactical error in not immediately going for its extraction. Now, 10 years later, she has relapsed and undergoing a clinical trial.

    I have a blood cancer, which requires "maintenance" oral drug meds. The cancer is incurable though patients are living longer and longer due to improved treatment protocols such as mine.

    I feel terrific and unless asked, new acquaintances would never know about my disease. True, even these maintenance doses of drugs come with side effects. Thus far, they are manageable. However, since they are new, there are doubts if individuals can take them indefinitely. But I do not look too far into the future. At my age, 66, my goal is making it to 70 with the current quality of life.

    Decisions, hopes, and dreams are different for younger patients with cancer. Thank you Phoenix, for the diary about your followup treatment. I wish you a long, long life with lots of loving time with your youngster.

    Keep writing!

    •  Hey there, nice to see you. (4+ / 0-)
      Recommended by:
      corvaire, ZenTrainer, smileycreek, Avila

      I might just be ready to read Emperor. I've been putting it off, not wanting to have every single thing I read or do concern cancer one way or another. But I'm feeling well, and six months into remission I'm even a little cocky about it all. Thanks for the recommendation.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Dec 31, 2012 at 08:18:11 PM PST

      [ Parent ]

    •  Seconded on the book (5+ / 0-)

      If that book isn't required reading for cancer patients, it should be. The notion that there is much more to the story than rogue cells, explained in easy to absorb language, helped me to put my problems into perspective.

      Thanks for the good wishes, and I hope you become the cranky old patient who remembers back when the side effects of a decade of medication were unknown. This really is a great time to have cancer, if you gotta.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 08:20:44 PM PST

      [ Parent ]

    •  Truly amazing book. (3+ / 0-)
      Recommended by:
      peregrine kate, Avila, jesmith2

      I listened to it on Audible while paradise50 was going through his treatment and it gave me serious grounding and perspective, even though it had virtually nothing to say about his particular situation.

      Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
      ~~ Ezra Klein

      by smileycreek on Mon Dec 31, 2012 at 11:45:13 PM PST

      [ Parent ]

    •  this amazing book (2+ / 0-)
      Recommended by:
      peregrine kate, jesmith2

      is one i have reread, and will reread again.  one of a kind, truly.

      Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

      by Avila on Tue Jan 01, 2013 at 02:05:40 PM PST

      [ Parent ]

  •  So, I'm hardly young, (3+ / 0-)
    Recommended by:
    peregrine kate, smileycreek, Avila

    but my oncologist said that one reason she recommended chemo is because of my relative youth at time of diagnosis.  Seems "surviving" cancer is counted at 5 years, but I would hope for more that that at age 51!  And my sister has outlived her predicted life span and is at 9 years survivorship and thinking about how she made financial plans based on much less time and whether or not she should return to work.  

    I think, more and more, that cancer is like a chronic condition, and long term monitoring may become more normal - both for the existing/cured cancer and the potential "side effect" cancers caused by the treatment regimen.  At least, that is what I hope, since I would like to be healthy and around for a while!

  •  It's now past midnight ET, and though (3+ / 0-)
    Recommended by:
    corvaire, smileycreek, Avila

    the West Coasters--including PhoenixRising, our thoughtful and eloquent diarist tonight--may continue to drop in, I myself am saying good night.

    Thanks again, PhoenixRising, for your diary this evening; I hope it'll be the first of many. (No pressure! ;)

    The invitation still stands, of course, for other MNCC contributors. Please drop me a Kosmail to let me know of your proposed date.

    Thank you all for a wonderful supportive year. As Avila wished us above: may we all be well enough a year from now to enjoy each other's company just as fully. I look forward to marking the weeks of 2013 with you in renewed health and strength, as well as we are able. Peace and blessings to everyone!

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Dec 31, 2012 at 09:31:13 PM PST

    •  i can't ever thank you (1+ / 0-)
      Recommended by:
      peregrine kate

      adequately, Katie, for the miracle of MNCC.  without you, and without this most wonderful group, i ran the gamut of emotions everytime i was online.  you have made such a difference.

      Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

      by Avila on Tue Jan 01, 2013 at 02:08:55 PM PST

      [ Parent ]

      •  Oh, my dear friend, thank you for the affirmation. (1+ / 0-)
        Recommended by:
        Avila

        I think we could trade them quite happily ;) I gain so much myself from doing it; the opportunity to share experiences and resources with everyone here takes me out of my own narrow circumstances every week, whether I am the diarist or not.
        Besides--I am so very glad that it makes a positive difference for you, because you make a positive difference for me, every time you have a chance to take part (in any medium, let me say). Many loving hugs to you, sweetie. ♥

        Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Tue Jan 01, 2013 at 04:44:52 PM PST

        [ Parent ]

        •  my miracle-working girlfriend (1+ / 0-)
          Recommended by:
          peregrine kate

          i'll never forget you, or the first time i saw you pulling the doomed starfish back from a sea of misery.  i was one of them.  there are so many, many others.  

          without you, we didn't even know who we were or that others were right here next to us.  we never even tried to organize or do anything at all together.  

          so whenever i see some list of Persons of the Year?  "what about Katie?" is my first and only thought.  

          Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

          by Avila on Tue Jan 01, 2013 at 06:21:23 PM PST

          [ Parent ]

          •  I read your comment earlier, Avila, (1+ / 0-)
            Recommended by:
            Avila

            and again you rendered me wordless, at least in direct response. I am completely humbled by your praise and gratitude.

            What I did in the meantime was to go look for the cancer support resources that I promised someone earlier in the week--and now my memo and list have gone out to her, to do some other good, I hope. So you see your comment helps keep me on the right path! ;)

            Love you as always. So glad you are here. So very glad. ♥

            Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

            by peregrine kate on Tue Jan 01, 2013 at 08:59:58 PM PST

            [ Parent ]

  •  I posted my first internal alarm here (2+ / 0-)
    Recommended by:
    peregrine kate, Avila

    in this series last January. I trusted you guys with my fears; thank you.

    After this past year of cancer crisis we're now moving into 2013: The Year of Clean Up

    And I'm really trying to set up a presence for caregivers for HPV throat cancer so even started a Facebook page here, and I guess I need to  ask you all to come by and "like" me.  I've gotten hooked up with a couple of non-profit sites, so that's good, I think?

    If anyone has suggestions for how to better manage a Caregiver page I am all ears.  There was such a steep learning curve this past year I would do anything to help the next person through it all.

    Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
    ~~ Ezra Klein

    by smileycreek on Mon Dec 31, 2012 at 11:24:42 PM PST

  •  Another good but unfortunate reason (2+ / 0-)
    Recommended by:
    Avila, peregrine kate

    for followups is the liklihood of secondary cancers--often caused or contributed to by the drugs and/or radiation used in treating the first type.  A friend, cured of melanoma is now dealing with CML.  Treatable yes--and a less scary diagnosis than melanoma.  But still the need for followup persists.   Hopefuly as more is done with more targeted therapies some of these secondary problems will disappear.  But its a good reason, if you can afford it, to pursue the targeted therapies as an early option, not as the last option.

    Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

    by barbwires on Tue Jan 01, 2013 at 12:49:42 PM PST

  •  Thank you so much (0+ / 0-)

    Phoenixrising for this discussion.  I had wondered how younger patients of cancer, thought of and managed their lives for the decades and decades they are likely to live after their treatment has ended. thank you for a very thoughtful and thorough discussion.

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

    by DarkHawk98 on Wed Jan 02, 2013 at 11:10:23 PM PST

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