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Since my second or third visit, I have developed the habit of taking fresh flowers to my oncologist when I have a consult with her. She’s always very appreciative, in part since that means they have a bright cheery spot in their break room for as long as they last. My doc also impresses me by how many flowers she can identify, often when I myself do not recall what they are. Most of the year, I can harvest flowers from my own garden, but it’s far too early in the season for that here. Today, I took purple freesia from Trader Joe’s.

That’s just one of the rituals in which I engage when I have to go into the “belly of the beast” of cancer treatment. It strikes me as akin to the habits of ballplayers who always wear the same lucky socks (or whatever) when they’re in a special game. It’s highly unlikely that practicing these rituals has any bearing on the outcome of the event we seek to influence. And yet, if they bring some confidence and calm along with their practice, then perhaps they do indeed have some effect, however small.

By the time you all read this post, I will have updated it to include the results of my latest CT scan, which I had at 9:30 this morning. In part to cope with my anxiety about the whole process, I now schedule my scan the same day as my consult, since it does not take that long for radiology to generate a preliminary interpretation of the results. A few scans ago, I had to wait several days between the scan and the consult, and that wait is a torture for me that I’d prefer to avoid.

On Sunday night, however, when I am composing this diary, I have no real idea of what the scan will say. Recently one of the NYTimes bloggers on cancer, the feminist literary critic Susan Gubar, wrote a brief essay about this very issue of not-knowing. I feel fine; I have no discernible symptoms related to a recurrence of cancer; I’ve been diligent about taking my hormone medication (more so, I must admit, than I have been about some of my other remedies). So why shouldn’t I believe that my internal cancer-o-meter is working just fine?

No real reason, actually, other than a lifetime’s habit of worrying. As if worrying has any influence at all on the future! Or, in this case, the future determination of what is already happening in my body. And then there’s the idea that expecting bad news, or at least trying to brace myself for the possibility of it, might make it marginally easier to hear such news in the event. But that too is a kind of self-delusion, because I don’t think that hearing bad or disappointing news is something one can adequately prepare for in advance.

I am continually perplexed, aggravated even, by the opacity of my own body. I know, it’s also arrogant to think that there are other aspects of myself that are “knowable” in a more complete way. But for the moment, I’ll stick with complaining about this particular aspect of my existence which seems always to escape my full—hell, even my partial—understanding.

It’s not as though I want, or expect, to know how things work to the last system, organ, or cell. It’s merely that I’d like to be able to believe that if I “feel” well, that there isn’t anything sinister going on. I suppose that such an attitude is akin to that annoying sentiment that people often express toward those who are dealing with cancer: “You look great!” Yes, it’s fine that I look great. It’s also very good that I feel great; believe me, I am not complaining about that. But it’s best of all to know, as definitively as I can, that I actually AM great in terms of my physical health. And that is something that I simply cannot do on my own. (Hmm. Maybe that’s at the center of my discomfort, at least in part: that I must depend on the expertise of others to have any insight about my own condition. Worth pondering.)

I must also observe that these tests have their own real limitations. The resolution of a CT scan isn’t down to the last fraction of a millimeter, and furthermore they carry their own risks from radiation. Some people I know from other online forums simply refuse to have them done for that reason alone. Others are not in a position to be able to have them done; without some kind of decent medical insurance, they are prohibitively expensive. Mine runs in the neighborhood of $6000 each, which would be out of the question had I no insurance.

Let me be upfront about my position on epistemology—which I think I can do without resorting to Rumsfeld’s infamous list of what we know and what we don’t. (Which is something he cribbed from someone else, though from whom I do not recall.) I am not a logical positivist. I do not think that everything that is knowable is also observable and quantifiable. Since I am neither experienced nor proficient as a philosopher, I cannot repeat for you the arguments that have been made pro and con, but I strongly believe there’s more to our existence than what our senses, or the instruments that our senses and intellect have allowed us to create, can apprehend.

I still have William James’ masterwork, Varieties of Religious Experience, on my to-read list. But for now, the belief I hold about epistemology lies somewhere in between his principle of Pragmatism—that is, what matters in terms of belief is what works for the person who holds it—and one of the aphorisms of Vine Deloria, Jr.:  “There is nothing more powerful than an idea.” (Probably a paraphrase, though given some time I could come up with his original statement.)  

Do these rather inchoate and undeveloped attitudes toward what is knowable influence my behavior now, when I am facing a major physical crisis? Of course; how could they not. To an empiricist, that kind of attitude undoubtedly elicits a great deal of eye-rolling and head-shaking. Right now, however, depending merely on what is quantifiable—whether that is a determination of health, of a disease state, or something ambiguous—is truly not what works for me.

My coping mechanisms, in other words, include a number of activities and objects that don’t have any measurable proof of success.

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.

This is a shorter list than it would be if I included some of the physical self-care practices that I’ve described in other diaries, whether there’s any documentation of their benefit to people with cancer or not.

I have several talismans, most of them jewelry of some kind. The two most important at present actually come from the Daily Kos community, particularly from the kindness and artistry of Sara R, winglion, Aji and Wings. I’ll take my Community Quilt with me into the CT scanner for sure. (As always, it is a conversation piece for the techs. I must make a habit of carrying Sara and Ann’s business cards with me.) I’m planning to hold my WhiteHawk necklace in my hand during the procedure, since it’s metal and therefore something I can’t wear around my neck. I have to raise my hands over my head during the scans, and so anything on my hands and arms are out of the range of the machine. Both of these objects carry the good wishes, support, and love of literally dozens of people, and I am daily grateful for the tangible reminders they provide. (See, there are some physical objects that do have an impact on my personal worldview—though I would argue their significance to me is far greater than the physical elements which comprise them.)

I understand that I am also still on many prayer lists, near and far. I realize that this too is a contentious topic, with most rational people pooh-poohing the idea of its efficacy. I have no clue myself. I do know that I find it comforting.

I have to say that the kind of self-prayer at which I am still a novice, meditation, is also a source of calm, comfort, and reassurance—not only during challenging moments like these, but more generally. My mantra alternates between the four basic principles of a lovingkindness meditation and the simple but wonderful prayer of Julian of Norwich: “All shall be well, all shall be well, and all manner of things shall be well.”

Sunday afternoon I went on a bluebird search in one of my favorite natural areas. My husband came along, and I would have liked nothing better than for us to have spotted one. They’re not rare here, but not terribly common either. The natural area we visited has several bluebird houses, and in the past couple of weeks I have been blessed to see a few of them at different times. Yet despite the ostensible failure of our quest, just the experience of being outside in the lovely warm sunshine of a Michigan spring day was uplifting to my spirits. I feel deeply reassured when I feel connected to the natural world rather than separate or alienated from it.

I promise I have not edited this diary in any substantive way, other than to add the appropriate links, to fix a few awkward passages, and to convey my latest news, good or bad. I say this in the hope of encouraging you to share what you find meaning in doing that’s not necessarily reasonable or rational, but still take sustenance from as you struggle with what is knowable and what is not.

Postscript: Yes, I have received good news again from my scan and my CA-125 reading. In fact, while I was in the scanner I heard a voice, not mine, resonating inside my head: “Nothing to see here.” I’m not that gifted in terms of intuition, and I was startled by that message, though it was reassuring. FYI, I did report this to my husband BEFORE we heard the confirmation of no evidence of disease from the resident.
This is now my third clear scan in a row; I’ve officially been in remission for almost ten months. We are all greatly relieved and grateful. I’m celebrating in part by being here with you. More celebrations will take place over the next week or two. No more scans for me until October.

Originally posted to peregrine kate on Mon Apr 08, 2013 at 04:30 PM PDT.

Also republished by Monday Night Cancer Club and Community Spotlight.

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Comment Preferences

  •  We haven't had cable TV for a while now, (55+ / 0-)

    and tonight is one night I regret it. One of the best ways to get lots of laundry folded is to sit in front of the TV to watch a game (especially basketball, for some reason). My, but I folded piles and piles of clothes back in the day when the Pistons were perennially in the playoffs. I'll probably be hopping back and forth between this diary and the game simulation on ESPN, unless we can get a good radio connection for the play-by-play.
    Go Blue!

    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 Apr 08, 2013 at 04:22:25 PM PDT

  •  I've just helped a dear friend with his cancer (17+ / 0-)

    treatments.  He got Cyberknife, a kind of laser, that targets to cancer,but does not touch anythingelse.  I'm sure others know alot about this.  It was an education for me and my friend is home and with so far great results.  Thanks for this site, I will check with it so I can keep learning about cancer and it's treatments.

  •  Good news! (17+ / 0-)

    So very happy to read this, peregrine kate!

    The basketball game is on regular broadcast TV here - CBS - preempting my Monday night Big Bang Theory

    It starts at 6:00 AZ time and it is Michigan vs the Cards.

  •  {{{{{{{peregrine kate}}}}}}} (22+ / 0-)

    Excellent new!  Three clean scans -- that is great!

    I am going to post a community quilt diary in a few minutes -- I'll be back with the link.  This one is for Oke.

    You can order Pootie Pads here until the website is back up. Pooties love them!

    by Sara R on Mon Apr 08, 2013 at 04:51:13 PM PDT

  •  Oh Kate, congratulations! (14+ / 0-)

    I admit, I just skimmed through the whole thing to get to the results, which is so unfair because it was beautifully written, as usual, but I just had to find out!

    So happy for you!

    I'm here to report my last chemo was on March 25th.  It was rough and shortly after that I caught a bad cold that necessitated antibiotics.  I believe I am finally on the mend and ready to embrace health again.  At least that's what I hope for.

    Uh-oh.... hubby and a glass of wine on the deck beckon... I'll be back later to really read and comment.

    Was a cold and dark December when the banks became cathedrals...

    by althea in il on Mon Apr 08, 2013 at 05:22:03 PM PDT

    •  Thanks, althea! Congrats to you for completing (11+ / 0-)

      chemo, which is its own accomplishment.
      I'm sorry that you got sick right afterwards. I suspect that's not unusual, since it takes so much out of us. And in any case, this winter appears to have been a good one for upper respiratory infections & a bad one for humans. I had two colds this winter, six weeks apart. Not common for me.
      I hope that you continue to be on the mend in all dimensions. Do feel free to come back in when your sojourn on the deck has ended.

      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 Apr 08, 2013 at 05:39:53 PM PDT

      [ Parent ]

  •  I'd like to point folks to a couple of other (16+ / 0-)

    valuable diaries on the site tonight.
    One, by mconvente (who is a cancer researcher), is a quick notice about a rally that took place in DC today in order to publicize the desperate straits of U.S. medical research, including the dearth of research related to cancer treatment and prevention. Good info in the diary and in the comments.
    The other is a Community Quilt diary by Sara R on behalf of Oke. Fortunately, Oke is not dealing with cancer; unfortunately, she has some serious health issues that are bringing her down. A quilt is exactly in order.
    Hope you can stop by one or both. Thanks!

    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 Apr 08, 2013 at 05:47:45 PM PDT

  •  Many happy returns, Kate. (15+ / 0-)

    I'm stealing the flower idea. The lemon curd and baked meringues that Mrs Phoenix sent me with at my last meeting with my first oncologist didn't last the day, I heard tell.

    She sends me with baked goods so that her wakefulness wasn't secondary insomnia, but instead a creative urge, the nights before my consults.

    I'm delighted by the new oncologist. The old one retired in Dec. and left me with 6 more followup visits (Lord willing and the crick don't rise). Her replacement is new to our area, and used the exam time to get the local angles on marriage equality.

    I'm not happy solely because my replacement doctor is a member of my tribe--that fact in itself is not dispositive in how the relationship will work or not work--but it helped to keep me relaxed to talk about something I know a lot about while she was checking out my nodes (that was NOT a metaphor, y'all).

    I'm happy because she's from New Yawk, and her staff are complaining to the patients about how efficient everything has been for the past 4 months ("she gets cranky when things run late!"), and my labs were completed before I left the building, 75 minutes after the scheduled appointment time. And she read them before she logged off the EMR for the evening.

    Parent. Entrepreneur. Cancer patient. Moose tracker.

    by PhoenixRising on Mon Apr 08, 2013 at 05:52:34 PM PDT

    •  Thanks, PR! I certainly hope so. Time will tell... (9+ / 0-)

      The flowers just evolved. Honestly, I think the first time I brought them I was trying to establish more of a rapport with my oncologist. She seemed like a really cold fish to me at first, but that impression came about for me in part because I got the bad news about my cancer staging post-surgery over the phone. Not a good way to solidify a good doctor-patient relationship. We do get along better now, perhaps because I did fuss so much in the beginning.
      But maybe you'll be able to continue the old and introduce the new, depending on how Mrs. Phoenix decides to express her creativity ;)
      Isn't it great not to have to wait for labs?! Wonderful to have someone pay attention to other people's time.

      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 Apr 08, 2013 at 06:44:46 PM PDT

      [ Parent ]

      •  You know I always thought getting the news (7+ / 0-)

        over the phone was cold. Then a friend of mine got a call from her OB/GYN after a difficult childbirth where she had a collapased fallopian tube.

        The doctor wanted to see her and her husband in the office the next day. My friend freaked and demanded the doctor get on the phone then. So did my friends husband and they found out she had fallopian tube cancer. Stage very bad, 50% chance of surviving.

        I don't think there is any good way or place to get that news.

        Tracy B Ann - technically that is my signature.

        by ZenTrainer on Mon Apr 08, 2013 at 08:37:18 PM PDT

        [ Parent ]

        •  Ouch. That sounds horrible. I'm so sorry. (7+ / 0-)

          Dare I ask how she is doing? Damn these gyno cancers.

          Bad news is hard to get no matter what, you are right. In my case, I was convinced (because I'd heard something in surgery) that things were worse than expected. The onco did tell my husband right away, but not me--and then she asked him not to say anything to me. And then, when I pushed the residents the next day for info, they stalled and wouldn't say anything either. I still shudder when I recall all that mess.

          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 Apr 08, 2013 at 08:45:38 PM PDT

          [ Parent ]

          •  Well the cancer was everywhere, so she had a lot (6+ / 0-)

            of surgery and then chemo. I think her numbers are better now (blood markers) but she still has a 50% chance and now a 16 month baby at home.

            She tested positive for the BRCA gene so is having a double masectomy this summer. That's not what I would do but whatever reduces a persons worry is what I think they should do and this does that for her.

            On the show the Big C there was just a big scene where Laura Linney's character (the one with cancer) got pretty pissed at some med students. She slammed ones computer shut and advised him to look patients in the eye and tell them the truth.

            Tracy B Ann - technically that is my signature.

            by ZenTrainer on Mon Apr 08, 2013 at 09:54:22 PM PDT

            [ Parent ]

        •  news over the phone (good for once!) (2+ / 0-)
          Recommended by:
          ZenTrainer, peregrine kate

          We 'did' get good news on our phone call, lo these 12 years and three weeks ago (but who'se counting).  My wife's surgeon called us at 5:30 on a Friday. He'd just gotten the pathology reports on what he'd taken outta the right breast, and the results of the sentinel node biopsy.  He called so late on Friday cause the results were SO good.  He got it ALL. Nothing on the sentinel node biopsy, either.  So after the mastectomy and 5 years of tamoxifen... she's still ok.  whoo hoo!!!!  

          We used lots of guided imagery, and prayer and the laying on of hands at our Lutheran church just before the operation, and shamanic healing stuff after, and lots of other 'non traditional' healing stuff... didn't care, as long as it had a chance of healing my wife physically, emotionally, and spiritually.  Michelle is a lot more non-traditional when it comes to healing and healing practices than I used to be. "i'm" a lot less traditonal on healing strategies than i used to be...  At this point, whatever works or worked is fine by us.

          •  What wonderful news! So glad for you both. (1+ / 0-)
            Recommended by:
            ZenTrainer

            Definitely worth getting a Friday evening phone call.

            I hear you about being willing to try anything, as long as it had a chance.... Healing happens on many levels and in many dimensions.

            Here's to many more multiples of 12 years with NED.

            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 Apr 09, 2013 at 06:12:46 PM PDT

            [ Parent ]

      •  what a lovely gesture (6+ / 0-)

        i wish i had thought of that!  when i was in the hospital, my family always brought a cookie tray or bakery treat for the nurses, but this is a much better (and healthier) idea.

        Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

        by Avila on Mon Apr 08, 2013 at 10:39:49 PM PDT

        [ Parent ]

  •  IT All Works PK! (11+ / 0-)

    Congrats. on your clean scan! amen.  what GREAT news! make sure and dance with hubby and your daughter today!

    I think that using all the powers of our creative minds to cope with cancer works well for us.  It definitely helps us when we at first have to accept that we have cancer.  I think that when we use our creative minds to help us to manage our anxieties about the diagnosis, treatment and managing "the after",  we all feel better about things as they evolve.  

    I too have talisman some are always with me others are always with me when I sleep. One is a medallion that I wear that looks like a dog tag and has the Marine Corps Eagle, Globe, Anchor emblem as well as the saying" Proud Dad of a US Marine" another is my cancer quilt is with me every night when I go to bed, to identify two.  the way I look at it, use it all even if it does not work it does help me keep a peaceful mind and spirit which in and of itself helps heal the body.

    On a personal note:

    I had my first post operative Ct Scan done last week and I go to see my Oncologist next week.  I will have to wait until then for the results, so far I am okay with the waiting............... so far laughs

    Next week I get to start doing full work outs at the gym!!! wooo hoooo finally I can really turn on the effort to maximum .... amen.

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

    by DarkHawk98 on Mon Apr 08, 2013 at 06:09:50 PM PDT

    •  Thanks, DH! I think that's where I come down (9+ / 0-)

      in the end, too. It all works.
      It is such a major blow to get this diagnosis. It certainly takes all of my resources to cope. Believe me, I am not a Pollyanna or relentlessly cheerful; most of the time I think I'm not that different in attitude than I used to be. (Less likely to sweat the small stuff, perhaps, but that's also only a difference of degree. And my family might think otherwise!)
      Your talismans sound wonderful. Isn't that funny how much they can come to mean to us? Are you a Marine yourself as well as being the dad of one?
      You are a braver person than I to be willing to wait a whole week. I was a TOTAL wreck when I had to wait for a long weekend. That was not worth doing again. I will be pulling for the very best possible results for you.
      That is great news about the gym!  Whoo-hoo for you! I bet you will have a blast.

      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 Apr 08, 2013 at 06:22:22 PM PDT

      [ Parent ]

      •  {{{{PK}}}} (7+ / 0-)

        No, I never served in the Armed Forces, in fact my 3 siblings were all served in the Army.  but I am so proud of my son for the choices he has made.  I know it was very hard for him to make those choices and then to live up to the choices he made.

        Me being brave? laughs No longer,  I think maybe clueless might be a more apt term to use when identifying characteristics I might have.  My days of bravery are in the distant past now for me, however, have those previous life experiences have tempered my mettle as have everyone's life experiences tempered their mettle too.  

        Funny thing about cancer is, we discover things about ourselves we never knew about ourselves.  Sometimes it makes us uncomfortable, sometimes it strengthens our resolve and sometimes we find a sense of well-being and  of grace we never knew existed.  

        These days, I try to live each day such that the Satan himself trembles in fear each morning when I awaken.
        ;-)

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

        by DarkHawk98 on Mon Apr 08, 2013 at 10:00:27 PM PDT

        [ Parent ]

        •  I am sure you give the devil a run for his money (3+ / 0-)
          Recommended by:
          Vatexia, 4Freedom, ZenTrainer

          every day. :)
          But yes, I think that cancer (or any crisis, really) just makes us more so.

          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 Apr 09, 2013 at 12:54:05 PM PDT

          [ Parent ]

  •  Big Sigh! Congratulations Kate!!!!!! (10+ / 0-)

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Apr 08, 2013 at 06:13:21 PM PDT

  •  This is an interesting video - (9+ / 0-)

    http://www.youtube.com/...

    Someone sent it to me in answer to my question of whether or not cancer cells were alive. This video doesn't answer the question for me but raises others such as is cancer natural?

    You know my oncologist has to see me because one of my oldest clients is his mom's best friend, so literally his mom told him to. ;-)

    I told him right off that not only did I not want dangerous treatments but I didn't want dangerous tests either. He is ok with that. He is not a big fan of scans anyway, saying they show so much stuff that doesn't mean anything but can make a person worry.

    I do take things to the breast clinic where I go though. Pens, fancy kleenex boxes etc.

    It's good to have people remember you. Whenever one of my pets needs any kind of surgery, I take bagels or donuts for the staff. I figure every bit of extra goood will helps.

    BTW, I remember studies (done by atheist doctors) that prove that prayer helps people heal, whether they know they are being prayed for or not.

    I was thinking about that the other day, thinking it was odd that I don't believe in a god, but do believe in what some call magic.

    The more I thought about it though I realized that I believe in science and the "magic" that I believe in is just energy, which seems very scientific to me.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Apr 08, 2013 at 06:27:48 PM PDT

  •  Glad to hear your news! (8+ / 0-)

    I had a few different rituals or habits.  Right after diagnosis, when things were still uncertain about survival, I saw a "blue dot" pic in a National Enquirer.  It was supposedly blessed by a healer and if you cut it out and touched it, it would help protect you.  I had to laugh, but still bought the magazine, cut out the blue dot and put it on the refrigerator with a magnet.  I touched it every time I went by, just in case.

    I also had a habit of taking the  story flight of stairs instead of the elevator every time I was in the Crile Bldg. (breast center) at the Cleveland Clinic.  Even today, when I'm in that building, I take the stairs to prevent my bc from coming back.  LOL.  

    I became pretty good at meditation and guided imagery during treatment.  I never had a port, so had to go through many, many needle sticks.  It helped a lot.

    It is an old strategy of tyrants to delude their victims into fighting their battles for them. FDR

    by Betty Pinson on Mon Apr 08, 2013 at 07:41:04 PM PDT

  •  Yay for the clear scan! (7+ / 0-)

    Such wonderful news, dear Kate!♥

    Image Hosted by ImageShack.us
     

  •  Excellent news (8+ / 0-)

    on your scans...a little magical thinking can't hurt, can it?

    Congratulations.

    PS: It's an awesome b-ball game, I'm pulling for Michigan.

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

    by a gilas girl on Mon Apr 08, 2013 at 08:18:13 PM PDT

  •  Started a new survivor program today (8+ / 0-)

    Healing Journey 3. Healing Journey (1-7) is a local favorite.

    This level is about spirituality. Ouch, there were some touchy places. Atheists, Hindus, lapsed Catholics, devout Anglicans, people who don't think too much about religion. All trying to connect to some larger experience of being human and being healed.

    Perhaps it will come together.

  •  So glad to hear the excellent news! (7+ / 0-)

    Waiting is so hard. When p50 had his first post-treatment PET scan they neglected to call us with the results. I finally went and looked them up myself, but only when he'd taken the dogs for a walk. It was a great and joyous moment, meeting "Ned" for the first time!

    I will say, I used to blithely go have my mammogram without giving it a second thought. But since cancer came to visit our house and pulled up a chair and sat a spell, I have a new unease about these formerly "routine" screenings.

    Oh, I used to be disgusted
    Now I try to be amused
    ~~ Elvis Costello

    by smileycreek on Mon Apr 08, 2013 at 08:58:29 PM PDT

    •  Thank you, smileycreek. (6+ / 0-)

      By the time I got to the consult today, I felt pretty peaceful thanks to my "communication." My DH didn't have the benefit of that, however, so until we actually got the good word he was pretty wound up. Oh, the worries we take on for each other....
      I agree, "routine" takes on an entirely different meaning post-cancer.

      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 Apr 08, 2013 at 09:07:48 PM PDT

      [ Parent ]

  •  All right my dears, so my wishing on behalf of U-M (6+ / 0-)

    accomplished squat tonight. Oh well.

    But I still enjoyed my evening with you! And I'll be sure to stop by early in the morning as usual.

    Here is the latest topic list; feel free to claim one or add one. Then, of course, I'll ask you to commit to a date.

    here is the list of proposed diary topics, with potential writers in parentheses:

    Cancer and PTSD
    Cancer and Depression
    Cancer and Anxiety
    Race and Class Disparities in Cancer Survival
    Clinical Trials (murasaki)
    Cancer and Genetic Testing
    Cancer and Environmental "Hot Spots" (DWG)
    Cancer and Patient Advocates
    Politics of Cancer (ZenTrainer)

    Peace and blessings to everyone, and my wishes for a healthy and gratifying week.

    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 Apr 08, 2013 at 09:52:07 PM PDT

    •  this is interesting (5+ / 0-)

      Cancer and Patient Advocates, if it can be in May?  i'm kind of overscheduled this month.

      Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

      by Avila on Mon Apr 08, 2013 at 10:14:20 PM PDT

      [ Parent ]

      •  Now that sounds like a plan, dear Avila. (4+ / 0-)
        Recommended by:
        corvaire, 4Freedom, ZenTrainer, Avila

        Thanks for the offer. Just let me know a specific Monday when you can.

        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 Apr 09, 2013 at 12:22:43 PM PDT

        [ Parent ]

        •  will do (2+ / 0-)
          Recommended by:
          peregrine kate, ZenTrainer

          the patient advocates and navigators took what i found impossible and made it so. ;)

          Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

          by Avila on Tue Apr 09, 2013 at 09:18:04 PM PDT

          [ Parent ]

  •  first priority (7+ / 0-)

    i am so very happy for you, Katie!  three clean scans?  this is wonderful.  

    congratulations, my dear friend!  may the Forces of NED stay with you forever. ;)

    Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

    by Avila on Mon Apr 08, 2013 at 10:11:14 PM PDT

  •  rituals and talismans? (6+ / 0-)

    yes, absolutely.  i have two:

    Caridad de Cobre medal, the Copper Virgin, which i wear on a rope chain but have to remove for the scan (they want my arms and hands in the scanner).  

    and (blushing), My Little Pony:

    this was the first Little Pony i ever had, given to me in 1985 (she's almost 30) and a first generation MLP.  for 26 years, she has been my good luck charm. ;)

    Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

    by Avila on Mon Apr 08, 2013 at 10:35:47 PM PDT

    •  One is beautiful and the other sweet. (4+ / 0-)
      Recommended by:
      corvaire, 4Freedom, ZenTrainer, Avila

      (But how do you do that with the images??) It is good to keep things close that lift our hearts. ♥

      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 Apr 09, 2013 at 12:25:42 PM PDT

      [ Parent ]

      •  zip drive (2+ / 0-)
        Recommended by:
        peregrine kate, ZenTrainer

        after we had hurricane damages a few years ago, started copying birth certificates and Important Papers to a USB drive (16 GB SanDisk is under $10), and i started doing the same for family pics and then any item important to me . . . so if i had to go into the hospital or whatever, i could tell my aunt i want my pony (she knows which MLP) but she could show another family member exactly which pony.

        Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

        by Avila on Tue Apr 09, 2013 at 09:16:31 PM PDT

        [ Parent ]

        •  Very smart, no surprise there. (2+ / 0-)
          Recommended by:
          ZenTrainer, Avila

          Excellent idea re: papers and so much more. I've just started making sure that stuff is backed onto an external hard drive; this is worth adding to the to-do list this spring.

          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 Apr 09, 2013 at 09:57:44 PM PDT

          [ Parent ]

          •  too kind (1+ / 0-)
            Recommended by:
            peregrine kate

            i just hate filling out form after form and waiting for replacements to be snail-mailed.  

            if you back up documents on an external hard drive, medical records are very useful!  no signing a release, waiting forever for paper copies to be mailed or faxed.  ;)

            Old saying, the devil’s greatest trick is that he convinced people that he doesn’t exist. Well, white supremacy’s greatest trick is that it has convinced people that, if it exists at all, it exists always in other people, never in us. -Junot Díaz

            by Avila on Wed Apr 10, 2013 at 08:38:10 PM PDT

            [ Parent ]

  •  May you continue to celebrate for many years! (6+ / 0-)

    Great news on your scan, PK.  And a wonderful diary...again!  You set the bar very, very high for good writing on a hard subject for us all.  Thank you so much!

    "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

    by outragedinSF on Tue Apr 09, 2013 at 12:25:27 AM PDT

    •  Thank you, outragedinSF. It feels great. (3+ / 0-)
      Recommended by:
      corvaire, 4Freedom, ZenTrainer

      I knew I was tense, but honestly I didn't know I was as tense until after I got the good news. I'm in a recuperative mode today.
      You're welcome, and I am grateful for your compliment.

      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 Apr 09, 2013 at 12:27:09 PM PDT

      [ Parent ]

  •  Lost my beautiful wife to cancer (7+ / 0-)

    Her funeral was yesterday, Monday. We were together 25 years. She fought a 3-year battle with a rare form of myeloma. So rare that if they were to clone her 25 times and apply a different regimen for each then maybe 3 or 4 of of the clones would have gone into remission.

    I carry a heavy heart.

    Shameless promotion is allowed. HousecallsHomeServices.com

    by PlanetTreasures on Tue Apr 09, 2013 at 01:53:48 AM PDT

  •  Three cheers for three clean scans (5+ / 0-)

    That is news worth celebrating.

    Be radical in your compassion.

    by DWG on Tue Apr 09, 2013 at 02:27:48 AM PDT

  •  dear peregrine kate, (5+ / 0-)

    your diary is so deeply thought-provoking and put me back on memory lane. I went through the diary with you as if the fears were my own and as if your thoughts could have been mine, if I only knew of how to formulate them. I am so glad "you beat the system again" and made it successfully through this part of your journey.. Happy for you, enjoy all of it and celebrate! My niece travelled to any place she fancied to see and tried to "inhale" all the beauty she could find.

    I just wanted to say something to your experience you describe, while getting the scan.

    In fact, while I was in the scanner I heard a voice, not mine, resonating inside my head: “Nothing to see here.” I’m not that gifted in terms of intuition, and I was startled by that message, though it was reassuring.
    I was reminded that my niece had several such intuitions in a way that made her very sure of the feeling "oh, no, there is nothing here yet and I am fine, I just know it" or (against the statements of her physicians that everything seems normal) that told her "oh, no, there is something wrong, definitely, and I know there is".

    Each time her intutitions were proven to be correct and turned out to be true.

    I don't know if this might help a little, but never lose your belief in what "some inner voice" tells you. Whatever others say. This turned also to be correct the other way around.

    She knew when things were going "not right". She always was still surprised and upset when that was the case and tried EVERYTHING to believe in some type of healing. And yes, any healing method is good ... until you know the opposite. And from what I observed with my niece, you will know.

    I know that nothing is so hard as not listening to the thoughts of fear and anxiety. And for me, any way of finding a way to do just that, is good. I am thinking about traditional spiritual methods I have seen and how they effect the coping capabilities with those fears. Never let other people tell you what you should believe or not.

    And though I used - in my earlier days - to respect knowledge in science, I find it always amazing how fast one reaches the limit of not knowing. Nature's biology and biochemistry is just too complex to not reach fast the realm of utter humbleness towards the mysteries of our bodies and environment. I find pleasure in not knowing and I find in a way great relief in accepting whatever I am to discover.

    There are beautiful cherry trees blossoming in front of my view out of the window and in my mind I send those to you. All the best to you. May the healing continue.

    •  My dear mimi. This is an extraordinary comment (2+ / 0-)
      Recommended by:
      4Freedom, ZenTrainer

      from you (and please believe me, you are a fine commenter despite your protests to the contrary). I am deeply grateful to you for sharing your insights with me, both those you acquired in accompanying your niece and those you've learned through other experiences.
      Listening to that small inner voice is indeed essential. I haven't the greatest history along those lines, frankly. I hope I have the courage and the clarity to do that when it matters most.
      Thank you for the wonderful images of the cherry trees, too, and your best wishes. {{{{{mimi}}}}}

      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 Apr 09, 2013 at 12:59:29 PM PDT

      [ Parent ]

  •  Hey, darlin' - (6+ / 0-)

    we are both delighted beyond description with your wonderful news!  Wings asked me to tell you how happy he is that you got such a good report, and that you will remain in his prayers for full healing.  Mine, too, of course. :-)

    Secondarily, we're both honored and humbled by your words here.  When I started to read this to him, he was sure I was going to say that you couldn't have the necklace with you - you should have seen his face light up when I read him the passage about holding it in your hand.  Thank you, honey.  We're so happy that it helps you - but in the process, you've given us a blessing, too.

    Authentic Native American silverwork, jewelry, photography, and other art here.

    by Aji on Tue Apr 09, 2013 at 06:51:51 AM PDT

    •  Thank you, my dear friend, and thank you to Wings (3+ / 0-)
      Recommended by:
      corvaire, 4Freedom, ZenTrainer

      as well. Oh, I am really glad that you read through to catch that detail. It is important to me, it really is. My oncologist and her resident also admired the necklace; I made a point of showing them as well.
      Blessings have a way of growing and expanding, or so I believe. You know the Magic Penny song by Malvina Reynolds?

      Love is something when you give it away (give it away, give it away)
      You end up having more.
      It's just like a magic penny,
      Hold it tight and you won't have any;
      Lend it, spend it, you'll have so many
      they'll roll all over the floor....
      Love and hugs to you both. ♥

      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 Apr 09, 2013 at 12:32:27 PM PDT

      [ Parent ]

  •  to me, it's like screaming underwater. (5+ / 0-)

    I am currently sitting in a hospital room with my husband waiting for biopsy results on a rock hard lymph node.  They're looking for lymphoma.  He's had idiopathic thrombocytopenia for the last two years, resistant to all treatments. Then came anemia and repeated transfusions.  Two weeks ago, he was diagnosed with myelodysplastic syndrome and is considered high risk, likely to develop an aggressive form of leukemia.

    He's taking it better than I am.  I'm trying to maintain an outward appearance of being calm and optimistic, but it's like getting hit in the forehead with a hammer and never being able to catch your breath.  

    •  {{{{{lost my ocean and husband}}}}} (4+ / 0-)

      I am so terribly sorry that he and you are facing such a challenge.
      I can appreciate that "never being able to catch your breath" feeling (well, and the hammer thing too). I will send my best wishes for the best possible diagnosis and treatment plan for him. May his doctors be both skilled and wise.
      Please feel free to come by any Monday you please. It's always a place for catch-up and sharing no matter the diary topic.

      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 Apr 09, 2013 at 12:37:01 PM PDT

      [ Parent ]

  •  Good for you PK! We need you around (4+ / 0-)

    I still have yet to make a motor city Kossack meeting, but I really would like to. I am very impressed with how you are dealing with all this

    An empty head is not really empty; it is stuffed with rubbish. Hence the difficulty of forcing anything into an empty head. -- Eric Hoffer

    by MichiganChet on Tue Apr 09, 2013 at 01:35:02 PM PDT

  •  Yippeee!! You are clear. (2+ / 0-)
    Recommended by:
    peregrine kate, ZenTrainer

    Now, young lady, you stay that way!

    I have some thoughts on how you might stay that way, if you would care to hear them. Kosmail me.

    I'm so happy for you and your family that you are still cancer-free. May you remain so!

    I would appreciate your vote for a DFA scholarship to attend Netroots Nation.

    by 4Freedom on Tue Apr 09, 2013 at 05:03:23 PM PDT

  •  YOW! (2+ / 0-)
    Recommended by:
    peregrine kate, ZenTrainer

    From a hubbie of a cancer survivor, your post brings tears to my eyes, espeically your postscript.  Reading good news like this gets me a bit emotional, for good reason.  Keep doin' what you're doin' and don't worry about your talismans, or whatever you're doing.  Sometimes, good results happen without any rational reason for happening... My thought, before I got a lot less tradional about healing, and sprituality, was 'doesn't hurt to do it, might work, and the more we throw at it means that something may do some good'.  

    Outstanding news.

    •  It is a mystery, isn't it? I am simply grateful (2+ / 0-)
      Recommended by:
      ZenTrainer, lost my ocean

      that whatever is working, is doing such a great job by me. No plans to change anything for the time being, I assure you.
      Delighted that the "try anything" plan worked for your wife, too.

      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 Apr 09, 2013 at 06:15:54 PM PDT

      [ Parent ]

  •  First of all, PK, (2+ / 0-)
    Recommended by:
    peregrine kate, ZenTrainer

    that is great news about the scan!

    This diary resonated with me on so many levels. Yesterday was moving day for the Smiths, so we were without internet for 36 hours. Oh, the torture. Anyway, I am just now back online and checking in on MNCC.

    I am impressed by the clarity of your prose, especially since you wove together stories related to gifts, talismans, and philosophy.

    I have multiple myeloma, a blood cancer of the plasma cells in my bone marrow. My treatment currently requires monthly lab visits to measure the status of the disease and its effect on the balance between my white, red, and platelet blood cells. So, I see my doctor often.

    Recently, I changed doctors. My small town does not have a resident oncologist. My previous doc and I got along well. When his contract as visiting oncologist expired, he chose to concentrate on his practice in Portland. He is approaching retirement age and thought it was time to discontinue his weekly commute along the treacherous Columbia Gorge Highway.

    I have been an easy patient for this doctor. My cancer continues to be stable following a stem cell transplant in 2008. Nonetheless, there is always a slight trepidation as I go for a consult following the monthly lab tests. Yet, for nearly four years I never had what could be called a "bad" lab. The numbers have fluctuated and we have tweaked things, but basically his philosophy is "less is more."

    I appreciate this work ethic with respect to my treatment. At my final appointment with him after Thanksgiving, I gave him some bamboo wind chimes in appreciation of our patient/doctor relationship. Now, I hope when the breezes stir them he will think not only of me but of his own good soul.

    Thank you PK for the inspiring diary.

    BTW, my wife is a Michigan alum. All our dishes are still in boxes and, of course, we had no TV due to the move. We went to a local sports bar for the game. Though Michigan lost, it was a thrilling game decided by good play, not mistakes or referees. Well done Blue!

    •  Good to see you, jes, and I hope that the worst (1+ / 0-)
      Recommended by:
      jesmith2

      of your move is past. 36 hours! I'm honored that checking in here is early on your to-do list.

      I like the "less is more" approach; makes good sense to me. How kind of you to give your doc a farewell gift, and such a lovely one to boot. May your new doctor and you establish just as solid a rapport, and just as effective a treatment regimen.

      Yes, it was a good game. Louisville was the stronger team in the end, but UM played well. Hope it won't be quite as long a wait till next time.

      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 Apr 09, 2013 at 10:05:44 PM PDT

      [ Parent ]

  •  This is not the group I thought I would be (3+ / 0-)

    Following. ;-) no offense.  I just stumbled on this group and you Kate, last night, after getting home from a breast biopsy.  Yes, it was positive for breast cancer, details not known yet.  Just found out tonight from a late call from my doc.  From the first contact following mammogram to my doc's call tonight, I was certain it was cancer but had no 'reason' for that belief.  Who knows. The few I talked to would want to reassure me that of course I would be fine.  That was not reassuring but I understood where they were coming from.

    Funny to be on Daily Kos, talking about my brand new cancer diagnosis. It would be more fun to be in the 'sluts' group or even the Social Security group. I found those groups looking for this group.  I had no idea how many groups we have here.  I don't know who I'm writing this too.

    But hello to you all.  And I'm OK.  I'll be back now that I'm one of the club.  I have a journey ahead - maybe easy, may be hard.  I work full time, self employed, no sick time. but I'm 70. I could cut back. I love my work as a psychotherapist and I'm busy. I'm wondering how I will manage that, like 6 weeks of radiation.  Reminder to Sydney: one day at a time.

    The 'shift' is hitting the fan.

    by sydneyluv on Tue Apr 09, 2013 at 08:21:13 PM PDT

    •  Hi Sydney. Glad you found us, sorry you are here. (1+ / 0-)
      Recommended by:
      peregrine kate

      You might look around to see if there is a Gilda's Club nearby you. They provide great support and resources.

      If they don't have one Kate can give you the name of the support group she uses.

      I had stage 2b breast cancer, Estrogen positive. Slow growing so I had time to get 2nd opinions on everything including the path report.

      I also had time to decide on a treatment plan that was right for me. That meant no chemo, no radiation, and no tamoxifin. I chose a lumpectomy only, no radioactive dye and even controlled the type of anesthesia used.

      Two years later, except for my allergies to this beautiful spring, I am A-ok.

      Several of the women I am in groups with at Gilda's are working during radiation. It just depends on what you do for a living (as a dog trainer it wouldn't have been possible for me to work) and how your body reacts.

      But hang in there, come back to see us and I am so sorry for your news. Oh and the American Cancer Society has a hotline that you can call any time. I've called them at 3am before.

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Tue Apr 09, 2013 at 08:53:55 PM PDT

      [ Parent ]

      •  I was hoping that you would reply to sydneyluv. (1+ / 0-)
        Recommended by:
        ZenTrainer

        Thanks for this excellent start on info and resources, ZT.

        sydney, I'm going to Kosmail you (tomorrow) besides, since I think we have some other factors in common.

        I too am sorry that you are in this group, believe me, and I take no offense that you'd rather it be otherwise too. But now that you do have to deal with it--there are lots of people here who can offer support and suggestions, FWIW, and soon you'll find your footing. Wishing you a very low stage and grade, and skilled as well as wise medical providers.

        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 Apr 09, 2013 at 10:02:12 PM PDT

        [ Parent ]

  •  I actually slept last night pretty well. (0+ / 0-)

    It is a small cancer, 8mm on the mammogram and its early. I'm curious about why Zen didn't follow the usual treatment recommendations.  Well I just have to wait until Friday when the test results will be in, I see my doc (who has had BC) and then begin to plan my forward path.  I think I have a lot to learn.

    Thank you for your thoughtful and warm responses.  I did enjoy your diary on Monday night Kate, but I find I don't want to read much today.  I do need to take this one day at a time.  
    There is a Gilda's Club near where I live (Royal Oak) and I will keep that in mind.

    Most pressing for me right now is telling people, especially my kids and some of my friends.  I get anxious just thinking about that.  But I'd like one of my daughters to go to the doc with me on Friday.  And I know I need to tell them.

    I am a deeply spiritual person and I consider this diagnosis simply a part of my spiritual path, which for all of us has rocky times.  Leonard Cohen: 'there is a crack, a crack in everything, that's how the light gets in.'  Now I get to continue my growth on integrating my practice, and be open for more light.  I noticed even this weekend with my granddaughter (believing that this was cancer before the dx), I thought to myself, enjoy each moment, Sydney, each moment.  Don't take moments for granted.

    Thank you again for your responses.  I will look for your kosmail Kate. You're from Michigan and started the SE Michigan group, right? Actually I really appreciate your responses!

    The 'shift' is hitting the fan.

    by sydneyluv on Wed Apr 10, 2013 at 03:23:54 AM PDT

    •  So I've talked to my adult children. (0+ / 0-)

      It couldn't have gone better! They were not overly reactive but were warm, supportive, interested, just wonderful. That's one concern I can check off my list. One daughter is going with me to the doctors on Friday.  I've also talked with a few friends and I'm moving along.

      The 'shift' is hitting the fan.

      by sydneyluv on Wed Apr 10, 2013 at 09:06:31 AM PDT

      [ Parent ]

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