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Before my last couple of CT scans, when I was hoping for continued improvement but hadn’t yet reached the point of “no evidence of disease,” I told myself that regardless of the outcome, I didn’t expect any radical or sudden change in my treatment regimens.

I meant that to be reassuring, since I had already found a fair measure of comfort in the routines that I had adopted, however imperfectly, and I was reluctant to feel rushed into making any decision to change treatment even if the evidence seemed to indicate a change would be advisable. I have been seriously spoiled by my only prescribed treatment from my MD being daily hormones, and not having to cope with anything more strenuous than chronic fatigue. (Let me hasten to add—constant fatigue isn’t a pleasant state, but from what I can tell, my level of fatigue isn’t nearly as bad as that of many who have to cope with CFS or the like, and my symptoms related to cancer & cancer treatment are also nowhere near as bad as they could be.)

Fortunately, all my disciplines and all my medications appear to have been effective, since I’ve achieved this lovely state of remission. The emotional aftermath of that news is not quite what I anticipated, however, all the same. I suspect that in this way I am in a similar situation to that of Carol of San Antonio, who acknowledged recently when test results were better for her than expected that “Yeah, the good news threw me for a loop.”

Please follow me below the curlicue for more on my peculiar reactions to being officially in remission.

First of all, I’ve been very strongly motivated to take care of (old) business that has been waiting in the wings while I concentrated on my recovery and on my daughter’s stability. During the past 18 months, many ordinary tasks have simply fallen to the bottom of our household to-do list. My DH has been too busy picking up the income-earning slack; my oldest is in law school; my youngest has health issues of her own. I did have a wonderful garden clean-up crew help out last September, without which the whole yard would have been much less appealing this spring. Still, the house is festooned with cobwebs, the gardens are now drowning in weeds, the basement is still full of boxes to be unpacked and sorted, and my personal filing is pathetically disorganized.

Is this significantly worse than it always was, before my diagnosis? Yes and no. Yes, because of the dramatic increase in medical and health-related documents and resources, which have taken over several shelves in my office, and because I think I “ought” to have more discretionary time than I did when I was working full time. No, because I’ve not ever put a very high priority on domestic order. On the other hand, while I’m not any more inclined to be more dedicated to daily household maintenance, I’m much more interested in purging clutter of all sorts (if that distinction makes sense). Put another way, the routine chores are just as unappealing as ever, while I am driven to get through the piles of paper on every level surface. Now I’m hoping that my energy will keep sufficient pace with my drive to get my files in order, my old correspondence advanced, and my back stock of junk eliminated, one way or another. My belief is that once that is done, some of the day-to-day will be easier too.

Second, my rebounding health manifests itself in a desire for more day-to-day pleasure, or at least relaxation. I simply don’t want to return to a grind of work without the leavening of conversation, or a walk outside (when temperatures permit), or a mini-adventure of some sort, on a regular and sustaining basis. That feels selfish in some regards, since I know it’s a relatively rare privilege NOT to have to concentrate on earning a living to the exclusion of almost everything else. But one way or another, I lived that way for many years, always deferring fun. I don’t think it was good for my physical or mental well-being, and I’m not willing to do that any more.

Part of the trick now for me is defining exactly what kind of “fun” is restorative and regenerative. When you’re like me, someone who isn't in the habit of encouraging myself to have fun on a daily basis, that’s a more difficult question than it might seem. I’m working on that, truly. It’s not exactly a “bucket list” kind of concept, not a matter of accomplishments or projects to mark off a list. More of seeking to understand what really makes my heart sing, and then ensuring that I do that, every day.

Third, I have to think and feel my way through what this new status means to me. I’m not entirely convinced that this finding of remission means my cancer is gone for good (though I certainly hope it is, and I intend to act as though it is until I have hard evidence otherwise.) It definitely feels like a reprieve. One of the worst reactions I had to my diagnosis was the sense that I had lost my future—that there was no longer any possibility of making plans or of dreaming about better things to come. Now, I have it back, albeit differently. Certainly I don’t feel as invincible as I did two years ago. Am I grateful for the opportunity to see things differently? Maybe--probably. I’m not sure yet. Again, I need to practice what formulating dreams might entail. I’d fallen out of the habit, I must admit, and didn’t really realize what I'd lost until I found the entire capacity to be at serious risk.

Fourth, I have found to my surprise that I DO need to gear myself back up for compliance with my health-care routines. Basically I’ve played hooky for the past three weeks—not a bad thing, under the circumstances, but probably not productive in the long run. So I’ll be re-evaluating what I’ve been doing for the past few months to see what’s staying, and what’s not. I’ll keep you posted on those decisions as they emerge.

I am very, very grateful to be in this position, don’t get me wrong. But, as with everything else in life, things are more complicated than they seem. At least that’s the case for me!

Before I open the floor to all of you, with a specific list of prompts, I’d like to direct you all to one more lovely and gracious comment from shadowplayer’s wife, Denise.  As kind and thoughtful as her husband, she sent me a Kosmail to let me know that she did stop by to read our salute to her husband last week, and that she wanted to say thank you once again (which she did at the end of the comment thread from the MNCC diary last week). In that comment, she leaves a very beautiful tribute of her own: "The cancer ended his life, but it didn't win."

I encouraged her to come by whenever she likes, and I said there may well be more messages left for her and for shadowplayer in the wake of her latest comment.

Peace and blessings to all, wherever we are.

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

  •  Even if not in remission, how have you responded (30+ / 0-)

    to good news? Has it been harder—or at least different—than you expected to hear good results?
    What changed for you, if anything, in the wake of it?

    For those of you in remission, is it different to be in remission and to keep going? Does there come a point when you take it to be for sure, and that you're done with the cancer?

    For those of you who have been in and out--did you have any clue beforehand that things were worsening?

    Curious, always curious ;)

    Thanks, my friends, for sharing your experiences to whatever extent you find appropriate and comfortable.

  •  Request for MNCC diarists! (17+ / 0-)

    Our schedule:
    July 23--Betty Pinson, on cancer advocacy
    July 30--open
    August 6--smileycreek, on imerman's angels
    August 13--open
    August 20--coverage needed, I'll be away
    August 27--open
    September 3--open

    Please send me a Kosmail if you're interested; I'd love to have more diarists to share the wealth (so to speak).

  •  Last month (19+ / 0-)

    My mom got the family together, and made an announcement that was obviously a prepared speech - something she'd been thinking about for awhile.  She had us all then meet with her oncologist/PI for the clinical trial.

    She's decided to stop the clinical trial.  He gave her 2 months to change her mind before she'd be permanently dropped.  About 6 weeks have passed since her last treatment, so she's likely to be sticking with it.  Thing is, she's really tired of fighting, and says palliative treatment is the way she wants to go now.  And she does have other issues, particularly heart problems, lung damage and tons of arthritis including throughout her spine and quite a few joint replacements.

    He told us they don't have any experience about what happens if their treatment - an immune system tweaker (that includes itchiness as a side effect amongst others) - is discontinued.  He said it could be a month or two, could be a year or two.  Terra incognito.

    It's been nearly 5 years since she was diagnosed.  Quite the emotional roller coaster along the way.  The best I hope for at this point is a minimum of suffering and drama.  (Which would definitely include her dying without killing someone while driving first.)

    Grab all the joy you can. (exmearden 8/10/09)

    by Land of Enchantment on Mon Jul 16, 2012 at 05:25:08 PM PDT

  •  As I believe I mentioned to you privately, (13+ / 0-)

    I lost my mother to kidney cancer a couple of months ago. So my life in many ways was also suspended and became disorganized. I have papers everywhere in my house now and I just purchased a nice shredder to help me as I sort through them. One trap I feel like I have fallen into is that I can't be happy until everything is organized and "back to normal." And so it becomes a heavy burden. The scattered papers are a constant reminder of what I haven't accomplished or how far behind I am. It makes me feel inept and sad.

    I suggest that you find something pleasant to enjoy while you do this organizing. Keep the organizing secondary. Listen to some new music while you sort. Read a book and take breaks to organize a few papers. Escape the notion of burden.

    Along those lines, I recommend Buddha's Brain. I love this book and it has helped me to refocus on finding true happiness. This entails less of "seeking carrots" and "avoiding sticks." It's actually quite more deep than that of course. I find the material beneficial. There are actual, simple exercises to employ which I have found to be meaningful so far. It helped me to not to formulate and chase after a "bucket list" as it were, as if that were some formula for an ultimately happy life.

    Kudos to you. :)

    The man who moves a mountain begins by moving away small stones. -Confucius

    by Malachite on Mon Jul 16, 2012 at 06:19:17 PM PDT

  •  You are such a great writer Kate! (16+ / 0-)

    I'll pick one point for now. The cleaniness and organization of my house.

    It is a mess. For a while it was physically impossible for me to do the heavy lifting so to speak.

    Then it was emotionally impossible.

    Now I am pretty stable. Not in remission, recovered for all anyone knows.

    So why is my formerly spotless and tidy house full of dust, dirt, grime and clutter?

    Part of it is me prioritizing. I only have, say, a half an hour and look how cute the cats are all lying cuddled in the bed. I could clean or stop and love on them.

    Or, I have only an hour of down time and watching TV would feed my soul more than cleaning.

    But I am beginning to feel a bit of imbalance. I really am happiest when my surroundings are clean and in order. It makes that hour of TV much more enjoyable.

    So, ever so slowly I am cleaning it up, while still making time to pet the cats and watch TV.

    As with everything it's all about balance.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Jul 16, 2012 at 06:24:58 PM PDT

    •  Balance--prioritizing--so simple, and so hard! (11+ / 0-)

      The task of a lifetime, no?

      I think that sometimes I get suckered into the idea that having cancer will be transformative. Hmmm, maybe. But usually I think more about "wherever you go, there you are." At least for me.

      In your case, since you have a baseline of order and cleanliness, that's a good sign that you'll get back there. For me, it's a matter of establishing new habits (although I'm also quite invested in doing just that).

      TYVM for the compliment, my dear!

      Love on those cats for me, too, OK?

      PS--Speaking of to-do lists, we've gotta start a topic list. There are a couple I know you've mentioned recently that would be excellent, and other ideas have surfaced from other comment threads, too. Hope to chat with you soon.

  •  This is for Shadowplayer's wife, Denise (14+ / 0-)

    I left it as a reply to her comment, also, but want to leave it here in case she comes here looking.

    "I encourage you to listen to the Dead concert from 12/27/87, which is available for listening online as streaming audio. Listen to the version of "Uncle John's Band" played that night, because it was played as a memorial to someone the Dead would have respected but whom they never met. I suspect that description also covers Shadowplayer.

    (The specific person was my father. I gift it to you.)"

    Organ donors save lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me. Please talk with your family about your wish to donate.

    Why are war casualty counts "American troops" and "others" but never "human beings"?

    by Kitsap River on Mon Jul 16, 2012 at 06:26:37 PM PDT

  •  {{{Shadowplayer's Wife}}} (9+ / 0-)

    Dear pk, thank you so much for linking to Shadowplayer's wife's comment.  She wrote:

    A song that I am getting much comfort from these days is by a group called Sweet Honey in the Rock, the song is “Breaths”. The lyrics, in part: “Those who have died have never never left. The dead are not under the earth. They are in the rustling trees….they are in the waving grass….they are in the moaning rocks…the dead are not under the earth.”
    In honor of Shadowplayer's wife, here is Sweet Honey in the Rock's "Breaths"
  •  This is great stuff, as always (9+ / 0-)

    ZT is right. You are a fine writer. I especially appreciate the insights about prioritizing, fun, and order. You know that I'm fun-challenged (don't know much about how to have it), but I am grateful for your patience while I try to learn!

    Let us love one another while the light lasts.

    by ProvokingMeaning on Mon Jul 16, 2012 at 06:53:26 PM PDT

  •  Too much energy! (5+ / 0-)

      Once I recovered from surgery I was anxious to get back to my routine, and I felt much better when I found I could do it. Chemo forced an adjustment on how much work I could do outside of school. When chemo finally ended I was just going wild with projects. With one kid out of college, one in college and one at home I had plenty to do. Dad is still Mr. Fixit, from cars to carpentry.
       One activity that got lots of attention was my youngest daughter's involvement with horses. We had to keep them at my house (in a barn of course) as there was no money to board. I promised her that as long as she wanted to mess around with them I would help take care of them. The only thing I managed to learn about horses was how to take care of them.
       Priorities center around my family's needs and I'm happy to be around. I miss teaching (especially the kids), but I don't miss going to school.
       Eight years ago I was sucking up the 5-FU. I'm happy to be a statistic.
       Still love you PK.

  •  Good evening all. I hope everyone is able to (5+ / 0-)

    stay comfortable in the heat. Mom is coming along in her recovery from the surgery. Still tires easily, but she will actually lie down for a nap. As to your topic, relaxing, I have to say she is learning that,too. She was never one to ask for much help, would rather do it herself. Yet she was thrilled when we pooled some money to have her house cleaned before some relatives came for a visit. Sometimes it's the small things that mean a lot.

    Oh for crying out loud!

    by 4mygirls on Mon Jul 16, 2012 at 08:14:34 PM PDT

  •  Well, my friends, it's my bedtime. (3+ / 0-)

    Past, actually. I'm glad to have seen those who have checked in this evening!

    It may be time to take a summer hiatus. I'll let you all know as best as I can if that comes to pass one of these weeks (or so) soon. But between today and next Monday, to start, I wish you all good health and good company.

    Peace out....

  •  Thx for this Dairy (7+ / 0-)

    Hi Kate, and all.

     My names Dennis. I've been following this dairy in particular because, I'm a Mantle Cell Lymphoma patient and i'm pretty sure the umm .. we call em wingnuts here right? well, pretty sure I'm pissing them off by not dying faster.

     soo, thats why I stopped in.

     Remission is a wonderful thing. To know that you're probably gonna be around for awhile, for awhile; is a very liberating thing. You dont have to do chemo anymore, which is by far the best thing about remission; but also to know that don't have to spend all your energy just to stay alive, means you can do other stuff! Other stuff is cool.

     I've been in remission about 2 years now, I think (the chemo messed with my brain a bit). My doctor tells me 1 of 4 do live this long, soo.. yea for me! Yes, yea for me but it's tinged with a saddness about the 3 who didn't.

     Remission hasn't changed how I respond to anything. It's the diagnosis that changes everything. Everything is different.
    I haven't changed that much since my diagnosis really except I'm even more patient with people, even more forgiving. Plus it ended my depression! thats right, cancer can cure depression! but it's not a therapy I would recommend. Some things seem not so important anymore and mostly, I just don't have the time for it.
    No, I haven't changed much but the world has. Everything seems more vibrant somehow. It's funny how you feel closer to everything, like you're more a part of everything.

     Cancer changes everything. Even the best news has a bit of bittersweet, but the joy is still there. In a way it's an even better joy.
     Remission lets you play! Or at least for me it does. no more chemo, enough strength to do stuff, it's been very relaxing and fun. Fun is good, cause chemo ain't. My doctor tells me my cancer WILL come back so I can't speak to the being sure it's gone thing, though I would imagine with each passing day thoughts of cancer would creep in less and less often.

     I dread the day they tell me my scan wasn't clear, or I find a lump or some other symptom, soo .. I won't think about it or worry about it. I figure, I just don't really have the time for it.

     Here's a few smiles I'd like to share.

     I owed a friend money when I got the diagnosis. I told him I wanted to pay him back in full before I die, but have to make monthly payments. We started out at $50 a month but we're down to $1 a month now.

     I told one of the nurses I just wanted them to keep me alive till the election, she said 'well, thats depends on who you're goning to vote for'

     When my mom was going thru her cancer treatments she was very mean to staff, one day I took a nurse aside and told her I was suprised they hadn't thrown her out a window yet, she said 'oh no Dennis, we'd never do that! we have much more subtle ways'.

    Wish you all the best of luck dealing. Be stubborn. And walk as much as you can.

  •  Be Positive (3+ / 0-)

    PK - thank you so much for your article.  Personally, I found I had to let go of all my anger and I had a lot of it.

    Now I'm positive about everything and don't worry about the cancer.  Whatever happens happens, but I'm starting to take a more Eastern view on the matter as per how energy flows in my body and again anger disrupts this flow.

    So I do a meditation every day where I envision all negative energy (cancer, anger, doubt) falling out of my spine onto the ground.  This is working well for me and I am very healthy now.

    Most importantly I am happy.  So keep your chin up and believe or better yet know that you will be well.  I think thought is energy and therefore the more positive one's thoughts the better one's health.

    •  excellent advice (3+ / 0-)
      Recommended by:
      peregrine kate, bcdelta, ZenTrainer

      just as I believe cancer can cure depression, I believe depression can cause cancer.

      attitude means alot in life.

      I think your visualization of wellness is right smack dab on target.

      For me, I sat down and had a cell to cell talk with myself.
      I reminded my cells that the cancer will kill all of us and that they were in the best position to fight it. So I told my body to go after the cancer aggressively. I told my cells that they knew what it was and where it was and to go hunt it all down and kill it!

      scientifically we know that there are many and varied triggers for turning on parts of our dna, be it for good or bad. Who can say what level of control we truely have?

      I'm told by the Doc's that positive thinking stubborn people seem to have greater survival rates.

      So perhaps my life long progressive liberal attitude is helping keep me in remission.

      After all, isn't stubbornly postive a self evident character trait of the liberal minded?

      I very much liked your comment bddelta, ty.

      For truely they are 'words to live by'

      •  I appreciate your perspective, d58, (2+ / 0-)
        Recommended by:
        bcdelta, ZenTrainer

        especially that cell-to-cell talk. I agree, it's the body that heals, and everything we do to it is only an aid to that end. No telling what we can or can't do.

        I know, I know, it's risky to say something like this and still avoid charges of "blaming the victim" which in this case would be the person beset with cancer.

        My position is more agnostic. We don't know how much we can accomplish on our own behalf, so why not give it our best shot? We are each such phenomenally complex beings, ultimately there's no telling why one makes it through and another doesn't. (With a condition like cancer, which is our own cells in disarray, that seems even more important to acknowledge than when dealing with an infectious disease, an outside force in effect. Although I will add another caveat since it appears to be the case now that several cancers are themselves the result of viruses, which complicates the overall situation even as it may make some types more amenable to  prevention, as with HPV.)

        I don't think that people who survive longer or against higher odds necessarily have more discipline, more control, or a stronger will to live. Or that they are happier, with more to live for, etc. etc.  I don't think we have ways to measure any of those qualities in any case. It's just that we are meaning-seeking creatures, and we look for explanations that make sense to us.

        I think survival depends on multiple factors, some of which are indeed--e.g. inherited vulnerabilities, or exposure to environmental toxins--outside of our control. Other factors, including access to good care, access to good food, access to good rest and support for healing, are often deeply affected by one's socio-economic status (which is a terrible injustice, IMO). (And just to be very clear, sometimes the toxic exposures are part of this injustice too.) Still, to me, it makes sense that we attempt to leverage everything we can. And no one, but no one, ought to sit in judgment over anyone else facing this grim circumstance.

        More power to all of us in our individual quests!

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

        I think another component is supporting one another and not just for cancer.  I would also say what can one learn from any duress as we all go through it in one form or another.

        About 10 years ago I held the position that people without HC got treated anyway so we didn't need to expand it.

        Keep in mind I never was sick or used the medical system for anything.

        I fully admit now that my position was formed out of ignorance even though I had begun to moderate my position before I got sick.

        Then I lost my job, no insurance and got sick.  So I learned it the hard and very painful way that my position was utter rubbish.

        So having cancer has made me very compassionate to those with less, which I think is very positive.  Maybe I needed to get the cancer to increase my level of compassion.

        So I always try to see the positive in things or what can I learn from it.

    •  Your meditation work is inspiring, bcdelta; (2+ / 0-)
      Recommended by:
      bcdelta, ZenTrainer

      I like the "lovingkindness" practices myself. Especially as applied to myself!

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