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During this stretch of winter I imagine that I will always be mindful of the events of two years ago, from my cancer diagnosis on January 20th to my surgery and staging on February 22nd. Perhaps “mindful” isn’t quite the right word, because in truth during that month I was not paying much attention to the cancer per se or what it might portend. Instead, I was thinking about my work obligations and how best to set things up for them to make it easy for my employers during my six weeks of medical leave.

Very little turned out how I expected, in fact. The surgery showed a much more advanced cancer than anticipated. I was basically fired instead of being welcomed back to work, with accommodations for chemo. And on, and on.

I do have some other topics planned for the next couple of weeks which will not belabor my anniversary season. But for tonight, I invite you to look back with me at how things were for you when you first started having to deal with cancer.

If you are inclined to share your diagnosis, dates, treatment(s) and current status, that’s also fine. I’ll list mine below. What I am more interested in learning from you, however, is the difference between what you planned for when you first heard the bad news, and what actually happened when you got in the middle of things. Come to think of it, I have one more general question to ask, if you don’t mind: what do you currently find to be the most challenging aspect of dealing with cancer? Or the top two or three, if limiting it to one just won’t do?

All right. Here’s the rundown on my diagnosis and treatment; my apologies in advance to those who are already familiar with it. I received a diagnosis of endometrial cancer on January 20, 2011, had a hysterectomy on February 22, and learned thereby that the cancer had spread to my para-aortic lymph nodes, making it a Stage IIIC2 cancer (just short of Stage IV). I had six rounds of doxorubicin and cisplatin between March and August, 2011, and was headed into external pelvic radiation when lung mets were discovered. At that point, radiation was moot and my oncologist suggested a hormonal treatment, Megace, instead. I began supplementing that allopathic treatment with several complementary therapies, including Ayurveda, acupuncture, yoga, qi gong, deep breathing, and singing. (For a while I was also a vegan, and I had some Reiki sessions, but neither approach is now in my active repertoire.) My lung lesions began to shrink almost immediately and I officially achieved NED (no evidence of disease) status in June of 2012.

What I planned for, and how it was different from how things turned out—please read on after the jump.

I thought at the time of diagnosis that the surgery would address the cancer, that it would prove to be small and contained, and that no further treatment would be necessary. I thought that my employers would make reasonable accommodations to deal with my chemotherapy treatments, once I learned they would indeed be the next course of treatment. (And yes, at the time I did not consider refusing chemotherapy.) I thought that chemo would be arduous but not all that difficult overall. I thought that having cancer would be a relatively short interlude in my life, and then I would get back to my old routine and my old self.

I certainly hope to have learned a little humility through this experience, since indeed nothing turned out as I expected. Now, I will admit that it is probably also just as well that I no longer follow the routine I had before I became so ill; in retrospect, I have no idea how I managed to do it, except through lots of caffeine, junk food, lack of sleep, stress, and denial.

I think I have two major issues facing me right now as my recovery continues. The first concerns our finances. I’m not sure what financial stability will mean for us in the next year, let alone in the next five or ten. We manage month-to-month, and for the time being that will have to do. I suppose I am a little more sanguine about our precarity than I once was, but it continues to be seriously stressful for both my husband and me. I need to start bringing in some regular income, even if it’s small.

The second is resisting complacency since I have achieved remission. All around me—in my support group, in my online discussion boards—I see people who were doing well at one point and then had a relapse. Of course, people who participate in such groups are a self-selecting cohort; few people who do reach the all-clear and then sustain it hang around cancer support networks. So that skews the pool, I realize. On the other hand, there are also those who had the all-clear, and then suddenly experienced a recurrence which they were not able to beat. Our own alliedoc is an example of the latter situation.

In other words—I have a lot of external reinforcement for staying on top of my rehab program. Internally, it’s not as easy to maintain my focus when the goal I am pursuing, continued remission, is in a way so amorphous.

That topic may well be one worth discussing all on its own, but for tonight I’m content just to leave you with these two major questions: What did you expect at first? What are your biggest challenges now?

Please feel free to respond to these as you see fit. Let me also remind everyone that the diary topic is not intended to exclude discussion of other issues that are pressing for you.

We have two MNCC members who are undergoing lung surgeries this week: murasaki today, and DarkHawk98 tomorrow. (Here's the link to DarkHawk's diary about his quilt, with photos!) I will be keeping them both in my thoughts and prayers. If you are inclined to send virtual support to them in any form, I imagine they both would appreciate it.

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Comment Preferences

  •  If I'm not immediately in the thread tonight (22+ / 0-)

    it's because I'm on my way home from a school meeting about the possibility of a major change in scheduling classes at my daughter's high school. I'll be here as soon as I can. Have fun in the meantime! Please, that is. :)

    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 Feb 04, 2013 at 03:23:10 PM PST

  •  Back now.... (11+ / 0-)

    The thread is now officially opened.
    (Good meeting if inconclusive)

    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 Feb 04, 2013 at 05:48:14 PM PST

  •  Well my cancer went sort of the way I planned. (14+ / 0-)

    Except that I never planned to get cancer of course.

    To begin it was a fog though, without insurance it took a long time (like a month) to definitively diagnose.

    But even that went smoothly. A friend told me of a clinic for the working uninsured poor. That clinic sent me to another free clinic. That next free clinic was pretty sure I had cancer and set me up with temporary free insurance and a surgeon.

    The surgeon set me up with TN Care (our states sort of socialized insurance).

    By the time I was diagnosed with stage 2b estrogen positive breast cancer I had had time to explore my options for treatment.

    Because of my personal philosophy on life I already knew  chemo and radiation were not things I was going to try. So then it was just a matter of being assertive and doing things (including surgery) on my timeline.

    As much as I liked my surgeon he doesn't normally take out lymph nodes wait for the path report and then continue. So 10 days after my lumpectomy I had to go back in and have 7 more lymph nodes removed. (The first 2 were 90 and 95% cancerous.)

    Things really did go as I expected. I knew I would have to argue with allopathic doctors about my treatment. I knew I would get grief for wanting 2nd opinions on everything and I knew the docs might be a bit taken aback by my interview peocess. (My current oncologist is the 3rd I interviewed.)

    I knew I would get Lymphedema as a side effect, I knew I would have to find resources all on my own. It's a shame I did but thank goodness I am the kind of person who can do it.

    My biggest challenges now are realizing that I am not the calm relaxed person I thought I was and trying to become that person.

    Also my immune system sucks and it was kick butt before this. It's been a little over 2 years for me now.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Feb 04, 2013 at 05:48:18 PM PST

    •  Again, I admire you for sticking up for yourself. (9+ / 0-)

      For that matter--for having such well-defined principles ahead of it all!
      I was not so pro-active, shall we say, until the chemo failure. Only then did I realize just how serious this was--truly deep shit--and that I had better get my ass in gear if I wanted to be around for much longer.
      I give credit to my husband and to my support group at the Cancer Support Community for encouraging me to speak up, speak out, and go looking for what felt appropriate. The social worker who facilitates our group (who has been in the field probably for 30 years) keeps saying as diplomatically as she can that the people who are assertive and pro-active seem to do better overall. (I know, anecdotes are not data.)

      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 Feb 04, 2013 at 06:03:48 PM PST

      [ Parent ]

    •  Not to be too nosy, but what makes you (9+ / 0-)

      want to be more calm and relaxed than you are now?
      Your online persona is of someone who sees things from a different angle than most, but I wouldn't describe you as edgy or up-tight. Just as someone who knows her own mind and who does not suffer fools gladly, as the saying goes.
      You don't have to reply, I know this could really put you on the spot.

      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 Feb 04, 2013 at 06:07:01 PM PST

      [ Parent ]

      •  Unlike many I am much nicer on line than in (11+ / 0-)

        person. You know, I have time to read my comments and change the "shoulds" to "coulds" to change "it is" to "it seems".

        In real life I speak before I think. Sometimes days before I think.

        My friends thought it was hilarious that I ever thought I was relaxed. It was the movement classes at Gilda's club that showed me how stiff I really am and how much stress I carry around.

        For sure the best things I can do to prevent cancer from coming back are to de stress and lose weight.

        I do cognitive therapy and my therapist has me writing down things to tell myself when I want to eat a bunch of junk.

        I tried it last week. It went like this:
        "I want to eat healthy so I can cross my legs"
        "Fuck that, I'm eating a chocolate"

        "I want to eat healthy so I can wear the kinds of clothes I want"
        "Too bad, I'm eating chocolate"

        "I want to eat healthy to live longer"
        "What's that got to do with chocolate? chomp... chomp"

        Today she gave me more tools to argue with this inner voice.

        Calm or nervous, I do amuse myself!

        Sara says the computer is bad for my headache so I am signing off.

        much love to all,
        Tracy

        Tracy B Ann - technically that is my signature.

        by ZenTrainer on Mon Feb 04, 2013 at 06:45:04 PM PST

        [ Parent ]

        •  Your internal dialogue sounds very familiar.... (8+ / 0-)

          I get verrrrry rebellious sometimes myself when I am arguing about what to do. Hmmm. Something for me to mull over as well. I will send you a link to an article about an approach that you might find helpful. I think there's something to it but I haven't yet tried to implement it.
          Maybe you can and let me know how it goes :D
          Sara is probably right, alas. Hope you're better soon!
          xo to you 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 Mon Feb 04, 2013 at 07:02:22 PM PST

          [ Parent ]

  •  Oh yes and I am thinking of murasaki and Dark Hawk (13+ / 0-)

    98. Good thoughts. Lot's of good thoughts.

    But I don't feel real well (sucky immune system) and am going to lay down for a bit in case you don't hear anymore from me tonight.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon Feb 04, 2013 at 05:50:37 PM PST

  •  First of all (12+ / 0-)

    I want to wish murasaki and DarkHawk98 success with their surgeries and recovery. Good luck with everything going forward.

    I have a blood cancer, Multiple Myeloma. At the time of diagnosis in 2007, I learned that this is an incurable disease with life expectancy of 3-5 years. That prognosis moderated with my own research but it took a few years to understand I might live up to 10 years... or more.

    Initially, I received oral thalidomide and a steroid, dexamethasone, in preparation for an autologous stem cell transplant. I was 61 at the time and working as a postmaster in a small Oregon town. I had decent health insurance and over my career had accrued 1 1/2 years of sick leave. I missed 8 1/2 months of work but was fully paid. My job was waiting for me when my recovery was complete. So, we took a hit financially but did not have to stress over the enormous treatment costs, which continue to this day.

    I had no expectations. I just climbed aboard the treatment train and rode it out. My wife and I lived in an apartment in Seattle for 3 1/2 months while I underwent the transplant procedure. It roughed me up pretty good physically but I never felt that my life was in danger. We managed to make the most of being away from home and much of our time in Seattle was entertaining as we explored city life.

    I responded well to all treatments. Now, five years into this experience, I take oral chemo and dex. The drugs are fraught with their own dangers and necessitate monthly blood labs to monitor the status of the disease and my physical condition. The cancer markers remain stable.

    I retired from my government job last spring. This makes management of the drug side effects easier. My quality of life is good. My physical condition is decent but changed due to the realities of aging and cancer. I maintain a strong connection with support groups and believe this keeps me grounded as to what lies ahead.

    The original prognosis proved wrong. Yes, MM is incurable and the current drug regimen cannot be continued indefinitely. There is no such thing as a free lunch: these chemo agents have consequences. Other options exist but, for the moment, we will stay with what I'm doing. MM, however, is among the highest researched cancers out there and several new drugs are in the pipeline.

    My biggest challenge is in planning for the "just in case" moment. I may survive several more years or the cancer may relapse. Eventually, this illness will have its way with me.

    Accordingly, my wife and I are attempting to move from our remote location to a place in town. She needs a more manageable homestead when and if I "kick the bucket."

    Overall, I have much to be thankful for. What I've learned from my numerous contacts, however, is that the make or break necessity to living with terminal cancer rests with the ability to pay your way. Health insurance opens doors to quality care without bankrupting your immediate and/or extended family. Eventually, we all get to face our mortality. It matters that you can do so with self respect.

    Thanks PK.

    •  Very hard to stay grounded in the face (10+ / 0-)

      of such news. I admire your commitment to doing what you can, when you can, and trying not to borrow trouble.

      Your place sounds beautiful. Maybe you will have enough resources to retain somewhere tiny in the wilds?

      Getting health care does remain closely associated with the ability to pay for it (or to have someone else do so). I recently attended a presentation by a social worker at one of the local hospitals with a large cancer patient population who said that "we will make it work" for people without insurance, and I do personally know of two people without insurance (and not sick enough/poor enough to qualify for public insurance) who have had good and complete treatment there. However--without KNOWING in advance that such an option would be possible, who would even ask? Not many, I suspect.

      Thanks to you for commenting tonight.

      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 Feb 04, 2013 at 07:08:00 PM PST

      [ Parent ]

      •  Hi PK. (12+ / 0-)

        I am OK with moving to town. We live in Hood River, OR and are surrounded by the Mt. Hood National Forest to the south and the Columbia River to the north. We are giving up true peace and quiet for some conveniences. It is the right thing to do.

        Of the two drugs I currently take, the steroid costs me $10.82 for a six week supply. The immunomodulatory drug, revlimid, is priced at $10,286.00 for a three week supply of 21 pills. That is not a misprint. I am out of pocket for an $80 copay for this specialty medication. There are options to assist people without insurance or inadequate insurance. However, it's not free and, as is the case for me, most protocols call for three years of usage. The math is not pretty.

  •  I'm still in the early stages. (14+ / 0-)

    Diagnosed with Stage IIA colorectal cancer in October; had 6 weeks of radiation & chemo to shrink the tumor. That ended exactly 1 month ago. I'm amazed how good I feel now; I didn't realize how much energy the treatment was sucking out of me until it ended.  In fact, the last week it's been easy to forget that I have cancer. Or maybe I'm just avoiding it because I'm afraid of what comes next.

    Surgery is next; due to the location there's a possibility of a permanent colonoscopy.  I'm trying to decide between surgeons at Johns Hopkins and Memorial Sloan Kettering, like if I make the right decision it will turn out all right, but if I make the wrong one I'll get zonked like on Let's Make A Deal.  Truth is, both are highly respected surgeons at great hospitals.  I'm very fortunate to have very good health insurance and a very understanding workplace, and I'm lucky to have such good choices.

    6 months of chemo is apparently what's after surgery, and - if everything goes OK with the 1st one - a second surgery after that to hook everything back together.   So 2013 looks to be the year of cancer treatment, and I plan to have it behind me by 2014, but best laid plans and all.  I was scheduled to run the Goofy at Disney World last month - a half-marathon on Saturday followed by a full marathon on Sunday - but I had to defer due to the radiation.  But I fully intend to run it January 2014.  I'm not a great athlete, I don't run fast, but that is what I've set as my goal to see me through the next year.

    Hugs and healing thoughts to everyone going through treatment.

    Let us never forget that government is ourselves and not an alien power over us. The ultimate rulers of our democracy are not a President and senators and congressmen and government officials, but the voters of this country. - FDR

    by Jeff in PA on Mon Feb 04, 2013 at 06:40:48 PM PST

    •  I know several people (9+ / 0-)

      here that do the Goofy every year with Team In Training!  I've done a full and a couple of halfs, but not together!!

      Good luck with the Goofy!  That really rocks!

    •  I am not a doctor, but I cannot help believing (11+ / 0-)

      that your baseline fitness has to be a good feature for you now. It does take a lot to push back against cancer, and having stamina and the knowledge of how to pace yourself are really valuable attributes going into treatment. I'm sure you've already heard the comparison more than once (the resemblance of treatment to getting through a marathon) but there is some wisdom in it, I suspect.

      Making a decision about surgeons--does it then tie you to that facility for treatment? How do you feel about both places? What are their policies? Does either one do chemo sensitivity assays of the tumor cells? Have you toured the chemo facilities?

      There are actually two very "successful" cancer centers in my little university town; one is a NCC and the other is highly respected, with most oncologists at one having dual appointments. The atmosphere is very different between the two of them in more ways than I can count. I am at the more upscale one, which is also the larger and more bureaucratic one, but sometimes I wonder if the smaller and more cozy one wouldn't be a better fit. Since the staff are so similar, I doubt there are many substantive differences in outcomes.

      Anyway--you didn't ask for advice on this, and you are quite right, they're both fine, highly rated facilities. Good luck with making your choice and getting on with your recovery, and getting back to training.

      Next week, if all goes as planned for me, I expect to write here about my own recent return to vigorous workouts, a therapeutic approach which I hope you'll want to comment on as well.

      Thanks for stopping in; hugs and healing thoughts right back at you.

      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 Feb 04, 2013 at 07:24:54 PM PST

      [ Parent ]

      •  Thanks for the advice. (5+ / 0-)

        I haven't heard of chemo sensitivity assays before - I'm one step at a time and currently was just focused on the surgery - but I will add that to my list to investigate.

        Let us never forget that government is ourselves and not an alien power over us. The ultimate rulers of our democracy are not a President and senators and congressmen and government officials, but the voters of this country. - FDR

        by Jeff in PA on Tue Feb 05, 2013 at 04:16:55 AM PST

        [ Parent ]

        •  That's coming up in my diary on The Politics of (3+ / 0-)
          Recommended by:
          peregrine kate, hazey, corvaire

          Cancer. They are routinely done in other countries. In the US they can be done on request, not sure if insurance pays and it's about 5k.

          But without it they are just guessing as to what type of chemo might work.

          Tracy B Ann - technically that is my signature.

          by ZenTrainer on Tue Feb 05, 2013 at 07:43:36 AM PST

          [ Parent ]

          •  Thanks, ZT! Looking forward to it. (3+ / 0-)
            Recommended by:
            hazey, corvaire, ZenTrainer

            The assays are even done more often in other parts of the country (east and west coast, that is, AFAIK). The Midwest centers appear to be more conservative in this regard. And yes, I will always wonder whether having had that test would have gotten me a more effective first-line chemo.

            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 Feb 05, 2013 at 08:34:57 AM PST

            [ Parent ]

  •  my most unrealistic expectation: (14+ / 0-)

    That the lab was going to admit they made a mistake.

    I felt fine, aside from the biopsy and its effects on my pain levels. So the truth is that I expected to hear that it was all a mistake, up until the FedEx driver ran into the lobby of the clinic with my slides and the nurse ran them back to the team of fellows. That was when it became clear that they really did believe that this classic presentation of an invasive lesion in a healthy young person was a training opportunity, not an error.

    15 months later, my biggest challenge is a lucky one--managing pain. But for the minute-to-minute irritation from the surgical site, I can typically forget about the whole thing for days at a time. Which is a good problem to have if your goal is to get old (62% chance of turning 50! Go team!)

    Parent. Entrepreneur. Cancer patient. Moose tracker.

    by PhoenixRising on Mon Feb 04, 2013 at 06:49:49 PM PST

    •  Oh my. That is a really good one. How I wish (9+ / 0-)

      that had come true for you!

      (That was never one of my hopes, because my symptoms were so bad and so scary. I knew.)

      I'm sorry that you still have to deal with pain. Not the worst of possibilities, but not a great one either.

      I'm with you on the goal of getting old, or at least significantly older than I now am. Funny how 60 (I'm just 55) does not seem old at all from my current perspective!

      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 Feb 04, 2013 at 07:11:16 PM PST

      [ Parent ]

  •  So far, (10+ / 0-)

    I haven't experienced anything too unexpected.  I was diagnosed with ER+, PR+ breast cancer in September of 2012.  That was a big surprise since I thought, even through the biopsy, that the doctor was being super cautious.  When I got the call that it was cancer, I went the next day on a work trip and then returned to begin treatment.  Had a lumpectomy, then accelerated partial-breast radiation, followed by chemo.  Still recovering from the last round of chemo now.  

    The biggest challenge was going from a regular person to a "patient."  My sister (who has MM) warned me about this.  One day, you have certain concerns, and the next, it's all about getting treatment.  

    I will try to return to work next week.  We'll see what happens when I try to pick up a full schedule.

    All the best to murasaki and DarkHawk98!

    •  I am glad that your treatment has been relatively (8+ / 0-)

      uneventful and that you have the + versions because I understand they're more responsive to the standard repertoire of treatments (my apologies if I am mistaken in that regard).

      You have a lot to handle all the time; I am impressed by your perseverance and equanimity.

      Yeah, most things do take a back seat to arranging for treatment, for better or worse. My schedule is a little more open than it was, but I have elements of self-care to address every day, and appointments of one sort or another nearly every day of the week. It takes a while to get set aright.

      Best of luck with your return to work. I hope that your co-workers and bosses are understanding and supportive, and that your energy is there when you need it. Hugggs to you! Please do let us know how you're doing if you can manage 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 Feb 04, 2013 at 07:32:51 PM PST

      [ Parent ]

  •  My roller coaster.... (13+ / 0-)

    I went into surgery expecting the laparoscopic removal of a non-cancerous (normal C-125) ovarian cyst.  Had a small vacation planned less than two weeks later that I didn't bother to cancel, because it was a simple day surgery. I woke up eight hours later with an incision from stem to stern and many internal organs missing.  Initial diagnosis was borderline ovarian cancer, which is actually a "good" thing, as the only treatment is surgical removal and the cure rate is 90% or higher.  Yay, me! Gyn wanted an Gyn-ONC to verify, he needed his own pathologists to check it, they said nope!  Cancer.  The medical onc I was referred to for chemo wanted a third opinion, because he tended to believe the first path report, so we waited another three weeks. Nope!  Cancer again... two out of three.  Who knew pathology was so akin to voodoo?  So, I am mixed clear cell/ serous epithelial ovarian cancer 2C. Maybe.  Time between surgery and the start of chemo was 12 weeks.   In theory, the chemo is only an insurance policy, since the CT scan after surgery was clear, but clear cell and ovarian make it a crap shoot at best.
      I will get my fourth of sixth chemo next Monday.  Chemo has been a breeze.  Yeah, I know.  I'm some sort of a freak.  I follow all the rules and exercise every day and I think that makes a difference.  
      My biggest challenge is also my biggest disappointment in myself...  my appearance.  The hair loss, the wrinkles, the overly red cheeks, thinning eyebrows.  I hate it that vanity is apparently my biggest deadly sin.  I am so grateful that my symptoms are manageable.  I am beyond grateful that we have great insurance and I have a loving supportive family.  But it doesn't keep the dark thoughts away.  I want to grow old with my husband.  I want to see grandkids born and grow up.  I was healthy and strong and relatively stress free when this happened, which somehow only adds to the doubt... how can I beat this when my "healthy" self never knew it was there?  It was the size of a tangerine, twisting around and anchoring itself to my pelvis.  How did I not know that?  

    What kind of world is it where babies and kids get this disease?  Did you know little girls can get ovarian cancer and die from it?  I have spent a great deal of time today trying to think of anything I've learned about myself in the last sixth months or how I've changed or improved since this happened.  Nada.  Maybe it's too soon. Maybe I am too cynical.  

    Cancer sucks.  It cannot be said often enough.

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

    by althea in il on Mon Feb 04, 2013 at 07:21:41 PM PST

    •  {{{{{althea in il}}}}} (10+ / 0-)

      My goodness, your experience in surgery sounds like the days when women went in for breast biopsies not knowing if they would undergo a mastectomy instead. That sounds really tough.

      I don't actually know how iffy my pathology was, but it is not a rare occurrence to have significant disagreement among pathologists from what I have been reading on the cancer-specific online discussion boards. Especially when it comes down to the variety of cancer and to the grade (the degree of irregularity). Not much consolation, I realize.

      I would also be hard-pressed to refuse chemo with ovarian cancer. I am delighted for you that it has not been a difficult experience. On the other hand--I have a friend in her mid-40s who was first diagnosed with ovarian cancer at the age of 19, and as I recall all she had was surgery (multiple times, in fact, because the type she had was encapsulated and they thought it would be OK for her to keep the other ovary for a while). And I have another friend who is now just under 60 who was only diagnosed when one of her ovaries went into torsion, and the disease had already spread considerably. (She's also doing well, by the way, no evidence of disease post-surgery and post-chemo.)

      I know, what do two individual stories matter? Only to show that it is irreducibly different for every one of us, and that it is possible to survive ovarian cancer for a long, long time.

      Even though I had lots of symptoms of my cancer, I still relate to your feeling of physical betrayal (I think). I had no reason to think this was on my horizon; I also felt generally healthy and strong, though not stress-free, I will admit. My Ayurvedist has been encouraging me to make friends with my body more--which sounds silly to my ears, except that I do understand that I have not been a true friend to my body; I just have expected it to do what I wanted it to do, more like a servant than a peer.

      I don't know how old you are, but if this put you into premature menopause then indeed it is tougher yet. Even at 52 I was not ready to have it all end (yes, I know that makes me somewhat anomalous). And now I am taking an estrogen suppressant to dry up all the estrogen that my fat cells make--which apparently they were doing in abundance. I feel the sudden onset of aging very acutely, and it is hard to accept. (I think to be honest, now that you mention it, I would have to put that on my list of recent challenges.)

      As you say, too, it can be hard to keep the dark thoughts away. My very first reaction upon hearing the news was that I had to stay alive, my children (then 26 and 14) needed me. Absolutely, I want to see them all the way grown, and I want to revel in grandchildren. I want to savor the time with my husband once I am much better and the youngest is out of the house. I want to travel. I want to write more. I want to learn much more. I am far from ready to die.

      But it's still just one day we get at a time. One breath, one moment, one opportunity for connection.

      I'll share one of my comments in my group a couple of weeks back re the suckiness of cancer. I said that I didn't care what anyone had to say about it, but I did not ever consider having cancer to be a "gift." (Actually, I said something closer to, "Fuck the idea that cancer is a gift." I tend to be the only one in the group who swears, albeit rarely, which no one appears to mind.) This time, the reaction was laughter all the way around and vehement agreement from everyone present.

      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 Feb 04, 2013 at 07:59:02 PM PST

      [ Parent ]

  •  Have to call it a night. Thanks, everyone, (8+ / 0-)

    for coming to chat tonight.
    Next week, same place, same time. Meanwhile, please take good care.
    (If anyone wants to do an MNCC diary, you know how to reach me.)

    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 Feb 04, 2013 at 09:18:09 PM PST

  •  A day late and a dollar short.... (6+ / 0-)

    When I first got my Stage 4 diagnosis (metastatic breast cancer), I had a work-from-home job and a long-distance boyfriend, and I expected both to be a significant help in dealing with work/life/chemo.

    By the end of chemo, several months later, I had finally managed to get 6 weeks off work via short-term disability (first 4 weeks, then a grudging 2 more) because I couldn't even sit at my desk for 2 hours at a time...and had significant peripheral neuropathy...and my fingernails (and toenails) were falling off...the insurance company was HORRIBLE and dragged their feet for weeks and weeks, before giving me even that little bit, even though my diagnosis was incurable (terminal)!

    Oh, and by then my boyfriend had bailed out. Good riddance, in the greater scheme of things, but kind of hard at the time. But I hear that this is commonplace.

    I made it though, though, and am still whacking away at work/life/continuing treatments, 6 years later.

    And no, this wasn't a gift!!!! I would much prefer to have a hope of playing with grandchildren, of retiring from work someday instead of "work 'til I drop", of singing and sculpting and sewing... of having a head of hair again....

    "...somewhere to the left of 'Whoopee!'..."

    by Chantez les Bas on Tue Feb 05, 2013 at 06:29:56 AM PST

    •  No problem; you see we do come back around (2+ / 0-)
      Recommended by:
      hazey, corvaire

      to see what happened later. (Part of the problem, anyway, comes with having a narrow posting window, which is a little too late for some folks on the east coast yet too early for those on the west coast--and that's not even taking into consideration those who are not in the continental U.S.)

      So sorry that things did not turn out closer to what you had hoped. I have to agree, you are better off not to have that particular bf under the circumstances. But it is great that you are still here, still able to work and keep going.

      I hear you on all those wishes. I hope you can achieve them, too. {{{{{Chantez les Bas}}}}}

      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 Feb 05, 2013 at 08:39:48 AM PST

      [ Parent ]

  •  I've been here awhile (5+ / 0-)

    and, unlike most here, I never had the words "You have cancer." to deal with. I knew I had cancer, but by the time I got sliced up, sewn up and woke up, all I heard was "I'm pretty sure I got it all."
    Of course I wondered why I put up with all the pain for all those months beforehand. (Stubborn and stupid come to mind.)
    It has been just over nine years. I don't know the exact date of  surgery (middle of January for sure), but I know I went back to school after February vacation.
    I'm the only guy who gained weight during chemo.
    I'm thinking of you folks all the time and always hoping your outcomes match mine.
    I'm 59 and planning to be around for a long time!
    Have a great week, PK. Love to you.

    •  joemac, you are such a great role model! (3+ / 0-)
      Recommended by:
      joemac53, hazey, corvaire

      So glad that you are healthy now, singing and enjoying life to the fullest.
      Hey, you might be interested to know that I planned to mark my birthday last weekend by throwing a dance party. Trouble is--the people who came to the party didn't want to dance! Think I need more adventurous friends... ;)
      Same to you, joemac, on both counts.

      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 Feb 05, 2013 at 08:42:22 AM PST

      [ Parent ]

      •  What gives? (2+ / 0-)
        Recommended by:
        peregrine kate, corvaire

        Puffy Elvis is cranking up again to hit the school/community fundraisers circuit. It's hard to believe people want to hear us more than once, but we only play music to dance to. It helps that there are a lot of kids and grandkids around to liven up the place!

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