Five Years Later: Zigzagging Toward Acceptance

Biopsy
“Your biopsy is positive.”

None of us ever forgets when we first heard some version of that phrase. I heard it five years ago today. And I thought it merited my emerging briefly from my blog hiatus to write a post.

Two weeks ago, I saw my primary care doc for my annual physical. Last week, I had a bunch of lab tests, all good. Next week, I’ll be confirming the date of my next mammogram. Then I’ll be going to get it. And biting my nails till I get the results. A few weeks after that, I’ll be seeing my one remaining cancer doc, my surgeon. And hoping we’ll be discussing negative results again and not discussing the need for further tests. NED, I’m waiting on you.

What hasn’t changed.

I still have to be vigilant. I know too much to think that five years of NED means I’m off the hook. I’m still tired. I still find it hard to concentrate. I still have days when I just have to give up and give in and do nothing. I still can’t work full time. I still have pain and problems every day with my right side, my right shoulder, arm, elbow, and wrist. I still have to be careful not to lean over and reach too quickly, so I don’t set off a massive muscle spasm from my right collarbone, through my chest, and down to my waist. The main cause is radiation, which left in its wake a lot of permanent soft tissue damage five years ago this October.

My house still looks more like an archeological dig than a home. The livingroom and the kitchen and the bathroom are mostly habitable. There are piles of things in other rooms, some in bags, some freeform. My bed looks like a bed, and I manage to keep clean sheets on it. The cats like it. The laundry is never caught up, but the cats like that, too. The main thing is that I still have a home. And the plumbing works. And the roof doesn’t leak.

I have managed to mow the front yard more or less regularly this year. The back yard hasn’t been mowed all summer. There’s a fence around it, a high fence, which is good. Keeps out the larger species of wildlife, and hides my benign neglect from the neighbors. And now there are some wildflowers growing in it, things like black-eyed Susans and wild asters and Queen Anne’s lace, poking in around the false indigo and spirea and hostas and columbines I planted before I had cancer. It’s become something of a small meadow. Rather pleasant. The bees and butterflies like it. At some point, I’ll tidy it up. Just not today. Maybe not this summer.

Thanks to e-banking, most of my bills get paid on time. And I still get a paycheck. And I still have health insurance. And I still have my job, the same job I had when I was diagnosed. I’ve had to adjust and decrease my hours around cancer’s viscissitudes over the years, but nobody seems to mind very much except me.

What also hasn’t changed is that I’ve lost friends to breast and other cancers. And old friends continue to be newly diagnosed with mets. And most of my cyber friends are friends who’ve been diagnosed with cancer. And I hate doctors appointments. And I guarantee that I will still have the heebee geebies when I go for my next mammogram.

What has changed.

My social life is a lot more circumscribed. I’m not as spontaneous as I used to be. But I cherish the friends who’ve stayed the course even more.

Making Art with a capital A has taken a decided nose dive in the last few years. I still make art with a small ‘a’ now and then. Art with a capital A requires more energy and money and resources than I have these days. I’m not worried though. I’ve been at it long enough to know that the river hasn’t dried up. It’s still there, whenever I’m ready to dive in again.

My life has slowed down. Dramatically. And I’ve had to let go of a lot. Of necessity. I haven’t liked it much. Some of the letting go has been painful — like letting go of friendships and expectations. But I don’t feel as angry and resentful about it all. My attitude has changed this year, for the better, I think. I seem finally to have come to some genuine acceptance of where I’m at and how I got here. Doesn’t mean I won’t try to change and improve things. But I’ve learned to make small goals, teeny goals, short-term goals, and not to get as discouraged as I used to if I don’t meet them. I’ve learned to stop comparing Now with Then as much as I used to do. Huge, that one. Now is now. That’s all I can deal with. Then is in the past. Tomorrow could change on a dime. I know that very well. And if it does, tomorrow is when I’ll deal with it.

What I’ve learned.

Aside from feeling like I now have an advanced degree in oncology, I’ve learned that I can’t fix everything. In fact, I can’t fix most things. I’ve also learned that it’s much easier to do one thing at a time. And that multi-tasking really is a myth, because I can’t really pay attention to more than one thing at a time. Because paying attention at all is often a challenge. And that finishing small things feels just as good as finishing big things. And that the way to finish big things is to subdivide them into small things.

I’ve learned to be much more forgiving. I’ve learned that I have to forgive myself and others and the ups and downs of life, sometimes on an almost constant basis. I’ve learned to expect to forgive, that it’s healthy to forgive, that it eliminates a lot of needless disappointment to develop the habit of forgiving. It doesn’t mean becoming a doormat or a passive, unfeeling lump. It doesn’t mean putting on blinders to what is wrong or cruel in this world. But it does mean learning to step back from what may feel unforgivable. And it means I’ve learned to pick my battles. I’ll fight the ones I need to fight, but I don’t have to fight them all. I get to help people for a living. Often that means I get to advocate for them. And when I do, sometimes I get things to change for the better. It’s a lot easier to do that for one person at time, and often, it’s a lot more meaningful, too.

It helps that I never said ‘why me?’ when I was diagnosed. When you work as a healthcare clinician, you get over that very quickly. Catastrophe happens, unbidden, undeserved, all the time. I hate that I was diagnosed with cancer, but I never took it personally. I’ve learned to value my passion and skepticism, but to spend them more wisely.

After spending so many months and years feeling not okay, indeed feeling the very opposite of okay, it’s great now to feel just okay. In fact, it’s brilliant. I don’t have to feel spectacular to laugh and love and play and help someone. And when I do, I often end up feeling a lot better than okay.

Here’s to the next five years.

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This entry was written by Kathi, posted on Sunday, July 28, 2013 at 06:07 pm, filed under Attitude, Fatigue, Survivorship . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

35 Responses to “Five Years Later: Zigzagging Toward Acceptance”

  1. Loved this and congrats girl. Life is different on the other side, and being gentler with ourselves and others is really it. More permission giving, more relaxed about what is and is not important. My yard looks like yours, and I am happy to by counted as a cyber friend.

    Congrats again!

    Lauren

  2. Kathi! So good to see a blog post from you. Thank you for writing this. It’s important for everyone, no matter where they are on the Big C path, to know that life never really returns to “normal.” Energy doesn’t come back. (But fear always does.) And that feeling okay is really okay.

    Congrats on 5x living with NED. (AnneMarie’s 7x living with NED was yesterday.)

    xoxo

  3. so glad to see this post, Kathi. I’m just a year and a half in but so much of it has been so much easier because of YOU.
    thanks hippie chick – keep on keepin’ on.
    xo
    y

  4. Jeez….

    Wow….

    I can’t believe our dates are one day apart….

    love you miss you come to ny….

    xoxoxo

  5. Congratulations. Love the graph – it definitely defines life post cancer.

  6. Cheer to the next five years, and for everything feeling OKAY. I’m so happy for you, Kathi! Thank you for sharing this with us 🙂

  7. Kathi, I also love the graph. Mine takes a nose dive just before the 5 year mark, because I developed endometrial cancer from the tamoxifen, while my oncologist ignored all the warning signs, and it wasn’t until I had no choice, except to have a complete hysterectomy, that I learned I was high risk.

    Just google tamoxfen and endometrial cancer and the ACOG bulletin comes up that spells it out: I was at 18 fold higher risk due to developing recurrent polyps on tamoxifen.
    http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Gynecologic%20Practice/Tamoxifen%20and%20Uterine%20Cancer.aspx

    So, after developing an iatrogenic second primary, I hope my graph starts to trend upward again as I shed my medical oncologist, complete my adjuvant therapy and slowly find my way to yet another “new normal”

    Kathi, your blogs are so appreciated.

    sorry for the rant

  8. Judy, I so owe you a massive hug (and a phone call!). Thinking of you every day.

  9. Raising a glass to you here in Darwin, Kathi – here’s to the next five years, indeed. I was very struck by the hard-won wisdom of these reflections – particularly taken with: “Tomorrow could change on a dime. I know that very well. And if it does, tomorrow is when I’ll deal with it.” Will be reflecting on this and trying to take it to heart – just one more thing I’ll be taking from your fantastic blog. Three cheers for feeling okay.

  10. As always sweet lady, you wrote so rightful what is so wrongful, but with a heart of gold and mind full of hope~ Stay the road, regardless of which path you take and live it to YOUR fullest. Remember that you words and smile brighten many a life here in your blog, in your patients lives and I’m sure in your friends/families lives~

    Another great blog dear~ Hope you get back into one day when your heart is ready~

  11. Hi Kathi,

    Gosh I’m so happy to see a new post! I’ve missed you.

    I love the phrase you used – “Aside from feeling like I now have an advanced degree in oncology…” Well, I don’t love that you feel that way, but you know what I mean. And yes, sometimes we know too much don’t we?

    My house and yard (not to mention my body) look substantially different these days too. And feeling okay is now pretty darn nice. I hear you on that one too! I hear you on all of it.

    Anyway, congrats on the five year milestone. Cheers to you my friend.

  12. It’s “brilliant” feeling great.

    That it is, my friend. Congratulations!
    xxoo

  13. It’s so sweet to read this beautiful post. Congratulations on your five years! I am so happy for you. Your joy is spilling over and it’s a great thing to appreciate where you are. xoxoxo

  14. What a wonderful and honest post. You’ve conveyed well that being finished with treatment doesn’t mean we’ve bounced back to our pre-cancer selves, despite the passage of time. Congratulations on your 5-year cancerversary. Here’s to many more years of NED!

  15. Kathi,

    I’ve missed you so much and am happy to see this post. I’m not happy about all you’ve been through. Congrats on five years, and here’s to NED for…well…forever! I hope your mammogram results are great; yes, that nail biting feeling never goes away. If you need to talk or anything, feel free to call or even text.

    I try really hard to live in the present. Sometimes I do it well. Sometimes, not so much.

    Glad to hear from you!

    xoxo
    Beth

  16. Thank you all, my friends. It’snice to be missed. Yet it really has made a big difference to step away from the blog for a while & limit my cancer consciousness, as it were, so I can just relax more & allow myself to have fun. It’s the only way to restore any balance after this sleigh ride. And the restoration is an ongoing project! Love to you all.

  17. Congratulations, Kathi. I’m so happy for you and wish you a lifetime of NED. I’m sorry I haven’t posted in so long; it’s been a rough road for me, but I miss my online friends soooo much. Much love, Jan

  18. Jan, been thinking of you. Glad you commented. Have missed you, too. xoxo

  19. oh, kathi – I’ve missed you. but I am thrilled to hear of all the positive stances you have taken to allow yourself to be more happy and relaxed – doing what you CAN do, and saying FUCK IT to things you can’t change. as I am navigating new widowhood and a new cancer (uterine), I find encouragement and peace, inspired by many of the same thoughts you have expressed. they aren’t just a lot of rah-rah, smile, and be happy, don’t worry. they are aspects of life that need to be examined along with our emotional and physical responses so that we can figure out what gets purged to lower the threshold of disappointment and despair, and what we have within ourselves to use to the fullest measure to make life meaningful.

    I, too, still have NED, and I hope your NED stays for many, many more 5 year intervals. I say to my NED – pssst, NED, you dear fellow, don’t let anything in my nether regions scare you away, maybe all the beautiful and mindfully made promises to yourself will keep your NED saying, ahhhh, I think I am in a very good place -wouldn’t think for a moment about picking up and leaving.

    I think I will read and re-read this post to help me in dark hours when I most miss hugh and when I FEEL much about what you have written about but can’t get my mind reeled in to be more fixated on what resonates with me and helps me. thanks so much kathi for a superb post that goes the distance to provide clarity and truth. I love you, my friend, and will continue to envision your life proceeding in directions that please and comfort you.

    XOXOXOXO,

    Karen, TC

  20. Karen, please do keep in touch. I am hoping for the best for you going forward. Do you have a treatment plan mapped out yet? I am truly touched if any of my words can help you through this miserable time. Hugs.

  21. Kathi, the day after you posted this, they came out with the recommendation to take the “carcinoma” out of DCIS, and I kept thinking of you.

    I am in touch with a couple of wonderful breast surgeons–of course no one who ever treated me–and one wrote me:

    ” Seems like we torture women more with the long term treatment side effects of the disease. We cure the disease but spend a lifetime paying for it…”

    The other breast surgeon is a survivor and says she feels as though she’s being punished for having cancer, as she navigates her many chronic issues created by treatment.

    And Gayle Sulik just wrote a great article in JAMA ethics (who knew they had an ethics edition??) about survivorship–with this initial quote:

    “What patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.”
    –Siddhartha Mukherjee, The Emperor of All Maladies [1]

    I know I’m very tired of the the “hall of mirrors” and the endometrial cancer came just as I saw the exit.

    I am beyond glad that you’re blogging again and I do know how much we all need balance so we’re not in the hall of mirrors.

  22. Judy, when I read all the kerfuffle about renaming Stage Zeroes, I reposted something I wrote in November 2011 when the subject first raised its thorny head: DCIS: What’s In A Name? I appreciate the idea of avoiding overtreatment, yet in the case of some ‘pre-cancers,’ like DCIS, we just don’t know enough yet, except that we know that some of them will turn invasive. And if you are found to have a pre-cancer, then cancer still has to be discussed, and I fear that without standard protocols, and much better tools for screening, monitoring & path assessment, patients may be left without proper information & treatment. *sigh*

    In the three weeks between my initial stereotactic biopsy, path & breast MRI, and the mamm done an hour before my surgery, my DCIS had evidently spread more widely, necessitating the placement of two wires to bracket the spread, instead of the one planned to be placed in the middle at the clip placed during the biopsy. Three weeks. One could wonder that my initial imaging might have missed something that was there all along, but path classified the lesions as high grade, and I’m just glad it was removed. What would have been better, of course, is if the radiologist who read that pre-surgical mamm stopped & brought my surgeon in to speak with me about whether we should reconsider the whole treatment plan. That didn’t happen, but it was all removed, with clear margins, and that’s still fine with me.

  23. It was an aggressive cancer “in situ” and we have no way to tell which will be indolent and which will be aggressive like yours.

    Right now, I feel the pendulum is swinging toward avoiding overtreatment, but without accurate tools to tell which cancer will be aggressive or which will peacefully co-exist, it’s still better to err on the side of caution.

    Kathi: the whole team concept in oncology–I feel the fragmentation is so severe that the only time the team ever talked about me was at initial tumor board. Then they operated in parallel planes. Maybe filing each others’ consult notes, but never consulting again….

  24. Oh, so true, Judy. Welcome to our work world, eh? Drives me nuts, in so many ways, both personal and professional.

  25. Brilliant post Kathi – this is all about learning and then adjusting to change, and moving onwards often in fits and starts. It is so good to see your writing again 🙂

    I so hear you about the “afters” as well as the “sides” of cancer treatment. That is the first time I have heard of those weird cramps, I just thought it was stiffness with me, but I have a very similar thing happen when I lean to one side, or try and turn round. Weird cramp in my neck sometimes! I never realised it could be linked to radiation…………. Aah well, there’s another one!!

    Wishing a long association with NED, for ever in fact.

    Love and hugs
    P

  26. Thank you, Philippa. I certainly wish the same for you. And yes, those one-sided torso spasms are a real treat. Take my breath away. It was the one-sided-ness of them that gave them away initially, plus the ‘epicenter’ is right over my chest. OY!!! xoxo, K

  27. Congratulations on reaching your five year milestone! You’ve certainly gone a long way and I’m happy of the positive changes and lessons you learned along the way. I also believe that the first step to being happy is acceptance and forgiveness. May you go and continue to take charge of your life and do all the things you love to do. Wishing you many more wonderful moments! Cheers to the next 50 years!

  28. I am 7 years out this month…I cry sometimes for the things Ive lost, but more often than not, I cry because I feel blessed to be alive when so many others aren’t. Cancer was the worst and the best thing to have ever happened to me. It opened my eyes at a fairly young age to what is priority, what is truly worth worrying about, and why life is so precious. You said what Ive been feeling perfectly, so thank you!

  29. Stephanie, thanks for your kind comment. There’s a lot we cannot change about this experience, but one thing we can change is our perspective. Makes all the difference! xoxo

  30. So glad I happened upon this! I’m fourteen year out. Last year, after some minor symptoms, I had a complete hysterectomy, and was surprised at what a sigh of relief I breathed.
    I hit bottom once or twice, but am now (slowly) cleaning up the piles around my house and see sunshine ahead. And, I’m stronger in many ways.

  31. Fourteen years, Lorraine! That’s great! And I have to say it wouldn’t surprise me if it takes me another 5 years to clean up the piles around my house. xoxo

  32. What you wrote, Kathi, is exactly … I mean EXACTLY … where I’m at right now. To explain to my family and friends how I feel at this point, all I need to do is say, “what she said” and give them the link. Even then, I think the only people who really understand are those who have walked in our shoes. Sadly, there are WAY too many of us. The year 2009 was the year of my cancer diagnosis and surgery/chemo/radiation treatments. I thought I would then “get my life back”. HA! Oh, well. I’m where you’re at. I’m okay. And that’s okay. I wish you continued “okayness” at the very least but even more, I wish you genuine joy and a feeling of true wellness.

  33. Thanks, Heather! You, too. The good news is that I feel a little bit more okay more often. And I’ll take it. xo

  34. I’m toward the end–or perhaps somewhere in the middle of–breast cancer treatment, and I so appreciate reading about what others who have walked/are walking this path take from the experience. There is so much to learn. So much to grapple with, of course; so much to survive. But out of that, so much to learn.

  35. Good luck, Jenny. It’s almost two years later, and I’m still zigzagging, but I’ve gotten better at it! xoxo, Kathi

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