After the Crisis, Ambiguity

Since August I have been struggling to write. Writer’s block would be the easy explanation. But as reality has it, there is so much more going on.

For the first year of my diagnosis I scorched Earth with my posts. I dipped into a fiery pot of fear, anger, disgust, and bewilderment and scrawled my words on to a virtual page. Writing was my way of exploring this profound change to my life. I explored my fears of dying, the surreal reality of living with cancer, and reached out for support across the world. And for a self-described lazy writer, I was more prolific than any period in my life. And then it suddenly stopped.

It happened as the tide began to go out and the pink October tsunami could be seen building in the distance. Unlike last October, this time I allowed the tsunami to wash over me and, at the same time, I successfully ignored it. I boycotted October and wrote nary a word. I could have cared less about ta-tas, tits, boobs, saving second base (gross), pink ribbons and, yes, The Pink Diva herself, Nancy Brinker. And it was surprisingly liberating! It was the best feeling in the world! As much as I hated the pink, I found that I could live with it after all. Acceptance. Finally.

The crisis was over. The back pain that compromised my optimism and self-worth, my career goals, my finances, and everything else was ultimately resolved. My disease was stable and I could once again return to the work that I love so much. I had moved from the reactive phase of my disease to one of maintenance. And I have been out of sorts ever since.

Clearly the inspiration to scorch the Earth had begun to wane. One theory put forth is that with my energies now pouring into creative ideas and goals at the office, I am otherwise tapped out. The second theory posits that with acceptance reached I need to find inspiration from another source. The third theory is that with acceptance I’ve also tapped into denial. You know, everything is fine so there is no need to write and work it out anymore. And the fourth theory is that I’m just damned tired of it all.

In reality, all of these theories are in play. Even though I walk around every day with a palpable tumor in my right breast and an active–albeit stable–lesion in my sacrum, I do try very hard not to think about it all. But it is not easy. For one, I am always becoming acquainted to yet another limitation. It took a day and a half to recover from a Pearl Jam concert. I did a big load of laundry one Saturday and then ran a quick errand to the market for some fruits and veggies. It took me Sunday to recover. I took a 2.5 hour bus ride, and the next day was spent with pain killers and sleep. Any day of activity needs to be balanced by the following day without activity.

I work a full day, albeit a later one: 10-6 now. I can no longer wake, shower, and run into my day. Now I have to ease into it. My knees hurt so badly thanks to Letrozole. And, sure, I could try something new but it’s working so well on shutting down those estrogen receptors that I am fearful of trying something that could upset the wagon. So I grit my teeth and deal as best I can. My days of teaching have reached an end for if I do push through a day of 10-10, I will pay for it the following day when I am obligated to fulfill my primary professional obligations. *sigh*

CaptureI fight my oncologist all of the time. I put off blood draws, argue over scans. In point of fact, I’ve just rescheduled a renal ultrasound that was to take place in two hours for next week. It all takes so much time, money, and energy. (Denial. Can you see that one?) The only doc I will not argue with is my pain specialist. I still deal with pain at some level every single day and have no desire to revisit that hell again. (Ah, see how I can accept one thing and not another?)

I’m sick of taking an entire roster of medications. Christ, I’ve got a cool pill organizer, but the fact that I even have one deflates me. They all work; I am grateful for them. But who wants to swallow all of that chemistry every day? Never mind the costs. Probably a good $3K a year for co-pays on doctors visits and medication. For someone who would heretofore pay $150 annually for scripts, this is a mind numbing jump. My finances have taken a hard hit–something many of you can relate to, I know.

It is difficult when you have to weigh your life against economic realities. Do I take a gamble and pull back on my retirement (which I said I was going to do in an older post)? And will I live long enough to retire in the first place? I’ll be a lot older in twelve years and the pain that I face down now may not be so easy to scare off then. Everyone wonders and worries about retirement–but retirement with metastatic disease? That is about as close to an oxymoron as you can get.

When you’ve gone into the acceptance and maintenance phase of this experience it’s not like we get to carry a “survivor” flag or get excited about the close of surgery with new nips. I am not making light of those things, but when it comes to metastatic disease there is no flag, there is no close. It is always present and it doesn’t always tell you the way it’s going to go. It continues to badger my finances and throw a cloud over my retirement dreams.

Sure, everyone’s future is largely ambiguous, but add metastatic disease to that? The only thing we are guaranteed is financial hardship and a black cloud that hangs low over our “golden years.”

Oh, and cancer. Yeah, we’re guaranteed cancer.

The worst part about this is that I know I am not alone. Too many of us have to accept that we have a heightened sense of ambiguity in our lives that may not make us shut down, but does make it hard to think of the future the way we used to. How do we deal with a life of painful ambiguity? How do we face the unbelievable financial toll that it all exerts? I sure am looking for some answers, so if you have any start filling up the comments section!

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41 Responses to After the Crisis, Ambiguity

  1. Yay! You’re back. You’ve been missed! Thanks, as always, for keeping it real. I’ve taken the approach of just living in the moment. I’ll deal with tomorrow tomorrow. At 38 I cashed in my 401k to help pay for reality. And I decided to take a spiritual pilgrimage to Europe right now, in the middle of chemo treatments, because I refuse to wait for the “right” time. After my mom was diagnosed with cancer she spoke of wanting to go to Hawaii but never did. 18 months later she was dead. So I’m living life now. The constant pain & exhaustion makes it difficult but I refuse to just sit back, be miserable, and wait to die. I find it easy to forget about the cancer when i’m doing things I enjoy (eating, traveling, having intelligent & stimulating conversations) so I try to do more of that. And when I do have a moment or series of moments when I’m not in pain I try to recognize how good that feels and be grateful. And I love being a part of the breast cancer blogging community. Please keep writing (in any form) so I can keep reading. Your words are very much appreciated. Hugs.

    • Scorchy says:

      We always want to wait for the right time. But there is no right time.There is just now. I am so glad you are just taking off to go to Europe. I want to do the same. I really do need to get my financial house in order and then I want to spend two weeks in England. I also want to visit some family in Egypt. We just have to do it. Thank you for reminding me of this.xoxoxo

  2. bethgainer says:

    Glad to see this post, and I’m soooo glad the meds seem to be working and you are coping with the pain as best as you can. And I really relate to the writer’s block thing. Sometimes it’s a complete paralysis of the pen….er….keyboard. Hugs to you.

  3. Susan says:

    I am so glad to read that the pain is managed. You have so much to deal with because of the mets. The financial stress, questions about your future and so much – I don’t have answers but I hear your questions. I hope the letrozole that is doing a number on your knees, joints etc. continues to keep things at bay. I think with work and everything going on you write when you feel you want to. This is all about you and you are amazing. I love the snowflakes flying away as I type. I send you tons of cyberhugs with love and light. – Susan

  4. Catherine says:

    Answers… I’m too new at this for answers. Realities keep buzzing into my face like little persistent flies. I love the idea of living in the moment, and would be grateful for the button that allowed me to simply switch off the worries. Sometimes that button is called ‘denial’ but other times I guess it’s call ‘avoiding the hospital’ (maybe the same thing?). When you do find the answer, please do me a favour and write a post on it. In the meanwhile, I think a new season of Downton Abbey is on the horizon. 🙂 Thank GOODNES for that.

    • Scorchy says:

      Maybe the answer IS in Downton Abbey. A secret phrase that give us the answers for all of life’s mysteries. No doubt it will be offered by the Dowager Countess herself.

  5. Audrey says:

    I’m so glad Marie shared your post. I don’t have metastatic disease but I have had recurrent cancer and it shifts all your assumptions and plans. Although I made the shift to freelance and love it. This year has been hard. I too wonder about how will I live in retirement then laugh at myself. I have creid when i have picked up prescritions meds, thinking is this me? I’ve finally decided to focus on being kind to myself and something that a good friend who runs the WEL course says, which is to accept that change shouldn’t be forced , it’s a creative process. He also suggests a holiday everyday, something to just enjoy and savour. I love that idea. Marie’s advice of staying mindfully with the questions is perfect. Go well in your time of change. Audrey xxx

    • Scorchy says:

      Yesterday I welcomed a friend for tea. I preapred it like I always do for guests: teapot, loose tea, proper tea cups and spoons. Cream in the little creamer and sugar in the little sugar bowl. I love to drink tea this way. And then I thought. “If I love that, why don’t I do that for ME?” So this morning I had proper tea. For me.

      You’re right. We need to be kind to ourselves. Maybe this is the beginning to being kind to me.

      Thank you for stopping by Audrey. And thank you also for taking the time to comment. xoxo

  6. Been thinking about this post a lot. I don’t have any great answers to your questions – heck, i don’t have any answers to my own unresolved issues.. but at times like this, I fall back on the words of Rilke and try to remember to live the questions. “Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”

    • Scorchy says:

      Wow, Marie. Live the questions. It is something to think about; I think I’m looking at a steep learning curve! Food for thought. Good food.

      So glad to connect again! xoxoxo

  7. eak13 says:

    I have been stuck for something to say for a while. It’s not that I don’t have a lot to say . I do I just figured why bother. I’m almost at the 5 year mark. I ‘m tired of cancer..I am so tired of my body hurting..I hate that I had to start another blog and maybe a little frustrated because I don’t have the following as I had.. Maybe that shouldn’t matter? It’s almost Christmas and I don’t even care But I am very happy to read your blog again. Maybe there’s hope for me too?
    Love Alli xx
    ( formerly known as “Life in Transition”)

    • Scorchy says:

      There is a pull between the “I don’t wna to think about cancer” and the “I need to work out what I am feeling” side. On one hand I figure since I’m going to think about it anyway, I may as well write about it. But I’m not at the five year mark, either.

  8. my dear Scorchy,

    so glad to see this comprehensively Bucket of Fuckedness post – a true masterpiece of the ambiguities of living (?) with all the what ifs and all the other BOF issues. and the thing is, that most of the people we interact with every day don’t have a clue of the reels that run through our heads and make us crazy and feel so isolated.

    but YOU know. maybe the loss of your ability to teach is trying to tell you something? putting all your experiences into a book could wind up being the most fulfilling teaching accomplishment you could ever imagine. whatever you decide to do, just know that I am here, cheering you on and that I love you.

    much love and and lots of bright light to help you find your way,

    karen

    • Scorchy says:

      I think I returned to blogging to get a comment from Karen the Commenter. How I have missed you. xoxo

      Not teaching is a bust. It was good money, to be sure. But more than that I so enjoyed working with the young men and women coming into my profession. I encouraged them to reach high and do everything with fervor and joy. I will really miss that. It is much like a death.

  9. The Accidental Amazon says:

    Well, my friend, this is one helluva post & was worth waiting for. Can relate in so many ways, even from the NED-so-far camp, to so much of this — from the lack of blogging to the exertion/miserable-recovery, trade-off rollercoaster, to worrying about when & whether I can afford to retire. I have no words of wisdom to add, but I do have another issue for this list: which is that I am soooo much less able to tolerate petty bovine excrement after all this, that when a massive dump gets dropped in my path (which has been happening far too frequently of late), it can throw me into a tailspin, from which it is now much more difficult to recover. *sigh*

    I’m just glad that you’re still here. And that I’m still here to read your words and appreciate them. xoxo, Kathi

  10. This was awesome. Ambiguity sucks as much as cancer. Together, it’s a crock of excrement. One day i feel full of ener gy, the next, like an old sock. There’s collaterral damage regardless of where you are in this mess. When i was diagnosed and, treated i felt worse, but could write. Now i feel better but my brain is sludge. It’s all the things you described so well. Thank you for writing this!

  11. juneaubugg says:

    Scorchy; so nice to “hear” you. You have so much to say, and I so enjoy listening. I can identify with your feelings of dealing with chronic illness. Although mine is not life threatening, I’ve had Chrons disease for years and have a large selection of medications, which has only grown from the breast cancer which has contributed gabapentin (for hot flashes) and tamoxifen to the fray. I have used over $3800 of FSA funds a year BEFORE the cancer even came and now I get to add all those dr visits and tests to the mix.

    Anyway, I just wanted to let you know that I identified with what you shared. I don’t understand the whole, “what if I don’t die on time” thing (gratefully) but I do empathize and can see how that must be such a burden upon you. Trying to live life to the fullest with all these worries and restrictions certainly sucks… but like my jewish mother always says… “what’s the alternative”. Please keep writing Scorchy…. I learn so much about myself, through you. Your honestly gives me much needed perspective. ❤

  12. Elizabeth J. says:

    I so understand the ambiguity. I am in remission, yet still have a great deal of fatigue from original treatments. And femara (and maybe faslodex – how can I tell, side effect lists are so close?) makes me feel really lousy. I, too, have this love/hate relationship with my meds.
    I am still fighting for disability (my school district did not want to do their part or even get me the forms), and then wondering will I live long enough make it worth it. I could take about 60 or 70 % retirement now, but three years disability would put me at full retirement. My husband fears, because of my disease, that he will never retire.
    I really do think you should gather those blogs into a book. These kinds of things are so helpful to others going through it. There are so many ways that just knowing others have the same fears and struggles and feelings helps.
    You are right, when you have metastatic BC, you have no flag of victory to wave. Remission is not a cure, not winning the war, it is an indefinite truce. Same with tumor stability, a truce, not a victory. There is a feeling of relief, of hope it will last a very long time, but happiness is always muted some by the realization, it is ultimately temporary.

    • Scorchy says:

      We’re kinda of like North Korea and South Korea–this shaky but never-fucking-ending truce. AHHH! Yet we move on in spite of it all. We gotta keep moving on. xoxo

  13. Great post, much to think about, and much that resonates. Thank you x

  14. Victoria says:

    Boy, that was one hell of a post. Bisous (sloppy French kisses) from Versailles.

  15. “And will I live long enough to retire in the first place? I’ll be a lot older in twelve years…”, gosh, unless a girls retirement age has seriously moved out to the 70’s in USA, I must desist communicating with such a Spring Chicken 😉

    Welcome back Scorchio: http://www.youtube.com/watch?v=MuSPdsPWit0

  16. Hi Scorchy,
    I’m glad to see a post too.. Cancer takes a toll in so many ways… And yeah, answers – wish I had some of those. The questions sure keep coming though don’t they? Love the book idea. xoxo Nancy

  17. keithw says:

    Glad to see your new post! This lousy disease – and the lousier stage 4 of it – takes proactive options and pretty much tosses them right out the window, so you’re mostly left with reacting as your only option. For a self-directing, purposeful and assertive person this must be nearly maddening. About the only thing you can do is try to make your plans mutable and position yourself to be as flexible as possible; fine advice, but getting that dog to hunt is another thing entirely isn’t it?

  18. helensamia says:

    Glad to see you back posting…

  19. Elizabeth says:

    I think you are one hell of a lady but also bloody fed up of the whole business
    Time to get all your Posts, thoughts and musings together and write a book You have the wit and sarcasm that women with problem boobs all over the world can empathise with
    You also give encouragement without being sappy Our combined hatred of the Brinker idiot ensures I and all my friends will buy copies So go for it Scorchy
    Love and Big Hugs
    Elizabeth

  20. Knot Telling says:

    Welcome back, my friend. 🙂
    I get it; I haven’t written for a couple of months, either. I’m tired of struggling, I fight my onc, I resent my meds at the same time I’m grateful for them. I have a love/hate relationship with my pill organizer. I am wondering if I should break my retirement savings plan in order to get more full time help now – but what if I don’t die “on time”? And so on.
    You said, Scorch, and you said it very well indeed.

    • Scorchy says:

      YES! “What if I don’t die on time?” That is is EXACTLY.

      • Oh, I really understand how you feel! Do I splurge on a trip of a lifetime or will I be too exhausted to take it? I know my husband and daughter will be fine if I die on time, but if I outlive that term life policy, will we be ok? Plus my husband is disabled with depression and anxiety. How will he handle my passing? I have to get rid of my “stuff” (and craft stash) or he will be overwhelmed. I would start a purge, but my narcotics make me sleepy. And can I still volunteer at school when I get sepsis like regular people catch a cold? By the way, I struggled with the pill cases today. I must blog about that chore.

        You see, Scorchy, and KT, there is still so much to blog about. If I don’t see you post, I will be happy to assume it is because your are feeling well and feisty. Unfortunately, we usually stop blogging for the other reason. ~Kate

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