Cure Discussion - General Discussions

Letting Go of Certainty

By Debbie Woodbury - 9:02 AM, Mon April 20, 2015
General Discussions - Cure Discussion
15 replies
In these matters the only certainty is that nothing is certain.  Pliny the Elder

The first casualty of cancer is certainty.

Of course, I’m only speaking for myself. And, as someone who had gone through five years of miscarriages and infertility before cancer, I should have already known that life doesn’t always go the way you expect. 

Still, I walked into the breast center 15 years later without a doubt I knew the drill: remove everything above the waist, put on a robe, let the technician flatten a breast between panes of glass, hold my breath, repeat, get dressed, leave and, a few days later, open the letter confirming all was well.

I made it to the leaving part, but the letter never came. Instead, a nurse from my gynecologist’s office called to tell me that my mammogram was “suspicious.”

At that exact point, I was no longer certain of anything and fell into cancer’s black hole.

Over the next four and a half months of appointments, tests, biopsies, phone calls, internet searches, and crying jags, I was desperate to find firm footing. At first, I clung to every word uttered by my medical team, believing that everything they told me was guaranteed.

But time after time my expectations proved false and I was forced to adapt to the unexpected. The “suspicious” mammogram that was probably nothing, turned into cancer. The lumpectomy and radiation I would probably need turned into a mastectomy. The phone call I was promised with the results of my biopsy didn’t come. The diagnosis of stage 0 breast cancer felt certain, until debate raged as to whether it was truly cancer or not.

It got to the point that I told myself I had no right to any expectations at all.

It’s hard to let go of certainty. It was especially hard once treatment finished and I expected to be “over” cancer. As I worked on letting go of that expectation, I had to ask myself “what is normal after cancer, anyway?”  I had no easy answer, but realized the only certainty I could count on was to expect the unexpected and find the support I needed to work through the unknown.

Intellectually, I know anything can happen (or not, as was made painfully clear by the five years it took us to make a baby.) Despite the hard lessons I’ve learned from miscarriages, infertility and cancer, I still make plans and have expectations. I’m just not as surprised when things don’t go as planned.

I can’t say I’ve completely embraced uncertainty, but I have become a bit more mindful of accepting the present as it is. In truth, I’m just not shocked anymore when the unexpected happens because I’ve learned that the only certainty is that nothing is certain.

Has cancer made you more aware of uncertainty and the risk of having expectations? Let's talk about it in the Discussion Group, I answer every comment.
 
By Susan Fariss
9:02 AM, Mon April 20, 2015
And when you move to Stage IV cancer, as 30% of breast cancer survivors will, you earn a black belt in living with uncertainty. I live 6 months at a time and do my best to block out what may happen between scans. It sucks, but it is reality. It's really living in the "now" at an extreme. The hope is that the "now" is pleasant.
By Trillium
9:02 AM, Mon April 20, 2015
I'm 7 years past treatment for Stage 0 breast cancer (lumpectomy & radiation). Shortly after my treatment ended a friend asked when I'd know that I was "safe." My reply then was that you never know you're safe, whether you're past treatment or never diagnosed. I still have that attitude, but it is less prominent in my mind. Without frequent reminders that nothing is certain, the awareness has moved into the background of my daily life. But, that awareness is still gently present and helps me to remember that every day is a gift.
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
Your situation brings the concept of mindfulness to a whole new level, Susan. I hope your now is pleasant too and thank you for sharing your perspective.
9:02 AM, Mon April 20, 2015
I'm six years out from a Stage 0 diagnosis and completely relate to what your saying, Trillium. After my diagnosis and mastectomy, I was completely shaken by the uncertainty of life. I'm much less fragile now, but it's not a lesson you can unlearn. I'm glad your awareness isn't as acute as it was and that you've been able appreciate each day as the gift it is. Thank you for your comment and for pointing out the upside of uncertainty, which is the recognition that each day is precious.
By Emma
9:02 AM, Mon April 20, 2015
Thank you for telling us your interesting story. To answer your question, yes, having cancer definitely made me more aware of uncertainty, plus it reminded me that having expectations is always risky and generally sets on up for a fall. Now that I belong to the unofficial club made up of those who always listen for that other shoe dropping, never knowing if or when the sound will come, well, life is different, more meaningful and sometimes confusing. I've been very lucky with no recurrence since the initial cantaloupe-sized malignancy (GIST) was removed in July 2011. The experience encouraged me to drastically change my life for the better. I had twenty strokes that put me in the hospital back then, during which time an astute ED doctor felt the abdominal mass and suggested it be checked out. Without those strokes, I might still be walking around with that ticking time bomb on board. I also find Trillium's comment very interesting, about how her friend asked when she would know she was safe. Of course the one thing all of us who are readers of CURE for reasons that are surely related to cancer in us or in someone we know and love understand is that there is not, nor was there EVER, a guarantee of safety. We go through life if things are good as though nothing will ever happen that demands courage, facing fears squarely, enduring pain, suffering, etc., etc. But the truth is, chances for good as well as bad events lurk everywhere, all the time. You might have something wonderful happen, or you might be struck down by something terrible. So we're back to the living one day at a time theme that comes up so often, yet really does hit the mark. I'm trying to be that person though admittedly, I slip from time to time. My heart goes out to everyone dealing with the fear of or an actual recurrence, chemo, radiation, well-meaning folks who say the wrong things or just don't get it, not being able to eat or sleep, not to mention any and all suffering that comes from being part of this club. May the force be with you.
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
Thank you so much, Emma, for sharing. I agree that life is always uncertain, cancer just brings that truth home. I don't find it easy to live day by day either, but we keep trying to do the best we can. May the force be with you too!
By NC2
9:02 AM, Mon April 20, 2015
A few weeks ago I had a colonoscopy. Last week I received a letter in the mail saying the doctor had requested a review appointment on June 4th. I panicked because I remember him saying after the procedure that I would only be contacted if something was wrong. Over a month is a long time to wait while you're busy being panicked and paranoid. After reading your posts today I was reminded of a letter I wrote several years ago prior to my 1st 6 month checkup following lung cancer surgery. I'll copy and paste it here in the hope that it may help someone feel they are not alone in the feelings they may be experiencing. Here it is: Cancer is like a stalker. When you are feeling good and happy and enjoying your life, there it is hiding somewhere in the background and popping up to scare you and freak you out. It comes out of tv ads; on the news; in newspapers; on Facebook and the internet, in books and magazines, in the mail and on the radio, on billboards, in the movies, in the voices of people who when you asked what John Smith died of, pause and then say softly "cancer"---like if they say it too loud it might remind you that it could happen to you. It comes in disguised as things you wanted and thought would ease your worry, but now just make it worse. Now it's like a restraining order is about to be lifted and you're afraid that your "stalker" can get closer to you. Aaaarrrrrrrrrrrrrrrrrrrgh, really. What am I doing here? Wasn't I just that woman talking to you and feeling better. Well, on the bright side, it's a change from worrying about sudden cardiac death. However, if you do have SCD you never have to worry about it again. Okay, not funny, even for me. Following my PET scan, the report showed two areas that "lit" up. One was my lung cancer and the other was in the right sublingual lymph nodes. They thought the lymph nodes were probably reactive and were maybe an infection as, as the report said it would be an odd place for the cancer to have metastasized. Not impossible though, so they suggested a follow-up CT scan. When I asked my family doctor about the follow-up he said that CT scans also cause a cancer risk if done too close together, so he would have me wait six months before doing it. So I arrive at his office on exactly the first day of the month he indicated we could reschedule and remind him of the scan. Two days later the radiology department calls me on my cell phone while I'm driving and I don't answer and call back the number when I get to my destination. I feel a sudden sense of panic when I hear them answer "x-ray department". So the CT scan is scheduled for Monday, May 14th and now I spend my time trying to keep myself calm, but all the time waiting, and being paranoid that my stalker is somewhere out there waiting. Waiting for when it to be dark, waiting for me to be alone, waiting for any of the opportunities throughout each day for me to hear the word cancer. Remember when I said 'denial is my friend?" Well, apparently, denial is not my friend, but a cruel back-stabbing b_tch. Where is denial when I really need it? Who can be in denial about actually having cancer, but then be unable to deny that it could possibly recur? Apparently, me. I was reading the other day about the social and emotional impacts of cancer and saw that people who use denial as a defense mechanism are more at risk of developing depression following surviving cancer, as well as those who have had depression previously. So, that is when I first discovered that denial IS NOT my friend. A 10 year follow-up study mentioned in the same article mentioned that symptoms of depression were associated with a shorter survival time. Denial has let me down, and really I knew deep down that eventually the b_tch would not be a faithful friend and my loyalty to our friendship would come back to bite me. I knew it was just a matter of time before denial abandoned me and left me in a pool of my own tears. Really at this point a pool of my own tears might be a welcome relief. I am not the screaming kind, at least not out loud anyway. When I am afraid, I am paralyzed, and the only place you can hear me scream is inside my head. That's how I feel right now, like I'm always looking over my shoulder, afraid of when the stalker is going to jump out. All I can do is try to distract myself and try to live through the attacks of panic, listening to the screaming in my head. I am getting tired of trying to distract myself and running out of ideas that work. I am writing this now in the event that I am too panicked or depressed to ask for help. So, if you receive this, take it as a silent cry for help. God hears what is not spoken and understands what is not explained, for His love doesn't work in the lips or in the mind, but in the heart.
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
Please know we hear your silent cry for help, NC2. I know that the uncertainty of waiting for answers is excruciating and feel your pain. Please keep reachng out and looking for support. I credit my therapist with helping me deal with uncertainty and hope you find someone you can talk with too. No one should have to do cancer alone. I wish you all the best.
By Emma
9:02 AM, Mon April 20, 2015
NC2! If you have a car you can get in it, head out on the highway and scream at the top of your lungs with the windows closed, or not, as you see fit. I have done this and afterward, felt a strange yet wonderful peace in the silence. No need to hold it inside - isn't that what cancer is to begin with? You can do this, as evidenced by the fact that you wrote your story here. It's a start, and a very good one. Many of us are here to help, because, very simply, we understand. You are not alone. Be well and fingers crossed for a good outcome all around. Emma
By NC2
9:02 AM, Mon April 20, 2015
Thanks Debbie and Emma, I really appreciate you taking the time to send me a reply. I met with my therapist yesterday and am working on self-regulation when I start feeling panicked or frozen. It's great to know that others understands the struggle and are rooting for me. You've made me feel loved. Hugs and hope!
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
Emma and NC2: Thanks to you both for sharing so beautifully! I feel blessed too, knowing we're here to support and lift each other up. Hugs and hope all around!!
By annon123456
9:02 AM, Mon April 20, 2015
I found a qualitative difference between uncertainty after breast cancer (had it twice, once on each side) were I was stage 2b (first one) and stage 1 (second one, although with 5 tumors) and follicular non-hodgkin's lymphoma that has no cure. With BC #1 it took about 4 years not to think about BC every single day (BC#2 kind of got eclipsed by the fnhl diagnosis as I had both the same year). The no cure part of the mess puts a whole new spin on uncertainty that I would have never suspected the extent of until I ended up with an incurable cancer. The "how long do I have left" can haunt me on occasion. I am choosing to be homeless now because I need to pay $798/mo for health insurance and that takes just about all I earn (no medicaid expansion in this state and I got fired for cancer, don't currently make enough to get a subsidy for health insurance) After an agonizing debate I decided not to cash in what is in retirement to live . If I knew how many years I had left then I'd know when I could start using up retirement money and zero out what is there the day I die. But since I don't I'd rather be homeless now than older and when dying of cancer. I had a gofundme that helped, but donor fatigue set in (/78d3nc) and at that point I knew I needed to pack up what I owned that was left (selling stuff to live), put it in storage and move into a friend's basement. They move 1500 miles the end of June and if I can't find better paying and more employment soon I don't know what I am doing next, but I do know that without a crystal ball all of this is tons more stressful… Some days I can live like life will go on indefinitely and others not so much so. And then there is the occasional day where I just wish I'd die to stop the stress (not suicidal by the way, rather a reaction to all the stress of my current situation - more of a well if I am just going to die of this anyway then lets just get this over with type of thing). I found it took me about 18 months to wrap my mind around the no cure aspect of this and then be able to pick myself up to start living again. Of course I have a check up next Mon/Tue and have some symptoms again so likely I am in for another round of problems, which doesn't help my current state of mind. I think we all (stage 4 or not) know the anxiety these checkups can trigger...
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
I'm wishing you all the best, annon123456. I know you can't help but worry, but I hope your check up goes well and doesn't add to your problems and uncertainty.
By colon_stage4
9:02 AM, Mon April 20, 2015
I'm same as annon123456: reoccurrence,no cure, chemo for rest of my life, living on subsistence donation from a relative. Rely on govt. medical coverage for seniors. Mindfulness practise has been helpful, as well as online support sites like this. This economy makes it very difficult, don’t believe govt/media hype, we are in a depression as bad as the 1930’s..
By Debbie Woodbury
9:02 AM, Mon April 20, 2015
The economy has affected many of us to great detriment, colon_stage4. I'm glad you find some relief with mindfulness and sites such as this. Keep communicating, we want to support and hear from you. Take good care.
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