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A last curtain call - hopefully

evertheoptimist
Posts: 140
Joined: Jan 2011

A Last Curtain Call - Hopefully

Now that my chemo treatment is over and I have been declared to be in remission, I have decided to explore what I could do to maximize my odds for a good long term prognosis. I have a cancer with one of the highest mortality rates diagnosed at the most advanced stage. I am optimistic for my long term survival, but realistic enough to understand “cure” is not the word they usually use for my condition, and recurrence is likely within a few years. My realistic goal is to have remissions that last long and manage recurrences in between with effective treatments.

I am exploring cancer vaccine trials and maintenance therapies with latest drugs on the horizon. As usual, I have been doing very intense research on these subjects. All of these options are experimental in nature. I believe when you have such a poor prognosis going in, the risk assessment analysis favors an experimental route with a large potential payoff. The kind of options and choices that will be too risky for someone with 95% survival odds for 5 years are worth the risk when you have 5% odds on the book – like me!
It so happened that a week ago, they held the largest annual cancer conference in Chicago. As can be expected of any large professional conferences, numerous research papers were submitted, many of which were results of the latest clinical trial outcomes. I have read all the abstracts of the papers related to my condition. And, I found some interesting common denominators. When researchers try to demonstrate the effectiveness of a new drug or a new therapy regimen, they compare the survival statistics of the new treatment against that of the “control group patients” who have gotten the standard, default treatment. When I started to read the papers, what caught my attention was not just how well or poorly some of the experimental treatments worked, but also the baseline survival stats – the stats of the “control group”, who got essentially very similar treatment as I did with a comparable diagnosis as mine. Study after study, the median remission length for women with a comparable diagnosis was within a range of 10-12 months.

This was a very sobering insight. Official survival statistics are available on the web. However, no official data is available on remission statistics. This is the first time I had empirical data that gives me a realistic view on remissions for women diagnosed at my stage. When I processed the implication of these numbers, I sat for a while with cold realization that, achieving remission after the initial diagnosis is only a tiny fraction of all there is to it when it comes to long term survival. Recurrence within 12 months of initial remission bodes poorly for the longer term prognosis as it limits the treatment options that are effective for the patient. Subsequent remissions are likely to be even shorter. One can soon embark on a full career of near constant cancer treatment with a worsening outcome at each successive try until all the tricks in the bag are exhausted – and we all know what this means…..

Three weeks ago, I felt like I won the lottery. Getting into remission so easily after a standard treatment was never a given for me considering where I started. Now I realize that I have to beat even greater odds if I were to make good on my promise to my husband and kids that I will emerge a long term survivor. I haven’t even finished the victory lap, and the race is starting all over again.

On a short term basis, life might be easier if I were to believe that what will happen will happen, and it’s out of my hands. Fatalism can be very seductive. It absolves you of any responsibility and guilt. You get to do what you please and have a veneer of normalcy and freedom of choice. But, I am constitutionally incapable of pulling off such a feat. I have always been under the delusion that I have a choice to decide how I respond to a given situation and power to control what happens to me. I don’t know how much of my easy remission was due to pure luck and how much of it was due to my rigorous regimen of doing everything right, which, much to my husband’s dismay, included eating a bulb of garlic a day! in addition to exercise, visual imagery, dietary supplements and radically healthy eating habit. If I were to believe that my discipline to stick to this regimen helped me achieve remission, it goes without saying that I must keep it up to avoid recurrence. It’s one thing to do this for a finite period of time to emerge a winner for remission. Even for an incorrigible, self flagellating, Type A personality masochist like me, the prescription of life long commitment to such a regimen is a daunting thought – and can be downright depressing….

Unlike the regimen while in treatment, the “to do list” while in remission is actually mile longer. One thing I learned already is regardless of how good a medical team who takes care of you is, the patient must be her most ardent advocate and stay on top of thing all the time. While I must maintain all the preventive regimen of nutrition, exercise, and life style choices, I must also keep up with the latest research and treatment development. Furthermore, I have a cancer that went from a clean checkup to Stage 4 in 7 months. When and if recurrence happens, I will have to spring in action with no time for long and deliberate lamination on all the treatment options I must consider. The action plan must be constantly updated and ready for immediate deployment in case the situation calls for it. All these, combined with the need to carefully and continuously monitor myself for signs of recurrence, make it clear that there is no vacation for me from these new routines. This is a new normal that I must adjust to. That is, if I truly want to emerge as a long term survival. This is what it takes.

All through my research, I have yet to read the first person account of having lived with the same diagnosis as mine for more than 10 years. If I were to be there to torture the grandchildren the same way I did with my kids by taking them to all the boring museums in the world, I would have to become an extreme outlier. Deep down, rightfully or wrongly, I am convinced that I can make it happen, but it will take an unusual commitment to doing everything exactly right. This cancer of mine is a formidable partner, and it will take an extraordinary feat to forge and maintain a peace treaty. Any moment of lapse can trigger a volatile reaction. I am reminded of a movie about a terrorist who planted a bomb on an airplane. The bomb was designed to go off if the plane dipped below a certain altitude. I feel like the pilot who will have to find a way to keep the aircraft stay afloat no matter what - indefintely.

And, there is no co-pilot. Ultimately, this is a lonely endeavor. Even those closest to me and love me dearly cannot do this for me. They can help, cheer, and encourage, but they can’t take the helm. It’s easy to forget what a lonely venture this is when you are going through a treatment. If you are half way good, you are a star performer and the theater is full of adoring fans and enthusiastic audience. There are supporting actors and actresses. They are props and stage hands. Everybody is rooting for a happy ending. By all accounts, it seems I pulled off an extraordinary performance. An element of Greek tragedy at the beginning but with an happy ending. How can you beat that? I had a perfect storyline. A cancer version of “rags to riches” -from the worst diagnosis to a remission victory featuring a courageous heroine. When the show was over, I got the standing ovation. Most of the audience gave raving reviews and went home inspired.

Yet, the show is not over for me. It has only started. The part that was an open performance was only Act One, and I don’t know how many more acts there are – I hope many. Now the theater is dark, and I am left alone on the stage, yet I still dance and sing because that’s what the script calls for, and the script must be adhered to no matter whether there is audience or not. Otherwise, the show will be over, and the show must go on. Paradoxically, it’s my sincerest hope that I will perform in the dark alone as long as possible. I know what it means to open curtain. I would rather that my plight does not become a public spectacle again. And, I also know that I am to perform alone in a dark empty stage night after night so that I won’t have to have a public performance. That amazing performance I just had that resulted in repeated curtain calls – I would like to avoid them. I hope I had my last curtain call. One such glory was more than sufficient for me.

So, I dance alone again – and it is becoming a comfortable routine, but maybe I will do a bit of improvisation. A variety is the spice of life, as the cliché goes, but so true. Perhaps I will substitute a bulb of garlic with a bulb of onion – the same allium family of vegetables with anti cancer properties. I hope it’s easier on my husband, the one person in the audience who hasn’t gone home after the show. Perhaps he has no home to go home to, as this stage may have become his place too. I can see him taking a flash light out, and tries to lighten up the stage a bit………

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Ever,

You put many of my thoughts into your words. Well said. Nice essay worthy of publishing I think. This play, journey, whatever is quite an experience for sure. We continue to learn and evaluate and, hopefully, dance joyfully for many days, moons, years...

Dance on in love and light - not in the darkness please.

Wishing you continuing joy. Keep us posted here. Mary Ann

california_artist
Posts: 850
Joined: Jan 2009

It takes commitment, due diligence, and improvisation all true.

The most telling part of your story is that you are aware and embracing the fact that the person at the helm is you and you alone, and you know where you want go, and you posses the will to do whatever it takes to get to the destination you have chosen.

Control and an unwavering drive to succeed.

Passengers, it appears, do not always arrive at their desired destinations.

You are the one with a dead on vested interest in the outcome.

I will cheer you on and help you in any way I can. I'll even hold the lantern if that's what needed.

Love your spirit,

Claudia

Northwoodsgirl
Posts: 201
Joined: Oct 2009

I read with great interest your analogy of your fight and future. I can so totally relate.
My husband is also the one who keeps the" stagelights burning " in my theatre of the absurd. Why me? Why cancer? Why now?
What am I suppose to learn out of going through uterine cancer at my still fairly young age?
Especially after losing my dear Mother to uterine cancer in 2005 at the age of 72. I search for the answers yet don't expect any. Then I think of my dear great niece who has been fighting brain cancer for more than a year and she is only 2 yrs old.
Thank you for sharing your thoughts about your journey.
My faith is strong....
Lori

HellieC
Posts: 433
Joined: Nov 2010

Please know that you are not alone in your dance.............although you are the only one on your personal stage, there are many of us on our own stages all over the world, performing the same dance, for the same reasons. This production has a huge cast!
Wishing you well
Helen

lkchapman's picture
lkchapman
Posts: 104
Joined: Jan 2011

You should have put a Kleenex warning at the beginning of this.:o)
I don't think I have ever read anything that so aptly characterized the struggle those of us face, who are in remission.
Thank you for this.

Laura

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

An engaging metaphorical piece on living with the post treatment cancer recurrence fears. Once the 'big show' is over the support system disappears and that empty theater can be a dark and lonely place. Perhaps it's time to audition for a new starring role as the engaged, proactive anti-cancer diva. Your knowledge, awareness, and enthusisam could just help others avoid or overcome a potentially similar scenario while keeping you focused and on track to torture those grandchildren-to-be.

May you dance on with strength and vitality for a very long time.
Annie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I come from a different perspective, as I am much further along in this journey than many of you. I remember that there was such a feeling of congratulations and celebration when I finished my initial carbo/taxols and adjuvent radiation in early 2009 and my follow-up CT scan was NED! I remember the joy on my chemo-onc's and gyne-onc's faces to see Vic and I so carefree and excitedly planning our dream vacation to Greece. I also remember, especially in retrospect, the less enthusiastic "So far. so good" that was the response of my radiation oncologist at my wonderful news. I really thought I was cured, and was closing the door to that chapter of my life. Ignorance is truly bliss, and I hope every one of you allows yourself the same blissful confidence that you have won the war, whether it turns out that way or not. The pure joy I felt those 5 1/2 months of remission were WELL worth the heartbreak of my recurrance and return to treatment.

So LIVE as if you've already won! If strictly controlling your diet makes you feel happier and more in control, do it. But if it causes you to unrelentingly focus on your health at the expense of all the pleasures and happiness of earthly life, if that vigilance never lets you stop being 'cancer girl' in your own mind, then maybe you need to find a compromise that allows some flexibility and spontaneity and a break from constant unrelenting battle-mode. And, in spite of all you do, if your cancer comes back, don't blame yourself. Grade 3 cancers are sneaky, dangerous and bad-ass. I've taken such excellent care of myself my whole life, but that healthy diet and lifestyle didn't keep me from getting cancer or keep my cancer from coming back or becoming chemo resistant. I still take excellent care of myself, and I believe my attention to my diet and getting exercise continues to allow me to live a full vibrant life even with late stage cancer that could kill me at any time and constant chemo & radiation treatment since November of 2009.

I don't feel like I'm making my point; I apologize. Certainly I admire your determined plan for sustaining your remission and your 'eyes wide open' assessment of what you're up against. But PLEASE, allow yourself to feel the JOY that remission is. You are planning to stay in ever-vigilant battle-mode. And I guess I'm saying, allow yourself a rest. Allow yourself to believe in your current clean bill of health. And remember who you are and what you loved to do before cancer consumed your every thought, and make room in your life for the carefree woman you once were. Be silly again; be content again. Eternal vigilance isn't living; be easier on yourselves, ladies. Life is short and beautiful, and I want you all to not think 'cancer' with every thing you eat and every thing you do. FORGET cancer most of the time, and look outside yourself at the beauty and richness of life that is yours to enjoy fully when you allow yourself to believe in your own vibrant health again. ((((hugs))))

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda, your comments made me jump in with this thought. In all we read and see in our culture, there is so much verbage & focus around being a cancer "survivor". Frm just about the beginning, my focus has been not being "just" that - rather being a life THRIVER with the cancer-thing being just a part of my story.

Seems like this is one of the kernels of your message.

Joy and blessings to all. Mary Ann

evertheoptimist
Posts: 140
Joined: Jan 2011

linda,

I have read your posts, and I admire your attitude throughout this whole thing.

I actually get a lot of comments about how I should "ALLOW" myself to relax a bit.

Actually, this is far from the truth. The adherence to this regimen is NO sweat at all. Being disciplined is a natural state for me, and having this discipline to do what I think will up the odds most is actually giving a sense of calm and peace.

If anything, if I feel that I am leaving many stones unturned, that will be highly stress-genic. Everybody's psych is different.

The funny thing is, I don't even have a killer instinct to survive at all cost. I don't have this unconditional fetish for "LIVING" at all cost. I am not afraid of death. This is not to say I don't like my life. On the contrary. I have a lot to live for and I would like to live long, but if the quality of life is such that it's burdensome for me and my loved ones, I am willing to go without any regrets. I have no major regrets for big decisions I made in my life, and I have no unfinished business. My kids are on an excellent path. The only issue is my husband. I made a promise to outlive him, and I would like to keep that promise.

I have always been an optimizer and a planner. Optimizing for the outcome of my cancer management is almost like being on an autopilot mode. It almost feels playing a simple computer game like solitaire. you want to get a good score and strive for it, right? that's what's driving me. PLUS, a very big motivation to not burden my family with my untimely death.

culka's picture
culka
Posts: 158
Joined: Oct 2009

I know what you are saying. I'm same. I was hitting for cure before I saw oncologist and during these 6 weeks from diagnosis to hysterectomy I lost that papillary serous. But clear cell and endometroid stayed with me.
Gerson therapy saying 2 years on that strict diet. I stayed with my version of raw food/vegan/breuss/gerson/budwig diet for good 8 months. After that I started slowly reintroduced "bad habits" like ice-cream or coffee.
With every week, every months and now even every year is easier. I don't know for how long I will remain cancer free. I always have my plan B and C ready.

And BTW with your optimistic face you have to be NED. Congrats.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Never mind.

nempark
Posts: 592
Joined: Apr 2010

Very well said Linda. Thanks for the beautiful reminders. Love to all June

nempark
Posts: 592
Joined: Apr 2010

Well written. Love to all June

california_artist
Posts: 850
Joined: Jan 2009

So, don't we all have to plan dinner anyway. Some of us choose to have things that might tend to keep us alive and well longer. It's actually pretty simple, just have the right things in the pantry and fridge to start with and you're on your way.

Deep breathing helps up the oxygen level.
That's pretty darn simple to do.

Some things are just easier to do than to regret not doing. hmm

makes me think of discussion I just had with my daughter where I balked at doing something for her and am now living with the guilt of all.

Best fix that bridge.

sleem
Posts: 92
Joined: Feb 2010

Thank you for expressing so much of what I feel with such a well written from the heart message. The words and manner you wrote expressed what I feel and can't express in words I like to and you did. Thank you so much.

JoAnnDK
Posts: 276
Joined: Jun 2011

Great posts Linda and Ever (what is your first name?)

Like you, Ever, I want to be in control and am compiling as much information as I can in the event of a recurrence. I will be prepared, unlike how I was when I got my diagnosis a year ago (who is ever prepared for that?!?!?).

I really do not think these doctors or nutritionists or mostly anyone else actually know what they are doing regarding most cancers. It is all a guessing game....look at all the differing treatments we in this group have had!!!! If one is lucky, one has a doctor who guesses right. There are lots of variables. It is like buying lottery tickets. I have read so many articles and research papers about cancer and nutrition and the most common words are "may", "might", "could". Not very encouraging and it is difficult for me to buy into anything so vague....it just goes against my rational mind and the kind of concrete thinking that I do.

I liked what Linda wrote<<< If strictly controlling your diet makes you feel happier and more in control, do it. But if it causes you to unrelentingly focus on your health at the expense of all the pleasures and happiness of earthly life, if that vigilance never lets you stop being 'cancer girl' in your own mind, then maybe you need to find a compromise that allows some flexibility and spontaneity and a break from constant unrelenting battle-mode. >>>

I will not allow this cancer to define me because that gives it too much power. I am still the person I was before June 25, 2010…..irrevocably different, but not intrinsically changed.

I admire your adherence to a nutrition philosophy, Ever, but it is not something that would ever be part of my makeup because every thing I put in my mouth would be a reminder that I am, as Linda said, "cancer girl".

As my wise cousin wrote, “One lives, and copes, with cancer. Meanwhile, there's a life to be lived, children and grandchildren to enjoy, and all the rest.”

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Great insight as seems like you've done a lot of insightful research...good for you! I will tell you I'm the type who just has to have some control, and boy oh boy, cancer is king if we let it be. I've done my research for the last 2 years post treatments and found a good setup for me. But...in the end as Linda said if it makes you happier and more in control, do it. Not a guarantee it will conquer us thru any recurrences, but makes us more at ease with thoughts of control.

I admire your continued positiveness to endure and continue on with life. So much of our "getting us thru" is within our own minds. Think positive and keep on plugging as you'll get there.

Who ever gave us a book on how life should be. Continue writing yours and in the end it will turn out to be your book of life.

Best to you and keep up the excellent work!!!
Jan

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am just getting back into "blog" mode and sometimes I wonder if it is good for me; I cry when I read your blogs. Linda, I am back on topetecan and remember when hipec seemed like so much hope. This weekly chemo wears me out and I watch the love of my life run around pulling everything together. I worry who will drive me to rehydration. My hair comes out when I inadvertently touch it. I look back on the wedding and wonder how I did it.

But, do it I did. I understand so the feelings of being alone after treatment.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I can't figure out how this blog works sometimes on my new computer so forgive me. Your beautiful words need to be published. There are times when I cry and wonder if this blog is all good for me and times when I touch your fears and know you are the only one's who can feel it. But sometimes I must move away from cancer; Today it is wrenching the life from my body and I hear the desperation in my husband's voice and my daughter's eyes. I tire of what it does to my family.

Still I love you all. It would be easier to touch you. Wrap my arms around you and love you. So forgive me today. It is one of those wear me out chemo days. Your words ring out to me like the chapel songs when my daughter was married. I did it.
Love, Diane

paris11
Posts: 132
Joined: Oct 2010

Dear Diane,

You gave your daughter, your husband, and all your loved ones, a beautiful wedding and so many beautiful moments filled with LOVE and JOY!

You are courage. We celebrate you.

I still think you will hold your amazing grandchildren.

All love,

Connie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Thank you Connie! You are the flower of my garden. Thank you for the courage. For the celebration!

All love,
Diane

Ro10's picture
Ro10
Posts: 1395
Joined: Jan 2009

So sorry to hear your sadness. Sorry to hear all the side effects you are having from your new chemo. It must be very hard for you. Wish I was there to HUG you and hold your hand and let you cry all you need to cry. It is cleansing to have a good cry, but I know how hard it is to have family seeing you cry. Going for treatment and then rehydration has to be very draining on you. I hope the days get a little better for you. So glad you got to celebrate your Daughter's beautiful wedding. You remain in my thoughts and prayers. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm so glad you were at your daughter's wedding; to see her so happy, and happy that you were there. you did do it! mazel tov! and, i'm so sorry you're having a hard time now; i know when we physically don't feel well, and are worn out, it takes much of the joy out of living. i'm so hoping it gets easier on you, and you don't have to worry about how you're getting somewhere. it will all work out, diane, hang in there. we're all next to you, holding you, so you can only feel better.

sisterhood,
maggie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am doing much better on my new chemo. My problem was dehydration during the wedding. I I am drinking more and feeling better. Thank you for your support and help. We all know how those bad days can hit us. Then I logged in during all of the emotional turmoil.

When I get a day I can skip chemo because of low platelets, etc I am like a girl skipping in remission. I want to thank you for being there for me during a tough time; we all have those and like everyone said, a good cry helps. Thank you! Love,Diane

Roycreamer
Posts: 1
Joined: Aug 2011

That was beautifully eloquent. I wish you luck with your show, you have one rave review from me.

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