Hard Time
January 5th, 2011
Last month, a work friend told me about a gossipy lunch conversation she took part in. Some colleagues were sizing up the real life skills of the research professors in our department, predicting which of us would survive hard time in prison.
Smiling, she told me, “We decided you would make it. You have the skills.”
She knew it was an odd compliment, and we had a good laugh about it. Of course, I hope we never find out if they put their money on the right horse in that race.
I know that her praise was, in part, a nod to coping skills I trucked out this past year. Cancer treatment is definitely hard time.
I suffered a lot. I hated it. But I was a pretty kickass cancer patient. I knew how to stay on top of stuff, chase down information, use my resources, and persevere.
And of course I got by with more than a little help from all of you. So thanks for that.
But now I am entering new waters.
HMS Survivor
Although diagnosis is a process, there is usually a clear moment when you hear the words, “You have cancer.” There is a distinct Before and After that you can turn over in your mind, the moment where everything changes. You slip into an alternate reality and must make your way through.
Survivorship does not have such a clear beginning. There are those who believe you are a survivor from the moment you are diagnosed.
For me, survivorship came in phases. I first felt like a survivor when the Big Treatment (chemo, surgery, radiation) was over and I had the first strange sealegged experience. Then, with my last infusion in November, I was no longer doing anything medical to fight any lingering cancer cells that may not have read my very passionate eviction notice. Finally, two weeks ago, I had a medical apparatus — my port — removed from my body.
Cancer survivors often flash each other their port scars. It’s our version of a secret handshake.
I have a scar now where the port used to be. The Survivor Ship has set sail.
So now what?
I am still tired. My body is different. I have signs of PTSD. Havoc has been wrecked in many parts of my life.
Now that the hard time is over, am I supposed to pick up where I left off?
It’s not possible. Too much has changed since I first heard those words, “You have cancer.”
So today, I went to my cancer center’s survivorship clinic. I spent half an hour this past weekend filling out a few surveys designed to assess psychological, social, and medical issues.
I met with a social worker and a nurse for a total of three hours, which is a luxurious eternity in the medical world. Both were wonderful. They educated me in a way that attended to my particular situation. It has already helped alleviate my anxiety. The nurse produced this beautiful two-page summary of my diagnosis and treatment that I will have to give to all my future doctors. She discussed all the possible late effects of my treatment and how I should plan to monitor and manage them. And she said the priceless words, “You are healing very well.”
The social worker is the first counselor-type person I’ve met with since my diagnosis who I could talk to honestly. I saw two other therapists during my treatment, but neither had an oncology specialty. I felt like I was having to educate them too much, so I quit counseling as an energy preservation measure.
This social worker, it turns out, is herself is a survivor.
I spoke with her at length. My takeaway was this. During treatment, survival took one set of coping skills that could be best described as rallying: my friends, myself, my family. Treatment is about continually picking yourself up and moving forward.
After treatment, survival looks different. From what I gather, it’s more about waiting and acceptance, letting things heal, letting time pass, and allowing your new self to unfold.
I am a problem solver. I am happiest with something to do. I imagine that it’s my capacity to rally that led my colleagues to imagine me as a successful hard time prisoner.
Like my cancer treatment, most jail sentences have a beginning and an end.
Being a survivor, however, is a life sentence.
It seems like there’s a lot of waiting. Waiting, waiting, waiting…
I don’t know how I’ll cultivate the coping skills for that.
Sing it, Gloria.
This entry was posted on Wednesday, January 5th, 2011 at 9:27 pm and is filed under Survivorship, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Thank you so much for this. I couldn’t have stumbled upon it in my Twitterfeed at a better time. My last round is a week from tomorrow, and I have been freaking out (sometimes quietly, sometimes not) about it. I have so many anxieties about “post” life, survivor’s guilt, etc. I’ll check out some resources at my cancer center tomorrow. Everything is feeling so…cosmic lately. Is that the right word even?
xoxo
there are more and more survivorship resources out there, but i find you sometimes have to chase them down. one of my providers assumed i wouldn’t need survivorship care because i am well educated. education is a big part of it, but what you and I are going through requires big time emotional support too! xoxo
Yes to emotional support and education. But we academic types still need some scaffolding. I’m anticipating people dropping off because I’m “done” or they think I’m “healed”. Just one of many reasons I find my last round to be unsettling.
You’re wonderful people, chemobabe!
This is truly brilliant – thanks for articulating EXACTLY the way it is.
xoxo
Nice piece, and so true. I was diagnosed with leukemia seventeen years ago! I had a bone marrow transplants and now take a drug that keeps me in remission. Everyone called me “heroic” for what I went through, but I think it takes way more courage and effort after the worst part is over, the one where everyone around you is still living the dream of immortality and yours smacks you in your face every day.
I was at a New Years Eve party and friends were talking about how different life is now that they’re 50, that all of a sudden there’s less life ahead of you than behind you. I said, “I feel like, for the past seventeen years, there’s always less of my life in front of me than behind me.” Every birthday is a celebration when you heard “cancer” and was given 3-5 years to live, so every time someone complains about getting older, talks about grey hair or failing bodies, you are reminded that every ache is earned, every silver strand is a bit of victory. When your friends say they wish they could avoid wrinkles or dread the AARP invitation, you understand they’re not threats to dodge but gifts to welcome and cherish. You marvel at their denial and understand you know better, that there are legions of women who know better too.
Chemobabe — you are right — being a survivor is a life sentence and your life is irrevocably changed. It takes time to develop a new you, a new life and to “move on” from cancer. The experience will always be a part of who you are and the move from “in treatment” to “survivor” isn’t an easy one. For me, it was like, “okay, now I have to process everything I just went through!” It wasn’t easy. Talking to people who “get it” helps. I think everyone finds their own way through. It takes patience and self-love and understanding. I am still on that journey, but in a fairly “good place”, I would say. I wish you luck with yours!
This is a really really insightful post Chemobabe. You perfectly articulated how my life feels when you say that being in treatment is about “continually picking yourself up and moving forward” . In fact this is my mantra for 2011 as I did fall of the horse a few times last year and it was a real struggle to get back to sanity at times. There’s lots of takeaways from this post and something here for all of us. Brilliant!
This post resonates SO much with me. In fact it was the very reason I set up my own Journeying Beyond Breast Cancer blog, to help me make sense of this post-treatment phase. There is an expectation that when you walk out of hospital on that final day, your cancer story has ended. But it’s not so simple. In fact the reality can be quite different.
We are not prepared for the tsunami of emotions that hit us at times. We can be filled alternately with relief and elation at being given a second chance and with anxiety, fear and uncertainty in the months and years after treatment ends. I felt as if I was in some kind of limbo, not part of my old life, no longer part of my cancer battleground, and not sure of the future.
My emotional and psychological landscape had changed dramatically and I needed to find a new way to be in the world. While the battle for survival ended, a new challenge was begining – how to make sense of the experience of cancer and integrate it into my new normal. Now the time for real healing begins.
Looking forward to journeying with you on this road x
Great metaphor and post. I just had a checkup yesterday and I wondered if I will ever feel any less nervous when I go see my oncologist.
Awesome post. I talk to survivors every day and a lot feel they are alone in their post-treatment haze. Sharing your concerns honestly helps others deal with their own issues. Thanks so much for sharing. If you’re interested in sharing on our blog (http://livestrongblog.org) as a guest blogger, email me. brooke.mcmillan@livestrong.org
Lots of things resonated here for me too – that life ‘after diagnosis’ isn’t about it being the same as ‘before’ – it can’t be, and it never will be. Really well expressed, thank you.
LANI, HRH Surviorship,
You are putting up the sail, my friend.
As I read your post about this morning’s clinic visit I kid you not: tear came to my eyes. I’m so glad to see the curtain coming up on the most difficult transition I faced as a survivor and co-survivor…ending treatment. You’ve been gently pushed — not shoved — out to sea with a map, some guideposts, and the affirmation that “you are healing beautifully.” I am thrilled for you.
Adjustment is hard, and banal but true, it takes time. Surround yourself with light, love and laughter. I think you’ll be amazed how quickly you prioritize and shrug off problems that are not mountains but molehills. You have an open mind and an open heart. With those ingredients I know you will continue to flourish:)
Love,
Jody
I can’t believe it took me this long to find your blog. It’s beautiful; love it. Thanks for your voice. I look forward to following your journey. Be well.
A great post, Lani. I have been reading your blog for over a year, since my own diagnosis last December, and I have laughed, cried and cheered as I read your honest and insightful words. Thank you for allowing me to be with you on your journey, and for being with me on mine.
The journey you described made me think of a boomerang, where you were flung out of the mundane and pitched aloft to fight for your life, only to return after your treatment back into the stream of things. Except now, you are waiting and hoping that nothing strikes out of the blue once more. What an emotional toll! Thanks for speaking so candidly about your survival. I wish you health and old age. Cheers!
I found you through the Livestrong blog. Thank you for this post. I was diagnosed with a stage II melanoma in April 2008, and completed surgery and treatment. I was diagnosed stage IV last June. I finished five rounds of biochemotherapy, and will have my first follow-up PET scan next month. I’m entering the space of “survivor who still has the illness.” I probably always will, though it may or may not kill me. I don’t know how to navigate this. Thank you for the assurance that it’s okay to take time.
2 years after the last treatment-day, i still wondering what, where and when is survivorship… a concept understood only by the survivors. That’s such a fatigue!!
Thx Lani for this great post!
Chemobabe, Great post here summing up how I feel too! Although I still have stuff “to do” concerning my reconstruction and another surgery because of my brca status, it does feel like I am kind of done with the “real” stuff of cancer treatment. Sometimes it does feel like I am just waiting to see what happens. I can tell this part of survivorship will be more challenging in some ways.
Wonderful post. For me 2009 was the physical battle and 2010 was the recovery. And recovery has been the emotional battle. The roller coaster is not quite as high but it still continues to roll along, up and down. I did not want to be called a survivor until the treatments were over. Now people ask me how I am, “Are you all better?” ..all cured?” I have started to respond with “I hope so”, instead of “yes”. Then they recognize that I still have fears or side effects. Or they blanch and say nothing, which tells me they didn’t really want to know the real answer and were asking out of politeness.
Keep up with your honest posts!
Lani,
Wonderful post. I was especially struck by the part about how you had to give up some of your previous counseling/education to preserve your own energy instead of educating the providers. That really hit home. I need to remember to learn ad much as I can about my patients’ diseases and fears and concerns so that I can really work with them and help them, not be an anchor dragging them backwards as they try to set sail on their way to recovery.
Thank you for that gift.
I am so glad that you are moving along in a positive direction. The strength you show in your writing is, as I have told you before, a true inspiration for all of us who read it.
Have a great week and keep writing!
Greg
Thanks. Thinking of you.
Mark
Great post! I plan to republish it in February 28 as a Guest Post at Being Cancer Network. I will include two links to your site as well as a link to your original post. You may see an increase in traffic. In addition this enters you into our “Honor Roll for Excellence in Cancer Writing.” I will send you the code for your award badge. Keep up the great writing!
Take care, Dennis
Hi. This is a wonderful post. You’re right when you said that you can’t just pick up where you left off in life before you were diangosed with cancer. You are a different person now. I believe that what you’ve gone through has made you a stronger person.
I don’t know what it’s like to hear the words “you have cancer” but I do know what it’s like to hear that someone I love dearly has cancer. My focus in life changed.
Thank you for sharing your thoughts. ~Kathy
I love your writing; you are able to express in words all of my emotions. You are a couple of months ahead of me in this journey. I had my last Herceptin treatment in April and was turned loose for 3 months. All of the strength and smiley faces I had in treatment disappeared. The realization of it all hit me like a bomb. I am doing better now, but wish there was more support for patients AFTER treatment. People ask me if I am cancer free and I tell them what my oncologist told me: “We really can’t say that.”. Thank you for expressing our thoughts and helping us realize that what we feel is normal.