I just finished teaching 8 weeks of classes. It was intense and demanding and it was the first time teaching this course since I finished treatment for breast cancer. When I was first diagnosed, I was not sure I would ever finish treatment, survive this long, go back to work, or ever feel better. Teaching was hard. But, I am back.
I am, piece by piece, attempting to get my life back.
I remember joking with a friend of mine this time last year after he remarked how it was good to see me still in one piece . . . I laughed and told him that it was “the piece that was still left”. (After all there had been surgeries and parts removed).
I thought it was very funny at the time. I know some of my friends thought it was odd that I made fun of my disease. But, it was how I survived. I was not going to let cancer take away my personality and I was not going to go down feeling grim and ruined by this disease.
I laughed a lot. I cried too. I still do both.
As I work to navigate the post cancer waters I realize that there really is no “post cancer” – at least not the “post cancer” I might have envisioned. There just is not this “Oh, you’re done with cancer now, go back to the rest of your life” kind of end to things.
When I was first diagnosed with breast cancer I just wanted to live. I never really worried about what life after treatment would be like. I just hoped to be lucky enough to make it to that point. Now that I am here, the waters are a bit murky.
For those of us who are lucky enough to be told we have “no evidence of disease” we live in a kind of post cancer limbo. Sometimes it feels like navigating a land mine.
We know that the cancer could stay away 10 or 15 years, maybe even forever, or it could come back next week. It is a tough place to exist. None of us, cancer patients or not, can know what tomorrow will bring. But, cancer patients know what tomorrow could bring. And as a result, we live with cancer. For some of us, it is always in the back or front of our minds.
I realize now that I probably need to change the title of my blog from “My journey to becoming cancer free” to something else. That title was written from the perspective of a naive, hopeful and optimistic newly diagnosed cancer patient. I am still optimistic and I am very hopeful. I am optimistic that I can beat the odds. I am hopeful that I will never have a recurrence. But, I am no longer naive enough to think that I will ever truly live cancer free.
Cancer, plain and simple, turns your life upside down. There are so many twists and turns and there are days when the bottom of everything seems to fall out. Some days just don’t come together for me. As I push the envelope to regain another piece of my pre-cancer life, I sometimes find that I need a day to recover. Some steps forward – especially the big ones – require me to take a step or two back.
In the early days, I just wanted to survive. But, now I realize I have become greedy. I want to have my life back the way it was before. I want to be able to run just as far, to be able to physically do all of the things I could do before. I want to play stand up bass with my band for four hours straight in a night club without being tired, without ending up with lymphedema. I want to climb a tree if I want. I want to do cartwheels. I want to swim out past the pier. I want to go surfing again. I want to try new things. I want to travel, I want to finish writing my book, I want to make ends meet, I want to live without cancer.
And then, I think of a friend of mine who has stage IV cancer and I simply feel greedy – greedy to want more than what he has to settle for every day.
He told me that he lives his life in three-month chunks (in between the scans he has every three months). I am in awe at how he copes with his disease. Somehow he lives his life without cancer stamped all over it. And yet, it is there, every day. He goes to work, he creates things and he navigates a constant medical maze of hoops he must jump through just to schedule his routine scans. And as I write those words, I know there is absolutely nothing routine about his scans. What I am in awe of is that while he fears the results of every set of scans he still manages to enjoy his life on a daily basis. I think he lives his life on purpose now . . . if that makes any sense.
The best I can do “post-cancer” is to take the best care of myself that I can and to do the best I can to piece my life back together. Not every piece will fit. And there are new pieces too . . . this blog for example and my desire to do something to change the face of this disease. I haven’t figured out what that is yet. But, it is something I feel compelled to do. In the meantime, I have to be kind to myself, to allow myself those days to recover. And, when I do take days to rest I need to not think of it as being hijacked by cancer. Instead, I need to think of it as how I am piecing my life back together.
cancerfree2b 
Congratulation, Lisa, you are doing awesomely great. Awe is the word I felt about you and how you are handling your new life, before you used that word about your friend with Stage 4 cancer. I think you are charting a map for others to negotiate this minefield.
Love and continued prayers,
Sally
Dear Aunt Sally,
Thank you for your kind words. I am so glad to hear of Monday’s good news! I have been thinking of you.
Much love to you,
Lisa
you articulate the murkiness so well.
during treatment, i remember saying to my survivor friends, “i just want my life back!”
they would kind of pause, compassionately, awkwardly. “it’s not *exactly* the same,” they would tell me.
“how? how is it different?” i was desperate to know. “is it bad?”
“not bad, just different.”
yeah. so this is what they meant.
now we know.
Dear Chemobabe,
I remember talking with survivors early on too and hearing the same thing. So, now we know what they meant.
Along with my distaste for the color pink, I have also learned to really resent the term “new normal”. Ugh. I remember going to a group and being told that “I would find my ‘new normal'”
Granted, it may be true, but, I am still clinging to the idea that I will run just as fast and just as far as before . . . maybe even farther.
🙂
Lisa
eye opening post, never thought about post cancer life like that. it is good to read that you are trying to get life back on track, i guess that’s the best you could do. good luck
Thank you Recovery.
Lisa, Thanks so much for finding my blog, it has led me to yours! This post sums up so many feelings that I, too, have about my so called “new normal.” (I am starting to like labels even less than I did before cancer). I still have some stuff to get done, but most treatment is over for me too. I am amazed at how so many people think one just picks up and carries on after cancer. You are doing exactly what so many of us are, picking up the pieces and putting your life back together the best way you can. I’m attempting to do the same. Lots of us are!Good for you for returning to teaching and I hope your friend is doing alright. Great post!
Dear Nancy,
Thank you so much for your kind words. I am grateful to make your acquaintance and have especially enjoyed reading your blog. Incidentally, I found your blog through Chemobabe’s facebook page.
I am glad to hear you are nearly done with treatment. I am done with treatment, with the exception of completing 5 years of Tamoxifen. I am struggling with it and have recently stopped taking it as a result of those struggles. It is a difficult thing knowing that it reduces the risk of recurrence so significantly in estrogen responsive breast cancer. But, I have developed quite a bit of eye pain and some vision problems while on it and so I have stopped taking it for a time. We’ll see how it goes.
I hope it isn’t reckless or careless to go off of it, but, at this point I decided I needed a break.
But, I digress. 🙂
I really enjoy your blog. And by the way, I am sure that readers DID miss you while you were on vacation. I will put a link to your blog on mine so that my friends and family can be directed there.
Keep up the great writing. I am impressed at how prolific you are. I need to write more. 🙂
I hope you are doing great and that every day gets better and better!
Best to you!
Lisa
Reblogged this on cancerfree2b and commented:
Just reread this post from some time back and realizing how far I have come and how grateful I am today. 🙂
11 years later and I am still trying to work out my post cancer life…. My life changed for ever when Lymphoedema started… It is a constant reminder of what might have been …
I am so sorry to hear that you have lymphedema – such a painful and debilitating malady. I am so very sorry that you suffer with this. I have had only minor issues with it and fear it progressing. When I have flare ups it is so uncomfortable and so painful. Even though it isn’t incredibly noticeable, it still hurts and interferes. I know many who have it far worse than I have ever had. I realize that it can come on at any point in a person’s life. I wish you relief from it. You would think that there would be something that would be effective in treating it successfully, but I don’t know of much. I am so sorry you have to deal with this, and the constant reminder of what might have been. Hugs and prayers to you.
XOXOXOX
Lisa
Thank you and Hugs to you too… There are certainly people who have this much worse than me and maybe one day they will find a way to cure it… Xxxxx Helen xxxxxx
Lisa, it takes time to find and accept ‘the new normal’ for those of us who have survived any illness let alone breast cancer. But having come 11 years down the road, I can tell you it’s a process, that you must be patient with yourself and find the good in every single day. We have been given the gift of knowing that all of us are blessed with the Presents of Presence and we reap those present moments greedily ~ taking the joy from each special moment we are given. Cancer stays in the back of our minds, but we know the specialness in having survived and in gaining this perspective. Big hugs to you ~ and to your friend. I wish I could take cancer away from us all, but in the meantime, we’ll just carry on and help each other through the valleys and celebrate the triumphs. ♥
Hello again 🙂
Thank you for your very thoughtful comment. I am so happy for you that you are 11 years down the road! I agree that it is a process for sure. Each day provides the opportunity (for which I am very grateful) to improve and to experience new and positive things. That is where I try to focus. Some days it is easier than others for sure. But, overall, I “greedily” go after those present moments of JOY! 🙂
Thank you again for your comment, I truly appreciate it.
All the best to you and continued great health!
XOXOXOXOX
Lisa
Lisa, Keep smiling, stay grateful! Look up to the sky everyday and count your blessings! Stay in the now, try not to worry and laugh whenever you can! May you be healthy and cancer free forever! xoxoxoxxoxo
Awe, that is beautiful, thank you so much!
All the best to you! Hugs 🙂
XOXOXOXOXOXOXOXOX
Lisa
All the BEST to you! ♥ xoxoxo
dear lisa,
how your post resonated with me, thinking back on how both hugh and I,each having cancer, then, so luckily and happily sharing remissions, so hard won and yet, feeling deeply the grief as we realized life would never be the same. we both loathed the term “new normal” – it seemed like something imposed (and it was!). clearly, we needed a way to define a world of new hope and new dreams, one that did not constantly refer to the terrible losses of our former lives of having cancer together. we came up with “life re-invented”, a term we felt gave us real choices and a sense of renewal and the possibilities of new adventures as opposed to the defeat of having so much taken away by stupid, fucking cancer. and life re-invented it was! we savored every moment we were free of the demands of what had been our dual cancer calendars, and began writing in so many happy occasions, along with little posts of the delights of simple and ordinary days. we never aspired to climb mount Everest, but we did promise ourselves to seize the moments, the days, and make them what we wanted them to be. now that hugh is gone, I am so glad we had that beautiful time, quietly and happily savoring life, living in the moment, and being able to free ourselves for lovely periods of time to feel such wonder at simple things – taking hot toast and jam and our coffee sitting in the soft light of morning on the patio, daily walks at dusk to watch the moon and stars appear in the sky, putting together a picnic lunch and driving to place where we could explore nature, and, at times, living it up with a few trips to once again be in old haunts we’d loved for years. now, as a new widow, I feel such gratitude and hope that I will be able to as some one said, “use that blueprint of a life that is meaningful and well-lived” to guide me towards better days.
love and light,
Karen, TC
Oh Karen, how beautiful that is that you and Hugh chose to live that way. I am so sorry for your tremendous loss. I am glad that you have these wonderful memories to cherish and carry you through. What a beautiful, beautiful comment, thank you, you made my day. Truly beautiful!
It is the simple things, really. I lost sight of that I think at some point along the way, as I returned to work and struggled to do that, I think I lost some of the joy that is everywhere to experience. I am grateful to have that back in my life.
I love your quote: “use that blueprint of a life that is meaningful and well-lived’ to guide me towards better days”
I wish you all good days and joy.
Love and light to you too!
Lisa