The limbo that is survivorship . . . well, at least I can cook . . .

17 Mar

According to the Centers for Disease Control (CDC), there are nearly 12 million cancer survivors in the United States. That is a pretty big number. The CDC defines a cancer survivor as “anyone who has been diagnosed with cancer, from the time of diagnosis through the balance of his or her life”.

According to this definition, I was a “survivor” the same day I became a cancer patient. I sure didn’t feel like one.

There are many definitions of survivor. The CDC’s definition seems to be the most broad. But, regardless of how “survivor” is defined, survivorship care is something that seems sorely lacking. While survivorship care is a hot topic for blog posts, books on life after cancer, and websites like Livestrong and the Mayo Clinic’s website, there seems to be a disconnect between what you see online or in print and what you actually get from your doctor. Obviously, I can only speak from my own personal perspective. But, I really do not see a lot of attention given to survivorship care.

In fact, it was me that brought it to my doctor’s attention – the idea of survivorship care. I brought material I had printed out from the internet on how to put together a survivorship plan. I have yet to have a successful meeting with a doctor about this. But, I am hopeful that at some point in the future I will. Until then I feel like I am in a sort of post-cancer limbo.

One of the few things I CAN control is what I eat: Saturday's dinner: broiled monkfish and organic cucumber and tomato salad.

When you are newly diagnosed there is a lot of attention given to your care (at least that was my experience). There was a plan to follow, a defined course of action. There would be months of chemotherapy, a year of herceptin treatment, a bi-lateral mastectomy and reconstruction, a lymphenedectomy, radiation and hopefully the end result would be “no evidence of disease”. It has been a tough two year journey to today. I am incredibly happy to repeat that my last set of scans were clear.

But, now there is no plan, not really. There is the diet that I employed during treatment (that I hope to become more vigilante about) and regular exercise. There is Tamoxifen that I will start taking again (I went off of Tamoxifen nearly three weeks ago due to some very difficult side effects) and I hear I should be drinking green tea daily as it reduces the effect of estrogen in your body. But, no real plan.

The cancer I had was aggressive. I am told that I have about a 50/50 chance of having it come back. Aside from going back on Tamoxifen and being careful about my diet (little or no alcohol, lots of vegetables, eating organic, etc), I don’t have a plan of attack.

Friday's dinner: baked chicken breast with garlic and bread crumbs, cranberry couscous and a spinach and butter bean salad (all organic)

I feel that I need a plan and that I need one soon. It was almost easier during treatment in some ways because at least I knew what I was doing and that it was the right thing to be doing. Now, I feel as though I am hanging in the wind.

Take this weekend for example. Friday I put in a full work day and then made dinner for my family (new recipes of my own creation – healthy, organic and tasty to boot).

After dinner my back and arms started to really bother me. Before I knew it, I desperately needed to simply lie down. I called it an early night and hoped to feel better in the morning. The pain kept me awake. The next day I decided to go into urgent care.

I believe the pain is from the surgeries I have had – muscles and flesh have been rearranged and this takes time to heal. But, I really don’t know. All I know is that with pain comes worry.

You see, once you’ve had cancer you look at pain differently, you experience pain differently (at least I do). Bone pain could mean metastatic cancer. Headaches could mean metastatic cancer. When I feel good, I simply feel good and believe me, I relish in that state. I relish it because it is in those times that I feel the most removed from cancer. But, when I am in pain, it brings me down in a way that I have never known before and it can be debilitating.

The beginnings of the fritatta I made on Sunday morning. Spinach Fritatta: Step one: saute tomatoes & onions.

So Saturday I went to urgent care. I saw a doctor whom I have never met so naturally he had to be filled in on everything from the past two years. He looked at my back, saw the scars left from surgeries and asked a lot of questions; some of which seemed related to my visit and some simply I think out of his own curiosity (like: “So did they use implants or is that your own tissue”). It was kind of like being a circus freak in an exam room. Or maybe a science project on display. Okay, maybe that is a bit much, but, it is sometimes weird to be treated by doctors (of the non-oncology persuasion) who don’t see someone like me in their office’s much . . . they get curious.

After some discussion, he asked me what I would like him to prescribe and asked me the dosage. On the one hand, I was glad to get the drug of choice that I felt would best address my immediate problems. But, on the other hand, I felt sort of frustrated. It just underscores what I have been feeling for some time which is that once you are out of chemo, surgeries, radiation, etc. you are sort of on your own trying to navigate things.

There is a deference that doctors seem to give you once they see your scars and see a bit of how much you have suffered – I think they just want to give you whatever you might want to make you feel better at that moment. (Trust me, I could become a walking pharmacy if I wanted . . . but, I DON”T want that). I also, think that some doctors defer simply because they do not know what to do . . . somehow telling my doctor the drug and the dose I would like is not a very comforting feeling.

Spinach Fritatta Step Two: Add fresh spinach, a few tablespoons of water and saute until spinach is tender. (I am embarrassed to admit that I actually videotaped cooking this meal . . . I am a geek).

So, this brings me back to the beginning of this blog post – the need for survivorship care/plan. As someone who played a very active role in my own treatment and making decisions with my doctors, I am more than willing to be half or more than half of my survivorship care team. But, it just isn’t clear what survivorship care even means. When doctors don’t know, it is discouraging. When I ask my doctors about it I feel like I am asking for something that hasn’t been invented yet.

For me, I would like survivorship care to mean managing my health in such a way that I do everything I can to reduce the risk of a recurrence and to recover more fully physically and emotionally. For me, the more improvement I have on the physical front, the better I feel emotionally. The two are very tied together for me.

I know that my life now is different. I accept that. But, I don’t intend to give up on my expectations of a more full physical recovery than I have reached. I do not intend on giving up on attaining better strength and endurance. I accept that it may never be the same as before, but, I want to be better than I am now.

Spinach Fritatta: Step 3: set aside the cooked tomato, onion and spinach mixture. Step 4: Beat 4 eggs (I made this for two) and pour egg mixture into a hot, olive oiled skillet. Use a large enough skillet that the egg mixture remains fairly thin (about a half inch). Allow eggs to cook for about two minutes and then add the vegetable mixture. Continue to cook and then, if you are feeling lucky, flip it (I was successful in my flip THIS time) Continue to cook until you reach the desired firmness. Step 5: EAT. Note: I did not use any cheese (I avoid food with estrogen in it, but, this was really tasty without cheese)

I want to know what to do. I want someone in the medical profession to at least be a guide for me in this part of my journey. I get it . . . much of an oncologist’s day to day experience is treating patients who are in crisis mode . . . patients who are currently battling the disease. But, to me, the potential for a recurrence is crisis mode. I want to stop feeling like a ticking time bomb. I want to be vigilante. I need a plan. I realize I will never truly live cancer free – it will always be on my mind in some way some of the time. But, I want to have a plan of action – not so that I can keep thinking about it constantly (the cancer) but, instead, so that I can put it (as much as possible) aside. Having a plan would allow me to move on in a way that I have not yet been able to do. Being in limbo is difficult. I want to know that I am doing everything I can to get better, to be as well as I can be, to enjoy the quality of my life and to survive as long as I can. That is what I would like survivorship care to mean for me.

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17 Responses to “The limbo that is survivorship . . . well, at least I can cook . . .”

  1. Sandy March 17, 2011 at 9:47 PM #

    Lisa,

    Just how many sets of dishes do you own?! 🙂 Your food looks amazing, and I speak from experience when I say it’s delicious.

    As for survivorship, I’m afraid that the medical community may not have the answers you’re looking for. It sounds like you’re doing everything you can, and that may have to be enough. *hug*

    Love,
    Sandy

    • cancerfree2b March 17, 2011 at 10:05 PM #

      Sandy,

      Oh how funny, yes, it does look like I have many sets of dishes. Actually I don’t. The three plates pictured are all one of two matching plates (so these represent three sets of two) 🙂 The yellow and blue plate is from a set of 8 that I had many years ago and gave away gradually over the years (all but two remaining that I intend to keep). The blue and yellow plates made a great cake plate and so over the years I made cakes and delivered them on these plates to friends. Every now and then I get served on one of these plates at one of my friend’s houses. It is kind of charming . . . I know they think of me when they use it and I think of them when I use one of the two I have left 🙂

      I parted with the last one nearly ten years ago 🙂

      The other two plates are just each one of two matching plates that I picked up over the years for dinner for two.

      I would love to cook for you some time. I miss you!

      Love,
      Lisa

      • Sandy March 18, 2011 at 6:22 PM #

        Lisa,

        I miss you, too! I think SuperMex is calling us…

        BTW, I found out today that one of my new work friends is a breast cancer survivor. Her story has many similarities to yours: 2 years of actively dealing with the disease, soreness and loss of mobility from scar tissue, three surgeries to complete her reconstruction, fighting for medical care, fighting for prescription drugs… and now getting used to frequent medical check-ups as part of her life from now on. What I want to stress, though, is that she’s a beautiful, classy, professional colleague whom I would never have known had ever had cancer if she hadn’t told me. That, as I see it, is the good news.

        Love,
        Sandy

  2. nancyspoint March 18, 2011 at 5:38 AM #

    Lisa,
    You covered a lot of ground in this post! Like you, I have so much trouble with the word survivor. I’m not even entirely sure why. As for the survivorship plan, it seems like such a simple idea. It’s hard to figure out why the medical community doesn’t emphasize this more. I think they are just starting to get on board. Your statement about feeling like you’ve been left hanging in the wind is so descriptively accurate. I love that statement, but what it means, not so much. Anyway, I guess we have to take responsibility for our own plan and muddle through the best we can. Oh, and by the way, it looks like you can indeed cook! Maybe that means you have more of a plan in place than you realize!!

  3. Jody Schoger March 18, 2011 at 8:44 AM #

    YUM:)

    If the word ‘survivor’ or survivorship is problematic? Ditch it. Really. One word doesn’t always fit all. You are already on the right track with your attitude and changing the things you CAN. I love the food pics and your discussion of a health plan. None of us should be discharged from cancer treatment without one.

    Keep up the great work,
    Jody

    • cancerfree2b March 23, 2011 at 11:00 PM #

      Hi Jody, I am only just now seeing your comment. Thank you 🙂 I have always been a bit troubled by some of the breast cancer terminology. I guess it is mostly just problematic because there doesn’t seem to be a consensus as to what these terms, in the cancer context, even mean. I want to be able to speak with my doctors and be able to use the same language.

      I appreciate your feedback. I appreciate the reminder to focus on changing the things that I can. Diet and exercise and how I percevie things, those are probably the most within my control . . . so . . . time for me to get crackin’!

      Thank you again for your comment!
      Lisa

  4. cancerfree2b August 24, 2013 at 9:44 PM #

    Reblogged this on cancerfree2b and commented:

    I came across this post from some time back about survivorship and the limbo of it all. I was struck by the fact that I was cooking so much back then. I am reposting this again to simply remind myself that a) I CAN cook (so I have NO excuse for letting that go for the most part lately) and b) I am much better these days than I was back then, except that I was a better cook 🙂

  5. The Presents of Presence August 25, 2013 at 4:12 AM #

    I dislike the term survivor as well and I never use it when referring to myself! I say I had breast cancer or I endured BC. I am glad you reblogged this post ~ I love the idea of a plan for life after BC. There are a few books to read if you’re interested…some that helped me. And I had terrible side effects from Tamoxifen so I had my ovaries out. Just thought I’d tell you!
    I love that you cook ~ I dislike to cook but your food looks amazing! 🙂

    • cancerfree2b August 28, 2013 at 1:25 PM #

      Hello! Thank you for your comment and yes, I would love to know of the books you refer to, thank you in advance!

      I began to have bad side effects from Tamoxifen and have recently taken myself off of it. My oncologist does not agree – of course – and I understand that. But, for me, right now at least, that is my decision. I stopped it about a month ago after having simply unbearable pain during the night, no sleep and poor quality of life. I also stopped it believing that a biopsy in June was benign. I have since found out that this may not actually be the case. I have the bottle of Tamoxifen in a drawer next to my bed and contemplate starting back on it (almost daily, I consider it) but I will wait to hear of my biopsy results. I stopped the Tamoxifen AFTER the lesion appeared on my breast (what is left of my breast – I had a bi-lateral mastectomy) and AFTER I learned that it was supposedly benign. Have since learned that the testing was only for skin cancer, so my oncologist is running breast cancer markers on the tissue block to see if there is anything to worry about. Hoping, of course, there is nothing to worry about. Sigh.

      Thank you for your comment, sorry for my verbose reply!

      All the best to you!
      XOXOXOXOXOX
      Lisa

      • The Presents of Presence August 28, 2013 at 7:23 PM #

        I am here for you. Please reach out even just to know that someone else understands what you are enduring. xoxo
        I stopped Tamoxifen as well ~ hated it and oncologist didn’t agree either. So I had ovaries out instead.
        One of the books I recommend reading is by Louise Hay, “You Can Heal Your Life’ and if you search it on my blog, you’ll find I wrote about it as well. Feel free to reach out ~ I’m always here for you! Big, healthy hugs xo

      • cancerfree2b August 29, 2013 at 11:06 PM #

        Thank you so much! I will definitely check out that book and thank you for the offer of support, it means so much, more than you know. I have not have not had my ovaries out. Thinking about it. My one wants me on Tamoxifen or Lupron (to shut down my ovaries) and then an AI, or as a last resort: have my ovaries removed and then an AI. I don’t like the idea of another drug, especially the AI as I have heard the side effects with that are even worse.

        Sigh.

        I am in a good mood about things for the most part. I am definitely taking more time for myself, enjoying the outdoors and just doing things that I enjoy. I know that ultimately this is the best I can do.

        Thank you again for the support and for the book recommendation.

        XOXOXOXOXOX
        Lisa

      • The Presents of Presence August 30, 2013 at 5:29 AM #

        Lisa, I had the opportunity to do lupron as well, but I opted for the ovaries out b/c like you, I wanted no more meds. You have to do what YOU feel is right with all the information given to you by your doctors. I’m so happy you’re in the good mood! Stay healthy! Keep in touch! xoxoxo

      • cancerfree2b September 1, 2013 at 10:33 AM #

        Thank you! Yes, it is so important to be able to make our own decisions. I think that is what has troubled me most in the past couple of years is that I have felt like I have been simply doing what I am told to do, but not necessarily behind it. As a result, I have not felt good about it. I am glad that you had the confidence to make the choices that were right for you. That is so important!!!
        Thank you for your comment! All the best, my friend.
        XOXOXOX
        Lisa

      • The Presents of Presence September 2, 2013 at 3:55 AM #

        Big hugs to you Lisa! Keep healthy, keep happy and keep inspiring us all in your journey! xoxo

      • cancerfree2b September 2, 2013 at 7:36 AM #

        All the same right back to you!
        Love,
        Lisa

  6. Cancer Curmudgeon August 25, 2013 at 12:34 PM #

    I see a few comments questioning the word survivor, and I’m not fond of it myself; I still call myself a patient because the cancer center treats me that way when it comes time to make appointments and so forth. But the bigger issue for me is the post active treatment plan (for lack of a better term). My issues are actually even more basic than what you mention here. Too much detail to include here, but I will tackle it in my own post at some point. Not that I think it is great that others such as yourself are struggling with this too, at least I know it isn’t just me and my failure as an informed or intelligent patient. I still have much frustration over this issue in my care.

    • cancerfree2b August 28, 2013 at 1:19 PM #

      Thank you for your comment 🙂
      I hear you, I don’t care much for the survivor word either. Mostly because of the connotation that those of my friends who did not “survive” cancer are not “survivors” and it ties in with the whole language (which I have even used myself) of “battling” and being a “warrior” and when a person dies of cancer they “have lost their battle”. I really do not like that. I did feel like I was in battle when I was going through chemo and radiation and surgeries and Herceptin. But, that is just how I felt at the time. And should I not survive, I really would not want people to say that I lost my battle. Life in general can be viewed as a battle and ultimately it ends in death, so does everyone who dies (which is, after all, everyone) a loser? No, of course not.

      All of this is not to say that I don’t get the “warrior” and “battle” language (I used it too) but, I just don’t like the implications of it; that is somehow suggests that the person who “lost their battle” either did not fight hard enough or that the cancer “won”.

      I hope you are doing well and I am glad that you are an intelligent, informed patient. It is the only way to be, even if it proves to be frustrating, it is, in my opinion, the smartest thing.

      Thank you again for your comment!

      All the best to you in health!
      XOXOXOXOXOX
      Lisa

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