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.