martyrdog's Cancer Blog
February 16, 2009
A couple of decades ago (tempus fugit whether you’re having fun or not) as our marriage counselor was telling us about the process we were beginning, I asked, “How do you graduate from this?” I was grasping to learn how we would when we were better and could move on. I was trying to establish the rules before I went on a trust walk with my shrink. My counselor’s answer was something like, “You’ll just know.” I felt then it was disingenuous and that she probably meant “when you run out of money.” What I learned during the next year or so was that you get so tired of the emotional roller coaster, the cost and the inconvenience of having your life stopped, flipped, poked and prodded that you can’t stand it any longer and that “you choose” to move on or get damned to the dark side forever. You “choose” not to be crazy. You “choose” to practice pretending that things are okay until the practice turns into healthy habits and manufactured joy turns into real joy.
I realize that the idea of practicing pretending things are okay might sound about as unhealthy as being yourself when you are bat-sh*t crazy, but I don’t think so. There’s little any of us are good at without practice and exercise. For instance, I was no good a depression, until I started trying, now it comes naturally. Ditto reading, a good backhand, being a smart ass or dancing. The headmaster at my daughter’s school described the way he taught behavior modification by dancing a jig while repeating, “this is the dumbest dance I ever did” at an increased frequency as he his dance steps became more and more practiced and refined until they no longer looked dumb.
Where the heck is he going with this, you might wonder. After diagnosis and between treatments and testing, each of us fortunate enough to have the chronic version of this disease, has to figure how to fit back in to the remnant of our normal life after the letter “C” was branded on our foreheads and into our minds. The cycles are always different and often we don’t succeed before the next round begins. But we have to find ways to get back to the glee. To find ways to get beyond the pain and the fear in order to even carry on a normal conversation or laugh or be empathetic to someone outside our not-so-exclusive club. They don’t teach you about this in cancer school. While there hundreds of books and tens of thousands of blogs about being positive and being spirit-filled, most doctors just tell you to read Lance Armstrong, toss you a script for Prozac and tell you to comeback in a few months. Well, I have pretty much given up on the hope of winning the Tour ‘d France and the variations of Prozac made my mind so fuzzy that I couldn’t win anything but the race to lie down and close my eyes.
So, I “chose” to practice self-deception. To make an active decision to wash my brain and try being normal. Each day, a rehearsal, if you will. To play a role as convincingly as possible that I’m okay. That I am happy. That I can accomplish things. That I can positively make this world a better place. And with each day of practice, I get better at it. It feels more natural. For long moments at a time, I almost forget the other role. And since I’m the only judge of my performance, who is to say that what I pretend isn’t real and it is the cancer that is crazy?
February 6, 2009
Most of us have it. Doctors don’t know how to diagnose it, treat it or cure it. But they hate it none the less as it gobbles up their patient time and clogs their waiting rooms. Insurance covers it, but they call it something else. There’s no pill to take and big pharma is not seeking one. There’s no funding for research and no walks to raise it. It’s one of the tragic side effects of almost all types of cancer if you are fortunate enough to live long enough.
The symptoms: anything and everything that reduces your remaining quality of life left untreated because of the cancer-colored glasses our physicians wear. It might be a cough or a fever. A pain or a palpitation. A burning or tingling. A limp or lump. A loose stool or falling from one. Canceritis. The elephant-sized diagnosis in patient files that prevents us from being treated for normal abnormal things.
The typical course of treatment: antidepressants and an offer a script for pain. Exotic tests, referrals to specialists and follow up appointments. The war against Canceritis is one of attrition. Whatever it is de jour will probably go away in time if the cancer or old age doesn’t take us first.
Oh, we long for times of old. When we had one doctor who knew us, really knew us and treated everything. Now, in addition to our oncologist and hematologist, we also must have our neurologist, gastroenterologist, urologist, pain manager, orthopedist, cardiologist, endocrinologist, dermatologist, surgeons of each ilk and so on, ad nauseam. Each with their 30 to 90-day appointment wait. Each with their patient history, insurance, privacy forms and co-pays. Each with their normal waiting cues of less than, but not much, an hour, before being shuffled to an eight by ten magazine-less room to wait less than, but not much, a half hour, before being interviewed for five minutes by a PA, only to wait for less than, but not much, another half four, before hearing the doctor in the hall getting their 20 second briefing of our patient history that prepares them for their five minutes with us while talking on the phone and holding our films up to the light.
Sure, they’re exceptions. It’s related to cancer, for god’s sake. Nothing the same. Sure, we make it worse. After all, we must be our own patient advocate. Changes are the canary in our coal mine. We’d be foolish not to do our research and jump headlong into new theories for answers. The doctors must surely blame it on the “internets.” It’s probably just stress. Or a cold. Or arthritis. Or IBS. Or a side effect our meds. Or an allergy. Just makes you want to stay in bed and pull the covers over your face.
Posted on this is oh so true!
really like how u blog this is something we all can relate to!
Posted on Marty:
I loved your post…you really have a way of summing up all of the absurdities we all experience with the Cancer cog. Add to your list,,,talking to your doctor about your future existence half naked with a sheet! We all need to laugh at all of this. As a wise lady told me about laying there with the covers over her head, feeling sorry for herself. “I’d get too hungry!” We can’t lay there with the covers over our head, though we sometimes feel like doing that. Keep on writing, you do it very well.
tmay
Posted on Love this post. How did I get so many doctors? Some of my friends don’t even know what oncology is. And the stress. Why is it so hard to stop spinning about things, spinning about every little cough we get. One doctor told me that a lot of my health related issues are like ants on your kitchen counter. You need to clean up the spilled honey on the counter, not try to kill the ants. Clean up the honey and the ants go away. For some reason this visual clicked for me.
Posted on 
Posted on Jill:
I loved the ants on the counter/honey story…I clicks with me also!
Marty: Do you think the doc.s have some kind of cartel going on…I asked my Onc. doc to look at my left eye that was bloodshot last week and he said…you need to see an eye doc for that…Hey..didn’t he go to plain old med school? I’ve got a low wbc and the ONC office wants me to be extra cautious about infection but then….? WTF?
tmay brings up an interesting thought—you mention a concern to your doctor, only he can’t help you because it’s not his specialty? Come on, doc, at least take a look! I worked for an internist for 6 years. Believe me, in the medical/doctor circle, there’s a lot of mutual back-scratching going on! As if there aren’t enough patients for all of them—give me a break!
Martha
Thanks for your support - 
Lee—
I am choosing to live a normal life too. It’s working about 50% of the time right now. But that’s so much better than 5 or 6 months ago, when 100% of my time was spent living like a cancer patient. I continue to try to do better each day, and hope that one day I will make it 24 hours without thinking of cancer. Seems like a lofty goal right now, but not impossible.
Martha
Lofty goal, indeed. I’ve always used activity to hide from thoughts. My family knows it as “building shelves” (I have built quite a few poorly designed and executed shelves in our home – they all know what I’m doing). The two toughest times for me are when I’m in the park walking the dog and am reminded that is where I went to find my thoughts and now they find me; the other is when I sit down and the sources of pain cry out for attention. Though it is more a dare than a cry out.
I know that role all too well. Pretending to be ok. It does exhaust me though. I finally broke down today and asked for help. That was tough, I kinda felt like I was weak and a failure. But I know that isn’t true.
Lee:
I am also learning that I do have a choice. I can choose to be a poor me victim or I can choose to be “normal”. The times we forget that we have cancer are priceless. To be able to listen to a friend’s concern about their dogs allergies and raw food diet. Love those times, because we have BOTH forgotten about the cancer. We are normal for a while.
This cancer can turn a relatively normal person into a self absorbed blob. It is another way for it to control how we live our lives. But for all of us, isn’t the goal with all of the chemo, surgery, etc. is to live like we were before? I know that it is not possible to be exactly like we were with the knowledge we have now. But I want to be normal and for my loved ones to be normal around me.
Denial is great….if that doesn’t work, just taking one step at a time has worked for me. One more chemo, one more scan, one more day. Don’t ask me to think of the next, what if.
Thanks for your thoughts. You express yourself so well.
Tmay
What you write is so true. Fake it til you make it. The times when you have to force and pretend to be happy are so hard. And force myself to go for a hike in the woods because I know I will feel better. Who thought I would have to force myself to get outside and find joy, that this would not come naturally. But if I keep doing that (and other things) I start to feel normal again and happy and healthy. I have never wanted to be so normal in all my life. I strive to be normal.
The human mind is a wonderful powerful entity of which we know so little. It can accomplish much more than we realize if we keep an open mind. If you can find Helen Keller’s Autobiography to read you will learn more!
God does not let us take this journey alone. During my recovery from multiple heart bypass in 2005 a spiritual entity came to my room accompanied by great peace and infused the comforting thought directly into my brain that whatever happens until my passing (who knows when?....only God!)is for my benefit! This was not information i needed at the time as i was feeling fine during recovery but the fact that God felt I needed the spiritual contact as faith reinforcement was most important! It showed me I am never alone and God does care! That is the most positive concept I can share with anyone!
I cried reading your post and crying hurts my eyes after a treatment(which I just got yesterday) but everything you say is so true. I try to go just one day with out thinking about the C word, and some days are better than others, and some days I feel pretty normal, but some days (the first several after a chemo treatment) I get so depressed but I think its just how the chemo runs you down. I want my life back, I want to wake up and feel normal and pretty and do things. I can’t work, I can’t eat much, I just want to go back to working my 9 to 5 job as a social worker and come home every night. I want to go to the bathroom normally, I want to dance again. I want to cook meals for my family and not have them worrying about cooking for me. I am the first person on my side of my relation diagnosed with cancer. My husband, diagnosed with melanoma 8 years ago, was the 2nd on his side and he beat it. He was stage 1, I am stage 3 and scared to death. It’s one thing when a family has to go through this once, but twice? ore even some of us more? How can there not be a cure? how can we clone animals and not cure cancer?
I’m praying for you,
all of you,
hugs,
Amy