Starting at about age 38, I had my first mammogram. I had one each year and to be truthful I was a little proud of myself. It seemed that getting a mammogram was something that a lot of women put off, but I stepped up and got her done.
When I was 40 I had my third one. Scan results are rated on a scale of 1 to 5. 1 being all clear, “no evidence of cancer” and 5 meaning you’ve got big problems. Each mammogram scan result came back the same, no change, and I was rated a 1, no evidence of cancer. Whew!
Later I was told that I had probably had cancer for 6-8 years based on the size of my tumor.. and when they went back to look at my previous mammograms, it was casually mentioned that, “now that they knew what and where they were looking they could see the tumor”.
Was this really happening to me? Next thing you know my husband and I are research maniacs as we desperately learned as much as we could about my disease and treatment options. I am facing surgery, chemotherapy, radiation and hormone therapy and after all that my 5 year survival statistic was only 61%. Grim.
Everything happened so fast and I was so overwhelmed. The wonderful thing about cell phones is that you don’t miss any important calls, the downside, is going through the u-scan at Kroger and getting a call from your doctor, not exactly a setting conducive to processing traumatic information. I thank God everyday for my husband. My brain would seem to go into panic mode and I simply couldn’t process information or ask any seemingly obvious questions. I literally, if he was there, would hand the phone over, otherwise neither of us would know what was going on.
Through this whirlwind, not a single doctor asked me how I was doing, what I thought, how I was coping, or most importantly what I wanted to do in regards to treatment. I didn’t feel like I was part of my treatment, it was just something that was going to happen to me. Like a good little soldier I would do as my doctors said, and sit down in that chair and board the chemo-conveyor belt. But something was wrong. This all felt wrong. My instincts were screaming at me that this treatment was going to kill me. How can I start a treatment with the belief that it was going to kill me?
So I made the decision, after I had surgery I refused Chemotherapy, Radiation and Hormone Therapy. This was the hardest, most stressful, BIGGEST decision of my life.
Deciding not to follow conventional cancer treatment was one thing. Deciding what I was going to do instead…. something else completely. Neither were simple matters, after all, my life was on the line.
My family was terrified and I was feeling pressured to follow the doctor’s orders. I get it, they love me and they are scared that I’m going to die. Scared that I’m making the wrong choice. I get it, I was terrified too.
I remember thinking that it would all be so much easier if I just complied. Just do the chemo and be a good girl. But I was already skeptical. I had already trusted conventional medicine with the mammograms… and no one caught the cancer until I did, and by that time I was stage 3. Now all the treatment options they were recommending had known side effects of “causing cancer”. It sounded like a round robin to me – We’re going to try and get rid of your cancer by prescribing a treatment that may cause you cancer. Say what? How about a cancer treatment that does not have a probability of causing the disease that you are trying to get rid of?
I was broken. Broken physically, broken emotionally. I was going to die. We had recently leased a car, a short 3 year lease. I recall driving home one day and realizing that this short term leased vehicle may be a part of my family longer than I was.
I was heart broken. My family didn’t deserve this.
My two teenage girls deserved to have their mom around… for a long time. My husband, married a dud. This isn’t the way it was supposed to be, he married the wrong person, made a bad choice. This wasn’t the life that we had planned or worked so hard to create. I was grieving for myself and I was grieving for them, sad that any of my loved ones would be subjected to the pain of losing me.
Some people would try and comfort me and make the argument that death was not something to be feared, because we are all going to die. I realized that there seems to be a badge of courage saying, “I’m not afraid of dying”. This would irritate me, because I felt like I wasn’t evolved or mature by being afraid of dying. I think our primitive brains are programmed to be afraid of dying, and I mean we have deep subconscious programming to stay alive, but I was more grieving all that I wouldn’t get to do, experience and being part of my family. I wasn’t ready to go. I was grieving the future I felt that I was not going to have, I was grieving the loss of a relationship that my children wouldn’t have with me, I was grieving my husband losing the love of his life. My husband told me last week, “if something happens to you, I don’t want to get remarried. I have the very best right now and nothing could compare, so I’d just rather hang on to that for the rest of my life”. Just typing this makes me tear up now.
My parents were leaving town, and they wanted me to do Chemo, etc… and I had made it clear that I didn’t want to go that route. There was an 800lb gorilla in the room, no one wanted to bring it up or talk about it.. but it was so heavy, so palatable that it made it difficult to talk about anything at all. I sat in the living at their house, my mom in the chair beside me with the tv on. All of a sudden, I went over to my mom’s chair, got down on my knees, put my head in her lap and we both cried. My dad came in and we all cried together. I realized later that I was in a childlike way going to my mom and dad so that they would make it better. This I think was a traumatic experience for all of us, because although it wasn’t spoken, each of us knew at that moment they couldn’t fix this. I also realized there is something worse than having cancer, what was worse was being the parent, spouse, or caregiver of someone that you love that has cancer. I can’t imagine a greater torment than experiencing the helplessness of not being able to fix, save, rescue, a love one. I had to grieve this as well, I was the cause of their anguish and there was nothing I could do, it seemed out of my control.
So there I was, I had turned down Chemo, my doctors were a bit hostile about it, and I had to figure out what I was going to do next.
Once you’ve made this choice, it is very unnerving when people try to talk you out of it. Telling stories of others that did something similar and now they are dead. (Like no one ever dies anyway after having chemo) I understand where they are coming from, it is out of fear and love, but it sucked and caused more anxiety for my husband and I than just about anything else. It didn’t take too long to know doubt was a luxury, and those who tried to persuade us to do what they felt was best was a relationship that we had to distance ourselves from.
Because of this, I am incredibly respectful of everyone’s own choices in regards to their care and treatment. No one should get to decide for you. You have to make this decision and it has to be what resonates with you. I have no judgement, and it is my hope that others can extend this back to me in regards to my choices. This is our most basic right, to choose how to live and how to die, and everything in between.
My journey has been intense. My journey has been necessary. I wouldn’t want to do any of it again, but I can also tell you that I wouldn’t undo any of it. This has been the best year of my life and I know that they are only going to get better from here.
My passion is to bring my story forward to share my experience, my treatment, and the techniques I have developed to deal with the fear and anxiety that results as part of receiving a traumatic diagnosis. I quickly realized that every time my stress response was triggered, which was just about all the time when you think you are going to die, my immune system was being slowed down at the time when I needed it the most. My healing and chances of having a healthy future were being compromised. My passion is to share these techniques through providing one on one coaching, group coaching, speaking engagements and through my book Tit and a Half, my journey back to health.
No one has a crystal ball – and there are no guarantees in life, or with any treatment approach. Regret and doubt are not helpful. You know that I can’t tell you that it is going to be ok, but in a way it always is. Just take a deep breathe and relax, and please know that you are not alone.
Are you ready to get your future back?