My mind is frozen mush. I am numb. For most of my life I pushed to excel in school, to survive Lyme disease, to raise my daughters all while working full time. I can’t push anymore. I am still healing from surgery and the reaction I had to one of the dyes. I can now wear real clothes 8 hours a day and then the bra MUST come off. I’ll take that little victory. I dyed my hair fuchsia with a bubblegum streak. I can’t find the embroidery scissors I had in my hand 15 minutes ago. It’s June 3rd and so cold the furnace kicked on this morning. The retired pharmacist keeps reminding me that grief is not linear and that at only 4 weeks after surgery not everything has healed (I can feel the keloid tissue under the skin). I told patients that for years. Not only is grief not linear, the stages circle back more than once until they are processed and put away.
There have been more decisions to make. I met with the Radiation Oncologist and the Medical Oncologist. The Radiation Oncologist reminded me of the absent minded professor. Very tall, he walks bent over and shuffles. He’s brilliant and ordered my pathology slides to be sent to another hospital for a second opinion. I didn’t know this until the pathology report popped up in my email. The nurse who interviewed me asked for a full family history and then the doctor gave his talk about standard treatment and the risks and benefit of radiation. He handed me a copy of the NCCN* Guidelines for the treatment of invasive breast cancer. We took a stroll to his office where he put my information into a program developed by the Memorial Sloan Kettering Cancer Center which showed that having radiation would increase my chances of living for 5 years by only 0.7%. My reaction was that I had to go home and think about this. Then I went up to the Medical Oncologist’s office to talk about hormone blockers. Because I initially made appointments backwards (saw the Medical Oncologist before the Surgeon). I already knew chemotherapy was out. NCCN Guidelines for women with Stage 1 who are over the age of 70 state that the risks far outweigh the benefits. The choice now was between tamoxifen and an aromatase inhibitor which stops estrogen production. Both have side effects, I chose letrozole, one of the AI’s.
After looking at all the information I was given and reading the new pathology report, I decided against radiation. The new report was more detailed; my cancer never infiltrated anything (it stayed in the milk duct) and while the cells didn’t look “normalish” they weren’t crazy “eat me alive” cancer cells either. The mitotic rate was 1 – kind of “do I have to get out of bed and do stuff?” With radiation there was 100% chance of side effects and a very tiny chance of benefit. I just said “No!” I haven’t had severe, unmanageable side effects from the letrozole. It did whack out my glucose processing. The bedtime Lantus dose went up and I now have to cover most of my meals with short acting insulin where it was occasional use before. At least my weight has stabilized. My brain is getting used to operating with less estrogen and our brains use estrogen a lot.
It has taken weeks to finish this because I am tired of being “sick”. Every night when I take my hormone blocker, I am reminded that I had cancer. This is one of the most important reasons patients with any chronic condition are non-compliant. It is very difficult to emotionally deal with daily reminders that we are not normal, well human beings. It upsets our sense of self. There usually comes a time when we believe we will die if we put one more of these stupid tablets in the mouth and swallow it. My patients and I used to deal with this on a weekly basis. This is especially difficult if the condition does not make itself felt on a daily basis – like high blood pressure, coronary artery disease or cancer that has been dealt with, but has a risk of coming back. Most medical professionals don’t understand the emotions of non-compliance, they think we are arbitrary or lazy, until they are the patient and then they get it. Tomorrow will get easier. I will survive.
*NCCN stands for National Comprehensive Cancer Network. It is a network of 28 top cancer research and treatment hospitals in the United States. It sets the standard of care for the treatment of cancers.