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new normal

on managing expectations

This chemo journey has been easier than I feared but harder than I expected. Any one moment is manageable. A day is doable. It is the fact that it doesn’t end that makes it difficult.

Six months ago, if I had woken up feeling like I do today, I would have said (on a scale of 1 to 10 of feeling badly) that it was a six and I should stay in bed. Drink lots of water, rest and listen to my body.

But my body is screaming at me in ALL CAPS and it never ends.

Today, I’m thinking that it feels like a two or three and I need to get up and do as much as possible before it gets worse.

I am still in the process of recalibrating my baseline and defining what feeling ‘good’ means for me right now. I have nineteen more treatments before surgery and another six months (at least) of radiation and immunotherapy after that. So, I’m not even halfway to the halfway point.

There have been a few tears this week, as I’ve been overwhelmed with the fatigue and stress and fear of the future. Honestly, I’m not even worried about my health or treatment or the possibility of dying. It is the constant worry of daily life. How am I going to pay the electric bill when I can’t even get out of bed to work? How am I going to mop the floor when I can’t even manage sweeping up? What about the dishes? The laundry? Holidays and birthdays are coming up and I don’t have the energy or money to plan parties or cook family dinners.

A bit of good news this week is that I was able to get my CT scans and the bone scan. Everything came back clear, which is fantastic news. The tech for my bone scan told me that my pelvis had been broken at some point, which was news to me. It was very interesting to look at the pictures and not have any idea how an injury like that happened. A mystery!

Since chemo is on Mondays, the weekends have been the days when I feel the best. My goal this weekend is to be grateful and make the most of these two days without overdoing it. I’ll do a little work, a little cleaning… focus my mind and calm my soul.

This too shall pass.

The Beginning

It started in the summer. Not the cancer, I didn’t know anything about it then. But my health had been worsening for some time. The arthritis was getting worse and various autoimmune issues kept me in near constant pain. My weight had crept up to almost 260 and I felt terrible. It was a vicious cycle – I would drink sodas and eat sweets for a quick rush of energy to get through work and then crash. I tried to diet, but cutting out soda was too difficult. Finally, in August I reached a tipping point. Something had to change.

My rheumatologist put me on Methotrexate, a drug to suppress my immune system. He warned me that I may have some flu-like symptoms. I decided to quit sugar (including soda!) cold turkey and deal with the withdrawal at the same time. To my surprise, it worked. My pain decreased, and for the first time in years I was able to move easily. The weight started falling off.

In October, I noticed a lump in my right breast. My first thought was that it was easier to feel because of the weight loss, but I wasn’t overly concerned about it. I had a lump that required a biopsy in 2017 and it was benign. I called my doctor and asked for a referral for a mammogram. I have very dense breasts, so it isn’t unusual for me to have a follow up ultrasound. She ordered a diagnostic mammogram and ultrasound for the following week. They showed a 2cm mass at 11 0’clock, so she ordered a biopsy. The surgeon didn’t have an appointment until December 9, but she didn’t want to wait. I finally got in on November 14th.

The results showed invasive breast cancer – grade 3, triple negative with high Ki-67. Our main concern right now is whether it has spread. This type of breast cancer is aggressive. Unfortunately, my insurance company denied requests from the doctor for tests (CT for chest, abdomen and bone scans). Although I have filed an appeal, the doctor thinks it is unwise to put off the treatment.

And so, here we are. I’m looking at a year of treatment. Six months of chemotherapy and immunotherapy, surgery and then another six months of treatment. Radiation and possibly more chemo/immunotherapy depending on the success of surgery.

I have an appointment in a few hours to go over the plan with my oncologist and then my first treatment directly after that. The worst part, for me, is not knowing what to expect. Being informed and prepared is (usually) my superpower. This whole process has been humbling, for sure.