The Numbers Game

This past Valentine’s Day I spent the entire day at Memorial Sloan Kettering in NYC (my home away from home) and had a battery of tests, scans and doctor appointments. It was my 6 month cancerversary and it was time to see if the hormone therapy I was on was working. My Doctor was pretty sure it was since my labs were looking good and the tumor marker numbers had been consistently been going down. To say it was a high stress day was putting it mildly. I wouldn’t know the results of all the tests and scans until the end of the day and I wanted to know now.

First I had a Mammogram and ultrasound to see if the tumors in my breasts had changed. I was not impressed with my tech. She had zero bedside manner. I understand she sees a lot of women but is it too much to ask that she at least be NICE?? My PET/CT scan was next. I couldn’t help but have flash backs to my first PET. Knowing you have cancer but unsure what kind of where it was coming from was the worst. Those feelings of terror and helplessness came flooding back. I tried to stay positive and concentrate on the fact that my numbers were good. This had to be a good sign.

After the PET/CT we had a break and my husband and I had lunch at the restaurant on the corner. We kept our conversation light and positive knowing that in a few hours we would be meeting with my Oncologist.

Blood work was next and then we were in the room waiting for Dr. Modi. When she finally came in I wanted to jump out of my skin. Part of me didn’t want to know but she had the paperwork in her hand and she began telling us although the final report wasn’t back she had a partial read:  No Evidence of Disease. I immediately broke down in tears. I couldn’t believe the meds worked. My doctor was very pleased and we talked about how the hormone therapy would be what I would stay on for now. My husband was so happy. He told me he wasn’t surprised I had good news but I could see the relief in his face.

After my emotions calmed down the questions began: How long will this medicine work? What happens when it stops working? Will chemo be next? As happy as I was I still felt as though I had a cloud over my head. After all, at some point the cancer will figure out how to get around the meds and will start invading my bones again or worse. It’s like telling someone getting a cast off their leg that they can run and jump again but sooner or later their leg will break again. It’s a strange limbo to be in. My Oncologist explained that they would monitor me by the blood work. If at any point the blood work changed they would move on to scans. So now, it’s all about the numbers.

In April, I began experiencing severe pain in my ribs and chest. I spent 5 days in the Wilmont Cancer Center where they ran test after test to figure out where the pain was coming from. I was on massive doses of dilauded that I pumped every 30 minutes. Their first thought was that I had new metastases but all the tests were normal. I was referred to Palliative care for pain management.

I have my blood drawn every month where I live so my doctors can monitor my numbers and also when I’m in NYC. In May one of the tests came back higher than the previous months. It threw me for a loop. Did my meds stop working already?  Was the cancer coming back? Although I wasn’t out of range yet I was a the tippy top of it. Any higher and I’m outside the normal range.  I’d have to wait another month to know for sure. When I told my Oncologist about the blood work at my next appointment she had me schedule a PET scan for July. Great.

Much to my dismay the pain I had in April returned and it hasn’t gone away. I’m on a different pain med but no matter what I take it’s still there. Monday I go for my monthly blood work. I’m very anxious about it because I’m sure of what the results will show. It’s a gut feeling I wish wasn’t there. Along with the constant pain that fluctuates between manageable and wanting to hurt someone most of the side effects of the hormone drug I’m on are gone. This is another reason I’m sure there is a problem. At least when I had the side effects I knew the meds were working. Now I’m not so sure anymore.

My hope right now is that the numbers aren’t as high as I fear they will be. And when I get back from our family vacation I’ll have the PET scan and find what I’m facing. Until then I’m going to do my best to stay positive, enjoy our upcoming vacation and make as many memories as I can with my family.

One thought on “The Numbers Game

  1. myobt June 6, 2014 / 8:22 pm

    How awful for you. Sending you good thoughts and good luck.

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