Kicking Cancer’s Ass: The Waiting

Ever have an ear worm - one of those songs you just can’t get out of your head? I’ve had one for a few days. And it started when I walked out of my doctor’s office last Thursday.

I got to meet with my medical oncologist and radiation oncologist finally last week. My medical practices gets you through surgery before you meet with oncology (except in certain types of Breast Cancer, like ‘triple negative’ or HER2+ where chemo may be necessary first). First, my medical group had a complete system outage and we got to do doctor’s visits old school - paper and pen, baby!

My medical oncologist wants one more test before we finalize my treatment plan: the oncotype test. The oncotype of the cancer will indicate how likely it is to return, and if there is a high likelihood then chemo will be part of the plan.

Cancer treatment can vary, some of extremely difficult - exhausting, sickening, burning. Skin and the breast may never be the same. But from diagnosis to remission/cure/whatever is also filled with waiting. Waiting for the next appointment to be available. Waiting for test results. Waiting for a treatment plan. Waiting for treatment to start. Waiting for the surgery center to call. Waiting to talk to the doctor and understand what the test results mean. The Waiting. Tom Petty has been on constant repeat in my brain for the last 5 days.

Waiting, for me, is very hard. When I have an answer, I want to move forward. When I can plan ahead, I want to run as many things concurrently and efficiently as possible, and just get it done.

Waiting may not truly be the hardest part. But waiting fucking sucks.

The oncotype test will take 2-3 weeks. The test is run on the the specimen from my biopsy. Which was in March. Could this have been done already? Yep! Why wasn’t it? Don’t know, but I suspect the process is driven my insurance decisions. Can I start moving through the radiation processes, which has weeks of lead time built into it also? Not usually. My radiation oncologist is allowing me to plan appointments at least before the oncotype comes back because we had a family vacation planned in September before we understood how long this would all take.

I hate waiting, in general. Waiting while you know that have a disease that you have watched kill your family is simply unnerving. Do I logically think that my non-aggressive cancer is spreading at the speed of light while I wait for a test result? No. But does it still keep me up at night. Yup.

I have really stayed positive in this fight. There are dark moments and bad days, but for me personally if I can’t stay positive and hopeful, I know it will make it harder for me physically and mentally. But the waiting really starts to eat at me. It is so frustrating why this whole process has to be inefficient and drawn out. I don’t blame my medical group necessarily, or simply insurance, or any one thing. But collectively, all these factors seem work together to make this an exercise in waiting and worry. It shouldn’t be like this. Having and fighting cancer should be all I and every other survivor should be focused on. The weight that comes with waiting should not exist.

OK. I am done ranting and will get down off my soapbox. I don’t know how to fix this, I feel fairly powerless about it as well. But anyone else going through this battle should know to expect this and think about how they personally can manage it. It’s not easy or fun, and it takes work to overcome the frustration. But the waiting CAN, at times, be the hardest part.

Thanks for hanging with me for this rant.