The Freak-Out Explanation and Update

So, after three weeks of freaking out, not sleeping, crying all the time, feeling the cold hard edge of panic just a breath away from absolutely slicing me open, I went to an appointment to meet my oncologist. I had thought this was to discuss genetic testing, possibly get blood drawn for that, and to discuss the medication I’d be going on after my surgery.

What happened was that I found out things had been done backwards.

It’s not that I got good news, it’s that I got the news I should have gotten before having the meeting with the surgeon and nurse when I was given two choices: lumpectomy with radiation, bilateral mastectomy. Instead of my radical choice, I’ve been put on tamoxifen for the time being, I will get genetic testing sometime in the next few weeks, and after getting the results I will have lots of time to decide what to do next. The tamoxifen will keep any cancer from progressing and that gives me time. I did not have this exact information before.

It’s been hard to disseminate this information among my friends. I’m so tired and worn out and I just don’t want to talk about it anymore. But I realized after a few people had seemed relieved at this bit of a reprieve, and then said almost as an aside that my initial course of action seemed kind of rash, that that initial decision had not been not received in the proper context. It may be that I will never be able to convey that context, but I thought I should try. I want to be understood, and I want people in my position to be understood. There really is logic behind the freak-out, and I almost feel like some of the comments about my rashness are a bit of a negative commentary on my character.

When I was seven years old, my mother was diagnosed with breast cancer. I remember the trip to the doctor. My brother and I stayed in the car while our parents went in to the office. It was just about 1980 and kids could stay in the car unattended for an hour while no one batted an eyelash. The one very clear memory I had was of my mother walking out of the office on her way back to the car, leaning on my father, crying her eyes out. She was to have a mastectomy right away. Chemo would come. Radiation would come. My mother, being very conscientious, had me feel the lump she had found before surgery so I’d know what to look for when I grew up. It was about the size of a pea and hard.

The next two years were awful, and I can’t even imagine what it was like for my mother. She went through several rounds of chemotherapy, and a few rounds of radiation. Her right breast had been removed, the lymphnodes removed, and that side of her had been radiated so much that her skin had turned black and blistery. Her hair fell out. She vomited more often than she ate. She slept on the couch all the time, and tried hard not to take the morphine she’d been prescribed because it made her hallucinate. There were special heating pads my father would prepare for her by dropping them in boiling water and then, fishing them out of the pot again, wrapping them in towels to lay on her chest and arm.

She lost weight, became gaunt and slightly yellow, and she smelled different. I realized years later that she smelled sick. I don’t remember her crying as much as you’d expect, and she tried hard to be a good mother to my brother and me even though she could barely get up off the couch.

The cancer spread. I learned the word “metastasized” when I was 8 years old. She would spend a couple of weeks in the hospital at a time. Sometimes a month. She died there in the wee hours of the morning, and her mother, our grandmother who was staying with us at the time, took the phone call. Grandma told my brother and me later that morning when we woke up. It was a Saturday and it was June 5, 1982, and my mother had just turned 42 three weeks earlier.

I was nine years old. I have been worrying about breast cancer for almost exactly 37 years. Since then, I’ve kept my eyes open for scientific articles about cancer, I’ve tried to eat right and exercise, I’ve avoided things that might cause cancer, I’ve just assumed that I would reach about 42 years of age and then my number would be up. I know medicine is much different now – intellectually, I know this. I have read about it, I have read the clinical trial information that had been translated for filing the trial results with the FDA at my last job* (it was for this study), PET scans are a thing now, genes have been found, genomes have been sequenced…but when you’re 7 and you watch the most important person in your life literally wither and die because of a thing called cancer, it changes you on a level that stays with you always. I can’t imagine a different life, and I know people who have not experienced this cannot understand mine. So when I was told I had cancer, and days later was whisked into a conference room with a surgeon, and a nurse, and I was given a choice of what to do with the information I had, there was no amount of “but medicine has come such a long way, you’re not going to die” that was going to quiet the crying, worrying child inside of me. Instantly, I wanted to get that cancer out and all possibility of it ever coming back, so of course I chose bilateral mastectomy. It was visions of my mother’s blackened chest, her sickly smell, and her death that rose up in me when I was told I had to make a choice.

I am not freaking out as much now. The words have lost some of their power as I’ve gotten used to them, and the oncologist’s information was what I needed. I may still get a bilateral mastectomy, or I may just opt for the lumpectomy. I don’t know yet. Either way, I’m on tamoxifen for at least 5 years. I am so tired, and still so sad, and so worried. In between, I am packing to move, and I’m trying so hard to not worry about everything else.

Thank you, dear readers, for trying to understand. I promise to write more about things I am making.

 

 

 

* Although I had read in depth about tamoxifen at that job, I did not fully understand what it did. While I may have read the patient information leaflet original and translation, I sort of think I only read the prescribing information in the clinical trial data, and the treatment results. If you think that’s relevant information for when you get cancer, I invite you to read the doctor information leaflet for ibuprofen that contains all the side effect and adverse event information, and all the statistics – I guarantee you’ll never take it again, especially if you’re not a statistician. And you won’t remember what ibuprofen is actually for because you’ll be focused on terms like “coffee grounds vomit” and “liver failure”.

2 thoughts on “The Freak-Out Explanation and Update

  1. camilla marshall says:

    kate i am so sorry for what you are going through but the info i read was great you are a strong person and will over come this so take care, my friend,

    Like

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