girl at large

All The Screaming In My Head

"You can beat this."

    No, I can’t. Nothing I do will change how the cancer acts or how I respond to the treatment. 

"You're so strong."

    No, I'm not. I'm just silent. If I gave voice to what I really feel, I'd physically and mentally crumble and I can't afford that. It's not strength, it's just lack of a safe space to be as weak as I actually am. 

Related: "You'll keep fighting."

    What? What is fighting? I do the treatment, I suffer and I wait. There is no fighting. Nothing I do or don't do has any effect on the cancer. It's all just suffering. And at some point, there will come a time when I can't "fight". What then, am I a loser? There may come a time when I refuse more treatment. For the love of god, when I quit "fighting" respect me. Every day, someone in one of my support groups dies. They "fought" the same as me. Cancer doesn't fucking care.

"You have so much to live for."

    NO FUCKING SHIT. We all do. I'm 100% aware of how much I love my children and how much they need a mother. That love has zero effect on my ability to be cured of cancer or how much I can tolerate the suffering of treatment. This is the cruelest "well meaning" thing people say to me. It's also sexist. I wonder how many sick fathers get this same platitude. Also, I WANT TO LIVE FOR MYSELF. Big secret---kids are not the first thing a critically ill person may think of. It may be, as it is for me, themselves. I want to live not for my kids, not because of my kids, but for ME to enjoy my kids. But first, I want to live for myself, as a whole person separate from being a parent. I am more than a vessel for my children. 

"It could be worse."

    Could it? What flavor of dying is better? Yes, there are versions of my cancer, of all illnesses, that are "worse" or where treatment is more debilitating. But it's all dying. It's all suffering. It's all terrifying.

"At least they caught it now."

    Yes, catching it now is so much better they say. Better than what? I would rather not know. Because knowing now is still only knowing the risk, the ax over my head, the doom. Not knowing was freedom. And no one knows, or at least they won't tell me, if finding the spread now truly improves my outlook. Because all we really learned is that it's still lurking, and the scans can't see it. So, it just confirmed that I'm a walking game of pop-goes-the-weasel. It's gonna get me, and I have no idea when or where. 

Today my therapist advised sitting with the emotions, all of them, that are here and that will come. She also approved all the ice cream.

At The Speed of Cell Division

Well, that was fast. 

I had a clear PET scan on August 24th, just a day before my prophylactic hysterectomy surgery. A week after surgery, when meeting to review my medication switch, my oncologist reviewed the scan results and used the word “remission”. It was the first time I felt truly hopeful and relaxed. I even asked awkward Dr Puffer for a hug and he obliged with a smile. I’m not a hugger, he’s not a smiler. It was a great day.

 

Paulie said, and thus cursed us, as we drove down the familiar hospital drive, “Well,we won’t have to be back here for a long time!”

The total hysterectomy surgery had gone well, no complications and manageable pain. In my mind it was the last step, the last hurdle, in my treatment. I had decided some time ago that I wanted to have all potential cancer bags removed at some point, but the Lynch Syndrome genetic diagnosis made that an imperative. Lynch Syndrome raises my risk of uterine cancer by 60%. Medication (Tamoxifen) can suppress estrogen, which fueled my cancer, but ovary removal and a different medication (Aremidex) is even better. So, bye bye cancer bags. 

The past three weeks since surgery I’ve been resting and adjusting to the new anti-estrogen medication (called AIs or aromatase inhibitors). Basically, life without hormones. Not a huge sacrifice, and I felt fortunate to have the option. Feeling pretty good, like I crossed a finish line.

 

So…about that other shoe.

 

On Monday, the test results from the hysterectomy pathology came back. There were breast cancer cells in my ovaries. 

 

That means the cancer spread beyond the “region” and did not have a complete response to the Chemolite™️. Though it’s not back to square one, it’s a set back, and completely unexpected. This is quite a rare occurrence. In Dr Puffer’s words “I couldn’t believe what I was seeing on the screen. I really don’t know what to say.”

 

And I don’t know what to feel. I was so excited and free, I didn’t even write that celebration blog yet. 

I’ve said before that the first thing cancer does is take over your schedule. So, I’m in a familiar place again, the hospital and lots of tests. Yesterday an ECHO to test my heart again, and more blood work. Next week is a brain MRI and a bone density scan. All in preparation for beginning an oral chemo regime (Lapatinib). It’s not as rough as full on IV chemo and hopefully I tolerate it as well as I did the Chemolite™️.

 

It may not be as rough but it sure feels like a major blow.

Life and Photosynthesis

Mom: “I finally figured it out! I finally realized why you got so into plants!”

Me, and all my house plants around me in the corners, listening.

Mom, enthusiastically: ”You were desperate to keep SOMETHING alive!”

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Me: “You mean I was interested in being surrounded by living things?”

Mom: “Oh, yes, that does sound better.”