How I’m doing 2/20/2020

The medical (ish) update for all of you as I head into my fourth and final round of AC chemo. There’s no new information from a diagnostic or genetic standpoint. It’s just the trenches of treatment for now.

Friday 2/21/2020 I have my last AC chemo. On 3/6/2020 I begin having taxol chemo every Friday for 12 weeks. The chemo drugs are different. AC is two old school cancer drugs that are often considered the front line of chemo for breast cancer patients. Since my breast cancer is triple negative (AKA rare and aggressive), it’s the gold standard for non metastatic patients. It’s so hard on your body that there is a life “max” amount that you can receive. If you get too much it can irreversibly damage your heart.

Fun times.

I felt pretty good after the first two rounds. I thought that I could rely on this to predict that I could feel pretty good again by the fifth day after treatment. Then I had the third round.

Think again.

I was warned that the nasty effects of chemo are cumulative. Each one gets a little harder on the body. I thought that if I drank enough water and exercised I could keep the side effects at bay. I thought if I could be a “good enough” patient that I could control how I felt and reacted. Nope.

I don’t know if it was the norovirus that my kids brought home from public school (a heart felt thank you to the parent that sent their contagious AF child back to school) or just the third chemo adding up but this one knocked me on my ass for a long time. I have scarcely been able to eat a meal in about two weeks. My weight is dropping and my hair is thinning and when I look in the mirror these days I look more and more like the cancer patient I feared I would become.

I have had to go to the ER and the cancer center to have fluids a couple of times due to dehydration. A couple extra blood draws were ordered but there isn’t anything big going on except that I have felt so sick that I could barely manage coffee. There were some days that the mere smell or thought nauseated me. COFFEE. ME. That’s how you know I was feeling badly.

So yeah. It sucks.

Thankfully I had some extra help on my hands the past ten days. Aunt Cathy was here helping us with baby Penny (and slinging zingers) and my brother and sister were helping with my big kids while my folks took a little “senior spring break” to Florida. I honestly don’t know if Terry would have survived without Aunt Cathy because I am not a co-equal partner in this marriage when I’m asleep on the couch.

Having Aunt Cathy was an obvious delight for me because she is one of my favorite people. She’s probably met more oncologists than one would encounter at an oncologist’s conference and now she’s met mine too. I learned how to face cancer from her and from my cousin Marty (her son) and it’s wonderful and terrible to have these experiences to draw from now. My siblings are my original best friends and every time I’m with them I am grateful that my parents loved me so much that they gave me two humans as weird as myself to share life with.

Having cancer young is a crummy experience, but having friends and family eases the burden.

Everyone has gone home and tomorrow is another day at the cancer hospital. The idea of heading back in for one AC is moderately terrifying at this point. I get queasy just thinking about those cold caps. But without them I’d be totally bald by now and at least I can still manage to look decent at work. Folks just assume I’m tired from having a baby. If they only knew.

My hair.

My hair was getting pretty thin and Penny Lane was starting to grab my hair and pull even more out (horrifying) and it was always getting tangled in her chubby little hands so one night recently I decided to cut it a little. A little before midnight fueled by the kind of courage that only a Guiness could provide I gave myself a long bob with scissors that I bought on Amazon. Don’t worry - I had an appointment at the salon to have them finish it off and make it into a “real” hair cut.

I love having long hair so this was a traumatic night. I can’t imagine what it feels like to actually shave your head because I indulged in a fair amount of sobbing after my haircut. My “sisters” that go bald are so incredibly strong. Please remember that when you see them.

The whole experience is overwhelming and surreal. I just keep thinking about early in December, weeks before I was diagnosed. I looked at Terry one night and told him that I had never been happier in my life. Our careers were finally firmly settled and we were finally starting to enjoy our success, we had two great big kids and a sweet new baby, and we were finally investing in some family travel, a luxury we had put off for years during “the climb” of the last decade and half. Everything was absolutely perfect in our lives. It all just came crashing down so quickly with this diagnosis. I’m still completely heart broken about all of it.

So how am I doing mentally?

This is a much more complicated question. It seems like when I’m physically sick the mental aspect is easier. I’m so focused on getting regular daily tasks done and trying to eat that I don’t have the energy for my anxiety.

But the dark stuff creeps in. There are a million questions I have and they’re all really centered around survival. Everyone keeps telling me I’m going to “beat this” and “I’ve got this” and nice positive stuff. Which I appreciate, don’t get me wrong.

But sometimes I can’t help but think about: what if I don’t. I mean, I’m obviously going to make it through treatment. Sure. I’m going to have surgery. But how well will all the chemo work? When I look at survival statistics I can’t help but think about the fact that someone has to be on the other side. The side I can scarcely even say or type.

Triple negative breast cancer is one without a hormone therapy or targeted treatment. It’s just old fashioned chemo and radiation. Most of the time this wipes out all of the cancer cells and there is no reoccurrence. But sometimes it doesn’t. If it reoccurs, it is likely to come back quickly (36 months or less) and metastasize somewhere awful like the lungs or the brain.

I have three little kids and this is some mental fuckery.

And please. If you have not been through cancer, do not try to give me advice on how to deal with it. You just don’t get it. Consider yourself lucky and do me the small favor of keeping your mouth shut. If you’re thinking therapy is the answer you won’t be the first person to make the suggestion, but I wouldn’t place any stock in a therapist who had not been through cancer. It’s like taking parenting advice from a non-parent. Just, no.

I am trying to “stay positive” although I am beginning to loathe the phrase. I feel like I have to be positive for everyone else and then I’m left to think about the scary parts of this on my own. As Americans we are trained to put a giant smile on our faces and push through strife. I am trying. Really trying. But the notion “staying positive” vastly oversimplifies this pure hell.

I was blindsided by this cancer diagnosis and I live in fear of being blindsided again. I was positive before. Gleeful. Elated. The happiest I have ever been. Being positive didn’t save me then and it won’t save me again.

I expect a positive outcome. I expect a positive future. I just can’t always be positive for all of you.

I do have some positive news however: next week I’m taking a cancer trip! I’m braving coronavirus and flu outbreaks to get myself a mental break. My oncologist said it’s okay and she is the boss. So there. Cancer trip pics to follow.