How I’m doing 2/2/2020

I write a lot about what’s going on in my head. A lot of folks who care about me want to know what is going on with me physically. Being the eye of they storm, I don’t always get a chance to update “everyone” personally. There are a lot of you and just one of me. I realize that a lot of family and friends end up relying on my ride or die crew to update them. I’m going to do a few random updates about my medical status so y’all can give Becky, Ali, Aunt Cathy, and especially Terry a day off.

This is just data. I am going to try to convey it as such. I’m saving my “good” writing for more thoughtful pieces.

The emotions that I have wrapped up in all of this information are really complicated. It’s only been a few weeks since I was properly diagnosed and my emotions are a roller coaster right now. It’s going to take years to process all of this trauma. If you plan on staying in my life saddle up. It’s going to be a wild ride. I’ll continue to write and document this experience. Sharing stories like mine can help folks understand medical trauma. They help us all with a little empathy. The world could use a little more of that these days.

Here I go.

I have stage 2 grade 3 invasive ductal carcinoma. My cancer is triple negative breast cancer. My tumor is in my armpit. That’s right. I have breast cancer in the breast tissue in my armpit. Thankfully my lymph nodes were clean on the ultrasound and I had one biopsied that looked “suspicious” and it was clean.

I have had a CT and a bone scan but no PET scan. I have asked for a PET scan. I’m terrified of unidentified mets floating around trying to land on my lungs and brain. My doctors told me anything I had (met wise - it’s super scary typing that FYI) would have shown up on these scans hopefully and insurance won’t cover a PET scan. Thanks, American health care system. The only thing worse than elected officials making health care policy is unelected insurance companies making health care policy. Fuck this broken system.

My bone scan showed a random benign tumor in my right arm. Apparently it’s cartilaginous and not cancer. I had an MRI to determine this. It’s random and one of the incidental findings of the breast cancer. The day they initially saw that random tumor was a dark and frightening day. I was so traumatized that I actually blacked out for part of the day. It was like being blacked out drunk in college except it was about 2pm and I had been drinking only coffee since 6am. It was also my 38th birthday.

I also had a breast MRI on my birthday. It showed a bunch of suspicious spots. They told me this would likely happen though, since I was breastfeeding. You can’t just “turn off” breastfeeding. Especially with a baby as young as Penny Lane. So it took some time and a head of cabbage for all of that tissue to settle back down. A week ago I had a MRI guided breast biopsy of these spots. One had gone away already and they biopsied the other one. They did this with a large drill that looked like a power tool from Home Depot. They told me it would not hurt. That was a lie. It hurt a lot.

They use lidocaine for biopsies and I am here to tell you that is straight up bullshit. I realize there is an opioid crisis but they didn’t even give me Tylenol after any biopsy. I had to score some Tylenol from the personal stash of a high school friend. And I was in a goddam cancer hospital. The breast biopsy was so painful that I went home and was in so much pain that I was subsequently sent to the ER. At the ER they finally did something about the pain. Bless that ER doctor.

So remember this. If you ever go to the hospital lidocaine is bullshit. Demand something stronger or prepare to be in pain.

The results of the breast biopsy were clean. I suspect they ended up sampling a group of nerves, which is why it felt like the biopsy site was going to absolutely explode.

I have been prescribed 16 chemo sessions. 4 AC which are every other Friday. Then I’ll have 12 weekly Taxols.

I tolerated the AC “red devil” chemo really well so far. Day one I am just tired and on a lot of medication. I can’t focus and I can’t read. My head hurts. Day two I am tired and I have terrible dry mouth and burned taste buds maybe some blurred vision, nausea, and headaches. Day three I still have dry mouth, nausea, headaches, and I get super tired by 3pm with some heavy joint and bone pain. I go home from work (it’s also Monday and remember I run my own business) and sleep on the couch. Day four is the hardest. The effects of the white blood cell booster Neulasta kick in and I feel like I have the flu. Everything hurts and I’m very tired. I usually leave work early and sleep. I am too tired and sore to hold Penny Lane. Sometimes it hurts too much even to sleep. I ran three miles once on day four. That was a giant mistake.

Day five I feel good again. I quit taking all the meds and I only am slightly nauseated and I have headaches. Marijuana helps a lot with the nausea and headaches. That’s right, marijuana. I have cancer, leave me alone. It’s the best goddam drug out there for headaches and nausea and it doesn’t compromise my liver.

Day six is pretty good. The headaches are light and the nausea is almost totally gone. Day seven is almost normal. By day eight I feel like myself.

Taxol is a totally different drug. So once I start that I may be fine or my fingernails may fall off. Everyone reacts differently. So I’m nervous for the change.

Am I BRCA? I was tested for a host of genetic mutations. I don’t know my genetic results yet but I will share that with my family before I make it public. I’m nervous. I’m worried for my kids. Especially my girls.

I have a consult with radiation this week. I am really hoping to avoid radiation because I don’t have lymph node involvement but we won’t know that for sure until I get pathology back after my surgery. I have heard that you either wake up from surgery with implants or expanders based on what they find. That sounds like an pretty rough day. (Also, breast reconstruction after breast cancer is not the same as getting implants. I might joke about getting new boobs but please remember: I have been through hell, I’m absolutely terrified, and none of this was my choice.)

Surgery. This is hard. I’m going to be disfigured for life. I have had surgery before and it’s not fun. This time I’m not having an internal tweak, I’m having a natural part of my body amputated. I have made the decision to have a double mastectomy regardless of the recommendation from oncology and surgery. No amount of medical science will ever make me comfortable with my breasts again. I don’t want any of this but I sure as hell don’t want to do it again.

I have another AC chemo coming up on Friday. I have been warned that every chemo gets harder and that the effects are cumulative. They’re definitely not fun but I’m getting through them.

A fellow survivor told me that the only way out is through. So I’ll drink a pot of coffee, do a little online shopping, pull myself together, and head directly through it.

Stay tuned.