what a difference a day makes

Tuesday
Wednesday

Monday I had my fourth treatment – chemotherapy and immunotherapy both.

Tuesday brought the nausea and fatigue, but I was still able to go to work. It helps that I work with family. Taking a lot of small breaks makes it easier to manage. Plus, it was a beautiful day, and the sun felt amazing!

At work with the boys

Yesterday (Wednesday), I crashed. The fatigue was overwhelming. I woke up with a rash all over my legs. It was definitely the worst day I’ve had so far. My head hurt so badly that I couldn’t even watch tv or listen to music. I spent the day in bed in a dark room.

I downloaded a spreadsheet to track symptoms. I want to look for trends so that I can anticipate the bad days ahead. This morning, I feel a little better. I’m finally going for my CT scans (won the appeal!). It will be good to have reassurance that this thing hasn’t spread.

Looking forward to a good day.

We did the thing!

Shaving my head, 1/11/25

The kids all got together yesterday because we had family photos taken. Afterwards, we went home, ordered pizza and shaved my head. I’m not attached to my hair at all, so there were no tears involved. What bothered me more than losing my hair was the constant shedding and having to clean it up all the time. It was on my pillow, in the tub, on my clothing… basically everywhere. That was stressful.

I feel a million times better this morning. One less thing to worry about! Three of my kids ended up shaving their heads as well. There was a lot of laughing, chaos with the grandkids jumping around, food and fun. It was perfect.

The thing that I am most grateful for is definitely the love of my family. So often, as moms, we put everyone and everything ahead of ourselves. It is easy to disappear into the background. One thing that this whole process has showed me is that I am not alone, and that is an amazing feeling.

“When everything goes to hell, the people who stand by you without flinching — they are your family.” — Jim Butcher

Butterfly, Jon and Echo shaved their heads with me.
Starting off with a mohawk.
AB lets me borrow his dreads.
Violet wasn’t sure about it.
My baby and me.
my badass daughter
nothing but laughs last night

/

this system is broken

Insurance is so frustrating to deal with. My doctor ordered an MRI, two CT scans and a bone scan in early December. The MRI was approved, but the other three were denied. I filed an appeal on December 16. They said that I would receive proof of appeal in the mail but that they would not notify my doctor. Any additional documentation supporting my claim, however, should come directly from the doctor and not from me.

It has been over three weeks, and I have received nothing.

I called today and was told that there was no appeal. After an hour on the phone, she finally found my appeal and said that it had already been closed. After review, they reversed their decision and decided to approve the tests. BUT, they had to be completed within a certain time frame.

I told her I never received that information, and she said that notifying me was not necessary. So, no update from them at all. No letter in the mail, no email, no call, no notification to my doctor. How am I supposed to know to schedule the tests? What is their time frame? I requested written confirmation, and she said they were unable to provide that.

I called my doctor, and their system still shows the tests as denied. They are going to try and reauthorize and let me know.

Can you imagine the number of tests and procedures that the insurance company doesn’t have to cover simply because they make the process so difficult to navigate?

TNBC by numbers

When I asked for the referral for a mammogram, I wasn’t concerned. Less than 2% of screening mammograms result in biopsies.

When they recommended an ultrasound, I wasn’t concerned. Twice before there were areas of concern that required a follow up ultrasound, but everything was fine.

When my doctor recommended a biopsy, I wasn’t concerned. Most biopsies (80%) are NOT cancerous! I had a biopsy previously that turned out to be benign. The odds were in my favor.

When my primary care doctor told me that I had cancer, I went home and started to do some research. No one wants to have cancer, but it is no longer a death sentence. Prognosis and survival rates are very good, unless the cancer has spread. The exception seemed to be Triple Negative Breast Cancer (TNBC). This subtype of breast cancer is rare (only accounting for 15% of cases) and very aggressive. It is more likely to spread and also has a higher rate of relapse.

On my first visit to the oncologist, I was determined not to get overwhelmed. “As long as it isn’t triple negative, everything will be ok,” I told myself as we waited for the doctor. She started explaining hormone receptor status and I knew where it was going. My heart sank. I looked over at my husband and he looked confused, but happy? He thought that being negative for all three was a good thing.

“Early-stage triple-negative breast cancer is more likely to spread to other areas of the body than other types of breast cancer. In fact, one study found that people with early TNBC were four times more likely to develop metastases. Other research suggests one-third of people with early TNBC will develop metastases. Doctors sometimes call TNBC an aggressive breast cancer because it is more likely to recur, often within the first 4 years after diagnosis.” [link]

So, here we are… playing the numbers. I feel a little like this cancer is playing Russian Roulette in my body. Will it spread? Will it come back? Time will tell, but for now I just have to hope for the best.

Good morning!

January 8, 2025

Woke up this morning missing a big patch of hair along my hairline.

#3

Treatment 3: January 6, 2025

This is the last treatment in my first cycle. My hair looks crazy, but it has already started falling out. We have pictures this weekend so I’m trying not to wash/comb/style it at all. Hoping that helps keep it from falling out before Saturday. Also, when I tried to curl my eyelashes this morning a bunch of them came out. 😬 Losing my eyelashes/eyebrows is worse than my hair.

I feel really good today – tired, but good.

My daughter set up a photoshoot for our family next Saturday. We’ve never had photos taken before, so I’m really excited about it. My hair is starting to fall out. I think after the photoshoot, I may shave it off. I don’t like shedding everywhere like a mangy dog.

Rough Day

Had to work today – at a house touching up and staining exterior columns. There is such a big difference in my stamina and energy level after starting chemo. I wasn’t able to do nearly as much as I would have normally. Everything felt a million times harder. By the end of the day, I was exhausted and in so much pain. I don’t know how I can do this for a whole year.

Mike is still working on my bathroom, so today’s picture is from the kids’ bath. I will be so happy when my new space is done.

Happy New Year!

It’s a new year, with a new set of challenges. This is definitely not where I wanted to be, but there is no getting out of it. A couple of days ago, I went for my second treatment. This one was chemotherapy only, no immunotherapy. It didn’t hit me as hard as it did last week. Yesterday, I was able to work for a few hours. But this morning, I woke up feeling terrible.

Treatment 2: December 30, 2024

Taking a picture together every week before going in for chemo, as a way to document the year together.

The most stressful part of this, for me, is the worry. How am I going to feel? What am I going to be able to do? How are we going to pay bills? Buy food? There is so much that goes into making this household function that I’ve always done alone: budget, cook, clean, shop, organize.

So, my goal for the new year is to give up control and let things go. I need to trust my family to do more – for me and for themselves. I’m going to focus on the positive and try not to put so much pressure on myself.

“The greatest weapon against stress is our ability to choose one thought over another.” — William James

Pink

The family surprised me on Christmas and everyone showed up in pink shirts that said “I wear pink for” my wife, my mom, my Kiki (what the kids call me). It was super sweet.