kristyk.life

new normal

January 25, 2025January 28, 2025

on managing expectations

This chemo journey has been easier than I feared but harder than I expected. Any one moment is manageable. A day is doable. It is the fact that it doesn’t end that makes it difficult.

Six months ago, if I had woken up feeling like I do today, I would have said (on a scale of 1 to 10 of feeling badly) that it was a six and I should stay in bed. Drink lots of water, rest and listen to my body.

But my body is screaming at me in ALL CAPS and it never ends.

Today, I’m thinking that it feels like a two or three and I need to get up and do as much as possible before it gets worse.

I am still in the process of recalibrating my baseline and defining what feeling ‘good’ means for me right now. I have nineteen more treatments before surgery and another six months (at least) of radiation and immunotherapy after that. So, I’m not even halfway to the halfway point.

There have been a few tears this week, as I’ve been overwhelmed with the fatigue and stress and fear of the future. Honestly, I’m not even worried about my health or treatment or the possibility of dying. It is the constant worry of daily life. How am I going to pay the electric bill when I can’t even get out of bed to work? How am I going to mop the floor when I can’t even manage sweeping up? What about the dishes? The laundry? Holidays and birthdays are coming up and I don’t have the energy or money to plan parties or cook family dinners.

A bit of good news this week is that I was able to get my CT scans and the bone scan. Everything came back clear, which is fantastic news. The tech for my bone scan told me that my pelvis had been broken at some point, which was news to me. It was very interesting to look at the pictures and not have any idea how an injury like that happened. A mystery!

Since chemo is on Mondays, the weekends have been the days when I feel the best. My goal this weekend is to be grateful and make the most of these two days without overdoing it. I’ll do a little work, a little cleaning… focus my mind and calm my soul.

This too shall pass.

Family

January 25, 2025

We finally got back the pictures from our family photoshoot. I’m so happy to have photos of (most of) the family together. We were missing four kids and four grandkids, but it is next to impossible to get everyone together at the same time in the same place.

memories

January 20, 2025

Triple Negative Breast Cancer (TNBC – more info here) tends to affect younger women more. Looking through Instagram for other people with this disease, I was shocked at the number of women in their 20’s, 30’s and 40’s. Although I’m only 52, I’ve lived a pretty full life already. I’ve been married 28 years, raised all my children. Yes, this sucks but it isn’t something I can’t handle. One thing that comes with age is resilience, knowing that nothing stays the same.

Sometimes you will never know the value of a moment, until it becomes a memory. – Dr. Seuss

Sunday morning, I was going to pick up some breakfast and saw hot air balloons. On a whim, I drove over to watch them. A flood of memories popped up, remembering how I used to take my kids balloon chasing. Balloon rallies in Albuquerque, Mesilla Valley, White Sands. While I waited in line at the drive thru. I opened Facebook and saw my daughter posting pictures of the balloons with her two-year-old. He looked so excited! I literally started crying, sitting alone in my car. No matter what happens to me this year, no matter how hard this treatment is, I know that life goes on. It makes me incredibly happy to see my kids and grandkids living life and experiencing those moments of joy.

So, here are a couple of old balloon pictures… because they make me happy.

Good morning!

January 17, 2025

Feeling a little lost this morning. I woke up early to take a shower. Usually, I shower at night to avoid wet hair in the morning. That isn’t a problem anymore… The last couple of days have been really bad, but I need to get up and get my butt to work. The bills are a constant worry. I’m still tired and my face is really puffy. My rash feels worse today. At least I’m not as nauseous.

The physical problems are only part of it. I’m feeling very emotional this morning. There is a lot of guilt because of the strain that this is putting on my family. There is so much that needs to be done around the house – things that I usually do myself. My purpose for the last 28+ years has been to make things as easy as possible for them. And now, I feel like a burden. It sucks.

what a difference a day makes

January 16, 2025

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!

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!

January 12, 2025

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.

this system is broken

January 9, 2025

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

January 9, 2025

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

January 6, 2025January 8, 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.