daily

new normal

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.

memories

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!

1/17/25

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

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.

Good morning!

January 8, 2025

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

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.