Long Overdue Update

Historically I have never been consistent with journaling. I get behind, feel overwhelmed, and then abandon it. Recently I have been challenged to journal my experience- the more uncomfortable, the better. This is totally out of my comfort zone but I’m going to give it a try. I’m not going to wait for Dan to proof my writing so enjoy any misspellings or incorrect punctuation.

 

Treatment Update

Step one of my treatment plan was ten sessions of Proton Therapy. I completed that with minimal side effects! Most of my side effects came from the steroid they had me on. I wasn’t getting more than four hours of sleep a night, I gained weight (my face ballooned!), and the bags under my eyes grew darker. All of my treatments were at night so during that time I only saw my kids for about 10-15 minutes before I left. But don’t you worry, they were definitely awake when I got home waiting for me to lay with each one of them. 

 

What does Proton Therapy look like? It looks like laying on a cold surface with your head strapped to the table. I couldn’t open my eyes or mouth and had to lay still for about 20 minutes. While my eyes were closed I could see blue light and the ozone smell it emitted. This treatment caused my hair to fall off and it’s expected to grow back in 4-6 months. I am so grateful to have access to the treatment I need. We met people that were traveling from many other states for this treatment. I’m so grateful I could still go home to my bed and family every night. 

Snacks and a warm fireplace were enjoyed by
my drivers (Dan, my mom, and my sister).
I peacefully slept on the drive home every night
while being chauffeured. 

How my face looked after every treatment

The lovely custom green mask was literally
snapped onto the table so I could not move.
I was really grateful I wasn't claustrophobic.

Three weeks after I completed Proton Therapy, I started my chemotherapy regimen. I receive Herceptin via my port once every three weeks, which I’ve been on before. Thankfully I didn’t have any side effects so we’re not anticipating that to happen. In addition to Herceptin, I take two pills of Tucatinib, eight pills of Capecitabine, and two pills of Memantine (to help with potentially memory loss from Proton Therapy) TWICE a day. That’s a lot of pills and I quickly learned the hard way to take with food! I am grateful to Dan for making sure I take my pills and for providing me food to take with them. So far, the side effects have been minimal so I’m feeling super grateful about that. I’m also REALLY looking forward to my hair growing back!

 

Let’s talk about emotions… After this latest recurrence I was scared. A type of scared I’d never experienced before. I was so consumed with dying and leaving my family behind. My kids started worrying about me dying and we tried to help answer our ten-year old’s question of why my cancer came back worse than before when he prayed I wouldn’t have cancer. As I processed all of my fears I came to the realistic reality that I might die younger than I thought I would. I also have confidence that my family will be okay. Yes, it will be hard, but they can do hard things. We have such a wonderful support system around us (it has truly been overwhelming) that I know will lift them up. Now, I don’t plan on dying anytime soon. I’m on a very promising treatment plan and there are many other options if needed. But accepting this potential reality that I might die sooner than I thought was really very freeing. I felt peace and stopped worrying. 

 

I’ve been focusing on living in the present and have been saying “yes” to my kids a lot more. I took Claire to the library for the first time (I blame Covid for her first library visit being at age three), I pulled out all of the Barbies AND the accessories (so very nice of me), I stop what I’m doing to really listen to my kids, I let the laundry build up, and try my best to not stress about the state of my house. There are things I cared about before that I could care less about now. My online shopping has significantly decreased *gasp* as my focus has moved to creating memories, which we have been trying to prioritize for a while now. This was the kick we needed I guess. We are very intentional about how we spend our time and who we spend it with. Our dozens of house projects are no longer our priority, although I still wish we had unlimited funds to pay to have everything done. It’s amazing how quickly cancer changes your perspective on life.

 

In order to feel peace I have been focusing on being present every day. I am mindful of my thoughts and how I spend my time. I have been giving myself more grace and am trying to change the self-critical thoughts that occupy my mind. I am learning to fully live. I am grateful for every day I have with my family and for every day that I wake up. I am grateful I feel well enough to work, cook, clean, drive my kids to sports, walk without pain up my spine, sleep eight hours a night, and maintain a normal routine.

 

I am so grateful for the village we have around us. There really is so much goodness in this world! We have been overwhelmed and lack the words to adequately express our gratitude. We promise to pay it forward as often as we can. We are grateful our kids our learning what it’s like to give AND receive help. Dan and I are the last people that will ask for help but we are learning the blessings that come from humbling yourself to receive service. All of your kind words, prayers, positive thoughts, and acts of service are not lost on us. We are so grateful!

 

I’m going to end this post with a song by Weezer that has really resonated with me lately:

 

A little bit, a little bit of love

Goes a pretty long way

Love is really like a wonder drug

Let’s medicate

And say goodbye

To the drama

It’s a beeline

To Nirvana

If you’re looking for the words to say

A little bit of love goes a pretty long way

…….…

A little bit, a little bit of love

Goes a pretty long way

Take a look at where you started from

And where you are today

You climbed mountains

Swan oceans

You got knocked down

You kept goin’

In the end you know you got to say

A little bit of love goes a pretty long way