Life is Good, but Right Now it’s Hard

November 3, 2023

I’m realizing just how long this cancer journey may be so as a result I’m switching my venue for updating my family and friends away from Caring Bridge over to a Blog that I can manage on a longer term basis. There may be a time when I want to reflect on these days (likely not too soon). I hope this is just as easy for you to click on to get the latest. I hope you are able to drop me a message, they continue to mean the world to me.

Yesterday I met with my awesome Oncologist. The final decision was made to stop Chemo treatment. I successfully finished 13 out a planned 16 treatments. I shared with her that I felt like I failed at the goal. She reminded me that that they are throwing the whole “kitchen sink” at me and that 13 is a solid number completed. I’m taking a few days to digest the news and by Sunday I’ll be ready to celebrate with a few college friends to ring that bell 🔔! I’m really looking forward to that.

Back when I started Chemo I was told to stop the biologic shot that keeps my autoimmune disease in control. I was nervous about that as I know what happens to my spine and joints when AS goes unmanaged. It’s been a non-issue for most of the chemo months but now that I’ve been off chemo drugs for over a week I’m suffering from a flare. Ouch 😣. However yesterday I was able to go to my Rheumatologist office and get my blood drawn for the routine tests they need and take my first shot of Tulz (type of biologic). It will take at least a month or two before I see the benefits but the stars aligned to get moving on the same day as the final chemo stop decision was made. I’m grateful to my friend that spent the morning with with me going to two different doctors offices and the pharmacy.

Today I meet with the surgeon to firm up the planning on lymph node surgery and it sounds like I’ll have the surgery a couple days before Thanksgiving. It’s not ideal from a family holiday planning perspective however I know it’s important to keep the process moving. We can’t have the gap between ending chemo and starting radiation be too large. We can’t give that stupid cancer a chance to grow.

Next week I’ll go in for a pre-op appointment with my general doctor to clear me for surgery.

If I were honest ending chemo and upcoming surgery isn’t the top item on my mind. I learned yesterday what specific drug plan the Oncologist wants me to do after radiation. She said it’s the most aggressive plan Breast Cancer patients can be on. It’s usually reserved for stage 4 patients but recent studies (and FDA has approved) have show than for Stage 3 aggressive and high risk patients this process can reduce reoccurrence rates. So what is it? The first two I was not surprised about it’s an Aromatase Inhibitor that prevents the body from producing Estrogen (as my cancer fuels off estrogen) and a second pill 💊 called goseriln that suppresses ovulation. These two combined ensures I go into menopause in a quick hurry and stay there. At my age I will quickly go back to normal cycles after chemo if we don’t stop it. There certainly are side effects but manageable while maintaining a fairly normal daily life. This part is real common for breast cancer patients. I’ll be on this combo for 5- 10 years.

The one I was surprised to learn about is Abemacilib which is chemo in a pill – for two years! This drug is supposed to be powerful at reducing reoccurrence rates in women with advanced breast cancer that is estrogen positive and HER- which is all matching my scenario. It has powerful side effects but living is the main goal so I’m going to follow her advice. I spent a few hours last night reading about the Monarch E studies and the results are strong. Even though I’m confident in the Oncologist and this is likely the best course of action known to medicine today I’m still scared. The idea of being on a chemo pill for two years is daunting. One day at a time right?

The good news is that this chemo drug is supposed to be more targeted, meaning it does a better job of not killing lots of different healthily cells. I should not loose my hair again (once it comes back) and the other symptoms should not be quite so intense. But I still will likely have digestive issues like diarrhea, fatigue, low white blood count, stomach pains, nausea and there are other less common problems. It doesn’t sound like a party.

It will all be ok but I indeed needed to again remind myself to just focus on the step immediately in front me. Heal from Chemotherapy. Manage AS symptoms. Prep for surgery. All else can wait.

It’s so healing to write out my thoughts and concerns and even more helpful to know you are supportive on this journey. God is good, I feel his love through you.