C2C4-DK 

 "C2C4-DK" is a common phrase that is used at my work in the ambulance. It means, non-emergent, everything is safe, ambulance please come for an intoxicated person. This is the statement that has been playing in my head the last couple months, with the lack of blog posts and updates. But instead of non-emergent, everything is safe, it wasn’t for a “DK/drunk person”, to me it meant:

 non-emergent, I am safe- I DON’T KNOW. 

 The reason it stood out this way to me was because in February, I had a PET Scan that showed that the cancer had not only grown back, but had spread. 

 We knew from October the cancer was in: 

Left armpit lymph nodes 

Left neck/collarbone lymph nodes 

Left lymph nodes in breast/ the tumor 

Little bit in the right collar bone lymph node 

 

But this time the cancer had spread: 

Back into my sternum 

 Into my right armpit lymph node 

A small spot on a lymph node on the outside of my lower lobe on my left lung 

A small spot on a lymph node on the outside of my upper lobe on my right lung 

And grew/became more active in the previous spots listed above. 

 Doctors measure cancer’s metabolic activity, aka how fast it is growing, by measuring the SUV- or the standardized uptake value. The range is below 2.5 means it is very slow, and not threatening. Anything over 10 Is intense, and over 15 is very intense. 

 So, if you are curious, the spots looked like this. 

 Left collarbone lymph node: SUV 8.9 

Right collarbone lymph node: SUV 4.8 

Left breast: SUV 14.2 

Left armpit lymph node: SUV 12.8 

Right armpit lymph node: SUV 8 

Right Upper lobe lung: SUV 1.8 

Left Lower lobe lung: SUV 2.8 

Sternum: 9.9 

 Basically, since I was diagnosed in July of 2022, we decreased the SUV in October of all spots but then went back up in SUV in February, with some new spots. What changed during that time period? Good question. We were aggressively treating my cancer with many different therapies, and all were tested through blood work to work well against my cancer. 

 It was confusing for me, and so discouraging to find out that what I was doing, wasn’t enough to put out the fire of the tumor that was in my breast causing all of this cancer to spread. The day we found out all of this out was when I was getting my wig died in Iowa, and had such an incredible day. It was Valentine’s Day. I had just got done working a great rotation at work, and really believed that the cancer was just inflamed, and not growing. How could it with all the therapies? I was still eating well, even though I wished I could just crush a bowl of chips & queso, an entire Ice Cream Cake, Reese’s peanut butter cups- BEER. Oh, how I have missed beer dearly. So many random things I have craved, but I thought there’s no way this could be growing. We are doing so many therapies, tailored to my cancer. 

 Back in November we had a test done that was sent to Greece, to determine what treatments my cancer responds to. It also measured what’s called our circulating tumor cells. How many not-yet-replicating cancer tumor cells are in my blood, that could take up host anywhere in my body, but haven’t yet. 

 That number in November was 4.7 

 An ideal number would be 0. But we were encouraged because you want the number under 5 to feel “safe” like it’s not rampant in your body. 

 So, in February we re-tested my circulating tumor cells. Oddly, even though the cancer had become more active and spread, my circulating tumor cell count had gone down! 

 It is now at 3.8 

 So weirdly enough, even though some treatments weren’t working to kill the aggressive tumor, it is working on the circulating tumor cells, which are the source of re-occurring cancer down the road. 

 On Valentine’s Day had a moment in our journey that made us stop and say, what are we going to do next. We discussed with my two different doctors, Oncologist and Doctor of Osteopathy what to do, and consulted with family. My oncologist suggested we try a new way of treatment which my other doctor fully supported. 

 For my type of cancer, HER2+, that means that the Her2 Receptor on the outside of my cells, is stuck in the “on” position, and is making too many new cells and too has too many receptors, and the Her2 Receptor is what is responsible for splitting and growing new cells. So, this is why the cancer is growing at an aggressive rate. 

 Normally with this type of cancer, an Oncologist (cancer doctor) would treat this with Taxol (chemo) and then two other drugs, Perjeta and Herceptin, two immunotherapies. These two drugs have been studied and proven to turn off the overactive Her2 receptors, causing a slowing or stopping of the cancer growth. One would receive the two immunotherapy drugs once every three weeks, and then Taxol (chemo) each week additionally. This is what we did in August, for 2 rounds. 

 Instead of letting chemotherapy completely destroy my body, we stopped the chemo in August and waned to try other methods to help build my immune system to help kill the cancer cells and heal my body. The immunotherapy drugs were also stopped in August, even though they don’t come with such harsh side effects like chemo, but they do come with a risk of heart failure. Also- a scary thing at age 31. Thankfully I have incredible resources and community that help keep me healthy at City of Lakes, my Cross Fit gym. I have friends that encourage me whenever they are with me to drink more water, take my supplements, eat well, and support me in whatever way I may need. 

 My oncologist suggested we separate the chemo from the immunotherapy drugs, and try the immunotherapy drugs alone. And then re-assess in May. So that is what we are currently doing. Every three weeks I go into HCMC (where I work) and receive an infusion of Perjeta, and Herceptin. It doesn’t have side effects like nausea or hair loss or brain fog like chemo does, but it carries its’ own side effects, the worst being severe body aches for about 48 hours after treatment. We are learning to manage it through hot baths with Epsom salts, heating blankets, and whatever else feels good at the moment on top of regular dosages of ibuprofen. (Yes, we are still using holistic medicine in combination with modern medicine to get the best of both worlds). Approved and advised by my Oncologist, Pharmacist, and Osteopathic Doctor of course! 

 My cancer has responded well to the new treatment so far, and I have no signs of heart failure. Some people stay on these infusions for the rest of their life to keep their cancer in check, and not grow. I don’t desire this for me, I plan on healing the cancer through our different treatments, and healing my body/brain of past emotional and physical trauma I have been carrying with me for way too many years, unintentionally. 

 I am learning a lot about myself, the things that happened to me when I was younger, and in this current season of life, that make me the person who I am. Some good, some ugly. Thankfully I have a therapist through my work I fully trust and doesn’t panic or get shocked when I dump anything and everything on her. I have great friends who encourage me to utilize her the best I can, and check in with me after therapy to see how I am. Therapy isn’t easy, I enjoy learning why I am the way that I am, and how to navigate some yucky parts of life, but some days are really hard. So thankful for so many people in my life ready to reach out whenever I need someone to help pick my chin up and say “Let’s gooooo” anytime I have a little or big win like a lymph node no longer being palpable in my neck that once was the size of an almond, or just being excited that I talked to my therapist because sometimes it’s like pulling teeth for me to open up! 

 One of my best friends invited me down to Florida with her for a mini vacation and it was the first time in a long time I truly felt genuine rest. I felt free, free to dream, free to cry, free to complain-whatever I needed she was there for. I also started to learn how to get comfortable with my hair, as it has been growing! You aren’t going to wear an expensive wig on the beach or a head wrap if you don’t have to, but feeling safe in a hat or wig sure has been easy this winter in Minnesota! 

 So, for now, we are still trying to eat healthy, drink lots of our juices (thank you friends who help us with that), and stay on top of all the numerous therapies that we have been blessed with. 

 The plan is to have two more infusions of the Herceptin/Perjeta, and then do a pet scan end of May and hopefully see a significant decrease in everything! 

 I can tell you though, spoiler alert- the lymph nodes have changed significantly for the better, and the tumor has shrunk! I am not eligible for surgery to have a mastectomy because in modern medicine I am a “lost cause” because my cancer has spread, and they only do surgery to try and “contain the cancer” before it spreads outside of one breast/ or set of lymph nodes. 

 Well. I’m here to tell those doctors wrong. I get the opportunity to help save people who some would label as “lost causes” all night at my work with some of the best paramedics and doctors in the country, and I can’t wait for the "lost cause" who is saved to be me. 

Until end of May- I will be responding to C2C4-DK calls, but thankfully it’s for an intoxicated person, and not me saying “it’s not really emergent but kind-of, I am safe, but I don’t know what to do right now”. Photos below are of Kelsey and I in Florida, vacation up north on Lake Superior for my birthday after my first infusion of this new treatment, (yes I splurged and had a beer) and a photo my new hair!