Treatment#2- The marathon begins

 A few years ago, I decided to train for a full marathon. I had completed my first 1/2 Ironman triathlon the. year before, and decided this was to be the next goal in my endurance adventures.

 A marathon is 26.2 miles. It was one of the hardest things I have ever done in my life.

Until now.

Now I face a different type of marathon- 26 treatments of IV chemotherapy to fight Stage 4 stomach cancer. 

I knew something was wrong a couple years ago when I got a nasty stomach virus that put me in bed for over a week. I literally remember laying in bed thinking, “Something inside me is changing.” And from that time forward, my GI system was never quite right. 

The last 2 years have been full of a myriad of doctors, surgeries, and procedures to try and figure out what was causing my inability to eat. Eventually we discovered that I had Pyloric Stenosis. The Pylorus is a muscle that sits between the stomach and the intestines. It is supposed to expand and contract to allow food through, then close back up. Mine was VERY stiff and the opening was extremely small. I lived on semi-solid food and liquids for over a year, despite 2 attempts at trying to dilate my pylorus from inside. 

After my second failed dilation, I started looking for a surgeon. I knew that surgery was going to mean some major life changes but I was miserable and ready for the knife. I found a wonderful surgeon who specializes in less-invasive robotic surgery and he agreed to take on my case. 

After reviewing my CT, we decided the best route was going to be gastric bypass surgery. This would completely remove the pylorus, hopefully allowing me to eat semi-regularly again. By this point I was about 20 lbs lighter than usual, nauseated every afternoon and evening, sleeping sitting straight up, and waking 1-3 times a night to get sick. I was struggling at both work and home with fatigue due to not eating or sleeping. I wasn’t even able to work out, which for me was pretty serious. It was time to do something.

In early November, I handed my body over to my surgeon and a nurse anesthetist. The surgery was 3 1/2 hours long, and when I woke up in my room my husband had to be the one to tell me the stenosis had actually been caused by a 5.5 cm cancerous tumor. My stomach had 1.5 liters of fluid in it before he started and had stretched tremendously, to the point it was pushing up my diaphragm. He removed the bottom portion of my stomach, the tumor, and about 3 inches of intestine. He removed 26 lymph nodes to check for cancer cells. He also found that what I had assumed was an umbilical hernia was actually some kind of nodule of which he took samples of to test for cancer. The margins of the tumor removal were clean, so now it was a waiting game for the path results.

I had this stupid tube down my throat for 2 1/2 days. I do NOT recommend it- probably was the worst part of my hospital stay.

My surgery was done robotically, so I had 5 “stab wounds” and an additional incision at my belly button. I will never have anything close to a normal belly button again lol.

All healed now! And yes, my belly button is gross. It’s ridiculous how hard it is to get cleaned out lol.

I went home from the hospital 3 days after my surgery, an adventure worth it’s own post another day. A week later, my surgeon called me to let me know that indeed there were cancer cells in 1 out of the 26 lymph nodes they removed from my abdomen, and that there were a few tumor cells in the umbilical nodule. I had an appointment with him a few days later, and it was here that I heard the words “Stage 4” for the first time.

There are only 4 stages of cancer, the last of which is considered terminal.

Because the cancer had jumped or “metastasized” to the nodule, I was technically Stage 4. He had set up a meeting with an oncologist that same afternoon for me, and to be honest most of that is a blur. I came out of there knowing I needed a PET scan, bloodwork, and chemotherapy of some sort. 

I did what any nurse would do- I started looking up information about gastric cancer. Bad idea. Less than 30% survival rate and average lifespan is 12-24 from diagnosis to death.

Fuck.

Gastric cancer is usually diagnosed late due to vague symptoms, and most are over the age of 65. By the time it is found, other malignancies have usually already formed.

My bloodwork was encouraging, showing a low chance of malignancies. But my PET scan got denied by my insurance, so I was forced to start chemo before knowing exactly what I was fighting. We decided to move forward with the more aggressive chemo, assuming that I did have other tumors. My surgeon was encouraging, assuring me he had looked all around my abdomen and had not seen anything suspicious. My mammogram and Pap in October had been negative. So I needed to get through clean ovaries, lungs,    brain, and bone.

This is my Power Port. It’s a fancy permanent IV that is placed surgically under my skin and attaches to one of my biggest veins. Chemo needs to be given in a big vein, cuz it’s nasty and can damage smaller veins.

My first chemo treatment was...emotional. I had to go alone (stupid COVID), and I could barely get my name out without crying when I walked up tot the front desk to check in. I was handed a ton of paperwork, told about possible side effects, and away we went. 3 hours in a recliner, amidst others on similar journeys. If you ever need perspective, go visit an IV infusion clinic. Wow. Such a mixture of strength and weakness. Cancer does not pick and choose- I saw young and old, healthy and frail. I left feeling pretty good, although they had pumped me up with steroids and anti-nausea medicine. 

Treatment “#1”

The next 4-5 days were spent honestly trying to crawl out of a very deep dark hole. The person who has always been the cheerleader for others found herself in a place where I could not get through a day without crying or being convinced that this was the end. I spent more time in bed and on the couch than I had since having pancreatitis. My husband had to snap me out of it several times, insisting I get up and move and eat. I dreaded showers, as I was forced to see all my scars,  my port, and the absolute muscle wasting already happening. How was I supposed to recover from this? Who was this person in the mirror? Why should I even try if this is the beginning of the end?

Like I said-deep and dark.

Finally, the phone call came that my PET scan was approved. By the time it got scheduled, I was through the worst of my side effects and was able to drive myself to the hospital. Two days later, the results showed up on my electronic chart. It was early morning and I was by myself when I clicked on the tab labeled “PET skull to thigh” with trembling hands. I saw a lot of the word “ no”, and scrolled to the end.

No malignancies. 

I immediately began crying. No that’s not true. I sobbed. Maybe....maybe my son would have me through his college years. Maybe I would see my grandkids grow up.  Maybe I wouldn’t have to leave the profession I love. Maybe we wouldn’t have to move.  Maybe my mother wouldn’t have to bury her daughter. Maybe my husband wouldn’t be alone. Maybe...

I called my husband at the gym and somehow got the words, “I’m clean” out. He knew exactly what I meant.  I called my mom, who had shown such strength in front of me but finally cried happy tears alongside her oldest child. 

I woke Sam up to tell him about my PET results. He sat up like a rocket to hug me and in turn gave me a fat lip by cracking his head against mine...

I know it’s not over. Because I had a metastasis, I will always be a cancer patient. I will always have to stay vigilant, always have periods of worry as I await bloodwork and PET scan results. 

So today I start Chemo treatment #2. I meet with my oncologist next week, and I plan to get a second opinion as well at Ohio State University. I need to ensrure my plan moving forward is one that acknowledges that I may still have cancer cells floating around inside me that have nit been killed, but also that I am a 45-year old at the height of her professional career. I have a mountain to climb on my bike and a full Ironman to complete. Right now we are hoping for a year of chemo, then pausing as long as my scans remain negative.

One year.

26 treatments.

I can do this. It’s just a marathon, right? 

Ever been to a race? There’s a lot of music and people cheering at the beginning. Then every mile or so there’s a table of volunteers with snacks and drinks, again cheering you on. Friends and loved ones line the streets with signs along the way. There are Porta Potties along the way and a big celebration at the end.

I’m hoping this marathon is very similar.

It’s the race of my life. Or maybe for my life. I don’t know if this will be my last marathon, or if there will be others in my future. Right now, mi am focusing on the fact that my lab work is good and my scan is clean. The current plan is chemo for a year as long as I tolerate it well enough. After that, if my scan is still clean, I will most likely take my chances and come off chemo. Cuz I gotta live my life and chemo takes away about half of it.

I’m going to The James at Ohio State University on Monday for a second opinion. I haven’t been impressed with my current oncologist or his office, which saddens me so much as a healthcare provider. I am also returning to work on Jan.12- something that both my soul and my brain desperately need. 

I have so many thoughts, feelings, and emotions swirling around every day about this crazy situation that I am in. I’m hopeful this gives me a place to express them, but also allows others to understand what this kind of journey really is like. For some people who have been on this road, it may be painful and I am sorry for that. But I truly want people to know how it really is- the good, the bad, and the ugly. Ask questions, make comments, whatever you’d like. I’m here and I want to be a voice. I need to be a voice. Because I will weather this storm much better with you than without. My strength has always come from helping others learn, grow, believe in themselves,etc. and this is no different. So put on your most comfortable running shoes and let’s get this bitch started.

#FuckCancer

#LittleSteps

#Mile2Complete