A warning; this might be one of the longer blog posts I will write. It certainly will be one of the more difficult blog posts I’ve had to write. I will get into what makes it difficult, later in this post. But first, lets begin with how my first few treatments went.
As I wrote in my last post, I had my chest port installed a few days before chemotherapy treatments were set to begin. I was nervous & anxious about beginning treatment, but I was ready to get it going. I was feeling strong after several weeks of bed rest. I showed up for my first day of chemotherapy and it almost felt like my first day of school. I had an orientation-type meeting with a nurse and my oncologist to review what the day would entail. As I also wrote in my last post, my chemo regimen would consist of three drugs: leucovorin, fluorouracil (5FU), and oxaliplatin, with the 5FU drug being administered over 48 hours via a pump that I would go home with. I met with several social workers to talk about mental health (so incredibly important during this cancer journey) as well. Then, it was time to drip.
(First day of chemotherapy)
Upon entering the infusion floor, I was taken back by how many people were receiving chemotherapy treatments. It really hadn’t hit me until then, just how awful, widespread, and non-discriminatory cancer is. There were people of all ages, races, genders, etc. Cancer does not discriminate, it does not care what you look like, how fit or active you are, how old you are….it just attacks. It truly is, to me, the worst thing in the world. I made my way back to the chair I would be receiving treatment in and found I would be sharing my little cubicle area with a gentleman who seemed to be about my age. The way the infusion floor is laid out at MD Anderson at Cooper was very comfortable yet open. The chairs were leather recliners, very relaxing, and they even had a massage option! I met my infusion nurses and had another quick orientation about the drugs I would be receiving. I was then hooked up, and the process and my chemotherapy treatments began.
Over the course of the next 4 hours, the chemotherapy drugs were infused into my body via my chest port. I don’t recall having any immediate side effects during infusion. I talked with the gentleman I was sharing my cubicle with for most of the treatment. He was a 25-year-old man receiving treatment for testicular cancer, it was also his first treatment. We talked about our experiences, our lives, and how, pardon my French, shitty it was to be our age with cancer. I truly believe that God places certain people in our lives for specific reasons, and I believe that gentleman was a gift from God. What were the odds that in an infusion lab of, maybe, 100 patients, I would be paired with someone similar in age and also undergoing their first treatment? Maybe I am wrong, but God has put so many people in my life over the past 7 months that I cannot believe it to be coincidence. Talking with this guy during my first treatment helped calm my nerves, and we got through that first treatment together. I never saw him again, but I hope he is doing well.
When my treatment was over, Sarah came to pick me up and it was thankfully time to go home and rest. The nausea kicked in almost immediately. The anti-nausea medications I had helped significantly, but there were still constant waves of nausea. I wasn’t throwing up…but it felt like I had just eaten a big meal of something that I shouldn’t have eaten. That’s the only way to describe it. Just constant uneasy feelings in my stomach. The fatigue also set in pretty quick too. I think I took a long nap when I got home, and I have never been a napper. To me, the worst side effect was the neuropathy and cold sensitivity. For several days following treatment, I could not touch, eat, or drink anything that was remotely chilled. I couldn’t even open the refrigerator. I had to drink room temperature water (cold, ice water is my favorite beverage of all time), so this was torture. If I tried to drink something even a little bit chilled, it would feel like I was swallowing glass…or drinking a cement milkshake. Not a fun experience.
Overall, the side effects lasted about 3 days following treatment. At the time, I thought “this isn’t too bad”. I was able to work and live my life somewhat regularly for the majority of days in between treatments. Before I knew it, it was time for treatment #2.
One of the routine tasks I would have to do before every treatment was having blood tests and lab work done. This would measure my white and red blood cell counts, organ functionality, and several other metrics determining how I was responding to the treatment. One of the blood tests performed is known as a CEA (carcinoembryonic antigen) marker. This test would measure cancerous tumor markers in my blood stream. A normal, healthy, CEA marker is between 0 and 2.5. Prior to surgery, my CEA was around 5. Another tip to anyone having symptoms of any kind, ask your doctor to include CEA markers in your lab work. Even though I was concerned about cancer and expressed this to my physician, CEA was not included in my bloodwork script. Had it been, I may have gotten a several month head start. Oh well, no looking back.
My first round of blood tests revealed that my CEA marker was around 1.6, in-line for a healthy, cancer-free individual. I was thrilled and relieved. I truly believed this meant the cancer had been successfully removed during surgery, and the chemotherapy would eliminate any remaining cancer cells.
I had chemotherapy treatment #2 two weeks later. I dealt with similar side effects, but again managed to live a somewhat normal life in between treatments. I felt like I was getting the hang of this new life I was living. I would be bed-ridden for about 3 days following treatment, but after that, I was able to go about my life. Sarah and I even attended a Phillies vs. Orioles game as guests of Trey Mancini in between treatments. I met with my surgical team to discuss reversing my ileostomy when I was finished with chemotherapy, which was exciting for me. I felt like the light at the end of the tunnel was attainable. I was starting to think about life after cancer and chemotherapy. Sarah and I booked a trip to Europe for summer 2022 for our overdue, real honeymoon. I was rolling, I felt like nothing could stop me from beating this cancer and returning to my life. Then, everything changed.
After my second round of chemo, my CEA marker jumped to 11. I brought this to my oncologist’s attention but was told “CEA markers can move around for a variety of reasons during chemotherapy. We will monitor it, but its no reason for concern right now.” I was a little concerned, but I trusted my oncologist and decided to not worry about it too much. Prior to my third treatment, however, my CEA marker jumped again, this time to 28. I’ll never forget getting the call from my oncologist. I was actually in the chair at my 3rd treatment when she called and told me “your bloodwork is moving in the wrong direction. We need to do a CT scan to see what is going on.” I tried not to panic, I clung to the theory that chemotherapy can make your CEA marker move around in each direction. I felt healthy and better than I had in months….how could anything be wrong?
My CT scan was scheduled for October 5th, 2021. This is a date I will never forget. I didn’t sleep a wink the night before. To be honest, I couldn’t tell you what I was nervous about. I was confident in my doctors and chemotherapy; I truly believed I was on the path to remission. I went in for my CT scan and as soon as it was finished, I knew something was wrong. The radiologist administering the scan told me to wait around for 10-15 minutes so I could speak to my oncologist. “Okay” I remember thinking, “I guess she just wants to review the results with me now.” The radiologist was also asking me questions like, “how are you feeling?” and “are you having any trouble breathing?”. I received a call from my oncologists office and the nurse I spoke with told me I had a pulmonary embolism (PE) in my lungs and I needed to be put on blood thinners immediately to remove the blood clot. This wasn’t a shock to me; my mother had a pulmonary embolism in 2019 and my family has a history of blood clots. Plus, a potential side effect of the chemotherapy was blood clotting. Sure, this caught me off guard but I wasn’t totally surprised at the news. I figured, I’d go on blood thinners and the problem would solve itself. I was going to leave the hospital, head to Rite Aid to get my blood thinner, and I figured that would be that. Then, my oncologist called.
The CT scan revealed, not only the PE in my lungs, but 15 new tumors on my liver. Hearing this almost made me fall over. I’ll never forget where I was when I got this call; I was standing outside of the hospital, waiting for Sarah to pick me up, in the pouring rain. My mind was going in a million different places at a million miles per hour. “How could this happen?” “My scans from June showed that my liver was clear, how could it now be covered in tumors AFTER surgery? After the cancer was supposed to be gone?” It’s up there for the worst phone calls I've ever received. My oncologist told me that this is the risk with cancer…it spreads. I knew it was a risk, but I thought I was on the right path. I was feeling better and feeling like I was speeding towards recovery. Now what? I about lost it on the phone with my oncologist. She didn’t instill confidence that this was under control, but made sure to tell me I was now considered stage 4 and my life expectancy would drop dramatically. I could have died right there on the sidewalk of the hospital. I probably looked like a looney to the other patrons waiting outside; pacing back and forth in the pouring rain, crying and screaming into the phone. Surely not one of my finest moments.
Writing this out is an extremely difficult and emotional task for me. October 5th, 2021, along with several other dates now, will forever be burned in my memory. Any cancer patient has these dates they’ll never forget. Again, in a second, my life was turned upside down. I relive this day all the time in my head. I was blindsided, I knew there was a risk of the cancer returning at some point…but I was thinking years down the road, not two months after my surgery. Accepting that I was now a stage 4 cancer patient is something I still have trouble with. My oncologist was correct; now that I was stage 4 my life expectancy did drop dramatically. Stage 3 patients, for example, have about a 60-70% survival rate 5 years from diagnosis. I liked those odds. Stage 4 patients, meaning the cancer has metastasized to other parts of the body, have about a 14% survival rate over that same time period. I did not like those odds. I was crushed…I went into a pit that nobody wants to go to. My hope was gone. All I could think about was the life I was planning to live, that I’d now never get to do.
That’s going to be it for this post….there’s much more to my story. As I wrote in a previous post, there are peaks and valleys for anyone’s cancer journey. This just happened to be a very, very low valley. However, this development led me in a direction that I believe has bettered my life. As I also said before, I have been defying the odds this entire journey; I wasn’t supposed to have an ileostomy, but I do. I wasn’t supposed to have colon cancer at 30, but I did. The doctors were in shock that I was able to even walk prior to my surgery, but I was. I have been defying the odds this entire process, and I plan on continuing to do so. “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isiah 41:10 A biblical teaching I think about often is the story of Job. Job was a heavily righteous man who had everything; a large family, money, property, livestock, etc. Job was tested mightily by the devil; all his belongings were taken away, his health suffered, and he lost his children. Job had every reason to curse God for what was done to him, but he remained faithful to the Lord. His peers tried to persuade him to turn from the Lord, but Job replied, “Shall we indeed accept good from God, and shall we not accept adversity?” – Job 2:10. Despite everything Job was put through, he proclaimed, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord” – Job 1:21. Despite everything that has been thrown my way, I still have faith in the Lord. He has blessed me beyond what I deserve, and I cannot lose sight of this. We should all live our lives with the same appreciation and gratitude for the Lord as Job.
I will be posting another update soon to continue this story. Thank you as always for following along.