For the first time on this cancer journey, I was scared. I was unsure about what the future held for me and my loved ones. When I was stage III, there was a finish line; I was due for 12 chemotherapy treatments, a few scans to confirm there was no evidence of disease (NED), reversal surgery for my ileostomy, and I would be on my way, back to normalcy with my whole life ahead of me. Suddenly it all changed. Maybe I was naïve, but I never believed my cancer would spread. When my surgeon told me “we believe we removed all of the cancer” after my surgery, I believed him. Even when my CEA markers were trending up through the month of September, I just assumed it was a side effect of the chemotherapy. The news I received on October 5th, 2021 rocked and shook me to my core.
As I wrote in my last post, the game plan changed completely. I went from a targeted finish date, to now being told I would be in “chemo for life”. Those 3 words are like nails on a chalkboard to cancer patients…chemotherapy is terrible and being told I would be on it for the rest of my life crushed me. To rehash what the CT scan showed and my oncologist’s prognosis: I had 15 new tumors appear on my liver, which moved me into the unlucky stage IV category. I was given a very unfavorable outlook. My situation went from “treatable and curable”, to just “treatable”. This means that when I was stage III, I could be cured. I could have the cancer removed from my body and live somewhat comfortably without fear of it returning. Now I was just “treatable”, which meant that I would need treatment to keep the cancer at bay, for the rest of my life. It was incredibly hard news to digest, it still is honestly. And as I stated in my last post, not to be doom and gloom, but my life expectancy dropped dramatically too.
To clear our heads, Sarah and I went to Stone Harbor, New Jersey for a few days. Stone Harbor is a small slice of paradise on the South Jersey shore. My beloved Aunt Alison has a home there, and it’s been a place of refuge for me for many years. I needed a change of scenery, I needed peace and quiet, I needed to get out of Philadelphia for a few days. Turns out it was exactly what the doctor ordered, no pun intended. Stone Harbor, in October, is desolate but things are still open. Sarah and I relaxed, went to an empty beach, watched lots of football, and tried to keep our minds off of anything cancer related. After several extremely therapeutic days at the shore, it was time to head back to Philadelphia to see what Cooper and my oncologist had in store for a revised treatment plan.
(Taking a drive on the Stone Harbor beach with friends)
I was scheduled to visit with my oncologist the following week, and I would be having a biopsy performed on my liver to get better data on the tumors residing there. The biopsy was scheduled a few days after my upcoming treatment day, so I was curious how treatment side effects could impact my biopsy. It is important to note, that my biopsy date was listed in my online patient portal, which all of my doctors and medical team at Cooper had access to. I showed up to my oncologists’ appointment extremely anxious about my new treatment. When I met with my oncologist, however, she had no idea I was scheduled for a biopsy, even though it was her recommendation to get. I was told receiving treatment that week would not be possible if I were to biopsy my liver only a few days later. I was extremely confused and frustrated; I wanted to get my new treatment underway and also wanted to have the biopsy done. I didn’t understand how my medical team was unaware of my biopsy plans. I left Cooper that day without receiving treatment and terribly disappointed.
At this point, my wife and I decided it was way past time to start seeking second opinions from the various health care providers in our area. I first reached out to Jefferson University Hospital, in Center City, Philadelphia. I met with an oncologist and his team at Jefferson, and it was like a breath of fresh air. The oncologist made me feel, for the first time since being labeled stage IV, that my situation was manageable. I wasn’t told I could be cured, I now knew that was off the table, but it was the first time I had an oncologist encourage hope in going forward. The oncologist admitted my situation was “a tough one”, but it was such a relief to feel like a team was on top of my situation. Granted, the team at Jefferson had not yet reviewed my scans and images, so they were speaking solely from experience. So, even though it was not a 100% definitive outlook and plan, feeling like a medical team was on top of my situation helped my mental health tremendously. Jefferson told me, if I wanted to become their patient, I could start treatment as soon as possible. I kept that option on the table.
Our next second opinion was at Fox Chase Cancer Center, also in Philadelphia. Fox Chase has a great reputation in cancer care in the Philadelphia-area. I was very optimistic walking into my appointment at Fox Chase. The oncologists I met with there echoed similar comments to the team at Jefferson…my situation was a tough one, but treatment options were available. One thing any cancer patient should know, is that first impressions are everything. This could not be any truer when it comes to your medical team; go with your gut. If your gut is not comfortable with your medical team, then a change needs to be made. The doctor I met with at Fox Chase was wonderful and very educated on colon cancer, treatments, and my specific situation (Fox Chase had all of my information & scans on hand prior to our meeting). The doctor’s fellow did not make me feel all warm and fuzzy inside. Sarah hates that I do this, but in my doctor meetings I tend to ask questions that are “straight to the punch”. These questions typically have tough answers; the response might be something you don’t want to hear. And when the answer isn’t favorable, I tend to “zone out”, as Sarah calls it, and tune out of the appointment, focusing only on the bad news I just received. I asked the fellow about my prognosis and his outlook. He told me I could expect to play “whack a mole” with my cancer for the rest of my life, which he said would only be a few years at best and that I should “live for now”. I understood the analogy, but comparing my life to an arcade game offended me greatly. I tuned out of the appointment after I heard that. Overall, however, Fox Chase gave us options. They could get me in for treatment the following week, which was extremely important because I had not been on treatment at this point for several weeks. Sarah and I left the appointment anxious to get things going, and I cried the entire ride home.
Our next appointment was at Memorial Sloan Kettering (MSK for short). MSK is routinely ranked as one of the best cancer hospitals in the world. I was so surprised at the time that I could potentially be a patient at Sloan Kettering; MSK is located in New York City and I was in Philadelphia. We learned, however, that MSK has several treatment facilities located in Northern New Jersey, which meant we wouldn’t have to travel into Manhattan every two weeks. Any northeasterner can appreciate that! I had spoken with several MSK patients who all echoed favorable opinions about their doctors and treatment, so I was feeling very positive heading into our appointment. The appointment itself was very similar to my other second opinions; tough situation, but treatment options were available. An advantage that MSK has over other cancer hospitals, like Cooper or Jefferson, is access to clinical trials. These give me additional options if the traditional treatment options fail (we’ll speak about this in a later post). MSK also presented the opportunity to have an HAI pump installed in my liver, which would pump targeted chemotherapy drugs directly to the liver. Only a few cancer hospitals in the United States have this option for treatment. As I said earlier, first impressions are everything. The oncologist we met with at MSK couldn’t have made a better impression on me. Early into our meeting, she said something along the lines of “I’m so sorry this has happened to you”, which I responded to with my typical “It’s okay, thank you”. Her response stuck with me, she said “No, this is not okay. This should not be happening and we will figure it out”. It was sympathetic and strong, it stuck with me. She also told me that she would worry about the bad news. My job was to take care of myself so that I could continue treatment. I can’t tell you how much I appreciated that; I’m a worrier by nature, so having my oncologist take the negative off my plate has allowed me to focus on myself. If bad news comes, I’ll hear it, but until I do I won’t worry about it. This is also something we’ll get into in a later post, because bad news has certainly risen since this appointment.
While at MSK for our second opinion, I also met with a social worker. Up until this point, I had shied away from therapy or social workers in general. Cooper offered them, but I did not use them; my situation was under control and I was confident I would be cancer-free and on with my life in the near future. Now, I was lost, my mental health was spiraling, and I needed to talk to someone. Meeting with MSK’s social worker was such a blessing. During our conversation, I told her about my mental struggles. A year ago I was focused on getting married and starting my new life with Sarah, I was planning on starting a family, and I was excited about all of the opportunities we would have in the near and long-term. Now, as a stage IV cancer patient, I couldn’t make long-term plans anymore, I wasn’t sure how much time I had left on this earth. I went from making big plans, to only looking at life in the very short-term. Natalie, the social worker, told me in response something along the lines of “We all walk around life with a fake sense of security, we feel invincible. But that security is not real and our time could come at any moment. Cancer patients unfortunately know this better than anyone.” I don’t know why, but this brought such a sense of calm over me and I remind myself of it constantly. And its true, death could come for us at any time. I know plenty of people who have passed away unexpectedly. We are all aware of the bumper stickers and slogans; “live every day”, “hug your loved ones”, “tomorrow isn’t promised”, etc. But how many of us actually live our lives according to these sayings? I try to now. I know there are counterpoints to the statement I received from Natalie, but it helped me get on with life. I can’t express how helpful speaking with Natalie throughout my treatment at MSK has been.
We left MSK with the plan of receiving treatment there and I would be going to their outpatient treatment facility in Basking Ridge, NJ, a little closer to home than Manhattan. MSK’s patient onboarding would take a little longer than we had hoped, (paperwork, paperwork, and more paperwork) so we planned on going to Fox Chase for treatment during the following week. Then, Sloan Kettering would take over my treatment and I would start there two weeks later. I was so relieved to have a plan in place; getting second opinions was exhausting for me. Not only due to the amount of phone calls and emails it takes to be seen by a doctor, but also because the topic of conversation was always “my cancer”. I got to a point where I couldn’t do it anymore. I was so tired of retelling the same story to doctor after doctor. I was also a little beaten down by the prognosis and outlooks I was given by several doctors at this point. Its not natural to hear, at 30 years old, that you might have a very limited amount of time left. How the heck can you digest that? I tried to as best I could; we had a plan, would be going to one of the best cancer hospitals on the planet, and my cancer-story was still being written. Just because something happened to this patient, or that patient, doesn’t mean it will happen to me. I still struggle with the mental gymnastics, but I have faith. I have faith in my doctors and I have faith that the Lord won’t let anything harm me.
I cannot stress enough how important it is to seek and receive second opinions. There is nothing more important than your health, and just because doctor A says this, doesn’t mean doctor B will say the same. It was tiresome, but the best decision we made so far in this journey was getting second opinions and becoming a patient at Memorial Sloan Kettering…I wish I had done it sooner.
"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" - Isaiah 41:10