I apologize for the duration of time since my last blog entry. Life has been busy for me, which is a good thing. I’ve also kind of hit a “cancer wall” in my opinion, meaning I’ve been putting cancer away in the back of my mind a little bit…. it’s not something I’ve been trying to focus on. I’ll get into it all later.
At the conclusion of my last entry, I was beginning the next phase of my cancer journey at Memorial Sloan Kettering Cancer Center. Although the main campus is in Manhattan, they have several facilities in the greater NY area for patients who don’t live in or close to New York City. I would be traveling to their Basking Ridge, New Jersey location, about a 2.5-hour drive (if you go the speed limit) from our home in Mechanicsburg, PA. Not the shortest of commutes but it's worth the drive to be a patient at Sloan Kettering; In addition to annual health & news rankings, MSK is held in incredible regard by fellow cancer patients. I was set to begin treatment at MSK in early November, with one preceding treatment at Fox Chase Cancer Center, in Philadelphia, in late October.
I would also be starting a new chemo cocktail or regimen. My latest CT scans had shown disease progression (I hate using a version of “progress” when talking about the disease), so my chemotherapy drugs needed to change. I was now going to be receiving the Folfiri-Cetuximab combination/cocktail. This combo included the following drugs:
1. FOL = Leucovorin Calcium (Folinic Acid)
2. F = Fluorouracil
3. IRI = Irinotecan Hydrochloride
4. Plus the Cetuximab
By the way, I only know this information because of Sarah; if she weren’t with me during my appointments, I would remember nothing. I can’t talk enough about how important she’s been to me throughout this whole thing.
The major side effects from this new cocktail were the typical nausea and fatigue (which I had been experiencing for about 3 days post-treatment) and skin rashes from the Cetuximab. I wasn’t too concerned about the potential side effects at first, I had tolerated the side effects from my previous chemo treatments fairly well. Boy, would that change with this new stuff.
The treatment at Fox Chase was relatively uneventful; I slept the majority of the time because we made the drive from Lewisberry to Philadelphia at 3 AM to be at the facility for my 5:30 AM bloodwork. The side effects, from what I remember, from this first treatment weren’t too bad. I do remember feeling well enough to go trick-or-treating with my niece, Lucy, that evening.
(My niece Lucy and I trick-or-treating)
It was during this time that I made the decision to move from Philadelphia to the Harrisburg area, where I grew up. I was in such a funk, mentally, since the stage 4 discovery…I needed a change. I was no longer working at the time, so my days were mostly spent just killing time in our small, city apartment. I read books, I watched countless hours of tv, and I played too many hours of video games. What I wasn’t doing, however, was anything beneficial to my life. I was depressed. Moving home gave me the opportunity to lean on my family more than I ever have in my life. While Sarah would be working during the day, I could visit my parents, or my siblings…something I couldn’t do easily while living in Philadelphia. The move also provided a complete, and I mean 180-degree, change of scenery. Although it's grown since I was a child, the area where I grew up in Central Pennsylvania and the area of Philadelphia could not be any more different in terms of the amount of civilization. I loved living in the city; I had moved to New York quickly after college graduation, and Philadelphia then afterward. I had been living in a city for my entire adult life, but as a cancer patient, I needed more peace and quiet. I miss living in the city, but the cities aren’t going anywhere. And once we get through this, I always tell Sarah we will move anywhere we want, even if it’s a city; she’s made so many sacrifices to make sure I have the highest quality of life right now, she deserves the moon, and more. So, we moved to Mechanicsburg, PA, and so far, it has been great for my mental health. Sarah still goes back occasionally to Philadelphia for work, but she can at least either drive or take the train. Again, I am so thankful to her for giving me the best life possible.
Of course, the move meant a much longer commute to Basking Ridge, NJ than what it would have been from Philadelphia. It was a big change from the commute we were used to, in Philadelphia, to Cooper; that was like 7 minutes door to door! One of the blessings of Mechanicsburg, however, is that my mother has been able to take me to Sloan Kettering on days when Sarah has a work obligation. I’m blessed that my mom can take full-day excursions with me to New Jersey for treatments…I could never do the trips by myself! Perhaps the worst part about the move to MSK has been the commute, mainly, the drive on the way home. One of my least favorite activities has become the drive home from Basking Ridge after chemotherapy, wanting to throw up and feeling like general crap the whole way home. Plus, I’m generally so amped up on the steroids they give me during treatment, that sleeping is out of the question. I guess it makes getting home, and jumping into bed, that much sweeter.
(One of the great things about moving back home, has been hanging out with family more. Ryan and I at a high school football game)
Treatment at Sloan Kettering two weeks after treatment at Fox Chase. The chemo regimen given by MSK was pretty much the same as the one I received at Fox Chase, except my MSK oncologist changed from Cetuximab to Panitumumab (say that three times fast, let alone remember it). They are relatively the same drug with the same potential side effect of bad skin rashes. My first treatment was an evening session, I believe it started around 5 or 6 PM and did not finish until about 10:30 or 11…that was a long night. The structure of my treatment appointments at MSK was much different than what I was used to at Cooper as well. At MSK, I show up at the facility, have my bloodwork done onsite, visit with my oncologist, then proceed to the treatment floor. At Cooper, it was my responsibility to have my bloodwork done, so I was running to Labcorp every 2 weeks. I also did not meet with my oncologist at every treatment. We were meeting once a month…maybe. I value the regular appointments with my oncologist at MSK very much. There usually is a slight delay at the bloodwork floor when we arrive in Basking Ridge, but I’ll either take a little nap or read sports stuff on Twitter while we wait.
The chemo floor at MSK’s Basking Ridge facility is very nice; you get to sit in a comfy leather recliner, in a private little booth area. This differs from Cooper; at Cooper, you sat in an area with other patients, which wasn’t the worst thing in the world, it just made sleeping a little difficult sometimes. Cooper did have better chairs, though; not only were they comfy leather recliners, they had a heated seat and massage option. MSK’s chairs do have a small TV connected to them (like a first-class seat on an airplane). Here is my ranking of the chemotherapy floors I have had the privilege of sitting in, and a reason for the ranking:
1. Memorial Sloan Kettering Ridge, Basking Ridge (and NYC too!): comfy chairs, private treatment rooms, warm blankets and pillows provided, TVs on chairs
2. Cooper: comfiest chairs, semi-private treatment room
3. Fox Chase: chairs were okay, no TVs, open floor plan so it was difficult to nap
4. Andrews Patel (a place I go for fluids locally after treatment): chairs are somewhat comfy but it’s a small, open treatment room. No chance of napping
DISCLAIMER: All of these treatment facilities are wonderful places doing wonderful things for people. All of the chemotherapy nurses I have encountered have been fantastic, they all rank #1 too. I have also been going to MSK’s main campus in Manhattan sometimes for treatment, it rules.
Aside from the long commute, new treatment-day structure, and chemo regimen, everything else remained somewhat the same for a few weeks. I was tolerating treatment well, I was attempting to live a somewhat normal life and somewhat succeeding, and I was spending a lot of time with family…then as the holidays came around (Thanksgiving was about a month after my first treatment at MSK), things started to change. I was feeling nauseous for longer periods of time after treatment. I was having issues maintaining any sort of appetite, thus losing weight (the weight I couldn’t really afford to lose in the first place). I was feeling fatigued more often than usual. The side effects from chemo were really kicking my…butt. But the worst, and I mean the worst, side effect was the skin rashes I got from the Panitumumab. I won’t get into graphic detail, but my chest, back, arms, face, and scalp was covered in an awful skin rash for weeks. I was prescribed every lotion ever made…ugh it was terrible.
We kept rolling towards the holidays, however. There were small bursts of time when I felt well; we traveled to the Shenandoah Valley prior to Christmas for a weekend with Sarah’s family. Thankfully, I felt great all weekend and even went on a (very short) hike. Christmas weekend at my parents', though, wasn’t as lucky. I might as well have been a slug on the couch. The week of Christmas was a treatment week, and it took its toll on me. Christmas Day was a doozy too; I passed out in the shower, couldn’t physically open presents because of my “chemo hands” (Google it), hardly ate the delicious food because of constant nausea, and I slept on the couch for roughly 90% of the day. It was like a day in the life of an old basset hound.
At my treatment session before Christmas, my oncologist informed me that she wanted to have CT scans done to see how the treatment was working. We scheduled the scans for December 30th. Sarah was out of town at the time, so my older brother Chris took me to Basking Ridge on December 30th for scan day. Having the CT scans done is a pretty simple and quick process. After having your vitals taken and speaking with a nurse, you go into the CT room and lay in the machine while a technician hooks you up to an IV line. A neat trick I get is having my lines drawn through my chest port instead of my arms or hands, which is much easier in my opinion. They administer a contrast into the IV line which helps the CT scan machine capture tumors, lesions, spots, etc. The contrast, once in your system, makes you feel like you’ve wet yourself…it’s really an odd feeling. The imaging process takes about 5 to 10 minutes, then once completed, you’re free to leave. Chris and I feasted on Chick-Fil-A on the way home.
One decision I made that day was to hold off on receiving the CT scan results until my next oncology appointment, which was scheduled for January 4th. I did not want to receive my results over the telephone or spend the next few days staring at my phone waiting for it to ring. I couldn’t do that, I’d rather get the news (good or bad) in person. Plus, Sarah was still out of town and there was no way I was going to take that call alone at home! I spent New Years Eve with my twin brother Ryan, his wife Megan, and their daughter Lucy at their home. We watched college football, ordered takeout, and were in bed by the time the crystal ball started its descent. With Sarah being out of town, it was probably the best way to spend New Year’s.
On January 4th, my mom and I traveled to Basking Ridge for treatment day, and to receive my CT scan results. I remember saying to my mom as we departed my house, “it’s going to be a good day”. All I wanted to do that day was meet with my oncologist, get the results, have treatment, then come home and lay on the couch watching college football all night, feeling like crap. I was hoping for good news but I was also ready to accept “okay” news. News like, “the tumors haven’t grown but they haven’t shrunk, either.” I was optimistic but open to that “okay” possibility. By the time we arrived at the facility, my heart was in my throat. Bloodwork, of course, took forever. While we waited, I paced and paced and paced. Not a chance in Hades I was going to nap that day. The wait for the oncologist, of course, took forever. I sat in the patient room staring at the floor and tapping my feet fast enough to break the sound barrier. Finally, my oncologist walked in. Immediately I knew we were getting bad news. It was on her face, in her tone when she said hello…. I just instantly knew. I never could have predicted what she was about to tell me, though.
“The CT scan results were not good” is what she said. Not only had the tumors in my liver grown, but there were also now more. There were also two new spots on my lungs that they were concerned about. And to add to the fun, the tumor had reappeared in my colon. My initial reaction was a laugh…I let out a chuckle after my oncologist told me that news. I felt like, “You truly have to be kidding me”. Then, reality hit me like a wave and I buried my head in my hands. How did this happen? How does this cancer keep evading treatment? I cried, I couldn’t believe what was happening. I couldn’t believe that not only had my liver tumor situation gotten worse, but my lungs were also now in play, and just for the heck of it, the cancer in my colon decided to return. I questioned God a lot that day, more than I ever have before.
The most disheartening part of the day, besides the CT scan results, was learning I was no longer (at the time) a candidate for the HAI liver pump or for surgery. Both of those would increase my survival chances greatly, so learning they were not in the cards anymore crushed me. My oncologist informed me that I, obviously, would not be getting treatment that day because I was not responding to it. She was going to present my case to the Sloan Kettering tumor board the following day, to come up with a new game plan to attack my aggressive and fast-growing cancer. I was hysterical, none of this made any sense to me. I asked her, “should I start getting things in order?” Thankfully, she shot that question down, but that’s where my head was at. After about 30 terrible minutes with my oncologist, my mom and I left and departed on the 2.5-hour journey home. Thank heavens I did not have treatment that day because I slept the whole way home. I called Sarah, who was still home in Kentucky, and told her I needed her to come be with me. Because she’s the best, she abruptly left her family in Louisville and started the 8-hour drive to Mechanicsburg.
I got home and continued my nap. When I woke up, I felt a sense of calm. I had been given, about, the worst news I could possibly have been given that day. It was similar to the news I got in October, learning I was now stage 4. My ensuing depression and moping did nothing to help, the cancer had continued to spread. What good was it going to do me now? Plus, my oncologist was taking my case in front of Sloan Kettering’s best and brightest doctors. I trusted they would surely come up with a plan to beat this. I decided to give myself 24 hours to feel sorry and have a pity party, then it was back to life. Make no mistake, this was the lowest point of my life to date, but I wasn’t going to let it completely control me as I had back in the fall.
My mom and I met my brother Chris and his wife Ashley for dinner at a local diner. I even had an appetite that night, credit to the calm feeling I had that night. Then, everything turned upside down again. I received a call from Sarah, that she had tested positive for Covid! On the drive home from Kentucky! She had started to not feel well during the drive, so she pulled over. Thanks to a stocking stuffer, she had several rapid Covid tests on her, and of course, she tests positive for Covid. It was like a cruel joke was being played on us that day. I really couldn’t believe what was happening. As I said before, I questioned God a lot that day, more than I ever have before. We decided that Sarah would continue her drive home (she was pretty close) and I would go spend the next X amount of days at my parents until Sarah was testing negative.
The next day, my oncologist called with the findings from her session with the tumor board. I would be starting a new, third, chemotherapy regimen the following week, consisting of 3 drugs: Irinotecan, Avastin, and Oxaliplatin. I was thrilled to be getting off of the Panitumumab drug because the skin rashes had become completely unbearable. Oxaliplatin, which I’d been on before, could give me bad neuropathy, however. I felt like I had no choice but to be optimistic, try and keep my head down, and keep trucking.
By this time, I had started working part-time for my father’s small architectural firm, helping out with construction activities for the company’s active projects. While Sarah recovered from Covid and I was living with my parents, I spent a lot of time in the office. It helped me focus on something other than cancer shortly after receiving devastating news, again. Plus, the type of work is very similar to what I did before cancer. It has given me a sense of normalcy in my life…I’m very thankful and blessed to have this opportunity.
I will continue my journey in the next post, starting with my new treatment regimen and how I have been responding to it. I will try to get things up to date in my next entry. As I alluded to in my opening paragraph, I’ve hit a “cancer wall”. Over the past few months, I’ve really immersed myself in the cancer community and in my cancer specifically. We have been very active since my last blog entry, and we are working on some exciting things that I will get into in my next entry. As positive as all this has been for me, it does get a bit exhausting! Sarah and I spent a week visiting her family in Kentucky back in March. It was my first long-distance, more than a few days, trip since being diagnosed. It was refreshing to be out of town visiting family, doing fun activities, and not doing or saying anything related to cancer. I’ve also been working more lately, and as I said earlier, it helps me tremendously. Waking up every day and having a purpose for the day is so important, and that’s what work has given and returned to my life. So, lately, I haven’t been doing too many “cancer things”, and it's been good. I will get back into it, it's therapeutic for me. But right now, I am focusing on other things. I will get to my next blog entry soon, I promise.
This period of time in my life really, and I can’t emphasize really enough, tested my faith. I was angry with God. I questioned how He could let this happen to me. I thought He was in my corner; how can this keep happening with Him in my corner? I had prayed, and prayed, and prayed before my getting my results and I felt like it was for nothing. These feelings, like my initial hysteria, waned as well. I try to live my life as a good Christian and I speak with Christ and God often. What does this guarantee me? It doesn’t guarantee me perfect health, or a perfect life. The goal of my actions, I believe, is the guarantee of eternal life with Christ. Our reward is not a physical reward. It is spiritual and everlasting. And God is in my corner. Sure, I might take some direct hits to the face throughout my fight, but God is in my corner. He hasn’t abandoned me yet, and He won’t abandon me when my time comes. And that is true for you too.