Why I Will Lose My Fight Against Cancer

          Many people don’t like the phrase “(So-and-so) lost their fight with cancer”. They want to say cancer never wins. Sometimes it doesn’t. If you’re lucky enough to catch it early, and get good medical treatment you can beat it. For those of us who aren’t lucky like that, cancer will win. It’s just that simple. What bothers me is the idea that if you lose the fight you’re a loser and a failure. That’s just not true- just ask the Spartans about Thermopylae. Losing isn’t always failure. If a baseball player “fails” to get a hit 7 out of 10 times, he’ll end up in the Hall of Fame. I believe that even if you know you’re going to lose a fight, that doesn’t mean the fight isn’t worth fighting. Sometimes knowing you’re going to lose, the fight becomes more important, and the reasons to fight become clearer. I have stage IV colon cancer and I fight every day.

I fight because I want to live.

I fight for my wife.

I fight for my family.

I fight because I want to see Paris again.

I fight because it’s a fight worth fighting.

                                    I fight because I want to live.

There will come a time when my fight will be over; when I will lose the fight. For me, that’s inevitable. I’m okay with that- or as okay as I can be. Don’t get me wrong I’m not happy about it. I’m sad and mad about it on a daily basis. I look at it like Rocky Balboa did in the original Rocky. Near the end of the movie, the night before the big fight between Rocky and Apollo, Rocky and Adrian are in bed, and Rocky tells Adrian that he knows he can’t beat Apollo. She tells him that he “worked so hard”, and he tells her that it doesn’t matter. Then he says:

      …'Cause I was thinkin', it really don't matter if I lose this fight. It really don't matter if this guy opens my head, either. 'Cause all I wanna do is go the distance. Nobody's ever gone the distance with Creed, and if I can go that distance, you see, and that bell rings and I'm still standin', I'm gonna know for the first time in my life, see, that I weren't just another bum from the neighborhood.

            That’s what I plan to do with cancer- go the distance. The difference between Rocky’s fight against Apollo and my fight against cancer is that people fight cancer every day. I just want to add my name to the (unfortunately) ever-growing list. While I won’t be physically standing at the end of the fight,

I’ll know I’ll have given it everything I’ve got.

I’ll know.

My wife will know.

My family will know.

The cancer will know.

            

 Stuart Scott, the ESPN anchor who died of cancer of the appendix said, “You beat cancer by how you live, why you live, and the manner in which you live.” Just because I’m going to lose my fight against cancer, that doesn’t mean I failed or a loser, and it doesn’t mean that it’s not a fight worth fighting.           

Back To The Beginning

So the PET scan last September showed 2 lymph nodes in my retro peritoneum starting to exhibit signs of metabolic activity. In other words, the cancer was starting to grow there again. These lymph nodes are located about 2 inches below my sternum towards the back of my torso. The good news was they were not near any major arteries or organs. The bad news was these can’t be gotten to surgically. With my CEA also slowly rising- it was up to 2.4 at this point- my oncologist put me back on full chemo. This consisted of Vectibix with Irinotecan. My treatment schedule was 3 weeks on and one week off. This was brutal because the Irinotecan added a whole new set of side effects in addition to the Vectibix side effects. The biggest of these were GI complications and even greater fatigue. The three weeks in a row had me out of commission for 4-5 days each of those weeks. It was getting to be a bit much. On top of that my CEA was still slowly, but surely climbing. By the time it hit 3.0 in December, my oncologist ordered another PET scan. This time there was only one enlarged lymph node in my retro peritoneum, but it had grown and was fully metabolically active. Also, there was a new lesion on my liver. We immediately stopped the Vectibix and Irinotecan and went full Vizzini from The Princess Bride; when things wrong, you go back to the beginning. For me, that meant going back on Folfox (Oxaliplatin, Leucovorin and 5FU).

In the good news/bad news reality that is chemotherapy, the rash, splitting skin on my fingers and infected nails would go away since I’m off the Vectibix, but constipation, greater nausea, thinning hair and cold sensitivity were next up from the Folfox. I still had to be on the steroids and antibiotics that were helping with the Vectibix side effects for another 6 weeks, but then I could stop the antibiotics, and start to wean my way off the steroids; that should lead to me losing some of the 20 lbs. I put on while taking them. Of course losing weight as a cancer patient can be unsettling because it’s a good indicator that the cancer is growing. My oncologist told me that I should lose the weight I gained while on the steroids and be back at my old weight with no worries. If I got below my weight prior to the steroids, then it would be time to worry.

This new treatment meant the return of the hated 5FU pump. After my infusion in the office I was sent home with a pump attached to the port in my chest that has the 5FU in it for 46 hours. Then I went back to the office to get disconnected. The disconnection has the effect of air being let out of a tire. The physical exhaustion can be overwhelming. Another “plus” of Folfox is that the treatments are every other week, so I hope I’d have more time and energy to do things. I was scheduled to get 4 sessions of this treatment, and then have a CT scan to see if the lymph node and liver lesion had shrunk, or hopefully, been eradicated. If it worked, we would keep going with either more treatment (if it only worked partially), or maintenance, if the cancer were eradicated.

I didn’t make it to the fourth session. By the third treatment, my CEA had gone up to 6.8. Seeing this my oncologist ordered the CT scan early. Again we had good news/bad news. Good news- the lesion in my liver was gone. Bad news, there were more lymph nodes that had grown in my abdomen and now there were 3 nodules in my lungs. Here’s some irony; they could get rid of the lesions in my lungs with RFA like they did a while back for one in my liver, but, in order to do it the lesions have to be at least 1 cm, where the biggest one was only 7mm. The lymph nodes in my abdomen are bigger than 1 cm, but they’re in a place where they can’t get to them. er’s some ironySo for them to help me with the nodules in my lungs my cancer has to get worse.

All this was incredibly disappointing. I didn’t stop Folfox four years ago because it stopped working, I stopped it because I became NED and we wanted to have this in my back pocket so when all other chemo options stopped working I could go back to it. Unfortunately the latest recurrence was resistant to my back-up plan. Pretty devastating news. My oncologist said I should try Lonsurf, which is a chemo pill. I am wary of chemo pills since my Adventures in Xeloda in 2015. However, I was assured that Lonsurf doesn’t have the same side effects as Xeloda, and from what I’ve heard it’s supposed to be one of the “easier” of the chemo regiments as far as side effects go. I hope so. I also hope it works, because with each new chemo treatment I don’t know if it’s going to be effective or not, and I’m running out of options. I’ll be on these pills for 3 months and then another scan. The oncologist told me that I shouldn’t expect to see any positive results for 2 months. Time to get serious about looking for clinical trials. First up, an appointment at Moffitt Cancer Center in Tampa this Friday to see what they have to offer. It’s all a lot of wait and see. 

Part 13: The 2nd Coming (Recurrence)

            So the cancer came back again. My “break” which was filled with pericarditis and hernia surgery turned out to not be such a break, and now while I was recovering from both of those, I had my second recurrence. I was immediately put back on full chemo- Ironotecan with Cyramza for three months. My schedule of treatment was three weeks on and then one week off. It sucked! What sucked even more was that it wasn’t working. My CEA was steadily climbing; at the end of May 2017 it was 8.2, and by August 16^th it had risen to 46.9. My number hadn’t been that high since June 2014! With the CEA trending upward it was clear that my cancer had grown resistant to the Cyramza, so my oncologist changed my cocktail to include Vectibix in place of Cyramza. Good news/bad news about the Cyramza being gone. Good news: no more excessive flatulence! I enjoyed that going away as I was never one of the “pull my finger” crowd, and the amount I was farting went from embarrassing to comical and back a few times over. Bad news: that drug, and the others in that family are no longer viable treatment options for me anymore. This is scary because there are a limited number of treatment options out there and this one was just scratched off the list for me. In addition, there is no guarantee that the other available drugs will work. Eventually the cancer will grow resistant to all the treatments, and I’ll die. But as Arya Stark would say, “Not today!”

            Starting a new treatment is always nerve wracking (as if having Stage IV colon cancer wasn’t nerve wracking enough) because you never know if the new treatment will work. So we started with Ironotecan and Vectibix. Good news/bad news about Vectibix. Good news, after the first treatment the number dropped from 46.9 to 21.5. It was working! (insert Snoopy ‘Happy Dance” here) Better news: it continued to work and the number continued to drop to the lowest levels I’ve ever had on a consistent basis, <.5. Bad news: when Vectibix is working you get a nasty, itchy pimply rash. I had acne in high school, but it wasn’t nearly as bad as this. It covered my face, neck, scalp and torso fully, and went lightly down my arms and legs. The oncologist gave me Doxycycline, which helps with the rash not getting infected, and Prednisone, which helps the itching- most of it anyway. Sun, heat, and sweating all aggravate the rash and itching, and it’s hard to avoid heat here in south Florida- thank G-d for air conditioning! The rash is uncomfortable and ugly. A side effect of a side effect is the 15 pounds I’ve gained from the Prednisone. One odd side effect is super eyelash growth. My eyelashes grew so much that I had to ask my wife to trim them multiple times because they scrape against my eyeglasses and smudge them. The lashes on the outside were so long, they were touching my eyebrows. Yet another odd request for a spouse/partner brought to you by the cancer/chemo experience, ”Um, sweetie, would you mind trimming my eyelashes for me?” I’ve always had long eyelashes; I’ve been lucky in that- now they’re crazy! 

            In addition to crazy eyelashes, my nose hair grew coarse and out of control, but luckily my beard trimmer has a nose hair trimmer attachment. While I have the rash on my face, neck and torso, the skin on my fingertips have become dry and they would split open without warning. Imagine getting paper cuts without touching any paper. The skin on my fingertips has changed so much the fingerprint ID on my phone doesn’t recognize my thumb.

            After four months of the new treatment, and shrinking numbers I had a PET scan. The CEA by that time was well below the NED (No Evidence of Disease) threshold. In the past when my number was down that low I was NED- even if only temporarily. Not this time. The PET showed there was still one lymph node behind my stomach that was enlarged, but not active. It was dormant. My oncologist said he doesn’t like dormant, he likes eradicated. The analogy he used was that there was a bear in a cave and it was sleeping. It will eventually wake up. I replied, “Let’s go kill the bear.” I would have three more months of treatment and then another scan. March 2018, was time for that scan- this time a CAT scan. Good news: the lesion shrunk even more- from 1.9 cm to 1.6 cm. Bad news: to be considered NED (and to have killed this bear) the lymph node had to be 1.5 cm or under. The oncologist was happy- “It’s still shrinking,” and then ordered two more months of treatment. We’ll have to wait and see what the scan shows after that…

Part 12: Give Me A Break!

          February 15^th, 2017 was my last maintenance chemo. I was officially in remission and NED (No Evidence of Disease). A brief note about being “NED”; there is no cure for Stage IV colon cancer, it’s considered treatable, not curable, and is treated like a chronic disease. Even though there is “no evidence of disease”, since the cancer spread from my colon to another organ (my liver) there would always be cancer cells in my blood that will eventually land somewhere and start growing again.  So while there is no “evidence” of disease, there are still cancer cells floating around my body. Once again I’m lucky in an unlucky situation as it’s rare to get to be NED, and rarer still to stay there. At that time my CEA was 1.2, my scans were clean and my oncologist gave me the best news since my diagnosis- I was getting a break from chemo! This was my first break from treatment since I started chemo back on April 21, 2014. From now on I would have blood drawn to check my CEA and my port flushed every six weeks, with scans to get an updated look every three months. As long as my CEA stayed below 2.5 and nothing new showed up on the scans, I would continue to not need chemo. I had been in remission before, but my numbers started rising while doing maintenance chemo and I never got to have a break. Obviously I was looking forward to this!  I was hoping to have surgery for an incisional hernia I had developed in my stomach where I had my colon resection and then start exercising and get back into some semblance of (better) shape.

            
          About a week into my break I started having pressure and severe pain in my chest. When I called and asked, my oncologist assured me that this was not a side effect from the chemo, and said I should check it out with a regular Dr. I have Gastroesophageal reflux disease (GERD) from before I had colon cancer (ah the good old days when migraines, GERD, and flat feet were my biggest medical worries!), and the pain and pressure felt similar to those I had when I was first diagnosed with GERD so I made an appointment with my GI Dr. He said this wasn’t anything associate with the GERD and I should go see a cardiologist. So off I went to see a cardiologist. The cardiologist immediately sent me to get a CAT scan of my heart to make sure I was in no danger of having a heart attack. The results came back negative, and he told me the chance of me having a heart attack was 1 in a million.  I was very happy to hear that because the pain was so intense at times I thought I *was* having a heart attack. During this time, there were nights where I slept on the couch because I was afraid I would have a heart attack in my sleep and I didn’t want my wife to wake up next to a dead me. After a more complete exam the cardiologist told me I had an acute case of pericarditis; inflammation of the pericardium and build up of fluid around the heart. He put me on 2 types of medication and told me he wanted to schedule an echocardiogram to be thorough, and make sure there wasn’t anything else wrong. A week later I was back at his office, getting an echocardiogram by the Dr.’s assistant.

That evening at about 11:30, as I was driving home from a bi-weekly Dungeons & Dragons game I play in, I got a phone call. I didn’t recognize the number so I wasn’t going to answer it, but then I thought, “It’s late, I wonder who that is…” so I picked up. It was the cardiologist. Instantly I knew something was wrong- no Dr. calls you at that time of night with good news. He asked me if I was able to go to the ER immediately- and not just any ER, but a specific hospital that has a special cardiac unit. I asked him why, and he told me something looked suspicious on the echocardiogram. He said there was a chance my aorta was leaking, and that was causing the pericarditis. If that were the case I would have to have open chest surgery so they could close the leak- sew up my aorta. He wanted me to get another CAT scan of my heart- this one to specifically look at my aorta and see if it was actually leaking. If it were I’d be admitted to the hospital right then and there and be scheduled for surgery. I asked him what the chances were that my aorta was leaking, and he said 5%. This got my heart racing since he told me the week before that my chances of having a heart attack were 1 in a million. 1 in 20 does not feel as safe as 1 in a million!   To my own surprise I didn’t really panic. I guess after a couple of years of dealing with colon cancer and the fun times it provided on a daily basis, this was just one more thing. I got home, said hello to my wife, and then told her we have to go the ER. I told her why, and that’s when I had a 42 second breakdown. I cried, and cursed, and then we left for the hospital. My wife was (and continues to be) a rock.

We got to the hospital, and checked into the ER. Luckily we didn’t have to wait long for the scan, which was quicker than the scans I usually had. This makes sense since they were only looking at my heart this time, not my pelvis, abdomen and chest. The results of the scan showed that my aorta was fine, and I was told I could go home and relax. So we went home, and I was able to relax- with the help of Xanax.

I stayed on the pericarditis medications for another 5 weeks, and it slowly got better. I had to stay on the medication even after symptoms were gone because of the risk of it recurring. By the end of April I was finished with the drugs, and then it was time for me to get my incisional hernia repaired. I had developed it around September 2016, right above my belly button. It’s a strange thing to see your intestine bulging through your abdomen, and when you push it back inside it makes a gurgling sound and creates a strange sensation that is difficult to describe. So in the beginning of May I had my hernia repaired. The surgery was successfully done lapriscopically and the recovery was more painful than I thought it would be. The week following the surgery it was time to get my CEA checked. It had gone up the last 2 times, from .7 to 1.2. to 3. When they checked it this time it was up to 8.2. The oncologist ordered a scan and wanted me to start full chemo again the next week. When I told him I had surgery the week before, he begrudgingly put off the treatment for an extra week. The chemo I was going back on lowers your platelet count, weakens your immune system, and causes you to heal slower, so you need 2 weeks off after surgery. When the scan results came back I had 2 new lesions in lymph nodes that were behind my stomach. Another recurrence. Seems I couldn’t really get a break after all…