Jeremy

Jeremy spent 22 years in the military and was physically active his whole life. He never expected to be diagnosed with cancer at age 43, let alone a rare disease no one where he lived knew how to treat.

I was in the Air Force and used to run 1.5 miles in under 11 minutes. I was fit and healthy. But sometime around my 38^thbirthday, I started getting tired and my blood sugar was weird. If I had a CT scan then, it may have been helpful. Instead, I was put in a sleep study, which showed I didn’t have sleep apnea, but still something was definitely wrong. Then I was sent to Iraq. When I came back, I found I was losing time on my running and still getting more and more tired.

I retired from the Air Force and about a year later I started having weird abdominal pains so went to the VA Hospital. They did a scan that showed a bladder obstruction that was causing me to retain urine, and a follow up CT scan also showed I had tumors, from my lower organs all the way up to my diaphragm, it was everywhere. They took out one the size of a walnut to biopsy and I asked the doctor if it was cancer. “I have no idea,” she said. “I’ve never seen anything like that before and won’t know until the report comes back from the pathologist.” 

My Blood was Boiling

Waiting was horrible. I remember sitting at home, not knowing when the answer was coming. A week later, the phone rang about 5 minutes after my wife had left and the kids were at school. It was the oncology section of the VA. I hadn’t even heard from my own doctor yet and here they were calling to say I needed to schedule chemo because I had some type of colon cancer.

Hearing the news was traumatic. I wasn’t grasping what they told me—I just sat there, panicking and didn’t want to call my wife to tell her over the phone. I felt like my blood was boiling. It was pretty stressful, even though I was suspecting cancer since they did take out a tumor. But I was always the healthy one, ate lean proteins, worked out, didn’t smoke…and now I’m the one with cancer? 

At any age, cancer is a freak-out. It sucks. In the time I had between being told I had cancer to being on my way to see the specialist, I had to be driven to the ER twice for panic attacks.  

Finding a Specialist

I saw the oncologist and got a colonoscopy and an endoscopy. They weren’t sure what I had and kept bouncing between diagnoses: colon, PMP (pseudomyxoma peritonei, an advanced appendix cancer which most people have never hear of), colon, then Adenocarcinoma, then PMP. At that time, I was wishing I had colon cancer because they knew how to treat that. They didn’t have a clue how to treat PMP. I started getting all of these crazy treatment recommendations from friends: eat lemon rinds, take caffeine enemas, everyone trying to cure me when we didn’t even know for sure what I had. I lost 15 pounds in those three weeks from stress and carving all sorts of things out of my diet. 

The VA was very helpful and gave me all sorts of resources for everything. I had to be referred to a doctor outside of the VA network and a surgeon and nurse advocate helped me find a PMP specialist. The specialist recommended cytoreductive surgery with inner-belly chemo—the mother of all surgeries. They gave me a 13-inch incision and spent seven hours inside my belly to scrape out the tumors; there were hundreds of them in there, enough to fill up over half of an ice cream container. A gruesome surgery; they took the organs out, cleaned them off, put them back in, sewed me up with tubes inside my stomach, one up top and another down the bottom of the incision, and then spent an hour washing hot chemo through me, unstitched me and rinsed out the chemo, then stitch me up again. I was under anesthesia for about 14 hours.

Passing Out From Chemo

I was in the ICU for a couple of days, then the hospital for another 12 days before I could fly home. It was brutal. My lymph nodes showed low and mid-grade cancer so they thought I should start chemo as soon as I was strong enough. When we did, it didn’t go well. I had an allergic reaction to the chemo causing me to go into atrial fibrillation and I passed out. The second time it happened, when I came to, I thought I was going to die and said goodbye to my wife, everything was fading out. At the hospital, they got me stable again, but each treatment was hard. I kept losing weight, going from 200 to 165 pounds, and I had an allergic reaction and black out a total of 4 times.

The chemo also gave me hair loss and neuropathy. I had chemo brain for sure; my wife got tired of repeatedly explaining stuff to me. I ended up with blood clots, mouth sores, diarrhea, and constipation. I’m still numb and tingly over a year later. They took me off that chemo and tried another one, an oral chemo—14 days on then a 7-day break. I thought it was better, but I was driving with my wife and kids in Colorado when I started to black out again. I would have driven us off a cliff if I didn’t slam on the breaks just before I blacked out again and my wife hadn’t thrown the car into park just before I started seizing.  

Against the Odds

Most people with my rare cancer don’t have a recurrence after surgery and chemo for five to eight years or longer, but I started getting pain again about eight months later. A scan showed that the cancer was back—the chemo hadn’t stopped it. I started another type of chemo and did 12 cycles and it only slowed the cancer down. The doctor treating me wanted me to do more chemo and wait another 6 months to see what would happen, but I found a different doctor to do a second surgery. He did the best he could but couldn’t get it all; my bladder was completely coated on the outside. I’m on a new drug now, it’s not designed to shrink anything, but helps slow down metastases. My scans have been mostly stable; there’s still a lot of cancer in my belly, but it’s not really growing.

Emotionally, it’s been tough. I was the alpha, at least in my own mind. My attitude was always “I can beat you at this”. I can out run you, crawl further, do more push-ups, march in the heat longer. I took being fit very seriously. Now I’m classed as permanently disabled, my stomach is all lumpy, and it feels like I’m 75 in a 46-year-old body. It sucks that I’m no longer the physical man I once was. I’m not part of the working loop either, so friends sometimes forget about me. I’m glad I have my wife and kids and am not by myself, because that would make it even harder. 

Being young and having this rare cancer is very isolating. I went to cancer support groups but everyone else was much older and I felt like I couldn’t be part of the group. There’s a PMP support group on Facebook where I can post and get feedback. It’s not as isolating when someone else has the same thing and I can talk to them. But the folks who are doing well are not communicators, so I tend to talk with those who aren’t doing well.  

Military Tactics

Nothing prepares you for cancer, but my military training helped me get the treatment I needed. When something was denied, I’d submit an appeal and call the senator to get things approved. No one is going to tell me “no” without telling me why. If I had stuck with the no answers, I would probably be dead already. When I was first told by the specialist that I had a 50/50 chance of living 12 more years, I was not happy; it would’ve barely gotten me to age 55. When it came back, all I thought was, this is some BS, what do you mean it’s back. Data I read showed that when it comes back in less than a year, about 80% of patients die in less than five years. I already had the one-in-a-million cancer, already had the reoccurrence, so now what? I was supposed to have another 11 years. To hear that medicine is failing me again is devastating.

I’m still uncomfortable every day, from my diaphragm down to my pelvis. There are days I wake up hurting, so I pop pills and think about one thing I want to do today. When I’m miserable I take morphine, but not until I absolutely need it. I’ve learned I don’t have to beat cancer, just get through it. I’m not giving up, I’m just being realistic. Because my cancer came back, I’m going to die long before I reach 80. I’m trying to figure out how to get to 55 to see my kids through college, but don’t want to die then either because my wife would be all alone and I want to grow old with her.

Just as Hard

I don’t know how my family is going to be cared for when I die. I was able to show that radiation and chemical exposure in the military probably led to my cancer, so now I get VA disability pay in addition to military retirement benefits, which is enough so my wife could quit her job to be my caregiver. Over the years I’ve been trying to teach her how to do things I have always done. Now, she won’t even let me mow the lawn, she’s really cautious with what I get to do, so I do what I can. It’s just as hard on her as it is on me.

I don’t dwell on death as much as some people in my situation, but it definitely crosses my mind every day. I’m in no hurry to die. I’ve got guns but have no intention of using them—suicide crosses my mind but is not the answer. Still, on really bad days I sometimes think I’d rather die than do another day of this crap. I want my old self back, but that’s not going to happen, so I just have to deal with it. I’m not ready to give up but I am scared. My life isn’t over but the reality of knowing nothing is going to stop my cancer does mess with my head. In my mind, I’m just not a cancer patient; I’m a husband, father, son, grandson, brother, uncle, cousin, and friend who just happens to have cancer. So, I’m going to try to enjoy my time as much as possible.