The Waking Nightmare

Written by:
Joel "Thor" Neeb

In February of 2010 I was diagnosed with Stage IV cancer and I was given a 15% chance to live 5 years. At the same time, a tumor was discovered in my three-year-old son’s lung. This was the most horrific period of my life and also the turning point for everything that was to follow. This is part 3 in a 5 part series that chronicles our journey. Parts 1-4 can be found at Ashes To Iron.

Thursday, February 11th, 2010

Once the anesthesiologist hooked me up to the nerve block last night it was like I never even had surgery. I didn’t fully understand it, but it sounded like they basically short circuited my nervous system on both sides of my abdomen so I couldn’t feel the surgical trauma. I could have taken a punch to the gut and I probably wouldn’t even notice. I don’t remember much after I came to in the recovery room. When I woke up in the morning Marsha was at my side.

Dr. Connaughton came by to give me a report on the surgery from the day before.

“The surgery went well, Joel, but it took a lot longer than expected. You were back there with us for about eight hours,” he said. It was only supposed to take about four hours. “I found the tumor pretty quickly. It was a little bit bigger than a racquetball, and it was squished flat against the other organs in the area.”

“I removed the tumor and about ten inches of your intestines. Then, Dr. Weld stepped in and removed about 25% of your bladder. We looked around your insides and took out about 25 lymph nodes, too. We do that to see if the disease has spread.”

I think I caught an ever-so-slight pause before he said the word “disease”. “So, do you think it was cancer?” I asked. Marsha was sitting next to me and I still hadn’t told her about the conversation that I had with Connaughton right before surgery.

“Actually, I’m not sure. We will have to wait until pathology is done analyzing the tumor.” He paused. “Your appendix looked really abnormal, though. I removed that too. If there was cancer, it may have come from there. Because of the…bizarre… appearance of your appendix, Dr. Weld came back in and removed a bit more of your bladder, too. That’s what took so long.”

I was elated. So the infamous cancer blood test might be wrong! And if it was cancer, it might just be in my appendix. That sounded about as threatening as having cancer in my pinky toe.

“That’s great!” I said. “And if the cancer was in my appendix, perfect – who needs an appendix, right? Problem solved!” This was the first piece of good news I had gotten in what felt like a long time. I was due.

“Well…we’ll just have to wait and see,” Dr. Connaughton didn’t appear to share my enthusiasm, but then again I think this guy could look depressed at a carnival.

I stopped him as he got up to leave to ask him one more question. This morning I had sheepishly peeked under my covers to see if I had the infamous “sternum to nuts” zipper scar that Coke had warned me about. But when I looked the only thing I could see were bandages across my entire abdomen, so there was no telling. “How big was the incision that you made for the surgery?”

He looked up and considered the question for a moment. Then, he closed his left hand around the bottom of his right forearm to measure the circumference. He held up his left hand and showed me the distance between his thumb and middle finger. “About that big,” he said.

Great. So apparently old Doc Connaughton had been elbow deep in my abdomen. That was a visual I could have done without.

Friday, February 17, 2010

Yesterday I got to leave the hospital. It had been a week of many highs and surprisingly few lows. We were still waiting on pathology to come back with the results of the tumor analysis, so I was able to just focus on healing from my surgery. Each day we celebrated another milestone. Day 1 after surgery I was able to get out of bed and walk around my room. By Day 2 I was doing laps around the floor of the hospital. On Day 3 I slowly began to re-introduce liquids back into my body as my digestive system healed from the parts that were removed, and just before I left the hospital I ate solid food again for the first time. It felt great to see the progress I was making. I really enjoyed the time with Marsha, too. It had been such a whirlwind of activity the past few weeks that I appreciated the mandatory downtime in the hospital bed.

When I left the hospital Dr. Connaughton told me that he would contact me as soon as he knew my official diagnosis. The call came this morning.

He got right down to business. “Joel, it appears that my hunch was unfortunately correct. Pathology came back with the results of their tumor analysis. You’ve got Stage III Mucinous Adenocarcinoma of the appendix. It’s Appendix cancer.”

So there it was. It was shocking to finally hear that I had cancer, but I was hopeful to hear that it was in an organ as useless as my appendix (though “Stage III” sounded pretty scary). “But you got it out, right? And it’s just cancer that starts in your appendix, so it can’t be that bad, right?”

“Appendix cancer is extremely rare and extremely serious. We checked the lymph nodes that we had removed and 3 of the 24 tested positive for cancer, which means it’s spreading,” he paused for a moment. “You’re not going to like this next part. I have to go back in through my original incision and remove about half of your intestines.”

“WHAT?? I thought you got it all out?! Why would you have to remove half of my intestines?” Between the bomb he dropped on me with the cancer blood test and this new piece of information, I was really beginning to despise talking with this guy.

“It’s a preventative procedure, Joel. There will be some… lifestyle changes… if we do this.”

What, like I’ll have a new butthole in my armpit? No thanks. “Doc, this is blowing me away. I did research on appendix cancer and I couldn’t find anything that said to go back in and remove half the patient’s intestines.”

“Well… I can be convinced not to do this procedure,” he said slowly. Why was he suddenly backpedaling? Did I need this life-altering procedure or not?

“You. Can be convinced. NOT to do a procedure to remove half of my intestines, merely because I started asking you questions about it. What’s going on here, Doc? How many of these cases have you treated?” I already knew the answer.

“Actually, I think you’re the first case ever in the Air Force,” he admitted.

“Well, Doc, you’re not cutting your teeth on me. I want to go to a doctor who specializes in this,” I said with conviction.

“I can support that,” it was the first smart thing he’d said in a while. He sounded a little relieved.

I hung up the phone and immediately called Coke. “It’s cancer, Coke. Stage III. It was in my appendix. Mucinous Adenocarcinoma.”

He sighed and was quiet for a moment. “Well I guess I’m happy it’s not Stage IV,” he finally said.

“That’s what I thought, too,” I said. “Dr. Conaughton said that it’s pretty serious and that it has already spread to my lymph nodes. I’m still glad it was in my appendix and not colon cancer or stomach cancer or any one of the other terrible cancers that I had read about and was dreading.”

“Yeah…” He didn’t sound as encouraged. “I do have some good news for you, Thor. You know that bitchy surgeon that’s supposed to do J.J.’s surgery?”

“Yeah, of course.”

“I put in a referral for you to find another doctor. Pick out any one you like in Texas. But do it quick before she gets wind of this and raises a stink.”

“You rock, Coke!” Coke to the rescue once again. I was so relieved – there was no way we could have trusted J.J.’s life to her. “Thanks, bro,” I said smiling.

“Any time.”

I enjoyed a moment of good news and then got somber again. “Well, I’m going to go research my cancer and find out what I’m up against.” We said our goodbyes and hung up.

I got on the computer to learn about my cancer. It finally had a name, and it wasn’t one I had ever heard about or read about before – Mucinous Adenocarcinoma.

I quickly found a website dedicated to my cancer and skimmed the page. As I read my hands started shaking and I couldn’t catch my breath. It was more horrible than anything I could have ever imagined.

Friday, February 19, 2015

I’ve heard that people with terminal diseases will often say that the moment they wake up in the morning is their favorite part of the day. In the delirious space between their dreams and reality they no longer have cancer, and for a brief time everything is as it should be. They live for that one fleeting, daily glimpse into a life that no longer exists.

Not me. Waking up is the absolute worst part of my day. Every morning when I wake up, in the seconds before I am fully lucid, I have a momentary wave of relief that it was all just a dream. I don’t have cancer. J.J. is not going to have most of a lung removed. I’m a strapping fighter pilot and my family is the picture of good health. It was all just a nightmare.

And then slowly, cruelly, reality creeps in.

There are too many details that I remember for it to have been a dream. I talked to an appendix cancer specialist in San Diego on the phone yesterday. He said at best I had a 50/50 shot of making it through this. My son is going to have surgery in a few days – we met the surgeon yesterday. I’m not waking up from a nightmare. I’m waking up to one.

I spent the past few days researching my cancer hoping to find some semblance of hope. Every page said the same thing. The survival rate for appendix cancer was very low. Unlike most cancers that spread through the lymphatic system, this cancer spreads to neighboring organs by contact. The tumor secretes a material called “mucin” that sends cancer cells everywhere throughout the abdomen.

I imagined my racquetball-sized tumor and everything that it must have touched in my abdomen. There’s no way the doctors could have removed all the tissue that it was in contact with. Even if they did, it could still spread to the abdominal wall, and once it does that it goes everywhere. Then your abdomen continues to fill up with mucin until your digestive organs are crowded out. When they stop functioning you slowly starve to death.

And the treatment may just be worse than the disease. The only surgical approach that’s moderately effective for Mucinous Adenocarcinoma has been dubbed The MOAS by the other appendix cancer patients, which stands for “Mother of All Surgeries”. I read the medical description of the surgery in utter disbelief:

“The incision is made longitudinally across the patient’s abdomen, from sternum to pelvis. During the surgery, the gall bladder, spleen, part of the small intestine, part of the large intestine, and the inner lining of the abdominal wall are all removed. The remaining organs are individually rubbed with a grating tool to remove the outer cellular layers as well as any lingering mucin. Next, chemotherapy solution heated to 109.4 degrees F is poured directly into the abdominal cavity. The heated solution is left in the abdomen for approximately 90 minutes. The entire surgery lasts 14 hours.”

This can’t be a real medical procedure. This is from a horror movie. The surgeon removes as many organs as possible, leaving the patient with the bare minimum to stay alive, and then “grates” the outer surface of the remaining organs away like a lemon zester? Then they add a bucket of scalding hot chemotherapy soup to sit in there for 90 minutes? This is a joke.

But it’s not. Each new web page I click on only serves to confirm the horrors of this cancer. Even after the “Mother of All Surgeries” is complete, the survivability is still very low.

My nights are spent lying awake reflecting on my life, on my family. My five-year survivability rate is so low that I should just assume that I won’t make it until then. But if I could just survive those five years. I envision holding out until 2015. J.J. would be 8, and Jace would be 6… J.J. would probably remember some good times with me, but Jace would most likely only have a vague memory of a sickly dad in his childhood. Those will be tough years for Marsha taking care of me. I pray for morning to come and push these thoughts away.

I spend my days in a state of delirium from stress and lack of sleep. I can’t be left alone with my thoughts, and I follow Marsha around the house like a puppy. I look for any distractions to allow my mind to focus on something else, even for a moment.

Every Friday night J.J. and I watch a movie, usually The Lion King. Every time we’ve watched it in the past I’ve fast forwarded past the part where Simba’s father dies. I thought it was too much for a little boy to handle.

Tonight I let the whole movie play through, and J.J. sees Mufasa’s true fate. I figure that I don’t have the luxury of protecting him from the hardships of life anymore. After the scene ends, he is confused and questions me. “What happened? Why did the Daddy die?” I hope he can’t see my tears in the glow of the television light.

That night, I stand in J.J.’s doorway and watch him sleep. I wonder if one or both of us will be gone soon.

I push the thought away angrily. It doesn’t matter. None of this is real. This is all just a dream. It’s a nightmare. Why can’t I wake up??

Wednesday, February 23, 2010

Today is J.J.’s surgery. We talked to him about the procedure last night. Marsha and I sat him down and told him that he had an “owie” in his body and that a doctor had to cut it out.

It definitely helped that I had just had surgery myself. I was recovering quickly, and J.J. got to see me back on my feet again (most of the time). He was still concerned about the whole “cutting” piece of this process.

“But you don’t let me touch knives. Cutting hurts,” he said.

“I know, bud, but this doctor is trained to use the knife to make a small cut, and take out the owie through the cut,” I had a brief vision of Dr. Connaughton illustrating the size of the incision he made on me by implying that his entire forearm had been inside my abdomen. I force it out of my mind.

J.J. had one stipulation for the surgery. If he had to face someone cutting him with a knife, he insisted that he wear his Superman costume to the hospital. Marsha and I smiled at each other for a moment and then she ran off to grab the outfit for him.

The Superman costume made regular appearances around the house. J.J. would put it on at least once a week and wear it for the entire day. In J.J.’s eyes, there was only one problem with the costume. In the Superman movies that J.J. loved, the hero always wore what looked like red bikini briefs on the outside of his blue pants. J.J.’s costume didn’t come with those red briefs. No problem. He wore his underwear on the outside of the costume.

Of course, he wore the full outfit to the hospital this morning, complete with a pair of Underoos worn on the outside of his pants. Marsha and I laughed uncontrollably as he darted in between people with his arms outstretched, cape billowing behind him. Everyone that saw him did a double take and shared in the joke as they realized why his underwear was on the outside of his pants.

When we got back to surgery prep we were no longer laughing. This had been much easier when I was the patient. They made him take off his Superman costume and put on a gown. He was very concerned when they put in the IV, but he made a point not to cry. He looked so little in the big hospital bed. I wanted to switch places with my son so badly.

“It’s time,” the anesthesiologist told us.

“J.J., buddy, it’s time,” I said. “Are you ready, big guy?” Smile. Keep it together. Don’t let him see you losing it.

“Yup,” He looked up at us.

The anesthesiologist leaned in and whispered to Marsha and me. “Now, when I administer the general anesthesia he may have a…negative… reaction.”

“What do you mean?” I asked. I’d never heard of anyone having a negative reaction before.

“Well, usually everything is fine, but once in a while, a child will panic as the anesthesia sets in. It can be a bit confusing, and I don’t want him to fall off the table. Dad, I’m going to need you to hold him down.” The anesthesiologist told me.

Hold him down? “Okay,” I said uneasily, and then turned toward J.J. “J.J., bud, we’re going to give you some special juice now, okay? It’s like Superman juice. It is going to make you sleep and help the doctor to take out the owie.”

“Okay,” J.J. wasn’t concerned at all.

The anesthesiologist began to deliver the sedative, and I gently put my arms around J.J. to be ready in case he panicked. Sure enough, as soon as the chemical wound its way through the IV cord and into my son his arms began to jerk upward against me.

“Easy, buddy! Everything’s ok!” I said. Why couldn’t anything be simple anymore?

“Joel, let him go!” Marsha said. “Look! He’s…flying.”

Marsha was right. His arms weren’t coming up out of panic. As the Superman juice entered his system his arms began to rise so he could fly, and he had a faint smile of delight on his face as he drifted off to sleep.

Wednesday, March 2, 2010

J.J.’s surgery went well, but the days that followed were tough. Apparently, kids don’t get painkillers after surgery like adults do. Something about the drugs being dangerous for their little bodies. So, while I had a nerve block and enough pain killers in my body to buzz a horse following my surgery, J.J. had to endure his entire recovery with only Motrin to ease his pain. Motrin. The same drug that barely works for a headache.

In the days following the surgery, J.J. was in the ICU. I would come visit him as much as I could, but because of my recent surgery and compromised immune system, the hospital staff didn’t want me spending much time there. I am ashamed to say that a part of me was glad to be shooed out of the ICU. I couldn’t bear to watch my son in pain.

When he isn’t in pain, he is wheezing for air, struggling to fill a lung that is no longer there. It physically hurts me to see him enduring this, and it only makes me madder at our shared situation. This shouldn’t be happening to us, I think for the millionth time in the past few weeks.

Marsha, however, is a rock. She has stayed by his side from the moment he got out of surgery. There hasn’t been a second that she failed to display confidence and support for him. She rubs his forehead when he moans and cries. She makes him do exercises that the doctors say will strengthen his remaining lung capacity. I am literally astonished. This is the same meek girl that a few weeks ago would have called me with concern if something spilled on her purse. She is amazing, and I am humbled by the depth of her strength.

J.J. has come home now, and he is recovering quickly (faster even than I did). Together we walk laps around the kitchen, which the doctors say will help our wounds to heal. We will know whether his mass was cancerous or not when the pathologists are done examining it, but our surgeon is betting that it’s not cancerous. Finally, some good news. If it’s true.

After J.J.’s surgery, I spent some time trying to figure out next steps for my cancer. We found a hospital for me to go to in Houston. M.D. Anderson is supposedly one of the best cancer treatment centers in the world, and they have a specialist for Mucinous Adenocarcinoma.

Today, we are going to Houston for our first visit to the doctor.

I got everything I could have ever asked for in my treatment – a doctor that is not only a specialist but world-renowned in the field. We are only a few hours drive from the hospital, and I can conveniently come here for all of my care. So why do I have this horrible feeling of dread?

The entire drive to Houston it consumes me. I had already seen many oncologists, and they were amateurs compared to the ones I would meet at M.D. Anderson.

So why am I so anxious about this trip?

I don’t say a word to Marsha on the long drive. Several times I have trouble catching my breath.

We arrive at the hospital and Marsha drops me off at the front so I can go in while she parks the car. I stare up at the enormous building that is M.D. Anderson Hospital in downtown Houston. It is many stories high, and scores of people are coming in and out of it.

As I walk towards the entrance, I glance up at all the windows and suddenly I realize why I’m so anxious. This is the place where I will die. I stare at the walls of glass that go up towards the sky and wonder which one of those rooms I will take my final breath in.

I start walking slower. I stop. I squeeze my eyes shut and hot tears stream out. This is too much. I have Stage III cancer, I have a bag of my own piss strapped to my leg because my bladder hasn’t healed yet, I will most likely undergo the “Mother of All Surgeries”, which sounds like something out of one of those stupid Saw movies, my son has had most of his lung removed, and I’m walking into the building that I will most likely die in.

With my eyes closed, I face heaven. “Where are you, God? Because I’m going through this alone! Do you even care? Fix this! We don’t deserve this! Where are you when we need you?” I’m angry and it feels good to release these emotions. I’ve pretended to be strong for so long.

When I finally open my eyes again I see her. She is being wheeled into the hospital by her parents. She is maybe 9-years-old. Her skin is pale and loose and her body is gaunt. She doesn’t have any hair, and she isn’t wearing a hat to hide that fact. I don’t see her mouth because it is covered by a surgical mask. But I do see her eyes.

She has striking, beautiful blue eyes, and the moment I notice her our eyes lock onto one another. I continue staring at her as she is whisked past me, and she turns her head to hold my gaze. She meets my stare unashamedly, but in her eyes, I also see something else.

She is afraid. In those few moments of eye contact, I see the struggle that holds her captive, can picture her dealing with the weight of her disease, and death, and everything else that a 9-year-old shouldn’t be worried about. I desperately want to help her, because I am strong because I have 33 blessed years to fall back on because I am a fighter pilot and I can handle stress and hardship, because I have a beautiful family that loves me, and because she won’t live to be a teenager.

In a moment she disappears down a hallway, and I’m left standing there outside the entrance to the hospital by myself again.

All of my self-pity is gone. It is replaced by a worse feeling. “I’m sorry. I’ve been so selfish. I’m so sorry, God. Thank You. Help her, Lord. Not me. Help her.”

I wipe away my tears and make a promise that I will never feel sorry for myself again. I steel my nerves and enter the hospital with fresh determination to meet whatever lies ahead.