Appendix cancer.

Appendix cancer. Yeah, I hadn’t heard of it either until 4 days ago. The organ that’s not an organ, a byproduct of evolution, can in fact cause harm, grow tumors and wreak havoc on a family in a matter of minutes. That’s what Jeremy’s appendix decided to do. 

It started with a little back pain over the weekend, probably a pulled muscle he thought. By the beginning of the week the pain was a little more constant and not in the back anymore, it was on the right side of the abdomen. By the second day of this right sided pain worsening, I thought it would be best to get checked out. For any of you medical people out there, you know you don’t mess with right lower quadrant abdominal pain. This is a red flag.

Jeremy had no other symptoms, he wasn’t ill. He didn’t have a fever, nausea, vomiting, anything that would indicate appendicitis (infection) other than the pain. 

That Tuesday I got an email from Jeremy at work telling me the pain was worsening. He doesn’t do that. I called the doctor’s office and made a same day appointment, then called Jeremy in his classroom and begged him to leave work. For those of you who know Jeremy, he doesn’t miss work, he doesn’t ever call in sick. He’s the most dedicated teacher I know. He agreed to leave work. Thank God!

We saw the nurse practitioner at the office. The puzzle pieces weren’t fitting together. Jeremy’s pain was in the area of the appendix, but he wasn’t acutely ill. It just didn’t make sense. They drew blood and everything was normal. If it was an infection of the appendix (appendicitis) he would have had an elevated white blood cell count or some kind of indication of an infection, but nothing. 

We couldn’t figure out what was going on, so the NP sent Jeremy to the hospital for a CT scan. After the test, the staff sent us home. Before we were even out of the parking garage, Jeremy got a phone call from the NP. Something was abnormal with his appendix. It was VERY enlarged, but there were no signs of acute inflammation. At this point, he told us to turn around and go back to the hospital, check in at the ER and Jeremy would likely need to have his appendix removed. 

After speaking to a very confused ER doctor and the surgeon (who happened to be the same guy who removed Jeremy’s gallbladder 3 years ago) the decision was made to admit Jeremy to the hospital and remove the appendix the next day. The doctors informed us of 3 possible scenarios; appendicitis (the most likely and most common), mucocele (a fluid filled cyst, benign), or a tumor (the least likely). 

The next day was Wednesday, we were taken to the surgery waiting area and told the surgery would be about 1 hour. I was given a pager and told to wait in the family waiting area. I waited and waited and waited until my anxiety was creating all sorts of worst case scenarios. It had been 2 hours and he was still in surgery. Something was wrong. 

Finally, when I thought I was going to pull my hair out and I had bugged the receptionist for the 5^th time, the surgery was done. I was told to wait in the family consultation room to speak to the surgeon. This also didn’t feel particularly normal. Why do I have to speak to the surgeon for a routine appendectomy in a private dimly lit room with a box of tissues?

By now I’m pacing. I’ve been pacing for at least 30 minutes. There is no way I’m going to sit calmly and wait for the surgeon to come and speak to me. I’m going crazy. What is happening to my husband? Don’t they know I’m a basket case? I need reassurance, not more waiting. 

After what feels like forever, the surgeon comes into the consultation room. We sit down, close the doors and he looks haggard. He starts to describe the surgery to me in detail. The appendix was larger than he had ever seen before. It was incredibly difficult to get out. He lost track of time. He had to remove a piece of bowel and peritoneum. The appendix ruptured in a plastic bag as he was removing it from the abdomen. He came “this close” to having to do an open abdominal incision (which would have instantly bought Jeremy a week stay in the hospital). As you may imagine, none of this was reassuring. 

Due to the complicated surgery, Jeremy had to stay overnight in the hospital. We wouldn’t find out results of pathology until the next week, at our post-operative appointment the following Tuesday. I had a really bad feeling. I kept asking why the presentation was so weird, why the puzzle pieces weren’t fitting together. I put it out of my mind because there is no possible way it could be cancer. Who gets cancer in their appendix? It was just appendicitis with a really weird presentation. 

We went home. Jeremy worked on healing, getting stronger. We went to our post-operative appointment the next Tuesday, thinking routine follow up. Fiona was with us. It wasn’t routine, it was cancer. Cancer? Cancer? A 37 year old man who doesn’t smoke, barely drinks, has a 3 year old daughter, no family history, no medical conditions, has cancer? He threw up. 

How do you integrate that kind of information? I quickly took Fiona out of the room. I asked the receptionist at the front desk to watch her for a couple minutes,  that we just got really bad news. I went back in the room. It didn’t feel like I was actually in my body, I couldn’t stop shaking, shaking, shaking. It was like I instantly developed Parkinson’s. Jeremy was white. The doctor was talking to us; Jeremy needed surgery, this was a cancer called adenocarcinoma, etc, etc. I’m not sure either of us actually heard what he was saying other than “cancer” and “more surgery”.

All the sudden, Jeremy became a cancer patient. In an instant. 

We scheduled the surgery, we went home, we cried, we called our family. I kept thinking, “are we just supposed to act normal now?” I didn’t know what to do, how to act. I can’t lose my husband. He is my life. He can’t have cancer. I’m the one who should have cancer. I’m the one who’s always stressed and worried and neurotic. Jeremy’s the one who is chill, relaxed, takes things one day at a time. 

A couple days go by. Neither of us know what to say, how to act, what the future holds. Luckily the surgeon printed out the pathology report for me and I started to read it over and over again. This was appendix cancer, it was graded a 3 due to the size of the tumor, the margins were clear, the appendix didn’t rupture in the abdominal cavity. 

I called my friend and asked her to be my brain. I couldn’t research because all I could see was “extremely rare”, “survival rate” and “prognosis”. I called the surgeon and asked him to order a full body PET scan. I made an appointment with an oncologist. We waited. Jeremy worked on the chicken coop. We went and saw a movie. We didn’t sleep.

Today was our appointment with the oncologist. Jeremy had his PET scan yesterday. It was clear. It didn’t show any metastases. That is the good news. The bad news is this type of cancer is extremely rare. The estimated incidence is 0.004% to 0.08%. No one really knows how to treat it, there are no guidelines, there is not even an expert consensus. There are 4 types of adenocarcinoma of the appendix. Jeremy has the colonic type. This is the more aggressive type of cancer. 

Jeremy is scheduled to have a right hemicolectomy on Monday June, 11. This involves removal of a large part of his colon and lymph nodes. Once the lymph nodes are examined we will know what stage cancer this is. If this is a stage 3 cancer (involving the lymph nodes) he will need to have 6 months of chemotherapy. If the lymph nodes are not involved, it will be stage 2 and we don’t know what the treatment will look like. 

At this point, we feel optimistic. The lack of metastases was good news. The surgery Jeremy is going to have on Monday is a big one. Open abdominal surgeries require lengthy hospital stays and recoveries. He’ll be in the hospital for about a week. We will find out the results of the surgery the following week. 

All prayers and good vibes accepted right now. (and jelly beans. - jeremy)