Plan A

On April 26, 2019, my husbands surgery was scheduled. This surgery coincided with not only my 17 year olds Junior Prom, but also my middle child’s 14th Birthday. When it rains, it pours.

We were scheduled for surgery at 2pm. We knew that the plan was to go in there, do a bit of exploratory work, confirm that the cancer had not spread, and then do the right colectomy. This was supposed to take 2+ hours. I didnt know what was going to happen, but I did know that we needed this surgery to take 2+ hours, because if it was shorter, that was bad news.

We got to the hospital around 11:30am. My husband got checked in, and we began the agonizing process of waiting. They called him back and he was allowed to take 2 people with him, so I went. They put him in a bay, had him bag his clothes and belongings and take off his wedding ring, which I took and hung around my neck on a necklace I was wearing. He put on a hospital gown, bare butt and all, and he laid down. Its so surreal to go voluntarily into these types of situations. You hear about people having surgery and having cancer and you always think that this is forced upon them. Like they are dragged kicking and screaming into the room or something — maybe a bit ridiculous, lol But you certainly do not think its such the mundane process that it actually is.

As they hook him up to monitors and tubes I start to feel myself getting anxious. But Andy, he’s the picture of calm. Up to and including this point, he feels completely fine! He is completely asymptomatic. He feels fine, he looks fine, he has no pain, no special diet he has to follow, he is, for all intents and purposes, healthy as a horse … except that he has cancer. He went in to work each day since his diagnosis, he had been a complete rock while I was a total basketcase. Back in the hospital, the nurses tell me its time to say our “see you laters” … I guess goodbye would be too ominous, lol But I can’t help but start to panic. I grab the plastic bag with my husbands things in it, I wrap my arms around him and I tell him he is my everything. I tell him I love him and I cannot live without him. Then I leave. Through tear soaked eyes, I find my way out to the waiting area, where I sit, and cry. The whole time I’m nervous. I keep pacing back and forth. I go between being calm and being a mess. 45 mins after the procedure begins, we get a page from the front desk to head to a conference room through a side door.

I knew what this meant.

The surgery had not gone as they’d planned. I broke down and started sobbing into my dads arms. Dr. Glasgow came into the room and talked to us. He confirmed that the cancer had spread to 2 other organs, the small intestine and the peritoneal wall. Andy was in stage 4 cancer. They did not do the right colectomy as planned, they backed out and closed Andy up, and moved to Plan B. My husband was in recovery and was able to go home within the next hour.

Oh my God. It metastasized. Oh my God, how could this have happened? This puts him in that horrible survival rate statistic range! Not him. Not my Andy. No fucking way.

Dr. Glasgow had taken pictures of the spread and since I had become an information junkie, I needed to see this cancer. I needed to put a face with this enemy! And here it was. It looked like fish eggs. You’ve got to me kidding me!!? This. This is what we’re dealing with? Just take them out! Cut that shit out and let’s be done with all this! Patience has never been my thing.

Plan B. That’s the plan we hadn’t considered because we knew Plan A was going to be all he needed. This little shitty had spread to 2 other organs in a matter of 4 weeks! That was just unbelievable to me! It is still unbelievable to me considering the entire time, you would have never of known he was sick at all! But here we are. Stage IV cancer. On to Plan B.

Say What?

So, how do you tell the people you love that you have cancer? Ummm, we had no idea. I had never known anyone with cancer before. I was lucky enough in my life not to be touched by this terrible disease, until now, when it is literally sleeping in my bed.

But how do you TELL people you have cancer? We decided that it was not something we could send in a text message or through a phone call, it was something we had to tell our family in person. So off we went. Setting meetings with each of our primary family members in one weekend to deliver this terrible news.

We told the kids first. They were shocked but we definitely tempered the information so as not to scare them. We made sure to let them know we had a plan in place to attack this cancer and that everything was going to be fine.

We told the parents next. We decided that we’d take a 2-pronged approach, a 1-2 punch, if you will. Starting off the conversation by saying that we had bad news and good news. I would deliver the bad news and Andy would come in and follow that up with the good news, the plan of attack. I formulated what I wanted to say, I practiced in the shower, I had a flow of how I wanted the information to be heard, I was concise, giving facts and not trying to get too emotional as I delivered the news. I felt as prepared as I could be to ruin the day of quite a few people.

And we did.

We ruined the day (life?) of everyone we saw that weekend. It was meeting after meeting of ruined days. It was hard, but it was the right thing to do.

Interestingly enough, when we asked people why they thought we had setup the family meeting, there was a recurring top 3 reasons:

1. They thought we were getting divorced
2. They thought we were moving
3. They thought one of us had lost our job

I mean, honestly, I would have rather delivered any of the above news before I delivered the cancer diagnosis.

Once everyone in our immediate family knew, we went public with the information on Facebook. I’m a big Facebook fan, it’s how I keep in touch with a lot of my family and I don’t let the political stuff ruin my day. The amount of support you receive after a diagnosis like this is incredible. Its overwhelming and really makes you believe in the good of humanity once again. We were inundated with kindness and well wishes, facebook messages and posts under our announcement. It truly was the best to see how supportive everyone was, it made this whole nightmare just a little bit more tolerable. But we had a long way to go.

Face the Facts

Thursday, April 11, 2019 08:15am That’s when we got the confirmation. It was Mucinous Adenocarcinoma of the Appendix. Our appt with Dr. Glasgow was short. I had no idea what questions to ask, I had no clue what the diagnosis meant or what our next step should be. Unsure of what to do or what to ask, I opened my laptop and frantically typed, word for word, what was being said during the meeting as if I were some manic court reporter who’s only job was to document every syllable. I knew neither one of us would remember what was being talked about and I definitely knew that I would want to know at some point, so I typed. Its all I could do.

We were given another surgery date, 2 weeks away, and a series of tests that needed to happen prior to that surgery. We were told that we had a Plan A and a Plan B for the surgery. Plan A consisted of a right colectomy, in which they would take out the lower quadrant of his colon (which contained the closest lymph nodes to the tumor) to rule out lymphatic spread, and also do a bit of an exploratory effort while they were in there to make sure it had not spread to any other visible areas. Plan B was in case they got in there and saw that it had spread to other areas. Plan B consisted of an extremely invasive, extremely long surgery in which a technique called HIPEC would be used. But we didnt worry too much about Plan B since we were sure that everything was fine and this was all going to be done and over with quickly. So fully implementing Plan A was really the only option we had considered since the dr who removed Andy’s appendix noted in all the charts that NO perineural invasion was identified — meaning, he had not seen evidence of spread at the time of his appendectomy, and that was only a week ago. We were confident that all this was just preventative and everything would be fine.

Meanwhile, I continued to learn as much as I could about this diagnosis. I found (and purchased) research papers from academic websites like The American Society of Colon & Rectal Surgeons and the US National Library of Medicine and The National Institutes of Health, I searched through photos on Google to see what this little shitty cancer looked like, I read article after article, I joined facebook groups for survivors and those who were in a caretaker role, I asked questions about things I had never thought I would need to know about in my life. I NEEDED to know what I was facing, I had to be informed. Knowledge is power, and it became my coping mechanism. I knew that I would want to ask questions, but I needed the information to even formulate the questions that I wanted to ask. I needed to know what was a good answer and what was a bad answer, I needed to understand what different scores meant and how it related to overall survival rates and what the percentages were for each factor. Here are my husbands scores:

CEA tumor marker: 3.2 (collected on 4/11)
CA19-9 tumor marker: not tested
CA125 tumor marker: not tested
Histologic Grade: G2 moderately differentiated (collected on 3/29) High-grade
Histologic Type: Mucinous adenocarcinoma
Primary Tumor: pT4a (collected on 3/29) with serosal implants present
Tumor size: Cannot be determined. Scattered foci over 9cm, spanning the length of the appendix, without dominant mass
CC score: unknown at this time (will be collected during surgery)
PCI score: 4-5 (estimated on 3/29)

So what to do now? I kept reading. I read everything (with google open so I could google every word or phrase or acronym for which I didnt know the meaning … and that was A LOT.) And by the time I was done, I felt like an encyclopedia for this ridiculous cancer. I could spew survival rates for each type, good thing we don’t have the one with the signet cells, I’d tell myself to try to help the 38% survival rate, if metastasized, for what he had look just a tinsy bit better. I combed through document after document to try and find a better outlook, but I couldn’t. So this HAD to be something we nipped in the bud now. Plan A was a go, and we would take all the steps we needed to prepare as best we could for the surgery.

It’s Cancer

Wait. What? No. Wait. WHAT?

Staaaaaaapp. It’s not cancer. That’s ridiculous! You’re 38 years old, you have a 4 year old who needs you, you have 2 rowdy teens who are the thorn in our sides right now, you have me, who certainly cannot do life alone without you. You have NO family history of cancer, like NONE. So, this cancer thing? Nope. You don’t have that.

But he did.

A week after he had his appendix removed, on Thrs, April 4, 2019, the dr who removed the appendix called. He had sent the appendix to pathology, as standard operating procedure, and it came back as mucinous adenocarcinoma. So, not only did he have cancer, but he had a cancer that was so RARE that noone had ever seen a case in our area. AND, as the cherry on that shit cake, it was a bad form of cancer, something that was extremely aggressive and had this mucinous element to it which meant that it’s easily spread.

Meanwhile, I was in San Francisco for another in-person workshop with the P1 group. One of my best friends also lives in San Francisco, so whenever I travel there for work, I always try to make a trip to see her. So I planned to spend the weekend with her and just hang out before coming back to St. Louis on Sunday.

My husband had cancer. He didn’t tell me. He didn’t call me when he found out. He didn’t beg me to come home. He didn’t say anything, he didn’t tell anyone, he just let it process within himself. Until Sunday. I got back from San Francisco in the mid evening, around 8-9pm. I walked in the house and the whole house was quiet. I set my luggage down and started to unpack the Chipotle bag that I picked up to eat on the way home from the airport. I see Andy walk gingerly down the stairs, aggressively holding on to the railing, taking each stair slowly and making sure to place both feet on each step before taking the next step down. I remember feeling like Really? You’re still milking this appendix thing? (roll eyes) I had a whole conversation with my friend in San Francisco (who happens to be just as big of an asshole as I am, lol) about how we are just not empathetic towards certain types of situations! We were commiserating with eachother about how other people are ridiculous when it comes to being sick and neither of us had any type of sympathy for that behavior.

But then something changed. Andy started to ask me what I had going on the next day at work and what my schedule looked like the rest of the week. He offered to take my bag upstairs and told me I needed to eat — which isn’t really too weird, but the way he was saying it, like he had something to tell me and he wanted me to get through the food before saying anything. I asked him what was wrong because he was just acting weird. He continued to tell me that I just needed to eat right now and we’d talk later. Not accepting that as an answer, I poked harder for him to just tell me what was going on. So there he stood, on the other side of our kitchen island. He said “It’s cancer. I have cancer.”

Wait. What? No. Wait. WHAT?

I ran to him, hugged him and we both cried into each others arms. He told me that the dr had called him on Thrs and told him the news. I was so angry that he didn’t call me right away, but I understood why he didn’t. He said that he wanted me to have a good time with my friend and that telling me on Thrs wouldn’t have changed anything, so he made the decision to let me have my weekend of fun and just tell me when I came home. So there we were. He showed me the pathology report, of which I understood nothing. He told me the name of the cancer type, of which I couldn’t pronounce. He told me that I was the first person whom he had shared this news with. So, like any sane human, I went immediately to Google. I typed in appendix cancer, I typed in mucinous adenocarcinoma, I typed in anything I could think of that would yield some sort of information on what we were dealing with.

Nothing.

This thing was SO RARE, not even Google knew much about it. Possibly for the best, but infuriating nonetheless. The dr who did the original appendectomy said that he had done some asking around because this thing was so rare — even the DOCTOR (who removes appendix’s for a living) didn’t know where to turn to for help!? However, his research kept coming up with one name, Dr. Glasgow at the Center for Advanced Medicine within Siteman Cancer Center in Barnes-Jewish Hospital in St. Louis. He is the only surgeon in the area who does an extremely specialized procedure called HIPEC, if needed. So Andy had made an appointment with him for the following Thursday morning.

Since our attempts to research this thing were proving to be futile, we decided that we were just going to keep this to ourselves until we knew more and had more information. So we spent the rest of that week pretending like everything was fine. But I was terrified.

Appendicitis

At urgent care, they gave my husband a CT scan (which, again, I was initially pissy about because of the cost) and immediately identified the problem. Appendicitis. They recommended he go straight to the ER to have his appendix looked at more closely.

Meanwhile, I had the P1 team at my house. We were having a great workshop! We got a lot accomplished and while we were breaking for lunch, my husband came home. He told me the news and that he was heading to the ER. Still peeved, but now a bit concerned that he might actually have something wrong with him, I ask him if he needed me to drive him or if he needed anything from me? He says no, that he is totally fine to drive himself and who knows what the ER will recommend or how long it will take. So I let him go and me and the P1 team went back to working on the project.

My mind was racing tho. Here I was, hosting this group, literally in my home, and my husband was heading to the hospital! What was the right move here? Do I send the P1 team away? If so, where were they to go? Do I go with my husband and sit in the ER just to wait for God only knows how long? I didn’t know what to do. So I went with status quo. I remained with the P1 group. But by 3pm, my husband had been seen in the ER and they told him that he needed surgery to have his appendix removed ASAP. His surgery was scheduled for 5:30pm. I could no longer focus on the P1 project, and my team could tell. They had asked me no less that 30 times if I wanted to go be with my husband at the hospital, each time I declined. But by 4pm, it was clear I could no longer stay at home. I apologized and sent the P1 team out the door. (Note, they were SO understanding and completely okay with leaving! It was really more my stubbornness that was keeping everyone at the house, not my P1 team.)

So onto to the hospital I go. I get there, find my husbands room, and see him just long enough for him to detect the aggravation on my face and in my body language. I was aggravated. Here I was, trying to be a female in the tech industry and waiting YEARS for this opportunity, and THIS! This had to happen now. Right. Fucking. Now. Aggravated was an understatement.

He went into surgery around 7pm, not 20 mins after I got there, and around 8pm the dr came out and talked to me. He said that he had successfully removed the appendix, but it had perforated prior to removal. I remember him saying that his appendix was the gnarliest looking appendix he may have ever seen, and thinking Whoa, really? I mean, this was an older dr who had clearly been around the block with an appendix or two, and MY husbands was the gnarliest he’d ever seen? Huh.

The surgery was laparoscopic. So all that was left of the whole ordeal was 3 itty bitty scars on my husbands belly. He came out of surgery and ended up spending the night in the hospital because they wanted to administer IV antibiotics. The next morning I went back to the hospital and was (again) peeved to learn that they wanted to keep him ANOTHER night, possibly 2!? I couldn’t imagine how much this was costing us and since I’m the one in charge of finances in the house, all I could think about was how much shuffling around of money I was going to have to do to cover this ridiculous ordeal … and now they wanted to keep him another 24 maybe 48 hours??? Aw HELL NO.

It’s so ridiculous looking back and thinking about how I was so pissed off at all of this. I was pissed at my husband (who clearly was not at fault here, but I kept thinking that if only he had eaten less McDonald’s or something, this would not have happened.) I was pissed that the nurses (who, again, not their fault, but kept coming in and telling me that they needed to keep him there because of the perforation in the appendix, which put him at a higher risk of infection.) I was pissed at the dr who operated (who, I rationalized, clearly didn’t do a good job of cleaning it all up or else they wouldn’t be so worried about infection.) I was SO pissed that we decided to go with the stupid high deductible insurance plan thru work to save money because we rarely got sick or need to see a doctor. I was trying to place blame, I NEEDED someone to blame.

There was no one to blame.

He was sent home on Sunday, March 31st. By this time I had resolved myself to paying the entire max exposure for our insurance (ughh) and was sort of, in jest, but kind of serious, planning all the other surgeries he could have now that we were already in this deep! He needed sinus surgery and to get snippy-snipped, if you know what I mean, he had a situation with his lower back that needed attention and … what else could I pile on here since we’re already paying anyway! It was a fun game.

The work week started and my husband’s driving was restricted, so he decided to work from home that week. It’s important to restate that I also work from home, so having him at the house was a complete distraction. He decided to setup shop in the basement, he had his laptop, his PlayStation, and all the streaming TV services at his disposal. And he used them all. so. much. of. The Office. Recall that I have a bit of a problem with empathy. He had surgery to remove his appendix and had 3 tiny little holes from the laparoscopy that were healing. I had birthed 3 babies via c-section. I win that pain fight. I could not stand to have him hobbling around the house hunched over, taking Norco pain meds 4-5-6 days after the surgery. Are you kidding me? I switched over to over-the-counter Advil the second I came home from the hospital WITH a newborn. Get over yourself, dude, man up. You are NOT in that much pain. In my mind, I constantly compared my c-section with his surgery. I would think to myself that mine was WAY worse in terms of what they did, the incision, the recovery, basically everything, and I had done that 3 times! I thought he was being so ridiculous.

Yes, I’m an asshole.