$409,220.50

Yep. $409,220.50 USD. That is how much Andy’s care over the course of 2019 would have cost us if we didn’t have insurance. It is completely insane to think about. I remember being SO mad at our decision to go for the high deductible plan through work back when all this started. It seemed like such an awful decision at the time, but, looking back? Oh man. I am SO grateful for our insurance! Sure. We’re still fighting with them and filing appeals about the $40k number up there under “Patient Responsibility,” and, sure, $40k is a HUGE number. But you know what an even larger number is? $409k!! Holy hell! This year, we put my husband on his own insurance plan. The deductible is only $2k and the out of pocket max is only $3500. This is MUSIC to my ears as we continue to struggle with the $12.5k out of pocket max from last year — not counting the co-pays for chemo, specialists visits, oncologist visits, ER visits … I could go on, but I won’t. I know we’re blessed, and Andy is doing so well!

But as we closed out 2019, I started wondering what 2020 was going to bring us? I’ve been so focused on getting through all this awful chemo that I had not really considered what would happen after its all over. From then on out, it’s basically a waiting game.

I hate waiting.

We are supposed to just move on. Go about living our lives as if everything is fine and like none of this ever happened. And as enticing as that seems, as much as I long for some normalcy and schedules that aren’t constantly in flux — how does one just forget that all this happened? Andy will have a CT scan every 3 months for the first 2 years after treatment and his tumor markers will be checked too. But I don’t trust scans as far as I can throw them and Andy’s tumor markers have basically always been relatively normal, even when the cancer was raging in his body … the tumor markers remained normal. Speaking of tumor markers, Andy’s were recently checked and they came back, not surprisingly, normal.

CEA: 1.4 (same as last time, normal is 3 or below)
CA 125: 8.8 (this is 1pt lower than last time, normal is 30 or below)

I’m afraid that there is nothing that we’ll be able use as a good diagnostic tool for this cancer as it does not trigger any of the “normal” ways to check for recurrence. Since the tumors themselves produce a clear mucus substance (which is INVISIBLE, because its CLEAR) it cannot be seen on a scans, and blood work for tumor markers is unreliable at best. I’ve had this doubt from the very get-go with this journey, and now here we are, and it’s all becoming real.

But I have to breathe.

Maybe it will be good to just forget all this happened for a bit, I mean, at least until our first scan. lol Maybe we’ll get lucky (lucky … not the right word here, but) and Andy will need surgery for a bowel obstruction once a year, and we’ll be able to get the surgeons confirmation that the cancer is not back. Honestly, that is the only way I will actually believe that he is truly in remission. And we know, as of this moment, that the cancer is NOT there, so after these final 4 chemo sessions, he will be in remission! That is a HUGE relief and an amazing testament to my husbands resilience and strength. To OUR resilience and strength as a couple in that we did not kill each other during this whole ordeal! But I can’t be mad at it. My husband and I were talking the other day and he said something that caught me a bit off guard. He said that he thought this cancer actually brought us closer together. I stood there, looking puzzled when he said that. I mean, nothing like a good life or death situation to really force you to prioritize your relationship over everything else. So I sat back and really thought about it. And in the grand scheme of things, in between our massive drop down, blow out arguments and constant bickering, we did learn a lot about each other. Things we likely would never have learned any other way. We learned a lot about ourselves and how much we could withstand and handle. We were forced to analyze and dive deeper into our relationship than either of us probably ever wanted to, and while this surfaced quite a few problems that were deeply hidden, I am so glad they were uncovered. It forced us to work through them and understand the others perspective and try to accept what we couldn’t understand (I still have problems with this!! lol) even if we didn’t like it. And now that we are near the end of this, I am actually grateful for the journey.

My husband and I are closer today than we might ever have been. I feel proud of him and his accomplishments, not just with this cancer fight, but with his everyday life! I want to enthusiastically encourage him to do the things he has planned this summer, such as getting his strength back and being more mindful of his time with family. I am, after all, his biggest cheerleader and I will always be there for him for as long as he’ll have me and accept my help.

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.