Shit Lottery Winner!

Congratulations!! You just won the shit lottery! Only this lottery is different because every human is forced to play, even though you can’t purchase a ticket, and no one wants to win.

This is the lottery that no one gets excluded from and fate is the only differentiator in who wins and who loses. It’s the only lottery that, in fact, if you win, you lose.

Sounds like fun?!

No.

The shit lottery is something, sadly, I’m very familiar with in my life. I’ve had friends who’ve been winners in this lottery and I’ve seen first hand the damage that ensues once your ticket is drawn. Some have had positive long term outcomes, some have been devastating, but either way, you lose. Not just loss of life, not in every case, but loss of time, money, relationship strength, energy, physical health, mental health, life balance, everything. Everything is thrown off.

Andy came home from the hospital on Saturday evening, 2 days ago. He was miserable at the hospital, they wouldn’t let him rest, they would come in and check vitals and poke and prod him every 2 hours during the night, so he wasn’t sleeping. Everything was looking fine, so they agreed to discharge him. This was really good news! A hospital stay that I had anticipated being 10+ days long only ended up being 6 days! I mean, that is a HUGE win for us and is a testament to how strong my husband is, and how much willingness we have to fight this thing! He’s on a shit ton of meds, oxy10, tylenol, ibuprofen, Gabapentin nerve blocker, lidocaine strips, a Lovenox shot once a day, ice and a velcro binding girdle-thing to hold him in. He has also been carrying around a pillow which he hugs in front of his body to help him feel more secure with the incision. He says he feel like his guts are falling out if he doesnt hug this pillow, so he’s happy to walk around with his friend, “Peppa Pillow” for life if he has to, lol In addition to that, his movement is very limited. He isn’t supposed to lift anything heavier than a gallon of milk and it takes him a good 2 mins to stand up from a laying or sitting position. Our 4 year old and the dog are the most unphased by all of this, lol They still want him to play and wrestle and that is hard for them to understand. We told the 4 year old that daddy has an ouchie on his tummy and the he has to rest and walk very slowly for a couple weeks. We went over the places that he could hug and touch daddy, like his head was a good place to give lots of hugs, and his arms and hands were good to touch and hug too. We’re trying our best to put all this really complicated adult stuff into terms that will resonate with him and that he’ll understand. I hope we’re doing the right thing!? Where is that damn cancer user manual when you need it!? For right now, tho, it’s lots of sleep for Andy and (ughhh) more episodes of The Office than one human should be allowed to view, lol But I imagine he’ll be doing more sleeping than watching TV in the short term.

So, what am I worried about now.

Now that he’s home and we’re on the mend, I can’t STAND not knowing what is next. Everywhere I look I have people telling me that their specialist told them that they’d just have to “wait and see” at another scan in 6 months. Well, that is just not an acceptable answer. Here’s what we know about this cancer, its aggressive. It spread to 2 organs in 4 weeks, and then to another 2 organs and 1 additional location, his pelvis, in 10 days. So, this whole idea of, Well, lets just wait and see, nope, I’m not interested in that strategy. Not for us, so let’s come up with a better, more proactive plan. I need to measure. I need something to measure against. Now, I, admittedly, am not an oncologist, or a specialist or even a doctor of any sort, but I am a smart individual and I am using all my deductive reason skills and project management skills, and any other skills that I have picked up over the course of my adult life, and have decided to approach this in the only way I know how. Measurable outcomes. Outcomes that I can track against, numbers, patterns, thickness, scans, anything that will give me some sort of measuring stick so I know where we stand at each re-measurement. I mean, I don’t feel like this is asking too much, right? When you go into a car repair shop because your tire popped, they don’t just say, Welp, why don’t you just go about using this car as you normally would and come back in 6 months so we can re-evaluate the situation. That sounds ridiculous, right? I mean, why is having cancer any different? That’s basically what they might be telling my husband to do! Here’s what I think, we know the problem, right? So lets fix this shit and be done with it! It could get 1000 times WORSE by waiting 6 months, so lets figure out a way to be proactive and get ahead of the problem before it gets out of control.

Maybe I’m projecting. After all, we technically haven’t met with our oncologist yet, so she may very well tell me that the next step is to get a scan (or bloodwork, or something) so we have a baseline knowledge of where we are before starting chemo, then, we can see where we end up. I guess I’m just nervous in reading what others experiences have been and doctors overwhelmingly taking this “wait and see” approach, it makes me nervous that we’ll be told the same. And, like I said, we’re not interested in that. However, we really are at the mercy of the doctors here. I can’t FORCE them to order tests or scans, I can’t force them to be more aggressive with treatment, I can’t force them to care as much as I do about my husband and do the things I feel are necessary. And that is terrifying.

Radioactive Pee

Day 2 post-MOAS. Yep, you read that right. Radioactive pee. Apparently, my husband is radioactive, lol Anytime someone comes in and has to handle his urine, they have to suit up, wrapping themselves in a special gown, putting on goggles, a mask, double gloves on their hands, using some special radioactive-proof gloves, and footies on their feet. They look like they could walk into Chernobyl and be just fine! Its a bit ridiculous, but whatev, lol

Today has been much better than the past couple days. Yesterday was still pretty rough. Andy was so nervous that if he moved, he would start to spasm again and he was trying to avoid that at all costs. So he basically didn’t move unless he was forced to. His speech was quiet and he spoke in short 2 word sentences the entire day. But today, I walked in around 8am and he was talking in full sentences! That was already an improvement! So I knew he was feeling a bit better, maybe better is the wrong word, he was feeling a bit more confident in the pain management plan.

They got him out of bed and walking around today, the goal is to have him walk (or, ambulate — PT term, lol) at least 5 times. The first time was rough. The PT had her work cut out for her, but she gave my husband some really good tips on how to do this “roll” thing out of bed so he could start to become more independent, and when he was finally standing up, she got him walking! We’ve learned that movement and breathing are of utmost importance right now. We’ve also learned that flexeril makes my husband EXTREMELY sleepy. Which was good for yesterday because he really just needed to make it through that day, but now — he needs to start eating and moving and taking more deep breaths. They are SO concerned about his breathing! We have this ridiculous gadget (that looks like it came from the dollar store) to help him take more deep breaths and measure how deeply he’s breathing. For reference, when I breath into it, I hit 3500. When my husband breathes into it, he barely hits the 1000 mark, usually closer to 750. So we’re working on that today too, but the flexeril is a problem because it just knocks him on his ass and he can’t work on any of the above if he’s sleeping. Its been a bit frustrating, me telling him he needs to wake up, and him saying that he can’t keep his eyes open and just needs to sleep. Ughhh We’re not giving him that drug anymore unless its at night.

How am I doing? Everyone keeps asking me that. Welp, lets recap, shall we? I learned my husband had a rare and aggressive form of cancer, which, btw, was already stage 4, about 4.5 weeks ago and since then, we have done testing, bloodwork, 3 surgeries, including 1 MASSIVE “Mother Of All Surgeries” surgery, and now we’re heading into chemotherapy, I missed my daughters prom, I missed my sons 14th birthday, I missed an opportunity with my career that may or may not present itself again, so. Hmmm. Well, I did get 7 hours of sleep in the last 3 days, so that’s something. But I have not exercised in about 4 days and that is starting to wear on my nerves. I just feel like I want to be here (at the hospital) with Andy. He just needs so much help right now and I am his advocate. He is comfortable with me being here, seeing him in this position of vulnerability, and that is oddly comforting to me. Its not very often you get the opportunity to truly help someone you love, I mean TRULY help them, and I want to be here to support him in every way I possibly can. Not to say he is helpless, but he does need help to do certain basic things. I am honored to be the one to help him.

See? I can be empathetic! I’m not always an asshole!

Today I’m researching more about the appendix cancer specialists we have been referred to. I have contacted both the Houston and the Chicago teams and am in the process of sending (faxing … yes, people still use this antiquated technology. rolls eyes) all Andy’s records to the teams to dive into. I really have no idea what to ask at this point other than to get their opinion on ongoing treatment. Our doctor here in St. Louis is very happy to consult with and work with the specialist teams to implement their recommendations, tho I’m not sure that is what the Houston or Chicago teams will want to do. I suppose those are all answers that I’ll need to get moving forward.

The kids are okay. The teenagers are more worried about what is happening in their lives than in Andy’s, and that’s okay. To be expected, really. I mean, would they actually be teenagers if they were worried about someone other than themselves 100% of the time? Would you have worried about something like this when you were a teenager? lol It’s really our 4 year old who I’m mostly concerned about. At this point, he actually has no idea that anything is wrong — and I give all the kudos to myself for that! I am trying REALLY, REALLY hard to make it seem as tho everything is okay for him. He LOVES spending time with grandma, so that’s who I’ve hooked him up with for most of the time so far. Tonight, a friend of Andy’s, who’s son also happens to be in the same preschool class as our 4 year old (and our kids also happen to be best friends) offered to take our littlest for the night and just bring him to school in the morning. I felt guilty for allowing that to happen, but I have come to realize that I need the help, and since most of my stress comes from making sure that our 4 year old is cared for, and I didn’t ask, they offered to help, I needed to allow that. Once I made that call, it was actually an amazing relief for me. It meant that I would be able to stay with Andy and not worry about being “on” as a mom to a preschooler for tonight. Which any mom can attest to how exhausting that can be.

My role now is to be here for Andy for whatever he may need. I am going to try to get some work in, maybe at least read the emails that are piling up in my inbox, or the slack messages that I have been ignoring — but I was very careful to put the right people in charge of my projects so I wouldn’t have to worry about it while I was out taking care of my husband. I’m not worried, I just want to be sure I’m still in the loop when I start to ramp back up into work again next week. I can’t actually complain about work. Not only do I love my company, but I also love what I do and I love the people I work with, both my coworkers and the customers. As I’ve mentioned before, I am extremely lucky to have the job I do. The flexibility and the understanding I’ve received all the way from the C level to anyone on any team, has been incredible — really, as it should be in situations like this, but I know I’m lucky, and I am thankful everyday for that.

Tomorrow only looks better for my husband and for our family! One day closer to having him home, one day closer to getting him well.

Lost

Day of surgery. I’m not really sure where to begin. Today started with my husband jumping on the bed doing a Superman pose (something he and our 4 year old perfected) and ended with him reeling in pain, afraid to move, hooked up to wires and tubes and monitors and cuffs and all the things that make people nauseous when they enter a hospital.

The day began with a simple walk down the block to get coffee. After being up since 3:15am, I was so surprised at how alert and calm I was as we were walking into the hospital. It began just like it did a little over a week ago. We went to the waiting room, my husband got checked in and we were called back and showed our bay. We again bagged his clothes and belongings and this time, I put his wedding ring around my thumb. He put on the hospital gown, bare butt and all, lol, and he laid down. However, I was calm. I wasnt panicked, I didn’t feel like I was on the verge of a manic breakdown. I was relatively content. Very different than how I felt last time. I’m not sure why I wasnt a complete basketcase as this was WAY more serious than the other surgery. Maybe it was the fact that I was familiar with the process, maybe it was because I had my best friend there this time, maybe it was because I had JUST done this and my mind hadn’t quite separated the two instances yet? Who knows? But for whatever reason, I was okay.

I cried a bit as I was walking down the hallway after saying our “see you laters” but as I got to the waiting room, I was okay. Then it was time to wait. Have I mentioned I am not patient? Waiting is my mortal enemy and I despise all of it. Regardless of my hatred for waiting, waiting is what we did.

9am – Surgery begins

My husband, being the amazing human he is, somehow talked the head nurse in charge of his operation to call me on the phone and give me a personal update every 1.5-2 hours. I received my first call around 9:15am. She said that he was doing great, that they had just gotten started and all his vitals were good and he was doing really well. This was SUCH a relief! After speaking with her, I felt much better about everything. Calm, organized, in-control. So I popped back over to the AirB&B to take a shower and clean up a bit before the next call from the nurse.

12:45am – HIPEC begins

The next call from the head nurse came in around noon. She said that they had just finished up the resection and right colectomy and they were about to get him prepped for the HIPEC. WHAT? You mean to tell me that the surgery, this MOAS surgery, that was supposed to take 12 hours has, so far, only taken about 3 … and you are about 3 hours away from finishing? I mean, this was the BEST news I could have received! Certainly this meant that there was not much to be done and that was welcomed relief! I was elated, I was energetic, I was relieved! I was SO worried about all this hacking, and slicing, and burning, and cutting, that was going to have to be done, that I neglected to consider that maybe, there wouldnt be much to do! I was convinced that certainly this was good news, and I took it as such.

3pm – HIPEC ends

I received another call from my new head nurse best friend who said they were 1 min away from completing the HIPEC on my husband. All that was left to do was to drain the HIPEC solution, do a saline rinse and button him up! She said he was the picture of perfection in terms of being the ideal patient while he was under anesthesia. He did really well, she assured me, and said they would be done in 1-2 hours.

Relief.

I hung up the phone and started to cry tears of joy. He had made it! It was over! The procedure was a success! They had successfully resected all the visible tumors and performed the HIPEC to get all the microscopic little shittys out, and he was in the home stretch! He made it, he was going to be okay! I was crying tears of relief, tears of joy, tears to wash away this horrible thing that I was sure we were done with! I was so excited! Through my tears I eagerly told the story of what the nurse had said on the phone to my friends and family who were sitting in the waiting room with me. Announcing, HE MADE IT to everyone within an earshot! I was so relieved. My heart leaped with anticipation of when I would see him again.

I was quickly brought back to reality when I was asked to head towards the awful door. The door I kept telling everyone was the “bad news door.” You don’t get called through that door unless its bad news, I would say. I do NOT want to go through that door. Then I get a page from the front desk asking me to head to a conference room through the side door. This was bad news. This was the room that they told me my husbands cancer had metastasized, this was the room I NEVER wanted to be invited to again. I cringed as I got closer and I could automatically feel myself start to panic. I told myself that the doctor would just come in and give me the wonderful news! The news that the nurse had already given me the heads up about. That the surgery was a success and my husband was cured! <– expectation : reality –> Dr. Glasgow came into the room and did indeed tell me that he was pleased with the outcome of the surgery today, but that we are not talking a “cure,” we are talking staving off of an eventual recurrence.

Ummm, what? Wait. What? Sorry, but that is NOT what I wanted to hear. Nope, that can’t be the case. That is NOT the situation here. That’s not what I thought I was going to hear.

But what could I do? He told me that the cancer had crept into my husbands colon, small bowel and pelvic region, and although he removed it, the fact that it had spread so much in just one week was concerning. He said that he would reclassify my husbands PCI number as 8 (from a 4-5 last week) and reminded me that even tho he removed it, these were “very aggressive looking cancer cells.” I asked him if this was PMP, a slow growing version of appendix cancer, and he said, No. This was definitely mucinous adenocarcinoma, the fast growing, high-grade version, and it was invasive.

I was shocked. Actually, I didnt really know how to react to this new info. I was just on cloud 9, on top of the world because the nurse called and said that the surgery was successful, now this? I learned that while they definitely considered my husbands surgery a success, this cancer was not gone. When I asked what the next steps were, he said systemic chemotherapy. He said my husband would be off work for the next 4 weeks, he would need about 6-8 weeks to heal, then we’d begin chemo using FOLFOX. Ok. So there was the plan. But I also needed some additional opinions from an appendix cancer specialist. Dr. Glasgow recommended someone in Houston and I had done some research on a place in Chicago, so I also had a plan. I thought it would be a good idea to get some additional eyes on this thing and to see if the collective opinion on the approach with the systemic chemo was the best route for follow up treatment to the HIPEC.

My husband was being transferred to the ICU for close observation after the surgery. To say I was anxious to see him for the first time after this massive surgery, would be an understatement. I wanted to see him to know he was okay, I wanted to see him awake and breathing, I wanted to hold his hand and kiss his forehead, but when I got in the room, he was reeling in pain. He was holding on to the sides of the bed, white knuckled and yelling FUCK! FUCK! FUCK! It was all I could do to just stand there out of the way while the nurses and pain management team tried to figure out the right regimen of drugs to control what was clearly an immense amount of pain. I was completely helpless. I felt like bursting out in tears and yelling at the team to do something to help him (they clearly WERE doing something, but in my mind, it was not enough) but I stayed strong. The last thing my husband needed right then was for me to lose my shit. That was hard. To see the person you love most in this world in the most pain they have likely ever been in, knowing that not even 10 hours ago, they were completely fine. Happy. Healthy, sort of. And smiling. Now this. Pain, scars, cancer, tubes, monitors, ICU, hospital beds, catheters, nurses, doctors, NP’s, specialists, anesthesiologists, oncologists, surgeons, pumps, blood work, tests, everything. Every. Fucking. Thing. I knew that from today on everything would be different, but I guess I didnt realize just how different it would feel.

MOAS

May 6, 2019 Today’s the day I’ve been dreading. Here I sit, 3:43am. Unable to sleep. Laying next to my husband in bed for what could be the last time in a few weeks. He is sleeping, I am worrying. I can’t sleep, tho I am exhausted already from what I know will be a grueling day. We rented an AirB&B close to the hospital so I could have a “home base” somewhere other than the hospital waiting room. Patience has never really been my thing, so waiting for what could be 12+ hours as my husband is sliced open, laying completely exposed and vulnerable on a cold operating table, is literally my nightmare.

Still, here I sit. Awake.

Today’s the day that everything changes. My husband does not know much about the surgery he’s going into. He knows, however, that I have become an expert, and he looks to me for just a little bit of guidance when he’s curious enough to ask. By now, I know how much info is too much for him and I’m beginning to become really good at figuring out exactly what it is he’s wanting to hear. Not details, nope, he doesn’t want those, he wants to know outcomes. I can’t blame him. I can’t say that going into this completely blind and unaware of what they’re going to do is any more or less a strategy than knowing exactly what each and every phase of the procedure entails. Who knows if I would want to know as much as I do if roles were reversed? Scratch that. I definitely would want to know.

I’m terrified.

How will this recovery be? My husband seems to have his eyes set on a 10-day max hospital stay and a good bill of health to be driving in 2 weeks. (rolls eyes) From the research I’ve done, I know a more realistic stay would be 10-25 days. With fully functional mental capabilities (meaning the ability to be productive at work) in 3-4 mos. His work is being extremely flexible, just as mine is, and they have told him they’ll just continue to pay his full salary until he comes back to work. He has refused to even think about filing for short term disability, which is extremely frustrating for me since I think he is going to be out far longer than he expects. But we don’t know what we don’t know right now, and I guess that’s okay. Who knows? He might prove me wrong and be up and popping about within a few days of this surgery!?

How will his scar be? Is it terrible that I am worried this scar will be disastrous? I look at his chest now and all I see is soft skin. I am nervous that this ugly hard thing slicing down the middle of his chest and stomach will be a constant reminder of cancer, and I hate that. It will ruin a physique that I adore and is completely perfect in my eyes.

How much will our lives change? I’ve been spoiled having Andy as a husband. He has taken on a huge part with raising our youngest. He gets up with him in the mornings, he gets him ready for school and gets breakfast made for him. Mostly just opening a pop tart and grabbing a cup of fruit or a banana and some cheeze its, lol Breakfast of champions! But HE does it and allows me to sleep. He brings him to school on his way to work and also picks him up on his way home. He does it not because I can’t, but because he wants to, and he enjoys it. How will all this effect our little routine-driven 4 year old when daddy can no longer take him to or from school? It’s just so much change all at once and it scares me.

We filed his advance directive and power of attorney paperwork with the lawyer this week. I refuse to go into this naive. I know that everything will be alright, but we need to be prepared for any situation. It’s bad enough having to think about estate planning and end of life planning when you don’t have cancer, but thinking about it knowing that you might need it sooner than later? Awful.

I guess I’m not going back to sleep tonight (this morning?) Too much on my mind.

Plan B

Where I currently find myself, staring at Plan B, which is scheduled for Monday, May 6th. A mere 2 days from today. This plan involves a surgery which has been dubbed MOAS, the Mother Of All Surgeries. It includes a cytoreductive surgery, plus the right colectomy and any debulking that needs to be done, combined with a procedure called HIPEC. It is a 12-16 hour surgery in which the team goes in and removes all (or as much of) the visible tumors as possible. They take each organ and inspect it for tumor nodes and resect (remove) as many as possible. Then they do a targeted chemotherapy treatment directly in the abdomen. Its awful. My husbands body will literally be spread open and his insides exposed for hours. The infection rate is dismal, the opportunity for something to go wrong is high. Its terrifying. But so is having stage IV cancer. What is our other option? Do a traditional chemotherapy treatment, which, I think, through the research I’ve done, I know not to be very effective for this PMP type of cancer.

I have good days and bad days. I am trying to stay as positive as possible but my mind is consumed with this barbaric procedure that my husband will have to endure. I’ve been trying to keep busy with work, but as soon as I start something, my mind immediately comes back to this. I am so lucky to have a job that supports me and is understanding of what I’m going through. I know not everyone is as lucky as I am in terms of flexibility and I cannot imagine having someone hold job performance over your head as you’re dealing with this. Like you don’t have enough to worry about. And me? My job? My P1 team and my opportunity that I had been working for, waiting for? That was on hold. In life you have few chances to choose the right thing. To prove to yourself and to the people who you hold most dear that they are truly your priority. My family is my #1 priority and there was no question in my mind, this wasn’t a choice. When they need me most, I will be there. Everything else gets moved to the back burner. Period.

What I am yet to understand is how this thing could have spread so uncontrollably with absolutely NO physical symptoms!! I mean, how does that happen? One of the reasons we were so convinced that Plan A was going to be our path was because my husband was completely fine! I mean, if someone had stage 4 cancer, you would think they would be exhibiting some kind of symptoms, right? You see people with stage 4 cancer on their death bed, not up, frolicking around with their 4 year old and living a completely normal life. How did this get so out of control so quickly? And why did they not resect it when they first saw it at the last surgery?? All these questions roll through my head with no time left to ask them before the surgery on Monday. I didn’t even have time to get a second opinion before all this was set into motion. Now, if we pump the breaks, we basically risk the cancer spreading more prolifically and being worse — a risk I am not willing to take. I am convinced enough and have enough evidence from the research I’ve done to know that this HIPEC is our best hope, so the fact that our doctor is using this as a strategy to attack the cancer is good enough for me at this point. But I am worried. I recently connected with a facebook group for people with appendix cancers, PMP and PSM. And the thing that EVERYONE keeps telling me is to get with a specialist who knows about appendix cancers. Our doctor does not, he is not an appendix specialist, but he is the only one in our area who knows how to do HIPEC and if we end our journey with him after the HIPEC and seek out someone who is more experienced with my husbands specific cancer, we do that. But we’re sticking with him through the procedure.

But what happens after that?

I didn’t get a chance to even ask that question. Never in a million years did I think I’d be in this position, but also, never did I think that we’d have to resort to Plan B, so I never asked any of the questions around Plan B — and what comes after it. Is it a round of traditional chemo? Has that recently been found to be effective? I have no idea what’s next.

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.