The Burden of Concern

I was reading something today on a Facebook post in my Appendix Cancer Support group. The person posting was worried about an upcoming CT scan (something we call “scan-xiety”) and, fearing the cancer was back, was wondering what others who had a recurrence had seen/felt/been through just prior to that 6 month scan. So others were helping her out giving their experience and advice, and someone had commented with a response that literally shook my world. She said that she has decided not to worry about her scans any longer. She emphasized that she is not being complacent by any means, and that worry creeps into her life at very random times, but she had chosen to let the experts carry the burden of concern. She said she was doing her part in following their recommendations and staying on top of appointments and such, but this has allowed her to live her life free from guilt.

The burden of concern. Wow. This spoke to me.

This week began (again) the chemo journey for my husband. Almost 5 weeks to the day from his last surgery, he’s back on chemo. The time off was GLORIOUS! Andy was feeling well, he was getting his strength back and I could see the light starting to return to his eyes. It was all I could hope for! There was little to no arguing, a VERY good thing for us, lol There were simple nights, there was consistency with schedules, there was no panic or concern for his well being or his health. We went on dates, he was energetic and we were connecting again like never before! And I wanted it to last.

The one thing we did argue about during that 5 week hiatus was him restarting chemo again in December. I wanted him to hold off for another 4 weeks so we could have the holidays and just be “normal” for a little bit longer. In my mind I was thinking that this could be the last set of holidays I could ever possibly celebrate with him. I know that sounds awful, and BELIEVE ME, I do NOT want that to happen, or even to really think about it at all. But. It’s a reality I now have to contend with and as awful as it sounds, if that is our future, I want these last holiday memories to be full of life and joy and I want him to be healthy, showing off that light in his eyes, that has been missing for so many months, for the kids and for me! On top of that, I just do NOT want to be all alone during Christmas. Being a single parent doing EVERYTHING while he sleeps for 70-80 hours at a time. Drinking wine, watching Christmas movies by myself. Shopping by myself. Creating memories void of him, all the while trying to keep a happy face on for everyone else, while inside I’m screaming and crying. It’s just a lot to handle and I feel like he is not doing anything to acknowledge that struggle. In addition, the efficacy of this chemo is basically SO low at this point, that waiting another 4 weeks to start this again in January would NOT have one iota of effect on anything. Haven’t we been through enough this year? Why couldn’t we just take this month and celebrate how far we’ve come, give thanks for all the small miracles that have happened, and rest and recoup for the next 6 chemo cycles to begin again in Jan? Why can’t we think of the surgery as a blessing in disguise and use the break it has afforded us as a MUCH NEEDED reprieve, and extend it through the holidays?

His argument against all that? “The oncologist advises we start as soon as possible.”

Ughhhh WHAT? You mean to tell me that the oncologist who we don’t like and have had problems with from day 1 is all of a sudden your single source of truth and your taking her word as gospel? You mean the oncologist who’s advice you have always taken with a grain of salt? You mean the oncologist who’s recommendations you outright ignore and continue to do what YOU want to do regardless of what she tells you will be best? You mean to tell me that now, right now, all of a sudden, THIS is the advice you are taking as prescribed without any qualms or questions or thought into how that might effect all the other people around you? You really, truly think that this, THIS one thing, this one suggestion is the single piece of advice that is going to make ALL the difference in your course of treatment? Is that what you’re telling me?

It was.

And regardless of how much I pleaded and begged and reasoned, he had made up his mind and there was no changing it. I just couldn’t understand why he would choose this ONE thing to hang his hat on. It felt vindictive. It felt like he was doing this to spite me or to do the opposite of what I wanted him to do to win some weird, twisted and completely unwarranted power struggle. I just couldn’t wrap my mind around it. It made absolutely no sense to me. But, as I’ve learned, this is his treatment and every step of the way, he’s done what he wants to do.

So we met with our therapist and we talked about this issue. I know she can’t take “sides” but I swear she was on my side on this one! I voiced my concern that I just wanted to be on the same page, and not only were we NOT on the same page, but we were in completely different books.

What does it mean to be on the same page? In my mind, I think of a team. A football team, for example. Everyone on the team has the same goal, everyone is aligned on how to achieve that goal and the plays are agreed upon and carried out by those who are ALL on board with that strategy. While Andy and I have the same goal, there is absolutely no alignment on how we get to the end zone.

While we didn’t come to a resolution during our therapy session, we talked a bit more that night, and to my absolute surprise, something amazing happened! We were getting back into it and I again talked about being on the same page. He was having trouble understanding what I meant by this. So I kept trying to give him examples, and he kept telling me that he didn’t understand what I was saying. It was frustrating. So, I tried one last time to explain to him what I wanted, and how he needed to take that, and re-purpose it to fit into how he did things. I gave one last ditch example. The week before all this, I was at my annual work conference and I ended up with the emcee job for our Innovation Summit. My coworker (who happens to be a HUGE football fan, just like my husband) and I had worked on the script together for a couple weeks. He ended up putting a few football references into the script. Now, admittedly, I am not a sports person, and although I had NO idea who those players were, and I felt sort of silly saying their names and talking sports during my speech, I knew they were players on a football team. I made that connection. So, I asked Andy to relate that to the conversation we were having. In the same way I was telling him how I needed to be on the same page, he needed to be able to take what I was saying and put it into a context that he connected with. And he did.

He took a moment, thought for a second, and then walked over to the stove. He pulled our small kitchen rug that’s positioned under the stove over to the middle of the floor and walked back to me. He took my hand, looked at me and said, “I’m going to tell you something and you’re not going to like it.” He led me over to the rug and we both stood on it. He said, “This is our page, and I need you to be on it with me. I don’t like this page, but here we are.” I immediately started bawling my eyes out. He gave me a huge hug and I told him that I hated this page, but I was on it with him.

It was a soft and tender moment that I needed. I reset my expectations and immediately began to come to terms with being on board with starting the chemo again the first week of December.

And everything was going so smoothly! We went to the chemo center on Monday, he got the infusion, was sent home with the chemo box and things were okay. This is round 7 for him and this whole time we have been warned that the effects of this chemo are cumulative and my husband really wouldn’t start feeling all of them until the back half of the treatment cycles. Welp, we’re there, and he’s feeling it. He’s basically been in bed since Monday evening. Other than the 8 hours he was at work on Tuesday, he’s been in bed. Its Friday. He’s still in bed. That’s 5 days he’s been in bed. He’s never been this laid up with his other treatments, so I kept asking him if everything was alright and how he was feeling. Now, I get that this can be annoying. I absolutely appreciate that. Honestly, the one thing I just CANNOT stand right now is when people ask me if I need anything or ask how I’m doing. I know they mean well, and I know they don’t know what to say, so they ask me and they think I’ll know what I need. But I don’t know either. I am always kind when people ask — but, really. Stop. I digress. So I basically equate the how are you feeling? question that I’m sure he gets ALL the time to my what do you need? question. And I GET that! I get it. But its one thing for my husband to ask me what I need, and its a completely different thing for a friend or neighbor to ask what I need. First off, I would LOVE if my husband would ask me that question (hasn’t happened yet) but find it unbelievably irritating when other people ask me.

So on Wednesday, all was well, I had a really good work meeting that morning and I went up to check on my husband in bed and found myself asking him a series of questions, How are you feeling, are you still feeling nauseous, are you ready to leave to head to the chemo center to get the box removed? Not a big deal, just trying to get a gauge on his well being that day. He said that he would need 10-15 mins before he was ready to leave and I inquired further about this time he needed, asking him why? I was thinking he might be in pain or was so out of it that it would take him 10-15 mins just to compose himself and muster up enough energy to get out of bed. Basically, I just wanted to know if there was something I could do to help. So I asked another question about why he needed all that time — which apparently set off an entire series of events which left me completely dumbfounded and lost.

He rolled over to get out of bed, headed towards the door to the bathroom, and he said over his shoulder to me, “I don’t owe you any information.” As he continues his walk to the bathroom I say in a very defensive voice, “Excuse me? What did you just say to me?” And the the bathroom door shuts.

I could feel my blood start to boil. Wait. What just happened? What the actual fuck is happening right now? You don’t owe me anything? EXCUSE ME? OMG! I was furious at this statement! It was completely unwarranted, absolutely out of place and, MY GOD, everything was going SO WELL!! What do you mean you don’t owe me anything? DO YOU KNOW WHAT I HAVE DONE FOR YOU???!! I mean, I know most everything I do goes completely unnoticed and unappreciated by him, but to be told blatantly, to my face, in an open statement, that he doesn’t owe me anything? Oh, I was livid. So I went into another bathroom and instead of getting ready to head to the chemo center I popped on my workout gear and got ready to head to the basement, where I have my home gym. You don’t owe me anything, huh? You’re right. I don’t owe you anything either, so why don’t you just take care of today on your own. I have better things to do with my time, I said to myself in the bathroom mirror, trying to come up with some comeback for this hurtful and reprehensible comment he just made.

I head down to the basement and start setting up for my workout that day, I’m moving the bench around and putting the correct weights on the bar. I’m getting my music setup and I get a text message, I see that its from my husband, but I don’t read it.

A few minutes later I hear the water run down the pipes from what I assumed to be a toilet flush. A minute or two after that, I hear my husband come down to the basement. He comes into the gym area where I’m still setting up and he stands there doing something on his phone. I look at him and I say “I will not be spoken to like that” and I start in on how absolutely uncalled for that statement was, all the while he’s still trying to do something with his phone. Irritated that he’s not talking to me, I just stand there and wait for him to finish his phone situation. He finally says, oh, got it and, not looking at me or making any eye contact, he holds his phone up. I hear a computer voice. Apparently he was downloading a text-to-voice app and it was reading aloud the text message he just sent me. Here’s what the computer voice said:

The information that I’m hiding from you, is that I have to poop. It’s not a good poop. It’s bad poop. I’d rather not tell you that, because I don’t want you to think about good trooper bad poop when we are being intimate. I don’t want you to think about smelling it, I don’t want you to think about me having poop on my balls. I would rather you not know about all the poop. But you seem to really wanna know about it. Because I don’t owe you information, I have a right to withhold certain items. I know you’re going through a lot right now, and I’m not going through too much at all, but I ask you to bear with me.

As soon as the computer voice finishes. He shuts his phone off and silently walks away.

This infuriates me even more than I was before. First off, I have SO many questions on what just happened here and what the contents of that text imply, but more importantly, I am NOT going through a lot right now, I was 1000% absolutely on board with ALL of this as of 30 mins ago, and NOW its all gone to shit — not because I’m overwhelmed with the situation but because my husband is being a complete ass hole!

So I follow up him the stairs, voice raised, telling him that I want to talk about this! That I didn’t understand what I had done and I was completely caught off guard and I was SO completely hurt at what he said. He calmly walks around the house gathering his things and as I’m getting more and more angry at this whole situation, he chimes in with little digs like oh, looks like I must have tripped another live wire, and other belittling comments about how I’m overreacting and he won’t talk to me when I’m like this. He walks out the door, gets in his car and leaves. He was going to the chemo center without me, and I was an absolute mess. I call my best friend and immediately start telling her what just happened.

It takes her a good hour to calm me down. She is probably the one person who’s advice I trust the most as she can see both sides of the story, frequently plays devils advocate and has a perspective that is unique. She lost her husband about 5 years ago in a tragic accident. She had 4 young children, the youngest being 7 months old at the time of his death. She knows what agony all this is on me and she might be the only person who can truly understand how I feel. She knows our struggle more intimately than anyone else on this planet, besides myself and my husband, and on this call, she gives me some advice that she had never given me before. She said that it was time to give him what he had been asking for this entire time. The thing I had been fighting against tooth and nail because it goes against EVERYTHING that I am. It’s basically asking me to be a different person, to change my entire thought process and compassion model and literally everything about how I do anything.

She was asking me to let go. She reasoned that my husband had told me time and time and time again that he didn’t want my help, he didn’t need my support, he didn’t like any of the ways in which I was attempting to encourage or empathize or champion his care. His actions have spoken louder than any words could. And she was right. He was constantly pushing me away and in turn, those actions told me I wasn’t needed. But I WANTED to be needed, I WANT to help him! The reality stands tho, he doesn’t want my help. Not when he’s feeling sick, not at doctors appts, in fact, he rarely wants me present anywhere, even when he’s on the phone talking about his treatment. The questions I want to ask his care team he finds irrelevant and won’t allow me the opportunity to ask. The hours of research and studying I have done to find second opinions and learn as much as I could about this cancer and how to combat all the symptoms of the awful treatment, he completely disregards and dismisses as unsubstantiated nonsense. The organizations that I have found which offer support and give advice for those faced with this diagnosis, he has no interest in reaching out to or connecting with in any way. He pays no attention to how his decisions will impact me or the kids or anyone else, for that matter. He simply wants to be left alone in this. …Except for maybe when he has a bowel obstruction and needs a ride to and from the hospital. Great. Now I’m a taxi.

So here I find myself. Less than a week ago, my husband and I shared this amazing moment where we were finally on the same page, and now — we’re again in different books. And I’m struggling with a decision I have to make. How do I stop caring? How do I stand back and just watch this happen from the sidelines? I am finding this internal struggle to be one of the most difficult things I have ever dealt with. But what choice do I have? Continue on like we have been? Fighting against eachother, me on one side wanting to give care and support. Him on the other side telling me to go the fuck away, he doesn’t want my help? They say the true definition of insanity is doing the same thing and expecting different results. I know what the next 5 months will be like if something doesn’t change. I can’t expect him to change, I know that won’t happen, so I have to be the one to completely change who I am, with the hope that it will only be temporary until this treatment is over. But still I am struggling, and that’s why this concept of handing over the burden of concern really piqued my interest. Sure, the original idea was about anxiety over scans (scan-xiety), but it is a direct parallel to my current situation. Handing over the burden of concern to my husband is something I never really entertained. Mostly because he doesn’t feel any type of burden by this diagnosis and just keeps on keeping on completely unphased. I have been the one to carry all this on my shoulders, but I have to question, is that the right place for it? Especially since there seems to be no slack being taken up by him. I’m coming to the realization that I’ve been shouldering all this on my own for far too long and maybe I just need to place that burden on someone else. My husband, the doctors, anyone else except me.

Im not sure how I’ll navigate this next part. I’m scared because on one hand, I want to remain in control and know the information, such as my husbands ANC levels, his test results, his weight, his tumor markers, all this which has been my coping mechanism and has helped tremendously throughout this journey! Especially since my husband doesn’t talk to me about this and I’m fairly certain he won’t share any of these stats with me … he probably doesn’t even take note of them. On the other hand, I want to let go, give him what he has been asking for and not have to constantly worry about this. I want peace in my life and to be free from this battle between me and my husband fighting against eachother.

I hate this. There is not an option that brings me peace or happiness in any way. It’s basically a choice between constant outward struggle between me and my husband or constant inward struggle between me and myself. I don’t know what to do.

An Oncologist and a Patient’s Wife Walk Into a Bar…

I think I’ve heard that one before. It was funnier when it wasn’t actually my life, lol But legit, I ran into Andy’s oncologist in a bar last weekend! No, I didn’t say anything. If you recall, Andy and I don’t really love her, so no, I didn’t say anything when I saw her. But I’m 100% certain it was her, lol I wish that story had a funnier ending.

As I predicted, we went in for Andy’s chemo treatment #3 on Monday and his absolute Neutrophil count was again too low. It was 0.8 this time, we need it to be at least 1.0 to be eligible for chemo. I hate it when I’m right about these things. –No I dont. I actually love that I can predict and anticipate what is happening here in reality while Andy frolics in lala land. In some weird way, it feels like some sort of credibility or something. Cancer street cred.

Yea, I’m cool.

Anyway, Andy received the Neupogen shots. He had his first shot on Monday, second on Tues and he finished off the series today. He crashed Monday night, Tuesday he attempted to cut the lawn after he came home from work, but came in half way through saying he was exhausted. (Yea, dummy. Why did you think you could cut the lawn? Just another project started by my sick husband who thinks he has the energy to do things as normal, but fails miserably at follow through on just about everything he begins these days. Add finishing the lawn to the top of the list after cleaning out the garage, power washing the driveway, replacing our front door bell, mulching the landscaping and staining the deck. … Guess who’s left to complete/clean up/finish all these projects he begins and is too exhausted to end? Yep, me. Guess how I feel about that?) So today he came home from work and went straight to bed. Lovely. Another night alone. Just me and my glass of wine! At least the dog is content with my husband being in bed 75% of the time. Note the bruise on the backside of his arm. That’s from the Neupogen shot. Since he has no white blood cells, he bruises really easily and anything he brushes up against turns into a bruise immediately. So a needle poked into his arm? It’s a bruise. It’s awful, but it’s reality.

I should stop complaining because really, things have been okay recently! We are happy to have another week off of chemo, tho I was concerned about these Neupogen shots, just another unknown, but they haven’t been that bad. The side effects are just more exhaustion than physical symptoms, which I will take 100 times over seeing my husband in pain. I cannot take it when he’s in pain! But now that we are through the shots, I feel like I can breathe a little bit. We have our 4 year olds 5th birthday this weekend, (side note, I guess I’ll have to stop calling him “the 4 year old,” lol) so I’ve been deep in party planning mode for about a week and a half. I LOVE planning parties! I feel that small details make all the difference and I try my hardest to make birthdays special for the kids! Even the awful teenagers, lol Our almost 5 year old (see!!??) is very much into Mickey Mouse right now, so I am planning a Mickey party!

I’ve been trying really hard to keep busy. I finished a window casing project that was on my really-want-to-do list for about 3 years, and then I had a wall stenciled to top it off! I mean, it looks AMAZING! And I look at it everyday from my office chair, so I really get the opportunity to appreciate all the hard work I put in! Every time I glance that way, I get this warm smiley feeling. Since I work from home, I see a lot of my house, so small changes in the mundane scenery make a HUGE impact on my entire sense of well-being! Might be bizarre to hear, but, my dining room makes me SO happy!

Speaking of work, I’ve been included in our bi-weekly leadership meeting. Possibly by accident or with the intention of it being temporary, connected to the P1 initiative, but my invite hasn’t been revoked, so I’m happy to get some face time with the big dogs! I work with some SMART people. Like, literal NASA rocket scientists, and I am humbled to be included in that mix. I’m not of the school smarts background, but what I do well, is people. I’d put my people skills up against any of our top AE’s or PM’s in my company. I have a way of connecting with people, regardless of their background, and finding a common link to launch a relationship off of. I can also fake the talk, not really “fake,” but I don’t actually have a full technical understanding of a lot of the things my company delivers, but I know the jargon, and I know when and how to apply that to a conversation. And that, my friends, is what makes me a good people person! Regardless, I’m including myself in the leadership team and I am going to seize every opportunity I can to inject myself into the conversations and projects that come up. Until I am told to leave, I will stay and prosper! We’ll see how long this lasts, lol

I’ve also been keeping up with my macros and my exercising. This really keeps me grounded and helps my anxiety tremendously. I wish there was some way I could convince Andy that exercise and eating healthy are important for him, along with taking his vitamins … which, he has recently been refusing to do. Its infuriating beyond explanation, but I’ll spare you the 2 hour conversation that I’ve subjected my best friends to about vitamins, and leave it at this; I will not stop trying. I can’t. I care too much, I love him too much to just throw my hands up and say Fine. You win. Nope. Because doing that would basically be asking me to go against everything that I am. So nope. That’s not who I am. That’s not who I want to be. That is not what I will become. I will stay the course. I will fight against all the odds for my husband. I will spare no expense so he can be well. I will exhaust all options. I will continuing researching relentlessly to explore ways to minimize the effects of the chemo or to find other treatment options if need be. I will not rest until this whole situation is just a bad memory in a series of amazing life experiences that we look back on when we are 85 years old, sitting in our rocking chairs, on our front porch, watching the grand kids play.

That is our future.

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.