Type A AF

Ughhhh. You know what I can’t stand? Not being in control. You know what is completely out of my control? Cancer. My good friends coined the phrase “Type A AF” to describe how I am. I dig it. Anyway, I just got back from a run (I am an avid believer in exercise, whether running outside, using my Sweat app or doing a pre-programed run on my treadmill, it keeps me sane and gives me a place to safely distribute negative energy) and my husband is on the phone with someone. I come in, sweaty and breathless, after pushing the last minute at a close to sprint pace, and head towards the office where he is sitting talking on the phone. I mouth the words Who’s that? and he tells the caller to hold on, then mutes the phone and says, Its a case worker from UHC. Immediately interested, I start to listen in to the conversation. He knows Im interested in whats being said, he knows I feel completely helpless and out of control when he takes these calls and doesn’t allow me to hear or have a word in the conversation, but sometimes he has this I-don’t-care attitude. And he has that now, he gets up and walks out of the office.

Ok. Well, I’ll follow him, I think to myself. Not intentionally follow him, but moving about the house to the places he is. He’s a pacer when he talks on the phone, he can’t sit in one spot and have any conversation. He walks around like a zombie, unaware of where he’s headed, without a care, just aimlessly walking. He ends up going to the back of the house in the mud room, so I go back there to drop my headphones and runcase for my phone — where, mind you, I keep these things, and when he sees me there, he gives me this, humpf look, throws his hands up and exits the room. Like he doesnt want me to know what’s being discussed or otherwise doesnt want me to hear. Ughhh I am immediately aggravated that he doesnt want me included in whatever conversation he’s having. I’m sure it was not really an important conversation, but that’s not the point. We had this happen once before when I requested a conversation with our surgeon the week before the surgery. A conversation with the person who was about to cut open my husband and slice and dice for hours. Andy did not have any questions, but I had a whole slew of questions I wanted to ask, and some of them Andy deemed as “not important.” I, however, thought they were all vitally important and I wanted to ask them regardless and hear the doctors response. So we took some time to write a list of questions. It was a bit of negotiation between what I wanted to ask and what he agreed to having me ask. Whatever, I got the majority of the questions I wanted in. The next day my husband calls me on his work cell because he had the doctor on his personal cell and he wanted me to be included in the conversation. Ok, awesome, only listening to the convo, I could tell that this was not the beginning of the conversation, it sounded more like the end of the conversation. So he asks me to read off the questions as we wrote them down on the sheet of paper. I start to read them off and Andy gives me this, we already talked about that response, next, he’d say. When I pushed that I wanted to hear the answer from the doctor, not the version that he would tell me later, he hung up on me. Like, legit hung up on me! I was LIVID! How could he take the call that I requested with the doctor and not give me the opportunity to ask ANY of the questions I wanted to ask! I was so pissed off at him, I took all his shitty cancer paperwork that he just spent 15 mins organizing in a leather binder prior to leaving the house, and literally threw it at the front door.

It was not my proudest moment.

The papers went flying everywhere. I sat there fuming and agonizing about the fact that I was not going to have my conversation with the doctor. I was not going to hear the doctor answer my questions and ask any applicable follow up questions that may arise because of the answers given. I wasn’t going to have that chance. And I was furious.

When he got home we had a pretty big argument. As I said, it wasn’t my proudest moment, it wasn’t our proudest moment as a married couple, but I felt completely brushed aside by him, like the questions I had were so unimportant that he just shrugged them off and didn’t care what I thought. That is what hurt the most.

Honestly, that’s kind of how I feel now. Sure, maybe the conversation wasn’t important, but damnit, I deserve to be included. Hell, I know more about his diagnosis and what the plan is and how to articulate all of that more than he does! He still can’t even remember the name of his type of cancer. Mu-ci-nous Adeno-car-ci-noma. I get it. It’s a big ugly word, but come on. Take some ownership in this. With everything I’ve given up for him, HAPPILY, I am not saying I have not happily done everything I’ve done for him, I have, and I will continue to, but a little thoughtfulness would be appreciated. At least to have enough respect to let me hear a conversation that interests me about the man that I love more than anything on this planet.

I get it. This is not really a big deal. You’re probably sitting there thinking that he has the right to have a conversation about his medical condition with someone in private, and you’d be right to think that. I mean, to be honest, after I get a bit of distance from this incident, I probably will too, it’s just right now, in this moment, I feel slighted. Like I have a right to the same information too. We are, after all, in this together, so what he knows, I know, what I know, he knows.

Listen. It’s HARD AF to be a caregiver. Here I am, basically waiting on him hand and foot, catering to his every whim —

Honey, our ice maker isn’t making ice fast enough, can you go out and get a bag from the store? Honey, a couple weeks ago I dropped off our basement TV at a TV repair place 30 miles away, and now its ready so I need you to go and pick it up. Honey, can you refill my water? Honey, can you hand me my pills? Honey, I dropped my phone on the floor right next to me and I need you to pick it up.

You get the picture. It’s exhausting, and a little thank you would go a LONG way. So, when a call comes in regarding his care, the control freak in me screams to be included in that conversation! It’s literally the only control I can have in this whole situation and he just rips that away from me! Andy and I have very different personalities which compliment eachother so well, most of the time, but sometimes, we struggle with communication because his needs are VASTLY different than mine. And him, relying on me for basically everything at this point, just exacerbates that difference and its hard. I am, admittedly, Type A. Type A AF. Complete control freak, need to plan, need to have a strategy, need to know what comes next. Andy, however, I wouldn’t even classify as Type C, he is so relaxed and laid back about everything, its infuriating … and delightful all at the same time.

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.