Tag: support

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.

The Awful Journey Begins

If you’re going through hell, keep going. — Winston Churchill

It all started on a random Tuesday. It was a completely normal day. My husband, Andy, went to work that morning, dropped our 4 year old off at preschool. The big kids went to school. Nothing weird, nothing out of the ordinary. We had been bickering a bit the past week or so, as normal married couples do, he probably loaded the dishwasher wrong again and I got all pissy (I cannot be the only one who demands the dishwasher be loaded in the most space-efficient and wash-efficient way possible!?) Either way, he got home from work that Tuesday evening on March 26, 2019 and told me he didn’t feel well and went immediately upstairs to bed. I was a bit thrown off when he said this since he was completely fine when he left for work, but, whatever. He was going to be sick.

A thing you need to know about me — I am not what you would call empathetic in certain situations. I have a TON of empathy for a lot of things, but for adults who “claim” their sick, nope. None. Put on your big boy pants, throw some pills down your throat, be an adult and move on. That’s my exact thought process when I hear the phrase “I’m sick” muttered from the mouth of an adult. I’m not entirely sure why I feel this way? Maybe its because I don’t really get the luxury of laying in bed being “sick” for a few days (which sounds like a vacation to me!) I have to get things done, like care for the kids and make them food, pick them up from school, take them to practices and games, and do baths and put them to bed. All things I don’t just get to opt-out of because I’m “sick.” So, boo-hoo, you’re sick. So what, suck it up buttercup and do your part.

So you can imagine how I felt when he stayed in bed for a full 36 hours. Didn’t get up to eat, didn’t get up to check his phone, maybe got up to pee, but I never witnessed that.

I had just been given a HUGE opportunity with my company, to be included in what they were terming our #1 Priority (P1) item for the next quarter. They wanted ME to be a part of a 3 person team to help lead the effort to define, solve for and implement the strategy to address our P1 item. I had been positioning myself over the course of the past 4 years with my company to be ready for this amazing leadership opportunity once it happened … and it was finally happening! I was AMAZINGLY excited! I had FINALLY been given a seat at the table and all I needed to do was to seize the moment! Why am I telling you this? Because, as luck would have it, our little P1 3-person team had decided to do an in-person workshop (we all work remotely from our home offices, so actually seeing my colleagues in-person was a pretty rare occurance) where we could more effectively strategize on how we were going to approach the problem. We decided on 2 workshop locations, one in St. Louis (my home base) and one in San Francisco (the home base of one of the team members.) The St. Louis workshop was to be held on March 28th and the San Francisco workshop was the following week.

March 28th, a Thursday. I was having the team over to my house for the workshop. I NEEDED this to be a success. I could NOT have my “sick” husband disrupt this opportunity for me, and I told him so. Since I had not actually seen him in any form of an awake state since that Tues evening when he came home from work, I sent him a text message:

Don’t forget, tomorrow is the day I have one of my company executives and another very high level coworker coming over to work on this Account Success planning project. This is extremely important to me that everything go smoothly tomorrow. So if for some reason you are still feeling sick, I need you to put on your big boy pants, take some meds and deal with it. Ok?? Love u!

That’s what I said. That’s exactly what I sent. Looking back, I’m an asshole. But how was I to know?

Thursday morning came, and my husband finally got out of bed. He was hunched over, I knew immediately that something wasn’t quite right. But he looked at me as he was rolling out of bed and said that he had promised to help that day, regardless of being sick, so he was making good on that promise. He took our 4 year old to preschool and when he came back home, he told me that he was going to urgent care because something wasn’t right. Again, I was a bit peeved that he was making such a big deal about what I thought to be nothing, and I was also peeved because we had HDP (high-deductible plan) insurance and we would have to pay out of pocket this entire episode he was having. But, ughhh. Fine. Go to urgent care.