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.

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 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.