A Perfect Day Date

While not “technically” a makeup date because we did not “technically” discuss the fight, Andy did surprise me with an amazing, out-of-the-blue day date! And it was SO needed!

Last Saturday, a week, to the day, after the fight, Andy popped out of bed feeling much better. He usually does start to feel better on Saturdays, but this Saturday came with an unusual amount of energy! I’ll take it! He let me sleep in, getting up with the 5 year old at the crack of dawn, which isn’t that out of the ordinary, but either way it was much appreciated! So when I finally awoke and got downstairs, I smelled the coffee, I heard the laughter and I saw the two boys, my husband and my youngest, monkeying around. They had made a fort and although the living room was a complete disaster and all the chairs from the kitchen table were now laying upside down on the carpet, positioned underneath what looked like every single blanket in the house. It was a complete mess, but to my surprise, I didn’t care! It literally made my heart soar! I couldn’t believe the energy I was seeing from Andy! It was amazing. I bet he hadn’t felt that good in weeks! So when my mom called to tell me she was coming over to pick up the little monster and take him for the rest of the weekend, I was elated! I love my children, all of them, I love them all for different reasons and because of different qualities, but I also love when they GO AWAY! And that is nothing to be ashamed about. My sanity is WAY more important to me than any outdated and misdirected notion that you must enjoy your children every second of every day. Ha! That is definitely not me. There are PLENTY of times that I do not enjoy my children, especially the teenagers these days (rolls eyes) but to get a weekend off??! That is paradise!

So mom comes over and picks up crazy man, who is more excited about spending the night at Grandma’s than any child possibly should be, lol And when they leave, Andy and I wave goodbye, and look at each other with a snarky brow raise as if we’re pulling a fast one over on my mom and giving each other an imaginary high-five at the thought of being rid of the little dictator for a few days! WOO-FUCKING-HOO! As soon as they are out of view, we walk back in the house and Andy asks, Do you want to do something today? Ummm, Yes! I say, excitedly! I tell him that I want to workout real quick and then we can go after I shower. I sense that he has something planned and he doesn’t want to tell me what we’re doing, which is okay by me since I LOVE surprises! So that’s what I do, and by 11:30AM, we’re ready to head out the door.

We hop in the car and we head to an adorable part of the city called Clayton. I LOVE Clayton! I used to work there and I just loved being in that area! They have amazing schools, there is always a big, new, up-and-coming restaurant opening, there are parks, there are old houses with TONS of character and charm, there is a Whole Foods nearby!! Its like a dream! If only we could afford to live there, lol I’d move in a heartbeat! So, we hit this restaurant called Louie’s Wine Dive, which I had been to before, but never for brunch! So we start with some drinks and we actually never get to the food! Had I known we were going to brunch, I would not have eaten before we left, but oh well, I was happy to be out on the beautiful day with the man I love the most, just doing some day drinking! It was wonderful! Purely wonderful!

So as we’re sitting there, Andy pulls out this “license” he made for me. It was SO adorable and so thoughtful and just such a cute thing to do!! Its like when you are first dating someone and they do cutesy things for you. You know, you don’t really do those cutesy things anymore when you’re married, well, maybe to an extent, but this was like over the top cutesy! I was floored and I loved it so much!

So we went on to our next stop, a photography exhibit at the Art Museum that I mentioned I wanted to see! We spent about an hour and a half in the exhibit, just looking at the pictures and then roamed the museum for a while longer, until I noticed Andy starting to slow down. I asked if he was okay and he admitted that he was losing steam. Really not wanting this day to end, but trying to be understanding about his condition, I ask if he wanted to head back home (hoping he’d say no…) and he said yes.

So we walk back to the car and I’m a bit disappointed, but then I stop myself and start to think Why?? I tell myself that we just had an AMAZING afternoon together! Sure, it might have only lasted 3.5 hours, and yea, it would have been nice to parlay this beautiful day date into an evening dinner date, but Andy planned all of this just for me! He even drank a Bloody Mary with me! And so I started to cheer up and turned my disappointment into gratefulness. I offered to drive home and as soon as we get to the highway, he is out cold, lol Sleepy man. Side thought; I totally don’t get this exhaustion thing. I mean, the man had literally been in bed, asleep, for the prior 70ish something hours leading up to this day!!?? How could he still be so tired? I mean, I ran 2 full marathons, like the full 26.2 miles, and I wasn’t anywhere NEAR this exhausted after doing that. Cancer confuses me. I’ll never know. I don’t get it. Also, doesn’t matter.

So Andy naps on the way home and I get a brilliant idea to participate in this goofy Chick-fil-A vs. Popeye’s chicken sandwich challenge, lol Its a stupid Facebook thing that had been going around for about 24 hours. Since I’m always up for a good food challenge, I thought this might be a fun something I could do to sort of extend this day date in a home-bound way. So I drop my husband off at home and I head out to grab the sandwiches. We recorded the taste test and it was ridiculously silly! lol But it was another fun thing we got to do on our day together!

I do try to make the best of the situation and although sometimes I fall into a bit of self-pity, poor-me mentality, I really try my hardest to find the positive in the hand we’ve been dealt. I can’t change this situation. I can’t go back and make it disappear and, for the most part, I can’t effect the outcome of what will happen. So I try to live life in a positive light. I am, after all, hopelessly optimistic by nature, I don’t think this experience has changed that. I just think that sometimes reality hits you hard and forces you to evaluate or re-evaluate a lot of things.

After finishing our food challenge (Chick-fil-A won, btw) we spent the rest of our day on the couch. It was relaxing and both of us were content and happy. I had an AMAZING day and I told him so! I told him how much I appreciated what he did and that it meant a lot to me! I went to bed in a wonderful mood and I woke up the next morning in a wonderful mood! Until I realized that my husband hadn’t come into bed with me that night.

You know what that means.

He was smoking. Ughhhhh I went outside to check for ashes on our concrete patio in the backyard where he sits and smokes. And there they were. Like cold hard evidence discovered in a murder case. I immediately start fuming. I am again disgusted. So all morning I sit and stir, unsure of what to do. Do I say something AGAIN? Do I let it go? We just had an AMAZING day yesterday, do I ruin that just to say something about this? Is that worth it? He knows how much I HATE his smoking. He knows my stance and viewpoint on this. I cannot make it any clearer for him. So the day passes and I just ignore him. I do not approach him or say anything to him. I think he knew what I was upset about, or maybe he didn’t, he is infuriatingly oblivious most of the time. Either way, we go almost all day with barely a word said. In my head, all day tho, I was trying to figure out a different approach to bring this up to him. In my mind I would fabricate conversations and try to figure out what the outcome of those conversations would be. And no matter which words I used, or which stance I took, I always came to the same conclusion — it wouldn’t matter.

He is not going to stop smoking.

Not for me, not because he has cancer, not for his child, not for his life. So I decided to turn my focus inward. How do I help myself come to terms with this? I still don’t know what to do to help myself. Here I am, almost a week after that, and I wake up this morning to find my husband not in bed again. I know he smoked last night, I see the cigarette butts on our patio. It STILL infuriates me. I don’t know how to let it go, it means SO MUCH to me. But I have to stop focusing on him, and getting him to stop, and getting him to see the light, and getting him to change his ways. He has seen the light, he just doesn’t care.

I still do. I’m so stuck.

Geneticists and Supplements

Quick update. We met with the geneticist yesterday who was, simply put, awesome! Both Andy and I loved her! She was kind and caring, she told us that we were the most proactive consult she’d had in a couple months! Which, made me feel amazing — since I’m basically the only reason we’ve been proactive, lol

The information she had to offer was profoundly interesting, especially since I’ve become a bit of a medical terminology nerd, she had a lot of fun new facts to whet my appetite for this kind of data! She looked at the genetic testing we had done on the tumor itself and rattled off some specific syndromes associated with elevated markers that she’d like to include in Andy’s genetic testing panel. As I said, it was incredibly interesting for me. Here is what the testing on my husbands tumor revealed:

KRAS – Mutated, Pathogenic Exon 2 | p.G12V |c.35G>T
ERBB2 (Her2/Neu) – Negative | 0
Tumor Mutation Burden – Intermediate | 9 mutations/Mb
PTEN – Positive | 1+, 35%
PD-L1 (SP142) – Negative | 0
TP53 – Mutated, Pathogenic Exon 5 | p.P128fs | c.383delC
MYC – Amplified
Therapies listed with “Lack of Benefit”
- Level 1 category: cetuximab, panitumumab
- Level 3A category: lapatinib, pertuzumab, trastuzumab

She kept in mind the reason behind us seeking additional genetic testing on Andy himself (as opposed to on the tumor, which is what you see above) — our children. If Andy has something that can be passed down, we want to know so we can be overly proactive in treatment for that. She recommended a pretty extensive panel, a bit more than she would normally recommend because we are essentially missing half of Andy’s genetic story. My husband is adopted, and even tho we have recently (in the past 5 years) connected with his birth mother and her family, we still have no clue about his birth father. We cannot find him no matter how hard we look. So we have a big black hole for that part of his genetic past, hence the broader panel, to check for quite a bit more than the typical person who can trace family history back a couple generations on both sides of their gene pool.

She recommended an additional step for us as well, blood banking. In her words, Andy has a “really big cancer” and if this genetic testing comes back as completely normal or inconclusive, it doesnt mean that in 10-20 years, when technology has progressed even more, they won’t find something that can be the reason he got this, and possibly offer a cure or additional insight. But, we have to have his genetic code in order to do that and if the worst happens, and he is not around in 10-20 years, blood banking is the only way to continue testing when technology catches up. This seems like a morbid thing to talk about, and our geneticist made it clear that she does not take the conversation lightly and she doesnt give this option to every patient in every consult, but she was offering it to us because of the rarity of my husbands cancer and the “big-ness” of it. Take that for what it is, but we ARE planning on banking his blood. So let’s not think about it and just do it. You can never be too prepared.

On a completely unrelated topic; When we were in Houston speaking with the oncologist, he said something that really struck a cord with me, and as I’ve sat with it for a few days now, it’s really been making me think. When I asked him about things that we could do to get Andy’s body prepared for chemotherapy, or to increase the efficacy of the chemo, he said a low fat diet. Ok, well I guess that is info, lol but then he said something about supplements. I have been a bit of an organic food & supplement fanatic over the past 3 months since all this started. I was introduced to the Medical Medium and his celery juice craze, and since doing some research and listening to podcasts and reading a ton of material about plant based diets and supplements and vitamins, I have completely bought into it. So I have exponentially upped the fresh fruits and veggies I buy and have tried hard to incorporate them into my family’s diet — but especially Andy’s diet. Now, I’m not a crazy person, we still eat meat, I still cook bacon if my kids ask for it, but I have decided to switch to mostly organic produce and meat. Yes, its more expensive, but you know what is MORE expensive? A $129,000 hospital bill. Yep, $129k. That’s the bill we got from Andy’s MOAS surgery. We don’t have awesome insurance, but in times like these, THANK GOD for health insurance! I digress. In addition to my new-found organic way of life, I also have my husband on a fairly strict regimen of Juice Plus gummies and daily vitamins/supplements. They go something like this:

Andy has complied (begrudgingly at times, lol) with my request that he start taking these vitamins at least 4 weeks prior to starting chemo. I have tried to get him on board with the celery juice, which I do every morning, but he has a problem with the fact that he can’t (well, isn’t supposed to) eat or drink anything for 30mins after drinking the juice for it to be effective. So I have stopped pushing the celery juice in favor of keeping him on the supplements. So far, I have been met with only a little resistance, but he continues taking them anyway, so that works for me 🙂

Back to my point, the oncologist at MD Anderson in Houston said that there is a lot people can do to prevent cancer, but the preventative advice — where you are being proactive and hedging against getting cancer, is VERY different from the advice you should be following when you HAVE cancer. And that really resonated with me. I think far too often people think these 2 are one in the same.

Think about that. The things you do to try to be healthy, eating right, taking supplements and vitamins and living an overall decently (hopefully?) healthy life are DIFFERENT than what you can do for yourself after you are diagnosed with cancer.

Honestly, it never occurred to me that the things you would do to try to prevent cancer are very different that the things you should do once you already have cancer. These supplements, I have learned, sort of fall into the preventative world. There is physical research that 4000iu’s of D3 per day is helpful in aiding successful chemotherapy outcomes for colorectal cancer patients, but the majority of these other things are really on the wrong side of the cancer equation.

And this is where people get confused. You hear about people who refuse cancer treatment by tried and true PROVEN techniques in favor of a vegan diet or acupuncture or some alternative medicine that includes herbs and supplements to try to cure their cancer. Listen, I am not one to judge anyone, but if you are refusing treatment because you think your sister’s best friend’s uncle’s grandpa who was in Vietnam during the war and came across a healer who told him the secret to healing, and you think that secret will cure you of your cancer … you’re doing it wrong. These things WILL NOT CURE YOU. They may prevent you from getting cancer, but once you are already in that statistic, it’s a whole new ballgame.

Does that mean that I’m going to have my husband stop taking the supplements? Nope. Not at all.

Am I going to encourage him to continue taking these WHILE he is also doing chemotherapy? Yep. Yes I am. Here is the thing, none of this is going to hurt my husband while he is on chemo, and getting his body prepped to take the chemo a little bit better, even if its just a psychosomatic response, is okay with me. Plus, I’ve never got him to take a supplement before in my life, so I feel quite accomplished in my persuasive skills that I’ve been able to get him this far. 😉 You know what WILL hurt and has been proven to hinder the efficacy of chemo? You guessed it. Smoking. Now, if I could only get him to QUIT SMOKING! face-palm

Up In Smoke

You know what I despise? Cigarettes. I hate smoking, almost as much as I hate waiting. I hate the way it smells, I hate the way it lingers on your body and breath, I hate the way it makes you feel. It has been proven to give you cancer. Likely not good for someone who already HAS cancer. It’s just BAAAAAD for you! I hate it. I hate that my husband is a smoker. Not a legit smoker, he doesnt wake up in the morning and smoke, he doesnt smoke after he eats, no, not that kind of smoker. He only smokes when he’s drinking and he will only drink by himself, alone, at night, thats his m.o. But he smokes. Its disgusting. He’ll watch the game (football, baseball, hockey, take your pick) on the replay so he can fast forward through the commercials and boring parts, drink some beers and smoke a half pack of cigarettes. Gross.

So when all this started way back in late March, he quit smoking. He told me he didnt want to do anything to give this cancer any more fuel than it already had, and smoking certainly fell into that category. I was elated! I had been wanting him to quit smoking for a decade! He had tried before, many times, but was unsuccessful. So for me, the ONE good thing that came out of all this terribleness, the ONE good thing, was the fact that he had finally seen the light and quit smoking. It was an amazing relief for me to be rid of that worry in my life.

Until this weekend.

Come on. Are you fucking kidding me?

One of my best friends, Sarah from San Francisco, sent me this amazing box of thoughtful things that she loves and that she thought I would love too! Just little things that she hoped would make my stress levels a bit lower. It had popcorn, chocolate, some yummy granola, a candle, a bath bomb, some stones that she found for healing, and the sweetest handwritten card. I mean, adorable! I paired it with a nice bottle of wine 😉

So on Friday, I go to light the candle my friend had sent me. I reach for the lighter which I just put in our secondary junk drawer in the kitchen (yes, we have a primary junk drawer and a secondary junk drawer … doesnt everyone?) I knew the lighter was in there because I had just gone through and organized it the day before, so I KNEW what I had in there. The night before was a playoff game for the Stanley Cup. Our hometown team, the Blues, were playing and this is a HUGE deal in St. Louis since the Blues have never won a Stanley Cup before. I’m not a hockey fan, but when your team is in the playoffs, you pay attention.

Andy had taken our 4 year old to the circus that night, which he bought tickets for weeks ago, before we knew when the playoffs would be or even if the Blues would make it. Regardless, he went to the circus with the kiddo instead of watching the Blues game. They got home late and he had sent me a text prior to getting home:

Whatever you do, please dont tell me anything about the Blues game. I’m going to come in and put the boy to bed and chill the fuck out. Everything in the last hour has not been set up stellar with a tired boy

Ok, not a problem. I was already in bed anyway when they got home around 10:30pm. He did exactly as he said. He came home, got our 4 year old in bed, came into our bedroom, gave me a kiss, said “Love you” and closed the door behind him as he left the room. Something about the way he left had me thinking that smoking was a possibility that night, but I brushed it off and told myself that he was smarter than that, and besides, why would he throw 10 weeks of no smoking out the window? Then I went to bed.

I woke up the next morning and he was not in bed next to me. This is what he would do when he smoked. He would sleep on the couch, either in the family room or in the basement, after he showered the smoke smell off. He knew I could smell it as soon as he would walk into the bedroom, so he wouldn’t sleep in the same room as me. He knows I hate it when he smokes, but that had never stopped him before — I thought being diagnosed with stage 4 cancer might stop him, but I was wrong about that too.

I knew exactly what was going on when I woke up that morning, but again, I brushed it aside thinking I had to be wrong. Fast forward to me lighting the candle. I reach into the drawer where I KNEW I had put the lighter and it wasnt there. Andy was on the couch so I asked, hey, do you know where the lighter is? He said, yes, I do. Then I asked the question. Are you smoking again? He said, yes. I asked why and what could he have possibly been thinking. I told him that he had thrown away 10 weeks of not smoking, and for what? He couldnt give me a good reason. I told him that we needed to talk about this. I told him that I was taking this as a personal slight against me and against EVERYONE who was sending him well wishes and healing prayers. A personal slight against everyone who had donated money to us and had sent us cards and made us meals and worried about his condition and his health. I asked him if he knew how anxious I had been about everything and now he’s adding yet ANOTHER thing to the list for me to worry about?! Fuck that. I mean, when one is diagnosed with cancer, rare or not, and people are giving you their sympathy and help you in all these amazing ways, it’s almost an unspoken rule that you, as the one with cancer, must ALSO do everything in your power to not let the cancer grow or spread more…or do things to give yourself more cancer. You are obligated to do EVERYTHING you can to attempt to prevent the cancer from growing any more, this doesn’t only include things like seeking out experts to help and doing surgery and chemotherapy, no. This also includes things such as dietary changes, lifestyle changes (such as more exercise or meditation.) It includes taking vitamins that might help stymie the growth or help with prevention of symptoms that you may have. It includes avoiding things such as smoking which might feed the current cancer or cause a completely different cancer to grow!! Ughhhh Does he remember when he told me that he was not going to do anything that would possibly give this cancer a leg up? He owes an apology to literally everyone, especially to me. I was livid, but mostly I was disappointed and just utterly disgusted that he would do this! Disgusted. I felt physically ill, like I was legit going to throw up. So I stopped the conversation and went upstairs to our bedroom. I have not spoken a single word to him since. We have not slept in the same room nor have we communicated in any way, scratch that, I did leave him a sticky note on a piece of mail that came, in which a claim had been denied by the insurance company, telling him to look into it and figure out a way to push it through. That has been the entirety of our communication since Friday. Its Sunday.

It sucks to feel this way. I was SO looking forward to this weekend and now its just been crap. I don’t want to be mad at him, but I cannot look at him without this feeling of disgust coming over me. He has let down THOUSANDS of people with his disgusting habit. But mostly me, mostly his kids. Looks like he doesn’t care tho. I thought we were over this, I thought we were on the same page, but clearly he’s too far past his surgery now and is feeling invincible again. Funny how sometimes, the further you get from an incident, the pain and conviction you had in that moment seems to fade. Not for me. It’s frustrating and impossibly exhausting watching him make choices that are bad for him. And I’m powerless to stop it. He needs to apologize for this, hell, he needs to apologize to the hoards of people who he’s let down, but he can start with me.

UPDATE: It’s Tuesday, and I had a lot of time (while we were both doing our best not to talk to or look at each other over the weekend) to reflect back on why this set me off so much. So last night, I asked if we could talk about it. My biggest problem with this whole situation (beyond the fact that I just really, really, REALLY want my husband to quit smoking) is that it seems to me that he doesnt care as much about himself as others care about him. His actions reflect this, and I think that is really the root of my frustration with this whole blow up of mine. It infuriates me. However, we did talk about it and came to an understanding, which is better than nothing, but still not how I wanted this argument to end. I didn’t get my apology, I didnt get any sort of agreement from him that he would quit smoking (again), but I did get an amazing hug, and I guess thats something. I’ll hold on to that.