Breakthrough!

Today, was a good day! Andy and I had the first meeting with our therapist. I am not above asking for help, and we needed some help. The past couple weeks, maybe months, I’ve felt like our relationship has gone from bad to worse. At a time when we should be coming together, focused on us, being happy, and making memories as a family with my husband… all I can focus on is how awful I feel, and how that makes him feel awful. We’ve been at an impasse for quite some time. Our arguments always end in the same way, regardless of what we were attempting to discuss. We can’t seem to find common ground or even middle ground, and this problem is way above my pay grade, so I reached out to our therapist that we saw years ago.

Andy and I have always had communication issues. His thought process is just so different than mine and I struggle to understand it. When we were dating, it was tumultuous, to say the least. On, off. On, off. Break up, back together. It was a lot of ups and downs. A lot of really high highs and awful low lows. When things finally seemed to even out a bit, I allowed him to move in with me, and things were good for a few years. But all that ended abruptly after we decided to take the plunge and build a house together. We ended up putting down a $6k deposit and signing a contract to build a new home and start our new life. Turns out, he wasn’t ready for that, he wasn’t ready to do any of that. So that night, after coming back from signing all the paperwork, I was on cloud 9, but Andy? He was silently retreating. A few days later, he made a choice. He left. Literally, left. And didn’t come back. He packed up all his things, took his TV and a single piece of furniture that he had brought with him when he moved in, and he left me. I was devastated. I packed up what I could and temporarily moved in with my parents. I slept 15 hours a day, I lost 15lbs because I just stopped eating, I wasn’t hungry, I didn’t care any more. My parents took care of me for those few weeks. It was awful. Painful. I have NEVER felt that way before. I have never felt that way since. I was, for all intents and purposes, lifeless. Completely and overwhelmingly heartbroken. But I picked myself up again, once I got over my pity-party, and tried to move forward.

Everything worked out, of course, there’s a loooooooong story here, lol But we were apart for 4 months, and once we got back together, I told him that was it. I wasn’t doing that any more, I was over the ups and downs and constant gray area that we always found ourselves in. And by God, I meant it. So I researched and found an amazing couples therapist in our area, and so began the healing process in our relationship. And healing we did! Blissfully healing and in complete sync with our communication. Our differences seemed to roll off our backs and all the things we agonized over for YEARS just seemed to become a non-issue. We were married about 6 months after we got back together and we lived this way, not in perfect harmony, not nearly, but on the same page at least, for many years.

But the differences between us have become exaggerated since this diagnosis began, and its at a tipping point now where every little thing sets me off, and I end up exploding all over the people I love the most. We hurt the ones we love the most, this is true. But I can also recognize when its time to call in the big guns.

It is time.

So last week, when my husband and I were in another dead-end argument, I told him that we needed to call the therapist. He agreed. We both felt like this impasse was nearly insurmountable for us to navigate without help. I reached out to our therapist the next day. Here’s the thing. Andy and I want to be with each other. We want to be together. We both feel compelled by a force greater than us that this was somehow meant to be. I love him more deeply than I have ever loved anyone, and he feels the same way. Above all, this has remained true. No matter how mad I am at him for smoking or being impossible, no matter what awful words I say to him to try to elicit a reaction, I love him. He truly is the love of my life, and I think that is why this whole cancer situation terrifies me. I can’t imagine losing him. Again. I know what it feels like to be alone without him, I know that pain, I endured it for 4 awful months. I don’t want that pain in my life. I want to be with him. I want him alive and in good health and with me for everything our life was supposed to be before this diagnosis.

Today we met with the therapist. It had been a while since we’d seen her and we had to catch her up on what had happened. It didn’t take long for us to get to the root of the problem, and me? Me. I was in tears in no time. Andy had heard it all before, this was not news to him. Everything I had to say to her was something that I had already said to him previously. And then she asked a very pointed question and Andy, somehow, went back to the beginning. He’s adopted, yes. But his adoptive father died when he was just 8 years old. It’s a terribly heartbreaking story, but my husband actually found him. He was the first person to see him hunched over, dead from a heart attack. This type of trauma leaves a lasting impression on a child, and I believe it is the single most important moment in my husbands childhood which has shaped, for better or for worse, the emotional skill set he has now. He admitted to the therapist that after his father died, he cried once at his funeral and then again 3 weeks later, but that was it. He considered himself the “man of the house” and with that, he believed he could no longer show emotion of any sort, that was a weakness. And this is how its been ever since. As he talked about his father to the therapist, I could see his eyes well up, I could hear his voice start to crack. I could sense that he’d never truly moved past this moment. Has he ever really mourned his father? I think to myself. I’m not sure. But he most certainly has sheltered himself from that hurt…and I get it. I understand why he doesn’t want to feel that pain. It hurts. Its awful. Why go there when you can ignore it and pretend it doesn’t exist?

Why?

Because sometimes, you get diagnosed with stage 4 cancer, and you have no choice but to go there and feel that pain. But if you’ve never learned how to deal with pain, and sit with that hurt, and overcome that awfulness, you won’t know how to handle it when it impacts you again.

So here he was, talking about his father. It was the first glimmer of emotion I have seen from him in months. It had nothing to do with cancer and everything to do with his father’s death. It was raw, it was real, it was freeing. I was privileged to be there to witness it. But it was gone as quickly as it came, and before a tear could emerge, he quickly moved away from that feeling. It floated past, as, I imagine, it always does for him, and he was back to being the “man of the house” who doesn’t let emotion get in the way.

But in my mind, it was a breakthrough.

In the same conversation, when the therapist was asking my husband about how he knew he couldn’t show emotion, and he could not articulate a reason why, she asked him why then, does he know he loves me? In that breath, with a shaky voice and more tears welling in his eyes, he explained to her that fate had brought him and I back together and that he loved me more than he could express. That we were meant to be together beyond a shadow of a doubt. He didn’t let those tears slip. No. He shoved them back down, but I had a lump in my throat the entire time as I listened to him articulate these words to the therapist, and I was at peace.

More was talked about and more was said, of course, during the course of the session. I cried, he did not, but we did engage in a conversation that met every expectation that I could have had. It was real, it was raw, he was vulnerable and open. Tonight, I feel very content. We have a lot of work to do, yes, but this is only the start! To know that we have already got this far and we’ve only just begun?? Its an incredible win in my book!

Hello? ANC? You Have a Problem

To say the last few weeks have been frustrating would be an understatement. Both because of ongoing differences of opinion between myself and my husband, and, more prominently, because Andy’s ANC count has been abysmally low and is a constant thorn in our side. Right now, as I sit here in the chemo center, Andy is in the process of infusing round 5. If you are keeping track, we should be on round 7 right now. Instead, here we sit. Round 5.

Its impossibly frustrating to be constantly told that you have to wait another week. We plan our lives, our schedules, our kids schedules, our work schedules, literally EVERYTHING around this ridiculous chemo — and to have to reschedule everything because his ANC counts are too low EVERY. SINGLE. TIME. This shit is getting old. He is not responding to the chemo well, its been much harder on him that anyone could have anticipated, his body is just not tolerating it.

And there is nothing we can do about it.

So, instead of getting the chemo every other week, we have gotten it every 3 weeks. He has never once, NOT ONCE, received his chemo on schedule. He’s getting the Neupogen shots, they even LOWERED the dosage of his chemo for round 4 thinking that the lower dose would give his body a fighting chance to recover properly, but nope. We came in last week (on the 2 week schedule he’s supposed to be on) and his ANC was still at 0.8. We just can’t get it any higher on that 2 week mark. We’re doing the shots, we lowered the dose — they REALLY don’t want to lower the dose any more because, I mean, at what point does it just become completely ineffective? At what point are we putting him through all this awful chemotherapy for it to have no effect on the cancer whatsoever?

Our oncologist insists that she has witnessed people’s bodies just somehow miraculously decide to start cooperating with the chemo and handle it better after a period of time, so she decided to keep the same (lowered) dosage for him for this round. But Andy and I are convinced that it won’t be enough and we’ll be in the same boat in 2 weeks when we come back. Ughhhh It is just so damn frustrating.

This is just so much harder than I ever imagined it would be. Even as I sit here, I’ve seen him receive this chemo 5 times now. It never gets easier for me. I still feel a wave of panic as they bring it out and hook him up. Knowing he has this special port in his chest for easier access. Why do I want to make this easy for them? I want to scream at them to get that shit away from my husband! Completely irrational, I know. But it still makes me uneasy knowing this poison is going into his heart, knowing how it’s going to make him feel and how his body is basically withering away from all this. He has no muscle tone left, like, none. He gets winded walking for too long or heaven forbid he have to go up more than 1 flight of stairs. He’s lost more weight, only 2lbs this week, but still. His 34 waist pants are literally falling off him. Time to sneak the 33’s I’ve stashed away, somehow knowing this is what would happen, into his wardrobe.

Beyond the actual chemo, this week has been good, but the few weeks prior to this, it really was constant fighting between us. His smoking has gotten SO much worse. He went from maybe 1-2 nights a week to more like 4-5 nights. I went through, one day, in a total rage, and literally threw away all his smoking shit. I hid all the lighters in the house, all the matches and anything that could be used to light a cigarette. I threw out all his vaping things all the battery chargers, all the liquid nastiness juice crap that goes inside them. I cleaned out his bin of smoking shit he kept “hidden” in the basement. I took all of it and literally threw it in the dumpster. I couldn’t take it any more. Everywhere I turn I hear people dying from vaping and smoking and it was all just too much. He already has cancer for Christ’s sake! So I tossed it all out. And it felt really, really good.

And he was SO mad at me. I mean, I have never seen him so mad. Now, his brand of “mad” is very different than mine. I could tell I hit a nerve because he started giving me the silent treatment. But in my mind, this was actually PROGRESS! I mean, I had been trying anything, everything to get him to react, and nothing I did garnered any type of reaction from him other than complete indifference or apathy. But this, THIS, I hit a nerve, and I hit it hard. This was probably the biggest fight we’ve ever had. The day after he realized I got rid of all his shit, he bagged up all the nice clothes I ever purchased for him and threw them into one of those parking lot donation boxes.

–Side note, my husband has a bit of a slob problem. He would probably still be wearing his size 38 waist pants at this point if I hadn’t hid them and gradually replaced them with smaller sizes. Srsly. He refuses to buy anything new from an actual store, he will only get his clothes from Goodwill or second hand stores. Which there is NO shame in, but he buys clothes that are 2, 3, 4 sizes too big for him! He has no style other than sloppy, and could really care less what others think about it. Which, again, is totally fine when we’re at home, sure. But I, on the other hand, while I am not a fashionista by any stretch of the imagination, I do like to buy nice clothes, but more importantly, clothes that FIT! So, I’ll go to Nordstroms or somewhere, to buy Andy clothes, then I’ll wash them and tell him I got them from a second hand store. That is the ONLY way he will wear the clothes I buy. It’s ridiculous, I know, but its SUCH a thing between us! I just want him to look nice in public, is that too much to ask? I think not.

Anyway, he knows his lack of understanding of the phrase “clothes that fit” bothers me, so he rounded up all the things he could remember me getting for him, put them in 2 big trash bags, took them to a parking lot donation box and tossed them in. I actually had no idea what he was throwing in there at first, but I figured it out pretty quickly. After that, for about 24 hours, it was a series of silent passive aggressive slights in my direction. I was LIVID. I was over it, I just wanted peace and I was sick of feeling angry ALL. THE. TIME. I hate what this cancer has done to me and how it has forced this huge wedge between my husband and I. I just want my old life back, like the one that was calm and peaceful and we were content with each other. I just want that life back!

Whatever, that’s not my life now.

So, that night, while he was ignoring me, chain smoking outside on our back patio, I decided that we were going to discuss this. I was doing the talking, he was happily watching football on his phone, trying to ignore me. But I wasn’t giving up. I sat down right next to him and I put my face about 2 inches away from his face and I was just sitting there, in his space. Sometimes I’d speak and say awful things, sometimes he’d speak and say awful things and then blow smoke in my face, and then sometimes I’d just sit there. We did this for at least an hour. It was hard, I was at the end of my rope, which is surprisingly short these days. We finally did end up talking, but there wasn’t really a resolution. It was just more of the same.

The next day, he was scheduled for chemo, so we went in, and, surprise, surprise, he didn’t qualify. That was a week ago today. That evening I thought that maybe we should start to be more positive, so I told him about an idea I had to only say nice things to each other for the whole week. If we had something that was not nice, we would just not say anything. So this week — its actually been pretty good! I sort of heard about doing this on a TV show, and it was kind of an idea in jest, but it actually did work! Things have been wonderful this past week!

Have we talked more about the incident? No.

But we also have not fought and have been totally on the same side all week! This past weekend was our 6th wedding anniversary, so I had made reservations at a restaurant about 4 months ago, and the whole evening was amazing! Since he missed his chemo last week, he was feeling really good, which I was so grateful for!

Now, hopefully, we’re back to a good pattern. We do not anticipate that he will qualify for his next scheduled chemo treatment in 2 weeks, so we’re planning everything around the 3 week schedule, just to try to stay ahead of this. But for today, his chemo is almost done and he’ll go home with his chemo-sabe box, then he’ll feel awful on Wed/Thrs/Fri and probably on Sat, but by Sunday, that will be a good day.

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.

The Fight

After the failed attempt at getting chemo last week, round 3 (take 2) this week was successfully administered. As a very good friend and neighbor pointed out to me today, we are 1/4 of the way done! Wow! Great perspective, I told her, and it was very welcomed today as I’m struggling a bit through some extra sensitive emotions.

My grandmother on my mom’s side died a few days ago. She was very old and died not because of some terrible disease that she had struggled with for years, not because of infection or a fall or some awful tragedy. She died because it was her time. She was surrounded by all her children in a quiet peaceful room. She hung on for way longer than the doctors thought she would, as my mom put it, She’s a tough old bird! And she was. She was loved and will be missed incredibly, she lived a good long time. But all this got me thinking, Shouldn’t we all be so lucky? To die without pain, at an old age, after a good run at life, surrounded by those we love. Everyone deserves that.

This week has been a rough one. My sons 5th birthday party was such a success, but I don’t know if I can adequately describe the fight my husband and I got into the night before the party. I admit it, my emotions run high during holidays and birthdays. Add this on top of the cancer treatment and the passiveness I’ve taken on over the past 3-4 weeks in an attempt to keep everything very calm and not create any undue stress for my husband. I hit an inflection point and I knew I was going to blow my lid. Not just that, but the fact that I still can’t get my husband to talk to me about any of this! I am still convinced he is in deep denial, and as I’m trying to work through this, he remains unphased and completely disregards any real or raw emotions I try to bring to him. Do you know how unbearably maddening it is to have the one person who understands exactly what you’re going through just up and refuse to talk about it? He makes me feel like I’m a complete lunatic! While he remains calm, joyful even, as he is making appointments for chemotherapy (poison) and scheduling all this shit that NOONE should be happy about. He just happily whistles a little tune and carries on like everything is fucking fine. Meanwhile, I am trying my best to maintain normalcy and pretend (for him) like things are fine. Well things are not fucking fine. And I just couldn’t take it any more. So that night, the night before the party, I let it all out. All the dirty laundry that had been piling up for weeks, I was airing it ALL out. The vitamins that he was refusing to take, but was blissfully still smoking cigarettes. (While on chemotherapy. For cancer.) The fact that he adamantly denies he’s in denial about all this. (Isn’t that, like, the most classic symptom of denial?) The fact that he WON’T talk to me or listen to me about any of my emotions. He is SO disconnected that when I attempt to have an open and honest conversation with him, he tells me I’m making it all about me, and gets up, and literally walks out of the room. It makes me feel completely disregarded and insignificant and like an absolute basket case because I NEED to talk about this! Then I’m left second guessing myself, like, Am I making this all about me? I mean, yes, I am an asshole some of the time, but I feel like I’ve truly turned a corner in that regard. And, while I admit, I am the one that needs to talk about this, and he might need something different. Even so, this is definitely not all about me. But it is also not only about him.

It was late at night when this all erupted. In that moment, I was literally fuming. We had actually had a pretty calm conversation earlier in the day as I could feel I was almost at my boiling point. We sat down across from eachother, he talked, I cried, he attempted to listen, and when it was all said and done, we had a list of to-do’s. I had had a conversation with a friend a few weekends back and she mentioned something to me about asking him how I could help him. This all came about because I beyond frustrated that everything I was doing in an attempt to be helpful and useful was being met with resistance or was being thrown by the wayside in some form. So my friend asked me if I had asked him how I could help. I had not, but I thought it was a good enough idea and decided I had nothing to lose. So I asked, and out of that came this “to-do” list, so to speak. It consisted of him agreeing to try to be more aware of when I was struggling and taking initiative to offer me reassurance during those times (for example, him seeing me struggle, coming over to me and saying something like, I see that you’re struggling, how can I help?) and me, agreeing to ask more direct questions on topics or feelings I’d like to discuss (for example, me asking things like, If you were to tell someone who was just diagnosed with cancer how chemotherapy felt, what would you say?) So now, although I have no background as an investigative journalist, I somehow have to become an expert at formulating the right questions and asking them at an appropriate time just to get my husband to tell me about how he is feeling. Ughhh Whatever. I was not happy with this setup. Just more of the mental load for me to shoulder. Why was it solely up to me to draw this out of my husband? Why couldn’t he just offer this up to me like some little glimmer of a normal reaction to a stage 4 cancer diagnosis? Nope, I don’t get that. That is not my life.

Yea, I was not happy with this setup. So, as we were running around getting the birthday cake and picking up last minute decorations for my sons 5th birthday party, it stirred in me. All I could think about was that he just gets to live his life like normal, and if I wanted any sort of connection with him about this, it was up to me to make that happen. I was furious! How could he do that to me! I have literally given up EVERYTHING to make him comfortable! All my energy, all my time, all my brain power, all my focus, every effort I put in to researching doctors and hospitals and vitamins and procedures and creating a log of medications and his reactions to each. The backseat that I’ve taken at my job, with my own children, with my friends. Literally EVERYTHING has been put on the back burner and all I ask is for a bit of real vulnerability from the one person who I love most in this world, the one who knows exactly what I’m going through! I couldn’t take it any more, I was completely done. It was ALL weighing on me.

And I let it out.

Have you ever heard the saying that no good conversation happens after 10pm? Its true. It was probably midnight, I was outside screaming at him in our backyard, likely with neighbors listening. I didn’t care. He was chain smoking cigarettes, and that was just the icing on this shit cake. I told him everything. All the things he didn’t want to hear. All the awful statistics that he refused to read or know about. I told him that the reason I was SO upset was because I didn’t want him to die. And I didn’t! I DON’T! That is the absolute truth! I told him that I didn’t want him to fall into the 62% statistic for those who are dead 5 years after this diagnosis. I told him that all these things I was doing, all the research, all the vitamins, was because I wanted him to LIVE! And he was taking all that and just throwing it out the door, and SMOKING on top of it. Which, if you don’t know, is AWFUL for anyone with cancer, not to mention those that are actively on chemotherapy. Srsly. I told him that he deserved to feel like crap after his chemotherapy treatment and I hoped he did. And I meant it.

And I felt awful.

Guess I am still an asshole after all. It was another one of those moments that I am not proud of. It was a hard night. Its been a hard week. This whole thing has been hard. We both said things that we regret, well, at least I know I said things I regret, we haven’t actually talked about that night. I have a feeling we’d both just rather forget it happened and move on. Sometimes sorry just isn’t enough.

So we got the chemo box off today, and right on schedule, my husband feels like crap. The diarrhea is back with a vengeance and his energy has completely tanked. At least when he’s so exhausted, he’s not on the toilet! There’s a bright spot, lol He’s had a bit more nauseousness this round, no actual puking yet, but he just feels queezy. That’s not fun. This is only round 3. I cannot believe we’re ONLY on round 3!! Why do I feel like time is just creeping along? I feel like we may NEVER get to the end at this pace! We might kill eachother before then.

Just kidding of course!

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.

Chemo, Round 2. Take 2.

Last week was supposed to be Andy’s second round of chemo, but when we went in, his white blood cell count was too low. Fun fact: you have 5 different white blood cells that make up your white blood cell count, the one that is most important is the Neutrophil count. The Absolute Neutrophil count, or, ANC, to be exact. This is the one that makes up about 60% of your entire white blood cell count. So when that one falls off a cliff, the rest of them don’t really matter. A normal count is between 6.4-10.6. Prior to chemo, Andy’s was already on the low end of normal at 7.4, but when we went in for his chemo last week, it was at a dismal 0.4. The minimum threshold needed to administer chemotherapy is 1.0, so we were sent home and told to reschedule the chemo session for the following week. This was disappointing to say the least, but we tried to put a positive spin on it, rationalizing that it was a welcomed extra week “off” from the chemo. This was a lie, of course, but we were both happy to ignore the fact that this was likely a problem we were going to have to face over and over again. Dr. Galsgow totally called it when Andy was in the hospital with his bowel obstruction. He mentioned that his ANC was really really low. At the time, I was just taking note of it, but now, its a thing. Its a whole thing.

Lovely.

So home we went, happy to have a week off, frustrated that all we could do was wait. MORE waiting! Ughhh I hate waiting.

So we waited, and it was actually kind of nice! Things were pretty good that week, Andy felt great! We went out to dinner, Andy took our 4 year old to the movies and to the magic house, we got ice cream. It was just really nice! Everyone kept asking me if my husband was too weak to do things or if he was in some way bedridden because his white blood cell count was so low. No. That’s not how it works. But I can’t blame them, I would have thought the same thing if I were in their shoes and not mine. These little details are not really something anyone knows about, nor should they be. People think that just because he has cancer that he should be “sick” all the time. But, he’s not. He’s just, normal. He is taking it easy, yes, but that is moreso because of his ongoing tummy troubles which have little to do with the chemo whatsoever. –Okay, the chemo is exacerbating the tummy troubles, but the origin of the issue is not the chemo, it’s the right hemicolectomy. So we just carry a lifetime supply of Imodium AD and Lomotil on us at all times, lol It’s really not that big of a deal. It sucks, sure, but this is our new normal.

So we went in on Monday this week for round 2, take 2. Luckily, his white blood cell count had come up to 1.2 which is just above the threshold to allow them to administer the chemo, so he was able to receive treatment, but just barely. This makes me nervous. We really only have one choice if his ridiculous ANC doesn’t start to figure this shit out. Neupogen shots, a series of 3, given over 3 days. These shots stimulate the bone marrow to rapidly make white blood cells — you know what that feels like? The flu. Yep, side effects from the Neupogen shots are bone pain and flu like symptoms. Chills, aches, bone pain, cold sweats, low appetite, drowsiness, lethargy. You know, the fucking FLU. They give these to him on his off week. So here’s how this 2 week cycle would go:

Monday–> Chemo starts, chemo pump hooked up, steroid (feel good) shot
Tuesday–> Chemo pump in full force but otherwise a good day
Wednesday–> Chemo pump disconnected, IV fluids administered, starts to feel awful
Thursday –> In bed all day, feeling awful
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day
Monday–> First Neupogen shot, feels like he has the flu
Tuesday–> Second Neupogen shot, feels like he has the flu
Wednesday–> Third Neupogen shot, feels like he has the flu
Thursday–> Recovering from Neupogen shots, feels like he still has the flu
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day

rinse. repeat. for 20 weeks.

How’s that sound to you? How would you feel if you knew that in the next 6 months, you would only feel good, like a normal human should, for about 40 days? 40 days out of 6 month time frame. 30% of the time you’d feel okay, not even good, just okay, the other 70% would be awful. How would you feel if you knew that? It makes me nauseous that my husband will have to endure that just for the opportunity to be able to receive POISON. Maybe I’m being overly pessimistic here, maybe I’m just trying to deal with the crazy amount of loneliness that all this has thrust upon me! Because while my husband is going through all that, sleeping for days at a time — what am I doing? Life. That’s what. Back to school shopping, lunches for the kids, dealing with tantrums from the teenagers and the pre-schooler, chauffeuring the kids around, working full time, picking up, dropping off, cooking, drinking, spending most evenings watching TV. Alone. Doing all of this alone. Now, don’t get me wrong, I do love some alone time, but this cancer business? Its lonely work. And its not just that, its the fact that even my closest friends cant fill the void. And, to make it worse, there is nothing I can do to make it better. I can’t lay with my husband and cuddle (would you want to be cuddled with when you have the flu?) I can’t give him a pill to help him feel better, I can’t cook him something, I can’t say anything, I can’t do anything, I just have to sit back and watch him suffer. And with this round, he is suffering. His tummy troubles have been extreme this time. Nausea is starting to become an issue as well. The nephropathy has definitely reared its ugly head. For example, Tuesday morning, he went to take the trash bag out of the can in the kitchen, a silly, mundane everyday task, something he’s done every week for years because Tuesday is trash pick-up day, and I could see him struggling to get the bag out. He was trying to grip the bag and kept clinching his fingers up, pulling back, because it was painful to touch anything with his fingertips. So he was using the insides of his fingers and his knuckles to grip the bag, wrap the tie around it and pull it out of the can. I wanted to offer to help, but I also didn’t want to make a big deal out of it, knowing all this had to be weighing on him too. So I didn’t let him know that I saw the struggle. He managed, of course, but it was painful just watching him attempt this simple task. So there’s that, along with the cold sensitivity and bone pain, which he already has. Every time he bites into food, he gets this intense pain in his jaw and he has to chew very slowly. It lessens after the initial bite, but it’s still a struggle. The exhaustion, sure, but that actually has not been that bad this time, but the diarrhea, ughhh, the diarrhea! Obstructive, invasive, sudden, explosive, life altering, embarrassing, dehumanizing, stomach churning, uncontrollable diarrhea. It has worsened, and his stomach is constantly in some state of upset-ness. That’s the worst part. I would be okay with all of this if he wasn’t in pain, but he is, and that makes me feel absolutely awful. And helpless.

On the up side, he did go into work this morning. He is convinced that since he felt good on Friday for his first chemo round, he will always feel good on Fridays. Well, not necessarily, lol But I’m not going to be the one to tell him that! He lasted about a half day, and is at home now in bed. My husbands outlook on all of this amazes me! Its such a change of place for us, me, holding it down here in reality, while my husband is blissfully optimistic about everything! All our lives its been the opposite. Being a realist sucks, I hope it passes with this cancer situation.

So now I’m looking towards his next round of chemo. I am finding it so hard to be optimistic about his ANC numbers. The reality of the situation is he went from 7.4 to 0.4 in round 1. This round, he didn’t start at 7.4, he started at 1.2, so who knows how low his numbers will be when we go back?? This terrifies me! I do not want him to have to go through the Neupogen shots! Our oncologist did say that sometimes the body does find a way to regulate itself, so all hope is not lost. But I feel like with our luck? That is just not what will happen here. But who knows?

Chemo-Sabe

Monday was Andy’s first chemotherapy treatment. He was exactly 9 weeks post-op from his HIPEC procedure. For some reason 9 weeks ago LITERALLY feels like a lifetime right now! I, of course, was tossing and turning all night Sunday night, living in anxiety hell. My husband, on the other hand, cool as a cucumber, sawing logs all night long. Regardless of sleep or not, we were up bright and early to take our 4 year old to preschool before heading to our appt at 8am.

We get there and I can feel myself getting really nervous. My legs are twitching (more than they normally do, lol) my palms are sweaty, everything about me is uncomfortable. But at the same time, I’m also really eager to get this show on the road. The Friday before was Andys port installation. If you didn’t know, the chemotherapy (poison) is too strong to go through a normal vein in your arm, so they place what they call a “port” in your chest, and its basically direct access to your heart. Literally. They use an arterial vein, the superior vena cava, which feeds directly into the right atrium. So they place a tube in the vein and then put, what looks like, a cap under the skin. You can sort of see it sticking out in the pic, but its under the skin on the right side of his chest.

The port placement took me for a bit of a ride as everyone I spoke with kept telling me it was no big deal and he’d be in-and-out in a jiffy. Lo and behold, its this hour and a half long procedure in which he is put under with anesthesia. Its just more tubes and more surgery and more of this nightmare that I can’t seem to get ahead of. It just creeps up on me everywhere I go! That day I was completely overwhelmed! We went in for what we thought would be a small procedure. We honestly thought we’d be in and out in an hour. What we got was this long, drawn out, 4 hour ordeal that I was just NOT prepared for. I blame myself for my under-preparedness. Its just literally EVERYONE I spoke with told me that it was no big deal, so I went into it thinking it was no big deal. Well, it was a big deal. I should have done some research. Lesson learned. It’s just I HATE continually seeing my husband in this position. Hooked up to tubes, knocked out from drugs, vulnerable, barely lucid. It’s too much for me to bear. That was a hard day for me.

As a side note, including this port placement procedure, my husband has been in surgery, under some form of sedation, for a grand total of 14.5 hours in the past 3 months. What the actual fuck. This cancer shit sucks.

Anywho, back to the poison that is going directly into my husband’s heart. Not passing GO, not collecting $200, just straight to the heart. At this point, I just sort of wanted to get this over with. Tho, admittedly, I was a bit intrigued to see how they were going to use this port situation. So when they came over to get things started, I perked up a bit. How it works: They use a small needle which gets pushed through the skin into the middle of the port, and that is what delivers the chemo.

So we get there at 8am and wait a bit, we pay our copay ($100 every time we go. $50 bucks to this specialist, $100 to that one…oh, another $100 to this doctor — the copays never end, ughhhhh) and get registered. They bring us back to another waiting room, where we sit for another 20 or so mins. Finally, we get into the chemo room and we take a look around. My husband and I both look at eachother and just burst into laughter! We both knew exactly what the other was thinking! Andy is the youngest one in there by AT LEAST 3 decades. I mean, come on. Add insult to injury, all these folks have lived a long healthy life and got the short end of the stick towards the end of the line — but us?? Nope. We get the short end of the stick now. We just have to laugh at our situation sometimes because really, WTF? It was likely not the best reaction we could have had when first entering the chemo room, but, what can you do?

Once they had Andy’s port hooked up and working, they did all this “pre” stuff. His iron was low so he needed an iron infusion (something I also blame myself for as I kept meaning to order the iron supplement along with all the others I’m having him take, and just completely forgot, face-palm.) Then they gave him a steroid which would help with the absorption of the 5FU and would also give him a needed energy boost for about 48 hours to get through the bulk of the chemo, they gave him some antibiotics and benadryl which would help if there was any type of reaction to the poison cocktail they were about to give him, a massive amount of anti-nausea medication, a dose of Tylenol and also some amino acids. Half way through all this “pre” stuff they switched him from saline solution to a sugar water solution because the chemo doesn’t play well with salt apparently, so they needed to have a decent amount of the sugar water in his system before starting the actual chemo.

While we were sitting there, we decide to check to see if Andy’s blood work they did last Friday was back. And it was:

CEA: 1.4 (a 1.8 drop, normal is 3 or below)
CA125: 9.9 (a HUGE 47.9 drop!! normal is 30 or below)

We were elated to see that everything had dropped! Even tho his CEA wasn’t high to begin with, it was still such a relief to see it lower. And, my God! The CA125 dropped more than 40 points!! He is now FIRMLY in normal territory! All this was a welcomed bright spot in this day.

Fast forward to around 11:30am — its finally time for the chemo to begin. In the same way it was weird watching him go willingly into surgery, it was weird watching him receive this chemo. In your head, you imagine people kicking and screaming and being taken against their will, FORCED into this position. It’s like I thought the chemo was going to come out of the pharmacy glowing this neon radioactive color, like on the Simpson’s or something, or have some sort of indication that THIS was the BAAAAAAAD stuff, the stuff adults have nightmares about. Getting cancer. Having to go through chemotherapy.

But no.

It was clear, just like the solution they were already infusing. They just hooked it up and let it drip. Again, a bit anticlimactic, but I didn’t know what to expect. I do remember watching the tubing as they hooked it up and thinking it could only take maybe a minute before it actually got from the bag into my husbands heart. So I sat there, a bit on pins and needles, watching the tubing, imagining the chemo solution working its way down the tube, through the loops, slowly, and then up through my husbands lap and finally into his port, just waiting for something bad to happen. But it didnt. Andy just continued working on his computer as he was doing prior to the switch over. Doubtful he even noticed they started the actual chemo solution, lol I was acutely aware.

So that was it. I sat there for about 45 mins (just to be sure nothing bad was going to happen!) then I left to get some food and go home to exercise. By the time I got back, he was done! I had no idea the actual chemo infusion would only take 2 hours! So when I arrived, they were hooking up his chemo box, which he gets to take home with him for a continuous infusion over the next 48 hours. So, for 2 days, his port is connected by tubing to this box which, he lovingly calls, his chemo-sabe box, and he has to carry it around with him like a purse. Of course he LOVES that, lol The chemo will slowly infuse the entire time. If you’re not counting, that is a total of 52 straight hours of chemotherapy. 12 times. This is why they call cancer patients warriors.

So, on our way home, he did mention to me that he had some metallic taste in his mouth and that water, usually his liquid of choice, just tasted “weird.” The first night was okay. He had a bit of jaw pain at dinner and he was pretty restless throughout the over night hours (from the steroids, which they did warn us about) and he had a pretty bad bout of acid reflux around 3am along with some pain at the port site. If I hadn’t been asleep, I would have told him that all that was normal, and to take some antacids and prop himself up with pillows so he can sleep more upright, a little trick I learned from being pregnant and having massive indigestion. But, since I was asleep, he ended up calling the exchange number — and they told him that all that was normal and to take some antacids and sleep in a more upright position. lol

That morning, he had his first twinge of cold sensitivity. Not anything completely awful, but, in the mornings, when he pours his coffee into his to-go cup as he walks out the door for work, he grabs 1-2 ice cubes and plops them in the coffee to cool it down. That morning, he reached into the freezer to grab some ice and thats when he noticed the sensitivity. Sensitivity is really the wrong word here, he said it felt more like shards of glass poking him as he grabbed for the ice cube. Well, okay then. Gloves for him from now on! He went into work and had a normal day! I checked in on him a few times:

Me: How you feeling, my love? 😘🤗🧡

Him: Great.

Great. Okay, I’ll take that as a positive! When he got home, his face and neck were flushed. I asked if he had been in the sun at all and he said no. So we took his temp and it was completely normal, just interesting to see him walking around all rosy cheeked ☺️

Last night was pretty much normal. We went to bed, there was no calls to the exchange, no bouts of reflux. Andy slept well, I slept well (the reprieve I had been waiting for!) and today we get the chemo-sabe box off! He’ll get some IV fluids when they remove the box and that should help him feel a bit better for another couple hours or so. But, they told us to be prepared for his energy to tank tonight or tomorrow. All these “feel-goods” they’ve been giving him will wear off and he’ll be out in the wild on his own at that point with only pill form medication to help. So we’ll see how it goes. I think we’ll both feel much better after we have this first round under our belt and behind us. Onward!

Expert Opinions

We got back from our whirlwind trip to see the appendix cancer specialists last night. From St. Louis –> New York –> Houston –> St. Louis in 7 days. We were pretty exhausted yesterday, so I went to bed at 10pm, Andy stayed up and smoked a half pack of cigarettes. Gross. (Don’t EVEN get me started, ughhhh)

I digress. I am happy to report that the trip was a complete success! We did indeed get to spend some “vacation” time together, it wasnt all doctors visits and cancer talk. New York was what I was looking most forward to, but Houston was the part Andy was most excited about. My husband has family in Houston and we dont get to see them very often, so when they offered to have us stay with them while we were there, we happily accepted.

We got to New York on a Wednesday evening. Our flight was delayed a bit so we got in a bit later than we wanted, but we still had enough time to grab a .99¢ slice of pizza (something my husband really wanted to do, lol) and head to Times Square. This was Andy’s first time in NY and I really wanted to show him the sights! As you can imagine, me being Type A AF, I am a planner. If this trip had been last year, I would have had almost every second of it planned! I would have a back-up plan for any plan that didn’t pan out and I would constantly keeping track of time to make sure we were on point. But this was different. Mind you, I still needed to plan something, but I didn’t want to be over planned because I wasn’t sure how the travel and all the walking would affect my husband’s energy level. But you must know; I have a problem with last minute change and failed expectations. Something that happens to me when I plan things, is that I get disappointed when the thing I plan doesnt work out, or something happens and we miss it, or something goes wrong. I try to be flexible, honestly, I do try! I give myself pep talks and tell myself that everything will be fine if something falls through … but it just effects me negatively no matter what I do. I didn’t want this to be the case in NY, so I tried to limit my planning, but the only 2 things I planned ended up falling on the same day — and that ended up being too much. I had a fun architecture tour planned in this awesome 1920’s style yacht on the Hudson River that was scheduled at 2pm. Then, I wanted to do a nice dinner. One nice, fancy, expensive dinner in New York City, and the only reservation they had avail was at 5:30pm the same day as the architecture tour. So I booked it. I REALLY wanted to do it and since the tour was only 1.5 hours, I was sure we’d have plenty of time! I was wrong. On the way back from the architecture tour, I wanted to make a quick pit stop at the 9/11 Memorial. It was one of the most impactful things I had ever seen and I wanted to share that with Andy. But my husband wanted to head back to the hotel to rest a bit before dinner, and I pushed him too far by forcing him into sightseeing. We got back to the hotel with only 5 mins to get ready for our fancy, expensive dinner. I was fine, luckily, I was pretty much ready except for my quick change of clothes, but Andy was exhausted even before we got back to the hotel. He was almost falling asleep at dinner, and me? I wanted to go out for a night on the town! I was dressed up all cute and had curls in my hair and I was in New York! I wanted to have a fun night!

Nope, not in the cards.

When I suggested to my husband that we head to the bar area of the restaurant after dinner for a few more drinks, he declined. It was 7pm. I was a bit perturbed even though I knew he was exhausted, even though I knew he was tired, even though I knew he was at the end of his rope. I still wanted to have fun. For me, this night was not over! I didn’t want it to be over. But we went back to the hotel anyway, he laid in bed, I changed out of my fancy dress and decided I was going to go back out. We had passed an outdoor bar gazebo thing on our way back to the hotel so I decided I was going to go there (by myself) and just sit and have a glass (or 3) of wine. So I did. I sat there fuming because of the situation. I was pissed off at cancer. I was pissed off that this had happened to my husband and wiped the person who he used to be out of existence. I wasnt asking for much, just a night out with the man I love, and cancer took that away from me. Fuck cancer.

The next day we met with the oncologist at Memorial Sloan Kettering. This was the moment I had been waiting for! What would she say? What would she suggest? What more in-depth and useful information could she offer to us? After all, she WAS the expert in this specialty area! The appendix cancer specialist whom I researched and sought out especially for her guidance. So, what did she say? “12 rounds, FOLFOX chemotherapy, with follow up CT scans every 3-6 months” … and I was a bit dumbfounded. She literally, almost word for word, echoed what our team in St. Louis had already recommended. No additional insight, no useful tidbits that could help us unearth new information, no new medically advanced scanning equipment which could offer us a more proactive view into tumor growth, no new treatments, no new advice, no new conversation starters, just the same thing we had already heard. The. Same. Thing.

It was a bit anticlimactic.

So when we got to MD Anderson in Houston and spoke with the expert there and heard the exact same thing, I mean, I guess the confirmation is a good thing? But I don’t know. I suppose it’s better than the alternative, right? I mean, what if we had heard 3 opposite opinions and were offered 3 different courses for treatment — and then it would’ve been up to US to choose the one we wanted! Yikes! I mean, that would have been a nightmare! So this is good.

So here we sit now. The team at MD Anderson did not offer us a consultative option, which means that if we wanted them to provide anything other than a second opinion, we’d have to go through them and only them. The oncologist at Sloan Kettering was much more willing to work with our St. Louis team to check over Andy’s scans and suggest additional treatment options if this cancer returned. She will provide her expertise and consult with our boots on the ground team here, so that is who we’ll be using moving forward. Now its just all about getting Andy scheduled for all the pre-chemo stuff that needs to be done. He needs updated blood work to check his CEA and tumor markers (CA19-9 and CA125) and he needs a new CT scan to provide a baseline for future scans to check against for regrowth of the tumors. He needs to get the chemo port installed which is an outpatient surgical procedure. Then we need to schedule his first chemotherapy cycle. Oh man. Typing that just gave me chills. I don’t want him to have to go through this, but all the experts said that there is a very good chance that this is in his bloodstream and the systemic chemo should wipe it out. But he will never be “cured” of this. The best we can hope for is NED (No Evidence of Disease.) Sometimes people go decades being NED where it comes back after 15 or 20 years. Point is, this is never something we’ll be rid of. It will always be in his body, it will always be something I’ll worry about.

But for now, at least we have a very, Very, VERY clear path forward and I am hopeful that all my worrying will be for nothing because Andy will push through chemo, like he did with the surgery, with very little side effects and a quick recovery period! No, he’s not 100% yet, hell, he’s only 7 weeks post-op at this point! But he’s definitely 80-85% and while I may want him to be back at 100%, I know that is ridiculous. We’ll get through the next 6 months of chemo and we’ll hopefully be done with this! I hope this blog comes to a quick close 🙂

In A Holding Pattern

This week brought some new information. And more waiting. Ughhh, lol We met with the oncologist last week and I requested she test for tumor markers CA125 and CA19-9, which I’ve learned, through my research, are used frequently alongside the CEA number and PCI. Tho not really as predictive in terms of overall survival as the CEA (which seems to be the top dog in prediction stats) it will still give us something to measure. And since I’ve learned that this measurement concept is not really something people are familiar with or take seriously in the cancer world (WTF is right!) I’m going my own way with this one and collecting all data points I can get my hands on.

We got the results back (and a recap of current state):

CEA: 3.2 (within normal range, tho 3.0 and below is considered completely normal) Looking for 6 or below
CA19-9: 14 (within normal range) Looking for 37 or below
CA125: 57.8 (high) Looking for 30 or below
PCI number: 8 (moderate) Looking for 6 or below
CC score: 0, which is best case scenario

So again, I have to remind myself that the tumor markers are not really predictive in any way, they are just numbers to track. But the fact that one is almost double what it should be, that makes me nervous. Actually, now looking at the overall picture here, its not awful, but it gives me pause. What keeps me up at night is that if I were to take these tests, (and actually, I WANT to! I want to know what my numbers are and then have our goal be to get Andy’s as close as possible to mine) they would likely be sitting at 0. My CEA would be 0, my CA19-9 would be 0, my CA125 would be 0 (I wouldn’t have a PCI or CC score as I do not have a disease to track the coverage of or figure the completeness of removal for.) But it tells me that something is off with my husband, and that just makes me feel uneasy.

In other news, my husband went back to work this week! Yep. Day 15 post-op, he went back to work full time. He’s insane! Ha I’m not sure how he’s keeping a clear head while working, I still feel extremely unfocused and I really have to try SO HARD to get into “work mode.” Tho his work is more get-things-done-right-now type of stuff where he’s constantly putting out fires all day. Whereas mine is more strategic thinking and programmatic overhauls where I have to come up with new program lifecycles and consider governance and implementation. So I really need some focused brain power to get into all that thinking, I’m hoping this long weekend (Memorial Day) will help me clear my mind and allow me to get back into things on Tues when the work week starts again. I really need to start focusing back on my work, I have so much I need to make up for! If only my will to WANT to do good work could tell my mind and my heart to FOCUS on the work that needs to be done!

Andy was accepted into the MD Anderson program in Houston, which is AMAZING news! We also cleared these second opinions with the insurance company who said that they would pay for as many second opinions as we wanted. Also good news. I am awaiting Andy’s acceptance into the Memorial Sloan Kettering program in NY, actually, I just called our case worker who confirmed that they had received some of the paperwork and were reviewing it, but they had not received all the paperwork as of yet, so there has not been a determination. Ughhh More waiting. I am hoping to get these appointments made the same week so we can kill two birds with one stone, so to speak. Currently, our appt in Houston is the last Monday in June. That is a bit later than I wanted, but it was the first avail appt with the team we needed to see, so it is what it is. I am also, kind of, (secretly) hoping to use this as a bit of a little vacation for me and Andy. I know that we will be doing testing and that is terrible, but he will begin chemo, likely, the week after that, so he is going to feel like crap for 6 months. This might be a good way to celebrate us and how far we’ve come through this and just take a moment to have some fun before this new reality sets in again. We’ll see.

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.