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 My sanity is WAY more important to me than any outdated and misdirected notion that you must enjoy your children every second of every day.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?

Today’s Plan … Poop!

What a difference a week makes. Just as we thought we were through the thick of it. Just when we thought we were at the beginning of some semblance of a rhythm that we could ride out, at least knowing sort of what to expect for the next 6 months, head down, just getting through it. But nope, that wouldn’t be our world, would it??

After the chemo box came off, Andy was okay. The side effects were okay. He wasn’t in any pain, thankfully, he had some weird sensations on his tongue for a bit, a metallic taste in his mouth, a headache, a little nauseousness, but more than anything else, he was exhausted. Not just tired, but a level of exhaustion I have never witnessed in my life. No energy, no will to move, or even watch TV. He was so completely exhausted in those first 2 days after the chemo box came off that when he would muster up enough energy to speak, he couldn’t even open his eyes. It was hard seeing him like that, but I was grateful that he was not in any pain.

So when he woke up on Saturday feeling half decent, I was SO happy to see his energy up and the smile return to his face! It was glorious. It was short lived.

In fact, he was feeling so good on Saturday, that he suggested we take our 4 year old to the pool. I was a little confused by this sudden energy spurt, but I wasn’t going to tell him no, so I happily agreed! We got all our gear on, got sunscreened up and headed towards the pool. About 30 mins into our pool adventure, Andy started getting some pain in his stomach. He decided that maybe he overdid it and sat on the side of the pool to watch me and crazy-man throw the water logged ball back and forth. About 30 mins after that, he waved me over to him and started to tell me that he was going to Uber home from the pool, he said that he didn’t feel well and he needed to leave. Now. So I immediately said, Oh! NO! You’re not Ubering home, babe, we’ll just all leave. I didn’t want him to be home by himself and I certainly didn’t want him to puke in an Uber if it was nauseousness causing his tummy trouble.

Not wanting to be the cause of us leaving, (more-so trying to avoid the fit our 4 year old was going to throw because of us leaving) he said that he’d try to use the toilet and see if that helped, he told us to continue playing while he was sorting it out. Okay! I say, not really thinking too much of it, but agreeing that he’s probably overdone it. He came back about 10 mins later saying he felt a little better. So we continue to play and Andy plops himself on the side of the pool with a birds eye view of us throwing the ball.

I keep my husband in my peripheral, glancing over every few mins, and I can tell by the grimace on his face and his hunched over body language that he is definitely not okay. So about 2 hours into our trip to the pool, I decide its time to pack it up and head home. The protest from the 4 year old was not nearly as bad as we both thought it would be — we did bribe him with a popsicle, but that’s beside the point.

All evening Saturday, my husband was in bed. I was working on a small home improvement project so I would go up and check on him periodically and ask how he was feeling. All he could say was that his stomach was in pain, he said it felt like gas pain, but he could not pass gas and he was also starting to get really burpy. I didnt know what to do, so I offered some gas-x and some laxatives to see if that helped. None of them helped. Overnight, he was in-and-out of bed almost 20 times and I could feel him moving around frequently trying to find a position that was comfortable enough to sleep in. He vomited once, which he said brought a lot of relief, but by Sunday morning it was too much. When I woke up, something clicked and I said, Babe, I think you might have a bowel obstruction. I have been following some appendix cancer facebook groups and although I didn’t pay a ton of attention to the talk about the bowel obstructions (since, silly me, I thought those really only applied to the older folks in the groups) but the topic was prolific enough that it piqued my interested and I knew it was something that people with this cancer frequently had to deal with. So when I woke up on Sunday morning and asked my husband about his symptoms (which we debated about — trying to decide if they were from the chemo he just had, or something new) something clicked, and I immediately thought: bowel obstruction. By this time he was laying on the floor in the child’s pose position trying to get anything to move down there. He was in pain.

So into the car we went. We call the emergency exchange and headed towards the ER. While we’re en route, we get a call back from the exchange and they tell us that this is no big deal, that we should go home and Andy should drink some water and walk around. They said that this should clear on its own and advised us not to go to the hospital or take any laxatives. Ummmm, okay? Meanwhile, I posted my husbands symptoms on my appendix cancer facebook group and literally EVERYONE was telling us to get to the hospital! So I was stuck. We decided to turn around and head back to the house to see if things got worse.

90 mins later, it was worse. My husband was doubled over in pain. I tell him We’re going to the hospital, I don’t care what the on-call nurse had to say! And I’m glad we did.

Turns out, I was right, it was a bowel obstruction. My immediate first thought was Oh my God! The cancer is back and the tumors are pushing on his bowel and causing this! But I calmed down enough to be rational. We get checked in at the ER, pay our copay (ughhh $250, rolls eyes) we get to the room and then we sit. And wait. And wait. They do a CT scan on him and confirm the blockage. And then we sit. And wait. Then they come in and tell us the next step would be to place an NG tube down his nose, and feed it through to his stomach, where they would pump out all the contents to alleviate the pressure on the blockage and hopefully allow it to pass naturally. (I knew this was coming from the advice I’d read and been given on the facebook group.)

So that’s where we sit currently. At the hospital, on day 2 of this awful tube down my husbands nose, vacuuming, intermittently, the contents of his stomach out into an awesome cup. Waiting for him to poop. Its the most uncomfortable I have ever seen my husband. Ever. This tube is the WORST thing. He can’t really speak because the tube drops down through the back of his throat, and it just feels weird and awkward. When they placed it, I can’t even explain the look on my husbands face. Its this awful vulnerability that you have no control over, and, we all know my husband … stoic and without emotion, so having this forced upon him. Its the first time in this entire journey that I think he feels, like really feels, the awfulness of this cancer.

On the bright side, we were transferred to the hospital where my husband had his HIPEC because the ER we were at wouldn’t touch him. We are on the same floor as we were after his big surgery and our surgeon, Dr. Glasgow, is overseeing Andy now. (Little happy dance!) We LOVE Dr. Glasgow! I wish all our doctors were as awesome as he is. When the good doctor came in to check on Andy today we asked what he thought caused this. I told him my concern that it was tumors and he dismissed that saying it was very unlikely that they have grown that fast (but … you know how I disagree with the doctors about the quick-growing-ness of these little shittys, I digress) but at least that gave me some comfort. Dr. Glasgow said more likely this is from scar tissue. Ok, that makes me feel better. He couldn’t offer us a time frame for how long to expect this to take, but he did say the last resort would be surgery because that would throw off his chemo schedule. He also asked about Andy’s chemo and when we told him his first round was this past week, he said that Andys white blood cell count was very low. So the chemo is already having an effect on his WBC, which is something that needs to be watched. Great. Add that to the list! face-palm

Who knows how long he’ll be stuck in here, tethered to this vacuum by his nose, unable to eat or drink anything. Unable to get his strength back before his next round of chemo in just 1 week!! So many things to worry about right now. Its totally not fair. I can’t get ahead of this thing. I just can’t get ahead of it.

UPDATE: It’s Friday and we have been home from the hospital since Wednesday evening! They took my husband in to do a procedure called a small bowel follow through on Tuesday, in which they gave him contrast dye through his NG tube and used real-time x-ray to follow it through his intestinal tract. The procedure was to identify the location of the blockage, but as a side effect, often times, they told us, the dye is so potent, it ends up clearing the blockage. AND IT DID! He pooped!! 4 times! lol Thankfully! They identified the area of the blockage and said there was a prominent “kink” in his intestines caused by scar tissue. They said that he may have to change his diet a bit because this is going to be something he’ll have to live with and deal with permanently. But for now, he should just eat small meals frequently throughout the day and chew his food very, very, very well. He got the awful NG tube removed about 2 hours after the procedure and, my God, he was a whole new human! They kept him on clear liquids for 12 hours after that and Wednesday, he was given the go-ahead for a non-restricted diet! We were discharged around 5pm on Wed evening.

It’s been a bit difficult to get Andy to eat, which is VERY important for his chemo since he needs to keep his weight up. He lost another 6lbs while he was in the hospital for this whole episode, so he’s down to 184lbs now. He needs to get back to at least 187lbs to be eligible for chemo on Monday — but its hard for him to eat because he thinks that this bowel blockage will happen again if he eats too much, so he’s really struggling with the psychological stress all this has caused! All I can do is offer him food. I’m trying not to nag him or to be that person who is constantly worried about how much he’s eating, but it’s top of mind for me. If we have to push out his chemo treatments then we have to endure this nightmare for a longer period of time. Right now, we are looking at this being done and over with by Jan 1, 2020. On that date, it won’t just be a new year, it will be a new beginning! And we can go about our normal, mundane, everyday lives pretending like this whole awful nightmare never happened. I just want normal and mundane back again. I am hoping we can keep that timeline.

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!

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

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 🙂

No Lymphatic Spread

Today, for the first time since this whole nightmare started, I feel hopeful! We had our follow up meeting with the surgeon who did the HIPEC today. He is extremely happy with Andy’s progress and his incision looks really good! He said that all the lymph nodes that were removed, about 20 of them, came back negative for the cancer. HUGE. SIGH.

Breathe. I can breathe!

I am so relieved. I mean, SO RELIEVED! Andy was relieved too. Through all of this, I have been critical of his lack of emotion. He is just a stoic human, that is who he is. But the few times that he has shown me some sign of emotion, it has meant EVERYTHING! Honestly, I can count the times on one hand. 1: The night he told me about the cancer. We both cried, he was clearly upset. It was the first time he had even spoken the word out loud and it was terrifying. 2: The day of the colonoscopy, when the doctor said that she saw no sign of disease. He fiercely grabbed my hand, and with some short breaths and a winced face, he said in a squeaky voice, Oh thank God! As if he could have broken out immediately into tears, but he didnt. He stopped just short, and we sunk into a deep hug instead. 3: Today at the doctors office. He asked about the lymph nodes, and although we assumed that no news was good news, we still had to hear the answer. When the doctor said that the results were negative, Andy grabbed my hand once again, and squeezed it so tightly. I could hear an audible sigh of relief coming from his voice. We were both so relieved.

The fact that I wear my heart on my sleeve shouldn’t come as a surprise to anyone. When my emotions hit, I often overindulge them, both sadness and happiness. I act quickly, often putting my foot in my mouth or saying something sans a filter and regretting it later. This probably happens more than I would like to admit. I’ve lost long time friendships because of this and I’ve damaged relationships. I’m brash, I can be a bit overbearing (especially if I’ve had a drink or 2) and I tend to overreact. But Andy grounds me and puts me in my place, if need be. Its a dynamic that cannot be duplicated and although, as you know, the things he does sometimes infuriate me beyond belief, they are also comforting in a way that I don’t even understand.

At the doctors office, we sat there talking with the doctor and the assistant for a good 15 mins. We asked our questions and when I asked him if he were in our shoes, and knowing what he had seen in our case, what would he be most worried about, he said the disease on the small intestine. This is good to know. He said that spread to the small intestine is often difficult to treat because you can’t just remove the small intestine. He said that he definitely recommends we do the systemic chemotherapy and we not put that off.

Ok, noted. We definitely will not be putting that off. Whichever treatment course we decide on will begin in early July. We meet with the specialists the last week of June, make our decision and then move forward with the regimen. That’s our plan. It feels good to have some structure back in my life. All this waiting and loosey goosey tentative-ness is enough to drive me mad. The dr said that they would do an MRI scan (which he recommended over the CT because there is less radiation involved … which, if you have cancer, ya know, extra radiation is not really a good thing) at around the 2 month mark, before chemotherapy starts. This scan will sort of serve as the baseline for all new scans to be compared against. Even though, he said, the scan will show “thickening” because of the scar tissue and the healing that is still in progress, it will be better than nothing. I asked about the frequency of collection of the CEA and tumor markers, and he said they’d do those every 3 months. Tho he did caution that because Andy’s was already low, they might not be a good indicator of recurrence. He said that if they started out high and then got low after the surgery, that would be one thing, but because his CEA was already relatively low, it might not be the best predictive gauge. Ok, fine. But I still want it tested.

We made another follow-up appt with Dr. Glasgow, our surgeon, for 6 months. He said that he wanted to stick with our case and will be consulting with our oncologist, Dr. Rigden, who will run point for the near term. I don’t love Dr. Rigden, but I do love Dr. Glasgow, and if he trusts her, so do I.

I have learned that positivity will get you so far with the cancer journey, but having the facts and speaking with the people who hold your life, literally, in their hands, is essential. We still have yet to hear from the Sloan Kettering program, so that’s annoying, but I am hoping we hear from them today so I can start getting flights and lodging booked for our trip. That’s the last piece of this puzzle I need to get organized, then I will feel absolutely whole.

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.