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 🙂

Up In Smoke

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

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

Until this weekend.

Come on. Are you fucking kidding me?

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

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

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

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

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

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

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

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

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

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.

Timelines

Something the oncologist said keeps haunting me. She said Tumors don’t just grow like wildflowers, they take time, this was her explanation of why they only recommended doing a scan every 3-6 months to check for regrowth.

So I have been going over everything in my mind, like over and over and over again. I challenged her when she said that tumors don’t grow quickly, but then I recoiled a bit because, honestly, what do I know?

Here’s what I know; timelines.

March 2-6, 2019: Andy visits his friend who lives in Seattle. He had similar pain to the appendix rupturing pain during this trip. We summize that possibly his appendix perforated a bit, but then healed itself, allowing Andy to go about his normal life for a few more weeks.
March 26, 2019: Andy comes home from work in a lot of pain and goes to bed immediately. Likely the appendix ruptured this day.
March 28, 2019: Andy goes to urgent care then to the ER for an appendectomy for what they thought was appendicitis. Surgeon who removes the appendix notes that lymph-vascular invasion and perineural invasion are not identified. Appendix is sent to pathology.
April 4, 2019: Andy is notified that the pathology report showed he had appendix cancer, mucinous adenocarcinoma.
April 11th, 2019: We meet with a colorectal surgeon, Dr. Glasgow, who recommends a laparoscopic procedure with a Plan A and a Plan B. Tests are ordered to gain as much info as possible before the surgery.
April 16, 2019: Andy has a colonoscopy. They removed an extremely small, what the doctor called, pre-polyp, but his colon and the beginning of his small intestine were otherwise given a clean bill of health. Both were completely clear and without disease. His CEA score comes back as normal, 3.2.
April 26, 2019: Andy has the laparoscopy procedure to do the right colectomy, Plan A. It is found that the cancer has spread to the peritoneal wall and the small intestine. Confirmation given that Andy is in stage 4 cancer. Dr gives Andy a PCI score of 4-5. The Dr backs out and moves to Plan B, CRS+HIPEC.
May 6, 2019: CRS+HIPEC procedure. Dr finds the cancer in more locations in addition to the two already identified (unclear if this was new growth or if he just didnt see it during the laparoscopy.) As a recap, the cancer has now spread to the peritoneal wall, 2 separate areas on the small intestine, a tumor has formed in the colon and some nodules are discovered in his pelvis. Dr achieves CC0 but revises his PCI score upwards to 8.
May 16, 2019: We meet with the oncologist, Dr. Rigden, who recommends 12 rounds of systemic chemotherapy with FOLFOX and scans every 3-6 months to check for regrowth. I request they do genetic testing on the tumor itself to try to identify any specific markers that will allow us to treat it better. Also request they do bloodwork to get his current CA19-9 and CA125 tumor markers.

How much time has passed in this whole timeline? 7 weeks. Just. 7. Weeks. Okay, 11 if you count the Seattle date, but still! I mean, you tell me, does that seem like a fast growing wildflower? If you want to argue that I have no way to tell when the actual mucin emerged from the original tumor in the appendix, sure, I can buy that argument. Because technically, its true. There is no way to tell when the tumors started to grow outside the appendix, or even in the appendix itself. However, I do know that as of the colonoscopy on 4/16, Andy was given the all clear, and on 5/6 when they went back in for the HIPEC, there was a visible tumor emerging from the colon. Soooo, wildflowers? Yes. That was 3 weeks. A 3 week timeframe from when we got the clean bill of health from the colonoscopy, to the HIPEC where we saw that the colon was being invaded.

I don’t know how to make this more clear to the doctors. This is not some wait and see cancer, this is a rip your heart out, take no prisoners, dead in 2 years, fucking evil enemy that needs to be stopped! Because I’ll be damned if I’m going to sit idly by while they just wait and watch my husband die.

The First Time

Yesterday we met for the first time with an oncologist. She was recommended to us by our surgeon and is located within 15 mins of our house! AND, bonus, one of my sorority sisters from college is the lead nurse in charge of the center! That’s the good news.

The bad news is that we (and when I say we, I mean I) didn’t really learn any new information from this meeting. She basically just went over what I already knew was coming down the line. FOLFOX was the recommendation for the chemotherapy regimen and she suggested 12 rounds. Each round is approx 12-14 days, back-to-back. For those who, like me, are not well equipped in the mathematical dept of their brains, that is about 6 months. We also found out that Andy lost 20lbs. He’s down to 190lbs, from his normal 205-210lbs. Everyone keeps telling him he looks great, but to me, he looks sick. He’s lost almost all his muscle tone, his once strong arms are now a soft squishy version of what they once were. His voice has taken on this more high pitched tone. He has never been one to have an extremely low man voice, but it’s almost squeaky now. I’m not sure if that’s a symptom or if that has anything to do with it, or if its just easier to speak in a high-pitched tone because of the incision? I have no idea, but its a little irritating. I’m living life in a bit of an irritated mood lately, hoping this passes soon. Im not normally this pessimistic, but I think maybe I’m just trying to keep a realistic perspective on things. Maybe it’s a coping mechanism. Really hoping it’s temporary.

On the positive side, he finally let me grab a pic of his incision. They didn’t put in any stitches or staples, just glue on the outside, so it’s not as gnarly as it could have been. But I can see the remnants of where they used stitches to close him back up while they were doing the HIPEC, and the thought of that just makes me want to curl up in a ball and die. Besides that tho, everyone keeps telling him how good it looks, so that makes me happy!

It was good that the oncologist talked to Andy about the chemotherapy because he was not hearing it from me. Everytime I try to talk to him about what comes next or what the side effects might be or any of this, he completely shuts me down and says, Lets just wait and see what the doctor thinks. Meanwhile, I already know what she is going to say and have formulated questions because I’ll be damned if I’m going into a meeting completely unprepared for what is discussed. But that is not Andy’s approach to this. It is infuriating. He won’t listen to me, he does what he wants, and if he chooses to go blindly into this the same way he went blindly into his surgery, whatev. Again, I can’t say that his strategy is any better or worse than mine, its just an approach I would never take, and I struggle to understand it.

We did request some genotyping for the tumor itself and for Andy so we can get a better handle on some targeted therapies that may come about because the tumor shows a specific gene marker. We also learned that the tumor has been saved. Which we found disturbing and gross, but apparently, its standard practice. The tissue gets saved and stored so biopsies and testing can be run on it for future research or to see how much a future tumor has mutated from the original tumor itself. I am finding all of this extremely fascinating. It truly is remarkable what can be done right now! It sucks that it has to be done on my husband, but I’m trying to extrapolate some good here, and a newfound interest in biomedical research is one of those good things.

We’ve also decided to try to get an appointment with a team in NY instead of Chicago. The Memorial Sloan Kettering Cancer Center is where there is a doctor who studied under the doctor who pioneered the HIPEC procedure (Dr. Sugarbaker) and has a whole team of specialists who deal with appendix cancers. So we’ve switched gears a bit on our second opinions, we’ll go to MD Anderson in Houston and Sloan Kettering in NY. Now we just have to be accepted as a patient. Its all a stupid waiting game.

I hate waiting.

There’s this problem with getting Andy’s medical records transferred (faxed, lol) because the records are not avail until 10 days post-hospital release. So we can’t even send them to Houston or NY until May 21st, but we are on a bit of a time crunch because Andy is due to start chemo between 6-8 weeks post-op. So I’m targeting round 1 of chemo for the last week of June or first week in July. That gives us approx 5 weeks to get the info to the specialist teams, be accepted as a patient, schedule an appt, travel to both locations and have the full workup done in order for them to provide us with a plan of attack. Then we have to compare that plan with the plan that our St. Louis team recommends (FOLFOX, 12 rounds) and decide what to do.

What to do. What to do?

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.