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!