A Shitty Problem

No way to sugar coat this one, we’re back in the hospital again with another bowel obstruction. A really shitty problem that I feel like we just battled with. As of now, I’ve been up since about 3AM when my husband started stirring enough in bed that I took notice. Around 3:15, he got up and exited the bedroom. 15 or so minutes later, he came back in and attempted to lay down again. I could feel him wiggling and moving his knees and as he was laying there, I could tell that he was uncomfortable. Then he got up, moved to the floor and assumed the child’s pose position. I knew immediately what this meant.

Another bowel obstruction.

So, we gather a bag and I appoint my oldest teenager in charge of the 5 year old should he wake up and notice we are not there. I tell her that we’re headed to the hospital and I’ll be back before she leaves for school. So off we go directly to Barnes downtown (a 40 min drive away from our house) knowing that if we go anywhere else, we’d be transferred there anyway and then we’d have another $800 ambulance bill to contend with. (rolls eyes) So we arrive around 4AM and we get checked into the ER. Once they decide to admit my husband, they roll him off for a CT scan, and I decide to head back home hoping I can get back with enough time to catch a quick nap before I do preschool drop off for the 5 year old. However, when I get home, my mind won’t shut off, and my attempt to sleep for a bit is undermined by my anxious brain. So I get up, drop monster off at preschool, make sure my babysitter is avail to pick him up, and rush back to the hospital.

Now, almost 9:30AM, I weave my way from the parking garage up to my husbands room on floor 6. Back together with our old friend, the GI floor, lol Clearly it had been too long since we’d seen the whole staff! The only bright spot here is that we’ll be back under the care of Dr. Glasgow. Our favorite surgeon! So now, here we sit, my husband with this nasty NG tube up his nose and the pump running to suck all the contents out … only nothing is coming out. I realize that every obstruction is different, but last time there were buckets of gunk coming out of my husbands stomach almost immediately after inserting the NG tube. This was gross, yes, but it also alleviated the pressure and the pain he was experiencing. But this time? We’ve been here now for almost 12 hours and he’s still in pain with lots of pressure and NOTHING is coming out of the NG tube!? So I’m not sure what that means.

Fast forward 24 hours later — WOW. Things moved fast yesterday. After hours and hours of my husband being in pain and being uncomfortable, we finally saw our friend Dr. Glasgow around 5pm. He said that the results of the CT scan clearly showed a closed loop bowel obstruction and this was very different than the bowel obstruction he had last time. He said this type of obstruction rarely cleared on its own and suggested surgery ASAP to resolve this. He was worried that if they waited any longer the blood flow to that part of the bowel would be so restricted that the bowel might die and he’d have to remove that portion. Not something we wanted. The thought of putting my husband through yet ANOTHER surgery was literally unbearable, but we really had no choice. We could have waited to see if it cleared on its own, but 1. Andy would have had to suffer through another night in pain and 2. we could have risked further damage to the bowel. So we agreed to proceed and my husband was immediately prepped for surgery. Since Dr. Glasgow is intimately familiar with my husbands history and innerds, he said that while he had him open he would also look around for any signs that the cancer had returned. Honestly, this was the ONE bright spot in this whole awful ordeal! I mean, our cancer surgeon, opening my husband back up to physically look inside with his own eye balls??! This is EXACTLY what I wanted! I don’t trust a CT scan as far as I can throw one. They don’t work for this type of cancer, so I was elated, overjoyed even, that he offered to take a look around while he was “under the hood” anyway!

The surgery only lasted about 45mins, but they went in through the same incision they used last time … and they cut him just as wide open too. Ughhhh My poor husband. The good news, tho, was that everything went just as planned, no surprises! Which I was so happy to hear. Dr. Glasgow said there were 2 prominent “bands” of scar tissue strangling the bowel and another band that was almost as close. He removed them and even went through and removed scar tissue from other areas on the intestines that looked like it could potentially turn into a bowel obstruction of some sort. Then, (my favorite part) he took a look around for any signs that the cancer had returned … and it HADN’T! He didn’t see any signs of recurrence! Hallelujah! He said that he resected a larger portion of scar tissue and sent that to pathology, just to be sure, but he did not expect that to come back positive for cancer. I can’t even begin to describe how relieved I felt when he told me this! I mean, here we were, not even 6 months out from my husbands big HIPEC surgery and he was still clear from the big clean out! Breathe. Such a wave of relief! This is the thing I’ve been most worried about; Tracking this cancer. It seems that CT scans and blood work are extremely unreliable to detect growth, but a surgeons eyes? That is the detection mechanism that will never fail, will never be unreliable and will always provide me with the fullest, most complete picture and the most comfort as we move forward. Now, I realize I can’t really expect this to happen every 6 months, or even every year, but I’ll take it when I can get it, and this is pure joy for me! A nearly 100% confirmation that the cancer had not returned!
…pending the pathology from the scar tissue sample.

So now its a bit of a waiting game. Since he had this surgery, chemo will have to go on hold for 4-6 weeks. I wonder if I can talk my husband into taking the rest of this year off from chemo and having the holidays, then finishing off the remaining 6 rounds in January? I mean, haven’t we been through enough this year??! For reelz. Who knows? lol For now, its back to healing, and hanging out around the house, and more episodes of The Office. (rolls eyes) Which I’ll gladly take any day over seeing my husband in that kind of pain!

Hello? ANC? You Have a Problem

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

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

And there is nothing we can do about it.

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

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

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

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

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

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

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

Whatever, that’s not my life now.

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

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

Have we talked more about the incident? No.

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

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

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.

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.

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.

Lost

Day of surgery. I’m not really sure where to begin. Today started with my husband jumping on the bed doing a Superman pose (something he and our 4 year old perfected) and ended with him reeling in pain, afraid to move, hooked up to wires and tubes and monitors and cuffs and all the things that make people nauseous when they enter a hospital.

The day began with a simple walk down the block to get coffee. After being up since 3:15am, I was so surprised at how alert and calm I was as we were walking into the hospital. It began just like it did a little over a week ago. We went to the waiting room, my husband got checked in and we were called back and showed our bay. We again bagged his clothes and belongings and this time, I put his wedding ring around my thumb. He put on the hospital gown, bare butt and all, lol, and he laid down. However, I was calm. I wasnt panicked, I didn’t feel like I was on the verge of a manic breakdown. I was relatively content. Very different than how I felt last time. I’m not sure why I wasnt a complete basketcase as this was WAY more serious than the other surgery. Maybe it was the fact that I was familiar with the process, maybe it was because I had my best friend there this time, maybe it was because I had JUST done this and my mind hadn’t quite separated the two instances yet? Who knows? But for whatever reason, I was okay.

I cried a bit as I was walking down the hallway after saying our “see you laters” but as I got to the waiting room, I was okay. Then it was time to wait. Have I mentioned I am not patient? Waiting is my mortal enemy and I despise all of it. Regardless of my hatred for waiting, waiting is what we did.

9am – Surgery begins

My husband, being the amazing human he is, somehow talked the head nurse in charge of his operation to call me on the phone and give me a personal update every 1.5-2 hours. I received my first call around 9:15am. She said that he was doing great, that they had just gotten started and all his vitals were good and he was doing really well. This was SUCH a relief! After speaking with her, I felt much better about everything. Calm, organized, in-control. So I popped back over to the AirB&B to take a shower and clean up a bit before the next call from the nurse.

12:45am – HIPEC begins

The next call from the head nurse came in around noon. She said that they had just finished up the resection and right colectomy and they were about to get him prepped for the HIPEC. WHAT? You mean to tell me that the surgery, this MOAS surgery, that was supposed to take 12 hours has, so far, only taken about 3 … and you are about 3 hours away from finishing? I mean, this was the BEST news I could have received! Certainly this meant that there was not much to be done and that was welcomed relief! I was elated, I was energetic, I was relieved! I was SO worried about all this hacking, and slicing, and burning, and cutting, that was going to have to be done, that I neglected to consider that maybe, there wouldnt be much to do! I was convinced that certainly this was good news, and I took it as such.

3pm – HIPEC ends

I received another call from my new head nurse best friend who said they were 1 min away from completing the HIPEC on my husband. All that was left to do was to drain the HIPEC solution, do a saline rinse and button him up! She said he was the picture of perfection in terms of being the ideal patient while he was under anesthesia. He did really well, she assured me, and said they would be done in 1-2 hours.

Relief.

I hung up the phone and started to cry tears of joy. He had made it! It was over! The procedure was a success! They had successfully resected all the visible tumors and performed the HIPEC to get all the microscopic little shittys out, and he was in the home stretch! He made it, he was going to be okay! I was crying tears of relief, tears of joy, tears to wash away this horrible thing that I was sure we were done with! I was so excited! Through my tears I eagerly told the story of what the nurse had said on the phone to my friends and family who were sitting in the waiting room with me. Announcing, HE MADE IT to everyone within an earshot! I was so relieved. My heart leaped with anticipation of when I would see him again.

I was quickly brought back to reality when I was asked to head towards the awful door. The door I kept telling everyone was the “bad news door.” You don’t get called through that door unless its bad news, I would say. I do NOT want to go through that door. Then I get a page from the front desk asking me to head to a conference room through the side door. This was bad news. This was the room that they told me my husbands cancer had metastasized, this was the room I NEVER wanted to be invited to again. I cringed as I got closer and I could automatically feel myself start to panic. I told myself that the doctor would just come in and give me the wonderful news! The news that the nurse had already given me the heads up about. That the surgery was a success and my husband was cured! <– expectation : reality –> Dr. Glasgow came into the room and did indeed tell me that he was pleased with the outcome of the surgery today, but that we are not talking a “cure,” we are talking staving off of an eventual recurrence.

Ummm, what? Wait. What? Sorry, but that is NOT what I wanted to hear. Nope, that can’t be the case. That is NOT the situation here. That’s not what I thought I was going to hear.

But what could I do? He told me that the cancer had crept into my husbands colon, small bowel and pelvic region, and although he removed it, the fact that it had spread so much in just one week was concerning. He said that he would reclassify my husbands PCI number as 8 (from a 4-5 last week) and reminded me that even tho he removed it, these were “very aggressive looking cancer cells.” I asked him if this was PMP, a slow growing version of appendix cancer, and he said, No. This was definitely mucinous adenocarcinoma, the fast growing, high-grade version, and it was invasive.

I was shocked. Actually, I didnt really know how to react to this new info. I was just on cloud 9, on top of the world because the nurse called and said that the surgery was successful, now this? I learned that while they definitely considered my husbands surgery a success, this cancer was not gone. When I asked what the next steps were, he said systemic chemotherapy. He said my husband would be off work for the next 4 weeks, he would need about 6-8 weeks to heal, then we’d begin chemo using FOLFOX. Ok. So there was the plan. But I also needed some additional opinions from an appendix cancer specialist. Dr. Glasgow recommended someone in Houston and I had done some research on a place in Chicago, so I also had a plan. I thought it would be a good idea to get some additional eyes on this thing and to see if the collective opinion on the approach with the systemic chemo was the best route for follow up treatment to the HIPEC.

My husband was being transferred to the ICU for close observation after the surgery. To say I was anxious to see him for the first time after this massive surgery, would be an understatement. I wanted to see him to know he was okay, I wanted to see him awake and breathing, I wanted to hold his hand and kiss his forehead, but when I got in the room, he was reeling in pain. He was holding on to the sides of the bed, white knuckled and yelling FUCK! FUCK! FUCK! It was all I could do to just stand there out of the way while the nurses and pain management team tried to figure out the right regimen of drugs to control what was clearly an immense amount of pain. I was completely helpless. I felt like bursting out in tears and yelling at the team to do something to help him (they clearly WERE doing something, but in my mind, it was not enough) but I stayed strong. The last thing my husband needed right then was for me to lose my shit. That was hard. To see the person you love most in this world in the most pain they have likely ever been in, knowing that not even 10 hours ago, they were completely fine. Happy. Healthy, sort of. And smiling. Now this. Pain, scars, cancer, tubes, monitors, ICU, hospital beds, catheters, nurses, doctors, NP’s, specialists, anesthesiologists, oncologists, surgeons, pumps, blood work, tests, everything. Every. Fucking. Thing. I knew that from today on everything would be different, but I guess I didnt realize just how different it would feel.

MOAS

May 6, 2019 Today’s the day I’ve been dreading. Here I sit, 3:43am. Unable to sleep. Laying next to my husband in bed for what could be the last time in a few weeks. He is sleeping, I am worrying. I can’t sleep, tho I am exhausted already from what I know will be a grueling day. We rented an AirB&B close to the hospital so I could have a “home base” somewhere other than the hospital waiting room. Patience has never really been my thing, so waiting for what could be 12+ hours as my husband is sliced open, laying completely exposed and vulnerable on a cold operating table, is literally my nightmare.

Still, here I sit. Awake.

Today’s the day that everything changes. My husband does not know much about the surgery he’s going into. He knows, however, that I have become an expert, and he looks to me for just a little bit of guidance when he’s curious enough to ask. By now, I know how much info is too much for him and I’m beginning to become really good at figuring out exactly what it is he’s wanting to hear. Not details, nope, he doesn’t want those, he wants to know outcomes. I can’t blame him. I can’t say that going into this completely blind and unaware of what they’re going to do is any more or less a strategy than knowing exactly what each and every phase of the procedure entails. Who knows if I would want to know as much as I do if roles were reversed? Scratch that. I definitely would want to know.

I’m terrified.

How will this recovery be? My husband seems to have his eyes set on a 10-day max hospital stay and a good bill of health to be driving in 2 weeks. (rolls eyes) From the research I’ve done, I know a more realistic stay would be 10-25 days. With fully functional mental capabilities (meaning the ability to be productive at work) in 3-4 mos. His work is being extremely flexible, just as mine is, and they have told him they’ll just continue to pay his full salary until he comes back to work. He has refused to even think about filing for short term disability, which is extremely frustrating for me since I think he is going to be out far longer than he expects. But we don’t know what we don’t know right now, and I guess that’s okay. Who knows? He might prove me wrong and be up and popping about within a few days of this surgery!?

How will his scar be? Is it terrible that I am worried this scar will be disastrous? I look at his chest now and all I see is soft skin. I am nervous that this ugly hard thing slicing down the middle of his chest and stomach will be a constant reminder of cancer, and I hate that. It will ruin a physique that I adore and is completely perfect in my eyes.

How much will our lives change? I’ve been spoiled having Andy as a husband. He has taken on a huge part with raising our youngest. He gets up with him in the mornings, he gets him ready for school and gets breakfast made for him. Mostly just opening a pop tart and grabbing a cup of fruit or a banana and some cheeze its, lol Breakfast of champions! But HE does it and allows me to sleep. He brings him to school on his way to work and also picks him up on his way home. He does it not because I can’t, but because he wants to, and he enjoys it. How will all this effect our little routine-driven 4 year old when daddy can no longer take him to or from school? It’s just so much change all at once and it scares me.

We filed his advance directive and power of attorney paperwork with the lawyer this week. I refuse to go into this naive. I know that everything will be alright, but we need to be prepared for any situation. It’s bad enough having to think about estate planning and end of life planning when you don’t have cancer, but thinking about it knowing that you might need it sooner than later? Awful.

I guess I’m not going back to sleep tonight (this morning?) Too much on my mind.

Plan B

Where I currently find myself, staring at Plan B, which is scheduled for Monday, May 6th. A mere 2 days from today. This plan involves a surgery which has been dubbed MOAS, the Mother Of All Surgeries. It includes a cytoreductive surgery, plus the right colectomy and any debulking that needs to be done, combined with a procedure called HIPEC. It is a 12-16 hour surgery in which the team goes in and removes all (or as much of) the visible tumors as possible. They take each organ and inspect it for tumor nodes and resect (remove) as many as possible. Then they do a targeted chemotherapy treatment directly in the abdomen. Its awful. My husbands body will literally be spread open and his insides exposed for hours. The infection rate is dismal, the opportunity for something to go wrong is high. Its terrifying. But so is having stage IV cancer. What is our other option? Do a traditional chemotherapy treatment, which, I think, through the research I’ve done, I know not to be very effective for this PMP type of cancer.

I have good days and bad days. I am trying to stay as positive as possible but my mind is consumed with this barbaric procedure that my husband will have to endure. I’ve been trying to keep busy with work, but as soon as I start something, my mind immediately comes back to this. I am so lucky to have a job that supports me and is understanding of what I’m going through. I know not everyone is as lucky as I am in terms of flexibility and I cannot imagine having someone hold job performance over your head as you’re dealing with this. Like you don’t have enough to worry about. And me? My job? My P1 team and my opportunity that I had been working for, waiting for? That was on hold. In life you have few chances to choose the right thing. To prove to yourself and to the people who you hold most dear that they are truly your priority. My family is my #1 priority and there was no question in my mind, this wasn’t a choice. When they need me most, I will be there. Everything else gets moved to the back burner. Period.

What I am yet to understand is how this thing could have spread so uncontrollably with absolutely NO physical symptoms!! I mean, how does that happen? One of the reasons we were so convinced that Plan A was going to be our path was because my husband was completely fine! I mean, if someone had stage 4 cancer, you would think they would be exhibiting some kind of symptoms, right? You see people with stage 4 cancer on their death bed, not up, frolicking around with their 4 year old and living a completely normal life. How did this get so out of control so quickly? And why did they not resect it when they first saw it at the last surgery?? All these questions roll through my head with no time left to ask them before the surgery on Monday. I didn’t even have time to get a second opinion before all this was set into motion. Now, if we pump the breaks, we basically risk the cancer spreading more prolifically and being worse — a risk I am not willing to take. I am convinced enough and have enough evidence from the research I’ve done to know that this HIPEC is our best hope, so the fact that our doctor is using this as a strategy to attack the cancer is good enough for me at this point. But I am worried. I recently connected with a facebook group for people with appendix cancers, PMP and PSM. And the thing that EVERYONE keeps telling me is to get with a specialist who knows about appendix cancers. Our doctor does not, he is not an appendix specialist, but he is the only one in our area who knows how to do HIPEC and if we end our journey with him after the HIPEC and seek out someone who is more experienced with my husbands specific cancer, we do that. But we’re sticking with him through the procedure.

But what happens after that?

I didn’t get a chance to even ask that question. Never in a million years did I think I’d be in this position, but also, never did I think that we’d have to resort to Plan B, so I never asked any of the questions around Plan B — and what comes after it. Is it a round of traditional chemo? Has that recently been found to be effective? I have no idea what’s next.

Plan A

On April 26, 2019, my husbands surgery was scheduled. This surgery coincided with not only my 17 year olds Junior Prom, but also my middle child’s 14th Birthday. When it rains, it pours.

We were scheduled for surgery at 2pm. We knew that the plan was to go in there, do a bit of exploratory work, confirm that the cancer had not spread, and then do the right colectomy. This was supposed to take 2+ hours. I didnt know what was going to happen, but I did know that we needed this surgery to take 2+ hours, because if it was shorter, that was bad news.

We got to the hospital around 11:30am. My husband got checked in, and we began the agonizing process of waiting. They called him back and he was allowed to take 2 people with him, so I went. They put him in a bay, had him bag his clothes and belongings and take off his wedding ring, which I took and hung around my neck on a necklace I was wearing. He put on a hospital gown, bare butt and all, and he laid down. Its so surreal to go voluntarily into these types of situations. You hear about people having surgery and having cancer and you always think that this is forced upon them. Like they are dragged kicking and screaming into the room or something — maybe a bit ridiculous, lol But you certainly do not think its such the mundane process that it actually is.

As they hook him up to monitors and tubes I start to feel myself getting anxious. But Andy, he’s the picture of calm. Up to and including this point, he feels completely fine! He is completely asymptomatic. He feels fine, he looks fine, he has no pain, no special diet he has to follow, he is, for all intents and purposes, healthy as a horse … except that he has cancer. He went in to work each day since his diagnosis, he had been a complete rock while I was a total basketcase. Back in the hospital, the nurses tell me its time to say our “see you laters” … I guess goodbye would be too ominous, lol But I can’t help but start to panic. I grab the plastic bag with my husbands things in it, I wrap my arms around him and I tell him he is my everything. I tell him I love him and I cannot live without him. Then I leave. Through tear soaked eyes, I find my way out to the waiting area, where I sit, and cry. The whole time I’m nervous. I keep pacing back and forth. I go between being calm and being a mess. 45 mins after the procedure begins, we get a page from the front desk to head to a conference room through a side door.

I knew what this meant.

The surgery had not gone as they’d planned. I broke down and started sobbing into my dads arms. Dr. Glasgow came into the room and talked to us. He confirmed that the cancer had spread to 2 other organs, the small intestine and the peritoneal wall. Andy was in stage 4 cancer. They did not do the right colectomy as planned, they backed out and closed Andy up, and moved to Plan B. My husband was in recovery and was able to go home within the next hour.

Oh my God. It metastasized. Oh my God, how could this have happened? This puts him in that horrible survival rate statistic range! Not him. Not my Andy. No fucking way.

Dr. Glasgow had taken pictures of the spread and since I had become an information junkie, I needed to see this cancer. I needed to put a face with this enemy! And here it was. It looked like fish eggs. You’ve got to me kidding me!!? This. This is what we’re dealing with? Just take them out! Cut that shit out and let’s be done with all this! Patience has never been my thing.

Plan B. That’s the plan we hadn’t considered because we knew Plan A was going to be all he needed. This little shitty had spread to 2 other organs in a matter of 4 weeks! That was just unbelievable to me! It is still unbelievable to me considering the entire time, you would have never of known he was sick at all! But here we are. Stage IV cancer. On to Plan B.

It’s Cancer

Wait. What? No. Wait. WHAT?

Staaaaaaapp. It’s not cancer. That’s ridiculous! You’re 38 years old, you have a 4 year old who needs you, you have 2 rowdy teens who are the thorn in our sides right now, you have me, who certainly cannot do life alone without you. You have NO family history of cancer, like NONE. So, this cancer thing? Nope. You don’t have that.

But he did.

A week after he had his appendix removed, on Thrs, April 4, 2019, the dr who removed the appendix called. He had sent the appendix to pathology, as standard operating procedure, and it came back as mucinous adenocarcinoma. So, not only did he have cancer, but he had a cancer that was so RARE that noone had ever seen a case in our area. AND, as the cherry on that shit cake, it was a bad form of cancer, something that was extremely aggressive and had this mucinous element to it which meant that it’s easily spread.

Meanwhile, I was in San Francisco for another in-person workshop with the P1 group. One of my best friends also lives in San Francisco, so whenever I travel there for work, I always try to make a trip to see her. So I planned to spend the weekend with her and just hang out before coming back to St. Louis on Sunday.

My husband had cancer. He didn’t tell me. He didn’t call me when he found out. He didn’t beg me to come home. He didn’t say anything, he didn’t tell anyone, he just let it process within himself. Until Sunday. I got back from San Francisco in the mid evening, around 8-9pm. I walked in the house and the whole house was quiet. I set my luggage down and started to unpack the Chipotle bag that I picked up to eat on the way home from the airport. I see Andy walk gingerly down the stairs, aggressively holding on to the railing, taking each stair slowly and making sure to place both feet on each step before taking the next step down. I remember feeling like Really? You’re still milking this appendix thing? (roll eyes) I had a whole conversation with my friend in San Francisco (who happens to be just as big of an asshole as I am, lol) about how we are just not empathetic towards certain types of situations! We were commiserating with eachother about how other people are ridiculous when it comes to being sick and neither of us had any type of sympathy for that behavior.

But then something changed. Andy started to ask me what I had going on the next day at work and what my schedule looked like the rest of the week. He offered to take my bag upstairs and told me I needed to eat — which isn’t really too weird, but the way he was saying it, like he had something to tell me and he wanted me to get through the food before saying anything. I asked him what was wrong because he was just acting weird. He continued to tell me that I just needed to eat right now and we’d talk later. Not accepting that as an answer, I poked harder for him to just tell me what was going on. So there he stood, on the other side of our kitchen island. He said “It’s cancer. I have cancer.”

Wait. What? No. Wait. WHAT?

I ran to him, hugged him and we both cried into each others arms. He told me that the dr had called him on Thrs and told him the news. I was so angry that he didn’t call me right away, but I understood why he didn’t. He said that he wanted me to have a good time with my friend and that telling me on Thrs wouldn’t have changed anything, so he made the decision to let me have my weekend of fun and just tell me when I came home. So there we were. He showed me the pathology report, of which I understood nothing. He told me the name of the cancer type, of which I couldn’t pronounce. He told me that I was the first person whom he had shared this news with. So, like any sane human, I went immediately to Google. I typed in appendix cancer, I typed in mucinous adenocarcinoma, I typed in anything I could think of that would yield some sort of information on what we were dealing with.

Nothing.

This thing was SO RARE, not even Google knew much about it. Possibly for the best, but infuriating nonetheless. The dr who did the original appendectomy said that he had done some asking around because this thing was so rare — even the DOCTOR (who removes appendix’s for a living) didn’t know where to turn to for help!? However, his research kept coming up with one name, Dr. Glasgow at the Center for Advanced Medicine within Siteman Cancer Center in Barnes-Jewish Hospital in St. Louis. He is the only surgeon in the area who does an extremely specialized procedure called HIPEC, if needed. So Andy had made an appointment with him for the following Thursday morning.

Since our attempts to research this thing were proving to be futile, we decided that we were just going to keep this to ourselves until we knew more and had more information. So we spent the rest of that week pretending like everything was fine. But I was terrified.