Category: Post HIPEC

Radioactive Pee

Day 2 post-MOAS. Yep, you read that right. Radioactive pee. Apparently, my husband is radioactive, lol Anytime someone comes in and has to handle his urine, they have to suit up, wrapping themselves in a special gown, putting on goggles, a mask, double gloves on their hands, using some special radioactive-proof gloves, and footies on their feet. They look like they could walk into Chernobyl and be just fine! Its a bit ridiculous, but whatev, lol

Today has been much better than the past couple days. Yesterday was still pretty rough. Andy was so nervous that if he moved, he would start to spasm again and he was trying to avoid that at all costs. So he basically didn’t move unless he was forced to. His speech was quiet and he spoke in short 2 word sentences the entire day. But today, I walked in around 8am and he was talking in full sentences! That was already an improvement! So I knew he was feeling a bit better, maybe better is the wrong word, he was feeling a bit more confident in the pain management plan.

They got him out of bed and walking around today, the goal is to have him walk (or, ambulate — PT term, lol) at least 5 times. The first time was rough. The PT had her work cut out for her, but she gave my husband some really good tips on how to do this “roll” thing out of bed so he could start to become more independent, and when he was finally standing up, she got him walking! We’ve learned that movement and breathing are of utmost importance right now. We’ve also learned that flexeril makes my husband EXTREMELY sleepy. Which was good for yesterday because he really just needed to make it through that day, but now — he needs to start eating and moving and taking more deep breaths. They are SO concerned about his breathing! We have this ridiculous gadget (that looks like it came from the dollar store) to help him take more deep breaths and measure how deeply he’s breathing. For reference, when I breath into it, I hit 3500. When my husband breathes into it, he barely hits the 1000 mark, usually closer to 750. So we’re working on that today too, but the flexeril is a problem because it just knocks him on his ass and he can’t work on any of the above if he’s sleeping. Its been a bit frustrating, me telling him he needs to wake up, and him saying that he can’t keep his eyes open and just needs to sleep. Ughhh We’re not giving him that drug anymore unless its at night.

How am I doing? Everyone keeps asking me that. Welp, lets recap, shall we? I learned my husband had a rare and aggressive form of cancer, which, btw, was already stage 4, about 4.5 weeks ago and since then, we have done testing, bloodwork, 3 surgeries, including 1 MASSIVE “Mother Of All Surgeries” surgery, and now we’re heading into chemotherapy, I missed my daughters prom, I missed my sons 14th birthday, I missed an opportunity with my career that may or may not present itself again, so. Hmmm. Well, I did get 7 hours of sleep in the last 3 days, so that’s something. But I have not exercised in about 4 days and that is starting to wear on my nerves. I just feel like I want to be here (at the hospital) with Andy. He just needs so much help right now and I am his advocate. He is comfortable with me being here, seeing him in this position of vulnerability, and that is oddly comforting to me. Its not very often you get the opportunity to truly help someone you love, I mean TRULY help them, and I want to be here to support him in every way I possibly can. Not to say he is helpless, but he does need help to do certain basic things. I am honored to be the one to help him.

See? I can be empathetic! I’m not always an asshole!

Today I’m researching more about the appendix cancer specialists we have been referred to. I have contacted both the Houston and the Chicago teams and am in the process of sending (faxing … yes, people still use this antiquated technology. rolls eyes) all Andy’s records to the teams to dive into. I really have no idea what to ask at this point other than to get their opinion on ongoing treatment. Our doctor here in St. Louis is very happy to consult with and work with the specialist teams to implement their recommendations, tho I’m not sure that is what the Houston or Chicago teams will want to do. I suppose those are all answers that I’ll need to get moving forward.

The kids are okay. The teenagers are more worried about what is happening in their lives than in Andy’s, and that’s okay. To be expected, really. I mean, would they actually be teenagers if they were worried about someone other than themselves 100% of the time? Would you have worried about something like this when you were a teenager? lol It’s really our 4 year old who I’m mostly concerned about. At this point, he actually has no idea that anything is wrong — and I give all the kudos to myself for that! I am trying REALLY, REALLY hard to make it seem as tho everything is okay for him. He LOVES spending time with grandma, so that’s who I’ve hooked him up with for most of the time so far. Tonight, a friend of Andy’s, who’s son also happens to be in the same preschool class as our 4 year old (and our kids also happen to be best friends) offered to take our littlest for the night and just bring him to school in the morning. I felt guilty for allowing that to happen, but I have come to realize that I need the help, and since most of my stress comes from making sure that our 4 year old is cared for, and I didn’t ask, they offered to help, I needed to allow that. Once I made that call, it was actually an amazing relief for me. It meant that I would be able to stay with Andy and not worry about being “on” as a mom to a preschooler for tonight. Which any mom can attest to how exhausting that can be.

My role now is to be here for Andy for whatever he may need. I am going to try to get some work in, maybe at least read the emails that are piling up in my inbox, or the slack messages that I have been ignoring — but I was very careful to put the right people in charge of my projects so I wouldn’t have to worry about it while I was out taking care of my husband. I’m not worried, I just want to be sure I’m still in the loop when I start to ramp back up into work again next week. I can’t actually complain about work. Not only do I love my company, but I also love what I do and I love the people I work with, both my coworkers and the customers. As I’ve mentioned before, I am extremely lucky to have the job I do. The flexibility and the understanding I’ve received all the way from the C level to anyone on any team, has been incredible — really, as it should be in situations like this, but I know I’m lucky, and I am thankful everyday for that.

Tomorrow only looks better for my husband and for our family! One day closer to having him home, one day closer to getting him well.

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.