Expert Opinions

We got back from our whirlwind trip to see the appendix cancer specialists last night. From St. Louis –> New York –> Houston –> St. Louis in 7 days. We were pretty exhausted yesterday, so I went to bed at 10pm, Andy stayed up and smoked a half pack of cigarettes. Gross. (Don’t EVEN get me started, ughhhh)

I digress. I am happy to report that the trip was a complete success! We did indeed get to spend some “vacation” time together, it wasnt all doctors visits and cancer talk. New York was what I was looking most forward to, but Houston was the part Andy was most excited about. My husband has family in Houston and we dont get to see them very often, so when they offered to have us stay with them while we were there, we happily accepted.

We got to New York on a Wednesday evening. Our flight was delayed a bit so we got in a bit later than we wanted, but we still had enough time to grab a .99¢ slice of pizza (something my husband really wanted to do, lol) and head to Times Square. This was Andy’s first time in NY and I really wanted to show him the sights! As you can imagine, me being Type A AF, I am a planner. If this trip had been last year, I would have had almost every second of it planned! I would have a back-up plan for any plan that didn’t pan out and I would constantly keeping track of time to make sure we were on point. But this was different. Mind you, I still needed to plan something, but I didn’t want to be over planned because I wasn’t sure how the travel and all the walking would affect my husband’s energy level. But you must know; I have a problem with last minute change and failed expectations. Something that happens to me when I plan things, is that I get disappointed when the thing I plan doesnt work out, or something happens and we miss it, or something goes wrong. I try to be flexible, honestly, I do try! I give myself pep talks and tell myself that everything will be fine if something falls through … but it just effects me negatively no matter what I do. I didn’t want this to be the case in NY, so I tried to limit my planning, but the only 2 things I planned ended up falling on the same day — and that ended up being too much. I had a fun architecture tour planned in this awesome 1920’s style yacht on the Hudson River that was scheduled at 2pm. Then, I wanted to do a nice dinner. One nice, fancy, expensive dinner in New York City, and the only reservation they had avail was at 5:30pm the same day as the architecture tour. So I booked it. I REALLY wanted to do it and since the tour was only 1.5 hours, I was sure we’d have plenty of time! I was wrong. On the way back from the architecture tour, I wanted to make a quick pit stop at the 9/11 Memorial. It was one of the most impactful things I had ever seen and I wanted to share that with Andy. But my husband wanted to head back to the hotel to rest a bit before dinner, and I pushed him too far by forcing him into sightseeing. We got back to the hotel with only 5 mins to get ready for our fancy, expensive dinner. I was fine, luckily, I was pretty much ready except for my quick change of clothes, but Andy was exhausted even before we got back to the hotel. He was almost falling asleep at dinner, and me? I wanted to go out for a night on the town! I was dressed up all cute and had curls in my hair and I was in New York! I wanted to have a fun night!

Nope, not in the cards.

When I suggested to my husband that we head to the bar area of the restaurant after dinner for a few more drinks, he declined. It was 7pm. I was a bit perturbed even though I knew he was exhausted, even though I knew he was tired, even though I knew he was at the end of his rope. I still wanted to have fun. For me, this night was not over! I didn’t want it to be over. But we went back to the hotel anyway, he laid in bed, I changed out of my fancy dress and decided I was going to go back out. We had passed an outdoor bar gazebo thing on our way back to the hotel so I decided I was going to go there (by myself) and just sit and have a glass (or 3) of wine. So I did. I sat there fuming because of the situation. I was pissed off at cancer. I was pissed off that this had happened to my husband and wiped the person who he used to be out of existence. I wasnt asking for much, just a night out with the man I love, and cancer took that away from me. Fuck cancer.

The next day we met with the oncologist at Memorial Sloan Kettering. This was the moment I had been waiting for! What would she say? What would she suggest? What more in-depth and useful information could she offer to us? After all, she WAS the expert in this specialty area! The appendix cancer specialist whom I researched and sought out especially for her guidance. So, what did she say? “12 rounds, FOLFOX chemotherapy, with follow up CT scans every 3-6 months” … and I was a bit dumbfounded. She literally, almost word for word, echoed what our team in St. Louis had already recommended. No additional insight, no useful tidbits that could help us unearth new information, no new medically advanced scanning equipment which could offer us a more proactive view into tumor growth, no new treatments, no new advice, no new conversation starters, just the same thing we had already heard. The. Same. Thing.

It was a bit anticlimactic.

So when we got to MD Anderson in Houston and spoke with the expert there and heard the exact same thing, I mean, I guess the confirmation is a good thing? But I don’t know. I suppose it’s better than the alternative, right? I mean, what if we had heard 3 opposite opinions and were offered 3 different courses for treatment — and then it would’ve been up to US to choose the one we wanted! Yikes! I mean, that would have been a nightmare! So this is good.

So here we sit now. The team at MD Anderson did not offer us a consultative option, which means that if we wanted them to provide anything other than a second opinion, we’d have to go through them and only them. The oncologist at Sloan Kettering was much more willing to work with our St. Louis team to check over Andy’s scans and suggest additional treatment options if this cancer returned. She will provide her expertise and consult with our boots on the ground team here, so that is who we’ll be using moving forward. Now its just all about getting Andy scheduled for all the pre-chemo stuff that needs to be done. He needs updated blood work to check his CEA and tumor markers (CA19-9 and CA125) and he needs a new CT scan to provide a baseline for future scans to check against for regrowth of the tumors. He needs to get the chemo port installed which is an outpatient surgical procedure. Then we need to schedule his first chemotherapy cycle. Oh man. Typing that just gave me chills. I don’t want him to have to go through this, but all the experts said that there is a very good chance that this is in his bloodstream and the systemic chemo should wipe it out. But he will never be “cured” of this. The best we can hope for is NED (No Evidence of Disease.) Sometimes people go decades being NED where it comes back after 15 or 20 years. Point is, this is never something we’ll be rid of. It will always be in his body, it will always be something I’ll worry about.

But for now, at least we have a very, Very, VERY clear path forward and I am hopeful that all my worrying will be for nothing because Andy will push through chemo, like he did with the surgery, with very little side effects and a quick recovery period! No, he’s not 100% yet, hell, he’s only 7 weeks post-op at this point! But he’s definitely 80-85% and while I may want him to be back at 100%, I know that is ridiculous. We’ll get through the next 6 months of chemo and we’ll hopefully be done with this! I hope this blog comes to a quick close 🙂

Up In Smoke

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

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

Until this weekend.

Come on. Are you fucking kidding me?

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

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

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

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

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

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

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

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

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

In A Holding Pattern

This week brought some new information. And more waiting. Ughhh, lol We met with the oncologist last week and I requested she test for tumor markers CA125 and CA19-9, which I’ve learned, through my research, are used frequently alongside the CEA number and PCI. Tho not really as predictive in terms of overall survival as the CEA (which seems to be the top dog in prediction stats) it will still give us something to measure. And since I’ve learned that this measurement concept is not really something people are familiar with or take seriously in the cancer world (WTF is right!) I’m going my own way with this one and collecting all data points I can get my hands on.

We got the results back (and a recap of current state):

CEA: 3.2 (within normal range, tho 3.0 and below is considered completely normal) Looking for 6 or below
CA19-9: 14 (within normal range) Looking for 37 or below
CA125: 57.8 (high) Looking for 30 or below
PCI number: 8 (moderate) Looking for 6 or below
CC score: 0, which is best case scenario

So again, I have to remind myself that the tumor markers are not really predictive in any way, they are just numbers to track. But the fact that one is almost double what it should be, that makes me nervous. Actually, now looking at the overall picture here, its not awful, but it gives me pause. What keeps me up at night is that if I were to take these tests, (and actually, I WANT to! I want to know what my numbers are and then have our goal be to get Andy’s as close as possible to mine) they would likely be sitting at 0. My CEA would be 0, my CA19-9 would be 0, my CA125 would be 0 (I wouldn’t have a PCI or CC score as I do not have a disease to track the coverage of or figure the completeness of removal for.) But it tells me that something is off with my husband, and that just makes me feel uneasy.

In other news, my husband went back to work this week! Yep. Day 15 post-op, he went back to work full time. He’s insane! Ha I’m not sure how he’s keeping a clear head while working, I still feel extremely unfocused and I really have to try SO HARD to get into “work mode.” Tho his work is more get-things-done-right-now type of stuff where he’s constantly putting out fires all day. Whereas mine is more strategic thinking and programmatic overhauls where I have to come up with new program lifecycles and consider governance and implementation. So I really need some focused brain power to get into all that thinking, I’m hoping this long weekend (Memorial Day) will help me clear my mind and allow me to get back into things on Tues when the work week starts again. I really need to start focusing back on my work, I have so much I need to make up for! If only my will to WANT to do good work could tell my mind and my heart to FOCUS on the work that needs to be done!

Andy was accepted into the MD Anderson program in Houston, which is AMAZING news! We also cleared these second opinions with the insurance company who said that they would pay for as many second opinions as we wanted. Also good news. I am awaiting Andy’s acceptance into the Memorial Sloan Kettering program in NY, actually, I just called our case worker who confirmed that they had received some of the paperwork and were reviewing it, but they had not received all the paperwork as of yet, so there has not been a determination. Ughhh More waiting. I am hoping to get these appointments made the same week so we can kill two birds with one stone, so to speak. Currently, our appt in Houston is the last Monday in June. That is a bit later than I wanted, but it was the first avail appt with the team we needed to see, so it is what it is. I am also, kind of, (secretly) hoping to use this as a bit of a little vacation for me and Andy. I know that we will be doing testing and that is terrible, but he will begin chemo, likely, the week after that, so he is going to feel like crap for 6 months. This might be a good way to celebrate us and how far we’ve come through this and just take a moment to have some fun before this new reality sets in again. We’ll see.

Timelines

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

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

Here’s what I know; timelines.

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

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

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

The First Time

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

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

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

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

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

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

I hate waiting.

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

What to do. What to do?

Type A AF

Ughhhh. You know what I can’t stand? Not being in control. You know what is completely out of my control? Cancer. My good friends coined the phrase “Type A AF” to describe how I am. I dig it. Anyway, I just got back from a run (I am an avid believer in exercise, whether running outside, using my Sweat app or doing a pre-programed run on my treadmill, it keeps me sane and gives me a place to safely distribute negative energy) and my husband is on the phone with someone. I come in, sweaty and breathless, after pushing the last minute at a close to sprint pace, and head towards the office where he is sitting talking on the phone. I mouth the words Who’s that? and he tells the caller to hold on, then mutes the phone and says, Its a case worker from UHC. Immediately interested, I start to listen in to the conversation. He knows Im interested in whats being said, he knows I feel completely helpless and out of control when he takes these calls and doesn’t allow me to hear or have a word in the conversation, but sometimes he has this I-don’t-care attitude. And he has that now, he gets up and walks out of the office.

Ok. Well, I’ll follow him, I think to myself. Not intentionally follow him, but moving about the house to the places he is. He’s a pacer when he talks on the phone, he can’t sit in one spot and have any conversation. He walks around like a zombie, unaware of where he’s headed, without a care, just aimlessly walking. He ends up going to the back of the house in the mud room, so I go back there to drop my headphones and runcase for my phone — where, mind you, I keep these things, and when he sees me there, he gives me this, humpf look, throws his hands up and exits the room. Like he doesnt want me to know what’s being discussed or otherwise doesnt want me to hear. Ughhh I am immediately aggravated that he doesnt want me included in whatever conversation he’s having. I’m sure it was not really an important conversation, but that’s not the point. We had this happen once before when I requested a conversation with our surgeon the week before the surgery. A conversation with the person who was about to cut open my husband and slice and dice for hours. Andy did not have any questions, but I had a whole slew of questions I wanted to ask, and some of them Andy deemed as “not important.” I, however, thought they were all vitally important and I wanted to ask them regardless and hear the doctors response. So we took some time to write a list of questions. It was a bit of negotiation between what I wanted to ask and what he agreed to having me ask. Whatever, I got the majority of the questions I wanted in. The next day my husband calls me on his work cell because he had the doctor on his personal cell and he wanted me to be included in the conversation. Ok, awesome, only listening to the convo, I could tell that this was not the beginning of the conversation, it sounded more like the end of the conversation. So he asks me to read off the questions as we wrote them down on the sheet of paper. I start to read them off and Andy gives me this, we already talked about that response, next, he’d say. When I pushed that I wanted to hear the answer from the doctor, not the version that he would tell me later, he hung up on me. Like, legit hung up on me! I was LIVID! How could he take the call that I requested with the doctor and not give me the opportunity to ask ANY of the questions I wanted to ask! I was so pissed off at him, I took all his shitty cancer paperwork that he just spent 15 mins organizing in a leather binder prior to leaving the house, and literally threw it at the front door.

It was not my proudest moment.

The papers went flying everywhere. I sat there fuming and agonizing about the fact that I was not going to have my conversation with the doctor. I was not going to hear the doctor answer my questions and ask any applicable follow up questions that may arise because of the answers given. I wasn’t going to have that chance. And I was furious.

When he got home we had a pretty big argument. As I said, it wasn’t my proudest moment, it wasn’t our proudest moment as a married couple, but I felt completely brushed aside by him, like the questions I had were so unimportant that he just shrugged them off and didn’t care what I thought. That is what hurt the most.

Honestly, that’s kind of how I feel now. Sure, maybe the conversation wasn’t important, but damnit, I deserve to be included. Hell, I know more about his diagnosis and what the plan is and how to articulate all of that more than he does! He still can’t even remember the name of his type of cancer. Mu-ci-nous Adeno-car-ci-noma. I get it. It’s a big ugly word, but come on. Take some ownership in this. With everything I’ve given up for him, HAPPILY, I am not saying I have not happily done everything I’ve done for him, I have, and I will continue to, but a little thoughtfulness would be appreciated. At least to have enough respect to let me hear a conversation that interests me about the man that I love more than anything on this planet.

I get it. This is not really a big deal. You’re probably sitting there thinking that he has the right to have a conversation about his medical condition with someone in private, and you’d be right to think that. I mean, to be honest, after I get a bit of distance from this incident, I probably will too, it’s just right now, in this moment, I feel slighted. Like I have a right to the same information too. We are, after all, in this together, so what he knows, I know, what I know, he knows.

Listen. It’s HARD AF to be a caregiver. Here I am, basically waiting on him hand and foot, catering to his every whim —

Honey, our ice maker isn’t making ice fast enough, can you go out and get a bag from the store? Honey, a couple weeks ago I dropped off our basement TV at a TV repair place 30 miles away, and now its ready so I need you to go and pick it up. Honey, can you refill my water? Honey, can you hand me my pills? Honey, I dropped my phone on the floor right next to me and I need you to pick it up.

You get the picture. It’s exhausting, and a little thank you would go a LONG way. So, when a call comes in regarding his care, the control freak in me screams to be included in that conversation! It’s literally the only control I can have in this whole situation and he just rips that away from me! Andy and I have very different personalities which compliment eachother so well, most of the time, but sometimes, we struggle with communication because his needs are VASTLY different than mine. And him, relying on me for basically everything at this point, just exacerbates that difference and its hard. I am, admittedly, Type A. Type A AF. Complete control freak, need to plan, need to have a strategy, need to know what comes next. Andy, however, I wouldn’t even classify as Type C, he is so relaxed and laid back about everything, its infuriating … and delightful all at the same time.

Shit Lottery Winner!

Congratulations!! You just won the shit lottery! Only this lottery is different because every human is forced to play, even though you can’t purchase a ticket, and no one wants to win.

This is the lottery that no one gets excluded from and fate is the only differentiator in who wins and who loses. It’s the only lottery that, in fact, if you win, you lose.

Sounds like fun?!

No.

The shit lottery is something, sadly, I’m very familiar with in my life. I’ve had friends who’ve been winners in this lottery and I’ve seen first hand the damage that ensues once your ticket is drawn. Some have had positive long term outcomes, some have been devastating, but either way, you lose. Not just loss of life, not in every case, but loss of time, money, relationship strength, energy, physical health, mental health, life balance, everything. Everything is thrown off.

Andy came home from the hospital on Saturday evening, 2 days ago. He was miserable at the hospital, they wouldn’t let him rest, they would come in and check vitals and poke and prod him every 2 hours during the night, so he wasn’t sleeping. Everything was looking fine, so they agreed to discharge him. This was really good news! A hospital stay that I had anticipated being 10+ days long only ended up being 6 days! I mean, that is a HUGE win for us and is a testament to how strong my husband is, and how much willingness we have to fight this thing! He’s on a shit ton of meds, oxy10, tylenol, ibuprofen, Gabapentin nerve blocker, lidocaine strips, a Lovenox shot once a day, ice and a velcro binding girdle-thing to hold him in. He has also been carrying around a pillow which he hugs in front of his body to help him feel more secure with the incision. He says he feel like his guts are falling out if he doesnt hug this pillow, so he’s happy to walk around with his friend, “Peppa Pillow” for life if he has to, lol In addition to that, his movement is very limited. He isn’t supposed to lift anything heavier than a gallon of milk and it takes him a good 2 mins to stand up from a laying or sitting position. Our 4 year old and the dog are the most unphased by all of this, lol They still want him to play and wrestle and that is hard for them to understand. We told the 4 year old that daddy has an ouchie on his tummy and the he has to rest and walk very slowly for a couple weeks. We went over the places that he could hug and touch daddy, like his head was a good place to give lots of hugs, and his arms and hands were good to touch and hug too. We’re trying our best to put all this really complicated adult stuff into terms that will resonate with him and that he’ll understand. I hope we’re doing the right thing!? Where is that damn cancer user manual when you need it!? For right now, tho, it’s lots of sleep for Andy and (ughhh) more episodes of The Office than one human should be allowed to view, lol But I imagine he’ll be doing more sleeping than watching TV in the short term.

So, what am I worried about now.

Now that he’s home and we’re on the mend, I can’t STAND not knowing what is next. Everywhere I look I have people telling me that their specialist told them that they’d just have to “wait and see” at another scan in 6 months. Well, that is just not an acceptable answer. Here’s what we know about this cancer, its aggressive. It spread to 2 organs in 4 weeks, and then to another 2 organs and 1 additional location, his pelvis, in 10 days. So, this whole idea of, Well, lets just wait and see, nope, I’m not interested in that strategy. Not for us, so let’s come up with a better, more proactive plan. I need to measure. I need something to measure against. Now, I, admittedly, am not an oncologist, or a specialist or even a doctor of any sort, but I am a smart individual and I am using all my deductive reason skills and project management skills, and any other skills that I have picked up over the course of my adult life, and have decided to approach this in the only way I know how. Measurable outcomes. Outcomes that I can track against, numbers, patterns, thickness, scans, anything that will give me some sort of measuring stick so I know where we stand at each re-measurement. I mean, I don’t feel like this is asking too much, right? When you go into a car repair shop because your tire popped, they don’t just say, Welp, why don’t you just go about using this car as you normally would and come back in 6 months so we can re-evaluate the situation. That sounds ridiculous, right? I mean, why is having cancer any different? That’s basically what they might be telling my husband to do! Here’s what I think, we know the problem, right? So lets fix this shit and be done with it! It could get 1000 times WORSE by waiting 6 months, so lets figure out a way to be proactive and get ahead of the problem before it gets out of control.

Maybe I’m projecting. After all, we technically haven’t met with our oncologist yet, so she may very well tell me that the next step is to get a scan (or bloodwork, or something) so we have a baseline knowledge of where we are before starting chemo, then, we can see where we end up. I guess I’m just nervous in reading what others experiences have been and doctors overwhelmingly taking this “wait and see” approach, it makes me nervous that we’ll be told the same. And, like I said, we’re not interested in that. However, we really are at the mercy of the doctors here. I can’t FORCE them to order tests or scans, I can’t force them to be more aggressive with treatment, I can’t force them to care as much as I do about my husband and do the things I feel are necessary. And that is terrifying.

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.

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.