$409,220.50

Yep. $409,220.50 USD. That is how much Andy’s care over the course of 2019 would have cost us if we didn’t have insurance. It is completely insane to think about. I remember being SO mad at our decision to go for the high deductible plan through work back when all this started. It seemed like such an awful decision at the time, but, looking back? Oh man. I am SO grateful for our insurance! Sure. We’re still fighting with them and filing appeals about the $40k number up there under “Patient Responsibility,” and, sure, $40k is a HUGE number. But you know what an even larger number is? $409k!! Holy hell! This year, we put my husband on his own insurance plan. The deductible is only $2k and the out of pocket max is only $3500. This is MUSIC to my ears as we continue to struggle with the $12.5k out of pocket max from last year — not counting the co-pays for chemo, specialists visits, oncologist visits, ER visits … I could go on, but I won’t. I know we’re blessed, and Andy is doing so well!

But as we closed out 2019, I started wondering what 2020 was going to bring us? I’ve been so focused on getting through all this awful chemo that I had not really considered what would happen after its all over. From then on out, it’s basically a waiting game.

I hate waiting.

We are supposed to just move on. Go about living our lives as if everything is fine and like none of this ever happened. And as enticing as that seems, as much as I long for some normalcy and schedules that aren’t constantly in flux — how does one just forget that all this happened? Andy will have a CT scan every 3 months for the first 2 years after treatment and his tumor markers will be checked too. But I don’t trust scans as far as I can throw them and Andy’s tumor markers have basically always been relatively normal, even when the cancer was raging in his body … the tumor markers remained normal. Speaking of tumor markers, Andy’s were recently checked and they came back, not surprisingly, normal.

CEA: 1.4 (same as last time, normal is 3 or below)
CA 125: 8.8 (this is 1pt lower than last time, normal is 30 or below)

I’m afraid that there is nothing that we’ll be able use as a good diagnostic tool for this cancer as it does not trigger any of the “normal” ways to check for recurrence. Since the tumors themselves produce a clear mucus substance (which is INVISIBLE, because its CLEAR) it cannot be seen on a scans, and blood work for tumor markers is unreliable at best. I’ve had this doubt from the very get-go with this journey, and now here we are, and it’s all becoming real.

But I have to breathe.

Maybe it will be good to just forget all this happened for a bit, I mean, at least until our first scan. lol Maybe we’ll get lucky (lucky … not the right word here, but) and Andy will need surgery for a bowel obstruction once a year, and we’ll be able to get the surgeons confirmation that the cancer is not back. Honestly, that is the only way I will actually believe that he is truly in remission. And we know, as of this moment, that the cancer is NOT there, so after these final 4 chemo sessions, he will be in remission! That is a HUGE relief and an amazing testament to my husbands resilience and strength. To OUR resilience and strength as a couple in that we did not kill each other during this whole ordeal! But I can’t be mad at it. My husband and I were talking the other day and he said something that caught me a bit off guard. He said that he thought this cancer actually brought us closer together. I stood there, looking puzzled when he said that. I mean, nothing like a good life or death situation to really force you to prioritize your relationship over everything else. So I sat back and really thought about it. And in the grand scheme of things, in between our massive drop down, blow out arguments and constant bickering, we did learn a lot about each other. Things we likely would never have learned any other way. We learned a lot about ourselves and how much we could withstand and handle. We were forced to analyze and dive deeper into our relationship than either of us probably ever wanted to, and while this surfaced quite a few problems that were deeply hidden, I am so glad they were uncovered. It forced us to work through them and understand the others perspective and try to accept what we couldn’t understand (I still have problems with this!! lol) even if we didn’t like it. And now that we are near the end of this, I am actually grateful for the journey.

My husband and I are closer today than we might ever have been. I feel proud of him and his accomplishments, not just with this cancer fight, but with his everyday life! I want to enthusiastically encourage him to do the things he has planned this summer, such as getting his strength back and being more mindful of his time with family. I am, after all, his biggest cheerleader and I will always be there for him for as long as he’ll have me and accept my help.

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 🙂

No Lymphatic Spread

Today, for the first time since this whole nightmare started, I feel hopeful! We had our follow up meeting with the surgeon who did the HIPEC today. He is extremely happy with Andy’s progress and his incision looks really good! He said that all the lymph nodes that were removed, about 20 of them, came back negative for the cancer. HUGE. SIGH.

Breathe. I can breathe!

I am so relieved. I mean, SO RELIEVED! Andy was relieved too. Through all of this, I have been critical of his lack of emotion. He is just a stoic human, that is who he is. But the few times that he has shown me some sign of emotion, it has meant EVERYTHING! Honestly, I can count the times on one hand. 1: The night he told me about the cancer. We both cried, he was clearly upset. It was the first time he had even spoken the word out loud and it was terrifying. 2: The day of the colonoscopy, when the doctor said that she saw no sign of disease. He fiercely grabbed my hand, and with some short breaths and a winced face, he said in a squeaky voice, Oh thank God! As if he could have broken out immediately into tears, but he didnt. He stopped just short, and we sunk into a deep hug instead. 3: Today at the doctors office. He asked about the lymph nodes, and although we assumed that no news was good news, we still had to hear the answer. When the doctor said that the results were negative, Andy grabbed my hand once again, and squeezed it so tightly. I could hear an audible sigh of relief coming from his voice. We were both so relieved.

The fact that I wear my heart on my sleeve shouldn’t come as a surprise to anyone. When my emotions hit, I often overindulge them, both sadness and happiness. I act quickly, often putting my foot in my mouth or saying something sans a filter and regretting it later. This probably happens more than I would like to admit. I’ve lost long time friendships because of this and I’ve damaged relationships. I’m brash, I can be a bit overbearing (especially if I’ve had a drink or 2) and I tend to overreact. But Andy grounds me and puts me in my place, if need be. Its a dynamic that cannot be duplicated and although, as you know, the things he does sometimes infuriate me beyond belief, they are also comforting in a way that I don’t even understand.

At the doctors office, we sat there talking with the doctor and the assistant for a good 15 mins. We asked our questions and when I asked him if he were in our shoes, and knowing what he had seen in our case, what would he be most worried about, he said the disease on the small intestine. This is good to know. He said that spread to the small intestine is often difficult to treat because you can’t just remove the small intestine. He said that he definitely recommends we do the systemic chemotherapy and we not put that off.

Ok, noted. We definitely will not be putting that off. Whichever treatment course we decide on will begin in early July. We meet with the specialists the last week of June, make our decision and then move forward with the regimen. That’s our plan. It feels good to have some structure back in my life. All this waiting and loosey goosey tentative-ness is enough to drive me mad. The dr said that they would do an MRI scan (which he recommended over the CT because there is less radiation involved … which, if you have cancer, ya know, extra radiation is not really a good thing) at around the 2 month mark, before chemotherapy starts. This scan will sort of serve as the baseline for all new scans to be compared against. Even though, he said, the scan will show “thickening” because of the scar tissue and the healing that is still in progress, it will be better than nothing. I asked about the frequency of collection of the CEA and tumor markers, and he said they’d do those every 3 months. Tho he did caution that because Andy’s was already low, they might not be a good indicator of recurrence. He said that if they started out high and then got low after the surgery, that would be one thing, but because his CEA was already relatively low, it might not be the best predictive gauge. Ok, fine. But I still want it tested.

We made another follow-up appt with Dr. Glasgow, our surgeon, for 6 months. He said that he wanted to stick with our case and will be consulting with our oncologist, Dr. Rigden, who will run point for the near term. I don’t love Dr. Rigden, but I do love Dr. Glasgow, and if he trusts her, so do I.

I have learned that positivity will get you so far with the cancer journey, but having the facts and speaking with the people who hold your life, literally, in their hands, is essential. We still have yet to hear from the Sloan Kettering program, so that’s annoying, but I am hoping we hear from them today so I can start getting flights and lodging booked for our trip. That’s the last piece of this puzzle I need to get organized, then I will feel absolutely whole.

In A Holding Pattern

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

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

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

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

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

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

Face the Facts

Thursday, April 11, 2019 08:15am That’s when we got the confirmation. It was Mucinous Adenocarcinoma of the Appendix. Our appt with Dr. Glasgow was short. I had no idea what questions to ask, I had no clue what the diagnosis meant or what our next step should be. Unsure of what to do or what to ask, I opened my laptop and frantically typed, word for word, what was being said during the meeting as if I were some manic court reporter who’s only job was to document every syllable. I knew neither one of us would remember what was being talked about and I definitely knew that I would want to know at some point, so I typed. Its all I could do.

We were given another surgery date, 2 weeks away, and a series of tests that needed to happen prior to that surgery. We were told that we had a Plan A and a Plan B for the surgery. Plan A consisted of a right colectomy, in which they would take out the lower quadrant of his colon (which contained the closest lymph nodes to the tumor) to rule out lymphatic spread, and also do a bit of an exploratory effort while they were in there to make sure it had not spread to any other visible areas. Plan B was in case they got in there and saw that it had spread to other areas. Plan B consisted of an extremely invasive, extremely long surgery in which a technique called HIPEC would be used. But we didnt worry too much about Plan B since we were sure that everything was fine and this was all going to be done and over with quickly. So fully implementing Plan A was really the only option we had considered since the dr who removed Andy’s appendix noted in all the charts that NO perineural invasion was identified — meaning, he had not seen evidence of spread at the time of his appendectomy, and that was only a week ago. We were confident that all this was just preventative and everything would be fine.

Meanwhile, I continued to learn as much as I could about this diagnosis. I found (and purchased) research papers from academic websites like The American Society of Colon & Rectal Surgeons and the US National Library of Medicine and The National Institutes of Health, I searched through photos on Google to see what this little shitty cancer looked like, I read article after article, I joined facebook groups for survivors and those who were in a caretaker role, I asked questions about things I had never thought I would need to know about in my life. I NEEDED to know what I was facing, I had to be informed. Knowledge is power, and it became my coping mechanism. I knew that I would want to ask questions, but I needed the information to even formulate the questions that I wanted to ask. I needed to know what was a good answer and what was a bad answer, I needed to understand what different scores meant and how it related to overall survival rates and what the percentages were for each factor. Here are my husbands scores:

CEA tumor marker: 3.2 (collected on 4/11)
CA19-9 tumor marker: not tested
CA125 tumor marker: not tested
Histologic Grade: G2 moderately differentiated (collected on 3/29) High-grade
Histologic Type: Mucinous adenocarcinoma
Primary Tumor: pT4a (collected on 3/29) with serosal implants present
Tumor size: Cannot be determined. Scattered foci over 9cm, spanning the length of the appendix, without dominant mass
CC score: unknown at this time (will be collected during surgery)
PCI score: 4-5 (estimated on 3/29)

So what to do now? I kept reading. I read everything (with google open so I could google every word or phrase or acronym for which I didnt know the meaning … and that was A LOT.) And by the time I was done, I felt like an encyclopedia for this ridiculous cancer. I could spew survival rates for each type, good thing we don’t have the one with the signet cells, I’d tell myself to try to help the 38% survival rate, if metastasized, for what he had look just a tinsy bit better. I combed through document after document to try and find a better outlook, but I couldn’t. So this HAD to be something we nipped in the bud now. Plan A was a go, and we would take all the steps we needed to prepare as best we could for the surgery.