Our Ring The Bell

March 13, 2020

The day this all comes to a close. At least for now. The day we get to celebrate the end of chemo and the end to this awful nightmare that I legitimately never thought would end. My husband got his chemo-sabe box off on March 11th — he didn’t know I was planning a little coup with 15-20 of our closest friends and family to help him celebrate his ring-the-bell! He told me he wanted something small, so I encouraged him to invite his 2 moms and his Aunt who have all supported us through this difficult time in our lives. Meanwhile, I was scheming to hold a much bigger celebration for this banner day!

The problem? He didn’t know when he wanted to ring the bell.

Why was this a problem? lol Well … YOU try coordinating 15-20 people for a rendezvous on a day that is completely unknown at a time that is uncertain, at best, for a celebration that you want to keep a secret!! You might have a tough time completing that task too! But me? NOPE! I was bound and determined to make this work and have as many people as I could there to help us celebrate, no matter how impossible it might have seemed!

I planted the seed early. The weekend before my husband was due to go in for his last chemo cycle, I casually asked about ringing the bell. Since we have to take home the chemo-sabe box, the Monday we go in to get the chemo infusion doesn’t really seem right to ring the bell since he would, essentially, just be starting the bulk of his chemo, not completing it. But he feels SO MUCH BETTER on that Monday than he does on that Wednesday, when we go back to get the box removed, so I wanted to be sure he kept that in mind. When we got into the discussion, he mentioned that he had thought about going back the Monday after his chemo week so he would be feeling good and he could really enjoy the ringing of the bell. While to me, this seemed silly, I mean, why on God’s green earth would be want to willingly go back to the chemo center after all this was said and done???! I had no idea, but I couldn’t really voice my opinion here, it was his decision, it was his moment, it was all about him. Truly it was. So I happily agreed to his plan. The Monday after his chemo week we would go back and ring the bell.

I immediately sent a huge update to a massive group text I had already concocted:

UPDATE on Andys ring the bell. We talked over dinner last night and he said that he feels so awful both on the Monday of chemo, when he comes home with the pump, and on Wednesday, when he goes back to get it removed, that he’d like NOT to ring the bell either of those days and go back to the chemo center the following Monday and do the ring the bell at that time. Bottom line, this is GOOD NEWS! It will allow me to let you guys know well in advance a day and time! AND we can plan a lunch or something afterwards.

And we all rejoiced in this news! Friends took off work to be there, the day was on a “day off” for quite a few of our family and friends who do shift-work, it was all working out great! This made me SOOOO happy!

So, the day came, we went in to his chemo appt and our fren-imy, the oncologist, decided that because of the progression of the neuropathy, they would remove the oxaliplatin piece of his regimen for this last round. Not that this was a huge surprise to me, I was pretty prepared for this. The bulk of people who go through this FOLFOX regimen often only stay on the oxaliplatin for 9, maybe 10 rounds, so the fact that my husband had stuck it out to round 11 was impressive. But it had taken a tole on his body. His neuropathy had gotten so bad, he applied for, and received, a handicapped placard for his car. I mean that is BIG stuff when you’re 39 and have a handicapped sticker!! So I was actually pretty relieved when she recommended they forgo that drug this time. But here’s what I didn’t know — how would that affect him? Would this round be better because he was not getting that? Would it be worse? The one thing I knew for sure is that it was going to be shorter, which I was SO excited about! Instead of sitting in the chemo center for 4-5 hours, we went back, they gave my husband some anti-nausea meds and hooked him up to the box and we went home! We were out of there in an hour flat! It was glorious!

The entire cycle, my husband was okay, he wasn’t awesome, but he was okay. He wasn’t nearly as exhausted, his nausea was pretty well controlled and the diarrhea? Well, can’t ask for perfect, can you? lol That was the normal amount, but because he was up and walking around and at least eating one meal per day, he had much more energy! I could already tell that things were looking up for him and this made me so happy! This last cycle was the easiest cycle he had ever had, and I was so thankful for that. So Wednesday came, and he didn’t want to go back to the chemo center. We had an extra disconnect kit at home, so I ended up disconnecting the chemo box myself and we avoided going back that day.

The next day, he was feeling so well, he decided that he didn’t want to wait to do the ring the bell on Monday, he wanted to go TOMORROW, on Friday …

WHAAAATTT??!! Oh man! I attempted to talk him out of it, trying to talk him into doing it on Monday since I KNEW we had a boat load of people who had planned on that Monday! But, just like my husband, he had made up his mind, and I wasn’t going to put up too much of a fight about this one. He wanted to do it on Friday, so all I could do was let everyone know. I immediately sent out another text to the group:

Ok, folks — well, classic Andy, he has decided to ring-the-bell TOMORROW (instead of Monday) at noon!! SO, if you’re avail tomorrow at noon — that’s when this is happening. Sorry.

I mean, what else could I say? I knew the crowd would be smaller, but I was hoping the bulk of the people would be able to make it.

And I was right! The day was glorious! I had pulled it off! We got out of the car and as we were walking into the chemo center, there they were. Everyone was standing in the waiting room! They all stood up and clapped as we entered the area! It was astounding to see everyone in the same space, all cheering on our amazing warrior! Andy was truly surprised! He told me it was the first time in his life that anyone had ever truly surprised him! I am so glad I was able to give him this! He was thrilled to see everyone there!

We all caravaned back to the area where the bell was, we piled into the hallway and RING! RING! RING! We all watched him ring the bell! At that moment, it’s as though all the struggles we went through, all the arguments and fights and tears and anguish, it was immediately all worth it.

The Day I Never Thought Would Come

Believe it or not, today marks my husbands LAST chemo treatment! We were SURE he would not qualify after going 2 weeks last round with his ANC being too low. But, we went in this morning anyway, certain we would be turning around and walking right back out within 30 mins, and low and behold! A Monday miracle! His ANC was at 1.9! That is the highest its been since this whole nightmare began, almost exactly, one year ago this month! He qualified! Tho his nephropathy has worsened, such that my my husband is having some balance issues … not that he told me this prior to walking into the chemo center and speaking with our oncologist, lol (Some things will never change, sigh) But when she asked about his nephropathy, he said it had gotten significantly worse and he was not only having trouble holding on to things with his fingers and buttoning buttons, but his feet were tingly almost constantly and its affecting his balance. He has not fallen, thank God, but they certainly did not want it to get any worse, so they completely removed the oxaliplatin from his regimen today and all they had to do was hook him up to the pump and he was ready to go back home! It was the SHORTEST chemo treatment ever! This was a welcomed surprise and it’s so close to the end, I actually don’t even care if the efficacy is lowered at all because of the dose reduction! I am SO happy to be SO CLOSE to the end of all this!

We were both clearly happy, giddy, even, at the news that he COULD get the treatment today and we WERE, in fact, only hours away from the end! It’s unbelievable actually. He will go back in on Wednesday to get the chemo-sabe box removed and then … THEN, he will truly be done! We will truly be free!

Wow. I never thought we would get here.

This entire past year has been so awful, so life-changingly miserable, that all I want to do now is just exist. The kind of existence that doesn’t know what I know about all this cancer stuff. The kind of existence that doesn’t constantly consider life or death situations. The kind of existence that finds it completely normal and sane to see my husband alive and well, and in my family’s future. I just want that existence for a bit.

So now I look to the CELEBRATION! Only recently have Andy and I talked about taking a small trip after all this is over with. No where extravagant, just a road trip to Kansas City (since we live in St. Louis, KC is only about a 3.5 hour car ride away.) But we didn’t want to jinx anything and all this has been SO unpredictable (to say the least) I think we both thought that if we even spoke the words, even mentioned “the end” that it would somehow not happen. Ridiculous probably, but I think we were both happy to sort of turn a blind eye and understand that we would just see it when we got here. Well, here it is! It was SO rewarding to hear my husband talking about it! At first he told me that he was taking an entire month off work once chemo was complete, lol While I knew that was a bit of an over exaggeration, I was SO happy to hear that he was SO happy to be done with this too! It’s no mystery that I’ve been in some very, very dark places over the course of the past year, that we’ve been in some very, very dark places with our relationship. I know we are not through the problems yet, but I do feel like we can finally turn a page. Things aren’t going to magically get better once the chemo is over, I know this, but I do think that without the weight of chemo on our (my) shoulders, I can finally relax for a hot minute and take a step back without being so damn intense and fatalistic all the time!

Maybe I can find the old me!? The one who was nothing but puddles of constant positivity and happy energy. The one who wasn’t angry all the time or who didn’t blow up at the slightest hint of change when some expectation was not met. The one who is thankful and considerate and shows those emotions in appropriate and caring ways. The one who is not resentful and can handle her kids for more than an hour at a time without feeling like I need to bring in reinforcements. I really hope that person is not gone. I miss her. I want to be her again.

The other day I snapped this picture of these two clowns, lol The sun was shining in through the windows along the back wall of our house and it illuminated the kitchen. I caught this pic just before the sun went behind a cloud and when I took it, I stood there looking at it and I thought, my heart! This boy loves is daddy so much, it makes my entire heart want to burst!

So now we celebrate! The week we’re planning to go is intentional. All this began a year ago, that random Thursday in late March when my husband had his appendix out. It was March 28, and he found out he had cancer a week later, on April 4th. We are planning our trip for March 30-April 5. It will be exactly a year since this nightmare began. I hope to have a very real and open conversation with my husband on our trip. I want to talk about the past year and how we’ve grown, and what we’ve learned. But most of all, I want to find our happiness again! That is my hope for the future.

What’s next?

Good question. My husband has his first follow-up CT scan 4 weeks from today. From there, he’ll have scans every 3-6 months for the next 2 years, then it will go to once a year until year 5. Of course, that is all assuming he does not have any sort of recurrence. I am scared of this reality, but I just can’t let my mind go there right now. Right now I am happy to sit in the moment and just be. We have made it this far, we will make it the rest of the way too.

And So It Begins. Again.

Sometimes I feel like a broken record. My husband has diarrhea. He’s in bed for 5 days straight. I have to do everything by myself. I don’t like this. blah, blah, blah

Rise. Repeat.

I’ve just stopped complaining because what good does it do? lol I doubt my friends want to hear my sob story about how my poor husband is on chemo (again) and I’m struggling with it (again) because he’s so tired (again) and I’m so lonely (again) and … you get the picture. Would you want to sit through that conversation every other week with me? No. No you wouldn’t. It sucks not having anything else to talk about. I hate how this consumes my mind and my conversations. Even when I tell myself, I’m not going to talk about cancer or chemo or any of that tonight, it just creeps into my mouth and the words come out. But I DREAD it. Going in for the infusion, seeing my husband walk around attached to a box pumping poison into his body every 48 seconds for 3 days straight. Getting the box disconnected, like he’s physically wired in, like an old school phone that needs to be disconnected when the service is changed. Seeing him in bed for days on end, leaving me on my own to do everything. All of is just sucks. It sucks for him, it sucks for me, it sucks for the kids, it sucks for our jobs, it sucks for everyone. And I KNOW it could suck A LOT worse! I mean, even with all of this, I feel like we still have it pretty good! With all the support we have and the fact that we’re still young-ish to bounce back from this complete financial blow, I mean, it could be WAAAAY worse. But in the thick of it, it just sucks.

So my husband went in for chemo yesterday, as planned, on Dec 26th. He did get the appointment, lol and asked me to go along with him. Almost immediately upon entering the chemo center, he started to feel sleepy. He hadn’t had ANY chemo yet, and he was already exhausted!? Ughhh This was not promising behavior. The infusion took way longer than it normally does, they needed to take another blood sample and we had to wait to get the results back before they could even begin any of his pre-meds. His ANC was right at 1,000, the minimum threshold for eligibility, so he qualified, but barely. He did gain a few pounds, up to 193, so that was good to see! He has started to feel the neuropothy pretty steadily now and it is starting to concern him as he can sort of feel tingliness in his, ahem, you know, manhood. So he wants to be sure to nip this problem in the bud before it becomes something that is permanent — tho I’m not sure there is anything we can do at this point to stop it. It’s only going to get worse. We made sure to tell the oncologist about this and she agreed that this was not good and decided to lower the dosage by 25% to try to curb some of the permanent damage. We’ll see if that does anything.

So we get into the chemo treatment room and, my husband, bless his heart, he immediately lays down and starts sleeping. He basically sleeps for the entire 8 hours we’re there. (rolls eyes) When its finally time to leave, we get home and, mind you, all the kids are home because its Christmas break, and he empties the dishwasher then heads upstairs to bed. That was the last time we saw him that day.

He woke up this morning around 7:30am (after sleeping for 14 hours) got dressed and went into work! face-palm

I just don’t understand it sometimes. It sort of pisses me off because I feel like he wouldn’t be so exhausted these first few days while he’s on the chemo box if he didn’t stay up drinking and smoking until the wee hours of the morning the 2 days-ish prior to going in for chemo. I’m getting the short end of the stick here and it sucks. You know what I’d like? I’d like them to check his blood alcohol level when he goes in for his chemo treatment, I’m sure that would be an interesting find. I think that we can all agree that starting chemo in that condition is not ideal, and I’m pretty sure that’s what has changed and that is why he’s so sleepy these first few days. He never used to get loaded the day before chemo, now he does. Ughhh But who am I to say anything to him? He won’t listen to me. I digress.

So I’m hoping for the best with this round. But I feel like we are right on schedule for the same 5 month timeline that we had for the first 6 rounds. Note that all 12 rounds were SUPPOSED to be completed in a 6 month time frame — but here we are, 6 months in, and only 8 rounds completed. We started chemo, round 1, on July 2, 2019. We started chemo, round 7, on Dec 2, 2019. Which means it took my husband 5 months to complete 6 rounds. I have no reason to believe these next 6 rounds will look any different. Figure in 2-3 bowel obstructions, a surgery, maybe an illness that causes a hospital stay and at least 2 times where we’ll have to wait an extra week due to his ANC levels being too low, and there you have it, on track for another 5 months of this.

Lord help us all!!

Hello? ANC? You Have a Problem

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

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

And there is nothing we can do about it.

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

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

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

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

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

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

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

Whatever, that’s not my life now.

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

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

Have we talked more about the incident? No.

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

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

The Fight

After the failed attempt at getting chemo last week, round 3 (take 2) this week was successfully administered. As a very good friend and neighbor pointed out to me today, we are 1/4 of the way done! Wow! Great perspective, I told her, and it was very welcomed today as I’m struggling a bit through some extra sensitive emotions.

My grandmother on my mom’s side died a few days ago. She was very old and died not because of some terrible disease that she had struggled with for years, not because of infection or a fall or some awful tragedy. She died because it was her time. She was surrounded by all her children in a quiet peaceful room. She hung on for way longer than the doctors thought she would, as my mom put it, She’s a tough old bird! And she was. She was loved and will be missed incredibly, she lived a good long time. But all this got me thinking, Shouldn’t we all be so lucky? To die without pain, at an old age, after a good run at life, surrounded by those we love. Everyone deserves that.

This week has been a rough one. My sons 5th birthday party was such a success, but I don’t know if I can adequately describe the fight my husband and I got into the night before the party. I admit it, my emotions run high during holidays and birthdays. Add this on top of the cancer treatment and the passiveness I’ve taken on over the past 3-4 weeks in an attempt to keep everything very calm and not create any undue stress for my husband. I hit an inflection point and I knew I was going to blow my lid. Not just that, but the fact that I still can’t get my husband to talk to me about any of this! I am still convinced he is in deep denial, and as I’m trying to work through this, he remains unphased and completely disregards any real or raw emotions I try to bring to him. Do you know how unbearably maddening it is to have the one person who understands exactly what you’re going through just up and refuse to talk about it? He makes me feel like I’m a complete lunatic! While he remains calm, joyful even, as he is making appointments for chemotherapy (poison) and scheduling all this shit that NOONE should be happy about. He just happily whistles a little tune and carries on like everything is fucking fine. Meanwhile, I am trying my best to maintain normalcy and pretend (for him) like things are fine. Well things are not fucking fine. And I just couldn’t take it any more. So that night, the night before the party, I let it all out. All the dirty laundry that had been piling up for weeks, I was airing it ALL out. The vitamins that he was refusing to take, but was blissfully still smoking cigarettes. (While on chemotherapy. For cancer.) The fact that he adamantly denies he’s in denial about all this. (Isn’t that, like, the most classic symptom of denial?) The fact that he WON’T talk to me or listen to me about any of my emotions. He is SO disconnected that when I attempt to have an open and honest conversation with him, he tells me I’m making it all about me, and gets up, and literally walks out of the room. It makes me feel completely disregarded and insignificant and like an absolute basket case because I NEED to talk about this! Then I’m left second guessing myself, like, Am I making this all about me? I mean, yes, I am an asshole some of the time, but I feel like I’ve truly turned a corner in that regard. And, while I admit, I am the one that needs to talk about this, and he might need something different. Even so, this is definitely not all about me. But it is also not only about him.

It was late at night when this all erupted. In that moment, I was literally fuming. We had actually had a pretty calm conversation earlier in the day as I could feel I was almost at my boiling point. We sat down across from eachother, he talked, I cried, he attempted to listen, and when it was all said and done, we had a list of to-do’s. I had had a conversation with a friend a few weekends back and she mentioned something to me about asking him how I could help him. This all came about because I beyond frustrated that everything I was doing in an attempt to be helpful and useful was being met with resistance or was being thrown by the wayside in some form. So my friend asked me if I had asked him how I could help. I had not, but I thought it was a good enough idea and decided I had nothing to lose. So I asked, and out of that came this “to-do” list, so to speak. It consisted of him agreeing to try to be more aware of when I was struggling and taking initiative to offer me reassurance during those times (for example, him seeing me struggle, coming over to me and saying something like, I see that you’re struggling, how can I help?) and me, agreeing to ask more direct questions on topics or feelings I’d like to discuss (for example, me asking things like, If you were to tell someone who was just diagnosed with cancer how chemotherapy felt, what would you say?) So now, although I have no background as an investigative journalist, I somehow have to become an expert at formulating the right questions and asking them at an appropriate time just to get my husband to tell me about how he is feeling. Ughhh Whatever. I was not happy with this setup. Just more of the mental load for me to shoulder. Why was it solely up to me to draw this out of my husband? Why couldn’t he just offer this up to me like some little glimmer of a normal reaction to a stage 4 cancer diagnosis? Nope, I don’t get that. That is not my life.

Yea, I was not happy with this setup. So, as we were running around getting the birthday cake and picking up last minute decorations for my sons 5th birthday party, it stirred in me. All I could think about was that he just gets to live his life like normal, and if I wanted any sort of connection with him about this, it was up to me to make that happen. I was furious! How could he do that to me! I have literally given up EVERYTHING to make him comfortable! All my energy, all my time, all my brain power, all my focus, every effort I put in to researching doctors and hospitals and vitamins and procedures and creating a log of medications and his reactions to each. The backseat that I’ve taken at my job, with my own children, with my friends. Literally EVERYTHING has been put on the back burner and all I ask is for a bit of real vulnerability from the one person who I love most in this world, the one who knows exactly what I’m going through! I couldn’t take it any more, I was completely done. It was ALL weighing on me.

And I let it out.

Have you ever heard the saying that no good conversation happens after 10pm? Its true. It was probably midnight, I was outside screaming at him in our backyard, likely with neighbors listening. I didn’t care. He was chain smoking cigarettes, and that was just the icing on this shit cake. I told him everything. All the things he didn’t want to hear. All the awful statistics that he refused to read or know about. I told him that the reason I was SO upset was because I didn’t want him to die. And I didn’t! I DON’T! That is the absolute truth! I told him that I didn’t want him to fall into the 62% statistic for those who are dead 5 years after this diagnosis. I told him that all these things I was doing, all the research, all the vitamins, was because I wanted him to LIVE! And he was taking all that and just throwing it out the door, and SMOKING on top of it. Which, if you don’t know, is AWFUL for anyone with cancer, not to mention those that are actively on chemotherapy. Srsly. I told him that he deserved to feel like crap after his chemotherapy treatment and I hoped he did. And I meant it.

And I felt awful.

Guess I am still an asshole after all. It was another one of those moments that I am not proud of. It was a hard night. Its been a hard week. This whole thing has been hard. We both said things that we regret, well, at least I know I said things I regret, we haven’t actually talked about that night. I have a feeling we’d both just rather forget it happened and move on. Sometimes sorry just isn’t enough.

So we got the chemo box off today, and right on schedule, my husband feels like crap. The diarrhea is back with a vengeance and his energy has completely tanked. At least when he’s so exhausted, he’s not on the toilet! There’s a bright spot, lol He’s had a bit more nauseousness this round, no actual puking yet, but he just feels queezy. That’s not fun. This is only round 3. I cannot believe we’re ONLY on round 3!! Why do I feel like time is just creeping along? I feel like we may NEVER get to the end at this pace! We might kill eachother before then.

Just kidding of course!

Chemo, Round 2. Take 2.

Last week was supposed to be Andy’s second round of chemo, but when we went in, his white blood cell count was too low. Fun fact: you have 5 different white blood cells that make up your white blood cell count, the one that is most important is the Neutrophil count. The Absolute Neutrophil count, or, ANC, to be exact. This is the one that makes up about 60% of your entire white blood cell count. So when that one falls off a cliff, the rest of them don’t really matter. A normal count is between 6.4-10.6. Prior to chemo, Andy’s was already on the low end of normal at 7.4, but when we went in for his chemo last week, it was at a dismal 0.4. The minimum threshold needed to administer chemotherapy is 1.0, so we were sent home and told to reschedule the chemo session for the following week. This was disappointing to say the least, but we tried to put a positive spin on it, rationalizing that it was a welcomed extra week “off” from the chemo. This was a lie, of course, but we were both happy to ignore the fact that this was likely a problem we were going to have to face over and over again. Dr. Galsgow totally called it when Andy was in the hospital with his bowel obstruction. He mentioned that his ANC was really really low. At the time, I was just taking note of it, but now, its a thing. Its a whole thing.

Lovely.

So home we went, happy to have a week off, frustrated that all we could do was wait. MORE waiting! Ughhh I hate waiting.

So we waited, and it was actually kind of nice! Things were pretty good that week, Andy felt great! We went out to dinner, Andy took our 4 year old to the movies and to the magic house, we got ice cream. It was just really nice! Everyone kept asking me if my husband was too weak to do things or if he was in some way bedridden because his white blood cell count was so low. No. That’s not how it works. But I can’t blame them, I would have thought the same thing if I were in their shoes and not mine. These little details are not really something anyone knows about, nor should they be. People think that just because he has cancer that he should be “sick” all the time. But, he’s not. He’s just, normal. He is taking it easy, yes, but that is moreso because of his ongoing tummy troubles which have little to do with the chemo whatsoever. –Okay, the chemo is exacerbating the tummy troubles, but the origin of the issue is not the chemo, it’s the right hemicolectomy. So we just carry a lifetime supply of Imodium AD and Lomotil on us at all times, lol It’s really not that big of a deal. It sucks, sure, but this is our new normal.

So we went in on Monday this week for round 2, take 2. Luckily, his white blood cell count had come up to 1.2 which is just above the threshold to allow them to administer the chemo, so he was able to receive treatment, but just barely. This makes me nervous. We really only have one choice if his ridiculous ANC doesn’t start to figure this shit out. Neupogen shots, a series of 3, given over 3 days. These shots stimulate the bone marrow to rapidly make white blood cells — you know what that feels like? The flu. Yep, side effects from the Neupogen shots are bone pain and flu like symptoms. Chills, aches, bone pain, cold sweats, low appetite, drowsiness, lethargy. You know, the fucking FLU. They give these to him on his off week. So here’s how this 2 week cycle would go:

Monday–> Chemo starts, chemo pump hooked up, steroid (feel good) shot
Tuesday–> Chemo pump in full force but otherwise a good day
Wednesday–> Chemo pump disconnected, IV fluids administered, starts to feel awful
Thursday –> In bed all day, feeling awful
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day
Monday–> First Neupogen shot, feels like he has the flu
Tuesday–> Second Neupogen shot, feels like he has the flu
Wednesday–> Third Neupogen shot, feels like he has the flu
Thursday–> Recovering from Neupogen shots, feels like he still has the flu
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day

rinse. repeat. for 20 weeks.

How’s that sound to you? How would you feel if you knew that in the next 6 months, you would only feel good, like a normal human should, for about 40 days? 40 days out of 6 month time frame. 30% of the time you’d feel okay, not even good, just okay, the other 70% would be awful. How would you feel if you knew that? It makes me nauseous that my husband will have to endure that just for the opportunity to be able to receive POISON. Maybe I’m being overly pessimistic here, maybe I’m just trying to deal with the crazy amount of loneliness that all this has thrust upon me! Because while my husband is going through all that, sleeping for days at a time — what am I doing? Life. That’s what. Back to school shopping, lunches for the kids, dealing with tantrums from the teenagers and the pre-schooler, chauffeuring the kids around, working full time, picking up, dropping off, cooking, drinking, spending most evenings watching TV. Alone. Doing all of this alone. Now, don’t get me wrong, I do love some alone time, but this cancer business? Its lonely work. And its not just that, its the fact that even my closest friends cant fill the void. And, to make it worse, there is nothing I can do to make it better. I can’t lay with my husband and cuddle (would you want to be cuddled with when you have the flu?) I can’t give him a pill to help him feel better, I can’t cook him something, I can’t say anything, I can’t do anything, I just have to sit back and watch him suffer. And with this round, he is suffering. His tummy troubles have been extreme this time. Nausea is starting to become an issue as well. The nephropathy has definitely reared its ugly head. For example, Tuesday morning, he went to take the trash bag out of the can in the kitchen, a silly, mundane everyday task, something he’s done every week for years because Tuesday is trash pick-up day, and I could see him struggling to get the bag out. He was trying to grip the bag and kept clinching his fingers up, pulling back, because it was painful to touch anything with his fingertips. So he was using the insides of his fingers and his knuckles to grip the bag, wrap the tie around it and pull it out of the can. I wanted to offer to help, but I also didn’t want to make a big deal out of it, knowing all this had to be weighing on him too. So I didn’t let him know that I saw the struggle. He managed, of course, but it was painful just watching him attempt this simple task. So there’s that, along with the cold sensitivity and bone pain, which he already has. Every time he bites into food, he gets this intense pain in his jaw and he has to chew very slowly. It lessens after the initial bite, but it’s still a struggle. The exhaustion, sure, but that actually has not been that bad this time, but the diarrhea, ughhh, the diarrhea! Obstructive, invasive, sudden, explosive, life altering, embarrassing, dehumanizing, stomach churning, uncontrollable diarrhea. It has worsened, and his stomach is constantly in some state of upset-ness. That’s the worst part. I would be okay with all of this if he wasn’t in pain, but he is, and that makes me feel absolutely awful. And helpless.

On the up side, he did go into work this morning. He is convinced that since he felt good on Friday for his first chemo round, he will always feel good on Fridays. Well, not necessarily, lol But I’m not going to be the one to tell him that! He lasted about a half day, and is at home now in bed. My husbands outlook on all of this amazes me! Its such a change of place for us, me, holding it down here in reality, while my husband is blissfully optimistic about everything! All our lives its been the opposite. Being a realist sucks, I hope it passes with this cancer situation.

So now I’m looking towards his next round of chemo. I am finding it so hard to be optimistic about his ANC numbers. The reality of the situation is he went from 7.4 to 0.4 in round 1. This round, he didn’t start at 7.4, he started at 1.2, so who knows how low his numbers will be when we go back?? This terrifies me! I do not want him to have to go through the Neupogen shots! Our oncologist did say that sometimes the body does find a way to regulate itself, so all hope is not lost. But I feel like with our luck? That is just not what will happen here. But who knows?

Chemo-Sabe

Monday was Andy’s first chemotherapy treatment. He was exactly 9 weeks post-op from his HIPEC procedure. For some reason 9 weeks ago LITERALLY feels like a lifetime right now! I, of course, was tossing and turning all night Sunday night, living in anxiety hell. My husband, on the other hand, cool as a cucumber, sawing logs all night long. Regardless of sleep or not, we were up bright and early to take our 4 year old to preschool before heading to our appt at 8am.

We get there and I can feel myself getting really nervous. My legs are twitching (more than they normally do, lol) my palms are sweaty, everything about me is uncomfortable. But at the same time, I’m also really eager to get this show on the road. The Friday before was Andys port installation. If you didn’t know, the chemotherapy (poison) is too strong to go through a normal vein in your arm, so they place what they call a “port” in your chest, and its basically direct access to your heart. Literally. They use an arterial vein, the superior vena cava, which feeds directly into the right atrium. So they place a tube in the vein and then put, what looks like, a cap under the skin. You can sort of see it sticking out in the pic, but its under the skin on the right side of his chest.

The port placement took me for a bit of a ride as everyone I spoke with kept telling me it was no big deal and he’d be in-and-out in a jiffy. Lo and behold, its this hour and a half long procedure in which he is put under with anesthesia. Its just more tubes and more surgery and more of this nightmare that I can’t seem to get ahead of. It just creeps up on me everywhere I go! That day I was completely overwhelmed! We went in for what we thought would be a small procedure. We honestly thought we’d be in and out in an hour. What we got was this long, drawn out, 4 hour ordeal that I was just NOT prepared for. I blame myself for my under-preparedness. Its just literally EVERYONE I spoke with told me that it was no big deal, so I went into it thinking it was no big deal. Well, it was a big deal. I should have done some research. Lesson learned. It’s just I HATE continually seeing my husband in this position. Hooked up to tubes, knocked out from drugs, vulnerable, barely lucid. It’s too much for me to bear. That was a hard day for me.

As a side note, including this port placement procedure, my husband has been in surgery, under some form of sedation, for a grand total of 14.5 hours in the past 3 months. What the actual fuck. This cancer shit sucks.

Anywho, back to the poison that is going directly into my husband’s heart. Not passing GO, not collecting $200, just straight to the heart. At this point, I just sort of wanted to get this over with. Tho, admittedly, I was a bit intrigued to see how they were going to use this port situation. So when they came over to get things started, I perked up a bit. How it works: They use a small needle which gets pushed through the skin into the middle of the port, and that is what delivers the chemo.

So we get there at 8am and wait a bit, we pay our copay ($100 every time we go. $50 bucks to this specialist, $100 to that one…oh, another $100 to this doctor — the copays never end, ughhhhh) and get registered. They bring us back to another waiting room, where we sit for another 20 or so mins. Finally, we get into the chemo room and we take a look around. My husband and I both look at eachother and just burst into laughter! We both knew exactly what the other was thinking! Andy is the youngest one in there by AT LEAST 3 decades. I mean, come on. Add insult to injury, all these folks have lived a long healthy life and got the short end of the stick towards the end of the line — but us?? Nope. We get the short end of the stick now. We just have to laugh at our situation sometimes because really, WTF? It was likely not the best reaction we could have had when first entering the chemo room, but, what can you do?

Once they had Andy’s port hooked up and working, they did all this “pre” stuff. His iron was low so he needed an iron infusion (something I also blame myself for as I kept meaning to order the iron supplement along with all the others I’m having him take, and just completely forgot, face-palm.) Then they gave him a steroid which would help with the absorption of the 5FU and would also give him a needed energy boost for about 48 hours to get through the bulk of the chemo, they gave him some antibiotics and benadryl which would help if there was any type of reaction to the poison cocktail they were about to give him, a massive amount of anti-nausea medication, a dose of Tylenol and also some amino acids. Half way through all this “pre” stuff they switched him from saline solution to a sugar water solution because the chemo doesn’t play well with salt apparently, so they needed to have a decent amount of the sugar water in his system before starting the actual chemo.

While we were sitting there, we decide to check to see if Andy’s blood work they did last Friday was back. And it was:

CEA: 1.4 (a 1.8 drop, normal is 3 or below)
CA125: 9.9 (a HUGE 47.9 drop!! normal is 30 or below)

We were elated to see that everything had dropped! Even tho his CEA wasn’t high to begin with, it was still such a relief to see it lower. And, my God! The CA125 dropped more than 40 points!! He is now FIRMLY in normal territory! All this was a welcomed bright spot in this day.

Fast forward to around 11:30am — its finally time for the chemo to begin. In the same way it was weird watching him go willingly into surgery, it was weird watching him receive this chemo. In your head, you imagine people kicking and screaming and being taken against their will, FORCED into this position. It’s like I thought the chemo was going to come out of the pharmacy glowing this neon radioactive color, like on the Simpson’s or something, or have some sort of indication that THIS was the BAAAAAAAD stuff, the stuff adults have nightmares about. Getting cancer. Having to go through chemotherapy.

But no.

It was clear, just like the solution they were already infusing. They just hooked it up and let it drip. Again, a bit anticlimactic, but I didn’t know what to expect. I do remember watching the tubing as they hooked it up and thinking it could only take maybe a minute before it actually got from the bag into my husbands heart. So I sat there, a bit on pins and needles, watching the tubing, imagining the chemo solution working its way down the tube, through the loops, slowly, and then up through my husbands lap and finally into his port, just waiting for something bad to happen. But it didnt. Andy just continued working on his computer as he was doing prior to the switch over. Doubtful he even noticed they started the actual chemo solution, lol I was acutely aware.

So that was it. I sat there for about 45 mins (just to be sure nothing bad was going to happen!) then I left to get some food and go home to exercise. By the time I got back, he was done! I had no idea the actual chemo infusion would only take 2 hours! So when I arrived, they were hooking up his chemo box, which he gets to take home with him for a continuous infusion over the next 48 hours. So, for 2 days, his port is connected by tubing to this box which, he lovingly calls, his chemo-sabe box, and he has to carry it around with him like a purse. Of course he LOVES that, lol The chemo will slowly infuse the entire time. If you’re not counting, that is a total of 52 straight hours of chemotherapy. 12 times. This is why they call cancer patients warriors.

So, on our way home, he did mention to me that he had some metallic taste in his mouth and that water, usually his liquid of choice, just tasted “weird.” The first night was okay. He had a bit of jaw pain at dinner and he was pretty restless throughout the over night hours (from the steroids, which they did warn us about) and he had a pretty bad bout of acid reflux around 3am along with some pain at the port site. If I hadn’t been asleep, I would have told him that all that was normal, and to take some antacids and prop himself up with pillows so he can sleep more upright, a little trick I learned from being pregnant and having massive indigestion. But, since I was asleep, he ended up calling the exchange number — and they told him that all that was normal and to take some antacids and sleep in a more upright position. lol

That morning, he had his first twinge of cold sensitivity. Not anything completely awful, but, in the mornings, when he pours his coffee into his to-go cup as he walks out the door for work, he grabs 1-2 ice cubes and plops them in the coffee to cool it down. That morning, he reached into the freezer to grab some ice and thats when he noticed the sensitivity. Sensitivity is really the wrong word here, he said it felt more like shards of glass poking him as he grabbed for the ice cube. Well, okay then. Gloves for him from now on! He went into work and had a normal day! I checked in on him a few times:

Me: How you feeling, my love? 😘🤗🧡

Him: Great.

Great. Okay, I’ll take that as a positive! When he got home, his face and neck were flushed. I asked if he had been in the sun at all and he said no. So we took his temp and it was completely normal, just interesting to see him walking around all rosy cheeked ☺️

Last night was pretty much normal. We went to bed, there was no calls to the exchange, no bouts of reflux. Andy slept well, I slept well (the reprieve I had been waiting for!) and today we get the chemo-sabe box off! He’ll get some IV fluids when they remove the box and that should help him feel a bit better for another couple hours or so. But, they told us to be prepared for his energy to tank tonight or tomorrow. All these “feel-goods” they’ve been giving him will wear off and he’ll be out in the wild on his own at that point with only pill form medication to help. So we’ll see how it goes. I think we’ll both feel much better after we have this first round under our belt and behind us. Onward!

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 🙂

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?