Healing and Hope

I have to say, it’s been more than a minute since I’ve posted an update, and its not for lack of content, lol It’s more about myself, taking a break from all this cancer stuff to just … be.

Its been more than 2 years now since my husbands initial diagnosis and surgery. It’s been a little over a year since he completed (hellish) chemo. Just after chemo, we ran head first into Covid 19, which was a struggle in and of itself for other reasons. Honestly, I feel like now, just now, I’m finally coming out of the fog that started in April 2019.

So how have I survived?

Good question. People ask me this all the time. How did you do it? How did you get through all that? I mean, as this blog clearly illustrates, it was not easy, but time has given me something I did not have while I was in the thick of it. Perspective.

In the beginning, it was all about learning as much as I could about this cancer. I sucked up knowledge and became an encyclopedia of appendix cancer factoids and statistics. In retrospect, was all that healthy? Maybe, maybe not. I talked myself into scenarios and I put myself in the shoes of those going through something so much worse than what we were actually experiencing. I made myself believe that things were worse than they were at the time. I kept waiting for things to go very very wrong, and I couldn’t get on board with things actually going very very right. Maybe right is not the correct term, maybe okay, very very okay. But I think I was trying to shield myself from a worst case scenario. If I told myself that things were going to be awful, then I would not be caught off guard if that happened. IF that happened. It never did. My husband may have been healed, but I was not healing.

So how did I overcome this? Welp, a few things, but what it really all boils down to is this:

Giving back

I threw myself into others. Some efforts have panned out better than others, but the intention was the same through everything. One of my first attempts was a Kindness Brigade Facebook page which was focused on helping those in our immediate neighborhood facing tragedy. I live in a very tight knit neighborhood and we have a very giving community spirit. So I tried to organize around that and we had some success, but the effort ended up being a bit more than I could manage and I sort of just let it die. It was a really good idea tho!

My second attempt was sort of in the same vain, when Covid hit, I tried to rally our neighborhood to participate in a cash mob to flood our local businesses with a cash influx when everything was shutting down and the idea of carry out was the only option left for restaurants as a survival mechanism. It worked very well in the beginning, but as the pandemic wore on, people became disinterested and that effort faded as well.

At that point, I was sort of grasping at straws to find a way to channel my energy into something that was meaningful for me, but was less of an ownership role. That’s when the heavens parted and angels sang, and a notification that the ACPMP Research Foundation was accepting applications for a brand new Patient Advisory Council! This was EXACTLY the thing I was looking for! This is the only entity that exclusively supports my husbands rare type of cancer, I was elated! I couldnt wait to submit my application! I had found my niche group and I have been so happy participating in the calls and events to try to help raise awareness and raise funds for research!

Very soon after I become a part of the Patient Advisory Council, I had another opportunity to join the board for a local organization that helps celebrate milestones in cancer patients’ journeys, 3 Little Birds 4 Life, so I jumped at the opportunity to help in a local capacity too!

It is through the process of helping others that I have actually found the healing I was searching for for the past 2 years. It has helped me emerge from the fog and let go of a lot of the worry and doubt and concern that was weighing me down. It has been a slow and arduous process and, go figure, it has taken me WAY longer than my husband to heal from all of this. lol

So how is he doing?

Welp, he’s great! We were in Houston last month for his first face-to-face meeting with the specialist team at MD Anderson since our initial consultation way back in 2019. I am happy to report that the “thickening” that had been noted on my husbands previous scans was not seen on this scan and we finally, Finally, FINALLY saw the word UNREMARKABLE, and heard the words No Evidence of Disease, and for the first time in this journey,

I truly believe it.

Sending Off the Scans

Somehow, someway, under some miracle, my husband has actually taken the initiative and SENT HIS SCANS TO THE EXPERTS!!

Let me back up.

Earlier this month, my husband went in for his second scan post chemo. His first scan showed this “thickening” on the bladder/kidney area, which scares the bajeezus out of me since this is what I hear all the time on my Appendix Cancer Facebook page of what indicates a recurrence. So I was really hoping for some clarity with this most recent scan — but, I didn’t really get that.

Our appt was on a Tuesday. We got to the office and did our COVID screening, no temps, no travel, no symptoms, check. Mask on, check. My husband is taken back to get bloodwork (he ended up going through with the port removal, so they had to stick him this time in his vein to get the blood — sort of serves him right, lol) then we’re directed to sit in the waiting room and wait for his name to be called. I’m not really nervous this time around. I don’t know if my husbands calm demeanor or his take-it-as-it-comes attitude has finally worn off on me a bit, but for some reason, I am not nervous going into this appt. We’re called back and they get the normal set of vitals, they get his weight and once the scale lands on a number, my husband takes his hand and hides the digital readout so I can’t see the number!! He says, Don’t look! in a joking voice. Well, haha, that’s not going to happen! Also, the nurse needed to see the number so she could record it. His weight: 180.2 lbs. That is a full 40+ lbs LESS than what he weighed before all this started! I mean, lets be honest, I’m not mad at it! lol My husbands new slimmer, more narrow build is NOTHING I’m mad about! But to see that number, it really puts it in perspective the physical change he’s gone through. Sigh.

So our oncologist enters the room, sits down and starts a little small talk. She gets to the scan and says, Welp, there is nothing that I see. Everything looks the same as it did last time. I let her finish her thought, and I ask about the thickening area on the bladder that was noted last time. She said that the area remains thickened and there is no change from last scan. So I turn to my husband and tell him that we should send the scans to MD Anderson. The oncologist (who, might I remind you, we don’t really like) looks at me with this discontented look and asks me what I think the thickening means? I tell her that I’m not sure, but it could mean something and that the specialist team might be able to give us a better picture of what it might or might not be. Honestly, no harm no foul. I know this oncologist we have is not a specialist and I don’t fault her or the radiologist who interprets the scans for not knowing how to properly evaluate them for my husbands rare cancer. It just is what it is. But I wanted to make a point to say something.

And good Lord, it’s a July miracle! Almost a week to the day from our meeting, my husband got a hold of the oncologist we met with at MD Anderson and nonchalantly, almost in passing, like it was no big deal, informed me that he sent his last 2 scans to him.

WHAAT??! OMG!

I was so elated I basically fell out of my seat when he told me. He did this without me having to nag him. He did this without me mentioning it 20 times. He did this all on his own! I feel like such a proud wife! lol I just want to squeeze his cheeks and pat him on the head and say Good job, buddy! I had the BIGGEST smile on my face when he told me about this, I just could NOT believe he took the initiative and did this on his own! I was SO happy! I was SO relieved! Maybe some of my harping on expert opinions and making sure we involve the specialists is wearing off on him?

So now we’re back to waiting on what the experts have to say about the scans. At least this is progress!

In other news, we ended up having my daughters high school graduation party and it was a HUGE success! I know, I know, covid, covid — blah, blah, blah. I’m over it. We were safe, we had a big portion of it outdoors (yes, in the July heat, in St. Louis, it was H-O-T, so that’s saying a lot!) and I was so happy with the turn out! They had a socially distanced outdoor graduation ceremony and it was actually AMAZING! There were awesome pyrotechnics and even tho it wasn’t a “normal” graduation, by any stretch of the imagination, I still got all the mom feels about seeing my daughter walk across the stage and receive her diploma! In the end, it didn’t matter that it wasn’t a normal graduation, she was graduating, and I was proud!

Now we’re in the throws of figuring out what to do with this upcoming school year. Our youngest will start Kindergarten, the middle-est will be a Sophomore and my oldest will be away at college. Trying to understand the plan for the Kindergartner is my top priority since working full time and having a full time 6 yr old at home is really not a plan at all. I’m sure it will all work out in the end, but it still makes me nervous not knowing how things will turn out. I can only hope that by the time my middle child is a Senior, all this will be done and over with and we can all go back to normal!

Desperately Seeking Unremarkable

(If you got that 80’s movie reference, you are my people. 🤪)

So. It’s been a minute. Let’s talk about unremarkable. This is the term that radiologists use when they have no finding to report on a CT scan. Unremarkable. Its absolutely insane to think that anyone who has been through cancer should be lumped into the same category as any old Joe off the street who goes in for a CT for something completely mundane (likely not mundane to the person undergoing the CT scan, but for all intents and purposes, ALL scans that do not have to do with cancer are, in my mind, mundane) and their scan indicates no problems found. “Unremarkable” is the term used when everything looks normal. As in, there is no remark to be made, all is as it should be. Unremarkable.

My husband had his last CT scan on April 6th, that was about 2 months ago. This scan was meant to confirm what we all hoped to be true, that there was no evidence of disease. Now — if you’ve been reading this blog for any amount of time, you’ll recall that I have quite a distrust of these scans. I really HATE that we’re in this position. Stuck with a cancer in which there really are no good diagnostic tools to detect, but here we are and, for better or worse, we have CT scans. And the scan didn’t exactly give me faith in the process. Instead of unremarkable, we got this:

There are subtle areas of non-masslike decreased enhancement involving the cortex of the lower pole of the right kidney. In addition there is mild diffuse thickening of bladder wall.

That doesn’t exactly sound like good news, does it? While our oncologist strongly pointed out to us that she “doesn’t think” its a recurrence, welllllll I’m not so sure. This word thickening is frequently used to describe how this cancer is found and it brings me no peace to see it used here … even if our oncologist thinks its not cancer. I wish I could do something! I wish we could send this to our specialist team at MSK, but my husbands insurance changed on Jan 1 and they are no longer in our network! So we’re stuck just taking the oncologists word for it.

To be clear, I pushed and pushed for my husband to reach back out to MD Anderson in Houston to see if they would be willing to take a look at the scans. (They ARE in my husbands new insurance network.) Since we had already met with the oncologist there too, I think we might have an in and at least get a specialist team to look at them to ease my mind a little bit. But, ultimately, this is not up to me. My husband has to be the one to push for this to happen. I can want him to do it all I want, but at the end of the day, I cannot make the calls for him, they won’t talk to me because of HIPAA privacy laws. So I’m stuck depending on my husband to take care of it — and he won’t. So I’ve sort of had to let it go.

So I did.

And things have been GLORIOUS! After chemo was over and we were through the thick of if, the air lifted and everything became calm … well, as calm as you could get in the middle of a pandemic. But it has been so wonderful not having to worry about chemo or cancer or any of that for these past few months! Apart from the port in my husbands chest and his more lean physique, (can’t say I’m super mad about that, lol hubba hubba) we have very little physical evidence left of this cancer journey.

So about that port, he attempted to get it removed a couple weeks after his last chemo treatment, but they had stopped allowing elective procedures so he couldn’t. They finally called him back last week and he made an appt to get the port taken out on Monday.

I thought I would be happy about this. This whole time, we’ve both hated that thing, this constant reminder of cancer, this foreign alien body sticking out of his chest. When we cuddle, I tend to lay on that side and this hard rock, for lack of better analogy, just pokes me and I want it gone. But that little voice in the back of my head keeps hearing that word thickening and my mind immediately goes to recurrence. If he has a recurrence, the next step will be a different chemo regimen. We’ll be back on the awful chemo boat and he’ll have to get the port put back in. Another surgery, more time spent looking at my husband passed out in a hospital bed. I think at this point, I question whether he should get it out or not. His next scan is in about a month, on July 9th. At that point, we’ll have the 2 scans to compare and I think we’ll know for sure whether there is any type of recurrence or whether our oncologist was correct, and there really wasn’t cancer on the April 6th scan. IDK. Maybe I’ll have a convo about it with my husband, he’s not usually open to these types of conversations, he wants me to be nothing but positive and he really doesn’t want to hear anything else except blatant positivity … but the closer I get to getting this out, the more apprehensive I am.

In other news, I FINALLY got my daughters senior pictures taken! We took them last night and I am BEYOND excited to see them! We rescheduled 5 times and yesterday was such a special day for us!! She got her makeup professionally done, we went shopping last weekend for some outfits, we got to spend some really amazing quality time together and I do believe that as she begins her college career, our relationship is starting to mend itself a bit. This makes my heart so incredibly happy! Here are some shots I snapped from my phone, not the best angles, but I just ADORE them already!

So I guess the moral of this story is — I’m still desperately waiting for a scan that proclaims UNREMARKABLE! I have faith that it will happen, I just don’t know when that will be. Fingers crossed that its with this next scan!

The Big C, Squared

Cancer and Covid-19. Welcome to hell. For those who do not have cancer or do not have a loved one with cancer, this, right here. This, right now. This is what it feels like to be told you have cancer. You’re bee-bopping along in life for years, decades, even, then one day BAM! You’re thrown off your Peloton bike and all of a sudden you’re thrust into the unknown. Forced into this space where you are uncomfortable, where you are lost and constantly wondering, what the actual fuck is happening? Questioning if this is real and bargaining with yourself that this must just be temporary. That if you can just get through these next few days, weeks, months, everything will be normal again and you can resume life as if all of this never happened.

But can you?

We were one of the lucky ones. My husbands cancer treatment ended just as the Covid-19 pandemic was taking off. I had called the chemo center prior to bringing in 15-20 people for Andy’s ring-the-bell, just to make sure it was okay that we were all back there, and it was, at that time. But had we decided to do the ring the bell the following week, or if my husbands pesky ANC was off and we had to wait another week to complete the chemo? I don’t think we would have gotten the opportunity. Things escalated so quickly! One week everything was fine, and the next week, we were literally all in lock down! Toilet paper was flying off the shelves like this virus was a GI thing (it’s not, its an upper respiratory thing, so I’m not sure what the deal is with the TP?) whatev, I’m just glad my husband accidentally grabbed a Costco size package of TP on his last shopping trip, even tho I asked him to grab paper towels. For once, and this might be the ONLY time in my life I will say this, but, I’m grateful for his lack of attention to detail! lol

As China was reeling from this virus, in the beginning of March, us in the midwest had only just heard about it from the national news. It wasn’t at our back door, it wasn’t even hitting the east coast yet. I honestly gave it no thought, like, zero thought. And then, it hit. One day it was a passing notion, the next day, it was EVERYWHERE! It hit Washington state and the east coast first. Even into the second and third week of March, it was still pretty distant for us. Then, March 23rd hit, and it was a shit storm of precautions. This new term “social distancing” became the phrase that would ingrain itself in our subconscious, drilled into us over, and over, and over again until we complied. People became frantic, store shelves were emptied the second they were stocked, people went NUTS over toilet paper!!? The economy came to a screeching halt. Retail stores closed, restaurants went from limiting patrons to doing only take-out orders or delivery. The demand for workers who did your grocery shopping for you went up 1000%, as other industries laid off workers by the thousands. People were being forced to work from home, schools and day cares were closed and everyone had to switch, seemingly overnight, to a new normal. Noone had any idea what types of restrictions to expect next. Noone could tell us what was happening and the experts who were all supposed to know these things, seemed to disagree on how to best contain the spread.

So now its really day by day. Over the course of the past 2 weeks things have spiraled, almost uncontrollably into chaos. The east coast being hit the hardest and us here in the midwest, just now starting to feel some of the effects. So what are we doing? We are being told to “shelter in place” another new phrase that basically means don’t leave your house unless you absolutely have to. Getting groceries, okay. Going to the doctor, okay. Going to work ONLY if you’re an essential employee, okay. Otherwise, we’re being told to stay 6ft away from anyone who does not live in your household and to wear a mask over your face and nose if you need to leave your home. The general consensus is that its best to just stay home. So much so, that you’re basically shamed on social media if you’re caught out and about.

But all these changes are SO hard! My daughter, who is a senior in high school, is basically missing ALL of the things that she has looked forward to for 4 years! Its literally heartbreaking. I am SO sad for her! Prom? Graduation? Rose and Candle ceremony (a tradition at her school where the seniors “pass the candle” on to the juniors representing how they will become the next leaders of the school) — all that? Unknown as to if or when any of it will happen. It’s all up in the air and its just a completely shitty place to be at. My husband who is severely immunocompromised is still out and about working in the general public because he refuses to tell his boss he can’t go to his sites. I can’t make him stay home. He doesn’t listen to me, lol

So I’m stuck at home with 3 kids, all while trying to work full time. I work remotely anyway, but working at home with a full house is VERY different than working at home by myself. The 2 teenagers are trying to do e-learning virtually through their schools, and the 5 year old is attempting to drive me insane. Literally. It’s a nightmare. I am having the big kids help out, but there is only so much they can handle and I feel SO awful sticking my pre-schooler in front of a tablet or the TV for hours on end, but what choice do I have? I HAVE to work!?

All of this sucks. It just does. Not to mention that our little trip to Kansas City to celebrate the end of chemo was completely cancelled because of all of this virus nonsense. So, there’s that too. I guess I’m just being a bit down today. Andy and I are trying to make the best of this situation, even tho we didn’t go to KC. We did end up taking last week off work, but it wasn’t really like a vacation at all. We were still home, we were still with all the kids and they were all still in school. Saturday, April 4, marked 1 year since we got the diagnosis. I ordered a special dinner and we had the teenagers babysit the 5 year old while my husband and I had a “date night” in our bedroom, lol I made a makeshift table out of the ironing board and we even had some fancy table linens and some ambiance (a candle, lol) But the food was amazing and the wine was delicious. We decided that we would make the most out of it, given the situation, and we definitely did!

But that somehow leaves me in the same spot that I started. Wondering when this will end. How will it end? And will we ever get to be normal again?

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.

Roller Coaster of Cancer

It really is true. You think you’re on a downhill slope, hands up, smile on your face, wind in your hair, happy. Then comes the dip, your stomach drops, the weight of the force on your body pushes you down into your seat, and your back climbing another hill.

Lately, it’s become difficult to identify why, exactly, I’m struggling. Is it because of the stress of the chemo? Things have actually been going smoothly! …apart from this week, in which my husbands ANC level (thorn in our sides) was too low to qualify for treatment. But every treatment he’s received since he re-started chemo on Dec 26, has gone off without a hitch! He’s been able to get chemo every 2 weeks for the past 3 cycles! The back half of this treatment has been SO much easier than the front half, and it was going just as planned! Until this week, that is. But it really hasn’t been much of an issue. I mean, don’t get me wrong, I’m OVER chemo. Like, seriously. Can it just end already? But it’s not a stressor for me anymore because I pretty much know what to expect and I plan my life accordingly. Alone for a week? Check. Loneliness and extra hustle? Check. Extra wine? Check.

Is it because of the stress of life? I actually think that has more to do with it than anything else. Since the beginning of Dec, my husband has become more and more brazen with his smoking situation. Smoking cigarettes much more frequently, smoking (vaping, ughhh) pot in the house, in other peoples houses, in public, in front of our 5 year old. (rolls eyes) He thinks there is absolutely NOTHING wrong with it. Meanwhile, I’m appalled, embarrassed and find myself constantly apologizing to others for his behavior. It has become so bad that he only sleeps with me maybe 1 night a week when he’s off chemo. If you’ll recall, I have told him outright that if he’s smoking cigarettes, I do not want him sleeping in bed with me. The smell disgusts me and no matter how much he showers or how much Listerine he uses to disguise the stink, I can smell it, and whatever small hour of the morning he decides to crawl into bed, I immediately wake up and feel gross. So, on the nights he has his little 1 person parties, he sleeps on the couch or in the basement. Anywhere but next to me. But the thing is, he’s smoking SO MUCH now, he’s literally NEVER in bed — and that has created animosity and distance. I’m angry at him for smoking. I’m just SO pissed at him for choosing to continue this terrible, awful, life-threatening habit while he’s going through treatment. For cancer. I can’t get over it. So, there’s that. In addition to that — fuck, I’m lonely! Not only is my husband out of commission the ENTIRE week he’s on chemo, but now he’s MIA in the evenings the week he’s off chemo too! It’s really one of the only opportunities we have to connect, laying in bed watching a show or the 10 o’clock news and just being there. He’ll be on his phone or reading a book, I’ll be doing my thing, but we’re close to each other (in proximity) and, while it may sound stupid and mundane, it brings me peace. Now that has been ripped away from me too. Ughhh. On top of all this, my relationship with my daughter has been very strained this year. It’s her senior year of high school and the timing for all this cancer shit was, admittedly, bad. It’s taken my focus away from her special year and she’s been acting out. I feel awful about it. And as this year has progressed and the end of her senior year has become closer and closer, I’ve been realizing how much I’ve missed out on, and how much I really wish I could get that time back. It weighs on me heavily now and I’m just not sure how I can make it up to her. My focus has been on Andy this entire time and I sort of left everything else on auto-pilot. I was just trying to survive and get through all this, but in doing that, I see now how much I truly missed and I’m really sad about that. I’m trying to right that ship, but I fear that it will not be enough and she’ll just resent us for the time we’ve, essentially, stolen from her during this incredibly formative year. I just hope my last ditch efforts will be enough.

So today Andy and I met with the therapist again. Its Valentine’s Day, lol We went to the love doctor on Valentines Day, that has to be the start of some kind of joke, right? lolz Trust me, it’s not. Today was not a great session. I was sort of all over the place. What I really wanted to do was let Andy do most of the talking since, surprise, surprise, I hijack most of the conversation during our sessions. But he was stuck in some random middle-of-the-day traffic jam and ended up getting there 20 mins late — so we went ahead and started before he arrived. I was already fired up by the time he got there, so there was really no stopping me at that point. But I left feeling very uneasy. I don’t like feeling this way, ESPECIALLY on a day meant for lovey-dovey! I’m struggling even to understand what it is, exactly, that I’m struggling with. I can’t quite put my finger on it, I know it has to do with his cigarette smoking and his pot vaping and the extra loneliness that all this has brought with it, but I’m usually better at identifying what the underlying issue is. Right now, I’m at a bit of an impasse with myself. I guess that’s why I was all over the place with the therapist, that is sort of how I feel right now. All over the place. With my emotions, with my relationship between me and my husband, with my relationship with my kids, with anger, with regret. I’m just uneasy and I’m debating attempting to re-start the conversation with my husband when he gets home from work today. Very rarely does that end well, but that’s sort of where I am right now. Idk. Couldn’t get any worse!

$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.

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!!

The Christmas Miracle

Maybe it was the snow. Maybe it was because what I said finally resonated with him. Maybe it was because this last chemo round was far worse than any other round to date. Maybe it was the fact that I finally SHUT UP about it and let him make some decisions. Whatever the reason, my husband has decided to hold off the next round of chemo until after Christmas!

This was (Christmas) music to my ears! But I played it cool. I’m being very careful now not to show too much investment or concern, elation or overwhelming anguish in the decisions he’s making for himself. This is hard for me and I really have to check myself when I feel an abrupt reaction coming on. So far, so good. Its only been 2 weeks, lol So when he got back from his guys trip, I didn’t interrogate him on when he rescheduled his chemo appt. I didn’t remind him to call, I didn’t ask about dates or times, in fact, I didn’t say anything at all. It was KILLING me, BUT, I knew that if he wanted to share, he would. So I let it be.

The night he got home it had been snowing ALL day. It was beautiful! We were cozy in bed, the kids were asleep, or at least in their rooms, and we were laying there just talking. He was telling me about his weekend with his friends and I could tell that his batteries were fully recharged. He really did deserve a weekend away with his buddies. He needed it! I’m so glad he went and all was well while they were there.

Then he casually mentions that he’s decided to put off then next chemo round until after Christmas. My ears immediately perked up. He said that he believed he did his part in getting one round in during this crazy month and he agreed with me that waiting another week or 2 for the next round wouldn’t be a big deal. HALLELUJAH!! I thought to myself, of course not showing that emotion on the outside, but just listening to him talk. Then he continued, “I have it all planned out!” I thought, oh great. (rolls eyes) So I asked what the plan was, and he says “I’m planning to go in for chemo on the 26th!” …Well, it was a plan alright, not the plan I would have organized, but if that’s what he wants to do, I’m going to let him do it. At least I’ll have peace for Christmas!

So there it is! Chemo the day after Christmas, lol I bet he’s not called to schedule this yet and I wonder if he’ll even be able to get an appt on such short notice. I would remind him, but I don’t want to seem like I’m prying in his business, so I’ll just sit back and let him figure it out! It is sort of freeing, actually. If he can’t schedule chemo for the 26th, he’s the one who will have to deal with finding a date that will work and rescheduling everything, having his “plan” completely disrupted — I’m just going to be over here waiting for him to tell me where to be and what to do. This frees up SO MUCH space in my life for other things! Merry Christmas to us!

Update

I want to provide a small update on where things stand. While I am not excusing my husbands behavior in any way, he did come to me and offer a bit of an explanation into what has been going on. Over the course of the past 168 hours, or 7 days, he’s basically been in bed for 120 of those hours. This was agonizing for everyone, including him. I think a lot of the time I don’t show the sweet and kind side of my husband. His cool, calm and collected side which is rational and balances out my crazy. I use this blog to help myself understand my own thoughts and emotions and in turn, they are often displayed in a way that is raw, full of intensity, harsh and abrupt.

And one-sided.

While I am very comfortable displaying my struggle flag, waving it around for all to see — helping me feel less alone and providing comfort and support while I struggle, my husband is very private about his struggle. He wants noone to know, and does not want sympathy or comfort from others. He even gets upset with me, sometimes, when I tell others about his struggle. He claims that it causes unnecessary worry and he would just rather say nothing. He would prefer to suffer in silence with only me knowing the (somewhat) full extent of what he is going through. I’m sure what he’s shared with me and what I have witnessed is not even half of what his true struggle actually is.

While waving my struggle flag around helps me tremendously because it allows me to organize my thoughts in a cohesive manner and I find it unbelievably cathartic to write it all down, as I feel it, as it’s happening. I’m not always right.

Yesterday (Saturday) was the first day that my husband was able to get out of bed since getting the chemo box removed. It took him a bit to get going, but he mustered up enough energy to join us at a volleyball tournament and even participate in a Christmas walk along one of the cutest and most festive streets in our city! It certainly wasn’t easy for him and he had to take frequent break’s, but he managed because he knew how much he had missed, and how much it was affecting me. So he sucked it up and powered through.

When we got home that evening, he looked exhausted. Not only has he lost, what is likely, another 5lbs from this week of being in bed, not really eating, and sleeping all day, but his eyes are sort of sunken in now, and its very easy to tell when he needs to rest. It kills me to see his body withering away knowing that its only going to get worse and it will never be “back to normal.” But I am hopeful that after chemo is over, he’ll be able to regain some strength and start to take better care of himself on a consistent basis. Right now its all about survival.

Once we got monster to bed, we started talking about next weekend. He’s been planning a trip with his 2 best friends for a few months. Why I never put 2 and 2 together that it was THIS month, in DECEMBER, during one of the ONLY weekends he’ll be feeling well, is beyond me. (face-palm) Regardless, he’s been planning this trip for months and its next weekend. They are all driving to Cincinnati together to watch a football game. The three stooges! lol Srsly tho, one of them is in kidney failure and has to bring ALL of his dialysis equipment with them to do dialysis every night for 12 hours, my husband is in stage 4 cancer and currently going through chemotherapy, and the other one … well, lol He’s the lucky one of the bunch I suppose, he’s just fine. But here they all are, bound and determined to watch this football game. So, Andy is supposed to get chemo again on that Monday after the football game and, in passing, he tells me, oh — I’m just switching my chemo to Tues instead of Mon that week. And I sort of start to flip out. I tell him that switching to Tues would completely throw off the entire schedule for the remaining treatments. Not just that, but we purchased tickets for the Polar Express, which is a BIG deal to me and if he switches to Tues then he basically has NO chance of coming with us to this event and that literally breaks my heart … and I go on and on.

This conversation begins a bigger conversation about what had transpired that week. I tell him about the internal struggle I was having and that I had been thinking about letting go of that burden of concern. When he challenged me to think about what would happen, like what the result would be from letting that go, how that would actually physically manifest itself — I told him. I was completely honest. Through tear filled eyes, I shared with him that I was terrified, because if I gave it all to him, he may never ask for my help. He may never tell me I was needed or wanted for the support I could offer. And that was what I thought would happen if I gave it away. It is the most terrifying outcome that could possibly happen for me out of this situation.

He looked at me, he walked over to me, he put his arms around me and he said “I can’t do this without you.” He told me that he did want my help and my support, that of course he wanted me there with him at all his doctors appts and during hospital stays, he appreciated all the time I was spending with him at every step along the way. He admitted he did not have the capacity to remember all the information or stats or even understand half of what they doctors were talking about and he relied on me for that too. He said the day he told me he didn’t owe me any information was a rough day for him. He was feeling awful and he was embarrassed and in pain from his constant diarrhea situation and was just completely over it. He took his frustration out on me and he didn’t mean to do that.

The conversation continued for a bit and he even said that he’d been thinking of just calling the oncologist and cancelling chemo for December, like I had wanted all along. He admitted that he didn’t want to deal with it either and clearly this was only going to get harder from here on out. He hadn’t made a decision yet, but he wanted me to know that he was considering it.

And that is good enough for me!