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!

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!