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!

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.

$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.