Category: March 2020

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.