#coltonscure

Just a heads up... this post will likely have grammatical errors and seem somewhat like word vomit as I’m writing it from yet another waiting room. Bear with me. Last update was about insurance approving the meds that Colton needed to treat the last pesky tumor. During his third (out of four) infusion of that treatment, his oncologist suggested to us to consider radiation. She believes that the tumor is either staying the same or may have slightly grown since the PET in February. During the last three weeks or so, Colton has been doing physical therapy and lymphedema therapy for his leg that has previously gotten radiation. His range of motion has improved tremendously and the swelling of his leg is almost completely gone and looks nearly the same size as his other leg. He has to wear a tightly fitted sock on his leg that helps keep the fluid in his leg down.

Wednesday we had a consult with the radiologist about his thoughts on radiation. He wanted Colton to get an updated PET scan so he knows exactly what he’s dealing with since the last scan was a couple months ago. Going off the last scan, he suggested us to do a newer type of radiation called Proton Therapy. We have a couple of friends that used this type of radiation for him and it seemed to work well. The final decision if we will do that type of treatment will depend on these PET scan results. If the tumor looks the same as February or larger in any way, we will do the Proton Therapy, but if it has shrunk at all, there’s a chance of us doing the traditional radiation treatment. The only bummer about us doing the Proton treatment would be that we would be traveling about an hour into New Jersey everyday for anywhere from 5-15 days since that’s where the treatment center is, or we may possibly just get a hotel there for the duration of the treatment. But we realize that if that’s what we have to do, we’ll do it. If we end up doing the traditional treatment, it will be in the city and could be about the same amount of days. Colton’s in his PET scan right now and the radiologist said that we should find out by Tuesday what the PET scan results are and, if we need to do Proton Therapy, if insurance will cover it. If insurance doesn’t cover it, he said that traditional will do the job as well, but obviously, we would like to use the newer and more proven option. No matter what type of treatment we end up doing, one side effect will be continued lymphedema issues, which will mean Colton's lymphedema therapy will most likely be ongoing.

So, that’s kind of where we’re at right now. Amongst all the doctor’s appointments, we’re still doing our NYC thing. Colton’s still working and has a few big jobs approaching, and I’m still doing the coffee/beverage thing. Oh, and to end this blog on a more positive note, WE GOT A DOG!

Her name is Clementine and she’s the sweetest thing you’ll ever meet. We rescued her from the ASPCA last week. She’s 2 years old and a pit/terrier/mutt mix. She’s such a sweet heart and so well behaved. We had been thinking about getting a dog for a bit, just because I’m now working full-time out of the house and Colton works from home. He’s home alone a lot and he needed company. This is also a motivation for him to get out of the house and get moving and take walks while I’m not there. We plan to get her certified as an Emotional Support Animal so that Colton’s able to take her with him on shoots, to coffee, and on flights. Here’s a few more photos cause she’s just so dang adorable!

Cute right? RIGHT???

Here we are again. 

7:43am.

In a waiting room.

Waiting for what sometimes feels better off as the unknown. 

This is Colton’s first PET scan since the radiation to the last remaining tumor in his groin area. It’ll be head to toe and we’ll find out results tomorrow.

His scan was originally scheduled for this Friday and we would learn the results at his next treatment next Wednesday, June 28th. But we got a call yesterday morning saying his doctor would be out of the country next week and she wanted to know the results before she left. 

Having the process sped up to today and tomorrow instead of a week away brought a shock to both of our systems. After picking up and moving to the “Big Apple” at the drop of a hat you’d think we’d be able to handle a little change like that. But, and I think I’ve mentioned this in previous posts, we have this routine we tend to go through. The week leading up to the scan and results, we tend to find ourselves sitting in more and more silence. Not finding too much to converse about. Getting in our own heads. And then when we do talk, it usually turns into one of us being petty about something stupid and it ends in harsh words exchanged. So, needless to say, we skipped a few steps. Luckily it was more of the sitting in silence and not talking than the fighting about stupid stuff part. 

As we go through the motions of what it means to be “battling cancer” (hate that term), it’s just a routine you get used to. Ok, schedule treatment every two weeks. Cool. It’s just something else in the calendar. But scans never become “just something else in the calendar”. It’s like a looming date where we feel like we could just go without. It’s to the point where we just would rather not know than know. It’s like living in ignorance if we didn’t know. Which sounds more blissful than going through it every 3 months.

I was talking to a friend yesterday and he was asking me what the outcomes the scan could be. So I was explaining the options we could possibly be facing.

1. Everything’s gone. 2. Everything’s the same. 3. There’s more there than before.

And we talked about what Colton and I were hoping for, since we know it won’t be #1 because we can still physically feel the tumor from the outside of his body, although it is shrinking. I externally processed what I now realize to be that hope has left my mental dictionary. I don’t really hope. I either know or don’t know. But at this point in the game, hoping seems like a waste of time. I get that it’s what we’re “supposed to do”. I get that it’s “Biblical”. But, where I am right now, I’m fine with not knowing anything until I know everything. 

Wow. That’s dark. Didn’t really realize it till I reread it. Sorry guys.

And I get it, people don’t know what to say. So they go to the clichés. “Have faith”. “Think positive”. “It’ll be alright”. And they mean the best things of them. They MEAN them. But to me. That’s a period. The end of the conversation. To me, that’s where you’re dismissing the last two and a half years of my life and there’s no where to go in the conversation from there. It’s saying to me that if I don’t have faith, if I’m not thinking positive, if i don’t feel like it’ll be alright, you don’t want to hear about it. Which, at this point, is fine. I realize not everyone is comfortable with the uncomfortable conversations that come along with our life. And sometimes, I don't have the energy to talk about it anyway, so I take those phrases and use them as a welcome to change the subject, because that’s what both of us want in the moment. 

This is definitely not to say that we don’t have the people in our lives invested. Like, in the dirt and mud with us. The lowest of lows and the celebrations. You’re there. In NYC and back home and all over. And there’s a lot of you. I see you. We see you. And we appreciate you. 

Sorry for the delay in posting. It's equally Colton's and my fault due to our need of keeping our social media on point.

But regardless, the news we got today way far better than we even imagined. The doctor told us that she could barely see anything left on the scan! Everything [EVERYTHING] has either shrunk or disappeared completely! So these new drugs are working!

We've had a few hiccups on the last two treatments. A few weeks ago when Colton went in for his 3rd out of 4th treatment, his liver function was up on his blood tests. They continued with treatment as normal that day, but had him come in two more times over the course of the week to be sure the counts didn't rise.

Then last Monday we went in for treatment and his liver count was so high the doctor didn't want to risk giving treatment. So we skipped it that day and he went back for two more blood tests this past week and scheduled his PET scan for today.

The PET scan showed that everything was getting smaller! It was amazing to celebrate with the doctor and see how elated she was about the news.

So... what's next?

Colton will go in for another blood test next week before we come home for a long Thanksgiving break. Then, once we return, he'll begin another 4 treatment cycle of the same drugs to hopefully kick this thing once and for all!