#ColtonsCure

Here I am sitting in my treatment chair overlooking midtown Manhattan - getting juiced with my bi-weekly $8k drug; which has been unprecedentedly covered by my insurance for the past year. I turn 26 in December, which will kick me off of my parents insurance… So I’ve been scrambling to find a solution to keep from having to pay $16,000 out of pocket every month–without much luck.

A couple months back, my mom and I started applying for financial assistance for a past balance with the hospital (some miscellaneous costs not covered by insurance) that totaled just under $6k… We had to jump through so many hoops; tracking down bank statements from before we moved to NYC that have since been moved around or closed. So much was up in the air, I was sure we’d still be stuck paying the $6k, which, in reality is a drop in the bucket of what’s been covered… but last week I received a letter about the verdict of our request:

“We are pleased to inform you” the letter began… “You’re no longer responsible for your remaining balance with the hospital…” *sigh of relief* *wipes brow*

But there were still a couple more pages:

“Along with the prior balance, we have decided you’re not responsible for any hospital or physician charges incurred from 8/01/2017-8/01/2018…”

So, I’m covered.

This news came after a few weeks of feeling purposeless in our geographical location; Emily and I had just renewed our lease and honestly didn’t feel like we had any reason to stick around since I’m getting ‘better’– this letter changed that.

Along with a renewed sense of purpose and (some) freedom, we had a scan to ‘look forward’ to this week…

“It’s GOOD” my doc said as she burst in the exam room this morning.

Not only is the last remaining tumor less active– it’s physically shrunk. It’s highly likely to just be resolving scar tissue at this point (post radiation).

All of my markers and blood work are congruent of a person with no cancer in their body. Based on these results, there’s no evidence of active disease anywhere in my body.

At this point, we’re in uncharted territory– moving forward: we’re just going to keep up the immunotherapy, especially since it’s all covered, and I’m thriving on it.  

My oncologist is already working on trials for new drugs to come out for potential use within the next year, should I need them.

I know that no one is promised tomorrow… but I’ll be damned if I let that keep me from wanting a future.

I hope our story is and continues to be an answer to prayer and an encouragement to everyone who has come alongside us for the past three years. Literally, I love every single one of you… we need to rent a convention center and have a party.

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. 

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???

As some of you know, Thursday we got a call from MSK letting us know that the biopsy would be moved from Friday to Monday. So Colton got the tumor biopsied on Monday. He was meant to resume treatment today to finish this thing off once and for all, but we received a call yesterday that insurance still has not given approval for the extra drug that he needs.

Despite that less-than-thrilling news, Colton’s oncologist did tell us today that his biopsy came back that it’s the same cancer that everything else she’s been treating and not some more matured, mutated cancer. So, while it’s a bummer there’s a new, fairly large spot, it’s the only one, and it can be treated with the same drugs that took care of the other cancer.

For those just joining us and are interested in the nitty gritty details, Colton has been on a treatment called Nivolumab and the drug we’re waiting to get approved is Ipilimumab. The Ipi primes the immune system and unmasks the cancer for the Nivo to attack and destroy it. He was on this regimen before and they took him off the Ipi because everything was working and that drug was raising his liver function to an unhealthy level, which is a side effect of it, but also meaning that it’s making his immune system to work overtime and getting the job done.

So all that to say, we’re now waiting on insurance to jump in and cover it once again. We met with his oncologist today and signed some papers just in case insurance denies it. The papers were for a scholarship program that could cover the drug if insurance doesn’t follow through.

Just because she has to, she mentioned the option of going back to chemotherapy. Before we even answered she knew that we don’t consider that as an option. When we’ve been brought this far by indescribable assurance, we can’t back down so easily.

Now we wait.

On another note, I was able to write a guest pots for a friend’s blog that was put up today. It’s a summary of how Colton and I met and how we’ve made it this far. You can read that post HERE. 

I also wanted to give another shameless plug to the Cycle for Survival event that’s taking place next Friday, February 24th. If anyone is in the NYC area, let me know, we’d love to have you part of the team! Or if you’d like to know what it’s all about or donate to help towards cancer research, check it out HERE.

4 stages later, 2 steps forward, 1 step back.

So here’s the thing about news–it’s all about your reaction. Today we received some news that honestly, just sucks. Just this past November I had a PET scan that told us everything was working and that EVERYTHING had shrunk or disappeared. We’re talking tumors in my lungs and bones… I’m not sure you can be prepared for that great of news. It was honestly hard to swallow at first.

Thanksgiving came and went, padded with gratitude and joy; followed by Christmas– It was such a full season of complete joy.

After we got that good news, my treatment was simplified down to only one of the drugs I had been on. I’ve been on the ‘simple’ version of my treatment since November. This past Monday (Feb. 6th) I had a follow up PET scan to check on my progress.

Here’s where the “one step back” happens:

Everything that disappeared is STILL gone… But, there’s now a fairly large (golfball sized) tumor in my groin/upper-thigh/lymph nodes. It’s very close to the surface, so we’re doing a biopsy on Friday (Feb. 10th) to get a handle on exactly what’s going on.

We’re bringing back the drug we dropped. Insurance approved it again. So back to fighting.

Discouraged. Frustrated. Angry. Cheated– Not fearful, not anxious, not timid. It’s hard to be scared of something that you’ve kicked out of your house a few times in a row now… BUT it is an unwelcome guest.

Some silver linings: I’m getting physical therapy and some lymph-specific treatment to help stretch out my leg and promote some healthy circulation. This is something I should've been doing from day 001.

Also, still NO cancer in my:

Bones,

Lungs,

Liver,

Stomach,

Bladder,

Throat,

Neck,

Brain,

Blood,

Pancreas,

Colon,

or my heart.

It’s almost like something is actually working. To those praying and vibing with us- keep it up.

So here we are; I’m still living with stage IV cancer. I’m still fighting stage IV cancer. I’m still winning.

Just wanted to give a quick non-update, update. Since Colton’s last scan, everything has been smooth sailing. He’s been receiving his usual treatment every other week and we’ve been attempting to get a normal life/work flow down. 

Colton’s been able to get some work on a few projects for a few different clients while I’ve been elbows deep in the beverage game here. 

We were able to go home for Thanksgiving and Christmas which was a much-needed time to spend with family and friends. 

Colton’s next PET scan is scheduled for a week from today, Monday, February 6th and we will be getting the results that Wednesday, the 8th. Prayers for peace of mind and great results would be much appreciated and coveted. We tend to be unknowingly a bit short-tempered toward each other days leading up to these big dates. 

Colton and I are excited about an event coming up called “Cycle For Survival”. It’s a fundraiser for Memorial Sloan Kettering Cancer Center where people raise money to cycle for four hours and all the money goes straight to the research done by MSKCC. Without these types of events, it’s likely that the drug Colton is on would not be available to him. The cycling is done on stationary bikes and lead by a cycling instructor from Equinox. 

During this event, Colton and I will not only be cycling, but Colton also has the opportunity to have a small amount of time to share some inspiration with those participating. 

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!

Ok ok... Colton has commandeered the blog over the last... errrr... month or so. So I thought I’d take a stab at this one. 

The last thing that was posted was Colton’s video covering results from his most recent PET scan. Being removed from the situation a little bit, and talking about the results given, as well as meeting with the orthopedic surgeon this past week and having him re-read the results to us, we’re feeling a bit more at peace. While the results obviously didn’t change, we realized that the oncologist who does the infusions was disappointed, hence, why we kinda had a bummer of a day that day. More than anything, she seemed confused by the results. She was thrown off that some things grew, some things shrunk, and some things stayed the same. She’s used to black and white answers on scans, not grey. So we came to the conclusion that maybe she was just discouraged that she couldn’t give us a straight answer. 

So after speaking with the orthopedic surgeon, we felt a bit more at ease. Yeah, the results still suck and aren’t what we were hoping and praying for, but it’s hard for us to believe that if the immunotherapy didn’t work AT ALL over the last 3.5 months that Colton would be in worse shape. So moving forward, we’re still waiting to hear back from insurance to see if they’ll pick up the bill of adding a second immunotherapy treatment to the one Colton’s already receiving. The oncologist seemed to think it was unlikely, but that’s also what she said about the first infusion meds, so we’re just swinging for the fences. We’re not accepting “palliative chemo is the only option” as an answer. At this point, we’re moving forward full force with more holistic options in addition to the immunotherapy already being received. 

Since the PET scan, Colton and I have been praying hard about what to do with our living situation. We were obviously hoping that at this point, we’d have an “end in sight” since our sublease is up at the end of August. A lot of anxiety has been surrounding these appointments for both of us, and while we would like to say we fully trust God in every circumstance, every moment of the day, and He has taken all fear from us, we’re also human and fall into that anxiety and fear more regularly than we’d like to admit. So as we waited for the results, we just started talking about what would help ease some of this anxiety. And we decided to look for an apartment with a year lease. We prayed about it, and really felt like this is something we needed to do. We felt like otherwise, we were living from scan-to-scan and, in those moments, we’re giving Satan a stronghold in our lives that he doesn’t deserve. We felt like committing a year to New York is a literal way of stepping out on faith because Lord knows I have no idea how I’m going to make it through this winter. 

So all that to say... we found an apartment. The first day we went to look at places. The fourth place we looked at. We filled out the application right there and then and are scheduled to sign the lease tomorrow. It’s exactly what we need. Small, one bedroom, DISHWASHER in unit, WASHER/DRYER in unit, rooftop with a freaking little adorable garden! And under budget of what we were looking for! 

As we move forward in this venture and give New York ourselves for a year, please pray with us that we also continue to seek out God during this time as we fully believe that we are not only here for treatment. As we’ve already been poured into here by so many great people, we are looking forward to serving others and building more meaningful relationships. 

Speaking of relationships....

HAPPY 2 YEAR ANNIVERSARY TO US!

We decided since we haven’t been able to take any vacations since our honeymoon, that we were overdue. Sooooo... WE’RE GOING TO THE BAHAMAS! Photos to come soon...

Before our vacation however, we’ll be coming home for a couple days as Colton speaks at Crossroad’s Unpolished, “Joy In The Journey”, on August 8th. Here is the Facebook page with more info regarding that night if you’d like to come!