#coltonscure

[coltonscure]

Another Day Another PET

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. 

But anyway. There’s where we are right now. I’ll post another update tomorrow with the results of the scan from today. Sorry for such the depressing post. But I don’t use this as a place where I repost motivational quotes and stuff. This is my life and a way that helps me process some of the stuff we’re going through that I ignore in my subconscious sometimes daily. So you guys get to see it all here. 

[coltonw]

Wrote this phrase on a piece of paper almost 3 years ago. These words didn't mean much to me then- but in current circumstance, is what I'm crying out to God for.

[coltonscure]

PET scans and Puppies

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???

Anyway, thanks for keeping us in your prayers. Please pray for patience, peace, and decision making skills (or even better, the best decision to be made for us so we don’t have to). Love you guys! Thanks for putting up with my word vomit.

[coltonscure]

Uncharted Territory

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.

[coltonscure]

After years of fighting cancer, I got my first great scan in November of 2016–I wrote this stream of consciousness narrative; this is honestly closest to how I felt in the moment... I'm still fighting, and I'm still winning.

[coltonscure]

Resolved. That's the term my doctor used today describing a lot of the involved lymph-nodes. Literally all that remains is shrinking or gone. The lymph-nodes that surrounded the last remaining tumor are gone and the tumor itself is shrinking with no new spots appearing. This isn't remission but it is improvement. Still fighting. Still winning. Feeling great about the news today; nothing short of thankful to be alive and on my way to remission and complete health. We plan to continue with maintenance treatment here in NYC for the foreseeable future — we're not "stuck" here, but it's the best place for us to be... for now.

[coltonscure]

Fighting cancer has been a very cyclical journey; I go through rotations of pain, doubt, progress, and hope on a pretty yearly basis. February marked the start of another round of those emotions. Cancer recurred in some lymph nodes in my hip area causing even more problems with my already bum leg. We picked back up with my chemical treatment—but at my last appointment it became apparent radiation would be our best bet to partner with to control and eliminate the remaining diseased areas. (Emily wrote a blog about some of this) — Long and short: I start 5 days of concentrated hi-dose radiation next week. It's bittersweet to be presented with solutions—but solutions for a problem you thought was already solved twice before. I say all this to ask for prayer and vibes as I mentally feel like I'm starting over. I know there's obvious progress that I've maintained as I've fought this fight; I'm just winded and feel like I got a little sock to the gut. Pray for hope for Emily and I; belief that the third time is the charm, and this is just another merit badge to wear with pride as we share the hope in our story. #coltonscure #coltonscureD 📸: @masonauguste (neon king) (at Midtown Manhattan)

[coltonscure]

Good News

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!

We're so so glad to finally be able to share encouraging news with everyone who has been keeping us in their thoughts and prayers over the last 8 or so months (and even longer if you've been following our story from the beginning). Be encouraged that your prayers were not in vein, they did not go unheard, and we did not go unencouraged.... I don't think that's a word...

[coltonscure]

For those of you who couldn't make it this weekend to Christ Chapel, below is the video from the live stream of Colton speaking. He begins around 53 minutes, but you should watch the whole thing :) Thanks to all our friends and family for all your prayers and support! It's always hard to leave home after such a great weekend filled with the people we love. But we continue to remind ourselves why we're on this journey. http://livestream.com/accounts/6940440/events/6198539/videos/136878653

[coltonscure]

Committing to being 600+ miles away from family has been a hard decision- and some days I doubt were supposed to be here. Today we got the call from our insurance company that they are covering the new immunotherapy drugs that my oncologist was convinced would NOT be covered. Thankful for days like this that affirm the hard choices we have to make. Please celebrate with us today wherever you are, as your prayers are being answered and your good vibes have not been returned void. God is good. #coltonscure (at New York, New York)

[coltonscure]

Video on my Facebook about results today. Will post to the blog ASAP. #coltonscure https://www.facebook.com/coltonwilliams/videos/10154496165856062/ (at New York, New York)

[coltonscure]

I have a PET scan Monday morning. This scan will confirm or deny the effectiveness the past three months of treatment have had on my recurrence. I'm scared. I'm nervous. I'm anxious. But I'm human- I'm bound to have those emotions. I'm bound to cling to this world with my fingernails. I don't know what's been happening inside of my physical body the past three months- but I can for a fact speak to the spiritual growth that has happened inside of me. Obviously I'm clinging to the prayers of my loved ones and the promises I believe are on my life- but the flesh is so subject to fear. So if you pray, I ask that you pray for boldness and a absolute denial of fear. If you don't, I ask that you still say a prayer for me, whatever that looks like for you. I came to this city in a wheelchair, yesterday I did the laundry which was down three flights of stairs. Two loads of laundry to be exact. Prayer changes things. I didn't come into this life to throw in the towel. #cancersucks #coltonscure #coltonscureD (at New York, New York)

[coltonscure]

Today is my last immunotherapy before we scan to see if it works. Pray for a supernatural atomic bomb of healthy cells to wipe out any cancer cell in my body. Even if you're not a praying type, just visualize with me today or meditate on the resolution of my health. I'm nervous and anxious about the change of cycles but with improvements and provisions- I have no excuse to live in fear or doubt. Thank you all for your thoughts and prayers, really... They make all the difference on my bad days when I feel weak. I love you all. My appointment will be from 9:30-10:30 EST today, so if you wanna pray, meditate or whatever- that's a good time if you're free ☺️ #coltonscure (at Memorial Sloan Kettering Cancer Center - 53rd St.)

[coltonscure]

Break a leg! (or don’t)

Hey, it’s Colton again, so pardon the lack of blogging finesse. We last left you with the prospects of knee surgery and prayer requests for relieved pain.

Well, today I went in for my third immunotherapy treatment, followed by a follow-up appointment to do pre-surgery testing with the orthopedic surgeon who would be doing the surgery on my knee next week.

When I woke up this morning, I felt different- not just because my mom was in town, but I felt… better? We left the house and instead of crutches I just opted for my cane.

I’ve also been making it through the night without painkillers. My leg has found some peace and comfort in the evenings. I actually feel like I have been able to rest.

Before my treatment we met with my oncologist to just check in. I had lost a couple pounds and we were really discouraged. But when we met with our doctor, she was encouraged by how great my voice sounded. Literally three weeks before she was worried I would wake up in the middle of the night and not be able to breathe if my vocal cords failed me- but now she was excited and optimistic about the recovery from the vocal procedure. Our oncologist was also a bit on the fence about the surgery because she saw me hustling around on the cane, and just didn’t know if it was worth getting my leg cut open. It really came down to a decision of comfort and improvement. She said she would support whatever decision we made.

So after treatment, we walked the 7 blocks to the orthopedic oncologist’s appointment (well, we stopped for coffee on the way). I was hustling, and my leg was feeling better than it had in months. I still don't have my full range of motion, but I felt I was moving at a “New Yorker’s pace” between appointments.

At our orthopedic appointment (the bone doctor) we met with the nurse initially and discussed how we felt I had improved, even if just in comfort and lack of pain. The nurse agreed that this kind of made it a tough decision to decide whether or not to move forward with surgery. On one hand, the immunotherapy could be kicking in and the cancer is responding, on the other hand, even if that’s the case, I could still need the surgery later because of scar tissue etc. Basically we were stuck and stressed out just wanting to have someone make the decision for us. We both agreed that God was going to have his way whatever we decided, but in the end, we had to make a decision… and we have trouble deciding what to eat for dinner. Finally the doc came in and he seemed ecstatic. The nurse had shared our improvements with him in the hall before he entered, and he said he high-fived her because, as sad as it is, improvement is not what he was expecting. The reality is, as great of an idea as immunotherapy is, at this point, the statistics of it working still aren’t awesome. It’s still being tested and improved every day. So we talked through all the options again and he said, “As much as I love doing surgery and playing god, I would hold off based on the response you seem to be having to treatment. If I would’ve seen you like this two weeks ago, I wouldn’t have recommended surgery…”

So there it is- I’m not doing surgery. I’m going to let treatment work it out and stay active and keep improving, in Jesus’ name.

If it was just my leg improving it would be one thing, but my voice is improving, and ALSO, there was a mass that I noticed and was not really sharing with anyone on my Perineum (by my private parts) and it had me stressed out, but I had been praying over it constantly. It had grown and changed shapes over the course of a few weeks. BUT TODAY after treatment I went to the restroom and as I was finishing up, I realized it had completely shrunk and was gone. I don’t have scans to ‘prove’ anything- but my body is responding to treatment and prayer. God is good and I am SO thankful that I have been promised a future and a family. I will not be robbed of my destiny. To God be the glory for my response and healing to come.

[coltonscure]

Playing Catch-Up

Oh hey there guys... 

Let me see if i remember how to do this blogging thing...

The last month has been a little all over the place. As you may know (or not. I can’t remember what I’ve told to who anymore), we stayed in an apartment of a lovely family for our first month here while they were traveling. From there, we stayed in Long Island for two weeks with a friend I went to high school with (shout out to Heather and Bryce), then came back into the city to stay in a hotel for 5 days while Colton received his next infusion and we waited for our next sublease to be ready. AAANNNNNDDDD NOWWWW we’re in a two bedroom apartment that we’ll get to stay in until the end of August! It’s in a cute little neighborhood called Tudor City, has plenty of room to host family when they come up, and is a mile from my job. 

Oh yeah, I got a job. So that’s pretty cool. If you care anything about details on that, continue reading, but if you just want to get to pertinent details of the blog, feel free to skip the next paragraph.

Here’s what went down: I opened up Instagram one day, as most do, and I saw that little orange comment bubble pop up on the bottom right hand corner of my screen, I click on it, and Emily Carabello mentioned me in the comment section of a post about this shop in Midtown hiring. Sure enough, the manager saw that she tagged me and went to my Instagram, commented on one of my photos of a latte and asked me to come in for an interview. I was nervous about interviewing anywhere, hence, why I hadn’t applied anywhere yet. I was afraid that no one would hire me if I told them why I was there, the amount of appointments I’d have to take off for, and how I literally couldn’t let them know how long I’d be working for them for. But I sat down at our interview, and he already knew all that from my Instagram posts. He knew why we were in NYC, he knew what was going on, and approached the whole thing in a way where I could be forthcoming and didn’t have to feel like I was having to deceive anyone to get a job. So yeah, I’ve been there almost a month now and absolutely love it. I’m so thankful that God threw that at me when He did. 

Now... back to our scheduled programming...

Now that we’re in our semi-permanent (whatever that word means anymore) apartment, we’re just trying to settle in. Colton has now had two infusions of his immunotherapy treatment with his third one being next Wednesday, June 1st. We had an appointment with the orthopedic oncologist about Colton’s leg. They took x-rays and went over them with us and came to the conclusion that we can do one of two things: 1. Sit back, wait, hope, and pray that the immunotherapy kicks in enough to heal the leg and the disease in the leg which, even if/when it does, we won’t know how long that would be and what else it would take for Colton to be comfortable walking on it. or 2. Have a modified knee replacement surgery. This is where they would take out the diseased part of his femur and knee and replace it with titanium and plastic. Crazy right? He’d be in the hospital for 5-7 days, but would be up doing physical therapy the day after surgery. Expected to be on a cane or crutch in two weeks, and then completely walking in a month. 

That’s a lot of new info, so here’s a few FAQ’s:

Q. Can he just do physical therapy right now to help his leg heal? A. No, the doctor doesn’t want him to be doing any strenuous activity because he doesn’t believe the bone is strong enough to handle it.

Q. So would Colton be like a bionic man with a metal leg? A. No. The metal will be inside his leg. His lower leg is still fine and his muscles don’t have any disease and will stay intact. But he would probably get a cool ID card or something he’d have to carry with him just in case.

Q. Why not wait and see if immunotherapy kicks in? A. Colton will have a scan to check if the immunotherapy is working after his fourth infusion (June 22nd). Depending on what the results are, they may have to switch medications and go back to traditional chemotherapy. If they do that, he will not qualify for surgery because the chemo takes your immune system and beats it to a pulp and there is a greater risk of infection at that point.

I’m sure there’s more questions that you have, but that’s all I can think of for now.

We left the appointment with just a simple “we’ll think about it”. The orthopedic doctor was going to talk to Colton’s immunotherapy oncologist and see if she agreed with him and had any additional thoughts on surgery. We prayed about it and told God that if Colton was meant to have the surgery, all of his doctors would have to be unanimous, because we had no idea. So yesterday we received a call that everything was a “go” and that everyone was on the same page. Next Wednesday, June 1st, when we go in for Colton’s third infusion, he will also have pre-surgery testing done to make sure he qualifies for the surgery (blood work, EKG, etc.). And then the surgery is scheduled for the week after, Wednesday, June 8th.

Well.... I think that’s everything.

I’ll wrap this post up with some more prayer requests: - Peace. With our decision to move forward with surgery. With treatments. With day-to-day living.  - Miracles. For physical healing in Colton’s body that will amaze everyone. Doctors. Nurses. Us, although it shouldn’t amaze us, because our God is freaking BOSS.  - Spiritual Strength. In every aspect. For the energy to pray when neither of us feel like it or assume “God already knows”. For the strength to encourage each other as husband and wife when all we want to do is crawl up in separate corners of the room and just cry. - Anxiety. Not just in the medical aspect. I get anxiety every time we consider leaving the apartment just thinking about how we’re going to get there, if there’s going to be traffic, are we taking a cab, the subway (cue more anxiety), walking? 

Thank you so much to those who have continued to keep us in your prayers during our “blog hiatus” and for understanding when this is the last thing on our minds. Just know, we appreciate and feel all of the prayers and encouragement from all different parts of the country and the world and we believe that they’re the reason we’re still standing today.

For anyone who has previously asked for our address and I told you to wait to send anything until we’re in our next place since we’ve been moving around a lot, feel free to message me and I can get it to you now!

We’ve loved all the cards and notes from everyone! It’s been fun to see handmade cards from kids from my alma mater and hearing from people we haven’t heard from in years.

Enjoy this photo of how much Colton has helped on this blog. 

[coltonscure]

Just a typical Tuesday. #coltonscure (at Tudor City Place)