#coltonscured

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. 

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.

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.