#memorialsloan

[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. 

[thecleanbedroom]

#NationalNonProfitDay We are thankful for the work done by non profit organizations, but especially glad to partner with #memorialsloan in their work to fight cancer! http://amp.gs/PJfX #cancerresearch

[krisartsee]

Gorgeous view at #memorialsloan #NYC

[corderoj05]

This is the #PetScan test I am going into.....I am at #MemorialSloan KetteringCanerCenter Friday Sept. 20,2013 getting my #Nuclear #Medicine #PET #Scan #This sucks!!!!!!!!!!!!!!!!!!!!! (at Cancer Center)

[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]

Not Backing Down

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.

We’ll keep everyone posted on when we hear from insurance. Right now we have an appointment for the next two Wednesdays for if/when we get approval. Keep the prayers and good vibes going, it’s working, and we’re not giving up. 

[coltonscure]

No News = Good News

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. 

Check out their website here, or do me one better and see if there’s an event close to you and get involved! 

[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.

[thecleanbedroom]

The work of this cancer center is phenomenal; we'd love to see this disease eradicated. #memorialsloan #cancerresearch http://amp.gs/eaMe

[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]

Radiation... and other things

Hey everyone- it's Colton! I've pretty much lost my voice, so it makes sense for me to take up the reigns and write the update since it's a still-functional form of communication for me!

So it's been a minute since our last update. I got started with radiation and it just became the daily grind. Nothing exciting was happening so we kind of waited to blog until the next pivot in our journey.

So here we are- I have one last radiation treatment today at 2:20pm. Then this leg of the journey is done and we move onto immunotherapy in the coming weeks. My joints have not shown radical improvements and I'm still in a wheelchair or on crutches- but this is mainly because, even though radiation fixes these bone masses, it's also irritating and causing swelling of its own. Things kind of have to get worse before they get better. The doctors and I are confident that the minor improvements will become major improvements in the weeks following the end of radiation. The radiation will still be working and wearing off up to three weeks after the treatment ceases. So, of course we're bummed things aren't immediate- but we're excited for what's to come and the healing we're going to see in my joints.

Speaking of radiation; everyone tends to ask about the process and if it's painful or uncomfortable and how it works. Last week I got permission from the press department at the hospital to film a session of treatment! I just want you all to take comfort knowing it's essentially painless and a fairly quick process. We'll post a video with that below.

So what's next? Well, we're in the generous housing accommodations we've been blessed with until the 27th- and currently are hunting for some temporary furnished housing to rent close to where immunotherapy will be taking place. I know we spoke briefly before about the possibility of free housing from the American Cancer Society- but I simply do not qualify, and I count myself blessed to not be able to qualify based on some of the requirements of our situation. We're on a tough journey, but looking through all the resources and paperwork, I'm always reminded it could be so much worse and we are SO blessed.

Thanks to working right up until my diagnosis of recurrence and all the generosity from friends, family, and people we have yet to meet- we luckily don't have to stress financially about the housing situation. The hospital is also in a section of Manhattan where you get a little more square feet for your dollar. Everything has just lined up and doors have been opened, so I have no doubts about the ease in which we will transition into this next phase of treatment.

Immunotherapy is going to be the next phase of treatment and though "unlikely" to work- it can save my life and change my biological destiny. I believe science along with faith is providing a path to radical remission and healing.

I will say, I get frustrated being far from home for such a stretch of time- but I want to give a shoutout to the hospital and it’s staff for reminding me constantly by their actions and kindness, that we’re so blessed to be in such good hands.

We’re here for a purpose and I think it’s bigger than my disease. We may be here for only a short season in the big picture, but there’s purpose even in the small things.

So here’s some specific things to be praying for with us:

⁃Housing :: That we are placed in a location close to the hospital

⁃Pain in shoulder & knee :: Just relief as I start dosing down on pain killers

⁃Self Control :: As I am obedient to my body to feed it things that prosper it and nourish it, not destroy it.

⁃Energy :: Not “working” for a bit just makes me kind of stagnant and complacent, I need to shake that. 

⁃My voice :: I can talk, but it's down to a whisper, and it may be related to irritation from the disease. Pray for relaxation of my vocal cords and throat so that my voice can be restored.

⁃Confidence :: The “odds” don’t inspire confidence in healing, but my confidence in defying those odds must grow

⁃Joy :: For the sake of our marriage and the people we encounter, let us not lose or waiver in joy.

⁃Walking :: As the radiation wears off and swelling decreases, pray I get back to walking 100% and my joints and tendons are relaxed and ready

Thank you all for the constant prayers, we see them being answered in major ways. For those that are sending us good vibes, we feel those too- and we love you. Words cannot express how much gratitude we have in our hearts for the generosity that has been displayed to us in such a crappy situation. Thank you is only a series of words that do not even begin to tell the story of what it feels like to be so very loved.

ALSO: There is a fundraiser back home in KY for those of you that would like to help us out by eating some great food. A restaurant (Dominic's Italian Country Restaurant) will be hosting the fundraiser for us.  They will be donating 20% of your purchase. I hope you can make it! Thanks to Dominic’s for being so generous to us and our family. 

Here’s the Facebook event: https://www.facebook.com/events/1529943987301161/

“And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.”

[krisartsee]

I love the balcony at #memorialsloan 15th floor had arts and crafts, pianos, pool tables...its awesome

[corderoj05]

This is the #PetScan test I am going into.....I am at #MemorialSloan KetteringCanerCenter Friday Sept. 20,2013 getting my #Nuclear #Medicine #PET #Scan #This sucks!!!!!!!!!!!!!!!!!!!!! (at Cancer Center)

[corderoj05]

Done with drinking this shit!!!!!!This is the #PetScan test I am going into.....I am at #MemorialSloan KetteringCanerCenter Friday Sept. 20,2013 getting my #Nuclear #Medicine #PET #Scan #This sucks!!!!!!!!!!!!!!!!!!!!! (at Cancer Center)

[corderoj05]

This is the #PetScan test I am going into.....I am at #MemorialSloan KetteringCanerCenter Friday Sept. 20,2013 getting my #Nuclear #Medicine #PET #Scan #This sucks!!!!!!!!!!!!!!!!!!!!! (at Cancer Center)

[corderoj05]

Have to drink this shit with in a hour before the #test!!!! I am at #MemorialSloan KetteringCanerCenter Friday Sept. 20,2013 getting my #Nuclear #Medicine #PET #Scan #This sucks!!!!!!!!!!!!!!!!!!!!! (at Memorial Sloan-Kettering Cancer Center: Integrative Medecine Center)