Updates

A very old, very beat up polaroid of the Cotton family

Updates will be listed in reverse chronological order; the most recent updates will be at the top of the page, while the earliest updates are at the bottom.

Peruse the diary of Nate's experiences for developments in his health, treatments, and life in general as we navigate the physical and emotional difficulties of brain cancer.

Apr 14: We are officially halfway through Nate's first round of treatment to fight against his glioblastoma!

*insert cheers*

Now that he's on a consistent schedule and medicine regime, he's feeling a lot better than he was when everything was fluctuating as they tried to land on his ideal treatment. Right now the biggest side effect he's dealing with is lethargy. He has a lack of energy that he's never had before, and it makes every little thing harder to accomplish. He says he's sick of having nothing to do and he's bored at home, but he also can't do as much as he used to be able to. He told us he misses having the "dad" role of being the guy who fixes and helps and makes it better. Personally, we think he's still crushing the dad role. Always caring about us, checking in, he puts us above him even when he's going through something so hard. He's still trying to keep us afloat. He's the best dad anyone could have, and we are so lucky to have been chosen by him and born of him, respectively.

He's seen some fluctuation in his weight, but that's likely due to the meds combined with the fasting. He is required to fast before some of his medications and treatments, which obviously throws the meal schedule out of whack, which can affect weight. The fasting is difficult because, after years of working as a certified arborist, Nate is used to waking up incredibly early. Like, the sun and the birds are still sleeping when he wakes up. He's awake for much longer in the morning than most of us, which makes fasting harder than if he were just sleeping through it. He's also dealing with some hair loss from the chemotherapy, but that's better than dealing with pain. Ultimately the side effects could be much worse.

We have had a pretty huge blow, though. After seeing the optometrist, Nate learned that he's lost half of the vision in his right eye, and a third of the vision in his left. His eyes are perfectly healthy, but the pressure in his brain is restricting the ability of his eyes to do their job. (Editor's note: this is not well explained, but I'm not a doctor. Trust me: brain pressure = less eyesight.) This means that he can no longer drive, which further limits his ability to get out of the house. Reading and writing take exponentially longer than they used to - and he was always the last in the house to read the newest Harry Potter book, so you know he's never been a speed reader. It's the cruelest irony that Nate has this cancer, because he's such an intelligent man, and so proud of his speaking and writing ability, and this is affecting all of those things. He also keeps missing things in his blind spot, which is frustrating. He said he no longer "looks" for things, he has to "scan" for them. The doctor's have said that if they can get the pressure in his brain to go down, his eyesight might return. 

Nate is staying as active as he can in the house, and does a lot of chores to satisfy that need to move. The doctor at Dana Farber asked if he was working out, and was impressed by the amount of exercise he is getting. The minimum they were hoping he would move around was three times a day for ten minutes each, but we all know Nate. He has a lot of energy to kill. He's also had a lot of visitors, which helps keep him busy and passes the time. It's bittersweet, because the reason for having these visitors is pretty awful, but he's seen a lot of friends and family of late. His father has come to visit a couple of times, and his cousin who lives in California. It's nice to see people who care about him, despite the reason.

Nate and his dad John, with their matching slacks and matching faces. 
(youngest chiming in, the cotton genetics are strong, trust me)

 

Right now, everything is working towards assessing the treatment. We are waiting to see what happens. After 56 years of life, Nate has learned not to stress about the things he can't affect, because it's wasted energy. 

"The problems that I have, I can't really do anything about, so why sweat them?"

(Editor's note: I'm sweating them. Drenched in sweat. Hopefully in 30 years I will learn to adopt dad's mindset.)

While we were discussing the past couple of weeks, Nate compared himself to a tree with dutch elm disease. Always trees with this guy, right? He said when a tree is diagnosed with dutch elm disease, first you have to cut the dead wood out. Then you inject the medicine to stop the disease, you feed the tree, and then you have to wait and see if it worked. There's no way to tell until the tree gets better or worse. That's where we're at right now. As Nate put it, "I don't care what the problem is, I just need to know the solution."

The official diagnosis right now is incurable, but treatable. (Editor's note: the difference between a terminal and incurable diagnosis is that if he's terminal, the insurance company won't pay for his treatment - why try to cure a dying man - but if he's incurable the insurance company will keep paying. The health insurance industry is a scam and a soul suck.)  It's something he'll live with for the rest of his life, but we keep fighting. He's held onto his good spirits about it all despite everything that's happened thus far. One of his oncology doctors actually asked if he could do a clog dance because he wears clogs to his treatment, which he was delighted by. His normal dance is the dance of the dying goose, not the clog dance, so he said no. But he stays motivated and fighting, and some days it feels like he's dragging us all with him, but we try to stay positive too. 

"When you start [life] you get two jars: one empty of experience and one full of luck. As you age, the experience gets full and the luck gets empty."

Once we gain the experience in finding which treatment works, the luck will jump in and help us fight.

Mar 24: Nate was set to begin his treatment on Monday, March 14, but of course nothing can go smoothly when it comes to this process. He received a phone call at around 10:00am that Monday, just four hours before his appointment was set to begin. He had already started fasting for the first hour before taking his chemotherapy pill when the call came in. His nurse at the radiation center informed him that his insurance company hadn't yet approved the procedures, so the hospital was unable to treat him that day. Evidently insurance companies take up to 15 days to confirm coverage of treatments, and the request had gone out 12 days ago, so it was still being processed. (Editor's Note: What I learned from this, personally, is that the health insurance industry is big fat scam — but I think I'm the jaded one in the family.) 

Sharon immediately got to work tracking down the insurance company and figuring out what exactly the delay was. It turned out that Nate's intake nurse had forgotten to mark his insurance request as "urgent," and apparently had only remembered to do so that Sunday. (Editor's Note: One would think that any insurance request that contains the words "radiation" or "cancer" might be automatically marked as urgent, but I, a humble community manager, couldn't possibly know how to streamline this convoluted system.) The insurance agent told Sharon that even urgent orders take up to 72 hours to process. The scariest thing about glioblastoma is that since it grows so rapidly every day counts. This was a tiny nightmare inside of our much larger nightmare. The insurance agent shared his personal story of having a family member deal with cancer, and told Sharon he would check on Nate's case every night and day until the clearance came through. Due to his tenacity on our behalf, and his empathy for our position, the insurance agent got Nate's insurance pushed through sooner than we expected. Nate was able to go in for his simulation appointment on Tuesday to do a dry run of what would become his everyday treatment routine. Wednesday was D-Day, the day his chemotherapy and radiation treatments officially began. It's a fairly quick process, and he said overall it was easy-peasy. Nate is incredibly brave and determined to push through this, and he refuses to be another number. 

One of three photos in the family group chat that provided us with a multi-cam view of Nate's experience

Nate has now completed 7 sessions of radiation therapy and 9 treatments into his chemotherapy. Nate says that he doesn't really see any side effects yet other than fatigue, but that could also a byproduct of him using his overworked brain. This whole process has been a roller coaster of emotion that is difficult to keep up with. The ups and downs are sickening, but we're trying to keep ourselves afloat. Nate is an absolute champion, staying steady through all of this, and ultimately, we are moving forward. The healing has begun.

Mar 16: For the first time since a family wedding in October, Jazz and her boyfriend Clark were able to fly in and visit Massachusetts to see Nate and the rest of the fam. Kenzie oh-so-graciously picked them up from the airport on Friday, March 11 and brought them back to Ipswich, where they spent the weekend. (Editor's Note: MacKenzie volunteered to pick Jazz up, because she was very excited to see her. They had a great car ride, and the editor is unclear why MacKenzie decided to be so snarky here.) They had some good family time and got to reconnect. MacKenzie dedicated most of the weekend to being at the family home as well, and she brought her boyfriend Rich and his daughter Raylee. It was nice to get us all under one roof again, playing card games and eating good food; you all know what the Cottons do. 

The whole crazy crew spending some quality time together

Nate was extremely happy to have both his girls home. We spent a fun hour at the grocery store, which might seem like a chore, but is secretly one of our favorite weekend activities. Market Basket, Nate is known to say, has the best music of any grocery store. It helps Nate to get him out of the house in short bursts, so he doesn't go completely insane staying at home. We had delicious food and some great local beer — though Nate did not partake, because alcohol would be detrimental to his treatment right now, and he's been staunch about quitting cold turkey — and some classic kitchen hangs. The kitchen has always been the heart of the Cotton home, and we spent a lot of time there as a group over the weekend. Despite everything, he was in better spirits than ever, and was eager to officially begin his treatment and start the process of healing. 

Our favorite place to chat, the kitchen! You can really see the family resemblance here, I think.

Before Jazz and Clark headed back to Texas on Tuesday morning, Jazz made it a point to take a family photo of the Cottons. It's the first one we've taken of the whole family in probably two decades. When we went looking for one last month, to put in the updates page, Sharon and Nate commented that a full family photo is rare for us. One of them was always taking the picture, and in the age before the smart phone, people had to make a conscious effort to have their photos taken. We were always having too much fun to get someone to take our picture. It's nice to finally have a recent one of all of us.

There are a lot of very silly pictures, but this one is where we look the most like us. All laughing.

On Tuesday, March 15, Jazz and Clark went back to their everyday lives. It was a bittersweet visit, because of the reason, but Jazz has made a commitment to go back home more often. She's also invited the whole family out to visit her in Austin, and most of them are pretty into the idea. Nate and Sharon will probably fly out in a couple of months. However, the joy of the long weekend was not yet over, as on Tuesday afternoon, Rich proposed to MacKenzie! He gave her the ring in front of her parents and his daughter, with a heartwarming speech, and she of course accepted. She has already started working on wedding planning. (Editor's Note: Jazz is unsure why Rich waited until she was out of the state to propose, since he was prepared all weekend and they had a private conversation about it. She absolutely "will not" hold a grudge about this.)

MacKenzie and Rich showing off her beautiful ring, officially engaged!!

It was a fantastic weekend, and everyone had a great time. It put Nate in a great mood to start his radiation and chemotherapy, which began the very next day — but that's a different update.

Mar 6: Nate made his first visit to the Dana Farber Cancer Institute this week. He was greeted by a trio of rubber ducks sitting atop the check-in sign, which we have obviously taken as a good omen. He was given a new regime of medication to take at home - all free at the Dana Farber pharmacy, gotta love that research hospital money - and he was put on a schedule of 7 chemo treatments and 5 radiation treatments weekly. Those treatments begin next week, after he takes two training courses on how to properly take chemotherapy and radiation. We're hoping he passes with a 4.0. He's also on antibiotics to improve his lung function and keep it consistent during treatment, and they gave him a new anti-seizure medication that, in clinical trials, has been shown to shrink tumors in animals. He's effectively an oversized lab rat in an unofficial clinical trial while still getting the anti-seizure benefits, but we'll take all the help we can get. Nate and Sharon (his wife, our mother, she who everyone knows) are very impressed with the quality of treatment they saw at Dana Farber. The staff is kind and knowledgable, and very excited to help Nate start his fight against cancer. 

Later in the week, Nate met with his radiation team to create the custom-molded mask he'll be wearing during his radiation treatments. After testing the machine out, he compared the radiation machine to an MRI, which we all know he's had a lot of. He was also able to look at the MRI of his brain to see where the tumor is located. His radiation doctor is straightforward and calm, with a good sense of humor, and radiation will take only 15 minutes a day - it'll take longer for him to drive to the hospital than it will to get the radiation treatment. Luckily he was referred to a closer hospital for radiation, so he won't have to make the trek into the city every day.

Overall, he's eager to begin treatment. His reading is improving every day, and using the computer is working his brain in a positive way. Radiation and chemo officially begin on the 14th, and we're all eagerly counting down the days until he starts. 

Lastly, we know updates have been slow to start off. Right now, not much is happening. We're just waiting for the real treatment to begin. It also takes some time to disseminate all the information we're getting between the Cotton family, especially since one of us lives in Texas, and it takes longer to process. This is really hard, and not all of us have Nate's positivity and outlook on life. If you want to stay on top of updates as we post them, please click the follow button at the top left. As always, we appreciate your love and support of our father, the best man we know.

Feb 22: After a week of (slightly grotesque) pictures of his head in the family group chat, Nate gets his staples removed. The doctor says his incision is healing nicely. Nate is in great spirits, and says he feels fantastic physically - the only negative is the whole cancer thing. He's started working around the house, and is so incredibly bored sitting at home all day. 

Feb 16: Lab results for the removed tissue come back, and we learn that the tumor was malignant. Doctors go on to explain that Nate is being diagnosed with glioblastoma, an aggressive form of brain cancer.

Lahey Burlington refers him to the Dana Farber Cancer Institute. They call back within half an hour, excited at the prospect of treating glioblastoma at such an early stage, in someone as young as Nate. This feels very morbid to me, but I'm grateful that he's getting the best treatment available.

Feb 8: Nate has a craniotomy to remove the larger of the two tumors. Surgery is very successful, and with the removal of the tumor the pressure on his brain lessens considerably, and the mini seizures decrease in frequency. The removed tissue is sent to the lab for testing.

Jan 27, 2022: Nate is admitted to Lahey Hospital after suffering a seizure at home. He is held for observation, and not allowed any visitors because he also tested positive for COVID (a spicy addition to an already troubling situation!) We will eventually learn that Nate has two tumors on his brain that are affecting his speech and eyesight, and are putting pressure on his brain.

Nate and Sharon, our mom and dad, before this whole mess began.