Hold tight. The emotional roller coaster has officially left the station. I’ve been standing in line ever since getting my ticket to ride at my diagnosis. I tried letting the universe know that I’m not tall enough to ride this ride, but apparently the rules are somewhat lax around here.
Through these first series of ups-and-downs and twists-and-turns, I’m trying hard to keep my hands off the bar, up high in the air. Finding some sort of freedom in the lack of control. Embracing play comes pretty easy for me, so I’m doing my best to smile, laugh and take in the utter silliness of it all. But despite my best efforts I’ve had my hands shoot back down to the bar more than a few times. Gripping with white knuckles, eyes closed, anxiously anticipating the what’s around the next bend.
Luckily, I’m able to roam around the grounds freely, looking at the wide variety of rides – ones that look fun and others that I never want to set foot on. The toughest part? Figuring out how to get my mind to stop focusing on the name of this theme park – CancerLand®. At some point in every day, my brain shouts at me like a carnival barker, reminding me where I’m at. If anyone is interested in a rebranding project for this place, give me a call.
Anyway, here’s some of the rides I’ve been checking out over the last few weeks, in no particular order.
We took a family trip to Houston, TX to see one of Keagan’s favorite bands, Coheed and Cambria, at the House of Blues as part of his 16th birthday present. Don’t let Jenny fool you into thinking that was the only reason for the trip though. Foxing, one of her favorite bands, was the opener. We had a great time, hanging on the edge of the Moshpit, taking in local cuisine and doing our best t-rex impressions at the natural history museum (see opening photo). Oddly, for a city of 2.3 million, downtown is kind of like a ghost town on the weekend.
While we were there, we went to MD Anderson, a cancer treatment and research center that is one of the original three comprehensive cancer centers in the United States. This place is massive and pretty amazing. It sits right in the center of what a Lyft driver described as a “second downtown made of hospitals”, quite a site to see.
We visited the library, where anyone, patient or not can check out books, and have the librarians research and get access to articles typically reserved for medical professionals or locked away by fees. Incredible. We ate at the massive cafeteria that included an in-house Chic-fil-a, talked to the Gastroenterology department and took in the museum-quality display of history and research that’s taken place there.
It’s here I experienced my first real rollercoaster of feelings. We saw awe-inspiring work going on all around us, while also seeing our fair share of really sick people. The librarian was incredibly helpful, but we only found one mention of Carcinoid Syndrome in the entire place. A fragile balance of hope and sorrow swirled around in my brain the whole time we were there.
Our departure from Houston was not as enjoyable as we all ended up with a form of mild food poisoning on our last day. I seemed to get hit hardest and Jenny said I looked a lovely shade of gray most of the day as I ran back and fort to the airport bathrooms. We both came away with the same feeling that day – hopefully I’m never going to be at a point of being really sick.
I left Houston grateful that we have an internationally-recognized cancer center and doctors right in our backyard, but I’m glad to know there are other places out there should I ever need them.
Speaking of which, we received the long-awaited news that my Kaiser referral to Dr. Eric Liu was approved! As mentioned previously, Dr. Liu is one of the best hyper-specialists in what I have around. I’m so relieved that the referral went through as out-of-network coverage can be extremely difficult to get. Many thanks to Jen Furda for helping us navigate the complexities of the Kasier system and getting us in touch with the right people.
One of the best high-points came this weekend when we attended the American Advertising Federation awards – winning 13 awards with our amazing Design Rangers team. Eight silver Addys, 3 gold Addys, a people’s choice and a best-of-print award for the Visit Colorado Springs’ Crafts and Drafts Passport campaign.
To say I’m proud of our team and humbled by the recognition doesn’t even begin to sum up the way I feel. We had an amazing year and got to do some great work for some equally great clients. Jenny, Sam and Lindsay, you make my days bright and make me excited to come to work every day. As Seth Godin would say, let’s keep doing work that matters for people who care.
I’m going to step off the ride for a bit to get some sleep (11:20pm as I write this) and maybe pick up some cotton candy. Thanks to all of you for taking turns sitting in the seat next to me and throwing your hands up in the air. Like any good ride, it’s made better when you get to share it with someone.
Schell Shocked 
One day at a time, right? And you guys are soooo good at the good stuff. Next time you come up, remind me to take you to The Inventing Room for some bomb, albeit wacky, cotton candy. We’re all sending you guys so much love!
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Love, love, love your attitude, Christopher! I was speaking to a man who had Lou Gherig’s (sp?) Disease. He said the “best” thing about his diagnosis is that it makes all the stuff he usually worries/complains about on a daily basis seem so “silly” and he gave it all up! Reminds me of your great attitude. Thanks for sharing. It brightens my day and reminds me just how much we all have to be thankful for…but usually forget in the day-to-day of life.
Gwen and Brian Davis (pickleball friends of your Mom and Dad)
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Thanks for letting us go on the ride with you. I’ve had to be on more then one ride in my life and the truth is that the love we have grows stronger as the ride reaches its destination. The laughter I had with my Dad when he thought he was in the military barking orders at me. That type of love can not be charted, their is a special place in heaven where love lives. Love you with tears of joy
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Chris and family, sending you our love and prayers as you continue to fight for wellness!! I believe you are doing all the right things as far as seeking the best care possible and looking at all your options. Please know we think of you daily and are long distance supporters with love and prayer!!
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So proud of you & Jen, your accomplishments as good people in this life,
congrats on the Design Ranger awards. L❤️VE your mom’s favorite sister!
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Love your writing style and your ability to share! I hope the blog lifts your spirits even though I’m sure it is hard to write your feelings and put them out in the universe. We love you, keep up the strength and humor!
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Brilliant writing! And SO happy you got the referral! Hugs to you all.
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Thank you Jane – we’re really happy too! Thanks for reading and thanks for the hugs!
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I am a long time friend of your uncle John S. Like since about 1970 or so. Besides being retired after 50 years in nursing, I am serious about praying. Which is why John told me about you.
You are totally extraordinary. It is a privilege to follow you on this journey.
Blessings!
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Catherine, thank you so much for following along and for your continued prayers. I’m blessed to be surrounded by so much love and caring.
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Christopher, My name is Peggy Furlong and I grew up in Felton, Delaware. I have known Susie Shank forever. She gave me your info so that I might read your blog and contact you. My husband was diagnosed with carcinoid cancer in September 2017. He has had two surgeries to remove tumors and scar tissue (from the first surgery) with tumors. He has had a lot of the same treatments you have had, although with different names. He has had octreotide injections, like your lanreotide. He is currently on xermelo tablets and has had his second treatment of lutathera. His carcinoids present with chronic and sometimes uncontrollable diarrhea. He has lost almost 100 lbs in 2 years. He has never had any flushing. All of his carcinoids are in his intestines and his pelvic floor. He did have 3 or 4 in his lymph nodes when 12-15 were removed and tested. We have found your blog helpful, just knowing what you are going through. We are pleased that you seem to be able to continue with your life. Gary, however, can’t leave the house because of the chronic diarrhea. One question that we have for you, have you in any of your research, found a relationship between carcinoid syndrome and dioxin exposure? Gary is a Vietnam vet and was exposed to agent orange, a dioxin. We have been trying to find if there is a relationship but haven’t been able to find anything. Now that we know about you, thanks to Susie and Steve, we will keep you and your family in our prayers. We pray that you continue to live a full and productive life. Because Gary has lost so much weight, he will be going on an IV tunnel catheter this week for TPN nutrition treatment to try to get his body to absorb some nutrients. Like I asked before, if you have found any relationship to carcinoid syndrome and dioxins, we would appreciate hearing about it.
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Hi Peggy, Sue said that you might be reaching out to me. I’m sorry to hear about Gary’s weight loss and experience. I know that chronic diarrhea can be one of the biggest issues with NET tumors, especially if they are in the intestines and mid-gut. I have one in my intestine and had one removed that was just outside of my intestine, the rest have metastasized to my Liver. With tumors in the liver, the liver can’t filter out all the serotonin which is why the flushing symptoms are present. How long has he been on the Xermelo? I’m likely getting ready to go on it and I know it can take between 3-6 months to start working. Hopefully it will start to help him since that’s what it’s specifically designed for.
I have not heard any link between dioxin and carcinoid, but as I’m sure you know, there’s a lot they don’t know about this disease, especially when it comes to causes. I know that Sue gave you the info for Dr. Liu, and being on the forefront of research around NET tumors he might have some additional info from you.
Both you and Gary will be in my thoughts and I hope that Gary is able to get back to living a normal life soon.
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Christopher, Thanks for the response. Gary has been on the Xermelo for about 5 months. He doesn’t think there has been a lot of improvement from it but he plans to continue. The Xermelo is rather expensive, just a heads up. The oncologist at Georgetown University Hospital gave us paperwork to apply for a financial assistance from the manufacturer. We had to fill out part and send in proof of income along with 2017 (we applied in 2018) tax returns and W2s. We did get approved so we don’t have to pay for the Xermelo. We do have to reapply each year though. I’m sure you are finding out that all treatments for carcinoids are very expensive. I is so important to have good insurance.
Thanks for the info about Dr. Liu. We will have to reach out to him to see if he has any info about the relationship between NETs and dioxin.
Good luck in all your treatments.
Peggy
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