Hi, My Name is Devyn, I Have Cancer
Mike drop…. Yep…. I have cancer.
In keeping with my tendency to be an over-sharer, I am going to overshare… This post has almost nothing to do with Our Philly Row (until the end), and everything to do with me and what the fuck is happening. Should you choose to continue, may I suggest some background music to set the mood (it’s what I listened to as I wrote this).
As I hit “Publish” on this post, I am less than one week into the very shocking and surprising news that I have cancer. Most people at this point tend to keep such news on the down-low, at least initially, slowly letting others know on a need-to-know basis. But, that’s just not who I am (cause I am an over-sharer, duh). I am the type who processes difficult things by getting them out in the open, talking about them. Writing this post is the first step in my cathartic process of coming to terms with my new reality. You dear reader may know me, either in life or online; but more than likely, you don’t know me and haven’t met me. It doesn’t really matter because we are all human, and empathy knows no boundaries, even with strangers.
“It introduces one to the notion that you may never be able to bring yourself back to where you were before it all began. It is this realization that has been settling in this past week.”
Cancer is a six letter word that strikes fear and terror in anyone who gets diagnosed. It rips through a person like a tornado, sometimes leaving a brief but still impactful trail of destruction, other times taking the ultimate toll of one’s life. There is no way to prepare for cancer, it can strike at any time, for any reason. It introduces one to the notion that you may never be able to bring yourself back to where you were before it all began. It is this realization that has been settling in this past week.
So, I suppose you want to know what happened…
Well so do I… So. Do. I.
Here is what I know.
Whenever I have a meal, I tend to drink a lot of water, I always have…. But early in the year I began to notice that I was having some difficulty swallowing my food, necessitating my drinking more water than usual to get the food down into my stomach. I didn’t pay much attention at first, but by the beginning of April, I was more and more conscious of this happening when I began asking for more water when we ate out.
Like any typical man, I tend to ignore what I consider small ailments, and view minor pain as more of a nuisance than anything to be checked out. But in early May, just before we left for our Midwest Road Tour, I mentioned to Y that I had noticed an increased difficulty swallowing, and he had begun to notice my drinking more water at meals. I hate making appointments for a doctor, but agreed to make an appointment with a specialist upon our return from our trip, which I did three days after we got back into Philadelphia.
I will spare you the details (note this is very hard for an over-sharer like myself), but in a nutshell, I first met with an Otolaryngologist (ENT doctor) in mid June, I then had to wait until August for follow up testing (they wanted to schedule me for October, but I pushed back). The results from the August testing resulted in my being scheduled for an Endoscopy last Thursday for further examination.
An Endoscopy is out-patient surgery, which in a nutshell involves putting you under, inserting a camera down the esophagus all the way down to the stomach to see what is going on. I was in surgery for over two hours for what should have been a 30 minute procedure, but as I sat, somewhat delirious, in the recovery room, I had not made any connection that the extra time was relevant. Just then Y arrived to take me home, and directly in front of him was my doctor. He sat and explained that when he went in, he surprisingly discovered a tumor in the esophagus wall just above the stomach (in fact they could not get around it to get to the stomach). He immediately did a biopsy and sent the sample to the lab. It came back as cancerous. Course of action is to get me in for an Upper Respiratory Ultrasound.
There I sat in that chair in the recovery room, dumbfounded. Y was next to me, comforting me with his words… “We’ll get through this” and “I am here for you”. I was generally speechless. So. Many. Things…. Going through my head, so many questions, and no idea what to do next. Shit! I have cancer!
[Image: Illustration of Esophageal Adenocarcinoma – This is why I have been having trouble swallowing food.]
That is when my head really began to spin. Suddenly, I founs myself making all sorts of plans for what may happen. What if I really only have a short period of time left? Should we stay in our house? So. Many. Questions.
This is also when I made the connection to why I have struggled to get anything accomplished all year long. Starting late last year, I noticed I was struggling to gather the motivation to work on projects. I was blaming it on mild depression, when in fact, I’ve been sick since last year and didn’t know it. Wow, this makes so much sense now. I have been so mad at myself for not having the motivation to get things done which I know I can do.
[Image: An admittedly less than stellar selfie of me exhibiting post procedure realness in the recovery room on Tuesday.]
The results confirmed that I indeed have cancer. The diagnosis being Esophageal Adenocarcinoma (a form of cancer in the esophagus). At this point, the stage is T3N0MX, pending one more test to confirm. What is T3N0MX? I had to look it up and learn a few things. In brief, T3N0MX breaks down as follows: The tumor (T) is stage 3 (T3) which is considered large. The node (N) refers to the lymph nodes, and is a zero (N0) which means there is no cancer in nearby lymph nodes. The last is metastasis (M) which indicates if the cancer has spread to other parts of the body. In my case, it means it cannot be measured (MX). That means that as far as they can tell at this point, it has not spread. Woo Hoo! (If you are as obnoxiously overly curious as I am, you can learn more about the codes here.)
[Image: This is a PET-CT Scanner which can see all the way down to the molecular level. Source: Siemens]
What’s next?
After getting the PET-CT scan [UPDATE: 9/5/19, PET-CT Scan scheduled], I will need to go through chemotherapy and radiation treatment to stop the growth of the tumor, and hopefully shrink it down. That is likely to be six to eight weeks, and then I can have surgery to remove the tumor. If all goes well, I should be cancer free by the holiday season (fingers crossed).
[Image: Protein shakes, smoothies, and baby food are now part of my new way of eating. No hamburgers for a while.]
What was the cause?
Well, in a nutshell, acid reflux. I have had acid reflux (AR) for as long as I can remember as an adult, perhaps even as a teenager. I’ve been on AR medication for more than 20 years, which has kept it tolerable, but still present. It’s always been one of those things which I accept as my normal. Unfortunately the long term result has been a condition known as Barrett’s Esophagus, which is when the tissue walls of the esophagus are transformed over time into a different type of tissue altogether. It basically turns into the same type of tissue as the stomach lining or intestinal lining. I have never been checked for this before, I didn’t even know I had it. But folks with Barrett’s Esophagus are much more susceptible to cancer. I will need to be checked via an endoscopy on a regular basis for life to ensure I don’t have a repeat.
[Image: Me admiring my new lewk. How flattering is this gown?]
All the chaos aside, a sense of enormous gratitude has washed over me since Tuesday. I am relieved that I only have to go through chemo and radiation treatments followed by surgery. Yes it will be hell, I will be even more exhausted than I have been, and I will feel like crap a lot of the time. But that’s okay. I am also grateful to have a top-notch medical team at a Jefferson Health, and thankful for good medical insurance. Knowing I will get through this and regain my life back… Priceless.
Sorry if this post bored the crap out of you, or if you don’t really care. I wrote this for myself… Writing about it becomes a cathartic process to accept my reality, and not waste anymore time stressing about it.
[Image: Meanwhile, back at the ranch house, I am so excited to get the stair restoration project going.]
I am also getting bids from skilled carpenters to have our staircase restored. I hope we can get that going this fall too. I was planning on putting it off until we have some other work done, but it is important that this get done. The staircase is the spine of our house and it needs a realignment.
I am also putting together my plans for the master bath I have been talking about forever. I have all of it in my head, now I need to translate it to paper so we can have an architect draw up the plans and find the right contractor to hire for the heavy work. I still want to do the finish work, but as much as I am all about DIY, I cannot physically do the master bath without the help of professionals.
And that’s it for now. One more thing…. I said in The Age and Style Our House (Part I, How Old Is It?) I would have Part II (What style is it?) done later that week. I will get it done, I promise…. I’ve just been a little tired.
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I was in Philly on Saturday and was down in the South Street area. I was looking at all of the row homes trying to find your planters! I must have had a feeling!
Love, hugs and prayers my prayers!
You were close! I live about a ten minute walk south from South Street.
Thank you for the hugs and prayers. ☺️ 🙏
Always!!! I will be in Philly a lot with Nicole at Temple! Happy to deliver or ship anything from the City!!!xo
I’m so sorry, but at least they caught it. You should write about this as much as you want! Sending good thoughts your (and Y’s) way.
Thank you Alice 🙏
I feel incredibly grateful that it was caught this early on. Writing it out helps put in perspective.
Cancer. One of the scariest six letter words in the English language. That the tumor is contained and hasn’t spread is the really marvelous news following the really bad and scary news. I had a Giant Cell tumor (non-cancerous) that was eating it’s way through my thigh bone necessitating surgery to remove the knee, half of the thigh bone, a quarter of the calf bone and 90 percent of the big muscle just above the knee and installing a titanium internal prosthesis. Welp, 30 years later the cement bond is breaking down and I have to have surgery again. Not looking forward to that. We may be going through the recovery process at about the same time! We can b¿tech and moan together!
Thank you Kim 😊😊
My first draft for this post was on Monday when I knew nothing beyond the fact that I had cancer. Yesterday’s tests were a huge help and really allowed me to sort things out.
I am sorry about the cement bond breaking down, but I am certain the cement they use now will last much longer. Keep me posted. We should team up! 😊
So much love sent your way, Devyn. <3
Thank you Stacy, and the feelings are mutual ❤️❤️
Devyn, thanks for telling us and taking us with you on this journey. Godspeed.
Thanks Cindi 😍😍
While I plan to keep the focus on the house, you can be sure I will do progress reports on my recovery.
So sorry to hear of your diagnosis, but I hope you have a speedy and uneventful road to recovery! Sending healing thoughts.
Thank you Caitlin 🙏 Speed recovery indeed!
I am an endoscopy nurse at Presby. As the news goes, it sounds pretty good so far! Sounds like you had an ultrasound to stage it. No nodes! That is excellent. And attitude is everything, so I know you will do well. It’s a punch in the gut. Allow yourself to laugh and cry and not to be brave all the time. The main thing now is to deal with it one step at a time. Dont try (as hard as that is) to look too far ahead. Deal with each step as it comes. Unfortunately, treating this cancer is going to become your new job for the next few months. You must come to terms with that too! Best of luck to you!
Thanks Jen 😊
As an endoscopy nurse, I am sure you have seen much worse. 😳
It is indeed a punch in the gut, but I am known to be pretty persistent. My medical team is great! I am not accustomed to having anything like the level of care that I am getting. I feel like royalty.
Hang in there, Devyn! Fortunately you are tough and determined; don’t lose sight of that. Over-share, process, and keep moving forward. Pro Tip: Listen to something more upbeat than Loscil… just as diet is crucial, what you hear and see has a big impact on your well-being! We’re all looking forward to your future posts. Hugs to you and Y!
Thank you Eric 😊😊
I am pretty determined 😉
I have long been a fan of dark music, it comforts and calms me. No need to worry though, there is plenty of dancing music going on in our house too. Hugs back 🤗
How brave you are to share – even if you say you over share – this is scary stuff. I admire you so much and love reading about all your work on the apt and now the house.
This ”internet” friend sends lots of love and hugs and prayers.
Looking forward to cheering you along your road to recovery !
😊😊 SoGal,
This is where the Internet excels. As much as I hate some of the things it has and continues to do to humankind, I love how it has connected me to a huge variety of people I would never know of otherwise. Between this blog post, my Instagram post, and my Faceb00k, I am overwhelmed by the outpouring of love and care from people. 💕❤️
Can’t wait to get back to the house though. Y is anxious to unpack some boxes we packed up in 2017, and so am I.😳😳
Hi Devyn, I don’t know much about you (or your home); I found you through Blakehill House. But I wanted to say I am sorry. I am 3 years out from a colon cancer dx. One thing I would encourage you to talk with your drs about is immune therapy. It is making its way into lots of treatments but not sure where it is in the esophageal cancer realm. And more unsolicited advice 😂 if your chemo involves oxaliplatin (not sure if all platinum chemos cause neuropathy) ask about cryotherapy. New studies have shown this can help with neuropathy. So sorry for your news and hope the advice isn’t aggravating.
Thank you Beth, and welcome! 😊
I am pretty new to all this, so I appreciate input.
Given the very low survival rate of this type of cancer, I am even more grateful that my prognosis is so good.
Of course the next several months are not going to be fun, but I will make the best of it.
Devyn, Few things give us a gut punch like the word cancer. Thank you for sharing this part of your journey. As you’ve already been told, attitude is important. Don’t forget all of us who are pulling for you, and use our strength for yours. Sending you and Y peace, strength, and healing.
🙏 🙏
I am grateful for all the support and the knowledge that there are those pulling for me. Thanks ❤️
Devyn, I’ve met you in Chicago and NYC but never Philly. Sad to hear the news but you’re the personality that will survive with loved ones support and thrive from community support! You have a village. We are here. Fuck cancer. Ain’t got shit on you my old friend.
Lots to photograph in Philly! …Although I don’t take my camera out much anymore. With all the billions of “photographers” out there, it doesn’t seem as interesting as it once did. 😊
I do have a village! IRL and online… So thankful for it! #fuckcancer
Thanks for sharing! We will be thinking about you and wishing you well. We just went through breast cancer as a couple and are now in the other side of that. So many emotions! So much of the time! Let it sink in, and process as you will.
Thanks Derek 😊
This has certainly opened my eyes to the reality of too many people. Like most, cancer happened to other people, until it happened to me. I am now in the initiation process for a club I never wanted membership too.
Thanks for oversharing! I also overshare, but then that’s how questions get answered. Yes, I’m going to subscribe.
Thank you Cuz, and welcome to my blog!
I overshare a lot here, so we have much in common. 😍
Sending you solidarity, brother. Companionship, kindness, friendliness,
and all of the warmth that is life with people. May it all be yours, now
and later too. Wishing you so much goodness and health.
Thanks 😊
I don’t know you, but I love your blog, your writing and voice and LOVE what you are doing in your amazing home. From a stranger in Canada, sending <3 as you kick cancer's ass.
Hi Wendy, Welcome! We love Canada! Well most of us do.
Thanks for the kind words… My friends would tell you I always have a story about almost everything. ❤️❤️
I will kick cancers ass for sure!
Well, shit – this internet stranger insists that you look after yourself and get well again.
Thank you! And no need to be a stranger 😉😉
Love you very much my dear friend. You’ll kick this thing in the ass! –John
John! Can you believe this? No worries, I will overcome!
Luvs ya! ❤️❤️
So sorry to hear such crappy news Devyn. I hope that the prognosis is every bit as good as it sounds. Even better, actually. I think we have some of the best docs and hospitals in the Philly area! Thinking good thoughts for you and Y.
Thank you Tara 😊
We do indeed have some of the best docs and hospitals in Philly, one of the many perks to living here. Both Y and I are super happy with the care we’ve gotten at Jefferson…. The doctors here spend time with you (unlike they did in NYC).
Devyn,
As I anticipate a similar journey with a row house (albeit in a different PA city) in the near future, I look forward to your posts enormously. I often feel a combination of gratefulness and guilt when you encounter surprises (aka problems) on your renovating (or is it restoring) journey. Your last post was full of the positiveness you have when approaching the endless list of ideas and must-dos for your row house and it is a real privilege to be able to share your trials and successes. In this post you really took it up a notch but in a way that is raw and inclusive. Thank you for that. On the same day as you post arrived I read a story on LinkedIn about a father who lost one of his eight year old twin sons. He too, had a similar motivation to share his story. Here is a quotation from that story which, I think, links your story perfectly with his “We heal in small bits while talking about it.” Enough said. Can’t wait to see those stairs!
Thanks Gary😊😊
If there is one thing I have learned as an adult it is to never underestimate the power of honesty and transparency. Both things that are sorely lacking in our current culture. 😢😢 Being open brings on a healing catharsis which I honestly need right now.
As I work through this, I am excited to get my strength back and get to work on our rowhouse.
Enough about me 😜…. Now I am curious about your rowhouse adventure! I hope you will continue to comment and share your experience.
It’s really important not to read statistics about your cancer unless they are FOR SURE recent. Like within the last year…and even then, what was written in the past year is likely based on work done earlier than that. So much of what you read — the doomsday stuff — is outdated and no longer applicable.
Good luck with this cancer and its eradication.
I’m sorry to hear the news but happy they’ve been positive during these circumstances! Wishing you all the best with your recovery. And, you look fab as frick in that gown!
Devyn, I am praying for you. I enjoy reading your blog and I know you will get better soon. God bless you .
Peggy, the original s. philly girl
hi Devyn, I wish you a good and fast recovery. I hope everything goes as planned and described in your post. I’m sure you’ll get better after and get out of this rollercoaster helped by Y’s support. Sending you my best wishes all the way from France!
Awww Devyn; We are strangers but to me you’ve always been a creative person I admired who brings beauty in to the world. You dig through old treasures and see the beauty in them. You make things with care and thought. You create beautiful homes for your family. That means something. Creating hearth and home is an act of love, a way of keeping loved ones close and caring for them. This was how I stumbled upon your blog. I thought “I can’t believe a regular person who isn’t a professional designer made something so gorgeous”. But that’s what you do.
You have a real spark inside you and I know that spark is going to make it through to the other side of this struggle.
xoxo, Kelli with extra kitty kisses from Gesualdo the cat
I never set out to inspire others, but if that is the net result, I am happy to oblige. The original purpose of the blog was to keep friends and family up to date as they are scattered about the country (especially my now departed Mother). Everything else I get from doing the blog is gravy. I am so looking forward to getting past this temporary roadblock and getting on with making our house a home one project at a time.
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