Ryan Roller Coaster

I have not posted in quite some time and to be honest I only have myself to blame for it.  Cancer has been something beyond a roller coaster ride. It has been more of a roller coaster that became a haunted house, which turned into a tilt-a-whirl, resulting in an attempt to leave the ride only to get jumped by 7 school bullies.  It is simply Hell.  

However my post is meant to discuss something different.  I write this blog as both a means to educate my friends and family as to what I am going through, and in hopes that maybe it will be helpful to someone going through a similar situation; to maybe help them realize they are not alone in their struggle, and that it is okay to have these thoughts.  My post today is on Embarrassment.  It is sort of a weird thing to bring up when there is so much more to worry about when you have cancer, but when life has been placed on a potentially expiring clock, every minute you spend, you dwell on.  


There has not been a day that has gone by that I worried about my ability to be attractive to my wife.  When we were engaged I was 185lbs, worked out regularly and while I would never say I was in peak shape, I had a build that I was content with.  I now weigh about 165lbs and resemble Christian Bale from "The Machinist"  I am winded doing simple chores and no longer feel confident in my own ability to protect myself or my loved ones if such an occasion occurred.  This is the type of embarrassment that is bestowed on you without your permission and I wish I could say that was it, but it always can get worse.  

Getting married was the happiest day of my life, without question.  When I said my vows I meant them with a conviction that I stand by daily and try to uphold to the highest ability.  She is my rock and I truly do not even comprehend how I could get through my day to day without her.  With all that being said, there are things that married couples don't do together.  Let's just call them "Boundaries".  Every relationship has them.  They are in place as a method to maintain normalcy, retainattraction towards one another, and allow a person to maintain a sense of individuality.  Clover and I have plenty, however cancer has a wonderful way of stripping them from you without permission.  

This story I am about to tell is embarrassing and to be honest I have no idea why I am making it public, but here we go.  The other night my wife came home after a long day of work and instead of a welcoming husband, there was me, curled in a ball in pain with waves upon waves of nausea.  She went to get certain medicines to help alleviate the cause but it was too late.  I rushed to the bathroom and proceeded to throw up everything inside of me.  Clover patted my back with the basic reassurances you remember hearing as a child.  In between gags and heaves I was able to ask Clover to leave the room immediately.   She asked why to which I responded "because I am about to shit myself"  She left the room and I did exactly what I predicted.  I spent the next 15 minutes in the shower washing myself clean and just feeling more embarrassed than I have ever in my life.  How could anyone find your sexually attractive after the lines "I'm about to shit myself" come out of the mouth of the opposing party?  I just sat there, replaying the scenario in my head, hating cancer more than ever as I see it now as a wedge being thrown into my marriage and just hating myself for something that I had absolutely no control over.  

Clover came into the bathroom, and I expressed my shame to which Clover just shrugged and said it was not a big deal*. I can only wonder if I am the luckiest man on earth for marrying a doctor, to whom what just occurred was merely a drop in the bucket, or if I gained a better understanding of what love was and truly saw the words "for better or worse" play out.  

I am sure the battle will get worse before it gets better, but if I can disregard the embarrassment for even a second, it may make it slightly easier.

*Clover: Meh, to be fair I've seen a lot worse. 
 

Huck Cancer

Today’s post is in honor of a beautiful, strong woman who has been there for Ryan through thick and thin: Lena Palmer. It goes without saying that through the past year and change we have discovered over and over again just how limitless our friends’ capacity for love has been. This has been transmitted to us in a multitude of ways: hopeful texts, perfectly timed phone calls, home visits, big bear hugs. Since diagnosis, our friends have also come up with thoughtful and creative ways to help ease the financial burden of cancer, and last year, Lena dreamed up something hilarious, incredible, unbelievably sexy, and oh so reflective of The Ryan West. What was that project you ask? A nude calendar of course. Over the past several months, Lena recruited a large group of friends to contribute as photographers, models, lighting specialists, location scouts, social media mavens (http://skydmagazine.com/2016/11/huck-cancer/), and, in the case of Ryan’s and my photoshoot, hype men. And with the help of Media Ventures, Inc., she brought the 2017 Huck Cancer calendar to life. This was a gargantuan effort that took way more organizing and coordinating than I could ever hope to fully understand, and I am blown away by the results – almost as much as I am blown away by Lena herself.

Thank you to everyone who contributed, bought a calendar, “liked” posts about it on Facebook, subsequently shared those posts, a huge thank you to all of the wonderful models and photographers, and very special if somewhat awkward thank you to my coworkers who found me in the hallways to say “so… about this calendar… ;)”.

Photo credit: Lena Palmer (who else?), 1/10/17

Photo credit: Lena Palmer (who else?), 1/10/17

-Clover

New Year, New (Long) Post

I just read a book recommended to me by several sources, the more convincing ones being the words of several co-residents, one of the less personal being a Medscape email urging me to read “5 Books by Physicians: Relax Over the Holidays”. It is a memoir by Dr. Paul Kalanithi entitled “When Breath Becomes Air”. In short, it is the story of an esteemed neurosurgical resident who, in the last year of his residency, at the age of 36, is diagnosed with Stage IV lung cancer. It details his life, his accomplishments, his diagnosis, struggles, and possibly most importantly, his philosophy. An avid reader, he spent much of his life philosophizing about the human condition, about life, death, and what it means to have and create meaningful time. His writings conclude with a letter to his infant daughter, and the book itself concludes with an afterword by his wife Dr. Lucy Kalanithi detailing his last days. He passed away on March 9, 2015.

Prior to starting to the book, my senior warned me that it was emotionally “intense”. With a nod to acknowledge both her statement and my present situation, I persisted in borrowing the book from a colleague. And proceeded to read it to completion the next day on the plane to Dallas, TX. To say my senior was right would both understate and undermine the slew of emotions that ran through me during that airplane ride. I related perhaps too closely. From the way he felt about literature to their suspicions about his diagnosis, from the discussions he and his wife had to every word his wife wrote at the end. In their words I felt our past, present, and possible future. With his words, Dr. Kalanthini breathed life into a fear that I try to keep tamped down in the dark recesses of my belly. A fear that every once in a while slithers up with its shadowy talons to clutch at my throat until tears spring to my eyes. I had to stop and put down the book at least a dozen times during my first reading. Though each and every time, a tight, manic knot just under my sternum insisted that I pick the book back up immediately. I cried silently for most of that flight while my husband lay sleeping beside me.

This post is not meant to be just a heavy book review. Outside of my perhaps over-empathizing with a book, this post is meant as an apology to those of you out there still reading this blog. I apologize for not writing on this blog in months. Ryan has asked me several times to write or to tag-team onto one of his posts, but, typically citing exhaustion from work, I refused. My reluctance to share my thoughts began subtly, and I admit I couldn’t pinpoint the reason until recently. Over the past year, I have felt both grateful and lucky to have the medical training and knowledge to be able to interpret and navigate the turbid waters of cancer. As a medical student and then as a doctor, I found a sense of purpose during a confusing time, vowing over and over again to be his rock through the storm. But as the days passed by, as the tumor markers spiked up, as we failed each subsequent therapy, I found myself growing weary of discussing the details of therapy with even close friends, and of offering my opinion on whether I thought the next step would be successful. I now realize this inner weariness grew worse as I delved deeper into my residency. I simultaneously looked forward to meeting up with friends I hadn’t seen in a while but dreaded the kindhearted but inevitable inquiries about Ryan’s health. I didn’t want to admit it, but I felt as though I was constantly on call. I immediately felt (and still feel) selfish and cruel when these thoughts brushed past my mind. I began to give shorter and simpler answers to questions – “He’s doing fine. I’m doing fine. He feels nauseous. We’re going to enroll in a trial.” I feared I answered curtly but eventually grew apathetic to even that. A friend joked that I had become more robot than human, and somewhere on the periphery of my limbic system, I felt the full brunt of his words. This book kind of shocked me out of that state. I hadn’t really cried in months, excepting one brief instance in a hospital call room when I thought Ryan wouldn’t be accepted into this trial. But on that flight, as we neared Dallas, as I pointlessly shoved at my eyes with the edge of my sweater, I started to feel a little more human, emotionally speaking.

And so, I really want to apologize. To you readers for my negligence. To any friends I have brushed off for any perceived coldness. To Ryan for any emotional lassitude I’ve shown in the past few months. All I wanted was to be a wife, and not a doctor. But that being said, I am a doctor. And I am his wife. And I am your friend. And I do have both the gift and the responsibility of being privy to all of the details of Ryan’s health and treatments. He has always wanted to be very public about his condition, as generous with this information as he has been with everything else in his life, and it is not up to me to limit him. If anything, as he grows more tired and weak, it is more incumbent on me to make sure his voice is heard. And please let me say that the last thing I want is for this post to seem as though I am bothered by any compassionate inquirers. It is never a bother. It is actually my pleasure. My main point is that I have been shutting myself in rather than letting things out, I think to the disadvantage of all of us. I’ll try to be better this year.

In the meantime, in the way of a short update, we have been through (and failed) three lines of chemotherapy and instead started a phase I trial at Rutgers Robert Wood Johnson in mid-December. The trial combines a chemotherapy agent (MEK inhibitor) with an immunotherapy agent (PDL-1 inhibitor). This is exciting because of the preliminary results from a sexy phase 1b trial that was presented at the European Society for Medical Oncology conference this summer which showed partial response with combination MEK inhibition/PDL-1 inhibition in a small number of patients with microsatellite-stable colorectal cancer (i.e. what Ryan has). I'll try to explain more in a later post, but in the meantime I’ll put the reference from the press release below for those interested (1).  Superstition usually precludes me from expressing my hope for cancer-related things, but I am very excited and hopeful for this trial to work. All we can ever hope for is more time.

 

-Clover

1. http://www.esmo.org/Press-Office/Press-Releases/Anti-PD-L1-Immunotherapy-Shows-Response-in-Microsatellite-Stable-Metastatic-Colorectal-Cancer-in-Combination-with-MEK-Inhibition

Update on Treatment

 

Hello All,

I thought I would start things out with a puppy, because puppies are adorable and cute.  In addition I wanted to take a moment and update everyone on what has been going on.  I actually have been holding onto this information for a while as I hate being the bearer of bad news.  So I have been personally dealing with some stuff that I spent the past month or so debating even making public.  While I love being the center of attention, when it is in such a depressing light it is a bummer.  About a month and a half ago, after receiving a CT scan, Clover and I learned that the second line chemotherapy was not working and there has been some progression of the cancer.  As you can imagine this is a pretty shitty situation.  The 1st line of treatment lasted around 6 months before it started to lose its fighting ability and this only worked for a few months.  As lines of treatment fail, our options become more limited.  For what initially looked like a "non-aggressive" cancer, this bad boy seems to be having a field day with my organs. 

I have met with my medical team and they have outlined a new line of treatment.  It will consist of an oral pill that I will take that is believed to help stabilize the cancer, preventing further growth.  Sadly it is not thought to have much effect on decreasing or shrinking the cancer.  We are also looking into other drugs that while not specifically used for my type of cancer could possibly have an effect based on targeting certain mutations seen on a liquid biopsy that was taken a while back.  We are also looking into a procedure that injects chemotherapy to target the liver tumors that have particularly gotten bigger for more focused therapy (More information on that to come).  Other than that we are searching the country for any and all trials that I may be eligible for.

Womp Womp

Finding Comfort

Chemotherapy is an extremely taxing endeavor on your body.  While I handle it as best I can, I see people on a weekly basis that find the struggle almost unbearable.  I am not entirely sure if my reasons for seemingly handling it better are based on my age and ability to recover more quickly, my stubborn “deal with it” nature, or if I am just lucky (using the term lucky very loosely).  

All I know is this most recent chemotherapy schedule has been a little more demanding.  I joke with friends that this cancer is getting in the way of my social life, which is completely true.  I am pretty much out of commission from the day of the infusion until about 2 days after.  However, I am a young idiot so I still go to work and try to handle day to day activities, but it is very clear that I am not at the same level as I used to.  

I am writing this post because I feel it is important for people dealing with cancer or even just dealing with any of the many inconveniences of life to find comfort when uncomfortable.  I have pretty much a solid routine that I try to follow after chemotherapy.  I go home and blast the air conditioning (I typically get very hot after infusion)  I then lay on my couch with the beautiful quilt that Becca Canetti made for Clover and I as a wedding gift. From there I just turn on the television and wait for chemo brain to kick in.  Sometimes Clover will see me trying to do work and scold me to relax, which is probably to my benefit because I am barely making sense when trying to speak.  Chemotherapy has been unpleasant, however I am fortunate enough to be able to do some things and not become a hinderance to my friends and loved ones.

The moral of this post is find what makes you comfortable and do it.  

That is all

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Cancerversary

Yesterday was my cancerversary, for people that may not be familiar with the term, the event celebrated 1 year of me living with stage IV cancer.  It was something I for the most part had forgotten.  During the whole initial time of being diagnosed I was pretty much in a blur of emotion and depression.  That in addition that I am absolutely horrible with dates made me completely unaware of what was about to happen.  My friend Courtney actually brought it to my attention, asking if I had anything planned.  The way I best handle having this disease is 90% of the time pretending I don’t have it.  It is what allows me to attempt to live my life as normal as possible.

Little did I know that my friends were planning an event to celebrate the occasion and I unknowingly found every possible way to make it as difficult as possible.  With a mix of wanting to work out, stay and work late, go to a work event dinner, and just head home and do nothing I made it difficult for our friends to sway me to come out.  Clover met me at work in an attempt to get me to leave and I then tell people at my job that we would stay for dinner (because free food).  Clover cleverly pulled the wife card stating that she wanted to do something just the two of us since she has been working so much.  A reason I will never argue.  She then mentioned that she accidentally left her stethoscope at The Long Hall (a bar nearby).  We walk in and I quickly mentioned to her about making this quick as my company starts trivia here in a bit and I didn’t want to be around for it.  Then I see a collection of my friends, leaving me confuse.  Maybe they really wanted to win Game of Thrones Trivia and didn’t tell me.  Then I saw lots more faces and realized i had been tricked.  Screams of happy cancerversary were shouted and I was greeted with a cookie shaped like a butt, which was absolutely delicious.  Every day I find myself so thankful for the friends I have in my life that are able to find any reason to celebrate.  This has without question been the longest year of my life and I really cannot fathom what is to come but I hope it involves more butt shipped cookies.

Love you all

Funny side story: I am friends with the owner and the bar staff as this is one of our more popular trivia bars and a lovely place to grab a pint after work.  The waitress came up at the end of the night and congratulated me on my anniversary.  I corrected her by saying cancerversary and then went into a short detail as to what the celebration was really for.  The time it took for her face to drop was priceless.  I followed up by saying my friends have unique ways of finding the best out of the worst.

Finally our friends only came in 2nd at Game of Thrones Trivia. WOMP WOMP

A Little Update


It has been a little while since my last post.  Nothing really has changed.  I am on this new chemo regiment which I absolutely despise.  My body handles it well considering the myriad of side effects that I could have, however I am a prissy bitch.  The new regiment has me going for infusion every other week however afterwards they suit me up with a wonderful little fanny pack of poison that continuously pumps medication into my body for 2 days.  Sounds great right?  What makes it even better is during that two day process, I have a tube coming out of my chest leading to the fanny pack which i get to worry about continuously as I sleep, ride the train or do pretty much anything.  The new treatment has provided a wonderful array of side effects which make day to day slightly more irritating.  I am pretty much rendered useless after chemotherapy and will just lay in front of an air conditioner hoping my body temperature will go down.  The next couple days will consist of stomach cramps, and an overall haze that I go through which I have dubbed “Chemo Brain”.  These side effects are minor considering the laundry list of side effects.  (Plus I STILL have my hair).  Overall the message of this post is simple.  Chemo sucks, cancer sucks.  I am dealing with it.
 

Hugs and Kisses

A Little Soapbox

As you may have read in Ryan’s last post, there have been quite a few changes in our lives since May. In the past month and a half, we have gotten married, we’ve moved, I started residency, and he started a new chemotherapy regimen. I’ll go into that last one a little further. As you know, he has been on the XELOX regimen (Xeloda and oxaliplatin) since mid-December. He has clinically been doing quite well, and we were able to fully enjoy both our wedding and honeymoon. However, a few subtle changes had already started to occur: about a month before the wedding, we learned that there were some small changes in the CT of the lungs that were a little concerning but of uncertain cause. A week prior to the wedding, we learned that his tumor markers had jumped up from the 300s back up into the 1000s. The week of the wedding, Ryan had a follow-up CT of the lungs, which showed very small nodules and punctate (hole-y) lesions, but which were still determined to be inconclusive in terms of etiology. We left the office that day somewhat appeased that there didn’t seem to be any significant progression in the disease, but still a bit anxious (at least on my part). We went on to experience the most loving and beautiful day of our entire lives, and then flew to Europe to enjoy 8 days in Italy and Greece. We then flew back on June 1, traveling almost a full 24 hours via Sheremetyevo International Airport in Moscow, and scheduled our next doctor’s appointment.

At this appointment, the situation was revealed to be a bit more serious than previously implied. The jump in the markers was quite significant, there was a fair level of suspicion that the nodules in the lung were likely metastatic disease, and we would not be continuing with the same chemotherapy regimen, as these findings showed progression of the cancer. Instead, our plan would now be to discontinue the Xeloda (he had been off of Oxaliplatin and Avastin for about 3 weeks at this point), and switch gears to another line of therapy: Irinotecan. We would also continue Avastin, and replace Xeloda with fluorouracil (5-FU).

On a personal level, it was a bit jarring to be told that the tumor seemed to have stopped responding as well to the chemotherapy and that we would have to change regimens. I won’t lie, I felt a bit as though we had been a bit caught off guard after being told before the wedding that everything was essentially fine. Transparency in healthcare is of the utmost importance in the care of patients, not only so that patients can be educated about the disease process transpiring in their own bodies, but especially so that patients can practice autonomy in their medical decision-making that is both educated and appropriate to their personal situation. That being said, I have been told that in the care of cancer patients, where the goals of therapy are not just survival and prolongation of life but also quality of life, full transparency about the gravity of the situation is not always the correct answer. That is to say, brutal honestly about the situation may hurt the patient rather than help. And I tend to agree. In this blog, Ryan has consistently posted on the importance of a positive attitude and hope in his fight against cancer. In a disease where the stakes often seem too high to defeat, I believe that the attitude of the fighter can really sway the outcome. You might say that by not revealing every horrific outcome and prognosis, the effect is somewhat of a nosocomial belle indifference, but when it comes to cancer, I think this may be only part of the story. Did we enjoy coming back from vacation to find out that what had been seen in the labs was indeed progression? No. Did we feel a bit defeated when we found out that we would need to switch chemotherapy regimens? Yes. But would we have been any more prepared for this news if we had been told as soon as the results came out, before our wedding, before the honeymoon, before we had to speak of infinite love to each other in front of all of our family and friends? No, absolutely not. If anything, by not drawing out every hard edge of the disease, Ryan’s doctors actually allowed us to experience and fully enjoy the happiest day of our lives. Obviously the ability to determine the appropriateness of softening negative news comes with decades of experience and years of knowing your patients well. But in a time when everyone (including myself), just wants the hard news, wants it straight, and wants it now… it’s good to consider that, at times, a little softness may be more charity than condescension.  

I honestly meant to go into an explanation about Ryan’s new medication regimen in this post, but as I have digressed so thoroughly, I won’t pain anyone with another 3 paragraphs of didactics and will save that treat for next time.

Till then…

-Clover

Brave New World

I haven't updated the blog in a little while.  Luckily I have been preoccupied with some amazing events in my life.  I recently tricked Clover into marrying me and enjoyed a fantastic honeymoon in Rome and Athens.  While there will be plenty of time for me to go into details about that, this blog post has more of a solemn tone. 

Prior to the wedding, during my routine doctor visit, they noticed my markers hadjumped up. These markers are used to track how effective the treatment has been at shrinking the cancer cells.  So essentially, the numbers jumping up scared the shit out of us.  We went for a CT scan, and the results showed no tumor growth, however no real shrinking either.  They also noticed a few nodules in the lung about a mm in size, however they were not able to say exactly what it can be, just that it will be watched closely.  The doctors made it seem like everything was okay and going smoothly.  We now know they were being overly optimistic to avoid putting a damper on the upcoming wedding. 

After returning from our honeymoon, I went to see my doctor to get back on track fighting this disease. The tone was more somber as the doctor explained that they decided to take me off chemo temporarily as they prepare me for a second line of treatment. This basically means that I will be receiving another type of chemotherapy infusion in hopes of attacking and continuing to shrink the tumor cells.  I will also be getting a procedure called a liquid biopsy next week in hopes of finding something in the cancer cells that could qualify me for specialized treatments or trial runs. 

This is an extremely scary moment in my life as we return essentially to square one.  We have no idea how effective this new line of treatment will be or if it will even work.  We also have no idea how my body will react to it.  I have been extremely lucky so far having minimal side effects, however a good thing can only last so long. 

I lasted an exceptionally long time on 1st line treatment with almost no side effects.  It gave me a confidence that almost made me feel superhuman.  Cancer was nothing but a minor roadblock in my life, and I was kicking its ass at a speedy rate.  This recent news has taken that away from me.  It has been a gut check of reality that I am dealing with a life-threatening disease that is slowly trying to kill me.  Perhaps it is this perspective that is needed to keep grounded and focused on the fight. 

It is hard to put into words the type of effect this has on a person mentally.  I lived my life always with the glass always half full.  Now, I hit bouts of depression that make me sympathize greatly with the people who suffer from it on a regular basis.  I will try to see the silver lining and say it aloud in hopes that I will believe all that I say but there is a harsh reality that is hard to avoid.  It is hard to see progress or failure in a disease you cannot physically see.  I feel fine for the most part, however every pin and needle, every cramp, every acute pain whether it is real or manifested from my imagination, is thought to be cancer slowly running a destructive train on my organs.  It acts as a constant reminder that there is a problem the world has yet to solve that exists in my body, and my goal is to live long enough to allow someone to find the answer. 

I created this blog to update friends and family of my progress, and the road ahead is sure to have ups and downs, but I know I can beat this.  I hope that these posts can serve as an inspiration for others that may be going through the same thing, that it is okay to have these feelings and fears, but that it is most important to never give up. 

Until next time.

Routine

Routine is such an interesting thing.  It gives people the ability to become used to something that many normal people may never experience.  Chemotherapy has become a routine for me.  I spend over 4 hours a week in a hospital receiving treatments that essentially pump poison through my veins.  I head home and know the exact time the anti-nausea meds will wear off and when I will become useless for the rest of the evening.  That time is 8:30pm.  I have seen the effects of chemotherapy on many people, and I know that I am luckier than most as I am able to handle it at a level that often confuses the nursing staff and doctors over at NYU. 

No person should ever become used to having an IV every week for 4 hours, especially while in their 30’s.  The human mind, however, is so unique in its ability to adjust and roll with the things that happen.  I joke that it’s like if you only had cereal with water instead of milk.  Sounds disgusting now, but I am sure any person could become accustomed to such a culinary delight with the right motivation.

I have been on chemotherapy infusions for almost 8 months straight.  This is dramatically longer than many people.  I have been lucky to have minimal side effects from the drugs, and my ability to tolerate the medicine has been my strongest asset in fighting cancer.  They now keep an emergency kit nearby because the chance of me having an allergic reaction increases the more times I have my chemo.  While I hope that never happens, it is always better to be prepared. 

I guess the point of this post is do not fall victim to routine.  Life is unique and special and every event you experience should be wonderful and new.  However sometimes routine is necessary for survival.  Find your balance.

I will keep fighting the good fight and telling my story as long as people will listen.

Enjoying Life

I saw this online a while back and it really stuck with me.  I have no idea if this is something Keanu Reeves actually said but the message is what is important.  Finding out you have cancer gives you an instant sense of mortality.  By no means did I ever think I was going to live forever but I never thought so much about an exact time.  Cancer will instantly make you wonder it on a daily basis.  I am doing everything possible to live my life to the best of my abilities while maintaining a way of life that allows me to live comfortably for my family and myself.  Find what makes you happy and do it.  

6 Months

Yesterday marked the 6 month anniversary of Ryan’s diagnosis. It feels strange to mark something so life-altering in such a quiet manner. The first few months were full of such pain and confusion that oftentimes I didn’t even know what to think. I obsessively organized and planned for every possible worst-case scenario and yet was somehow not prepared for anything at all.

I wrote the following excerpt on the night of September 21 to try to reflect on what was happening and clear my head a bit:

I was running late. “Hi, so your fiancé said you would be here to pick him up around 5, but he’s out from the procedure now and should be ready to leave in about 20 minutes. Can you get here any sooner?” I rushed out of the elevator and to the reception desk. 4:36pm. “Hi, I’m here to pick up Ryan, I’m his fiancée. I think he may be expecting me inside.” Two minutes later, a nurse came out. “Hi, Clover? I’m Ryan’s nurse. He’s awake; he’s just waiting in the conference room for you. The doctor already spoke to him after the procedure. I’m just outside if you need me.” Another nurse popped her head out from her office: “I’m here too if you need me. If you need anything.” Strange. It was nice that they were being so helpful, but having undergone endoscopic procedures before, this seemed like overkill. Especially so close to 5pm. Still. I had a knot in my stomach and I wasn’t sure if it was residual anxiety from running late or another source of apprehension I’d been pressing down into the pit of my belly.
I opened the door to the conference room. Ryan was sitting at a large mahogany conference table, alone, sipping on a juice bottle of some sort. He turned to me with tired eyes. “They gave me a juice.”
I nodded.
“Also, I have cancer.”
At that his eyes reddened and he began to weep. As I hugged him, my mind went numb. On some distant, suppressed level, I had suspected and feared this. Weight loss, fever, chills, blood in stool, change in caliber of stool, anorexia, tenesmus. Checked off the boxes one by one. What they like to call "textbook". It still made no sense.
After we left the endoscopy suite, we went on with the day very methodically. Pick up packages from his work. Check. Take subway uptown to drop off trivia equipment at B-Ryan’s. Check. Tell Feetch about cancer diagnosis. Check. Order dinner. Check. Call parents to break the bad news. Check. Call the rest of the groomsmen and watch the news slowly disseminate through our group of friends.
Check.
He keeps asking me about his prognosis. Survival rates for rectal cancer are actually pretty good in the United States. First-line treatment is resection, assuming adenocarcinoma and assuming no metastases. Plus or minus radiation. I keep intellectualizing to cope. His primary defense mechanism has been humor. These will only keep us going for so long.
As I write this, he is sitting in a tub of hot water. It’s one of the only things that will relieve his pain now. His eyes closed, he looks so peaceful. Healthy, even.

A week later, I remember anxiously awaiting the results from the CT scan – and then the sudden drop in oxygenation as the doctor methodically reported that it was Stage IV cancer. Things just seemed to spiral violently downward in those months, and it's a miracle we flew out of that rabbit hole in one piece.

It’s hard to consider that it really hasn’t been that long. But 6 months later, everything seems to have settled down a bit. Cancer is a part of our daily routine now. He takes his medication every day. He goes to the doctor every week. On chemo days we know that he has about 2 hours before he really starts to feel nauseated and ill. Isn’t it so strange how something initially so jarring can become the new normal? I wasn't even sure we could get here. But every day I am thankful for the immense rallying power of our friends and family, who have supported us and guided us back to our lives as functional human beings.

Ryan has a follow-up CT coming up later this week. Hopefully it shows that the lesions have gotten even smaller. Minuscule even. I hope that they have somehow magically disappeared. Maybe that can be the new normal.

-Clover

RyFight Fundraiser

We wanted to present a recap of the RyFight Fundraiser from the perspective of the person that put the whole thing together Brenton Hard.  Enjoy!

This is my post about a very special person which has become a great network of people in my life.

Ryan West is a good friend, a special friend not just to me but the people in his life. Hopefully on the night of February 26th, we were able to show the same devotion he has towards us back to him. Before I go into background on this event, there are two organizations that I need to thank for their generosity. First, is the Long Island City Lion’s Club, they have been huge supporters of this event from idea to execution. They even came up with the idea of have it be a Horse Races Night. Annually our Lion's Club holds a Night at the Races as a fundraiser for the Irish Center of NYC with great success and entertainment for the attendees. As a result, I have experienced this type of event, even if it was on a smaller scale, and saw the success that could be possible from it as a FUNdraiser for our friends.

When I first heard about Ryan's diagnosis in October and I was at Ultimate Frisbee Nationals my heart sank and I immediately thought of the community that Ryan has been able to build up with his incredible life and how we need to ensure his presence in in it. As a result, I began thinking of ways that I could be a part of something which provides him the support he needs and could alleviate some of the stressors from his life. Working with the Long Island City Lion’s Club it quickly become apparent that host a Horse Races Event could be a real opportunity for Ryan, and the Lion’s Club agreed. They had already met Ryan from when they consulted with him about creating an ongoing fundraising bingo night for the club and the Long Island City Community. By November, the gears were in motion- the Irish Center was booked, volunteers were recruited, and the date was set. 

Between December and the night of the event, donations, participants, and overall goodwill of strangers snowballed. Day after day. Each raffle donation that came in seemed even greater than the previous, and we even received more than half of the bar liquor and had all bar supplies donated. As a result of the astounding prizes, we could not stop selling raffle tickets and we sold out of admission tickets with a week left to go and had an extensive wait list.

Ryan West is the kind of man who inspires an ungodly amount of generosity and love. Everyone wanted to help and be involved in some way. 

As the night approached, I felt nervous anticipation because I wanted everyone to have fun, the night to run smoothly, and most of all, make sure the fundraising efforts were a success for Ryan. Turns out, I didn't need to worry at all. Everything pretty much ran without a hitch, our amazing volunteers saw to every need that emerged, participants were well fed and well hydrated ;) and we managed to gross over $16,000 by the end of the night! Cutting out our minimal costs, this was especially with the help of our cook Stephen Glauser and his assistant Gaelen Austin and our liquor supplier Tom Michaelson. The Ryan West F*** Cancer fund was able to raise a whopping $14,250!!

Looking back with the knowledge of how time consuming, labor intensive, and complicated organizing a 150 person off track betting and raffle night fundraiser is, I gladly would do it all over again without hesitation. Well for Ryan.

Much Love,

Brenton

World Cancer Day

World Cancer Day is a day dedicated to raising awareness and education about cancer and taking action against cancer in countries around the world. We learned today that purple is the color of Cancer Survival. And so, here’s The Ryan West, repping World Cancer Day 2016 with his purple gear! #ryfight


Ultimate Frisbee Fundraiser

Hello All,

I wanted to take a moment to thank Jeff Greenberg and all that attended/helped run the Gary Mason's Annual Turkey Bowl back in November.  They used the tournament to help raise funds for the #RyFight and successfully raised $1151.  I am always surprised and amazed at the generosity of others during this extremely difficult time.  I have learned that cancer is an extremely expensive ordeal and with a disease that is based so much in mental toughness it can become extremely difficult when a person has to worry about how to financially handle the costs in addition to everything else.  I am blessed to have so many caring friends that are willing to put aside their own financial strife to help another in need.   There is no community quite like the ultimate community and I am so happy to have been a part of it for so many years.  Here is hoping I will be able to handle playing a bit at Fool's Fest in April.

I have attached a write up of the tournament, written by Jeff, which has been long overdue.  

It was November 27th the day after Thanksgiving and the forecast was for a beautiful day in the low 60’s. Much better than the previous year when snow covered the fields and cleats were useless in the ice skating rink that was Clarkstown North High School. This was the 21st annual hat tournament Gary Mason has hosted. People started showing up around 10:15/10:30. By 10:45 we lined up in height order, took a jello shot and then counted off 1-4. The teams were set and the jersies were Shania Twain, Tamar Braxton (I Think), Beach Boys (yellow), and Beach Boys (white). This was a round robin tournament (3 games guaranteed) with games to 13 capped at an hour and fifteen minutes. As the first 7 walked to the line it was clear that it was the day after Thanksgiving. People were moving a little slower, hucks were more dominant and skill seemed to not be there. But again, it was in the 60’s so who could complain. First match Shania battled Beach Boys (yellow). Yellow was victorious and kept their field. Tamar Braxton was defeated by Beach Boys (white). The winners kept their fields and again both Beach Boys teams were victorious in the second matches. So the finals were 2-0 Beach Boys v. 2-0 Beach Boys. And you guessed it, the Beach Boys won. Beach Boys white took down the victory and went undefeated on the day. Though I was not a Beach Boy, I can honestly say the battle of the 0-2’s was epic and involved a lot of jello shots. The games finished up around 2ish and everyone made there way back to Gary’s house where beer and warm food was waiting for us. I’d say 60 people played in the tourney and 35-40 people made there way back to Gary’s house. While there we had our annual Baby Pac-Man tournament. Baby Pac-Man if you are not aware is the GREATEST arcade video game ever. It is as if Pac Man had sex with a pinball machine and their bastard child was Baby Pac-Man. There were 16 competitors and though not seeded #1 after his 2014 victory, John Doebelle won again in back to back years.


Cranes Over Christmas

Ryan:
There are times when I get home after work and I am alone. Typically this would not be a problem at all, however on occasion a feeling of loneliness hits me.  Having cancer provides you with an immediate sense of mortality and loneliness is probably one of the worst feelings a person can have while enduring such a difficult period in their life.  I am unbelievably blessed with a caring family, a fiancée without whom I truly do not know how I would be able to handle this, and friends who, during a time when my life has been turned on its side, have found ways to right the ship and make sure that every day I spend with them is no different than before.  When I go in for infusions, I see elderly people and I hope that they have the same support system to help them get through this. Confidence is key and I would not have that without my network.  Now for the point of my post, which is dramatically more optimistic than the intro.  Clover recently wrote a blog post about a children's story involving cranes, which was moving and a wonderful source of inspiration.  Jenny O'Connell, more affectionately known as J-Tall, first enlightened me to the story as she had folded cranes along with many others to help provide support to a family member who was sick.  The crane has become almost a symbol of my battle, a sort of paper mockingjay for the rebellion in my body (Hunger Games reference).  Clover had started folding her 1,000 cranes to support the RyFight, which have started to fill any available table space in our tiny New York City apartment.  I think the best way I can describe Clover's cranes is that they were the calm before the storm.  Shortly after the post, I received a message from my friend Suki who informed me that her mom who lives in Japan and reads my blog had sent Clover and I a gift.  Upon opening the box, I was shocked to discover 1,000 tiny folded cranes strung together into a beautiful work of art.  The pictures do not do it justice.  I was completely overwhelmed with the gesture and the note that included the signatures of what I can only assume is a small army of Japanese woman who helped contribute to this beautiful piece of art.  Clover and I quickly started to brainstorm where to display the gift.  A day or so later, I received a call from my friend J-Tall who said she would be passing through NYC and wanted to get lunch.  I picked my favorite place near my office, which also happens to be probably the tiniest restaurant we could have picked for what would occur next.  I was surprised to see a couple other friends stopped by for lunch including my absolutely beautiful goddaughter Lilikoi.  Throughout lunch, we caught up and just enjoyed each other’s company. Toward the end of the meal, I noticed J-Tall was sporting a crane earring.  I made mention of it and then decided to tell everyone the abovementioned story about the beautiful crane chandelier sent to us from Japan.  Jenny burst out in laughter and informed me that she had lied to me.  She was not just passing through NYC, but rather drove down from Albany to present a gift to us.  At that point she and her sister Caitlin pulled out giant black garbage bags from their luggage and asked me to stick my hand into the bag.  I pulled out a handful of folded cranes.  She had sent out emails to many people asking to contribute folded origami cranes to my cause.  The goal was a thousand and Jenny received over 2,468 folded cranes from across the country.  She then mentioned that in the bags were only 1,262 cranes and the rest were sent to a person battling brain cancer.  She figured I would not mind, which she was correct about.  I was in awe of the gift.  I joked that I had no idea where I would put them but would figure something out.  Clover spearheaded that operation and turned our guest room into what is now lovingly called our Crane Room.  It is flourished with thousands of cranes and acts as a constant reminder that there are so many people out there who are there for me and are there to make sure I win this fight.  Confidence is key and right now I could not have any more thanks to all of you. 

I love you.

 

Clover:

When I wrote the Crane post, it was done in a moment of introspection and love for a simple act of kindness. Immediately afterwards, not much seemed to change. I went through my days folding cranes every other day, and every once in a while someone would tell me they enjoyed my post or were familiar with the story as well. And then as Christmas neared, a few wonderful things happened all at once.  

It started with a beautiful crane ornament in the mail. The woman who sent this to us is the mother of one of my very closest friends. She is a woman who has always welcomed me into her home and family with warm food and warmer hugs, so this was a very special crane indeed.

The very next day, I received a call from Ryan at 9:51am. “Clover. Something happened.” Alarmed, I asked him what was the matter. “Something came from Japan. You just have to see it. It’s crazy. I just sent you a picture. Just look at it.” He called me back practically while my phone was still downloading the picture file. “Did you see it?!” It was a stunning, intricately woven chandelier of miniature cranes cascading down the sides in all colors of the rainbow. As Ryan explained above, Suki’s mother, who lives in Japan, had mobilized around 30 of her friends to make this dazzling work of art. And as we stared at the crane chandelier, I thought, wow. Someone reads our blog.

The very next day, Ryan and I received an email from our friend Jenny O’Connell (of the aforementioned crane necklace), asking if we were free for lunch the next day. You know what happens next. This beautiful lady, her wonderful sister, and all you beautiful, wonderful people folded thousands of cranes, each alight with the hopes and wishes of wellbeing for the light of my life: my strong, incredible, larger than life fiancé Ryan West.

Although I have tried valiantly, words cannot properly describe how much I am moved by the actions of all of you. Thank you for continuing to fight the #ryfight.