#RyLove

Last night, hundreds of people laughed, drank, and danced their hearts out to the beat of Gloria Estefan in a valiant effort to keep tears, heartbreak, and total devastation at bay. As the morning sun breaks I can’t help but think, “Ryan did it again”. Even in his absence, he managed to imbibe an entire bar and hundreds of people with his wild, giving, fun-loving spirit. The past few days have been a complete blur of uncontrollable laughter at his past antics, uncontrollable tears at his passing, the constant love of friends and family intertwined with plummeting into moments of depressing solitude. But last night brought so much into clarity. Ryan West was (is) the love of my life, close friend to many, trivia master to hundreds, King to entire cities, and legend to many, many more populations to come. But his true gift was as a great connector. His entire life, he has brought people together through parties, games, ultimate, and trivia, and created friendships and memories that will last lifetimes. You may think I am exaggerating the extent of his reach, but this memory box I hold in my hands would say differently. Yesterday, I saw so many who loved him put distance, work responsibilities, life responsibilities, personal issues all on pause to reconnect with old friends and connect with new friends. I saw old loves and strangers alike giving each other hugs, acting brave and smiling together in the face of Time and Death itself. Ryan loved being at the center of attention, and made sure we would all remember him by burrowing himself deep into the furrows of our hearts. Last night was one of the memory books, sure. But in true Ryan West fashion, I hope that last night will also engender and reinforce relationships that will carry his love through all of our lifetimes.

Here is a quote from one of your memories:

I’ve heard some say that he was a workaholic, but my experience of Ryan’s work was him choosing to be with the people he cared about.

I love you all. Keep an eye out for the After Party. :)

-Clover

 

The Belfry

The Belfry

His Majesty Ryan Tremper West, first of his name, passed away peacefully in his sleep in the early morning hours of Friday, April 21st.

The outpouring of support from friends and family since his diagnosis on September 21st 2015 was a constant source of uplifting positive energy to help him continue the fight, and he was always grateful and often humbled by the generosity of everyone.

How do you memorialize a man who inspired and entertained us for so many years?  In the tradition of this great man, there will be an After Party. We will try to do his legacy justice, but recognize that the best organizer, event planner, and MC was Ryan. Look for updates at the blog, Facebook, and by word of mouth for this upcoming celebration.

For now, many of you will be feeling many things. This is healthy and good. You may have an instinct to send flowers, food, condolences, and other normal, socially acceptable practices for the mourning process.  But remember, this was not a normal man. Use this as an opportunity to tap into your creative side, and think of something out of the box inspired by Ryan.

The party that was planned on Sunday at the Belfry is still on.  We can drink and reminisce and brainstorm ways to memorialize him.


Please respect Clover’s privacy in this time, and continue to direct any questions to Feetch at sglauser@gmail.com or 315-391-3276

Important Update: by Feetch

Dear friends and family,

Sometimes there are ways of saying things that can soften the blow.  But, we're too tired for that right now. Ryan has entered hospice care at the hospital. 

The good news is that now he can get needed meds through IV, be hydrated, have the help of the hospital staff, and everyone can have the opportunity to visit - BUT DO NOT DROP BY UNANNOUNCED. To make sure that hundreds of adoring fans don't overcome the entire hospital, we've set up a shared Google document where you can sign up for a timeslot. This shouldn't really have to be said, but don't be a jerk and take up all the slots, or add slots, or delete someone else's name, etc.

Remember that this is a difficult time, and if Clover or Ryan are not feeling up to visitors, or if family members need to make urgent visits, they may request that a time slot be removed, or you may be asked to come another time. If you have any questions, please contact Feetch at 315-391-3276, and he will coordinate with you.

I know that everyone is excited for the party for Ryan on Sunday at the Belfry. Unfortunately, this change splashes a little cold water on that, but we've come up with a contingency plan. We will still at the Belfry, and as the hospital is just a few blocks away, people will be brought to visit in small groups. As we know quite a few of you are traveling, we will try to prioritize accordingly. The rest of us can drink, be merry, and tell our favorite Ryan tales together while waiting to go spend time with him. We will come up with a way to make this fair/fun/competitive or SOMETHING (don't worry) so please meet at the Belfry as planned on Sunday.

We want to thank everyone for their support and understanding.  Please try not to inundate Clover with texts as she is dealing with enough right now. She has politely hinted that she hates being asked questions like "But how are YOU doing?" and told things like "Well, just make sure you take care of YOU" because OBVIOUSLY guys, she's not doing great, but she's FINE and yes, she KNOWS she's supposed to take care of herself, but there will be time for that later.

If you find yourself in an awkward situation where you feel bad and you want to help but you don't know what to do, Courtney has generously donated loads of her children's laundry that will be in the room and need to be folded. Fold some clothes, be useful! This is not a joke. 

Once again, thanks for your love, help, and understanding, and we hope to see many of you this weekend. The Google doc to coordinate visiting is here:

https://docs.google.com/spreadsheets/d/1rauih59bhlSLWRum4Q64m7tw6t64LiNJTXKYP89aaV0/edit?usp=sharing

 

Some Helpful FAQs:

Q: OMG why does he look like that?

A: Because he's had stage 4 cancer for a year and a half…

 

Q: But he was fine the last time I saw him

A: Yes, it has sadly been a rapid decline

 

Q: But Clover, how are YOU doing?

A: Please don't ask this question (see above).

 

Q: Why are his feet so fat?

A: It's a symptom of his liver issues - he has lots of tumors in his liver

 

Q: What does the yellow armband mean?

A: It means that he is at risk of falling – Do not try to get him up by yourself, call a doctor, nurse, or orderly immediately.

 

Q: What does the purple armband mean?

A: It means do not resuscitate – Don’t be a hero, if something happens, call a doctor, nurse or orderly, and do NOT immediately jump in and start CPR. Make sure someone in the room calls Clover immediately.

 

Q: What does the white armband mean?

A: That’s how the nurses confirm his identity. Don’t steal it please.

 

Q: Who made all these cranes?

A: You know who you are.

 

Q: Why are you guys smiling in the pictures? 

A: Because Ryan is a fun guy, so smile and have a good time, especially if he is awake. For the same reason, if you feel the need to cry, there is a family room just across the hall that you are able to use. If you need Kleenex, the nurses are very accommodating.

 

Q: Why didn't you tell me that it was this bad?

A: It has sadly been a very rapid process. Also, Ryan has a lot of pride, and wasn't super stoked about it either.

 

Q: Where is the bathroom?

A: Behind that sliding door right there. Please refrain from pooping in it, as it is a small room with little ventilation. There is another restroom to the left at the end of the hall, on the left, if you need some privacy going #1 or #2. 

 

Q: What can I do to help?

A: Fold that laundry over there.

 

Memories

I just want to take a moment to thank everyone for your thoughts and support.  You mean the world to us. Many of you have reached out to ask if there is anything additional you can do. And along the same vein as Feetch's post below, I thought of one request: Please send us your memories. Any happy, sad, hilarious, ridiculous, unbelievable memories you have of a time you shared with Ryan would be much appreciated by both of us. If you are of a more literary nature and prefer to send haikus, odes, songs of praise, puns, jokes or love notes, please feel free to send those as well. Please send them all to ryan.west.fundraising@gmail.com. Though I may not immediately respond to your email, rest assured that I will read each and every one of them to Ryan so that he can relive every glorious moment he has shared with all of you. If you’re like me and sometimes really hate the computer-based world we live in, rumor is there may be a memory box at the party next Sunday, so feel free to bring any written memories then as well.

 

Much love,

Clover

Guest Post: Stephen "Feetch" Glauser

Think back to your first Ryan West experience.  

Perhaps it was in beautiful Albany, NY after a shitty frisbee tournament, and you were in college. You're underage, and you're dumbstruck because there is a band, and tons of people have their clothes off, and you don't know who (or what) you're making out with. You can't believe that a college party can look like the movies you love (remember, it's the early 2000's and you love Van Wilder and Eurotrip

Or it was a theme party, and you've just been handed a mission that you need to complete before the night is over, but before you can read it, it's ripped from your hands and set on fire because it was someone else's mission to make sure you don't complete yours.

Or maybe it was New Year's Eve in New York, and there's a band, photo booth, and videographer. And you turn around, and as you're watching, women in heels and formal dresses pull at each other's hair because the coat check lady bounced, and you have your first "only in New York" moment. 

Or maybe it was just a house party, but you're on a rooftop in Harlem, and they're playing beer pong but it's with mimosas, and instead of balls, it's strawberries, and there's a firepit, and they're cooking paella on it, and someone has a deep fryer for deep fried oreos, and there is a projector and movie screen, a bunch of inflatable kiddie pools to sit in while you watched movies, and sure, this may be a combination of any number of parties he threw, but you get the idea.

Maybe it's your weekly Trivia get together, where you meet up with your friends and are entertained by the charismatic, well-spoken young man without a lisp at the microphone, but as you're listening you realize oh wait, he does have a lisp but is somehow able to make it disappear when he's talking into the mic, and you wonder, if he can do that, why doesn't he talk like that all the time? Who is the type of person who would DO that?

The point is, this is a man who has given us a ton of experiences and made them memorable (if only to make them forgettable by the sheer quantity of booze served at any of them). 

As you all know, Ryan's having a tough go of things these days (and if you've been in a cave for the past year and a half, catch up). So we're trying to give him some experiences back.  He's had courtside Knicks tickets, he'll be going to SNL, and we've got ringside tickets to a boxing match, but somehow, that seems paltry compared to everything he's given us. Some of these things are donated, but other things cost money, so if you've ever had a good time at an event thanks to Ryan, throw in some money to help give him a good time.

Now for the #realtalk. This shit sucks - but when you're diagnosed with cancer, no one will give you life insurance.  This often means that the people you leave behind are stuck with bills while in mourning. Any of the money raised here that can't be used for Ryan's bucket list, will be saved for future use towards a memorial, FUNeral, burial, and all the stuff that sucks about cancer. It sucks enough to watch a loved one suffer, but to then have the added stress of trying to pay for those services while mourning, would be terrible. 

Continue the #RyFight at: https://www.youcaring.com/ryan-west-450543

That Moment When...

The past few months have been hard. And after a few months of chewing on the cuds of When Breath Becomes Air, one thought kept circling my brain: How did Lucy Kalanithi do it? How did she get through the experience, not only in one piece but with enough peace of mind to talk about her late husband over and over again, on talk shows, at symposiums, at TED talks? How did she answer deep, penetrating questions about her past life without breaking down?

I know I compartmentalize. I get through my day at work, push my thoughts away and manage to still enjoy work for the most part, I hold it together at doctors appointments and try to shield my husband from each new hit, I come home to take care of him each night and my heart breaks all over the place, but I get through it. And I take things day by day.

But I wondered, how did she get through it all? The effort I put in to maintain even my flimsy show of competency and “strength” already seems too gargantuan of a task.

So two days ago, I began a light Google search for contact information for Dr. Kalanithi. I knew it was a long shot, but it distracted me just enough to occupy me for the evening. And then late last night I saw an email in my work inbox: “Lucy Kalanithi Lecture”. How fortuitous. By some miracle and with the help of some incredibly generous and wonderful co-residents, I was able to make it uptown in time to catch the end of her talk. She spoke about her husband Paul, she took questions from the audience, she read an excerpt from an essay she wrote for the NY Times. And then the lecture was over. And I knew I had to go up to talk to her. I had it mostly sketched out in my mind – I would calmly introduce myself as a first-year resident, and say that I was going through a similar situation, and were there any resources she found particularly helpful – or something along those lines. Above all else, I would keep my composure, as I had time and time again. I waited on line with everyone else eagerly awaiting the chance to speak with her. And then I got to the front of the line, I looked at the petite woman standing in front of me, and I looked into her clear, blue eyes, and I completely lost it. I think I blubbered out something along the lines of “I’m Clover”, “first year”, and then hysterically kept asking, “how did you do it?” Well, needless to say, this wonderful woman saw through my extremely thin façade and sat me down to talk. I was miserable and ecstatic and terrified all at once, and somewhere in there, lost among the tears, I felt a tiny amount of catharsis as well. I had thus far prided myself on not crying in front of others, but somehow managed to bawl my eyes out in front of at least 20-30 strangers anxiously hanging around the stage. Someone offered me a tissue. I took three. She asked me what hurt the most – I honestly answered, “I have no idea”. Everything hurts.

Mini Chemo Update

At the beginning of March, Ryan had a CT scan as part of the phase 1 trial, which revealed that despite our best efforts, the cancer is still growing. The good news? We no longer have to commute over an hour to New Brunswick, NJ. The bad news? Well, I think that can be inferred.

And so our options become a little more limited. We are now on a different chemotherapy called Lonsurf (aka TAS-102). Lonsurf is a combination of trifluridine and tipiracil, which is indicated for patients with advanced metastatic colorectal cancers who have already run the gamut of other standard therapies, as Ryan has. With this, our goals are to stabilize the cancer rather than for regression.

For you biology nerds out there, trifluridine is a nucleoside analog which becomes incorporated into DNA during DNA synthesis and inhibits thymidylate synthase (an enzyme used to synthesize thymidine – one of the nucleosides used to make up DNA). This brings DNA synthesis to a screeching halt, effectively stopping tumor cell growth*. Tipiracil, on the other hand, inhibits another enzyme (thymidine phosphorylase) which would otherwise try to break down trifluridine. Interestingly enough, the principle investigator who initially ran the phase 2 trial comparing Lonsurf to placebo also noted higher levels of thymidine phosphorylase in aggressive disease. References are below for more information.

The cancer also seems to be the worst in the liver at this point, so we are looking to alleviate the tumor burden and hopefully decrease abdominal symptoms with more local liver-directed therapies (specifically, radioembolization with yttrium-90 – there’s an element to get your high school chemistry teacher excited!). For now we are taking a look at how well the liver is functioning, and taking things from there.

-Clover

 

*If this sounds familiar to you, you’re right! At the very beginning of this journey, we initially started with a medication called Xeloda, which is the prodrug of 5-FU, another cytotoxic antimetabolite. He did also later get 5-FU itself through the handy chemoport in his body. How is trifluridine going to work any “better” than 5-FU when we failed that already, you ask? Well, one way it’s slightly different is that trifluridine is activated by another enzyme (thymidine kinase), and directly incorporated into the DNA, causing direct, hopefully long-lasting DNA damage. There’s also some thought that the other ingredient, tipiracil, has some antiangiogenic effects – basically, this may decrease blood supply to tumors, which tend to be quite bloodthirsty.

 

References:

Yoshino, et al. TAS-102 monotherapy for pretreated metastatic colorectal cancer: a double-blind, randomised, placebo-controlled phase 2 trial. The Lancet. 2012;13(10):993-1000. 

Mayer, et al. Randomized Trial of TAS-102 for Refractory Metastatic Colorectal Cancer. NEJM. 2015;372:1909-1919.

Kim, et al. TERRA: A randomized, double-blind, placebo-controlled phase 3 study of TAS-102 in Asian patients with metastatic colorectal cancer. Ann Oncol. 2016;27(suppl_6):465PD.

 

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.