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.

CAT Scan Results Are In

Ryan:

                     Because we're really original.

                     Because we're really original.

When I met with Dr. B this week, we took some time to review my most recent cat scan.  This is something that has left butterflies in my stomach for a while.  While everything up to this point has been extremely positive (ie. blood work, markers, how I feel in general, etc.), the cat scan would show definitively whether the cancer has shrunk and if the chemo is working.  I was surprised when I didn't receive a call from my doctor with any news, since he typically calls me right away with good news.  I chalked it up to the holidays and that he was probably enjoying some time with friends and family.   Then came my appointment.  It was probably the most anxious I have been since being initially diagnosed.  In my mind, this was a crucial point in my treatment.  It was time to find out if all of this has been for naught.  I was scared, excited and unbelievably nervous all at the same time.  Clover came with me to the appointment, which is something I strongly recommend to anyone that has to see a doctor regarding serious news (not necessarily Clover, but anyone who can lend another set of ears.  Though in my opinion, she is the best at it). I heard exactly what I wanted to hear.  The cancer cells have shrunk throughout my body.  The treatment is working.  Dr. B listed some examples of specific tumors and how much they shrunk by.   The examples explained in the cat scan showed shrinkage of I think around 25%-50%.  With this, the weight lifted from my shoulders and a large sigh of relief was finally exhaled.  I know that the battle is far from over, but I am glad to see we are making progress.  

 

Clover:

I’ve come to realize that there is a strange duality between me and Ryan. And not because we are literally two individuals. I mean in more of an opposing yet complementary yin/yang sort of way. This was partially addressed in a previous post discussing Ryan’s and my views on Positive Thinking. Most days, I find myself hanging on to the ankles of a happy-go-lucky Ryan Balloon, trying my hardest to keep contact with our tether on the ground. However, when we are faced with seriously scary, potentially (further) life-altering scenarios that actually threaten to toss Ryan back down to Earth, I find myself taking on the Pollyanna role instead. In the week prior to his appointment, Ryan asked me several times what I thought the CT results might be. Though he kept his tone light, it’s hard to keep that gut-crushing type of apprehension from showing through. I knew because I felt it too. But of course we couldn’t both be insane with worry for a week, so I began to emit the famous Ryan West Positivity. The labs have been good, you're gaining some weight, you've got more energy, you're feeling good, hopefully the CT will reflect that...

As you read in Ryan’s post above, luckily it was very good news. Though the report does not list every single tumor, it does list the more significant ones, and the majority of them seem to have shrunk quite a bit. The report also shows findings suggestive of shrinkage of the primary tumor as well. Somewhat ambiguous, expectedly so, but still a damn good result. The plan moving forward, providing everything works out with insurance (there is a slight kink apparently with insurance being accepted with the hospital), we will continue with 2 more cycles of chemo, followed by consultations with a liver specialist and a radiation oncologist.

And so: Onward and upward.

Photo credit goes to... I think Pinterest.

Photo credit goes to... I think Pinterest.

                         I just really enjoy this gif.

                         I just really enjoy this gif.


New Digs

Please Note:
FYI there will be a ton of new updates coming shortly.  We have been busy with the holidays and all that other good stuff, but we are back and ready to rumble! 

First Post of the New Year. 


Prior to the year's end, my Oncologist informed me that he recently accepted a new position at NYU and would be moving there starting in the new year.  Like most people, change scares the crap out of me.  We spent and are still spending a good amount of time ensuring that everything transfers over smoothly.  Insurance and all that jazz can be a complete pain in the ass, and it is important to stay on top of everything to ensure you do not randomly get a $5,000+ bill for a check up. 

This week was my first week at the new location, and it has been quite the transition.  The pros so far have dramatically outweighed the cons.  I have decided to list them out for anyone that is interested:

Pros:

  • Being treated at an academic research facility like NYU's Permutter Cancer Center allows so much more opportunity to find new ways to fight and beat cancer. (Clover is especially happy about this)
  • They have snacks, coffee and tea in the waiting room and the infusion room.
  • The infusion room was an actual private room dedicated just for me with a wonderful window view
  • There was a TV, though I did not use it
  • There is an on-site masseuse who provides a short massage to people receiving infusions.
  • There is an on-site nutritionist who met with me to discuss my dietary habits and ways to improve them
  • The staff at NYU has been absolutely stellar.  Every person I have met with has been pleasant and wonderful to deal with. 
  • The equipment being used seems to be top notch and more advanced than what I was previously used to.


Con's

  • Private practice provided a certain sense of intimacy.  When I arrived, the same faces welcomed me and I was checked in and hooked up to an IV within minutes.  NYU is dramatically larger and so there is more dead time spent in the waiting room.
  • I do miss the staff that was at the previous location. They were fantastic people and I wish them the best on their future endeavors.
  • Everything seems more corporate, probably because it is. 
  • The infusion chair is not as comfortable.


Overall, I could not be happier to now be associated with NYU's Perlmutter Cancer Center.  I feel that there is now an even bigger group of people working together to assist me in this epic battle against the C-word. 

Chemo Sucks Sometimes

RYAN

My chemotherapy schedule has become pretty routine at this point.  I visit my doctor on Monday afternoons, 2 weeks on and 1 week off.  During that time, I sit in a leather recliner getting random liquids pumped into my veins.  The plus side of this is that it is an excellent time for me to get some work done.  The nurses have become accustomed to my requests and will already have a desk set up next to my chair for my laptop and supplies.  I do not know the exact names of everything I am receiving offhand, however I know one of the items is meant to help prevent any nausea and sickness I would otherwise get from the Oxaliplatin.  While it prevents any nausea, I do get some side effects of nausea, like the sweats.  Pretty much the chemotherapy renders me useless for the rest of the day.  I am loopy and tend to just want to sleep.  This week was a new level of exhaustion as I was pretty much out by 9pm.  Notes from the doctor: Blood results look great, blood pressure was slightly lower than usual, and he does not suggest I drink breast milk to help combat cancer.

Today I feel pretty good. Not 100% but significantly better than before.  Just in time for the most hectic week of the year.  Let’s hope I’ve got what it takes.  Below is Clover’s more educated take as to why I am loopy and tired after chemo.

 

CLOVER

…thanks Ryan.

You guys can blame me for the delay in this week’s post, because honestly I didn’t really have a good explanation for why Ryan felt “loopy and tired” other than … chemo sucks.

My inability to accept posting that succinct and unenlightened answer led me to research the possible mechanism(s) of post-chemotherapy fatigue. Fatigue is a common complaint attributable to cancer itself, however fatigue is also a very common side effect of chemotherapy, affecting 82-96% of patients receiving treatment(1). The fatigue experienced in cancer as well as during cancer therapy is different from that everyday tiredness experienced on a daily basis because this fatigue may not resolve with sleep or rest. Chemotherapy may cause fatigue through a myriad of ways, both as a direct side effect as well as through secondary means. For example, Ryan’s blood count is checked every other week for signs of anemia, which is a common adverse effect as well as a significant potential source of fatigue. Another secondary cause may be poor nutrition due to nausea, vomiting, or lack of appetite. One proposed mechanism for the direct effects of chemotherapy on fatigue is actually the same as the mechanism behind fatigue from cancer (2). In cancer, tumor cells are thought to release proinflammatory cytokines (basically, messenger cells that usher along immune responses) to promote an inflammatory response, which is somehow thought to promote tumor growth (I’m still not 100% clear on how exactly this occurs). Some chemotherapy drugs, including cisplatin (the ugly cousin drug of oxaliplatin) are thought to increase these cytokines as well, which have been associated with sleep changes as well as chronic fatigue. Don’t ask me how those exact same cytokines don’t then promote a tumor growth as well – this is some seriously circular stuff and I haven’t quite had enough sleep to slog through it. That question in itself may be a logical fallacy. However, I will say that cytokines aren’t really the good guys or bad guys here. They’re just the messengers. Don’t shoot the messenger. We have those guys gossiping about even when we just get a papercut (although papercuts truly are evil).

I guess my takeaway point from this somewhat confusing post is that there is still a lot that we don’t know about the mechanism of a process as nebulous as fatigue, not to mention cancer-related fatigue.

 

 

1 Iop A, et al. Fatigue in cancer patients receiving chemotherapy: an analysis of published studies. Annals of Oncology 2004;15(5):712-720.
2 Ray M, et al. Fatigue and sleep during cancer and chemotherapy: Translational rodent models. Comp Med 2008;58(3):234-245.

Different Fighting Styles

Ryan:

Is it possible to be too positive? This is not really a rhetorical question but rather one I am posing to anyone that reads this blog.  When I was first diagnosed with cancer, one of the biggest things that people would tell me is to stay positive.  For the most part, this is something that I have no problem doing.  I am generally a pretty upbeat person and tend not to dwell on the negatives.  During this new phase in my life, I have found myself trying to find the silver lining in any news that I receive.

Here is an example.  A while back I had a liver biopsy taken to run tests on the cancer and see what possible treatments can be used down the line to fight it.  This procedure was not pleasant.  I was stabbed in the chest 3 times with a needle that sucked out small pieces of my liver.  Unfortunately, Clover and I recently found out that they were unable to run all of the tests on the samples because only 1 of the 3 samples taken were malignant, and they had neglected to run the more important tests first, and would thus have to take another sample (and stab me again) at some point in the future.  While Clover reacted to this by looking like an old Warner Bros. cartoon with steam coming out the ears, I simply turned to the doctor and Clover and said "Well isn't it kind of good that 2 of the samples they took weren't even cancer?"  In my mind, they had taken something they thought was cancer from my body and were wrong, so maybe there isn't as much cancer in my body as the scans show.  I’m not necessarily looking for a simple way out but I am trying to make the best of the information I am receiving.  

The reason why I am writing this post is because this past Monday, I had blood work done checking various markers in my blood to keep an eye on the cancer and how well the chemotherapy is going.  Clover will be able to fully explain the markers and probably go into further detail about the liver biopsy below, because to me it is a bunch of acronyms that I do not fully understand yet.  These markers have been tested 3 times since I started chemotherapy, and there has been a dramatic drop in the markers.  In some cases over 50%.  Now this does not guarantee anything, however it is a good sign.  While I am extremely elated with the news, Clover chooses to keep her feet on the ground.  She explains that while she is extremely happy with the news, she does not want to get her hopes up and build up false expectations.  I am not sure what way is better, but I do know that together it works for us.  I will be the one floating on air with every piece of news that can lead me to believe that I will beat this thing, while she sees everything for exactly what it is and tirelessly works with the doctors to make sure everything is being done to ensure my recovery.  

I have dreams regularly that I will go get these CT scans at the end of the month and the doctors will come into the room and say that I beat cancer in 6 months.  Will it actually happen? Probably not, but it's dreams that make up the future's reality.

 

Clover:

It’s true. I am definitely more of the realist, while Ryan is the dreamer. I hope the dreams prevail.

I’ll explain my side of the story with bad news first followed by good news.

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So as Ryan stated earlier, I looked a bit like an apopleptic cartoon when he told me that the liver biopsy did not yield the desired results. The reason for my dissatisfaction was multifold. First, there are quite a few masses in the liver, and though some are small, two in particular are pretty sizeable. Unfortunately, since the technicians were aiming for malignant tissue, it wasn’t necessarily the case that the seemingly malignant tissue was benign, but rather that they did not catch the tissue they needed. This bit of technical error, though not completely uncommon, was a bit difficult for me to grapple with because this procedure was done under CT guidance. Which brings me to my second point. The benefit of using the CT for guidance of the needle should to outweigh the risks of irradiating Ryan further, and though repeated CT scans for staging won't necessarily expose Ryan to enough radiation to be an independent risk factor for other malignancies, it does makes me wonder whether use of ultrasound guidance would have been a more prudent alternative for us to consider. Third, we recently started a third chemotherapy agent called Avastin, which works by blocking new blood vessel growth and essentially cuts off oxygen/food supply to the cancer. We held off on the Avastin until after the liver biopsy because Avastin can result in an increased risk of bleeding as well as impairment in wound healing. In order to take another biopsy, the Avastin would need to be stopped 4-6 weeks prior to the procedure. Since Avastin has been found to be very beneficial in metastatic colorectal cancers, we would not consider stopping it just to take another biopsy. Fortunately, we had strongly pressed the gastroenterologist to order the same genetic tests on the primary tumor specimen, so we were able to get back some of the results that the lab was unable to run on the liver specimen.

Now the good news. Yes, it appears that the markers that are used to track tumor progression have decreased. The tumor markers they are tracking are CEA, CA19-9, and CA125. They are a bunch of acronyms, and to be honest knowing them probably won’t blow your mind. However, as Ryan said, they appear to have decreased dramatically. For example, the CEA (carcinoembryonic antigen) was 3,683 on 10/1/15, then 5,135 on 11/2/15, and has now dropped to 2,424. To put it in reference though, a normal level of CEA is less than 3.7. So, while it is a large drop compared to previous values, which is fantastic, I am still waiting for the CT scan at the end of this month to create the full picture. No, my message is not as uplifting as Ryan’s. However, I think it is important that I remain cognizant of all of the “what ifs”, even while my better half feels much better clinically. It is still, as far as we know, Stage IV cancer. It is still an extremely serious condition. And while I don’t want to bring anyone down, I do feel the need to remain vigilant about any changes. I don’t know how quickly things change with Stage IV cancer. I have no experience with it, and hopefully none of you out there know either. I just know that I want to be prepared for anything and hopefully never need any of that preparation. Ryan needs to walk among the clouds while I dig down in the dirt. But ultimately I really hope that he is right. Mostly because Ryan West loves being right. :)

Starting to Work Out

This is the 2nd photo I have ever taken of myself at the gym.  The other photo was of me doing dumbbell curls while drinking eggnog. I did not take this photo to brag or boast, because as I look at it, I think quite the opposite.  I look at this photo and see a shell of what I used to be physically.  I have dropped around 35lbs and I would wager that a good chunk of that weight was muscle.  I was a person that worked out fairly frequently and maintained a decent build.  Friends would joke that I had "glamour muscles", which wasn't entirely false.  My chest, shoulders and biceps would make progress while my stomach would fall victim to weekends of drinking and late night food.  After being diagnosed, going to the gym fell quickly to the back burner.  With the combination of sickness, doctor's appointments, and lethargy, I found myself falling out of the weekly habit I once maintained.  Last week was my first visit back to the gym in a long time, and it was a much needed reality check.  While I cannot push myself the same and have to be extremely mindful of what I do now, I can still work out and I can hopefully rebuild some of what has been lost.  This week I will start working out with my good friend Chris Wicus of Wicus Strength.  He is an absolutely fantastic trainer and I know that I am in capable and watchful hands every step of the way.  I look forward to each week and hopefully making progress both with fighting cancer and building a healthy body. 

Infusion Update

I am a little late on the update, however here it is.

Last week, I went in for yet another chemotherapy infusion.  While I have become somewhat used to these, I know it is not really something that anyone should become "accustomed" to.  I have never been a big doctor guy.  If I got sick in the past, I just dealt with it myself.  This was not due to some bad experience with professional medicine, it stemmed more from stubbornness and the feeling that the cost never really justified the results of the visit. For the most part, I was generally a healthy person.  I would rarely get sick and a doctor's visit was usually reserved for an annual check-up or due to some sports related injury (which occurred more than it should).  Thankfully, it was Clover that persuaded me to see a doctor back in August which led to the detection of my cancer.  Now I have become accustomed to going to see the doctor at least once a week.  It is strange how quickly things can change. 

There is nothing really new to report on my end regarding my progress.  Clinically, I am doing better as my appetite has returned and I feel better than I did prior to treatment.  This most recent infusion was a little weird as they went through a vein in my hand. It was kind of funny - the nurses apologized for having to go through the hand because they know I like doing work while getting the infusion, and they were worried that the IV might hinder my typing.  One of the main changes to note is that the cold sensitivity in my hands has increased.  I am now wearing gloves in November when I used to be able to partake in a snowball fight bare-handed. 

For anyone that reads this blog, thank you and I appreciate you checking in on my progress. 

The Next Cycle

Ryan:
This week, I started the second cycle of Chemotherapy.  I spoke with my oncologist who inquired about any side effects I have experienced and my overall health.  Prior to starting chemo, my weight dropped dramatically and I became anemic.  I am happy to say that my labs this week showed that my iron levels are up to normal and that I seem to have gained a couple pounds.  My appetite has returned for the most part and the side effects of the treatment have been minimal.  However, this week’s chemo session did introduce me to some new side effects that I have not previously experienced.  My hands have become unsteady and I see them shake more than what I think is typical.  Also my left arm was extremely sore after the treatment.  The nurse believes that this was due to a new vein being used for the IV infusion.  My cold sensitivity has increased, however that is likely something that will get worse with each treatment.  I am not at a point of needing gloves yet, but grabbing items from the fridge have proven to be more of a challenge for me. Clover will explain this further below. Finally, I have started to get some mild nausea.  It is nothing serious.  It just puts a damper on my day and makes me feel “eh”.  My overall message is that I am still going strong and chemo has dick on me. 

 

Clover:

As you may already know, Ryan is on two different chemotherapy drugs: Xeloda (oral pill) and oxaliplatin (IV infusion). We have been pretty diligent about noting any adverse effects with these medications (which luckily so far have been few), and as we come up on Week 4/Cycle 2 of treatment, we have a few things to be even more vigilant about.

The one we have been watching for with Xeloda is hand-foot syndrome(aka palmar-plantar erythrodysesthesia) which is a skin reaction that can occur due to leakage of some of the drug out of capillaries. It can present in the palms of the hands and soles of the feet as burning, itching, redness, swelling, dry skin, and at worst even cracked, peeling skin, blisters, ulcers and sores. Luckily, this has not been a problem so far, so we can keep holding hands comfortably.

With oxaliplatin, the main side effect is chemotherapy-induced peripheral neuropathy – basically the drug damages the nerves innervating distal parts of the body (hands, feet, fingers, toes). This can present in two ways. The less worrying and far more common side effect is cold sensitivity. With this, exposure to cold items (i.e. grabbing items from the fridge) can result in a painful or burning sensation. Ryan describes this as feeling like “freezer burn”. Cold sensitivity is felt by >90% of people on oxaliplatin. The onset is acute, meaning it comes on suddenly during or soon after the infusion, and tends to be somewhat transient, lasting for hours to days (though we haven’t really tested out Ryan’s tolerance since he noticed it). The more worrying side effect is a slow, cumulative peripheral neuropathy. It is less common (some studies say 30-50% of patients, some say 10-15%), and comes on later, and worsens with each subsequent dose. This may start out as numbness and tingling in the fingertips and toes, but it can progress to affect sensation completely and affect activities of daily living and gait – if you don’t know where your feet are, you tend to have a lot of problems walking around. These symptoms are more worrying because they tend to be permanent. Some evidence shows that the severity of the neuropathy may lessen within a year of stopping treatment with oxaliplatin, however some vague fuzziness of the fingertips/toes will likely remain.

On that note... so far so good! Wish him luck with this next week of chemo!

 

Close to Home

Last week my uncle passed away.  As you get older, death becomes something more and more real and equally as scary.  I remember when I experienced the death of a loved one for the first time. I was in high school when my grandfather passed away.  I was young and didn't necessarily know how to react.  I was at an age where I was not necessarily close with many extended family and my biggest concerns were how to impress a girl or pass an upcoming test. 

Since that point, I experienced the deaths of more friends and family, and while I mourned their loss, there was still something off.  I had the ability to make it feel more like pretend than real and use that as a tool to cope.  Now that I am dealing with cancer, death has become a real thought and seeing the loss of a family member hits closer to home.  It also does not help that my uncle passed away due to cancer.  To see someone lose a battle to something that I am fighting every day is a tough hit to my confidence.  While his cancer was completely different and caused by completely different reasons, it still resonates with me. 

Being at his wake helped me realize some things.  While death has become more real, I am not ready for it.  I will be the one to decide when I am ready.  Until that point comes, I will be fighting with every ounce that I have, while cracking jokes and enjoying life with those close to me.  I will miss my uncle Rusty and remember the fond memories I have of him as a child, and I will try to view his struggle with cancer as a stepping stone to my own growth and progress. 

Cranes

I want to take a moment to share a story with you. It is a story of tragedy and hope in equal parts. When I was in elementary school, we read the story of Sadako and the Thousand Paper Cranes. The book is based on the true story of Sadako Sasaki, who was 2 years old when the atomic bomb was dropped on Hiroshima in 1945. She survived with minimal injuries and continued to thrive as a happy child. Then, at the age of 12, she developed masses on her neck and behind her ears and purpura on her legs. She was subsequently diagnosed with leukemia and hospitalized on February 20, 1955.

While in the hospital, she learned of the Japanese legend that whoever folded 1,000 origami cranes would be granted one wish. According to folklore, the crane is a mystical creature believed to live for 1,000 years and is seen as a symbol of happiness, longevity, and good luck. As the story goes, Sadako worked day and night making cranes until she was too weak to fold any more. She managed to complete only 644 cranes, at which point her classmates took it upon themselves to finish the task*.

I was reminded of this story last weekend, when I leaned in to hug a friend and noted a silver necklace in the shape of an origami crane gracing her neck. She told me that it was a tradition in her family, and that she wore it as a wish for me and Ryan, as she had done previously when her own family member was ill. I was touched, and we spoke about the story for a bit and then turned our attention to celebrating our friends’ wedding.

Later that evening, she approached me and slipped the necklace around my neck. “I want you to have it. I have all of my hopes and wishes for you in there, and I want you to have it.” Thinking about that moment still brings a lump to my throat and tears to my eyes. With that, I start this first crane. Thank you, Jenny O. You have a beautiful soul.

   *According to Sadako's family, she completed between 1,300-1,400 cranes, and her classmates also completed 1,000 cranes in her honor, which were buried with her when she passed on October 25, 1955.

 

*According to Sadako's family, she completed between 1,300-1,400 cranes, and her classmates also completed 1,000 cranes in her honor, which were buried with her when she passed on October 25, 1955.

-Clover