Ok, It's Been A Long Time

I know it's been a long time since I posted. Have you ever fallen behind on something? Meant to watch those episodes of that TV show that are building up on your DVR, but just never really got around to it? Were really into the flowers you planted in April, but by August you never water them anymore? Haven't gone to the gym in two months, and the thought of going back again seems difficult... so you just keep not going? Yea, that's what happened.

Things have been good actually. We finally found a mix of drugs for pre-medicating that makes the treatments bearable. I haven't vomited, or run a fever, or shook uncontrollably for either of the May treatments... which is a great improvement. But oddly, with the treatments now easier, it feels like something is missing. That's probably because all the medications together cause me to black out for large periods of the treatments weekends... so hence, parts of my memory are actually missing. It's a great thing to not suffer, or to not remember it if you are suffering... but it still leaves an odd void. I think it's why so many people with bipolar disorder choose not to take their meds... there's something about swinging high and low that's preferable and makes you feel more alive than just flat-lining in a sedated haze... as difficult as those swings can be to handle. I never really understood that decision before now. Similarly, some women in labor choose not to take the epidural. Why would you choose to feel the pain when you could be numb and get to the same end?

Don't worry... I'm not going to stop taking the medications anytime soon. I know it's ridiculous to go back to rocking in bed with extreme nausea trying not to vomit... and remembering all the excruciating hours of it.

But just because the treatments have gotten easier doesn't mean the journey has gotten easier. I've become much weaker physically, mentally, and emotionally with each treatment... and that continues. This blog began light hearted and humorous, and I now realize that was my way of coping at that time (Not that there's anything wrong with that!) But I don't really have the energy or the mental state anymore to continue it. I'm in a different place. Not that I've lost my sense of humor/attitude at all... anyone who has hung out with me in the past month knows it's all still there, and that May has been a drastic improvement over April. But I just don't have the original desire to share as much... to dress things up humorously and entertain those who care about and support me... to help them see I'm doing ok during a difficult time. That takes an energy and an outlook I somehow lost along the way.

I only have 2 treatments left... which is awesome and exciting! Time really has flown by! Yet, something weird has happened now that I'm approaching the end. When I was a kid, I would play video games for months and months until I got to the last level/boss/challenge... and then I would stop. My brother always made fun of me for never completing what I'd spent so much time working on. When I wrote papers in college/grad school, I always wrote 90% of them, and then stopped. Once I felt the argument (the meat and potatoes) of it was done, I lost interest. Obviously I needed to turn in a full paper and wanted an A, so I forced myself to finish them completely... but the key there is, I forced myself to do it. The same thing is happening now. I should be thrilled to be so close to the end. Yet, I realized that I've gotten comfortable with the routine of cancer treatments... with the schedule of bouncing back each time... with how people treat me... with my identity as someone on this journey. Believe it or not, it's scary to actually have it end and enter a new unknown... even though that unknown is a healthier, happier lifestyle and exactly what I've been working toward for months. But I know I have to force myself to face the next challenge: the 4 weeks "break" that I get before radiation. No routine... no weakening... but yet still not 100% better or "old Ryan." I don't know who I'll be or what my days will be like. But I know that just like the challenge of the past 5 months, I have to face this one with the same courage and determination. It's odd to call a period of relief after a lot of suffering a "challenge", but it is.

So that's where I am right now... finishing up a phase, but not really good at finishing things... most likely because I'm always scared of the new unknown that comes after. I really don't think I saw this phase of the treatment process coming... ever. Then again, I never really saw cancer coming... so life is just full of surprises, no matter how much your try to enforce a routine or plan upon it. But I'm still going... and I'm happy (though this post may be more somber and serious than usual). And I'm almost done... which I know is a good thing, even if it's also, in some crazy unforeseen way, a scary thing.

New Month, New Attitude, New Man

So May came around... and something about the change of month (and a lot of thinking I've been doing) has really changed my attitude for the better, and I've been loving life a lot more!

On Saturday, despite AWFUL stomach cramps, I had brunch with my friend Josh, his mom (who was visiting from Ohio), and some of our friends. She was full of interesting stories from her colorful (read: extremely liberal) life.

After that I joined my friend Mike in Central Park with his boyfriend Anthony and some of his friends. It was a gorgeous day and felt so good to be outside doing something I always do in the spring and summer. It put me in a great mood, and I didn't let the stomach cramps or anything related to cancer ruin my day!

On Sunday, I decided that I needed a makeover, and it was time to go clothes shopping for the first time in 4 months! This time, it wouldn't be to buy the "chemo sheik" items, but rather to rediscover myself and my attitude. I decided that I needed to stop looking in the mirror and seeing myself as "cancer patient" and start seeing myself as "Ryan" again. I needed to rediscover who "Ryan" is. So I embarked on a spree throughout Soho, picking out pieces that reminded me of who I am and who I will be when this is all over. (Ok, so I splurged on some... it's therapy!)

After my day shopping, I met up with my best friends Mike and Matthew (and their respective significant others) for a great dinner at Agua Dulce, a Brazilian/South Beachy restaurant in Hells Kitchen that I'd never been to before. Again, a dinner like this is an activity I would normally do, and helped me feel "normal" and not "cancer patient"-ish. The restaurant was great, we had a blast, and it really left me on a high.

I felt physically great on Monday and Tuesday at work and managed to achieve some goals that left me feeling accomplished (always a good emotion).

And tonight, I had one of the most AMAZING nights I've had in a long long time! A client of mine, the Director of Sales at the Carlyle Hotel, invited me to be her date for the opening night of Judy Collins' new cabaret show at the hotel. For the first time in months, I got dressed up in suit and went to work (and it felt GREAT!) My "date" wasn't feeling so well this morning when I called her. She told me to find a friend to bring in her place so that I could still attend and enjoy the evening. My friend Natalie came, and we had a blast! Judy Collins has a voice that's effortless, expressive, and haunting. She really told some beautiful stories with her songs! It was an intimate cabaret show (maybe 80 people in the restaurant), and we were surrounded by celebrities like Al Pacino, Candace Bergan, and Betty Buckley (who was super nice and chatty with us). And the food was fantastic (I had the lamb chops, which melted in my mouth). The whole night came off magical (and free!) I walked home from the subway feeling like a million bucks, which is the first time I've felt that way in a long, long time.

I know I have a chemo treatment coming on Friday, and 3 more after that... and I know I'll face more tough days ahead. But with a new attitude and a reconnection to who I am (ok, and some new clothes and a free celebrity filled event), I'm much more confident facing those challenges. It's not just seeing the light at the end of the tunnel, it's seeing me there too. It's rebuilding my life (maybe a little early) and celebrating it. It's being grateful that after months of bad days, I'm finally having some good ones again!

A Brief Trip to Euphoria

When I was at NYU, I took a class in Destination Marketing. Part of the course work was a class wide project in which we developed a full marketing plan for a fictitious destination named "Euphoria". The project proved to be an absolute nightmare, and is notorious amongst my NYU classmates.

For my most recent treatment, my oncologist gave me a heavy dose of a new steroid in an effort to cut the awful post treatment side effects I've been struggling with. Before he gave me the steroid, I asked if there were any side effects. He said "Only one... and it's not so bad... it's euphoria." I thought "that's not so bad... I think I'll like this!"

Five minutes later when I was vomiting all over myself and the exam room, I wondered if the cause was A) Pavlovian/mental response to getting the chemo injection; B) a physical reaction to the chemo drugs themselves; OR C) the horror of "Euphoria" settling back into my life.

After that little spat (which I do believe was the result of cause "A" above), I did indeed travel to a mental land of Euphoria much better than the vacation destination that we created for class. I came home, sat on the couch, and watched TV for 2 hours. I even ate something! Then I passed out for 2.5 hours (my mother did as well... we both woke up when her cell phone rang). When I realized that it was 5:30, and my "horror response period" usually ends by 6... I started to think that maybe I'd averted misery this time around. Sure enough "Euphoria" lasted about 48 hours.

Then it was back to normal... and just as a reminder... normal is NOT that great. It's fatigue and nausea... and I'm discovering that I just get weaker and weaker with each treatment. My body takes one more beating, and so does my mind.

I'm noticing this more and more with work. For the first few months, I kept up with a lot of the normal types of projects that I would do at work. Then, a few weeks ago when things started slipping for my region, my boss told me that he expected me to work my hardest and do everything when I came in the door... and unless I notified him I couldn't physically/mentally/emotionally handle something, he expected it done. It was a big step for me, but an honest admittance when I started to realize there were things I just couldn't handle. And so, I began letting him know when I reached those limitation... tasks which I just didn't feel physically or mentally strong enough to tackle. This week, I told him I'm starting to feel like the 83 year old secretary who still works for the company, even though she can't use a computer and doesn't really contribute all that much. Nevertheless, she comes in to try to be helpful so that she still feels like she's doing something. That's exactly who I've become and what work now means to me. I woke up this morning with a "I can't" attitude about lots of things... but I forced myself to go to work, because something about it proves the "I can". I may not have accomplished a ton today, but what I did achieve proves that "I can" do at least something... certainly more than I thought I could.

I'm also going to start speaking with a therapist, since this work stuff ties into a lot of other issues that have been coming up as I get weaker and weaker. Everything from body image, to not reaching my potential, to feeling helpless as life goes by, to just being tired of feeling crappy all the time. I got a lot of stuff to work through, and so I'm going to start finding the professional help I need. Then we'll see what changes I make to help me get through the next few months.

On a lighter, happier note... I went to the ER last Thursday for a suspected blood clot in my left calf. They didn't find one... just muscle pain. But that's not really the lighter, happier note, or why this has become a favorite story of many of my friends. It more has to do with "Ryan Got His Groove Back". I met a hot, gay, ER nurse named Tim who flirted with me (heavily!) pretty much the whole time I was there. He told me I was "adorable", thought my scars were sexy, and made several inappropriate remarks about getting me naked. This is the most fun I've ever had in a hospital! He told me he was only covering my section while my nurse was out on lunch, and when I frowned, he offered to be my "private nurse" (there was definitely a wink associated with that). Even after the other nurse came back, he "kept me" and continued to come over from his section to check on me. The orderlies were even asking why he was out of his section. Tragically (and I mean that as dramatically as possible), I didn't get a chance to say goodbye to him when they discharged me. He was in his section, with his back to me, talking to a doctor. No chance to thank him... or to exchange numbers! I even tried a craiglist missed connections post... but still haven't heard from him. We may never meet again... but that was TOTALLY the highlight of my April!

Guess I technically went to Euphoria a day earlier than my treatment! ::snap!::

How Am I Doing?

"How are you doing?" is probably the most complicated and difficult question for me to answer right now... and yet, also probably the most popular one asked by people when they see me.

There is no simple or easy answer... and honestly saying "good" as we all seemed trained to say in response to that question isn't quite true/fair for me.

The complexity of the answer lies in that i'm a hodgepodge of physical/emotional statuses that don't always fall into "Good" or "bad".

For example, physically... My last treatment was the worst one yet. I had a fever of 103, was shaking uncontrollably, and once again vomited for about 5 hours. This left me dehydrated, gave me a terrible "burning" during urination (isn't that the best!), and did some major mental damage (more on that later). I've also been nauseous ALL week... and to a level like never before. All different times of day, SURPRISE, room spinning stomach clenching nausea. This is new, unexpected, and extremely annoying.

But physically... I also seem to be doing good. The symptoms of the cancer itself have disappeared and my doctor and I are both optimistic that my PET scan in 2 weeks will come back clear. So cancer's getting better... and chemo and my body are getting worse. Starting to see the complexity?

Mentally/Emotionally... yea, all over the place again. The intense physical toll of my last treatment left me scraping for happy thoughts, distractions, and inspirations to keep me "hanging on". And I had my first moment on this journey were I doubted if I could hang on... both for that day, and for 5 more treatments. I suddenly faced the "what if I don't make it?" question which I had never previously allowed myself to entertain. I'd constantly answered "I'm doing well, staying positive" when people had asked how I was doing... and for a while there, I really believe I was. Those answers were part of my game... the "things are as normal as possible, i'm fine, this is a speed bump in life" game. While that was a great strategy for the beginning, the game began to wear thin with the most recent, more difficult, treatments.

And so, while some cancer patients did the mental prep work upon diagnosis to face their own mortality and figure out what to do when physical/mental strength runs out, I suddenly found myself in the middle of a battle with no boot camp training. Because of the extremely high cure rate and my initial positive physical reactions to the chemo treatments, I was never going to have to think about those things that all other cancer patients process! HA! Fortunately I know that I may have lost the battle during that one moment, but that I have not lost the war. And that I have 2 weeks to prep myself and do all the "mental homework" until I face the next battle. I also invested in some new weaponry (a prescription for Ativan to fight the nausea and steroids to help with treatment day woes). I've got some great "war advisors" helping me refocus, rationalize, and dig out new sources of inspiration. I'm ready to say bring it on, but I'm hardly confident yet in the battle's outcome! Nevertheless, I know I just can't "give up"... but boy am I getting tired.

So how else am I doing? Well I went to a beautiful wedding of two great friends on Saturday night and had a wonderful time catching up with old co-workers I hadn't seen in years. I really enjoyed myself, and lived it up (though passing on those gin lemon fiz drinks during cocktail hour was SO difficult!). I was so happy to be there on such a special day for both of them. I guess I'm just happy to be... and to be healthy enough to enjoy being. I also enjoyed a free massage at the Carlyle Hotel today, which was very relaxing (after a rough week, friends with connections are priceless). I got slightly emotional at the very beginning of the massage when I realized that this was the first positive thing that I was doing for my body in a really long time. Every 2 weeks I poison my body and try to recover. This time I was honoring my body and "treating" it in ways that are completely opposite my "chemo treatments." The whole massage experience did prove to be very relaxing, even if I was nauseous again 30 minutes later!

So don't stop asking the "how are you doing?" question... I like the attention/support/concern. But just don't expect an answer. The days of "great, staying strong" are probably over. I had used the movie Life Is Beautiful as a source of inspiration through this journey. I liked how the protagonist took an awful situation (a child in a WW II concentration camp) and turned it into a make believe game so that the situation no longer seems as scary. Well, that may have worked in that movie or for that situation, but I think it's use in my journey is starting to fade. Reality is setting in... physically, emotionally, and mentally. And I'm better off dealing with it all head on than pretending that Life Is STILL Beautiful at this stage of the journey.

Liquid and Distractions

So it's been a bit of time since I posted. I've been either a) tired or b) traveling (which makes me more... tired). Honestly, the fatigue is slowly getting worse and worse, yet at the same time I feel almost normal at other moments. Higher highs, lower lows.

I was able to get home to Massachusetts for Easter to see my family (distraction #1 of this post's theme). However, the flooding in Rhode Island (liquid #1 of this post's theme) overtook the Amtrak train tracks and forced the cancellation of service. This left me all packed with no way to get there! Fortunately, my father re-booked me on a train to New Haven, and then drove 2 hours from Mansfield to pick me up there. We were sure that by Sunday evening, service would be restored. OF COURSE NOT! So we made the same 2 hour car ride back to New Haven so that I could catch the train home. I'm so incredibly grateful to my parents for all their support... not just for driving me long distances, but traveling those same distances themselves every two weeks to take care of me after each treatment. I honestly don't know what I'd do without them, or how I can ever repay them!

Their care for me after each treatment brings me to liquid #2 of this post... Oh, there was vomiting... AGAIN. I took the benadryl and the usual nausea medicine, which the doctor assured me would stop the shaking and vomiting that I had with treatment #5. The shaking didn't happen... and I was certainly very sleepy. But, oh, the vomiting! Every 30 minutes from 130PM to 600PM. As the afternoon went on, I did stretch it to every 45 minutes or so. After a while, I just gave up on counting the number of times. Fortunately, I was so sleepy from the benadryl, that after each session, I'd clean up, and immediately lay back down and fall asleep (distraction #2, albeit medically induced). I'd awake 30-45 minutes later with about 5 seconds to realize "oh, here we go again!". I would yell out "help" and my parents would come running in to hold the trash can, rub my back, hand me tissues, and replace the plastic bag lining when I was finished. I just gave into it this time, and didn't worry that it was happening. I got through each "attack" soon enough, and was back sleeping again. And eventually it all stopped. I kind of feel that somehow that's what this whole cancer process is like. Rough patches, sleeping in between, and eventually it'll be over.

And so, all this left me dehydrated and undernourished again. Unlike last time where this caused me to panic, I simply committed myself to drinking and eating at a steady pace, as much as I could handle without getting sick again. The line was drawn at scrambled eggs... but I managed to get down some toast and crackers before then. In order to properly rehydrate, I set my alarm for every two hours (12am, 2am, 4am, 6am, and 8am) and got up to drink something (liquid #3 of this post). By the time Saturday morning came, I was significantly more hydrated and energized than last time.

I also discovered that distractions can REALLY boost my energy. Heather, my best friend from Fairfield, and her fiancee Darrell, stopped by on Saturday evening en route from their home in DC to CT (clearly, distraction #3). I paced my naps so that I would be energized for 330, the time she was set to arrive. Of course, she didn't get here until 530. By then, I was REALLY fading. However, something about seeing her suddenly gave me a new boost of spirit. My parents commented that they'd never seen me so energized after a treatment! They stayed for about 3 hours, and I was like a different person the entire time! Of course, about an hour after they left, I came crashing back down. But they certainly helped to boost my spirits and made the weekend much more enjoyable!

To curb the vomiting for treatment #7, my doctor has advised me to take the same anti nausea medicine an hour before the treatment (even though for earlier treatments I took it at the time of injection and had no problem with vomiting). I'll ask for the benadryl again, so that even if I do vomit, I'll be out of it enough to just get it over with and pass out again! I also didn't have shakes this time, so maybe the benadryl did really help! But no matter what, I've proven to myself that I can endure harsh reactions to the treatments, and that each symptom will eventually pass. I need to continue to mediate on that, keep my eyes on the prize, and just keep going.

In his memoir about his own battle with non-Hodgkins Lymphoma, comedian Robert Schimmel shares a story about his father marching as a Jewish prisoner of the Nazi's during the Holocaust. He says that the prisoner marching in front of his father fell down and refused to keep going. The Nazi soldiers shot him and then told the rest of the group "If you want to live, keep moving". I've been thinking a lot about that lately.

Adapting

A lot of the past week and a half for me has been adapting. On the one hand, I'm trying to adapt my expectations of symptoms after the treatment so that if something goes different again, I won't freak out/breakdown. On the opposite end, I've been trying to adapt my mind away from seeing myself as "Ryan The Cancer Patient" and finding more function as a normal individual within society.

I've been working pretty hard on the "it's not a failure if you vomit" mentality, and think I've made some really good progress. I'm just a stubborn person... and if I don't want to vomit, I don't want to vomit. But I won't lie... I'm a bit jittery about this next treatment. I haven't really planned out a lot of the things I normally would (foods, etc.) or done some of the mental prep work (ie. setting expectations and looking ahead). The lack of effort kind of freaks me out. I think I need to find the line between prepared and structured.

My doctor seems to think I had an allergic reaction caused by a protein build up from one of the chemo drugs... which caused the uncontrollable shaking and vomiting last time. So I'm getting some benadryl before the next treatment. He warned it would make me drowsy... and I'm REALLY looking forward to that!!!

On the adapting to life as a person moving past the cancer, I'm stepping out of my comfort zone a little bit in different places. I got my head shaved on Saturday, and the thinning is really noticeable (see first time I shaved left, versus now on right... there's much less shadow and hair density)

My hair looked really thin and splotchy before I shaved my head (my boss called it baby duck hair). But the bald look evens things out. All my life I've wished for thinner hair... and now with my head shaved, I actually look like a person with a normal density of hair who shaved their head! And I kind of like it! So I didn't even put the bandanna back on after the shave. Add a pair of glasses, and I've invented the new Ryan look... I call it "The Stanley Tucci". I haven't worn a hat or bandanna since Saturday. It's really empowering!!! (Though my head does get cold when I walk to the subway!)

The confidence is also extending into social situations. I was at my boss' baby shower on Saturday, and I felt/looked amazing. Though I could have dropped the cancer into any of the conversations I was having, I chose not to. There was something about floating around the room and socializing with everyone as a normal person that felt... well... different, but in a good way. Though the socializing may not have been the wisest decision from a germ point of view... it felt good from a mental point of view. And after the mental breakdown of last week, don't I deserve that boost! I'm even going to my first meeting with a hotel tomorrow since I got sick. When my boss asked me if I was sure I wanted to go, I said "I feel good. I look good. I like the people we're meeting with. Why not!?"

Yes, I know that Friday will come and knock me off my high horse and I'll be miserable again. But I think as long as I keep climbing higher on these "good days", it reminds me of what I'm holding on for. Then again, I hope it's not just a case of higher highs and lower lows. I guess we'll see!

Meltdown (# 1 of ???)

So it happened... I hit the wall. I thought I had this whole cancer treatment thing "figured out". I knew what to expect to feel each day, what foods to eat at which stage of recovery, etc. I had an "itinerary" of how to get through not only each treatment, but the entire experience as a whole. I could do this. I knew exactly how to get to the light at the end of the tunnel.

And then all it took was one treatment that wasn't like the rest of them.

Unfortunately, my anti-nausea medicine didn't work this time (or, something else went wrong... but that'll take further investigations with my doctor). I'm used to nausea, but have managed to not vomit. This is a good thing, as I'm supposed to stay very well hydrated, and vomiting obviously dehydrates you. But, just like on Seinfeld, no matter how hard one tries to hold back, sometimes the streak just has to end.

About 3 hours after my treatment, my body was shaking uncontrollably. I had a chill that I just couldn't escape. I was wearing multiple layers, covered by numerous blankets, and had the heat on in my bedroom... and still I was freezing. After about an hour, the vomiting began... and continued, several more times. Finally after about 2 hours total, the shaking passed, and I managed to keep down some ginger ale shortly thereafter. I attempted to rehydrate, but obviously was still queasy and slow to recovery. I couldn't eat the foods I normally would, nor as much as I normally would. And thus, my whole recovery plan was thrown out the window.

I think in addition to having my "plan" fail (which always frustrates me in any situation), I have a shame/mental block about vomiting. Mostly anyone who knew me as a child remembers I had tremendous anxiety, which almost always led to puking at life's big (and thus, inopportune) moments. The old plastic coin bucket from Atlantic City that was under the car seat... yea, that was my bucket. But somehow, magically, around age 10 or 11, it all stopped. Since then, I VERY VERY rarely vomit. It's almost become a matter of pride. A "see how far I've come" award that I can display to others, and that reminds me of how much I've grown. Even with all the drinking I've been known to do, it's still extremely rare that I puke. I may be nausea like crazy, but I don't let myself puke... and it passes.

And so, this treatment (which I thus mentally categorized as a failure) threw me. Though it was a weaker/slower physical recovery, I did eventually get my strength back and by Monday was feeling pretty much on pace. But I was still emotionally messed up... and all it took was a commercial for the Cancer Treatment Centers of America that was on during The View for me to lose it completely. While Whoopi and Barbara continued to talk about "Hot Topics", I became a hot mess. I cried from 1130 am to 530 pm... straight! I did take a 1 hour lunch break from crying (during which I also watched an episode of Modern Family). But at 230, I curled up in bed with a book that my Aunt Anne had sent me, and it was back to crying again.

I needed it. (As crazy at that might sound) I needed to just let it all out. I needed to gain a new perspective... to write a new "plan" that was a bit more flexible. I needed to find and list the fears I had and come up with constructive ways to face them... which, in all honesty, is exactly what my Dad used to tell anxious six year old puker Ryan.

I'm a firm believer that sometimes you do need to completely meltdown into a pile of wax in order to sculpt yourself back into what you need to be moving forward.

(As an FYI, I have not cried today... I'm much better, with a new outlook, and once again feel that I know how to get to the finish line of all this)

Another point worth sharing from my meltdown came with clarifying the "Why me" aspect of all this. In his book, Cancer on Five Dollars a Day, comedian Robert Schimmel (who had non-hodgkins lymphoma... but close enough) talks about his realization that cancer is just bad luck... and he's been the fool of bad luck all his life. Yet, he ultimately acknowledges that his life is fantastic despite all that bad luck, and he wants to go on living.

As I reflected on that, I took it a step further. I realized that I can't question "why cancer" or any of the other bad luck that's occurred to me without simultaneously questioning any of the good luck too. To ask "why did I get cancer?", I would also have to ask "why do I have such a loving family?" or "why have I traveled so extensively?" To question or challenge good luck (blessings) in the same way we do bad luck just seems absurd. And so, I'll just have to resign myself to having such a wonderful family, seeing so much of the world, and yes, cancer... which is only for now. It hardly seems like such a tough break in that context.