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.