Hop for Hope

You need only to read a page of this blog to hear me gushing about my family and friends.  And here’s a new reason: the incredible people at my workplace are organizing a benefit for me.  The money raised will help me pay medical bills and essential expenses (ex. mortgage) while I’m living on a reduced income.

They are putting a ton of effort into the organization of the event, including a website and custom wristbands.  The website is http://hopforhope.net.  If you want to come to the event (in the Philadelphia area), you can buy tickets online.  If you own a business and would like to donate your item or service to the silent auction, please contact me by leaving a reply to this post.

The fundraiser is helping me a lot – both financially and emotionally.  It’s an unbelievable feeling to know how many people are here to support me while I go through this process.  The website launched 2 days ago, and I’ve already received a few donations.  It was SO NICE to open the mail today and know I could pay the bill!

I’m really looking forward to the event, and each day I watch the guest list develop from tickets sold.  It’s going to be a melting pot of my friends from current and past lives.  I will be surrounded by people who care for me, and it will be an awesome party!

Stubborn

My oncologist called this afternoon.  I thought, “uh oh.  It’s bad, and he wants to see me right away.”  So imagine my surprise when he said, “the scan looked better than the first one.  You’re improving.”  This is wonderful news.  I meet with him on Monday, but I expect the instruction will be to remain on the Xalkori, continue to taper off the predinose, and maybe add a mini-cocktail of other things to manage some of my newer side effects.  Xalkori won’t cure my cancer, but this means that it IS shrinking it.  This should continue until I develop a resistance.  That could be this year or next.  But whatever it is, I’ll take it!

And now some sadder news.  I just learned that my uncle’s wife passed away.  From lung cancer.  She had a cough for quite some time.  She went to her doctor who insisted it was allergies.  (Sound familiar?)  And she trusted him.  The cough continued, and she became very ill.  She was hospitalized for dehydration, and they quickly discovered the cancer.  After one round of chemotherapy, her white blood cell count was near zero, and she opted to discontinue treatment.  She passed away one week later.

I can’t stress this enough.  Take what your doctor says with a bit of skepticism – even if he is your best friend.  The best doctor doesn’t know everything.

I know not everyone is as stubborn as me.  But when it comes to your health, you must be.  Stop ignoring that ache in your leg.  Get that 4 week old cough checked out.  Have your doctor look at that discoloration on your arm.  Ask for an x-ray.  Push until you have an answer.  If something doesn’t feel right, it’s probably not.

I hope everyone has a nice weekend.  Take care of the ones you love.

Start Your Engines!

I have a lot going on today.  I have a PET scan in the morning, physical therapy in the afternoon, and the Gatorade Duels at night.

Ah, the PET scan – a quarterly joy for every cancer patient.  Here’s how it works:

1. Fast for 4 hours.
2. Show up to the radiology department in comfy clothes.
3. A nurse takes me to an empty room.  She takes some information and pricks my finger for a glucose test.  (If your sugar is too high, they cannot perform the test.)
4. Now the fun part!  The nurse places an IV and retrieves a funny looking cylinder from (what I assume is) a secret vault.  It contains one dose of radioactive glucose.  From memory, the steel cylinder is approximately 4″ long and 2″ in diameter.  She injects me with the magic potion.
5. Then I sit with my legs propped up for an hour.  The radioactive goo rides around in my body and attaches to the cancer cells.  Evidently cancer loves sugar.
6. Scan scan scan.  The actual scan takes about 40 minutes.  I lie on a thin platform (similar to an MRI or CT but thinner) and they wrap me with a large Velcro band to keep my arms still at my sides.

The result is a color 3D image of my body.  As I understand, the thousands of images are compiled so a doctor can view the body in layers.  (This page contains some example PET images and videos.)  I meet with my oncologist to discuss the results on Monday.

I have physical therapy in the afternoon.  It’s pretty routine.  The therapists are very nice, the exercises are brainless, and I usually run out of air long before my muscles tire.

In the evening I will be parked in front of a TV to watch one of the first big events of the NASCAR season: the Gatorade Duels.

I never thought I would be a NASCAR fan.  Never-ever-ever.  I thought it was just a bunch of rednecks driving in circles.  And then I met Seth.  He is a NASCAR fan, so I thought, ‘what the hell, I’ll keep an open mind.’  By the end of the season, I had selected ‘my driver’ and was hooked.  Last season ended with my mom’s favorite driver and mine in a photo finish for the championship!  Alas, her guy won, and I may still owe her a back rub.

This is the first weekend of the season.  The qualifying races are on Thursday, the trucks race on Friday, one class of cars is on Saturday, and the famous Daytona 500 is on Sunday.  I predict a lot of wrecks and a great photo finish!

So that’s my Thursday.  The plan for Friday?  SLEEP!

Dropping the Bomb

It’s always sobering to meet people who have just learnt of my cancer.

It sometimes comes up in conversation, but more often Seth or I raise the topic to put things in context. For example, we were meeting with someone who had a cold, and I jokingly said “stay back!” Or if I’m in a conversation and need to pause to catch my breath, I will probably explain why.

I’ve become accustomed to the ‘jaw drop’ when someone hears my news. I’m okay with that part. It’s the questions that come next that are uncomfortable. Without fail, the first question is “Are you still in treatment?” That one’s easy: “yes.”

Next I will either get more questions about the type of treatment, or they go straight for the jugular: “Well, I’m sure you’ll beat it (and/or) be okay!” People are genuine in that they want me to be healthy. But the statement also serves a basic human need to resolve conflict. We want things to be okay – not just for the subject – but because that will make things right in our minds. No one wants to live in a world where a healthy, 30-year-old person can get lung cancer. It’s contradictory to what we thought possible, thus it creates a rift. And the brain wants to – needs to – fix that.

At this point, I could just smile and say, “thanks.” But I wasn’t a person to pull punches before, and my diagnosis surely hasn’t changed that! No, if I already chose to share my condition, I’m going to provide full disclosure. Usually I’ll say something like “Actually, I’m stage 4.”

I have yet to meet someone who didn’t understand the gravity of those four words. And that’s when it happens, that moment that is so sobering. Their eyes widen and brow furrows as they realize they are looking at someone almost certain to die before them. Some people scan me, almost like they’re looking for a countdown timer.

In that split second, I’m reminded, “wow, I am really screwed.” For some reason the gravity of my situation always hits me in those exact words. I guess even in my internal dialogue I’m as straightforward as can be!

The conversation continues with an awkward “I’m so sorry,” followed by my brief tap dance about how wonderful technology is and how I may have several quality years. Then I change the subject as quickly as possible. I’ve explained my behavior, dropped the bomb, collected some pity, and concluded by giving the other person an ‘out’ so they can still believe the world is all rainbows and ponies. (For the record, I’m a fan of both.)

I guess I could keep it a secret. It’s no one’s business that I have cancer. But sharing with people can be cathartic, and I consider their momentary uneasiness a small price for that. Maybe you feel that’s selfish, but I don’t.

Double Take

Today I decided that I want to meet with another oncologist.

When I began this journey (yesterday marked three months since diagnosis), I met with a great surgeon at the University of Pennsylvania.  The purpose of that meeting was to a) get his opinion on my case and b) see if I liked him in case I needed a more invasive biopsy.

At that time, the path was very clear.  My cancer tested positive for a rare genetic mutation, and the FDA had just approved a non-chemo drug for it.  Xalkori held the most promise with mild side effects.

After one month on Xalkori and a whole lot of prednisone, my chest x-ray showed a 15% improvement.  The second month showed “slight” improvement.  During the Xalkori trial (Study A), 79% of responses were achieved during the first 8 weeks of treatment.  This data supports the possibility that I’ve seen all the benefit I will get from Xalkori.

In an article published just last week, Massachusetts General Hospital Cancer Center doctors discuss the various ways patients acquire resistance to crizotinib (Xalkori).  One of my peers, known on the Inspire.com forum as ‘Craig in PA’ summarized it well:

This resistance is “an example of how amazingly adaptable the human body is. You can inhibit or break a gene and your body will try to compensate; you inhibit something more, and it tries to compensate again.”

My next PET scan is scheduled for February 23.  This will show how the cancer has changed and also look for any metastases.  We expect to see the 15% shrinkage and no spread to any other organ.  I will get the results when I meet with my oncologist the following Monday.

I expect my doctor will give me his recommendation on whether I continue with the Xalkori for a few more months or pursue chemotherapy.  Either way, I’m going to seek a consultation with another oncologist.

I like “consultation” instead of “second opinion.”  ‘Second opinion’ sounds as if the first was incorrect.  And of course, that’s (usually) not the case.  I really like and trust my doctor.  But I can’t expect any doctor to know everything.

So where do I go?  I’m fortunate to live in a suburb of Philadelphia, home to some of the best cancer programs in the country.  I think I’ll take a two-phased approach.  First, I’m going to call the Penn surgeon I saw in November and ask him for a recommendation.  Second, I’m going to try to get in touch with one of the doctors at Mass General.  They are well-versed on ALK+ patients since they are one of the crizotinib trial sites.  I’m not sure if those doctors are accepting non-trial patients, but it certainly won’t hurt to ask.  It wouldn’t be convenient, but I could take the train to Boston when necessary.

No matter whose treatment plan I follow, I hope to continue to be monitored by my current oncologist. When I was first diagnosed, the nurse assured me that they would work with any other group to get me the care I need.

So that’s my plan.  I have a strong sense that I’m approaching crossroads, and I don’t want to make a poor decision.  If the next course of action is chemotherapy, what is the cost/benefit analysis?  Are the odds of cancer shrinkage worth the anticipated side effects?  Or… maybe I should be satisfied with the control I have with Xalkori.  After all, the cancer improved a little in month 1 and certainly hasn’t worsened since then.

I hope to have answers to these questions and more by the end of February.  Stay tuned…

Bunspace

One of the most surprising things I have experienced since my diagnosis is the outpouring of support from pure strangers.  One community, Bunspace, has been particularly supportive.

Bunspace was created so rabbit owners may find information, share experiences, and socialize with like-minded people.  Since its inception in 2007, Bunspace has grown to include sections for veterinarian referrals and adoptions from shelters and rescue organizations.

I joined Bunspace and created Blossom’s profile in 2008.  It’s similar to other social networking sites: she has other bunnies as buddies, virtual carrots (similar to Facebook “Likes”), and a place to show off photos and videos.  There are dozens of forums and groups for discussions which range from traditional topics (rabbit behavior, care, etc.) to things that have nothing to do with bunnies (politics, film, travel, etc.).

Shortly after my diagnosis, I broke the news on Bunspace by updating Blossom’s ‘status’ message.  The outpouring of support was incredible.  Many people shared their kind words via online messaging.  Get Well cards were mailed from countries around the world.  One woman made me a necklace with a charm that said “hope.”  These people, essentially strangers, wanted me to know how much they cared.  It meant a lot to me, so in turn, I try to ‘pay it forward’ when I see someone (or somebun) else in need.

It is clear that while owning a rabbit brings people to the site, the sense of understanding and openness amongst like-minded, warm-hearted individuals is what drives participation.  Best Friends Animal Society states their vision as “a better world through kindness to animals.”  Bunspace and its members are a great example of how passionate people work to achieve this every day.

Day Drifter

I’ve been away from work for quite some time (about 3 months), and some of my friends have asked how I spend my time.  I always say, ‘it depends on how I feel.’  And although this is true, I realize it is hard for others to understand how one day I can feel pretty decent and the next I feel horrible.  So… Let’s say I have 4 types of days: A, B, C, and D.

• An “A” day is my least symptomatic.  On these days, I can spend some time watching TV or browsing the internet and actually forget there is anything wrong with me!  I can do some ‘normal’ things, like shopping, in small stints.  I had a lot of these days in December when I was on 60 mg of prednisone.  Unfortunately, since my back shenanigans began, I have had zero “A” days.
• A “B” day is a good day.  Breathing takes some effort, but I’m generally in good spirits about the whole thing.  I can ride in the car comfortably, and I can shop with the help of the motor scooters available in larger stores.
• A “C” day is not fun.  On these days I feel under the weather, and it seems like my body is rubbing my face in the fact that I have cancer.  I can leave the house if I push myself, but I’d rather not.  Breathing is work, and sometimes I need to manage related side effects with additional medication.
• A “D” day really sucks.  I won’t leave the house, and I will rarely leave the couch/bed.  The worst part of these days is that I can’t get comfortable.  I feel like I have the flu, it’s takes a lot of effort to breathe, and I’m just plain miserable.

Of course it’s rarely this cut and dry.  Sometimes I might have an awful morning but feel better in the evening.

While I wean off the prednisone and deal with back pain, my distribution of days has been roughly:

• A: 0%
• B: 50%
• C: 30%
• D: 20%

With that understanding, I can answer the original questions: Am I bored?  Do I get cabin fever?  The short answer is ‘not often.’  Boredom is something that happens when you feel good enough to do more, and you aren’t doing it.  In my case, I’m usually not doing more because I don’t feel good enough.  There have been a few days where I have had the “I need to get out of this house” jitters, but it doesn’t happen often.  Here are some of the things that keep me busy:

• Doctor and physical therapy appointments
• Calls to insurance and disability companies, organizing and understanding medical bills
• Lung cancer research and forum participation
• Napping, social networking, watching TV, blogging, loving on the bunny

The distribution of these activities largely depends on how I feel.  When I’m having a better day, I also enjoy an occasional lunch with a friend or a trip to Home Depot.

It is frustrating that I don’t feel good enough to be more productive.  But right now my job is to rest and let my body try to fight this thing.  If cancer has a silver lining, it is the ability to nap at will! 

Where I Stand

As a teenager I read many Dean Koontz novels. Several of them included brief poems between parts or chapters. And one of these poems has stayed with me all my life. It’s almost haunting, really, how it will invade my mind – even if I haven’t thought of it in months or years.

On the road that I have taken,
one day, walking, I awaken,
amazed to see where I have come,
where I’m going, where I’m from.

This is not the path I thought.
This is not the place I sought.
This is not the dream I bought,
just a fever of fate I’ve caught.

I’ll change highways in a while,
at the crossroads, one more mile.
My path is lit by my own fire.
I’m going only where I desire.

On the road that I have taken,
one day, walking, I awaken.
One day, walking, I awaken,
on the road that I have taken.

Maybe you can see yourself reciting this poem at one point in your life. Or maybe, like me, you identify with it today.

I can’t say that life didn’t happened as I planned; I realized planning was futile when I was just a teenager.  That was when I first had an inkling that ‘everyone’ doesn’t necessarily ‘have it right.’ I started to culture and nourish an ability – maybe even a gift – to create solutions and not just make decisions.

Looking back, this skill has served me well. Like a stand of trees it has grown and matured alongside me. It helps me overcome odds that seem insurmountable.  It guards me from being someone I’m not.  It shelters me from crushing self-doubt.  It lets everyone else know where I stand.

When I turned 30, I told myself the next 30 years were going to be the easy ones. After all, between 13 and 30, I had faced enough challenges for 2 lifetimes. Yep, I expected the next 30 years would be full of fun, relaxation, and fulfillment.

And why would I think otherwise? I worked hard. I endured. I did everything I could to setup the best possible lives for the ones I love and for myself.

But alas, shit happens. Rather, rare lung cancer happens. One moment I’m trying to convince a doctor that my cough isn’t an allergy. And a few days later I’m sitting in a hospital bed, weeping, asking a pulmonologist to spell the variety of cancer growing inside me.

This is not the path I thought.
This is not the place I sought.
This is not the dream I bought,
just a fever of fate I’ve caught.

I know only to deal with this as I have dealt with all other problems in life: head first and with a solid plan.  Of course, that would be meaningless without the love and support of my family and friends.

This December I was sitting in the barn with my mom as she worked, and a thought came to mind.  “You know,” I said, “I would rather have lung cancer and people who love me so much than be healthy without them.”

I guess that tells you where I stand.

Wasted Time

One indicator that I’m having some rough days is my lack of blogging.  And this week has been challenging, both physically and mentally.  I haven’t had much interest in watching TV or eating, for example.  Don’t worry, I am eating, just mostly for social reasons (dinner with Seth) or necessity (so I can take medicine).  And to tie back to an earlier post, I’m fine missing a few meals!  The part that troubles me is that I’m not enjoying these things.

To be honest, I’m rather fed-up with this whole cancer thing.  Even sleeping has lost its charm.  Sometimes I feel like I’m just passing time in my signature low-grade-fever-funk, waiting for the moment when I’m so exhausted that I pass out lying down on or leaning in the corner of my couch.  When I wake 2-4 hours later, it’s usually in a panic, gasping for air, coughing.  It’s getting old my friends, really old.

So tonight I tried to push myself a bit and go to dinner, even though I didn’t feel good.

Normally, when you are sick you think, ‘I should rest so my body can heal, and I will feel better.’  But I’m not sure that logic applies here.  First, I know that no amount of rest will fix this.  Cancer does not simply ‘run its course.’  Correction: Cancer DOES run its course, but you don’t want to be around at the finish line!  Second, misery loves company.  I think my exact words to Seth as I stepped into his house were, “I’m tired of being miserable alone.”  And third, I hate feeling like a day has gone by and I’ve done absolutely nothing to enjoy it.

So dinner was nice.  I took my time, and I enjoyed both the food and the company.  And I enjoyed being off my couch for a couple of hours.  I can’t just keep waiting to feel better.  What if this is as good as it gets, and I’m just wasting time?