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!

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.

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 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.

• 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! 

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.

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?

Blossom rides first class in the shopping cart.

Something warmed my heart yesterday.

Since we moved into our home a year and a half ago, Blossom’s activity level has increased.  She was too skinny at her last check-up, so I’ve been trying to put weight on her.  I last weighed her at PetSmart when we visited Santa in December. (This store has a veterinary office inside.)  I think she’s gained a little, so it was time for a weigh-in.

Seth parked the truck, grabbed a shopping cart, and placed Blossom – soft carrier and all – inside the cart. Once we were safely inside the vestibule, I unzipped the top panel of the bag so Blossom could peek out if she wished.

As we proceeded into the store, Blossom popped her head out of the bag and immediately drew a crowd, as she tends to do.  All the attention, though, was not appreciated!  She leapt from her bag, found footing on the collapsed child seat of the cart, and flung herself over the handle and into my arms!  If she could talk, she would have said, “Mommy, protect me!”

Fortunately I’ve caught this leaping bunny before.

It seems that whenever Blossom is scared, she wants me to hold her.  Before Sunday, this only happened at the vet’s office where I can never get more than an arm’s length away from the exam table; given the chance, Blossom will leap out to me through thin air.  If I’m standing right at the side of the table, she will put one paw on each of my shoulders and climb into my arms.

It’s always shocking when a 16+ pound bunny throws herself at you.  But it’s also incredibly heartwarming. And yesterday it made me feel really good about myself.  Like I must be a good person to deserve such trust from this precious, innocent creature.  She made me feel… loved.

The orthopedist confirmed that my back is ‘structurally sound.’  This is really good news because I don’t need any other issues!  The theory is that my muscles may be extra-susceptible to atrophy as a side effect of the Xalkori.  And since I can’t walk very far (breathing), I’m not maintaining them either.

That said, it surely feels like a serious problem when I can’t stand or walk for very long.  And it irritates me when I or others say, “it’s only muscular.”  Oh well…

The doctor wrote a script for physical therapy, and my appointment for evaluation is on Tuesday.  It should be interesting.  How do you exercise someone who can’t breathe enough to exercise?  I’m hoping for massage therapy.  Stay tuned!

When I was young I was very active.  My brother and I were outside goofing around all the time.  In grade school, I began twirling baton in the individual competitive circuit, and I was really good.  I would practice hours each day, so burning calories wasn’t a problem.  Still, I was always cognizant that I wasn’t rail-thin like the other competitors.

Through middle and high school I continued to worry about my weight.  I wasn’t the heaviest girl in my class, not by far, but it certainly felt that way.  Looking back now, I was probably not nearly as disgusting as I thought I was.  In 10th or 11th grade I discovered that a very low calorie diet was the key to losing weight.  Exercise did nothing but make me hungrier.  Starvation was the way to go.

And then on to college.  I gained the “Freshmen 15,” but being around a more diverse group of people made it seem not as bad.  And over the next few years, although I complained regularly, my weight remained relatively stable.

I think I started gaining weight late in 2001.  I had lost my job and hadn’t been immediately successful in finding a new one.  This led to less activity, more depression, and stress eating.  I estimate that I gained 40 pounds over two years.

In August 2003 I experienced a terrible loss.  I was hurting so bad, and I figured nothing could make me feel worse; so I decided to starve myself while I was at it.  I went to one of those ‘medical weight loss’ places.  Basically, you meet with a doctor, they tell you to eat very few calories, and they give you an appetite suppressant (phentermine).  You go back every few weeks and pay them directly for this drug.  (They don’t accept insurance, of course.)  On the shady scale, it’s only a few steps up from selling smack behind the gas station.  I lost 50 pounds in 7 months.

By the time I stopped the appetite suppressant, I had developed low-calorie habits and kept off most of the weight.  And if I needed to keep myself in check, I would jump on the pills for a week or so to help me remember that I don’t need much food.  And things stayed relatively manageable for 3 years or so.  I probably gained 5-10 pounds a year during that time.

In March 2008 I was laid off from my job and once again found myself with a lot of time on my hands.  But this time, instead of eating, I decided to try to lose some of the weight I had accumulated.  Since it worked the time before, I decided to go the same route with the ‘medical weight loss.’  And once again, I was successful.  I didn’t lose as much weight, but I was happy enough.  The key to success here was to sleep as much as possible.  I wasn’t working, and I figured the more time I slept, the less time I could spend eating.  Oh, it sounds funny, but it is absolutely true.  I could sleep through breakfast and lunch and have a small dinner thanks to the appetite suppressant.

And here we are now.  Since that last success I’ve gained at least 60 pounds.  And it might as well be tattooed on my forehead.  In fact, in one of my first meetings with my oncologist, I told him, “if I have to have cancer, I better at least lose weight!”

Of course, that hasn’t worked either.  The prednisone has made me retain water, gain even more weight, and display it in my face and belly for the whole world to see.  It’s so screwed up that I’ve even dropped a pants size while the upper half of me grew.

And with a serious diagnosis, worrying about my weight seems a little silly.  I have bigger fish to fry.  That said, I’m not eating sticks of butter over here!  My most frequent snacks are rice cakes (35 calories each), Fudgsicles (35 calories each), and bananas.  At dinner, I eat whatever I want without considering calories.  Depriving myself of a decent dinner just doesn’t make sense.

But my weight has really started to bother me over the past week.  I ‘blame’ the whole back issue.  It’s really been bringing me down (mentally and physically).  I hope once I can start walking around – even at a snail’s pace with a shopping cart – I will feel better about myself.