Thanks to everyone who commented on the first book excerpt I posted a few weeks ago. I thought you might enjoy another sneak peek excerpt of my forthcoming book, Four Seasons for Charlotte: A Parent's Year With Pediatric Cancer. The book will be available on May 15th but you can pre-order now! If you will be in the Ashland, VA area on May 17th, you are welcome to attend the Book Release Party at Gallery Flux in Ashland from 6-9 PM. This excerpt is from Chapter 4: Course of Treatment. I also like to refer to this as the "Cancer is a Hurricane" excerpt.
Charlotte turned
four on July 9, 2009. Her birthdays had always been cause for celebration, but
this year was a bonus beyond measure. Her party was at Romp n’ Roll. We sent
out an open invitation to everyone in
our support circle: Bring no presents. Just show up, wear Charlotte’s
favorite colors (pink and/or purple), and help us celebrate. We had not just
one but three birthday cakes donated
for the occasion. It was a fun time and
a great opportunity to celebrate with our supportive friends and family.
Roger and I
didn’t talk about it with other people, but we gave each other knowing looks
all week. This could be her last birthday. I didn’t want to think about it. I
didn’t want to say it out loud. I kept trying to push the thought from my head.
I said things to myself like, “That isn’t
very optimistic. You have to think positively.” The self-talk didn’t work.
Those thoughts were there. I knew Roger was thinking them too, but we plugged
ahead: one foot in front of the other.
Right after her
fourth birthday, we headed back to Texas.
As luck would have it, friends
in Virginia made contact with friends and family in Houston. These contacts
helped us secure housing, intermittent access to a car, and other
assistance. After our first weekend
there, we were admitted to the Ronald McDonald House and were able to stay
there for only $25 a day while Charlotte received medical treatments. The house was only two blocks from the main
hospital and shuttles could take us just about anywhere we needed to go,
including the proton radiation center or the grocery store. We lived in a room the size of a standard
hotel room with two queen size beds, a small table, a dresser, and a
bathroom. We had access to a kitchen,
laundry facilities, a communal TV room, and a large play area for the
kids. It wasn’t home, but it would do
for a few weeks.
We faced a new
series of tests in preparation for radiation, including another MRI. Dr.
Wolff’s report on that MRI stated: "The images from May 29th [taken after Charlotte’s third brain
surgery] and July 14th [after arriving at MD Anderson]
were compared and reviewed... Some of the tumor lesions which had been left
behind after the surgery became smaller during that time but there were new
contrast enhancing lesions and leptomeningeal disease which appears to be new.
This has to be judged as a mixed response-progression."
In lay-person terms, that means that while it looked like some of the
tumor left over from surgery actually got smaller, there were new tumors or
lesions forming and the cancer had most definitely spread to the spinal
fluid. The doctors were still confident that the proton radiation would
help shrink the current tumors; however, Dr. Wolff realistically did not
believe that radiation alone would be enough to fight her cancer. We were
looking at a cancer that grew very quickly, very aggressively, and it was
starting to spread into her spine. At this point, new drugs were added to the
possible equation and we pushed forward with a mix of chemotherapy and
radiation during our time in Texas.
It was right around this time that the concept of cancer as a hurricane seeped into my brain. Like cancer, a hurricane comes on strong and
weaves a path of destruction. You can prepare for the battle. You can batten
down the hatches. You can even move away from areas more likely to be hit by
hurricanes (like Florida) to somewhere like, oh, Kansas. But then, of course,
you have to worry about tornadoes and dust storms. Heck, they've even had
hurricanes in Canada and England. If there’s a place in the world that’s not subject
to natural disasters, I’ve yet to find it.
With some hurricanes, you have a lot of warning. You can see it coming
and have plenty of time to try to minimize the effects by boarding up the
windows, trimming the trees, or evacuating altogether. With other hurricanes,
the storm seems to develop so suddenly, you barely have time to grab your
raincoat and duck for cover. Some people choose to live in the danger zone. You
can live in the tropics for years and never experience a serious hurricane.
Others seem to have storms that follow their every move.
Some hurricanes are small: category one or even tropical storms. They’re still dangerous and a real pain in
the ass. These storms cause significant localized damage; a tree down here or there, the power goes out
for a little while, school is often closed. There is preparation and clean up
and all of the standard procedures. But they are far less to fear than the
Category Five. Those powerful storms are definitely going to cause some serious
destruction. Those are the ones you want to avoid. The power will be out
for days or weeks at a time. Your home may be destroyed or severely
damaged. You could lose everything, including your life. Because of the
variable nature of these storms, sometimes when a hurricane strikes, you're
still not sure (until it's passed) what category it was when it hit. It doesn't
really matter. When you're in the middle of the hurricane, it's scary whether
the wind is blowing at 70 or 150 mph.
And in the middle of that hurricane is an eye. The eye is
deceptive. In the eye, there is no wind. No rain. No tornadoes. Everything is
calm and clear. You may even hear the birds chirping. In the days before
satellites and radar, people would step out of their homes during the eye of
the hurricane only to be taken by surprise by the rest of the oncoming
storm.
Eventually, the eye passes. Not only are you left with the rest of the
storm, but sometimes the most severe, most damaging, most dangerous part of the
storm is the part that follows the eye. Ironically, the most dangerous storms
usually have the largest, most clearly defined eye wall.
By mid-July, we were in the eye of our own hurricane. This storm had
been brewing and raging in our little family for six months. We didn't have a
lot of warning, but we called out the National Guard (our incredible support system and our medical team) and they
were doing the best that they could. So were we. We had been braving this storm
and doing everything we could to fight it. Some days we did better than others.
Right before Charlotte’s third surgery, things had been calm. We
had a direction. We had a task. We hadn’t spent the night in a hospital in
almost three weeks (hooray). We hadn’t had to visit the doctor's office or
therapy appointments in over a week (hooray). We had actually resumed a
schedule that most closely resembled our old "normal" schedule, doing
things that we hadn’t done in almost four months. Charlotte was happy and
eating and growing and smiling and making us smile.
And yet that storm was looming on the horizon. The other side of
the eye wall was getting ready to hit us and I was not sure how long the
remaining storm was going to last. I was fearful of the damage that would be
caused. I was fearful of the unknown. I couldn’t stop thinking that the process
would start all over again after her surgery. There would be risk. There
would be trauma. It just came with the territory. And then there would be
the long clean up. We would need to assess the damage, look towards rehab, get
a new direction for cancer treatment... and the long process would begin
again.
It was so difficult to look at my precious little girl and realize
that while she laughed and tickled you, sang nursery rhymes, read books to
herself, and talked about going to "Houston, Texas" in her adorable
Southern drawl that there was this ugly, dangerous, cancerous tumor growing
inside of her brain. That insidious thing that refused to be stopped by
the traditional avenues was testing both modern science and my ability to
remain optimistic.
I struggled to breathe while I sat still in the eye of the big
hurricane, anticipating the storm clouds that were building again.