Relaying the Relay

Sometimes insomnia pays off!

Relay For Life started on Friday at 7pm with a little chaos for us late registrants, but by the time the opening ceremony got started it was a lot of fun. I heard my name read aloud during the survivor roll call, and was directed through an arch of screaming cheerleaders who presented me with a medallion, and then it was time to line up for the Survivor Lap around the track. My husband and kids joined me for that lap (I was toward the end of the line, where the Caregiver line started for their lap, so we kinda did both). People cheered us on the sidelines, and it almost made all this cancer stuff worth it. :)

By about 8:30 everyone was walking around the track. Relay starts at dusk, representing the time of cancer diagnosis, when things start to get dark and you think your life is ending.

As the night gets colder and darker, it represents the beginning of cancer treatment, when things seem overwhelming and exhausting. As tired and sick as you feel, you mustn't give up. You could still see people taking turns going around the track, and even in the wee hours of the morning people were having dance parties and soccer games to stay awake.

A couple of hours before dawn you're still really tired, but you know you can make it. Dawn represents the end of treatment, when there is a light at the end of the tunnel and a new day full of possibilities (at least after a good nap).

The description in this analogy seemed more dour than my experience. I've been blessed -- my cancer treatments were a breeze compared to the all-night trek! Of course, I'm memory impaired, so that might be why I think that.

We actually cried uncle and headed home around 5 am, when footballs and soccer balls kept flying into our campsite, followed by teenagers who almost trampled our kids who had finally fallen asleep.

Until then, though, it was a lot of fun. This was my dad's first Relay as a fellow survivor (here we are sporting our purple survivor shirts), and this was the third Relay that my son and I participated in together. I ran into a friend who is a long-term cancer survivor, and we did a lap together. At about 2 a.m. my husband and daughter went close to the stage for the dance party, and before long my daughter was pulled onstage and proclaimed the "cutest dancer". Before I could get close enough with my camera she was back down in the audience again, but I got some great footage:



I finally went to sleep at home around 7:30 am and slept for a whole four hours. We spent Saturday afternoon doing some gardening in the backyard, my husband and I spent some time at the temple Saturday evening, and we all had a great night's sleep Saturday night.

All in all, it was a worthwhile experience. Certainly another life-affirming one. I appreciate those who supported Relay For Life and helped me raise money for the American Cancer Society. Much thanks to the Cooper Aerobics Center and our Cooper Cares team! And here's looking forward to Relay #4 next year!

Relay # 3!!!

I can't believe it -- my third Relay For Life event is today! (Well, really tonight. It goes from 7pm to 7am -- because cancer never sleeps!)

Relay For Life is something I thought I was lucky to do once. (Yeah, that picture is me on Relay #1.) And then I thought I was really lucky to do a second one, when my youngest brother invited me to join his Blakinator team in Houston's Relay last year. Now here I am, doing a third Relay tonight in McKinney.

I'm on the Cooper Cares team, and I may stick out (literally) among the Cooper Aerobics Center folks, whose professions are devoted to health and fitness. But that's okay -- it's an awesome group. And I just have to remember when I was a lot heavier and felt self-conscious at the gym. I finally realized -- hey, what could people say? "Get some exercise, Fatty," while I'm on the stairclimber?

(I also used that analogy to help a friend who was single and pregnant and felt self-conscious going to church.)

I'm very grateful to the Cooper folks who are participating this year. Relay For Life is a really great event.

And it's my THIRD!!!

For those who want to support Relay For Life, please visit my Relay homepage at:

http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeHighPlainsDivision?px=4172701&pg=personal&fr_id=6016

Do you hear what I hear?

They say you don't fully appreciate something until it's gone. In my case, something has been gone for two years and I didn't even realize it. That something was my ability to hear.

Today, after a painful labor and delivery process, my ENT was able to finally extract the remaining plug from deep inside my right ear. He showed it to me. It was the size of an earplug, and it was mostly dead skin, mixed with wax and hardened over the last two years in response to the radiation that pummeled the right side of my head during my initial treatment.

When I got in the car to drive home, I noticed that the car was making lots of strange, loud noises. (It was the engine running.) I kept fumbling for the window buttons, because I kept hearing the roar of gusting winds. (It was regular street noise; my windows were closed.) When I got home and pushed the button to close the garage door I was startled by the initial sound, and figured something must be wrong with the motor. (Nah.) As I write this I am astounded by the sound of my fingers clacking on the keyboard. How am I not waking everyone up with this racket?

I talked to my mom on the phone, and she said I wasn't shouting into the phone like I normally do. Conversely, my husband commented that I wasn't whispering when I talked to him, like I normally do when we are in the same room together. Until today I had no idea how loudly or softly I was speaking, because it was all just a mess of vibrations. Now when I talk, I actually hear my voice. It's so weird! It sounds like an echo with some strange person's voice in there. She sounds like she has a cold or something (or maybe she's just getting over the flu).

I realized that whenever we watched a movie at home I always put on the closed captioning. I could always hear the talking, but not well enough to make out the words. It was a subtle thing that I chalked up as bad sound quality, not hearing loss. But now I'm realizing how much my hearing has been impaired all this time, and how much I've been missing, and how good it is to have it restored. One more thing to be thankful for -- ears to hear. Something I thought I had all along, but now I know I have more.

I was so excited, I went out and bought a cd of Mozart music. I've been able to hear (and sing) and thoroughly enjoy music all this time, but now it's a little different and a little better. I can't wait for the next opportunity to sing something.

The joy is tempered somewhat by the fact that my ear is still really super tender. It's allergy season, and this ear can no longer be rubbed when it itches. And when I blew my nose this afternoon, I learned how much pressure that puts on the eardrum, and I also learned that there was, in fact, something even more painful than the procedure in the ENT office this morning. I get to try some sterile anti-inflammatory drops tonight, and I go back in two weeks to see how things are looking. (Or sounding.)

What a strange day! "Surprise -- you've been deaf for two years, and didn't even know it! But you're better now -- how'z that sound?"

And of course, this experience made me (pardon the ear pun) wax philosophical about life. (Everything's a blog topic, it seems -- even nasty ear stuff.) We are so dependent upon the tangible, the tactile, the things we can personally see, hear, touch, or taste. Such dependence makes our reasoning infantile and limited, because we go through life partially blind and deaf, thinking we can see and hear it all, but being completely oblivious to the full range of possibilities.

I recently heard a critic of my faith demand some kind of "proof". I have seen friends struggle with disappointment and grief, not understanding "why" something so unfair and senseless has happened to them. I have listened to people express fears about the future, because they can't see far enough to know what will happen to them. Their universe is restricted to what they can personally perceive and reason in the here and now, and it diminishes their ability to experience a fulness of possibilities.

Suddenly I'm hearing Barbra Streisand in Yentl:

It all began the day I found

That from my window I could only see a piece of sky.

I stepped outside and looked around.

I never dreamed it was so wide, or even half as high...

She goes on, and then later she concludes, "With all there is, why settle for just a piece of sky?"

Why live in fear and doubt and limitation because we rely on our own little piece of sky? No wonder the scriptures teach us to avoid trusting in the arm of flesh. (In my case it was the "ear of flesh!")

"When they are learned they think they are wise, and they hearken not unto the counsel of God, for they set it aside, supposing they know of themselves. Wherefore, their wisdom is foolishness and it profiteth them not." (2 Nephi 9:28)
"For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord..." (Isaiah 55:8)
"Trust in the Lord with all thine heart, and lean not unto thine own understanding..." (Proverbs 3:5)
"Look unto me in every thought; doubt not, fear not..." (Doctrine & Covenants 6:36)
"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." (John 14:27)

Now that I have a better sense of hearing I can appreciate how much I had lost, and how much better things can sound. It was previously beyond my comprehension. Likewise, at times when I have turned parts of my life over to the Lord (whose perception is infinitely more broad than my own) I have come to recognize possibilities and blessings that were previously beyond my comprehension. Those experiences build hope and faith in times that would otherwise be ripe with fear and despair.

Amazing Grace, how sweet the sound...

...and TWENTY-EIGHT!

Those who know me well know that my ultimate favorite movie of all time is Gone With the Wind, but once in a while I swerve into other movie obsessions.

My latest, Amadeus, is a throwback to my college years, when it was fairly new and we had to watch it for music appreciation class at BYU. I loved it back then, and it recently came back into my nostalgia movie lineup. So now when I am staring at the ceiling in the middle of the night I keep reliving Mozart music from the movie. I just tell myself that the music is therapeutic to my brain (hopefully counteracting the deleterious effects of sleep deprivation).

There is a scene in the movie where Mozart is trying to persuade the emperor of Vienna to permit him to proceed with his opera, "The Marriage of Figaro." He describes a unique part of the opera, and asks the emperor to guess how long he can sustain it:

"Guess! Guess, Majesty. Imagine the longest time such a thing could last, then double it!"

Along with the music, that line from the movie keeps resonating in (what's left of) my mind. Because if we take the best-case median survival of a GBM patient at the time I was diagnosed (14 months, based on the Temodar drug study) --then double it -- and add one day -- that's where I am! Twenty-eight months and counting. This experience has been masterfully composed by Someone much better than Mozart.

Twenty-eight months, and all I have to worry about before my next MRI is this nasty flu and a blocked ear and a record streak of insomnia . (Think of how long a person can go without sleep and double that, too, I guess -- you'd think I'd have another book written by now!)

Aww...FLU-eey!

My son tested positive for flu yesterday -- his second one this season, despite flu shots for our whole family. This explains why my sinus infection hasn't cleared up as fast as I'd have liked -- I must have it, too. Luckily my fever is finally on the way down, while his is up. My husband came home from work early yesterday with fever and flu symptoms, too, and our daughter seems to be next in line. There's nothing like a house filled with flu to bring a family together.

We had a moment of excitement in the middle of the night when our son had a bad reaction to the Tamiflu he was prescribed. He came running into our room, screaming and delusional -- and sound asleep. It was freaky. He had several major night terrors, so the Tamiflu went down the drain. He'll have to ride out the flu the old-fashioned way like we do -- homemade chicken soup and lots of rest and fluids.

Speaking of fluids, it's kind of gross but funny -- as I cleaned his vomit off the kitchen floor yesterday I automatically remembered our childless days, when I would fantasize about such an opportunity to care for a sick child of my own. I realized it was a privilege.

It reminded me of an earlier realization that I'm sure I've blogged about before. But I shared it today with my son as we were both feeling miserable. I explained that we were born into this world to receive a body, and although we knew it was one that would get sick and hurt and eventually die, we shouted for joy at the idea (Job 38:7). The evil spirits who were willing to enter into swine (Mark 5:3) are a reminder of how lucky we are to have an earthly home (albeit an imperfect one) for our spirits. Like a cute little kid who throws up in my kitchen, having a body that can get flu or cancer or night terrors is a privilege.

When we feel sick and hurt we can remember that we were happy to get to have these bodies, and after we die we will look forward to a resurrected body that will not have to deal with illness or pain or death ever again.

And our kitchen floors will probably be easier to keep clean.

Okay, now I'm REALLY sick!

I thought cancer was a challenge. (It really is.) But I have mercifully not felt very "sick" in a long time. In fact, when my husband and kids get sick I always joke about being the only healthy one in the house, because I "just" have cancer.

Until this week.

Apparently my body can handle cancer and chemotherapy for more than 2 years, but give it a little sinus infection, and I'm down for the count! (Did I miss karate class when I had chemo and they blew a vein in my arm? No. Did I miss karate class last night? You betcha!)

I also became a medical hot potato.

Monday night I came down with sinus congestion/drainage and coughing with high fever and chills. My husband called our bishop, and together they gave me a priesthood blessing, which really helped me get a good night's rest.

On Tuesday I had an appointment with an ear/nose/throat specialist to take care of my right ear (which is completely blocked with 2 years' worth of wax and dried skin debris -- a natural reaction to the radiation treatments). While I was getting my ear sandblasted I mentioned the ongoing fever and sinus congestion/drainage. The ENT doctor immediately waved it aside as a matter for my general practitioner. (I guess he thought my sinuses were in my elbow or something else outside of his Ear/Nose/Throat domain.)

As soon as I left the ENT's office I called my general practitioner, who was already gone for the day. (It was not quite 3:00.) The best his office could do was make an appointment for the following day. ("But I have a fever of 102. Can you call and have him phone in a prescription?" "We can call him, but he'll just tell you to see him in the morning.")

I then called my neuro-oncologist's office, but everyone was out, and I was reminded by the receptionist that they would have referred me to my general practitioner anyway.

So off I went to my local urgent care facility ("Doc-in-a-Box"), where I was seen by a nurse practitioner who treated me like I was radioactive as soon as she saw "cancer" on my chart. I used to be on chemotherapy, so I am obviously immunosuppressed and should get a chest x-ray to check for pneumonia because I coughed. (No, I've been vaccinated against pneumonia, and I've been off chemotherapy for over a month now, and my last labwork was great -- I'm not immunosuppressed. And I don't want unnecessary radiation -- I get enough from my cell phone. And I'm certain that the cough might have something to do with the massive sinus drainage that keeps my head from exploding).

I was finally diagnosed with a sinus infection -- in my NASAL SINUSES (which made even the Doc-in-a-Box people scratch their heads about the ENT not wanting to get involved). They were afraid to prescribe me an antibiotic because I'm "already on SO many medications." (Not really -- just my seizure medicine and a prescription B-complex supplement.) After much consultation with the M.D. who runs the place, they finally decided on a really powerful antibiotic with all kinds of nasty side effects (nightmares and other neurological problems that I already need to be careful about, kidney failure, and probably leprosy and ugly toes, too). No, they didn't want to prescribe the antibiotic I've safely used before, because it only works well for upper respiratory infections (you mean, like sinus infections?) and the scary antibiotic also covers pneumonia in case I have it (BUT I DON'T HAVE IT).



By evening I finally had the right antibiotic in hand, so hopefully soon I'll be on the mend and back to worrying about important things like fighting cancer.

Actually, the one nice thing about this experience was seeing the look on the ENT's face when he read my new patient history form and asked me about the kind of tumor I had. When I told him, he said with astonishment, "You've had that for nearly 2 1/2 years?" I nodded and acknowledged that I was a walking miracle, and yes I already knew that 2/3 of patients supposedly die the first year. He shook his head and said, "More like 90 percent."

Who knows where he got that number. Maybe that statistic doesn't factor in things like prayer and Dr. Fink and the Lord's timetable. I also wonder how much of that 90 percent comes from:

• medical hot potatoes that get dropped
• nasty side effects of over-vigilant antibiotic administration to cure non-existent pneumonia
• exsanguination (bleeding to death) or infection from excessive head scratching or hair pulling
• high blood pressure, aneurysm, stroke -- whatever -- during periods of peak frustration
• car accidents during excessive travel around the medical community
• concussions from being "bounced" between doctors
• complications from untreated sinus infections or other ills that put cancer patients squarely into the medical community's "no man's land."

In any case, I am truly blessed. As a friend of mine said, we need to keep the "prayer garlic" around our necks to keep warding off the real threats to my life (and she's right) but I also intersperse those prayers with prayers of gratitude for the miracles that have preserved and blessed my life for another season.