...and...TWENTY NINE!

Wow -- twenty-nine months!

I'm at that really really short point on the statistical curve as it (hopefully) flattens out for a while. If I go seven more months like this I might reach "long term survivor" status. When I was first diagnosed I thought I'd be really lucky to survive to a point that is now fifteen months back in the distance.

Once in a while something changes in my schedule for the day, and I end up with "found time." I always like to keep things in mind that I can do with those pockets of extra time on my hands -- no matter how small those pockets are.

And here I am with a whole lot of "found time" behind me (and every minute adds to it). I've started taking an inventory of what I have done with that time so far, and what I should be doing. If I had known in December 2005 that I would still be alive and kicking today (literally -- just ask my sensei), would I have done more with this time? Would I have been a lazy bum and done less? Who knows?

Gotta do what we can, while we can. Right now I can drive myself nuts thinking about what to do next with all this "found time".

I prayed a whole lot for this life, and I'm sure that I should give an accounting for what I have done with what I have been given. I feel like one of the servants in the parable of the talents. Whether I get a little bit or a lot doesn't matter as much as what I choose to do with it.

Some things are easy, like hugging my kids and telling my family members how much I love them. We always want one more chance to do that, and I've been blessed with many chances.

Other things are harder and require me to cut out a little circle and write "T U I T T" on it. (Because I'll finally do it when I get "a round TUITT.")

I'll get the scissors and start cutting circles. After all, if I want to try and stretch this out to twenty-nine years, I need to be filling it with a lot of good stuff!

Gonna Whip Cancer

Those who read my blog know that I have a multi-faceted approach to my survival strategy. Those facets include

faith & prayer
friends (especially those who add their own faith and prayers)
family
staying active (in church, at work, and in karate class)
good music
good food
good laughs
and on and on...

Another contributor is my good care; particularly my neuro-oncologist, Dr. Karen Fink. She not only knows the gold standard of care for GBM, but when my tumor became too aggressive for that she had a lot of tricks up her sleeve. Her involvement in research is saving lives, including mine.

I don't know how she does it, because medical insurance does not cover experimental treatments like the ones that worked so well for me. The fact that I was using up over half a million dollars in uncovered chemotherapy never worked its way into our conversations, as she seemed so intently focused on the good results. (And I'm not the only patient in this situation!) Half a million dollars is nothing compared to the value of living days and even years longer than I thought possible. I could never repay what has been done for me. And yet someone has to at least keep funding alive for this life-saving research.

This has been on (what's left of) my mind as I think about how grateful I am for how well things are going. Also on my mind is my friend and fellow Longflicks rocker who is surviving breast cancer that has recently metastasized to her brain. (I had to tease her about quitting trying to compete.)

And it so happens that I have another friend who is a Pampered Chef consultant, AND it so happens that they do fundraisers, AND it so happens that they also have a special "Let's Whip Cancer" program going on this month. I had to jump on this for two reasons:

1. If I host a fundraiser I can have all of the fundraising proceeds go directly to Dr. Fink's research fund. This is one small way to say "thank you" to Dr. Fink.

2. In addition, during the month of May there are some special "Help Whip Cancer" products being offered, and $1 from each one purchased helps support the American Cancer Society's breast cancer education and early detection programs. This is a great way to pay tribute to my survivor friend.

I was a Pampered Chef myself years ago (before my son was born) and I love-love-love their products. I still use my stoneware and cookware and gadgets, and my husband still loves his grilling tools. And their Pantry seasonings are great, too (all natural/no MSG/very yummy). And the cookbooks are awesome, and so on...

I'll end this commercial with a link to a secure website, where you can view and purchase items for this fundraiser online:

http://www.pamperedchef.biz/erlynne?page=products-main&showId=1614774

Remember -- anything purchased from this link will make a contribution to Dr. Fink's cancer research fund. In addition, any of the specially designated "let's whip cancer" products will also contribute to the American Cancer Society's breast cancer programs.

I hope everyone will enjoy helping me whip cancer in a yummy new way!

I have ten weeks left...

...until my next MRI! (I had one today!)

There was an abnormality on today's MRI...
...if you consider it abnormal to have things look so good this far out, with no treatment during the past two months! (I wouldn't call it an abnormality -- I'd call it a miracle!)

There is no progress to report...
...and that's good news in cancer world!

So I go into the hospital on Thursday for an overnight stay...
...to escort my son, who is having his tonsils and adenoids removed!

Gotta run...
...from the angry mob of readers! (You prayed for me and I reward you with sick humor!)

((((BIG HUGS AND THANKS FOR HELPING MAKE ANOTHER MIRACLE!!!))))

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.

! EMIT NI SDRAWKCAB GNIGGOLB M'I

(Only a brain-tumor savant can come up with a title like that, right?)

To quote Ferris Bueller, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."

I have so much to catch up on, so here's a pretty fast rundown of my recent life...in reverse:


1. Karate belt test and 2. Beowulf:

I already posted about these before I decided to catch up in reverse order. So keep on scrolling past this post and you'll find them.

3. Spring break in Nauvoo:


We drove the kiddos to Nauvoo, Illinois, for a tour of that historic place. We had twelve hours (each way) of bonding in the car. (When I say bonding, of course, I actually mean hearing "are we in Nauvoo yet?" for twelve hours, interspersed with occasional songs.)


We stayed with friends who were very gracious and generous hosts. They even watched the kids so my husband and I could attend the Nauvoo temple. The rest of our activities were very kid-friendly: we went on a wagon ride through the city and saw fun demonstrations of frontier life in the mid-1800's. We also gained an appreciation for the early pioneers who fled religious persecution in Missouri and took refuge in this swampy land by the Mississippi River and made it a beautiful, prosperous city before being forced to migrate westward.


I remember hearing many times that these people endured hardships because of their faith, and that if we have faith we will also be able to endure all that we must face in our lifetimes. That is absolutely true.

As a -- pardon the pun -- side trip, I should mention that during the ride home we decided to read a novel together. I chose Tuck Everlasting, which is on Laura Bush's list of favorite children's literature. (I own all the books on her list.) Tuck Everlasting is a wonderful story that makes you think about whether you would choose to live forever at the same age. It was obviously relevant and very blog-worthy. We had some thoughtful discussions as a family (in-between songs and "Are we home yet?" questions).

4. Homecoming Day:

We traditionally celebrate our son's "homecoming day" with a family picture. You'll see it in my earlier post (below) -- we're in our karate uniforms.

5. Lego my Party:

I mentioned our son's birthday a while ago. He turned the big seven. I remember telling my mom how amazing it was that the little baby boy we brought home is now seven years old. She responded by telling me how amazing it was that the little baby girl she brought home is now that little boy's mom.

We celebrated with a Lego-themed party. In my completely unbiased opinion as the half-brains behind the event, I thought it was fabulous. The cake was easier this year (compared to last year's Star Wars/R2D2 cake). I made the number seven out of Lego-brick shapes constructed of cake rectangles topped with Oreo cookies to make the "bumps". We had freestyle building contests where everyone got an award for something like "Most Creative Use of Green Blocks", etc. We had them team up and race to build something from a pattern. We did the pinata. My husband made a 2-D donkey out of Legos, and they had to pin a Lego "tail" on the donkey. They had to guess how many Legos were in a jar. And so on. We had a fun time, and it was a joy once again to celebrate another birthday with my boy.

6. By this shall men know...

My Relief Society president was eager to know the outcome of my last MRI, so as soon as I left the doctor's office I gave her a call with the good news. She was elated, and asked if she could come by for a visit. We arranged a time early in the following afternoon.

I expected her to come either alone or with her counselors and secretary. However, when I opened the door to greet her I was surprised to find that there were many cars pulling up and parking in front of my house. Women from church were coming by the droves, wearing yellow shirts and carrying yellow helium balloons, and rushing in with hugs and congratulations. One brought a bouquet of yellow flowers. Another brought a platter of cupcakes with homemade yellow icing. Another brought Krispy Kreme donuts with lemon filling. (Someone pointed out to me that the yellow theme was symbolic of the yellow Livestrong bracelet that I always wear.) It was a surprise party -- FOR ME!!

It was so wonderful to share this happy moment with my "sisters." As I absorbed this parade of kind friends, eager to celebrate with me, I remembered an earlier parade. Two years ago, when I couldn't drive and I couldn't even lift my own daughter, these same women were at my doorstep with a continuous stream of service to meet my every need. They were there for me when things were really bad, and now they are here for me while I enjoy a season of good news. Some women could not come to the celebration, but they sent cards and emails, they phoned me and they hugged me the next Sunday in church.

Many thanked ME for inspiring them. I thought it was funny. All I did was keep breathing for the past 27 months. They were the ones who took care of me and my family. They prayed and fasted and exercised great faith on my behalf. They are the ones who have inspired me and kept me going.

Every time I consider all that has been done for me I kept remembering John 13:35: "By this shall all men know that ye are my disciples, if ye have love one to another."

I have been in the midst of many disciples.

Earned My Stripe

"1st Rokkyu"

That's short for "blue with green stripe." I think of it as "blue-and-a-half." It's my latest rank achievement in karate following a grueling two-hour test on Saturday.

It was awesome, though. Sensei joked about it being like childbirth, where the exhiliration of the outcome makes you forget the pain. (We discussed it theoretically, of course, as neither he nor I have given birth.) It was a painful test at times, especially when I got a couple of accidental palm heel strikes to my head by a fellow student (who had to pay with 25 pushups and a stern warning from the instructor that "sorry" doesn't take the hurt away). But I continued to marvel that -- wow -- I am doing this cool stuff! I am doing pushups with a group of people on a cement parking lot behind the studio (and thank goodness it's not raining)! Wow -- now I am standing tall in a sweaty dojo in front position with hands clasped and elbows up and arms shaking, trying not to pass out because I forgot to eat breakfast--and lunch--before coming! Wow -- now I am doing Kata #2 forms over and over again for different instructors! Wow -- I am remembering kenpos and defensive maneuvers and keeping my balance! Wow -- I wonder if that palm heel strike is going to show up on my next MRI! Wow -- I am sweating like a pig...and only people who are ALIVE can do that!!!

Besides -- and I've said it before -- karate is like the ultimate neuro test. I needed to demonstrate memory, reflexes, neuromuscular strength, and balance. I've been off chemotherapy for almost a month now. I'm still riding on some prayers, although many people think I'm cured which makes me worry about "prayer tapering". So it's nice to have this test to reassure me that-- so far at least (knock wood)-- things must still be going okay!

I celebrated with a badly needed session with Carlos the Magnificent, for a new cut and highlights.

During the test my husband earned his orange belt, having just started a couple of months ago. (His test only took one hour.) He shed his yellow belt, so I don't get to tease him about being a yellow-belly anymore. My son had his own test a little while ago -- he's my Little Boy Blue -- just barely in my wake. My daughter has her own gi and took a few lessons herself. We decided that the family that kicks together...sticks together!

By the way, the picture posted here is misleading -- it was taken a couple of weeks before the test, so we're wearing outdated belts (and I'm sporting roots). But this is our annual "homecoming day" family picture and it was worth sharing here since it's karate-themed.

It's on to green for me now. As Kermit said, "it's not easy..." but as with life, the joy is in the journey!

WHITE*

YELLOW

ORANGE**

PURPLE

BLUE***

BLUE/GREEN****

GREEN

GREEN/BROWN

BROWN (3 LEVELS)

BLACK

*Em's rank

**Prince Jared's rank

***Jake's rank

****Half-brain's rank

No, she didn't get cocky and quit blogging!

What, do I think I have all the time in the world to catch up on my blog? Do I need bad news to kick me into high gear? (I hope not!)

I have tons of updates and travelogs and pictures to put in here in order to catch up. Meanwhile, I have to at least share a quick thought from my latest read.

I recently sponsored the book Beowulf for our book group. It was one that I was supposed to read in high school, but didn't. But I finally had half a mind (ha ha) to read it recently, and I love it, because:

1. The hero, Beowulf, is Scandanavian (part of my ancestry is Swedish and Danish).
2. Beowulf comes to save a village that is being brutally attacked by the evil monster Grendel (my monster is a very deadly brain cancer, but we could relate this to any trial that seems to overwhelm us).
3. He fights this monster without any armor or weapons and survives against all odds, and he does it by (literally) hanging in there. He jumps on the monster and rides out the attack by holding fast to Grendel's arm, and ends up ripping Grendel's arm off at the shoulder, forcing Grendel to retreat and die.

I watched the movie (it's gross) and the fight with Grendel is portrayed as a pretty rough ride. We go through some pretty wild rides ourselves, and if we can just hang on when it gets really bad, we'll emerge victorious.

...and TWENTY - SEVEN!

Actually, my 27-month "birthday" was yesterday. Or maybe if we factor in leap year it was two days ago. Good thing I have clinical evidence of a brain!

I'm not a numerologist, but it's kind of fun to realize that I am now thirteen months beyond the best-case median survival point, and I am finally remembering and writing about it on the thirteenth of the month...which also happens to be my son's birthday. He celebrates birthday #7, which many consider to be a lucky number.

We are lucky. We are blessed.

We'll definitely eat cake!

Some dreams fall through

In the wake of my celebration (which I will write more about later) I received some sobering news. Dr. Samuel Hassenbusch, the neurosurgeon who came up with his own treatment for his glioblastoma, died at the end of February. He almost made it to "long term" status (3 years is considered "long-term survival"), and had actually gone for two years without a recurrence. But nine months before he died it came back with a vengeance.

Dr. Hassenbusch has been a role model for others facing this illness, and he had been very kind to me as I am sure he has been to many. It is very disheartening news.

I'm around the same point in the post-diagnosis timeline where he was when his cancer returned. I have the benefit of good clinical results right now, and I am very grateful. But this was a reminder that I have to keep looking over my shoulder.

Stuff I have to remember as I digest this news:

1. Hearing good stories is encouraging and hearing sad stories is discouraging. But my reality is not determined by someone else's outcome. (My reality, however, can be influenced by my attitude.)

2. Some people succomb to this disease very quickly, and some drag it out much longer than expected. Everyone's biology is different. Everyone's life is different. We each have a unique purpose and plan.

3. Everyone eventually dies from something. Meanwhile, life is worth living and savoring while we have it.

4. I don't get to choose whether I follow a similar outcome pattern. But I can choose to follow his positive example of managing life with this disease, and try to give encouragement to others to do the same.

There was a brief line from a sad little song from -- of all things -- the Muppet Christmas Carol movie that popped into (what's left of) my mind as I thought of this very kind and influential person who fought the good fight:

Yes, some dreams come true
And yes, some dreams fall through
And yes, the time has come for us to say good-bye

(and "thank you")

http://www.chron.com/disp/story.mpl/metropolitan/5569831.html

Good to the last drop

"Graduation" photo (from left): Nurse Elizabeth, ME with my hands on Nurse Charlie's shoulders and Prince Jared behind me, Dr. Karen Fink, and Nurse Practitioner Vanessa

My last drop of chemotherapy was delivered two weeks ago. This week's MRI looked great.

After two years of chemotherapy I have officially graduated from treatment and will now just be monitored. My veins get a break for a while. I don't have to worry about the chemotherapy causing stroke. I get to pull my daughter out of preschool and spend more time with her instead of constantly shuttling to office visits and labs. It's a great milestone.

I didn't bring a mortarboard cap (didn't want to presume before I heard the news) but we did take a group "graduation" photo at Dr. Fink's office. They congratulated me and very kindly DID NOT sing the "na na na na -- hey hey hey -- GOOD BYE" song. (I do get to come back -- just for monitoring.)

Today give a prayer of thanks. I called my neurologist, who prayed over the phone with me as we gave thanks to the One who has heard and answered many prayers on my behalf. I also have to thank all of you who have offered those prayers time and time again. And thanks to Dr. Fink, Vanessa, Charlie, Stephanie, Elizabeth, Ellen, Pam-the-MRI-Technician, all the people I'm forgetting to name, and the makers of Avastin and Carboplatin. And I'd go on, but the Oscar theme music would start playing and someone in a cocktail dress would take me by the arm and lead me away.

I STILL NEED PRAYERS!!! I'm sure the next MRI will be another nervous one, because it will be after my first "solo" flight. I'll probably be extra worried any time I forget where I put my keys, so it helps to feel that "floating on prayer" feeling.

As my doctor said when I began maintenance treatment six months ago, this tumor is "nicely put to sleep". Earlier today my kids were listening to Laurie Berkner sing "The Lion Sleeps Tonight," so in the back of (what's left of) my mind I keep hearing music:

In the jungle

My mind's own jungle

The tumor sleeps tonight

In the jungle

My mind's own jungle

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)

Near the good cells

The good gli-al cells

The tumor sleeps tonight

Near the good cells

The good gli-al cells

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)

Hush, my darling

Don't fear my darling

The tumor sleeps tonight

Hush, my darling

Don't fear my darling

The tumor sleeps tonight

(A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh, A-wimoweh, a-wimoweh...)

(ChEEE-ee-ee-ee-ee-MO-um-A-WAY!)

The Straight and Narrow

I am fortunate to have wonderful teachers in our ward at church. Our Sunday School teacher gave a great lesson today on the atonement of Jesus Christ, and how it overcomes both physical death and spiritual death (or sin).

I could not do the lesson justice by trying to recap it here, and there were too many good things to talk about in one blog post anyway (even with my ability to be long-winded). But a couple of minor things in the lesson were particularly timely for me, considering that I am only days away from a potential milestone that has been on (what's left of) my mind. My MRI is this week, and if it looks good I may graduate from treatment and just undergo monitoring.

One comment was made in the lesson about how we need not fear death, because it is part of the plan for returning from whence we came. I believe that to be true -- we all hope to go to heaven someday. We just don't want to be pulled away from our toys and our friends like the screaming toddler leaving his playgroup to go back home. But once we're safely home we realize that it's where we belong, so there is no need to fear.

Another comment was made about the straight and narrow path, which is a familiar term to many. Straight and narrow can appear on the surface to be restrictive and potentially difficult. But our teacher commented on the following passage in 2 Nephi 9:41: "O then, my beloved brethren, come unto the Lord, the Holy One. Remember that his paths are righteous. Behold, the way for man is NARROW, BUT IT LIETH IN A STRAIGHT COURSE before him, and the keeper of the gate is the Holy One of Israel; and he employeth no servant there; and there is none other way save it be by the gate; for he cannot be deceived, for the Lord God is his name." The teacher highlighted the point that the way is narrow -- but it lies in a straight course -- making it clear and possible to travel. Having driven the Alpine Loop in the mountains of Utah, I can appreciate the difference between something that is narrow and full of hairpin turns, and something that is narrow but straightly pointed in the direction we want to go. It's the safest and surest way to reach our destination.

And of course, the remaining portion of my mind wandered to the other straight and narrow path coming up this week for me: the MRI tube. It's definitely narrow (it would seem less narrow if I weren't such a cookie monster), and thank goodness it is straight. In fact, when I go in the tube they stick a little mirror in front of my face that is angled to show me the straight path out towards my feet (which is nicer to look at than the wall only an inch or so from my nose). I'm glad they don't have to snake me through a big tortuous pipe!

Life -- especially the right kind of life that takes us where we really want to go -- is possible for us. The way is narrow but straight, so we can make it. And my upcoming trip through the narrow MRI tube is also doable. I go straight in, pretend I'm having an elaborate spa treatment for about an hour, and come straight out. Then I have a suspensful moment (using the term "moment" very loosely, since my doctor's appointment isn't until the following day) while I wait to hear the results of the scan. That part seems less straight and narrow and more "long and winding road" (in pops Paul McCartney singing, "don't leave me waiting here"...). But it's still doable because of the straight and narrow way of life which is the plan laid out for me by a loving God. And it's also doable because my straight and narrow path of life is lined with many good people who keep me pointed forward and staying upright with their love, friendship, and many prayers.

My Funny Valentine

I know -- Valentine's Day was eleven days ago, and we did celebrate it on time although it's taken much longer to blog about it.

I decided to use what's left of my right brain to make special valentines for my family, using their special songs (you might have heard of them from my blog soundtrack). You can click on the links below to hear them in mp3 format. They were serious and a little sentimental, but if any of these sound funny, keep in mind that these were one-take wonders and far from perfect!

My son's song


My daughter's song


Prince Charming's song

...and...TWENTY-SIX!!!

Yep, it's the 12th of the month -- again!!!

The number twelve is on (what's left of) my mind today, because I'm now twenty-six months post-diagnosis, which is twelve months past the "optomistic" prognosis of fourteen months that I was told to expect.

If I were a bottle of milk this far past my expiration date I'd be pretty darn gross. Luckily, except for a touch of the flu I feel very much alive and not at all sour.

My Coin Sister

Cancer has its privileges.

I got an urgent message last month to call my aunt. "Krista, I need you!" was the tearful voice that answered the phone.

My aunt had just been diagnosed with colon cancer.

I remembered the kindness of others who had "been there" so that they could "be there" for me when the shock of the C-word hit my life. Back then I didn't know if I would survive to be in a position to help instead of being helped, and so I considered it a privilege to be needed by my aunt, and to be available to try and help.

Laughter helps. We call each other the "coin sisters" (I got heads, she got tails). And to make this picture even more perfect, we acknowledged that the person who links us together is her older brother -- my father -- who grew up being nicknamed "Flip." Interestingly, the Avastin chemotherapy that is working so well for me is used off-label for brain tumors, because it is approved for use in treating colon cancer. (I always knew I was covered from top to bottom.) So we potentially had that in common.

Clean living and prayer can't prevent every possible ailment (we all have to die from something at some point), but it paid off for my coin sister. She has gone through surgery and so far things look very favorable. The doctors believe they caught this in time before it spread. So hopefully long life will be another thing we share in common.

So why is there so much cancer touching the people in our lives? I've heard many theories, from cell phones to chemicals to the theorist's political agenda of the day. My personal theory is that we are running out of other things to die from, so our cells have more opportunity to mutate.

We put our babies to sleep on their backs, and we vaccinate them. Fisher Price's Little People toys aren't chokable-sized like they were when I was a kid. Schools have vigorous "peanut free" policies and "zero tolerance" against weapons or drugs (even if said weapon is a kindergartener's finger and the drug is a bag of lemon cough drops). We have better safety features in our cars. We have antibacterial soap and better food safety practices. We have medical advances that save more lives than ever. Workplace hazards are not like they were during the industrial revolution. We try to keep lead out of dishes and paint and pipes and toys. People don't go onto airplanes with more than 3 ounces of liquid or gel on their person. Stuff like that.

The average life expectancy is double what it was a century ago, which means that DNA gets to replicate more often than it used to. Each replication is a roll of the dice, and when it replicates incorrectly, that's cancer. And since everyone has a time to be born and a time to die, if we have eliminated infant mortalities and finger-gun attacks and lead poisoning from the population then something else has to call people home when it's their time. (I'm glad it's not spontaneous combustion.) But now as more people are surviving cancer, and when they finally eradicate it with a cure then we'll start to see something else emerge, like people Botoxing themselves into suspended animation in their extreme old age.

Until then, my coin sister and I share an opportunity to see each day of our lives as a gift. And between heads and tails and having half a mind and being the butt of jokes we have plenty of material for sharing some good, immune-boosting laughs.

Starting #6 of 6

Cycle # 6 of maintenance chemotherapy began this week. My labwork was good enough to proceed, and I aced my neuro tests again (no frog this time; just fox, pizza, and baseball, and proving that -- as always -- I am sober).

I showed up for my neuro test and treatment in my Book Signing Barbie suit, because prior to my appointment I had attended some meetings. The night before I had attended my karate class and talked with a friend about the upcoming Messiah concert (which by the way will no longer have any arias in it, so my Easter tradition of "cancer freak has half a mind to sing Messiah solos" appears to have ended for non-medical reasons). Reflecting on all these activities with a small grin, I realized that this was not what I envisioned two years ago. Back then I was unable to drive, I was in my initial round of chemotherapy and radiation, and living under the threat of a "maybe fourteen months" lifetime of deterioration. The life I enjoy today is much better. It's the life that many people have prayed for (and are still praying for), and I am very grateful for that.

Thus begins the sixth of six planned maintenance treatment cycles. In four weeks I have a turning point MRI. If this one is good, the plan is to graduate from "maintenance" to "monitoring." For as long as the tumor cells stay "asleep," I would be free from bi-weekly chemo infusions. Free from weekly labwork, where the phlebotomist and I go searching for a non-scarred vein. Free from daily Benadryl to help me cope with my allergy to Avastin. The only thing I'd miss would be the regular interaction with the chemo nurses, because their humor is just as therapeutic as the drugs they administer. In exchange, I may get to be more nervous about MRI scans, but I've been there and done that before. It's like Barbra Streisand dealing with her stage fright, perhaps. In time you get used to it and channel that energy into something that works. (And in my case, I float on everyone's prayers.)

If next month's scan ends up with bad news, my doctor still has other tricks up her sleeve. I've seen patients go from hearing "I'm sorry -- just put your life in order" to reminiscing about it long afterward. The Lord's plan is more potent than a mass of tiny cells with DNA gone bad. The power of prayer can still summon miracles and sustain me through whatever must be. So there is still room for hope.

Even if the monster awakens with a vengeance, AND if it's time to put down my pencil and turn in my life's test, then there is still room for hope. In his recent passing, President Hinckley shared his testimony of that hope in a poem that was put to music for his funeral:

What is this thing that men call death,

This quiet passing in the night?

'Tis not the end, but genesis

Of better worlds and greater light.

O God, touch Thou my aching heart

And calm my troubled, haunting fears.

Let hope and faith, transcendent, pure,

Give peace and strength beyond my tears.

There is no death, but only change,

With recompense for victory won

The gift of Him who loved all men

The Son of God, the Holy One.

(Yeah, I think Head Games could be easily bumped from my blog soundtrack to make room for this one!)