Sunday, October 31, 2010

This One's for Charlie

Tomorrow is my last chemo day with Charlie before she moves on to a new opportunity as an ER nurse closer to her home. Charlie has been my chemo nurse during the Avastin days and celebrated with me on graduation day in 2008, and we both foolishly lamented how we missed each other during those long stretches between MRI scans. And she's been here to get me started on this latest round of Avastin, transitioning me to a new pair of caring hands.

Charlie also introduced me to Coconut M&M candy, which may actually cure me. It's good stuff -- like an Almond Joy in a candy shell!

I just can't say goodbye to Charlie without thinking of one of my favorite Michael McLean songs, called "One Heart in the Right Place":

There's no telling how much a sunrise means to the one who had a terrible night;
And there's no telling how much a hand to hold means to one whose being led to the light.
And no one can tell, though at times they might try what it means to have one friend that's been true;
So I guess there's no telling you just how much one heart in the right place can do.
There's no telling how far ones eyes can see when someone's vision can inspire a song
And there's no telling how big a dream can be for the one whose learned to never think small
And no one can tell though at times you might try what another person's love means to you
So I guess there's no telling you just how much one heart in the right place can do
But there's been a heart as big as it's dreams that's blessed us all for so many years
It's been in all the right places at all the right times and it's changed everyone of us here.
There's no telling how much that sunrise meant to the one who had a terrible night
And there's no telling how much a hand to hold has meant to someone whose been led to the light
And no one can tell though at times they might try what it means to have been touched by someone
So there's no way of telling you just how much your heart in the right place has done
We wish we could tell you now just how much your heart in the right place has done

Trunk or Treat

(We have a friend who said, "I choose trunk." Small pause for a chuckle here.)

Saturday was our annual Trunk or Treat event at the church parking lot, where everyone passes out candy from their cars. Despite our family tradition of strategic planning long in advance -- and despite my earlier blog with potential costume ideas with the Ommaya reservoir -- we ended up going with something unexpected.
I should say some THINGS THING ONE and THING TWO from The Cat in the Hat:

And Jared and I decided to go as one of the great movie couples of all time: Napoleon Dynamite and Deb. (Deb's side ponytail combed nicely over the Ommaya reservoir!)

It was fun -- to stay in character, we went to Sonic afterwards and ordered tots...

Fantastic Friday

Life moves fast -- especially when staring mortality in the face -- and if we watch closely enough we can capture some precious moments along the way.

Friday was one of those spontaneous precious moment days. My husband ended up being able to take the day off, and with the kids in school we had an all-day date. I relieved my angel driver for the day with full honors and blessings, and Jared drove me down to the medical center for my Friday zip-zap. He was able to meet my friends Terry and Janice (pray for them as they go through their radiation treatments) and some of the radiation technicians.

The rest of the day was filled with other tasks, and we were able to quickly turn a lot of "to-do's" into a lot of "Ta-Da's!" and even squeeze in a quiet lunch together before school got out.

It's kind of funny; other than lunch, the list of activities is pretty boring in regular retrospect. However, in my very non-regular retrospect, I think this was one of the most romantic days we've spent together. It reminds me of our dating years, when we were best friends and getting things ready for his mission and my schooling.

This is one of the gifts of the cancer experience. Before it, I wonder how many fantastic Fridays we've breezed through without stopping to notice and give thanks.

Thursday, October 21, 2010


I got the full treatment today: radiation, Avastin, Topotecan, and Temodar -- and a neuro test! Throw in a manicure and a robe, and I would have just written it off as a day at the spa.

I remembered "fox," "popcorn," and "tree." I spelled WORLD backwards and forwards, but didn't get asked to count backward from 100 by sevens. (I just naturally start doing that when I see Vanessa coming my way!)

Labs look great: I still have bone marrow, chemistry looks good, and so far no tumor cells are showing up in the CSF. I'm still in the game!

I actually had reflexes in my legs, which is something kind of new. Even when I was a kid I wondered why the doctor always banged on my knee with a hammer, because I never had a kick reflex. Maybe this is a new skill, like when I became better at sightreading after brain surgery!

I managed to lose my foot drop and aced the catwalk portion of the exam, walking straight lines on my heels and on my toes and proving once again that I am (and always have been) stone sober. I'm hoping this is a signal that the underlying cause of nerve problems is being defeated quickly.

We'll know more soon. I'll be a five-year cancer survivor by the time we know how this plan of attack has been working.

But what an interesting date to look forward to. I go in for a brain/spine MRI on December 14, 2010, which is the fifth anniversary of the day my neurosurgeon confirmed the word that changed my life: "glioblastoma." I meet with Dr. Fink for a verdict the next morning, which is the 5th anniversary of my Grade IV Glioblastoma blog post. (That post has the most comments of any on my blog.)

Sunday, October 17, 2010

A most amazing, wonderful day

Friday was a most amazing, wonderful day in so many ways!

I remember waking up and feeling very rested and comfortable. As always, I'm just happy to wake up, period. But I realized that I had rested well, and that I was in a comfortable bed in a comfortable bedroom in my home. My husband was with me, and I was madly in love with him. My children were upstairs sleeping, and I was so happy to know that they were part of our family. Together, our family knew and relied upon our Savior, Jesus Christ, and were grateful for the knowledge of Him.

I rolled out of bed to say my prayers, and I noticed how comfortable it felt to kneel without screaming pain in my back and legs. The gratitude list began easily and went long.

Friday had an unusual schedule. Two parent-teacher conferences. One radiation treatment downtown. School holiday for the kids, followed by a Primary activity in the afternoon. And ward temple night with my husband. We decided to try and squeeze in a quick trip to the state fair, just to make it a fun family day. It was an ambitious but fun venture, and we were blanketed with tender mercies to make it an especially memorable and happy day.

The parent-teacher conferences ended up happening back-to-back instead of hours apart, making it possible for both to be completed before I had to run to my radiation appointment. Both teachers had excellent reports; both kids are doing very well, despite the new chaos in our family.

Traffic was uncharacteristically easy, and I emerged early from radiation just as my husband and kids pulled up to take me to the state fairgrounds a few miles away. We arrived just before the gigantic Texas Star ferris wheel opened for the day, and were the first ones aboard. I'm not much of a ferris wheel person, but this one was fun -- I felt as though we were on top of the world for a brief moment.

We attend the state fair once a year, and have our own little family list of favorite "must-do" things. This time they all fell perfectly into line, and with minimal crowds and beautiful weather we just plain had fun. Em was able to do her butterfly ballerina dance, and Jake was able to be the lion tamer in the Backyard Circus. We indulged my husband's favorite car show exhibits, we did the DAR Museum and the Little Hands on the Farm and sampled the disgusting but cool fried offerings that make corn dogs seem passe.

This year Jared tried both fried Frito Pie and fried pizza. (Jake helped him with the latter.) The kids and I had fried PBJ & banana sandwich along with some grilled corn and a caramel apple. Thanks to the local dairy sponsors, we had plenty of milk to drink.

Normally excursions like this involve at one grumpy/whiny/overtired episode before the day is through. With so much going on, it can get exhausting and overwhelming for kids and adults alike. But it wasn't like that this time. It was just a really happy day! I kept sitting back and hoping I was imprinting these memories into (what's left of) my mind, and hoping even more so that they were being imprinted into the memories of my family members. I want this to be remembered as a happy time for all of us, being able to spend time together just enjoying each other.

We left for home having done all that we set out to do, and having plenty of time to prepare for the events ahead of us. Traffic was easy on us again, and I continued to marvel at what a blessed, easy day this was. And on the horizon was a chance to go to the temple that evening. It just couldn't get better than this!

For a fleeting moment, the thought crossed my mind that it was such a good day -- if it had been my last day on earth I couldn't have imagined a better one. (Unless, of course, we had each been about fifty years older that day!)

As my husband and I left for the temple, it occurred to me that I had not taken any anti-nausea medication that evening. It was not something I would typically do, except that between the Topotecan and the radiation hitting so close to my stomach I am more prone to nausea. I am normally premedicated for nausea when I receive Topotecan, but this was the following day, when that would typically wear off. Since I had not yet had a major nausea problem, I figured I would probably be okay.

I wasn't. I didn't figure in the "fair factor." I ended up having to excuse myself during our temple session to avoid catastrophe. It was disappointing to feel so physically awful, and to miss this opportunity that evening. All was fine. Temple workers were swift and kind in caring for me. I'm sure my name was added to the prayer roll by many of the others in attendance that day!

The rest of the evening was rocky as I fought to keep down that evening's chemotherapy, even after taking my anti-nausea medication. It was a long night. But I made it! It was still a most amazing, wonderful day. My temporary physical setback was no need for alarm. God hadn't stopped pouring tender mercies on me that day. I had merely enjoyed my amazing, wonderful day so much, I overdid it!

Kneeling by my bed that evening I had an even longer list of things to be grateful for that day. (Including the fact that a fried peanut butter/jelly/banana sandwich is out of reach for at least one more year!)

Tuesday, October 12, 2010

Another Twelfth!

And this one makes 58 months of cancer survival! We're still pushing our way through this HIGH FIVE year, despite this new twist in the story.

Sunday, October 10, 2010

One week down

The first week of shock and awe is behind me, and it wasn't too bad at all. Only on Friday did my body finally say, "Hey...I'm tired!!!!" I slept early on Friday and most of Saturday.

Monday through Friday was radation and oral Temodar chemotherapy. My favorite part was riding down to the medical center with friends who gave me limo service. We had lots of fun visits and chats together. It's a lousy circumstance for getting to know awesome people better.

The radiation routine is a quick one. I walk in, scan a card, and gown up. They let me keep a gown for the duration of my treatments, so I can "pre-gown" at home to make sure the backyard is completely covered, and then just remove clothes when I get there. I sit down and have a brief chat with Janice and Jean, other survivors on the same schedule, until our turns are called. Then it's about ten minutes in the zapper and out to change and move on.

I'm not sure what the big deal was with the tattoos. They are smaller than freckles. In fact, the radiation technicians mark all over the tattoos on my abdomen with marker.

The session is so short, I usually hear the same reggae song in the background and watch the machine rotate around me a few times, and then I'm done. For my visual on Friday, I began to picture a skylight opening up in my spine to reveal a cringing tumor (gurgling with chemical poisoning) as it begins to shriek at the incoming beams. I had to keep from giggling so I could hold still. After a few days I noticed a slight sunburned feeling on my backside. I wonder if I should put one of those tanning booth stickers on me to check my progress.

The nightly Temodar thing is familiar and easy. Just no late-night snacking, which has paid off on the scale already -- despite getting lots of steroids in the mornings.

I started Avastin this week, too. It is also familiar and very tolerable. An IV infusion every other Thursday. And maybe a Benadryl at night, because once in a while I might get one hive from it. I'm just glad that Avastin is still available. It worked wonders on me before, but its FDA approval is in jeopardy of being pulled, simply because of its cost. (What is the value of five years of my life? Can I decide, or is that now up to a death panel?)

Topotecan is the fourth blow. It goes in through my Ommaya reservoir ("Oh, my -- a reservoir!"). Only Dr Fink or her nurse practitioner may do this infusion, because it is a highly specialized process. This has the longest list of undesirable side effects, including nausea and arachnitis. They pre-medicate me with more steroids and anti-nausea meds before giving it to me. I get this on Mondays and Thursdays for six sessions.

(Arachnitis, by the way, is kind of a chemical meningitis. It has nothing to do with spiders.)

With the exception of Temodar, I have the weekend off before heading on my daily trek to the medical center. I'm looking at the list of my chauffeurs for this week and eagerly anticipating our visits. I look forward to seeing Janice and Jean again. (We're all praying for each other.)

On Mondays I meet with my radiation oncologist for a review and also for blood tests to see if I still have bone marrow producing enough red and white blood cells and platelets to continue treatment.

We're one week down; not sure yet how many more to go. The worst part has been fatigue, as though I finally realized that a major battle is being waged. I'm managing pain very well, and I'm also getting some strength back in my droppy foot. (Just don't tell the kids, because they are in charge of keeping the house free from stuff Mom can trip on!)

Someone asked me if I'm hanging in there okay. I had to reply that I'm not hanging at all -- I can't hang, because I'm being so well supported!

Wednesday, October 06, 2010

You Get What You Get, and You Don't Throw a Fit!

Wise words from my fourth-grader. He learned it in school, and it was definitely blog-worthy!

"You get what you get, and you don't throw a fit!"

We all get something. We get life, and we get mortal experiences that are designed to help us reach our highest potential as children of a loving God. As was mentioned in our recent General Conference by Elder D. Todd Christofferson:

"Life will be long enough for each spirit, and each body will qualify for resurrection."

Mortal experiences are sometimes quite awesome (chocolate, roses, the smell of my husband's neck, and hugs from my kids -- to name a few). And some are quite difficult, because mortality is messy. The good news is that the difficult parts are intended to be temporary (like my daughter's first wiggly baby tooth). But the gains that we make during these experiences are intended to last forever. God has consecrated every affliction to my gain, and these gains are everlasting treasures that far outweigh their price. I wouldn't dare throw a fit!

Instead, I feel both obligated and privileged to look for ways to consecrate these gains back to God for a good purpose.

Tuesday, October 05, 2010

Not for the Spineless

(I just knew that had to be said somewhere in here!)

Two days of radiation are behind me, and they were a blast for the 'blast! After yesterday's first zapping, I stopped by Dr. Fink's office and got my head tapped. It's a lot more comfortable than a spinal tap, getting fluid drained out of the Ommaya Reservoir ("Oh, my! A reservoir!"). Just checking more spots to see if tumor cells are floating around in there, as the previous taps have come up negative. Hopefully this means the mass is just stuck to the wall of the spine and not spilling bad stuff anywhere else. It's just paralyzed with fear and waiting to be defeated.

I had a nostalgic moment last night, starting back on the Temodar routine. Eat a light dinner, wait 90 minutes, take anti-nausea pills and seizure meds, wait another 30 minutes, take Temodar, and sit up for another 30 minutes. No late-night snacking. I magically woke up two pounds lighter, even though I'm on steroids again!

I'm also lighter in my step -- literally. I have foot drop. My black-belted, clog-dancing, neuro-test-acing right foot is now unable to stand on tiptoe, and I walk a little funny now. I stay away from stairs, and I have to avoid tripping. (So the kids are charged with clearing all pathways in the house!) It's not unusual in people with sciatic problems, but my amazing neuromuscular strength was always a reassuring sign until now. Even so -- there are many other things on the complications buffet that I am happy to pass over for this one.

On Thursday, following radiation, I will be staying at the medical center for a double delight: Topotecan in the head, and Avastin in the arm. It will take most of the day, and will add to the hustle and bustle of downtown trips and children's schedules and all of the good stuff of life.

I am so grateful to be surrounded by family and church friends and angels from all over the place, who are eagerly at hand to meet every need. Between the logistical help (rides, meals, childcare, errands, etc.) and the spiritual support of prayers and fasting, I am definitely feeling the love. This helps me square my shoulders, straighten (what's left of) my spine, and move forward (foot-drop and all) with my life.

Sunday, October 03, 2010

'Twas the Night Before Treatment II

'Twas the night before treatment, and I'm soon off to bed
With a pain in my back and a lump on my head.
The Temodar pills once more lined up with care
With other drugs making it easy to bear.

Skilled doctors have made an aggressive new plan.
Temodar, Avastin, Topotecan
In mouth, in my arm, and even through my head
Determined to make all the cancer cells dead.

Insurance and IV poles will be prepared
In hopes that Avastin's fate will soon be spared.
If five years of life doesn't seem worth the cost,
Will FDA's ban mean that this hope is lost?

The spine zapper's ready for me; I'm tattooed,
And surrounded by love and prayers lifting my mood.
I'm forgetting about all the parts in harm's way,
Praying that only tumor cells get every ray.

From the top of my head to the base of my spine,
So far things have gone from bad to fine.
The prayers of the faithful make me quite assured
That any miracles meant for me have been secured.

Friday, October 01, 2010

Comb it over and maybe they'll think it's a Bumpit...

I sported this look while heading off to get my final tattoos and my radiation schedule. Baseball cap or bow might still be in order. But I'm all set -- M-F at 9am all month! This is not for the spineless, but it'll still be a blast to send my 'blast on a blast-off!