Sunday, November 26, 2006

I'll Take Manhattan

It shouldn't take cancer to help make dreams come true, but hey - what a fun way to make lemonade out of the lemons in our lives!

We completed another leg of my "farewell tour" with an amazing family reunion in Manhattan. My three brothers and I (with our families) and my mom celebrated Thanksgiving week together in the Big Apple. It was something my brother Jim and I talked about doing ever since he moved to New York to do his fellowship and residency, and thanks to my mom, Aunt Kay, and Uncle Andrew, the dream finally materialized in a super-fun way.

We all converged on Tuesday at the Marriott Marquis hotel on Times Square, where the twelve of us (four kids and eight adults) split three suites. It's a beautiful hotel, and I remember staying there in 1994 for a business trip, when we saw Big Bird in the lobby, because they were having the Daytime Emmy Awards there.

Everyone arrived safely, and then after hitting Sbarro's for lunch (which was funny - one of my brothers commented that we came all the way to New York City and ate "mall food"), we set out to tour 5th Avenue, with its many wonderful shops (including Tiffany's, where I - happily - did not have a seizure amidst the brilliant display of diamonds) and beautiful landmarks like St. Patrick's Cathedral. On the way back we passed by St. Thomas Church just as an evensong was beginning. Having sung with Evening Song, a choir whose name was inspired by the beautiful "evensongs" our director heard during his travels to Cambridge, I always longed to hear a real evensong myself. We stepped in and heard the choir, comprised of fifteen men and twenty-four boys. It was an unexpected delight to hear such beautiful music, and I was grateful for the ability to appreciate it.

We also hit the new Toys R Us store, which is a fantasy land that includes a ferris wheel ride. I took my son and niece and nephew on it, and it was a blast. Afterward, some of us had dinner at Sardi's that night, which was a favorite spot from a prior trip.

On Wednesday we went to Rockefeller Center, including Top of the Rock (where thankfully we did not get blown off the roof despite the wind), and then we had matinee tickets (second row, center) to see Beauty and the Beast. It was, of course, very well done, and we really enjoyed the character of Gaston, brilliantly played by Donny Osmond. He was my first crush, before Shaun Cassidy took over when I was ten years old (and before Jared took over for good when I was fifteen). I met Mr. Cassidy during a trip to NYC in 1995, and so this time we rushed to the stage exit to catch the big D-O. It cost us a hard-earned chance to see the David Letterman show, but it really paid off. I got Donny's autograph and a picture, and so that was another unexpected delight. We also had a couple of fun Seinfeld-inspired dining experiences, including the black-and-white cookie and soup from SoupMan (the place that launched the "Soup Nazi" episode). They actually have fabulous service, going out of their way to be "more soup, less Nazi", and the lobster bisque really is incredible.

On Wednesday night they inflate the balloons for the Macy's parade, so we headed up near Central Park to watch that happen. My son and I had fun taking turns with the camera, getting close-up pictures and guessing what each balloon was. It was kind of like seeing the parade up front and in reverse, and without the marching bands and Broadway dancers.

When the parade started Thursday morning, it was cold and rainy. But we stayed warm and dry, watching the parade all together from the window of one of our hotel rooms. We put the television on, and so we would see something pass by and later hear the commentary about it on TV. It was nice to have such a great view without having to sit out all night in the rainy cold. One of many things to be thankful for on Thanksgiving. We later feasted on turkey and trimmings at The View, the revolving rooftop restaurant at the top of our hotel. The abundance of good food and family was symbolic of the innumerable blessings that we have received, especially (but not exclusively) during the past year.

On Friday we ignored the traditional Black Friday shopping madness and ferried to the Statue of Liberty and Ellis Island. I brought a list of our immigrant ancestors who came from Greece, Denmark, Sweden, England, Scotland, Ireland, and Portugal, and I couldn't help but think what it must have been like for them to pass Lady Liberty and step onto Ellis Island. We also went to the World Trade Center site (Ground Zero), which is a sobering place. It was hard to explain the significance of it to the kids.

Friday was the 24th anniversary of the first date I went on with Jared. Friday was also my mom's birthday, so we wound our way back to Junior's (near our hotel) for a party with some good diner food and the best cheesecake we'd ever eaten. Then some of us went to the Manhattan temple (across from Lincoln Center). It was a really awesome day.

Saturday morning gave us just enough time for breakfast together at the hotel restaurant before we each left for home. We discussed where we might go next. (I'll have to consult my "hair list".) It would be nice to be like Cher (or McDonald's McRib sandwich) and keep having "farewell tours" over the years. This trip might not have happened this year, had my tumor been benign. There are many experiences that would have been missed, because sometimes it's too easy to forget how precious each opportunity can be, until mortality raises its ugly head. So even though it came with cancer attached, I'm glad I was able to take Manhattan.

(Come back for pictures!!)

Saturday, November 18, 2006

Seize the day...again...

...or something.

Yesterday was the closest I came to having one of my original seizures - all except the smell aura. It was sickening and terrifying. I forgot how bad those used to feel.

It may be a reaction to my chemotherapy. It may be the tumor continuing to grow despite chemotherapy. I won't know for sure until my next MRI, which will be twelve days before Christmas.

Family members flipped out. If only I hadn't been so cute and cuddly this wouldn't have to be a painful experience for others. If I'd been a little b****ier they could all be working on their "Ding Dong" chorus instead of worrying about me. (But I'll try to stay cute and cuddly just the same.)

My doctor prescribed some Benadryl and an increase in my seizure medication. It helped us have a nice family outing with my brother (Dr. Jim) who is in town for a medical conference and fellowship interview at a time that happens to be the anniversary of his saving my life. The ER doctor who treated me last year assured me that I was not having seizures and that I did not have a brain tumor, and that this would all probably go away and we could laugh about it six months later. My brother insisted that I was having "textbook" seizures that should be explored further, and he gave me the confidence to overcome my intimidation and seek further care, which led to the diagnosis and intervention of the most aggressive kind of brain tumor. Otherwise, I would not have lived six months, because the ER doctor would have killed me with his negligence. So I was happy to be able to at least treat Jim to some fajitas while he is in town. Afterward, he and my husband assisted my dad in giving me a priesthood blessing, and I had a very good night's sleep.

This experience is a reminder of all that is at stake right now: more legs of my "farewell tour", another Messiah performance, Christmas with my family, my book release, my 18+ year honeymoon, time with my children, my independence, my livelihood, my life. My very sense of security. This seizure threat makes me feel like Carol Ann in Poltergeist: "They're ba-a-a-ck!"

As I pondered and wrestled with this latest challenge, I was reminded of Viktor Frankl, the holocaust survivor whose experience is recorded in his book, Man's Search for Meaning. He was deprived of everything: material possessions, family, and security. He lived under constant threat of death as he witnessed the brutality against fellow concentration camp detainees. Yet he concluded that "Everything can be taken from a man but ...the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

There have been times when I wondered if my ability to keep going is at least partially based on my choice. I know that there is much beyond my control, and I know that ultimately we all die, whether we choose to or not. But I know that I do control and own the decision to "despair and die", or to hang on and hope for the best -- like the apple that has to be shaken off the branch. It is my choice whether to shake my fist at God or to take his yoke upon me so that my burden may be lightened. It is my choice whether to hide under the covers or face the monster head-on (and for those of you who are Lost fans like me, I hope I don't do it Eko-style). It is my choice whether to live poorly or live well, and whether to die poorly or die well.

Today is a new day -- a new gift. I hope that seizing the day today has nothing to do with my brain short-circuiting.

Tuesday, November 14, 2006

Neuro Test & Toxic Drip

Today was my third chemo infusion (the long one, because it is both Avastin and Carboplatin, plus steroid and anti-nausea), preceded by my monthly neuro exam.

I did pretty well with the neuro exam (100/93/86/79/72/65/58/51/44/37/30/23/16/9/2; avocado/monkey/softball, etc.) - EXCEPT that something is affecting my vision. For the first time, I was unable to see the nurse practitioner's finger wiggling in my upper left field of vision. I could tell there was a hand there, but I didn't see the finger (much less the wiggle) until she brought it down & closer. That was a first, and while she didn't make a huge deal of it, it was noted and will be followed, and it was nonetheless the first "clinical" manifestation that has shown up in a neuro exam. She also commented that one of my pupils is larger than the other, although she said she had noticed that before. No idea what all this means, so naturally I started conjuring up theories of rampant tumor spreading. Of course, I called my brother (Dr. Jim) to talk me off the ledge, and as always, he offered some plausible reasons not to worry.

My next infusion is in two weeks, and my next MRI scan is on December 13. They almost tried to get me in on December 12 (aaaagh - 12/12 - my craniotomy anniversary and those unlucky twelves!!!), but I was able to get a "luckier" date. We have no idea what the next MRI will show, and how that will impact our Christmas plans, but I was told that the last four patients who have been using this protocol have seen good results, including shrinking of the tumor. So I hope and pray that I can be number five. My husband and I have a tradition of giving each other one Christmas gift that cannot be purchased, and I think that good news about my treatment would be one he would like. Much nicer than last year's pre-Christmas craniotomy and cancer diagnosis.

My chemo infusion went well. I brought my laptop and did some work to pass the several hours that I had to spend there. I was able to drive myself home, but I have been enduring a nasty headache (typical side effect of the anti-nausea drip, plus lots of time on the phone and computer, and some minor stress over the eye thing). I forgot to ask about what to take for pain, because:

1) Tylenol is tough on the liver, and so is anti-seizure medication and chemotherapy.
2) Aspirin and ibuprofen can cause bleeding and ulcers, and so can my chemotherapy.
3) I work with a company that has a really great electrostimulation device that works miracles for pain relief (, and I own one of the devices, but electrostimulation is contraindicated for malignant tumor sites.

So for now I think it's down to good nutrition, staying hydrated, practicing stress management, and getting some rest (and probably wrapping up this blog entry to give my eyes some rest).

As I returned home today, I stopped by the mailbox and got another side effect of my chemo treatment, although this time it was financial instead of physical. My insurance won't cover my new chemotherapy, because it is still considered experimental. $8500 every two weeks goes into the "Patient Pays" column. Right now it's just a minor annoyance instead of a major worry, because long ago my doctor's office mentioned that possibility with experimental treatments, and they said they know how to fight with the insurance company to get it covered. Hopefully they will. After all, my tumor has become resistant to the covered chemotherapy, and this new stuff is the best alternative for me. If worst comes to worst and they are unsuccessful getting reimbursed, I guess I just fork over a little money at a time, giving my doctor lots of incentive to keep me alive and capable of working for many years!

A fun day, indeed. At least I can be grateful that:

1. I'm HERE.
2. I could walk my son to school and drive myself downtown for treatment today (and I didn't get lost or mangled in an accident).
3. I had access to gold standard treatments, and since those stopped working I have had access to promising new stuff (and the insurance problems probably won't keep those from me).
4. I had friends who were more than willing to take care of my kids, so that today became a fun playdate for them instead of "Oh, no - Mom has to go to the hospital again".
5. I have a brother who can talk me off the ledge.
6. If worst comes to worst and I do go blind: a) I won't see cellulite, wrinkles, clutter, or "impulse buys" at the store; b) my son is learning to read to me anyway, so we can still have delightful storytimes together; c) my husband loves new techno gadgets, and there are enough voice-activated computer gadgets that would let me keep blogging and working and doing other writing projects; d) I can still hear (and sing) beautiful music; e) I remember most of the book and movie Gone With the Wind, so I can still enjoy it without sight; f) it would take away the temptation to peek at my MRI films before the doctor reads them; g) I always wanted to learn braille; and h) maybe this would make a private limo service a tax-deductible medical expense????
7. I know that this process continues to be watched over, and I continue to be carried through this on the prayers of many (thank you!!!)

Monday, November 13, 2006

Happy Anniversary

Normally, the number thirteen is a lucky one for us. Our son was born in the thirteenth hour of the thirteenth day of March, in the thirteenth year of our marriage.

I'm really not very superstitious, but the number twelve has become less desirable to me. I had brain surgery and learned that the tumor was cancer last December 12 (12/12), and I learned of my tumor recurrence on October 12.

Last year, on November 12 (a happy twelve), our family went to Six Flags. Mary Kay (world's best employer and best-selling cosmetic line - buy their stuff!!!) has an annual company picnic on the second Saturday in November, and they rent the Six Flags amusement park in Arlington. It's always been fun, because despite a lifelong fear of heights, I loved riding rollercoasters and would always head for the big, scary ones. I didn't know that last year would be my last ride on a rollercoaster. (A real one, at least -- I still get to ride the figurative rollercoaster of life.)

It was the next day - Sunday morning, the thirteenth of November - when I had my first known seizure. (Okay, so there was an unlucky thirteen for me.) I was getting my daughter dressed for church, when I suddenly had a deja vu feeling followed by a really sick feeling, like I was going to faint. As I sat down to compose myself, I started smelling a really weird smell. In the past, I would awaken as though I had been having a nightmare -- adrenaline rushing, sick feeling -- except I wouldn't remember a nightmare; only that same strange smell that would waken me. I had no idea what all this was, and yet I remember an ominous feeling haunting me that day. I tried to brush it off as no big deal, but I remember feeling very emotional, especially when singing with the Primary children at church: "Faith is knowing I lived in heaven before my mortal birth/Faith is knowing I can return when my life ends on earth..." But thankfully, as this story unfolded I was flooded with peace and I have been able to lean on the rest of that verse: "...Faith is trust in God above; in Christ who shows the way/Faith is strengthened; I feel it grow, whenever I obey."

It was more than a week after that seizure that I learned it was indeed a seizure caused by a brain tumor, and I started this blog. I knew it was a serious situation, but I had no idea that my life was in such danger. It was a month later before I knew I had a cancer that claims many lives within the first year after diagnosis.

This past weekend was Six Flags Saturday again. We started the day under the Saturday Morning Lights, watching my son's last football game of the season and taking him for his team photo, before heading to the park. My days of riding rollercoasters are over; I have a hole in my brain now, and I am too vulnerable to bleeding, so I'm under doctor's orders to stay off. But I still enjoyed the day, especially now that my son is finally over 42 inches tall and can now go on more rides himself. It was a thrill to watch him having so much fun. We were able to ride the carousel together, and he took me "driving" in an antique car (which appeared safe until we had to stop and the people behind us slammed into our rear at high speed - ow). The rest of the time I got to wave and take pictures and absorb the joy from this five-year-old blur whizzing past me on the exciting kiddie rides.

Even so, I couldn't help but remember that "last day", last year, before my life changed. And as I dressed my daughter for church yesterday morning, I couldn't help being haunted by the real-life deja-vu, and I wondered if I was going to have another seizure. I didn't, but yesterday was the first day I really started feeling like a chemotherapy patient. I fell into bed shortly after getting home. My husband took over choir practice for me that afternoon so I could get more rest. I would try to sleep, only to be awakened with rushes of adrenaline that would make me panic and wonder if a seizure was coming on. I would remind myself that I'm taking a super-high dose of a really effective seizure medication so there was no reason to worry about it.

This morning -- the thirteenth, and the actual anniversary of "seizing the day", I got up out of bed and was rocked with nausea as soon as I stood up. It's a little better now, but I still feel pretty lousy and tired. I am grateful for the words of a cancer survivor who spoke at Relay For Life, who acknowledged that it is hard to feel hope when you don't feel well. It was helpful to remember that and guard against feelings of discouragement. I also remember the words of Lance Armstrong, who said that the better he got, the worse he felt. And finally, I remember my husband giving a talk in church on Sunday, which included reminders to trust in the Lord instead of the arm of flesh. There is great peace in knowing what to believe in.

And after all, here I am: one year after symptoms presented themselves, and less than a month away from the anniversary of my diagnosis. As lousy as I feel today, I still don't feel anything like someone who is fast approaching their expiration date. My lab results were good, so the chemo hasn't destroyed anything good yet (hopefully it's too busy destroying cancer cells). I'm still a brain tumor savant; just a really tired and queasy one.

Thursday, November 09, 2006

My days are numbered...and I'm an owl

Jared and I were always big fans of the comic strip series, Calvin and Hobbes, and one of the many funny moments I remember is when Calvin (age six with a vivid imagination) thinks he has turned himself into an owl. He walks somberly into the kitchen to see his mother, and simply declares, "I'm an owl."

As I lay in bed at 4 am, no longer able to sleep (despite being exhausted all day yesterday), I was tempted to poke Jared and tell him that I, too, am an owl. But I got up and decided to blog instead (my marriage is important to me). Insomnia isn't new to me. I come by it honestly. I could probably call my mom right now, if it didn't mean interrupting her morning walk or her Christmas decorating. When she visits for an overnight stay, I usually awaken early to find my oven cleaned, my kitchen restocked with groceries, and Mom either walking the dog or absorbed in a book, dressed and ready for the day ("What can I do for you, sweetie?").

Being a nocturnal animal has its drawbacks. By day I manage to get things done, but sometimes people have an alarmed look on their face when I look like a zombie. It's not the kind of reaction I try to get when I enter a room. I'm usually too hyper and focused on my "to-do" list to take a nap. My husband offered to get me some ether, but I declined. At bedtime I tend to fall asleep quickly (no surprise there) but after a couple of hours the little hamster wheel in my head starts spinning (let's hope glioblastoma cells can't handle the centrifugal force).

Those first waking moments are always interesting. During the initial shock following cancer diagnosis (and recurrence) I would awaken to a sickening feeling in my gut. However, more often I awaken with a prayer of gratitude for the abundance that I have, starting with the warm and cuddly person next to me. Last week my son (an owlet) wandered into our room and crawled into our bed, so (before transferring him to a beanbag chair at the foot of the bed) I awakened with my two favorite people flanking me on either side, and the nice realization that I was (literally) surrounded by blessings.

My thoughts then turn to all of the things that I need to get done. I have amazing clarity and organizational ability at that point, but as soon as I step out of bed these thoughts disappear and I kick myself for not having written down the fruits of that mental harvest (although I think part of our eighteen years of wedded bliss are attributable to the fact that I don't turn on the light and sit up in bed scribbling notes).

And then sometimes I start dissecting what I know about glioblastoma, as though it is some lame attempt to try and solve the problem myself. But it's a big and complex problem that I can't solve myself, so I struggle to fight off such thoughts. Fortunately, I sometimes hear a voice reminding me that I shouldn't "trust in the arm of flesh..." " thoughts are not your thoughts..." and stuff like that. I also remember what the Lord told the prophet Joseph Smith when he was undergoing intense persecution: "Thy days are known and shall not be numbered any less."

I'm sure that goes for all of us. We know that there is "a time to be born" and "a time to die." Maybe all of our days are numbered and known and appropriate to our purposes here. I've decided that my diagnosis doesn't necessarily change WHEN my life will end here. It's just a creepy, grim insight into HOW my life might end here. Like the Wizard of Oz, it's both "great and terrible" to have some advance notice.

I'm getting sleepy as the dawn rises - it's time for Mama Owl to get the owlet off to school.

Sunday, November 05, 2006

Brain Tumor Savant

I remember waaaaaaaaaaaaay back in the 70's, seeing a television commercial about a fragrance (Enjoli, in fact - which goes to show you the power of music to help you remember a product's name.) In the commercial, a woman struts around, singing:

I can bring home the bacon;
Fry it up in the pan;
And never never never let you forget you're a man!
'Cause I'm a woman...ENJOLI!

The music was effective in helping me remember the commercial and the product three decades later, but it was never effective in persuading me to buy the product. (I guess when I was nine years old I didn't care about bringing home bacon to my man, and after I grew up and did bring home the bacon to my man, I was wearing Chanel No. 5. And now I just don't like the word "bacon" because it reminds me of carcinogenic foods.)

ANYWAY...that little tune went through my head as I started to think about all the cool things I can do, even though I have brain cancer:

I can sing in Messiah;
I can run my own biz;
I can write a book, be a mom, and clog dance like a whiz!
'Cause I'm a brain tu--mor SAVANT!

My husband and I caught part of a documentary a while ago about savants: people with extraordinary mental abilities despite profound disability. I remembered learning about them in college (back then, they were called "idiot savants"). It's kind of funny. I'm not exactly Rain Man, so don't drop matches and expect me to tell you how many are in the pile, and don't ask me what day of the week was July 25, 1967 (...although that's an easy one -- it was a Tuesday). But maybe between the tumor and the treatment, something is tickling what's left of my brain. After all, I can sightread music BETTER than I did before brain surgery. I can even draw better (something I've never done well). There are times when I work better, write better, and think better. And thanks to monthly neuro tests, I can now count backward from 100 by sevens pretty darn fast - a lot faster than my family and friends with brains intact.

I remember going into surgery last December, not knowing what would be left of me afterward. Would I still be me? Would I still be able to do what I need to do and what I like to do? The retention of my capabilities has been astounding, and to find that I can do all that and more is a great blessing.

Granted, I still have my short-term memory flaws ("Dang - I was just carrying my shoes. Where are they?") and I get really tired and sore at times, to slow me down after a day of pushing myself. But as I consider what I have done and what I still can do, I often remark to myself that this is not the face of brain cancer that I had imagined.

When I lectured about dental lab quality system requirements at a college of dentistry a couple of months ago...when I chaired an FDA/medical device industry coalition meeting...when I met with my publisher...when I directed the children's Primary program at church...when I was invited to sing Messiah again at Christmastime...when I sang two concerts in Utah (mostly from memory)...when I did a board meeting presentation the day after my last chemo infusion...when I helped a client get a new product approved by the FDA...when I remembered something from a child psychology class that helped me work with my son...when I picked up the clarinet and played like it had only been a couple of years instead of a couple of decades...and so on...there is always a little voice that says, "This is the real face of brain cancer - it's not so bad, is it?"

Okay, well, maybe it is so bad. It's pretty darn awful to think about. But I don't have to think about it so much when I have been blessed with as normal a life as one can have under these circumstances.

I remember reading that Einstein only used something like ten percent of his brain. At first I thought, hey - if this is true, then what is the big deal about brain cancer? Can I really lose ninety percent of my grey matter and still have genius potential? Who knows? I guess we don't use the full capacity of our minds, and there are a lot of redundant functions in the brain. However, I guess if that critical ten percent is gone, it doesn't matter how much is left. So far it seems like I've got enough of those good cells going strong for now.