Wanna See Something Really Scary?

It's Halloween, or as they say at my son's school, it's "Scarecrow Day". We were busily assembling Jacob's scarecrow costume last night, and I couldn't help but think of the scarecrow in the Wizard of Oz ("If I only had a brain!").

When my husband and I first started dating back in high school, we saw the Twilight Zone movie together, and one of the memorable lines from that movie was, "Wanna see something REALLY scary?" Earlier this month, as I was putting up the Halloween decorations, I caught a glimpse of the portfolio case containing all of my MRI films. For a brief moment I thought, "Hey - wanna see something REALLY scary?" And I wondered how creepy it would be to decorate the house with MRI pictures of my brain! I decided it was too creepy, so in the portfolio case they stay...under the couch...but the handle peeks out ever so slightly, so I know they are there...(shudder...)

I also can't help but remember the scene in Steel Magnolias, where (SPOILER ALERT) Julia Roberts goes into renal failure and collapses into a coma on Halloween, with her kid screaming nearby. My new chemotherapy puts me at risk for kidney problems, and a coma isn't a far stretch for a lot of reasons, so it's just an icky, awful association to have sitting there in what's left of my mind. It's sick and twisted and scary, but some people go out of their way for that kind of thing this time of year.

Finally, I can't help but remember my craniotomy every time I see a carved pumpkin!

This afternoon, after school, "Scarecrow Day" becomes "Halloween", and Jacob transforms from his scarecrow persona into a Power Ranger. We're taking on a Disney theme, as a nod to our vacation earlier this year. Our daughter will become Minnie Mouse, and my husband and I will be Donald and Daisy Duck--that is, unless the beanbag chair-sized duck butts on the costumes don't let us fit into our car, and we have to turn to our backup costumes of Mr. and Mrs Incredible (from the movie, The Incredibles). We have a "trunk or treat" activity at our church parking lot (where everyone sets up their cars in the parking lot as trick-or-treat stations and a zillion kids turn out in their costumes - it's super fun), and then we get to come home and play games and greet other trick-or-treaters that come to our door.

It will be fun, although as with any annual event (birthdays, holidays, etc.) there is a wistful thought that maybe this will be our last Halloween together. Maybe, or maybe not. And really, cancer diagnosis aside, this is the way it is for everyone. We never know if it's our last Halloween, or even if it's our last Tuesday. My mom is the picture of health, but I talked to her today as she drove down the street using her cell phone. We both acknowledged that we couldn't predict who was more likely to survive the day. Every day is a gift. And today - like any day on the calendar - is a day for having fun, despite the scary things that might surround us.

Not bad for brain cancer

It's always nice to be missed. I've been so tardy in updating my blog, and as a result there have been many people checking in on me to see if I'm okay.

It's a hard question to answer accurately. I'm not okay in the sense that I have a nasty cancer that is making me (literally) lose my mind, bit by bit. But I am okay in the sense that I'm surviving my new treatment (so far), my spirits are up, and I'm still here. In fact, I'm not bad (for brain cancer, at least)!

I have my next "toxic drip" on Wednesday this week. Toxic Drip # 1 was a lot more tolerable than I thought it would be. I was fine for a few days, crashed for a few days, and went back to being fine. I still have hair, I still have insomnia, and I get an occasional mild headache (the tired kind). I'm back to bouncing between moments of brilliance/accomplishment/great stuff, and moments of "dangit - why did I just walk into this room?"

Last week was kind of fun. For a minute I wondered if I was having a Bruce Willis/Sixth Sense moment (WARNING - SPOILER COMING UP IF YOU HAVEN'T SEEN THE MOVIE) where I died and didn't know it, because a whole bunch of flowers started showing up at our house! It was unexpected...but awfully nice! I loved wafting through my house, enjoying the fragrance and the beautiful sights and pinching myself to make sure I was there in the flesh. (And - HOORAY -- I was! Not bad for brain cancer!) Some of the flowers came with cards that identified the senders, and some were anonymously sent. So for those who sent me flowers but didn't hear back from me, please know that I got them and I love them!

Membership Has Its Rewards

This subject came up yesterday as I chatted with a new friend during chemotherapy, but it keeps resonating in my cancer-riddled brain: I feel like I'm in a really lousy club that happens to have really amazing members. Cancer has touched family members who are dear to me. Cancer has touched good friends of mine. Cancer has introduced me to new friends who are also brave in their battles. Cancer has touched the president of our church. Even my radiation oncologist is a cancer survivor. It goes on.

I recently learned that one of my favorite high school teachers has cancer. He was our choir director and our Cloggers West director. The one who introduced me to my two favorite talents, who gave me my favorite high school memories, and who put me in touch with my gaggle of girlfriends and the boy that I would marry. I had the pleasure of visiting with him on the phone before we left for Utah, and then again in person when he came to our concert in Salt Lake City. He has been a beloved teacher and mentor to many, and his influence has had ripple effects more than two decades after graduation. I always think of him gratefully every time I put on my clogging shoes, when I direct my church choir, and when I glance at a picture of my high school buddies; and I'm so glad I was able to express my appreciation to him during our visit.

As I survey the amazing people who have been in this battle -- from those just joining the ranks to those in the crossfire and those whose battle is long over -- I can't help but wonder if I should just consider myself lucky to be among such a group.

For a while I wondered if it were a chicken-and-egg question: Do only great people get cancer? Or does cancer just make people great? I think cancer is allowed to touch great people, because they are strong enough to handle such a trial. And I think cancer is allowed to touch anyone and make them great, because of its refining capabilities. So as much as I cringe saying this, it almost becomes an honor to be one of the crowd.

Someday -- hopefully a LONG time from now -- when we're all sitting in the great beyond, reflecting back on our lives and deaths, I look forward to the association with others who endured this experience called cancer. We'll have a little club: the SUCUWED's (SUrvived Cancer Until WE Died). No initiation process, since the shock and awe and all the other stuff that comes with diagnosis and treatment is worse than any hazing incident on the news. But membership has its rewards. We get experiences that come from no other source. We get miracles (regardless of whether we are cured or killed). We get cancer glasses that let us see everything as more precious than ever. We take nothing for granted. We have the ultimate appreciation for our Savior, Jesus Christ. We get astounded by outpourings of love from those around us.

I pray for Terry, my teacher, and his family. I think I know what to pray for, since I'm in the same club. I hope others who read this will pray for them, too.

Toxic Drip # 1

Today was my first infusion experience with the new chemotherapy combination of Avastin and Carboplatin. It was definitely different from the Temodar experience.

• It is delivered intravenously, so I didn't have to take it on an empty stomach or sit upright for 30 minutes afterward (this is both a pro and a con)
• It was a four hour drip (con), but it seemed to go by quickly (pro)
• It is delivered with a dose of anti-nausea and steroids (also, both a pro and con)
• The nurses who work with me are very comfort-oriented. I was set up in a nice recliner with pillows and a little desk for my laptop so that I could do some work. (pro, even though I could only work offline). They had a TV, DVD player, blankets, snacks, and drinks, if we wanted them (we didn't, but it was nice to know that they were there, so definitely a pro)
• My husband was able to come with me and stay with me the whole time (PRO)
• I got to meet other patients and their spouses, and I think I made a friend (pro)
• I got a flu shot and pneumonia shot (pro) because I will be more vulnerable to both (con)
• It was easy to tolerate - so far (pro). I hope the tumor disagrees (which would be a super PRO).

Another new experience, and another new adventure. I joked with the nurse about having omitted "traffic" from the informed consent list of adverse events relating to the treatment. Overall, it wasn't as scary/gross/awful as I thought it could have been. I hope and pray that it stays tolerable for every part of me except the tumor.

Like Baby Teeth

It's Chemo Eve. Not as festive as Christmas Eve or New Year's Eve, but it's in the forefront of my mind. And unlike other festive occasions, where I turn down offers of the traditional cocktail (good thing, since I need all the good brain cells that I can keep), this time I will be having a cocktail - a mixture of special chemotherapy drugs that sound like a stark contrast to the "easy" Temodar that I was taking before. So... tomorrow I'll raise my IV bag and make a toast to the new chapter in this scary story.

We continued my husband's birthday celebration over the weekend. Part of it included some shopping, where I found a cute little "tooth fairy" box for my son. He'll be six in March, and he is excited about the possibility that he might soon start to get wiggly teeth that fall out.

And of course, since everything is a life analogy when I have my cancer glasses on, it occurred to me that our earthly existence is like having baby teeth.

I received a body when I was born, and I leave it behind when I die. This whole cancer thing is just about my body. It's not about ME. And besides, I already knew that this isn't even supposed to be my permanent body. It's like the baby teeth that we knew would eventually fall out. My body is the temporary, trial model that I get to use for a little while here until it wears out/gets flattened by a truck/chokes on something/whatever. I may get a little wiggly at first, and then -- out. Jared won't have to put me under his pillow, but he will get a settlement from the life insurance fairy.

And when all that happens, I'll still be ME - just waiting for my permanent body and hanging out in a different place and looking forward to being reunited with my family someday. My permanent, resurrected body will never get cancer, it will never die, and we'll just hope that it will also be cellulite-free. As Job said, "though worms destroy this body, yet in my flesh shall I see God."

Even so, I don't exactly view my demise with the same enthusiasm that my son gives to his "tooth fairy" box. As much as we recognize the necessarily temporary nature of life, and how it fits into the permanent plan, we still reverence and respect and try to protect life. We don't try to wiggle out of it early, like a kid will do with a loose tooth. I have a good life, and I want it to last as long as possible. But since we all must face our mortality at some point, it is comforting to realize how it fits into the grand scheme of things. It's just temporary, like baby teeth. It's just a body that is programmed to wear out, break, and die. It's just my body that is in danger. It's not ME.

Mourning Morning

Ugh. It had long faded into mere memory, but this morning it was back: that awful feeling in my stomach, and the grief and worry as I awaken to the realization of what is going on. It's just part of the mourning process. It's natural to feel a sense of grief when something meaningful is threatened or lost. My life is meaningful. It is wonderful. I have marveled at the abundance within my life. So, of course the possibility of leaving it behind sooner than hoped is something worthy of grief (even though I know it is a temporary loss). And because things were going so well for so long, there was the hope that things would continue in a miraculous way. And maybe they still will, somehow. But adjusting one's view when things change can trigger grief for the "old" picture. So I awaken to that awful sick feeling again, and I guess I will at least for a season.

Luckily I still awaken to the realization of great blessings (including the one slumbering next to me), and it helps. It reminds me of a poem my mom wrote a long time ago, called, "Morning":

Still half asleep, I hear the rain -

Sad little drops from murky skies.

Another soggy, muddy boot day

Settles sadly in my foggy mind

Sighing, waking, I turn toward you

And find your sweet smile and bear hug.

Slow, sunshiny gladness stirs my heart

As my happy world turns warm and dry.

And after arising this morning I remembered the words of Ecclesiastes:

To every thing there is a season, and a time to every purpose under the heaven...

...a time to weep, and a time to laugh; a time to mourn, and a time to dance...

Maybe morning time is my "mourning" time (which is thankfully supported by a bear hug), and maybe (hopefully) there will also be time each day to laugh and dance.

In My Distress

Even though I know that "ultimately" all will be well, there is still the initial sting and injury surrounding this latest news. Fortunately, the words to one of the songs we sang on our recent choir trip really rang true, because there is an underlying peace and calm that attends my trust and confidence in the Lord, who pours out his abundance upon me:

In my distress I cried unto the Lord

Oh, Lord in Heaven, help me overcome

that which is hindering me from eternal bliss.

Oh, my Father, bless me daily

With thy Spirit I pray.

I pray that Thou might hear my humble prayer

Like men of old.

Stand still -

Stand still, oh my soul and consider this wonderful work of God

Stand still, oh my soul and consider,

His power, eternal power, shines forth,

Forming so vast a universe as we see.

In my distress I cried unto the Lord

And peace came to my soul.

Amen.

This was written by David Featherstone, our choir director. He also wrote another song that has been a source of inspiration throughout many different trials in my life:

O daughter of the living God

Who dares become a Child of Light.

Woudst thou embark where few have trod,

With faith to bring thee through the night,

O daughter of the living God, our God?

Tenets gathered in thy youth

Compressed by hard experience

And kiln'd in fires of constant truth

Now clear, bright gems of permanence

What gentle strength! What dignity!

Thy countenance doth stir my heart

To seek my own serenity

And keep the world and me apart

While they adorn her crown above

With virtue, purity, and love

Progress Report

Yeah, darn it - there is progress to report. Progress is not good in the world of cancer.

Today's MRI revealed tumor progression. I was always told that it was a matter of "when", not "if", but there has always been hope that I would somehow become a medical oddity (in a good way).

So far it's rather small and in the same general area. Just a blob extending out of the tumor bed area. I'm glad it's not a bunch of grapes sitting on my brain stem or anything like that. But it's the signal that Temodar (the wonder drug) is no longer effective for me.

My options are:

1. Surgery, which is something I'd prefer to avoid as the holiday season approaches (already did that to my family last year). It's also not recommended, given the small size and lack of symptoms.
2. Focused radiation, which is not recommended, because the tumor is larger and has more infiltrating characteristics than what would be ideal for this treatment.
3. Chemotherapy using an experimental combination of Avastin and Carboplatin. This is something my doctor has been using with good results. It's not a cure, and it has its own down-side, but it's something. This is what we are going with.

I start on Tuesday. I travel downtown and hook up to an IV for four hours. Luckily I have a laptop and can maybe get some work done while I sit there. I go back two weeks later for a different infusion (a little shorter) and then repeat every two weeks. I undergo a LOT of monitoring for all of the nasty side effects on my kidneys, liver, stomach, and immune system. I have MRI's every other month, as usual. If this works - great - we keep going. If not, the list of options narrows a little more.

I have been amazed at the calm and peace I have felt as I digest this news. It's not a happy thing. It's disappointing, and it hurts to know that this causes pain for my husband, my parents, and others who just think I'm so darn cute and lovable. I know that this is a big change that will require more adjustment, more logistics to work out, etc. It may affect the things that consume most of my time and energy right now. It puts urgency into the "tie up loose ends" in my life. It causes me to worry about a potential financial impact. It causes me to wonder if (or when) I will start to lose some of my talents and abilities. (Got another Messiah performance on December 17 - gotta keep enough right brain intact!!!) It especially gives me concern about my son, because I want to shield him from this crisis.

And yet - despite all of this - there is calm and peace. There is stuff to think about and work through in my mind, but I feel no despair. I feel sad, but I feel that I am watched over and cared for. My trust in the Lord has not wavered at all. I know that all will be well, whatever is happening now. The prayers of many have given me what I need to endure this. I'm sure that many more prayers will continue on my behalf, and they will continue to help me. Just please pray for my family, too.

Be still, my soul,
thy best, thy Heavenly Friend
through thorny ways leads to a joyful end.

Milestones

Today my husband turned forty. Lucky him - I hope I get to do that someday!

I think in our B.C. life, milestone birthdays were more sobering. Today I just think it's cool that he can be forty and well. It's a goal I hope to achieve.

Tomorrow is a different kind of milestone for me. I will be exactly 10 months post-diagnosis. I still hear whisperings from the old newspaper article that marveled about a man going nine months without tumor recurrence, because "most" glioblastoma patients have their fatal recurrence show up within the first nine months. It gives me the creeps to think that the odds are favorable for an "interesting" result in tomorrow's MRI. I just try to tell myself that REALLY what this means is more good news if things go well tomorrow. And if things don't...well, then - it's not unusual.

To make things extra scary (after all, it is October, and some folks will pay good money to get the willies), I was confirming my appointment time for tomorrow's MRI, and I learned that I have to come in earlier than planned, because this will be a special MRI with spectroscopy and perfusion. After pressing for more information, I learned that this is a way of enhancing my surveillance, and it was ordered by my doctor as a result of what she saw on my August scan. Now that threw me for a loop, because I remembered the August results being very good. However, because the doctor did note shrinkage of the cavity in my head, and some very small enhancement, she ordered the next scan to include these special techniques for distinguishing tumor recurrence from peri-tumoral edema (aka radiation effects that can occur even months or years after radiation treatment) or other weird things. This was described to me in a reassuring way - there was not a concern; this is often done about every six months or so with patients; and even if it were tumor, it was so small; etc. After all, if it were something urgent, they wouldn't have waited two months to do this test. But it's still bad timing, considering those whisperings in my head about that magic nine-month window.

Still - it already is what it is, and tomorrow will just be a matter of finding out and dealing with whatever it is (good or bad). I did learn that such techniques are very accurate in determining the level of tumor infiltration, even more so than the histological grade of the tumor. The little denial bunny inside me (who loved my sister-in-law's dream, in which my diagnosis was found to be wrong) likes to think of this as a way to start raising suspicions about my diagnosis. Of course, I don't want the little denial bunny to jinx things such that tomorrow's result will mean this weekend's emergency craniotomy.

This is part of the rollercoaster ride of life (especially life with cancer). It's the part that makes the stomach sick. It's the part that makes my eyes hurt and my head feel heavy. It's the part that forces me to remember what has carried me through the past ten months.

Hopefully it's also the part that generates a lot of prayer, and hopefully (like many other times) it will be the part where we get to marvel at the amazing power of prayer.

Today we mark a birthday, and we will continue with family celebrations of my husband's milestone throughout the weekend. I told him that I hope I don't ruin his birthday this time, like I ruined the holidays last year. His reply was that I didn't ruin anything last year -- the cancer did. My mom's reply: every day we are breathing is a day to celebrate, no matter what else is going on.

I'm just hoping that with enough faith and prayer, we just might be able to celebrate both my husband's milestone and my own milestone: a remarkable ten months without tumor recurrence.

May All Our Dreams Come True

My sister-in-law told me about a dream she had about me. This goes down in the record books as the best phone conversation of my week.

She said that in her dream, I was five years post-diagnosis, with no tumor recurrence. I had published thirty books, and was on the Today show, talking about how to live life to its fullest. And because of my amazing longevity we decided to have my original pathology slides re-examined. The re-examination revealed that I had been misdiagnosed all along.

May all her dreams come true! The situation she described is the only way that I could be "done" with this cancer business, without being dead. At first I thought, "Hey - I've had that possibility cross my mind before, as though I should seek another opinion. Coincidence or not?" And then I had to remind myself that, OF COURSE, the idea of misdiagnosis would cross my mind. It's the ultimate way of indulging in denial - a natural coping mechanism when facing a serious situation. The reality is that I have already had multiple doctors review my pathology report. There are no questions about the diagnosis.

It's okay, though. Even though misdiagnosis is unlikely, the opportunity for a miracle is still there, and it's not just a denial thing. It's something to hope for, and something to trust in, if it is the Lord's will. Besides, miracles come in many forms. I've experienced many already, and I know that there are more to look forward to.

Whether my sister-in-law's dream comes true or not, I am reminded of the words from the last verse of one of my favorite hymns:

I believe in Christ; he stands supreme!

From him I'll gain my fondest dream;

And while I strive through grief and pain,

His voice is heard: "Ye shall obtain."

I believe in Christ, so come what may,

With him I'll stand in that great day

When on this earth he comes again

To rule among the sons of men.

Banding Together

My husband and I first met in the eighth grade, when we both qualified for the ninth-grade band at Pleasant Grove Junior High School. (In our area, high school started in the tenth grade.) I started playing the clarinet in the fifth grade, and I continued to work on my overbite in junior high school. Meanwhile, my husband played the trumpet, working on his pucker. (I am the grateful benefactor of those efforts.)

We both a-"band"-oned the band in high school, trading our instruments for clogging shoes and choir uniforms. We have long since lost our instruments in the decades that followed. I think we must have swallowed them. My husband, who was able to reach soaring high notes on his trumpet, has a first tenor singing voice, whereas I took on the vocal equivalent of an alto clarinet.

In recent past we have taken great pleasure in resurrecting our clogging shoes and visiting with pals from our school days. Another fit of nostalgia hit us when a local music store chain closed its business and began liquidating band and orchestra instruments. We started to yearn for those old music makers; those instruments that we played together when we had no idea that we would someday fall in love and get married.

We are now the proud owners of a Vito clarinet (the same brand I played in junior high school) and a Blessing cornet (the same brand my husband played). They were used band instruments (just like ours would have been, if we still had them), and we got them for a steal. We brought them home this evening, and after a brief refresher with some fingering charts, it was like getting back on a bicycle. Because both instruments are B-flat instruments, it is easy for us to play duets off the same sheet of music. So like our marriage, our music is easily harmonious.

We are also the proud owners of a half-size violin, another amazingly inexpensive find. Our son saw it and was instantly taken. He loves to try it out, very carefully placing it under his chin and getting used to the feel of the bow as it gently glides across the strings.

Now all we need is an instrument for our daughter, and our family orchestra is complete. Of course, she has super-long fingers, thanks to her seven-foot-tall birthfather; we call them "piano hands." Maybe she can accompany all of us. She already loves plinking away at the keys on our piano. We already have a friend who teaches piano, who saw our daughter's fingers and said, "I get her when she's six!"

Music is good for the brain. "Banding" together is good for the family. Developing and using our talents (no matter how rough they may be) is good for the soul. May the band play on...and on...and on...