Tuesday, January 31, 2006

What Chemo Is Like

Yesterday launched week # 3 of chemotherapy, and tomorrow will launch week # 3 of radiation therapy.

Side effects update:
  • Nausea: None
  • Hair loss: My surgical scar looks a little wider, but so far it's very hideable.
  • Weight: DOWN six pounds, thanks to those clogging shoes and chemo eating rules
  • Fatigue: A little, mostly because the steroids and/or radiation have caused insomnia
  • Pain: Woke up today feeling like I had been kicked in the head (normal side effect), but it was short-lived and tolerable. Didn't even take any pain medication.
  • Etc: Kind of wired at night because of the steroids; I also notice that I stutter a little more than I used to, and sometimes I have some minor short-term memory lapses. Nothing big, though.

People often ask me what the chemotherapy is like. I am really fortunate to have an oral chemotherapy regimen. I take three Temodar (temozolomide) capsules every day for 42 days. Temodar is a great drug for brain tumors, because it can cross the blood-brain barrier and get into where it needs to work. Clinical studies showed effectiveness in increasing patient survival from 12 months (avg for the radiation-only group) to 14 months (avg for the radiation and Temodar group). It also apparently caused breast cancer in mice, but I guess when dealing with something as aggressive as glioblastoma multiforme, any long-term risk of breast cancer seems to be moot.

Anyway, here's how my treatment works, based on the instructions I was given:

1. I have a light dinner in the early evening, with no food afterward, because Temodar should be taken on an empty stomach (lose those midnight snacking calories - yahoo!).
2. 90 minutes later I take anti-nausea medication, if needed (but not needed anymore), and my night-time dose of anti-seizure medication.
3. At least 2 hours after my last meal, I take three Temodar capsules with lots and lots of water.
4. I have to sit upright for at least 30 minutes after taking the Temodar.

Also, because Temodar carries a risk of Pneumocystis carinii pneumonia (especially with patients who are on steroids), I take an antibiotic medication three times a week to help prevent it.

And because chemotherapy will potentially damage bone marrow, I have weekly blood tests to check my white blood cell counts, red blood cell counts, and platelet counts. If any of those drop too low, there may be more action required.

If white cells drop, I am at increased risk for dangerous infections. I may have to suspend chemotherapy for a while. I may have to follow a special neutropenic diet. I may have to stay out of public places, and I may have a major conflict when it comes time to hug my preschool-age son (who may be carrying home any manner of pestilance). I may even have an injection of a special medication to help raise my count.

If my red cells drop, I may be anemic and tired and prone to fainting, etc. I may need a medication or a blood transfusion.

If my platelets drop, my blood won't clot properly, and I am at risk for bleeding. I may need a platelet transfusion.

Another thing I keep in mind is the need to avoid getting heartburn, so that I'm not taking antacid medication anywhere near the time that I should be taking my Temodar. It could potentially affect how the Temodar is absorbed into the body. I also worked with my oncologist and neurologist to determine the best choice of anti-seizure medication, to prevent liver problems that might also interfere with Temodar absorption. It's amazing how many factors figure in to this equation. Thank goodness for expert medical care!

After my 42-day regimen I will take a brief rest and then go on a 5-day/month regimen, with monthly MRI scans to check for progress (a.k.a., the most nervous times I will ever have in my life).

I am grateful that this chemotherapy regimen is the most advanced available, and I am also grateful that it is relatively convenient, compared to having to drive to a hospital or cancer center and spending hours tethered to an I.V. pole. In addition, the treatment has been amazingly tolerable, compared to what is traditionally expected with chemotherapy.

(One more blessing on a very long list.)

Monday, January 30, 2006

"This Is Why I DO Believe"

My husband and I married exactly one week after I graduated from Brigham Young University with a degree in psychology (ironically, the brain was always a fascination for me). It was really important to my parents that I finish school before getting married, so I did. A whole week before getting married.

As much as I loved my major (because of my ironic fascination with the brain), I came to the realization that there wasn't much I could do with a bachelor's degree in psychology, except maybe to apply for graduate school. That was my original goal; law school, actually. But as a newlywed with stars in my eyes, I just really wanted a job that would help pay some of the bills and let Jared start some of his schooling. Most of my job experience during summer breaks was in the medical device industry (where I ultimately grew into my career), but at the time there were no medical device companies hiring nearby. So I took a job at a special education school as a teaching assistant. During college I volunteered there for extra credit in a child psychopathology class, and I kinda liked the place, so I was happy to get the job.

I still remember the children in my class so fondly. They were in the 10-12 year old range, but had cognitive and intellectual capabilities that were similar to preschoolers. Some had cerebral palsy. Some had Down Syndrome. Some had seizure disorders. Some had been badly abused and suffered neurological deficits. Some had other profound disabilities. All of them found a place in my heart. I came to love these children, and I missed them dearly when we moved from Utah to Texas toward the end of my first school year with them.

Anyway...(finally getting to my point)...sometimes we would have volunteers come and help us during lunch and recess time, and I remember one volunteer in particular who sat next to me as we watched the children play on the playground. She watched the children with fascination, and finally said to me, "Kids like this are why my dad doesn't believe in God." I thought it was a very sad commentary. I don't remember if I was gutsy enough to reply out loud to her, but my immediate thought was, "Kids like this are part of why I DO believe in God."

Of course these children were evidence of God. A loving God, in fact. They had perpetual innocence. They gave unconditional love. They carried with them a very tender and humble spirit. They inspired "normal people" like us to serve and care for them, and the more we serve someone, the more we love them. I felt so blessed being in their presence, because it felt like heaven. They bore their physical infirmities with patience and joy, because their temporary tabernacles were no match for their eternally eager spirits. I know that parents do not wish their children to have disabilities, and I know that raising a profoundly disabled child must be a difficult challenge. Even so, I saw great love between these children and their parents. Somehow the Lord can always make something good come out of anything that mortality can throw our way.

I guess there is always someone who might look at adversity and use it as an opportunity to dismiss God. "How can there be a loving God if so much suffering is allowed to happen?" But my reaction to that is the same as it was back in the days of the special education school: this is part of the reason why I DO believe in God. Adversity, by definition, is not something I desire or enjoy. But I've been schooled by occasional experiences of heartbreak, disappointment, and loss; and they have taught me much about life and faith. I guess now I'm supposed to be earning my graduate degree in adversity, and I have never felt closer to my Heavenly Father. These are refining experiences. They are packed with opportunities for goodness to emerge from anything. They are lovingly designed and masterfully executed, even in the midst of disaster. They are still not fun or pleasant or easy. They still hurt - badly, sometimes. But if we free ourselves from bitterness, anger, and despair, the loving face of the Lord can be revealed to us as we increase our reliance on Him.

Sunday, January 29, 2006

Being Brave

Today was a weekend of being brave. Maybe it was because of my newfound optimism. Maybe it's the steroids. Maybe it was a morbid curiosity. But I found myself doing some things that until now seemed way too hard to try.

I started reading some of my cancer books. When I was first diagnosed, I pillaged the online Barnes & Noble store for anything that looked informative about cancer (especially brain tumors). But when the books came in I just couldn't bear to open them. But now I'm brave. I read through a couple. In fact, I have two different books written by glioblastoma patients who survived at least three or four years (which is almost unheard of). I have other books that cover everything from diet to handling treatment side effects to positive mental attitude, etc., etc., etc. It got less creepy for me to start looking through them. I figured I might be able to do it once I was in the midst of treatment, and I was right.

The other thing I did was watch the movie, My Life, starring Michael Keaton and Nicole Kidman. It's the story of a man with terminal cancer, who videotapes himself for the benefit of his unborn son.

I thought the movie was interesting, because I did spend part of yesterday making a video journal, where I told the story of meeting and falling in love with my husband, then the story of adopting our son, and finally the story of adopting our daughter. I also held each child individually and sang "their song" to them while the camera was going.

But anyway, having captured a good beginning of the video journal, my mom and I sat down to watch My Life while my Prince Charming had to run some errands. Part of the movie really hit home, like some of the discussions with the doctors, and all the alternative treatments that well-meaning people keep offering out of the woodwork. And the whole idea of how you tell people and how you plan for the future. But while I expected this to have a "four hankie" quality to it, I didn't cry at all. The movie was really focused on the man's anger and fear and baggage, and how he had to finally let go of that kind of stuff. I couldn't identify with that. I just figured maybe my blog could have helped him! :) But anyway, it had a low sap factor, and I just wasn't relating enough to this character. It was a little creepy when his cancer spread to his brain right before he died. But other than that, I remained fairly emotionless through the movie.

Having survived that moment, I decided to pull out the stops and subject myself, my mom, and my husband (aka Prince Charming) to a viewing of the movie, Charly. Now, my husband and I watched it a couple of years ago, and it's beyond a four-hankie movie. It's more like a bath towel movie. This lovely young couple meets and they teach each other about faith and they marry and have a lovely little boy. And then she is diagnosed with pancreatic cancer that has spread through her body. The treatments don't work, and she ultimately dies. But in that long process, I remember (during my first viewing) that it started out as a small sniffle upon hearing her diagnosis. By the time she is on the floor, begging her son to learn to say, "Mommy", and pleading, "I'm your Mommy - please remember me!" my heart was shredding into pieces. And then by the end of the movie, after the funeral, when her husband finds her note and then takes their son for a ride on the same Ferris Wheel that the couple used to go on a lot, I would be in the throes of shrieking sobs. But that was on my first viewing, long before there was relevance. Today I watched it with a new perspective. Tears welled up at appropriate times, but the Kleenex I kept in my hand throughout the movie remained dry. I was more interested in the details of her treatments & stuff. And I appreciated the messages of faith that permeated the movie. So I was brave.

Sometimes it seems like optimism requires bravery. I read a nice poem about hope in one of my cancer books, and it talks about how there is no such thing as "false hope"; otherwise there would be "false hopelessness", too. That was a good point. I mean, I always want to be submissive to the Lord's will - whatever that is. I believe in making sure I have realistic expectations with everything going on in my life. So sometimes I wonder how optimism fits in with those equations. I think it can fit in. It breeds hope. Hope is the beginning of faith. Faith is things hoped for but not seen. Faith is an amazing catalyst for miracles, and it is also a sustaining strength during times when adversity must remain. Being a little more brave has been a good thing.

The sun is setting on yet another week of treatment. Tomorrow begins week # 3 of chemotherapy, and in a few days I will begin week # 3 of radiation therapy. After that, I will be basically halfway through my treatments, and then it will really be time to get brave. At that point we will begin monthly MRI scans to check for progress, and I'm sure those will be nervous moments, waiting to learn whether the treatments were enough to beat this back, or whether a new threat will loom over me. Learning to be brave now just might come in handy at those times.

Saturday, January 28, 2006

Tickle, Tickle

When I go in for my radiation treatments, I often think about the energy "tickling" parts of my brain. I once read an explanation of why radiation treatment can cause nausea, which said it is because there are certain nausea receptors in the brain that sometimes get tickled by the radiation.

Well, I guess that part of my brain isn't ticklish. My tummy is doing fine during my chemo and radiation treatments. I don't even have to take the anti-nausea medication that I was prescribed, "just in case". But I must say that yesterday I was "tickled" in many other ways, by many simple delights throughout the day, and it was great!

It started in the morning with the realization that (yippee!!) it was my husband's day off. His amazing employer (remember, everyone - buy LOTS of Mary Kay stuff!) has a flex time program, where he works an extra hour a day and has every other Friday off. It's always a delight when that Friday comes up.

Actually, I guess it started a few minutes before then, when I was awakened by our son. He woke up early and came downstairs to our room for cuddles. Hugging on my two favorite guys always tickles my heart strings.

Then, as I got ready for my radiation appointment, I discovered that I had dropped a jeans size. (Hey, we already know miracles are possible, but it's always nice to see one happen!) That was kind of fun! In an earlier post I hoped that lightening up my spirits would make my body follow suit, and it did! Okay, actually, I know it's because I'm eating less and eating better, and I'm pulling on those clogging shoes whenever I can. I didn't expect results like that yet, especially while still on steroids, so when my "you wish" jeans went on without a problem, I was tickled pink! I even looked for a pink shirt to put on, because I remembered thinking how "tickled pink" I felt.

I got a really great tickle after my radiation treatment. As I was saying my goodbyes to the amazing women who perform my treatment, one of them pressed a little surprise into my hand: several packets of Uni-Solve Adhesive Remover Wipes!!!! She had read my blog and had the answer to the "great unanswered question of life"! This is one of many examples of how thoughtful they always are. It was awesome! I was really tickled at that point, and was actually bouncy as we headed out the door. I knew it was going to be a great day.

There were many more: the surprise phone call from my grandmother, other surprise calls and emails from clients, former co-workers, and other friends who have offered many things to help me.

To top off a wonderful day, I enjoyed "date night" with my husband. We went to dinner and attended the temple and had a wonderful time together (as always). As I rested safely in his arms on my way to the best night's sleep that I have had in a while, I remembered with a smile that long, long ago, in the early days of our friendship, back in those junior and senior high school days before we started dating, we had a little flirtatious thing going on at the drinking fountain at school, where we would sneak up and tickle each other.

Thursday, January 26, 2006

Wheat and Tares and Green Bananas

In Matthew chapter 13 we read the parable of the wheat and the tares. A man planted wheat in his fields, but while he slept, his enemy sowed tares among the wheat. "Tares" refers to darnel grass, a poisonous weed, which, until it comes into ear, is similar in appearance to wheat. So the man awakens to a dilemma, because they can't weed out the tares without also uprooting the wheat.

Anyway, as I was pondering and praying once again for the Lord to differentiate the cancer cells from the healthy cells, the thought came to mind: "Like the wheat and the tares." I guess the man in the parable had what we could call "field cancer." It's a similar dilemma.

As the first "zzzzzps" of radiation treatment began today, another thought came to my mind: "The tares are being burned". I was hopeful and prayerful that this meant that somehow the "tares" were being separated from the "wheat" in my brain, and the tares were being gathered up and burned. It was a good thing.

In fact, today was probably my first, "You know, I just might make it at least a few more years!" kind of day. I have always known that all things are possible with God, but I have also understood that all things are subject to the will of God. Sure, I can have a miraculous recovery, even of this most horrific and deadly cancer - IF it is God's will. If (as my niece put it) I am supposed to go and lead the angel choir for the Second Coming, then I will need to accept a different outcome - still trusting, however, in the goodness of God. So there is faith either way this goes, but the uncertainty of outcome often leaves me with the "will I need any green bananas" question! Today, though, was an optomistic day. It was a green bananas kind of day. A leap of faith onto the fragile path of anticipation. So far nothing broke.

Wednesday, January 25, 2006

The Great, Unanswered Question of Life

What is the great, unanswered question of life?

"Where did I come from?" - No, I know the answer to that one.
"What is the purpose of life?" - Got that one, too!
"Why me?" - Read yesterday's blog post for my answer!

Those questions are easy. What I REALLY want to know is:

"What will finally clean the sticky residue from my bandages????"

I've tried soap, alcohol, acetone (from nail polish remover), and a myriad of other household solvents. And yet the black sticky outline remains as evidence of having been taped back together after an IV or needle stick. The bandage residue from the I.V.'s and etc. during my surgery (SIX WEEKS AGO) finally surrendered and wore off, but I still carry the badge of honor from this week's blood test.

Maybe some guru on a mountain, or some medical version of Heloise (the hints lady) will tell me the secret for removing adhesive residue. And then they will probably tell me not to use it, though, because it might cause brain cancer.

Tuesday, January 24, 2006

Not Fair?

Sometimes when bad things happen, people react with a question and a protest. The question is often, "Why me?", and the protest is often, "This is SO unfair!"

I never asked, "Why me?", because I already know the answer. We are all subject to opposition and adversity. These experiences help us fully appreciate contrasting happiness and blessings. These experiences are refining opportunities. These experiences create humility and compassion within ourselves. These experiences test and try our faith. Why me? Because it's a necessary part of life, and I'm alive (knock wood).

I obviously don't like having cancer. I wouldn't wish it on anyone. It's pretty vile. But I never complain about it being "unfair". I mean, sure, I hear an occasional comment from someone who laments the unfairness of someone like me (as in, someone obviously so cute and lovable and talented and clearly very humble) having to go through this nightmare, and how these two adorable children (also cute and lovable, etc.) and this great husband (VERY cute and lovable and talented and beyond) shouldn't have to suffer my loss. Because, obviously losing someone as cute and lovable and talented and clearly very humble would be a huge loss. Not fair!

Well, first of all, bad things don't only happen to evil, ugly villains. “All things come alike unto all: there is one event to the righteous, and to the wicked; to the good and to the clean, and to the unclean;…as is the good, so is the sinner…there is one event unto all” (Ecclesiastes 9:2-3). Even the cute and lovable among us face adversity, and that isn't necessarily "unfair". Just because someone didn't cause their own problem doesn't mean that they are unfairly being subjected to that problem.

Also, any decisions about the desirability of "fairness" where God is concerned requires me to closely consider the very core of my beliefs about life and how it works. Quite frankly, the more I think about it, the less I want to be ruled strictly by the law of "fairness". The law of fairness is double-edged. It gives no room for mercy. If everything always had to be "fair", it would be strictly a program of justice, and that would mean any failings we have as human beings would condemn us appropriately (or "fairly"). But as Christians, we know that mercy, also known as grace, can satisfy the demands of justice. It's really super important to me, because as cute and lovable and talented and clearly very humble as I am, I am no different from anyone else in falling short of perfection. I don't want the "fair" condemnation for my shortcomings. I want the mercy and grace that is available to us. So in the end, I'm kind of glad that things aren't always supposed to be strictly fair.

Cancer. Not fun? Not easy? Not comfortable? Not desirable? Yeah, it's really gross and horrid.

But not fair? Don't know, don't agree, & don't care. Fairness is not my goal. Life is my goal.

Monday, January 23, 2006

Doubt Not, Fear Not

Day four of radiation treatments; starting week two of chemo.

Today's mental image during radiation: an angel cradling my head in her arms, as she used her fingers on my head to guide the treatment. Other angels were standing nearby to help where needed.

Side effects update:
1. Nausea - none
2. Fatigue - just the usual
3. Hair - still there, with a tiny little spot (smaller than a dime) near my surgical scar that looks like a little bit of mange. So far it's very hideable.
4. Headaches and/or pain - very rare, and nothing that would even warrant a Tylenol or Advil. I've been off post-surgical pain medication for weeks now. (Yay!)
5. Mouth sores - none
6. Weird eye thing - same as before*

*I talked with my radiation oncologist about my eye today, and he said it sounded consistent with swelling and pressure, rather than a radiation burn. He offered to increase my steroid dosage to try and alleviate the feeling, but I said NO THANKS! I'd rather have eye irritation than transfer more swelling from my head to my rear. It was a reassuring visit, at least. As always, the whole cancer center is an incredible environment. Everyone who works there is amazing. I think the positive energy that they exude is part of their treatment plan.

Speaking of positive energy, I had an amazing experience this morning. After I posted about "Jesus, Take the Wheel", I started getting ready to leave for my radiation appointment. As I sat there, putting on makeup and thinking through the words, I felt a sudden WHOOSH through my body, as though warm water were being poured on me. It was an overwhelming feeling of comfort and peace, and an unmistakable feeling of my Heavenly Father's love for me. He knows me and loves me and is watching over me through this process. That feeling was very strong, and what was most amazing about it was that in the presence of this great feeling of love, there was no room for fear. Both feelings could not co-exist. For that moment, it really didn't matter to me what would happen to me. I felt assured that things would be okay, no matter what. I hope that I can somehow harness that feeling and keep it with me always.

It reminded me of 1 John 4:18: "There is no fear in love, but perfect love casteth out fear..." It also reminded me of something a friend shared with me from Doctrine & Covenants 6:36: "Look unto me in every thought; doubt not, fear not."

Today was just a really good day (or at least the really-est good day you can have with stage 4 cancer). As I have acknowledged from time to time in this blog, many recent incidents have given me moments of welcome relief. I hope they continue to snowball, and as I said in an earlier post, maybe these moments will feed more hope and faith, sufficient to fuel many miracles.

As a family, we celebrated with a joyful evening together. We had our typical family home evening ritual, complete with a lesson, music, and prayer. And we also had some fun playing music and singing and dancing. My son requested "Two Little Shoes" (my song for him). We decided to make another song for him from his daddy, and we selected John Lennon's "Beautiful Boy", which is on the Mr. Holland's Opus soundtrack. We pulled out the CD and sang that song over and over again to his delight. We enjoyed some other stuff on that CD as well. I sang along to "Someone to Watch Over Me", just because my husband always loves it when I sing that one. And then my son and I sang and danced to "One, Two, Three", before pulling my husband in for a repeat performance with one-two-three members of our family. Later I pulled out a new CD from the Choir at Kings College, performing two separate Requiem's by both Faure and Durufle, and I sang along to both versions of "Pie Jesu". It was less than a complete diva experience, because I am NOT a soprano, but no one threw tomatoes at me! And finally, we put on a Lionel Ritchie CD and my husband and I slow danced to "Hello" (our song while dating). These were moments that I wish could be frozen in time.

Meanwhile, as the joyful, hopeful moments might still give way at times to the harshness of being in the "refiner's fire", I have made it a matter of prayer and contemplation to make the most use of this experience. I understand the whole "refiner's fire" concept. We are put on this earth to be tried and tested, and to gain experience. I've started to notice some refining going on, which actually makes me recognize other areas where I need refining. So something good is coming out of this process. It would be really nice to make the most use of these refining and learning experiences, in the hopes that by doing so, I might qualify for a miraculous deliverance.

Meanwhile, the future remains unknown. Countless, hideous possibilities remain, as glioblastoma is not a pretty way to die. Maybe a miracle will deliver me from those possibilities. Maybe there is a higher purpose that calls me home through this difficult path. But there is Someone watching over me, who made me and loves me and does whatever is needful. I am sure about that. And feeling the reality of that love drives all fear away.

Doubt not, fear not.

Jesus, Take the Wheel

My mom called this morning to let me know that countrywestern music has redeemed itself a little bit. (There is an earlier post in this blog about why I hate countrywestern music!) She told me about a new song called, "Jesus, Take the Wheel", performed by Carrie Underwood.

Now, I like Carrie Underwood, because I am a HUGE fan of the TV Show, "American Idol". She was the last season's winner (although I actually voted for Bo Bice, the runner up). But she was a worthy winner. Her voice is really good. And I thought the title was kind of interesting, since I am under doctor's orders not to drive, so someone has to literally take the wheel for me every day. But it's a song about someone who has a dangerous roadway situation, and who also later decides to make her life right, and both times she asks Jesus to "take the wheel". The idea of putting our lives and our problems in the Lord's hands is the point of this song, which is something I believe in strongly. Carie sings (and now my heart sings along):

Jesus, take the wheel!
Take it from my hands 'cause I can't do this all on my own
I'm letting go, so give me one more chance to save me from this road I'm on
Jesus, take the wheel!

(Thanks, Mom, for the song pick!)

Sunday, January 22, 2006

Doctor, My Eye

There's an old Jackson Browne song called, "Doctor, My Eyes". It keeps going through my head every so often, because I know that after tomorrow's radiation appointment I will have my weekly sit-down with the radiation oncologist, where I will be talking to him about my eye.

The feeling in my right eye reminds me so much of when I have briefly looked at something very bright, leaving my eyes feeling temporarily "burned". But this feeling lingers all the time now. In the outside corner of my right eye, I feel some pressure and kind of a sunburned feeling. And there is a constant ache, like the back of my eye is burned. Fortunately, there is no change in my vision. But this is how things are after three days of radiation. Rays zipping in a precise pattern through my head, including through (or very close to) my eye for three days. This will be a six-week process. I wonder if the continued exposure will just cause me to ache more, of if there is actual damage being done to my eye. It's on the "questions list" that I always bring whenever I meet with a doctor.

Of course, if it is causing damage, the answer shouldn't be to change how they are delivering radiation. The protocol was so carefully developed to be as precise as possible in delivering the optimum dose to the target area while minimizing damage to healthy brain tissue. And I guess, if it means that some of it has to come through my eye, I'd rather have an eye problem than a "can't treat the cancer" problem.

Blindness was listed as a potential risk of this process. Blindness in one eye is at least better than blindness in two eyes. My youngest brother is legally blind in one eye, so he knows what that is like. And he is still a gifted artist and a safe driver and a college student, and he looks and functions just fine. I just hope I don't end up with a scary eye that looks burned. I don't want my children to be afraid of how I look. And hopefully this burned, achy feeling in my eye will subside over time. Hope hope hope. Hope and pray. As long as the radiation still does what it has to do.

"Doctor, my eyes tell me what is wrong
Was I unwise to leave them open for so long?"
(Jackson Browne)

Losing Weight

"As a man thinketh, so is he..." (Proverbs 23:7)

So...does that mean if I can lighten my mood, my body might follow? (Hope springs eternal!)

Yesterday started with that same old heavy ache in my heart as I awakened. It's so awful. But as the day progressed, and as I continued my quest to figure out how to endure this well and "be of good cheer", I found the day getting easier.

Last night I wasn't plagued by my typical insomnia. Even when a storm woke us up with some thunder, I was able to fall back asleep. That was a gift. And this morning when I awoke, there was no heavy heartache. I felt considerably lighter. (Let's hope my thighs follow suit.)

Of course, today I continued in a positive pattern, enjoying my "music therapy" with the Primary children, and launching a new season of church choir practice. It felt really good.

It's not like I'm bouncy about the whole cancer thing, but today is a much lighter, easier day. Not as fearful. Not as dreadful. Not as soggy with tears that can't wait to fall. A day that is easier to accept hope. And maybe that will feed more hope and more faith, sufficient to work the miracle that I desperately need. Maybe I will even buy some green bananas next week!

Our family also lost a little bit of financial weight by streamlining our vehicle situation. Since I can't drive, there was really no sense in maintaining two cars. So my husband managed to trade in both cars for a new, seven-passenger Ford Explorer, which will better meet our needs. And the best thing is that after I agreed to the concept, he handled all the details (because sometimes details like that make me nuts right now). I was excited about the new car, but as he brought it home and I sat in it for the first time, I briefly wondered if it would be my last car. It was kind of creepy to think about. So I tried not to think about it. I did get a chuckle when my husband suggested some possible vanity license plates, including: 2MR GRL (Tumor Girl). I vetoed that one, but it was a lighthearted moment. I think we'll try something like 4EVR FAM (Forever Family).

We went for an inaugural family ride last night and blasted the music of Heart (such a cool girl band that can really rock), because it can sometimes be a good "scream" outlet. It was just fun. But I know that if I end up being called to lead the choir for the second coming (my niece's theory, in case I die), we would not be doing any selections from Heart. That's okay. Hopefully I won't need a scream outlet there. And I suppose getting to bask in the works of Handel and Brahms would be a really fine thing. It's "lighter" music. And we're trying to lighten up a lot right now.

Friday, January 20, 2006

Duellin' Banjos!!!!

Best thing of the day:

My husband and I pulled out our CD, put on our clogging shoes, and tried to resurrect our smokin' routine to Duellin' Banjos. My body is SOOOOOO worn out, but I took it easy today and caught a few winks of nap, and I was motivated by the need to exercise. Clog dancing is pretty strenuous, but I figured taking it in small doses would be okay. And it was great! Long ago, we fell in love dancing together on the same team in high school. Somewhere in a box in our attic are the trophies from our days of "buck and wing" duet competitions. Dancing is a celebration of life, and this was a celebration of one of the best times of my life. Falling in love with my best friend, my soul mate. The man who would marry me and return my love tenfold. The man who would be a beloved father and example to our children.

We remembered ALMOST all of the routine. Certainly enough to have some fun. Enough to wake up our daughter, who was sleeping in the next room. But I'm sure we'll try it again sometime.

Having a mortal body has its pros and cons - kind of like it's own "duellin' banjos". On the one hand, our bodies are subject to everything from ugly toes to headaches to acne to broken bones, cellulite, and lots of other ailments, including illnesses like cancer and (ultimately) death. On the other hand, having a body has its fun moments. We can laugh and cry and hug and kiss. We can play and jump and tickle. We can roll down hills. We can ride a bike. We can sing. We can DANCE. We can say, "I love you". Heck, we can even blog! And more!

Bitter and sweet, duelling together. Fortunately, we have faith in the One who renders the bitter parts temporary. Someday we will all be free from the bitter, including death. Someday we will have the fulness of joy that comes from reuniting our eager spirits with a body that is incorruptible. As Job said, "I know that my Redeemer liveth, and that he shall stand at the latter day upon the earth. And though worms destroy this body, yet in my flesh shall I see God."

Today I mourned a little for the bitter parts of this mortal experience. But then I put on my shoes and celebrated the life and the love that this very imperfect body has allowed me to enjoy.

Two Little Shoes

While I'm thinking and blogging about songs, I couldn't resist sharing the one that is my special song for my little Jacob. It's a dear little song written by Deanna Edwards, entitled, "Two Little Shoes". In my years of longing for a baby boy, I envisioned myself singing it someday if we ever got so lucky (and we finally did). I remember the sweet smile on Jacob's face the first time I sang it to him during our "tuck in" time:

They are all scuffed and worn from adventures that only a child understands;
The laces, once broken, are mended; tied in knots by a boy's tiny hands.
When his two chubby arms come around me in a hug I can never refuse,
I think all the wonders of Heaven are tucked in these two little shoes.

And each night I kneel; my heart sings a prayer:
"Thanks, Dear God, for one little boy, and two little shoes on the stair."

When I think of the harsh words I've spoken when those shoes scattered mud on the floor,
I know that my heart would be broken if someday they weren't there anymore.
I see them at night, where you left them on your way to a dream coming true.
My heart fills with love overflowing when I look at those two little shoes.

And each night I kneel; my heart sings a prayer:
"Thanks, Dear God, for one little boy, and two little shoes on the stair."

...Thanks, Dear God, for one little boy (named Jacob...and his daddy, and his baby sister)...


Day three of radiation; day five of chemo.

Side effects update:
  • Nausea: A little at first this morning, but not bad. No "praying to the porcelain god" or anything like that.
  • Hair: Still there; no mange yet!
  • Fatigue: Just the usual, plus some extra from having insomnia
  • Etc: I feel like I have a mild sunburn on my right temple, and behind one of my eyes it feels like I stared into the sun too long or something. But in general, so far, so good - things are pretty tolerable. (Except the cancer itself, of course!)

Today the kind ladies at the cancer center remembered that "Hello" was my favorite Lionel Ritchie song, so they had it playing when I arrived for my radiation appointment. I loved being taken back to those early days of falling in love with my husband, as this was "our" song. And then I started to really ponder the words. They always seem relevant to the time when I was falling in love, but today they had a haunting relevance to the "if and when..." Wherever this process takes me, I know I will be thinking about, and "singing" these words in my mind to my husband until we are together again:

I've been alone with you inside my mind;

And in my dreams I've kissed your lips a thousand times.

I sometimes see you pass outside my door -- Hello, is it me you're looking for?

I can see it in your eyes; I can see it in your smile.

You're all I've ever wanted; my arms are open wide;

'Cause you know just what to say, and you know just what to do

And I want to tell you so much, I love you.

I long to see the sunlight in your hair,

And tell you time and time again, how much I care.

Sometimes I feel my heart will overflow -- Hello? I've just got to let you know...

'Cause I wonder where you are, and I wonder what you do;

Are you somewhere feeling lonely, or is someone loving you?

Tell me how to win your heart, for I haven't got a clue.

But let me start by saying...I love you.

Future Jacob

One thing about my "brain on steroids" time again, is that I am a terrible insomniac. As my husband observed earlier, my brain is running a million times faster than my body. As much as my body is desperate for much-needed sleep, sometimes my thoughts will not quiet down. So rather than lie in bed, awake, with that pit in my stomach and ache in my heart, I thought I would go out for a morning blog! (If I weren't so doggone tired, I'd be eager for a morning jog, too, since it's also "body on steroids" time!)

Yesterday was day two of radiation treatment. I always like the kind, comforting, and positive atmosphere at the cancer center. The people who work there are wonderful. It helps me feel positive and constructive as I sink into this routine every weekday.

The music wafting in the treatment room yesterday featured Lionel Ritchie. In addition to picturing my little angels helping me, I found myself remembering many happy times that were associated with the songs I heard. My high school and college years. Hanging out with friends. Dating my husband. I kept waiting for the song, "Hello," because that was OUR song, but they didn't get to that one before I was finished. But it was nice to be transported back to those memories, because: 1) I'm glad to know that I still have memories, and 2) it's one more reminder that I have had a great life. No matter what this process leads to, I have a life I can be grateful for. Of course, that's why I want more of it! But it was comforting to reflect on happy times.

I guess I was having a Dickens of a moment, because the "ghost of good times past" went away, and the "ghost of Jacob future" arrived. It was the most amazing image in my mind's eye. As the radiation dose is delivered, there is a sensation of flashing light and little "poofing" sounds, kind of like a camera taking lots of pictures (pictures that will make your head feel sunburned, but that's something to deal with later). And so suddenly in my mind's eye they were cameras going off. The subject of the photographers was a very handsome young man in a tuxedo on his wedding day. He was standing with his bride, but the bride's image was too obscure for me to study. However, I had a clear view of the young man as he stood there with the most handsome, confident, joyful smile on his face. The radiant countenance of a good, honorable, happy young man. This man was my Jacob. My beloved son, who is not yet five years old. My main reason for wanting a miracle. It was amazing how my mind was able to construct a "future Jacob" image that was so recognizable. And it was the most beautiful image I have ever seen in my head.

I decided that his little sister, Emma, should also be in the picture, so I started trying to paint her in there, maybe as a bridesmaid or something. She would probably be as tall as he is. (Her birthfather is seven feet tall, so we expect big things from her!) I wished I saw myself in there, next to my husband, as parents of the groom, but obviously the whole wedding party was not shown.

So I wondered, would this be something I would witness in person, or from heaven? I hope in person. I wondered if this would be something where people would comment, "Oh, look at that handsome Jacob! Remember, he was that sweet little boy who lost his mommy. But now look how well he is doing!" I hope that instead, it would be a moment of celebrating the miracle that we are praying and pleading for, if I can live to guide him to that moment.

Finally, I realized that if this image were at all foretelling, it was good news. It would either be something I will witness firsthand, or it is a comforting assurance that regardless of what happens to me, my Jacob will be okay. That beautiful, confident smile on his face is what I want most.

Wednesday, January 18, 2006

It Was a Blast

Today was my first day of radiation therapy, and it was a blast. A blast for the glioBLASToma, or at least I hope so.

The cancer center is a very comforting and helpful place, and the radiation procedure was pretty easy. I just lied down with the head mask on and relaxed for 20 minutes or so while some sounds and flashes signal the delivery of rays from the revolutionary Novalis machine. It didn't hurt. It may hurt later, because headache is a possible side effect, especially in the mornings afterward. But as I understand it, some of the common side effects may show up as more of a cumulative effect of multiple treatments. So for today it was fine, but over time there may be a different story.

I read a story about someone who used some "mind-over-matter" visual techniques to help cope with the radiation treatment. I think hers was something like a Space Invaders game or an eraser removing the tumor cells. I used angels.

One of the difficulties of cancer treatment is that it is hard to differentiate between cancer cells and good cells (as someone described to me, like having vanilla pudding mixed in with banana pudding and trying to separate them). But I know that God knows which cells are which. I prayed for His guiding hand to use the treatments as a tool to target the cancer cells, while protecting the healthy cells. And to tell the ministering angels how to find the cancer cells and rebuke them.

So anyway, as the radiation machine was flashing and whirring, I pictured little ministering angels in my head, grabbing the incoming rays and using them to zap the cancer cells, while other angels stood guard over the good cells. And then a thought came to me: "No, it's not like that. It's more like this." Then the angels began motioning to the rays, guiding them where to go, and where not to go. Kind of like a Jedi trick or something. But either way, it was fun to imagine.

The only bad thing was one of the songs I heard in the room while the treatment was going on. They offered to turn off the music so I could have a quiet room, and they offered to let me bring a CD next time if I want to hear anything specific, but today I figured the soft contemporary music they already had playing would be fine. UNTIL I started hearing the singer wail, "I can't live...if living is without you..." I shuddered each time they said, "I can't live..." Not something a cancer patient wants to hear! However, as I relayed this to my husband later in the day, he said, "Hey, maybe that's what the cancer cells are singing!" (Good idea - let's hope so!)

Because radiation can cause swelling in the brain, I was prescribed a regimen of (uh-oh)... STEROIDS! I read about someone who gained 50 pounds during her first few weeks on steroids during radiation treatment. She joked about how the steroids reduce swelling in the brain by making the rest of the body swell up! Fortunately I didn't gain 50 pounds last time, but I gained enough to make me angry once again at the body that betrayed me with its spontaneous and rapid replication of abnormal cells. Between my treadmill and our new Dance Dance Revolution game on our Playstation and the fact that I can't eat anything after dinner (because chemo has to be taken on an empty stomach at night), I am hoping that I can stave off as much "growth" as possible. After all, when I go in for MRI monitoring, I'd like to still be able to fit in the tube!

Part of me is happy about some of the aspects of being "brain on steroids" girl again. It will do wonders for my productivity, which should delight my clients. Part of me dreads the "brain off steroids" feeling at the end of the six week process. The depressing effect from last time was tough, but thankfully temporary.

Now that I am in my first week of combined chemo and radiation treatment, people are anxious to know how I am tolerating it. So far, no apparent side effects. I know that some of the possible effects may be awful, but I am taking it a day at a time, and for today - I'm okay (just a little cancery!)

Monday, January 16, 2006

...and lift off

No aborted launch today. I took my chemotherapy pills. I decided that even though I felt a little icky, I was probably okay enough to proceed. I am on chemo. I am a cancer patient. (Well, DUH - I've been a cancer patient for over a month now, but another reality sinks in...)

Part of me wants to put on a baseball cap and look like one of those cute little cancer kids. Part of me is a little surprised at how simple this process was. Took some pills according to a schedule. There was (of course) no magic thundering in my body or anything like that. Nothing really scary. No drama. Just swallowed the pills. I'm on chemo. The first of 42 days. It could help prolong my life, at least longer than it would be without treatment. It could maybe help bring about the miracle (sometimes God works through natural means or through the inspired work of other people). And on the other hand, based on the informed consent information, it could kill me. But hopefully not that last one.

No side effects yet, but, hey - it's been less than an hour since I took the pills! I just hope and pray that this chemo will be as effective as possible while preserving the healthy functions of my body.


Just to add a little suspense to the moment...

I started feeling the seasonal allergies in full force yesterday, and then today I woke up feeling congested and icky. Normally, at this time of year, when the winter cold snap surrenders to a slight warming trend, something blooms and gives me a good allergy attack. It often progresses to a sinus infection or a winter cold. So as I woke up this morning on my first day of chemo, I was very concerned.

My always-responsive oncologist nurse practitioner said that if I felt really bad, I could postpone for a little while (as long as I start this week). The Temodar (chemo drug) is taken at night, so I am still trying to decide whether to go for it or postpone tonight (and I have to decide soon). I've been loading up on fluids to try and help me get better. Infection prevention is always a high priority, and when my son coughed this evening, I really started to worry. So if you are one of the many who has prayed for me (thank you thank you), I wouldn't mind if another one was offered up to help me quickly recover so that I can safely endure the chemo.

Another, happier development is that my radiation treatment has finally been scheduled. I start on Wednesday and go every weekday for six weeks. It's another reason to start the Temodar soon.

Sunday, January 15, 2006

'Twas the Night Before Treatment

Twas the night before treatment, and, lying in bed,

A flurry of thoughts seemed to race through my head.

The Temodar pills were all lined up with care,

In hopes that remission soon would be there.

The oncologists set me all up with their plans,

And informed consent forms sent home in my hands.

The long lists were grim, naming known side effects;

And risks of the perils that just might come next:

Now, hair loss! Now, skin rash, fatigue, and mouth sores!

On bone marrow damage! Pneumonia, and more!

As this cancer is fast and destructive and mean;

As we meet it with chemo and radiation machine;

With three daily pills until day forty-two,

And a zap of my head for five days each week, too;

To the top of my head, to those cancer cells small --

May they dash away, die away, go away all!

I stood up with a shopping bag flung on my back,

And I looked like a peddler just opening my pack.

A mouth rinse for sores! Anti-nausea pills!

And other such helps for the side effects’ ills!

I passed by the mirror to head toward a shelf,

And I groaned when I saw it, in spite of myself.

I had a round face and a big old round belly,

Thanks to steroids that turn my body into jelly.

With a wink of his eye and the twist of his head,

My husband awoke to relieve all my dread;

And he whispered so softly as he turned out the light,

“It’s okay, dear, I love you. So sleep well tonight.”

He Shall Feed His Flock/Come Unto Him

One of the potential risks discussed with me in my pre-op "informed consent" process was the possible loss of musical ability. Music is so important to me. Even though I have a hard time emotionally with some music, because of its association with various memories and events, I still LOVE LOVE LOVE LOVE to sing.

Today my husband and I sang together in church. We chose a selection from Handel's Messiah. I sang the "He Shall Feed His Flock" part, and my husband did the "Come Unto Him" part (as a tenor instead of a soprano). It was a wonderful celebration of the continuation of my ability to sing. My husband is an AMAZING tenor, and his solo was incredible. I was happy to have been able to throw in all the "diva" ornamentation that I like to use on this song. I also thought the words were very appropriate for us:

He shall feed his flock like a shepherd
And he shall gather the lambs with his arm
And carry them in his bosom
And gently lead those that are with young
(I kept thinking of myself as someone who is praying to live long enough to raise her "young")

Come unto him, all ye that labor
Come unto him, that are heavy laden, and he will give you rest
Take his yoke upon you and learn of him
For he is meek and lowly of heart, and ye shall find rest unto your souls.
(We have been heavy laden and are in great need of rest)

Our musical number followed a very relevant talk about faith amidst adversity. The speaker said so many things that were very useful to our situation. Among these, he talked about how everyone has a moment where they hit the giant "wall of faith". This is definitely our giant wall of faith right now. The test is whether we rely on the arm of flesh, or whether we put our trust in the Lord. I felt a spiritual feast throughout the meeting. It felt great. And then I had my "music therapy" with the primary children again. The whole thing lightened my heart.

Tomorrow I begin chemotherapy. Sometime this week I will start radiation. I have that "first day of school tomorrow" kind of jittery feeling right now. I'm so glad I was able to spend so many hours this morning in a spiritual feast to help me through this naturally anxious time.

Saturday, January 14, 2006

Terrible But Bearable

As I was commiserating with my mom on the phone the other day, I made the comment that this situation was "just terrible." And Mom, in her infinite wisdom, said, "Yes, it's terrible - but bearable."

It reminded me of a scripture that I recently read: "And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours, and the riches of eternity are yours. And he who receiveth all things with thankfulness shall be made glorious, and the things of this earth shall be added unto him, even an hundred fold, yea, more." (Doctrine & Covenants 78:18-19) In other words, the Lord helps make the terrible much more bearable.

The past two days were much more bearable. The circumstances have not changed. I still have this very bad cancer. I am preparing to start chemo and radiation therapy soon. It's an anxious thing to consider. Yet, the ache in my heart has been relieved considerably, and yesterday was a day that was full of small delights and more "tender mercies". (I explained about "tender mercies" in an earlier post.)

One that was especially nice was FINALLY finding my wedding ring. I have the best wedding ring. It's welded to my engagement ring, which is also awesome. I remember when my husband and I were engaged and we shopped together for a ring. We had the engagement ring and weddding ring custom made and they are just so beautiful together. We welded them together after the wedding, so now it is one big chunky ring. One of many delights from my husband. And then I lost it. Could not find it anywhere. I'm terrible about taking it off and leaving it on a ledge or bookshelf or somewhere convenient. I checked all the places where it normally "parks" while I do things that are not ring-compatible (dishes, cooking, changing diapers - whatever), and it was nowhere to be found. The last time I remembered wearing it was at the radiation oncologist's office, where I had to remove some jewelry for the x-ray simulation procedure that they did. I put the jewelry in my purse, and then the next day, at another appointment, my purse fell over and the contents spilled out. Even though I gathered everything back up again, I wondered if my ring might have fallen out and rolled under something. They checked. It hadn't.

For a couple of days I have worn my "death ring". Long, long ago, when I thought death was in the far distance, I bought a simple gold band. It is sometimes worn at times when a big diamond ring was not practical, and I also told my husband that it was what I should be buried in, if and when I ever died. The reason is that I ultimately want my son to have my wonderful wedding/engagement ring for use when he finds his own bride, and even if I were living I would probably give it to him. But then, having surrendered that treasured ring, I didn't want to look "unmarried" in the casket, so I thought a simple gold band would be the appropriate symbol of that relationship that has meant everything to me. So I wore that gold band in the absence of my lost ring, feeling a little shudder about wearing the "death ring" at a time when I want more than anything to live. (Kind of like the red shirt thing that I posted about before.)

As I said my morning prayers yesterday, I sheepishly asked for help in finding my ring. I know it's just a "thing". In the eternal scheme of things, it is insignificant. A material posession. We leave all of these things behind when we go for good. I understand that. But having said that, I explained that it would be one less worry; one less stress at a time when stress needs to be relieved. One more tender mercy to give me even a small measure of relief.

Later, as I was talking with my mom on the phone about tender mercies, I decided to look once again at my bedroom bookshelf, which is one of the places I typically set my ring, my watch, and other commonly worn jewelry when I remove them. Then I thought I should look behind the bookshelf, in case the ring may have somehow fallen there. (One time I did find my ring behind a piece of furniture that I set it on.) Well, in order to look behind the bookshelf I had to move the small ficus tree that was nestled next to the bookshelf. (One that is small enough for me to lift right now.) Still talking on the phone, I picked up the ficus with my other hand, and - VOILA! My ring! It had fallen off the shelf and rolled very close to the base of the tree. Chalk up another tender mercy. A small delight to help me feel happy at an otherwise unhappy time.

The day was full of delights. My husband had the day off. He took care of many errands for me. He even took me SHOPPING! (My favorite extracurricular activity!) And we landed in a store that was having an amazing sale, and I found the exact type of skirt I had been trying in vain to find - and it was marked all the way down to six dollars and change. We had many wonderful times together (as we always do when we're together). I remarked to him that I am just feeling all these wonderful delights, and it really has made my day kind of fun! This was the most cheerful I'd been since my diagnosis. It was a wonderful thing. For a moment, at least, the terrible was definitely bearable.

This morning I felt a little bit of the heartache again. Not as much as before, but just a little. And then after my prayers I was reminded of the hymn, "Be Still, My Soul":

Be still, my soul; the Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In every change he faithful will remain.
Be still, my soul; thy best, thy heavenly Friend
Through thorny ways leads to a joyful end.

Be still, my soul; thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

Be still, my soul, the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul, when change and tears are past,
All safe and blessed we shall meet at last.

Thursday, January 12, 2006

Things To Be Thankful For Today

I usually sleep soundly and peacefully through the night (something to be thankful for), but when I wake up in the morning there is a renewed realization that, "Oh, no - I have cancer." And the ache in my heart feels very heavy. I pick up this load and carry it throughout my day. Such was the case again this morning. Shortly after rising I read an article in a church magazine entitled, "Be Of Good Cheer". I desired more than anything to follow that admonition, and prayed for help to do that. I wanted so much to be relieved of that heavy grief. I was grateful, I was faithful, I was trusting in the Lord - but I was still grieving, and I needed comfort and peace from that grief. As the day went on I realized that I was feeling some relief. I wasn't exactly cheerful, but the heavy ache in my heart was lightened considerably. (Something to be thankful for.)

I had an appointment for an MRI and C-T scan today as part of the preparations for my radiation treatment. They have software that combines these images into a 3-D model to guide the treatment process. It's pretty cool. (STBTF.) I was able to make the appointment thanks to the help of my husband's parents, who are visiting from Maryland, and who provided childcare and driving assistance. (STBTF.) Another friend made sure my son had a ride to and from his speech class. (STBTF.) I endured the procedures, because they were smooth and seemed to go quickly. (STBTF.) And despite what I discussed in my THUNK post, I still fit in the MRI tube just fine! (STBTF.)

After my appointment we drove to the pharmacy to pick up the chemo medication, nervous about what the verdict was going to be regarding the cost. We pulled into the drive-through, and the pharmacist handed us the bag and said that our copay was $55. I was SO relieved! (STdefinitelyBTF!) But then there was a drawback. "The insurance only covers a 20-day supply." I am supposed to take this for 42 days. After some initial stress, we were able to clarify with both the pharmacy AND with the insurance company that this meant they would pay for it in 20-day increments. I will still get all 42 days' worth of medication, and it will be covered by insurance. But I will only get it 20 days at a time. In 20 days, the next supply will be covered. (STBTF.)

As part of the process of figuring this out, I sent an email to my neuro-oncologist's nurse practitioner about the insurance situation, asking for her advice. I was so glad to have the convenience of email communication. (STBTF.) I also sent a separate email to her with a question about drug interactions. Within minutes she sent me replies to both emails. Such a refreshing contrast to the frustration I experienced before with my neurosurgeon's office! She wins first place in the healthcare provider communication olympics! (STBTF!)

In the morning, before we knew how this prescription insurance thing was going to play out, I happened to get a call from my brother (the dermatology resident). As always, he was able to use his knowledge to put my fears to rest. He knew so much about how medical insurance works, and the typical reasons why a drug would not be covered (which didn't apply to this medication), which gave me greater confidence that things would work out okay (and they did). (STBTF.)

During my MRI scan I kept my eyes closed and snoozed a little. But toward the end of the procedure I was convinced that there were strobe lights flashing in front of my closed eyes. I could "see" them, the way you can sense lights even when your eyes are closed. It was so vivid that I remembered being bothered by the flashing lights, and I wondered whether it would trigger a seizure. Later I asked the technician about it, and she didn't remember any lights flashing during the MRI. It must have been a hallucination. I started to worry that these hallucinations were seizure-related. And I started to worry that this meant I was having seizures out of my occipital lobe, which can sometimes manifest as flashing lights. And I started to worry that this meant the cancer has spread far, and a new tumor must be forming in my occipital lobe. And I really got worried because the occipital lobe is closer to that ever-critical brain stem. My only solace was in the fact that: 1) my hallucinations started right after my surgery, while still in the hospital, and they did an MRI the day after surgery. If there was a tumor, they would have seen it; and 2) if anything is popping up now, it will at least show up on the MRI that was done today, so the doctors will know to do something about it. I still worried about it, though, and mentioned it in my evening phone conversation with my brother. Once again, he knew enough about the anatomy of the brain and the nature of my surgery, and was able to offer some very plausible explanations for those hallucinations that might not involve a catastrophic new tumor. He recommended that I share this information with my doctors, and not worry about it anymore. Once again, he talked me out of my worries. (STBTF.)

Soon I will go to sleep for the night, and hopefully I will wake up feeling better than this morning. I will be safely in the arms of my dear husband, who knew that even in the midst of my hardest times, and even when he couldn't change my circumstances, the best thing he could offer me was himself, always being there for me. He is a source of strength and comfort and love. (STAlwaysBTF) And the icing on the cake is the fact that tomorrow is a day off for him, so he will be home with us all day! (STBTF!)

As I pondered my desire for peace, comfort, and the ability to "be of good cheer," I was reminded of the words of a favorite hymn, called, "Where Can I Turn For Peace?"

Where can I turn for peace?
Where is my solace when other sources cease to make me whole?
Where with a wounded heart, anger or malice,
I draw myself apart, searching my soul.
Where, when my aching grows,
Where, when I languish,
Where, in my need to know, where can I run?
Where is the quiet hand to calm my anguish?
Who, who can understand?
He, only One.
He answers privately, reaches my reaching
In my Gethsemane, Savior and Friend.
Gentle the peace he finds for my beseeching.
Constant he is and kind, Love without end.

Wednesday, January 11, 2006

Being Scarlett

(Wow - I have been quite the prolific blogger today! I think this is, like, my seventh post today!)

My favorite movie of all time is Gone With the Wind. It used to seem like such a long movie until I read the book, and now it seems like it skims through the story. I love it, used to watch it often, and used to be able to quote practically the whole movie. I haven't watched it as much for a while, but it is still a big favorite of mine.

There is one scene where Scarlett is working in the hospital, and she has had enough of seeing the carnage there. The breaking point is when an amputation is about to take place. She flees the scene and when the doctor tries to talk her back into it, she stomps her feet. "I've had enough of death and rot and...death...I won't take it anymore!"

There are times when I feel like Scarlett. I just want to stomp my feet and say, "I've had enough of cancer! I won't take it anymore!" And I somehow want to walk away from the whole thing and have it be gone.

Unfortunately, for both Scarlett and myself, there are still tribulations ahead, as much as we want to avoid them. As someone put it once, you can't go around adversity. You can't climb over it or tunnel under it. You have to go THROUGH it. The through part is the worst of it. But usually once you emerge, you are all the stronger. I have to remind myself that this is the through part. It's nasty and awful, and may get worse before it gets better. At some point there will be a light at the end of the tunnel. (I just hope it's not a tunnel of light, with dead loved ones waving me into it!)

Forever Young

One of the funniest movies I've seen recently is Napoleon Dynamite, and I love it because of its sentimental value for me, having been in high school in the early 80's in a small Utah town. My husband's grandparents lived in Preston, Idaho, where the movie is set, and we visited there once in a while. One of the songs keeps going through my head, and it reminds me of a time when I heard about the death of a prominent church leader, because this song played on the radio right afterward. The words are kind of interesting to me.

Forever Young
Let's dance in style, lets dance for a while
Heaven can wait we're only watching the skies
Hoping for the best but expecting the worst
Are you going to drop the bomb or not?
Let us die young or let us live forever
We don't have the power but we never say never
Sitting in a sandpit, life is a short trip
The music's for the sad men
Can you imagine when this race is won
Turn our golden faces into the sun
Praising our leaders we're getting in tune
The music's played by the mad men
Forever young, I want to be forever young
Do you really want to live forever, forever and ever
Forever young, I want to be forever young
Do you really want to live forever? Forever young
Some are like water, some are like the heat
Some are a melody and some are the beat
Sooner or later they all will be gone
Why don't they stay young
It's so hard to get old without a cause
I don't want to perish like a fading horse
Youth's like diamonds in the sun
And diamonds are forever
So many adventures couldn't happen today
So many songs we forgot to play
So many dreams swinging out of the blue
We let them come true
Forever young, I want to be forever young
Do you really want to live forever, forever and ever
Forever young, I want to be forever young
Do you really want to live forever, forever and ever
Forever young, I want to be forever young
Do you really want to live forever?

Your Money or Your Life

I had a great visit today with the neuro-oncologist's nurse practitioner. She did the training for my chemotherapy, and it was extremely helpful. I start chemo on Monday. My radiation will be either Monday, Tuesday, or Wednesday, or will bump to the week afterward.

One minor moment of fear and trepidation has to do with the issue of my prescription chemo medication. During the training meeting I was asked if my insurance covered prescription drugs, (it does) and whether I paid a co-pay or a percentage (looks like it's usually a co-pay). I was then told that this is a big bargain for me, because the 42-day supply of Temodar (chemo drug) runs upwards toward $10,000. If my insurance covers this drug, we should be just fine. If they don't, we are adding financial stress on top of the cancer stress mountain. I was told that the manufacturer does offer an assistance program for patients who can't afford their drugs, but I have no idea what that means. We won't know until tomorrow (when we pick up the prescription from the pharmacy) what the true cost is going to be.

We know that paying a full tithe allows the "windows of heaven" to pour out blessings. We have been faithful tithe-payers and as a result have realized those blessings. We have always had what we needed, financially. We are hoping for another "tithing blessing" wherein the insurance will cover this drug, and have added it to our prayers.

Take Nothing For Granted

One of the advantages of cancer is that it teaches the value of taking nothing for granted.

The other day I was walking down the street with my dad, and I put on my sunglasses. There was a time (b.c. - before cancer) when I would whip out my sunglasses and hardly give them a thought beyond how cool they looked on me. But as I am recovering from surgery where my incision is a huge question mark shape on the right side of my head, starting at the point where my jaw and ear meet, putting on sunglasses can be a painful experience. Hopefully someday it won't hurt to put them on anymore, and it will be something to be grateful for. Sunglasses that don't hurt. And for that matter, even being able to sleep on your right side (which I finally can do now with minimal pain, and that was a great milestone). Or being able to yawn without jaw pain (still waiting for that blessing). Put these on your gratitude list if you haven't already.

I have several really great friends from high school. One is my husband, my best friend of all time. Another is a breast cancer survivor, and she is a great inspiration to me. I treasure her emails, which are always full of humor and faith. Another high school friend is also very awesome. We talk a lot, and it is so fun. She sent me some amazing chocolate-covered strawberries as a "get well" present. And she laughs with me about the THUNK discussion. She is turning 40 soon, and is approaching that age with the normal apprehension that accompanies all milestone birthdays. In my b.c. (before cancer) days, I was also feeling the willies as my husband turned 39 last year, because it means that 40 is coming around the corner for him, and I am only nine months behind.

But in the a.d. days (after diagnosis), all I can think about is how wonderful it would be to turn 40. To turn 50. To turn 60. And on and on. There is no shame in getting older. Getting older is a privilege. A blessing. Each milestone birthday represents the bounty of life we have been given. For me, my 40th birthday is scheduled for July 2007 - beyond my statistical prognosis. It would be something to be very thankful for.

Take nothing for granted. As illustrated in the story of the optomist who inherits a barn full of fertilizer and runs through it joyfully, shouting, "there must be a pony in here somewhere!", there really are blessings to be found all around us.

The Ironic Song

The other day we had some friends over, and we pulled out the Playstation 2 with its Karaoke Revolution game for some singing fun. I LOOOOOOOOOOOOOOOVE singing, and unless I am a master at self-control I tend to hog the mic whenever we play this game. I did a few ballads and stuff, but I eventually chose what I called the "ironic song" - FAME.

Fame - I'm gonna live forever (uh...I wish!)
I'm gonna learn how to fly high (yeah, right, 0 for 2)
I feel it coming together
People will see me and cry (okay, maybe that's an accurate prediction about my wake?)
I'm gonna make it to heaven (HOPEFULLY an accurate prediction)
Light up the sky like a flame (not sure how that would work, unless it involves some bizarro cremation technique)
Fame - I'm gonna live forever (okay, perhaps if we mean post-resurrection)
Baby, remember my name (a good request for my 7-month old daughter, Emma)

Grieving Myself

It's so weird.

I was reading a magazine article in the cancer center waiting room. (Starting to dip my toe in the water after my initial fear of research.) The article was about cancer patients and depression, and it mentioned that in the weeks following diagnosis, cancer patients often experience shock and grief. I thought to myself, "yeah, that's me." Shock and grief. Faith, hope, gratitude, and trust in the Lord, but also shock and grief.

Sometimes that grief weighs heavy on my heart. Sometimes it doesn't, but sometimes it does. And I was thinking about it yesterday, and it seemed kind of funny. Grief. I'm grieving, um...MYSELF! Other people won't grieve me until I'm gone (and only if they like me). But as for me, I'm already grieving myself now. Like I said, it's so weird.

I'm sure the correct answer to that is that I am actually still absorbing the shock and insult of the bad news, and that I am grieving the loss of my expectations for the future (wow - that psychology degree is worth something). I know there is a typical grief process that steps through various stages (shock, denial, anger, bargaining, acceptance, throwing dishes, yada yada yada). I don't really recognize myself going through any of those stages yet. It's just so darn sad at times. Sometimes I am better enough to focus on other things (like work, family, projects - whatever), and sometimes I can laugh at stuff, and sometimes I feel good about the many blessings surrounding me (including but not limited to: access to good and competent care, generous outpourings of kindness from family and friends, my faith, and the love of my husband and children) but I carry a constant ache in my heart, and sometimes in the quiet moments it just feels so darn sad.

I pray often to give thanks for my blessings, which helps me remember and acknowledge them. There is no sense in asking for more blessings if I don't receive what has already been given to me with gratitude and enthusiasm. I also pray to have the strength and comfort to endure all things, including this grief process. And I keep praying for a miracle so that no one will have to be grieving me any time soon.

Going My Way

Glioblastoma Multiforme (my diagnosis) is a BAD brain cancer. It is very aggressive and nasty. It is bad, bad, bad news. The five-year survival rate is less than one percent. The statistical prognosis is 14 months, and the median prognosis is 12 months, and that is WITH TREATMENT. Without treatment I would be statistically unlikely to see my next birthday in July. It's just the worst diagnosis I could have received from that tumor.

One thing I have learned as I have talked with my doctors, and as my brother (who is an M.D.) has talked with many cancer specialists on my behalf, is that even under these very grim circumstances I do have some things that are working in my favor, that are similar to characteristics of the rare patients who have survived longer than my prognosis. The things that are going "my way" are:

1. My age.
2. The location of the tumor in the right temporal lobe, which is easier to remove surgically if it recurs. The other cancer cells in my brain are more likely to form tumors in the same general area where the first tumor occurred. Had it been near some parts of the brain where autonomic functions are controlled (breathing, heartbeat, etc.), my prognosis would have been worse. My neuro-oncologist mentioned that sometimes glioblastoma patients die when a tumor forms near the brain stem and is not treatable or surgically removable, and it puts pressure on the brain stem and causes the patient to stop breathing. In the Book of Mormon there is a story about a really bad guy who suffered an "ignominious death." That term, "ignominious death," kept coming to mind while the doctor described that final exit scenario. I still shudder at the thought, and hope that we can somehow keep this very aggressive cancer from spreading anywhere near the brain stem or other important areas of the brain.
3. The presence of the Gliadel (chemotherapy) wafer in my brain, which was placed there during surgery. This has been proven in studies to be very effective. My surgeon said that it doubled or tripled the number of three-year survivors. In general, the expectation is that it will at least "buy" me a couple more months.
4. The surgeon did a complete resection (removal) of the tumor. All of the tumor was removed, plus a small margin around the tumor. Because of the nature of glioblastoma, there are still many infected cells in my brain that may recur as tumors, but he was able to minimize the biggest concentration of cancer cells as much as possible.
5. My post-op recovery has gone very well. While I have some physical limitations with regard to driving and strenuous exercise, and while I am still prone to seizures and fatigue, I am considered in all other ways to be high functioning. My memory is intact, my mental abilities are intact, and my neuro tests were all very good. I was cracking jokes on the phone with my brother within hours after my surgery. I have no paralysis or motor skill problems or muscle weakness. If I had lost some significant functionality, the chances of surviving subsequent treatments and surgeries would be lessened.
6. I am otherwise generally healthy and do not have any conditions that would make me a poor surgical candidate, in case they need to go back in to remove any new tumors that pop up. I had no surgical complications from my first craniotomy, and it looks like I am less likely to have major complications from any future procedures.
7. My neuro-oncologist and radiation oncologist are both familiar with glioblastoma treatment, and are well versed in the appropriate standard of care. In addition, there is also familiarity with emerging technology, clinical trials, and alternative treatments in case more needs to be done. If I had gone to a major cancer center like MD Anderson or Sloan-Kettering, it looks like my treatment would have been no different.
8. And finally, I know that there is much faith being exercised on my behalf, with prayers and even fasting on my behalf.

Perhaps these favorable conditions are a clue or a key to unlocking the miracle that we are praying for in earnest. I hope so.

One of the caveats that doctors gave, while discussing these favorable conditions, is that nothing is certain; there are so many variables that govern one's actual lifespan in the face of this very, very, very bad and aggressive cancer. Even with these things going my way, there is no new prediction about my prognosis. But these are hopeful things to know about, and maybe somehow I can leverage these things to survive as long as possible.

Ultimately, as I keep reminding myself, when it comes to prognosis, there is the doctor's time and then there is the Lord's time. The latter will actually govern how long I get to stay here. We are exercising our faith by petitioning the Lord for a miraculous healing and an extension of life. We have enough faith to ask. And we have the "but if not" faith, knowing that if there is a different will for my situation, it is part of a larger design that we can trust in. In the Old Testament we learn that Esther had the "but if not" faith. She asked her family and friends to pray and fast for her before going to the king to try and save her people. She knew that by doing this, her life was in peril. She had enough faith to get people praying and fasting, but she also said, "If I perish, I perish." She had no idea what the outcome would be, but she had enough faith to do all she could and then she put the outcome into the Lord's hands. In trying to follow Esther's example, we are doing all we can to bring about this miracle, including asking for the combined faith and prayers of our family and friends. But "If I perish, I perish." Now, of course, really, I would rather NOT perish anytime soon! I'm sure Esther didn't want to, either. But how this petition will be answered for me is unknown, and so we just trust that whatever the outcome is, it will be the "right" outcome in the greater perspective of the One who created me and loves me and gave me this life as part of a purpose and plan designed to help me reach my highest potential. In other words, the One who is always going my way.

Tuesday, January 10, 2006


Today was my appointment with the radiation oncologist. Again, it was a very reassuring visit. The doctor is not only well skilled, but he is a prostate cancer survivor, so he understands what it is like to be on the patient side. And the facility is very inspiring and informational. There was a social worker, too, who loaded me up with many helpful resources.

As with yesterday's appointment, things went very well, with one exception. As with yesterday's appointment, my entrance to the exam room was preceded by a step on the scale.


A few years ago I dropped 85 pounds. It was great. I loved how I looked, felt - everything! Plus as part of the weight loss process, I established my "exercise every day - no excuses!" policy. And I did it. For nearly three years, until I had my surgery I was vigilant about daily exercise, and it helped a lot. Even in the hospital I tried to do what I could, and was so happy when the physical therapist would show up.

The "THUNK" I experienced this week was the sickening realization that the combination of steroids, holiday treats, and post-op ban on exercise had taken their toll in moving the scale almost halfway back to my starting point. I knew something was up beforehand, because the contents of my closet were shrinking. I always got rid of my "fat" clothes whenever they became too big. "Never more," I thought! It's a strategy designed to keep things in check. But instead, I found myself stomping around the closet with nothing to wear. I expected a little bit of a setback. But this time it is very disheartening. It's not completely back to square one, but it's pretty bad. Most people who battle their weight have dysmorphia - an incorrect perception of what their body actually looks like. Even with that realization, I swear I see my "before" picture every time I pass a mirror. It's gross.

The worst part about it (other than the zillion other things that are bad about it) is the fact that this is the year of memory-making. We bought a new video camera for recording things for posterity. We are going on trips, where I know we will be taking lots of photos. My mom recommended that I get a nice studio portrait done before I start losing hair. I am cringing at the thought of having "fat pictures" again, because it was so fun to be smaller and unafraid of what the camera recorded.

I have been cleared for walking, so I have to find a way to get back into the "exercise every day - no excuses" mode. It's challenging, because I get so tired and sick feeling at times. But we did go for a nice long walk last week, and it felt good. I just have to figure how to fit it in somewhere in my crazy days. I'm not allowed to return to strength training yet, which was a key component of my exercise regimen, but I need to put some (cancer-riddled) brainpower to figuring out what I CAN do, and how to get it done!

I need the next THUNK to be the drop of the needle on the scale!

Monday, January 09, 2006

Popcorn, Frog, Basketball, and Relief!

I woke up today, anxious for my neuro-oncologist visit, and I still felt very worried about whether the records and MRI films were going to get there in time for the appointment.

I called the neuro-oncologist's office and found out that everything they needed had been received, except for the MRI films (and they would cancel the appointment if I don't come with films). I called my neurosurgeon's office again and (MIRACLE!) got a live person. She told me that she didn't think they had the MRI films; that the doctor probably left them at the hospital after surgery. So I called the hospital and (HOORAY) they were able to print out another copy for me to bring with to my appointment. It was a huge relief.

The neuro-oncologist appointment was really great. At first, on the way there, I felt apprehensive, kind of like when I try to look at the books or emailed information about brain cancer. But I just reminded myself to take things a step at a time. This was just one step, and a step forward, which is good. The visit was quite reassuring. The doctor is very well qualified and knowledgeable, and was able to address all my questions. I feel very good about her. My dad was my chauffer and appointment buddy (to help me remember things during the visit), which was also very helpful.

Tomorrow is my appointment with the radiation oncologist. On Wednesday I go back to the neuro-oncologist's office for chemotherapy "training", and then I will take daily chemo pills during radiation treatment. Radiation treatment will likely be five days per week for six weeks. This will be a marathon experience. I go in weekly for blood tests to check white and red blood cell counts. And monthly for MRI scans. After radiation, I will change to chemo five days per month. That's the beginning plan. We have a game plan. Getting ready to start.

The nice thing is that much of the anxiety I had in anticipation of today has been greatly relieved. I still feel a little affected by the reality of the situation, but I have much to be grateful for.

p.s. - POPCORN, FROG, and BASKETBALL are three words that are still going through my head right now. As the doctor gave me some neuro tests, she said those three words and told me to remember them. At the end of the appointment, I remembered two out of three. I don't think I'll forget any of them anymore! :)

Sunday, January 08, 2006

Keep Your Fork

(Again, blogging quickly before I get caught not napping!)

As my husband makes the preparations for Sunday dinner, I am reminded of the "keep your fork" story. (Pause for the collective groan of family members who hear it practically every time we have Sunday dinner with guests...)

As the story goes, a woman is dying and she decides to make final arrangements with her clergyman. As they finish discussing the details of her funeral and burial, the clergyman asks her if there was anything else. "Yes," she said, "I would like to be buried with a fork in my hand."

Seeing the clergyman's puzzled look, she went on to explain: "One of my favorite things is going to church picnics and dinners. And when people finish eating and the dishes are being taken away, I always love it when they say, 'keep your fork'. It reminds me that it's not over, and there is more to look forward to," referring to dessert. "I want to keep my fork, because when I die, it's not over, and there is more to look forward to." And she's right. Death is not the end. There is more to look forward to when we pass from this life.

I'm hoping and praying for a miracle to live as long as I can. Meanwhile, I did tell my husband that if and when I go, I want to be buried with a fork in my hand, too!

Music Therapy

Today was a wonderful milestone: I was able to return to church today and spend time as the music director for the Primary organization (the children's organization). I have worked in this calling for a long time, and I have missed being away from it for so many weeks. I still have many limitations, such as not being able to drive, and being subject to fatigue very easily, but I was still able to spend some time teaching these adorable children how to sing a new song.

Our family just returned home, and I am pretty tired but blogging very quickly before my husband (the Nap Nazi) catches me still awake. I'm just very happy that I could spend some of this time today in "music therapy". I think next week I will also be able to resume my duties as the choir director at our church. I hope I will have the energy to do it, because I also consider it to be therapeutic.

My six-year-old niece, who is beyond adorable and always full of faithful insights, told her dad that if I died, "Maybe it's because she's supposed to lead the choir for the Second Coming!" Her comment made me giggle. Actually, if I had to go, I guess I would like a job like that. I sometimes make a silly picture in my head of telling the heavenly choir members to drop their jaws and breathe properly. Maybe we could sing something by Handel. Maybe he will be there to help out. Maybe it would be music therapy during that transition from Earth to what comes next.

However, I remain prayerful (and today I was happy to find that many others were prayerful, too) that my days here might be extended. I'm sure leading a heavenly choir would be a great job. But meanwhile, I think our church choir is already quite heavenly, as is the choir of children's voices in our Primary group. I hope to keep those jobs, and enjoy that music therapy, for a long, long time.

Saturday, January 07, 2006

The Picture of Life

Today my in-laws were kind enough to watch our children, giving my husband and me a chance at an afternoon outing. We went to a book store first and spent quite a while there, and then we drove to Central Market. For those who have never been there, it's quite the winding path through the store. As we entered the front door, my husband ordered me into a wheelchair cart, insisting that he would push me through the store. I was feeling pretty tired, so I submitted and sat down. It was a good idea, because we did "walk" quite a bit through the large and maze-like store. I think it would have been a very tiring experience, especially after spending so much time in the book store. But as he wheeled me through the parking lot to the car, I thought it was such a tender picture - this man dutifully pushing his terminally ill wife in a wheelchair. And I asked him, "When we were dating, did you ever think it would come to this?" Of course, the answer was no. We were so young and naiive and we thought we were invincible back then. We were so smitten with each other. We had all kinds of dreams for our future together. We had no idea that there would be limitations on that future together. We had hopes of living and playing together until we were very, very old, and then just dying in our sleep together, holding hands. Granted, we knew the odds of that were very small, but still - the idea of one of us being widowed so young was unthinkable. It wasn't in our picture of life.

Everyone has a "picture" in their mind of what they think their life will be like. They usually paint it in their youth. Yet, very few people realize the picture as it was originally painted. Unfulfilled expectations are very common in life. They often require us to change that picture, and that can be really hard. What do you do?

I always think of the story of the little girl who goes with her mom to register for kindergarten. The teacher gives her a box of crayons and tells her to choose her favorite color and write her name. The little girl stares at the box and doesn't move. Finally, the teacher says, "That's okay. We'll teach you how to write your name when you come to school." On the way home, the mother asks her daughter why she didn't write her name. After all, she knew that her daughter could write very well. Her daughter replied, "She told me to choose my favorite color, and there wasn't a pink crayon in the box."

Sometimes when life's circumstances force us to change the picture of our life, it feels paralyzing, just like when that little girl didn't find the pink crayon. It may seem so hard to move forward. But we have to move forward. We have to metaphorically find a green crayon and do all that we can do.

Sometimes it's like the analogy I once heard in an essay by Emily Perl Kingsley, called, "Welcome To Holland". You plan a trip to Italy with great enthusiasm. You study the language. You read travel guides to choose the places you want to visit. You buy the perfect wardrobe for the trip. You board the plane, eager with anticipation. However, during the flight you are informed that the plane will not be landing in Italy, after all. It will be landing in Holland, and it is in Holland where you must stay. You must learn a new language. Learn new places to visit. You may need a different wardrobe. As you first arrive in Holland, you run into others who have returned from their trips to Italy, and they talk about how wonderful it was. It seems unbearable. But then you learn that Holland has tulips. Holland has Rembrandts. Holland has windmills. Holland has its own wonders and joys.

When the picture of our life changes, we endure a season of mourning. But we can eventually find new wonders and joys to discover. We can eventually paint a new picture. (Maybe even a Rembrandt!)

Friday, January 06, 2006

Dying of Frustration

Some people wonder, what exactly about brain cancer kills the patient? In some cases, too much of the brain is so consumed with recurring tumors. In other cases, the body is unable to withstand the battery of treatments, and the immune system shuts down. I read somewhere that 70% of patients actually die of infection because of immune system failure. Or maybe there are other complications associated with treatments.

I think some patients die of frustration trying to coordinate their medical care.

To be fair, I must acknowledge that I do have some good things to say about my medical team. For example, my neurologist is very knowledgeable, very skilled, very organized, and is also a man of great faith and compassion. He offered a beautiful prayer for me during my recent appointment. And he and his staff really stay on top of things. His staff was amazingly skilled at getting me appointments for my MRI, EEG, and initial consult with the neurosurgeon with astonishing speed.

My neurosurgeon is also highly skilled. He also remembered things that were important to me, like preserving my musical ability. He took great care to protect that part of my brain. He was very sympathetic when he told me my diagnosis and prognosis. And when we are face to face, he always takes time to answer all of my many questions, and never makes me feel like any question is dumb. His staff is very nice when I am in the office. BUT - since my post-op appointment, I have had a series of frustrating communication failures with my neurosurgeon's office.

During my post-op appointment I specifically asked about protocol for contacting the neurosurgeon for questions, medication issues, etc. He said, "Just call my office." I also asked about things I should be on the watch for, and he said that basically any increase in headache or seizure activity, or any noticeable personality changes, should be reported to him.

The following week I had a day that was worth reporting. I had a couple of episodes that reminded me of my seizures, but I wasn't sure what they were. There was no deja vu and no phantom smell, but the same overwhelming sick feeling was happening. In addition, I was really feeling what seemed like textbook depression. Although it was a predictable effect of the steroids being tapered off, it was a change worth noting (as well as discussing to see if there should be any change to my medication). I called the office and the live person put me into a voice mail system. I left a message saying that some things were happening that were supposed to be reported, and I asked for a call back. No one called back. I left another message for the next day. No call back. Ever. Good thing it wasn't an emergency. Just cause for stress over whether things were okay or not. And no opportunity to get relief from the suffering I experienced.

Also, in the post-op appointment I was given the names of the recommended neuro-oncologist and radiation oncologist. I was told that my records were being sent to these doctors, and that they would be contacting me to start January treatments. Since neither of them contacted me this week, I called them today, because I am anxious to know WHEN in January these treatments will begin. When I called, I found out that the reason these oncologists hadn't contacted me was because neither doctor had received my records. Both doctors could see me early next week, and I was told that yes, I should definitely come in very soon. I made an appointment on Monday with the neuro-oncologist and on Tuesday with the radiation oncologist. BUT - they both need my records from the neurosurgeon, and they both want my MRI films (which currently reside with my neurosurgeon). They emphasized the need to make sure they get these records and films in time for my appointment.

I called the neurosurgeon's office and spoke with his assistant. I explained the need for records and films for these upcoming appointments. I even offered to come by the office on Monday morning to pick up the records and films so that I could carry them to my Monday appointment. "I'll find out if the MRI films are available and call you back," she said. But she didn't. I faxed a letter to the neurosurgeon's office, requesting the records, emphasizing the urgency of the records, and requesting: 1) please fax or courier the records in time for the appointments; 2) let me know if I need to pick the films up; and 3) call me to confirm that the records have been sent. I received no reply. I faxed the letter again. Again, no reply.

As a result, I get to spend the weekend stressing over whether my appointments with these oncologists will be cancelled or rendered ineffective because the records and films were not available. I get to worry about whether this will delay my much-needed treatments, and whether that delay will make my prognosis even worse. I get to anticipate how I will wrangle with the office staff on Monday morning (assuming I somehow even get through to a live person) and get anything accomplished. Since I am dependent on someone else to drive me, I get to figure out how to ask them to take me to the neurosurgeon's office for the possibly futile effort of chasing down and waiting for copies of records on the way to the oncologist's appointment. I get to debate whether it's appropriate to call on the emergency line and page the on-call doctor tonight or during weekend hours to make another plea for records.

I remember watching a movie years ago, called "The Doctor", which was about a doctor who became ill and had to learn what it was like to be a patient. I wonder if these staff members have any idea what it is like to be a patient dealing with a complex medical problem under such frustrating circumstances.