Should auld acquaintance be forgot

Being New Year's Eve, the song "Auld Lang Syne" keeps going through my head. (Yeah, that cancer-riddled head!)

Should auld acquaintance be forgot,And never brought to mind? Should auld acquaintance be forgot, And auld lang syne?

The translation from Scottish into English is:

Should old friendships be forgotten and never remembered? Should old friendships be forgottenAnd old friends and days?

Well, the good news is that my memory was left intact from my surgery, so I didn't really forget anything. And how could I possibly forget old friendships, when I have been constantly reminded of them through kind emails, phone calls, letters, cards, gifts, and acts of kind service.

I will never forget my friends and my family members. They are very dear to me. My hope is that the relationships I treasure will outlast me, in that they will continue far into the eternities.

Happy New Year!

Poems from Auntie Theresa

These were too good not to share - thanks and (((HUGS))) to my Aunt Theresa:

A Prayer
by Theresa Olesen dedicated to Krista

Thy will, Oh Lord, not mine be done.
Yet, please remember my daughter and son.
Remember my husband, and the dear ones I love,
Watch over us all, from Thy throne up above.
To my dearest Savior, I look for my strength,
He gave an example, and the bitter cup drank.
May angels attend me. Heal... if Thou wilt
But on the rock of my Savior, my faith will be built.

Today
by Theresa Olesen dedicated to all who know Krista

Have I told you today that I love you?
Have I hugged you or sung you a song?
Have I heeded the needs of my neighbor?
Have I sought to right all my wrongs?
If I knew I were dying tomorrow,
What behaviors would I change today?
If my time on earth were ending,
Would I quickly remember to pray?
Let's not put off to do till tomorrow,
The things that are needed today.
Let's remember the poor and the needy,
Let's remember to laugh, love, and pray.
Let's take time to honor our loved ones.
Let's be kind and tolerant to all.
For we never know the moment,
When for us, Heaven will call.

Approaching the Bench

My mother is an attorney. She gave me a great courtroom analogy for praying for a miracle.

Mom said that, first of all, a judge cannot grant anything that you don't ask for, even if you are entitled to it. You have to petition for what you want, in order to have a chance at getting it.

Second, you have to make a compelling case for your petition. If you do, the judge is more likely to grant your petition.

As we "approach the bench" in prayer, we are boldly asking for a miracle. We are specific in our requests. Complete remission. Cancer driven from my body. An extension of life sufficient to raise my children. We are asking for the very things we want.

We are also giving our compelling case. In my pleadings, I have told the Lord that no one will ever love these children like I do. No one will ever be their mother in the same way that I am. No one will ever teach them the way that I can teach them. This is the work that I want to do with my life. I want to raise them up as servants to the Lord.

As always, these prayers are punctuated with "thy will be done". Our petition will only be granted in accordance with the Lord's will. But we have made our righteous desires known, and we have given our reasons for asking for them.

Telling My Son

Dr. Phil advises that children should not be burdened with adult issues. I have been reluctant to tell my son about what is happening, because I don't want him to be burdened.

Instead, we have spent a lot of effort teaching him "foundation principles" that will hopefully help him when the time comes to apply that information. We have had family discussions on the Plan of Salvation. We have talked about the Atonement of Jesus Christ. We have also talked about the temple ordinances that have sealed our family together for "time and all eternity", so that our family relationships will continue beyond the grave. We had a little activity where we used finger puppets (puppet represented the body, finger represented the spirit), and we all had a turn to leave heaven to be born and come to earth and receive a body (finger puppet). Then we talked about how we will all have a turn to die and leave our body behind, and have our spirits live in heaven. And after we all have a turn to die, we will be resurrected (finger puppet back on the finger) and live together as a family. This was made possible because of Jesus Christ and his restored gospel on the earth.

However, the time came when I felt strongly impressed to talk to Jacob about what was happening. I didn't want him to overhear things that might worry him. I figured the best defense was a good offense. So I sat him down and told him I had something very important to tell him. I said that I was very sick. I had something in my brain, called cancer. I explained that sometimes when people get sick with cancer, they die. I told him that because I am sick, my body might die. But I don't want to die. So I am trying to get better. I said that the doctors are trying to help me. And I said that we are praying for help so that I can get better. I told him that if we all pray for me to get better, and if it is not my turn to die, then Heavenly Father will make me better. But if it is my turn to die, then someday I will die and my body will be buried in the ground and my spirit will live in heaven. And I will miss him and Daddy and Emma so much. But after a long time - after everyone has their turn to die - we will be together again. I will always be his mommy. I told him that I didn't want him to be worried or scared, but I hoped he would remember me in his prayers.

I also reminded him of the story we read recently, called "The Kissing Hand". It is a cute story about a raccoon who is getting ready to leave for school, but he is worried about missing his mommy. So his mommy kisses his hand and tells him that any time he misses her, he can use his "kissing hand" to put more kisses on his cheek and feel her love. My son and I had fun giving each other "kissing hands" in case we ever missed each other.

My son took this in stride. Much easier than he did when we told him about my trip to the hospital. That time he cried. Much easier than when his goldfish died. He grieved considerably over that. This time he didn't cry. My biggest concern is sparing him the pain of grief, if the time ever comes to grieve me. Hopefully these discussions will prepare him without causing him to worry.

Brain off steroids

Okay, so now the steroids are being tapered off. The doctor explained that it may have a "depressing" effect. I feel like the high energy and excitement during my post-op recovery is now a pendulum swinging the other way - hopefully not like a manic-depressive or anything like that. But I do find myself being saddened by small reminders of my situation, and I feel an ache in my heart. Tears come easily to the surface, and while I hate to cry, at least I sometimes get in a few "good cries", which are sometimes good to have.

I still have my faith. I still have my trust in the Lord. Grief is not a loss of either. I have learned that grief is a very Christian thing to do. Even Jesus wept. He was a "man of sorrows, and acquainted with grief." There is a difference between grief, which is a natural emotion directed toward the things we love and value when we experience (or anticipate) their loss; and despair, which is a destructive emotion that represents the total loss of hope and faith. I feel like I am paying the price for love. The things I love - my family, my life, my abilities - are things that I would miss dearly. I grieve the anticipation of separation from these things because I have loved them. I want very much to have the miracle that we are praying for in earnest, because even though I am willing to put this in the Lord's hands and accept the outcome that is granted, the thought of losing this battle is so very sad to me.

Another silly thing that I am experiencing as my mind adjusts chemically to the changes going on, is a very low threshold of frustration when it comes to losing things. I lost my drivers' license, my temple recommend, my wedding ring, a favorite necklace, and other various trivial things at times throughout the week. Many of these things were since found, which was nice, but it got to the point where I would look for something and be unable to find it, and I would immediately feel a white, hot rage inside! It was so maddening to have to look for something again. Looking at it rationally, I realize it's not a big deal. It's just a silly annoyance that I can hopefully avoid by being a little more organized. But it amazes me how swiftly my emotions surfaced so dramatically in reaction to a simple misplacement.

I am hoping that as the steroids finally taper off and my body adjusts to the changes in my system, that perhaps these silly emotional responses will be a little more even-keel. I have much to be grateful and happy about. I shouldn't complain or cry so much. I shouldn't be so wacky over trivial things. Hopefully in due time I won't be!

From the Diary of Adam and Eve

Forty Years After the Fall
EVE: It is my prayer, it is my longing, that we may pass from this life together--a longing which shall never perish from the earth, but shall have place in the heart of every wife that loves, until the end of time; and it shall be called by my name. But if one of us must go first, it is my prayer that it shall be I; for he is strong, I am weak, I am not so necessary to him as he is to me--life without him would not be life; now could I endure it? This prayer is also immortal, and will not cease from being offered up while my race continues. I am the first wife; and in the last wife I shall be repeated.

At Eve's Grave
ADAM: Wheresoever she was, THERE was Eden.

Project Hezekiah

As I sat with my husband in the temple today, reading through the scriptures, I came across 2 Kings, Chapter 20, which included a story that was of special interest to me under my present circumstances:

1 - In those days was Hezekiah sick unto death. And the prophet Isaiah the son of Amoz came to him, and said unto him, Thus saith the LORD, Set thine house in order; for thou shalt die, and not live.
2 - Then he turned his face to the wall, and prayed unto the LORD, saying,
3 - I beseech thee, O LORD, remember now how I have walked before thee in truth and with a perfect heart, and have done [that which is] good in thy sight. And Hezekiah wept sore.
4 - And it came to pass, afore Isaiah was gone out into the middle court, that the word of the LORD came to him, saying,
5 - Turn again, and tell Hezekiah the captain of my people, Thus saith the LORD, the God of David thy father, I have heard thy prayer, I have seen thy tears: behold, I will heal thee: on the third day thou shalt go up unto the house of the LORD.
6 - And I will add unto thy days fifteen years; and I will deliver thee and this city out of the hand of the king of Assyria; and I will defend this city for mine own sake, and for my servant David's sake.

A man was appointed unto death, and instead receives a fifteen year extension of life from the Lord. The Lord heard his prayers and saw his tears, and healed him.

My own efforts to petition the Lord might as well be called "Project Hezekiah"! I am hopeful and prayerful that the Lord will hear my prayers and see my tears, and heal me. An extension of any time would be most welcome.

Today Was a Good Day

In the movie, "Christmas With the Kranks", there is a scene where the family's neighbor (who is dying of cancer) is asked how she is doing. She replies, "I have my good days and my bad days. Today was a good day!"

I thought about that today. Today was a good day for me.

I had a good night's sleep, and awoke to some productive writing for a project that I am working on.

At 9:00 the doorbell rang, and my fairy godmothers showed up. These were women from my church who arrived with buckets and pails of cleaning supplies and excited giggles. They scrubbed my house from top to bottom while I went to a doctor's appointment.

I met with the neurosurgeon for my post-op follow-up. My brother came with me so that he could speak doctor-to-doctor with my surgeon. It was a constructive visit that made us feel good.

"Part A" of the visit was basic post-op stuff: getting my stitches and staples out, assessing the incision area, talking about medications, discussing return to normal activities, identifying things to watch for.

"Part B" of the visit was "okay, now what" stuff. Starting work on the battle plan for my life. The doctor reiterated that my age, the location of the tumor, and the chemo wafer, were all favorable conditions that may help maximize my potential prognosis. Next steps include radiation and chemotherapy, starting in January. I will be referred to a neuro oncologist and a radiation oncologist. We have some idea of what to expect in the next couple of months.

I stopped by my business office and picked up a check from a client. We returned home to the smell of Pine Sol and the sight of gleaming wood floors. We shared a nice lunch as a family, including a young woman who came by to play with the children so I could rest.

I had a good nap and awakened to flowers, visitors, phone calls, and a nice meal. My youngest brother is on his way to our house for a few days. He should be here soon. We love spending time with family.

I read some books to my son as I tucked him into bed. Then I told him the story of when he was born and we adopted him, and we looked tearfully at each other as I expressed my love for him. It was one of those "wish I could suspend in time" moments. It was wonderful.

Today was a good day.

Ain't That a Kick in the Head

(My apologies to Dean Martin):

How lucky can one girl be?
I kissed him and he kissed me
Like the fella once said, Ain't that a kick in the head?
The room was completely black
I hugged him and he hugged back.
Like the sailor said, quote, "Ain't that a hole in the boat?"
My head keeps spinning;I go to sleep
And keep grinning;If this is just the beginning
My life's gonna be beautiful.
I've sun- shine enough to spread
It's like the fella said,"Tell me quick - Ain't love like a kick in the head?"

Dedicated to my favorite "kick in the head" - my dear husband and great love of my life, Jared!

Summon the ghosts of Christmas Past

As a follow up to my earlier post today, I thought it might be worth adding the recipe for those
!@#$ nutmeg logs that, to me, summon the happy ghosts of my Christmas Past:

Nutmeg Logs

1. Preheat oven to 350 degrees F. Line two cookie sheets with parchment paper.
2. Whisk together 3 cups flour and 1/4 teaspoon salt in a small bowl.
3. In a large mixer bowl, beat 2 sticks softened unsalted butter until creamy. Add 1/4 cup sugar and beat well for about 3 minutes. Add 1 tablespoon rum extract, 1-1/2 teaspoons nutmeg, and 1 teaspoon vanilla extract; mix well. Beat in one large egg.
4. Gradually add flour mixture until just blended. Take dough and shape into logs by rolling into 1/2 inch diameter ropes, then cutting ropes into 3-inch lengths.
5. Place logs 2 inches apart on prepared cookie sheets, and bake about 13 minutes, or until light golden brown on bottom and edges.
6. While cookies are baking, prepare icing by beating 3/4 stick of softened butter until creamy. Add 2 cups powdered sugar, 2 tablespoons heavy cream, 2 teaspoons rum extract, and 1 teaspoon vanilla extract until creamy, about two minutes.
7. Remove cookies from oven when finished, then place on cooling racks. While still warm, spread icing on cookies with a small spatula. The icing, which is thick and fluffy, will melt and harden onto the cookie while cooling (making them easy to layer in tins). Sprinkle with a dash of nutmeg while the icing is still wet. Allow cookies to cool and icing to harden before serving.

Simple Pleasures & Tender Mercies

My family thinks I'm nuts, and they are probably right. In the past couple of days I have been obsessing over some very simple but very important little things, and I have been delighted to have some of these little things work out for me. To name a few:

1) The !@#$ Gingerbread Train: In my past life as a Pampered Chef person, I acquired some stone cookie molds, including really cool Christmas train and village molds. I envisioned my son happily assembling some gingerbread Christmas trains and villages as part of the "fun family" memories of Christmas that are sometimes so dear. I bugged my husband incessantly over the weekend, and happily awakened from my nap on Sunday afternoon to the heavenly aroma of baked gingerbread. After our typical Sunday dinner gathering, a bunch of us got together to decorate and eat these gingerbread trains. My son had a great time. We played Christmas music. It was awesome. Simple pleasure = Christmas gingerbread trains beheld by a four-year-old little boy.

2) The !@#$ Nutmeg Logs: As a little girl, I remember Christmases past that included a heavenly cookie called the Nutmeg Log. I am such a cookie monster, but these treats were the ultimate Christmas cookie to me. I have so many happy memories of my mother baking these little log-shaped cookies with a nutmeg icing, which were given out to neighbors or served at family functions. Yum yum yum yum yum.

For years, however, the recipe was lost. The great Nutmeg Log Apostasy. The cookie dark ages. I searched every recipe index I could find, every cookbook - whatever. I was a woman on a mission. Last year I came across a Christmas Cookie book at a kitchen store, and EUREKA! A recipe for Nutmeg Logs! I baked them last year and danced on my toes as the aroma and taste brought back all of the happy ghosts of Christmas Past.

This year I couldn't wait for them to appear in my kitchen again. My mother was visiting for the weekend. My big agenda item (after the Christmas train thing) was to MAKE NUTMEG LOGS! Every time I walked into the kitchen, I demanded the status of the nutmeg logs. No, Krista - maybe tomorrow. We have other stuff to do. Everyone rolled their eyes as I continued my desperate pleas for NUTMEG LOGS!!!! Yesterday was Mom's last day visiting. She took me on a short shopping trip in the morning, and insisted that I go home and rest. It was time for a badly needed nap. But as I turned in, I begged to awaken to the smell of nutmeg logs before it was time for her to leave. And so it was, yesterday evening, I walked into the kitchen to behold Mom putting the icing on the cooled NUTMEG LOGS! Hooray! We nibbled at them all evening, and the happy ghosts of Christms Past were there. Simple Pleasure = NUTMEG LOGS!

This morning I realized that I had one big agenda item for the day - to find my driver's license. This valuable ID card has been ever-elusive as merchants, doctor's offices, and hospital administrators required its disclosure at every turn. I remember showing it last at the hospital on the day of surgery, but hadn't seen it since. A desperate search of my house revealed nothing. My husband and I groaned together at the idea of having to go to the DMV today to get a duplicate license. Ugh.

However, this morning there was a glimmer of thought that finally broke through the clouds and led us to - TA DA! - my license! It was in a weird spot that was revealed finally by this deductive reasoning process. No more prospect of waiting hours at the DMV. Our plate is cleared again for activities that are more pleasurable. Simple Pleasure = DRIVER'S LICENSE!

The scriptures talk about the "tender mercies of the Lord", which to me are simple helps and reminders of blessings that surround us even in the midst of adversity. We have seen many tender mercies and experienced simple daily pleasures, including (but not limited to) the following:

• Being told at the hospital that despite an anticipated $65,000 charge for my surgery and stay, our copay would only be $150. We have awesome insurance! (Thanks again, Mary Kay!)
• Finding a way to wash my hair without getting the stitches wet (makes me feel like a human again!)
• Awakening from a nap to a kiss, hug, and smile from my son, who then climbed on my lap for storytime. (Talk about a "let's stay frozen right here in time" moment!)
• Getting a poster from my son's preschool teacher, telling me what a great day he had at school.
• Getting daily phone calls, from "what can I do for you today?" to "I just made some candy - I'll bring it over", to "I have a floral delivery. Can you give me directions?"
• Driving around the town to look at beautiful Christmas lights. It is so fun to see so many celebrating this special time of year.
• Putting on my "party pants"! I saw a book title the other day that was called, "Life is Short - Wear Your Party Pants". I am always on the lookout for comfy and fun pants, from silky pajama pants to velvety yoga pants, etc. Party pants. I add fuzzy socks and I'm ready to party.
• Having a house full of people. We moved into this home last May, and it has lots of room for family gatherings. I love it when we have people crammed in here, playing here, crowding around dining tables, packing around pillows to watch movies, making everything a big mess but loving each other too much to care how messy it gets. We have so much fun together.
• Watching my brother's disco DVD. A video recording of him doing his best John Travolta impression to the Bee Gee's "You Should Be Dancin'". It is soooooooo cool! It makes me wish my husband and I had videotaped our own smashing fun clogging routine last year to "Dueling Banjos". Dancing is so fun and full of life.
• Watching the photo DVD scrapbook that my sister-in-law made for their family. My adorable niece and nephew in animated pictures set to music, recapping some earlier memories of a family reunion.
• Receiving Lance Armstrong's book last night as a gift from my cousin. (Thanks, Ron!)
• Getting encouraging emails from professional and personal contacts, all of whom share a positive message.
• Hearing the angelic voices of children who have come a-caroling at our door.
• Having my husband tell me that he has taken care of the garbage on pick-up day. And that he did a load of laundry. What a keeper!
• Talking with my mom about Disneyworld and Manhattan: two trips that have been donated by kind family members once we figure out the details.
• Petting my beagle, Buster. Dogs are therapeutic and fuzzy and warm. He is also good for my son, and my son is good for him. Every boy should have a dog.
• The smell and feel of my husband's neck when he holds me tight. He always has been, and always will be, the great love of my life.

Once again, there are too many more to list. But I find myself looking each day for these simple pleasures and tender mercies, and they are easy comforts to find.

Clarion Call for a Miracle

On the one hand, I feel prepared to accept the Lord's will in all things. I do not want to ask for anything amiss.

On the other hand, I know that God is All-Powerful. He created all things and commands all things - every element and particle of life. All creations are subject to His will. Miracles can and do happen all the time.

Last night my husband and I talked about things, and it occurred to us that we should ask for that miracle. A miracle of remission. A miracle of healing and commanding the cancer to depart from my body. A miracle of treatment opportunities that will extend my life.

This morning my brother expressed a similar prompting. This evening our bishop's wife brought over dinner and expressed their family's discussion about the same thing. They feel the need to pray for a miracle and intend to "weary the Lord" on my behalf.

So here we go. I think it is time that we ask. We can still say "Thy will be done", but we can ask for this miracle. All things are possible with faith and prayer, subject to His will. The outcome is not certain, because we do not know His will. But we can show our hope and our faith by praying for this miracle, doing all we can, and then accepting the outcome with full knowledge that it was in accordance with a Heavenly plan.

Please let the prayers begin. Be specific and faithful. Be willing to accept the Lord's will, but express this collective desire for an extension of my life, for a remission of the cancer, and for the most effective treatments possible at the hands of skilled professionals.

Sometimes the miracle is not a specific outcome, but is instead the type of miracle that occurs in the hearts of the faithful as they express righteous desires to the Lord. We can petition for all that the Lord will do under these circumstances. I hope there is a specific type of outcome. I really want to survive this cancer. I want to live as long as I can, to raise my children and be with my family and accomplish all that can be done with my life. I ask all to please help me pray for this miracle. Once we have done this, I ask all to faithfully accept the outcome within the will of the Lord, grateful for all that will be done on my behalf.

The Good Life

Life is measured in quality rather than quantity. We all want more quantity, to be sure. I desperately want more quantity. But I have had the opportunity to measure the quality of my life. Here's a brief summary:

1. I have been born of goodly parents who have taught me the gospel principles and values that comprise my spirit today. They gave me unconditional love and a big ego and much good advice.
2. I have been married to the great love of my life. My husband is the most incredible man in the world. He is the most incredible husband. From the time I first fell in love with him 23 years ago, and during our 17-plus years of marriage, we have been partners in a great love story that will hopefully outlast time itself.
3. After years of waiting and hoping and praying, I was finally given the opportunity to adopt two wonderful children. Being a mother to Jacob and Emma has been a constant source of joy.
4. I have been blessed with wonderful talents and abilities, and opportunities to use them in many ways.
5. I have enjoyed professional success, personal enrichment, and the love of many. I am surrounded by wonderful people who are so good to me.
6. I have been prepared for all of my circumstances with learning experiences. Some have been hard and bitter. But life has always prepared me for life, and I have been given valuable lessons to prepare me for all that I need to endure.
7. While it comes with a bitter price tag when morality brings separation, I have been blessed with great love. Amazing love. Love that returns tenfold (or more) on my investment. It will bring sorrow upon separation, but it will also bring an eventual joyous reunion someday.
8. I have friends who will laugh with me, cry with me, pray for me, and comfort me.

I do not have adequate space to continue this list. But let it suffice: I have lived a good life. I have a life that I can be grateful for. I wish that it could be longer. I wish that so much. None of us is guaranteed a particular quantity of life. But even if that quantity were depleted today, I could still shed grateful tears for a very good life.

The "no no no no no" Day

This morning was my "no no no no no" day. The full weight of my situation fell upon my shoulders, and I wept bitterly.

Sometimes I feel like I am being carried on a cloud of faith. Sometimes I feel strong enough to handle all things. I know that I can trust in the Lord and feel the peace of that submission.

However, sometimes I think of the details of this process. The pain my son will suffer. The separation from my husband - the great love of my life - and my beloved children. The events I will miss. The details that are too painful to ponder.

And sometimes, despite my faith and my strength, I have those moments where my heart breaks and I want to cry out, "no no no no no NO!"

The answer is silent. What will be will be. Endure it well. Doubt not, fear not. All will be well.

Brain on Steroids

I have enjoyed a couple of shopping sprees with my husband, who is always concerned that I am pushing things too far. "Your brain is going faster than your body," he observed.

This morning I was up early in response to a church magazine that had a couple of recent calls for articles. I cranked out two articles and fired them off to the editor.

My dad peeked in on me as I typed madly, and commented that it must be my medication or something, causing me to go a zillion miles an hour in my head while my body is desperate for a nap.

As I reviewed the concoction of medications that I take every six hours, I realized - Aha! It's my brain on steroids!!!

Cancer is so limited...

A friend of mine emailed this poem to me. I think it is pretty awesome:

"Cancer is so limited . . .
It cannot cripple Love.
It cannot shatter Hope.
It cannot corrode Faith.
It cannot destroy Peace.
It cannot kill Friendship.
It cannot suppress Memories.
It cannot silence Courage.
It cannot invade the Soul.
It cannot steal Eternal Life.
It cannot conquer the Spirit."

So let me live...

Every six hours I awaken to a schedule of medications designed to help my recovery from surgery. Pain meds. Anti-seizure meds. Steroids to prevent swelling. Vitamins. All that good stuff to help me heal. But as I sit up to take those medicines, the thought occurs to me that while these help the healing from surgery, they do nothing to change the reality of the cancer.

Yesterday was a day of great reflection and communication with those I love. In some ways, it was just sweet to tell family members and friends how much they meant to me, and to feel their love. In other ways, I felt like I had my own personal "Make-A-Wish Foundation". I wept as my mother described a plan hatched among relatives to ensure that there will be some amazing family trips in the coming year. Disneyworld with the kids. Manhattan at Thanksgiving. Things we would love to do to build happy, lasting memories together, because memories matter. I am so excited! Additional promises were given to help support the children and make sure they have the care they will need in my absence. A cousin called with a promise of Lance Armstrong's book, because it is an inspiring account of someone who beat the odds. And my brother called from New York to announce that he will be coming to visit during the week before Christmas! As I shared my excitement with him, a friend dropped off two heavenly plates of candy, and the scouts came by with caroling and cookies. This was after the typical day of extraordinary help with meals and childcare and driving from kind friends from our church. We are so blessed. Kinda makes the whole brain cancer thing somewhat fun!

I begged one of my dear friends from high school for a copy of a poem she read when her grandfather died. I remembered a few snippets from it, but she was kind enough to send me the whole thing. Here it is:

So let me live that when I die,
A tear will come to every eye.
In every heart there'll be a spot,
An empty place where I am not.
So let me live that when I’m gone,
Kind thoughts of me will linger on.
And folks will say, with grief inside,
I sort of wish she hadn’t died.

I pulled up another quote from Benjamin Franklin - one that is displayed at Twelve Oaks in my favorite movie, "Gone With the Wind":

"Dost thou love life? Then do not squander time, for that's the stuff life is made of."

Grade 4 Glioblastoma

The pathology report was given to my by my sympthetic neurosurgeon as I made final preparations to leave the hospital yesterday. He patted my leg and apologetically lowered the boom: Glioblastoma. Grade 4. Statistical prognosis around 14 months. I am dying of brain cancer. Report in a while for radiation, chemo, and more MRI scans to help prolong the process as much as possible. The brain, which has always been the most fascinating part of the body, is now the one part that threatens my life.

I am still recovering fairly well from surgery, dealing with a lot of head pain, jaw pain, and visual hallucinations. But I've been seizure free as far as I can tell, my hair is combable over the "Frankenstein spot", I remember stuff, and I think I have left most of my personality intact (as in, no - I didn't turn into a b****). I was able to exercise a little with the help of the physical therapist, and it looks like most of my neurological functions are good.

The emotional reaction to this news is very difficult. I am obviously sad and distressed by the news. Family and friends have barraged me with everything from hugs and prayers to angry insistence that I must become one of those who "beats the odds". I hear stories all the time of people who did. I watch my husband bear the weight of this news with his tears and fears. I hold my children and wonder how they will handle this.

Okay, so I believe we all have a date. We all have "our time" - you know, when the big bus of mortality runs you over. None of us is guaranteed to be here in fourteen months, let alone fourteen days. Fourteen months is never long enough. We always want more time. But there is a gift in knowing that the big bus will be coming, so we can be prepared for it. I will make better use of the coming year than I would have if I had just squandered it away and then tragically got caught off guard by the bus.

So the control freak in me is busily occupied with thoughts of things I need to do right now. Things left unfinished in life. Things unwritten. Words unspoken. Plans unmade. I am grateful for this opportunity, although it is distracting and overwhelming to think about. I pray that I will have the physical and mental strength to do these things in between medical interventions.

My other overriding thought is that there is the doctor's time, based on his best estimate (although he did grant me some favorable allowance for my age, tumor location, and the presence of the chemo wafer still in my brain, possibly buying me a small amount of extra time), and then there is God's time. God's will. I pray that it will extend my life long enough to raise my children and do all other things planned for my life. But as in all things, I believe the Lord's will must be done. He will care not only for me in this life and the next, but he will also care for my family. All may still be safely rested in his arms. But for now there is still a time of digesting and grieving some difficult news, and setting our sights on what is left of our future.

Jared's Day at the Hospital

Krista and I arrived at the surgery center bright and early at 5:30 in the morning. Check-in was painless and we were pleased to find that we only had to pay a $150 co pay (I love working for Mary Kay, Inc.). After check-in Krista decided to walk laps around the waiting room to make sure she got her exercise in for the day. She wasn’t about to let her three year exercise streak be broken by having brain surgery. At 8:00 am Krista was finally wheeled into the OR. Her nurse told me that it would be about 6 hours before I would see her again and she directed me to the waiting room where I settled down for the long wait. This turned out to be the longest 6 hours I have ever endured. The staff at the waiting room were very nice and made sure that I knew where everything was and that there wasn’t anything that I needed but I couldn’t keep from worrying about Krista. Every once in a while I would get a call from the nurse assisting the procedure. She would keep me updated on how the procedure was going and how Krista was doing. After a while Krista’s parents came to wait with me. After 4 hours of waiting the Ashurts came to see how things were going and then the calls started. A constant barrage of friends, family and coworker called to see how things were going and if I knew the results of the initial biopsy. I could only tell them the information that the nurse told me. It was very heart warming to see how many people were concerned about Krista. Finally at 3:00 pm the doctor came to see me in the waiting room. The tumor was successfully removed but the initial biopsy showed that it was malignant. My mind went numb at the news. This means that Krista will have to endure chemo and radiation therapy in an attempt to fully destroy the cancer that possible is still in her brain. It hurt so bad knowing that my wife of 17 years and best friend for over 22 years had cancer. The doctor was optimistic about the fact that visually the tumor was completely removed and that it was smaller that a walnut. He told me most malignant brain tumors are the size of a small peach. Yet the fact that it was cancerous overshadowed the good news. Then Krista’s mom, with tears flowing down her face, gave me a hug, I couldn’t help having a good cry with her. Then the hard part started. I had a list of people to call and tell them how the surgery went. Telling people the bad news was harder than hearing it. I made call after call, while trying to hold back the tears, telling friends and family the results of the biopsy.
I was finally able to see Krista at about 6:00 pm. She was very groggy from having been under anesthesia for several hours. She hadn’t heard what the results of the biopsy were and asked me as soon as she knew I was there. When I told her of the results she looked at me softly said “I have cancer in my brain”. Hearing her say that broke my heart. I would gladly change places with her if it were anyway possible. But I know that God has a plan for us and for some reason it includes this new trial. I don’t know how it will end but I know that with help and support we will eventually get through it. Krista will remain at the hospital until Thursday December 16th. If anyone would like to contact her she is at:

Medical Center of Plano
3901 West 15th Street
Plano, TX 75075
(972) 569-6800

I would like to thank everyone that has offered help, support and prayers. They have been and continue to be a comfort to us at this time of our lives.

Jared

Till Next Time

I report for surgery in nine hours. I look forward to "blogging" again as soon as possible. Perhaps my super-keeper husband will post an update as soon as he can after my surgery.

Thanks to everyone for the loving thoughts, prayers, and kind service. Your faith has strengthened my faith, and your charity has lifted my burdens as I anticipate becoming a human Jack-o'lantern.

Love and ((((HUGS)))) to all!

Krista

Counting Down

I had my type and screen blood work done yesterday. I also checked to see if the hospital received the EKG and chest x-ray that had been done in the ER at another hospital last month, because they need those records as part of the pre-op testing. Unfortunately, something got lost in the cracks, so I had to go to the other hospital and stand there, waiting for them to make me a copy of my records, so that I could hand-deliver them to the hospital where my surgery was taking place. As I left that hospital with all the checklist items checked, it occurred to me that I had taken another step toward actually having this procedure done. It made it real. It made it kind of scary.

My husband had a similar experience. He left the office yesterday, knowing it was his last day for several weeks. He also felt that countdown feeling, like we were getting closer and closer to this critical moment. It's a sobering feeling.

I am afraid. It seems odd, since I have had a general sense of overwhelming peace and comfort, like everything will be okay. I have complete trust in the Lord's will. And yet I have some fear. I think the reason is that I am dreadfully anticipating the unpleasant parts of this process. I am reminded (and PLEASE don't think I am trying to make a blasphemous comparison here) of how Jesus Christ had such perfect faith in his Father's will, yet asked to let the cup pass "if Thou wilt". It sounds like there may have been a complete understanding that all would ultimately be well, but also that there was a difficult path through the process. This is what I relate my experience to (again - in a non-blasphemous way!). I know that the Lord's will is ultimately right and good, yet I know that I am not exempt from fear, pain, and all the other stuff that mortality throws our way sometimes. So I am anticipating moments of pain, fear, and stress, and I have a natural feeling of dread about them.

I am afraid of waking up and feeling pain. The emergence from surgical anesthesia is never pleasant, and there is typically a feeling of disorientation. When there is also pain, that can be scary. Also, in past surgeries I was anxiously asking my husband about the outcome before my eyes were even open. I have a feeling that I will be desperate to know the verdict - benign or malignant - and combined with the disorientation and pain, this seems to be a nightmarish thing to wake up to. And, of course, if the news is bad, there will be the additional devastation on top of everything else. It is this waking moment that scares me more than anything - even more than the idea of dying during surgery. But we are to endure all things, and I am sure that despite being scary and hard and horrible, I will somehow endure it. I am being sustained by the faith and prayers and love of many. I think they will help me through this.

Today has been a day of tying up loose ends where possible, trying to get the house in order, and doing everything else that is needful to prepare for surgery and the long recovery process. I told my husband to make sure our son knows what a joy he is to me. I hope he also tells our daughter about the inspired process that brought her to our family. I hope everyone in my family knows of my love for them, and knows of my testimony of faith. I don't mean to sound like I am preparing for the end, but it's like having a will prepared. Hope you don't need to use it anytime soon, but it's good to have around so you don't have to worry.

Almost Makes Me Glad to Have a Tumor

I know I mentioned it in an earlier post, but we have received several meals this week and last week from the kind women in our church. They will continue next week and probably in the weeks to follow. Plus volunteers for childcare, driving, and all other kinds of service.

Today's meal was just like the others - INCREDIBLE! We obviously have some culinary goddesses in our congregation! Our family sits around the table and goes, "YUM! YUM!! YUUUUUUUUUUUUUUUUUUUUUM!!!!!" as we eat these amazing creations that have been so generously donated to our family. I mean, I'm no schlock in the kitchen myself, but I think each of these dinners would easily rival my best work.

It almost makes me glad to have a brain tumor!

Out of the Mouths of Babes

Cute kid story # 1: My niece, Madison, (age 6) had overheard her parents talking about a family fast that was going to be held this past Sunday on my behalf. As my brother tucked her in, she said, "We're going to fast for Krista tomorrow?" My brother explained to his daughter that he would, but she was too young to have to worry about it. She looked at him and said, "I'd like to try." (Awwwwwwwwwwwwwwwwwwwwwwwwww!)

Cute kid story # 2: My son, Jacob (age 4). On Monday evening we decided to tell him about what would be going on. I explained that I had an "owie" in my head that was making me feel sick, and so I would go to the hospital next week so that the doctors could go in and take it out. It would help me feel better. I further explained that I might look funny at first, and have a bandage on my head, and maybe even do silly things, but I would be okay.

Jacob started to cry. I asked him why he was crying and reassured him that I would be okay. He shook his head and said, "You going to crack your head open!" (Regurgitating all the warnings I gave about "don't crack your head open" whenever I caught him rough-housing on his playground or the slippery wood floor in our family room or the stairs. ) I explained that I would NOT crack my head open; that the doctor would go in very very carefully and take out the "owie", then put everything back together again. I also told him that if he wanted to, he could pray for me to get better, and it would help us both feel a lot better. So now each prayer (including prayers on the food) includes a request to "help Mommy get better". (Awwwwwwwwwwwwwwwwwwwwww!)

The Pre-Op

Today was my pre-op appointment at the hospital. Another fun step in the journey.

I was feeling pretty tired, having had FIVE seizures between midnight and 9:30, when I left for my appointment this morning. I talked to my neurologist, who recommended that I up my medication a little bit. (I am to take an extra half tablet each time now). I added the extra half-tab as soon as I got home, and was seizure-free until 6:15 this evening.

The pre-op was comical, as the doctor had ordered an EKG and chest x-ray. The nice nurse at the hospital asked, "Have you ever had these done before?" I replied that I had, just a few weeks ago in the emergency room at another hospital. Next thing I knew, phone calls were flying between the two hospitals, and between the nurse and my doctor's office. Yes, he will accept the ER records, so I don't have to repeat the tests. Just gotta get them on my chart. Somehow. Before Monday.

And so begins the process of trans-hospital exchange of patient records - a process that is now governed by ridiculously insane HIPAA regulations. But hopefully I provided enough paperwork to pass the "thud" test so the ER can share my reports with the other hospital. And hopefully they will recognize the "STAT" designation written all over the request, as time is of the essence. Let us pray.

The pre-op was reduced to the donation of three vials of blood for chemical analysis. And a fun surprise: I get to come back early Friday morning for type & screening blood tests. No, can't do them today, or I will automatically die in surgery. Must be done three days before the surgery. (In my head is the clip from Monty Python's Holy Grail movie, where the scriptures tell them to count to three before they lob the holy handgrenade at the rabbit. "Thou shalt not count to two, except thou shalt then proceed to three. Five is right out.") I'm thinking TYPE - as in what is my blood type? A+. Always has been, always will be. (My mom said it's why I was supposed to be an A+ student.) Will be A+ today, and will be A+ on Friday. I don't know what the SCREEN is for. HIV? Plague? Drugs? Too many cookies? I'm thinking whatever it is, it's probably not going to change between now and Friday. But, hey - I don't make the rules.

Finally, they went through all my pre-op paperwork, including my medical history, my pre-op instructions, the little map of the hospital indicating where I am supposed to show up, the information packet about deep vein thrombosis (which should be entitled, "In Case You Didn't Have Enough to Worry About"), and my all-time favorite: a tutorial on the pain rating scale and how to use it to communicate with the hospital staff about how much pain I am feeling. Owie ow ow. Something I'd rather not think about right now.

This evening we had the second consecutive night of YUUUUUUUUUUUMMMMMMMM!!!!! As in, kind and wonderful ladies from church have been bringing over meals that have been incredible. I mean, I love to cook, but I admit that my favorite food is "anything made by someone else". But this isn't just the "made by someone else" factor. This food has been amazing! We have very happy tummies.

So, anyway - one step closer to Cranie Day. Ew. Ow.

How to exercise in the hospital

I have exercised every day - no exceptions - since December 19, 2002. I have had a strict policy of accepting no excuses other than lying in a hospital bed or being under doctor's orders not to exercise. As a result, I have gone from someone who hated to exercise, to someone who looks forward to it every day. And it's kind of like brushing my teeth - I wouldn't feel right if I went a day without it.

So here we go. Next week I will be in a hospital bed for at least a couple of days, and then I have been ordered by my neurosurgeon not to exercise for 7-10 days thereafter (and only light exercise that doesn't break a sweat for several weeks).

As I am naturally concerned about going this long without a workout, I am considering ways to sneak in some kind of mild physical activity without hurting myself. Some ideas so far:

1. Isometric gluteal contractions while lying in bed (translation: butt clenches). My brother-in-law and I were having a good laugh, picturing this being done to can-can music, just like the Simpsons episode where Homer Simpson fantasizes about flexing his pecs in the mirror.
2. Ankle rotations (good for the cankles).
3. Kegels (I hear the collective groan from those who have been pregnant before).
4. Isometric tummy contractions (as in, quick - hold in my stomach whenever anyone walks in the room).
5. 20 laps around the hospital wing when they test to see whether I can walk.

I realize that these will likely burn the caloric equivalent of 3 tic-tacs, but hey - it's better than nothing!

Seize the Day (again)

I started having seizures again today.

It started with the "smell nightmare" again (see my very first post on this blog to know what I'm talking about). And then earlier this evening I had another full episode (deja vu, sick/near-faint feeling, smell) while feeding my daughter a bottle. It's a horrible feeling. And it left me with a terrible headache afterward.

I had an appointment with my neurologist this afternoon, and mentioned the smell nightmare to him. (The other episode had not happened yet.) He acknowledged that my antiseizure medication may not always prevent these seizures, and if needed, he could add more medication to help me manage the seizures. (May definitely need to do that post-surgery, because lots of seizures are anticipated.) We decided to monitor and keep a log to see how often these are happening prior to surgery.

My super-keeper husband noticed that I was looking very tired at dinner, and has ordered me to bed early. Being overtired can trigger seizures, and I am definitely overtired. He has promised to take care of the kids and the house and stuff tonight. So I agreed to do so, as soon as I "blogged" and exercised.

On to the treadmill I go - hoping not to SEIZE the treadmill!

...p.s. - 10:00 p.m., after exercise & taking meds, and while preparing for bed - another seizure.

Top ten theories: why I have a tumor

Based on input from family and friends:

10. Those darn cell phones
9. Bad acne gone awry
8. All those fertility drugs I took a few years ago
7. God's way of making me less of a control freak
6. Life's irony - after all, I have a degree in psychology because I was always fascinated with the brain, and my grade school science fair project was all about the brain (and featured a pickled dog brain in a jar as a prop)
5. A life experience to help me serve others in the future (we joked about how I formed an infertility support group called "2ofus4now", and so now I can make a tumor support group called "tumor4usnow")
4. Stress, stress, and more stress
3. I inherited my grandma's sister's brain "cysts", which she had surgically removed, and still lived to be 97 years old
2. The repeated olfactory assault from my daughter's diapers (causing me to have smell hallucinations as a defense mechanism)
1. Because I hold in my sneezes instead of spraying everyone (my personal favorite, theorized by my mom and my brother, Mike)

Feeling the love

They say that when times get tough, you find out who your real friends are. Well, all I can say is "WOW - I have a lot of real friends!"

Ever since the news got out about my "situation", I have had a constant stream of emails, telephone calls, hugs, and offers of prayers and other helps. People have literally begged me for opportunties to be of service. It has been an incredible response - one that I do not feel even remotely worthy to receive. But I am very grateful.

This post is to simply say, "Thank You" to the many people who have shared their love and support in a myriad of ways. It helps me more than you will ever know.

I have a date...

...and a new vocabulary word: "Cranie". As in, "She's going in for a cranie." (What the nurse said to the hospital when scheduling the surgery.) It's short for craniotomy. Cranio = the brain, and tomy = to cut. They will cut my brain. Ew. Ow.

Monday, December 12 is the date of my surgery. BARELY the 12th - I have to be there at 5:30 a.m., so it's practically still Sunday the 11th. Surgery is at 7:30. And we go forward from there. It gives me some time to try and wrap up work projects, home projects, Christmas preparations, etc., and yet gives me enough recovery time to be basically functional in time for Christmas Day.

Today's comments about my prognosis: if benign, I could live "decades and decades". If malignant, more like about 5-10 years for a lower category; 1-5 years for a higher category.

I also learned today that recurrence of the tumor is more of a matter of WHEN than an IF. I will have routine MRI scans to check for regrowth. Depending on whether it is malignant or not, it could be every few months or up to every six months. FOR-EVVVV-ER.

I also learned that I will get fat over the holidays (not that I wouldn't have anyway). They will put me on steroids for a week post-op, and he admitted that steroids do cause weight gain. Also, the surgeon said I was not allowed to exercise for 7-10 days afterward (breaking my three-year streak) and then I can only resume light walking for a few weeks after that. I think I gained a pound just listening to this. BUT - there is some hope. For example, I also learned that my jaw will be sore afterward, because the muscles that control the jaw will be traumatized by the incision, and so chewing will be painful. So hey - I may not want to eat! And okay, it may not be much, but the tumor that comes out has got to weigh SOMETHING, right?

I asked more about the memory impact. He said it won't affect stored memory so much (as in, I will still remember my wedding day), but new information will be hard to hang onto. He actually asked me - and I am not kidding about this - "You know that old Saturday Night Live skit about Mr. Short-term Memory?" There's a comforting thought.

I asked what he does about the space left behind by the tumor? Does the brain just squish together and become solid again? Does he fill it with putty? No, they leave a hole. A nice little hole, which incidentally lets the next tumor (!) have a place to go to prevent damage.

I also learned that VECTOR VISION is super-cool. He talked about a patient whose tumor was wrapped around an artery in her brain, and he had to get it all out without nicking the artery. Thanks to VECTOR VISION, he was able to do that. I am glad to know that he is able to work with such precision.

We talked risks and benefits, so I could sign the informed consent forms. Risks: death, coma, bleeding, loss of bladder/bowel/sexual function (so, basically, "wish you were dead"), personality change, neurological deficit, memory loss, failure to completely get it all out, recurrence of tumor, and all the good stuff that goes along with these things. I asked specifically about musical ability, because the right side of the brain is where musical ability comes from. I want to be able to sing and direct music like I do now. He said that they would be going into the lower part of the lobe, and the musical ability stuff tends to happen in the upper part. So while it is still at risk of being affected, they would try to prevent that. Benefits: getting the tumor out and finding out whether it is cancerous. And hopefully being responsible for bringing back the Cindy Lauper hairstyle as a fashion trend.

I found myself feeling very nervous as I went into my appointment. My husband came with me and held my hand through the whole thing (as I said before, he's a keeper). Yet, coming out of the appointment, even after hearing some harsh realities that are sobering, I felt better than I did going in. I still think I will be okay. I feel at ease putting this in the Lord's hands. I am not looking forward to what will be a difficult process, but as with most trials in life, you have to go THROUGH them (can't go around them). So I will go through this. I will not like the "through" part much. But it will be okay.

Why I hate country-western music

I realize that in the State of Texas, it is something you can be shot for, but I cannot stand country-western music. I do like bluegrass music, because of my past life as a clogger. But that's where the love ends, and I'll tell you the latest reason why.

I was in the store yesterday, and they were playing Christmas music (LOOOOVE Christmas music & glad they were even acknowledging Christmas instead of "RamaHanaKwanzMas" or "Generic Winter Season Greeting"). This was fine until I was assaulted by some sap-ola country-western singer going on about a little boy trying to buy shoes for his sick mom on Christmas Eve, and how he had to hurry because Daddy says there isn't much time, and he wants his mom to look beautiful "when she meets Jesus tonight".

Sap-sap-sap-sappy. Now, of course, any mommy/little boy song is going to make me think of my own little boy and tug at my heart, and the obvious relevance this year of going in for brain surgery sometime before Christmas was no help. So yes - I was crying like a fool in the middle of the store. But PLEASE! I went home and told my husband that if I were dying on Christmas Eve, please do not be an idiot and send my boy shoe shopping during my final hours. He should be HOME, where I can hug him until I take that last breath. And come on - since when does Jesus care what kind of shoes you wear? I'm thinking the shoes don't actually go with you when you die. (And by the way - no one sees them in the casket either! Bring on the comfy fuzzy slippers!) Sounds like this little boy and his family need to be spending more time reading the Sermon on the Mount (as in "lay not up for yourself treasures...") than picking through the Manolo's while one of their own is quickly going through the sand in her hourglass.

Anyway...one redeeming thing about rap music is that you probably won't get a sap-ola song like this. Of course, you might get one where the little boy shoots his mom on Christmas Eve when she won't buy him the shoes HE wants - and okay, that's not good, either. I'm sticking with the Carpenter's Christmas Album and the Mormon Tab Choir!

What I want to remember and what I want to forget

I keep mulling over the neurosurgeon's comment that my memory may be affected by this surgery. It is a sobering thought.

Here are a few things I want to remember (in no particular order):

• My family members & friends
• My dog (and especially to FEED my dog)
• All the reasons why I fell in love with my husband
• What it felt like to hold my children the first time
• All the funny things my children have done (yes, Mom - I hear you saying, "I TOLD you to write all that stuff down when it happened!")
• How to sing
• How to clog dance (not that I do it very often, but it's kind of cool, albeit harsh on the knees)
• My clients and what I am supposed to be doing for them
• The lessons I have learned from past adversity (self-imposed and life-imposed)
• Where I hid the Christmas presents
• My passwords for email and phone
• When to pay the bills online
• Important dates, like birthdays and anniversaries
• Why I NEVER pump gas (simple reason: I never have, so why start now?)
• How to get my daughter to fall asleep when she's overtired
• All the silly "I love you" games I do with my son (like the kiss "pump spray", the "I super duper shmooper scooper flooper mooper - etc. - love you", and stuff like that).
• Who is on the phone when they shout "WHAT?!!!" as their greeting (my brother, Jim).
• My obsession with daily exercise (started nearly 3 years ago and will only allow doctor-ordered bedrest or brain surgery ICU recovery as excuses not to exercise)
• How to make my favorite foods
• What I gave people as gifts, so I don't give the same thing again
• The fact that I am allergic to pennicillin
• How horrifying my "fat jeans" are, and how much I want to get back into my "skinny jeans"

Things I'd like to forget:

• Stupid mistakes (except for the lessons learned)
• Embarrassing moments
• What it feels like to wake up from brain surgery
• Anything that makes me wake up in the middle of the night to worry about
• How much money I spent on Black Friday
• Painful experiences (except for the lessons learned)
• How much I like cookies

I'm sure both lists will grow, but at least it's a start...

Buy lots of Mary Kay stuff

My husband works for Mary Kay. He doesn't sell the stuff, so no - he can't earn a pink Cadillac. He is a senior computer geek in their IT department and works miracles for their website.

Mary Kay is a great company. They believe in God First, Family Second, Job Third, and they really practice what they believe. We have seen many examples of these values being practiced throughout my husband's four-plus years with the company, and we are gratefully seeing yet another example.

My husband's boss sat down with him today to review the paid leave that would be available during my surgery and recovery. Between accrued vacation and family leave time, there is plenty. Plus, he added, the company would be "very flexible" with regard to working from home, if needed. Basically, the message my husband got was that he should do what he needs to do for his family, and they would figure out how to make it work. It was very reassuring.

SO - buy lots of Mary Kay stuff. Keep that company prosperous! They are good to their people, and deserve to be around for a long, long time.

Question for the Day

I just downed a very tall, very cold glass of milk in order to wash down my medication. The result was a brain freeze like I hadn't had in a long time.

So naturally, the question went through my mind - does brain freeze also cause tumor freeze? Can I ward off seizures by eating ice cream too fast?

(Just kidding - I know the answer, but it was fun to think about for a moment!)

My Cup Runneth Over

The 23rd Psalm contains the following statement:

Thou preparest a table for me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

We sing the hymn, "The Lord is My Shepherd", which has a slight variation:

In the midst of affliction, my table is spread
With blessings unmeasured; my cup runneth o'er.

I have found that throughout my life, when I have been in the midst of affliction, my table really has been spread with blessings unmeasured. When I choose to look for them, I am always astonished at the more-than-compensatory blessings that have surrounded me during times of deepest trial. As though the Lord is saying that he cannot remove this necessary experience, but he can let me know that I am loved and watched over, nonetheless.

For example, right now my cup runneth over with an outpouring of love and help from family members, church members, and friends. Word of my situation has spread quickly, and I have been overwhelmed (and very grateful) for the many kind words and offers of prayers and other helps throughout this process. One very significant blessing was the realization that my visiting teacher (one of the women in our church assigned to have a stewardship over me) is a 9-year survivor of a brain tumor herself. It helped so much to talk to her today.

I have much to be thankful for. I have the gospel of Jesus Christ, and the gift of the Holy Ghost to provide a constant comfort to me. I have a loving family. I have friends who generously give more than they receive. I have access to competent professionals who know how to help me. I have a huge list of blessings that I could continue with, but I would not be able to complete it in the time and space that I wish to devote to this post.

The other day I noticed a billboard on the side of the road that said, "Wanna get rich quick? Count your blessings." I can only begin to count my blessings, because they appear to be innumerable. But to be sure, I am a rich woman in this regard. My cup runneth over.

Black Friday and VECTOR VISION

Black Friday is a family tradition. You know, that day after Thanksgiving when they have the doorbuster deals starting very early in the morning?

It began Thursday evening as I browsed through the circulars in the newspaper. Not being a newspaper subscriber, I sent Jared out to forage for a paper in a nearby machine, convenience store - whatever. After a long search, he finally came home with a paper in hand. Everyone had sold out of papers early that morning, but he noticed that a Firestone station (which was closed) had a paper sitting by the front door. Obviously it had been delivered, but no one had been at the station to pick it up. Jared took $3 from his pocket and put it with a note, saying that it was for the newspaper, and dropped it into the night drop slot before bringing the paper home. (There are many reasons why my husband is a keeper, and this is one of them.)

After a thorough scan of the ads, I decided that WalMart was the place to attack. Gotta get a $25 bicycle for my son and another one for the angel tree child that we are sponsoring this year. Left the house at 4 am and stood quivering by the pallet of bicycles until the clock struck the magical hour of 5:00.

One hour and an undisclosed but obscene insult to the American Express card later (didn't just stop at the bikes), my dad/shopping buddy and I were ready to go home. Normally I would be ready to hop to the next adventure, but: 1) my antiseizure meds make me tired; and 2) I have an 8:30 MRI appointment.

This MRI is something special - it has VECTOR VISION! (Is this like Wonka Vision, or will I become some kind of superhero now?) As I understand it, this becomes part of a helpful computer-aided tool during my surgery to help the surgeon know what is brain and what is tumor. This facilitates great accuracy, which is something I value as a future brain surgery patient.

Having had an MRI the week before, I figured I was a seasoned pro. However, not all MRI facilities are the same. My first MRI was at a facility that really had the comfort thing down. After all, MRI's are not the most enjoyable experience, unless of course you really fantasize about living the life of toothpaste crammed in a tube that someone left lying on a runway where jet engines are taking off. But MRI place #1 was a tranquil office with waterfalls and a matronly assistant who saw to my every comfort, and even the comfort of my supportive husband in the waiting area. The technician talked me through every detail before proceeding. He placed headphones on my head and let me choose my favorite type of music. He put me in a halo with an angled mirror in front of my face, so when I looked straight ahead I could see out the tube. And he placed a "panic ball" in my hand, where I could eject myself at any time. Then he slid me into the tube just to my shoulders and paused while I had my "oh, dang, this is claustrophobic" moment. Once I adjusted, he proceeded until I was in up to my elbows. He described every sound that was coming, and let me know how long each picture was going to take. It wasn't fun, but it was much more tolerable than I expected it to be.

MRI #2 was different. It was at the hospital where my surgery will be taking place. No matronly assistant (although the radiology receptionist was very nice). No plasma screen TV on the waiting room wall with my choice of channels. No offers of drinks or other comforts. The technician calls me back, injects the contrast media, and tells me it should only be about 10 minutes or so. He sticks earplugs in my ears (I guess this means no music), puts my halo on (with the angled mirror again, thank goodness), and rolls me right in up to my knees. No warning - just "try not to move or swallow". (FYI - this will make you want to swallow like crazy!) Luckily I was so exhausted from the early morning shopping that I took the opportunity to nap despite the jet engine noises blasting around me.

So now I have an MRI with VECTOR VISION. Another step toward my treatment. I meet with the neurosurgeon on Thursday to get things set up for my surgery.

Meeting the Neurosurgeon

Today I met with the neurosurgeon. "Yep, looks like some kind of 'glioma'" (another vocabulary word).

Definitely wants to take it out. No, a needle biopsy is not the way to go with this one. Open surgery to remove and biopsy the tumor.

I'm right-handed, which is good. The tumor is in the right temporal lobe, so removing it won't affect my speech or other things controlled by my left brain. But it may affect my memory. (Dangit! Should have kept a better journal!)

They have cool tools to help them be very precise in removing the tumor and minimizing trauma to the rest of the brain. They will do a quick screen of the tissue during surgery, and if there is evidence of malignancy they will put a chemotherapy wafer in my brain before they close it up. Chemo wafer is supposedly better than IV chemotherapy - fewer side effects.

Yes, it does appear to be primary. Yes, they rarely spread beyond the brain. But they can spread within the brain, and that can be bad. So we are hoping that doesn't happen.

Surgery is about 5-6 hours from the family's perspective (from kiss good-bye) and about 3 hours from the incision time. Recovery in the hospital is about 48 hours (first day in ICU, next day in regular bed), and then recovery at home is a couple of weeks. (Note to self: get Christmas shopping done early!!!) There is obviously a lot of pain expected, as they will be making a hole in my skull and digging stuff out of my brain.

I asked the ever-important question about my new highlights, and he said that they will need to shave a good chunk from the side of my head. But since my hair is long, I may be able to hide the spot.

Next steps: another MRI (I pretend I am in astronaut training or something), and an appointment next week to plan the surgery.

I Have a Brain Tumor

It's okay - probably/hopefully - but I have a brain "abnormality" that the neurologist believes is most likely a tumor. Saw it myself as clear as can be on the MRI films. (Guess what? MRI is much more sensitive than a C-T scan, which is why the C-T scan in the ER came back normal. Lesson for the day.)

It's a little more than half the size of my eyeball, in the temporal lobe (which explains the sensations I have been experiencing during seizures). The EEG showed definite seizure activity in the brain, most probably caused by this "abnormality".

Next steps - I have an appointment with a very highly recommended neurosurgeon on Wednesday morning. Although he normally takes months to get into, my neurologist worked his magical influence to get me an appointment before Thanksgiving. He said this is so I can have time to make plans over the holidays, and not because of any urgency relating to the condition. (Trying really hard to believe that...) The neurosurgeon will likely schedule surgery to biopsy (and hopefully just go ahead and remove) the tumor, and we'll see where we go from there. I am still digesting this news, which is somewhat overwhelming, and while I am understandably emotional and feeling quite violated by the presence of this foreign growth in my head, here are some things that are reassuring to me:

1. Based on its appearance, I am told that it is likely to be a "primary" growth, meaning that it probably started in the brain instead of having spread to the brain from some other cancerous source. They may still want to do an organ scan on me, but it's not a major concern at this point.
2. As a rule, tumors in the brain tend to stay in the brain, so at this time there is not a concern that this will quickly spread somewhere else.
3. The location of the abnormality is surgically accessible. The neurologist confirmed this without hesitation.

All in all, the information I have right now makes me think that this is probably (hopefully) not life-threatening, but it is serious and needs to be taken care of. So we are taking care of it. Once the tumor is gone, I will still likely need to stay on antiseizure medication for the rest of my life, which is not my favorite news, as the medication makes me really tired. The doctor said it may get better as my body gets used to it, and we may play with different dosages to help make it more tolerable. But the temporal lobe of the brain is more epileptogenic (vocabulary word of the day) than other parts, and so will likely continue to be seizure prone despite removing the tumor.

So, naturally, after going through all this information, the next very important question I had for the doctor was whether I should keep my haircut and highlight appointment for tomorrow afternoon, or whether it would be a waste of money if I am having my head shaved soon anyway. (We all know our priorities, right?) He said that the way they will probably do it, they won't likely shave me completely bald, so I think I am safe in keeping my appointment!

SEIZE the day

It started with what I call "smell nightmares". Every so often I would awaken in the wee hours of the morning smelling a distinct chemical smell and feeling like I was having a nightmare (except with no memory of a nightmare). My brother later teasingly commented, "Well, you know, with Jared next to you, smelling an unusual smell shouldn't be that surprising!" (Waiting a few moments for Jared to mentally punch my brother!) But it was a weird smell that I can't describe very well. Kind of like cookies, but more chemical-like. Strong enough to make my nose sting and my stomach feel sick.

I don't remember when they started. Maybe a few months ago. Then on a Sunday morning not too long ago, I was getting my daughter ready for church and I suddenly felt very ill, like I was going to faint. I sat down to compose myself, and the smell was there again. I had also had a deja vu type of feeling right before it happened.

After about a minute, the feeling passed, and I was okay for the rest of the day, albeit a little icky feeling and nervous. I called my brother that evening (the one who joked about my husband and the smell) because he is a dermatology resident and the designated person in our family to abuse with requests for free medical advice. He said I should see my doctor, commenting that "maybe you have a brain tumor".

Monday and Tuesday passed without event. I even ran on my treadmill without any problems. I figured it was just one of those things. Maybe an anemia thing, since I am prone to being anemic. They hate that at the bloodmobile when I try to donate.

On Wednesday I had several "episodes" - deja vu, then sick feeling/near faint, then smell - including one while driving. That was scary. After the third episode my husband came home to take me to the emergency room. I had another one on the way there, so he was able to observe me. I never lost consciousness, and was even able to describe what was happening while it was happening.

In the ER they did an ECG, chest x-ray, and C-T scan, all of which came back normal. Bloodwork was also normal. The ER doctor said that it sounded kind of like a seizure, but since I was lucid throughout the episode, and since the C-T scan was normal, he figured it wasn't a seizure. My brother said they should have done an EEG, but they didn't. They sent me home with a big question mark on my forehead. I had another episode that night, and several more in the following days.

On Friday I met with my primary care doctor, who suggested a Holter monitor screening (for possible arrhythmias not detected by ECG) and referred me to a neurologist for an EEG. He didn't think it was seizures either, but thought it would be prudent to check anyway.

The neurologist listened to my description of events, and said, "Sounds like you're having seizures." So much so, that he sent me home with samples of antiseizure medication to hang onto, pending the EEG results. He ordered an EEG and an MRI, which (miraculously) were both accessible that day.

On Saturday night the neurologist called and said to start taking the antiseizure medication, even though he was having some computer problems to prevent seeing the results of my testing.

On Monday morning he called me again. Even though I had a follow-up appointment scheduled for Tuesday, he asked if I could come in that day. He would fit me in somehow. Wanted to talk about my MRI results. I knew this couldn't be good news. Later, his nurse called me to say that she had cancelled the Holter monitor appointment with my primary care doctor. I knew the culprit had been found.

My husband came with me to the neurologist's office, and held my hand while the doctor told me the news. EEG showed definite seizure activity, most likely due to the "abnormality" that could be clearly seen on the MRI film.