Be Careful How You Interpret the World

“Be careful how you interpret the world: It is like that.” -Erich Heller

I came across this quote and it has been stuck in my mind.

 In my world, there are scans, tumor growth, the chloroplast mask, the radiation. It’s easy to live with a “poor me” mentality but that is over. I have decided that it is “BLESSED me.”

Thank you, Lord, for medical technology!

I am lucky! I have a benign tumor. There is a treatment for my tumor. There is an 85% chance that treatment will be effective. If my vision is altered in one eye, I have another fully functional eye. The side effects to the Cyberknife treatments are typically very tolerable. The Barrows, where I will receive my treatment, is one of the leading neuro treatment centers in the world.

I have so much to be thankful for. That is how I will interpret the world.

My treatment dates are scheduled for July 11, 12, 13, 16 &17. The plan could change after further mapping of the brain is completed, but for now I will do three days on, have the weekend off (in an attempt to preserve the optic nerve) and then complete treatment that Monday and Tuesday.

Will you pray that I remain mentally strong and that I can focus on the positive and not the negative in my current situation? As I journey along this path, I would ask for prayer that the doctors involved would be flawless, that I would tolerate treatment well, and that the treatment would be successful. Thank you.

My Treatment Is Moving Forward

Another week passes and things are moving forward with my treatment. While at lunch yesterday, I received a phone call from my radiation oncology office. They were calling to schedule my MRI, CT-Scan, and chloroplast mask molding (all the prep-work for my Cyberknife procedure). So, with an upbeat, chipper voice, I thanked the scheduler for getting me in so quickly. Monday at 6:50 a.m. works for me!

Holy cow! One minute I’m enjoying Chipotle with my sister, the next minute my head is spinning with thoughts of the early-morning check-in to the hospital and getting hooked up to an IV. I knew this was coming, of course, and in the big scope of my life, these are truly benign events. I am thankful that Monday’s appointments will be simple. I have been through all of this before, with the exception of the lovely new mask they’re making. These procedures are really not the end of the world.

And then, in a flash, it DOES feel like it’s the end of the world! Like lightning flashing, my mind quickly strikes to a not-so-positive place. There is fear, anxiety, laser beams to my head and tears. “I want this to end!” I mentally plead. “Can’t someone make it all go away??” I hear my doctor’s words from the last appointment: “Your tumor is growing back,” and “we must act quickly.”

When did this become my life?!

I’m striving to maintain the perspective that it will all be OK. There is, after all, an 85% chance that this treatment will be effective. We will not know for 6-12 months, but the odds are in my favor. And although this entire process has come with some ups and downs, there is an enormous blessing that I have received; it’s called humility, perspective and dependence. Without this trial in my life, I would not be where I am spiritually. Now, I wake up every morning feeling thankful for my vision and immensely thankful for my God. I am thankful that He saved me three years ago when the prognosis was grim. I am thankful that I have a friend in Jesus and that while I am being wheeled around the hospital on Monday, He will be right there with me. Clearly, the blessings outweigh the difficulties. The Lord will carry me through this.

As I walk through this, can I ask that you would keep me in your prayers? Sometimes all of this is so overwhelming that I don’t even know what I need or what I need to pray for, so I’m closing with this verse. Even if you aren’t sure what to pray, I am thankful that God knows what I need.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches out hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will.” Romans 8:26-27

Update

Few times in my life have I felt as though I were in the true presence of greatness: extreme excellence you can see and hear in every word. Dr. Youssef is one of those people.

He is caring, communicative and brilliant. And he is heading up the plan moving forward for my treatment.

I knew I wasn’t getting the news I’d been hoping for when the nurse lightly knocked on our door and introduced herself with a video in hand that the Dr. requested Rex and I watch. He had reviewed my MRI’s from the past three years and before he met with us, he requested we watch the “Cyberknife” video. My stomach churned as we viewed the short video. I’m not certain I comprehended all that was said as my body went into some sort of shock, but there was detailed footage of a patient undergoing the procedure, so I got the drift.

As it turns out, Cyberknife is the best option for my case. I could feel the disappointment in Dr. Youssef’s voice. He was concerned that I had not been referred to him for radiation sooner. He explained that we have limited time to radiate the tumor without radiating the optic nerve. He explained that the sooner we treat, the better. I have now been referred to a neuro-opthamalogist and a second neurosurgeon, have a scrip for an MRI and have plans for a mask to be molded to my face for the procedure. Can you say…overload??

Dr Y would like all of this to take place in the next few weeks so we can begin the 3-5 day Cyberknife procedure. The procedure will be 30-60 minutes a day, for 3-5 days. These variables will not be decided upon until the detailed MRI is read. There are risks of headache, lethargy and a small increased risk of cancer, which are all acceptable risks to take in order to avoid another brain surgery.

I am so blessed to be not only in the care of the one great physician, God, but also an entire team of incredible physicians. This is a non-invasive procedure. I should tolerate it fine. I am thankful that a benign tumor is my problem and not something worse.

While I am mostly calm and good to go, the strong waves of unsettledness arise with no warning or respect for where I am or what I am doing. My poor Starbucks barista! I instantly fall away from positive and logical reasoning and into pity-party mode, accompanied by tears. “This cannot be happening! I want this to be over! Why can’t this end? What if they nick the wrong area in my brain?” I could go on and on.

Psalm 27:1 “The Lord is my light and my salvation. Whom shall I fear? The Lord is the stronghold of my life, of whom shall I be afraid?”

Fear is a dark cloud in our lives. It envelopes us and cages our soul to sit in loneliness. We have all experienced fear at some time in our lives- fear of rejection, misunderstanding, uncertainty, sickness, possibly even death. We can conquer fear. If we choose to rely on the Lord, we can dispel the strongholds of fear. We have to focus on the “Lord being our light and salvation,” just as the Psalmist says.

Will you pray for me? Pray for my anxiety and fear to be absent and for the doctors involved in my case to be flawless in their work. Also pray that I would tolerate the treatment well, and that the long-term results would be the tumor shrinking or (at minimum) no additional growth. I appreciate all of your encouragement, support, friendships and especially your prayers, more than you will ever know.

 

Ignoring reality does not make it go away

Frustration looms. I have written numerous posts over the past few months and never felt it was quite right for publishing, and now I am on the eve of a big appointment and wish I had shared with other people sooner.

As it turns out, ignoring reality does not make it go away.

For months now, I have known about my appointment tomorrow, and decided not to think about it because it was so far away. Now it is tomorrow and I am not settled with the potential outcome.

I have been referred to a radiation oncologist. My tumor has not grown large, but has become dense. My neurosurgeon referred me out to see if it is indeed time for radiation. All I could think was, "Really? Really??" I passionately desire for this to be over and for a wellness card to be sent to my address stating that everything is good.

Until that happens, I’m asking you all for prayer. Pray that I will be strong and that the doctors will have wisdom, knowledge and experience on their side while treating me.

Will you pray that whatever they recommend, I will have peace about it?

Jeremiah 29: 11 states, “For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”

“We’re all encouraged by a leader who stirs us to move ahead, someone who believes we can do the task he has given us all the way. God is that kind of leader. He knows the future, and his plans for us are good and full of hope. As long as God, who knows the future, provides our agenda and goes with us as we fulfill his mission, we can have boundless hope. This does not mean that we will be spared pain, suffering or hardship, but that God will see us through to a glorious conclusion. “ Life Application Study Bible, Zondervan.

It could be a benign appointment. The possibility exists of doing treatment immediately, as well as the possibility of doing it at a later date. Tomorrow I will hear the recommendation.

Awaiting my glorious conclusion-
 

Living In The Sunlight

“Do not anticipate trouble, or worry about what may never happen.

Keep in the sunlight.” –Benjamin Franklin

We’ve all been there. There is a long overdue phone call. The days pass and the guilt increases. It starts out as a quick call to touch base, update a friend on your life or hear of a friend’s journey. Eventually reality sets in: the call will really require an hour or more because so much has transpired in the meantime. It can leave you feeling heavy and unsettled with regret. By the time you finally have the opportunity to call, you are full of apologies and hope your friend understands.

So it is with this long overdue post. My blog has needed some updating. The longer I waited to update, the further I fell behind in my thoughts. But here I am now and I hope you will understand.

Here is the quick catch-up: Going back to the end of 2011, we had a tremendous holiday season filled with smiles, merriment and Santa, of course.



Then Logan recovered well from his broken arm he received in his first go-kart flip.



And just a few weeks ago, Rex and I celebrated our 10 year anniversary. I am just so lucky to be married to him.



One of the biggest defining elements of the last few months started when the New Year set in and we started caring for my father-in-law, David, leaving little time for anything else. Five weeks of this year were spent at a hospital. Rex and I shared the early morning to dinnertime shift.

David was perfectly healthy at Christmas. One week later, we received an urgent call that he had experienced a seizure while in Montana on business. David had a brain tumor. Based on my successful surgical experience at Barrows, the family decided to medi-vac him to Phoenix. He arrived late that evening. He was diagnosed with metastatic malignant melanoma. Emergency neuro surgery was performed and he has been recovering well.

Being involved and caring for David has brought great honor and perspective to my personal journey of neuro-health. I’ve gained a deeper love for my personal journey. When trouble knocked on our family’s doorstep this time, I was able to be a true encourager and advisor in this difficult process. I can hardly fathom that the Lord knew that one day my personal experience with neuro-surgery at Barrows medical center would be helpful with an immediate family member. From long to short-term recovery and follow-up visits, we know the ropes. Experience is a good card to be holding when navigating care for someone you love. I am blessed that I already walked this path nearly three years ago.

As many similarities as David and my experiences have had, there are far more differences. My tumor was benign. His is not. Mine is very slow growing. His is not. My tumor was not in the inner workings of my brain. His is.

Before, I was put off by my surgeon’s ‘no big deal’ attitude toward my tumor. Now I understand: I am best-case scenario.

This certainly doesn’t mean my road to neuro care is over. As long as I am alive, neuro follow-ups will be a part of my life. But as it stands, problems that could arise with my tumor can be remedied. I am lucky.

And so, I have also adopted a mode of living in regards to my tumor growth.

“Drag your thoughts away from your troubles...

by the ears, by the heels,

or any other way you can manage it.” –Mark Twain

As Mark Twain said it, no matter what, I’m not going to focus on what might be. I’m not going to think about it. My tumor is what it is. For now, I’ve been told ‘Go live your life’ and so I am. There are still days of pain and weird vision issues, but they are few and far between. Besides, I have Vicodin for those days, so why worry? I’m not suffering.

King Solomon wrote in Ecclesiastes 8: 15

“So I commend the enjoyment of life,

because nothing is better for a man under the sun than to

eat and drink and be glad.

Then joy will accompany him in his work all the days of the life God has given him under the sun.”

Solomon is giving the remedy for life’s unanswered questions. He recommends joy and contentment as encouragement along life’s highway. We must accept each day with its daily dose of work, food and pleasure. If we can learn to enjoy the things the Lord has blessed us with on a daily basis, it strengthens us and we can focus on happiness rather than the uncertain things in life.

Albert Einstein said it well:

“Learn from yesterday, live for today, hope for tomorrow.”

So, really, life has been simplified for me. I am living each day fully, enjoying life and our family. If my tumor has grown, and they recommend some sort of treatment, I will worry about it then. For now, I am well.

And that brings us to the present. I am going in tomorrow for my follow-up tests. I am surprisingly calm. The days proceeding testing are typically filled with anxiety. However, my perspective has grown more with the blessing of partaking in my father-in-law’s care.

Tomorrow is a long afternoon of testing. I have a CT-scan of the brain at the hospital at 1:30 and then I go to another facility for an extra- long MRI at 3:00. The MRI will take a closer look at the dura and the optic nerve. I am confident things will be well.

Will you please pray that my spirit does not deteriorate as the appointment draws closer? Will you also pray that there will be no growth or change detected?

“Do not be anxious for anything, but in everything,

by prayer and petition, with thanksgiving,

present your requests to God.

And the peace of God which transcends all understanding,

will guard your hearts and minds in Christ Jesus.” Philippians 4:6-7

MRI update

{Congrats to Robin S., the winner of the Starbucks gift card from my previous post!}

“It’ll be ok. It’s probably not that big of a deal. It’s not even for sure. Every day people hear much worse news than this. Besides, what doesn’t kill you makes you stronger, Chrissy.” That’s what I keep telling myself as I replay the conversation with my neurosurgeon from a week ago.

And for the most part, the lines I feed myself calm me enough to overcome the emotions that are fighting to break loose and cause me to cry like a little girl.

“We’re not sure if this is new, or we just hadn’t seen it before,” he explained as he showed me the MRI of my optic nerve. It is distorted. Not perfect, like the opposing optic nerve. One of the many miracles from my surgery was that the optic nerve was not entwined with the tumor. Consequently, an MRI was never done of that specific region. That is, until a few weeks back, when I went into the tube for an hour and a half instead of the usual 45 minutes. For reasons unbeknownst to me, my neurosurgeon ordered an MRI of the brain and the optic nerve.

And viola, there was something new. Or, as he explained, maybe it wasn’t new and they just hadn’t know it was there.

"Perfect. Now we have two areas to track," I thought. No big deal. It’s nothing two Valium can’t handle for the extended stay in the claustrophobic noise machine.

All joking aside, the doctor seemed concerned. We bumped it up to two MRIs and a CAT scan six months out. We’re going to watch closely to be sure there is no change on the optic nerve, since part of it is gone, or distorted, or something…we just don’t have enough information to be sure at this point.

The largest concern with the optic nerve having something going on is that there cannot be any pressure put on this area by tumor (he didn’t explain why, he just kept saying it). And then he explained that if the tumor grew in the optic nerve, the surgery required would be really bad, the kind of surgery he doesn’t want to do on anyone.

And then he said the word…radiation. It’s not for sure, but he thinks with the new findings, we should begin thinking about radiation. Now that we have a baseline of the optic nerve, in six months tests will be repeated, and off I will go to see a specialist to discuss radiation. He explained that it’s probably a safer avenue to travel and that we need to be doing all we can to avoid surgery in this area. To avoid surgery, the tumor must not grow. In six months, another assessment will be made, but he advised me that at this point, the risks of radiation would be acceptable to avoid surgery.

And so for a week I have been mulling this over in my brain. Emotions are like a bouncy ball. I’m fine, I’m sad, I’m fine, I’m mad, I’m fine, I’m devastated…you get the picture. I know, it’s supposedly not that big of a deal—it’s not cancer. I will make it through it. And it’s not even for sure.

It’s like this. When I went in for surgery the first time, our pastor visited and shared a phrase I have not forgotten. He said, “Any surgery on yourself is major surgery.” Isn’t that the truth? I mean, tonsillectomy, wisdom teeth being removed, appendectomy, C-section…no matter how major or minor, when you’re the patient, they’re all major.

And so a little, a lot, whatever amount it may be…I only have one brain, and radiation is going to be major. I will make it. I will be fine. I was just hoping to be undergoing LESS tests at the two year mark, not more.

Will you please pray with me that there will be absolutely no change in the optic nerve, or the region where the major tumor was? I know my God is a God that answers prayers. I know He hears His people cry out for miracles.

Phil 4:4-7 “Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness to known to all men. The Lord is at hand. Be anxious for nothing but in everything, by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

Flexibility

“I am a man of fixed and unbending principles,

the first of which is to be flexible at all times.” – Everett Dirksen

I distinctly remember sitting in our newly built home as a newlywed, with dinner on the stove growing colder by the second, and Rex still wasn’t on his way home from work. I remember the irritation, the hurt and the frustration I felt. I was flexible enough to try to keep his food warm for a while but when it reached the point that I was risking burning it, my flexibility maxed out. I also remember voicing my frustrations to a mentor in my life. Thankfully, I was blessed with a wise mentor. She spoke firmly, “Chrissy, you have to be flexible in your expectations of Rex and your marriage. He’s out earning a living for you. You just need to be there when he’s available. You can be happy for the time you do have together, or you can make it terrible when he’s home and not enjoy one another. It’s your choice.” Following her advice, I learned to become flexible.

Rex and I formulated a new game plan for dinner: Rex calls when he’s on his way home, whether it’s 5:00, 6:00 or 8:00, and I finish dinner off so it’s ready when he walks in the door. We are now five months shy of our 10 year anniversary and I can tell you, dinnertime is not a source of stress in our marriage. I’ve learned to go with the flow. We’ve found methods that work for us to have peaceful dinners, whether it’s early or late. The key was being flexible.

I’m not suggesting that flexibility is easy. In fact, it’s quite the opposite. Flexibility forces you to let go of expectations, of pride and of plans that were made. “Being flexible and versatile is an advantage if you have the desire to succeed at anything you do. You will experience day to day difficulties, delays and frustrations in your demanding work and life and when dealing with people. There are times when you have to deal with situations that do not fit in or interrupt your schedule.” from About Personal Growth.com

Day-to-day annoyances and set-backs are inevitable but we choose whether to roll with them or fight them.

Here are some ways that I was flexible recently:

I planned to run in a threesome on Sunday. Something came up with my other two partners. No big deal, I’ll hit the road by myself. And I’ll get to wear earphones in both ears instead of one on this run!

I was sending urgent emails yesterday and, for no apparent reason, they stopped sending! I later discovered that an over-height semi truck had taken out the power lines several miles away, and all communication was down in the area. This one was totally out of my control! Rather than have a fit about it, I saved the e-mails to a file, brought them home and sent them from a different computer.

I assisted in hanging murals at our church in the nursery that were 10’ x 30’ in size. It was a lot of work but they turned out beautifully and we were done by the end of the day. The next morning, I received a call. The murals had fallen off the wall! “Seriously?” I thought. “Like, a few inches??” I asked, hopeful. “Let me send you a picture,” my contact said. OH MY! They had almost completely fallen. I called the artist that I assisted. He had never seen anything like this and he has been doing it for over 20 years. Plans change: the murals had to be re-hung that day—we just used a different adhesive the second time. I was thankful for the patience of the church, and that I had help. Although I did not plan on this glitch, it was manageable. I was just grateful that something could be done to rectify the situation.

I ordered photo thank-you cards from Walgreens for my kids’ birthday party. I received a confirmation that said they would be ready in one hour. Four hours later, I went to pick them up and the order hadn’t been sent to the store. “There must have been a glitch somewhere,” the manager explained. So, I returned home, e-mailed support services and they re-sent the order. The next day I went in to the store once again to pick up the order and they still did not have it! Ugh! As frustrated as I was, it wasn’t the end of the world. Yes, it would be a few more days before our guests received their thank-you cards. In the grand scheme of life, however, it was no big deal. I was the only one who would even know the difference. I decided to be flexible and not become stressed out over the hold up.

Two weeks ago I had an MRI. The technician shared with me that she ordered the results to be “stat.” I wasn’t sure if that was good or bad. I waited by the phone. And I called them, twice. No results. Unfortunately, I was supposed to go to San Francisco the day after the MRI for the Nike Women’s Marathon. When I didn’t hear from the neurosurgeon’s office, I decided to cancel our trip. I reasoned that I could always run the next year. I had to become more flexible in my desires. In the end, it all worked out. My running partner’s husband ran with my bib, and gave ME the Tiffany & Co. finisher’s necklace!

The point to all these stories is that, whether our speed bump is large or small, we need to be flexible enough to roll with it and not allow a speed bump to become a parking spot. For me personally, flexibility is part of my faith.

In Proverbs 3, the Bible says, “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your path.”

That’s my key. Him. When He is directing my path, it’s easier to pray instead of stress.

Wondering what happened when my doctor’s office did finally call back? They said they could detect a change, but not one significant enough to bring me in before my scheduled appointment two weeks later. And so I’ve been waiting for going on two weeks now, and struggling with not knowing. That’s a hard place to be for a strong Type-A personality like myself. I’ve had to give it to God. I’ve had to let the worry part of me go, and be flexible enough emotionally to put my faith in God, and not in myself. After all, He’s got the whole world in His hands.

I’m praying that God would bring good results from my MRI when I meet with my doctor tomorrow. And I hope you’re still praying that for me as well.

GIVEAWAY! What is one way you have been/ can be flexible this week? Comment on this post and you’ll be entered for a $25.00 gift card to Starbucks!

If you comment anonymously, just remember to leave your name and a way to contact you!