MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY

MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY

In one quick trip in the mri machine, life changed, Again.  My mom flew into town and within an hour she “knew something was really wrong with me.”  She suggested Rex take me to the er when he arrived home from work.  Thirty minutes into our er visit, and I was being wheeled to neuro-icu where I would stay for the next 13 days. 

 

I knew I didn’t feel well.  I hadn’t felt well since radiation in July, but the receptionist didn’t seem to care when I called for an appointment with my neuro-surgeon and radiation oncologist.  No apt necessary is what I was told. 

And then a few months went by and I landed in the icu. 

It was a wild ride.  One I’m still on, since full recovery is estimated to be up to a year. 

On the board of 9 specialists, there were 5 differing opinions, none of which were concrete.  The only thing everyone agreed on was that my frontal lobes were excessively swollen, and that whetever was going on, was a reaction to radiation. 

Meanwhile, I’m exhausted, laid up in bed for up to 15 hours a day and saying anything and everything that comes to my mind (because that’s what you do when your frontal lobes are swollen).  Apparently it’s the equivalent to being extremely intoxicated, EXTREMELY.   

And so the tumor board met several times on my case and decided to discharge me after 2 weeks in the icu since they were only observing me.  I was discharged and placed in home health care.   

Home health care provided me an iv pole and 1800 mg of steroids a day.  As if the swollen frontal lobes weren’t enough, we’re going to try high dose steroids too?  Whew, I’m glad to have that behind me. 

A week after the steroids another scan showed the swelling or tumor, or whatever it was, had worsened.

I was scheduled for a brain biopsy.   I completed the pre-op scans and necessary blood work for surgery which was to be the following day.  It was a 4:30 brain biopsy surgery.  At 8:30 the morning of the scheduled surgery my surgeon called with amazing news.  The panels of dr.’s involved felt there was slight improvement and thought it best to postpone the surgery in hopes of healing without an invasive procedure.  Thank the Lord!   I was elated!  I had been spared, at least temporarily, a brain surgery. 

A month later, we would scan and continue to watch for activity.

As the month approached, I went in for the scan with great hope that I was healing.  I was beginning to feel better, hopefully it was because I was actually better.  The scan was still troubling to the tumor board, but there was steady improvement.  No surgery scheduled.  Another scan planned for a month out. 

By the next scan, there was significant improvement!  The specialists on my case reported that “they had never seen anything like this before,” and my neuro-surgeon said “we’ll be studying you in the text books for years to come.  We have no idea what’s going on.” My MS specialist stated that in her entire medical training and practice she had never seen a lesion disappear as mine had.  “Especially one that large”, she said in amazement.  Internally I chuckled, you don’t know my God, I thought. 

 

And so this healing process is estimated to take up to one year.  I am thrilled to report that I am only 6 months into healing and I am feeling pretty dang good.  In fact, I have ran three half marathons in the last three months.  Hooray for feeling better!

I’m still being watched closely, but it appears I am on a strong road to recovery.  

Would appreciate prayer as I continue to scan regularly to monitor this healing process!

 -Chrissy

 

 

 

Be Careful How You Interpret the World Part II

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

When Logan began kindergarten three years ago, I was only weeks out of neuro-surgery. I couldn’t drive him to school. I was puffy from the steroids I was taking, I was tired and my head tingled from all the nerves reconnecting. Despite all of that, I was so happy to be alive and walking him to his first day of school. And time fades all things because I rarely think of them now. What I think of is how amazing it was that I was able to be there for his first day of kindergarten.

Fast forward exactly three years, and now I am recovering once again. I haven’t written because I’m not feeling well. Physically, things have been very up and down since the Cyber-knife treatments. I so badly want to write about how I’m feeling well and that things are going great…but that “feel good” state hasn’t lasted long enough for me to write. So once again, I’m just thankful that I was able to walk my baby girl to her first day of kindergarten.

Headache, exhaustion, hair loss and nausea didn’t matter last Wednesday—all that mattered was that I was here on this earth to take Logan to his first day of third grade and Tuesday to her first day of kindergarten.

They melt my heart! How I love being their momma. When I begin to struggle with the frustrations that I just don’t feel good, I’m trying to cling to the really good things in life. My eternity is secure. My kids laugh. My kids are healthy. Rex and I are in love with one another after 10 years of marriage.

And so, while I’m praying this stint of feeling crappy passes quickly, I’m remembering that even on crappy days, my God loves me and takes care of me, and there are many more things in my life to smile about than cry about.

What about you? What are you smiling about these days?

Three Down, Two To Go

My Cyber-knife procedures are 35 minutes each. As it turns out, it is an uncomfortable, somewhat painful experience.

The mask that is covering my face (and anchors me to the metal table that I lie on for the procedure) hurts. It is TIGHT. It leaves impressions on my face when I am done. The first day I was advised not to wear make-up. My tech, Kim, whom I’ve grown fond of, explained that I could, in fact, wear make-up, it just might rub off on the mask. And so the second day, I wore make-up, not realizing that the mask is so stinking tight that I would not be able to open my eyes with the thickness of my lashes with mascara on them. Oh my! That was an entirely new level of anxiety! At least the first day I could see through the tiny white criss-cross holes of the mask to look around when I wanted to.

Upon my arrival at my first procedure, my tech asked for my CD. "CD?" I wondered. "Yeah, that would’ve been a good idea. Tomorrow for sure," I thought. And so, she offered to turn the radio on to the only station they had reception for in the Cyber-Knife room. The station? 70’s rock. Can I throw up already? I was born in the late 70’s, but I was not listening to rock. I asked her to turn it off, but she had already left the room. And so my 35 minutes of pressurized laser beam therapy included Led Zeppelin and The Grateful Dead. Don't get me wrong--it's not that I’m that opposed to the music, you just wouldn't see it on my list of songs for relaxation. Oh well, we had a good laugh when we left the hospital.

Physically, I am tolerating the treatment well. I have been super tired (I took a four-hour nap on the first day), have had a light headache, minor nausea (that goes away a little after eating) and occasional burning in my eye. Nothing I can’t live with.

As the treatments progress, side-effects can be more prominent. So, as usual, I’m going to ask you for prayer that the last two treatments would be flawless, and effective. I go in at 10:30 on Monday and 8:30 on Tuesday. I will update more as the treatment ends. Your love, prayer, concern, and care has been amazing this week. I have been blessed with special people in my life. I thank the Lord for you often!

 

Cyberknife Tomorrow

“Talking to men for God is a great thing,

but talking to God for men is greater still." E.M. Bounds

Ecclesiastes 4:9-10 NIV
"Two are better than one, because they have a good return for their work; If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!"

As I travel this path of conquering a brain tumor, I am thankful for my friends in life.  From those friends of my early childhood to those I have recently gained, I have been tremendously blessed by love and encouragement, and cared for in many ways on my journey.  This process is enriched because of you.  Thank you.

It is the eve of my first cyber-knife appointment. As it turns out, once again, ignoring the obvious has not made it go away.  Pushing thoughts of this procedure out of my mind every time it crept in has not made my tumor go away.  Oh, well.  I am fine.  I am good. But I am also unsettled. 
I could go on and on, writing about all the ups and downs, but that is not going to improve my day or yours. I do know that there is power in prayer.  And so today, I am asking, again….will you pray for me?

For the radiation oncologist, the neuro-surgeon and their team that is overseeing my procedure tomorrow and the following days. Will you pray for their wisdom?  That their calculations of areas to be radiated would be exact and that not a single cell outside of the necessary area would be harmed, and that my vision would be preserved.

Would you pray that I would tolerate the treatment well?  That side effects would be minimal and that swelling of the brain would not be problematic (I do not want to go on steroids!!!). And lastly, would you pray that this treatment would be effective?  I mean fully effective and that this tumor would die once and for all!  Thank you.  Thank you so much.

I am scheduled for an 8:30am check-in tomorrow in downtown Phoenix at the Barrows.  Once the procedure is underway, it will be 30 minutes to an hour of treatment.  I will not know the exact length of treatment until I arrive tomorrow. 

One last prayer request, one that I write with a tinge of reluctance.  Will you please lift up my emotional well-being?  All the positive statistics in the world cannot settle my heart or change the raw fact that I am having what is referred to as a “bloodless brain surgery” tomorrow.  Here's a picture of the machine. As you can see, it's a pretty big deal.

My mind wanders, a lot…my baby girl isn’t even in kindergarten yet, I am only 33, what if this isn’t effective and they have to do neuro-surgery again, how could a laser be that precise…? and on and on it runs.
Would you pray that I would be calm tomorrow?  That the Lord would settle my soul in a way that only He can and that I would remember and be comforted by the truth: that my times are in His hands. 

I thank you.  From deep within I am overwhelmingly grateful for the love and encouragement you have all brought to me through this process. 

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.