Wednesday, January 26, 2011

A Foggy State of Mind, Blessings and Eggs

The past few days, I felt like I was wandering around in a fog and the weather conveniently matched my state of mind...I was running to doctor's appointment after doctor's appointment...making phone calls...emailing professors...and packing!! Here's a quick update:

First thing's first, almost all of my professors responded to my email about trying to complete the semester from my parents' house with words of encouragement and have agreed to work with me. I am just waiting to hear from my biology instructor. That is a huge blessing! It meant that I could come back to Turlock for the first two weeks of class--which means I will get a solid start at school before my surgery.

Second, a dear friend of mine offered my family not one, but TWO places to stay during my surgery and recovery at UCSF. Both of which would not cost us anything. Another huge blessing! My family will be staying at a ministry house that is run through a local church within 2 miles of the hospital with a garage for our car and a small kitchen so we don't have to spend a fortune eating out for every meal.

Third, I met with a fertility doctor about harvesting and freezing my eggs yesterday. It was an interesting experience...we met with the financial coordinator first, who explained how much the process would cost. I had been warned that it would cost as much as a down payment on a house so when she showed me the cost breakdown, I was surprised to see that it was considerably less than I had expected. God is so good. After the financial meeting, my mom and I met with the doctor who answered all of our fertility questions. He was a little concerned with the time frame I gave him (I have to get it all of this done before my surgery on Feb. 14) but he gave me a few options. One included moving the surgery date back a week, but I was not willing to budge on that. I knew that my surgeon at UCSF would not agree to it, either. The best option seemed to be the one that was the most "out of the box": test my progesterone, (if the progesterone was high) start four days of injections to induce a menstrual cycle, then start ten days of follicle stimulation injections, and finally harvest my eggs the Friday before surgery. He did a quick ultrasound to be sure I had all my lady parts and then gave me the order for the lab work he needed. The nurses had already suggested that we get the blood work done at our own clinic so that insurance would cover the cost. I made an appointment with my primary doctor's P.A. for this morning to get everything taken care of before I rode back down to school. Long story short I was able to get the tests done (praise God), my dad drove me to school, and my fiancee gave me my first injection. It was super scary...and I'm not looking forward to the next all. But I keep telling myself it will all be worth it in ten years...

Well, tomorrow is the first day of spring semester and I don't have class until 12:30pm. Not too shabby! :)

Please continue to pray that the remaining instructors will be willing to work with me and that I will be able to finish this semester. I am meeting with one of the professors tomorrow at 4pm to discuss the possibility of making accommodations to his class structure. Pray that the Lord will give me the words to say and the courage to say them. Pray for my fiancee and I as we do these fertility injections, that the Lord will take away my fear. Pray that I will be able to focus in my classes instead of stressing about all of the other things going on right now.

I thank You and praise You for the clear direction and guidance You have given me so far, Lord and I pray that You will continue to provide. You know the whole story, and I only know a few of the characters. I pray that you would give me patience until You reveal Your plan because I know it will be  far better than mine. Protect me in the days ahead, Lord. I pray all these things in Your powerful, healing name, Jesus. Amen.

Goodnight all!

Friday, January 21, 2011

A Romantic Valentine's Day...Surgery?

It was still dark outside when my alarm went off this morning at 4:30am. I took a quick shower, threw on the outfit I picked out the night before and grabbed some coffee after I brushed my teeth and we were out the door by 5:45am. My fiancée was working and my brother volunteered to watch the dog, so it was just my parents and I today. We made it over the bridge and into the city by 7:30am so we decided to find a Starbuck's to kill some time until my appointment at 9:15am. It was a beautiful day in San Francisco so there were plenty of interesting people to watch walking down the sidewalk in front of the Starbuck's window as I sipped my non-fat vanilla latte and munched on my mini vanilla scones. My mom and I imagined where each of them were going and I got so wrapped up in the story that I almost forgot why we were there.

We arrived at the neurosurgeon's office about fifteen minutes early, checked in at the front desk, and then took a seat in front of the expansive wall of windows. There was still fog lingering over the Golden Gate bridge when we got there but by the time we met with the nurse and then the doctor and then his office coordinator, the blanket of fog covering the city lifted. The doctor was busy across the street at the hospital so I met with his nurse practitioner first to review my past medical history. He reviewed my scans so that he could show me what he wanted to do.

After looking at my scans, discussing my history, and a meeting last week with my neuro-oncologist, the vice chair of neurosurgery at UCSF recommended another craniotomy in order to remove more of my cancer-infiltrated brain tissue. He said he would never go back in (or perform an extended resection) unless he could get at least 70% of what is left. There is a risk that I could lose some sensory function in my left foot/ankle but it wouldn't affect my motor function in that area. In other words, I will still be able to use my foot/ankle but if I were standing barefoot on carpet I might not be able to tell you if it was shag or burber. He is going to avoid my visual cortex so that I won't risk losing any of my sight.

My surgery is scheduled for February 14th, 2011, which means I will be able to go back to school next week! I will get two weeks of school under my belt before my surgery so hopefully I will be able to make all the arrangements so that I can finish the semester from my parents' house. I emailed my instructors this evening asking them to consider my situation and make appropriate accommodations.

I'm feeling okay about the decision to go ahead with surgery. I understand that I have a better chance at recovery if I start treatment with less cancer cells in my head. I'm nervous about having surgery in SF because I'm not as familiar with the hospital but UCSF Neurosurgery is in the top three in nation and #1 on the west coast so I shouldn't be too nervous. I'm honestly more anxious about being able to finish this semester than I am about the surgery. But the best part is: God's in charge of something as important as brain surgery but he's also in charge of something as insignificant as school. If I'm going to make it through this year I'm going to have learn to let go and trust Him with every part of my life.

I Peter 5:6-7 says: 6 So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. 7 Give all your worries and cares to God, for he cares about you. 

I turned our engagement announcement into the Daily Democrat yesterday and since we all know how reliable that paper's the photo just in case it doesn't actually get printed before the wedding. :) 

I will post more updates soon, but for now I need some sleep! Goodnight :) 

Tuesday, January 11, 2011

A Day in the City

As I write this, lounging on the couch at my parents' house, I feel physically, mentally, and emotionally exhausted. Today was my appointment with a neuro-oncologist at UCSF. My family and I left the house at 10am this morning, armed with all of my scans, lab reports, medical records, and arrived at the UCSF Parnassus Campus at 11:45am. After some coffee and a bagel at the food court, we rode the elevator up to the neuro-oncology waiting room where I filled out some more paper work. 

The doctor invited us back to an examination room where she showed us my pre- and post-op MRIs. I was a little surprised to see that the post-operative scan had so much tumor left. My neuro-surgeon removed the high-contrast portion of the tumor but the surrounding area remained. The oncologist said this was standard procedure but said she would like to consider doing another surgery to remove more of the tumor using some more sophisticated imaging. This imaging would allow them to identify the surrounding brain tissues' function and hopefully avoid disturbing it. 

My tumor is a grade 3 anaplastic oligodendroglioma, with a co-deletion of 1p and 19q chromosomes. Grade 3 means it is a more aggressive type of cancer but the deletion of 1p and 19q means that it IS responsive to treatment (radiation and chemo). The doctor is considering another surgery in order to remove as much tumor as possible before we start any other treatment. She will present my case to the rest of the UCSF team this week, determine the best options for treatment, and then contact me by next Tuesday. They may decide that another surgery in this part of my brain would be too risky, but she said that if surgery is a viable option she would want to go in as early as two weeks from now. 

After discussing the possibility of another surgery, she shared three options for treatment with us. Radiation alone, radiation combined with chemotherapy, and chemotherapy alone. There are side effects and risks that come along with each treatment and since we aren't sure which one will be best for me at this point she just touched on a few including hair loss, fatigue, nausea, and damage to my DNA. She encouraged me to look into fertility preservation as soon as possible because I will have to freeze my eggs before I begin any kind of treatment in order to have any chance of pregnancy in the future. 

I shared with her that I only have four more months of school left before I graduate and asked if it would be feasible to begin treatment after graduation. "I wouldn't wait four months," she said with no hesitation. 

The thought of another surgery within the next couple of pretty overwhelming. But even more overwhelming and frustrating is the idea that I might have to wait to graduate. I am so close to being done! So close...But as my brother said, "This is your brain we're talking about, Maggie." I have to take a step back and let God handle it. This is COMPLETELY out of my hands at this point. No control...whatsoever...

So, what am I going to do while I wait to hear back from the oncologist? Well, first thing tomorrow I am going to call my primary doctor to find out about freezing my eggs. Then I'm cleaning out my closet. Literally. I'm going to go through all of my old stuff from high school and trash as much of it as possible. And then I'm going to register for wedding gifts with my fiancée. I know it's early, sounds like so much fun right why not?! 

Some of you have asked if there is anything you can do (thank you! :)), and my answer has been to please just pray. Here are some more specific prayer requests that I have at the moment: 
  • Wisdom and discernment for the UCSF team 
  • Clear direction as I make very important decisions about my treatment but also about my education
  • Patience and peace as I wait to hear back about another possible surgery 
  • Ease of communication as my fiancée and I live in different cities for the time-being 
  • Rest. I'm having a hard time sleeping.

Do not fear, for I am with you; 
do not be dismayed, for I am your God. 
I will strengthen you and help you; 
I will uphold you with my righteous right hand.
Isaiah 41:10 


Sunday, January 2, 2011

An Important Update About My Recovery and the New Year

I have been thinking about posting for a few days now, but I have had a hard time getting started...The surgery has passed and I am feeling stronger everyday now. I have not had a seizure since Christmas Eve and I have regained more sensitivity in my left foot. The doctor may have disturbed a nerve during surgery that affected that area of my foot and also my left jaw--I can't open my mouth as wide on that side but my vision still seems to be the same. I am still on a steroid to reduce brain swelling and inflammation so I look a little puffy.

Thursday, December 30th, my parents and I drove to my neurosurgeon's Marysville office for the post-operation appointment. He needed to take the 22 staples out of my head and then discuss the pathology results of my tumor. He had already talked to us about the surgery during my stay in the hospital and at my discharge. My fiancee had to work that day so I remembered to throw the voice recorder in my purse to record the appointment for him. All of us felt so grateful that I had made it through surgery...we were all in sort-of a happy fog. We sat in the waiting room leafing through magazines and chatting about the upcoming wedding preparations. That morning marked seven months to go until the big day. The pathology was on my mind but I wasn't overwhelmed with fear or anxiety. 

The neurosurgeon invited us into his office and then promptly began to rip the staples out of my head with little or no warning. I grabbed my mom's hand and squeezed HARD as he yanked on each one. When he eventually finished and dabbed the tiny drops of blood away, he sat down and discussed the results. 

The tumor was found to be malignant, which means it is cancerous. Apparently, the preliminary results, which the surgeon had received on the day of surgery, had suggested cancer but my doctor had wanted to wait until he saw the next results before giving us the final pathology call. Goomer was the size of an apricot and was identified as an anaplastic oligodendroglioma. We are waiting for some chromosome test results to come back to determine how fast he will grow back and to figure out a treatment plan. My neurosurgeon said that he did not expect me to be able to return to school on time and suggested that I may have to take this semester off in order to receive treatment (some combination of chemo and radiation therapy). This spring is my last semester of college. I have received my graduation approval, I'm registered for classes and I am planning a short trip to Portland, Oregon to visit a friend for Spring Break. I am finishing the application process for the credential program which starts the week after graduation, and the wedding a month following...All I could think was...I don't have TIME for this! 

Everything happens in God's time and according to His plan. I was able to finish last semester before the surgery and now I have three and half weeks to regain some physical strength before spring semester. I feel like God has given me this time to circle the wagons with my family and to really "gear up" for the coming year. While there are still so many unknowns about treatments, time frames, locations, insurance...God has blessed me with peace. He has been faithful to heal me thus far and I believe that He will continue His work. 

The night before the follow-up appointment, I asked my mom to read my blog in it's entirety. Now that she's read it she and I both agree that the posts about my hospital stay and recovery need a little something, so I've asked her if she would be willing to share something from her perspective of the whole experience. She's still thinking about it so for now I will share some pictures from New Year's Eve. 

My neighbor and his wife took my parents, and my fiancee and I out to dinner on New Year's Eve at Il Fornaio in Downtown Sacramento and it was absolutely just what I needed. Delicious food, festive surroundings, a new outfit (a new silk top and a pretty hat with feathers), and wonderful company...what more could anyone ask for! Just as the meal was ending and we were about to head home, the pastry chef presented each of us with a personalized dessert plate. My plate said "Happy Healing, Maggie!" in chocolate ganache. We were back at my parents' house by 8pm and had a swallow of champagne at midnight before fading at 12:15am.

(A little puffy but happy to be out and about :))

(My personalized yummy dessert plate with chocolate mousse and raspberries!)

 The year 2010 was a very memorable parents celebrated 30 years of marriage boyfriend of five and half years got down on one knee in the snow in Ulm, Germany to pop "the question"...his father spent a week in the ICU with serious heart issues and has seen great healing and older brother graduated from college...I survived a craniotomy!! Praise the Lord! The year 2011 consists of so many unknowns for my family and I...but not for God. While I would loooooove to know what He has up His sleeve...I am comforted by Jeremiah 29:11:
 11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I am planning to continue the blog to update my friends and family about my recovery and about my upcoming year in general ( We will be seeing the oncologist sometime this week, so I will hopefully have more information very soon. Thank you for all of your prayers, love and support thus far--it has been a huge encouragement!!