Tuesday, May 10, 2016

A Mother's Perspective

I have always had a very close relationship with my mother. Now that I'm an adult, our relationship has grown into a treasured friendship. She lives her life with grace and faces every challenge with faith and perseverance. She has been an incredible support and caregiver throughout my journey with brain cancer. When I started my blog, six years ago, I asked her to write a post so that others might be able to understand and learn about brain cancer from a mother's perspective. A few weeks ago, I approached her about it again and the following post is what she wrote. Love you, Mom. :) 

From the very day my daughter’s brain tumor was lit up on the screen in our primary care physician’s office, we have faced the battle to survive, as a team. That was the last day of September 2010. For once in my life, I was completely speechless, caught completely off guard, and listened to my brave 22 year old tell the doctor that she was way too busy to take time out for surgery, that it would have to wait! Maggie Hinkle was in her Senior year at Cal State Stanislaus, carrying a double major, working part time, and planning a wedding! Not only that, she was the vocalist for the University jazz band and had a performance on the calendar and midterms coming up! She saw the first neurosurgeon the following day and when he recommended surgery, she again pleaded to be allowed to finish her semester and have the surgery over the winter break, after finals. (He too was a musician and they spoke the same language.) I felt like he was speaking in a foreign language and could not take it all in, my eyes must have glazed over as I shut down. Maggie agreed to have frequent MRI’s to monitor the tumor and that if there was any change at all, she would have the surgery, and she gave up driving and rode a bike to her classes. She sang with the jazz band and in the CSUS Christmas Choir program. I was scared to death, afraid for her to wait, afraid for her to put off the recommended surgery. I had been protecting her for her whole life, how could this be happening??? As parents of a determined young adult, we could not make her decisions for her but we would stand by and support her! We prayed constantly and enlisted the prayers of all our friends and family, to pray for her wisdom, for the wisdom of all the medical team and for God’s protection. She blogged about her brain tumor, she even named it! She ordered her wedding gown! And we prayed. She completed her last final for the semester in mid December and had an MRI the next day showing the first indication of change… the surgery was scheduled for December 21st. Brain surgery on my baby. I remember thinking about how I was so careful, even about what I ate, during my pregnancy… I didn’t even eat chocolate! How could she have a brain tumor? We started the day very early, at the hospital at 6:30 AM, but the surgery didn’t happen until 3:30 PM and lasted 4 ½ hours. Surrounded by family and friends, we waited. When the surgeon came out to report to us, he told us he could not get it all but that “it” was going to pathology and he would not “call it” until he got the report. We went in to see her and I remember being so thankful that she knew who we were and knew her fiancĂ© and her brother! She could see us and hear us and talk to us. She would spend the night in the ICU and I spent the night in a chair draped across the foot of her bed, napping and praying. Maggie’s tumor was deep and the part of the brain that controls nausea was disturbed during surgery and it was hard to see her so nauseated for the first few days but her brother and fiancĂ© took the night shifts at her beside. My husband and I were there early and left late. We all felt helpless. I told the doctor that she might be his patient, but she was still my baby! My husband and I held on tight to each other and to our faith in God. We prayed constantly that our faith would be greater than our fear. The pathology report on December 30, 2010, was that it was cancer, an Oligodendroglioma?? Who knew there was such a “thing”?! We tried to joke about the name, but any kind of cancer is a fearful thing. You are up against the unknown. We circled the wagons, so to speak, our son moved home from San Francisco to help us, as much as helping his sister. He made her laugh and that was good medicine. The Sacramento neurosurgeon referred us to Dr. Susan Chang at UCSF and she “threw us all a lifeline” from day one! She, and her team, is amazing. There were two more surgeries, one lasting 7½ hours, and a year of chemotherapy. We learned to give shots and administer antibiotics every 4 hours in an IV PIC line. It is a hard road to travel and you don’t want your child to suffer and all you can do is hold their hand and promise to be there and hope they can’t see how scared you are. You can also be the one who washes the dried blood from their hair for a month after surgery and the one who tells them how cute they look in a scarf when their hair falls out from the radiation. Or, like Maggie’s dad, you can remind everyone on the surgery team, as they rolled her to the operating room, to take as little of her hair off as they possibly can, “remember she is planning a wedding when this is over.” Or, like her Uncle Mark, tell her you will “BUY her more hair! Just get well.” BUT there were happy times: There was a college graduation, (with honors) AND A BIG WEDDING CELEBRATION, she is now MAGGIE HINKLE GUTNIK. She got her teaching credential, and a teaching position at a great school. In the spring of 2014 she put together her first team, Bye Bye Brain Cancer, for the Brain Tumor Walk and we walked with her, proud to be a part of her hard work for an important cause. AND THEN THE CANCER CAME BACK last year in the spring of 2015, LIKE A THIEF IN THE NIGHT!! And two months later we joined Maggie’s Team again, determined to do the Brain Tumor Walk, even if she couldn’t. But she did! And her radiation and chemo was delayed and started the following week. God knew how important it was for all of us to do what we could to raise money for research and come together as a team to support Maggie and all the others who are facing the fear that comes with brain cancer. It still amazes me what a brave young woman my daughter is! She did 6 weeks of radiation and chemo TOGETHER and then 6 more months of chemotherapy since the last Brain Tumor Walk. She has continued to teach school every day and live life, with her amazing husband who has been by her side through it all, to its fullest every day. We continue to pray and try to support them both any way that we can. The easiest way to support them is by participating in the Brain Tumor Walk and feeling like we are doing something toward a cure so that our children outlive us! We look forward to seeing you all at the 2016 Brain Tumor Walk! My prayer for all of us is that our faith will be greater than our fear! Patricia Hinkle Proud mother of Maggie Hinkle Gutnik, brain cancer survivor

Sunday, April 8, 2012

Happy Thanksgiving, Merry Christmas, Happy New Year and Happy Easter!

Well, I blinked and Brad and I have been married for almost five months! It feels like just yesterday that I was humming Frosty the Snowman but in a couple of hours we will be celebrating Jesus Christ's resurrection. 

On the crisp autumn morning of November 19, 2011, Brad and I stood in front of a warm crackling fire and a small crowd of our friends and family as we promised to "love [each other] when we are together and when we are apart, when our lives are at peace and when they are in turmoil, in times of rest and in times of work, in sickness and in health." 

We wanted to let God be the focus of our ceremony so we decided to keep it simple but meaningful. Our officiant and family friend, Richard Chiolis, laughed out loud when I told him we didn't want "any fluff." We felt so honored to have Rev. Chiolis marry us! Not only does he have an amazing sense of humor, he and his wife have been married for over 60 years! His flair for storytelling and heart for Christ came through during the introduction and his brief message based on the scripture passages we chose (Colossians 3:12-17 and Ecclesiastes 4:9-12). 
"And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.
Colossians 3:17 

Music was also an important part of our wedding day. Some of my family and friends were surprised that there was no live music and that I didn't want to sing during the ceremony/reception. I have so many talented friends that I could have had a woodwind quintet play a processional, or a jazz combo play us into the reception but how would I ever choose who I wanted to play?? Also, no matter how talented, live music has the potential for intonation and tempo issues. In regards to the lack of my own vocals, I have always known that I wouldn't be able to sing at my own wedding. It's already an emotional day...nobody wants to see me blubber while I try to sing "From This Moment On." That's just too awkward. For those of you who are curious what music we DID choose, here is a sampling: 
Prelude: Tenderly, Bill Evans Trio 
Attendants' Processional: Corcovado, Oscar Peterson Trio 
Bride's Processional: And I Love Her (Beatles Cover), Pat Metheny 
Recessional: Best of My Love, The Emotions 
The wedding party danced into the reception to the song Love Train by The O'Jays.

We couldn't stop smiling! 
Or smooching...

When the reception came to an end we waved goodbye to our friends and family from the backseat of a beautiful white Chrysler 300 driven by our chauffeur *ahem* my brother Greg. He drove us back to the hotel so that we could change into comfortable clothes, get in our own car and make our way to Pacifica, CA. It was a perfect, relaxing and romantic weekend. We walked along the beach, window shopped in all of the little antique stores, went on a short but beautiful hike and ate a delicious seafood dinner at a restaurant across the street from our hotel.

 The view from our honeymoon suite...

On a short hike...
We left the coast Monday morning and headed back to our new home in Turlock. I had a few classes to go to before we spent our first Thanksgiving as a married couple with my family in Fresno. 

On December 6, we went to UCSF for my next MRI and follow up appointment. My oncologist was thrilled to show me us my new scans--my tumor was finally shrinking! She compared my latest scan to the scan that was taken right before I started chemotherapy and it was like night and day! A friend of ours said, "Marriage must agree with you!" Being married has given me a great feeling of peace but I give all the credit and the glory to God for my progress. 
Brad and I decided to spend our first Christmas Eve and day by ourselves. This year Christmas fell on the last day of my round of chemo which is usually the day that I feel my worst. We weren't sure if I would be up to a big visit with family so it seemed like a good idea to stay home. We had chinese take-out for dinner and then attended the Christmas Eve service at Good Shepherd Lutheran Church here in town. I have always loved "traditional style" Christmas eve services and this was just what I was hoping for. I floated home on a cloud of Christmas spirit and slept like a little baby. After we opened presents the next morning, we sat on the couch and called both our families to wish them a Merry Christmas. We even video chatted with Brad's grandparents. Amazingly enough, I was feeling so good that I decided to cook Christmas dinner! But I might have bitten off more than I could chew (...get it?) because the minute I sat down after we ate, I fell fast asleep.

Our First Christmas Dinner 

The day after Christmas we drove to Fresno to visit my family. My cousin Aaron who is in the Navy had brought his wife and kids all the way from Virginia Beach to California. I hadn't seen them in years so I was amazed by how much the kids had grown! It still felt surreal to introduce Aaron to my husband Brad. 
On January 18, Brad and I flew to Maui for our honeymoon! I have been to Oahu about five times but I had never been to Maui so I was really excited. It was an amazing trip that I will never forget. We were upgraded to a suite with a full kitchen (not like I was planning on cooking...) but spent most of our time walking or laying on the beach. We also spent a whole day in Lahaina, went whale watching, and took two hikes. Whale watching was definitely a highlight of the trip. I felt so blessed to be so close to some of the largest mammals in the world! We also splurged a little and got professional portraits taken on one of the last days of the trip: 

I started the Multiple Subjects Teaching Credential Program at CSU Stanislaus on January 26. My life suddenly revolved around writing lesson plans, creating assessments and observing master teachers. This was all super exciting...but Brad and I were ready for a quick weekend away to the city. On February 24, my brother married his wonderful fiance Shay at the San Francisco City Hall. It was a brief but beautiful ceremony followed but a great night of celebration! It was great to get out and be social but when we made it home I was exhausted. 
On March 12, after almost two months of constant schoolwork, my body finally gave in to all the germs I am exposed to at school. My responsible husband decided to call my oncologist the morning of March 13, when we couldn't get my fever (102) to break since the night before. My doctor was very concerned especially after she heard that I was congested and had a chest cough. When Brad got off the phone he told me I had half and hour to put a few things in a bag and that we had to get to Woodland as soon as possible. My doctor was worried that I had a lung infection because of my compromised immune system. My white blood cell count was low (3.1) but instead of an infection my influenza swab came back positive. She put me on antibiotics and a prescription to help shorten the flu symptoms so that I could start my next round of chemo the following week. I spent the rest of the day and most of the next in bed at my parents' house. I returned to school as soon as I could but it really slowed me down and has taken me a few weeks to fully recover.  
My tumor has continued to shrink since December and it is barely visible on my scans now. My round of chemo in May will be my last! I am so thankful that my twelve rounds have gone by so quickly and that it has been effective! 

This past week I was challenged to reflect on God's incredible sacrifice. 
In comparison, my own "suffering" seems so minuscule... 
But he was pierced for our transgressions, 

   he was crushed for our iniquities; 
the punishment that brought us peace was on him, 
   and by his wounds we are healed. 
Isaiah 53:5
(I have listened to this song this week as a constant reminder of what Jesus went through:
The most amazing part about His suffering was that it was selfless. Jesus bore the burden of all of our sin so that we may live and experience the fullness of God's love and grace. 

Thanks be to God for His indescribable gift! 
2 Corinthians 9:15 

How can we not praise Him after all He has done and continues to do in our lives? 
Or as Paul Baloche sings, 
"What can I do but thank you? 
What can I do but give my life to you? 
Hallelujah! Hallelujah! 
What can I do but praise you? 
Everyday, make everything I do,
a Hallelujah."

Friday, November 18, 2011

...to Nuptials!

((Some of my best girlfriends and I in South Lake Tahoe for my last weekend as a single woman!)

I began this blog with the idea that I would eventually be able to write about every little wedding decision and detail...but I have come to a fabulous realization: It's not about all of the little details. What matters is that Brad and I are getting married this Saturday morning at 10:30am surrounded by our dearest family and friends. This time last year I was impatiently waiting for my next MRI to determine the date of my (first) craniotomy. I am so grateful that God has brought me through this last year and has given me the strength to walk down the aisle to the man of my dreams!!

Chemo has been going fairly well. My white blood cell count has been pretty consistent, around 3.3-3.4, except for this last round. My WBC got down to 2.8 but the oncologist allowed me to go ahead with the treatment as long as I was extra cautious and avoided crowds. This month, she pushed the treatment back for the wedding which also gave my immune system more time to build up. Overall, we still have not seen any change in my MRI since I began chemo. 

My classes have been going much better since I have been more conscious of my time management. Big assignments may take a little longer to do and I can't do things at the last minute anymore, but I can still get a good grade. My course load also gives me plenty of time to complete my homework since I only have class in the late afternoon and evening. 

I will post again after the wedding to share some pictures but I do want to share an important link with you. In lieu of wedding favors, Brad and I chose to make a donation to the Gordon Murray Brain Tumor Initiative at UCSF to show our since gratitude to the doctors, nurses, and medical staff for making our special day possible. Please consider giving to this initiative: http://www.support.ucsf.edu/giving-areas/gordon-murray-initiative which will help to expand and improve the brain tumor research center at UCSF. Did you know that some 500 Americans are diagnosed with brain cancer every day and that it kills some 13,000 people in the United States each year? I certainly didn't know that a year ago. 

Please go to the YouTube video I have given below. This elderly couple was visiting the Mayo Clinic and decided to give an impromptu duet performance. I hope Brad and I are still filled with that much love for music and each other at 80. :) 

Saturday, September 24, 2011

A Brief Update

I have been back in Turlock for about a month now and I am finally getting into a somewhat regular routine. I'm taking 12 units this semester which I thought would be a breeze compared to my previous 19 or 20 unit semesters... but I'm discovering that I'm not the same student I used to be. I used to pride myself on being a good student who didn't have to study for hours to get a good grade. I could wait until the last dying moment to complete an assignment and still receive an A. I received a large, but not overly complex, assignment at the beginning of the semester in one of my classes and put it on the back burner, thinking that I could "do it later." When later finally came, I sat overwhelmed and in tears in front of my computer. I had no idea where to begin...I was so afraid to make a mistake that I literally couldn't start.What used to take me an hour now seems to take an eternity. It was a very humbling and sad realization to come to. All I could think was, "I can't do it. I honestly can't do it." You would think after having a brain tumor, going through three major surgeries and four rounds of chemo I would have gotten the picture but it was like God was saying "You can't do it on your own, Maggie. Ask for My help." When we are at our weakest, God is at His strongest.

I began my fifth round of chemo on 9/21 and have been feeling slightly nauseous pretty much every day this round. Praise God my side effects are so mild! We meet with the neuro-oncologist again on Tuesday 9/27. I will have an MRI at their facility that morning and we will hopefully see some progress from the chemo. The last time we saw her she added another blood draw to my schedule each month (21st and 28th day of the chemo cycle) and it has also added a considerable amount of stress. My insurance only covers my bloodwork if it is done in Woodland so I have to drive an hour and a half there and back twice a month. The doctor in Woodland who administers my chemo sees no reason for me to have the second blood draw because my white blood cell counts have stayed fairly consistent throughout my treatments so far. 

My maid of honor and I went to the hair salon where we will have our hair done for the wedding for a trial run today. She did a great job considering my crazy hair cut! She even said she would give me a discounted rate because I had less hair to work with hahaha. The wedding is in less than two months and I cannot wait for it to get here! Brad and I have so much to celebrate. :) 

If you are praying for me (thank you!) and would like some specific things to pray about here are a few requests: 
-my ability to concentrate on and complete assignments 
-Dr. Chang will reconsider the second monthly blood draw
-a full time job for Brad 
-more hours for me to work at the school box office

Friday, July 29, 2011

Okay Maggie, Here We Go!

Whoa! Since when is it almost August?! 

I don't think we will ever be able to top the year that Fabio attended (see photo below) but this year's Shilling family reunion was memorable nonetheless. It was one of the smaller reunions that my family has had in a long time. It was nice to be surrounded by my family during the last few days of my first round of chemo. As I grow older, the faces are becoming more and more familiar and the conversations seem to come a little easier each year.  

2002 Shilling Family Reunion

My body seems to be responding to chemo fairly well. I have not had any nausea but I do get tired. I have also lost a little bit of my appetite, and as a bride-to-be, that is fine by me! I wonder if I’m the first chemo patient to be excited that I lost weight after the first round. I have been able to bounce back pretty quickly in between the rounds by staying active and eating a little healthier. I also haven’t lost any of my hair. :) 

On July 9th, my parents and Brad and I drove to Cambria to my aunt and uncle’s vacation home. My brother and his girlfriend drove up from Long Beach to meet us on the 10th and we all went to Hearst Castle on the 11th. It was so nice to be able to have the freedom to take a little vacation from doctors’ appointments and bloodwork for a few days. Brad and I explored a few antique stores and even took a little hike. The weather was so beautiful it was hard to stay inside! We talked about our future, made a few decisions about the wedding but we mostly just enjoyed each other’s company. His even-keel, calm nature gives my chaotic life balance.

My body is under a lot of stress because of the chemo so I tend to overheat quickly and also sunburn easily. (I got my first gnarly sunburn of the summer while I was window-shopping on Main Street in Cambria). I went to my monthly blood draw on Monday morning and I found out that I get to cut to the front of the line to avoid as many germs in the waiting room as possible. I’m still trying to figure out a way to make that work at the DMV…My white blood cell count is low but that is to be expected, so the doctor is not concerned. I just have to wash my hands a lot and stay away from crowds to avoid infections.

My “cancer fast pass” apparently only works at the lab because I arrived thirty minutes early for my MRI in SF on Tuesday, my name was called thirty-five minutes later and they didn’t put me into the machine until about thirty minutes after my scheduled appointment. MRIs have become somewhat routine for me. After they call my name, the nurse leads me to a changing room with a locker in it where I get to change into a gown and a pair of medium-sized hospital pants (no matter which facility, they never seem to have them in a large so I almost always end up tying the drawstring waist up around my ribcage in order for them to fit, which inevitably gives me the always attractive "Urkel" look). I finish the outfit with a whisper thin cotton hospital robe and stratchy hospital socks. I lock up my clothes, grab the key, and sit down in another waiting room with other robed people while I wait for them to call my name again. There’s no clock on the wall, because they don’t want you to know how long you’ve been waiting, and the only magazine left is Newsweek or Sports Illustrated...Just about the time I think they’ve forgotten me a nurse appears at the door and mispronounces my last name. She leads me to a chair where she promptly ties a tourniquet around my right arm and begins to nonchalantly slap my veins with her gloved hand. Once the vein appears, she sticks it with a needle and inserts the IV which will be used for contrast. Then she sends me back, yet again, to the second waiting room to wait for fifteen more minutes until the MRI technician is ready for me.

This time, when the technician asked the routine set of “metal objects in or on your body questions,” he was surprised to find out that the extra pouf of hair on the top of my head wasn’t created with hairspray and bobby pins. I explained why I have my super stylish mullet and we both laughed about his little mistake as I laid down on the narrow MRI table and he hooked me up to the IV contrast. He began each set of “pictures” by saying “Okay, Maggie, here we go!” as if I had just boarded a ride Disneyland. There’s a small mirror on the cage that they put over your head that allows you to see the technician at their desk and the door. I watched as the two technicians talked and munched on their lunches. I imagined the different things they could be eating...pizza? Maybe it's a sandwich... By the time he said, “Okay, Maggie less than ten minutes left...here we go!" my stomach was growling in rhythm with the MRI machine. 

Brad, my parents and I met with my neuro-oncologist about thirty minutes after we left the imaging center to review the results. She showed us the slides and explained that what was left of my tumor had not shown any growth since the last MRI. It was too early to see any progress from the chemo but she said we should feel encouraged that there was no growth. She left the exam room to grab some paperwork and the neuro-surgeon that had performed my second and third surgery stopped by. He wanted to check in and thank us for the gift my parents had brought him (a nice bottle of wine for his collection) and he also told us a little about his day so far. 
He looked tired and a little disheveled. He had been called into emergency brain surgery for a 19 year-old girl very early that morning. He shook his head and said, “She’s not going to make it.” My mom and I were both visibly shaken by the news. He paused while he examined my expression and said “You look great, Maggie! When’s the wedding?” On the way home that day, my mom told me that my surgeon came in as encouragement for her. I didn’t understand at first but she went on to say that she had gone into the appointment with the expectation that my tumor would be completely gone. She was a little disappointed to hear that it was still there. His news had brought her back to the reality of my situation.
On that note, I thought I would include the original MRI scan of my tumor before I had undergone any surgery in this post. It humbles me, just like Dr. McDermott humbled my mom, to see how much God has allowed me to overcome in the past six or seven months. The entire tumor was about the size of a peach…for some reason it helps to relate it to a fruit…Praise God that only about 5% of it is left in my head. 

Brad and I have made most of the big decisions about the wedding and now I have started to take on all of the little details...but I am constantly reminded that it's not the decorations or the invitations or the flower arrangements that really matter. It's the fact that God has given me the gift of life and a wonderful man to share the rest of it with. 

Because of the LORD’s great love we are not consumed, 
for his compassions never fail. 
23 They are new every morning;    
great is your faithfulness. 
24 I say to myself, “The LORD is my portion;    
therefore I will wait for him.”

Lamentations 3:22-24

Wednesday, June 1, 2011

Graduation and Chemo

I may have been barefoot and sunburned but I made it across the stage at graduation last week!! :) 

Between Brad and I, we had 11 people in the audience cheering us on and yes, those ARE big neon signs with our names on them...


The morning of the ceremony I received an email from my biology professor congratulating me for achieving an A in her course...If I could, I would have skipped all the way to school!

Since the second surgery I've had some issues with sensitivity and weakness in my left leg and foot so I had some trouble keeping my black heels on during the long walk from Bizzini hall to the amphitheater. Once I got there I realized that I wasn't out of the woods because my heels kept getting stuck in the grass so I just took them off! I decided going barefoot was less embarrassing than falling on my face as I walked on stage to shake the dean's hand.   

My college graduation was like any other graduation ceremony in many ways: boring speeches by unfamiliar administrators who pretend to identify with the soon-to-be graduates that they have probably never seen before. Most speakers will try to inspire the graduates with cliches like "this is not the end...it's the beginning." But for me, graduation was more than just a two and a half hour long ceremony, was proof of God's faithfulness. He gave me the strength and the resources to finish my classes despite all of the challenges I have had this year. But at the risk of sounding just as cliche as the aforementioned administrators, I have not yet reached the finish line. The next leg of the race may be the hardest...

I had my first appointment with the medical oncologist who will be facilitating my chemotherapy yesterday and picked up the pills at the pharmacy about thirty minutes after the appointment. I will take my first dose this evening before bed. The most common side effect is nausea and fatigue so she also prescribed an anti-nausea medicine that I will take an hour before I take the chemo. The doctor was very optimistic about this specific type of chemo having seen good results with patients in the past. My parents and I left her office feeling very hopeful.

Chemo will go on for six months to a year depending on how the cancer and the rest of my body responds to it. I plan to start classes (one to officially finish my BA and three towards my credential) on August 22nd and we have just decided on a new wedding date for mid-November.   

Despite our optimism, the idea of ingesting toxic chemicals for five days every month for a year...on purpose...is a little intimidating...I mean I'm not even allowed to let the pills touch my skin... I am aware that chemo gives me the best chance for a full recovery but I'm a little nervous...I was nervous when I went in each time for surgery but this is different. Chemo will be attacking all systems of my body, not just my noggin... 
I have a lot of "what-ifs"...

 What if I am nauseous for the entire month? What if I lose my hair? What if I'm so tired that I can't work next semester? What if I can't pay rent? 

No matter what the worry or the question, I believe God's answer for me is: 
"I love you. Trust Me. Let Me handle it." Please pray that I will tolerate the chemo well and that I will be able to follow Christ in full, even when I don't always know where He is leading .

1 My son, do not forget my teaching, 
   but keep my commands in your heart, 

2 for they will prolong your life many years 

   and bring you peace and prosperity.

 3 Let love and faithfulness never leave you; 
   bind them around your neck, 
   write them on the tablet of your heart. 

4 Then you will win favor and a good name 

   in the sight of God and man.

 5 Trust in the LORD with all your heart 
   and lean not on your own understanding; 

6 in all your ways submit to him, 

   and he will make your paths straight.

Proverbs 3:5-6 

Thursday, May 5, 2011

His Schedule...

I haven't posted anything new in a little over a month for several reasons. First, nothing really "earth-shattering" has happened around here. After I learned I had cancer, I made the decision to use the blog as a way to update my friends and family about my recovery...but I also decided not to post about absolutely everything. Mostly because who really needs to know that I watched three consecutive hours of Law & Order, while eating a toasted blueberry bagel with plain cream cheese? And, yes. Yes I did. And it was wonderful. But who wants to read about that?

My life has been pretty boring the past few weeks, when it comes to my health. I'm getting stronger everyday.  My physical activity from mid-December through March was very limited but now that I'm feeling better I'm trying to challenge myself and get back into shape. The physical therapist gave me a lot of really good exercises to do at home to gain strength back in my left leg and the infectious disease doctor (doesn't that sound like a delightful profession?) cleared me to be able to swim again last week. My mom loves water aerobics so I'll go with her in the evenings and swim laps.

On a happier note, unrelated to exercise, I had a birthday since I posted last time. :) Brad and I saw Young Frankenstein the Musical in Sacramento in the afternoon and then went out to dinner at my absolute favorite barbecue place with my parents that evening. When we got back to the house, my mom served my favorite cake (strawberry cake with rainbow chip frosting) while I opened my cards and gifts. I have never received so many birthday cards in all of my twenty-three years. In fact, I counted...wait for it...drum roll please...46! At the end of the night I had a pile of cards, a plateful of cake and a bellyful of barbecue...what more could I ask for?!

I thought that by May I would be writing about our July wedding wedding plans coming together. Instead, Brad and I had to make the decision to postpone the wedding. We would have come to the conclusion on our own, considering my health situation and Brad's unemployment, but we were strongly encouraged to decide sooner rather than later. So just to review for any new-comers...in the past year I have had two major brain surgeries, been diagnosed with brain cancer, got a staph infection, shared a hospital room with an elderly woman with no control of her bowels (on two separate occasions), shaved my head a total of three times, put my entire apartment in storage and moved back in with my parents while taking classes online, and oh yeah...I also had to make the decision that our beautiful summer wedding followed by a week in Maui would have to wait. I decided that if the wedding had to wait, then the blog did too...In other words, I wasn't in the mood to write about my life because it would require me to think about my life...

God's theme for 2011 seems to be "Your Plans Aren't My Plans" maybe, the "Throw Your Calendar out the Window 'Cause You're on My Schedule Now" year. He wants me to sacrifice my plans and let Him take control. Some days I hand my calendar over without an argument and other days we play tug of war. Needless to say, I put up a pretty big fight over the wedding...

After the staph infection, I began an antibiotics regimen that would last until the end of June. When I saw the infectious disease doctor a week ago, he recommended a minimum of six months on the antibiotics to be sure the infection was gone. He didn't think that the low dose would delay my cancer treatment any further.

I saw the neuro-oncologist yesterday and after looking at my latest MRI (or as I like to call them, my new headshots) she thinks my best treatment option is chemo. I'll take chemo pills for five consecutive days per month for a year, with MRIs every two months and regular bloodwork. She thinks that radiation has too many cognitive risks because of the location of the cancer and she would rather start out small and have the option of radiation down the line if need be.

The doctor warned me that chemo is systemic, meaning that it will affect other parts of my body, including my fertility but I quickly reminded her,"I've got eggs on ice!"... The doctor said that I may feel nauseas and very tired during the five days of treatment but my body will be able to rest and somewhat recover during the days in between. I meet with the radiation oncologist next week to confirm that chemotherapy is my best option.

I also start rehearsals for the last concert of the school year with the Modesto Symphony Orchestra Chorus and the college choir next week. Singing in such a large ensemble is an intense and emotional experience no matter what the literature choice but the opportunity to sing Mendelssohn's Elijah is one that I do not want to pass up. I won't be starting chemo for another few weeks so I will most likely be able to participate in graduation as well. My last final is May 26th and the graduation ceremony is the next day. I have one more class to complete next semester and I will officially be done with my BA! When I started college I never thought it would take me longer than four years but it will end up being a total of five and a half. The phrase "In God's time" takes on a whole new meaning...

I'm praying for patience and as the pastor said last Sunday that I would "see a fresh new glimpse of the greatness of God." I have had a few "spiritual mountaintop" experiences in my life, where I felt surrounded by God's love and infinite power (usually on hikes or during worship services) but mountaintop experiences are just refreshers. Peter wanted to build a shelter and just stay up there but God told Him to remember what He had seen and share it with others. (Mark 9:2-13) Our peaks are just little glimpses at the God that we serve, to humble us and to remind us our lives are His to mold. The challenge the pastor gave was to remember our mountaintop experiences and maintain the change they made in us. Remember who God is on a daily basis and also what He did for us.