Spring Training and Parties = Brain Overload

I find myself learning new limits every day. When I was first diagnosed with brain cancer, my son’s sweet girlfriend, Marissa, found a book called Life’s Mountains by Cheryl Broyles, a woman who was living with the exact same diagnosis I had.
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Not only did she have Glioblastoma Multiforme, grade IV, but she had lived well beyond the 12-15 month prognosis.  This was the very first book I read regarding my illness and, unfortunately, the very first time I read/heard/absorbed the idea that my life in statistics should only last less than 2 years. 

I had told my doctors to zip it when it came to this information. I didn’t want some book telling me when the end of my life was going to be.  Though I’m a very strong person with a strong faith in God, I knew that some very dark days were ahead of me and I didn’t need to hear the ticking of that clock in my head during those days just because some stupid book said my heart was going to stop between this month and that in this particular year. 

This book was the best book that could have prepared me for the road ahead.  One day I was soaking in the tub, engrossed in the book when my husband, CJ, walked in and handed the phone to me.  It was the doctor’s office, confirming my referral to my neuro-oncologist at UCSF.  I got off the phone and returned to my reading.  Cheryl was walking into her appointment with her neuro-oncologist at UCSF ~ you guessed it ~ we shared the very same one.  I knew I was in good hands.

I’ve felt pretty normal lately.  I haven’t needed daily naps like I did when I was undergoing radiation and daily chemotherapy, though I’m not running any marathons either. I decided that a week in Scottsdale for a little baseball and some pool time with my sister, Susie, my mom, dad, uncle and his wife might be the perfect answer to these winter days. Though I was on chemotherapy when I went, I was feeling well and knew I would be in the best of care. Off I went for fun in the sun (HOT sun), loud baseball games, fun family lunches and dinners with friends coming by who were also in town for spring training. It was a week of hot, busy, loud, action-packed fun! 
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CJ and I had the opportunity to go to a high school friend’s 50th birthday party this past Saturday night. His sister and I were in the same class and were good friends as well and both CJ and I were looking forward to going. We waited to see how I would feel and were excited when I felt well enough to make the trip. It was a fantastic evening reminiscing about old times and catching up on lost years.

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It was a catered affair and the entertainment was lovely, with African drums and beautiful music. We said goodnight to make our 1-1/2 hour drive home. I woke the next day with the same feeling I did after my trip to Scottsdale; no energy whatsoever. I slept all day yesterday and all day today. The words of Cheryl Broyle came to me again from her book, Life’s Mountains, and it reminded me. She explained that brain cancer isn’t just a diagnosis that the doctor’s try to keep under control. I may feel well and look well but the truth of the matter is that my brain is damaged beyond repair. Healthy brains process multiple conversations and noise and music all at one time with no problem. My brain moves in slooowwwww motion with just one person speaking to me. Nobody would know this, because I keep up just as well as the next person. If there are multiple conversations to keep track of, I’m scrambled. If there is background noise and music, I have to listen in a hyper-focused state or I will not follow. To do this for 5 minutes is exhausting, but for a few hours is just paralyzing. This explains why I am completely knocked out after socializing for long lengths of time or in loud, crowded areas. I’m having trouble dealing with this, as I just want to be “normal”, but for now, I’m thanking God that I have the ability to be there to celebrate the milestones with my friends and the vacations with my family. I kept waiting for the Olympics to announce an event for “Keeping pace with conversation without anyone knowing it’s difficult”. They never did, but hey, it was Sochi. For the record, I would’ve won gold. ;)

Barbie Doll Days

Buildin’ up, Lockin’ down, Shuttin’ out, Standin’ my ground

When did this happen? Where did I learn that life is so different from those Barbie doll days? 

Red light green light, hopscotch, tag, family dinners, the ice cream man. 

There was no buildin up, no lockin’ down, no shuttin’ out or standin’ my ground. 

Life was so magical, carefree and perfect, my world was charmed in those Barbie doll days.

A Ken to my Barbie, two blonde babies to boot, our cup overflowed, we planted our roots.

It was all too perfect, I pondered aloud, when will the other shoe drop?

No need to build up, no need to lock down, no need to shut out or stand my ground.

43 years old, the doctor’s eyes locked on mine, “You have brain cancer, I’m sorry. There’s not much time”

My Barbie doll life came to an end that day, childhood fantasies filed away.  

One well worn tiara I’ll keep from the box to wear into battle as I fight the clock.  

I’m building up, I’m locking down, I’m shutting out and I’m standing ground. 

~Jennifer Jones~

March 22, 2014

 

 

Jealousy

I struggled horribly with this emotion in my teenage years.  It was my worst enemy.  Every girl I saw was prettier than me, smarter than me, funnier than me, thinner than me.  I just couldn’t “compete” in the popularity game, thus, planting the seed of self doubt. I did everything I could to make myself more tolerable to my peers, hoping I would be accepted warmly instead of ignored. I tried out for cheerleading and failed miserably because, a) I sucked and, b) I knew who the competition was and they were a tight group with sisters/brothers in the upper grades who were royalty where high school circles and proms were concerned.  I remember walking out of that gym past the other girls knowing I had just humiliated myself.  I also remember being somewhat relieved that I hadn’t made it because I was pretty sure my thighs would look fat in those cute uniforms.  I decided then and there that I may suck at cheering, but I did have control over what I put in my mouth and what I weighed.  From that point on I quickly developed a very bad habit of skipping breakfast, drinking only orange juice for lunch and as little as I could get away with for dinner. Before I knew it,  I could see all of my bones.  Mission accomplished.  Or was it?  I still needed braces and I still felt “lesser than” to the other girls around me. I still wasn’t popular, I still wasn’t smarter (looking back, less so), and I wasn’t prettier or funnier either.  Major fail, but at least, in my precious, warped, teenaged mind, it wasn’t a chunky fail, it was a skinny fail.

Thankfully, as I grew older and matured, all of this jealousy just disappeared as my confidence grew.  With age and marriage and children, I’d never felt more beautiful and I truly believed what I preached to my children, “Beauty is what is within your heart.” I felt beautiful inside and out.  I felt like a woman.

Cancer has robbed me of many things, but lately I’ve noticed that it has stolen yet another thing from me: My feminine confidence. I’ve been propelled back into that teenage world of jealousy and envy.  I’m envious of beautiful women.  I envy their hair.  I’m jealous of their health and vitality.  I’m jealous of their confidence to step out of the house and go about their day with all of the confidence in the world.  Where eye contact used to be a strong point for me, I now find myself with downcast eyes, embarassed by the fatigue they may show or my story they may tell.  I constantly wonder if the hairline of my wig needs to be adjusted and try to remember how it felt to run my fingers through my hair.  People often say, “Hair is just hair. It will grow back.”  I’m here to tell you that, no, it’s no “just hair”, and, no, sometimes it will not grow back.  I never gave any thought to it, as most women do not, but hair is a very big way to express  and feel our femininity.  In my case, the radiation was aimed directly at my right frontal lobe and the tumor was bombarded.  I was told there was a chance that hair may never grow back in that area again.  That radiation was 9 months ago and there is no sign of growth. How can you feel confident and attractive wearing a mask wherever you go because your white cells are so low that if you get the flu you will die?

I read this morning that Miranda Kerr, she of the Victoria’s Secret catwalk, magazines, etc., has been photoshopping her own pictures on Instagram.  She has gorgeous hair and a body to. die. for. (no pun intended), and. to my knowledge, she does not have cancer.  If Miranda Kerr doesn’t feel attractive in her own skin, imagine how I must feel.  More so, imagine what this says to all of those self-doubting teenagers struggling to accept themselves and love themselves just the way they are.

Looking back now, I’m proud of that insecure girl for holding her head up, walking in that door for cheerleading tryouts, self doubt and all and just trying.  That’s how I choose to live my life, no matter what.  Just try.

In My Dreams

 Well, I was finally able to put 2013 behind me.  It’s a brand new year and time to make some happy memories. I can’t say there weren’t any at all last year….2013 started out fun and promising with Ash and me dancing the night away on a rooftop in Los Angeles overlooking the Hollywood sign; she graduated from high school, Kyle was hired on as a correctional officer and made the huge transition from living at home to living on his own, Brent was inducted into the Bay Area Sports Hall of Fame, Adam and Julie got engaged, Adam graduated, Courtney got engaged, Ryan entered law school in Michigan and both Brent and Susie turned the big 5-0 with big celebrations!  Phew!  I know I forgot something but with this big ole’ hole in my brain I’m amazed I remembered even that much! Props, Jen!! :-)  (If any of that happened in 2012, give me a pass, mkay?) There was also a trip to Duke Medical Center that we took as a mini-vacation with CJ’s family and mine.  We met with a brilliant neuro-oncologist there who graciously decided to take me under his wing and calls me every single weekend to check on me. Yes, he’s a head neuro-oncologist at Duke and, yes, he calls me on the WEEKEND. Told ya’ he’s brilliant ;)

So those were the happy times and I cherish those dearly because they were few and far between in 2013.  Somehow I managed to keep a smile on this face of mine and one in my heart even through the darkest moments when bad news would be delivered. I look back on those early days sitting in my hospital bed right after diagnosis, laughing and joking with all of my visitors, as if I didn’t have a care in the world.  I honestly didn’t let myself go there.  I lived in the “here and now”, amongst the love of my family and friends.  When I got home, I had a family who I knew would look to me for their strength, so I held on to that strong Jen for dear life ~ not only for me, but for those who loved me.  I’m the vessel and they’re the crew….If I sink ~ we’re all going down.

I’ve been having some vivid dreams over the last few days. In one, there were two rooms and Ashley was in one at the age she is now (18); in the other room she was 2 years old.  I remember walking into that room and she was smiling that chubby, little baby smile at me, baby teeth, dimples and all. So angelic.  Her hair was as soft as silk. I remember walking into the room where she is her 18 year-old self and she had a button and if she pushed it, the 2-year-old would disappear forever.  I was in a panic that I was losing my baby and begging her not to push the button. I kept running back to the room where that angelic 2-year-old was smiling at me.  I kept touching her hair.  It was so soft and she would just smile at me with those dimples.

When I was 18 my aunt Barbara was dying of breast cancer.  They didn’t catch it until it was in the very late stages. I remember when she came for Christmas right before she passed.  She wanted to be with us so bad but she just couldn’t make it through dinner.  She was so sick and in so much pain she had to go back to bed.  I dreamt last night that she was at this year’s Christmas dinner and she was healthy and happy.  We were all speaking of that year she was so sick and how happy we were that medical advances had come so far so she could be there with us.  We all lifted our glasses and “cheered” to that.

I awoke happy to have seen my aunt smiling and healthy again, but sad that her breast cancer was diagnosed in the days when more women died from it than those who survived.  I also found myself thinking about how fearful I have always been to get breast cancer.  This morning, while thinking of my glioblastoma multiforme, I wish I had the choice to choose between the two.

I’ve lost my footing.  I can’t find my purpose. I do not have the motivation to eat much, let alone eat anything healthy, I do not want to get up and move. At all.  It seems that after 9 months of denial, depression has settled in.  Since I am not one to give up easily, I have asked for help and have been referred to a psychologist who specializes in the treatment of patients who have been handed my diagnosis.  The only issue I foresee is how to get myself off the couch and into the car to make it to the appointment. 

As Gloria Gaynor says ~ I Will Survive

A Lack of Words

I’ve been quiet for awhile here on my blog.  Actually, I should be more specific:  I’ve written several entries but had to make them private so as not to alarm those who are near and dear to me.  You see, I started this blog as therapy, as writing has always been a way to deal with various issues in my life.  It has helped immensely, but unfortunately, it’s not all sunshine and roses; some days are downright lousy.  It’s been been days like those that I take to the blog, get it all out, hit the send button and feel SO much better, not realizing how many people I just worried sick….until my phone lights up like a Christmas tree.  So, the last few entries I’ve written I’ve made private, but I by doing so, I noticed that I just didn’t have that sense of peace that I usually do.  For me, hitting that ‘send’ button was like letting the balloon go; I had just blown all of my worry, sadness, fear into this balloon and hitting the ‘send’ button just took it out of my life and out of my heart.  I felt free.  Keeping my entries private felt as if they were still a part of me.  I felt a prisoner to them. So here I am again.  I’ve made a deal with my family that if I need them or if I have a seizure or a medical emergency, I will call them and they agreed not to panic over my entries. So.  Here I am again…..with writer’s block.

Tired

I feel tired.  I feel like a rope in a tug of war.  I feel like I’ve been blindfolded and spun around and around and pushed off the edge of the Grand Canyon.  I feel like I do not have a destination.  I feel completely lost.  For the first time since my diagnosis 6 months ago I feel the weight of the fight dragging me down.  I feel like I’m losing ground.  I’m in a nightmare of voices all saying “Do this. Do that.  He’s wrong. No, he’s wrong.  You’re wrong.  Take this drug. Don’t take it. We’re changing it.  We need more blood. You need more tests.  You could have a brain bleed but then again, you may not.”  Yesterday was the first day I felt like I lost my will to fight.  I’m strong.  I know it will come back.  I just need to cry, but I’m strong so I hold it in. 

Mesothelioma Awareness Day

One of the many things I’ve learned since being diagnosed with brain cancer is just how big the cancer community is. We hear a lot about very common cancers, such as breast cancer, Susan G. Komen, and what the pink ribbon symbolizes, but rare cancers, such as mine, and mesothelioma are in dire need of awareness as well. Today is Mesothelioma Awareness Day and I am proud to use my blog to help educate those about this rare cancer and maybe help prevent future diagnoses. You may find a wealth of information here:

http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm

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