It was MRI day yesterday, the day that brings every GBM patient anxiety to the point of full on panic attacks. It’s the day that you get to walk up to the window of your brain and they open the curtain and shine the light on what this fast-growing cancer has been up to since the last peek. Questions are finally answered temporarily and, if in your favor, you get to breathe deeply for another month or two. So I sat there, while my neuro-oncologist pulled up my scans and compared them to the last a few months ago. The picture from May showed the black hole where the tumor was removed. The new picture showed that the hole was no longer black. I’m not a doctor, but even I have seen enough MRIs of this black hole to know change is not good. The doctor was quick to say that, even though the radiologist report was not in yet, she did not think it was tumor growth, but possibly blood filling the cavity. She couldn’t be certain without the radiologist’s report, which will come in today, but of course, she is out of the office. Tomorrow I will know what I’m facing. More waiting, more wondering, more Xanax, forever prayer. May the odds be ever in my favor. (LOL…sorry. Had to break the doom and gloom with a quote from a movie I relate to ~ The Hunger Games. Somehow I feel I identify with Katniss fighting for her life ~ but duck if you ever see me with a bow and arrow) :)
It’s hot. No, not hot. H.O.T. Come to Arizona they said. It’s a dry heat they said. They failed to mention a little thing called monsoon season and a little thing called HABOOBS. Yes, you heard me correctly. Do not ask me to repeat myself. In short, they are enormous (stop it – stay with me here) DUST STORMS people! Where did you think I was going with this? Hmmm? When these monsoons roll in, the wind,lightning and haboobs are quite enteraining, but dry heat? HA! My Weatherbug app had the humidity at 53% and there wasn’t a drop of rain to be seen or felt. The cacti loved it. What’s left of my hair was showing it’s dismay. Okay, now that I’ve had it out with the monsoons and haboobs, I’ll give ‘Zona it’s due respect in that it is quite a dry heat most days and I do appreciate that when the temp spikes as it will this week to 115 (thank you, Weatherbug). :) This makes it possible for this avid shopper to enjoy her hobby since, as I’ve come to find, Scottsdale is my version of Disneyland Coutour. #IcouldstopbutI’mnoquitter ….There is nothing I cannot get here. And the choice of dining is ridiculous. If I ever eat at the same place twice, ship me to Seattle where it rains every day (my version of hell). One thing I have a love/hate relationship with’Zona on ~ you’re shamed into keeping the scale in check cause nobody in this damn city wears anything but gym clothes or bikinis. Sometimes a girl just wants a cheeseburger and a martini or three!
It was about 11 years ago that we moved to Roseville and I met CJ for lunch at Applebees on our lunch break. It was then that he first mentioned the possibility that his company may move out of state. I shoved that thought in the very back of my mind, unable to fathom the idea that this California girl, her California man and their California babies could live anywhere other than, well, California! Fast forward 11 years and one whopper of a cancer diagnosis so big, it has its own nickname, (The Terminator), and your priorities kind of change. I went from, “I can’t move!” to “I have to move my family. Now.” You see, I have been desperate this year. I knew this move was coming down the pipes, but whereas in the past I just wanted the reality to come at a later date, now that I knew it was close, I had a frantic need to settle Craig into his long-term home; a place I know he would feel comfortable, a place close to my sister’s vacation home so he has family nearby when they come to visit, a place with a woman’s touch to give it a warm feel and a place where my small family can come together for a Superbowl and reminisce about my famous french bread-wrapped spaghetti, 3-tiered homemade pecan cake and how I could get downright LOUD and OBNOXIOUS when my team didn’t have their head in the game! LOL It feels good to inhale and exhale now that I know where my family will be. God willing, I’ll be here to cook and bake so they don’t have to remember too soon. ;)
It wasn’t long after I was handed my sentence that my husband, CJ, first said to me, “Our life will never be the same.” It didn’t register with me in those early days, as nothing really did. Shock has a way of rendering you deaf and blind, numb and paralyzed. My only thought was, “I’m fine. Smile. Laugh. They’ll see it’s not so bad”. Denial. It’s been a long year as I look back, having “celebrated” my 1-year diagnosis April 22, 2014. It’s funny to use the word “celebrated”. I’m certainly celebrating that I’m still alive, celebrating that I’m not in those early pre-surgery days, but I’d prefer to have a day I could celebrate being cancer-FREE every year.
Looking back on the year and where I am today, CJ is right. Our lives HAVE changed and I suppose it never will be the same as it has been the last 29 years. This is a huge loss for us. For me, I wake up every day searching for anything I can cling to that will give me a sign that I have some energy, which will equal motivation. These are my “good” days. Cancer is my constant companion of which I cannot free myself. I believe CJ feels I was taken from him and, in a sense, I was in a very heartless way. I used to be so vibrant and healthy and now, we can’t just take off on a whim and go somewhere, I have to look at my calendar and see about chemo, knowing I’ll be drowing in a sea of exhaustion for 8 days, popping anti-nausea pills to ward off an unannounced vomiting episode. I have doctors to consult with, appointments to make and/or cancel, MRIs to attend to, infusions to sit for, prescriptions to refill every other day. If we do happen to get away from our regular routine, chances are good I will forget to take my morning medication, which is only remembered due to adhering to my strict schedule. When we do get to go have some fun, I can only take so much before I need a nap.
CJ is so strong and accomodating, always putting my needs first. When you marry somebody, you take the vow, “In sickness and in health”. You never really know how your spouse will handle taking care of you when the chips are down. I’m here to tell you that I won the grand prize. CJ spent days on end by my hospital bed just keeping me company when there was absolutely nothing to do and I was stable. He would get up early to be sure I would wake up to Starbucks in the morning. He drove me to the endless appointments and very carefully washed my hair of the dried blood around the surgery site of 47 staples when I got home from surgery. While doing all of this, he picked up my prescriptions, cleaned the house, took care of the dog, paid the endless bills, did the grocery shopping, made arrangements with Social Security and made all of my appointments. All of this on one man’s shoulders. How did I get so lucky?
Tears spring to our eyes easily as we discuss our loss. There was our life BC (before cancer) and our life AC (after cancer). It’s been a year and we miss our life BC so much. How we wish we could go back to what we considered to be “problems” then (traffic, carpet stains, college costs, computer viruses). How I wish I could work so it didn’t all fall on CJ’s shouders.
I feel as if I’m having an affair and that the intruder is cancer. I feel guilty putting CJ through this kind of pain. I know I don’t have a hand in this, but there is a part of me that wants to shake myself and say, “Jennifer! Toughen up and fight through the fatigue! Don’t let cancer do this to you or CJ! If you drop, you drop.” My heart bleeds for my husband. :(
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.
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!
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.
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. ;)
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.
March 22, 2014
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.