Update on The Waiting Game

I updated FB and forgot to update here! My neurooncologist read the radiologist’s report on my MRI and told me “Your MRI is superb!” :) I thank every one of you for your prayers – they are helping!!! God bless us all <3
Jen

Recuperation

Well friends, I’ve hit the wall. I knew it would happen but the party girl in me seems to have been sucked into one of those vacuum-sealed bags while we were packing and got lost in the back of a closet. Once found and unsealed – the attitude of the woman who emerged resembled Kristin Wigg in Bridesmaids (Ready to Parrrrrtayyy!!!) looking for two of her best pals, Rebel Wilson and Melissa McCarthy, aka Susie and Kathy. PUBLIC SERVICE ANNOUNCEMENT: No resemblance at all, though they are all beautiful women. Ya see, Susie has a way with accents that kills me, hence, Rebel. Kathy would give you a look like she’ll cut you if you piss her off but it’s really endearing and leaves me laughing and wondering what I would do without them. One teeny, tiny little problem: Between 5 days in Lake Tahoe followed by a 4-day visit from Kyle and his girlfriend, Marissa, followed by Rebel Wilson and Melissa McCarthy’s visit and starting chemo today, my brain is WAY overstimulated. :( The only way I can explain it is like a hangover with no alcohol involved and the need to sleep lasts all day :( Just stick me back in my vacuum-sealed bag and throw me in the closet till chemo is over, but this time don’t forget me cause I have another one of my best pals to hang with: Jeannie! Her title will be chosen upon departure :)

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The Waiting Game

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) :)

Toto, We’re Not In Kansas Anymore!

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!

A Piece of Me is At Peace Now

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. ;)

My Affair With Cancer

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. :(

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. ;)

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