Guest Blog Series - Lone Wolf

Several days ago, a girlfriend shared a brilliant idea with me. She said, "What about guest blog posts?" It came as a solution to share other people's stories since I get sick of writing about me. You'd normally never hear about any of these folks because unlike me, there are people who fear repercussions from being honest about their diagnosis. And sadly, from the stories that I've heard, their often not wrong. Once we know something about a person, we can't un-know it. And that becomes an issue regarding employment; our stories change how we are viewed. 

You guys know me, I have no filter (or a very weak one), and I just speak. But there are times when I've regretted writing this blog. It's rare, but it happens, and it's because I know that the interwebs are eternal. If I apply for a job, there is no hiding my story. I can't disguise what I've gone through, the deficits I deal with. For certain lines of work, it's unappealing for employers to hire cancer patients, especially depending on the specific diagnosis, and prognosis. It's just a fact. Anyway, I reached out to one of my tumor friends, one who is living in solitude with her diagnosis. 

My goal in sharing these stories is several fold. I want patients to have an outlet, to express themselves anonymously. I want to give a voice to different stories so that people learn the dynamics of disease. I wish life was easier, that we could all share our truths openly, but if we can't, at least we can have a format to do that here. I have no idea if there will be others who would be interested in sharing. I really hope there will be more patients, caregivers, family members, friends, etc. that would be interested in sharing their views, their experiences. I wanted to provide this slot for guest writers, because I get to hear these amazing stories, and I learn so much. It makes me a better person, it helps me understand the myriad of lives on this earth. The more I learn about other people, the more compassion I have, the more I can love deeply and be patient, and kind. And it's interesting to hear what other people go through, to hear their perspectives. I hope this provides a benefit to those who choose to write a guest post, and a benefit for those who read them. 

The goal is to start by publishing a guest post once a month. Please let me know if you would be interested in contributing. Let me pull from two posts ago, "your story is enough". Let's learn from each other. I hope you enjoy.

"I love trees, especially when seasons change.
I love their stability, strength, and endurance." - Lone Wolf

“My Story”

So I am sitting here thinking …. “This is the first time I am going public about my diagnosis and yet I am using a pen name…ugh.” There is a reason I assure you.. Ok … So where do I begin? Honestly, I am not sure where to start. I guess I will start on the day my life changed forever, but first let me provide a little history. I am a 30 something mother of young children. I am a licensed mental health therapist, and I have been married to my high school sweetheart since, well forever.

On April 2nd, 2013 I went to the ER because I was having a pretty bad headache. A few days prior I hit my head very hard on our glass shower door. Of course this was because my puppy was up to no good and I went to quickly check on her and BOOM … there goes my head. Anyway, due to the headaches, my husband suggested I go the the ER in case I had a concussion. The ER visit went from “hey your young but let's do a CT anyway to now we need to do a MRI.” Honestly, I thought that I had bleeding in my brain and I was terrified. After my MRI, the doctor returned, and the nurse took our kids out of the room. I began to cry before he spoke because I knew it was going to be news that would forever change my life.

I will never forget that the doctor sat very close to me and said, “You either have MS or a brain tumor.” My husband and I sobbed for several minutes, but then I quickly remembered that my children are down the hall coloring and I need to be strong for them. I had to be!!!

Through time I visited several neurosurgeons, neurologists and neuro oncologists. Hey, I was on an interviewing tour. Remember we pay them!! After speaking with several specialists,  I was preliminary diagnosed with a low grade glioma. You may be wondering if I had any symptoms. The answer is no, not one. The neurologist did put me on Keppra (anti-seizure) just in case. However, three days after I decided to stop taking it I had a small focal seizure in my right arm. So my neuro oncologist decided to take away my driving privileges. Of course I would NOT let that happen!!! I have three very active kids. Therefore, on July 1st I chose to have an awake craniotomy. Ok … I have to be honest here; my two c-sections were more uncomfortable and nerve wracking compared to this craniotomy. All in all, the craniotomy went well and I had over 90% of the tumor resected. 

So pathology .. What's the news? Diffuse Astrocytoma, Grade II. Now this is when my dear old friend Google became my worst nightmare. Search after search said I was going to die and worst of all the time frame in which I can die varied. So here I am “the mental health therapist” that has dealt with everyone else’s crisis now in the middle of her own. Yeah .. I know all the coping skills, to accept what you cannot change, to move forward not backward, to reach out for help, to assess signs of depression and anxiety, etc. However, during this time I was literally a “hot mess.” I was on roller coaster of emotions that never stopped. I couldn't sleep, I couldn't look at my beautiful children or husband, I couldn't look at the sorrow on my parents faces. It was such a dark place in my life and I refuse to go back there. It took so much time to get from there to where I am today. I would love to share this in posts to come. However, I say that the one thing that ignited change was when a woman told me that I live in a house of depression. This shook me to my core. You see as a therapist I have worked with many children and see the ripple effects the parents actions can have on them. At that point, I became stronger, a fighter and a thriver. I have met amazing people along the way, including Jess. Jess and I have a lot of similarities, including diagnosis, but we are similar in one very important aspect … Yes we still live in fear of the unknown but we live, love and laugh as much as we can because guess what … no one makes it out of this world alive! So maybe, and that's a big maybe, my time is shortened but having to face my mortality everyday gave me the beauty of living in the moment. Ok .. Ok .. I can go on about that forever so instead I will address why I have a pen name.

When I was first diagnosed, many people I encountered felt sorry for me. They pitied me. Every face I saw had sympathy written all over it. One thing about me is that I have always been a go-getter. You know, nothing can stop me!!! However, I began to notice that their pity weakened my strength. It just dragged me down. Let me tell you, as a therapist, I  am highly trained on empathy versus sympathy. It was interesting to experience the two first hand. This actually helped me to become a better therapist. So after this experience I limited who I told. I never EVER tell my clients because their sessions are about them … NOT me!! Also, my job doesn't have a clue. I want to be seen as a qualified therapist and not “the woman with a brain tumor.” Oh and get this,  I use medical marijuana. Yeah … Not such a fun conversation to have with parents at one of my kids next game! So, for now, I have a pen name to protect my job, my license, and my children, but as my sister in law always says “I cannot wait for your ‘I’m coming out party!!!!’” Me too!! This baggage is too heavy for me to carry, BUT if I face sympathy, pity or judgement this time around I will be well prepared to point to where the door is!!! As someone I love always says to me and now I say to you, “Light and love.”

- Lone Wolf

Hair Envy

Pantene shampoo commercials are taunting me. I'm seriously starting to get hair envy. I've had long hair my whole life, and I'm starting to realize that it will take several years to get back to my normal hair. Ouch. It's the little things that ground you back into reality. Oh well. Worse things have happened...literally.

I wonder how my hair will grow out with this massive scar. I'm I going to be able to comb-over my scar like Donald Trump? I basically have a center part due to the scar, but I'm more of a side part kind of girl. I'm not going to lie, I seriously worry about my hair. Foolish, yes, but I am a woman, and us women want to feel attractive.

Seriously. What the heck am I going to do with this scar? The good news is that my makeup covers my braille face. And it's getting a lot better. I guess I need to deal with one crisis at a time. 

Did I mention that my first brain surgery was an awake craniotomy? I keep dreaming about the part of the awake surgery, the conversations, what it looked like, the whole thing. I've got to tell THAT story. Now, for a nap.

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.