Friday, April 22, 2016

UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There's a venus abnormality that they've been watching, but I'm not too concerned about it.

All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I've been eating horribly, including a 20 lb weight gain - pure sugar. I've always equated excess calories as food for the tumor so the fact that there isn't obvious tumor growth is a freaking miracle. Apparently diet isn't the end-all-be-all of cancer growth. (I'm sure it matters, but who knows how much, and for which cancers, and which people?)

I'm obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it's fun, not because I'm scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being "heathy", even though cancer has taken so much from me. From us. 

It's really hard to be fearless in this situation, and very hard to not get stuck. It's time for me to stop punishing myself for success, for my good fortune and hard work. I don't know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place, I realize it, but it's there nonetheless. 

On Wednesday, through the help of a girlfriend, I was able to take my nephew KC to We Day ( where I watched thousands of seventh grade world changers. The kids are fearless, they're kind, they're big thinkers and problem solvers. I'm going to try to harness their spirit and attitude to get outside of myself. When I get in a rut, when I feel paralyzed, I need to remind myself to find inspiration. It always helps. For being an extrovert, I can certainly disappear from friends, from family, I can get scared, and filled with denial and avoidance, and that's fine from time to time, but if we don't look out, and see what's around us, who needs help, how you can have a positive impact on those around you, then what's the point. 

I'm just really relieved about this first set of results, and grateful that I didn't shoot myself in the foot with diet and lifestyle choices. One of the saddest things that we can do in life is give up, or take our health for granted. I'm embarrassed to say that I feel like I kind of had. But not any longer. There's probably a fine line  between giving up and enjoying yourself, and one of these days I'm sure I'll figure it out.

Wednesday, April 13, 2016

Seizure Help

Hey Friends,

Here's the deal, I talk to a lot of brain tumor patients, and caregivers, about seizures. And although none are the same, there are often similarities, and definitely tricks. Even though each person's situation is unique, there is almost always overlap. Last night I received an email from a caregiver about his wife's seizures - a GBM patient. She switched from Keppra to valproic acid and vipmat several months ago, and had been fine, then twice in the past week she has had seizures. Each time she is forced back into the hospital is a major setback. She loses more weight (her weight is hovering in the 70's ), and becomes weaker. In corresponding, I asked him if I could bring it up for discussion on the blog, hoping that people could share their successes and failures to help troubleshoot. 

I feel bad because I've talked to so many of you about these issues, the side effects, the trial and error of seizure drugs, the specific triggers, but I can't remember everything that you all have said. Would you be so kind to share, even anonymously? I know it would be a huge help.

I remember when a caregiver told me that he gets his wife's blood levels checked regularly to make sure that her seizure meds are at the correct levels, not too high nor too low. When I heard that I was floored. I had no idea that your blood levels could be checked, or that every body metabolizes drugs differently. That it doesn't have to be trial and error, and it doesn't have to be a shot in the dark. The more we talk the more we know what to ask for, and how to help ourselves.

So if you could please share and answer as many of these questions, or whatever you're comfortable with, both he and I would be incredibly grateful (and please, elaborate, or share what you have found helpful if it hasn't been included on his list below):

My questions are this, if you don't mind:
  1. Do you get major seizures or minor ones?
  2. Do you go to the hospital after each one?
  3. What meds are you on? I see that you wrote about keppra and I think you got yourself off that but I'm not sure what you're on. Do you mind telling me?
  4. How do you think it works for you?
Here were my answers:
1. I have had a few grand mals, but now have simple partial seizures since I've been able to control them. I take lorazepam when I don't get enough sleep, I'm careful to keep my blood sugar stable, I drink a lot of water, I limit emotional and physical stress, I don't over do stimulation (sunglasses, overheating, loud noises). Every person's seizure triggers are unique. 

2. I no longer go to the hospital for seizures. I stopped because it seemed like no point, they just monitor me and pump me full of more drugs.

3. I've tried three different kinds and none stopped the seizures. I can't even remember which ones other than Keppra. So now I just take a lorazepam when I feel an aura coming on. 

4. I've been able to manage my seizures quite well. For example, I just had to do a minor surgery in my mouth which causes seizures, it's the epinephrine in the numbing shots which has been well documented in causing seizures in epileptics and I am no exception, so I took 2 mg of alozepram which is heavy duty Xanax and had no problems. Although I did sleep 10 hours afterward. 

Monday, April 11, 2016

Four Days of Freedom

The MRI is on Saturday, and with it comes phantom headaches, throbbing in the tumor cavity, dizziness, ravenous cravings, nausea, sweaty nights jumping up from bed. The usual paranoia.

I've been hiding for months, pretending I never got diagnosed. Pretending I could do whatever I wanted, eat whatever I wanted, drink whatever I wanted, live the way I wanted. And now I have to face the reality of whatever is going on in my brain. 

Which is nothing. 


A video posted by Jessica Oldwyn (@happy_coconuts) on

.........I still don't want to do it.

Friday, April 1, 2016

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

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