My why

Most people don’t know why I chose to go into the field of education. Why have I dedicated so much towards furthering my education and career.

My reason why is that the system failed me.

I began speech therapy with a private therapist and then once in the public school system slapped with the title of “Special Ed”. With this came pity from many teachers and almost an unwillingness to push me further after all all special education students were treated with a certain stigma in the 80s and 90s. The stigma told over and over was that I was unable to do anything for myself and I was not smart. There’s a lot of things that happen when your teachers, counselors and even principals tell you to get a job where you don’t have to talk. Where you can hide and be a mute all day. After all, special education was considered to be subpar to everyone else.

The difficult part is that I believed it. I believed that I wasn’t good enough to do what I wanted to. I believed I should be ashamed of who I was. The resulted in stumbling through elementary and middle school with mainly Cs. I wanted to be one of the “smart kids” but was told I didn’t have the intellectual capacity.

In high school there was a college night and I fell in love with the brochures from Princeton, Vanderbilt, and Duke. They were nice colorful brochures, but in order to get anywhere I needed to pull myself together. What happened was that I started to fight. I insisted on attending every ARD meeting. I took almost every PreAp and AP course offered. When the report card came out and said “AP US History-Modified” along with that same label on all my other classes I immediately demanded that they be taken off. I was not going to receive special treatment. The only modification was extra time speaking in all 5 years of French class. A class I insisted on taking.

Several people thought I couldn’t make it. That opinion made me so mad and upset that I wanted to prove the, wrong. When I was told over and over that girls, especially a special Ed girl couldn’t do math or science, I went after engineering and eventually mathematics at one of the top schools in the state. When I thought about how much I had to advocate and fight every day during my schooling to receive a quality education, I knew that I wanted to go into education. I wanted to be a role model to my students that anyone can do what they want to do. It may have taken 50 resumes, 12 interviews and one job offer as a first year teacher. But I took it. Nothing and no one was going to stand in my way.

Still I felt the shame and stigma. Every laugh, joke, hung up phone call, everything was humiliating. I kept battling this for several years, some better than others. The fight and needing to constantly prove myself was difficult. There’s a quote –paraphrasing here, that the object that blocks your path is your way. Sheer determination pushed me, but acceptance helped me find my path. I’m proud to have some good and some bad days with my speech, but I’m still here. By being here and my authentic self maybe it’ll inspire others to be courageous. Maybe I’ll be a role model, voice, and advocate for the millions of students labeled as special Ed in our educational system. When your passion and determination are there nothing can stand in your way.

Why do I share this? Because if it inspires one person then it’s worth it. It’s vulnerable and opens up some deep wounds, yes. But it’s authentic. Yesterday I was sitting in my child’s own ARD advocating that he be treated and recognized for all of his abilities, not disabilities. My other son in 4th grade wrote an essay about how I was his hero, not Spider-Man or batman, but me. It’s truly humbling. He has seen so much and that’s made him so compassionate.

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“Good Enough”

What does it mean to be good enough? Who defines it? Is it the houses, cars we drive, materialistic things we own, our career? The funny thing is that the majority of people tend to think if I have this house, or this outfit, or this promotion then I’ll be good enough, then I’ll be accepted.

But what if that isn’t the case? What if no one is really looking or judging you? What if you enjoyed the journey instead of trying to speed to finish something? I caught myself doing this earlier this week while reading a book. How many pages are left? Can I finish it tonight? I wonder if I read it a second time at a slower pace, without an efficient timeline that I would get more out of it.

The fact is-that I’m still learning is that the only person I need to be “good enough” for is myself. I can define what that looks like and was it means to be successful. I can define who I am, no one else has that power. The question is what do you want and how can you make it a reality?

I have so many stories where I’ve felt not good enough because I was trying to impress someone or I was being over critical of myself tearing myself to shreds. It takes daily reminders, mindfulness and time but I’ll get there. Until then I’ll enjoy the journey.

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Acceptance

I’ve been reading a lot personally and professionally. Both discuss the idea of change and that it’s inevitable, that’s life. Nothing will, last forever. One of the books I just finished was “When Things Fall Apart: Heartfelt advice for Difficult Times” by Pema Choldon. This was recommended to be by a colleague who is always very calm and composed. She didn’t get worked up when things changed and embraced it. Somehow I knew this was the direction I wanted to go.

I made a decision to take better care of myself. This included physical things such as taking a ton of vitamins, morning/night face cream, allowing myself some indulgences, not obsessing over a certain weight or pant size-what matters more is being healthy and feeling good. I used to think if I was a certain weight, pant size, had a certain purse, or suit then I’d be happy and accepted. The truth that I now see is that none of that matters. I’m meditating daily and working on staying in the present moment. This means not jumping ahead to the “what if’s” and not dwelling in the past. It’s a long journey but one I feel I need to make.

In my professional career I’ve always been ambitious and had a plan since I was in college on how I would get there. It took some work but starting to realize that the journey is the goal. There is no “you’ve made it, you’re finished”. Instead it’s about growing. This sounds like a simple thing to accept but for someone who wants to “better themselves” as if there is something wrong with them, this is quite a shift. It’s acceptance.

Acceptance in doing your best but also realizing that life has suffering. There is no escape from it. Maybe the best thing is to embrace instead of run from it. I’ve had to reframe my beliefs of accepting help as being weak. I’ve had coworkers and neighbors bring my family dinners and help with yard work in the 105 degree heat. My oldest having six weeks of great therapy and talking about cancer has been a blessing and I’m glad I accepted instead of pushing away help.

For the majority of my life I’ve fought against everything. Maybe stubborn, but I could never accept or be happy with myself. Chasing materialistic things hoping it would make me feel whole and happy. This shift through accepting me as me with all the ups and downs has brought great relief. I’ve felt shame, humiliation, anger, and self-hate over not being able to “fix” my speech impediment. It has caused great emotional pain for over 30 years. For the first time in being open and vulnerable I’m able to acknowledge that and accept myself. To be at peace with who I am.

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Two Weeks Notice

You usually hear about the final two week count down when expecting a baby, maybe the number of days before a vacation or starting a new another job. During those two weeks time seems to slow down. For me it’s two weeks till my next set of scans at MD Anderson. This is the big one and in the “cancer bubble world” they call it scanxiety. The anxiety leading up to scans. So much depends on these results and there’s not a whole lot you can do about it. Like waiting in line at Disneyland as a friend put it.

I’ve been off my infusions for a few months now on doctors orders and my immune system is being built back up. The big question is will the three tumors in my brain be stable again-like they were in June, or would they grow/shrink? What about the lungs, are they still gone/going away? So many questions and it’s easy to get overwhelmed and lost. It’s easy to lose hope and skip to the what if’s. Its easy to fall and fall again and fall again. But there is hope, no matter who far or how many times you’ve fallen there’s always hope. No matter what I believe it you look for it there is hope.

It’s been a difficult journey to say the least, but I try to ease the worry and anxiety. from trying to eat healthier, meditation, essential oils, vitamins, reiki healing, and traditional and non-traditional therapy. Whatever it takes. Does it really matter if this is “fixed” with the immunotherapy or my non-traditional methods? Really don’t think so. Maybe it’s a combination, again who cares. No matter how many podcasts I need to listen to or books I have to read it doesn’t matter. What does matter is being in the right frame of mind. Whatever comes will come and the next step will be taken at that time. Living in the what if’s fuels the anxiety as depression. It’s okay to acknowledge both but then look for the hope. Do what you need to do and keep going. For me no matter how many times I’m kicked down and beaten, I stubbornly get back up again. So why would this chapter with cancer be any different?

So there’s my two week notice and I’m going to keep going.

“Daring Greatly” by Brené Brown and Vulnerabilities

It’s not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.

The credit belongs to the man who is actually in the aren, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again,

Because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause;

Who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly….”

–Theodore Roosevelt, ”Daring Greatly” Brené Brown, pg. 251

I’ve been a fan of Brené Brown and have just finished “Daring Greatly”. She’s coming to Austin this Fall for the Women’s conference. Managed to snag a ticket literally as I was being hooked up for my second round of chemo. I was not going to miss it! The hook is talking about things that we as a society don’t normally talk about.

”Sometimes the bravest and most important thing you can do is just show up”, Brown, 243. So here I am showing up and reveiling the (wo)man behind the curtain. To do so we must open ourselves up and be vulnerable.

What does it it mean to shed our armor and be vulnerable? To reveal the truth behind our struggles and triumphs. An underlying theme of many of the self-help, personal growth, and leadership books is the idea of being authentic. By being your authentic self you’re more approachable and don’t need to ‘put on an act’ or to be invisible. Most of us want to appear perfect and be Superwoman/Superman. We can do it all, balance everything. What is reality though and why is there still disappointment and shame when we don’t live up to these false expectations?

Laying it all on the line. Taking the plunge. Putting it all out there. What’s the worst that can happen? Well if you’re most people a million reasons immediately flood your mind. It’s easier to stay safe and blend in than be bold and take a risk. Why does fear hold back so much risk and reward? Do folks not like change so much that the status quo is a much safer option? Or is the real fear that it may be rejected or not good enough?

There needs to be a strong drive and reason to challenge your own preconceptions and take that plunge. I guess that’s what I’m starting to do right now. I’m laying out my experiences so others can learn from them and know that they are not alone. Is it scary? A bit, but what’s the alternative that lots of people around the world believe that they too are alone or no one understands what they’re going through?

As a personal example, I was bad at math throughout school. Even that last sentence is wrong, I was told again and again I was bad at math. I felt shame at never grasping the concept fast enough, not knowing the answers when the teacher called on me, or failing test after test. My teachers were content with me barely passing with a C. This is partly due to the special-ed label and being a girl that I’ll get on that soap box another time. Math was a perceived weakness of mine and I needed to spend multiple hours working problems on a 8×10 dry erase board I had hung up in my room. Next to the NSync poster of course. It needed to become my strength. I needed to be better and prove everyone wrong. I hated the struggle and the humiliation of not being good enough. So what did I do? I insisted on taking the most advanced math classes (barely scraping by), getting a Bachelor of Science in Mathematics from the University of Texas at Austin, taught math to students in grades 7-12, and later went on to earn two masters in ed action and lead mathematics for a school district. 20 years ago no one would have thought or expected this. There were no expectations from the school. So why did I do it?

One I wanted to prove the teachers/counselors/principals/speech therapists/classmates who told me that I wasn’t smart enough and that I could do it, that I actually could and did. Secondly I knew that humiliation and shame of being a second class student and being labeled as special ed in the 80s and 90s. Teachers lowered their expectations and the group of us-no matter the labeled disability everyone was seen as incapable. I wanted to help all students not struggle the way I did. To not let their label dictate their perceived opportunities in life. By struggling myself I knew how to break down the concepts and make it easier for others. I had developed empathy and would be the school advocate I never had.

“Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness we’ll can be be present with the darkness of others. Compassion becomes real when we recognize our shared humanity” Pemba Chodron.

Proving people wrong, those who have told you that you can’t do something is fun-I’ll admit that. But when does it become enough? How much do you have to prove to them and yourself? It’s a monster that grows. One day you may realize you never had to prove anything to anyone. Would it all have been worth it? What if you did something not to prove it to anyone including yourself but just because you wanted to?

A few random thoughts as I finish up this book and go on to the next.

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MD Anderson and the First Infusion

This place is like a fortress. It’s spoken so highly about around the world that you think you’ve arrived at the pearly gates, which hopefully you haven’t yet.

Each type of cancer has has their own area and team of nurses/doctors. It’s easy to see who has the same type of cancer you do and identify their symptoms. You can also see in their faces where they are emotionally. It’s very draining but one of the very few places where there’s true empathy. Bonus, they had good chemo friendly food and even a chick-fil-a on site (always a highlight).

The first day is always an endless stream of tests, blood work, and doctor’s visits. During my initial visit in March doctors had hoped to have me enrolled in a late stage trial. The trial would mean not paying and a good chance of success as most of the kinks were worked out in earlier trials. One of the conditions of being in the trial was to not have brain tumors to be in the study. No problem I thought confidently. They only found them in my lungs. A few weeks later I was scheduled for an MRI brain scan and to begin the trial treatment infusions just a few days later over Spring Break. The MRI scan usually takes 30-40 minutes where your head is completely surrounded and you can’t move. High pitched sounds echo in your ears. The only way to not panic is to meditate and leave the world behind. Sitting on the doctor’s table I was anxious about starting chemo infusions. What would it feel like? What reactions would I have? When would I see results?

My original doctor was on vacation and another took over. She had a third doctor come into the room to explain to me that I wouldn’t be receiving treatments that day and a 3mm brain tumor had been found. Didn’t qualify for the original study and another required a larger size brain tumor. The suggestion was to begin treatments in the usual way. I wanted to begin these right away.

During this time Brandon was also still looking for another job andwould soon be changing companies. This meant changing insurances and having a new set of deductibles to meet. I pushed to get the first treatment round covered by his old company. This gave me relief as I was doing something. With MD Anderson being in southeast Houston and us living 2.5 hour away I asked to have my infusions done at home and continue to see doctors at both places. Scans and treatment plans would all be done at MD Anderson.

The first infusion was scary. I arrived half an hour before they opened and saw a room of 60 reclining chairs waiting for the day’s patients. They came in slowly with the same look of resignation. They dozed off or stared into nothingness. Somehow those thoughts come into your head of why am I here, what did I do to deserve this, I’m too young to be here. Those questions and thoughts have no answers. During the first infusion I stared at the clock counting the minutes till I’d be through. Till I could say that I did it, I survived my first round.

After the first round I made it a point to make eye contact with someone else receiving their infusion and smile. It may not have been much but it said that together we’ll make it through this three hour hell.

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The Call: You Have Cancer Again

February 2017

Some time had passed since my round with cancer. It had become part of the past and I was moving on and eager to forget.

One morning I went to work and shortly after I arrived I had a searing pain in my right side. I tried to brush it off but coworkers insisted that it was appendicitis and it could rupture at any momement. I went to the doctor and had some scans done. The next day I sat with the nurse as she told me that there were two kidney stones stuck together and they needed to be operated on right away. Is that all, Kinsey stones I’ve got that. No big deal just give it a few days, she also very casually mentioned that there were a few lung nodules that showed up on my scans. I immediately freaked out and asked her about them. She said they were most likely from a cold but since I had a history of cancer that they’d fax them over to my oncologist. In that momement I knew it had come back. The nurse couldn’t understand why I didn’t care about the kidney stones and insisted it was a top priority. Never went back to that office again.

I visited the oncologist a few weeks later where they ran more scans but the nodules were too small. They would run more CT scans in three months for more information but there was nothing to do but wait. Three months went by, another round of CT scans showed growth and more nodules but not the 10 cm needed to biopsy. Come back in three more months and don’t worry about it they said. Three more months past and it was more of that same I had nodules ranging in size from 3-7, still too small to biopsy so no treatment. Just waiting. The waiting game takes a toll. You want to pretend it’s not there but it’s always in the back of your mind. In January another round of CT scans, it had almost been a year since the nodules were first accidently noticed while looking at my kidney stones—I believe there are no accidents. The nodules weren’t quite large enough to do a biopsy and they wanted to wait three more months. I was tired of waiting and wanted answers and to begin treatment. I opted to do a riskier needle biopsy on one of the larger nodules. I’d be wake for the incision. The oncologist said there may not be enough sample to make a determination. That didn’t matter, I wanted and needed answers.

On February 14, Valentine’s Day they stuck a needle in my lung—hows that for irony. I was home for a day then back to work anxiously awaiting the results. I hoped for the best, nodules from an old infection or cold. Somehow in my heart though I knew.

The call came as expected and confirmed Melanoma in my lungs. Based on the biopsy they said there were multiple tumors in both lungs. Doctors call them nodules instead of tumors. Maybe the thought is that it sounds not as scary. I gathered up my things from the meeting I had stepped out of, went to my office and still crying called MD Anderson for an appointment. I could have filled out a form and waited for them to call me, but there was not time to waste. This was a step I needed to take now.

In such a short period of time I had gone from stage 2B with doctors who told me to “go live my life cancer-free” to having it come back in my lungs as stage 4. What the hell happened to stage 3? Why didn’t they stop it? There was time. So many questions and I was walking a very tight rope. I had hesitations about going to MD Anderson. In 1989 my grandfather underwent treatment for cancer in Houston and passed away after a very short time. At seven years old that left a big impression on me. I wanted to stay away from that place and find my own way. Now approaching my 36th Birthday I had to make my peace by visiting my grandfather and going to see MD Anderson doctors with an open mind. The research I had found online stated stage 4 patients had a five year survival rate of less than 10%. Ten percent, what was I going to do with that. It’s unacceptable. No matter what fears I had to face or treatments I was not going to resign myself to statistics—-despite being a former AP Statistics teacher. The fear was still there but each day I faced the uncertainty determined to somehow make it through. 3869B7DD-408C-4382-A76D-E6BE9A257115

The Call: You Have Cancer

Moles always had decorated my body. They were just part of who I was and when young was told all of them were harmless.

In October 2015, I finally made time to go see a doctor to have three removed. One in the middle of my back had gone from being itchy, to the occasionally bleeding, sore, and peeling. It sounds horrible now but these would occasionally happen over the previous two years so I didn’t think much of it. Besides I had time to take care of it. The doctor did a biopsy and said they’d call me in a few days but not to worry. The call came a day later when I was in a meeting room at the high school. I went to the window with paper and wrote down the words “Malignant Melanoma”. I also had appointments already scheduled the next day with a dermatologist, oncologist, and surgeon. They were going to operate within a week. This was intense.

In an instant everything had changed. You begin to google everything from treatment to life expectancy. Friends and family surrounded and encouraged me. They didn’t know what to say but just having them there during such a scary and uncertain time meant everything. They all told me that they’d be there and how much they loved me. In my search for meaning in the cloud of emotion she I sought out to find one thing I was grateful for each day. I kept this up and posted pictures unltil after the surgery when it became hard to move. I didn’t know till years later how important this one simple task was to do everyday.

The operation was out-patient. Operation a few hours and I’d be in recovery for a few weeks. Doctors tested both lymph nodes under both my arms to determine just how far the cancer had spread. Thankfully there was no lymph node involvement. The incisions left me with scars and a numbness that never goes away under my arms. Battle wounds but a small price to pay. I left with a 5 inch incision in the middle of my back so they could get clear margins-clear out all the cancer. The samples were tested and it was determined that I was cancer-free. I had beat stage 2B Melanoma. The next few weeks were spent lying in bed or by the fireplace just sleeping or waiting for the pain meds to kick in. It took some time but I got better and was thrilled at a new chance at life. I would receive follow up scans every 3 months, then 6 months, then each year. But the important part was that I was free.

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The Journey

Featured

No one truly knows your story unless you tell it.

I’m starting this blog as a way to document and appreciate the daily ups and downs that comes from living with cancer. The path is never easy. Like life there are tears of happiness and sorrow. There’s so much that people don’t know until they’ve lived through an experience. I hope through these posts to inspire, motivate, and educate.