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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Unstoppable

The past few days at MD Anderson have been exhausting. You never know what tests will show and there’s nothing you can do but wait and have faith.

I’m absolutely thrilled that I received some of the best news. My lung tumors that had decreased to very small to immeasurable in June are now all completely gone. Even after stopping meds they went away completely and there’s no remnants left.

Two of the three brain tumors have faded dramatically. The third one is 3mm is stable (which is a good thing) and may have decreased in size. They’ll follow that for awhile. It could be scar tissue, but they’ll continue to follow it to make sure it doesn’t grow.

This news brought tears to my eyes and I’m beyond elated and grateful. It’s another step forward. I’m still healing and the immunotherapy has replicated itself and “taught” new cells how to fight off tumors.

I’m truly fortunate to have the combined efforts of modern medicine that wasn’t available just a few years ago and the prayers, positive thoughts and energy of so many. I also want to thank my coworkers and neighbors who have cooked meals, pulled weeds, and spread mulch. The last two when the HOA started sending letters. I’ve always relied on myself to push through anything and to fight till the very end. But these last three months I’ve been very accepting and have been healing. It’s been a journey that will continue.

As far as the cancer, I can’t say I’m in remission-that will be in two years and I’ll have scans every 3 months, then 6 months, then yearly the rest of my life. I also can’t say that I’m NED (No Evidence of Disease). But what I can say is that I’m getting better everyday and that gives me tremendous hope.

I return to work in just over a week. I expect change, but then so have I. So lookout world, I still have plans and a lot of work to do.

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Darwinism and Alaska Shows

I love Alaska shows, especially “Life Below Zero”, because it makes you question if you yourself could really live in that extreme environment. Now I’m sitting in Texas at 103 degrees with AC on full blast. But the question still bakes, could you survive? What are you willing to do and if necessary give up to survive? For those of us that remember the Oregon Trail game who made it to the end? Is it Darwinism at its finest? Would and could you be able to adapt to survive to a new environment? Think of the extreme Alaska show and everyday real life.

Maybe it’s the idea of rolling up your sleeves and doing whatever it takes. Holding yourself accountable for what works or what doesn’t. I’ve never had to hunt for food, but would I do it if necessary. Yes, I believe most of us would. Would it mean stepping outside the comfort zone? Absolutely, but who would be willing to do that? Who takes the first plunge?

I enjoy growing my own fruits and vegetables and seeing that labor and time pay off. The rewards are satisfying. Each year I use different techniques and sometimes they pay off sometimes not. But you never stop learning and improving. Again would you be able to do whatever it takes? What is your limit? Each time you do something different or push yourself it’s an adventure.

For the record I’ve been skiing once in Colorado 25 years ago and went back to the condo early to fix myself a baked potato because it was too cold outside. I like the idea of snow and a house with a fireplace. Maybe in the future. I wonder if Amazon prime ships out there. I’m looking forward to fall for now and that’s it.

Scans at MD Anderson and the Summer of Healing

The second week of June I went to MD Anderson to have an MRI and CT scan . It was set up to be a very very long day. The day would start at 7am with blood work. With Houston traffic we needed to get a hotel for the night close to the MD Anderson complex. Remember when I said it was a complex, well driving around the streets of Houston at 6 am you’ll take whatever parking garage for the complex you can. Only until you’re instead do you realize that the actual offices you need are a mile and a half away walking through multiple buildings. There is a shuttle but of course that runs on limited hours. I was determined to grin and get through the long day. I had a brain MRI at 10:30, CT scan at 3:30 and would see my oncologist the next day to go over the results.

Dragging from appointment to appointment I looked for couches to lay down on and sleep the day away. The Brain MRI was on time and went well. The nurses seem to love poking the left elbow so all IVs and blood work go in there. “Grin and bear it. Just don’t look. It’ll be over soon.” The things you tell yourself to make it through each one. The CT machine broke down and was delayed. The result–having my last scan at 8:45 that night. Now you can’t eat or drink anything two hours before your scheduled appointment, so I didn’t eat/drink anything since 1:30. It was a hellish day. I wanted it to be over quickly and get out of there. By the time the scans were completed the shuttle service had stopped running and places to eat in the hospital were closed. To say it was a nightmare is a complete understatement. I later called patient support and insisted on appointments that were closer together. The day seemed endless and all I wanted to do was go home and sleep.

The next morning I had an appoint,met with the doctor at 1. This was quite an improvement over the 7 am, sit in 1.5 hours of Houston traffic. Still I didn’t want to go. I didn’t want to know the results. What would be the next step? What if this didn’t work?

The scans reveled that all tumors in both lungs were in measurable or gone!! I couldn’t believe it and asked a million questions. There were still three tumors in my brain. These they found to be stable, meaning they hadn’t grown in the three months since they had found them. Relatively good news, though I would ha preferred to have them gone completely. It took a while to sink in. What did this ,ran? Was this a second chance at life? Would the tumors return?

At MD Anderson the oncologist cited his own research study that I may not need more infusions of immunotherapy ever. We would just have to watch the lungs and brain tumors for progression. My Austin oncologist wanted to be a bit more traditional and continue with Opdivo infusions to control any growth over the next 18 months. The idea of no more treatments is appealing but if these can save my life the they’re worth it.

The plan for the summer was to Belarus fro. The side effects of the chemo infusions and get better. The drugs had also destroyed my thyroid and immune system. On Monday I have another appointment at MDA to check in. Scans won’t come for another month. Another month of waiting and hoping for the best. For now I’m gaining for energy and strength for whatever’s comes next.

Treatments and the Bucket List

Three rounds of Opdivo and Yervoy took it’s toll. There were multiple side effects (too many to list but it was bad) and most days I walked around like a zombie. The symptoms started to show themselves and I was exhausted everyday. The simplest tasks took so much energy. Your favorite foods have no taste and all you can do is sleep and hope it gets better. Couldn’t eat anything but saltines and Gatorade for a week. During the time I lost 24 lbs on the immunotherapy. The first round wasn’ bad, but it slowly kept building up in my system. For those who don’t know the chemo drugs are expensive. Without insurance it’s $25k per infusion treatment, big ouch. There’s also only a 60% chance that it’ll work.

One evening, one of my friends from middle/high school called and said screw it, let’s go to a Paris for a week. We had been through 6 years of French in school and had always talked about making the trip. Without any hesitation I said yes. Usually she’s half way around the world working on her PhD in Australia, but would be home for a family wedding. After some discussion and costs involved we decided on an Eastern Caribbean cruise. It was perfect timing. This trip would only be the two of us and allow time to spend together. I honestly didn’t know how further treatments would affect me and if this would be by last trip for a while. As much as I’d like to go scuba diving or hiking I didn’t have the energy for it. The cruise boat made sense so we could make our own schedule and not be rushed. Besides that why not start saying yes. If I had a few months, a few years, or more why not start saying yes and start living! It felt freeing and I promised myself to more time to enjoy the journey rather than race to the end.

I set up my calendar and before I knew it, it was here. A week off during the school year is something I’ve never done and not having a cell phone caused me some anxiety. Some folks said I shouldn’t have taken the trip and it was selfish. Honestly I needed a break and time to get away to prepare for whatever uncertainty came next.

After the cruise I felt refreshed and ready for the third round. Unfortunately the side effects got considerably worse after the third round and I was unable to get out of bed much less work. Throughout the whole process it’s felt like two steps forward and one step back. I stayed in bed for three weeks before my MD Anderson appointment to receive scans and see if the immunotherapy drugs had made an impact. There was nothing to do but wait.

The Journey

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.