The Night Before the First Day of School: A Mom’s Story

Supplies dropped off, lunches made, first day clothes laid out, showers, and teeth brushed all checked. Tomorrow’s the big day for my kids, not me. Well maybe me too.

Will both boys (1st, 4th) know where to go? Know where to sit in the cafeteria? Will they have friends in their new classes? In a new environment with so many posters will they be able to concentrate at all? Will they be the nice or naughty list? Remember the movie Matilda where the boy had to eat the entire cake?

What will lunch be like? Will their lunches be cool enough to trade or am I a lame mom for going with the traditional sandwich instead of overpriced lunchables. (Once a week for emergencies only, I swear)!

What about the summer assignments, will those be mentioned on day 1? What mom really did make their kid read 1 hour a day and not watch video games? I was proud of the assignment homework completed and an attempt to keep up on summer reading. Will that be good enough? That’s the question will they be good enough as students and will I be good enough as a parent to the teacher? You know LEGO Minecraft is problem solving and creativity. 😉

A million worries flood into my brain just thinking about tomorrow and it’s mostly for them. I can only hope that each year is better than the last and they keep on growing.

Do my boys always have perfectly brushed hair and coordinated outfits? Nope. Sometimes it’s a struggle to get a shirt on, a victory even. I spray hairspray as they’re running out the door. You have to work with what you can and do your best. Do I get looks when I show up with a dozen store bought cupcakes, you bet-ya. If you were a good mother you would have baked them yourself and volunteered-why don’t you volunteer again, don’t you care? Part of it is that little gremlin that sits on the left shoulder nagging with negative self talk but part is society’s unrealistic expectations.

It’s not going to be a perfect year, and I’m sure I’m going to get several calls from the principal (please not on the first day like last year). Kids are going to have bad days just like their parents. The main message I need to consciously remind myself this year is to say that “they made a bad decision, that they’re not bad (or being bad)”. We’ll see how that one goes but I’m optimistic. The bookshelf of mindful books are sinking get in.

Does all this really matter or is it in our heads? Are we overthinking all this drama and making ourselves much more anxious than we really should be? How much of it is bad memories being transferred to out kids? Random thoughts.

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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.

“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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Reactions

Cancer is a journey that unfortunately most people go through alone. Your friends and family try but often they don’t know what to say or how to help. The usual “I’m sorry, and we’re here for you, whatever you need” are pretty typical lines. The thing is that people have their own lives with their own problems. They sometimes don’t know what to say or how to help.

I received a phone call about 10 minutes after making it home and started crying in my garden. I hadn’t even had the chance to tell my family what was going on. I shouldn’t have picked up that call but did and of course it was work. They wanted to talk work and how a training went, In tears I blurted out that I just found out I had cancer and would talk about the training tomorrow. That’s an extreme example of unloading on someone, but you never know what someone is going through. This person still avoids me months later and barely speaks to me. Maybe they’re afraid of saying the wrong thing.

In another moment, about a week later I was washing my hands in the restroom when a colleague came out to do the same. She asked the typical “how are you” expecting to get the automatic response we all give of “fine”. Instead I broke down and told her what I was going through. She was beyond encouraging and continues several months later to follow up with me. This person took the time to listen and more importantly have compassion.

It stinks but cancer is a journey where you find out who your true friends are, who just wants the gossip, and who’s ready to write you off as if you’re broken or already dead.

You look for those moments of peace and hope your true friends and family stick with you. We all fall down. Who do you have that helps you back up and how do you help yourself back up? Two questions that take time to answer.

In the messiness also comes the beauty and kindness of the humanity where coworkers and neighbors bring you meals, family and friends make quilts as a comfort during chemo treatments. Those moments of true generosity are unexpected but mean so much. So thank you to those friends and family for sticking with me on this journey through all the ups and downs.

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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.