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Last week I again made my way down to MDA in Houston. I had received amazing news in April that my treated brain tumor had decreased by 1/3rd since December. This was so much cause for celebration already. In the weeks leading up to the trip scanxiety set in. That’s the term that many cancer patients use for that time of so much uncertainty. I had hoped that the scans would yield stable (unchanging) results and maybe I’d be moved from my 4 month frequency to 6 months. Instead, I WAS DECLARED CANCER FREE!!!!!!!!

I started this unexpected journey in November 2015 at 33 years old with stage 2B Melanoma. Surgery was ordered immediately and I was told that it was gone. A year and a half later, I remember my heart (and stomach) dropping as I sat in the doctor’s office hearing that at 35 I needed to get my affairs in order.

I think about that moment often and glance towards that office as I drive by once a week. It couldn’t have been easy for the oncologist to deliver that news. They knew the odds of stage 4 was 15-20% at best for 5 year survival. But they also did not know me. They did not know how incredibly resilient and let’s face it stubborn I am. I made up my mind to go to MDA right after I got back from a conference. On my way to the conference, I was still processing what the first oncologist told me and hoping that MDA would have another answer. I sat next to an older lady on the Southwest flight to California. We started talking and I told her what I was trying to process. At the end of the flight we exchanged phone numbers and she told me that she’s going to check on me. Five years later Linda still sends me a text every 6 months. I’m reminded of this simple kindness of listening and checking in with someone even if there’s nothing more that can be done but listen.

Flying into Houston for my initial appointment at MDA was overwhelming but also comforting. There was a million appointments and different doctors, but they all had one focus and that was to help me heal. As a side note, never once did a doctor at MDA lose hope or tell me to “get my affairs in order” even when I had doubts. This was an essential lesson in learning how to advocate for myself and doing what ever it takes to survive.

At the time of my first diagnosis, I had two young kids. One was 6, the other 3 years old. This journey has impacted both boys in very different ways. My oldest was in first grade when it began, he’s now a freshman in high school. He remembers a time before cancer when his mother had more energy and was not in bed most of the day. He remembers going to the same high school, which he would attend 8 years later, for an “Adopt-a-Kid” Christmas party because his school counselor wanted him to have some joy at a very difficult time. He also remembers a wonderful non-profit organization in Austin called Wonders and Worries that held free classes grouped by age to help kids cope and process everything that comes with having a family member with cancer. My youngest, who’s now in middle school, only remembers me being sick. He doesn’t remember a mother who didn’t have cancer and accepted it. He also had professional assistance and some incredible teachers. During this time I also started writing letters to my boys with some of my memories. Those were some of the hardest letters to write. It’s the type of task that you never want to do, but know it’s important so do it anyway. Those letters are still tucked away, but thankfully unfinished. Both boys processed the journey and sheer trauma in very different ways. No other word for it. It’s meant so much uncertainty and pain.

After the tremendous news this week, I rushed home where the family sat on the couch waiting to hear the news. My oldest started crying and wrapped his arms around me hugging me tightly. He was reassured that I was going to be there to see the milestones ahead in his life. I was going to be there at his high school graduation, college, and so much more. My youngest also hugged me but had a look of hesitation and let’s see in his eyes. Yep buddy, I’m going to be there for your milestones too.

During my visit to MDA last week I wore the Melanoma Awareness shirt that was part battle armor and part moral support. After my last appointment of the day I waited by the elevator when an older man with a cancer support shirt on himself read my shirt and asked me if I believe in a cure. I said yes and I had survived. He smiled and said “me too”.

Could it have turned out differently? Certainly. I know that I was younger when diagnosed (but so had others), and received the latest immunotherapy (but so had others). And had access to the best cancer center in the world(but so had others). In short I don’t know why and maybe I’m not meant to know. What I can be is incredibly thankful to have the gift of more time. There are no guarantees in this cancer journey. For the better and worse, this journey has changed me. So we turn the page to the next chapter and live well.

White Water Kayaking and Scans

I had the incredible opportunity to join a group of 12 other cancer survivors on an adventure in July. This program was through, First Descents, a non-profit aimed at giving young adults who experienced cancer opportunities to push themselves outside of their comfort zone. It was a 5 day trip that will never be forgotten. The adventure included learning how to kayak followed by class I, II, and II white water rapids on the Arkansas River in Colorado. The theme of the week was “challenge by choice”, you always had the option to partake in the adventure or find an alternative path. Although a bit out of my element I pushed myself each day and had an amazing time. What made this experience so incredible was that there was almost an instant bond between participants. We had all been through some form of cancer and treatment. We had all lived through hell and soon began sharing stories of our journey.

Right before learning how to go underwater

Water Polo games in kayaks and tutus of course

Navigating a few rapids with Giggles in front, April Fools in back

Conquering first rapid: April Fools and Giggles

Participants, program leaders, and river guides

After the adventure, came August which meant back to school for the kids and I and scans at the end of the month. Scanxiety is a real and common thing in the cancer world. It’s the worry and anxiety that shows up before scans and appointments. People handle it in different ways. I always wanted to go in knowing my different options, paths, and plans of action. You will have an option A, option B, option C, etc. Knowing that if the best news is not presented you still have a plan. Maybe this is my attempt at control but it works for me. Usually scanxiety starts a few weeks before the actual appointment. But this time was different. Maybe it was the Colorado trip that boosted my confidence and reminded me that I’m not alone.

So what were the results, drumroll…continue to stay clear-no evidence of disease, no evidence of cancer from the neck down. All the lung tumors are gone and have stayed away since immunotherapy. Immunotherapy had also cleared 2 out of 3 brain tumors. The remaining brain tumor was monitored closely for a few years. In March 2021 it was starting to grow a little more and we decided to essentially zap it with Gamma Knife radiation. Gamma knife is very successful, but of course has risks and side effects. The past 18 months has been monitoring the delayed reaction of the tumor and surrounding tissue. After 18 months, the swelling has started decreasing in size along with the tumor itself. This is amazing news and I’m extremely grateful. If I continue to be stable, (some people may laugh there), it’ll mean going for scans every 4 months to 6 months to 1 year checkups. That is the path to survivorship. It means dealing with the side effects for maybe forever, but that’s a choice that I’d make a million times again. So what’s next? More adventures of course!

December Scans

Most cancer patients have scanxiety. It’s the anxiety of knowing about an upcoming test or waiting what feels like an eternity for results. On day 1 I had bloodwork downtown at MD Anderson at 6:45 am. That’s the opposite side of Houston with lovely unpredictable traffic. Waking up way too early meant I was a zombie that couldn’t eat or drink anything for most of the day. Zombies need to eat. After bloodwork a lovely Barium concoction was made to order-I take mine mixed with Sprite. It’s a super sized drink that you have to hold your nose to take in 45 minutes. They don’t offer any mixers no matter how much you offer to bribe. Yes I have tried. Get drinking the super sized cup and don’t stop because you’re on the clock. After an hour or so is the actual CT scan that takes 10 minutes but there’s a million steps all asking you to verify your ID. Yes I know who I am. There’s also a wrist band just in case. After the CT scan came the MRI. You lie flat and your head is put in a helmet with foam all around to hold your head still. Then the mask is put on. You enter the tube knowing that there is no getting out. Being claustrophobic I have to put myself into deep relaxation and close my eyes each time I have this test. Sounds vibrate at different decimals. Each test lasts about 3-5 minutes and there’s usually 10 total-with and without contrast. After the tests all you want to do is to escape, to escape and go home to sleep. Day 1 was finally over and I could rest.

Twenty four hours later we were sitting in the packed waiting room for melanoma. Every one in that waiting room was fighting the same disease. It was completely packed with 40-50 people but you could hear a pin drop. Everyone was lost in their own thoughts and battle. As I looked around and tried to offer a smile of hope to a few that stared blankly anxiously awaiting for their name to be called. The majority of people were in their late 50s to 60s. I stuck out like a sore thumb being one of the youngest in the group.

You would think that after all this waiting they would come in and tell you the results, nope. A nurse comes in to review your medical history, yes I know I just got scans yesterday and no I haven’t fallen in the last month. Then a young doctor comes in an hour later to tell you the results. Today she was ecstatic to tell me that MY LUNGS WERE CLEAR OF ANY TUMORS AND THE BRAIN TUMOR HAD REMAINED THE SAME SIZE AND SHAPE!!! This means that either the tumor isn’t growing-great news or that it’s scar tissue that will always be there and won’t hurt anything-even better news. I’ll follow up again a few more times every 3 months. Finally the lead doctor comes in to tell the same news and answer any questions. They can’t say that I’m clean and in remission for at least a year. But for now this is a great victory. Everyday I’m getting stronger.

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.

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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