Today is a big day for me. I’m FINALLY sharing my story in writing. In a few days it will be the 1 year anniversary of my surgery, and the most influential day of my life.
Some of you know my story a little, some of you know it a lot. I can see my story differently now that a year has passed. I can really see how it’s affected me, and how things have changed SO much.
After reading my story, you’ll see why the Design Life Project is so dear to me, and I hope that it will encourage you to NEVER take things for granted, and NEVER GIVE UP.
One day in September 2011 I was in my bathroom doing my makeup. All of a sudden I noticed one of my lymph nodes under my jaw (close to my ear) was swollen. I felt the other side, and it was totally normal. That alarmed me a little, because usually when you’re fighting an infection, both lymph nodes are swollen. Still, I wasn’t going to run to the doctor just for that. A week or so later, it was still there. I told my husband, “Hey, my lymph node on my right side is swollen.”
Now if you know my husband Erik, you KNOW he’s a crazy hypochondriac (Love you baby!). So I really hesitated in telling him, but I needed to ask someone. He started immediately freaking out and demanding I go to the doctor. I acquiesced and said I’d make an appointment to see my Primary Care doctor. Erik insisted I get in RIGHT away, so I did.
Every time I go to the doctor thinking there’s something really wrong with me, there never is, so I wasn’t surprised when the doctor said it was nothing. The doctor felt the lump, and and was pretty nonchalant about it. “It is probably just your body fighting some kind of infection,” the doctor shrugged. “Give it a few weeks, and if it’s still there, I’ll refer you to an ENT (ear, nose and throat specialist).
Well that did NOT go over well with my husband. He was NOT happy and he demanded I get the appointment with the ENT right away – no more waiting. So I contacted my primary care and got an appointment to see an ENT.
The ENT appointment was BAD. If you’re squeamish about needles, just skip over this paragraph. I was NOT prepared for what was going to happen. The ENT first stuck a camera through my nasal passage (up my nose) all the way to my throat. PROBABLY one of the most painful things ever.
I remember my baby daughter who was 8 months at the time, sitting in her baby carrier, watching the whole thing, totally oblivious, as my husband squeezed my hand tight and tears fell down my cheeks.
The ENT said he didn’t see anything. He then told us he was going to do a fine-needle aspiration (FNA). He injected the mass with some numbing medication, then started the biopsy. The needle they use for this procedure is HUGE and it’s hollow. They are basically taking “cores” of the mass. So he proceeded to dig into the mass over and over, removing samples. Although I was numbed, this STILL HURT badly.
The ENT then ordered me to get a CT scan and an MRA (like an MRI but more detailed), and told me he’d call me when we got the results. I lagged on getting the scans done, as I figured it would be a waste of money/time to do the scans, if the FNA came back negative. The ENT called and he said the FNA was inconclusive (meaning they couldn’t tell if it was cancerous or not). He scheduled an open biopsy surgery to remove more of the tissue. He asked if I’d gotten the scans done, and I told him I hadn’t, so he scheduled it a couple days before the surgery.
He ordered a rush on the results of the scans, and called me back the day before the surgery, saying he canceled it. He diagnosed me with a Carotid Body Tumor (CBT), and said he was referring me to a vascular surgeon who specialized in these things, but beyond that he did not explain anything to me about what the diagnosis meant.
So in comes Google! I googled Carotid Body Tumor. Basically it’s a tumor that grows in the “carotid body” – the area between where your carotid artery splits (it’s like a Y). The type of tumor is called a paraganglioma. I also read that it was EXTREMELY rare. I really couldn’t get a ton of information on it. That’s about all I knew before going to see the vascular surgeon.
The vascular surgeon appointment was totally surreal. The other shoe finally dropped, when he explained exactly what I had, what it meant, and the treatment options.
The doctor told us, “I don’t want to sugar-coat this. The tumor you have is very serious. It is three-quarters of the way wrapped around your carotid arteries. We won’t know if it’s cancerous or not until it’s removed.”
“The FNA was extremely dangerous to do with this type of vascular (full of vessels) tumor, because it could have caused internal bleeding. It is a slow-growing tumor, so you don’t have to get it removed immediately, but it is only going to grow, and it’s very large now.” I remember hearing his words like I was watching a movie. I was very removed from the situation.
He continued, “The surgery to remove this tumor is difficult, requires a lot of skill, and is very dangerous. Since this tumor is so very rare, not a lot of people have worked on them. I’ve done a lot of them compared to most people in this area (Southern California) – I’ve performs 5 of these surgeries in my 20 year practice. I have to be honest with you, and tell you, 4 of the surgeries were successful, but one of the surgeries, the woman suffered a massive stroke.”
“You see, the danger in this surgery is that the tumor grows on the carotid arteries, and it is very difficult to differentiate where the artery ends and where the tumor begins. Your carotid artery supplies blood to the brain. If the artery accidentally gets cut in the process, it has to be clamped to be repaired, and while it’s being repaired, it’s not supplying blood to the brain – which causes a stroke.”
At this point, I was pretty removed from reality. I had the oddest response. I remember SMILING and feeling like I needed to hold in my laugh. Almost like – “Oh OKAY yeah sure. I have a crazy tumor and have to undergo a surgery that could kill me or cause permanent brain damage. RIIIIGHT.”
Erik didn’t find it so funny. He was pale and he was shaking. I didn’t know what to say to him, or how to make it any easier.
The doctor continued by explaining all of the other possible side effects that were more likely – like me having to eat from a feeding tube the rest of my life. The neck and carotid artery are surrounded by very sensitive nerves, that control a lot of different things. There is a main nerve there that controls your mouth, throat and swallowing. If during the process they injure the nerve or have to remove part of it to remove the tumor, I would lose control of my ability to swallow on my own.
My tumor was also on the right side, which meant it controlled the RIGHT side of my brain. I need my RIGHT brain. I use it. A LOT. It was quite literally my creativity at stake.
The doctor finished up by telling us he would give us some time to think about what we wanted to do. He recommended waiting until after the holidays. Of course. Not a fun Christmas present.
This was the beginning of the darkest period of my life. I had to face this surgery eventually. It was like this cloud entered my life and made it’s home above my heart. All I could see was dark skies and rainy days. It was very hard to feel joy during this time.
The worst part of it all was that I was now a mother, to an amazing little baby girl. This changed EVERYTHING for me. I could not imagine Aven having to grow up without a mom – or worse – with a mom who was mentally disabled. Honestly there were a LOT of “ifs” that could happen with this surgery, and they loomed over me like nothing I have ever felt. I played out this scene in my mind a million times:
“My mother died.”
“Oh, I’m so sorry.”
“Oh, it’s okay, she died when I was young, I didn’t KNOW HER.”
It devastated me to imagine she might never know me. She’d never know the sleepless nights, the love and care I had for her. She would never know the sound of my voice or the touch of my skin. She would NEVER know.
I also played out the scene if I’d suffered brain damage. I imagined her having to treat her mom like a child, and never knowing how I used to be. I imagined people telling her stories about me, and her wishing she could have seen me like that.
It was terrible. My mind was a minefield with horrible thoughts. I’d break down and cry in the middle of the day. I’d scream to God and tell him that I didn’t understand why this was happening to me. I wondered why God would let this happen. I wondered if my time on Earth was done. I wondered why I was even here. I pictured my family, my husband, living the rest of their lives, either without me, or having to take care of me.
I imagined the moment BEFORE being put to sleep, wondering if it would be my last moment. I wondered if I suffered brain damage, if I would “know” it. Would I understand that I was disabled? Even worse, would I understand and not be able to communicate it?
Erik was very strong through these days, until one night. He broke down and started sobbing. My husband NEVER cries. This was probably only the 3rd time I’d ever seen it, and this one was the worst. He cried out,
“God, you can take ANYTHING, but you CAN’T take my WIFE.”
It killed me inside.
I remember being so upset at people around me taking things for granted. People would complain about the stupidest things. Every time I heard someone complaining about something dumb – like TRAFFIC – on Facebook, I wanted to scream at them – “WELL AT LEAST YOU DON’T HAVE A TUMOR!!” I was upset that they got the LUXURY of worrying about traffic. I was possibly facing my last days on Earth. I was facing possibly leaving my husband a widow, and my daughter motherless.
I was supposed to have the surgery in April, and I just couldn’t confirm a date with them. The whole situation just DIDN’T FEEL RIGHT. Something was missing and I just didn’t know why. I felt SO ALONE and SO afraid. The tumor is so rare, that I still couldn’t find much information on survivors. I couldn’t find anyone who had BEEN through it. I didn’t fit in with people battling cancer, and I couldn’t talk to my family or friends, because they just couldn’t understand.
I decided to search, search and search some more. One night on my iPad, I found a forum with people who had been diagnosed with a CBT. It hadn’t been updated after the person had the surgery. But I posted anyway. I posted about my diagnosis. I then got a private message from a member, who told me they had a private Facebook group! I immediately connected with a woman named Valerie.
I remember telling her she was like an angel. She told me her story and it was very similar to mine. She’d had the tumor removed and she was fine!
She told me about the National Institute of Health (NIH) in Washington, D.C. She told me they had a protocol (basically like a clinical trial) that studies these rare types of tumors, and that they operate on them often. She said all I had to do was get accepted into the program.
At this moment, it was like the cloud above my heart, suddenly floated away. The sun shone on my heart and I felt a million pounds lifted from my shoulders. It was the answer to my prayers, and I felt a peace come over me instantly. I felt God in that moment, I was truly wrapped in his warm embrace.
I knew this was the answer. Even though I hadn’t even applied or wasn’t even accepted, I knew. I immediately told Erik and he had the same reaction as me (Hallelujah!). I remember not worrying about how much it would cost, I knew God would provide. I later asked Valerie about the cost. She said, “Oh gosh, I forgot to mention, it’s all paid for! It’s for governmental research.” My miracle really had arrived. I applied, sent them my scans, and got invite to fly out to D.C. to get the testing done.
The Facebook group was solace for me.
Finally, people who understood. We were united in our rareness.
It was also difficult, as some of the members would pass away. They would change their profile pictures to an in-memory candle when someone from the group would pass away. There was one that affected me more deeply than the others. She was 33 years old. I stared at her posts pre-surgery, I heard her voice. And now she was gone.
In May of 2012 my dad and I flew out to D.C. to NIH. I underwent a week’s worth of testing. I was a literal lab rat. They sampled just about every liquid in my body, and did numerous body scans, complete with nuclear injections. I was pretty much glowing in the dark after that week.
A few weeks later, they scheduled my surgery for the end of August. The next three months were extremely tough. I was still very afraid.
I decided in order to be strong, I had to make peace with the fact that I may not make it through surgery. I had to lean on God’s understanding – that if it was His will, it was part of His plan. I decided if I was ready to die, I could face the surgery knowing I had done all that I could do.
I spent the next three months preparing for my own death.
I created a will, and a living will – which is basically stating your wishes should you become incapacitated – a very REAL threat in my case. I gave the orders of what to do should I become a vegetable or unable to speak my wishes. I made sure my life insurance was current. I wrote down all my bank account information.
I prepared my business. I got all my clients projects in order. I was going to be totally responsible, and not leave anything to Erik to have to deal with. I prepared my assistant with all the info she would need, and gave my mother-in-law access to running the business financials if she needed to. I wrote letters to my loved ones.
I hired a professional photographer to take family photos of us in our home, and a professional videographer to help me make a video for my daughter.
I basically made the video, to tell my daughter GOODBYE.
I told my daughter how much I had LOVED her.
During this time I read an AMAZING book called One Month to Live: Thirty Days to a No-Regrets Life
by Kerry Shook. In it, he explores what we would do if we only had 30 days left to live. He explores the idea of legacy, and the world and the people you’re leaving behind. He talks about what people would have to say about you, and how you lived.
Did I live the life I was supposed to? Did I use the gifts God had given me?
When we are gone, all that matters is how we affected others.
Had I really made a difference?
When it was all said and done, when I met God would he say, “Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things.” Matthew 25:23
I started to switch my thinking from “what if I don’t survive it” to “what if I DO survive it?” I started to think about how this fit into God’s plan. If I survived, what was His reason for keeping me here? If I survived, it meant I had work left to do. I decided if I did survive, that my life would have to change.
So the day finally came to leave for the east coast. My husband and I decided to spend the first 5 days of our trip, having fun. We went to NYC and stayed in Times Square. We lived it up, and had a wonderful time. We then took a train from New York to Washington, D.C., and a cab to NIH, which is in Bethesda, Maryland.
I ended up catching a cold in NYC, and it delayed my surgery. I was inpatient the whole week, so I was in the hospital and had to sleep apart from Erik. They have testing all week and the surgeries on Friday. I was still very sick by Thursday, so they canceled the surgery. I was so frustrated, I just wanted to get on the other side of the surgery. We had to cancel our return flight. Being sick in the hospital is a big deal, I was on quarantine from the other patients and had to wear masks and gloves. A few days later, they finally cleared me to have surgery. The night before my surgery, I spent a lot of time alone with God. I gave it to Him, I knew I was in His hands and I felt peace.
That night, I read my Facebook, and there was such an outpouring of prayers for me. My friends had posted on their pages to pray for me and my surgery. It meant the world to me, and I knew if this life was over, that I was loved.
The next morning I got up bright and early, and showered. Erik came to be with me. We waited. And waited. And waited. 3 hours after they were supposed to get me, they finally showed up with the gurney. The gurney trip to the OR was long. My heart pounded. When I got to the hallway outside the OR, the anesthesiologist met me. This was the time when I was supposed to get the “triple cocktail” as they called it. It was basically a mix of medications to relax you before entering the OR. The anesthesiologist informed me because we were running so late, that we would have to skip it, and that now it was time to say goodbye to my husband.
I wish I could say that I was strong in that moment. But I wasn’t. I broke down into tears and started sobbing uncontrollably. My husband kissed me and told me he loved me.
One of my doctors/surgeons touched my foot and said, “Catherine, it will be okay. We will take good care of you.”
And it meant the world to me and I was able to stop crying (Thank you Dr. Patel).
I went into the OR. It was a HUGE room where the left side of the room was all glass – an observation area, and there were a few people sitting there, observing from another room. I assume they were students (NIH has a renowned program). I was SO scared. I remember every second like it was yesterday. The sounds of the room, the machines, the tools. There were probably about 10 people in the room, all busy doing things to prepare.
They were trying to get an IV set up in my hand, and the anesthesiologist and nurse started arguing about placement. The anesthesiologist told the nurse, “Let’s talk about this in a minute,” meaning let’s talk about this AFTER the patient is asleep. They tried to give me oxygen through my nose, but I was all stuffed up from the cold that I couldn’t breathe right. They gave me a mask instead.
All I could do was stare at the ceiling, counting down the minutes until this was over. Minutes turned to hours.
I prayed, “God just get me through these next few seconds. I just want to get through these next few seconds, so that I can finally hand it all over to you.”
The anesthesiologist told me, “Alrightie, let’s have you take a little nap!” And I was out.
I woke up when I was being rolled into recovery. The next few minutes were a ton of TMI, so I’ll spare you those details. Basically I had a rough time coming out of anesthesia. The nurse asked if I wanted my husband, and I said yes.
My husband had a huge smile on his face and kept saying, “You did it baby! You made it!!”
I immediately asked him to get on my Facebook on my phone, and let everyone know I was okay. First things first, right?
The surgery was a success. They removed all of the tumor. I thought the coast was clear. I looked at myself in a mirror, and I realized something was wrong. The right side of my face was mostly paralyzed. I couldn’t make a full smile, and my eyelid was droopy on that side.
Later on, the head surgeon came in to check on me. He explained to me how bad my tumor was and how difficult it was to remove. They almost had to dislocate my jaw to get all of it. It had grown all the way up to the base of my skull. He said there may have been some nerves damaged because of all the jostling, but that nothing was severed. He told me it was called Horner’s syndrome. It’s where there is damage to the sympathetic nerve chain, and causes the drooping eyelid. He said it was most likely temporary. I was lucky to be alive, so I didn’t really let it bother me much.
We flew home a few days later. I was still in a lot of pain, but it was my husband’s 32 birthday, so we had a lot of family in town. What an awesome birthday present huh?
I had a new lease on life. I loved more, complained less, and pushed my art to new heights. I filled my days and my life with things that mattered. I finally realized how much of a BLESSING this whole ordeal was to me. I had survived and I was here for a reason. AMEN, AMEN, AMEN.
I finally got back the pathology report, and it said something VERY unexpected. It said the tumor was a Schwannoma. NOT a paraganglioma like everyone thought. A schwannoma? What the heck is that? Instead of a vascular tumor that grows on your arteries, it’s a tumor that is full of nerve cells, and grows on the nerves. This explained my nerve damage.
So back to Google I go. I start searching Cervical Sympathetic Chain Schwannoma. The more I research, I find out that this tumor is EVEN rarer than the first!
To this day, I haven’t met another person who has had this. There are only about 60 documented cases of a Cervical Sympathetic Chain Schwannoma in the ENGLISH LANGUAGE. Which would make it about ONE in a MILLION people get this.
So… was it cancerous?
I got ahold of one of my doctors at NIH (I had about 5 of them) and she finally answered my question on if it was cancerous or not – “We don’t know.” She explained that basically these tumors are still quite a mystery. They are basically cancer – but they don’t say they are cancerOUS until they metastasize – spread. So she explained that if it spreads, it’s cancerous, and if it doesn’t, it was benign. I was also tested for a genetic mutation that they think can cause these tumors. I was negative for the gene mutation, which was a big relief, because it could have been passed on to my daughter.
So now, on the one year anniversary of my surgery, I’m tumor-free. The nerve damage has mostly healed. I have a few issues with my vocals, but nothing big.
Surgeons removed a tumor from my neck, but God performed surgery on my heart. He healed me. He healed more than just my body. He healed my blindness and apathy.
God showed me what is important, and that’s OTHERS. I want to make a difference in others, and I want to help people. I want to serve His people.
I want to SHARE this story to all who will listen.
This is why the Design Life Project means so much to me. I want to encourage you to live a life you LOVE. I want to encourage you to be THERE for your family. To do your ABSOLUTE best at what you do. To CARE for and BLESS one another. To LOVE with everything you’ve got, and to NEVER take it for granted.
Thank you for blessing me by reading my story. Now make the rest of today COUNT.
P.S. I want to send some long overdue thanks to some people who were there with me through this journey. I could not have done it without you, and I will forever be grateful.
To my friends, to the Betas, for always listening and praying for me.
To my friend Valerie, and the rest of the Pheo/Para troopers – for being there. Rest in peace to those we’ve lost.
To my dear friend Lupita, for giving me constant hope, love and prayers to get me through this time.
To my best friend Jamie, who is my sister in Christ and who was a constant foundation.
To my Mother-in-Law who was patient and kind, and listened to me cry.
To my Mom who is MY ROCK and got me through and took care of my daughter when I couldn’t.
To my Dad, for traveling with me and getting through the impossible task of having to stand by and watch HIS little girl go through this.
To my daughter Aven, you are the REASON I had to LIVE. I love you with ALL of my heart.
To my husband Erik, for being my partner through it all.
To Doctor Patel, Doctor Kebebew, Doctor Yudiskya, Nurse Casey, Nurse Karen – To all of the NIH crew, for treating me kindly, making it possible and healing me.
To the United States Government and all us Tax-paying citizens – for paying for it.
AND MOST OF ALL…
To our one and only Savior Jesus Christ – the Way, the Truth, and the Life – for healing me – INSIDE and OUT, and for loving me anyway.
