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
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.
Got me all teary! What a wonderful story of strength and faith. So glad you shared it.
Thank YOU. You were such a big part of my journey and making that video for me! Love you!!
Thank you beyond words for sharing your story, you are one strong woman! I could never imagine having to go through something like that, especially with a daughter and having the thoughts of ‘what if…?’. I tend to get lost in my own work and often have to take a step back to realize what is most important in my life..or who is most important in my life. Moments like these really put everything into perspective and I thank you for that. I am so happy to hear that you are getting better and out of that experience you started this great project. You are truly an inspiration, thank you again for sharing, and stay strong!
Angela, thank you!! It’s a tough story to tell but my goal is that others can learn from it! I knew if I survived, that I would have a new responsibility to tell others. I am so glad to hear it has made you think. Xo!
I can’t tell you how your words have come at such the right time. You have been blessed and are blessing others. Thank you!
That warms my heart! Thank you Tracy. I’m so glad my story could bless you today. Xo!
Cathy!! Oh my goodness…I had no idea that you were going through this and it must have been around the same time you were designing my site. You are an amazing inspiration and I am so touched by your story. Thank you so much for sharing!
Most of my clients didn’t know the whole deal. I didn’t want to worry them. I had said I was going on medical leave, but not how big of a deal it was. I wanted to stay positive. You always were such a sweetie and a joy to work with! Love you!!
Thank you for sharing your story, Cathy and getting me all teary eyed first thing this morning ;)! Love you!
Thanks Leigh! I’m glad to hear my story can make an impact! Love you lady!! Xo!
Absolutely in tears. Love to you, my friend.
Love you Cassiopeia! Thank you for being such a dear friend all these years! xo!
I was just getting to know you when this was all happening, so I only knew bits and pieces of what you were going through at the time. I’m so sorry I didn’t understand fully how terrifying and difficult the entire experience was! I’m so grateful that you decided to write this. It’s so powerful and moving. The creative world is the luckiest ever to get to have you adding such beauty to it on a daily basis! Plus, I’m lucky that I get to be a part of it too in some small way! 🙂
You were a HUGE part Kyleen! You were prepared to take the reigns! I’ll love you forever for being there for me!! xo!
Love you Cathy, you are amazing. So amazing xo
Love you Rhi! YOU are amazing. Use those gifts girl! xo
Oh Cathy! God is SO good and you are loved by SO many! Thank you for sharing the full story – you are such a blessing and I feel so blessed to know you! xoxo
Now you finally know everything! Haha. You’ve always been a GREAT friend to me Moya. Thank you. GOD IS SO GOOD!!
God is our Jehovah Rapha, the One Who heals… Praising Him for taking care of you, healing your body and bringing you even closer to Him. Each of our lives is important to Him, each one of us! How can He love and care about each of us when there’s a billion + in the world to love? Because He is God. God = Love. I praise Him for choosing you to spread His news that each of our lives is precious and each is a journey that touches others and how important we are to each other. Life is hard, and He IS there, w/n and w/out, walking side by side…we can’t do it (life) alone and we’re not meant to. // Wonderful, thorough, well-written post, CA! (You da wo-man!) 😀
THE TRUTH! Love you momma!!
Cathy,
I have seen your work and seen how you have interacted in the PowerPlay group. But I had never heard this part of your story. It is incredibly inspiring. Thank you so much for sharing this. A reminder that I really needed and I am glad to know more about you too. Every day is such a blessing and thank you for reminding me with your story.
Thanks,
Angela
Thank YOU Angela! It means so much to know that I could help remind people WHAT MATTERS. xo!!
Praise God! Love you Cathy! xo
Love you so much Amber! You gave me a wonderful opportunity to tell my story and it really gave me the strength to make this difference. xoxo!!
amazing. i had absolutely no idea …thank you for sharing your story!
I know, a lot of people didn’t know! I’m so glad I finally shared and that God can use my experience to encourage others. XO to you Nicole!!
You got me all teary! Thank you for sharing your story. You are one incredible person!
I can’t take the credit for the miracle, but I’m glad I can use the story for good! 🙂 Love you Linds!!
Wow Cathy… I had no idea, and I am so thankful you shared your story. This got me a teary-eyed. I am very inspired and proud to know you. When we were in school together, you were always that beautiful, super talented girl who was a step ahead of the class, and it’s been a joy to get to know the heart behind that talent through this project. So happy you are well! xoxo!
Aww Jen! That’s incredibly sweet. You were top of our class girl! Thank you for your kind words. It’s been fun to follow along with you all these years! xo!
Hey Cathy…Your mom was still working with me at MCC when you were diagnosed so I had the privilege of hearing the first-hand accounts of the ups and downs of your journey and partnering in prayer with her each step of the way. It is always amazing to see how God brings us to a place of beauty and clarity through our seasons of brokenness. Your story is a celebration of redemption… reclaiming the restored life you’ve been given to give it back in service to others. Thanks for sharing, Cathy!
Thank you Alita!! Thank you for being there for my mom and lifting us all up in prayer! You are a blessing!!
THANK YOU for sharing this, sweet Cathy. GOD IS SO GOOD! SO GOOD! All praise be to Him. Thank you, Jesus, for this woman and her testimony!!!!
Thank you Kelly! God is good, all the time. In our darkest moments and our brightest ones. XOXO!
Wow, what an amazing story. Thank you for sharing it. It’s so easy to go through life apathetically until you have a wake-up call. Sharing your story is brave and admirable, and it’s amazing the way God uses our stories when we step out in faith!
Thank you Katie!! It was an amazing thing to have to trust God with it ALL. He really is good all the time! xo!
Cathy, thank you so very much, for your story. I understand only partially,what you have been through. For those facing uncertainty, your story will no doubt be a great encouragement.
Thank you Martha! Thank you for sharing that with me! xo!
Thank you so much for sharing your story, C! It brought tears to my eyes. God is GREAT! You are truly amazing. Never forget that. 🙂
Love you Michelle! Thank you for being AWESOME. xo!
HI, I HAVE BEEN DIAGNOSED WITH GLOMUS JUGULARE,IT IS AS RARE TUMOR AS YOURS.. 1 TO 1 .5 MILLION CHANCES OF HAVING IT.. READING YOUR STORY IS LIKE IS MY STORY..WISHING I FIND THE RIGHT DOCTORS.. THANKS FOR SHARING..
Hi Luz! I would suggest trying to find a private group like I did with my Facebook group! They can connect you to the specialist in your area. Thank you for sharing and I will be praying hard for you Luz! xo!
Thank you SO much for sharing this! You are so brave to talk about it all. I’m so amazed by you. I know your strength from this will help others including myself! Love you friend!
LOVE you Aubri! You gave me the strength to finally write this post and to share it! Praying for you. xoxo!
Hi Cathy!
I don’t know you, but saw this post on the MTH facebook group and have heard so many wonderful things about you and your talent and just happened to click to read your story. Thank you so much for sharing your beautiful story! It is so inspiring, encouraging, and Hallelujah! God is SO good!!! 🙂 I feel so blessed and thankful just from reading your story and know that He has amazing plans for you and for all those who will be touched by you!
THANK YOU Robyn! Those are incredibly sweet words. I appreciate you saying that! God is good all the time! xo!
I choked up reading this several times. Wow. Just wow. You are amazing and so is our God. Thank you for sharing your story and spreading this powerful message!
Thank you Sara! I am so happy to hear it touched you in that way! God bless you!! xo!
Even though I just heard you tell this story in your own voice in person just a few weeks ago, I couldn’t help but read every word and got teary all over again. Thank you for sharing, as always. Your story will be a blessing to many!
Sending love to you!
xo
Jessica
Aww Jessica! That’s so sweet!! This was the full story and I really was able to try to get people inside my experience by writing it all out. LONGEST POST EVER! Haha. So happy to have met you and have you become a part of my life! xo!
Thank you for sharing your story Cathy! You are such an inspiration, and I really needed this reminder today! (wiping tears away as I type this!) xoxo
Aww! Thank you Katy!! Love you lady!! xo
May the Lord bless you and keep you strong. This is so touching and I am so ashamed of myself for complaining about little things that don’t mean a thing. I have an old friend that is going through this same thing right now. Please keep her in your prayers, her name is Sandy.. Thank you so much for your encouragement ……
No need to be ashamed, we all do it! The key is to recognize it and be different! God bless you and I will keep Sandy in my prayers!
What an inspiration you are Cathy not to mention a very strong person. Thank you for sharing your story and your faith in God. I was very touched. I wish you and your family a truly Blessed future. I also live in San Diego by the way My daughter is a scientist at Scripps Research and is involved in cancer research – I keep praying she will be the one to discover the cure!
Thank you Linda! You must be incredibly proud of your daughter!! Thank you so much for taking the time to write! Xo
Thank you so much for telling your story,and for helping us all,in a way to tell family and friends how serious this is,and what we are going through.I am having my biopsies this week and have several tumors in the thyroid.God bless you always,and continue to enjoy the life God has blessed you with. You are an amazing child of God,and may He continue to bless you,in years to come.Thank you again Cathy,words can’t express how thankful I am and for spreading what we go through.Love and blessings to you ,your husband,and daughter. With all my love,Sandy,from Michigan.
Thank you Sandy! I’m incredibly inspired that you found my story and that it encouraged you today. God is the Great Physician and He is good! I will keep you in my prayers! Much love!!
My goodness, Cathy. I had know idea of your story. Just about brought me to tears. What an amazing God we serve. Just puts everything into perspective. Thank you for sharing this. Comes at such a great time in my life to hear it. Blessings to you, your family and your career and how it will touch others in an eternal way.
Oh Leslie, what you just said got ME choked up. To touch others in an eternal way – really the story is God’s and I’m just the vessel. It could have happened to anyone. I’m glad it happened to me and I’m glad I can share the story of His amazing grace.
In tears. You are such an inspiration. <3
Thank you Nina! Love you!!
To my precious daughter. I’m so proud of you. You did such a wonderful job sharing your story. I know it took a lot of time and a lot of courage to put it out there. From the responses, it has blessed a lot of people. I praise God that he answered our prayers. I have never prayed so much for anything. I’m sure that goes for your mom and Erik and many others. He lifted the cloud from over all of us. Praise His Holy Name. Your message to not take things for granted is so important. I remember how grateful I was the he answered our pleading hearts and spared my little girl. After a year it is easy to forget about how grateful I am and to not take things for granted. Thank you for the reminder. I love you. Dad
Dad!! I love you so much. Thank you so much for reminding me again why you’re the best Dad a girl could ask for! Lovins!
Bless you, and thank you for being brave through this process and for sharing this story. It will help many others on their journey too~ xo
Thank you Jennifer! God bless you as well! xo
Wow… you must be the most amazing person! I’m completely in awe of your courage, your grace, your faith… and your ability to share it in such a beautifully written story. Thank you for sharing. Like so many others, this comes at a good time for me. God does some pretty cool stuff!
God bless & also, praying for Sandy in Michigan.
Honestly, it could have happened to anyone. It’s all God, you know? Thanks so much for your prayers for Sandy! Xo!!
Thank you, Cathy! I so appreciate you sharing your experience. I’ve just recently gotten through a series of medical hurdles this summer- and reading through the lenses of your eyes was so good for my heart today. So thank you, thank you for showing His handiwork and letting His master design for your life bring Himself glory. In Christ Alone, Laura
Praying for you and I’m so glad this message was helpful for you. Thank you for your sweet words! xo!!
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You are incredible, Cathy. Your story is amazing beyond any words I could find to say. It’s inspirational and full of strength and faith. I honestly don’t know what I would have done in your shoes. And we thought putting me through exploratory surgery at the age of 16 was bad because they didn’t know what was wrong with me (appendicitis). I am so, so happy for you, and for Erik, and for Aven that you were blessed with the right doctors to come through this surgery. And I’m so happy that your beautiful little girl will know you for the amazing person that you are. Lots of love and hugs! xoxoxo
Thank you Alexandra! So much love to you!! xo!
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What a story! And wonderful to read a good outcome. May I add to always insist on specialists. Primary doctors are good at what they do, but the best recognize their limitations and send their patients on to specialists when encountering something unusual. As someone diagnosed (years ago – those six doctors who told me I had less than a year were wrong) with Stage IV melanoma after deciding to get a second opinion, I would have died within a year had I not made an appointment with a specialist without my doctor’s reference. One last comment: the oncologist I chose was the one who said, “It looks bad, Naomi, but I’m not God.”
WOW Naomi! Thank you for sharing that. It’s so true! If my hubby wouldn’t have insisted on a specialist, who knows how long my primary care would have brushed it off. Praise God you got the help you needed!
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1. God is good! 2. Wow is the second thing that comes to my mind. 3. Cathy, you are a strong and special lady. You have a purpose here on earth. Bless you!
How incredibly sweet Tanza! Thank you!!!
Cathy, I can’t believe I haven’t read your story until now. You are so inspiring and strong. The world is blessed to have you in it.
Love you so much Linnea!! xo!
Cathy! This is such a beautiful story. What great perspective. I can see how this made you a changed woman. Thanks so much for sharing. Really really good.
Thanks Becky! It was so amazing to meet you! xoxo!
Dearest Cathy! I was about to do review a session of DLP when I came across this an early morning, before sunrise, pausing to reflect… (no letter could suffice, but in summary…)
What you’ve shared has marked my life profoundly (and many others, who will not have to endure the same in order to learn such a lesson). Thank you that your story will change the way I choose to live, on making it count. Thank you for the radical reminder from a place of great authority in your walk with God and victory in Him on earth. From the moment I visited your site, I knew you were a world-changer, but now knowing this piece of your journey makes DLP (and who you are / all you do) all the more incredible, powerful, beautiful, extraordinary and glorifying of Him.
It has been my honor and privilege to have met you in my lifetime. I treasure the story of how the Lord led me to your site one day, and since then networked me into a bunch of extraordinary individuals. That season was a turning point as well. 🙂
Every Blessing to you and your wonderful family and business. I praise God for y’all. Will be praying for you!
Wow that is very inspiring God bless you and I pray he keeps using you and to give you blessings
Here I sit, tears streaming down my face. There were quite a few moments that pushed these tears into my eyes but when I read about your husband, Erik, telling God he could take anything but his wife, hot tears fell, splashing on my keyboard.
I know beyond a shadow of a doubt that would be my husbands response.
I don’t remember how I found my way here but I was sitting here, feeling lost, directionless, and pondering the DLP workshop/e-course when I decided to read your story. How incredibly grateful I am that you shared this!
I know what’s like to hold the hand of the one you love when there is a scary tumor involved and know what it’s like to be scared that they might not wake up or that if they do, they might not be the same. Your story touched my heart deeply tonight. I appreciate your honesty and incredible bravery in sharing your story.
Thank you.
Our God is SO GOOD! I rejoice with you in His mighty glory and power and divine grace.
WOW. Thank you SO very much for this Jennifer! Messages like this are a GREAT reminder of how glad I am that I share my story to others. THANK YOU THANK YOU!! xo!
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Hi Cathy! I “met” you through the Emily Ley webinar recently and I was just browsing through your site and reading some of your amazing blog posts. I stumbled across this one and I just wanted to let you know how much it inspired me to be brave and not hold back in life! What a blessing you are and I am SO glad that God is so good and kept you safe! Much love to you!!
Thank you so much Ashley!! I’m glad my story could inspire you! Yay!!
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Thank you so much cathy for your story.i am scheduled for a neck paraganglioma surgery this october 13 2014 and your story inspired me a lot and has given me hope and inspiration. Please say a little prayer for me..thank you so much..God bless you and your family.
Cathy! I can’t believe I haven’t read this until now. I hadn’t heard the whole thing, and it all sounds so crazy. Thank you for allowing me to be a part of your story as well. I definitely teared up a bit there, you all went through so much. But I am also so glad you are doing well — nay, doing AMAZINGLY, and using the gift of life that you have and see now, and using it fully. It’s so awesome. And I’m so thrilled for you! I hope we can catch up soon, we are actually going to be moving back up to Northern California in January, so maybe we can connect before we leave? Miss you! xo
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Hello April 2011 I had Right side carotid artery tumor in branch of neck ….and St the same time they found out bout this tumor they found out about a pontine brain tumor witch is not active at the time….but since 2011 I have had nothing but tumors pop up now I have cerebral peduncle lesion and mid focal lesion and mig that kill me everyday. …I’ve had my intestine half way removed and my bladder well had many surgery plus I have Interstitial cystitis….and fibromyalgia and worked up for ms for a year witch they said I don’t have my question to you is how are you after your surgery
Thank you. I have. A globus vagal tumour /paraganglioma and am meeting to surgeons in two days to be told when the surgery is. I am already hoarse and having difficulty swallowing. I felt your anxiety and you are right are these tumours are so rare it’s very hard to find someone to talk to. Prayer is my friend . It’s in Gods hands
Thank you and Bless You I hope u r doing really well …I believe I have narrowed what I have been going on and have set apt with head and neck surgeon my support comes from other zebras unfortunately those near me are quite cruel..but I have and will look to God and all those who are kind I have survived this far and will continue with the same family of guardian Angels as I go foreward I have courage & faith and your story and journey helps support this hope. bst2u
Cathy, what a wonderful testimony for our God. I am happy to have found your post here. It will be one year on April 17th, for my tumor removal. I still have a little left as it was wrapped around my carotid artery. I became blind in my right eye the year previous which tipped my doctor off to do an MRI which showed the reason, my artery was being strangled and the blood flow caused the blindness. I now have my sight back, not 100 percent but so much better. My surgery took 14 hours. I am blessed to have made it, and still praise God for all He has done. May God continue to bless you and your family.
Sincerely,
Robert Sloop
Onsted, Michigan
WOW! What an amazing story. In putting my story out there I found so many others! Prayers for continued recovery!
I have the CBT symptoms, am a Nurse. Thanks for sharing your experience, this gives me hope!!
Thank you for sharing your story. I was just diagnosed with a CBT on Monday. I have a biopsy and ultrasound on it tomorrow. It’s hard to find any information about this. Thank you for sharing. I am married with two young boys. I would be lying if I said I wasn’t scared. But I know that God is with me and I trust Him.
Thanks for your story! So great to see and hear others experience. I had cbt removed 6 years ago and still have a half smile a partial paralyzed vocal. Just this may 2016 had my right side removed causing so much more pain in jaw and ear though the healing process but Our God is an awesome God and with this one I don’t believe Amy damage was done! I did want to let you know my little brother also had these tumors both sides as well as my aunts were also attached to vocals and great grandmother. for as rare as they are 4 people in the family and it’s rare to have left and right which we all had. I hope I heal up really soon cause I have two boys that need me to live life with them which I selfishly have sobbed and been scared of for the last 6 years thank you