Angelism: Nothing is ever really behind you… if something happened to you, and your experience was truly memorable (good or bad), it’s only a matter of time before that ingrained memory appears again.
As with any victim of trauma, once you face something bigger than you can wrap your head around, it takes over and becomes a part of you. This experience or circumstance doesn’t have to stop you, or consume your life, but it is a part of your story and a reason at times you will fall back a step or two. When fight-or-flight hits, no matter how many people tell you to move through it and forget about it; the visions, memories, emotion, and weight of the experience, can, does, and inevitably comes back. How you choose to manage it is what matters.
Many of you know I had brain surgery last year on 12/12/18. A year ago this month, I was very unsure of what the hell was going to become of my life. Although I was confident I would power through, the unknown was terrifying. It was a personal journey that I had to brave. Though I had support and love all around me, I was the one who was about to have a hole drilled in my head. I had to wake up every day knowing this shitty situation was all mine to manage. I am happy to report I am on the other side of a successful craniotomy and thus far have recovered well. As of now that large olive sized tumor invading space in my brain is no longer there. Now, I spend a lifetime praying it doesn’t return.
Fortunately, in the last six months or so, I have thought very little about what I went through. My surgery and condition comes up in conversation once in awhile and I move through the chatter quite quickly. I still feel the scar when I scratch my head, I see the wispy hairs of a variety of lengths growing back to remind me of the trauma to my skull, and occasionally I feel some weird sensations in my head; thankfully overall I feel good and I have moved on. Life resumed as usual for me, it simply did not stop moving forward because I had a traumatic experience. I’ve been doing well and I am pleased with the results.
Now, this is where my Angelism comes in: Nothing is ever really behind you… if something happened to you, and your experience was truly memorable (good or bad), it’s only a matter of time before that ingrained memory appears again. This quote could not be more true. I found myself yesterday in line at the grocery store, reviewing my Facebook (FB) memories, when BOOM! Publicly tears welled up in my eyes, tears I could not fight. There I stood, reading my social media post that I created the day before my surgery announcing to my family and friends my diagnosis and the procedure I was about to endure. In this post I asked them for prayers and well wishes. The wave of unstoppable emotions simply took over. I paid for my groceries and quickly went to my car where I was compelled to read through over 200 FB comments. It was beyond overwhelming. I was sad, happy, angry, scared, and super emotional, for no REAL reason. In this unexpected moment, all the feels came rushing back.
Hitting this one-year milestone post brain surgery has apparently triggered some PTSD that I could not escape. The last 12 months have been a challenge and they have taught me so much. My personal journey was one that took more strength than most people will ever realize. I have never been a weak person. I always hold my head high, I fight for what I want, I strive to win, and I never give up. I have managed all of this very well and am super proud of myself. I stayed strong and had to fake that strength many days. If I’ve learned one thing it is that vulnerability is one diagnosis away. A diagnosis that can make someone tough like me, feel scared and weak, on any day, of any year, at any stage in life.
These pictures have me wishing I could be that “no worry” kid again. Little Angel had no idea how strong she’d have to be as an adult. A hard day back then was falling off my skateboard or playing outside too long and getting a sunburn. I see my little face and am driven to stay strong because from day one I have always been determined!
MY BRAIN TUMOR DIAGNOSIS LESSONS:
- Never give up on yourself or your circumstance. You are always a work in progress and sometimes you have to do work that you did not sign up for. For no good reason, a terrible circumstance will choose you. Be ready to fight!
- Ask for help. People are willing to assist but often they do not know how to. Tell people what you need, how you would like them to show up for you, and the space they should give you. You will be surprised how willing to help friends and family are when they understand exactly what you want.
- Get organized. The best gift you can give yourself is to get your shit together. This is good advice for anything in life but it was particularly helpful pre-surgery to have organized my life for three weeks in the future so I just had to power through the healing process free of worry.
- Seek additional opinions. In my case I met with four well-known neurosurgeons in Los Angeles. I wanted to understand how they would approach my surgery and what the aftercare plan and expectations were. I learned a lot in this process and in the end I went with my gut. It was nice to have options.
- Say I love you. With any surgery, you simply never know. I’m always very affectionate but I found myself being even more lovey and grateful. Should any of those days have been my last, I wanted people to know just how appreciative I was for my life and them being a part of it.
- Come up for air. A scary diagnosis or traumatic event for that matter can really drown a person. The anxiety, fear, and nightmares that come uncontrollably require attention and management. I caught myself losing sleep, and having nightmares of my brain bleeding out during surgery. I’d lose my breath at the thought of an unsuccessful surgery and would get stomach pains thinking that I may not make it through this. The symptoms were real, but I fought! I hit the gym, I prayed, and set good intentions. I began to dream of a stronger, better me post surgery. It really helped!
- Be patient. This was probably my biggest challenge. I am a workaholic. I love to stay busy and when I am not busy I love to venture out, enjoy life, and party. The idea of resting and relaxing, while in pain and not being mobile for three weeks sounded awful. I literally prepped for this by writing myself a letter, reminding me how important it is to remain patient during my healing journey. I still read this letter at times to ground me.
- Cry and cry some more. Tears are therapeutic. Cry for your old self, cry for your new self, cry for the outpour of love you feel, cry for the inability to connect with someone who understands, cry for the unknown, cry because you are alone, cry because you survived, cry for the pain you see in those who worry for you, cry knowing that you may have conquered this day but possibly someone else was not as lucky, and cry because this is just one step of many in an unknown journey. There are so many reasons to cry, I learned you simply have to shed the tears and move along.
- Respect that others do not understand and neither do you. Every individual human on this planet has baggage and it is unique and specific to them. What keeps you up at night is not something anyone else will relate to, especially if they do not have a very similar situation to compare it to. I knew I would need support so I joined two online support groups where I could connect with people on a similar journey. This was the most helpful step I took. I also have a dear friend who had brain surgery two years before me. We are now bonded in a way others cannot relate to. But I highly suggest you accept the fact that people will not understand. They can’t possibly “get it” and to expect otherwise is unfair. Focus on healing you, because you cannot change others to see, feel, and understand that which is your personal journey.
- Accept that the only guarantee in life is death. I know this sounds morbid and maybe it is. Don’t get me wrong, I don’t want to die ever if I can help it, but I also only want to live if I am well. In this process I became OK with the idea that this could possibly be my time to go. I very proudly LIVE MY LIFE. I travel often, I eat the dessert, and order the extra shot with my beer. I soak in the sun, stay up late, celebrate every moment I can, and I’m not scared to take risks. I am transparent, what you see is what you get! I move with good intention, and I express love and appreciation all the time. I have no unfinished business. I feel whole, so therefore if my life needs to end tomorrow, I know I lived well. Somehow, this acceptance of my beautiful life, with no regrets, and no unfinished business, really gave me a sense of peace. The day of surgery, I got my anesthesia cocktail, closed my eyes, and drifted off to the unknown with complete confidence.
I’m positive there are lessons that I am forgetting but this is what comes to mind in my heightened emotional state. I thank you for reading if you made it this far. Here is a proud picture comparison. Image on left was me about 16 hours before surgery. I probably cried a dozen times that day trying to pump myself up to willingly check into a hospital and let a complete team of strangers drill into my head. To the right is my most recent work photo taken a few months ago. Thank goodness for professional photos giving me a beauty boost. All I can say at this stage is, “WOW what a difference a year makes! Whatever your journey, hang on… the hard days pass and in the end you’re better for it!”
Images below of my memorable day that I am so grateful to have behind me. My surgeon was amazing and he is known for cutting and shaving very little. With so much gratitude I give a shout out to Dr. Daniel Kelly, he was fantastic!
And well, because this is funny and we can all use a laugh…
Thank you so very much for these kind words. Many people have told me that my story/ article was helpful not just to them as the patient, but for those around them who struggle to understand. My story is written simple enough for the friends and family of a patient to relate more to what the brain tumor journey entails. I wish your daughter all the best, hugs to her on her journey. Feel free to share my story with your family and friends on social media… if it can help even one person then my medical condition and lessons along the way did not go to waste! Working to pay it forward. Take care!
Thank you for sharing your story. It was like I was reading about myself. I had meningioma. It was 3.44cm in size and the swelling around it was huge. I had surgery at UCLA this December 17th, so I’m under 3 weeks post op. I am having speech problems, which is to be expected. Whenever my brain gets over stimulated, I have seizures and I can’t talk or I talk gibberish. For the most part, I can talk, but it just that one time a day where I can’t talk and my right hand goes numb. So my surgeon put me back on steroids Thursday and I am feeling much better. I’ve been in the anti-seizure medication, but that didn’t do the trick, so now I’m on the vimpat and the decadron. Yesterday was the first day I didn’t have a seizure. So the decadron seems to be working. I have so many questions for you. How long were you on anti-seizure medication? How long were you on the steroid? Which Los Angeles doctor did you go to? Did you have any steppe here problems? Any answers would be appreciated.
Thank you for reading my article, glad it was relatable for you. I’m happy to hear you are on the other side of surgery. It is a journey for sure and mine went much better than expected so I got lucky. I was on steroids and anti-seizure medications for a week, I had my procedure at St. Johns in Santa Monica, and my doctor was Dr. Daniel Kelly. He is fantastic! I had to go on antibiotics about a month post surgery because my wound was oozing a bit. That was a mild set back at the time because I thought I was in the clear. Now a year later, I’m not on any meds and appear to have had a full recovery. I do feel more forgetful and I struggle to remember certain words; I also feel more lethargic than I did prior to surgery. Some say this is because I’m in my 40’s and I’m overworked from always trying to do so much. Currently I’m finishing up my website http://meningiomacompanion.com; I want to be a patient advocate/ direct support for people during this brain tumor journey. Although I will have to charge a minimal fee for appointments with me over the phone and via facetime/ skype, it’s my calling at this time to lend this support. Patients feel so very alone during this journey, I plan to be their cheerleader and hug when nobody else seems to understand. Thanks again for your feedback, if I can be of any help please let me know.
Thank you for sharing your story. It helps to know there are others out there feeling the same.
Thank you for reading. You are not alone!
Reading this encouragement is just what I needed. My surgery is scheduled for Feb 4th, 2020. Thanks for sharing your heart.
You are so welcome, I am glad you felt it was helpful. Best of luck to you. Please check back in post surgery and give me an update. XO
You did a beautiful job expressing your story and feelings. I am also just over a year out and can relate very well. Mine was a different type of tumor but the emotions are the same. I have often thought of writing about mine but have not found the time. I have had the opportunity to speak if you are interested you can watch it. http://www.bethoelkers.com
Be proud of yourself. I know how hard this last year had been for you. You are a rockstar!!!!
Thank you Beth for your kind words. I very often consider myself a ROCKSTAR, so funny that you mention that. I will check out your link, thanks for sharing!
Angel,
Thank you for posting this. I am so worried about my upcoming surgery and the life that may be after that I want to cancel it! I am afraid I will feel worse after recovery than I do now. I can deal with some minor headaches, but some of the stories I read, I’m sorry I did! I know not everyone has the same outcomes, but there are no guarantees. I think more people should post their good outcomes on the FB page. I think it is beneficial to all, as with anything in life there is good and bad outcomes, but with more positive examples, there is more hope. Wishing all of us continued good health and Happy Holidays!
Thank you for sharing. I agree, I needed positivity badly. I try to always post on FB motivational stuff and of course realistic points of view but with a power through vibe. I appreciate you reading this and I wish you luck on your surgery. Know that the worry pre-surgery was worse than post recovery. Hard to imagine making it to the other side when you are in count down freak out mode but have some faith, you will likely be just fine and totally surprised at how manageable it is. Medicine and surgery have come a really long way. Enjoy the holiday season and check back when you are on the other side.
Thank you for this post. You know what you are talking about. My wife was diagnosed with GBM4 in January. We are from the Netherlands.. Great recovery but now recurrence. Your tips and tricks are so good and so true.
Thank you for the compliment. It certainly is a journey!
Love your positivity !!! Infectious 🤜🤛
Hi there…..just read your post….so good! My husband, Willie Olivares (DJ’s Uncle) was recently diagnosed with prostate cancer. The specialist think he has probably had it for six or seven years. Out of 12 biopsies, 11 came back with cancer. There is one area in particular where the doctor is concerned that the cancer may have gotten to his bones. We have spent the last few weeks going for tests to see if he is even eligible for surgery. We go this Tuesday to hear the results and discuss what his options are. I’m scared….but hopeful. He has been amazing…he certainly does want to live….but realizes that he is almost 80 (in 6 months)…and we don’t live forever. I’m right in the middle of being in love with him…..I just can’t imagine a world without him, you know? I so appreciated your honesty. I’m so happy for you that you are living your best life!
Cyndi, I am so sorry to hear this. I adore your entire family. Hugs to Willie from me. I worked in a prostate cancer clinic at USC for over 8 years. If you need a second or third opinion, please look up Dr. David Agus. He and his team are at the top of the cancer field and they may be able to help. I literally witnessed miracles working there. Feel free to say that I referred you, Jillian and Wendy would know me for sure and could assist if you decide to look into it. Stay positive and I will be praying for you. Life circumstances choose us and it’s not always understandable and certainly doesn’t feel fair. 🙁
Thank you for this. I cried when I read it. I’m two and a half months post-crani and I had gamma knife just yesterday to kill the tumor that was inoperable. It’s been a ride, as you know and it’s not over. It will never be over. I wish my husband and family would read this. It would help them understand why I cry over nothing or am manically busy doing things. I go back to work on Monday. I will have to wear an eye patch do to double vision and it’s okay. I’m alive, I feel good, I’m happy, and I’m extremely thankful.
Thank you for reading and what a great attitude. I totally agree this blog could definitely help friends and family have a clearer understanding what thoughts are in our heads. But it’s our journey to walk, people like you can me can at the very least relate and connect in ways others can’t. Grateful for that opportunity. Good luck back at work!
Love your story and you are prettier today than a year ago.
I agree to respect that others don’t understand someone else’s pain, discomfort, emotion, etc. Many of us look healthy and well, but are not feeling as good as we look.
You are a super strong person in many facets of life but also a very kind, considerate, caring and loving person. You make me the proudest and luckiest father in the world. Love, padre.
Awe…. my number one fan. Love you DAD!!! XXOO
THANK YOU FOR THIS BLOG! I enjoyed reading your story. My 6 month post-surgery was December 12.
Feel free to go on FB and see a couple pictures of my time.
I enjoyed reading your blog. Thank you so much for sharing. My 6 month post-surgery date was December 12.
Thank you and congratulations. It’s nice to be on the post surgery side!!!
OMG, you are my twin out there somewhere!!! That was PERFECT. Thank you for putting words to my exact thoughts.
Hello Amy TWIN! So great that you could connect with this. I was on the fence about writing this very personal piece but something inside made it flow. It’s certainly from the heart and it is a journey. As much as I wish nobody ever had to suffer from this diagnosis, it feels more comfortable to know I am not alone.
Thank you for those words Angel, you made me cry. Perfect words, no one understands what this journey is unless they went through it. My brother in FL texted I will pray for you. How about I will be there with you. They hear surgeon said it’s a meningioma, the answer is well at least it’s not cancer, then I hear they have come a long way with surgeries today you will be in great hands. That’s not the point, it’s still brain surgery. I don’t know how to say I need you here with me. Then I feel I have to appear strong otherwise will be labeled weak. My daughter will be with me, my son is oblivious, my husband says it’s only a 4 hour surgery and the Dr. said it’s going to be fine don’t worry. Meanwhile lives go on holidays planned but I don’t want any part of it since my surgery is Jan 8. I’m doing a lot of self healing meditations, with hope of a miracle. Every so often a friend checks in, hears my voice upbeat and says oh you got this. I feel alone although people are around me. It is my journey but we all need each other. Support groups are wonderful I’m glad I found this one, but I need someone next to me. But then I don’t want lives stopping for me, I feel guilty. I want to postpone surgery but at the same time get it over with, as someone posted want to get over the what if’s. Fear of death is not my worry, debilitation is and being a burden. Again surgeon says it’s not going to happen, it’s their job, of course. Thanks for reading. A part of me feels like saying, “Hey look at me I need you,” another part says, “What’s the point they won’t get it.” Hugs to you. Although we don’t know one another I’m happy we met. I hope you have a fantastic life something tells me you already do ❤.
Thanks so much for sharing this. I know the weight of this diagnosis is very heavy. I have lived it now for 7 years. Most people didn’t even know about it or realize it was a problem for me until I stated I needed a craniotomy. Then people started listening a little more. I must say the pre-surgery stress and fear was WAY WORSE than the post recovery. Believe it or not, it is true when they say it’s better on the other side. It really is a solo journey. At least within your family and friends. Finding groups and others like me can help with having a set of ears who GETS IT! I learned pretty quickly I can’t make a “Thing” of my tumor because it is uncomfortable for others too and their way of processing that which is not directly happening to them is to stay positive, tell you “You can do it” and yes, “Be grateful it’s not cancer!” I agree, it sucks! I am sending you hugs, thank you for reading my blog and best of luck. I hope you stick to your surgery date and I hope even more you will post on this post surgery with some good news to share with me. XO