15 Years and Counting

15 years ago today my first brain aneurysm ruptured. The previous day, I had just finished the initial layout for the entire catalog. What a huge relief to finally know it would all fit after a stressful five months. I still had a great deal of work to do yet on the catalog, but my brain had other ideas on that chilly October morning.

I am still around today for several reasons:

  • My bleed didn’t kill me instantly
  • I listened to my own body and had Dave take me to the ER
  • The quick work of the attending physician at Maine General who immediately sent me in for a CT scan where the blood on my brain was detected
  • The high-speed and safe driving of the EMT ambulance squad who got me to Maine Medical Center in record time
  • The skilled hands and eyes of Dr. Eddie Kwan who performed the endovascular coiling on my 1/2” brain aneurysm the next morning
  • The compassionate, and hard-working nursing staff at Maine Med who attended to me for 21 days
  • The many prayers from my family and friends
  • My Maine man, whose constant care and attention gave me the strength to get up each morning

Dave, my rock, my constant companion for over 20 years. I am so fortunate that I was discovered on AOL by this GOOD MAN in 1998. Not only am I amazed, blessed, and thankful by the care he provided ME while in the hospital and in recovery, but also by the time and attention he pays to other survivors we have met over the years. The world, and MY world, is a better place because of you, Dave. THANK YOU!

Brain aneurysms don’t discriminate and my story isn’t unique. There are thousands of people just like me around the world. Brain aneurysms don’t care how old you are. They don’t care what race, gender, political leanings, or financial situation you are in. A ruptured brain aneurysm can happen to anyone.

Although I started sharing my story on https://heidisbrainblog.com as a way to keep my family and friends updated on my recovery, it became a therapy of sorts to fight my way back, relearn the computer, hand-eye coordination, and connect with others going through the same thing.

It was wonderful to discover I was not alone and others were going through very similar struggles. I’m so thankful to the other survivors I have met over the years. Each of their stories have touched me and given me strength.

I am not a glorious survivor. I haven’t run marathons to prove my incredible physical strength, or started podcasts proclaiming a new-found energy and awareness for life. I haven’t shown the world my face on tons of YouTube videos (okay, I have a couple out there) or written a book, but I am surviving every day….and I think that’s pretty damn good.

15 years…and counting! Happy annie-versary to me.

Words from the Past

I have been de-cluttering lately. Throwing out, or donating things that I haven’t used or looked at in years. If it doesn’t hold a strong, personal attachment, why keep it? The person who will have to clean up after I’m gone, won’t know if it was meaningful or not…or even care. If it’s taking up space and there is no sentimental value…get rid of it. Quite liberating.

Today’s wee task was a small basket filled with greeting cards. I remembered they were mostly “Get Well” cards from my craniotomy in 2014, but also forgot it was shortly after the loss of my other sister Rhonda. So, there was a mix of sympathy and get well soon cards. Odd.

Many were from co-workers, distant friends, and relatives who had heard about my surgery. Some were very poignant and meaningful and others were funny and distracting.

One such card was from my own mother. She always found THE best cards. Once card I received while recover in the hospital from my ruptured in 2006, was the perfect card for me. A painting of the sun sitting in a bath tub — one of my favorite pastimes. The writing on the outside simply said “The Sun’s Day off”. I have it framed in my office at home.

The card I stumbled across today from this surgery was so MOM. Funny, unexpected, and unique…just like she was. Even more shocking was the expletive inside. 🙂 But I LOVED it. It made me smile and laugh then, and it did so today when I reread it.

Little did I know that just 9 months later, I would also lose my mom. So, finding these cards is very, very bittersweet, but this one made me smile and laugh out loud! I “had fun” with this card, which is what she always used to tell us. God, I miss her.

Since that time in 2014, two of my co-workers have been lost due to cancer. Both were devastating blows and they were taken far too soon. Seeing their names and words was moving especially knowing how they would both struggled with their battles against the horrible diseases that overtook their bodies. I hope I was able to give them the same kind of support and comfort they gave me.

One such card was a beautifully penned, simple note from our photographer John. My sister Rhonda has just passed away and he had read about it on my brain blog. He comes from a large, loving family and his words about pain, loss and family meant the world to me then…and still do today.

I vividly remember that day like it was yesterday. I came to work and found a small orange envelope sitting on my desk. As I opened it and read John’s words about losing my sister, they hit my like a ton of bricks. After my eyes welled up with tears, I immediately walked over to his cubicle, thanked him for the card, and we hugged, held each other, and cried together.

John was also dealing with his own demons fighting cancer. Knowing how precious the time we have on this earth is, for him to take the time and acknowledge the pain I was going through while he was enduring his own fragility being the father of two young girls, meant even more. I miss him every day at work. He was a special, special human being.

All of these cards gave me strength when I needed it and gave me strength reading them again. Grief and healing went hand-in-hand during that period of my life. Neither were easy. I struggled with proceeding with the brain surgery such a short time (2 weeks) after losing my sister. I didn’t want to put my mother and my niece through anymore worry and pain. THEY were the ones who told me to go forward with the risky surgery. And it turned out it may have saved my life.

I thank those who sent cards. No one visited me at home or in the hospital, but the cards meant a lot and made me feel less alone in the world – even for a short time. THANK YOU!

MRA Results

I have added some new images to my brain photography exhibition after my latest MRA last week to check my vascular health. I haven’t had one in two years, so the scan-xiety built up a little bit the day & evening before. Not that I was nervous about the MRA, I have had plenty of those (see the previous blog post!) but it’s always the results that create that uncertainty.

I was especially worried about this one because I haven’t been taking care of myself the last two years. I’m not exercising, I’m not eating right, and since my last MRA in 2018 I had developed high blood pressure. All three of those things are NOT good for maintaining good blood flow in the brain…or elsewhere for that matter. I take full responsibility…no excuses other than being lazy.

I have been reticent to sign up for all the online medical charts offered by the hospitals lately, but I decided to sign up for the one used by the state. As a result, I could view the initial findings of the MRA online on a Sunday before the doctor’s office ever called me on a Tuesday. I’m still debating whether that is a good thing to have or a bad thing. If the results have come back badly, I’m not sure how I would have handled that.

THANKFULLY, the findings were positive and my doctor’s office confirmed the diagnostic radiologist’s report with his reply and recommendations for follow-up.

Here are the main things that came from the report:

  • There is normal flow within both vertebral arteries. No other aneurysm is identified. There is normal flow within both P1 segments and in the right middle cerebral artery.
  • Stable appearance of the coil embolization and previously clipped left internal carotid artery bifurcation aneurysm. Small amount of flow is unchanged or slightly less apparent in the region of the aneurysm neck that measures between 3 and 4mm in size.

The first point is the best one, indicating no other aneurysm was found. I am at higher risk with my family history and my own history with two already.

The second point was also good news about the bloody remnant (narrow area where blood is starting to creep back into the aneurysm) at the neck of the original brain aneurysm being “unchanged” and that it may be “slightly less apparent”. We have been watching this remnant for several years now and I’m always nervous it will increase in size, or create a weak area and possibly burst.

When the doctor recommended I come back in a year for another MRA, I was surprised it’s not another two year follow-up. So, I have sent in a question asking why.

Celebration Tea

I am blessed to still be here and share my story with others. Keep on living. I am enjoying a celebratory scone with tea to celebrate!

I Am Lit

As I get prepared for my 2-year follow-up MRA this Friday, I was curious to see just how many angiograms and MRA/MRI’s my brain has had since 2006. Thankfully, I was able to get a pretty good handle on that number by simply searching this blog. I was surprised by the number…but not really.

CEREBRAL ANGIOGRAMS

I have had NINE cerebral angiograms which include three treatments that are performed using this same process: my initial coiling, then my stent placement, and recoiling were all performed using angiography.

A Cerebral angiography provides x-ray images of blood vessels in and around the brain, showing abnormalities like brain aneurysms.

PHOTO: John Hopkins Medicine

Typically a catheter is inserted into the femoral artery in the groin and threaded through the circulatory system to the carotid artery where contrast die is injected. A series of images are taken as the contrast agent spreads through the brain’s arterial system, then a second series as it reaches the venous system.

MRA/MRI

I have also had SEVEN MRA/MRI’s. Magnetic resonance angiography–also called a magnetic resonance angiogram or MRA–is a type of MRI that looks specifically at the body’s blood vessels. Unlike an angiogram, which requires inserting a catheter into the body, magnetic resonance angiography is a far less invasive and less painful test.


PHOTO: My brain bling via MRA imaging.

The frequency and type of follow-up procedures I receive hinge on the previous scan showed and what procedure was provided. We’re hoping I can continue just getting MRA’s, but if something unusual shows up, more angiograms may be needed. Angiograms are more invasive and risky, but they are the gold standard for getting the clearest images of my blood vessels.

I am blessed to have had such a great neuro team here in Maine and terrific health insurance coverage through work.

Here’s to more scanxiety.