The Next Chapter

Yesterday was my 12th cerebral angiogram in 16 years. That’s a lot of images, a lot of stress, many procedures, successes, and even failures. Brain aneurysms don’t care what else is going on your life…they show up whether it’s snowing or not.

It was snow that greeted Dave and I yesterday morning as we were up before the sun rose to hit the road to Portland, a 60 mile drive south. Thankfully, we drove out of the snow about a quarter of the way there as a driving rain greeted us at the door of Maine Medical Center.

When multiple members of the hospital staff remember you from previous visits over the years, that should never be a good thing, but it is what it is in my case. I supposed it’s a comfort to see familiar faces who know my story.

Down in radiology, I was prepped for the procedure, hooked up to an IV, and answered everyone’s questions. Dr. Ecker came in to greet me and indicated he was excited to see how the flow diverter he deployed back in April was doing. Well…yes, I was too! He even opened up the images from the procedure on the computer in the prep area to view them with me and Jack, the PA, who has assisted Dr. Ecker with several of my other angiograms. Again…they know me here.

The procedure itself went very well. No issues and no pain or major discomfort. I was a good girl and didn’t move this time as some lovely classical music accompanied the staff in the endovascular suite.

While still on the table and hooked up to everything, Dr. Ecker said that things looked great, then he said “What Eddie Kwan started 16 years ago, ends today!”. Dr. Eddie Kwan was the doctor who performed the original coiling on my ruptured brain aneurysm in 2006 with 16 coils.

What Eddie Kwan started 16 years ago, ends today!”

Dr. Robert Ecker

At first, hearing those words brought tremendous relief and joy, then I saw the last 16 years flash before my eyes in a rapid succession of images…the fear when it ruptured, the loss of my husbands niece, the loss of my sister…my second brain aneurysm, the clipping, the recoiling, the stents…all of it in a millisecond of memories and feelings indelibly etched into my heart, brain, and soul.

20 coils, 1 clip, 1 stent, and 1 flow diverter

After that wonderful declaration by the doctor, a few more images were taken to get a good look at everything else then the doctors left and went to speak with Dave in the waiting room. While the rest of the staff were busily performing their post-procedure routines and unhooking things and cleaning me up, the tears started to unexpectedly flow.

My arms were still hooked up to things and down at my side within the arm guards, so one of the nurses touchingly came and dabbed the tears away from my eyes and face with a tissue for me. They were very comforting, in what was quite a personal and emotional moment for me, and I’m very thankful.

Dave was very surprised and concerned to see tears in my eyes when he joined me in the post-op area about an hour and a half from last seeing me. I assured him they were tears of joy, but he also knew why it was emotional for me because he has been with me through it all.

I was glad to learn what I heard from Dr. Ecker in the radiology suite matched up with what he told Dave seeing how I was a little drugged at the time. The flow diverter (pipeline) did it’s job. It adhered nicely inside the old stent and had paused the flow of blood from getting back into the neck of the aneurysm. He said it was “Done” and I wouldn’t need to go back for five years and it would just be the less invasive MRA scan next time.

The images that were taken yesterday will need to be closely looked at again just to make sure there isn’t anything else we should be concerned about, but during the doctor’s first look on the table, things looked good and it was a great report. I’ll have another follow-up in his office in December.

I pray this is a start of a new chapter in my life where I don’t have to worry about this damn aneurysm anymore. The rest is up to me…live life better and take better care of myself. I am lucky to be here at all.

I am so grateful, thankful, and blessed for the improved medical advancements in treating brain aneurysms and the skilled hands of Dr. Ecker and his stellar care over the last 10+ years. He knows what I’ve been through.

Two Fun Side Notes: Stephanie, my nurse in the pre & post care area is a Buffalo Bills fan and shared photos of her dogs dressed in Bills attire. What are the odds that two Bills fan, in Patriots country, run into each other in the hospital? Then I ran into Sara, our former brain aneurysm support group facilitator on our way out of the hospital. It was great to see her face. Again…they know me here. 🙂

Pitch to the Head

Six years after my craniotomy to clip my 2nd brain aneurysm, I discovered it can still cause me pain.

Although I still generally try to stay away from the area where my bone flap was reattached to my skull, I certainly never expected adjusting a baseball cap on my head would subject me to a stabbing pain!

Such was the case when I went to curve the bill of a relatively new baseball cap today. It was much more rigid than I was expecting and when I tried to curve it with my hand, a large chunk of it hit that dent where my bone flap sits.

The dent

One forgets, or certainly doesn’t anticipate, that area of your skull could potentially still be tender six years after that fact. Oh, I can safely it IS…at least in my case.

A dull ache in that area has remained the rest of the day and I’m sure I’ll feel it a tick as I try to sleep tonight. Laying on that side is always a little iffy. I just never expected to have that kind of pain this many years out. Maybe I’ll put some ice on it and see if that helps. It’s bad enough the bone flat recessed slightly and there is a dent now, but to still have it feeling like this is a bit discerning.

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!

Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.