It’s Show Time!

Because this is MY blog and I can write whatever I want, allow me to toot my own horn for a wee bit.

For many, many years, we have tried unsuccessfully to reach out to local print & television news outlets for coverage of our organization’s efforts to raise brain aneurysm awareness in the state. We have provided stories to the right people at the right times, but there has never been coverage of our annual KAT-Walk and Karo-5k.

Last summer we FINALLY received some television love after I responded to a local news reporter’s story on Twitter. She immediately responded to my reply and Dave and I ended up hosting the reporter in our home for a short interview and two very short spots on the local news station that evening.

NewsCenter Maine Video 1 — WATCH NOW

NewsCenter Maine Video 2 — WATCH NOW

A few people saw these videos and commented and we have no idea of knowing how many people actually saw the report and subsequent videos on social media, but if one person saw them, listened to what we said, and went to the hospital to get checked, it was worth it. We haven’t heard if anyone came to our KAT-Walk & Karo-5k as a result of watching the story either, but we still want to get the word out there.

When Mira, one of our committee members who lost her 27-year old daughter Karolina to a ruptured brain aneurysm, was trying to solicit sponsorship funds for our walk & 5K last year, she met a Portland, Maine lawyer. Derry Rundlett offered up his services in the form of impersonations of Elvis and Jerry Lee Lewis at our Dance for Awareness event in March, in exchange for a television appearance on his monthly cable show in Portland.

Derry is 75-years old, full of energy, and was extremely generous with his time and money at the dance. His performances were great fun and fit in perfectly with this year’s Rock n’ Roll theme!

Dave agreed to be on his show some time in April. He asked me to be a part of it as well, so we drove down to Portland, met Derry for lunch, then walked over to the studio to film the 25-30 minute show.

Because Dave and I have spoken to so many groups and organizations about brain aneurysms over the years and how we came to be involved with raising awareness, speaking to Derry came naturally, it was just in front of cameras and in a studio this time. Neither of us were nervous but we certainly wanted to make a good impression, represent our organization well, and raise awareness about brain aneurysms. I think we were successful on all counts.

We had a rough outline of the show, but weren’t aware of exactly what questions Derry would be asking us.

Watch the Derry Rundlett Show about Brain Aneurysms in Maine

WATCH SHOW – approx 25-30 minutes long

Although I have spoken to many people about my own experiences with brain aneurysms as well as about my sister’s death from one, for some reason after this taping I was quite sad and subdued on the drive north back home. Dave and I chatted a little bit, but I really wasn’t in the mood to chat. I have yet to figure out why talking about it on this specific day and in this arena made me sad. I suppose it just “hits me” on some days. I also think because Derry expressed such an interest and appeared to be deeply touched by our stories and our efforts, it rubbed a nerve/emotion that had been resting comfortably for awhile.

And, as usual, I don’t hear much feedback from my friends or co-workers when these shows are brought to their attention, which also depresses me. I need to stop expecting that support. If I stop expecting it, then I won’t be so disappointed when it never comes. You’d think after 12 years I’d learn….oh, well. You can lead a horse to a computer or cell phone, but you can’t make them watch things, right???

Seize The Day?

The Latin saying Carpe diem means seize the day or live each day to the fullest.

Do I Carpe diem? If I’m honest, no I don’t. Being a double brain aneurysm survivor, I SHOULD seize each day, but I don’t. Am I grateful? Of course, I am.  Do I wake up each morning and think “I am so grateful and blessed to be here”? No, I do not. I should…but I don’t. And those people who say they DO wake up each morning and actually think about how blessed they are, the skeptic in me thinks, “Really?”

MY first thoughts every morning are that I’m very tired, or my back or head aches, or that I slept far too long on my left side, which is a bad thing because of where my craniotomy is. No, my first thought usually isn’t how grateful I am.

I wish I could live each day to it’s fullest and feel grateful every day. Although I am one of the fortunate ones who still can, I need to work to pay the bills and secure good health insurance. I think more about those things. And I do more work than Carping that diem.

What I DO think about every day is brain aneurysms. How can I not? I think about my own aneurysms and the issues I still face. I think about the paths people’s lives, not just mine, have been forced to take as a result of brain aneurysms.

The parents who has lost a child. The husband who has lost a wife. The child who has lost a mother.  All of those people I have met and they are a part of my life now due to our shared experiences of losing a loved one to a brain aneurysm.

Brain aneurysm survivors are also a part of my life. We share a bond. We share our fears. We share our frustrations and scars with one another.

I’m not crazy about the month of October, so I’m always happy when I make it through the month. It’s VERY stressful at work in October and my family history has many sad occasions and memories that have happened in October. I suppose I should be grateful the month goes by in a snap…suddenly it’s November. It’s cold. All of the colorful leaves have fallen off the trees. One of these years, I WILL get to the mountains of Maine, stay in a hill-top cabin and view the fall foliage. Something I have yet to do since moving here in 2000.

September is the month when I FEEL the most grateful for being alive and being able to share my brain aneurysm story and help anyone I can. It’s the month chosen for our annual walk and run to honor the lives of two beautiful young women taken far too soon by ruptured brain aneurysms.

Then that pesky cynic within me thinks…I’m pretty sure no one I know would have organized a walk or run in MY honor. That’s how loved and adored these two young women were and how many friends they had. I couldn’t even get one person to visit me at home during both of my recovery periods….which were 6 and 3 months respectively. Yeah…I’m pretty sure I would have still remained just part of the statistics had I not survived. Which makes MY survival even more difficult to take. Why did these two young, vibrant, popular women have to die and I’m still here? I guess it’s to share my story and theirs. Lucky me? I’m grateful? Yeah…sometime’s it’s very difficult to feel that.

BEING grateful every day is a given in my case. If I wake up…yeah, that’s good! FEELING grateful is a whole other animal and it hits me at moments, rather than an every day thought.

I remember feeling grateful at the end of October when my devoted husband and I pulled into the driveway after two weeks in the hospital after my rupture in 2006. Although I wouldn’t return to work for another six months, it was a relief to be home. I was grateful to see the inside of the house I had come to love and to pet my kitty cats again.

I was overcome with emotion that following spring when I walked out to my garden for the first time and it hit me that things were starting to come alive again, as they do every year and that I was grateful, lucky, and blessed to be able to see my garden again. To smell the wet soil. Feel the wind on my face. Yes….I WAS grateful and very emotional as a result. It could have all ended in early October for me.

I feel grateful every September during our annual photograph of brain aneurysm survivors at the KAT-Walk & Karo-5k. I am grateful to be alive and to share this photo with other survivors from all over the state of Maine, New England and the country. I FEEL those moments tremendously.

It’s far too easy to assume someone who survived a life-threatening illness or medical emergency is grateful and lives each day to the fullest. Many don’t have the luxury to do so. Many have such horrible deficits that just living each hour is a struggle. Do they have time or the capacity to even THINK about being grateful? I doubt it.

Without even knowing it, I do believe I am grateful on a daily basis. I can rattle off a list of the things I am grateful for. It’s that seizing the day thing I still have to work on. I’m very tired.

 

Always There

At tonight’s brain aneurym support group meeting, I was reminded of the potential peril I may still be in.

My neurosurgeon/interventional radiologist gave a presentation about new treatments of cervix carotid artery brain aneurysms — aneurysms on the carotid artery in the neck. This was very relevant to one survivor in our group who has a 2nd aneurysm that is being watched right now in that sam area.

This report was originally given to neuro-medical doctors and was quite detailed with highly-medical terminology.  As explicit as it was, one was able to get the gist of it: they’re doing some pretty amazing things these days and saving lives.

The report was also funded by a research grant sponsored by our Maine Brain Aneurysm Awareness Committe, and Dr. Ecker explained how the money we gave was being used to purchase the detailed imagery needed for this paper. We are thrilled to be able to do it.

This presentation was about 30 minutes interspersed with questions from our group and Dr. Ecker giving us great explanations. Then a second, 10-15 minute presentation was given regarding his use of the pipeline procedure which is saving many, many lives and used more and more. I only wish it could be used with my case.

It was humbling of Dr. Ecker to admit that there are some aneurysms that are just trouble makers and that they can only do so much in some cases. Meaning, they’re still only human and one of their biggest challenges is the interaction between metallic fixtures and human biology with in the brain.

Some people just have such funky arteries due to vascular disease that the doctors can try and try to do everything they feel is right but due to the physical makeup of their arteries, it’s a challenge. I’m pretty sure I’m one of those challenges with my larger1st aneurysm.

Dr. Kwan, my doctor at the time in 2006, did the best he could at that time to fix my 1/2″ diameter brain aneurysm and save my life.  It worked…for five years until the 16 platinum coils inserted into the aneurysm started to compact and blood started to get back into the aneurysm.

Enter Dr. Ecker and the stent and four additional coils he added to my metal repertoire. This procedure went very well and everything looked great. Until more blood started getting into the neck of the aneurysm again and we are now watching it.

Because I already have a stent in that artery directing blood flow past the neck of the aneurysm, it’s highly unlikely and not recommended that using the pipeline will, or CAN be used to keep blood from getting back into the aneurysm.  And the research and reported procedures on putting a stent inside of another stent with similar conditions is non-existent. Hence…more waiting.

In the meantime, I live my life one day at the time hoping more blood isn’t getting into the neck and forming a bulge there that may, or may not rupture. I don’t have high blood pressure, I have never smoked, but I do have a highly stressful job for about 3-4 months of the year and I am not eating that great or exercising. From what I see, even if you ARE in great shape…if your arteries are “funky”, they’ll do what the want to – aneurysms really don’t discriminate.

Dr. Ecker and I have previously discussed options and they’re quite limited at the moment, but seeing the groundbreaking procedures that are being done in our very own state is giving me hope that a solution is in sight. I’d prefer NOT to be one of those challenges, but my arteries have other ideas.

I don’t think about it everyday, but certainly after a session like this, it’s the topmost thing on my mind and knowing there are doctors and a great staff here in the state of Maine is a comfort. I KNOW they’ll do their best and I KNOW they’ll give me the best advice and recommendations at their disposal. We are blessed to have such talented doctors in our state who are taking such good care of us. THANK YOU!