Today’s Top Story

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Now that my family, closest friends, and co-workers know, I can let others know about my aneurysm news. I’m going to have my 2nd aneurysm clipped in January.

I found out in April, 2013, right before we left for Scotland, that my 2nd smaller aneurysm was actually visible on the original scans done in 2006 during my rupture of the other, larger aneurysm, but it was never mentioned to me in those immediate checkups with my old doctor. My current doctor indicated he felt we should start thinking about doing something about it. That scared me and certainly gave me pause about our trip to Scotland. Well..it was more like denial that anything was wrong. I was going to Scotland, dammit. Which we did!

The doctor said his office would call when we got back to discuss my options. They did call in June, but I wasn’t prepared to discuss it just yet.

Then, after our annual walk and run for Brain Aneurysm Awareness in September, I met some fabulous survivors and it gave me the strength to make a decision, so Dave and I met with the doctor at the end of September and the decision was made to proceed with clipping.

Several factors with regards to MY aneurysm and history, made that decision easier. I guess:

  • I have a family history
  • I have previously ruptured
  • The 2nd aneurysm has grown in the last six years
  • I’m still relatively young
  • I have great health insurance
  • I want to go to Scotland again!

Even though Dave and I are, sadly, quite educated on brain aneurysms and the treatments, we went armed to the meeting with quite a list of questions for the doctor. Dr. Ecker spent about an hour and a half with us and his recommendation was to go with the more physically invasive clipping procedure over the less-invasive endovascular coiling which I have had previously.

When discussing both options, he just had to many “if”s with the coiling and the aneurysm itself is more rectangular in shape than a balloon or bulb, which leads me to believe keeping a coil in the darn thing to begin with would be tough. The doctor agreed clipping would be more durable and stable than coiling in this case.

Since I have already had a compaction issue with my other larger aneurysm, which now has 20 coils, I really didn’t want to have to go through the endless checking and worry with TWO aneurysms now. I’m very confident that clipping is the way to go with this particular brain aneurysm

So, after surviving another catalog at work, I will be making plans for the surgery. It’s nice to HAVE the luxury of planning and a date for the procedure. With a rupture, there is no advanced warning. There is no indication you’ll be bed-ridden for months. There is no warning your family’s life will be changed for ever.

By deciding to DO something about my aneurysm, I AM in control…not the other way around. Of course, I’m scared. It is open brain surgery, but meeting, and knowing other survivors has given me the strength to show this aneurysm who’s the boss. I’m one of the lucky ones because I know I have an aneurysm.

The doctor showed me my brain scans, drew me diagrams and showed me where the incision will be made. They shave just that part of the head, then remove a 2-3″ diameter part of the skull along my hairline around my left eye. They’ll isolate the aneurysm away from the artery and place the clip on it. Then close up the skull. Possibly a 2-night stay in the hospital, then home for a 6-week recovery period. It’s not an emergency situation so the recovery period is far less stressful and difficult, although fatigue will still be an issue.

I feel fine. There are no symptoms that something is wrong, and that’s the whole point of doing something now. Could something go wrong during the procedure? Yes, but the risks of that are far fewer than if I let the aneurysm continue to grow and HAVE to do something about it during a tramatic event. Been there…done that…bought the t-shirt Pedro.

Bad form Facebook. Just bad.

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There is a birthday calendar reminder on Facebook. I normally like it as it sends up a reminder a few days before one of your “FRIENDS” has a birthday coming up.

However, I was unprepared for the reminder email I got tonight reminding me that my deceased sister’s birthday is coming up and I should remember to send her a Birthday Greeting.

Excuse me? What? Is this from the same account that we worked with Facebook on in memorizlising after her death? We had to send a copy of the death certificate and proof she had died complete with date, year, and obit to get her account distinguished like that.

Wouldn’t one think if they had received that type of very personal and devestating info, they’d automatically remove that account from being sent out on birthday reminders? Well, that makes sense.

Now, if we want to delete or deactivate the account we’re forced to go through the same damn procedure AGAIN. Ridiculous.

Obviously, I knew Dori’s birthday was coming up this Friday and I was already not looking forward to the day, then to be reminded of it in such a careless way is inexusable and thoughtless. Tears flowed and my heart broke…oh, I’d LOVE to wish her a Happy Birthday but a ruptured brain aneurysm killed her.

Thanks, but no thanks, for the lovely email reminder Facebook.

Seven Year Itch

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Seven years ago last weekend, my larger 11 mm brain aneurysm ruptured. Each year I have tried to do something special to remember that day and celebrate my life. Some “celebrations” have been more elaborate than others, like treating myself to a spa day, and others have been low-key affairs mostly due to the time of year because I’m so busy at work in October.

This year proved to be one of those low-key affairs. I had been working long hours on Saturday for a few weeks, but my annie-versary this year fell on a Saturday. So, I took this day off. Then went out for dinner and a movie with my Maine Man. Nothing incredibly special, but it was a night out. I’ll take it.

However, this year, I got grumpy. Almost ticked off. Not AT anyone per say, but I’m a survivor and no one took much notice. (how were they supposed to know anyway?) I guess I need to climb mountains or run major marathons to get acknowledged, as one local woman did and received a huge article in the paper as a result.

The last few years, at our annual KAT-Walk & KARO-5K, I have met survivors who have survived multiple aneurysms and are beating the odds simply be being alive, much less driving and taking care of their children. Some have more help than others and some are dealing with more issues related to the brain aneurysm. Don’t you think they ALL need some attention and love from the state?

I guess that’s where my celebration of life turned to the dark side. A Twitter friend sent me the link to the local newpaper article. It’s a wonderful story of survival…it truly is, but it rubbed me the wrong way especially on the day of my anniversary. It had nothing to do with the fact a survivor had such a strong light shown on her, and it was truly deserved. I think it’s because I see the volunteers (ALL volunteers) put their blood, sweat, tears, and hard-earned money into publicizing our event every September and this article came out in October. September is Brain Aneurysm Awareness Month in Maine. The article would have been terrific the week prior to our walk – which is the only one of its kind here in Maine (MaineBA.org). It was all about the timing of that article that bothered me.

I don’t know what else we can do to try and get the medical community and media community involved. We’ve made them aware of the events. We’ve given them brochures to hand out. We’ve sent them to our website and Facebook page, but actually getting someone to film, write, and participate in our event and has been a huge struggle. I guess we need a celebrity…oh, wait…we’ve even tried contacting with them too! No Patrick Dempsey or Joan Benoit in our camp to help bring in coverage – just a terrific group of volunteers.

If I HAD the money, I’d name a hallway in Maine Medical Center’s 608 Neuro-ward and call it Heidi’s Hallway. I spent many hours walking that hallway….sometime’s running into the walls, somethings only making a few steps with everything that was hooked up to me. I’m one of the lucky ones, but I’m unable to get more focus on the people who have survived ruptured brain aneurysms. If I had more money, I’d sponsor a car in NASCAR for Brain Aneurysm Awareness and get to yell “Drivers, Start Your ENGINES! with a group of survivors”. If I had more money, I’d sponsor a night at a Portland Pirates game for Brain Aneurysm Awareness and have survivors come out on the field and be recognized…together as a united, strong front. If I had more money…I’d have my sister scanned to make sure she too, doesn’t have a brain aneurysm like our sister Dori had. But I don’t, I haven’t, and I’m unable to.

All I can do is continue to bring awareness to brain aneurysms without much money and support from the state or medical community, but through the kindness of family members, friends, and complete strangers who have been affected by brain aneurysms. I HOPE our efforts have helped save some lives. I HOPE other survivors see our stories…read our stories, and come to share THEIR stories with us at the KAT-Walk & KARO-5K each September. It’s all we can do with limited funding and a large group of caring volunteers here in Maine.

So, you’ll just have to forgive my selfish rant that an article wasn’t written about ME on my 7th annie-versary. I should get an award just for survivor the months of August, September and October at work. But I’ll take a quiet dinner with my Maine Man and a movie – that’s probably more than a lot of survivors get.

Stay strong, be proud of your accomplishments, and tell people your story…it could save a life and help other survivors know they’re not alone.

2013 KAT-Walk & Karo-5K

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After months of planning, fundraising, publicity, and hard labor, the morning of September 7, 2013 arrived with anticipations high and temperatures low. As the sun gradually warmed our faces, our hearts were enveloped in the warmth of compassion, community, and accomplishment throughout the day.

As it was for me last year, I was again struck by the number of people from out of state and locally who have been touched by brain aneurysms who chose our event to honor themselves, a loved one, or friend.

The KAT-Walk was originally started by a small group of people wishing to honor and remember the shining star of our lives, Kimberly Tudor who we lost at the age of 32 to a ruptured brain aneurysm. Those of you who knew Kim know the number of adjectives to describe her are limitless. Her loss, at such a young age, was very difficult and finding some way to DO something was very important.

At the time, there were no social events or groups in Maine specifically related to brain aneurysms. A walk along the Back Cove, where Kim enjoyed walking herself, seemed a wonderful way for us to be together and celebrate her life, as well as educating the public about brain aneurysms.

Because I had survived my own ruptured brain aneurysm two years prior to Kim’s death and I was dealing with my issues and demons as a result, the planning, advertising, and discussions for the walk were difficult for me…as well as everyone else. But we felt it was important and it became a real labor of love.

Our original event planned by a small group to honor OUR loved one, has turned into such a bigger event than any of us could have imagined. Those of us who knew Kim, will always know the KAT-Walk is in HER honor, and there is a natural ebb and flow to the amount of participation among Kim’s friends and family that is inevitable at an event like this.

I know the Susan G. Komen breast cancer events started in memory of Susan, but the events themselves have become a gathering place for survivors, friends, and families from all over who have been touched by breast cancer. They never knew Susan, worked with her, or know her family, but the common bond that does unite them is, sadly, breast cancer.

The same holds true for our event. The first year is the most powerful emotionally for those effected by a brain aneurysm, and the love and support from family, friends, and co-workers is what gets you through that delicate time. As lives moves on, so do friends, family and co-workers. It doesn’t mean they don’t care or remember the effected person, it’s just life. And attending events like this don’t hold the importance in THEIR lives as it does in yours. It can be discouraging, but we can only do so much.

We have been so blessed that the group of individuals associated with our walk and run continue to hold fast to our motto to “share our tears, remember with love, walk & run to honor” those effected by brain aneurysms. Our KAT-Walk and Karo 5K committee is comprised of family and friends who have lost loved ones and survivors. Half of them never met Kim, but they do know someone else who was effected, or are survivors themselves and want to contribute in educating the public. The desire to DO something can be a strong motivator.

Karolina Kurka’s family and friends needed a place to grieve and gather in a meaningful way that would also support brain aneurysm awareness. Karo was another beautiful, young, vibrant woman struck down by a ruptured brain aneurysm. Her family chose our walk to do that only a few short months after losing her, and as a result, the Karo-5K was born and many of Karolina’s family and friend are an integral part of the planning and fundraising.

This year, as I sat in the Brain Aneurysm Awareness tent, it was wonderful to see returning local and out-of-state survivors make the trip again. It doesn’t hurt that Maine is a beautiful state and the setting for the walk and run is visually appealing either.

But what struck me most was the number of new survivors I met and how they had heard about the event, made it a goal to do the walk or the run, and worked very hard to accomplish that goal. In some cases, simply making the trip to Portland, was an accomplishment.

The phrase “strength in numbers” came to mind as I met, hugged and shared stories with other survivors. Just as breast cancer survivors join together at Susan G. Komen events and take great pride in surviving something many hadn’t, brain aneurysm survivors know the immediate, and sometime’s deadly dangers a ruptured  brain aneurysm can bring. We SHOULD be proud we’re still here and we SHOULD let the public know about.

According to the Brain Aneurysm Foundation, a brain aneurysm ruptures every 18 minutes in the United States. With other illnesses and diseases, you are diagnosed and it doesn’t kill you instantly.  Ruptured brain aneurysms are fatal in about 40% of the cases.One of the major goals for the KAT-Walk & Karo-5K event is to raise awareness about brain aneurysms. Locally, there is very little in the way of medical support groups. Those of us who have already been effected by brain aneurysms, are already acutely aware of some of the sudden symptoms, if you’re lucky enough to have any symptoms, but knowing what to expect during recovery and knowing you’re not alone, was something sorely lacking in the state. It’s days like Saturday that give me hope we’re making some positive progress in that regard.

A survivor who was still recovering from a recent rupture, was comforted in knowing her fatigue, short term memory, and physical awareness could, and probably WILL improve, simply be seeing and meeting other survivors and hearing that it’s okay to be frustrated. Been there, done that…bought the t-shirt!

I also met several survivors who are just damn lucky to be here because of misdiagnosis by the local medical communities. THAT is an issue high on our list of things we’d like to see improved. One woman lived with her rupture for six days before someone FINALLY scanned her. Not only does our medical community need to know the possible symptoms, but if we can educate the general public to those signs, we might save some lives if people get themselves to an ER sooner and insist on getting their head scanned. My own sister may have been saved if she had had a proper scan well before her ruptured aneurysm took her from her soon to be, sixteen-year old son.

The walk is always bittersweet for me. I am a survivor, I’m also living with another aneurysm. I walked for Kim the first year. I walked for my sister last year. This year, I was literally fueled by the positive energy I encountered meeting with other survivors before the walk began.

If you’re diagnosed with an unruptured brain aneurysm, just as it can be now with breast cancer, it does NOT mean a death sentence. There are procedures and treatments that can be performed and you’ll continue to live a long and healthy life afterwards….and making people aware of THAT is also very important.

Well, hell….it’s ALL important, and our messages are starting to get heard which is a very satisfying feeling. If we can save one life, comfort one survivor or family member who has lost someone, then the volunteer efforts put forth by our group of loving individuals who just wanted to honor our beautiful Kimmy, will not be in vain. And I know those angels who were recognized on our honor board and by teams bearing t-shirts with their names and photographs on them, are looking down and smiling.

To all my fellow survivors, KEEP LIVING!

PS: Next year, we’ll work on making sure a photograph of survivors is taken the day of the event.