Category: Family

2014 KAT-Walk & Karo-5K

Published on by heiditea3 Comments

It was chilly for September, even for Maine, and the winds weren’t exactly relaxing but the annual KAT-Walk & Karo-5K held last Saturday was a terrific success! At one point I said the words “My heart is full” to myself after looking out at the many, many people filtering in throughout the brisk morning.

Team Nolan over 160 strong!Over 600 people attended the walk and run this year. We’ve never had that many. Granted there was a busload of school kids and we certainly can’t expect, or rely, on those exact people to attend the following years, but it was great to have that kind of show of support.

To me it never really is about the money raised, but the physical show of support seen on the day of the event. You can’t get that warm fuzzy feeling from a check. You can’t share a hug with a credit card charge. And you can’t feel the sense of accomplishment after finishing the run or walk from a $10 dollar bill.

That being said, we DID raise over $30,000 this year! We are also very proud that the “Maine’s KAT-Walk & Karo-5K Chair of Research” was one of eleven research grants totaling $230,000 awarded at The 8th Annual Brain Aneurysm Foundation Research Grant Awards Symposium. The event was held on Thursday, September 11, 2014, in Miami, Florida.

Our 2014 Chair of Research was awarded to Koji Hosaka, PhD, Dept. Neurosurgery, University of Florida. He is working on identifying proteins that can be coated to the miniature coils used in the repair of Brain Aneurysms. It is anticipated that these compounds will be effective to promote healing and shorten recovery times and complications.

Now, back to those warm, fuzzy feelings. Every year, I’m always struck by the people who show up to support someone who has lost someone or to support another survivor. In fact, at our monthly support group, instead of saying “caregiver”, we voluntarily started calling them “supporters”, which I like much better. There are also many people who attend from out of state.

Two such supporters and fellow brain aneurysm survivors, I had met previously and was honored they came to our event. One was from Florida, via Pennsylvania and the other from New Hampshire.

It was nice to actually walk with someone this time! Lori is a walking miracle surviving multiple brain surgeries & a stroke. With the help of her service dog Tober and her husband Ralph, we were a great walking team and they kept me on stride for probably my best time ever. Yes, I was sore and tired afterwards, but I needed to keep up.

Julie has come to our walk in the past and was a huge help at the brain aneurysm awareness tent getting names and greeting other survivors. Julie has had several struggles with other medical issues including breast cancer and she remains an upbeat proponent of being your own advocate for better medical care. We had the same doctor coil our ruptured brain aneurysm in 2006 about 3 or 4 months apart in Portland, ME.

The three amigos had a grand time afterwards giggling like little girls and celebrated the day with a drink. I enjoyed their company tremendously and was thrilled they joined us and me. Again…it’s that show of support that can mean so much to so many.

The endless hours of hard work put in by so many volunteers is all worth it when we see the outpouring of support to raise awareness for brain aneurysms.. My husband, Dave, had a “To-Do” check list that had over 800 items to be completed. I know his niece Kim would be so proud of the work he is doing and would be embarrassed that an event was named after her. I also KNOW she’d flash that fabulous smile seeing the efforts put forth, and know she’s right there beside us the entire way trying to raise awareness about the silent killer that took her from us.

I believe this event would not be as organized, or look as good (flags, tents, signs, etc) without Dave putting in endless hours of contacting survivors, supporters, and sponsors. I hope people who attend realize the personal contact Dave, and other volunteers, have made to make those who attend the event feel welcomed and comforted. I seriously doubt other walks/runs have that kind of personal communication from an organizer. Not only is Dave MY biggest supporter, but he’s trying to support everyone else touched by brain aneurysms. He knows…he’s been effected in multiple ways by them and I love him for his passion and endless drive to make sure the events go off without a hitch (even checking the tides!) and it looks amazing. We actually don’t see much of each other during the event. He and I have to catch up on the day on the long drive home afterwards with the trailer loaded up with the “circus”.

I also realize the event was overwhelming for me this year. I was extremely tired after the walk. I AM just 8 months out from open brain surgery, and there was a LOT of mental and visual stimulation all day. Speaking to many people, walking, taking pictures, unpacking boxes, re-packing boxes, not much food, and being overly tired from work. It’s a shame no one FROM work was there to see the event we have worked so hard to produce and give me some support. But, I’m blessed to be included with the over 20 survivors who attended the event with THEIR supporters. I had my sister Dori and Kim on my mind and walking for them and myself was a privilege. Good for me! 🙂 It was nice to cross the finish line with someone who knew I had actually crossed the finish line and we gave each other a high five and a hug.

Trailer and car Unloaded at seaside
The trailer & car all packed up and ready to go! Trailer unloaded at Back Cove
Tents set up Dave addressing the crowd
It all turns into this! Dave addressing the crowd at start of race.
The View from Starting Line 20141004-225415.jpg
Great shot of crowd gathered at start/finish line Lori and I just crossed the finish line
20140920-232025.jpg Wall of Honor
Julie, Lori, Tober, and myself The Wall of Honor
My sister's sneaker My sneaker on the honor board
My sister’s sneaker on the wall of honor My own sneaker on the honor board

 

It Has Been A Week

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I have been close to tears about five times this week. None of these times actually produced tears, mostly because two of the times were at work, so I really kept it in, but the other times certainly could have produced tears….but nothing.

Since my brain aneurysm rupture in 2006 I noticed whatever mechanism within my brain that triggers tears, just isn’t the same. I would feel sad about something, and knew I would normally be crying over it, but the tears would not come. I’d be curious to know if any other brain aneurysm survivors have experienced the same thing. However, when those tears DO start flowing it’s difficult for me to shut them off and they completely drain my body and brain of any needed functionality.

Tonight I opened that valve and the tears are flowing. This Sunday is Mother’s Day. Normally a happy occasion for families to celebrate their moms with gifts and spend time with mother’s, granddaughters and grandmother’s. Unfortunately, for my family, it’s a sad occasion and doubly so this year. No, my mother hasn’t left us, but both my sisters have. So not only has a mother lost two daughters, but I’ve lost both my sisters and my niece and nephew have lost their mothers.

My sister Dori had a massive ruptured brain aneurysm ON Mother’s Day in 2012. My husband and I were in London, England when we found out. We cut our trip short to join my family in a two-week, hopeful vigil praying for a miracle that never happened. Technically, we had already lost her on Mother’s Day. I don’t know how my mother or my sister’s son, can ever replace that memory. I know I can’t. Because she died of a brain aneurysm, I’m also tormented by my own demons about how she was misdiagnosed and how I should have pushed her more to insist the Dr’s look closer. Having the “urgent care” president where she was treated admit in a letter, after her death, that aneurysm signs were missed, makes it even more heart wrenching.

My “Family” mailbox in my Email now only consists of my husband and my niece. No other relative emails me. In fact I didn’t even know my cousin’s husband had died because she didn’t email me and none of her brother’s or sisters did. I miss my emails from Dori and Rhonda and Mom. Since mom had to switch to a laptop from WebTV, she hasn’t been able to understand and grasp using a computer, so we no longer have that convenient form of communication. She doesn’t call me, due to the cost, but I call her two times a week. And as I sit here typing this, I am bawling and feeling horribly pain in my head, that is just short of 4-months out of open brain surgery to repair my 2nd aneurysm.

Searing pain around the side of my head that is made worse by the stress of crying…and I can’t stop. I want, and desperately need a day off of work to get some sleep and rest, but there are meetings I must attend. Why I’m asked to attend some of these meetings, when my ideas and recommendations are met with a giant eye-roll and dismissed, is something I don’t understand. Even though I was apart of developing the program that’s being discussed and am very familiar with how it works, being treated that way in front of many others (for a 2nd time) can lead to tears, but I held it together…until now. So on top of grieving again for my sister, I’m dealing with being dismissed at work and just getting there on a daily basis while I’m still recovering.

Then there is my darling niece who will have to endure her first Mother’s Day without her mom because my other sister Rhonda died just 4 months ago. My poor mother has lost two daughters and I’m all she’s got left. And even SHE is having issues right now with horrible pain in her back, which brings back many memories of my sister Dori. She had horrible back pain for months before finally having surgery a few weeks before her death and I’d talk to her on the phone as she was in that pain and knew she had been crying due to that pain.

So when I hear my 87-year old mother talk about getting to the point where the pain makes her cry, how can I NOT think about my sister. I don’t know what to do to help my mom when she’s in NY and I’m in Maine. She’s been to two doctor’s and they’ve given her patches and some meds and told her to stop lifting things. Great. That’s great advice…but do they know what is actually wrong? I doubt it.

So, that crying thing is very difficult. We’re told it’s good to cry every once in awhile to get it out of your system….they say it’s a “good cry”. Well, for me, a cry is never good. My head feels like the skin and muscles are being pulled away from my brain right now. And it won’t settle down, until I settle down. Poor Dave has tried to console me, but I don’t even know what I need. I guess a “good cry” and venting in my blog will have to suffice for now even though I know I won’t feel any better physically or mentally afterwards.

One Day: Post-Clipping

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Friday all day was rough. Sick to stomach most of the night until we were able to get it calmed down with drugs. Finally able to eat something and keep it down early Friday morning, but it was only very bland hospital oatmeal and apples sauce. Not a hell of a lot of nourishment, but it stayed down, so that was an accomplishment.

Not able to eat much that requires a lot of chewing due to sore jaw. That was something I wasn’t expecting – cutting the jaw muscle.

Looks like I went 12 rounds with Mike Tyson and he won.

Face is getting a bit more swollen and left eye is starting to close up. Head pain is coming and going. Taking lots of pills, but having trouble getting comfortable in the hospital bed because I have the automatic compression socks on both legs and their wires and weight make it hard to sleep on side. I can only sleep on one side anyway.

The staff in the 608 ward is fantastic as usual. And boy, they have to be a special breed. Two men needed special care in the ware and all the while the older woman next to me was having serious mental issues and cried most of the night and went on and on about how she couldn’t get her coffee until 7 a.m. when breakfast was ordered. Drove me nuts, but nothing I could do about it.

Dr. Ecker visited this morning and did a short exam and said the swelling was completely normal and that he got some great pics of both aneurysms and got all of the 2nd smaller aneurysm with a great clipping job. Love him.

The catheter was taken out at 6 this morning so I now had to get up and walk myself to the bathroom…with a walker. An occupational therapist visited mid-morning and we attempted to go for a walk with my walker, but we didn’t get too far. I was really shaky and just not up for it, as much as I wanted to. With very little food and more drugs in my system, it wasn’t going to happen. She said she’s stop by on Saturday to see how I was doing, so I had my work cut out for me.

Thankfully lunch was coming up and I was feeling good, so I ordered the backed mac and cheese and OH, that was good and hit the spot. Also a fruit cup. All stayed down and in the afternoon Dave and I took a good walk around the floor. Pooped me out, but felt good to get out and up. Had some pretty good head pain today and that required more pain meds.

I had a great dinner…even by hospital standards. Meatloaf and gravy and steamed broccoli and milk. Tasted soooo good and it all stayed down. Dave and I then did 4 laps around the floor, which was great. I felt good, but tired after that and I wasn’t nearly as wobbly as I was this morning. Things were looking up.

Dave, as usual has been my angel getting me GOOD tea from down in the cafeteria instead of the crappy stuff that comes from the kitchen and even some cookies. He stayed overnight in Portland last night and was there very early this morning. I made him go home early because I was tired and it appeared the night nurse tonight wasn’t particularly in the mood for hangers-on who weren’t patients.

Every two to four hours, I’d get my vital statistics taken and they’d do a neurological testing for my vision and balance. I believe I was doing all of those okay. Just needed to get up more. I was still drinking a lot of water which meant I had to get up and go to the bathroom more frequently, which was a pain because I was still hooked up to a few things, an IV tree and vital statistics monitor.

Thankfully, the IV was stopped in the evening, so one less thing hooked up to me.

Clipping a Brain Aneurysm

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Dave and I both admitted to each other on the drive to Portland that we were both scared last night. We were scared something would go wrong during surgery and I would not be the same afterwards. As a result I would regret making the decision. Well…as it turns out it was one of the best decisions I’ve ever made.

We also both admitted our fears were completely resolved when Dr. Ecker walked into to the pre-op prep room and explained the procedure again. He just oozes confidence. Hower, he mentioned the size and location of the incision and THAT was news. He told us in September the size of the location he opened the skull, but not the size of the skin incision. THAT was much larger and something Dave and I should have though about but never did.

They quickly put me under when I got into operating room, so I didn’t get much of a chance to see either doctor or explore this operating theatre. Previously I had only been in radiology.

The actual procedure only took about and hour and a half instead of the 4-5 hours we were warned about.

I woke up to Dave standing over me and I was already correcting him and Dr. Ecker told me it was a huge success and they he able to place the clip in a perfect spot. He also informed me that the top of the aneurysm was very thin walled…we may have dodged a bullet with this one.

I was taken to the lovely 6o8 neuro ward. The staff is great…the atmosphere is not. I got no sleep and then became very nauseous over night as well. Twas a long night.

My head was hurting pretty bad and my jaw was quite painful. I learned the next morning they had to cut my jaw muscle. Goody!

I also got the first look at my incision. Wow! It’s big and ugly with 53 stitches in the outer skin.