I received a disturbing email from my friend, and fellow annie survivor, Julie, about the miracle man who performed our coiling procedures.
Apparently, he is no longer at Maine Med, or moved to Mass General, or was fired…..we don’t know yet. I dread finding another Dr. I’m so tired of having to go through my history with so many doctors and I trusted Dr. Kwan very much.
I asked Julie to let me know when she found out more.
I had a Dr’s appointment today and the word “Brain” caught my eye on a brochure in the waiting room so I grabbed one. It was a brochure to advertise the Walk For Thought on March 22nd to support the Brain Injury Association of Maine. Something about it just struck me and I wanted to participate in some way.
Well, I had 50 minutes to wait for the Dr., so I decided I’d take the plunge and register for the walk. It’s a 3-5 miles course. I’m not sure I can do the whole thing, at least not without some breaks, but I’m willing to give it a shot to support the kind of programs the the BIAM offer because my recovery could have turned out very different and both Dave and I could have been in great need of their services.
I registered, then sent out some emails to get donations for my walk. I was amazed at the instant generosity by my co-workers. One co-worker reminded me her father had suffered a ruptured brain aneurysm 11 years ago. He’s very different, but he’s alive and is still here for her…others have not been so lucky…so I walk!
I also walk for my cousin Jennifer.
Now, it is no secret to those who know me, that my handwriting never was pristine, but after my annie rupturing and coiling, it is worse. Taking a quick note requires a team of archeological scientists to come in and make sense of it. I have to be very deliberate if I expect anyone else to read it. However, it WAS even worse at one point!
Dave’s sister had given me a note pad in the hospital, along with some other goodies, and while cleaning up some papers around my desk today, I just discovered some notes I had taken while in the hospital. Wow, was my handwriting REALLY bad at that time. I’m amazed I can even read them.
I obviously had intentions of recording the events in a blog or journal of some sorts in the future as I discovered one notation entitled:
”You know you’re in the hospital when…:”
There were also other scribblings. I think I started to write some things down after seeing the Dr’s because they’d always come in so early in the morning, I’d never remember what they said by the end of the day. I was also writing down terms to look up online later to make sure I knew what people were talking about.
And I recall the occupational therapist coming in and asking me to write some things and that was rough to remember how to write that first time. I had to write my address…I think. I can’t quite recall.
Anyway..my handwriting still isn’t good, but at least it’s better than it was when I was in the hospital. LOL
My 2nd cousin, Jennifer, has been battling brain cancer since 1999. The fact she’s even here is a miracle and yet she continues to show such strength and character through pain and trauma. I’m in awe.
Her brother, TR set up a web page on the website The Caring Bridge. I have never heard of this website, but it’s a fantastic way to keep a wide range of people from all over the country up-to-date on the progress she is making.
As I was reading the posts and Jennifer’s story, and realizing just how long she has been battling this, it struck close to home. It hit me that only a little over a year ago I may not have been here and here she is being so brave and putting on a strong face when she’s in so much pain………I got very emotional. It just hit me suddenly. I’m small change compared to what she has had to endure. I don’t know why it’s hitting me so strange…..perhaps I’ll find out when I see my therapist next week. Survivor’s guilt?
I also have two other 1st cousins who have battled aneurysms and thankfully, we’ve all WON, but with three 1st cousins with annies and the daughter of another with brain cancer, I’d think all of our cousins would be running to have MRI’s and angiograms….they SHOULD. I know my cousin Toby has had an MRI (I believe) since her sister and I had our annies coiled…and thank God everything looked good, but I worry about my two older (40’s & 50’s) sisters who are heavy coffee drinkers, drink alcohol and have been smokers for many years. All things I’ve read that make them at risk for annies. Hereditary, smoking and age – it makes me scared.
I’m scared for Jennifer and yet I’m hopeful the new and progressive treatments she is about to undertake will help her. God has kept her on this planet for a reason and hopefully he still has other plans for her here.
For those of you with family members battling illness, check out The Caring Bridge website. It’s a terrific vehicle for sharing and sending messages to those who need it.
Heidi's Brain Blog 