9/16/11

It is Friday and I have come to realize that I should provide some sort of update.

First please don't be upset with me for not sharing the following details sooner. I felt it was important to get through the worst and complain and moan to the walls, so that I could enjoy the best and carry on a conversation without complaint.

During the last part of July this year I found out that I had an infection brewing in my head. On the 27th I went in for surgery to allow the experts an opportunity to take a look inside my noodle again. With steady hands and much patience the bacteria was cleared out along with a portion of my skull. The portion of bone removed is called a bone flap. The missing portion of bone is about the size of the palm of your hand. Placing the palm of your hand on your hair line on your forehead and that is about where the portion of bone was removed.

Just when I was wearing my hats less I am now back to wearing them every day again. Gosh.

Some of the details:
The infection began to make itself know in the middle of July when a significant area around both eyes began to puff. This included my eyelids all the way to my eyelashes and the entire area around the bridge of my nose. I went to see my GP who gave me some oral antibiotics, which took care of the swelling but then I began to grow a horn on my forehead at my hairline. After that broke open and began to weep I thought "O.k. this is good. I'll let it drain, scab over and move on with my life". That was not what happened. It just kept weeping. So I went in to see my neuro surgeon, who I had not seen in over 3 years. It was after that visit that I was told to be back at the hospital the next morning at 6am. No food or drink after midnight the evening before. Then I hung out at the hospital for the next 3 days. I also received a PICC line, which by they way is a gift from the almighty. A PICC line is a semi permanent iv line placed in a persons arm thus allowing for the body to accept liquid drugs at anytime. An added bonus, and I am saying this with ZERO sarcasm, blood draws are super easy. No additional pokes. Just hook up the tube to the line and let the blood flow.

What I have learned:
I have learned to give myself medicine via my PICC line. The liquid is in a syringe of sorts. I have also figured out that I have a new "guy" at the infectious disease pharmacy who runs point for me when I need him to. Awesome! I have learned that having an nurse who will drive to my home to draw blood ROCKS. She is very cool and will also make phone calls on my behalf which helps so much. I was reminded that driving takes A LOT of concentration and concentration takes energy and energy requires the body to eat and sleep.

The treatment plan:
I will be wrapping up 8 weeks of iv or liquid antibiotics next month and then my PICC line will be removed. Then I will begin about a months worth of oral antibiotics. After this I will be in a wait and see phase. We will wait to see if the infection manifests itself again. I'll know if the bacteria are still there because my forehead will begin to itch like crazy and my eyes may puff up again. After we (the surgeon and I) believe the infection is gone then and only then will my plastic surgery be scheduled. Yup, there is another brain surgery in my future. I will receive a piece of plastic shaped to fit my head. There are 2 benefits to this surgery. ONE - My head will look normal again. And one day I'll be able to wear less of my camouflage. TWO - I will receive a mini face lift. Hooray! Two birds with one stone.

Where I am at:
I won't lie, those first 2 weeks after the infection surgery SUCKED. I'm a little ashamed to admit that if there was an option for me to quit and give up during that time frame I would have. I couldn't stand the sight of my face in the mirror, my head itched like crazy and I had horrible headaches again. Fast forward to today. I feel better. I can do almost all of the things I was doing just before this surgery. I go for short walks and I'm able to make dinner. Dinner sometimes includes a spoon, milk, and a bowl.

What I see happening:
Once I get that plastic in my head I am looking forward to growing my hair back out, and going for another hike. I am going to focus on having an Attitude of Gratitude and make a serious effort to enjoy every persons company I come into contact with. If you are reading this blog YOU are not the "person" I am making an effort to be around. Finally, I see my 2011 holiday season being enjoyable and special.

Best,
Jen

April 3rd 2011

Have you ever signed up to do something and then realized, "Oh, I'm supposed to fund-raise?" It has happened to me recently. The the thought that ran through my mind after I signed up to participate in the 2011 Brain Tumor Walk in Denver was closer to "Right! I need to help raise funds". The walk will begin around 8:30 June 14th in Denver at Sloan's Lake. We will walk around the lake once. I do not have the words to properly describe how many times I have asked myself "Why did I get fred" or "Why me" or Why now"? The only answer I've ever been given is "We don't know". I am asking for your financial support. If you have the desire to donate you can do so online at www.braintumorcommunity.org select donate, then type in my name OR you can mail a check made out to NBTS: National Brain Tumor Society Denver Brain Tumor Walk 124 Watertown Street, Suite 2D Watertown, MA 02472 - list my name on a slip of paper or in the memo field of the check. That's it for my request to help fund research for brain tumors. I might start talking about the walk more and more as we get closer to the date because I'll be excited about it. I will not be asking you for donations face to face, via e-mail, or snail mail. You have done so very much for me and Derek over the last 3 years and we both know it. If you do donate, thank you from my whole heart and what is left of my brain. Best, Jennifer

March 22 2011

Today I'm feeling good. I volunteered at Meals on Wheels, took a nap and then did the things at home that must be done.

My A-HA! moment was when I realized that when I am with a group of people I seem to find a hidden reserve of energy that keeps me going. Why am I bringing this up? A couple days ago I went for a snow shoe hike with some other cancer survivors. I did really well, then the physical and mental exertion caught up with me. It took 3 days of rest to get back to myself again. It was SO worth it!

3/12/11

My spirits are high while my body is doing its best to keep up with my daily desires to accomplish something. We went to see a movie last night. It was entertaining. I guess it ended a bit late because today I needed to take a nap. Grr.

I hope you are all doing well. Send me an e-mail to let me know how you're doing.

Jen

1/6/2011

It is a new year and a new decade. My family and I are doing well. Santa was good to us and "Fred" remains away.

Last month someone asked me what I wanted for Christmas. My mind went blank ... I hadn't even thought about what I wanted for Christmas. I was busy trying to figure out what to give for Christmas. The question of what I wanted for Christmas was stuck in my head for 2 weeks before the big day. I figured out that my struggle selecting gift ideas for myself was caught between what I needed and what I wanted. In the past I would ask for items that would help me with work. Items that would help supplement my "work" uniform. Now that I am not in corporate America, I need less. My new uniform consists of jeans, long sleeve t-shirts, a couple of sweaters, and hats. This has been a huge transition for me. Because none of the items from my newer uniform needed to be replaced. The gifts I did receive were awesome and I have enjoyed them. The best gifts were being able to enjoy the company of friends, Derek, and my animals.


Other than being delighted my tumor has not come back we are enjoying life as much as possible. Over the last couple months our animals entertain us when we are home. We go to the movies and have enjoyed the company of friends often. All of our activities are planned out so that I have the energy to participate. Planning is key since it has allowed me to join a book club and a hiking club in 2010. Which are great because I'm meeting people in settings that are not work related and I am meeting new people, which helps to make me feel less isolated. I continue to volunteer with the same non-profits. The work is the same and the people I volunteer with are amazing.

I am 6 days into this new decade and I can tell it is going to be good. Things are looking up.