Date sent: Thu 2/26/2004 12:56 PM
Dive Dive!

Now I know I’m pregnant. My mood swings are quite strong, and my stretch marks are coming to get me.

This morning when I was waking up, I realized that yesterday was the 9th  anniversary of my first seizure that started this journey.  I’ve always triumphed in life by “figuring things out.” That’s why I like technology so much.  There is always a new problem to solve and often if I take enough time or talk to enough people - I can figure it out. But I realized today that I am very distressed that cancer is different. There are many theories and I have perused many ideas, but I still cannot “figure it out.” And I’m getting discouraged; I feel like my time is running out.

Since January my ability to walk without being effected by a mini-seizure has gone from a ¼ mile per walk to 2 blocks per walk. At the beginning of February, I started to have extreme headaches on a scale of 1 to 10, they were a 7. As mentioned in my previous update I started taking more steroids which only helped a little. I did my normal round of Chemo in the middle of February which was uneventful. The chemotherapy seemed to have some effect on my headaches.

On Monday I had a simple seizure in the back of my neck and the doctors recommended increasing my Zonegran by one pill. The increase has relieved all the twitching that I had previously experienced and most of the headaches as well.  It has also left me quite drowsy. Therefore, I don’t feel much like walking.

I have a follow-up MRI and visit with the Cleveland clinic in 2 weeks. I still don’t know what is going on. I don’t know if I’m growing something or if this is further damage from previous treatments, but I doubt they’re going to say anything about a child.

A friend asked me yesterday if I was depressed. I said “Yes, especially these last two weeks.” She asked me if I was doing anything about that. I mentioned that I am trying to focus on things that are more interesting than my health but that I’ve d had difficulty these last two weeks because it has been right in my face.

I talked to Zachary about his interests and a little bit about this dilemma.  He suggested that I take up something completely different than I had in the past.

He said “you could fence from a wheelchair.”

I said “Well, you know, I’m doing video and photography.

“Yeah, but you’ve been doing those for years.”

“Maybe I could do it without the wheelchair,” I suggested.  His only concern was that I might be pushed over by my opponent.

“I guess I would need a gentle opponent then.”

My friend also asked me, “Is there anything you have always wanted to do and have just never done?” Whenever anyone asks me that question, I always draw a complete blank. Though learning to drum better comes to mind now.

One thing that’s difficult now is I live in a house that’s teeming with life. Zachary will be fourteen on Friday. Hana is nine and very energetic. Shayna, our dog, is 8 months old and lives in the kitchen and also has a lot of energy. Abi, works all day long, and that takes a lot of energy too. I however, am drugged to the hilt and feel lethargic most of the time. I want to participate at the energy level as the rest of my family but can’t.

After 3 weeks of coordinating volunteers, we finally found someone, Julia, to be a more permanent caregiver to help me day to day. This is starting to help me have a more regular routine and not wonder what I am going to do, who’s going to help me in the next day, and do cleaning, laundry, etc. 

Video might be old hat, but I created a video from the un-birthday party mentioned in the last update. This was a fun project. This time I created both a Mac compatible version (QuickTime) and Windows compatible version. Zachary is taking a media arts class in school and that plus my project inspired him to create his own music video using Movie Maker that comes with Windows - linked here Mac (Quick Time), Windows.

Zachary will be 14 tomorrow, Abi graduates from medical school the first week in June, we plan to go to Disney over Spring Break and Europe just after graduation, so this is a big year.  

I mentioned in the last update that I had shown Zachary how to share files on the internet. He did that for a week or so, but then said that his conscience had gotten the better of him, and asked me to take the program off of his computer. I was surprised but interested because it’s just a different culture than I was raised in. I was proud of him for making his own choice.

Separating From YSI

Last Tuesday I went to YSI and signed the official papers stating that I am terminated as an employee of YSI. It was simple, clean, and sterile. It had a much bigger impact on me than I thought it would. I never thought that I would go back to work for YSI but somehow this act made it official. Suddenly I feet more distant from the company and the people that I worked with even thought it was only one day later. It’s closing a chapter in my life. I am retired from YSI. When a friend heard that I was going to YSI, he joked, “Oh, are you going to apply for a job?” 

Now that I am on SSDI, I am officially a retired person.  I am also the “disabled person,” which had several “advantages.”  For example, the tax penalty for early withdrawal of my retirement is waved.  I’ll continue to get LTD payments and life insurance from YSI Insurance for the next 25 years.  Etc.

It’s the end of February, I continue to swim, hold my breath, and pray, trying to figure things out. Maybe March will bring a fresh breath of air.

I think that’s it for now.

With Love, Kindness, Understanding and Hope,

Dan
http://katzstein.com

http://life.katzstein.com

 

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