Just when I was sure that all my video tapes of the family for the past nine years had been taken to the dump, Abi found them in the garage.  When I first lost them, six weeks ago, I told Kate, our new care giver, that losing the tapes was an exercise in letting go.  It wasn’t until I was sure that they were gone that we found them.  Now I have 20 family tapes that I will edit down to something that will be watchable.  

Private vs. Public 

I like to share but not every one does so I started to explore why.  For example, I see this as a public journal and very important to both my healing and my sanity.  But, even within that sharing I still keep some things private.  Let me give you an example.  Someone asked me if I ever get angry at my cancer.  I’ve hinted at several aspects of getting angry, but never addressed that question directly.  And then 2 weeks ago I started thinking about being angry at the cancer itself.  I was trying to do some computer work at the time, but kept getting distracted by the question.  So, when I was alone, I lay down and screamed, “I am sick and tired of taking all this medicine.  If you’re going to kill me, just do it now.”  I hit pillows with both my arms, but that wasn’t very satisfying because my left arm was not very coordinated or strong so I just used my right arm and hit a pillow repeatedly and screamed some more, “I feel like you’re pulling a hair from my body one piece at a time and it hurts.”  I screamed again “stop it.”  After a couple of minutes the energy of this anger subsided and I laid there and rested for a little while. 

So that is the private part of my life that I usually do not share in my journals.  I usually do not share this because I think of my journal as a “health up date” rather then a “personal journal.”

Abi and I also talked about how public I am about being sick and how other are not.  It took me several conversations to understand why people are private about being ill.  I had a friend at YSI who went on disability for 3 months and I did not hear any news until I found out that he died of cancer.  I didn’t even know he had cancer.  I learned that in the past it was common to keep illness a secret.  I’ve also learned that there are “acceptable” illnesses and “unacceptable” illnesses based on other people’s perception of a person’s participation in getting or contracting the illness.  For example if he or she gets lung cancer and has been smoking for 20 years that person is likely to get less sympathy.  If that person is homosexual and gets HIV he or she is also probably going to get less sympathy.  But, if she gets get breast cancer or a brain tumor no one sees a direct link between his or her actions and the cancer situation.  It’s OK to talk about it.  And so, there’s no judgment from others. 

The “absence of judgment” and my willingness to share has gives me the freedom with others and get support where others might be more hesitant to talk about their situation.  I’ve gotten feedback that my readers get something for themselves from my journaling as well. 

Ongoing Pursuit of Fun Things to Do

After a lot of angst about money, I chose to give myself permission to buy a digital camera.  I already have a good film camera, but it has film in it from July and I’ve never found a good way to convert it to a digital image in a timely way.  And, since money is always tight and I have a lot of hang-ups around money, it was a difficult choice to buy a very expensive digital camera.  So much of my life right now is focused on “getting well” that giving myself permission to do something fun I think is very important.  I have yet to give myself guilt-free permission for the choice that I made.  I got my camera the day before Halloween and I took all kinds of pictures Halloween night. See http://oct31.katzstein.com.

Making this choice has reminded me that I need to continue to pursue more fun things as noted in the last update.      

Family News

The transition to my new care giver has been very smooth and very important.  For example, she can type.  She has a relationship with every member of the family, Hana, Zachary, Abi and Shayna that makes the home go smoothly.  She keeps the house organized, which reduces the stress on everyone, and she’s cooked every night so we’ve had more family meals in the last month than we’ve had in the last year.  Having her as a “member of the family” rather than as a “helper” has been extremely important.  Since she’s typing this she’s getting red in the face. 

This is from me Kate:   Dan’s glowing report is very affirming for me.  However, I want you all to know that this situation works both ways.  This is extremely meaningful and important work to me.  Dan and his family have honored me by letting me in on this very personal and important journey and I am grateful for this opportunity.  I am thrilled to have work that is much more than a job.

Dawnelle is also helping one day a week and works at the library the rest of the week.  She’s a terrific back-up person and a dog lover as well and, we’re just getting started in incorporating her into our new routine. 

Abi graduates from medical school in June.  Just two more quarters to go.  Zachary is in the 8^th grade.  He just finished soccer and has started basket ball.  Hana is in the 4^th grade at the Antioch School and is playing piano, loving art and “thinking about making string art for the blind when she grows up.”

Medical Update

We went to Cleveland November 3^rd and they confirmed that my MRI scans hadn’t changed since August.  This is great news, and it means that the tumor has not grown.  So, I did my 3^rd of 6 rounds of chemo last week.  They increased the dose by one pill, but even still, this was probably the easiest round so far.  My improved environment has helped me cope with the chemotherapy tremendously.  I took thrush medicine so that I was sure I wouldn’t get a yeast infection while taking the chemo. 

I am now up to 190 lbs. and now that this round of chemo is finished I am back to decreasing my steroids.  I’m also going to follow with on the nutritionist that I mentioned in the last up date.

With love, peace and understanding,