Happy Unbirthday!  Zachary still remembers my 2001 birthday when I said I wanted to have more fun at my birthdays.  That year, the kids got me a very big squirt gun and silly string.  When I opened the squirt gun I said, “You guys are in trouble now.”  They said, “Oh yeah!”  Then they went into the other room and got their already filled squirt guns and soaked me!  This is a fond memory for all of us.  Zachary talks about it often.  So yesterday we had an “unbirthday” party just for fun, to eat cake and to spray silly string.

The kids are starting art therapy with a therapist from Hospice.  This is a gentle way for them to explore our very stressful life. 

Two weeks ago Hana came home from school, hugged me tight and said, “We saw a movie where a person had a brain tumor surgery and it was a life or death situation.  He could have lost the movement of his whole right side.”  I asked her, “Was he awake?” “Yes,” she said, “he was awake.” 

“My surgeries were a lot like that,” I said.

That evening a friend called and said that PBS was going to broadcast a segment about a person who was going to have a brain tumor surgery and that we might want to watch it.

So we did.  It turned out to be the same movie Hana had seen.  It was good to see what she had seen.  Zachary really didn’t want to watch, but, as fate would have it, his health teacher taped it and showed it the next day.

Hana is still enjoying her piano lessons and crocheting scarves.  I think she is feeling comfortable in the 4^th grade now.  While I grow wider, Zachary is continuing to grow taller and bigger.  When he went shopping for shoes last week, he had to trade up from size 9 to 11.  Indoor soccer started last week and last night I just showed him how to download music off the internet.  He’ll be 14 in four weeks.

My News

When I went to Cleveland Clinic in January, they did not see any change in my MRI films which is great news.  After many calls to my new insurance provider, YSI and my new insurance broker, (“We have never heard of you.  You are not in our system.  You have the option of paying for the drug outright ($3200)”) I finally started my next round of chemotherapy on the 8^th of January.

This was my 5^th round of chemotherapy.  I’ll start the 6^th round on Friday.  I thought we were only going to do 6 rounds.  However, they told us during this last visit that they may want to do more; that some people are on it for a year or longer.  The choices are to stay on chemotherapy since it is working (no growth) and the side effects are minimal, or I “cry uncle” because I don’t want to take it anymore or something changes (re-growth or unacceptable drug side effects).

Steroid blues

Through the month of December, I tapered from 9 milligrams to 5 milligrams of decadron per day.  As I wrote before, this has been a difficult transition.  It left me with some neurological symptoms and most recently, pressure headaches.  At least I think the steroids (withdrawal) are to blame for these symptoms.  They are also wreaking havoc on my physique.  I have gained 30 pounds in 6 months.  I’m getting stretch marks on my abdomen, for example.  My face is just starting to resemble a blowfish, but not quite.  I’m pretty sure I’m not pregnant.  Everyone told me that after being on steroids for a long time, tapering off the last 4 or 5 milligrams is the hardest.  This week, the headaches have increased in frequency and duration.  The CCF suggested increasing the decadron back to 8 milligrams per day to try to reduce the headaches.  Now I am a little more philosophical, reminding myself that I need to respect my process and not impose my will.  I am still trying to find that balance.

When I saw Rabbi David Burstein on Saturday, he said “Embrace your stretch marks.  Better to be too big than too thin.”  We had a very special Shabbat service with drumming and singing together.

Kate has gotten ill and won’t be working for us for about a month or so.  This is stressful because she has helped bring a lot of stability to the whole family.  Of course I understand the need for her to take care of herself first.

Stress 

Speaking of stress…I have a list that goes on and on…

• I promised my aunt I would call her friend that knows a lot about the macrobiotic diet a year ago – still have not it.
• I want to call Mark, my high school friend that turned 40 two weeks ago.
• I need to work on the taxes – though we did get help with the taxes for the people we hired.
• My grandfather wants me to sell some things on eBay (he asked first).
• Kate needs time off.
• February 12 is my last official day as an YSI employee – so I need to do the exit stuff, get my personal belongs, etc.
• I’m obsessed with my weight and not being able to do anything about it yet.
• Abi is going to NYC this weekend with her friends (Abi says “yahoooooo!”)
• So far we do not have a plan to cover Kate’s time off.  Dawnel will still come Tuesdays.
• Long-term financial planning now that we’ll get my retirement money.

Last time I talked to Mark Renneker, he suggested I maybe depressed and suggested some meds.  I do not want more meds!  But I do accept that I need to find a way out of my current ‘rut.’

Refocus

Abi and I have talked about refocusing my energy from my medical things to things that bring me joy.  I’ve enjoyed making two DVDs from old family tapes this last month. The tapes are from a trip we did in 1991 to NYC.  I interviewed relatives, some of whom are dead now, so preserving their memory is very meaningful.  I’m still enjoying my ‘new’ camera.  With the kids help – we’ve taken more than 1000 pictures in 4 months!  I’ve contacted Hana’s teacher about teaching photography there, but Chris has been too busy to find a time so far.

The Antioch Gym – I’ve joined the gym.  It is a great resource!  $30 for 5 months.  Getting there is my only hurdle.  But we’ve had a lot of ice the past two weeks, so some indoor place for exercise.

I’ve been very grateful to Sterling who has called me up and said – “I have Sunday morning free, do you want to do something?”  As he said, since marriage, it’s harder to put “your friends at the top of one’s priority list” – but it is nice to make that connection.

Be well!

With Love, Kindness, Blessings, and some Understanding,