Wednesday, March 11, 2009

Maybe Only One More Chemo!!

Sorry I'm writing so much but it's got to be the decadron. Even though I took a half of a Valium last night, I woke up at 2am with a racing brain and couldn't get back to sleep no matter what I did until 5:30, only to wake up again at 7 to get ready to go to chemo at 9. So I'm weary, but still wanting to write. That was the one thing that I found when I took Zoloft after a miscarriage 20 years ago - my desire to write came back! That maybe also what happened to me with this carepages since I started taking Celexa right before being diagnosed and then upped it once I landed in the hospital... So for those of you who struggle in life or have to go through cancer treatment, just remember my may not be that I am such a fabulous person that can be so up during such a trying time. It could be that I made the right decision to lessen my struggle through the use of mood-supporting chemicals. Getting the support we need is nothing to feel ashamed of.

I told my oncologist about the depression that came on and lasted for around a week and a half the last time I did this chemo and he said it's quite common. And that it's probably from the decadron! That makes lots of sense because it takes you way up and then you stop it suddenly after 3 days.

I asked if I could taper off more slowly this time - if that would help. He told me to cut it in half and only take 4mg twice a day instead of 8mg twice a day. I will also cut it in half again on the 4th day just to taper myself off slower.

Best thing he told me today was in response to my fretting to him about getting done with all my treatment in order get to Hawaii by August 5th. First he said that there are usually no complications with surgery to prevent you from going to radiation on time. The only complication he's seen is from mastitis after a partial mastectomy so that won't be me since I won't have breast tissue left. And then what he told me next was magic to my ears! He said that originally he was thinking he would just have me do 3 rounds of the Taxatere anyway since I had one round of the Taxol already in the blaat that sent me to the hospital. So it's possible that he would still think that's ok, considering how great the response has been. And what all that means is that next time would be my LAST ROUND OF CHEMO!!!

I talked with my sister in support from WomenCare last night and she so understood how I felt without the wig. She also felt like she had a level of privacy taken away from her whenever she walked around with a scarf or hat or bald. It's like you no longer have the choice about revealing something that you would normally want to have a choice about. That's exactly how I felt. I could reveal it if I wanted to and not if I didn't.

She also said that she made a bargain with herself to give herself a present once her chemo was over. That kept her going (and she had it much rougher than I did).
So she kept reminding herself when it was hard that she was going to give herself a new set of skis once chemo was over.

So that put a bug in my brain... What would I want to give myself? Of course there's the Hawaii trip but I really feel like that's more for the rest of the family than for me. I should think of something just for me. My thoughts are to wait until after the whole shabang of treatment is over or to at least wait until surgery is over. Some thoughts I have: 1. finally enclosing that huge balcony you see behind me in my long, dark hair photo of myself, sitting at my desk with my laptop. I want to turn that balcony into an office and not have to be sitting at my desk next to the radiating TV and cluttering up my bedroom and so I can have a bookcase and maybe even a bed so people can stay in Geoff's office when they come visit and if I can't sleep, I can go into that bed right off our bedroom instead of down the hall. I also have a stationary bicycle out there that I never ride but might if the place was my retreat and enclosed. It gets cold out there so I'm thinking of extending the heating vent to reach there - shouldn't be too hard - plus my dear friend Doug next door is a contractor and has lots of windows in stock and a huge glass door he was going to take out to the dump and instead I had him put it in my garage. So obviously I've been thinking about this forever but have a hard time moving forward with anything without Geoff's support - something I have GOT to get over since he drags his feet on so many things that have to do with money expenditure but I've now got my very OWN money - harrah! 2. go on a retreat with a friend to a spa type place that also includes psychological or spiritual/Jewish classes. 3. rip out all the carpeting upstairs and replace it with wood. 4. drive myself to Henry Cowell every day (this I could do in any case). 5. Have a party with all my friends - I turn 50 May 25th - possibly after the surgery (this I could do in any case). 6. go away with all of my friends or with just my parents and Jason, Aimee, and Geoff to Carmel or somewhere.

If you have any other suggestions of things that would seem like a great gift idea to myself for the end of chemo and surgery, send them my way!

Tuesday, March 10, 2009

Yay! It's Purim!

Sorry this is so long...I'm excited today. Maybe it's the decadron that I have to start taking today to prevent allergic problems from the chemo tomorrow...

I went to the Hadassah luncheon today wearing my short, blond wig and make-up. I couldn't believe the difference I felt between how I felt today vs when I went to the women's program with Chabad and wore a scarf. I felt so comfortable with a wig on - like I didn't want to hide. The scarf over the bald head makes me feel like I'm advertising that I'm going through chemo. This wig is more comfortable than my other one because it is short and they gave me something to wear under it to prevent itching. It's also fun and funny. My friends and family get a big smile on their faces when they see me in it. Jason though, seems to have a hard time with so many changes and said he likes the hats I wonder whether it would be hard also for my clients to see me in it... (Hey, therapist friends, you can give me input privately here or through my email address if you have 2 cents).

I was exhausted when I got home around 3:30pm after leaving the house at 8:30am for the port draw and then over to acupuncture for the treatment prior to tomorrow's chemo and then to Lee's to pick her up and then to someone else who needed a ride and then over to Aptos for the luncheon and back. But even though I was tired, I had to go over to Bailly's to say "Hi" and "Happy Purim" and show her the wig on before going home. She was so happy to see it in person. I won't be able to attend her Purim party today with all the kids/germs there.

The rabbi read me the (whole) megillah which he read very quickly in Hebrew (took 20 minutes) while I read the story to myself in English. It's a mitzvah to hear it read and to give Tzedakah and to give shalach munis or manot (gifts of food to friends). I was very grateful that Bailly also hadn't heard the megillah read yet either because I probably wouldn't have let him read it only to me (do I really merit having a special private reading?) Plus, I would never have remembered to read it this year on my own since, well, you know, my mind is on other things...and I really feel badly that I've missed a lot of the holidays this year and may be recovering from my last chemo come Passover.

Normally, Aimee and I would be making gift bags of food today and delivering them to friends. We had all these Jewish calendars that I'd saved with beautiful artwork on them. Aimee would cut out the artwork and glue them to the gift bags. It was fun. I also make kreplach (yum - Jewish potstickers) in honor of the secret that was kept hidden and then revealed. There were many secrets that were revealed through the Purim event and the most well known secret was Esther's true identity - it was kept secret from her husband, the king, until the final moment when she revealed herself (at the risk of death) to save her people. It's a wonderful holiday and a perfect story for empowering girls.

After reading the megillat Esther, I was struck by the fact of how symbolic and poignant it is that I'm wearing a short, blond wig today when I am normally a person who wears dark, long hair. The Purim story is so about the miracle of how everything was turned upside down and the very person (Haman) who was poised to kill all the Jews ended up hung on the gallows he built for Esther's uncle/husband, Mordecai, who was led through the city on a horse by Haman to honor him (Haman's idea because he thought the honor was going to be his own).

I was also struck by many other things in the story that I am struck by every year, including Esther's bravery and how powerful the Jewish people can be when they actually come together and how hard it must have been to fast for 3 days. But this time reading a line about Haman struck me differently due to the predicament I'm in this year. He was so happy that he was the right hand man of the king, and so happy that he was invited to a party by Esther where he was the only one invited along with the king. But he couldn't be happy because that darn Mordechai wouldn't bow down to him. So he built a gallows for that darn Mordechai. I thought about how often (in a depression) I have only focused on that one negative thing in life when all else was positive! Depression and negativity could be the death of someone! Building a gallows for that bitterness may get you hung yourself! So how fascinating that I am wearing a short, blond wig today and not my usual long, dark hair - everything is topsy, turvy on Purim.

Anyway Purim's a great holiday for children because there are carnivals and dress up. It's very much celebrated like Halloween in Israel where everyone dresses up but not in ghoulish attire and not to collect candy from others but to give gifts of food to others. The little children tend to want to dress up like Mordecai and Queen Esther, the heroes of the story. Adults dress in silly costumes. (So I feel like I'm dressing up for Purim today with the wig and the make-up!) In fact the day is supposed to be very happy and joyful - and the whole month of Adar is like that (the 12th month on the Jewish calendar) and we increase in joy leading up to the liberation of Passover.

I loved the Hadassah luncheon. Hadassah was Esther's Hebrew name. Here in S.Cruz, the Hadassah chapter created a tradition to have a luncheon on Purim. The speaker was a teacher of mine once at UCSC and he said something today that he called his mantra and it touched me deeply because it was a mirror of my own idea. "You can't say you're an educated person if you don't know anything about Jewish history, culture and experience." I would add, Jewish religion to that mix since it's the foundation of all the other Western religions. Baumgarten, today's speaker, gets 50/50 Jews and non-Jews in his Jewish Study classes up at UCSC. Percentage-wise, UCSC has the most Jews of any UC campus. My question to him was, "How are the Jewish students doing with the anti-Zionist sentiment on campus?" He didn't seem to be worried about resilient students who need to hear this stuff early because they'll hear it later. I didn't agree with that...but that's another megillah.

I was so happy this year when Aimee studied the ancient Hebrews in her sociology class (and aced the test). I always wondered why no one wanted to teach and learn about the ancient Hebrews and in fact why people don't want to teach and learn Hebrew itself so they would know how to read the Good Book and know the religion that was the foundation for the other ones.

Jason's school is the top charter school in the country and they have a large number of Jewish students but they are all big on learning Latin and they also offer Chinese. My thought has always been, "why not Hebrew? Am I the only one who sees it's value?" Is the Latin and Greek culture and the Arthurian legends really so worthwhile to learn about? I know people love mythology...but what did the Roman's do but crucify Jews and others...sorry I'm so on a soapbox today but I've got an audience and of course you can put your 2 cents in here too.

Anyway I was glad to hear something that resonated with me come out of Baumgarten's mouth today. Happy Purim to you all and BTW, I think that it's not out of the blue that the stock market went up today. It's supposed to be a very happy day!

Monday, March 9, 2009

Look Good...Feel Better

Today I went to this monthly class they offer through the Dominican Katz Center - it's called, "Look Good...Feel Better". The American Cancer Society got together with the Personal Care Products Council and the National Cosmetology Association to sponsor a free class for cancer patients where they give away a bag of free make-up and free wigs. They teach you how to put on make-up and how to tie up scarves, etc.

In high school, I experimented with make-up and in college I kinda left it behind. When I flunked my oral exam to become a licensed marriage and family therapist, I went to the exam again the following year with my hair permed and dyed, wearing expensive clothing picked out for me by a personal shopper, including high heels so I could look older and pass the exam. (Of course I also went over at least one vignette a day for an entire year. But I'm sure the whole get-up helped as well.) I got married around that same time and my wedding album is full of photos of me with permed & highlighted hair. Then when I started working as a therapist, I wore make-up, high heels and earrings until my ears couldn't take it anymore and my toes got calloused. When I got my own office and private practice, I got more comfortable and left the make-up, permed hair and highlights behind. From then on, make-up was for special occasions only.

So going in there today was well, out of desperation. My eyebrows have thinned out and all my lower eyelashes are gone. My upper eyelashes are barely still there and of course, my head is bald. My skin on my eyelids sag down to what eyelashes I have left. My skin on my face is pale and blotchy. I just thought I could use a few pointers and if I didn't like the make-up, well, Aimee would love it.

When I got there, I was the only one out of the 5 participants who had no hair. I really felt out of place - like I didn't belong there! I discovered that they just came in after their first chemo - which of course, I couldn't do! It took me a long time to get to this class and my hair came out only 2 weeks after that first tremendous blast of chemo landed me in the hospital for 8 days.

Anyway, they showed us how to put on the make-up and I was afraid to put anything on my eyes because I've been having problems with stuff getting in my eyes. After awhile though, I put some eye pencil on so I could actually look like I had some eyelashes. Then I tried eyebrow pencil and either had the wrong color or I just look like a clown with eyebrow pencil. So I wiped it off.

Luckily, I was the only one without hair because when it came time to try wigs on, I got to be the demonstration! And the person in charge did not know what my real hair color looked like so she picked out this very light brown/blond wig for me and it looked great! Unfortunately, I had to leave early and couldn't find one exactly the same color to take home, but I'll go back there another time and get personal attention.

I did bring one wig home and surprised Aimee and Geoff when I walked in the door with it on. Aimee said, "What happened? Did you grow hair?" I had her take a photo of me to show you all what I looked like with the wig and make-up on. Don't laugh! Or maybe you should. It's definitely funny. Aimee kept saying that I looked like my mom. When Jason came home and got surprised, he said I looked like my mom. Geoff thinks so too. I kept thinking that Grandma Pauline is definitely laughing and happy right now that I have a huge bag of make-up and a blond wig. Maybe I look like her!