Monthly Archives: December 2009

Not Crabby.

2nd cousins

Cousin Alan and his cool wife Lisa came with their girls. Alan’s sister Ginny (Aunt GinGin) and her cool husband, Ron, met up with them. Their plot was to take the kids out of the house for dinner and give us a break. We were having too much fun together that Steve and I both said, no way. The kids played well together and the adults felt lucky. Ginny and I were saying how great it was to be part of this huge family.

Tommy was addicted to Ginny. And I got in a power nap while they were here. But I see Tommy’s tendency not want to miss a minute of life is genetic. I did have a hard time. Even though everyone kept telling me to go nap.

And now I need to rest. Tomorrow Aunt Patricia comes in, have to save up some energy to chat!

I’m Crabby.

I am tired. As most are these days. Day 2 is the most exhaustive after Avastin. In fact, I need to book sleeping the morning away in the future. Then I need to get up and move. That helps the aches go away faster. But sleep, oh sleep.

Babs came today and had time with each kid, even though Paco was a pain today. Sometimes I wonder if he is going through a mean phase because of me, then I talk to a friend who has a kid about the same age, and they have the same challenges. She tells me to put me at ease. I am relieved that I am not uniquely scarring my child.

Tommy has started the army crawl. It is hilarious. Now I really need time to clean up my desk! He is already climbing on us, of sorts.

Tommy’s t-shirt came from Tía Colleen. It does not suit him. His parents and brother today, yes. But Tommy, no.

Not so crabby.

It is 9 PM. The lights are out.

Mom, Me and Tommy

Mom managed to get up at 6AM to come to UCSF with me today. She was on double daughter/grandson duty. We arrived on time, only to wait 50 minutes before I saw the clinical trial nurse, Jane, whom I really like. We just put 2 and 2 together today. Her last name is Rabbit: Haas in English. Mom was confused about the delay in seeing anyone.  At Kaiser, that kind of wait is rare. I think I have waited that long twice this year, oh maybe three times if I include the Paco and Tom’s pediatrician in the mix. Out of how many appointments? A total of over 30, I think.

To be fair, they are a brain tumor institute. It makes me wonder how bad things are around the world. They are probably taking every patient they can manage. Like I said, I have the best of both worlds.

My weight is down, but still not at a risky speed. About a pound a week, which is going to be easier to keep off.  I gave them my list of side effects, yet not really complaining., but the list seems to be growing.: cracks in fingertips, facial acne rash galore, nail peeling and discoloration, ear noise, left side super sensitive, and of course, diarrhea. Dr. Butowski came in, it is the first time I have met him: http://neurosurgery.ucsf.edu/index.php/about_us_faculty_butowski.html. He was dressed very metro sexual today. I would try to set him up with Colleen, but then my mom pointed out that he was about a decade younger. True, he seems about 35.  I had to whisper to my mom, “guapo.” She smiled and said “in a bookish way.” True enough.

So his general idea is that this list of side effects is a combo of radiation and Tarceva.  But he also made it clear that we are on a new frontier. I do like that idea.  All is fine neurologically. So it would seem. When I did mention my memory not being as super efficient as it was, I assumed my brain was aged about 10 years. He thought in about 6 mos, that should come back . Let’s all hope. Mom mentioned her memory is not the steel trap I saw it. Then I quizzed her on cousin birthdays. Yes, she knew right away. My point was made.

From there we headed across the street to the hospital (Uncle Jim, there is valet parking on the clinical side). And I marched in with Tom to no refusal. From there Mary hooked me up in minutes, and believe it or not, I actually took over feeding Tommy from mom with the IV attached! He was working her, and kept trying to steal the spoon from her. He knows better to try that with me. But Mary and crew were lovely as always.

I met two other patients that were women, one in her 60s we guess, one in her 70s. The first I will hopefully start communicated with. I think she is a Giant Cell person as well. Then older one in the infusion area was in love with Tommy. A key reason I bring him. He seems to perk everyone up.

From there, we tried out the cafeteria, busy but decent. Then we headed home. Tom’s eyes closed the minute we started to move. Then I stopped for gas in Richmond. From there, Tom was awake until about Fairfield. Mom was asleep from El Cerrito to Vacaville.

I was ok with that, as she was in charge of Paco the minute we walked in. the door. A few moments, they had a beginning bridge board game set up and had roped Steve in as a 3rd. Steve multi-tasked, helped Tommy with snacks and let me take a power nap.

Every day I say thank you for what I have. I suppose I should be sad more often. No way. Too many smiles and too much good fortune to let it get to me again.

Blood Tests Back Already

Late, Sat. Dec. 26th

White Cells and Platelets up!

We waited there today, but it took them less than 12 hrs to process. On a Saturday night.

Boxing Day

As far as I remember, today is Boxing Day where servants and masters switch roles. Not so much here. The boys slept a bit late and Steve took first shift (he usually does, then I get up and make him coffee). Poor Steve, the Avastin is causing extra bleeding these days. Last night, I slept with a hat on my head (as usual in the cold) and when Steve checked on me, the hat was over my eyes and my mouth was open, with dried blood around my nose and upper lip. Poor Steve had to wake me up to make sure I was alive! ++My mouth was open due to the stuffed up nose, the nose stuffed due to the combo of Tarceva (which kicks up sinus issues) and the nose is filled with blood due to the Avastin. Such a great combo. Bad days I call Chagall days. The inside of my nose feels like glass and I think of the window in Chicago. But the inside of my nose is red. ++

Steve ran our old car seat to Beckett in Sac, while I dragged the boys to Vacaville to get my weekly blood draw. Paco was amazing, the wait was long and Paco sweetly played chess on my iPhone for 90 minutes. He also fed Tommy a snack and did not complain one bit. Waiting for blood work to be done, was another cancer patient with stage 4 esophageal cancer. The wife was strong and tired. Her brother’s wife was with them, and their 9-ish year old daughter. The wife was clear his end was getting near, and the cancer was resistant to chemo now. It had likely spread to his lungs and he could not breathe while horizontal. The daughter and Paco played for a while and they just seemed like a solid family. I admired all of their strength. I was so upbeat and worried I was too happy for them and their situation. But the sister-in-law said that I had lifted them. I had lifted them. Seeing them together reminded me I had that family tightness as well. And I held Paco so tight. And then took him to See’s and McDonalds. Yea, a bit of spoiling today. I wish I could thank this man who is facing death and tell him thank you for reminding me. It is so easy to forget from minute to minute what we have. Then I remember. And I kiss those boys. All three.

Steve got home from the seat delivery. Lisa is still confused why we are giving her our car seat that goes up to 32lbs. I pulled Tom out of that seat a while ago. He just does not like sleeping in the car and rarely transfers successfully. He seems to sleep better in the regular convertible car seat. Paco slept in the child carrier and still, at 5, sleeps as well as Tommy. Beckett is a great car seat sleeper and is growing like a weed. Hence the good hand-me-down. Someone needs to get good use out of the 32lb carrier!

Mom showed up shortly after we all got home. And for a bit Steve and Paco tossed the football around (Babs even caught a pass) and then Babs and Paco played bridge for beginners for quite some time. After a bit, my cousin Dave (#1) arrived with his 3 beautiful kids in tow. They put up with my lecture on traveling abroad and learning more Spanish quite well. Paco and Cecelia bonded. 2nd cousins age 5 and a patient 15-year old.

When they left, I just felt so fortunate to have family like them. Again, as always, I think my job is to be the perky one in the clinic waiting area or the infusion area or wherever. My life is good. These boys are full of love and kisses.  As Ginny Johnson says, they are gifts.  And so is Babs. She said she felt she had not done anything. She has no idea how happy she makes Paco. They are bridge buddies. It reminded me of myself at about 7 or 8, playing Gin with my grandmother in Fort Bragg. And she was about the same age my mom is now. Bombi, Babs’s mother-in-law, lived to 100. I hope my mom copies that lifespan.

A Happy Christmas

I was exhausted and worn out last night. I was almost not going to even bother going to mass until early morning, the entire week had caught up with me. Then I was lying there, sad, exhausted and remembered that Christmas is not about being miserable about my face, or letting everything catch up to me. The key to beating the cells away has to be to keep one’s faith in whatever lifts one’s spirits. So I rushed up, spackled my face (as Steve and I like to say) and made it to mass just as it started. Paco wanted to perk me up, so he voluntarily came. He was my angel.

During mass, I saw a woman in her late 60s behind with a scarf on her head. I pointed to our heads and she nodded. I said, “we’re surviving” and her eyes filled with tears. I gave her a hug and said, “here is some of my energy, I steal mine from my son.” Then Paco filled me up with love, making life so much better.

From there, we went to Lisa and Brandon’s for the annual White Elephant event. It cracks me up every year. Paco wisely stole a box of candy, and was happy to have it stolen, so that he could then steal a Mr. Santa Potato Head. Wheeler was also crafty in his approach. The special master was Patty, Lisa’s aunt, who saw that Paco wanted the Potato Head, so she stole the candy from Paco, so he could steal Santa Potato Head. Love moms that keep an eye on the entire room.

This morning, Paco was up at 7:15 and overjoyed with his stocking. From there, we scooped up Wheels to maximize cousin time. Then at mom’s we all gathered, opened stockings and just enjoyed the time. The cousin boys were all together. The bright boys, full of love and happiness.  All 4 were sweet and beautiful.

I am exhausted, and had some dietary issues this morning. But I took the power-Anti-diarrheal meds to get through the day. I will be paying for that tomorrow. So worth it.

Family and Tradition. Definitely have their place in life. In my case, a powerful, strong and uplifting place.

The Ball Extravaganza

No, TomZ, we really do try every year to fill a room with beach balls. Year one, was Paco’s 2nd Christmas. The child was obsessed with balls. We played Susy Dorn’s song, “Pelotas” repeatedly in the house. So we bought 60 beach balls to fill a room. 60 is not enough.  One year Colleen hosted and Shannon is now stuck with the task: on her birthday. I love celebrating her birthday. Having a break of Christmas activity to celebrate someone’s birthday, well, that is a good reminder of how rich life is. The kids just go to town, and we can let them be.

I was up late wrapping last night. Despite low sleep, early riser Tommy and a day of social engagement, I did not nap! Now I have more wrapping to do, but it will keep. First, the sandman calls my name.

Just in case, Merry Christmas.

I Love It When a Plan Comes Together

Tuesday, Dec. 22, 2009

Geraldine’s plan. For those of you don’t know, 15 years ago, I was her assistant in London. Our Director was a challenging alcoholic with questionable morality. Geraldine is ethical and solid. For 15 years our friendship has just continued to grow. In 2003, she married Michael, a wonderful man, and their wedding was a glorious celebration. Geraldine came to mine, and I made it to hers in England. Spending time together goes fast. Paco loves Michael and Steve and Michael talk cars for hours.

Geraldine’s brother, a fantastic survivor of cancer, lives in LA. So she and Michael just flew up from LA for a few hours. They were concerned about wearing me out but did not want to miss the chance. Originally, we were supposed to go to the UK for a party in January, but between the economy, the treatments and forgetting to get Tom a passport (oh my goodness) the trip is off. So they came to us. It was a brief but wonderful visit. We had lunch in Old Sac and the boys went to the car museum while Geraldine and I chatted. I was overjoyed when Colleen and Babs dropped by to see them. I think it put Geraldine at ease to see what I had at fingertips. Mom and Colleen came independently, on about 2 hours notice. I just felt blessed and luckier than ever. Tom won Geraldine and Michael’s hearts as soon as they saw him scream, then conquer hunger by eating bread. And Paco has known them since October 2005. And we see them at least once a year.

I have sleep to catch and gifts to wrap. Also, tonight I am on alone baby duty for the first time since the surgery. Steve and Paco went to Shannon’s for the night. It is our annual tradition; we fill a room with beach balls, usually on Shannon’s birthday. The kids are happy and the moms sip champagne. And we eat cake.

I don’t know why I don’t have much fear of the future. I know it won’t be easy, but I seem to get verification of a good life every day. Good Husband, Good Family (thanks for the email Kitty!), Good Friends. Better get Tommy that passport. I can travel in Western Europe for 10 day trips. Just enough time to see friends in the UK, and cousins in Cork. That will be my next international trip, I dream of it.

Lack of Posting, Due to Happy Times

The Lack of Posting was mostly due to positive activity that led to desperation for sleep!

Friday was Paco’s concert at school. They sang a multitude of songs in Spanish. One for Chanukah, one for Kwanzaa and one for Christmas. There was also one about autumn where Paco got to play the wind, el viento. I actually rallied and made the cookies. Tommy was great, he barely squawked and was mesmerized by the kindergarten concert. So were we.

From there, I took Tom home and we passed out cold. I was supposed to pack and go to bed early, but instead, Paco and I watched the Santa Clause and the Santa Clause 2 in my bed. And had a good snuggling time.

Early Friday, I had received an email from a fellow GBM: clinical trial chica. We can call her TJ (she said I could use her name, but tonight I am feeling sensitive).  I get compliments on how I am doing in general. I am a walking miracle. My surgery was clean and lovely. TJ’s tumor is considered inoperable. TJ was diagnosed about a ten days before I was. She has a 13 month-old boy and is knocking on 43. The trial that we are both on and her radiation have actually shrunk her tumor. She is full of life, optimism, and spirit. We have barely exchanged emails (both of us, small kids, Christmas coming, no surprise!) and I feel like we could sit and chat for hours. When she wrote to me that her last REI showed the tumor was smaller, I was snuggling Paco and I started crying, full of hope. I am happy for her, but overjoyed for myself too. This chemo is challenging (though easy compared to other cancer treatments) but it is hope. We live on a bell curve, and I change the average lifespan statistically. With my surgery, pathology and age, I have a better chance than most. TJ would, in theory, be at the negative end of the bell curve. She won’t have it. She is blazing a path for me. For all of us.

Saturday a rich tradition was continued and slightly augmented.  I have 6 close friends who have been hanging out together for a long time. Every December we have a shopping in the City trip…just to be together and shop kid-free. This year, one could not make it, but 4 of us stayed overnight, providing a nice spot for rest. We try to shop a bit for Christmas, but also for ourselves. It is easy and fast to shop without kids!

Anissa and Shan always get chair massages at Origins. Amanda & I always get our brows waxed at Benefit. The master waxer, Edna, was the best I have ever had. No pain. She freaked out a bit (I warned her) about my rash and it will flare up and look horrible. Then she skillfully covered it up with make up (which Amanda then purchased for me as the Christmas gift).

The rash is worsening at the moment. I thought I hit the worst phase, Steve thinks August was worse. But he sees past it, so even when I feel ugly, he helps me forget it. I have been taking high doses of Anti-diarrhea medicine, so that I can actually walk without needing to know where the bathrooms are. But I gave my system a break today. Not surprisingly, I was not uncomfortable, but I did spend a lot of time in the bathroom today.

Tomorrow will be a great day. My good friend, Geraldine and her husband (who has become Steve’s good friend) Michael are flying up from LA for 4 hours. Just to see us. Geraldine’s brother lives in LA, but they live in England. Geraldine was my boss when I lived there (1994), and we have been friends ever since. We made it to each other’s weddings (Steve and I even crashed their honeymoon by accident). Paco adores Michael, Michael let Paco steer a 56 Bentley in his parking area, while sitting on Michael’s lap. It will be a good day. Though I might take more anti-diarrheal to give myself some more freedom!

All is Good

Just a quick note. More later. Concert Friday at P’s school, Girls Out Saturday. Pizza face, but a warm environment. More to come.

Follow

Get every new post delivered to your Inbox.

Join 59 other followers