Monthly Archives: February 2010

Glorious Day at UCD

Celebrating Paco turning 6 tonight. I am here, waiting for possible drop off kids. I had the plan of my mom putting out snacks while I waited for kids. The plan was altered by Tommy getting pink eye. Now Amanda and Shan are putting out food, juggling their kids while I am here, without kid! Mom and Clark are caring for the goopenator. Sad beeb. Clark at least gets to watch the Olympics.

Tomorrow: Beginning of Celebration

Tomorrow we start a 2-day celebration, well, 6-day celebration of Paco’s birthday. He will be 6, but technically has no birthday this year. My cousins in Denver claim him in the February bunch, but I always think it is March 1st. He is a Leapling. Tried and true.

So tomorrow is the bowling for kids, Monday is the actual day (I believe iHop is involved) and Friday is family celebration day (with all the grandparents). He is full of joy, obsessed with legos, and eats a bell pepper a day.

In Tommy’s world, Paco is a rock star.

Prepped for Run to Costco

Platelets Fine.

Steve is snoring and I cannot sleep. Strange. But he is sleeping and that is a rarity. Finally a moment when he is not worried and can sleep.

This is usually the low platelets week thanks to Temodar. The danger is when it gets below 100 (in my case). Looking just fine.

Component Your Value Standard Range
WBC COUNT 5.4 3.5-12.5 K/uL
RED BLOOD CELLS COUNT 4.30 3.60-5.70 M/uL
HGB 13.4 11.5-15.0 g/dL
HEMATOCRIT 39.5 34.0-46.0 %
MCV 92 80-100 fL
RDW, RBC 13.2 11.9-14.3 %
PLATELETS COUNT 195 140-400 K/uL

This is the White Blood Cell count. Somehow, I don’t understand its meaning. I need to find a novel about it so I can actually read it with focus!

Component Your Value Standard Range
MONOS %, AUTO 8 4-12 %

Two Cathedrals

The title quotes Aaron Sorkin. I am a West Wing fan.

Today my neighbor cancer pal and I took a walk. She had breast cancer over 5 years ago, discovered as Stage 4. I think she was 39. She had a 6-year old and a new husband at the time. She conquered it and it returned. Again, she conquered it (Avastin) and it has just returned again. She had a tumor develop in the back of her head she is mad. She is on steroids; (to help with the swelling) which are making her crazy. I remember that. They made me a lunatic. It was good to talk to someone who is unafraid. She is unafraid of death, unafraid of treatment, unafraid. She is afraid for her daughter, for her husband, not for herself.

What has been taking up a lot of thought all week is being at ease with the concept of death and the celebration of life (I am a big believer in wakes). Steve and I had a great conversation about what to do with the end of life. For us, this works: to have the conversation before it is necessary, before emotion hits.

For example, we talked about our infertility plan before even trying for Paco. We wanted to make the plan before we had to do so. It was not an issue for getting Paco, but the efforts to get Tom were more challenging. I was so glad we knew each other’s limits. It stopped emotion from taking over the situation.  And we got Tom out of the deal. He was the last pass at science. We never were going to do the Hail Mary pass of IVF.  We had agreed not to do so 5 years prior.

If you have issues with death or funerals, etc. skip the rest.

Pre-Paco, we had a plan for what to do in the event of death. The plan was cremation and spreading in Italy. (Monte Bianco, I think was the locale). Steve said he regretted not proposing there. But now, with the kids, it seems too far and too expensive! So I started looking locally. I checked out a cemetery (Steve said that did not surprise him). After talking to my mom, and being inspired by my grandmother. We made an easy decision.

My paternal grandmother, “Bombi” forged a great trail. She was married at 26, had three kids, cremated a husband (who died of brain cancer) in 1978, and two of the kids died before the age of 60. Bombi beat all odds and died at 100 and 9 mos. My mother and she organized Bombi’s body donation to science. She seemed like an extraordinary study: she was a 100-year old who loved bourbon and cigarettes did quite well (I think she stopped smoking at 92, because she had a small stroke and did not want to set her apartment on fire if she dropped a cigarette). So with that inspiration, Steve and I are working on the paperwork for UCD.

My current search is a place of brain donation. Believe it or not, two people emotionally and physically close to me at their time of death, had their brain harvested by UCD before cremation. The first: my father, in 1995, due to the rarity of his neurological disorder. The second is my best friend’s daughter, Elyse. Elyse died in 2005 of pediatric brain cancer at 5.5 weeks in at home her mother’s arms. A physician met them shortly after the end of life and harvested the brain before Elyse was cremated. And then the oncologist wrote a beautiful letter about the generosity that helped cancer research immensely. So now I am on a search for a place for my brain to go.

I had a wonderful chat with one of my specialists who said they were trying to get a brain donation program up and going. I said, work on it, but no hurry, I plan to outlive the MD. Then we joked about being in our 80s and arguing loudly (we’ll be deaf) over what do to with my brain.

Shan used to be a bit ill at ease with my attitude towards funerals. The year we were roommates, I went to 5. Before I was 8, both my mom’s mom and my dad’s dad had died. One had a funeral, one did not. Celebrating the end of life is important. And my mother taught me it was important to attend. Steve seemed confused by the ease at which I would go to one. We started talking about how many I had been to in my youth and he understood (I am sure at least an average of 1 a year) how high the number is. He went to one for my cousin and one for my uncle. He had only been to one before those. And Steve appreciated the celebration and warm goodbye. He appreciated the recognition of warm souls. And he seemed grateful to have married into it.

So for ourselves, Steve and I are going to follow Elyse and Bombi’s path and make a difference in the scientific future. And we will do what some good friends did for Shan and Chris. Some doctor friends, a married couple (Internist and Psychologist) bought them a brick with Elyse’s name on it for Capitol Park here in Sacramento. Shan said it gives her a place to go every year, a place to mark the loss.

Steve and I are teasing each other about the brick. If Steve goes first, it will be at Laguna Seca raceway. If I go first, probably Newman Center in Sacramento. We each have our spiritual cathedrals. Good places for our kids to go. My guess: Tom gets married at Newman Center, Paco at Laguna Seca.

We’re Fine

Just tired and we all seem to have a small cold.

Short Note. All is Well

Well, Tommy is still snotty. Mom and Clark were in charge of Tom, Steve in charge of Paco, Pat in charge of me.

Family is patient.

All is well. I think I have a slight hearing problem, and will get it checked out. They UCSF team seems more worried about the possibility of allergies than I am. That is kind of cool.

Off to sleep. It will be a slow week as we prep for Paco’s 6th birthday (March 1st), the abuelitos to arrive and then Tom turns 1 on March 8th.

Paco lost his 6th tooth and Tom’s 6th is arriving. It goes by fast.

Sick but Happy Kids

They were sick. Yet still smiling and snuggling all day. Steve and I are beat and have long days tomorrow. Tomorrow is a UCSF day. I imagine all is well. Will update tomorrow.

Making A New Friend, Snuggling a Gift.

Liz ( and I have been exchanging e-mails since August. Steve met her at a UCD brain tumor support group. She is cool. Grade 2 that came back fast, (surprisingly not as grade 4). Now she is on Temodar and a ton of seizure meds. She is a happy Kaiser cancer girl and we had lunch for the first time today. She is even more upbeat than I am. It was a gift to me that I got to have lunch (Tommy too) with someone who is more upbeat than I am. She is particularly strong right now as she is off Temodar this cycle because she has to have plain old shoulder surgery. We ended up spending 4 hours together eating, chatting and pushing Tom around the parking lot.

I was coming home and texted Steve and Paco who had secured Paco’s early birthday present, a used bike for less than we had planned. This was awesome. It freed up a bit of our budget, so I dragged poor sleepy and snotty Lemon into blockbuster in Davis. I had already called and talked to the manager. They had one copy of Raiders of the Lost Ark left. Paco has played the Lego game, but never seen the movie. It is one of my favorites and I was delaying due to the violence. I decided to let it go. The thing with cancer…I want to relax some rules or ideals. Totally self-serving I am in this regard. After Tommy went to crib, we snuggled on to the sofa. Paco knew he got to stay up late and watch a movie but we had not discussed what. I said I had one I wanted to check out. He was overjoyed when he saw the opening titles. Suddenly, an hour later, he broke into tears during the film due to something in his eye. With a touch of Benadryl he recovered, and then fell asleep. Then he developed a fever. Poor thing has caught Tommy’s cold and is snuggled next to me now.

I worry all the time about the boys and their health and safety. After seeing Elyse Yatooma die at 5.5 weeks old, I can only envision the pain that the parents went through. I am paranoid, listening to Paco breathe funny (he is fine, just has mucous). I insisted he sleep next to me so I can make sure he is ok at every moment. He has a cold (listen to me get mad at myself). He does not have cancer, CP, MS, or hellish cystic fibrosis.

What it must have been like for Shan’s mom, to watch Shannon lose a daughter. And what it must be like for mine the last year. These moms are exceptional. They know when to be strong, when you need food vs. when you need laundry folded. My mom: I would have never been as functional as she has been for me.

So today, I got a local Glioma Girl to chat with, I had a baby who was a great sport for 4 hours either in a high chair or stroller, a son who is 6 and fell asleep against me and went to me for affection all evening, and a reminder for what I have in my mom.  And Steve. He checks on me when I am sleeping as deeply as Paco is. He wants to make sure I am breathing.

No complaints.

I Finally Let Paco See Raiders of the Lost Ark

Ah. The glories of motherhood.

Results 20 Feb 2010

Bloodwork good. Sleepiness high. Sick baby, snotty but good.

Component Your Value Standard Range
WBC COUNT 5.7 3.5-12.5 K/uL
RED BLOOD CELLS COUNT 4.38 3.60-5.70 M/uL
HGB 13.6 11.5-15.0 g/dL
HEMATOCRIT 40.2 34.0-46.0 %
MCV 92 80-100 fL
RDW, RBC 13.7 11.9-14.3 %
PLATELETS COUNT 291 140-400 K/uL
Component Your Value Standard Range
MONOS %, AUTO 9 4-12 %

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