Ups and Downs

It is late, and I have to sleep. But the e-mails of worry started to arrive. It was a challenging week of Temodar. Not sure why, but this and last week seemed to have stronger side effects. I do have a lot to do the next 9 days.

Good moments and challenging moments. Babysitter Katie (Senior on the verge of being UCD alumni) stepped in this afternoon after I texted her asking for a nap. She took Lemon to the park, and I passed out. She also has a formal tonight, coming in the AM to help out and then to her hometown to help her folks.

I took my last Temodar today, 3.3 days to clear it out and refocus.

Liz, my Glioma buddy, kick it on the walk!

…And Then There Was a Puke.

At 4 AM, I awoke and realized I was nauseous and had forgotten to take Zofran. And the puke began. Due to the Tarceva, my throat is wrecked, but it has already improved in 6 hours. I am tired, but ok. There was blood, but that does not seem rare. In my case, it was likely due to the throat damage and the inside of my nose is covered in it too. The Avastin Effect.

Welcome to the Trial World. Still, other chemos…so much worse.

Need a caffeine IV. That would be soooo great.

Tooting.

Tooting.

Vivian and I shared an incredible bowl of spinach at dinner tonight.  I told Vivian, at the end, that I would have to go. She explained she was ok with it outside.  Good sport, Viv. So when I came home, I was carrying a sleeping Paco to a different bed (he had fallen asleep in mine) and Steve thought Paco was snoring on me really loudly.

Nope, a Spinach toot. Not so much a toot, but a spinach tooting concerto.

This is a Tarceva side effect. Better toot than throw up.  Temodar tonight. So there could be in the future.

Typing One-Handed

Using my left to rub cream into my scab-head. It is already substantially better. More on that later.

Mom folded a ton of laundry, Shan brought her kids over and took all 4 to the park. Oh My. How she did that, I do not know. Steve got home at a reasonable hour, so dinner was relatively fun. But I must finish dishes and sleep.

From Scabs to Smiles

I dragged the boys to Kaiser today because I forgot to do my blood draw yesterday. Paco was extra well-behaved. Not sure why. He was shocked when I made brownies (a mix, yes).

My complaint/side effect of the day is a head o scabs. Steve was fascinated when I made him feel my scalp. I googled it, and there were lung cancer Tarceva users who had the same challenge. But for me, I pulled out the European super itch cream (that had been hand imported by the friend of a friend (who is now stuck with me)) and rubbed it where there were scabs. I cannot tell if it is pimples/acne, or just a rash.  The cream is a cool hair gel, it has actually worked like magic on my skin cracking, I keep playing with my hair and getting the cream on my fingers. This seems to be something good.

So if you read the comment from yesterday’s post…My world has expanded in a kind and wonderful way. Spanish has been a passion for about 4 years. It stopped me from being bored at home with a 2 year old. And it is fascinating to see the difference visiting a country without the language, and then with a bit of it, then a bit more, then a bit more.

I don’t even know what to say about the kindness of the authoress who posted a comment. I was at McDonalds with the kids today and got the email update on the blog. Paco wanted to know why I was sad. I said, I am not sad, overwhelmed in a good way. I read him the note and told him which books of hers we had. And his eyes filled as well. He gets it.

The magic of words.

Old Friends, New Friends.

Since being in contact with my good friend from High School, I have regained contact with 2 others. Good friends. Junior and Senior year, I was a basket case. I don’t know who knew, only a few. But I really think I shut down immensely. These three that I have been talking to are good friends. Friends from 13-14 when the world started to widen. The friends that I could trust. Still can, that is the phenomal  gift of modern technology: renewing contact with phenomenal friends.

Paco had a game tonight. He was so fun to watch. But I have to admit, Lemon watched and I chatted. New friends. New place. I have never been this comfortable, this fast, during a challenging time.

A bit of advice for the economy of this time. Express appreciation as much as you can to whomever you see. I have been pretty expressive (shocker) especially since last year. I dislike listening to people complain if they have a place to sleep and a hand to hold and food for the table. So after I wrote the posting about Si tienes un papá mago, I decided to track down the author and wrote her. She wrote back in 24 hours. I wrote 2 lines of appreciation. And she wrote me a page. To me, give a little, and people are, in general, generous of heart.

Should Have Posted This Sunday

But I was delayed by other things. I am going through the photos and just loving my kids. I wonder if GBMers make it longer if they have kids who smile often.

Grandparents. Baseball.

TomZ, to clarify: Apologies for the mislead! A neighbor gave Paco this hit away and tied it around the basketball post. I just did not get a good photo of it!

Sleepy and Happy.

I need to go to sleep, clean the house, do something. But first…

Cindy came and stole Lemon to run errands with. He was overjoyed to go in the car and collect some smart, attractive blue-eyed girls. Amanda arrived early today to help me get some crap stuff in order. It was a productive day.

The best part of the day was, of course, the boys. We are trying to get Lemon used to sharing a room with Paco. So Paco and I sneaked in after Lemon fell asleep. A few minutes later, Lemon woke up and actually wanted to snuggle us. For 15 minutes, we all wanted to try. But Lemon is not there yet and kept trying to caress Paco rather aggressively. Paco put up with so much tapping and grabbing and tried so hard to calm Lemon down. Finally, I had to call it. Paco has a game tomorrow night and the poor child needs sleep. But we made the deal that on a non-event sleep, we can try longer. Lemon did not cry, but I need to cut his nails. Lemon screamed as we tucked him in and put Paco to sleep in our bed. I checked on him and he grabbed for me and pointed to Paco’s bed. Something good we can take to task.

Awesome friends, awesome kids. Steve came home, late and hungry, and then Paco popped up and had a snack with his dad. Awesome dad.

Off to sleep.

If Your Dad is Magical.

20-21 April 2010:

So…it has been months since Avastin has affected me a great deal. I get sore, but nothing serious. Between the hangover, the lack of sleep and barometric pressure, I was wiped out yesterday. Steve tried, but I was so overwhelmed. I kept waiting for the 2nd wind, it never arrived. Today, Steve took Paco in at 8:15 and Lemon took a short nap. It was a short nap day.

My mistake was trying to do major clean outs – post Avastin and post Grey Goose. Yesterday and today my muscles and joints ached and ached. My head is covered in Tarceva scabs. So the house is not clean and the cockroach battle I was looking forward to has been postponed.

Two steps forward, one step back. I had been doing so well, I took it too far. Well, tried to cram too much in too quickly. The one step back is mostly organization and cockroach related. The step forward was me being paid quite well today. I was so pooped, that when I was on the floor, with my feet up, resting on the chair, Lemon crawled over and tried to snuggle. He tried. Eventually, he put his head on my ribs and stretched out. But then he had more cruisin’ to do. So, not a lot of sleeping today, but good love.

His snuggle mentor, Paco was collected and we sauntered home from school. We do plan to move some place less expensive in August, but it is hard to imagine. We love our neighbors and our location. It has saved us in many ways.

I told Paco about the snuggle moment from Lemon and Paco tried to mimic me. Alas, no luck. The key is to be quiet and get him to copy. Next time, I’ll snuggle Paco on the floor, and I bet Lemon tries to be just like his bro.

We moved Paco’s bed into Lemon’s room to give Paco more space to have big boy playtime. I don’t let him bring his toys out to the front room. Too many small parts of lego sets to risk Lemon eating pieces. So there is a Lego sanctuary. I tried to read a story to Lemon, but he was not interested. So we put Lemon in his crib and read stories in my room. Paco knew I was having a rough time. Yesterday, we walked together to get my blood going. I could not beat him. That is strange. He could just tell. He ate a huge dinner tonight (pasta and the turkey Bolognese from Trader Joes, and baked Zucchini) he and was so good. So good. For he chose Argentine books for me to read. He knows I love that. He helps me sound out the bigger words.

My favorite is a book called ¬Si Tienes un Papá Mago. I think it means, if you have a magic dad. But Chiqui’s dad is actually a magician. The books goes through all parents, and comes back to the magic words that Chiqui’s dad gives him every day. “Chiqui, que tengas un día feliz!” Along with a mountain of kisses and I think some tossing in the air. Every time we go to Argentina, I try to buy several books for Paco in Argentine Spanish. The authoress, Gabriela Keselman, does not use completely the Argentine dialect, but she writes wonderful stories about families. And most importantly, it reminds us to use kind words. They go a long way. Years and years ago, I used to massage my mom’s feet. She would soak them and I would try to rub them. She was so effusive with appreciation. And 25 years have passed, and I remember the magic words. I need to work on more magic words in this house. And I need to rub Barbara’s feet.

Paco and I then sneaked back into Lemon’s room and snuggled to sleep. I use to limit snuggling a lot. I just did not want to spoil the kids. I want them to be independent. This is important, but not as important as it once was. The privilege of snuggling, I almost lost it. So I still make Paco eat vegetables, but most of the time, we still snuggle him to sleep. Nagging does not make quite the memory.

24 Hours of Rewarding Interaction

Sunday was a bit of a sucky day. I was exhausted, Paco and I were arguing (again) and the house was in utter chaos. I spent Monday night with Colleen, and was never getting around to packing  up for one night and one day at UCSF. So I had to call in the forces. Vivian arrived and reigned in the kids. Clark and Babs arrived, and then Clark took Paco to his game. And I packed. I stuck around to hang with them, then gave Lemon the bath and put him to bed. Clark and Mom let Paco stay up, and let me hit the road until Steve came home. Thank goodness there is this network on which I can rely.

I hit the road in the new car, a 2-door golf, 5-speed. Steve and I are a bit too excited to have a little rev. We just figure this is our last chance to drive something small. Soon Lemon will have baseball equipment and we will be shuttling 10 and 5 year olds everywhere. So this was our swan song for a time. Steve let me take it to SF (JOY). On the way, I tried to hit BevMo, but it was closed. I have been drinking Kettle One here and there, and it just is not hitting the right way.

Exhausted, I arrived at Colleen’s hotel. I was worn out so much. Colleen gave me a second wind. She had found a few different airplane-size beverages for me to try out. Ahhhhhhhh. Grey Goose on ice. Colleen then added some Vitamin water. Just a splash and I drank it. We headed to Scalas (a fav restaurant near Union Square) with her Adobe Software Yoda: http://www.deke.com/. The glory of Grey Goose continues. I did not embarrass Colleen, or so she says. (I must have). She and I chatted half-asleep and late into the night. I don’t know the last time we had time to do that.

The next day, I was actually hungover. A first in over 2 years. A hilarious win. But a win.

For breakfast in Cole Valley (learning the ‘hoods in San Francisco), I met my old friend. Not old, but we grew up a few blocks from each other. In high school, we were close friends. When my dad started to become ill, I tended to push people away. When we reconnected last summer, we opened with apologies. I apologized for my horrible attitude when I was 18, She apologized for not being “supportive” in those days. This is only her mind. In my mind, she was. I made the choice never to visit her at UCSC, and I made the choice to lose contact with most friends from high school. She would have answered any call.

We picked up conversation like 20 years had not passed. She even ended up coming with me to UCSF. It was just a wonderful experience.

From a good meeting with Dr. Clarke, I went across the street for the infusion. Sunny had to actually go work (tsk!).

The team at the infusion area is just extraordinary. I feel like they are Brain Cancer Camp counselors. I had to make the announcement, for the humor effect. Laughter is the best medicine. And I had a hangover. One of the rockin’ charge nurses cracked up. She knew. She knew it was a weird hurdle to conquer, but a true one, nonetheless. I cannot drink what I used to love…wine, beer. I dislike spirits. So it was always a sip or two before the burning started. Now there is Grey Goose in the freezer. A good balance for steroid weeks!

Bea arrived to infusion, in burrito hell. I cannot eat anything like that after about 2PM. I am up all night in gas pain. Poor thing, she was. She went from constipation to the opposite. As we all do. Her dad ended up driving her to UCSF that day. And he was just warm and lovely. He reminded me of my dad’s parental warmth.

Papa Bea looked quite similar to mine. Though Bea’s dad was not as tall, and (obviously) thinner. But the hair, the skin, the curls, the gray at the temples reminded me of my tween years. Dad would ask Colleen to muss his hair all the time (tousle). I was in charge of tackling his tummy with a hug, an “oof” we would call it. That was the noise he made every time. Paco now does that to me, I just realized. He calls it a tackle hug.

When I asked if I could touch the hair of Papa Bea he smiled and said yes. I tousled quite a bit. Papa Bea had a beard. He said his wife would not let him grow his hair too much. I had to laugh. My mom did not like it when dad had a beard, so it did not last long, and she loved it when he cut his hair. For one moment, I could feel my dad’s hair. And we all cracked up.

At one point, there were four GBMers in the room. We don’t normally get to talk too much, but the nurses made sure we were all introduced. I don’t remember names too well anymore, none of us do. But they liked the hangover announcement, or at least humored me.

When I got home about 4, the kids were having a daddy fan club day. They boys were happily enjoying some daddy time. And Steve had the biggest smile I have seen in a time. Then I got the Lemon baby dive. Ahhh, the baby dive. And the tackle hug. Steve and I smiled. I am paid so much.