Feb 28th, 7 Years ago, at Kaiser

7 years ago at Kaiser Santa Clara we were awaiting the birth of Paco who put in his appearance after midnight … so he is a Leapling.

Today I had a plan to leave Tommy with his abuelos and head to Sacramento to take care of some medical paperwork. Last night, at midnight I grabbed an appointment for Paco in Vacaville. The poor child was just looking worse and worse. We headed to Kaiser Vacaville this morning. The whole time, I was grateful that I only had one kid with me. I was grateful that today, I got to be alone with Paco. Mis suregros looked after the Lemon.

Paco has Impetigo and it has 80% gone away after 2 doses of antibiotics. Thank goodness. While we waited for the pharmacy, I dragged Paco to the medical secretaries office. The clerk was mean and rude to the 2 people in front of me. And the two women were not mean, nor rude to her. When I got there, she was so agressive and unhelpful, unkaiserlike, I was highly irritated. Paco and I then spoke to a Pharmacy Clerk and Pharmacist who were wonderful. They realized it was Paco’s almost birthday, they both showed him a great deal respect. I said to Paco, afterward, “is it ok with you if I go complain about the woman we saw before?” He said that she was mean to the people in front of us. So yes.

We went up to customer service and this kind woman sat us down and I told the story. She asked about what I needed and I said, I can go to Sacramento and get what I need to get (the MRI on disk for UCSF) but these women needed to be treated better. (I had seriously wanted to yell at her to show them respect). Paco interrupted me. He explained to the woman, documenting our complaint that the women were mistreated. He said, “She was just mean to them. And they were not mean to her.” The person who took our complaint stared at him with a smile. And she wrote the names down of everyone we appreciated today. And is talking to the manager of the grumpy person.

Paco opted for See’s candies over ice cream. And we collected sandwiches and then delivered them to the abuelos.

I suggested Paco stay away from Lemon and find peace elsewhere in the house. In his room, he watched tv netflix on my laptop. The abuelos went to sleep and I took a power nap before rescuing a poopy Lemon.

At the end of the day, I got the chance to spoil a sick child on the day before his birthday. To him, his birthday is March 1st in off years. I love this about him. He is mathematical. He is 7 going on 30.

Tonight, my father-in-law complimented all of us…again. I see why. We have an advocate in Paco. And we have spirited youth of Lemon to keep us younger and on our toes.

A Good Sunday

Here was my day…details later. I am too happily busy. And man, I need to sleep.

Sunday AM, wake up, bond with visitors, make espresso for adults
Sunday MRI at Kaiser. Awesome! Place is empty and the woman who did my first MRI was on duty. She made me feel so…cool. More on her reading material later.
Shopped at Bevmo for fun since Kids were home with abuelos
Delivered Irish whisky to priest at Newman Center. He was not there, left package.
Visited with mom and beau-père
Visited with sister
Met up with family at Target
Father-in-law said, I see why you are so tired, pointing at Lemon.
Yummy dinner (yea Harris Ranch tri-tip from Costco)
Oscars, chatted with exhausted group and just…happy
Climbed into bed with laptop. Steve’s comment: You are amazing. Those kids are beautiful, but I am exhausted.
So I feel, like the superstar of my world.

We Kicked Lemon Out of His Room

Steve and I are happily sleeping on a floor mattress in Lemon’s room. He is in Paco’s room in a pack n’play. This is the farthest he has really gone anywhere. OK, a night at Barbara’s and maybe one or two at Shannon’s, but nothing out of Northern California.

Steve’s folks arrived this evening. And I was quite sad that they had changed their flight from yesterday to this evening (a fear of snowstorms holding everything in suspense). I was full of anxiety and blues due to the change. Then slowly, this evening, I finally got things in order while Steve and Paco went to collect them. And when they arrived, it was just wonderful.

We used to go to Michigan often, but with the economy and the 2nd child, we have not. Also, I admit, I don’t want to spent $1200-$1600.00 to go there. Chicago, Denver, Seattle, yes. But not Detroit. I am so glad the in-laws arrived today. They took Paco and Steve to dinner and were so complementary towards Paco. It was Paco’s first dinner in a very long time without Lemon yelling about something. Then Paco sleepily stumbled to his bed and Lemon awoke when he heard Steve fall asleep next to Paco (he tends to do this and snore). Lemon woke up and was confused. I picked him up to let his abuelos see him. Mike had not seen him in almost a year, and Judy since last summer. Lemon looked suspiciously. Then we showed him the photo in his room, of the abuelos and Steve and Paco and he grinned as he put together the faces and the voices.

The six of us sat around the table for 30 late night minutes chatting and laughing. Just like that, my blues were gone.

The other great start to my evening was the local grocery store chain, Nugget. Lemon and I went there this evening to get fresh bread and cheese. I explained to the cheese person that my mother-in-law would like the stinkiest cheese they have. And he was so happy to show me. I said, she loooves stinky cheese. From there, I went to the liquor section. I always seem to make a vodka friend. Larry from Nugget was no exception. I think he is only a bit older than I am and he is from the same neighborhood in Carmichael where I grew up, and he  had 12 close family members with cancer. He gave me a wonderful quick education about vodkas and why I liked what I liked. He even complimented me on my Chopin hunting. We spoke about Avastin and he made me feel like an expert. I repeated what I always say, that I believe the kids made my Avastin life much easier than for other people. He said his father felt the same way, and would fill up his day to put the side effects aside. He told me that from what he witnessed, it would be 7-8 months after going off of the stuff before I didn’t feel its affects. For me, I almost to 6. My energy level has improved, but the darn tongue issue almost seems permanent. I think it is chocolate, and then something else triggers it. It is not the end of the world, but it is…annoying.

Steve is snoring next to me and it is late. Paco is coughing, so I should be ready to be on late night mom-duty!

I Am a Tree

I am a human gym. As I wrote a few days ago, the kids are a good distraction. I am exhausted from the full week and so happy to have Steve to help with Lemon most of tomorrow. Today, I gave up trying to get anything organized and just hung out with the kids in the play area all day. Paco had carte blanche today…our plans had changed and he needed a boost. Normally, I am strict with Wii. Not today. I also discovered that Lemon likes Blue’s Clues. So for 2 hours, I watched it with Lemon and he would sit in my lap, then climb up and over me to the sofa. Then roll off back on to me.

The minus: I was a human gym. The plus: there was nuzzling involved.

Paco is worn out by his small brother and I do not blame him. I think he longs for school and more mature conversation. That seems reasonable.

Sleepy, Up, Down.

I love the hour between 11 and Midnight. I try to turn out the light, but usually not before 11:30. Some days, I will sleep, but usually, Steve and I have sleepy conversation until Midnight. It is such a balance. Kids, time alone with a love, time alone. Time at work for Steve, time at home for me. It is the negative of the electronic revolution. I could be reading or writing letters. But no, the TV is on and I keep looking at overseas flights. A month in Ireland, England, Italy, Spain, Argentina. I so want to drag the kids to a place I have been but do not know every inch. Instead of interacting with the keyboard, I should be interacting with people.

The day started low. Not horrible, just exhaustion. After a great nap the kids came with me to Costco to fill the fridge for the Abuelos. At the end of the great shopping around (where Paco tried samples wherever he could) I was so relaxed and excited. Then Judy let me know, they changed their flights due to weather. Eastern US is in a deep snow world. I understand, but it changed my whole perspective to a negative one. Not for anyone’s fault, just for an immediate loss of time. Time with nice people, time with and without the boys. Time.

Today, BCG retouched me. I do try to leave her alone. She is carrying the burdens that Steve carries and the ones I carry. She is the primary income earner, she has metestatic cancer and she has a beautiful daughter to worry about. She felt horrible for not being in touch. But we do tend to leave each other alone until desperation. She finally came to terms with the negative side of her future. She said she was in denial about her prospects. She had not really paid attention when someone told her she had 2-4 years to live. She was told that 2 years ago. The 2+ years she has made it actually improve her long term odds. I joked, welcome to my world! She seemed surprised that I was the same. Or at least similar. She joked about having a survival bet. She did not realize the stats for Glioblastoma patients. In a way, I was flattered that she did not take me in as a patient with an equally…interesting…future.

Steve is lying next to me, and he wonders why I am so blue. And I realized, while talking to him, that part of it is my narrow world, or rather, my narrow spectrum. I go from arguing with Paco, or my mother about what I said or may not have said (Paco in Spanish, mom in English), and staring Lemon down until he stops climbing up something to talking to an MD about treatments or side effects or…prognosis. I have a weird spectrum in my life.. Not much view in between narrow and wide. I am not complaining, I am just thinking out loud. When will I learn to balance the middle of the spectrum?

I know putting more in between a narrow view and a wide view would help. A hobby, a project, something…bigger than a piece of scrap paper but less heavy than a bale. A ream-size would be good.

As I said, I am not complaining, but I am expressing regret. My dad was in this narrow world and it must have sucked. I see why he turned on the TV at 5:30 AM, I see why he called and ask me to pick a speck of paper off of the floor. I see that I should have answered to his request and picked up the paper off of the floor. I should have sat there and read to him or learned something new with him. I should have made more of an effort to have been his hands. I should have taken the opportunity to widen his world. I don’t think I ever did.

So down, up and down. Perhaps the blog is the way to sway in between the world of making sure the kids are covered in the rain to filling out forms where I write “Glioblastoma.” As I have said before: this is a good form of therapy.

Happily Tired

The boys had a good day. I was not too sleepy. Paco was exceptionally good. Lemon, good but loud.

I am tired now. In a good way.

Such a Good Day

Such a Good Day

I think today was one of my best days since November 2008. Paris. Ah Paris. Obama. Champagne at 6AM. Two of my closest friends in a dumpy flat in Paris on election day in the US. Text messages from Steve all through the night.

I had other good days, Dec 8th of the same year, March 8th the following year, and the celebration of Lemon’s baptism. But today, was the most normal feeling day in a long time. Jetlagged and pregnant and in Paris had been my height of health.

Today, I forced myself to take a nap while Lemon napped and Paco watched TV. He honors my rule of no Cartoon Network or things with assaults. Mostly he puts up with watching what is Lemon appropriate.

But before the nap…

Paco and I pushed the stroller to Trader Joe’s. Paco was at Lemon’s call of “Caco?” immediately. It was a wonderful invigorating walk. Paco was so proud of himself. And so was I. After nap time we headed out to Target to get some additional photo albums. Paco has been working on his photo albums. More on that later.

The main thing is that I felt normal. I felt good. I was tired but like any person sleeping next to a snorer. I did not feel stuck in a haze. I did not feel trapped, I felt happy. In this moment. I don’t have shin splints. This is one of my best days in over 2 years.

One of the highlights of my day was conversing with my father-in-law. For years, we have been the drinkers together. We love red wine, the conversation, the ritual (I should not speak for him, to be honest). And now he knows red wine is not that doable for me. He is ok testing out vodka with me this trip. I have 6 types in the house, 4 are open. I look forward to making him taste all 6.  Blue Ice, Stoli, Lotus and Charbay Ruby Red Grapefruit Vodka are open. Chopin and Cîroc will be opened Friday night. He is a good sport.
Tomorrow I am sure I will be tired and that is OK. But today, today was a good day.

The Benefits of Distraction

 

 

Paco is off this week and I, foolishly, did not enroll him in anything. I should have. Finding limits in the house over and over again. Don’t do this, don’t do that, no, no, no. OK, I do try to be more poetic. But for goodness sakes, it is a true test of love and patience.

 

Steve and Paco, in general, need more affection than Lemon does. They need more than I do. Steve has adult conversations all day, but no little Lemons going up to his legs and giving a leg hug, or a 2-second snuggle. And Paco loves TV, but when he searches for affection from Lemon, Paco invades Lemon’s space too quickly. With Lemon, he has to come to you. If you go to him, he pushes you away. Paco cannot learn this. He does not understand giving space to a small child.

 

Then Steve comes home, the kids are bathed and in bed. Steve is lying next to me and we are watching TV calmly. During the day the physical distraction of the kids, if I feel the exhaustion or the tongue sores, it is put aside for laundry or food. But now that I am not up, my shins are driving me nuts.

 

What if a person has a stage 4 cancer and no great distractions? If you ever meet someone who is in pain, distract her. The kids are driving me crazy, but regardless of cancer, I would have still have shin splints. I don’t read much anymore, nor do I study Spanish like I should in the evenings. In the past, I have allowed irritations of side effects to catch up to me in the evenings. What is it like to not have work, or active frustrations and let every ache, pain or side effect catch up to your awareness? What if you don’t have friends to call at 9:30 at night? What if one is elderly and not addicted to their handheld mini-computer? I see addiction, I see the need for medication to calm at night. I see why Steve’s back catches up to him after a long day. The noise dies down, and the irritations get louder.

 

So man, those kids are driving me crazy, but I truly believe they have been the best treatment for which I could have asked. A loud, beautiful distraction.

Abuelito is right!

Mike told me that saline was the best solution. He was right. Paco watched Phineas and Ferb and sprayed his nose. Between mom nose massage and a steamy bath, the passages are clear.

I realized that my experience with Tarceva has made me obsessive about moco. I am an evil moconator.

How do I not pick this?