Why Is My World Not Perfect?

Augh. I don’t remember much of yesterday. I was exhausted (due to the heat, I think) in the afternoon. I grabbed an amazing 9 min nap that enabled me to function. Except my tongue was still on fire most of the day. I ate a bit of this, or that and the searing engaged.

The kids wore themselves out at soccer fields and despite the heat, the day went relatively well. Lemon is a great kid in a stroller. No sleeping, but he enjoys the views of traveling. I have to start working with him more on holding hands and walking.

Today, I had to go to Vallejo to get the Mazda serviced. Our choices for warranty work are Elk Grove, Roseville or Vallejo. Ugh. Vallejo started out ok, but after too much over promising Lemon and I were so wiped out. He was a good sport and spent 5 hours in the car seat, stroller or a high chair (Steve met us for lunch). The irony, I was running 20 minutes late this morning and called the dealership. They ran over 2 hours (probably 3, I gave up) later than the estimate. My attitude has changed. Before I would use my rage to get what I wanted. I would argue for effect, for righteousness. Now, I find it exhausts me. I argue with Steve (even that has receded) and Paco, but in general, I just get exasperated and close the case. Sometimes I am brusque, but not too long ago, I would make valid points; now I seem to just walk away in a hostility cloud.

I was so tired, as was Lemon, that I gave up and ordered a rental car. I was just close to tears of frustration. Do not overpromise. Under promise. Did Saturn teach us nothing? Under promise, over deliver!

Lemon was a stellar kid. He put up with so much. For a few moments, at the beginning, when we were walking towards the restaurants and stores, I dreamed of walking with him on a trip. Buenos Aires? Rome? That was the first two hours. After pushing 25 lbs around for 4 hours, I dreamed of a cruise, where I could sleep, eat, exercise. Sleep, eat, exercise.                          Yea, yea, views. Sleep, eat exercise.

I ended up renting that car without losing it and they are going to comp it. But I have to learn to complain without rage. I have to learn to be polite and efficient. I find that I am two extremes. I am frustrated or overjoyed. It depends on the day, the exercise, the fatigue. That does not seem rare at all.

All is Good

Sleepy. Skin is still scarred. Lemon is work, but I had a good outing with both (to Target) this afternoon. It used to be overwhelming. Life is getting easier, day by day.

Three separate people found this article:
http://www.google.com/hostednews/ap/article/ALeqM5gX4eP9olr-BpEqV7WSPw3NtSM-oQD9IG1E701 [ or http://www.cbsnews.com/stories/2010/09/27/health/main6905221.shtml ]

I cannot say the side effects would make it worth the cost. Everything is a small side effect, but it is constant. I still have slowly healing skin and tongue. Dr. Adams saw my tongue yesterday and seemed surprised it was that bad. My mom said, “it is better than it was last week.” I told him I miss red wine. He understood. I called Tarceva wicked. He agreed.

My hope is by the time the climate temperatures drops I can sip a good Cabernet Franc. Davis is a place of generous vintners. I have two bottles which were given to me, waiting for my body to be ready.

The word “remission” is exciting, but until I get a few MRIs without the arsenal of Temodar, Avastin and Tarceva, I don’t feel…I don’t feel I am yet there. It sounds crazy, but the sore knees and slow-healing skin is a reminder of the nasty treatment in my system. A strange feeling of the arsenal, keeping an eye on the enemy.

Remission?

Dr. Adams actually said that word!

BP was 108/66. The lowest since pre-labor!

OK excited and slightly scared. With mom. Happy.

Steve Walks!

My beloved. He and Paco have traded beds in the night. So Steve can try out a firmer mattress and see if it helps. Today, was Paco’s first day at Sunday school. We gave him the choice between Temple or Roman Catholic classes. He opted for the Temple. For Steve, it is a surprise. I guess Paco has seen enough of the Catholic church, and he misses Holy Spirit in San José (as do I). So he wants to see the earlier culture born. I am ok with that.

I have never seen Steve willingly go to a Temple. Certainly never seen him leave one happy. I am sure after his Bar Mitzvah he was relieved. Today Paco started Sunday school at the local Jewish Temple. Today, Steve was simply happy. He said that it is just a nice community. When I met the Rabbi 2 weeks ago, I explained that I am a Catholic. And he said, we just appreciate nice people to join our community. I like that I don’t have to go to services to let Paco explore. The goal seems to be to encourage knowledge of everything. If Paco wants to change next year, that is ok too.

I had booked a massage for each of us at Massage Envy. I have wanted one for a while, my joints are so achy. Steve keeps looking for a gift certificate he has, and he cannot find it. With the current injuries I cannot wait! So Friday, I called and they had openings for today. I went first (at Noon) because the person available at 2 is more medically educated. I was impressed when I told the receptionist the medical issues we had, that she was so in tune. She ensured Steve’s back took priority. Mine went well, just fine. I was concerned about Steve’s walking with Lemon in the stroller to Temple, but he did. I did not get an emergency phone call. I came home to a happy trio of boys.

Steve took off for his massage; he came home walking straight up. He said he fell asleep on the table. He has not been able to sleep on his stomach for 2 months. I saw him smile for a whole afternoon.

Alas, I saw a rat in the garage. We had seen one outside last night, but not in the garage. I have had bad experience with rats (one in Oakland 8 years ago held us hostage for 36 hours, long story).  Steve set up traps, it went off, but no catch. Icky. As a result we went on a family trek to the Co-op to get Peppermint Oil. Aunt Pat had given me a method of deterring rats using peppermint oil. The boys were just happy to be together in the market. It was hilarious. We then ate out at a pizza and grill place. Lemon flirted with everyone. I ran into a runner’s group guy, who was out with his son. Steve is his name and I would guess he is  about 50. He asked what had happened to me, dropping out of the group, and I explained that everything just got too much with heat in the evenings and chemo. He had a shocked look on his face. He did not know. That is kind of…cool. In 1997, he had suffered from Ewing’s Sarcoma at an age closer to 35 than to the teens where it is more common. You would never know now. He is an attorney for the state and just a good fellow.

The other funny thing today is I wore a t-shirt from Paco’s school (Cesar Chavez Elementary) and was complimented twice for wearing it. One, I think someone who did not realize it was for the school, not for the activist (she was younger and UC student-looking). But the other was from a parent whose daughter had just left Chavez to go into Jr. High. He thought I was cool because my kid went to a good school. That was after he and his wife had played peek-a-boo with Lemon throughout dinner (Lemon used a menu and the other dad used the pizza stand to hide behind).

There are restaurants and friends I miss in San José (sigh, I miss my Spanish lessons with Caro, Juli and Debbie so much). We all miss the Persian restaurant (on Union and Foxworthy) and Tacos México (soooo good and cheap on Bascom) and of course, Pizza My Heart (all over). But the strangers here, the sense of community, cannot be outdone. I thought it would be so “green” that it would be exhausting. Nope.

Today was a good balance of family and a small amount of independence for each parent. Steve distracted himself on the way home by entering an open house 2 blocks away. We know we won’t buy for a year or two. But it was a nice feeling. I showed him the house that I wanted later. He thought it was cool too. We agreed that we will stay within walking distance of Chavez. It makes life so easy. Lemon will go there in a few years and Paco will be old enough to bike to Jr. High on his own. This area is also close to the Davis High School. I like that too. In my high school days, my parents always let me have friends over. They would rather me be home than out. I remember members of the JV Football team thinking my parents were cool because my dad let them use his chips to play poker. Funny, I think they thought I was cool because my parents were cool.

I think I am pulling off being cool here because of Paco and Lemon. I’ll ride that. Oh, I was sore and tired today, but the happy company outweighed the aches and pains.

Today Will Be Good

Tommy saw the corn on the cob in the fridge. It is leftover from Friday night. I figured why not, it will let Steve and Paco sleep, as Lemon is entertained.

Productive Beginning…Fantastic End

Paco had an early soccer game. Each player usually play 3 of 4 quarters. In the under 8 division, there are no goal keepers, just teammates. There is a kid on Paco’s team who was not passing. And Paco does not focus on scoring. He is all about defending the goal. The coach literally coached the non-passer to stop trying to score, and pass to Paco because Paco had not scored this season. Paco was frustrated that quarter. He knows what he is good at, so he did not really want to focus on scoring. He wants to focus on stealing and passing. Once he reaches the age of goal keeping, good luck pulling him off that position.

I love the closeness of the fields to us. I walked there with Lemon. Lemon was a good sport about being stuck in the stroller. I admit, I did not want to have to chase him everywhere.  I started to walk back and then Steve took over. The boys wanted to be together in the car, but we could not collapse the stroller. Steve decided he wanted to walk. So, he walked an empty stroller home.

The highlight of the day could have been Paco’s game. Alas, no. The parents of boys in Kindergarten (last year) are sealed. I did not make their poker night last month. But I wanted to host this month. The weather was cooperating so beautifully. We ate outside, played poker, controlled (ok, not really) the kids. It was a beautiful night. For 30 seconds we got the kids to lie on the grass (on sleeping bags) and to see Jupiter. Then they gathered flashlights and went crazy. Sigh.

Lemon held in there, then became exhausted. He saw one of the moms through the window while I changed his diaper. He hit the window and yelled to her, “Momo! Momo!” He is enchanted with the moms.

My thoughts on the walk, and tonight are thoughts of happiness. Walking, Seeing, Playing. Davis. Steve made these friends last year through Paco. I get to keep them.

Two good days in a row. Ahhhhh.

Barbara-mamaaaaaaa

A Good Day.

Cleaned the garage a small amount. Costco with Tommy. Mom arrived to collect Paco in case I was late, then she became the folding laundry fairy.

Babs sat in the little alcove at Paco’s school, and witnessed the wonderful community of which I am a part. Sara brought tiny tomatoes to her son’s teacher, but there was a sub today, so she passed them to me. My mom was in awe as Lemon, Paco and 4 of their friends consumed the full basket in 2 minutes.

Lemon seized Bab’s water bottle. This has become their game. He takes it every time and they play mine, yours. Mine. Lemon left her bottle at school. It sounds strange, but Paco and I were happy to go back and get it. Our time together is rare. Just the two of us. One of the things I love is that I never have to ask Paco to hold my hand in parking lots or crossing streets. I put my hand out, he reaches for it; we have no words and no eye contact. He is 6 and can cross the street at the crosswalk just fine. But when it is just the two of us, it is a treat.

I was not as productive as I had hoped. But listening to my friend in my head helps. I did not need rest today, as much as tossing some boxes and cleaning up a bit. I only did a bit, but I did a bit.

Mom left to go to bridge in the evening. Lemon stood at the baby gate, in tears, “Barbara-mamaaaaaa, Barbara-mamaaaaaaa.” He was ok once we walked outside to give her one more kiss.

Exhaustion, Cause Verified by Friends

Cancer side effect? Sure. The boys? Oh yea, they are exhausting.

I woke up this morning in a fog, but to smiles. Steve had to get to work on time today, and I tried to cooperate. Alas, no coffee for me. It is just not agreeing well. And I am tired of side effects. Thanks to being in Davis, I can walk to school and see moms and dads looking exhausted. It makes me feel like one of the crowd. When Lemon and I came back I decided to go to Target, by the time I got there, I realized I had no list. So, I headed to the Starbucks drive through; again, could not drink the coffee. I got home and by the 2^nd sip Lemon was keeping me company in the bathroom. He investigates a lot.

I tried tea and never had the energy to work with espresso. I was/am just in such a fog. I sat on the futon in the play area and Lemon brought me toys to play with. About 9:30, I tried to put him down for a nap. He is more of a 12-2 napper, but some days, I can get an earlier one out of him. And I was desperate. So I gave him books and blankies and animals and for 90 minutes I was in and out of sleep and I heard him talking the whole time. The next thing I knew it was 11 o’clock. I was still in a sleepy state. But he ate sweetly, then played a bit, then he walked to his crib, he let me rock him and really took a nap. I showered, then passed out. Nothing was done, no dishes, no clean up, no laundry, no unpacking. I slept for about 40 minutes and I was so frustrated. I returned a call to a friend who had been through huge health issues, AIDS and Cancer to name the dramatic ones. I confessed that I needed advice. I feel ok, the next day I am just so worn out. He said it was a hard thing to be close to death and then turn the corner and have to change his plans. It was hard to want to take on the world when he felt well, then, rest when he did not. He told me days I feel good, seize it, but when I don’t, get the rest I can. He could not imagine having Lemon to chase around. He had watched his grand-niece and nephew the day prior and was exhausted. I think they are 9 and 13.

It is friends experienced in recovery that help a great deal. It is a slow pace. I want to be rid of the sores and find some energy. Alas not today.

Lemon and I returned to school to collect Paco. I set Lemon free. At school he toddles around, owning the place. What I love is lately, while we wait for the class to be released, he checks in like a penguin in the cold. He forces himself between my knees for a moment, 5 seconds … as though he just wanted to reconnect. Then he takes off on another adventure.

Paco and I worked on his homework and I snapped at him at the end of it. It was all me. And I don’t know how he seems to take my apologies well. When I get tired and he creates the normal amount of work for a parent to do, I get so frustrated. On the upside, his assignment was to find numbers in his world. I asked him, aside from family, what does he love. I was expecting Legos, Star Wars, Wii. No, it was Sports, Travel, Eat. So the numbers we put were the calendar for the UCD football games, coupons from food and then I got out a photo of him, under a mileage sign in Tierra del Fuego.

“Moooooooooooommmmmm, I am not presenting this homework [to the class], I don’t want to waste a picture.”

Our Kate arrived and took one look at me and sent me to bed. She tried to keep the kids quiet, but they are so loud. Ok, Lemon is so loud. I took my 3^rd 40 minute nap today, then got up and met Steve for dinner in Vacaville. We ate at The Olive Garden. Yes, yes we did.

I was quite honored when Kate told me she had slept until 10 this morning and was 22; and my kids exhausted her. She said all evening she was wondering, “How can Erin do this on chemo?”

I get paid much more than she.

I am…Frustrated

I know it will take time. I have had some good, some annoying days. I am still Avastin sore and Tarceva tongued. I need to focus on something else. And I need to stop waiting for my tongue and skin to clear.

We Learn From Others

The foot photo was on the way back from taking Paco to school. I saw Lemon’s feet rubbing each other, like mine. The little feet which I like to eat.

We were home. Lemon was not sleeping and I was trying to clean up. I was tired, but I had a plan. Then the phone rang. It was Chris, my breast cancer buddy, calling from Sutter Hospital here in Davis. She had a seizure due to swelling in her head from a metastatic tumor. She has been fighting these tumors for a while now. The tumors have not grown, but she had to take high doses of steroids, which make us crazy and we load weight. Ugh. I would say “poor thing” but she has mastered picking herself up. Lemon was a good boy, hanging out in his stroller for hours. Chris and I cracked up, and expressed anger one minute and hilarity the next. Her friend Jenny arrived and Chris felt we allowed her to be whoever she needed to be. We all hit a point in the frustration of cancer: one step forward, two steps back. One has to scream, cry, yell, beg, take me now, where is the damn dark chocolate? Where is the vodka? One needs to make these noises in front of someone who understands. Today I said, do you want positive or negative? In her manner, seizure girl wanted positive.

I left to take a walk to Starbucks and give Lemon a fresh view of the world. At Sutter, they have a wonderful meditation garden, with several benches tucked away, privacy and peace. With one woman who was leaving I started up conversation. I have been working on this letter to my mother-in-law in my head all day.

Dear Judy,

Today, I got a call from my breast cancer buddy about 9:40 this morning. She had suffered her first major seizure. I went to help, and Lemon was awesome as always. Chris is always supportive of my efforts in Spanish and her RN is from Guanajuato. Her name is Martha. So I had to tell her about you and your mom, and why I learned what I learned. I left there inspired by Spanish. Walking through the “Meditation Garden,” I started talking to a woman who was carrying a book on Spanish verbs. I mistakenly started a conversation.

She (about 60) was whining about how she had just learned a few phrases and her friend told her to learn more before she goes to Mexico for vacation. She is apparently, a 5^th generation Californian. She is named Barbara. I said, “hey that is my mom, she has really studied Spanish and her grammar is very good.” This Barbara went into a 10-minute defense of “why I don’t speak Spanish” monologue. I explained that the same thing happened to you and you always regretted not making the kids speak Spanish. I said about how at your age you own your Porteño background, and my mother has taken classes in Italian, French and Spanish in the last 15 years. And you were grateful for what Steve and I had done; you gave us credit for bringing Argentine Spanish back into your world. The Hospital Barbara claimed her nickname is “Barbarita”. I withheld my words. I was thinking shouldn’t it be Barbaracita? I was also wondering, when she said her parents were from Colorado, “doesn’t that mean she is not a 5^th generation Californian?” I cackled in my head.

I would love to drag my mom to Bariloche, and you and I could force her to speak Spanish, and she could eat the best fish I have ever had in my life. Thank you for keeping the door to Argentina open.

Love, Erin

Ok, back on track. I love Spanish; it has given me a hobby in life. Spanish was the child born when Lemon would not be conceived. My friends had baby number 2 and 3, and I was unsuccessful for a long time. Spanish gave me something to be distracted by, something to grow within me, when I could not get a Lemon to take root. I always wanted 4 kids. I got 2, I have Spanish, and I have friends who are going through similar efforts with cancer. And we have the gift to give each other – support. Tonight, I was chatting online with Chris and Bea at the same time. I asked Bea advice about the seizures and the fall out. Then I immediately relayed it to Chris. That is awesome. They have never met, they don’t have the same type of cancer, and they live 100 miles apart.

So on the bright side, since 2004, my life has widened. In my heart, my life has not shortened.