Monthly Archives: May 2011

Things I Have Learned Today

 

 

In minor ways, this surgery recovery is more challenging than last time. Not in the grand scheme, but in the little ways it is more challenging. I chose, this time, begged, to be on steroids for the minimum amount of necessary time. Last time, I turned in to a raving b-i-t-c-h. I remember Shannon taking an elegant high road and asking “mmmm, do you feel like yourself?” to see if I understood what was coming out of my mouth.

 

But I do not remember my over all body being in so much pain last time. I remember having an allergic reaction to Dilantin and switching to Keppra, so perhaps that was a moment of relief where I blocked out the pre-misery. I also remember feeling weaker last time. And actually, I walked 2 miles yesterday and will have done almost that today.

 

I do not remember taking much of the vicodin equivalent last time, but then, I am heavier this time. And perhaps one of the great differences is to know the big picture. When we had Steve’s party, as I said, I over did it. And Judy picked up a fair amount of responsibility for me. So we are both simply tired.

 

My legs are sore and my feet ache. But then, my head is ok. My head is ok. Yesterday, I made my aunt and uncle (or maybe my mom, I cannot remember) feel the different temperature on each side of my head. I surprised both of them. Yet for me it is one of the things I keep forgetting to mention at check ups for the last 22 months.

 

I think the key is to look at this time the way I look at Avastin. I feel like there is a huge weight lying on top of me. I feel sore, I feel cramped. But the key to Avastin was having children. I had to get up and change a diaper or read a story. To this day, I think having a small child made me recover faster after each infusion. In ten minutes I will go get Paco and then Lemon at school. I will be hugged and kissed and escorted. I cannot even complain. (OK, I will not complain).

 

Perhaps in my memory, when I compare the two surgery experiences, I am not thinking of the first month, rather the second month when radiation began. It has only been two weeks since the surgery. This I must remember. I forget I am so short-haired or have stitches until they itch. I just want to crawl into bed and sleep. I am not sad, just sleepy.

 

Today at Lemon’s preschool, a woman I do not really know expressed admiration for my vivaciousness. She said she had undergone a c-section and not been so strong. I explained, my best friend had three c-sections and I think they are substantially harder (actually, between my closest six friends, I think there have been 7 c-sections out of 14 births). The  woman shook her head in kindness and said, I don’t think so.

 

Experience is a huge asset in this arena. Don’t get me wrong, there is pain and concern, but I was really not expecting to be this brain-healthy after the fact. I really thought I would loose more words, lose a language, lose so much more.

 

As one can see, the blog is always a wonderful form of therapy. Today, I can walk. I can speak, I can read. I really should just take the damn pain pills and be grateful that I have what I have: the most incredible family and group of friends. It is a verbal, complimentary society where I live.

 

I am sad to see my father-in-law go. He went home today and left his beloved wife of 46 years here to help us more. I like to think he went home to plan to convince his daughter to move here in the fall. But that is another story…

 

Don’t Worry

I know about this:

 

http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/26776

 

I had asked when I first was diagnosed, but at the time, the research was not clear. I have used a headset longer than most.

Affection in the back

Paco always has love to share.

Affection

Road trip

Overdid It

I overdid it. Too much of being active. Thank goodness my in-laws are here. I was sent to go lie down after dinner.

 

Life is good. My body is just pissed off at me.

Steve’s Birthday Part II

It was one of those casual but pleasant days. Rain on and off, and few people seemed to be bothered. Independent kids. Good sandwiches from a local deli, an amazing cake from Baskin Robbins (shockingly so).

Steve has been a twin for 42 years (sorry for the age disclosure, su mezilla). Since I have known him, at least one parent has been with his twin sister on the day. This year la mezilla went without her folks for Steven and the surgery and all that followed. So my surgical issue was a good excuse to have Steve with both his parents on his actual birthday for the first time in twelve years (when twins turned 30, we celebrated in Bodega Bay, ahhh).

I had thrown it out there to invite anyone around, and despite the camping tendency for the weekend (for most of our friends), the Toby and Bea (and awesome spouse) Glioma team drove from the peninsula, my siblings came with their boys, a few good friends and their spouses (and their children) from our twenties/singles eras and VT from school (she would not put the dot to make the question mark on my head complete, but that is another story) all arrived this afternoon. And for a glorious 4 hours, we just hung out and ate and chatted and chased around the kids. It rained and folks came in, it stopped and folks drifted outside and in. It was just simple and pleasant.

Five years ago, Steve spent his birthday in Buenos Aires, his 92-year old grandmother had died the day before. So he got to spend his birthday with his mom and some good friends at a wonderful restaurant in Buenos Aires (because his grandmother had just died). In the last 12 years, he has spent 3 birthdays with his mom and 2 with his dad. It is so weird to me that one was due to his and his sister’s turning 30, one due to his grandmother dying, and one due to his wife having brain surgery. Man, he is a good sport.

For him, I think the highlight today was hanging out with Paco’s godfather, JM. They have been friends for almost 20 years: right out of college. JM brought him a huge remote controlled car. And for an incredible time, he and friends hung out in front of the house and just played with a car. For anyone who knows Steve, this is an ideal time spent.

For me, I had a couple of highlights. I did not sleep well last night (about four hours: Steve, snoring like you would not believe…holy cow so loud). And I was not functioning well. I was so tired and just physically worn out. I was so glad to see people but I was, indeed, weirdly quiet. VT and Bea both seemed…not worried, just slightly confused by my demeanor. I was also not really drinking which is odd in itself. Instead, I had to take Vicodin due to my head. And in general, I was not sad, just tired.

I felt so at home. (Yea, yea, in our house). No, rather I felt so low-key and relaxed that I was not so angry or frustrated at much once someone got there (VT, the first!). I was just happy to be around people who knew me well and did not freak out about my questioned-marked head, nor seemed intense. It was easy.

[I have been hitting the level of schmaltz a lot. But today it was more intense due to the fatigue and general feeling of celebration.]

My beloved nephew, Bdublet, had taken a formidable nap earlier. So Bdub, the big brother, came late, at the end. Bdub and I spoke about the rush of the week: the clean MRI after the surgery, knowing words, liking my husband, loving the boys, etc… And I helped him change a stinky diaper (a strange level of bonding, but it was a true bond).

Brandon and I had gone through a quick talk about my brain, the possibilities, and what to do next. Brandon is an exceptionally easy-going fellow. He always has his life in perspective. I think he has said two negative things to me in fifteen years and both times he was sooo correct.

When it was time for them to go, Lemon and I walked Bdub and Bdublet to the car in light rain. Lemon held my hand and was just enjoying being outside.

And suddenly, standing next the car door, saying goodbye, I just burst into tears. Not sad tears, just overflowing tears.

And I just cried in relief. I cannot remember exactly what I said to Brandon, I think it was, “I am sorry, I am just so…grateful.” And Brandon held me like an awesome big brother and told me I was feeling what I should be feeling. And he just held me there, while Lemon held my hand. And I was safe to let joy escape into my brother’s arms.

I still do not know whether or not there is, was a new tumor growth in my head or was there just radiation damage. I’ll know more about the future in a week or so. But the surgery was so clean and I am so functional; I am swimming in relief.  I keep breaking into tears feeling like I am in a waterfall of euphoria.

As Bdub left, Lemon walked up and down the sidewalk, holding my hand. He liked being in the light rain. I have not spent much time with him alone in the last ten days. So for a few minutes, we stood in the rain alone. I think that was the other fantastic moment. Simple appreciation. Simple gratitude. Simple relief. Holding my Lemon’s hand.

Steve’s Birthday

Steve’s description: “Great!”

What an Odd/Honorable Thing to Have

We made the decision to move to Davis because of the school district. The Spanish Immersion school was the main goal for the move. Davis was on the list as a place where we could afford to live, have a good school district and Steve could travel. The idea was, down the line, I would work to find a job at UCD. It is close to my family and some of our closest friends. Paco would have a great public education and Steve would be close to the Sac airport. Carmichael just seemed too far for the drive to the airport. And then, if we wanted to, Oakland was close to move to if Steve found a job in the Bay Area. But at the time, he was working independently and traveling for work, working at home.

That was the purpose.

The payoff, whew. Incredible.

I want to spend time over the next week telling a story of someone doing something small,  but really having a huge impact. I could write all night. But tonight, I have to write about a specific honor today.

All week, fantastic abuelo Miguel has taken care of collecting Paco at school. I think I may have got him one day or delivered him, but I really don’t remember. Something about today, the weather the late release of class by Sr. Nelson just made me feel incredible.

“Abu” had gone with Steve to Reno on a day work trip. They left early. I took Paco to school, and Hoodi/Aba had taken Lemon (he only cries when I take him). This afternoon, I picked him up. Between the morning and the afternoon, I saw many of the parents that I had not yet seen this week. On the way across the street, a mom (fellow baseball mom) and I checked in. She asked where I was originally from and it turns out she was from Loomis and had been a swimmer. She is my brother’s age, 4 years older than I, so we missed the competition era. I explained that I had the chance to swim in those days, despite my slowness because I could do the 200IM and butterfly. She told me when my head was healed, she expected me at the swim master’s program. She said it a manner that felt like I was wanted in the pool. She was casual and encouraging. This is walking from our house across the street to the school.

From then on, all the people I knew simply expressed a happiness to see me. This afternoon questions about how fast I was up and walking, how awesome I looked because I had a hat on to cover the 40 stiches but was wearing pearl earrings. How much everyone wanted to put a big black dot below my ear to show the stitches as a question mark on my head. (Yes, VT tomorrow you can).

Paco’s class got out late and for ten minutes, while we waited, no one grossed out. Everyone expressed interest in the markers and laughed with me that I was forgetting words they had long forgotten. Paco got out and for 30 minutes I let him play while parent after parent came up to me and checked my head and gave me compliment after compliment. Instead of being babied or pitied, I was rooted for. No one was grossed out, demeaning or feeling sorry for me. Rather, it was being cheered on to just keep fighting away. It was simply inspirational.

I think the magical piece of the community side of Davis is that many understand what the power of good words can be. Today, one of the moms told me “’I’m glad to be in a community not only where you can count on others to help, but where everyone feels like they CAN help. we’re not alone, we’re together.”

“We all hope to deal with Big Scary Things as well as you do. it’s scary to think about, and it’s powerful to share it.” She said this. OK, wrote it. Directly. The power of a compliment.

The highlight of the afternoon was seeing my good friend VT again. I had not seen her in over a week, and between baseball and school, before surgery, I had been seeing her 5 days a week. While I was in the hospital, she and I had sent each other sarcastic, teasing texts that simply reminded me of a good world. She came up behind me with a huge hug and I felt…at home.

Too drugged

I have been working on writing for a while with saving issues. Strange, but considering the level of drug influence I have (vicodin) it is not a surprise.

Steroids

I am way too high. I just made Lemon hug everyone at temple. Sent from my iPhone

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