Monthly Archives: April 2011

2nd Half PET scan

The hungry part is over. I am missing a day as a baseball parent but all is good.

I see people who look depressed and wonder what is haunting them. I am still only blue about 20% of the time. I am ok with this. Denial has its place with a tumor…but I do have to face the fat. Eight years ago I lost 50 pounds. I have to find that soul again.

Time is up, 2nd half of PET to come!

The Positive Power of Facebook and Twitter.

The Positive Power of Facebook and Twitter.

I stepped outside the box. I had pulled myself off of facebook over Christmas and slowly went back on, reading the friends that I know the best. Then I kind of left it alone. When I switched to TypePad, it was so easy to click, the facebook button (I have not figured out how to do it on WordPress yet). So for now, I am posting on both blogs. The facebook connection has reawakened me. When I linked yesterday’s long post to facebook, it increased the positive messages. This time around, I actually had become braver about restarting contact with old friends. These people (particularly JB and CO) I had the pleasure of knowing well in high school. The dudes in my class were good guys. I remember very few jerks from my graduating class. Meg, who posted on the WordPress blog, was/is a strong chick.

No sugar! No coffee. No Vodka.

Tomorrow I have a PET scan. I have not heard anything from Chen or Peak today I did hear from the technician about the PET Scan (no Carbs except fruit until tomorrow after scan). She was grumpy. I joked to Steve, I may have to take them donuts so they get that I have a sense of humor (since I have to show up 6 hours food free and again, no starches or sugar!).

I don’t remember crying today. I remember being annoyed that I cannot eat what I am craving, but I am fortunate that my morning was so productive. I took Paco to school and then wrestled Lemon into the car. We went to Kaiser’s Med Secretaries office to pick up my CD to take to UCSF next week (both the MR scans, not the PET, that can wait). While waiting I met a guy (JD) whose tumor is between levels 2-3 (so always round up). But the tumor itself is inoperable. That must just suck. He, as I do, loves Chen. We spoke of the straightforwardness and trust that the doctor holds. He is just finishing up radiation and is taking Temodar. We were speaking for 20 minutes and I thought I was waiting for my CD. It turns out the Receptionist saw that our conversation was deep and supportive and she did not want to ruin it. So she just was quiet until JD had to leave. I have her a huge hug and compliments for that level of awareness and tenderness. She is so thoughtful. Getting a CD is just…easy.

I decided to splurge on a chick-fil-a shake and mmmm. When we got home, I put Lemon down for a nap and decided to leave the chores for another day and I slept. 20 minutes later the PET person called. I was too lazy to write down all the limits. But I remembered them and mentally thought, “so glad I went to chick-fil-a”. Oh man, I love ice cream, the less the sugar, the higher the fat the more I like it.

I know I should be more nervous, more on edge, but getting treated well by so many really helped. I read or heard a lot of positive words. That is hugely helpful.

Instead of drinking tonight, I took benadryl. So I am off to the world where I am not chubby and the ice cream is just waiting to be eaten. mmmmmmmmmm

I had 4 things on my to-do list. The important CD was collected. So the rest can wait.

Good News/Bad News/Good News

Denial has a good purpose. Denial is considered the first phase of grief. But sometimes, it is the best. It helps with functionality. It helps push depression away. It has its place.

Tuesday, I had an MRI come back…unclean. There is something that has emerged where the previous tumor had resided. It could be scar tissue or other damage from the Radiation therapy, or it could be the budding of a new tumor. I received the call just as Paco’s baseball game was starting. Steve was walking down the street (he is an umpire) and knew from my mannerisms (more than a block away) that it was The Call. He asked, without words, “thumbs up or thumbs down?” I gave him a thumb on its side. That is the bad news.

The good news is I sent a message, shortly after the MRI scan, to half of the primary doctors in my world. Actually, just to 2 (the primary neuro-oncologist and the radio-oncologist) to start off. The MRI was completed at 10:45AM, e-mails were sent from the car via my iPhone. By 4:45 the NeuroOncologist Scott Peak had called to deliver the news. He was pushing forward to have the Radio-Oncologist, Allen Chen, take a look. Chen emailed me by 6PM, saying he would like to chat with me on Wednesday. Shannon stepped up and took the kids away, and Steve sailed from work to meet me in Rancho Cordova. Chen had ensured a NeuroRadiologist had looked at it to confirm and they had discussed what to do next. The general consensus was a MR Spect (http://en.wikipedia.org/wiki/In_vivo_magnetic_resonance_spectroscopy) to try to determine the content that showed in the MRI. There is also a chance of surgery to figure out what is there. I also could have the choice of waiting a few weeks and take a new MRI to see if anything grew. There were these little tiny modules (Chen and La Radiólogo Mágica both mentioned them). I asked Chen if that was a sign that the tumor was returning under the construction of a traditional tumor with spiders and such. (I need to confirm this with Steve), but I believe he confirmed the possibility.

I was scheduled for the MRSpect right away and it was conducted today. I was warned by the MRI receptionist that it would be a 90-minute scan. It turns out that is a traditional MRI plus the MRSpect. But the technician said that it would be about 45 minutes. It was quieter than a regular MRI, the settings were different. It was simply easier.

Chen had also put in the order for a PET scan. This, I will have done on Saturday.

Now, don’t get me wrong, I am a mess. I am crying about 15 minutes per every four hours. I want to check into a Westin (I love the sheets) or a Ritz Carlton (never stayed in one) and watch all the sad tumor TV shows, sit around and drink vodka and cry. Steve is trying everything not to be a mess. He is setting aside everything to be with me. He is going to work late (and making sure I am ok) and leaving early, trying to juggle work issues from here. And poor Paco, he knows something is going on in my head. tried to explain that the first scan just was not complete enough, but he has had two breakdowns in as many days. There is no passing over anything with that kid.

Side Note: Anyone who knows Paco, going to Michigan over the summer, let me know. I was thinking of sending him to his grandparents to get a break of the cancer chaos. But he is not ready to fly alone.

I was in a gloomy place this morning. I walked with Lemon to Trader Joe’s. One of my usual buddies was there today. It turns out I had never told her about the tumor. I spoke with her and another cool person in the freezer section. They turned my humor around in a matter of minutes. As I was checking out, another clerk came up to me with a bouquet of flowers. Just like that.

Over the last year, I have used my 20$ budget on Starbucks or Peet’s coffee cards. Simply for people whom I see do one polite thing. The economy and modern technology has effected us all so much. A lack of civility. Today, the bouquet of flowers just astounded me. I started to choke up as I pushed Lemon out of the store. And just like that, my crappy, negative mood was gone.

Between this experience, the huge volume of kissing Lemon’s belly and hearing the corresponding laugh and having an easy MRI, my attitude has turned.

There is no way in hell that tumor will come back with out being loved to death. That stupid tumor had given me friends, deepened my marriage and made my life true. The tumor gave me the gift of consults from multiple specialists within Kaiser. Then (thanks to Steve), I will run the whole thing by Dr. Clarke at UCSF.

So yes, people can complain about any medical program. But Steve understands why I won’t leave it. We have paid COBRA for three years. (Two different programs). I just cost the Kaiser over $11,000.00. This is not counting the PET scan (between $3,000.00-6,0000.00). In three days. No questions. No denials.

Chen had a good list of future treatments. I asked him to be frank about the future, if what we saw were a fast-growing tumor, I wanted to know what that meant. If it had been closer to the brain stem, three weeks. Mine is as far away from that as can be. He then listed again, all the drugs and treatments that are available. And I said, so I have a deep arsenal. And he nodded.

We won’t know much more until next week. But for today I feel like a fighter. Denial. Anger. Bargaining. Depression. Acceptance. I think I restarted the series. I am in the Anger phase. In this stage, it is the appropriate emotion to use to scare the heck out of the evil cells.

I have to choose

Taking German vs learning about baseball. I need to learn to keep box scores

Moving Back

I click (and my mom, Shan too) better with WordPress. Man, my sister is always right about anything computer related.

Bucket List Part Two? (The Baseball/Barbara Effect)

I still like the movie The Bucket List. I like most films with Morgan Freeman. The character he played had not traveled much. When he and Jack Nicholson’s character were both given cancer death notices together they went around the world. While yes, I would love to drive everywhere with Steve, the kids…the kids are more crucial than the location key. Today, watching Lemon with my mom was just an excellent reminder of what I have enjoyed the most in life. My family. OK, wait, my family and Barbara’s obsessions. It was her obsession with Geneaology that enabled me to meet my great aunt in Oklahoma, to see where my dad’s mom grew up, to see Albuquerque, NM for the first time. If only I had been on board with Barbara’s Spanish obsession. I was late to that obsession, hence why I cannot drag her to Argentina (Clark, they have incredible steak and ice cream, can we not just make her get on a plane?).

Today, Paco had a baseball game, and just being there, watching him play, was an honor. His obsession (a la Barbara style) made him one of the most coherent players in the league. He watched the ball with every opportunity, hit the ball at every opportunity. Per Steve, he smiled the entire game. It taught me that on my Bucket List is not going to a place Paco has been before (I know he will drag Lemon to BA or Venice whenever he can). No, it is to simply spend time showing them simple joys. I found this book, Frommer’s 100 Places to Take Your Kids Before They Grow Up. The first listed (after the Grand Canyon) was the giant Redwoods. That would be a good trip to put on the list.

I have to admit my current travel fantasy is to fly into Amsterdam and drive up to southern Denmark. There is something about surprising Paco with the joys of Lego HQ. Those boys fight about legos every day. It is his obsession. When he is older, I think Cooperstown (baseball Hall of Fame) will do. (I know Brandon will take Beckett, so I have faith Bdub will take care of this)

Life is so…Normal?

I think I am going through some strange spacey era. I am not concentrating well. My body was in a substantial amount of pain. I just took the good pain relievers and I am definitely spacey from that. Don’t worry, to me, it is not as bad as the incontinence I had while taking Tarceva.

But it truly makes me admire anyone who has consistent pain. Judy with her foot surgery, has been trying to walk around the block on nice weather days. One of my cousins had burrs (or has) burrs in her back and still manages to gingerly exercise. My mom will show up wearing her boot cast because an old injury flared up. Chronic pain. Yuck.

I has been almost 8 months since I stopped taking the drug cocktail. People, who have gone through other types of treatment, say it takes about a year to get back to normal. Yea, I suppose that is true. But more so because I am way too excited to put Lemon in preschool. I love that child and he is incredible medicine. He is the reason Avastin was not as hard on me as it is on others.

Children. The most amount of work, the most incredible pay anyone can get.

No Fear

Someone said that they could not understand my posts the last week. Upon re-reading them, I realized that the wording is too vernacular, too informal. I need to write less to my cousins (John and Tom, most specifically) and Shannon and Bea, and more to a place where I am unknown. So I will try to be clearer. (This will be a winding path for me).

The same person spoke of being approached by a friend who expressed concern about my fear of death. At that point, I was completely confused.

Then I realized. I simply need to be clearer.

My dad stopped walking in 1989. He stopped driving in 1988. He started falling down before this. He had a disease that did not change his thoughts, but his orientation. I was in high school. Colleen and Brandon in college or just out. I have no fear of death, I have a fear of the damage leaving in 10 years, when Paco is 17 and Lemon 12 could do. Because the older I get, the more I realize the powerful effect a fading parent has on the children. The effect is there, regardless of age, but the 3 of us were all at an age of building an adult life. The last time I remember him laughing was at Colleen’s graduation party, here in Davis. There is a photo of my dad and he is just laughing hysterically. I must have been about 16. After this era, this poor man was stuck. Unable to go for a walk or read print or teach (thanks to my mom, and a great student assistant, he was able to teach for a couple of additional years). Unable to drive. Unable to make his famous meatballs. Thankfully, this is not my future.

I do not want to Paco to be 16 when I go into a coma. I watched him deal with a move, a little brother and my tumor all the the course of 5 months. I do not want to put that on him again. He is a wise, observant child whom you cannot get too much mystery past. I went through less, at an older age and I did not handle it well. When I had enough confidence, I left the country, twice, to get away. I missed a family wedding (which goes against every grain in my body) to get away. I left Colleen with the bulk of the sibling duties.

I did not go through much compared to others. There are lists and lists of situations that would be worse. But still, as a parent, a fortunate parent, I want to protect my children from heartbreak. I could be the worst mother in the world, and they could still be sad.

I have no fear of death. I have a fear of the effect on Steve. The volume of laundry, the organizing of working and balancing the kids, not having time for himself. I worry about the exhaustion that will put on his parents. They would work hard to balance their lives and help Steve as much as possible. They would be exhausted. I worry about Shannon, who in the last 6 years has lost a parent and a child. We talk every weekday for at least 20 minutes.

I do believe in a positive afterlife. I believe I will get to be with my dad and my first pet. I would get to meet my maternal grandfather, who died in 1964. And if that is not true, if there is no afterlife, I won’t be conscious to regret the hope of seeing my dad again.

The difference is, that I make a difference. Because I am not afraid, the doctors are frank. Bea can be frank. Shannon has no fear in talking to me about Elyse (http://babyelyse.blogspot.com/). We can help each other. This is what it is to be unafraid.

I have met seven people with Glioblastoma at UCSF. I know for sure that three have passed away. I know for sure three of us are still alive and doing well. So I simply cannot leave the world that I have entered. Again, I am unafraid of death, but it is a reality.

Denial, Anger, Bargaining, Depression, Acceptance. I will, for a long time, vacillate between the last two phases of Death and Dying. I can choose to accept it and concentrate on the rest of my health, drop the weight and move on from the place of treatment to the place of balancing the MRIs with building a regular life. This is reality. This is taking Keppra every day. This is doing my best to not let changes in the future (changing priorities) push me in an unproductive direction.

As I have said before; this page is therapy. Good therapy.

The best therapy is keeping my eye on the prize. Today, one of Paco’s mentors expressed amazement at his athletic ability. I am sorry, but compliments for my kid give me strong joy. And then Paco wanted to be sandwiched between Steve and me tonight (we usually say yes if we are sleeping already). I asked Paco if the laptop would bother him. No, he slept.

So I am unafraid of death. But I admit it, I like my life. And I will fight to stay in it.

Message from the Superintendent

I had to post this. I think this is why we moved to Davis.

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Spring introduces the final quarter of the 2010-11 school year, and we find ourselves in full academic stride. Our school sites have entered the testing season and we are confident that our students are well prepared to demonstrate their learning. While state assessments do not and cannot measure the many elements that make DJUSD a great district, our community reaps the benefits when all students take the exam and do their best. An academic performance index of 800 is the goal for California schools; all Davis schools exceed that goal.

Concerning the budget, our state legislators’ indecisiveness over the funding of public education is placing an undue burden on all California districts. This indecision limits our ability to implement plans for 2011-12. It is difficult for us to make fiscal commitments with so many budgetary uncertainties looming. We urge Sacramento decision makers to pass a budget that does not continue to harm our children. In the meantime, we will carefully follow what happens in Sacramento and use fiscal prudence in our day-to-day operations.

Even though the state continues to take resources from public schools, DJUSD teachers and students are raising the bar for academic excellence. An example is found in the students, staff and parents at Birch Lane Elementary. Currently, Birch Lane students are receiving national praise for challenging a NY Times editorial that claimed picture books were no longer relevant or valued in school. The students at Birch Lane responded by reading nearly five thousand books in a month’s span. This is an accomplishment that the entire community can relish.

Last year, former Superintendent Hammond commissioned a homework committee made up of teachers, parents, and administrators to draft a policy that would help students live balanced lives. As we approach the end of the year, we plan to regroup with parents, teachers, students, administrators and former homework committee members to draft a feedback survey of our homework policy. Those interested in being a part of this committee, or who would like more information about the process should contact Assistant Superintendent Clark Bryant, in Instructional Services. It is our goal to implement practices that are student centered.

In tough economic times, families draw close together to protect what is dear to them. As we witness our community rally around its schools and students, it is quite apparent that Davis is a family. I am proud of everyone’s efforts to keep DJUSD schools striving towards excellence in these challenging times. Our Board of Trustees, administrators, teachers, classified staff, parents and community partners all demonstrate that a first-rate education for all students is valued in Davis.

Thanks for your unwavering advocacy for our students and schools.

Regards,

Winfred B. Roberson, Jr.
Superintendent

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(530) 757-5300 ext. 142

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Today, I am moving:

http://www.thismomfights.com

I am testing out different blog providers to see which fits the best. I am accepting this great location for therapy and sharing to in my life forever. So colors and tabs may change, but I hope http://www.thismomfights.com is around for a long time.

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