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December 28, 2010
…MDs to look at my MRI. The scan was today and I had one of the best naps ever. It is a newer, more powerful machine (I think it is called the 3). I have had one scan in it several months ago. But today, the entire machine shook and rocked me to sleep. Steve is amazed I can sleep through the noise. Man, how can he tune out Lemon screaming and not a relatively consistent mechanical sound?
I LOVE KAISER.
I had an unchanged MRI. The Radio-Oncologist took a look right away and the Neuro-Oncologist just e-mailed. Thanks to digital everything I went to Kaiser Morse, the Radio-Oncologist is in Rancho Cordova and the NeuroOncologist is in Redwood City. I just sent emails out at 11 AM and the Neuro-Oncologist just came back from vacation. Well, officially he returns tomorrow.
I LOVE KAISER
December 28, 2010
December 28, 2010
Do not call someone a bitch.
At least someone you do not know. Someone who does something minor. Someone who apologizes.
We never know what the life that surrounds people is. Christmas Eve at Costco, I was in line for gasoline. A guy could not decide what lane he wanted to be in. I did the double honk, then I took the spot when he did not move. He was in the left pump, I was going to the right. His wheels and the nose of his car had been pointed to the right. He had one tire out of the left lane.
I got out at the pump, and apologized to the attendant. He said, "Oh, don’t worry, you have the tank on the easy side. There are just so many cars that have the tank on the other side." After I filled up the car, and walked back to the driver’s side, the guy who did not decide which lane called me a bitch. "You’re a bitch." He said. Tommy was in his car seat behind the tinted glass, so the guy did not see him. Or chose not to make it an issue. I yelled an apology, "I am so sorry, I wasn’t sure." And he said, "You did not honk." I said, "oh, yes, I did the double beep". And he said, "You’re a bitch." As I pulled out, I regretted not just turning the situation around and giving him one of my Starbucks cards and saying, I am so sorry, please accept my apology. But with Tommy in the car, I was actually scared.
The last week, I have been too stressed out to cope well. I have not had enough exercise and I am putting too much emphasis on whether or not stocking stuffers are wrapped and what has been made. I am not hosting anyone (which is sooo much work) and I am still worried. I have an MRI next week and I won’t get the results until the week following, a holiday weekend that everyone needs and deserves.
Between arguing with Paco about this or that, or remembering too much that has to be done, or simply taking Keppra it all gives me side effects. I get sad and I become overwhelmed. During a day that everyone out is overwhelmed by trying to celebrate Christmas, being treated in any manner less than kind can sting. I was so tired that everything two close people said to me made me burst into tears. It took hours to calm down.
I want to say I have this great perspective. I think all of us do. The grumpy guy at Costco, my family, especially Shannon who last been the go there person for 3 stage/grade 4 people over 5 years have perspective. Shannon, in my worst humor 17 months ago simply said, "Are you feeling OK? You do not seem like yourself." She would have bee justified calling me the b word, but she did not. No matter how grumpy, repetitive or judgmental I have been, since Elyse died, she can walk away from a bad situation.
I wanted to march back to each grumpy soul on Christmas Eve and yell, "I have been to the end of the world (Tierra del Fuego) and I have perspective. I did yell to one "I am afraid this f___ tumor is coming back. What do you think that is like?"
What also propels the fear and sadness are having good friends deal with seizures or recurrences. It makes me feel especially and arrogantly equipped with loss, with battle, with triumph. What I have learned so much of, the last two days, has raised the value in my heart of the support group I have. I emailed the Glioma Girls Christmas night and asked for a kind ear. Anyone must be in a cave of negative at times. To me, it was 2 days ago. Sometimes you cannot reach out to witnesses, you have to reach for participants in the same cycle. All have emailed me within 48 hours. I think that is incredible. One suffered a migraine that had seizure-like effects, 2 are waiting for snow-delayed flights. I heard from all.
Here is an excerpt from Toby’s email:
I look forward to your emails whatever your mental state. I run through these different emotions all the time about all this brain tumor crap.
I am so sorry that you are having a bad day. I don’t know if your concerns about "fighting" are something that means you are having the blues necessarily. I emailed with someone who had the same type of tumor as I do and he hated when people used that term "fight" and preferred that it be referred to as "experiencing" cancer. Toward the end he wrote on his blog that he felt almost relieved that it was going to end but he was an older guy with grown up kids and grandchildren and he felt like he and his wife had traveled in the four years since his diagnosis. He blogged that he still felt like the last few months snuck up on him and felt a calm as it kept going. He used to email me with advice which I followed. He was so helpful and for that I am so grateful. He advised to exercise because it kept him going longer and gave him a better quality of life. He went off chemo when he could so that he would feel better.
I remember when I first received my diagnosis that I beat myself up over and over again thinking "what now?" I instantly wanted to turn brain tumor into something like a fight but I am not really sure what fighting means in this way. I still don’t know about the whole "experiencing cancer" thing. I also don’t want to be weak and I don’t want my family to think I just rolled over but then again it is my life and I am always telling my husband that I may make different decisions than what he would. I think he respects that. When all this started all I could think about was how I wanted my husband to remarry and not to let this ruin his and the kids’ life because it wasn’t fair and it wasn’t what I wanted. It is like that Steve Corelle movie "The Real Dan". In the movie he does find love again although it take a while of healing before that happens.
Erin, I guess I want to encourage you to do what you want to do and what you feel you can do. I do think quality of life is important and what you want is important. Steve IS such a love and your boys are beautiful and you guys have built your family together. You contribute to your family and friends even in your tough states. The tumor will do what it wants but my life has been forever changed since I came across your blog and met you. You are showing friends and family how resilience lives in people.
So if I take the cancer out of my head (irony) and trace where I have been and what I have seen, I need to remember that life is life. I am here and despite a bad day, it was one day. And tomorrow is a day I actually get to live. And I have Glioma girls to count on and whom I may share fear.
So I said no more blogging for a week. But perhaps I need to restart the break tomorrow.
December 25, 2010
They were hilarious all day. Paco was an angel. He had one small meltdown on a small amount of sleep. Otherwise, he shared everything with his little brother. We started a new tradition with fedexed in Lou Malhnati’s pizza from Chicago (Paco could not believe how good it was). And had an active moment, and a lovely quiet afternoon.
I am going to take a break from my evening blog-therapy sessions. I do love trying to write every night, but the exhaustion of Christmas season has effected me more than I would like. Much more. I did not even do Chrstimas cards, which I love doing. Last year I only got some out. The international ones, not so much.
Before the new year begins, I want to clean up more, get rid of more, exercise more this week than I have over the last 2 weeks. With the boys home, it may not be easy, but I can try.
Oh, our laugh of the day was about 10 PM, Paco woke up and came into the front hallway. He sat on a step stool and looked into the wall. He was sleepwalking. I walked him back and tucked him in. Apparently, this is quite common, and I remember my brother sleepwalking. So I take Paco’s activity as a good sign for the future.
Here begins a break. I’ll finish the new year well, and start it with a slightly cleaner plate.
See you in 2011!
PS: Sorry for all the Tom photos. But they were the funniest.
December 21, 2010
We go up and down. Different times we obsess over cancer research, death, other people’s stories. I run a lot of searches for people I met at UCSF who I hope are doing ok.
I have no idea what the clinical trial 1 year survival rate is. I know of 3 who had nasty octopus tumors and still made it over a year.
In the abstract, the challenge for others is side effects from the entire experience. My understanding is the brain cancer treatment or end is easier than other types of cancer. I think about BCG and Lucca and how miserable they both must be. They are always having to face the question of how far does one go before the misery makes life too weak, too much.
Teree’s death has continued to be a positive and negative effect. I don’t search for her any more. I have the details I needed to hear. That smile just haunts me in a good way. In July, she told me that she was thinking to walk away from another type of treatment at the end. To live longer, was not the same value as living in better comfort.
To hang around with the other Glioma women, to have them at one’s fingertips…is an incredible support system. I am sad. I won’t call anyone too late, but emails go back and forth and there is chatting. Two of them will be traveling this week and I am praying they take their laptops. We can talk discomfort or death one minute, then how misbehaved a child is the next. If any of us were to go, the other three would be overwhelmed.
The group communication seems sad and yet productive in the same moment. Toby does research about all the other people who have Gliomas. Liz does all the networking to give each of us the chance to widen our community (research too). Bea astounds to be the traveler with a toddler. Lynn is two or three months ahead. She gives me updates on the progress. She is breaking trail. I think my job has been to set the openness with all and to be vocal (to the world, to this page) about circumstances and how we all feel at different times.
At this moment, I feel sad and grateful.
December 20, 2010
I stumbled upon this tonight.
I have lived in 3 of the cities. I am 39 years old. Aside from Sacramento, Ann Arbor and San José, I lived in Vancouver for 10 months, London for 8 months, Davis for 16 months, Oakland for 2.5 years. Santa Cruz for 1 year. Those are the places I don’t have to worry about.
Over 3/4 of my life in one of the regions.
December 19, 2010
I am trying to cut down on sugar. So far, so good. Ok, there has been ice cream. But I went for the low carb ice cream. No nuts. Sigh. No nuts. I was able to eat Indian this evening. My tongue still is shredded. But today, Steve said that he could only see 4 layers of tongue, not 5.
My UK friend called today. She reminded me that her husband, who had prostate cancer, took a year for the aches and pains to go away. When you see her husband, he barely looks 50, not 60. So I’ll take him as sign of recovery.
My posts may be few this week, in preparation for next weekend and Paco home from school. There are surprises to be wrapped.
December 18, 2010
For those of you who knew me pre-tumor this should make you laugh. My straight hair is gone. I now have bed head. All the time. Someone, here in Davis, saw my driver’s license and seemed…confused. The longer, straighter, darker hair, with clear skin was indeed misleading.
On the bright side, my skin has repaired itself slowly, and scars have faded. The photos from last year were taken while I wore a ton of foundation make up. In the photo with hair, no make up.
Day by day, life can get better. My tongue is back to 5 layers showing. This is not Tarceva directly. This is permanent damage. I thought perhaps it was a Divine Power telling me to stop eating sugar or nuts. Certainly, I need to start keeping better track of what I am eating/drinking and the results.
At least I can still have coffee.
December 17, 2010
Uh Oh, (Liz Opened the Door)
The answer to Liz’s question (http://forceoferin.wordpress.com/2010/12/12/can-i-be-hostile-towards-a-pill/) is I won’t let him.
I really just don’t have a bucket list. I wish I had a few things on it. Bea and I could do it together. But I am so…fulfilled. There is little I would want to do that would not require more studying, more time (time with and without kids), more money.
Steve and I did make an agreement tonight. If a tumor were to return, we would go back to Venice, and perhaps drive the Italian Stelvio Pass. I think each of us would need our own car for that one. We would go as soon as I could drive. I want to drive. If I cannot drive, I would be a bit concerned I would throw up on Steve.
For some reason, I think Venice marks life changes in circumstance. 1997, I was there with Shan and Cindy just before I met Steve. 1999, I went with Steve and when he checked his mail the minute we were back, I found Steve’s admission to the Michigan MBA in the pile of held mail. In 2001, we returned for our honeymoon, the dollar was strong and the euro conversion was beginning. And 2005, we joined my sister and Steve’s parents for Colleen’s 40th (and the Steve’s parents’ 40th anniversary). On that trip, I could not always read Shan & Chris’s blog about Elyse, the baby with brain cancer. So I would call my mom at all hours, and she would read it to me. We returned home May 10th. May 14th , Elyse died. It seems Venice has buffered many major life changes. Good and bad.
(OK, in reminiscing with Steve, I realize it is Italy, not just Venice. After a wedding in London, we spent 3 glorious nights on the Amalfi Coast. I was pregnant with Paco).
Yesterday, I had a good visit with my new OB/GYN. She was calm. So to answer to Liz’s comment, I cannot let Steve pull his DNA out of his life. My new doctor understood this. I said, if I make it to 45, he could do it. But if, just “if”, I go sooner rather than later, I want him to be able to build a life. I do fantasize about him meeting someone close to my age, a bit younger. Someone the kids would like, and perhaps someone who wants more family. The doctor said, calmly, “that is a good approach”.
The hardest thing about making practical plans is that it can overwhelm people. People who say, “oh you will make it.” Make it to when? We can all go because of disease or accidents. Those of us who are used to loss are also used to finding the gains of life. Just because I make the occasional effort to plan ahead, does not mean that I am sure I will not make it to the five-year mark. The process of planning ahead is advantageous. It does not secure a date of death, but it takes away stress. It makes the road less bumpy for those who are left behind. To me, the road of mortality is always there, for everyone. How I choose to map it is not negative, it is simply practical.
So right now, the only thing on my Bucket List is 1) Go to Venice again with Steve. Sigh. I’ll work on number 2.