BATMOM

Displaced Newt

I am slowly regaining energy and strength and feel that my brain is becoming my friend again. I'm not so terrified to think the dark thoughts that are real and constant and ever-present. I am getting better at voicing those fears, acknowledging their existence, and then staring them down and inviting them them leave.

I have found that if I allow myself the thoughts (and don't run and hide from them) then I have some control. Thoughts aren't reality. Fears aren't fact. If I voice my worst fears, I am able to pull them in perspective, loosen their power over me, and begin to find my optimism. It's a practice... a work in progress... I get better at it the more I do it.

Tom and I have started our cancer support groups again (his for the caregiver and me, the patient). Our groups are next door to each other. I can sometimes hear him through the wall, and I know he hears me (my laugh is loud, and we do laugh). I  was in need of a community where there is sympathy but no time for dwelling on it. We tell our sad stories like AA introductions. "I'm Renee. I have stage 4 colon cancer which has spread to my liver. I was diagnosed in 2008." No one cries at the introduction. These are the facts. Crying comes when the patients talk of their spouses, children, caretakers  coping (children, caregivers) with our illness. 

We are awaiting some genetic test results to find out what the next plan on action is.  Is there another chemo option? Is there a clinical trial? Do I have liver surgery before or after chemo?  I have another scan at the beginning of April which will help determine the next step. We leave for Australia days later for my sister Juliet's wedding, the prospect of which makes the whole family excited. 

The kids are doing well despite our anxiety. Tom and I went on a field trip with Cole's class this week. I am trying to get out more... walk more... We took a long walk through Tilden Park with a determined park ranger, 16 4 and 5 year olds, and a displaced newt. 

 

Civil

I ventured out in the world today to accompany Adeline on her pre-school classes' field trip to the Mocha Children's Arts Museum. My mom drove and herded children. I got to sit back and enjoy as Adeline explained the finer points of Beach Boys' lyrics (Bom-Bom-dipty-dip) to 4 other 3 year old girls (two of whom are native French speakers).  

It was also the day that Cole was required to bring in 100 of something for his 100th day of Kindergarten. Despite my best efforts to dissuade him, he chose to bring 100 stuffed animals. We rounded up every last plush toy in our house (including ones I'd moved to the garage at Christmas time), exempting George and Adeline favorites, but we were still far short.  I brought out the musical Christmas toys. I pulled out the childhood animals of immortal status that neither Tom nor I have been able to ever give away (for which our children don't really care... not one can still be called plush).   I  even called Grandma. She scoured her  supplies and sent over as many she could find. After a final inspection, and a decisive rejection of a pink poodle and small doll in a red skirt, Cole went to school with two large garbage bags and 97 stuffed animals.

The word is he dumped them in the reading corner with his teacher's permission and dove in amongst then. Classmates followed suit, frolicking with a stuffed Darth Vader and a Jingle Bell singing cow. Bliss.

I had lunch out with my mom, but was back home by 1:30PM for a nap (how civil).  

George and Tom came home late due to baseball practice (Tom's a coach for the team). And after dinner, homework, and piano practice, the night is gone. "When do I just have time to read?" George yelled last week in frustration. He's been the most aware of what is going on with me because he listens closely to everyone. 

Now that the pain isn't so severe, and I'm not ruled by a constant stream of doctor's visits, I feel that I might be in a bit of denial. I guess the best thing to do is enjoy it while it lasts. 

Back in the Fight

Well, it was nice while it lasted... The reprieve from cancer. 

Three weeks ago, I had a routine CT scan that showed 2 problem areas. One in the pelvis and a few small spots in the liver. We were immediately thrown into the whirlwind of PT/CT scans, blood tests, and my first MRI (yipee). 

My needle phobia came back with a vengeance, and I found myself on the phone with hypnotists and counselors, who had lengthy advice but no availability.

The more extensive tests showed that there was indeed cancer everywhere they suspected. I would require a pelvic surgery, a liver surgery, chemo, and perhaps radiation. One week later, before I could grasp it all (not that I really wanted to), I woke up from a 14-hour surgery with another compressed nerve in my leg and tubes come out of me from every which way.  I felt like that evil dude from Spiderman who highjacks all the electricity through his tentacles.

I am told that the surgery was a great success. They got the cancer with wide margins (surgeons are about as obsessed with margins as tenth grade English teachers) and no sign of cancer in the lymph nodes. Excellent. 

They had thought I would be in the hospital for 7-10 days,  I got to go home after  5 days for good behavior. Thank goodness. The kids were losing it at home. Memories, I think, were resurfacing, and Tom and my mom were having a hard time dividing their energy between me and the kids while trying to deal with all the emotions gone haywire.

The children want me to be better faster, but are glad that I am at least here, even if I still harp on them about their table manners... (Does it even help? The harping?).

I am still trying to take it easy and follow the doctors orders. I have always tried to do too much. I'm wired with a  lot of energy. But my dad said something after he was recovering from a double hip replacement... he said that if you take it slow and steady, following the doctor's advice instead of attempting to cut corners, you're taking better care of yourself which is ultimately better for everyone. I'm trying to follow his advice. I'm walking every day, doing piano practice with the kids, but resting and  sleeping... I'm not worrying about meals or cleaning or picking up the kids. I'm lucky enough to be surrounded with loved ones and friends who make this possible. My mother has been amazing.

Right now my goal is to heal from the surgery. If I think beyond that, I get terrified and overwhelmed. Fear is ever-present, Tom and I take turns freaking out and being calm. We count on the words from my oncologist that every spot of cancer is still removable. The bastard is back but I am still curable. I have every intention of getting it out for good this time and moving on. Wish us luck.

 

ALL CLEAR

I have taken a big breather from the Batmom blog as you know. I appreciate all of your emails and love your enthusiasm. I do not plan to turn Batmom back into a daily blog at this time, but will post updates from time to time. 

Last month on the day after Cole's fifth birthday (Oct. 4), I had a CT scan. Tom and I were very nervous as I have never had a second clear scan. We did a lot of bickering and hugging and avoiding, but celebrated when we got the ALL CLEAR report from Dr. Warren. Every time the scan is clear, the chance of having the cancer return decreases. 

I'll do the scans every 4 months for 5 years. We have a long way to go, but taking one day at a time is something I have been forced to appreciate. 

I look at Adeline, now 3 and 1/2, and still cry for the time missed. Only 9 months old when the cancer was discovered, she has spent formative years with a mother who was only partially present. While I knew I had to take the treatment that gave me less than 50% odds of being around to take them to school, I could not always take them to school during the treatments. I did the best I could and, yes, family and friends rallied so well that Adeline, Cole, and George always felt a bubble of love protecting them. And Tom more than made up for my failings. He gathered the 3 in his arms and, like a warrior, protected them from the elements as best he could.

It is not that Adeline was more effected by the trauma than everyone else. That's not why I first think of her when I look back. It's that she and I were still joined when the news hit. She still thought that she was a part of my body. I carried her against my chest as I went about my daily business. Her music was my heartbeat. And within days and surgery, I could no longer carry her. I was forced away from her during my time at the hospital and when I was back and did hold her, my seemingly weak body leaked fear. Could she depend on this person? This mom? Adeline learned early and fast that she needed to be strong. And she is. 

Interestingly, both Adeline and George are testing me now. I am strong again myself and they push to make sure I am someone on which to depend. George is free to get mad at me now, not worrying he will hurt my body or my feelings. Adeline gets angry and then really wants a hug and to be held close enough to once again feel that heartbeat.

I think Cole expressed himself emotionally along the way. If he was worried, he buried himself under the blankets with me at the time. He's humming along right now, feeling the fog of the last 3 years begin to rise. He doesn't wear one super hero costume anymore, he wears 5 or more at once. I guess he's become super powerful!

George is seeking autonomy in his 6 year old life. He wants to do everything and know everything. For George, knowledge is power. He grilled us on Santa Claus and super heroes and the Easter Bunny. He promises not to tell his brother and sister that these "people" don't exist (unfortunately he tells us this in a very loud whisper!).  He's really discovered reading to himself and I must admit, though the car is quiet, I miss his questions and ruminations. 

Adeline keeps up with her brothers for the most part. She claims to speak French (though she has been at the French school for less than 2.5 months), play piano (never having had a lesson), and read. And knowing Adeline, it may all be true quite soon! 

 

Ambiguity

U.S.A.! Hoorah Landon Donovan! Yes... we were up at 7 AM (okay 7:31 for me) watching the US beat Algeria. They finally scored 92 minutes into the game and around 2 minutes before it ended. 

As I just set up the link to Landon Donovan, I stopped to reflect on how much this blog has changed over these past years. And I'm unsure of what it will become. 

I am settling into life without cancer. My chick-fluffed head and new wrinkles are the only real clues of the endured ordeal. Tom and I have been trying to find our new balance now that I have energy. The systems and routines have been created around the understanding that every routine is temporary (until I get better). And now that I am, we really have to rethink those patterns. 

Adeline dropped my cell phone, and now I can hear it ring but cannot answer it. The screen is white. My computer is fixed now (a dislodged battery. whew.), but I am out of the practice of checking my email and so haven't. The boys have been in the park behind the house doing tennis and swimming lessons with a few friends. Two high school neighbors have been entertaining them in between lessons. I can hear them all splashing and enjoying from the house... the sounds of summer... I love being close enough to hear those sounds of new found freedom.

Meanwhile Tom and I have been working on systems. We've cleaned out every room in the house and reorganized. It was long overdue. Our goal was to finish by the time we leave for Tahoe (this weekend), so that when we come back we can get down to writing and editing sans clutter. It's symbolic, too. We're starting fresh and cancer-free: things are different this time. 

The kids are really believing that this cancer business might be done. Each one has asked more questions of me regarding cancer during these past 2 weeks than during the entire 3 years I was fighting it. Adeline wanted to know what they cut out exactly. Cole wanted to know the name of what made me sick. George wanted to tell me that he had been right... mine was not the kind of cancer you died from. I guess he was right. 

So here I am trying to get back into the flow and enjoying the ambiguity of it all. I don't need to know what the balance is, what the blog is, what the exact systems are... They are all a work in progress and will remain happily so. 

Sunscreen

I just paid $19.99 for a small tube of sunscreen that will last perhaps a week in Tahoe. After the Environmental Working Group study came out showing that only 8% of sunscreens actually work (they keep you from getting sunburnt but do not protect from UVA and UVB rays) and 41% are loaded with some unpleasant, potential cancer-causing agents, Tom and I committed to only using safe sun screen. But $20 a tube? 

The list of sunscreens that they recommend is HERE.

If you find one of these for a decent price... please pass on the information!

I have found Badger's 30+ at www.gear.camping.com for $13. 

Update: found KidsSport for $9.99 at Berkeley Bowl! Very exciting!

Lounging...

The boys began summer break this week, and I'm feeling the summer fever myself. We're doing a lot of lounging on the lawn and jumping in the pool... and not much more. I have spent most of my energy (when I have had it) fitting in everything that I can in an attempt to have a future. And now that I have that future, I feel safe enough to slow down and lounge. 

Entries may be sporadic for a spell. This lounging business is very time consuming!

Shakescene

There was more great news this week. My littlest sister Juliet (also the tallest sister) became engaged to Harry Alabaster! When my kids found out they screamed (well, George did), "Aunt Juliet is going to marry Harry Potter!" To which Harry replied, "I am never going to live up to their expectations."

Over the weekend, we produced a Shakescene. Shakescene is the first known reference to Shakespeare... a critic made fun and ridiculed the man by calling him "this shakescene." Back in the days of Transparent Theater (pre-children), we took our actors up to Mendocino County and produced a staged reading in the woods and rocks and waters of Covelo. This year we did it in Berkleley in the park behind our house. 

It was a fundraiser for our children's school Ecole Bilingue de Berkeley and had about 200 guests. We feasted on wild-fennel and lavender-marinated 125 lb pig, herbed potatoes, local wine, and every kind of decadent dessert known to French cuisine (or so it seemed). Families placed themselves on the lawn after a swim and watched a shortened version of A MIDSUMMER NIGHT'S DREAM as the sun set behind them.

Some Ecole Bilingue 6th and 7th graders and English and drama teachers joined the assembled cast and crew. Tom directed and acted. I did costumes and produced (oh, yes, and marinated the pig to whom we gave thanks before we did so). Friends made dessert, gave clothes off their back, wired bottles, cleaned platters, carried watermelon, carried trash cans, built a roasting space for a large beast and roasted it, you get the picture. The result was, I think, what happens when a village comes together with all of its talents. It was beautiful. A magical evening.

 The scene:

 

The play:

 

 

 

 

 

 
 
 
 
 
 

 
   

 

 

 

 
 
   

 

 
 
 
  

 

 

 

 

  

 

 

 
 

 

And Puck ends the play!

 

Thanks for the comments. I feel like you're my team and I just got my jersey.... OKay, okay, I'm really bad with the sports' analogies.

4 fairies wings are completed with the help of some champagne corks, old CDs, ribbon, and a little diet coke (seriously those cans have shrunk since I used to drink that stuff).

... To sleep mere mortal...

Still beaming.... and working on costumes for this weekend's Shakescene (outdoor Shakespeare). Who knew an aluminum ball could look so classy ;-)