BATMOM

Ghost Party

Cole and I are sitting in the car outside a takeaway Japanese store. Tom and George, Babu and Adeline are inside getting dinner.

The key to the Supermobile was lost and then found as the Babu and the boys got post-school snacks. George missed Mandarin class, and the library books are now late.

I thought that I would write this blog today during my six hours in the Batcave, but the first day of chemotherapy brought well-intentioned social workers, condescending nutritionists with Gerber grins, overworked nurses and pregnant doctors (well, one). I had them all in a tizzy because I thought I was supposed to get an additional drug 5FU and take a pump home. I still might, but no pump this week.

Tom was unable to come. He has a terrible case of Poison Oak, which has caused his eyes to swell up so that, at first, he could hardly see. He hates pulling up a chair two feet from me and watching me be infused, but he comes if I need him.

Oddly, I felt I could handle it. Even the much-lived port poke. Mom offered to come and stayed dutifully by my side. I even let her leave me alone to pick the boys up from school (though I do suppose they did need to be picked up).

With no class from which to race home, we ate our dinner early (looking over the platter they yelled for "pink" and "striped".) Cole, who was excused first, and Adeline, who was not excused at all, ran upstairs. They then descended with fresh, clean mattress covers on top of them hollowing like ghosts. "I'm a good ghost," Adeline said, pulling the mattress cover to the side to see the stairs. "I'm a bad one," laughed Cole. And ran to scare me.

I did a fake scream. He struggled to take his cover off and handed me a cowboy boot. "I'm actually a good ghost." "Whew," I said. "What's with the boot?" I picked it up and pretended to look in... "Is there a ghost in there?" I asked spookily. "No," answered Cole. "There are green beans," and poured them out. Actually they were edamame. And there were three.

"It's a ghost party!" he laughed. "Hooray," said Tom. "Hooray," said Babu. "Can I be excuse?" asked Adeline.

Thanksgiving

Happy Thanksgiving everyone. 

If you had peeked in on our household at 11:15 am this morning, you would have seen me in my bathrobe and Cole's Cool Cat hat (Cole asked which costume I would wear, and the hat was the only thing that would fit). I was running a bath. Rubbing on lavender salt. Taking off toe nail polish (a fashion blog person asked to take a close up picture of my shoes yesterday and as she zoomed in, I realized that my nails were, well, unattended, shall we say). 

You might have seen Tom reading the newspaper or watching the football game. Or Mom quietly cooking a lemon pie in the kitchen. 

And if you watched for only 5 minutes, you might have thought that this was a luxurious life. But if you watched for 6 minutes, you would find that Tom's newspaper got ripped into shreds (or was that yesterday?). Or that I stopped my bath to rescue Adeline kitty from the tigers and in the process discovered the 1000+ summer photos that Cole lovingly spread particularly over our couch, piano, floor and table. Or that Babu raced upstairs to build a rocket "with" Cole and Adeline on the floor of Cole's room to console a crying Adeline.

The kids ran around the house in their red, orange and pink turkey costumes, ripping off their wings and "gobbling." It was a full day of turkey pleasure with a feast at Grandma and Poppy's house as well as a variety show in which both grandma's ended up on the floor (one as a fish and the other as Donny O'Connor in Singin' in the Rain's "Make 'em Laugh"). 

I have felt as if I am strangely vibrating throughout the last two days. Yesterday I became keenly aware that I have 4 days left before chemo changes my life again, and every second counts. I celebrated my four days by forgetting my heart echo appointment and feeling dizzy. 

I also learned that a friend, an EB parent, and fellow cancer warrior died this morning. We never met in person but supported and encouraged each other through emails and our blogs. Tonight, sitting on the sofa's at Grandma and Poppy's house, as Tom taught George to pretend to pass a rubber frog from one ear through his brain to the other ear, I got teary. What will her three children miss because she is gone? 

I said goodbye to Linda while looking out over the Bay from the safety of my kitchen. I felt the smallness and the greatness of a human. Today I am thankful to be here and sharing this day with my beautiful family. 

Late

I I only have 14 minutes to write a blog. I told Tom I would be in bed with the lights out by 10PM (so I really have 10ish). I hurriedly tried to complete George's requested turkey costume for tomorrow as well as Adeline and Cole's.... because if he has one, they'll want one, too. They're not finished but at least pinned. Nothing fancy. Old ripped up shirts and material on the back of colored t-shirts. Adeline's of course is pink.

It was Grandparent's Day at EB today. Grandma, Poppy, Babu, Adeline, Tom and I all came to "see" Cole and George sing in a stuffed, hot auditorium. Adeline couldn't see George (none of us could), so she made me sneak up closer on the floor. Cole spotted all of us separately and happily waved. Mom gave a speech for the school which was funny and went well.

Tom and I went from GP Day to our support groups. I strangely looked forward to it. The group is truly a slice of America. There are different levels of education, income levels, and upbringing. 2 of the 10 of us have no insurance and get free treatment at County Hospital. 1 of the 10 cannot afford her Cobra and is getting ready to ditch it for county. My insurance caps at $75,000 which is as good as not having insurance with cancer. 2 of the women are single mothers. 1 man has no one. 

Our "American" attitude towards our health care system makes me insane. 3 out of 10 people are depending on high cost (the highest?) programs paid for by our taxes -- directly to the hospital. They cannot work. 2 of them are dying.  How can anyone who has seen what cancer does to a family NOT support health care reform and a public option? WHY would we not use a more cost-effective method for covering these people and allow them some peace of mind as they die? Its inhuman.

I'm mad. And I'm late. 2 minutes.

Sad Song

I feel that I am right now living the illusion of a normal life. I am loving that illusion. I don't know how that is possible with port discomfort, upcoming chemo and mood swings, but it seems that it will go on being normal for a long time to come. Of course that's not true. But it's delicious right now... Even a certain little girl's terrible-two tantrums when her blanket doesn't rest on her feet just right.

George has been trying to figure out anger. He gets mad and stomps his foot or hits a wall. Yesterday he got mad just as he began piano practice. "Why don't you start with one of your own compositions?" He pounded the keys and looked up at me sheepishly. "Is that a new piece? A mad piece?" He played a few keys again and told me it was a sad song.  He began to make a song. I wrote down the notes as he played, which is our routine. Usually, he stops and checks my work and then continues, but tonight he was absorbed. He finished and looked up at me, "I can't remember it all." "I wrote it down," I said. It was the first song he wrote that he has not been able to remember after writing it. He used the notations I wrote down and replayed it. It was in the key of a minor. I asked him if there were any words. All of his songs have had words. "No."

It was empowering for him to turn his anger into something other than stomping or yelling. He felt better. I felt better. And it was a beautiful song.

As both Tom and I, separately, left Cole's room, he called out in a sweet voice with his feet over his head on the wall "Momma" ("Daddy"), I love you ever." "I love you, too." Boy do I ever. They whine. They yell. They fight. But they rock!

Hurdle: port

I got the port in. They wanted to make another incision and add another scar to my chest, but the doctor was willing to entertain the possibility of going in the same old wound... he went to talk with his colleagues about it. He came back a few minutes later and informed me that most of his patients are old so the doctors don't worry too much about more scars. He was honest, but didn't seem too troubled by what he said. In other words, why would old folks care if they had more holes and scars in their bodies... they're old anyway? It was a glimpse of what I see everyday in the medical world... the distance the doctor has from his or her patients.

It all went well. It went very well in fact, except for the trip that began the morning. We were late leaving the house and I ran down the stairs to get the newspaper. I made faces at the kids in the window on the way down, and they stood on their chairs and watched and waved as long as they could. I was trying to memorize the three of them peeking out of the window. I thought I would make the picture of them my visual for the IV procedure. As I was trying to memorize (which is completely impossible with a person you love... they are so much more than their physical makeup), I was walking backwards and looking up at them. I tripped over a garden bed rock, flipped over, I mean feet straight up in the air, and then rolled all the way down the wet, cold hill. 

Like a car accident, everything slowed down on my roll down the hill. I worried that the kids saw the fall and would be worried. I was worried that the kids would then run outside with no shoes on. I was worried that if they did that, they would catch cold. And as they were catching a cold, their insistence on more rounds of hugs and kisses would make us even more late than we already were. I was also worried about deer poop. The deer run up the stairs from Arlington Avenue, eat all of the roses they can reach and thank us by pooping on our grass. Beyond that, I was simply embarrassed. Not to mention, I was really, really wet and had been cold to begin with. 

The kids, it turns out, did not see me. I was out of view as I fell. But a timely Tom was annoyed at being late (he had been waiting with the car in neutral and wondering how a quick grab of the newspaper could take so long), and he came to tell me so. He discovered me, clutching the paper and hunched over, wet, mad. Back in the car, he asked, "If we had a video of you falling, would it be hilarious?" I said, "No." 

Twenty minutes later he dropped me off at Alta Bates hospital But then he had to drive quickly back to the house because I'd forgotten my must needed Xanax. It was the first time I took the time to thoroughly read the Patient's Rights documents they give me at every hospital visit. I took great pains to recall every medicine's name and dosage. I even read the Chronicle newspaper secretly behind my clipboard... I did not want to go down to the basement (where the procedure happens) without either Tom or my Xanax.

The nurses I had were great. I told the first about the phobia, and she used the IV spot I suggested. My Xanax had also begun to take effect, and I was a tad bit more relaxed. The IV was in with no problems and no pain. The nurse upstairs heard me about my last port installation and lack of appropriate medication and made adjustments. I remember them scrubbing this time, but nothing else. Phew. 

Even in recovery I felt well cared for, and Tom was there when I was waking up. I usually wake up and start harassing them to get him. 

That was my first major hurdle, and I did it. There are more for sure, but I've found my strength again. And I just admitted to Tom, when he asked again, that yes, if we had the video it would be freakin' hilarious.

Houchian

I had hypnotherapy today. It was strange and a little unnerving (the lack of control), but I liked the woman and I think it really helped. I feel a shift... I'm still processing... I feel very good about my decision to go ahead. I am ready. The hypnotherapist told me, in passing as I gathered my things to leave, "The healing is working for you. Your future is good."  She was confident. And, although her task was helping me with my needles phobia, I believed her. It felt nice to feel confident in health again.

Tonight, Tom and I went to a Beaujolais night at our children's school. It's nice to have a community that likes to dance. The dance floor was packed, and it was good to let loose. Before we left, George asked Tom what was after space ("after all the afters" is how he put it very eloquently) and how did the scientists know what color the dinosaurs were if they only found white bones. And also, do you have hair on your chest because you are still part monkey? Tom began to explain that he will grow hair on his chest too when he's a man, "That's just how we're built..." Built?" George laughed, having caught Tom using old religious-inspired language. George then went with the idea, cracking himself up... "Actually, Dad, people were built... by a Chinese man with red hair named Houchian!" George created the character of Houchian. He puts on a red wig and runs around singing punk music. Now Houchian has built people. Tom said George's recipe included chocolate and burnt grass for hair and something about bubble bath for the eyes. Pretty cool for a punk.

Appointments

So I made my appointment for port installation and the first blast of chemo. I have my port installed on Monday. And chemo begins on Nov. 30. I had to stop and recall why I wasn't going ahead which means I must be feeling better.

I see a hypnotist tomorrow... I am fully expecting the chain watch and turbin. I am also seeing the woman who helps me with visualizations. I am getting armed.

Tom and I also joined support groups. He is with the care giver group and I am with the participants. It was obviously intense. The group has been together for awhile, and I was like an adopted member of the family. I told them of my IV phobia, and they all began to tell me their horror stories (and they are awful). I had to hide under my jacket. I don't understand why they didn't hear me. Or stop when I hid. 

I think that the group is a safe place to bring all the pain without censorship, and as such, my phobia opened doors to other people's experiences. Also, in a room full of mostly terminal cancer patients, fear is a base line. Of course I'm scared. We're all scared. But you march through the fear (or push it aside) and do what you have to do. They gave me tips and methods to get through the IV experience. 

I felt elation from the other members when they learned that I could have my liver spot ablated. It is a strange thing to have someone who has no option excited that you do. I was elated along with them but then realized the implication. One woman is "preparing." She is writing a journal to her teenaged daughter and completing the baby book she'd never done. 

I know this group will be tough. We meet weekly. I could look for a group that has people in a position closer to my own, but the time suits Tom and me. We don't miss time with the kids when we go. And the group the way it is... is freeing in a way. As with the IV phobia, it is easier to put everything into perspective with people have no room to bullshit. I have options to ensure my future with my family and a little needle is not going to stand between me and that future. 

PINK

Adeline decided today that she was ready to be a big girl. We told her that when she was ready she would give up her pacifier and get a big girl gift. I asked her what gift she thought it would be. She told me that it would be a "girl" party. "What's a girl party?" I asked. "It's pink," she said, "With a pink cake." 

Tom and I have tried to explain to the kids that all colors are open to them. Cole was embarrassed one day at school by his once-loved pink kitty boots. "Pink is a girl color," he was told. He came home upset, and asked his Daddy at dinner, "Do you like pink?" Tom told him that he did like pink and even once wanted to paint his room pink and black (his parents allowed pink trim but drew the line at black walls). The next morning Cole happily wore his boots to school again, armed with such replies as, "Open your mind, man," thanks to Tom. It was interesting that Cole was prepared to weather ridicule as long as he knew that boys not wearing pink was NOT one of those weird grown-up rules that he didn't understand. 

On the other hand, Adeline has happily embraced pink. She's had few encounters with princesses and many more with super heroes and the power rangers. Her brothers told her she was the pink power ranger. Amusingly enough, the pink power ranger costumes she chooses are fluffy, pink princess dresses. But pink is special for her. She has tuned in to society's idea that this is her color. Instead of being stuck with it, she is empowered. She is different than her brothers and embraces the difference. 

Suddenly pink is cool. We all enjoyed tonight's pink party with its delicious pink cake and its awesome pink power ranger big girl. 

Soft and Hard

I attempted to get some necessary errands done this morning, but went down to the office to fix one paragraph that was bugging me and stayed for 4 more hours. So the packages are still not mailed or the useless meat thermometer returned, but I really like what I am working on.

I am in a place right now where I can write, write, write. I might be writing so much because I know that the chemo will shut me up for a long while. I might be so terrified of chemo because I want to use this energy on the book while I have it... who knows.

Tom says that if I'm going to do the chemo, let's go full steam ahead. Let's deal with the needle phobia, which after all is dealable, and get this done. Perhaps a hypnotist? That talk makes my veins hurt. 

I watched the boys at karate this afternoon. They kicked, punched, head butted and tackled styrofoam cylinders. When they tackled, their entire boy bodies flew up into the air. They seemed so light. George loved it. He was alert and confidant. 

The instructor asked them to land hard or soft punches on the foam depending on what he called. George looked at the instructor's face preparing himself to carry out the command. Cole also looked at the instructor's face, but he reflected the instructor's expression back before he executed the command. When Cole had his own turn to call "hard" or "soft" (as all the kids get to do twice), he yelled first, "Hard AND soft!" and the second time, "Slow!" "Slow?" asked the instructor who is very patient. "Yes, slow," and Cole demonstrated. He demonstrated a soft punch but slowly getting to it which made us all realize that the kids slowed down when they were "softly" punching. The instructor laughed, "Alright. Slow!" 

Waiting

George threw up several times last night. I felt sick myself and so the two of us stayed home today padding about in our pajamas and slippers. He spent 5 hours building a big lego kit his Grandma ordered. I did editing on the couch in the next room. We each snacked on individual packages of goldfish because that's all either of us could manage to find in the house. I was supposed to go shopping. I have no idea how we got goldfish. Great Goldfish God?

I keep coming up with a port implant plan, but can't actually seem to make the appointment. I'm guessing I am not ready. Still... we're in the world of cancer and chemo now, and I'm only extending its rule over our lives by waiting. 

We had a really nice day in Marshall with friends and kids on Saturday. Water is healing. Sunshine is healing. Beauty is healing. Cole wasn't feeling particularly social and stayed inside playing while the other kids found dead crabs, little crabs, big crabs and a large purple crystal(?). He did, however, end up naked and wrapped in a blanket next to Yann on the deck lounge chair. It's a coveted spot, and I'm guessing Cole thought, "If you can't budge 'em, join 'em."

I am worried that my lack of action is effecting the kids. We've been waiting, at a counselor's guidance, to tell the kids about the chemo until a few days before it begins. Until then... What do we say? George asked many pointed questions about car insurance today (an intense discussion Tom and I were having with my mom prompted his questions). He felt that there was something he needed to understand and this must be it. He's asked nothing about the cancer. I don't know what to ask about it either.