Sunday, June 14, 2009

Loving Marian

The bones in her beautiful face hurt. Already the cancer beast has gnawed its way through her spine and ribs, leaving her skeleton with a fearsome lace-like elegance on x-ray images. Now it is attacking her skull. She told me when she first learned of the new mets it never occurred to her that her skull included her face.

Marian has lived with breast cancer for nearly a decade. The second time 'round brought her back to the Bay Area. She's a few years younger than I am, has a 21-year-old son, a husband. We met two years ago at Commonweal's Cancer Help Project in Bolinas, California. Marian was attending Cancer Camp for the second time and was accompanied by her father. I attended solo. That week I formed some of the deepest friendships of my life: Marian, Wayne, and Tom, who left the earth one year ago today. Marian was in a lot of pain during the retreat and still her presence was serene, funny, wise. I wanted more than anything to know her.

Yesterday Marian allowed me to care for her. She is at home in the house she decorated with her husband, her mountain of a Newfoundland, Bessie and Len's sweet Mona. The hospice team visits but does not stay with her and she is alone between friends, family and caregivers. At 9:00 am I arrived with Peet's coffee and bran muffin, as requested. I learn that sometime before I arrived Marian may have shattered a bone in her shoulder or arm while reaching for something over her head. That's all it takes when cancer has made piecemeal of your skeleton. She's in horrible pain yet going to the emergency room is discussed and with the nurse's phoned-in advice, postponed. Instead, we increase the pain medication and use a heating pad. The visits from these friends are too important and the benefits from the hospital trip uncertain.

The day passed in a whirl of friends, oxycodone, calls to the hospice for advice, make-up application, chatting, hugs, foot massages, a special-order lunch run, and so much more. How honored I am to be part of my friend's transition. Is it enough, I wonder?

She tells me she would really like me to help in the evenings, from 9:00 - 12:00, so she can get ready for bed and watch movies while Len can get some rest. She needs help with this, and with getting upstairs to bed. I'm willing. Len's not so sure.

At 6:00 I know I must leave. Marian is weary; she has done too much but could not have been stopped. The next day she has planned to visit her niche at the San Francisco Columbarium. I will join her. But first, I have to return to my children and husband, who have played plumbers all day, installing a new toilet and repairing an old one.

The drive between the two homes ticks by quickly. When I arrive home the relief at being in my house, with my family, is washed away by the weariness of the day. There's very little room to feel anything else.

I'm asleep before 10:00.

Saturday, June 6, 2009

Teaching a Ten-Year-Old the Self-Exam?

Grace experienced the excitement and giggles of the Fourth Grade Puberty Talk at school last week. We had the Mom and Daughter Talk, complete with appropriate book, earlier in the year, but this was that school version we all remember, the one where the boys and girls go their separate ways to learn in the privacy of the library or classroom about the great mysteries of growing up. The California public school version was better than the one I saw in Catholic school back in Illinois in the 70s; Gracie came home singing a little song! What she didn't learn is something I never thought about teaching her this young: the breast self-exam. After reading this article, I realized I might have to crash the youthful bubble with another lesson.

Ten-Year-Old Girl With Breast Cancer

I'll find a way to teach Gracie how to love her as yet undeveloped breasts while caring for her health. In honor of my grandfather, who survived breast cancer and died from prostate cancer, I will have to teach Danny the same skills.

The armor we give our children as they enter the world has changed. Protecting them from the enemy within is as frightening as shielding them from the predators on the street.

Sunday, May 31, 2009

Oklahoma, Where the Wind Comes Rushing...

When I let a lot of time drift by without posting I struggle for the right topic to resurface on.

There was the unplanned trip to Oklahoma following first a great-uncle and then a great-aunt's death. Both children and I traveled by plane and rental car to be present, gather with relatives unseen for decades (and never met by my children), and create "cousin bonds" I hope will stretch between Illinois and California. My mother's family, especially, is known for warm gatherings with open hearts and arms. This has been missing from my married life and I wanted our children to experience it. They soaked it up, learned firsthand about their family roots, and made me proud with their ability to adapt. It was 40 years ago that my mother took me out of school to accompany her to the funeral of her grandfather, in Oklahoma, and I still remember the mix of grief and joy the extended family experienced together. Now I was making a similar journey with my own children, and they were about the same age (7 and 9) I was those years ago.

When we returned home, exhausted from the many visits and reunions, the children asked me why they didn't know their uncle and his two boys, now 25 and 23. They had just met their aunt, my sister, and her children ages 7 and 10. Where was my other sibling? They knew that families didn't always get along - we had always been open although not specific about why some people were not in our lives - but this time I realized I didn't have an answer for them. I accepted that my brother had chosen not to be present in our lives but his kids were old enough to make up their own minds. With the confidence of a mother determined not to let her children miss out on an important family connection I took the information gleaned from the Oklahoma gathering and located one nephew through the internet. A gentle email inquiry and we discovered that he did want to get to know his black sheep relatives! Yahoo! We've begun an email correspondence with the eldest and will contact the youngest, too. While it may be true that you can't return to the home of your childhood, you can indeed create a home and childhood for your own family.

School is wrapping up and we're involved in the last concerts and plays of the year. Danny sang with his class, quietly, as he was overcome with stage fright. He'll get past that in a year. Gracie performed a flute duet, solo and played with her band with astonishing confidence. Tonight is the 4th grade musical and, having caught the early show, I can say it's really awesome! "Geology Rocks" is the title and it is a fun, creative way to learn about geology while singing some goofy songs. The California budget is threatening once again to destroy what's left of the public education system. This time we may really lose our fantastic library, the band and music programs, science specialists, the water to keep the playing field green, even some of the best teachers you can imagine. Our district's foundation for funding these "extras" (yes, can you believe a library is considered an "extra" in California?) is called SchoolForce and needs something like $500,000 by June 31, 2009 to save these programs and more. I'm going to put a link on my page in the hope that a generous benefactor will decide to donate via the Princess Hedgie Chronicles. Those nickels, dimes and $50 really add up!

On the cancer front, I'm happy to report a clean bone scan. NED, or "no evidence of disease" in the bones. I've gone back to Guru Beth, my incredible acupuncturist, for help with arthritis in the fingers, osteopenia, lack of spunk and weaning myself off aciphex, a treatment for GERD that may also be responsible for the fatigue I've attributed to treatment. Aciphex also interferes with the absorption of calcium, a problem when a body is already dealing with osteopenia. Nothing in this area is a covered insurance benefit, of course. Beth has offered me the best health advice of anyone and we'll just find a way to cover the cost.

My lovely friend, Marian, has ceased treatment and entered hospice care. Today I was finally able to reach her by phone and we scheduled a phone date for this Saturday. What I want to do is spend time with her. She is full of light and love. I don't know what I can provide her except my presence. I hope she trusts me enough to tell me what she needs and allows me to serve her.

Friday, May 8, 2009

The Rumor Mill Grinds On

"Please call and let us know if it's true what our daughter says, that Danny has swine flu. We won't tell anyone, but we need to know."

Holy moly. This parent tried to reach me by two phone numbers before leaving a frantic message on my cell. His voice was shaking with worry. Mine was shaking too as I dialed him back and muttered to myself in preparation for the conversation I was going to have. Shaking not with worry but with genuine anger.

After he picked up I introduced myself and calmly told him that no, Danny had STREP throat, not the swine flu. He most likely contracted it from another child in his class who was diagnosed earlier; we notified the school office as soon as we learned of the diagnosis and Danny was on antibiotics. The school notified parents as required. His sister tested negative for STREP throat but was kept home today because she felt "icky" and we would watch her; I also tested negative for STREP throat. At no time did any one of three different physicians deem our symptoms worthy of the swine flu test. We had symptoms of STREP throat, which happens to be very common in the local schools right now.

The other parent explained that his daughter and my daughter had talked about Danny being sick and that "it might be the swine flu." Well, since when does a conversation between two 9-year-olds constitute a medical diagnosis? And why would it occur to any sane adult that we would hide the diagnosis (or illness) from others? As though we could hide the diagnosis from anyone; we'd be on every local newscast within minutes of leaving the doctor's office.

The girl's father told me the swine flu was a "huge concern" and he was sure I agreed they needed to be cautious. No, actually I don't. I kept that opinion to myself and also bit back the questions I really wanted to ask him:

"Did you really think we would hide this illness and put the school community at risk? Did you mean to suggest you would keep it to yourself if we told you Dan had the virus? Why in hell would you do that?"

Maybe this flu will flare up in the fall and turn into a nasty killer. Now? It's a mild flu and I'm not that concerned. I do worry about the folks who panic in times of low stress. What will they do when there's a horrific crisis? Spread rumors, push others off the drawbridge, and lock the castle doors?

Holy moly.

Tuesday, April 21, 2009

$85 a Month, Rain or Shine

The kids and Joe had left for school and work, Anchovy the Cat had commandeered the dog's crate for a nap, Roscoe was snoozing on his back-up bed a few feet away, and I was nearby tackling the dishes when the lawnmower growled to life outside the kitchen bay window. A good five minutes passed before Roscoe roused himself, jumping on the window bench to view the two men outside with curiosity. He glanced over his spotted shoulder at me with ears pricked and eyebrows raised as if to inquire,

"Hey, Mom, did you know there were people in our front yard?"

Yeah, Killer. Go back to sleep.

Every other Tuesday Saul and his crew of one arrive to mow and blow our mini-estate into order. One week Saul and I fell to talking, as we sometimes do, about my health, our children. This was nearly a year ago when people were just starting to suffer the fallout of ill-conceived mortgage loans. Saul confided that he was about to lose his home. All that could be done had been done. The bank was not returning calls. The program then in place to help homeowners was nearly as worthless as the lenders. All Saul and his family could do was hand over the keys and walk away. This, for a man who owned his own business and worked in a back-breaking, sometimes hazardous field without sick leave or health insurance.

I remember checking in with him after learning the news. He told me that after speaking to me he realized that perhaps other clients could help. (I told him I'd seek financing information from a network I belong to and pass on our recommendations of his work to another local group of homeowners. Small help.) He decided to be honest about his foreclosure situation. Within a week, two clients called and cancelled their service. Saul was shocked. I was sickened.

Saul did lose his home. He is renting another home not far from the first and his kids are able to stay in the same elementary school. We refer friends and neighbors to him whenever possible. It doesn't seem like much and of course, it isn't.

When we look at things to cut from our budget the monthly yard service is an obvious target. Cutting back has a face, though. Balancing personal needs with the belief that we have a real, moral obligation to support one another is a big concept that can be distilled down to this: there is a man named Saul working in my family's yard to support his family.

Sunday, April 12, 2009

How to Bury a Goldfish

There is an art to arranging a goldfish funeral. The bereft must choose the burial site, perhaps under a newly planted daisy bush. Only the senior family members may dig the plot, and they should do so several moments before the funeral begins. The deceased is transported gently from tank to garden in a sea bag and released into the ground in one fluid movement. Words are spoken, solemn and from the heart, thanking the fish for joy given. The one who claims the most grief over the fish raises the plastic cylinder of Goldfish Flakes, reaches in and removes a final pinch of food for the journey home. Today, the sister in her Easter dress provided live instrumental music during the service: delicate notes of "Cumbaya, My Lord" floated in the April sunshine as her brother covered his pet's body with dirt. His mother helped him place small stones on top to mark the grave. When all was down, he placed a white daisy on top. Tears dropped hard and fast on the dirt where he crouched.

The sadness a little boy feels when his 3-year-old goldfish dies is larger than the animal. He needs to be held in his mother's arms as he cries about losing an orange fish named Mail Truck. He has to explain how small that fish was when he came home that first day, and how big he grew — almost 4 inches from nose to tail. He must tell how sometimes he would sit in his wooden chair and look at the fish swim, and always he would watch him from his bed as he tried to get to sleep at night.

In a day or two, when he tells me he's ready, we'll take the tank down and put it away.

Thursday, April 9, 2009

LIttle MIracles

Goldfish emergencies occur whenever I am out of town or expecting my own health news. Really, I've tracked this phenomenon. Yesterday the goldfish in question was Mail Truck, a sturdy Comet and sole survivor of an unfortunate overfeeding incident that took the lives of his tank companions Garbage Truck and Truck two years ago. Mail Truck has been Danny's pet for over three years and, with the exception of the feeding catastrophe at the beginning of their relationship, the only remarkable event has been watching the fish grow too big for his tank. Until yesterday.

Danny's yell echoed down the hallway before school. "Mommmmmmmm, come here. It's Mail Truck!" Nothing makes me run faster than the naked pain in my children's voices. Reaching his room I saw the cause: Mail Truck was flopped in mid-tank, supporting himself on the filter shaft so as not to drift. He was alert, breathing but it didn't look good. Danny was in tears.

"Help him, Mom."

Oh, geez. Fish saving is one of those mom jobs I'm not really qualified to hold. Okay, though, I knew enough to perform a little first aid. I gathered the fish bucket, gravel cleaner, two gallons of tank-ready water, fresh filter and a few water conditioners and started working while explaining to Dan how fragile fish were. What we had going for us was Mail Truck's toughness and his spirit.

"Look at his eyes, Danny. See how he's looking around? He hasn't given up, and we can't either. Go to school and I'll do the best I can."

When I showed up to volunteer at computer lab the first thing he asked was, "How's Mail Truck?" I replied that he was still with us. Danny shared the news with his best friend who then told him we should bang the fish's head against a rock so he wouldn't suffer. Ugh. Danny had the presence of grace to tell his friend that Mail Truck wasn't ready yet, and we weren't giving up on him.

All afternoon Danny checked on the fish, pronouncing his chances at "10%" and then "5%" of surviving. All I could do was tell him to give it time, not give up, and know that if his pet was going to die we were giving him respect and a peaceful way to go.

About 8:30 that night, as he was changing into his pajamas, Danny yelled, "Mail Truck! Buddy! I knew you could do it!"

In he ran to tell me that Mail Truck was swimming "95%" normally and acting like himself. "He's going to make it, Mom. We were right to believe in him."

I believe in the power of little boys, a goldfish with a will to live, and acceptance. Sometimes everything does work out at the end of the day.

Wednesday, April 8, 2009

They Don't Need to Know

Somewhere along the road of marriage, miscarriage, fragile pregnancies, too many pets and little babes with peculiar tastebuds I misplaced my meager culinary skills. Three years ago, when I veered off on the Cancer Detour, I abandoned all hope of recovering those skills or even acquiring new ones. Poor, hungry kidlets. Woeful, starving father of kidlets. And what about the recovering Cancer Mom, who tossed aside the AI-treatments in favor of nutrition and exercise? Coffee and laundry aren't on the "recurrence prevention" list.

With no room in the budget for a personal chef, dream though I may of such a luxury, I peruse my library of cookbooks. Considering I don't cook I have an amazing collection. The Sneaky Chef is one I've been meaning to study. Between appointments I sit in the van, check out possible recipes, list the ingredients and head into Trader Joe's. Knowing it will have to be a two-grocery-store trip (I so hate grocery shopping) I even purchase a $6.99 thermal bag at TJ's to keep the cold stuff cold. Run to Safeway, grab the rest of the items, and make it home in time to unload before picking up Round 1 of the kids. (Round 2 comes 20 minutes later.)

The first item I hoped would appeal to Danny who loves turkey tacos: a turkey meatloaf. The secret disguised ingredients, though, involve pureed veggies and beans, wheat germ, and a few other things Danny hasn't eaten in years. Did I mention that Danny doesn't eat vegetables? Well, surprisingly, he refused to touch it but dear Gracie, my flexitarian, did agree to taste it and loved it! A success! She needs protein and iron in her diet; this was an incredible triumph. Danny did eat green salad and bread.

The next day I made Peanut Butter Muffins that were really sneaky. While they suspected the meatloaf originated from the "sneaky" cookbook, the kids did not know the muffins came from the "sneaky" book, too, and that's why Danny tried them. That and the fact that I added milk chocolate chips to the mix. The muffins were made with whole wheat flour, wheat germ, pureed veggies (I used organic BABY FOOD: sweet potatoes, carrots, green beans, spinach!!!), organic peanut butter, brown sugar. Here's the kicker: Danny not only loved them, he ate three. Gracie had two. Joe tried the ones with strawberry preserves in the middle and liked them. Wow, I'm on to something here.

Food has become a power struggle for us, and an area of worry for me. Many days I just don't want to bother with eating, especially since the effort is often met with uninterested kids or whiney battles. But, I can't afford to abandon the act of nurturing my children or myself. What we eat matters, it really is life and death for our bodies and spirits. This may seem like a small thing and yet it could be the bridge that allows us to start having more variety in our diets, more complex food choices. Who knows, what starts out as sneaky may progress to a bowl of sweet potatoes or a bean salad or ...