Half Empty or Half Full?

This is really one of those rhetorical questions… is my treatment glass half empty or half full? And I don’t have an answer.

Yesterday was my chemotherapy day… a much-shortened version of it. Instead of six hours with the Taxol – Carboplatin – Avastin combination, I was finished in half an hour with Avastin only. I am still trying to decide whether this decision by my oncologist represents a failure of the “big gun chemicals” to achieve the desired result, or just an adjustment in the treatment plan. I would have liked to be more involved in the decision-making… to have been consulted rather than a unilateral decision made about my healthcare.

There exists a vast disconnect, not only between my doctor and me, but also between doctor and nurses. I saw my doctor last week but wasn’t told that I didn’t need to take the preparatory steroids for this round of chemotherapy. I had to call the nurse hotline to find out for myself. Then yesterday the infusion nurse was preparing to give me Avastin plus Zometa, which I had already received the prior week. (It is given every three to four weeks.) So it was again up to me to alert the nurse to that fact… “No, I don’t get Zometa today.” I also found this on the Zometa website: While you are receiving treatment with ZOMETA‚ it is important to take certain dietary supplements daily. You should take a multivitamin that contains 400 IU of Vitamin D. You should also take an oral calcium supplement of at least 500 mg. No one at the Infusion Center had given me that information. I only mention these things because I think it is important to know. It is absolutely essential that the patient and spouse (or partner) pay attention to every detail in the healthcare that is given. There have been far too many oversights to make me feel comfortable. My life will be shortened as it is, without putting it to additional risks. That is the half empty version. The half full version is as follows…

There is no need now for weekly blood draws. I will see my oncologist every six weeks rather than once a month, and the chemotherapy will take less than an hour once every three weeks. That means only two days in October are scheduled, giving me more personal freedom. Bob and I will enjoy taking long autumn drives into the North Cascades, and I can fully concentrate on writing my memoir. I would be happy about this if I didn’t suspect that I have been relegated to the “life-extending” stage of my cancer treatment. Perhaps that is all that I have ever had.

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Sunday at Boulevard Park

Patches of fog floated through the neighborhood this morning, a brief disruption to an otherwise sunny day. The packing boxes emptied, dishes were washed and stored in cupboards, a lost power cord for the computer was found, and boxes were refilled with the overflow and will be taken to the storage unit. The day is too beautiful to be wasted inside fussing with packing boxes, so we drove to Boulevard Park and the waterfront boardwalk.

I walked slowly and stopped often to sit on a conveniently placed park bench… a far cry from the quick stride I once had as an avid hiker. But while that is a frustration to me, I could still enjoy the afternoon’s activity. There were bicyclist, families strolling on the boardwalk, a man pulling up a crab pot, elderly people walking their dogs, two young women sitting on a rock at the water’s edge, one man who sat with pen in hand writing in his journal, another man with a laptop computer. There were many boats on the water, but so little wind that some of the sail boaters were using paddles. Bob remarked on what a wonderful community Bellingham is, and I heartily agreed.

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Paul Newman and Lung Cancer

Cancer has made the news with actor Paul Newman’s death yesterday reportedly from lung cancer. Everyone will shake their head knowingly… yes, Paul Newman had at one time been a chain smoker. It is this belief that anyone who gets lung cancer must have been a smoker that accounts for the lack of research funding for the disease that I am currently living with. But the truth is that the number of non-smokers being diagnosed with lung cancer is ever increasing. Please inform others of this fact when discussing Paul Newman’s death.

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Boxes, and More Boxes

Jeff and Bob finished unloading the 26-foot U-Haul yesterday and returned it to the rental agency. One storage unit was filled and the Loft that had looked so simple and orderly until now looks like a neighborhood garage sale. Boxes spill over with crumpled newspaper, brass candlesticks, dishes, pots and pans, the overload of possessions that I have tried so hard to reduce. Jeff left this morning to return to his home in Oregon after doing a yeoman’s job with the moving… even missing the Oregon State Beaver’s upset victory over the #1 ranked Trojans. The kitchen cupboards begin to fill with Bob’s cookware (he’s been hampered with trying to cook with one frying pan and one saucepan), and books line up on the bookshelves. If I had hair I would be pulling it out by now trying to decide what to do with all the rest of the stuff… back to storage, taken to Goodwill, thrown away, or usable here at the Loft? I need some order to the chaos that has become my life. I think I’ll have a cup of peppermint tea and read some words of wisdom from Lao Tzu.

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Favorite Things

I have been here before, watching packing boxes pile up in the middle of the floor. Some are marked “Fragile,” many are marked “Books” (I think Bob said there were thirty boxes of books), and others contain kitchenware, clothing, travel journals, and art supplies. There are three boxes labeled “Bird Nest” and one marked “Paper Wasp Nest.” Here in the middle of a city, it is all the more important to have those elements of nature near me, the feathers, stones, and framed pressed leaves; the stewardship staff Bob made for me when we lived on Middle Rendezvous Island. I tuck rocks in my pocket when I walk the beach, pick up feathers from the sidewalk. Yesterday Jeff brought me three crow feathers that he had found on the golf course. Bob discovered the robin’s nest that I carefully lift from a packing box today. We must find a place for Bob’s kava bowl that he obtained in Fiji when he sailed in the South Seas… it is carved in the shape of a sea tortoise and comes with four cups made of coconut shells. These are the things that will make the Loft our home… the things that define our lives.

Just the beginning of the boxes.

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Better Late than Never

I received this e-mail today from my friend Jane in Nova Scotia. She is a social activist, and a talented artist and photographer. Now the public knows she has another talent… singing.

I was thinking of you today while I was at work. I wanted to tell you that you continue to inspire me. This time in relation to singing. I'm a closet singer but for a few friends who play piano for me and whatnot ... but on Friday night, at ArtsPlace in town (the community art centre) there was a "Leonard Cohen Coffeehouse Open-Mic" evening. Another friend, Dorothy (the librarian at the Annapolis Library), and I have been practicing our Leonard Cohen, along with a dear friend Kurt who plays piano for us. We've been getting together for a few weeks now and decided that, yessiree, we could sing in public. So we did. And part of my courage comes from you, and part from me saying that I am nearly 61 years old and it's time I step on out if that's what I want to do. And it was swell! We sang a couple of times through the evening and did about six songs altogether. What fun! There were about 60 people there. A good crowd. Familiar, supportive people.

Kitwanga to Bellingham Update: Bob arrived home at 11 o’clock this morning, bearing a box of Tim Horton donuts. After two days of steady driving and 900 miles, he decided to take the rest of the day off. Unpacking will take place tomorrow, with the help of my son Jeff. A big thank you goes to our good friends Richard and Cheryl in Kitwanga, who helped make a big chore a little easier, and sent Bob off Sunday with a full stomach and a Care Package of munchies to eat along the way. These are the kind of people who make the world a better place, and our lives all the richer for them.

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Moving On

Today I met with my oncologist to discuss the CT Scan I had had last week. The scan showed only a slight reduction in the size of the tumor, meaning that the chemotherapy is losing its effectiveness. That, coupled with a low white blood count, calls for a new treatment plan. Instead of the Taxol, Carboplatin, and Avastin combination that I have been receiving, I will receive only the Avastin, which inhibits tumor growth by blocking the formation of new blood vessels. We have gone from trying to shrink the tumor to just inhibiting its growth. It is disappointing to have reached this stage so early in the game, but I am grateful for the progress that has been made. And when the cancer starts growing again there are second line drugs to try like Tarceva and Alimita. It is a matter of finding the right one for me… so we move on.

Tonight Bob is in Hope, B.C. He will arrive in Bellingham tomorrow. (Hope was the beginning and end of our cross-country trip last year.) He has strict orders to pick up some maple dip donuts from Tim Horton’s before he crosses the border.

Once in a Lifetime

Maybe I can make a difference in the world, or at least my very small part of the world. Last night my niece videotaped me telling travel stories about following orangutans in Borneo, riding a camel across the Thar Desert, and hitting a target with a blowgun in an Amazon jungle. I like to tell the blowgun story because the experience taught me never to pass up something that may only come once in a lifetime.

The headman of a village was demonstrating to our group how a blowgun is used. He inserted a small dart into the long hollow tube, placed his mouth around the other end and blew with a great gust of air. The dart flew true and into a target that had been placed high in a tree. He offered to let the rest of us have a try. Several macho young men in the group were first to step forward. One after the other they tried to hit the target and failed. Then some of the women gave it a try and also failed. I hung back. I had been extremely sick while in Peru and hesitated to put my mouth on the blowgun that was being passed from one person to another. But I watched and thought I knew why no one was hitting the target. Finally I decided to give it a try. How many times in my life would I get a chance to use a blowgun? I stepped forward, inserted the dart, put the end of the blowgun in my mouth, took aim at a point slightly above the target, and blew hard. The dart flew on the curved trajectory I had suspected was the secret to success, and found its mark in the middle of the target. The guys were chagrined, the women amazed, and I just whooped with joy. The headman smiled. But the point is that I almost lost that chance to have this memorable moment in my life.

When my sister Judy called this evening to say that she and my niece had gotten home safely, she explained why they were a little later than expected. “Remember the story about the blowgun that you told last night? Well, we were driving past Boulevard Park and realized that we had missed walking on the boardwalk this week. So we parked the car and took that beautiful walk out and back.” Granted it wasn’t some grand adventure in a foreign land, but Judy and Tamara have the right idea. Don’t hold back and don’t wait for another day that may never come. (Earlier in the week they had “on-the-spur-of-the-moment” driven across the border to Vancouver and back, just to say they had done it. Way to go!)

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Leaving Kitwanga

Packed up and ready to leave (photo by Richard Glover)

Umbrella Day

We woke to a dismal day. Mist and low clouds obliterated Bellingham Bay. We waited. Every once in a while one of us would look out the window and say, “I think it is getting brighter,” or “I think the clouds are lifting.” By noon we realized our day at the Farmer’s Market was going to be a wet one… and it was. The upbeat energy that is normally part of the market scene was missing, but the fall crops sparkled with raindrops. There were pears, dragon’s tongue beans, corn, vine-ripened tomatoes, and wreaths made of hop vines. My sister Judy (above with Tamara) loaded up on homemade bread, garlic pepper jelly, and a bag of mixed salad greens, and fresh churned butter. Tamara bought a pot of Swiss mint. Tomorrow they return home, leaving me with a week of good memories.

A Week for Visits

This has been a week for visiting. My sister Judy and niece Tamara came to be with me while Bob is in B. C. With no TV or radio to intrude, our evenings have been spent in conversation. A surprise visit from a cousin who lives in Alaska took us to the Colophon Café in Fairhaven for a bowl of African peanut soup while cousin Sharon (and husband Gene) waited to board the Alaskan ferry. Meanwhile Bob is finishing up the packing, loading the U-Haul, and hopes to start the long drive back to Bellingham on Sunday. That closes the book on another chapter of our lives.

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Bliss

Even coastal grey days have their compensations. After nearly a week of sunny weather, this morning arrived as a reminder that autumn is here and winter not far behind. So I turn up the thermostat for the gas fireplace and climb under a soft woven lap robe in colors of peach, taupe, and mauve. I face the fireplace and can see the flickering flames. I open my new paperback book “Tales of a Female Nomad,” by Rita Golden Gelman, and succumb to the feeling of absolute bliss.

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Nothing to Regret

Bob is in Canada, packing two years of cabin living into boxes. His e-mail read, “Guess that a lot got done today, it just seems that there is so much more. But how can I complain when I have mountains wherever I look and deep forests all around.” Our good friend Richard is there too, lending a hand wherever he can. He used his quad to pull the T@B trailer from behind the cabin… he will sell it for us. Someone asked me if I regretted that (parting with the trailer) and I said “No, no regrets.” Ask me instead if I am glad we acted impetuously last September… setting off on another spur of the moment adventure? When I was writing a Travelog Update from Calgary, I had no knowledge of what lie ahead for me… that within a year a trip like this would be impossible for me. So we did what we set out to do – drove from coast to coast and back again, adding new memories and experiences to those of sailing and living in a log cabin with mountains and forests, bears and wolves. We have nothing to regret.

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Harvest Time

The recent warm autumn days have been kind to the Bellingham organic farmers, making up for their cool, wet spring. The tomatoes are ripe, beans are ready for picking, and the cucumbers and dill are all set for pickling. We even saw the first pumpkins of the season, bright golden balls fresh from the field. There were many more vendors on this brilliant sunny day… a celebration of harvest time in the Pacific Northwest.

I’ve been thinking a lot about hope lately. A year ago we set out on a cross-country trip looking for hope. Today I find hope in the faces of small farmers and the richness of their bounty. And it lifts my spirits to walk among them.

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Have a dee-da-dee-da-doe-doe-day!

My fourth round of chemotherapy has affected me much earlier and with more power this time. Fortunately it is only the fatigue factor, but at times it takes all my strength to just stand for any period of time without getting light-headed and wobbly. This creates more of a challenge but with Bob’s help we manage to squeeze some enjoyable activities into my narrow range of doable activity level. Last night we drove to the St. Sophia’s Greek Orthodox Church to take part in their annual Greek Fest. When we arrived there were already long lines of people waiting to purchase the traditional lamb dinner. We opted for chicken gyros, baklava, and sweetened black Greek coffee made by a woman who wore an apron that said, "100% Greek Born in the USA."

Today I ‘helped’ Bob put together a computer desk we had just purchased from Office Depot. The word helped is a little generous, seeing that my part consisted of only reading the instructions. But it was sitting together in the guest room, deciding what to start first and which to use… the pan head screws, the flat head screws or the bolts… that was the important thing. It was being included in the activity, even in my limited capacity.

Laughter is important too. My sister Nancy understands that. Bob brought in a fat envelope that the mailman had just put into our mailbox. Inside was a card from Nancy. I opened the card and music leaped out… funny music… "The Hampster Dance Song"... Have a dee-da-dee-da-doe-doe-day! Hee haw! Have a great day. It just cracked me up. Now every time I open it I can’t help but smile. Thanks Nancy.

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When Today Isn't Enough

The phrases ‘one day at a time,’ and ‘live in the moment’ are so easily passed around as a panacea for life’s little – and not so little – problems. There is wisdom in those words, but don’t be fooled. It isn’t always enough to savor the day, especially when that day holds nothing more than the unsuccessful attempt to think clearly and to do something other than lie energy less on the sofa. A chance remark by Bob yesterday helped me to realize that fact. I was admiring a sweet little sailboat bobbing around on the bay… its unbleached canvas sails gleaming in the autumn sun. I pointed it out to Bob who with no hesitation said, “Let’s get you through this (the cancer) and then we’ll get a little boat of our own to sail out there.” My heart did a flip. Could we do that? Maybe… but what I do know is that thinking beyond ‘today’ brought a spark back into my life… sometimes we need something to look forward to, to know there can be a better day ahead.

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Meat Loaf and Potatoes

How can you complain about a day that ends like this? Yes today was my day for chemotherapy… my fourth round. It started at 8:30 in the morning and lasted until 1:30 in the afternoon. There was some difficulty in finding a cooperative vein. But Bob treated me tonight to ‘comfort food’ for dinner… meat loaf, roasted red potatoes, and my favorite broccoli salad… and from our windows we watched a sunset that was an ever-changing panorama of color stretched across the western horizon and reflected in Bellingham Bay. This is why I choose to undergo chemotherapy… for more ends of day, and sunsets like this. (And more meat loaf and potatoes.)

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Autumn Day at the Market

These early September days are so familiar to me. They remind me of cool mornings and heavy sweaters worn on the way to school. By afternoon the low clouds would have cleared away, and it was always a hot walk back home with the bulky sweater tied around my waist. Today was like that, but the morning clouds didn’t deter the Farmer’s Market crowd. With the end of summer, farm fresh corn is showing up at the booths, hot peppers and tomatoes too. Many varieties of apples available, but no apple cider yet. We watched a man play border pipes … a close cousin to the highland bagpipes, and ate Greek food for lunch. The afternoon brought the sun out in full force and if I had had a sweater, I would have tied it around my waist. Unfortunately I was wearing a sweat suit.

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Facts About Lung Cancer

Lung cancer is the leading cause of cancer deaths in the United States.

Lung cancer causes 30% of all cancer deaths.

Lung cancer will kill more people this year than: breast cancer, prostate cancer, colon cancer, liver cancer, kidney cancer, and melanoma… combined.

Lung cancer will kill nearly twice as many women as breast cancer this year.

Lung cancer will kill 3 times as many men as prostate cancer this year.

Over 50% of new lung cancer cases will be diagnosed at a very late state – Stage 3b or 4 – and only 5%of them will live for 5 years.

10-15% of new lung cancer cases have never smoked.

While the survival rate for most cancers have dramatically improved, the underfunding of lung cancer research has kept its survival rate almost as low as it was in 1971. The 5-year survival rate for prostate cancer is 99%; breast cancer is 88%; colon cancer is 63%; lung cancer stands at only15%.

* Information from the Lung Cancer Alliance

Do not go gentle into that good night

Yesterday we received an offer on our log cabin and property in British Columbia. Today we accepted the offer. It elicits a number of emotions… of course there is relief and gratitude to have a quick sale in the midst of the housing market bust; but for me, the sale also represents loss; loss of a self-sufficient lifestyle, and even more it is the loss of something that set me apart from others. I can remember writing a few years ago that I had never wanted to live an “ordinary” life, whatever that meant, and I think I have lived up to that dubious distinction of being different. In the past twelve years I have lived in a Victorian house, a sailboat, and a log cabin. More than one person has called me “a free spirit.” Now I live in a city, in a condo with all the trappings of modern living. It is comfortable, and convenient, and normal. Having been given a death sentence with my lung cancer, I should be content to live my remaining time in comfortable surroundings. But I am not content. I am reminded of the words of Dylan Thomas:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

I have watched a movie called 'Secondhand Lions' several times this summer. It is about a 14-year old boy named Walter (Haley Joel Osment), who is dumped off by his mother to spend the summer with his two eccentric grand uncles (Robert Duvall and Michael Caine). The uncles purchase a lioness from a Circus animal dealer with the intention of shooting it like big game hunters. But she is old and toothless, and Walter ends up adopting her. Walter’s mother comes back with a boyfriend who begins to beat Walter. Jasmine (the lion) rushes to defend Walter, seriously wounding the man, and although the lioness dies of a heart attack in the process, she arouses enough noise to attract the attention of uncles Hub and Garth. Walter holds Jasmine's head in his lap and says, "She was a real lion, wasn't she? There at the end. A real jungle lion. A real Africa lion." Hub (played by Robert Duvall) says, “Yup, she died with her boots on.” Well, that’s how I want to go… like that lioness, I want to die with my boots on.

We are here in Bellingham by necessity not by choice, and we don’t know what exactly lies ahead. I do know that no matter how much I enjoy the Loft and the City of Bellingham, I need to find a way to keep and express my own identity, to rise above the ordinary. Whatever I do, I will not go gentle into that good night.

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Sehome Hill Arboretum

Wading in shallow pools of the Umpqua River in southern Oregon, backpacking the Mt. Jefferson Wilderness Area, setting up tents and cooking on campfires… Pacific Northwest forests have nurtured me all my life. So finding 180-acres of natural forest habitat in the middle of Bellingham, is like giving bread to a starving child. Western Washington University and the City of Bellingham manage this preserve on Sehome Hill, and its six-miles of hiking trails. Conifers dominate the arboretum’s forested surroundings; primarily Douglas firs together with lesser numbers of western hemlocks and western red cedars. In open areas that receive more light, there are big-leaf maples and alders, while the understory shrubbery is dense with Oregon grape, Indian plum, and snowberry. Sword ferns cascade down steep banks and carpets of moss cover everything. And it is so quiet. Not even the tinkle of a bear bell as we walked along the trail yesterday. Bob stopped and said, “It feels funny to be walking in the forest without a bear bell.” Yes it does. When we lived in northern B.C. we always attached a bear bell to our hiking sticks. But there are no bears here, although there have been occasional cougar sightings.

After our hike we drove to Boomer’s Drive-in Restaurant (the real thing) and ordered root beer floats. They are missing those unintelligible speakers we all remember, but there are the stalls and the lighted menus next to the car, carhop service, the trays that attach to the car window, and music straight out of the fifties. Bragging rights: “Voted Best Burger in Bellingham” and “World Famous Waffle Fries.” I don’t know what waffle fries are… maybe we’ll try them next time.

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Salmon Woman

Our walk yesterday took us along the Whatcom Creek Trail. The waterfall and creek empties into Bellingham Bay and was once the site of a thriving Lummi village. It later became the location for a sawmill, then a public dump, and finally a sewage treatment plant. In the 1970’s there were several plans created for a Maritime Heritage Center and Park that would include the restoration of Whatcom Creek and its habitat, and efforts to re-establish the wild salmon runs. As part of the restoration of the park, a 20-foot tall hand-carved Lummi totem pole was erected in 1997, called Xwot’qum Sto’lum. The ceremony included chants for the strength of the pole led by Jewell James (the carver) and the late Cha-das-ska-dum Which-ta-lum, who told the story of the totem. The totem depicts salmon woman, raven, bear and three steelhead salmon.

The Legend of Salmon Woman and her Children*

A long time ago, after the Big Flood, the people could not yet hunt and were starving in their village at the mouth of the river. In desperation, the Chief sent his son, Raven, out into the Big Water to find food. Raven became lost in the fog and almost died of starvation and exhaustion. Salmon Woman heard him singing his death song, took pity on him, and saved him by feeding him her children, the salmon. She then had her children jump through the water and led him back to his village at the mouth of the river. The people threw a large feast to honor the Salmon Woman, who became Raven’s wife. She told the people that her children, the salmon, were her gift to them. They could have as many as they wanted, but they must promise to never take them from their spawning beds.

Each year the salmon came to the village as promised and the people caught all they wanted before the salmon went upstream to the spawning beds. Each year the salmon returned to their mother’s house in the Big Water. The people were happy and prospered.

As time went by the animals had multiplied and the people were able to hunt for food. But while Raven was away on a hunt, Bear broke the promise to Salmon Woman. He went up to the spawning beds to catch salmon thinking no one would ever know. But, as Bear touched each salmon, all of its kind rolled over and died and drifted down stream filling the river with dead salmon. Raven returned from the hunt, to great crying and wailing in the village. Salmon Woman was very angry and threatened to take all her children and leave.

Raven rushed up stream to the spawning beds and caught Bear just as he was reaching to catch the Steelhead. Raven took black-powder from his medicine pouch and threw it on his brother turning him into a black bear. He told him he could never return to the village or he would be killed for food and that he must walk on all fours and fish only in the spawning beds. This appeased Salmon Woman, but from that day forward to protect her children she only let one species of salmon in the river at a time. To this day the Steelhead is the only one who returns to the ocean after he spawns.

To honor Salmon Woman and remind the people to always respect and protect her children, Raven ordered that a big feast and ceremony be held each year in gratitude for her generous gift. The people of this land will always live in plenty and be happy as long as they protect the children of Salmon Woman.

*As told by “Cha-das-ska-dum, Which-ta-lum” of the Lhaq’ te mish nation.

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