7 posts tagged “travel”
Ah, Black Friday. I don't participate---never have, and unlikely ever to, except possibly online. The day after Thanksgiving for me has always been reserved for sleeping in and generally spending the day reading, watching movies, or doing whatever would be considered a luxury of time. (Well ok, living is a luxury, but you know what I mean.) I suppose Christmas shopping is a luxury, as is having Black Friday off to do it...I just can't get into the fray.
I feel slightly confused, a bit like the weather, which is cloudy and muggy and warmish. I laugh at Anthony Bourdain, who could eat Balinese roast suckling pig till he loses consciousness and proclaims it the best he's eaten (and he gives a rundown of all his pork place highlights). I can certainly relate to his feeling that it's time to stop the madness and stay in paradise. I'm suddenly drawn to Bali, feeling deeply the insight of his commentary. But I digress.
I've been called to bed by the snoozing husband, but I can sleep in tomorrow, and I need to log these thoughts in for posterity.
I've traveled a bit this year, though the idea is shadowed by the fact that it meant I was away from Bruno a great deal too, on his last year of life. Which constantly focuses the view of spending time with people I care for, doing things I want, rather than either returning to work (not "career") or holing up in comfortable but complacent solitude (so easy to do). I, or someone else I love, could be gone in no time---poof! Gone. No negotiating. I don't consider a long, drawn-out death the right time to spend time with someone, either. They won't have good memories of it, and the dying person's too delirious for it to be meaningful (well, maybe).
Beautiful evening. I'm awash with emotions. I've just taken the first walk on the beach since returning from London, and suddenly I appreciate what it means to live near the ocean. This is why I can't move inland, this is why Minnesota will never work out for long. San Diego came rushing back to me, but mostly, the feeling that if you could be on the sand, in the water...you could be healthy. You could live. You could, maybe, parasail, and join the colorful orgy of kites over the blue-green water.
Taking big gulps of air, admiring the perfect shimmer of the grey-gold sand, I felt renewed, felt happy again. Gone was the feeling of blandness, of boredom with the uninteresting landscape. Here was a great and simple thing: sand and water, and people strenuously fighting the wind in their sails, trying to bring them onshore. I wanted to feel their health surge through me. I could almost remember the rapid beating of my heart and the feeling of my lungs expanding to hold more air. I've always loved that feeling, and could only get it outdoors. Stepping onto the sand was all I needed.
I used to be such a "nature freak", holding Aldo Leopold's Sand County Almanac and stories of the Round River as my bible. I loved hiking desolate places like Wyoming's Windriver Range. I considered moving to Colorado, Montana, Wyoming. Alas, all landlocked. I'm tied to the sea.
High altitudes are out, I'm told, because of my condition. This leaves out a few places I'd hoped to see, like Chimayo, New Mexico. But, maybe I'll defy that too. I'll have to make the best of it. There are plenty of rivers and low-altitude hikes, and shucks, Madame Ocean beckons. I'll content myself with snorkeling, and cover up from head to toe in an attempt to keep my dragon skin from worsening. It's silly to even discuss any of this. It's amazing I talk of future travels, like I have all the time in the world to plan.
Reading Roy Siever's NPR blog My Cancer reminds me that once you have cancer, there's an inability to forget. No matter how good you feel and perform, even in comparison to those without the disease, you carry the anxiety of not knowing how you'll feel the next day, the next week, the next month...the next trip. I'll make plans for Christmas, but I truly have no idea if I'll be here. As Roy so eloquently replied to Ann Romney (Republican presidential candidate Mitt Romney's wife), who remarked in People Magazine, "Couldn't I just have cancer and die?", rather than MS, which she was suffering from:
Cancer does not bring a quick death. Cancer is painful and debilitating. Cancer wreaks havoc on the life of anyone who has it, and the lives of the people who care about them. Cancer twists the present and steals the future. Cancer hurts. It hurts so badly that sometimes you can barely stand it. Cancer is not something to be sought after. Cancer is not the lesser of evils. Cancer is the Beast, the Monster, the Murderer. I know there are diseases out there that are crueler than Cancer. I know there are those whose burdens are heavier than ours. But cancer is not an easy way out.
June 15th marked the one year anniversary of my diagnosis, although I always acknowledge it in January. January 2006 was when I first noticed the dry cough, so in my mind, cancer was already there, and for who knows how long.
Rosalie, my clinical trial nurse, called yesterday to say I'm "doing considerably better", based on my CT scan on June 27. I didn't ask her to elaborate---I'll get the report in a few days, when I see a different oncologist (mine is in Italy), hopefully get the okay to fly long distances, and receive chemo. So I don't know if "better" is compared to my low point in May, or my high point in February. Are there fewer tumors, or are they markedly smaller? I'll do labs on Monday, so we'll see where the marker's at.
Still, I informed her that this past cycle wore me down quite a bit, taking two weeks of energy. I wondered if it was going to continue like this, with the rash now extending down to my ankles. She acknowledged that this chemo drug is much stronger than my first-line treatment, lamented my allergy to Taxanes, and thought perhaps my Erlotinib (Tarceva) dosage needed reduction. She would hate to do that, as my response to the current regimen/dose has been so good. I hoped the scan would be remarkable, as I feel almost as good now as I did while undergoing the first round of chemo, which is to say, during my good week, I feel pretty normal---I can almost forget I'm ill (except that I want to jump out of my skin). Once you've had chemo though, you'll never be "good as new" ever again. You've been polluted.
Anyway, the conversation somehow turned to the story of my journey to diagnosis. Rosalie seemed astonished by it, and said with some amazement that I was doing incredibly well---she didn't add "for having survived a year and a half so far". The discussion always turns to the future, to what we'll do once this stops working. At a certain point, the discussion has to stop, because in my mind at least, there might be something else out by then that might give me more than four or five months. If the tumor in my lung can go away, or if all the tumors can really shrink, then maybe someday, when I really need it, they can be radiated, maybe using GammaKnife or Novalis (new, targeted radiation beams). As witnessed in Leroy Sievers' NPR blog, cancer can return to the same area inspite of radiation. How much radiation you get the first time determines whether you can receive it again (at least as concerns areas like the spine, and bones in general).
My Mom holds out the thought, You might be the Miracle Girl. She knows the course I'm on is not a cure, but You Never Know. And even though I'm feeling a twinge in my lower back, it's nothing like the intense back pain I've withstood for so long (years).
At the end of July, I'll have been in treatment for a year. I've always led a frenetic life. I've worked since I was 14,
It's an understatement to say Life Will Never Be The Same Again. Cancer changes one's point of reference so much, I find myself wishing I could just have a "normal life". It makes the simplest things special---the bougainvillea hanging out of trees onto the street, a stroll on a fine day, perfectly barbecued ribs, finding your cat is in good health and is negative for disease. I still dream the big dreams. I dream of riding the London Eye, seeing the chateaus of the Loire Valley, riding camels past the Great Pyramids, greeting the sunrise at Angkor Wat, taking my parents on a cruise....I dream of time, I dream of lost innocence, I dream of not waking up in the night screaming and sweating from fear. I dream of a few more years laughing with my husband, nursing his sunburns, dragging him reluctantly across foreign lands. I dream of good times with family and friends, and time to thank them all properly. I dream of and pray for guidance and transformation. Tonight I will dream of having tomorrow.
And Doc Simmons still firmly believes I'm on the placebo. He gave me a card to a restaurant he recommends highly. Angeline's Louisiana Kitchen is over on Shattuck---Berkeley northside I think. Like I said, I love that we talk about other things besides the tumor that's now 4 cm. It was 7cm back in August before I started chemo. No change to the bone lesions, and no new ones. He's getting really impatient. He did refer me to a podiatrist for my sore left instep. Sounds like I fractured it long ago and ignored it. Now there's something like a bone spur on my instep. Anyway, nothing about the cough. Maybe it's allergies?
My confusion has to do with the size of the large tumor. On Valentine's Day, Rosalie (the clinical trial nurse) said the tumor had shrunk to 5.2 cm. I just read on the report that at the last scan, it was 4.1cm. Is she confusing me with someone else? I'd rather have 4 cm, of course, but this time, she said, "Your scan looked great!" I suppose I could read the report from February, to see what's what, but the current report says quite clearly, in parenthesis, that the previous measurement was 4.1cm.
Anyway, I spent a couple of hours with my friend Grace on Friday, and part of it was spent sniffing perfumes at Bloomingdale's. I can't say for sure, but I believe this was the cause of the migraine that set in shortly after, which plagued me all weekend. My sinuses opened up this morning, allowing me a couple of hours of sleep, finally.
Note to self: no more perfume sampling. This will also prevent me from spying any more $1600 handbags I may try to justify buying. (The justification is also the impediment: I'm dying therefore I should enjoy it; I'm dying, so why should I acquire more possessions?) (There's the opposite argument, which is, "Buy and enjoy if that's what you feel. You don't know WHEN you'll die...etc.) (This is an interminable argument)
As for other expensive things...I want to make plans to travel, but it's difficult to make last minute plans, and making long-term plans is sketchy, as I can't predict where I'll be in, say, 3 months. Aaarrrggghhh.
There's a new travel show based on the book by the same name, but it really ought to be called, "1000 places to see before you die---in 6 months or less."
