Saturday, January 22, 2011

The Most Important Lesson

In my post the other day I mentioned remembering my lessons--live in the moment, be grateful, walk the dogs, hug Ian.

Well, my Xeloda arrived this morning at 10:00am, before I was even ready to take it (must eat breakfast first), heralded by a grrr-ing Hoover, who recognizes the sound of a UPS truck pulling up to disgorge people who will flagrantly invade his territory without his permission. Yes, alas, he hears this sound a lot.

The lesson I had forgotten to mention was this: There is ALWAYS enough time.

Friday, January 21, 2011

11.99999999999th Hour Success

So Xeloda, the chemotherapy drug I've been taking for the last several months, is an expensive drug. At my last insurance company, it was $3000/week, which equals, of course, $52000/year. For the most part, that was the drug company's part—I had a $50 copay that was unrelated to my out-of-pocket maximum: i.e. I paid it anyway. Xeloda is taken on a 3-week schedule of two weeks on, one week off. On January 4th or 5th, half-way through my first week of the latest cycle, and the last one paid for by my old insurance, I finally received my insurance membership number for my new insurance, contacted the insurance company, and emailed my nurse to let her know that a new prescription would have to be written, and where it would have to be sent. She did that by 6 Jan.

Since then, we've discovered the following things: for normal drugs, my mail-order pharmacy is Medco. For special drugs, i.e., Xeloda, Medco has a high-end pharmacy called Accredo that they contract with. For EXTRA special drugs, i.e. the ridiculously expensive Xeloda, a "preauthorization" is required from GEHA, the parent insurance company. This is a lot of levels to go through.

Once all of these levels and tasks have been successfully accomplished, the pharmacy calls me to extract my copay (in this case, almost $130 per three weeks), and set up delivery, which is overnight UPS.

Not surprisingly, accomplishing all these steps was not as easy as mounting a short, shallow marble staircase up from an infinity pool overlooking a Tahitian paradise. It was rather more like climbing an ancient ladder in the middle of the Amazon rainforest, with most of the rungs eaten out by poisonous giant termites. First, Nurse Deb spent a couple hours on hold trying to reach the preauthorization people so that she could get a form to fill out. Then the form had to be officially "received," days after it was faxed in. I called daily to check on progress; at one point they finally said "we'll call you at . . . well, it looks like we don't have a number for you. Where should we call you?" The day before yesterday the authorization hadn't quite been accomplished but looked like it was going to be by the end of the afternoon; yesterday, the authorization was accomplished and now the actual pill-pushers had to package everything up and then they would call me. That should've happened by the end of the day yesterday, as I need to take the drugs TOMORROW, SATURDAY, AND I AM LEAVING FOR HAWAII ON SUNDAY. I made this known to everyone I spoke with along the way.

Could they, in fact, send the drugs to me in Hawaii, if the process continued dragging on (I called and got a mailing address on the house we're renting)? Yes, but they only ship to Hawaii on Mondays and Tuesdays because the pharmacy is in New York and UPS doesn't guarantee one-day delivery except for the contiguous 48, and it would be the end of the week—i.e. about one week late—by the time they arrived there. Okay, can they ship to me, here, on Saturdays? Well, yes, if UPS delivers in our area on Saturdays. Well, do they? Well, I'll do my best to get things sent out today so they'll arrive Friday.

In the event, I did not get a call yesterday (SHOCKER), and so as soon as I hauled myself out of bed this morning and made my coffee (I'm not a total idiot), I put on my headset, got comfortable, dug in on the couch for a long siege of the Accredo customer service people (I was not getting off the phone until I knew I could get my drugs either by mail tomorrow, or somewhere within the city limits), and dialed.

One nice thing about the insurance company is that they almost always answer the phone before you go on hold. Ian, the nice-sounding gentleman this morning, picked up on the 2nd ring. I explained what I was after, and he asked the necessary questions (birthdate, spelling of name), and said "Well, let me put you on hold and contact UPS and see if they can do a Saturday delivery in your area. Should be two minutes."

A couple minutes later he was back. "They do a Saturday delivery, and will have the drugs to you by noon tomorrow morning. It'll be $126.49 copay. Would you like to pay that now? And set up an automatic payment for the rest of your prescriptions this year?"


I was, of course, greatly relieved—I can now continue to take my drugs, perhaps only a couple hours behind schedule (we have to take the dogs to Maple Valley tomorrow morning and so I probably won't have a chance to have my morning dose until early afternoon)—but also a little incredulous. I had been working on this prescription every day for a couple weeks. Everyone I talked to at Medco/Accredo claimed that they understood the urgency and marked in my account notes about what was going on, and yet—they did not have my phone number. They did not know that UPS would deliver to me on Saturday and, I can only assume from the absence of their call to me, would not have bothered to find that out. In all, I was almost deafened by the screeching grind of rusted, un-oiled, un-maintained gears, but I persevered to the last of my strength, and won. And I am STRONG.

I'm suddenly really looking forward to a week in Hawaii. I could use a vacation.

Thursday, January 20, 2011


I do tarot readings for myself periodically; at the beginning of each year, and whenever I'm feeling particularly prickly about life and need some perspective. I find the process of centering myself, shuffling the cards, cutting the deck, and slowly laying out the spread, one card at a time, to be calming and illuminating, often profoundly so. I am regularly stunned by what I learn about life, the universe and everything, in the process of this ritual. These readings in specific are part of what I rarely write about here, because the emotions they trigger are often too raw, and the ideas too eerily prescient. I feel as if I'm having conversations, and not necessarily with my own subconscious. The tarot does inform the blog, though, by helping me continue to open my mind, my spirit, my heart.

My reading for the year this year was chock full of cups, the suit representing the emotions. A reading I did just the other night started with the Three of Cups, Overflowing, crossed with the Devil, suggesting that I had a lot of pent up emotions that were going to be coming out, and that I was going to reach a new level of clarity about my existence.

I know things are fermenting and simmering throughout my being—I recognize clear connections between my various parts. How sadness exhausts me. How dread often leads to migraines. How physical exertion, particularly with horses or climbing walls, makes me joyfully immortal. But my general state of being these days, my status quo, my default, is unrest.

This hasn't always been true, and so I am bothered by it, which can add to the unrest if I am not careful to remember my lessons—live in the moment, be grateful, walk the dogs, hug Ian.

It's not surprising that I am experiencing existential unrest, of course. But it is not . . . restful. I would like to find rest again, and not simply by pushing unrest aside for a while. And so, I question, and I do my best to listen. I talk to people wise in all sorts of ways—those who keep my structure healthy, those who keep my chemistry in line. Those who ask me questions that I may not think of, even through the tarot. Those who push me to test my physical courage, the limits of my strength. I open my heart to grief as well as joy. And I am learning rest again, through these teachers and lessons of life.

My teacher today was Dan the Witch Doctor, who seems to leap forward in intuition and skill between each of my visits. Today started out as normal—I brought in pills to test (a new liver support—why leave out the liver when the kidneys, bones, brain, lungs, and heart are all getting special care?), and we chatted about what had been happening since I last saw him, back before Christmas. He asked, seemingly casually, about my dad, how old was I when he died (19, a baby, half my life ago), bee sting, right? Anaphylactic shock? No warning? He'd been stung before? Wow. Crazy.

"Your holiday stuff," Dan said then, "I think that was more about your dad. I think you're angry at him for not being around to take care of things. I think the stuff that happened this year is mostly just an annoyance to you. I think what you're feeling is way deeper than that, and what you really need to do is forgive your dad."

He then touched two points on my head, one on the back left, one on the upper right. Both were painful to his touch. "Okay," he said, "now think these three things and we'll work this out for you. First, think 'I forgive my dad for anything he did to hurt me.'" I started to cry, and Dan grabbed me a Kleenex and put his hand back. "Now, think 'I allow my father to forgive me for anything I did to hurt him,'" he went on, and, finally, "'I forgive myself for anything I did that might have hurt my dad. Anything I might have done to hurt him.'"

Dan kept his fingers on my head for a few moments, repeating the last one: I forgive myself. Finally he said "Okay! There! That's much better!", and took his hands away. "That last one was hard," he told me. "You are definitely your own worst critic!"

I lay there, dabbing at the tears that had run down my cheeks and into my ears, and a consciousness came to me. "I should probably forgive myself for getting cancer," I said, and started to cry again.

"Yes, that's a good idea," said Dan. "Let's see what we can do," and he brought his hands up to two more pain points on my head.

Awareness and care are a good start.

Wednesday, January 19, 2011

How Do You Choose?

We're heading off to Hawaii on Sunday to spend a week staying in a house in Kona with Ian's family, including our 2-year-old niece. We're very excited to have several days with her and really get to know her. Ian's parents, who, much as they love us all and are looking forward to the week, also love the Napili Kai resort on Maui, and so they left yesterday morning for 5 days there first (Ian and I drove them to the airport at 6:00AM, which is to say that Ian drove and I marveled at being up in the middle of the night), after a night at our house.

From what I have seen in the last ten years with Ian, his parents are like no other people on earth. They are very sweet and interesting and active and appear to be decades younger than they are, and I love them dearly, but their habits are not necessarily always what one might expect. Perhaps it's simply that they're better at knowing what they like and doing those things, and certainly there's no harm in their choices. But Ian and I were both entertained that they brought their sleeping bags to spend the night at our house, and even though we had the bed all made up downstairs, they insisted that they would rather just use their sleeping bags. At least they slept IN our house—several years ago, they stayed the night with N&K, and insisted on spending the night in their (own) Eurovan parked in the garage. They considered it to be the height of luxury—familiar beds, yet a perfectly flat surface to park on and complete blackness. But I think N felt that he wasn't really doing right by his parents.

Anyway, J, my MIL, asked a valid question about my blogging, and I thought you might all (lots and lots of you, still, it turns out!) like to know. A bit of a metapost, this will be. And so: J wanted to know how I choose what I'm going to write about.

There are actually lots of particulars that I think about when planning a post. For one thing, I don't want people to be bored, and so even though I frequently have episodes of anxiety, or mild nausea, or frustration, or deep sadness, or continual surprise that I need to sleep more than I used to, or (recently) extreme annoyance at the Insurance People, I don't write about it much. It's tedious enough to live with—who would want to read about it all the time? And so, I can't be bothered to put it into words very often. Also, my superpower is Full Disclosure, but even so there have been one or two things that were too painful, or too difficult, to share in this kind of forum. Of course, at the moment, I can't think of what they were. Maybe they were simply too scatological.

There are also a lot of things that, on the other hand, I do want to write about—I do want to share—and that day-to-day life (and travel) get in the way of and I run out of time . . . and then I forget what they were, even though I'm sure they were VERY insightful and wise.

But occasionally, I think about things that are VERY insightful and wise, and I have the right amount of time, and I'm not in some tropical or horse-infested paradise, and I sit down and write them out.

I'm not so sure, after all, that this was one of those posts.

Wednesday, January 12, 2011

How do you Regain Faith?

I was lying in bed last night, having had a pretty good day—stable MRI, rock climbing, driving the fun new Mini Clubman, SNOW (alas mostly melted away now), and my left breast started itching. It was just a normal body itch—we all get them occasionally—some weird firing of the nerve endings, nothing sinister about it. I wanted to scratch, and yet, my reluctance to touch my breast—to risk feeling an unwanted lump—was so great that I lay for several moments, steeling my nerve, before I had enough strength of mind to touch myself. Finally, heart rate elevated, holding my breath, I scratched my breast. It was a relief to obliterate the itch, and when I was done, I steeled myself still more and really felt myself up, doing a thorough breast examination. I found nothing unusual. I never have in the left breast. It's always been healthy, and yet I found myself picturing a second mastectomy, and what I would do after that. Get two prostheses? Go braless and boobless? The problem with going braless and boobless is that women's tops are sewn specifically to enshroud a bosom, and they look empty without one. So, go braless and start wearing only men's tops? Stop trying to minimize the effect of my permanently radiation-thinned hair and give up all semblance of femininity?

Rather than relax and go to sleep, my thoughts then roamed over my body and alit on the lymph nodes in the left side of my neck, which developed into several hard little knots over the summer of 2007, after my mastectomy, while I was traveling in Europe (instead of moving to New Zealand). They began hardening during an intense cold and upper respiratory infection that Ian and I shared—the exciting kind where you cough and hock up loogies the size and texture of banana slugs. I clung to the possibility that my lymph nodes were merely stiff with cold recovery . . . but the knots didn't go away until a year later when I finally started Taxol for breast cancer again. To this day, it's an internal battle just to touch my own neck—which, I can say tearily because I just made myself palpate my lymph nodes, seems to be perfectly healthy.

Ian and I just finished watching Long Way Down, a documentary that Ewan MacGregor and a friend created of a motorcycle ride from John O'Groats in northern Scotland overland to Cape Town. At Victoria Falls on the Zambezi between Zambia and Zimbabwe, the friend, Charlie Boorman, and one of the cameramen, went bungee jumping. I cannot imagine myself ever doing such a thing. It's enough of a challenge to grit and willpower simply to live in my body. I don't need to create situations to cheat Death.

Don't get me wrong—I love my body. I love my strength, my athletic abilities, my wit, my creativity. But I am far from trusting that those things will be with me as long as I am aware of them. Most of us are born having an innate faith in our bodies, in our abilities, in our fundamental health—because, for most of us, those things aren't tested for decades.

When they are tested, though—when we have a serious illness, and instead of succumbing we regain so much ability and health—how do we regain faith in that? Is Faith possible in the face of Knowledge, or are the two mutually exclusive? Does this kind of Knowledge necessarily end in Fear? I hope not forever, but that's where I am right now.

Knowledge can be liberating. But it can also be very, very hard.

Tuesday, January 11, 2011

I Not Dead

Hello Joel, my (perhaps) last remaining reader. It's been a busy life, my life, during the recent . . . well . . . always; but maybe a little more so in the past couple months. Happy busy and sad busy, joyful busy and heartbreaking busy. Busy overseas and under equators, and busy up in the living room or down in the basement. I want to live a full life—and it's full, boy howdy.

Anyway, a new year does spur one into new/different/revised/resumed habits, and here I am, blogging away again.

I was supposed to begin the new year with an MRI last week Tuesday, to see what may have been going on in my brain while I was standing upside down on the bottom of the planet . . . but Ian got a new job that began early in December (yay Ian!), and that meant we got new health insurance. The combined forces of the holidays, bureaucracy, and the US Government somehow failed to share with us any of the information we needed about that insurance so that I could go on with my day-to-day life as a full-time patient.

When I called GEHA on 3 January to find out what my membership number was because I had an MRI—an important MRI—scheduled for the next day—they informed me that Ian and I were not in the system, and that the MRI would need preapproval anyway, and that I should probably go ahead and cancel my appointment. Grrrr. Much time was lavished around on hold, by both me and by Ian, before we got things worked out, and my MRI had to be postponed (to 7:00am this morning . . . which is early for me these days . . .). But we are now officially members of a new health insurance plan. And, more importantly, my MRI was stable—so, nothing new showed up in my brain.

So, ultimately, YAY!

And then I went rock climbing.