Katie's BMT Updates

There are a lot of beautiful places to go walking in Marin. Here we are perched atop a low-lying Eucalyptus branch in Tennessee Valley, one of my current favorite places to go because it is easy to get to, easy walking and it's got the added bonus of seeing the beach at the end.

As you can see, the road starts off paved, but there's a place where it splits into two trails. Go to the right and it's a much wider -- and steeper -- fire road. It's great for bikes, but hikers walk it, too. Go to the left and it's a narrow "hikers only" trail. This route is roughly a flat straight-away, but a little longer in distance.

Lately, getting out and walking is probably my favorite part of the day. When Ian and I go together, he usually runs and I walk. We keep in touch via cell phones, but it's sometimes nice to be alone in the world, looking around and listening to my iPod.

All for now.

cheers,
Katie

I don't usually get up early, but when I do, I love to watch the golden light creep over the hill outside our window, revealing the greens, yellows and browns of the foliage in their most radiant light. It's almost like all the plants just came out of the shower and are at their very freshest. It is also really quiet, aside from the sound of the occasional bird, which really adds to this feeling of serenity.

It surprises me, how much I'm loving this morning time, because people who know me have heard me say again and again that I prefer the twilight hours -- and it's true. I do love to watch the sun sink into the horizon as everything goes gray, to black, to mist. It's especially nice with a glass of wine and someone you love to talk to.

For the last few days, I myself have been experiencing my own sort of "golden time." I can't exactly pinpoint when it happened, but I have started to really believe that I just might live through this and go on to live a long, regular life. Probably a lot of you had that faith all along, but a healthy future wasn't even something I dare dream about without holding my breath, until now.

I still have a long way to go, as for recovery, but something is different in my mind set. I've somehow managed to tap into hope and and I'm not letting go.

In little news, I went to clinic yesterday. All my blood count are good (the Nurse Practitioner even used the word "perfect" again) -- even my liver numbers are within normal range. Most importantly, real stomach pain is becoming more and more a trial of the distant past. I've even started some oral Magnesium pills, in preparation for getting off the IV drip (I am actually down to the drip every other day!). It will be a beautiful day when they remove my PiCC line completely. Caretakers and I will rejoice because it will be the end of "double coverage" -- one adult for Zach, one for me -- a great source of lingering consternation for everyone involved. (Our google calendar looks like a Gay Pride party planner all the time -- and we don't really even go anywhere.) Once my line is removed, though, there's less chance for sudden infection and so I will be allowed to be on my own for hours at a time. What will I do first? Maybe something a little like the opening scene to "Risky Business," but perhaps a little more "me?" I can't even imagine what it's like to be completely alone.

Happy days to you all,

Katie

This morning, just before dawn, Ian and I climbed Ring Mountain to watch the sunrise. It was very beautiful and we actually talked about future things that didn't involve cancer, being sick, cancer treatment or anything in the medical/health gendre, actually. Wonder that!

I am very anxious to be "done," but I know I've got some more healing to do. Believe me, I am doing everything I know how to do to kick some CLL ass! Keep your supportive vibes burning ...

much love,
Katie

I could call myself nocturnal if I actually slept during the daytime, but I don't. Ever since I started the wimpy steroids (a.k.a not Prednisone), I've been having trouble sleeping. It's so bad now that I take sleeping pills preemptively before getting into bed every night. (I've discovered that lying there until you finally admit that you need them is worse, because you're already agitated over your sleeplessness ... And if you're like me, that means there's some self-berating involved ... "I should try to be tougher -- join a Buddah Zen center or somethinig, etc. ... Oh but wait, that's right, I can't go anywhere." OK, end running mind commentary. ). And, now, it doesn't take just one pill anymore. I take an Ambien and Ativan together -- a combo that would knock out God -- and yet I always pop awake sometime during the early morning hours. Tonight I was awoken by Zach around 1:30am, who is just getting over the flu. He asked for water and went right back to sleep, the little cretin. Hey, maybe I could get a job as a rooster. Cock-a-doodle-doo!

Ah, all this too shall pass. I talked to my Nurse Practitioner about becoming addicted to these types of pills and she wasn't really as concerned as I was. It was a sort of a "Well, we'll cross that bridge when we get there" response and that the important thing is that I should be getting good rest. I find that the whole process of Western medicine is very much a pill for a pill, which counters the side effects of this other pill, yada yada. You take these at night on an empty stomach, these with food, etc. About the only natural thing I've found that makes me feel good is fresh food and walking. Still, I bet I could walk all over Mt Tamalpais and still not sleep. I would be tired, sure .... Oh yes, I would be tired ... But my eyes would just flicker when I try to close them.

I am trying a different approach tonight, though, friends -- I thought I'd come hang out with you and share one of the many random thoughts that whirl around in my head while I'm trying to sleep.

The picture at the top of the page was taken about ten years ago, maybe a little more. I lived in a very special house we affectionately called "Cumberland House" with a revolving bunch of four roommates -- all unique, engaged individuals -- all of us friends. Many came and went, but some of them --and some of their friends -- remain some of our closest friends today.

Some of you may also know the scandalous story about how my husband, Ian became one of these roommates and we lusted after each other for months because, in those days, it was so much easier find a partner than an apartment in San Francisco. It was a long developing courtship/friendship, replete with Swing Dance lessons. It was fantastic.

As for the rest of the house, we were like family and many of us would take turns cooking nearly every night. A lot of times, these "dinners" turned into impromptu parties, where those who played music played and sang, while the rest of us talked on the back porch -- having those kind of deep thoughts and heady ideas that only flow from red wine and other indulgences of youth. I often think of those times nostalgically and then wonder about all the people I'm no longer in touch with. What are they doing now?

Well, that's my random nocturnal memory for the evening. I'm going to try and get back to sleep now. Sleep tight all and sweet dreams ....

--Katie

By the way, so this is what Zach thinks of Sarah Palin ... Har har. No, seriously, this is what he does when you ask him to "make his tuna face." OK, that's my adorable kid moment of the day.

Something very significant has happened in my line of recovery: I got my PICC line out! Yes, yes, no more wrapping up my arm in the shower, no more Magnesium pump, line flushes and dressing changes ... But most importantly, no babysitters! That's right, I am free to be left alone for hours at a time, which just makes life a whole lot easier. For one, it seriously simplifies life for my caregivers. As some of you might recall, we always had to maintain "double coverage," one person on hand for Zach and one person on hand for me, just in case of that off-hand emergency. Adhering to this policy always involved negotiations and a lot of Google-calendaring to keep everything straight. In a sense, everyone felt trapped ... and now we are all "free to move about the cabin." We are ecstatic. Mind, I still have a lot of restrictions, but don't underestimate the power of being alone, truly alone. It's different than sharing space in a whole house where you can't see each other and you're not interacting. It's genuine freedom.

In general, though, my overall well being has been good. There's a trend: I feel great in the mornings and, around mid-afternoon, I start to crash. I get shakier and shakier and then my limbs start to ache like I'm coming down with the flu or something. I often think of that commercial "I've fallen and I can't get up" because that's what it feels like to sit down at the end of the day.

In the mornings, though, I've been loving exploring all the places to walk in Marin. Last Saturday, Marlene showed me King's Loop, a trail that starts right from a residential street in Larkspur and winds down into Baltimore Canyon. Very excited about my new find, I decided to take Ann there yesterday. I don't know if it was an omen, bad luck or just stupid on my part, but while we were walking, I casually mentioned that, out of all the people we know, I think that we would be voted "most likely to get lost in the woods." Well, wouldn't you know. I don't know how it happened, but the walk started to seem longer than it should and then we started to think we were seeing familiar things. You know how it goes:

"You know, I think I recognize that tree."

"You do? I don't know. I'm sure this is the way."

You keep walking, eyes darting to every tree, branch and potential landmark. Your confidence begins to wain ... Until you see it: The-landmark-that-can't-be-denied.

"Uh-oh. I definitely saw this huge feather here. We are going in circles."

To make a long story short, we walked and walked until we ran into some kind of forest worker who was able to point us down the hill in the right direction. We didn't pop out in Baltimore Canyon like we were supposed to, but we did end up where we started. Needless to say, our walk was much longer than it was supposed to be and I was wrecked for the rest of the day. It was still fun, though. And, sometime soon, I'm going to have Marlene show me the way again ... I won't give up, by gosh damb-it.

But speaking of being lost in the woods, let's get political for just a moment (indulge me). What's wrong with you America? The Republican Party is the establishment -- they don't get to "be for change." McCain voted with Bush more than 90% of the time. He plans to renew Bush's tax cuts for those with incomes of $250,000 a year or more and he's got most of Bush's cronies (including that evil-genius Karl Rove -- the king of spin) already working for him now. How is voting McCain into office going to make things any different? I am very concerned, America, because these guys don't have your best interests at heart. How are things going for you now, as opposed to eight years ago? Well, I can't necessarily blame the Republicans for my cancer, but I can say that, economically, I was in much better shape. Be careful, America, the McCain people are trying to rile you up with patriotism and feed your hard earned money to big corporations and those who already have too much. And don't even get me started on Sarah Palin -- as a person, she is just not qualified to be Vice President of the United States. You know this.

Well, I don't want to turn this blog into a political diatribe, so I'll wrap it up and try to stay off the topic from here forward: Vote for Barack Obama and Joe Biden. They are our only true hope for change. Obama plans to cut taxes for 95% of the population (that's probably you), strengthen our foreign policy, ensure healthcare for all (which doesn't mean, by the way, taking away/altering the healthcare for those of you who already have it) and putting strength back into our economy without increasing our National debt. The Bush Administration has acted irresponsibly over these past eight years, actually making Government bigger than it's ever been. As I type, our financial institutions are crumbling around us ... What does that say to you?

At least look into it. Don't get lost in the woods.

much love,
Katie

I've been making this new mix of songs for Zach. Along with the kid's stuff, I also like to include world music and old catchy pop hits from the past -- you know, the stuff on the radio that everybody knows and is impossible to get out of your head. Yes, yes, yes ... People who know me will know that listening to Top 40 flies in the face of my indie nature and tendency to seek out and exalt obscure bands (especially British). But for kids, who love repetition and like to bounce, pop hits have their place. Of course, I've also included some of the classics like Rose Royce's "Car Wash," Tom Petty's "American Girl" and countless Beatles songs. The boy's got to have an education.

Well, the result is that today, I can't get The Bangles "Manic Monday" out of my head to save my life. I think my head is going to explode. I can see it now:

Putting together song lists is just one thing I do with my days. I still go out walking, read books, follow more news than I'd like and watch some television and movies. I also have a new (actually I'm revisiting) addiction to Yahoo's Text Twist. It's an online game where the goal is to make words out of six given letters that you can "twist" around at the touch of a button. On the left-hand side of the screen, there are empty boxes representing all the words they want you to find. To get to the next round, you must find at least one six-letter word. If you find all the words, you get mega-extra points. I have some vague notion that this game is keeping my mind sharp, but in reality, it has kind of a nice numbing effect.

Tomorrow I have clinic and I'm getting a bone marrow biopsy. They're going to stick a long needle into my hip bone to collect a sample of my bone marrow to see if they can find any CLL cells. I've had this procedure before and would describe it as "uncomfortable," not painful. They numb the area really well and give you something special to make you forget you're having your lower back plunged like a clogged sink. I don't know when I'll get the results, but I am hoping for no CLL cells.

Lastly, I am loving having my PICC line out. It is healing nicely and is no longer tender to the touch. My next goal is to get off the immunosuppressant drugs -- something that the nurse practitioner says will probably happen roughly three months from now. Ideally, they'd be weaning me already, but with all the GVHD I've had, they are holding off. Waiting makes me a little sad, but I know it's a "do it once, do it right" situation. You better believe that, when this is over, I'm never getting cancer again.

much love,
Katie