sudden blast of reality

Chances to get it right

2006-05-31T19:35:00.000-07:00

I have always had this naïve idea of what death was. Especially the kind that is preceded by illness. Hollywood portrays it as some thing that actually draws people together around some common cause – that of helping the ill one ease their last days here/ Wow, have I found that to not be true. One, what if you don’t die right away? All these people come together with that one cause, which doesn’t really exist for weeks, months or maybe years.

I know of one person’s parent who had cancer, and was “dying” of it for 7 years! How many times can you say goodbye? Furthermore, as the ill one, how long can you go on being teased by death with the promise of all it brings in the afterlife, only to continue to have to endure earthly pains, joys, struggles, and all that? I, for example was given 2 months to live initially. At that 2-month mark, I had been through a terrible bout with chemo, and actually looked forward to more, if it was going to make me better in the end. Well, it didn’t and wouldn’t. I have no chemo any more, or any other treatment. The goal is to keep me comfortable as long as possible. Hey, I am not in pain. I have, however, experienced some bodily changes that cause me to see and experience myself differently – and he treatment for each of these, has proven to be helpful in alleviating discomfort.

The docs are surprised at how “well” I am doing. My spirits are high – no, I am not awaiting a miracle or some other magical cure. I am not going to Mexico for alternative treatments. I am simply just waiting. I am a goal-oriented person, and tend to see things as having one best answer, and feeling responsible for picking that answer. Had a great discussion tonight with my partner about how life gets us to decisions. Do we make several “perfect” decisions that get us to the right place….or is life really just a serious of millions of smaller decisions that move us all over creation to get us to where we are. In truth, I have always fancied myself to have the “right” answer – eventually. Yet, when I look back on my life, I see a set of random, spontaneous decisions that have given me the richest set of experiences. Not goal oriented at all! And the ones that I have tried to carefully orchestrate have been the most frustrating or forces.

Then there are those things about which I have actively made the little and big decisions to NOT deal with. Those are the most frustrating and disappointing in that they always come back to bite you. They are the lessons that life keeps giving you over and over until you hopefully learn them. I am just not that bright. I both love and hate analogies. Hate them because it forces/allows me to sum up all things into one trite cliché. Like – “ the boiling frog”. You know the one about putting the frog into tepid water then turning up the heat…he doesn’t realize he is cooked until it is too late. Well, are we really as stupid as frogs? Don’t we KNOW that the water is getting hotter? Well, some of us are. I, unfortunately, am not always too bright.

I knew years ago that my father had control issues with me. That is fine as a child. But, not as a 45 year old, otherwise successful, woman. I still let myself get bullied, manipulated, shamed, guilted and yes, controlled, by him. What is up with that? I am not a yeller, but I do walk away from people like that whom I meet in my life. I am smart enough to feel the water getting hot – or better yet, to smell the gas as the stove turns on. Can I blame this on my dad? Sure for the first x years of my life. But when do we start acting like grown ups and get over our upbringing? When are we smart enough to read the signs and actually DO something differently as a result? Shame on me.

I am a strong, smart, successful person in most walks of my life, and plenty independent overall. Yet I cave at the idea of having to stand up to my father (or pick another such person in my life) and actually DO something different that defends my own values and beliefs – not to mention others around me who I value. It is embarrassing and humiliating at the same time. I wouldn’t let a stranger on the street assault my dog, yet I sit and take attacks on those and me closest to me from my father. I keep waiting (45 years not) for that elusive apology from him…. not a back handed one. One, which says I really did/said the wrong thing. I really hurt you and I am sorry. AND he says it to all around me whom he has damaged. I can’t apologize for him to them…it is meaningless, and it isn’t really how he feels. That’s because he doesn’t respect me. Nope, I am his lap dog, which is what he expects me to treat others like – or to be treated.

You know, about 25 years ago, I had a very dear friend. Sure she was eccentric, and rich (both of which I envied at some point. I thought eccentricity was a license to be and act free, and money certainly wouldn’t hurt in that case). I liked hanging out with her. I enjoyed 30,000 acres of ranch outside of Austin. I enjoyed their in-town pool and sprawling old house. Even more importantly, I enjoyed her company, our conversations – and learning that in the midst of all I envied, she had a controlling father, rugged relationships, a strained relationship with her sibling, and alcoholic or 2 in the family. Not that I reveled in those things – but it was a relief to know that I wasn’t just the only one with secrets. At some point in our friendship, my dad told me that I needed to be aware that she just saw me as she would a “pet” – not a friend. How could a person of her wealth and social prominence ever be drawn to me as a friend? Just be careful. So, I was not worthy, I was demeaned, I was shamed, I was belittled. Did I stand up for myself??? Of course not, I took it and actually incorporated that into my belief system all those years ago. I have fought that my whole life since. How sick is that? What’s even worse is that I have incorporated it into how I treat others around me – ones I love.

I guess it all gets back to those dying days. Or my dying days. I am not yet dead, and have a chance to continue living – with all of life’s challenges – until I get a few of these left over lessons right. And I won’t get it right once. I have to get it right many times, over and over, and I will still mess up. I can apologize to all those I have hurt. It may or may not be enough. I can own my part in what has gone wrong – that through my inaction I caused. It may not be enough

I have the “gift”, I have been told, of knowing that I am going to die imminently, but I don’t know how long that will be. Honestly, I felt cheated that I had to live longer than my expected 2 months. After I got over the fact that I had “beat” that deadline, I realized that I had fully geared up to leave. I actually felt punished when I found out that I am getting stronger. No, not cured. I will not be cured. But, I have time left to really tie up some loose ends, to say heartfelt goodbyes, to try to repair some of the behaviors I have resented in myself – those which have unintentionally hurt others around me that I love. Can I do that? We’ll see. It’s totally up to me. No deflecting onto Dad. Will the loved ones accept it from me? We’ll see. Sometimes there is too little too late (ok, yet another trite cliché). I hope this isn’t one of them. I don’t have a lot of time or chances to get it right this time.

Creating reality on your own terms - yet again

2006-04-16T00:22:00.000-07:00

I had a breakdown last night. Ending up with about an hour on the phone with my dear boyfriend's compassionate heart and words through his sleepy, blurred mind. I feel like I am just all about cancer. Everyone cares so very much, and I get such wonderful thoughts, prayers, visits, everything unimaginable. My boyfriend's sister (she told me yesterday she just tells the nurses that she is my sister in law - she's great) and her family all came in to the chemo treatment room yesterday and decorated me and my hundreds of drip bags with feathers, faces, sticky foam creatures. People stared at them as they huddled on the floor making all of these things, but started coming over looking at how to get in on the action. It was a hoot!! Bottom line in my hours of need I am getting such loving care at home, on the emails, on the phone - pick a medium and it is being used to get to me.

So what's to break down about? Well, I fancy myself to be one of the most independent people around. I want a wall painted at 2 am, I just get up and do it. I want to move a piece of furniture, I just do it. I am hungry I eat. Wanna see a movie, just go. Suddenly I have cancer. Suddenly I have a PICC line in my arm that used to curl 30 lbs, now able to take a max of 5 lbs. on a good day when I have energy. I want to eat, I ring a bell or holler from the next room. I have to pottie, I roll out of bed onto a pottie made by a company called "invacare". Someone else cleans it for me. I want a shower, it takes 50 minutes to get my bandages saran wrapped water tight, and I am still petrified. Shaving legs is definitely a sit in the bathtub with 6 inches of water thing. My biliary drain springs a leak, and I have to have help to change the bandage. You are no longer a person, you are a clinical specimen - and you just don't care any more. nakedness at 45 in front of your dad is, well, embarassing the first time, and merely clinical from there on. Pooping becomes a hot topic. Weighing in 3 times a day is a highlight. Taking pills 4 times a day, that someone else has organized, is an event. You may be getting the idea, or maybe not. I am not sure I would if I were not the one doing it. I am sure everyone's experience is different.

Dear boyfriend says to me with simple clarity, You have cancer, You are not cancer, Meaning will come from all of this that is happening. I feel like I am sitting on buddah's knee - getting the first 2 clearly, yet struggling with the meaning part. That's the very thing I am struggling with. I have a job, from which I am on medical leave indefinitely (yes, that time frame is hard for a goal oriented gal), I can't work, I can't define myself as my work. I can't go work at an animal shelter for this external plumbing that I have that some darling homeless pup could destroy with the bat of one gentle paw. One drug makes my vision blurred, so reading is a challenge, and when I lie down to take in the news, I drift off from exhaustion. A dear friend of mine's words echo to me (she never said this to me, but to others who felt sorry for themselves)..."well, cry then!"

So, cry is what I did. And sought a way to find meaning and definition. Meaning became a little clearer when I realized that all these loving, caring friends and family were rushing to be by my side in such giving and supporting ways. They do this out of love for me, not because I was some corporate hoo-ha, drive a jag, travel wherever, etc. They don't care, and never cared about any of that. They are the ones that matter, not the "stuff". All of that frees me to reframe a definition of what I want to do and be on the other side of this fight. And what I want to become during the fight.

I want to reclaim myself - parts of me I let fall away over the past few years. Things about me that got soft, that I just let roll over me. Shit that I took that I don't normally even consider taking. Stuff I got upset about that in reality are dumb. If the other person doesn't care enough to change it or do something about it, why am I beating my head against it??? I now just have to take whatever time I have left - 2 months or 10 years - and be who I am. My physical body is just a shell of what I used to be. So is my passion, my esteem. I cut all my hair off, of course. Isn't that what we women do that shows a big change has started? (haha)

Now I get to make the time to see what else I want to change. Life changing things. Sure, painting a room is gratifying, but it masks the fact that you really want to knock out that wall and put on a deck with french doors that allows the air and sun to come in. You can clean carpets, but replacing them with something bold that you love is different. I need to find the walls I want knocked down, the carpets that need replacing - and get in there and DO those changes. Some people won't like it, but I will. Those people who matter will love me more. I know now how short life can be. And that I should really be bold enough to live it the way I want. Watch out!

conquering the battlefields on your own terms

2006-04-15T23:48:00.000-07:00

I have been out of the hospital for 2 weeks today. I have gone from 105 to 116 lbs in one week. THAT has been fantastic. To be one of the few women in the western world who actually jump for joy each day as the scales tick UP! Let me assure you that the supermodel waif look just isnt really that attractive when you catch a glimpse of that shell of a body you worked so hard on for years just wither away in days.

I have had some great help this week putting on this weight. First, I couldn't restart my chemo treatments until I had something on my body. As I could literally FEEL that damned tumor sitting there daring me to doe something about it, I was highly notivated, with lots of anxiety, to put on weight any way I could. So, I took the healthiest route I could...think of every thing comfort food that I usually wanted and couldn't have before, and eat it in small doses 6-8 times a day.

Now, you may recall, that I had this well, crazy bitch chef hired to do this for me. The first trial was hard for all involved. She was trying to see what I really wanted, I was to give yes/no/why feedback to her on it. During her first attempt, I was really responding horribly to all food, especially food that was new, oddly seasoned, or I just didn't know what the hell it was. So, it was a waste for all of us. The second round, I was able to be more specific in the "comfort food", normal spices, etc. vein. She did a fantastic job!!! Some of the best fried chicken I ever had. There were still some odd things in there that I didn't know, or like, but that's part of the learning process. Oddly, as I was enjoying the short ribs (awesome stuff), she sends my boyfriend/partner and email that she is a vegetarian and is not comfortable preparing all these things in her apt. Would I be ok adding some more vegetarian to the mix. OK, by me. Well, the next batch is totally vegetarian, oddly spiced, and I just couldn't take it. We had to pull off the highway shoulder to puke one night. Let's say we parted our ways.

Then I ended up in the hospital for a few weeks (No, not due to her food!!), and I got to sample some pretty good things at Stanford's kitchen. Plenty of home cooking and variety for me. got me through. When I came home, I really needed to nurse my belly back to normal, and , yes, comfort food was my safety net. My stepmom arrived and the tricks were done. She used little ramekin bowls for my "serving size" and never asked me if I wanted more!!! It was perfect. I started coming up with a new idea several times a day. So, now the pantry and fridge are stocked with - hang on - mac and cheese, beefaroni, ravioli, spagettios, chicken broth, Campbells bean with bacon soup, jello, apple sauce, apple juice, lots of gatorate and water of every variety known (yes they all taste different), ensure, egg salad, steamed dumplings, coconut shrimp from Outback, homemade apple pie, eggs, hash browns, frozen waffles, cheap frozen pizzas (forget digiorno or whatever), cream of wheat, ice cream with root beer, AND the pillsbury doughboy's orange glazed cinnamon rolls.

And I EAT THEM. and I put on weight, and I started my chemo again yesterday. I have more energy, and no nausea than in the past 6 weeks!!! Now, is this a sound long term diet, no. But I am still not allowed fresh fruits and vegs due to my colitis issues. But it is making me alive right now, and that is ALL that matters.

Because my goal is to be alive to fight the next battlefield and win. And I will, I feel that for the first time really in weeks. PLUS, It was Feb 16 when the transplant doc told me that it is unfortunate, but I have about 2 months to live. I guess I won that battlefield, huh? I will live to see my 45th birthday in a few weeks - the next battlefield.

Out of control of reality

2006-04-07T20:09:00.000-07:00

A lot has happened over the past week and a half. Some of it I don’t even remember. Let me explain…about 14 days ago, I realized that I was feeling exceptionally nauseus, very tired, even unstable while walking. At night, I have to get up and drain my biliary bag. I found myself fumbling around in the dark, running into walls, and missing my footing on the little stool I have to boost me into bed. I was scared.

Last monday, I was really bad – that night when I got up to empty my bag, I barely made it to the toilet. I ran into every wall within 6 feet of my path. I was dizzy, and my feet felt like pegs. As I was making my way back to bed, I couldn’t even find the bed. Suddenly, I feel myself falling, and feel my head crack the ground. I saw stars. I passed out briefly. I remember crying out for help, unable to move. Douglas rushed around to find me sprawled on the floor not moving. I laid there for a few minutes before he could even help me up. There was blood on my face. I must have hit something on the way down. I got into bed and passed out. Ok, I was scared to death. I have never fallen.

Next day, Tuesday, I was in for my third chemo treatment. I could barely dress myself. I had to. I had to get there. Fortunately I had a driver to take me in. I was delirious. I took my chemo on a bed, rather than the chair. I had the most horrible hiccups that hurt and wouldn’t stop for hours. I asked them after the treatment to fix it. They shot me up with thorazine, at which I immediately passed out. I soiled myself and didn’t even know it. I tried to leave, to get in a wheelchair. I fell into the chair, and mom saw my eyes rolling back in my head. Suddenly a half dozen docs appear. They get me back up on the bed, asking me questions…most of which I failed. They sent me immediately to ER. I don’t really know all of this from memory. Rather, from mom telling me what happened. Most of the next several hours are a blank or a blur. I didn’t even know that mom and Douglas were both there. I remember getting a CTScan. I don’t know why. They checked me into ICU. I don’t remember any of it. I was in a really bad way.

So I'm in ICU for a few days...

2006-04-07T20:08:00.000-07:00

So I am in ICU for a few days. I think they were monitoring me to see if anything else was going to happen. There are teams of docs here. It is the most wonderful thing. There is a primary team. There is a GI team. There is an ICU team. All of them visit you and look at you from a different angle. I was deemed total bed rest. I had to go on bedpans. A lot. The whole time I am wondering what is going on. I discover at some point that my sodium counts were less than 100. What that means is, they have never seen someone come in awake at that level. Most people are in a coma by this point. At least it explains how awful I was feeling. By the way normal is 135-145.

I am down to 112 pounds. I am healthy at 127 – 129. In the middle of this, my ulcerative colitis starts to act out. I am going into a full blown flare up. They do a flex sigmoid exploration. I slept through it on my own. They do this right in the icu room. They immediately put me on steroids.

Then I go into a regular hospital room. I was actually liking icu…you get lots of one on one attention. I found that the treatment in the regular hospital is spectacular. If you are going to be in the hospital, you have to be at Stanford. They work on getting my sodium counts up. In fact every count is messed up by now. Oh, I forgot…somewhere in the er I got 2 bags of blood. I guess I was in there for a while.

As my sodium counts start creeping up, my ulcerative colitis is brewing to a boil. It gets worse than the worst I was before being diagnosed with it 10 years ago. My GI team is on the case non-stop. Pumping steroids , running fluids in me, checking blood levels every 4 hours around the clock. It keeps getting worse. They put a little pottie next to my bed as my emergencies allow me about 1 second to hit the toilet. I am going every 15 minutes. At least I am not nauseus, and my sodium is going up.

My red cells are down again, so I get another bag of blood. My potassium is off, my blood sugar goes up with the steroids – so I get insulin. Oh, and one side effect of one of the chemo drugs is a horrible rash on my face. My butt is raw. I am scared again. Will I ever get better? Is what is really happening is my organs are just shutting down? They can’t figure out what is the source problem. And these docs are good. No, fantastic.

I am taken off any food or drink by mouth. NPO it’s called. Oddly, I don’t even get hungry. I have food fantasies though. Remember those Pillsbury apple turn overs that come in a can? I want them bad. How about one of those hot dogs with chili and cheese and onions that you get at that stand outside of the Home Depot??

Today, one week after that ill-fated Tuesday, I get myself back on a liquid diet. At night I added bread and rice. Tomorrow, I get real food, but I chose all bland food. Cream of wheat, bread, mashed potatoes, dry pasta, you know. It all sounds fantastic to me. I have to do it slow to see how my gut can take it. I have had only one accident – and I go every 3-4 hours. Progress. I can’t leave until I am passing normally. Without incident. My chemo has been put off a week now. I am really disappointed about that.

So Much Love

2006-04-07T20:07:00.000-07:00

This is worth a separate entry. I have received so much support and love throughout this all. My dear friend Carrie came out from north Carolina to spend a few days with me…sitting with me in the hospital. It was awesome to talk to her like we have not had the chance in I don’t know how many years. My mom has been here every day all day. Douglas has been calling the docs every day, calling me, coming to see me. I have gotten cards, emails, calls from people everywhere. My room looks like a florist shop. You can’t know how much this all means to me.

All the nurses and docs make me feel like I am their only patient. I don’t know how they do it.

two down....

2006-03-16T20:24:00.000-08:00

had my second chemo treatment this week. pretty uneventful. in fact, i actually had more energy that day. bummer was that the awful bile drainage tube was leadking like crazy all weekend. i would wake up and be sleeping in a pile of wet, bile drenched sheets. only to have no alternative but to get up and deal with it right away. i am ruining my good sheets. very discouraging. so, i got to have another procedure on wed (after chemo) in which they installed a second one, this one into my right side. at least there is no leaking now (knock wood).

laura and her family sent me this wonderful care package. i got had crafted bears (oh so cute - tyronne decided that in a fit of enthusiasm he would carry one around - which lasted all of abaout 30 seconds) I got these great 3 cup cups, with lids on them. perfect fro travel and water, or any other such beverage. she crafted these little pouches that hang over my shoulder like a purse. they rock! keeps the bags hidden in a cute way. see, they always droop out under my ever so long shirts, leaving me to feel constantly self-consious in public. i have some cute sweatshirt/pants types of outfits, but the bags are a bit protruding,,,especially when they start to do their job and get full.

i have had 2 days this week so far where my energy has been up for at least 1/2 the day. (this is one of them). the rest of the time, i lie around hoping to doze off. had a pedicure today at my favorite place. it is quiet, i sit in an overstuffed rocker chair, and i got to actually doze off a few times.

woo woo!! one of the meds is supposed to make me break out in a "rash" - otherwise described as the worst possible case of teenage acne. i think the rash is starting. apparently the patients on whom it is most effective also have the worst breakout. hardly seems fair. i don't think laura can craft a little velvet bag to camouflage my face. :(

oh, at mcdonald's the people in front of us were getting one of those dairy queen style choc dipped cones. i wanted one....then realized that one side effect is that i could have a very severe reaction to anything cold. making my throat swell shut. bummer, again.

well, it's been a great 2 weeks with dad here. he'll be back with delma next trip. mom is coming in for a few weeks starting saturday. it is really great to have someone here all the time. even for an introvert like me. it's just so hard to do little things. climbing up the stairs winds me after 1/2 flight (that's 10 steps) such that i have to sit down and rest.

gonna kick this thing's ass. one woman i heard of refused to belive she had cancer, with a 2-3 week prognosis. 4 years later, she died of a heart attack, with an autopsy revealing no signs of cancer. huhh. i don' tbeleive this is in me either.... i get to choose an alternate reality.

Whose reality is it anyway?

2006-03-11T18:50:00.000-08:00

I have this knack for saying the right things wrong, and usually the wrong things wrong. How can that be when my intentions are always for the other person? I have learned that somehow it ever so often comes out like it is all about me. I compete silently with others for “lowest self confidence” award. So, when I hear that I always turn things into all about me, it breaks my heart. I grew up knowing that I never wanted to put anyone on the spot, to not hurt people’s feelings, to help people not feel so bad about what was going on with them. So, I’d turn things into “my” issue. See? If you thought that I was the one with the problem, then you didn’t have to feel so bad about your problem. AND if you felt like it, you could easily offer up that you feel the same way...like not so alone.

So, I “grow up” and find that my self deprecating strategy actually backfires, it pains me, and really bothers me. This empathy thing that I find so many people need, is hard for me. It feels like I am detaching from the person. That’s my issue, I know. When people empathize with me, I often am uncomfortable. I want to hear how they feel, what they have experienced. Not to help me decide what to do or how to feel, but to sort of validate how I am feeling. Then, I can open up.

I guess it all boils down to what the other person wants and needs. How can I be so abysmal at that? I try so hard to figure it out, that it looks like I am detaching and don’t care, and don’t listen, and don’t pay attention. When I love someone, I think about them all the time. Be that my best friends or my partner. Yet, these are often the very people who think that I am not paying attention. What am I doing wrong??

Who to tell what, and how much?

2006-03-11T18:27:00.000-08:00

I made a preliminary list of people who get all the details of my cancer (very limited), people who get some (a little bigger), and people who get not much of anything. There are also people who got a lot of info early on, and I am not comfortable giving them any more. I don’t know why. I think that I just feel too vulnerable. Like if they know too much, they will know something about me before I do. I don’t like it if others know my fate, and I don’t know it yet. Often that’s because I like to live in my own delusional system.

The people that matter are getting more details…Usually I decide how many details based on how much energy I have at that moment. Or, if I just don’t know enough, or don’t know how I feel about “it” at that moment. I don’t want to open that discussion. Truth be told, all the people in the “more details” categories are not asking me prying questions, not giving me advice, not having pity on me. They are simply offering words of encouragement, telling me how strong I am, acknowledging that “of course you are scared.” Notes, cards, flowers – all things I appreciate. I love those emails, it makes me feel connected. And the flowers are beautiful and smell good.

I feel sort of guilty with these close friends’ attention. Like they have very busy lives (which they all do), and I don’t want to impose. I DO need their help though, and couldn’t make it through this alone.

I guess I just have to figure out how real to be with the people who ask “how is Jeanne” – I want them to know I am sick, if they ask, but I am afraid of their reaction, and how much details they want to know. But, you know, people are amazing, they always seem to know just what to say, what to ask, what to not ask or say. People are wonderful.

end of the first week

2006-03-11T18:14:00.000-08:00

i have had a grueling week, after all. during the chemo day on tuesday, i did pretty well, in terms of how i felt i mean. the next two days were consumed with the checking out and repairing of my bile drainage tube. it keeps leaking which his horrible. it is wet, annoying unpredictable and smelly. sorry to be so frank, but it's what i live with. the worst part was not being able to eat for nearly 2 days in prep for the surgery that finally happened around 4 pm on the second day. I am already down to 113 from about 130, and who knows wht those 2 days did to me. yesterday, i was a basket case. exhausted and not hungry but needing to eat. restless, and couldnt find a comfortable way to sleep. i have a chef cooking meals, but i can't eat them. she is a vegetarian, so things are loaded with stuff from those stores that are called something like co-ops. i can't eat it. too many odd flavors. i just want chicken soup and turkey and dressing. i am not fancy on a good day. we are getting that adjusted though. today, i woke up to a bit of an appetite, which i supplemented with anti-nausea meds. about 2 hours after i ate, i went up to wash my hair and up came all the food i had so dutifully eaten. shit. i watched the pounds get flushed down the toilet. i can only hope that my chemo pills were digested at least somewhat. as the day passed, the tube leaking stopped, and i have been able to progressively eat more food. tentatively as i don't want anything to come b ack up. i have a lot of help here, and really need it. my partner and a friend came back today, to rejoin my dad in my care. dad is staying a few more days as i just really need the help. i am trying to line up people to come in over the next several weeks just to be covered. i am worried aabout not eating, and about getting lonely.

smelling bile again, gotta go.

First Day of Chemo

2006-03-07T18:58:00.000-08:00

First day of chemo.

The first 2 hours were spent getting a PICC line into my tiny, uncooperative veins. One arm took 3 jabs. The catheter kept going up my neck instead of into my chest. She’d have to use the ultrasound to find a vein, then go in blind, stitch it up and we’d traipse down the halls to x-ray just to see if it was in the right place. Seems that in my left arm there is some crimp in the vein which causes the catheter to go up instead of down. We gave up on that arm, and went to my right arm, into which it went great the first time, in the right direction. Success. Now I don’t have to get stuck every week when I come in for IV drips, or to take blood. It will stay in months (and some people have had it for years!). That was a draining experience, but the nurse was great. A veteran. My dad and partner were waiting in the kinda dull and noisy waiting area, with no internet connection. So much for getting work done.

The patient advocate found me and introduced herself. She serves as concierge, chief point person for any questions I have, and generally navigating the place. She was fantastic…a nice surprise. She also gave me a bad with a Stanford blankie. They make you feel like you are the only patient here.

I came up to the chemo infusion lab. People are everywhere, lots of cancer patients, all sitting up in these lazy-boy types of chairs getting drips. I wanted a bed. Instead I got a window seat. Once again, feeling special. I didn’t realize how spooky it would be until the (wonderful) nurse started explaining the process. Arturo. He pulled out a binder that he had made for me, with a calendar, all my records, etc. He went through every med and the plan for each one, in detail. All was going quite well. Until the actual drips started. The saline drip is one I am used to. No biggie.

But then along came this huge glass jug. He taked me through it, side effects, etc. As he hung the bottle up there, I felt my eyes welling up, just a tad. He whipped around noticing it right away. I just looked at him, and he leaned over, held my hand and told me this was the beginning of getting better. I’ll do fine, he says. Not to worry, Dr. Fisher’s patients always get better. My partner was right there with me on the other side of the chair, saying all the right things. Dad was right there at the end of the recliner. I’ll be fine, but man, looking at that bottle hanging upside down, and watching the first drip go was sobering. Scary.

After it started going, I just settled in with a movie, which occupied me for about 1 ½ hours. I have about 20 minutes left on this bottle now. Amazing how I feel better already. I have one more bottle after this one. 2 hours per bottle. This has been a long day already. And still about 2 ½ hours to go. I keep eating stuff. I have been eating on a pnut butter sandwich all day. It’s finally gone. Sustainence only. But the day started off badly. We went to a wonderful steak house last night, and I ate all I could eat. It was really good. But something didn’t set well on my already anxious stomach. I was nauseus all night, up and down, feeling like I was going to puke any minute. I wish I had as I likely could have slept some. When I got up for breakfast, I poked down 2 eggs, ½ English muffin, apple juice and some meds. I went up to get ready, and here came all that which was causing the problem last night, plus breakfast. Not a good thing, in that I need every calorie I can get.

Met with the nutritionist yesterday. She was good, but made me nervous as a cat, she had so much energy. The irony is that after my meeting with her, I went into a total crash, and could barely make it home. We got some food at a local diner place, which sorta sucked. I went straight to bed after that. My weight yesterday was down to 115 from 117 a few days ago. The important thing to know is that 2 weeks ago I was at my normal weight of 127. That’s a lot of weight in a very short period of time. I am supposed to just eat anything and everything I can that has fat, protein and carbohydrates in it. Fruits and vegetables are fine, but they don’t pack on the calories, and I am not worrying about “preventing” cancer now – my body is in full blown war mode.

My second bottle is getting ready to be hooked up. I have been here since 10 am, and it is 6 pm….I have 2 hours to go.

This is dull, but not so scary now. I am interested to see what, if any, side effects I will have. I come back next week for 4 more hours of this, adding one med to the cocktail. Then I just take pills for the next week….week 4 I come back to see the doc to see how I am faring on the chemo…and we will hopefully start the cycle over again.

That stent that they couldn’t get in in Scripps…One doc here wants to try the stent again sooner rather than later. My main doc wants to hold off…keep the external plumbing, and see if the tumor shrinks enough to let the bile flow out on its own. That may take a minimum of 2 cycles. See, this bag doesn’t bother me aesthetically so much any more. Everyone has some affliction – on me it’s just more visible. Some people stare a little, and I am really kinda tired already of wearing long, loose sweatshirty types of things, but at least they are new and cute. Not designer, but cute. I am tired of the inconvenience of the bag and the tube while sleeping. I have to lie on my back, and I am a side sleeper. Maybe I’ll get used to it. Plus I have to get up around 3 am to empty the bag, after which I can’t get back to sleep – nor can anyone else in the room.

Our dalmation is a total snuggler, but is unpredictable in her jumping up and down behavior, and I can’t risk a paw in the gut, leaving me with a tube dangling. She is devastated by this, and looks at me longingly. Breaks my heart. She hardly comes up to get petted any more…like she is afraid of me. Poor girl. Brown Dog seems content to sleep on his bed on the floor, so he is not a threat. He is not a bed jumper as a rule.

I want these drugs to work fast. I want them to work. What if they don’t? I can’t face that question right now. The doc keeps talking in the “when” rather than the “if.” That’s encouraging. But I know there is a real chance that things won’t take.

the mass is real

2006-03-05T16:57:00.000-08:00

the other day during the colonoscopy, the doc/oncologist asked me if i had felt the mass. i said no. i didn't know where it was. you see, the drainage tube coming out of my abdomen is slightly to the left, and the liver is on the right. it's confusing to me. the liver is very big, you know. anyway, he is pushing around where the mass is. i love this doc....well the whole team. see, i have a "tumor board" of specialists at Stanford who are all intimately involved in ME and my case. it is ever so comforting.

back to the mass...I realized that the place he was pushing, where the mass is, is right under the bottom of the right side of my ribcage. I have been working out very hard over the past year, especially my core. i noticed that my muscle base seemed to be developing a bit more on the right side than the left. I am right handed, right bodied, etc...so i discounted it to that. was that really the mass growing??? could I have caught this earlier? if i asked my GP, would he have noticed, or had a reason to inspect me further? the thing is the size of a fist right now. it's not operable. would it have been earlier? i go to the doctor for everything, but didn't for this one. i just had no reason to know or suspect. just like with the presenting symptoms just a few short weeks ago.

i was just moving f rom the bay area to san diego. from wet and damp to dry and dry. so my urine gets dark at the same time, and i figure i am just not drinking enough water. my stomach starts getting distended, and i write it off to just falling out of shape, and eating poorly and erratically. my body gets this terrible rash all of a sudden, and i discount it to something funny in the corporate apt sheets. i buy my own sheets and blankets - it seems to subside a little bit. i am exhausted..discounted to a new job, some personal life changes, a move, and the usual second thoughts after having made a huge decision to uproot your life, etc. I go in with this seeminly disconnected set of symptoms, expecting to hear about something that a pill or 6 could fix.

Hepatitis is the first diagnosis, which is bad enough. Can't figure out how I could have gotten that, and find myself blaming a Jack in the Box in some ghost town in nevada. one week later, and much blood letting later, i am in with a gi specialist who determines that i have PCS, primary cholangic sclerosis. sounds awful, huh? he is freaking out. i don't return to him. i find from my gp, whose blood results seem to get lost every few days, that my bilirubin counts are 5.5 (normal is less than 1.0). and my AST is low to normal, which is not consistent with hepatitis. i go home and get a call from the specialist i initially wanted to see, and 2 days later i am getting a MRCP, CTScan and more blood letting. it is all a blurred haze to me. he brings me into the office a few days later, as he can't tell me over the phone, that he believes that i have cancer, in addition to this PCS thing.

i take it all so clinically, like it is about someone else not me. surreal is the word that still lingers for me. next step is endoscopy, during which my doc is trying to put in a stent to allow the bile to flow out somewhere. see, my bile ducts are completely obstructed by this mass (which has also permeated the liver wall into a primary vein somewhere) and I am very jaundiced. the stent should help. i awake from this procedure and find that it didn't work, and the interventional radiologist is going to go in again, this time through an incision from the opposite direction, and will try the stent again. I am not even coherent yet, and they put me out again for this surgery.

I wake up in the hospital, as an inpatient now, with a horrible pain in my abdomen. i can't move. the doc's trusted assistant comes in to tell me about the bag that is attached to a tube coming out of me. "external plumbing" is what my new doc team calls it. i am relieved, thinking that, just like with a boob job, this is to drain off fluids and it will come out in a few days. in surprise, the guy says to me "no, weeks to months". it's about to become a new way of life for me. not only does it restrict my normally fast paced and active life, but i have this horrible, unsightly bile bag that hangs out under my clothes. surreal, once again. I am in for 2 nights, and go home. the nurses were wonderful. as i am wheeled out, i see on the wall, "oncology" as the label for the floor. that's awful. i have a label now. a scary one.

my very dear friend is there with me the whole time, scooping me up totally, and taking me into her house and home, just to make sure I am not alone, and that I am not afraid. I have to worry about nothing. i can't tell you the comfort that i felt in all of that. but, it still can't be me! how can i be sick in a way that i can't fixx?? I can't control this, it has taken me over nearly overnight.

I can tell only 2 other people in my life, my best friend from high school, and my recently ex-d boyfriend. with them, i can talk without crying. it is still very clinical. surreal. they are scared for me. i can't afford to be. I keep waiting to awaken to hepatitis or something. surely the docs are wrong.

one night in bed, i awake to terrible convulsive shivering of my whole body, and the bed is soaking wet. I can't even get up. after about 20 minutes, i crawl out of bed, strip off my clothes and put on just a robe. i crawl back into a soaked bed. after about 10 more minutes, it subsides and i fall asleep. that morning i go in for a relatively routine check up on my drainage tube,,,one where they light up the billiary tree, to see if anything is working properly. it is, and they have to watch me for 4 hours.

i am by now new best friends with the whole radiology and endoscopy groups. they put me in the bed that they roll into their area, to keep a close eye on me. suddenly i can feel the convulsions starting again. i give the alert, and they are not too alarmed....rather they pile on blankets until i have 6 blankets, getting colder and sweating, and my entire body is convulsing now. i hear them call my wonderful doc there. one nurse recommends demerol to stop the shaking, 25 mg, and then another looks at me and screams give her 50 mg. I manage to shout, give me 50 now. the doc agrees. i literally feel the demerol going through the iv into my arm, into my body, and the convulsions stop. more bloodletting is ordered, stat.

so, i have sepsis, which is an infection in my blood. i end up in the hospital for 2 more nights, after which i beg to go home. i needed to come back to the bay area to see my dogs, to be in my own bed. i smell what i think is the horrible beds there, but it is really the stench of bile. During those 2 nights, the first one is just fine. they take blood every hour, as well as temp and bp. my temp is up around 101.5. they are turbo loading me with antibiotic cocktails to get this under control.

The secong night was tragic. the skating part of the olympics was on. suddenly my iv machine starts beeping loudly. something is wrong. I buzz for the nurses, and through 4 skaters i wait - it's 20 minutes as i know that each performance gets 4 minutes, and there is about a minute for their scores. the woman in the bed next to me calls again. about 15 mins later someone comes in and tries to explain "why" the damned machine is broken, like i care. just fix it. he does. i tell him i have to go to the bathroom....he can't help me because he is not my nurse. i ask him to get her then. he says ok. there are a few complicating factors here. I have ulcerative colitis, and am off my meds for that during this stay. the drug i take for that is actually a chemo drug, so it very strong and hard on my liver. i am back to having a 3-4 minute warning before i have to go, and it is an emergency. furthermore, they have the iv machine on one side of the bed, and the socket for it onn the other side of the bed. i am trapped. i can't reach over to unplug it to let myself go.

i sit on the end of the bed waiting patiently for nearly 20 minutes, and i start to cry. i am scared. did everyone out there leaave? what the hell are they doing? last night they were in there every 30 minutes. tonite, i am on my own. I press the call button again, and scream into the wall, that i have to go now, and i have ulcerative colitis, and my 4 minute warning was 20 minutes ago. i was in pain now. the "mentor nurse" comes rushing in to help me. what the hell was she doing in that station while i was waiting??? she unplugs me from the wall, and says she is going to turn the light on for me. by the time she turns around, I am at the bathroom door. "i would have helped you". " i don't have time for that!" she apologizes profusely. just get the f out of my way. i come out and she whispers that i was "perspiring" so she changed my sheets. i bark at her that i have sepsis, and a 101 temp. I am not perspiring, i am sweating to death with fever. i rearrange my iv machine to be near to the plug, and from now on am free to let myself up whenever i need it. it shouldn't be that way. i am in my early 40's and strong. what do feeble older people do in this situation. i don't want to know.

I leave the next day, only after 4 more bags of turbo antibiotics. oh, and before that, the medical oncologist comes in with a very consoling voice telling me that I have cancer and she wants to start chemo and radiation together next week. she tells me it is months that i have. she disappears. later some other doc comes in, and starts talking to me about radiation. before he can say anything, he warns me that my insurance may not cover the treatments, let alone his consultation with me. I tell him that money is not an issue (man, am i ever lucky to be in this position. what do normal people do? refuse treatment and die?) after i sign my life away just to receive a consultation from him, i ask him who he is, and how he fits into this barrage of docs that keep talking to me. i discover that he is the radiological oncologies. so he does the radiation part. although he tells me that he doesn't think there is much hope for me, but he'll do it anyway. he goes away after about 10 minutes. once again, surreal. finally at 9 pm i leave, and get on a plane the next day at noon to come home.

i am comforted at home by my partner. he says he is here with me, and will ride this out with me all the way. i can't tell you how much that means. i am not alone. he has taken over where my san diego friend left off. i am scooped up and coddled, but not treated like an invalid. he tells me how strong i am. i have been so far. finally i get into some bursts of crying. how can this be happening. it is real, isn't it? I'll go into all my questions later.

Whew, it felt good to get this out. It's still surreal, but it is real. I had a colonoscopy Friday, and start chemo on tues. FINALLY i get started. At stanford, with a team of wonderful specialists, who are optimistic, but realistic with me. i love them and trust them already.

Truth, Lies and...well, Secrets

2006-03-02T19:14:00.000-08:00

Likely you are someone's best friend...be it your partner, a childhood pal, a co-worker - anyone counts. What are your "rules" of that relationship? Do you share all truths? Do you tell lies? Even white lies? Do you keep confidences, or do you casually let them slip - perhaps in the interest of helping. What really classifies as a confidence, anyway? How do you decide who "gets" to be privy to that confidence? When do you get to decide who gets privy? Ahh, that's where it gets tricky. We all know the high school games of "she's my best friend" - applied of course to several people depending on what works. Plus, it's hard sometimes to really define who the best friend is. As life goes on, most of us get down to either one best friend, or a really close circle - where one of them is closer to you than the others.

I have always prided myself in keeping confidences. Unfortunately, I learned early on that there are snakes in the grass who act as if they "know" something, and talk to you like they are "in on" that confidence - trying to get you to confirm, disconfirm or elaborate on what they pretend to know. I have been bitten by a few of those snakes a few times in my life, and the result is always the same - that creeping feeling of betrayal. It really pisses me off. I have learned that you handle those snakes by being wary of their "concern" - and attribute it rather to rumor mongering, gossiping, or just the need to have information.

I have learned that people who want information from you say "well, jeanne agrees with me.." or some other shitty thing that jeanne is unaware of, and may likely not agree with at all. I have learned that people who want information from you are manipulative. They are playing on your secret desire to be liked, to build a "friendship" as most of us are pretty insecure underneath. So, you'll give it up in the interest of "I care too" or "I just wanted to help".

Are these wrong things? IMO, Yes in excess or matter of practice in the long run. I don't think so in the moment. We all have moments when we really DO care, and we really DO want to help - and that's one great part about being human, about being a caring human. Sometimes it backfires, but that happens. NBFD. The worst part is when it backfires and you either don't care, or worse, don't even notice! Those are the true ass holes that I like to eliminate from my life.

I have developed what I think, as my best friend has admired in me he says, as an uncanny ability to act as if I have no idea what the other person is talking about - about anything. I don't care how innocuous, caring or helpful it may be. I really want to be that person that others can trust. That is truly more important to me than being someone's alleged friend. Besides, why pull someone else into something that is clearly not anyone else's concern. That's NOT helpful. Now, I will just as freely offer up my own personal thoughts - but I fully expect that the listener will feel free to divulge - be it in the interest of helping, or caring or just plain needing to be the keeper of information. Hey, USE those people when you need to. They can be your "word spreader" when you can't be bothered. They can be helpful in that way.

Speaking of secrets, once a boyfriend of mine knew that every night I wrote in my journal, and I considered that to be the one escape from having to tell him everything, only to be scrutinized and punished if it was off the wall - or just a random thought I pursued. He seemed to respect this, until one night I noticed that the journal was in its place just slightly differently than I left it. Ok, yes, being the sometimes sneak that I am, I know the tricks - and notice the mistakes. So, one night I wrote a rather shitty entry about his 5 year old daughter, whom I am sure was the devil incarnate. Lo and behold, he read it. Interesting dilemma. What does he do? Does he divulge that he knows what I wrote, and that he is pissed? If so, he has to admit to snooping. Well, of course, he divulges, and it is turned on me that I was horrible to have written it, and his reading of it was a non-issue. How charming (yes, he was out within 2 days). Should I have forgiven him? If I really wanted him to stay, the answer is yes. I didn't though. In reality, did it really matter? No, I was keeping a secret and truth from him about his daughter. AND I was lying in the process. All bad. People deserve to immediately be forgiven, positive intent assumed - when you love them that is.

I will admit (again) that I can be a snoop. I have no idea why I do that. Is it curiosity? Is it a lack of truth? Trust? Is it a need to find out if I am being lied to (everyone lies, ask House)? It's a horrible quality in me...especially since what that horrible once-boyfriend did to me is exactly the same!!! I mortify myself sometimes. But we all have our Truth, Lies and Secrets ....and they can all be flaws. Be it the one who divulges conversations, snakes, snoops...we are all human. We want to know, we want to care, we want to be helpful. Wouldn't it be nice if we could all just know and care about things that really are helpful? Even if that means keeping secrets well. I want to be better about all of this.

Real Reality shows

2006-03-02T14:45:00.000-08:00

We are a nation addicted to seeing everyone else's problems - and seeing how they deal with them, or not. On one of my favorite shows - also laden with other peoples' problems, Grey's Anatomy, there was a great line about Meredith's (latest) life crisis. Everyone knew, of course, what she was dealing with. the line was...She's like a train wreck, and everyone has to stop and look.

So we all have train wrecks in our lives, and usually we live through them, fortunately. You know we are each our own reality show, if we just pay attention. Think of all those etherial questions that we ponder....on our own, or prompted by "the book of questions" (one of my personal favorites that can cause you to either create or deal with your own personal realities. You know, like, "what would you do if you won the lottery - would you go in to work, would you travel to all those places you ever wanted to visit, would you donate lots to a charity, would you invest it, give it to your friends and family...?" Or "what would you do if you never had to work again - for whatever reason?" - ....would you work for a charity, would you travel, would you read all those books you have piled up, would you shop til you drop for anything and everything you wanted, would you spend time with your family, would you take that cooking or dance class? Or the one we all never think we will have to answer - "what would you do if you found out that you had 2 months to live? 6 months? a year?" the same kinds of options come up, usually.

For most of the last 2 years, I had the wonderful opportunity to NOT work, and to get paid my full salary. WOW, how often does that happen any more? I had a finite period of time, I knew, yet I couldn't really figure out what to DO with myself. I was not limited much by money, and time was not an issue. All I had to do was to figure out what to do with myself - to do all those things I always wanted to do when I was constrained by day to day drudgery. I thought, Oh, I'll read x books, I'll volunteer at the dog shelter...maybe even get on the board of one! I'll travel with my partner as the "corporate wife" to cool places. I'll be a "lady who lunches". I will take those salsa dance classes I always wanted to take. I'll do lots of home projects. I'll learn to play the guitar, or the piano. I'll start up my mural business again.

I found out several things in this process....Most other people DO have to work, so doing things WITH other people is rare. I DID get to be the corporate wife for a while, and liked that. Traveling to fun places without having to present something work-wise when I got there. OK, so there are still many other "solo" things that one can do - like even on those corporate wife trips most of my days were solo - and I didn't really mind that, as I LIKE the British Museum, even though I had been before....he didn't really like the touristy stuff. I like going to afternoon theatre. I like shopping for the odd and unique thing that he needed for the next day - suddenly buying the "perfect belt", or finding the most comfortable undershirts (only to find that they have no idea what that means in London) - all become "events" of the day. I like home projects.

I volunteered at one of the finest animal rescue organizations in the country...staying a week each time. I became a regular....and absolutely loved it. It is set, however, in some of the most beautiful mountains and canyons you will find, and I hardly explored nature. I would retreat mostly to the cottage....venturing out only to walk my dogs. I worked out faithfully with a trainer - good discipline, plus it served my mind and body well. I didn't really work that HARD at it, though.

Lazy. That's it. I just couldn't be bothered to put in place a "work plan" to structure my own life, like I had to do when I was working - when I had more tangible goals. I simply just meandered around, frittered away my days, and worried about that end of time, when I knew I had to go back to work. Why get started doing something new when I knew I only could commit for a while? Dumb, dumb, dumb.

You know, I failed on many fronts, like now I went back to work and that stack of books still goes unread, and I say things like "I wish I had time for reading". I blew my relationship with my love of my life because I had all the time in the world, and couldn't bother to pay enough attention to him where it mattered. I have no more time, or interest really, in finding the perfect belt. It is so much easier to do it all on line. My home projects were MANY, but many were left unstarted, or half done. I should work out more. Traveling, well, I have been so lucky in my life to go to so many exotic places for work, that I have done much of what the average duck only longs to do - so I have to get creative about what I want to do in the travel arena. Makes planning vacations hard. Even work is hard for me to make plans about....I can't seem to commit to anything. At all.

So, I had the "what if..." question in my own personal reality - and I just didn't do it "right".

I now have another one of those "what if..." real reality questions. What would you do if you had 2 months to live? 6 months? a year? And you know, I am spinning again, worrying about "the end". Just like I did with the last few years. Except, this time I really don't know when things will end. Or how I will feel along this road I am on. You just don't know what you will "really" do - or feel - until you are there facing real reality. I am yet trying to wake up from some horrible dream. Once again, I am procrastinating. What DO I really want to do in this shock of reality that has a real ending....not a second chance. This time, other people are available for those "ladies who lunch" types of events...just in case. Maybe they really would have been there before if I had just tried harder? I am scared of the end of my reality. I hope I don't waste this. Others are also being affected by my reality....I am no longer "solo" in anything, not even if I wanted to be - which I don't. I want, instead, to tell people how much they have meant to me. But WHEN do you do that?? How do you let people know how much you love them? Do you go out and tell assholes that they are? Are you nicer to people because really the tiny things just don't matter any more. When do you realize that you have to let go, stop helping people fix themselves, stop trying to fix them, stop trying to fix your own history and feelings. How do you know how much to ask for without imposing? Do you want to suffer? How long are you willing to do that before you realize that this is really "it?" Those are the questions that should be in the "book of questions."

This is the only reality you get, and you only get it one day at a time. Don't waste it watching someone else's reality. Yours is really interesting enough, if you just pay attention.

no matter what...

2006-02-04T23:42:00.000-08:00

You just don't find many people in your life who love you no matter what. I am one of those people - to a fault. I mean, I get hooked into someone that I care deeply about and am like a dog with a bone. I get kicked. Sometimes I kick back. But that is never really gratifying to me. I am just a girl from nowhere-ville Indiana. All those good midwestern values, smart, kind, always trying to be the "good girl" -- and naive. A man told me the other day while he was giving me some job search advice..."just play it coy. women are really good at that. (chuckle)" Well, I am not, and wish I was in many self-protective ways. One of my big flaws (notice I said ONE of them), is that I wear my heart on my sleeve, and you always know what I am thinking when I am thinking (or feeling) it. That's dangerous, and sometimes destructive. But, if you get under my skin, I will love you forever, no matter what. I don't ever want to change that.

it's just what i needed...

2006-01-31T22:11:00.000-08:00

i seem to get on a roll with these things....like a flurry of emotions and thoughts that come out in bursts. this time, i am thinking about my friends, and how important they are.

as i have been going through a lot of tough times and changes over the past several weeks (see my last posting), my friends have come out of the woodwork in droves. like an army. a powerful army. some of them are angry at what i have to deal with. some are sad. some of them can cut through it all with such simple clarity. some are compassionate. some are purely fact based - pragmatists. i love them all, and need them all. when i feel sad, i need compassion. when i am confused or overwhelmed, i need that clarity. when i feel lost, i need that pragmatist. when i need consoling, i appreciate their sadness for my predicament.

all of them are truly supportive, no matter what their approach to my predicaments. they all listen, patiently. no one riles me up more than i need...it's like they just know to listen. know when to talk and what to say. and do they ever say the most wonderful things. they don't have to. they don't even have to return my calls. they do, and they listen and provide counsel (when it makes sense) for hours on end sometimes. they listen for 5 minutes sometimes. whatever i need.

there was this email that came to me a few weeks ago about "sisters". my own sister is a bit aloof and has her own life to live, although from time to time she has really been there for me. and that i appreciate. by "sisters" the email referred to any and all women that we have in our lives - the ones we will know for all our lives. the ones we count on to help us through all of life's challenges. i have gone through many years in my life without contact with people i love. (yes, there are some men out there who count as my "sisters" in this case). i am not so great at long distance things, unless the other person does some heavy lifting. i wish i was better at that, but i am not. i keep trying, and i have a lot of good role models to help.

back to my army. they all represent the "sister" i hope to be. their words of encouragement, counsel, and the love that it all represents are precious to me. maybe it is just that time in all our lives when we know that other people are why we are here. it's back to life is long...

i am so glad that i have reconnected with some of the friends i have made through the years, and sought out the new ones. people are so wonderful. and we need all of them in our lives as they provide such a wealth of perspective, balance and compassion. i want to be a better friend, a better "sister". never underestimate your impact on others...as the simplest gestures can turn a person's world around.

Broken squeakers rock

2005-11-13T16:29:00.000-08:00

For those of you out there with pets, you'll totally get what I am about to say. For those of you without (because you don't like them, I mean), I'm sorry, but you are not likely to enjoy this and you are not my target. In fact, I don't even have any friends that don't love some kind of animal.

For the past nearly 3 weeks, we have been at the bedside of our dalmation. About six years ago, this sweet girl was found dumped along Highway 15, east of San Diego. That used to be a common place to find dumped dalmations, for some reason. Some kind soul took her to County shelter (a.k.a, the dog pound).

She got a stay of execution at the last hour (well, 48 hours before), through her rescue by the Rancho Coastal Humane Society in Encinitas, CA. They had a wonderful program , called "Second Chance", whereby they scour the pounds for animals that seem most adoptable. Well, that sounds very discriminatory, and it is. Unfortunately, the sheer economics of shelter life require tough decisions to be made. And if there is a spot (no pun intended) for another animal to come in, they try to save animals who are most likely to find a home quickly - and to stay placed in those homes. I do not envy the decisions that those kind souls have to make every day. They take care of as many animals as they can, and am I ever glad for that.

I digress. Dog rescue is a particular passion of mine, and that is a topic for another day.

After a 2 month stay in a loving foster home (yet another great element of the Second Chance program), her foster parents were able to report on her habits, behaviors, demeanor, etc. Then, this 1 or 2 year old dalmation (who can really tell the age?) came into Rancho Coastal looking for a permanent home.

I had a (roughly) 5 year old, 90 lb., protective Chessie/Lab mix rescue who was looking for love. (of course he was neutered! what did you think?) He had fallen in love recently with my friend's dalmation, who she had rescued from Helen Woodward Animal Shelter (yet another fantastic animal organization). She was deaf, around 2 years old at the time, and full of spunk and love. She had a sleepover one weekend, and he (Flanagan) fell madly in love. Honestly, you could see the stars in his eyes, just like in the old cartoons. (ok, did I just date myself?) So this girl could be a fine date for him, but as a live-in? She already had a fine home.

I was volunteering at Rancho Coastal (a wonderful, but dangerous thing for a pet lover to do). As I embarked on this hunt for Flan's soul mate, I met and interacted with many, many dogs. One day, after a 2 week hiatus, I turned the corner and saw this little dal. No, I didn't fall in love immediately. I didn't really know dals, and their rep is a bit less than perfect. You know, "hyper", "stupid", "into everything", "doesn't play nice in the sandbox with people other than their own people, kids or other dogs"...you dal owners out there know the list goes on. Plus, she seemed a bit aloof with me, but came in for a check in occasionally.

That was the clincher! I have always been attracted to men who are aloof and a bit of a tease with me (you are the exception, dearest) - so why would it be different with this dog? A challenge! Her name is Minnie, for the Minnie Mouse ears confuration of three spots on her butt. And she is calm yet spunky (like her dad), a cuddler, a kisser (watch the ears), a talker (don't mistake those purrs for growls!), loves ALL people (especially men), sneaky (a bandit of sorts), stubborn (like her mom) and everything she sees goes in her mouth. She is also well trained, and mostly obedient on command. (That took a while as you have to be smarter than your dog to train them, and most of us aren't!) And she loves the pup she raised, who we now call her "brother."

Long story a bit longer, she met Flan, he fell in love and stars twinkled again, she got past her "hard to get-ness" with him, and they lived happily ever after. They adopted a 10 week old rescue pup (it runs in the family), a little choc lab mixed with something that gave him some occasional white markings. Perfect! Yet, our family of 3 was all too suddenly brought down to 2 when we lost Flan - only about 5 months into his pairing up with Minnie.

Now she had to raise this 5 month old baby on her own (his nickname is Brown, among several other names). They have lived together, paw in paw, curled up in balls together, at separate ends of the couch, through spats, through hours and hours of training (and re-training). Through a divorce, 2 cross-country moves, 4 houses and a wonderful new daddie. We dote on them, buy them feather beds to make sure they are comfortable, get their collars in colors that complement their coats, take them on vacation. Yes, they are our kids.

She is now 7 or 8. We have had her for nearly 6 years. Two and a half weeks ago she fell suddenly ill. Trembling, sad eyes, lethargic...then the next morning she threw up - and to the vet she went. (We have the most wonderful vet, Bishop Ranch in San Ramon, for those of you in the East Bay of SF). Almost immediately she was diagnosed with liver failure.

She spent 2 solid weeks in intensive care - with the most wonderful staff of caregivers. I was there (usually in tears) about 6 hours each day...at each feeding and at noon. I talked to her, I loved her up, I fed her beef hearts, steak and cheese when she stopped eating. But her bilirubin (that's bile) counts soared up to around 50 (below 1.0 is normal!), her enzymes shot up to about 1000 (WAY out of any range imaginable), and her albumin counts sank to about 1.o (normal is about 2.3 - 4, so a dip of even .2 is significant).

I kept hoping for, and seeing, a look in her eye that said, "Mom, I'm so tired, but I am really trying to make it." In the middle of this, the doc told me that we needed to prepare to make a very tough decision in the next 48 hours. I said my good-byes, and her daddie came home from a business trip to say his, as well. (She is a daddie's girl, you know). Now, I am not a religious person. But I sent out prayer requests to tens of thousands of people online that night. I was very specific in what I wanted with those blood counts. Next day, she had made a radical turn up. I brought her brother and nannie in to see her. I talked to her for hours. And those numbers kept getting better for a few days.

Then she started to crash again. I don't know which is worse, knowing that she is going, or the rollercoaster of hope and despair. We said our goodbyes again, and had the hard conversation of how to handle her death, the body, telling people without choking up. Damned if she didn't perk up again!!! Her blood counts blasted up on the positive side. She came home 2 weeks shy of the day she went in. Our miracle had been granted for her, but something just didn't feel final to me.

We expected lethargy for 24 hours...wouldn't you be tired after 2 weeks in intensive care with tubes all over? She didn't eat her breakfast (bad sign), wouldn't take water (really bad sign), and she vomited last night's food (terrible sign). She was trembling, and restless. She appears to now have pancreatitis - likely triggered in part by all the fatty foods I was feeding her to keep her alive and healing during her liver crisis. She is back in ICU. Trembling, looking at me with those eyes again, not drinking (lucky we have IVs), and turning down all food (except for the turkey bits I just got today). We just hope her little body isn't too worn out to beat this one. She cheated death just a few short days ago. Can she have another miracle?

The last interaction I remember having with her was the morning of when she began to act sick the first time. She got in really big trouble for breaking the effing squeaker on her brother's toy. Mind you, she breaks ALL of them. But I was really mad this time. That's what I remember. I hope she doesn't.

Never go to sleep mad. Always tell people you love them, all the time. They may know it, but they love to hear it. Forget the petty stuff - and most of it is...it really doesn't matter. Let everyone break the squeakers once in awhile. It could all be gone in a flash.

does it ever stop?

2005-11-12T17:40:00.000-08:00

I'm a creature of habit. I'd like to think I was more random and spontaneous. Alas, I am not. I have things I like to do, places I like to frequent, a small collection of people with whom I like to connect regularly. Please don't mistake this to mean that I adhere to any schedule, or that I finish what I start, or that I can focus on one thing at a time if something attracts my attention along the way. I prefer to call that my creative side. Others may have a problem with it, but some (only my oldest, closest friends, mind you) like the challenge of trying to follow me.

I am also a big fan of nesting. Over most of the past year, I have been lucky enough to have taken a sabbatical. Plenty of time to nest, to walk around the house being distracted by many things I just don't even take notice of while working 60 hours a week and scurrying around on weekends to do "life things". I have had as many hours as I wanted to do those things. And to discover that there are so many fun and interesting life things out there that I don't know how I will have time to work once I do go back.

In the midst of all of this exploration and discovery, I have been called, on more than one occasion, self-centered. Centered on all of those life things that I consider to be mine, and about me. While I don't feel good about those accusations, I understand how a person can get there (yes, I am also great at rationalizing.) During the blur of things that muddy our view of what life really is during those 60+ hour weeks of work, it's so easy to get lost in it all. To lose a sense of self. So, while I don't know yet if I have achieved the proverbial "finding myself" in all of this, I have sure had a blast searching.

A few months into my job search that I started for real a few months ago, I realized a little late in that game that I AM, in fact, pretty self-centered. It is all about me and my job search, and my interviews, and my let downs, and my hopefulness....Well, the list is endless. I stopped paying attention to others around me - others whom I love dearly. I can't wait to tell about my latest flurry of exec search firm calls that came in, or to bemoan the lack of activity. I get all spun up on a job search high, only to crash when a disappointing call would come in...or when no call would come in. I have now become that totally dull, work focused person that I know I once was - without even a job to blame it on. I find myself getting bored with me, even annoyed with me!

One commitment I made to myself when I embarked on this sabbatical was that I was going to rest up, clear my head, do all those things I never have time to do while working, find new interests, and come back to work all refreshed and jazzed. Looking back, I realize that there are so many things that I did do that met those criteria. Spent two weeks at Best Friends (the coolest animal sanctuary ever, caring for over 1500 homeless animals - it's in Kanab, Utah...check it out). Traveled to London a few times - with my boyfriend on business - (sort of the corporate wife for a change). Visited my family a few times. Took a motorcyle riding class (ok, i had a blast, but never managed to finish that one by getting my license!). Lots of house projects. Gardening. And spent lots of time playing with my dogs. Lots. Regretfully, I didn't read that shelf full of books that keeps growing. Didn't take gourmet cooking classes. Didn't sell my great grandmother's antiques. Didn't walk the dogs much. Didn't take up running (and stick with it). Didn't spend enough time taking care of the one person I love most in my life - in the ways that he needed me to.

After all of this opportunity to soul search, to rejeuvenate, to relax - I find that it may be that I just don't know how to do that. Maybe I don't even WANT to. Maybe it's back to what I said in the first paragraph: I AM a creature of habit, even if the habits are all around work. And I AM one who likes to hop around a do many things. I don't care to finish things. I was afraid to quit work - to quit that habit, that addiction. Now I am afraid to go back, to quit all this spontenaeity, this focus-hopping. Will I go back to work and dive in fully again (yes, I have to...if I was independently wealthy, I am not sure if I would have all of this anxiety), only to find myself trying to regain the dizzying array of wonderfullly distracting "things?"

Will I ever just be able to enjoy what I have when I have it. Sheryl Crow's line is a mantra for me....or at least an aspiration for me: It's not having what you want, it's wanting what you have. I'll keep trying. I hope I figure it out...soon.