December 31, 2010

Trapped. In a cage. There are days when that is how cancer feels and cancer treatment feels. The world is out there, and is gorgeous, but I can't get at it.

The road to hell is paved with good intentions.

Expectations are getting to me. The feeling of expectations placed upon me, about how I'm expected to be. Be brave. Be on top of everything. Don't be angry. Be supportive. Don't make mistakes. Be clairvoyant about what everyone else around you needs, even when you are exhausted, strung out, have been running errands all day, worrying about money, and have managed to squeeze in a PET scan in the middle of the errands. Alone, because your usual cancer visit buddy is apparently mad at you, and everyone else has conflicts. More important stuff to do. Even when you are terrified that you are going to get results that you don't want.

Well, the truth is I feel sad, angry, overwhelmed, grieving and hassled. Sorry I'm not living up to everyone's expectations, but more to the point, frustrated that I'm not, and wishing everyone would cut me some more slack. I'm exhausted, very down, and fighting depression. And yes, I have some pretty weird ways of trying to cover it up.

If the lymph nodes are larger, we probably will start chemotherapy again in January. Sounds like I have three choices at least. Continue paclitaxel-NAB, which has worked fairly effectively in the past. Try an oral, maintenance chemo, like Gemzar. Up side, not as much hair loss. Down side, probably more neuropathy in my hands and feet, and that is one of the side effects that tends to bug me the most, after only GI symptoms and nausea.

Another possibility would be to repeat Adriamycin in combo with some stronger stuff. I'm sort of tempted by this. A much stronger drug, possibly with the potential to knock the cancer out for longer, since it's been five years since I've had it. Down side, more neuropathy, and the possibility of heart damage. I would need to talk through it with Dr. L. Also, I don't really know if Kevin and Tess would be up for this. It would knock me out much more thoroughly for about four months, a lot more couch time, a lot less energy. Still, spring is looking fairly mellow from the work end, and we just have PODS to empty and sort in the next few weeks.

Bones ache. Not enough exercise over the break, so the steroid symptoms are worse. Right hand and feet are swollen, and I can't seem to get the lymphedema to go down, so my elbow aches all the time. Puffy face and collarbones.

I do try not to whine.

Still, New Year's Eve dance party to enjoy this evening. Dancing may break me out of the cage, at least temporarily.

I don't know. I don't think I can be a badass this week.

Update 1-2-11 - Four hilar (between lung and trachea) lymph nodes larger than one centimeter. This is the trigger to begin more chemo. Giraffe in quicksand.

Previously

The other night I was driving home thinking about recent events that have impacted my life. My mom broke her shoulder ice skating with my girls on Tuesday night. Wednesday morning I talked to her for at least four minutes before I realized she was confused about which of her daughters she was speaking with. Her physician thinks that her scapula fragment may reuinite with the rest of the bone if my mom keeps her arm immobilized. Hopefully that wish will be fulfilled with a minimum of pain.

Dealing with my family recently has tried my patience numerous times. We were at my aunt's place when a younger sister of mine challenged my statement about having a gluten intolerance. She works with the woman I've been seeing and for a split second I thought maybe I had heard something wrong during my last appointment. One of the problems with the celiac blood test is you must be ingesting gluten to get a positive result. An official diagnosis in the absence of a postive celiac panel is made only after a biopsy read a gastroenterologist confirms that you have intestinal damage.

When I discussed getting biopsied with my nurse practitioner she said didn't think it was necessary because I have responded to treatment. Before a biopsy can be performed the patient must have enough gluten in their system to be damaging it. The procedure is invasive, it would be expensive but none of that matters because there is no way I would survive eating gluten for that long. Initially I was skeptical about this whole gluten intolerance diagnosis. I could accept the fact that I had food allergies but I didn't really believe that I had a disease. Now that I know what happens when I accidentally eat something that has been contaminated with gluten I have no idea how I lived with this for so long without realizing that I have digestive issues.

When you live with a chronic condition it doesn't necessarily stop being painful but your body gets used to that level of stress. Now that the pain is mostly gone I spend a lot of time praying that it never comes back. Because my stomach didn't hurt in the sense that I wasn't nauseated I didn't know that my body was not processing things the way it should have been. One time the pain was so bad I went to urgent care, at the time I thought I might have had appendicitis however no one could find anything wrong so I was referred to another physician which led to me meeting the practitioner I see now.

Essentially I am sick and tired of dealing with my family and their lack of acceptance and support. People in my family are strong willed, they are opinionated and they like things to be done their way. I am also like this which makes things even more difficult because in the past I have told people how they should be running their own personal lives. Like the rest of my family members I mean well, deep down I think we all know that everyone loves everyone else but it is difficult enough to be sick, feel horrible and have to deal with regular life without the additional frustration of my family writing me off as a hypochondriac.

It doesn't bother me that my family thinks I'm a food freak, what concerns me most is the health and wellness of my children. They both have appointments to see the woman I go to on January 25, 2011. One part of me is fairly sure that my oldest daughter has a gluten intolerance. My husband thinks that I am searching for things to be wrong with her however in her I see my previous food behaviours. Silly things like she wants bean burritos without the tortilla and serious things like she can eat an impressive amount of spaghetti and be hungry two hours later.

Reading about nutrition has been a hobby of mine for a while. Being denied certain foods has forced me to be more creative in the kitchen, it has opened my eyes to exactly how little real food some people are eating and how complacent the majority of people I know are about things like food colorings, additives and preservatives. If my dream was to model good eating habits for my children I have now succeeded. I don't want people to have to go through some of the things I have been through which is why I can't understand why no one in my family is supporting having my children tested for a gluten intolerance.

I want my extended family to be tested as well since the link is genetic but whenever I mention it to them they tell me that they would get tested if they were having symptoms which they aren't. Now that my eyes have changed I see people differently than I used to. I am sure that I could positively impact most of the people I know, I have a message I want people to hear and I get frustrated by some of the challenges but I am also kind of excited that I have information I didn't before. Understanding systems is something I am very good at. The human body is a complicated organism which is why it is so cool when a new puzzle piece comes to me and a picture starts emerging.

Naturally I don't have all the answers, what I've learned is the beginning of a new awareness that I'm using to change my own life. Improving your health starts with the desire to transform what you've been given into what you may not have dreamed was possible. Being labeled a maverick at work is fine with me and hearing that I am not like a lot of other women is cool because I've given up trying to figure out what men want and started focusing on what I want for myself. 2010 was the year I discovered that I am not going to let a disease run my life, I don't know what 2011 has in store for me however I am looking forward to a new life this New Year.

Every New Year's Eve I find myself at some point saying/mumbling/thinking "Well, it can't be any worse than this past year." And every New Year's Eve, I realize that the last time I said that, I was wrong.

Here's to hopefully being right at least once.

When you're depressed, the New Year isn't a cause for celebration. For me, at least, it's cause for gritting teeth, hunching shoulders a little tighter, and ratcheting up the 'endure' meter a little higher. I find people who aren't and have never been severely depressed just can't understand that.

I remember vaguely when New Year's Eve was a cause for celebration; celebration at having made it a little farther on down the timeline, and a hopeful attempt to meet the oncoming year with optimism. Nowadays? Not so much. See, all New Year is to me at this point is a reminder that another year has gone by - and I'm still no better off. Unfortunately, I was raised as a fairly strict rational thinker, and to me, all that means is 'trend.' I've had people try to tell me that 'past experiences are no guarantee of future results' but you see that phrase was invented to describe processes and things that are stochastic. That's the point of such things. But life, to me, isn't at all stochastic. It's entirely dependent on what has happened before. Humans can't think about things without thinking about history or cause.

So this is one reason I purely hate the holidays. I have typically used up all my teeth-gritted tolerance of happy people and optimism around Christmas time, and by New Year's Eve there really just isn't much left.

This and other reasons are what lead me into the nasty circle of depression and self-hate. I got a telephone call today, from one of my oldest friends. I've known him over 88% of my life, I think. He got married a year and a half ago to a nice lady. He was the last of my close friends who had been unmarried, and he got married. I stepped a little further out into the mist. But that's not important. He was calling to tell me that he and his wife have managed to successfully adopt a newborn baby. I think I was one of the early phone calls, which flattered me. But that's not important. My reaction at the time on the phone was to shout congratulations over the phone and listen to to the two of them offer some garbled details on their current situation and how it had happened and how wonderful it was, before offering both of them my love and my best wishes so that they could get off the phone with me and call/notify other people.

Then I cried.

I'd like to say it was from happiness for them, but that would be a lie. I am happy for them. But the reaction once off the phone was purely a reaction to my feeling myself slip further out of the world, further away from the people who are my friends. I don't know what it says about me that my close friends from the first half of my life are now all married and most are parents, and that I am pretty much the only one left who is not, but I'm sure I won't like whatever it is that it does say.

The tears really aren't self-pity.

They're self-hatred, at the fact that my overriding reaction to the news is self-pity.

That's what depression is. It's fundamentally selfish. This doesn't make you the sufferer selfish. Indeed, my depression is worsened by the fact that I spend lavishly of what energy I have to be congratulatory and not be the miserable bastard at the party. But the depression itself is selfish. I can say that my first reaction to the news, privately, was one of sadness and misery. I consider myself a minimally acceptable human because the first (and only publicly visible) external response I generated was not one of sadness and misery. But I consider myself a fully fucking broken human being because that was my reaction.

I know this doesn't make any sense. If it doesn't, to you, then please consider yourself lucky.

"I am a man who, sauntering along without fully stopping, turns a casual look upon you, and then averts his face
Leaving it to you to prove and define it, expecting the main things from you"
--Walt Whitman

"We either make ourselves miserable or we make ourselves strong. The amount of work is the same."
--Carlos Castaneda

"These quotes remind me of us. The first one is mine, because I'm so passive. The second one is yours, because, well, you're making yourself strong and I idolize you."

This is an excerpt from a hand-written letter I received today, from my friend in Baltimore. She makes me feel good. So good, in fact, that I feel it dangerously teetering into addiction territory. But there are healthy addictions, right? Like exercise? Or multiple orgasms? At any rate how could this possibly end in tears? At the end of each of our interactions she tells me she loves me. Just last week she told me she wants me to be the first person to give her an orgasm (!) (she's 24).

Shit. I probably shouldn't think about that too long or I won't be able to focus and finish this daylog.

I was going to do a year in review type thing, but then I realized one need look no further than my entire tenure thus far here at E2 to get that. Instead I suppose I'll muse idly on this subject of the transition from one year to the next, resolutions, and getting shitfaced.

In the barest, most logic-bound terms, a year is nothing more than a name for the 365 day period it takes the Earth to revolve around the Sun. For us humans it literally is just another day. In the cosmic sense 365 days, when compared to the 4.6 billion years the universe has been in existence, is like a fraction of a fraction of a second on a proportionate human scale. Hardly enough time for any major changes to occur, or rather, be noticeable or permanent.

On a more sociological/psychological level, the ritual of getting drunk on New Year's Eve could be examined on a deeper level. I have spent the past week bitching about how this year sucked and it can't be over fast enough, and how even though I was invited to many parties I decided to stay home this evening because this was hardly a year to celebrate. "Well, Chris, I think you're actually supposed to celebrate the upcoming year," my roommate explained. "You already celebrated this year in 2009."

"And look how well that turned out," I shot back. Honestly, though, I think we're both right. Most of us fall squarely into one of two camps; spending New Year's Eve reflecting back on the year's events, both good and bad, or just giving the finger to the whole thing and looking forward to starting anew the next morning. I think I'll play it safe, mutter an obligatory quip about how this year can't possibly be worse than the last, and return to my brooding reflection.

I've already talked about the "one day at a time" mantra of AA. It exists because every 24 hour period placed on a time line for a goal increases its chance for failure. That's why I think the concept of a new year's resolution is flawed. I think a better resolution is to do one good turn a day. Change one thing about yourself, break a habit, try something new, just for a day. That's the only length of time you're ever obligated to at any given time anyway. If it sticks, great. If not, maybe you need to re-evaluate why you wanted to make it in the first place.

Tonight my friend in Baltimore is ringing in the new year in a halfway house. She finally got serious about how much she was drinking, she said, incidentally around the same time I said the same thing. She's been sober for about two months. And she says she idolizes me.

My roommate just walked in and informed me that my phone is apparently "blowing the fuck up" with texts. That can't be good, but for now I'm not going to deal with it. For now I'm going to sit here and read the inspirational quotes my friend sent me and wait for, but not think about, tomorrow. I'm not yet done with this 24 hours. And I'm certainly not expending any energy to make myself miserable.

I wonder why do I cry? I got this e-mail December 31. Why do I cry?

Hi - On the trail this morning I all of a sudden thought of you - we truly miss you and your friendly face. Will you ever come back and cheer us up while walking? Anyway - I personally wish you well and hope your mom is ok, your business is doing ok and your are healthy and all around OK. Let us hear from you! Happy New Year! Hugs
eva

Right now, I wipe away the tears, and hope for a happier year.