Wednesday, December 28, 2005


This morning I went to my radiation simulation appointment. It went relatively well, I got my tattoos (two black dots), and I'm ready to go. However, somebody screwed up the scheduling. Dr. Morris told me, very distinctly, that she wanted me to be ready to start radiation on the 2nd. Well, apparently they don't have that note in the schedule, and Dr. Morris is on vacation, and they said they could get me going on the 16th. WHAT?! I negotiated them to the 10th, but they were very clear with me that this schedule could change at any time and I may not be able to start on the 10th.

Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.

I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.

Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.


Tuesday, December 27, 2005

What's on the outside

(I will put a Christmas update posting another evening, I promise.)

I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.

Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.

It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.

When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.

Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.

I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.

I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.

Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)

I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.

Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.

It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.

In the meantime, I struggle.