The Watcher

"I'm back." It was only a couple of weeks ago that I had that epiphany. I might even be better than I once was in some respects. I seem to laugh more easily. I joke with people and poke fun at myself. It seems I'm more chatty, more friendly and less anal. Yet another medical marvel brought to me courtesy of the new medication I'm taking.

Underneath the new, better me is the Watcher. She hovers just under my consciousness, ever mindful of the fact that a mastectomy, six months of chemo and seven weeks of daily radiation do not in any way guarantee that all the errant cells have been killed. The Watcher is the mad woman in the attic. She's extremely irritable and the closer I get to my three-month blood test, the more easily frustrated the Watcher becomes. I can hear the annoyance in my voice as I talk to someone while I'm struggling to get the batteries out of my wireless tracball. Everything demands more from her than she has to spare.

The Watcher notes every unusual physical experience. What is that itchy spot on my upper left shoulder blade that I keep forgetting to show someone so I can get some reassurance? As if anyone could reassure me. Is that a new mole on my face? I have a new cough. That's particularly troubling to the Watcher. She knows where breast cancer will metastasize and, even though the rational mind remembers we're in the middle of allergy season, the Watcher knows she needs to keep track of how many times I cough every day. My radiation oncologist told me months ago that part of the carcinoma was very close to the chest wall. The Watcher remembers as if it were yesterday.

Friends, co-workers and family know nothing about The Watcher. As far as they're concerned, I'm fine. The minute radiation treatment ended, I was officially fine. My mom thinks I should have a positive outlook. I do. I just wish someone would figure out that worry doesn't end when radiation does. The fact that it doesn't makes me feel like a hypochondriac. I feel silly and embarrassed.

The Watcher knows it's not silly. Just under the level or ordinary consciousness, she reminds me about that one cell.

Tales of the Ditzy Oncology Nurse

It's 4:29 here now, so this will be a short, venting kind of post. I got a call from my oncology nurse this morning, telling me we need to reschedule my appointment with my oncologist. We agreed on 11:00 (same day as scheduled); she advised me that I'd need to do lab stuff an hour earlier than previously scheduled (that was originally scheduled for 11:00).

That sounded odd to me because the whole point of going there is to review blood work with my oncologist and I assure you the lab would never have results to my doctor within an hour. I decided to check my personal page at their website and, lo and behold, Pat (the oncology nurse) got it wrong again.

My lab work appointment is scheduled for 8:45 a.m. and I'm going to see the nurse-practitioner at 11:30. I wonder if I should feel comforted that they're not making me see the doctor. That's probably too much to hope for.

Pat. I'm sure she's extremely competent somehow. Unfortunately, my experiences with her have been less than satisfactory. She's ditzy. When I was having sores in my mouth and on my hands because of the chemo, I called Pat and explained my symptoms (as they told me I should). She asked me in a vague tone of voice whether I was doing prescribed oral hygiene. Oh God yes. Believe me, you will do anything to try to get rid of those.

As things got worse over the weekend, I called my oncologist. He immediately called me back and prescribed antibiotics to prevent the sores from getting infected. Had I depended on Pat, I would have had twice the problem--and infection and the sores. My immune system was almost completely shut down by the chemo, so an infection would have been difficult to overcome.

I really try hard to respect and value Pat The Oncology Nurse. If only she'd give me more reason.

Remembrance Of Loss

I started writing a post about lost abilities, but the universe (or the cyber-universe, at least) took it away. As I was writing, it disappeared. I take it as a sign that, though I may examine it briefly, I should not pursue this topic at length. All things have a reason.

Maybe breast cancer has taken far more from me than I ever imagined it could. Today, I realize that's the very definition of spirituality for me. We lose everything, eventually. No matter what. No matter how many vitamins we take, how many trips to the gym, the body will deteriorate and, eventually, die. Intellect will fade and personality will alter. That's how it goes.

I just have to remember that, accept it and, ultimately, I must embrace it. That which I believe myself to be is just an illusion. The whole is more than the sum of its parts. The one I truly am will not be touched by deterioration of any kind.

Chemo clarified the things I am not: not hair, not intellect, not memory, not physical health, not my emotions. These are merely things that I've stepped into, only to leave them behind when the time comes. It's a liberating and mournful clarity.

Today I remember and I see the task stretching out into the distance. Celebrate. I'm here to learn this lesson. Remain open to suffering and dissolution. Greet them as friends. Just like all friends, they can be problematical at times and hard to love.

Along the way, smaller realizations lead me to the greatest one. At every moment, I can choose to search for the lesson that invites me. Seeing the truth is strenuous work and sometimes I'm not up to the challenge. That's why I'm reminded, from time to time, in many ways, that life slips away.

There's a great Zen precept "Do what is in front of you."

That which is in front of me today is a remembrance of loss.

Learning To Live With Someone New

I type things and then erase them. Over and over. The bad day began last night. I got weepy earlier in the day and now it appears there's no point in trying to remain upbeat. I had some fun this morning, writing about Crazy Land. Then a friend asked my opinion about Phil Spector. That's currently one of my favorite topics.

I told my mom it would be okay to bring over my book, Living With Breast Cancer. She took it away during the time I was undergoing treatment because every time I started to read parts of the book, I would become terrified of what was going to happen next.

All clear, I thought. Treatment is over, so I thought I might get some useful info about what my radiation oncology nurse called "reclaiming my life." Instead, what I found was confirmation that some of the bothersome things I've been experiencing may be treatment-related. And permanent.

I read that chemotherapy used for breast cancer (and maybe other types) can change the structure of the brain and how it functions. Or doesn't. Antidepressants can exacerbate the bad effects. As can steroids used in treatment and Tamoxifen used post-treatment.

They may affect memory, spatial-visual abilities, verbal (especially written) skills. There may be permanent alterations in concentration and attention span. I've experienced a lot of these. I chalked it up to depression, hormones, and/or age. Any (or all) of those things may actually be part (or all) of the problems. Or not.

It's yet more potential for the possibility that breast cancer has taken away all of the qualities by which I've defined myself. The ability to write well and think sharply would be great losses. They have always been self-defining. I'm not sure I can recognize whether verbal skills have deteriorated. Certainly cognitive functioning has changed and not for the better. I'm kind of stupid now and I have absolutely no memory at all. Maybe permanently.

One of my co-workers has a daughter who's participating in an American Cancer Society event which will culminate in an all-night walk by cancer survivors. Luminarias will light the way. It brings tears to my eyes as I type these words.

I've developed an abrasion underneath the new girl where some scar tissue has formed. There is a patch of irritated skin on the scar that runs across my lower stomach. It's hard for me to tell what's going on, from day to day, with my incision sites. Sometimes things hurt for no apparent reason. Even in places where I'm numb to the touch. I note it and move on. What else can I do?

I've had pain for a couple of days now in those places, so I asked Hubby to look in case something was actually wrong. Obviously, something was. So. Back to the vesty bra and underwear that comes up to my waist.

I'm not sure why this seems overwhelming to me today. I gave it my best shot to buck up and was doing fine, it seemed, for a while. I have extensive experience with bucking up. Not today, I guess.

Living With Cancer

I just wrote a lengthy post about Ted Koppel's documentary, "Living With Cancer," that was on the Discovery channel last night. (The post went flying out to Internet Purgatory.) The documentary will be aired again tonight at 8:00 Eastern time. If you have a friend or family member who has cancer, this program can be very helpful.

Leroy Sievers is Ted Koppel's best friend. He is dying of colon cancer that metastasized to several parts of his body. He is in Stage 4. That diagnosis almost inevitably ends in death. Elizabeth Edwards (who participated in the town hall meeting shown after the documentary) has Stage 4 breast cancer. No matter where the cancer travels, it will always be colon cancer or breast cancer. Just in a different location.

I can't imagine suffering through the treatments only to postpone death. We're all going to die, but some of us have medical proof that we're going to die sooner rather than later. There will be an end to Christmas lights, an end to friendships, to all of those daily things we tend to take for granted.

Since about halfway through chemotherapy, I've been almost certain that I would not choose to go through it again. Even if it meant dying. Of course, when I was first diagnosed, I thought I would refuse chemo and radiation. In retrospect that was profoundly naive. So maybe I would do another round of chemo, another round of radiation. I guess that's just one of those things you don't know until you get there.

All of the people at the town hall meeting were either currently being treated or had been treated for cancer. Without exception, everyone could see some positive things about having cancer. It certainly changes your perspective and clarifies priorities. It measures the level of inner strength you possess. I have attained heretofore unknown amounts of suffering. I care less now about how my hair is looking every day than to celebrate having any hair.

Cancer changes everything. It robbed me of all of the things I thought defined me. I'm trying to get some of them back. Some of them were inaccurate measures of who I am and needed to be left behind. Some of them are things that frustrate me, make me angry and cause me great sadness. Nonetheless, I'm still here. That's a lot. I know that I will live every day until I die and I will learn to love whoever replaces the person I used to be. No matter how hard that may be.

Phase 2 Reconstruction Scheduled

I finally got in touch with my plastic surgeon's nurse, Brenda. The last time I visited him, he told me Brenda would get in touch with me with a new surgery date. He thought it would be about four months down the road, but he cautioned me that he has an (outrageously) busy schedule.

I waited and waited and finally sent an email to Dr. K's scheduler. I just wanted to get the surgery date scheduled so I could attempt to put this out of my mind. It never does me any good to think about this stuff in advance. It's highly anxiety provoking, though not so much as my visits with my oncologist and surgical oncologist. There will be drains. That is one of the big reasons I need to put this out of my mind. Well, that and the pain.

My date is August 29, much sooner than expected. I immediately freaked out. Yes, it's good but no, it's not good at the same time. Let me just say it again: drains. My mother points out to me that I had drains for the mastectomy and they were very bearable. I'm not certain that didn't have more to do with the psychological trauma of having a breast removed than the lower pain level in having plastic inserted into your body. Maybe if I just get my beloved Dr. Ross to do it. Of course, Dr. R. is much better at cutting things off than at recreating them.

I probably won't be writing much more about this until the drop dead date (no Freudian slip here). I will be posting about the upcoming oncologist visit (the end of May) and my trip to see the wonderful Dr. Ross (sometime in June). I'm putting surgery out of my mind now.