8-17-09 Update – Second Chemo and Its Aftermath

“It’s been a quiet week in Lake Wobegone.” That’s how I feel these reports ought to start out. Except that I am hardly living in Lake Wobegone these days, and it’s hardly ever a quiet week.

Last Monday, August 10th, was my second chemo. I had been afraid that the neutropenia of the previous week would prevent me from going ahead with the scheduled second dose, but I got lucky. My bone marrow rallied to the task of producing more neutrophils, and I was able to continue with my chemo as scheduled. Having chosen a battle plan, I don’t want to have to back off of it. I don’t want to give the little cancer devils any opportunity to rally and fight back. I want to keep the assault against them strong and consistent.

The hard part of the day wasn’t the chemo, actually. Having an infusion isn’t that bad. I take a number of anti-nausea drugs first, they give me the chemo (mostly, I don’t feel a thing), and then I go home. Some of the anti-nausea drugs make me very, very sleepy, so by the time I get home it’s all I can do to give myself my Lovenox (blood thinner) shot, feed the animals, and stumble my way into my rocking chair where I can fall asleep in front of the TV until I wake up around midnight and go to bed.

The greatest challenges of getting a chemo infusion—on the day of infusion, anyway—are the simple logistics of getting me there and getting me home again. By the time I’m done with chemo, I have a little buzz on, so I’m not fit to drive. That means that I can’t drive myself to and from chemo…I have to find someone to do it for me. Given that I live out in Timbuktu, this can be a challenge.

This week, for my second infusion, my friend Nancy was my pick-up and sit-with person. Nancy is a breast cancer survivor, herself, just like Elaine, my first sit-with person. Nancy is the woman I called on June 20th to ask about the odd appearance of my breast. Nancy is the one who told me it sounded like inflammatory breast cancer and told me to get to the doctor first thing on Monday. Whatever improved chance I have for recovery due to catching this thing as early as possible, before it had a chance to metastasize, I owe to Nancy.

It was also kind of symbolically significant that Nancy was the person to pick me up and sit with me that day, because that morning, as I was in the shower getting ready to go to the hospital for my second infusion, my hair started falling out in handfuls. I knew it was going to happen at some point…but it was still upsetting. Even now, a week later, it brings a lump to my throat to write about it.

One thing I remember vividly and with great embarrassment from when Nancy was battling her breast cancer was the time I crossed her path at work and didn’t know who she was. She had lost all her hair, was wearing a bandana, and was kind of heavy and bloated due to the chemo she was taking. I just didn’t recognize her, and when I realized a few moments later who it was, I had been mortified at myself. That incident kept coming to mind as I contemplated being on chemo, myself: that with the loss of my hair, other people are going to have a hard time knowing who I am. I am going to cease to be recognizable as me. So it was rather ironic that last Monday, a few minutes before Nancy arrived to pick me up, I began losing my hair.

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When you go for infusion, you check in at three different places before you actually get down to the business at hand. While I was waiting in line at the second check-in desk, the head of the oncology nursing unit stopped to chat with me.

“You look better than the last time I saw you,” she said. The last time she saw me had been the previous Wednesday, when I was in the infusion unit getting IV antibiotics for neutropenia and waiting for a hospital bed to open up for me.

“I’m feeling better, too,” I said. And we chatted for a moment.

Then, as she turned and walked away, she stopped, glared back and me, and said in a friendly but very firm way, “Eat!”

I laughed. “You must’ve read my chart.”

She shook her head. “Word travels,” she said.

“Well, I’m eating. I’m eating!” I replied. “I won’t do that again. It wasn’t much fun, and I don’t think I got much out of it—except for a raging headache.” And I appear to have gotten little that was positive, I thought to myself, including especially the chance to save my hair.

A few minutes later I was sitting in an exam room with the door open, waiting for my doctor to come in and do a pre-chemo check-up on me, when this same nurse walked past the open door. She saw me, stopped and just looked pointedly at me.

I threw my hands up in the air, laughed, and said, “I’m eating! I swear! My friend [I pointed at Nancy] is going to go get me a sandwich for lunch in a few minutes!”

Apparently I am notorious now for my little experiment in fasting for chemo. While no one knows whether that played a role in my becoming neutropenic, the prevailing theory is that it did. It’ll probably take me a few infusions to live that one down.

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Getting me home after infusion and staying with me through that first night is a task that has been taken on by my friend Judith. But transportation is always a hurdle for her, because she shares a car with her daughter. So I got the bright idea that she could take my truck for the next several months and use that as her transportation. The chemo is making me so tired that I’m not doing much of anything outside on my property, which means I seldom drive my truck now. Sitting around unused, of course, is not good for a vehicle. So we have a win-win-win situation, here. Judith gets the use of a vehicle all the time for awhile, my truck (Denise = Da Nissan) gets regular use (which she really enjoys!), and I have the convenience of having a ride home from chemo every two weeks and the comfort of having Judith with me overnight when I finish each infusion—just in case I have some kind of bad reaction. (I wish I could say I got to enjoy Judith’s company, but the truth is, I come home and crash and Judith and I seldom get to actually do much visiting! We’re trying to figure out how to remedy this.)

I thought it was very brave of Judith to be with me on the night of this second infusion, because this time I was eating for chemo. Would the nausea be better, on a full stomach? Worse? Would it progress from being nausea to being worse than that? Judith was here to handle the challenge, whatever it might be.

Fortunately for her and me both, it wasn’t too bad. In fact, I’d have to say the nausea was a little less pronounced this time.

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However, that is not to say that nausea is not an issue. In fact, nausea is a constant part of my life now—even on days far removed from when I have chemo. And food doesn’t taste the same, either. Between these two things, nourishment is becoming a real challenge. I try to make sure that when I eat, I eat healthy things, but sometimes I just have to have whatever it is that sounds like it’s worth eating.

Oddly enough, dill pickles seem to be what is capturing my taste buds lately. I can’t eat too many of them at any one time, but I find that it really helps to garnish my meals or grab a stomach-settling snack of a dill pickle. I figure I won’t worry too much about this unless I get to where I crave some ice cream to go with them!

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My other constant companion is fatigue. Years ago I guess I got some “practice” at being fatigued when I thought I had chronic fatigue syndrome. I learned then that I had an energy checking account with a limited balance, and no energy savings account. I learned that I could only spend whatever was in my energy checking, so I had to be careful.

Today, I’m in the same boat. The chemo is just sapping my energy. I worked a 7-hour day on Friday, and it took me a day and a half to recover from the exertion of sitting at a desk, walking back and forth to a copier, etc., for that limited duration of time. In recognition of my limitations, I use the electric carts when I go grocery shopping, now. I can sit and zip up and down grocery store aisles with minimal effort using an electric cart, but it would take a chunk of my energy to walk those same aisles and push a regular grocery cart. So I don’t. If that makes me look disabled, so be it. For the time being, I am.

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I decided this week to enter regular counseling with a therapist who does a lot of work with cancer patients. I’ve seen her once before and really liked her calm, healing energy and her attitude, so I called and made arrangements to go on a regular basis. I’m processing issues having to do with cancer, issues with cancer treatment (lots of those), and general existential issues that I was grappling with long before I got cancer. I could probably have handled the existential issues, eventually, on my own. But the cancer has added a challenging dimension to all of that, and I need the perspective and guidance someone else can offer.

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There were two other big events during this past week. One I cannot share with you all yet. The other is: I went to the wig shop in Cary that caters to women with cancer. It was a most amazing experience, and I have my friend Alice to thank for this.

Less than a week before my first chemo, I read a wig catalog and learned for the first time that I could lose my hair within as little as a week after my first infusion. Realizing that this could come upon me so quickly and that I was totally unprepared—having no scarves, no hats, nothing—I had gone to Alice’s office in tears over the prospect of losing my hair. Alice had reassured me that there was plenty of time for me to get prepared to deal with it and that she would help me by taking me to the wig store and getting a wig for me.

Although I had wanted to go soon after my first chemo, my being put in the hospital prevented that. But when I washed my hair last Monday and came away with big chunks of hair lying on the floor of the shower, something had to be done. When I got back into the office after my second infusion, I stuck my head in Alice’s door and said simply, “It’s time.” She knew exactly what I meant.

Thus it was that after going to see my new shrink for the inside of my head on Thursday, Alice and I went to the wig store in Cary to do something about the outside of it.

The woman who runs the place, Darlene, is a wonder. She has had cancer, herself, so she knows first-hand what the physical and emotional burdens are—not least of which is the change in self-image that comes with losing your hair. Within just a few minutes, we three had chosen a wig style that is close to how I wear my hair, and then Darlene was able to match my color pretty closely. The wig is on order. I can’t wait!

From there, we moved on to the question of what to do about my remaining hair. By Thursday, I was looking very thin and patchy. Pretty much like a mangy dog. Darlene said she could shave my head for me so that the rest of my hair loss would be only of the tiny bits of stubble that would remain, rather than clumps of the longer hair. I’d already asked a neighbor to come over that evening and use my dog clippers to do this for me, but I decided that having a professional do it would be better. So off it went. I was pretty choked up, but I didn’t break into sobs or anything, so I guess I did OK.

It’s hard, though. God gave me several gifts, in life, but being particularly physically attractive is not one of the gifts he gave. Losing my hair only moves me further toward the “not very attractive” end of the spectrum. My identity—my sense of who I am, visually—and my sense of gender identity—my sense of being feminine, despite the fact that I have never been one to really hyper-emphasize my femininity—are both being savaged by the loss of my hair.

There are women who look feminine, who look good, no matter how long or short—or non-existent—their hair is. I am not one of them. I look rough. There’s just no way around it. I’ve seen pictures of longshoremen who look prettier than I do, now. And that hurts. But it’s just the way things are.

I’m trying to learn to have fun with it. I’ve got several scarves (which I am still trying to learn how to tie in interesting ways) and several hats. I figure that I would never, normally, wear scarves or hats as head decorations, so now’s a time to have some fun and play with it. Be bold! Be flamboyant! I am exploring having a wild, showy persona, via the need to wear scarves and hats and such.

But this doesn’t change the fact that right now I feel as if the quality of my physical presence in this world has been downgraded by several notches because I have no hair. It’s just another sad truth, for me, of what it means to have cancer. To be fighting cancer.

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And so it goes. Between medical appointments and tending to medical needs, then trying to work as much as I can, the weeks are busy. The weekends, however, can really drag. In fact, they can be really hard. There’s a sense of being in limbo—of waiting, in suspended animation, until the next week starts, when something, anything can be done again. When forward movement can be made.

I think this is an issue that I’m going to have to learn how to address in some productive fashion. I have to choose one weekend “activity” that is my “thing” for that weekend. Something that will give shape and structure to hours that seem shapeless and unstructured and endless.

To some extent, I had these feelings before I got sick. They are much more pronounced now. I think they may be tied into those existential issues that I mentioned earlier. Clearly, there is work to be done.