Denial: One of God's Greatest Gifts

With all the hardships others endure, I feel a little bit shallow, really. But humble and honest person that I am, I have a confession to make: I completely lost it today after a conversation with one of the nurses at the Cancer Center.

I called the Center because my next chemo is just around the weekend-corner and I felt cheated out of the “good week” I was supposed to have between rounds. Sometimes it’s hard to tell what I should just put up with and what I should be reporting to them.

So today’s list for discussion read: 1) bleeding nose and gums; 2) ongoing skin breakdown at infusion site; 3) continuous “pins & needles” sensation to hands; and 4) weight gain – listed in reverse order of anxiety level.

I now understand why my oncologist and nurse practitioner are careful to avoid words that may be construed as even remotely empathetic. The reason is this: The nurse I talked with this morning was very empathetic – and I ended up blubbering like a baby. She was very willing to listen to my concerns, but assured me that “all of those things are just part of what we call the ‘CC’ – or ‘chemo crap.’

She said the sensation in my hands is neuropathy; the prelude to losing my fingernails. She confirmed that my chemo drug leaves most patients with tissue-thin nails that eventually peel away.

She said the constant weight gain I’ve been experiencing despite much-improved eating habits is par for the course; it’s not unusual for a woman with my chemo regimen to gain 30 or 40 pounds during treatment. (If you know me at all, you realize that this, to me, is totally unacceptable. With my 5’2” frame, I have a pretty good idea how many sizes 15 pounds represents; I never ever want to know how many sizes 30 or 40 pounds represents!)

I asked her why she thought my oncologist failed to mention these particular side effects. He guaranteed I’d go bald, after all.

She said “He’s a guy. His treatments are aggressive. His job is saving lives – and he doesn’t think fingernail loss and weight gain is any big deal . . . he probably forgot.” She dispelled my anger; her voice told me she understood and felt as badly as I did. I don’t even know her name, but her candid and caring manner was commendable.

So I cried raucously , pouted like a toddler, and finally went silent for most of the day. Then I poured myself into a pair of black pants that used to hang on me and went to the funeral of a 56-year old woman I hardly knew who died of cancer . . . cancer that began 5 years ago as breast cancer and was treated with mastectomy, chemotherapy, the works. The church was filled. She had planned her own service. It was creative and filled with love. And she died with 30 or 40 extra pounds that I’m sure she could have done without while still alive and that cremation took care of quite nicely afterward.

I left the church knowing I still had a lot of stuff to do before giving up. And I left knowing that no one loved her less because she’d gained weight.

Nevertheless, I’ve decided that in order for me to continue the work I’m here to do, I shall call on my old friend, Denial! And so I choose to flatly deny that my fingernails will peel away and that I will gain 30 or 40 pounds. I smile in the face of adversity and prove once more that de-nial is, and always has been, much more than just some river in Egypt.

Complaint Department

Okay – so a week ago I was all happy-happy and not complaining. Today I have lurking anxieties that I’m going to share so you don’t continue thinking I’m super human or anything. (You DID think I was, didn’t you?)

I’d read about the possible loss of fingernails and toenails during chemo, but until the “Look Good, Feel Good” gathering the other night, I didn’t know it was pretty much exclusive to one of my particular chemo drugs, Taxotere. Ever since (psychosomatic?), the tips of my fingers and toes occasionally tingle or feel tender, like my scalp before my hair took leave. My fingers are sensitive when I type, which for me is very bothersome. As advised, I cut my nails short and apply olive oil to the cuticles after each hand-washing. If the nails come off, they may or MAY NOT grow back!! If they grow back, they will be nasty looking and ridged for a long, long time. That’s fine . . . I’ll take nasty and ridged!

Another annoying thing the past week is that a blood vessel on the back of my right hand has become chemically “burned up” from chemo. The burn starts at the point of my IV insertion over two weeks ago and travels the pattern of the vein up my arm 2-3 inches. At first it was a thin reddish line, but over the past week has become an angry, dark red, thick line – that today has finally broken through the skin. I watch it for infection and keep it moisturized.

It now seems each round of chemo is going to come with an unpredictable aftermath. This time, though I am sleeping much better, I have less energy. Sometimes when I walk up the stairs I feel I’ve climbed Mt. Everest. My eyes burn and vision is off (we are warned not to get a new prescription for glasses during chemo), so I find myself lying still and listening to music or podcasts more than writing or reading. This of course bugs me because reading and writing made me feel minimally productive and kept me from worrying too much about the ongoing hardships of others in my family right now.

Poop. None of this is unbearable stuff, of course, just “not nice.”

Today is Day 4 after chemo and usually I start to feel more like myself on Day 5, so am patiently hoping for a better tomorrow.

3 Down, 3 To Go

When I walked out of my four-hour chemo Tuesday, I really thought it was going to be an easier one. Having explained to my oncologist beforehand that my most difficult side effect was sleeplessness, he made a change to my “recipe.” He decreased the dexamethasone (steroid) somewhat and added hydrocortisone in its place. He said the hydro wasn’t expected to interfere with sleep as much as the dex – and warned I might experience a little nausea instead.

It is now Day 2 after treatment, and no nausea yet – but I think this one robbed me of energy a bit worse than the first two. Even though I slept quite well last night (though not much at all the first night), I couldn’t imagine leaving the house today. Perhaps because I tried to do too much yesterday in my state of exhaustion? Hoping for a better day tomorrow.

High on Steroids and Having Fun

I didn’t feel quite as drugged up immediately after this last round, so with nausea meds in tow just in case, my friend Mary and I went back to the Cancer Center Tuesday evening (chemo day) to the “Look Good, Feel Better” program sponsored by the American Cancer Society.

My motivation for going was the promise that I’d come away with $250 in skin care and makeup products donated by various manufacturers and recommended for extra sensitive “chemo” skin. What I didn’t think about was how good it would feel to sit in a room with eight other women in various stages of cancer.

Their ages ranged from 37 to 65. As we introduced ourselves and shared our particular brand of cancer, I was struck by the number of women in their second recurrence (undergoing their second series of chemo treatments). Yet another woman was in her third recurrence, with recent lung surgery and undergoing her third series of chemo. Sigh… Those were scary thoughts, for sure. “Wow these women are tough,” I thought. They seemed quite happy and looked healthy.

Three of us eventually removed our hats to reveal bald heads and none of us felt the least bit self conscious. It was obvious we were in this together – and as we got into trying the products (drawing “pretend” eyebrows, etc.) the chatter and laughter was reassuring, indeed. Those of us without hair modeled various head covers and wigs and no one was shy about admitting what “worked” and what didn’t. We all got our choice of knitted hats, too, homemade and donated by volunteers.

Of course I had my camera along, and as the evening progressed more and more of the women asked to have their pictures taken (sporting their new makeup and hats) and asked that I email them copies. New friends abound!

Upon Losing Control of Your Life

The last few days I’ve been experiencing the good part about sickness. The good part, of course, is how good it is to not feel sick! I slept well and annoying side effects are at a minimum. But best of all, I had good conversations with all those close to me who’ve been having genuinely hard times lately (yes, I feel like the “lucky one” much of the time) – and they all seem to have kick-ass attitudes about their hardships right now! You know who you are.

The burst of relief, renewed energy, and clarity of mind produced some “deep thoughts.” (Some of which are, of course, the Jack Handey variety, but I’ll spare you those.)

Early this year, around the time of New Year’s resolutions, I provided my handwritten journal a very honest assessment of my life at the time. I was feeling like a hamster in a cage. (The “hamster in a cage” simile, in all of its triteness, is perfect because I was, after all, feeling tired, worn, and stale.)

There was Mary: running, trying to keep up, and making half-assed attempts at fixing this or that for someone else – but feeling only worn down. I yearned for a simpler, slower life. Sheer boredom was my goal. My journal shows a list of ways to get organized and into some sort of routine, making way for the boredom to set in. If I could only get rigidly organized, I thought, I would finally find time to do what I really love to do: Read, contemplate life, and write.

Five months later a quick assessment of my progress was laughable. None of the organization or routine had yet begun. I had failed and found myself merely five months’ more worn down. (Those of you aware of my lifestyle have good reason to wonder how it is I could have felt worn down. I have the ideal job with ultimate flexibility, a husband who makes me laugh and likes cleaning house, a grand lot of varied and creative friends, and no desire for any more of the things that money can buy. I know, I know, but trust me: I was emotionally burdened by the hardships of family and friends whom I thought would disintegrate without me. How’s that for ego?)

Fast forward another four months and it now seems all those wishes I had for my life in January have been realized. Funny how we get precisely what we need when we need it. (How many times had I heard that one?) And who can fear a future that apparently holds only the fulfillment of your deepest desires?

Simply put, the list I had come up with for reaching my goal of more time to read, contemplate life, and write was not working. It required too much effort on my part. Life, however, had something else entirely in mind. And life’s plan required little of me, only that I go with the flow. This summer I’ve been involuntarily swept up in some kind of weird growth spurt. Priorities have shifted without my input, permission or effort – and I am here with more time to read, to contemplate life, and to write.

Stay tuned for more on shifting priorities as the unpredictability of Chemo Round III unfolds tomorrow.

Chemo: 33 1/3 done.

After the nasty time in the chair during the last chemo – and then the days of being both hung over and “acutely aware” from the double dose of steroids – the aftermath of the second round was more tolerable than the first. My roughest days are those followed by sleepless nights, but I’m adjusting to that too.

This being my good week (between treatments), I’ve been a little more sociable, going out for a few hours each day, sporting my new cap from the American Cancer Society catalog (on clearance!). So other than being now completely bald and having tolerable mouth and cold sores, I’m pretty much me.

I’ve noticed two advantages to chemo. I haven’t had to pluck my eyebrows since the first go-round – and the skin on my face exfoliates every morning after my shower. Just rubbing my fingers across my warm, damp skin has dead cells rolling off like teeny tiny rolls of dough. No wonder my face is so sensitive to the sun, it’s always brand new! For a really thorough exfoliation, ladies, I highly recommend several months of chemo.

Now that my hair is gone I quite honestly am appreciating the time (and “product”!) saved. And, NO BAD HAIR DAYS. What’s more, Greg and I think the shape of my head is somewhat attractive. If it weren’t for my aging neck, I could model for the American Cancer Society wig catalog. And God bless ‘em, but eyelashes and eyebrows are still hanging on and look more prominent and beautiful than ever!

(There is, however, one disadvantage to baldness that is easily managed with a warm stocking cap, both day and night. You would not believe how cold it is up there. Even the motion of walking across a room stirs up enough wind to send a chill down my spine.)

And so it goes.

My sister-in-law, Anne, is coming up for the weekend – and I look forward to her good company. Then on Monday, Mary Rogoski is arriving to sit through next Tuesday’s chemo with me. There’s no denying I enjoy the attention. I think Greg shaved his beard and eyebrows because he’s envious of all the attention coming my way, to tell you the truth.

New Man in Town

If you run into this man on the street, you might want to do a double-take.

Yes, this is Gregory's new look as he tries to empathize with his hairless wife. I had to be honest, I wouldn't have done it for him!

Day 3, Round 2

It is Friday, day three after the 2nd chemo. I'm sleeping slightly more than after the last round, but still not enough. I'm optimistic that I won't get as sick as I did last time, although the double doses of steroids have kept me feeling pretty druggy and hung-over since Tuesday. I went for a short walk through the park and around the block last evening and felt as though I had never been there before. I always was a cheap drunk, so why did I think I’d tolerate chemo any better?

I went to a library sale yesterday. It had been so long and it felt so good, but I had a pounding headache by the time I got back home. I guess I must have felt better yesterday than I do this morning, because I would not venture out today.

Since my hair is so short and weightless, it is coming out at a much slower rate than anticipated, though my scalp tingles and today in the shower the water pressure was enough to put tufts of hair on my shoulders. As if three shedding cats in the house wasn’t bad enough.

June to September

One of my readers expressed curiosity about whether I had any inkling I had breast cancer prior to diagnosis. Were there any symptoms?

No. I felt fine.

We were returning from Greg’s mom’s memorial service in Washington State in mid-June. We camped mostly, but stopped one night for a hot shower and a real hotel bed. After showering, I noticed a very slight irregularity in the curvature of my left breast; a small indentation that wasn’t there before.

I instantly recalled an illustration I’d seen in a medical dictionary of a visible sign of breast cancer. With that in mind, I did a self breast exam.

I had never been good about self breast exams. There wasn’t any history of breast cancer in my family, and besides, I thought an annual mammogram was enough. But I knew how to do a breast exam and what to feel for. There had been a silicone breast, complete with small tumor, in the exam room at one of my mamm0grams. I remembered that finding the tumor in the silicone breast had taken a bit of doing, but eventually my fingertips detected a very hard and distinct pea-sized lump.

And now I found an equally hard and distinct pea-sized lump in my own breast. In Lewiston, Idaho, no less. (It turned out that was the smaller of two masses, but I stopped looking when I found the first mass.) Oddly enough, the lump I detected wasn’t near the outward sign I’d seen in the mirror. I’m still not sure if the visible “dimple” had anything to do with the mass, but it was what spurred the exam at any rate.

I was sure I had breast cancer as soon as I felt the lump. It wasn’t a panicky feeling, just a quiet knowledge that life was very likely going to change, at least for many months. The next morning we called my gynecologist’s office seeking advice about how quickly we should return to Appleton for tests. They scheduled an appointment a week away, so we changed our plans to return home for the appointment rather than spending an extra week camping and hiking in Glacier National Park.

We arrived home on a Sunday. My mammography, ultrasound, and biopsy was Monday morning, June 25th. (I learned that day I had skipped my mammogram the previous summer – so my last had been two years ago.) My diagnosis, extensive invasive ductal carcinoma, came the following day.

I had a left mastectomy on July 31st and another surgery August 3rd to remove more skin and tissue for “clear margins.” Two sentinel lymph nodes showed cancer and several nodes were removed. Chemotherapy began August 22nd. I’m two rounds down, four to go. After that, it’s radiation for 6 weeks – and then I’m down to just the continuing IV antibodies until sometime next spring. The antibodies are given because of my tumor’s HER2 status, whatever that means (Greg can explain it; I’ve given up). After that, there’s recommended hormone treatment because my cancer cells were also hormone receptive – which is another condition I’ll leave to the experts to explain.

It’s been a long summer and autumn promises to be equally long. Before I knew I had cancer, life was passing much too swiftly. I did a lot of running, it seems. Now that the pace has slowed, I can scarcely remember where it was I’d been running to.

Going Hairless

This photo is second in a series of still-life shots Katy and I staged during a silly photo shoot last weekend. Our "photo art" features my former hair (cut short in preparation for inevitable baldness) in unusual settings. The photo being replaced today, for instance, showed my hair in a coffee mug -- which seemed appropriate as chemo has mysteriously taken away my love of coffee. Not all of our still-life "hair" shots have such meaning, so don't strain to find the symbolism!

Today's chemo

Katy drove me today, took photos, and stayed a bit before heading to Madison to visit her friends with a new baby boy.

I stayed on to learn that, indeed, no 2 chemo days are the same, despite the same IV drugs. Today's visit slated for 4 hrs ended up taking 6. All the pre-chemo "bags" went well (2 different antiemetics, steroids, and again 50 units of Benadryl to prevent reactions and make me incredibly stupid) -- and then they started Taxotere. A few minutes into it, I noticed my sight darkening and felt a roaring heat creep from my upper chest to the top of my head. Rapidly. I was about to summon a nurse when I felt my throat close. I summoned more earnestly and was immediately attended by 4 nurses eager to kick into action: Disconnect IV, set up oxygen just in case, and call my oncologist. They said my face was bright red. The panic was over in minutes and I started to feel normal (as normal as one is on 4 pre-chemo drugs). No oxygen required.

My oncologist arrived posthaste and ordered a shot of cortisone (MORE steroids) and another 50 units of Benadryl (I became even stupid-er). They restarted Taxotere, but at a slower drip rate. I tolerated Taxotere just fine 2 weeks ago, but at a much slower rate. So they started slow and titrated every 20 minutes until reaching the level it had been when I went into shock. Every time they upped it, of course I waited for my throat to close again. It didn't.

A sweet old lady in the next chair wearing black orthopaedic "Mary Janes" and white anklets had been sleeping before the flurry of activity at my chair. When things settled down she asked to have her chair back uprighted. She later told me she sat up in order to keep an eye on me (thus earning the adjective "sweet"). She has colon cancer. She was 75, but I would have put her at 85. She'd been living alone until May, but now is in a nursing home on a waiting list for St. Paul's assisted living. She was happy and resigned. I contend she is wasting her time at the cancer center.

Paul Van Wyk stopped by during treatment, just before Greg arrived to pick me up. That was SO nice. (Next time, frozen yogurt.)

Feeling well this eve and don't expect to sleep (double steroids). Tomorrow marks 2 weeks from start of chemo -- when my hair is predicted to eject. I don't care, and glad I grizzed my head (sorry G) because going through this hoo-hah while trying to make my previous "do" presentable would be unbearable, to be sure.

Pray for Benda and Josh as they took Sam to Marshfield Clinic today to give THEM a chance at helping Sam.

Chemo, Round II

Yesterday was awesome. Katy and Greg and I played all day and Paul Van Wyk stopped over to drop off his Nero Wolfe DVDs so we could introduce Katy to Nero and Archie and the gang. It was the first day in 14 days that I felt completely well -- no side effects, no weird sensations, no plugged ears. BUT TODAY IS CHEMO DAY.

Labor Day 2007

Little did I realize when we converted our dining room into a library a few years ago how much we were going to enjoy the mornings from our look-a-like recliners! Today is a perfect weather day and the front garden is all a-twitter with goldfinch activity.

Katy is visiting this weekend. Neither of us felt one-hundred-percent yesterday, so it was a wonderful opportunity for her and I take up the recliners with our respective laptops and share favorite sites, stories, and laughs -- and for her to answer all my "idiot computer questions."

Greg, of course, roamed in and out of the room as he puttered with finishing off our upstairs bathroom project -- so what perfection! Katy and I could relax knowing that something productive was happening despite our lethargy.

Today promises much of the same; that is, if Katy ever wakes up.

NOTE: Katy did eventually wake up and we did a series of photos using the pile of hair that was recently removed from my head in preparation for going bald, anticipated sometime this week.