Cancer: the fickle fiend

Gray on gray, the tumor filled the ultrasound screen. The interloper had enmeshed itself in my breast, slithering between my cells to expand its grasp on my body, on my life.

“A cyst has defined edges,” the radiologist said.

Not like this.

Cancer. Me. Cancer.

I donned the shroud of patient and, after weeks of worry, biopsies and MRIs, underwent a lumpectomy. My medical oncologist advised chemotherapy, but lacked evidence of its benefit for my situation. I reluctantly agreed, but stopped after the first infusion, concerned about permanent neuropathy. I finished treatment with seven weeks of radiation, absorbing the daily dose over lunchtime. Eventually my hair grew back and life went on.

I’m dubbed a cancer survivor.

Survivor? Hell, I don’t know the meaning.

My friend, Kathy, exists in a world filled with PET scans and CA125 tests. Multiple rounds of chemotherapy have eaten away at her organs—collateral damage in the quest to kill the relentless predator that invades her body. Fragile kidneys, neuropathy-torched feet and constant exhaustion task her every waking moment.

I feel like a Roman at the Colosseum as I watch Kathy in battle. A gladiator in the arena, with doctors and nurses offering her weapons, my friend fights alone. She advances, slashing at the evil, pushing it into retreat for a few months, but the disease finds a vulnerable spot and attacks again. I pray and offer support, the limitations of my role as a spectator.

For me, cancer has been a hiccup in my life—a pit stop in which I needed to “get fixed” before I roared back into the race.  I grouse about lousy drivers, too much work and crappy weather. Cancer hasn’t forced me to evaluate my life, to change it. I chew up every day and expect there to be a fresh one tomorrow. I make plans without wondering if I’ll live long enough to see them through.

Days like today, when Kathy tells me another growth requires surgery or chemo, I realize how lucky I am, and understand not the meaning of survivor, but of survivor’s guilt.

Sept. 25: Hair today, gone tomorrow

The only way to stop the shedding!

My hairball grew -- and this is without the hair pulled in the wind!

This morning I looked like me, now I look like G.I. Jane. I have the slightest stubble sticking out of my head. I can’t believe I still have that much hair left! On Friday the shedding got worse, the handfuls of hair got bigger, and the overall hair loss picked up pace. I grossed out my coworkers by showing them the shedding by tugging at my thinning tresses and pulling out handfuls in front each of them. They didn’t want me to do it again, and I suspect Norman, from the cleanup crew, is wondering who in the world is going around yanking out hair.

It took forever to get ready Friday morning. Every time I ran the comb through my hair, or tried to curl a clump with the curling iron, the item was strewn with strands. I kept sweeping my hand over the counter and my clothes to pick up the straying hairs. I really got sick and tired of the never-ending layer of hair over my face, my clothes, the floor, the couch, the bed …! And that’s not the only place I’m shedding, if you get my drift — but my eyebrows, eyelashes, and the hair on my legs and arms currently all remain intact.

I knew I would have to get my head shaved on Saturday. Otherwise, I surmised, by Wednesday people would notice my lack of hair. This morning I looked okay, but when I touched my head with my hand, I couldn’t comprehend the little bit of hair between my palm and scalp. It was freaky. And, as I mentioned, I’m so over shedding like a sheepdog.

I didn’t sleep well, wondering if all my hair would be on my pillow in the morning instead of on my head. When I got up, I got dressed, threw on some makeup, ran a brush through my minimal mane, and headed up to Milwaukee to “do the needful.”

My wig for bumming around

David was busy with another client, so I looked around to find a second wig to wear off-hours. I wanted something I could throw on to go to the grocery store or walk the dogs in the neighborhood. I picked out a short one that’s a little more stylish than I’m used to. It’s a little “poofy” in the back, and the front is asymmetrical. It’s cute, but it’ll take me a while to get used to it. To me it looks like I’m wearing a wig.

While perusing the wigs, two young people came into the shop to pick up a wig for the girl’s mother. It sounded like her mother, like me, selected her wig before undergoing chemo. I mentioned to the girl that the hair loss came on fast. She said she didn’t want to tell her mom that. I wanted to go up to the girl and wrap my arms around her and tell her that it would be okay. That it was just hair and it would grow back.

When the time came to get my head shaved, David offered me a box of tissues, he said some women needed it. I told him I’d be fine, and we exchanged sun-tanning stories while he cut off my hair and then buzzed my scalp. Before I knew it, he was done and I looked like an Army recruit.

After David shaved my head, I put on a nylon cap so I could try on some wigs. Without the stubble showing through, I looked like John Luc Picard from the Star Trek series. David assured me that I will be losing the stubble, so I’d better start practicing Captain Picard’s standard line from the series, “make it so.” I think I’ll pass on the uniform, though.

David trimmed the bangs of both wigs and explained to me how to care for them. I was advised to pick up a light cap, that women prefer something on their heads when they go to bed. I also suspect it’ll come in handy when the days get cooler and my furnace is set at 68°.

I drove off wearing the funky short wig. On the way home I took it for a spin, stopping at the gas station and the local coffee shop. As I said, it will take some getting used to.

Without the wig, my head is experiencing brand-new sensations. When I walk, I feel the breeze against my scalp, and when I put on my shirt, my scalp felt the fabric.

I’ve decided to take it easy today, I need to get used to seeing myself this way. For the most part, it doesn’t startle me, but it does look a little strange when I have no clothes on — breasts and a buzz cut just don’t go together. I’m comforted to know though, that with makeup on, you can tell I’m a female, I don’t look like a man in drag.

Whew.

Sept. 23: Good-bye hair!

The hair I lost this morning

It’s lively in the oncology waiting room today. There seem to be more “young” people interspersed with the seniors.

My hair is falling out, no question. When I run my fingers through my mane, I end up with a clump almost every time — looks like I’m holding hair fringe. If it keeps up like this through Saturday morning, I’ll have to get my head shaved. I normally have thick hair, but even mine can’t hold out with this volume of hair loss.

Something else I’m curious about: chemo can put women into menopause. I’m wondering if my single dose finished off my ovaries. At this point in my life it’s pretty much inevitable anyway.

The bloodletting is done and now I’m in the infusion room waiting for the results. It’s quieter back here today.

The first time I was in the oncology waiting room, I saw a woman with a halo of fine, light hair. She looked like a newborn. I guess post-chemo can be viewed as a rebirth, sort of like a phoenix rising out of the ashes of illness. A new lease on life.

Fifteen minutes with the nurse, and I was done. She asked me about the various side effects and my overall status. Since I feel normal, there wasn’t much to talk about. Again, my blood work came back in good shape and my blood pressure is back to normal. So I returned to work and finished the day.

Tonight I stood outside in the brisk wind for about five minutes and just kept pulling out hair, tuft after tuft. It never stops coming out. I work in the kitchen, it falls in the sink. I brush my teeth, it falls in the sink. This morning I was late to work because I kept combing my hair and the strands kept coming out. After I blow dried it, a small mass accumulated on the tile floor. When I look in the mirror, I can’t believe I still look the same. Man, I must have a lot of hair!

Sept. 22: The fallout from chemo

The shedding has begun, I noticed it this morning as I pulled out small handfuls of hair. I have the wig at the ready, in case it gets so bad I need to take cover beneath a synthetic substitute. I guess there won’t be any more trips down the highway with the convertible top down, it would be too hard on my little follicles, struggling to keep hold of every strand of hair!

I didn’t really get much in the way of mouth sores, just one little spot, but the roof of my mouth got “textured,” like sandpaper. The tip of my tongue felt numb, and for a couple of days the top of my tongue was almost completely white.

The drugs worked great for nausea, I never had any problems on that front. I lost my appetite for a few days, and then I was famished for a couple. At that point I fell madly in love with cottage cheese and scrambled eggs. Chocolate still tasted good, but things like apples, orange juice, cranberry juice, yogurt and ginger ale all tasted like it went bad. Nuts and dried apricots were good, some pastas were good and some were not.

I never imagined I could be as tired as I was, for about four days. Two of the days I slept well, the other two were toss and turns all night. I also felt loopy for a few days, unable to concentrate on pretty much anything.

The chest pain lasted for about four days. It hurt enough to be uncomfortable, but not enough that I needed any major pain medication. It was more scary than painful. But the irregular heartbeat scared me as well. Nothing like feeling your pulse and every so often your heart does a little jig. Yikes.

I also had little shooting pains throughout my trunk. The nurse said that was from my nerve endings. As for numbness, most of it has disappeared. My lips were tingling, and I had the slightest of tingling in my fingers. I still have a dead spot on the heel of my foot, but it doesn’t affect my balance. When I touched my lower legs I could feel it, but it was a bit muted. My nose is also no longer numb.

There was a slight dizziness for a few days — one day I felt safer in the car than walking — pity my fellow drivers!

My skin didn’t change at all, and I didn’t get diarrhea. I had the opposite problem, and my digestive system still seems to be a bit sluggish.

No bleeding anywhere – gums, etc.

I was surprised to bounce back so quickly. The differences between Monday and Tuesday were like night and day, and by Thursday I no longer needed more sleep than usual. Saturday morning I was back on the treadmill.

Normal, once again!  😉

Sept. 21: What’s next?

Chemo is cancer. Through biopsies and the surgery, I never really felt like I had cancer. It really began to sink in when I walked around with a picc line in my arm and dealt with the effects of the chemotherapy.

But now I’m feeling great, as if I never had an infusion. On Thursday I meet with my medical oncologist again. After this session I should be ready to focus on radiation treatments. I’m more than ready to get this done and over with!

How do they do it?

As I sat in the infusion room, I observed the patients around me. At one point an elderly lady wearing a gray wig shuffled her the way to the bathroom, pushing her infusion pump along with her. My experience with chemo was miserable, but it was nothing compared to the treatments others undertake. In addition, I got to quit after one dose.

How do the elderly go through it? How do their fragile bodies handle the toxins coursing through them? How do they deal with the extreme fatigue, living by themselves? It was challenging for me at my age, I can’t imagine going through this while in my 80s. These are truly brave souls.

Sept. 16: Day seven after chemo

This day was to be the low point from the blood levels perspective. I went in for my blood work and to have my vitals checked. I was curious to see my results, as I felt like my old self again.

The infusion nurse told me that all of my blood work came back normal! No wonder I felt so good!

But, while I was waiting to meet with the nurse, I listened to the conversation taking place behind me. It was between one of the nurses and another cancer patient. I had seen her walk around, her blonde hair dry and thinning, covered by a baseball cap. She told the nurse it was the first day she hadn’t vomited. The nurse checked her out and determined that she was extremely dehydrated and  had to hook her up to a bag to get her rehydrated. In addition, the poor woman was told that her immune system was too low to continue treatment at that time.

I am so, so lucky that I had the choice not to go through that hell.

Sept. 14: Day five after chemo

Tuesday I started to like feel myself. Monday night I slept long and hard, which helped immensely. I started taking Tylenol regularly to help with the pain, so I could actually sleep.

I met with the physician assistant and she explained that the pain in my chest was probably from the Neulasta. Sometimes it causes pain in just a single location of the body, not in all the long bones.

I asked her how much hair I would lose, and she told me she didn’t know. It usually began falling out about 2-3 weeks after the first infusion, and usually patients were getting their next infusion about that time. So we’ll  just have to see. The wig is sitting in my spare bedroom, ready to be used if needed.

While I was still in the doctor’s office, they took out my picc line.

I felt finally as if I had a little traction. My thought processes were back, so I was able to follow-up on outstanding issues and start moving forward again.

Sept. 13: Day four after chemo

I decided I might as well go to work, I was afraid if I stayed home I’d mess up my sleep schedule even more.

I don’t think I’ve ever been as tired as I was on Monday. I also felt as if there was a veil between me and the rest of the world, or like I was underwater. I had trouble focusing, but somehow made it through the day. I was crazy to drive.

At some point I realized that Tylenol helped reduce the pain in my chest.

I decided to stop chemo and called my oncologist’s office to let them know. They called me back, very supportive. They said my oncologist was fine with the decision, and I should come in the next day to see how I was doing.

Sept.12: Day three after chemo

This day was strange. I was still tired and felt very drugged. I slept off and on throughout the day, and talked to a number of folks on the phone. I just didn’t feel myself. Again, I didn’t have any nausea.

I couldn’t concentrate. I planned to work on my blog, but I couldn’t put two words together, my thoughts were all over the place. I tried to write, but ended up just staring at the screen.

I began questioning why I did the chemo and whether to continue. I had neuropathy, and my thoughts were so jumbled I couldn’t even read a book.

Again about midnight I woke up. This time my chest hurt, it felt tight. No matter what I did, it didn’t get better. I tried walking around and laying in every position imaginable, but it wouldn’t go away. I decided to get cleaned up and see what happened, so I bathed and washed my hair. I then tried to lay down again, but the pain was no better.

I had to know I wasn’t having a heart attack, so I drove to the local emergency room. They checked my EKG and it looked okay. They did blood tests and did a CAT scan to check for a pulmonary embolism. Three hours later I was discharged, as everything checked out fine.

Wouldn’t you know it, on the way home the low tire pressure light went on, so I had to make a detour to the gas station to fill up my tires.

I must live a charmed life.