Archive for August, 2005

Boys with hats

Wednesday, August 31st, 2005
Herceptin. Herceptin. Herceptin. Herceptin.
Herceptin. Herceptin. Herceptin. Herceptin.

My hats were once so important to me. Now they are scattered all over the floor of my bedroom closet. Once my daily camouflage for what cancer had done to me, my hats are now toys. Joey and Danny play with them and toss them around and wear them — sometimes one at a time and sometimes they pile as many as they can on top of their little blond heads. The hats hold no real significance to them — they are just playthings and while Joey can recall that I wore them at one time, the emotion wrapped up in the pale blue sleep cap and the black Nike ballcap and the yellow bucket hat is lost on him. I consider this a blessing — that one day, he and Danny will likely have very little memory of this cancer adventure and that they may only remember what fun it was to wear so many hats.

Jacki Donaldson

Fading

Thursday, August 25th, 2005

I’m fading. It must be the Herceptin. Because for the months of June and July — my only treatment-free months so far — I felt so strong. That’s when I began my over-the-top exercising and felt more alive than ever before. But now I am so tired that I cannot exercise. On Tuesday, I tried to walk on my treadmill and stopped after one mile. I could not continue. My body was heavy and weak and fatigued. Yesterday I tried to walk outside in my neighborhood and after just a short time, I felt like I could hardly lift my legs. So I returned home — defeated.

I thought I was coming back to life. In many ways, I am. My blood looks good. I had it checked again today and my counts are all in a perfectly normal range. My hair continues to grow — and I actually had to get a haircut yesterday. My moods have been positive and steady. But my energy is low which makes my daily routine difficult. This is frustrating and disappointing.

I plan to take it easy. I will get plenty of sleep. I will take some time off from exercise. I will accept help. And I will give myself permission to be feel weak and tired. I have no other choice.

Jacki Donaldson

Learning to surf

Sunday, August 21st, 2005

Strange things are happening to me. For one, some of my bottom eyelashes are breaking and some are falling out. So I have a mixture of long eyelashes, short eyelashes and missing ones too. And one of my big toenails has cracked in half and I have no memory of an injury that would have caused such a deep tear. Right now it’s hanging on and I keep painting it with red polish to seal it in place until it grows out.

Both of these are side effects of chemotherapy, but not the chemo I’m currently receiving. They are symptoms of my first chemo, the harsh, toxic, deadly one that ended on March 4th. Why these things are happening to me now is not clear.

I also have dry eyes, so dry that at times I can hardly blink. I feel like my contact lenses are going to ball up and fall out. This is strange because one side effect of my current Herceptin therapy is watery eyes. I’d actually like a little of that side effect right now.

The joy of having my menstrual cycle return and the knowledge that I will not enter early menopause is tempered by the hassle of unpredictable cycles and periods that come and go over the span of two weeks.

And my left armpit, the one with four missing lymph nodes, is getting tight and sore. My physical therapist could tell from massaging this area that the muscles feel like ropes. She said sometimes this happens six months to one year after surgery. Despite my exercises to increase my range of motion, this still happens. She wants me to come back weekly for massage, a perk in the whole scheme of things.

Recovery takes time. There are peaks and valleys, waves of good and bad. I read a quote in a magazine the other day that sums it all up:

“We can’t control the waves, but we can learn to surf.”

Jacki Donaldson

Taking it all in

Wednesday, August 17th, 2005

I sat in the big infusion room today while Herceptin dripped through my veins. No private room this time which is fine with me. In the pink lounge chair, lined up next to other patients, I get to see the action. I watch the nurses buzzing around — accessing ports and sticking veins, fetching bags of liquid drugs from the pharmacy, starting infusions, stopping infusions, talking with patients, and basically managing the business of chemotherapy. I listen to music the nurses must choose throughout the day — last time it was Frank Sinatra; today it was some other slow medley of old tunes. I watch patients walk to the restrooms while steering their IV poles around the crowded room. I notice people sleeping during their treatment and others talking with caregivers. And I hear snippets of conversation. Today I heard one young woman talking with her nurse about a drug she mixes and drinks following chemo. She said it tastes awful and was wondering if she could receive the drug through her IV before she departed. The nurse said it could be done — and she did it. The drug, Mesna, was one I’d never heard of before so I assume she does not have my same cancer. I also overheard a social worker talking with a patient receiving her first dose of Adriamycin and Cytoxan — standard for breast cancer and the same drugs I had earlier this year. This woman must have the my same cancer. The social worker prepared this older woman for what lies ahead — hair loss and side effects such as nausea. She was given a run-down of anti-nausea drugs and was told when and how to take them. She took it all it in while reclining in her pink chair, toxic drugs entering her bloodstream.

In my own pink chair — chair #2 — I felt for this woman. I felt apprehension and fear and the unknowns of the road ahead. Will this woman tolerate these harsh drugs? Will her body remain strong or will it break down? Will she cruise though therapy like some do or will her body weaken to the point of hospitalization? Will she show off her bald head or will she cover it with wigs and hats and wraps? It’s a mystery that unfolds over time. It’s scary and it’s empowering.

My own mystery with Herceptin is just beginning. I tolerated my first dose well and felt only a bit of nausea following my treatment and the morning after. I’ve been tired here and there and my eyes are dry but these symptoms could be from anything — staying at home with two kids, my exercise routine, allergies. In all, it’s been smooth sailing. And I hope to survive today’s treatment as easily as the first. And in three weeks I will report back to the infusion room where I will take in the sights and sounds once again.

Jacki Donaldson

Gram

Friday, August 12th, 2005

My grandma’s 89th birthday was yesterday — August 11. I didn’t get to celebrate with her, though, because she died two years ago, just before her 87th birthday. It’s lonely without her. I miss her spunky way of being, her spirit, her sense of humor. I miss her family stories, her love of roses and gardening, her cooking. I really miss her strength. She survived a lot in her life yet was always at peace. She was a religious woman and had a faith that could move mountains.

Joey tells me that even though we can’t see her, Gram is still with us. He thinks that people who pass on go to heaven and the clouds become their eyes. So perhaps Gram is watching down on me through the clouds, aware of my happiness and sadness and triumphs and pain. Maybe she knows of my battle with breast cancer and although I wish she was right here with me, I will borrow from her strength and imagine what she would be telling me right now — that God only gives us what we can handle and that I will be fine in the end.

Happy Birthday, Gram.

Jacki Donaldson

Uncertainty

Wednesday, August 3rd, 2005

I have been feeling tired for the past few days, so tired I can hardly hold my eyes open once afternoon rolls around. Worried that my blood counts may be off again, I went today to have a CBC (complete blood count). It was normal, even more normal than it was last time I was checked. My white blood count is 6.8 or 6,800 with the normal range falling between 4.0 (4,000) and 10.0 (10,000). So I am well. I told the nurse there must be some other reason for my extreme fatigue. She guessed that maybe I am pushing myself too hard. Maybe she’s right. Maybe it’s the double, sometimes triple workouts I’ve been doing each day. It’s not that I’m obsessed. I just have been feeling so strong lately that my usual workouts (walking 2.5 miles per day) seem like warm-ups. So I keep going. Or I walk again later in the day. And then I walk again on some days. I consider this my comeback, a return from illness and weakness. I’m alive. And I’m celebrating. But now maybe my body is telling me to slow down, to halt the celebration a bit. Or maybe it’s something entirely different that is making me so tired. Maybe it’s Joey.

Joey is the love of my life. And he is the one person who challenges me and tests me and zaps my mental reserves. He has always been a “spirited” child, a child with more of everything, more energy, more enthusiasm, more defiance, more tantrums, more outbursts, more whining (and more love and sweetness and kindness too). John and I have spent 4 years trying to determine how to best channel Joey’s energy, redirect his inappropriate behavior, and praise what he does well. We seem to always fall short. We’ve relied mostly on time-out and removal of privileges. Both work for short periods of time but there’s no long-term learning. So we’re trying something new. I am a bit uncertain about this approach but it’s apparently researched and seems to works with kids with severe to mild behavioral issues. My therapist armed me with packets of information on this technique. The basic philosophy is that behavior that is rewarded will be repeated and behavior that is ignored will eventually fade away. So when Joey shares with Danny or listens to what we say, we will reward him verbally and perhaps with a small token or favorite activity. When he whines and kicks and screams, we will not respond. We won’t make eye contact and we will focus our attention on something entirely different. We won’t ignore harmful or destructive behavior, but his annoying, bothersome behaviors will not receive attention. Research shows that we will see an increase in this poor behavior at first and then will see it decrease. Sounds simple enough. It always seems easy on paper. Then the moment arrives, we choke, and we fall back into our old routines.

Tonight we were out to dinner and Joey asked for candy once he had finished eating. Since he just had two cavities filled today, we said “no.” We should have told Joey “no” and then not said anything more. Move on. Talk about something else. I had already read about how to do this. But Joey kept asking and we kept saying “no.” We kept justifying our answer and telling him why he could not have candy. He persisted and we responded. We paid too much attention to his negative behavior. We need to do better. We need more practice.

Maybe tomorrow will be better. When I’m not so tired.

Jacki Donaldson