“I’m coming,” I said to him. “Just let me get my smoothie.” I kissed the kids and my mom, grabbed the smoothie and a lunch I’d packed, and we were off.
“How are you?” Doug asked once we pulled out onto the road.
“Good. Well, better than I have been. I’ll have to see how today goes.”
“Something different about today?”
“I’m starting another drug.”
I wondered if he was worried about my throwing up all over the place.
“You’ll tell me how to get to where we are going, right?”
“Of course.”
I was happy to be spending the day with Doug, but didn’t feel very talkative, so we didn’t chat much more. I knew he wouldn’t mind. I was most nervous about the possibility of a reaction but didn’t want to admit that, and certainly not to my brother-in-law. Sharing what I was experiencing—even with the people closest to me—wasn’t getting any easier, and I didn’t want anyone to feel bad for me. I also didn’t want them to think that everything was always about me, either. More often than not of late my conversations with people were all about me, so when I had a chance to talk about something else—or not talk at all—it was a relief.
My blood work was even better this time. I felt great about that, as though it was confirmation that my diet really was working. As I pressed the button in the elevator to head up to the chemo suite, I thought, If it is, then maybe I do have power over something.
When my number was called and we entered the suite, I was surprised to be led to a stretcher. “Before, I always got one of those,” I said to Doug, pointing at a lounge chair. I’d told everyone about them, how sitting in them was like being in someone’s comfy rec room. I could tell Doug was taken aback by the whole situation. Everyone with me reacted the same way—I could see it in their eyes. This wasn’t the sort of thing they saw every day. Doug tried to keep me smiling as if it were his job to make me feel comfortable. He didn’t realize I was used to it and that I was usually the one who tried to make the people who came with me feel comfortable.
The nurse who was going to be helping me overheard my comment. “You’ll be here such a long time, we give you a stretcher so you can fall asleep,” she said.
I did know that instead of forty-five minutes for the AC infusion I’d been used to, the Taxol infusion would take three to four hours—they infused the drug slowly because of the increased risk of a reaction—but I hadn’t realized that would change things.
The nurse handed me a Benadryl. “That’s a precaution against a reaction. And the stretcher’s not just for naps. If you do have a reaction, it’ll be easier for us to treat you if you’re lying down.”
I got settled, and the nurse started the IV, then sat beside me to monitor my vital signs. I kept looking at my watch.
“You okay?” Doug asked.
He looked so concerned. “Yeah,” I lied. “I’m fine.” I knew the first ten minutes were crucial in terms of a reaction. Those ten minutes took forever. I kept expecting something dramatic to happen—hives, chills, fever. I was anticipating it. The nurse watched me intently, waiting for something to happen, which only increased my fears. What worried me most was the knowledge that when there was a reaction, it was fairly severe. Would I have an anaphylactic reaction? I tried calming myself down by breathing deeply. It didn’t work.
“Are you having trouble breathing?” the nurse asked.
“No.”
“Do you feel flushed at all?”
“No.”
“Are you feeling in any way different than you did before the infusion began?”
“No.”
The questions continued, each making me more anxious. After several more minutes of interrogation, I was pleased and surprised to have passed the ten-minute mark.
“Great. The chance of having a reaction after ten minutes is unlikely, and the chance of having a reaction at your next appointment is even unlikelier.”
When it was clear that I was going to be okay, the nurse left us alone, just Doug, the Taxol and me.
I relaxed. One less thing I needed to worry about. I even started to feel sleepy enough to think about taking a nap. The only thing I was now worried about was if I would drool in front of Doug.
Chapter 22
GRASPING AT STRAWS
By the Thursday after my first Taxol treatment, I was still feeling good—much better than I had during the AC treatments. A slight headache, but no nausea. And I was energetic. It was a huge relief. I knew some side effects could appear, and apparently one in three women had such achy bones they needed Tylenol 3 or even Percocet, but I was keeping my fingers crossed. I had tried Percocet after my lumpectomy, but it was so strong that I didn’t use too much of it. I had also heard it was highly addictive, so that was another reason I wanted to stay away from it. Was it possible after the hell of my first four AC treatments that I would have a better-than-average experience going forward?
Whatever was going on, I was determined to take advantage of feeling good. I pulled my wig out of my closet and tried it on again, but realized right away how itchy and hot it felt—the hot flashes didn’t help. I thought the wig looked funny, too, not natural at all. In a weird way, I also think I was getting used to having no hair, and I was already so self-conscious at that point that I didn’t want to make things any worse. I packed the wig away and got out the plans for our new house.
A couple of years earlier, Greg and I had started house hunting, or rather property hunting. We’d built the house we were living in, and loved it, but when we put a pool in the backyard, we’d very much limited the space there. We knew we could probably make money selling the house, so we started looking for property to build on. We’d seen a few one-acre lots, but they either weren’t in a desirable area, needed a lot of work, or were just too expensive. We were starting to think we weren’t going to be able to find exactly what we wanted.
One day I visited Susanne, and told her about our dilemma.
“Have you ever looked at that place?” she asked, pointing out the window to a vacant piece of farmland nearby. She and her husband lived on a giant piece of land not far from us.
“It’s not for sale.”
“Neither was ours when we bought it. Years ago, a lot of the property in this area was owned by a guy who lived in Germany. He bought hundreds of acres, severed it into smaller portions, then sold them off to other Germans under the premise that the properties were close to Niagara Falls. It might be worth looking into.”
“But it’s not close to Niagara Falls.”
“I know, silly, but when you live in Germany, this is really close.”
We laughed, but Susanne had piqued my interest. I tracked down the name of the owner through public records, and in the wee hours of the night, to account for the time change, tried calling. After three wrong numbers, I was about to give up, but finally got the son of the owner. He told me someone had offered 40,000 euros for the land. I made a counteroffer for higher. I felt rather giddy about that.
“Let me speak to my father and get back to you.”
The next day, I got a phone call. They had accepted my offer. I had just purchased a thirty-five-acre piece of land for under $70,000 Canadian. I was ecstatic.
“They accepted my offer,” I told Greg when he got home.
“You’re kidding!”
“I’ve already called the bank and the lawyer and he’s working on the paperwork before they can change their minds.”
“What a steal!” he said. “Nice work!”
I knew that was only the beginning, though. I looked at the house plans; we were still working on them. As I glanced around our current house, it was hard to believe we’d be leaving it. We’d created so many memories in it. Brought both of our children home from the hospital to it. Spent every birthday and Christmas in it. But I’d also been diagnosed with cancer there. I jotted some notes on the plans. Maybe moving would allow us to make a fresh start, put some things behind
us.
It was also time to make decisions about yet another drug, metformin, which was undergoing clinical trials. Margo at CAREpath had called to tell me about the trial. From my very first talk with her, she had suggested asking the team at JCC if there were clinical trials I would qualify for.
“The idea is daunting,” I’d told my mother. “I’ll be acting as a lab rat, in essence.” I had let Margo know I didn’t want to participate in chemotherapy trials. “I want to be given drugs that work. I don’t want to mess around with my life.” But the metformin study sounded promising. Honestly, anything that showed any sign of hope would have sounded promising.
Both my oncologist and surgeon had told me that because of the particular kind of cancer I had—triple negative—if there was going to be a recurrence, it would happen within the first two years. Thus if I made it to three years, it was highly unlikely there would be any recurrence at all. From my research, I knew that many women who, unlike me, had estrogen receptor positive breast cancer could receive drugs called aromatase inhibitors like Herceptin and tamoxifen, which acted as estrogen bodyguards—they prevented estrogen from feeding cancer. Those women were able to take the drugs for only five years following chemotherapy, but that was like a “get out of jail free” card they could use to gain five years without a recurrence. For me and other triple negative patients, there was no such thing. I would just be sent on my merry way.
Margo explained when we talked, though, that doctors had noticed that cancer patients who had Type 2 diabetes and were also on metformin—a drug used to control and keep insulin levels low—had lower recurrence rates. The clinical trial would look at whether metformin could decrease or affect the ability of breast cancer cells to grow and whether metformin would work with other therapies to prevent cancer from recurring. Given that situation, I was keen to find out more, and naturally I met with the clinical trials nurse, a woman named Helen. I had a lot of questions.
“Do the diabetes patients have lower recurrence rates because of the metformin or because their insulin levels are low?”
“Recurrence rates are lower because of low insulin levels,” she said, “which are made low because of the drug.”
“Can a person achieve low insulin levels with diet and exercise alone?”
“Absolutely.”
I stared at her. Essentially I could participate in a clinical trial and take metformin once a day for the first month, and then twice a day for the next five years, or I could eat the right food, exercise, and avoid sugar to keep my insulin levels low without the help of a drug. I was puzzled. I wanted to do everything possible to reduce my chances of a recurrence, but the last thing I wanted was to take even more drugs.
For the next three days, all I could think about was metformin. I asked my mom her opinion, I asked Greg, I researched it on the internet, and I struggled with the decision. Should I take part in the trial? Was it worth it? Soon, however, I would forget all about the trial.
Chapter 23
WHAT A PAIN
After three days of feeling glorious, my legs began to ache—a dull, insidious pain that is a nasty side effect of Taxol. I was devastated. I was clearly delusional to think I was out of the woods, that nothing could be worse than the vomiting and nausea associated with the AC part of chemotherapy. I thought I had avoided the side effects altogether. What a cruel trick my brief spell of wellness had been.
Later that night, as I lay in bed trying to fall sleep—already difficult due to all the steroids—I began to feel the oddest sensation in my legs in addition to the aching. Like they wanted to go for a walk without me. Although they weren’t moving spontaneously, the only thing that made me more comfortable was to move them. I couldn’t escape that feeling—it was what I imagined restless legs syndrome must be like. No matter how hard I tried to keep quiet so I could fall asleep—and because I was trying to not wake up poor Greg—I couldn’t stop moving my legs. I was near tears I was so exhausted.
By morning I felt like a Raggedy Ann doll that had lost most of its stuffing. The sensations in my entire body seemed heightened, and although the number of bones and muscles in my body obviously hadn’t changed, I felt as though I could feel exactly where they all were. Worse, I could swear that my bones were being crushed over and over again. Usually I considered myself able to tolerate pain well. If relief from pain was ever necessary, I popped a Tylenol. When it came to what I was suffering with Taxol, though, Tylenol didn’t even touch the pain. Neither did Motrin. I took a Tylenol 3—I knew it had codeine in it—but after waiting anxiously for two hours for the aches to subside even a little, I realized this wasn’t doing a thing, either. Could Taxol actually be the more evil chemotherapy drug? I was getting so cranky, I felt sorry for everyone around me. I was sure I was a real treat to live with.
Charley didn’t notice. “Mommy, can we go outside and play in the snow?” she asked. The snow had piled up from a snowfall the night before. We all got bundled up, Rudy included, and went out. I grabbed a shovel for myself and a smaller plastic one for Charley and went to work. Within an hour the driveway and sidewalk were shoveled and my body was fatigued. That helped a little with the achiness and the restlessness of my legs, and Charley and Rudy had fun.
I knew I couldn’t keep moving all day, though. I needed something to take the pain away and I couldn’t get another prescription right away from my doctor; it was a Saturday, so I was out of luck. “Greg, could you please, please go to the drugstore to get me something for the pain? I can’t take it anymore.”
“Absolutely, but what’s going to work if Tylenol 3 doesn’t?”
“Aleve. Get Aleve.” I didn’t have a clue, but I was desperate. I knew it was a nonsteroidal anti-inflammatory drug, and when I’d had menstrual cramps, it was the only thing that took the pain away. When Greg got home, I practically tore the bag out of his hands and gulped down the pill as soon as I could get it out of the bottle. My instincts were right. After about an hour, the pain subsided. Unfortunately, after I took the Aleve, my nose started to bleed. Not drastically, but enough that every time I had to blow my nose I started going into another room so the kids wouldn’t see it.
That’s what I did: Throughout this whole thing, I never allowed them to see anything that might make them scared or nervous. As exhausted, nauseous, scared or anxious as I might have been, I faked it in front of my family, my friends, everyone. I didn’t want anyone to worry about me.
And I had to admit, it was a bonus that Aleve didn’t give me the awful constipation Tylenol 3 did. As crazy as it sounds, it would sometimes be three days before I’d be able to go to the bathroom properly if I took it. My digestive system was sensitive as it was—unless I followed a fairly regular diet, things got totally off schedule. None of the other drugs seemed to have the same effect, but I had learned to have a gentle over-the-counter laxative on hand, just in case. And with all of the different drugs being thrown my way, I never knew what to expect.
Once I lay down, the pain became unbearable. So during the day I kept moving as much as possible. With the kids around, I didn’t have much of a choice—I wanted to play with them, and they wanted to play with me, so I just sucked it up and got through it, day by day. Plus, to be honest, I was too obsessive about things like toys all over the floor to watch them pile up. I was definitely slower at everything, though.
Only two other things were helping me get through Taxol. The first was exercise. It strengthened and stretched my muscles, which seemed to ease the pain, and it also tired me out so that by bedtime I could fall asleep. When most people cursed a heavy snowfall, I welcomed blizzard-like conditions: powering through the drifts exhausted me even more. Some nights, before bedtime, I’d get out our old wooden sled and take the kids for rides around and around the block. They loved it, invariably screaming, “Again, again!” each time we neared our driveway.
The second thing that helped was yoga, which I had recently rediscovered in a desperate attempt to help with sleep and found incre
dibly relaxing. There were times when I didn’t feel like exercising—ironically, I felt too tired to work out so I could fall asleep—and I always had a million things on my mind (the dishes in the sink, the laundry in the dryer, the toys on the floor—everything else that I felt “needed” to be done), but the prospect of being able to sleep was great motivation.
All that wasn’t enough. Never in my life had I felt that kind of pain, and never in my life had there not been some sort of medication to get rid of it. Desperate, I turned to Dr. Julia once again.
“Take L-glutamine,” she said. “It will help prevent neuropathy, which is the tingling and numbness you’ve been feeling, and will protect your gastrointestinal tract from the effects of the chemotherapy drugs.”
I bought some right away. The supplement did seem to take the edge off the achiness, so I decided to keep taking it for the rest of the treatments. I let my oncologist know, and she was okay with it. Frantic at night, though, I sprayed topical muscle relaxant onto my calves and feet, hoping to numb them, but that was pointless. Sleeping pills were useless. There were three more treatments left, and I was resigned to the fact that the first week after each treatment, no matter how much exercise or yoga I did or what drugs or supplements I took, would remain very uncomfortable.
I took a deep breath and shook my shoulders to relax them. No problem! I told myself. I’ve already come this far. What will three more treatments take? Besides, with the number of appointments filling my calendar, time will fly by. Before I know it, chemotherapy will be over. But even as I thought that, I could feel myself tensing up again. I knew that the end couldn’t come soon enough.
Part Four
WILL I MAKE IT?
Chapter 24
DISTRACTION
Charley and Rudy were handling the whole cancer thing beautifully. In fact, they were handling it so well that the fact that I had cancer wasn’t stopping them from doing anything. It was nice to have at least two people in my life who didn’t look at me with pity. On the other hand, since they had no pity, they didn’t treat me with any special consideration at all.
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