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Provided by the patients, their friends, families, and caregivers of those diagnaosed with lung cancer, these very personal stories offer inspired insight into the ways families and professionals care for both themselves and the patient, gain a deeper understanding of the relationships, and learn to come to terms with the end of life. Included are essays by medical experts about the science of lung cancer, current treatments, choosing the right doctors, and what the future holds for the next generation of ...
Provided by the patients, their friends, families, and caregivers of those diagnaosed with lung cancer, these very personal stories offer inspired insight into the ways families and professionals care for both themselves and the patient, gain a deeper understanding of the relationships, and learn to come to terms with the end of life. Included are essays by medical experts about the science of lung cancer, current treatments, choosing the right doctors, and what the future holds for the next generation of patients.
* * *
I get it. No, I really get it. It took almost three years and a bout of breast cancer, but I now understand my mother-in-law, Julie.
I always thought that my husband, Eric, had married the exact opposite of his mother. Julie raised two children and never sat still. Her days were filled with charitable committee meetings, church activities, and Jazzercise; my days were filled with work meetings, church on Saturday nights and dog walks. Julie kept her petite figure by eating nothing but fruits and vegetables and low-fat foods; I believe eating pizza every day covers all the food groups. She raised her kids to eat healthy and stay active; I feed her son Lucky Charms for breakfast. She dressed like she could grace the cover of a fashion magazine, accessorizing with imaginative southwestern jewelry or scarves; I live in blue jeans and turtlenecks and have been known to show up at work with no earrings and two different colored socks. Yup, we were as different as night and day.
Eric and I had been married for about a year and had just spent the holidays with Julie and Bob, Eric's dad. Julie was vibrant and healthy, but had a touch of laryngitis, which she laughed off as being due to too much talking. She'd been hoarse for a month, andafter a day of skiing decided she should probably go to the doctor. Then came her phone call. I instantly knew something was wrong. When I answered the phone there was no small talk, Julie wanted to talk to Eric right away. The doctor had taken a chest X-ray and made a grim discovery. She had lung cancer. Eric held the phone to his chest and silently cried.
Shocked and wanting to be involved as much as possible, Eric and I drove from Denver to Santa Fe and went to see the doctor with Julie and Bob. I felt like an outsider at the oncologist's office-my family dies of heart attacks and strokes. How does one handle cancer? When the doctor told us that the cancer was inoperable and had been found outside of her lungs, Bob, Julie, and Eric knew what that meant. Julie's sister had died of lung cancer a few years earlier.
From that day, I never heard Julie complain about having lung cancer. (She did complain about wearing a wig that made her head itch, and about having so many doctor appointments.) When her chemo schedule permitted, she kept going to her committee meetings and when she was feeling strong enough, Jazzercise. She loved being around people and keeping busy. She rarely varied her routine. Julie stayed up all hours of the night, as if she had to squeeze thirty hours into every twenty-four. Eric and I were puzzled. We wanted Julie to spend more time with her grandchildren and frankly, with us. Instead, Julie planned the yearly garage sale fundraiser for her pet charity, American Association of University Women. We tried to visit her once a month, but it always seemed like she was busy; I felt as if we were interrupting her schedule. But she always made sure her plans never interfered with our visits.
Julie was very resilient. She made it through chemotherapy. She made it through radiation treatments when the cancer went to her brain. Julie then volunteered to take part in a clinical trial for the new drug Iressa, which gave her six months of Indian summer: remission. Then, two and a half years after her initial diagnosis, the cancer was back with a vengeance. Bob was devastated when he had to call hospice.
Eric and I spent two weeks with Julie while she was under hospice care at home. There were times when she wasn't lucid. Other times, she was the old Julie, trying to organize and plan. Julie was worried she was putting everyone out and, of all things, that she had bad breath. It was during one of her lucid times that she insisted Eric and I take a few days and go on a long-planned vacation. I thought she was nuts but she insisted. Not wanting to upset her, we tearfully said what we believed would be our last goodbyes and left for two days. We were nervous wrecks, calling and checking on her several times a day, racked with guilt, afraid we wouldn't be there when she and Bob needed us.
During our return to Santa Fe, Julie had slipped into a coma. We were told the end was near. I was sitting with her, holding her hand, telling her about the Indian ruins we'd visited and how we wished she had been with us. Her breathing became erratic. I ran and got Bob, Eric, and Julie's sister, Francie. We were gathered around her, touching her and telling her how much we loved her when Julie took a rasping breath and was gone.
I always wondered why Julie was so determined to maintain her schedule and to make sure that everyone maintained theirs. In a way, I felt like we'd been gypped out of spending more time with her. Try as I might, I couldn't understand it.
Fast forward three years. Eric and I were sitting in a $2 movie theater watching the Johnny Depp movie Finding Neverland. During one scene near the end of the movie, the mother insists that her kids go to a play, even though she was dying. Throughout the movie, she tried to make sure that everything was as routine as possible for her kids, trying to shield them from her suffering. Her death scene so reminded Eric and me of Julie's death that we both started to cry uncontrollably. And then, a light bulb dimly flickered to life in my mind, a hint of a thought.
A few months later, I had my own shocking phone call. I was diagnosed with DCIS, ductal carcinoma in situ, an early stage of breast cancer. I had bilateral lumpectomies and four lymph nodes removed, followed by five weeks of radiation treatments. While my prognosis is totally positive, I discovered that cancer is all-consuming. Cancer swallowed my life, and then spit it out and I'm still trying to clean up the mess.
During my recovery, I was fanatical in proving to myself that I wasn't any different, that I could still handle my usual routine. Three days after my surgery, I cleaned out the refrigerator. Six days after surgery, I went on a two mile hike. The next day, I went on an annual elk hunt with my father and hiked five miles before driving four hours back to Denver. (I don't carry a gun; I take scenery photographs.) I wasn't going to let a little thing like breast cancer make me cancel a 21-year family tradition!
Every day I worked full-time. Every day I did physical therapy so I could raise my arm. (I had lymphedema, which made it difficult for me to use my left arm.) Although it was embarrassing to be caught by co-workers standing in the bathroom looking like the Statue of Liberty trying to stretch out my arm, I kept telling myself I'd be back to normal soon, to hang in there, to keep a positive attitude.
Normalcy: that was what I craved. I wanted to be able to exercise like I used to. I wanted to be able to close my car door with my left arm. I wanted my husband to give me a chest massage because I'm sexy, not because he needed to break up my scar tissue. I didn't want to be labeled a breast cancer survivor, but just a normal person doing normal everyday things. Then, the dim light bulb in my brain that had flickered on at the movies started to shine at 100 watts. Normalcy: that was exactly what Julie had coveted. She just wanted to be a normal person, not someone dying from lung cancer. Suddenly, Julie's behavior made perfect sense.
I guess we weren't so different after all.
* * *
No one ever sent me the memo about what to do when you are sandwiched beside your mother in a tiny, pungent doctor's office, waiting to hear why there happened to be a shadow on her X-ray and a liter of fluid in her lungs. There was no note that told me what to say after her longtime physician popped in and informed my sixty-nine year-old mom that the reason for all her complications was that she had lung cancer, complete with a hefty, inoperable tumor inside the left lobe.
The long haired, blonde, blue-eyed doctor informed us that even though mom had quit smoking ten years ago, she now had a specific mumbo-jumbo type of cancer that looked to be Stage IV.
I recall asking the woman in white before us what the hell Stage IV meant. She hesitated. I piped in, "Wouldn't Stage I be the worst?"
No? Oh. Nevertheless, isn't there a Stage V for those who are really bad?
We were told that Stage IV covers that dire scenario just fine. I don't remember what I said after that, but I do remember feeling remarkably distant and nauseated. I remember the beauty queen with a stethoscope prescribing Ativan for Mom and handing me a referral for a cancer specialist. What was the point in seeing a specialist if there wasn't anything that could be done? I wanted to ask, but I didn't. I recall wanting to ask the doctor if her mom was alive and well.
That maddeningly sunny September afternoon, as I drove home the person who had raised me, I kept thinking that this wasn't fair-for me. I'd already lost a parent, and right now I desperately wanted my dad. No such luck: he'd died of a heart attack fifteen years earlier.
"I miss your father," Mom said, tears spilling over. I couldn't reply; my throat closed. "I'm so lucky I have you," she added with a smile.
Lucky to have me? The person who has somehow found a way to feel sorry for herself at your terminal diagnosis?
That was the beginning of many thoughts and feelings that would humble and sadden me. Mom was smiling. I couldn't smile. I could barely drive. How could she smile? She not only could, she smiled every day throughout the next fourteen months.
I, however, undertook the drama side of it all. When I was apart from Mom, I'm ashamed to say I often cried, screamed and wailed at the unfairness of my life. I had friends and relatives who not only still had their moms around-in great health-but their fathers too. Why did they get to have both their parents while I would soon have neither?
How atrocious was I? Was I secretly wishing that they would lose a parent? Would that make my loss easier? Would that make everything "fair?" My Lord, what was my mother's cancer diagnosis doing to me?
The compassion within me slipped into high gear to help my mother prolong and enjoy what was left of her life. But I was completely spent when out of her sight. I cringe at my selfishness throughout much of Mom's cancer experience. I helped her keep up with shopping and cleaning and took her to her doctor appointments and chemo treatments. I became enraged at my siblings for not pitching in more. I used guilt tactics-whatever I could-to reach them. I wanted someone to help me help Mom. I wanted them to worry about her, wipe her face after she vomited and get angry like I did when she would let herself suffer by not taking her pain pills.
Now that I look back, I think my siblings were afraid to tip the boat. After all, I had everything under control, right? I became very knowledgeable about Mom's treatment and what she needed as far as pills and other cancer-related issues. Believe me, I let my brother and sisters know it.
The truth is, Mom and I had always been close. We did most of our grocery and clothes shopping together. We held word game tournaments. We baked cookies. But I hated when she'd meander into a shoe store-which was a given if there was one within sight. She'd pick up a sandal, a pump and a boot and then ask the salesman if they all came in narrow and I'd stand behind her, tapping my foot impatiently. She also had a way of cajoling me into playing Scrabble with her when I should have been working on my feature story for the paper, and rubbing it in when she won.
As the months edged by, the shopping sessions decreased and then stopped altogether. I was out alone now, picking up her necessities and passing right by the shoe store. Then came the time she could only make it out of the house to go to church ... and then not even for that. It was at this point when the Scrabble game started collecting dust.
Finally, when she lay in my son's bedroom, atop a hospice bed, the purple tide creeping within her fingers and toes, she continued to fight and moan in pain. She was given more morphine, and she still had more pain. Finally her breathing liquefied and she called for me from down the hall.
I walked in and stood by her side. I'd think that each breath would be her last, but over and over, another breath followed. Minute after minute, she clutched life and the pain that it contained. I was in agony seeing her agony. She hadn't been cognizant for hours. She took another bubbling breath and then another. I didn't know if she could hear or understand me, but I leaned down and whispered into her ear: "Mom, your pain is killing me."
She then did something that must have taken phenomenal strength. She clenched her mouth shut, refusing to take those breaths that a body automatically clings to, even in the throes of death. Before I could realize what I'd done, she was gone. She had gone to save me more agony.
I think that if I had gotten that memo-the one to tell me what to do to help a loved one through their terminal cancer diagnosis- it would have done me good if it had said, do what's right. Don't ask why others are or aren't doing this, or what's fair. If others want to help you, let them. If they aren't able to, for whatever reason, don't allow this to tarnish your relationship with them or their relationship with the person who has cancer. Be honest about what terminal means. It is excruciating, but don't allow yourself to believe you will have plenty of time later to be a good person. Be as good a person as you can be now. That doesn't mean perfect. It won't happen. Just be your best. That means be there for them.
Yes, you will become agitated and exhausted and frightened, but you will also have the chance to make their days, and what remains of your own life, better. Don't be condescending. Keep humor, compassion and your basic relationship intact. If you don't do this, your conscience will remind you about it over and over until your own time comes to pass.
Shut your mouth and open your heart as you drive them to the shoe store and don't complain about how boring it is and how long they're taking looking for that darn size 7-1/2, narrow loafer. Above all, play Scrabble every single day and rub it in when you win.
Excerpted from Voices of Lung Cancer Copyright © 2007 by LaChance Publishing, LLC. Excerpted by permission.
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