A special welcome to anyone who is new to The Grieving Room. We meet every Monday evening. Whether your loss is recent or many years ago, whether you have lost a person or a pet, or even if the person you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time) you can come to this diary and process your grieving in whatever way works for you. Share whatever you need to share. We can't solve each other's problems, but we can be a sounding board and a place of connection.
Cancer. The "Big C." Possibly the most dreaded word in the English language.
Since President Nixon declared the War on Cancer back in 1971, we've come a long way in improving detection, prevention, and treatment, but it still remains a formidable enemy. One out of every three of us will get some form of it over the course of our lifetimes, and, of those, one-third will die from its complications within five years. It can take us out when we're already at the end of the line, or it can take us out before we even get started.
Over the past two years, I've had a lot of experience with the "Big C," much more than I ever wanted to have. I've got a lot to share on my mind.
I'm not much of a storyteller, but I'll give it a shot.
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On August 24, 2006, I got home from work and checked my messages. My mother had left two. She sounded anxious. I called her immediately.
Mom had been diagnosed that day with colorectal cancer. She felt that something had been wrong for some time, but her new physician didn't seem to take her concerns seriously. Still, she felt that they caught it early. Routine surgery would be in order. My parents chose a surgeon they knew, from a large hospital in San Diego, and scheduled the surgery for the Monday following Labor Day weekend.
My brother and I spoke on the phone often over the next several days. The five-year survival rates for Stage I colorectal cancer were generally good, about 90 percent, and we were hopeful. On the day of the surgery, we drove down to San Diego and accompanied my parents to the hospital. Mom was nervous, but put up a brave front. In the waiting room, time passed slowly. I had looked through every magazine at least twice. Two, now three hours had passed. What was taking so long?
Finally, the surgeon came into the waiting room. Dad, my brother, and I stood up expectantly. Bad news. The cancer had progressed much further than expected. The tumor had broken through the muscular wall and lymph nodes were involved. Extensive surgery was required, and in the end, there wasn't enough lower intestine left to make a proper resection. Mom would need a permanent colostomy.
Hours later, after Mom had recovered, we visited her in her hospital room. "Did he get it all?" she asked.
"Yes, Mom, he got it all," we answered, knowing that she would be devastated when the drug haze wore off and she learned the truth of her condition.
"Bless him," she said.
Mom's recovery was slow and painful, both physically and emotionally. I had the greatest boss in the world, and he allowed me two days per week to visit Mom at the hospital. I stood in the midst of it all, feeling as obtrusive as a flagpole someone had put up in the living room, while my father and brother took care of things, but I did what I could. I spent several hours per day with Mom, reading to her, adjusting the settings of her hospital bed, alerting the nurses if she needed more assistance than I could offer, or just sitting with her while she slept.
Eventually, she was discharged, and my parents took up temporary residence in a nearby suburb of San Diego so Mom could be closer to her doctors and clinics and Dad could act as her caregiver.
So, Mom's new life began, a life of harsh medications, side effects, arrogant doctors, pain, fear, and uncertainty. It was all very difficult, but she bore it with grace and dignity.
Four months later, like the Luftwaffe curling in for another run on the same South London neighborhood, the cancer bomb struck our family again. And this time, it landed right on me.
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"You have Multiple Myeloma," the apparition in the white lab coat told me. "We can't cure it, but we can treat it."
It was December 21, 2006. I'd been in the hospital for three days. I was dizzy from pain meds and had a temperature of 104. I barely knew which way was up.
Still, my first reaction upon hearing this was relief. Maybe this explained why I had no appetite but was constantly thirsty, why I would fall asleep at 7 PM, and why my bowels had locked up solid, making me afraid to use the bathroom. Maybe this was why my back was wracked by a constant, gnawing pain that kept me awake at night.
The doctors started me on a course of chemotherapy and bone-building drugs. Once my condition was stabilized, I was discharged. Friends and relatives took care of me until I could move in with my parents near San Diego. Mom and I would fight our respective diseases as a team, while Dad took care of both of us.
Since I wasn't working, I had plenty of time to learn about this strange disease that had disrupted my life, and very likely cut it way short.
Multiple Myeloma is a cancer of the bone marrow. Statistically speaking, it is rare, incurable, and universally fatal. Basically, it causes malignant plasma cells to proliferate in the bone marrow. These cells send out a signal to destroy bone. Also, since the marrow is full of cancer cells, it can't make enough antibodies to protect the body from disease or infection. The patient eventually dies of something s/he normally could have fought off. Either that, or s/he becomes "toxic soup" due to all the chemotherapy.
It is also a disease of the elderly, with a median age of 70 at diagnosis. However, it is increasingly being seen in younger patients. I'm one of them. I was 41 when the disease was caught. I was otherwise healthy and in good physical shape. Glad I had good insurance. A lot of us don't.
The more I learned, the worse I felt inside. I envisioned a scarifying decline, in which my bones had turned to powder and I became dependent on others for my every movement, intestinal or otherwise.
I don't want to go out like this, I thought. Not now.
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As the months passed, my condition improved. I had three separate courses of chemotherapy, including a clinical trial. My hair fell out and grew back again. I had surgery to shore up my damaged spine and physical therapy to help me relearn how to walk, sit, and stand properly.
I became more self-sufficient. I drove my own car to my doctors' appointments and ran errands around town. As I did before, I helped my father take care of Mom and pitched in with household chores. I came to accept my new condition and work around my physical limitations. I even got to travel a little and spend time with my friends.
I had an autologous stem cell transplant in October 2007. When that didn't deliver the desired results, I had another last February. I'm still not in remission, but things are under control for now with medication.
In general, I'm doing okay. I hurt sometimes; I'm tired much of the time. I still can't sit or stand for very long. My feet burn from chemo-related neuropathy. But, that's the worst of it. I feel generally good, and I'm planning to return to work before the year is out.
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Meanwhile, the hits just kept on comin'. My uncle, my mother's only brother, was diagnosed with Stage IV lung cancer in the fall of 2007. Small cell carcinoma. By the time you know it's there, it's already too late. I hadn't seen him in 25 years. He led a troubled life and eventually developed addictions to gambling, alcohol, and prescription narcotics. He was very nice to me when I was a kid, though, and I'll never forget that.
Anyway, he opted for surgery over chemo. The surgery was more extensive than anyone expected, and it left him dependent on a respirator. Once it became clear that he would never breathe on his own again, he elected to remove himself from the respirator. He died on November 6, 2007. I dreamt of him that night. He was young and smiling, just as I'd remembered him from my childhood.
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As I got better, Mom got worse. During the summer of 2007, she noticed numbness in her left leg. Was it sciatica? Neuropathy from chemotherapy? Something else? Nobody seemed to know. Over the next few months, my parents consulted a number of doctors, who ordered x-rays and MRIs, but no one had any answers.
Mom's left leg steadily worsened. She eventually developed a drop-foot condition and had to walk with a cane. Her balance suffered; she fell frequently.
It got worse. Shortly after Christmas, she lost the use of her other leg. Finally, another MRI revealed the reason: a large tumor with feelers had enveloped the T10 - T12 vertebrae. It had damaged the nerves and caused the paralysis. The technicians who had administered the previous MRIs had all missed that area. The surgeon who removed the tumor warned us not to expect much in the way of sensitivity or functionality. Mom would never walk again.
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Mom's dying now. She's wearing out. She's been through too much too quickly. Too much surgery, too many drugs, too much bad news. All those pain meds make her too sick to eat or even stay awake much of the time. I dropped everything this past weekend and made the 9-hour drive to see her and the rest of the family. I felt I had to be there.
That might be me someday, maybe in two years, maybe in 10 years. Hopefully, they'll find a cure before then. I try not to think too much about it. I try to stay positive.
I recall a conversation Mom and I had back in the spring of 2007. At the time, Mom was doing well. She told me that she was now confident that she had a future. Back then, I was physically worn down from chemo and mentally overwhelmed by the gravity of my situation. I glumly told her that I was taking things one day at a time.
That's all any of us can do, really.
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I'm usually not one to give unsolicited advice, but I'd like to share what the experiences of the past two years have taught me.
Don't take your loved ones for granted. Spend as much time with them as you can. If any relationships are broken, fix them. If that doesn't work, at least you tried. If anyone gives you grief, just walk away.
And, be good to yourself. Celebrate your successes, even if they're minor, and don't get too down on yourself when you fail. Do something you enjoy every day, no matter how simple. If there's something you really want to do, go for it.
You just never know what's going to happen.
With that, I'll sign off. Sorry I was late with this. Thanks for understanding.
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UPDATE: Thanks, everyone, for the kind words and the support. It helps to talk about this.
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Our upcoming schedule of hosts:
September 8 - filled by Random Factor
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