6.24.2011

The Long Goodbye

Four years ago, I sat in a small doctor's office in North Phoenix and listened as my mother's pulmonologist explained to my mother why she was coming down with a persistent cold every few weeks. "Unfortunately, it is cancer," she said. Although she was not a cancer specialist, she estimated my mother was at stage 3B or 4, but that an oncologist would be able to make that determination following additional tests.

She was 63 years old. Earlier that week, during a week of otherwise good health, she'd completed her normal 10-mile bike ride and attended fitness classes at her community's recreation center. This woman had advanced cancer? It seemed unreasonable.

Over the next several weeks, she wavered through treatment plans, including none, holistic, and traditional, finally deciding to go chemo and radiation first. The chemo treatments--demanding 8-hour affairs that required she lay in a recliner covered in blankets while various chemicals dripped into her body through an IV--initially took a huge toll on her. This was the only time I remember her balking at her predicament. "The cure is worse than the disease," she said, her body riddled with stabbing pains.

Fortunately, the treatments began to be less and less difficult, and eventually, she recovered and went back to exercising after just a few days. Throughout her years fighting back, she made fitness her top priority, eating well and doing plenty of aerobics with her core group of "fitness buddies." She golfed, she spent time with her friends, she laughed often. She loved being alive.

She made astounding progress. Initially, her tumors shrank a staggering amount. Doctors, who initially gave her 6 to 9 months, were cautiously optimistic as they moved her to a care plan that would help her maintain her level of health while preventing a backslide. The first pill regimen she was on was great--but gave her bloody noses, mouth sores, and difficulty swallowing. She took it in stride but eventually managed to get into a cancer drug trial.

The drug trial was really effective...but again, had strange side effects. She reluctantly stopped the trial and waited for a new one to open up for her. In the meantime, she was again suffering from a nagging recurring cold...that morphed into pneumonia...that caused a fluid build up in her lungs...that caused her lung to collapse. She went to the emergency room and spent several days in intensive care getting help. This was three and a half years into her fight. A doctor looked over her chart and said, "Maria, I think you only have 6 to 9 months to live." She'd heard it so much by then it didn't even register.

But in the hospital, the drugs they gave her to fight the pneumonia ended up giving her an infection called C-Def, which attacks the intestines and, left untreated, is fatal. A large number of patients who contract this do not survive. But at this point, it was clear my mom was not a typical patient. She took on the treatment program, which caused bouts of debilitating nausea while she suffered from constant digestive problems, and eventually, several weeks later, came out the other side and was cleared by her doctors.

But the pneumonia et al had taken its toll on her body and health. She was done almost 40 pounds from her normal weight and she'd gone several months without cancer treatment. We all knew in the meantime her tumors were growing but we were hopeful she'd get accepted into another drug trial this year. And then, she was. On Tuesday of this week, we took her--weak, but resolved to give it a try--for one more chemo treatment to see if she could tolerate another course of treatment.

It went excellent--she had almost no side effects from the chemo. We think, though, that sometime Wednesday she suffered a mild stroke. For the last 24 hours, she was a little confused about when and where she was, had difficulty speaking clearly, lost the ability to walk and feed herself, and then faded into exhaustion.

By this point, my mother had outlived 95% of the patients who receive the same diagnosis.

We had every hope that her symptoms, which we initially chalked up to sleep deprivation and the chemo, would abate and she would bounce back as she always did. Throughout everything, I expected her to recover. Not just to recover, but to thrive. She was that tough. She meant business! By Thursday afternoon, we began to fear the worst and gathered around her in the living room, holding her hand, talking with her, comforting her.

Even as she receded, the core parts of her were still there. If she burped, she politely excused herself. When I complimented her and said, "You're going great, Mom," she smiled and said, "Thank you." And, as she always had my entire life, she raised a hand to her forehead to comb her bangs away with her fingers.

Her mind bounced around for a few hours. Her eyes would glaze over but then become suddenly alert. "I love you guys," she said, her voice slurred by upbeat. "Is this my wedding day?" she asked later, confused. "Your glasses are really in right now," she told me kindly. After some quiet time passed, she told us, "I'm 12 years old," and then "people lie to me a lot--grown up people." (It was when she was 12 her family emigrated from Belgium, initially telling her they were merely taking a vacation.) She moved back further and further until we couldn't reach her anymore, and then we were fortunate enough to get her to Hospice of the Valley, where the staff worked with us to keep her comfortable and provided us with a lot of emotional support.

This morning, my dad called and woke me to say the nurses felt the end was near. I made it to her bedside, where my dad, brother, and I called our immediate family so they could speak to her before she passed. The ending came so quickly. It was too late and too soon. We wanted more time. We wanted more health. We wanted to know she was safe.

We sat in the room with her for a long time afterward. After a while a low flying plane, its engines sighing loudly, broke that silence.

You can read about my mom's experience in her own words by reading her blog.

Thank you to everyone who sent their wishes and thought of us today--we are grateful for your love and support.

10 comments:

  1. Thank you for sharing this, Charlie. Your mom sounds like she was amazing. Thinking of you and wishing you solace...

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  2. Charlie, she is safe. And she passed surrounded by love. Blessings to you and your family.

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  3. Charlie, you always have my love and support. How hard and long the road is, but how very beautiful you were together. Thank you for sharing these loving words.

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  4. I liken losing one’s parent to crossing a river; one that you never imagined you would have to cross. Upon reaching the other side, you are no longer the person you were when you set out. It is strangely surreal to be ripped in half and spilled on the floor. Death is like having a seam tear open in the middle of your chest. And you cannot sew it shut, ever. And as much as each person who cares for you wants to offer you solace and grace and kindness and chocolate, we cannot mend what is broken. Words seem hollow, common. They are not big enough to hold the experience. All we can offer is a shoulder, if you need it.

    Thanks for sharing this, Charlie. I will light a candle for your beautiful mother. Love to you and Beau and your family. I am thinking of all of you tonight. – Shavawn

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  5. My heart goes out to you, Charlie. May the blessing of having had her comfort you through the unimaginable pain of her loss.

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  6. Charlie, thank you for sharing this. She sounds like an amazing woman. You and your family are in my thoughts. And I wish there was something I could say to take away your pain. I'm so so sorry for your loss. xo

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  7. So sorry to hear this, Charlie. Your story of your mother here illustrates that she was quite a heroine.

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  8. Oh, Charlie, so sorry to hear this. You are and yours are in my thoughts.

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  9. Dear Charlie, so so sorry to hear this about your mother. Although words are not enough to mend such a huge loss; My heart, peace, and comfort may be with you dear teacher and all your family.

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  10. So, so sorry to hear about your mom. Thinking of you and your dad.

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