mardi, novembre 22, 2016

the good that's in us and the good we do will outlive us

This story is heartbreakingly beautiful. Christine Ennis, mom of 3 young daughters, including an infant, is nearing the end of her life due to Stage 4 breast cancer.

"The good that’s in us and the good that we do will outlive us." - Fred Dickey
Mother of three making peace with cancer and death
By Fred Dickey
November 18, 2016, 9:55 AM

I don’t want to write this. I really don’t.

But sometimes you have to swallow hard and do your job, because stories of courage and great decency are so infrequent that to ignore one would betray the journalist’s duty.


Such a story is Christie Ennis.

Christie has Stage 4 breast cancer. I first met and wrote about her last December. At that time, she was battling her disease while eight months pregnant. She impressed me, and a great many others, with her gentleness, strength and affection for everyone. That has not changed. But neither has the cancer, except to get worse.

Christie, 36, her husband, John, and their three daughters live in a small rental home in Clairemont. John works long hours in the restaurant business. He also watches over the kids and does homemaking chores after sleeping for a few hours.

Christie is a pretty woman. A bald head, a body bloated with water and eyes misted with pain and sorrow don’t obscure that.

She is also a lovely woman, but that emanates from who she is, not how she looks.

She is also a brave woman, and you will see why.

*

I walk into the living room where Christie is curled into a chair with a blanket around her legs. She looks up and smiles broadly and greets me with an outstretched hand.

It’s also present and evident, that damned disease, but she makes it unimportant, just for a moment.

I ask, lamely, how she’s doing.

She knows exactly what I mean, but does not falter. “My cancer has been growing,” she says. The smile weakens but doesn’t leave her lips, because she’s reluctant to spread her grief to someone else.

“We found out last week that it spread to my skull, and through my arms and ribs and pelvis and sternum and legs. It's everywhere. It's in my liver. It's done quite a number on the liver — consumed the right lobe, then affected the spleen, which causes more pain.

“That's all happening right now. It's very difficult because (the doctors’) hope is to keep me alive. Once you're terminally ill, it's very hard.”

John, standing nearby, says: “The conversation with the doctors is more about easing pain and making her comfortable. There's not a whole lot of talk about remission anymore.”

She says, “My tumor markers recently exceeded the maximum measurement, and after that, they stopped counting. I started to feel abdominal pain and have some swelling. I got a fever and I got bad delirium.”

Consequently, she has been put back on chemotherapy, her third session. The chemical is Taxol, and it is very potent. It is injected through a port in her chest. She says it seems to be stopping tumor growth, but no one knows for how long.

“Taxol is supposed to be great. They just have to find the balance for your body. At first, it was really strong. Too strong, like it-almost-killed-me strong.

“It left me writhing on the floor like death. I went to the hospital in an ambulance. People thought I was dying. The dosage had been way too high and it caused terrible side effects.”

John says, “When that happened, I thought we’d lost her.”

What are the side effects?

She looks into the distance, searching for the proper awful words. “It’s crippling. The edema. The sores all through your (gastrointestinal) tract. They start in your mouth, really gross, scabby things that go all the way down. It affects everything … the exhaustion … the neuropathy ...”

Normal cells are orderly and know their place and purpose. Cancer cells, for reasons mainly known only to them, are ones that go crazy and repeatedly replicate and spread. They take over and disrupt the body’s ability to function, and when allowed to run wild, will kill. Microscopic Frankensteins.

Taxol is a chemo drug whose purpose is to destroy those outlaw cancer cells by making them forget how to reproduce. Sometimes it works, often it doesn’t. It also plays hell with normal cells.

However, people who have Taxol injected into them to the extent of Christie are transported to a medieval dungeon where the side effects mimic the rack and iron maiden. If one were to make a list of side effects, the column would carry forward to a second page.

As we talk, daughter Vivian flits around the room, busying herself with 2-year-old things. Grace, 10 months old, sits on the floor nearby, probably strategizing about those first steps she’ll soon embark on. Alana, 6, is at school.

Christie’s lips quiver and her eyes mist. “I don't want to cry, but (chemotherapy is) really much harder this time. I’m having a really hard time.

“It’s dark, very dark, really dark. It's a very awful place to be because you're all alone.

“The weakness. I can't even hold my baby. I can't physically pick her up. That makes me really sad. Somebody else has to do the things that I should be doing for her, like putting her in her high chair or giving her a bath.”

From your tone, I sense you feel guilty.

“Oh, I feel terribly guilty, and I feel helpless. I feel very sad. That's my world. That's my purpose. Raising my children is what I do, but now I can't do that. It resonates from such a deep chord that you can't take care of your own little cubs. It's very sad.”

She looks at Grace playing at her feet. “I can't pick her up when she's crying. It's really very tough. That's the part I mean about being alone. It's also tough on John.”

Her voice is sad but matter-of-fact as she talks about something that’s normal in her situation, but rarely spoken of.

“Oh, it's got to be really tough on him. It's really hard on us at this time. I feel like we're so divided.”

How do you mean?

“Now, he needs to be wrapped up in his job. He works so hard and tries to take care of the kids because I can't. I feel like he's angry, mainly at the disease, maybe even at me a little, which I know is normal. He’s very loving and supportive, but there's not any talking or friendship or the kind of stuff that happened before, that united-ness.”

She accepts my offered handkerchief.

“Thank you.” A short laugh that she doesn’t feel. “It’s better than my sleeve.” **

John talks about the difficulties of making do and getting by in their time of trial. He has a manager’s job at a new pricey steakhouse, and he works as a server at banquets part-time to pay their hefty bills. They have just met their $12,000 out-of-pocket insurance quota, but have found it necessary to employ a full-time nanny.

“Every month, it’s skating on thin ice,” he says of the financial burden.

Even so, the family has started a college fund for the girls, although thus far it’s filled only with good intentions. Both Christie and John are college graduates and want the same opportunity for their daughters.

Christie enjoyed a career working worldwide in the hospitality industry.

Through it all, she retained her Catholic roots and recently adopted a parish in La Jolla called Mary, Star of the Sea.

When you say, "Why me, God?" what comes back to you?

“I don't say ‘Why me, God?’ I just pray for peace, for courage, for strength, and to just keep going.”

I’m amazed at the number of people who care about you, who follow you on Facebook.

“Oh my goodness, it's so overwhelming in the most beautiful way. The prayers and the thoughts and the love that people are sharing … my goodness, all that kindness,” she says in wonder.

*

John and Christie had settled into what she calls a “solemn partnership” in lieu of marriage, but last summer on a Hawaii vacation, John proposed.

“He said he understood what the road ahead looked like, but that he wanted to be there through everything. He was on one knee by a waterfall. He was fumbling in his backpack and pulled out a beautiful ruby ring. He was so cute. I cried.”

Six weeks ago, John and Christie had a formal wedding in New Jersey. The whole family was there to celebrate with them.

But when she returned, the cancer was waiting — angrily.

*

Describe the pain, Christie.

“The pain is the worst because it's just such a physical reminder of what you're going through. It's excruciating: sharp and stabbing and dull and achy and sore.

Can you eat OK?

“Yes, give me a big pizza. But I can't eat what I want because there's no space because of the edema. Everything is so swollen, my stomach is so tiny, but I want to eat that whole pizza pie. My appetite is there. Just the ability to eat is hindered.”

Christie does not shy away from straight talk, but this is the question I don’t want to ask: At what point do you say, “No more”?

“It’s really tough. I sometimes think with my life reduced to this, like laying under a blanket ...That’s not a way to live. I know it’s very controversial ...”

What’s controversial?

Her gaze does not leave my face. “California is a right-to-die state. It's something I consider, because I don't …” Christie’s eyes fill at the unfinished thought. “The idea of death is sad for me because I don't want to leave my children, my husband, my family, but I'm at peace with it. It’s OK.

“But being consumed, turned into mush by this spreading thing. It's not something I want anyone to witness. I don't want to have to go through it.”

Speaking those bleak words is tiring, and her voice softens. “It's exhausting, but you just …The option is to lay down, literally lay down and die, but I’m not there yet.”

How would you like people to think of you?

The change of subject momentarily lightens her spirit, perhaps by thinking of friends.

“Wow. I would like them to think of me as positive and loving and kind. However, with the pain, sometimes it's impossible to be a nice human, and I’m not at my best.”

What do you want for the girls?

“I want them to just feel such love and have a solid support system. I want for them to be well-rounded, well-mannered, and good humans. They have to be good humans. They better not go out there and reflect poorly on me.”

Discussing the girls in a future that does not include her is a stab in her heart.

“I really want to get so much better because I ...” She pauses to dab her eyes. “You normally don’t see me cry very much, but I'm a crier these days. I just want to get up and walk around. The things that you take for granted, oh my goodness, the things you take for granted.

“I don’t sleep with John in the same bed. Our bed is physically too high, and so I’ve been sleeping in this front room where the bed is very low … Just things that you miss. Sharing that space with someone.”

John comes in and reminds us that the time nears for Christie to get ready to go to the hospital for her next chemo session. I suggest we stop and start packing up.

Her smile widens and she says, “Yes, please. Let's stop on a note where I'm not crying.”

**

Cancer is serendipitous. Willful. It can confound oncologists and let its victim survive for years. Or it might shock them by a sudden plunge to the death. But if the affliction is severe enough, it will eventually get to where it’s going.

If cancer doesn’t allow Christie to see her girls grow, loved ones won’t forget how she reached out through the pain and touched them when she could no longer hold them. How she cried at the buds she would not see bloom. And how her soul ached not to leave them.

It’s wisely said that the good that’s in us and the good that we do will outlive us. In years to come, Christie’s daughters will look at the picture on the mantle and ask, “Tell me again what my mother was like?” And the words will glow, and Christie will live.

Fred Dickey’s home page is freddickey.net. He believes every life is an adventure and welcomes ideas at freddickey1@gmail.com.

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