Caregiver of the Year Award Winner: Pamela Welky Paul, Studio City, Calif.

Brooks

Care recipient: Brooks, Pam’s 18-year-old son who has cancer

Nominated by: Lynda Kerwin, a colleague of Pam’s (Read the nominating letter.)

In her words:
When I feel stressed, I: When I feel stressed I force myself to take a nap. This usually occurs between 1 and 3 p.m. If my son has a friend over, all the better. If he’s alone, I’ll lie beside him and doze. I attribute most of my physical strength during this difficult time to sleeping in the afternoon, especially if I had an interrupted night’s sleep due to the following: I walk in my sleep, talk in my sleep, clean out my closet in my sleep. I have a recurring dream that if I find a certain box with latches on it, my son’s cancer will go away. So far I haven’t found that box.

My current challenge is: I fight obsessing over the outcome of my son’s diagnosis. Many times dark moods interfere with my usual sunny disposition. If I let them, these thoughts will easily overcome every minute of the day. It is definitely easier, this allowing myself to sink into the depths of despair and misery. Plus, it forces someone else to take over for me. Herein lies the struggle: Do I really want that?

When I have an extra five minutes, I: Call my eighty-year-old mother in Wisconsin just to hear her thank me for staying strong for her grandson. And I call her ‘mommy’.

My mantra is: “It is a privilege being Brooks’ mom. And no matter what happens to Brooks today, it’s a privilege to be here for him.”

Recommended reading: “Leave It To God” by Christian D. Larson (non-denominational). “The Book Of Positive Quotations” by John Cook. Humor articles. The newspaper. (Sometimes there are stories sadder than mine…) I do NOT Google medical articles. I don’t say this is right, but I feel it is best for the caregiver. I cannot give of myself and cure cancer at the same time. If I do Internet searches at all, it is ‘false positives’ or ‘medication side effects’. I labor over finding out what, besides cancer, a certain symptom could be in order to assuage my son. He thinks every pain is a new tumor.

The legacy I would leave to another family caregiver is: My advice would be to take each day as a separate unit. Try not to look to far ahead and do not go into the past. I kept the phone off the hook and my cell phone on mute most days and in the initial throes of the diagnoses especially. There are people that like drama and they will drain you. If you tell the same story ten times a day, it magnifies. What feels good at first begins to sap you.

I preferred to keep people updated via mass e-mails. My buddy list started at ten and grew to several hundred. I stated everything the way I wanted to and kept a nice boundary that way. If people wrote me back, it was comforting. I could ask for what I needed and people responded quickly. People really care, you’d be surprised who came out of the woodwork. And yet, others surprised me with their detachment. Relatives, for instance. Oh well.

I learned a lot about myself and my family, integrity and strength, and who was capable of what rather quickly. I learned the most about myself.

My 2010 goal is: To honor my son and God’s plan for him. It has taken me four years to wrap my brain around the reason or purpose for this child of mine to suffer so. Friends encouraging words fall on deaf ears. Sometimes we just must have a compartment in our brain for ‘things that have no explanation.” Letting go of the outcome sounds New Age and it is, but it is the only way I’ve found to work. It works best for me.

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(Editor’s Note: So she could continue to focus her full attention on Brooks’ care needs, Pam asked that we conduct our interview for this article via email; our questions to her and her answers follow.)

Caregiving.com: Tell us about Brooks.
Pam: Brooks was a vibrant healthy boy until diagnosed at age 15 with osteosarcoma in his left tibia. Three months before diagnosis, he marched 6.5 miles in the Tournament of Roses parade, playing the mellophone (French horn). He had his leg amputated above knee in 2006 and has endured three lung surgeries (radiofrequency ablation, thoracotomy, sternotomy), proton therapy to the base of skull, gamma knife to the base of skull and 5 weeks radiation to the spine. Lesions have just been discovered on his pelvis after a normal MRI two months ago.

Caregiving.com: Tell us about your family.
Pam: My son, Jon Connor, is 15 and plays saxophone and clarinet. He marches in marching band and is in jazz band. Unfortunately, he is collateral damage. A happy boy, he still walks with a bounce in his step and whistles happily. His school work suffers, but the school knows our plight and has been most helpful.

We have a mutt of a dog, Rottweiler/Doberman mix, who got her toe caught in the leg of an end table and had to have it amputated last month. The fun never ends around here. We also have a 25-pound cat who snores.

Caregiving.com: Tell us about a worry.
Pam: I worry more about my son suffering than about his dying. Maybe I’m naive. A mother can’t bear to see her first born child in such pain. The child who got a perfect math score on his SAT can now barely see, the kid who plays six musical instruments can’t hear out of one ear and can’t toot a horn due to diminished lung capacity. The boy who, at age two, pulled his stool up to grandma’s stove, pounded on it with his fist and said, “You cook, I eat!” can only swallow soup and malteds now. The teen who didn’t let a prosthetic leg hold him back and who dressed as a peg-leg pirate at Halloween and continued to march at football games on an artificial leg has just found out the cancer has metastasized. to his sound leg.

Caregiving.com: Tell us about a blessing.
Pam: Our support group has kept us in food and groceries. They plant flowers by my front porch and put Christmas lights up outside to surprise us. My flight attendant friends at Delta have donated paid vacation days and have afforded me a full 2.5 months off. Brooks’ friends appear at all hours and sit with him and jam with him on the piano. His girlfriend reads with him and toys with him and makes him feel one hundred per cent whole. I cannot express the maturity of his social group. No one has deserted him. His a capella singing group, the  UCLA Scattertones, wants him to sing on their new CD. Their video greeting via YouTube, a gorgeous rendition of  “Let It Be,”  put me over the moon. This generation is terrific.

Caregiving.com: Tell us about a bad day.
Pam: It’s too horrifying to recount. Brooks wouldn’t want me to relay any information about him that might diminish him in any way. He still sees himself as a strong and vital man, although he’s falling into depression now. You see, his beauty and talent defined him. That’s what eighteen-year olds do! He has been thrust into a world of baldness, chronic nausea, wheelchair confinement and severe pain. For a mother to witness this and have no control is unimaginable. He is my friend and my future. He asks if I am giving up on him. Do my eyes show something that my words belie?

Caregiving.com: Tell us about a good day.
Pam: His good days are days when he is flanked by his buddies on the couch. They watch movies together on one big screen while playing separate video games on their individual laptops. What? They talk and eat at the same time. They laugh at stupid jokes. They ignore each other and socialize with each other all at the same time. Brooks loves going to UCLA, joining the buzz and energy of intellectuals such as himself. A normal scan is a good day. A check in the mail. Mostly, his girlfriend, Gio’s, head on his chest.

Caregiving.com: Tell us about yourself.
Pam: I am a 52-year-old white female, divorced. Had kids late, after 9 years of marriage. I am a flight attendant for Delta Airlines since 1977. I don’t date, don’t exercise, don’t watch television. But I am not a martyr. I have maintained my job and my dignity, have kept a roof over my children’s heads and keep a semi-clean house. I remember to change the filter in the air conditioner occasionally and owe all of my organizational skills to a massive eraser board in the kitchen. Monday, Tuesday, Wednesday, etc. My refrigerator, however, has fuzz growing on the outside.

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To learn more about Pam, read her two essays published by Los Angeles Times:

• A Mother Assesses Risk to Life and Limb

• When Cancer’s the Houseguest, Few Rooms are Truly Safe

Tags: caregiver of the year, pamela welky paul