Her reason for living is the very thing that is killing her. While most people may understand that life is short, Julia Carson knows that each moment she has is precious. She feels it in her body, in her mind, in her soul. She has been fighting brain cancer for seven years.
Every chance she gets to spend with her two boys, Roman, who is 13, and Zev who is 9 years old, is the fuel that keeps her fighting for another day, and cancer drives her to savor each day, she said.
Julia is 35 years old, and she knows that is miraculous.
“Cancer gives you a reason to live. I don’t want to miss a minute of life. If not for my kids, I wouldn’t be doing this.
“I don’t fight this for my parents or my brothers. My goal is I want to see my kids graduate. I want to stay healthy enough for that, and I would love to see my grandkids,” she said.
But she knows that with the way she feels now, and her prognosis, it isn’t likely. She admits she is dying, and her children know that as well.
She has been sick since they were very small.
“They really don’t know any different,” she said. “I’ve never been able to do much with them physically, because I’ve always been sick during their lives.”
As she has endured more surgeries, and her strength and stamina have declined, she said it has gotten harder for the boys.
“Now they know that I’m dying, so it’s harder for them.”
Zev talks a lot about her illness and the fact that she will die someday. Ramon, she said, is more reserved and quiet.
It was also difficult for her husband. They have been legally separated for about five years, she said.
“He’s a very hands-on dad,” she said. “He just didn’t deal with this. He couldn’t talk about it.”
Her immune system is so low now that she has to avoid crowds. It makes this time of year very difficult, and if her children have a cold, she can’t be around them.
“I don’t go into their classrooms anymore, so I can’t volunteer at their school or anything,” she said.
Her weeks consist of medical appointments, sitting in doctor’s offices waiting for her turn to have blood drawn, to be poked with needles and endure constant tests. She has four MRIs a year, she said.
In 2001 her vision started changing. At the time was working in the Group Health urgent care. She had the nurses take her blood pressure, and test her blood sugar. Nothing seemed abnormal, but the vision kept getting worse.
She said she went for an eye exam, and then had to be fitted for a prism in her glasses. When Julia’s eyes were dilated, she said the optometrist saw something.
“She backed away from me, and I saw her running around looking for my doctor,” she said. “It was a surreal moment. He filled out a referral for an MRI and within 20 minutes after that the family practice doctor told me that I had a growth.
“Still, at that point it didn’t click. He said they usually aren’t cancerous.”
A week later she saw the surgeon. That was on a Wednesday, she said, and by Friday morning she was having surgery to remove a tumor.
“He said if I had not gotten the surgery, I would’ve gone blind and wouldn’t know who anyone was.”
The diagnosis was a blow, and made her question why she had to go through so much so young, with two little boys to raise.
After the surgery, Julia had chemotherapy and radiation and was given two years to live, she said.
In order to have radiation, she said little metal bbs had to be placed in her head.
“They didn’t put me to sleep, so I had to hear it all, the grinding and the whole idea of it was bad,” she said.
A second surgery was performed in 2003 and a third in 2007, to remove tumor growth.
“I’ve had so much radiation that I can’t have anymore.”
The treatments brought on leukemia, and she was admitted to Fred Hutchinson to prepare for a bone marrow transplant. Her brother was going to be the donor. Something went terribly wrong.
“The second week into it, they hit a main artery and I was rushed to University of Washington Hospital, and was in a coma for three weeks.”
She lost so much blood, but really it had no place to go. She said the blood gathered in her body, forcing her skin to stretch, and form pockets on her back and her abdomen.
“I am Catholic, but that was so painful that I really thought of suicide,” she said. “That is the only time I’ve ever in my life thought of that.”
Bone marrow transplant is no longer an option, she said.
With so much surgery on her brain, she said she has brain damage, and sometimes her thoughts come slowly.
Early in November she had a procedure called an endoscopy, and some biopsies were taken. A day later, she was rushed into the hospital. Her blood pressure was very low, she said. She was given blood transfusions, but those weren’t really working the way they should have, and the doctors began talking to her about hospice, funeral arrangements, and the important documents like power of attorney that she would need to get in order.
Those are papers she already has in order, she said. It was the news of hospice that was a bit of a shock.
The next morning she had exploratory surgery to find out where she was bleeding internally. It was the biopsy spots, she said.
She spends time with her father on the Key Peninsula, and her mother in Puyallup.
No one can tell her for certain how long she will live, but she knows what she has is not curable.
Knowing that she has limited time here, she wanted to take a special, memorable trip, and her father sent her on what he calls a Make A Wish Trip, to Graceland. She spent a couple of weeks there at the end of September and beginning of October.
“I wanted to go someplace I could get medial care easily, and my dad raised me on Elvis music,” she said. Though she enjoyed Graceland, she said the best part was the city of Memphis. Beale Street, the music, the barbeque, and the atmosphere of the legendary recording studios made the trip a fun time.
“It was really hard to leave,” she said.
She has questioned why, and she has gotten angry, but Julia said she has also seen the blessing in it all.
“I have dear friends,” she said. “I learned that I’m loved a lot more than I ever thought I was, and I get a lot more prayers than I ever knew I would get.”
When she was first diagnosed, her co-workers held fundraisers and raised enough money each month to pay her rent. This went on for a full year, she said.
“I think when I was young …I didn’t really think about much else until this happened. I realize there’s so much more going on in the world than just me.”
UNDERWRITTEN BY NEWSMATCH/MIAMI FOUNDATION, THE ANGEL GUILD, ROTARY CLUB OF GIG HARBOR, ADVERTISERS, DONORS AND PEOPLE WHO SUPPORT LOCAL, INDEPENDENT NONPROFIT NEWS