Cancer

Some days, it's just so hard to keep faith. On Wednesday, May 1, our family found out that my husband Cutler - Gabe and Cai's father - is facing his third battle with brain cancer. After three years of being "A Survivor," of clear scans and celebrations and handshakes with exhultant doctors, and just on the heels of such devistating news about Gabriel....THIS. 

The men in my family really have something against birthdays. Gabe's hospitalization that lead to his ALD diagnosis happened on his 10th birthday this past February 3rd. Cutler's first brain surgery occurred on his 23rd birthday: September 30, 2005. Back then, we had no idea that he had a tumor and when he became sick, it was like the whole world stopped turning and collapsed. A grand mal seizure at work led to his diagnosis of a large anaplastic astrocytoma in his right temporal lobe. His first surgery was at Wake Med, performed By Dr. Robert Allen. Dr. Allen did a good job and took out 7 cm, but he left behind 2cm that were too close to an artery for his comfort in operating. The hope was that the little piece of tumor was low-grade and would be stable for at least the next 10 years. The tumor appeared stable to his doctors at Raleigh Neurology, but they couldn't get Cutler's seizures under control despite ever-increasing doses of seizure medications. In January of 2009, we got a second opinion from the experts at Duke. They saw that the tumor was growing and that it may have been encroaching upon an inoperable area. The famous Dr. Allen Friedman, the very same who operated on Ted Kennedy, did Cutler's second brain surgery on February 2, 2009- the day before Gabriel's sixth birthday. The tumor they removed was a grade 3 (on a scale of 1-4). For the next year, Cutler underwent chemotherapy and radiation at Duke and, in 2010 was cancer-free. The seizures disappeared and Cutler was eventually able to return to a normal life and work at the end of 2011.

And now this. Another tumor. There are moments when I feel so broken.

Cutler and I will have been married for 13 years this fall and he has been my best friend for at least the past 15. We've been together almost half of our lives. He's everything I could ever ask for and I just can't imagine having the strength to get up in the morning without knowing that he is there. People keep telling me that I'm the "rock" of the family, but if that's true it's only because Cutler is the foundation I rest on. I can't say enough good about him. He's funny, kind, and he has a blunt sarcastic style that fits me just fine. He likes good music (most of the time) and we can laugh at the worst D rated movies Hollywood has to offer or cry together over the most touching. He loves theater and good musicals. He doesn't dance, but he likes the art. He doesn't sing, but he tries anyway. He's ridiculously strong and he feels closest to God when he's outside. He can cook eggs like nobody's business. He's the kind of guy who stops when he sees someone broken down on the side of the road and who will go out of his way to help a stranger. There isn't anyone I would rather spend my time with, no one I'd rather hang out with at the end of a long day. He's a good and loyal friend and I think he's our children's favorite parent. And he loves me with all of his might for all my faults, quirks, and craziness.

Sometimes I'm so afraid that we have it so good because God didn't intend to let me keep them; that maybe he's giving us decades and decades of love all crammed into a smaller time frame. I desperately hope this isn't true, but it's the fear that haunts me.

Cutler had begun to have seizures again this spring. We both knew something was wrong. He said it was just stress because of everything going on with Gabe, but we both knew better. He'd been weaned down to MRIs every 6 months because of how stable he has been. Last time, he went alone because the news has always been good, but this time I insisted that I go with him to the check up. He kept telling me I didn't need to go, but we both knew he was going to need moral support; if for nothing else but to be told he had to go back on seizure meds.

I don't remember all that happened very well when his neuro-oncologist came in with the news because I took a moment to have a small mental break down and processing what was happening ground to a slow crawl. She said that there had been a change on his MRI, a "new swelling" that was causing the seizures, and that he was going to have to start treatments again. There were hugs all around and she told him that he is family and they will take care of him. I just cried. If we're fortunate, a year of daily chemotherapy will be enough. A social worker came in and spoke to Cutler about affording his treatments and the unlikelihood of him being able to continue to work. The financial aspects may well be one of our biggest challenges. Even if Cutler can somehow continue to work, his treatments will be outrageously expensive. If he can't continue to work, we face the problem of not being able to pay the rent and other bills. It's not looking up for him continuing to work.

We had to break the news to the children and debated on how much to tell them. We always tell them the truth and this time was no different. They already knew something was wrong. They knew dad was having seizures again and they knew we'd been at the hospital for much, much longer than usual. When I told them to sit down so we could talk, our daughter said "he has brain cancer again, doesn't he?" Gabe ran to his room to cry. We decided to have a nice dinner out - our last like this for a long time. Cutler thinks he will go back to being a semi-vegetarian since it served him so well last time and we don't know how long it will be before we can afford to eat out again. We talked about what lies ahead: another year of chemotherapy and another year of being broke. Our daughter spoke with wisdom beyond her age when she relplied "we've been poor before, we can do it again." Gabe sobbed and hugged his daddy all night. He made him a special charm out of baked clay and a card that said he's scared for him. They just have so much on their plates, my strong little children, and I hurt for them that they have so much on their shoulders and so much to be afraid of: loosing Gabe, loosing dad, sickness and doctors and treatments that make you even sicker for a while.

I'm really not that strong, I just don't have the option to break. Friends ask "don't you just cry yourself to sleep at night?" The truth is that I do sometimes. I'm so afraid. I'm so selfish - I want to keep Cutler and Gabe forever and I don't know how I'd manage without them. I ask "why" sometimes and I've been known to say over the past two days "why can't I just have NORMAL problems?"... but I don't dwell on it too much. Asking "why" and demanding answers and saying how unfair it is doesn't do anything except prolong your suffering. All we can do is Keep Going. Just keep putting one foot in front of the other. Do the paperwork, file the insurance, file for grants, ask for help, go to work, take the medicine, get the bloodwork. Just keep going. I feel guilty asking for help, but we've been here before when it was just Cutler sick. With both Cutler and Gabe going through treatments, the mountain we have to climb is so high. All we can do is gather our gear and climb and accept help along the way.

We will be doing some fundraising to try to help meet medical and living expenses this year. We are so grateful for the support network that we have, the love that friends give us, and the help people send our way. If you can and are so moved, would you please consider making a donation to help our family get through the hurdles this year? Please pray for us. Thank you

www.youcaring.com/medical-fundraiser/beating-cancer-and-adrenoleukodystrophy/57162