Monday, June 10, 2013

Walking the Dogs: Coping With Cancer Fears

My mother told me that when she and my father were getting divorced, she walked the dog a lot. I think what she might have said was, "I walked that dog for miles and miles." She said she did this because she was so anxious about the divorce and the uncertainty of her future. I can't blame her. At that point, she had been married for 16 years, and had not held a job for as many years. She was about to venture out on her own for the first time in her life, loading the car up with four children and a dog. And she was going to do this with relatively little money, and the need to find a way to support that crew of kids. No wonder she walked the dog so much.

I can certainly identify with my mom in many ways, since I've had many of my own moments of fear and uncertainty. But I've never dealt with anything as challenging as Stage IV metastatic breast cancer. This is a whole new level of uncertainty and fear.  Sometimes I'm okay in that fear, the anxiety ebbing low.  But other times the fear sweeps over me, puts me on alert, slows my breathing, buzzes through my brain.  It's at that point that I think of my mom walking the dog. And like my mom, I leash up the dogs, and I walk. Walking really does help, each step taking a bite out of the anxiety like a moving tranquilizing machine.

But my mom taught me another lesson.  When she was younger, she was a frightened woman, raised by two critical and angry parents, her gentle soul apparently retreating into a place of doubt and trepidation.  She grew up to be a woman frightened to drive, frightened to change, frightened for the people she loved. My grandfather's favorite phrase was, "I don't mean to be critical, but . . . ", the words after that anything but gentle and kind. The sad part was that when my grandfather died, several years after my grandmother, my mother commented that her father, my grandfather, was the "nice" parent. It was at that point that I realized more fully what she had been through.

My mother had her demons and the way she quieted the demons was food addiction (in her case, it was compulsive overeating). Food addiction ruled her life and almost took it, pushing her into diabetes, kidney failure, arthritis so bad both knees had to be replaced. Finally she experienced breathing difficulties severe enough to put her on oxygen, her life lived at the end of a 100 foot tube.  It was this final malady that almost took her life, and finally fully awakened her to the dangers of her addiction. She sought help from Overeaters Anonymous (OA).  With the aid of a food sponsor, whom she called every day to commit her food plan, meetings, and working the 12 Steps, she achieved abstinence, a healthy weight, and her health issues resolved.  But most importantly, she was happy.  Really happy.  The happiest I had ever seen her in her life.

When asked what happened, why she went to OA, she would reply, "I would look at the Twinkie in my hand and tell myself, I can eat the Twinkie, or I can breathe."

The response was humorous, but didn't really capture what my mother's actions meant.  My mother had chosen life, and the message she sent was one of hope, and that is was okay to ask for help.  Accepting help keeps us alive.

Like my mother, I am fiercely independent and I can dwell in fear. I do not want to be a burden or dependent. I am afraid to ask for help. But here I am, in a situation where I have no choice. In order to stay alive, I must ask for and accept help. At these moments, when I’m too scared to ask for help or take the hand offered to me, I look at my mother’s example. This frightened and independent woman chose life by asking for and taking help every day. The life she led was finally one of serenity and peace. My mother deserved that peace and so do I.

My mom is no longer here; she died of a stroke in 2008. I hold her love in my heart. Her strength to reach out and keep reaching out is something I will never forget. I can only hope that in my own struggle against a terrifying illness that will eventually kill me, I have the strength to reach out as well. Admitting limits never hurt anyone and it actually can save your life. My mom taught me that. I miss you, Mom. I’ll do my best to follow in your footsteps. In the meantime, if anyone needs me, I’ll be out walking the dogs.

Also published on CureToday

Saturday, June 1, 2013

Bloody Noses and Anxiety

I am convinced that I am going to bleed out due to a bloody nose. I am on a loading dose of a blood thinner,Xarelto, taking two pills a day in order to dissolve the blood clot in my neck. Part of the problem is likely due to the description my doctor used when telling me about the drug. Coumadin, she told me, has an antidote for excessive bleeding. The patient is given vitamin K, and that restores the blood's clotting ability. Xarelto, she said has no antidote. It was the words "no antidote" that made me particularly nervous. She went on to say that when a patient on Xarelto begins to excessively bleed, they are given a transfusion and the med flushes out of the system within 10 to 12 hours. So in other words, that is the antidote. But no, she had to tell me there was no antidote. So now every time I get a bloody nose, I am convinced that I will bleed out. By the way, if this is true, please do not call me and tell me this. I have one week left on the loading dose, and then I will be down to taking one pill a day. I just need to make it through this next week. Thank God for Xanax.

Really I should be fairly chilled out at this point, but something about this blood clot has me back into the anxiety of what will happen next with this cancer. I am unfortunately spending too much time thinking about it, when I should simply be enjoying the fact that my last scans were stable. To paraphrase Michael J Fox, if I worry about what will happen, it may or may not happen. And if it does happen, I've experienced it twice. So the challenge is how do I stay in the moment?

I was talking to my friend Mary Rose the other day on just this subject, and she tells me that when she spends too much time dreading the future, she literally curls her toes to remind herself that her feet are right here in the present. A simple way of staying put. And frankly, it works. Mary Rose is a wise woman.

But the other part of the equation is acceptance. Lately I've been spending too much time thinking about that mammogram my gynecologist did not order (she had just dropped me to the new every two year guideline). The result of this kind of thinking is anger and hurt, which frankly is not going to help. So, as they say, acceptance is the key. Anger, hurt, and sadness is not going to change the fact that I have Stage IV breast cancer. I still remember someone asking me if there was Stage V breast cancer. I told them that that would be dead. It's good to have a sense of humor about this.

There are moments that are better for me. Finding the clinical trial for a breast cancer vaccine for HER2+ breast cancer was a hopeful moment. Having the researcher write me, telling me that, while I could not take part in this phase I study, she would put me on the list for phase II, and that it was very good news that I was stable. This made me even more hopeful. I hope to be here for her Phase II. But the most hopeful thing of all is the fact that there are many breast cancer vaccine trials being conducted right now. The idea that a vaccine can stop breast cancer certainly gives me hope for the future.

Other helpful moments are when I can help somebody else. I've tried to contact a few organizations who connect cancer fighters with each other, so that the person who is further down the road can support the person who is just starting. At this moment I've been told to wait a little longer before starting this effort. But I do post on the site breastcancer.org, and occasionally something I say helps someone else. That is a good moment for me, a moment not wrapped in the anxiety for my own future.

I've been told by others with advanced breast cancer that it just takes time to adjust to this new way of living. I've always been somebody who is close to my emotions. Denial has never really been my forte. But perhaps a little denial is in order here. I am hoping that once I get into a cancer groove, I can slip easily into denial, and for the moments I focus on the fears of the future, I can just curl my toes to remind myself that I'm right here right now. But then again, that is easier said than done. Meanwhile, there is Xanax. Thank God for Xanax.