Some things never change

I know that I am one of millions of people who have been indirectly affected by cancer. I am also a cancer survivor, though I consider myself to be one of the very lucky ones. I was diagnosed with stage I cervical cancer while I was pregnant with my third child. I went through a lot of worrying, but my treatment was minimal. Now, I get an exam every six months, and that is about it.

When my Mother talks about her cancer, I try to remember how scared I was following my own diagnosis.  As vastly different as things have turned out for us, I do know that she spends every waking hour trying to prepare herself for the worst case scenario. In my experience, the worst case scenario never played out. For her, every step along the way has confirmed her biggest fears. Her ordeal began almost two years ago, and everyday since that day in April 2006, her life has been about cancer.

I have heard from others how common it is for cancer to take over a person’s life once they receive that fateful diagnosis. I wish that I had realized up front what exactly that would mean. For my family it has meant that cancer is the subject of every conversation that we have with my Mother. Whether she is preparing for a doctor’s visit, has just returned from one, is choosing what to have for dinner or what to wear for the day-it’s all about the cancer. Again, I try to identify with how she feels, I really do. It sucks for her. She has been through seven major surgeries in less than two years, has not been off of chemo for nearly fifteen months, and can hardly walk some days.  I understand all of that. There are still days where I honestly wish she would just shut the hell up about it.

She will ultimately die from her cancer. Her care is mostly palliative, and we knew from the beginning that would be the case. Unfortunately, like so many people I had internalized a Hollywood version of illness and death, which has kept me from experiencing her ordeal with her.  Since her diagnosis, I have been waiting for my Mother to share her wisdom with me in a “Tuesday’s with Morrie” fashion. I realize now though, that she is still the same person that she was before she became ill. Stubborn, self-centered and angry. I know, what shocking things to say about a sick person, right? Would it be shocking if she weren’t ill? As an adult daughter, I can admit now that my relationship with my Mother will never be great. It never has been. We push each other’s buttons like only a Mother and daughter can.

As her daughter though, I am the one most obligated to listen to her endless talk of cancer. My Dad has spent their marriage in typical ’50’s style-ignoring her. My brothers, though they both live closer to her than I do, have followed Dad’s example. They avoid her. I know that they are doing their best to cope with a depressing situation. They absolutely have the right to avoid her when they can’t handle being around her. However, because my parents stay with me and my family when she is receiving treatment, for us it’s all cancer-all the time.

Cancer has taken on this persona for me. The persona of someone who is capable of taking over the world, and destroying everyone in it.  Cancer is Osama Bin Laden. Cancer is all of the bad things that happen in the world, the things that I can’t explain to my children, no matter what words I choose.  Cancer doesn’t make sense and it never will.

Surrenduring

When my Mother was diagnosed with cancer 19 months ago, I realized exactly how powerful doctors really are.  How powerful, and how fallible.  I have never been one to idolize doctors.  I’ve had several experiences that amount to  nothing short of malpractive. Now, I take careful notes at all medical appointments, whether I am visiting my own physician or my mother’s onocologist.  I research terminology, medications, and make an effort to be informed.  There is however,  only so much that can be done without a medical degree.

After months of chemo, my Mom was too weak to carry a plate of food to the table. She insisted on trying though, at nearly every meal-which resulted in a lot of broken dishes, and a lot of frayed nerves.  She had, and continues to have peripheral nerve damage resulting from a combination of chemo drugs that her small town onocologist chose to use.  The surgeon that she was referred to refused to operate on the tumors in her liver, and she was told by her doctors to “get her affairs in order”.  When she asked the surgeon if her death would be painful, the asshole said “it’s not the easiest way to go”.  She took no treatment for six months.  During that time, the cancer came back with a vengance-with some tumors nearly tripling in size.

Conversations with my Mother during this time period inevitably led to talk of which of her belongings she would like for me to have.  She was exhausted, as were we.  She began showing signs that her liver was not functioning well, logging several visits to the emergency room for unbearable pain.  In July, fifteen months after her initial diagnosis, I received a newsletter from a local hospital.  I’m not at all religious, but the information contained gave me instant hope-it was like receiving a message directly from heaven.  The article told the story of several cancer patients that had “non-resectable” liver cancer-meaning doctors had decided that it was inoperable.  They were using a new treatment to send radioactive beads directly into the tumors.  While I don’t remember the details of the article, I do remember that history of the patients seemed remarkably similar to my Mother’s own.  We immediately went back to the doctor- a new doctor-this time at a world class facility.  The doctor there was appalled that she had been told to prepare for death, and had stopped taking treatment.

That was five months ago.  While we know she will never fully recover from her cancer, she has enjoyed five more months of visits with her grandchildren, and she is enjoying a higher quality of life than she did during previous treatments.

I learned such a valuable lesson as a result of this experience.  There will of course be a time when Mom’s  fight is over,but when she will decide when she is done- not the doctor.  As a patient (or an advocate for a patient) don’t expect your doctor to present all of the options to you.  Look for options, ask questions and realize that, as knowledgable as your doctor may be- you are ultimately responsible for your treatment.

Ultimately, Mom’s best option was to participate in a clinical drug trial, so she did not receive the bead treatment that led us back to the doctor.  However, the beads may be an option for her later.  It’s good to know that there are options.

Here’s the story…

Life lived long  is a commentary about where I am right now. I am fighting with a feeling that life has already gone on for a long time, that it is dragging by and I am tired-I think they call it middle age?  That sounds much more pathetic than I would like for it to-but what good is a blog if you can’t be honest in writing it, don’t  you think? Well, maybe I will go back and edit/delete that part later.

I am in my late 30’s, have been married for 20 years (come July) and have three kids-one teenager, and two elementary age boys.  I work at home, and am a part time care giver for my Mother, who has stage IV cancer.

I am what many Moms are to their families: taxi, time manager, money manager, dog groomer, laundress, seamstress, gardener, housekeeper, decorator, entertainment organizer, chef, confidant, counselor and advocate-and that is just the list from the last 48 hrs. Through all of that, I would just cry crocodile tears of gratitude if-maybe just one time a week, someone asked me about my day (week)!

I imagine this as a place to chronicle what is happening on all of those fronts.  It would be great if I had some useful information to offer someone seeing a loved one through cancer, dealing with a teenager, dealing with young kids, and trying to keep a marriage alive. I don’t claim that I do, but I hope that I have something interesting to say….