Cancercare pamphlet for helping chidren deal with cancer

Here is some good basic information on talking with kids about cancer:

http://www.cancercare.org/pdf/booklets/ccc_helping_children.pdf

Home for the Holidays

Even though I am nearing 40 years old, and have a family of my own, I still refer to visiting my parents as “going home”. Still, with the emotional blind spot that I have hid behind for the last 1.5 years, I look forward to the holidays.  However, with the introduction of cancer into our lives, the holidays take on new meaning, and our trip to my parent’s house felt nothing like going home.

My Mother has always been a fastidious person, and still is.  Even though she is unable to do most household chores at this point, her standards have not changed.  A true house wife of the 50’s, she still insists on a spotless floor (no small feat with white kitchen tile), a dustless environment, perfectly made beds (complete with stacks and stacks of throw pillows), and a clutter free bathroom counter. Granted there are only two adults living in her home right now, I personally cannot imagine living life without the chaos of a little laundry on the floor or a jar of peanut butter on the kitchen counter.  I choose not to make myself crazy, but I do strive to keep an organized and clean house. I aspire to it.

Mom’s quirky but clean nature was easy to tolerate when she was healthy.  Occasionally, she got angry with the grand kids if they left a crumb trail, spilled juice on the table or left a towel on the bathroom floor.  Her slight OCD was not enjoyable, but for the  most part, we were able to tolerate her outbursts of “I don’t know if you have rules at your house, but I work hard all day to keep things clean so that I can have nice things blah blah blah”.  Now her outbursts are frequent and her standards are everyone’s burden to bear.

Mom alternates between being frustrated that she is not getting enough help, and being angry that she is  being coddled. Breakfast conversation went like this: “Damn it Jim! Are you just going to sit there and watch me try to do this?! I just might need a little help sometimes you know- I am sick for god’s sake!” At which point my father would jump up with a tired and pissed off look on his face and go to help her open a jar, put jelly in the refrigerator, or do whatever she was bitching about. Not five minutes later, her mood would swing the other way “I just don’t understand why he thinks he has to do everything! I just told him the other day ‘Can’t I just have one room? Can’t I just run the kitchen?’ I don’t even want him in the kitchen when I am here! He runs around behind me like….” etc, etc.

It became increasingly difficult to manage even a weak smile of sympathy as the long weekend progressed.  A few times, I even tried standing up for myself or my father or the kids or whoever she was after at the moment. Not a great idea. I received a lecture of grand proportions, along the lines of: “Sometimes you just need to think for yourself, Kelley. I have always been an independent thinker- a free spirit….” After a half hour in the bathroom wishing I could puke out all of the negative energy I had absorbed, I did the most logical thing. I became her-I became temporarily OCD, buzzing through the house on constant patrol for crumbs, dust, drink rings on furniture, toys or shoes on the floor, countertop litter, etc. I adopted a “don’t sit down long enough for her to think that you are not busy” approach to the rest of the visit. My husband and I decorated her house for Christmas, inside and out. Moved boxes in and out of my folks storage warehouse, packed up unused things, and carted them back to the warehouse.  We changed lightbulbs, rearranged furniture, and re-wired her DVD player (ok-that was my husband, not me).  Did I mention that we were only there for three days?

I have an older brother that lives near my parents, but rarely visits.  I was frustrated with him, as my parents both complain non-stop about his avoidance of the situation.  After spending the holidays at Mom and Dad’s house, I get it.  I wouldn’t volunteer to go there either, and I am dreading a return trip for Christmas. I want to stay at home-MY home. For all  that we accomplished during our Thanksgiving trip, none of it was good enough. Most of our work did not live up to her standards because, as she put it “I just have always liked things absolutely perfect. If it’s not perfect, I’m not happy with it. ” This statement is usually followed by “Oh, it was nice of you to try. It will do just fine.”

I wish that I had something more positive to say about the holiday, as I do know that it is increasingly probable that this will be our last Thanksgiving with my Mom.  I just wish that the time spent with her were quality time.  I am grateful for my family, and that we are able to reassure each other during this time. I am grateful that I am able to vent my frustrations, listen to their frustrations and that we are able to help each other put things in perspective.

I wish that for my Mom-that she would find the strength to join a cancer support group, as we have encouraged her to do so many times.  I encourage everyone who is  facing a life threatening or changing illness to do so, as your family can only provide you with so much support.  Sympathy and empathy are different emotions, and lead us to different conclusions, to offer different advice, etc.

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….