Gifting Joy

It’s been a tough year for everyone, and my family has been hit hard. The crash of the economy has all but dissolved our daughters college fund, and my Mother has cancer.  This might be our last Christmas with her.  After nearly 2 years of chemo-she is hardly the same person, physically or mentally.  Then there is Dad, who has done a great job of taking care of her. He needs something great too.  And my brother who lives in the same small city as my parents do-who does the grocery shopping, yard work, holiday decorating, etc.- deserves a vacation.  If I could afford to, I would send him someplace great, like fishing in New Zeland.

As it is though, I am not able to do that, and as my brother he understands that treating him this year is not my top priority.  Looking for a way to treat Mom is.

Of course, as a family, we have spent the last 20 months thinking of the things that we won’t have the chance to do together.   Mom and I always talked about opening a business together.  We always talked about going to Paris together. These are things that always held promise, things to hold on to when our present day lives were not living up to our expectations.

My Mother and I have always made the effort to travel together in the past, and she is the best possible companion. Our annual shopping trips to San Francisco, were wonderful and helped me stay sane when my kids were little.  Today, cancer has made her so weak that she is unable to travel.

Mom will be off of chemo for the next two months, and while a long flilght to Europe is off of the table, we are hoping that  she will get stronger, and that we will be able to take a short trip to New York to see the Met.  Though we have both been to New York, neither of us has had the time to thoroughly scour the museum.

A few weeks ago, I bought Mom a silver tree ornament shaped like the Empire State building. This was my intended Christmas gift to her, which I bought hoping to help her look forward into her future, past chemo and possibly even past cancer. A future trip filled with art, theater and shopping.

The ornament has been sitting on my desk since I bought it, and as I look at it now, I don’t feel the hope that the gift was intended to bring.  I feel sad and afraid.  Sad that there are so many things that we won’t do, and afraid that she might not be able to make this one last trip.  I hope that when Christmas day arrives, I will be able to present the ornament to her with joy, and give her something to look forward to. Just in case though, I’ll keep working on the scarf  I’m knitting for her.

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

Wait, what just happened?!

So far, I have only shared my feelings about dealing with cancer.  Cancer is a confusing and upsetting roller coaster ride.  Dealing with a teenager can be described with those words as well.  If you are dealing with these two things simultaneously I advise you to lock your self in the bathroom and cry quietly.

I remember the six hour drive home from my parent’s after discovering that Mom had cancer.  I cried of course, just enough to make the lonely drive hazardous-so I  drove carefully and took  my time.  I was not in any hurry to get home and share the news with my kids, who were 6,8 and 14 at the time.  I knew that they would have questions that I was not prepared to answer. What ever came up though, I wanted to be honest with them.

So, I sat them down at the dining room table and told them that Grandma had cancer, and made an effort to explain what exactly cancer is. I told the kids that the Dr.  would give Grandma medicine that would make her feel sick but would also hopefully make her live longer.  Then, I told them that she would probably not get better.  My mistake was in using the word “probably”.

The kids didn’t ask as many questions as I thought that they would, so I stood from the table feeling like I had done as good a job as possible preparing myself for the discussion, and had given my kids an adequate view of the situation: not too much, not too little information.   I was struck though when my 8 year old said: “When Grandma gets better can we….”. I don’t remember the end of the sentence here, but I remember thinking “Wait, I am sure I just told them that she would not get better!” Exhausted I let his question slide and told him we would see about it (whatever the question was).

As the weeks past, I realized that my youngest children, both boys-were dealing with their Grandmother’s illness in the way that children should. They were optimistic, had faith that medicine and doctors could solve the problem, and just could not imagine the finality of death.

However, having just stuck both feet firmly into the hormonal pool that is adolescence,  my teenage daughter was not as blessed with the blinders of optimism.  Though she was a  good student in the honors program, she immediately began to miss assignments, fail tests and display a generally crappy attitude about everything.

It’s been the  worst feeling to watch my daughter struggle to maintain a solid sense of self throughout this ordeal.  While she is back on track (for the moment), it has taken a lot of work on everyone’s part.  We have kept a close watch on her grades, encouraged her to maintain healthy relationships and yes-we have taken her to therapy.  She has hated every minute of it-and so have I most days.

I knew this was coming-that my little girl would eventually be taller, prettier and smarter than I am.  I  and have had years to think about how I would parent my daughter through being a teen- which were the most difficult years of my life.  Adding “death of a loved one” to her list of challenges is not something that I wanted for her (or any of my kids, or myself for that matter), but here we are.

Right now, my daughter prefers not to talk about Grandma’s illness.  In fact, right now, she doesn’t do much talking to me period.  Again-I was prepared for this, but it still hurts.

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….