Saturday, February 25, 2017

Just Be Courteous

After 52 years of living, you might imagine that my life experiences should have hardened my emotions causing me to spend less time thinking about and letting the noticeable absence of simple courtesies in our society get to me. Sadly, it hasn’t.

Last week I received an email from a person who wanted to speak with me about my life with cancer. They said, “After reading your blog, I was hoping to set up a call with you to describe our series and mission and see if you are interested in participating.” I gladly agreed, and a time was set for our conversation.

Turning to the internet, I found she is who she said she was. This person works as a television segment producer for a popular morning program. In the email she said, “One of the segments is a profile of a woman with advanced breast cancer and what the journey is like.  We are hoping to shed light and bring more attention to advanced cancer patients and understand the support they need.”

The morning of the interview, as I prepared for the day, I thought about what I might say. I spent time writing my thoughts on paper. An hour before the interview, I sat down at my desk re-organizing my written thoughts and drinking water trying to lessen the hoarseness of my voice –allergens in the air and my acid-reflux raging against me were giving my one working vocal cord a hard time.   

The time for the call was near. I sat nervously waiting, reading over the pages of my notes. Here are a few of those thoughts:
  1. stop blaming people for their disease
  2. breast cancer is many diseases not one, each with different characteristics
  3. the longer it stays in the body the more complicated it becomes making it harder to treat
  4. people need to scrutinize studies that are published, and pay attention to the words used otherwise non-cancer people and new patients often are led to believe a cure is close when it is not —words like may, might, petri-dishes, mice studies, human studies, and variables need to be emphasized
  5. awareness campaigns need to better educate people about cancer—it is so much more complicated than simple cells growing out of control
  6. the financial struggles that come because of the disease cause ongoing emotional and physical stress--there is almost no help that I can find for those above a certain income level—hospitals and treatment facilities do offer some relief for monthly amounts due, but not always and not enough.
Two-thirty came. I sat at my desk. The minutes ticked away. The phone call never came.

I emailed the person the next day saying I hope she and her family are well, and asked if the absence of the phone call was due to the busyness of her job creating some unforeseen event. I added that if she found someone else to speak with then I understood. You get it –blah, blah, BLAH!

She emailed me later that evening and regurgitated my email back to me.Yep, her family is fine; yep, she is busy; and, yep, she found someone else.

Okay. Fine.

I was happy she and her family were well.

But . . .

Somewhere in that over 24-hour period before I sent the email, I am guessing our scheduled phone conversation must have crossed her mind. In an age where communication comes in so many forms and takes little time and money for messages to be sent, I find her actions baffling. Besides the absolute unprofessionalism there is an irony that slapped me across the face. This person wanted to find out how others might better understand the support that advanced cancer patients need. I wondered had she given any thought to the topic she wanted to highlight in the segment series. Something so easy to do and takes such little energy; that of respecting another person’s time. A simple courtesy that all people should show one another.

So now, I have one more item to add to my list of what can be done to “understand and support” the needs of an advanced cancer patient.

Never waste their time.

I don’t get it.

It is not hard . . .

Just be courteous.

Tuesday, February 21, 2017

Health Update

Yesterday was scan day. Around 2:00 my oncologist's PA walked in wearing a smile on her face which could only mean one thing: my scan results were spectacular! I am still celebrating today.

My platelet count was 88,000 adding to my joy.

Yep, a great day for me, and the shortest post I think I have ever written for you.


Sunday, February 5, 2017

The Importance of a Clean Home

Ah, a clean home . . . it feels so nice. The visual pleasure of looking at an environment that is orderly and as dirt free as possible does something to my brain. I feel more relaxed. More in control.

The fragrant smells that waft through my home whether from the Glade plug-in on the wall or from some cleaning product filling the air is quite pleasing to me. Take a trip down the laundry aisle of the grocery store and maybe you will see what I mean. Those scents on that aisle grab my attention sending me gracefully dancing down that aisle—mentally of course.

There is a long history of the cleanliness of a home being called “women’s work”. It is deeply embedded in many societies. This role--though, I am not a scholar on the subject--is tied to the fact that women are most often the caregivers of children. I am not opposed to women taking on this role in today’s society if they want to—obviously, since I chose to stay at home with my children; it is by far the best job I ever had, and I am immensely grateful that my husband brought home the necessary cash allowing me to do this work. But, when a woman works outside the home, viewpoints of who is responsible for the cleaning of the home need to change.

Through the years, I did my best to manage the daily operations of my home, but did not do it exceptionally well the more I was pulled away due to the activities of my children. There were also times I was paid for work outside my home but unfortunately there were consequences.

I cleaned a ballet school--my girls helped--and did basic maintenance for the building in trade so my children could attend classes. That same school paid me to make and alter costumes. I also received additional compensation to manage those costumes during several productions. Prior to my stage IV diagnosis, I juggled working several part-time jobs: one was in a daycare working in the classrooms when needed and helping with its afternoon operations; some days I worked in the office for the previously mentioned ballet school and after hours, three times a week, I cleaned each room of the daycare—these businesses were next to each other, thankfully; the most time-consuming job was my work as a merchandiser in several grocery stores because the paper work came home with me. All of this was done while still homeschooling my youngest and taking two of my older children to their daily academic classes away from home and then bringing them home later.

As determined to do-it-all as I was while working those jobs, after nine months of it I accepted the fact I had to drop one of them. Still, I continued to be away from home, a lot. Sure my home was dirty. Sure I was involved in dog rescue caring for several dogs including my own. And, sure, I had more to do than I ever could get done. But instead of someone offering to help or asking my husband to give me a helping hand, I was blind-sided with an attack on my mental state.

I discovered the sinister plot by a few of my family members during an interrogational conversation on the telephone one evening about how I was living and raising my youngest child. I knew nothing of anyone’s thoughts of me until that conversation. It was all quite bizarre. The next day my husband received a phone call. The person on the other end said it was imperative he come over. My husband left with no idea what was going on. When Greg returned home I discovered I apparently had . . . a hoarding disorder. My husband was told he needed to “fix me”. We completed the puzzle and realized my family members, who do not live in my home, had begun a covert operation against me. Instead of helping me, an intervention was in order.

It is true my house was dirty, cluttered with misplaced items, dishes in the sink with books and papers scattered on tables. It was also true my youngest –10 at the time--liked to sleep on the couch, and her bedroom was not painted in a favorable little-girl color because her bedroom had been a former home-office--this was apparently bad too. And, since our daughter kept getting strep throat, it must be from all those animals I had living with us. (Yeah, wow . . .) I was getting the sense that someone needed a hobby and had spent too much time watching episodes of cat-hording women with their 100 cats producing waste all over their living spaces. If this show has ever crossed your path then you know this show documents a family’s intervention in hopes the person, living quite differently than most of us, will return to the life that most people consider normal. To some people--not the people who lived with me--I had become one of those women.

On the surface it was laughable what I was hearing. But, the deeper issue was not. How could this be happening? I was a woman who got up in the morning, cared for my animals, secured care of my youngest child or took her with me, drove the other children to their classes, and spent the rest of the day spreading my time between all my jobs, getting home at night, finishing paperwork, cooking dinner, educating my child, and finally collapsing leaving dirty dishes in the sink, laundry unfolded in their baskets, waking up the next day to do it all over again or giving my best effort to try and catch up from being gone the day before.

Then a conversation occurred between me and another family member in a public place. Apparently, this small group of family members believed I needed to talk to someone. Maybe that someone could help me. (By someone this person meant a psychologist, or perhaps a psychiatrist.) This from someone who gave me a cartoon snipped from a daily paper years before saying “the cleaning can wait”.

It was official. I was under attack. All because of a dirty home.

That year we stayed home for Thanksgiving. By Christmas I received an apology from one individual, only because he didn’t want us to skip the family gathering at Christmastime. I accepted it because of my children, and darn it, I couldn’t not talk to them forever, they were family.

When my metastatic condition was made known, my clean house--or my not clean house--depending on your definition of clean—and my mental disorder were put away. I quit my jobs, not because of the family’s thoughts of me, but because of my disease. I had full support from my husband. He agreed I needed time to focus on getting my personal things in order.

Time went on, but I have never forgotten how hurt I was—still am. Last year, I received the most honest apology from one of those family members involved in my attack. She unfortunately had experienced with her own family the nightmare of someone blaming her for something untrue--unrelated to house cleaning, but something that made her see how unfair her family had been to me. Judgments made by spectators can in fact be wrong. I hate that it took something horrible to happen to her for her to see the horrible that had happened to me, but the apology and her acknowledgement that she was wrong was needed, by me.

So, today I still find my abdomen muscles tense when I think about that time in my life. My muscles are tensing now as I write. Each time I have a good scan, I have wondered if I should get a job just to help out with my medical bills even though that effort would hardly put a dent in them. I wonder too, if I went back to work now, would my living environment become chaotic again. And what will happen if my disease takes control? Will people consider my dirty house a risk to my child’s health because I am too sick to clean it? My environment in my home is the only thing I have any control of, at least for now. Do I continue my efforts to finish my list-of things-to-do-before-I-die while keeping my home in control? Or do I get a job?

People like me with metastatic cancer face many obstacles and employment is one of those. We are not always available 5 days a week from 9 to 5. Our life can change significantly quickly. Neuropathy can make standing for long hours difficult. Digestive issues can be embarrassing and can make us late to work. Other illnesses related to our cancer treatments, like my recurring urinary tract infections can cause missed work days. Any employer would have to be understanding. I realize these are excuses and could possibly sound whinny, but these are some of the reasons why getting a job is not an easy decision nor working in that job easily accomplished. I fear losing time spent with my youngest child. I fear, too, losing the one thing I can control in this life; a clean, organized home where I can hide from the world because cancer takes everything.

Get a job . . . I think that thought with every clean scan. I am struggling.

What would you do?