Facebook games, cancer, and my mom

A few days ago a friend of mine posted a link to a blog at Politics Daily about the Facebook "cancer" games that have been going around.  You know, where women get a message to change their status to the color of their bra or where they put their purse using suggestive language all in the name of cancer awareness.   I have to say it made me think a little deeper about how helpful that actually is, how silly it is, and how damaging from a Christian perspective, which is not the subject I wish to discuss today.  The word cancer brings many of my family to mind.  My father has so far survived malignant melanoma.  My maternal grandfather died of the same lung cancer that took my mom.  Both my grandmothers survived breast cancer in an age when that was hard to do.  My paternal grandmother did eventually die of stomach cancer.  Then there are the numerous aunts and uncles who had some form of cancer or another, many of whom succumbed eventually.  But the one I think of most at the mention of cancer is my mom.  Maybe because she was the closest to me to die of cancer.  Maybe because I was only 22.  Maybe because my sister, younger than me by four years, and I were her only caregivers at a time when our peers and friends were all in college where we only wished we could be.  Beyond that, my mom has been in my thoughts a lot lately for many reasons.  November marks both her death and her birth and I frequently think of her most often this time of year. It's the start of the holiday season.  My sister just got married and I was aware of a big hole in the festivities that would have been filled by Mom.  I have a four year old that is going through a trying stage and I want to talk to my mom about what to do.  

This is why Donna Trussell, author of the these blogs, struck a nerve in her blog on the bra game.  She has ovarian cancer which is overlooked in awareness campaigns and is much deadlier than the more common breast cancer we hear so much about.  She talks about "Cancer envy – wishing you could trade in your bad-stat cancer for a more benign variety – is known only to those with personal experience with this dreadful disease."  She probably meant those with the disease since that is her perspective, but I think it can be applied to family, close friends, and caregivers too.  My mom died of lung cancer, not a "womans" cancer and this caused some problems in her care.  Not with her doctors, they were great, but with my mother's, sister's, and my education.  Early on we contacted the American Cancer Society on the advice of my mom's doctor for support and to educate ourselves about the type of cancer she had.  To say they weren't helpful is an understatement.  They sent us 30 miles into the country for a support group when we lived in metro Denver because they said it was the one closest one to us.  Anyone that has cared for a seriously ill person knows what a huge investment of time and energy just daily living takes.  After work and life, getting to this support group was incredibly difficult.  We were in Denver, not some little town without resources and they tell us to drive to the sticks for help?  Then we turned to them for help when our itty bitty sub-basement apartment (all a 22 and 18 year old caring for a cancer patient without health insurance could afford) developed a severe flooding and subsequent mold problem which her doctor said was unhealthy for someone with LUNG cancer (duh), they told us they were very sorry but they had no suggestions for us.  But what does this have to do with cancer envy?  We contacted the ACS several times for resources or information on my mother's particular cancer.  Each time we got transfered to multiple departments before someone would take pity on us and send us some pamphlets and booklets in the mail.  This happened at least three times and every time they sent us information on breast, ovarian, and uterine cancer as though the only cancer that concerned a woman was in her "woman parts".  This infuriated me.  In every instance the ACS failed to listen to us and our needs.  This from an organisation that claims to have insight into the special needs and concerns of cancer patients and their families.  As you can see, even after more than 14 years this still sends me into orbit.  I refuse to support this organization and will tell anyone within earshot why they shouldn't either.  Go ahead, check them out with some of the charitable rating services.  You will find many of these stories.  I never did get a chance to research her cancer and I wonder how it affected her care.  Were there questions we should have asked if we had more information?  Were there treatments we could have pursued?  We could not be an advocate in mom's care because we lacked information.  I kept thinking it would be so much easier if she had a "womans" cancer.  I would have had more help and education than I could handle. To this day, the sight of millions of pink ribbons for months on end gives me a disquieting left out feeling.  I understand what drove this obsession with awareness of cancer specific to women.  Once upon a time our male dominated medical profession spent much less time researching and treating those cancers.  But that was long ago and it's time we remembered that women can and do get cancer in all parts of our bodies.  As Donna stated in her blog, "But don't color me pink. Or teal [the color for ovarian cancer]. I want a new color. I want a rainbow. We use the word "cancer" for what is probably a thousand different diseases. The segregation and disparity in funding between types of cancer is absurd. Name any cell in your body, and you've just named a chance for mutation and cancer – at any time, for any person."

My beautiful, amazing daughter

Being a mother is both the greatest joy and largest stress of my life. I'm sure all you parents out there totally understand. It's way beyond what I ever imagined. It's a gift of amazing proportions, one I thank God for though not often enough. Today especially I am reveling in her capacity for learning and creativity. This morning, one of my hair clips rolled under my king sized bed just out of my reach. I asked Calissa if she could reach it. At first she said no, then told me she would try. She scoped out the situation very seriously and then ran around to the other side of the bed. I assumed, probably because this is how I would do it, that she would crawl under head first and grab the clip. Nope, not her. She rolled over on her belly, stuck her feet under the bed and scooted back until she could scoop the clip up on the cup of her feet and the scooted back out, clip in hand so to speak. One of the things I've been teaching her recently is to clear her place after meals. Usually she just dumps her dishes in the sink or puts them on the counter. After breakfast today, she picks up her bowl and spoon, opens the dishwasher, and puts her spoon and bowl pretty much where they belong. She then comes over to me, asks me if I'm done with my bowl and when I say yes, puts them in the dishwasher as well. I'm sure that in time, I'll have to yell and scream and threaten awful things to get her to pick up after herself. But for now, I'm just going to enjoy my little helper.

My wonderful daughter

I thought it was about time to update everyone on Calissa's doings. Her pretend play has taken a big jump in the last couple of weeks. She has discussions with her toys and stuffed animals, which is really cute. I love to see how she learns from her environment. As with most families, dinner is a time to catch up and discuss our day. Yesterday, the batteries in Calissa's music box needed replaced and at dinner she told her dad how her music had "broken". She is learning her numbers. As with most 2 year olds, she only gets the concept of one and more than one, but she is learning to recognize the numbers as symbols. She had taken her train tracks completely apart and I was putting them back together yesterday morning. Part of the track is a short spiral to a bridge. As I was putting this together, she pointed to it and said, "Look, it's a six." A couple of weeks ago her grandpa gave her a toy with the alphabet and numbers 1-10 on it. This has several modes, counting, learning the letters, associating words (horn goes with H), and spelling. I'm not real fond of the spelling because it's not something Calissa can do yet, so it gets very repetitive and you get the wrong choice noise. This is Calissa's favorite mode. Even when she gets really frustrated (she knows the wrong choice noise, and what it means), she won't let me turn it to another mode. I have a feeling she will be asking me to spell things for her soon. I have no idea how I'm going to keep up with her. We also had to put catches on her closet door and lock up all of her books at night. She started getting up after we turned off her light, getting a book, turning the light back on, and reading. So we started not just turning off the light at the wall switch, but on the lamp as well. It took her two nights to figure that out. This makes me very curious about the role genetics plays in this. I used to do the same thing, taking books to bed. I'm sure that much of this is typical toddler behaviour. The natural byproduct of a curious and active mind paired with a desire to put off sleep. We buy her lots of books, and read to her often, so I'm sure nurture is also a big part. I wonder how she can be so much like Ivan or I in some regards. Genetics has to be a part of this. She isn't emulating me. I read before bed, but she is already asleep. Or am I simply ascribing a normal behavoir to taking after a parent? For all I know, toddlers of non-reader parents do the same thing.

Camping in Oak Creek Canyon

So Ivan, Calissa and I went camping this last weekend in Oak Creek Canyon outside of Sedona. I've always wanted to go to Sedona and I will most definitely go back. I could spend a month just going through the artist galleries and studios. And several more months exploring the area around Sedona. I could shoot thousands of pictures in only a few days. The scenery is amazing. The colors are gorgeous. If you are driving down I-17 from Flagstaff, do yourself a favor and take a detour through Sedona. It's worth the extra hour or two.

This is only our second camping trip since Calissa was born. I was looking forward to the fresh air and lots of exercise. I was really hoping that I could break the insomnia that has plagued me since DD's birth. Two plus years is alot of not sleeping. Although I did get to go on a couple of short hikes (or walks), they were solitary and not nearly enough. On the first I went to the bottom of the canyon to hike along the stream. It was gorgeous and relaxing. I enjoyed being able to have some uninterrupted photography time, but other than the climb up and down the hill to camp, it wasn't really a workout. The second hike was also along the stream but farther up the canyon in a flat area. Again, wonderful, but not exercise. I slept pretty well while camping, but the insomnia returned as soon as we got home.

We came home a day early due to some noise problems at the campsite. The site we were at was located just off the road, which ended up being much busier than we expected. A very popular trail was located just up the canyon from us as well as several resorts. When we set up camp on Wednesday, the campground was pretty empty. By Friday afternoon it was busting at the seams. The sites had an 8 person, 2 vehicle max. The group next to us ignored that rule. By Saturday, we were in the middle of a veritable tent city. There were probably between 35 and 50 people congregated in one site. They had spread out their tents as more sites became available, but they still had 5 family tents in the site to our north, 4 in the site to our south, and 2 in another site adjacent to the northern one. I also think they had another site just across the road in the campground. It was obviously some sort of family reunion. For as many people as they had, they were pretty quiet. They weren't blasting music, or shouting, or acting up. But that's still too many people. I go camping to get some space, some peace. Our tents ended up mere feet away from each other, our kitchen just steps from one of their circles of chairs. The worst part was that general courtesy regarding boundaries was ignored. The kids ran in and out of our campsite with no admonishment from the adults. The older folks also walked back and forth between our tent and kitchen area. I shouldn't have to stop and wait for traffic to ebb in order to walk from my stove to my tent. The kids continued to get bolder as they realized there were no restrictions being enforced to the point that when we laid down to take a nap (which turned out to be impossible) on Saturday afternoon, they continually came up to the windows to peer in at us. A camping family reunion is a wonderful idea. But this was not the place for it. There was a group camp site they could have reserved, a KOA nearby, or even one of the resorts. At the very least they should have gone to a campground where they could have gotten several sites right next to each other. There were places available like that. The rangers did nothing to enforce the rules either, several came around on Friday and Saturday. So we forfeited our last nights fee and left. Next time, we will stay in one of the bigger campgrounds where we can get away from the road and rangers are there all day to handle issues like this.