29 February 2012

I Get Treated Differently, and it's a Good Thing

I have been basking in the glow of nice-ness for the past 6 months. In a general environment of intolerance, self-righteousness, one-upmanship and anger that has poisoned our communities and divided our country, having cancer is actually a breath of fresh air. I have been the recipient of much goodwill, acceptance and kindness.

What is it about someone with cancer (or other hardships) that bring out the best in people? I get waved ahead in lines, (well, not at the post office, but that's the ninth circle of hell,) people offer to carry stuff for me, they come by for visits and drop off meals and treats, they forgive me my intellectual shortcomings, drive my kids places, and they just plain treat me better than they treat others. This altruistic spirit has somewhat buoyed my outlook. With all the venom that gets slung around this country, it is gratifying to see proof that Americans are still capable of kindness and decency. I'm thankful for this experience for my kids to see what was for taken for granted in generations past - compassionate caring.

Is there a finite amount of kindness in the world, and if not, why don't people practice it with everyone, not just us sickies?  Maybe people just don't have the energy for what used to be known as common courtesy.  Here we are with so much technology to make our lives easier and we don't have the resources and energy to be our best selves.  We don't have the decency and common courtesy of our great-grandparents who worked six days a week, did laundry with a hand cranked washer, made meals totally from scratch etc.  As society has relaxed attitudes, we seem to have forgotten that we are essentially the same as our fore-fathers and mothers in our desire for pleasantness and acceptance.  And this is universal.  I'm glad that at least the safety net of community has not deteriorated for sick folks like me but I wish it extended beyond us.      

So now that my hair is growing in, I pass on to another stepping stone. People will quit being nice to me. I'm thinking of keeping the head shaved just to continue capitalizing on it.

26 (a) February 2012

Technical Difficulties

I've had an interesting week with blog inspiration and time, but with no laptop access I haven't capitalized on it. The mobile (iPhone & iPad) apps for blogger are lacking. No way to attach pictures, and very limited functionality. The apps don't turn sideways so I have to type on the tiny upright keyboard. The phone app doesn't even save! Sucks!

26 February 2012

It's Cancer Limerick Sunday!

My scenery changed, thus the mode,
And the blogger app takes long to load
I had stuff to say
Almost every day
But I don't like to post from the road

20 February 2012

Cancer Limerick President's Day

Our resolve to come yearly is steely
Your curiosity we answer freely
The question to peg us,
Your mom lives in Vegas?
We have to reply, "No, not really!"

16 February 2012

Paralyzed by Inertia

So I started this entry a couple of days ago.  I typed the title and then just sat there staring at it.  It's the story of my life these days.

Symptoms:
I'm finding it difficult to get/stay motivated to do anything.
All I want to do is lie in bed all day.
I don't have very much emotional energy when I'm with the kids,
I have no discipline to do what I need to do to feel better - PT, exercise, healthy eating.

I hate how I feel.  It's like being depressed, but without the sadness.  I know what I have to do but I can't seem to do it.

I've been blaming fatigue, but maybe I'm not tired, I'm more... empty.

I don't know how to fill myself up again.

13 February 2012

Will This Year Be Different?

My Mom died of breast cancer about five years ago.  Per Jewish tradition, we buried her promptly and then went home to stew about it.  After some time had passed, we gathered again to remember her and place the headstone on her grave, signalling the closure of the official mourning period 'allowed' by our tradition.  Time to move forward in our lives.  Yearly my sisters and I remember both the season of her death in August, and the season we set the headstone in February, because NOBODY goes to Vegas in August and there is a long weekend in February when most of us can get away. You see, Mom was smart and planned ahead.  She knew nobody was going to visit her in the Pacific Northwest so she retired to Vegas and bought a plot there and we go visit every year.

I'm wondering if this year will be different for me.

I had been very close to my mother growing up, but in my 30's I took on a caretaker role.  When she was sick with cancer the first time, I went out to help, and in the process found her living quarters to be less than satisfactory.  I did a lot of cleaning out, repair and organizing for her. Again, when she was getting ready to move from Seattle to Vegas, I did the bulk of the work for her. She had difficulty getting started but together we eventually made it through.  But I was rather tough with her in order to slog through not just her stuff, but also the stuff that came out of my grandparent's residence when they passed away the previous decade.  It was a lot of stuff.  I was pretty judgmental.  She picked up on this.  Our relationship was never the same.


I've had a lot of time on my hands to just sit and think and just let my mind wander.  Some of my musings have re-ignited some old thinking about Mom and me and I realize I am not so very different from her.  And now that I have what killed her, I'm feeling a very uncomfortable kinship. I suspect that my visit this year will weigh more heavily than in years past.


12 February 2012

Cancer Limerick Sunday!

At first I was all full of fight
My blog was both funny and light
As my illness wears on
And the spunk is just gone
It's hard to be clever and write.

11 February 2012

A Whole Year?

I've read and heard that I won't feel well for about a year after my last chemo treatment.  I had no concept of what that meant.  I had thought that I would be able to run a marathon after a year. (You know, if I trained and all.) But that's not how it's going to work.  It's more like I won't feel like I can do what I was doing before this began for about a year.  So the 25+ miles a week, the amount of weight I was pushing and pulling at the gym is just not happening.  All that fitness has evaporated.  I am capable of walking five miles, but it completely destroys me.  (Like in bed for two or three days afterward.)  My body just can't take it and I had no idea how much the chemo hurt me physically until I tried.

So for those of you who know me, you understand how hard it is for me to work through this.  Baby steps suck.  When I make a decision, I want it done yesterday.  Waiting is not my strength and working at a snail's pace does not appeal to me.  I am taking it pretty slow.  I have yet to make it up to school (one mile) five days in a row.  I have yet to go back to the gym and lift weights after my wildly optimistic stretch in the beginning of January.  I feel like a fat cow, I'm having trouble sticking to my calorie limit and I'm moving less than I would like.  I'll get there, but it will take my much longer than I had anticipated.



7 February 2012

Back to Normal?


Stomach
Breast
People like me who have a blissfully uneventful life are often sent reeling by big events.  Such was the case for me seven years ago when my step-mother and mother were both diagnosed with stage 4 cancer within months of each other.  My step-mother's stomach cancer was brutal and aggressive.  We lost her just after a year.  My mom's breast cancer recurrence was slightly more livable, giving mom a pretty good quality of life for another two years before she decided she was done.  I had never had someone so close to me die and it rocked my world.

The feelings after 'something big' are surreal.  It colors every aspect of your life.  Nothing feels 'normal'.  Every other breath comes with thoughts of the changes the event has wrought.  All of your thoughts and ideas, both looking back and into the future, are filtered through it.  It's the first thing on your mind when you wake up and the last thing you remember thinking before you fall asleep, and then you dream about it. And then one morning you don't think about it until you are brushing your teeth, or eating breakfast.  You don't realize this at first, but your psyche is starting to heal and move forward, past the event.  Through time, a new 'normal' emerges.  It will NEVER be like it was, but you eventually start to feel comfortable in your new normal and the healing process is complete.

Facing death, whether by illness, accident or circumstance is most often a life changer.  From reading and talking to other cancer patients, many of them make major life changes after going through this.  For some it's all about health.  For others, their new goals orbit around living life to the fullest.  Relationships are healed, work takes a back-burner to family, people are motivated, priorities change and most folks who survive say that the biggest plus to cancer is the 'wake up call'.  Earlier in my blog I touched on this, feeling as though I'd hit the reset button.  I'm not sure I still feel that way.  The drama and emotion of being diagnosed, going through major surgery, having chemo etc. has given way to a much more mundane actuality.  I find myself mostly back in my old life.  Broken down and decrepit, but still thinking the same thoughts, doing the same things and reacting the same ways to my stimuli and environment.  (With the possible exception of the addition of frequent periodic shucking of clothes because of the hot flashes.) To be sure I've enjoyed the ability to say no to stuff, which was skill I sorely lacked before.  But as I am able to do more and more I find myself starting to take on the same responsibilities I had before I was sick.  It filled me with a maniacal sense of power to say "NO! I will not be room parent!  I have CANCER!! (Tee hee!)"  But I'm not so sure I will be able to maintain that semblance of control over my life as I move forward.  

Intellectually I know that carrying extra weight puts me at greater risk of cancer and other health problems, but it's not stopping me from making homemade peanut butter cups.  (And, yes, eating them.)  I'm a good 30 pounds overweight but I'm not motivated to change my lifestyle to address this.  My muscles and joints are in rough shape, but I'm not consistently doing what I need to do to fix them.  It's a pain in the butt that I can't reach a towel in the shower because they are on the left and my left arm no longer does that motion.  But I'm not doing my PT.

I am exceptionally task driven.  I have a really hard time living in the moment or enjoying the journey.  Cancer has not changed this.  I still plow through my day with little joy.  For me, satisfaction comes when the laundry pile is decimated, not when my kids giggle with me.  I hate that about me but can't seem to change it.  If there was one gift I could take away from this whole experience, I would want it to be that I would see the joy and blessings in my life as I'm experiencing them and sharing them with those who I love.


My therapist indicated she wanted to explore how my life has changed since my diagnosis and I've come to the conclusion that it really hasn't changed at all.  I suspect it's because before we had genetic testing and MRI results I was in an initial mode of panic, but once we figured out what stage the cancer was at, I did not ever think this cancer would or could kill me.  This was not a brush with death.  It was more like I saw death sitting across the restaurant but when I got up to go to the restroom, I realized it was just pain in the ass, not death.  Big difference.






6 February 2012

Zzzzzzz...

During my chemo treatments, I had mentioned that fatigue and nausea were not my most pressing problems, but rather, I felt like my whole body was 'broke.'  I felt like I couldn't fight through the sick feeling to haul my butt outta bed.  I don't feel sick any more.

I am now fully ensconced in fatigue and exhaustion.  I drag ass all day long.  I've been trying to stay out of bed and just work through it but a couple of days a week I find myself crawling back in after I get the famn damily out the door.  

It is disconcerting to me how tired I am.  I can't tell if it's from the chemo, the Tamoxifen, the hot flashes that keep me up at night?  And it's not really sleepiness, like I was experiencing in the beginning of January when I was exercising too hard.  I'm really fatigued.  My leg muscles ache when I climb the stairs as though I'd been doing a wall squat for 90 seconds.  I get short tempered with the kids.  I have no extra energy for anything other than what I HAVE to do.  And I'm falling behind on that stuff.

Most of what I hear/read indicates that it will take about a year before I start feeling like myself, (more on that later,) and I'm beginning to understand the toll that treatment has taken on me.

5 February 2012

It's Cancer Limerick Sunday

I know this is not a chat room
And I hope this doesn't spell doom
This week I made clear
Where I stand, it's right here:
Keep your morals out of my womb

4 February 2012

Book Learnin'

My husband has a lot of high falutin' book learnin' but I do not. I have good bald head on my shoulders and a grasp of how things work in the world. Often I will articulate a thought or feeling or theory I have and he will give it some credence through having studied some formal writings on the subject. Sometimes I even talk about stuff that other more famous people have figured out before me that have actual names and fields of study.

As I was working through my thoughts on the Komen Debaucle this week, I was having some trouble putting into words what I was trying to say. Dan summed it up for me. (Which I may get to later, we'll see.)

The subject dredges up a very complicated set of circumstances and positions. I don't know enough about Conservative thought to even begin to outline them. Because if I was to do so, I'd like to show both sides of the arguments that have been ripped open by this.

Compounding this was an article I read from the New Yorker (thanks for linking, Shevawn) detailing the history of PPFA and outlining a stance that Conservatives seized on abortion in the late 70's and 80's to swell their ranks and mobilize.

There is also an article making the rounds this week claiming that Conservative philosophy appeals to lower IQ individuals.

I am continually stunned that somehow, the Republicans have convinced a good portion of lower-middle class and poor to vote for them. WTF?

I'm feeling the need to bone up on conservatism, both traditional and modern, and liberalism. I already have a useless arts degree in English. It seems frivolous to go back and get an additional one in poli sci, but that is what is interesting me these days.

And the thought that Dan summed up? I was trying to articulate that I didn't think the government needed to stick its nose in marriage, etc. but needed to preserve a woman's choice over the vehement objections of a vocal faction who disagrees with the law of the land.  Yes abortion is a personal choice, but preventing unwanted pregnancies whether by birth control or abortion benefits society in general.  He said public policy should be about things that benefit/affect/harm the republic and society in general and not individual life choices made by citizens. (Or something like that.)
:-)


3 February 2012

Well, That Struck a Chord....

Evidently my 'rant' yesterday struck a chord with many people.  I received a lot of positive feedback from it.  Today I'm going to give you a big dose of cancer reality:

I can't give you the whole picture because I do not have all my bills in, and frankly, it's too much to add up.  As you know, insurance companies negotiate with providers to lower the 'retail' rate for medical services.  Here's an idea what having breast cancer can add up to for someone who has no insurance.  These are the retail rates.


Diagnostic mammogram and ultrasound $707
Biopsy and labwork $1,303 + $230 + $420 + $761
2nd opinion from another plastic surgeon $420 (not covered)
Mastectomy $12,306 + $2,362 + $405
One session chemo $6,723
Follow up Neulasta shot after chemo $5,488  (Yes, that is correct over $5,000 for a single shot)
Remember, I had four chemo sessions.
So up to this point, the retail price of saving my life is about $70,000
I do not yet have ANY BILLS from my plastic surgeon.  (Probably wise as reconstruction seems like a frivolous expense at this point.  Much better that I get used to the new foobs and can't imagine life without them before I have to pay for them.)
This does not include prescriptions (steroids, painkillers, antibiotics, anti-nausea medication, tamoxifen.)

Even with good insurance we will have $15K or so out of pocket.  Part of that is because we switched insurance three times in the last year because of Dan's employment status, and partly because of the new fiscal year for deductibles.  (Yo, if you are going to get cancer, do it in January so you can get all your deductibles in under one year.)

Dan works hard and makes a good living.  We have economic resources.  We have good private insurance.  I had plenty of community support and family help during my surgery and treatments. We feel some of the pinch from my unforeseen medical bills.  Cancer sucks and the treatments we have for it suck worse and I can't begin to imagine the terror a lump raises for an uninsured single mother. And this is one small drop in the bucket of pain for the 30% or so at the bottom of our economic spectrum.  It doesn't have to be a catastrophic cancer diagnosis.  There are plenty of horror stories of mothers who buy food or clothes for their kids instead of their own asthma medication and die because of it.  Fathers who ignore toothaches or can't afford the antibiotics to fight a dental infection that turns septic.  What is wrong with our country when basic health care is out of reach for 30% of our population? (Yes I pulled those numbers out of my ass, but you get my point.)

I've given some thought over the past six months as to how I can give back.  I'm not one to stitch pink pillows or call a recently diagnosed stranger and tell them I'm a survivor and they can beat this.  I'm going to look for a program/organization/network that supports the most marginalized segments of our society as they deal with health crises and jump in there.  And if I can't find one, I'll start one.

In the meantime, do as I do and support organizations who provide solutions for real people.  Cancer doesn't care if you are liberal or conservative, does it?  


2 February 2012


Feeling Downright Irate....

This thing with the Komen Foundation and Planned Parenthood has gotten my knickers in a twist and I'm feeling like I need to climb the soap box.

It is my understanding, based on the NPR article, that Komen defunded PP because PP is under investigation for using government funds to provide abortions.  You know, legal medical procedures.  For its part, PP says they do not use any of the government funding to provide abortions, which make up about 3% of their annual budget.  16% of their budget goes towards providing reproductive cancer and breast cancer screenings.  35% goes towards STD testing and 35% for providing birth control.

While I do understand that some people are morally opposed to both birth control and abortions, I also know that they do so because they are pro-life.  Cancer screenings are pro-life as well.  Particularly for low income men and women who do not have any other access to healthcare.  Can some of my more conservative friends please explain to me how they justify cutting life saving medical access to the most marginalized group in this country, in the name of LIFE?

As for Komen, I've had a bit of a bone to pick with them for a while.  It's a big pink whale that has lost sight of its original charter - Susan's sister started it to raise funds for cancer research and raise awareness.  Political jockeying is an affront to Susan's memory and an insult to all of us who HAVE CANCER!

I said it last October and I maintain that the pink is meaningless, the save the ta-ta's slogans are all wrong, and while it is nice as a survivor to get a pat on the back, I don't need it as much as a widower whose wife lost the battle, a motherless child or grieving parents need sensitivity.

You know what's pink?  My mastectomy scars.  Thank god I had health insurance.