Monday, December 31, 2012

Happy Damn New Year

I see from The Sarcastic Boob's latest post that I am not the only one suffering at the hands of medical politics right now, but I usually stew about a bad situation and cry it out and pout for a while before getting mad enough to finally blog it out.

And I could still have a few days of stewing left in me, so I thought I ought get at least the basics down on blog.

Last year, my oncologist's office merged with another oncology business (I say business, not practice, because it is clear after a year where their focus lies), then six months later broke with the MAJOR insurance/hospital group in our area (over money). I had a "continuation of care" to continue seeing him until the end of the year, at which time I would have to change insurance companies or change oncologists.

I worked very hard (or rather, my insurance broker did) to find a Medicare plan for me for 2013 that my oncologist now accepted, which also included my primary care doctor, without whom I would be lost. We felt certain that (in November, during open enrollment) we had found a very good solution for me.

Friday, midday, I saw my oncologist. My oncologist of SEVEN YEARS. I thought all was fine, we had a nice visit, I left my new insurance card info with the front desk. I had my blood drawn through my port in the infusion room, at which time the nurses informed me that as of 01/01/13, they would no longer be drawing any blood through ports in the office. Not even on an exception basis, the basis on which I had been getting my blood drawn there still since the new business tried to nix it. I had JUST seen my doctor, who surely KNEW of this change, who definitely KNEW I was one of the exceptions he had cleared and he said nothing. I told the nurse that I would no longer be getting weekly blood draws then, Xeloda protocol be damned. I have bad veins in the one arm not at lymphodema risk, and frankly I doubt I could even do MONTHLY blood draws in the traditional way without serious mental and physical pain. (long story there) She told me they could set me up to be able to the infusion center on an out-patient basis at the hospital. I asked if she would arrange it at the hospital nearer my home, rather than the one nearer to the oncology office, since obviously, why would I make the weekly drive to the further facility. I also have vowed never again to go into that particular hospital.

Needless to say, I was crying. I was crying on my way out of the building, where I ran into my oncologist. In my tears I said to him, in accusation, that he hadn't told me I would no longer be able to get my blood drawn there. He indicated that the decision had been taken out of his hands this time. I told him I could not use my veins, and that the nurses said they would set me up at the hospital. He assured me that he understood that I needed to use my port.

He KNEW how I am about needles, and KNEW of the policy change, and KNEW that after seeing him I was headed to the infusion room for a blood draw, where surely he KNEW the nurses would inform me of the change in policy.

Frankly, I think he WIMPED OUT (if someone is a woosie, what is the past tense of that? Woosed out?) He WOOSED out on being the one to tell me about it.

I sat on a bench in the building and cried while texting someone for a few minutes, then made my way to my car and sat sobbing for at least 30 minutes. When I was regrouped enough to drive, I headed home, and on the way decided that I needed to drown my sorrows in chow mein.

But wait, this isn't even the BAD part.

About a half an hour later, in the Chinese restaurant, the Oncologist's office calls to tell me that my new insurance, the one I so carefully chose, would not be accepted by them for the new year. Doctor is not on my plan. Oh yes he is! I insisted.

This is where it gets bad, and I haven't sufficiently stewed to be able to tell this part of the story without sending myself back to the sobs in which I spent the rest of Friday.

I have involved my broker, but it is looking like my doctor had a last minute dispute with this carrier and pulled out...AFTER the open enrollment period. (Dirty Pool! Foul! NOT Cool!) They have been messing with patients lives for a year now, ever since the merger.

SEVEN years I've been with this man. That's longer than my marriage lasted. Seven years I've adored him and depended upon him. In those seven years, I think the longest that I've gone without seeing him was 4 months, when we had just barely started lengthening out the period of time between exams, before my Stage IV diagnosis when I started seeing him monthly again.

And now it looks like I will indeed be interviewing new Oncologists. Something I've dreaded and never wanted to have to do, thinking I would be with this doctor to the end of my days. I made an appointment to see my Primary Care Physician next Monday to try and sort some of this out.

Goal for now? Not to fall into the sobbing dark place again.

Thursday, December 20, 2012

Any One of Us Could Go at Any Time

Contrary to popular belief, perpetuated by Hollywood and those trying to deny the stress of living with a disease that will kill you, the odds are very small indeed that you will ever be hit by a bus.

A sentiment that originated in use in the work place to mean "make sure your work is organized in a way that anyone could pick it up where you left off without further input from you" is often conveyed with the tongue-in-cheek comment, "If you were hit by a bus tomorrow, would we be able to pick up  your work load".  The hyperbole of phrase makes the idea stick on your mind while working, keeping notes, organizing paperwork, logging relevant phone conversations, etc.

that .gif is getting on my nerves now, playing over and over and over...

...but  I searched the web over to find it, so enjoy.

Or to borrow a better explanation I just found from guy in the UK in 2007, 

To highlight how dependent they might be on a key employee, businesses are often asked what they would do if that employee were run over and killed by a bus - and the answer would point out various problems for disaster recovery and business continuity planning issues.

I limped myself to a party a couple of years ago. In a conversation, which I did not start, about my cancer and prognosis, a friend's husband shrugged off my situation with the exaggerated idea, now misused prophesy, that he could be hit by a bus tomorrow. 

Wiki.answers and ChaCha, in their wisdom and infinite knowledge, offer that your odds of being hit by a bus are about 2 in 1,000,000,000 (that's billion, with nine zeros). 

While your odds of being killed by a lightening strike are staggering, at 1 in 2.5 million (rounded), your chances of being dealt a royal flush in poker on the first five cards dealt are a far more likely 1 in 649,740.

My point, in what turned into a long introduction to my actual topic, is that dismissing the fact that my disease will kill me with that stupid bus analogy is, well, stupid.

Now maybe when folks say this they are not actually being dismissive, but rather trying to comfort 

Hell, dismissive at  least; saying this to a person with stage IV cancer just minimalizes their situation, trivializes their fears, and is likely offered out of the unconscious self-preservationist need to steer the topic back to comfortable ground on the part of the would-be supporter.

Still not my intended main point.

I've really had on  my mind, for months now, a similar, though slightly less violent, idea about death.

A dear and long-time friend of mine was in a pretty severe car accident this year, resulting in knee surgery and physical therapy. She told me that while sitting in the SUV in the intersection, awaiting extrication after the accident, she thought of me. 

(Like you, at this point I was very touched.) 

She thought of me and how any of us could go at any time

Go in this instance being a euphemism for dying, not a confession that she had just soiled her underpants.

(I felt slightly crestfallen at this point.)

Percolating in my brain since then have been the differences between dying in a car crash and dying of cancer.

Dying suddenly and unexpectedly, vs. a long, drawn out, anticipated death.

Before I continue with what will surely be a metaphor that I will take to the very edges of that proverbial cliff and beat it to death before tossing it over, let me just say, emphatically, I do not  minimize my friend's car accident. It was scary, there was physical pain and damage, and was very possibly the worst thing that has happened to her, at least this year.

In a blog article I read this past month, or in a comment after it, someone talked about not comparing illnesses, or thinking ours is worse than someone else's. That has stuck with me and I am finally being able to work that into the practice of actual face-to-face conversations with people. Someone sits next to me in a church meeting and tells me all about her recent illness. That was a difficult thing for her. That was her current worst thing. She doesn't need to be reminded that I have cancer, and that cancer beats a flu in Illness Poker. The only place anyone should play Illness Poker is in a medical triage setting. 

I'll admit I have been guilty of working my cancer IN to a conversation when someone is being a selfish pain (IMHO), or has said something just plain weird to me. The other night at the Christmas party, as I was sneaking out early, an older gentleman stopped me and asked if I was "the one with the cardiac hypertension". My first thought was to ask if he was saying I was fat...why else would you ask a stranger that out of the blue. I assumed he was a member of the congregation, who, while he my not have known my name, should at least be aware of my condition, or at the very least, have heard gossip. Maybe I need to start some gossip.

"No, I am the one with the metastatic breast cancer"...I said in a friendly matter-of-fact tone. Sometimes I enjoy a little shock value, I admit it. He was there with  a friend, so did not know me, which still leaves his initial query in the ODD column. 

SO, as I launch into my Fatal Car Crash vs. stage IV cancer death scenario, remember that everyone has their worst thing, and should be given the same concern and empathy as someone else's worst thing.

It is my assertion that dying in a car crash is not the same as Stage IV cancer when it comes to preparing to face the Grim Reaper. Anyone can go at anytime doesn't really cover dying of cancer. Implied in that assumption is that while anyone could be killed in a car accident at any time, Stage IV cancer death isn't really that stealthy.

If it were indeed similar, with a Fatal Car Crash in your future,

...You would know that at some time you were, for a fact, going to have Fatal Car Accident.

But you don't know when. No one can tell you when. The doctors won't even hazard a guess, but will quote you lots of statistics. 

So, in preparation for that day, you take some extra driving courses, learn all you can about safe driving and how to get through the accident in as little pain as possible. You know there is going to be pain, and while you don't know where the pain will be for certain, it is on your mind ALL THE TIME. This leads to a certain amount of anxiety, which can range from slight to debilitating. 

And even though you are a Super Positive Person, you may feel depression creeping up on you. After all, you have things to finish, children to raise, futures to arrange...and you have no idea how much time  you have to do this. 

This is true of all of us, but for purposes of our scenario, let's compare it to putting all of those things off until you are 85. You may have 5 good years left, or more, but maybe not, and frankly, it could be over next year. You just don't know.

You still have to drive the car that will kill you. You notice that the doors are getting creaky and harder to open and close. It seems like the tires are low every-other-day. The get-up-and-go has, as they say, got-up-and-went, and some days you wonder if a push might not speed things along. You notice your arms are sore from opening and shutting those car doors, and that your legs hurt from the times you have to get out and push. You've got a headache from the exertion and the gas fumes, and your back is beginning to hurt from all the tire checking.

You go to have the oil checked monthly, sometimes weekly, for analysis that may alert you to clues that the car is getting more and more unsafe. Every 3-6 months, you take it in for a full diagnostic. 

So with your headache, sore limbs and backache, you realize that these things are not going to get better. There are ups and downs, but they are permanent residents. You know you're not the Lone Ranger when it comes to aches and pains, so you put on your happy face and make-up and go to your job and your meetings and your church functions, and most people have no freaking idea that you are positively headed for a Fatal Car Crash. 

You find a support group, of others with Fatal Car Crash definitely in their futures. It helps to talk with people who understand. Some of them, however, insist on putting a ribbon on it, and hold on to the idea that someone will any day now invent the Personal Force Field that will prevent all collisions. Meanwhile, they haven't even thought about what the day of The Crash will really be like. Thinking about it would be dwelling, and dwelling on it would be negative thinking, right?

You may have a little fender bender in the grocery store parking lot. "oh my gosh, this is it..." is playing on a loop through your brain. The little jarring the vehicle took shifted something around, and  you can no longer see over the dash. You must now sit on pillows which make you a) feel like you have the flu most of the time, b) lose a good percentage of your former cognitive prowess, and which c) make your hair fall out. 

How long must I sit on these pillows, you ask. When will I be finished with this pillow-sitting? 

Oh don't worry, if those pillows wear out, we'll give you new pillows. The pillows, and their side effects, will  be with you until the day of The Crash. Some of the pillows have lesser side effects, like constant joint pain and the feeling that your rump is on fire, sitting there on those pillows, but those pillows will wear out, and then you will get to the ones that make you lose your hair and feel like crap. I hope you look good in hats, because for as long as the pillows hold up, your hair is history. But don't worry, the next set of pillows will keep you bald, too. And give you  rash. 

You try to go on about life as best you can. You try to function in your capacities as an employee or mother or a wife. If you are a single person, you start resenting a little that you don't have someone there to help you keep that car going in the face of these new physical limitations. Eventually, you will have to leave your job to be able to take full care of this car that you know will kill you, and the side effects of those damn pillows. 

"Try to act normal, try to act normal" is your new mantra, as you limp into a meeting, on pain pills, using a cane. At your age; how embarrassing. How tedious.

Your car, meanwhile, gets a seriously flat tire. Bent rim and everything. You have to drive around on the doughnut spare tire, indefinitely, keeping your speed down and getting a new doughnut every 200 miles. This could get expensive. 

People finally understand that you are headed for some disaster, what with those pillows making your hair fall out. They are kinder, more polite, more helpful. Even though there were times when you felt worse than this prior to the pillows, the hair loss is the Universal Signal that something is actually wrong, and  you weren't just whining and faking before. 

Your next automobile diagnostic shows that there are some rusted-away parts on the frame. This makes the frame not as strong as it once was. You have to curtail some former habits and activities, always keeping that rusty frame in mind. Those pillows are your bane, and the pain they cause you gets worse and worse over time. Your hair manages to come back in when you replace the pillows with new and improved pillows, and you are now FINE in the eyes of your community. They forget that you have this Fatal Car Crash in your future, and wonder why you are so hyper-sensitive about things like windshield wiper replacement, that nick in your window from a rock on the freeway, and those solicitation flyers that seem to appear on the windshield at every store. 

You start to picture The Crash, and worry about how much it will hurt. Will your death be instantaneous, or will there be a long period of pain before you "pass". Will the doctors be willing to give you adequate pain medication, or will they wimp out about prescribing it because they will look bad, or because you might become an addict?

You're driving home from the grocery store. You've only purchased a couple of necessities, because no one is with you and you will have to carry them into the house when you get home. Between the cane and the constant pain, that's no simple task. You are going to try and bake though. You are thinking of how yummy those cookies will be, fresh out of the oven, when a big truck runs a red light and t-bones you in the intersection. 

This is serious. You are in shock and surely bleeding, and probably have a concussion. The t-boning pushes you into the oncoming traffic where you are hit, head-on, by an SUV, which smashes you and the car something fierce. The light changes and some idiot manages to clip the back of your car and spin you around, ejecting you from the vehicle. 

At that moment, you see that damn bus coming. 

Yes, you get hit by the bus, but you aren't dead yet. The bus doesn't realize you've been hit, or doesn't care,  and continues on it's route, dragging you along underneath. This really hurts. The bus stops every 1/4 mile, but you are unable to free yourself from the undercarriage of the bus, so the dragging continues. 

Is this how it's going to be? You thought a fatal car accident would *BAM* be over and done with. You don't see it coming,  you can't stop it, and it's supposed to kill you quickly, right? But here you are being dragged around town by a bus. You could be dragged around for weeks at this rate. 

The bus happens to be on a circuitous route, so eventually, you are back at the intersection where you were first struck. The bus hits a bump, *OUCH*, but you are finally ripped free and left resting in the street. You see your car being loaded onto a tow truck. You see the fully-loaded tow truck start to drive...straight for you. You watch as the tow truck, carrying your beat up and rusted out car, heads straight for your bruised and bloody body there in the street. 

As you lie there in your pain, you brace yourself for what you see coming, but tell yourself to relax and let go. At last, mercifully the tow truck brings the prognosis to fruition, and you have, indeed, died in a Car Crash.

The converse would be that if facing a death from Stage IV cancer were on par with an actual Fatal Car Crash, you wouldn't see it coming and would be dead within a week of diagnosis, if not immediately.

That's what I thought it was when I was diagnosed. The only people I'd ever heard of having Stage IV Breast Cancer had died very quickly. 

The reality is more like being dragged around town, for weeks, for months, for years, under The Bus that will eventually run over you and kill you. 

I don't know if this made ANY sense. It did to me, but it is now 3:00am, so my brain has likely been on auto-pilot for 2 1/2 hours.

Please discuss this post today and

for my next post, let's talk more about death. 

Let's talk about what we have to do to prepare, and how it feels to know it's looming, from whence it will come, without knowing when. 

Maybe after that I can track down some of the articles that have been written about what TO say to a person dealing with cancer. 

Though, it would be more fun to talk about what you want and don't want at your funeral, and if you're doing anything commemorative while you're still here to enjoy it

And what your thoughts are on that last few moments before you go.

Again, by go, I mean die, not take a tinkle. 

Monday, December 17, 2012

When People Actually Read Your Blog

WOW! I thought my post on Conservative Feminism would get some attention and stir up some comments, but my last post on 

MY list of things people say about cancer that bug ME

brought down the condemnation from (only a couple) the Positive Thinking School of Blowing Smoke Up...well, people who have partaken of "the pink kool-aid" (attribution to The Accidental Amazon).

Of course it only takes one or two detractors to make  me obsess.

Actually, my blog gets very little traffic that isn't directed here by cross posts, (thank you Nancy's Point).

(the links above are to awesome posts by the bloggers named)

I write because it's a therapeutic outlet for ME and possibly validating for women out there who feel as I feel. When I was diagnosed Stage IV, I felt so alone and booted out of the Survivor Club...I searched and searched the internet for info, for others in my situation, and for validation of my feelings. The feelings expressed in my blog profile paragraph are not something I made up last week because I was feeling "bitchy and ungrateful", they are exactly how I felt at the time of my Stave IV diagnosis. Those words actually formed in my head in the hospital after having the "treatable but not curable" conversation with my oncologist.

I finally found some validation from a group of women on a website with a category (I'm not thinking of the right terms...), a section, a bulletin board type thing for women with Advanced (Metastatic) Breast Cancer. I found women who expressed the things I was feeling, who weren't afraid to say how much this sucked, and who weren't afraid to look death in the eye and talk about it. 

I had muffins today with a dear friend who is local but whom I met through that website. We were discussing the recent prominence of the fluffy pink crowd, even among the women with metastatic disease. What happened to the voices that used to express what we were feeling?

A woman in Australia, whom I only knew by her screen name of "Flame", was my life-line. Her words validated and strengthened me. She was the first person whose words really touched me and helped me. She called a spade a spade, as they say. She sugar coated nothing. 

She died in 2010.

Laura was no-nonsense and realistic. 

She died in July of 2010.

Lisa was another who early on was a source of comfort and fortitude to me, who shared my views.

She died in January of 2011.

Barbie was so supportive and accepting of my snark. We would have 'aside' conversations, snarking about something that was said to the group.

She died in 2011 also.

Then there was Mary, who died in October of 2011.

And my dear friend, Kathy, whom I came to love though the internet and had the privilege of flying to visit last December, was willing to talk about death, and what she called her "exit strategy", who was more prepared for what we all face but few deign to accept than anyone else I've met. 

Kathy died in July of this year.

So where are the voices we came to love and rely on? So many of those women, from just three years ago, have died. I said to my friend this morning that there were about three of us from that original group of realists who were still here. The influx of the newly diagnosed has beribboned the site. I fear the kool-aid was passed around by the gallon to these women, and they all still had full bladders when drafted to the ranks of MBC. 

I say drafted because none of us joined up voluntarily. And I may have mixed some metaphors. 

Some of us have migrated away from that site, and wander around Facebook and the blog-o-sphere...

...which was rocked earlier this year by the death of our beloved Rachel, of The Cancer Culture Chronicles, whose tireless research and advocacy lives on in our hearts.

Where was I going with this? Oh yeah; there is turnover in this group. Heartbreaking turnover that makes one hesitant to form new attachments. 

And there is a group of voices who are greatly missed, and whose shoes have not been filled by the newly diagnosed. 

I am so thankful for Nancy's Point, and The Accidental Amazon, who "get it".

Over muffins this morning, we lamented that while we wanted recognition and dialog, we didn't just want a new color of ribbon. We didn't want a new shade of the same hype and denial. 

My muffin friend, K, just lost her hair for the third time. She is in a chemo regimen that leaves her cognitively barely functioning at times. She is raising two young children as a divorced parent, facing down Stage IV cancer as a single woman. She puts herself through the next treatment, and the next, to try to be around for those children as long as she can.She is trying to teach them as much as she can. I'm sure she would be fine with her son calling her a hero. He's a child. She's his mother. But if someone on the fringes of her life who barely knows her, and certainly isn't there to help out when she is feeling like crap, called her 'brave', I think she would rankle. 

In the comments on my last post, Ann, of But Doctor, I Hate Pink, wrote, "Brave isn't appropriate. Brave people have a choice and do what they are afraid of anyway - I have no choice."

And Holly G said, "Save it for the truly courageous battlers out there, like our military, the fire fighters and the police."

I've gone nowhere in a big rambling squiggly line with this. I'm sure the three people who regularly read will at least be amused. Those with their heads in the fluffy pink clouds should probably mark this as a blog they no longer need to read. Am I "bitchy and ungrateful"? Well, bitchy sometimes, maybe; hormone manipulation and chemo and 3 years of scanxiety is enough to leave anyone a little prickly. But hell, I wasn't shooting rainbows and unicorns out of my *** before cancer. 

Did I steal that from someone? Did someone else say it first? Probably. 
Speak up if it was you and I'll attribute the rainbows and unicorns appropriately. 

Ungrateful? No, I am not. I am very grateful. I am grateful to my mother, who will go to lunch with me on the days I actually have any money, and who would drive me to a doctor's appointment at the drop of a hat if for some reason I needed to be driven that day. I am grateful for Sujean, who brought dinner over the other night, for no reason at all, other than that she was thinking of me. I am grateful for Stacie, who comes over nearly every week, and chats, or helps me sweep the living room floor, or get the ice out of the bottom of my freezer that has the roast cemented in. I am grateful to my church organization, who makes sure I have groceries in the house, without whom our diet would not have a reliable source of protein. (I didn't say "meat", lest the vegetarians, vegans and cure-your-cancer-with-your-diet people jump all over that one.) I am grateful for David, who though retired and in the early stages of Parkinson's disease, climbed under my kitchen sink on the day before Thanksgiving, and spent hours reattaching the disposal and replacing a faucet. I am grateful to my sister and brother-in-law who helped me with car repairs. I am grateful to my son who does nearly all of the cooking in our house. I am grateful every day for a roof over my head, for food and transportation, and for heath insurance. 

But seriously, how interesting would my blog be if I only wrote about that stuff? I personally don't follow any blogs who write through rose-colored glasses computer  monitors. In a world of pressure to put on the happy face, with what Barbara Ehrenreich has referred to as "the tyranny of positive thinking", I prefer to face and accept what my cancer diagnosis really means. 

I don't consider myself to be negative. I consider myself realistic.

And if I'm grumpy sometimes, too bad.

If even one person like me, who is searching for support, finds validation in something I write, then, as they say, my work here is done. If another person is offended in some way by my attitude, to them I say, "walk a mile in my shoes". 

...which are Birkenstocks, no matter the weather.

I'm not claiming to be the Lone Ranger, but this metastatic cancer road is not paved in marshmallows, and my thoughts and feelings are valid. 

My thoughts and feelings are valid because they exist. 

Wednesday, December 5, 2012

My Top 10 Most Annoying Things People Say About Cancer

Inspired by a recent Huffington Post article by Nancy Stordahl of Nancy's Point (note my tech-savvy use of linkage only took me like 15 minutes), here are my personal TOP TEN annoying things people say about cancer. About metastatic cancer. To cancer patients.  I may not get to 10, and they may not be in true rank order, because ranking things really taxes my need to get things absolutely right. Absolutely correct.

In true Letterman style, let's start with number 10:

10. Anything with the words CURE, POSITIVE, or ATTITUDE, or BRAVE.

9. "You look GREAT!" ( it the surprise in their voices, or ignorance to the effects of cosmetics?)

8. "Being overweight caused your cancer." (Okay, no one has said this to my face, but I've read it plenty enough times!)

7. "Oh, you're on chemo?" (...while looking suspiciously at my hair.)

6. "You should eat ____,  and stop eating ____." (cure implied)

5. "Oh, this (obscure) doctor (of whom no one has ever heard or written) has a CURE and you just have to follow his protocol and buy his $400 machine! You should check out his website!" (...please never speak to me again.)

3 & 4. "You're not still dealing with cancer are you? When does your treatment end?" (special zingers for those with metastatic cancer)

2. "Cancer is a Gift" (...well I hope someone saved the receipt!) Thank you, Nancy, for writing this.

And the #1 most annoying thing I absolutely hate being told...

1. "Any of us could go at any time." (cousin to the Hit by a Bus scenario. and the topic of the rant that's been swirling in my head for weeks, the segue to which is the real purpose of this list.)

So what do you hate hearing about your cancer?