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?

Sunday, November 4, 2012

is there such a thing as a conservative feminist?

I don't always title my blog entries, but do please notice the date, specifically the month. Yes, that's right; it's NOVEMBER! The pink insanity is over. Who is in line to be sexually exploited to new levels for November? Turkeys maybe. Though isn't it generally the Toms getting slaughtered for Thanksgiving? What,  some are HENS? AND they have BREASTS??? Surely time for some turksploitation. Fowlsploitation as opposed to the FOULsploitation of last month?

I actually have been wanting to write something about me. I know, I know; they're always about me, and my aches and pains and inconveniences. I mean about who I am, and to share some over thinking that I've done recently.

This pondering came up when I wondered the last time I wrote if I sounded feminist. And I had to think even harder when comments from the general public on a couple of recent articles revived the negative connotations that can attach to the word. You know, trouser wearing, cigar smoking, using the men's restroom, militant, never satisfied, always grumbling...

Wait a minute...militant may be just what we need. The opposite of pink and fluffy wearing feather boas. Not  being satisfied until positive change is made, and grumbling until it gets done, not about doing it, but about the nay-sayers and pinkers, the non-transparent charities, and those who continue to sexualize the disease of breast cancer, and women in general.

I think that sexualizing breast cancer does  the cause no good. I believe that the sexualization of women is something that we, as humans, really should have gotten past by now. Our foremothers fought hard for the right to vote. Our sisters in arms fought for equal pay for equal work. (still some work to do on that one, even in the White House.)

I believe that when discussing breast cancer the statistics should be reported as happening to women and men. (not vice versa- see the aforementioned last time I wrote) I was thrilled to see, very shortly after the wording of "men and women" stuck in my craw, that it seemed to have been stuck and spit out of the craws of many others. I was thrilled when, within days of my post, everything I read started saying women and men with regard to breast cancer. 

I'm not claiming that my little rant was the catalyst for that change, but I do believe that I was single handedly,  one encounter at a time, able to teach an entire group of commuters, over a period of time, how to properly and politely merge from a tricky on-ramp to the freeway. The group with whom I commuted had become safer and more polite by my example and tough love. It can be done.

That's what I choose to believe. 

So who am I? I am a conservative Christian. I am a Mormon, in fact; a member of the Church of Jesus Christ of Latter-day Saints. I don't wear my hair in a bun, and we don't all dress alike. Well, the men sorta do, but their options are more limited, fashionably speaking. We don't practice polygamy. There are those who label themselves feminists within the Mormon faith. While I relate to and agree with a lot of what they say, I'm not comfortable jumping into that label, even within a conservative organization. 

I'm not a right-wing extremist. That term is not synonymous with conservative Christian. I try to be tolerant of others, loving to all. I try not to judge others, because that's not my job in this life; my job is to love others. Jesus said so when he was here. I am not perfect at this, because I am easily annoyed and tend toward slight arrogance when dealing with stupidity, and indignation when dealing with meanness. I wouldn't be comfortable with the term Liberal Mormon, because, even though I might have some liberal views within the church, I am not politically Liberal, and therefore eschew that label as well.

I believe in the Constitution of these United States.

I believe that woman are created as equals to men. I do NOT believe that they should be treated the SAME or EQUALLY (see the men's restroom comment above), or even have the same responsibilities in some cases. Women can do anything a man can do, but we don't HAVE TO. Men still aren't having babies, and women still don't have penises. We are equals, but we are not the same. 

I am Pro-Life. Either the other pro-lifers in the breast cancer community are far quieter about it than I am, or I'm the only one. Any discussion this past month about breast cancer treatment, always moved to women's health, then women's rights, then inevitably devolved into the abortion issue. It is the hot-button topic of our time, which divides the masses. 

I am glad that Komen's funding disparities have come to light. That needed to happen. Their halo needed to be knocked a little further off center. But I'm pissed that it didn't happen until it came down (in a round about way, really) to the abortion issue. 

I worked for a woman once who was a little loony, IMHO. She did crazy things to me and sometimes really treated me badly. She called a surprise meeting with higher-ups to berate me for various things the Monday back to work after Labor Day, over which weekend I lost all my hair due to the chemo therapy I was currently on. It was my first day out in public, in my work place with no hair. She made me feel crappier than I already felt, on a day when I needed support. That wasn't the sh*ttiest thing she ever did to me, or to others, and she'd even done some ethically questionable things in the business. But the thing that finally took her down was a comment that she made to a coworker, not even with malice, that was construed as racist. That got her marched out of there without even a meeting or a disciplinary write-up. 

What about me? What about all the hell she put the rest of us through, for years? It apparently didn't matter, until hindsight, after pushing the social hot-button of racism.

The masses didn't believe those of us in the cancer community when we said Komen were no angels, that their practices needed looking at...until they pushed the socio-political hot-button of abortion.

I am Pro-Life. Being Pro-Life makes me anti-abortion. It does not make me anti-choice, as I saw pro-lifers labeled in an otherwise compelling article. I'm sure that same author would not appreciate being called "anti-life" any more than I appreciate being called "anti-choice".

Everyone has free choice, free will, the agency, or the right, to act as they deem appropriate or desirable. 

I have the right to choose to stab my neighbor in the neck with a screwdriver for playing loud music late at night, but that's not legal. It is my right to choose that course of action, but not with impunity.  

There are laws against actions that society has deemed unacceptable, dangerous, and harmful to others. When we choose to live in country, we choose to abide by its laws. That is not to say that citizens don't have the right to work to change laws, but breaking existing laws has consequences.

Laying tacks in that noisy neighbor's driveway behind his pick-up, so that he gets a flat when he leaves for work, will likely not be socially or legally tolerated. I'm hoping and dreaming that someone will invent a directional ray gun that will blow out thumping speakers, while concealing the identity of its user, and that a bill will be introduced and passed to allows me to legally rectify the noise in this manner. But until then, if I take that screwdriver, and instead of stabbing the SOB in the neck with it, I poke out the woofers and tweeters in his speakers, and kick his barking dog for good measure, the law will not be on my side.

I am Pro-Life. I believe abortion should be illegal. I believe that if  you choose terminate the right to life of an infant though abortion, not only do you have a dead baby and the accompanying moral ramifications on your hands, but I believe you have also committed a crime.

Neighbor with a screwdriver through his neck.

 Dog kicked for barking.

Aborted, and hence dead, baby.

All choices. All bad choices. All illegal.

I believe that teenagers should be taught NOT to have sex before marriage. The practice of abstinence avoids psychological damage, STDs and unwanted and unplanned pregnancies.

 I believe that young girls and boys should be taught to respect one another, to respect their bodies, and to respect one another's bodies. I believe they should be taught to dress in ways reflect that respect. 

A woman's body does not exist for the pleasure of men. Men (and I read this in recent comments on an article about the sexualization of breast cancer) think that women shouldn't dress provocatively if they don't want to be ogled and objectified. 

So why do they? Because they are socialized to believe that they need the approval of men, they are socialized to believe that their worth comes from being sexually desired. Oh, and because they can dress any way they darn well choose within the acceptability of the venue at hand (i.e. workplace vs. sporting event), so don't assume it's for your gratification, pervert guy at the end of the row.

So the question remains, is it okay for a woman to be valued only for her sexuality? Is it okay to treat her as an object of gratification? Women are socially condition to accept this from men. Men are socially conditioned this as acceptable. 

If you can see any truth in that, then you can begin to see the objection to the use of sexuality and boobies to sell breast cancer.

Society as a group seems to find it okay. They seem to find it fun, and useful. And they are losing sight of what feminists have been fighting for and saying for decades: that a woman's worth is not in her sexuality or the size of her rack, or whether she will let you (men) see them. Mormons have been teaching for decades that a woman's worth is not sexual, that her body should be treated with respect, that she should always be treated with dignity and respect.

Both groups need to work a little harder at seeing that principle into practice. When we push those principles at the root of society, when we stand up and refuse to be objectified, when we help other to see worth in a woman and not in her body, when we speak out against sexualization of a woman's disease, then the ridiculousness of campaigns such as "Feel Your Boobies", "Save Second Base", and "Save the TaTas" become more transparent in the unacceptability of the underlying message they pedal.

So who am I? I am a conservative Christian who wants to see women respected, I am Pro-Life. I'm not a feminist, though I share and respect many of the views espoused by those who claim feminism. Women are equal to men, and should be respected by them. Women should be respected by other women if they choose to pursue a career, or if they choose to raise a family. Women are capable. To be seen as capable, we must stand up and behave capably. We must value ourselves and each other. We must insist that we be treated with respect, by each other, and by men, at home, in the workplace, or in the club.

It's 2:00am. The pharmacy filled my sleep prescription with another manufacturer's generic. It does not work. I would have tossed and turned until about this time anyway, so, just like in the early days of my diagnosis, I turned to the computer. I still have 5 hours to sleep, assuming I fall asleep soon. I'll most likely wake in 2 1/2 hours to PEE, however, and I think I can safely blame the chemo and the extra water I am encouraged to drink. Many more nights of this and I will be back on that insomnia edge; a place I do not like to be. Monday I will see what I can do about getting my prescription refilled from a different manufacturer. 

I also don't do rough drafts, and do very little editing, except as I go. So I may do rough final copies. It is what it is. My back hurts, my disability insurance company is on my case again with the re-certification crap, to which I want to answer, "I STILL HAVE CANCER! IT'S STILL STAGE IV! It's not going to get better. In answer to your questions about the past 18 months, no one has found  a cure for cancer in that time period." Just one of the things stressing me out right now, contributing to my depression, likely to this foul  mood, and possibly to this insomnia.

Okay, I edited a bit. Now its 2:45. Thanks for reading.

Thursday, October 11, 2012

Personal Rant - Women and Men

Okay, so I said I wasn't going to write anything this month. We all know that Pinktober is irritating, and why. Lots of  good articles circulating this year.

Can I just take a moment for a couple of smaller things that are stuck in MY craw?

A big push this year seems to be getting the word out that MEN can get breast cancer, too. What galls me is that I keep seeing breast cancer patients now referred to as "men and woman". As in "the American Cancer Society's estimated number of men and women who will be diagnosed with breast cancer this year: 226,870. And the estimated number of men and women who will die: 39,510."

Seriously? Men have to step over women and get listed first? It's still a predominantly female disease, and since the awareness that men can be diagnosed, too, is recently becoming noticed, why can't we all say "women and men"? And if "men" can't handle being listed 2nd, then let's just say "people". It's certainly not anything against any men with the disease, but there, I said it; list it as "women and men" when writing about it. Please!

Wow, I sound like a feminist. (is there such a thing as a conservative feminist?) And I sound like I am tossing out sour grapes. And it's just semantics.

And yeah, metastatic breast cancer is getting the usual shaft this year. Unribboned, former survivors. Seems like the men diagnosed with breast cancer are often not diagnosed until it has metastasized. (I have no stats here, just an unscientific observation.) But they aren't being tossed out with the women with metastatic breast cancer...noooo...they are grouped with the socially acceptable Breast Cancer folks.

Maybe the inclusion of male statistics in the public view will help put a damper on the continued sexualization of breast cancer. Maybe it will help pale the frickin' pink. But men take over everything. I'm putting my foot down about them taking over (figuratively) breast cancer. Again, I don't direct this toward men with breast cancer. I direct this toward society and men in general.

I know there was something else bothering me...and now I can't remember what it was. Maybe it was that I recently saw the phrase "metastatic breast cancer survivor". What? No one survives Stage IV cancer! It's STAGE IV  cancer!

Maybe it was that a local DJ interviewed a friend about her cancer (which is metastatic) and then dubbed her "The woman who skipped her mammogram", seemingly placing the blame on her for her cancer. Like Komen's recent ad campaign, averring that "you are the key" to survival.

Maybe it was that mammograms don't save lives.

Or that a positive attitude or hard work or tireless endurance won't cure your cancer. It's kind of a dice-roll, in my opinion, that all comes down to the biology of your own personal tumor.

Pinktober is a sex-sells marketing behemoth. REJECT THE PINK! Donate directly to a reputable charity who supports research.

p.s. Peripheral neuropathy SUCKS! It's bearable during the day, but every evening I am back at the point of saying that I can't do this (Xeloda) any more! Every night I don't know how I will make it through the end of the week, let alone another cycle. And this is only my 2nd round. And I'm only 3 yrs in to this party. Have I passed the median yet? Every time I get close, it seems the median moves. I guess that's a good thing in the big picture.

Friday, October 5, 2012

Thursday, October 4, 2012

Tuesday, October 2, 2012

An ocean of pink positive thinking won't cure cancer.

Saturday, September 15, 2012

Miscellaneous Ramblings...

It's the time of the afternoon when, nearly every day, I feel bored, restless, and most of all useless and purposeless. And overly-emotional. Good time to get around to an update post?

Day 4 1/2 of Xeloda. The fatigue is starting to accumulate, which lends to the overly-emotional part I'm sure, but my feet are doing pretty well, thanks to my really awesome gel freezer cold pack thing I got from physical therapy three years ago. My biggest complaint today is headache and forehead pain. It's been going on for a couple of days now. Early on in my Zometa treatment, I had at headache at one point for a month and half. The pain is in about the same place that it is now. My forehead, though, feels like I ran into a corner face-first. (I actually have personal experience of this nature, having lost the vision on my left side as a child. Running into corners, people and walls was pretty common for me. Okay, sometimes I still cut it too close on that side, but this pain is on the RIGHT side.) It feels like a bruise, running from just above the inner point of my eyebrow upward to about mid-forehead. At the base of it, there is a small lump. If the pain didn't also radiate upward from where the bump is, and had I not has similar pain three years ago, I would assume I had one of those under-the-skin zit things going on. Those suckers can be painful! Since I know I have mets on my skull, but don't know where, of course there is the side of me that thinks it's cancer. The headache part feels familiar, and headaches are a possible side effect of both Zometa and Xeloda. The bruised tenderness thing is new. The little lump it new.

That was a huge paragraph to say "my head hurts".

We're nearing October. Brace  yourself. More and more bloggers are speaking up about Pinkwashing and the pink ribbon culture and the sexualization of breast cancer. Three years ago I felt no one was saying what I felt. Maybe I just hadn't found them yet, or maybe the word and the sentiments are spreading. (I almost used the A-word. Awareness.) Maybe I'm just getting lazier and lazier, but I don't feel like I have to try so hard to express what's wrong with the pink culture because so many great bloggers are saying it. Did I say the same thing a year ago? Well, it seems to be spreading more and more. I'm darn proud of that. I'm super happy about it. I'm so glad I can point to the bloggers who do all the hard work, that I can repost links on Facebook of all the wonderful articles they post and share, that I can add blogs to my blog role so others can find them, too. Sometimes, some issues get too political for me. That exhausts me. I'm more than happy to let others take the lead on those. I comment occasionally. I get really bent out of shape occasionally, too, but usually keep it to myself. I've been thinking for weeks about writing about how irritating it is for something to be wrong and not get any attention for its wrongness until someone trips on one of those politically correct or incorrect hot buttons, and then the wrongness is noticed, but not necessarily for the wrongness perpetrated up to that point. I experienced something similar, back in my professional days, and this recent issue brought the anger back up.

How's that for skirting the issue?

I think I'll chicken out and not write the post I've been contemplating for a couple of weeks. It would probably be okay, since so few read my blog, unless I post a link on my Facebook page, in which case a couple more people read it. I'll admit it, I hate getting shredded by opposing opinions for expressing my own.

This didn't take up nearly enough of my afternoon angst time.

Among my silly things (I know there's a better word than that for it) that bother me, especially in the afternoon, is where to sit. I don't know what to do with myself. The chair is not a recliner (I'm in the market for one), the sofa is only comfortable for so long, and if I spend too much time on my bed during the day, it isn't comfortable at night. The real problem is nothing productive to do. I should dive back in to my crochet and get somethings finished before the weather turns cooler. I have a lot of things to find homes for this winter. There's no use crocheting things that never get worn. Maybe when it gets cooler, I'll go over to my mom's house more often and spend time sitting out in her back yard, which is lush and beautiful in the fall/winter/spring and too hot to enjoy in the summer.

Back to the Xeloda...I want to gripe a little. Sure it's an at-home treatment, but the routine is getting tedious really quickly for me. Getting out of bed and eating breakfast at the same early-morning time every day is a huge thing for me. Then set the timer for 30 minutes and sit with my feet on the cold pack for a while, then take the pills. Really, it takes about an hour, and as much as the morning dose is hard because it's early, the evening dose tends to run into anything else I could possibly want or need to do. With the eat 30 minutes prior thing, and the ice pack on the feet thing, it's not just taking a pill, and really can't be done on the run. Not that I run much, but I'm not one with a regular routine. I start dreading the next dosing session. Then I start feeling restless and useless.

Oh, speaking of prescription drugs, I guess my big news should be that I am all the way off the pain med I was tapering down on. I haven't had any in three days now. I'm taking a different one, milder one, that hopefully won't cause the same reliance issues, but that will hopefully be a little better than plain Tylenol or ibuprofen to keep my pain levels down. I really don't have a lot of cancer-related pain right now, so knock on wood. I don't know what I'll do when the time comes that the pain is back.

So here's another thing...the literature handed out by my oncologist regarding Xeloda states that Xeloda "may lengthen how long a person lives by several months". WHAT? Time for some straight talk with the oncologist. How much does treatment really change the time we have? If it's only months, then the expense and physical toll are not worth it! My biggest worry, however, is fractures, breaks and collapse in my spine. With two hot-beds of activity in my spine, I need to do something about those. Is chemo the only option now that the hormonals have failed? The spot we radiated at my lumbar compression fracture / site of my vertebroplasty doesn't show cancer activity on the scan any longer. Is it worth the risk of side effects from radiation to zap the other two places? One of the activity spots on my spine is down lower in the lumbar than the was the compression fracture. I sure don't want a compression fracture or break down lower! That has nerve pain written all over it!

I got an assistance grant for  my Xeloda copays. The grant is good for a year, but is not enough to cover my copays to even the end of this year. After that grant runs out, no more Xeloda for me. Possibly no more anything for me for that grant period, because the grant is for anything related to metastatic breast cancer, not specifically for Xeloda. Is there a medicare plan out there with better coverage of cancer treatment than the one I have this year? (I have an insurance guy to help me.) The grant is from the same foundation that gave me grant money for Zometa. I think the lady at the financial department of the specialty pharmacy said the amounts could be combined, in which case, time to take a break from Zometa, and leave the funds for Xeloda. I wonder how many cycles Xeloda takes to show improvement in the tumor marker numbers or not?

Oh the things that occupy my thoughts constantly...

Tuesday, September 11, 2012

M-m-m-my Xeloda...

Who heard The Knack in their head when they read that? C'mon, raise your hands...

I'm back up from bed because my feet are being assaulted by thousands of tiny fire-hot pins...
Thousands of little blacksmiths 
are forging minuscule weapons 
at the foot of my bed 
and thrusting the tiny swords 
into my feet when they come
 out of the white hot coals.

No blissful falling asleep without knowing it...did I take my Ambien too early? Did I eat dinner too late? Is Xeloda going to aggravate RLS? Cuz my whole body feels edgy tonight. I hoped it would make me really sleepy and I would be sleeping more easily. It's only day .5 (since I started with an evening dose) this my regular crap, or my imagination, or is it all about to get a lot worse?

Sunday, August 19, 2012

Time for a little blog catch up. The pain meds titrating (or a word something like that) is going well. I was nervous about another step down, as I had a couple bad days with the last step. I did, however, step down right when I saw the doctor, and had Zometa treatment. In retrospect, that was probably a bad idea. But I waited until after my birthday this past week to step down another step, just in case. I think I did it Friday, and so far, so good. I'm getting very close to as low as I can go.

For anyone following my CEA, it was up again...over 180 now, jumping another 40 or so. It's been three months on the Tamoxifen, and those numbers say it isn't working. It is currently in Bonus Month time, a fourth month, and I have a little glimmer of hopefulness that something will improve. I quit taking all antidepressants about a month ago, and while the one I was on wasn't high on the Enzyme Interference list, I guess I can still hope for a difference. As I've said before, this is my last hormonal avenue. The next step is chemo, albeit an oral one first. It's still chemo. I see the doctor a week from tomorrow and if the tumor marker numbers show no improvement, he's going to want me to start the chemo. I think this fourth month on Tamoxifen is my hmmmm-ing and hawing month about it. We need to do something about those hot spots before a vertebrae crumbles or something equally painful. Or spread. I guess the rising numbers mean growth mode, and eventually a cell will hop from bone to organ. Since so very little research is done on metastasis, your guess on the mechanics of it all is as good as mine.

The thing bothering me the most right now is the numbness thing in my leg. My hips are out of whack I think, no surprise, and the Radiation Oncologist assumes there is an unhappy nerve. We can do an MRI to pinpoint, or I can keep doing PT exercises that I learned with the other hip in '08/'09, which seem to be helping a bit. I also have thigh pain along with the excruciatingly annoying and uncomfortable tingling, and increases neuropathy symptoms in my feet and lower legs. Oh, and aching legs, feels like bone pain, which may be weather / fibromyalgia related. Won't know until this monsoon season is over andthe dry heat dries back up. In short, my legs are driving me nuts.

Yes, I mentioned having a birthday. No, I didn't do anything fun, though I'm not sure I know what fun is anymore. That puts me just over three years since the stage IV diagnosis. I know I'm supposed to celebrate each year I'm still here, but for me, loneliness is a big factor, and that feeling of pointlessness. The only reason I feel to celebrate is that each year gets my son closer to that college degree that I really want him to finish while I'm still around. I don't trust that anyone else will see him through that if I'm gone.

Which brings us to that morose contemplating death kind of place that is getting more and more real. So let's skip it.

Signing off from my cell phone in's hoping my legs let me sleep, since I need to be up early tomorrow to drive the above-mentioned college student to school (no, he doesn't drive, and we haven't made a decision on the bus yet, since his classes are at the campus very near our house this semester.)

Saturday, August 11, 2012

My phone was running low on memory today and I had to delete some text messages to clear space. I deleted some from a friend with METS who recently passed away, and it made me sad. I also realized that I haven't seen anything posted anywhere from another friend with METS since June, and she hasn't responded to a text I sent her last week. I'm worried about her. We didn't talk all summer, kids out of school and all.

Friday, July 20, 2012

Turns out my brain was running a week ahead of my calendar. Today is not blood draw day, next Friday is.

Thursday, July 19, 2012

Day 38. I think. Two days into the latest dose-drop. I'm down to 15mg. Have not had a good couple of days. I think the antidepressant I've been taking that hasn't bothered my legs before is bothering my legs. I cut it in half to see if the legs get better. The worse thing in the last couple of days has been this crippling anxiety I wake up with. Early early in the wee hours of the morning, I wake up like a child afraid of boogie man; you know, how you curl up in a ball and don't move a muscle. The idea of getting out of bed and facing the world  (even the living room, for that matter) is terrifying and I get those jumpy feelings in my stomach. By yesterday afternoon, I felt better, but it happened again this morning. I haven't been crying so much lately, but this terrifying anxiety feeling SUCKS! Again, I'm feeling like I will never get through this down-dosing, and fear that I'll get through it and things won't get better. What if it's the Tamoxifen? What if I'm just going crazy? What if my legs don't stop hurting? I hate it. I need to get through it. It needs to be over.

PET scan results were good. SUV rate up in several spots, but no new spots noted and no spread to organs.

My dear friend Kathy passed away this week. She had been in hospice for several weeks. She was prepared and I felt peace at the news. She had stopped treatment (liver mets) in December. Her doctor had estimated 3 months, and it was 7. Thank heavens she wasn't in a lot of pain, and was comfortable at the hospice where she was.

I have a blood draw tomorrow,  and oncologist appointment Monday. I think he'll be okay waiting longer on Tamoxifen results given the PET results.

Saturday, July 7, 2012

19 days into the pain med reduction regimen. 4 days ago I dropped the dose down another level. I'm doing okay with it; nothing is worse. Things aren't actually better yet, so I'm still thinking I will need to get completely off of it. I am also wonder if Tamoxifen has anything to do with the anxiety and depression, though it hasn't started changing any tumor marker numbers, so it may not be working. And I really hope my pain levels are bearable as I reduce this pain medication. I may try the next drop at a two week interval.

At my doctor visit this week, we thought I had been on the Tamoxifen three months already, but as I'm looking at my calendar, it has only been 2 months. My tumor markers rose more (CEA to 140 - remember, it's the trend that counts) this month, but I think I can safely give the Tamoxifen another 2 months before my doctor will start nagging me about Xeloda or Gezmar (? Gez something).

For anyone keeping track, Tamoxifen, while generally a first line option, is my fourth in line hormonal. Fourth and last option before diving into chemo. I don't know if I want to. How long really can living with side effects from the chemo extend my time?

I had a PET/CT scan done yesterday. I will watch my phone for the next few days (starting Monday; scan was on a Friday...a long time ago I swore never to do that, but it didn't even cross my mind this time). The doctor will be willing to give Tamoxifen more time if the cancer is still contained in the bones. Something is going on, based on the rise in the tumor markers over past six months or so, so the scan results will be interesting. Yes, I have a disc, and they look pretty much the same as the last one. But no, I don't know how to read them, so it's really just an addition to my collection rather than a piece of useful info.

A big issue for me right now is loneliness. I face all these issues ultimately alone. I have no partner to help deal with insurance and bills and decisions. I talked to a fellow stage IV patient at the doctor's office about an insurance issue going on right now, and she wasn't even entirely aware of it...implying that her husband dealt with all that.

(The insurance issue: Banner Health has dropped my doctor's office from its contract. In short, they are dropping all community practices to force anyone on a Banner plan to use the oncologists at MDAndersen at Banner Gateway. Should have seen that writing on the wall. I am now faced with getting a continuation of care processed after the 18th and before my next appointment, or changing my Primary Care Physician to get off the Banner network. I want off the Banner network. I don't want to change PCPs.)

Loneliness. I feel the future and ultimate cancer crap sneaking up on me and I know that even though I have family near (sisters and mom) and my son, I am ultimately in this alone. I'm in charge of everything. Today I went on a day trip up north for an anniversary party for an aunt and uncle. My sister drove, and another sister, my mom and I rode with her. It was so nice for that portion of today to feel like I had turned everything over to someone else. I just had to be along for the ride. I really wish that in my LIFE I could, at this point, just be along for the ride.

My son does so much for me. I've realized how much I depend on him just being with me, as Sunday comes around again, and I realize he's not going to church with me, as he has started attending the Single Adult congregation. Good for him. Really hard on me. Hard for me to go without him.

While loneliness if my big depression issue right now, my son's future is my biggest worry issue. Thank goodness he is not a small child with a mother facing this, and my heart breaks for those who have small children in this situation. But I don't think I will be around long enough for him to graduate from college and get on with his life. If I died tomorrow, he would not be ready to be on his own. He has never had a job. He's struggling through college. I worry about affording his medication (for ADD) that will allow him to get through college. If I died tomorrow, or in a year, would his father step up, and take him in, and make sure he has what he needs to finish college? I don't trust in that. I really REALLY feel I need to be around for him to finish college and  follow his dream  to go and teach English in Japan. Maybe that means I am going to have to suffer through chemo side effects long enough for him to finish school. Getting him graduated is going to be  Herculean. I see it being iffier if I am not in the picture.

Sometimes in the middle of nothing I just burst into tears over this.

Hour to hour is my battle with this depression and anxiety.

Monday, June 25, 2012

Day 7

It's day 7 of the first dose reduction. Feeling like it will take forever to get out from under this, until the pain pill need is no longer causing crippling anxiety and depression. One day I am feeling positive about it, and the next, stress and worry piles on and the light at the end of the tunnel seems sooooo far away.

Friday, June 22, 2012

Day three...

I found out, reading things on the web, that another med I am on can have side effects and nasty withdrawal.  I've been on it for a while, since before the hospital, and I am thinking it may ne responsible for some of the leg muscle stuff. I looked up side effects Tuesday night, decided it wasn't working well enough to risk it, decided to quit it, then looked up withdrawal Wednesday night...yikes. It can be bad. I'm freaked out a little by the decision, and haven't decided what to do yet. I'm about a day and a half off it.

I did decide not to sit on my pain meds dose. The strengths that I have can be split to reduce the dose by 7 1/2 mg. I wanted to do 5mg, but decided to try the 7.5mg reduction and see if I make it to my doctor appointment and how I feel. If I am doing okay then, I can ask him to write for the next step down.

Today was day three. I had some anxiety today, and a few tears. I feel okay now, getting into bed. I hope it doesn't get worse than this.

One place online was a chat board with lots of anecdotal info on withdrawal from certain prescription drugs, abused or not. It certainly is a good source for possible withdrawal symptoms, but a lot of the posters seem to have been or be going through some serious withdrawal, some from high or long term prescribed dosage, some addiction. It didn't seem like they were seeking a high or recreational use, but prescribed doses got them to the point of dependence and withdrawal.  It kinda creeped me out. Doses were prescribed higher than mine and over long term, and I want to get out before I'm in that deep.

One of the drugs in my arsenal, one I took for a couple of weeks then dropped, is a dopamine agonist and the addict board mentioned this as a bad combination with opioid (sp) withdrawal. I actually should probably go there again and make some notes before I see my doctor.

Another step I'm trying to may, six months into a year of being eligible, is to use my Silver Sneakers membership at the gym nearby. Someone I know teaches the movement and motion aquatics class three days a week. I think that would be good for me. I finally worked myself up to going doen there and signing up on Wednesday.  The young man helping me behind the counter couldn't find my name in the system and sent me away with a phone number to call. I called when I got home, they found me right away. She put me on hold and called the gym, and this time the gym found me right away. The guy helping me had apparently typed in my birthday incorrectly (this was the only piece of info he had to type) and didn't have the skill, presence of mind or common courtesy to verify, with standing in front of him. I hope I don't get him when I go in tomorrow. I'm going to try tomorrow. I have to also call a number there my friend who teaches there gave me to get a cheap 3-month pass for my boy while school is out and he has no job. I can use his help getting there, and he can use the exercise. So hopefully I can get up and get myself psyched up to make that call and go back in again.

How do people cope with the twilight years, of death approaching? How does one get on with life when it's getting late in the game, especially when mobility is affected?

If I get off this pain med, my mobility may be further limited by increased pain. I think that is desirable over the anxiey and sobbing and worrying over things that could happen in a myriad of hypothetical situations and events. If I get through this, I will never want to cry again, and people will wonder why I never show emotion.

Fingers crossed for phone calls and Day 4.

Sunday, June 17, 2012

Whiner alert...

As I mentioned briefly in my last post, I am convinced that a dependence on my pain meds is to blame for mood swings and depression.  I thought that staying on a regular dose to avoid the black moods was good enough. I'm not happy though, with this control that this has over me, and how precariously I sit at the edge of unreasonable depression.

I woke this morning and took my usual dose. Unlike weekdays, I could not go back to bed and sleep off that first dose, as church meets at 9:00am. So not only do I struggle to stay alert during the meetings because of the pain meds, but also because I am shorted 3-4 hours of sleep from my usual schedule. I came home so sleepy, I took a three-hour nap. I slept through the time for my midday dose. I was so sleepy feeling even when I awoke that I didn't want to take the full dose and need to sleep again. I took half. By late evening I was feeling the anxiety and unreasonable depression scratching at the door. I took my night dose about 3 hours ago, and I still feel on the verge.

I can't stand it. I have other reasons to be depressed, and even other medication that could be a culprit (see possible Tamoxifen side effects), but the connection to the pain meds seems undeniable to me when I can feel the panic mood coming on if a dose is late, or if I take less. I have to get off this pain med.

The idea is frightening.  The intensification of these moods, crying uncontrollably, feeling trapped, out of control and helpless, terrifies me, but being so controlled, and not infallibly, scares me as well.

I should have pushed the issue with the doctor, but when he didn't have a problem with the dose I was on, I let it drop. I had cut the dose from where I was post-hospital-stay, and didn't have noticeable problem with it. I thought he had been concerned about that prior dose for long term, and he is okay with this new dose. I do need it for pain. I don't want to go back to the pain levels I had right before and after that hospital stay, but this emotional / mental thing is unacceptable to me.

I know I can't reduce by half and be okay, so I want to try for 5mg at a time. I don't want to wait two more weeks until my appointment, which means I need to try to call the doctor and ask him to write a prescription for a reduced dose.

One of the recent unpleasant changes at my doctor's office is the phone menu. They no longer have the option to leave a message for your doctor or nurse. I don't know what they were thinking with that one. The only option is to hold for a really long time for the operator.  I didn't make it to the operator the last time I called because the hold was too long and I have up. When I asked someone in the front office about it at my last appointment, she gave me an extension number to try the next time. If I feel like I can't wait for my appointment, I will try that. It's not a solution for the staff being unreachable though, and if that extension doesn't work after working myself up to making the call, I'll be really upset. That's why I may try to wait, and talk to the doctor about it face to face.

Another thing really bothering me right now is this pain and weakness in my legs. I first noticed it during my radiation treatment, right after my hospital stay, but it has gotten worse and longer lasting. When I stand up to walk, there is a tingling and extreme discomfort in my thighs, like after a serious aerobics class or a run (thinking way back for that comparison!). It's gotten worse in the past couple of weeks, to the point where I can't stand much at all and the tingling trembling feeling doesn't entirely go away when I am lying down even. I think this could be a side effect as well, to either the pain meds or Tamoxifen, but it started before I started the Tamoxifen, so I think it's off the hook. Another reason to want to get off this pain medication.

I understand severe depression more now. I understand the warnings on medications about suicidal thoughts, and how something can artificially hijack how you feel, and why someone might take drastic measures to escape it. I just want it all to stop - the legs, the mood, the sleepiness. I know how chronic pain can wear on you and cause depression, but this is worse than what I have experienced along with chronic pain. I need to get out from under this.

Thursday, June 14, 2012

No one to talk to...

Well, it feels that way a lot of the time. Especially at night. I put off blogging my feelings, even though this blog is about how it feels, fearing that my blog will devolve into a whining journal. If I look at the blog as just for me, a place to vent and dump emotions, then I guess I'm okay.

My tumor markers continue to rise, the CEA having crept toward 40 in the months we gave Faslodex to work , then 70 and now over 100. I've been on Tamoxifen now for less than two months; only a month at my last blood work, too soon to see results. Two months will probably be too soon as well, but I think I will not be able to avoid being hopeful.

I continue on Zometa, and send strong thoughts to my vertebrae, hoping against the odds that the degeneration of my spine can be halted.

I've come to the conclusion that the pain meds I take are responsible for painfully morose mood swings. I had tried cutting back and after weeks of uncontrollable sobbing, it came to me after much prayer that it could be a dependence issue. I went back to my previous dose and the crying jags subsided. Thank goodness, but I don't like the idea of it. I want to taper down more slowly, until I can get off completely, and use something else, which probably wont be as effective. Perhaps pain levels will not allow this. I don't know.

I've taken to using the walker instead of canes. I need the support and stability. Of course I hate my nursing home basic model walker, the kind you generally see with tennis balls at the ends of the legs. I refuse the tennis balls this time around. This kind of walker isn't really for indoor/outdoor, and rough surfaces can be difficult, not to mention hard on the caps on the legs. I've mentally accepted that the walker is probably my new norm, so I'm hoping soon to get one with all wheels, no legs, and hand-brakes. I'm leaning toward one of the three-wheeled models. Saving my pennies.
The car had problems this month, and long story short, ended up needing a new alternator. Ouch. But it could have been worse; at least the car is back in commission. Financial help came from an unexpected source and made it hurt less. I am so grateful for that assistance and thoughtfulness.

I'm typing this on my phone, which takes about four times as long, and I realized that I've only just made it through prefacing remarks and catch-up. I've not even begun rambling on about pain and death, and everything encompassing those topics in my life. Then there are the feelings of loneliness, helplessness, uselessness and ineffectiveness. I was going to try going to bed early tonight, but thumb-typing has drawn it out to the regular up-too-late bedtime that has my daytime schedule skewed.

I didn't solve anything or author any wisdom, but I feel oddly comforted by this sharing time with my smart phone.