Saturday, April 24, 2010

Just really feel like using bad language...(subtitle: Welcome to Effingham)

Ever feel that way? Of course you do. The effing neighborhood is full of barking dogs. The effing neighbors are playing loud music and talking loudly in a drunken stupor. Effing raggedy little noisy kids screaming and running around.

I'm doing this on my effing own. I know people read, and care, but there is no one but me to get the mortgage modification done, to make those phone calls, to contract that bankruptcy attorney and gather all that paperwork. No one but me to be a bad mother to an 18 yr old who still can't clean up and who wrecked his bike again, twisted his ankle, skinned up his knee, hurt his wrist and now can't even get the weeds in the yard whacked down this week while the weather offers reprieve. No one but me to fully shoulder the worry and consequences should he fail to get that honors project finished or that English paper written, and should he lose all his credits and tuition waiver for next semester. This is what I didn't die for? To continue on in parental failure? To wallow through each day in depression and anxiety, a few decimal points short of needing to be on a watch list?

Oh, and now the effing noisy motorbike again; the one they rode up and down and up and down the street last night until well past midnight...

I have no husband for whom to stick around. No small children to finish raising and with whom to spend more time. Grandchildren are a long way off, thank goodness, so they aren't even motivation to keep going.

Shit. Just remembered I set my facebook up to automatically post blog entries. This sure doesn't belong there, and I certainly don't want my son reading this. I think he may be depressed, on top of ADD and barely-into-college teen-aged angst. I had to drop him from my insurance, because I am paying COBRA. I can't even take him to the doctor. Will his father step up if/when I die, if my son still needs to be parented? He sure hasn't shown the ability or desire thus far. I can't do much for him in my current condition, so I really am not seeing how not dying really was of much benefit.

Don't anyone dare say you would miss me. It's not about you missing me. It's about me hating this effing futile existence and wanting out. 20 more months in the countdown to Medicare. Anything serious comes up between now and then, tough shit. I'm not having any surgeries, brain radiations or seeing any orthopedic doctors. I'm not changing medicines or doing any chemos. Even if I do make it to that magical two-year mark to which the government is sure I'll live in order to see Medicare, I am not doing anything drastic to drag this crap out. So nothing better break. Effing bones had better hold up with this effing Zometa treatment. Effing CEA numbers had better stay where they are with Femara. If it spreads, it better spread straight to somewhere that will kill me fast, because I am not putting myself through treatment HELL to stay around and suffer through more of this effing life. This effing neighborhood. My effing disability qualifications, the effing guilt and the effing frustration, futility and daily funk.

Perhaps, as the anonymous internet comedian at some point said, my only purpose in life IS to serve as a warning for others.

If I thought skipping my Femara would be a speed pass to ending this effing mess, I would stop it tomorrow. I am not to the point yet where any speed passes are available, however.


Went to meet the woman who is using the photos of my bracelets in paintings! They are so beautiful! She's going to give me one when they are all finished!! Poor Ellen though; I cried on her shoulder, spilled bad life attitude all over her, and she'd just met me. Well I wasn't exactly in good shape when I left here to go meet her!

I do feel a little better now, for having verbalized it to poor Ellen. Haven't changed my mind about any of it, just no tears streaming down my face at the moment.

Monday, April 19, 2010

I've never even BEEN to Maryland

I've been plagued the past week or so by questions from my long-term disability company (through my work, not SSDI) regarding my continued disability. Seems their goal, over compassion, is to find a reason NOT to pay the disability any longer.

It started with a phone call follow-up last week to see how I was doing.

"Well, I still have cancer", I said.

A friend later suggested I might have told them that I am still dying from cancer. He wondered whether they were checking to see if perhaps a miraculous event had occurred, that perhaps I'd washed in the pool of Bethesda or something.

The call was followed up with paperwork for my doctor to fill out. A nurse called to check with me on the questions regarding how long I can sit, what I can lift, if I can reach, drive. The doctor assured me the other day that he'd do what he needed to do to show them I shouldn't even try to work.

I can't do my job. I couldn't do it right now even if I only had to work alone with no one else around. There's no way I could do it with the added pressure and stress of bosses, co-workers and clients. I'll never get back to where I was before my diagnosis and hospitalization. Not physically, not mentally or emotionally, not in my ability to cope. OK, those abilities were questionable already, but 8 months of treatments and fatigue and pain haven't improved those.

If this portion of my disability decided I was fit to work, I'd have to just lose their support. Apparently they'll torture me with these questions every six months, and then at the 2 yr mark, will evaluate whether I am able to do ANY job.

Maybe the 'cure' will be found by then. Yes, of course that was sarcastic. I won't hold my breath. I know they're doing their jobs, but maybe they could have a flag on certain files, to Google the condition first, to see if the prognosis is still, well, death, before placing regular guilt trips on the patient about being disabled and facing just such a prognosis.

Yes, there is the possibility of living for years with metastatic cancer to the bones. That doesn't, however, mean years of easy living. There is really no "improvement" or "rehab". The longer you live with this, the worse the treatments get, and the more damage the disease does without killing you. Hip replacements, spinal fractures, chemo, radiation, and eventually; spread. Spread meaning worse treatments, worse chemo, more radiation.

I'm still on the first tier of treatment attempts. I started Zometa last week, to shore up my bone strength and try to prevent fractures. Side effects? Fever, chills, and more bone pain. It's been a week since the first infusion, and I still feel worse than I did before the treatment. So far, my Femara seems to be holding up. I don't have to change yet.

There are only so many out there to go through. This should be good news. It doesn't feel as good when the Disability Insurance company starts the questioning.

Thanks a lot, guys, for sending me into the depression corner again.

Sunday, April 18, 2010

First Zometa Treatment

I have been guilty of shunning my blog in favor of the privacy of for all my woes. I know I should keep it up here, but I really don't feel I've found the right 'voice' for blogging. Oh well.

And now I don't feel like typing about my Zometa treatment (which netted me fever and chills), and will have to do so later.

I don't seem to be sleeping again. I don't know if it's because of the day I spent in bed ill after the Zometa changed my sleep schedule, disrupting my circadian rhythms, or what, but here I go again. Also for the first time in a long time, RLS has reared it's ugly head (PLM actually; a wholly-owned subsidiary of RLS). I end up getting up, doubling my magnesium, and hoping for the best. At this point (4:30am) it will be light soon, and a valium would be an ill-advised solution. I would sleep until 11:00 again, like I did today (yesterday - Saturday).

Thursday night I was awake until sun rise (about 5:00am), got up at 10:15ish to throw clothes on and take Brad to school. I bought a new bed with my tax return money; a memory foam mattress. Last night was my first night sleeping on it. Once I finally got to sleep, I slept well. It's just the falling asleep part that always alludes me. The alarm is set for 9:00am, so I can make it to church. I don't know how easy that is going to be, given the current hour.

I am left wondering if the insomnia and RLS/PLM are an added bonus to the Zometa side effects of aching and bone pain. Research time. The timing makes it suspect. Were the Pristiq causing the RLS, I would think that it would have done so at some point over the past three months, rather than conveniently waiting until three days after my Zometa treatment.

I do have things to write about. The Zometa experience, the Day of Art aftermath...I just have no cerebral power to do so.

Thursday, April 8, 2010

Day of Art at Banner Desert Medical Center

Twenty-four hours until my tax appointment. Am I ready? Almost. Should I be working on that instead of blogging? Probably.

Yesterday I participated in the Day of Art at Banner Desert Hosp, sponsored by the oncology department. I guess they do it twice a year. The paintings done at these events line the halls of the oncology unit in the hospital. I saw them when I was hospitalized in August, and thought I could never do something sparkly and positive, but really wanted to do something.

So I did. It is a version of what I worked up on the computer.

Every painting has a story underneath it on the wall, written by the artist. Hopefully I can find where it ends up being hung, and get a picture of it framed and on the wall.

Metastasis is the unpublicized part of this breast cancer ride. it is the part for which there are no parades, no pink ribbons, no feather boas, no emotional marches.

With the Stage IV diagnosis comes the feeling that one has been de-ribboned and stripped of the title of Survivor.

This is the dirty pink underbelly; the part that exists without glamour or glitter, where the only pink ball caps are the ones dropped in the gutter, stepped on and run over.

It is a dirtier shade of before, a bit soggy and cloudy, and for some of us, the new reality.

It is a cold rain on the pink parade.

Of course, since yesterday I have thought of at least half a dozen things I'd like to change, or do differently. That lovely trait would be why I rarely actually finish projects, decide on a color to paint my walls, and why I like the computer for scrapbook pages.

At one point when I started on the umbrellas, I feared they looked like pink pumpkins, then boobs. Thank goodness they turned out umbrella-y enough.

Mostly old people there, several people I knew from the support group, several with METS also. Later in the afternoon a couple of younger people came, and it always breaks my heart to see women so young battling cancer.

It was outside, in a garden area between buildings. We had very nice weather and shade most of the day. I had some help at the end with some of the shading. The counselor who facilitates the support group took pictures of each of us with our painting when we were finished. I'm sure that's a lovely shot, after being in the breeze and working and concentrating all morning. It started at 9:00am, but I didn't make it there until about 10:00am. They had a light breakfast, and then served lunch as well (yum!) I panicked a bit midway, worrying that I wouldn't be able to finish by wrap-up time (3:00pm), but I actually finished by about 2:30pm.

I got compliments on my painting, and said to the counselor, 'yeah, they haven't read the story part yet'...haha. One of the other METS ladies understood it though. The counselor said she was glad I did it, and that it needed to be said. I agreed, and shed my only tears of the day.

It's not all rainbows and puppies and pink ribbons.

The new image I have in my mind is being piled upon by all the things I have to deal with, that keep me from focusing 100% on the last thing in the pile; having cancer and taking care of me. That might translate more universally across the cancer lines. I'll work on that idea for six months.

Thursday, April 1, 2010


I am sleeping better.

I am walking better.

Some days feel better than others.

I may even look better.

But I will never 'get better'; will never 'get well', 'be cured' or finish treatment.

Stage IV cancer; treatable, but not curable.