Bureaucratic Bull

Edit #1  9:30 AM: My oncologist has decided to tell play Sloane-Kettering’s game and tell them that he has STOPPED treatment in order to get me an appointment. Of course he is NOT stopping treatment in the mean time. I hope that I will find out later today that I have a concrete date to go to S-K.

My PCP called me at 9:00 am this morning and told me that they have called the insurance company to have my case re-opened. The insurance company told the PCP that it is now “pending” re-certification.

None of these entities understand that my cancer doesn’t care about polices, rules or regulations. That’s the bottom line.

Edit #2:  As of 11:30 AM I have an appointment at Memorial Sloane-Kettering on 7/24/2008 at 1:00 pm!!!

I’ve come to the realization that our health care system, no matter where you live or who you are, is completely fucked up. I used to think it was the government that was a bureaucratic nightmare but yesterday proved to me that health care might just have the government beat by a mile…or two.

Do I need to repeat that I have a rare cancer? Must we go over this again and again? I feel that I go over it over and over with the same people.

“What kind of cancer do you have?”

“It doesn’t have a name, it’s a rare cancer.”

“What kind is it?”

“No one knows.”

“What do you mean by ‘no one knows‘?

“Just what I said, no one knows what kind of cancer I have because it’s a rare cancer no one has seen before.”

The conversation just goes down hill from there because now the health care professional doesn’t have a box to fill, a radio button to click or enough room in the “other” box to write it down. That just pisses them off.

The appointment I was waiting for from Sloane-Kettering? Well, it’s not going to happen. First I received a call from my oncologist’s office informing me that S-K didn’t accept my insurance. I straighted that misinformation out. Then I received a second call from my oncologist’s office informing me that Sloane-Kettering refuses to see me now because I’ve gone through two rounds of chemo.

Well, that’s what the scheduler at Sloane-Kettering said and she is sticking to her guns…REGARDLESS of any PREVIOUS conversations that went on with a doctor, nurse or anyone. That scheduler REFUSES to make an appointment because there are RULES she is sticking to. Oh, and trying another scheduler…didn’t work either because she was onto the oncologist’s office.

Bureaucratic red tape bullshit.

So the scheduler at my oncologist’s office gave up!

I told her to talk to my doctor and make something happen because this was all in the works a few weeks ago.

Then there is the insurance company. Another cog in the wheel of the dysfunctional machine of health care. They had assigned me a case worker because I have cancer. I was diagnosed again on March 31, 2008. They closed my case on April 18, 2008. Wow, that’s the fastest cure I’ve ever heard of. WTF?

As an insured “member” I’m not allowed to open a new case. Hello? Who is the one with cancer here? My primary care physician a.k.a. the PCP has to call the insurance company and tell them I have cancer again. Then he has to request that I have a case manager.

Don’t these people read the claims? WTF?

Do I need this kind of stress? How the hell am I supposed to get the care I deserve? I mean, am I going to live long enough to get the care I need, the care I deserve? Am I going to get past the bullshit schedulers at every hospital or get denied because they have pre-set rules that they aren’t going to budge from?

I’m at the end of my rope with health care…AT THE END OF MY ROPE! I really want to live but the stress and denial of health care is going to be the thing that kills me in the end.

Why…

The shock of unemployment becomes a pathology in its own right. ~Robert Farrar Capon, “Being Let Go,” New York Times, 5 August 1984

I’m currently embroiled in a nasty conflict between the Temp Agency I was working for and the PA Unemployment IC that has me so frustrated that if I still had hair…I’d pull it out.

I was let go from my assigned postion on May 30, 2008…due to no fault of my own. The assignment ended and I left with a Letter of Recommendation.

I called the Temp Agency on my last day of work and inquired about available positions. I was told there were none and to call back the following week. They recorded that they sent me on an interview for a Customer Service Representative position on May 30, 2008 and that I refused to take the job.

When I filed my claim with PA Unemployment IC I was denied because the Temp Agency told Unemployment I REFUSED WORK.

It’s been a back and forth, he said, she said, stressful battle between all both parties for the past three weeks and I’m frazzled.

I filed the necessary paperwork with PA Unemployment IC and now I have to wait.

I keep calling the Temp Agency, documenting EVERY SINGLE CALL, and leaving messages. Only when I left a message for the Temp Agency’s OWNER did I get a return call…however this week I’m getting bounced around AGAIN.

I’ve threatened the Temp Agency with an ADA discrimination suit because they are aware of the fact that I have cancer and I fit the criteria of having a disability under the ADA guidelines yet they are refusing to place me in a job when they have available positions. I know my rights and I’m familiar with the Equal Employment Opportunity Commission.

But why? Why does it have to come to all of this? Why do people have to be so stupid, so idiotic and so daft? Why?

Edit: I’m asking why in the rhetorical sense out of utter frustration in a system that I seem to be powerless in. I’m completely and utterly frustrated. That’s what I wish to convey. Not that I’m actually questioning the idiocy of a Temp Agency and PA Unemployment IC.

I hope that my frustration is what comes across…LOUD AND CLEAR!

A Woman Without A Flag

We have no right to ask when sorrow comes, “Why did this happen to me?” unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

How do I write this post without it sounding like a sob story? I certainly don’t want to sound dramatic but at this moment, this very moment I feel as if I’m going to lose it. Completely lose it. I’m about five seconds from having a nervous breakdown. Thank God it only takes about 30 minutes for the Xanax to kick in.

Yes, I am taking tranquillizers. You would too if you were me, I’m pretty sure of it and certainly if after the visit I had with my doctor on Friday. It’s going to take a heap of healing yoga AND tranquillizers for me to remain calm. I don’t believe that I have that much inner sanity left. Perhaps I do, but at this moment I’m finding it difficult to channel it.

My sanity has left the building. Should you see it, please send it home.

(Dude is testing the remain .5 ounces of it by incessantly banging pots and pans in the kitchen…please tell him to stop before I go ballistic…thanksomuch.)

Breath in. Breath out. Breath in. Breath out.

O.K.

I realize I probably sound like a deranged lunatic but bear with me because this is just outrageous and unbelievable…at least to me.

Something I try NOT to do in relation to my illness is get all technical and medical because it’s not necessary. I get the information from my doctor and educate myself thoroughly so that I’m on top of my game and so that I understand what they are saying to me. I do LOTS of research. It’s all part of MY game plan in this fight.

So far, so good.

Everything was pretty cut and dry up until a couple of weeks ago when the doctor told me I had a rare form of stomach cancer. I felt relieved that there was an answer to the mystery puzzle we were trying to solve and that I finally fit into some kind of cancer “category”.

I also felt like I had a new color, a new ribbon and a new flag…

For four years I’ve had a teal ribbon awareness flag in my garden in support of ovarian cancer awareness. I’ve spoken to at least 100 women, if not more about ovarian cancer. It’s been my flag to fly. Two weeks ago I took down that teal flag and replaced it with a periwinkle ribbon awareness flag…periwinkle, the color of stomach cancer. My new flag to fly.

Then I went to see the doctor on Friday and he had the written pathologists final report.

This is where I break my rule of being all technical and medical…just this one time and only this one time,

“The overall impression is this is a cyst papillary adenocarcinoma of unknown primary that could very well represent a primary urachal carcinoma or a carcinoma derived from other embryonic rests in the region. It is the opinion of this pathologist that the two processes, though they may be related in some distant way via propensity represent 2 different primary processes.”

Edit: I also have a CEA marker that measured 57.8 and a C125 marker that measured 318. The CEA marker would indicate that I have colon or gastric cancer. The CA125 marker would indicate that I have a reproductive cancer. The two together indicate that I have something rare in correlation with the pathologist’s report.

So, what does that mean? It means that I have a very, very, very, very rare cancer that no one has ever seen and no one knows how to treat. And there is a reason I’ve put all that information in this post. I’m hoping by some freak chance a rockstar oncologist or rockstar oncology researcher is going to search the Internet looking for THIS CANCER because they have the answers I need, the cure I need.

In the meantime I’m searching for a rockstar oncologist. I’m hoping that I find him/her in New York City in two weeks. If not in NYC, then maybe in Boston. And GOD, please tell me there is some foundation out there that helps people like me, who have been laid off, denied unemployment and cannot collect Social Security…with funding to travel.

I’ve never asked “why me?” but c’mon. Why? How do I make sense of this? How do I get the doctors to stop saying, “I’m sorry, I’m so very sorry.” How do I get them NOT to give up on me?

Am I suppossed to come to terms with the fact that I’m going to die? Is that what I’m suppossed to do now? I can’t do that. I cannot walk around with my heart in my throat when I look at my two children knowing the clock is ticking and that every moment I have with them is a “last moment” because that’s where my heart is right now.

Fuck me, I don’t even have a flag anymore. Exactly what am I suppossed to do with the new flag in my garden now?

Love Triangle #99

More marriages might survive if the partners realized that sometimes the better comes after the worse. ~Doug Larson

Over the past week I’ve seen some pretty ugly events amongst a group of bloggers and I find it disheartening.  Some people are going to think I’m talking about the infamous love triangle.  No, it’s the reaction to triangle that I’ve found unbelievable. 

I’ve read posts by bloggers who have gotten on their moral high horse and proclaimed that all adulterers are sinners who we should burn at the stake.  O.K. they didn’t say we should burn them at the stake but pretty damn close.  It’s true that adultery is a sin however I’m not a Christian so I’m not sure what the exact ramifications are according to the Bible.  I guess you go straight to hell.

That’s not my point though.

Sometimes people make very poor decisions.  Or they make decisions based on high emotion without thinking about the consequences.  It’s called human error.  Remember we are humans, right?  Cheating on your spouse isn’t right in fact it’s the worst crime you can commit in a marriage. 

I’ve been on both ends of adultery.  I’ve been the spouse who has been cheated on and I’ve been the spouse who has cheated.  The spouse who cheated on me left me for another woman…who made him miserable so the stupid son of a bitch took his problems with him…he was the problem.  The time I was the spouse who cheated was in my marriage to Dude.

Yes, I’ve cheated on my husband and I’m in no way proud of it.  Seven years ago I had an affair and when he found out he threw me out of the house.  Dude took our kids away from me, changed the locks on the doors and closed our joint bank account.  I had nothing but some of my clothes and my car. 

I didn’t see our children for months.  I missed Teenie’s first step.  I missed Teenie’s first word.  In fact I missed a good chunk of her time as a baby.  I got what I deserved.

My circle of friends crucified me though.  They turned their backs on me and judged me deeming me as a bad, morally defected and horrible person.  Thank GOD they weren’t all bloggers because my name would have been all over the Internet…they had that much to say about me.  They also never spoke to me again. 

An extramarital affair cost me everything…my husband, my children, my home, my friends and left me without any where to live…and left me penniless.  I was a stay-at-home mom so I had no job.  I got what I deserved.

I’d also like to add that while I was having an affair I felt incredible guilt, sadness and depression.  I wasn’t having a good time fucking someone else.   In fact I was so trapped in depression I attempted suicide at one point.  The affair was just a symptom of what was wrong with ME.

Dude and I repaired our marriage.  We got back together nine months later and rebuilt the trust.  We rebuilt and redesigned our relationship from the ground up because there were so many things wrong.  We’ve had our rough spots like every marriage but I know I’m one very, very, very lucky woman.   Seven years later the affair is in the past.  Seriously, it’s part of our past.

So go ahead and judge me.  I don’t really care because if you think I’m the most horrible person in the world because I made an incredible stupid decision seven years ago, paid dearly for that poor decision and have a spouse who is incredibly forgiving. Have a great time on your moral soap box.  The only person’s opinion that I care about is Dude’s.  

I know how lucky I am that I have a husband who today understands depression, who forgave me for what I did and loves me for who I am. 

Can you really judge a situation if you aren’t in some else’s shoes?  I mean, really.  Do you now think less of me because I had an affair seven years ago?  Am I a sinner?  Am I going to hell? 

Oh, and before you tell me I need to find God because I stated I’m not a Christian let me clarify that I’m not a Christian in the sense that I practice an organized religion.  I have not read the entire Bible…just tiny bits and pieces because I grew up in a predominantly dysfunctional Jewish household, well sorta.  That’s just a post for another time.

Forget it if you think my problem is that I need God in my life.  I have a relationship with God that works just fine, thanksomuch.

Could we just stop all this moral judging and let the people who need to heal, heal?

I Refuse To Work

Unemployment is like a headache or a high temperature - unpleasant and exhausting but not carrying in itself any explanation of its cause. ~William Henry Beveridge

A few weeks ago I was laid off from my job as an administrative assistant. It was a banner day because it was the same day I found out I have a rare form of stomach cancer. I felt like throwing myself a fucking party but instead I called the temp agency that placed me at the job and asked what other positions they had available. The person I was working with told me she had no administrative assistant positions but she noticed I had “customer service” experience.

STOP RIGHT THERE…

That’s exactly what I told her. I told her that I didn’t spend $90,000 on a college education so that I could go back to a customer service position and that was PAST experience. I explained that my degree was in Business Administration with a concentration in Human Resources and that I am also a graduate student studying for my M.B.A. I’ve done time chained to a phone like a prison monkey, which is exactly why I went to college to get my degree.

Her response to my mini-tirade was that there were no administrative assistant positions available but that I should call back the following week…the week after my last day of work. Which I did. I called the Monday after I was laid off.

At that time my recruiter, Ann, told me that she had an administrative assistant position she thought would be a good fit for me. GREAT! or so I thought. I was HONEST and told her that I have cancer. I explained that my now former assignment was cool with the fact that I was going to need a day off here and there for chemotherapy. I also explained that I WANTED to work but I would need every THIRD Thursday off for chemotherapy. IT IS NOT NEGOTIABLE.

Ann asked me if my doctor said it was O.K. for me to work. Well, he never said I couldn’t work and I would like to work as long as I am physically able. AT NO TIME did I ever say that I REFUSE TO WORK. The only thing I did say was that I was UNAVAILABLE for interviews the day I had to go for chemotherapy. It’s kind of hard to go to an interview when you are hooked up to an I.V. for SIX FUCKING HOURS!

So, Ann asked me to send my resume to her but to send it to the general email address at the temp agency because she was leaving for maternity leave any second. She told me Heidi would be working with me going forward. I have the distinct feeling that Heidi is either overloaded or a complete deadbeat because my phone hasn’t rang. Either that or my resume got lost in limbo because no one ever called me back about the job.

OR Ann heard “cancer” and stashed my file way in the back of the drawer.

In the meantime I filed for unemployment because I lost my job due to no fault of my own. In fact I left the assignment with a letter of RECOMMENDATION. That tells me I did a half decent job. Better yet…I emailed a copy of that letter to the temp agency!!!

So…WTF???

On Saturday I received a letter from Unemployment office stating the amount of money I would receive on a weekly basis and felt some relief. The relief was SHORT LIVED! There was another letter stating that the unemployment had been contested by the temp agency for REFUSAL TO WORK!!!!!

REFUSAL TO FUCKING WORK???

ARE THEY KIDDING ME???

Well Ann has gone on maternity leave but I hope she is ready to find a babysitter for her newborn baby because she is going to have to make an appearance in court to recount our conversation because I am contesting the living HELL out of this.

I WAS LET GO FROM A JOB DUE TO NO FAULT OF MY OWN.

I CALLED THE TEMP AGENCY SEVERAL TIMES TO GET ANOTHER ASSIGNMENT.

THEY DID NOT PROVIDE ME WITH AN ASSIGNMENT.

WHERE IS THE “REFUSAL”?

You CANNOT imagine how pissed off I am. Poor Dude has had to listen to it all weekend because I am furious. Livid. Extremely and explosively angry.

I CANNOT wait to call Heidi at the temp agency Monday morning. God hath no fury than an angry, unemployed woman with cancer…this angry, unemployed woman with cancer. And before I make that call to Heidi you better believe your sweet ass I’m calling my attorney.

The $90,000 degree is finally going to pay off…thank you God…because I’m finally going to use it to my OWN ADVANTAGE. I’ve absolutely had it with this kind of crap.

Good Morning Heidi…hope you had a FABULOUS WEEKEND because I’m about to blow the lid off of your Monday! Coffee and donuts anyone?