Just Do It

Dearest Friends,

It broke my heart two months ago when I had to tell you that I was diagnosed with cancer for the third time. I expected you to run away and instead you rallied around me offering more support than I could have possibly imagined I’d get.

As an online community you came together and sent my family to Disney World. At this moment you have no idea how grateful I am that we took that trip. I don’t know if we will have the opportunity to take a trip like that again.

Today I was hit pretty hard. Not only was it my final day of work but I also had an appointment with the oncologist. I left work feeling sad and arrived at the doctor’s office not as strong as I would have liked. I expected him to tell me that I had either ovarian cancer or colon cancer and give me the course of treatment.

Instead I was given a different diagnosis…

I have a rare form of cancer that has no treatment protocol. In fact it’s such a rare form of cancer it has no name really. According to the doctor there is only one paper published on this form of cancer. One stinking paper.

The only thing we do know is that it’s aggressive.

Of course there is much more to this story but I don’t want to get into how Fox Chase Cancer Center dropped the proverbial cancer ball right now.

Right now I’m praying that my insurance company will pay for treatment. See, because it’s a rare cancer and there is no official treatment protocol everything is considered “experimental”. The insurance company doesn’t pay for experimental treatment.

You know that I’m strong but losing my job and finding out I have a rare cancer that’s not covered by insurance…all in one day is enough even for the strongest person.

And I know we are at that place again…at the end of a post where you don’t know what to say. Please don’t tell me you are sorry because you know how I feel about that. Instead let’s talk about something you want to do. What have you been putting off? Not a chore or project but something enjoyable that you’ve wanted to do?

Name one thing you would like to do and tell me…why the hell you aren’t doing it?

Getting Through the Past To Be Present

Don’t let the past steal your present. ~Cherralea Morgen

There are times when I feel like I’m bombarded with the past and it bogs me down as I’m trying to deal with the present. It becomes overwhelming because it’s like having too much going on at one time. I don’t doubt my ability to deal with everything but right now I’m stuck.

Last year at this time I was dealing with a total medical disaster. In fact a year ago at this time I was experiencing one of the worst moments in my life. Up until I was diagnosed with cancer again I was experiencing flashbacks. When I received my diagnosis the flashbacks subsided but they’ve resurfaced and I’m dealing with the past and the present at the same time.

I had been in the hospital for three months and couldn’t walk after five surgeries. My memory was just starting to return after I was in coma for three weeks and after having amnesia for another three weeks. Even worse I was left with a fistula and the uncertainty of if or when it could be closed.

The nurses at the hospital treated me horribly because I had a fistula. It was like I had some horrible disease they didn’t want to come near. I had no idea how to take care of it and the hospital only had one ostomy nurse. If the bag started to leak in the middle of the night the nurses wouldn’t do anything to help me other than give me a towel and say “tough luck”. I can’t tell you how humiliating it was to lay in a hospital bed with a towel for 12 hours collecting my bowels until the ostomy nurse would come in.

Then the time came for me to go to rehabilitation so that I could rebuild my strength and walk again. I was able to walk from my bed to the bathroom with assistance but any further then I would become very dizzy and weak. The hospital coordinator and my husband found a rehab close to my home but they didn’t check it out closely enough because once my husband saw where I was sent he was heart broken.

There was a nursing home where people who are basically vegetables going to die that wanted to start a rehab and lucky me…I was there second rehab patient. I was also the youngest person there. Everyone else was at least 80 years old, had Alzheimer’s or had a stroke. I was amongst the living dead. The nurses treated everyone that way too, including me except I was 40 and very much alive. I felt like I was trapped in hell.

Rehab was a joke. It consisted of exercising 30 minutes a day. The other 23 1/2 hours were spent in bed. I could have spent that time at home. There was supposed to be an ostomy nurse available to show me how to take care of my fistula. She never showed up and the administrative staff showed up in my room to lecture me on “being and adult”, “growing up” and “taking care of myself”.  The biggest problem I had was that the ostomy nurse at the hospital never showed me what to do.

The administrative staff didn’t listen to anything I had to say so I had to teach myself what to do.  That resulted in a total disaster which landed me in the hospital a week after discharge from the rehab.  It also resulted in more mistreatment from the nursing staff at the hospital because they didn’t want to deal with a fistula patient.

It was devastating to be treated like I was some kind of diseased animal.  Even worse it was devastating to be treated without respect.

At first I made excuses for the treatment I received until I had my sixth surgery to reverse the fistula.  The nursing staff, for the most part treated me very well.  There was one nurse’s aide who was ignorant and mean but I reported her.  She actually cursed at me so she deserved to get reported.  Then I realized there was no excuse to be mistreated.  No one deserves that under any medical condition.

Here I am now in much worse condition in terms of cancer.  I’ve told family and friends I will not have surgery again.  So, it’s a good thing the doctors have told me my tumors are inoperable.  I could not risk going through what I went through again.  I can’t imagine living with a fistula or even a colostomy.  I realize other people do it but I did it for a short time and it was like living in HELL.

So, I feel as if I’m trying to move past what happened last year and deal with the present situation at the same time.  I can’t ignore the past which is why I’m acknowledging it.  It doesn’t deserve the power it’s trying to gain.  I need to be present to deal with the present.

Cancer Bad Ass

Only because I am and because I can, I have crafted this fine looking T-shirt in conjunction with Zazzle to show off my cancer bad assery…

I just couldn’t resist. And if you know a cancer bad ass you shouldn’t resist either! Shirts are for sale here.

You Win Some, You Lose Some

A true friend is one who thinks you are a good egg even if you are half-cracked. ~Author Unknown

On Thursday I left work at 3:00 pm because I was in pain. I’m in pain every day but on Thursday it was too much to take. My head hurt from a sinus headache and my abdomen hurt from three of my tumors. I don’t like to complain about pain but I had reached my threshold and didn’t have any painkillers with me.

I felt incredibly guilty leaving work because I know there are far worse days ahead but I was not productive Thursday afternoon. How bad does it have to get? I mean, when the pain feels like someone has stabbed you with a serrated knife 10 times and your head feels like it’s been bashed 10 times with cinder blocks does that qualify as bad?

Still, I felt guilty and I’m earning pennies.

Friday morning I returned to work after spending 14 hours in bed and got some bad news. There were lots of changes and promotions made after I left Thursday. As a result my boss is getting a new “secretary” because they are still stuck in the 1960’s and use the term “secretary”. His office is being moved because someone else is moving into our office and I haven’t been assigned to anyone or to a new office.

No one, except for my boss was straight with me. I called the temp agency that I work for and all they told me was to report to work next Tuesday. Well, that’s interesting but who should I work for? What office should I go to? What the hell?

The thing is that my boss and I have become pretty good friends. He’s such a great person and we relate to each other on a lot of levels. He’s honest and genuine. He also went to corporate HR to fight for my job. I will sincerely miss working for and working with him. I think I’m more upset about us not working together than I am about losing my job.

That’s how highly I regard him.

Of course I’m worry about my financial future and I realize that this is probably the end of the line for me in terms of work. What employer in their right mind is going to hire an employee who is going through chemotherapy in an economy like this one? Oh, I realize employers cannot discriminate by law but please, they will find their way around that loophole and come up with 100 other reasons why they don’t want to hire me.

Showing up for interviews with a wig on and looking ill is also not in my favor.

So I’ve spent the day calculating how much I’ll collect on unemployment for 13 weeks and hold on your seat folks because it’s a whopping $200 a week. Woo, fucking, hoo. I’ve also decided that it’s time to apply for Social Security Disability because I have been qualified for it for seven years. I’ve chosen to work full-time which has sometimes been detrimental to my health but now that I have cancer for so long I’ve got two illnesses that qualify me for it.

Am I taking advantage of the S.S.I. system? No. I have an illness…cancer…that will result in death. Do I want it to result in death? Fuck no. My plan is to fight until the bitter end but the days are ticking by.

So, although losing my job soon is an absolute financial disaster for my family and I, it’s a blessing for my illness and my body. It is a complete bummer in the fact that I will truly miss my awesome boss and co-worker who I consider a real friend. He totally rocks…figuratively and literally.

Be sure to go listen to a few of his songs…

The Poster Girl Has Left the Building…

I’ve got nothing interesting, captivating or inspirational to share. In fact anything that I write will probably come out sounding pathetic, needy and whiny. If you are looking for something pithy or enthusiastic it’s just not here today.

I’m worn out. I keep telling you and everyone else around me how I’m a cancer bad ass, I’m a fighter and that I’m going to win once and for all. Well, it feels like a load of crap right now.

Don’t get me wrong, I’m grateful for a lot of things like the kindness of my family, friends and a co-worker who went to bat for me so that I could keep my job for a few more weeks. In fact I’m surrounded by love and caring from so many people it should be enough to carry me but it’s not. All it takes is one person to tell me they don’t care and I obsess about it…no, I’m heartbroken.

Every day is getting harder to pretend I’m O.K. I don’t feel like doing the things I normally enjoy because I’m in physical pain and I’m depressed.

Writing a post is down right agonizing.

I’m sorry but today I just can’t be your poster girl for kicking cancer’s ass.