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Current Events

Current Events

by Lisa on September 5, 2008

in Kool Peeps

There are so many current events swirling around me that I haven’t been able to concentrate on writing anything about what’s going on in my own life.  I’ve been recovering from chemotherapy which means I’ve been sleeping alot, feeling really weak and not blogging.  A lot of people have started to call to make sure I’m alive.  Hello, I’m alive.  Thank you very much for checking in on me.

Thanks to everyone who sends sweet gifts like Lisa O. who sent me a package full of candy corn yesterday.

I’d love to thank the person who sent the box full of chocolate covered coffee beans but there was no note with the box.  Please come forward so I can properly thank you.  I can’t keep Dude out of the candy and he is bouncing off the walls!

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Access Denied

by Lisa on May 19, 2008

in Uncategorized

Truth only reveals itself when one gives up all preconceived ideas. ~Shoseki

When I started blogging in 2005 I was very careful never to use my first name, never to mention where I live and never cross my real life with my blog life. Now that last part sound ridiculous - “my real life with my blog life”. I’ve always blogged about my real life so where exactly did I draw the line?

As time went by I decided to drop my pseudonym and start using my real name. It just felt weird calling myself anything other than “Lisa” although those of you who knew me back in the beginning of my blogging days still say I fit that name to a “T”.

I’ve carefully guarded my blog as well never granting access to family member and friends because God forbid they see that I use the “f”-word. Even worse they may actually find out what goes on in the inner workings of my mind. In reality, my family and friends know exactly what goes on in my head…sometimes better than I do.

Over the past six months I’ve been letting some of my family members and close friends read Clusterfook and so far haven’t felt any retribution. Quite frankly I’ve reached a point in my life where I’ve got nothing to hide and nothing is taboo. I look at it this way…love me or leave me.

However recently my dad has been asking for the URI of my blog so that he can “keep up” with me. I tried to explain that this blog isn’t one of those blogs. This is an open book, raw and unadulterated, sometimes brash and offensive but always true to who I am. I suppose if he can accept that then he would be O.K. with some of my entries.

This is my blog, my domain and I’m free to write any way I choose. It would be his choice to read, right?

What would you do?

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Afterburn

by Lisa on May 13, 2008

in Uncategorized

There is so much I have to tell you about our wonderful trip to Disney.  I promise to tell you all about after I get some much needed rest and after I recover from the bad news I received about my job.

Looks like Friday is my last day.  I kind of saw the layoff coming but getting slapped in the face with reality my first day back from vacation was kind of hard to handle.

I also have a ton of unpacking, blog reading, bill paying and e-mail reading to do.

What have you been up to?

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Wigging Out

by Lisa on April 27, 2008

in WTF?

Yesterday was my big wig consultation. Not big wig as in “hotshot” or “Ms. Important” but as in hair replacement, get-a-wig, consultation. Let me tell you something, there are some folks out there that have turned cancer into a huge racket. I found out how huge yesterday.

The hair salon I went to specializes in helping cancer patients with hair prosthetics which is why I chose to visit them. They were very, very nice to me over the phone and once I arrived. I thought, “Wow, great customer service! How unusual!”

The consultant took me to a private room where we had a discussion about my illness and what I was looking for in terms of hairstyle. Then he told me the starting price for their wigs: $1,200! I felt a little vomit in my mouth. He must have seen me turn pale because he proceeded to tell me that for cancer patients they start at $800.

Oh, what a bargain!!!

I stood up to leave and told him the wigs were completely out of my price range and the prices were completely ridiculous. That’s when he told me those were the prices for human hair wigs. WTF? The synthetic wigs started at $250 and ranged to $800. He proceed to shove a bunch of catalogs in my hands and expected me to choose a wig from a catalog.

Well, it’s a good thing I did my wig homework prior to the consultation because the wigs in the catalog were the same exact wigs I saw on Wigs.com except the salon was charging three times the price!!! So basically I would have to choose my wig from the salon’s catalog and pay $650 instead of $175 at Wigs.com.

What a waste of time.

When I got home I went through the website again and asked for Cam’s and Teenie’s opinion on what wig I should get. Cam could of cared less. Teenie was very particular because she’s very upset that I’m going to lose my hair. She wants it to look very much like what it looks like now…cut and color.

So, Teenie and I chose this wig with this color:

New Wig

Dark Copper

Pretty darn close to what I have now! And it only cost me $178!

I know that most of you voted for long hair and even Dude would like me to have long hair as well so when we come back from our trip I might order a longer wig if there is some leftover spending money.

So what do you think? The wig’s name is “Fiesty”…is that apropos or what?

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It’s time for me to stop stressing out over this trip to Disney and over money. After all, didn’t I just post about living now and being at peace? I want both of those things back pronto. Let me just say that in yesterday’s post I wasn’t stating that anyone was angry, I was just stating that if I stepped on anyone’s proverbial toes then I was sorry, truly sorry.

Now I’d like to talk about my doctor’s appointment with the medical oncologist on Tuesday. I don’t want to through a bunch of medical crap at you so I’ll explain in the most basic terms I can because this is really fucked up.

Last year, February 2007, I had a biopsy done of the mass on my abdomen and the type of cells found weren’t the kind typically found with ovarian cancer or recurrent ovarian cancer but the report stated that “it couldn’t be ruled out.” So the doctors slapped the diagnosis “RECURRENT OVARIAN CANCER” on my forehead and insisted that’s what I had.

My family doctor and gynecologist/cousin were two voices of reason who said, “hmm, that doesn’t make sense…” However not being oncologists they told me that I should go to a gynecology oncologist and at no time did any gynecology oncologist tell me that it wasn’t recurrent ovarian cancer.

When I had surgery at…gasp…Fox Chase Cancer Center in Philadelphia…gasp…yes, the place that tried to kill me…they never followed up with a letter, a phone call, nothing. They never suggest chemotherapy, never told me if I actually had recurrent ovarian cancer and basically dropped the ball. DROPPED. THE. BALL.

So, for the past year I’ve been of the thought that I had recurrent ovarian cancer and didn’t need chemotherapy. I’ve thought that every thing is fine because a world renowned cancer center would have contacted me after their board of certified oncologists reviewed my case, right?

Not so much.

Even better is that when I was first diagnosed with ovarian cancer in 2004 the tumor I had was a borderline low malignant potential tumor. That’s a tumor that has the potential to become cancer and in my case was cancer however it took three hospitals to make the diagnosis. I wonder today if any of them had it right because all three opinions were different.

Can you say, “fucked up”?

Better yet? Borderline low malignant potential tumors…rarely ever come back and when they do it’s not in the form of cancer that I had last year NOR is it as aggressive as the kind of cancer I have now.

I knew all of this information before I met with the oncologist on Tuesday and then he confirmed every thing I knew from the research I did. It was a beautiful thing, yet extremely tragic.

The medical oncologist has a theory that I may not have recurrent ovarian cancer at all but something completely different…except, he isn’t sure what it is. It could be colon cancer, gastrointestinal cancer, lung cancer, breast cancer…some kind of aggressive cancer that is spreading to other organs. The remaining questions are: where else is this cancer and just how bad is it?

Right now we have no idea what kind of cancer we are dealing with and won’t know until I have a full body CT scan and a fuckton of blood work. I’ll have to start chemotherapy and after three rounds I’ll have another full body CT scan and another fuckton of blood work to see if there are any changes. Hopefully that will help diagnose what kind of cancer I have to better treat it.

The doctor thinks that I’ve actually had this cancer much longer than any of us think especially based on the size of the tumor found on my abdomen last year which was 4 inches. This is why he wants to start chemotherapy immediately.

When I explained how important it was to take my children to Disney World he completely understood. He said, “Take your babies now while you still can but do it quickly because we need to take care of you fast!”

I have a full body CT Scan scheduled for next Friday. Depending on those results I may have to go through a round of chemotherapy before I go Disney World.

Of course we made our plans for the trip and then found out that our medical coverage changed as of January 1, 2008. We are responsible for the first $3,000 of coverage each year before our insurance pays 100%…we pay 10%, they pay 90%. That $150 co-pay I thought I had for my biopsy last week? OUCH, HURT ME…I got a bill for $294.35.

Live and learn…but fuck it. I’m taking my children to Disney World.

The hospital will have to get in line, take $10 a month until I can pay it off. I’m tired of paying every bill on time, living on nothing while every other asshole went out there and bought a house they couldn’t afford. I live in a tiny little house with three people. That’s just a rant for another time…

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Dearest Friends,

 I want you to know that we aren’t going to talk about cancer every day.  In fact, I will relish the day when we can look back and say, “oh remember when Lisa kicked cancer’s ass???”  Clusterfook is not about to become a cancer blog.  It’s just that cancer has become a big part of my life…and this is a “life” blog…my life.

Today my life took an unexpected, wicked turn and I’m right back to where I was a week ago, feeling like I have to apologize for what I’m about to tell you.  After all the support you have given me I feel like I’m about to let you down.  I mean, you can only take so much before you say, “whoa, this chick is a total downer…clickin’ the X, upper right!”

Here it goes…

I met with the oncologist to get the results of my biopsy and things didn’t go very well.  When they did the biopsy they had to do a CT scan to see what they were doing before they poked me with a very large needle, ouch.  I wondered what the flury of activity and excitement was all about but no one was saying anything to me.  I just figured that’s the way they all acted when they did a biopsy.  Well it turns out I’m an idiot who should ask more questions.

Well it seems that the cancer has spread beyond my abdomen and liver…it’s now in my lungs.  God only knows where else it is so I’ll need more tests but that’s not the bad news.  Here’s where you might want to use that ‘upper right “X” option’ if you are ready to jump out of your blogging window.  The type of ovarian cancer I have doesn’t respond well to chemotherapy so the doctor doesn’t have high hopes for a good outcome.

I looked at him and said, “I’m going to kick cancer’s ass…I have things to do!”

I wish I could tell you he was supportive of my attitude.  He doesn’t understand that I’m not ready to die, I’m not ready to throw in the towel, and I’m not ready to give up.  There is just NO FUCKING WAY!

So here we are at an ackward pause…I’m leaving you again, not knowing what to say.  Please, please, please do not tell me you are sorry.  Why be sorry?  You didn’t give me cancer or cause this.  Instead let’s talk about something worth fighting for.  What would you fight for?  World peace?  A place in line for tickets to the best concert in town?  The last peanut M&M in the bowl?

I, for one, plan on fighting for my life…and that last peanut M&M…

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Kung Fu Shrimp

by Lisa on April 5, 2008

in Uncategorized

The only reason why we ask other people how their weekend was is so we can tell them about our own weekend. ~Chuck Palahniuk

First of all, I feel like I owe you an apology. It’s not like me not to respond to each and every comment left here. Because you took the time to share your thoughts with me I really want and believe me, have something to share with you. It’s that I’m emotionally exhausted at the moment. I hope that you can understand and will continue to offer your support.

It looks like your kindness and generosity are going to send my beautiful daughters to Disney World. I have no idea what exactly is happening but there are a lot of people working together to make a dream come true. I haven’t said anything to Cam or Teenie yet.

In fact, I haven’t even told them I have cancer again.

They are aware that I’m sick and they know I’m going to a number of doctor’s appointments. I may be very brave in my fight against cancer but heart broken that I have to tell those two wonderful little girls that I’m sick again. When I think about all of the things they’ve missed out on in their lives because I’ve had cancer…I start to sob.

Like now.

I don’t lie to my children when they ask me questions because I keep it real. I know what they are going to ask me…”Mommy, are you going to die?”

The truth is…I don’t know. This time…I don’t know. It’s complicated. I don’t want to die. I want to fight and I’m going to fight. I am determined to win…kick ass and survive…but I can’t tell my children with any type of certainty that I’m going to be just fine.

As a parent I’ve never been put in this position. As a child I’ve never had to deal with such a situation. I’m at a loss.

They are silly, happy girls…just last night Cam and Teen were singing the most ridiculous song…

I’m a Kung…fu…shrimp…I’m-a-naked-shrimp….

I was like WTF???

I’m a Kung…fu…shrimp…I’m-a-naked-shrimp….

In between verses I heard roars of laughter and then they sang it in another key. A minor I believe.

I’m a Kung…fu…shrimp…I’m-a-naked-shrimp….

After I heard it about 10 times I wanted to scream at the top of my lungs…”SHUT UP!!!!” but I couldn’t. I have to revel in their silliness because soon their worlds are going to be shattered with bad news.

Instead I showed them some dance moves doing my best Bruce Lee impression singing…

I’m a Kung…fu…shrimp…I’m-a-naked-shrimp….

So, we will all enjoy this last weekend of normalcy. Tonight I’m going out with my best friend to see Sonny Landreth at the Sellersville Theater. I’ve never seen Sonny play solo but only when he was with John Hiatt (who I adore!) and the Goners.

Tomorrow Dude and I will take Cam out for her free birthday breakfast at IHOP where I will watch them eat pancakes. Then we’ill go see the matinée show of Nim’s Island.

Sunday evening I’ll be seeing the Rolling Stones Shine A Light with my best friend.

Monday morning I’ll go for a biopsy. We will know next week exactly how bad the situation is but for now I say…fuck it. Let’s have fun this weekend. Let’s forget all the drama that’s going on in the world and have a good weekend.

This is the first weekend in weeks that I’m taking my sick ass out. Hell, I might even sneak up to the Coach Outlet and spend my $100 gift certificate on a new spring bag.

When I get a spare $20 I’m getting this hat.

So, I hope you don’t have the ridiculous…

I’m a Kung…fu…shrimp…I’m-a-naked-shrimp….

…in your head now. If you do, good, because it’s stuck in mine. While you are singing Kung Fu Shrimp, what are your plans? Anyone playing Guitar Hero III? I seriously need some practice.

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Cha, Cha, Cha, Changes

by Lisa on April 4, 2008

in Cancer Sucks

It is not necessary to change. Survival is not mandatory. ~W. Edwards Deming

Awestruck is a good word to describe how I feel about what I see happening in the blogging community. People whose paths would never cross otherwise have come together for one cause and I find that amazing. I don’t have words to describe how I’m feeling.

I wanted to recognize every blog that had a link to Miss Ann’s effort but there are so many now I can’t keep up. I’ve been trying to come by and thank all of you for helping but again, I just can’t keep up. You have my deepest, sincerest gratitude. I mean that from the bottom of my heart.

Now I wish I could share good news with you but those of you who have read my blog for a long time know…I tell it like it is. Those of you who are new should know you will always get the truth, good, bad or ugly. Sometimes life isn’t always puppies, sunshine and rainbows.

Always count on one thing though, I always seem to land out on top of the most diverse situations.

My husband and I met with the oncologist yesterday. He specializes in gynecological cancers like ovarian cancer. He was in total dismay that the cancer center I went to last year did not suggest chemotherapy. He could not believe they never contacted me, not even by letter, to follow up. The doctor asked repeatedly, “They never contacted you? They never suggested chemotherapy???”

The doctor was also surprised no one suggest chemotherapy and that there was no consultation with an oncologist while I was hospitalized for four months last year. I never gave it any thought until he mentioned it. He asked the same questions repeatedly, “No one suggested chemotherapy?” No one??”

That’s when I realized I was fucked.

He told me what I already knew but he repeated it 10 times.

“This is very, very complicated.”

It turns out that I have tumors on my liver and abdomen. This is an aggressive cancer that seems to be spreading fast. I’m inoperable although my only hope may be that Johns Hopkins is the only hospital on the East Coast that may be willing to try surgery to “debulk” the tumor in my abdomen but it’s very risky.

Using chemotherapy at this stage in the game may or may not produce good results.

So I’m on a roller coaster.

One minute I’m like, “I’m gonna die…ahhhhhhhhhh!”

The next minute I’m like, “Oh no fucking way, I’m kickin’ ass…I’ve got things to do people!”

And then I have moments of inner peace and feel that it is what it is.

People beat odds all of the time. My daughter beat every odd against her. She was 15 ounces at birth…15 ounces.

The next time you are in the Dairy Isle of your supermarket pick up the Land O’ Lakes butter. Feel the weight in the palm of your hand. My 11 year old daughter weighed less than that butter the day she was born on April 1, 2007 1997.

She dropped to 13.8 ounces on April 3, 2007 1997.

Edit: Take notice of the dates…I don’t can’t get the year my child was born right.

They told us she had a 5% chance of living and that if she in fact did live…she’d be mentally retarded and have cerebral palsy. They also told us she’d have a multitude of other medical difficulties. For ten weeks I sat by a warming bed while a ventilator kept her breathing not knowing if she would live, not knowing what kind of life she would have if she did survive.

She defied every single odd thrown against her. She survived. Today she’s healthy, smart, in fifth grade and gets A’s in school.

She’s a survivor…and so am I.

If I’m going to survive I’m going to have to make some changes. I have to be willing to go to any lengths. I have to ask myself…am I willing to do that? Can I at least make one change today? What will it be?

Junk food. Out with the crappy, fatty, shitty, processed foods that are pure junk…all of them. I mean every single one of them…even cream in my coffee. My body needs, no deserves the purest foods and nutrients it can get, right?

So, this isn’t the greatest news and I have once again left you feeling like you don’t know what to say. This is what I’d love for you to consider…consider a change. What’s one thing you could change about your life today that would make it better? No matter how big or small…what is it?

The comments today are all about change…

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