Friday, February 25, 2011

Change is good - So they say

Things have changed in my situation; and it's changing a bit too fast for me to keep up. So, my new plan is to write the current up-to-date news on the top, and try to fill in all back history of my story at a later date.

Treasure Hunt & Interleukin 2

My cancer has moved into stage IV Melanoma, as I've developed a new leg tumor and nodes on my lungs. In comparison to the tomato in my inner thigh that's already been extracted (and I hope, juiced!) they are all relatively small. I was told that surgery isn't the best choice at the moment, and that Interleukin 2 is the road to take. I'm the tiniest bit relieved since I've already had 4 surgeries since December and I've grown tired of being under the knife.

Today I had a heart stress test, and a brain MRI. These are needed to make sure I'll be able to endure the harshness of the Interleukin 2.  Monday I'll have a pulmonary function test and see my oncologist, who I'm hoping will let me know if I'm strong enough to do the drug at that time. If I pass all the test, I'm guessing I'll be admitted to the ICU either this Tuesday or Monday, March 7th.

The drug is administered through a port every 8 hours for 5 days (monitored at all times in ICU) - then I rest at home for 9 days - then I'm back for another 5 days, and I hear it's a bit harder the second time around. If I'm a full receptor to the drug, the cancer shrinks away and in some cases a person can go into remission for over 10 years. I want that!

So this weekend I'm doing a bit of a Treasure Hunt. I'll be looking for things to combat the drugs side effects.

I'm doing pretty well, so far I've got:

Manuka Honey from Tea Trees in New Zealand - good for nausea and dry Mouth. 

Marmite for its vitamin B, riboflavin and niacin - thank god I love it! And saltines!

Healing cream made from Manuka Honey, for when my skin cracks, as well as Vaseline - for cracked eye lids. 

Heating Pad - for chill and the rigors (I'm not looking forward to this)

Anything to make it all go by easier.

When I go in for the treatment I'm going to be asking everyone I know to help me visualize the Interleukin 2 working to shrink the cancer until it's all gone. I think that all that positive visualization will really help. I have to be one of the 16% that are full positive receptors of this drug. I have to be a full positive receptor. I will be a full positive receptor!   

Thank you all for being there for me.

Friday, February 18, 2011

To Amputate or Not to Amputate, that is the Question

The next nights after work were filled with scouring the internet looking over every page that had anything to do with clear cell sarcoma. There wasn't much, so I joined a forum for rare cancers. After reading all the entries, it looked like a lot of people opted for the somewhat life lengthening option of amputation. Normally they had a 5 year survival rate. So little is known about the clear cell sarcoma, other than it doesn't respond to any mapped out treatment. So I start to imagine life with out my leg. Well, it couldn't be that bad - once you got used to it. A little bit of a ghostly itch now and then. Maybe a fall or two,maybe you'd be a little Topsy-Turvy for a while. I'd get used to it, and I'd get a wooden peg leg - just for kicks! Who does that sort of thing anymore?

My appointments had been set for both specialists. The first was the clear cell guy. I waited for a good 45 minutes before anyone poked their head in. After another 20 minutes he came in, he looked over the lump and said that amputation wasn't an option for me because it was located up too high.  He told me he'd just cut it out and we'd do some form of treatment. I told him he was dashing my dreams of a wooden peg leg - he didn't even crack a smile.

Suspicious Minds! Pffft! Suspicious Moles!

I'm happily at my job helping an eager environmental do-good-er find some stainless steel straws, when the buzz in my pocket lets me know I had news. I tore my self away by transferring said environmentalist over to a co-worker, who was now showing off the many waste-free lunch containers designed for 3 year old's.

On the phone was the doctor, who had struggled with the largest needle I've seen that wasn't a Halloween prop two and a half weeks before. After affirming that I was indeed the person that he'd sucked a one inch, 1 mm round, tube of tumor out of, he asked (xxxxxxxbjjiio/ - this was added and written in by Glen, our budgie - if you understand what it says contact us immediately) if we could talk privately. I ran to the back entryway and sat on the stair, for privacy, he told me that the pathology showed that I had either a clear cell sarcoma or a metastatic melanoma. He couldn't be sure which one it was, and I was to be in his office the next morning at 8am to be looked over for suspicious moles.

The next morning I was checked thoroughly from head to toe, with no ugly mole to be found. I have no recollection of any horrid skin abnormality in my life, that would fit into the category of a suspicious mole.  With no source for the cancer, my doctor leaned heavily towards the side of the dreaded clear cell sarcoma, which he said was rare. After setting me up with an appointment with two top Doctors at Duke Hospital, one specializing in melanoma the other clear cell , I asked how rare the clear cell sarcoma was? He practically started shaking and said, "R-A-R-E!  There are under 400 cases across the nation!" His grin spread from ear to ear. "Rare!" he said while a vision of an article written in the local medical magazine about his discovery farted in his head.

Maybe he'd get a mention in the National Medical Journal!

Wednesday, February 16, 2011

$3,000.00 X-Ray

November 2010 - After being canceled on twice, I finally see the local surgeon.  He gives me the impression that I have a swollen lymph gland - nothing to worry about, though he wants me to get a CT. 

Talk about medical ignorance!   I, in my head, just pictured an x-ray, so I agreed.  I showed up at the imaging place,  donned a gown,  and was lead into a huge room; there I was told to sit next to this large looming washing machine thing.  It's presence started to creep up on me and it slowly sunk in that I was supposed to lay down in the damn thing, and CT meant Cat Scan not x-ray! 

I told the technician that I was very sorry, but that machine looked incredibly expensive. It would cost me an arm and a leg just to put a toe in it! I couldn't do it. I had them look up how much it would cost, and they told me $3,000.00! I definitely couldn't do it. I asked what other imaging alternatives there were? Couldn't I just do a ultra sound at $300.00 instead? Or couldn't I just have a biopsy done instead of sliding into some washing machine thing that was going to clean me out financially.

The surgeon wasn't happy that he had to work from an ultra sound image instead of the CT he had his heart set on. My position was -why not just shove a needle in it and see what you come up with? What's all this fancy pants imaging, about?! So working from the ultra sound image he got two small needles and sucked up one tiny drop of blood in each. I'm like, what? Thinking to myself 'that's not much, and ask where do we go from here?' He replies, he'll send it off to the lab and if he didn't get enough tissue, then he'll have me back in and we'll do a core biopsy.
I'm like, 'WHAT?!!! You gotta be kidding me! Go get the big needle, NOW! Get the scalpel and take what you want!!!!!! However much you want!!! - Slice it open! I'm here, I got my pants down! I'm not coming back!!!'

I think I may have scared him. He sent his assistant out to get the big guns.

Introduction and Pre-Diagnosis

Hello, and Welcome to Letha's Happy Hospital Funtime Blog!

Who ever thinks they'll end up being diagnosed with cancer? I didn't! Well, maybe just a few times in my life, I did think about it whilst dragging hard on a crusty cigarette. And I suppose, I thought about it just enough to finally listen to my wonderful husband's pleas and quit smoking.  I must say, as cancer goes, I'm so thankful that I didn't get lung cancer. Not only would I then have heard the 'I told you so's' lining up, but I'd never have been able to forgive myself for being so pathetically stupid.

October 2010 -  It's my and Dan's 10 year anniversary! We're happy and proud that we've made it this far, and to celebrate we plan a trip to Savannah, GA.  Weeks before the trip I develop what seems to be a pesky bladder infection. After seeing a doctor about it, I am told there is nothing wrong with me and I am in perfect health. A miserable week goes by and I go back, this time seeing a different doctor, who confirms the tests show nothing, but I could have interstitial cystitis. This is a chronic inflammation of the bladder - which can be managed by diet. And is 0% fun.

Poor me, I didn't want to eat anything because it made me uncomfortable so I just ate apples, and salad. Our trip to Savannah, was a bit marred by the fact I wasn't eating. I missed out on Paula Dean's fine fried (to death) fare. The trip was also marred by the rancid smell of the near by paper mill that hung in the air like gutter bum's foul wafting fart. Savannah is beautiful, but with the tactless tourist and the heavy stench permeating everything; (even the lurid paint strokes of the 'Beauty and the Beast Falling In Love'  in the Thomas Kinkade  Gallery were permeated with the aforementioned); we have to let people know, "Don't go to Savannah!"
By the end of October I had lost 20 pounds and gained a Jersey Tomato sized lump in my inner right thigh.

Bejesus! What the....!!!^*####*! How ever did I miss that, I'll never know!  Honestly, in another day or two it'd be a baseball. I immediately went back to the Doctor, who heavily suggested I see a local surgeon.