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Saga of a Snowflake

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My first post, August 9, 2003:

Hello all, I've been "lurking" for a while and decided to jump in and introduce myself.

Life has been an emotional roller coaster for the last year. I got married in June of 2002 and began working on blending a family (second marriage for both of us). Ups and downs there that would buck a "normal" person, but we've hung on tenaciously...

November 2002 my husband and I "shared" a case of pneumonia...in December, his had begun to clear up, my X-ray showed a foggy area in my right lung. My WONDERFUL family doctor wanted to follow up on that shady area and sent me for a CT Scan - this was the day after our family Christmas, December 27. Results from the CT showed a definite mass in my right lung, so she sent me to see a thoracic surgeon for follow-up. Due to my age (34) she was sure it was just an infection of sorts. (I'm not sure who was more shocked with the diagnosis, her or me!)

After talking to the surgeon, the decision for a biopsy was made and I was scheduled for January 28. Received the diagnosis of adenocarcinoma that evening, primarily staged as Stage I. The surgeon suggested I have it removed within three weeks and I began waiting to be "fit in" with one of the partners in his office.

Surgery was planned for February 10, same day as my maternal grandmother's funeral.

Surgery was more than it was supposed to be and instead of losing the lower lobe of my right lung, the lower and middle lobe were removed along with seven lymph nodes. Cancer was restaged as IIIa - I didn't find this out until my initial meeting with an oncologist three weeks later.

Went to MD Anderson for a second opinion in March. Sent home - guess I wasn't sick enough for them! I had been told to plan on spending a week in Houston (quite a "drive", I live in Michigan), so we did. Plan, that is. I had 15 minutes of the doctor's time "Sorry you have this disease, there's nothing we can do for you here. We do not recommend radiation nor chemotherapy for lung cancer, it's not proven to add to survival rate."

Needless to say, my husband and I were FLOORED with that and scrambling to change/cancel reservations and get home. Still have a pretty bad taste in the mouth over that...

My home oncologist also does not recommend chemotherapy, but said radiation would be fine...went for that, had to do SOMETHING.

Clinical trials were the recommended path, the oncologist set me up with Iressa the day after radiation ended (May 9). Side effects began the very next day...

Skin rash, acne-like? My face turned into the landscape of MARS! Not only was it ugly, it hurt! Solution? Antibiotic for 20 days. Calmed the "spots" down some. Finished the antibiotic, spots back with a vengence... As if the spots weren't enough, there was the assault on the GI tract - can only be described as explosive. The side effects kept adding up as I took the drug and the last appointment had a list of facial hair loss, hair loss, fatigue, loss of concentration/memory, brittle nails and pressure in the eyes. Doctor decided to take me off the drug for a month and see if the side effects I'm experiencing are truly from the drug and not something else...it's been two weeks and the rash is FINALLY starting to tone down. Tummy's been faring better.

I see the oncologist in two weeks and am not sure I want to return to the Iressa if that is an option. He has me on it as "preventative", an attempt to keep the cancer from returning - another trial for uses of the drug. My husband tells me the ultimate choice is mine, but it's a hard one to make. According to the surgeon, the odds of it returning are 50/50. According to the oncologist the odds are 40/60 in the favor of the cancer. The oncologist feels that a year of "hellish side effects" are not worth it with a drug that hasn't been proven to work for what I'm taking it for. (To be honest, the side effects were getting worse with use and I know that the ULTIMATE bad side effect is death and THAT doesn't sound like a good option to me - from what I've heard, if you get that side effect you don't get any others!)

ANYHOW, that roller coaster I mentioned.... I started back to work, but due to fatigue from not sleeping at night and confusion/memory loss have been in a fog. Not good in my profession, I'm supposed to catch everyone else's mistakes! Was sinking into one big depressive pit so decided to take a vacation for a week... GREAT attitude adjuster!

With a change of scenery, had a change of heart. My view of the cancer is that little black rain cloud that Winnie the Pooh sings about...even if it NEVER comes back, that little black cloud will follow me for life. Two years out, "what if"....five years out "what if"... Best use for rain clouds? Growing flowers! I'll be darned if I let this thing beat me emotionally before I have to take it on again physically - I may never have to!

(Need I add that at times the numbers all dance in my head and it scares the heck out of me? Keeps me up at night? Makes me wonder if I'll see my son graduate?)

BEST part of this disease? I found out that I have far more friends than I ever thought possible and could actually FEEL the "power of prayer" in the hospital and when I came home - the times when I really needed some help emotionally as well as physically.

So, my current standing with the disease? I was fighting 40 pounds of unwanted fat before the whole pneumonia thing and have lost half of that - some prior to surgery, some after radiation (had to maintain during radiation "or else" - I think they were going to take my birthday away or something) If I lose 20 more pounds, I'm buying a leather halter! Heck, got the tattoos and the scar, might as well show 'em off! I've told my husband and most of my friends that I plan on telling anyone that asks about that huge scar on my back that I got it in a knife fight... May as well have fun with the "trophies"! Maybe I'll get a Harley next....anyone know of a place I can get one with training wheels??

So I gained back all the weight I lost.

Scans have been clear since surgery. Tragedy still strikes, cancer is NOT the worst thing to have happened in that past year. I've lost two grandparents, a divorced from the family uncle, a friend by marriage, a high school friend and a d*mn good dog...I'm still hanging on.

I fight battles with the mental demons less often, but the demons are still there. I doubt they will ever crawl back under their rock and leave me alone. Seems to me the biggest battle (through and after all the physical stuff) is the mental one. Just keeps on tickin'...

Very glad to have stumbled upon this site, I feel...well, I can't say "normal", that would be a miracle...but I feel like I belong. Welcome home!


aka Snowflake

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