Friday, September 14, 2007

My Story

In May 2005, months before I had turned 31 years old, I was working as a medical assistant in a not-for- profit clinic. I had moved to Dallas from San Diego the previous December to be with my dad who had terminal renal cell carcinoma. He past away in January and I decided to stay in Texas, near my family, for a while. I took the job at the clinic because I really loved the doctors that worked there- they really viewed their position as doctors as a means to serve society- and needed work, but mostly because I felt they were doing good things and I needed to be out of the house, keeping myself busy, not wallowing in grief.
The job did not offer insurance, but I did not plan on staying there long-term, so I wasn't worried about it. The doctors really took care of their nurses, though, and one day, while showing a nurse friend my pedicure, I asked a doc to take a look at a mole on my toe. The mole had been there my whole life, and had within the last year started to bleed. It sat square near the top of my smallest toe, but I was a runner, and ran about 25 miles a week, so I always assumed it was just irritated from that. Dr. Daya told me to go across the street to a dermatologist friend of his to have it removed. The derma took a look at it and said it was probably nothing to worry about, but needed to come off. It was perfectly symmetrical, had clear borders and normal color. I asked how much the lab fees would be because I was paying cash and not making great money. I also asked if it could be sent diagnostic lab I was familiar with, simply because I knew their prices. He said we would work it out but insisted on using a laboratory which specialized in derma cases. They gave me the number to an automated system and said the lab results would be ready in a week. I didn't think much of it.
A week later the doctor I was working for, Dr. Daya, called me into an exam room. I was a little freaked because the only reason I could conceive of him wanting to talk to me one-on-one was because I had done something wrong and was going to be in trouble. He was looking at the floor and very solemn, and told me he was sorry to be the one to tell me, but that I had cancer. "Nodular malignant melanoma," he said, "a very aggressive form of skin cancer." He said I needed to get immediate care or that I was in danger of dieing.

A month after the diagnosis, I finally found someone to who would see me even if I didn't have insurance. It took weeks of begging and searching and networking, but we finally found Dr. Beitch and Dr. Venkatessan. So, here's the short version:
May 2005- Diagnosed at Stage II.
June 2005- I went to an outpatient hospital and had the skin and some of the flesh around my toe removed, a skin graft taken from my thigh, and 3 lymph nodes from my groin to determine if the cancer had spread. Two weeks later the results came in that the borders around the skin left on my foot were positive for melanoma as well as 1 of the 3 lymph nodes. Now considered Stage IIIc.
July 2005- I had my smallest toe, part of my foot, and all 16 lymph nodes from my groin removed in outpatient surgery.
Outpatient surgery is no fun, especially if there is abdominal surgery involved. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.
August 2005- I began high dose Interferon in a hospital. Interferon is a biological therapy/ immunotherapy for high risk patients. The treatment is a little dangerous and has pretty serious side effects so it required 5 day hospital stays for 4 weeks.
September 2005- The treatment lowers your ability to fight infection,
and in early Sept I discovered that my leg was red and tender, and I had 102 fever. I had contracted a staph infection and had to stay another 3 weeks in the hospital fighting that.
October 2005- I was sent home and Rxed low dose Interferon to be self administed by injection for the next 11 months. I would be very sick and unable to work. Off and on through the year I was sick, jaudiced, and had heart palpitations and trouble remaining ambulatory. Spent some of the time in a wheel chair.
October 2006- Finished the treatments, but the treatment had caused a condition similiar to chronic fatigue syndrome. Spent a full year and a half combating those symptoms.
June 2007- Routine PET scan showed an inflamed inguinal node which doctors were concerned was melanoma. Node was removed but no evidence of disease found.
Present- The majority of the symptoms from Interferon have subsided. Currently NED (no evidence of disease.)

There is no remission for melanoma, because there is no cure, and, essentially, it's going to come back. There isn't even really a treatment for it. Even Interferon, which I took for a year, is rarely Rxed anymore because the results are so iffy (only a 6%-20% chance of staving off disease) and the side effects are so horrendous. Interleukin 2 (or IL-2) is also a treatment option, but has about the same results and even worse on the side effect side. I prefer quality of life to doing a treatment like that again. According to the American Cancer Society and most of the doctors I've seen over the last 3 years (and there have been a lot!) my chance of living to 2010 ranges from around 27% to around 52% and my chance of living to 2015 ranges from around 22% to around 37%. But, to quote Fight Club, "On a long enough timeline, the survival rate for everyone drops to zero." In a way, I'm lucky because at least I'm not going to work some shit job that I hate in the hopes of one day, after retirement or something, enjoying life. I enjoy it now. I live as fully as I can. And it's a good life.
There are some very hopeful treatments for melanoma in clinical trials now, such as vaccines. But until some kind of effective treatment comes out, I am not getting regular scans. My oncologist kinda said, "What's the point? There's no treatment anyway." and I agree. If I get scans every 6 months, I'll be a nervous wreck until the next one. So, I'm taking it as it is.
I'm hopeful about the future. But more importantly, I love the present. It's all we have, anyway.


Krista said...

hey there,
Im 26 years old, and I too have stage IIIC metastatic melanoma, with 5 postive nodes. I just wanted u to know that what your doing is incredible! <3

Heather @ boy, girl, and a pug said...

Just found your blog. I was diagnosed with stage IV melanoma and have been fighting my butt off for the last year. Please know you are not alone in this stupid fight!

Anonymous said...

Hello, Just thought I'd throw my 2 cents . I was diagnosed 3 years a ago w/ stage IV 12 tumors. 9 in Lungs. I took 6 cycles of IL-2 & 25 rounds radiation. and am going on 16 months of NED. There are many clinical trials that have shown positive results. Never give up!!!

Krista said...

my name is also krista, im a 27 yr old with Stage IIIC metastatic melanoma, with 5 positive lymphnodes as well.....i was diagnosed back in june 2008 and did all the same treatment as you, and finished in August still a wreck, constantly worried, just wanted to let you know that i admire ur confidence and acceptance with things :o)
krista <3

Anonymous said...
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Lisa said...

Finally someone with a positive attitude like myself! My 'dodgy' mole was discovered in 1995 after the birth of my son. Long story short the mole was removed and i was given the all clear then 2008 the cancer came back to the lymph nodes in my left groin. Since then i have undergone surgery, radiotherapy, chemotherapy with AZD randomized drug trial up until January 2010. Unfortunetly during chemo the cancer spread like wildfire and i was given the 'golden handshake' with a months to live prognosis. It was like "thanks for coming, but it hasn't worked, so nice knowing you" but i am very determined to prove the medical team wrong. To be honest i haven't felt this good in about 18 months. Sometimes i think my body was so exhausted and busy fighting the treatment it couldn't fight the cancer. The only treatment i'm having now is reiki and crystal healing bowls and i actually feel like i'm getting better!! And like you cancer has done me a favour because now i take everyday as it comes and enjoy every minute instead of rushing around in the constant rat race of life. You have even ispired me to start my own blog so thank you.

Anonymous said...

Wow! I loved reading your blog. Much inspiration. My husband was diagnosed with Metastatic Malignant Melanoma. Started from a mole on his chest that spread to the brain and currently has 9 brain tumors. He was diagnosed in September of 2008 as Stage IV and still is. He has undergone 15 rounds of Whole Brain Radiation, 3 emergency brain surgeries and 2 different types of Chemotherapy. We are in the process of getting Avastin covered by our insurers. He is a fighter much like yourself. He won't give up and is a walking testament of the power of positive thinking. We wish you all the best and thank you for your wonderful posts! Keep up the inspiration. Much luv and hugs.
The Thomsons'

Emily said...

Hey there,
Kinome, our common hairdresser as well as my super fun aunt, told me to check out your blog. I'm 19 and was diagnosed with Stage II Melanoma about a month ago and am still recovering from my super fun surgery. I enjoy your blog and your fun twist on a not so fun disease. Not much we can do about it so might as well have a good time with it. I catch myself getting mad at life sometimes since i am only 19 with this horrible disease. Your blog makes me realize that bodies are ment to break but that doesnt mean i should sit around at let it rust. Keep up the blogs and good luck with your treatment. I hope you love Kinome and her haircuts as much as I do! You are inspiring!

Rockstar said...

Hey there, I am 36, also a road runner and diagnosed 4 days ago with malignant melanoma cancer. Day 1 diagnosis, day 2 met with the surgeon and had the operation... it is now day 4 and everyone says it is all clear... an absolute answer to my prayers by why do I still feel slightly worried. I am still to see the oncologist on Friday. I am extremely positive,life is there to be enjoyed and lived. Whatever comes my way will be tackled with the full force of life its self. I admire your strength. blessings.

Liz said...

I feel like I just fell in a hole and everyone there totally gets me. Thank you so much for this...although my cancer is diff (Ovarian) the similarities for survival are there. I was diagnosed in June 2001 with Stage IIIc and given 3 years survival. It came back in 3 years but I survived it again and now at 9 years 5 mos have just been rediagnosed. I live today...sometimes better than others...but one thing I know is no one knows how long they have...I just will live every moment more ya..hope you will visit me at whencancerknocks!

SaulBecomesPaul said...

hey there, ive been recently diagnosed with melanoma also. i wrote an article on our blog that some may find helpful!! enjoy!

Anonymous said...

Hi. I am 40 years old and I was diagnosed w/ melanoma 2 1/2 months ago w/ Stage IIIb. Docs have still never found my "spot"... I'm the 7% of unknown origin. I woke up one day with a baseball size lump in my right armpit. 3 docs, ultrasounds, mammograms and 2 weeks later, I had surgery. It was determined to be melanoma. I had another 7 lymph nodes removed 2 weeks later... but it hadn't spread from the one.. thank goodness. I started Sylatron interferon treatment 2 weeks ago....some tough side effects... but I'm ready for the fight! said...

My son, Jordan had a recurrence of Melanoma about 5 months ago. It appeared originally as a mole on his temple that was removed with radical surgury about 4 years ago. Still... it managed to come back, this time in the lymph nodes in his neck. After having all lymph nodes on one side of his neck removed, he completed radiation treatment 2 or 3 weeks ago. On Friday he completed the first of his chemo (bio chemo therapy). He has started a video blog of his experience and is looking for comments and questions. I think that talking about what he is going through is good for him. You can access his blog at the following link...


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