Good piece I thought, and very informative on how skin cancer and melanoma spreads.
I plan on doing the drawing for the free stuff this week (or weekend)! Sorry, it's just that life is crazy now that school is back in session. For that reason, I'm still taking entries and will put your name in right up until the last moment.
Hope all is well with all of you!
-MM
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Monday, August 25, 2008
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.
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.
Wednesday, February 21, 2007
Hindsight is 5 p.m.
I saw this last night, a remnant of the "old" website, before the revamp. It was written just 2 months after the diagnosis, and I think it's pretty interesting. See what you think.

-------------------------------
Hi, my name is Lori, aka Miss Melanoma. As you might have guessed I have Melanoma. That's just a fact, not a death sentence. I started this site for a couple of reasons. First, once I found out I had Melanoma I searched the internet and couldn’t find one local place for people dealing with melanoma and didn’t have much luck. Second, I wanted a place where people with Melanoma could come, share stories, read about my progress as I go through treatment and share along in my blog area. I feel like this has been an awesome experience, and I've grown from it and learned so much from it. I couldn't imagine not sharing the whole thing, the good and the ugly, so that it wouldn't be lost just on me.
So I had this mole. :) Just your run-of-the-mill mole, nothing super special about it- a little mole on my baby toe. And yeah, the mole started to grow, and then a year (or three) later, it started to peel, and bleed, and I happened to be working for a doctor (or- let’s just be honest here- I probably never would’ve even had it looked at even then) who took a look at it and sent me to a

-------------------------------
Hi, my name is Lori, aka Miss Melanoma. As you might have guessed I have Melanoma. That's just a fact, not a death sentence. I started this site for a couple of reasons. First, once I found out I had Melanoma I searched the internet and couldn’t find one local place for people dealing with melanoma and didn’t have much luck. Second, I wanted a place where people with Melanoma could come, share stories, read about my progress as I go through treatment and share along in my blog area. I feel like this has been an awesome experience, and I've grown from it and learned so much from it. I couldn't imagine not sharing the whole thing, the good and the ugly, so that it wouldn't be lost just on me.
So I had this mole. :) Just your run-of-the-mill mole, nothing super special about it- a little mole on my baby toe. And yeah, the mole started to grow, and then a year (or three) later, it started to peel, and bleed, and I happened to be working for a doctor (or- let’s just be honest here- I probably never would’ve even had it looked at even then) who took a look at it and sent me to a
dermatologist friend of his across the street to have it removed. So the dermatologist shoots the
mole up with lidocaine, slices it off with a razor, puts a band-aid on the toe, and that was it. I never once, not even for a second, thought about the mole after that. Never wondered what the path report would be, never thought of asking my doctor the results, never called to check up on it, never considered that I could have cancer. I’m not really sure why, but now I do know a lot more about this sort of thing. Now I know that skin cancer typically strikes women in their thirties (even though I obviously had it before then), and is a leading cause of death among women in that age group. Now I know that cancer hits all kinds of people at all ages in life all the time. Good people, young people, healthy people included. Now I know that cancer, like so many other things that you can come across in your lifetime, can be a blessing disguised as a bump in the road.
mole up with lidocaine, slices it off with a razor, puts a band-aid on the toe, and that was it. I never once, not even for a second, thought about the mole after that. Never wondered what the path report would be, never thought of asking my doctor the results, never called to check up on it, never considered that I could have cancer. I’m not really sure why, but now I do know a lot more about this sort of thing. Now I know that skin cancer typically strikes women in their thirties (even though I obviously had it before then), and is a leading cause of death among women in that age group. Now I know that cancer hits all kinds of people at all ages in life all the time. Good people, young people, healthy people included. Now I know that cancer, like so many other things that you can come across in your lifetime, can be a blessing disguised as a bump in the road.______________________________________
I look back, just two months into this thing, and know that I was a typical patient. Like so many people I lived under that little cliché you hear people say all the time: I was so caught up in my little life, just doing my day-to-day thing and worrying myself over the intricacies of what I had
to get done that I just never thought cancer would “happen” to me. The doctors would later ask, Why didn’t you have it looked at sooner? And there would be no answer, because the answer is in the million daily doings that cover the not-doings.
to get done that I just never thought cancer would “happen” to me. The doctors would later ask, Why didn’t you have it looked at sooner? And there would be no answer, because the answer is in the million daily doings that cover the not-doings.A week or so later my doctor calls me into his office. This doctor, who is also a very good friend of mine, has this horrible sad look on his face and he says to me, Please sit down, Lori, and he pauses what seems like forever, and, rubbing his eyebrows and holding his breath he finally says that he’s so sorry to be the one to tell me that I have cancer.
I first think: it’s not really cancer, not the kind of cancer other people get. I’m 30. I can’t have that kind of cancer. Not the kind of cancer that kills people, which meant, basically, I am invincible.
Then, after I guess a few milli-seconds, I starting with all the other racing thoughts. I guess it takes a second to really realize that there is this extraordinary chance that the disease no one wants to get has already taken over part of your body and you really may die.
Then- and I'll never forget this- then I thought about my friends. How I was gonna tell them? How could I tell them? And over and over and over I just kept saying, I can’t put them through this. What was I going to do?
__________________________________________
That's just a snip-it, but an interesting look, I think, of life after dx and before treatment. How crazy things are?
-L
Labels:
ABCDE's of melanoma,
death,
diagnosis,
fears,
skin cancer
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