In the past, I saw my regular doctor once or twice a year. Usually for running related stuff, aka broken toes, plantar fascitus (sp?). Up until this melanoma diagnosis, I had seen him twice this year. Once when I got the flu, for the first time ever, and the dermatologist referral. In a normal year, I probably would have seen him once more because I fell running and "busted" something. I tripled that in one day. Today!
So, here's the list of visits:
9:30am Two biopsies on my back. One a mere inch from my original site incision. Numbing shots have never hurt so much. One mole looks like the original one but smaller. The other is just.. well..... weird. (Pictures later after results are in). The tattoos will have to wait. The tiny, numbing needle about launched me off the table. Each! And! Every! Time! She! Used! It!
11:30 Lunch with one of my best friends. I'm already convinced it helped me survive the day. Talking with her reminds me of the power of friendship and laughter. And how incredibly blessed I am to have her, and all my other friends, in my life.
2:45 pm Primary doctor for a referral to the melanoma specialist, a formality required by my insurance, and some lymph node squeezing for good measure. Getting your neck squeezed like that is a weird sensation. Not painful, but uncomfortably weird. Not choking tight but survival instincts kick in. Underarms and groin were no biggie. After grabbing my neck, I was over the weirdness of the lymph node examination.
3:45 pm Yearly Ob/Gyn with some discussion of recent scientific correlation between melanoma and breast cancer. I walked out with a mammogram referral. Keep in mind, I had to lay on my freshly flayed back for this appointment and the numbing agent had definitely worn off. God bless the doctor for saying she'd go as fast as she could and boy, did she ever. And she did call my scar "cool." Think I'll keep her. She's going to consult an oncologist/geneologist for the whole melanoma/breast cancer testing.
These appointments may seem only slightly related, but they are so closely intertwined that I felt like I saw my 'medical team' today. Every minute of every appointment was some how related to my melanoma status. And I felt like all three appointments moved me closer to that wonderful Survivor Status I so desperately want one day in the near future. And none of the doctors wrote off my concerns, requests, or worries. What a wonderful feeling to walk away with. And I never once felt uncomfortable sharing these concerns, requests, or worries. That was a new, wonderful feeling too. I may be physically battered and bruised, literally, but mentally today was a huge step forward as my status as a patient.
So, the next step. I get the results from the biopsies on Friday or Monday. The results from the Pap in the next 3 to 4 weeks. The results of the mammogram 2 to 4 weeks after my appointment (pending). And I get the results of the referral with an appointment in the next few weeks. Whew. Now you know why I keep a journal and write it all down or tape the papers in as I get them. I strongly!!!!! recommend this for any patient facing a life altering diagnosis, no matter what it is.
Wednesday, July 27, 2011
Monday, July 25, 2011
Making assumptions
This journey has been a not so comfortable reminder about making assumptions. I can hear my mother's voice saying, "You know making an assumption makes something out of you and me." (My mother NEVER swore until I was an adult). So, every time I hear the word I wonder who is being made an a$$ out of... and lately, it's been me.
I'd like to think that I never took anything for granted before mid June. Yep, that was a not so nice slap across the face of realization. I sure take a lot less things for granted now that I view the world through different eyes. Melanoma shaded eyes.
When I had the first biopsy done of the site, it was the usual nickel sized wound. When the doctor told me I'd need another excision, I thought it'd take 10-20 minutes and leave me with a quarter sized wound. Oh ya, you've seen the pictures...... I was the a$$ in that scenario. In my own defense, I had just heard the words "malignant melanoma," aka "you have cancer." It still doesn't excuse my inability to ask what this procedure entailed.
So I walked in the doc's office completely oblivious about what was to come. I walked out 3 hours later just stunned at the amount of work that had just happened to my body. It was a very painful reminder of "Ask the question."
Every time I get uncomfortable asking a question and speaking up for my care, I remind myself of that experience. I need to know what is going on with me and lately, I have fully realized I DESERVE to know what is going on with me. I am fighting for my life. Some how, some way, I need those answers. I can't assume that I am in the 90% of the statistical survival rate for my initial biopsy. I need the answers, not assumptions, that I will not be in the 10% mortality rate. And that's assuming they do not find any other melanoma locations on the skin or lymph node issues. (No, I'm not assuming I'm clear until I see benign listed on lots of medical reports)
So, one last assumption..... I will survive melanoma. In this situation, the a$$ is going to be the disease. It assumed it could beat me and I have no intention of letting it. Melanoma picked the wrong girl to assume it could take out.
I'd like to think that I never took anything for granted before mid June. Yep, that was a not so nice slap across the face of realization. I sure take a lot less things for granted now that I view the world through different eyes. Melanoma shaded eyes.
When I had the first biopsy done of the site, it was the usual nickel sized wound. When the doctor told me I'd need another excision, I thought it'd take 10-20 minutes and leave me with a quarter sized wound. Oh ya, you've seen the pictures...... I was the a$$ in that scenario. In my own defense, I had just heard the words "malignant melanoma," aka "you have cancer." It still doesn't excuse my inability to ask what this procedure entailed.
So I walked in the doc's office completely oblivious about what was to come. I walked out 3 hours later just stunned at the amount of work that had just happened to my body. It was a very painful reminder of "Ask the question."
Every time I get uncomfortable asking a question and speaking up for my care, I remind myself of that experience. I need to know what is going on with me and lately, I have fully realized I DESERVE to know what is going on with me. I am fighting for my life. Some how, some way, I need those answers. I can't assume that I am in the 90% of the statistical survival rate for my initial biopsy. I need the answers, not assumptions, that I will not be in the 10% mortality rate. And that's assuming they do not find any other melanoma locations on the skin or lymph node issues. (No, I'm not assuming I'm clear until I see benign listed on lots of medical reports)
So, one last assumption..... I will survive melanoma. In this situation, the a$$ is going to be the disease. It assumed it could beat me and I have no intention of letting it. Melanoma picked the wrong girl to assume it could take out.
Friday, July 22, 2011
Pictures....
I promised to share pictures. The first one is reversed because I took it in the mirror. The next two were taken by my husband and young son. I obviously got over asking someone to help me take pictures. It's amazing how quickly I got over that. There are slightly graphic, so if you are at all uncomfortable, keep moving on.
The mole in the center is the one that was melanoma. Doesn't look like much huh?
These are my stitches two weeks after getting them and one day before getting them removed.
This is the area a week after having the stitches out. It's been another week and the redness is a little better, but not much.
Ironically, the mole that the scar is pointing to is one that will probably get the heave-ho in one of my upcoming biopsy appointments. And another one can be seen in the first picture just past my bra strap.
Now the joke I've been using is that I need a zipper tattoo for the scar. I don't really want a zipper tattoo but a tattoo of some type is in order......when I can fathom the thought a needle near that area. It might be a while for that, so I have a long time to decide. Right now, Rosie the Riveter is my leading idea. I have always loved that iconic design and now even more.
Ironically, the mole that the scar is pointing to is one that will probably get the heave-ho in one of my upcoming biopsy appointments. And another one can be seen in the first picture just past my bra strap.
Now the joke I've been using is that I need a zipper tattoo for the scar. I don't really want a zipper tattoo but a tattoo of some type is in order......when I can fathom the thought a needle near that area. It might be a while for that, so I have a long time to decide. Right now, Rosie the Riveter is my leading idea. I have always loved that iconic design and now even more.
Monday, July 18, 2011
And the journey starts..
How do you start a blog about melanoma?
Should I start with some words of wisdom? I guess I would if I had some.
Should I start with facts about melanoma? I would if my brain wasn't overwhelmed with them.
Should I start with my story? I guess that's the easiest, least emotional way to start this party.
So, here's my story. I'm 40. I have two wonderful, beautiful. amazing, bilingual children. (More on them later). I'm married to a man whom I still wonder how I caught. I'm a second year elementary teacher who knows she's lucky to have a job in California education right now. And now I'm a cancer warrior.
I can't say that I'm surprised that I was diagnosed with cancer. It's the only thing my family, that I know of, has ever died of. Really! We've avoided murder, car accidents, heart attacks and everything else. I thought my Grandfather might be the first to actually live past his 60's and not die of cancer. Unfortunately, it came back and got him in the end. Luckily, it was round 2 that got him at 82 years old.
My family has had:
breast cancer,
colorectal cancer,
jaw cancer,
throat/palette cancer,
prostrate cancer, and
of course, skin cancer.
And this is with limited knowledge of my birth mother's family history. Sure makes you want to join my family doesn't it? So, I never underwent testing to see if I had the "cancer gene." I know I have it.
In light of all of this somewhat limited history, I go in for regular OB/Gyn visits and I've already had a mammogram in my 30's. I had 4 skin biopsies about 3 years ago. I don't smoke, so the jaw, throat cancers are not a huge concern. And then I noticed another mole that didn't look quite right. That's what started this journey.
I went to my primary care physician for the dermatologist referral since it'd been more than a year from my last visit and my insurance requires it. It took me 2 months to see him. I told him why I was there and what I needed. He looked at the spot in question and said, "This one?" Yes, I reply. "It doesn't look like cancer." Luckily, I didn't rest on that initial assessment. I told him I needed to have it checked by a specialist and he wrote the referral. I saw the dermatologist about a month later and her comments were almost the same. Here was a person who saw skin conditions every day of her working life. And she wasn't worried. She did tell me that she wanted it off soon and we tried to schedule the biopsy for the following week. This was early May 2011. Unfortunately, the insurance company had an issue with her notes and denied the biopsy without further notes. To make the original appointment I had called in a personal favor and had a sub cover the first half of a work day for me. I got a call about a half hour before my appointment to cancel it. Due to schedules, mine and the doctors, I rescheduled the biopsy for the week after summer break started, mid June. I still wonder if that 6 week delay made a significant difference.
The biopsy went off without a hitch. The usual discomfort, maximum numbing agent (I'm resistant to it) and out the door I went. I asked about results and she said she usually tells her patients when they come in for wound re-check but if it made me nervous, I could call on Friday and see if the lab results were back. I told her I wasn't worried and would just see her the following week. I knew I was headed up to the Sierra Mountains, where there is blessedly no cell signal and no phones and no TV. I honestly was not worried. I was worried three years ago when I did this the first four times, but this time, phhft - not worried.
I can honestly say that I've never had a doctor call me personally. Of course, I've had lots of nurses and medical assistants call me over the years, but never the doctor herself/himself. The dermatologist tried to call me twice on Friday night. Once at 630p.m. and again at 730p.m., both time giving me direct numbers to her office. I got these messages on Sunday afternoon while driving back to civilization. I had my Father-in-law in the car with me and he is a multi-cancer survivor and was my sounding board. We talked through what the messages might mean and we settled on an infection that would benefit from immediate antibiotics or basal cell sarcoma, the least malicious of skin cancers. I brought up my niggling fears of melanoma and he reminded me how statistically rare it was especially for someone of my young age. It was a long night of worrying but because I wasn't worried about "the worst," I will say I slept pretty well. Ironically, it would be my last night of decent sleep to date.
So, what's it like when you hear those words? I'm sure it's different and exactly the same for all of us. The disbelief, the shock, the why-me. the never-forget-where-you-were moment in time. I had made myself wait until after 9a.m. to call. It worked out that the boys were in swim lessons that week and my husband called in sick to work to see the doctor himself. So, I was sitting poolside, on my cell phone when I called the doctor back. I have never been transferred to a doctor, let alone to one so quickly. Her words were kind and to the point. "The pathology report came in and you have malignant melanoma." (At least that's the words I remember her saying). At this point, I couldn't breath. I couldn't think, I didn't know what to do. My world had stopped. I had cancer. Skin Cancer. The rarest but most deadly version.
Luckily, the doctor took over the conversation and told me that my next appointment would no longer be a re-check but an extensive excision to remove a large section of the area of my back by my left shoulder blade. I was just aware enough to realize I wasn't with it and I requested a copy of the pathology report. I'm so glad I did because when my brain kicked in later, this piece of paper because the basis of my battle plans.
I had made the phone call to the doctor on my cell phone, and to not be rude, I had walked away from all of the other parents who were sitting pool side watching their kids start their lessons. After disconnecting the call, I walked back over to where my husband was sitting and plopped down. I couldn't breath, I couldn't feel my body, I couldn't even process what I had just heard. My husband looked at me and said, "What did she say?" I choked back a sob, leaned on his shoulder and said, "Melanoma." He put his arm around me and said the best thing he could have, "I'm sorry." We sat in silence for many minutes, me wiping tears from behind my sunglasses and him with his arm around me offering me comfort the only way he knew how.
This is how my journey started. I know I will never, ever forget every minute detail about that pool deck, what I was wearing, the details, the feelings. It is a life altering moment. The same as when your children are born. And as I sat poolside that morning, I watched my children swim without any idea of how their mother's life had just changed. And as I continued to watch them swim, I went into battle mode. I refused to entertain the idea that my children, 6 and 8 years old, would be left on this earth without their mother. I decided right then and there, I would do everything I could to be a pain in their backsides for many, many, many years to come. And I haven't stopped fighting for that 3 weeks later.
I decided to start a blog to allow myself a place to share and a place for others to learn from. I figure that's the teacher in me. If I can write something, just one thing, that convinces someone to see a dermatologist, to trust their instincts, or to know they aren't alone... then I will be thrilled. If no one sees this, that's ok too. I am writing as much for me as I am for others. I will post the few pictures I have because even now, when I search melanoma photographs, none of them look like mine. I will update as I go and share what I can.
The journey has only begun but I plan on winning!
Should I start with some words of wisdom? I guess I would if I had some.
Should I start with facts about melanoma? I would if my brain wasn't overwhelmed with them.
Should I start with my story? I guess that's the easiest, least emotional way to start this party.
So, here's my story. I'm 40. I have two wonderful, beautiful. amazing, bilingual children. (More on them later). I'm married to a man whom I still wonder how I caught. I'm a second year elementary teacher who knows she's lucky to have a job in California education right now. And now I'm a cancer warrior.
I can't say that I'm surprised that I was diagnosed with cancer. It's the only thing my family, that I know of, has ever died of. Really! We've avoided murder, car accidents, heart attacks and everything else. I thought my Grandfather might be the first to actually live past his 60's and not die of cancer. Unfortunately, it came back and got him in the end. Luckily, it was round 2 that got him at 82 years old.
My family has had:
breast cancer,
colorectal cancer,
jaw cancer,
throat/palette cancer,
prostrate cancer, and
of course, skin cancer.
And this is with limited knowledge of my birth mother's family history. Sure makes you want to join my family doesn't it? So, I never underwent testing to see if I had the "cancer gene." I know I have it.
In light of all of this somewhat limited history, I go in for regular OB/Gyn visits and I've already had a mammogram in my 30's. I had 4 skin biopsies about 3 years ago. I don't smoke, so the jaw, throat cancers are not a huge concern. And then I noticed another mole that didn't look quite right. That's what started this journey.
I went to my primary care physician for the dermatologist referral since it'd been more than a year from my last visit and my insurance requires it. It took me 2 months to see him. I told him why I was there and what I needed. He looked at the spot in question and said, "This one?" Yes, I reply. "It doesn't look like cancer." Luckily, I didn't rest on that initial assessment. I told him I needed to have it checked by a specialist and he wrote the referral. I saw the dermatologist about a month later and her comments were almost the same. Here was a person who saw skin conditions every day of her working life. And she wasn't worried. She did tell me that she wanted it off soon and we tried to schedule the biopsy for the following week. This was early May 2011. Unfortunately, the insurance company had an issue with her notes and denied the biopsy without further notes. To make the original appointment I had called in a personal favor and had a sub cover the first half of a work day for me. I got a call about a half hour before my appointment to cancel it. Due to schedules, mine and the doctors, I rescheduled the biopsy for the week after summer break started, mid June. I still wonder if that 6 week delay made a significant difference.
The biopsy went off without a hitch. The usual discomfort, maximum numbing agent (I'm resistant to it) and out the door I went. I asked about results and she said she usually tells her patients when they come in for wound re-check but if it made me nervous, I could call on Friday and see if the lab results were back. I told her I wasn't worried and would just see her the following week. I knew I was headed up to the Sierra Mountains, where there is blessedly no cell signal and no phones and no TV. I honestly was not worried. I was worried three years ago when I did this the first four times, but this time, phhft - not worried.
I can honestly say that I've never had a doctor call me personally. Of course, I've had lots of nurses and medical assistants call me over the years, but never the doctor herself/himself. The dermatologist tried to call me twice on Friday night. Once at 630p.m. and again at 730p.m., both time giving me direct numbers to her office. I got these messages on Sunday afternoon while driving back to civilization. I had my Father-in-law in the car with me and he is a multi-cancer survivor and was my sounding board. We talked through what the messages might mean and we settled on an infection that would benefit from immediate antibiotics or basal cell sarcoma, the least malicious of skin cancers. I brought up my niggling fears of melanoma and he reminded me how statistically rare it was especially for someone of my young age. It was a long night of worrying but because I wasn't worried about "the worst," I will say I slept pretty well. Ironically, it would be my last night of decent sleep to date.
So, what's it like when you hear those words? I'm sure it's different and exactly the same for all of us. The disbelief, the shock, the why-me. the never-forget-where-you-were moment in time. I had made myself wait until after 9a.m. to call. It worked out that the boys were in swim lessons that week and my husband called in sick to work to see the doctor himself. So, I was sitting poolside, on my cell phone when I called the doctor back. I have never been transferred to a doctor, let alone to one so quickly. Her words were kind and to the point. "The pathology report came in and you have malignant melanoma." (At least that's the words I remember her saying). At this point, I couldn't breath. I couldn't think, I didn't know what to do. My world had stopped. I had cancer. Skin Cancer. The rarest but most deadly version.
Luckily, the doctor took over the conversation and told me that my next appointment would no longer be a re-check but an extensive excision to remove a large section of the area of my back by my left shoulder blade. I was just aware enough to realize I wasn't with it and I requested a copy of the pathology report. I'm so glad I did because when my brain kicked in later, this piece of paper because the basis of my battle plans.
I had made the phone call to the doctor on my cell phone, and to not be rude, I had walked away from all of the other parents who were sitting pool side watching their kids start their lessons. After disconnecting the call, I walked back over to where my husband was sitting and plopped down. I couldn't breath, I couldn't feel my body, I couldn't even process what I had just heard. My husband looked at me and said, "What did she say?" I choked back a sob, leaned on his shoulder and said, "Melanoma." He put his arm around me and said the best thing he could have, "I'm sorry." We sat in silence for many minutes, me wiping tears from behind my sunglasses and him with his arm around me offering me comfort the only way he knew how.
This is how my journey started. I know I will never, ever forget every minute detail about that pool deck, what I was wearing, the details, the feelings. It is a life altering moment. The same as when your children are born. And as I sat poolside that morning, I watched my children swim without any idea of how their mother's life had just changed. And as I continued to watch them swim, I went into battle mode. I refused to entertain the idea that my children, 6 and 8 years old, would be left on this earth without their mother. I decided right then and there, I would do everything I could to be a pain in their backsides for many, many, many years to come. And I haven't stopped fighting for that 3 weeks later.
I decided to start a blog to allow myself a place to share and a place for others to learn from. I figure that's the teacher in me. If I can write something, just one thing, that convinces someone to see a dermatologist, to trust their instincts, or to know they aren't alone... then I will be thrilled. If no one sees this, that's ok too. I am writing as much for me as I am for others. I will post the few pictures I have because even now, when I search melanoma photographs, none of them look like mine. I will update as I go and share what I can.
The journey has only begun but I plan on winning!
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