I admit it, this blog has suffered. Greatly. It is partly intentional, partly unintentional. I still make an effort to not let my life be controlled by the monster. Yep, 5 years later it's still a valid, constant fight. So I don't write, research, or concentrate on melanoma for as many days as I can... in a row. Luckily, those days are slowly adding up to more each time. But there's always something that ends the streak.
A quick update since I wrote forever ago...... I still go in for biopsies about every 4 months. Sometimes, 3 months and rarely 6 months. The biopsies are a mix of "punch" sites and "shave" sites. So, I end up with a few stitches each time. No biggie, I got this routine down. I've yet to take out a single stitch but that's more because I want to be a good patient and less about not knowing how. And it's a set of eyes on me one more time even though it's only about 5 minutes.
So, to "the first" this last visit. In previous blogs, I've written about my on-going 50% benign/dysplastic rate. The visit last week led to two sites being biopsied but one of them had already been biopsied about a year ago. The "mole" had grown back through the site. The last time this occurred (on my back), the second biopsy revealed that the monster was just a few cells from rearing its ugly head. After a long talk with the doctor, we decided to play it safe and re-biopsy the site since it had been mildly atypical the first time. The second site was on my upper back area about 4 inches above my original site.
The doc's assistant called a few days later and I braced for impact because it was too quick of a phone call. And wouldn't you know it, both sites were benign. BOTH! I haven't had a full set of benign results EVER in this battle. I couldn't believe my ears but I listened to the voicemail several times. It's definitely a first that I'll take but don't kid yourself about it helping me to relax on trusting the monster to not be hiding still.
My heart still doesn't trust the results. The news seems too good to be true. This is what survivors talk about in always expecting the worst, bracing for it, and not believing it won't happen again. I totally get that now since I'd never had this experience before. Again, more learning that no one can explain fully to you until you go through it yourself. Instead of thinking I'm "getting healthier" I think, "We missed it this time" and "am I targeting the wrong sites." And having regular, atypical results constantly remind me the monster is hiding.
Yes, I'll enjoy my benign results. My next visit is 4 months away... 24 days before my 5th anniversary. I already have a site that is freaking me out but I'll wait to see if it's a legit fear or the paranoia getting the better of me again. I'll write more about what facing 5 years is doing to my brain in the next entry. It's ain't pretty and deserves a full brain vomit on the page.
Showing posts with label melanoma. Show all posts
Showing posts with label melanoma. Show all posts
Tuesday, March 15, 2016
Saturday, December 20, 2014
Higher power
It took me a while to process this post through my head.... and the crazy, busy weeks filled in the rest of the time.
On my way to my appointment to have the second procedure on my leg site, I was reminded that there is something bigger than me out there and I need to have faith. Keep in mind, I'm not the most religious person but I do have my own sense of faith. I believe there is a higher power but I haven't reconciled who she or he is yet. But I believe and what happened on the way to my appointment reminded me it's ok to let go sometimes and just lean on your inner power. So here's what happened:
I left work a little early because if I didn't, something would happen and I'd be late. I hit the road and tears were very close to the surface from the stress and sadness that this is my life now and the impending pain I knew was coming shortly. In order to quiet the voice in my head, I turned the radio up loud. Really loud. Ear hurting loud. I didn't care what was on but I needed the music to focus on.
And then this song came on:
"I Lived" by One Republic
On my way to my appointment to have the second procedure on my leg site, I was reminded that there is something bigger than me out there and I need to have faith. Keep in mind, I'm not the most religious person but I do have my own sense of faith. I believe there is a higher power but I haven't reconciled who she or he is yet. But I believe and what happened on the way to my appointment reminded me it's ok to let go sometimes and just lean on your inner power. So here's what happened:
I left work a little early because if I didn't, something would happen and I'd be late. I hit the road and tears were very close to the surface from the stress and sadness that this is my life now and the impending pain I knew was coming shortly. In order to quiet the voice in my head, I turned the radio up loud. Really loud. Ear hurting loud. I didn't care what was on but I needed the music to focus on.
And then this song came on:
[Verse 1]
Hope when you take that jump
You don't fear the fall
Hope when the water rises
You build a wall
Hope when the crowd screams out
They're screaming your name
Hope if everybody runs
You choose to stay
Hope that you fall in love
And it hurts so bad
The only way you can know
Is give it all you have
And I hope that you don't suffer
But take the pain
Hope when the moment comes
You'll say...
[Chorus]
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived
[Verse 2]
Hope that you spend your days
But they all add up
And when that sun goes down
Hope you raise your cup
I wish that I could witness
All your joy and all your pain
But until my moment comes
I'll say...
Hope when you take that jump
You don't fear the fall
Hope when the water rises
You build a wall
Hope when the crowd screams out
They're screaming your name
Hope if everybody runs
You choose to stay
Hope that you fall in love
And it hurts so bad
The only way you can know
Is give it all you have
And I hope that you don't suffer
But take the pain
Hope when the moment comes
You'll say...
[Chorus]
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived
[Verse 2]
Hope that you spend your days
But they all add up
And when that sun goes down
Hope you raise your cup
I wish that I could witness
All your joy and all your pain
But until my moment comes
I'll say...
[Chorus]
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived
I didn't really hear the song until the line about taking the pain and then I really started to listen. And hear the message in the song. Then I started to smile. I'd never heard this song before, I wouldn't have heard it if I hadn't left early, or been on that particular station, or so on. In my family, we call these moments "God winks." I don't remember where the term comes from but it refers to moments when God is sending us a message if we are listening closely. You could call it Fate or Karma or Faith or whatever but it was a message I chose to listen to.
If that wasn't enough, there was something else too. It was a miserable, rainy day that afternoon. Mood fitting perfect. I happened to look in my rearview mirror during this song and saw the most beautiful, full rainbow in the sky behind me. I couldn't believe it. I kept looking in my mirror to make sure it was real. It was and combined with the line "I swear I lived" I was reminded of what this appointment was truly about. The fight to live, to survive, and to thrive.
I don't believe what happened was an accident. Was it God, Buddha, Mohammed, or someone else? My faith says yes because that's how I chose to see it. As a message to fight on, tough out the rough moments, embrace the pain to get the healing, and know that in the end I would come out just fine.
So, I'm 2 weeks past the procedure. In fact, I just got the stitches out from it 36 hours ago. The wound looks good and the margins were all clear. So, the physical side is basically done but the emotional, mental message of that day still linger. In some moments, I can't even believe it happened. It's too freaky to understand if I think too long about all the things that had to happen for it to occur. So, I don't think, I just believe. And fight on so that I can say that "I lived" and enjoyed the ride.
Thursday, November 13, 2014
Well, this sucks...
The doc called today with my results. The good news is that I got my 50% benign results back, at least for one visit. The biopsy at my original site revealed old scar tissue that healed "weird" and no signs of any mutating cells or the monster. Whew. The good news.
And now the bad, the site on my thigh. Not so lucky there. Again, this biopsy revealed a dysplastic nevi, yada, yada, yada.... that requires a second, more invasive procedure to make sure the monster is not lurking deeper within. So, I go back in about 2 weeks to get a good chunk of my leg cut out. Oh joy. Yes, I'm being snarky and immature and I'm ok with that right now. I would go sooner but I start a new job on Monday and asking for time off the first week doesn't work for me. The week after is Thanksgiving and the doc is booked or out, so the following week it is. Although I go just before Thanksgiving to get my stitches out on my back but that's a RN visit that will take maybe 5 minutes. If I could reach the area, I'd take them out myself but I won't. And because the swelling is pretty impressive. A lesson in messing with old scars.
So, I poured myself a nice glass of wine when I got home. I'll be over my temper tantrum soon. I always allow myself to be human and grieve my lot in life in this battle and then I move on and keeping fighting the good fight. Because I STILL refuse to give up!
And now the bad, the site on my thigh. Not so lucky there. Again, this biopsy revealed a dysplastic nevi, yada, yada, yada.... that requires a second, more invasive procedure to make sure the monster is not lurking deeper within. So, I go back in about 2 weeks to get a good chunk of my leg cut out. Oh joy. Yes, I'm being snarky and immature and I'm ok with that right now. I would go sooner but I start a new job on Monday and asking for time off the first week doesn't work for me. The week after is Thanksgiving and the doc is booked or out, so the following week it is. Although I go just before Thanksgiving to get my stitches out on my back but that's a RN visit that will take maybe 5 minutes. If I could reach the area, I'd take them out myself but I won't. And because the swelling is pretty impressive. A lesson in messing with old scars.
So, I poured myself a nice glass of wine when I got home. I'll be over my temper tantrum soon. I always allow myself to be human and grieve my lot in life in this battle and then I move on and keeping fighting the good fight. Because I STILL refuse to give up!
Sunday, November 9, 2014
Ding, ding... next round
This past week was another visit to the dermatologist and the matching biopsy accessories to go with it. (Yes, I know I only crack myself up sometimes.)
I walked out after 2 biopsies and just one new scar. One of the biopsies is at my original site. There's a section I've never liked and the doc agreed this time. So, these stitches are where there were already some so no new scar there. The other site is on my upper thigh. I have to admit to never having a biopsy site not be painful, so it's wonderful that I don't notice this one at all. It's finally jeans weather in Northern California so I don't have to explain the bandaging to anyone either. So, basically, it's a "low maintenance" biopsy site. I wish more were like this.
This visit was good for my mental health also. I finally was completely honest with the doc about my fears that we are losing ground to the monster because I'm now getting so few benign results. She was sympathetic and understanding and did not downplay my fears. The doc also didn't make false promises or gloss over the issue. She said that we are being proactive and that's the best we can do to make sure the monster doesn't come back. We both agreed that staying on the 3 month cycle was the best course still until something changes. I'm hoping that change is the reappearance of more benign results but time will tell.
Again, I have an awesome doc. She's going to call with results this way no matter what they may be. That's pretty good service in my book. Should I expect this service as a survivor? Some would debate it. I'll just say I don't expect it (in our current health care system) but I sure appreciate it. I also know she'd love to call with good news as much as understanding bad news is best delivered by a person and not a letter.
I walked out after 2 biopsies and just one new scar. One of the biopsies is at my original site. There's a section I've never liked and the doc agreed this time. So, these stitches are where there were already some so no new scar there. The other site is on my upper thigh. I have to admit to never having a biopsy site not be painful, so it's wonderful that I don't notice this one at all. It's finally jeans weather in Northern California so I don't have to explain the bandaging to anyone either. So, basically, it's a "low maintenance" biopsy site. I wish more were like this.
This visit was good for my mental health also. I finally was completely honest with the doc about my fears that we are losing ground to the monster because I'm now getting so few benign results. She was sympathetic and understanding and did not downplay my fears. The doc also didn't make false promises or gloss over the issue. She said that we are being proactive and that's the best we can do to make sure the monster doesn't come back. We both agreed that staying on the 3 month cycle was the best course still until something changes. I'm hoping that change is the reappearance of more benign results but time will tell.
Again, I have an awesome doc. She's going to call with results this way no matter what they may be. That's pretty good service in my book. Should I expect this service as a survivor? Some would debate it. I'll just say I don't expect it (in our current health care system) but I sure appreciate it. I also know she'd love to call with good news as much as understanding bad news is best delivered by a person and not a letter.
Thursday, July 31, 2014
Stitches out, lab report in
Today was the day I finally got the stitches out on my back. Sigh! Having a wound right at your waistline is not fun. Unfortunately, the skin isn't totally stretched out yet, so I have to be careful to not bend too far forward too fast and pull it open. The joys of asking your skin to cover for you.. literally.
Last week, while on vacation, I got the phone call that the second (third really) biopsy at that site finally had clear margins. In my previous post I talked about not getting any details or the lab reports. Well, I got them today and I'm glad I didn't. Today, I'm in the healing phase, I'm moving on but seeing how close the monster was in black and white is still terrifying and sucks.
The short version of the lab report showed that I had "moderate cytologic atypia of the epidermal melanocytes" and all other sorts of fancy words about my "moderately atypical dysplastic compound nevus." Are your eyes rolling in the back of your head yet? Basically, a "mole" that was less than a year old had changed at the cellular level and was progressing at a rate that would have probably been melanoma soon. Way too soon. I've already done a lot of research and stopped when one report showed that I'm now 46 times more likely to have melanoma reappear that I was before. Some doctors might even label this site "melanoma in situ." Man, that's even hard to type let alone wrap my head around. I'm lucky that none of my other biopsy sites show the moles coming back and none had this level of change, especially so quickly.
I'm sitting here trying to process this and feeling like I dodged a huge bullet. The monster was clearly lurking and growing while I lived my life unaware. That's so hard to understand and deal with. Is the monster in another site that I haven't "noticed" yet or was this it? No one knows. Not me, not the doctors, no one. And that is the frustrating part of having melanoma 3 years ago and finding out that the monster was back hiding in/on you. As a kid, I thought the monster was under my bed, as an adult I think (and now know, twice) that it's hiding under my skin.
So, there goes my 6 month visits. I'm back on the three month plan. I already have my next appointment for early November because I just couldn't do it on Halloween. Any teacher will tell you that's an amazingly tough day for us and there was no way I'd have the mental strength to handle both a sugar-laden holiday and biopsies on the same day. I've been through this enough (teaching and biopsies) to know better. I go back a few days before Veteran's Day. I figure an extra day off never hurt if they have to re-excise something again. The things you have to think about when this is your life.
My mantra has always been "Not without a fight" and I'm sure not quitting now that I know the monster is still lurking and waiting for me to give up and quit fighting. Well, the melanoma monster can kiss my a$$ because I'm not done fighting. Especially now.
Last week, while on vacation, I got the phone call that the second (third really) biopsy at that site finally had clear margins. In my previous post I talked about not getting any details or the lab reports. Well, I got them today and I'm glad I didn't. Today, I'm in the healing phase, I'm moving on but seeing how close the monster was in black and white is still terrifying and sucks.
The short version of the lab report showed that I had "moderate cytologic atypia of the epidermal melanocytes" and all other sorts of fancy words about my "moderately atypical dysplastic compound nevus." Are your eyes rolling in the back of your head yet? Basically, a "mole" that was less than a year old had changed at the cellular level and was progressing at a rate that would have probably been melanoma soon. Way too soon. I've already done a lot of research and stopped when one report showed that I'm now 46 times more likely to have melanoma reappear that I was before. Some doctors might even label this site "melanoma in situ." Man, that's even hard to type let alone wrap my head around. I'm lucky that none of my other biopsy sites show the moles coming back and none had this level of change, especially so quickly.
I'm sitting here trying to process this and feeling like I dodged a huge bullet. The monster was clearly lurking and growing while I lived my life unaware. That's so hard to understand and deal with. Is the monster in another site that I haven't "noticed" yet or was this it? No one knows. Not me, not the doctors, no one. And that is the frustrating part of having melanoma 3 years ago and finding out that the monster was back hiding in/on you. As a kid, I thought the monster was under my bed, as an adult I think (and now know, twice) that it's hiding under my skin.
So, there goes my 6 month visits. I'm back on the three month plan. I already have my next appointment for early November because I just couldn't do it on Halloween. Any teacher will tell you that's an amazingly tough day for us and there was no way I'd have the mental strength to handle both a sugar-laden holiday and biopsies on the same day. I've been through this enough (teaching and biopsies) to know better. I go back a few days before Veteran's Day. I figure an extra day off never hurt if they have to re-excise something again. The things you have to think about when this is your life.
My mantra has always been "Not without a fight" and I'm sure not quitting now that I know the monster is still lurking and waiting for me to give up and quit fighting. Well, the melanoma monster can kiss my a$$ because I'm not done fighting. Especially now.
Sunday, July 13, 2014
Revisiting the past
When you haven't written anything in this long, it's hard to know where to start.... so I'm going to start at the reason I'm posting again. No, the monster isn't back but his ugly stepsister is.
Here's the story: I've been undergoing biopsies every 3 to 6 months this last few years. Unfortunately, 50% come back as dysplastic which puts me at a much higher risk of melanoma, yada, yada, yada. Not cancer but "you're going to get cancer" results. And yet, there's no research to put a timeline on these moles going bad.
So, I was cruising along knowing that at least half of the moles being removed were ones that should be. And then this last round. Bam! Knocked off my feet.
A slight back story first. I changed dermatologists because my primary care doc changed medical groups and I felt like another fresh set of eyes was worth trying. I knew I could change both docs if I wasn't happy. Of course, as a new patient - even one with melanoma history - you have to wait a while for an appointment. When I made the appointment in April the first available she had was in June. 6/26 = my three year anniversary. Nope, I wasn't going to mess with that karma.
I went in and had a great visit but found out this doc isn't one to mess around (which I love) and I walked out of my 3-year anniversary appointment with three new biopsies to celebrate. Again, not arguing with karma here.
The nurse called a week later and said that one of the 3 was dysplastic, another medium grade, one is benign and the third needs a more extensive procedure to remove more surrounding area because "it is an atypical mole." At that point, the world stopped moving. I was just together enough to directly ask if it was cancer and she said no but I wasn't thinking well enough to get more details. This week, I have an hour long procedure to remove a chunk of my lower back. Right at the waistline. Not looking forward to it.
I'm sure someone will wonder why I haven't called back for more information. Why? Because I know myself well enough in this fight to know it wouldn't do me any good. I'll get the lab results when I go in for the appointment. I'll have my journal with me and will take lots of notes to review later when I've forgotten some details. Why? Because they won't have all the answers for me now. They don't know how long I won't be able to run or how long until I can bend fully at the waist. So, I didn't ask. Why? Because cancer sucks and anything atypical enough to require an hour removal gives me enough information on the "cluster f***" scale to deal with. More information is not my friend right now. I'm eating this elephant one bite at a time.
With any luck, I'm seriously over-thinking this and will be running again two days after the procedure with 4 new stitches. There are 2 there now. Is that possible? Not very likely which is why I've made a few adjustments and bought a few skirts/pants that don't have true waistbands to rub, told my running buddies to not wait for me, and delayed leaving on a vacation by a few days. I just hope and believe that this procedure caught the monster before he was fully developed and could cause a bigger battle. That's what I'm going into this appointment believing. That's the first bite/step.
I'll be posting more in the coming days about my 2 year anniversary and how I had to call back a nurse to apologize to. And at some point, I'll vent out the whole "it's just skin cancer" comments I still can't deal with.
My mantra still: Not Without A Fight!
Here's the story: I've been undergoing biopsies every 3 to 6 months this last few years. Unfortunately, 50% come back as dysplastic which puts me at a much higher risk of melanoma, yada, yada, yada. Not cancer but "you're going to get cancer" results. And yet, there's no research to put a timeline on these moles going bad.
So, I was cruising along knowing that at least half of the moles being removed were ones that should be. And then this last round. Bam! Knocked off my feet.
A slight back story first. I changed dermatologists because my primary care doc changed medical groups and I felt like another fresh set of eyes was worth trying. I knew I could change both docs if I wasn't happy. Of course, as a new patient - even one with melanoma history - you have to wait a while for an appointment. When I made the appointment in April the first available she had was in June. 6/26 = my three year anniversary. Nope, I wasn't going to mess with that karma.
I went in and had a great visit but found out this doc isn't one to mess around (which I love) and I walked out of my 3-year anniversary appointment with three new biopsies to celebrate. Again, not arguing with karma here.
The nurse called a week later and said that one of the 3 was dysplastic, another medium grade, one is benign and the third needs a more extensive procedure to remove more surrounding area because "it is an atypical mole." At that point, the world stopped moving. I was just together enough to directly ask if it was cancer and she said no but I wasn't thinking well enough to get more details. This week, I have an hour long procedure to remove a chunk of my lower back. Right at the waistline. Not looking forward to it.
I'm sure someone will wonder why I haven't called back for more information. Why? Because I know myself well enough in this fight to know it wouldn't do me any good. I'll get the lab results when I go in for the appointment. I'll have my journal with me and will take lots of notes to review later when I've forgotten some details. Why? Because they won't have all the answers for me now. They don't know how long I won't be able to run or how long until I can bend fully at the waist. So, I didn't ask. Why? Because cancer sucks and anything atypical enough to require an hour removal gives me enough information on the "cluster f***" scale to deal with. More information is not my friend right now. I'm eating this elephant one bite at a time.
With any luck, I'm seriously over-thinking this and will be running again two days after the procedure with 4 new stitches. There are 2 there now. Is that possible? Not very likely which is why I've made a few adjustments and bought a few skirts/pants that don't have true waistbands to rub, told my running buddies to not wait for me, and delayed leaving on a vacation by a few days. I just hope and believe that this procedure caught the monster before he was fully developed and could cause a bigger battle. That's what I'm going into this appointment believing. That's the first bite/step.
I'll be posting more in the coming days about my 2 year anniversary and how I had to call back a nurse to apologize to. And at some point, I'll vent out the whole "it's just skin cancer" comments I still can't deal with.
My mantra still: Not Without A Fight!
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