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

[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...

[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 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.

Trying to prepare

Tomorrow afternoon, I go in to have a chunk taken out of my leg and sent off to the lab in hopes it shows clear margins all around without any sign of melanoma outside that range.  The odds are pretty good in my favor but it does not mean I'm looking forward to the procedure and process.

Ironically, it's not the pain that I'm worried about. I'm one of the lucky few who has an amazing pain tolerance.  If you add into that what my grandfather (crudely) called "big brass ones," I know I'll tough it out without any pain meds and no complaining.  The most frustrating physical limitation for me is having to give up my running.  That's my daily therapy.  I'm hoping the fact this site is on my upper leg won't change the forced rest time any more than my back sites did.  We shall see in the next week.  I've run with so many stitches in me, that I know I can do it but I can't rush my bodies ability to make my skin stretch. It has its own schedule and I have to be patient. Not my strong suit some days.

So, the mental part.....  I figure someone will find my blog and wonder how to prepare.  The short answer is, "I don't know yet."  Three years into this battle, I haven't figured it out yet. I keep expecting it to get easier or that I'll find the answers somewhere but I haven't.  My mind races with worries of: what if there aren't clear margins, what if the muscle is involved, what if this isn't the only spot the monster is hiding in, and so on and on and on.  Quieting my mind is the part of the preparation I wish I could nail.  I made sure my work was caught up enough to leave work early tomorrow. Someone else is making dinner for me (and pouring me wine) to take it easy on a fresh wound. The hubster will put the boys to bed.  My beautiful boys know to "treat mom gentle" like before and to not crowd the bed during the night.  It's my stinking brain that I can't prepare for tomorrow.

My attempt to prepare is to keep reminding myself of the logical side of this fight. Survival statistics, pro-active care, aggressive monitoring, etc.  It helps turn down the volume in my brain if I'm lucky but that isn't often.  At least not as often as I need to feel prepared to walk in tomorrow. But I'll walk in that door, head held high, big brass ones in place (love ya Grandpa, miss ya) and donate a chunk of my leg to keep my survivor status.  Because I'm always prepared for the fight and refuse to give up.

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!

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.

When people know you are a survivor....

There are good things and bad things about being a melanoma survivor.  This goes for people knowing as well.  Today, I'm sticking with the good because of what happened at the soccer field yesterday.

I, obviously, try to avoid the sun as much as I can.  Yes, I wear sunscreen all the time.  I carry a shade chair with me to every game.  But, sometimes, I am going to be out in the sun for a while.  I'm not willing to avoid it or let it control my life.  At a soccer game, I had a mom offer to move her shade umbrella so that I could stand under it.  She knows I'm a survivor.  I was touched that she offered but even more touched about what happened afterwards.  She gave me no grief about declining and didn't make any "attempt to be funny" comments about being in the sun.  It was a simple offer and a wonderful response to me.

It may sound simple but she is the good side of being a survivor.  She offered me shade which she knows I always seek out but never questioned my refusal to take it.  I can't count the number of times I've had people say, "YOU should be out of the sun" or "You REALLY don't want shade?"  And so on and on and on questioning my status and or my decision making.  Trust me people, I can tell you the UVA/UVB rating on my windows and for the daily weather. I know how to take care of myself.

The positive side of being a survivor is having people around you who look out for you without being over-bearing about it or questioning your ability to stay a survivor.  And yes, sometimes (ok, often) I do accept their offer of shade and say thank you without lecturing.

Ticking clock

One thing I hear consistently from melanoma warriors is worry about time.  We are worried about when the monster will come back.  How long will treatment take? How much time do I have to do x?  Time is a funny and scary prospect for anyone who's been told they have melanoma.

I'm one of the lucky ones. My original time schedule was several weeks for removal procedures and a couple of months of recovery.  I did not have to tick off time for radiation or chemo.  I did not have to tick off time waiting to see how invaded my body was.  I was a lucky one.  I pray for those who haven't been.

This doesn't mean that I've made peace with time though.  Every three months, I have to go back for a few more biopsies.  It used to be 6 months, but my time scale changed with the sighting of the monster hiding.  I haven't made peace with time because the statistics say I'll have another re-occurrence within the next 2 years.  I can't decide if this means I want time to speed up to prove those odds don't apply to me or for time to slow down so I have more of it to find and remove the monster lurking.  There's no peace with time for me yet.

I'm staring down the clock for my next round of biopsies.  I haven't been this nervous since the round after my original diagnosis.  This set will be my first after finding the early stages of the monster this summer.  It's nerve racking. I want my appointment to be here now and then I don't want to go at all.

 Time is either my best friend or my worst enemy.  After 3 years, I still haven't decided which one.

Skin Rolling = Effective Ouch

One thing that doctors and other cancer survivors usually don't talk about is the after-effects of surgery and the scars.  I understand.  When you are talking about a disease that is trying to kill you, coming out alive afterwards is usually the topic of conversation.  For those of us lucky enough to walk away healthy with a few extra scars, we won't complain.  But.... there are side effects when you get major chunks of your skin (or any part of your body) cut out/away.

It's been 3 years since my initial site surgery.  The area was still painful years afterwards.  My old dermatologist said she could use cortisone injections to help minimize the pain.  Honestly, I wasn't interested in having a large needle stuck into an already painful scar.  So, I passed.  Luckily, I have the most amazing masseur.  Last fall, I just happened to mention to her about the discomfort and she asked if I'd ever had skin rolling done.  I'd never really heard much about it and after talking to her, I decided to give it a try. This was not a blind decision.  This amazing woman has kept me out of doctors offices over the years for various running injuries.  I'm a person who believes the best medical care is a combination of East and West together.  I trust her opinion and experience... and I've never regretted that.  So, I decided to give it a try.

I won't lie..... this is not a comfortable process.  In fact, it's quite painful.  Pain breathing at its best.  My non-trained, non-expert understanding is that skin rolling is helping break down scar tissue, un-attach it where it shouldn't be attached, and allowing your skin to move freely as it is designed to do.  I started this process having days where just my bra strap was painful on the scar.  And days where it was twisted for even a minute.... Ouch!  I figured it couldn't be worse than super-sized needles injecting chemicals into the area. So, I tried it.

The difference is amazing.  Yes, the area feels like I went a few rounds with Tyson or Foreman or Ali or all of them for a few days afterwards.  It's been worth it.  I did 4 "sessions" with her last fall and the difference was remarkable.  She didn't spend more than a few minutes working the area but it was enough time to make an incredible difference.  After those sessions, I rarely noticed the area any more.  It wasn't until the hubby asked about it that I realized how much my pain was reduced.  Well worth a few minutes of intense discomfort to gain days pain free.

I did still have a few twinges and soreness this summer and I wonder if it isn't related to the new site from July.  It might have been due to increased weight lifting.  Who knows?  So, I asked her to do another session of rolling on Friday.  Ouch again.  I forget about the area until I lean back but I can already tell it's better. I ran 11 miles this morning and the jog bra never once hurt even though it's still bruised feeling.  The legs???? not so much. :)

So, this long blog post is for survivors who might be in the same shoes I was.  My scar had clearly healed but I was still in pain from it.  I know skin rolling won't be for everyone but it might be worth considering if you have the same issues I did.  Yes, my site was in an area of major movement (back/shoulder blade) and that may be a factor.  I've already told my gal that I'd like for her to work on my new lower back scar when it is healed enough.  That's probably another 3 months away and no, I'm not looking forward to it but the relief that comes after.  I talked to my new dermatologist about it and she also said she could do the shots but said if the rolling was providing relief to keep doing that.  Another reason I like her.

Give it some thought if you're in those shoes..... and find someone who knows what they are doing.

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.

Another procedure done

Being a cancer survivor/patient really, really sucks some days. And I say that from a totally selfish place of never having had to go through radiation or chemo.  But it still sucks.  Period.

This afternoon was my appointment for the second procedure to remove an area that had been biopsied 3 weeks ago.  Here's the information: The original site was biopsied about a year ago. That biopsy showed a moderately dyplastic mole.  In the time since then, the mole "re-appeared" or re-grew back. So, another biopsy.  This biopsy showed the new growth was still moderately dysplastic but without clear margins.  Hence the new 1 inch long scar I'm now sporting.

The  numbing agent has not yet worn off but I can feel the tight skin of an area that will take some time to adjust.  It's on my lower back, right under my waistband, and I have no doubt I'll be constantly reminded how much I bend this area in the week to come.  Not fun but the life I lead now. AKA: Cancer sucks.

The part of the visit that really sucks was discussing the other results.  All three sites were moderately dysplastic. Not mild, not low, not high just 3/4 up the scale of nastiness.  And I don't like it.  My odds of 50% benign results seems to be fading.... and my results of "low" dyplastic moles seems to be fading.  And I don't like it. The optimist in me says we are clearly targeting the sites that need to be removed.  The pessimist in me says, "What about the ones being missed?"  There's no good answer here except cancer sucks!

Since this is a selfish post, I'm just going to go with it.  I hate, absolutely hate, that I cannot simply remove the offending cancerous organ and move on.  I'll admit (in my weak moments) that I'm jealous of my mom who had cancer and it is clearly gone now after she had her kidney removed.  Do I want to trade places with her? No, absolutely not because that was her only working kidney and now she's on dialysis for 4+ years until she can get a transplant.  (A post for another day).  I wish I were like the boys' lizard who sheds her skin for a new one.  Or why isn't there a procedure that would make my offending moles glow under a specific light?  Yes, I hate this. Cancer sucks and I don't have to like it.

I don't complain often but today I need to.  There's no fun in this battle.  On a good day, I know I'm winning and I'm fighting the good fight but sometimes, down in the trenches, it just flat out sucks!  And I don't have to like it.  I just have to survive it..... and I AM!

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!