Friday, April 15, 2016

Connected doctors

The really cool thing (unless you are paranoid) about having cancer is that the doctors seem to work well together and communicate.

Unfortunately, I am a major klutz.  Of epic proportions.  So bad that my mom put me in ballet as a kid not for the dance but to learn some grace.  Didn't work.   I can find any solid object in my path, usually with my feet.  My poor toes have paid the price over 40+ years of walking.

Yesterday, I had 2 procedures done on 2 toes on my left foot. Short version = one leaking joint sealed up and one toe with extra bones removed (bones, not toe).  So, I'm sporting a gorgeous black orthopedic sandal look.  But the point of this story is the doctor connection.

I never told the podiatrist that I am a melanoma warrior.  There are no marks or moles on my feet/toes where he was working so I didn't say anything.  During our conversation yesterday while he was fixing me, he mentioned my dermatologist and how awesome she is.  Keep in mind, they are not in the same office.  He referenced knowing I could handle the numbing shots because I do it often. (Side note, numbing shots deep in your feet stink big time. I'll take my upper skin any day over that.)  I couldn't help but be impressed that he was aware of my history.  I could comfortably confirm for him exactly how long my stitches need to stay in from too many biopsies and he knew I was sharing trusted information.

I don't know who shared what with whom.  Sure, my file may be flagged. I'd be surprised if it wasn't but to me that's the thoroughness that a warrior should have and expect.  It reminds me of how lucky I am to have a team on my side fighting this with me.   I often feel very isolated in this fight and yesterday's visit had the unintentional effect of reminding me that I'm not fighting alone.  Now I'm off to go put my foot up and never take for granted how much my toes effect my daily life.

Tuesday, March 15, 2016

A first..almost 5 years post diagnosis

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.

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

[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...

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...
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.

Monday, December 1, 2014

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.

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!

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.

Sunday, October 12, 2014

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.