It's not over til it's over...

Ok, it's been about 48 hours since the surgery, and I know - you want play-by-play commentary.

I arrived at the surgical facility at 8:00 AM.  The nurse took me and my husband back, had me sign off  on the procedure and the wound care instructions.  A new doctor, Dr. I came in to introduce himself - he would be assisting Dr. S.   And then, I put on my gown, and Dr. S came in to meet my husband and talk about our game plan.

The CT scan looked good - it hadn't gotten down to the bone.  His one caveat is that, having never worked with this exact type of tumor before, he couldn't say for sure he would be able to get all of it, if it wasn't all clustered - he said it in a better medical way, but that's the gist.  We talked about the suture, possible wound issues, etc.  I asked if he thought we were dealing with Pilomatrical Carcinoma and he said he was sure of it.

They got me on the table and stuck this ground wire on me - since they'd need to cauterize me for bleeding.

And with that, Nurse M started draping the area and cutting back my hair.  She then kicked my husband out, and started giving me the lidocaine shots to numb the area.

With that, Drs. I and S came in and started cutting.  We talked while they worked - about travel, food, work - Dr. S was teaching Dr. I while they worked, and I could tell he was a very good, patient teacher.  Nurse M had told me that is what she liked about Dr. S.  I had to agree.  I remember telling them that I could tell this was a happy workplace.

After some time, they took they first section of tumor to the lab for a good look.  They told me it would take about an hour.  They packed the wound, sat me up and let Matt come in.  We waited for a bit, then I asked to use the bathroom - so she unhooked my ground wire and I headed to the ladies' room.  I started to seep through my bandages, so I made it quick, and when I got back, she settled me back in and rewrapped me much tighter.

After about an hour, she came back and told me they'd need to go back in and take more - but thankfully, they wouldn't have to go wider - just deeper.

Think about that for a second.   The wound, at that point, measured 5 centimeters by 7 centimeters  Not insignificant.  Think too about how 'deep' it is from scalp to skull... not very!

By then, the lidocaine was starting to wear off, I was starting to hurt, and I was definitely feeling panicky.    I asked Nurse M if I would be able to get a little more lidocaine before they started again, and she assured me she would re-inject the entire area before they got started.

They kicked my husband out again, and got back to work.  This time, they were cutting for a much shorter time, and in what felt like minutes, they rewrapped me and took another chunk of scalp to pathology.

My husband came back in, and this time, I didn't have much energy to talk or focus.  Another hour passed, and they came back with good news.  All clear - time to close it up.

Because of the size and type of the wound, there would be some strategy.  They would have
 to use a purse-string type suture.  Go ahead, look up what that looks like.  I'll be waiting.

Yeah, it's freaky.  Nice, huh?

Anyway, that's what they did.  And that brought the aperture down to about 2 cm sq opening.  Which they covered with a cotton ball, saturated in vaseline -they covered that with  a piece of gauze, then sewed all that together.  They called it a bolster, and yeah, look that up while you're at it.

Basically, I'm walking around with the make-up removal aisle of the drugstore strapped to my scalp.

So, anyway - they closed it up, and bandaged me again with Telfa and Coban (non-stick gauze pads and that stretchy bandagey stuff that sticks to itself, but not you).  They had to go under my chin and around the head a bunch to get it to stay, and it gave me a faux mohawk kind of look.  Nurse M cleaned up some of the blood I'd gotten pretty much all over my head and neck - and sent me home with peroxide, more Coban and more Telfa.   Oh, and... a scrip for Loritab.

I made an appointment to get my sutures out on Wednesday, and with that, my husband and I headed to the car.  We caucused, decided to get the scrip filled and have lunch out on the town.  I found, thankfully, a baseball cap in the trunk, and we ended up at a pub in our neighborhood.  Well, with my jaw racheted down, I couldn't do much to eat - so I ended up with cheese fries.  They were awesome.  I also managed to choke down a cookie - what a trooper!

We got my narcotics, and  headed home.  By then, it was about 3PM.   I ended up taking a pill, then zonking out for a nap.


I got up at five, killed some time with my Kindle, we ordered a pizza, watched True Grit (the new one) and went to bed. 

I woke up early yesterday, felt good - but still glad to have the day off.  I went to a fabric store and bought a few pieces of fabric to be used in disguising my scary scalp.  I watched far too many hours of shitty TV and attempted to eat sensibly.  I did pretty well.  I also cleaned my husband's bathroom and put up a new shower curtain liner.  I even made dinner.

Last night, I met my friend Rosie for Project Runway, and felt fine. 

In fact, I wasn't at all tired for bed last night, but I sacked out pretty quickly once my head hit the pillow.

Today, I came back to work with a scarf tied firmly over my wound.  And nobody has said a word, leading me to believe that someone must have spread the word to be nice to my cancer surviving ass.

Or, people really just don't notice anything.

Either way, the next big milestone is tomorrow - I can wash my hair.  Selectively.  And I don't have to bandage up, which means I can try to go scarfless!   Tuesday, when the gauze comes off and cotton gets removed, then I get to wash with reckless abandon.  Sort of.

I cannot wait, because dang, it's itchy.

But, I don't have a tumor on my scalp anymore, and that's a good thing.

Lest you think I'm done posting, I'm not.

Because if you're reading this, it's probably because you want to know what happens next.

As soon as I find out, I'll let you know.

What to Wear When You're Expecting (to have your head cut open).

So, it's 6:35 AM Central Time.  I've been awake for about an hour.  I finally got up about a half hour ago.

What's the story?

Well, I'm hungry.  I think I'll have peanut butter toast as breakfast.  Maybe some milk.

I did a Google search for what to wear today last night, and was told a button up shirt.  I didn't even think of that, but of course, it makes sense.  So I dug out one that a) fits, and b) isn't something I need for work.

I recently got rid of my fattest fat girl clothes in a mass purge to Goodwill, so I don't have a lot of wiggle room on my above criteria.

I'm wearing a lightweight button up, shorts and my Chuck Taylors (low cut, navy).

I'll be departing in about an hour.  So I guess it's time to get my breakfast on, wash my hair with wild abandon for the last time for a few... days?  Weeks?

It's the uncertainty that's killing me.

I'll write later today, post procedure and break it down for you.

The tide is high, but I'm holding on...

So, we're getting close.  In 48 hours, I'll be either in surgery or out of it - but there will be less of my scalp than there was.

I've started telling people  - because it's easier, and because - there's nothing wrong with having skin cancer.

I mean, it's not ideal - but it's nothing to be ashamed of.

For the record, I didn't get it by spending too much time in the sun.

Or by doing or not doing anything.

It just happened.

And in 72 hours, I'll be watching Ellen and attempting to fix my hair over a scar.

Woohoo!

Sneaky Snake

I headed back over to the medical facility today for a CT Scan.  It took about an hour, from arrival to departure, so of course, that’s a  1.5 hour lunch.  I came in a half hour early, though, so net/net – not missing any work today.

I wouldn’t say I was missing it, Bob. 

Anyway.  They did a set with dye contrast, and one without – and that dye makes it feel like they poured hot Sprite in my veins.  Plus, I got a weird taste in my mouth, yay.  But, all’s well that ends well… for now.

I don’t expect any surprises from the scan results, but then, I didn’t expect any from pathology, and we see where that got me.

So, now we wait.  Next Wednesday.  Here’s hoping that we’re reaching the end of this story.

Email to the boss in re: procedure date

I've filled in the names with aliases to protect the innocent, but here it is.

Bossman,

The nurse called this morning and set me up for my procedure on Wednesday 7/27.  Since I have the PTO and we don’t have anything on the books, I’m going to take the next day,  just for grins.  And because, I’ll be honest – I love daytime television.  That Judge Judy is a breath of fresh air.

There is training on 7/27 that I’m going to have to either resched or offload to Colleague – I copied you on that e mail to him. 

Obviously, I’ll have to do some kind of follow-up after it’s all said and done, but hopefully, they’ll be a little less rigid.  When they called this morning, it was basically, “Here’s when you need to be here.  Period.”

So, there’s that.  Also, for what it’s worth, I finally told my parents – my father’s reaction was basically, “Ok, well it sounds like you have it under control.”   Mom’s concern was how it would affect my hair.  I also had to convince her I had a good doctor and that we were doing the procedure in a reputable facility.  No, Mom, I went to the Carcinoma Pagoda at the mall, and they gave me a coupon for a free eyebrow wax with purchase.

So, hopefully, that’s that.

Thanks!

Patient

Without my sense of humor, where would I be?

Full Disclosure

I finally let my parents in on the diagnosis, and Dad, predictably, didn't seem concerned, Mom had more questions.

Net/net, they're comfortable with my game plan.

They're also not coming up for the procedure.  I think this is smart.

Now that I've talked with them, and my boss, the last real hurdle is letting my teammate know I'll be out a little.

I don't really want to give him details, because I don't want to wear a label. And because it's none of his damn business.

So, again, that's that.

It is what it is.

Dr. S thinks it's cancer.  Low on the malignancy spectrum, but malignant.

I like that because I think it means we'll treat it aggressively.

To wit, I have a CT Scan of head and neck set for Monday, 10:20 AM.

Surgery; Mohs Style to follow.

I met two other doctors who just wanted to sneak a peek... they were very nice.

I felt a little like the bearded lady, but it is what it is.

More soon.

As we stumble along...

I've been traveling for work, which is an excellent way to forget that you are experiencing a Schroedinger Cat moment in your health history.  I have a tumor that is simultaneously both malignant and benign.

I did tell one of my trusted colleagues today who told me he'd be freaking out.

Since my flight didn't land til 11PM last night, I'm too tired to be anything other than hungry.  Even though I just ate lunch.

I got a little too used to eating on my trip.  I'm ravenous.

More news today.  Later.

Now we're cooking!

I got a call around 3:15 from Dr. S's nurse.  Would Wednesday, 1:30 work for me?  As a matter of fact, it would.  In fact, that's perfect.  I leave for Philadelphia Monday morning, back late Tuesday night, and then into the office Wednesday.  So I'll take Wednesday as a half day, get my pilomatrix on and still get down to my Weight Watchers meeting.  Well, in theory.  After 24 hours in Philly (home of TastyKakes and cheese steaks), I may need to take a week off.

I sent the PTO request to my boss, and we talked briefly.  He agreed with me on not telling my parents til I know a little more - and by Wednesday, I should have at least a little more data.

And what's not to love about that?

Well, we shall see.

Good times.

And good news - Dr. S takes my insurance.  BOOM!

What do you know?

Good news?  The path report is back from California.  Bad news?  Inconclusive.  They hedge to call it a Pilomatrical Carcinoma.  They think there’s a possibility it’s benign – a proliferating pilomatricoma (see also proliferating pilomatrixoma).    Well, Googling that is a little less scary, but my local doctor reminded that the local pathology thinks cancer.  And that the secondary people didn’t have much tissue to work with because her samples were so friable. 

I kind of pressed her to say if they were leaning toward benign or malignant, but was sorry they couldn’t decide.

Either way, it has to come out.  That’s what the good doctor says.  I think she thinks it’s cancer.  But, regardless of whether it’s benign or malignant, they’re cutting on my scalp.  The difference is how much.  And in what way?

So now, again, I wait.  Dr. S – the Mohs Surgeon and Vanderbilt wants to see me next week, and they’re going to call me today to set it up – but Dr. P thinks if I haven’t heard by 4PM, I should call them.

Which means I have two hours to kill before I can make a move.

Dr. S will probably biopsy the area, and hit up pathology again.  That’s the hard part.   Waiting for pathology – which, I’m starting to learn is like corporate America – slow to move, and hesitant to commit, lest they be wrong.  I mean, I don’t want them to say it’s OK if it’s not.  But I’d be less upset if they said it’s bad and then turned out to be wrong.

Whatever.  Now, I wait.

I have a departmental meeting at 3, so it would be nice if Dr. S’s office would call before then.  Or whatever…

Clearly, you can poke a fork in me.  I’m done.

For now.

More as I know it.

Lemon Tree, Very Pretty

Why am I doing this?

So,  I’m putting this story into words because to be honest, I can.  I’ve always used writing as therapy.  That’s why the first few entries are devoted to a tonsillectomy from back in 2009.  Full recovery, by the way.  The taste disturbances took a year to go away, but no sore throats, no more tonsil stones.

Anyway, I wanted to give you a little background.

And presumably, if you’re reading this, you have stumbled upon this by searching pilomatrical carcinoma on Google or something.

And maybe you’d like some documentation from one of the 90 some-odd people diagnosed with this crazy thing.

We’ll start with a little about me.

I’m a 36 year old white female.  I live in the Southeastern United States, and like many people of my age and geography, I got a lot of sun as a kid.  I don’t think that has anything to do with it, but I’m going to give you tons of data – you can decide what it means.

I have moderately fair skin, brown hair (graying), brown eyes.  On my mother’s side, her people are from England, Scotland, Ireland – so there’s that Celtic descent, but it’s not obvious.  On Dad’s side, we have French, English and Hungarian Jews. 

I’m in reasonably good health.  I just stopped taking birth control, but I was on it for nearly 15 years.  No kids, and we plan to keep it that way.  So yes, I’m married, and have been for 6 years.

Other medications include a low dose of Effexor (for anxiety/depression) and a low dose  ofLisinopril (high blood pressure).  I’m trying to get off the latter – which looks promising.  I’ve lost 44 pounds since January.  I have another 44 to go, and I should be good.   I’m using Weight Watchers.  It works.

Clearly, my weight was an issue, and will be so for a while longer – though my doctors have always remarked that my health is overall quite good.

Now, that brings me to family history.

We’ll start with Cancer itself.  On Mom’s side, nothing.  Dad’s side?  Both parents died of Cancer.  Paternal Grandfather – Hypernephroma.  Paternal Grandmother – Lingual/Oral Cancer.  Both died within a year of diagnosis.  He was 62, she was 83. 

Dad has a history of diabetes, high blood pressure, kidney disease, heart disease, obesity… honestly he uses up a lot of ink on the family history portion of medical forms.

Mom has high blood pressure and high triglycerides.  Her father died of…some stomach thing.  I don’t know exactly.  Her mother died of, ultimately old age – but her health deteriorated after she fell and broke her hip.  My grandfather died in his seventies, grandmother in her late eighties.

Clearly, I need better data on Mom’s side. 

I’ve been pretty low-impact in terms of health issues.  The aforementioned tonsillectomy, wisdom teeth – but no other surgery or health concerns.  Well, obviously, the weight wasn’t good, but that’s progressing nicely.  The depression/anxiety are mostly under control (although to be honest, I’m both anxious and depressed at the moment).  Since I’m not planning to have kids,  I’ve never had any reproductive or assorted lady part issues.

Not that any of this necessarily means anything. 

Like I said, I’m giving you the clues and counting on you to Nancy Drew it into a case.

Meanwhile, no word from my dermato.  Or anyone.

I still haven’t told Mom and Dad.

Only my husband and boss.  And you, if you’re reading this.

How did this happen?

For awhile, I've had a lump on my scalp.  I finally went to the dermatologist back in May, after a failed course of antibiotics from the Urgent Care Center, and a failed attempt to drain it at my Primary Care office.

She looked at it, agreed that I had a cyst and set me up with an appointment in late June to cut it out.

A few weeks ago, dermatologist excised as much as she could get, decided it might be a lipoma and sent to pathology to determine whether it was a lipoma or a cyst.

I went yesterday to get the stitches out, and she came in to talk with me.

And bad news, it's neither.

What the preliminary pathology indicates is a rare cancerous growth called a pilomatrical carcinoma.  Or a pilomatrix carcinoma,  or a malignant pilomatricoma, or malignant pilomatrixoma... point being, I have cancer.

Well, I have a cancerous growth.  I have a colleague who is always talking about being a Katrina Survivor, which I think overstates the fact that he was in the general area of Katrina, got out of that area and is here to tell about it.

I don't want to overstate things and say I have cancer.  Except, it appears I do.

We're waiting for the final pathology report from San Francisco.  Apparently pilomatrical carcinoma is rare.  Really, really rare. Like, "Good-luck-Googling-that" rare.   My dermato has never seen it, nor have any of the other dermatos in her practice.

She started talking oncology, she started talking Mohs surgery, she started talking Vanderbilt, and referrals.  I started wondering, "Wait, is this why it's been so easy to lose 40 plus pounds?"

What I have been able to determine is that it can metastasize elsewhere in the body - lungs, lymph nodes and so on.  It's not common, but it happens.  The tumors themselves happen twice as often to men.  It's really, really uncommon.  They'll excise the affected area.  Mohs surgery seems to be effective.  It could recur.  Radiation and Chemo haven't been used widely to treat it.  Depending on what you read, the growth is either slow or aggressive.  Or both.  Or neither.  The scalp, head and neck are the most common areas of appearance, but there's a case online of someone having a growth on her clitoris (!!!!).

Since Matt lost his mother to cancer (lung), I hated to even tell him, but obviously, I did.

I told my boss, because I may have to take some time off, and become Massive Head Wound Harry (Google that, and you get plenty of results back).

I haven't told my parents, my sister, or any of my friends.  I don't feel like talking about it until I know what happens next.

But I did feel like writing about it, and so here I am.  I have to admit, I'm scared.  Not scared of dying, because I don't think I am dying.  I think I'm in better shape than ever.  But scared of pain, of inconvenience, of having a huge head wound, losing hair... and then, when I've exhausted that... a little bit scared of dying.

For now, though, we wait.  Eventually Dr. Parker will call with a referral to a doctor, and we'll see.

So, Pathologists in San Francisco, I hope you're on your A-Game.  Take a good look, give us your report, and let's rock on with our bad selves.

The path to wellness starts... here.