Meeting Mortality - Chapter 2

The Mohs procedure is a micrographic surgical procedure for removing cancerous tissue.  Basically, the Mohs surgeon removes tissue and looks at it under a microscope on the spot to see if there are cancer cells.  He keeps removing tissue until he verifies that he has removed all cancerous tissue.  He does this all round the site of the initial tumor site.  Dermatofibrosarcoma protuberans (DFSP) tumors put out little 'fingers' of cancer cells radially around the original nodule.  If you miss removing one of these 'fingers', the cancer grows back.  DFSP always starts in the skin but, as a sarcoma, it can infiltrate any soft tissue.  This thing was growing my neck, not terribly far from my thyroid, voice box, and the plethora of other things. 

Dr. D scheduled my Mohs procedure for January 25th, giving me 11 days to study and dwell on the cancer growing in my neck.  In that time, I went to see the leading sarcoma expert at University Hospital in Iowa City, Dr. M. 

Dr. M specializes in rare sarcomas, like DFSP.  After reviewing my CAT scan and pathology report, he signed me up into one of his research studies and talked with me about my prognosis.  I must say that he is pretty awesome and I was, and still am, pretty happy that he is on my 'team'.  The long and short of that conversation was that Mohs surgery was the way to go and that my recovery and survival odds were very, very good, in the neighborhood of 99%.  This jived with what I had discovered in my own research and I began breathing easier.  Dr. M did say that if the DFSP reoccurs that I needed to come see him immediately because, having had one surgery on the area already, treatment would be more difficult a second time around.

Dr. D set me up with Dr. W for the Mohs procedure.  Dr. W is a dermatologist and a certified/accredited Mohs surgeon.  The Mohs is used a lot for treatment of basil cell skin cancers so it is dermatologists who generally do this kind of thing.  I could tell that Dr. D was a little concerned as to how deep this thing might have infiltrated and whether or not a dermatologist would be the right doc to go deep into the neck if necessary.  He scheduled me to come back to see him the same day of and immediately following the Mohs procedure so that he could take care of any reconstruction of my neck, neck muscles and, if need be, underlying tissues.  He wanted to make sure that not only was it done right but that it could be done so that it left a minimal of scarring.  The tough part in planning was that it was an unknown how much of neck tissues would have to be removed and how deep it would go. Timing was also an unknown.  The Mohs might take an hour or it might 4 hours, it just depends on how many iterations of tissue removal are necessary.

Hubby took the day off to play chauffeur and my MIL took the kids for the day.  We arrived at Dr. W's office right as they opened and he got started on the Mohs procedure pretty immediately.  This was done in his office under a local anaesthesia.  I must tell you that I was pretty nervous about this going in.  It is also a very weird experience to be talking to someone who is cutting a hole in you neck. 

"So, doc, how many of these Mohs procedures have you done?"

Dr. W, paused and thought a moment.  "Well, in the last 2 years, I've done about 2,000 of these.  It's the primary treatment for skin cancers on the face and nose."

"How many cases of DFSP have you worked on?"

He answered with hesitation, "Nine, but this is the first time I've seen it on the neck.  The other's were all on the torso except one, which was on an arm.  They were all much bigger too.  This one is pretty small, which is good."  He paused, then asked, "You be sure and tell me if this local wears off while we are working, OK?"

"No, worries there, doc.  You'll be the first to know."

I closed my eyes and thought about my kids and my husband, trying very hard not to focus on the tugging and pressure at my neck or the comments of the doc to the nurse.  This first stage of the procedure took about 20 minutes. 

"OK," said Dr. W.  "We're going to put some temporary stitches in this to close it up while I process the tissue samples to make sure we've got all of it.  The nurse will put a dressing on it and you can sit with you husband.  This is going to take about and hour."

So I was back in the waiting room, afraid to move my neck much for fear of the temporary stitches pulling or the dressing coming off.  Hubby was pretty entertaining.  I could tell he was concerned but underneath that was a fascination with what my neck looked like under the dressing and how the procedure worked. 

It took longer for Dr. W. to process the first set of samples about 2.5 hours all together, by then the local was wearing off. 

"Well we've got clear margins in all around except underneath on one side.  It's going into the neck muscle deeper there and we need to go back in and remove more tissue."  The second stage was about 15 minutes.  The local kept wearing off and he had to re-dose me about 3 times.  About 5 minutes in, I heard him say, "Oops," and then to the nurse he said, "Could you go get the machine over there?" That's a real attention grabber!

"Something wrong, doc? Cut your finger?" I asked with more bravado than I felt.

He chuckled, "No, I just nicked a capillary and there's a bit of blood.  Nothing to worry about."

'The machine over there' was a cauterizing tool and it is very unsettling to smell yourself scorching.  This time he left the wound open and just put a dressing on it.  I got to stay in the procedure room while he processed this second round of tissue samples and the nurse went and got Hubby to sit with me.  After about 30 minutes, Dr. W came back in and said, "We got it all.  Clear margins all around and deep.  You are seeing Dr. D today?"

Hubby answered, "Yep,  he said he wanted to do the final repairs and closure to repair things and make it pretty." 

Dr. W nodded, "So I'll just put some temporary stitches back in and we'll put another dressing on it to hold things in place for your ride over there."

Hubby tucked me in the car and we headed to Dr. D's office.  He called my mom as we drove and let her know how things were going thus far.  I heard the relief in her voice over the speaker phone in the car and it brought tears to my eyes.  I could tell that the oncology nurse in her had been dwelling on worst-case scenarios.
I leaned the seat back and closed my eyes as Hubby made a second call to update his mom and check on the kids.  We were at Dr. W's a total of 4 hours.  My neck hurt and I was ready to be done.

Meeting Mortality - Chapter 1

A week before Thanksgiving I found a lump in my neck.  I just happened to run my hand over the front of my neck one evening and there it was, a pea sized lump.  Now as the daughter of an oncology nurse, the absolute worst possibilities ran through my head immediately; but I am also a pragmatist.  There were a lot of things that little lump could be - a weird zit, ingrown hair, inflamed lymph node, or any number of other benign things.

Turkey Day came and my little lump was still there. So I went to see the family doctor, Dr. G.  "Wow, how did you even find this?" asked Dr. G.

"I just ran my hand over my throat," I replied.

"Huh, wonder what it is," he muttered with his brows furrowed.

"So do I, doc.  I was hoping you could tell me."

Dr. G scratched his head.  "Well, your thyroid is right there.  Let's get a picture of it and get a better look at things."  He ordered an ultrasound and a nurse scheduled it for the following week.  It didn't show much conclusive, just 'a possible cyst on or near the thyroid'.  Wonderful, I thought, now I have a whole new realm of possible worst cases to dwell on.  

Dr. G wanted better pictures so he ordered a CAT scan.  When the nurse called to schedule that with me I asked her, "At what point can we stop screwing around with pictures and just cut the thing out and send it off for a biopsy?  I can feel it right below the skin.  I figure with an out patient procedure and maybe 4 stitches, we could take the whole thing out to send to a pathologist.  I really want to know whether its malignant." 

The nurse chuckled and said, "I know exactly where you're coming from but no one is going to do a biopsy with out a CAT scan to confirm what's there.  The insurance won't cover it if they do."

Right.....gotta keep the bureaucracy happy.....forgot about that part of medicine.  So I spent a week reading about and dwelling on worst case problems associated with thyroid cysts.

The CAT scan came back as 'a small mass, most likely a cyst, in the epidermal layer'.  I was relieved.  This wasn't sounding so bad now, especially after all the worrying I had been doing.  Dr. G said, "These things sometimes pop up in the skin and there is really nothing to them.  We have two options here.  We could wait and watch it for a change of size or other warning indicators or I can refer to an ENT."  As far as I was concerned the only choice was the latter.

I saw Dr. D, the ENT, just before Christmas.  He looked at the CAT scan and said, "Yep, that does indeed look like an epidermal cyst.  They don't do much really.  We could leave it there and watch it if you wanted.  They do have a tendency to get infected and burst though, so we would want to watch it for changes in size." 

I shook my head, "Doc, I was raised by an RN/OCN.  This thing wasn't there before and now it is.  By definition there has already been a change in size.  Can we just cut it out now?  I'd like it sent to a pathologist for my peace of mind."

Dr. D smiled, "That's what I would do if I were you, take it out before it becomes an issue."

Since there did not seem to be any real reason to hurry about this, I scheduled the procedure after New Year's so my family and I could still go spend a week with my parents for Christmas.  On January 10th, they put me under sedation and Dr. D cut the lump out.  Hubby brought me home and, while I slept the rest of the day, he and the boys went to fill my post-op prescriptions.  I had a total of 5 stitches in my neck; just a scratch really, but fascinating to my children none the less.

Four days later, on Friday morning, I was running errands, driving on a relatively busy street with the kids in the backseat when my cell phone rang. 

"Jenni, it's Dr. D--.  How are you feeling?"

Oh crap, I thought, something is wrong.  If everything was fine, it would be his nurse calling.  "I'm doing OK, doc.  How are you?" I replied as made a quick right turn onto a side street.

"I got your pathology report back.....," Dr. D started and then there was a long pause.

Uh oh, I thought.

"......turns out this thing wasn't a cyst after all...." he continued.  He was still talking but my ears, my eyes, and my brain suddenly all stopped working at once.  I caught another word of what he was saying as I parked the car, "...sarcoma...."  I can't remember what came after that really.  It was something about rare cancer, catching it while it was still very small, and really good odds.  I was still having a hard time getting past that s-word...sarcoma.  That's an ugly scary word. 

Dr. D must have realized he had lost me there for a moment.  "Jenni?"

"Yeah....sorry, doc," I mumbled.

"We need to go back in and do another procedure called a Mohs surgery.  It's the prescribed treatment for this," he said.

"I should probably see an oncologist too," I said.

"We can get one involved but for surgery he would refer you to someone like me or to someone who does a bunch of Mohs procedures, that's typically a dermatologist," Dr. D said.  "I've got a bunch of calls out to find out who in the area has done the most of these.  I know you are scheduled to come in to the office on Tuesday but I want to see you Monday instead.  I'll have everything set up by then."  He was very encouraging, up beat, and on top of things.  Great qualities in a doctor.

"Sure, doc, see you Monday," at least I think that's what I said.  My brain was still screaming, SHIT!

As I hung up the phone, my 5 year old asked, "Mommy, what's on this street?"

"Huh? What, Monkey?" I croaked as I felt my heart climbing into my throat.

"Why are we stopped on this street?  Does someone live here?" he asked.

"I just needed to pull over to answer the phone, kiddo.  Just give me a moment," I said as I rested my head on the steering wheel.  Keep it together,girl, so you can get yourself and the kids home safely.  Good ol' pragmatic me.

We got home. I made lunch. I took my 5 year old to school, and put my 3 year old down for a nap.  Then I started doing a little research.  Research is usually what I do when something scares the hell out of me.  Mohs surgery is pretty straightforward and not terribly scary in and of itself.  I called Dr. D's office back and talked to his nurse.

"What is this thing in my neck called again?" I asked.  "I was not in a place where I could take notes when Dr. D called earlier.  The only part I remember is 'sarcoma'.  Some of those are pretty terrifying so I wanted to make sure I was reading about the right one."

"I would too," she said.  "It's called dermatofibrosarcoma protuberans or DFSP for short."  She spelled it out for me and then paused, "Do you have any questions about it right now?"

"Can I get a copy of the path report?" I asked, knowing that my mom was going to want to see it.

"Yep.  I don't have electronically but I'll make sure to give you a copy when you come in on Monday morning.  Any others?"

"I need to think about this a bit first," I said.

"OK, if you do think of any or need anything else just give us a call.  We'll see you Monday morning."  She was very helpful, up beat, and empathetic. Great qualities in a nurse.


I hung up the phone and listened to the clock on the wall ticking as I stared at my notes on the table.  I have cancer.  This rather sucks.