Monday, August 19, 2013

met with the plastic surgeon today.

Today we met with Dr. Jason Miller, a plastic surgeon in Omaha who also works at UNMC.  In the photo, he is with Charlotte because he is the doctor who performed the posterior vault reconstruction on her skull back in March.  He is a respected surgeon at Children's Hospital, the Med Center and the Aesthetic Surgery Center, so he was a logical choice for our consultation today.

We learned today that:
-the incision is still a little red and a little bumpy
-the size of the sutures used were a bit big for the face
-the bumps are scare tissue
-Mike should massage the bumpy scar tissue because it can disperse the collagen
-it may flatten out after a year and "it might be OK"
-an 'acceptable' scar is thin, flat and does not draw attention

The nurses and Dr. Miller were a bit surprised that Dr. Heibel chose the closure that he did (the large jagged "T") for an elliptical defect. Doctors are always very gracious and guarded with their comments about another doctor's work, but he did say "there are some things that could have been done differently" and "I personally wouldn't have put that big of suture on the face".  He also commented that "the hematoma (bleeding) was unfortunate".   These were my sentiments exactly, and somehow it was comforting to hear them.

Of course we couldn't help asking how he might have closed the 'eliptical defect' or quarter-sized hole in Mike's head after the cancer was extracted.  He drew a little diagram showing a 'cat eye' as one option and a rhomboid flap as another option... very interesting.  I think Mike felt a little better hearing that "the hallmark of a hematoma is exquisite pain".  Mike had happened to mention how painful it was when they had to unstitch and re-suture the area because of a bleeder.

Maybe the best part of the day is that we secured the names of three excellent MOHS certified dermatologists in Omaha - that don't hesitate to send cases to a skilled plastic surgeon for closure when needed. One of these men will be Mike's new dermatologist, and we are thankful for that.

Dr. David Watts
Dr. Anthony Griess
Dr. Scott Debates

Tuesday, August 13, 2013

skin cancer blues.

Sometimes I blog for the sheer pleasure of it.  Sometimes I blog for my sanity.  Sometimes I blog hoping that somebody out there will learn something helpful from something we have been through.

It continues to be a bit of a mystery to me why this skin cancer trail ride has been so distressing for me. But in the process I have learned a few things.

1. It is important for me to use a doctor that has good communication skills.
If I had done my research a little more carefully I would have discovered that Dr. Mark Heibel does not score high on communicating procedures and expectations with patients.  If I would have known that there was even a remote chance of an incision longer than a quarter of an inch, I would have aligned my expectations accordingly and I would have secured plastic surgeon closure options. 

This skin cancer scare with Mike prompted me to make a visit to my own dermatologist, Dr. Peter Hino in Dallas.  And guess what?  I learned more about Mike's procedure from Dr. Hino than I heard from Dr. Heibel's mouth.  I learned that 90% of the time, basal cell carcinomas don't need a MOHS extraction.  I learned that the kind that Mike had was called Sclerosing Basal Cell, which is the kind that has tendrils, and thus needs a deeper incision for a clean margin.  I learned that most dermatologists do their own closures, but most have plastic surgeons that they work with.

I realized that I prefer a doctor who is not so arrogant that they cannot discuss pro's and con's of using a plastic surgeon for closure.  It is never wrong to do your own research, to ask thoughtful questions, and to expect a respectful dialog.

2. Stick to your guns and pursue a plastic surgeon if you require stitches on your face or hands.
If there is anything I have learned over the past ten years it is that you must be your own advocate - or your patent's advocate - in the medical community.  Always follow gut.  Always take extensive notes.  And never leave a loved one in a hospital alone.

And if you need stitches on your face or hands, insist on a plastic surgeon for the closure.  You might have to wait a bit and you might even have to go to another hospital emergency room, but you won't be sorry. 

On Monday, August 19 Mike and I will be going to see Dr. Jason Miller, a plastic surgeon in Omaha, to get his thoughts on the power "T" on Mike's forehead.  I am looking forward to hearing what he has to say.

This is a good time to remember "If money can fix it, it is not a real problem."

Tuesday, June 25, 2013

skin cancer ride.

 We were not prepared for the ride we took yesterday.  We headed to the dermatologist in Lincoln for the removal of a tiny smaller-than-a-pencil-eraser Basel cell carcinoma from Mike's forehead.  It is the thing that looks like a 'bindy' in the BEFORE photo above.  I have had maybe a dozen of these removed from my face over the past five years by Dr. Peter Hino in Dallas.  No big deal.  Just a little scrape with his tool, and my job is to keep a band-aid on the little hole for 5 days.  Mike's "little Basel cell carcinoma" was in a different category... the kind of category that the bigger part of it is hidden under the skin.  The kind that grows legs or tendrils.  We knew that Dr. Heibel planned to use the MOHS method to remove it.  This means that he removes the suspicious mass, then sends the tissue to the lab in the next room, and you wait to see if the margins are clean --- or "if they got everything".  Well, it turned out that Mike needed a second deeper round to remove all the cancer.  In all, there was a hole about the size of a quarter.  (I will spare you that photo.)

What we were not prepared for, were the incisions and stitches made to close the hole where the cancer was extracted.  The day might not have been as stressful had we seen this coming.  I was thinking 'pea sized mass removal, maybe a stitch or two'.   I was thinking, we can live with a half inch scar...

When I walked into the room and saw the massive incision and who-knows-how-many-stitches, you could have knocked me over with a stick.  It seemed to me like it must be some kind of joke or prank.  What were they thinking? Certainly they were kidding.  While I am currently in the midst of researching incision methodology and plastic surgery procedures, I may come to find out that this is genius.  I just have not arrived there yet.

It got worse.  After we left the doctor's office, we were even able to joke about the huge bandage taped to Mike's forehead.  We ate lunch and laughed with the waitress "What, do I have something on my face?"  It wasn't until we were heading for home and I started noticing some serious swelling.  They had not mentioned swelling.  And now Mike was in pain.  A lot of pain.  I called the clinic back.  They wanted us to return to have it checked out.  They suspected internal bleeding and when we arrived they said "Let's open up the stitches, find the bleeder and stitch you back up."  At this point I said, as nicely as I could "Do you have a hospital you work with so we could do it there?"  To which the doctor just turned and said "Why?" 

I wanted to say "Because this is Mike's face, and I would like a plastic surgeon doing the work.  Because Mike is in a tremendous amount of pain. Because something has already gone wrong today, and what if there were further complications. Because I don't have a good feeling in my cc (cancer coordinator) gut.  Because you haven't had a chance to earn my trust yet."  But I didn't say anything because Mike was glaring at me and had asked me not to "tick off the doctor".  I left the room and had a very dark, scary hour and fifteen minutes.  I tried to remember why we selected this guy as Mike's dermatologist.  I think it was because we felt he would be thorough... and a lot of people go to him. I knelt down in a hidden corner of the waiting room and prayed.  And cried.  I called my girlfriend and cried some more. 

At 5:15pm Mike walked back out with a smile on his face, looking like he had been in a car wreck... or bad fight.  We headed home.  But first, we stopped for the much needed narcotics at HyVee.  Up to this point, he had only taken 4 Tylenol, which were not doing the trick.

Mike is one tough guy.  Through Mike's two cancer surgeries in St. Louis for his tonsorial cancer, he never took a single pain pill.  He was asking for it yesterday.  In all of our cancer journey since January 2011, I had never seen Mike in so much pain.  It was hard for me, because pain doesn't usually register on Mike's scale... and I was not used to seeing it.

So there were several factors that made June 24th a scary day.  We were not prepped for the radical nature of the procedure or the possibility of it.  There was serious pain involved.  There were complications.  And all the while I wanted a plastic surgeon on the scene.  All that said, we are thankful that the cancer is out.  I might also descover that Dr. Heibel is in fact as skilled, or more skilled than a plastic surgeon.  We will see how things heal and wait to make that call.   If not and if need be, we can always opt to have his forehead fixed in the future.

This is Mike today. AM on top and PM on the bottom.  He still looks like he has been in a bad fight.  I guess he has.  Maybe we need to ask sister Melinda to write another poem about "Cancer Clyde" and the punches he throws.

Thursday, March 28, 2013

two year check.

Did I really just type "two year" check?  Has it really been two years since we started this cancer journey?  Two years since I started this blog?

Last Wednesday, March 20, 2013 to be exact, we ventured back to St. Louis for Mike's two year checkup.  Please rejoice with us that the words that came from Dr. Bruce Haughey after a thorough check of Mike's throat and neck were "Great. 100%"  You cannot imagine the relief that swept over us. 

If you would have asked either of us if we were stressed over this checkup we would have replied with something like "haven't thought much about it".  But underneath everything, there is a strong under current that feels the strain and then releases at the sweet news that no cancer has re-surfaced.

I had forgotten the significance of the "two year" mark.  With Mike's particular kind of cancer, if it has not returned by the two year mark, there is a 90% chance that it will never, never, never return.  (It was comforting to repeat the never part.  Thanks for indulging me.)  Dr. Haughey's sweet nurse Nicole put it this way: After the two year mark, we are not so concerned that it will come back.  So this is when Dr. H says he will share a can of Coke to celebrate. 

We did better than Coke.  See the Blanc de Blancs (below) that awaited us at the Vespas when we got back to their house!  We had a celebratory dinner complete with wonderful wine, a gourmet dinner, toasts by the fireplace and Irish music in the background. 

Mike continues to build his muscle strength after the massive burn out of neck and shoulder tissues from the radiation.  Dr. H talked about the fibrosis or scarring of the tissue on his neck, how there will be a continuing fibrotic change in the tissues, and how the DNA effects are never litigated.  What I know is that Mike has started a regular workout routine at Anytime Fitness - and Mike's Gym aka pull-up bar in the basement. 

We talked about how we will never "get off the bike"... but the journey just changed... for the good.