I made a huge mistake. My decision and it was wrong. Big time.
I am not looking for sympathy, my husband JC takes care of
that very nicely. I do want you to know I am just fine,
JC is fine and FAOL is alive and well. Some of the things
we had planned for this website didn't happen because I just
couldn't get them done - but for the most part we were able
to continue and not skip a beat.
Here is the story, in hopes you can avoid making the same mistake(s).
In March of '04 I wrote a column called,
Got Cancer? Yet? I told about having a basel cell carcinoma
removed from alongside my nose. After a bit of a botch with a
'specialist' I opted to have my family physican (who is a surgeon)
remove it in his office, January 15, 2004. No big deal. He did
and when the pathology report came back he really didn't want
to tell me he had not gotten it all.
Okay, I can handle that. He made an appointment for me
with a local plastic surgeon, who after seeing me and
the pathology report, decided we would do the necessary
surgery as an out-patient at the hospital where he could
have a frozen section done to make sure the tumor was
entirely gone. I have a problem with anesthetics, so some
special arrangements had to be made. That was handled and
the surgery scheduled, for early March of '04.
Released with a sore face, but knowing 'they got it all' I
was very relieved. Even though this is not normally a
serious type of cancer, it still was cancer and enough
to make both my husband JC and I concerned.
Back to the surgeon in a week to have the stitches removed.
Healing very well, still some pain, but nothing abnormal.
There was a problem however, while the frozen section on
the tissue sample was deemed to be 'clear,' the full
pathology study (which is always done regardless of a
frozen sections results) showed there was a very large
amount of the tumor which remained in my face.
This was not my surgeons fault. I could complain I guess
about the work of the pathologist, but since I once worked
in that field, I know it simply is the way it is.
Being a very nosey person, and since I had some knowledge
in the field I called the pathologist at the hospital and
arranged a meeting with him, and to see the slides of my
tissue. The pathologist was very obliging and talked to me,
explained what had happened and I did see the slides. It
was at least somewhat encouraging as basel cell carcinomas
very rarely migrate to other body parts and I could see
there were not a lot of cells which were 'loose' in the
tissue. The pathologist scheduled a meeting with my surgeon
and a map was made of where the next surgery had to be done
and how much area it would encompass.
Another appointment for yet another surgery. At this point
we started to put numbers on the surgeries. Number three
was set up.
Other problems popped up. I've got scar tissue developing
from the previous two surgeries. Those would have to be
repaired as well as the rest of the tumor removed. The original
surgery left a scar, right alongside my nose of maybe a half inch.
Surgery #3 came off without any problems, the report came back
completely 'clean,' including all margins and I was on my way
I did have a lot of face pain in the area right below my
right eye, my surgeon explained the amount of repair,
which had to be done in four layers, was what would have
been done if I had gone through a windshield at 65mph.
Yes, I was going to have some pain, probably severe, since
many nerves had been cut. The scar has now grown to about
six inches in length. My surgeon did a wonderful job, it
is barely visible even if you know where it is.
He prescribed some pain meds, the first one worked well,
but after about ten days I was so depressed I could barely
function. I checked the med out on google.com and sure
enough, a major side-effect of any use over 'short term'
was depression. We changed meds. Enter Vicodin.
After about six months, the face was seemingly taking on
a life of its own. It developed three lumps on the scar. Not large,
about half the size of a pencil eraser. But they seemed
to be where the pain was, mostly alongside my nose where
the cancer had been. My surgeon thought perhaps a cortizone
injection would stop the problem and let the nerves heal.
We did that. No help.
Another surgery appointment, #4. This one in my surgeon's
office. Local anesthetic and the lumps were removed. After
a couple of weeks it became obvious it did not help.
My surgeon, who is really terrific and the only double board
certified doctor in this region, sent me to a pain specialist.
The pain specialist prescribed some 'crazy pills' which were
developed to treat other severe nerve problems. I got a little
relief but was so screwy I could not function, much less work.
There was another option, cut the offending nerve. The nerve
has now been identified as to what a layman can understand (me)
as the 'toothache nerve.' It runs under your eye on each side
of the face, over the cheekbone, next to your nose and down into
the top jaw. So what I was having was a full face toothache on
the right side. A bad one. The nerve specialist said he would
not cut the nerve, the possibility of losing the sight in the
eye was too great, plus I would have no feeling in my face on
that side. Remember the Vicodin? Back on it.
Our pharmacist Craig (who compounds my thyroid medicine)
suggested a topical pain ointment might help, he worked with
our health care provider, Betty, and produced a sample to
try. The results were hardly noticeable - and the surgeon
said later the nerve was just too deep for that approach
to work. But I appreciated the attempt and concern.
Over the months I had developed a habit of resting my
hand on my cheekbone and pulling it up away from my nose.
It seemed to help a lot.
Back to the surgeon. I explained what the pain specialist
had said (and he had the report) and also explained I had
now gone to taping the right side of my face up. I also
now had sore spots on my face from the tape, (but I did
discover 3M Blue Painters Tape left the least amount of
adhesive on my face.) I'm sure some folks thought the blue
tape was a new fashion statement, but no one said a word.
I would stick a piece of the blue tape to my cheek and pull
it back and up, just in front on my right ear.
Monday August 15, 2005 was surgery #5. This one was done
also as an out patient at the surgical center in the same
medical complex where my surgeon's office is. Because of
the anesthetic problem I was the first surgery. No problems
at all, in at 7:00 am, about an hour and a half for the surgery
and in recovery until 12:00. (They need to monitor to make
sure my temperature doesn't spike up.) What my surgeon did
was a "mini" face lift to pull the flesh and muscle upward
off the problem nerve, just like my tape had been doing.
While he was at it, he also took an extra flap of skin from
my eye lids since I had lost about 25% of my peripheral vision.
I had both sides of my face done since I would look a bit like
I had a stroke if only one side was done. The right side is
more severely 'lifted' and to keep it from dropping over time
(gravity) he anchored it to the fascia.
Here's what it looked like.
Before surgery #5, scar from upper nose to nostril to mid-cheek
Surgery day, no swelling yet
Day 3, some swelling
Swelling subsiding, interesting colors
8th Day, stitches out, still some swelling.
The face pain from the toothache nerve is now totally gone.
I still have some pain from the surgery itself, and a little
swelling. It will go away.
I said at the beginning I made a mistake. I did. I tried to
save some money. I was not covered by any insurance back in
January in '04 when I had the original surgery. The cost to
have it done at the hospital was going to be several thousand
dollars and having it done in my family physican's office was
a couple hundred. I could have waited six months when the
insurance would kick in, but because it was the "C" word, I
didn't want to wait. (Since I knew what it was for over a
year that seems a bit dumb, don't you think?)
The truth is I didn't save any money. I paid for the original
surgery, and surgery number 2, and 3, the cortizone injection
and pain specialist. Bless my surgeon he did not charge me for
his fees for #3, #4, and part of #5. The insurance did cover
most of the costs of #5.
Fighting pain for months and months was a cost I was not
prepared for. I don't think I handled it well, and as of
today, I am still on the Vicodin, taking less of it - but
I expect by the time I have my next appointment in a month
I will not be on it at all.
Can you learn anything from my experience? I sincerely hope
so. If you think you have a skin cancer problem, or if your
husband or wife are concerned - get to a skin specialist
(preferably a good plastic surgeon) and have it
taken care of now. Most of the folks will take payments
if you don't have insurance. Even the
local hospital here agreed to monthly payments.
I'm not proud of my attempt to save some money - it was just dumb.
I know better. I made a mistake. ~ DLB
If you would like to comment on this or any other article please feel free to
post your views on the FAOL Bulletin Board!