Part Two:
For Part One, Please scan below to read The Glass House.
Lean On Me
It was a
quiet drive home. My father was a colon
cancer survivor and well aware of what was ahead of me. I had been his support system throughout his
cancer surgeries and treatments and saw what he had endured. Now his daughter was facing all the emotional
and physical pain in her own cancer journey.
In his silence, I could almost
feel his fear and hear his heart breaking.
I thought of
my husband Steve, who was away on a business trip. In his years of travel as an airline pilot,
this would be the first time I would call to ask him interrupt his schedule to
come home early. Steve always felt he
was fortunate to be able to travel and not worry about home because I was independent
and strong. I always handled all the
home matters. But this time I needed him
for me, and there was no one else on earth but him to fill that void.
Steve was
able to get relieved from his trip and fly home right away. It was October, 1, 2007. This would be the beginning of our melanoma
journey together.
Making the
Rounds
Before
leaving her office, my podiatrist had given me a business card of an orthopedic
surgeon. She had made an appointment for
me to see him right away.
We arrived
that afternoon to see the specialist, both of us still reeling with the news
that I had cancer. It was an
overwhelming office visit. The
specialist felt that if the melanoma had not spread, I had two choices. The first was to remove all the cancerous
tissue and surrounding margins and reconstruct my heel. Otherwise, his advice was to amputate my
foot. If I learned that the cancer had
not spread, I could come back to him for the amputation and see another surgeon
for reconstruction. Before I left his
office, I was given the names of several surgeons.
The following
day I saw a general surgeon, who examined my foot and said he would be willing
to remove the melanoma if it had not spread.
He was concerned that there might not be enough tissue remaining for
reconstruction, and advised that I consult with a plastic surgeon.
I needed to
find out if the cancer had spread before anything else could be done, so I made
an appointment with a highly recommended oncologist. His appointment included an exam and lengthy
medical history. He sat back in his
chair and listened to my story of stepping on the glass and the expectation
that it was a granuloma. He asked how I
would feel about getting a second opinion on the pathology, since he wasn’t
familiar with the lab that was originally used.
I agreed, and he had the specimen submitted to their hospital pathology
department. In the meantime, he ordered
a PET scan and Brain MRI.
In the days waiting
for the test results, I consulted with a plastic surgeon. He had concerns about reconstruction. He explained the usual procedure in foot
reconstruction, using the skin from the arch and creating a flap. But in my case, that wasn’t possible. After a few minutes of thought, from a
plastic surgery aspect he advised against reconstruction.
With that
knowledge, I waited to hear from my oncologist about the test results. The second pathology confirmed the original
diagnosis. Right heel – Deeply invasive melanoma. Epithelioid Cell Type. Breslow’s Depth 8.0mm.
Clark’s Level IV, at least. Perineural
Invasion Present. Lesional Cells Extend to the Specimen’s Superficial and Deep
Peripheral Surfaces. Malignant Melanoma
In-Situ.
So the
melanoma was real and clearly growing.
The second pathology confirmed it.
But the good news is that the scans came back clear! It doesn’t show signs of spreading into my
organs yet. The bad news is that we
still have this diseased foot to remove.
No More
Pantyhose!
I looked
closely at my foot and tried to memorize every curve. How odd that it would be leaving for
good! I made a second appointment with
the orthopedic surgeon. This time I would be scheduling the amputation. When he
saw me, he said he had reconsidered the surgical point, and decided that it
would be better for my mobility to remove my leg just above the knee. I didn’t even react to the change. I think I was still numb from the cancer
diagnosis. But before he would schedule
the amputation, I had to find a surgeon who would remove the sentinel lymph
nodes during the surgery. Once I found
the surgeon to remove the lymph nodes, they would coordinate their schedules
and we would have a date for the surgery.
Who to call
now? I thought of the surgical group
that had taken great care of my father during his cancer surgeries. I called and scheduled an appointment, not
with my dad’s doctor but with another surgeon in his group.
“Long
Distance, Please.”
This surgeon
sat quietly and listened as I told my story once again, from stepping on the
glass to the pathology reports and finally ending with the amputation. I explained that I needed him to coordinate
a surgery schedule with the other doctor and that he would remove the sentinel
lymph nodes and the other doctor would be removing my leg.
When I was finished
with my story, he examined my foot closely.
Then he asked if we would mind waiting while he made a phone call. We said yes and waited. And waited.
Then he returned with a new idea.
He told me
that he had called a contact he had at MD Anderson in Texas. He said they had great results grafting the
foot with skin from the patient’s stomach and buttock area. After hearing of their success, this doctor felt
he could remove the malignant tissue from my heel, and after a period of
healing, he could use the stomach graft procedure to reconstruct the area. At the same time, he would remove the
sentinel lymph nodes and have them tested to make sure they were clear.
It was a
joyous moment for me and my husband. “Yes, yes, absolutely, let’s try it!” We scheduled the surgery date before leaving
the office! We couldn’t believe our
fortune to find this doctor so willing to try and help me keep my foot when the
others felt it wasn’t possible. He also
offered to contact the orthopedic surgeon and let him know of this decision.
Getting
Down to Business
I did have
the surgery and it was a complete success.
The lymph nodes were clear. He
was able to graft my heel from my buttock skin. As time passed, the graft took well and I
have a functioning foot. Although
scarred and a shoe size smaller than my left foot, this wonderful doctor saved
me from an amputation.
After healing
from the foot surgery, I had to focus on treatment of my disease. This meant routine visits and screening with
an oncologist, and I returned to the one I had originally seen when I was first
diagnosed. He was very kind and a great
listener, but he had very little experience with melanoma. It had been a few months since my last scans,
so he ordered another series. I felt
comfortable going in for the tests because a few months earlier my sentinel
lymph nodes had been clear.
When I returned
to him a week later for the results, I was stunned to find that the scans
showed a tumor in my right pelvis. I
couldn’t understand how that could be possible!
How could it have spread without leaving malignant cells in those first
lymph nodes? Back I went to my wonderful
surgeon, who removed the malignant lymph node from my pelvis.
What
now? My oncologist first ordered a
series of chemicals that I would inject into my stomach on a two week revolving
basis. My stomach became blotched with
circles of inflammation from the shots.
Two months into the injections, the medication was recalled. That ended the shots at home. Next, he decided to try interferon. After two days of being violently ill (it
would start one hour after the drip and last for ten hours) he decided to stop
the interferon. I went back in to see him
and discuss my options. I asked him if
he knew of any melanoma experts.
He said he
had been to a seminar and heard a speaker from Moffitt Cancer Center who
specialized in melanoma. He gave me his
name and I went home and called for an appointment. That’s how I began my treatment in Tampa at
Moffitt Cancer Center’s Cutaneous Clinic.
I remain under their care to this day.
The
oncologist at Moffitt scheduled his own scans.
He, along with the surgeon on the melanoma team, felt that the previous
surgery to remove the lymph node in my pelvis was incomplete. They said that all the lymph nodes in that
area should have been removed, not just the one node. They scheduled a surgery
to remove all the lymph nodes in my right pelvis and groin, and I did, in fact,
have another malignant lymph node.
This surgery
was extensive and left me with life-long lymphedema. Post op was rough, as I dealt with both MRSA
and wounds that reopened. It took
months of recovery and trips back and forth to Tampa. Because of the MRSA, I was so ill that I was
unable to receive the usual treatment protocol after surgery. So I never had any chemo, radiation or
biological treatments. When I asked my
oncologist why I never received any other treatment, he said at the time I
wouldn’t have survived it.
Since that
time, I’ve been monitored closely and spent many hours being tested and
evaluated. So far, I’m still showing no
signs of malignancy. However, once
melanoma has spread, it’s a wait and see disease. There is no cure. You have to pray that it’s located in an area
that can be cut out.
So we
watch. And pray. Wait for pain or a lump somewhere. Use sunscreen. And go to our appointments. First every three months, then if you’re lucky
to go long enough disease free you graduate to every six months.
I would like
to have more scans to insure that nothing’s going on inside of me, but my
oncologist tells me that there’s no data showing that frequent scans extend the
life of a melanoma patient. And of
course, the radiation’s not good for you.
And a tumor won’t light up on the scan until it’s grown to at least
1mm.
I have my
skin checked frequently and I’ve had a ka-zillion biopsies. The skin doctor is overly cautious with me, but I
appreciate her attentiveness.
I hope this
story will help you to understand how important it is to monitor your
skin. I never had any mole or spot on
the bottom of my foot like the pictures show in magazines. But I live in Florida and go barefoot a lot,
which means it’s easy to get patchy, dry or callous skin on your feet. Melanoma can be skin colored and a dry,
patchy spot. If you have any concerns
about any dry area on your skin, please think of me and see a dermatologist
right away.
