Friday, February 8, 2013

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.

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