Wednesday, February 13, 2013

Guest Post - Cameron Von St. James

I received an email from Cameron Von St. James regarding his wife's battle with mesothelioma.  This disease is a rare and deadly cancer, with a life expectancy of about 3-12 months.  She survived her treatment and recovery and is still living over seven years later!  Here's their story of hope to share with you.

Going Through Cancer: Our Story
Seven years ago, my wife and I started a new chapter. It wasn't one that we had planned for, or had ever considered could happen to us. My wife was diagnosed with malignant pleural mesothelioma on November 21st, 2005, just a few days before Thanksgiving. The news was especially difficult to take considering that we had just brought a beautiful baby girl into the world. Our daughter Lily was born just three months prior to the diagnosis.  Our future looked bright and happy for our new little family, but cancer changed everything, and sent us down a long and difficult journey of survival.
I started being a caregiver for my wife the moment that we entered the doctor's office together. As I looked at her face after hearing the news, tears were in both of our eyes, and all I could do was wonder how we could ever get through this. What can you say?  The doctor gave us some options for treatment. There was a regional hospital as well as a university hospital, neither of which had a program for mesothelioma. There had to be something else. The doctor suggested that we see a specialist in Boston named Dr. David Sugarbaker. I knew that this was the only option that was going to save Heather from cancer.
There were days spent at work where I stared at the clock just waiting to go home so that I could take care of my wife, check on the baby, and perform as many of the hundreds of tasks that I knew needed doing as I could. I still needed to work. Treatment and travel wasn't easy to pay for. I kept having nightmares of how this was going to end. Was I going to be alone with a baby girl and no home? It was a really troubling time, but I couldn't think this way. I had to be a rock for my girls.
However, help soon came from my new family. Heather's parents were extremely kind and generous during this dark time. They provided support for Lily and even offered a place for Heather to recuperate after her surgery in Boston. I don't know if I thanked them enough for making my family whole again, but they truly did. I will always remember how it felt to not be alone and to have people there with you even when times seem at their worst.
My strongest advice to anyone going through their own cancer journey is to accept every offer of help that comes your way.  I had to learn the hard way that there is no room for pride in a cancer battle.  Once I accepted this, a huge weight was lifted from my shoulders.
Over the following months, Heather would undergo mesothelioma surgery, chemotherapy and radiation in order to fight this terrible disease.  Despite the odds against her, at the end of it all she came out alive, healthy and cancer free.  She remains that way to this day, over seven years after her diagnosis.  We now hope that by sharing our story, we can help inspire others in their own cancer journeys, to never give up hope and always keep fighting for the ones they love.

Cameron Von St. James
Mesothelioma Cancer Alliance

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.

Saturday, October 6, 2012

The Glass House

My melanoma life started in the summer of 2007 when I stepped on something sharp in my kitchen.  Always barefoot first thing in the morning, I reached down to remove what looked like a tiny piece of glass from my right heel.  It made such a small dent in my foot that I wasn’t even sure it broke the skin. Once it started to bleed, l looked closely and saw a tiny open dot on the center of my heel.  I cleaned my foot, put a little antibiotic ointment on the cut and wondered where in the world that glass came from. I hadn’t dropped or broken anything in the kitchen and I kept it mopped clean.

During the first few days, the tiny little cut wouldn't stop bleeding.  I tried all the over-the-counter antibiotic skin creams along with countless bandages (which trust me, won’t stick long on the bottom of your heel.)  Nothing would heal this heel! 
A couple of weeks went by and I noticed it seemed to bleed less. It’s finally healing, I thought.  My heel hadn’t really hurt since the morning I cut it, but it was annoying to have to clean the stains from the inside of my right shoes.
By the end of the month, something new had developed. It looked like the cut was getting circular and bigger.  It was filling in with something that didn’t look right.  I had a routine appointment coming up with my primary doctor so I decided to have him take a look at my foot.

My doctor thought some of the glass had broken off inside of my foot and  developed into a granuloma, which is a special type of inflammation.  He suggested that I see a specialist who would most likely surgically remove the glass and prescribe antibiotics to clear any infection that may have developed.  So later that day, I took out the phone book and made an appointment with a podiatrist who accepted my insurance and had an office not far from my home. 
The podiatrist examined my foot and gave me the same diagnosis as my primary.  She said she needed to go in surgically to clean out the wound because it was possible that glass particles had broken off under the skin.  I really didn't think there was any glass inside, because when I reached down to see what I had stepped on, it was just a small piece laying on top of the skin. But because of the inflammation and infection that might be developing, I agreed to the surgery.  Before I left her office, she asked if she could take a picture of my heel to share with her other associates because she had never seen a granuloma like mine.  

The out patient surgery went fine.  I had to stay off my foot for a while, but I was glad to finally get that annoyance behind me!
I had a post-surgical appointment scheduled a week later with my podiatrist, but I received a call from her nurse a few days after the surgery.  She asked me to come in earlier, on Monday, and at their other location.  I said I would and we arranged a time. She seemed nervous, spoke quickly and rushed me off the phone.  From her voice, I knew something was wrong. 
When I arrived at my doctor’s office that Monday morning, it seemed that the unfamiliar office staff already knew me. The nurse who called me on the phone was standing at the front desk, and she immediately put me into a room.  My dad had driven me to my appointment because my right foot was heavily bandaged from the surgery.  I didn't want him to sit alone in the waiting room so I asked him come in with me. 
In a few minutes, that same nurse came in, stood by my side and reached over to hold my hand.  I was right. The news was going to be bad.  My doctor came in and told me that I had melanoma.  The biopsy results showed that it was a deeply invasive melanoma, with details of Breslow’s Depth at 8.0 mm and Clark’s Level IV (at least)... melanoma in-situ.  Her eyes were tearing as she explained that when she received the lab results, it was a complete shock to her because she had been sure it was a granuloma.   She told me that she had contacted my primary about my health crisis.  Together they had decided to give me the weekend and have me come in on Monday for the news.   
I knew it was going to be bad news, but I was thinking maybe an infection, or more surgery was needed.  I never expected to hear that I had a life-threatening cancer growing inside of me.  For a brief moment, it felt like someone had turned on a dimmer switch inside of me.  Everyone in the room had tears in their eyes, but nothing was sadder than watching my eighty-two year old father sit quietly in the corner weeping over his daughter’s diagnosis.