own word


In Her Own Words, 
A Message From Julie

 

This is Julie's story in her own words. She wrote this on her blog December 9, 2006. Many followed her story for months before someone who didn't know the beginning finally asked "how did you know?" 

This is her story in her words. It is lengthy, but it is a good read and it's why we are here.

IN THE BEGINNING…

I have a mole on my back (or had I should say) that I have had my whole life. Right in the center, in between my shoulder blades. It has always been raised and oddly shaped, but aside from sometimes scratching it, it had never given me problems. When I was pregnant with my son Jack in 2003 Brendan noticed that it had started to change. I said I would go have it looked at and after some time went by, probably two months, I finally got an appointment with our family practitioner. (MISTAKE 1 – if you have a suspicious mole go straight to a dermatologist.) He looked at it, knew I was pregnant and said, yes, this is something we might want to go ahead and have removed after your pregnancy. OK, sounded fine. Skipped home and enjoyed my simple life.

Jack was born in September of 2003. Brendan mentioned the mole periodically, but my family doctor didn’t seem that concerned…why should I? Plus, skin cancer was something in my mind that didn’t seem that big a deal. You scoop it off the surface and it is done. I knew LOTS of people who had things removed and were fine. (OBVIOUSLY MISTAKE 2). I was really, really naive about the seriousness of skin cancer and didn’t even really comprehend Melanoma at all.

When we went on our annual 4th of July camping trip my friend Janene (who has been mentioned previously as a fabulous nurse…but remarkably, at this time she wasn’t working at MDA…pre-cursor???) saw it and said, “Girl…you should get that thing looked at!” So, off I went again to our family practitioner…(I know, I know, we are already at mistake number 3). By the time I finally made this appointment it was already August. THIS time he looked at it and immediately referred me to a dermatologist…Dr. Jan Schwartz…who was great and immediately began to sober me up to what this was. Dr. Schwartz got me in her office, looked at it and said, “This is coming out…today.” I had Hallie with me, one of the nurses held her and she removed it and sent it off for biopsy immediately. But really, even at that point I wasn’t that concerned. I still didn’t think it could affect me internally.

In a couple days I was on my way to the grocery store and the phone rang. It was Dr. Schwartz. She asked if I was driving and told me I should pull over. Now, I was starting to get a little nervous. She told me it was positive for Melanoma gave me a referral to a surgeon at MDA (Dr. Paul Mansfield) and gave me her cell number, her home number and the authority to call her whenever I started to have questions. I drove home…a little stunned, but STILL not getting IT. I called Brendan (my husband). He came home. We talked a little and HE called Dr. Schwartz. They talked a while. When he got off the phone, he sat down with me at the dining room table, took both my hands. His eyes were red and filled with tears and he told me, “No matter what, we are going to beat this thing. We are going to fight and we are going to beat it.” When I saw how scared Brendan was, then I started to realize what was going on.

After that, everything did happen very quickly…The initial biopsy of the mole revealed a Breslow’s depth of 1.9 mm, it was ulcerated (which is what brought us to our current situation) and a Clark’s level IV. It was big by this point. Dr. Mansfield performed surgery to remove a wide margin around the mole. He did a great job. As I stated earlier…it couldn’t have been anymore in the middle of my back. I don’t remember the depth he went to, but I know that he removed a section of my back 7” long and 2” wide (not cm, but inches). I also had lymphocyntigraphy (it is entirely possible I have misspelled that word) which maps what lymph nodes that particular area drains to. Mine was armpits. So, they also removed nodes from there to biopsy. It was a long surgery…5 or 7 hours I think. But, the results came back positive (positive in a GOOD way, not bad!) from that also. The margins showed no sign of metastasis and the lymphatic system was clean. All looked well and again, I skipped home to my normal, happy life.

I was put on a regular check up system at MDA. Every six months I would go in and have blood work, X-rays and office visit. When I went last March 2006, I was pregnant with Kendall, so I just had blood work and no X-rays…not so great for a developing fetus! In August, I had my X-rays in addition to the rest. This time the X-rays showed a shadow and some of the blood work came back abnormal. This began our battery of tests. Within about a week I had had a follow up appointment, a CT scan, biopsy, and finally, positive diagnosis. But really, even THIS time, I didn’t understand the severity. I talked to Dr. Mansfield and he gave me the news…on a Friday. My mom was on her way over when he called me. I am so glad she was on her way over…that was just happenstance. She was planning to come over to help me out with something. I had already called Brendan and told him that Dr. Mansfield had called and left me a message to call him back. I knew then…if it was good news his assistant would call and leave me a perky message. Brendan was on his way home too.

Looking back, I can only imagine what Dr. Mansfield must have been thinking. My attitude was so matter-of-fact. “OK, what now?”, “It is what it is…how do we fix it.” It was just skin cancer…it can’t be that bad! People don’t DIE from skin cancer! They have brain tumors, or pancreatic cancer…these are biggees. Not skin cancer. Again, it was after Brendan got home and talked to Dr. Mansfield that I started to get IT. This time, we sat on the front porch swing and he gave me the, “We will fight it and we will beat it!” speech. This time, I was in tears too. I got the diagnosis on Friday am and by Friday afternoon they had me set up with an oncologist the following week and an MRI appointment that Friday afternoon. Evidently a common route of travel for Melanoma is directly to the brain. This was also sobering news. At my regular check ups, Dr. Mansfield always asked about headaches…but I was naive then.

That brings us to now. The best news we got was that the brain was clear. The assistant DID call on that one. My melanoma had spread through the ulceration of itself and not through the lymphatic system to my lungs and liver. During the time I was diagnosed and actually started treatment it has started growing in my breast as well. Evidently, melanoma likes organs and areas that are rich in nutrients…oxygen and blood. It feasts and moves quickly. Brains, visceral organs and breasts have these qualities.

Lessons learned along the way…

1. Regular check ups are a good idea for everyone…not just the freckly and fair skinned. I am neither. And GO TO A DERMATOLOGIST! Brendan and I can’t help but think that if we had when we noticed it at the beginning…while I was still pregnant that this all would not have happened…notice, I did not mention the family practitioner…we don’t see HIM anymore.

2. When you go for your check up, take off toe nail polish. Melanoma’s can grow under your toe nails and a lot of times go misdiagnosed as a fungus. African-American’s tend to be the most susceptible to this…I guess genetics, but it is something I have learned.

3. Screw the fancy cute bathing suits. Every member in our family now wears a long sleeved swim shirt and the kids wear floppy hats. We ordered them from Coolibar. They were not cheap, but they are UVA, UVB and chlorine resistant. The long sleeves are actually nice. We live in Houston and we don’t feel any hotter than having exposed skin and having the sun beat directly on it.


That is Hallie, Jack and their cousin Hannah. Hallie isn’t wearing her hat, but she has one too and usually wears hers. Jack is actually fair skinned, so he wears a body suit. I think I actually got the suits from LL Bean or something…Brendan has a Coolibar shirt and so do I…

4. Pregnancy, by its nature is a time of rapid cell growth. My melanoma’s probably grew quickly because both times I was pregnant. Keep an eye on those moles! The things you look for are a change in shape, color and size. Mine was all of them.

5. Why? I did have a really, really bad sun burn as a teenager as a reaction to a medication I was taking. Was that the pre-cursor to kick this thing off??? Maybe, but it isn’t known for sure. What is known is that Melanoma is becoming one of the most common forms of cancer. I think it does have to do with a weakened environmental system, but that coupled with out door lifestyles, lack of protection against the sun and lack of education about the seriousness of it. In fact, one of the things Brendan learned when he went to the Melanoma Symposium was that they are trying to put a surgeon general’s warning in tanning beds…similar to the warning on cigarettes. Tanning beds are NO SAFER than direct exposure to sunlight. IT DOES THE SAME DAMAGE!!

So there you go…sorry it was so long, but it was a long drawn out experience for us. Hope you learned something and hope you get those dermatologist appointments scheduled!!

Love to all.. YAY GOD!

-Julie


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