Wednesday, October 31, 2012

I Effin HATE Melanoma

I saw my surgeon today for the results of my CT scan. They were not what I wanted to hear. One of my lymph nodes is a little bigger than it should be.  The doctor is hoping it is just an infection.  He said "You have little kids don't you?" I said yes, and thought, they have been sick, but didn’t tell him that.

He said I need a PET scan. If that comes back negative, he will also do an ultrasound where they stick a needle in my neck to be sure. If it lights up in the PET scan, I will need a neck dissection. If it shows up in the neck and anywhere else, I will need treatment.
The doctor then held my hand, told me that he was sorry he couldn’t give me the news I wanted to hear. He reminded me that this is NOT a diagnosis. Then he said, “Make sure you bring your husband next time. You are here alone today, and I think you will be ok. But just in case you get not-so-good news next time, bring support.” I was anxious, but I honestly didn’t think I would support today.

I tried to contain myself and be strong, but my eyes welled up. I started dripping tears as I sat , waiting for the PET scan to be scheduled. I sent a text to my family because saying it aloud was out of the question.  I couldn’t wait to get out of there and be alone. In the elevator, I started crying and hit the wall.  I had to stop myself. I just wanted to hit something so badly.  A walk across the street, another elevator ride to the 5th floor, and a walk to my car, I got in and lost it. I know this is NOT a diagnosis. But it’s been three months. Really, I couldn’t get NED (no evidence of disease) on my first one? I start thinking of all the bad in me, and that this is why I deserve this. Then I think, but isn’t there more good to me than bad? Then I just want to shut down. I don’t’ want to talk about it anymore. I don’t want to read about it anymore. I want to sit in front of my television and watch Psych reruns. I want to give up on my blog, because- what’s the point? Forget the trip to Charlotte for the AIM at Melanoma walk.  I have to worry about ME right now, and not helping everyone else. 

I know NONE of those things are the answer. Right now, I don’t know what the answer is. I am angry and scared. I am hopeful and humble. I want to punch something until I don’t hurt inside anymore. I am all over the place, but I came here to the blog because running away isn’t the answer.

Tuesday, October 30, 2012

Are You Deep in Denial or Frozen in Fear?

Today I was thinking about how long some are willing to wait before seeing a doctor about something that concerns us. A friend of mine, actually, she is more like a sister, shared with me shortly after my diagnosis, that she had a black line running lengthwise on her finger. She showed it to me, and I suggested she see a dermatologist about it. At the time, I had not done much research on the different types of melanoma. I was trying to stay off the internet to avoid feeding my own fears.  Since then, I have read much more about melanoma and the various ways it presents itself. I started to send her texts every couple of weeks asking if she has seen a doc yet. No, is what I keep getting. I have threatened to hurt her (and she knows I am capable and willing to do this), but that didn’t make her go. I have threatened to call her family and her new husband and get them to make her go. Finally, yesterday I threatened to start sending her REALLY scary pictures if she didn’t go. So, I sent her a link to this article about checking your nails.

Amy is another beautiful young woman who has had her life changed by melanoma. I haven’t been able to read much of Amy's blog, but I did look over quite a bit. When you get a chance,  I suggest you do the same. Sometimes we have to be scared into doing what is good for us.

I haven’t heard from my friend since yesterday, but I do know that I  will be calling her AND her family members this week to make sure they all help me to encourage her to go see a dermatologist ASAP. 

So I ask, is it fear or denial that makes us not take excellent care of ourselves?

I know personally, I used being busy as an excuse, but the truth is I kept procrastinating because I just honestly never thought it would happen to me. Not skin cancer. I wore sunscreen ALL the time …as an adult.   I knew nothing, but thought I knew everything. Then there are people like my mom,, who are afraid to find out something is wrong with them. Does that help anything? I ask her. I mean, if something is wrong, it’s not going to fix itself. You have to do something about it, and we all know, the sooner you fix a problem, the better the outcome. 

 From Wikipedia:

 procrastination refers to the act of replacing high-priority actions with tasks of lower priority

What are your high priorities? Is it your health? Your children? Your spouse? Your job? What good would any of those be to you if you weren't around? Don't put off taking care of the most important asset you and your family have- you. 

Saturday, October 27, 2012

Because Most Days, I Just Wish I Didn't Have to Know

It’s been almost 4 months since my diagnosis. As I mentioned before, when I heard the word melanoma, I knew very little about it. I read the pamphlet given to me by my doctor and decided against doing too much research via the Internet after my initial search terrified me.  I am an over-thinker.  Always have been. I struggle to understand why things happen and why people do what they do. A friend once told me, “Some things are not meant to be understood.” I thanked her for her “insight” and came to the conclusion that she was just too lazy to think critically.  When I don’t have an answer, my mind decides on one it feels best fits. Because I NEED an answer, even if it isn’t the real one. 

The more I read about this awful disease, the more paralyzed I became. I decided my mind didn’t need any extra “material.” My imagination can come up with worst-case scenarios all on its own.

So I tried to read mostly educational information and not many personal stories because honestly, they were all too said. I read a fellow warrior’s blog discussing how as a melanoma survivor  you are never determined “cancer free.” You are just described as “No evidence of disease.” Then she went on to say she wouldn’t worry about getting any more scans, because there was nothing they could do to help her anyway. I am not judging her. I wish her the best on her journey. She knows what is best for her, and I , too, know what is best for me. But I couldn’t, no I wouldn’t allow myself to be exposed to anything that was not going to equip me with all the strength, faith, and perseverance  I needed to fight this awful beast.  Therefore, I am still learning a LOT about this disease, but I am not waiting until I know it all before I share what I learn with you.  

 I hope you don’t mind.

Two nights ago, as I was writing about meeting my doctors, I grabbed my copy of the pathology reports from my first excision when they found “abnormal” cells. I wanted to make sure I remembered the depth of the melanoma cells. When I read it, I noticed something that never really stuck with me before- the two words nodular type

So I did a search on Nodular melanoma and came across a great description of all four types of melanoma.This is what I read.

Nodular melanoma (NM) is the most aggressive type of melanoma and accounts for about 15% of all melanomas diagnosed in the United States. It can appear anywhere on the body and occurs more often in males than females. It can develop at any age; however, it is most often seen in people aged 60 and older.

NM differs from other types of melanoma in three ways:
·  Tends to grow more rapidly in thickness (penetrate the skin) than in diameter
·  May not have a readily visible phase of development
·  Instead of arising from a pre-existing mole, it may appear in a spot where a lesion did not previously exist
Since NM tends to grow deeper more quickly than it does wide and can occur in a spot that did not have a previous lesion, the prognosis is often worse because it takes longer for a person to be aware of the changes.

The first thing I thought was how in the hell did I end up with the most common melanoma of senior citizen males? 


After I laughed at myself, I kept reading and that sick, stomach churning fear began to sink in my gut- grows more rapidly in thickness, prognosis is often worse.  This is usually when I “log off” and “shut down” my laptop and my mind. It’s words like that which scare me from writing this blog and promoting awareness. 
 Because most days, I just wish I didn’t have to know.

But after spending all of my life convinced that ignorance doesn’t solve anything, I figured it would be too difficult to change my opinion now. So I must go on.  I have to go on learning about something I never wanted to know about, searching my body in fear of finding something I never wanted to find, and doing all I can to train my body to fight something I never wanted to fight.  

There are definitely a lot of things in life that suck, but there is so much more worth fighting for.