Thursday, January 26, 2012

A Setback

This has not been a great week! Doctor appointments every day and today was my oncologist. His news was not good...I am no longer in remission! The tumor in my lung has started to grow again and there are two new I'm off the MEK162 and moving to Yervoy! I start next Thursday, waiting now to find out if my insurance will cover it. I am so blessed to have so many prayer warriors praying for me and my family. I told my Facebook friends about 2 hours ago and my phone hasn't stopped beeping with comments letting me know people are praying for me!

Tuesday, January 24, 2012

Why I call this Blog Club Melanoma!

I decided that it is time I explained my reasoning for calling this Blog Club Melanoma. When I sat down and decided to start blogging the first question was what it was going to be called.  Honestly, I hadn't thought about it before that, so I looked at the other blogs that I was following and thought about what there reasoning might have been.  I knew that I wanted to have Melanoma in the title and as I was thinking I remembered when I was first diagnosed that I thought about letting my friends on facebook know by saying that I had been nominated for the cancer survivors club and I hoped I made the cut. OK I admit it I have a warped sense of humor, but that was before I knew much about Melanoma and I also didn't understand that as soon as you are diagnosed you are a survivor.  Needless to say my wife shot that idea down. I thought about that idea and found many applicable things that fit.  I've listed some of the Club Melanoma member rules:

     1. Membership is exclusive, you can't apply for it or be recommended, you have to be diagnosed.
        (Though membership is exclusive you can increase your odds of being a member through
        tanning beds and overexposure to the sun.)

     2.  We don't want new members!  The Club is already entirely too large!

     3.  All memberships are lifetime memberships!  We do have professionals looking for ways to get
        us out of the club and shut it down!  So far no luck.

     4. We have a roller coaster and members are required to ride it.

     5.  Even though we are not a secret club, we are largely underrated and ignored.

     6.  Our members are often involved in experimental drug use.

     7.  We don't have a secret language, but those who hear us talking may think we do because we
         use terms that sometimes sound like a secret language.

     8.  We do have associate memberships, however these are reserved for family and close friends
         and are not always lifetime.

     9.  We do not have a roster of members, a directory, or membership cards and no secret

     10.  Our members are known to hang out in and around oncology clinics.

     11.  We do not require our members to believe in God, however be forewarned that those of
          us who do will pray for all members regardless of their beliefs.

     12. We are fighters and will fight to the death!

God Bless

Should I Be Concerned!

You'll notice that I didn't put a question mark at the end of my title, because for melanoma survivors this is a fact of life!  What brings this to mind is my own situation, for the last three or four days I have had a sore throat, which affects my ear, which was affected by the radical neck dissection and radiation that I had. Yesterday I had a CT scan and this morning they called to schedule me to have the neck portion redone tomorrow.  They didn't know why! I do know that the technician that did it was working his first day and seemed unfamiliar with the equipment, but?  There's always that but in the back of your mind, whether it be a sore throat, a new ache, a pimple or a test that they want to redo, it's always there.  That what if this is a new attack, what if the drug or treatment I'm taking isn't working. We all live with it.  I watched a doctor show the other night where they were giving a patient the option of removing a brain tumor or waiting to see if it started to grow, they cut it out. Then the doctor reveals to his colleague that his father and brother died of a disease that could be genetically tested for, but he had not been tested because if it was negative he would be living under a death sentence.  Just off hand I would prefer either of those scenarios to the one that melanoma gives us.

Sorry, I kinda got off track!  What gets me through this?  Faith in God and the fact that I don't have to understand the whole picture.  Hearing about others facing these same issues on Pages like Melanoma Prayer Center, Stomping out Melanoma, Kick Cancer, Aim at Melanoma, Dodged a Bullet - Fight Against Melanoma, Miles Against Melanoma, The Skin Cancer Foundation, and Black is the New Pink - Fight Melanoma. All great pages!
Please Pray for Me!
I'm Praying for all Melanoma Warriors and their families!

Sunday, January 15, 2012

Embracing the Mundane Monotony of Everyday Life

Today when I was in Sunday School we were talking about joy and thankfulness and someone said that they had a tough time being joyful in the mundane every day things.  Wow, have I changed, just over a year ago I would have agreed, but not now, I now find joy in the mundanely monotonous details of each day.   I have learned that it is the journey that is important, not reaching a goal or destination.  I now live my life like I used to live only on vacation. What I'm saying is how many of us book a cruise for instance and then try to figure out shortcuts to get back instead of enjoying the different ports that you pull into. In each port you try to schedule the things that you will most enjoy and usually find that you don't have enough time to do everything.  This is how you should live your life, where ever you find yourself enjoy the moment, the people, the places, the emotions and that you are there. Now I can't speak for everyone whose ever had cancer, heck I can't even speak for everyone whose been diagnosed with stage 4 melanoma, but I can and will speak for myself, I thank God for every day.  When I am in pain I am thankful for the pain.  I still have parts of my neck where I don't feel anything and I can remember one time when I had a staff infection and the doctor was sticking a swab over 2 inches into an abscess on my neck and I was totally unaware of it.  I prefer the pain. 

I don't know if I'll be in remission for one more month or twenty years, but I refuse to waste the time that I have worrying about dieing.  I will spend my time loving, laughing, learning and teaching others about the dangers of skin cancer and melanoma in particular.  I will also continue to pray for all those who are dealing with melanoma and their families.

Peace and Grace

Tuesday, January 10, 2012

Ode to Lab Techs

Thought I would share a little poem I wrote for the techs in the lab. It seems like I spent a lot of time sitting in their chairs as they try to find a vein.  Sometimes I feel sorry for them because we cancer patients can be a little testy sometimes.

We work and toil but it's all in vein
We strive to help and cause no pain
But alas I fear tis all in vein!
It needles me to hear it said
With all this work we're in the Red!

Not much, but it made them smile, and I like smiles!

Saturday, January 7, 2012

Whos Got Your Back?

The phrase "I've got your back" goes way back in military history and generally referred to looking out for a buddy so he wouldn't be attacked from any direction outside his normal field of vision and often involved standing back to back. This morning I got a message from my friend Suzanne saying that she has had several moles removed from her back that her husband had been watching. Fortunately they were not cancer, but it got me thinking about how important it is for skin cancer patients and for that matter everyone else to have someone to check the areas they can't see and note the location, size and color of every mole, birthmark or mark. My melanoma was behind my right ear and though I could feel the node, I had to rely on my wife to be my eyes. I think this would be a good catch phrase for skin cancer.



Friday, January 6, 2012


Some pictures of me!
The first one is about a month ago. Since then the mustache has become a handlebar and i have a goatee. The second was shortly after my first surgery, the skin graft didn't completely take! The last one was taken about a year ago before I was diagnosed.

Thursday, January 5, 2012

The positive side of Melanoma!

One year ago today they did the first biopsy on the mole behind my right ear and I woke up this morning thinking about all of the good lessons I have learned from my time at Club Melanoma. At that point I decided it would be beneficial to me (and hopefully to others) to list them.

1. Most importantly I learned that I am loved. This is something that I always knew, but when people who love you find out that you have Stage IV Melanoma they have a tendency to verbalize and express it in so many ways.

2. It has taught me to verbalize and express my love for others more fully and openly.

3. It has taught me humility! While going through radiation and interferon treatments friends (some I hadn't even met before) came and did yard work and offered to get me to appointments when my wife wasn't able to. Being the type who is more comfortable doing things for others made this a hard but much needed lesson.

4. I learned that cancer must have made me better looking! These days everyone I run into tells me how good I look!

5. I learned to trust God more and recognize the miracles that occur in my life (this could be a whole entry).

6. I learned that while cancer can do many things to me, it can't cripple love, shatter hope, corrode faith, eat away at peace, destroy confidence, kill friendship, suppress memories, silence courage, invade the soul, reduce eternal life, conquer the spirit, or lessen the power of the resurrection.

7. I learned that my sense of humor does not require me to feel good. Sometimes humor is the best way to rescue people who love you and don't accept this type of news well!

I am sure I have missed some, may have to add some later. I would love to hear from others on this subject.

I love you all and am praying for you

Sunday, January 1, 2012

One year ago this Month

On January 4, 2011 I was diagnosed with Melanoma! It took 2 months and 2 surguries to determine that it was stage iv. The first surgery was to remove the melanoma from behind my right ear and 6 lymphnodes.  They found cancer in 5 of the 6 lymphnodes and that led to the second surgery which was a parodadectomy and radical neck disection. During that surgery they removed more lymphnodes for a total of 41 and a total of 14 had cancer in them. Then it was on to radiation therapy and things I could never have imagined!  For instance, I was unaware that if you have radiation therapy to the jaw area you have to have a dental evaluation first.  Any tooth that can't be certified to last for the next 15-20 years has to be pulled before therapy. This is due to the fact that you can never have a tooth removed from that jaw again or you could lose the jaw.  From what I understand this is due to a combination of the loss of saliva glands and changes in the blood circulation in your jaw.  I lost one tooth because it had a shadow on the root where the pin was in it.

Now we come to radiation! Because it was on my head, I had to have a mask made to hold my head in the exact same position for each treatment. This mask is tight and mine was too tight over the eyes, so they cut eye holes. Now I got to watch the machine that was shooting the radiation. It totally reminded me of a scene in Star Wars where the death star is getting ready to fire and the shields are sliding together to aim the beam. Weird!  I had five treatments in which they said I received more radiation than is normally given in 20 treatments.

Next I moved on to interferon treatments.  Three times a week for four weeks. Finished those and moved on to the home injections and did those for four weeks before my oncologist decided to take me off of it (wasn't doing what he wanted). 

Drug trials were the next step! They submitted tissue from my tumor to see if I qualified for the drug trials. Something about the dna from my tumor had to be different from my dna.  While they were testing it, I went to a Buick convention in Boston.  When I got back and went back to my new oncologist, oh did I mention that my oncologist retired, anyway they told me that the trial was closed!
Did I mention that Club Melanoma has a roller coaster! Then in his next breath he said "But you were accepted because you were already in screening. (Back at the top) So I qualify for the trial and in the his next breath "Now there is just one more requirement for the trial, you have to have a measurable tumor." (bottom again) Conflict- do I pray for a tumor or pray for no tumor? I prayed for God's will.
They found a tumor in my lung and I started MEK162 at the end of July. Three pills in the morning and three pills at night and the side effects are acne and diarrhea when you first start it. Let's jump ahead to September when they did an MRI and a CTI.  My tumor was reduced by 45% and I am now in remission.

All that being said, it is now January and I find myself reflecting over the last year and trying to decide if this was a good year or a bad year.  On the good side I got to visit my daughter and son-in-law and Grandson, I got to visit my other daughter, son-in-law and Granddaughter and be there for my second Granddaughter's birth and I got to visit one of my sons. I made it through two surgeries, radiation, interferon, got in an experimental program, and am in remission.  On the bad side I found out I had stage IV melanoma and had some discomfort and pain. Forgot to mention on the good side that I found out I'm going to have another Grandchild.  Ok, it's been a good year. I realize that I am rambling and I promise that in the future I'll settle down, but I'm just realizing that while some of you haven't been through anything like this, there are others out there who will understand and this is the first time that I have spoken to others who have experienced what I have.