CancerGuide: Larry Loose - Metastatic Melanoma

My original diagnosis was made in May, 1989. A 1mm, red bump on my nose. Looked like a small blood blister. It was removed by surgery and I began seeing an oncologist every six months. It was Stage 1 so the treatment, following surgery was "Watchful Waiting." This went on for 9 1/2 years with no sign of recurrence.

In October 1998, a routine X-Ray of my lung found a 2.5cm tumor. Further CT scans confirmed it was melanoma. Shortly thereafter I had it surgically removed. It amounted to about 20% of my lung capacity. I was in the hospital for about 7 days (my Dr sez I'm a good healer - probably because I've had lots of other surgeries...).

When I got home, I began to research possible treatments on the Internet. I had an agreement with my oncologist. I would look for treatments and he would review what I found and, together, we would select what we thought was the best way to proceed. I found about 100 different treatments that looked like they were more than wishful thinking.

What I also found were statistics. Mortality statistics... They told me that only 8 of 100 patients with my cancer & stage lived 5 years. I am a positive, happy guy. I have never been in anything someone would call a depression. I went into a depression. Who were the other 91 people who would die with me in the next 5 years? This haunted me for over a month, as I continued to research treatments. Why worry about treatment. I'm going to die anyway. Let me die with as much dignity as I could find.

Did I share this with my wife (of 35 years)? Of course not! Not for a month... One night, as we lay in bed, (I didn't get much sleep during this time) I told her I was so afraid about tomorrow that I couldn't live in today. She said - Me too...

ME TOO?? And I realized that she was living the same nightmare I was. I thought I was alone in the hole I had dug. But I wasn't! This woman, who'd said, "in sickness and in health" those many years ago... She meant it! She was right there with me, when I could only see myself. Together, we decided to live. No, not that evening, but we were together and we would do our best with whatever time we had left together.

Another thing... Had I prayed about it at all? Not a prayer! And I believe in God, too. I just thought it was up to me to find the path out of my dilemma. So I began to pray. Not for healing, but for peace to see us through. And God sent me His peace. Like waves of the ocean coming to shore, washing over me, slowly freeing me from my distress...

And I began to wonder who the other 7 were that would be alive with me in 5 years. And I prayed for all 100 of us.

In the midst of all this, I found a melanoma vaccine trial at John Wayne Cancer Institute, in Santa Monica, CA, that I qualified for, where I was assured I would get the vaccine, not some sugar-water. My oncologist agreed it was a good bet.

I began that trial in late December, 1998. Sure, I had to fly to LA every other week for 3 months. But we found ways to help us do that. And the vaccine caused no discomfort. I would fly in on a Monday, get the shots on Tuesday morning and fly home that afternoon. After a short time, I knew the crew on the flights and they were part of my healing also. (Delta!!)

I'm now 5 years out. One of the 8. No recurrences. I still get scanned at least once a year. I have no thoughts that I am cured. I am sure melanoma is still running around my blood stream. But my immune system seems to be in control of it.

Looking back... Has the vaccine kept the melanoma at bay? Am I better because I went through the vaccine trial? According to the surgeon, the tumor was completely removed in surgery. Subsequent scans of my lungs found no signs of any other tumors. So - did I really get any good from the vaccine? Would I have been this well without it?

I can't answer these questions... I am a statistical sample of 1! There is no control group that I can point to who died, not taking the vaccine.

But I could not stand by and wait for the melanoma to reappear, doing nothing to kill it in the meantime. There are no fair-fighting rules with cancer. Melanoma will not give you chances to recover. It will kill you.

Once I decided to LIVE, doing nothing was not an option I ever thought of taking.

What have I learned?

I needed a support group! I told all our friends and family about my situation. I wasn't looking for pity. I was looking for any assistance they might be able to give me, prayers, Internet, medical advice, tell me and my wife that we looked ok. Help if we ever needed any. These are our angels. And we have lots of them. Melanoma is not something you should hide under a basket. Tell the people that are important to you.
The Internet is FULL of treatment possibilities. It's important that you understand the medical jargon. Then you can begin to understand the treatments that are out there. There are a number of melanoma and NCI sites you should be following frequently. I'll be happy to share what I follow and pick up on what you follow that I am not. (see the end of my story for my E-Mail address)
It's important that you have an oncologist who sees you as a partner in finding and following a course of treatment. This is your life at stake. How you feel and what course of action you think is best for you is most important. If you do not have this kind of oncologist, have a heart-to-heart with him/her, be blunt and make your feelings known. If they cannot work this way - CHANGE ONCOLOGISTS!
Select the program of treatment you feel is best for you and sail forth into it. Do not look back! You gotta believe in your plan.
At the same time, be on the lookout for a "Plan B." What will you do just in case Plan A doesn't work?
I can't say enough about being at peace within yourself. Our bodies are all one huge complicated organism. And all the parts communicate with one another. If one part is under duress, it affects the rest. I really believe my second cancer was caused by me getting stressed out about work for a year, lowering the efficiency of my immune system. Whatever reduces your stress level - running, yoga, tai chi, reading, praying - do it often. I'm not a doctor, but my experience tells me being at peace is critical to healing.
Last... Whatever you believe will happen to you... Probably will. If you believe you will die - you probably will. If you believe - I mean really believe - you will live. You have a good chance of living. This is not pie-in-the-sky believing. It's the hard-nosed belief that you have taken every step you can take and are ready to take others if necessary.

Melanoma is not for the faint of heart. You gotta want to live and do whatever is necessary to live to have a chance. And even that may not be enough...

What good have I gotten from melanoma? What a crazy question! Good - from melanoma?

Every day is a fantastic gift. A day I didn't think I would get. I can get goose-bumps at a sunrise! Seeing my family grow - and seeing grandchildren... I remember the days I never thought I'd see these things. It colors everything about me. I'm a huggy sorta guy by nature. But getting and giving hugs is a gift of immeasurable worth to me now.

No one ever promised me tomorrow... I guess I always knew that - but it didn't mean anything like it means now, with melanoma. All we have is today. If I really believe I have only today, how would I live it?

Thank you for listening. I'm sorry you are also on this road. I wish you peace as you travel it with me.

Aloha,

Larry Loose

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