Change is Good!

Hello to all of our amazing family and friends! As you can see, there are some small changes I have made to Rach's Blog. I believe these changes are vital in order to accomplish a few things:
- The need to shift the focus to a more informational and inspirational theme vice a sad and heartbreaking theme.
- The need to make this more about her and how her story can save the lives of others by educating them.
- The ability for those using Google and other search engines to find her blog, enabling us to help others.

I really wanted to take any of the focus off of me, the author and her husband before she lost her battle to melanoma, and place it on where it needs to be - on her. I encourage those of you who have just found this blog to read it from the beginning (Nov/Dec 2009) and read it the entire way through to the end. I promise you, you will get something out of it. For those of you who are familiar with this blog, take the time to revisit some of the entries. I do from time to time; it provides me with inspiration and strength!

This past January, we passed three years since Rachel lost her battle with malignant melanoma. For some of us, it is still fresh in our minds and hearts. In the three years since her death, there have been some extremely important happenings in the areas applicable to malignant melanoma, tanning regulation, and cancer research. I will mention a few of these below.

Melanoma Treatment 2011 - A year of Milestones

Key Melanoma Issues

State & National Melanoma Issues

Some "educational" videos for you and those you love. Please pass it on! Oh, and check out a few of my blogs I follow on the left - these are written by folks who have been in the same fight we have. The videos:





I hope you enjoy the changes and the new attitude "Team Rachel" will be bringing to the fight against melanoma! I will soon start adding information for this year's American Cancer Society's "Relay for Life" - Team Rachel to be held in mid-May! God bless!

~Rich

The Tribute is in the Numbers

As I said before in my last entry, the support for Rach, her family, and I has been overwhelmingly amazing. Just to show you some of the numbers of people who have paid their respects to her, this is what I've been told so far:

- Over 2,000 hits on her obituary online at www.stewart-kyle.com
- Over 750 attendees at her calling hours (and many people had to wither leave due to the cold weather)
- Over 750 attendees at her funeral at St. Patrick's Catholic church in Hubbard, OH.
- Friends and family arrived from either right next door or from thousands of miles away.

These are just a few of the numerical tidbits that give me strength each day.

I want to tell you that I believe that Rachel should have a legacy, due to the amazing young woman she was. It was easy for her to impact many of us, whether we knew her or not. Now it is our turn to get the word out to the world as best we can. I need each of you to be an advocate for melanoma research and education. I went into a tanning salon today in Boardman, Ohio, just to see if there were any types of warnings about the dangers of the UVB rays that are emitted by the tanning beds. I looked for signs and for words in the enrollment packages. There was nothing. Sure, there were warnings about overexposure leading to burns, but nothing about how those UVB rays burn deeper due to their wavelength or that the overuse of tanning beds may lead to melanoma.

I think the world has to learn about her fight. The world needs to understand the dangers of tanning and how they can avoid melanoma even if they do go tanning. I would love to get a worldwide forum, like the Oprah Show or Good Morning America to tell her story and those stories of all of the victims (and survivors) or the horrible disease that is known as melanoma. Continue passing on information to your friends and families regarding these threats. I will be posting some links and videos in a few days showing other peoples' struggles as well as educational and informative sites.

Rachel impacted everyone she ever met. Let us ensure she has a much farther reaching impact. God Bless; make sure you are looking over each others' skin!

I Love you Rachel!

It's Getting Harder, for All of Us

In the past week things have changed with Rach. Things that are worrying me. She has acquired a chest cold from someone and is having some trouble breathing from it. That cough and wheezing associated with it are making her nervous and in turn me as well. She has lost all of the strength in her legs to be able to hold up her frame to move even short distances; she fell when we were trying to move her from her laz-e-boy to her wheelchair yesterday, and luckily I was holding her and was strong enough to let her down softy so she didn't hurt anything. She is losing the ability to control her urination and bowels, and that presents her with not only a physical uncomfortableness that we must constantly help her with by changing undergarments and cleaning her (which requires her to stand up which as I said earlier is becoming increasingly difficult), but with an embarrassing emotional uncomfortableness that is the result of knowing that she messed herself.

We have initiated working with Hospice. We are working with Southern Care, who employs some amazing folks who have made this emotional transition in our lives a little more bearable. She'll have a nurse dedicated to her care (medications and medical care), a social worker available to answer questions for her and us and provide emotional support, a personal care assistant who will come and do things to make her comfortable, a companion to keep her company if and when all of us in the household have to leave to take care of things outside of the home, and a chaplain who can provide us with spiritual support during this difficult time.

As time goes on, it appears that this beast is having its way with my girl. Watching her go through this is harder and more painful than anything I have ever experienced before. I'm not sure how much longer she will be able to fight this, as weak and exhausted as she is. I cry even more now than I ever have, sometimes uncontrollably, especially at night. The thoughts and stresses and regrets that come along with seeing someone you love going through something like this are unexplainable.

I look into the future (even though I shouldn't) and see a lot of confusion and emptiness if she is not with me. Right now I need all of your prayers for her strength as well as mine and her family's; I need your prayers for her comfort and ability to relax and feel better no matter how that will happen; I need your prayers that no matter what God has in store for us we are able to deal with it. I keep telling myself that in the Lord's prayer, we are told: "Thy will be done". I keep reminding myself of that fact. I have no control here, and I know that is the case. All I can do is be here for her and do the best I can to keep her comfortable.

• For those of you who feel the need to go to the tanning salon, especially now during the winter since you can't "lay out" in order to get a tan, please consider getting a much safer spray-on tan or go buy some tanning cream or spray your friends or significant other can apply to you to give you that tan. Think of how much safer it is, please!
• I can't stress enough to each and every one of you how important it is to check yourself and have your friends or partners check your body and skin for moles that appear discolored or misshapen. Many of you have been taught to check your breasts or testicles for lumps or abnormalities in order to fend off cancer in them. Well, your skin needs to be checked just as robustly as anything else. You can get melanoma in the weirdest places, like in the creases of your labia, or in the crack of your butt, or in an armpit, or even under hair follicles on your head.

Bottom line, don't let yourself be affected by melanoma the way we have. Head it off before it gets a chance to mess up your life and the lives of your loved ones.

The Beast is Awakened

On a warm, late summer day in 2003, Rachel and I were hanging out with friends in the back yard, sitting around the pool and conversing. The conversation somehow turned to moles and other anomalies on our bodies. Rachel noted a mole that had started to turn darker than normal on her left thigh. The mole had been present on her body since at least her high school days, as was proven by looking at old pictures after the fact. One of Rachel's friends, a surgical tech at the time, said she should get it looked at by the dermatologist soon. We made note of it, and scheduled an appointment within a couple of weeks of that day in the back yard.

So, the day comes where she goes to get checked out by the dermatologist. Let it be noted that Rachel is by nature a fair skinned Caucasian woman; her normal skin tone is quite light. She has a multitude of freckles and moles scattered over the majority of her body. The mole on her thigh worried the dermatologist, so they did a "punch biopsy" on it. It was comparatively large, with a radius of 7mm. It was sent off to the lab while we waited for the results.

We were nervously anticipating the response from the dermatologist, when we got the call that put this roller coaster ride in motion. We were told that the biopsy results from the mole on Rachel's thigh had come back positive for malignant melanoma. Needless to say we were upset by the news. We really didn't know how to react at the time; neither of us were prepared for the news of one of us would be diagnosed with cancer (any kind of cancer!) at age 25! We had a good cry and after that bucked up and decided we would fight this beast no matter what it threw at us. At this point she was at least a stage 1...

A week or so later, she was scheduled for the wide incision where they remove all cancerous tissue from the original area of the malignancy. It was her first surgery. It was low risk; however, once it was complete, she would have to have a JP tube inserted to drain fluid from the wound area, and she would be admitted for a few days. Unfortunately, shortly thereafter, she would have to go through a sentinel lymph node biopsy, which required another surgery, a minor one to remove it and check for melanoma "mets" or metastasized melanoma cells in the first lymph node that pulls toxins from the area of the original malignancy. The results come back as malignant; the melanoma had metastasized to her sentinel lymph node. Stage 2, check.

Because of the malignancy in the sentinel node, she had to have a regional lymphandectomy in her left groin to see the extent of the spread of the melanoma. Already feeling beat down, we buckled down and she went through her third surgery. Being the trooper she is, she made it through well, and the news, while upsetting, was not as bad as it could have been. The bad news: There was melanoma present in some of the regional lymph nodes...she is stage 3. The good news: The amount found was quite small; just a tad bit higher than microscopic amounts were found. She would have to be put on Interferon treatments.

Not even three weeks into the initial Interferon treatment regimen, Rachel's labs showed severe increases in her liver enzymes. Due to the minimal amount of melanoma found in the regional lymphandectomy, and the fact that this interferon was damaging her liver so badly, the oncologists suggested we stop the treatment.

Was it the right decision? Should we have pressed the issue? Looking back in retrospect, I almost regret not pursuing things a little further. Of course, at that time, I agreed with the doctors and figured all would turn out well. We finished out my tour of duty in Norfolk, and I got orders to go to Yokosuka, Japan in 2005. Despite her medical history, she was cleared to make this 3 year tour with me. Things went great for almost the entire time we were overseas...more to come on that in my next post.

Tanning beds produce more than 3 times the amount of UVA rays, affecting deeper tissue and more apt to cause long term skin damage, than the sun. Long term effects of exposure to these UVA rays is linked to malignant melanoma, damage to the immune system, weakening and loss of elasticity of the skin's inner tissue. If you go tanning, you double your chances of developing skin cancer. Tanning is the body's response to injury caused by exposure to the skin, and can cause age spots, crow's feet, and most of all, wrinkles.