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

Lack of Knowledge (Why?)

What causes melanoma? Do you know?

I have heard many answers to these couple of questions. "Melanoma is caused by an unsanitary/dirty tanning bed, right"? "It's from them people that spend too much time in the sun" is another gem. Oh, I've also heard, "Oh you know if you go to those tanning salons and not lay out in the sun you protect your skin so when you do go out into the sun your skin is already used to it and you won't get burnt". Nice.

When is the last time you actually went to a dermatologist? Why?

Even more good ones from those questions. "My family doctor doesn't ever tell me I need to do it". "I'm only 29; only teenagers with acne and old people with moles need to go there". "Don't those guy do face lifts and nose jobs"? (I actually heard that at a mall while talking to a young girl at the food court; you could obviously tell she went tanning regularly).

Normally these would be funny. You would see stuff like that on Jay Leno's "Jay-Walking" segment on the Tonight Show.

These are in all reality NOT funny. These ignorant answers are a sign that not enough is being put out to the younger adults and children (most of whom are women) about the dangers of tanning beds and lack of knowledge of skin care (not just putting your Bath & Body Works Lotion on your legs silly).

Why is it that melanoma is the fastest growing cancer among women under the age of 30 IN AMERICA? Not only are we ignorant of the causes of melanoma and the ways of preventing it, but, we also have no idea how to ensure that we aren't "infected" or "inflicted" or whatever you want to call it.

Do you know what the ABCDE's of melanoma are? More than likely you don't (click on the link and it will take you to the Skin Cancer Foundation Website's explanation). They're not something you see on a carton or pack. They're not something you see in the places you go to tan. I have never seen anything on TV or heard anything on the radio concerning them. Again, this is the NUMBER ONE/NUMERO UNO growing CANCER in WOMEN under the age of 30 in the entire USA! Ya think we would hear something...so, before I move on to some juicer stuff, here are the ABCDE's in order:

A - Asymmetrical. Is the mole asymmetrical, meaning perfectly round, or is one side small and the other oblong? In other words, if ya took a pen and drew a line in the middle, would each side look alike? If they don't, GET IT CHECKED OUT ASAP by a Dermatologist!

B- Border. Does the mole have irregular borders? Does it have smooth edges or is it ragged around the outside? If the borders are uneven, it is a good sign to go the the Dermatologist NOW!

C - Color. Has the mole changed colors lately? Is it multicolored? Has it turned blue or black, or is it two shades of brown? If so, you know what to do. DERMATOLOGIST!

D - Diameter. How big is the mole. Is it the size of a pinhead? Is it bigger, like let's say the size of a pencil eraser in circumference? Granted, some melanomas may be smaller when they are first developed, and even some larger, non-melanomic moles may be bigger; but if if the mole is bigger than that pencil eraser tip, and especially if it has some of the other characteristics mentioned in the ABCDE's, I would call my family doc and schedule an appointment with the Derm dude like right now.

E - Evolving. This is a not too much heard of and honestly a newer addition to the group of letters of warning of the beast we call melanoma. If the mole changes; any of the A's, B's, C's, or D's...it is time to be worried. Normally a mole that is a source of melanoma with change (or evolve) in color. It may itch. It may grow in elevation. It may itch. It may bleed. If any of these things happen, get it checked out, please?

Now, I want to share with you another point of view I have been shown by a special friend over these last few weeks. It revolves around something I hear quite often. I assume it is something people say because they are a little uncomfortable around a widow/widower, or they just don't know what to say. What can I say, talking to a widow can be weird to some folks. They will say: "Oh, honey/sweetie/kiddo/Ricky, etc., Everything will be okay. It will be okay. You will be okay. Just give it time". Well, ya know, this good friend of mine who lives near Charlotte, NC, who lost her husband at a young age said it best: "You know what? It will never be okay. Ever. It's not okay that someone we loved with all of our heart is gone from our life this early. It never will be okay. It will just always be different". When you think about those few sentences, most folks would be thinking that they come off as cynical or pessimistic. But think about it. Are you happy Rach is gone? Is it "okay" to you that she is not here with us anymore? Most if not all of you probably answered "no." So, is it different now that she isn't here? Has life changed? You're damn right it is and has. So, it isn't OKAY. It is DIFFERENT. Thank you, Pami.

This long road I have been traveling lately has brought me into contact with some very special people, not just in my family and circle of friends, but also a large group of folks who have gone through what I have; losing a spouse at a young age. I have found a bulletin board by way of a suggestion from a friend through Facebook (thanks, Anna!) called www.ywbb.org. What an awesome group of supporters. This bulletin board is made up of all kinds of people like me. I have been saying consistently that the reason I am able to deal with this entire situation is because of the support I am getting. I am getting support from folks in person and online, and you all kick some serious butt.

Keep reading; next time I will try and pop some more vids and maybe a few songs in here, mixed of course with some scary tanning/melanoma stuff too! God bless you all!

(By the way, please all of you pray for Linda Ramirez and her family. Please click on her name to read her blog. I see her story as something very similar to what Rach went through. This is such a bad disease and it truly takes some very special people away from us. Many of you offered your prayers to Rach while she was very sick, and I ask you to do the same for Linda and her beautiful family. Thanks again for your prayers and support.)

Back Home...Not Exactly by Choice

Japan is now a memory. A very good memory, at least until the very end. We're back home. Things don't seem so abnormal. Besides having a lump in her neck, Rach feels pretty good. It is really hard to understand how she is so sick when she doesn't feel like it. We're now staying at her parent's house in Hubbard, OH. It's a po-dunk town a few thousand folks short of 10 grand. There's probably more bars than traffic lights here. Rach and I grew up here, went to school here, made lifelong friends here, and made many memories here. We both made decisions in life that got us out of that town...years later, here we are, waiting for the unknown.

The day comes for us to meet with the docs up in Cleveland Clinic. We're to meet with an ear, nose, and throat surgeon and oncologist, Dr. Walter Lee. He's a young looking, soft spoken, gentle man who has a relaxing way about him. He calms us as we initiate the myraid of tests Rach will be going through. She starts by getting her throat, esophagus, and stomach looked at with a strange looking tool she had to get placed in her nose and down all the way into her stomach. It looked quite uncomfortable, but as she does commonly, she "troopered" through it. She concurrently went through various scans; PET, C/T, MRI, etc...and her doctors reviewed her case.

By looking at the scans, it was evident that Rachel's cancer had spread throughout her body; the largest mass being in the lower left neck area (the size of a tennis ball), and an assortment of relatively small tumors located throughout her lymph chain in her abdomen. Due to the location of the mass in her neck and the location near major arteries, it was decided to remove the lump via surgery. Rach hadn't had surgery since we were in Virginia. Those surgeries were all on her legs and lower extremities - away from anything vital, whereas this one would be quite dangerous - near many vital areas of her body. It was the first very scary experience we had since this second bout with the beast has come about (besides the lump finding of course).

I waited in the waiting area with Rachel's parents and our Pastor from our Catholic church (St. Pats in Hubbard, OH), Fr. Tim O'Neil. After 4 long hours, Dr. Lee came out and told us the surgery was a success; she made it through fine. That was the good news. We had been told prior to the surgery that this cancer could have been lymphoma - due to the location exclusively in her lymph system. That would have been a much better diagnosis. Dr. Lee broke it down for us, and the news was quite sombering. The mass came back as being positive for melanoma. That meant she was diagnosed with Stage IV, distant metastisized, malignant melanoma (a1c). Needless to say, we all shared a good cry.

The thing that kept us strong in that time of excrutiating emotional anguish was the fact that Fr. Tim was there to comfort us and Rachel's surgeon, Dr. Lee, said something so simple yet so powerful to all of us. He said: "Those who make it through tough times such as these do so because they rely on the 3 F's: Faith, Family, and Friends". That philosiphy of his had held true throughout our entire ordeal.

After a few week of recovery and ensuring the area of her surgery was healing properly, Dr. Lee recommended we be seen by the Melanoma Specialists at The University of Pittsburgh Medical Center's Hillman Cancer Center. Her lead oncologist would be Dr. Ahmad Tarhini, another soft spoken, kind man who has a way of putting us at ease. With my next entry I will bring the story up through the current time and will continue to update this blog with frequent storied of our experiences while Rachel fights her battle with the hardest foe she (or any of us for that matter) have faced.

• If you must be in the sun, exercise "sun sense." Avoid sun exposure between 10 a.m. and 3 p.m., when ultraviolet (UV) exposure is greatest, and use a sunscreen with a sun protection factor (SPF) no less than 15.

• If you must be in bright sun, sunscreen alone may not provide adequate protection: Keep exposed areas of your body covered. In addition to protecting your arms, legs, and trunk, remember your head, neck, and shoulders. Wear a visor or a hat with a brim. Melanoma usually occurs on the head and neck, on men’s trunks, and on women’s legs. Do not ignore changes in moles in areas of the body that are not exposed to sun. Melanoma can occur in these areas as well.

• Examine your skin regularly, and have your health professional check your skin during any other health exams, or at least once a year.