Tuesday, October 30, 2012

Dear Folks Who Do Not Have Melanoma

That includes family and friends, co-workers, and people who meet me on the street.

I know you don't understand. How could you, though, because this word, "melanoma" hasn't been attached to you personally. I didn't understand before it was attached to me, either.

Our families, spouses, children, parents, siblings have their own fears for us and for themselves. But, even their insides are different from ours. And, to be fair, our insides don't look like theirs either. I cannot begin to tell you what living with our diagnosis is like for them. Let me tell you what it's like for me.

On the outside, the part you see, I look fine. I smile. I laugh. I work. I go about my life. No pity party here. I'm blessed and I know it and I'm grateful for each day.

Usually my insides and my mind, look pretty good, too. And even when they don't, I will usually not let you see it. Just don't you think I'm fine or tell me I'm fine. If I want to say it, those words are mine to say. They aren't yours to say for me or about me.

See, my melanoma was, hopefully and theoretically, cut out. My outer, superficial scars are healing. But we don't call melanoma "the beast" for nothing. It has more than earned that name and I know what I'm living with. And then again, I don't.

I know this disease. It has no MO. It just doesn't. I can be stage 1 today and stage 4 in a few months. Me, personally, as I write, I'm stage 3b and NED (no evidence of disease) for four years now. If this comes back, it will be stage 4. Brain or lungs according to my melanoma specialist surgical oncologist; there's a slight possibility it could come back as another primary on my body surface. I won't know until I know. Even then, I may not "know" until scans reveal something growing I had no idea was there.

I can already be harboring growing tumors somewhere and have NO IDEA! Right now I have no symptoms, but that doesn't mean I have no tumors. Lovely, huh? Those are thoughts we all have once melanoma is attached to us. We aren't always as "fine" as we look.

At least, I'm not. So please don't think I'm fine. My body either is or it isn't and I don't truly know. My mind can get the best of me at times and play games with me. And every time I get a new lump, bump, change in ANYTHING, or new symptom of any kind, my mind automatically jumps to "has melanoma returned?"

I know what I live with and because I live with it, I've educated myself about it. Trust me, I know right much. So when I try to tell you to stay away from tanning beds, to practice safe sun, to stay vigilant about your skin and moles and get all changes checked, and when I try to tell you that melanoma isn't just skin cancer...it is much more and doesn't need superficial skin to begin in, please listen. I don't want my story to become your story. And if you're related to me, really listen up because you now have melanoma in your family tree. I'm third generation melanoma.

If you cannot listen, at least, please don't flaunt your melanoma-seducing ways in my face. You don't know how much it hurts to see your unnaturally tanned self and read of your tanning and know you're courting disaster. I've been there, courted disaster and didn't even realize it, disaster won, and that's not a good place to be. Today we know what behaviors court melanoma. WE KNOW!!!! Many melanoma diagnoses don't have to happen if people would listen and heed what we now know! Not ALL melanoma is preventable, but much is. Many cases are treatable; none are curable.

Not mine and not yours if you get it. Not now, at least. So, it hasn't been "cut out and now I'm good to go". This, in all probability, if it has its way, will kill me and it will be a brutal death. It could kick in before this year is out or it can lie dormant and kick in twenty years from now. I won't know what it will do until it does it. I know what I'm up against and it's not pretty but it is what it is. I'm not as fine as you may think I am.

But I am grateful to be here and be part of a melanoma community that's doing everything it can to keep our numbers from growing. Many will join us because damage has already been done. Others will join for unknown reasons because there's still much to learn about this disease. But there are many who can avoid joining us, maybe you, if folks without melanoma will just pay attention to us.

Listen now and maybe you won't ever have people telling you that you're "fine" and you "look good" and "What's the big deal? They cut it out so get on with life." Maybe you won't ever have to learn about this disease the hard, up close and personal way. Maybe you won't ever have to pick who you talk to about this to avoid people saying things that are hurtful and ignorant.

Sigh.

So, folks who don't have melanoma, let me leave you with these parting thoughts: I've learned much I never thought I'd learn...stuff I didn't know existed. And while I'm not "fine" with what I've learned, and while I'm not always as "fine" as I look, I am one of the most grateful people you'll ever meet. I'm in a community of the most beautiful people on the face of this earth because of melanoma. And God has used this disease in ways I never could have imagined that day that I heard, over voice mail, that I had melanoma. I have seen God work wonders, do miracles, pour blessings and open my eyes and heart in ways, in my life and in the lives of others, that I would never have seen without the beast ripping into my life. I stand amazed and in awe every day. Of God's hands at work, at the people He has brought into my life, at what I see being done in the field of melanoma research, at how He's bringing the melanoma community together from around the world. I stand amazed and in awe that I am part of this. Physically I have no idea if I really am "fine." I have my days when emotionally I am far from fine. Spiritually, I soar.

And I am grateful.

Sunday, October 21, 2012

Going To The Dermatologist And Melanoma



OK, let me spell some stuff out and do it like this so it's easily shareable. There are things about melanoma and dermatology appointments people need to know. (I will be frank and assume we all know our body parts. I have learned thru the years that some things need to be spelled out or some people will not get it). First and foremost, remember we don't call melanoma "the beast" for nothing. It has EARNED that name. This is for everybody, regardless of skin color, age, or gender. Melanoma is an equal opportunity cancer and, as you will see if you don't already know, it is NOT "just" skin cancer!

1. Melanoma does not have a "THIS IS IT" look. People tend to think in terms of "moles" or places on the surface of the skin and there are many preconceived ideas about what melanoma looks like. It can be a nodule under the skin. It can be a pink spot on the surface. It can be a very small black dot. While it does have a "common" look that dermatologists look for...we know the "ABCDE's"...that does not always hold. When in doubt, check it out.

2. Maybe cut it out. Do NOT let anybody tell you to "let's watch it and see what it does." While they are watching, if it's melanoma, it is growing and happily so. This is your body, your suspicion, and if it's melanoma it's your fight, your life, and it may just be your death, too. If you want a place removed and pathed, get it removed and pathed. Let the pathology report prove if it was something or not. If your dr will not cooperate, go somewhere else. It's that simple. You will have to be your own best advocate. Open your mouth if you have to.

3. Melanoma does NOT always begin on the body surface or on skin or in moles or where the sun shines. It can begin in the eye, the ear canal, the mouth, the rectum, the vagina. It can begin under any nail bed, toe or finger; it can begin on the palm or sole or between toes or fingers. There are many people who have melanoma, but no known primary and when it's found it's already in an internal organ.

4. Make sure you have a dermatologist or GP who is knowledgeable and will do a FULL BODY check. If you don't know if they will, ask. Full body means full body (read point 3). If he or she doesn't do full body, get another dr who will.

5. If you're uncomfortable with your doc doing that if you are different genders or for whatever reason, find a doctor you ARE comfortable doing that. Because, that's the dr you need if you want one who will take melanoma seriously. If your doc will not do a full body, that's not the doc you need if melanoma is a concern (and it should be a concern considering how fast it's growing!)

6. One way, and I think the best way, to find a dermatologist who is a melanoma/skin cancer specialist is to call the nearest facility/hospital that has melanoma specialist oncologists. That facility should have a topnotch dermatology department that has melanoma specialists..and several to choose from in case you want a particular gender. They will also know of those in private practice that are topnotch when it comes to being proactive against melanoma and skin cancer.

7. I travel over two hours to my female dermatologist who is a melanoma specialist at Duke and she is worth the travel.

8. Be proactive yourself. Know your body, in and out. Get anything that is of concern checked out. The life you save may be your own.

charis

Tuesday, October 16, 2012

One Month, PEOPLE, And We Turn Charlotte Black!

And do some serious multitasking!

One month, from today, November 16th, many of us from the melanoma community, myself included, will begin descending on Charlotte, NC for our Saturday November 17th Aim at Melanoma Walk.

Before we ever start Walking, we'll be flying or driving in from around the country. We'll be registering at our hotel and hugging other early birds. We'll be meeting and greeting. We'll be making plans for supper and sharing with each other face-to-face. We'll be putting voices and squeezes with names. We'll continue the bonding we began online and take that bonding deeper than we ever imagined when we first became "friends" on Facebook.

Saturday we'll continue multitasking as we try to walk, raise funds, and keep hugging people we haven't met yet. There will be tears and laughter. A lot of talking! We may take turns pushing our friends around the track if they need a wheelchair to participate. After the event we'll still be a group that goes golfing or other activities...maybe napping getting ready for

Saturday Night! After Party Time!

More laughing, talking, singing, bonding, not letting go of those we're finally getting a hold of.

And then comes Sunday and many will head for home, myself included. But we won't be the same people we were when we first arrived in Charlotte. And when we log back onto Facebook, our changed relationships will show as our conversations go to a whole new level.

We won't be just Facebook friends anymore with miles and computers between us. We'll be friends who have spoken, touched, hugged, laughed with, leaned on, cried with, each other. We'll see each other as we really are and not just what we have pictured in our minds' eye. We'll be surprised because we'll all be different than others thought we were. We'll look different, sound different than what people thought. And that's OK.

We are people who will have achieved a goal and we are a group who will have turned Charlotte black.

We will have arrived as "family" and we will leave as FAMILY. In each others' hearts, minds, lives, and prayers in ways we weren't before actually meeting.

Hugging somebody changes the relationship. It just does.

It's not to late to make plans to join us and here's the link to the Walk page.

I look forward to hugging each and every person there.

Charis

Sunday, October 14, 2012

Back In Time To 2008: Surgeries, No Interferon, Fashion

I've never written, in depth, about what it was like and why I made the choices I made. So the following is what happened to me. Take it for what it is if you're interested. I can't change the history, even if I wanted to, so this isn't offered for any bickering over what the better choices are. We are all faced with decisions and we have to pick what we think will be the best for us, we can't go back and change our minds. We don't get do-overs. I've covered getting my melanoma diagnosis. I've made allusions to some stuff and skimmed the surface of other stuff. This blog site is searchable for folks who want to know more. And who could blame them? Mighty interesting stuff if you ask me!

In July 2008, after my diagnosis, I met with one of the melanoma specialist oncologists and a mel spec surgical onc, at Duke. I had the routine scans. Including going nuclear with a PET/CT scan to see what we were dealing with. I was still 48 (and this runs into August) and in the middle of menopause. I was "looking forward" to much more. In order to go nuclear I had to sign a release stating that I understood I could die during the test. So I signed, two lymph nodes lit up the screen, and I've never had another symptom of menopause. I didn't die, but one body system, which was functioning before the test, stopped functioning after it. Now, I realize there are women who might think "no more menopause" is a good thing. Not when it happens this way. It's scary. And for me, it played into other decisions yet to come.

There were a couple other notable tests and procedures during this same time frame, but they all went "normally"...as "normal" as shooting dye THREE times in a really, really tight, down to the bone, scar can be. There's no word in the English language (or in my vocabulary) that describes that. All these tests worked together to confirm my melanoma was, indeed, in two lymph nodes. I have been told by lay people that usually these tests do not confirm to the degree mine did. But mine did. My surgeon knew it was definitely in those two nodes. Side note: It wasn't until I recently read my online reports that I learned I lit up two nodes! All this time I thought it had been one. What a misunderstanding! Word to the wise: read your reports yourself!

So, I go in for surgery, and the first two nodes are removed from under my left arm. A drainage system is there when I wake up (thin tubing running from the opening into a collection test tube taped between my breasts).

Something nobody told me pre-op: I'd never wear a bra again and while I healed I would need men's X-Large shirts to accommodate the drainage and lack of bra. Shirts made of dark colors and thick material. I did learn, during this whole time, not to judge how people dress because we never know what they're dressing to accommodate. And, yes, I did wear my new wardrobe into the pulpit. I had to. Folks understood and loved me anyway and loved me through it. I am equally sure that I passed people on the street who would have given me a ticket if they had been fashion police. I think there needs to be clothing for people who do have to work, get out in public, and work around drainage systems of all kinds and in various places on the body. Four years later I wear a camisole with built-in sports bra. My scar is still sensitive and bras are deviously cut to rub it. Manufacturers are in a conspiracy.

Because those two nodes were definitely melanoma positive, my surgeon went back in and removed the remaining 25 nodes and I woke up with a larger drainage system. Pathology confirmed those nodes were all clear.

My waking and hospital discharge all went smoothly the first time. My second go-round was a different story. One, it took me longer to wake up and when I did start to come to, I could tell the attending nurses were relieved. So they wheel my bed into another section of post-op and after a while a nurse tries to get me up. I had JUST had a huge hunk of material removed from under my LEFT arm (they don't sort nodes out, they go in and scoop out all of what's there when they go back for all the nodes), had staples and bigger drainage in under that arm, and the nurse stands at my left side, reaches OVER, grabs me by my right side and rolls me towards her! She was stunned when I started crying and told her she was hurting me. She was absolutely shocked. Really. And immediately told another nurse that I wasn't ready to be discharged because she couldn't get me out of bed.

HELLLLLOOOOOO! So I was moved upstairs to step-up recovery for the night. Which was just as well because during the night my oxygen level dropped and I needed some O2 for a while. And, due to the previously mentioned rough-handling, I was in pain that had to be managed. I'm someone with a high level of pain tolerance and I don't like taking strong stuff, but this time the pain was pretty intense and I needed heavy duty help.

During the time of healing, I saw the oncologist and we discussed my one and only option in 2008. Interferon. Well, we didn't so much "discuss" it as much as she told me "we" could do it, what it would entail, and I went home to research it and to pray about it. She didn't try to talk me into doing it or talk me out of it. It was totally up to me.

So I read everything from every medical, reputable source I could find. The side effects scared me silly. I'm the type of person who can't take aspirin without side effects. EVERYTHING that most people laugh at, makes me sleepy, or nauseated, or dizzy, or any two, or all three. I knew I'd have the worse side effects possible because that's my own history. Possible liver damage really scared me. This Interferon was offered as something that might keep future recurrences from happening. There were no guarantees. I didn't have active disease at this time because it had been removed with my lymph nodes. Should a recurrence occur, I figured I would need a fully functioning liver.

Something else that I had to take into consideration was what that PET/CT scan did. It shut down a functioning system in my body. I don't have but so many body systems and I'm pretty sure I need the rest of them. If going nuclear did THAT, what would Interferon do?

I opted not to do the Interferon.

When I met with the oncologist and gave her my decision, the PA that was in there literally clapped and cheered. The oncologist beamed broadly. I later learned from my surgeon that they don't like Interferon and don't push it. They do have to offer it as an option and will certainly administer it if a patient wants it, but they do not push anyone to do it.

I'm aware that many people in melaland consider my approach to be "watch and wait." Not for me. I know my body, what I can handle and what I can't. I've chosen to manage mine, should I ever experience a recurrence, with surgery as long as I can. If I ever need to examine one of the new drug options, I will. I'm in a good place. No Interferon was the right choice. For me. All treatments are personal decisions and none are made easily. Nothing comes with a money back guarantee unfortunately.

Also, as far as "watch and wait," well, that's what we all do, no matter how many drug treatments are tried. We watch our bodies and wait and pray that there's no more melanoma.

From what I've learned, some patients in some facilities...or particular doctors, are told to do Interferon or other treatments. Know yourself. Research your options using reputable sources. Know what you are comfortable with and what you aren't comfortable with. Remember: this is YOUR choice, YOUR life, YOUR battle, and maybe YOUR death. YOU call the shots. I don't care how your doctor presents it. You do not HAVE to do anything. You CAN say "No." You CAN say, "What are my options? Are there any trials I qualify for?" You can ask all the questions you want. You can say, "YES!" to what YOU decide to try. Just let it be your decision.

So, that's why I opted to not to Interferon. This, very briefly, was what my surgeries were like. This explains my wardrobe for the past four years.

But, HEY! I'm here!

And I am extremely grateful!

Monday, October 1, 2012

"The history of breast cancer advocacy" And What It can Mean To The Melanoma Community

October, aka Pinktober, is Breast Cancer Awareness Month. It seems to now run all year long as it's not unusual to walk into any store, anytime, that sells anything, and see various products that are pink. The consumer may, or may not be, informed how buying a particular item will help with breast cancer research or awareness...and that is becoming an issue within Pink Nation.

I have nothing against Pink. Close relatives of mine either have fought, or are currently fighting, their own battles. Once a person becomes a citizen of Cancer World, we are united. We share a common bond and we share journeys and walks. Our paths are very similar in many ways.

But Pink outpaces all other cancers in funding and awareness. Those of us in other cancer communities turn green with envy. How did Pink get in such an enviable position? I think most people are, at least, somewhat familiar with the history of the Susan G. Komen Foundation. But what about the history of breast cancer funding and research? How did it get to center stage?

I looked it up and this is what is found in an article about that from National Center for Biotechnology Information (This is copied/pasted. As a matter of fact, it is the entire abstract):

The history of breast cancer advocacy.
Abstract
"There have been four key steps in the advent of breast cancer advocacy: priming the market, engaging consumers, establishing political advocacy, and taking the advocacy mainstream. Breast cancer was surrounded by secrecy until the 1980s, when brave individuals such as former First Ladies Betty Ford and Nancy Reagan, and founder of the Susan G. Komen Foundation, Nancy Brinker (Susan Komen's sister), began speaking publicly about the personal impact of the disease, which increased awareness of breast cancer and made it more acceptable to talk about it openly. At the same time, statistics about breast cancer were presented in new ways that the public could understand. Public health advocates played a key role in the second step, engaging consumers, when they established guidelines in the 1980s that encouraged women to perform breast self-examinations (BSEs) and have screening mammograms and clinical breast examinations (CBEs). Other events that helped engage consumers were increased media coverage of breast cancer issues, the founding of the Komen Race for the Cure in 1983, and the establishment of other programs that both educated the public and raised funds. Funds from these efforts enabled advocates to hold educational forums and produce educational materials in different media and tailored to different audiences and to become active in the funding of research. The third step, political action, became possible when breast cancer advocates joined together in the 1980s and 1990s to work toward legislative, regulatory, and funding changes, such as passage of the Mammography Quality Standards Act and increased funding for the National Cancer Institute. These efforts contributed to a more than quadrupling of federal funding for breast cancer research in the 1990s. Going mainstream, the final step in the advocacy process, entailed establishing a solid base of support to ensure that the message about breast cancer stays strong and fresh. This has been achieved by engaging the business, government, and scientific communities as partners in advocacy."


To borrow the image from Black Is The New Pink, we need to be aware that Black really is fast becoming the "new pink" and will, in fact, replace lung cancer as the most common cancer within ten short years. (Note: lung cancer is actually the most diagnosed cancer). Melanoma is already the most common cancer of young adults (that includes women) and the second most common of young people ages 15-29. This highlights breast cancer awareness effectiveness though. It's not the number one cancer, lung is, but I bet most people don't know that. THAT'S how effective their campaign is!  This also demonstrates how they have grown to overshadow the cancer that is now on the fast track of replacing lung, AND, is the the deadliest cancer among young adult women. Again, that cancer is melanoma. Also noteworthy, "Women aged 39 and under have a higher probability of developing melanoma than any other cancer except breast cancer". 

Can I stress that we need to be in this together?

It took breast cancer time to climb the mountain of recognition and it has climbed it well.  My hat is off to them and I wish it wasn't. This isn't some sort of "race to the top," or competition, and no one, with any kind of cancer wants to have to think in terms of their numbers growing.

We, in the melanoma community, look at Pink and wring our hands and wonder how we can get a slice of the pie. It took them time and there was a strategy, which is spelled out above in that abstract.

We can learn from them. And we are. We've got an active and growing grassroots movement. Stand Up 2 Cancer has a Melanoma Dream Team. MD Anderson has a Melanoma Moon Shot. HBO has a show, The Big C, whose main character has melanoma. A few celebrities are starting to make melanoma PSAs. Former NFL coach, Bill Cowher, has started advocating about melanoma since his wife died from it. There are others. We've begun attacking melanoma through anti-tanning bed legislation around the world. Stories are getting told and faces are being seen.

One day, Black WILL be formally recognized as the new pink. I know what that means. It's not all good because it means more people really will be intimately acquainted with the beast. But it will also mean we're a household word and maybe people will start supporting research more and start being more proactive when it comes to taking care of the skin they're in and learn that melanoma is much, much more than "just skin cancer" and you can't cut it out and be done with it.

One day all cancer advocacy will be history because, one day, all cancer will be history. At least that's the stated objective and the plan. It is the point of many, many prayers.

Until that day, we need breast cancer awareness for women AND men, we need research dollars going their way, and we need to support their efforts and learn from them.

We also need to not focus solely on breast cancer at the expense of all other cancers. ALL cancers matter to people and ALL cancers affect us all. ALL cancers have the potential to kill and devastate families. ALL cancers have their statistics and those stats are real people.

So, honor breast cancer awareness month and check your breasts. Get suspicious masses checked out. Keep up that practice when October is over.

But do the same for the entire surface of your body, too. And stay aware of inner changes.

Cancer doesn't honor any month; it could care less about YOU, and we ALL need to support any effort we can to wipe it out and raise awareness. Perhaps the biggest message we need to get through to people is:

Cancer...it can happen to YOU!

Catch it while it's treatable and you stand a fighting chance. Leave it alone and it will happily grow and possibly kill you.

An ignored cancer is a happy, thriving cancer.

Let's rename it "Can'tcer" and wipe it out.

We'll all be grateful when that glorious day gets here!

Do YOUR part!

charis