All we hear is Radio GaGa

The title means what, you ask? It's only there as part of my obsession with Queen of late. But why I'm really here is to catch you up with this info:

1. Check out the new blogs listed to the right-- I've gotten a few emails in the last month informing me of blogs dealing with melanoma and I'm happy to pass on the word (including one at the Ulman Cancer Fund by our own Redheaded Bald Chick!) If you find any others you'd like to promote, be sure to send them my way and I will add them to the roll doggettes.

2. I also heard from Andrea at Paula's Choice and she was gracious enough to write and offer all of us a sneak peek at Beautypedia.com! All you have to do is go to the site, click on subscribe, and enter “blogfree” as the coupon code. No credit card required! You get 2 free days to search over 40,000 cosmetic reviews and browse around the site. Yay! They are also starting a blog at Paula's Choice and are asking readers to advise as to what they believe it should include. Feel free to comment here. They also have a Facebook page is you want to reach them there. A special thanks to Paula Begoun and Andrea.

3. And it's about f%@#ing time, but finally there is a major movement to raise funds for cancer research. If you've been unda dat rock, let me just tell you a little about Stand Up to Cancer, which even has a catchy little acronym, SU2C, as all good causes should. Actually, just watch this, because they say it better than I can:



If our government didn't have their heads up their a&&es, then this wouldn't really be necessarily, but nonetheless people have decided not to sit around and wait for things to get better, and rather have made the decision to do something about it. Good for them! Gandhi would be so proud.

It's not too late to give or to pass on the message! SU2C.org

4. This is completely uncancer related, but do you know about Shock Of Pleasure? Bobby's long-time friend started the group, and they've really taken off here in Dallas. We went to a show the other night and I asked Kelly, the beautiful lead singer, to sign my boob. Of course, she said "Yes!" and that I was the first boob she's ever signed. Wow! I deflowered her. Anyway, check out their stuff on iTunes. I'm not typically an electronic music lover, but this stuff is way cool. Great for those chilled evenings.


5. John McCain's melanoma is in the news a bit, too.

6. There's also some potentially good biomedical news about melanoma treatment.

Keep in touch, peoples.
-MM

A clear conscious is just the sign of a bad memory.

Thank you, JayBee, for the sweet reminder to update.

I've been a bit thoughtful today and lately, thinking of work and if I want to keep the job I have, thinking about being blessed and about mere survival and about the past. And I have been thinking of the words of a very dear friend of mine (who is also a cancer survivor) that once said that melanoma is a scary thing but that we can find hope where dreams remain and where cancer cannot go.

And that's kinda what these last few weeks have been about- about looking around and seeing myself again, that inner resolve that I thought I'd never lose that just went into hiding for a bit, I guess. And the part of me that loved and allowed love in. I guess I thought I'd lost it, that the bitterness had completely replaced it. But it too just needed dusting off. About being open and vulnerable even in the midst of being scared to death that your vulnerability will come back to bite you. About the people that were there when I was so distant, knowing even then that all they wanted to do was help.

I've been reminded this week of who I really am and how I had lost some of myself with every diagnosis and treatment, and in the year of recovery after. Before that diagnosis in May of 2005, I would've said that there was nothing that could make me forget or compromise who I was. But knowing what I know now, I would say that illness can deplete you so that it is nearly impossible to not lose that. Would it be different if I had a recurrence now? God, I hope so. I hope that I have learned enough to know what to hold onto now and what the important things are. Even if not, I have learned the beauty of stillness and what it means to me. That I don't have to be afraid of it or be afraid to NOT be busy. I have learned what the pieces of myself are that will never change- my love for my dad and how I feel about my friends, how kids keep me grounded and that I love the way words can be strung together in a manner so amazing they can change the way a person feels. With all these realizations and all the questions, I can finally say that I have definitely found myself again, waiting in a place I never would've thought to look before. While I was busy trying to survive, I had wandered away. Everything was changing, and I couldn't figure out if I was even the same.

And while I was waiting to be found again, I was given a gift. It was the gift of support from people who helped carry me along, people who had once been where I now found myself. And I promised myself that if I made it through, that I would do the same for someone else- that I would do even more for them than was done for me, which was a lot. Believe it or not, the time has come, and I feel very graced by the opportunity. Because when you've been through it, you never want another person to do it alone for one tiny second.

And thus is life. I crave that time of year when I worry about nothing and instead roll thoughts and ideas around, but those days are still a few weeks away. For now, I have to make the best of what is chaotic and hectic- plans that were supposed to come through for the new warehouse are dragging along and I have been working harder than a sniffer dog in Amsterdam. Not to mention the buzz of regular life. I'm looking forward to vacation. Reading a book for Pete's sake. Taking a walk. Sleeping late and having a long lunch. I miss it. But I am also finding a really good feeling about all this limbo I've been in and just kind of enjoying these weird in-between stages. After all, when they're gone, they're gone, and then I'll be looking back saying, "I wish I just would've relaxed and enjoyed that time for what it was."

-MM

Slow down to speed up

I really want this to be an uplifting, positive post. I really do. I've been reading another cancer survivor's blog and I have been so apsolutely amazed by the support she is receiving from the circle of friends that surround her. She writes about what a blessing they are to her, and I can feel the love beaming from the page. I feel loved just reading it, having experienced that kind of love from my friends. I bask in that feeling, because it is so amazing to have the opportunity to see what the people who love you will do for you. It makes me so grateful for the friends I have and have had and the people that have supported me through my malignant melanoma journey.

And I'm sure that I'm like most people. I'm sure everyone wishes that they could go back to the way some things were before they had cancer. I get caught up in the pity. Because, even though I've made it through so much and I've made amazing friends along the way, I still get lonely when I think about old friends. I miss being able to talk to people that knew me from way back, and wouldn't be shocked by anything I did. And I could see so much of myself in them, listening to where they were in their discovery of themselves. I learned a lot about myself and about life just by really hearing their words. I miss being there for someone else. I miss my young friends, who I could always turn to when I just needed to be free for a while from all the ugly things in my life. Free to think about nothing but fun for one whole evening. But I'm so happy I'm starting to see that ME that was here before melanoma. I really liked that girl. She's finally coming back.

I started looking back through old posts, and found several drafts that I never published. This one was of particular interest and kindof hit on this topic. I think I finally have the guts to put it up here. Plus, it's got a positive message, so it's win-win. One less thing.

Enjoy. :)
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In the beginning, I was surrounded by people who'd say, "We're gonna beat this thing!" and we'd rest assured knowing that I was tough and I'd never let cancer take me. And I think that's how it works: you actually believe in your heart of hearts for a while that your own strength and determination is all you need to survive cancer. And then you come to a point where you just pretend that it is. And then, as time went on, I think we all saw that it was not a fight to survive; rather, it was a war. Ongoing battles, one after the other, all deteriorating morale and forcing us to question our ability to go on.

When treatment began, slowly, those people who were so gung-ho to fight this with you were reduced to bystanders while you lay in the hospital bed waiting out treatment or the side effects. And then you begin to understand that no matter how much they want to fight this with you and be there for you, YOU will be the one who has to do it. You and only you. You will have the i.v. in your arm, you will feel the all the aches and pains, you will be reduced to something you never imagined, and you will be the one sitting in the lead room waiting for the next test. And when the realization of how things really are comes to you, it will be you who will sit in that MRI for next two hours with just your thoughts.
And then they begin to realize it, too. And that's when the first big change takes place, and the ones who can't stand the helplessness that they feel begin to fade like the fog does at dawn: quickly, but in a way that no one notices at first, with it all suddenly becoming clear.
I look back at those times now, when I first began to feel lonely, when I was so confused and hurt by what was happening, and I wish the Me now could've been there to explain. Because now, with some time out from under the cancer cloud, now I feel so sad for them, to be faced with such a scary thing, and to feel so much terror that they didn't know what to do except pretend that it wasn't there. I don't blame them for pretending it wasn't there.
Then I think of the ones who didn't run, and how sticking it out beside me was rewarded by the anxiety of abnormal results of labs, regularly scheduled scans, more scares of recurrences, more tests and surgeries and terrible statistics. It's like melanoma was determined to punish them for sticking it out. And I know I didn't make it any easier, with my own depression and mood swings and inability to cope.
And then finally, when there was only those last few left standing, they had to live through the threat of moving to a stage IV, and they had to hear those words that meant "if certain things come about here, there will be no more choices." That was the finally agony, watching their faces go through that, and feeling the final, flat pull of distance. Like saying good-bye.
And now. Now, if I really wanted to, if I dedicated myself to it, I could actually pretend that none of this ever happened. I could actually go on with life and act like I never had to survive cancer, and that things like that could happen to other people, but could never happen to me. Some days I wish I could really do that, or at least, as a dear friend says, I wish I could "pretend to pretend."
However, once again, out from under that dark cloud of recurrence and the depression that comes from an incessant "what if," now I see everything so clearly, and most days I don't even wish that I had never heard the words "you have cancer." And that's when you know that you've truly made it through. Do you know what it feels like to finally say that and mean it? Boulders, mountains, continents off my shoulders.
I can't believe how much clarity I've achieved just over the last couple of months. It's amazing how much a little alone time has allowed me to heal and to really come to terms with big ol' melanoma. I won't say that things haven't been tough. But I will say that I am blessed to be alive today, blessed to have lived and blessed now to "have arrived." Blessed for the lessons. Blessed to have the knowledge that so many don't have. Blessed to be able to be there for so many people. Blessed to have seen every friend who was there and every one that wasn't. Blessed for my experiences.

I've made peace with my new life. And I've made peace with what my body has put my loved ones through. I never would have chosen it, but I'm glad it was chosen for me. What a blessing.

-MM

My Story

In May 2005, months before I had turned 31 years old, I was working as a medical assistant in a not-for- profit clinic. I had moved to Dallas from San Diego the previous December to be with my dad who had terminal renal cell carcinoma. He past away in January and I decided to stay in Texas, near my family, for a while. I took the job at the clinic because I really loved the doctors that worked there- they really viewed their position as doctors as a means to serve society- and needed work, but mostly because I felt they were doing good things and I needed to be out of the house, keeping myself busy, not wallowing in grief.
The job did not offer insurance, but I did not plan on staying there long-term, so I wasn't worried about it. The doctors really took care of their nurses, though, and one day, while showing a nurse friend my pedicure, I asked a doc to take a look at a mole on my toe. The mole had been there my whole life, and had within the last year started to bleed. It sat square near the top of my smallest toe, but I was a runner, and ran about 25 miles a week, so I always assumed it was just irritated from that. Dr. Daya told me to go across the street to a dermatologist friend of his to have it removed. The derma took a look at it and said it was probably nothing to worry about, but needed to come off. It was perfectly symmetrical, had clear borders and normal color. I asked how much the lab fees would be because I was paying cash and not making great money. I also asked if it could be sent diagnostic lab I was familiar with, simply because I knew their prices. He said we would work it out but insisted on using a laboratory which specialized in derma cases. They gave me the number to an automated system and said the lab results would be ready in a week. I didn't think much of it.
A week later the doctor I was working for, Dr. Daya, called me into an exam room. I was a little freaked because the only reason I could conceive of him wanting to talk to me one-on-one was because I had done something wrong and was going to be in trouble. He was looking at the floor and very solemn, and told me he was sorry to be the one to tell me, but that I had cancer. "Nodular malignant melanoma," he said, "a very aggressive form of skin cancer." He said I needed to get immediate care or that I was in danger of dieing.

A month after the diagnosis, I finally found someone to who would see me even if I didn't have insurance. It took weeks of begging and searching and networking, but we finally found Dr. Beitch and Dr. Venkatessan. So, here's the short version:
May 2005- Diagnosed at Stage II.
June 2005- I went to an outpatient hospital and had the skin and some of the flesh around my toe removed, a skin graft taken from my thigh, and 3 lymph nodes from my groin to determine if the cancer had spread. Two weeks later the results came in that the borders around the skin left on my foot were positive for melanoma as well as 1 of the 3 lymph nodes. Now considered Stage IIIc.
July 2005- I had my smallest toe, part of my foot, and all 16 lymph nodes from my groin removed in outpatient surgery.
Outpatient surgery is no fun, especially if there is abdominal surgery involved. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.
August 2005- I began high dose Interferon in a hospital. Interferon is a biological therapy/ immunotherapy for high risk patients. The treatment is a little dangerous and has pretty serious side effects so it required 5 day hospital stays for 4 weeks.
September 2005- The treatment lowers your ability to fight infection, and in early Sept I discovered that my leg was red and tender, and I had 102 fever. I had contracted a staph infection and had to stay another 3 weeks in the hospital fighting that.
October 2005- I was sent home and Rxed low dose Interferon to be self administed by injection for the next 11 months. I would be very sick and unable to work. Off and on through the year I was sick, jaudiced, and had heart palpitations and trouble remaining ambulatory. Spent some of the time in a wheel chair.
October 2006- Finished the treatments, but the treatment had caused a condition similiar to chronic fatigue syndrome. Spent a full year and a half combating those symptoms.
June 2007- Routine PET scan showed an inflamed inguinal node which doctors were concerned was melanoma. Node was removed but no evidence of disease found.
Present- The majority of the symptoms from Interferon have subsided. Currently NED (no evidence of disease.)

There is no remission for melanoma, because there is no cure, and, essentially, it's going to come back. There isn't even really a treatment for it. Even Interferon, which I took for a year, is rarely Rxed anymore because the results are so iffy (only a 6%-20% chance of staving off disease) and the side effects are so horrendous. Interleukin 2 (or IL-2) is also a treatment option, but has about the same results and even worse on the side effect side. I prefer quality of life to doing a treatment like that again. According to the American Cancer Society and most of the doctors I've seen over the last 3 years (and there have been a lot!) my chance of living to 2010 ranges from around 27% to around 52% and my chance of living to 2015 ranges from around 22% to around 37%. But, to quote Fight Club, "On a long enough timeline, the survival rate for everyone drops to zero." In a way, I'm lucky because at least I'm not going to work some shit job that I hate in the hopes of one day, after retirement or something, enjoying life. I enjoy it now. I live as fully as I can. And it's a good life.
There are some very hopeful treatments for melanoma in clinical trials now, such as vaccines. But until some kind of effective treatment comes out, I am not getting regular scans. My oncologist kinda said, "What's the point? There's no treatment anyway." and I agree. If I get scans every 6 months, I'll be a nervous wreck until the next one. So, I'm taking it as it is.
I'm hopeful about the future. But more importantly, I love the present. It's all we have, anyway.

To See things as they really are

At the beginning of life after treatment, I began to wonder what I would talk about on my blog. I thought that cancer and treatment were over, and that I would be at a loss of how to continue my weekly musings on life.

What I realized later that I am more in need of this blog than ever before. The last few months have been a turning point for me, and my coping with cancer has just begun. Even better than that, though, I've found my way back to a point in my life when I saw things neither optimistically or pestimistically, but simply as they are, a beautiful dedication to embracing "what is." I feel I've begun walking a path where I can honestly and willfully see things in that truthful light and learn to not only accept it but actually embrace it for the reality that it is. It's a crazy thing, but it's liberating and nice to be comfortable enough to face truth and be able to deal with it.

A few weeks ago I was faced, for the first time, with what I can only guess would be the makings of a junior panic attack. Racing thoughts, inability to sleep, chest pains, that sort of thing. My doctor asked if I should increase my anti-depressant, and I thought of crawling into a hole. I was so disappointed that I wasn't able to handle this.
And then I thought of this very ancient, wise saying, "If you begin to understand what you are without trying to change it, then what you are undergoes a transformation."

I hope that this is true, because I realize what I am right now is a continuing fluxuation between grounded and then in the next moment hopelessly vulnerable. And I am working towards being okay with that. In doing that, I realize that there is no hope in trying to control all the delicacies of life, that every day new stresses, new tasks, new dilemmas are introduced that we will never be able to manage. Some are even in our control, and still will be unmanageable.

This is a relief to me, that I don't have to try to do that anymore. That I can go about my life, realizing the incessant ebb and flow of stress and eustress, and just take it as it comes.

-L