Late Night Thoughts

It is a Friday night & I am home in bed reading Lance Armstrong's book about his experiences with cancer. I started reading it when my melanoma friend sent it to me, but then I got the yucky ultrasound results, and really, I did not want to hear the word cancer anymore than necessary. Now that life has calmed down a little--ha!--I started reading it again. I can't wait to finish it and pass it along to another melanoma warrior, just like Paul asked me to do.

This coming Sunday will be six months since I was sitting in the dermatologist's office, laughing with the nurse and my boyfriend, and was informed I have melanoma. Six months since life as I knew it completely ended.  I thought this passage in Armstrong's book would help explain what it was like on that life altering day 6 months ago:

"I thought I knew what fear was, until I heard the words You have cancer. Real fear came with an unmistakable sensation: it was as though all my blood started flowing in the wrong direction. My previous fears, fear of not being liked, fear of being laughed at, fear of losing my money, suddenly seemed like small cowardices. Everything now stacked up differently: the anxieties of life--a flat tire, losing my career, a traffic jam--were reprioritized into need versus want, a real problem opposed to minor scare. A bumpy plane ride was just a bumpy plane ride, it wasn't cancer (70).

I remember laughing when the dermatologist told me the mole he removed was melanoma. I laughed. Who does that? I remember asking the nervous doctor if he was joking, my boyfriend getting out of his chair, placing his hand on my lower back, and the doctor repeating the information again. I remember the numbness that overtook my body. I didn't cry...no tears...until the head doctor came in and asked me if I had children. Then, I cried. That is fear.

When trying to find out how advanced my cancer is, I kept demanding to know "What does stage 3 mean? Am I going to die? Will this kill me in a year, 2 years, never?" Armstrong talks about how he handled that situation. He writes, "Each time I was more fully diagnosed, I asked my doctors hard questions. What are my chances? I wanted to know the numbers." That is how I was. I asked every single doctor my chances of survival. I needed to see the numbers. Before I was diagnosed, I used to joke, "If I have to get cancer, let it be of the skin." That thought makes me sick to my stomach now. I thought skin cancer was easily curable. Suddenly I am being told stage III melanoma is something I'll battle for the rest of my life and in its advanced stages, deadly.  All of my doctors were hesitant to share statistics because, honestly, they are depressing. My wonderful surgeon at Memorial Sloan Kettering summed it up best for me. Statistics are not important in the grand scheme of things because those numbers are not of 100 Chelsea's. They are of many different people with many different factors. There is no study to show how I am going to respond. Armstrong describes this in his book, too.

"What are my chances? It was a question I would repeat over and over. But it was irrelevant, wasn't it? It didn't matter, because the medical odds don't take into account the unfathomable. There is no proper way to estimate somebody's chances, and we shouldn't try, because we can never be entirely right, and it deprives people of hope. Hope that is the only antidote to fear" (95). 

Then Lance asks an important question. A question that has made me think since I first read it. He asks, "What is stronger, fear or hope"(95)?

I have no problem remembering the amount of fear I felt the first two months after I was diagnosed. It seemed like I was being beaten on the head each and every time I went to the doctor. First, I had melanoma. Then I was being told to spend time thinking about my desire for a family, possible radiation and chemo. Then I had surgery on 5 locations in one day. Then I had positive lymph nodes in 3 out of 4 lymph basins. Then I am being told I am not sick 'enough' for the best treatment available, time for another surgery, and now after all that, I am able to enter a clinical trial. I did not have time to have hope because the information I was receiving caused me to become even more fearful. I was too consumed with fear to even think about having hope.

But, you know what? I don't think fear is such a bad thing sometimes. Fear opened my eyes. I used my fear to educate myself on my options. I used my fear to reach out to other people experiencing the same situations. And once I stopped fearing every single doctors appointment, fear actually made me stronger. Fear allowed me to gain hope that maybe, just maybe, I could tackle this head on. Fear allowed me to realize just how badly I want to live.

As I sum up this post tonight, I want to share one last quote from Lance Armstrong. He writes, "I wanted to live, but whether I would or not was a mystery, and in the midst of confronting that fact, even at that moment, I was beginning to sense that to stare into the heart of such a fearful mystery wasn't a bad thing. To be afraid is a priceless education. Once you have been that scared, you know more about your frailty than most people, and I think that changes a man. I was brought low, and there was nothing to take refuge in but the philosophical: this disease would force me to ask more of myself as a person than I ever had before, and to seek out a different ethic (96)."

Cancer may have taken away the innocence of my twenties, but it has given me the opportunity to learn more about myself than I could have ever imagined. Despite all the negatives, melanoma has opened my eyes and is forcing me to not waste any more of my precious time. Like Armstrong, cancer is challenging me to be the best  I can possibly be.

And maybe that is a blessing in itself.

"Are You Sure...?"

As you know, I am in a constant battle with my insurance company. For some odd reason, they do not mind paying for my scans now. Maybe it is because my health care providers fight with them prior to the actual scans, but they sure hate paying for my blood work and pathology reports! Today I received an updated Explanation of Benefits that said they are still denying my blood work from May 6th and June 10th. Soooo, I called them up. They have this game they play with me every time I call to argue about a denied claim. Let's call it "Hide & Seek: Medical Records Edition."

Customer Service Rep: "We would have to have access to your medical records, then medical management has to review it before we can decide it is not a pre-existing condition."

Me: "You have access to all of my medical records beginning in December 2010."

Customer Service Rep: "We do not have any of your medical records on file."

Me: "Yes. You. Do."

Customer Service Rep: "I am not showing any records on file."

Me: "This happens every time I call you people. You tell me you don't have my records on file, I ask to speak to a supervisor, and suddenly--boom--you find those records. So, may I please speak to someone in medical management?"


Customer Service Rep: "Please hold."

Horrible Music Begins Here....


Customer Service Rep: "Ma'am? I spoke to someone in medical management. I don't see anything in your file about melanoma. Are you sure that is the right diagnosis?"

Me: Pause.........consider screaming at her.....decide she probably does not get paid enough to deserve my yelling and say, "Every single claim since January has been for melanoma. I think I know what the correct diagnosis is. May I speak to a supervisor?"

Of course she would not pass me along to the folks in charge, but I did demand her fax number and called up to Memorial Sloan Kettering Cancer Center to have them fax over my medical file again. When I explained to the nurse why I needed my file she said, "They are denying blood work? Blood work is pretty essential to your treatment...That's stupid." My thoughts exactly!

It is almost funny how great I am at arguing with them now. I know their next step. I know that the more angry you become, the more you demand to speak to someone above them, the more they are willing to help you. Why should it have to reach that point? Why should we have to yell and curse and cry before they even consider providing us with information on how to receive answers? I understand it is a business to them. They want to save as much money for as long as they possibly can. But, there reaches a point where it is unacceptable. To deny me for a pre-existing condition and have me send in my medical records is fine. To fight with me for almost 6 months, and claim you don't have access to my records time & time again is unacceptable and unfair to me. I could be using that energy on more important things like, oh I don't know, keeping the cancer AWAY!

Siiiiiiiigh. Let's hope that they will have this problem sorted out soon. I truly do hate when people cannot do their job correctly. Or maybe that is where my thinking is wrong...maybe they are doing exactly what the head honchos want them to do. The more time they deny my claims, the more money they keep in the bank.

It is all such a game...

...& I am tired of playing it.

"Tomorrows Technology, Today."

Keeping the tradition of being a lab rat, I participated in a clinical research trial on Friday during my visit with my new dermatologist, Dr. Maggoo. After noticing a suspicious spot on my right arm (see previous blog posts for pictures) Dr. Maggoo asked if I would participate in a study before having the spot biopsied. The technical name for the trial is: "In Vivo Confocal Microscopy of Cutaneous Neoplasms and Normal Skin." Phew---that is a mouthful.

The purpose of the trial is "to investigate new non-invasive imaging techniques for the evaluation of skin lesions, as well as normal skin...The long-term goal is to develop a technique that will improve the early detection of skin cancer and eliminate the need for many skin biopsies."

The possibility of less scars in the future? Count me in!

So, how does this work?

First, I should tell you (because I didn't know...) "in vivo" means in/on a living subject. So, obviously, I was the living subject. The confocal microscope was placed on my skin to look at the suspicious mole. "The reflectance confocal microscope uses a sophisticated lens device and a very weak infrared light source to imagine the individual cells that make up the skin." (Mom, and 6 doctors, watched all of this...From what I could see, it looked pretty freakin' cool!) Then, another device, an optical coherence tomography, "uses a lens and very weak infrared light to image structure of skin. The other device, the fluorescence confocal microscope uses a similar lens system as well as a small amount of fluorescent dye that is injected into the skin." "Your skin will be evaluated with one or both of these confocal microscopes and the OCT device. In the event that the images obtained from your skin or skin lesion meet criteria for removal, a biopsy will be performed."

The entire procedure was painless. It took a while since everyone is still learning the ropes, but it was quite interesting hearing my doctor teach the others. For the record, he seems like a great teacher. It also helped that everyone was super friendly and hilarious. They made me relax...(Soooo unlike the doctor who did my neck ultrasound!!) Like I said in the previous post, there are only 9 other places in the country who have the ability to do this trial. There are only 40 in the world. Dr. Maggoo flat out told me I was watching tomorrows technology being used today. I feel privileged to have been part of such an experimental trial. Maybe in a few years when this procedure becomes more readily available, more people will go to the dermatologist because they will not automatically fear having something removed. You never know why people postpone going to appointments...Fear is a funny thing, and denial is so easy!

As you know, I had the have the biopsy. I am hoping Dr. Maggoo was just being safe, but I will know for sure in a few more days. I will be sure to post when I get the results.

To those of you who have the opportunity to participate in trials, I encourage you to do so. Without research, we will not gain additional answers. Don't you want to help save someone from this nightmare?

Happy Wednesday, friends. XO!

A Quick Hello

I hope everyone had a safe & happy holiday weekend. I hope y'all wore your sunscreen! I headed over to Assateague Island Sunday evening for some downtime with my toes in the sand. It was 5:30 before I put my chair in the sand, but still, I was surrounded by people chilling under their umbrellas, wearing their finest large hats, and applying sunscreen like it was going out of style. I was SO impressed! Here I have been talking crap about people and their lack of sun safety, but it seems that people are more careful than what I feared. It was great to see.

I also got a chuckle out of three teenage boys. They arrived about 30 minutes after I did and set up camp right in front of me. At first I was annoyed because they had the whole beach to choose from, why did they have to sit on top of me? (This was after I had moved once already due to the obnoxious family of 15 who sat close enough to touch me...Remove yourself from my personal space, folks!)  Anyway, the three boys were obsessed with sunscreen. The one kid looked at his friend and said, "Does my chest look greasy?" The friend replied, "No." So, the boy added more sunscreen! I actually giggled out loud...and then pulled my hat down over my face to avoid eye contact... ;-) Not sure if he was trying to be sun safe or if he wanted the greasiness of the spray on sunscreen to make his muscles look more impressive....Either way, it put a smile on my face!

I am feeling pretty tired today. Instead of running around like Miss Social Butterfly, I stayed in my pajamas until 4 PM today. Can you believe it?! The last time I did that was following one of my surgeries! I needed a day of sitting still that did not involve being hooked up to an IV. It has been a bit boring, but lovely. As it is 8 PM now, I think I will curl up with my book & get ready for sweet dreams. Maybe tomorrow I will wake up rested!

7 Year Old Stage III Warrior

When I first got diagnosed with Stage III melanoma in January I felt cheated & angry. I felt like my biggest worry should have been the numbers on the scale, finding the perfect job, and simply enjoying my 20's. I have always heard that your 20's are supposed to be the "best years of your life." Instead, my life crashed. Then yesterday I heard a story that made me feel so sad & selfish.

Meet little Serena. She is a 7 year old stage III melanoma. So far in her 7 years she has been through 8 surgeries and months of interferon. Those who are familiar with the melanoma world know how rough interferon is even on the strongest of adults. Imagine a precious 7 year old going to the chemo suite 5 days a week for a month, undergoing 8 surgeries, all while her friends are out on the playground.

But, You know what I believe? Kids are tough. Kids have unusual strength & ability to get through things that crush the strongest adults. Still, little Serena needs all the support she can receive.

I am asking you to visit Serena's page to show your support: http://www.facebook.com/pages/Serenas-Fight/178408288887479 or her other website: http://www.caringbridge.org/visit/godsangel2010

This family, and especially this beautiful little Serena, need your prayers, your positive juju, and your encouragement. Serena's mother needs your advice, your support, she needs her own set of cheerleaders. She needs to hear that they can get through this latest battle.

Melanoma...it does not just attack adults. It can take away your babies. Protect them.

Chemo Suite, Modeling Experience, & A New Battle Wound!

Well, round 3 in the double blind Ipi trial world came & went with few complications (minus some missing skin...more on that later!)

Mom & I headed into the City Thursday night for a little exploring in SoHo. I really do love that area. You see such a variety of people, shops, and restaurants. I can see why people want to live there. Plus, it was an absolutely beautiful night. There was a slight breeze & NO mosquitoes. The lack of mosquitoes was very exciting for me since they have been so horrible here on the Eastern Shore. After doing some minor shoppig, we headed to Little Italy for dinner.

Little Italy:

The one place where it is still

socially acceptable

for the men to sweet talk the women while

standing on the side of the street.

We had dinner at Angelo's.

Oh, and wine.

One glass...or two...

won't kill me.

Friday morning, July 1st, we woke up early and headed back into the City. We stayed at The Westin again in Jersey City. It is my favorite hotel that we have stayed in since our trips to NYC began in March. (March? I don't even remember!) It is pretty, quiet, clean, and the beds are called "Heavenly" for a reason. I would suggest the hotel to anyone.

I made sure to eat a bagel & drink some juice before my meeting with The Vampires. After my first Ipi round, I learned quickly that losing 16 little tubes of blood makes you feel loopy. As usual, my hand had to warmed before my veins would cooperate. Then I started discussing Vegas with the nurse & quickly forgot I was being drained of blood.

My meeting with my oncologist, The Wizard, was uneventful. I updated him & his nurse Mary on the updated symptoms (including the random white hairs!) and they both seemed excited that it seems likely I am receiving the drug. They warned me that round 3 is when people get hit with the most side effects. Guess we will see what happens!

The Wizard re-examined the left side of my neck due to the swelling & pain I am still experiencing. He said that we could do my scans early; however, he's hesitant to subject young folks to more radiation than necessary. Since I am already scheduled for scans in the beginning of August, we are going to wait. Like we have discussed before, I have had so much trauma to my body in a short span of time. It is no surprise I am experiencing such pain & nerve damage. He put me on a medicine specifically meant to help nerve damage. (I will fill in the name of the medicine when I go home. I don't have the bottle with me.) I haven't started taking it yet. I wanted to be home since ya never know how medicine can affect you.

After verifying that my blood work was wonderful & healthy, I headed into to the Chemo Suite. Although I had a different nurse this time, I got to see the spunky nurse from the last session. She is a spit fire! Love her attitude and that she remembers her patients. That is important to me.

All cozy & comfy in my little room. I have had the same room all 3 sessions. I'm a girl who loves routine, so this makes me happy.

Following the 90 minute infusion & 60 minute observation, I had an appointment with a dermatologist. I am trying to think of an appropriate Blog Name for him. When I first started this blog I felt like it was safer (and more fun) to use nicknames rather than their real names. I would never want to offend any of them. Let's see....the dermatologist at MSK will be called... Dr. Maggooo. Why? Because it is close to his real name & I am not feeling creative. Mom & I both really liked him. He asked for me to describe the last few months for him, then asked why I made the appointment to see him. I said, "Well, it is time for my 3 month check-up...and I'm paranoid!" He laughed. (I think I amused him...He either thinks I am ridiculous or charming. I don't think there was a middle ground.)

He asked me to point out a few of my concerning areas before he examined me. There was one on my belly & one in my scalp that had been worrying me. Then he began his full body examine. Boy, he was thorough! He moved my hair all around so he could fully examine my head. He spread my toes apart so he could check in between them. (And there were some other awkward moments but I won't explain those...) Let's just say, I have never been so thoroughly examined! He came across one mole on my right arm, looked at it, felt it, looked at it again, and said  "Has this always looked like this?" Unfortunately, no. It had started to get darker. He said, "yeah, let's biopsy it."

Dr. Maggoo then had a nurse come in to take full body pictures of me. Let me tell ya....AWKWARD! I won't even go into the details because thinking about it makes me feel bashful. The point of these awkward pictures is to monitor my moles. They will send me a book with the pictures so that I can keep a close eye on my skin. Pretty smart, huh?

After the awkwardness passed, another doctor took me to a room with this odd looking machine. I will post a full blog about this later, but basically the machine is better than an ultrasound because it allows the doctors to see my cells, etc. It is an non-invasive way of seeing if a suspicious area needs to be removed. Dr. Maggoo said, "You are seeing tomorrows technology today!" There are only 10 of these machines in the United States & only 40 in the world! Pretty impressive. There were 6 doctors in the room...I knew it was new technology when that many doctors crowded into a tiny room. (Totally felt like a lab rat...but a cool lab rat!)

Here is the suspicious mole--it looks funky because the machine left a ring around the area:

It was tiny! But, it was raised & black.

Two days later, I took the bandage off. My skin is so sensitive...the bandage gave me a little rash. The spot where he removed the mole is tiny but it is sore. Who knew something so small could be so sensitive?! The location of it--on the inside of my elbow--makes it very sensitive. The stitches will come out in 2 weeks. I will receive the pathology report in 7-10 days.

So, that's what is new in my world...16 tubes of blood, 3 hours in the chemo suite, 2 hours and 15 minutes with an outstanding dermatologist, and a little tiny bullet hole...Sounds like enough drama for one Friday to me!

Again--thanks to everyone for the messages, comments, and phone calls. Your support means so very much to me. XO!

"Isn't it ironic? Don't ya think?"

Dad: "Are you going to New York tomorrow?"

Me: "Yes."

Dad: "For what? It's time for treatment again already?"

Me: "Unfortunately..."

 Seriously, the last 3 weeks have flown by! I had to laugh today. My friend John emailed me, I am assuming he read my last blog post about being so exhausted, and he said, "At least you will sit still while they have the needles in your arms!" That is one way to keep me in place!

I started to feel pretty rough today. Like after the last treatment, my neck is really becoming painful again. It is swollen, sore, and feels like the nerves in my neck are trying to crawl through my skin. Have you ever had an itch underneath your skin? It is A-N-N-O-Y-I-N-G. No matter how much you scratch in the itchy area, it continues to itch. Today my neck felt like someone had their hands on both sides, slowly squeezing. Uncomfortable!

ANYWAY....

It has been a while since I have shown y'all my "bad ass" scars. I had Mom snap two updated pictures of my most visible scars. (Remember...I had one surgery in January where they sliced and diced me in 5 areas: both sides of my neck, both armpits, and my back.)

Here is my back directly following the surgery in January 2011:

And here she is in June 2011:

Looks better, huh?

Here is the right side of my neck following the SECOND surgery---full lymph node dissection:

Here is Ms. Neck Scar today:

Dr. Adorable at Sloan Kettering did a freaking awesome job on this. I realize it still is not pretty, but I am not ashamed of it. I feel like it blends in fairly well...considering!


Although my scars are still noticeable, I am relieved I heal fairly well. Every time I see a tanning bed whore (I should come up with a more polite term for them, buuuuuut they make me angry...) I want to shove these pictures, and all of the other pictures from where I was cut on in FIVE locations at ONE time, in their faces! Today I logged onto Facebook and saw a girl had changed her profile picture. The very first thing I noticed was her white line under her chin. I know that line. I used to get it after spending too much time in the tanning bed. Sure, she looked pretty in her picture, but all I saw was her ignorance. Man, if I had known better, would I be in this situation today?


I read an article today (read article here) that begins: "Just because someone is college-educated doesn’t mean he or she is cancer smart." How true! I am not an idiot. I did well in college, I graduated from college, etc. Still, I visited tanning salons every once in a while. Ironically I tanned to prevent a burn...Mistake! But still. I wanted to look good! I associated being tan as being attractive. No, I never let myself go crazy with the tanning, but I had what I considered a healthy glow (I cringed as I typed that...) during the summertime thanks to my visits in the tanning salon.


This article makes an outstanding point...

"It’s ironic, said Morris Hospital oncologist Dr. Nafisa Burhani, that women work so hard to get a tan to look better, when melanoma can leave its victims so disfigured. Melanoma is a skin cancer that is very invasive, she said. “Melanoma can be very disfiguring,” Burhani said. “You need a wide excision area that can result in disfigurement. It can get ugly."

If I had to choose between my old, healthy, pale body or this new sore, scarred, and not-that-healthy body, I would confidently walk around being the palest chick on the East Coast!

My scars are a constant reminder that I need to continue to fight, strive to make others realize the seriousness of this unpredictable disease, and they remind me that even on my weakest days, I am much stronger than I had ever imagined.

OK, I leave for NYC tomorrow morning. I better pack my suitcase! You never know who you'll see in the Big Apple!