Monday, December 5, 2011

A Map of Me

When most people move they find letters from crappy ex-boyfriends (OK, maybe that's just me...)  pictures from when they were younger, and receipts for things they probably should not have bought. What do I find when I move the rest of my stuff into Mr. Spots' apartment?





I found a map that I had not seen since the day of my very first melanoma surgery. It's a map of me.

Malignant melanoma often spreads from the original tumor site to regional lymph nodes. Knowing that there is cancer in your lymph nodes is scary because it means that the melanoma has the ability to spread wherever its little black heart decides to go. How does one find out if there is cancer in lymph nodes? Well, that's where Sentinel Lymph Node mapping comes into play.

Lymph nodes are important because they are part of the immune system; they help fight disease. Unfortunately, sometimes cancer cells spread from the original tumor sites into regional lymph nodes. With advanced melanoma, it is important to find out if the lymph nodes have been affected by the disease. melanoma.com describes SLN mapping well. They say, "The first lymph nodes that the fluid from the tumor flows into are called the "sentinel lymph nodes." A sentinel is someone who stands guard. You can think of the sentinel lymph node as the gatekeeper to the rest of the lymph nodes. If the sentinel lymph node has cancer cells in it, there is a chance that the cancer has spread. If the sentinel node does not have cancer cells, the other lymph nodes in that area are probably also cancer-free, and the cancer probably has not spread."

How do you determine if there is cancer in the SLN?
Again, melanoma.com says, "The surgeon will inject a blue dye and a radioactive tracer around the tumor site. The lymph fluid carries the blue dye and tracer away from the tumor, to the nearest lymph nodes. The surgeon looks for the lymph node that has blue dye in it (or uses a detector to find the lymph node that has the highest amount of tracer). This is the sentinel lymph node. The surgeon removes this node and a pathologist will test it to see whether it contains cancer cells."

I vividly remember being on the table after the dye was injected into my body (this is actually quite painful) and seeing the way the two technicians changed. There was one lady, around my mom's age, and one younger guy. He was new to the hospital and it was obvious I was one of his first patients. I remember when they informed me that I was "glowing" in 4 separate areas. I asked the new guy if that meant that Dr. Pink would cut me in in all four areas. He quietly responded, "You want him to, ma'am." Well, shit.



It is weird for me to look at this sheet of pictures and know that it is actually me. I imagine most people feel that way. As you know, the results of the SLN were less than pleasant: Definitely positive for melanoma under left arm, right neck, and "possibly positive" under right arm. Ew. 

When I received these results, we immediately started looking for cancer centers who specialized in melanoma. Mom kept pushing for Memorial Sloan Kettering Cancer Center. After talking to the people in the scheduling department, and many hours of debate and frustration, I decided it was best. 

MSK determined that there was not enough melanoma in the SLN under the right arm to say for sure that it was positive. They did agree on the other two reports though. This meant I was stuck with the decision of having the full lymph node dissection or "watching and waiting." (Have I mentioned that I hate that term, by the way? Must think of a more positive way to describe the observation treatment plan!)

After meeting with Dr. Glinda, my surgeon at MSK, I decided that having the full dissections were necessary. When she admitted that she would do the same if she were in my shoes, I knew it was what I needed to do. That way it would allow us to know exactly how far this cancer had spread and it would also give me a peace of mind. 

I had the full dissections and before I even left NYC to heal, Dr. Glinda informed me that all of my lymph nodes were clear: No evidence of disease. (And yes, this news made me cry in the middle of the busy waiting room.)

People have asked me if I regret having gone through the full dissections. My answer is--and always will be--Absolutely not. Sure, I have some pretty intense nerve damage. And yes, my right neck/shoulder looks a lot different than my left side, and at times it makes me very self conscious, but because of these surgeries, I know that I am fighting melanoma just as hard as I can fight. If it spreads, I will know that I made the necessary decisions to try to prevent it from spreading. I could not sit home and night and wonder if there was more cancer in my "glowing" areas. That is just not who I am. I am a need to know girl. Some would argue--including my first oncologist--that the full dissections were unnecessary, but I would bet money that he would change his mind if he was the one with cancer...I rest easy at night because I know that I am taking all of the necessary steps to fight this thing called Melanoma.

Oh, the memories...

8 comments:

Prayers for Jen said...

Hey there, not sure where exactly I came across your blog but I did and all I can say is I can relate to so so so much...Your positivity, your feistiness, your support team, your zest for life, your need to write, and your commitment for not letting Melanoma take over. My name is Jen and I'm a 35 year old mother of a 3 1/2 year old son and I am fighting Stage 4 malignant melanoma at the moment. I have Melanoma too. In 2006, I was diagnosed with Stage 3 Melanoma and essentially went through everything you are describing except my SLN biopsy was on my right thigh drain tubes and all. I did Interferon treatment and am being treated at MD Anderson. At the time of the Stage 3 diagnosis, I didn't have a son. I almost made it to 5 years which is the golden ticket so to speak in Cancer...2 months shy of that and 3 miscarriages later trying to conceive our second child we got the heart wrenching news no one wants to hear. The BEAST was back and this time it's stage 4 and in my organs. Here I am today, being treated again at MDA on the new FDA approved drug Zelboraf and LIVING IN MOMENTS. Your blog spoke to me so I decided to write. I started a blog when this all started happening. If you want to follow it's:

http://jenprayers.blogspot.com/

Something comforting about knowing another Melanoma Warrior....there are many things you just get so I'm sharing my story with you....Good luck on your journey. This stuff isn't for the weak and I'm determined to see a cure and get the report: "No further evidence of disease" Hang in there and be healthy: Jen

Tim said...

Couldn't agree more about the "Watching and waiting" terminology. It sounds so passive when in truth it's a constant state of hyper-vigilance that includes a staggering number of doctors visits, tests, scans, biopsies, etc.. Of course, don't forget the lovely gyrations going on in your mind during all of this (which we affectionately referred to as my "freak and panic" period).

Yep... "watching and waiting"... tell that to someone who hasn't experienced it and the first thing they'll ask you is "so you're not going to do anything?" or "you're just giving up?"... It's been the most exhausting year of "doing nothing" in my life.

I never experienced the SLN biopsy decision myself. I assume that this is because the egg sized swelling in my armpit was what finally made doctors realize that the other lump in my chest (that I'd visited them about on at least 3 prior occasions) wasn't just a "cyst" like they kept telling me it was.

I had the full dissection of the lymph bed in my right armpit, but other than the fact that I don't get to go to the pool very much any more (my heavy chest scarring and the weird sunken hole in my armpit freaks out the kids), I don't regret it. The nerve damage takes some getting used to, but I've been fortunate that I haven't experienced any lymphedema. I figure a little numbness was a good trade-off to know that while the melanoma had completely overrun (essentially consumed) that one lymph node, all the rest were clean (I'm pretty proud of that one stud-of-a-lymph node for holding down the fort!). I wasn't really given another option but I'm pretty sure that if I'd had a choice, I'd have done the full dissection for the knowledge to be gained.

All the best to you Chelsea (and to you too Jen. I really hope that the Zelboraf is successful for you!)

---
Tim

Mrs. H said...

Chelsea, I have always had faith in you knowing that you would always make the best decision regarding your treatment. I wouldn't have done a single thing differently. It's been a long hard year for you, but you are a true inspiration to so many people. I am so blessed to have had the chance to get to know such a wonderful person! You're doing great things. You're changing lives. You're saving them, too. The education and awareness you're putting out there is making a difference!

The Path Traveled said...

Chelsea,
Your story is bitter-sweet. Bitter , that cancer did this ti you as young as you are and sweet- that you are a survivor and blessed. Stay strong and always fight!

Kate said...

Thanks for sharing your map and your decision making process. Bottom line is that you make the best decisions FOR YOU at any given time and therefore those decisions are ALWAYS right! Stay strong and all the best to you as you courageously fight this, enlightening people along the way.

Becca said...

Once again, your eloquence has summed up nicely what many of us have experienced and/or are feeling. I remember my SNB fondly and with a smile, it hurt like hell, but I yelled out "SON of a BITCH!!" so loud that the two techs laughed. They made the difference, they were so great. But that damn procedure was THE most painful of the whole cancer experience for me. As for doing a full lymph node dissection, hell yes! Get those out of there!! I think you can rest easy knowing you've done EVERYTHING you could to fight back.

Like I told my mom the other day, "I'm glad I'm NED, and I hope I stay that way, but if I ever advance to stage 4, then... IT'S ON, BITCHES!!!"

Love and hugs!

Rpm said...

always good to read your posts Chelsea. My onc dr ended the Interferon, I was one sick puppy and I"m NED. Getting ready for Christmas with all the kids and grandkids at our home. I hope you and your family have a great Christmas. Congrats on moving into Mr Spots apt (I hope i didn't misread that part). 5 bouts with this crap (3 with prostate cancer) have really taught me to love the people that i love as absolutely and unconditionally as I can. I wish you a long and happy partnership.

the other Chelsea's dad.

Pocketful of Cancer said...

Good lord, does the SNL injection procedure hurt. The radiologist administering the injections told me "it will be pretty uncomfortable."

When I asked "Will this be uncomfortable, or will it suck pretty bad?", she responded "Yeah, it's going to suck pretty bad." She was right.

I guess the injection separates the dermis from the epidermis - which is about as pleasant as one could imagine.

The nodes were ultimately clean - that time around anyway. Unfortunately, at least in my case, SNLB is still only approximately 50% accurate in detecting melanoma.