Friday, January 6, 2012

Life of a Drama Queen

Before melanoma I would not have analyzed every headache, every low grade fever, and every swollen lymph node. Now, I have been known to call my mother after her bed time, crying, because I have a swollen lymph node while battling a cold. Cancer makes you a tad bit paranoid. OK, maybe a lot paranoid.

My latest freak out is over my hands. I have been having pains in my left pointer finger since November. It would swell and ache for no reason at all and then go away. I would struggle to open a water bottle. Now, the pain is in every single finger. It feels like I am progressively losing strength in my hands. It makes me want to shake them, to wake them up, to do something to make the blood flow again. This morning in the shower I struggled to squeeze the bottle to get conditioner out. Today at work I battled with the old stapler. It hurts to bend my fingers. It hurts to stretch my fingers. There is no making it feel better. My hands ache, friends. They ache!

I would not freak out about this if I had not also been experiencing such bad headaches lately. I KNOW that I need to go to the eye doctor (it's on my to do list for next week) and I know that I stare at numbers and a computer all day, so having a headache is honestly not that surprising. I don't know if I wait too long to take medicine to fight the headaches, but I become dizzy at times as well. The combination of a headache, the dizziness and losing feeling in my hands is causing me to go a little batty.

I needed advice last night. I don't often post on the Melanoma Research Forum because I feel like there are so many other people that have genuine needs and advice. I am--luckily--in a stage with this cancer that I do not need too many questions answered. Last night, however, I needed advice. Those folks, as they have in the past, helped me. They linked me to a website that list side effects of ipi (yervoy) and sure enough, numbness of hands and feet is on the list. (PS, Mr. Spots, now I have an excuse as to why I am cold all the time lately--I am usually hot--It's a side effect!)

I, then, had a nice little pity party for myself on Facebook. I was upset because the fear lives within me. After Randi passing away last week, my mind played games with me. About six years ago, Randi was in my shoes. She was beginning to live a life with stage III melanoma. Now, she's gone. Fear.

I am so grateful for melanoma friends on Facebook because despite my pity party, they came to my rescue with support, love, and suggestions. It was brought to my attention from someone actually receiving yervoy--for sure-- that weakness/tingling/numbness/aches in the hands and feet are actually a side effect of ipi (yervoy). Well. I was not aware.....

My oncologist, The Wizard, questions me about my hands and feet during every appointment, but I just assumed it was because of all of the nerve damage I have in my neck/arms due to the surgeries. I did not realize it was a side effect of the drug. Maybe this very uncomfortable pain is not such a bad thing after all....

Still, because the pain was getting to me emotionally and physically, I called my oncologist today. I was unable to speak to him, but the nurse (not my favorite research nurse, just a normal nurse) indicated that there may be a need to add a head CT to the next set of scans on the 20th. I am supposed to hear from my oncologist on Monday. I would assume that because headaches and numbness of the hands are both side effects of the drug, my doctor will pass on the additional CT unless my blood work is suspicious. I trust him.

Sometimes I have to give into the fear, throw myself a pity party, then realize I am being ridiculous.

Maybe I really am getting the drug after all...........



(However, if you wouldn't mind throwing a prayer in that the joint pain and headaches are nothing serious, I would really appreciate it.)

Wednesday, January 4, 2012

Learning from Grey's Anatomy


I have discussed throughout this blog how most people think melanoma is not a big deal. People assume that they will have a mole removed and that will be that. I used to be one of those people too. I can't tell you how many times people have said something like "They will remove it, and you will be fine." That is not exactly how it works with advanced melanoma...at all.

I am quite anxious for the next season of Grey's Anatomy to begin so I was browsing online about their past seasons. I remembered that in season 5 of Grey's Anatomy, Izzie learns that she has stage IV malignant melanoma. Although I do not agree completely with the way melanoma is portrayed  in the series, there are a few parts that hit home.

Here is what happens when Izzie's mom arrives to the hospital after learning her daughter has a type of cancer:

Izzie: Um, mom, just um, just listen ok? I... I don't have breast cancer. Ok, I have skin cancer. Or, what started out as skin cancer.
Mrs Stevens: Wait, hang on. Skin cancer? Oh, God! Izabel Stevens. Oh, you scared the hell out of me. And then you made me come all the way up here to Seattle just for some ugly old mole. Oh, sweetheart." (http://www.tvfanatic.com/quotes/shows/greys-anatomy/season-5/page-7.html)

How many of our friends/family reacted in this way? Of course they probably showed more sympathy and concern, but some probably blew it off as no big deal, right?

And then reality hits...........


"Izzie: Mom. It's not just a mole. I have stage 4 melanoma. It's in my organs. It's not just a mole.
Mrs Stevens: You don't have skin on your organs, hun. That doesn't make a whole lot of sense. Don't just sigh at me Izobel. Just, you know. Just explain.
Izzie: Ok, um, you remember when Grammy had that tumor on her thyroid?
Mrs Stevens: Grammy died. She died, she... really soon after that she died. Wh... why are you t... telling me this? You have a mole. I don't understand. You, you just... you have a mole. Wh... what. Wh...
Izzie: Ok. I'm sorry. That was a really bad comparison."

Izzie tells her mom that it is a bad comparison because her mom begins to grasp the fact that her cancer is cancer, it is not just a mole that has to be removed. You can see her shock in realizing that melanoma spreads beyond the skin. It is shocking because we all assume melanoma is juuuust skin cancer, we assume it is one of the better cancers to get. Melanoma is not curable. Remember that.

One last thing. What do you say to someone who has just learned of their diagnosis?

"Izzie: You say, they have a choice. They can runaway and hide from it, or they can face it. You say they need to be around the people who love them, because it's gonna be the toughest fight of their life, and no one should have to do it alone. And then you give them the odds. And even though a 5 percent survival rate is bad, it's really bad. You say.... you say....
Lexie: Screw the odds! People die of the hiccups. My mother died of the hiccups. Survival rate for that is what... 100 percent? The odds are that she should be alive right now. The odds are... The odds are crap! So people should face it and they should fight." http://www.tvfanatic.com/quotes/shows/greys-anatomy/season-5/page-14.html

That's right...

The odds are crap. 

Let's face it 

and FIGHT.

Tuesday, January 3, 2012

Something Beautiful

One week from today is my one year cancer-versary with our dark friend Melanoma. One year. Wow.

As you would expect, I have a lot of thoughts brewing. I did not sleep well last night. My sister and boyfriend joke that when I go to sleep, I look like I am dead, meaning that I do not move, snore, or anything that most people do in their sleep. (Although I do have frequent pee breaks. What can I say? I have the bladder the size of a pea.) They recently confided that when I was recovering from surgeries this past year, they both would get extremely close to my face just to verify that I was, in fact, alive. According to Mr. Spots, I have been tossing and turning lately. Anxiety? Or is it just the new Stephen King book interrupting my usually peaceful dreams?

I am not ready to blog about my anxiety tonight. Instead, on this cold Tuesday night in Southwest Virginia, I am going to go curl up to my guy. In my other blog, I once said, that like Elizabeth Gilbert, "I deserve something beautiful."


 I believe, with my whole heart, that I have found it.

Monday, January 2, 2012

Dear 2012


Sometimes someone else says something so well that I do not need to post anything except a link to the blog and a quote from the amazing post. This time it comes from my friend Becca.

"2012 I won't ask for much, just let me live and enjoy every minute. Let me laugh, let me show love to others, let me feel the sun on my face without fear.

And if anything bad should happen...

Let me FIGHT."
~Becca C.



She read my mind.

Saturday, December 31, 2011

Another Melanoma Angel.



This morning as I was being lazy in bed, chit chatting with Mr. Spots about our NYE plans, and browsing Facebook, I saw my friend Al had posted that yet another one of our melanoma friends had recently passed away. When I saw it was Randi, the tears immediately began to flow. How could it be Randi? I just talked to her a few weeks ago. She sounded good, strong, sending me more advice about how to deal with this disease and what questions to ask my doctor....

Randi was a beautiful wife, a loving mother, and a dedicated fighter. I only knew her from the blogging and Facebook world but boy, she loved the men in her life. She fought because of them. She would tell you so.

Randi's story is a bit different than others that I have shared with you. Randi was diagnosed with stage III melanoma in 2005. She had all of her lymph nodes removed in one particular area, and then went on to living five years with No Evidence of Disease. Unfortunately, melanoma showed his ugly face in April 2011 by reappearing in her brain and then spreading to other parts of her body. 

Yes, you read that correctly. For five years, Randi was healthy. She passed away on December 29, 2011. 

When people question why I must go for scans every 3 months and why I am participating in a clinical trial even though I am "fine" now, this is why. There is no cure for melanoma. For many, I don't want to say most because that is far too negative and depressing, melanoma hides for a period of time and then reappears when you least expect it. It does not simply go away. I live in 3 month spans. If my scans are clear this next time, I will go another 3 months. If not, we will fight.

As you head out to celebrate the end of 2011 (good riddance) and the beginning of 2012, consider adding "Protect My Skin" to your resolution list. You may think you look prettier with a tan, but I am sure you would agree that you look prettier alive than dead. You may think that mole is nothing to worry about but it may be the same type of mole that began my stay in Hotel Melanoma. Consider it.

And please, as you celebrate, send a prayer to Randi's family. They have lost a beautiful wife, a loving mother, and their toughest fighter...

Rest now, Mrs. Randi. We will never be able to dance on the tables in Vegas now, sweet friend, but I promise to continue to educate, educate, educate. I know that is what you would want.

Saturday, December 24, 2011

"Have Yourself A Merry Little Christmas."

As of two hours ago, I am home with my family enjoying this holiday. I wanted to take a few minutes to wish you and your families a wonderful holiday. Step away from the internet, your worries, and your dark thoughts, and enjoy this holiday with your family. Make memories.


We are all so blessed to be here.


As a little girl, I grew up listening to the Carpenters Christmas record so it is only right that I share this song with you tonight.

http://www.youtube.com/watch?v=TPAOBN4Pt-Y&feature=related

"Christmas future is far away

Christmas past is past

Christmas present is here today

Bringing joy that will last

Have yourself a Merry Little Christmas

Let your heart be light

From now on our troubles

Will be out of sight

Have yourself a Merry Little Christmas

Make the yuletide gay

From now on your troubles

Will be miles away

Here we are as in olden days

Happy golden days of yore

Faithful friends who are dear to us

Gather near to us once more

Through the years we all will be together

If the fates allow

Hang a shining star upon the highest bough

And have yourself a Merry Little Christmas now "



Merry Christmas, friends. XO