Too-Much-For-One-Blog-Post-Title

Remember how I became really lazy in updating this blog? It is happening again.

Kick me. Throw something at me. Or just turn to Twitter/Facebook/Instagram and you can see that I haven't forgotten about melanoma awareness. In fact, I've been SUPER busy with it!

Prepping for an interview with the New York Post.

I love the months leading up to May. In just 3 years I have seen melanoma awareness grow. While we still aren't where I would like to see us, we are getting there. Alright, let me do a little updating.

Remember last year the American Academy of Dermatology launched the Spot Skin Cancer campaign in May? Remember how they asked the melanoma community, on Melanoma Monday, to wear orange? Remember the outrage from it? So does the American Academy of Dermatology. Many of us within the melanoma blogging community received an email a few weeks ago inviting us to a conference call to discuss AAD's plan for this melanoma awareness month. Instead of rehashing the conference call, especially because Al wrote about it so well, I suggest you read his post! We were all so thrilled that the American Academy of Dermatology read our emails, heard our frustrations, and reached out to us to apologize. I fully intend to support their efforts in raising awareness for this cruel cancer!

I also spoke with a drug company who plans to host a blogger conference in May! I wish I could share more info with you, but be on the look out for it in the coming months. I was so impressed with how interested the company is to promote melanoma awareness so I'm thrilled to see what happens!

This past Saturday was all about indulging in our city's St. Patrick's Day events. I lathered on the sunscreen and headed downtown with my husband to meet up with some of our friends. We had such a fun time!

 

 While enjoying the green beer, I received a message from my melanoma friend in Texas. She said that a reporter for the New York Post was working on an article regarding a donation made to Memorial Sloan Kettering Cancer Center. The reporter wanted to speak to patients who had been treated with Yervoy by MSK. Jennifer passed along my contact info and I was able to talk to the reporter Sunday morning.

So what did a reporter for the NY Post want to talk to this Virginia girl about? It's kind of ridiculous. Apparently folks in NY are royally pissed off at billionaire David Koch and expect New York-Presbyterian Hospital to turn down the $100 million donation he recently made. $100 million dollars, y'all. The reason they don't believe the hospital should accept it? His conservative political beliefs. (Insert eye roll here. It always comes down to politics, doesn't it?)

According to the NY post, Mr. Koch has given MSKCC  $61 million since 1992. This money was extremely instrumental in the development of Yervoy. Should Sloan-Kettering return that generous sum of money because Mr. Koch doesn't agree with Obamacare? Really? (Insert annoyed face here.)

You can read the article for yourself here; however, there are a few things I want to add:

1) The article's title this morning was "Cancer patients bash Koch hospital donation protesters." First, I can speak for Erin and myself, we didn't bash anyone, not even the protestors. When questioned about my feelings, I said that maybe I am selfish, but I'm grateful for the money that Mr. Koch donated because without money, there is no research. Without research, there will be no cure. I don't care where the money is coming from as long as it is used for the right reasons. I'm grateful for his donation.

2) The new title is "Koch hospital saved my life: Cancer patient." I think I'm just going to wait for Erin to blog about this because I'm sure she's going to have something to say. (Insert another annoyed looking face here.)

3) I remember the day Yervoy was approved by the FDA. I was sitting in my hospital bed at MSKCC, recovering from 2 full lymph node dissections, when my surgeon walked into the room. Dr. Ariyan sat down on the end of the bed and told me the news. She had tears in her eyes because she knew what this approval could mean for many of her patients: a new chance.

4) What would I say if confronted by Mr. Koch? Two words: Thank you.

5) So that's what it's like to be interviewed by the New York Post. (For the record, the reporter was SO nice and I enjoyed our 30 minute chat. I'm glad I introduced him to Erin because she was totally the right fit for this story. She's a badass melanoma warrior!)

**On a happier subject, I had the opportunity to chat with Robin over the last few weeks regarding articles for the website cancercommons.org  Talking with Robin, even about melanoma, was fun! She was so great to chat with and it was a pleasure telling her my story. Robin's article was published today and I am honored to be featured as a Super Patient! The article briefly touches on my melanoma diagnosis, why I said NO to interferon, and how I ended up in a clinical trial at MSKCC. Feel free to check out the article here. I encourage you to browse their entire site. There is a ton of important information.

Hopefully only one more time in this chair!

Oh, and by the way, my scans were A-OK! I was totally unremarkable! (The one time I strive to be unremarkable! Ha!) The lymph node remained the same size as it was in January. Scans 3 months in a row? I'm pretty much glowing. I'm so relieved to have a break until May!

I also had my second to last infusion! Can you believe it will be 3 years in May? My liver is apparently feeling it though. I received a call today from the oncology nurse that my liver enzymes--AST--are elevated. This happened after my last infusion as well. Maybe I really  am getting the drug. (Oh, and I promise, I had the bloodwork done last week, before the green beer! Hahaha!) I will go back this coming Thursday to have my labs repeated. Hopefully my liver will heal itself just like last time!

Alright, if you got through all of that rambling, THANK YOU. I'll try to do better about blogging, I promise.

XOXO

A Letter to My Liver

Dear Liver, 

I know I've put you through some trying times. 


There was spring break in St. John: 

There was college:

 There was college graduation in Las Vegas:

There was that year after college...

The point is, I haven't been overly kind to you. 

How should I put it? I was kind of a party girl.

But times have changed, liver.

I behave.

I only indulge in adult beverages on rare occasions...

...such as a very rainy Saturday, NED results, or because there's an awesome band playing that I just have to see.

So, you see, I've matured.

Some.

But now, you seem to be paying me back for all those wild nights.

Elevated liver enzymes?

Why now?

The oncologist said it could be a side effect of Ipilimumab.

My sister would say it's Richmond catching back up to me.

Who knows?

I just ask, dear liver, that you treat me kindly as I do you...now.

Much love,

An Improved Chelsea




OK, now that that's off my chest..

I came home today after work with the phone call from my doctor weighing heavily on my mind. When I went in for blood work this morning I didn't think anything of it. I never do. After being in the clinical trial for 2 years and 2 months I'm used to going to the lab a few weeks after my infusions for routine blood work. I never have an issue. When I got back to my desk today after lunch I checked my cell phone and saw I had a missed call from New York. Only one person calls me from New York: My oncologist (or his super wonderful assistant! Hi Pam!)

When I heard his voice on my voicemail, I knew it was about my blood work. He never calls unless it's to tell me a result or to reassure me that everything is OK. He's all about trying to convince his patients to let him do the worrying. (I know we all still continue to worry, but it sure is nice knowing we have a doctor worrying along with us.)  Anyway, he told me my liver enzymes are elevated. He asked if I've had alcohol lately, if I have hepatitis, and if I've been feeling OK. I answered no to the first two questions, and explained I was really sick last week. He told me that elevated liver enzymes can be a side effect of the drug, and that while we do not know if I'm getting the drug, this is a good indicator that I am. I will go back a week from today and redo the blood work. If my numbers are still at this level or higher, he said we will further investigate. I don't have the slightest clue what that means. I didn't even ask him because I think I was subconsciously hoping I won't need to know.

When I got home I remembered that the research nurse had given me updated paperwork when I was in their office 3 weeks ago. I'm glad I kept it. It says: "about 8-37% of patients have developed serious problems with the liver as a result of ipilimumab treatment. Inflammation of the liver due to ipilimumab can range from mild or moderate (around 1%) to severe (around 7%) and in a very few cases, it can be life threatening. Acute liver failure resulting in death has occurred in less than 1% of patients. However, most severe cases have been successfully treated by stopping ipilimumab treatment and by administering anti-inflammatory medications such as steroids. You should contact your doctor if you experience symptoms that may be associated with problems of the liver that include fatigue, weakness, vomiting, nausea, yellow discoloration of the eye or the skin or abdominal pain. More frequent blood draws and a liver biopsy may be required if you develop serious liver abnormalities."

Apparently this isn't the first time that they have run into this type of situation. It just seems so odd to me that I'm just now experiencing it 2 years and 2 months after beginning the trial! I know they say ipi has a delayed reaction, but goodness! It's a double edged sword though; these results indicate I really am getting the drug and not the placebo. I want to keep getting the drug; however, I don't want to damage my liver!

Hopefully I will go back on Monday and my results will be totally back in the normal range. If not, I know my doctor will find the best and quickest way to make sure they get back to normal. I trust him.

(Again, to my liver, I'm sorry for all of those parties...I sure had a blast!)

Rash Pathology Report

I received a call from the very sweet--I will be scheduling to see her from now on--dermatologist at Sloan Kettering today. The pathology report of my rash came back supporting the two things Dr. Lee mentioned. Basically, the pathology report was not definitive, except that I have no need to stress.

1) It could be eczema brought on by the drug I am (possibly) receiving. According to the pathology report, it could be possible. She mentioned eczema but then quickly jumped into what she really thinks is causing the rash

2) She believes the rash is caused by the inflammation of capillaries that have ruptured which allows small amounts of blood to accumulate in the surrounding tissues. This is usually seen in children. She said it is usually located on the belly, booty, and legs, but can also been seen on the upper parts on your body. It can also cause joint pain a few weeks before the rash appears. (HELLO, Y'ALL REMEMBER THE PAIN/SWELLING I HAD IN MY HANDS FOR A FEW WEEKS?!! It is completely gone now!) She believes it could be a new response from the drug.

Dr. Lee said I am quite an unusual case so she is going to present it to her group of colleagues on Thursday to hear their opinion. She repeated again that it is usually seen in children so this is unique. She said we may have to do some further testing; however, it is VERY possible we will just let my body heal on its own. She feels certain that it is nothing serious. That is the most important part.

I would post updated pictures of my rash, but quite frankly, I did not feel like shaving my legs today. ;-) The rash IS healing--without medication--but it is still covering my legs. Dr. Lee said that the vessels in legs heal the slowest so she believes it will just take time. I will find out on Thursday/Friday if further testing and treatment is needed.

It will be interesting to see if this happens again closer to my next treatment date!

This is not the first time a doctor has told me my case is unusual. I never do like the sound of that, but at least I make for a non-boring patient, right?

There is always a positive.

Red Velvet Cupcake

Celebrating 

CLEAN SCANS 

with a red velvet cupcake 

in the chemo suite!

Your thoughts & prayers worked yet again. THANK YOU.

More to come later...I am exhausted!

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.)