Taste buds Gone Wacky!

Imagine this. You wake up in the morning, prepare your coffee and bagel, sit down to enjoy your breakfast, and when you take the first bite you realize you have made an onion bagel instead of your normal plain one. You throw out the onion bagel, check the packaging on the bagels, and see that it claims to be plain. Odd. They must have been a bad batch.

A few hours later, your Mom has made your favorite treat...chocolate chip cookies! As a girl who loves her cookies, you're thrilled with the idea of indulging. You bite into the cookie. Peanut butter! Why in the heck would Mom make peanut butter cookies! Peanut butter is on the dislike list right along with melanoma (OK, maybe I do not hate it that much...)

Again, hours later, you are enjoying lunch with your family. You question what kind of chips Mom put on the table to go with our sandwiches. "They are just plain." Well, why are they burning my tongue and tasting oddly similar to salt and vinegar?

Clearly my taste buds are confused.

I have done a little research, but I can't find any real proof that Ipi causes taste buds to go wacko; however, mine certainly have lost it. Although my lack of appetite will be a good dieting tool, I know I need to take care of my body. Eating is so boring when you can't truly taste what you are craving!

Besides the crazy taste buds, I have not been feeling so great the last two days. The best way to describe how I feel is to say it is like having the flu. My body aches. I get chills. My body is hot to touch, but no fever. (Even though it feels like I have one...Mom keeps making me check because to feel me, I feel like I do.) I am tired. I haven't gotten much sleep this weekend so I believe that could be responsible for my exhaustion. I took a long nap today and plan on resting all day tomorrow.

It has officially been 10 days since my first treatment. If I am going to see any symptoms, it is sometime around this time.

If you are friends with me on Facebook, you know that my personal life took a big hit this weekend. I don't feel ready to talk about it yet, but I am OK. Life is too short to be anything less than happy. I will remind myself of that often.

I hope everyone had a lovely Memorial Day weekend. I hope you remembered the reason for the holiday... and the sunscreen!

Solider Tribute

Don't Fry Day!

I have always enjoyed Memorial Day weekend. It has been a time for family, fun, and sun. This year things wil be a bit different for me. There will be fun in the sun; however, I will lather up with SPF, I will wear a hat if I am in direct sunlight, I will take extra precautions to make sure that I do not burn. Heck, I don't even want a tint of color. The sun scares me these days.

Does that mean I am hiding under a rock? Of course not. I will still go to the beach. I will have margarita's on the deck. I will enjoy long boat rides. Instead of trying for that "gorgeous" tan, I will keep myself safe while doing all of the things I enjoy.

I hope you all enjoy your Memorial Day weekend. Love on your family. Relax. And don't forget the sunscreen...

Let's make it a No Fry Weekend!

Don't Lose Hope.

I was talking to my Grand Mother today when she mentioned that my Great Uncle sent her an article for me to read. He believed that I would find it encouraging. I randomly (or not so randomly, I guess, because what else do I do when I am bored?) logged onto Facebook and one of my fellow melanoma warriors had the article posted to her page.

It discusses a woman from Virginia who was told she only had 6-8 months to live, but due to the recent progression with clinical drugs for melanoma, she is still here. Of course she is not cured of melanoma, but the drug has given her a life again.

Read article here: http://www.bloomberg.com/news/2011-05-25/roche-leads-deadly-skin-cancer-turnaround-as-dozen-drugs-coming.html

I chuckled when I read that the president of the American Society of Clinical Oncology said, "“Being a melanoma doctor is not unlike being a Chicago Cubs fan." I know many of my doctors would agree. It is obviously frustrating to them to see such a deadly disease remain incurable. BUT, thanks to all of the researchers, volunteers, and doctors, progress is happening! The president said, " “This is a sea change for the melanoma guys.” A sea of change that we so desperately need.

My Great Uncle was right about the article, by the way, it encouraged me. Slowly, there are becoming more options for us melanoma warriors whereas there used to be only 2.

Protect your skin, friends.

And my dear melanoma warriors, don't give up the fight.

"Don't Panic."

When I first started writing this blog after being diagnosed with stage III melanoma in January, I discussed needing reassuring doctors. I am the type of (needy?) person who needs to be told the truth in a positive manner. When a doctor stares at an ultrasound picture, shakes her head, and says, "I don't know" I assume I am going to croak tomorrow.

Dramatic, I know.

When my good ol' friend The Wizard called me today, I had prepared myself for bad news. Being the "glass is half full" type of doctor, I should have known he would reassure me that I am not going anywhere anytime soon. He did just that. He automatically says, "So, about your ultrasounds, they still look fine to me." He agreed that there is a need for an ultrasound/needle biopsy, but that he is still not overly concerned. He said, "there is no need to panic." That is what I needed to hear because I was (not-so-secretly) panicking.

I shared a brief summary of the experience I had with Dr. Lee and The Wizard politely me, "next time, no panicking. You call me instead." Have I mentioned that I adore this guy? He won major brownie points with me today. The Wizard explained again that thyroid nodules in young women are common and usually benign. He also stressed that I had 2 major surgeries within 2 months of each other. There has been a lot of trauma to the upper part of my body. I am still recovering. In other words, BREATHE, calm down, and give my body a chance to heal. Because I still have the swelling issue above my collarbone, under the left neck incision, he believes the "concerning area" could be lymph nodes overcompensating.  Since I do not have lymph nodes in my left armpit or the right side of my neck due to the most recent surgery, this theory makes sense to me.

We also discussed my first day in the "Chemo Suite." I asked him questions about my dropping blood pressure. He said that the nurses tend to be paranoid during infusions because they want to stop any complications before it becomes a huge problem. He said because I am "young and thin" that it is normal for me to have a lower blood pressure, and it may have continued to drop just because I was comfortable. I did list how I have been feeling since the infusion. He said, "You do realize those are side effects of Ipi, right?" Oh, how I hope...

This phone call made me relax. I wonder if doctors realize how their attitude, tone of voice, and vocabulary can change an entire situation. I know I am not out of the woods yet, the biopsy still needs to be done, but I am not going to prepare for the worst. I know the possibilities, but I also have my faith. Sloan Kettering is taking such good care of me, why should I doubt them? If the biopsy shows something unattractive, they will tackle it head on. I know that.

Yesterday, as I was spending time on my friend, The Treadmill, I was listening to my iPod, and Jason Mraz starts singing, "We will cure this dirty old disease. If you've got the poison, I've got the remedy.
The remedy is the experience. This is a dangerous liaison. I say the comedy is that it's serious. This is a strange enough new play on words...I won't worry my life away..I won't worry my life away..." Isn't it odd how a random song can play and it is somehow fits perfectly into your situation? My buddy Sean, from PolyChrome, sings this song every once in a while, but it never registered just how perfectly it fits into my life. Oh, music... But Jason has the right attitude, I should not worry my life away.

As my sister reminded me, I have melanoma. But, I am not melanoma. I am made up of so much more than this dirty, unpredictable cancer. So, like Jason, I won't worry my life away.

PS) I did not realize how adorable Jason Mraz is until watching the video...Cutie!

Jason Mraz: The Remedy (I Won't Worry.)

Casually Waiting

As I am patiently waiting to hear from The Wizard about the ultrasound on Friday and the need for the biopsy, I am also trying to figure out if I received the drug or the placebo. I have been in a bit of a funk...if overall grumpiness & irritability are side effects of Ipi, well, I got it! ;-) Unfortunately, I think the blues come from the melanoma diagnosis itself. 

So, how am I feeling? I actually feel OK. I feel achy like I have worked out too hard, and I feel sleepy. Yesterday I slept the majority of the day, but I desperately needed it. When I casually rolled out of bed at 4:30, I felt a tiny bit better. It amused me that I was tired again at 10:00 considering I had not been awake very long. Oh well. My body needed rest, so rest I did. My eyes have been itchy; however, it is allergy season so I am not trying to read into that. I have had a headache, but I am stressed...My skin has felt itchy, but it could also all be in my head. I want the drug, so I want the side effects. We will see what happens in the next few days. The Wizard said that most side effects hit younger people in about 10 days. We will see...........!

I know I should be anxious to talk to the doctor and get the biopsy, but I am not. I know that is wrong...but I have family coming into town next week, I want to enjoy them! I don't want to have to go to NYC and have a needle jammed into the side of my neck. I think I will wait a few days. If he has not called me before then, I will call him. I know I should not avoid it, but I want to...just for a little while.

I am not going to let myself sleep the day away. I still need to unpack, organize, and take care of some things that should have been done on Saturday when I got home. Once all of that is taken care of, if I need, I will nap! ;-)


Happy Tuesday!

"Live a Little, Love a Lot."

"Step back, smell the rose
Feel the sand between your toes
Unplug, unwind
Step out in the sunshine...

Live a little,

Love a lot."

~Kenny Chesney

That is exactly what I did this weekend... After Friday, I needed some time to think, to process the latest news, and to rest. I needed some time to put a positive attitude back into place. Maybe I was caught off guard by the less than stellar ultrasound results, maybe I knew all along, I don't know. Regardless, hearing bad news is never easy.

Last night, after hearing I had a "woe is me" attitude, I figured I would stop moping around, get dressed, and go out for a while. I did, and I am very grateful to the friend who listened to me for hours. Keith Urban is right when he sings, "Everybody needs somebody sometimes." Although our problems are different, we were able to talk to each other and get a new perspective on things. It definitely opened my eyes to quite a few things.

Today I woke up feeling a tad bit blue. It was beautiful outside, everyone was heading to the beach, and I briefly considered going myself until I realized all of the luggage I would have to take with me: protective clothes, sunscreen, umbrella, chair, hat, sunglasses, cooler, etc. No-thank-you. Way too much work! For a few minutes, while still in bed, I wished for my old carefree lifestyle. 

Then I rolled over and moved on with my day.

I visited with Gran & Pop today. Pop had a bone to pick with me today...I tend to downplay things to Pop when I talk to him on the phone after receiving bad news. I tell him the truth, but I don't put the emotional part into it. Then he gets online, reads my blog, and becomes upset because he feels like I am keeping things from him. Gran and I tried to make him understand that I am not intentionally hiding things from him. It's just, sometimes things get too scary, and the last thing I need is for someone I love to become emotional over the latest scare. Someone else becoming visibly upset does me no good. And let's face it, I am a writer, not a talker! (At least not when it comes to the scary monster melanoma.) Love you, Poppy & Granny! :-)

After hanging with the G-Parents, I headed over to Assateague. 3 hours of talking, walking, and just staring at the ocean was good for my soul. And my goodness, I am exhausted now! Something tells me that when it is time for bed, I will sleep deeply.

One of my melanoma buddies wrote to me, "Keep moving forward and keep reminding yourself that you are fighting for your life. It’s ok to be selfish and self absorbed right now. You have to be and I hope you are. It’s time to circle the wagons and decide who you want inside your little circle." That is what I am doing right now. I need to redirect my energy to my health instead of focusing on things I cannot control. 

It is time to put my thinking cap on and find out what I really want out of this life that is mine...

The Sun Will Come Out Tomorrow

Have I mentioned lately

that melanoma really,

truly,

freaking sucks?

I can normally spin things in a positive tone, but I am physically and emotionally exhausted tonight. If you catch me sounding bitter and sad, tonight I am. I hate cancer. I hate, hate, hate it.

Let me explain my grumpy attitude...

We headed over to Sloan Kettering at 9:00 this morning to have my labs drawn. Although my appointment was not until later, they needed my morning levels. It started off well enough. The nurse called me into the room right away, I did not even have time to sit down. I liked not having to wait! She took my blood pressure---which was normal---and my temperature which was also normal. Then the little lady (and boy, she is TINY!) sits me down in the chair to draw the blood out of me. No one warned me just how much blood she was going to take. As she pulled tube after tube out of the drawer, I started to panic. Was that all for me? 16 tubes for MY blood? What are they? Vampires?  The poor vein she used in my hand did perfectly until tube number 12. It had had enough and refused to give her any more. In goes another needle to another vein. Ouch. Talk about feeling like a zombie...I walked out of the Outpatient Center thinking I was either going to fall asleep or simply pass out in the middle of the road. Loopy! Once I had some food and juice, I felt a little better. 

Since we had some extra time, we headed over to Barnes & Noble. As always, being surrounded by books made me relax. I felt a little less zombie like after rooming around the books. (PS, I am reading Elizabeth Gilbert's new book. Has anyone read it?) 

The meeting with The Wizard was quick and easy. He did notice my left swollen shoulder as soon as he started to examine me. I told him that I have been having pain and that the swelling began on Monday. He told me that we should not freak out yet, that my body has been through so many surgeries and trauma. He told me to give it a few weeks since I just had the CT Scan on May 9th and everything was fine. 

Then it was time for the ultrasound to determine if we should worry about the thyroid nodule that turned up on the last neck CT scan. I knew not long into the ultrasound that something was not right. The tech's mood changed. She continued to focus in just one area. I have had my fair share of ultrasounds, I knew this one was lasting a while. When she excused herself to have the radiologist take a look, she told me to relax. I laid there for about 15 minutes and then in walks a woman. "Hi, Ms. Price. I am Dr. Lee." Warning bells....a doctor came to examine me? After she started to do the ultrasound herself, I said, "So, I am assuming you saw something?" She said, "Yes, I see two concerning things." She told me that she sees the thyroid nodule that they were concerned about, but she also sees "something." She said she could not get a clear enough picture to determine if it is a tumor or if it is just a group of lymph nodes. She continued to examine me for a few extra minutes. I silently laid there, holding back tears. I was grateful that if Dr. Lee saw the few tears that sneaked out, she did not mention it. So, what does this mean? It means I get to be jabbed in the side of my neck with some needles to find out for sure what is going on. It will give us a definite answer. Dr. Lee is supposed to talk to my oncologist, The Wizard, and get back to me next week. Oh, reminder..I did have one lymph node tested from the left side of my neck back in January. It was negative for melanoma. Obviously something is going on, let's just hope it is nothing major. Dr. Lee was not exactly the most uplifting or reassuring doctor I have seen at Sloan Kettering. In fact, she was the opposite. However, I am going to try to cling to my faith...(Please pray it is not a tumor. Please....)

Did I mention that the ultrasound was completely uncomfortable? I am still recovering from surgery on both sides of my neck. My nerves are still recovering from the trauma. It hurts for my boyfriend to touch my neck. Think about a technician who has no sympathy! It was painful. I am very uncomfortable tonight. Very.

Because of the ultrasound discovery, I was unsure if I would still be allowed to begin the trial. Luckily, I was! Although there were no super handsome male nurses, I had a wonderful nurse named Bridget. She was not pushy. She wasn't overly excited. She was mellow, sweet without being too sweet, and quiet. She was my favorite type of nurse. 

The view from my "Chemo Suite."

Because my veins were unhappy from this morning, they did not want to cooperate. Apparently if you warm up the arm, your veins become easier to access. 

That seemed to work! Once she got the IV in me, the 90 minutes began to tick. Every 30 minutes, the nurse came back into my little suite to check my vitals. Each time she came to see me, my blood pressure was decreasing. When it got down to 103/54, the nurse called The Wizard's nurse, Mary. Mary told Bridget that she was not "too" worried, to give me something to drink, and continue to monitor me. Poor Bridget, I think she thought I was lying to her about feeling fine. Sure, I still felt lightheaded, had a bit of a headache, and was exhausted, but those 16 tubes of blood kicked my booty! Bridget just kept saying, "are you sure you are feeling OK?"

After the 90 minute infusion, I had to be observed for an hour. My blood pressure continued to rise back to normal. Soooooooooo weird....

At 6:00 tonight I was finally free to leave. I have never been so happy to see a hotel room.

Today was a hard day on me...physically & emotionally. It reminded me that things can change in moments. I am going to pray, hope and wish that the biopsy will calm my fears. Until then, I am going to regain a positive attitude. 

After all, the sun will come out tomorrow.