Avoiding Cancer

 How do you explain cancer to a child?

I'll follow up that question by saying I don't think there's a correct answer.

Y'all know that I have a special little man in my life. He's now 6 and pretty much the greatest kid ever. We're lucky that we have him 50% of the time, and I feel so thankful to have been able to develop an awesome relationship with him. G was 3 when I was diagnosed with melanoma. We never told G what was going on, just that I was a little sick and the doctors had to make me better. He was around during my recoveries after both surgeries, he has inspected my battle wounds, and he still references the sunken "hole" I have in the side of my neck. During the recovery period he was told quite often to be gentle with me.

We've always gotten away with just telling G that I was a little sick, the doctors had to make me better, and that's why I have scars. He was 3 for goodness sake! It was easy! He knows the importance of sunscreen--and as his mom told me, he's quick to remind everyone else of the importance of sunscreen--and while he knows that the lack of sun protection led me to this disease, he doesn't know the disease by name. It isn't something we talk about yet. I've never--nor do I want to--tell G that I had/have cancer. Not yet.

Tonight we ran into a little situation.

Our beautiful friend was recently diagnosed with breast cancer. As she has a husband and two young children, we wanted to do a little something that could help make things a tiny bit easier so we took dinner to them tonight. G made a card, wrote "Get well soon!" and knew to be very gentle with Mrs. Mel. We didn't think anything else about telling Gavin the reason why Mel is sick.

As we were driving down the road tonight, G says, "Why is she sick?" I start babbling about how she had a surgery that is similar to the one I had a few years ago, and G interrupts me, "I know, but what made her sick? What made her have to have surgery?"

How do you introduce Cancer to a sensitive 6 year old?

Mr. Spots and I both started babbling. I have no idea what he said, I said something like "she was a little sick so the doctors had to remove what was making her sick!" and then I changed the subject.

I know. I'm postponing it. But I know this kid.... I know he will worry about it, and I know Cancer will be mentioned until something else comes around for him to worry about. He's just like that. He has a sensitive heart and he will worry. So I avoided it. Again.

Only a few hours later, it almost came back up again.

I was tucking him into bed, giving him one last snuggle, when he said "I don't want you to leave." I said, "I know! But we are going to spend all day tomorrow and I'll be back in just a few days!" He asked me why I have to go, and then he said one little statement that hurt my heart: "We will need to be gentle with you."

I don't know if it's because of seeing Mrs. Mel tonight that reminded him of the recovery days, or if he just associates me going to NY for appointments as being something that may cause me pain, but he understands the seriousness of these trips.

I just can't introduce such a cruel disease to him just yet. He has seen enough of it without even knowing what it is. Can't I just protect him for a little longer?

Sigh.

On that note, I'm off to bed. It's that time again. That time being the time to fly back to New York for my next set of scans and treatment. Fingers crossed...

XO

Drama Girl

My doctor goes on vacation, I find a new melanoma, drama erupts! What does he expect? For me to behave while he's gone on a much needed vacation? Ha! Teasing, Dr. D., I could have done without that experience.

I wrote about how I received the phone call from Sloan Kettering stating that I was no longer able to participate in the ipi/placebo clinical trial since I had new evidence of disease. Yes, they were told by my dermatologist that it was an in-situ melanoma. Still, kicked out of the trial, the nurse said.

The Monday that my doctor returned from vacation the same nurse called and said that it was determined that because my new primary was an in-situ, I am not disqualified from the trial. 

I was confused about what I wanted to do. I was relieved because I wanted to continue the trial for the reasons I mentioned the other day. I was worried that I needed to do more or that it wasn't worth my time.

Like always, my oncologist helped answer my questions.

When I was waiting in the room for my appointment, my oncologist stuck his head in the room & told me that my scans were clear. Because he knows his patients, he knows I can't relax until I hear the results. (Yes, he also knows he has me spoiled & that the moment he doesn't come in before my scheduled time, I am going to know something is wrong. We've set up a bad habit, but I love him for it.) Then I met with the head research nurse who I had only heard about from my friend Julie. I mentioned to the nurse that I had not met her before, and she said, no, but I know who you are! Apparently, I caused a bit of drama with the doctors at Memorial Sloan Kettering last week. There was apparently a 4 day debate about whether I should be allowed to continue the clinical trial or not. I'm not sure who stood where or why, but it was ruled that because an in-situ melanoma is not invasive, I should continue as planned. The drug is designed to treat metastatic disease and has no control over new non-invasive melanomas which is why we must keep our scheduled appointments with our dermatologists! (Remember, early detection IS key!)

Because the research nurse has a lot of experience with folks on this trial she was able to answer a lot of my questions and provide me with information I had not heard before. For example, remember that weird facial swelling I had on a few occasions after my last infusion in December? Although rare, has seen that in other patients. The joint pain in my hands, normal side effect. The inflammation of my lymph nodes 2-3 weeks after every single infusion = totally expected.

See, these were all things that no one had really talked to me about. I don't call with problems, but I've called Sloan (and headed to my local oncologist in tears) after almost every infusion regarding the swelling. Finally, someone tells me to expect it!

When my oncologist came in for our appointment I jumped up to hug him and told him he's no longer allowed to take a vacation. He said he knows, that when he goes away, I cause trouble. We started chatting later and he said that while his much needed vacation lowered his blood pressure, he couldn't escape wifi so he checked his email. "Every time I checked my email I had 60 new emails & 20 of them were about Chelsea Price!" Oops.

I asked him point blank if he thinks we should continue what we are doing and he flat out said yes.

There was no debate.

Yes, continue what we are doing. In May 2013, it will be 2 years since I started the clinical trial & we have a year to go after that. None of us know if I am getting the drug or the placebo, but whatever we are doing is working for me at this time. I can't risk changing that.

I headed into the Chemo Suite 2 hours behind schedule only to have a nurse that my veins are not used to. Boy, after the lab folks having to use 3 veins for blood and the chemo nurses using 3, I was mildly annoyed.

 

 Sorry, doctors, that I caused a little confusion, but hey, that's why you earn the big bucks, right?! (Best story I heard: Julie asked her doctor how he does this--delivering the bad news--every day. He told her that he does it with hopes of delivering good news! *OK, I may have that a little wrong, we did split a bottle of wine, but that was the main point. He's there to give us our lives back.)

Speaking of Julie......... Not only did I get some QT in with my mom, I also got to visit with Julie and her mom! Remember Julie? (Please continue to pray for her.) We had dinner in Little Italy & laughed, laughed, and laughed! Seriously, the waiter kept laughing at us laughing! There were extra long hugs, maybe a few blinked away tears, but mostly there was laughter.

A good trip, answers to my questions, and meeting up with ladies I admire = one great week.

Have a lovely weekend, friends!

I Stand For Julie

I am completely out of ink & my printer has not even been plugged in since we've moved so I am missing the opportunity to hold up my Stand Up To Cancer sign! Please know that I stand for anyone who has ever been touched by the big C in one way or another. I stand for my Grand Daddy who died from lung cancer. I stand for the precious children who are learning new types of chemo instead of new playground games. I stand for the beautiful girl who dances around the oncology suite singing Kelly Clarkson's "Stronger."  I stand for my male melanoma warriors who wear tutus to 5K's.
I stand for us all.

Tonight I wish to honor a special friend. Tonight, and every other night, I stand for Julie.

 Summer 2011

Julie and I met in the Spring of 2011 when our mutual surgeon--our beautiful Dr. Charlotte Ariyan emailed me and asked if I would mind if she gave one of her other patients my email and blog address. Julie had recently been diagnosed with stage III malignant melanoma and was terrified. Knowing that Julie and I are close in age, both struggling to emotionally handle our new cancer diagnosis,  Dr. Ariyan felt like we could be great resources to one another. She was right.

Julie and I have been enrolled in the same clinical trial at Memorial Sloan Kettering Cancer Center for the last year and a half. We compare experiences, we joke about the vampires who steal our blood, we cheer one another on.

Just 2 weeks ago I was cheering on Julie from Virginia as she married her best friend.

 

 (Both photos legally stolen from Julie's Facebook.

Thanks, Julie!)

On Wednesday while I was washing dishes I received the text I never wanted: "Chels, not good news at all. I have spots in my liver, spleen, and lymph node in lungs."

Shit.

My melanoma twin, my melanoma friend, the girl who just got back from her honeymoon has advanced to stage IV melanoma.

 How could it be, we wondered? She just had scans 2 and a half months ago where she showed no evidence of  disease. Now, not even 3 months later, melanoma has spread to her internal organs.

They tell us that it can happen. They warn us that it is likely to happen. Melanoma is a silent beast, they claim. Yet, even when we're prepared, we don't expect it. Then it happens. 

Tonight--on World Cancer Day--I felt it is important for you to hear Julie's story. A young girl, a former tanner, a brand new bride is beginning the battle of her life against Melanoma. Yes,Melanoma...that thing that people still believe is just skin cancer.

 I stand for you, Julie. It's time to fight, girlfriend, and we're all holding your hand.

*I received Julie's permission to share her news days prior to writing this post.

And I'm Off To See the Wizard!

 Picture

During my weekly yoga session tonight, my instructor whispered a few words I needed to hear:

Everything is going  to be OK.

I have to head to Memorial Sloan Kettering Cancer Center this week for my 3 month scans, follow-up with the Wizard, and visit to the chemo suite for treatment. Like always, the 3 months of freedom flew by. I can only hope that this trip is as peaceful as the last visit. I would like to have they type of appointment that my oncologist refers to as a "Healthy Baby Visit."  It's quick, it's painless, and it brings good news to all. 

Instead of making this trip fully medical, we are adding an extra day to our trip so that we can fully enjoy 4th of July in the big city. I've never been in NYC for the fireworks so it should be a great adventure. Mr. Spots is actually joining me on this trip which I am really looking forward to. I think I relax a bit more with him next to me. 

If you have a free moment and wish to send some warm thoughts my way, I definitely would appreciate it. I know what the statistics say, and I know the likelihood that something ugly will pop up, but I am going to ignore those statistics. I am going to hope, wish, and pray, and then I'm going to try to put it in the back of my mind for the first portion of this trip. I need to have some fun with my loved ones before this appointment. I will, until Thursday, treat this as a vacation then it's time to be a patient for a few days.

Like my yoga instructor said, and like Mr. Bob Marley--fellow melanoma warrior--sings, "Everything is gonna be all right."