Monday, June 28, 2010

100% Cancer-Free!

Finally some good news!
All 8 of the lymph nodes they biopsied came back clean and they also got clean margins from the re-excision of my tumor site. No more cancer for me!

I am one week post-op and coming along. The swelling is going down, there's some bruising, we've made it through washing the southern hemisphere of my head but the northern hemisphere still hurts too much to touch. Staples and stitches are due to come out Friday if they continue to heal well. I'm still pretty tired as my body heals and I am doing my best to take it easy and let people help me. Mostly the MonSter is playing nice, though having major surgery is something that can trigger him to rear his nasty head. I try not to think about that and just focus on resting, healing and staying inside where there is lots of A/C!!

Thank you for all the well wishes and prayers.
We appreciate them more than you know.

Thursday, June 24, 2010

and it's not even Halloween

Well, I am now 48+ hours post-op and to say I have a bit of a headache is an understatement.

The surgery went really well though. They ended up taking 8 lymph nodes out of my neck, from behind and in from in front of my ears. Apparently the oncologist said it was a "lymph node wild goose chase" to find them all. I like to make people really earn their money, ya know? ;-)Results from the biopsy will be in either tomorrow or Monday.

He then cut out another 3x5cm section from my scalp which hopefully will turn out clean margins, meaning all the melanoma is out of my head. Then it was the plastic surgeon's turn to sweat and earn his money. He said he was worried about closing me, that the hole might be too big and might need a skin graft. eek!! Luckily, he is a genius and was able to do this thing called a pinwheel flap or advanced rotation flap where he makes a lot of incisions all over my head, cutting and stretching little pieces together until they finally cover the hole completely. So yay to no skin graft! Boo to major MAJOR headache. I definitely do NOT recommend scalp resonstructive surgery, so please avoid it if you can. ;-)

So they sent me home Monday night covered in gauze and compression bandages. Mom said I looked like a nun, being wrapped around my head, chin and forehead. I think "nun" was the nicest thing she could think of and I really looked more like the Mummy.

The first couple days have been rough (as all post-op days are for anyone!) but I got my bandages off yesterday and can move my jaw again and I slept in the bed last night instead of on the recliner! Yay for small victories! Everything feels really tight and swollen. My face is pretty swollen and bruised which it may be for a while. Overall though, I believe I have traded my Mummy look for that of Frankenstein. Truthfully, I have not looked at my head. I am choosing not to until it looks a bit better. With all the physical trauma who needs the extra emotional trauma of forever having those images burned onto your retinas? I sure don't. However, Chris described it a bit and it involves a bunch of staples and stitches and incisions and I am fairly certain I would give Frankenstein a run for his money.

Luckily, I am related to 2 of the best dressed women on the planet (my Mom and Grandmother) and they have loaned me a zillion fabulous scarves, which may be part of my wardrobe for a while as my head heals, and hair figures out which way it is going and the parts they shaved grow back in. Luckily they didn't have to shave too much. It could be a lot worse! I also have several new hats thanks to Grandmother, my mother-in-law Barbara and my friends Lyn & Jen. It will be a new style era of fabulous headwear for sure.

Anyhow, I wanted to put an update out for everyone to see. I am not lying when I tell people I have the best support system of anyone in the world. Thank you for all the emails to make me laugh, the sweet voicemails and awesome cards. (Once I feel a little better I will take pictures of my kitchen and post them - it's amazing to see all the cards!! I think I am single-handedly keeping Hallmark in business!) We have a few more rough days ahead as we endure the healing process, but at least we are in the healing process thank the Lord.

Will post the biopsy results as soon as I have them!
Much love.

Sunday, June 20, 2010

Father's Day

In honor of the day on which we celebrate our dads, I wanted to share a little bit about mine. Well, truth be told I have 3 dads now. For the past five and a half years I have had the World's Greatest Father-in-law (you know I won the In-Law Lottery, right? Seriously.) He makes me my favorite hamburgers, chili, or chicken soup any time I ask and he has even been known to put his own life in danger, hanging off his roof just to hang my WalkMS sign at his house!

For the past 15 years I have had the immense pleasure of having a stepdad who loves me, makes me laugh and taught me everything I know about theater. Before I knew he would become family, he influenced my decision to go to Pace...which is of course where I met Chris, so in effect, my stepdad could also claim to be responsible for introducing me to my husband.

Then of course, there's my Dad. Now I know everyone will say they have a great dad and all. And I believe you. But seriously....not kidding Dad is a rock star. I mean, he is actually a Rock Star. Well, by day he is a pediatrician and looks after people's babies, but by night he plays in a band called Paradocs and a few years back they invited me to come sing with them and now we have a pretty decent band and my Dad and I get to rock out together.

Suffice it to say that my Dad is 100% responsible for my musical talent.
Well, I don't Mom does a pretty mean version of both "Bali Ha'i" from "South Pacific" and the "Feed the Birds" song from "Mary Poppins", so really we'll say Dad is 98% responsible. :-)

For as long as I can remember I have loved music and it has been a huge part of my life and it is my Dad who gave this gift to me. He has that musical genius ability to be able to hear a song once and then play it on guitar (I hate people who can do this and I hate he did not pass this gift along to me!) He picked out our first piano, a beautiful Schumann baby grand and we named him Oscar. After Oscar arrived, Dad showed me which note corresponded to which piano key and from there, I taught myself to play. Oscar and I became the best of friends and when my parents divorced and we were going to be spending more time at my Mom's apartment closer to Pace, Dad told me to take Oscar with me. Even though owning a baby grand had always been my father's dream, he said Oscar needed to be wherever I was because we were meant to be together and we have been ever since.

I could write about so many things, including this generous spirit that my Dad has always had. For example, how many people form a rock band and go on to play dozens of charity events raising money to fight cancer, diabetes, HIV/AIDS, MS and more?? He is that kind of doctor, too, going above and beyond for his patients. When I was a little girl, he had a patient come in with a horrible heat rash, and discovered that the single mother was having financial troubles and living in a small apartment with no A/ the middle of Atlanta. Most doctors would have prescribed applying cool compresses and ibuprofen for pain and then sent them on their way. Not my Dad. My dad went to Home Depot, he bought an air-conditioning unit which he paid for out of his own pocket. He then drove to their 110 degree apartment and installed the unit for them. That's the kind of doctor and man my Dad is.

People say things to me about how "unlucky" I am, especially when it comes to my health. Sure, I probably have more incurable disease than most, many of which are difficult to treat, to say the least. But how can anyone be more equipped to handle them all than me, because unlike the rest of the world out there fighting diseases, I have Dr. Larry Clements on my side. To say that I am lucky to have my Dad as a father is the understatement of the century. Not only did he give us a happy, often magical childhood, but he has been my superhero physician for 30+ years, giving me advice, doing research whenever needed, calling whomever was necessary to ensure that I receive the best possible care and treatment for any/all of my illnesses.

It is no secret I am a Daddy's Girl, and while this phrase may have negative connotations for some people, if you were MY Daddy's girl, you would have nothing but positive, wonderful things to say about it, knowing that you were the luckiest girl in the whole wide world.

Happy Father's Day, Daddy!
I love you more than words can say.

Friday, June 18, 2010

Melanoma Melodrama

My brother gave me that title for this episode of my life.

Hopefully someday soon we will all look back and laugh about the ridiculousness of the "Melanoma Melodrama."
In the meantime, my surgery is this Monday, June 21st. I will basically be at the hospital all day but I luckily don't have to spend the night. First, they will inject me with some sort of radioactive dye (between the PET scan and now this I am surely going to turn into some sort of superhero - aren't there a lot that began with exposure to radioactive material?) After that I have to sit and wait for the dye to spread from the tumor site down into my lymph nodes then they put me under, take a bunch of my little lymph nodes out, cut out a bunch more of my scalp, then they attempt to put Humpty Dumpty back together again. The plastic surgeon who is sewing me up isn't sure what methods he will have to use, as he will decide that based on how much scalp the oncologist leaves for him to work with! (gross, I know.)

Thank you for all the emails, cards, phone calls. We really appreciate it. And thank you for all the offers for food, help with chores, driving, etc - we will be taking everyone up on them once we know a bit more what we need.

Send happy thoughts my way on Monday. I go under around 2pm and the whole thing should take around 3 hours...and then we are on our way to leave the Melanoma Melodrama behind us once and for all.

Friday, June 4, 2010


It would be a vast understatement to say that my life is not turning out exactly as I had envisioned. It has strayed from the path.

Just when my MS starts to behave and I think I might get a short break from all the “off-roading” I find myself thrown off the path, once again covered in mud.

But how deep is this mud? Is it quicksand-mud? Or just a little bit of dirt? Can I easily walk out of it and get back to the path or will I start to sink?

It is going to take a little while to figure out how deep or how shallow this cancer-muckity-muck is. I am stuck in the mud waiting on phone calls with my PET scan results and my LDH levels or with dates that my surgery can be scheduled. Then I will wait to see how the surgery goes, how much they have to remove and how extensive the repairs will be to the tumor site, whether it will be an easy close or will require reconstructive surgery. They will take out 3 or 4 of my lymph nodes and I will wait some more in the mud for them to tell me that they showed no signs that the melanoma has spread, or they will tell me the unthinkable news that it did show up in my lymph nodes.

People come to visit me in the mud, standing cautiously at its edges. My regular doctors and nurses come by and new doctors and nurses appear to join my Care Team. Friends and family arrive, at the ready in case I start to sink and they need to reach out with branches or throw ropes.

We are waiting to see what the mud does, to see how I react to this new mud and to see how long it will take to get out of it, so I can get back to the path that I was on…the path which will inevitably have changed by the time I return to it. So I will have to go in search of it, or else find a new path altogether, which is sad, scary, exciting and infuriating all at once. I wait in the mud and it’s lonely and messy and not at all fun.

And even though there are people all around me, I am the one back in the mud…still in the mud. Alone.
Some days are easier than others.
And some hours are simply unbearable and I am certain that I cannot possibly stand one more minute living in this muck and if I don’t get out soon I am going to lose my mind.

I just want to be a normal, healthy, non-mud-covered person making my way down the yellow brick road. Is that really so much to ask?