Helluv A Surgery

Before the Dr. scared the sh** out of us.

I have tongue envy!

Thank you, thank you to Ann-Marie for going to my pre-op appointment with me! I couldn't have survived it without you!

I thought I was meeting with Dr. M to go over my surgery scheduled for June 12th, but when Dr. A appeared I was confused. I soon learned that Dr. A was the main surgeon who will do the vascular and reconstructive portion of my surgery (basically all the work). I liked him from the start, confident, honest, forthcoming, compassionate and patient. He spent at least 30 minutes telling Ann-Marie and I all the nitty-gritty involved with this surgery...

Here is what will happen in a nutshell. I'll go in June 12th, surgery will take 6-7 hours. Dr. M will remove about half of my remaining tongue, Dr. A will take skin from the underside of my wrist (to become my new tongue surface), make an incision from my wrist to my elbow and remove tissue and vessels that will make up the rest of my tongue, open my neck, attach one end of the vessel in my neck and the other(s) to my tongue, take a skin graft from my upper/outer hip to replace the skin taken from my wrist. I'll spend the next 24 hours unconscious and if I wake up combative (fight or flight) they will knock me out for another 24 hours. It will take 3 days before the vessels have healed enough for me to move my neck. The first 48-72 hours will be spent in ICU. I will have a feeding tube in my nose for around 15 days. I may have a trach (to breath) for 5 days. I won't be able to talk for awhile (not sure how long). My arm will be in a cast and I'll receive physical therapy and speech therapy to help me get back full function of my arm and speech. (Ann-Marie, did I get it right?)

As you can guess, I got a little teary and overwhelmed to hear all of this. I just told myself, "I can do this". Oh God, let me be able to do this.

After all of this, Ann-Marie and I were able to laugh at the fact that one of the physician assistants thought she was my mom (she really didn't look at Ann-Marie and when she did, corrected herself with "sister?" and Dr. A (according to Ann-Marie, it wasn't in my view) had a booger hanging out his nose!

It's Clean Up Time

We celebrated our Memorial Day over the weekend, so while Jake headed into the office on Monday the kids and I tackled cleaning the playroom. My plan: good old fashion bribery. I had the kids take all the toys off the shelves and out of the toy box and put them all in the middle of the room. Then I told them we were going to go through every last toy, toss the broken ones, make a donation pile and put the ones to keep back on the shelves. The bribe....all the toys set aside for donation I would buy from them. Two hours later the playroom was spotless and they had a good chunk of change in their pockets for a trip to the toy store...which they insisted we go right away....so we did. Who knew getting kids to part with toys and clean up was so easy!

Reese is done with school so we celebrated with a breakfast date while Daddy went to work and Nate went to school. Yum!

Weekend Pics

Yesterday Nathan was trying to get Reese to swim with him, Reese said no. Nathan turns to me and says, " I wish Reese would swim with me, it's one of the only times I like him." Ha Ha.....brotherly love.

We have such great wild life in our neighborhood. Just this weekend we had two snakes, bunnies and a turtle in our yard. The shot of the deer is from our backyard looking into our next door neighbors backyard. So cool!

Did you catch this?

I feel a little bad about loving this.

Together

(And yes, that's Jake on the far left....hee hee!)

Oddly enough, my dear friend, Jen P., and I are conquering together this go round. I hope she finds as much strength in me as I find in her. In honor of skin cancer awareness month and start of summer season she sent out this email:

Dear colleagues and friends,

As some of you are aware, I have been battling cancer for almost five years. I was officially diagnosed with melanoma (the deadliest form of skin cancer) in September of 2003… more than two years after the first signs of the brown patch on my cheek. As a result, I had a significant amount of tissue removed from my face and neck and endured 12 months of interferon chemotherapy. In December of 2007, the doctors found a tumor in my neck… the melanoma had metastasized to my lymph node. After another invasive surgery to remove the tumor and other lymph nodes in January, I had 4 weeks of radiation treatments. Three days after my last treatment in March, scans showed the disease had spread to my lung. On May 2nd, I had a section of my lung removed. I am 35 years old and now have stage IV metastatic melanoma (there is no stage V). And unfortunately, there is no cure and no approved treatment plan for the disease at this stage. I am now trying to stay healthy enough to be accepted into a clinical trial to try to prevent the future spread of the disease to my other organs… my liver, bones, and brain. I tell you all of this in hopes you will become more aware of the dangers of skin cancer and to stress the importance of PREVENTION and EARLY DETECTION.

According to the Centers for Disease Control and Prevention (CDC), skin cancer is the most common form of cancer in the United States. The two most common types of skin cancer – basal cell and squamous cell carcinomas – are highly curable. However, melanoma, the third most common skin cancer, is more dangerous, especially among young people. Approximately, 65% - 90% of melanomas are caused by exposure to ultraviolet (UV) light or sunlight. For more information, please read the attached or go to the CDC website: http://www.cdc.gov/cancer/skin/.

Because May is Skin Cancer Awareness Month, the American Academy of Dermatology is partnering with dermatologists across the United States to offer free skin cancer screenings. If you are interested in finding out where you can go for such screenings, please click: http://www.aad.org/public/exams/screenings/index.html. The uses of preventative measures (hats, sun screens, etc.) as well as early detection (regular skin checks) are essential to your survival.

Thank you for reading my story. Please share it with anyone who will listen. I hope it will save you and those you care about from going through the same experience.

Sincerely,
Jennifer

Wednesday

Dr. M from Tampa called just minutes after I walked in from dropping off the kids at school. I'm so grateful I didn't have to sit around a wait for the phone to ring. Jake just happened to be home (he is usually out the door by 5am), but had slept in a little bit due to a sore throat and hadn't left yet, so we spoke to the doctor together.

The plan, surgery mid June to take more tongue tissue and replace it with soft tissue from my arm. Even though the recent pathology and scans look reassuringly good they want to be as safe as possible and make sure ALL the "bad cells" (I hate the c word) are gone. And although I really don't want more surgery I know this is the best route and will give me the peace of mind I need to move past this. It's a big surgery, a week in the hospital, but Dr. M says I should have a good recover and full function/speech after healing. No chemo, no radiation! Just surgery, recovery and an awesome summer of fun with my boys! Yippee!

I'm planning on having a lap top with me during my mute days in the hospital so I can email, blog etc. I'm counting on all of you to entertain me!

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The crossing guard at Nathan's school got hit by a car this morning. She was taken away by ambulance as I left the school. I hope she is OK.

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I saw the baby deer this morning. Alone, without it's mommy....for the second time. I watch too much Animal Planet because I called the wildlife hospital for them to check on it.

Update and on to other things

Preliminary results of the PET and CT scans look clear! Now I wait until Wednesday to find out what the plan of action is. Nervous, but enjoying the glimmer of hope Friday brought. Thank you Dr. C for giving me my results right away! Waiting is agony. Keep thinking good thoughts for me!



Good things happening that are keeping me UP.....

1. Reese didn't pick his nose at school Friday.
2. We had the house pressure cleaned and it looks so sparkly white and clean!
3. Nathan finished up soccer and t-ball this weekend. He's awesome at both and it was such a joy to watch him play. He is very proud of his cool trophies.
4. We spent the better part of the day Saturday in the pool, doing yard work and an impromptu splash in our neighbors pool. It felt soooooooo good to hang out without anxiety tugging at me.
5. There has been a baby deer sighting in the neighborhood (we have lots of wooded areas). We went looking for it last night....we just saw 4 adults, but can't wait to see it.
6. Yesterday when we were getting our suits on to swim, Reese was holding my bathing suit top and when I told him I needed it, he looked at me, pointed to my (rock star, $42,000, reconstructed...there are some perks to illness) breasts and said, "To cover those up?"

Ignore it and maybe it will go away

I haven't blogged about my cancer recurrence since my initial post. My hope was that if I didn't make a big deal out of it, it wouldn't BE a big deal. Plus, I feel cancer has taken up too much of my time already, why would I give it a platform once again?

The truth, I'm consumed in this nightmare of a moment and just want to find my way out. I feel like I'm being stalked. How can it be that for the last three years I thought I was cancer free, but I wasn't? How can it be that a little known cancer of the tongue could find it's way to my non-smoking, non drinking, non tobacco chewing tongue? How is it that I could live 29 healthy, uneventful years only to be plague by cells that kill people for the last 6 years? I know it doesn't make any sense to ask these questions because frankly it's likely I'll never get the answers, but I'm consumed in them.

I want to be boring again, blog about the fact that my three year old got in trouble for picking his nose in school after being asked to stop, or the fact that Obama is coming to FL in one week and I want to be there. Instead, I'm wondering through the day chasing the depression, fear and grief away with drugs and yet they still stalk me.

I had an appointment with a head and neck cancer specialist yesterday in Tampa. I hoped for the best, feared the worse and walked away with the unknown still lingering. The plan, I have a PET (whole body) scan and CT of the head and neck scheduled for tomorrow. They will review the pathology of my recent surgery to see if the margins were VERY clear. Apparently with tongue tumors clear margins have to be larger than most other tumors. The likelihood is that I'll need more surgery to remove more tongue and replace what is removed with skin from my arm to restore function. Then I guess based on how that goes I may have to have more radiation and more chemo. I think I can handle more surgery it's the radiation and chemo that scare the shit out of me. Please God, let surgery make me better so I don't have to endure more life saving poison.

I'm scared and sad. I know I'll find the funny and positive somewhere in all of this eventually, but I'm just not there yet. I just want to shake the "cancer girl" reputation I feel I have and be well so I can take care of Nathan and Reese and watch them grow into handsome, loving men. Is that to much to ask? Don't I deserve that?

Fuck you cancer!

Another Reeseism

First you have to understand that since Reese was potty trained over a year ago we haven't been able to get him to hold his penis up so he doesn't pee on the toilet, he refuses to touch himself...........

Reese running up to me completely naked today: "Mommy, Mommy! I started to pee on the seat and I picked my penis up like this (as she showed me what he did)! And I didn't pee on the seat!

We all cheered and passed around HI-5's.

I want a weapon.........?

Yesterday while at the book store Reese says to me, "Mommy, I want a weapon. Nicholas at school has a weapon." I soon realize it's not a weapon he wants, but a WEBKIN! Cracked me up!

And he woke up this morning, noticed Nathan's dirty t-ball uniform on the floor and told Nathan he needed to pick up his litter! Looks like I have another earth friendly child!

Foot Therapy And Our Garden

After a little retail therapy, I headed to real therapy. As I'm waiting for my appointment I notice the guy next to me has the smallest male foot I have ever seen. I wonder if that's why he's in therapy? And yes, I actually took out my camera and pretended to mess around with it so I could get a picture of his foot....... that's my huge flip-flop foot next to his!

Our garden! It's really coming along.

Ahhhh......I found a little bit of normal

For Jen

For Jen P., love ya girl and thinking about you today...thinking about us.

There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.-- Harry Crews

I have a couple of girlfriends who are like, healing. We take care of each other. They know when I need to be taken care of.-- Maggie Gyllenhaal

A Tough Week

Just over a week ago I had surgery to remove more cancer from my tongue. I went from pissed off, sad, to that question I know makes no sense to ask... Why? Because frankly if I knew why cancer kept creeping into my body I assure you I would stop doing it. Cold turkey.

Never before have I relied on medication to get me through a rough patch, but I called in the troops this time, Xanax and Zoloft are my best friends. It's 1:30pm and I haven't cried yet today.

Poor Jake. How in the world does he put up with me? The man is a saint.

I don't want to be all dramatic because there is a good chance surgery took care of my problem. I'll know in a couple of weeks. Until then, I'm thinking happy thoughts and I hope you'll think some for me too.

And if you are looking for a creative weight loss plan....tongue surgery should do it.