Monday, December 12, 2005

LIKE WATCHING GRASS GROW

posted Monday, 12 December 2005

Some of you may know that my hair is beginning to grow back. At first, it was just one hair. You had to look sideways, across the top of my head, to see it... but I knew it was there. Now, there are a bunch... and they are soft and furry, like baby hair... as opposed to the first few, which were like razor stubble. I wonder what color it will be! I hope it is curly!

If I can remember, I am going to try to copy Karin Stack's Journal of her Hair Regrowth (see below). I'm not sure what intervals she took her photos at, but I've heard that hair grows 1/4 inch per month on average... so maybe these are weekly shots?

TWAS THE NIGHT BEFORE CHEMO

posted Monday, 12 December 2005

Those of you who have never been close to chemo may not get all the references, but there are still some neat messages...

The Night Before Chemo
By Heather Warrick

T’was the night before chemo, when all through the room
Not a patient was stirring, from Ativan I presume
The chemo bags were hung on I.V. poles with care
In hopes that a cure soon would be there
The patients were nestled all snug in their lounge chairs
Sipping Ensure and hugging Relay teddy bears
And the nurse in her scrubs and I in my wig
Had just settled down for another chemo gig
When out in the parking lot there arose such a clatter
I sprang from my chair to see what was the matter
Away to the window, I flew like a flash
Tore open the blinds and threw up on the glass
Soothing my nausea with the fresh cool breeze
The wind took my wig and it flew with such ease
When what to my wondering eyes did I see?
Eight tiny nurses giggling with glee
Leading the pack was an oncologist so sweet
With a mission of cancer that they would beat
To help with side effects from chemo we blame
Was his arsenal of drugs that he shouted by name
"Now Xanax!, now Ativan!, now Zofran! and Compazine!
Lets offer comfort with bon bons and magazines.”
"On Vicodin!, on Darvocet!, on Tylenol! and Morphine!
Let’s make them loopy and make a big scene!”
To the top of Mt. Courage, to the top of Mt. Hope
Now dash away, dash away so we can help cope
With tumors and lesions and lumps it is clear
We must make their cancer finally disappear!
So up to the clinic-top, they flew and flew
With a sleigh full of drugs and the doctor too
Then with a jingling I heard from their purse
Was the prancing and pawing of each little nurse
As I drew in my head and was turning around
In through the vent the doctor came with a bound
His eyes, how they twinkled, his dimples so merry
His cheeks were like roses, his nose like a cherry
He was dressed all in white with an ugly plaid tie
He preached to the patients, “Do not ask why.”
Have courage, choose hope and just think positive
Live, love and laugh and your life will be lucrative

Never forget that you are heroes in my book
Conquering cancer without a second look
With a wink of his eye and a twist of his head
He soon let me know I had nothing to dread
A bundle of drugs he had flung on his back
He looked like a drug dealer opening his pack
He spoke not a word but went straight to work
Making me feel sick, so I called him a jerk
A human pin cushion, I had become
So multiple pokes, again I succumb
But then I remembered, my life he was saving
So I realized I better start really behaving
"What comes around goes around" I always say
And a bad attitude might haunt me one day
I thanked him for fighting with me side by side
With two against one, cancer cannot hide
Then laying his finger aside of his nose
And giving a nod, up the vent he rose
He sprang to his sleigh, gave the nurses a sign
To travel the world fighting cancer like mine
The sleigh was our hope and he was the driver
Bringing strength and good cheer to every survivor
I heard him exclaim as he flew out of sight
Happy Holidays to all and to all a good night!

Saturday, December 10, 2005

SMASHY SMASHY

posted Saturday, 10 December 2005

Today was my ZS holiday party in NYC. Before the party, I thought it would be nice to take Otis out to the dog park to get some exercise and hopefully play with some other pups. I was almost there... I looked up to find the park entrance, as I had only been there once before and noticed that it was at the next traffic light. What I did not notice... was the SUV sitting in my lane, waiting to make a left hand turn, with no blinker or brake lights on. At the very last minute, I saw him. I looked up to see if there was oncoming traffic, noticed it was clear and swerved hard to my left to try to avoid him.

The next thing I knew, I was sitting in the car, which was full of smoke... and a man was yelling to me to get out of the car. I was stunned. He kept yelling and I managed to get out of the car. Otis, however, was frozen. He had jumped back behind my rear seats, into the storage cubby that the roof folds into when the convertible top is down. He would not get out of the car. I couldn't pick him up and pull him out... he just sat there, terrified and trembling. The people around kept trying to get me away from the car, but I couldn't leave Otis in there. After 10 minutes, he finally jumped out of the car and started running around (obviously/thankfully not injured).

Nobody in either car was hurt. It could have been a lot worse (if there had been cars coming in the opposite direction, etc). It still really blows. I consider myself a very safe, attentive driver. I can't understand how I didn't see him. It really is unbelievable. Looking at my car, I can't believe that I stood up and walked away from the car. Both front airbags deployed, the window was smashed, the passenger door won't open, the hood is crunched all the way up to the windshield & parts of the engine are missing.... once again, I feel lucky to be alive... (enough already! I get the point! I am thankful for all that I have - my family, friends, puppy, talents and health!)

The accident happened near my house. Of course, nearly all my friends live 30-45 minutes north. Charlene & Jeremy were in Florida. Crash was in Virginia. Crash called Jim, my friend Cindy's boyfriend, who I met very briefly once before. He lives nearby and he graciously came and picked me up. Thank you Jim!

The car is totalled. I guess it was time for a new car anyways... I've always liked the Subaru Outback Sport, but 3 of my friends have nixed that (what's wrong with the subaru?)... I am also thinking about a small SUV (mileage is actually not terrible in the small SUVs or a hybrid... maybe even the Ford Escape Hybrid)... I'd really like to splurge on a navigation system. Any thoughts/ideas/comments?

Wednesday, December 7, 2005

OLD MAN

posted Wednesday, 7 December 2005

A BIG HAPPY BIRTHDAY to my dad today!

Though my friends thought he was "scary" (in particular, Gina, who wouldn't come over to play if he was home... and Jack, who thought he was some sort of GI Joe in everyday life), those close to him know what a big teddy bear he is... shhh... don't tell anyone....

The past few years have seen our family faced with more than one challenge. I am impressed with the manner in which you faced each one head on. From helping us with our homework... to taking us camping (at Darien Lake, no less)...to serving our country... to loving and nurturing our mother... to shaving your baby girl's head... You have been an example to us of what it means to be a loving husband and father.

I love you Dad! Happy Birthday!

Monday, December 5, 2005

NIP TUCK

posted Monday, 5 December 2005

Ok, so I had some misguided perception that all plastic surgeons would be young... fairly attractive... and funny.... no such luck.

As you know, I *love* my breast surgeon, Dr Dultz. She is kind of like my college track coach, ShaSha (if he told me to run 100 miles, I would have done it... because I knew that if he recommended it, it would make me better), except she's ridding my body of cancer and he just made my body jump farther.

Anyways... Dr Dultz gave me a list of 6 or 7 plastic surgeons that she recommended. Of course... not one of them accepts my insurance. In fact, there are only 3 surgeons in central jersey who do accept my insurance - one in Trenton, one in Princeton & one in New Brunswick. Dr Dultz told me she had "heard of" the guy in Princeton, but didn't really recommend one way or the other.

So I went to meet with him (since out-of-network coverage would only be 50% and this type of surgery runs at least $20k per breast - wowsa!). Dr W was kind of like that other dr on nip-tuck... the one with the curly hair... but add 50 pounds, 20 years and visibly waxy ears. Not that I judge a dr based on his appearance... it's just one of those things where you have one picture in your mind and the person inevitably looks nothing like that picture. Turns out Dr W played ultimate frisbee at Duke many moons ago... so I thought "great! I will have an instant connection with him"

Not really. He was very informative. Basically, there are two kinds of reconstruction currently used:

After the reconstruction, they often do a nipple reconstruction (still not sure how they do that) and then they tattoo on the nipple to make it look real. Huh - never thought that I would get a tattoo... mom's not going to like that ;)

Dr W told me that I probably don't have enough body fat to do the tram flap, which is fine with me - I don't think I would have really considered it. He also said that if I reconstruct with implants, provided that I don't want to upgrade to a "voluptuous C-cup", that I wouldn't need the expanders... they could just put the implants in at the beginning.

However, he did say that I couldn't drive for 3 weeks after the surgery and couldn't lift my arms over my head or exercise (other than walking) for 3 months after the surgery. That sounds crazy. I can see why they don't want me playing frisbee, but no stationary bike... no running... for 3 months? That seems a bit excessive.

Over all, Dr W wasn't horrible... but it wasn't that instant comfort level that I felt with Dr Dultz or Dr Cairoli. I made an appt with the Dr up in New Brunswick for next week. He is the chief of the plastic surgery department at Robert Wood (RWJ)... decent credentials... he has rights at Princeton Medical Center (where Dr Dultz works), but according to the receptionist, he only does reconstruction at RWJ. Ugh. It's much better to do this all in one shot... maybe if I beg? Well, it's worth the second opinion, even if I don't go with him for the surgery... it may make it more clear whether or not I should go with Dr W. What a pain! I can't imagine being so discontent with my own body that I would pursue this voluntarily... just for looks...

Thursday, December 1, 2005

MY DEOXYRIBONUCLEIC ACID (GENETIC TESTING)

posted Thursday, 1 December 2005

Just a quick note: my insurance company *finally* pre-approved my genetic testing (they wouldn't draw blood until the insurance approval came in...which took over a month to do...I mean, clearly I was trying to scam the system and get unnecessary needle sticks and testing...)

I met with Bridget (the same nurse that I met with for the initial counseling, along with another genetics expert to go over the final information. Basically, they wanted me to understand that the test may or may not provide conclusive information... and since I am the first person in my family being tested, even a "negative" result is not really conclusive (the only conclusive negative is if I were to test positive and another family member tested negative, since they already know exactly what it was that caused my cancer -- my family member does not have that genetic defect and is therefore a true negative) -- the tests are not always complete (they only test 80% of the DNA sequence) and there may be other genetic causes of breast cancer that they don't know how to test for yet. Ok, I get it... just take my blood and send it out already!

****any of my needle-queasy-friends should skip the next paragraph***

Finally, we headed to the lab. Anita, the same woman who always tested my blood before chemo, finally arrives and preps for the draw. My vein is apparently still quite hard from all the poisons they've been pumping into me. She inserts the needle and misses. I am stunned... this is my first "miss"... I mean, I've heard stories, but never had a problem myself... She jabs the needle around a few more times in my arm and finally gets the blood flowing. Not real pleasant... not really looking forward to giving them any more access to my veins... but at least this is done.

I should get results in 3-5 weeks. It will make a nice Christmas gift. Since I want to have surgery done by early January, we are cutting it close. Serves me right for procrastinating so much (but the insurance issue was not one I had anticipated). As I mentioned before, if the results come back positive, there is a very high risk that I will develop another tumor in the currently healthy breast (over a 50% chance...I don't remember the exact #s). As such, my dr has encouraged me to consider a "prophylactic bilateral mastectomy" (they have to take the left, as it currently has DCIS in it... but they would also take the right, to significantly reduce the chance of developing a future cancer) - to me it sounds like a no-brainer. In all honesty, it would make my decisions around surgery easier to have something conclusive to base it on (as the prophlactic surgery is always an option, regardless of the results)... but I guess I won't stress over it until I have all the information... then I will stress if I need to!

YOU ARE NOT ALONE

posted Thursday, 1 December 2005

The NNJ branch of the YSC (Young Survivor Coalition) hosted their first annual Survivor Celebration this evening. I decided to hike up to north jersey to check it out, hoping that at least there would be some good (free) food! Halfway there, I had a sudden realization: " what if nobody likes me and I sit by myself all night, looking awkward? worse - what if the dinner is just sandwiches and i drove all the way up here (1 1/2 hrs) for a bad dinner eaten all by myself??" My friend Mellen reassured me, and I continued on my way.

As I strode through the reception area at the hotel hosting the event, a woman approached me and asked if I was looking for the YSC event. Ok, I am so ready for my hair to grow back so that I am not the easily recognizable girl with cancer. But I guess it beat me walking around for hours, looking for the event.

I signed in and was handed a pink goody bag (actually had some nice stuff in it) and joined the other 20/30-somethings mingling in the room. Conversation was a little bit strained... but not terrible. I mean, we all knew we had one thing in common, but do you really want to open your conversation with "hey, are you estrogen receptor positive? --Me too!!!!" Two women were heading back out to the hotel bar to grab a glass of wine, so I jumped in and asked them to "wait for me!" Beth & Sue turned out to be pretty easy to talk to. On the way to & from the bar, we realized that we were all athletes... and not just gals who do aerobics (no offense to those gals, but that's who the YSC put Beth in touch with when she wanted to talk to someone else who was into sports), but pretty hard core athletes. Beth & Sue play on a club field hockey team. Beth was diagnosed 3 years ago - had chemo, mastectomy, reconstruction...the works... and was back out on the field... alas! Someone who could relate to my freakish woes about being able to play again! She confirmed that her saline implants were pretty darn sturdy and withstood some bruising and banging out on the field! Excellent news! And new friends!

The evening was 100% worth the drive (dinner was tasty too!)... not sure that I will trudge back up there for their monthly meetings, but it's good to know this group exists. And, honestyly, it was nice to see that I wasn't alone... that there are other folks my age dealing with similar situations... not that I wish to see others battling as myself (I certainly don't wish it on anyone!) but there was something about being in a room of 30 young women, who had fought and won... and continue the fight...