Let's Backtrack a Little

The Shaving of the Head:

During our meeting with Dr. Goldstein in Boston, one of the first things he said was, "You're going to lose your hair." Getting to that point was interesting. I think we had a good plan; cut it short little by little so it wasn't as stringy when it was falling from my head. I was down to the shortest pixie cut about the time the doctors expected it to fall out. Everyone was pretty dead on too. On the drug I'm taking Etoposide (sp?) the hair starts to depart at 14 days. There we were at 14 days when I started to notice my hairs didn't want to stay attached to my head anymore.

So that's the logistics part. But you have to consider the emotional part and after I had my "plan" the emotions were all I was considering. I felt like when the hair was gone it was going to be real. As if the mediport, the chemo infusions, all the blood test etc. didn't seal the deal enough. The bald part was really going to hit Cancer home.

I went to work Monday and Tuesday last week. The hair was bad. I didn't even wash it the one day. The next I refused to blow dry it because I was sure the power of the blow dryer would just send the hairs flying from my head. It was getting thin. You could see my scalp. But I just wasn't ready yet. I knew I had chemo on Wednesday and that I wouldn't be at work for at least two days. I thought if I can make it until then, it will be hair or no hair on my terms.

Amazingly, the back didn't look too bad. I'm sure a lot of people would prefer if I would report the news facing this way anyway.

Tuesday night I asked my husband to shave my head.

I think we were both nervous. Chris and I have a nice "getting home from work" routine. We hang out in the kitchen, debrief about our days, play with the dogs and sort of catch up. Often this includes a Miller Light. Since I've been off the alcohol train lately, Chris is picking up the slack as only a good husband would. I think the 2 Miller Lights he had when he got home from worked helped ... because shaving your wife's head is not as easy as it seems.

YOU KNOW WHEN YOU WATCH TV AND THEY SHAVE SOMEONES HEAD AND ONE MINUTE THERE IS HAIR THERE AND THE NEXT IT'S BALD. THAT IS BULL SHIT.

I just want to be clear. Whether it's that scene in the cancer movie 50/50, or Demi shaving her head in GI Jane, or the shit we watch on the Military Channel when the Marines get a high and tight hair cut in seconds flat. I'm here to tell you - it's Hollywood. Really shaving your head takes about an hour.

We lined the floor with a plastic drop cloth and I got out the good clippers. I'm saying that sarcastically, because they were $9.99 from CVS and that's probably the reason this shit took a hour. By simply running my fingers through my hair, it would come out in droves. We put some music on in the bathroom and Chris set to work.

What's the biggest worry when you are going to shave your head? That your head is shaped funny under all that hair. It turns out I have nothing to worry about there - my noggin is a perfect specimen. The problem was getting to it and then getting rid of all the dandruff that apparently has been living there for quite some time.

Chris was careful and kind, paying special attention not to nick my skull or cut off an ear. We laughed at how long it took. We removed a lot of hair just by tugging on it, so we didn't think the actual cutting would be so arduous. I was warming up one of Mrs. Rannazzisi's Lasagna for dinner that night. I thought I'd for sure be bald before it was warmed through. Instead, the oven timer kept reminding me we were ready to eat. But I still had half a head of hair.

I'll admit I put make-up on before we shaved my head. I didn't think I could stand to look at my head without hair AND without lipstick.

A little spotty, a little red and if you look closely, pretty flaky. Ick! Get me some Head and Shoulders!

We finally decided enough is enough - we could smell the Lasagna drifting in from the kitchen - we had been at this about 45 minutes. We took to the razor. We bic'ed it!

It was done! It felt funny. It looked funny. I still scare myself when I walk passed a mirror. But it was done. And this is how much hair is on the floor when you remove it all from your head.

At least Barlie came by to give her approval!

Back to the Chemo Routine

It's been a hectic week. Yet, after a set back with the platelet level two weeks ago and the blood clot last Wednesday. we're now back on track.

My wonderful sister, Ashley, came from Florida to help take care of me. It's helpful that I have a helper while Chris is at work. He can focus on his patients during the day and Ash can focus on me. I've been so lucky to have so many people be my "special guests" on chemo day.

I had a 2 1/2 hour infusion on Wednesday. They drip anti-nausea medicine and steroids through the medi-port first, then some Benadryl, then the chemo. It's the Benadryl that's my favorite part. I can feel it wash over me, making me drowsy. Before you know it I'm slurring my words and the next thing you know I'm out. How bad could chemo really be if you sleep through it.

I pack this huge "chemo care" bag each time. It's full of food and books and magazines and water and my i-pad. Everything you could need to pass the time. I have yet to dig anything out of the bag because either a). I'm talking the whole time with my special guest (shocking) or b). I'm asleep.

Thursday was the shorter infusion, barely two hours. I did get the shakes again - this time in my legs instead of my arms. So I doubled up on the Vicodin which helps quell the restless leg/limb feelings. It took a little while to kick in. So Ash graciously rubbed my legs which helped. Then we took the chemo pole for a walk up and down the hallway to keep my legs occupied. By the time we did one lap, the chemo was finished.

I feel good today. I'm sleeping like a rock, so that helps. My head gets cold sometimes, but I've received a bunch of great head coverings. I mix and match them with my outfit and my mood. My wigs are good. I'm only really wearing them when I go out in public. The Sarah wig, my go to one is a little itchy and the bangs poke me in the eyes. So I might need Kara, the hairstylist, fix that up for me.

My nephew Alexander came over yesterday and I think he was genuinely freaked out for a little bit. First I had a beanie kind of thing on. Then I said, "Do you want me to take it of?" I guess he nodded, probably more out of obligation that actually wanting to see my bald head. So I showed him my bare noggin' and I think it was a little jarring. I asked if he wanted to rub it and see how it felt, but that was way too much. Just like Meredith, coming on too strong to the boys!

So I put a hat on. We ate dinner. Then I modeled my wigs for him. His response when he saw the first one? "Wow, that looks so much better." Spoken like a true 9 year old. Then when I brought the red one out, he wanted to try it on. By the end of the night I think he felt a little more comfortable and he said we could still be friends. Thank goodness, because he's my love.

Nander, even more of a red head - Mer, with her Chef Boyardee look

There's no place like home, there's no place like home.

Hi. Sorry I haven't written in a bit. Grandma says she plays Solitaire on the computer every night, checks her e-mail and reads my blog. I assume that because I posted nothing new, Gram, that just gave you more time to play Solitaire.

So I was in the hospital. I'm thrilled to be out of the hospital. I think I was a trooper for a couple of days. Two nights in ICU which is really like being awake for 48 straight hours because they wake you up every 5 minutes. Three nights on the Cancer floor. Better sleeping environment, except for the flashbacks I was having to March 2009 when I spent 14 days in the same exact room. Eerie. It was here on days 5 and 6 that I really started having the shits of it.

However, tonight, I shall sleep in my own bed, cuddle with my husband who will keep me warm and safe, and be flanked on either side by my doggies who will breathe heavily and shed on me. I could not be happier.

The dogs went ape-shit when I got home today. I was gone six days - I could have been on a solo Caribbean vacation for all they knew - it was a long stretch. So you walk in and they are barking and crying and wagging their little tails so fast you think they might fly off. And when their tails get tired of wagging, they move their entire backsides back and forth, just so their tails keep wagging so they know how happy they are to see you.

At least that's what I think they are doing. They might just be looking at me saying, "Good, Bitch is bac!, She'll give us treats for sure!"

Either way, I'm happy to oblige.

There's so much to catch up on. I can't possibly do it tonight. I will fill in the blanks over the next couple of days. But the Cliff Notes version is: Big blood clot all around my port, three little vascular procedures cleared it up in 48 hours, started on blood thinner Coumadin, it takes several days for that to get up and running in your system. I hung out in a hospital room during a glorious 75 degree Spring weekend for the levels to rise. I couldn't take it any longer and Marcia sprung me from jail around lunch time today. (Once we were in the car, I said, "Hit the gas! Don't look back! We're outta here!") She's the best of the best! I'm not in a lot of pain. My arm is sore but not as swollen. I'm just wiped out.

Shaving my head was a hoot in and of itself, so I'll tell you the funny stories about that later. (It's not at all what it looks like on TV and Taylor cannot be relied upon to keep her shit together in a crisis. She was sobbing, I was trying to laugh. Love you, Tayl!)

For now, I'm aiming for sweet dreams and I wish Grandma and all my friends and family the same. Good night from Lark Lane.

Hospital

Quick update: no chemo yesterday, the platelet level was back up, but I had a massive blood clot in my arm around the mediport. I've been admitted into the hospital. We got the clot to break up. I will have to be here for 3 more days until they thin my blood out. i'm a little bummed and in a little pain, but we are dealing. St. Patricks Day: Lancaster General Hospital Style.

p.s. - we shaved my head on tues.

Meet the Girls

When Chris and I typically refer to "The Girls" we mean the K-9's. Barlie is now 7, Molly (the terror) is 5. But since I picked up my wigs, there are new girls in town. I'm using the Original Girls for inspiration.

Here they are. I've named them. The one in the middle will be the "go-to" wig. It is exactly like a haircut I've had before. I think that's the one I will wear the most.

When I was in college and my girlfriends and I would go out, we would all pick different names. Sort of an alter ego. Or just a go to name and fake phone number we would spit out if a creeper wouldn't leave us alone. So my name was Sarah. Not that interesting, I didn't go with something sexy like Veronica or off-color like Bubbles. But Sarah seemed to work. I'm calling the middle wig Sarah.

The one on the right is wig #2. It's longer, like chin length. We're not going to be fooling anyone. On TV, I'm going to go from pixie to chin length in an instant. However, I thought this one was Rachel-esque, from Friends. If only my face would look like Jennifer Aniston's when I put this wig on - that would be a transformation. So this is Rachel.

Then there is the red one on the left. It doesn't look like much there (I put it on a water bottle - I didn't need three fake heads at home), but when I put it on - it is something! My eyes literally change color. So this will be the play thing, sassy and a little naughty. So given it's color and "attitude" I'm naming this one Molly. I think the dog would be honored if she understood. She's not the smart one though, that's why we always say to her "You're so pretty." So Molly it is.

Then Emily Forrey signed me up at this wonderful organization that sends awesome headwraps and good wishes to women experiencing hair loss because of illness. So I have my first stylish wrap ... in pink no less! Right up my alley.

I think we're going to be okay.

Hair Today, Gone Tomorrow ... or maybe Wednesday

I feel like I'm flexing the muscles of my skull in an effort to keep the hair attached. It's not working.

The shit is falling out. And I think it's hysterical. If you put your forefinger and your thumb together on a bit of hair ... and pull ever so slightly ... you end up with a good amount of hair between your fingers that was seconds before attached to my head.

I showed Chris on Friday. I said, "Look at this! (pluck, gasp, giggle!)" Chris said, "Wow! That's crazy. Can I try?" And he did ... in a different spot at least. I think we're having fun with it.

So this is what the drain looked like this morning.

All that hair, just from my head. My pillow is not much better. I was only in the shower for like 3 minutes because the more water I was running on my head, the more hair I could feel sliding down my back. Better to get in and get out. 

We were legitimately trying to go to church this morning - it being Lent and all. Plus I have so many wonderful friends at church who check in on me and want to know how I'm doing. It's like religion with a side of social hour.

But after my mere 3 minute shower, I knew we were never going to make it to church. My gut is simply not cooperating. I had terrible stomach pain again. So I retreated to the bed, curled up in the fetal position and stayed there for hours. I didn't even blow dry my hair - which means the little bit that I still have is sticking straight up. I wasn't too disappointed about not drying it though. Whenever I hold the dryer in one place for too long, I notice the hair that was there drifting off in the other direction. So, no Church, no primping, lazy day. I might try to keep what's left on my head for work Monday and Tuesday. After that, it might be time for a razor. Eek. (so not there yet emotionally)

But thanks to my fabulous friends I have food and delicious cookies to eat. Tons of gossip magazines. Dozens of hysterical greeting cards! (My fave is from Jamie Burkholder)



In addition to reading my cards ... Chris and I did explore The Story of Farts today. Marla and JR Rogers sent the book The Gas We Pass after I mentioned the Everyone Poops book. I didn't know it had a gas companion, but it does!! Marla said every good home library has this book! Plus she added the Holes in Your Nose to our collection too. I'm putting them both on the Medical Book section of the shelf next to Chris' Anatomy and Physiology text books.

(Has another sister book called Breasts!)

The one thing the nose book doesn't mention is the constant dripping during chemo. But have no fear, Stephanie at the wig shop - a 3 year Breast Cancer Survivor - filled me in. She urged me to keep a tissue up my sleeve. "Like your grandmother used to." Well, Great-Grandma Phyllis did always have a tissue up her sleeve. When I asked why, she explained that the HAIR IN YOUR NOSE FALLS OUT TOO! So there's little there to catch the snot. Hence the tissue. And she's right. I'm full of dripping snot!



Rambling Thoughts

Today was a good day. I feel okay. I think having some time off from chemo while my platelets bounce back is good for my body. It's just my head I need to work on.

My mind just doesn't stop. I wish I could just be calm, let all the thoughts be quiet. But I'm finding it's hard. First, I just think about what has to be done today. Then I think of things I might be able to accomplish if I'm feeling good. Next I think about when would be a good time to nap. I've never napped as an adult, but there is something wonderful about crawling into the bed in the middle of the day for a little recharge. When Chris is at work and I'm home, the dogs and I crawl in. Sometimes I sleep the whole day until Chris comes home from work. I feel like a bum when he wakes me up - he's done a whole day of doctoring and I ... well ... snuggled with the girls.

At first though, I was so tired I would just fall right to sleep. Now I lay there and think about 57 different things all at the same time. Sometimes I'm impressed by how many thoughts I can have simultaneously. Like I can have a song in the way back of my head, I'm running through the To Do list in the middle part of my  brain and at the same time having a pretend conversation with someone ... all in my head. I really need to take a deep breath.

I like to say my prayers. If not for their calming effect, at least for the repetition. I hope God doesn't get mad if you fall asleep saying the Rosary. I don't know that I've ever finished the Rosary before falling to sleep. It's usually in mid-Hail Mary. But I think - as a woman - Mary must realize how tired I am and I don't think she holds it against me.

I think about things 5 years away. I run through our "potential" family. When this is over, will my uterus cooperate? Will we be so nervous that instead of a baby, it will just be Cancer The Third. Should we just book plane tickets to China ... see the Great Wall, pick up a little girl and call it a day? We adopted our dogs and I love them more than live itself. I'm sure Chris and I could be the Lancaster version of Brad and Angie (ich, I don't like her ... or that stupid leg) and host the United Colors of Benetton on Lark Lane. But do you see how crazy I go and how quickly I get there?!?

Take a deep breath, Mer. Left foot, right foot.