What's the plan from here?

After the Holy Six Pack of Platelets (see previous post), my platelet count and all of my blood levels rebounded nicely. I guess. I thought I'd be "too sick for chemo" for another week. No problem by me. But, alas, the labs were good and chemo called.

So to recap, at it's height the hCG # was 64,000. Last week it was 9.9. Single digits. So low they start marking decimal points. That's some amazing medicine!! We need to get to zero - less than 2 is actually the measurement. While it seems like it's so close, we've been here before. In 2009, I was <2 for two weeks and then it bumped up to 2.4, resetting the "3 consecutive zero's" count. So this end game can get a little tricky.

Plus, Dr. Evans explained it like this. The number drop is important, but the percentage is even more so. For a while, the hCG level dropped by more than 50% - an astonishing drop. The decrease from 11 to 9.9 is still good though - a 10% drop. But as you can see, it starts to slow down a bit. Like on Biggest Loser, when someone is 500 pounds they drop the first 50 lbs in no time. It's that pesky last 10 pounds that takes forever to shave off. We're in the 10 pound range ... and by golly if I could run for miles and do hundreds of sit-ups to get to <2 I would. It's just that that won't help AND I get winded just going up a flight of stairs. So it's up to the chemo.

Had infusions last Wednesday and Thursday. Nauseous all weekend. Big infusion coming up this Wednesday and more blood work. Keep your fingers crossed and the prayers coming. I'd like to say we're halfway through (my end-game was July 4th) but Dr. Evans cautioned rushing it (she said Labor Day - Bah! Humbug!) Left foot, right foot, left foot, right foot. I think I can see the light at the end of the tunnel. Can you?

I was so cold the first time I was in the hospital, they put warm blankets over my head. Beth says I was envoking Mother Teresa with the blue stripes. I know one thing: I ain't no Saint.

  Not that wrinkley yet either. (May she rest in peace.)

Catching Up

Hi, sorry. You would think blogging would be easy ... but it's not. Every time I sit to write a bit something else comes up. Or a dog nudges my arm wanting a belly scratch. It's hard to type and belly scratch at the same time. I've tried.

I survived the hospital. That was two weeks ago now. I did have a platelet transfusion. It's a little less than a full blood transfusion but Chris was concerned because there's always a risk of getting some "bad blood" when they transfuse. I ended up with what they call a Six Pack of Platelets - meaning it's six different donors - only upping the changes someone has TB. But my girlfriend Jeannette calmed my fears by calling it the Holy Six Pack - she says only holy, happy, clean people donated for me! If only it was a six pack of Miller Light I'd be fine.

My Aunt and Godmother, Diane, my mom's second sister came from Florida for a week to help me. What a privilege to have her take a week off a work to tend to me. We talked about all sorts of things, solved some of the worlds problems (including how to run a hospital floor efficiently - we're convinced we can do it better). We laughed and watched TV, tried to go for lunch one day when I was home until I threw up in the car on the way there.

I didn't say a word, Aunt Di just went about the tasks of making sure both Chris and I were fed, the laundry was done, the dishes cleaned. I felt so loved and so enjoyed her company.

Plus, Di has always had a great sense of humor which came in great when we cleaned out the laundry area. Where else would you put the fur hunting cap with flaps ... but on your head.

Classic! Now that's a look!

If we can't have fun with Cancer - no one can!!

Thank you Aunt Diane. You were wonderful and I appreciate your help more than you can know!

"It feels like I'm choking on my tongue."

That's what I said to Chris when I called him around 8:30am Monday morning.

For days, my throat and my mouth have been in an uproar. I've lost my voice, I have sores on my cheeks and tongue. I'm full of phlegm that I can't seem to get out of my nose or out of my throat. And then Monday morning I felt like I was drowning in my own saliva.

When I woke up, I aimed to do "the routine." Brush my teeth - get the gunk off that builds up so quickly when your mouth is full of evil, swish with the Magic Mouthwash to kill the bacteria, take a Musinex and something for the pain. As I tried to start all the things that I thought would help, I could instantly tell I was not well. I felt like I couldn't swallow.

I could swallow. though. I was drinking small sips of water. But the thought of opening my mouth wide enough to get the tooth brush in was too much to bear. I would have died to take a Vicodin but the pills are huge and I didn't think it would go down my throat. The Magic Mouthwash would have numbed it all. There's a tricky thing about feeling numb though. To me, it feels like your mouth is swelling - like when you have novicane at the dentist. As if your lips are twice the size and you can't form words correctly so you sound drunk and most of all, I feel as if my tongue is twice the size. This was the moment when I had a little panic attack. If I took the Magic Mouthwash it might curb what I was feeling, but I felt like it also might make my tongue too big for my mouth and close off my throat. The last thing I wanted to do was choking on my own tongue. How ironic would that be?

So I called Chris who was in the Operating Room that day. To my surprise, he picked up and said he was in between cases. I explained my symptoms and he said what I dread most, "You should probably come to the Emergency Room." As a doctor who is on call nearly every third weekend and taking pages from hypochondriacs who need a refill of their narcotic pain medication only on the weekends, I've been privy to this sentence a lot. Some patients call and Chris listens calmly, tries to troubleshoot over the phone, but sometimes reverts to, "I can't diagnosis this over the phone. If you have serious concerns, I can meet you at the Emergency Room." This is when you distinguish the fakers from the honestly sick. No one wants to go to the ER, so if they're not REALLY in need, they usually say thanks anyway and hang up. It's the people who are really sick that say, "I'll be at the ER in 10 minutes."

When Chris said, "Go to the ER," it was do or die time. I HATE the ER. I HATE the hospital for that matter. (but what I hate even more is that hospitals are trying to make it the ED - for emergency DEPARTMENT. Eveyone knows ED is for Erectile Disfunction, but assholes who runs hospitals listened to some marketing asshole who makes stuff up just to bill and now they're pushing the ED. Bullshit. And that's how I feel about that.) But I knew, while sitting in the fabulous lime green leather arm chair that's in my bedroom, I better go to the ED or I might choke right here. (I probably wouldn't have choked. That's the drama in me. But I knew I couldn't continue to do what I was doing because I was scared and in pain. It wasn't really impending death, but it was enough for me.)

Chris says he can't come home to get me. He has a patient under anesthesia. He calls his mom. Marcia is on her way but it will be a little bit before she throws clothes on and gets to our house. He calls the neighbors, Beth and Nate, who are home and rush over. THANK. GOD. FOR. BETH. In every crisis, she's there. Beth calms me down as I slowly pack a bag. (I'm no fool, I packed 4 pairs of under ware, 2 pairs of sweats, my phone charger and my toiletry bag. There's no conditioner in the hospital shower.)

Just minutes later Chris pulls up like a bat out of hell. His case wasn't going just yet. He had enough time to swing home. He thanks Beth and as we pull out of our neighborhood we pass Marcia who is just minutes from our house. It was like Call Out the Calvary - we have a situation! And all these wonderful people come. How lucky am I?

In the ER, they stick my like 37 times. My veins are shot at this point. One nurse is sure she's got an IV started and it clearly is not. No problem, the CAT scan tech fixed it up in 2 seconds flat. I swear I will write a book just about the hilarity of a hospital: the different personalities, the varied skill levels, the smiles versus the attitudes. I don't know how health care people do it. I would kill myself right there.

The verdict: bad mucusitis. (No Duh!) I wasn't going to choke on my own tongue, but they helped me along the road to feeling more comfortable (ie: serious drugs! Love the pain meds!) But after drawing my blood finally, it comes back dangerous low in three different categories: barely any white blood cells - meaning I could pick up TB from the germs on my cell phone; barely any red blood cells - meaning the blood is carrying little oxygen to my brain, maybe that explains some stuff; and platelets of 6!

Let's have another platelet lesson, shall we? It's a component of your blood that helps you clot. At the lowest last time, it was 37. They'll give you chemo if you can get it up to 90. The normal level is 120. So mine was mother fucking 6! Really?!? I hate platelets.

The next thing you know the "concierge" is saying, "Congratulations and Welcome. We have a room waiting especially for you. We hear you might be staying with us for a bit. Give me your Hilton Rewards Card and I will credit you the points." Well, not really that last part. He also didn't ask if I wanted an Ocean Front room. Thankfully this time though I didn't have a Cemetery View room. See, things are looking up.

The Not-So-Slumbering Groundhog

There is a place called the Slumbering Groundhog Lodge of Quarryville. It's a mystical spot in the rolling hills of Southern Lancaster County nestled along the Octorara Creek which lends it's name to the most famous member of the Lodge: Octoraro Orphie.

While most of the members of this illustrious group are men, many high profile professional who throw care and caution to the wind to be a part of the prestigious club, Orphie is not of the human variety. He's the groundhog. And he's stuffed. And these intelligent men have use this stuffed groundhog to foretell the weather for the last 104 years.

I fished up some articles to display the point:

"Each member has their specific duty. Some of these are Nottingham Hole Checker, Faulty Fuse Finder, and Magistrate of Marble and Garble. Whatever else the slumbering Groundhog Lodge stands for, aside from the preservation of groundhog lore, it is with a grain of salt and a sense of humor."

Another Bloggers Take on the Lodge
What Quarryville Has to Say About All of This

News 8 covers this hilarity every year. Since the first year I was assigned to be the reporter at the Lodge (at 4 am mind you!!!) I have volunteered for the gig. It's so much fun, the men are wonderful and hysterical and I love people who don't take themselves too seriously. I should add that despite my often feminist stance on things, this lodge does not have any female members. On the infamous Groundhog Day, no women are allowed in the warm, comfy lodge. Wives and daughters and other female spectators stand outside in the February 2nd cold. But yet, I'm allowed in ... because I'm a member of the Press. (I knew that Press Pass would get me places in life ... I just never thought it would be the Slumbering Groundhog Lodge!) So make me feel special and I'll eat right out of your hand.

It was a poignant Groundhog Day for me this year. I woke up at 2am to cover the festivities and that's when I peed on the stick and it said (kinda) "Pregnant." I went to work that day thinking I might be with child. (Which is the only reason I declined a sip of the clear mystery liquid in the mason jars some of the men had been fermenting all year.) I consider Groundhog Day, D-Day for Cancer #2 - but neither the men, nor I at that point - knew that.

Such a fun time, such wonderful friends. They found out later that I'm sick. And have been equally as wonderful ever since. I received a Get Well Card signed by dozens of the members. And then I woke up to this on Easter Morning!

There's no mistaking it: That's a Groundhog with a Top Hat on and it could have only come from one place! The Slumbering Groundhog Lodge! With tulips to boot! Thank you so much. My new Groundhog will guard me while I heal and it makes me smile every time I see him!

ugh

The last three days have been bad. Losing my voice was just a precursor to the beginning of Mucusitis. Again, the chemo attacks mucousal membranes and my mouth is one of them. All that soft pink tissue that makes up the lining of your mouth ... it's under siege right now. It's certainly not as bad as it was in 2009, but the goal is to keep it from getting that bad. They had to admit me into the hospital then because I couldn't swallow. I was on an IV "liquid food" diet for two weeks. For now, I'm just on mush. Pastina, apple sauce, protein drinks and ice pops. The cold of the ice pop helps ease the sores on my tongue and the sides of my mouth. I can't even open my mouth wide enough to see in the back or to stick my tongue out all the way. So technically, I can't even see if there are sores, but let's be honest, I feel them. So I eat an ice pop, wear a warm beanie on my head and sit with the electric blanket to keep me from getting the chills.

Alright, enough complaining ... let's keep our eye on the prize: the numbers! My number on Wednesday continued in the right direction - dropping from 67 to 28! Boo yah! We ARE killing cancer! I was so pleased with that drop. It's the only thing that keeps me going. If that number goes UP for some reason, you can find me hanging from a tree outside. It's the only thing that keeps me focused on getting better and helps drown out the pain. So while the hCG # is nothing short of beautiful, three other numbers were nothing short of too low to be healthy. My white blood cell count, red blood cell count and my platelets (those damn platelets again!) are all too low to receive chemo. They wouldn't infuse me on Wednesday, just some booster shots and get back to bed. There's another thing (I use that word loosely because I really don't know what it is) some "thing" called Neutrophils and they are dangerously low too. That's actually a big problem. In addition to the blood levels being low, with almost no neutrophils I could pick up pneumonia if the dogs sneeze. It just makes me very vulnerable to germs and infection. Isn't cancer fun?!? Kill me now. I spend more than half the day in the bed - thinking about all the things I could get done. It's an inactive state of frustration that is driving me mad. But "the body needs to heal" and other such things my mom tells me to calm my fears and frustrations.

Speaking of my mom, she and Bruce came to visit for Easter. While I slept, they turned into little garden gnomes and planted nearly all of my pots, less for the two that Jeannette and Beth planted when I got home from the hospital. I called those girls my Garden Gremlins, but I feel Gnomes is nicer. It just doesn't have the actually alliteration sound, you know, because of that silent G and all.

Either way, here they are at work.

Doesn't my mom look bad ass throwing the mulch out of the back of the pick up truck! Hard core gardening at the Cooke House!

She and Bruce planted beautiful flowers around my rocks, give the place a little color. Marigolds in front and get this ... flowers called Cosmos in back! How appropriate!

All my pots are saying, "Spring is here. Meredith should be out to play soon!"

Peach Fuzz?

Ok, today I am actually a mute.

For some people, they've been waiting for years for me to shut up. Well today, you got your wish. This mouth is giving me a really hard time. I am voiceless right now. My dad called and it was like whispering sweet nothings to him over the phone. I could not project anything audible. Thankfully, he's like me ... he can talk a lot ... so it was a good, albeit mostly one sided conversation.

Given my near-Helen Keller status, I haven't been to work in two days. Mondays and Tuesdays should be my best days and I've making it to work a lot of them. No go this week. What is the point of trying to interview someone if you have no voice in which to ask the questions? Plus, I'm big on the phone at work and I sound like a scary stalker with a breathy voice on the other end of the line. I feel like the potential interviewees will wonder why I'm not asking, "What are you wearing?" rather than, "Can we come interview you?"

It's me and the beasts at home. I'm reading some good books, trying to stay away from the Real Housewives franchise. (That's not true, I hate that show. All the women do is yell at each other. It makes me nervous, like actually anxious watching it.) The girls in my 'hood would make a killer Real Housewives of Lancaster County though! We could have buggy races and throw whoopie pies at each other. It's an untapped resource right now. I think we could make it big.

The only real thing that is big right now is my head. I have lost a total of 4 pounds on cancer. Like really??? You would think I could at least waste away to nothing just in time for bathing suit season. When instead I drop 4 lbs and that was probably just the weight of my hair! So my noggin looks big and it's got some growth too. Peach fuzz. Well, half a scruffy man's beard and half soft peach fuzz. There are two distinctly different kinds of hair growing up there. And after wearing my wig for Easter Dinner, I have a small red rash to go with it.

(Sidenote: I bought 3 wigs. I thought it would be so fun. If I had to do this again, I'd save the money and get just one that does not have bangs that poke you in the face. They are not as much fun as I thought. Plus, they are hot and uncomfortable. Taking it off at the end of the night is like taking off your bra after a long day. You just have to rub around and let the area breathe!)

While there are no Easter Bunny Ears here ... can you see the fuzz?

I've also kept my eye lashes and eye brows so far. Definitely a plus. My eyes are a mess too because they have a mucus membrane that the chemo attacks - not my best look but this is what cancer does to you. Damn Cancer!

Happy Easter! From the Egg Head

I tried to be like the Easter Bunny, but instead of having Energizer Bunny power, I was more of a Hibernating Bunny this weekend. So sleepy.

This is a tougher week, with Day 1 and Day 2 infusions, plus the Methotrexate shots. The shots are so easy that sometimes I forget it's poison. Kristen gives me two of the doses, then Chris gives me the weekend ones. Can you envision Chris coming at me with a sharp needle pointed at my ass cheek?!? I'm facing the other direction when he does it, but you can imagine he might get this look in his eye as he's lining the two up!! To be fair, he's so good that it doesn't hurt at all. He's so good when he puts his hands on my ass! (a little too much?? hehe)

So these shots are kind of a bitch because this drug is the one that causes the Mucusitis - which put me in the hospital for 14 days last time. We're managing it really well right now, but I can feel my mouth throb sometimes and I get nervous that I'm going to have a full blown problem. My first line of defense: sleep. When I'm asleep, I'm typically comfortable and not in pain. If I could sleep this whole damn cancer away ... I would. I never asked Dr. Evans about a medically induced coma while going through chemotherapy, but I might do that this week. Wake me up when my hair starts growing back.

Other than sleep, I have Magic Mouthwash. All I know is it has Lidacane (sp?) in it. In other words, my mouth goes numb and I can't feel a thing. Wonderful! Better living through chemicals. I try not to take this before I'm about to eat a delicious meal because I wouldn't taste a thing and I'd drool all over the plate. But for the occasional "ooh, my mouth and throat hurt" pain, I swirl up some of that stuff. It really is Magic.

This side effect is really just a lot of coughing and spitting and blowing my nose and losing my voice and having a sore throat. Really pretty stuff. But it could always be worse and we're doing fine right now. So while we were 67 last week - we're keeping our eye on the prize this week - and hoping for the best ... even if I hack up a lung before we get there!