5.6!!!

Oh, thank you dear God. The number was 5.6 - down from 20.9! The doctors feel like we are back on track! I feel like the weight of the world has been lifted off my shoulders.

Mom sent this to me at the begininng of the treatment and it's hanging on my fridge:
Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go.

I get so weak sometimes that I was terrified and disouraged. But all your prayers and well wishes helped lift me up. We're going to be okay and I have you all and Chris and God to thank.

A Positive Attitude

There are some silver linings to cancer.

I've lost 11 pounds. Another 11 and I'll be bikini ready. While I don't recommend cancer as a way to get to your fighting weight, I'm thrilled with the drop. Dr. Evans has noted my weight loss with a frown of disapproval. She said, "I need some meat on your bones if you get sick." I have plenty of meat left, mostly around my midsection. I refer to it as the classic "muffin top" but maybe it's baked goods made with meat - like mince meat pie around my gut.

The saddest part to me is while I'd love for chemo to help me drop the spare tire, it's my boobs that are suffering. I'm sure it's 5.5 pounds lost from the left one, another 5.5 from the right. It's an injustice of nature that the weight should leave the fun spot first.

On the upside, I was cold in the hospital so I might invest in one of these scarves.

I'm loving the rose tattoo on the woman on the left. Classy!

Another positive: I'm really catching up on my sleep. I feel like there are times when life just feels like a rat race. People say, "I'll sleep when I'm dead." Sometimes it seems as if that's the only time you'll slow down. I'm complaining about running around like crazy and I have no children. I can't imagine the working moms juggling three children do it. Do you ever get out of the car? Now, I barely get IN the car. Running errands is a massive accomplishment, going food shopping is like a marathon for me.

So the snuggly time on the couch with the girls is a welcome change and a much needed rest. When I think back to this illness, this is what I will remember. This is what having cancer looks like for me:

I've had this couch for 10 years and after all this laying down, I've definitely put a dent in the cushions. At least Barlie keeps me warm. I have a kink in my neck from watching TV in the same position. I'm thinking of moving the couch to the other side so I have to look to the right instead of the left.

Well, it's a big night tonight. Chris and I have tickets to the Lancaster Chamber of Commerce dinner with guest speaker Former British Prime Minister Tony Blair. I plan to dress to the nines and wear my best wig. I've been resting for two days just to save up the energy to walk from the front of the convention center to the back where my table is. And it's a big day tomorrow when we get the latest blood work. I think it's going to be fine. Will keep you posted!

Bad Blood = Weekend of Waiting

It's really been going down a lot, the cancer number. But we hit a snag on Wednesday. The beta hCG number increased from 9.9 to 20.9. Considering it WAS 64,000 this number pales in comparison. The question now is why?

There are several possible answers.
1) I didn't have chemo for three weeks around the time of the last hospitalization. That could account for the increase, but we did have a decrease since the hospitalization - weird.

B) The cancer is no longer responding to the chemotherapy and could be growing rather than shrinking.

4) The Super Moon last night has thrown everything out of whack - like a hospital full of crazies on a full moon ... but a Super Moon!

I'm pretty sure it's Reason 4) using the deductive reasoning of my journalism degree.

So without knowing for sure, it gives an insecure patient who has kind of had the shits of this already, plenty of time for conjecture and non-scientific guess work. The doctor in Lancaster called the doctor in Boston who ordered a CATScan of the chest and an MRI of the uterus. He used the words "possibly drug resistant," "surgical resection" and "might have to take the uterus" as POSSIBILITIES in the conversation with Lancaster doctor. She passed it along to me and all I heard was "take the uterus" and then I pretty much checked out.

Well, that defeats the purpose of being cancer-free and hoping to get pregnant. I can't very well let the embryo piggy back on my kidneys for nine months. That phrase "take the uterus" hurt like a ton of bricks. But as everyone keeps saying "Don't worry. It will be alright. Everything will work out. I just know it will be fine. Hang in there." (Should I keep going? There are like 75 other phrases in the same genre.) I try to take each of those sentences in and digest the words and feel their meaning and make it part of me and part of my mission to move forward with a brave face.

But it's really hard.

I'd really like to keep my uterus.

I can see now it would be nothing short of a blessing to be pregnant and carry our child.

It might work out like that. It might not. I have a lot of emotional work to do either way.

On Wednesday we'll draw the beta hCG again. That will tell a lot. Is it Wednesday yet?

************************

Not to be a total Debbie Downer ("Waa Waa!" as Holland would say), I had a great night on the town for Ronda's 40th Birthday Celebration. A Civil War Murder Mystery at Bube's Brewery! I rocked the red head!

Ronda, Joe, Julie, Michael, Me and Beth
BTW: The butler did it.

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!