It's Like Hershey Park Without Hilary

Good Numbers! Good Numbers! Good Numbers! It's a Christmas Miracle. My hCG dropped from 39 to 7.5 - what a blessing! All the prayers really paid off.

This is obviously good news. If the number went up again, we were in trouble. Talk of another PET scan, changing chemotherapy, even stopping chemo for a little bit to let the cancer grow so we can find out exactly where it is. As you can imagine, when I put my head on the pillow, all of those options race through my head. I have a uncanny ability to go from zero to sixty in 3.2 seconds. While I try to reign in, it difficult not to speculate what we would have to do if cancer took over any of the four major metastases sites; lung, brain, liver or kidney. Ugh.

I mention Hershey Park because this is like a total emotional roller coaster. My family, friends and I put all of our faith and hope in this number. When it goes down we are elated. When it goes up we collectively panic. Just up and down, and up and down. I feel a huge sigh of relief when there's good news. I feel like there's a rock on my chest when there is bad news. And I know a lot of you do too. It really is a roller coaster.

The only roller coasters I like to ride are with my sister-in-law Hilary for her birthday. One her favorite events is to take the whole family to Hershey Park and ride the roller coasters. Be clear, Noonie (her middle name and nickname) is not even five feet tall, and she can't see well, hear well or walk well. But she can ride a roller coaster like a champ! It's always so heartwarming to see her smile as she loads into the car. She often rides with her mouth wide open the whole time. I'm afraid she'll catch bugs. (But really my mouth is open the whole time too, because I'm screaming at the top of my lungs.) She rides next to her brothers or one of her nieces and nephews. I think a lot of people really enjoy roller coasters. Yet, in my mind, Hilary takes the cake.

While those Hershey Park roller coasters are a blast, this hCG roller coaster is a nightmare. It doesn't matter how tall you are or how loud you scream, I'm on the ride whether you like it or not. I just want to be done and get off. I really do. But I know I'm not really on this roller coaster alone. There are dozens of you riding this ride with me. Even Hilary is sitting in the car next to me. And instead of laughing like she does at Hershey Park, she sitting next to me on this roller coaster praying. She's a darn good prayer ... like so many of you. Eventually this cancer coaster will pull back into the station and we will all get off. We will all breathe a collective sigh of relief and say a prayer of thanksgiving. And finally Chris and I will get back to living life on our terms. In the meantime, I'm holding on with both hands and screaming at the top of my lungs.

There's No Nice Way To Say This

This blog is real. The things that are happening to me are real. And for some reason, I feel compelled to share.

I think part of it is the journalist in me. It is the truth. These are the facts. I think the other part is if you are taking the time to read this, I want you to understand what cancer is really like. So I apologize in advance for this post. But it happened.

A few weeks ago, when I was really sick, I had an accident. That's to say I didn't make it to the bathroom in time. At 32 years old, I suffered a total loss of bowel control. In other words, I pooped my pants. Alright, let's just call it what it was: I shit myself.

Looking back, it was a perfect storm. I was taking pain medication because everything hurt so badly. So I took some Senokot so I didn't get all backed up. I was having belly pain anyway, like a constant, low grumbling. Not like I was hungry, just a dull, all the time ache. Then my blood pressure was very low. Standing up quickly became a dangerous game. It all led to this one moment.

Chris had gone to work, Marcia would be over in just a little while. It was that sweet spot of time, like 20 minutes, that I lost it. Of course. I could tell I had to go to the bathroom. I sat up in bed slowly. But because of my blood pressure, I'd had a routine: go from laying down to sitting up and sit there for 2 full minutes (which is like an eternity when you are looking at the clock), let the blood equalize in my body. Then stand up next to the bed and wait two minutes. This way, if I was going to faint again at least I would be near the bed, not near the flagstone floor in the foyer which would surely leave me with a brain injury if I hit the deck there. But there was no time for this routine. I was in bad shape.

I sit up and think quickly. Just run to the bathroom? Stand slowly and clamp your ass cheeks together as hard as you can? I was in panic mode and sort of did both. I was wearing my muumuu - the big pink nightgown I bought for the first surgery. I get up and immediately know this is a bad situation. I hold my nightgown over my ass, walk as quickly as I can to the bathroom knowing I'm leaving a trail behind me ... and it's not bread crumbs!

Mortified, I make it to the toilet bowl. I am covered in shit. I look like a 3 month old who just had a diaper explosion. Except, I'm a 32 year old grown up with a Bachelor's Degree. I am sobbing. Just sobbing. This is the lowest of the low. I am alone in my bathroom and embarrassed. Then just as quickly as I started crying, I had a sort of an out of body experience. I was standing at the doorway of the bathroom, looking back at me on the bowl, covered in shit and crying ... and I just started laughing.

So now, I'm crying and laughing at the same time and making that snot that just drips out of your nose in streams. Like I care about the snot at this point! I reach for the toilet paper to wipe my nose and I notice poop on my forearm. How the hell did it get there? So now I'm laughing and crying even more. All alone. To myself. Hysterical.

I try to compose myself and think. I take my shit stained panties off and throw them in the tub. I should have just thrown them in the garbage but that was across the room. At least I could reach the tub from where I was sitting. Then I proceed to take my nightgown off. But I have to lift it over my head. It's covered in shit. So now, after lifting it over my head, I am covered in shit. Like there is poop on the back of my bald head. You can't make this stuff up.

I take two steps to the shower, put the water on super hot and just stand there. In like 30 seconds, I'm nearly clean and back to being a human being again. But let's be honest, I shit myself and cancer sucks.

What do you do after you shit yourself? You call a friend who you know would clean up your shit. Lucky for her, I called Katie. The first words I said were, "I need you." Then I followed that up with a good reason why, "I just shit myself." Needless to say, she took off a day and a half of work and drove 5 hours and was at my bedside later that day. In the meantime, Katie (in Connecticut) called Jackie (in New York) and Jackie deployed Angie (in Lancaster). That is how a village works. Minutes later, Marcia walks in and, as always, makes everything okay. Then Angie arrives and before I know it, you almost can't tell I pooped all over my beige rug. How many people do you know who would come over and clean up your shit? I had two in a manner of minutes. These people are angels on Earth. They have no idea what it means to me.

I wore Depends for the next three days. There's nothing sexier than being bald and wearing Depends.

Bad Numbers. Haven't We've Been Here Before?

I love alliteration, as does my dad who refers to himself as Dapper Dad and me as Dear Darling Daughter, D2 and 3D respectively. (The rule is a man's number of alliterations are listed after his initial. ie: Christopher Cunningham Cooke is C3. And women get the number upfront, hence 3D. I don't know how he comes up with this shit. He has too much time on his hands! :-)

Tuesday is blood day and it lends itself to a series of alliterations. I would prefer most Tuesday's to be the easy go-to Terrific Tuesday, or even Tremendous Tuesday. Would I be going to far by hoping for a Titillating Tuesday? Probably.  

Then there's the other side of the coin. A classic Terrible Tuesday. Perhaps a Troubled Tuesday. When it's really bad (and you're a fan of the hit Showtime show Homeland) it might even be a Terrorizing Tuesday. (But don't worry: Claire Dane's character is on the case, even though she is bi-polar and sleeping with the main informant. It's that kind of show!)

I won't be overly dramatic (have I ever been overly dramatic?? ;-) This is Trouble Tuesday. My beta hCG # jumped from 4.5 to 39. Ugh. That fucking number is going to be the death of me - figuratively, not literally, I hope. It's a disappointing jump. But we have a plan. I like plans. Get chemo tomorrow in the office as scheduled. Hold our breath and pray even harder for better numbers next Tuesday. If it goes down - great. In the words of Bush 43 "Stay the course." If it goes up, like our taxes will if we hit the fiscal cliff, I'll put my head between my legs and kiss my ass goodbye. Just kidding. Then they will scan me again, including my brain (scary) and maybe switch chemos. Not outta options yet. That's the sentence I'm most afraid to hear, "We're out of options." I think unless we rule out a brain transplant, we still have options.  

The Hospital Needs Help

Tuesday and Wednesday, I was successfully able to have chemo. It was just actually getting the chemo that was a drag. This is my third admission into the hospital for the 30+ hour infusion. Well, LGH is three for three.

Let me be clear, the nurses, aides, and staff are wonderful, diligent and take very good care of me. However, there's a very serious problem getting the chemotherapy to the floor. The first two times it took more than 5 hours to start the infusions. This last time, in an effort to speed things up, I arrived an hour earlier. This was no help and simply prolonged the start of therapy. I sat for 6 and a half hours before chemo started dripping.

I am going to try to explain what happens. I don't really know myself, but it's a good job for an investigative journalist. Lancaster General Hospital doesn't mix the chemotherapy drugs at the hospital. I think I've mentioned before, LGH used to stand for Lancaster General Hospital, but after a marketing update, LGH now stands for Lancaster General Health. That way all of the affiliated buildings and doctor's practices it now owns can all be under one convienent umbrella. They didn't even have to change the initials, so a white, oval "LGH" bumper sticker, like an "OBX" one, is still valid. Why people have bumper stickers for a hospital as opposed to a vacation destination is beyond me. But to each their own.

One source told me, the hospital used to mix chemo in the actual hospital but someone made a mistake. In an effort to make sure there were no more mistakes, apparently the hospital moved the mixing operation to the Lancaster General Health Campus - a large office complex across town. Fine, I'm all about checks and balances - and getting the right kind of chemo - but this across town part seems to be part of the six hour problem.

It takes just minutes to mix chemo. I know because I watch Kristin do it at Dr. Evans office all the time. Like minutes. But let's just say it takes 30 minutes to check and re-check and check again, that still leaves a 6 hour delay. The next problem is getting the chemo from the Health Campus to the hospital.

I just google mapped it. It's 3.2 miles from the health campus to the hospital. An average of 9 minutes with traffic. It should actually take more time to drive the drugs from one location to the other than it takes to mix it. Marcia has been by my side all along for this hospital admission. She's as flabergasted at the delay as I am. And she's a spitfire when it comes to doing the right thing. The very first week, Marcia graciously offered to drive to the Health Campus to pick up the chemo to get it to me faster.

Mixing and moving the drugs seems to be the first problem. Then, there's Pharmacy. Apparently, the Pharmacy Department has to sign off on the chemotherapy before it makes it up to the 8th Floor. Again, I don't want to die, so please "protocol" the shit out of this transfer. Just speed those protocols up.

Do you want to know how much "protocol" Kristin has? I show up at 9am, she accesses my port at 9:02am, the chemo starts dripping at 9:04am. She's prepared, thorough, detail-oriented ... and fucking speedy.

Kristin had even anticipated that the hospital would continue with this delay. That's why she sent the chemo order on the Friday BEFORE a Tuesday admission. Yet, when I showed up, they couldn't find the order. First assumed it must have be a my oncologist's office's mistake. What's the first thing to do? Call Dr. Evans. When in doubt, bug the doctor - even if she did everything right the first time.

When Pharmacy says it needs to know where we got the chemo recommendations from, I nearly lost it. The nurse said to me Pharmacy needs an article where this dosing is listed. I am sitting in a hospital bed, still not hooked up to chemo and now Pharmacy wants me to dig up a fricken New England Journal of Medicine article that says this is this and that is that. How about this? My oncologist ordered this dosing. The buck stops there. Just fucking fill the order and get. it. to. the. floor.

Alright, now I need to take a deep breath. Chris steps in. He's on the phone, in the hospital library looking up a god damn article, then down in pharmacy trying to get answers about this massive delay. What do patients who do not have doctor husband's do?

Marcia brings up good points with such class. She asks, "Do all the patients who come here have to wait this long for chemo?" Good basic question. No answers. "Well, you are three for three. This has happened all three times. That's 100%."

You know what else is 100% though? The love and laughter of my family. I would sit for days in a hospital bed if Chris and Marcia and my sister Ashley and her husband Arty were with me. There's a long list of people who could keep me occupied. And thankfully a lot of them have helped me laugh my way through this. Otherwise, I'm sure I would have taken a long walk off a short pier by now.

Thank god for a sense of humor, because I needed it two weeks ago. Let's just say, it was a shitty situation. :-)

The Dogs

If you have children and you've told me a story about them, I've probably followed up your story about human children with one of my stories of my dogs. It's a problem, I know. A spit-up story about Noah, my best friend Jackie's adorable son, would undoubtedly be followed up with a story about when Barlie ate the field grass and then puked it up on my Persian rug. An endearing story about how our cousin Nancy Lynn's son's has trouble getting the puck on the ice rink could surely be followed up with me explaining how Molly has trouble fetching the ball then actually bringing it back to us so we can throw it again.

You get the picture. We're a little dog crazy. We're seriously blurring the lines between humans and K-9s. And to be honest, I don't really care. Barlie is my first born. She's my baby. Then we thought we couldn't get enough of a good thing and got Molly - who is a terrorist. But still so soft and sweet, we can't help but love her even though she puts holes in all our pillows.

So when I started to say, "I can't handle the dogs right now," you knew something was bad. Really, reflecting back on last week, it was me who was bad. I was tired and weak. I was in pain and couldn't move, no less react quickly. For days I was saying to Chris, "It's too much. I can't do them right now." The barking would give me an instant headache. It was no more barking than usual - the mailman, the dry cleaning pick-up lady, a squirrel right outside the window taunting them - but it just got to me more easily. And the people - there are so many of them - loved ones, friends, generous family members who stop by to help. It's just that you need to manage my dogs when someone comes in. It only take a moment, a treat to satiate them, a scratch on each head and then they are bored of you and collapse on the floor like they've been shot. It's just that I didn't even have it in me to do that much.

Then the tails. I'm not even sure whose tail it was the last time. But one of the dog's tail knocked over a glass of some liquid or another twice in 48 hours. The first time was a glass of chocolate Ensure that ended up all over Katie's latest needlepoint. She was so gracious about it and we spot treated as best we could. But I could see it was stained and I felt bad and then mad and frustrated. The next accident was just waiting to happen. There were five people in the den. I was sitting under a blanket on the couch. Hilary was happily eating a McDonald's hamburger. But I could see Molly eyeing that patty up. I could envision Molly disregarding Hilary and grabbing the hamburger right out of her hand. While I'm worrying about that on the inside, a dog tail does it's dirty work right in front of me, knocking a glass of water all over the electronics; my i-pad, my camera, I saved my phone at the last minute.

That was the point of no return. I just couldn't take it anymore. I cannot do everything and I certainly couldn't get rid of cancer and manage the dogs and the people all at the same time. Something had to give. It was the dogs.

We needed doggie help and I didn't know where to turn. But I knew I needed a break. While I'm trying to think of a plan, I'm simultaneously thinking about all the mothers who battle cancer. They're fighting the same disease and maybe have 3 kids at home. How do they do it? What am I complaining about? Do the moms send their children to a kennel? Does Grandma come pick them up and give the mom a break? Who knows. All I knew was I needed some help. Chris called AJ and Mary Ann and asked if they'd take the dogs for a couple of days. They refused. So we did what we always do - hire someone. And our team of helpers went to work. Angie Speitel had the name of a great kennel nearby. Marcia worked her magic and got the girls into that kennel - even though it was closed that day and not taking any dogs. And then Chris scooped them into the car and off they went. I sobbed and sobbed and sobbed. Marcia and Katie rubbed my back and reassured me while I cried. I felt like the worst Mommy ever. Maybe this is why God took my uterus. I'm not fit to be a Mommy of dogs, how could I possibly care for human children?!?

They were really only gone for a day and a half. And I missed them so much. I realized the dogs behavior didn't get any worse. It was just my response to them that got worse. They are dogs; thousands - millions of people have dogs who are worse or better behaved than mine. I just have to learn to shake it off. I have to learn to relinquish the control. I have to learn to take a deep breath and know that it is all going to be okay. I have to learn to be calm. I keep wondering why God gave me this cancer, what am I supposed to learn from this. I just listed 4 lessons this cancer could teach me ... and even now, in Chemo Round #3, I haven't learned them yet. I'm trying. I really am. It's just really hard.

It was really hard being without the girls too. So on Monday morning, we picked them up from the kennel. Barlie was mad. Like really mad at me. She was barking in a different tone and sending her anger directly at me. Molly - as usual - was oblivious. It was as if she was just walking around muttering, "That was a fun field trip. Can I have a treat?" Barlie was looking straight at me saying, "I can't believe you did that to us! Don't abandon us again. I'm your first born, remember?" So, like all crazy dog people would, Barlie and I had a heart to heart. I spoke to her in normal English, no "doggie talk," and I clearly explained that Mommy is sick and she's tired and she needs you and Molly to be on best behavior. I said I'm sorry that I sent you away and of course a kennel is not as fun as the 10 acres you get to roam around on here. But I needed a little break. I promised not to send them away again and asked for Barlie's forgiveness. I think she obliged because the tone of her bark changed after our talk.

I felt bad, but did what I needed to do at the time. I've reflected on it and decided I can do better. I think Barlie can do better too and she promised to talk to Molly and convince her to behave better as well. We've come to an agreement. They're my babies and I won't send them away again.

The Latest Numbers!

Wednesday used to be The Day. The day we got the numbers. Some need to be up, others desperately need to be down. During Round #2 of chemo The Day was always Wednesday. Well, now we're going to shake it up. The Day is now Tuesday. This way we know a day ahead of time whether I will be able to receive chemo. This week it's Monday because of Turkey day. It turns out, because of some problematic numbers I haven't been able to get chemo in weeks.

My last day of the juice was Nov. 1st. The next week was bad. I had fevers and my white blood cells were dangerously low. I think they're supposed to be like 1500 and mine were 10. You don't have to be a math genius to realize that is bad.

The week after that the red and white blood cells were fine but those damn platelets were low. Supposed to be 100 to receive chemo, mine were 33. But let's face it, a 33 is pretty good compared to my all time low of 6. Gotta focus on the glass half full.

Let's review the most important number though, the beta hCG.
Nov 1. - 10
Nov. 6 - 5.9
Nov. 13 - 5.3
Nov. 19th - Today - 4.5

Eeking ever so close to the magic "less than 2." And all of those small drops were with no chemo. Chris had even prepared me for a jump this week, saying without chemo for 19 days there was a good chance the # would rise. It's always good to prepare for the worst and hope for the best. Today's 4.5 was a nice surprise.

Here's the plan: chemo in the hospital Tuesday and Wednesday this week. That way I can be out of the hospital for Thanksgiving. Chris is still off of work for another week. I think he's finally back to himself again. It takes about a week to shake off the stress of work and usually that's when he has to go back. He hasn't shaken off the stress of his wife with cancer, but it's nice to be able to focus on one thing at a time. And right now that's me. I'm so blessed to have him and for him to be part of an office that's so wonderful, helpful and caring in true times of need. Chris and I can only hope to repay the debt we've racked up at his office and my office.

I've had such a wonderful flux of visitors and loved ones. I would of course much rather have them to Lancaster to go out and wine them and dine them. However, it turns out that sitting on the couch in your pj's and talking non-stop worked out just perfectly for Katie and Jesse. It goes to show you those high school bonds can still mean a lot - even 15+ years later when you have cancer.

My sister Ashley and  her husband Arty arrive tomorrow and I'm so thrilled to see them! I will be one day post chemo on Thanksgiving so I'm not going anywhere - not leaving this house - might not leave my bed except for the turkey part. So Arty, my chef/brother-in-law, will cook the feast for us! What a treat! He also agreed to put up our Christmas lights outside. It's something he doesn't get to do in Florida - unless it's a palm tree. And it's something I just simply wouldn't be able to do this year, period. It's a perfect fit!

It really does take a village to beat cancer. I might be the village idiot, but thanks to all the other villagers, I'm going to be just fine.

Hair Today, Gone Tomorrow

I've had cancer so long and been blogging for so many months, I can't remember what I wrote before. I'm pretty sure, the last time I lost my hair, I used Hair Today, Gone Tomorrow as the title. It goes to show you, I'm really not that creative.

Lost my hair for the second time. The first time was traumatic, this time was just dramatic. Chris was in Dallas for a conference. I had hoped that my hair follicles would hold on until he got home. No such luck. I took a shower that morning and just the force of the water alone was enough to detach my hair from my head. When I first stepped under the stream of water I could feel hair leaving my head and trailing down my back. At first I was creeped out but then I realized it was just locks flowing down my body toward the drain. It was then that I made the decision to just do it - use the water to its full advantage. I kept putting my hands through my hair under the water until there was very little left. I did open the shower curtain halfway through to get a look at the damage. And man did it look damaged! I had bald splotches where I had concentrated the water and then other sections still full of hair. Would have been a great freaky look for Halloween, but not for life, so I just kept washing my hair away.

This was the result of the shower-hair-removal-method.

 

 

Not the cleanest job, that's for sure! Look at those bangs! They just wouldn't let go. And the sideburns - I mean, c'mon! So it wasn't a total success, but I wouldn't call it a total failure either. I had to have Chris shave it again, to clean it up a bit, but it took like 6 days to get to that. You would be amazed how little you get done on days when you literally have nothing to do!

 

This is what was left behind. Now, if you have a problem with clogged drains - like we do - I don't recommend this method. You're sure to be bathing in ankle deep water because nothing goes down that drain after you do this. But like I said, I didn't have much of a choice after the power of the water made the locks leave.

Let's talk about something else important - how fucking dark that hair is?? I am a blonde, right? I mean, it's not my imagination that it says blonde on my license and that I act like a total ditz half the time. I've never actually dyed my hair - too expensive, have to sit at the salon too long - but I've been rocking Sun-In like a champ for decades. (Compare $3 bottle from CVS versus $150 dye job every 8 weeks. Sun-In wins every time.) So I've always had a little peroxide help but that hair looks black!

In anticipation of losing the lovely locks, I had Ronda take my picture again. It's clear I'm not one to run away from a camera. Plus, Ronda loves a muse. So it's a win-win and I wanted to document my cute pixie do before it left. So this is three months worth of hair, post-chemo. If I'm lucky, it might be like this again in about April.



 

Note: Ronda loves taking pictures by our stone wall. It really does make for a fun back drop. The best part of this picture? Not only is my hair a work in progress but so is the wall. Look closely, our new mason was about 75% done repointing the cement that holds those beautiful stones in. So the bottom half is finished, that top foot or two is still loose and cement-less. Thankfully Hurricane Sandy had already passed through and none of the stones fell on my head. Love a good photo shoot and love the wall after it's been secured in place for another 60 years.

 

 The hair looks a little blonde here, right? It's definitely lighter on my head than it was in the bottom of the tub! Everyone kept saying it looked like I had frosted tips. Darker at the roots, lighter at the ends. No matter what color it was, I was happy to have it on my head.

 

So happy ... I couldn't keep my eyes open! I like to include the fuck-up pictures so you know I'm not a total narcissist. I can't take myself seriously, so you shouldn't either.

Bald is in ... at least in my house anyway. And again, the silver linings ... now I take a really quick shower and I don't have to shave my legs ... because that hair fell out too! There's always an upside!