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. :-)