Numbers are up and so is my frustration level

I'm having a grumpy day. My numbers bumped up a little. I had 9 hours of chemo yesterday and I missed a big Christmas party. I'm just in a bad mood.

The stupid hCG went from 7.4 to 10.9 - just enough to be annoying. I panicked two weeks ago when it shot from 4 to 39. So a three point creep to 10 is nothing compared to that. But 10 is not good enough. 10 means there's still cancer. And I am so sick and tired of cancer.

Chemo at the office was fine yesterday. Kristin, and special guests Angie and Marcia are the highlights. I saw my dear friend and chemo buddy, Agnes and she's in need of extra prayers right now. So say one for her in my stead this week. We need to lift her and her family up to the Lord.

I'm trying not to project too far ahead. However, this continued roller coaster of hCG levels is really frustrating. And I don't want to continue to do this up and down for months. I feel like it simply means what we are doing is not working. I think everyone else is like 97% sure I won't die, but when I get nervous, I'm only 85% sure I won't die. And that 15% can be a bitch on a bad day.

I'm still trying to laugh and Mean Cards helped me do that this week. This is a line of greeting cards that are simply mean. I bought 4 of them for friends, so if you get one, it means I love you even though the card is mean. I found this one and bought it for myself.

The words are a little fuzzy, but is says "A lot of us think you're faking." With that picture of the chemo pole and the head hanging low, like he's guilty. I was laughing out loud in the store. This is what I think a lot of people at work think. I'm sure they are like, that bitch is not even sick, she's always been dramatic, she shaved her head and just wanted a solid year off of work. She's a doctor's wife and doesn't need the money anyway, this was just the way she would get out of work rather than quitting like everyone else. So for the people who think that, this card is from me to you!

This is the inside:

It reads: "not me, of course." I feel like this is a card Joe Mitton would send and I would laugh. I kept laughing while I was at the store, Tellus 360, the re-claimed wood store on East King Street. That's where I got the cards. They also had a mean magnet I thought was perfect. It now graces my fridge.

Same stick figure, holding a Martini glass saying "it will make everything all better." I agree and I can't wait to drink one. So good when it touches the lips!!

Hopefully someday soon ....

Who's That Girl?

I like to think I'm "Medium Maintenance." Not terribly high maintenance (other than those fancy shoes) but not a Tom Boy either. If you ask Paige, who we vacation with a lot, it does take me long enough to get ready to go out for a fancy dinner. I'm not a product-whore though. I put moisturizer on my face, but I don't put 4 different moisturizers on my face. Are you getting my drift?

Well, I say this only to explain how absolutely lazy I have now become. There are some people who say put your make-up on every day, regardless of chemo or hospitalization or how you actually feel. I can understand their urging. I have chosen not to do that.

There are several reasons I'm going au natural. First, it's easier. Cancer is hard enough, I'm taking the easy way out. Second, I barely leave the house. Who am I going to see? And for the poor unfortunate souls who come to see me, they have to look at my regular face. Third, it hurts. My eyes at least. The chemo affects a lot of mucosal membranes, which is why my mouth and the lining of my stomach hurt a lot. Well, your eyes are wet too. When I'm on chemo, my eyes are sensitive and red. They get irritated very easily and make-up only makes it worse. I haven't lost my eyelashes or my eyebrows. Put that in the plus column. The eyelashes are a little thinner, but let's be honest, at this point I would glue dog hair to the lids just so it looked like there was something there. That's probably not my best look though. So just like that, I've rationalized no make-up.

It doesn't stop there though. I've realized there are a lot of things I've stopped doing. Some for good reason, others for laziness, others just because I'm out of my routine. At first, I thought that when I lost my hair I would rock some really great hoops. Big earrings for a big bald head. Absolutely not. I looked retarded. Totally ridiculous. If I think of it, I'll do an earring fashion show and snap some pics. Not a good look for me. So I downgraded (if you can even call it that :-) to diamonds! Chris bought me perfect studs for our wedding and I usually wear them in second hole in my ear. I moved them up, thinking diamonds are classic and they'd look fine. They looked beautiful, but I quickly realized how much it hurts to have metal poking into the side of your head at night. With hair, the posts of all earrings are buffered a bit. With this shiny noggin' there was nowhere for the posts to go but straight into my skull. After about a week of bad sleep, I ditched the diamonds and earrings all together.

Thong underwear. I'm a fan. Typically. Years ago I decided as a semi-attractive person who wears suit pants each day, I could rock a thong on a daily basis. I don't typically find it uncomfortable or annoying. Very used to the dental floss between my ass cheeks by now. Until cancer that is. I have had two uterine surgeries and plenty of ass problems (see several previous posts) and thong underwear is a thing of the past. It just has to be that way. So instead of graduating to semi-normal regular underwear, I went straight to Granny Panties. If you're a Costco shopper, you might be familiar with them. They call them the it-sie-bit-sie brand. But there is nothing it-sie or bit-sie about these bad boys. I can pretty much tuck them under my bra (which I still wear, even cancer can't get me out of good boobage support.) I did buy them in cute pink-ish colors. But believe me, even a nice pastel pink hue can't make these look sexy when Chris is looking. The poor man. I'm a bald woman, who wears no make-up, ditched the beautiful jewelry he's given me and I walk around in underwear that looks like a 1920's swim suit. I thought I just should up the game a bit.

I was feeling well this weekend. We decided to go out to a nice dinner. I actually wore pants that were not for yoga or sweating. In fact, I had a whole fun new outfit on, thanks to my dear friend and personal shopper Chris Steltz who works at the Limited. She said I could rock the ankle length print pant (now ankle-length is cool, my whole life I've been wearing ankle length and they called me Floods - also see previous posts). I even put on heels and a WIG! (Still very uncomfortable. When I put it on, I think I spent so much money on these, I should really wear them more. But then I remember instantly why I don't like wearing them. Scratchy and the hair is always poking me in the face. If we're going for Granny Panties style comfort, bald is best.) Then I hit the mirror with my make-up bag and went to town. Putting on my "face" is like riding a bike. Right back into the swing of things. I have this process down pat. The only problem is, it's been so long since I used some of the make-up the shit is all dried up and cruddy. See, now cancer is costing me money in make-up. Gosh, is there nothing cancer won't fuck up? Anyway, I got all dolled up with somewhere to go!

This is a terrible picture. Am I really that wide or did the camera distort that photo? I'm going with, "it's the camera's fault." Also, it looks like Barlie's about to poop and who is that woman on the TV?? We were watching some really annoying shows including Jungle Gold, but I don't know what show that is. Either way. I got dressed up and made Chris take a picture.

The funniest part is I wanted to go to this restaurant we've never been to before. It's hard to get into. So I called and made a reservation, even went online and looked at the menu. Then we walk in and I say to Chris, "Wait, we've been here before. This is not where I wanted to go." Well, too late. Chemo brain took over, messed that one up. But it was nice to be out with my honey. As soon as we got in the car I ripped the wig off and threw it in the backseat and unbuttoned my pants for the ride home because I was so full. Classy as always!

I'm Hospital Happy!

Wow, what a difference a little bitching makes!

Just returned home from my two day infusion at LGH and it was like a different world! After 5 hour, 5 1/2 hour then a 6 1/2 hour wait for chemotherapy the last three times, this time the staff had the juice dripping 2 hours and 20 minutes after I arrived. A totally acceptable amount of time considering all that has to happen.

I was pissed last time. Marcia was flabbergasted. My sister was here for the 6.5 hour wait and just couldn't understand the delay. So the Monday after that hospitalization, I visited the Infusion Center at the Health Campus. One of the head pharmacists, Ryan, sat with me for more than a hour explaining how this chemo system works, why it's mixed at an off-site location, how long it takes to mix, to have the drugs couriered to the hospital. Let's be clear, it's a slightly fucked up and convoluted system. But understanding all the parts of the system helps me.

They promised to try harder. I promised to keep my anger in check and thanked Ryan for taking the time to talk to me. Squeaky wheel gets the grease sometimes. We arrived to the hospital at 8 am, my pre-meds were dripping at 9:30 and the chemo started to drip at 10:40. Huge improvement over 4pm, huh?

So this latest hospital admission was a success. Marcia was my special guest. What would I do without her? She picked me up at my house at 7:30am and slept with me at the hospital all night and didn't leave till 1 this afternoon. She an angel on earth and I so enjoy her company. We talk non-stop, about everything. We should both have laryngitis by now. Plus having her sleep over was like being in college all over again. It was fun to have a roommate! Marcia's the best and I love her.  

Another week down, lots more to go. But slow and steady wins the race and someday, someday I'll be cancer-free. Then you can spend your time reading the Onion.com rather than this drivel.

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. :-)