| Merry Christmas!! Sorry I have not posted in a bit. We were busy being Merry! Wow! What a wonderful holiday we had! You can't keep a Cooke down during the holiday season and this year was no exception ... the only difference was I had a legion of elves this year. And I was more like a sack of potatoes laying on the couch while all the elves made magic (and an entire meal.) Sometimes it takes a village, sometimes it takes the Jorgensen/Cooper/Luna/Cooke Brigade to throw a feast. And feast we did. (I'm still eating Christmas Day leftovers. Is that a health risk, or you think that shit is still edible?) Cancer recap: Week before Christmas, blood went from 10.9 to 5.1 - that's what I'm talking about! Good, old fashioned Christmas Miracle! That was after the Cisplatin week, which seems to be the drug that is working the best. My awesome girlfriend Chris Steltz slept over at the hospital with me. (I just typed "my dear, dear friend Chris" but thought that made her sound stuffy, when in fact, she is one of the most fun loving, laid back people I know. She is a dear but "hot stuff" fits her better.) I told her we had to wear cute pajamas and stay up all night and share secrets like we were college roommates. Her only reply was, "Well, of course, but I don't have cute pajamas." So while picking up stocking stuffers at CVS, I went out of my way and bought her $9 pink polka dot flannel pj's. They've probably fallen apart in the wash already. My mom and her husband Bruce, my youngest sister Taylor and her children, Hailey (6) and William (3) arrived from North Carolina on Saturday. We played and played and played. And then sometimes Aunt Mimi (that's me) needed to take a nap. So I'd lay down and then a little William would sneak in and come to the edge of the bed and say, "Aunt Mimi, whatcha doing?" Inevitably he would climb in with me and snuggle (my favorite) and we'd turn on the TV and watch Sponge Bob (his favorite) and no napping would occur. But that's the fun of having family around, right? Wouldn't change my snuggle time for anything! It snowed a bit here on Christmas Eve. So special. The kids who came from North Carolina didn't bring any snow clothes - go figure! But we bundled them up and let them loose. This is really the first time William has been old enough to go out and play in the snow! So fun to watch his excitement and watch him get cold!  
Yes, Santa came. Yes, there were a million presents under the tree. Yes, our garbage pails are overflowing from the amount of wrapping paper and boxes left over. Yes, you need a PhD to get most kids toys out of the packaging. Yes, invariably small children will want to play with the one toy that they can't - in this case it was William's tee-ball batting practice game. Not an indoor game and everything was snowy/muddy outside. (Aunt Mimi, can you open this for me? Can I play this now? I'm going to go outside to play this now.)
There were two distinct piles on Christmas morning: Pink and Barbie - Toy Story and Sponge Bob
My Santa Claus was very good to me. Chris gave me a beautiful David Yurman ring and a big deal Nikon camera. So maybe the pics on this blog will be of better quality now. I tried to get fancy/schmancy with this one: a pic of the ring with the new camera (see how I worked that all in?? I got Chris a firearm and a surf board. We're hoping he doesn't attempt to use those gifts at the same time.)  The Cookes joined us for dinner Christmas night for a total of 15 mouths to feed. It was no problem because we made enough food for 150 people. I like to think that our families would have come to our house even if I wasn't sick this year. But if cancer is the reason that so many of us got to share the holiday together, I'll take that as a beautiful blessing. |
Sunday, December 30, 2012
A Happy Holiday Hiatus
Thursday, December 13, 2012
I'm Going To Stop Writing Notes To Myself
I have two parents; one's a saver, one's a thrower-awayer. Dad has a series of boxes hidden somewhere that he calls "The Archives." I'm sure it has my Kindergarten report card, a crayon drawing from 5th grade and the program from my college graduation. That kind of stuff, times 60 years of collecting. If Mommy came across something like that, she's say this is clutter and what are we going to save it for. That's why her house is immaculate. I trend toward saving and that's why my house is a mess.
I don't think there is a right or wrong, but this "saving" or "remembering" thing that I have bit me in the ass while I was decorating for Christmas. I don't know if it's the journalist in me, but writing stuff down to "save" it for later has always been big. I kept a journal in high school - it is now the most hysterical thing to read. My spelling was just as bad as it is now and my handwriting was worse. Also, I write myself a Leap Day Letter every four years. I have four of them so far. I tell my 4 year future self what's going on now and I ask her questions about what it's like when I read it the future. I project where I think I'm going to be in four years. In 2004's Leap Letter, Chris and I just started dating. In 2008's letter, we were planning our wedding. I like to see how things change and what you thought it would be like.
While opening up one of my 36 Rubbermaid containers full of decorations, I found a note I wrote myself last year. I must have been in a good mood when I was cleaning up from Christmas, because I gave the 2012 Meredith some information to make decorating easier this year. Namely, (see below) that "several strands of light on the garland don't work." In other words, I was too lazy to fix it at the end of the 2011 season, but be forewarned for the 2012 season. Because I knew I would be reading this little note to myself 12 months later, I added "are you pregnant?" as a note to myself. Last year at this time, it was totally plausible that I might be pregnant right now. If only the 2011 Meredith knew what was coming. I opened the container this year, took out the garland, found the note at the bottom and sat down and cried. No, I'm not pregnant. No, I'm never gonna be pregnant. Yes, I think I might stop writing myself notes. Who could have known? It stung a little bit.
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 ....
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 ....
Monday, December 10, 2012
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!
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!
Thursday, December 6, 2012
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.
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.
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.
Friday, November 30, 2012
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.
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.
Tuesday, November 27, 2012
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.
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.
Sunday, November 25, 2012
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. :-)
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. :-)
Monday, November 19, 2012
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.
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.
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!
Monday, November 12, 2012
Ok, Getting Better, Much Improved
Hi. Wow. What a week. I will go back in the next few days and chronicle the last few days because they simply need to be documented properly. But for now, I've turned the corner. Thank goodness. Several days ago I could not actually get out of the bed. It scared me. It felt really bad. But I am much better. I would say I'm at 45% - which I think is pretty low. Yet, at one point, I think I hit an all time low of 15%. That's bad. So I'm loving 45. And still trying to envision 100%. I can't remember when taking a shower was something you just did before going to work. Not an event that may or may not take so much energy you have to take a two hour nap naked, wrapped only in a towel because you didn't have it in you to even put your underware on before you crawled back into bed. (Warning to those who just walk in my house!!)
My husband is an angel. How did I get so lucky to get him? He said to me the other day, he thinks everything in his life has oddly added up, somehow come together and prepared him for this moment, this time, this job to care for me. I think he's right. I am so weepy now and I cry just thinking of my absolute luck and blessing to have Chris. He's my booba. He's my other half. We're Team Cooke and he's the captain. I like to think of myself as the big breasted, perky, ditsy cheerleader. He is clearly hot, quarterback of the football team, science club champion and class president part of the team. He's a catch and I know it and I'm just such mush in his arms. It's really the only place I want to be. It's warm and safe there. He came home the other day in the middle of the storm and said, "I took the next two weeks off. I need to be here." I was shocked and instantly thrilled. I never felt so loved.
I haven't fainted lately. I am again in control of when I go to the bathroom. I didn't walk for several days and used my sister-in-law Hilary's wheelchair for a couple days. She's a trooper and only uses it when there's a day of too much walking. She graciously let me borrow it because there were days of just no walking. Bald, wrapped up like a Babushka (?) and sitting in a wheelchair is not a good look. Makes you look like your sick. I hate looking like a sick person. I def looked like a sick person.
My favorite part of the wheelchair use though was Mimi. She's Kristin's right hand woman at Dr. Evans office. And Mimi calls 'em like she see 'em. I love her personality. We are buddies and because she's Mimi and I'm Mimi to Hailey and William, we are naturally friends. But I did go to the office in the wheelchair the other day. To be clear, it was necessary. I could.not.walk. But I know full well, this look is dramatic and over the top.
So, Marcia wheels me into the office. Mimi and Kristin are down the long hallway to the Chemo Lounge. Mimi can see me and says from there, "Oh for God's sake!" meaning, "Look at this bitch, she's in a wheelchair?!? Is that really necessary?" I laughed as Marsh pushed me all the way down the hallway. When I got to Mimi I said, "I know, right? Drama Queen. I need MORE attention!" It's good to laugh, even when you're bald and in a wheelchair.
I go for my blood work again tomorrow. The last number was 5.6. I would really, really LOVE for it to be less than 2 - meaning cancer-free. Still have 6 more chemos after that, but it's one step closer, right? If the other numbers are good, I will go back to Week #1 chemo which means hospital on Wed/Thurs. Before I try to control everything and put a whole plan in place, let's just see what the bloodwork says. But I'm feeling good about it.
Katie was a dream of a caregiver. I miss her terribly already. More about our time together another time. But another of the "high school girls"- Jesse - lovingly arrives Wednesday. She's a chemo nurse at St. Jude Medical Center in Memphis. Like, hello? How awesome is that? She's good peeps and cancer smart. I can't wait.
Goodnight and thank you for the prayers that just helped me get through this bump. Would still be trapped in bed without them. xoxo
My husband is an angel. How did I get so lucky to get him? He said to me the other day, he thinks everything in his life has oddly added up, somehow come together and prepared him for this moment, this time, this job to care for me. I think he's right. I am so weepy now and I cry just thinking of my absolute luck and blessing to have Chris. He's my booba. He's my other half. We're Team Cooke and he's the captain. I like to think of myself as the big breasted, perky, ditsy cheerleader. He is clearly hot, quarterback of the football team, science club champion and class president part of the team. He's a catch and I know it and I'm just such mush in his arms. It's really the only place I want to be. It's warm and safe there. He came home the other day in the middle of the storm and said, "I took the next two weeks off. I need to be here." I was shocked and instantly thrilled. I never felt so loved.
I haven't fainted lately. I am again in control of when I go to the bathroom. I didn't walk for several days and used my sister-in-law Hilary's wheelchair for a couple days. She's a trooper and only uses it when there's a day of too much walking. She graciously let me borrow it because there were days of just no walking. Bald, wrapped up like a Babushka (?) and sitting in a wheelchair is not a good look. Makes you look like your sick. I hate looking like a sick person. I def looked like a sick person.
My favorite part of the wheelchair use though was Mimi. She's Kristin's right hand woman at Dr. Evans office. And Mimi calls 'em like she see 'em. I love her personality. We are buddies and because she's Mimi and I'm Mimi to Hailey and William, we are naturally friends. But I did go to the office in the wheelchair the other day. To be clear, it was necessary. I could.not.walk. But I know full well, this look is dramatic and over the top.
So, Marcia wheels me into the office. Mimi and Kristin are down the long hallway to the Chemo Lounge. Mimi can see me and says from there, "Oh for God's sake!" meaning, "Look at this bitch, she's in a wheelchair?!? Is that really necessary?" I laughed as Marsh pushed me all the way down the hallway. When I got to Mimi I said, "I know, right? Drama Queen. I need MORE attention!" It's good to laugh, even when you're bald and in a wheelchair.
I go for my blood work again tomorrow. The last number was 5.6. I would really, really LOVE for it to be less than 2 - meaning cancer-free. Still have 6 more chemos after that, but it's one step closer, right? If the other numbers are good, I will go back to Week #1 chemo which means hospital on Wed/Thurs. Before I try to control everything and put a whole plan in place, let's just see what the bloodwork says. But I'm feeling good about it.
Katie was a dream of a caregiver. I miss her terribly already. More about our time together another time. But another of the "high school girls"- Jesse - lovingly arrives Wednesday. She's a chemo nurse at St. Jude Medical Center in Memphis. Like, hello? How awesome is that? She's good peeps and cancer smart. I can't wait.
Goodnight and thank you for the prayers that just helped me get through this bump. Would still be trapped in bed without them. xoxo
Friday, November 9, 2012
Terrible, Horrible, No Good, Very Bad
This is both the title of my favorite children's book by Judith Viorst and how I would like to describe my last few days.
I can not dwell because I'm so tired and in so much stomach distress right now. I just want to check in.
My number dropped again. It was 10 at Halloween. The hcg is now 5.6 - that is spectacular news is no lost on me. In fact it's the only thing that is helping to keep me focused. Most of my other blood work was too low for chemo this Wednesday and I was no at all disappointed.
For three days I literally could not get out of the bed. On day I did, I went to sit in a chair next to Chris. The next thing I know, Chris is leaning over me checking my pulse at my throat. I said, "What happened?" He said, "Did you have a nice sleep?" I legitimately said, "Yes. What was I talking about." "Nothing," he said, "you eyes just up and rolled into the back of your head." These are not good days.
My platelets are down to 11, I've had fluids from Kristin 3 times this week - great story there.
And at 32 years old, I officially lost control of my bowels yesterday morning. - also a terrible, yet funny and totally embarrassing story there.
Like I said, These are not good days.
Katie took two days of work and drove 5 five hours on a moments notice to get here. These things make all the difference. I think I've done cancer pretty-perky so far. I am much less perky right now. Send perky vibes, like Katie Couric perky.
I can not dwell because I'm so tired and in so much stomach distress right now. I just want to check in.
My number dropped again. It was 10 at Halloween. The hcg is now 5.6 - that is spectacular news is no lost on me. In fact it's the only thing that is helping to keep me focused. Most of my other blood work was too low for chemo this Wednesday and I was no at all disappointed.
For three days I literally could not get out of the bed. On day I did, I went to sit in a chair next to Chris. The next thing I know, Chris is leaning over me checking my pulse at my throat. I said, "What happened?" He said, "Did you have a nice sleep?" I legitimately said, "Yes. What was I talking about." "Nothing," he said, "you eyes just up and rolled into the back of your head." These are not good days.
My platelets are down to 11, I've had fluids from Kristin 3 times this week - great story there.
And at 32 years old, I officially lost control of my bowels yesterday morning. - also a terrible, yet funny and totally embarrassing story there.
Like I said, These are not good days.
Katie took two days of work and drove 5 five hours on a moments notice to get here. These things make all the difference. I think I've done cancer pretty-perky so far. I am much less perky right now. Send perky vibes, like Katie Couric perky.
Sunday, November 4, 2012
What Chemo? I Hosted Halloween
Cancer has cancelled more than it's fair share of parties in the last four years. The first was the Gardner's Caroling Party, a decades old tradition that Chris and I missed December 2008. It was extra sad because we were gifted the Velvet Elvis that year and I was too sick to be at the party to receive the great Masterpiece. That's when cancer really starts to piss me off.
The latest party cancer tried to tackle away from me was Halloween. But thanks to some spectacular friends, I was able to enjoy a Halloween Celebration unlike any other. And no offense to all those involved, I hope we never have to have one like that again.
It all started with this:
... a dear friend with a creative gift that she had shipped overnight so it would arrive in time!
This is Deb Smithgall and I with a Cosmopolitan Glass Costume!! It's pink and sparkly and has a lemon rind garnish!! The Smithgall's have always been close to my heart. From the times I interviewed Charlie when he was Mayor, to the day he proclaimed my birthday a Special Day of Recognition in Lancaster City. And then, of course, we can't forget that he set Chris and I up!! Match maker, match maker! Deb has been sending the funniest, cutest cards ... promising hugs and well wishes. They've really gone above and beyond already ... and then this! The costume of the year!!
So I spent Halloween in the hospital. Checked in at 9 am. They accessed my port with no problem this time, so that helps keep my stress level low. The amount of time it takes to get the chemo delivered to the hospital is another problem entirely. Hours, hours, hours. We have yet to figure out why Kristin can do it in 3 minutes and it takes LGH 6 - count 'em; 6 - hours to get the poison up to my room.
But, don't fret. With a Cosmo Costume all is well. The day-shift girls heard I had a costume and knew I was going to pair it with my shiny Louboutins, so I promised to don the outfit before their shift ended. So I was all dolled up with no where to go by 2:30pm. Once the girls oohed and ahhed and laughed with me (they are so fun!) I would lay down in the bed and the wire hoop at the bottom of the "glass" would stick straight up. Had to make sure it wasn't a free show for whoever walked in!
So the chemo dripped and dripped and dripped. And you know what? I didn't really notice. I brought candy to give our - Reece's Peanut Butter Cups - and the Trick or Treat was my distribution method. I put them in the urinal hat. It's a treat if I didn't use the urinal thingy, but it's a trick if I tinkled before I put the candy in it! Good luck!
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If you build it, they will come. I had a costume and candy ... the next logical step was trick or treaters! My friends did not disappoint! I had three shifts of Halloweenies!! First, the Essis Family and the Carrol Family, all dressed up and full of spirit!
Then the infamous Andys! Plus AnneMarie and Abby! And ... Brogan, their service dog!! Also in costume! Barlie wouldn't keep those devil ears on her head for one minute. Molly actually has devil ears under all the soft fur. Brogan cuddled with me on the end of the bed. Plus he made a fun stir on the floor when all the other patients and nurses heard I was harboring a furry friend!
But wait, the night wasn't over yet. Drip, drip, drip and still I had more friends! This is the hardcore crew - The Speitels! They hit the streets, filled up their bags and still had energy left to entertain "Mer Bear" as they call me!! They came with smiles and presents and photographs and ... candy!! I've never seen four boys hang out in a hospital room with this crazy girl in her 30's and have so much fun! I would have been full of "Can we go home yet??" But instead, they were full of laughs and funny poses.
Nicholas is probably the most reserved of the four boys ... but when you tell him to "Strike A Pose" the kid has his go-to move! We showed them off on the Oncology Floor!
So as you can see, Halloween was no bust. Cancer couldn't take that away! I felt good. My numbers were good. I had a blast all day. I was happy to be surrounded by people who love me. I was full up on Reece's Peanut Butter Cups. I slept like a baby that night. It's all good. I don't think I would have even thought to have fun without a Cosmo Costume. So a special thanks again to the Smithgalls. I have you to thank for my husband ... let's add Cosmo to that list! Happy Halloween!
The latest party cancer tried to tackle away from me was Halloween. But thanks to some spectacular friends, I was able to enjoy a Halloween Celebration unlike any other. And no offense to all those involved, I hope we never have to have one like that again.
It all started with this:
... a dear friend with a creative gift that she had shipped overnight so it would arrive in time!
This is Deb Smithgall and I with a Cosmopolitan Glass Costume!! It's pink and sparkly and has a lemon rind garnish!! The Smithgall's have always been close to my heart. From the times I interviewed Charlie when he was Mayor, to the day he proclaimed my birthday a Special Day of Recognition in Lancaster City. And then, of course, we can't forget that he set Chris and I up!! Match maker, match maker! Deb has been sending the funniest, cutest cards ... promising hugs and well wishes. They've really gone above and beyond already ... and then this! The costume of the year!!
So I spent Halloween in the hospital. Checked in at 9 am. They accessed my port with no problem this time, so that helps keep my stress level low. The amount of time it takes to get the chemo delivered to the hospital is another problem entirely. Hours, hours, hours. We have yet to figure out why Kristin can do it in 3 minutes and it takes LGH 6 - count 'em; 6 - hours to get the poison up to my room.
But, don't fret. With a Cosmo Costume all is well. The day-shift girls heard I had a costume and knew I was going to pair it with my shiny Louboutins, so I promised to don the outfit before their shift ended. So I was all dolled up with no where to go by 2:30pm. Once the girls oohed and ahhed and laughed with me (they are so fun!) I would lay down in the bed and the wire hoop at the bottom of the "glass" would stick straight up. Had to make sure it wasn't a free show for whoever walked in!
 |
| Me and Cally - as a Cat - and Chelsea, who said she looked like a blue M&M while wearing the Chemo protocol scrubs. |
So the chemo dripped and dripped and dripped. And you know what? I didn't really notice. I brought candy to give our - Reece's Peanut Butter Cups - and the Trick or Treat was my distribution method. I put them in the urinal hat. It's a treat if I didn't use the urinal thingy, but it's a trick if I tinkled before I put the candy in it! Good luck!
.jpg)
If you build it, they will come. I had a costume and candy ... the next logical step was trick or treaters! My friends did not disappoint! I had three shifts of Halloweenies!! First, the Essis Family and the Carrol Family, all dressed up and full of spirit!
.JPG) |
| Frankie, Matt, Michael, Julianna and Lauren |
Then the infamous Andys! Plus AnneMarie and Abby! And ... Brogan, their service dog!! Also in costume! Barlie wouldn't keep those devil ears on her head for one minute. Molly actually has devil ears under all the soft fur. Brogan cuddled with me on the end of the bed. Plus he made a fun stir on the floor when all the other patients and nurses heard I was harboring a furry friend!
.JPG) |
| Abby, AnneMarie, Andy (in his Melody wig), Andy and Brogan |
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| Nicholas, Noah, Me and Angie, Colin and Luke in front. Poor Pete isn't in any of the pictures because we make him take them all! We love you Pete! |
Nicholas is probably the most reserved of the four boys ... but when you tell him to "Strike A Pose" the kid has his go-to move! We showed them off on the Oncology Floor!
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| Work it! Work it! |
Tuesday, October 30, 2012
Treat, Not Trick!
My number went down, my number went down, God Almighty, Thank You. My number went down.
I was flipping out a little bit on the inside about today's blood draw. It's done nothing but go up for like 6 weeks - despite a surgical resection, hysterectomy and 24 hours of straight Methotrexate. If it went up again I was going to go from semi-calm to total freak-out in like 3 point 2 seconds. Instead, I felt a rush of relief, like the elephant that had been standing on my chest stepped off. Oh sweet relief!
The number was 68. It dropped to 10. Wow, what a drop. What a satisfying drop. It's working. The drugs are working. Just to give you a small glimpse into my tortured psyche the last few days, I was sure I knew why the chemo wasn't working. We don't really know where the cancer is. And if it's in your brain, chemo won't pass through some special membrane. I was just so worried that the reason we didn't get results right away was because I had brain cancer. And at that point, just take me out back and shoot me. So every time I put my head on the pillow and it would pound from the racing thoughts and the tension, I thought - it couldn't possibly be the stress that's making my head pound. It has to be brain cancer. This are not the thoughts of a person who is well. And I'm trying so hard to be well.
I went back to counseling yesterday. I've been going to counseling almost continuously since I was 14. After my parents got divorced, it was a great way to talk and think things out and gave me a real sense of understand and peace. I stopped going when I first got sick because every time I'd make an appointment, I would end up cancelling it because I was feeling so ill or had to be admitted or just didn't want to get out of bed. It's obvious now that was probably the time I needed to go the most. But people don't see things so clearly when they are in the midst of them.
I had a bad day Friday and knew then I had to go back. There's a hole in my being, a cavern in my soul because of that hysterectomy. But things have been moving so quickly, the plans have been piling up on each other - what should we do? how quickly do we have to move? who should we call to confer? The gravity of the hysterectomy got lost. But now I'm getting those thoughts - the racing thoughts that just won't stop. I'll never be pregnant, never have a belly, never feel a baby kick inside, never buy maternity clothes, never send Chris out for ice cream and pickles, never have my water break, never push. Some people say, "it's not all it's cracked up to be." They are trying to help, but I wanted to determine that for myself. I try to push the bad thoughts away and think of happy things. Hailey. The Beach House. Velveeta Shells and Cheese with a side of Patio Pizza. But the bad thoughts are strong and they push their way in. So now I'm going to sit with them, feel them, think about them and accept them. There is a profound sadness living in me right now. It will go away someday, or subside, or change into something else. But for now, it's really, real sadness. I pray God will help take it away.
In the meantime, days like today are happier days. Good numbers. Good friends to help. Safe from the storm. Ready for Halloween, Lanc. General Hosp. style! Wait until you see me tomorrow for my next hospital admission and round of chemo. Let's just say, I didn't call this blog Cosmos and Chemo for nothin'!
I was flipping out a little bit on the inside about today's blood draw. It's done nothing but go up for like 6 weeks - despite a surgical resection, hysterectomy and 24 hours of straight Methotrexate. If it went up again I was going to go from semi-calm to total freak-out in like 3 point 2 seconds. Instead, I felt a rush of relief, like the elephant that had been standing on my chest stepped off. Oh sweet relief!
The number was 68. It dropped to 10. Wow, what a drop. What a satisfying drop. It's working. The drugs are working. Just to give you a small glimpse into my tortured psyche the last few days, I was sure I knew why the chemo wasn't working. We don't really know where the cancer is. And if it's in your brain, chemo won't pass through some special membrane. I was just so worried that the reason we didn't get results right away was because I had brain cancer. And at that point, just take me out back and shoot me. So every time I put my head on the pillow and it would pound from the racing thoughts and the tension, I thought - it couldn't possibly be the stress that's making my head pound. It has to be brain cancer. This are not the thoughts of a person who is well. And I'm trying so hard to be well.
I went back to counseling yesterday. I've been going to counseling almost continuously since I was 14. After my parents got divorced, it was a great way to talk and think things out and gave me a real sense of understand and peace. I stopped going when I first got sick because every time I'd make an appointment, I would end up cancelling it because I was feeling so ill or had to be admitted or just didn't want to get out of bed. It's obvious now that was probably the time I needed to go the most. But people don't see things so clearly when they are in the midst of them.
I had a bad day Friday and knew then I had to go back. There's a hole in my being, a cavern in my soul because of that hysterectomy. But things have been moving so quickly, the plans have been piling up on each other - what should we do? how quickly do we have to move? who should we call to confer? The gravity of the hysterectomy got lost. But now I'm getting those thoughts - the racing thoughts that just won't stop. I'll never be pregnant, never have a belly, never feel a baby kick inside, never buy maternity clothes, never send Chris out for ice cream and pickles, never have my water break, never push. Some people say, "it's not all it's cracked up to be." They are trying to help, but I wanted to determine that for myself. I try to push the bad thoughts away and think of happy things. Hailey. The Beach House. Velveeta Shells and Cheese with a side of Patio Pizza. But the bad thoughts are strong and they push their way in. So now I'm going to sit with them, feel them, think about them and accept them. There is a profound sadness living in me right now. It will go away someday, or subside, or change into something else. But for now, it's really, real sadness. I pray God will help take it away.
In the meantime, days like today are happier days. Good numbers. Good friends to help. Safe from the storm. Ready for Halloween, Lanc. General Hosp. style! Wait until you see me tomorrow for my next hospital admission and round of chemo. Let's just say, I didn't call this blog Cosmos and Chemo for nothin'!
Friday, October 26, 2012
Quite the Hospital Stay
The blog is a little behind. I know in this digital age, all this info should be instantaneous. But I'm so tired it takes me a couple days (or a week or two) to get the blog up to speed.
So backing up to my first hospital stay ... I walked into a decorated hospital room!
I don't know if you can see it very well, but there are streamers and stars and sparkly decorations all over an otherwise bland hospital room! Now that's some VIP treatment!
The staff of 8 Lime, AKA: The Cancer Floor, asked me to do their team's Relay for Life, remember? So, because of that kind invitation and that emotional day on the track, I know a lot of the girls on the floor. Cally is the ring leader and she's always been wonderful. But to walk into the hospital room to decorations was above and beyond!
It was pretty funny being admitted. They have to have a volunteer bring you up to the floor. Now, I don't need a volunteer and that's what I told the lady. But she said it was required. Fine. She also asked if I wanted a wheelchair. Now that's where I draw the line. I can walk to the floor by myself. So I pass on the wheelchair but agree to be led by a volunteer.
That's when I meet Gene. I'm sure he's a kind, old soul. And by old I mean like 97. He's hunched over, not super smiley and the first thing he says is, "You should have taken the wheelchair. It's a long walk." I thought, does HE want the wheel chair?? I'd be happy to push him up to 8 Lime. Again. What's the point of a volunteer if you're pushing him in the wheelchair.
So there's Gene, trudging along, shuffling in his orthopedic shoes with Velcro and his sweater vest. I'm trying to make small talk with him, but he's obviously pissed I made the wrong choice on the wheelchair question. Then Mom and Marcia are a few steps behind me, exchanging looks about who is going to catch Gene if he falls over from this walk.
Well, the killer of the story is when we get to my room. The door is closed and Gene just walks right in. But the girls were in there still decorating. When they see the door suddenly swing open, on instinct they shout, "Wait, stop! Don't come in here yet!" They simply wanted more time to sass up my room, but damn did this throw Gene for a loop. He was so confused. I walked in the room anyway, gave hugs to the girls. He is standing there wondering why there's a party and if this is even the right room. Hysterical. If only we had a wheelchair for Gene to sit down in and catch his breath!
So backing up to my first hospital stay ... I walked into a decorated hospital room!
I don't know if you can see it very well, but there are streamers and stars and sparkly decorations all over an otherwise bland hospital room! Now that's some VIP treatment!
The staff of 8 Lime, AKA: The Cancer Floor, asked me to do their team's Relay for Life, remember? So, because of that kind invitation and that emotional day on the track, I know a lot of the girls on the floor. Cally is the ring leader and she's always been wonderful. But to walk into the hospital room to decorations was above and beyond!
It was pretty funny being admitted. They have to have a volunteer bring you up to the floor. Now, I don't need a volunteer and that's what I told the lady. But she said it was required. Fine. She also asked if I wanted a wheelchair. Now that's where I draw the line. I can walk to the floor by myself. So I pass on the wheelchair but agree to be led by a volunteer.
That's when I meet Gene. I'm sure he's a kind, old soul. And by old I mean like 97. He's hunched over, not super smiley and the first thing he says is, "You should have taken the wheelchair. It's a long walk." I thought, does HE want the wheel chair?? I'd be happy to push him up to 8 Lime. Again. What's the point of a volunteer if you're pushing him in the wheelchair.
So there's Gene, trudging along, shuffling in his orthopedic shoes with Velcro and his sweater vest. I'm trying to make small talk with him, but he's obviously pissed I made the wrong choice on the wheelchair question. Then Mom and Marcia are a few steps behind me, exchanging looks about who is going to catch Gene if he falls over from this walk.
Well, the killer of the story is when we get to my room. The door is closed and Gene just walks right in. But the girls were in there still decorating. When they see the door suddenly swing open, on instinct they shout, "Wait, stop! Don't come in here yet!" They simply wanted more time to sass up my room, but damn did this throw Gene for a loop. He was so confused. I walked in the room anyway, gave hugs to the girls. He is standing there wondering why there's a party and if this is even the right room. Hysterical. If only we had a wheelchair for Gene to sit down in and catch his breath!
I'm OK
So this is Week #2. The Non-Hospital Week. I went to the Chemo Lounge with Kristin on Wednesday. Marcia and I arrived nice and early. The infusion during Week #2 is so long we have to be the first people there and we're the last to leave. But it's only one day, instead of two and I still get to sleep in my own bed.
I feel very, very tired. And then bored. I'm listless. I'm really trying to let that go though. Each day I think, what did I accomplish today? A load of laundry? Finished reading a People Magazine? Return phone calls to family and friends? Dust up some of the dog hair? I need to feel like I did something. But I think I'm going to change my mindset on that. It might be a good day if I actually accomplish nothing. Just lay around enough to let the chemo kill the cancer that's hiding.
I feel very, very tired. And then bored. I'm listless. I'm really trying to let that go though. Each day I think, what did I accomplish today? A load of laundry? Finished reading a People Magazine? Return phone calls to family and friends? Dust up some of the dog hair? I need to feel like I did something. But I think I'm going to change my mindset on that. It might be a good day if I actually accomplish nothing. Just lay around enough to let the chemo kill the cancer that's hiding.
Friday, October 19, 2012
Happy to be Home
You don't sleep well in the hospital. Have I mentioned this?? It was so wonderful to come home and sleep in my own bed Thursday night. I kept pushing the nurses to get me out as soon as possible. One fun nurse says, "Why? Do you have a hot date?" Obviously not, but one is happy to do anything but sit in the hospital getting chemo.
Despite being in my own bed, I didn't sleep really well the next few nights. I have to take the "rescue" drug every six hours, so this time it was 7 and 2. Seven am then 1 pm, 7 around dinner then 1 in the morning. You know how you don't sleep well when you have to get up for something important ... like catching a plane, or a big morning meeting, or running a marathon (I'm thinking of a Seinfeld episode where the guy misses the marathon because of an AM PM problem with his alarm.). Well, I think I was having alarm anxiety and couldn't get a good night's sleep.
But Chris held me in bed, which makes me feel happy and warm and safe. And Mommy doted on me, and did the errands and the laundry and all the wonderful things only Mommies can do. I don't like the hospital days. I would rather been in the Chemo Lounge with Kristin and all my friends. But I had worked myself into an anxious tizzy before the hospital admission. So at least now I know it's not that bad.
Dorothy did have it right: there's no place like home.
Despite being in my own bed, I didn't sleep really well the next few nights. I have to take the "rescue" drug every six hours, so this time it was 7 and 2. Seven am then 1 pm, 7 around dinner then 1 in the morning. You know how you don't sleep well when you have to get up for something important ... like catching a plane, or a big morning meeting, or running a marathon (I'm thinking of a Seinfeld episode where the guy misses the marathon because of an AM PM problem with his alarm.). Well, I think I was having alarm anxiety and couldn't get a good night's sleep.
But Chris held me in bed, which makes me feel happy and warm and safe. And Mommy doted on me, and did the errands and the laundry and all the wonderful things only Mommies can do. I don't like the hospital days. I would rather been in the Chemo Lounge with Kristin and all my friends. But I had worked myself into an anxious tizzy before the hospital admission. So at least now I know it's not that bad.
Dorothy did have it right: there's no place like home.
Wednesday, October 17, 2012
Let's Do This
It's on. It took a little while to get "on" - but the chemo is dropping and will continue for 24 hours.
Mom is here. chris came to visit in between each case in the OR. It felt like a nice treat when he walked in the door. Marcia was here for several hours. The several hours while we had to wait for chemo to bed dropped off at the hospital. That's a story for later.
I'm trying to make this as much like going to the Chemo Lounge as possible. So I'm trying to sit in the BarcaLounger a lot rather than being stuck in the hospital bed. I miss Kristen and my chemo friends, but having Mommy all these hours is such a blessing. She took the picture below.
I'm wearing the great, bright pj's Marcia bought me - the top anyway. It's embarrassing to say I'm not wearing the bottoms because Barlie ate the crotch out of them. Classy, right??
Trying to drink a lot of water and take the anti-nauseau meds. Now we're going to try to get some sleep. Lots more to report but it will have to wait until tomorrow!
Much love!!!
Mom is here. chris came to visit in between each case in the OR. It felt like a nice treat when he walked in the door. Marcia was here for several hours. The several hours while we had to wait for chemo to bed dropped off at the hospital. That's a story for later.
I'm trying to make this as much like going to the Chemo Lounge as possible. So I'm trying to sit in the BarcaLounger a lot rather than being stuck in the hospital bed. I miss Kristen and my chemo friends, but having Mommy all these hours is such a blessing. She took the picture below.
I'm wearing the great, bright pj's Marcia bought me - the top anyway. It's embarrassing to say I'm not wearing the bottoms because Barlie ate the crotch out of them. Classy, right??
Trying to drink a lot of water and take the anti-nauseau meds. Now we're going to try to get some sleep. Lots more to report but it will have to wait until tomorrow!
Much love!!!
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