So I think it's finally sunk in.

Not really. That was a complete lie. It really hasn't sunk in at all. I think part of the problem is that I still feel like crap. (Oops. Forgot to censor.) Marta is sitting with me right now, watching me type. (I think that she is only here so that she can nab the first post.) She just flew back from the Bahamas and, while talking to her and catching her up, I started to feel a little guilty for not blogging for 2 days. I really did think that it would sink in sooner. I mean, I was all sorts of ecstatic on Wednesday. But when I woke up on Thursday, not only did I not remember that I was supposed to be happy, but I still felt like crap. Kind of put a damper on my mood. I'll get over it.
Anyway, Wednesday was the really exciting day so I will recap that. It started off with a tense ride to medical center. Followed by a tense wait in the waiting room of the PET scan office. Followed by a needle in the arm and a shot of radioactive sugar. Followed by another 30 minutes of sitting while the sugars distributed through out my body. The technician called this percolating. He thought he was amusing. (pause) He was not.
My mother and Aunt Patty, who had both accompanied me on this little excursion, quickly discovered that talking to me, while I was this tense, was not really wise. (The technician also discovered this. But since I am not related to him, I was even less polite.) After much tense waiting, I finally went into the donut. And yes, is was just a scary as I remember it to be. However, this time, instead of lying there petrified for the 25 minutes, I got pissed off at the technician again and started thinking of creative ways to demonstrate my displeasure to him. Don't worry. I didn't follow through on any of them...For the most part.
The next hour or so was spent in tense waiting in the doctors office for my appointment. However, this time I was distracted by the incredible pain in my back. Apparently, when designing donut machines, nobody takes the time to consider those who actually have to lay in them. They are very, very hard surface. And my bones hurt anyway from the nuelasta. They don't need any help to feel worse.
I was finally called into an office, in which we waited for another 10 minutes. When Dr. Ahmed did come in, he just stopped in for a second and then ran down to check my PET results. When he came back he was yelling down the hall, "When's the party?" This was slightly confusing. I couldn't figure out who he was talking to. Another patient? A nurse? Nope. ME.
This also left me confused as I had no idea what he was talking about. Then he said that the results were fabulous. Once again, with the confusion. I was about to ask him to quantify "fabulous", but he must have seen the confusion on my face because he jumped in with, "Complete Remision" The scans came back totally clean. Nothing glowing, no active tumors. My first question was when I could stop the chemo. No such luck though. I still have to finish out the last three rounds. Even though there are no large masses, the PET does not pick up individual cells. Up the upside, he has said that we won't have to do radiation. (And there was much rejoicing. I don't see you rejoicing, people. Show a little enthusiasm. Radiation would have been bad.)
This is about the time the perm-a-grin started kicking in. I couldn't stop smiling. We talked a little about some precautions that I will need to take in the future, not the least of which is sunscreen, hats, and not overtaxing during recovery. Actually I just threw that last one in there. Maybe the family will buy it. ...Oops...I really have to stop putting my nefarious schemes on the blog. Not a great way to sneak things by them.
I also have to have scans for ...well...ever. I will have alternating PET and CT scans every three months for two years, then twice a year, then at five years I will only have to have them once a year. The next fifteen to seventeen months are the key period though. If it doesn't come back in that time there is an excellent chance it won't ever come back. On top of that, my quick remission bodes very well for the future. Apparently, being that receptive the chemo means it is less likely to reaccur.
I'm sure there are other things to tell you. Things like my siblings' rather humerous reactions when they were called. (I had to tell Carol, to tell her first graders, that they were "happy tears" as she was in the middle of a reading group at the time. And I sent Katrina back to her after school program in tears and later to be pummeled by an angry german student when Kat didn't tell her about the results right away. Erica, who had been a little weepy when she called us (for her own reasons) ended up not crying because of my news. The only stable reaction I had from a sibling was Paul. I was actually able to carry on a coherent conversation with him. Thank god for big brothers.
After the requisite number of calls to family and those I consider family, I took a nap. Then I blogged. Then I went to choir. Sort of anti-climactic for such a momentous day. I know. You were all expecting a party. Well, I still can't drink so the party will have to wait.
Finally, some peanut gallery responses.
1. To those who wish me to continue to post. (Doug, Leon, Manny) I will do so through the rest of the chemo if for no other reason then to whine about my aches and pains to people who seem to want to listen. I don't know why this would amuse, but who am I to argue. We know I love the attention.
2. To Melanie: Chocolate always counts. And I'm thrilled that Luis even knows who I am. I think it's adorable that he prays for me.
3. To the Dewketters (tee hee. I love writing that) and all those I've worked with: thank you for the support. It's wonderful to know that you were all checking in.
4. Joan: Welcome to the blog. Better late than never. Actually that's not true. With this group of people you're probably safer staying away, their a little nuts. However, on to the question. For my Mom's 60th Birthday last Sept. we all decided to go to St. John's, USVI. So. that is where I will be headed with 20 to 30 family members three weeks after my last chemo. But besides that Marta has insisted that we go to a spa when this is all over and before I return to classes. I didn't put up to much of a fight. A weekend at a spa sounds really, really nice right now.
5. I want to thank everyone for their support. And prayers. You guys are great. Between all the prayer chains and the Texas contingent, I knew I would be ok.
That's pretty much it and I really am tired, so I'm going to go to bed. Talk to you later -Elizabeth

My 10% status finally comes in handy.

So, when ever they put me on a new medication, they always say, "these are the side effects. And these are the rare side effects, but don't worry, only 10% of the people get them." And sure enough, I get them. Any possible drug interactions, i get them. anything where only 10% of the people experience a problem...you get the idea. But this has finally worked in my favor. So, here we go. Are you ready?
Only 10% of the people who use R-chop (my chemo regiment) experience complete remission after three rounds.
(Take a deep breath. No, you're not reading this wrong.)
That's right folks. Fred is dead. The only thing that glowed on my PET scan was my heart, and that's supposed to.
I barely know what to say. I made him repeat himself three times in three different ways to make sure I understood. There is NO sign of cancer. I wish I could write eloquently at the moment, but besides not having the words, I have to go to choir. I probably won't post again tonight. Or maybe I will. There is more to tell, but I had to get the good news out first. I still need to process.
Thank you, thank you, thank you all for the prayers. Love, Elizabeth

Looking for a little positive energy.

Ok, this is it. I’m actually asking more of you people than usual. Do I want comments? Yes, of course. I always want comments. However, this time I’m also asking for some positive thoughts. If you pray, pray. If you don’t…I don’t know…cross your fingers, scatter some chicken bones…do a ceremonial dance. I don’t care. Just send the positive thoughts my way. Why am I wigging? Tomorrow I have my second PET scan. And believe it or not, I’m terrified.
Now, I know what you’re all thinking. Elizabeth doesn’t get terrified. Ah, ah, ah. That’s not true. I do, in fact, become frightened and, on occasion, I have been known to scare the s&!# out of myself. (Look, I censored!) However, those occasions are few and far between. But this,…this scares me. I should probably give you a little background on the PET scan so that you can all be terrified with me. It’s one of the donut machines. It is basically a full body scan. Hm, how to explain… So, your body is made up of cells. Cells use sugar as fuel. Cells with quick turn over rates absorb and burn sugar quickly while cells for the rest of the body are more gradual. Since cancerous cells are of the “quick grow” variety, they consume large quantities of sugar in short periods of time. So, for the PET scan, they shoot me up with radioactive glucose (AKA: sugar) then stick me in a donut for 30 minutes to see where I glow. Where ever the “glowy” sugar concentrates is the site of my cancer, and the size of the glow is proportioned to the extent of my cancer. This is also how doctors determine staging. I’m stage 2. Meaning it is in two sites in me. I don’t know the extent, simply because asking about it …when they did the original PET,…scared me. And since I had no basis for comparison it would have been a pointless discussion anyway. However, back to our original point, I have another PET tomorrow. And besides my sudden fear of enclosed spaces, I am dreading it. On some level I know it’s going to be good news. Logically, I know it’s going to be good news. I know that they must be smaller. I know that Fred is smaller. However, part of me still worries. And part of me is scared that …maybe…they haven’t shrunk enough. I’m no doctor, but is there a time table for these things? I’m half way through. Doesn’t that mean that I should show a …I don’t know…50% decrease in cancerous masses or something? What if it’s only 40%?Or less? If it’s more do I get to stop chemo early? Do the results from this test decide whether or not Dr. Ahmed will decide on radiation for me? , A course of action which he has already expressed in interest in not doing on someone my age and gender. (Something about long term side effects. Yay.)
It’s all going to be fine. I do know that. Really. That doesn’t mean it’s any less scary. On a terrifying meter it’s between finding out I had cancer, and ..oh..let's say…needles. Yeah. That’s about where it is.
I even had a nightmare about it. Which is, oddly enough, a mixed blessing. Sure the nightmare scared the crap out of me, but the fact that I am finely sleeping deeply enough to dream again is sort of …reassuring. Doesn’t change the fact that in my dream I was stuck in a dark tunnel underwater and could only watch the rest of the world go by through a plane of glass I couldn’t break, as I slowly drowned. (Shivers in reaction. I never used to be claustrophobic. Stupid donut machines)
On top of all this fun anxiety, I had a not great Monday coming off my prednisone. I spent way too many hours sleeping, and when I was awake I was …fuzzy. Amy calls it the chemo fog. But fog isn’t the right word. Fog implies that there is something clearly discernable. That muddled feeling of Nyquil. This isn’t that. I’m calling it the chemo hangover. Not that part of the hangover every one knows about. Headache, dehydration, blurry, blood shot eyes. No, I’m talking about the other part. After you’ve re-hydrated, the headache is gone and you have emptied the entire contents of a visine bottle into your eye sockets. There is still a feeling. You’re no longer in pain, it doesn’t hurt anywhere. You’re not sick. It’s just that something isn’t …right. That’s the only way I can describe it. Something isn’t right and my body knows it. I mean I guess I should take it as a good sign that my body recognizes when it is being poisoned and goes through the effort of alerting me, but it’s frustrating to not be able to explain to people why I’m irritable. Why I’m not “Okay”. (Don’t give me that look. I am not always irritable.) When people ask me if I’m alright, or how I’m feeling, for the most part, I answer with “It’s a good day”. And it’s true. I don’t go out on the bad days, so for the most part, I’m not lying. However, I’m not really telling the truth either. I’ve just redefined “good”. Trust me on this. My version of good and your version of good are no longer the same. My version of good now is more like…the nausea is not so bad, as long as I don’t move to quickly; the pounding headache has subsided to a dull throb behind my right eye; for the most part, my muscles are listening to me and I’m not going to fall down any time soon; my bones are aching but the Tylenol makes it bearable; and provided I don’t over exert myself I won’t need a nap for another three hours. That is my definition of good.
And to be completely honest. I’m a little ashamed to be posting this. I have to keep reminding myself that this is my blog and it’s for me to vent on. But …damn it…sometimes I feel like such a fraud. I should be jumping for joy. On the scale of cancer I have a …head cold. Maybe the flu. It’s treatable and my oncologist is incredible and quite literally world renown. People fly in from other countries to be treated by this man. When other oncologists make mistakes he’s the one that fixes them. If he says I’m going to be fine I should just suck it up and deal. But NO. I have to be the whiniest chemo patient ever. Amy did this and she has three kids, Jessica did this and she has children as well. Me. I am currently unemployed, not going to school and have no children to look after. I don't even have a pet to look after. This should be cake for me. I can’t even make it through the stupid solo at church with out taking 3 times that amount of breaths as I usually would. I mean…I realize that this is cumulative and that this week is worse than last week, but it’s still nothing compared to some who go through chemo. …It’s just such a …horrible way to have to cure a body. I understand that all chemo’s are different. I know that my bug juice is nasty stuff. Six rounds of that should kick my ass. But I should be able to handle this better. A third of lymphoma’s have no cure. I could have just as easily gotten one of them and only have been able to kick back and welcome the end. But I lucked out and got an easy one. Shouldn’t I be happier about that?

Sorry to rant. I'm done now. I’ll fill you all in on the results of the PET tomorrow night.
-Elizabeth

Here's the bike pump!

I'm still working on the reclining chair picture.

I'm bored. And sleepy.

I have nothing to do. And I'm whiny. Any one want to watch a movie? - Elizabeth

And the X-rays come back clean.

That's right. No further disasters have hit. They figure that my back and neck pain were probably from the neulasta shots that I recieve and maybe from overdoing it a little. I went back today for my neulasta shot and as per usual, it burns when they put it in, and now every bone in my body is screaming at me.
As for the rest of my day. Nothing to exciting. Mom woke me up at 8 for my morning meds. We're back on the prednisone (yuck) and then I started working on some new pictures. Unfortunately my web host is in the Bahamas. Not that this would normally be a problem. I could just email the pictures to him, but I have heard he has had some ...trouble getting settled. (Did they find your luggage yet, Steve? I heard that the one shirt you do have now has a ketchup stain. If it makes you feel better, I only laughed a little when I heard. ...tee hee) I figured I wouldn't bother him with my pictures right now. This is the part of the day that I would have liked to go to Amy's sit in the steam room, get a message, sit in the jacuzzi and take a nap on the couch. But nooo, someone had to go and get sick. And then get her children sick. Between Amy and Mom I will never be exposed to sick people, but it puts a small dent in my plans. Oh, Amy is feeling better and so is Sophia. Her birthday is today and every should give a little shout out. Happy Birthday Sophia!
Hm. I had lunch at noon, then fell asleep until 3. I was a little tired. Then mom and i went to get the shot and had dinner when we got back. The Muller/Weisleder familly made dinner tonight. And Amy brought by pulled pork last night. Thanks to both. It was great. Now I'm just getting in a quick blog before choir tonight. I'm feeling a little punky and probably wouldn't go, except for the fact that I'm singing a solo next week and havn't actually practiced it yet. oops. That's really all there is. Talk to you later. -Elizabeth

Did you ever hear the one about the bicycle pump and the catapult?

OK. Chemo went well. Read the whole post. I type this up funny for a reason folks, don’t skip to the end. It’s like reading the first chapter of a murder mystery and going to the end to find out who done it. It’s just not right. These aren’t cliff notes. Read the whole thing.
So, bicycle pumps and catapults.
Actually, we’ll get to that in a minute. First I’ll tell you about this weekend. It was a great weekend. It was loud, and busy and crowded and insane. It was a smaller egg hunt than usual - only 80 kids. We got up ridiculously early, hid the eggs, and then I assigned tasks. I had Brian and his cohorts working on parking duty. This is actually a new feature of the egg hunt. Three years ago we had some neighbor call the cops to complain that there wasn’t enough room for two cars to drive by on the street next to our house. (Honestly, who would call the cops on an Easter Egg hunt?) So the next year Brian, Evan, Casey and Broken Brian (York) made up my parking delegation, safety vests and all. It was also the year that my hands free ear piece made its debut. That’s right, the egg hunt has gone hi-tech. Since Brian and his friends all have Nextel’s it makes my life so much easier. I can check in and make sure there are no problems. They can check in when they need me to find someone to move a car. It also came in handy when they switched modes to supervision of children. I have finally passed on the scavenger hunt to Brian. I tried to hold on to it. I have been in charge of the scavenger hunt for the past 12 years, but, since Mom has stepped back from active participation in the hunt, I have taken over the overall hunt supervision. The scavengers are Brian’s now. It was a sad passing of the torch. (Sniffles, and gives a brave smile through the tears) Every once in a while a team would come up to me and ask me to check their list, and I would sadly send them on to Brian.
I had Carol, Katrina, Sue, Chuck and John on socializing and carrying detail. They greeted the hunters and made polite small talk with the grown ups as we know that this is not my forte. They were also responsible for relieving them of any baked goods or juices that they may have brought for the hunt. I had Erica and Drew inside cutting up cakes and bagels, and Mr. Bill was taking a nap after a very stressful morning of cooking us breakfast.
Marta was on Relay duty. The Relay for Life is an American Cancer Society Fundraiser that I have done for the past four years. I know, the ultimate irony. Anyway, I usually don’t raise more than $20 or $30. This year I was intending on doing better. So Carol and Marta came up with some great ideas. Carol came up with a free will donations Easter basket, and Marta decided on a 50/50 raffle. Both were incredibly successful endeavors. All told we raised $940 for the Relay for Life. Carol thinks that I should split the credit for the money three ways between her, Marta and myself. But I think I deserve full credit for my wonderful “guilt tripping” skills. Besides, I think it was a better plan as far as you guys go, because the original plan involved charging everyone $5 to comment on the blog. (Janette’s idea) A special thanks to Sarah Wilson who after winning the 50/50, gave half of her winnings back. (I guess that would make it more of a 75/25)
As predicted, after the Egg Hunt, everyone scattered. Some had errands to run, hockey games to attend, friends to see, houses to show off, and then all reported back to the house later for pizza and left over Chinese. As for me, there was no manicure in my future. I slept. Not that this is an unusual MO for me after an Egg Hunt, but I slept forever. My body had been telling me all day that I had been overdoing it. Finally, at about 12:30 it sat me down and gave me a stern talking to. (In other words I collapsed into bed and slept for four hours.) I woke up in time to catch the movie “Dogma” on Comedy Central. (I love that movie. Totally irreverent. Right up my alley) Halfway in Brian joined me and we chilled out, ate chocolate and watched the movie. He had gone with his friends to see the movie, “Lucky number Slevin”. As he was telling me about it, I was thinking about how similar in style it seemed to “The Usual Suspects”. Guess what. He has never seen “The Usual Suspects”. I know. Mindblowing. I have since promised that I will remedy this. It’s one of my favorites.
Funniest moment of the Egg Hunt, has to be Mark Yetter. He is seven years old and the most adorable motor mouth ever. On the morning of the Egg Hunt, my little industrious Mark, made a list. What kind of list? A list of potential hiding spots that he needed to check. And check them he did. I had only really paid attention to the front page of the list. As he finished checking an area, he would check it off his list. I was not overly surprised when I heard later that Mark was the one to find the Gold Egg. Later on, I found the list. Look in the bushes, check. Look in the flower pots, check. Look under cinder blocks, check. Look in the back yard, check. And then, on the back, …Find the Golden Egg, checked off. My jaw dropped. It was hysterical. I laughed so hard I almost peed my pants, it was so funny.
Sunday morning was also an early morning. We had handbell and choir rehearsal early, before church. Then we had the 8:30 service. I tried to catch a catnap in pastor’s office between services, but between someone (Chuck) fiddling with the sound system, the organ playing, brass instruments tuning, and the cymbals crashing, it was impossible to get more than 15 minutes. After second service, Diane and I went for a drive past her old house. We used the bike path as our pretense. We walked by her house, pretending not to be nosy as we looked in the back yard and tried to ascertain what sort of changes the new owners made. Then we continued to walk. I have to say though, we got some strange looks. We were the only two people walking the bike path in our Easter Sunday best and heels.
Finally, we made it to Carol’s house at around 2:30. It was a small group. Carol, John, Zach and Matt, Katrina and Chuck, Marta and Steve, Aunt Milly and Uncle John, Aunt Sue and Uncle Steve, Erica and Drew, Drew’s parents, and his sister and brother and myself. Not much to tell there. We had a new captive audience to entertain with old family stories. The Rhode Island car accident when we stole the troopers overnight bag (it was an accident, I swear), the time Lucy and I hit another car at Westchester Community College, (also not my fault), then the time I …never mind. I think that this might give you a bad impression. We also made some new memories. Including Appletinis and Matthew’s in the box. These are inside jokes. Only a few of you will get them. The rest of you will just have to wonder.
Monday was my vegging day. It included lying on the couch and watching TV, eating, (because that’s what I do when I’m nervous), and surfing the internet, (and yet I still didn’t post). I just didn’t feel like it. As I mentioned earlier, I was feeling less confident about this chemo. I don’t really know why. I was just antsy about this one. Maybe it was because I had such a busy weekend, I really forgot all about my chemo. Then all of the sudden, it’s time for chemo. It seemed a little abrupt. It was like, oh, you’re just like everyone else, you can do anything they can do, la deed dah., and then NO. You’re actually sick. You have to take your medicine. … I’m over it now. Besides, you don’t want to hear about that. I have much more interesting news. Fun chemo story time! (Claps hands in glee)
So, Janette (after being reminded of how much time she had to get to the house by my earlier blog) rushed to the house by 8:20. I rode to chemo with her because Mom and I have been rubbing each other wrong all week. I eat when I’m nervous; she grinds her teeth and gets snippy. Janette gets to play buffer. (Isn’t she lucky?)
After getting to Westchester, and dealing with a small insurance-referral-authorization-problem…thing, we went to the chemo room. Alas, no special room for us today. There was a transplant patient in the special room. Not to mention, it was a crowded morning so mom and janette, had to find seats elsewhere. But before all of this, they tried to get some blood from my port so that they could test my blood cell count, specifically my white blood cell count.
Now, for those who haven’t checked back that far in the blog or don’t remember…I hate needles. Despise them. I suck it up and give blood once a year, but that’s it. And that’s only because I’ve done that since I was 17. But if I can avoid being poked by a needle I do. Hence, the port. It pinches a little going in, but once in I feel nothing. It’s wonderful.
They flush the port with saline and then withdraw the needle to stimulate blood flow. They poked me with the needle and the saline went in just fine, but nothing came out. So they tried some heparin (blood thinners) to dissolve any possible clots and 15 minutes later made a second attempt. No luck. That’s when they brought out the bicycle pump. Just kidding. It was actually a small needle that Denise, the nurse practitioner, pumped like a bike pump. I kept thinking that I was going to inflate a float away. (I have a picture in mind for that one.)
After 30 minutes of fussing, they had to draw blood from my arm. Let me tell you, I was whiny. (Makes a pouty face) They were able to give me the chemo through the port though. Which is good, because the veins in my hand suck.
The catapult may also get a picture. I have discovered that the chairs outside of the “special room” recline farther back than the chair in the special room. They had me lie back so that they could fiddle with the port, but at one point, when I curled my legs up, the balance of the chair was disrupted and it tipped back nearly sending me flying out of the seat. It was a little startling, but probably the best thing that could have happened. After the stress that I was experiencing, and the insurance referral problem and the port not working, it was exactly the tension breaker I needed. Janette and I just started cracking up and Rita, (a fellow chemo-ite) just laughed at us.
The rest of the chemo went smoothly enough. It was the first chemo that I didn’t nap during. I was busy writing up this blog post so that you people wouldn’t whine. When we were almost done I was so excited to get out of there, but then I had to go and open up my big mouth. (Stupid, I should never talk. It always gets me in trouble) I mentioned in passing that I had recently started experiencing severe back pain in my spine and neck when ever I lay down. I mentioned this to Betsy, the nurse, thinking that she will say,”Oh, that’s normal, it’s from the neulasta. It’s just the bone marrow regrowing.” Instead she gave me a confused look and went to get Denise. Later on I explained it to Denise (nurse practitioner) and she also seemed confused as it was not a symptom that she had ever heard before. So, she then called Dr. Ahmed. 15 minutes later I am downstairs with a prescription in my hand for x-rays of my entire spine and neck. I don’t think that we’re worried, it’s just that things don’t seem to be working out for me lately, so any deviation from the norm is a bad thing in my book. Although as per usual, there is a silver lining to my rather dark and ominous rain cloud. I made friends with the x-ray tech. Well, not really friends. I don’t know her name. But you all know me. I can make a really good first impression when I want to. I jokingly asked if she could see my port in the pictures that she was taking, and low and behold she could. She asked if I wanted to see it and I said “of course”. Now, I already now what it looked like but it was still cool to see it in the context of my ribs. I mentioned, in passing, that I would love to get a copy and that maybe Dr.Ahmed’s office would give me one the next day. She immediately asked if I wanted one right away and proceeded to print me out a film. That’s right. I have x-ray film of the port. Aaaannnnndddd. As soon as I figure out the best method I will post a picture of it on the site, so that you can all see it too.
Alright, this is a really long post and I’m running out of steam. I’m going to go crash now. Hope you all find this as amusing as I do. - Elizabeth

Number 3

I'm leaving in about 15 minutes for my third chemo. Three of six. Halfway through, hopefully.

For some reason, I am more nervous about this chemo than I was about the first two combined.

I'll talk to you all later. Promise. - Elizabeth

And the Hunt is on.

So. The insanity that is my family. It started over 40 years ago in Yonkers. It was maybe...2 dozen eggs and only 4 children (my cousins David, Barbara, Sue and Steve). My mother started the insanity and it has carried on...And it has grown. Large. It is now 1000 eggs in the backyard of the Mahopac house. There are 30 to 50 families that come to hunt. It...is...Insanity! Over the years my mother has slowly started to work her way out of the picture. Meaning, that it falls to the cousins. Bauerlein, Stefunek, Prazenka, and Havlik. And I guess we have to add Fitzpatrick and Miller.

The Egg Hunt itself is actually a pretty cool day. It's just all the planning. There is sooo much planning. On the upside I am taking full advantage of my "invalid" status this year. I made all of my slaves do the work. Friends...I meant friends. (I gotta stop calling them that.) So yesterday, we were waiting for Erica to show up. Her flight was only an hour and seven minutes long, but it was delayed. A lot. She was supposed to take off at 4:30. Instead it didn't take off until 7:30. So, after Maundy Thursday service, Mom and I went and picked up Erica. She was whiny about having to wait for us so we spent the last 15 minutes of the ride to the airport with me giving her a running commentary. (Ok Erica, we just moved into the left lane, we just saw a sign for the airport, we're at the exit...) We got back at around 11 but I was so wired by that point that I ended up staying up till 2ish. (And yet I still didn't blog. I'm just bad.)

Today I was intending to sleep until noon, as usual, but Erica woke up bored and just started to bother me until I would come upstairs and play with her. (Her version of "playing" consisted of bugging me, over and over, until I would paint her toes.) I guess it was OK that I got up that early. It gave me time to prepare for the mayhem that followed.

My friend Diane arrived from Virginia at about 12:30. She came with presents. One gift for each day she was staying. This is how I should always be treated. (Just kidding. I think.)
At 2:00 my minions, er..friends...and the youth group from church came to the house to stuff the 1000 eggs. I left Diane to supervise while Brian and I went out in the back to work on the Scavenger Hunt list. I think that this might be the year when my scavenger hunters figure out that I use them to clean the litter out of the woods. When I came back inside I found Diane barely keeping up with the stuffers. She was actually working up a sweat. The kids finished stuffing at around 3:30 and then I abused them even more by making them give me massages while I typed the first section of this blog. (Gives an evil snicker...it would be an evil laugh, but they're still here and they might catch on.)

Tonight the insanity continues. After church we go out for Good Friday dinner. Family tradition. We go out for Chinese. Sue orders seafood for those who won't eat meat. However, according to Charlie J. I'm a heretic anyway (or was it pagan). So I will be enjoying cashew chicken. After dinner, which goes quite late, we all head to our respective homes. The next morning, EARLY the next morning, we wake up and head outside. I think that I have 8 people hiding eggs for me. We have six different colors, several large eggs, and the Golden Egg (ohhh, ahhh). While we're out hiding eggs, Mr. Bill (cousin Bill) is inside cooking us breakfast. People start showing up at 9:00 and the hunt starts at 9:30. It usually goes until noonish, and then the family chills for the rest of the day. Some people go for a walk, or a bike ride. Some will probably go and tour Katrina's and Chuck's new house, and some will fall asleep on the couch. I might go and get a manicure. Just a thought. After everyone is done unwinding they all head back to the house for leftover Chinese.

I'm tired of writing. Time for some shout outs. Evan, Caitlin, Sam and Diane thanks for the backrubs. Nicole thanks for the help. Allie, Caroline, Joe, Anna, Evan, Casey, Kim, Patrick and my second in command, Brian, THANK YOU. I love it when people do things for me. (Since you all can't hear what's going on while I type this, the peanut gallery currently surrounding me is making sarcastic comments about everything I write.) OH and a special thanks to Samantha who chopped off her hair for Locks of Love today. I think that's pretty much it. Besides, I have to start getting ready for church soon. I'll let you all know how the hunt goes. - Elizabeth

Don't worry. I have already been yelled at.

I know. I didn't post when I said I was going to. I forgot. Well, that's not really true. I put it off...and then I went to bed. Oops. Anyway, I'm posting now. And I think I'm going to take Katrina's advice and stop giving you a heads-up as to when I'm hoping to post. Making plans very rarely works out for me. It's not like anything really eventful was going on. I'm feelling OK, in fact, if it weren't for a headache that seems determined to stick around, I feel ...good. (Writes this cautiously as she is afraid she will jinx it) I've made up most of my sleep and I even did some errands...by myself. Ahh. So there is something I can talk about. I usually despise doing things for myself. It is so much easier to have other people do things for you. However, now that I can't do everything for myself, I am starting to want to. I know. The weird paradoxs that come with cancer. Poison body to cure it. Feeling sick means the chemo is working. Wanting to do things for yourself when you would normally love to have others do things for you.
I discovered that I wanted to drive my own car. You see... I had this parking ticket. Don't roll your eyes. It really wasn't my fault. ..Stop laughing. It wasn't. My inspection sticker had fallen off my window and I got a ticket for expired inspection while I was in Mount Kisco. I sent in everything I was supposed to but they kept messing up and I kept getting tow notices. And in all honesty this little parking ticket is so far down on my list of priorities at the moment that I really shouldn't have cared about it at all. However, it presented me with an opportunity. I could drive my car to Mount Kisco, yell at some people and maybe, if I still had energy, pick up an Easter outfit. (The one I never did manage to pick out with Marta after my last chemo.) AND, since I was feeling okay, I could do it all by myself.
Well, once I convinced my family. That was, beleive it or not, the hardest part of the entire day. Convincing my family that I didn't want them with me. I probably could have done that better. I think maybe some feelings were hurt. If they were, consider this a really, really backhanded apology. But how do you explain that your tired of being looked at as an invalid to people who continue to insist that they don't see you that way? I was feeling good for once. I wanted to go out and do something for me...alone. I didn't need a babysitter ...or a driver. I have a cell phone. I know my own limitations. I mean, this is me. I'm the first person to admit when I don't feel like doing something.
For example. Brian (cousin Brian) was doing an Eagle Scout Project. He's putting up mile markers on the bike trail. He needed adult supervision and asked Mom and I. (Once again, stop rolling your eyes and laughing. Yes, I am an adult) Once I actually spoke to him and figured out how much walking and standing around would be involved, I figured this was not something I would be up for. I love that section of the bike trail and mom and I have walked it before, but my longest walk since starting chemo was all of 45 minutes and left me exhausted. I'm not the person who is going to push herself past her limits.
Anyway. That was yesterday. Today I went with my friend Amy to NorthEast Radiology. She had some scans she was getting done and I was bored of sitting at home. Besides the parts where we almost died because Amy drives like a nut, it wasn't a bad day. I caught up on celebrity gossip in a magazine while Amy was stuck in a "donut machine". Hmm. I havn't used that one before have I. OK. Quick explanation. All of the machines that they stick you into for scans tend to be round with a hole. CT scan, PET scan, Mugga scan, MRI. They all look like donuts. Not to mention are very bad for people who are claustrophobic. (Sue you would hate them) Anyway, while Amy was in the donut I was reading some magazines. Actually, Amy found a pretty funny article about cancer patients before she went in that I finished reading. It was something like 10 things you shouldn't do, or say to cancer patients. It starts off with not telling your own story unless it has a happy ending. The author tells about how everytime she told someone that she had cancer they would come back with an aunt, cousin, best-friend's sister, who had cancer and was fiesty and brave and learned photography and oil painting during her downtime from chemo while helping in homeless shelter and curing world hunger... etc. And then when the author asked about how the incrdible brave, not going down without a fight person was doing, she often would find out that they had died. Now, I have to agree with the author on this point. You may have a great story on your hands but think through to the end. Happy ending? No? Then don't share. I thought it was funny. (I know, I'm a little twisted)
After Amy's scans we went out to lunch. She had a margarita and I watched on in envy. It was a great way to break up the day. I think she felt a little guilty about having a drink in the middle of the day for no real reason, but my philosophy is that anytime one is poked with needles and has radioactive isotopes dumped into their bloodstream, they deserve a little treat.
I really don't think that I have anything else to write. I have a lot of work to do for the egg hunt. But I think I'll save that for tomorrow's post. Just in case nothing interesting happens. Talk to ya later - Elizabeth

Ok, so you know that sensation that you get on the first drop of a roller coaster.

You know the one. You feel like youv'e left your stomache at the top of the drop and it takes a good few seconds for it to catch up to you. Yeah. That feeling. Eventually, you are prepared for the sensation and it doesn't bother you as much for the rest of the ride, because you know it's coming. The only time it really catches you off guard is that first drop. Now, try having that sensation all the time...with no warning. It just shows up. Not when your moving or doing something in particular, not after you've just eaten or before you eat. It just happens.

The doctor's did a much better job this time of keeping me from being sick, but that doesn't mean its perfect. On the upside, this seems to be the only real problem. I'm tired. But once again, not so unusual. I blame Paul and Amy. They stopped by yesterday and watched Family Guy DVD's with me. You should all blame them too. They kept me up. Sure, the fact that I was still on the Prednisone probably had something to do with it...and maybe the fact that I had to get up for church at 7. Especially, since I haven't gotten up before noon the entire week. Okay. Maybe it's not fair to blame Amy and Paul. Kidding aside, I love company. Especially since I think my mother is contemplating locking me in the house so I can't get sick. Just call me bubble girl.

I had a pretty boring weekend overall. I really did nothing of import on Saturday. Well, that's a complete lie. I actually got really pissed off at my hair and had Karen shave it. Yup. My hair's all gone. It's a little odd. But my scalp no longer hurts and I can take a shower with out worrying about my hair clogging the drain. I know. Not a pleasant visual. Not to mention, I was shedding all over the house. So, it's gone. I hope it will be back in a few months. Don't worry Janette, I have a lock for you. The rest of the day was spent in mourning.

On Sunday, I woke up ridiculously early. Our church choir was singing at both services for Palm Sunday. It wasn't really a problem except that there was quite a bit of standing around. I was just tired and a little queezy. I had these Ginger candies that I'm supposed to eat when I get sick, but they are nasty. (Nate, how did you stand them. Bleh) I mean they worked. But I'm not sure if that's because they actually settled my stomache, or because I was so distracted by the taste that everything became secondary. I'm leaning towards the latter.

Anyway, I just thought I would update quickly. I do plan on updating again this evening. This is just to keep the phone calls away. AND to ensure that the comments section doesn't break. 40 comments people. If I didn't love the attention I would be worried. Later -Elizabeth

I'm ready to talk a bit

OK. So I was a little upset about the hair thing. Still am. But, I'm getting over it. Especially now that I have discovered how painful it is to lose my hair. I'm not just talking about emotional. I'm talking physical. It hurts. It's like little pins and needles poking at my head. It is VERY unpleasant. For awhile I thought that I would try to keep my hair as long as possible. Now, I'm this close to shaving it all off. (Karen, your available right?) These are things that should be included in the chemo pamphlet. I think it would make it easier for people. Yes, you are going to lose your hair, but by the time it happens it's going to be pissing you off so much that you're going to want it gone.
Anywho. Since I'm finally ready to talk a little, I'll fill you in on the most recent chemo. On tuesday morning Marta, Mom and myself set off for Westchester. It was a much more pleasant ride considering that the port has healed up. (Did I mention that the tape and glue finally fell off?) The whole thing was significantly less nerve racking than the first time. We got the "special room" again. I'm still not sure why. I'm hoping that it's because we bring so much stuff. Then I can just continue to do that and get special treatment. We all know how much I like special treatment. When Betsy hooked me up to the IV I didn't have the urge to hit her. It was much less painful. Which is a good thing because I was a little distract by the funny colors that Marta's face was turning. Apparently watching the needle go into the port isn't a pleasant sight.
They started me off immediately with the steroids that prevent my reaction to the pre-chemo and in doing so, were able to start me at a higher dose and cut about an hour off of the whole process. For the most part I slept. It was actually kind of boring. Marta and I played a word game for awhile. Mom tried to play but it didn't really work out.
I do recall that at some point Denise, the nurse practitioner, came in and asked if she could show someone my port. They will never make that mistake again. The woman was only a few years older than me and just like me deathly afraid of needles. Now, I think that I am a very sympathetic person, but I wasn't about to lie to her. SHE was the one that asked if it hurt, I just told her the truth. Yes it hurt, but not as much as the bone marrow biopsy. How was I to know she hadn't gotten that one done yet? That she, in fact, was on her way to have it done with in the hour? Oops. I'm not quite sure exactly what else I said, but I'm sure mom and marta will fill you all in. All I know is that woman left my room looking anything but reassured. I guess it's a good thing I didn't take out the laptop and show her the vampire/needle picture, huh? See, that showed some restraint on my part.
After the chemo I had a very interesting reaction. As most of you know, I am NOT a shopper. I hate shopping. In fact, if I had a choice between shopping and chemo, I chose chemo. However, after the chemo all I wanted to do was shop for scarves. And maybe an outfit for easter ...and possibly a new skirt...maybe some sandals. I know. Insane, right? For a normal person chemo wipes them out and they go home and sleep. Not me. I grabbed marta and we went shopping.
Another interesting side effect, it made me very social. While Marta and I were shopping we ran into Mrs. Wyrostek. We stopped and chatted for a bit, and she mentioned that she was having trouble getting onto the blog. So I offered to email her the link, and the entire conversation was being overheard by the cashier. Later on, as marta and I were checking out the cashier asked about the site and, in totally odd and social non-Elizabeth behavior, I offered up the information about the site and struck up a conversation. I know, weird? If she happens to check on I hope she leaves a comment.
The rest of the day was uneventful. I finally got tired and went home and, while modeling the scarves for my mother, discovered that my hair was falling out. This sort of put me off my blogging. Sorry. The next day Katrina took me down to Westchester for my Neulasta shot. Once again, just as painful. It burns going in, and with in the hour my bones start to ache. That night was church and people got their first preview of Elizabeth with scarf. I think it went well. Since I think the wig will probably itch, the scarf look will be the one I'm most likely going to be going for. That nights choir rehersal was pretty hellish though. Haha. Choir rehersal, in a church, hellish. Ha. Okay maybe that was only funny to me. Not only are we working on all of the music for holy week, but he kept us their until 11. I shouldn't really complain, I fell asleep on a pew. I only woke up for the last song. (A horribly canned music gospel funk rendition of the Hallelujah Chorus.) Not a pleasant evening.
Thursday I slept until noon. With the occasional pill break. I then kind of lazed around for awhile until Brian called. (Cousin Brian) He came over to help me count the eggs for the easter egg hunt. I fill you all in on that some other time, but just so you know there are over 1000 eggs to be counted. Don't worry he was fed for his trouble. Then sent home so that I could watch CSI.
Then today I again slept until noon, with the pill wake up in the morning. Then I spent 2 hours on the phone with both unemployment and my school trying to sort out various problems. I think that is finally taken care of. Then Sam DeGraffenried came over with a plate of brownies for me. And how do I thank her? I put her to work fixing the Relay for Life sign that I need to have done for church on Sunday. In fact, she's still here. I'm think I'm going to keep her here until it's done. Shhh. Don't tell. Oh wait. She's looking over my shoulder. Huh. That could be a problem. Don't worry I will feed her too. I feed all my slaves. Friends. You know what I mean. That's all for now. I hope your all caught up. Don't forget to leave a comment. I live for positive reinforcement. Like my mother said, "Visiting the site without leaving a comment is like watching public television without writing a check to support it." Leave me comments.
Do we think I'm getting too demanding?
Talk to you later. -Elizabeth

Two down, Four to go/ AKA - Hair Problems

So. Yesterday's chemo went well. Marta and Mom both came with me and, besides Marta's squeemishness at the needle going into the port, both came out of the experience unscathed. Not so much for me. Last night my hair started to fall out. I guess it's a good thing that Marta and I went shopping for some scarves. I'm not really up to telling you all about this, but I am finally starting to see the humerous side of my reaction to the last chemo. So instead you will finally hear about the first chemo treatment. Maybe, in two weeks, after my third chemo, I'll be ready to talk about the hair.

So, for my first chemo they put us in a seperate room. I'm not sure if they thought that I looked like a trouble maker or it was the fact that between the three of us, (Mom, Amy and myself) we looked as if we were moving in, but somehow we snagged the primo room. (Just to mention, we got this room again. I think that I will continue to have to bring multiple people with me to ensure that we can snag it.) Anyway, once we were "unpacked" with a portable DVD player, my laptop, cards, and other such sundries, my nurse, Betsy, got down to buisness.

First she hooked up a needle to my port. As I had only gotten the damn thing the day before it was still a little on the sensitive side. It took all I had in me not to deck her with the hand that wasn't being restrained. After starting me on some saline to hydrate me she hooked up the pre-chemo. It's like the peanuts at the bar. You have a handful of them, and then your body is craving a beer to counter-act the saltiness. Same idea. They give me this stuff to prepare my body for the chemo. And it makes the chemo more efficient. However, the prechemo is the longest part of this whole experience, mostly because 10% of the people have a bad reaction and need to get a steriod shot, so they start the dose really low and gradually work it up every half hour. Now, I know what your thinking. Only 10% get this reaction. Those are pretty good odds. But this is me were talking about. This is the girl who went from having a "swollen gland" to a "cyst" than to Hodgkins Lymphoma and finally to Non-Hodgkins. Did we really think I was going to duck this??

Back to the story. I made it through the first 4 increases with out incident. In fact, even I began to believe I might not have a reation. (I know, I know. I should know better than to be an optommist. It just doesn't work for me.) It didn't actually seem like I was having a reaction. I just sort of got a tickle in my throat. So I drank some juice and coughed a bit. A few minutes later the tickle was back, this time a little bigger and now my throat was really dry. I had some more juice and really gave a good cough to clear my throat. Only problem was my throat didn't clear. After a small coughing fit I finally asked Amy to pass me the symptoms list that comes along with the medication. Hmmm. Shortness of breath? Not really. Lung congestion? Nope. Abnormal heart rhythm? Naha. Low blood pressure? How the hell am I supposed to tell that? Fever? Not that I noticed. Rash or sore joints? Not yet. Nausea? Nope. Nothing about a tickle in the throat or a cough. Of course it's now been close to 15 minutes and the tickle in my throat has turned into a hairball of unimaginable proportions. I finally realize, through my drugged out benedryl haze, that something isn't quite right and I ask Amy or Mom, I can't really recall, to go and get Betsy. Betsy walks in just as the hairball is starting to REALLY affect my breathing. She looks at me coughing and asks, "So, do you have a tickle in your throat?"
Now, it might just be me, but if the first question asked by the nurse to find out IF I am having a reaction is whether or not I have a tickle in my throat....maybe this is a symptom that should be included on the list. I casually, (read angrilly and panickedly) inform her that it was a tickle in my throat 15 minutes ago, and is presently a hairball blocking my airway. I then proceed to lose the ability of speach because I'm coughing so much. Betsy, unperturbed by my surliness, calmly turns off the drip and retrieves a steriod that she immediately injects into my IV. Only problem is, that it's about 10 minutes to late to stop the rest of the reactions from happening. All those previously listed reactions? Yeah... Now they show up. And it short order too. In the space of 2 minutes I go through ALL of them. Then the steriod kicks in and they literally all...go...away. As much as I complain about the fact that I have to poison my body in order to heal it, the wonders of modern medicine never really cease to amaze me.
Once I had received the steriod, we were able to start the drip up again. I had no further reactions and the rest of the pre-chemo went smoothly. Of course, I am now planning a little bit of hospital vandalism in which I go through all of their "symptoms flyers" and add "tickle in the throat" to the list. I won't get in trouble for that...right?

The only other "funny" incident worth mentioning had to do with the chemo that I call "bug juice". Why do I call it "bug juice"? Two reasons. The first, its that it is the pinkish color of the "fruit flavored" bevarage that you used to get at summer camp. And two, calling it the "stuff that is going to make my hair fall out" creeps me out a little. So anyway, the bug juice is NOT a pleasant chemical. I have had Amy telling me about it the entire ride up. In fact, she could barely look at it when they brought it in the room. (For those who haven't figured it out, Amy has already gone through this.) Betsy brought in two rather large syringes of this stuff, plus a smaller one of "the clear one". (You gotta love the names I give these things.)
So, to give you a little background. Or to at least give you the same background that I had had up to this point, the bug juice is pretty toxic. It isn't delivered through a drip, but through a push. In other words, Betsy would actually stand there and push the plunger of the syringe down while it was connected to my IV line. When Amy told me about her experience she explained how they had to constantly stop and check to make sure it wasn't leaking. They asked her if she had a burning sensation in her hand. (She didn't have a port, but was hooked up to her IV through the back of her hand) So, basically we were all prepared for these "pushes" to last awhile. Amy said it took a couple of minutes to do it. So, Betsy hooks me up and as she does so she gives me the quick explanation that this will be the one that causes my hair to fall out, yada yada yada. This is the point where I tuned her out and decided that I would refer to it as bug juice. Better for my own piece of mind. Then she starts the push. ...In one smooth, not quick, but certainly not slow movement she pushed the plunger all the way down... It took less than 20 seconds.... When I tell you that mine and Amy's eyes bugged out, I'm not down playing it. I swear, the only thing going through my mind, was that this stuff was going to pop out of my chest like that that Alien out of Sigourney Weaver.
As it turns out, having the port allows them to bypass the whole, "is the toxic bug juice eating through your veins" thing. Once again. This is something that I would probably liked to have known before hand. Honestly I have spent more time in the last two weeks imagining things popping out of my chest or springing leaks...it's ridiculous.

So, that was the first chemo experience. Nothing too dramatic. But at least my sense of the insanely-ridiculous has finally kicked in and I can look back at it and laugh. (Well laugh and plot my revenge. You know. Same difference)

As for the current moment. I'm not doing to badly. I had a small upset stomache earlier but besides that I'm OK. In fact, my meds are kicking in and so I'm going to crash now. I hope this makes up for some of my more recent, lame attempts at blogging. - Elizabeth

Everything went fine

Just checking in to let you know that everything went well. I'll be giving you all a full update later but right now I'm on my way out the door with Katrina to get my Neulasta shot. (White blood cells) I would have written earlier but someone (Amy) let me fall asleep on her couch for two hours. You can all blame her for the late update.
Anyway, you'll get more info soon. -Elizabeth

Sorry that it's been awhile.

I know, I know. I haven't done a real post in forever. Bad Elizabeth, Bad Elizabeth (smacks her own hand and gives herself a stern talking to.) In all honesty, not much is going on at the moment. I had a really good weekend, at turns relaxing and hectic. I went shopping with my cousin, Marta for a little while on Saturday and I went over to her and her husband, Steve's house for movies later. Katrina and Chuck joined us there, late. Then, Sunday was Church and an afternoon watching a movie with my dad. Today was just the laziest day in the world. I only left the house once. Although really, I'm starting find less and less reason to leave the house. If I'm here long enough people stop by to see me and give me things. Liked baked goods. (Thanks Karen) This could end up being a problem for you. You keep doing things for me and, honestly, what kind of silly girl would I be if I didn't take advantage of that. One of you blogger followers will one day end up in trouble if you keep up with the offering "to help with whatever I need" thing. Soon you'll turn around and find me lying on your couch with a bell in my hand and you're responding to it by catering to my every need and whim. Just consider this a warning. I will take advantage. That gives me an idea for a picture. (Hmmm))
Anyway, today is my second chemo. Mom is coming with me again, as is Marta. I'm sure it will go fine and I find myself with very mixed emotions about it. This will more than likely be the chemo that knocks out my hair, however, this will also be the chemo that greatly reduces the symptoms that I have been experiencing from the cancer. (Specifically, night sweats, itchiness, irritability...oh wait. That last one is just me.) In all honesty, losing my hair and the pain of the treatments themselves is a price I'm willing to pay for a decent nights sleep and to not feel the need to scratch off my flesh. (Once again, I leave you all with such interesting mental images. I don't know why you all continue to check this thing)
I'll post again after the chemo and let you know how it went. Maybe I'll have a new picture for you. Later -Elizabeth