27 November 2008

happy thankzgiving

I have so many things to be thankful for this holiday... Unfortunately, one of those is not rising blood counts. To be fair, they did go up - just barely. So there will be no shopping for me on Black Friday, no movies with the family, no hugging anyone.

Happily, my Mom got to come up and spend Thanksgiving with John and me. We had a lovey relaxing day and a delicious meal. I even got Madame Scrooge to help with some Christmas decorating!

And I finally got to eat a Brussels sprout!!! Mmmmmmmmmm.... (Yes, MT Bee, it was cooked well!)

Hope you all had a good one too!

20 November 2008

welcome to my nightmare nadir

Those of you that aren't medical-types will surely be asking yourselves "what's a nadir?" I asked myself that very question, but the internet is a wonderful thing! And it also helps that I have an inside source (thanks MT Bee!)

OK, so in a nutshell, a nadir is basically a low-point. A bottoming-out, when all my blood counts are at their lowest point.

Chemotherapy is designed to attack any fast-reproducing cells, since cancer cells reproduce quickly. But there are lots of other cells that reproduce quickly that are killed as well: the lining of the mouth and intestines, hair cells, etc.

Blood cells all develop from stem cells in bone marrow, and stem cells usually don't reproduce quickly. But the blood cells that develop from stem cells go through a period when they divide rapidly, and this is when they are vulnerable to being destroyed by chemo. As the mature blood cells die off, and the newly forming blood cells are being killed off, the nadir point is achieved.

And that is where I am. The biggest dangers are from threat of infection and bleeding. I am susceptible to infection because I am not producing enough white blood cells. And bleeding is an issue because I have very low platelets so my blood won't clot. Thus, basically I have to live like a hermit for a while. Can't leave the house, can't be around germy people. I have to be really careful what I eat. I have to wash my hands more obsessively than ever. I have to be careful not to cut myself. Can't use knives, scissors, razor, nail clippers. Have to be careful not to scratch myself, or to be scratched by my cats.

On top of that, my hemoglobin is also low. This makes me feel tired and worn-down, and makes the other lingering side-effects feel that much worse.

So not only am I living like I'm the boy-in-the-bubble, I also feel on the crappy side. I feel like doing nothing. I lie in bed watching TV with the Kittens until I get so sick of the site of my own bedroom that I migrate to the living room. But after a while, I get sick of being there so I head back to the bedroom. Meals are boring and flavorless, designed simply to keep me sustained rather than for enjoyment. And because I'm listless, I rarely turn on my computer. Which should be shocking to any of you that know how addicted to being wired I am. I apologize to anyone that was expecting a prompt response to an email and didn't get one - I'm reading emails on my phone, but can't respond to them that way.

But the bright side is that today is the END of my nadir, which means I should be starting to reproduce stem cells and thus blood cells any time now. I should be completely back to normal in three to four weeks, but between now and then my counts should increase steadily.

Don't you feel educated? I expect thanks if any of this info helps you win at Trivial Pursuit!

17 November 2008

holy crap, i'm actually done

WOW!!! Can you believe it?!? I'm having trouble believing it, lemme tell you.

Those of you keeping up with this blog regularly might be wondering why it took me so long to post this entry, considering my last treatment was five days ago. Five long days ago, November 12, 2008.

Well, I'll tell ya. I wasn't whistling dixie when I said five LONG days. I spent many of them sleeping, most of them in my pyjamas, a few of them battling severe nausea and... let's call it "uncooperative digestion".

But today, I feel good. Today, I actually got up early, showered, got dressed, put on makeup, and went to work. And I actually stayed there all day! It was a good day :)

But last Wednesday, November 12 - not such a good day. Not bad, but worse than expected.

I had hoped to get Nurse J again, even if it meant that she'd have to stick me twice to access my port. And I did get Nurse J, and she did have to stick me twice.

I had hoped to see Oliver before going under anesthesia. And he stopped by to wish me well.

I had hoped the anesthesiologist would give me a good dose of Dexamethazone and Versed. And here's where I stopped getting what I hoped for. Yes, I got the Versed. But the Dex was a no-go. Dex is a steroid that makes me feel - after the procedure is all done - like I can climb a mountain. It means that when I get home from my Brachytherapy, I will sleep for a little, but once I wake up I will feel just fine. Instead of the Dex, I got Reglan. Reglan is for nausea. I should have opened my mouth and insisted on the Dex. But I didn't...

I woke up in recovery feeling the usual pain from the catheter. Let me explain:

*** WARNING: GRAPHIC! Look away if you are squeamish about female stuff, or painful stuff, or gross stuff ***

OK, so basically while I'm under anesthesia, Dr F inserts three lollipop-shaped plastic holders. The big parts of the lollipops are in my uterus. The stick parts of the lollipops are sticking a few inches out of my hoo-hah. Not a pretty picture, I know. But the reason is that they hook me up to this contraption that places the radioactive seeds into the big parts of the lollipops without anyone having to be too involved in my private area. Anyhow, the big parts of the lollipops are in my uterus, which means to get in there they had to be pushed through the very little opening of my cervix. This is why I'm placed under anesthesia. Because it would hurt like hell otherwise! Now, once they are in place, they pack the hoo-hah with... well, packing to make sure everything stays in place. But they pack it so tightly that everything is sorta shoved up against the sides. And "everything" includes my urethra, which has by this point been catheterized. And since it's all being shoved, the catheter really really hurts.

*** OK, Graphic's over, you can look now! ***

So, I'm in recovery with a nurse I don't recognize and didn't have the manners to ask her name. Normally (remember, I've gone through this four times now, and a routine has been established), I will be given Morphine, and then Demerol, and finally Vistaril. This time, Nurse X keeps asking me "How much pain are you in, on a scale from 1-10?" And I say "8 or 9." So she says "Let me give you some morphine." And the next time she's supposed to give me Demerol, but instead she says "Let me give you more morphine." And the next time she's supposed to give me a shot of Vistaril in the thigh, but instead she says "Let me give you more morphine." And I'm sure there was another time, and you guessed it, "more morphine." And because all that morphine makes most people puke their guts out, she gives me an extra shot in the arm of Phenergen IM - an anti-nausea drug. And despite all the morphine, that sucker hurt like the dickens!

I even have a nice shiny souvenir bruise - click here if you'd like to see it!

But once I got to the ROCk, and the treatment got underway, everything went like clockwork. I listened to my mp3 player, chilled out in the nap room, my treatment lasted about 8 minutes, the contraptions were removed, and I was free to go home. But oh man, the morphine was hanging on. And hanging on. And hanging on.

I slept until Friday, basically. Obviously, I got up periodically to eat, drink, pee, etc. But mostly, I was down. I spent some waking moments wondering how anybody ever could be hooked on opiates, seeing as how they make you ssssooooo ddddooooowwwwwnnnn. It was AWFUL!

Saturday, I was awake but very fatigued. John's mom and her friend came to visit and I was awake enough to sit and chat with them for an hour or so out in the back yard (such nice weather). But after that, I needed a little lie-down.

Sunday, the nausea was back. In FULL FORCE. I was a mess! I was devastated - here I'd been hoping that each day I'd feel a little better, but now I'd hit such a set-back. I couldn't believe it.

But then, after dinner, I started to feel a little better. And by this morning, I had energy and I felt good enough to write this blog :)

So, here it is folks! The treatments are ALL FREAKING DONE!!!!!!!!!

Now, I get to wait. I have follow-up appointments on Dec 3 and Dec 10, and then I'll know more about how well all this radioactivity has worked on this cancer.

But until then, thanks so much for everything! The well-wishes, the encouraging emails, the cards, the care-packages, the good karma...

Thanks for all your LOVE!

10 November 2008

the penultimate supper* treatment

Well, after last time, it is nice to be able to make a good post again!

Me and the blankie Julie made for me (note the Tinkerbell border). Those of you lucky enough to have a hand-made Julie blankie can appreciate how special this gift is. Thank you so much, Julie!

I got my fluids on Thursday, along with an antiemetic. It really made me feel much better. But I was still apprehensive about the weekend. John was going out of town which would leave ma at home alone. I wasn't prepared to deal with any emergencies that might pop up. So my Mom and Julie came up to stay with me. I felt well enough that we were able to have fun playing games and watching movies. And we also got 8-weeks worth of laundry done - a minor miracle! Not to mention about a dozen of other household tasks that I'd been putting off.

We had such a good weekend - I was so so so appreciative that they were able to come - I can't express how much it meant to me :)

Moving on to the Penultimate of it all...

Today, I reached a milestone I have only dreamed about: The Penultimate Treatment Day. The Last-But-One. Which means, inevitibly, only ONE LEFT!!!

I could hardly sleep last night. Even Vitamin-V didn't help. I heard the cuckoos at 12, I heard the cuckoos at 1, I heard the cuckoos at 4, I heard the cuckoos at 5. Eventually, I gave in and just layed in bed thinking about how much I've dreamed of this day.

Because although it is the penultimate treatment day, it was the last external beam radiation and the last chemotherapy. Let me say that again - the LAST external beam radiation and the LAST chemotherapy! YIPPEE!!!!!

Radiation was first. I arrived early (John couldn't be with me, but he dropped me off on time. Thank you, John!) and was hardly able to keep my glee contained. I was on such an adrenaline rush that I felt as if I might float down the hallway rather than walk. There was one other person waiting, and she opened the floodgates with one simple phrase. "How are you today?" That was IT - I couldn't contain my excitement. I told her how I was finally at the end, how I never thought this day would come, how I can't even remember what it was like to not have to go to radiation every day. And then I felt bad, because for her, it was just starting. I had seen her a few times, but only recently. Still, she was happy for me and I encouraged her that if I can get through it, anyone can!

When a member of my team came to take me back to the radiation room, she commented on how excited I looked. How could I not?!? I was on the verge of tears (happy tears) when all of a sudden, out of the radio floats my song - "Brown Eyed Girl" by Van Morrison. That was it: the tears, they did a-flow! But not too much, and my team understood. When I said goodbye to them, it wasn't very emotional because I will see them again Wednesday.

Then it was off for my weekly visit with Dr F. Every week, I have to fill out a sheet of questions: How do you feel this week? Do you have any pain? Do you have any treatment-related problems? Do you have any questions? My answer to the first question said it all - How do I feel? EXCITED!!!! There wasn't really anything medical for Dr F and I to discuss, so we just talked. He asked if there's anything I'd like to do now that I'm at the end, explaining that some people like to try new things. I told him I'd like to learn to surf, which led to a discussion about the VW show my club is planning for February (www.daytonawinterjam.com if you're interested). I asked him how long before I can get a tattoo (Dr F said 6 weeks, but Dr M's team advised that I should wait until after my 6-month check-up). I asked again about eating Brussels sprouts, which Dr F advised against as they are gas-producing and I am supposed to avoid those foods. I stated very matter-of-factly that I don't care what I have to endure in the aftermath, I will have my Brussels sprout! Even if it's just one :)

So right after, I headed upstairs for chemo. I checked in at Dr M's office. He wasn't there, but much of his team was and they wished me well and shared my enthusiasm for reaching this LAST CHEMO! One of them, G (she handles insurance) commented that I'm one of their favorite paitents. I said they must say that to everyone, but G assured me that is not true. I was, again, almost in tears as I headed up the elevator.

I couldn't believe it. I was signing into the chemo center for the LAST time. It was only to be my 7th treatment, but it felt like I'd been going forever. Nurse M came and got me and she also shared in my elation. I chose chair 12, the same chair I sat in for my very first chemo, 8 weeks ago. MT Jeanne came to sit with me, and we resumed our Scrabble game from a few weeks ago. (She won. Takes no pity on the infirmed!) We talked, we shared some sandwiches, I took about a gazillion trips to the bathroom. When it was all over, I hugged some of the nurses goodbye while fighting back tears, but I'll see them again. I'm having labs done next Monday, and I'll have my f#$%ing port flushed every month. So they'll see me, but it won't be the whole Platinum treatment.

And for those of you still hanging in and keeping score, notice how there's only ONE TREATMENT LEFT!!!!!! (Wednesday, 6am)

PS - if you're interested in the origin of the title of this post, read the footnote below.

* Monty Python: Michelangelo and the Pope, c. 1979

Pope: Evening, Michelangelo. I want to have a word with you about this painting of yours, "The Last Supper."
Michelangelo: Oh, yeah?
Pope: I'm not happy about it.
Michelangelo: Oh, dear. It took me hours.
Pope: Not happy at all.
Michelangelo: Is it the jello you don't like?
Pope: No.
Michelangelo: Ah, no, I know, they do have a bit of colour, don't they? Oh, I know, you don't like the kangaroo?
Pope: What kangaroo?
Michelangelo: No problem, I'll paint him out.
Pope: I never saw a kangaroo!
Michelangelo: Uuh...he's right in the back. I'll paint him out! No sweat, I'll make him into a disciple.
Pope: Aah.
Michelangelo: All right?
Pope: That's the problem.
Michelangelo: What is?
Pope: The disciples.
Michelangelo: Are they too Jewish? I made Judas the most Jewish.
Pope: No, it's just that there are twenty-eight of them.
Michelangelo: Oh, well, another one will never matter, I'll make the kangaroo into another one.
Pope: No, that's not the point.
Michelangelo: All right. Well, I'll lose the kangaroo. Be honest, I wasn't perfectly happy with it.
Pope: That's not the point. There are twenty-eight disciples!
Michelangelo: Too many?
Pope: Well, of course it's too many!
Michelangelo: Yeah, I know that, but I wanted to give the impression of a real last supper. You know, not just any old last supper. Not like a last meal or a final snack. But you know, I wanted to give the impression of a real mother of a blow-out, you know?
Pope: There were only twelve disciples at the last supper.
Michelangelo: Well, maybe some of the others ones came along afterw...
Pope: There were only twelve altogether.
Michelangelo: Well, maybe some of their friends came by, you know?
Pope: Look! There were just twelve disciples and our Lord at the last supper. The Bible clearly says so.
Michelangelo: No friends?
Pope: No friends.
Michelangelo: Waiters?
Pope: No.
Michelangelo: Cabaret?
Pope: No!
Michelangelo: You see, I like them, they help to flesh out the scene, I could lose a few, you know I could...
Pope: Look! There were only twelve disciples at...
Michelangelo: I've got it! I've got it! We'll call it "The Last But One Supper"!
Pope: What?
Michelangelo: Well there must have been one, if there was a last supper there must have been a one before that, so this, is the "Penultimate Supper"!

05 November 2008

hitting the wall

This week, I have hit the wall. All the optimism and positivity is fast hemorrhaging and in its place is left a black hole of desperation. Desperation to be done with all of this.

This began over the weekend, when on Saturday my fever climbed and climbed until it reached the 100.5° threshold that means a call to the doctor. The on-call MD said he'd let the emergency room know I was on my way. I got there around 7 pm and was promptly handed a mask so I wouldn't inhale any germs. I was given IV antibiotics and fluids, and had lots of blood taken and tested. After about three and a half hours, I was given a prescription for Levaquin, an antibiotic, and let go. I must say, Dr W and Nurse S were very kind. But, as always, I don't know how I would have gotten through it without John. Between getting stuck in the crook of my elbow and having the humiliation of my first bedpan use, he encouraged me to hang in there and held my hand and even managed to make me laugh. He's good like that :)

Sounds easy, no? 3 1/2 hours in the ER, a script, and a release. But I assure you, it wasn't easy. Levaquin, a nice "broad-spectrum" antibiotic, and one of the few I'm not allergic to, rips apart my insides. There is no amount of Immodium that can offer any relief.

And along with the unending diarrhea, is nausea. Nausea like I can't explain. I know in my head that if I could just throw up, I might feel better. But I am not a puker, and so I'm left with being sick to my stomach for hours on end. I have tried three different meds for this, but nothing seems to be able to offer relief.

How I spent my weekend

I spent Sunday and Monday in bed. Tuesday, I woke up feeling a bit better. I went for blood work, and even made it into work for a few hours. But as soon as I took my Levaquin, that was all over. Today, I woke up feeling bad and have not improved. I didn't even attempt going in to work. I got ready, got dressed in my new kitty-cat shirt (thanks, Julie!), and headed off to radiation. Halfway there, the nausea hit.

I had a long chat with Dr F, who seems to really listen to me and tries to answer my questions thoughtfully. He said that although it is too early to tell if all this radiation is helping (plus the radiation causes inflammation and swelling), he has seen some improvement. And both he and Dr M are confident that the treatment is working. He gave me a prescription for Zofran, a new anti-nausea med that started to work until I took my Levaquin. Since then, I've been in bed.

Looking cute despite the nausea in my kitty cat shirt

On top of all this, I'm scheduled for my last chemo tomorrow. But my counts this week are lower than they were last week (1.7 white cells, and 9.4 hemoglobin), so logically that leads me to believe that chemo will hit me harder this time than last time. Which means that in addition to feeling physically crappy, I also feel emotionally and mentally crappy, and have spent an inordinate amount of time crying.

The thing that bothers me most is that it seems like Dr M isn't hearing me. Dr F suggested last week that I might not need this round of chemo. And after ending up in the ER, I was especially hoping for that to be true. I spoke with Dr M's nurses, and they spoke to him, and then he told them his answer, and then they told me. "Yes, she still needs it." But I haven't talked to him face-to-face since my laparoscopy, and it's difficult to feel that a doctor is on your side when you only hear from him via other people. It's hard to see if he's listening, or if he's just phoning it in. I am feeling like a number. And not a prime number, at that.

And once again, I have heard from one of his nurses. Nurse J called me and we've had a long talk about things. She suggested, and I agreed, that I will go in tomorrow as scheduled, But instead of chemo, I will get some fluids and some anti-nausea meds. And they'll do some more labs. Then, depending on how I feel and what the blood work shows, if I'm going to have this last chemo, it will be on Monday. Monday is also my last day to be on Levaquin, so if I have to have chemo that day, at least they will give me anti-nausea meds at the same time.

And on Wednesday, I will have my last Brachytherapy.

And then I will be done. My treatments will finally be over, and I can begin my journey back to being myself.

I hope I haven't forgotten who that is!