Thank you for your patience, faithful readers - I know this post is long overdue. I apologize to any of you who have been waiting by your computers like some lovestruck schoolgirl waiting for the phone to ring on a Saturday night. Who am I kidding? As if you've been sitting there this whole time...
really, i don't like roller coasters
Up. Down. Up. Down. This could describe my blood counts just as equally as it could describe my mood.
When I last reported, my counts were barely creeping up. In fact, way back on November 20, I expounded on the definition and cause of the nadir I thought I was living through. The week after that, I felt great and had loads of energy. I was sure my counts were up; if not in the normal range, then darn close to it. It had been 9 days since my last labs, and I had been knocking wood till my knuckles were raw. I had blood drawn in the morning, and then it was about an hour wait for results. When I got them, it was all I could do to not cry.
Some of my counts had gone up. My platelets were almost normal. My hemoglobin was still creeping up. But my white blood cell count had gone down a little. And more drastically, the all important ANC (Absolute Neutrophil Count) had dropped almost in half. Neutrophils are a type of white blood cell that fights infection, and I had lost almost half of mine in just over a week. I was devastated. I had been hoping to find out that I could finally go to the grocery store without a mask on, or go back to work without having to isolate myself in my office, or eat an uncooked vegetable; but instead, I felt as if I was moving in reverse. THIS was my nadir.
The next day, I saw Dr M. He said that I seemed to be on track to what he expected and that even though it wasn't exactly normal for someone to hit their nadir so many weeks after treatment ended, it wasn't giving him any cause for concern. He even said that I could go to work if I felt up to it, but that I should still be careful to say away from sick people and wash my hands constantly and be extra careful. The next Monday, I was back at work.
Then I started to get fevers. And if you remember, fevers = emergency room = sad sad Linda. But this time was different. Since my treatment was over, I didn't have to rush to the emergency room when I hit 100.5°. Nurse J advised me to take 'something' and just keep an eye on things, which I did. She also called in a prescription for an antibiotic (thankfully NOT Levaquin). My fever would come back in the afternoons, but would go away before bedtime and be gone until the next afternoon. Nobody seemed very concerned about this. Since I wasn't in treatment any longer, the big danger was over.
I saw Dr F on Wednesday. He commented that I looked how he remembered me looking when I first became his patient. This was a good indicator to him that I was doing better, regardless of what the blood tests were saying. He also explained that most of the neutrophils are normally made in the bone marrow of the pelvic bones. But since mine had been radiated daily for almost 9 weeks, my pelvic bones weren't regenerating cells. Eventually, my body would catch on and switch neutrophil production to the long bones of my arms and legs. It would just take time.
The time came on Thursday, December 11. My counts had not just doubled - they more than tripled! This put me in the normal range!!! YIPPEE!!!!!!!!!! I was finally allowed to be around people! I was finally able to go to the movies! I was finally going to be able to eat salad! And cheese!
it's good to be me again
But old habits are hard to break. After steeling myself for having to be isolated and germ-free for the holidays, I didn't know what to think of my emancipation. It was a little confusing: when you've been worried for months about everything you touch and everyone you breathe around and what types of foods you eat, it's difficult to just let go of that. I'm still constantly washing my hands, and I'm still taking my temperature, and I'm still nervous about what I eat.
I went back to work the following Monday; and for the first time since August, worked the entire week! It tired me out, but it was a great feeling to get up every day and go to work. Mind you, I was late every day. And I can't promise you that I stayed focused the whole time. But I was there, and I got to be around people, and that felt great.
On Wednesday, I attended our office Christmas party and ate my first nibble of raw vegetables: my famous Veggie Squares! They were delicious, even though I found them a little saltier than I remembered. It was wonderful to be around all my co-workers and not be worried about standing too close to anyone :)
In the week that followed, I expanded my food intake even more: tuna salad with lettuce and tomato, an Olive Garden salad, sub sandwiches, french fries, chips and salsa.
The only things I'm really still staying away from are sodas, heavy cheeses, and spicy foods. But those will come in time.
a very merry christmas
For Christmas John and I got a really big surprise: my family! Very unexpectedly, I got a call on December 23 from Julie that her family and my mom were headed to my house for Christmas! It was exactly what I wanted :)
They arrived just after dark on Christmas Eve. They were instantly nicknamed Catherine and Eddie for the Griswold cousins from Christmas Vacation, since they were parking their RV on our front lawn. They didn't empty the shitter, but they did back over a neighbor's mailbox. Oops!
We had a nice Christmas Eve. Loads of finger foods: veggie squares, buffalo chicken dip, bruschetta dip, chicken wings. We opened presents with the family, and had a lot of laughs.
Christmas morning, John and I woke up early and opened presents with the kittens. I'm glad to say that I am using one of my presents to write this post: John gave me a new laptop! Wah-hoo! I'm no longer using an obsolete operating system on an eight-year old machine. Fabulosity! If you would like to Skype me, you can now! Just look for bonezrodriguez.
After opening our presents together, John and I invited the Griswolds to come on in. We ate, we played games, some of us napped, we ate some more. After dinner, we watched Christmas Vacation and played Christmas Vacation Bingo (my John won). At around 9 pm, there was a knock on the door. And who do you think it was? The rest of my family! Diane and her three sons had driven up so they'd get there before Christmas was over! I really did have my whole family there for Christmas! I was overwhelmed and overjoyed!
The next day, John had to go back to work. The Newtons headed off to Georgia. My mom and I went out to see MT Jeanne (the Danforths had spent the night there). We played games and talked and laughed for most of the day. The Danforths left around 4:30 and took my mom home with them. And I headed home right after.
So even though it was just for a short while, I had all my family with me for the holiday, and it was wonderful. It was great to see and hug them all!
Now, I'm recovering from all that food and all that visiting. Getting caught up on the laundry. Playing on my new laptop. Resting. Recuperating. Relaxing.
And if you don't hear from me again before then, I wish you all a most happy new year!
My exciting journey through the magical world of oncology...
On 10 July 2008, I was diagnosed with cervical cancer. Two years later, I'm facing it again.
In this blog, I hope to provide information and insight to my experience.
27 December 2008
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!
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!
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!
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"!
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! |
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.
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.
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!
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 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 |
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!
31 October 2008
happy halloween!
No, this isn't my Halloween costume! It's me in my new Tinkerbell pyjamas. Thanks Robbin!
But since it is Halloween, wanna hear something scary? 4 surgeries, 25 radiations, 6 chemotherapies, 4 Brachytherapies, low blood counts, food restrictions, diarrhea, nausea, doctors, nurses, techs, oh my. Frightening, isn't it?
But that's been my life for the past little while. That is what I have been through, mostly in the past 7 weeks. Makes me cringe just thinking about it...
Today I reached a milestone - the end of my 25-sessions of external beam radiation. They gave me a certificate of completion and everything. Yippee! Except don't jump up and down quite yet - I'll start the "bonus round" of radiation on Tuesday - somewhere between 3 and 5 very targeted treatments. But Dr F assures me there will be no more after that.
And I may have had my last chemo yesterday. Technically, there is another one scheduled for next Thursday, but Tuesday I will have labs done and it will depend on how low my blood counts get. Things are pretty low right now, but they are still waiting for those labs before they make the call. Part of my wants to get that one last treatment, but a much bigger part of me REALLY wants it to be over with!
It isn't that chemo is bad, it's just that the weekends after chemo just so incredibly suck. I know it sounds dreamy to stay in bed for three days and watch TV, but it really isn't. But like I said, the treatments themselves still aren't that bad. Two weeks ago, MT Jeanne came with me and I finally beat her at that game of Scrabble! Did I win? Or did she let me win? She doesn't generally do that, but then again, I am sick and she might've felt sorry for me. I'm sure she'll say she didn't throw the game, but that means I beat her fair and square - just the way I like it!
But what's REALLY over (and I do mean REALLY) are those damn Huber needles that I've had to endure for multiple days sticking in my chest. I hate them, hate them, hate them. The first time I had one, the nurse covered it with gauze so I couldn't see it. But the last few times, it has just been a clear dressing. Which is really gross to me. Mirrors have not been my friends. But if you'd like to see, click here!
Brachytherapy this week was fairly uneventful. Things went easier because I was already wired up, so I didn't have to get stuck by Nurse J. (The week before, she had to stick me twice and it left a yucky bruise.) Oliver stopped by to wish me luck. I got my mega dose of Versed and got really really loopy. I'm hoping I won't have to go to rehab to get off the stuff! LOL
Dr F inserted the "tandem and ovoid" lollipops in a different configuration so there was no need for me to be tilted at an odd angle, and no need to clamp off my cath bag! That was awesome! Yes, it hurt to unpack everything, that is to be expected. However, it went much quicker than last time and I was home by 2pm. I get a week break from Brachy (would that be a week Brachy-break?) - my last one is scheduled for November 12. My last treatment.
Let me repeat that: My last treatment will be November 12. That means that 12 days from today, I will get my last treatment.
Yah-friggin-hoooooooo!!!!!!!!!!!!!!!!!
After that, all I have to do is feel better in time for brussels sprouts on Thanksgiving! I don't want to jinx anything, but I'm starting to feel a little excited about this.
I'm going to take a nap now so that I'll have some energy to hand out Halloween candy to all the little hoodlums tonight. Candy that I can't eat. Seems a little cruel, don't you think?
For those keeping score:
Thanks for all your calls and emails - I really appreciate you sticking with me through this whole ordeal :)
22 October 2008
a week without chemo is like a week without sunshine
And with a kitty as cute and lovable as Sunshine, that would be tragic!
But I am getting ahead of myself once again.
Today was Brachytherapy #3. It went much better than the last one - no need for Dr F to send flowers this time :)
I don't know if it is a good thing or a bad thing that hospital employees are starting to recognize me: the woman at check-in, several of the nurses, the anesthesiologist. One that definitely did not recognize me was the Ladies Auxiliary worker that brought me to pre-op. I didn't get her name - she was not interested in nice conversation. She brought two of us in at the same time, and put the other patient at one end of the changing rooms and me at the far end. She told me to put on a gown and put my clothes "in this locker." Problem was, it was locker number 19. I always use locker number 13. And, as you might already know, I am very superstitious. So when the Auxiliary Lady came back in, I asked if I could switch to locker 13, to which she snapped "no, it's at THAT end, you are at THIS end." I explained that I'm superstitious and I didn't want that number, but she didn't care. She had already attached the key to 19 to my clipboard and was bound and determined that 19 is what I would use. But I was more determined, and we compromised with 21. Just to add insult to injury, she only gave me one warm blanket instead of two. Sour puss!
I had Nurse J again. She was very nice, and genuinely asked how I'm holding up. We are both fond of chit-chat, and we talked about MT Bee going to Haiti, Julie's weekend visit, Mom's trip to VA, and Nurse J's new puppy and recent vacation in NC. But not everything with Nurse J went smoothly. She had to access my port twice! The first time, she could get no blood return and could not flush it, no matter how hard I tried to relax and not panic. So she took that needle out, and tried again. This time was perfect and got an immediate blood return. I wonder if the need for two sticks was that I didn't have locker 13...
I also got a visit from Oliver, the tech that I am (surprise!) superstitious about seeing before going under. Last week, when I was on the 1st floor instead of the 2nd (my Brachytherapies are always on the 2nd floor), I panicked when I realized that Oliver wouldn't be there to stop by my bed and wish me well. Panicked so much that the tech for that floor went to the 2nd floor to see if Oliver would come down! Which he did. This time, he was there, just as usual.
Soon, Dr L (the anesthesiologist) came by and approved not 2, not 4, but 7 mg of Versed! What a nice man :) He also gave some other stuff that made me feel nice and sleepy. Before I knew it, I was being wheeled down to the OR. Outside the door stood Dr F and Oliver. I said blah-ly "Hi Dr F" and enthusiastically "Hi Oliver!" Dr F commented that O got a warmer reception than he did, so I had to apologize for that.
When I awoke, it was around 8:30 or 9:00, and I was having the usual cath pain. I got some Vistaril and Demerol and Morphine. Oliver even stopped by there a few times and commented on the furrow in my brow - how it got less and less pronounced as the drugs were added more and more :)
Soon, T was there to wheel me to the ROCk where my treatment, and more importantly to me, my mp3 player awaited. But first, the CT-scan. This was done at a 5° angle, which is much easier without all that apparatus up my [insert euphemism here]. This time, they had to tilt my stretcher at the same angle and then slide me over. But first, they fixed it so my cath bag would be closed off and I wouldn't be able to pee during the scan. Dr F felt that having a full bladder makes an additional difference to the position of my small bowel. So that was fun.
Then it was off to the napping room (I was laying flat again). I had planned ahead this week, and had with me a fully charged mp3 player. It made quite the difference! I woke up less irate and was able to stay calm and nappy the whole time. I didn't feel like the blood pressure machine was ticking off hours. I don't even know how long I was there. Which was exactly the idea :)
Then came the treatment, which also had to be at a 5° tilt. With a clipped off cath bag. This was interesting! I can't even describe to you what they had to do to get me into that position in the treatment room! They had a new Iridium source (less degraded) so that the treatment itself only took 5 minutes and 12 seconds! That was really nice, considering I felt like any sudden move and I'd find a way to pee around the cath and all over myself (I didn't). They were surprised at how much pee I had once they unclipped it! TMI?
They also offered to show me a picture that Dr M took of my insides during the laparoscopy - don't worry, I declined. I will NOT be posting that one on this blog!
So that was really it! Dr F unpacked everything right away in the treatment room, and although it is totally painful to get unpacked, that pain doesn't last and by the time I got back to the napping room to get my IV disconnected, it didn't hurt anymore.
John stopped by Dunkin' Donuts on the way home for my ritualistic plain bagel, toasted, cream cheese on the side. And now I'm home. Tired, needing a nap, but determined to finish this blog.
But where does Sunshine fit into all of this? I'll tell you. It seems Dr M and Dr F are conspiring against me. They have decided that I will resume daily radiation tomorrow instead of Monday, with chemo on Friday. So now, the break I thought I would have is no longer. C'est la vie. These things happen.
John has to work, so MT Jeanne will accompany me and we'll finally get to finish that game of Scrabble®!
Thank you for all your words of encouragement on my recent blue day! You really are a great team of supporters!
For those keeping score...
20 October 2008
cry and the world cries with you...
Ever have one of those days? When the slightest thing might make you cry? When you can't seem to get rid of the headache that doesn't seem quite bad enough for meds? When you're just hungry enough to want food, but just icky feeling enough that no food sounds appealing?
Well, that's my day. Welcome to Monday, October 20.
I spent a nice weekend with my sister Julie. She was a good sport - didn't mind reading while I slept off the anesthesia leftover from Wednesday's surgery. We did have a nice time buying guppies, which I have repeatedly dreamed about since.
As you remember, the result of my surgery was that it was pointless - there was nothing adhering my small bowel to my uterus. In fact, my small bowel was free to move about whenever and wherever it wanted. So today's plan was to have a CT-scan tilted at a 5° angle toward my head to see if my bowel drifted away from my uterus. And lo and behold, it did!
So I'll be proceeding as planned with Wednesday's Brachytherapy, just with a little tilt to make things work a little easier on my insides.
This week, I am on a break from my other treatments: I'll start back with daily radiation and weekly chemo on Monday. So with that, and including the extra radiations that Dr F would like to tack on the end, I should be finishing two weeks later than I had originally planned - by November 14. That is, as long as nothing else gets in the way.
This should make me happy. This should leave me feeling hopeful. But this is just one of those days that I can't shake the doldrums. I can't help it, today I just feel down.
But tomorrow will be a new day and I'll be back to my old chipper self again. Back to the pithy, witty hillarity that you've all grown used to over the past months.
Back to me :-)
Well, that's my day. Welcome to Monday, October 20.
I spent a nice weekend with my sister Julie. She was a good sport - didn't mind reading while I slept off the anesthesia leftover from Wednesday's surgery. We did have a nice time buying guppies, which I have repeatedly dreamed about since.
As you remember, the result of my surgery was that it was pointless - there was nothing adhering my small bowel to my uterus. In fact, my small bowel was free to move about whenever and wherever it wanted. So today's plan was to have a CT-scan tilted at a 5° angle toward my head to see if my bowel drifted away from my uterus. And lo and behold, it did!
So I'll be proceeding as planned with Wednesday's Brachytherapy, just with a little tilt to make things work a little easier on my insides.
This week, I am on a break from my other treatments: I'll start back with daily radiation and weekly chemo on Monday. So with that, and including the extra radiations that Dr F would like to tack on the end, I should be finishing two weeks later than I had originally planned - by November 14. That is, as long as nothing else gets in the way.
This should make me happy. This should leave me feeling hopeful. But this is just one of those days that I can't shake the doldrums. I can't help it, today I just feel down.
But tomorrow will be a new day and I'll be back to my old chipper self again. Back to the pithy, witty hillarity that you've all grown used to over the past months.
Back to me :-)
17 October 2008
no surgery is good surgery
Well, the best news is I'm home.
And the good news is that the sattelite collar is off my two headed dog! (see here)
And the other good news is that everything looks fabulous in my abdomen.
And even more good news is that Dr M went in laparoscopically through old incision sites so I won't have any new scars. And I don't have stitches, just superglue covered in steri-strips. (click for pic)
But the not-so-good news is that it turned out all for naught. There was nothing adhering my small bowel to my uterus. So no surgery was actually required. =C
And the bad news was that even though I had my port accessed and all ready to go, Dr M likes to have a back-up so I had to get an IV anyway. Ick!
I have an appointment with Dr F on Monday. He will do another CT-scan and see what that shows, and discuss our next step. I hope it doesn't involve getting Brachytherapy while standing on my head!
I'm not having too much pain. My abdomen is sore, but not too sore. The gas pains have not yet hit my shoulder, and when they do I hope they won't be as bad as last time since this surgery lasted about 1/4 of the time of that one. I had some nausea yesterday, but (knock wood) none so far today.
So overall, things are okay. I'm taking it easy today, looking forward to a weekend visit from my sister Julie, hoping to eat some solid food today (ya-hoo!).
Thank you all for the messages of support and love!
And the good news is that the sattelite collar is off my two headed dog! (see here)
And the other good news is that everything looks fabulous in my abdomen.
And even more good news is that Dr M went in laparoscopically through old incision sites so I won't have any new scars. And I don't have stitches, just superglue covered in steri-strips. (click for pic)
But the not-so-good news is that it turned out all for naught. There was nothing adhering my small bowel to my uterus. So no surgery was actually required. =C
And the bad news was that even though I had my port accessed and all ready to go, Dr M likes to have a back-up so I had to get an IV anyway. Ick!
I have an appointment with Dr F on Monday. He will do another CT-scan and see what that shows, and discuss our next step. I hope it doesn't involve getting Brachytherapy while standing on my head!
I'm not having too much pain. My abdomen is sore, but not too sore. The gas pains have not yet hit my shoulder, and when they do I hope they won't be as bad as last time since this surgery lasted about 1/4 of the time of that one. I had some nausea yesterday, but (knock wood) none so far today.
So overall, things are okay. I'm taking it easy today, looking forward to a weekend visit from my sister Julie, hoping to eat some solid food today (ya-hoo!).
Thank you all for the messages of support and love!
15 October 2008
frankenlinda goes back on the slab
Here's an anatomy lesson:
People have lots of intestines. And those intestines are not stuck in one place in the body - most of them float around in abdominal space, free to be where they want. I, apparently, am not most people. Parts of my instestines are attached. To my uterus.
Now, normally this wouldn't be a problem. I could go my whole life with my small bowel attached to my uterus and never know the difference. But since I also have cervical cancer, and thus my uterus needs to be bombarded with high doses of radiation, this creates for me a problem. This creates for me the need for more surgery.
Don't I look happy about this?
More surgery means that the timeline that I had grown so emotionally attached to is no longer viable. And just to put an explanation point on that, Dr F has planned five more external radiations, only these will be to a much smaller area. So basically, I was all set to being finished by October 29, but I was the only one! Now I'm just hoping to be finished by Thanksgiving.
(expletive) (expletive) (expletive)
Tomorrow at 9:30 am, I will undergo laparascopy (oh goodie!) to see if whatever is attaching my bowel to my uterus can be snipped, and a barrier placed between them so it won't reattach.
Which means today, I'm prepping. This time, it's Fleet® phospho-soda, an anti-emetic, and two antibiotics. I have a strict dosing schedule to follow, and I've just gagged my way through dose 2 of the diarrhea-inducing soda plus the nausea-inducing antibiotics.
Oh, on top of all that, I found out this morning that I have a UTI, which means even more antibiotics. Oh joy!
John has been a real trooper - I have lost count of the times I've needed to lean on him. He always knows just the right thing to say, and the right way to say it. I really couldn't get through this without his support. I don't know if I'll ever be able to thank him enough...
the two-headed dog loses its tail, but gains a satellite collar (or two)
One good thing that has happened is that I pulled my stitch out! To be exact, I pulled two stitches out. One was about 1/2 inch long and came out strand by strand. The other was longer, all coiled up, and was a bit more difficult to get out. It's ok for me to talk about it now, but at the time, I was on the verge of losing my cookies. It was just so gross!
To add to the gross-ness, on Tuesday I had a Huber needle attached so that there would be an easier time in pre-op tomorrow. It doesn't hurt, but not a second goes by that I'm not aware of it. (click for a pic)
doctors are human too
And finally, as a follow-up to the last post, Dr F sent me a nice flower arrangement with a note of encouragement last Friday.
It came on a day that I really needed a pick-me-up =)
Like today. I could really use a pick-me-up. Or maybe a pick-me-upper?!? But, alas, I'll have to settle for an anti-emetic. C'est la vie!
Thanks for all your words of inspiration and motivation - it really does mean alot to me to hear from you and to know you're thinking of me when I'm facing these challenges. What would we do without the internet???
People have lots of intestines. And those intestines are not stuck in one place in the body - most of them float around in abdominal space, free to be where they want. I, apparently, am not most people. Parts of my instestines are attached. To my uterus.
Now, normally this wouldn't be a problem. I could go my whole life with my small bowel attached to my uterus and never know the difference. But since I also have cervical cancer, and thus my uterus needs to be bombarded with high doses of radiation, this creates for me a problem. This creates for me the need for more surgery.
Don't I look happy about this?
More surgery means that the timeline that I had grown so emotionally attached to is no longer viable. And just to put an explanation point on that, Dr F has planned five more external radiations, only these will be to a much smaller area. So basically, I was all set to being finished by October 29, but I was the only one! Now I'm just hoping to be finished by Thanksgiving.
(expletive) (expletive) (expletive)
Tomorrow at 9:30 am, I will undergo laparascopy (oh goodie!) to see if whatever is attaching my bowel to my uterus can be snipped, and a barrier placed between them so it won't reattach.
Which means today, I'm prepping. This time, it's Fleet® phospho-soda, an anti-emetic, and two antibiotics. I have a strict dosing schedule to follow, and I've just gagged my way through dose 2 of the diarrhea-inducing soda plus the nausea-inducing antibiotics.
Oh, on top of all that, I found out this morning that I have a UTI, which means even more antibiotics. Oh joy!
John has been a real trooper - I have lost count of the times I've needed to lean on him. He always knows just the right thing to say, and the right way to say it. I really couldn't get through this without his support. I don't know if I'll ever be able to thank him enough...
the two-headed dog loses its tail, but gains a satellite collar (or two)
One good thing that has happened is that I pulled my stitch out! To be exact, I pulled two stitches out. One was about 1/2 inch long and came out strand by strand. The other was longer, all coiled up, and was a bit more difficult to get out. It's ok for me to talk about it now, but at the time, I was on the verge of losing my cookies. It was just so gross!
To add to the gross-ness, on Tuesday I had a Huber needle attached so that there would be an easier time in pre-op tomorrow. It doesn't hurt, but not a second goes by that I'm not aware of it. (click for a pic)
doctors are human too
And finally, as a follow-up to the last post, Dr F sent me a nice flower arrangement with a note of encouragement last Friday.
It came on a day that I really needed a pick-me-up =)
Like today. I could really use a pick-me-up. Or maybe a pick-me-upper?!? But, alas, I'll have to settle for an anti-emetic. C'est la vie!
Thanks for all your words of inspiration and motivation - it really does mean alot to me to hear from you and to know you're thinking of me when I'm facing these challenges. What would we do without the internet???
10 October 2008
three months
Three months ago today, at about 8:20 am, Dr B looked me in the eye and said "you have cervical cancer." Only three months. And at the same time... wow, three months. So much has happened. Surgeries. Radiation. Chemotherapy. Oncologists. Scars. Sickness. Nausea. Medications. Side Effects. Needle Sticks x a kajillion. Tears. Laughter.
But I'm still here, still fighting, still unwilling to give myself over to the dark side. With John by my side, I have faced each challenge head on (or sometimes, head turned) and gotten thru. Only to be met on the other side by yet another challenge, bien sur. But I will continue to fight, and eventually I will win!
Here's the latest:
you brachy it, you buy it
Brachytherapy this week was, shall we say, not good. I had my labwork done on Tuesday so I could forgo all the torture of trying to get it done in pre-op. My thinking was that this would speed things up. I was in the OR on time (7:30) and was waking up in post-op around 9:00. The catheter hurt like hell, but I knew to ask for drugs right away. Nurse W was off, but Nurse H was awesome and did not leave a bruise like the one Nurse W left with the IM Vistaril (click for pics). I was given the same cocktail as last time (Morphine/Demerol/Vistaril) and again it worked like a charm. God bless drugs!!!
Nurse H made a call to get Orderly T to come pick me up and bring me over to the ROCk to get things going. But T didn't show up until over 30 minutes later. I got there around 11:00, and was taken right for the CT-scan. That went well, and it was time for the napping-room. Dr F came in to check in on me, and after seeing the CT-scan, came back in to say that my anatomy hadn't changed too much. Last time, the scan showed that my small bowel was sitting on my uterus, and this week the scan was not showing much difference. But we'll get to that in a minute. Dr F left me, and I napped. The drug-slumber wore off around noon, just in time to hear everyone at the nurses' station talking about lunch. I wanted to get on with it, but apparently everyone else was hungry. Hearing them talking about food got my stomach grumbling, and the drugs left me on the irate side of the bed.
I also overheard Dr F interacting with some other patients, and my opinion of him was cemented: this is a doctor that actually cares about his patients, and gives each one the extra care they long for. I am lucky to have him on my team! But still, there I sat, getting more pissed, wanting more and more to get the tubes out of my pooter and get my ass home to bed. All the time I'm lying there, an automatic blood-pressure cuff is attached to me. I haven't got access to a clock, but I'm guessing it goes off every 15 or 20 minutes. This is the high-tech equivalent of scratching off days like this in myprison cell nap room. Each time, my blood pressure slightly rises with my ire. Finally, they came to get me at 1:30.
Last time, the treatment took 12 minutes, and they played an awful Elton John cd. This time, because of the degradation of the Iridium sample, the treatment would take 14 minutes. But I provided my own cd: Mozart; the Jupiter Symphony and Overtures of The Magic Flute, The Marriage of Figaro, and The Abduction from the Seraglio. Much much more relaxing. The treatment itself was uneventful. Before I knew it, I was headed back to the nap room where all my vaginal accoutrements would be removed, and I could finally go home. But then, it happened...
"Dr F, Dr O on line 2" broadcast on the pager. I had heard Dr F talking earlier to a lung cancer patient with a bad cough about her going to see Dr O and them needing to discuss her case. I groaned. Please let this be a short call. Nurse B came into the nap room and removed my catheter (OUCH) and the many miles of wadding that was packed into my vag (OUCH x 1023). She left me to cry by myself a bit, and then it happened... "Dr F to the Sim Room" - he was being paged again. Crap! I had overheard that a new patient was having her first radiation - the sim - and she had seemed nervous. If Dr F was being paged, it meant there was a problem. Please let this be a quick-fix. But no. It was not to be. Nurse B came in an took out my IV, but that was all she could do.
Dr F needed to remove the tubes, but he was giving other patients the kind of care that I so appreciate him giving me. There I was, lying alone in a room in pain, knowing that John was in the waiting room, having been told it would be about 20 minutes over 30 minutes ago. I waited there for over an hour, and by the time Dr F came in, I was sobbing. I couldn't look at him. I felt forgotten, and by that time I was irate. I let him have it.
"What can I do?" he asked with genuine concern.
"Next time, don't forget me" I snapped back.
"I understand how you feel" he sympathized.
"Go home and stuff three lollipops up your rectum and leave them there for the weekend, and THEN you'll know how I feel" I retorted.
I was not at my best. Dr F was doing his best to apologize, and I was angry and bitter and hurt and insulted. And it showed. But he rose above it and went to talk to John. He apologized for the long wait. John told him that I speak very highly of him, and his response was "Well, she might not after today." But you are wrong, Dr F. I do still think highly of you. Yes, I eavesdropped; but because of the what I overheard, I know you were doing for others what you do for me. And that is to do whatever you need to in order to give the best care. I just happened to need 5 minutes of your time when you didn't really have an easy out. I trust this won't happen again.
But Dr F also had some troubling news. My small bowel is still too close to my uterus, and therefor too close to the high-dose radiation. The exposure will cause damage, but the treatment is too important in killing my cancer. I had a CT-scan this morning while laying on my stomach to see if that makes a difference. If it does, I will get treatments in that position (but while resting, I'll still be able to lay on my back). If that doesn't make a difference, it will mean more surgery to move the bowel. And - lucky me - they can do it laparoscopically!!! If anyone doesn't get that sarcasm, revisit this post. So everyone, please knock me some wood - you know I am! I should find out on Tuesday.
my two-headed dog might be staying a while
Yesterday was chemo. I was so calm in advance that I didn't even need a Vitamin V. But that's a double-edge sword: good that I'm calm about chemo, but is chemo something I really wanted to ever get so used to that I'd be calm about it? While Nurse M was hooking up my port, we had a little chat. First, she explained that even though I'm only scheduled for two (!) more chemo sessions, they won't remove my port for probably six months. They do this just in case the follow up requires more chemo. Makes sense, but I was really hoping to be rid of this two-headed dog.
Here is an artist's rendering of me during treatment (thanks, Jer):
Next, we talked about that being the third day in a row that my port got stuck. Nurse M was concerned because being stuck so many days in a row could lead to lots of scarring since the needle is going over and over into the same spot. She suggested that I get a Huber Needle (click for pic). This is a shorter needle that will be inserted on Tuesday when I get my blood drawn, and covered with a large clear dressing. A small capped-off IV tube will be attached. Then on Wednesday when I go for Brachytherapy, the IV will just need to be hooked up instead of my port being accessed. And then Thursday for chemo, they'll use that same hook-up. When chemo is over, they'll take it out. Because right now, my skin is getting abused (click for pic). This is a good thing, because it will make it easier for me and mean less scarring. But it's kinda freaky to me that I'll have this needle in my chest from Tuesday morning to Thursday afternoon. But I'll probably do it anyway.
this is so funny, it's leaving me in stitches
And now, I not only have a stitch sticking out, I have two stitches! I think it is actually one stitch, but now both ends have worked their way out. It's really freaking hard for me not to pick at it (wanna revisit my picking fetish? revisit this post...). Plus, it's freakish. (click for pic)
So that's about it for today. For those of you keeping score, I'm over halfway through this battle!!!
Thanks everyone for the supportive emails and calls and cards and comments! It means the world to me to have you hanging in there with me during this ordeal =)
But I'm still here, still fighting, still unwilling to give myself over to the dark side. With John by my side, I have faced each challenge head on (or sometimes, head turned) and gotten thru. Only to be met on the other side by yet another challenge, bien sur. But I will continue to fight, and eventually I will win!
Here's the latest:
you brachy it, you buy it
Brachytherapy this week was, shall we say, not good. I had my labwork done on Tuesday so I could forgo all the torture of trying to get it done in pre-op. My thinking was that this would speed things up. I was in the OR on time (7:30) and was waking up in post-op around 9:00. The catheter hurt like hell, but I knew to ask for drugs right away. Nurse W was off, but Nurse H was awesome and did not leave a bruise like the one Nurse W left with the IM Vistaril (click for pics). I was given the same cocktail as last time (Morphine/Demerol/Vistaril) and again it worked like a charm. God bless drugs!!!
Nurse H made a call to get Orderly T to come pick me up and bring me over to the ROCk to get things going. But T didn't show up until over 30 minutes later. I got there around 11:00, and was taken right for the CT-scan. That went well, and it was time for the napping-room. Dr F came in to check in on me, and after seeing the CT-scan, came back in to say that my anatomy hadn't changed too much. Last time, the scan showed that my small bowel was sitting on my uterus, and this week the scan was not showing much difference. But we'll get to that in a minute. Dr F left me, and I napped. The drug-slumber wore off around noon, just in time to hear everyone at the nurses' station talking about lunch. I wanted to get on with it, but apparently everyone else was hungry. Hearing them talking about food got my stomach grumbling, and the drugs left me on the irate side of the bed.
I also overheard Dr F interacting with some other patients, and my opinion of him was cemented: this is a doctor that actually cares about his patients, and gives each one the extra care they long for. I am lucky to have him on my team! But still, there I sat, getting more pissed, wanting more and more to get the tubes out of my pooter and get my ass home to bed. All the time I'm lying there, an automatic blood-pressure cuff is attached to me. I haven't got access to a clock, but I'm guessing it goes off every 15 or 20 minutes. This is the high-tech equivalent of scratching off days like this in my
Last time, the treatment took 12 minutes, and they played an awful Elton John cd. This time, because of the degradation of the Iridium sample, the treatment would take 14 minutes. But I provided my own cd: Mozart; the Jupiter Symphony and Overtures of The Magic Flute, The Marriage of Figaro, and The Abduction from the Seraglio. Much much more relaxing. The treatment itself was uneventful. Before I knew it, I was headed back to the nap room where all my vaginal accoutrements would be removed, and I could finally go home. But then, it happened...
"Dr F, Dr O on line 2" broadcast on the pager. I had heard Dr F talking earlier to a lung cancer patient with a bad cough about her going to see Dr O and them needing to discuss her case. I groaned. Please let this be a short call. Nurse B came into the nap room and removed my catheter (OUCH) and the many miles of wadding that was packed into my vag (OUCH x 1023). She left me to cry by myself a bit, and then it happened... "Dr F to the Sim Room" - he was being paged again. Crap! I had overheard that a new patient was having her first radiation - the sim - and she had seemed nervous. If Dr F was being paged, it meant there was a problem. Please let this be a quick-fix. But no. It was not to be. Nurse B came in an took out my IV, but that was all she could do.
Dr F needed to remove the tubes, but he was giving other patients the kind of care that I so appreciate him giving me. There I was, lying alone in a room in pain, knowing that John was in the waiting room, having been told it would be about 20 minutes over 30 minutes ago. I waited there for over an hour, and by the time Dr F came in, I was sobbing. I couldn't look at him. I felt forgotten, and by that time I was irate. I let him have it.
"What can I do?" he asked with genuine concern.
"Next time, don't forget me" I snapped back.
"I understand how you feel" he sympathized.
"Go home and stuff three lollipops up your rectum and leave them there for the weekend, and THEN you'll know how I feel" I retorted.
I was not at my best. Dr F was doing his best to apologize, and I was angry and bitter and hurt and insulted. And it showed. But he rose above it and went to talk to John. He apologized for the long wait. John told him that I speak very highly of him, and his response was "Well, she might not after today." But you are wrong, Dr F. I do still think highly of you. Yes, I eavesdropped; but because of the what I overheard, I know you were doing for others what you do for me. And that is to do whatever you need to in order to give the best care. I just happened to need 5 minutes of your time when you didn't really have an easy out. I trust this won't happen again.
But Dr F also had some troubling news. My small bowel is still too close to my uterus, and therefor too close to the high-dose radiation. The exposure will cause damage, but the treatment is too important in killing my cancer. I had a CT-scan this morning while laying on my stomach to see if that makes a difference. If it does, I will get treatments in that position (but while resting, I'll still be able to lay on my back). If that doesn't make a difference, it will mean more surgery to move the bowel. And - lucky me - they can do it laparoscopically!!! If anyone doesn't get that sarcasm, revisit this post. So everyone, please knock me some wood - you know I am! I should find out on Tuesday.
my two-headed dog might be staying a while
Yesterday was chemo. I was so calm in advance that I didn't even need a Vitamin V. But that's a double-edge sword: good that I'm calm about chemo, but is chemo something I really wanted to ever get so used to that I'd be calm about it? While Nurse M was hooking up my port, we had a little chat. First, she explained that even though I'm only scheduled for two (!) more chemo sessions, they won't remove my port for probably six months. They do this just in case the follow up requires more chemo. Makes sense, but I was really hoping to be rid of this two-headed dog.
Here is an artist's rendering of me during treatment (thanks, Jer):
Next, we talked about that being the third day in a row that my port got stuck. Nurse M was concerned because being stuck so many days in a row could lead to lots of scarring since the needle is going over and over into the same spot. She suggested that I get a Huber Needle (click for pic). This is a shorter needle that will be inserted on Tuesday when I get my blood drawn, and covered with a large clear dressing. A small capped-off IV tube will be attached. Then on Wednesday when I go for Brachytherapy, the IV will just need to be hooked up instead of my port being accessed. And then Thursday for chemo, they'll use that same hook-up. When chemo is over, they'll take it out. Because right now, my skin is getting abused (click for pic). This is a good thing, because it will make it easier for me and mean less scarring. But it's kinda freaky to me that I'll have this needle in my chest from Tuesday morning to Thursday afternoon. But I'll probably do it anyway.
this is so funny, it's leaving me in stitches
And now, I not only have a stitch sticking out, I have two stitches! I think it is actually one stitch, but now both ends have worked their way out. It's really freaking hard for me not to pick at it (wanna revisit my picking fetish? revisit this post...). Plus, it's freakish. (click for pic)
So that's about it for today. For those of you keeping score, I'm over halfway through this battle!!!
Thanks everyone for the supportive emails and calls and cards and comments! It means the world to me to have you hanging in there with me during this ordeal =)
07 October 2008
a dream to end all dreams
The other night, as usual, I fell asleep before John. He was still watching TV, but I was in dreamland. | |
As soon as he turned off the TV, I woke up and kinda freaked him out! To hear him say it, I was talking, trying to tell him something. | |
Something important. But I just couldn't find the words. | |
The dream had been so beautiful, I could see it perfectly in my mind. But all I could say was "I can't think of the words..." | |
But the next day, I was able to recall it fully, and I share it with you now: | |
The cancer is a chain around me - not binding me, but encircling me. | |
The love from my family & friends is dissolving the links | |
until there are only two left. | |
John and I each kiss one of those two links and - | |
* POOF * my cancer is gone! |
01 October 2008
you brachy mine, I breaky yours
or
how to stuff a wild bikini poonani
***WARNING: This post contains adult language and may not be suitable for youngsters.
I had been looking forward to this day for a few weeks now. Maybe "looking forward to" is a bit of an exaggeration. "Dreading" is more accurate. Because today was the day of my first Brachytherapy, the first of five Internal Radiation Therapy sessions.
Dr F had explained Brachytherapy for me by saying "you will be very uncomfortable," which didn't give me much confidence in the day. Especially since I have been uncomfortable all week with what I like to call Consti-rrhea (or should that be Dia-pation?). The chemo drugs cause one, the radiation causes the other. Logically, this should mean they cancel each other out and leave me in a happy regulated state. But no. It means I'm both. Simultaneously. And they don't make drugs that treat both simultaneously...
And to make matters even more uncomfortable, I found out yesterday that although I wouldn't have to utilize the same bowel prep I had previously used (remember the magnesium citrate?), I would have to partake of some morning-of prep that was... shall we say... quite a jolt up the ass. But we'll get to that in a minute.
As for the Brachy itself, I had an image in my mind. And that image was that bit of plutonium that Homer Simpson accidentally brings home being shoved up my hoo-hah, glowing green for 10 minutes or so. But I couldn't be further from the truth. The truth about Brachy is that the Iridium-192 seed is smaller than a grain of rice. And what is actually shoved up my hoo-hah are three applicators; intra-va-jay-jay tubes that have receptacle tips to hold the Iridium. And around these tubes is placed yards and yards of packing material. (Click here to read more)
So here's how my day went:
Woke up at 4:30 am to face the ultimate in humiliation. And to make it even more humiliating, I'm including the picture from the instructions that are printed on the outside of the Fleet® enema box, so that the guy at the check-out counter at the drug store can visualize what you'll be doing, thereby heightening your embarrassment. Let us bow our heads for a moment and thank the gods of humiliation. Thank you, gods of humiliation, for letting me cross one more demeaning, shitty task off my list of things I wish to never do. Let's move on.
We arrived, as instructed, at 6:00, and were told that I needed to get labs drawn but the lab didn't open until 6:30. So John & I went over to the lab waiting room to wait. When the time had come, the nurse called me to the window (I was the only customer). Remember, Reader, that port I got installed a few weeks ago? The one I went through hell to get? The one that freaks me out more than a two-headed dog? The point of this port is that as long as it's in me, I will have no reason to get stuck in a vein. Ever. But when I explained this to the nurse in the lab, she explained right back that they don't do that there; they are not certified to do blood draws through ports. Oh really? Well, you can cross my name off your list, Miss Thing, because I will find someone else who is certified!
We went up to the second floor and rehashed the whole lab ordeal with the Same Day Surgery Intake Lady who called Nurse D who said that she was more than willing to sort it all out. They called me in, I kissed John goodbye, and my real adventure began.
This was the forth time my port was to be accessed. Generally, this is how it goes.
How it went today was quite different. Nurse D was obviously not well versed in the whole "deep breath" of it all. Instead, she counted "1... 2... 3... " and I had to know to take that breath all on my own. And it kinda hurt. And she kept touching it. And then, even though I asked her not to tell me what she was doing, she kept talking about it with her accomplice Nurse C. And the big issue was: she was trying to get blood for labs, but the blood would not flow. Do you know why? Because when I panic, my blood pressure drops to like 80/30. No blood pressure, no blood flow. I get it. You get it. She didn't seem to get it. She kept trying to move me around: raise my head, raise my arm over my head, sit me up more, etc... In the end, what really worked was getting me talking about Dr T (the a-hole that installed my port in the first place) and my blood pressure rose and rose and the blood, she did a-flow! But I've learned a good lesson - next week, I'll get labs drawn on Tuesday by the ones that do it regularly and know to say "deep breath".
The plan was that I would be anesthetized, Dr M would do an exam under anesthesia, and Dr F would insert the applicator tubes in my sanjaya. I would be woken up and brought to the radiology floor of the ROCk (I learned today that the Regional Oncology Center shares a nickname with Alcatraz. Coincidence? I think not.) Dr S, the anesthetist, explained first that I would get 2 doses of Versed, which I tried to tell him doesn't so much as chill me out as make me talk alot, but once I got them I said "Dude, it worked this time!" I have a vague memory of being brought into the operating room, and once again asking who picked the music. But after that, nada...
When they woke me up, I had to pee. I don't mean a little tinkle or a nervous piddle, I mean a giant man-sized piss. So I tried to get up, but Nurse W kept telling me "It's ok honey, you have a cath." It was the cath that made me feel like peeing in the first place!
Nurse W was very good to me with the drugs. Having three test tubes and yards and yards of packing stuffed in your cooch is, as Dr F warned and you might imagine, UNCOMFORTABLE. It didn't hurt necessarily. But it never stopped being uncomfortable. And to add to the joy of it all, I couldn't move. I had to lay on my back, with my legs slightly askew. So Nurse W made good with the pharmaceuticals: Morphine, Demerol, and Vistaril. The only bad part was that the Vistaril and Demerol had to be injected into a muscle (combined, just one shot), no matter how hard I argued for the port.
After about an hour in recovery, Orderly T came and pushed me through the secret hallways that connect the Professional Center (which houses Same Day Surgery) with the ROCk. When we got there, Nurse K met us in the CT-scan room and I was transferred to the very narrow CT-scan table. Here I was given - you guessed it - a CT-scan. They needed to have a picture of my pooter with the tubes inside with dummy-radioactive material to know exactly where in the reservoir tip to put the Iridium seeds. This is called planning and apparently, it involves a whole team of experts and takes a few hours. During the planning, I was slid back onto the stretcher and pushed into a dimly lit quiet room where I took a 2-hour nap.
When I woke up, the uncomfortable was pretty much gone. I equate it to the pain of a tattoo - eventually, you just get used to it. What wasn't gone was my irate mental state. I. Wanted. To. Go. Home.
Now.
But I had to wait until after 1:00. They came and got me and brought me to the very high-tech HDR room. HDR=high dose radiation. HDR is one option for Brachy. The other is LDR (low dose radiation) where a low dose is left in for hours at a time. With HDR, the Iridium seeds are only in place for a few minutes. Pneumatic arms are attached to the openings of the tubes, and the Iridium is inserted via remote control. It's left there for 12 minutes, and then it's over.
Then the REAL fun begins! Dr F tried with all his finesse to make this a less painful process, but unpacking several yards of linen from the vag is never pleasant. Whatever lube they used getting the stuff in there had long ago been absorbed, and I was left with coils of fabric stuck to the inside of my peesh. Dr F and Nurse B pulled quick, like taking off a band-aid, but it was like a clown pulling a scarf out of its mouth. They just kept pulling and pulling and more and more kept coming. Finally, the packing material was out, and it was time to remove the tubes. Which are shaped more like lollipops than test tubes, with the big part all the way to my cervix. I will spare you the gory details, but suffice it to say it was NOT ENJOYABLE!!!
The only thing left was for Nurse B to flush my port and remove the needle. Which had grown accustomed to its accommodations and didn't want to leave. But before long, it was all over, and John was able to take me home. HOORAY!
I've been in bed since. Kinda loopy from the anaesthesia, kinda uncomfortable in the groinal area, definitely glad to cross Brachy 1 off the list :)
For those keeping score:
Oh, and my stitch is still sticking out. ICK!!!!
Thanks again for your continued well-wishes, support, phone calls, emails, cards, care packages, and cheering-up. I am courageous vicariously through you :)
I had been looking forward to this day for a few weeks now. Maybe "looking forward to" is a bit of an exaggeration. "Dreading" is more accurate. Because today was the day of my first Brachytherapy, the first of five Internal Radiation Therapy sessions.
Dr F had explained Brachytherapy for me by saying "you will be very uncomfortable," which didn't give me much confidence in the day. Especially since I have been uncomfortable all week with what I like to call Consti-rrhea (or should that be Dia-pation?). The chemo drugs cause one, the radiation causes the other. Logically, this should mean they cancel each other out and leave me in a happy regulated state. But no. It means I'm both. Simultaneously. And they don't make drugs that treat both simultaneously...
And to make matters even more uncomfortable, I found out yesterday that although I wouldn't have to utilize the same bowel prep I had previously used (remember the magnesium citrate?), I would have to partake of some morning-of prep that was... shall we say... quite a jolt up the ass. But we'll get to that in a minute.
As for the Brachy itself, I had an image in my mind. And that image was that bit of plutonium that Homer Simpson accidentally brings home being shoved up my hoo-hah, glowing green for 10 minutes or so. But I couldn't be further from the truth. The truth about Brachy is that the Iridium-192 seed is smaller than a grain of rice. And what is actually shoved up my hoo-hah are three applicators; intra-va-jay-jay tubes that have receptacle tips to hold the Iridium. And around these tubes is placed yards and yards of packing material. (Click here to read more)
So here's how my day went:
Woke up at 4:30 am to face the ultimate in humiliation. And to make it even more humiliating, I'm including the picture from the instructions that are printed on the outside of the Fleet® enema box, so that the guy at the check-out counter at the drug store can visualize what you'll be doing, thereby heightening your embarrassment. Let us bow our heads for a moment and thank the gods of humiliation. Thank you, gods of humiliation, for letting me cross one more demeaning, shitty task off my list of things I wish to never do. Let's move on.
We arrived, as instructed, at 6:00, and were told that I needed to get labs drawn but the lab didn't open until 6:30. So John & I went over to the lab waiting room to wait. When the time had come, the nurse called me to the window (I was the only customer). Remember, Reader, that port I got installed a few weeks ago? The one I went through hell to get? The one that freaks me out more than a two-headed dog? The point of this port is that as long as it's in me, I will have no reason to get stuck in a vein. Ever. But when I explained this to the nurse in the lab, she explained right back that they don't do that there; they are not certified to do blood draws through ports. Oh really? Well, you can cross my name off your list, Miss Thing, because I will find someone else who is certified!
We went up to the second floor and rehashed the whole lab ordeal with the Same Day Surgery Intake Lady who called Nurse D who said that she was more than willing to sort it all out. They called me in, I kissed John goodbye, and my real adventure began.
This was the forth time my port was to be accessed. Generally, this is how it goes.
- Bonez: I'm a wuss. Lay me down flat or I might faint. (Head turns in opposite direction) Please don't tell me what you're doing.
Nurse: Ok, deep breath!
stick
Nurse: Good blood return. Now just remember to breathe...
Bonez: Please don't tell me what you're doing. Sniff... Sniff... (tear rolls down cheek)
Nurse: Ok, please breathe!
How it went today was quite different. Nurse D was obviously not well versed in the whole "deep breath" of it all. Instead, she counted "1... 2... 3... " and I had to know to take that breath all on my own. And it kinda hurt. And she kept touching it. And then, even though I asked her not to tell me what she was doing, she kept talking about it with her accomplice Nurse C. And the big issue was: she was trying to get blood for labs, but the blood would not flow. Do you know why? Because when I panic, my blood pressure drops to like 80/30. No blood pressure, no blood flow. I get it. You get it. She didn't seem to get it. She kept trying to move me around: raise my head, raise my arm over my head, sit me up more, etc... In the end, what really worked was getting me talking about Dr T (the a-hole that installed my port in the first place) and my blood pressure rose and rose and the blood, she did a-flow! But I've learned a good lesson - next week, I'll get labs drawn on Tuesday by the ones that do it regularly and know to say "deep breath".
The plan was that I would be anesthetized, Dr M would do an exam under anesthesia, and Dr F would insert the applicator tubes in my sanjaya. I would be woken up and brought to the radiology floor of the ROCk (I learned today that the Regional Oncology Center shares a nickname with Alcatraz. Coincidence? I think not.) Dr S, the anesthetist, explained first that I would get 2 doses of Versed, which I tried to tell him doesn't so much as chill me out as make me talk alot, but once I got them I said "Dude, it worked this time!" I have a vague memory of being brought into the operating room, and once again asking who picked the music. But after that, nada...
When they woke me up, I had to pee. I don't mean a little tinkle or a nervous piddle, I mean a giant man-sized piss. So I tried to get up, but Nurse W kept telling me "It's ok honey, you have a cath." It was the cath that made me feel like peeing in the first place!
Nurse W was very good to me with the drugs. Having three test tubes and yards and yards of packing stuffed in your cooch is, as Dr F warned and you might imagine, UNCOMFORTABLE. It didn't hurt necessarily. But it never stopped being uncomfortable. And to add to the joy of it all, I couldn't move. I had to lay on my back, with my legs slightly askew. So Nurse W made good with the pharmaceuticals: Morphine, Demerol, and Vistaril. The only bad part was that the Vistaril and Demerol had to be injected into a muscle (combined, just one shot), no matter how hard I argued for the port.
After about an hour in recovery, Orderly T came and pushed me through the secret hallways that connect the Professional Center (which houses Same Day Surgery) with the ROCk. When we got there, Nurse K met us in the CT-scan room and I was transferred to the very narrow CT-scan table. Here I was given - you guessed it - a CT-scan. They needed to have a picture of my pooter with the tubes inside with dummy-radioactive material to know exactly where in the reservoir tip to put the Iridium seeds. This is called planning and apparently, it involves a whole team of experts and takes a few hours. During the planning, I was slid back onto the stretcher and pushed into a dimly lit quiet room where I took a 2-hour nap.
When I woke up, the uncomfortable was pretty much gone. I equate it to the pain of a tattoo - eventually, you just get used to it. What wasn't gone was my irate mental state. I. Wanted. To. Go. Home.
Now.
But I had to wait until after 1:00. They came and got me and brought me to the very high-tech HDR room. HDR=high dose radiation. HDR is one option for Brachy. The other is LDR (low dose radiation) where a low dose is left in for hours at a time. With HDR, the Iridium seeds are only in place for a few minutes. Pneumatic arms are attached to the openings of the tubes, and the Iridium is inserted via remote control. It's left there for 12 minutes, and then it's over.
Then the REAL fun begins! Dr F tried with all his finesse to make this a less painful process, but unpacking several yards of linen from the vag is never pleasant. Whatever lube they used getting the stuff in there had long ago been absorbed, and I was left with coils of fabric stuck to the inside of my peesh. Dr F and Nurse B pulled quick, like taking off a band-aid, but it was like a clown pulling a scarf out of its mouth. They just kept pulling and pulling and more and more kept coming. Finally, the packing material was out, and it was time to remove the tubes. Which are shaped more like lollipops than test tubes, with the big part all the way to my cervix. I will spare you the gory details, but suffice it to say it was NOT ENJOYABLE!!!
The only thing left was for Nurse B to flush my port and remove the needle. Which had grown accustomed to its accommodations and didn't want to leave. But before long, it was all over, and John was able to take me home. HOORAY!
I've been in bed since. Kinda loopy from the anaesthesia, kinda uncomfortable in the groinal area, definitely glad to cross Brachy 1 off the list :)
For those keeping score:
Oh, and my stitch is still sticking out. ICK!!!!
Thanks again for your continued well-wishes, support, phone calls, emails, cards, care packages, and cheering-up. I am courageous vicariously through you :)
24 September 2008
ladies and gentlemen, we're coming into some turbulence: please put your tray tables and seat backs in an upright and locked position
They told me it would be a bumpy ride, and they weren't kidding! Please pass the barf bag!
Well, to be fair, I haven't actually barfed. I've wanted to barf. I've thought I might barf. I've felt as if I was going to barf. But no barf yet (knock wood with me, people). This is me thinking "wow, I feel pretty good today". But...
What I have had is wicked bouts of nausea. When they talk about nausea with chemotherapy, they mention that it should go away within 48 hours. Since my nausea didn't really start until 72 hours after chemo, I have to believe it is because of the radiation. I have two anti-emetics (Phenergen and Reglan) but they seem to work when they want to rather than when I need them to. I plan to chat with Dr F on Friday and see if there is anything else he can offer.
But I didn't intend for this post to be about barf. Or nausea. Or anti-emetics. I intended this post to be an in-depth look atMy Daily Radiation A sort-of day in the life of my morning routine.
I arrive at the Center at 9:10. I sign in and slap on a name tag, then head to the changing room. Here I strip from the waist down (you can see my shorts hanging on the hook) and put on a lovely gown that ties in the back. Then I sit and wait. When they're ready, one of my team will come get me. I follow them back to the room with the big door. There is a computer monitor on the wall that I have to verify shows my name, and state my date of birth.
Then I lie down on the table. My legs go into the blue foam mold that was made what seems like a lifetime ago. I am covered up to my hips in a blanket, and have to expose my stomach so they can line up the tattooed dots. There are lasers that make a big cross - one line goes through the dots on my hips, the other line goes through the dots on my abdomen. If they have to move me, they pull the sheet I'm laying on, or they move around the leg mold. I don't do anything but lie still.
You might realize how hard it is for me to actually lie still. What makes it even more difficult is that they have a radio on, and often times there is a lively song that I would like to dance to. Today, it was Vogue by Madonna. Do you have any idea how many times I have heard that song in my lifetime that I did NOT do the Vogue dance from the video? I can tell you - exactly one. Today. It was torture to have to be still! But I can sing all I want, so at least that is some concession.
Once I'm in position and lying still, they rotate the x-ray accellerator so that it is below me. They leave the room. A red light comes on, and then the beeeeeeeeeeeeeeeeeeeeeeeep that lasts for 25 seconds. Then they come in. Switch the plates, rotate the accellerator to the top of me, leave the room, red light comes on, beeeeeeeeeeeeeeeeeeeeeeeep for 20 seconds. They come in, lower the table, remove the leg mold. I get up and leave.
This is my linear accellerator, with my blue leg-mold at the end. I am getting 15 mega-volt photons shot at me through plates that direct the x-ray beams through 9 different angles. I will have a total of 4500 centi-Gray units of absorbed radiation by the end of the 25 sessions of Intensity Modulated Radiation Therapy. What does that all mean? Who knows - it is not my job to know, it is the job of Dr F and the rest of my team. I place my future in their hands daily, and trust that they will take care of me.
So that's about it. The only variation is that every Wednesday, after they've done the radiation treatment, they also take x-rays to make sure everything is still lined up the way it should be.
And to top it all off, I have a stitch. No, not that Stitch. An actual stitch. Sticking out. From when they put my port in. Wanna see? Click here...
For those of you keeping score, it's external 6, chemo 1
As always, thank you so very much for you continued support! I don't know how I'd make it through the hard times without knowing you are all out there rooting for me :) I hope to never have to repay the favor!
Well, to be fair, I haven't actually barfed. I've wanted to barf. I've thought I might barf. I've felt as if I was going to barf. But no barf yet (knock wood with me, people). This is me thinking "wow, I feel pretty good today". But...
What I have had is wicked bouts of nausea. When they talk about nausea with chemotherapy, they mention that it should go away within 48 hours. Since my nausea didn't really start until 72 hours after chemo, I have to believe it is because of the radiation. I have two anti-emetics (Phenergen and Reglan) but they seem to work when they want to rather than when I need them to. I plan to chat with Dr F on Friday and see if there is anything else he can offer.
But I didn't intend for this post to be about barf. Or nausea. Or anti-emetics. I intended this post to be an in-depth look at
I arrive at the Center at 9:10. I sign in and slap on a name tag, then head to the changing room. Here I strip from the waist down (you can see my shorts hanging on the hook) and put on a lovely gown that ties in the back. Then I sit and wait. When they're ready, one of my team will come get me. I follow them back to the room with the big door. There is a computer monitor on the wall that I have to verify shows my name, and state my date of birth.
Then I lie down on the table. My legs go into the blue foam mold that was made what seems like a lifetime ago. I am covered up to my hips in a blanket, and have to expose my stomach so they can line up the tattooed dots. There are lasers that make a big cross - one line goes through the dots on my hips, the other line goes through the dots on my abdomen. If they have to move me, they pull the sheet I'm laying on, or they move around the leg mold. I don't do anything but lie still.
You might realize how hard it is for me to actually lie still. What makes it even more difficult is that they have a radio on, and often times there is a lively song that I would like to dance to. Today, it was Vogue by Madonna. Do you have any idea how many times I have heard that song in my lifetime that I did NOT do the Vogue dance from the video? I can tell you - exactly one. Today. It was torture to have to be still! But I can sing all I want, so at least that is some concession.
Once I'm in position and lying still, they rotate the x-ray accellerator so that it is below me. They leave the room. A red light comes on, and then the beeeeeeeeeeeeeeeeeeeeeeeep that lasts for 25 seconds. Then they come in. Switch the plates, rotate the accellerator to the top of me, leave the room, red light comes on, beeeeeeeeeeeeeeeeeeeeeeeep for 20 seconds. They come in, lower the table, remove the leg mold. I get up and leave.
This is my linear accellerator, with my blue leg-mold at the end. I am getting 15 mega-volt photons shot at me through plates that direct the x-ray beams through 9 different angles. I will have a total of 4500 centi-Gray units of absorbed radiation by the end of the 25 sessions of Intensity Modulated Radiation Therapy. What does that all mean? Who knows - it is not my job to know, it is the job of Dr F and the rest of my team. I place my future in their hands daily, and trust that they will take care of me.
So that's about it. The only variation is that every Wednesday, after they've done the radiation treatment, they also take x-rays to make sure everything is still lined up the way it should be.
And to top it all off, I have a stitch. No, not that Stitch. An actual stitch. Sticking out. From when they put my port in. Wanna see? Click here...
For those of you keeping score, it's external 6, chemo 1
As always, thank you so very much for you continued support! I don't know how I'd make it through the hard times without knowing you are all out there rooting for me :) I hope to never have to repay the favor!
18 September 2008
ladies and gentlemen, the captain has turned off the fasten seatbelt sign: you are now free to move about the cabin
"But in the event of unexpected turbulence, the captain requests that you keep your seatbelt fastened while seated."
So today was another big milestone on this trip to No More Cancer: my first chemo.
MT Jeanne went with me to lend moral support (John had to work). It was good for me because she can put on her nurse's hat and talk me through the rough times. It's also good for you, because she LOVES to take pictures! Without her, this might have just been a boring text-filled post. Let's begin:
Here I am shortly after being hooked up.
I did not enjoy this process: it hurt a little, and then that whole fluid-phobia kicked in. But after a few minutes, I calmed down and was able to enjoy some take-my-mind-off-the-whole-process activities.
Like knitting! I worked for a while on this scarf.
And journaling in my Vera Bradley Mod Floral Pink notebook. If you feel like you must do something to make me feel better, VBMFP might be the way to go! LOL
And, as one can expect wherever MT Jeanne is involved, playing Scrabble!
I was about to make my game-winning play when Nurse SP told me I was done and could go home. Next time, MT J!
I also spent a great deal of time wheeling my IV pole to and from the bathroom. No, I wasn't puking; I had good drugs for that. But I did have to pee about a thousand times during the process (actually, it was more like 5). This is good, because the chemo that I'm getting is renal-toxic, so they like to see my kidneys getting a good flushing. Sadly for you, MT J didn't get any pics of this :(
It might interest you to know that I'm getting the top-of-the-line chemo drug: Cisplatin. Why is it so good? Cisplatin is platinum. That's right, platinum. Not tin, not stainless steel, not silver, not gold. Platinum, baby. Only the best for Bonez! I wonder if my internal treatments will be with radioactive diamonds?!?
And see, at the end of it all, I was still smiling (kinda)!
So far, I feel pretty fine. No nausea yet (knock wood). (Please, I mean it. I'm really superstitious. You'd better be knocking...) I'm just really tired. Which is convenient because all I wanted to do anyway was lay down and watch TV while playing on my laptop!
And tomorrow, I have my first massage therapy to look forward to. I'm sure I'll get over that "don't touch me" thing REALLY quickly!
Again, I can't thank you enough for all your words of encouragement and support. I feel your arms around me and it gives me strength :)
Until next time...
So today was another big milestone on this trip to No More Cancer: my first chemo.
MT Jeanne went with me to lend moral support (John had to work). It was good for me because she can put on her nurse's hat and talk me through the rough times. It's also good for you, because she LOVES to take pictures! Without her, this might have just been a boring text-filled post. Let's begin:
Here I am shortly after being hooked up.
I did not enjoy this process: it hurt a little, and then that whole fluid-phobia kicked in. But after a few minutes, I calmed down and was able to enjoy some take-my-mind-off-the-whole-process activities.
Like knitting! I worked for a while on this scarf.
And journaling in my Vera Bradley Mod Floral Pink notebook. If you feel like you must do something to make me feel better, VBMFP might be the way to go! LOL
And, as one can expect wherever MT Jeanne is involved, playing Scrabble!
I was about to make my game-winning play when Nurse SP told me I was done and could go home. Next time, MT J!
I also spent a great deal of time wheeling my IV pole to and from the bathroom. No, I wasn't puking; I had good drugs for that. But I did have to pee about a thousand times during the process (actually, it was more like 5). This is good, because the chemo that I'm getting is renal-toxic, so they like to see my kidneys getting a good flushing. Sadly for you, MT J didn't get any pics of this :(
It might interest you to know that I'm getting the top-of-the-line chemo drug: Cisplatin. Why is it so good? Cisplatin is platinum. That's right, platinum. Not tin, not stainless steel, not silver, not gold. Platinum, baby. Only the best for Bonez! I wonder if my internal treatments will be with radioactive diamonds?!?
And see, at the end of it all, I was still smiling (kinda)!
So far, I feel pretty fine. No nausea yet (knock wood). (Please, I mean it. I'm really superstitious. You'd better be knocking...) I'm just really tired. Which is convenient because all I wanted to do anyway was lay down and watch TV while playing on my laptop!
And tomorrow, I have my first massage therapy to look forward to. I'm sure I'll get over that "don't touch me" thing REALLY quickly!
Again, I can't thank you enough for all your words of encouragement and support. I feel your arms around me and it gives me strength :)
Until next time...
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