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 at
My 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!

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...

17 September 2008

ladies and gentlemen, this is your captain speaking: we are cleared for take-off

Oh crap, here we go...

So why am I smiling?

Well, first of all, because of this fabulous haircut! Isn't it cute? And so low-maintenance, it would make you sick!

Second, I am smiling - really smiling - because I have NO MORE TAPE!!! But I'm getting ahead of myself.   I am anal; I must go in order.

I had an appointment with my radiology oncologist Dr F on Monday morning. Dr F is now my favorite doctor (sorry Dr Hanley) because no matter what he tells you, he smiles while saying it. And he calls personally to talk about test results. And he likes Harry Potter. And most of all because he makes me feel like he's really on my side, rooting for me to get better. I thought I was just going for a pre-radiation consult that morning, but when I arrived I was told by Nurse B that it would in fact be a pelvic exam. Why not? I figured; everyone else has poked around in there, why not Dr F?
You might want to close your eyes, especially the men!
Remember, readers, that surgery I had a few weeks ago to move my ovaries? Well it was a success, my ovaries are working fine. And how do I know this? Because I got my period. Cruelly, again, for the 4th time since diagnosis, I have ovulated. This can make for a... let's say uncomfortable exam for both doctor and patient. But Dr F was not swayed. The exam went forward, and everything was as expected.
You can open your eyes now!

When the exam was over, Dr F solidified his standing as my favorite
-ologist. The cancer center I go to has it all: ground floor, radiology; next floor, oncology; top floor, chemotherapy. It is very convenient, especially when at least two days a week I will have to visit two of those floors. Unfortunately, because of a packed schedule, the radiology staff had told me that I would have to get radiation treatments at a different office. That would be a pain on the days when I have to have chemo and radiation, or lab work and radiation - I'd be driving all over town. So Dr F worked his doctor magic and after a brief conversation with the schedulers, came back to me and said "You're getting treatments here." And as if that wasn't enough, he gave me a written prescription for massage therapy twice a week! Gotta love that!!!

Tuesday was a packed schedule. In the morning, I had to get my port checked. I was dismayed when I was told enthusiastically by the receptionist that I would be seeing Dr T. You remember him - he's the one that pissed me off a few posts ago. So it was no surprise when my blood pressure was a little high. But truth be told, Dr T was very nice and told me that not only would I not have to keep taping gauze over the site, but I could also pull off the steri-strips! Yippee! Click here to see before and after pics.

Later that day, I went to my first radiology appointment. They will be giving me external radiation from several different angles, and during this appointment they would be taking films from those angles to make sure everything was lined up right. I laid down on a table with my legs in a mold that had been made a few weeks ago. They shimmied me this way and that, and finally, I was lined up. They drew on me, took their films, and made a few adjustments. Once everything was all set, they tattooed four dots on me - one on each hip to line me up laterally, and two on my stomach to line me up longitudinally.

So instead of thisI now have this

I can't tell you what a delight it was to be able to scrub off all the ink and marker and glue in the shower this morning! That smile in the top picture? That was taken right after. That is the smile of a cyborg that feels a little more human :)

And to top it all off, this afternoon, I had my first radiation treatment. It was amazingly quick. After going through the 8" nuclear-blast door, I laid down on the table with my legs in my mold. I got 25 seconds of radiation from below and 20 seconds of radiation from above. And that was it. I was a little tired when I got home, but I attribute that more to stress than side-effect. I will have 25 external beam and 5 high-dose internal treatments and then I'm done. One down...

Tomorrow I get my first chemotherapy treatment. Nurse T called today to tell me to pack a lunch, and to reassure me that I will be fine. And so I shall!

My deepest thanks for your support! Stay tuned...

11 September 2008

a little t.m.i.

I'm sure you'll get a good laugh out of this, but I assure you it is with great reluctance that I am posting it.

I originally wrote this blog just for the viewing pleasure of MO Paul. But his response made me laugh so much, I felt it needed to be shared. This is a little post I like to call

colon stones

Whenever you hear about someone getting a kidney stone, chances are your automatic reaction involves sucking in your breath and vocalizing some 'aaarrrrrr' uncomfortable noise. But I say kidney stones are a walk in the park. The real menace is colon stones.

Kidney stones are small; after all, they pass through the urethra, which is really really tiny. Colon stones, on the other hand, pass through the rectum, which in some cultures has been known to be the size of a grown man's fist.

Kidney stones can be broken up with lasers so that they pass more easily. Colon stones can be moved along with laxatives, but the stone itself doesn't shrink, it just gets loads of pressure built up behind it, adding further to the excruciating discomfort. No laser will help this rock!

I discovered colon stones during a recent influx of sedatives, pain killers, anesthesia, and other assorted medicines to "help" me. But no doctor ever warned me. There was no label stating that I wouldn't be able to make my daily constitutional for days at a time; nor that when I did, it would hurt like I was attempting to pass a boulder the size of... well, Boulder (Colorado).

The other morning, I was in so much pain that I thought at one point I would just simply vomit up all the excrement waiting patiently in my intestines rather than go through the agony of passing what had to be a 6" chunk of concrete.

When it finally passed, I was convinced for a second that what had shot out of me was not a colon stone, but instead my ovary - maybe my doctor stitched one in my large intestines and now it was gone! But that would be silly!

Or would it???

MO Paul's response:

Don't blame your medications. This is a family curse. I believe M.O. Leo has used my bathroom to pass a "colon stone" the size of one of your VWs.


09 September 2008

how to make a cyborg for fun and profit

This post contains graphic and disturbing descriptions.

In an effort to document all of my adventures in oncology, I feel a need to explain the human --> cyborg transformation.

I arrived as instructed at 9am. For this procedure, I had to go to a different hospital; a new, strange doctor would be doing the implanting. A lovely French woman called me the day before to explain that I would be put under conscious sedation. I assured her that I was VERY willing to be put out altogether, but she elaborated that there would be times that they'd need me to take a deep breath so I had to be able to hear them and do as they asked. Although I had been very nervous leading up to the day, I was cool as a cucumber in the waiting room that morning. Until...

They called my name at around 10:30 & said that once I was prepped, John would be able to come sit with me. I was told to "undress from the waist up; the gown ties in the back." I was delighted to be able to keep my jeans and socks on. I was told to get into the bed on the far left of the room. There were only two nurses working pre-op. One came and introduced herself, "Hi, I'm Irene. Judi and I are the only ones in here, so we'll be tag-teaming you today." The tag-teaming began with the insertion of the IV. Irene was very understanding about my various phobias and wussy-ness, and was very willing to put the IV in my hand despite the apparent bruising and scar tissue leftover from previous stickings. I also told her, as I tell everyone, that I didn't want to know what she was doing.

She very delicately stuck me in the hand, and it was excruciating. I have been stuck in the hand dozens of times and it never ever hurt like that. She took it right out, and tried another spot. This one had more scar tissue, because it was the one used most often in the past few months. She got the needle in, but because I was clenching my fist so tightly, she couldn't get anything flowing. She called Judi over, tagged out, and they switched places. Judi made a comment about my eagle claw, and once I relaxed my fingers, the IV was fine. Now John could come sit with me. Ok, hard part's over. Or so I thought.

We sat for hours. Waiting... Laughing... Being hungry... Worrying... Clock-watching... Finally, it was 1pm, John was starving, and I was ready for a nap. He kissed me goodbye, Judi brought me another heated blanket, and I began to doze. Of course, just as I was drifting off, they came for me. No more napping! They wheeled me down the hall, and into an elevator to the first floor, and down another hall into the radiation area. I was not in an operating room. I was in what looked like an x-ray room. I was told that they would be monitoring my heartbeat and blood pressure throughout, and that there was a slight chance that they'd need to introduce some contrast dye, but that was a long-shot.

And then I met Dr T. As with all my doctors, I was careful to explain my wussy-ness so that he would understand that I tend to hyperventilate when I know too much. My mantra is "don't tell me, just do it," and most of them are accommodating. But not Dr T. He was gonna do it his way. He wanted very badly to show me the implant, but I did NOT want to look. He went so far as to put the info-sheet in my face and point to the device, but I closed my eyes and said (I'm sure I screeched) "I DON'T WANT TO LOOK!!!" Dr T then went on to explain further the conscious sedation that I would be under. He said that I would know what they were doing, but I wouldn't care. Also, that they would be giving me something to numb the area, much like getting Novocaine at the dentist. I protested "BUT I'VE BEEN GETTING FILLINGS WITHOUT NOVOCAINE SINCE I WAS 6!!!" (Did I mention I don't like being numb?)

Despite all that, I was still relatively calm. I signed the consent form and suddenly activity sprung up all around me. They promised a sedative in my IV, which I suspect was Versed, because Versed doesn't so much calm me as give me diarrhea of the mouth. And I was talking. About what, I can't tell you. Perhaps the color of the room, the fact that there was no music, their personal histories (Jon enjoys his job, Joanne is from Montreal, Dr T is always a jerk), whatever came into my mind. Until...

They asked me to shimmy over to the narrow x-ray table. They asked me to shift myself until I felt like I was in the middle. Then they strapped me down. First was a seat belt across my legs. "Not that you'll try to get up, but just in case." Then came some straps on my arms. I had an itch on my face, but I couldn't move my arms to scratch. The panic began to set in. And then... Jon, formerly the very nice tech, turned my head toward the wall. He didn't ask me to turn my head, he turned it for me. This is when I lost it. I began to cry, which is my typical reaction in a situation where I'm completely out of control (like getting a filling or taking off in an airplane). For me, crying is a natural reaction to extreme stress. But Jon seemed to feel it was bad and asked Joanne to give me a little more sedative. And then...

He taped my head into place. I was facing the wall, and he wrapped tape around my head and the table. I couldn't move. I couldn't see what they were doing. I couldn't see them standing over me. I couldn't see them coming toward me. Jon tried to keep me calm, asking about my job & what I do there. I answered politely, but thought to myself you really need to come up with some new distraction questions. He warned me that he was going to do something cold, which he did several times. First he said "I need to find the vein in your neck." A little more panic. And then, alcohol, betadine, goo, whatever. It was all cold and it was all running down the left side of my neck. And then...

"Ok, just a little stick." And shortly after "another little stick." Possibly more Versed. And then...

They covered me in plastic. I don't mean a little plastic around where they were going to be working. I mean my entire body covered in a sheet of industrial serial-killer plastic. They taped it to my chin and down the left side of my body. This was to keep me from getting splattered. The only person I could see was Joanne, who every once in a while would peek under the plastic to ask how I was doing. She was covered from head-to-toe in a splat-suit, goggles and all.

To be honest, I didn't feel what they were doing. I know I was muttering and crying the whole time. At one point, Joanne paid me a visit and I told her honestly how I felt about the whole ordeal. "I feel like I'm being raped."

When it was all over, they had to give me some Benadryl because I was having a reaction to one of the antibiotics. My scalp was itching uncontrollably. When the itching stopped, they gave me more Benadryl because I still had hives. But at least it was over.

And now I am cyborg. I have an implant with a mainline into a vein on the right side of my chest. I haven't seen it, because it is covered with steri-strips with gauze dressing over that. It hurt the first day, but now it's ok. I feel it, I know it's there, but it doesn't hurt. What it does is itch. I'm apparently sensitive to the tape used for the dressing. At first it was just itchy, but now it's blistery and red and tender and sore. If you really need to see, click here for some pictures.

So that's that. The best thing I can say about getting this port is that now that I have it, I don't have to go through that ordeal again. That was the process I feared most, and it was way worse than I had expected. But it's over. And it's all downhill from here.


04 September 2008

"just because she is a cyborg does not make her our enemy" *

Yes, it's true. I am no longer human. I am cyborg.

But I shall start at the beginning...

Last week was... well, it was rough. In chronological order:
      Chemo Class
      Radiation Simulation
      CT Scan
      First full day of work since Aug 13
      MRI - both with and without contrast
      PET/CT Scan
      Lab Work x 7
Each day was a new adventure, a few more kilometers down the road to Survivorville. But will all that activity, it felt like a month crammed into one week.

Funny story: Before getting an MRI, they have you fill out this really extensive checklist that asks if you have any of the things that might cause some sort of malfunction during the procedure. "Do you have any pins in your bones?" No. "Do you have a plate in your head?" No. "Do you have any piercings that you have not removed?" No. "Do you have a shunt?" No. "Do you have tattooed eyeliner?" No. You get the idea. This went on for a full page, front and back. They follow that up with the comfortingly-worded waiver:
    "I,___________, understand that if I have not disclosed any of the aforementioned metal implants, the MRI procedure may result in permanent disfigurement or even death,"
which you MUST sign or they will just tell you to go home without any parting gifts.

Fast forward 20 minutes. I'm lying on the MRI table. My hands are stretched above my head, IV in place with iron filings (I can only assume) waiting to flow through my tender veins. The tech, who bears a striking resemblance to Paolo from this season's Shear Genius, has placed a squeeze-ball in my left hand that is attached to a bell. I am to squeeze this if I need assistance during the MRI, as all sane people will be in another room behind 18 inches of bullet-proof glass.

Now, I have had MRIs before. Claustrophobic though I tend to be, they have never really bothered me. Usually, I just fall asleep. And this was turning out to be no different. As I was being enveloped by the itty-bitty MRI tunnel, with Rachmaninov playing softly in my headphones, I began to drift into dreamland. And the thought occurred to me - what happens if you have a plate in your head but you need an MRI? What do they do then? And then, it hit me!

Squeeze Squeeze Squeeze Squeeze Squeeze Squeeze Squeeze
From the glass bunker: Yes, what is it?
Me, in a panic: I just remembered something!!!!
Paolo, frustrated, pulling me out of the tube: What is it?
Paolo, exasperated: Surgical clips are non-ferrous. You'll be fine. Now get back in there and lie still!

Paolo might've been all irritated about my freak-out, but you have to understand. As I was lying there in that torpedo-tube of an electro-magnet, a vision flashed into my head. And that vision was my ovaries, being ripped out of my body and sticking by their little metal clips to the inside of the MRI tunnel. Sure, I might've overreacted. Sure, I rang that bell seven times and made them stop the proceedings. But I really really didn't want to have gone through that whole laparoscopic nightmare just to have my ovaries become MRI tube interior decorating! Despite my panic, the MRI went fine.

I was back to the same facility bright and early the next morning for the PET/CT scan. The IV procedure for this was a mess. For those of you who haven't had personal experience with my wussy-ness, I will confess that I have a little bit of a freakout when it comes to IVs. I briefly mentioned in an earlier post that I have a problem with fluids, but it isn't just that. I also have issues with being stuck in the crook of my elbow; hence, I have always requested to be stuck in my hand. Yes, it hurts a little more, but at least I don't pass out. So for my MRI, they stuck me in the right hand. The waiver for that fluid explained that it would cause some bruising in the surrounding area (apparently iron filings aren't good for you - who knew?!?). They weren't kidding - bruised I was! So the next day, I had to go back and get another IV. The right hand was out, so they went to the left. Except the left is home to the Incredibly Collapsing Vessels, so that was a no-go. They begged to go into the crook of my elbow, but I held firm to my whining NO and they relented - they found a nice fat vein in my wrist. But when it was all over, I again remembered something: Lab Work. I needed to get lab work done that very day. Neither hand is viable. Wrist is out of the question. Oh shit, they're gonna have to go into the bad place. In all fairness to the lovely phlebotomist, it went very quickly and didn't hurt one bit. But I still cried like a little girl until it was all over.

And as if that wasn't bad enough... today, I was made into a cyborg. Yes, your darling Bonez now has a very fancy Port-A-Cath. And I bet you can guess what was the first thing they wanted to do? You got it - stick me! The nurses were very nice and although my hands were bruised and thick with scar tissue, they managed to get the IV in my hand (albeit on the second try). And this, ladies and gentlemen, is the very reason for getting this horrible port in the first place. Now, whenever they need to change my oil or top of my coolant, they can mainline it right into my chest with no sticking at all! Yippee! Yippee? No, not quite. Rather than getting stuck over and over, and collapsing countless veins, I now have this rather odd bottlecap attached to my chest. I feel like I have one of those orange sippers stuck in me. Anyone thirsty? Ewwww...

So that's where I am for now. Radiation is still in the planning phase, and chemotherapy will begin on the first Thursday after my first radiation. John & I are hanging in there, taking it day-by-day. Trying not to worry too much about what faces us. Vitamin V is helping. So are the countless chocolate muffins, pancakes, french fries, french bread, french bread, more french bread.

Thank you all for the support and love you have shown me. It is empowering to know that I have you all in my corner :)

With much love...

* Quote from Power Rangers S.P.D., 2005