Twentieth

Aaaaannnnddd that is why Casey Jo is generally a quiet person. She's learned to double and triple-check her thoughts before random, odd things come spewing out of her mouth (or off the tips of her fingers). The combo of ambien, percocet, and insomnia apparently removes those checks. Sorry.

=)

Merry Xmas everyone! Or Happy Holidays, or Peace in the New Year, or Best Wishes for you and your loved ones at this solstice time of fresh hope and renewal. I hope to see most of you, for those I don't, know that you're in my thoughts.

Cheers

Nineteenth

Spacey Casey, intrepid space explorer, has been cruising, wandering aimlessly for days with a meager and unappetizing food supply.

Alas! In the middle of another sleepless night Spacey Casey crash lands in the crater KI-chin, on the planet Kahn-doh 48.

She wanders from surface to surface, exploring all nooks and crannies, and braving cold interiors searching for something to sustain her.

Spacey Casey is lucky! A grayish-pink fish leaps out of a lower cavern to be eaten.

Unfortunately the fish is covered by a hard, silver skin and resists all attempts to open it.

Astoundingly, Spacey Casey's trusted laser pistol is recovered from another cranny and quickly works its way around the edge of the skin with a "Pop! brrr brrr brrr" noise.

Zounds! The peskiest inhabitant of this planet, the dreaded Snicker-dawg, has heard the crack of the fish opening, and appears to demand its share.

Spacey Casey kneels next to a lavishly decorated mat which contains a polished metal bowl to make her offering of the juice to the dreaded Snicker-dawg, murmuring plattitudes to the creature.

Even so the dreaded Snicker-dawg consumes the offering before Spacey Casey has finished preparing her fish, and tackles the hungry explorer, poking and prodding and demanding more of the scanty meal.

Summoning the last of her strength, Spacey Casey leaps to her feet and banishes the dreaded Snicker-dawg to the cold of the Pat-ee-oh, and finishes her meal in peace.

Ahhh. Nourishment for the coming hectic days.

Yet wait...

A presence stirs in the dark caverns above...

Has Spacey Casey disturbed the Queen of this Kahn-doh 48?

Can she survive the coming confrontation with the sleepy, overworked Queen?

Tune in next week for another rambling episode of, "Casey Jo Should Sleep More"!

(Donations being accepted to produce it in 3D!)

Eighteenth

My wound got smaller this week! Only millimeters smaller, but hey, I'll take it.

I went to the wound clinic today and they did measurements. There's a new ring of pale tissue around the sore, which I took to be dying tissue, but they tell me it's the pale and slightly pink color of new skin trying to grow.

It's kind of exciting, especially after last week when doc after doc pretty much said they can't fix me. I mean, I know I'm not going to be miraculously cured, but it was a bummer to hear it out loud from a lot of people last week. I was hoping in the back of my head that they'd at least be able to staple this stupid sore shut. Added to that was some personal stuff, and there've been bumps in our finances (like everybody else these days, it's insane out there) - anyway, it was a shitty week, so sorry if I was a downer to anyone I chatted with.

Cheers, and if I don't see you in the next couple of weeks, Merry Christmas!

Seventeenth

Howdy

So, no surgery for me. There are the concerns with infection and drainage, but also, a plastic surgeon would have to cut a flap of skin from my hip and swing it over (leaving some of it attached for the blood supply) to try and cover the hole from the tumor removal. It's just too major a surgery for someone who has cancer elsewhere - it's just not feasible to go through all that to remove this one tumor, when others could pop up anywhere else at anytime.

I'll start a new chemo drug called Gemzar next week to try and slow or halt the growth. It's a weekly infusion again. I'll also go back to the wound clinic to see if they can come up with a long-term plan to treat my wound.

Otherwise, things are just same-old around here. Sandra's mom gave us a new xmas tree, a really nice one. I've been working on lights for a week now lol. But it's the kind of tree that we can leave the lights on when we put it away, so I won't have to do this again next year. Yay!

Cheers

Sixteenth

Woohoo! Show and Tell.

Some of you wanted to see my wound - for those of you who don't, I'll try to make this post long enough that the pics won't show up unless you scroll down.

Attitudes regarding my tumor there have changed. I went to both the chemo doc and wound clinic on Thursday.

I won't be having anymore treatments of this drug Doxil. I can feel some new bumps and growth of this bigger tumor and the doc agrees. I'm having a scan next week so we can take measurements to see how much bigger and where it's going.

The doc at the wound clinic, seeing that the wound was worse and still draining a lot, thinks that as long as the tumor is pressuring up through the skin, it won't heal over. She says that really the best she can do is try to help me keep it from getting infected.

My surgeon is out of town, so I'll see him in two weeks to get his opinion. I may be having surgery again. If it's up to me, I vote for surgery. The concerns are still the same, but I'd rather be dealing with a clean-cut surgery wound, drain bulb, and hopefully no tumor, than dealing with this raw, free-draining sore with the growing tumor behind it. I guess it depends on the scan - we want to see what tissues the tumor is invading, and how active the cancer is in surrounding lymph nodes.

Alrighty, here's some pics - yes, those are pubes in some of the pics. Grow up.

This is all the stuff I lay out before I start.

Here's the wound. It's not infected, it's just that color. There's dead tissue that sloughs off from time to time.

This is the catheter and syringe I use to irrigate the hole. The catheter is marked in centimeter increments. In some places the hole is almost 4cm deep.

Here's me poking the ribbon into the hole. You can see that this makes the hole unhappy, but it only bleeds a little.

Then I wash my hands, slap some gauze and tape over the wound, wash everything down with antiseptic, and put it away til tomorrow (or sometimes just til tonight cuz the gauze gets saturated).

There ya go. If no surgery, I'll be starting a new chemo called Gemzar. It's a fast infusion, but I'll be back on a weekly schedule with it.

A few people have asked why this drug this time, why not more of drugs that have worked in the past, are we just shooting in the dark, etc. If a particular drug doesn't work, it plain doesn't work and more of it will not make a difference. If a drug works for a while, then stops working, it's because the cancer has evolved and developed an immunity to that drug - a higher concentration will not make the drug continue to work. As for which drug, it's based on past research and treatment. The doctors chose the first chemo because it had the highest success rate for people with this type of cancer. When that chemo didn't work or stopped being effective, they went to the drugs with the second best record, then to the third, fourth, and so on. So the odds for some response to the chemo get worse as we go down the list - but there has been a response in at least some of the people treated with any of these drugs, or we wouldn't bother. We're keeping an eye out on experimental stuff, though, you never know what these guys will come up with that might work.

Cheers

Fifteenth

Okay, so if I have to do it, you have to read about it. Cuz this gives me the willies and I need to pass them around (even though this would be kind of cool if I was helping someone else with it).

My wound where my tumor broke the skin is now about an inch in diameter. Basically a big open sore, the surface looks kind of like cauliflower, but white and red and purple. There's about half an inch of skin all around it that's puffy and sort of purply-blue.

I went to the wound clinic at LD on monday, where they cleaned it and taught me how to take care of it. The taking care of it is what is freaking me out a little bit. It's draining and trying to heal, but if it heals over before it's done draining, it'll just bust open again or get infected. I have to wash it with soap and water, which isn't a big deal. The ewwww factor comes next. The purply-blue skin around the sore is not really attached to the tissue underneath and that's where the draining fluids gather. So I have to stick a small catheter (attached to a syringe with saline) under that skin and work it around to flush everything out. Then, the wound has to be kept open so it will continue to drain. I get to pack it with a ribbon of gauze that's half an inch wide by about four inches long. I stick the end of the ribbon on a qtip and work it into the line between the sore and the puffy skin, and keep going until most of the gauze has disappeared into this oozing hole in my belly. I cover it with more gauze and some tape to protect it for the next time, about eighteen hours later. Then I shudder for about an hour remembering the feeling of the ribbon being packed in.

Stupid crappy cancer.

I was suprised that there was an entire clinic devoted to caring for wounds. My past experience has been, you have a booboo that heals or if it needs stitches or gets infected you just go to your doctor, or it takes a little longer to heal. I guess there are a lot of chronic wounds out there. Some are cancer related, some are due to a compromised immune system where the body simply doesn't have the resources to heal, some come up in conditions like diabetes and the body's circulation isn't good enough to allow the wound to heal.

The doc I saw didn't think my wound was too serious. She just said the biggest thing to watch for was infection, but the signs would be quick and obvious. I see her again in ten days, during which time the sore will probably continue draining as much as now. Ewww again. Surgery is not a good option. For one thing, I'd have to stop chemo treatments for about four months. For another, the tumor is just below my big scar from the last surgery, so between the scar tissue and the poor circulation and drainage because of my bad lymph nodes there, the surgery site might never heal and would be prone to infection.

I'm mostly just pissed off about it though. I can't take a soak in the bathtub with this thing on my gut. /sigh That used to be the highlight of my day, sinking up to my ears in all that warm water. Oh well, you do what you gotta do, right? I'll have to find a new hobby I guess lol.

Cheers

Fourteenth

Sorry, didn't mean to worry you, and I'm just going back to "alright" lol.

I just wanted to say I continue to appreciate your good thoughts and support. Between calls, notes, or even the lurkers - I feel cared for, and that's always a good feeling.

Well, I was going to start back to work but another fun thing happened. One of my tumors, about golfball-sized and just under the skin, the skin over it has split open and won't heal. It's not a big gusher like what happened last year, but it's having trouble healing because the tumor keeps pressuring up through the skin. The skin there has a lot of scar tissue, radiation damage and such, that's why it's having trouble. I've had the limit of radiation for that area, and surgery isn't a good idea because of the scar tissue, bad lymph nodes, and poor circulation and drainage. Infection would be very likely with surgery. I get to go to a "wound clinic" for advice on treating and closing the wound, and hoping this new chemo shrinks the tumor a bit so there isn't as much pressure on it.

They're taking me to see BodyWorlds today and I'm really excited. I've wanted to see it since I heard about the original in Germany, and I can't believe it's here in Salt Lake.

Cheers

P.S. I still have some strong feelings over the Prop 8 vote in California and local involvement. If you want to discuss it or even argue with me, let me know. All I ask is that you listen as respectfully to me as I will to you.

Thirteenth

For those of you who get mad at me when you ask "How are ya?" and I say "I'm alright". Okay, okay, I'm not alright. You have to understand though, this is just how I am now, this is my life, and compared to yesterday - yeah, I'm good. Compared to 4 years ago... well of course that's a whole 'nother story lol.

You say I should be giving more details? Well, you asked for it. Don't read any further if you don't want them - it's okay if you don't, frankly I'd rather not give them because I don't like to be this open about myself, but here goes.

Here's a nice pic of one of the funner side effects of this chemo.

I've got mouth sores all around the inside of my lips and cheeks, and on my tongue. Some of them bleed. Some of it is a response to this particular chemo (this family of drugs has a likelihood of mouth sores), and some is due to my immune system being on the fritz, and some is because chemo targets fast-growing cells like the ones that line your mouth, tongue, and digestive tract. You can see that all the chemo I've had has discolored my teeth, too. That happens from the inside out, so bleaching doesn't work, I'd have to get caps.
My finger and toenails are growing out though. They got all tender, bruised, oozing, and started to fall off like I had smashed each one with a hammer. Taxotere, that last drug I was on, causes that when you're on it long enough.

I'm not posting a pic of the one tumor that's right under my skin because it might be a little x-rated. It's right under my latest surgery scar and in among the "fuzzy triangle". I'm not real shy anymore though, so if you want to see it, I'll show it off. The tumor is about the size of a golfball or maybe a hard-boiled egg right now. The skin around it is discolored like a bruise and I get some sore stretch marks because of the fast growth. The whole area is pretty swollen because of the tumor and because of the damaged lymph nodes (poor circulation and drainage). It's swollen enough that one of my gay boyfriends says that I could wear a pair of boxerbriefs down to the bar one of these friday nights and win the "biggest junk" contest lol.

Let's see, what else. My feet and calves are swollen to about twice their normal size due to the lymphedema. They get pretty sore sometimes. The skin around my knees and ankles - you know how you can poke your finger hard into your skin and get a little bit of a divot that goes away within a few seconds? You can play with the skin around my leg joints like there's playdough under my skin. The divots don't go away for minutes and sometimes up to an hour.

I've lost all the fire-proofing in my mouth and stomach so I can't eat the spicy foods like I used to. Normal food regulary causes heartburn. That's due to the chemo killing the fast-growing cells along my digestive tract. I might have or get some ulcers. My guts are all messed up and I get to vistit the bathroom quite often. Sometimes with only a few seconds notice before it becomes really very urgent.

There's that feeling you get when you haven't eaten all day and kind of feel nauseous? That's generally a permanent thing with me these days. I can mostly ignore it because as you all know, I really do like my food. Sometimes the nausea gets bad enough I can't eat though, or sometimes I simply have no appetite for a while but forcing food down makes me nauseous. I randomly throw up - it doesn't happen often but it's really irritating because it doesn't seem to be in response to anything in particular - it's just random puking.

I'm still losing my muscles. I'm like, one of you mere mortals now. My energy is still low - I've been told that excercising more won't increase my stamina because I'm more or less running on reserves all the time these days.

My brain is kind of fuzzy. Especially short-term memory. It's hard to learn and remember new things. Kind of related is that I've lost some of my fine motor skills. Like beadwork is harder for me to do these days. Sometimes for a few days right after chemo, even typing on the keyboard goes pretty slow with lots of mistakes.

Wow, that's a lot of whining. See this is why I don't give details - I don't like whining and now some of you will give me that pity look because you don't know what to do. I'm still just me. Harass me as per usual.

You may ask why I put up with it. If this had all crashed down on me when I was first diagnosed, yeah, I would've just laid down and died. But it's been progressive over almost 4 years. It's like I said earlier, compared to yesterday, I'm okay. I put up with it at first in hopes of a cure, but these days, it's just how my life is. Do I still hope for a cure? Yes. And do miracles happen? Yes. But I can still find things that make sticking around rewarding, and I'm not giving up until I'm too sick to decide for myself whether or not I want to fight. Besides which, I owe too much to y'all for the help and encouragement you've given me - I hate being in debt, and maybe I can repay you some day if I don't give up.

So here's a picture of a bunny with a pancake on it's head.

Cheers

Twelfth

Howdy

I had the first treatment of this new drug, Doxil, last Thursday. So far I'm not impressed. I got into the habit of that weekly chemo, and fast side effects, so sitting around and waiting for this bomb to hit is making me crazy. They told me the biggest side effect they expected, given my history and long chemo run, is plummeting blood counts. I think they're right, since I've been getting more worn down everyday, and I'm cold a lot, which are usually good indicators that my red blood cells aren't rallying.

The suspension is pink. I sit there for two hours looking like I'm hooked up to a coolaid IV drip.

On the plus side, with the little break I had before starting this new drug, my hair and eyebrows have re-sprouted. Dark again. And not curly.

Since this treatment is only once a month, I guess I was expecting harsher side effects. I asked the doc about it, and he said treatment intervals generally had to do with the drug's half-life in the body. So in other words, the last chemo was weekly because my body used it up or broke it down within a few days. This chemo is monthly because the drug sticks around and works longer. Added up, the side effects shouldn't be more or less, better or worse, just longer coming and going.

The hunts were awesome even though I never got far from camp. My gun isn't quite finished, but was shootable so that's what I carried around while I saw not a single elk to shoot with it. My dad got an elk, but before his head gets too big over it, ask him about the tree he murdered, and about flinching.

/soapbox on
If you are against same-sex marriage, then don't get married to a gay person. It's really that simple. Please don't sign up for a phone list so you can call people in a whole different state to tell them God will drop the west coast into the ocean if two people who love each other want to have the legal responsibilities to go along with that love - it's just insulting to the people you know and love who may be queer. If you want to argue with me, bring it, I have reasonable answers to anything you can pelt me with, and have converted bigger homophobes than you.
/soapbox off

Cheers

Eleventh

Got my latest scan results back. Things are growing again. It's not hellatious growth, but the Taxotere is definitely not working anymore.

I get a few weeks off chemo, then on October 9th I'll start a new drug called Doxil. The side effects should be about the same, but with the addition of something called hand and foot syndrome. I guess my palms and feet will get red and crack and peel, but they do that in the fall and winter anyway. I only have to go in once a month for this chemo instead of once a week like I've been doing for 8 or 9 months now so that will be a nice break. I also won't have to take my favorite corticosteroid "Dex" anymore so that's exciting. I get to sleep again! With it being only once a month, I should also get to go back to work and off my couch once in a while.

Most of you know I sold the bike, and I also just sold my pickup. Between gas prices, Sandra working nights, it being hard for me to work that big clutch when my legs were acting up, and a few other things - we decided to become a one-vehicle household for now. The bike and the pickup both went to peeps who were excited to get them and seem to be able to take care of them, so it's all good. Pour one on the curb for 'em.

The rifle I've been building for years is almost done. It's a .280 Ackley improved. Elk rifle, built off of a WWII german Mauser. The ballistics perform close to a 7mm, for those of you who are curious. It's pretty cool. My dad's thrown a lot of money at it lately to help get it built, and some elbow grease, so now I have to finish the stock and we need to work up some brass and load some cartridges for it. It'll probably be shootable for this year's elk hunt. Very exciting. I'll post a pic of it and it's lovely electric blue and gray stock when it's done. Good thing elk are colorblind lol.

Cheers

Tenth

No chemo for me this week! Yay! Okay not really yay because I didn't have chemo because there's a problem with my port, but I'm still happy I didn't have a treatment this week.

My port-o-cath is clogged. That's my internal IV port that's just under the skin on my chest. A catheter runs from it, up under my collar bone, punches into my jugular, and the catheter continues down the vein to one of the big vessels next to the heart. I love it. They don't have to find a new spot every week to start an IV, and my veins aren't being damaged by the chemo because of the size and the flow volume of where the chemo gets dumped into my system.

Over time though, the catheter can get a build-up of gunk - mostly proteins that are apparently sticky molecules, and the end of the catheter can irritate the vessel and cause a little flap of scar tissue to form. So they pumped my port full of a fluid called TPA or Activase which is supposed to break the gunk down. Kind of like a drain cleaner. Yum. If it doesn't work I get to go to the hospital for an xray to see if there's a twist or something in the catheter.

We debated on having the chemo just in a vein, but I didn't want to, and they didn't really want to do that either, and since my blood counts are low enough I could use a small break in my schedule anyway, we'll just skip it this week. So I'm not any less tired, but my morale is up with this unexpected break. And it also means I get to eat this weekend. Hence, back to my original "Yay!".

Cheers

Ninth

Chemo again today. It went okay. They've added IV Magnesium to my schedule cuz I'm so low and my vitamins don't cut it anymore. Deficiency can lead to muscle weakness, cramps, and gut issues, among other things. It's not a bad infusion, it just keeps me in the chair longer every Wednesday.

I think this is the end of the seventh month on this schedule? I'm doing the next month as planned but then I'm taking a break for a month. That's my plan, but I haven't told the doc yet, so I hope he doesn't talk me out of it.

Cancer still sucks, and chemo still sucks. I haven't been to work for a while because of the fatigue. I start to shake sometimes when I do the dishes at home - I can just imagine they'd be thrilled to have me around all that delicate glassware and hot acid lol.

Sorry this post is kind of a downer - but the steroids I'm on (oh my lovely favorite Dexamethasone) kept me up last night, and the third treatment in a cycle generally puts me down a bit anyway. Just thought I'd better make my monthly post.

And I'm going hunting in a couple of months, so I'm excited about that. Well, I'll be in the forest wearing orange and sitting under a tree and napping while others hunt, but that's close enough for me at the moment. =)

Cheers

Eighth

So don't get too excited, but I got my latest scan/test results today with my chemo. This drug is not only slowing the cancer's growth, but slowing growth enough that the tumors and lymph nodes are actually shrinking. My tumor markers are down to almost a quarter of what they were three months ago.

The best we had hoped for was that it would slow growth enough that the spots wouldn't get any bigger - so for the tumors to be smaller and the scans showing the growth intensity was down... just, wow.

I'm having a hard time accepting news this good - all I can seem to focus on is that it means 4+ months more of chemo for me (I've had 5 months of continuous chemo so far this time). The doc thinks my body should tolerate it that long on this schedule, and if the drug is still working but my blood counts are too low, we'll start adjusting the schedule and down time so I can stay on it.

I asked, since the cancer is responding to this drug, if increasing the dosage would do more for me. But my blood counts are getting lower week to week, and he feels that increasing the dosage would do more harm than good - that my counts would plummet fast enough that I would have to miss some treatments, or discontinue treatments earlier. In other words, "it ain't broke at the moment, don't try to fix it".

Cancer still sucks, and chemo still sucks. I'm getting more fatigued week to week, the side effects still suck, and I catch every bug or virus that comes within a half mile of me which sucks. I'm short-tempered and whiny and frustrated at the people closest to me because I know they'll put up with it and it really isn't fair to them, and that sucks.

But it's awful nice to have some evidence that this crap is doing some good and buying me some time down the road. I just hope it's buying me some time down the road on my bike - I've had it out just THREE TIMES so far this year and to ride to work no less, not fun wander rides with my gang. It's really starting to piss me off. By the way, I'm going to start being a bitch out in public more often, so I can reserve some of my nice self for the people who have to spend the most time with me. I know you're overjoyed at the prospect of my bitchiness, seeing as I've been so sedate and cheerful thus far. (*grin*)

It's late, I'm either going to try and get some sleep, or play more video games... ah hell, who am I kidding... Wish me luck, maybe my cow will get her crossbow this morning...

Cheers

Seventh

Just haven't posted in a while, so I thought I'd babble. Things and treatment just keep going. I'm hoping I've been feeling better but I don't trust myself anymore - I'm stubborn and tend to feel however I want to feel. I have a scan in a few weeks so I'll wait to have the hard data before I decide that this chemo might be slowing things down. At least my bronchitis is finally going away.

The Pride Festival is this weekend and I'm getting anxious to get out and see friends I usually only meet up with this time of year. Yes, "that festival" for "those people" - but I promise we don't bite unless you ask nicely first, and it isn't contagious. The parade is Sunday the 8th at 10 AM. The festival is after that (parade is free, festival is $5). The parade is a lot of fun and usually really popular with kids because of all the rainbows and noise and candy and necklaces thrown from the floats and marchers. The festival is a great fair-like atmosphere with the usual mix of food, merchandise, and informational booths. I think they're going to have three stages again this year so you can find entertainment to suit your tastes all day long. There's also been a kid area with crafts, entertainment, etc.. Anyway, I'll be there so let me know if you want to meet up or tag along with me (I'll keep you safe from "those people" I swear lol). Here's the website if you want more info http://utahpridecenter.org/utahpride/

Cheers

Sixth

Chemo just continues on as before. I completed the first month's cycle and had my first of 3 treatments for this month today. I really don't like this chemo but will give it another chance as I've been fighting bronchitis for the last 2 1/2 weeks and that probably made me feel a lot worse than if I had only had the chemo. In fact, if you called me and I never called you back, I apologize. I totally lost my voice for a good week or so.

I'll have a scan in about 2 months to check and see if the cancer's growth is slowing. The doc says that most people can tolerate this drug for 8-12 months, but because of all my previous chemo and low blood counts, he'd expect to give me this drug for 6-8 months. After that (if it works and is still working) we can play with the dosage and frequency to keep me on it.

As you may or may not know, my bro-in-law Tom is working and living in San Francisco. My sister Cori flies out several times a month to visit, and last weekend she took me and Sandra with her. They have an apartment with an amazing view of the bay and bay bridge. We couldn't have asked for better weather as we wandered up and down the piers, and checked out the Castro district. Cori and Tom treated us to an awesome show at Teatro ZinZanni http://love.zinzanni.org/ It's a wonderful mix of humor, acrobats, dancing, juggling, singing, and any other entertainment you could name - and in between acts they serve you a scruptious 5-course meal (having the servers dressed in Parisian turn of the century corsets is not a bad thing either). Tom introduced us to Captain Darrel, a fisherman who does bay tours when fishing is slow, and we went out on the water just as the sun was setting behind the Golden Gate bridge. Getting away from here for a couple days was just what we needed and I can't thank Cori and Tom enough. Even though it might take me the rest of this week to recover from it lol.

Cheers

Fifth

So the bad news is my latest scan results show that the cancer has grown/advanced. The chemo drug I've been on doesn't appear to be doing much if anything. Some spots haven't had any growth, but most have grown and/or are very active, and I have three new little spots in my lungs (woot! ding stage IV!). The good news is that there is another drug they can try.

The new drug is Taxotere. The main drawback to it is that it's related to a drug I've had before - Taxol. Cancer can develop immunities to a particular drug, and the immunity usually includes all drugs in that family.

They'll start me off on the same schedule I'm on now - once a week for three weeks, a week off, repeat. That schedule may need to be adjusted as my blood counts continue to go down. The side effects shouldn't be any different than what they are now but I'll lose the rest of my hair faster.

The thing I'm not looking forward to is I have to take a bunch of steroids on the day before the treatment (not the muscle-building kind, unfortunately). A lot of people have allergic reactions to the matrix that this chemo drug is mixed in and the steroid prevents/lessens the reaction. This steroid (I've had it before) makes me hyper and keeps me up all night. Being hyper and severely anemic is not a fun combination. You're all jazzed up and want to clean the house or something, but can't seem to get off the couch.

I'm still doing okay. Our spirits are a little lower around here after getting the test results, but that drug only had a one in five chance (at best) of working, so it's not unexpected. Work continues to be really good to me, Sandra watches out for me at home, and I get to go out and play every once in a while. Everybody's love and support continues to be appreciated much more than I can say.

I de-winterized my bike so I guess that's why it snowed here today. Sorry. But I should soon be out vroommin around town! And that's always a good day.

Cheers

Fourth

Anybody feel like doing something for me? Go donate blood. It's not just for car accident victims or red cross relief efforts anymore.

I get to have a blood infusion tomorrow. My crit is 23-24, which means I'm down about 3 and a half pints of blood (red cells). Most of you know I've gotten infusions during past chemos as well.

I was suprised to learn all the other uses for donated blood - I'd really only thought it was used for emergencies or surgery. I've met a lot of people who are there getting blood for a lot of different reasons.

In cancer's case, chemo kills blood cells because it targets fast-growing cells. The doctors won't give chemo to patients with low blood levels, so blood is infused to bump the numbers up. Chemo can then be given on it's regular schedule, which is very important as it increases the chemo's effectiveness in the patient. It's also such a boost to my energy level for about 5 days after I get the blood - try to imagine how tired you'd be if someone siphoned off about half of your blood.

So I'd appreciate it if you'd participate in your local office, church, etc. blood drives when you can. Or here's a link to the Utah donor registry which lists places you can go to donate: http://www.yesutah.org/donations/blood.php

Thanks much.

Cheers

Third

I'm bald again. I'd bleached and dyed my hair blue over the weekend hoping it would last a couple of weeks. But the hair was thinning more today, and the itch that goes along with the hair falling out was really bugging me so I shaved off what was left.

My head is really white. Somebody fly me to the Caribbean so I can get it tan again!

Cheers

Second

Had my third chemo treatment yesterday so now I get next week off. Woohoo! I still have to go in to get blood drawn tho, that bunch of vampires. I think they've got enough of me now to start another person. Maybe she could go out in the world and make me some money lol.

It's been okay so far. Almost no nausea, but some lack of appetite, and my legs have been all twitchy and spasms. My hair might be thinning out so I may be bald in the coming cycle. And my immune system has taken a real hit this last time so I might have to break out the masks if I'm around you sickos =) The fatigue comes and goes, but it isn't too bad, and that will just continue through the treatment.

My immune system should rally - it's a common thing with this drug to drop you really low the first cycle but then build back up. They said the leg thing is uncommon but will go away soon too - I'm lucky, I guess at higher doses some people react badly enough they can't walk for a day or two. I'm always curious and interested in just what these drugs do and how they do it, but I'm glad they don't list the really uncommon reactions, or they'd never get me back in that chair.

I heard an extremely good joke at the doc's office yesterday. I wish I could remember it. Just imagine I told it to you, I guess. You'll really laugh.

Cheers

P.S. Happy Valentine's Day

First Post

So I started chemo again yesterday. I feel okay today - just tired and a little sick, but no worse than I've been feeling lately. The drug is called Topotecan, which I call the fruitloop drug because for some reason I can't say it and the last part kind of sounds like "toucan". They also gave me Dexamethosone to combat the immediate nausea.

This was by far the easiest chemo I've had. I was in the chair for less than 45 minutes, where in the past, with all the anti-everything drugs they had to give me, and the amount of chemo they gave me, I was usually there for about 5 hours. And they didn't have to give me anything like Benedryl, so I didn't spend the next three hours loopy and asleep.

I started chemo because I have more lumps growing in the area where I just had surgery, and most of the lymph nodes below my rib cage now show growth activity. Pretty fast growth, actually, as scary as that is. There's been no spread to bone or guts, which I'd expected owing to my recent hip aches and bouts of nausea. The aches and nausea are most likely caused by joints putting pressure on the growing nodes, and nodes irritating my stomach or guts. I also have some semi-permanent swelling in my legs because the nodes that would move the fluid up to my torso are damaged.

A lot of people have asked me what lymph nodes are. My simple understanding of it is that lymph nodes are a system of very small "pumps" that line the bigger blood vessels to help the heart move fluids through the body. Unfortunately, they are all connected, so once cancer is in one of them, cancer could be in any of them, although it does tend to spread to the closest first. There is no research that supports the surgical removal of known affected lymph nodes to stop the spread of the cancer.

Cheers