Thirty-two

Been so busy being a new auntie again I forgot to post it here! Thor is here! He arrived the evening of the 20th at 8 lbs 6 oz and 20 inches long. Adorable and healthy in every way. His mom's doing very well, and dad made it through the delivery without passing out, but saw some things that will haunt him.

I'm enthralled. As much as I love my neices, I didn't think there'd be room for another one, but I guess that's one of the joys of being human - you can always find more to love.

The pic with me, he's about 2 hours old, the other he's 4 days old. The helmet was provided by Cori's coworker Miki. Boy-God O'Thunder! He's a good baby though. Not much of a fusser (yet, lol knock on wood). And his dog Lumpy is his biggest fan. It's very cute to see the giant german shephard swipe a lick at Thor's head when he passes by, or to see how agitated Lumpy gets when Thor squeaks or fusses. Lumpy comes to get you and won't leave you alone until Thor settles lol.

Well, back to my boy.

Cheers

P.S. Cancer stuff is about the same. I've gained some (mostly water and soft tissue) weight from my favorite pill Dex. I'm still going, but noticing I'm slowing down a little and maybe sleeping more. The wound won't ever really heal over, but the tissue is healing up a bit and it's not as big a pain/mess as it was. I've still got lots of great people taking care of me.

Continuing to climb out of the pit I was in - I'm sorry I was such a shit for so long. Thanks for hanging around.

Cheers and Love

Thirty-one

Howdy

So I don't know if it's being totally off chemo, or being on this stupid steroid to help with swelling and energy, or if it's that the doc gave me some speed (prescription) that I've been experimenting with...

But I seem to be back to mostly myself. Sorry, I hadn't realized how pissy and dark I'd gotten. Don't get me wrong, I'm still pissed and not happy with this whole situation, but it appears I'm not making everyone around me miserable anymore, and things are encouraged to be fun and happy again.

Things are still progressing, I'm still on hospice, but I'm feeling pretty good and I've been able to get out and about for some fun stuff. The nurses still only check on me once a week and haven't made any signs that they need to come see me more often. I even gained a few pounds back so I don't look like a Boingo caricature. Ooh ooh and since my blood isn't being kamakazied every week, my counts are up and for the first time in probably 3 years, I can get warm.

Yes, some of you will say, "You're still terminal, you're just shittin rainbows." Yes to the first, and frankly, yes to the second because I generally get up in the middle of the night with a low-blood-sugar crash and have a bowl or two of Lucky Charms til I stop shaking. TMI? Hehe.

Well, whether it's the new drugs, or lack of old drugs, or an attitude revamp on my part, or the combination - I'm okay. I hope y'all are doing well and enjoying your summer. I just wish we'd had a spring to enjoy - crazy weather, huh?

Cheers and Love

P.S. I probably won't blog much here (like I was a regular anyway, right?) because I've been sucked in by Facebook and make my random comments there. I think you can view my pages without being on my friend list, just search Casey Jo Givan (salt lake network) or add me if you're there too.

Thirty

Hey there.

Things are going fairly well right now. My hospice nurse visits once a week to check up on me. I'm on a long-acting pain killer now, which has made a big difference because the pain baseline doesn't dip up and down all the time - I haven't had any of my fun episodes where the pain gets away from me, and I start puking so I can't keep any anti-nausea or pain-killers down so I just spiral down into pain and dehydration until I go to the ER two days later and get fixed up. By the way, I don't have to go to the ER anymore if that happens. The hospice will come out and give me shots and stuff to get me back on track, no questions asked, and especially no 2 or 3 hour wait as they try to figure out if I'm just drug seeking.

I'm sleeping a bit more, but that's to be expected. And they prescribed me some speed for if I need to be awake and obnoxious. I'm also finally eating mostly normally again, with all the chemo out of my system and the pain under control. I'm still losing weight just not as fast. For those of you who haven't seen me in a while - last June I was about at my heaviest at 254 lbs, and my last weigh-in I'm at 168 lbs. Even though I've been a frustrated dieter and active and eating healthy most my life, I don't think I've weighed this little since high school. Not a diet plan I'd recommend. Cancer sucks.

I'm still ambulatory and even take the dog for short walks. Long-day events are starting to require a wheelchair, as the lower tumors have spread into my groin muscles and it irritates the absolute shit out of them if I walk fast or a lot. It ends up feeling like I have a dual, heavy groin sprain. I had my first trip through the grocery store in one of those disable carts last week - it was embarrassing (kind of, nice to have it and not get so tired, but embarrassing).

Just rays of sunshine today, huh? Sorry but people seem to want to know this stuff but don't want to ask. My wound is still open and draining, but seems stable. That's another great thing about hospice, I don't have to drag myself up to LDS wound clinic once a week to get it checked anymore. I really like the peeps at the wound clinic, it's just far away, and tires me out, and takes up half a day of somebody's time to take me.

We're still waiting on the day when baby Thor is born - he's not due until the middle of July tho. My sister is worried because he apparently is his daddy's boy and she'll have to give birth to a big cow-headed baby. He's measuring about a week ahead in growth overall, but 4 weeks ahead with his head. But the cutest thing is when they did the last scan, in profile you could see he had lots of hair and it was all smeared up into a mohawk.

Cheers

Twenty-nine

Grrrr... let me try this again. I think this one will go better.

I'm the oldest, or, I'm younger than you. I'm supposed to look after you. And you've already been through this with my mom, you shouldn't have to take care of another one. I worry about you, and having you worry about me is a nice little circular trap in my brain that won't stop spinning.

I'm not spurning YOUR help, or even ALL help, I just know things will get worse to when I will definitely need help. I more than appreciate everything you're doing for me, but I don't want to burn you out on doing things for me, because Sandra and the rest of my family will need your help and support down the road and I need you to look out for them.

I'm pretty independent, so while I can do things for myself, and maybe even for others, I would really like to.

I know you care for me, and I'm sorry I get frustrated when you ask even a simple, "how are you?". But really, imagine your left toe hurts, and 40+ people ask you about it all day, every day, for weeks, and months, and even years now. Casey Jo does not equal cancer. I am still about other things and even though your sentiment touches me, I think about my illness almost all the time so having everyone discuss it with me all the time is just exhausting.

I'm trying to control the flash of fangs and temper, and snarky comments like, "yeah so I'm not handling this well, hmmm, next time you're terminally ill, I'll take notes as you show me the proper way to behave." I hope you'll forgive me if the fangs do show, and I hope you know the ire/anger/pissed is not directed at YOU - you just were an innocent bystander when my bomb of frustration at my situation went off.

I hope this gives you a better understanding of where I'm coming from. Things just come to a head and, oh look, here's this blog thing I can rant on. I think I'm just ranting into the void of the interwebs, but I forget some of you are out there reading.

A friend recently wrote in his blog, about how he can get positive comments from people who love him all day and blow them off, but one negative comment from a random stranger and he lets it ruin his week. I think we are all like that. We need to concentrate on what comes from the people we love, especially the good things, and learn to blow off the idiots.

Well, it looks like our time is up for this session. Why don't you work on that for next week, eh?

lol

Cheers and Love

Twenty-eight

Okay, so this might be a bummer of a post. Sorry.

I switched to hospice to provide my care. The treatment docs really can't do anything for me any longer so I saw a pain management doctor at Utah Cancer Specialists and he hooked me up with Pinnacle Hospice. For now, they're only coming in about once a week to check on me, but I can call and have someone come out at anytime, and can increase the frequency of visits when needed. They told me it's all about me now, and keeping me happy and comfortable, so I guess I'll have to find my inner diva and let her out to roam. Mwahahahaha.

On a side note: if you ever have to get hospice, research the company carefully. Apparently there's about 50 hospices in Utah, but only 4 or 5 that my doctors would recommend. They had some definite opinions on the mediocre and outright bad ones.

But hospice is an incredible thing. It's still a newish concept so I know most of you can think of a loved one who, in their last weeks, being rushed back and forth to the hospital for care or help with pain control, and either spending their last hours in an impersonal hospital room or getting kicked out because insurance or money ran out and the patient has to go somewhere with absolutely no support of any kind.

We're impressed with the people we've met from Pinnacle so far. Of course, I'm always impressed by any kind of people who spend their lives caring for others - I don't know how they do it, especially the ones who are really good at it and feel blessed that this was their calling.

For now, I'm still just me, gettin' along day by day. I had a bit of good weather after the chemo cleared out of my system. As for progression - the docs think the tumors will progress but not invade further organs - the cancer will progress to a point that my stubborness will knuckle under to the burden that this fast-growing and energy-stealing shit puts on my body.

During the good weather we gave my sister and baby Thor a shower. It was fun and she got lots of good stuff. You never realize just how big the family's gotten until you have to send out invites to 60-ish people. Jeez. And that was just my side, not her husband's. She was excited about the wide range of clothes and things she received - she was worried she'd have to return an overload of newborn stuff.

Okay, and now I get to offend people: (unfortunately, I don't think the peeps that need to see this read this blog, but I need to vent a bit)

Quit rolling your eyes at Sandra when I get up to get a drink, or when I jump up to get a fork for maybe my niece or something. You don't know all that she does for me at home and everywhere she carts me around to so don't try to judge her by what you see me do for myself. She has learned that if I want to do it, and I can do it, I'm going to. Most of you probably don't know what a stubborn bitch I can be, because I'm usually pretty easy-going. Well, Sandra has learned (sorry Sandra, lol) and she knows I generally recognize my limits and stay within in them these days, so it's not worth the stress of arguing with me. =P so there

Please don't give me the long, sad-eyed, searching look as you ask me how I am. I'm still pissed-off about this whole predicament I'm in, but for the most part I've made peace with it and having a couple hundred different people trying to be my personal counselor and shoulder-to-cry-on is getting frustrating. I wish I could make you believe me, just how much your reaching out to me is appreciated. It really is. It really, really is. Just put my frustration down to my own flaws, I guess, and accept it when I reply "fine" or "hangin in there" because it's just a normal day for me. I'm going to start replying "oh I woke up today, so I'll try to die by tomorrow, k?" and then laughing maniacally as you slowly back away.

Okay, I won't really, but it does flicker through my head occassionally.

I know I get frustrated and hand out lots of don'ts, so what can you do? I know a lot of you don't have any idea what to do. Just still be my friend. Yeah I can't go hiking with you, or to Lagoon or something, but you could tell me about the fabulous time you had when you went, or tell me about the atrocious time you had and I can sypathize with you. Or continue just sending me emails that made you laugh or touched your heart.

I guess what it boils down to is, don't try to overdo it because I'm sick, but don't cut me off because you don't know what to do because I'm sick. Just share with me about you're life what you're comfortable with or want to share, and respect my boundries the same way. One of the best things I've seen written by a fellow patient reads, "Don't assume I want to ignore my illness, but don't assume I need to wallow in it either, please."

I love you all more than you know, mostly because you can't read my mind and all you see is my frustration with this cancer. I do take to heart all the sentiment, and offers for help, and support, and everything else. I put a big sparkling smiley face under your name for each one and send it off to whatever good force you believe in and hope and pray that you get your reward for it.

So now that I've ticked off half of you, and made the other half cry, I'm going to call it a night. I'm threatening that I might erase this post because of the venting and because I don't usually put my feelings out there like this and I'm a little scared of what I shared. Again, =P so there.

Cheers

P.S. Thank you for the good energy you sent my brother's way. My niece is now papered and all and officially living with her daddy, her sister, and her (good) mom. The psycho ex had a moment when taking care of her daughter was inconvenient, so she got a burr up her butt and hurridly signed the papers and handed my niece over. And complained on the way out that now she was late for something fun because of the "inconvenience" of dealing with my niece's future. Sigh. I just don't understand people. Oh well, it's all for the good, and we are all very happy on this side of the line. =D

Twenty-seven

No more chemo!

I never thought I'd say this, but for now that's actually a bad thing. The scans I had a few days ago revealed that all my spots are active and most have grown, so the chemo has stopped being effective.

Where do I go from here? We'll still be keeping an eye out for experimental chemos, and if I qualify for the studies. I don't know what my decision would be if we find one - very tired of and beat up from side effects vs. the minute chance it might help me. Or that it could help someone else down the road when the studies are over. I'll fall off that bridge when I come to it.

I'm alright for now - bummed, certainly, because it's a definite downer when you hear bad news that you knew already, but it sucks to finally hear it out loud. I should actually improve a little bit in the next couple weeks, in terms of fatigue and energy, now that the chemo's not berserking my blood on a weekly basis. Everybody's still taking good care of me, even though I can make my own PBnJ's, thankyouverymuch. I feel like a 3-year-old sometimes, "I can do it myself!" but I appreciate more than you can ever know, the care and concern I receive.

For those who want details of what's going to happen - I don't have them for you. We'll see in a few weeks, or hopefully months, what direction the cancer will progress in.

In better news, my little unborn nephew is growing and developing right on schedule! His name is Thor, which I love. I hope he looks like "Thor" when he makes his appearance. And please send some good thoughts my brother's way - he had my neice on trial full custody for 6 months, with his ex's blessing cuz she didn't want to be tied down to a kid. But when the ex got the court papers detailing the facts that she would no longer receive child support, and would have to actually be responsible for half of my neice's day care, she freaked and took my neice. She didn't leave the state or anything, so they can't count it as kidnapping, only that she "isn't fulfilling the terms of the custody agreement". That goes to court here soon, meanwhile it's been about 6 weeks she's had my neice and who knows what coaching the ex has done against my brother. It's breaking my heart. I can't imagine what is wrong with people that she can use her 5-year-old daughter like this.

Well, I guess that paragraph didn't end as better news... let's see... Oh, now that I'm not on chemo I can get tattoo'd again! I have so many plans for artwork, I don't even know where to begin.

Cheers

Twenty-six

Yeah so it's been a while since I've posted. There just isn't much going on.

I'm still on the chemo Gemzar. The cancer appears to be growing, but very slowly, so the drugs are helping at the moment. It's playing hell with my blood counts tho and I have to drink a ton of fluids to keep my blood pressure up. Unfortunately, they told me beer and whisky do not count as fluids in this case.

Wound care continues as before. The docs and nurses at the wound clinic think it won't close up/heal over while the tumor is there behind putting pressure on it. I saw another surgeon for a second opinion but no dice. The tumor is down into muscle so it's inoperable, and removing some of the tumor or some of the tissue isn't good because the body will know something's been removed and will step up efforts to regrow things there - I'd have a bigger mess than I do now.

The trip to Florida was great. We didn't see the shuttle launch, but the space center is amazing. We also spent a couple of days at Disneyworld. Sandra says she doesn't have to excercise for the rest of the year now - she got quite a workout pushing me around the parks in my wheelchair so I could save my energy for the fun stuff.

My sister's baby is a boy! He'll arrive sometime in July. I got to go to the ultrasound with her and her husband and it was very cool. He's big and healthy and developing right on track. He kept clutching and burying his head in the placenta during the ultrasound, just like a shy little kid might do with a blanket - it was cute.

Cheers

Twenty-five

Well, good thing I wasn't thinking about it and getting excited - NASA put the launch off for at least a week while they check a fuel valve. We're still going to Florida next week though. It'll be good to get away, even if things won't work out the way I'd hoped. We'll probably do a day tour of the Kennedy Space Center, and use the extra couple days we'd planned on for delays to see Disneyworld.

Cheers

Twenty-four

Today is my anniversary. I was diagnosed 4 years ago when I was having a lot of pain and I went in for surgery for the doc to remove what he thought would be a large ovarian cyst. It turned out the ovary was a 14cm tumor and it's been treatment and cancer, cancer and treatment ever since.

Four years is a long time. It's kind of a bitter-sweet anniversary. I've had 4 more years than if the tumor had just exploded and killed me in the first place, but it's also been 4 years of cancer and all the treatment and pain and loss of function that's gone along with it. Can't say I'm regretting the 4 extra years though.

I'm still going to Florida next week to see the launch. I try not to think about it - I get too excited. It looks like it'll be the last shuttle launch for a while - they'll probably make massive budget cuts to the space program to try and help with the recession.

Cheers

P.S. Happy Birthday to my little bro Tommy!

Twenty-three

So... when I said Spacey Casey was accepting donations to be produced in 3D, I never imagined...

Spacey Casey gets to go to Cape Canaveral to see the Space Shuttle STS-119/Discovery launch on February 12th. I get to see it from inside the compound in a VIP area that is the closest civilians are allowed to get to the launch (6 miles away, which sounds far but keep in mind everything involved is HUGE and the places most sightseers go are about 10 miles away).

I'm so excited, about all I want to do is hold onto stuff and jump up and down and squeal. Must be left over from the little girl in me who wanted to be an astronaut for as long as she can remember. Every time I close my eyes I can hear the flowing roar I hear on TV, and imagine the rumble of all that fire lifting the shuttle. This has mostly been #1 on my "bucket list" forever but have never gotten around to it.

Spacey Casey owes it all to the Queen of Kahn-doh 48, my love Sandra. She found a budget way to do it and arranged the finances. She's very much too good to me.

Cancer and wound stuff continues as before. It shouldn't be too hard to travel since it will all be planes, shuttles, and possibly a wheel chair. Half my bag will be wound care shit though. The wounds continue to get a teeny bit better the every couple of weeks they're evaluated. I'm getting used to taking care of them, but what's getting more and more on my nerves is the smell. A mix of sweet BO and old blood. It's disgusting. Luckily, most people can't smell it because it isn't strong enough, but I'm only a foot north of it ALL THE TIME and I definitely can. Nothing masks it.

Enough whining. I get to go to a launch! /squeal

Cheers

Twenty-second

Woot! Two pints of energy coming my way tomorrow. My crit is 26, I'm down a few pints of blood and anemic, so I go in tomorrow for a fillup. I want to thank all of you who donate blood, for whatever reason you do it.

The little brother hole is looking better, not draining as much and I'm feeling a little better having that junk out of my system. It turns out that some of it was infection, but a common bacteria and I'm now on antibiotics that will clean it up quickly.

I had chemo again yesterday (the Gemzar). We decided to give this new chemo another month even if the cancer appears to still be growing. The doc explained how, if you can picture it on a graph, the cancer continues to grow over time, and the chemo at this low dose may take a little while to overtake it. A higher dose would not be helpful - my bone marrow is so beat up from all my previous treatments that a higher dose would totally tank my blood counts and put me in the hospital. We try to avoid that =P I've seen enough of the hospitals, thank you.

Cheers

P.S. Spoiler Alert! Well, more like bummer alert. I don't know what's going to happen if this chemo has no effect. There's pretty much nothing in the line up so I may be done. Any other chemo tested on this type of cancer has had little or no effect. And the ones that have had little effect - the people on placebo treatment had the same rate of "effect" so if you know anything about scientific testing, that negates the little effect. Still have our eyes open for experimental stuff and all that, but just thought I'd give a heads up.

Twenty-first

Really nothing new to report. Oh wait, yes there is. My wound has a baby brother. Dealing with weird fluids bursting from my skin on a regular basis has apparently made me blase about the whole thing.

This new hole is a couple of centimeters to the left of the big sore. The big one is a result of the tumor pushing up through the skin, this little one just broke open out of smooth skin - no discoloration or other warning at all.

It's only about half a centimeter in diameter, and doesn't have any tissue poking up through it. It just burst and drained lots of fluid and necrotic tissue (kind of like the one in Oct 07 but on a smaller scale). It doesn't seem to have any physical connection to the big one - there's a definite division between the two on the inside.

I went to the wound clinic and they tested for infection, cleaned it, and now I have two holes to pack with gauze every day. It also continues to drain so it has to be kept open. Yay! I'm glad my body provides me with these little projects to keep me busy everyday.

On a much happier note, my sister's all knocked up and I will be an aunt again sometime in July. She wants a boy over the emotional trauma of raising a girl. Her husband wants a girl because he thinks they are sweet and quiet and easy to deal with. They'll try and find out the gender in a couple of months. One of the many exciting things about this pregnancy is that due to the miracle of modern medicine, this little parasite growing in my sister has tested negative for the breast cancer gene that runs in some members of my family.

Some of you know we lost my mom to breast cancer, and her mom, and some great-aunts and other relatives, and that my aunt is a survivor. Before you ask, no, my cancer's not related - I've been tested for all known (breast cancer) mutations and I don't have them. I just had to be different. I don't really understand that, you all know how much I live for conformity. ;P

Cheers