Nor'Easter.....Snor'Easter

The beach is beautiful despite the brewing Low offshore that could become the first nor'easter of the year. just look for yourself. bring it on mother nature, just give me some sun and sand and i'll brave the 30mph winds with 45mph gusts! :) enjoy the pics!

Cleared and ready for vaca

dr. doom wanted to see me a week after my last drain...today was the day. everything went as usual...the plan is the same, to stay on the 25mg sutent for now and manage the toxicity vs. effectiveness. maybe a 6 or 7 week on 1 week off schedule and maybe increase the dose at some point....basically its trial and error at this point....see what i can handle and see how long it is going to be effective. he told me that since i have been on the drug for so long and i know my body and how it reacts and all that i can pretty much push myself and/or manage the cycles myself....to simply call or email them when i need a break so they know what i am taking or not taking. i will still continue to have my check up appts. every 3 weeks, but he decided to empower me a little this time with my treatment schedule. he also said that if during my breaks i continue to build up fluid and need to be drained, then of course we will do that.

speaking of being drained....so far so good. i seem to be maintaining from the drain last week. today i was 10lbs lighter than my last appt. (they weighed me before i was drained and they took approx. 9lbs of fluid off last week) so, i am maintaining and lost another lb. which could have just been water since i was a little dehydrated today.

i was also cleared to go on vacation next week...except dr. doom told me to get a big hat since my skin is going to be sensitive to sunlight and i will burn easily while on the sutent.

beautiful litchfield beach here i come!!!

Na Na Na Na Na Na Na Na BATDOG!!!!!!!

Episode 2: K9 Fashion faux-paw.

POW! KABAM!!!! SMACK!

ok, usually i make fun of people that dress up their dogs....well, now i have to. vets orders. the damn cone collar is irritating his chin and causing him to scratch the hell out of it and lose his hair, so he told me to not put the collar on him anymore and put him in long sleeve t-shirts. so, i decided that kids pajamas would probably fit him best. i went to target and got him batman pjs. the logo has a motion detector in it and whenever he moves, it lights up. too funny. the damn pjs came with a cape and everything. looks like he's all ready for halloween!

Better than lipo...

well, i had my 3 week check up yesterday(was supposed to be today but they moved it up so i could get an appt to be drained sooner). i had the paracentesis appt afterwards and they pulled 4ltrs off again...approx. 9lbs. woohoo! shorter recovery and faster results than lipo! :) the pattern that seems to be developing is when i take a break from the sutent, my belly begins to fill with fluid...when i start back on the sutent, it can't fight the fluid that is already there and it continues to build up. BUT, if i am drained while i am already on the sutent, it seems to be able to maintain and even reduce the fluid more. so, there is a sort of "cap" as far as amount of fluid that the sutent has an effect on.

other than being drained yesterday, my check up went fine...no major side effects yet except for being in the potty a lot...that one always shows up first. my labs showed that my potassium was low and my calcium was low again. they are calling in a Rx for the potassium supplement and i am supposed to start back on the daily tums again. otherwise it is business as usual.

i am going on a beach trip. i can't wait for some nice relaxing beach time. HURRICANES BE GONE!!! i'll post some pics when i get back. its not for a couple weeks, but i am excited now! :)

tootles team beansaver!

Perfect Puppy Patient

it's official...my dog is a better patient than i am. he is doing great! no pain meds and he's running around as usual. i actually have half a mind to give him some benadryl or something to make him sleepy because he is not supposed to be running around!!!!

he's on some meds for the next few days and i have to change his bandage every other day. i'm also supposed to check it every day, but if you know anything about bandages and animals and the way you have to wrap the leg, you know that once you undo the thing, you have to do a new one cuz it will never go back on right. so, we'll see if i can manage to only change it every other day while checking it every day.

oh, doggie surgery is a crapload cheaper than i thought it would be. for 4 days in the kennel, teeth cleaning, 3 different types of meds, surgery, bandages, etc. etc. the grand total was $770. w00t! i thought for sure i was looking at a $1500 bill at least but nope...it was half that. not bad. he didn't need a cone collar either because he is a good boy and isn't messing with the bandage at all. yea!! what a good boy!

well, he didn't need the cone collar at first...now he does, thus the pic above. he's on the 3 strikes and your out plan. he gets to chill without the collar but if he gets caught licking his wound 3 times, the collar goes back on. so far he only has it on at night and a couple hours a day. he's still a good boy!!! :)

What a good boy!!!

My baby came through his surgery with flying colors. the tumor was approx. 1in and they had to cut into the surrounding tissue another cm or so to make sure that they got everything. he is all stitched up, but since this type of surgery tends to swell(so they tell me) and put too much pressure on the sutures, they had to make little incisions on the sides to relieve the tension. they told me it kind of looked like a potato with the little dimples. so, he is all stitched up and bandaged up. i will have to change the bandages for a couple days, but i am used to bandaging animals since i've been around horses for most of my life and have had to take care of several injured beasts. you'd be surprised what animals can get themselves into...sometimes fact is stranger than fiction. i once had to take care of a mare who managed to break her leg....changing the bandages on that was sure fun...insert sarcastic look here. she was a tad on the crazy side anyway...you could never turn your back on her cuz she might be rearing or hauling off and nailing you with her back leg when you turned back around. of course her mother thought she was an angel. ha!

anyway, i pick him up today. i have no idea what doggie surgery costs these days, but i'm sure it is pricey. i'll let you guys know the damage as i am sure you are curious. also, i'll be nursing him through his recovery over the next few days/weeks. my mom nurses me through recovery, now i am the doggie mom nursing my baby through recovery. don't know why i find that funny.

thanks for the finger, toes, arms and legs crossing for my pup! i will post a picture of him once i get him home....im sure he's going to look pitiful and have on one of those Elizabethan collars. hehe.

back to the usual topic....me.

i was off of sutent for 9 days...long enough for the side effects to subside...mostly. i didn't get full taste back in my mouth and my blisters on my fingers aren't quite gone, but my belly started to fill with fluid again. it was starting to get uncomfortable so i called and talked to my immunotherapy coordinator and she said to go back on the sutent to try and help the fluid build up. so, my break was short and i am back on the sutent. the runs came back right away, but the other side effects are slow to show as usual...thank goodness. this is the plan for a while at least. dr. doom wants to try to get me on a 5 or 6 week on 1 week off cycle with the 25mg dose since it seems to be working pretty well. i will keep the usual 3 week check ups. maybe he will think about switching to the 37.5mg dose again in the future, but for now im sticking with the 25mg. long term plan is to stay on the sutent until it doesn't work anymore then try something else. that's all the new info i have right now. we are in one big trial and error cycle...testing the limits of my body...how long i can stand taking the sutent...when do i need a break...how long can the break can be...how long will it continue to be effective. yadda yadda yadda...

You can't make this sh!t up....

before i get to the subject of the title of this post, i've got to give a shout out to my ECU Pirates for coming through at the last minute to whoop Va Tech's ass yesterday. WOOHOO!!!! i must admit, i did not have faith in my Pirates, but they restored that faith. I WILL NEVER DOUBT YOU AGAIN O FAVORITE COLLEGE O MINE!

second, i grew up near the Chesapeake bay....crab country. i miss a good crab cake damnit. the one thing they know how to do down south is mess up a crab dish. people....green peppers RUIN crab flavor. yuck! and, let me tell you, if you are at a restaurant that is 100miles or more from the Chesapeake bay, DO NOT BELIEVE IT when the menu says "Maryland Style Crab Cakes". they are lying. what you will get is a crab cake with too much filler, green peppers and stringy, nasty, tiny bits of crab meat...nowhere will you find true "lump crab" unless you are near the Chesapeake bay. so, i miss a good crab cake. yeah i know you can order them and have them shipped to you, but that's just not the same. so, here's another shout out to TRUE Chesapeake bay style Maryland crab cakes. YUMMY TO MY TUMMY!

this is my pup...when he was a pup....he will be 8 on halloween.

OK...on to the real meat of this post. pun intended. you can't make this shit up if you tried. i found out the other day that my dog, yes, my dog, has cancer. i took him to the kennel the other day which also happens to be his vet. they asked if i wanted them to look at anything and i told them to look at a couple skin tags that he has below his left elbow. he gets them all the time and i have had them looked at before and they always tell me that they are fine and i can leave them alone if they are not bothering him. well, i had them look at them this time because something told me to....i just had a feeling that they needed to look at them again. well, later that day, i get a call that they are recommending he have his teeth cleaned cuz he has a cracked tooth and that if i want, they can take off the skin tags while he is under for the teeth. they tell me that one of the skin tags is a little larger than the other and that it might require a couple stitches, but otherwise it should be straightforward. great...do it. she tells me that she will call the next day after he wakes up from everything and will let me know how it went.

so, the next day i get a call...his teeth cleaned up great, the cracked molar isn't bothering him so they want to leave it in for now and just keep an eye on it, the skin tags came off fine but the one that needed stitches became "angry" when he was in recovery and this is not normal. she took a tissue sample via a syringe and looked at it under the microscope and determined that the pathology was cancerous. WTF?! are you freaking kidding me?! now my dog has cancer. is there something in the water, something in my house? come on...my luck has got to change soon! she tells me that if i agree, another vet (one that knows me and my dog) can perform surgery sunday(today) to remove the entire tumor from his forearm. she says that this type of cancer has a good prognosis if the entire tumor can be removed. HELL YEAH REMOVE THE DAMN THING! ASAP! fix my baby! at least one of us can say we are in "remission".

i don't know exactly what type it is...i didn't catch all of the details she was telling me because i was in shock about my luck. i was thinking "what's next?". i am supposed to get a call with an update today after his surgery. i'll post what i find out. this time cross your fingers, toes, legs arms and eyes for my dog!

this is my pup now. what a sweetie!

Lovely new side effect...

opps! i forgot to mention why i am on a break from the sutent. i'm not one to quit, but damn, i just couldn't take it anymore....i needed a break. besides the usual side effects i experience, low white cells, low platelets, low hemoglobin, the runs, sore mouth, lack of appetite, sensitive fingers and weight loss....i was lucky enough to get a new one...blisters on the hands. yup, those nasty little bastards that i have read about finally came looking for me. mine aren't really best described as blisters tho...they are more like callouses or corns that just keep getting bigger and bigger and new ones appear daily. they itch like crazy and are painful when touched. i had a bunch on my right thumb and my middle finger. try picking things up when you are right handed....the locations were perfect for maximum annoyance! made it hard to play wii damnit!! :) thankfully, like all of my other side effects they subside over a week or so when i go off the sutent. they have shrunk considerably now and just feel like normal callouses...with a yellowish tint to them thanks to good ole sutent.

My ears were burnin'!!

Monday between 12 and 1 my ears were burnin'.....why you ask? well, because dr. doom was presenting my case during the monday conference because i had responded extremely well to the sutent....AGAIN! yippie! i had my scan on the same day as my check up appt. so the radiologist hadn't had a chance to go over them yet, but dr. doom looked at them with all of us and gave us his take on them. below is the play by play....

first, there was some fluid in the bottom of my left lung that had been there for some time, but he wasn't too worried about it...this time on the scan...it didn't show up at all...completely gone.

second, i had up to 50% reduction in cancerous tissue around several of my lymph nodes...GRRRREAAT!!

third, there were 3 lesions on my liver on the previous scan that were now gone...however, there was a new spot that dr. doom wasn't sure about and needed to consult with the radiologist about.

fourth, and yes, i saved the best for last...the cancerous tissue in and around my kidney had also been reduced significantly. (i don't have a percentage for that one yet) dr. doom was very pleased with my continued response to sutent and presented my case on monday. he loves me cuz im a good success story for him so far...and i love it because it motivates him even more to get me into remission! that is a long way off and a tough road that i will have to travel, but that is the ultimate goal of course.

well, that's the news that fit to print folks. i am going to Va Beach over labor day weekend for a much needed vacation away from hospitals and dr.'s and the C word. i am most likely starting back on the sutent when i get back from vacation....fun, fun, fun. hopefully the side effects will be delayed for a couple weeks this time....that would be wonderful.

thanks team bean saver! hope your summers have been great and your vacations have been restful. i'll update when/if i learn more details about my scans.

Happy Anniversary Lefty!

well, maybe not the happiest of anniversaries, but Aug. 22nd marks the day that i found out about my cancer and the day that my life changed forever. its been a long 12 months and i have many more months of fighting to go, but 12 months is 4x longer than my dr.'s lowest life expectancy estimate. so, eat your heart out dr. doom. CDRCC aint getting rid of me that easily!

Wed. Aug. 20th is my next scan to see what lefty's been up to...sneaky little bastard that he is. the last scan was back in May and it was simply to get a benchmark after surgery. i was not back on any meds at that point. on scan day i will have been on a full cycle of 37.5mg(4wks) and a constant dose of 25mg for 7 weeks. hopefully it is still doing something in there! the side effects are kicking my butt so it better be kicking some cancer butt in addition to mine.

i'll update the blog as soon as i can once i get some news about my scans. one thing i can go ahead and report is that the fluid is not building up nearly as fast. in fact, it is hard to tell if it is building up at all or if some days i just have gas bloating my belly. :)

cross your fingers, toes, legs, arms for scan day team bean saver! thanks!

Drink your milk!

quick update. they got my labs back and my thyroid looks good, but i was low in calcium. so, i have to chew 2 tums twice a day for the next 3 weeks until my next check up. i was surprised that calcium was the only thing that was low since i am poopin' everything out so fast...i thought for sure i would be deficient in more minerals than that. usually my potassium and my magnesium are low, thankfully they are fine.

hopefully this will be the last post for a couple weeks...until my next check up. remember, no news is good news right now. holding steady with crappy side effects..that's my story and im stickin' to it! :P

on another note...i got a wii finally!! w00t! challengers...any challengers? who wants to kick the cancer patients' ass in some Kung Fu Panda!?

Steady as she goes...

2wk check went as usual. the plan now is to not rock the boat...if it aint broke, don't fix it...pick your favorite cliché. i am going to stay on the 25mg constant dose of sutent because it seems to be maintaining the amount of fluid in my belly...maybe even reducing it slightly. so, i am going to stay on this treatment for the next 3 weeks until my next set of scans. if the side effects get to me too much, dr. doom said i could take a week off or so and then start back...to just call in and let them know.

so, holding steady i am. side effects are the same. sore mouth, very tired, constantly in the bathroom, hair growing in white and sensitive finger tips. i am going to start taking naps. i just get too cranky because i am so tired so a nap is what i am prescribing myself. they tested my thyroid today to see if they need to adjust the dose of synthroid since this may still be contributing to my fatigue, but i haven't heard the results yet.

anyway, that's about it for now. oh! thanks to everyone for the birthday wishes! lucky 32!

Best laid plans....

well, the triple threat plan of attack didn't work. i continued to build up fluid in my belly and finally, during my last check up on july 15th, dr. doom and i agreed to schedule a pin cushion appointment while on the 25mg dose to see if once drained the sutent could "maintain" the current rate of fluid buildup. it was unable to reduce the fluid already there AND stop additional fluid production as the 37.5mg dose had been able to do previously.

so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.

5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.

thanks to everyone for their well wishes! rock on wit yo bad selves!

oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!

the triple threat...fluid be gone!!

ok...open mouth, insert foot. in my last post i was complaining about the side effects kicking my butt late in the cycle and said "put a fork in me cuz i am done with this cycle". well, that'll teach me....one week into my two week break, my belly was swelling back up to the point where it was really noticeable. damn, i was just starting to be able to taste again!! i went in to see dr. doom and he agreed there was fluid building back up, but didn't want to schedule me to be drained.

attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and he noted that and said they would monitor the toxicity closely.

my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.

diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.

with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!