Okay...I guess we are changing up the regiment after all...new cocktail...Doxil. I was suppose to have chemo today but the key to withstanding this drug is to stay cool...since "cool" is my middle name...I thought...no problem. Then I hear you have to keep your "body" cool...stay out of the heat and sun...take cool showers...soak feet often in cool water...all kinds of crap that doesn't gel well with summer. Not really cool when you plan to go on a float trip for the weekend. Zoey and I along with a whole group of friends have been looking forward to this trip for some time now. I don't plan on disappointing anyone including myself but especially my Zoey...we've been through to much lately...so once again, we postponed chemo until next week.
Doxil will be given only once a month...which is a bonus...but it can cause some funky side effects...the main one being a skin reaction called "Hand - Foot Syndrome". Sores and blisters that usually occur in the palms of the hands and soles of the feet...it can also occur on parts of the body where your clothes may be tight or where friction, pressure, rubbing and sweating occur...which is everywhere on me! Also, can cause sores in the mouth, fatigue and other fun side effects...but hair loss and nausea are not that common...which is another plus in my book.
I saw my Pulmonary Dr. today...he thought everything looked good...he feels that the procedure was successful but still too early to tell for sure...it could be a couple more months before I'm 100% healed from this lovely lung surgery. As of the beginning of this week, I do feel better...my breathing is good...still some shortness here and there but I can at least get around without sucking wind. I don't feel like I have fluid in my lung right now and my weight is down which are all good signs.
I plan on going back to work next week...I miss the crew...and I'm feeling up to it again. I just have to play it one day at a time...my positivity is coming back some...it helps to feel somewhat normal again...it's been so long I'm not sure if I'm even close to normal but I'll take where I'm at in this moment and run with it...(or walk very slowly).
Thursday, August 28, 2008
Monday, August 25, 2008
Laughter is Truly the Best Medicine!
Antibotics are kicking in...I'm finally feeling better! Saturday night, I even went to a friends house for a get together with some girls from high school. I was sober but truly enjoyed watching 40+ year old girls at 2am trying to relive their old cheerleading days by doing cartwheels, round-offs, and "herkies"...(whatever those are). Luckily, I didn't have to drive anyone to the ER with broken bones.
The best part of the night was the laughter...my belly hurt...and it was great medicine for me...I'm very glad I went but the late night took a toll on me yesterday!
This week I have various doctors appointments...I was hoping to get my stitches out today but they were "too busy" for me...(supposedly) I get rid of them tomorrow morning. It's really ridiculous...I've had these stitches in for 26 days now...and the area still looks like crap. If they wouldn't have done such a shitty job stitching me up in the first place, I could have re-bonded with my bra weeks ago and been amongst the public again.
I also have an appointment with Dr. Yagan who is my Pulmonary Dr...the one I like...although he's been on my shit list for referring me to this shitty ass surgeon...he'll be getting an ear full about that crappy call. I'm hoping he'll be able to answer some questions for me...mainly, did this freakin' procedure work or not! As of today, my shortness of breath is not too bad. I ran some errands for the 1st time in ages...got along pretty well...just found myself sucking air a little bit here and there...not nearly as bad as it has been...so I'm keeping my hopes alive...which has been a feat in itself lately.
At this time we are still on for chemo this week...never thought I'd be excited about going to chemo...but I need my juice...scares me going so long without it. I just hope it doesn't kick my butt too hard because...(CALL ME CRAZY)...Zoey and I have plans to go on a float trip with a big group of friends this weekend. On second thought...don't call me crazy...my cell phone minute overage is killing me right now. Not to worry...we're staying at a motel...not in tents...and I actually will NOT be joining them on the river...I'll be the one left behind to read my book along the bank of the river waiting for their return.
The best part of the night was the laughter...my belly hurt...and it was great medicine for me...I'm very glad I went but the late night took a toll on me yesterday!
This week I have various doctors appointments...I was hoping to get my stitches out today but they were "too busy" for me...(supposedly) I get rid of them tomorrow morning. It's really ridiculous...I've had these stitches in for 26 days now...and the area still looks like crap. If they wouldn't have done such a shitty job stitching me up in the first place, I could have re-bonded with my bra weeks ago and been amongst the public again.
I also have an appointment with Dr. Yagan who is my Pulmonary Dr...the one I like...although he's been on my shit list for referring me to this shitty ass surgeon...he'll be getting an ear full about that crappy call. I'm hoping he'll be able to answer some questions for me...mainly, did this freakin' procedure work or not! As of today, my shortness of breath is not too bad. I ran some errands for the 1st time in ages...got along pretty well...just found myself sucking air a little bit here and there...not nearly as bad as it has been...so I'm keeping my hopes alive...which has been a feat in itself lately.
At this time we are still on for chemo this week...never thought I'd be excited about going to chemo...but I need my juice...scares me going so long without it. I just hope it doesn't kick my butt too hard because...(CALL ME CRAZY)...Zoey and I have plans to go on a float trip with a big group of friends this weekend. On second thought...don't call me crazy...my cell phone minute overage is killing me right now. Not to worry...we're staying at a motel...not in tents...and I actually will NOT be joining them on the river...I'll be the one left behind to read my book along the bank of the river waiting for their return.
Thursday, August 21, 2008
5 Weeks...Still No Chemo...
Once again denied chemo this week because of a fever I've been running since Monday night.
Monday I did get my tube removed...that was the highlight of the week. By evening, I had the chills and the sweats and the aches...you name it.
Tuesday, I called the surgeon's office to let them know...left a message at 10:30am...had to call back at 1pm. The nurse had paged the nurse practioner...she was in a transplant and hadn't gotten back to her yet.
An hour later...
"Well, the Chest X-Ray after we removed the tube looked good...your incision doesn't look infected (although it's gaping and the stitches have been in for 21 days now)...have you talked to Oncology?"
So I call Oncology...and they tell me definitely to go back to the surgeon's office.
They called the surgeon's to have a heart to heart...basically, the surgeon's office didn't have anyone there competent enough to see me that day..."she probably caught a bug"...so everyone agreed that I should go the Emergency Room...EXCEPT ME!
I got the run around all day...it was exhausting or was that the shortness of breath accompanied by fatigue and a 102 temperature? I wasn't going anywhere...I'm so sick of doctors and appointments and co-pays!
Wednesday wasn't any better...had to call my mommy to come take care of me...I love my mom so much...she's always there for me.
I decide to call my family doctor to see if he could see me...I JUST NEED AN ANTIBOTIC PEOPLE! Of course, I had to leave a message...then had to call again a couple hours later (since they never called back) to see if he could fit me in. "Oh, I just got a message back from his nurse that you'll just need to come in the morning during our 8-9am walk in hour."
I called old reliable Libby directly...she's the only one I feel like who gives a shit about me in this jungle of medical mayhem. She was very concerned about the fever and shortness of breath...especially after a lung surgery..."Jo, this a post operative situation and they need to address it!" I told her that I've gotten infections from catheters in the past...and peeing stings a bit still...maybe I have an infection from that. She hung up and called their main nurse Nikki...who in turn called me to say, "We are still recommending that you go to the Emergency Room."
Libby called afterwards to say she agreed...Dr. D. even got on phone and said the ER would be the best place to find out what's going on at this point and that I need to go. I value both their opinions so I begrudingly had Mom take me to the ER.
Many tests and x-rays later...I do have a urinary tract infection and possibly a little pnemonia "but it's hard to tell for sure with fluid in the lung". Great fluid in the lung...just what I wanted to hear! I've been through 20 days of living hell to hear that there is still fluid in my lung...did this procedure even work? Does my surgeon even know? Doubtful...
$100 co-pay later, the ER sends me home with an ANTIBOTIC...no shit Sherlock! If I pull a Bernie Mac...somebody please sue the freakin' surgeon for me!
Frustration Overcometh!
Monday I did get my tube removed...that was the highlight of the week. By evening, I had the chills and the sweats and the aches...you name it.
Tuesday, I called the surgeon's office to let them know...left a message at 10:30am...had to call back at 1pm. The nurse had paged the nurse practioner...she was in a transplant and hadn't gotten back to her yet.
An hour later...
"Well, the Chest X-Ray after we removed the tube looked good...your incision doesn't look infected (although it's gaping and the stitches have been in for 21 days now)...have you talked to Oncology?"
So I call Oncology...and they tell me definitely to go back to the surgeon's office.
They called the surgeon's to have a heart to heart...basically, the surgeon's office didn't have anyone there competent enough to see me that day..."she probably caught a bug"...so everyone agreed that I should go the Emergency Room...EXCEPT ME!
I got the run around all day...it was exhausting or was that the shortness of breath accompanied by fatigue and a 102 temperature? I wasn't going anywhere...I'm so sick of doctors and appointments and co-pays!
Wednesday wasn't any better...had to call my mommy to come take care of me...I love my mom so much...she's always there for me.
I decide to call my family doctor to see if he could see me...I JUST NEED AN ANTIBOTIC PEOPLE! Of course, I had to leave a message...then had to call again a couple hours later (since they never called back) to see if he could fit me in. "Oh, I just got a message back from his nurse that you'll just need to come in the morning during our 8-9am walk in hour."
I called old reliable Libby directly...she's the only one I feel like who gives a shit about me in this jungle of medical mayhem. She was very concerned about the fever and shortness of breath...especially after a lung surgery..."Jo, this a post operative situation and they need to address it!" I told her that I've gotten infections from catheters in the past...and peeing stings a bit still...maybe I have an infection from that. She hung up and called their main nurse Nikki...who in turn called me to say, "We are still recommending that you go to the Emergency Room."
Libby called afterwards to say she agreed...Dr. D. even got on phone and said the ER would be the best place to find out what's going on at this point and that I need to go. I value both their opinions so I begrudingly had Mom take me to the ER.
Many tests and x-rays later...I do have a urinary tract infection and possibly a little pnemonia "but it's hard to tell for sure with fluid in the lung". Great fluid in the lung...just what I wanted to hear! I've been through 20 days of living hell to hear that there is still fluid in my lung...did this procedure even work? Does my surgeon even know? Doubtful...
$100 co-pay later, the ER sends me home with an ANTIBOTIC...no shit Sherlock! If I pull a Bernie Mac...somebody please sue the freakin' surgeon for me!
Frustration Overcometh!
Sunday, August 17, 2008
Recovering from Recovery...
I'm not gonna lie to you all...(you've been too good to me)...but this whole procedure sucks and so does my lung surgeon...I won't go into all that...but trust me...if you ever need any kind of chest or lung surgery...do not go to Dr. R. Scott Stuart at St. Luke's on the Plaza..."that's all I have to say about that".
Dr. D. nixed chemo this week...her reason for waiting was because of an open wound under my right breast next to the shitty gaping stitch-work from the 1st chest tube incision...also possible infection. It's been 4 weeks now since my last round of chemo...at least the numbers have lowered since the excretion of fluid. Once I do resume...we've decided to stick with the current cocktail...which is what I would rather do right now.
I've become quite attached (pun intended) to this tube protruding out my back...I love the way it dangles about a foot into a juice catcher thingymabob that I strap around my neck and carry like an ever so fashionable purse.
The best times are when the tube wraps around a passing door knob...pulling me back and making me scream like a little girl...that ROCKS! Last time I did that was Friday night...it hurt like hell (obviously)...still does (alot)...also, my juice color changed from orange to green and has now stopped...hope that's a good thing...I'll find out tomorrow.
I never thought I'd say this in my entire life...but I miss my bra!
Dr. D. nixed chemo this week...her reason for waiting was because of an open wound under my right breast next to the shitty gaping stitch-work from the 1st chest tube incision...also possible infection. It's been 4 weeks now since my last round of chemo...at least the numbers have lowered since the excretion of fluid. Once I do resume...we've decided to stick with the current cocktail...which is what I would rather do right now.
I've become quite attached (pun intended) to this tube protruding out my back...I love the way it dangles about a foot into a juice catcher thingymabob that I strap around my neck and carry like an ever so fashionable purse.
The best times are when the tube wraps around a passing door knob...pulling me back and making me scream like a little girl...that ROCKS! Last time I did that was Friday night...it hurt like hell (obviously)...still does (alot)...also, my juice color changed from orange to green and has now stopped...hope that's a good thing...I'll find out tomorrow.
I never thought I'd say this in my entire life...but I miss my bra!
Thursday, August 14, 2008
496 to 362...
We're heading in the right direction!
I was a little nervous about the most recent CA125 test because I have not had chemo for 3 weeks due to surgery and recovery. I didn't have it today either because of open wounds and a tube protruding out the right side of my body...Dr. D. wants to see me tomorrow before we move forward with chemo.
Right before the number started dropping we talked about switching chemo regiments...since all this fluid has left my body...the number has definitely been on the decline. I really don't want to switch it up right now...I hope she agrees. The current cocktail I'm on leaves me feeling pretty decent. For instance, Thursday chemo...Friday and Saturday I'm in pretty good shape...then I'm drained and tired for a few days...better than nausea and hair falling out.
It's all about the hair...it's back...it's thick...and it keeps me from looking like a chemo chick!
I was a little nervous about the most recent CA125 test because I have not had chemo for 3 weeks due to surgery and recovery. I didn't have it today either because of open wounds and a tube protruding out the right side of my body...Dr. D. wants to see me tomorrow before we move forward with chemo.
Right before the number started dropping we talked about switching chemo regiments...since all this fluid has left my body...the number has definitely been on the decline. I really don't want to switch it up right now...I hope she agrees. The current cocktail I'm on leaves me feeling pretty decent. For instance, Thursday chemo...Friday and Saturday I'm in pretty good shape...then I'm drained and tired for a few days...better than nausea and hair falling out.
It's all about the hair...it's back...it's thick...and it keeps me from looking like a chemo chick!
Sunday, August 10, 2008
A 1st for Mom...
Mom finally experienced the thrill of mowing a yard for the 1st time in her many years of existence!
Congratulations Donna...and thanks for everything you do!
Congratulations Donna...and thanks for everything you do!
Thursday, August 7, 2008
I'm Baaaccckkkkkk.....
A week ago today, I arrived for the show at 6:15am...time to prep...one of my co-stars is the very cute...Nurse Jason...we bond. Props are in place...the shows about to begin.
Fade into black..."Good night Nurse Jason and good luck to you Dr. Longbearded Lights Out Dude".
Hey wait you guys...I can feel you starting to stick that tube down my throat...I don't think I'm asleep yet here.
If I could just open my eyes or raise a hand...excuse me...I'm still with ya all and I really don't want to be...this is a scary place...keep trying to move something...mind over matter...(bullshit)...I'm frozen here...finally a fade to black.
Sounds fade back in...lights up...I'm baaaccckkkkk...I'm alive!
Bad timing to come out from the fog...tube still in my throat...I'm not liking this scene...at least I had my motion back...my sign language was very clear...get this thing out of my throat! Oh, so you're gonna cop a Zoey attitude on me and make me repeat myself...I'M TRYING TO GESTURE NICELY HERE....GET THIS THING OUT OF MY THROAT AND DO IT NOW!!!!!!!!
There was a clock right in front of me that was my focal point...this is not cool...not to mention my pain was at a "9" and they weren't doing much about that yet either...20 MINUTES LATER they heed my FINAL warning...I'M ABOUT TO YANK THIS DAMN THING OUT MYSELF...finally! Thanks for leaving me hanging there...Dr. Longbearded Lights Out Dude...now lets just leave me at a "9" for 20 more minutes...where's my Nurse Jason...I don't see him anywhere...he wouldn't do this to me.
Finally, the machine that hooks you up to the pump...the pump with the button I get to coddle in my hand...control my own destiny with pain...awwwwww....it's my old friend...Mr. Morphin Button. You can call on Mr. M.'s service as much as you want but it will only beep of success every 8 minutes...lucky for me...there's another clock straight ahead in my room.
By 2pm, I was feeling much better...by 5pm they had me up in a chair eating real food. It wasn't until about 8pm when Dr. Longbeard's surgery drugs faded completely away...my voice was horse and my throat felt like it was assaulted by a big mean tuby-thing.
Denny and Uncle Rusty both stopped by to help clock my 8 minutes for me...the later it got...the more the pain increased...now I've got the chills and my teeth are chattering. One of my visitors had a friendly chat with the nurse and soon more drugs were given and Mr. M.'s dose was bumped up.
103 temperature...I remember Hottle Mann reporting back earlier of possible fever side effects from the Talc...she's never steered me wrong...(at least not when it comes to medical issues). I fought a good battle that night...I was wringing wet but round one goes to me!
Friday...I was fed and walked 3 times today...even awarded "The Patient with the Most Tubes"...yeah for me!
It wasn't any easy task walking me...we had to contend with the following obstacles:
* My feet
* Heart monitor
* Oygen tube
* Chest tube
* Pump tube for the Chest tube
* Pee tube
* (and lets not forget) Mr. Morphin tube...all while pushing a shopping cart! I don't know if they steal those things or what...but this one belonged to Dillon's.
Saturday...fought another fever through the night...woke up sweaty to the sight of...Nurse Jason...he was back to take care of me today. We got to know each other better...he just graduated from Nursing School in Arkansas...passed his boards 2 weeks ago...(started shaving last week)...was born the year I graduated college...moved up here with his fiance who's starting dental school this fall...enough about Nurse Jason...we had a good day together.
Nights still aren't great...between fevers...shortness of breath...annoying wheezing from my throat...and coughing a sore lung up...it was a party!
Sunday...was good...freed from a few tubes...I started to feel like a human again. Mom and I lounged...watched bad TV...and worked crossword puzzles all day.
Monday...flat out sucked! Shortness of breath and wheezing are pushing me to the edge...and by the way, why the hell is this not working??!!!! I'd just as soon forget about this day entirely.
Tuesday...they remove the chest tube in the morning and added a different one by afternoon...still pockets of fluid causing the shortness of breath...had to move to a different spot...this shit's getting old...I was spent! I just want to go home. Zoey had a great time on the float trip and with the Mann's but she's ready to come home too. I know Tracy's been long awaiting our return...(she watches our dogs)!
Wednesday...offer was made to send me home with a portable chest tube bag and a home health care person...Done Deal! I get to carry it with me everywhere but no problem...and really no choice...it is sticking out the side of my body right now...whatever...just get me home!
It took about 8 hours...but I made it home again...Zoey was there within 20 minutes...full of hugs and very talkative...dogs were excited as you can imagine...and I felt 10x better just being back with my family!
Fade into black..."Good night Nurse Jason and good luck to you Dr. Longbearded Lights Out Dude".
Hey wait you guys...I can feel you starting to stick that tube down my throat...I don't think I'm asleep yet here.
If I could just open my eyes or raise a hand...excuse me...I'm still with ya all and I really don't want to be...this is a scary place...keep trying to move something...mind over matter...(bullshit)...I'm frozen here...finally a fade to black.
Sounds fade back in...lights up...I'm baaaccckkkkk...I'm alive!
Bad timing to come out from the fog...tube still in my throat...I'm not liking this scene...at least I had my motion back...my sign language was very clear...get this thing out of my throat! Oh, so you're gonna cop a Zoey attitude on me and make me repeat myself...I'M TRYING TO GESTURE NICELY HERE....GET THIS THING OUT OF MY THROAT AND DO IT NOW!!!!!!!!
There was a clock right in front of me that was my focal point...this is not cool...not to mention my pain was at a "9" and they weren't doing much about that yet either...20 MINUTES LATER they heed my FINAL warning...I'M ABOUT TO YANK THIS DAMN THING OUT MYSELF...finally! Thanks for leaving me hanging there...Dr. Longbearded Lights Out Dude...now lets just leave me at a "9" for 20 more minutes...where's my Nurse Jason...I don't see him anywhere...he wouldn't do this to me.
Finally, the machine that hooks you up to the pump...the pump with the button I get to coddle in my hand...control my own destiny with pain...awwwwww....it's my old friend...Mr. Morphin Button. You can call on Mr. M.'s service as much as you want but it will only beep of success every 8 minutes...lucky for me...there's another clock straight ahead in my room.
By 2pm, I was feeling much better...by 5pm they had me up in a chair eating real food. It wasn't until about 8pm when Dr. Longbeard's surgery drugs faded completely away...my voice was horse and my throat felt like it was assaulted by a big mean tuby-thing.
Denny and Uncle Rusty both stopped by to help clock my 8 minutes for me...the later it got...the more the pain increased...now I've got the chills and my teeth are chattering. One of my visitors had a friendly chat with the nurse and soon more drugs were given and Mr. M.'s dose was bumped up.
103 temperature...I remember Hottle Mann reporting back earlier of possible fever side effects from the Talc...she's never steered me wrong...(at least not when it comes to medical issues). I fought a good battle that night...I was wringing wet but round one goes to me!
Friday...I was fed and walked 3 times today...even awarded "The Patient with the Most Tubes"...yeah for me!
It wasn't any easy task walking me...we had to contend with the following obstacles:
* My feet
* Heart monitor
* Oygen tube
* Chest tube
* Pump tube for the Chest tube
* Pee tube
* (and lets not forget) Mr. Morphin tube...all while pushing a shopping cart! I don't know if they steal those things or what...but this one belonged to Dillon's.
Saturday...fought another fever through the night...woke up sweaty to the sight of...Nurse Jason...he was back to take care of me today. We got to know each other better...he just graduated from Nursing School in Arkansas...passed his boards 2 weeks ago...(started shaving last week)...was born the year I graduated college...moved up here with his fiance who's starting dental school this fall...enough about Nurse Jason...we had a good day together.
Nights still aren't great...between fevers...shortness of breath...annoying wheezing from my throat...and coughing a sore lung up...it was a party!
Sunday...was good...freed from a few tubes...I started to feel like a human again. Mom and I lounged...watched bad TV...and worked crossword puzzles all day.
Monday...flat out sucked! Shortness of breath and wheezing are pushing me to the edge...and by the way, why the hell is this not working??!!!! I'd just as soon forget about this day entirely.
Tuesday...they remove the chest tube in the morning and added a different one by afternoon...still pockets of fluid causing the shortness of breath...had to move to a different spot...this shit's getting old...I was spent! I just want to go home. Zoey had a great time on the float trip and with the Mann's but she's ready to come home too. I know Tracy's been long awaiting our return...(she watches our dogs)!
Wednesday...offer was made to send me home with a portable chest tube bag and a home health care person...Done Deal! I get to carry it with me everywhere but no problem...and really no choice...it is sticking out the side of my body right now...whatever...just get me home!
It took about 8 hours...but I made it home again...Zoey was there within 20 minutes...full of hugs and very talkative...dogs were excited as you can imagine...and I felt 10x better just being back with my family!
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