Hello, everyone!
I feel like I've been run over by a truck. No, make that a very long train. Yesterday I was walking from my room to the bathroom and my right leg just gave out on me and down to the floor I went. I bumped my head on the wall and wrenched out my shoulder. My right leg, which I landed on when I fell, hurts so bad I'm considering amputation!!! Last night I've been doing the heating pad thing, but I've got so many areas that hurt and not enough heating pad!!
It's scary that my right leg is getting weaker and going out like that, with no warning. I'm wondering if it's related to the pinched nerves from my back doing it. When I go through with that bariatric surgery, maybe it will relieve a lot of tension on those nerve roots. We can ONLY pray!! :0)
I've been working on the blog again. Last post I told you I moved the side bar stuff over to the right. No, your eyes are NOT deceiving you, I moved everything back to the left again. I'm a lefty, and I just couldn't get use to using the right side. So it's gonna stay on the left.
I also was playing around with Photobucket and made a really neat slide show that is a TV and on the screen are all my pictures! It's really cool. Check it out...it's down towards the end of the blog. You can do all kinds of amazing things at Photobucket, so I recommend you try it out. It's at www.photobucket.com.
That pretty much is it on this end of the world. It's still HOT here and won't get cooler probably until October. Gotta love Arizona around summertime!! Nothing new to report on the hubby, he is doing OK, although his pain has returned from the Gleevec he must take to keep his tumor killed. He also has had some nausea and vomiting if he doesn't take it right after his meals. I was hoping he wouldn't have the pain this time around, but I was wrong. Thank goodness he is going to the pain specialist.
Hope you all have a great middle of the week day!
Love ya all!
God bless,
Missy
PS...As you might have noticed, Google FINALLY approved my site for advertising!! So now I'm like everyone else with google ads on their blog. I know, I know, what can I say? The strangest things excite me!!
Showing posts with label Gleevec. Show all posts
Showing posts with label Gleevec. Show all posts
Wednesday, September 29, 2010
Saturday, September 18, 2010
Hope On Hold
Howdy, everyone!
Well, I'm doing better than my last post. I am so sorry about that post, I must have seemed like a wild woman or something! My thoughts were all scattered all over the place and I just felt out of control of EVERYTHING. I just couldn't believe what had happened...and just like when I went to the neurosurgeon all excited because he said he could "fix me" and then he rejected me and called me a "poor surgical risk" until I lose weight. I learned one very big lesson through all of this.....DON'T GET YOUR HOPES UP UNTIL IT'S WRITTEN IN STONE!! And that's what I plan to do.
Over the past few days, I've been researching bariatric clinics and that one surgeon my insurance referred me to....that was NOT part of the seminar I went to last month. I should have put two and two together and questioned if I was at the right seminar. Oh, well. Hindsight is ALWAYS 20/20. Anyway, what I found out about the surgeon my insurance will cover is that he is very popular with his patients. He had something like 28 reviews by past and current patients and not a negative word about him anywhere. He comes highly recommended by his patients. And he works out of Banner Gateway hospital instead of that one in Scottsdale where I went to. I truly believe that I was shunted to the wrong surgeon by that seminar. Because they called me bright and early the following morning to set up an appointment. I had even asked her if my insurance covered their program and she lied and said "yes." Then, I wasted two weeks of my time waiting for the disastrous appointment to find out they DON'T take my insurance!
Well, I can't go back in time and fix things. Don't ya wish you could? Yesterday I called the bariatric clinic in Gilbert and unfortunately, I have to take ANOTHER seminar, but luckily this one is this coming Thursday. So I don't have to wait as long. The surgeon I signed up for does the "Realize" band, NOT the Lap-band. They are similar products, just different names, from what I understand. So I can see why I need to go to their seminar as I don't know too much about this "Realize" band. Then after I go to the seminar, I can set up an appointment with the surgeon. Hopefully that appointment will go a lot better!! But I'm not going to get my hopes up yet, or expect anything until AFTER the fact. It just hurts too much when things don't go your way and you were sooooo excited about it, like I was about the Lap-band. I have learned, unfortunately, the hard way about hoping too much.
I am in such flare-up. My right hip hurts so bad every time I put weight on it. I can't remember injuring it in any way. I think it's because the muscles in my back and legs are so tight because of the fibro. I'm on two muscle relaxers that work pretty well....when I'm laying down and using my wedge pillow, I am out like a light within minutes. I've been trying to finish my Janet Evanovich book for a week now, and can't because I keep falling asleep!! And it's an excellent book. If you like mysteries and funny characters, you will LOVE Janet Evanovich. Her books are just a scream with all the hilarious plots and characters. Her main character, Stephanie Plum, is a bounty hunter that isn't every good and her side-kick, Lula, was a former 'ho on the streets. These two gals get themselves into trouble each and every time. Once you read one of her books, you are hooked!! Here is the title of the book I'm reading now. You can buy it right from my favorite store, Amazon! (Yes, I'm part of their affiliate program and for everyone that goes to Amazon through one of MY links, I get paid!)
Alrighty, enough said on that. My hubby is doing fantastic! He is back to his "usual" self. I almost was going to say normal, but WHO really is normal? LOL... He started the Gleevec again last week and is on the full strength dosage now, like what he took before his surgery. Hopefully he won't get that awful leg pain back again as a side-effect from the Gleevec. But if he does, then his pain management doctor is only a phone call away. He still is on the Duragesic patch and that seems to be keeping the pain at bay really well.
His appetite is great, no more nausea or vomiting, and no more diarrhea. I think we have weathered the storm. Whew, what a summer we all had!! I'm soooo glad it's finally over with. Now if only our weather would reflect fall and get out of the triple digits!! I hear by next week, though, we'll be in the 90's. Wooo-hooo!! Major cool wave, huh? LOL!!!!
I hope you all are doing happy and well. God bless you all!
Until next post,
Missy
Well, I'm doing better than my last post. I am so sorry about that post, I must have seemed like a wild woman or something! My thoughts were all scattered all over the place and I just felt out of control of EVERYTHING. I just couldn't believe what had happened...and just like when I went to the neurosurgeon all excited because he said he could "fix me" and then he rejected me and called me a "poor surgical risk" until I lose weight. I learned one very big lesson through all of this.....DON'T GET YOUR HOPES UP UNTIL IT'S WRITTEN IN STONE!! And that's what I plan to do.
Over the past few days, I've been researching bariatric clinics and that one surgeon my insurance referred me to....that was NOT part of the seminar I went to last month. I should have put two and two together and questioned if I was at the right seminar. Oh, well. Hindsight is ALWAYS 20/20. Anyway, what I found out about the surgeon my insurance will cover is that he is very popular with his patients. He had something like 28 reviews by past and current patients and not a negative word about him anywhere. He comes highly recommended by his patients. And he works out of Banner Gateway hospital instead of that one in Scottsdale where I went to. I truly believe that I was shunted to the wrong surgeon by that seminar. Because they called me bright and early the following morning to set up an appointment. I had even asked her if my insurance covered their program and she lied and said "yes." Then, I wasted two weeks of my time waiting for the disastrous appointment to find out they DON'T take my insurance!
Well, I can't go back in time and fix things. Don't ya wish you could? Yesterday I called the bariatric clinic in Gilbert and unfortunately, I have to take ANOTHER seminar, but luckily this one is this coming Thursday. So I don't have to wait as long. The surgeon I signed up for does the "Realize" band, NOT the Lap-band. They are similar products, just different names, from what I understand. So I can see why I need to go to their seminar as I don't know too much about this "Realize" band. Then after I go to the seminar, I can set up an appointment with the surgeon. Hopefully that appointment will go a lot better!! But I'm not going to get my hopes up yet, or expect anything until AFTER the fact. It just hurts too much when things don't go your way and you were sooooo excited about it, like I was about the Lap-band. I have learned, unfortunately, the hard way about hoping too much.
I am in such flare-up. My right hip hurts so bad every time I put weight on it. I can't remember injuring it in any way. I think it's because the muscles in my back and legs are so tight because of the fibro. I'm on two muscle relaxers that work pretty well....when I'm laying down and using my wedge pillow, I am out like a light within minutes. I've been trying to finish my Janet Evanovich book for a week now, and can't because I keep falling asleep!! And it's an excellent book. If you like mysteries and funny characters, you will LOVE Janet Evanovich. Her books are just a scream with all the hilarious plots and characters. Her main character, Stephanie Plum, is a bounty hunter that isn't every good and her side-kick, Lula, was a former 'ho on the streets. These two gals get themselves into trouble each and every time. Once you read one of her books, you are hooked!! Here is the title of the book I'm reading now. You can buy it right from my favorite store, Amazon! (Yes, I'm part of their affiliate program and for everyone that goes to Amazon through one of MY links, I get paid!)
Alrighty, enough said on that. My hubby is doing fantastic! He is back to his "usual" self. I almost was going to say normal, but WHO really is normal? LOL... He started the Gleevec again last week and is on the full strength dosage now, like what he took before his surgery. Hopefully he won't get that awful leg pain back again as a side-effect from the Gleevec. But if he does, then his pain management doctor is only a phone call away. He still is on the Duragesic patch and that seems to be keeping the pain at bay really well.
His appetite is great, no more nausea or vomiting, and no more diarrhea. I think we have weathered the storm. Whew, what a summer we all had!! I'm soooo glad it's finally over with. Now if only our weather would reflect fall and get out of the triple digits!! I hear by next week, though, we'll be in the 90's. Wooo-hooo!! Major cool wave, huh? LOL!!!!
I hope you all are doing happy and well. God bless you all!
Until next post,
Missy
Friday, September 10, 2010
Back To...Normal?
Woo-hoo! Yippee!! Can I officially say that we are back to "normal?" What the heck IS normal, anyway? Frankie is doing fabulous. Even his pain levels have decreased some - he remains on the Duragesic patch, however, and Percocet for breakthrough pain. He resumed the Gleevec (for the GIST cancer that he has) two days ago after a 2 month hold due to the surgery and all the complications that ensued. Now that he is back on the Gleevec, the leg pain will resume full force. I hope not - I truly do. But that side-effect is one he has always had with Gleevec. But I'd rather him be alive than to stop the Gleevec all together and have the cancer return. He feels the same way, although it was nice to have that little pill "vacation" for awhile!!! It's like returning to work after a vacation. You don't really want to be there, but you have to because if you don't, how will the bills get paid?
I took a two photos of Frankie just about 10 minutes ago to show you how he's coming along. The first one is of him sitting in his favorite spot on the couch, eating a bowl of cereal. The second one is of his drain-free belly! All that's left is the incision (which is all healed up) and a band-aid over the drain site. I'm keeping it there because he's a "picker" and always picks or peels scabs off before they are ready to come off. He even has scars from old scabs he's picked years ago. I told him if he even remotely touches the scab over that hole, that I will personally cut every one of his fingers off! I'm mean, aren't I? It's just that hole goes down into ultimately his intestines. I don't want any repeat of infection or ANYTHING to land us back at square one again!! Here's the pics for your viewing pleasure:
NO DRAIN!! Do ya like the neon green band-aid? :0)
Doesn't he look good, though? He's pale, still, but his red blood cell count went from 8.2 to 10. My mother-in-law's cooking is great AND very healing, since he is on NO iron supplements. The only thing I have him on are Vitamin B Complex, Multivitamin, and his regular medications. He can't really go out in the sun too much because of the medications he takes don't mesh well with sunlight. If he sweats too much, his pain patches fall off or even worse, his body absorbs all the medication from it and he gets a little "loopy." Luckily, that has happened only once. He sounded absolutely drunk that day and slept all day and all night! So we try to keep him nice and cool. Which sometimes is very hard in steamy Arizona!!
Jackie feels left out, so I took a picture of him, too. He is in his "house" which REALLY is his carrier. (Shhhh...don't tell him that!)) He loves his "house" and is in it quite frequently. That or his little cat bed that I have right next to his "house." He only wishes he could put the bed INSIDE the house....then he'd have it made! But his bed is too big. :-(
Isn't he just adorable? He knows it, too. Silly kitty!!! He has both me AND my husband wrapped around his fuzzy tail!! I just love his new "house", too. It's rugged and has rods inside that keep the ceiling up and the sides. His last carrier was awful....it was too soft and kept collapsing on him. I've picked out from Amazon what looks closest to what Jack has now and the same price I paid for it, too. I highly recommend it to any pet-owner!
Well, that pretty much is it. I'm in a flare-up mode (when am I NOT is a better question!) and just so exhausted. Like I can't ever make up sleep. My limbs feel like heavy sand bags and when I get to my feet, all my weight just drops and my knees sometimes will buckle underneath me. I cannot WAIT to start this Lap-band "journey" as they call it in their brochure. Next Wednesday is the initial appointment where they tell me what insurance will pay and what we will pay. I hope it's not too much....so please pray for me that it won't be bigger than the national debt! LOL!
Tim, the visiting nurse is coming over one last time to discharge Frankie off home health services. I will miss him! He's funny, nice and easy to talk to. Very helpful, too. And then I have a doctor's appt. at 12:30. Much to do yet I sit here playing on the computer.....
Be sure to check out my blog award page. I've entered more blog sites you MUST see...they are fantastic! If you have a blog, leave the URL in my comments section and I will come visit your blog. I love blog-hopping!
And PLEASE, please vote in my poll up above, to the left in the side bar. You can't miss it...it's the first item there. I would greatly appreciate it!
You all have a fabulous Friday and a great weekend. I hope you don't have flare-ups or pain of any kind, my friends.
God bless,
Until next post,
Missy
I took a two photos of Frankie just about 10 minutes ago to show you how he's coming along. The first one is of him sitting in his favorite spot on the couch, eating a bowl of cereal. The second one is of his drain-free belly! All that's left is the incision (which is all healed up) and a band-aid over the drain site. I'm keeping it there because he's a "picker" and always picks or peels scabs off before they are ready to come off. He even has scars from old scabs he's picked years ago. I told him if he even remotely touches the scab over that hole, that I will personally cut every one of his fingers off! I'm mean, aren't I? It's just that hole goes down into ultimately his intestines. I don't want any repeat of infection or ANYTHING to land us back at square one again!! Here's the pics for your viewing pleasure:
Doesn't he look good, though? He's pale, still, but his red blood cell count went from 8.2 to 10. My mother-in-law's cooking is great AND very healing, since he is on NO iron supplements. The only thing I have him on are Vitamin B Complex, Multivitamin, and his regular medications. He can't really go out in the sun too much because of the medications he takes don't mesh well with sunlight. If he sweats too much, his pain patches fall off or even worse, his body absorbs all the medication from it and he gets a little "loopy." Luckily, that has happened only once. He sounded absolutely drunk that day and slept all day and all night! So we try to keep him nice and cool. Which sometimes is very hard in steamy Arizona!!
Jackie feels left out, so I took a picture of him, too. He is in his "house" which REALLY is his carrier. (Shhhh...don't tell him that!)) He loves his "house" and is in it quite frequently. That or his little cat bed that I have right next to his "house." He only wishes he could put the bed INSIDE the house....then he'd have it made! But his bed is too big. :-(
Well, that pretty much is it. I'm in a flare-up mode (when am I NOT is a better question!) and just so exhausted. Like I can't ever make up sleep. My limbs feel like heavy sand bags and when I get to my feet, all my weight just drops and my knees sometimes will buckle underneath me. I cannot WAIT to start this Lap-band "journey" as they call it in their brochure. Next Wednesday is the initial appointment where they tell me what insurance will pay and what we will pay. I hope it's not too much....so please pray for me that it won't be bigger than the national debt! LOL!
Tim, the visiting nurse is coming over one last time to discharge Frankie off home health services. I will miss him! He's funny, nice and easy to talk to. Very helpful, too. And then I have a doctor's appt. at 12:30. Much to do yet I sit here playing on the computer.....
Be sure to check out my blog award page. I've entered more blog sites you MUST see...they are fantastic! If you have a blog, leave the URL in my comments section and I will come visit your blog. I love blog-hopping!
And PLEASE, please vote in my poll up above, to the left in the side bar. You can't miss it...it's the first item there. I would greatly appreciate it!
You all have a fabulous Friday and a great weekend. I hope you don't have flare-ups or pain of any kind, my friends.
God bless,
Until next post,
Missy
Tuesday, September 7, 2010
Today Is Hopefully THE DAY...
that Frankie gets his drain removed! I can't see how they would keep it in, since half of it is out of where it should be. I can't even flush the darn thing anymore! And the drainage has dwindled down to a mere fraction of what it used to be. His belly looks so incredibly sore. What with having that drain tube sticking out and some bruising (although every faint by this time) and his incision line through his abdomen. Hopefully this will be the LAST surgery ever. One can live in hope, can't they?? He's doing well otherwise. Vitals good, done with antibiotic course, no foul odor with drainage, appetite WAY good and NO nausea or vomiting in over a week. I think we are finally out of the woods. Of course, now I've just jinxed the whole thing by saying that!!!
Today will be very busy for Frankie & I. He has his oncologist appt this morning at 10am and we'll be talking about the future of the Gleevec medication and what he will be restarted on if that's the decision made. I would be way more comfortable having him on at least half the dosage to make sure the residual tumor that couldn't be removed stays dead. I don't trust this tumor....no sirree....not as far as I can throw it! LOL! I think the doctor is in agreement with that as he said at the last appointment that he would be restarted on half a dose once they restart it. So is today the day for that, too, I wonder? We shall see.
Then we go for my lab work. Hard to believe that 6 weeks have passed. I have a standing order at the lab for it every 6 weeks. Actually, I'm a day late, but I'm sure that won't be a problem.
After that, we go to Frankie's surgeon to have the drain removed. YAY! That's at 2pm or thereabouts. So we'll have a busy day. It'll feel good to get back home again.
I've been having a blast handing out my blog awards to various favorite blogs, but either the emails are getting lost or people are confused about what to do with them. And NOBODY has left a comment so I can visit their blog. Nobody like awards anymore? When my mom and I were doing our website umpteen years ago, web awards were the rage and people collected them or had whole pages devoted JUST for their awards. Maybe I'm out of the loop again with these awards. Anyway, if you get an award from me, please put it on your blog (in blogger, you would add it in just like a picture or slideshow on the sidebar). Or, you can write a new post about your award and add it on like you would a picture. Hope this clears some confusion. If you can add a link to my site, I'd appreciate it. That's all I ask.
I've gotten only 5 votes in my poll about if you like my original poems in the blog. The poll is up for two weeks, so PLEASE cast your vote. I won't add any poems in until the poll closes. It's completely annonymous, I won't know who voted what....I promise! So please just vote. :0)
That pretty much is it. I'm getting around with my boot - boy, it sure is a conversation starter. Everyone has asked what happened to my foot. It really does help with that arch pain, though, so I can't complain about it. I just wonder how I sprained my foot! My back has been killing me, as usual, so I applied my TENS unit and it is better. I find if I wear it one day on, one day off, my skin doesn't get near as irritated or itchy. And I no longer use the conductive gel. If you are interested in TENS units, check out Amazon:
OK, that's my sales pitch for TENS. Get one today...they are really great for back pain. I'm living testimony!
Hope you all have a great Labor Day and now it's back to work and school. Yuck! :-( Although, I'd love it to work again and feel useful to society, instead of a leech, which is how I feel now. So to those of you with jobs and can work, good for you....keep it up!! The saying is definitely true: you truly don't know what you lost until it's gone.
God bless!
Until next post,
Missy
PS...I've added a new slideshow with a bunch of new pics and my family. If you are interested, you can find it by scrolling down on the sidebar. It's called "Down Memory Lane." Hope you enjoy it!!
Today will be very busy for Frankie & I. He has his oncologist appt this morning at 10am and we'll be talking about the future of the Gleevec medication and what he will be restarted on if that's the decision made. I would be way more comfortable having him on at least half the dosage to make sure the residual tumor that couldn't be removed stays dead. I don't trust this tumor....no sirree....not as far as I can throw it! LOL! I think the doctor is in agreement with that as he said at the last appointment that he would be restarted on half a dose once they restart it. So is today the day for that, too, I wonder? We shall see.
Then we go for my lab work. Hard to believe that 6 weeks have passed. I have a standing order at the lab for it every 6 weeks. Actually, I'm a day late, but I'm sure that won't be a problem.
After that, we go to Frankie's surgeon to have the drain removed. YAY! That's at 2pm or thereabouts. So we'll have a busy day. It'll feel good to get back home again.
I've been having a blast handing out my blog awards to various favorite blogs, but either the emails are getting lost or people are confused about what to do with them. And NOBODY has left a comment so I can visit their blog. Nobody like awards anymore? When my mom and I were doing our website umpteen years ago, web awards were the rage and people collected them or had whole pages devoted JUST for their awards. Maybe I'm out of the loop again with these awards. Anyway, if you get an award from me, please put it on your blog (in blogger, you would add it in just like a picture or slideshow on the sidebar). Or, you can write a new post about your award and add it on like you would a picture. Hope this clears some confusion. If you can add a link to my site, I'd appreciate it. That's all I ask.
I've gotten only 5 votes in my poll about if you like my original poems in the blog. The poll is up for two weeks, so PLEASE cast your vote. I won't add any poems in until the poll closes. It's completely annonymous, I won't know who voted what....I promise! So please just vote. :0)
That pretty much is it. I'm getting around with my boot - boy, it sure is a conversation starter. Everyone has asked what happened to my foot. It really does help with that arch pain, though, so I can't complain about it. I just wonder how I sprained my foot! My back has been killing me, as usual, so I applied my TENS unit and it is better. I find if I wear it one day on, one day off, my skin doesn't get near as irritated or itchy. And I no longer use the conductive gel. If you are interested in TENS units, check out Amazon:
OK, that's my sales pitch for TENS. Get one today...they are really great for back pain. I'm living testimony!
Hope you all have a great Labor Day and now it's back to work and school. Yuck! :-( Although, I'd love it to work again and feel useful to society, instead of a leech, which is how I feel now. So to those of you with jobs and can work, good for you....keep it up!! The saying is definitely true: you truly don't know what you lost until it's gone.
God bless!
Until next post,
Missy
PS...I've added a new slideshow with a bunch of new pics and my family. If you are interested, you can find it by scrolling down on the sidebar. It's called "Down Memory Lane." Hope you enjoy it!!
Friday, August 20, 2010
"Paying The Piper"
Howdy, everyone!
My father would always say, "time to pay the piper" and I never could quite grasp that concept until I got older and contracted fibromyalgia. Now I feel like I'm "paying the piper" ALL the time for EVERYTHING I do! The events of this summer are all starting to hit me now. I was on "auto pilot" for a great part of the summer, during Frankie's surgery and subsequent hospitalizations. Now it feels like my "auto pilot" has bailed out on me and all that's left is severe exhaustion. I've even too tired to feel tired. Every bone and muscle aches all the way down into my inner core. No matter what I do or what I take, it doesn't matter.
Yesterday I went to the foot doctor because I was having severe heel and arch pain in my left foot. I had plantar fascitis a few years back and thought that is what this is now. The doctor doesn't think so, he thinks it's an inflammation of "Baxter's nerve." What I wanna know is WHO is Baxter and why is HIS nerve in MY body? LOL.... Anyway, all kidding aside, he gave me a shot in my heel area (ouch!) and I see him again in two weeks for another shot. Since I'm diabetic, he also is going to trim away at my ingrown big toe nail and that will help with balance. He said I do a good job at clipping my nails. This surprised me very much as I can barely SEE my nails, let alone clip 'em correctly!
Frankie is doing well, just very tired and weak. Holed up in the hospital day after day will do that to you. He's glad to be at home, in his own bed with his lovely wife at his side. (That would be me!) His drain is still draining, but not as much and it has no smell now, which is absolutely heavenly. Before, it smelled like something from Hell that had creeped up. Pseudomonas infections do have a weird smell - sometimes it's a fruity type smell and other times it smells like spoiled soil. He will be seeing the surgeon on Monday and dare we hope the drain will be removed? I hope so! But I have been very diligent in taking care of it - the dressing, flushing and emptying. I've sanitized everything - including Frankie! LOL....
Today we went to see Frankie's pain specialist. The Oxy IR that he was on for breakthrough pain just wasn't enough and he was taking the maximum dosage. He has pain in his abdomen where the drain enters the skin and on the right side of his abdomen. His legs aren't too bad anymore because he hasn't had the Gleevec since the middle part of June. That was placed on hold because of the surgery and now because of the infection in his drain. Anyway, in the hospital they had him on Percocet, and it actually was working, so they sent him home on enough until we could get to the pain specialist. Frankie's specialist is so incredibly nice and caring - he said that "if it works, we'll continue that" He didn't want to increase the Fentanyl patch because he believes this abdomen pain is temporary and as soon as the drain is out, he will feel better.
I feel just absolutely wrung out. Even breathing is an effort I'm too tired to take. And this heat just drags on and on. I can't wait for winter to come and here in AZ, winters are great!! All sunshine and beautiful weather to get out and walk and do things that you enjoy doing.
Well, that's all the news here. I hope you all have a blessed weekend and spend some much needed time with family and friends. Eat well, get plenty of rest and....yeah, right! This coming from me? The girl who loves fast foods and doughnuts? LOL.... Now, that was the OLD me. The NEW me is going to go through this lap band procedure and eat right and exercise as much as I can handle. I can't wait to start my new adventure!!
Love ya all!
Until next post,
Missy
My father would always say, "time to pay the piper" and I never could quite grasp that concept until I got older and contracted fibromyalgia. Now I feel like I'm "paying the piper" ALL the time for EVERYTHING I do! The events of this summer are all starting to hit me now. I was on "auto pilot" for a great part of the summer, during Frankie's surgery and subsequent hospitalizations. Now it feels like my "auto pilot" has bailed out on me and all that's left is severe exhaustion. I've even too tired to feel tired. Every bone and muscle aches all the way down into my inner core. No matter what I do or what I take, it doesn't matter.
Yesterday I went to the foot doctor because I was having severe heel and arch pain in my left foot. I had plantar fascitis a few years back and thought that is what this is now. The doctor doesn't think so, he thinks it's an inflammation of "Baxter's nerve." What I wanna know is WHO is Baxter and why is HIS nerve in MY body? LOL.... Anyway, all kidding aside, he gave me a shot in my heel area (ouch!) and I see him again in two weeks for another shot. Since I'm diabetic, he also is going to trim away at my ingrown big toe nail and that will help with balance. He said I do a good job at clipping my nails. This surprised me very much as I can barely SEE my nails, let alone clip 'em correctly!
Frankie is doing well, just very tired and weak. Holed up in the hospital day after day will do that to you. He's glad to be at home, in his own bed with his lovely wife at his side. (That would be me!) His drain is still draining, but not as much and it has no smell now, which is absolutely heavenly. Before, it smelled like something from Hell that had creeped up. Pseudomonas infections do have a weird smell - sometimes it's a fruity type smell and other times it smells like spoiled soil. He will be seeing the surgeon on Monday and dare we hope the drain will be removed? I hope so! But I have been very diligent in taking care of it - the dressing, flushing and emptying. I've sanitized everything - including Frankie! LOL....
Today we went to see Frankie's pain specialist. The Oxy IR that he was on for breakthrough pain just wasn't enough and he was taking the maximum dosage. He has pain in his abdomen where the drain enters the skin and on the right side of his abdomen. His legs aren't too bad anymore because he hasn't had the Gleevec since the middle part of June. That was placed on hold because of the surgery and now because of the infection in his drain. Anyway, in the hospital they had him on Percocet, and it actually was working, so they sent him home on enough until we could get to the pain specialist. Frankie's specialist is so incredibly nice and caring - he said that "if it works, we'll continue that" He didn't want to increase the Fentanyl patch because he believes this abdomen pain is temporary and as soon as the drain is out, he will feel better.
I feel just absolutely wrung out. Even breathing is an effort I'm too tired to take. And this heat just drags on and on. I can't wait for winter to come and here in AZ, winters are great!! All sunshine and beautiful weather to get out and walk and do things that you enjoy doing.
Well, that's all the news here. I hope you all have a blessed weekend and spend some much needed time with family and friends. Eat well, get plenty of rest and....yeah, right! This coming from me? The girl who loves fast foods and doughnuts? LOL.... Now, that was the OLD me. The NEW me is going to go through this lap band procedure and eat right and exercise as much as I can handle. I can't wait to start my new adventure!!
Love ya all!
Until next post,
Missy
Wednesday, August 11, 2010
Here We Go Again
Howdy, my friends!
Hope you all have been happy and well this past week. My husband and I have been trying very hard to get a sense of "normalcy" back into our lives. We haven't had much luck. We thought we had the nausea/vomiting problem licked, but it returned with a vengeance this morning. He was supposed to get a CT scan of his abdomen this morning, but he kept vomiting that I saw NO WAY he could keep the oral contrast down. So we called and rescheduled it for tomorrow at 9am. Check in at 8am. I hope and pray that tomorrow will be a better day. There's always hope!
As soon as he has the CT scan, the surgeon will call us and let us know what it said and what the "game plan" is from here. Will he keep the abdominal drain for two weeks or will he get rid of it in one week....that is the million dollar question. I don't want to remove it too soon, especially since it still is getting a little drainage out of it. Only about 20cc/day, but if that drain were gone, it would build up inside him and block the intestines again. We definitely don't want that!!!
Frankie went to the oncologist on Monday and he said that as soon as the CT scan is done, he will look it up and see where we should proceed with the Gleevec. He already has told us that he will start Frankie out at 400mg/day for awhile then increase it to his usual dosage of 400mg twice a day. We just don't want to take a chance that the tumor will return if he is off the Gleevec. He also had labs drawn to see if he is anemic still. The doc said that if he was, he could get an outpatient transfusion.
That pretty much is all that's going on so far. I still am just absolutely worn down from this past month of going back and forth to the hospital in this drastic heat. Yesterday I slept from 5pm to 7am the following day! I couldn't believe it!! My husband was right beside me, doing the same thing! We both are just so worn down....come on, B vitamins, kick in soon and give us some energy!!!! LOL!!
As you can see, I did a little redecorating of the blog. I hope you like it and it's easier to read. I signed up for Google AdSense (which is where you can earn money by the ads on your blog) and was rejected. First thing, they were looking at a totally different blog that wasn't even mine. Then, they said that it was too hard to read and I had broken links. So untrue! I always check my links and they lead right where they should. If you should find a broken link that I missed, please let me know. But I was pretty bummed out. I work hard on this blog and when they rejected me, it was like an arrow to the heart. I can resubmit it, but I don't have the link to do that so I wrote Google for the link. Wish me luck!!
Thank you all for being such a good friend to me. I cherish each and every one of you!!!
God bless you!
Until next post,
Missy
Hope you all have been happy and well this past week. My husband and I have been trying very hard to get a sense of "normalcy" back into our lives. We haven't had much luck. We thought we had the nausea/vomiting problem licked, but it returned with a vengeance this morning. He was supposed to get a CT scan of his abdomen this morning, but he kept vomiting that I saw NO WAY he could keep the oral contrast down. So we called and rescheduled it for tomorrow at 9am. Check in at 8am. I hope and pray that tomorrow will be a better day. There's always hope!
As soon as he has the CT scan, the surgeon will call us and let us know what it said and what the "game plan" is from here. Will he keep the abdominal drain for two weeks or will he get rid of it in one week....that is the million dollar question. I don't want to remove it too soon, especially since it still is getting a little drainage out of it. Only about 20cc/day, but if that drain were gone, it would build up inside him and block the intestines again. We definitely don't want that!!!
Frankie went to the oncologist on Monday and he said that as soon as the CT scan is done, he will look it up and see where we should proceed with the Gleevec. He already has told us that he will start Frankie out at 400mg/day for awhile then increase it to his usual dosage of 400mg twice a day. We just don't want to take a chance that the tumor will return if he is off the Gleevec. He also had labs drawn to see if he is anemic still. The doc said that if he was, he could get an outpatient transfusion.
That pretty much is all that's going on so far. I still am just absolutely worn down from this past month of going back and forth to the hospital in this drastic heat. Yesterday I slept from 5pm to 7am the following day! I couldn't believe it!! My husband was right beside me, doing the same thing! We both are just so worn down....come on, B vitamins, kick in soon and give us some energy!!!! LOL!!
As you can see, I did a little redecorating of the blog. I hope you like it and it's easier to read. I signed up for Google AdSense (which is where you can earn money by the ads on your blog) and was rejected. First thing, they were looking at a totally different blog that wasn't even mine. Then, they said that it was too hard to read and I had broken links. So untrue! I always check my links and they lead right where they should. If you should find a broken link that I missed, please let me know. But I was pretty bummed out. I work hard on this blog and when they rejected me, it was like an arrow to the heart. I can resubmit it, but I don't have the link to do that so I wrote Google for the link. Wish me luck!!
Thank you all for being such a good friend to me. I cherish each and every one of you!!!
God bless you!
Until next post,
Missy
Thursday, August 5, 2010
Like Clockwork
Howdy-ho, everyone!
My poor husband! Every morning, like clockwork, he wakes up nauseated and vomits. Sometimes a lot, other times not so much. But it happens only in the morning and like clockwork. I've joked with him and told him maybe he is pregnant. LOL! I can't figure it out, though. It's not like he has a seven course meal before bed! Tonight I'll try giving him one of his nausea pills and a Prilosec and see what that does for the morning time vomit episodes. Other than the above, he is doing really well. He eats and drinks regular food now, no more pureed stuff of the hospital. He's been playing on the computer and watching TV. Last night he even smashed soda cans for the recycle...but, I told him to NOT do the whole bag quite yet or he might get sick. It's really hot out in the garage and that's where the "smasher" is, so I told him to take it easy. And he actually listened to me! Wow! :0)
Yesterday the home health nurse, Tim, came to do the initial visit. He's a really nice guy, very funny. He was ordered to come over for wound care (the abdominal drain and dressings), but today we see the surgeon and he probably will remove the drain. I hated to see Tim go through the mountains of paperwork (whoever works in Medicare must get paid by the word...those documents Tim filled out were endless!!) if he was going to get rid of the drain today, but orders are orders. Tim said that if the drain was removed, great. He would stop by on Friday to make sure we were OK and then he would come some time next week. That sounded like a good plan. Tim said that everything looked great. The abdominal drain is only draining about 20cc's of bloody fluid a day and the dressing is still intact. No signs of infection. Tim couldn't believe Frankie had been through so much....and he really is a pretty healthy guy. Not like me, who has a whole compilation of medical problems! Before the surgery, he only had the GIST and seasonal allergies. That's it. You need a whole notebook to record my issues!!!
On Monday we go to the oncologist to discuss what we do next. Go back on the Gleevec? Full dose or half dose? Or NO dose? I feel really uncomfortable with him going off it completely. It's kind of like a security blanket that the tumor they couldn't get seven years ago will stay dead if he continues the Gleevec. But it WOULD be nice if he didn't have to take it, his legs wouldn't hurt so badly and he wouldn't need the narcotics, probably. He hasn't taken it since before the surgery and his legs are great. No more pain there - it's all in the abdomen from the surgery. And even that is lessening now. BUT, when we lived in Tucson and saw a GIST specialist from the U of A, he said that when he took a patient off Gleevec, the tumor not only returned, but returned with a vengeance! So we definitely don't need that! So it will be interesting on Monday to see what the oncologist has to say about this.
Well, I should start getting ready to take my hubby to the surgeon. I'm doing OK, not the greatest, but OK. My right knee is giving me problems now and the fibro is in its element inside my body, with all the drama of my life! It literally feeds off of stress and little sleep. Even though NOW is OK, I'm paying for the past month of no sleep and worry over my husband. Hopefully, I'm at the end of the flare-up. God, I really hope!!!
I'm glad the appointment is early, so we get get out and get back before the bad heat starts rolling in. We've had "excessive" heat warnings all week and daily temps of 105-110's. The sun is like a hot little orb in the sky, beaming down on all of us, sharing its warmth and misery!! LOL!
Hope you all have a great day and weekend. Another week has rolled around....where does the time go?
God bless you all!!
Until next post,
Missy
My poor husband! Every morning, like clockwork, he wakes up nauseated and vomits. Sometimes a lot, other times not so much. But it happens only in the morning and like clockwork. I've joked with him and told him maybe he is pregnant. LOL! I can't figure it out, though. It's not like he has a seven course meal before bed! Tonight I'll try giving him one of his nausea pills and a Prilosec and see what that does for the morning time vomit episodes. Other than the above, he is doing really well. He eats and drinks regular food now, no more pureed stuff of the hospital. He's been playing on the computer and watching TV. Last night he even smashed soda cans for the recycle...but, I told him to NOT do the whole bag quite yet or he might get sick. It's really hot out in the garage and that's where the "smasher" is, so I told him to take it easy. And he actually listened to me! Wow! :0)
Yesterday the home health nurse, Tim, came to do the initial visit. He's a really nice guy, very funny. He was ordered to come over for wound care (the abdominal drain and dressings), but today we see the surgeon and he probably will remove the drain. I hated to see Tim go through the mountains of paperwork (whoever works in Medicare must get paid by the word...those documents Tim filled out were endless!!) if he was going to get rid of the drain today, but orders are orders. Tim said that if the drain was removed, great. He would stop by on Friday to make sure we were OK and then he would come some time next week. That sounded like a good plan. Tim said that everything looked great. The abdominal drain is only draining about 20cc's of bloody fluid a day and the dressing is still intact. No signs of infection. Tim couldn't believe Frankie had been through so much....and he really is a pretty healthy guy. Not like me, who has a whole compilation of medical problems! Before the surgery, he only had the GIST and seasonal allergies. That's it. You need a whole notebook to record my issues!!!
On Monday we go to the oncologist to discuss what we do next. Go back on the Gleevec? Full dose or half dose? Or NO dose? I feel really uncomfortable with him going off it completely. It's kind of like a security blanket that the tumor they couldn't get seven years ago will stay dead if he continues the Gleevec. But it WOULD be nice if he didn't have to take it, his legs wouldn't hurt so badly and he wouldn't need the narcotics, probably. He hasn't taken it since before the surgery and his legs are great. No more pain there - it's all in the abdomen from the surgery. And even that is lessening now. BUT, when we lived in Tucson and saw a GIST specialist from the U of A, he said that when he took a patient off Gleevec, the tumor not only returned, but returned with a vengeance! So we definitely don't need that! So it will be interesting on Monday to see what the oncologist has to say about this.
Well, I should start getting ready to take my hubby to the surgeon. I'm doing OK, not the greatest, but OK. My right knee is giving me problems now and the fibro is in its element inside my body, with all the drama of my life! It literally feeds off of stress and little sleep. Even though NOW is OK, I'm paying for the past month of no sleep and worry over my husband. Hopefully, I'm at the end of the flare-up. God, I really hope!!!
I'm glad the appointment is early, so we get get out and get back before the bad heat starts rolling in. We've had "excessive" heat warnings all week and daily temps of 105-110's. The sun is like a hot little orb in the sky, beaming down on all of us, sharing its warmth and misery!! LOL!
Hope you all have a great day and weekend. Another week has rolled around....where does the time go?
God bless you all!!
Until next post,
Missy
Friday, July 30, 2010
NIGHTMARE
If I had only one word I could use to sum up the last two days, it would definitely be NIGHTMARE. What should have been the happiest day (or one of them, at least!) of our life has turned into one living nightmare. My husband was released from the hospital July 27th after a one month plus hospital stay after having surgery to remove an arterio-venous malformation in his intestine. As you all know, he ran into many complications, hence the lengthy hospital stay. Well, on the day of his release, his blood pressure was very low. I'm talking in the toilet low. The nurse had him lay, sit and stand while she took various blood pressures and the good news was there wasn't too much of a change when he changed positions. The bad news remained that his pressure just was too low. The nurse stated she would hold his Lopressor (a beta-blocker for the heart that lowers pulse and blood pressure) and see what happens. He was placed on it in the first place because he has chronic atrial fibrillation and was taking Atenolol at home, but they changed it to this Lopressor because his heart rate during hospitalization was in the 130's. Normal is 60-100 for adults. His blood pressure range was 80's/40's and normal for adults is 130/80. So you can see where I was very worried over his numbers. But, the hospital wasn't too concerned and sent him home anyway. I just thought we'd pump him full of liquids, feed him well and hold any kind of blood pressure medication. I don't care that his discharge instructions said to take them!!
He was OK that night, and slept most of the night. I couldn't sleep, I was too busy worrying about my husband. He's such a trooper, I've been taking his blood pressure so much you can see the cuff indentation in his wrist...I have one of those units that fits on your wrist and takes the pressure that way. Very nice unit. The following day, the 28th, started out with a bang and ended that way, too. My husband had taken his Gleevec (cancer med) by mistake on an empty stomach so a few hours later, he's in the bathroom praying to the porcelin god! He threw up so much, I think it was coming clear down from his toes. He vomited about three separate times and then that stopped in the afternoon. Whew, we thought, that is over. No more taking the Gleevec on an empty stomach! He just was confused, I think, and fatigued after being in the hospital for so long. So I'm "helping" him with dispensing his medications for awhile until he gets back to "normal." He knew better than to take that Gleevec on an empty stomach, he's only been taking it the past 7 years!
We get through the early evening OK and then BAM! He starts shaking and having severe chills. I check his temp and it's 101.4. He also was draining quite a bit from his JP drain in his abdomen. The area didn't look infected or feel warm. This temp had to be coming from somewhere! And then his BP got really low again. My mother-in-law and I were up all night with him, stuffing him full of gatorade (which he hates but needed because of the electrolytes), sandwiches, water, milk, soda and anything we could think of to help get his blood pressure up and circulating inside his body. By 10am this morning, his blood pressure was 71/45 and we had done all we could. The ibuprofen I gave him for his fever worked and his temp was 97.3. It was hospital time, though, with that blood pressure. So I packaged everything up-my blue bag that I had received from the hospital when Frankie was very first admitted because I was his PAL, which is a program where patients can choose one person to act as his liason and stay with him for as long as needed to comfort him. I even received a pin and a discount in the cafe and cafeteria in the hospital. Anyway, I put my book in there, a few sandwiches and drinks for us as you just never know how long you will be sitting there! I've been to a lot of ER's where you wait a good four hours to even be seen! So I came prepared!
We get down to the ER and everyone was so incredibly sweet there. We had only a 10 to 15 minute wait and he was taken back to a room and they started an IV to give him fluids and he also had labs and blood and urine cultures taken. He also had an X-ray of his stomach and pelvis because last night, he was so dizzy, he fell in our carpeted hallway and got a nasty abrasion to his left arm. No other injuries that we could see outwardly, anyway. And he didn't hurt his head with the fall. I did tell the doctor about the fall, though, so she could examine my hubby more thoroughly, especially his head. But lo and behold, all the tests and X-rays came back as normal and they were shipping him home with a prescription for an antibiotic (Augmentin) and with the instructions to get a hold of his surgeon tomorrow. His BP when we left was a whopping 93/47. I guess that's the new norm now as I couldn't get anyone else excited about it except for me and my husband!
When we were going to the car, the wind really started to whip up and we were getting some major monsoon activity going on. I DID pray for rain, but not NOW! I wanted to be at home when the skies opened up and water poured down from the clouds above! But no, we were pounded with rain all the way to the pharmacy and then to home. Frankie said he was feeling better and ate a good meal of soup and English muffins with raisons. Then he went and laid on the bed for awhile until it was his turn to use the computer (we share a desktop). He was doing OK until just a little bit ago when he came into the bedroom just shaking again. This time he had no high temp, it was 97.8. I gave him some ibuprofen just in case it was trying to creep up. I wasn't crazy enough to do a BP....I just couldn't bear anymore bad news at this point!!!!
I am just so frazzled and frustrated and aggravated. Why us all the time? Why can't we have a normal life where you go in for surgery and come out the same week with NO complications? My mom was like this, too. All her surgeries ended in post-op infections that led to further surgeries and extreme pain. Just once....just once I'd like NO complications after EVERYTHING we do!!! ARGHHHHHHHHHH!
There, I feel better with getting that off my chest. I feel like crap myself. I'm so exhausted that I'm BEYOND sleep. I feel like I've got my candle lit at both ends that are fast approaching the middle of the candle!! I find myself being short-tempered and irritable at anything and everybody. My joints are on fire and my muscles are stretched beyond their limits. I've had to take more medication than I'd like just to get at least a few hours of sleep. I just don't know what to do anymore and that is such a helpless feeling!! So I continue praying to God that He will help us all through this rough patch.
Frankie is still sleeping, so I guess that's a good sign. No more shaking, so the ibuprofen must have helped. I started making all his post-op appointments, August is slowly booking up and we haven't even ended July yet! Thank God we have a car now. I remember this time LAST year when we had no car and had to shoot across town to our appointments in a taxi paid for by our health insurance. I'm grateful, of course, they covered that. But nothing is better than having your own set of wheels and we are so in love with the car we selected. My husband found it off of Craig's list and just at the right time. It's a 2000 Toyota Camry, but it was taken such good care of that it looks and runs brand new. It's a comfortable riding car and you don't feel every bump in the road. I like that, as I don't like cars that you can feel every joint-jabbing bump in the road!!
Okay, I'm gonna end this post and go check on Frankie. Thank you for letting me rant and rave for awhile. It did help and I feel a lot better, just getting my feelings out on paper. I think that's why I love writing so much. I'll end this post with another one of my poems written long ago. Hope you enjoy! Have a blessed weekend!!
Until next post,
Missy
Along The Road
Floating so freely
With not a care
Across the road and it's gone
Not paying attention to what's fair.
It doesn't matter
It just leaves
Not turning to hear senseless chatter.
It makes not one friend
For it never stays
It had no beginning so how can it have an end?
It moves from place to place,
A drifter-and a proud one
An art done well,
An art done with grace.
Floating so freely, not carrying one load-
It loves life, for it doesn't
Have to live it.
It drifts along,
This leaf hurrying along the road.
He was OK that night, and slept most of the night. I couldn't sleep, I was too busy worrying about my husband. He's such a trooper, I've been taking his blood pressure so much you can see the cuff indentation in his wrist...I have one of those units that fits on your wrist and takes the pressure that way. Very nice unit. The following day, the 28th, started out with a bang and ended that way, too. My husband had taken his Gleevec (cancer med) by mistake on an empty stomach so a few hours later, he's in the bathroom praying to the porcelin god! He threw up so much, I think it was coming clear down from his toes. He vomited about three separate times and then that stopped in the afternoon. Whew, we thought, that is over. No more taking the Gleevec on an empty stomach! He just was confused, I think, and fatigued after being in the hospital for so long. So I'm "helping" him with dispensing his medications for awhile until he gets back to "normal." He knew better than to take that Gleevec on an empty stomach, he's only been taking it the past 7 years!
We get through the early evening OK and then BAM! He starts shaking and having severe chills. I check his temp and it's 101.4. He also was draining quite a bit from his JP drain in his abdomen. The area didn't look infected or feel warm. This temp had to be coming from somewhere! And then his BP got really low again. My mother-in-law and I were up all night with him, stuffing him full of gatorade (which he hates but needed because of the electrolytes), sandwiches, water, milk, soda and anything we could think of to help get his blood pressure up and circulating inside his body. By 10am this morning, his blood pressure was 71/45 and we had done all we could. The ibuprofen I gave him for his fever worked and his temp was 97.3. It was hospital time, though, with that blood pressure. So I packaged everything up-my blue bag that I had received from the hospital when Frankie was very first admitted because I was his PAL, which is a program where patients can choose one person to act as his liason and stay with him for as long as needed to comfort him. I even received a pin and a discount in the cafe and cafeteria in the hospital. Anyway, I put my book in there, a few sandwiches and drinks for us as you just never know how long you will be sitting there! I've been to a lot of ER's where you wait a good four hours to even be seen! So I came prepared!
We get down to the ER and everyone was so incredibly sweet there. We had only a 10 to 15 minute wait and he was taken back to a room and they started an IV to give him fluids and he also had labs and blood and urine cultures taken. He also had an X-ray of his stomach and pelvis because last night, he was so dizzy, he fell in our carpeted hallway and got a nasty abrasion to his left arm. No other injuries that we could see outwardly, anyway. And he didn't hurt his head with the fall. I did tell the doctor about the fall, though, so she could examine my hubby more thoroughly, especially his head. But lo and behold, all the tests and X-rays came back as normal and they were shipping him home with a prescription for an antibiotic (Augmentin) and with the instructions to get a hold of his surgeon tomorrow. His BP when we left was a whopping 93/47. I guess that's the new norm now as I couldn't get anyone else excited about it except for me and my husband!
When we were going to the car, the wind really started to whip up and we were getting some major monsoon activity going on. I DID pray for rain, but not NOW! I wanted to be at home when the skies opened up and water poured down from the clouds above! But no, we were pounded with rain all the way to the pharmacy and then to home. Frankie said he was feeling better and ate a good meal of soup and English muffins with raisons. Then he went and laid on the bed for awhile until it was his turn to use the computer (we share a desktop). He was doing OK until just a little bit ago when he came into the bedroom just shaking again. This time he had no high temp, it was 97.8. I gave him some ibuprofen just in case it was trying to creep up. I wasn't crazy enough to do a BP....I just couldn't bear anymore bad news at this point!!!!
I am just so frazzled and frustrated and aggravated. Why us all the time? Why can't we have a normal life where you go in for surgery and come out the same week with NO complications? My mom was like this, too. All her surgeries ended in post-op infections that led to further surgeries and extreme pain. Just once....just once I'd like NO complications after EVERYTHING we do!!! ARGHHHHHHHHHH!
There, I feel better with getting that off my chest. I feel like crap myself. I'm so exhausted that I'm BEYOND sleep. I feel like I've got my candle lit at both ends that are fast approaching the middle of the candle!! I find myself being short-tempered and irritable at anything and everybody. My joints are on fire and my muscles are stretched beyond their limits. I've had to take more medication than I'd like just to get at least a few hours of sleep. I just don't know what to do anymore and that is such a helpless feeling!! So I continue praying to God that He will help us all through this rough patch.
Frankie is still sleeping, so I guess that's a good sign. No more shaking, so the ibuprofen must have helped. I started making all his post-op appointments, August is slowly booking up and we haven't even ended July yet! Thank God we have a car now. I remember this time LAST year when we had no car and had to shoot across town to our appointments in a taxi paid for by our health insurance. I'm grateful, of course, they covered that. But nothing is better than having your own set of wheels and we are so in love with the car we selected. My husband found it off of Craig's list and just at the right time. It's a 2000 Toyota Camry, but it was taken such good care of that it looks and runs brand new. It's a comfortable riding car and you don't feel every bump in the road. I like that, as I don't like cars that you can feel every joint-jabbing bump in the road!!
Okay, I'm gonna end this post and go check on Frankie. Thank you for letting me rant and rave for awhile. It did help and I feel a lot better, just getting my feelings out on paper. I think that's why I love writing so much. I'll end this post with another one of my poems written long ago. Hope you enjoy! Have a blessed weekend!!
Until next post,
Missy
Along The Road
Floating so freely
With not a care
Across the road and it's gone
Not paying attention to what's fair.
It doesn't matter
It just leaves
Not turning to hear senseless chatter.
It makes not one friend
For it never stays
It had no beginning so how can it have an end?
It moves from place to place,
A drifter-and a proud one
An art done well,
An art done with grace.
Floating so freely, not carrying one load-
It loves life, for it doesn't
Have to live it.
It drifts along,
This leaf hurrying along the road.
Sunday, May 30, 2010
Reflections
Hello! I'll just jump right in by saying that my husband finally got a bit of good news yesterday when we visited the new surgeon in Scottsdale. I really liked him-he's young, aggressive and knew all about Frankie's case because his oncologist had been calling him all week to fill him in on the specifics. Because these tumors have a tendency to be very quick in growing when they recur, I'm so glad that they are not wasting any time with getting him treated. The game plan is he will have a test next week-on Thursday or Friday-to check his stomach and see what is in there. We are hoping it is just a blob of undigested contrast (ewe!) as opposed to a tumor. If it IS a tumor, then when he is in surgery for his intestine, they will remove the tumor and part of his stomach at that time. You are probably asking yourself at this point, "where's the good news?" The good news is that Frankie's oncologist doesn't believe the tumor in his intestine has spread to ANYTHING else. Which makes it very easy to take care of with surgical removal and continue the Gleevec. If it had spread, then he more than likely would have been switched from Gleevec to the other drug, Sutent, which has a list of side effects that would stretch the Great Wall of China! The surgeon told us that Frankie's surgery would be probably in two weeks. I will be so glad-and so will Frankie!-to get this over with.
I was looking through some pictures of my family today and I got into a real reflective mood. I'm going to be turning 40 next month and what have I done with my life? Sure, I studied hard in school and graduated with honors from nursing school in 1993 and worked hard at whatever job I had for a solid 14 years. I managed to overcome my speech impediment (I went to a training course for stutterers in Norfolk, VA in 1999 and I have a fluency rate of about 90% now! So if you know of anyone in need of such a course, email me and I will give you the details) AND I worked with the fibromyalgia going in and out of flare-ups. Then the RA diagnosis came in 2004, but we caught that so early, no damage has been done so far. I take Arava for it and I am in remission for the RA.
Despite all that I have overcome, here I sit, unemployed, I can't work because the slipped discs in my back hurt so bad and are sending shooting pains down to my toes of both feet and my feet are so swollen, you can see the line imprint on my skin from my socks! I take enough morphine to choke a horse and besides that, I take 22 other medications to get me through the day. We are living with my husband's folks (which I am so grateful for all they have done for us-I love them to pieces!) it's just that Frankie and I want to get our stuff from San Antonio and move into our own apartment and get on with life. Every time we think we are on top of things, something happens. We can't save very much money, because Social Security won't give me what I deserve and we just have my husband's disability check to go on. Take away our monthly expenses and there isn't too much left!
I don't mean to go on and on. Forgive me. I AM grateful for all that God has given us and I can't say enough how much I appreciate Frankie's family for taking me (and my dad, for awhile until he screwed up and was booted back to Michigan!) on as one of their own. I've never had siblings, so it's so much fun to think of my sister-in-law Barbara as my real sister. She IS my real sister! I feel I can talk to her about anything, as with my mother-in-law. My husband's brother Doug lives in Wisconsin, so we aren't too close with him due to the distance. I also miss my old life, too. I miss my mom and my dad and all the fun times we had. I'm so glad I took a lot of pictures of all our adventures and when we would goof around at home. I'm glad I have every single one of them to cherish forever-because they are all I have. My mom is gone forever and my dad.....he's a whole story in himself. I will talk about that in later blogs. He has a lot of problems and I wish him well in Michigan, I truly do. It's just that we can't live together anymore because he is a user and I can't deal with that anymore. I grew up knowing my dad had a problem with prescription drugs and now that I have a life WITHOUT having to worry about if he is going to throw a fit because the pharmacy won't fill his prescription because it's too soon, I don't want to go back to that old life. Yet I miss certain aspects of it. I'm confused! And just very depressed because I gained a lot of weight, so I can't have my back surgery until I lose that weight, so I can't work until I lose weight to have the surgery so I can work again! I'm just in one big vicious cycle that has my head spinning so fast, I'm dizzy.
Looking at those pictures of happier times with my mom and dad has made me very nostalgic. I wish I felt like I did back then, only back then I took it all for granted. Whoever said that "youth is wasted on the young" was very wise. Oh, how true that is!! I've learned one big lesson from all my reflecting and it's this: don't ever take for granted the things and people in your life. Because one day, when the fun is over and it's time for everyone to go home, if you took it for granted then that time of your life is gone forever. Live for today and take time to stop and smell the roses. But don't smell too much because if you are allergic or have hay fever, then boy will you regret that! LOL! I know, stupid joke. I have a lot of them!!!
Hope you all are happy and well and Happy Memorial day on Monday. Thank you to all who have served our country and lost their lives for our freedom. I don't ever want to take THAT for granted either.
Until next post,
Missy
I was looking through some pictures of my family today and I got into a real reflective mood. I'm going to be turning 40 next month and what have I done with my life? Sure, I studied hard in school and graduated with honors from nursing school in 1993 and worked hard at whatever job I had for a solid 14 years. I managed to overcome my speech impediment (I went to a training course for stutterers in Norfolk, VA in 1999 and I have a fluency rate of about 90% now! So if you know of anyone in need of such a course, email me and I will give you the details) AND I worked with the fibromyalgia going in and out of flare-ups. Then the RA diagnosis came in 2004, but we caught that so early, no damage has been done so far. I take Arava for it and I am in remission for the RA.
Despite all that I have overcome, here I sit, unemployed, I can't work because the slipped discs in my back hurt so bad and are sending shooting pains down to my toes of both feet and my feet are so swollen, you can see the line imprint on my skin from my socks! I take enough morphine to choke a horse and besides that, I take 22 other medications to get me through the day. We are living with my husband's folks (which I am so grateful for all they have done for us-I love them to pieces!) it's just that Frankie and I want to get our stuff from San Antonio and move into our own apartment and get on with life. Every time we think we are on top of things, something happens. We can't save very much money, because Social Security won't give me what I deserve and we just have my husband's disability check to go on. Take away our monthly expenses and there isn't too much left!
I don't mean to go on and on. Forgive me. I AM grateful for all that God has given us and I can't say enough how much I appreciate Frankie's family for taking me (and my dad, for awhile until he screwed up and was booted back to Michigan!) on as one of their own. I've never had siblings, so it's so much fun to think of my sister-in-law Barbara as my real sister. She IS my real sister! I feel I can talk to her about anything, as with my mother-in-law. My husband's brother Doug lives in Wisconsin, so we aren't too close with him due to the distance. I also miss my old life, too. I miss my mom and my dad and all the fun times we had. I'm so glad I took a lot of pictures of all our adventures and when we would goof around at home. I'm glad I have every single one of them to cherish forever-because they are all I have. My mom is gone forever and my dad.....he's a whole story in himself. I will talk about that in later blogs. He has a lot of problems and I wish him well in Michigan, I truly do. It's just that we can't live together anymore because he is a user and I can't deal with that anymore. I grew up knowing my dad had a problem with prescription drugs and now that I have a life WITHOUT having to worry about if he is going to throw a fit because the pharmacy won't fill his prescription because it's too soon, I don't want to go back to that old life. Yet I miss certain aspects of it. I'm confused! And just very depressed because I gained a lot of weight, so I can't have my back surgery until I lose that weight, so I can't work until I lose weight to have the surgery so I can work again! I'm just in one big vicious cycle that has my head spinning so fast, I'm dizzy.
Looking at those pictures of happier times with my mom and dad has made me very nostalgic. I wish I felt like I did back then, only back then I took it all for granted. Whoever said that "youth is wasted on the young" was very wise. Oh, how true that is!! I've learned one big lesson from all my reflecting and it's this: don't ever take for granted the things and people in your life. Because one day, when the fun is over and it's time for everyone to go home, if you took it for granted then that time of your life is gone forever. Live for today and take time to stop and smell the roses. But don't smell too much because if you are allergic or have hay fever, then boy will you regret that! LOL! I know, stupid joke. I have a lot of them!!!
Hope you all are happy and well and Happy Memorial day on Monday. Thank you to all who have served our country and lost their lives for our freedom. I don't ever want to take THAT for granted either.
Until next post,
Missy
Thursday, May 27, 2010
My Day As A Lab Rat!
Whew, I'm glad today is over with! I have never been shuffled to and from so many tests in my entire career of having fibromyalgia! Today was the beginning of the resting phase of my cardiac stress test. Very appropriate name, being as I got very "restful" as I was inside this machine with a camera that took pictures of my heart from every conceivable angle. The technician was in another room with another patient and it was quiet and I had a nice, snuggly blanket placed over me (due to it felt like a morgue in there, it was so icy cold!) and I didn't sleep very well last night, so I did the only natural thing...I fell asleep! The tech then rudely (LOL! He was very nice and explained the whole procedure before he did anything) came and woke me up. Let me back up a bit-before I had the resting portion of the test, I had an echocardiogram of my heart, which was a piece of cake. (Mmmm...speaking of cake.....NO, I cannot have cake! I fight with myself often, so don't mind me!) They even had a gown that fit me completely...my butt wasn't sticking out for all to see! Everyone was so sweet and put me at ease, that it actually was a very enjoyable day. If you have to spend it doing tests, it's always nice to have the techs be good to you. I've had plenty of bad experiences (as I'm sure we ALL have) where you could tell the person didn't like their job by the way they interact with their patients. No smiles, no putting one at ease, no humor. Now, I realize that not everything is funny, but you should laugh at those rare times when things ARE funny! It goes along the line of taking time to smell the roses. Anyway, Tony, my technician, took the pictures of my heart after the echo. Tony is fabulous....I've never met anyone as personable as he. He is also quick & efficient. I was the first patient in this morning at 7:15am and he worked on me, then more people trickled in and he had us all prepared for our test within a half hour. His time management skills are outstanding!
I had to laugh because I met the most interesting people this morning as we were waiting in the nuclear med waiting area. This one guy was a "hefty" person like myself and he was in for the same test-chemical stress test. He was telling me that when they scheduled him initially, they said they would have to do him at the Deer Valley location (which is where we were) due to his HEIGHT and....ummmm, weight. We got to laughing so hard. The guy asked the receptionist what is height had to do with anything and she couldn't answer him. I think she just was trying to be delicate about weight issues....but you gotta admit, that is just plain hysterical with how she put it. I've never heard of a test that if you are too short or too tall you couldn't have it done at certain locations. Anyway, it was good to get out of the house for awhile and meet some new people. Because my physical abilities are declining so rapidly, I can't get out a lot anymore. I need that damn walker and I hate having to put my poor husband through having to get it out of the trunk and set it up. But he does it every time with not one complaint. And he helps me up curbs and rough terrain (like stones) and is always by my side. Couldn't ask for a better husband than my Frankie! He is there for me, as I am for him.
After the resting stress test, I had ONE more thing to do: an "ABI" test, which is believe stands for "ankle brachial index." My nursing skills are a bit rusty after two years of non-use, so trying to remember these things are hard. Plus I was never a cardiac nurse anyway. I went into another room with another technician and she had me lay on a hard table while she proceeded to put blood pressure cuffs on both arms and ankles. Then she got readings from all four areas and then used a doppler to check my pulses. I was so embarrassed with how swollen my feet were! My pulses sounded nice and strong. Then, she had me stand up and stand on tippy-toes and then lower down and then back up for 50 times. Well, my legs are the crappiest things on me and I knew I couldn't do fifty. I was right. I could barely do 30 and she said that was OK. My calves go so tight, I though the muscles would split right out of my legs! I had to lay back down and she got the reading yet again from the cuffs. When she blew the cuff up on my calves, it took all I had-and stuff I didn't even KNOW I had-to NOT scream. That hurt soooo bad!!!! I don't know if my fellow "fibromites" have this or not, but my calves get really hard and crampy and I can't walk on them for several minutes, until the cramp leaves. It's just miserable!
I could get my husband out of the waiting room at this point and have him join me in one of the exam rooms for the evaluation of the ABI test. I was surprised they'd do that so quickly. I finally got GOOD news for a change. My arterial flow is very strong and there didn't seem to be a problem she could see with it. She did say that my venous return might be weak, or the valves in the veins aren't working like they should, therefore causing the swelling in both legs. We shall see.
We went home after that and I felt like I'd been through WW3. I was so tired, I got into the house, plopped my purse down on the table, and went to bed for about 4 hours. I don't know why I am so tired all the time! The tests weren't that hard...you'd think my body thought it climbed Mt. Everest, for Heaven's sake! I guess I'm not getting that good REM sleep I need. Maybe tonight I can sleep better. I'm getting very tired right now as I took all my night pills and they are starting to work. I can't take ANYTHING in the morning, including my MS Contin (yikes! I'm going to be hurtin' in the morning!) until after the stress test is over. Tony told me to bring my meds and right after, I can take them. I can't even have water before the test! I'm gonna be a bear in the morning....no pills, no water, no breakfast. And I'll be injected with a medication to make my heart speed real fast. I hate that feeling!!! But, it's my last test and my follow-up with the cardio doc is June 11th. Hopefully all is well and I can have that lap-band procedure and lose enough weight to have back surgery. Oh, I hope so!!!!
Tomorrow afternoon is my husband's appt with the surgeon. We will see if surgery will remove the new tumor or not. I hope they can. It's small and not around major vessels like his original tumor is, so there's a good chance that surgery will do the trick. Question is, should he remain on the Gleevec or switch to the second line medication called "Sutent?" We shall see. Seems like all we ever do is sit around and wait, wait, wait. It gets really old and boring sometimes!!!!!
Okay, I think I'll close for tonight. I'm getting really tired and I hope this blog is still making sense! LOL....I sometimes say crazy things when I'm sleepy. I want to make sure I get enough rest for the "heart pumping" great time I'll have with the second part of the test tomorrow. Wish me luck, and my husband as well. Hope its good news all around.
Be happy & safe, my friends!
Love ya!
Missy
I had to laugh because I met the most interesting people this morning as we were waiting in the nuclear med waiting area. This one guy was a "hefty" person like myself and he was in for the same test-chemical stress test. He was telling me that when they scheduled him initially, they said they would have to do him at the Deer Valley location (which is where we were) due to his HEIGHT and....ummmm, weight. We got to laughing so hard. The guy asked the receptionist what is height had to do with anything and she couldn't answer him. I think she just was trying to be delicate about weight issues....but you gotta admit, that is just plain hysterical with how she put it. I've never heard of a test that if you are too short or too tall you couldn't have it done at certain locations. Anyway, it was good to get out of the house for awhile and meet some new people. Because my physical abilities are declining so rapidly, I can't get out a lot anymore. I need that damn walker and I hate having to put my poor husband through having to get it out of the trunk and set it up. But he does it every time with not one complaint. And he helps me up curbs and rough terrain (like stones) and is always by my side. Couldn't ask for a better husband than my Frankie! He is there for me, as I am for him.
After the resting stress test, I had ONE more thing to do: an "ABI" test, which is believe stands for "ankle brachial index." My nursing skills are a bit rusty after two years of non-use, so trying to remember these things are hard. Plus I was never a cardiac nurse anyway. I went into another room with another technician and she had me lay on a hard table while she proceeded to put blood pressure cuffs on both arms and ankles. Then she got readings from all four areas and then used a doppler to check my pulses. I was so embarrassed with how swollen my feet were! My pulses sounded nice and strong. Then, she had me stand up and stand on tippy-toes and then lower down and then back up for 50 times. Well, my legs are the crappiest things on me and I knew I couldn't do fifty. I was right. I could barely do 30 and she said that was OK. My calves go so tight, I though the muscles would split right out of my legs! I had to lay back down and she got the reading yet again from the cuffs. When she blew the cuff up on my calves, it took all I had-and stuff I didn't even KNOW I had-to NOT scream. That hurt soooo bad!!!! I don't know if my fellow "fibromites" have this or not, but my calves get really hard and crampy and I can't walk on them for several minutes, until the cramp leaves. It's just miserable!
I could get my husband out of the waiting room at this point and have him join me in one of the exam rooms for the evaluation of the ABI test. I was surprised they'd do that so quickly. I finally got GOOD news for a change. My arterial flow is very strong and there didn't seem to be a problem she could see with it. She did say that my venous return might be weak, or the valves in the veins aren't working like they should, therefore causing the swelling in both legs. We shall see.
We went home after that and I felt like I'd been through WW3. I was so tired, I got into the house, plopped my purse down on the table, and went to bed for about 4 hours. I don't know why I am so tired all the time! The tests weren't that hard...you'd think my body thought it climbed Mt. Everest, for Heaven's sake! I guess I'm not getting that good REM sleep I need. Maybe tonight I can sleep better. I'm getting very tired right now as I took all my night pills and they are starting to work. I can't take ANYTHING in the morning, including my MS Contin (yikes! I'm going to be hurtin' in the morning!) until after the stress test is over. Tony told me to bring my meds and right after, I can take them. I can't even have water before the test! I'm gonna be a bear in the morning....no pills, no water, no breakfast. And I'll be injected with a medication to make my heart speed real fast. I hate that feeling!!! But, it's my last test and my follow-up with the cardio doc is June 11th. Hopefully all is well and I can have that lap-band procedure and lose enough weight to have back surgery. Oh, I hope so!!!!
Tomorrow afternoon is my husband's appt with the surgeon. We will see if surgery will remove the new tumor or not. I hope they can. It's small and not around major vessels like his original tumor is, so there's a good chance that surgery will do the trick. Question is, should he remain on the Gleevec or switch to the second line medication called "Sutent?" We shall see. Seems like all we ever do is sit around and wait, wait, wait. It gets really old and boring sometimes!!!!!
Okay, I think I'll close for tonight. I'm getting really tired and I hope this blog is still making sense! LOL....I sometimes say crazy things when I'm sleepy. I want to make sure I get enough rest for the "heart pumping" great time I'll have with the second part of the test tomorrow. Wish me luck, and my husband as well. Hope its good news all around.
Be happy & safe, my friends!
Love ya!
Missy
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FibromyWHAT? by Melissa Schranz is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.