Well, mark down another no good, very bad, truly awful day in the book of Q. I thought I had started to feel better last night but felt worse again this morning. Non-stop dry heaving is seriously not fun. On top of that my stoma seems to be kind of slimy and it looks like it's enlarging. Kind of like someone poured acid into it and the skin is melting, sloughing off in hunks. A very disturbing effect, let me tell you.
I still can't sleep either. I lay down, I think I fall asleep, but 20 minutes later I find myself staring at the clock thinking crap, only 20 minutes has gone by. And my whole body has tightened up like a bow string. I lay there and force myself to relax everything, I sink down into the mattress......20 minutes later I wake up and I'm a pretzel again. This has been going on all week now. No idea what's causing it.
Sent numerous e-mails to Mary over the weekend about how miserable I was. Made it very clear that I would not be keeping any appointments today. She had a heart attack. She sent the visiting nurse, Erika, over to see me. Erika convinced me to put my big girl pants on and at least go in to get hydrated. She said dehydration could be causing the continued nausea and dry heaving.
Took myself to the hospital. Figured out pretty quickly that I should have called my personal chauffeur today. It was bad. I took it slow and made sure not to kill anyone.
By the time I got there and got called into a back room I had had enough. I had told Erika earlier that not only was I feeling physically crappy but I wasn't holding up all that well mentally either. Well, I lost it at the hospital. Had myself a little meltdown. Ended up on a gurney with an IV stuck in me.
Turns out I was NOT dehydrated. Even though I hadn't been eating, I HAD been making sure to drink all weekend long and it turns out I did a good job at it. It was simply the meds that were making me feel so bad. They affect some patients more harshly than others.
Had a nice long conversation with Dr. Kim while I was laying there. It turns out that even though the average patient survives 10 months on these drugs, he's simply keeping his fingers crossed that he can get me through my cruise, motoring under my own power. Yikes! He said that I had pointed it out myself that the cancer is back to growing on my neck already. It's VERY aggressive. I agreed. He said that on my scan Dr. Miller had noted that you can't really tell if there's a recurrence of cancer in the head and neck or if it's surgical feedback as I had mentioned in a previous blog. Dr. Kim said that in one area you actually can tell that the cancer is back. He said there's a very clear tumor wrapped around the front of the inside of my stoma. Obviously if it gets big enough, it's going to block off my airway pretty darned quick and suffocate my ass. He's hoping that this one blast of Cisplatin was at least enough to shrink the hell out of that tumor for now so that I can go lay on a beach and soak up some sun. He said once I'm back from the cruise, it's just a crapshoot from there on out. I told him that was fine. I revamped my will. I'm happy with what I've accomplished as far as bucket list items. Now it's just a matter of one last visit with peeps I love to say goodbye, where it makes sense, anyway. Phew.
While I was at the hospital today I changed the bandage on my neck and one of the stitches let loose on the Allerderm. Yeah, doesn't look like any healing was going on down there. Still a big gaping wound in my neck. At least it's a healthy looking wound, if that makes any sense. It's not green or gray or black. It's healthy looking pink fleshy stuff. If I just keep it clean and covered for the next couple of months it should be okay. I'm getting cremated anyway so it's not like I have to try and look good for you people! ;-)
The bummer is that my little horde of Easter candy will go uneaten, at least by me. I'll leave it for Jamie to find. It will be a nice treat for him after he runs the Tough Mudder in July. He can put himself in a second candy coma courtesy of an Easter basket from me. Cuz you know, one Easter basket obviously just wasn't enough! LOL!
Allrighty, that's the update. Wanted to share my misery and the new tidbits I gleaned. Crap, I got a note from my Mom this week. She wants the baby scrapbook that she made for me. I have to figure out where I stashed that thing and get it sent off to her...........attic crawl space, cobwebs and all, here I come.........
Monday, April 28, 2014
Saturday, April 26, 2014
April 26
My doctors are driving me nuts. The last we spoke I was supposed to go in to see Mary on Monday and start treatment on Tuesday. Well, when I went in on Monday, Dr. Kim was laying in wait for me again. WTH? I guess he gave my situation a lot of thought over the weekend and it really sank in with him that this is it. That I'm not going in for any more surgery or radiation. He's the end of the line for me. That being the case, he decided that he thought we should do something more aggressive than this every 3 week thing that he had planned. I asked him what the point was, we know we can't cure it, we're not going to extend my life any, we're just trying to make things comfortable. He said actually he might be able to extend things. Oh great. Not what I want to hear. I don't think these medical people understand exactly how miserable it is to be sick 24/7 for years on end. And you know it's not getting better, it's just getting worse. Long story short. He changed my treatment plan. I went in and spent a good 8 hours getting stuff dripped into me on Tuesday and then I came home with a chemo pump pack for four days. It was just finally removed at 2:30 this afternoon. Worst four days of my life in quite some time. We will not be continuing on with this treatment. I'm still sick as a dog. Every time I start moving too much I start dry heaving. I've only eaten four cans of Jevity in the past four days. I've been trying to continue to syringe fluids as much as possible though. It's been seriously miserable though and this is not what I would call enhancing the quality of my life. So, back to the drawing board. Meanwhile, he said that studies show that patients on that specific medicine regime usually survive around 10 months. And it was really aggressive! So it sounds like if we switch back over to the every 3 week treatment plan, I'm likely to have quite a bit less than 10 months. So long as I have some energy and health for the cruise in a couple of weeks, I won't ask for much more than that.
That's about all I have to say on the cancer front. I'm in the process of doing what I call my swan song. My one last time for a bunch of things in life. Here's what I accomplished this week:
This past Wednesday I was still feeling okay, even with the chemo pack so I went to Stephanie and Tony's house. I made them a nice steak dinner to enjoy as a couple while I played with their daughter Addison (3yrs old? 4 yrs. old? I'm so bad with ages!) for a few hours in her room. I had an absolute blast! I had bought her some board games. Candyland, match game, etc. but she's still a little young. We ended up playing dolls and ponies and other fun stuff. She was trying really hard to grasp the concept of me not being able to talk and what was going on with my neck. At one point I needed a drink so she came out into the kitchen with me and watched me syringe some Gatorade which she observed very carefully. A little later on we were in the bedroom and I went to grab a tissue from my purse. She said "Oh, do you need that to cover the hole in your neck?". I looked at her, held the tissue up, and wiped my nose. She looked at me for a second and then started giggling. Even at that age she realized that she was being way too serious about the whole thing! Ha! Then we were playing horsies and she was telling me that one of the horses was injured so she had to put a splint on the horse. It turns out the horse hurt its neck which is where she had to splint it. Kids are awesome!
Last night the guys came over for one last poker game. It was fun. Unfortunately I was feeling pretty bad by then. I was subdued and things weren't as raunchy/rowdy as they can sometimes be. It couldn't have been that bad though because I actually won. Well, Brian and I won the first game. We didn't play it out because everyone was antsy to get the second game started so we simply split the pot. It meant $40 in my pocket though which rarely happens! Woo hoo!
Although it seems I don't even have to win to get money in my pocket. I always end up finding money thrown around my kitchen after poker games. I should have collected $30 for pizza and beer but I think I somehow ended up with $60! It's like the money mutates and multiplies as it sits on the kitchen counter somehow.
Speaking of money, I received a letter from the insurance company today about my long term disability. I was approved to receive some supplemental income from them on top of the social security disability. Still no sign of payment but I have an official letter saying I should be getting something. I also received a letter from Strong Hospital. They have approved me for 100% Charity Care. I guess that means any copays or other monetary amounts that my insurance didn't cover will be covered by the hospital itself. I thought that was really awesome of them. I was so worried about not being able to pay my mortgage and being booted to the street but it would seem the money thing worked out just fine. I'll be able to continue my lavish lifestyle through to the end. ;-)
Next weekend baby doll and I have tickets to see The Odd Couple at GEVA and then it's off to Atlantic City to walk the boardwalk and experience a well known national destination. I'm still slowly prepping for the cruise. I have a couple of tankinis on order from JC Penney's. My little white Skechers that I ordered arrived yesterday. I wanted a very versatile, very comfortable pair of shoes for the cruise. They are fabulous! Like walking on air and too cute for words. I ordered baby doll a pair of Skecher sandals too. They should be here Monday. So we're slowly getting ready.
I'm off to sit very quietly on the couch without moving too much. Nausea and dry heaving suck.
That's about all I have to say on the cancer front. I'm in the process of doing what I call my swan song. My one last time for a bunch of things in life. Here's what I accomplished this week:
This past Wednesday I was still feeling okay, even with the chemo pack so I went to Stephanie and Tony's house. I made them a nice steak dinner to enjoy as a couple while I played with their daughter Addison (3yrs old? 4 yrs. old? I'm so bad with ages!) for a few hours in her room. I had an absolute blast! I had bought her some board games. Candyland, match game, etc. but she's still a little young. We ended up playing dolls and ponies and other fun stuff. She was trying really hard to grasp the concept of me not being able to talk and what was going on with my neck. At one point I needed a drink so she came out into the kitchen with me and watched me syringe some Gatorade which she observed very carefully. A little later on we were in the bedroom and I went to grab a tissue from my purse. She said "Oh, do you need that to cover the hole in your neck?". I looked at her, held the tissue up, and wiped my nose. She looked at me for a second and then started giggling. Even at that age she realized that she was being way too serious about the whole thing! Ha! Then we were playing horsies and she was telling me that one of the horses was injured so she had to put a splint on the horse. It turns out the horse hurt its neck which is where she had to splint it. Kids are awesome!
Last night the guys came over for one last poker game. It was fun. Unfortunately I was feeling pretty bad by then. I was subdued and things weren't as raunchy/rowdy as they can sometimes be. It couldn't have been that bad though because I actually won. Well, Brian and I won the first game. We didn't play it out because everyone was antsy to get the second game started so we simply split the pot. It meant $40 in my pocket though which rarely happens! Woo hoo!
Although it seems I don't even have to win to get money in my pocket. I always end up finding money thrown around my kitchen after poker games. I should have collected $30 for pizza and beer but I think I somehow ended up with $60! It's like the money mutates and multiplies as it sits on the kitchen counter somehow.
Speaking of money, I received a letter from the insurance company today about my long term disability. I was approved to receive some supplemental income from them on top of the social security disability. Still no sign of payment but I have an official letter saying I should be getting something. I also received a letter from Strong Hospital. They have approved me for 100% Charity Care. I guess that means any copays or other monetary amounts that my insurance didn't cover will be covered by the hospital itself. I thought that was really awesome of them. I was so worried about not being able to pay my mortgage and being booted to the street but it would seem the money thing worked out just fine. I'll be able to continue my lavish lifestyle through to the end. ;-)
Next weekend baby doll and I have tickets to see The Odd Couple at GEVA and then it's off to Atlantic City to walk the boardwalk and experience a well known national destination. I'm still slowly prepping for the cruise. I have a couple of tankinis on order from JC Penney's. My little white Skechers that I ordered arrived yesterday. I wanted a very versatile, very comfortable pair of shoes for the cruise. They are fabulous! Like walking on air and too cute for words. I ordered baby doll a pair of Skecher sandals too. They should be here Monday. So we're slowly getting ready.
I'm off to sit very quietly on the couch without moving too much. Nausea and dry heaving suck.
Saturday, April 19, 2014
April 19
Phew! I've been a busy girl over the past week!
So, I discovered a new lump on my neck. The same type of lump that started growing after surgery but before radiation last fall. The type of lump that Dr. Singh said was the cancer returning. I'm going to have to ask Dr. Kim if chemo will do anything about this lump or not. I don't want it to balloon up and become an eyesore.
I saw Dr. Kim last Monday. Actually, I saw his resident first. Normally that kind of gets on my nerves, that you have to spend 30-40 minutes with the resident before you can even see the doctor. But it actually worked in my favor this week. Dr. Kim and I seem slightly uncomfortable with each other. Convos are always a little stilted, and communication isn't easy. But his resident is a chipper little bird, always tweeting along. So, I bombarded her with questions. She deferred a lot of them to the doctor but I did get some stuff out of her. She pulled up my PET scan on the computer screen and showed me the spot on my lungs and the spot in the chest cavity on the other side. She then pointed out all of the recurrent cancer in my neck, jaw, and throat. I was like "What do you mean recurrent??". She said meaning my cancer had come back in all the areas they had operated on. Say what!? Dr. Miller hadn't mentioned that. At least I don't think he did. He said that if you take pictures too soon after a surgery, when things are still healing, then the PET scan tends to light up all over the place. So now I'm torn. Did he not mention it because he thinks it's just surgical feedback or did he not mention it because worrying about my lungs is quite enough...........
Anyway, I finally got to see Dr. Kim. He said we have three options. 1) Do another run of chemo. And he said it wasn't so much to extend my life any, he said it was to make my quality of life better. Keeping the tumors in my lungs shrunken will allow me to breath better, etc. 2) He started talking about some clinical trial that was going on. I immediately waved him off, I'm not interested in anything that sounds like work. or 3. Do nothing.
So, I went with option 1. He then gave me some paperwork to take home and examine. They are currently doing a study of cancer patient's genomes. They are then able to dictate what chemo drugs are likely to be most effective in helping to shrink the tumors. Unfortunately the study takes 30 days which means it's HUGELY expensive. Sometimes insurance covers it, sometimes it doesn't. So I sat on it for a day or two and then sent an email to his head nurse letting her know I'm going to skip it. I have no idea if my insurance would cover it or not and I don't think there's a way to find that out ahead of time. Getting surprised with an invoice for $20,000 3-4 months down the road is NOT something I want to invite into my life. Dr. Kim was really pressing me to do it. He hates being forced to use the same exact medications on every cancer patient that comes to him because he knows we're all different. Alas, I'm okay with taking a drug that was intended for the masses if it means more money to have some fun in the short term.
So I go in on Monday to have blood work done and to meet with Mary so she can brief me on what's going to go on again. Tuesday I start chemo, bright and early, at 8:00 AM. Supposedly there's two different drugs involved, one after another and the entire treatment will go for 5-6 hours. I then need to go back every 3 weeks to get a treatment. Although the first round is going to be pushed out to a 4 week cycle to accommodate the cruise I will be going on.
Yes, you heard that right, in just a few short weeks I will be laying on a sandy beach, someplace hot, with an incredible gorgeous man by my side. AHHHHHHHHHHH.
And before I even get that far, we'll be hopping in the car and heading to Atlantic City for a long weekend. How cool is that? I made an abbreviated bucket list and we've already pinged two things off my list! Woo hoo!
And as an added bonus for the Atlantic City trip, I'm going to be there the same weekend as a girlfriend of mine so we're going to hook up and do dinner one of the nights we're there. Other than that there's an aquarium, a Ripley's Believe It or Not Museum, we got tickets to see Wayne Brady, I read that the boardwalk is 4 miles long and a lot of people like to walk it and casino hop, there's a place called Steelpier that is a big amusement park. I can whip baby doll's butt at ski ball while we're there. It's going to be fun!
Today we hopped online and booked the excursions for our cruise. We're doing a walking tour in one of the ports, a beach/stingray experience in another port, and then a skyway tram at the last port. The tram thing is only an hour and then we're going to go it on our own with shopping and finding a beach. Get a little adventurous without having our hand held by the cruise line. I'll have to let you know how that goes.
So, I ran out of anti-depressants last weekend. I told Dr. Rob that now that I'm on Medicaid, scripts need to be pre-authorized. I have no idea what happened but I didn't end up getting more pills until Thursday. Not good. Sunday night I had night terrors. Yeah, not night mares mind you, but actual night terrors. It sucked!! Then I was so scared to go to sleep on Monday night that I ended up staying up the entire night. I spent the whole night researching cruises and making up a comparison spreadsheet for baby doll showing him what cruises I thought would be best for us. I finally fell asleep about 8:30 Tuesday morning until 3:00 in the afternoon. Messed up my schedule for a few days.
Wednesday night I was having baby doll's sister and BIL over for dinner along with his daughter, Jessica. Jess had just gone on a class trip to Baltimore and didn't have a chance to try crab cake's while she was there. That's just downright sacrilegious! So, baby doll was telling her how yummy MY crab cakes were and voila, a dinner was in the works. Then I started panicking. I've only made crab cakes once and it was like a year ago and honestly I don't remember them coming out all that good. Anywho, some of my guys from work were nice enough to come over Wednesday at lunch and do a taste test on the meal I was prepping to serve Wednesday night. I got some great feedback from them, made some tweaks to what I was doing, and dinner was a success. Woo hoo!
Last night we had tickets to Phantom of the Opera. First of all, I picked some really crappy seats. I couldn't see a damned thing. And every time I found a little line of sight to the stage, the lady in front of me moved her head and blocked my view. Was driving me nuts! Unfortunately, Friday was a bad day for me. I'm thinking it's because I started on the anti-depressants again on Thursday afternoon. The last time I started them I was nauseous and exhausted the entire next day which is pretty much how I felt yesterday. After trying to see something for the first 15 minutes of the show I finally gave up and fell asleep. I slept through the whole damn thing. That had to be one of the most expensive naps ever! On the bright side, baby doll said it was an excellent production. He said it's the one and only Broadway show that he's seen before and this production was better than the one he originally saw. He said the set decorations were incredible! So at least one of us got some enjoyment out of it. I have tickets to see The Odd Couple in a couple of weeks. Hopefully that one goes better for me.
I think that's been all the excitement this week. Baby doll started digging up the spot where my elevated garden is going to go. And my seedlings are looking strong and healthy. We were going to go buy the lumber today and finish digging up the sod but my honey bunny had to work all morning. It didn't seem fair to then make him run around shopping for MY project. Plus I'm still not feeling well. I'm not nauseous or feverish anymore though. Now I have a really bad sore throat and my jaw keeps having sharp pains shooting through it. If it's not one thing, it's another!
The doorbell rang a couple of hours ago. It was the neighbor from across the street. She was carrying Ethan. She wanted to know if he was ours because if not, she was going to adopt him. She said he's so sweet and friendly. <sigh> That cat is going to be the death of me. I don't remember if I blogged about the girl next door or not. A couple of weeks ago he was next door getting loved up for about 45 minutes by some chick named Christina who was in Linda's backyard for some reason. I finally had to walk over there and let her know his name so that she would know he was owned because I could see in her eyes that she was thinking about taking him too! Everyone wants that cat! I feel like telling them all that I got him at the city pound. Maybe it will encourage more people to head down there and rescue cats.
I got my eyebrows waxed on Thursday. Figured I should start trying to look as human as possible for the cruise. I then buzzed over to Walmart to pick up some more Tupperware. At one point I parked my cart and jogged over to the food half of the store to grab some milk. On my way there I passed a rack of beach coverups so of course I had to stop. I ended up picking up both a coverup and a one piece swimsuit. This got me thinking. I have no idea what size I was wearing last summer. Was I all the way down to a size 2 yet or did that happen after the surgery in August/September?? I decided to start packing for the cruise yesterday. I figured I would need time to hit the thrift store if I had nothing to wear. I found some stuff. It's a little big. It looks like there is mostly size 4-6 in my summer closet. I had started getting back up to a 4 but since the surgery on my neck, I seem to have lost the 8 pounds I had managed to gain. Major bummer. But I don't think I need to go purchase anything. Except maybe a comfy pair of shoes. I might order some skechers from Zappos. We'll see. It got me all sorts of wound up to be packing for the cruise already. Baby doll said it's kind of neat. Usually cruises are booked months in advance and feel like they're years away but we just booked ours and it's right around the corner already!! Fun!!
Okay, I'm off to find a movie to watch. The guys from work were going on and on about how much they liked Frozen. Really?? Neither of them have young kids either. Their kids are in college, or at least late high school! So, it must be good if they were raving. I'm going to go see if it's streamable on Amazon. Later!
So, I discovered a new lump on my neck. The same type of lump that started growing after surgery but before radiation last fall. The type of lump that Dr. Singh said was the cancer returning. I'm going to have to ask Dr. Kim if chemo will do anything about this lump or not. I don't want it to balloon up and become an eyesore.
I saw Dr. Kim last Monday. Actually, I saw his resident first. Normally that kind of gets on my nerves, that you have to spend 30-40 minutes with the resident before you can even see the doctor. But it actually worked in my favor this week. Dr. Kim and I seem slightly uncomfortable with each other. Convos are always a little stilted, and communication isn't easy. But his resident is a chipper little bird, always tweeting along. So, I bombarded her with questions. She deferred a lot of them to the doctor but I did get some stuff out of her. She pulled up my PET scan on the computer screen and showed me the spot on my lungs and the spot in the chest cavity on the other side. She then pointed out all of the recurrent cancer in my neck, jaw, and throat. I was like "What do you mean recurrent??". She said meaning my cancer had come back in all the areas they had operated on. Say what!? Dr. Miller hadn't mentioned that. At least I don't think he did. He said that if you take pictures too soon after a surgery, when things are still healing, then the PET scan tends to light up all over the place. So now I'm torn. Did he not mention it because he thinks it's just surgical feedback or did he not mention it because worrying about my lungs is quite enough...........
Anyway, I finally got to see Dr. Kim. He said we have three options. 1) Do another run of chemo. And he said it wasn't so much to extend my life any, he said it was to make my quality of life better. Keeping the tumors in my lungs shrunken will allow me to breath better, etc. 2) He started talking about some clinical trial that was going on. I immediately waved him off, I'm not interested in anything that sounds like work. or 3. Do nothing.
So, I went with option 1. He then gave me some paperwork to take home and examine. They are currently doing a study of cancer patient's genomes. They are then able to dictate what chemo drugs are likely to be most effective in helping to shrink the tumors. Unfortunately the study takes 30 days which means it's HUGELY expensive. Sometimes insurance covers it, sometimes it doesn't. So I sat on it for a day or two and then sent an email to his head nurse letting her know I'm going to skip it. I have no idea if my insurance would cover it or not and I don't think there's a way to find that out ahead of time. Getting surprised with an invoice for $20,000 3-4 months down the road is NOT something I want to invite into my life. Dr. Kim was really pressing me to do it. He hates being forced to use the same exact medications on every cancer patient that comes to him because he knows we're all different. Alas, I'm okay with taking a drug that was intended for the masses if it means more money to have some fun in the short term.
So I go in on Monday to have blood work done and to meet with Mary so she can brief me on what's going to go on again. Tuesday I start chemo, bright and early, at 8:00 AM. Supposedly there's two different drugs involved, one after another and the entire treatment will go for 5-6 hours. I then need to go back every 3 weeks to get a treatment. Although the first round is going to be pushed out to a 4 week cycle to accommodate the cruise I will be going on.
Yes, you heard that right, in just a few short weeks I will be laying on a sandy beach, someplace hot, with an incredible gorgeous man by my side. AHHHHHHHHHHH.
And before I even get that far, we'll be hopping in the car and heading to Atlantic City for a long weekend. How cool is that? I made an abbreviated bucket list and we've already pinged two things off my list! Woo hoo!
And as an added bonus for the Atlantic City trip, I'm going to be there the same weekend as a girlfriend of mine so we're going to hook up and do dinner one of the nights we're there. Other than that there's an aquarium, a Ripley's Believe It or Not Museum, we got tickets to see Wayne Brady, I read that the boardwalk is 4 miles long and a lot of people like to walk it and casino hop, there's a place called Steelpier that is a big amusement park. I can whip baby doll's butt at ski ball while we're there. It's going to be fun!
Today we hopped online and booked the excursions for our cruise. We're doing a walking tour in one of the ports, a beach/stingray experience in another port, and then a skyway tram at the last port. The tram thing is only an hour and then we're going to go it on our own with shopping and finding a beach. Get a little adventurous without having our hand held by the cruise line. I'll have to let you know how that goes.
So, I ran out of anti-depressants last weekend. I told Dr. Rob that now that I'm on Medicaid, scripts need to be pre-authorized. I have no idea what happened but I didn't end up getting more pills until Thursday. Not good. Sunday night I had night terrors. Yeah, not night mares mind you, but actual night terrors. It sucked!! Then I was so scared to go to sleep on Monday night that I ended up staying up the entire night. I spent the whole night researching cruises and making up a comparison spreadsheet for baby doll showing him what cruises I thought would be best for us. I finally fell asleep about 8:30 Tuesday morning until 3:00 in the afternoon. Messed up my schedule for a few days.
Wednesday night I was having baby doll's sister and BIL over for dinner along with his daughter, Jessica. Jess had just gone on a class trip to Baltimore and didn't have a chance to try crab cake's while she was there. That's just downright sacrilegious! So, baby doll was telling her how yummy MY crab cakes were and voila, a dinner was in the works. Then I started panicking. I've only made crab cakes once and it was like a year ago and honestly I don't remember them coming out all that good. Anywho, some of my guys from work were nice enough to come over Wednesday at lunch and do a taste test on the meal I was prepping to serve Wednesday night. I got some great feedback from them, made some tweaks to what I was doing, and dinner was a success. Woo hoo!
Last night we had tickets to Phantom of the Opera. First of all, I picked some really crappy seats. I couldn't see a damned thing. And every time I found a little line of sight to the stage, the lady in front of me moved her head and blocked my view. Was driving me nuts! Unfortunately, Friday was a bad day for me. I'm thinking it's because I started on the anti-depressants again on Thursday afternoon. The last time I started them I was nauseous and exhausted the entire next day which is pretty much how I felt yesterday. After trying to see something for the first 15 minutes of the show I finally gave up and fell asleep. I slept through the whole damn thing. That had to be one of the most expensive naps ever! On the bright side, baby doll said it was an excellent production. He said it's the one and only Broadway show that he's seen before and this production was better than the one he originally saw. He said the set decorations were incredible! So at least one of us got some enjoyment out of it. I have tickets to see The Odd Couple in a couple of weeks. Hopefully that one goes better for me.
I think that's been all the excitement this week. Baby doll started digging up the spot where my elevated garden is going to go. And my seedlings are looking strong and healthy. We were going to go buy the lumber today and finish digging up the sod but my honey bunny had to work all morning. It didn't seem fair to then make him run around shopping for MY project. Plus I'm still not feeling well. I'm not nauseous or feverish anymore though. Now I have a really bad sore throat and my jaw keeps having sharp pains shooting through it. If it's not one thing, it's another!
The doorbell rang a couple of hours ago. It was the neighbor from across the street. She was carrying Ethan. She wanted to know if he was ours because if not, she was going to adopt him. She said he's so sweet and friendly. <sigh> That cat is going to be the death of me. I don't remember if I blogged about the girl next door or not. A couple of weeks ago he was next door getting loved up for about 45 minutes by some chick named Christina who was in Linda's backyard for some reason. I finally had to walk over there and let her know his name so that she would know he was owned because I could see in her eyes that she was thinking about taking him too! Everyone wants that cat! I feel like telling them all that I got him at the city pound. Maybe it will encourage more people to head down there and rescue cats.
I got my eyebrows waxed on Thursday. Figured I should start trying to look as human as possible for the cruise. I then buzzed over to Walmart to pick up some more Tupperware. At one point I parked my cart and jogged over to the food half of the store to grab some milk. On my way there I passed a rack of beach coverups so of course I had to stop. I ended up picking up both a coverup and a one piece swimsuit. This got me thinking. I have no idea what size I was wearing last summer. Was I all the way down to a size 2 yet or did that happen after the surgery in August/September?? I decided to start packing for the cruise yesterday. I figured I would need time to hit the thrift store if I had nothing to wear. I found some stuff. It's a little big. It looks like there is mostly size 4-6 in my summer closet. I had started getting back up to a 4 but since the surgery on my neck, I seem to have lost the 8 pounds I had managed to gain. Major bummer. But I don't think I need to go purchase anything. Except maybe a comfy pair of shoes. I might order some skechers from Zappos. We'll see. It got me all sorts of wound up to be packing for the cruise already. Baby doll said it's kind of neat. Usually cruises are booked months in advance and feel like they're years away but we just booked ours and it's right around the corner already!! Fun!!
Okay, I'm off to find a movie to watch. The guys from work were going on and on about how much they liked Frozen. Really?? Neither of them have young kids either. Their kids are in college, or at least late high school! So, it must be good if they were raving. I'm going to go see if it's streamable on Amazon. Later!
Friday, April 11, 2014
April 11
Well, I lost my own bet. The cancer has not spread to my lower, right arm. It has actually spread to my chest and lungs. So, boys and girls, stick a fork in me, I'm done. Dr. Miller is going to talk to Dr. Kim about chemo. I might go through another run of that just to keep the cancer shrunk down for a while to give me some time. One of the ladies that I was doing yoga with went that route. She's been doing it for 5 years now. Not that I expect it to give me THAT much time but other than making me pretty tired, the chemo wasn't that bad so I'll sit through another round just to keep peeps happy if Dr. Kim even thinks it's a valid option.
I sat down and made appropriate revamps to my will. I'm going to hand that off to baby doll's brother when I see him tomorrow so he can make the changes officially and we can have it witnessed again. I'm leaving the equity I have in the house, all the furballs, a little cash, and my car to Jamie. As far as I know, he and I still have a deal that he's going to take over my mortgage payments and live in my house with my furballs so that they don't become homeless. Although baby doll might take Ethan and Sterling when he gets a house of his own. And no sweetie, you can't just take Ethan, you have to take Sterling too. They're best buds and a package deal as far as I'm concerned. The balance of my estate after bills are paid and the funeral is done will be split between baby doll and Samammy. I posted it once before but I'll say it again, if there's anything of mine that you want, to remember me by, let me know.
On the bright side, I guess, is that Dr. M said I don't have to do any more HBO treatments. Yay! And he checked my neck and he said it looks like it's actually healing on its own. Again, yay, because I sure as hell am not going in for another surgery at this point.
And before anyone asks, no, I have no idea how long it's going to take for lung cancer to kill me. I was going to ask but then said screw it because I know I would get one of those non-answers. It's going to depend on if Dr. Kim thinks chemo is a valid choice and if the cancer responds to the chemo at all.
So that's my story. I should leave you on a happier note. I actually made Dr. Rob, the shrink who's managing my anti depressants, get teary eyed this morning. I saw him before I saw Dr. Miller. He was asking how things were going with baby doll. He told me that I spoke very lovingly of Scott the last time I was in. So I told him the Clorox wipe story and told him that sums up what an absolute sweetheart that I'm dating. Dr. Rob started wiping his eyes. Said I made him cry. He couldn't believe that I would mentally note a small gesture like that and cherish and value it. He thought that was wonderful. And he said he hopes that I shared that story with baby doll. I told him that I blogged about it and baby doll reads my blog. Dr. Rob thinks I'm a poet. :-)
Have a great weekend, it's supposed to be beautiful outside!
I sat down and made appropriate revamps to my will. I'm going to hand that off to baby doll's brother when I see him tomorrow so he can make the changes officially and we can have it witnessed again. I'm leaving the equity I have in the house, all the furballs, a little cash, and my car to Jamie. As far as I know, he and I still have a deal that he's going to take over my mortgage payments and live in my house with my furballs so that they don't become homeless. Although baby doll might take Ethan and Sterling when he gets a house of his own. And no sweetie, you can't just take Ethan, you have to take Sterling too. They're best buds and a package deal as far as I'm concerned. The balance of my estate after bills are paid and the funeral is done will be split between baby doll and Samammy. I posted it once before but I'll say it again, if there's anything of mine that you want, to remember me by, let me know.
On the bright side, I guess, is that Dr. M said I don't have to do any more HBO treatments. Yay! And he checked my neck and he said it looks like it's actually healing on its own. Again, yay, because I sure as hell am not going in for another surgery at this point.
And before anyone asks, no, I have no idea how long it's going to take for lung cancer to kill me. I was going to ask but then said screw it because I know I would get one of those non-answers. It's going to depend on if Dr. Kim thinks chemo is a valid choice and if the cancer responds to the chemo at all.
So that's my story. I should leave you on a happier note. I actually made Dr. Rob, the shrink who's managing my anti depressants, get teary eyed this morning. I saw him before I saw Dr. Miller. He was asking how things were going with baby doll. He told me that I spoke very lovingly of Scott the last time I was in. So I told him the Clorox wipe story and told him that sums up what an absolute sweetheart that I'm dating. Dr. Rob started wiping his eyes. Said I made him cry. He couldn't believe that I would mentally note a small gesture like that and cherish and value it. He thought that was wonderful. And he said he hopes that I shared that story with baby doll. I told him that I blogged about it and baby doll reads my blog. Dr. Rob thinks I'm a poet. :-)
Have a great weekend, it's supposed to be beautiful outside!
Thursday, April 10, 2014
April 10
Things
are moving along over here. I'm trying to heal from my surgery last
Wednesday. My neck actually hurts a lot though. I'm not sure if that's a
good sign, meaning it really is healing, or a bad sign, that we have
now made things worse by cutting the hole to be bigger. I go in on
Friday to find out.
I have over $600 of hospital bills sitting here. When I went to see that Lizzett character at the hospital she told me not to pay them because she thought she could get me some funding to help pay them. I've been sitting on them ever since. I sent her two different e-mails, ten days apart, asking her for an update on what's going on with them. I received no response. I finally e-mailed the social worker to find out if Lizzett had died or something. Lizzett finally contacted me. She then acted like she didn't know what I was talking about and as far as she was concerned I was all set and she felt I was trying to put more work on her plate than she had time for. Are you kidding me with this? I sent a note back last night that was definitely not in the 'honey' vein. I told her that she was the one that had assigned herself this action item, not me, and that I was simply following up on it. I told her that it was MY credit rating being affected by not paying these bills and that since I'm a responsible adult, it was weighing heavily on me. I told her that if she could not secure me funding, then she should put her big girl panties on and just say so, so that I could pay these bills and move on. UGH! People irritate me to no end! Don't play God with my life and then act like you don't know what's going on! If you can't stay organized and remember what promises you've made to people, find a different line of work for crying out loud! You shouldn't be allowed to fuck with people like that! Okay, rant over. Now I got myself all wound up about it for the second day in a row. I need to move on.
As mentioned in my last blog, I also now have income. I was approved for social security disability and get a "paycheck" once a month. Baby doll spoke to the insurance company from work yesterday. I guess they will be sending me some long term disability to supplement the SSD as well. They were approving me for LTD as of yesterday and will backpay me from March 8th when my STD ended. So, I'm definitely feeling secure about staying in my house for a while longer. That's a huge source of stress that's been lifted from my shoulders.
I think that sums up the big, general stuff. Moving on to the nitty gritty.....
I woke up in the wee hours of Thursday morning with another attack of lymphodema. I was SO not happy. But there was pretty much no way that I was going to miss out on the trip to Toronto so I simply sucked it up. I spent Thursday running around, prepping for the trip. Baked some cookies for Jamie and did some last minute spot cleaning. Got myself packed. And then relaxed as much as I could. For some reason the inside of my mouth had been bleeding since I woke up from the surgery on Wednesday. They told me to give it a day and if it didn't stop, to call them. As usual, these instructions were given to me going into a weekend. That's always a PITA and I'm never sure what to do. I did my usual thing and simply ignored it. The bleeding magically stopped Friday night and hasn't been back since.
Going across the border was a joy on Friday. My face was all puffy from the lymphodema, I had a bloody washcloth hanging out of my mouth. The security guy detained us for quite a while, asking a billion questions about my health. He said he was worried that I was going to get worse and then be stuck in a foreign country needing medical aid. I was a little worried about that too but hey, I was going. Period.
Toronto was fun! Friday evening baby doll took me to Eaton Center. I had never been there before. That place is HUGE! Although I did not realize that Toronto is VERY expensive. You'd think I would have had some inkling because I've seen a number of House Hunter shows on HGTV where people are looking to buy in Toronto and the house prices are kind of crazy. Anyway, right at the beginning of our shopping expedition I found a goofy prezzie for my pet sitter. I always feel the need to bring Jamie something to make him laugh. I miss the easy going joie de vie he used to have, I'm always trying to bring it back. Then I didn't find anything else in my price range until the very end of our shopping trip. There was a store that had a big rack of cheap shoes out front that said 2 for $20. Now that's more my speed! Bought myself a couple of pairs of cheap shoes. They're definitely not something I will be wearing if I'm going to spend the day walking around but they're super cute for simply scuffing around the house or running to the store this summer. I was very excited.
Saturday we stayed in bed forever. I can't believe how comfy the pillows and mattress were in this place! I wanted to take them home with me! We finally got our butts up and according to my surgery release notes, I was allowed to finally shower on this day. So I did. I was a little worried about showering someplace other than home but it went fine. Then we walked over to the stadium to watch the Yankees play. Man, what a sucky game. The score was zip to zip for more than half the game which was really boring if you ask me and then suddenly the Blue Jays started hitting home runs like there was no tomorrow! So yeah, we lost.
Baby doll and I went back and took a very long nap. We then decided we were hungry and wanted to go out to eat. We did some research to find a place that served milkshakes so that I could order something too and not just sit there. You would think a milkshake would be easily had at most restaurants but surprisingly, it's not. Anyway, we decided it was a nice night so we walked to a place called The Pickle Barrel. It was located on Yonge Street. Turns out, it was past the Eaton Center. Here we thought the Eaton Center was too far to walk to so we drove over there and paid $20 for parking when we went shopping and now on a Saturday night at 9:00 PM we decided to walk even further than that for a bite to eat! Sometimes we just don't think things through. It ended up being okay. Baby doll said we could take a cab back home if needed but I held up surprisingly well so we did a midnight stroll down Yonge St. Good stuff! I feel like that's something you SHOULD do if you're in Toronto. :-)
Sunday we went to the zoo. That was a mistake. First of all, it was $56 for the two of us. Doesn't that seem kind of steep for a zoo? Granted, they tout themselves to be one of the largest zoos in the world at 710 acres so I sucked it up. But then it just ended up being lame. The enclosures for the animals were so big that if an animal was out, it was pretty much just a speck, and they were all just dozing in the sun so they looked kind of dead just laying around. The whole place had an air of being a little downtrodden. The icing on the cake was when we stopped at the restaurant on the way out. Baby doll wanted a quick snack before hitting the road for home. He ordered a panini. They were out of panini's. So he ordered a hot dog with chili. They were out of chili. At that point I grabbed his arm and shook my head. I really didn't want to give this place any more of our money than they had already gotten. So, we left. Kind of sad that the zoo in Cleveland, Ohio totally kicks ass over the zoo in Toronto, Canada.
I said the walk up Yonge St was no biggie but halfway through the zoo I asked baby doll if we could sit on a bench in the sun for a bit. I ended up falling asleep on his shoulder and took myself a little power nap in the middle of the zoo. Think I got more exercise than I realized!
So Sunday we were back home again around 7:00 PM. Back to the grind on Monday.
By the time I left my HBO on Monday, I was running a fever. I felt like crap the rest of the day. When I woke up Tuesday I felt like I had been run over by a truck. I called in to my HBO and went back to bed. I didn't wake up until 1:15. Felt pretty crappy all that day too. Then I couldn't sleep that night. Baby doll and I went to bed at 11:30 and at 12:30 I was still lying there wide awake. So, I got up and puttered until 3:30 when I finally started feeling tired and went back to bed. You'd think I would be dead when my alarm went off at 8:00 but I pretty much bounced out of bed and had all sorts of energy yesterday. I ended up raking ~11 bags of leaves from my big flower bed. I also did a ton of research and marked off exactly where I'm going to build my raised garden bed. I wrote down what wood I need and how much of each piece I need. All I have to do is go shopping for it and start building! I was so excited that I had baby doll take me to Lowe's last night to start looking around. I bought a bag of weed and feed which I'm going to apply to my yard this weekend. The dandelions were awful last year. I want to stay on top of them this year. And I bought a roll of landscape fabric that I'm going to need when I start building my beds. Spring might actually be here! My yard needs a ton of work though. The plows were especially brutal to the front yard this year. My topsoil is rucked up all over the place. I need to take a stiff rake and go smooth things back out and plant some grass seed in all the bald spots. Let's just hope I continue having some high energy days to get this stuff done!
Today, unfortunately, is not feeling like a high energy day. I'm up, but I'm kind of dragging. It might be a curl up and watch movies type of day after my HBO. I'll have to see.
And on that note, I'm out of here. I have half an hour before my alarm goes off so I'm going to crawl back into bed an snooze a bit. Then it's off to my stupid HBO. I told Janice that I love her but I can't wait to be done with these things. It's two and a half hours out of every day where I'm locked in a damn glass capsule. I'm so done with it at this point. I only have 8 sessions to go. I'm marking my calendar. And if Dr. M tells me on Friday that he thinks we should extend the sessions, the answer is no, no, and more no. I'm really done with these things. :-)
Meanwhile,
I had a PET scan done like two weeks ago to see if I'm still cancer
free after all this surgery/radiation/chemo mess. I thought my doc would
let me know the results when I saw him before surgery last Wednesday
but he said he hadn't had time to review them yet. Say what? So he
damned well better have something to tell me this Friday. I told baby
doll that I get the feeling it's going to be bad news and he's putting
it off as long as he can. I had told the doc quite bluntly in an e-mail
that if the cancer is still there after all the shit I just went through
then I'm throwing in the towel. I don't want to cut my body up into any
more pieces or fry the shit out of it with the radiation and chemo. And
hell, if radiation failed to work twice in a row, you know the third time
really isn't going to be the charm. Anyway, that's where things stand
with that.
I
also get to see the palliative doctor tomorrow to report in to him on
how things are going with my anti depressants and to evaluate my pain
meds. As far as I'm concerned, we've hit a nice balance. I haven't
wanted to throw myself off of a bridge since that one horrible weekend
and the morphine mixed with Excedrin does a decent job at keeping the
pain away.
Big day tomorrow! I'm hoping to get lots of good info to blog about!
Meanwhile,
I was approved for Medicaid so I have insurance. Although I sent an
e-mail to the medical supply place that delivers my feeding supplies and
they said when they called, Medicaid still has Aetna listed as my
primary insurance and Medicaid is the backup. So I've still been unable
to get more 'food'. I'm in the process of trying to get that sorted out. It takes ten times longer to get knots like this untangled because I can't make any phone calls myself. The bright side to that is baby doll is much more the 'honey' guy on the phone and gets better results. I would be 'crabby' girl and probably alienate everybody. I just get so irritated about people not doing their jobs! My most recent gripe:I have over $600 of hospital bills sitting here. When I went to see that Lizzett character at the hospital she told me not to pay them because she thought she could get me some funding to help pay them. I've been sitting on them ever since. I sent her two different e-mails, ten days apart, asking her for an update on what's going on with them. I received no response. I finally e-mailed the social worker to find out if Lizzett had died or something. Lizzett finally contacted me. She then acted like she didn't know what I was talking about and as far as she was concerned I was all set and she felt I was trying to put more work on her plate than she had time for. Are you kidding me with this? I sent a note back last night that was definitely not in the 'honey' vein. I told her that she was the one that had assigned herself this action item, not me, and that I was simply following up on it. I told her that it was MY credit rating being affected by not paying these bills and that since I'm a responsible adult, it was weighing heavily on me. I told her that if she could not secure me funding, then she should put her big girl panties on and just say so, so that I could pay these bills and move on. UGH! People irritate me to no end! Don't play God with my life and then act like you don't know what's going on! If you can't stay organized and remember what promises you've made to people, find a different line of work for crying out loud! You shouldn't be allowed to fuck with people like that! Okay, rant over. Now I got myself all wound up about it for the second day in a row. I need to move on.
As mentioned in my last blog, I also now have income. I was approved for social security disability and get a "paycheck" once a month. Baby doll spoke to the insurance company from work yesterday. I guess they will be sending me some long term disability to supplement the SSD as well. They were approving me for LTD as of yesterday and will backpay me from March 8th when my STD ended. So, I'm definitely feeling secure about staying in my house for a while longer. That's a huge source of stress that's been lifted from my shoulders.
I think that sums up the big, general stuff. Moving on to the nitty gritty.....
I woke up in the wee hours of Thursday morning with another attack of lymphodema. I was SO not happy. But there was pretty much no way that I was going to miss out on the trip to Toronto so I simply sucked it up. I spent Thursday running around, prepping for the trip. Baked some cookies for Jamie and did some last minute spot cleaning. Got myself packed. And then relaxed as much as I could. For some reason the inside of my mouth had been bleeding since I woke up from the surgery on Wednesday. They told me to give it a day and if it didn't stop, to call them. As usual, these instructions were given to me going into a weekend. That's always a PITA and I'm never sure what to do. I did my usual thing and simply ignored it. The bleeding magically stopped Friday night and hasn't been back since.
Going across the border was a joy on Friday. My face was all puffy from the lymphodema, I had a bloody washcloth hanging out of my mouth. The security guy detained us for quite a while, asking a billion questions about my health. He said he was worried that I was going to get worse and then be stuck in a foreign country needing medical aid. I was a little worried about that too but hey, I was going. Period.
Toronto was fun! Friday evening baby doll took me to Eaton Center. I had never been there before. That place is HUGE! Although I did not realize that Toronto is VERY expensive. You'd think I would have had some inkling because I've seen a number of House Hunter shows on HGTV where people are looking to buy in Toronto and the house prices are kind of crazy. Anyway, right at the beginning of our shopping expedition I found a goofy prezzie for my pet sitter. I always feel the need to bring Jamie something to make him laugh. I miss the easy going joie de vie he used to have, I'm always trying to bring it back. Then I didn't find anything else in my price range until the very end of our shopping trip. There was a store that had a big rack of cheap shoes out front that said 2 for $20. Now that's more my speed! Bought myself a couple of pairs of cheap shoes. They're definitely not something I will be wearing if I'm going to spend the day walking around but they're super cute for simply scuffing around the house or running to the store this summer. I was very excited.
Saturday we stayed in bed forever. I can't believe how comfy the pillows and mattress were in this place! I wanted to take them home with me! We finally got our butts up and according to my surgery release notes, I was allowed to finally shower on this day. So I did. I was a little worried about showering someplace other than home but it went fine. Then we walked over to the stadium to watch the Yankees play. Man, what a sucky game. The score was zip to zip for more than half the game which was really boring if you ask me and then suddenly the Blue Jays started hitting home runs like there was no tomorrow! So yeah, we lost.
Baby doll and I went back and took a very long nap. We then decided we were hungry and wanted to go out to eat. We did some research to find a place that served milkshakes so that I could order something too and not just sit there. You would think a milkshake would be easily had at most restaurants but surprisingly, it's not. Anyway, we decided it was a nice night so we walked to a place called The Pickle Barrel. It was located on Yonge Street. Turns out, it was past the Eaton Center. Here we thought the Eaton Center was too far to walk to so we drove over there and paid $20 for parking when we went shopping and now on a Saturday night at 9:00 PM we decided to walk even further than that for a bite to eat! Sometimes we just don't think things through. It ended up being okay. Baby doll said we could take a cab back home if needed but I held up surprisingly well so we did a midnight stroll down Yonge St. Good stuff! I feel like that's something you SHOULD do if you're in Toronto. :-)
Sunday we went to the zoo. That was a mistake. First of all, it was $56 for the two of us. Doesn't that seem kind of steep for a zoo? Granted, they tout themselves to be one of the largest zoos in the world at 710 acres so I sucked it up. But then it just ended up being lame. The enclosures for the animals were so big that if an animal was out, it was pretty much just a speck, and they were all just dozing in the sun so they looked kind of dead just laying around. The whole place had an air of being a little downtrodden. The icing on the cake was when we stopped at the restaurant on the way out. Baby doll wanted a quick snack before hitting the road for home. He ordered a panini. They were out of panini's. So he ordered a hot dog with chili. They were out of chili. At that point I grabbed his arm and shook my head. I really didn't want to give this place any more of our money than they had already gotten. So, we left. Kind of sad that the zoo in Cleveland, Ohio totally kicks ass over the zoo in Toronto, Canada.
I said the walk up Yonge St was no biggie but halfway through the zoo I asked baby doll if we could sit on a bench in the sun for a bit. I ended up falling asleep on his shoulder and took myself a little power nap in the middle of the zoo. Think I got more exercise than I realized!
So Sunday we were back home again around 7:00 PM. Back to the grind on Monday.
By the time I left my HBO on Monday, I was running a fever. I felt like crap the rest of the day. When I woke up Tuesday I felt like I had been run over by a truck. I called in to my HBO and went back to bed. I didn't wake up until 1:15. Felt pretty crappy all that day too. Then I couldn't sleep that night. Baby doll and I went to bed at 11:30 and at 12:30 I was still lying there wide awake. So, I got up and puttered until 3:30 when I finally started feeling tired and went back to bed. You'd think I would be dead when my alarm went off at 8:00 but I pretty much bounced out of bed and had all sorts of energy yesterday. I ended up raking ~11 bags of leaves from my big flower bed. I also did a ton of research and marked off exactly where I'm going to build my raised garden bed. I wrote down what wood I need and how much of each piece I need. All I have to do is go shopping for it and start building! I was so excited that I had baby doll take me to Lowe's last night to start looking around. I bought a bag of weed and feed which I'm going to apply to my yard this weekend. The dandelions were awful last year. I want to stay on top of them this year. And I bought a roll of landscape fabric that I'm going to need when I start building my beds. Spring might actually be here! My yard needs a ton of work though. The plows were especially brutal to the front yard this year. My topsoil is rucked up all over the place. I need to take a stiff rake and go smooth things back out and plant some grass seed in all the bald spots. Let's just hope I continue having some high energy days to get this stuff done!
Today, unfortunately, is not feeling like a high energy day. I'm up, but I'm kind of dragging. It might be a curl up and watch movies type of day after my HBO. I'll have to see.
And on that note, I'm out of here. I have half an hour before my alarm goes off so I'm going to crawl back into bed an snooze a bit. Then it's off to my stupid HBO. I told Janice that I love her but I can't wait to be done with these things. It's two and a half hours out of every day where I'm locked in a damn glass capsule. I'm so done with it at this point. I only have 8 sessions to go. I'm marking my calendar. And if Dr. M tells me on Friday that he thinks we should extend the sessions, the answer is no, no, and more no. I'm really done with these things. :-)
Thursday, April 3, 2014
April 3
Okay, just a quickie. I just collected my mail.
BTW:
- ElRay, that card made me huff like crazy! Huff = my version of LMAO.
- JBB, Bat Pig wouldn't let Lulubell eat Thai. He felt it was unsafe so he consumed it himself. He said it was actually delicious and he feels a little guilty about depriving Lulubell but hey, he's a pig, it's in his nature, what's he gonna do, right?
And as great as those two little treasures were in my mailbox, they got trumped by the government. I received notice that I have been approved to get SS Disability. Seems like that was a lot faster than 3-5 months! I hopped online and checked my bank account. Sure enough, they direct deposited back payments from February and March. So I'll be getting a deposit the second Wednesday of each month from now until I'm able to go back to work. According to the booklet I received, they can stop over to review your case any time they want. The more likely a rehabilatation, the sooner the review. ie: it could happen in 3 months. But they said your acceptance letter should state when they plan to review you. So I read the acceptance letter from top to bottom, all four pages, and it turns out they have no plan to review me for 3 years. Not sure how I feel about that. Relieved that I don't have to jump through hoops for anyone any time soon because I'm really hoping to be back to work within the year, but kind of depressed that my paperwork makes me look dire enough that they'll put off my review for the max allowable time. Sheesh.
Meanwhile, I punched the numbers into my budget and so long as I stick to my budget, not only will I be able to keep my cute little house and all my fur balls, but I'll even have an extra $148 at the end of each month that isn't earmarked for anything in particular. Now let's just hope that the budget I came up with is reasonable. The fixed costs are easy to list, it's the variable costs that throw me for a loop. Guess I'll just have to see how I do. I've been trying not to spend any money but I haven't really been tracking anything because I didn't have a budget to work to yet. Now that I have one, I need to get down to business. So far this month I spent $8 at Home Depot and $80 at Wegman's. Game on.
BTW:
- ElRay, that card made me huff like crazy! Huff = my version of LMAO.
- JBB, Bat Pig wouldn't let Lulubell eat Thai. He felt it was unsafe so he consumed it himself. He said it was actually delicious and he feels a little guilty about depriving Lulubell but hey, he's a pig, it's in his nature, what's he gonna do, right?
And as great as those two little treasures were in my mailbox, they got trumped by the government. I received notice that I have been approved to get SS Disability. Seems like that was a lot faster than 3-5 months! I hopped online and checked my bank account. Sure enough, they direct deposited back payments from February and March. So I'll be getting a deposit the second Wednesday of each month from now until I'm able to go back to work. According to the booklet I received, they can stop over to review your case any time they want. The more likely a rehabilatation, the sooner the review. ie: it could happen in 3 months. But they said your acceptance letter should state when they plan to review you. So I read the acceptance letter from top to bottom, all four pages, and it turns out they have no plan to review me for 3 years. Not sure how I feel about that. Relieved that I don't have to jump through hoops for anyone any time soon because I'm really hoping to be back to work within the year, but kind of depressed that my paperwork makes me look dire enough that they'll put off my review for the max allowable time. Sheesh.
Meanwhile, I punched the numbers into my budget and so long as I stick to my budget, not only will I be able to keep my cute little house and all my fur balls, but I'll even have an extra $148 at the end of each month that isn't earmarked for anything in particular. Now let's just hope that the budget I came up with is reasonable. The fixed costs are easy to list, it's the variable costs that throw me for a loop. Guess I'll just have to see how I do. I've been trying not to spend any money but I haven't really been tracking anything because I didn't have a budget to work to yet. Now that I have one, I need to get down to business. So far this month I spent $8 at Home Depot and $80 at Wegman's. Game on.
Wednesday, April 2, 2014
April 2
Today was surgery day. As mentioned previously, there were four items to be taken care of today. Only two of them were achievable. First, the most important one, getting that damn hardware out. Done. He had to make a half inch incision on either side of the hole so that he could get to the edge of the plate. He then used a suture to close up each of those incisions and he also used the sutures to hold a piece of alloderm in place over the hole. His hope is that the alloderm will act as a bridge for my skin to grow over and seal up the hole. On top of that he put a piece of xeroform (which I have a ready supply of from a previous surgery) and some gauze (which I also have a ready supply of). He then wrapped the whole thing in a flexible, slightly sticky brown bandage all around my neck. My discharge paperwork was great at telling me what was done to me but not how to take care of it. I had to call Priya back down when I was in recovery to find out more. I'm allowed to remove the bandage when it starts to soak through. I should then replace the xeroform and the gauze and rewrap it. She said I'll probably need to do this once a day. I was happy to hear that. I've been changing my bandage 3-4 times a day up until now and it's been quite a PITA. It will be nice to scale back to once a day.
Dr. M was also able to replace the tube in my left ear that was falling out. He talked to Scott about that and according to Scott, Dr. M said there was some granulation going on that he felt was normal but given my history, he sent it out to be biopsied. WTF?? I might have cancer in my ear? That was a bit unexpected and a little unsettling.
Speaking of cancer, Dr. M hasn't had a chance to look at my PET scan results yet so there was no news on that front. I told Scott that I think I have cancer in my right, lower arm. That's my prediction. Anyone want to put $5 on other parts of my body? ;-P
Dr. M wasn't able to stretch my esophagus or see why my TEP isn't working because currently, my mouth is not opening far enough for him to get a scope in there. He even tried using a pediatric scope and it was a no-go. Guess I'll be working on mouth stretching exercises as soon as some neck healing goes on. IF some neck healing goes on.
I guess my neck healing on its own is still a long shot. We're going to give it a few weeks and then if there's no progress, we move on to the two part surgery to get the shoulder flap put in place to close this hole. On the bright side, Dr. M told Scott that the HBO treatments seems to be working. He can see that there's been some healing going on. I was relieved to hear that since it seems like things have been getting slowly worse since those treatments started.
I had to head down to the pharmacy when they finally released me so that I could pick up some pain meds and some antibiotics. Please note, if you're ever in a position where you need someone to drive you around in a wheel chair, do NOT pick the man who drives a Corvette. Very bad idea. Anyway, my drugs had to be pre-authorized which was something new and caused a bit of waiting around but once they were approved, they were totally free. I had my wallet out, ready to pay my $20 co-pay. Turns out Medicaid pays for the whole thing. Baby doll said I should have gotten fired long ago. He said everything's been better since I got fired. I was like "how do you figure?". And he said well first, no more copays, and second, as soon as I couldn't get my next batch of Jevity delivered, I started playing with making smoothies instead. He said since I've been drinking the smoothies I've seemed happier and more energetic AND I've gained 8 pounds! Yep. Count 'em. 8 pounds.
Toby came over to play cards with me at lunch yesterday. He said that he can tell that I've gained weight. He said I look much better than the last time he saw me. Amazing what a muffin top can do for a girl. Ha! Oh, and I need to put it in writing. I taught him how to play Gin the last time he was here and he totally screwed up the game play (obviously my instructions sucked) but even after getting back on the right track he kicked my ass! I was NOT happy! So allow me to gleefully announce that not only did I spank him yesterday, it was a complete shut out. Yep. I rock. He said he's not coming back again,, the little spoilsport. Based on the fact that he wiped his plate clean of the chicken quesadilla I made him and seemed to enjoy his cupcake for dessert..........he'll be back. ;-)
Have I mentioned how much I love my little, black kitty? He sleeps in the craziest positions that just make me laugh. And when we're curled up in bed I'll be petting him but then I'll eventually stop and he gives this sleepy, little "meep" noise, like 'hey, what'd ya stop for', so I start petting him again. And as soon as he hears baby doll's voice when he comes home from work he comes running from wherever he is in the house and starts talking to Scott and demanding to be picked up so they can have a conversation about their day (I'm a little envious of this!). And it turns out that he's a huge fan of my chocolate, banana, peanut butter smoothies and now demands that I share them when I make them. And he's so casual about jumping up into anyone's lap who visits, just such a friendly, laid back guy. And I told you about his funny sliding thing. And for some reason he walks around with the tip of his tongue protruding from his mouth. So you have all black and then this little spot of pink. Makes him look like such a dweeb. And I love that all you have to do is look at him and he starts purring and he purrs loud enough that you can hear him from one room over. He's simply the bomb. I love all my kitties. They all have special, little personalities, but I adore that stupid, little, black furball. I'm so glad I ran back to the adoption room and grabbed his ticket on a whim. I almost left without him. I would have missed out on something wonderful.
My basil is coming up! I just planted it like a week ago. That and the cilantro. No movement on the cilantro but the basil is coming up like crazy. Exciting! And last night I planted my tomatoes and green peppers so hopefully in 10 days you will see me posting pictures of those seeds sprouting. I planted (6) cherry tomato plants, (6) roma tomato plants, (12) California Wonder Peppers, and (12) carnival mix sweet peppers. I think there's 4-5 different types of peppers in there.
I turned my washing machine on the other day and water started pouring out onto the floor. Whoa! I just bought that machine in Jan 2013! How can there be something major wrong with it already?? Shouldn't it last like a decade or something? Baby doll called Home Depot and they gave him the service line for Samsung because obviously they're over a year old. Chickie on the phone said she thought there was a known problem with that particular model and put him in touch with some higher up chickie. Higher up chickie didn't know anything about an existing problem but she told him that she would give him a one time, 3 month extension on the warranty for it so that we could get it looked at for free. The guy came over yesterday. Turns out it IS a known problem. They designed it so that the pump is attached to the barrel which vibrates when the machine is in use. They had to make a special relocation kit and go out in the field and move the pump from being attached to the barrel to being attached to the sidewall that doesn't move. The guy said all parts are covered as well since it's a known problem. If I had registered the machine, I probably would have gotten a notice about the problem before it occurred. Ah well. So, now we're waiting for the relocation kit to come in. The guy is hoping it comes tomorrow so he can get us taken care of before we go away. Otherwise, it will have to be next week sometime and I'll have to schedule it around my continuing HBO appointments.
Friday morning baby doll and I are headed to Toronto. Woo hoo! We were going to do the zoo on Friday and shopping on Sunday but after looking at the weather report, we have now swapped those activities so that we can visit the zoo when it's sunny and warm rather than rainy and chilly. I think it's supposed to be crappy on Saturday too for the Yankee's game but the nice thing about Toronto is that they can put up the dome and have the game no matter what the weather. Good stuff! Especially after we got rained out in Ohio last year. That was just no fun at all.
Okay, that's about all that's been happening over here. Baby doll has become a bad influence on my smoothies. Tonight's smoothie included:
Milk
CBD
Protein powder
Two containers of chocolate pudding
Banana
Half a cup of peanut butter
A peanut butter ice cream sandwich
Four Reese's peanut butter cups
A vanilla cupcake with chocolate frosting
Give me another week and I think I'll be back to wearing my size 4 jeans instead of my size 2 jeans. :-)
Dr. M was also able to replace the tube in my left ear that was falling out. He talked to Scott about that and according to Scott, Dr. M said there was some granulation going on that he felt was normal but given my history, he sent it out to be biopsied. WTF?? I might have cancer in my ear? That was a bit unexpected and a little unsettling.
Speaking of cancer, Dr. M hasn't had a chance to look at my PET scan results yet so there was no news on that front. I told Scott that I think I have cancer in my right, lower arm. That's my prediction. Anyone want to put $5 on other parts of my body? ;-P
Dr. M wasn't able to stretch my esophagus or see why my TEP isn't working because currently, my mouth is not opening far enough for him to get a scope in there. He even tried using a pediatric scope and it was a no-go. Guess I'll be working on mouth stretching exercises as soon as some neck healing goes on. IF some neck healing goes on.
I guess my neck healing on its own is still a long shot. We're going to give it a few weeks and then if there's no progress, we move on to the two part surgery to get the shoulder flap put in place to close this hole. On the bright side, Dr. M told Scott that the HBO treatments seems to be working. He can see that there's been some healing going on. I was relieved to hear that since it seems like things have been getting slowly worse since those treatments started.
I had to head down to the pharmacy when they finally released me so that I could pick up some pain meds and some antibiotics. Please note, if you're ever in a position where you need someone to drive you around in a wheel chair, do NOT pick the man who drives a Corvette. Very bad idea. Anyway, my drugs had to be pre-authorized which was something new and caused a bit of waiting around but once they were approved, they were totally free. I had my wallet out, ready to pay my $20 co-pay. Turns out Medicaid pays for the whole thing. Baby doll said I should have gotten fired long ago. He said everything's been better since I got fired. I was like "how do you figure?". And he said well first, no more copays, and second, as soon as I couldn't get my next batch of Jevity delivered, I started playing with making smoothies instead. He said since I've been drinking the smoothies I've seemed happier and more energetic AND I've gained 8 pounds! Yep. Count 'em. 8 pounds.
Toby came over to play cards with me at lunch yesterday. He said that he can tell that I've gained weight. He said I look much better than the last time he saw me. Amazing what a muffin top can do for a girl. Ha! Oh, and I need to put it in writing. I taught him how to play Gin the last time he was here and he totally screwed up the game play (obviously my instructions sucked) but even after getting back on the right track he kicked my ass! I was NOT happy! So allow me to gleefully announce that not only did I spank him yesterday, it was a complete shut out. Yep. I rock. He said he's not coming back again,, the little spoilsport. Based on the fact that he wiped his plate clean of the chicken quesadilla I made him and seemed to enjoy his cupcake for dessert..........he'll be back. ;-)
Have I mentioned how much I love my little, black kitty? He sleeps in the craziest positions that just make me laugh. And when we're curled up in bed I'll be petting him but then I'll eventually stop and he gives this sleepy, little "meep" noise, like 'hey, what'd ya stop for', so I start petting him again. And as soon as he hears baby doll's voice when he comes home from work he comes running from wherever he is in the house and starts talking to Scott and demanding to be picked up so they can have a conversation about their day (I'm a little envious of this!). And it turns out that he's a huge fan of my chocolate, banana, peanut butter smoothies and now demands that I share them when I make them. And he's so casual about jumping up into anyone's lap who visits, just such a friendly, laid back guy. And I told you about his funny sliding thing. And for some reason he walks around with the tip of his tongue protruding from his mouth. So you have all black and then this little spot of pink. Makes him look like such a dweeb. And I love that all you have to do is look at him and he starts purring and he purrs loud enough that you can hear him from one room over. He's simply the bomb. I love all my kitties. They all have special, little personalities, but I adore that stupid, little, black furball. I'm so glad I ran back to the adoption room and grabbed his ticket on a whim. I almost left without him. I would have missed out on something wonderful.
My basil is coming up! I just planted it like a week ago. That and the cilantro. No movement on the cilantro but the basil is coming up like crazy. Exciting! And last night I planted my tomatoes and green peppers so hopefully in 10 days you will see me posting pictures of those seeds sprouting. I planted (6) cherry tomato plants, (6) roma tomato plants, (12) California Wonder Peppers, and (12) carnival mix sweet peppers. I think there's 4-5 different types of peppers in there.
I turned my washing machine on the other day and water started pouring out onto the floor. Whoa! I just bought that machine in Jan 2013! How can there be something major wrong with it already?? Shouldn't it last like a decade or something? Baby doll called Home Depot and they gave him the service line for Samsung because obviously they're over a year old. Chickie on the phone said she thought there was a known problem with that particular model and put him in touch with some higher up chickie. Higher up chickie didn't know anything about an existing problem but she told him that she would give him a one time, 3 month extension on the warranty for it so that we could get it looked at for free. The guy came over yesterday. Turns out it IS a known problem. They designed it so that the pump is attached to the barrel which vibrates when the machine is in use. They had to make a special relocation kit and go out in the field and move the pump from being attached to the barrel to being attached to the sidewall that doesn't move. The guy said all parts are covered as well since it's a known problem. If I had registered the machine, I probably would have gotten a notice about the problem before it occurred. Ah well. So, now we're waiting for the relocation kit to come in. The guy is hoping it comes tomorrow so he can get us taken care of before we go away. Otherwise, it will have to be next week sometime and I'll have to schedule it around my continuing HBO appointments.
Friday morning baby doll and I are headed to Toronto. Woo hoo! We were going to do the zoo on Friday and shopping on Sunday but after looking at the weather report, we have now swapped those activities so that we can visit the zoo when it's sunny and warm rather than rainy and chilly. I think it's supposed to be crappy on Saturday too for the Yankee's game but the nice thing about Toronto is that they can put up the dome and have the game no matter what the weather. Good stuff! Especially after we got rained out in Ohio last year. That was just no fun at all.
Okay, that's about all that's been happening over here. Baby doll has become a bad influence on my smoothies. Tonight's smoothie included:
Milk
CBD
Protein powder
Two containers of chocolate pudding
Banana
Half a cup of peanut butter
A peanut butter ice cream sandwich
Four Reese's peanut butter cups
A vanilla cupcake with chocolate frosting
Give me another week and I think I'll be back to wearing my size 4 jeans instead of my size 2 jeans. :-)
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