I have had a no good, very bad, terribly awful week. Last Sunday has been my worst day yet throughout this ordeal. I honestly don't know how I made it through that day alive. I really wanted to kill myself in the worst way. I've read the word 'despair' many times over the years but never really had a feeling to associate with it. Well, now I do. When no matter what happy thoughts you come up with have zero effect on how you're feeling about life, that's what I would call despair and that's how I was feeling last Sunday. God it sucked. I am just so tired of feeling like crap day in and day out. I keep expecting to feel better and I simply don't. I don't understand where I came up with the energy to go to work for that week and a half. I'm wondering if maybe I AM feeling worse instead of better. For a reason. Like the cancer is back again. The CT scan results came back from last week though and according to Dr. M, everything looks normal, he doesn't see any signs of cancer. Of course that was just of my head and neck, the PET scan in March will be full body and will be able to confirm Dr. M's assessment one way or another. I'm announcing right now though, if the cancer comes back for a fourth time, I'm done. No more surgeries. No more removing or moving body parts. I'm just going to let the cancer do its thing and take me away from this place. I've put up a good long fight, and I'm still fighting but I don't think anyone in their right mind would ask me to do any more than what I've already done.
So I have a follow up with Dr. S today. Just a check in to say 'hi' and see how it's going. Baby doll took the day off from work to go with me. He's going to go to my HBO appointment with me today too. I usually don't drag him along to all these boring appointments but as mentioned above, I'm having a bad week so the extra support sure could come in handy. I sent a note ahead of my appointment just now warning Dr. S's PA that I'm going to want to talk about anti-deppresants. Something needs to change about my mental state. Quickly.
I actually ran out of narcotics last weekend. I knew I was going to run out too so instead of taking them every 4 hours I was stretching them to every 12 but I still ran out at 7:00 PM on Sunday night and couldn't get any more until Tuesday morning at 8:30 AM. I'm wondering if that's where some of the despair came in. I was also running a low grade fever and throwing up. It wasn't pretty. I'm pretty sure I went into withdrawal. I've been taking those drugs pretty heavily since August, for crying out loud. Note to self. Do NOT run out again. It's my own fault. I tend to over pour and not pay close attention to my dosing. I'm now being super careful because I don't ever want to feel that bad again. Can't wait to wean off these things. That's going to be a barrel of laughs. Not.
Anyway, as mentioned above, nothing has really changed in the health department. I still have a gaping hole in my neck, most of my pain still comes from my jaw where they removed the tooth, the lymphodema seems to have calmed down for the most part, and I feel like absolute crud, day after day. I thought so long as I could cook and jump my baby doll's bones, I would be happy. Alas, those happy thoughts just aren't cutting it. The only happy thought I could muster this week was my double hammock. I really want the warm weather to come so that I can lie out on my hammock with the sun shining down, a light breeze blowing through the treetops, and baby doll gently snoring next to me. It would be nice to feel that again.
Which kind of segues me into my only fun topic this week. For Valentine's Day I made a request. I'm usually practical girl. Stove for Christmas, humidifier for my birthday. I'm not much for useless geegaws. But I requested one. I have a thing for piggy banks. Not that you would know it because I don't own any. They're fairly useless, they collect a lot of dust, and they don't go with any decor in any room whatsoever. But I really get a kick out of them. I asked baby doll to buy me piggy bank for Vday. I told him at Christmas time I was in Target and they had a cute little piggy bank wearing a little tutu and a tiara and I had been daydreaming about her ever since because she was just so effin' adorable. Don't you know, three months later, she was still there. Baby doll bought her for me for Vday. I named her Lulubell. In keeping with my nature, I decided that she needs a purpose. I decided to put $2 in her every day. $1 for me and $1 for baby doll. To save up for something special. But what? Maybe a round of golf at someplace we can't normally afford, or hang gliding lessons out in Naples, or.....I don't know, I sat on it for a couple of weeks. My thought about the double hammock led me to Lulubell's ultimate purpose. I think the weather this year has been simply too much for my darkened mindset. Next Valentine's Day we're heading to Florida for a week to lay on the beach. Period. If it's not feasible to cash in my 401k, buy a rental property, and move to the sunny state then I at the very least need to spend a week there in the middle of our crap ass winter. I'm not sure how far $700 will get us, hopefully round trip plane tickets at least. Maybe my father will let us rent out his spare bedroom for a week next February at a friends and family discount. So Lulubell has a purpose in life other than being the ultimately cute dust collecting geegaw, and I have a happy thought about someplace warm stored up for next winter. :-)
Thursday, February 27, 2014
Friday, February 21, 2014
February 21
Had my CT scan yesterday afternoon. No idea when to expect results back for that. I was originally scheduled to see Dr. M on 3/7 but was notified yesterday that that's been pushed out to 3/14. I'm a bit bummed because I really want someone to look at my fistula. I had baby doll look at it the other night and what he had to say about it didn't make me feel warm and fuzzy. He said before when he looked at it, he was looking into a hole in my neck and he could see stuff down in there. Now when he looks at it, it looks like the 'stuff' is closer to the surface and the wound is closing around it rather than over it? Or something to that effect. As much as I want this thing to heal, I don't want a screw to be sticking out of my neck when all is said and done. I feel like I should grab the edges of skin, pull them up and over the hardware that's showing, and steri strip them in place so that it heals correctly. But I don't want to do anything without a medical person okaying it. I think I need to e-mail Dr. M. I'll go ahead and do that right after this blog.
I guess the good news there is that the HBO treatments seem to be doing something. Yay! I haven't had much trouble with the swelling at all for the past week. For some reason I was running a low grade fever again yesterday morning. Janice at the HBO place told me that if it gets up to 101, she can't give me the treatment because I'm at risk for seizures. Luckily it was the usual 100.5 nonsense that seems to happen now and then and today it was gone again so I'm okay.
I usually try to e-mail Dr. Claire only once a week in regards to any prescriptions I need to have refilled. I had to e-mail her twice this week and I felt bad about it. I told her that I totally owed her a treat because she was always so patient and prompt in regards to my requests. I told her to name her treat and it was hers. She laughed. She said she's just doing her job and she's happy to help me. Then she said that if some 7 layer bars made their way over to her anyway, they wouldn't go to waste. Ha! I will deliver her treats next Tuesday.
I'm still trying to get a handle on where my health stands. I tried going back to work full time and it was an epic fail. So now I'm wondering if I could manage to go back part time. I have a query in with HR to see if my company would even want me part time. I should hear something about it next week. Meanwhile, Sammy brought up a good point. Why would I want to go back to work part time, making 50% of my pay when I could go on long term disability and make 60% of my pay? And yes, my understanding is that I should definitely qualify for long term disability. I might have to get a disability lawyer to prove it but supposedly, I'm a pretty sure thing. So, I don't know the answer to her question. I'm assuming there's an answer out there. Maybe I'll see what HR has to say when I talk to them next week about part time being a viable option or not. In the meantime, I sat down to look at my budget. I've been ignoring it for months thinking that I was going to go back to work and I could simply catch up on whatever fell behind while I was only collecting 75% of my pay. Since that doesn't seem to be an option, it was time to do a reality check. Man, talk about depressing. The estimated part time pay figure that I came up with would cover all of my fixed expenses for the month and leave me with $84 for groceries, vet bills, Christmas presents, hair cuts, gasoline, etc. Yeah, that's obviously not going to cut it. So, I started taking a serious look at the housemate option. I figure I can charge $400/month including utilities to have someone live with me. That would go a long way. I started looking at ads on Craig's List and I started composing an ad for myself. I told baby doll that I wanted him to read my ad when I was done with it and smooth out the rough edges for me. Well, he came home from dinner with his daughter last night and told me that he wants to apply for the position of being my housemate.
Yeah, not sure how I feel about that.
I told him that it didn't seem right, making him pay to live with me. He's already still paying half his mortgage on his house and he has a place at his brother's where he can stay for free. Plus, I enjoy providing for him. I love him and feel that he deserves to be treated like a king!
He argued that it's worth $100 a week to him to not have to share his bathroom at my house, and to be able to walk around naked whenever he wants to, and that he's been freeloading off of me for long enough.
The logical side of me agrees that I wouldn't be shopping at Wegman's at all if it weren't for him because I no longer eat food. And there probably are some incremental costs to me from running the dishwasher every other night, and doing his laundry, and having him shower here more often than not.....
So, I agreed to take him on as my housemate. First month's rent is due on March 1st. We'll see how it goes. :-) And yes, that's said tongue in cheek because nothing at all is changing other than him handing me a check once a month. He already has half the bedroom closet filled with his clothes and the entire TV console in the bedroom houses his stuff. He already has a drawer in the bathroom, artwork on the walls, family pictures in the living room, etc. Now he's simply paying for all the perks that I was happy to supply to the love of my life.
Okay, I think that's about it. Health is so-so. Monitoring my general health awareness hasn't been going very well. There just aren't enough days where I feel good. I'm dying for that to change. Mentally, I had a bit of a meltdown earlier this week. I wrote down all of my distress in an e-mail and sent it off to 6-7 peeps to weigh in on. I feel better now. Financially, things will hopefully work out. They're at least on the right track at this point. Have I missed anything?
I guess the good news there is that the HBO treatments seem to be doing something. Yay! I haven't had much trouble with the swelling at all for the past week. For some reason I was running a low grade fever again yesterday morning. Janice at the HBO place told me that if it gets up to 101, she can't give me the treatment because I'm at risk for seizures. Luckily it was the usual 100.5 nonsense that seems to happen now and then and today it was gone again so I'm okay.
I usually try to e-mail Dr. Claire only once a week in regards to any prescriptions I need to have refilled. I had to e-mail her twice this week and I felt bad about it. I told her that I totally owed her a treat because she was always so patient and prompt in regards to my requests. I told her to name her treat and it was hers. She laughed. She said she's just doing her job and she's happy to help me. Then she said that if some 7 layer bars made their way over to her anyway, they wouldn't go to waste. Ha! I will deliver her treats next Tuesday.
I'm still trying to get a handle on where my health stands. I tried going back to work full time and it was an epic fail. So now I'm wondering if I could manage to go back part time. I have a query in with HR to see if my company would even want me part time. I should hear something about it next week. Meanwhile, Sammy brought up a good point. Why would I want to go back to work part time, making 50% of my pay when I could go on long term disability and make 60% of my pay? And yes, my understanding is that I should definitely qualify for long term disability. I might have to get a disability lawyer to prove it but supposedly, I'm a pretty sure thing. So, I don't know the answer to her question. I'm assuming there's an answer out there. Maybe I'll see what HR has to say when I talk to them next week about part time being a viable option or not. In the meantime, I sat down to look at my budget. I've been ignoring it for months thinking that I was going to go back to work and I could simply catch up on whatever fell behind while I was only collecting 75% of my pay. Since that doesn't seem to be an option, it was time to do a reality check. Man, talk about depressing. The estimated part time pay figure that I came up with would cover all of my fixed expenses for the month and leave me with $84 for groceries, vet bills, Christmas presents, hair cuts, gasoline, etc. Yeah, that's obviously not going to cut it. So, I started taking a serious look at the housemate option. I figure I can charge $400/month including utilities to have someone live with me. That would go a long way. I started looking at ads on Craig's List and I started composing an ad for myself. I told baby doll that I wanted him to read my ad when I was done with it and smooth out the rough edges for me. Well, he came home from dinner with his daughter last night and told me that he wants to apply for the position of being my housemate.
Yeah, not sure how I feel about that.
I told him that it didn't seem right, making him pay to live with me. He's already still paying half his mortgage on his house and he has a place at his brother's where he can stay for free. Plus, I enjoy providing for him. I love him and feel that he deserves to be treated like a king!
He argued that it's worth $100 a week to him to not have to share his bathroom at my house, and to be able to walk around naked whenever he wants to, and that he's been freeloading off of me for long enough.
The logical side of me agrees that I wouldn't be shopping at Wegman's at all if it weren't for him because I no longer eat food. And there probably are some incremental costs to me from running the dishwasher every other night, and doing his laundry, and having him shower here more often than not.....
So, I agreed to take him on as my housemate. First month's rent is due on March 1st. We'll see how it goes. :-) And yes, that's said tongue in cheek because nothing at all is changing other than him handing me a check once a month. He already has half the bedroom closet filled with his clothes and the entire TV console in the bedroom houses his stuff. He already has a drawer in the bathroom, artwork on the walls, family pictures in the living room, etc. Now he's simply paying for all the perks that I was happy to supply to the love of my life.
Okay, I think that's about it. Health is so-so. Monitoring my general health awareness hasn't been going very well. There just aren't enough days where I feel good. I'm dying for that to change. Mentally, I had a bit of a meltdown earlier this week. I wrote down all of my distress in an e-mail and sent it off to 6-7 peeps to weigh in on. I feel better now. Financially, things will hopefully work out. They're at least on the right track at this point. Have I missed anything?
Sunday, February 16, 2014
February 16
The poker game was a blast and my swelling was down enough that I could see to play. Early on in the first game I had a full house and was wheedling bets out of people all around the table and getting really excited about my hand. Turns out Andy had a better full house. Bastard. Totally scooped me. Who invited him anyway?? That was the first scoop of the evening but there were more to come for and from other players as well. At one point Jer totally screwed over poor RayB. I ended up calling RayB out of the room where I locked and loaded the marshmallow rifle that I had bought for baby doll for Christmas. I handed it to RayB and told him to go blast the hell out of Jer. The marshmallow gun ended up being the highlight of the evening. It's always something with these guys. Ha!
So, the swelling. It's come back a few times but not nearly as bad as it was in the pictures I posted in my last blog. Twice it's come back bad enough where I feel my sight was too impaired to drive but otherwise, it's stayed somewhat under control. And just to be clear, Dr. M said lymphadema was his 'best guess'. And he used that exact phrase. For some reason one of my friends thought they knew exactly what was wrong with me which made me laugh. I'm not sure I ever get that definitive of an answer from anyone in the medical world,
The nose spray that Dr. M prescribed me is wonderful. I'm allowed to use it 4 times a day but I try to limit myself to once a day. a) I don't want to build up a tolerance to it (if that's even possible) and b) I'm okay with the fluids in my head finding an escape through my nose for the most part. It's just when I'm trying to sleep or don't have access to tissues that it gets annoying.
Huh, you might say. When would she not have access to tissues? Well, when I'm in the hyperbaric oxygen chamber for instance. They don't let you take ANYthing in there. I'm glad they at least let you wear a hospital gown. Two of them actually because it gets a little chilly in that tube. I had the tubes put in my ears on Monday. That was a little uncomfortable and not quite what I expected, as usual. I find that I don't ask enough questions any more. I'm so resigned to everyone and everything prodding and poking me in any manner possible that I just don't care any more. So, some totally new doc, Dr. N, numbed up my ear drums, then sliced a hole in each of them and stuck a little tube in. Supposedly they will fall out on their own ~ 6 months from now. I will likely not even notice when it happens. Meanwhile, my hearing has become kind of muffled, distancy and echoey. No idea if that's normal or not. No idea if that will go away as my ear drums heal and the tubes fall out or what. Whatever. It's a question I will eventually remember to ask of someone, somewhere along the way. HBO treatments started on Tuesday morning. The first one sucked. Janice, the nurse on duty, took away my drool washcloth and gave me one of theirs to use instead. By the time my hour and a half session was up, I was nauseous and my tongue was burning. I asked her if they use detergent and bleach on their washcloths. She said, of course. Um, okay. I told her that wasn't cool that I had it in my mouth for almost two hours and that from here on out, I'd be keeping my own washcloth, thank you very much. She winced. I think she realized the mistake we made with that and I've been allowed to keep my own washcloth ever since. The treatments themselves are okay. You know when you go to the drive-thru teller at the bank and they have those little containers that you stick your banking in that then get sucked up the tube and into the building? Imagine a life size version of the little container. I lay down on a gurney and get loaded into a glass coffin basically. They pressurize it and then I either nap or I watch the TV that's positioned right above the unit. I can bring in DVDs to watch too if I want. Luckily they have cable so I usually just watch HGTV and doze off and on for an hour and a half. No idea if it's working yet or how soon it will start working. I had baby doll take a picture of the hole in my neck on Sunday night so that I would have a benchmark. Remember, this is the fistula that was a pin prick that opened a few days before Christmas. Now it's the size of a nickel, if not bigger. Hence the need for the HBO treatments. I read that the HBO treatments main use is to help heal wounds that have been open for 4 weeks or longer and are not healing themselves. Anyway, I asked baby doll what the white thing is that I can see in the hole in the picture. He said it's something skeletal, he just doesn't know what. I also had Sammy look at the hole when she was here yesterday. She asked why she could see a screw inside of it. I was like OH! Dr. M told me that he could see the plate they used to fuse my jaw bone back together when he looked in the fistula. That must be what she's seeing too. Um. Gross?
Currently, Dr. M has me scheduled for a CT scan on Wednesday morning. It interferes with the HBO treatment though and I asked Janice if I could be bumped to a different time slot for the HBO but she said no, they're full that day. So, tomorrow I need to see if the CT scan can be moved. Dr. M scheduled the CT scan just to verify that there's no other, underlying reason for the swelling happening in my face. He's going to check on my juglar veins too to see how blocked they are and there was talk about removing them. He said he takes them out all the time, no problem. I was really glad Sammy came up to see me yesterday because when I repeated this to her, she was just as shocked as I was. We both thought that juglar veins keep you alive! Guess we're both wrong. I'm not going to worry about that whole thing until after the results of the CT scan. A secondary benefit of the scan is that it will look for cancer in my head and neck as well. I'm assuming I'll still be getting the full body PET scan in March to check for cancer but it's kind of nice to have a mini-scan in the meantime just to check on things.
So that's where my health stands at the moment. My next big worry is what to do about work. It looks like I could get to work by 10:30 - 10:40 each day after the HBO treatment but just thinking about trying to put in 40 hours after missing 2.5 hours every morning makes me sick to my tummy thinking about the energy levels needed to do that. Boss guy was already unhappy during the two weeks that I was back to work because he could tell the company wasn't getting 100% from me. Not that he was mean about it or anything, he's just trying to protect the interests of the company. Which is perfectly understandable but unfortunately, I was not only already doing the best that I could, I was doing too much since I was coming home with a fever almost every day. So, what are my options? Can I work part time? Can I afford to live on part time pay? Would my company even want me part time or would they rather be rid of me? What are my health insurance options if I'm part time? What does full time disability encompass? I'm assuming if I'm out on full time disability I definitely no longer have a job and the state is taking care of me? Does that come out of my social security benefits or something? Can I live on 60% of my salary? And again, what happens with health insurance? I really need to get some of these questions answered. I'm assuming I should start with our HR Dept. at work and hope they can steer me from there. That will be my project for the upcoming week though.
During round one with cancer, I had a list of health goals. Not sure if it makes sense to reinstate that. Here are some of the things I'm striving for:
- Healing of fistula in neck
- Healing of swampy areas on neck
- Healing of exposed jaw bone
- Healing of all open sores inside of mouth
- Alleviation of all swelling in face and neck
- Replacement of missing tooth
- Swallowing capability (no more drooling!)
- Food and drink consumption through mouth (no more PEG!)
- Better movement of head and neck, more mobility
- Cessation of hands falling asleep at night
- Cessation of off and on earaches
- Hearing returned to norm
- Speech or whatever will pass for speech
I feel like they are all really long term goals of at least 6 months - 3 years, rather than shorter term goals like the last set that I had. So it might be more depressing tracking them. It's unclear. One thing that I decided to start tracking last night was a general health barometer. Andy was telling me that his wife Kim gets these really bad migraines, then when they finally go away, she's up and running around at 150mph until a migraine lays her low again. He said it's hard to say if her over-doing it is helping to cause the migraines or not. I told him that I think I know how she feels. When I'm feeling good, I'm up, running around, trying to get a billion things done because I know that soon enough I'll feel like crap again and will be laid out flat on the couch doing nothing. And baby doll says the same thing about me. Is the fact that I'm up trying to accomplish so much part of the reason that I'm laid flat out again the next day? I don't know. And I don't know that I want to test the theory by wasting any of my feel good time. But I did decide to start charting my feel-goodness in general. I woke up at 2:30 this morning and felt awesome! I immediately sat down and e-mailed baby doll because I owed him a catch up e-mail and so long as I was feeling good, I figured it was a good time to get it sent. I went back to bed around 3:30 and was up again at 7:00 am. My jaw was killing me. Ouch. Ouch. Ouch. I made nice with the pain meds and crawled back into bed. I woke up again at 11:15 this morning. I felt so-so. Jaw was a little achey but ignorable, my face was doing the swelling thing though which is uncomfortable. So, I've mostly had a couch day today. I've been taking the pain meds every 4 hours on the dot to keep the jaw pain at bay because it's been nagging all day long. My hope is that by charting some of these generalities, I can start to see some kind of trend. We'll see. I'll report back after 4 weeks of tracking and let you know if I found anything.
So, the swelling. It's come back a few times but not nearly as bad as it was in the pictures I posted in my last blog. Twice it's come back bad enough where I feel my sight was too impaired to drive but otherwise, it's stayed somewhat under control. And just to be clear, Dr. M said lymphadema was his 'best guess'. And he used that exact phrase. For some reason one of my friends thought they knew exactly what was wrong with me which made me laugh. I'm not sure I ever get that definitive of an answer from anyone in the medical world,
The nose spray that Dr. M prescribed me is wonderful. I'm allowed to use it 4 times a day but I try to limit myself to once a day. a) I don't want to build up a tolerance to it (if that's even possible) and b) I'm okay with the fluids in my head finding an escape through my nose for the most part. It's just when I'm trying to sleep or don't have access to tissues that it gets annoying.
Huh, you might say. When would she not have access to tissues? Well, when I'm in the hyperbaric oxygen chamber for instance. They don't let you take ANYthing in there. I'm glad they at least let you wear a hospital gown. Two of them actually because it gets a little chilly in that tube. I had the tubes put in my ears on Monday. That was a little uncomfortable and not quite what I expected, as usual. I find that I don't ask enough questions any more. I'm so resigned to everyone and everything prodding and poking me in any manner possible that I just don't care any more. So, some totally new doc, Dr. N, numbed up my ear drums, then sliced a hole in each of them and stuck a little tube in. Supposedly they will fall out on their own ~ 6 months from now. I will likely not even notice when it happens. Meanwhile, my hearing has become kind of muffled, distancy and echoey. No idea if that's normal or not. No idea if that will go away as my ear drums heal and the tubes fall out or what. Whatever. It's a question I will eventually remember to ask of someone, somewhere along the way. HBO treatments started on Tuesday morning. The first one sucked. Janice, the nurse on duty, took away my drool washcloth and gave me one of theirs to use instead. By the time my hour and a half session was up, I was nauseous and my tongue was burning. I asked her if they use detergent and bleach on their washcloths. She said, of course. Um, okay. I told her that wasn't cool that I had it in my mouth for almost two hours and that from here on out, I'd be keeping my own washcloth, thank you very much. She winced. I think she realized the mistake we made with that and I've been allowed to keep my own washcloth ever since. The treatments themselves are okay. You know when you go to the drive-thru teller at the bank and they have those little containers that you stick your banking in that then get sucked up the tube and into the building? Imagine a life size version of the little container. I lay down on a gurney and get loaded into a glass coffin basically. They pressurize it and then I either nap or I watch the TV that's positioned right above the unit. I can bring in DVDs to watch too if I want. Luckily they have cable so I usually just watch HGTV and doze off and on for an hour and a half. No idea if it's working yet or how soon it will start working. I had baby doll take a picture of the hole in my neck on Sunday night so that I would have a benchmark. Remember, this is the fistula that was a pin prick that opened a few days before Christmas. Now it's the size of a nickel, if not bigger. Hence the need for the HBO treatments. I read that the HBO treatments main use is to help heal wounds that have been open for 4 weeks or longer and are not healing themselves. Anyway, I asked baby doll what the white thing is that I can see in the hole in the picture. He said it's something skeletal, he just doesn't know what. I also had Sammy look at the hole when she was here yesterday. She asked why she could see a screw inside of it. I was like OH! Dr. M told me that he could see the plate they used to fuse my jaw bone back together when he looked in the fistula. That must be what she's seeing too. Um. Gross?
So that's where my health stands at the moment. My next big worry is what to do about work. It looks like I could get to work by 10:30 - 10:40 each day after the HBO treatment but just thinking about trying to put in 40 hours after missing 2.5 hours every morning makes me sick to my tummy thinking about the energy levels needed to do that. Boss guy was already unhappy during the two weeks that I was back to work because he could tell the company wasn't getting 100% from me. Not that he was mean about it or anything, he's just trying to protect the interests of the company. Which is perfectly understandable but unfortunately, I was not only already doing the best that I could, I was doing too much since I was coming home with a fever almost every day. So, what are my options? Can I work part time? Can I afford to live on part time pay? Would my company even want me part time or would they rather be rid of me? What are my health insurance options if I'm part time? What does full time disability encompass? I'm assuming if I'm out on full time disability I definitely no longer have a job and the state is taking care of me? Does that come out of my social security benefits or something? Can I live on 60% of my salary? And again, what happens with health insurance? I really need to get some of these questions answered. I'm assuming I should start with our HR Dept. at work and hope they can steer me from there. That will be my project for the upcoming week though.
During round one with cancer, I had a list of health goals. Not sure if it makes sense to reinstate that. Here are some of the things I'm striving for:
- Healing of fistula in neck
- Healing of swampy areas on neck
- Healing of exposed jaw bone
- Healing of all open sores inside of mouth
- Alleviation of all swelling in face and neck
- Replacement of missing tooth
- Swallowing capability (no more drooling!)
- Food and drink consumption through mouth (no more PEG!)
- Better movement of head and neck, more mobility
- Cessation of hands falling asleep at night
- Cessation of off and on earaches
- Hearing returned to norm
- Speech or whatever will pass for speech
I feel like they are all really long term goals of at least 6 months - 3 years, rather than shorter term goals like the last set that I had. So it might be more depressing tracking them. It's unclear. One thing that I decided to start tracking last night was a general health barometer. Andy was telling me that his wife Kim gets these really bad migraines, then when they finally go away, she's up and running around at 150mph until a migraine lays her low again. He said it's hard to say if her over-doing it is helping to cause the migraines or not. I told him that I think I know how she feels. When I'm feeling good, I'm up, running around, trying to get a billion things done because I know that soon enough I'll feel like crap again and will be laid out flat on the couch doing nothing. And baby doll says the same thing about me. Is the fact that I'm up trying to accomplish so much part of the reason that I'm laid flat out again the next day? I don't know. And I don't know that I want to test the theory by wasting any of my feel good time. But I did decide to start charting my feel-goodness in general. I woke up at 2:30 this morning and felt awesome! I immediately sat down and e-mailed baby doll because I owed him a catch up e-mail and so long as I was feeling good, I figured it was a good time to get it sent. I went back to bed around 3:30 and was up again at 7:00 am. My jaw was killing me. Ouch. Ouch. Ouch. I made nice with the pain meds and crawled back into bed. I woke up again at 11:15 this morning. I felt so-so. Jaw was a little achey but ignorable, my face was doing the swelling thing though which is uncomfortable. So, I've mostly had a couch day today. I've been taking the pain meds every 4 hours on the dot to keep the jaw pain at bay because it's been nagging all day long. My hope is that by charting some of these generalities, I can start to see some kind of trend. We'll see. I'll report back after 4 weeks of tracking and let you know if I found anything.
Thursday, February 6, 2014
February 6
Recently I read an article that was talking about how dogs don't remember yesterday, that they're always living in the moment. I only got a couple sentences in and I was immediately thinking the author was full of shit. Case in point. Both my dogs are rescue dogs. Jack was a year and a half old when I got him and Freedom was 2 years old. I don't have a lot of details about their lives before they came to me. I was told that Jack and his littermates had been tossed over the side of a motorboat in the middle of a lake and then got swept into the propeller. Only two of them survived, rescued by some witnesses of this heinous action. Jack had to get a lot of stitches to piece him back together. The foster mom of Jack told me that he's a bit possessive and that he would be better off in a single dog household. I didn't listen to her. A month or so later I adopted Freedom. His owner had found him wandering the streets as a puppy. She was moving and her new landlord didn't allow pets. According to my vet, the reason Freedom has no hair on any of his joints is because he spent about 20 hours of every day in a cage. His owner kind of backed this up with all her complaints about how he couldn't be loose when she wasn't home because he would chew everything in sight. So, they both had some issues in their past. Yesterday, I'm laying in bed trying to take a late morning nap. Freedom is in the dog bed next to my bed. Jack is downstairs on the couch. Whining. I laid there for a good 10 minutes listening to him whine and getting more and more angry about it. I knew exactly why he was whining. Something had changed in the living room and he didn't like it. He was too scared to walk past it and join us in the bedroom upstairs so he was crying about it. I wasn't sure if it was the laundry basket that I left on the coffee table or the small, 12" x 24" x 2" box that UPS delivered that I left on the floor near the front stairs. I finally got out of bed and trudged down the stairs. I was channeling a majority of parents from the 70's and 80's. The word bubble over my head said "You think you have something to cry about?? By golly I'm about to GIVE you something to cry about.". And I proceeded to spank his ass. I then turned around and went back up the stairs and went to bed. Two minutes went by. Jack jumped off the couch. He walked past the laundry basket no problem. He got to the small, cardboard box. His step skittered a little but he safely made it past. He came up the stairs, walked over to the dog bed and curled up with his brother. I would like to state that I've had Jack for over 8 years and not once on my watch has a cardboard box attacked him. So don't tell me that dogs don't hold on to things and that they live in the moment. That's a bunch of crap,
Reader's Digest has a contest going on right now. They want you to write a true life story about yourself in 100 words or less. I brought it to baby doll's attention. One of the things that attracted me to him right from the start is his love of writing. We still e-mail each other almost daily and we've been dating for over a year now. Sure enough, he was up for the challenge. He's submitted four different entries so far compared to my single entry. His latest entry was his best one yet. He described the experience he had stopping at the grocery store on Super Bowl Sunday. It made me laugh. He's so creative. My entry wasn't nearly as good but it's mine, so I'm allowed to share:
Okay, enough stalling. I've had a really crappy week. Last Thursday I came home from work with a slight fever, as usual. Friday morning I woke up with it which was not usual. I was also hugely nauseous. I called into work sick. Fever and nausea finally dissipated late Saturday afternoon. But I was very fatigued and my face seemed to be swelling more than usual. Sunday afternoon I showered and brushed my teeth so that I could get some solid sleep and be prepped for work on Monday. When I brushed my teeth I managed to dislodge a glob of what looked like flesh and there was a LOT of blood. Whatever. I ignored it because there really wasn't anything I could do about it. I then woke up in the wee hours of the morning in excruciating pain from my jaw where I had dislodged the UFO AND unable to see because my face had swollen so much that I couldn't open my eyes. VERY scary. Baby doll ended up waking up and I started bawling all over him. I had been up for over an hour at that point trying everything to make the pain stop. (Thank god I don't own a gun because I really would have been tempted!) I had used my lidocaine, I had taken Excedrin, I tried an ice pack, I used the OraMagic mouthwash. I had already taken 10 ml of oxycodone and I finally took another 20 ml in the hopes that it would simply knock me out. It finally did. Obviously I did not make it to work on Monday.
I finally got the pain back under control but what was up with the swelling?? Seems like it was an allergic reaction to something. The only new thing that I could think of was that I had started taking Excedrin instead of the liquid children's pain meds that I usually took. So, I stopped taking the Excedrin. I woke up at 5:15 Tuesday morning and the swelling was WAY down. Yay! I discovered the problem and alleviated it! I took some oxy and some liquid acetaminophen and went back to bed. Woke up a few hours later with my head the size of a watermelon again. WTH?? Decided that maybe I had poisoned my liver and that I should stop taking the acetaminophens. Didn't help. Then I realized that I had switched brands of detergents a few weeks back. I switched back to my usual stuff and re-washed everything in the house. Didn't help. I decided that the Jevity was making me a little nauseous whenever I ate so maybe I had gotten a bad batch of it so I switched over to the Carnation Instant Breakfast stuff. Didn't help. UGH! Here's some pics of me on Tuesday and Wednesday.
My eyes are actually open in that second picture. I had about 10% visibility yesterday. Bleah. So I had an appointment with the doc today at 1:00. Kit was kind enough to drive my butt in because the swelling sometimes occurs mid day for no apparent reason.
First I met with Nurse Jo Ann and Dr. Brendan. I walked them through all of the variables that I had tested out. Dr. Brendan was impressed. He said he wasn't sure what else to try. I asked him if it made sense to give me a dose of steroids. If it helped, I would think that would point to it being an allergic reaction. If it didn't help, then it must be something else. He thought that sounded like a good idea and said he would run it past Dr. M.
So then Dr. M came in. He doesn't think it's allergies at all. He thinks it's lymphadema which is pretty common in cases like mine, according to him. He said they've removed pretty much every lymph node I own from my neck and on top of that they've radiated it twice, burning the heck out of anything that was left behind so now the fluids in my head and face have nothing guiding them to leave the area. He said it will take a few months for the fluid to find new pathways to escape through. He said that sometimes the juglar veins take over some of the work but they often get clotted and become useless. He did a quick sonogram on the left side of my neck and said it's partially blocked on that side. He said my nose is probably running like a faucet because mucus membranes are nice and thin so some of the liquid is managing to find it's way out my nose. I complained that I've been having to sleep with tissues shoved up my nostrils, otherwise my nose runs down my face all night long keeping me awake. He's going to prescribe some nose spray that will help dry it up at night. He also showed me how to gently massage my face to help move the liquid out and away from my eyes. He said I should do that a few times a day to try and keep things moving. He said it would also help if I tried to sleep in a slightly more upright position. Meanwhile, the underlying message is that it's just going to take time. He's going to schedule me for a CT scan just to make sure there's nothing funky going on that he may have missed but he's pretty sure it's as simple as lymphadema. I was also supposed to get the ear tubes placed this past Monday and start the HBO treatments on Tuesday. I had canceled both those things when this whole mess started happening. One of the specific questions they had asked me at the HBO place was if I had a sinus infection. If you have one of those, you shouldn't get the HBO treatments until it clears up. A sinus infection was definitely on my list of things that could be wrong with me so I postponed that whole end of things. Dr. M checked my sinuses though and ruled that out as well.
So, I have a new appointment on Monday to get the ear tubes placed. I'm waiting to hear back from the HBO place to find out when I can once again start those treatments. I also made sure to tell them that things were going to be tricky because if I wake up not being able to see, I'm obviously not going to be able to drive in for the session. If they give me the 8:00 AM session then baby doll might be able to drop me off before he heads to work. I can then have the front desk call me a cab to take me home. All of that hinges on if it's a night that baby doll actually stays over. The whole thing is going to be a PITA. I asked if it made sense to wait a couple of weeks for the face swelling thing to settle. Dr. Brendan said no. First, the HBO treatments might actually help with the face swelling. This surprised me. You would think putting even more pressure on my head would be a bad thing but I guess not. Second, the fistula under my chin is still getting progressivley worse and the HBO treatments will definitely help that so I should delay as little as possible.
Meanwhile, I haven't gone to work all week. Dr. M wrote out a note stating that I am unable to work as of 2/3 due to complications with my eyesight and that I need to be out of work indefinitely. Baby doll called the insurance place and let them know the same thing. I still have 5 weeks of short term disability that I can use. Hopefully I don't need that long but I have no idea what to expect with this swelling crap. Not only does it change daily, it changes all during the day too! So I can wake up and be fine but a few hours later my vision could be down to 30%. Super depressing to take that big of a step backwards too. Work was exhausting me but it felt so good to be back at it and working towards building up stamina and getting back into a routine. Now I feel like I'm in limbo again. I'm starting to better understand what Dr. C meant when he talked about how far my quality of life would degrade. This time last year I was training to run a 5k. This year I'm not sure I've even set foot on the road to recovery yet. I feel like new bad stuff is happening all the time.
Okay, that's the health update for the week. My buddy Andy should have touched down here in Rochester an hour ago. I'm still planning on having poker at my house tomorrow night, even if I can't play. The least I can do is provide the pizza and beer for Andy's homecoming game. I can't wait to see him!
Reader's Digest has a contest going on right now. They want you to write a true life story about yourself in 100 words or less. I brought it to baby doll's attention. One of the things that attracted me to him right from the start is his love of writing. We still e-mail each other almost daily and we've been dating for over a year now. Sure enough, he was up for the challenge. He's submitted four different entries so far compared to my single entry. His latest entry was his best one yet. He described the experience he had stopping at the grocery store on Super Bowl Sunday. It made me laugh. He's so creative. My entry wasn't nearly as good but it's mine, so I'm allowed to share:
Flag Day, 2012 I was told that I have cancer. He was
involved in a roll over vehicle accident. I had surgery and came out a little
worse for wear. So did he. I healed and celebrated by going to a Renaissance
Festival. He was there that same day, celebrating with his daughter. I started
radiation therapy. He started physical therapy. I counted down to September 25th
with glee for the end of treatments. He counted down to the same date, his
daughter’s birthday. I posted an ad on a dating website. He answered. We’ve
been simpatico ever since.
Okay, enough stalling. I've had a really crappy week. Last Thursday I came home from work with a slight fever, as usual. Friday morning I woke up with it which was not usual. I was also hugely nauseous. I called into work sick. Fever and nausea finally dissipated late Saturday afternoon. But I was very fatigued and my face seemed to be swelling more than usual. Sunday afternoon I showered and brushed my teeth so that I could get some solid sleep and be prepped for work on Monday. When I brushed my teeth I managed to dislodge a glob of what looked like flesh and there was a LOT of blood. Whatever. I ignored it because there really wasn't anything I could do about it. I then woke up in the wee hours of the morning in excruciating pain from my jaw where I had dislodged the UFO AND unable to see because my face had swollen so much that I couldn't open my eyes. VERY scary. Baby doll ended up waking up and I started bawling all over him. I had been up for over an hour at that point trying everything to make the pain stop. (Thank god I don't own a gun because I really would have been tempted!) I had used my lidocaine, I had taken Excedrin, I tried an ice pack, I used the OraMagic mouthwash. I had already taken 10 ml of oxycodone and I finally took another 20 ml in the hopes that it would simply knock me out. It finally did. Obviously I did not make it to work on Monday.
I finally got the pain back under control but what was up with the swelling?? Seems like it was an allergic reaction to something. The only new thing that I could think of was that I had started taking Excedrin instead of the liquid children's pain meds that I usually took. So, I stopped taking the Excedrin. I woke up at 5:15 Tuesday morning and the swelling was WAY down. Yay! I discovered the problem and alleviated it! I took some oxy and some liquid acetaminophen and went back to bed. Woke up a few hours later with my head the size of a watermelon again. WTH?? Decided that maybe I had poisoned my liver and that I should stop taking the acetaminophens. Didn't help. Then I realized that I had switched brands of detergents a few weeks back. I switched back to my usual stuff and re-washed everything in the house. Didn't help. I decided that the Jevity was making me a little nauseous whenever I ate so maybe I had gotten a bad batch of it so I switched over to the Carnation Instant Breakfast stuff. Didn't help. UGH! Here's some pics of me on Tuesday and Wednesday.
First I met with Nurse Jo Ann and Dr. Brendan. I walked them through all of the variables that I had tested out. Dr. Brendan was impressed. He said he wasn't sure what else to try. I asked him if it made sense to give me a dose of steroids. If it helped, I would think that would point to it being an allergic reaction. If it didn't help, then it must be something else. He thought that sounded like a good idea and said he would run it past Dr. M.
So then Dr. M came in. He doesn't think it's allergies at all. He thinks it's lymphadema which is pretty common in cases like mine, according to him. He said they've removed pretty much every lymph node I own from my neck and on top of that they've radiated it twice, burning the heck out of anything that was left behind so now the fluids in my head and face have nothing guiding them to leave the area. He said it will take a few months for the fluid to find new pathways to escape through. He said that sometimes the juglar veins take over some of the work but they often get clotted and become useless. He did a quick sonogram on the left side of my neck and said it's partially blocked on that side. He said my nose is probably running like a faucet because mucus membranes are nice and thin so some of the liquid is managing to find it's way out my nose. I complained that I've been having to sleep with tissues shoved up my nostrils, otherwise my nose runs down my face all night long keeping me awake. He's going to prescribe some nose spray that will help dry it up at night. He also showed me how to gently massage my face to help move the liquid out and away from my eyes. He said I should do that a few times a day to try and keep things moving. He said it would also help if I tried to sleep in a slightly more upright position. Meanwhile, the underlying message is that it's just going to take time. He's going to schedule me for a CT scan just to make sure there's nothing funky going on that he may have missed but he's pretty sure it's as simple as lymphadema. I was also supposed to get the ear tubes placed this past Monday and start the HBO treatments on Tuesday. I had canceled both those things when this whole mess started happening. One of the specific questions they had asked me at the HBO place was if I had a sinus infection. If you have one of those, you shouldn't get the HBO treatments until it clears up. A sinus infection was definitely on my list of things that could be wrong with me so I postponed that whole end of things. Dr. M checked my sinuses though and ruled that out as well.
So, I have a new appointment on Monday to get the ear tubes placed. I'm waiting to hear back from the HBO place to find out when I can once again start those treatments. I also made sure to tell them that things were going to be tricky because if I wake up not being able to see, I'm obviously not going to be able to drive in for the session. If they give me the 8:00 AM session then baby doll might be able to drop me off before he heads to work. I can then have the front desk call me a cab to take me home. All of that hinges on if it's a night that baby doll actually stays over. The whole thing is going to be a PITA. I asked if it made sense to wait a couple of weeks for the face swelling thing to settle. Dr. Brendan said no. First, the HBO treatments might actually help with the face swelling. This surprised me. You would think putting even more pressure on my head would be a bad thing but I guess not. Second, the fistula under my chin is still getting progressivley worse and the HBO treatments will definitely help that so I should delay as little as possible.
Meanwhile, I haven't gone to work all week. Dr. M wrote out a note stating that I am unable to work as of 2/3 due to complications with my eyesight and that I need to be out of work indefinitely. Baby doll called the insurance place and let them know the same thing. I still have 5 weeks of short term disability that I can use. Hopefully I don't need that long but I have no idea what to expect with this swelling crap. Not only does it change daily, it changes all during the day too! So I can wake up and be fine but a few hours later my vision could be down to 30%. Super depressing to take that big of a step backwards too. Work was exhausting me but it felt so good to be back at it and working towards building up stamina and getting back into a routine. Now I feel like I'm in limbo again. I'm starting to better understand what Dr. C meant when he talked about how far my quality of life would degrade. This time last year I was training to run a 5k. This year I'm not sure I've even set foot on the road to recovery yet. I feel like new bad stuff is happening all the time.
Okay, that's the health update for the week. My buddy Andy should have touched down here in Rochester an hour ago. I'm still planning on having poker at my house tomorrow night, even if I can't play. The least I can do is provide the pizza and beer for Andy's homecoming game. I can't wait to see him!
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