Thursday, March 27, 2014

March 27

Hey, me not posting for a week is a GOOD thing. I'm back to feeling normal and have no need to babble every day to get stuff out of my head. :-)

I don't know if it's the meds kicking in, or the latest tweak made to my thyroid medication, or the arrival of warmer weather, or the consumption of real food..........but I'm a happy, energetic girl once again. Finding joy in the small things. It makes me laugh that when Ethan or Sterling come in from being outside for a couple of hours they need some immediate love-loves. Like I'm congratulating them for making it back home safely or something. They are some weird and funny cats. I love the feel of my incredibly sexy and sweet man pressed up against my side in bed at night. I enjoy chasing down a new low cal/fat recipe to surprise baby doll with for his drive to look super hot this summer in a bathing suit. I have fun sitting down and zoning out for a few hours playing my mindless little computer games. My recent favorite I found on Big Fish called Northern Tale. Dr. Singh's smile. My snowbells coming up. Amazon settling a court case and giving me an $80 credit towards free books. Life is good.

I forgot to mention one other thing that Dr. M is doing next Wednesday. He's going to stretch my esophagus. I've read a LOT about that procedure. I guess it's pretty normal for larys to have to go get it done. So, that's four action items for next week. Take out hardware from neck (jaw), fix ear tube, check TEP, and stretch esophagus.

Tomorrow I go get my PET scan. Yesterday morning I got a phone call talking about some appointment at 9:45 today. I knew I had a 9:15 and a 10:30, I didn't know anything about a 9:45. I then listened to the other two messages that were on my machine and the dimwit in Dr. M's office (Melissa) scheduled my PET scan for today. Even though my chart clearly shows I had 3 other appointments this morning. I was pissed. Baby doll called and got the PET scan moved to tomorrow for me but I'm just irritated by the total incompetence from some people. This isn't the first time she's double booked me. I heard they hired a new scheduler. I wish they would assign me to her. Maybe she'll be better.

Today I saw Dr. Singh. Nothing to report other than he's still adorable. I bumped into Joanna. She's happy that I gained some weight. More on that in a minute. I stopped in to see Jo Ann and drop off some long term disability paperwork to her. I picked up some ear drops. I got my port flushed and then had some blood taken for lab work and an EKG taken. Phew. It was a busy morning!

So I've been doing a smoothie or two every day for the past week now and I went from 107 up to 111! Woo hoo! And you wouldn't believe what I'm throwing into the blender. I had a smoothie earlier this week that had in it:

- half a can of pineapple chunks
- half a can of peaches
- a handful of maraschino cherries
- blueberries
- strawberries
- an orange
- a banana
- protein powder
- angel food cake
- milk
- apricot preserves

That blender was filled right to the top! Baby doll is amazed that I can syringe an entire blender of liquid into my tummy. He doesn't think I should be able to fit that much in there. LOL! I've also been doing a chocolate, peanut butter, banana smoothie too. I might not be able to taste anything but it's fun making these concoctions, and I can imagine what each ingredient tastes like so it's all good.

Baby doll did one of those things last night that was a very simple and small thing but meant the world to me and once again highlights the type of human being he is. I usually just use a damp sponge on my kitchen counters and once in a while I break out the Windex. I was in Wegman's the other day buying SOS pads and I noticed these Clorox anti-bacterial wipes. I grabbed a package of them. Instead of the damp sponge I now grab a wipe and I'm feeling much more hygienic in the kitchen. Baby doll commented last night that they have a nice, light citrus smell to them which took me by surprise. It didn't even occur to me that they might have a scent. So I started to wave it in front of my nose and he immediately came hurrying over to blow on it to see if that would help me catch a scent. How freakin' sweet was that? He didn't even think about it, just came running to the rescue. God I love that man.

And so long as I'm singing his praises, have I mentioned lately that it's been over a year and I still always have fresh flowers on my kitchen table, courtesy of the light of my life? And sometimes he can't find a bouquet that he likes so he'll just pick up two random sets of flowers in the hopes that they look good together in a vase. The ones from this past week were gorgeous! Check them out.

I was told today that I was approved for Medicaid. So I guess I once again have insurance which is good. Especially with the upcoming surgery! Now I'm just waiting to see what's going on with long term disability. Having zero income is a little scary and my $3,000 that I have in the bank isn't going to go very far.

I went to the Home and Garden show for a few hours this past Sunday with Sushi-guy. It wasn't all that I thought it would be but I still had fun. We watched this awesome pots and pans demonstration. I SO wanted a set of those things up until I heard the price. $2,000!! Can you imagine?? For some pots and pans! Yeesh. The guy mentioned something pretty interesting as he was shaving some parmesan cheese for the salad he was making. He said that the well known parmesan cheese in the green bottle has an ingredient in it called "cellulose powder". It's put in there to prevent clumping. He said cellulose usually refers to wood. So basically, they're putting sawdust in your cheese and selling it to you. I was a little horrified. I went to Wegman's the next day and sure enough, he's right. Then I started pricing things. For the fresh parmesan that Wegman's grates on site, it costs $19.99/pound and there's no sawdust in it. For the pre-packaged stuff that Wegman's sells, it has sawdust in it and it's only $5.39 per pound. Holy crap! I found a good middle ground. I found a brand called 4C that doesn't have sawdust in it and it costs $9.00 per pound. I will be purchasing that from here on out. Baby doll said he's eaten sawdust all his life and he doesn't mind. That's good because I have a couple of the bottles of green stuff in my house. I'm going to hurry up and use it on him and hopefully by the time I'm able to eat again it will be gone and I can enjoy the 4C stuff. :-)

Sush and I also swung by the Canandaigua culinary booth twice while they were cooking so that he could sample some yummy cuisine. Although he seemed more impressed with the chicken breast that the pots and pans guy made. He said it was fabulous! I made it for baby doll on Tuesday night and he said it was definitely tasty. It was just a roasted breast with a lemon squeezed onto it and then some oregano and sesame seeds tossed on. Pretty easy but I guess it has a really good flavor!

Sush had me wetting myself at one point. I was telling him that Ethan will jump onto people's laps and then not bother to keep himself there, he starts to slide off, and he won't catch himself, he fully expects the person that he's sitting on to catch him. He did this to Jamie when he was over for dinner last week. Jamie was like screw that, I'm not catching him, he can catch himself. But in the end, when Ethan started to slide, Jamie caught him (sucker!). Anyway, I was telling Sush about Ethan pulling this crap and he said it sounds like what Ethan has is "Pretty Girl Syndrome". That sums it up so absolutely perfectly! That is EXACTLY what Ethan has. It made me laugh that he totally called it.

I'm not a sweets person and I definitely don't care very much for chocolate. I always ordered an appetizer, rarely dessert (unless they had creme brulee!). I always kept a drawer full of candy for the guys that I worked with but had no trouble not eating any of it myself because it simply didn't interest me. So, the exception to this rule is Easter candy. I LOVE Cadbury mini eggs. I could easily eat half a bag of those things in a sitting. I'm also a huge fan of the Cadbury creme eggs. So while I was at Wegman's I lost a little control. 

I now have this stashed away. I'm hoping by the end of summer my neck will be fully healed and I will be starting to eat stuff. I'm going to start a countdown to crunching a mini egg........ 

Thursday, March 20, 2014

March 20

Well, today was a long and somewhat sucky day. Finally got to see Dr. M about these damn screws poking up through my skin. He agrees that no amount of HBO treatments is going to help what I have going on there. So first he talked about a two part plan. He can't just take skin from my leg and graft it up there because there's nothing to graft it to. There's no more blood supply available. So he's going to take flesh from my right shoulder, and flop it over to cover up the hole. That way it will have its own blood supply because it will still be attached to me. Once it adheres to the hole and starts setting up its new home, I then go in for a second surgery where he cuts the flesh loose from my shoulder at which point that can then heal. Yeah, I started crying. Not just one surgery but two. I'm not a happy camper. And it sounded awful from the way he was describing it. Although he then said that in the past year or two, this is what they've been doing instead of taking the forearm flesh like I had done in my first surgery. He said it's the new up and coming thing because it's less invasive and less risky that the forearm flesh flap. OH. Well, when you put it like that, it doesn't sound so bad. Meanwhile he felt bad that I had started crying so he threw me a bone. He said the important thing would be to get the plate and screws out of my jaw. They seem to be what broke through the skin in the first place. He said that we can do five more HBO treatments, which would take me to 30, remove the plate and screws, and then do the last ten HBO treatments and see if my neck heals on its own. I like that plan much better. I don't think my neck has a snowball's chance in hell at healing on its own but I think it would be nice to let it try. He said the only downside to doing that is that I'm going to have to be patient because it's going to take more time. That's all I seem to have nowadays so I'm okay with the extra 4 weeks of seeing if it will heal itself. I'm only 44 years old and this usually happens to men over 65. You'd think my body would buck up a little and show them what's what! So, first surgery is scheduled for Wednesday, 4/2. I don't have to spend the night, it's just a day for the surgery. Baby doll and I leave on Friday for Toronto to see the Yankee's. Hopefully I'll be just fine to travel.

Other sundry stuff. I told him that I was cleaning my ears last weekend and the left one started bleeding and I wasn't sure why. Turns out the tube in that ear has come partway out. He's going to fix it while I'm 'out' on 4/2. I told him my TEP doesn't seem to be working. He's going to take a look at that during surgery as well. He looked at the weird scratch on my ear. He has no clue what it is, other than a weird scratch. He's getting the PET scan scheduled. I think that was about it for him.

Joanna, the nutritionist, came to see me. I told her I started switching over to smoothies this week along with some Jevity. I told her about losing my job, and so my insurance as well. First, she showed me a website where people have tube feeding supplies that they've donated. So, if I pay for shipping, it looks like I can still get the prescription food if I wanted to. She also gave me some printouts about foods that I can stick in a blender and then put through my tube and what the nutritional values are and what I should be getting each day. It was perfect! I was looking for just such a thing on the web the other day but didn't have much luck so I should be good to go.

Then Lizzett came in and got me. We went to her office where she called in a coworker who funnily enough, they call Q. They then filled out some online form for me together while asking me for details about some of the questions asked, as needed. She said she should know within 24 hours if I qualify to be on Medicaid or not. That would be a load off my mind if that happened tomorrow afternoon. Fingers crossed for that.

I still need to go get an EKG and some blood work done but by the time I was done with Lizzett I was beat. So, I just came home. I can swing by again tomorrow after my HBO and clean up those last details before the surgery.

So that was my day. I am now going to head in and crash on my couch. I'm zonked! 

Wednesday, March 19, 2014

March 19

So baby doll went with me to my appointment to see Dr. K Monday night. He said he understands why I love her so much. She's very sweet. Nothing of note to report. Once again my thyroid levels are out of whack and we are tweaking my meds yet again. I'm pretty sure that this is one of those things that's simply never going to fall back into line. She said if two months from now we still haven't dialed it in, she can send me to an endocrinologist or something like that. Whatever. I think if it's still not dialed in two months from now I'm just going to say screw it and live with it however it is. I printed out the report of my levels since February 2013. The normal range is .27 - 4.20. Last Feb when there was no sign of the second tumor and all was right with my world I tested at a healthy 2.54. Then after my first surgery in August but before my second surgery in Sept my level shot up to 47.24! They got me on some meds, stat, and in Oct it went down to .13. Too low. We tweaked. In Nov it was 10.39. Too high. We tweaked. In Dec it was 7.53. Still too high. We tweaked. On Monday it was down to .24. Pretty darned close to being in range on the low end. I'm surprised she still wants to fiddle but I'll do it for one more 8 week stint. We talked about my depression too. She thinks the Effexor is a good choice for me because supposedly it provides pain relief as well as relieves depression which is a bonus for me. She said the amount that I'm on is still a really low dose and she wouldn't be surprised if he increases it after a couple of weeks. I told her about the weird sleeping/nausea thing at the end of last week. She said the nausea could definitely have been caused by the Effexor, it's one of the main side effects but she said not the sleeping part. If anything, Effexor usually hypes people up and causes insomnia. So, maybe it really was a bug that's going around. I've noticed on FB that a bunch of my friends are suddenly under the weather and they feel like they were run over by a bus which is exactly how I felt.

The medical supply company is refusing to ship the next 30 day supply of 'food' to me because they don't know where to charge it to with my insurance being up in the air. I'm pretty sure I'm going to pony up the $600/month for the COBRA for a month or two until Lizzett and I figure out what's going on with insurance coverage and disability money.

That was a comment that Dr. K made on Monday night that made me feel a little better. She said that she normally doesn't recommend ANYone go on disability but she thinks disability was put in place for exactly the situation that I find myself in. She's glad that I went ahead and filed for it last week and she said if I need any help whatsoever with doctor paperwork, to let her know, she's happy to fill stuff out for me.

Baby doll then commented that I tried to go back to work for a week and a half and that it was simply too much. He said that between the treatment appointments, doctor appointments, medication schedule, and feeding schedule, keeping my body upright and alive is a job unto itself. He spoke the truth but hearing it stated so baldly kind of bummed me out. That's why I was asking a blog or two ago, what do you get up for each morning. I think I've kind of lost sight of why I get up each morning other than to take medicines, pump food into my stomach, and visit sundry medical personnel. I was watching HGTV the other day (of course! and by the way, did you know they have a magazine now?? Yes, I splurged and got myself a subscription, I couldn't resist!) and they had this dude from France who wanted to move to Nepal, buy a farm, and start making cheese. He had $20k. And not for nothing, he did it. I was blown away. I would LOVE to do something like that. The thing is, when you're healthy, the potential is there. Not the likelihood mind you, but the potential. Pre-cancer, there was a chance I could go to cheese school and start up a cheese farm in Nepal. Post-cancer, there's not a snow ball's chance in hell. I can't blow up a balloon, or call in to a radio show to win a prize, I'll never yell Bingo at a church social again, or go white water river rafting. There's so much potential that has been taken away from me that it's really hard to see things to look forward to. I think that's where a chunk of my depression is coming from. That and the fact that nothing seems to be getting better. I've been going to those HBO treatments for 5 weeks now and the hole in my neck is worse instead of better. If I could just get that damned thing healed I could work on my swallowing which will hopefully, eventually lead to eating again at some point in time. Tomorrow is my big appointment with Dr. M. We'll see what he has to say and I need to push him to get a PET scan on the calendar. Is the damn cancer gone or not? Maybe that's why I'm not seeing any improvements. Maybe I'm fighting a losing cause in which case I really need/want to know about it.

Okay, back on track, where was I before I rambled off on tangents? 

Oh! So, Upstate doesn't want to send me food so I decided to go back to making myself smoothies. Dr. A had told me way back when that if I ate (4) of those CBD's a day that I would be getting all the nutrition my body needs. So last night I made myself a big fat smoothie. I tossed in whole milk, a strawberry CBD, a handful of strawberries, and a big scoop of weight gain protein powder. It's like 550 calories a scoop! Even though I can't taste what's going in my tummy I figured my stomach is probably bored out of its mind by this point in time with that Jevity crap. Today I stopped at Tops, they had all sorts of B1G1 free fruits so I stocked up. Today's smoothie was whole milk, protein powder, vanilla CBD, blueberries, and a blueberry Greek yogurt. It sure looked good! I also bought some ice cream, bananas, raspberries, strawberries, blackberries, and avocados to beef things up as the week progresses. Which reminds me, baby doll got the wine rack hung (he did a fantastic job!) and I've made my new kitchen cart my smoothie making station. Check it out.

So the inside of my house is as tweaked as it's going to get for now. I just need the warm weather to get here so that I can start cleaning up the yard and building my veggie garden. BTW: Still no sign of my eggplant seedlings. My friend G thinks the soil isn't warm enough. I'm going to have to ponder how to fix that.

I have high hopes that warmer weather should be arriving soon because tomorrow is the first day of Spring! Woo hoo! Tonight's the night Jamie is coming over for a celebratory grilling. I'm doing up a bunch of kabobs. Whiskey chicken, Cajun shrimp, and grilled veggies all on a bed of some mardis gras rice. Yum! (Have I mentioned how much I miss eating?? I told Sush that if I had a choice between either being able to talk or being able to eat, I would choose to eat. I know that talking would get me a hell of a lot more out of life but I don't care, I am just too passionate about food!)

Speaking of Sush, he's going to keep me company at the Home and Garden Show on Sunday so that I can check it out with someone's arm to hold onto. I've noticed that I can only hold my head up for so long before I start to feel the strain and I have to look down at the floor. It's very useful to have someone with me when I go places so that I can simply put my head down, hold onto their arm, and trust them not to let me get runover or walk into anything. You should have seen me trying to admire the wine rack after baby doll got it hung up last night. I had to stand all the way across the kitchen and lean way back just to get my head high enough to see the darned thing! Ugh.

Not sure what was up with the wind today but I actually smelled something TWICE! It was very exciting. The first time was when I was leaving the HBO place. I believe it was my hair that I smelled. I took a shower this morning and I'm not sure how well I rinsed out the shampoo. I got a big whiff of it walking to my car. Smelled pretty good! The second time was when I was leaving Tops. Another gust of wind. This time I smelled a garbage can that needed to be emptied. Wasn't the most pleasant smell but not awful either and hey, I was just excited that I got two smells in one day. I think I'm going to learn to like windy days!

Okay, it's off to start marinating some chicken and shrimp. I hope to have lots to report tomorrow after the big Dr. M appointment. Keep your fingers crossed that some decisions get made that will advance this stupid healing process!

Monday, March 17, 2014

March 17

Happy St. Patrick's Day! 

So when things go downhill, they seem to go downhill pretty darned fast. I went to my HBO appointment on Thursday, came home and cooked up some lunch for my buddy Toby and we had a nice visit. He took off around 2:00 and I sacked out on the couch. The next thing I know, I woke up and it was 11:15 pm. WTH? And I felt like absolute crap. I dragged myself upstairs and crawled into bed, still fully clothed in jeans and a sweater. I got up with my alarm clock at 6:00 am on Friday morning and started taking care of the animals but didn't make it very far before I decided that there was definitely something not right with me. I went back to bed and pretty much stayed there until noon on Saturday. So I missed my HBO appointment, and my Dr. M appointment, and my Lizzett appointment.........I had a lot shaking on Friday and was NOT happy that it all got canceled. I don't even know what was wrong. I had crippling nausea. Like hunched over couldn't straighten up nausea and I felt like someone had taken a baseball bat to me. It was really weird. I was really worried it was the anti depressants since I took my first one Wednesday evening. But it's now Monday, I've continued taking them, and I'm once again fine, so I don't think that's what it was. Baby doll ended up getting sick Saturday afternoon, just as I started to feel better. I ended up not making him dinner because his stomach was bothering him too so maybe it was just a bug flying around?

I made sure I took it easy Saturday and Sunday, just in case. I had myself a movie weekend. I saw Out of the Furnace, Catching Fire, Thor: The Dark World, and Jack Reacher. 

I seem to be back up to snuff again today so fingers crossed that all is well. My Dr. M and Lizzett appts have been rescheduled for this Thursday and my HBO treatments resumed again today. Not sure if I'll be seeing those to the end or not. I'll have to see what Dr. M says about the screws sticking out of my neck on Thursday.

Today I stopped at the lab to give some blood and tonight I go see Dr. K, my PCP, to check my thyroid levels. See if we have found the right dosage yet or not. She also sent me an email as soon as Dr. Claire posted a note in my file about my depression, wanting to know if there was anything she could do. So, I'll probably talk to her about this Effexor stuff that Dr. Rob has me on. See what she thinks of it.

I have a couple of shout outs to give today. A big thank you to my friend Ginger for the note she sent. I hate that my friends struggle too but I feel better knowing that I'm not alone, and feel free to send any extra weight my way. I'll take it in a heartbeat, Smurfette! ;-)

I also want to thank JBB for releasing a paper lantern of my worries for me when she was over in Thailand. Every molecule of badness that I can slough off is worth its weight in diamonds! I hope some big pond carp gets fat on that ball of badness you got rid of!

In other news.........still waiting for my wine glass rack to be hung. Baby doll swears he'll get to it soon. We'll see how that goes. If I get impatient enough I can just hang it myself, the wrong way, and just hope it doesn't fall down any time soon, right?

Three of my bulb onions are now sprouted. Still no sign of the eggplant though. I'll have to go look at the seed packet again and make sure it said 7-14 days. Maybe it was one of the 14-21 day ones and I'm rushing the poor things. 

I finally finished my taxes today. They're doing something really interesting this year. You can actually get your federal refund back as a gift card to Amazon with 10% added on. How cool is that?? So, I was getting $229 back, I put $200 on a gift card so they'll actually send me a gift card for $220 and direct deposit the $29 into my checking account. It's a free $20! I'm so excited!

This Thursday is the first day of spring! Woo hoo! Jamie is coming over for dinner on Wednesday to celebrate Spring Eve on the grill. I had wanted to do it on Thursday, the day itself, but for the first time in a while, baby doll has a long weekend with his daughter. After Wednesday night I won't see him again until Sunday night. Sheesh! There's a Home and Garden Show this weekend that I want to go to. They have a demo of raised garden beds that I want to go check out. I asked Sushi Guy if he'd be interested in going. No word yet. If he's not interested, maybe Jamie will kindly be my date. There's wine tastings and food demonstrations (BBQ!), how can I not sucker someone into going with me?!?

Wednesday, March 12, 2014

March 12

Wow. We're getting some pretty effed up weather. Yesterday it's 50, half the snow is gone. I'm taking my garbage out to the curb without a coat on. Spring was definitely in the air. Today there's a winter storm warning in effect. No unnecessary driving allowed after 1:00 pm this afternoon. We're supposed to get between 12-15 inches of snow. The roads are an absolute mess. WTF?!

I didn't realize how bad things were until I was halfway to my HBO appointment this morning and had to pull over. I was sliding all over the road and having a heart attack about it. I grabbed my phone and saw that I had gotten a text from Janice at the HBO place letting me know that if I wanted to come in earlier, I could because they wanted to close the place down at noon and get everyone home safely. I sent her a text back and told her that the roads were already awful and that I wasn't going to make it in for my treatment. I told her to get her butt out of there ASAP.

Meanwhile, I was right down the road from the hospital so I figured I would at least go pick up my meds. I really wanted to get the anti depressants started to see if they help with my frame of mind at all. I've definitely been feeling better but there's still an undercurrent of hopelessness going on. Not only can I not figure out what the point of living is right now with the hot mess that my body is in, I'm kind of wondering what I was living for before the whole cancer mess. I think a lot of people live for their kids and grandkids, to see them grow up, get married, find success and happiness in life, but I don't have that and am not going to have that. I remember I was happy though. I would come home from work, uncork a bottle of wine, kick back and screw around on my computer and get happily tipsy. Or in nice weather I'd be out on the patio reading a book and drinking my wine. That was my life and I thought it was awesome. Work all day so that I could afford to buy wine, books, and internet. Unfortunately, now, I'm just not seeing what the big deal was. Was I waiting for my next laugh? My next trip to someplace to ride a roller coaster and get a thrill? Waiting to make a new friend? Discover a new hobby? What? What was the purpose of getting out of bed every day? What's YOUR reason for getting out of bed every day and living life? Do you have one? Do you have many? Is it the simple joy of feeling the sun on your face? Is it that you want to see how that weird stock that you bought does in the market for the next year? What makes YOU tick?

Okay, enough introspection. While I was at the hospital I checked to see if the red tape lady had time to see me before our 1:00 or if she wanted to reschedule. Turns out she had time. Can I tell you that meeting with her was one of my best experience so far at Strong Hospital?? She was friendly, competent, and man, she got things done. She asked me a slew of questions, filled out about 12 forms for me and had me sign them, and then clearly told me what next steps were. So, it sounds like she's going to try to get me Medicaid. I didn't think I qualified but she's going to try for it. And she's going through the city/county first for help. Then if things don't pan out there, she's going to check out the Obama Care thing. She told me to let her know as soon as I hear something from Hartford about the LTD. She said she's going to have one of her girls call them on Friday too to see if they received the packet I mailed yesterday. She got me so fired up with her no nonsense, kick butt attitude that I came home and spent three hours on the internet completing the SS Disability paperwork. Phew. Glad to have that done and out of the way. So now I wait and see what goes on. Stay tuned.

With the SS LTD stuff out of the way I felt I was allowed to focus my attention on the kitchen cart that arrived while I was out and about this morning. Let me tell you. This was by far, the nicest piece of 'put it together yourself' furniture, I have ever purchased in my life. It was packaged well so there was no damage when it arrived. It's made up of high quality material. For the first time ever I did NOT accidentally put a piece together backwards and then have to undo half the assembly to fix it. The instructions were VERY clear and easy to follow. And it looks fabulous in my kitchen. Even baby doll has commented on it like 3 times already tonight. It looks THAT sharp. Check it out:

So the brand name is Dolly Madison and it says that it was made in Thailand. Which happens to be where my friend JBB is vacationing right now. They definitely do quality work there, that for sure. And just so you get a feel for how I've recently rearranged things in my kitchen:

It's only ever baby doll and I at the kitchen and I'm not even eating, I'm just sitting there keeping him company. So I thought it would take up a lot less room to put the leaves down on the table and make it into a little bistro type table. Meanwhile, the leaves hanging down kind of get in the way so baby doll and I are going to be scoping out yard sales this summer to see if we can find a table that was meant for this space in my kitchen. I actually found an absolute perfect one on Amazon for $109. It got great reviews and the dimensions are perfect. The only problem is that shipping is NOT included and they want another $80 for shipping. Screw that. I'd rather shop around locally and see what I can find and avoid those disgusting freight charges.

I'm also going to keep my eyes peeled for a stool. That way when I DO have a guest over to eat dinner with baby doll, like Jamie coming over next week. The two of them can eat at the table and I can simply hop onto my stool and keep them company by being in the same room but not take up valuable real estate at the table when I can't eat anyway.

Along with my kitchen cart, I also ordered a wine glass rack that hangs from the ceiling. I handed that project off to baby doll. We're going to put it directly above the new kitchen cart. He needs to grab his stud finder from home tomorrow night though so that he can put it up safely and securely. I'll be sure to snap a new pic once that's up. I think my kitchen is definitely good to go for a few more years now. Heck, I'm not even sure what to put in my new cabinet. I told baby doll I'm going to have to drag a bunch of my kitchen toys back up from the basement just to fill the new cart!

Checked my seeds again this morning. It looks like one of the bulb onion seeds has sprouted. Although I planted two and a half rows of those. You'd think more than just one would germinate. It's a little suspicious so I'm not getting too excited yet. I'll be happier when more follow suit. Meanwhile, I took a few pictures of my greenhouse/family room so that you can eyeball that as well. Here's the rack that I started with my seedlings. My Yucca and my Spider plants are currently over powering it a little.

Unclear where Petey is going to be happy living. I stuck him on top of the pantry in that room for now. He's right next to a window (behind the coat rack) which is more than he was at QED so I'm hoping he'll fare okay but I need to keep my eye on him.

 I e-mailed Dr. M my disappointment in regards to the second screw hanging out. I told him that I'm in desperate need of a plan. I'm tired and depressed and something needs to start changing for the better. He responded really quickly. Here's what he wrote:

Wow, that all pretty much sucks. I'm truly sorry for everything you've had to go through. We will discuss in detail friday, but there are always solutions to these tough problems. If the hole is enlarging and there is more hardware exposed, it may be time to consider another graft/flap over the area. I need to assess it a bit more closely when I see it though. I promised you at the outset that we would do everything we could to get you through this and I am holding myself to that. We'll work together to find an answer and get you back on track. Hang in there and I'll see you friday.

Gotta love my glass half full surgeon. Hopefully he starts shaking things up starting on Friday!

The garlic chicken and orzo was a hit last night. The turkey breast and Italian potatoes went over really well tonight. Knock on wood, I seem to be on a roll with the new recipes/foods I've been trying out. No baby doll to cook for tomorrow night. :-( And then Friday night is leftovers night. He needs to clean up whatever is hanging out in the fridge and eat it up. That takes us to Shrimpy Saturday. Poor baby doll must get sick of all the chicken (and/or turkey) that I make him so I decided that Saturdays would be the night I cook a shrimp dish to break up the monotony. Although he had grilled hots this week with the meat sauces so I'm not sure how bored he could have gotten with something as exciting as that thrown into the works! Anywho, if anyone has a good recipe involving shrimp, feel free to send it this way for me to try out on him.............

Tuesday, March 11, 2014

March 11

I did a bad thing today. I looked at my neck. I've been avoiding it in the hopes that some kind of miracle is taking place due to the HBO treatments and that Dr. M would exclaim when he saw me on Friday. But then Sammy sent a text yesterday and she's wondering what's going on with my neck too so I decided to peek. Not good. There are now TWO screws showing. How many freakin' screws did he use to weld my jaw bone back in place?? Needless to say, the hole is even bigger since previously I could only see one screw. I have no clue what he's going to want to do about this damn thing. If I really do have to live with it being like this the rest of my life then I can kiss eating/drinking goodbye forever as well. <sigh> Twas a big bummer for the day.

Since I was already depressed I decided to try to use my speech prosthesis as well. It's not working either. Not sure if it's gummed shut or what the problem is but I can't make any sound whatsoever. I was reading the WebWhisper digest earlier today. There are a bunch of conversations going on about the different forms of 'speech' available to larys. Some arguments are breaking out as well, about which is the best way to speak. One guy finally wrote today that none of the ways to speak are available to him and becoming a lary has muted him for life. It's been four years now, and not a peep. He uses a boogie board, mime, texting, and word documents just like I currently do. He was really funny about it in his e-mail, while kind of shaming them. Talking about how he tried interpretative dance as well as communicating with drums but neither of those 'took'. He made me laugh. Reminded me of my friend H. I'm really glad I got hooked back up with that distribution list.

Watched quite a bit of Mary Poppins last night before crashing. Not sure I really want to finish it. It's simply not as good as I remember it being. I still have one more movie on my flash drive to watch. Something called Out of the Furnace. Neither baby doll nor I have even heard of it so it's going to be pretty exciting to see what the heck it's about. That might be on the agenda for tonight. Baby doll is still trying to kick his cold so we've been having quiet time on the couch at night.

I found someone to lavish attention  on this week! The sad thing is that I had to beg him to let me cook for him. What is wrong with people?? I asked him if my cooking really sucks and everyone is just afraid to say so. He claims that is not the problem. He just wants to see me and doesn't want me to feel like I "have" to cook for him. Nobody seems to 'get' me. Nobody is smart enough to comprehend how much happiness cooking really brings me. Except baby doll. He knows how much I love it. He loves seeing my eyes light up as I watch him eat whatever I put in front of him and I ask him questions about the taste, texture, and whatnot. One of the many reasons he has my undying devotion. Anyway, Toby is coming over for lunch on Thursday so I can cook up some chicken parm. I've been itching to make it again but there's some serious calories involved so baby doll would kill me. Luckily, I have some scrawny friends I can fatten up!

This morning I was out of the house bright and early to drop Ethan at the pound to get neutered. I was freaking all day because MY vet usually says no food or drink after midnight the night before a surgery. The city didn't make any stipulations like that. I decided to lock Ethan up in the cat carrier before I fed everyone this morning anyway, just to be somewhat safe. He's back home now and seems fine so we're good.

I was able to get in and do my HBO treatment early and then stopped at QED to pick up all my plants. It WAS Petey that Karen in HR said I could have. He is now happily ensconced in the workout room along with (4) Spider plants, a Yucca plant, and a tray of germinating seedlings. It's starting to look like a greenhouse out there!

I also went looking for my Notary Public stamp while I was at QED. It wasn't in my desk. I don't remember bringing it home. I sure as hell hope nobody decided to grab that and start forging my name to anything. I'm putting it in writing, right here and now, that I haven't notarized anything since August 22nd, 2013. Luckily, I'm pretty sure it expires this coming August so whoever took it doesn't have too much time to do evil with it. Why does life have to be such a pain in the ass??

I managed to find a little energy today and did some cleaning. I am now ready to receive, assemble, and start using my kitchen cart. I can't believe how excited I am about this stupid thing. Although I'm glad to be excited about anything right now after that period of depression. I'll take whatever I can get in the land of excitement!

I also started looking at my calendar for a good poker night. It looks like either 4/11 or 4/25 work on my calendar. I know. Seems really far out there, doesn't it? Turns out once spring hits, that's when all the plans start hitting too. There's a Home and Garden Show coming up, and baby doll and I are going to Toronto the first weekend in April to see a Yankee's game, and I got tickets to go see Phantom of the Opera, and........stuff. Stuff just happens and now I'm trying to squeeze a poker game in!

Okay, tonight is garlic chicken and orzo for my manly man. I don't think I've ever cooked orzo before. It's pasta but it kind of looks like rice? Interesting stuff whatever it is. We'll see if the light of my life gives it a thumb's up or not. Tomorrow night is an applewood smoked turkey breast tenderloin that I found in the sale bin at Wegman's for half price because it expires this week. Very low cal. Maybe some baby rosemary potatoes to go with it on the side.....ahhhh...have I mentioned how much I love cooking?? Finding recipes, shopping for deals, experimenting in the kitchen, and then presenting a finished product to a famished boyfriend and watching him lick his plate clean. It's simply the best. :-)

Monday, March 10, 2014

March 10

Thank God we changed the clocks! Another baby step in the right direction. Especially since I'm still not on anti depressants. I finally heard back from Dr. Rob today. He submitted the script incorrectly so I will now be picking up the correct medicine on Wednesday. By the time I get the damn things I'm not going to feel like I need them! I also noticed that he didn't bother to offer to reimburse me the copay for the incorrect pills. Wonder if I should hit him up when I see him a few weeks from now. As far as I'm concerned, he owes me. :-)

Okay, maybe I'm not so stupid for checking on my seedlings every day after all. Check it out!

My green onions have started to come up after only 5 days! Woo hoo! I'm on my way to having a garden this summer! I had to laugh as I got sealed into my glass coffin this morning. I was in the one on the left instead of the one on the right so I was right next to the dreary, gray windows. I was thinking that I am much like my little seeds that are germinating. If you're going to put me under glass, at least shine a little sun on me and keep me warm and moist so that I can grow flesh!

I can't wait for my appointment with Dr. M this Friday. I really want to know what's going on with my neck. Is it healing? Are the HBO treatments working? If not, should we do another skin graft? Dr. Rob was asking me how I would feel if there was nothing more to be done and I will simply have a hole in my neck for the rest of my life. I was NOT happy contemplating that. I sent off a note to Michelle today letting her know that as soon as there is progress in healing this damn hole then I'd like to meet with her again. I'm hoping Dr. M will check on the TEP this Friday too. I still haven't been using it. First it was being held in by a couple of stitches. Then it seemed like it wasn't sealing all the way around it. I want him to take a look at it and let me know where it stands. Meanwhile time is short. My insurance ends on 3/31. I'm likely going to pay for COBRA for a month or two to bridge me until I can get some help from The Marketplace (I think). Hopefully I'll know more about that whole mess after my meeting on Wednesday.

Speaking of the reams of red tape and paperwork that I'm currently wading through, the only real update I have is that I got the application for the Hartford Long Term Disability completed and mailed today. Phew. I was up past midnight working on it last night. Tonight I'll be spending a little time on the SS Disability paperwork before baby doll and I snuggle in and watch Mary Poppins. We just watched Saving Mr. Banks which was a very sad but very good movie. I had no idea there was a such a back story to Mary Poppins. So now I'm really interested in seeing the movie again (I'm pretty sure I own it) and baby doll has never seen it at all!

I canceled my subscription to the paper. I only want the Sunday paper but they make you subscribe to get weekends and holidays too. I decided I would just head over to the 7-11 on Sunday if I really felt the need for the paper. Which is what I did this past Sunday. And for the first time ever, I looked at the grocery store ads. I hate Tops but man, it sounded like they had some pretty sweet deals going on. So I spent some time last night, did some research, and started a spreadsheet of prices for the grocery items I most commonly purchase. I then stopped at Tops today. It turns out you DO need to be careful of their ads. They were offering Arm and Hammer laundry detergent, buy one get one free. Sounds like a good deal, right? Well, Wegman's sells the 50 oz container for $2.99, Tops sells it for $6.99. What the hell?? That's certainly not a deal! And then there was this big thing where if you bought a family pack of chicken breasts, there were (7) food items you could have for free. That deal was iffy. It turns out that Tops charges $3.99/lb for their breasts whereas Wegman's charges $1.99/lb. And you had to buy a 5# package to get the free items. The free items were valued at over $20 but then the question became, would you ever really use them? Some of them were a yes. Baby doll will drink the bottled water, and I'll use the BBQ sauce, but will we really eat 1/2# potato salad and an angel food cake? I don't know. I ended up getting the deal anyway because I really want to try Tops' chicken breasts. I'm told that as cheap as the ones are at Wegman's, they're also tasteless. So baby doll has a taste test coming at him some time this week to see if he can taste a difference in these breasts.

Speaking of taste tests, I gave him one tonight too. He mentioned a few months ago that he'd like me to make him some meat sauce and when I found a good recipe, he'd like me to teach him how to make it. So I had printed off 6-8 recipes a while back but never did anything with them. Now I have a free can of baked beans and a free 1/2# of potato salad to use up. What goes better with those than some hot dogs with meat sauce?? I made two different recipes. One was called Coney Island meat sauce and the other was called Garbage Plate meat sauce. They had some pretty radically different ingredients in them. He loved them both. So, they both go in the book, I'm ditching the other recipes I printed because two meat sauce recipes is enough for any cookbook. Now we just need to get invited to a cook out so that I can teach him how to make this stuff and he can bring it as a dish to pass.

I'm so glad my joy of cooking is back. That week or so of resenting cooking totally sucked. I am once again happy to be puttering around my kitchen. So much so that I recently rearranged everything in there and on Wednesday I have a rolling island kitchen cart being delivered. I never have enough prep space when I get on a roll with the cooking so I decided to remedy that. I had really wanted to go to a home show two weekends ago and have a contractor come look at taking out the wall between the kitchen and living room and building me a breakfast bar or work island instead. Now that I'm broke and jobless, I decided to scrap that idea for now and I splurged $160 on a piece of furniture that will hopefully take care of the need in the meantime. I've also been carefully evaluating all of my fun kitchen tools. A blender looks really cool on a counter whereas a wok takes up way too much room but in reality, I never use the blender whereas I use the wok every week. So I'm setting up my kitchen to accommodate the toys that I actually use and the rest are being stored downstairs in cabinets until needed.
BTW: I wanted to give a shout out to Aunt Helen. Your card made me feel so much better. Thank you for sharing that stuff with me.

So baby doll recently told me that he would never let me live on the street. He said if push came to shove, the two of us could move into his brother's basement which is where he was living before I came along. He has even said that if we break up and he suddenly finds out that I'm homeless that he will take me in and take care of me before letting anything happen to me. Seriously. Where did this man come from and what did I do to deserve him? 

I think that's about all the excitement over here. I hit the movie theater with J-man yesterday. We went to Webster with the reclining seats to see 300: Rise of an Empire. It was pretty good. Not as awesome as the first one of course. And those damn seats, there's like a 10 minute blank in the movie for me when a nap attacked me without warning. We hung out at my house afterwards and I fed him some paella that I had made the night before. It made me realize that I simply don't socialize as much as I used to and I need to fix that because I really enjoy it. So next week I'm luring Jamie over for dinner to help us celebrate the first day of spring. We're going to do up something yummy on the grill. And I think the week after that I might try another poker game. The fridge in the garage is starting to make some really wretched noises. I think it will be going to the curb once the snow melts. This means I need to empty it some though since it's chock full of beer. Hence, a poker game. I still need to find someone to lavish some attention on this week though. I need to adopt some more single peeps who like to be fed. I wonder if I could put an ad on Craig's List for that? HA!

Friday, March 7, 2014

March 7

So I stayed for the meeting last night. The meeting itself wasn't all that useful. Michelle, the speech therapist at Strong, was the speaker. She spoke about swallowing. The talk was aimed more towards people who's saliva glands have dried up and they now have a hard time making spit in order to masticate their food. There were suggestions of eating thin slices of either apples or cucumbers before a meal to help get saliva flowing. Or chewing sugar less gum. Also, smelling your food before you start eating helps your mouth to start salivating. Yeah, none of that applies to my situation. Michelle is a lot of fun though. Ton of personality and just a genuinely interesting person so I enjoyed listening to her even if I had zero take aways from the presentation. At one point the lady in front of me asked if there was anyone in the room who couldn't eat at all. A lady at the front of the room said that she really wasn't eating much because it was still too painful on the tongue graft that she had done. That wasn't good enough for the lady in front of me. She wanted someone who really and truly can not eat any food. I tentatively raised my hand behind her at which point Michelle smiled at me. She asked if it was okay if she singled me out. I shrugged. So she told the lady that the woman sitting directly behind her couldn't eat or speak for that matter. That's all the lady in front of me needed. Her name is Jean. We are now pen pal buddies. Pnina, the lady who is currently in too much pain with her new tongue to eat came to talk to us afterwards as well so she's on our e-mail chain too but it's mostly Jean and I who are gabbing at each other. I made some friends! Woo hoo! So there's no meeting next month. Instead, they have an 'event'. I guess this year it's some kind of tasting event. Obviously not something I will get much out of but I hear it's a big draw so if it doesn't cost too much (I think it might actually be free) I'm thinking of going simply to see if I can find some more friends. They also requested raffle prizes. They said they'd take anything to raffle off so I gave them the $15 Dunkin Donuts gift card that I won at Kunkel's Wheel of Fortune party. I can't eat or drink so I've just been kind of lugging it around. Baby doll's father gave me a dinner gift card for Christmas too. I immediately gave it to baby doll since it did me no good but if he hasn't used it, maybe I'll snag it back and donate that as well. Of course it would be just my luck to win these things back in the raffle that night at which point I'll have to go around and haggle with someone who won something that isn't edible. Ha! Anyway, I'd say the meeting was a success. Two new friends, broke the ice with the group, got the inside scoop on the next gathering. It's all good.

I got a little further in my Fran book. Stumbled on another shared worry. She's worried that her relationship with her boyfriend is too new to survive this cancer ordeal. She feels like he's "imprisoned" in a relationship with her. I know exactly how she feels. My man is so hot and so sweet. He could be out there dating some sexy babe who can talk and kiss and dance. Instead he's stuck with me. The curmudgeon that's all gloom and doom, can't talk, can't kiss, has no energy, has a life full of nothing but doctor's appointments. I feel so bad for him. Not that I'm planning on letting him escape, mind you. He's the glue holding me together right now! I just feel really bad for him. According to him I'm his best friend, we formed a really deep bond very fast upon meeting, and that he loves me. Period. So that's that. I promised him that I would do everything in power to be worthy of that love. I will cook for him, wash his clothes, keep a clean home, engage him in puzzles, games, cards, accompany him to Yankee's games and try to root in the right places, and whatever else I can do to let him know how sweet and special he is and how much I love him in return.

For the past two mornings, the first thing that I did when I woke up was check on the seeds I planted. Which is stupid because they take 7-14 days to germinate but I'm a little excited to see if I can actually bring a little dried ball of dust to life. Plus I have to check the moisture level, right? 

Speaking of green stuff, I splurged today. I had to go to Walmart to pick up kitty litter and there was a yucca plant sitting there for $11.98 with my name written all over it. Although that may have been poor planning on my part. I stopped at QED today to pick up the stuff that HR boxed up for me. Upon arriving back home I realized that I didn't get any of the spider plants that I was growing all along the windowsill in my area. Even if they're dead by now, I'd still like the containers they were in because some of them were kind of pricey. I sent an e-mail off to HR about the plants AND my watering can that should also be hanging around somewhere. I will now be going back on Tuesday to get those. She's also going to do a quick walkthrough with me because I think some of my stuff was left in the bathroom as well. She asked me if I wanted the monster plant too. I have no idea what plant she's talking about but I hope it's Petey who resides on the filing cabinet in my area. I've been growing him for over 10 years now. He was a gift from one of our past president/owner's friends when we went from an LLC to an Inc. The man who gifted it died a few years later from pancreatic cancer I think. And of course Don is long gone as our owner and president. I would love to be given custody of the plant that I call Petey. Now I just need to figure out where he would live the most happily in my home!

And even more green stuff.....I saw grass today. Yep, I swear to God. Actual grass. Around both the trees in my front yard. I did a double take but sure enough, it was a reality. Clocks get changed tomorrow, 3/20 I'll be doing up chicken, shrimp, and veggies on the grill to celebrate the first day of spring. It's finally getting here.

That was one of the things I talked to Dr. Rob about. I told him that I think the winter season depresses me. I've noticed that it's been gradually getting worse over the past 3-4-5 years. He said I might suffer from SAD (Seasonal Affective Disorder) he said that depressed people also tend to anchor their depression on a situation. Oh, if only I lived in a warmer state, or if I had a different job, or if I wasn't married, or.....he said it's a common thing to do. Again, hopefully the anti depressants will help with that. Unfortunately I ran into a snafu with them today. I picked up the script but didn't get around to looking at it until late afternoon at which point I discovered that they gave me capsules instead of the crushable tablets that Dr. Rob and I had discussed. There were instructions all over the place stating do not chew, crush, or break the capsules. So I had to send a note off to Dr. Rob to find out what he wants to do and I'm still not on the meds. I was looking forward to getting on them because I've heard from a number of people (cancer survivors) that they really helped. There was talk about energy levels coming back, and general happiness with life just once again being achievable. A random woman from the WebWhisper forum reached out to me and told me that she didn't even realize that she was depressed but her doctor decided to put her on something and she definitely noticed the difference within a couple of weeks. So she highly recommends that I get a little help from that type of med. I guess she's back off of it now. She said she didn't need to take it for long and it was very simple to wean back off of it.

So updates on all the lovely paperwork that's happening: Baby doll called that LLC place about getting help with the SS disability paperwork. He didn't really like the sound of them either. They also mentioned a large sum of money. He thinks we should try going it on our own. And yes, he used the word 'we'. Isn't he the best?? He also talked to Hartford about the LTD that they may or may not provide. Supposedly they tried to contact him twice earlier this week with no luck. He called them and it turns out they had a wrong digit in his phone number. He asked them about getting help with the paperwork for SS Disability. They said that if I get approved for LTD through them then they will be happy to appoint me an advocate who can hold my hand through all the paperwork needed for SS Disability. Sounds good to me! I'm still going to start looking over the application this weekend because it takes 3-5 months to process. I will also be finishing the LTD questionnaire from Hartford and getting that mailed out to them tomorrow to get the ball rolling on that. HR said that I couldn't sign up for COBRA until my insurance actually runs out which isn't until 3/31. This is upsetting Janice at the HBO place because she needs to call and get approval of the treatments ahead of time and won't be able to do that if I have to wait until the last minute. I have an appointment with someone next Wednesday to talk about what I can qualify for through The Marketplace (Obama Care). Lastly, HR was once again encouraging me to apply for unemployment for some reason. According to the packet she gave me today, one of the top ten ways that people commit unemployment insurance fraud is by applying when they know they won't be able to work due to illness. I'm pretty sure that applies in my case. One of the other top tens was applying and then not looking for work. I don't plan on looking for work until something on my body starts healing. I keep falling further and further apart in the health department. I want to start seeing some improvements ie; the gaping hole in my neck to close, speech/swallow therapy to commence, energy levels to come back to something closer to norm, weight stabilization, no lymphodema. Something.........anything.........I just want an improvement or two!! Anyway, that's an update on all the red tape I'm currently wading through to see how I'm going to be able to afford life.

Lulubelle received more food today. Andy and Kim each sent $1 to 'feed the pig'. Lulubelle got so excited she ran out and found a boyfriend. Seriously, I'm not prepared to deal with a teenage pig. First the tramp stamp, now a boyfriend with a Batman fetish. What's next?? A piercing?!


Thursday, March 6, 2014

March 6

It's 3:13 on Thursday afternoon. I'm still at the hospital. I just got done with all of my appointments. There's a meeting here tonight for head and neck cancer patients at 5:00. If I go home, I won't come back. I know myself. I'll either lay down on the couch for a quick nap from which I simply won't get up or I'll start a project and lose track of time. So, I'm staying put at the hospital. They have this nice rec room with computers, TVs, books, and whatnot that patients and family can simply hang out in. So, I'm going to hang out and blog until the battery in my iPad dies at which point I will switch over to my Kindle and do some reading. I'm finally reading the book that Kim and Andy bought me months and months ago. It's called Cancer Schmancer by Fran Drescher. I guess she had uterine cancer. It's a pretty good read so far. She's not going through quite as much as someone who has lost the ability to speak and eat but she has the same concerns and fears that I think all of us diagnosed with cancer have. One of the running themes presented by those of us on this side of the health fence is how much energy we expend on trying to make everyone around us feel better about our condition. You would think that getting cancer would automatically make you the number one concern but it turns out that everyone around you seems to feel the cancer is really happening to them, not you. One of those weird societal things , I guess.

I am happy to report that the family room is sparkly and ready for P90X workouts. I even shampooed the rug out there. It looks fantastic. Baby doll moved the TV up from the basement along with the DVD player, his weights, and whatever else he's going to need so he's all set. On Saturday we're going to take some before pictures and he's going to do his FIT test and record it. He will be then ready to start this thing on Monday, I'm guessing. Hopefully he'll be shaking his cold by then.

Turns out the chicken stew and potatoes was a lot lower cal than I thought. It's amazing that homemade mashed potatoes can still taste good even when you use less butter and 2% milk rather than cream cheese. Saves a ton of calories too. So as a treat, I cut the pan of brownies in quarters and let baby doll eat one super sized brownie to cheer him up. The other three went in the freezer for the next special occasion where he might need a pick me up. 

Burpee received a nasty gram from me last night. After dropping some bucks on those seed starter packs I was expecting great things. Supposedly, if you slowly poured warm water over the sod pellets, they would expand into individual cells of super soil. Well, 2 out of the 36 pellets did just that. The rest did not. I spent 45 mintues breaking up the rest of the pellets by hand and even then they didn't expand and absorbe the water very well so I had to supplement with potting soil that I found out in the garage. What should have been a fun and exciting project turned into a very frustrating and upsetting experience. I was not a happy girl. They heard about it. When all was said and done, some seeds got planted. They are now covered and according to my friend G, so long as I keep them wet and warm, they should germinate. We'll see. This week was eggplant, bulb onions, and green onions. I think I might start some cilantro and some basil in their own pots and start growing them too, not to ever be transferred to a garden outside though, to simply live in the pots and provide me with what I need to cook. Not sure if that will work or not. I have zero experience with gardening other than putting an avacado pit in a cup of water as a kid. Next, I need to start researching what materials I'm going to need to build some raised beds in the backyard. I don't want the dogs wandering in and peeing on the stuff I'm growing so I'm looking at some kind of raised garden beds.

I was mostly amused but also a little horrified earlier this week when I started channeling Sammy. I was at Fidelity to talk about my 401k. I was left in the waiting room for a bit and they had some free self service coffee. I wandered over and they had a k-cup of French Toast flavored coffee. Doesn't that sound awesome?? Mind you, I can't taste it but I took one, thinking I could brew it at home and at least smell it. Yeah, it wasn't until I was driving home that I realized that I can't smell any more either. But the Sammy part is the fact that I felt okay taking a k-cup and secreting it in my purse. That is SO something that she would do. She has some mini hoarding tendencies that I have always found kind of funny and now I'm suddenly eyeballing the candy dishes on people's desks and whatnot thinking I should grab a couple and stick them in my purse in case baby doll needs a mint while we're out at the movies or something! UGH! I'm turning into Sam!! LOL!

So today I had my appointment with the palliative doctor. His name is Rob. He's very nice. We talked about what's going on with me. He difinitely thinks my day of despair was triggered by running out of pain meds. He told me not to do that again. He said they can ALWAYS get me a voucher to get more meds free if my insurance balks and there's no reason for me to try to tough it out and go cold turkey like that. He said that was crazy. He's also going to put me on some anti depressants. He says the nice things about meds is that I'm not married to them. I can take them for a few weeks and if they don't seem to be helping, then I can simply stop taking them. 

So he's putting me on something similar to Cybalta which I've been seeing a ton of commercials for although I thought it was a pain med. He said it's a depression med too and the fact that it helps with pain is an added bonus for me. So I start on that tomorrow. I need to email him in a week or two to let him know what's going on and I see him again in a month so we can evaluate if it's helping or not. He also talked to me about seeing a counselor. Just some food for thought. So, that's where that stands.

Then I talked to Rita, the social worker. She said that I don't qualify for Medicaid because I make too much money on disability (or I will when I start getting it) and I don't qualify for Medicare because I need to be on disability for over 2 years. That leaves me with the Obama healthcare plan which is called The Marketplace. She's going to set me up with someone to talk to about that next week. I also applied for some charity care through the hospital. I need to give her proof of the 50% salary reduction before she can proceed with that but it looks like the hospital itself will then forgive me 60% of my medical bills. So the bill that I just got in the mail this week for $510 might be sitting in my 'to be paid' pile for a bit until I see if this charity stuff kicks in. She also already gave me a voucher for the anti depressants I'm picking up tomorrow and the morphine I'm picking up next Wednesday. She said that I shouldn't even have to worry about copays right now and they're happy to help me out with those. So, I'm getting free meds. Woo hoo! 

Yesterday, for the first time ever, I wrote an e-mail in to the WebWhisper group. It was a thank you e-mail to a lady named Gina who sent in a story about how she's coping with everything. She talked about being 86, living alone with her cats, not being able to speak but finally being able to eat after 2 years, and her story just made me feel better. It was more her timing than what she had to say. I just felt better knowing that someone was going through all the same crap as me. I then received an e-mail from a lary named Heidi who who used to be an attorney.  She was letting me know the different courses of action I could take now that I'm out of a job. Based on what she said, it sounds like I'm going down all the right paths. The only thing I'm currently questioning is the SS disability. I started looking at applying for it last night and there was something on the site talking about how it would be better to have help applying for it. So I sent some info to the pop up window that appeared and received some info from a local LLC. Now today I got 3 solicitation e-mails from them and they want $6k to help me, but only if I win. It's all sounding really shady to me. I think I'm going to try applying on my own to start. Then if I get declined I'll worry about hiring someone to help. Baby doll's brother is a lawyer, I have to think he can help if push comes to shove.

I think that's about all I have for today. The meeting will be starting a little less than an hour and my battery is down to 8% so it's time to do some reading. I'll spit some more crap out at you tomorrow. I think the blogging every day is definitely going to help me mentally.


Wednesday, March 5, 2014

March 5

Okay, instead of taking a break from my blog, I've decided that maybe I'll just start posting every day and vent all this poisonous crap that builds up inside of me. Maybe if I get it out of the mini tornado that my brain has become, and write some shit down, I can start organizing it into some semblance of sanity.

First of all, I finally got my mail today after almost a week of ignoring it. I only ever get bills which depresses the hell out of me so I've been simply overlooking the fact that I even own a mailbox. Turns out good things can come in the mail too! Both JBB and El sent me some 'food' for Lulubell. How freakin' adorable is that?! I actually laughed. I haven't laughed in forever. It felt good. Thank you guys. Very sweet. And Lulubell appreciates it too. I told her she wasn't allowed to spend it on any more tattoos though. I think the plaid heart on her butt is enough bling for a princess/ballerina pig.

I can tell that I must be snapping out of my funk because for the first time in over a week, I'm back to enjoying cooking. Not that I stopped cooking. Baby doll still needs to be fed no matter what my mood, but I definitely was resenting the fact that I had to expend energy on cooking. Very unlike me. I think it helps that he has posed a new challenge for me. He bought the P90X-3 system. He's VERY unhappy with his weight. It is my job to start cooking low cal meals for him. Needless to say, he's been eating a lot of chicken. I've been doing low cal, chicken meals since around 2/24, I think. The X-3 arrived last Friday. I read the nutritional guide over the weekend. I can't say I learned anything new. I've been chubby chick most of my life, I know the basics of low cal cooking. Last night we watched the pep talk video on what the X-3 is all about. Today, my plan is to get the family room cleaned up which is where he's going to set up all his weights and mats and things, and do his video workouts. Unfortunately, even if I get it all sparkly for him in there today, I'm not sure when he's going to actually start the workouts. My poor boo came home with a cold last night. I plan on making him chicken stew with mashed potatoes for dinner tonight. Somewhat low cal but also a comfort food. I might bake him a brownie too. I told him no more baked goods unless it's a special occasion but I figure I can cut them up and freeze the rest so that he doesn't over indulge as he is wont to do when I bake. I will simply leave one brownie out, unfrozen, to cheer up my sick man.

Since I'm going to be cleaning up the family room for his use, I decided that I can probably steal a corner of it for my use as well. I think a large part of the darkness going on in my brain has to do with the continuous bad weather. Yes, it's snowing again today. Will it ever end?? I have it highlighted on my calendar that we turn the clocks ahead this Sunday. Thank god. That will give us an hour more of daylight each day. And I put a big star on 3/20 on the calendar because that's the first day of Spring. Finally. So, back to the corner I'm stealing. I had talked last fall about starting a vegetable garden this year. Now that I'm out of a job, free vegetables sound even better! So, I went and spent a little money yesterday and I'm about to start some seedlings. I did a bunch of calculations and dedicated a little pocket calendar to my garden mission and it looks like this week is when I need to start the onions and the eggplant that I want to grow. Then I'm all set until the very end of March when I will need to start tomatoes and green peppers. I have it all mapped out when seedlings should be started so that everything should be ready to go into the ground Memorial Day weekend. I bought some seed starter bins and I have the perfect rack to put in front of the sliding glass door in the family room so that the seedlings will get as much sunlight as possible. Plus, with the gas heater running in that room 24/7, it should be warm enough out there as well.

Did I mention how handy my man has become now that he pays rent? Crap. Which reminds me I need to go deposit his first month's rent check in the bank. I should walk over and get that done today. Anyway, I told him that the change in his attitude about my house now that he pays to live here is almost comical. The little gas heater in the family room died a couple of weeks ago. Just stopped working. He got out the user manual for it. Spent a couple of hours cleaning it. And voila, the thing has been back to working like a champ for over a week now! I had also ordered myself some matching tables for the living room before I became jobless. Two end tables, a coffee table, and a console. Baby doll spent half a day putting them all together for me and getting the living room set up all nicey-nice. He's quite the happy little homemaker all of a sudden. And we were watching HGTV the other night (of course) and I asked him if he thought we should paint the living room a light blue color this spring because I feel like the entire room is nothing but shades of brown right now. He gave the paint color a thumb's down. Normally he'd say something to the effect of "whatever you think is best" but he actually expressed an opinion about something! I'm really liking this entire attitude change. I told him he should have started paying rent sooner. :-)

So being out of a job is totally flipping me out. I keep picturing myself being booted out of my house and living on the street. I told baby doll that I know it's a ridiculous thought. Stuff like this must happen all the time to people and you don't hear about people being tossed onto the street on a daily basis, but still, I'm totally spazzing. The thought of being poor has totally changed my personality in the blink of an eye. I was at Wegman's yesterday picking up a few dinner enhancements for my man which is when I saw the display for the vegetable seeds and decided to follow through with my garden plan. When I got to the register, I noticed that the girl was counting how many yellow packets I had and how many green packets I had so that she didn't have to ring up each individual packet. At first I couldn't figure out what she was doing but then I was like oh wait, I should tell her that every seed packet has a different price point. And then I was like, well wait, maybe I should just keep my mouth shut. VERY unlike me. I hate being dishonest like that. And then I thought well it will serve me right if the one packet of seeds that she decided to ring in is one that costs $2.50 - $2.75 and I end up overpaying for the other 14 packets. Turns out the one packet she rang in was the cheapest seed packet I picked out for $1.19. So yep, I stole. My integrity is in the shitter. And in for a penny, in for a pound. A friend of mine said that he has some new releases on flash drives that he can drop off to me on Friday. I actually said okay. I am NOT a fan of stealing movies. I'm always happy to pay to see them at a theater or pay to rent them once they're released. I feel the moviemakers deserve my $10 to entertain me for a couple of hours. But now I'm suddenly broke, jobless girl and it would seem all bets are off. It's not quite on the level of cooking and selling meth like in Breaking Bad but it would seem that I'm on my way to wearing the black hat instead of the white hat. <sigh)

So, I'm unemployed as of Saturday. Some people are very angry about this and I'm not sure why. I haven't worked since August. They can't simply continue to employ me and have me not do any work. It makes logical sense to me that it's time to let me go. The only part of the whole thing that rubs me the wrong way is that they totally ignored my query about working part time. I asked HR if my boss would be interested in employing me part time, she said that she would check with him, and the next thing I know I get a letter stating that I'm being terminated. If my boss doesn't feel that I have any value as a part time employee to the company, that's fine, but at least tell me that. I feel that should have been part of the termination letter. "We reviewed your request to become a part time employee but feel that it would not be an effective move for the company at this time.". Or something to that effect. Don't simply ignore the fact that I asked. I understand they're in business to make money and need to do what's best for them. It just seems like such a lack of integrity, which is kind of par for the course for them, to decide to simply ignore a question rather than give an answer that they think is going to make them 'look bad'. But whatever. I swing by tomorrow to drop off the dinosaur of a laptop that I was using over a year ago when I worked at home for a week. The IT guy is probably going to turn around and dump the poor thing straight into the recycling bin. And I get to pick up whatever HR decided to pack up from my desk and the bathroom. I hope HR is at least smart enough to get our Office Administrator involved in packing me up. I think Lisa has more of a clue of what stuff is mine than HR does.

So now the questions about income and not landing on the street begin. As well as how the hell do I pay for my medical care. I mentioned to Janice at my HBO appointment today that I had lost my job. She immediately started making phone calls for me. Talk about a woman who gets stuff done! She gave me a Charity Care application to fill out. I have no idea what it's for but I'll go ahead and complete it. She also set me up with an appointment to see the social worker after my palliative care appointment tomorrow to talk to me about disability and getting on Medicaid/Medicare. I'm glad I felt the need to mention the loss of my job to Janice, she seems to know who I should talk to and about what! I think that's another good reason for shooting the shit in my blog more often too. To document exactly what hoops I need to jump through to get money to work in my life. Maybe I can write a book about THAT afterwards. If I'm so lost and clueless, there must be a lot of other people who are as well.

So when I woke up feeling crummy this morning I found a somewhat happy thought to fasten on for the day. At least I'm not stuck in the hospital. If I'm going to be bummed out and miserable, better that I can mope on my couch in the comfort of my own home than be stuck in the freezing cold, unfriendly hospital with limitations on my every action!!

And now I'm off to plant some eggplant seeds. Wish me some green thumb's because I'm not sure I own them for growing something that will actually be edible!

Tuesday, March 4, 2014

March 4

Well, things aren't much better. I'm thinking about taking a break from my blog after this post so that I'm not continually bringing everyone down.

Last night I wet the bed. Yeah. I have no effin' idea why. I was dreaming that I lived next door to Danny Devito and Rhea Pearlman. We were having morning coffee. I suddenly realized I had to start getting ready for the day. I ran across the yard to my own house and decided that I had to use the bathroom really quick before I did anything else and lo and behold, I started to wet the bed. Woke me up but the damage was done. How mortifying to have to wake the love of your life up in the wee (ha ha) hours of the morning to change the sheets on your bed because you've had an accident. My life sucks. My boyfriend, on the other hand, is the best thing that's ever happened to me.

I also lost my job this week. I received the official letter from QED on Saturday that as of this Saturday, I am unemployed. That's going to be a fun mess to wade through. Baby doll has an appointment set up for me at 1:30 today to talk to Fidelity about my 401K and find out what needs to happen with it. It's also on my list this week to apply for disability through social security. Baby doll has started researching lawyers, just in case. I'm told you usually get turned down the first time you apply, then you get a lawyer, and you fight it. Baby doll said that in his reading, some of the ways to definitely get approved are to lose your voice, and/or have cancer reoccur after radiation treatment. I tick both those boxes so hopefully I won't need a lawyer. The website says it takes 3-5 months to process a disability claim so I need to get my butt moving on that this week.

I guess HR will be sending me some info on COBRA so that I can extend my insurance coverage. It sounds like I'm covered to the end of this month by the company and then I'm done. I have no idea how much COBRA is going to cost. Definitely not something that's in my budget. I wonder how you qualify for Medicaid/Medicare? I'm going to know more about this type of crap than I ever wanted to by the time I'm done, I'm sure. 

I talked to the docs about how freakin' depressed I am. Asked about anti-depressants. I have an appointment on Thursday at 1:00 with a palliative care team. I had to Google it. I guess it's like hospice but without the death sentence involved. A team of doctors who try to figure out how to give you the best quality of life they possible can. I'm still trying to figure out what threw this god awful switch inside of me. I just don't seem to give a crap any more. All I can think is that if I off myself now, life would be a lot simpler. Baby doll can find homes for the animals, sell off the house, he and Sam can make sure my ashes are buried somewhere out of the way and everyone can simply move on. Just 6 months ago I was thinking that so long as I can cook, play on my Wii, read a book, and snuggle with a cat, my life is a wonderful place to be. Those thoughts aren't doing it for me any more. Maybe I didn't realize how tedious the day to day living sitch would be. I avoid taking showers. I only take one every 3-4 days because it's such a pain in the freakin' ass. I used to love showering! It used to be so refreshing, getting all clean, and feeling good. Do you know how much concentration it takes to stay involved in a story line in a book? A LOT. More than I seem to own, actually. Do you know how many TV commercials revolve around people eating?? Like every other commercial involves food!! I don't even like chocolate but there's a commercial of this hot chick snapping her teeth into the little caramel filled Giardelli square that makes me SOOOO hungry. I want to eat SOOOOO bad.

I actually tried eating some chocolate frosting this past Sunday because of that commercial. I scraped some onto my teeth inside my mouth. Yeah, couldn't really taste it. Hell, I don't think my sweet taste buds had come back to life yet before I went through round two of radiation so that doesn't surprise me. I then tried washing it down with some water. Well, water came pouring out of the hole in my neck where the screw is sticking through and ran right into my stoma, choking me. What fun!

I really need this thing on my neck to heal. I was supposed to be meeting with Dr. M this Friday but it got bumped until next Friday. I want to know if these HBO treatments are doing anything or if we're going to have to do another skin graft. As far as I'm concerned, this hole in my neck is my number one priority right now. It needs to be gone.

Dr. S gave me a little life priority list when I saw him last Friday. He said there are three things I should be concentrating on right now. 1. My HBO treatments. 2. Pain management. 3. Nutrition.

I got in trouble with Joanna, my nutritionist, last week. Because of the vomiting and withdrawal symptoms, my weight dropped back down to 108. I had been doing so good at holding it at 116 too! She also prescribed some packets of stuff called Juven. I need to mix up and "eat" two of these a day. They supposedly also help with wounds that won't heal. She said the wound in my neck might be a little too severe for the Juven to really do any good but if my insurance covers it, we might as well try it. So, I've been on that stuff since last Friday. Every morning I get everything out of the medical cupboard that I need to "consume" for the day and I put it on the kitchen table. That way, at a glance, I can see what I still need to get into my body at any point during the day. I've also gone back to doing some gravity feeds. I spend so much time on the couch napping and syringing two cans of food sometimes makes me a bit nauseous, so I simply fill the gravity bag, plug in, and 'eat' while I nap. It's been working out pretty well and I've been great about eating (6) cans of food and (2) Juven packets every day since last Friday. This is on top of all of my meds, my thyroid pills (which I have to take on an empty stomach, separate from everything else), and my Miralax. There's a lot of crap being siphoned into this body to keep it running. Did I mention what a pain in the ass daily living is?

Okay, I have to go to my HBO. I just wanted to do a quick pop in to let you know my latest horror. Hopefully wetting the bed was a one time thing. If anyone has any happy thoughts that might cheer me up, can you send them my way? Nothing I can think of is helping, AT ALL. I'm now hoping that I can hold out for the warmer weather. If I can just keep myself alive until the tulips start coming up, maybe things will be okay. I have no idea why I would think this to be true but I'm going to hang onto it until it's proved to be untrue.