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!