Friday, September 28, 2012

September 28 -  Mentally, I'm over the moon. It feels so good to know that no more damage is willfully going to be done to my body!

Physically, holy crap, I'm a mess. I can't believe how much I hurt!

Now, when it's most important to be drinking my (3) Ensure's a day to give me the energy I need to heal the garbage dump that has become my body, I can't swallow anything! Two sips and I have tears running down my face and I'm promising the world anything to just make the pain stop. Which it does if I stop drinking, so that's what I do. Not good.

So there's this whole timing, coordination thing that I've had going on. I paint the Lidocaine on my tongue to temporarily numb everything up. Then quickly do the miracle mouthwash and the liquid Roxicet. I then wait for 30 minutes for that stuff to kick in. Paint more Lidocaine on and then chug as much Ensure as possible. The one sticking point is that the place that hurts the most is the top, way, way back of my throat. The only way to get it numb in that particular spot is to probably stand on my head while swallowing a mouthful of Lidocaine. I have not resorted to that yet. I just choke down what I can with 75% of the pain numbed out and let the tears flow. <sigh>

Working from home this week has been a huge help. I can take 3 breaks a day to go through what I described above. And it's nice to be able to down the pain meds every four hours without having to worry about driving or anything. Plus, when I'm at home, there's no one to make me talk, which is an exercise in massive pain, all in itself. Lis IMed me yesterday about boxes piling up at my desk. The only packages I ever get at work are RMA's which are not usually urgent so I wouldn't normally worry about them but she was in a panic and putting my boss in a panic, and whatever. I decided to buzz in for a couple of hours yesterday to put in some face time. I ended up talking to at least 6 different coworkers about how I was feeling. Nice to be loved, but I'd rather be home not speaking. :-) On the bright side, I got to sit with the boss for a few minutes and he okayed me working from home again next week which came as a huge relief. And hopefully by the end of next week, pain will be washing out and away instead of washing in.

I'm still doing the tank top every day but the Lubriderm didn't last long. Turns out it's not as neutral as I supposed and now that skin is actually peeling from my face and neck, that stuff burns! So, a quick trip to CVS and I have a large tube of the Aquaphor medical ointment that was originally prescribed. My neck is looking a TON better after only 3 days!

So, Tuesday I brought my tech team both an ultimate chocolate cake, and an ultimate white cake. They were in pig heaven. There were hugs all around after the last treatment and I took my lovely Silence of the Lambs mask with me. Tried handing it off to JT yesterday, told him he could use it as target practice when I cheesed him off at work. He said that even HE isn't that evil (yeah, right). But Maynard was standing there and said he wanted it so my mask is now hanging in a place of honor back on the shipping dock. It was making me laugh yesterday every time I walked past it!

And Tuesday at lunch R and Kunkel stopped by with a huge bouquet of absolutely gorgeous flowers and some fun balloons! Yay! Celebration of no more nuking! It was absolutely perfect. I was sitting there thinking okay, in the past I would be drinking, smoking, and eating in celebration of something like this. Since all 3 of those are off the table, I wasn't sure what was left. I did a little softshoe dance in my living room which felt pretty good but the flowers and balloons were the winner of the day. ;-)

Wednesday evening, I doped up on a bunch of pain meds and headed to my friend Kit's retirement party. Today marks her last day of being employed! She's such a lucky, lucky thing! I'm so envious! Anywho, it was a really nice venue at a golf ball and racquet club. The hand passed hors d'oeuvres were killing me. Stuffed mushrooms, crab cakes, coconut shrimp. I'm starving and not only does it hurt too much to eat, but even if it didn't hurt at all to eat, everything tastes like crud anyway due to dead taste buds. UGH! I don't know how much of this I can take!! Phew, okay, back on topic, it was a really sweet get together for Kit. Our county executive, Maggie Brooks, gave an awesome speech and the turnout was spectacular. There are very few people I look up to in life. I view most peeps in my world as equals, but I have to say, Kit is definitely someone I have admired from day one and she continues to impress me with each continuing day that I know her. Meanwhile, I saw a a bunch of the people I used to work with 14 years ago so catching up was a lot of fun. And I was told by all and sundry that I look wonderful! Amazing what dumping 35 pounds can do! Now, if only my inside would heal and match my outside, I'd be all set.

Yesterday was the dentist to get fitted with the fluoride trays. It was a 5 minute in/out thing. I told the dentist all the different things I'm doing in an effort to keep my mouth clean and healthy. Biotyne at night, water pik 3-4 times a day with the salt/baking soda mixture, the warm steam humidifier. She was impressed and said I'm doing an excellent job. So, I just have to wear these trays for 5 minutes twice a day to help with some fluoride treatments and I go back in two months so they can paint a treatment onto my teeth and see where I'm at from a 'tooth health' perspective.

I also got a call from the radiation doc's office yesterday. They had scheduled a follow up appt for me for 11/1. They were calling me to move it up to 10/11 because they were unhappy with how much weight I lost. Whatever. Dr. A can yap at me all she wants, I'm not letting her put a feeding tube in. I'm done letting anyone hurt me for at least the next year. No more procedures. No more cuts. No more poking and prodding. We are now moving forward. The most I will allow done is taking blood and doing the CAT scans. So, I'll go to the appointment, let her charge my insurance some outrageous fee, let her blah, blah, blah wash over me, and then I'm home again, home again. 

Which brings us up to today. It's 2:36 am and I'm wide awake, mouthing off in my blog. Sleep is kind of a hit or miss thing. Again, nice working from home just in case I have a night of insomnia and need a nap. Haven't had to take one yet this week but at least I know the option is available. This weekend Patilda is coming up to hang with me again. Play some games, shoot the breeze, and just be with me in general. I was whining to my man-servant last weekend that I've always loved being a solitary person and my alone time is super precious to me but I've noticed over the past few months that I've been getting a little lonely here and there! The horror! Say it isn't so! He said it makes sense because I've been under the weather. He doesn't think anyone out there wants to be alone when they are sick, especially if it's a prolonged occurrence like mine. I guess I'll buy that. I sure hope once my health is back my independence bounces back as well. Being lonely really kind of sucks! I don't recommend it! Thank goodness for visiting friends. :-)

Monday, September 24, 2012

Sept 24 - Okay, I'm still in major pain but my mental attitude is 100x better today than it was on Friday. Only one more zap and then I'm finally free to start recovering from this months long nightmare! Woo hoo! Screw winning the lottery, this is SO much better!

Working at home this week was a stellar idea (Thanks for suggesting it Lis!). I slept until 7:45, got up, took care of the furballs, took all my medicines including my heavy hitter pain meds, and was at my "desk" at 8:02. I also cranked my heat to 70 degrees and put on a tank top so that I can Lubriderm my neck and face every couple of hours and start getting rid of all the peeling and stiffness that's going on with the radiation burns.

Saw the doc for the last time today. She simply rehashed everything that's been said for the past 6 weeks, wished me luck, and told me to call if I need anything.

I'm thinking about buying the tech team an ultimate chocolate cake from Wegman's tomorrow to celebrate never having to see them again. Ha!

That's all for now. Posts will likely be fewer and farther in between from here on out. I'll only chat at you as I discover improvements or see doctors.

Friday, September 21, 2012

September 21 - It has been a really bad week. Get ready for one long whine.

My throat is absolutely killing me. I'm not doing so well with forcing myself to drink (3) Ensures each day. I think I've only managed 1.5 - 2 each day this week. It simply hurts too much! This means I'm not getting any energy for my body to burn while it's healing. This is probably part of the reason for the nausea, dizziness, and exhaustion that have landed hard on me this week.

Talking has been awful as well. My tongue has pretty much rolled over and died. The numbing gel isn't working as well as it was in the beginning either. The phlegm inside my mouth is at its all time worst too which also makes talking difficult. And yes, I have been wiping my mouth out like crazy with tissues and it's definitely as unattractive as I thought it would be. It also hurts to be swiping my tongue like that but the pain is the lesser of two evils when it comes to phlegm taking over.

I threw up today for the very first time since the treatments started. Granted, there wasn't much to come up other than some medicine and water but it was still really unpleasant. Then I was gagging all morning at work which was not thrilling me (and JT wasn't thrilled to be listening to it either!). It's because something is touching the back of my throat and causing the gag reflex. I had the doc look at it when I went to my appointment this morning. She said my tongue has now swollen up from the radiation. I'm picking up a prescription for some light steroids tomorrow to hopefully keep it from swelling any further. I don't know why but I was under the impression that the radiation would not cause any swelling. Thank goodness it waited until the last week but it would have been nice to have escaped it totally.

I also lost control of some bodily functions this morning. Luckily I was at home when it happened but it was still pretty horrifying. I will be working from home all of next week so that I don't run the risk of mortifying myself for life in public.

Another reason for working from home is the fact that our offices are absolutely freezing. I'm wearing jeans and a sweatshirt and my teeth were still chattering today. Although I'm also still walking around flushed and running a fever of 99.5. Not enough to get concerned about but just enough to make me constantly uncomfortable. The weight loss probably isn't helping me either. All my nice warm fat is being stripped away.

I actually did think of a positive today as I was getting dressed. Being a yo-yo dieter, I have an entire wardrobe in size 12, in size 10, and in size 8. There's a few size 14 and a few size 6 items in there as well. But definitely 3 entire wardrobes. So, with this weight loss thing going on, I don't have to spend any moulah on new clothes because there are entire wardrobes waiting in the wings. How sweet is that?

Sigh. So yeah, it's been a crappy week. My tech team received vanilla cream puffs today. They asked me if I was excited to only have 2 more appointments left. I told them that with the way I'm feeling, I'm not sure I'm going to make it! They pooh-poohed me and said I was doing great. Whatever. Okay, I'm done whining. I'm off to drug myself and crawl back into bed.

Tuesday, September 18, 2012

September 18 - Okay, feeling a bit better today so here's the scoop:

Doc thinks the thrush looks much better than it did last week so I guess the big, bad medicine is doing the trick. Yay!

My neck is looking burnt to all get out. It's not bothering me but it seems to be bothering both the doc and the tech team to look at it. Doc asked me if I was using the lotion they gave me. I told her it wasn't lotion, it's a healing ointment that is really thick and greasy and does not absorb into the skin so it's endangering my clothes. Heck no, I'm not using it. She told me to go ahead and use Lubriderm on my neck.

Then this morning, tech Maggie was riding me again, asking if I was using the ointment. I told her no but that I had gotten permission to use Lubriderm but then was feeling so crappy last night that I forgot to use it. She told me to write myself a big sticky note and use it tonight. Not sure why she's in such a state but whatever. I actually have Lubriderm on my desk here at work so maybe I'll pop into the bathroom and apply some just to get everyone off my back. Sheesh.

Meanwhile, I told the doc I was almost out of pain meds. She handed off a prescription for more Roxicet which I will pick up tonight on the way home. This was a load off my mind because the pain is obviously still getting worse as the treatments go on (especially swallowing!) but after next Tuesday, I will no longer be in daily contact with the peeps that could help me. Not that I can't call them after my appointments stop but being the self efficient little thing that I am, I'd rather get set up now to hopefully not need anything later on as things slowly heal.

I'm almost afraid to say this next part out loud. I told the doc how bummed I was about the 6-12 month wait for taste buds to come back on-line. She told me that she didn't think it was going to take nearly that long. She said the treatment being done on the left side of me, where I still have actual taste buds, is very light in strength, so she thinks it will bounce back much faster than what the nurse told me. I guess I'll just have to wait and see.

Meanwhile, I gleaned a little insight into the reasoning behind not giving me a feeding tube. I guess if you're just eating through your stomach, you can start having jaw movement and swallowing problems. As it is, the doc said I should start opening my mouth as far as I can 4-5 times a day to start stretching things out because currently, I am not able to open my mouth very far at all.

Speaking of eating, I added two new cravings to my board. Cheetos (extra crunchy) and MickeyD's french fries. <sigh>

Met the new tech chickie today. I believe her name is Melissa. She was quite bouncy and in my face which had me backpedaling a little. After 5 weeks, everything is pretty much by rote and has a flow to it. Melissa was like someone throwing a boulder into the stream, shook things up for a few minutes. :-)

I'm now down over 30 pounds since the start of my adventure. Sammy and I have been using Lose It off an on for a year or two now to track what we eat, how much we exercise, and how much weight we've lost (or gained!). I obviously have no need for it currently but just for kicks I went in and entered my weight yesterday. The steepness of the graph was a bit shocking and supposedly if I keep it up, I'll reach my ideal weight by Nov. 11! I'm a little worried that I'm going to come out of this with some kind of eating disorder. JT thinks those are something you form when you're young, not something that suddenly occurs when you're older. Not sure I buy it but I can only hope. Dr. K thinks when all is said and done I will be eating like the French. Small meals and small bites throughout the day. Sounds like a plan to me!

The graft site on my thigh is fine. It's a little dry and itchy once in a while but for the most part, it's not something I ever really notice. The wrist thing is okay. Still shocks me a little when I look at it. And my tech friend Paul was teasing me the other day when I went to get zapped and he grabbed my arm to give it a squeeze to let me know he was joking and he grabbed THAT wrist. Felt kind of skeevy and weird to have someone accidentally touch it. Hell, I don't even like to touch it. But I feel that way about all the scars on my legs too. The first time I went to see Dr. K she ran her hand down one of the scars on my calf from my car accident and I thought I was going to puke on her shoes right then and there because it felt so alien and awful. I guess it's just a scar thing (or maybe a me thing but whatever).

On a bright note, my man-servant is still working hard for me. The two yew bushes in the backyard that were taking up so much room in my tiny, city dwelling, yard, have been chopped down! He just needs to dig up the nasty roots and voila, I have a whole new yard! I'm VERY excited by this development. I can't wait to be hanging out back there next summer.

Okay, that's all I've got. I have a couple more tasks to complete here at work and then I'm taking off for home to get some pain meds in me. My tongue is killing me!

Monday, September 17, 2012

September 17 - Saw my little Indian doc today, she's such a cutie. She was congratulating me all over the place, talking about how well I'm doing with my adventure. I told her I still have 6 more treatments to go and based on how I felt this past weekend and again today, I'm not sure I'm going to make it! Not feeling good at all. Nausea, flushed, and basically feeling like a cement truck hit me. She still felt I was doing admirably well. Then I got home a couple of hours ago and once again have decided that I hate being a girl. I want to be a boy! They don't have to deal with this pain in the ass crap every single month!!! No wonder I feel like absolute crud!!

Anywho, enough of the girly rant, needless to say, I'm not feeling good so I'm heading up to bed. Just to add to the depression of the moment, I was plucking my eyebrows this morning and found (3) gray ones. Who the hell gets gray hair in their eyebrows??

More to come later this week............

Thursday, September 13, 2012

September 13 - Dr. K asked me yesterday if I thought I was just tired or possibly slipping into depression. I told her I was fine. No depression over here, just some crankiness. Think I spoke too soon. Talked to my tech team about the disparate info I was given on recovery. It turns out the 1-2 months is how long it will take for the pain in my throat to fade and my saliva to start thinning out again. 6-12 months is how long it will take for my taste buds to bounce back. NOW I'm depressed. And this of course lays waste to my whole plan to delve into some serious cooking this winter. Can't cook if I can't taste anything! So, I need to find a new hobby to set my heart on. Maybe getting a physical trainer to whip me into shape so that I can take up spelunking again next spring. Or possibly a quilting class. I don't know why that sounds fun but it does.

On a side note, I'm still pursuing purchasing a piece of land but I have now had four real estate agents respond to an enquiry of mine and then disappear when I send a second inquiry. Not sure what's going on with that. I might go to the bank and get a pre-approval on the land loan and see if that helps agents take me more seriously.

Started the stronger med last night for the thrush. Doctor very specifically told me that I need to take a teaspoon the first day and then 1/2 a teaspoon for the next 13 days. Then whatever is left over needs to be thrown in the garbage. Makes me think we've pulled out the big guns on this thrush sitch! Hope it works!

The 7 female employees where I work usually do a little 1/2 hour cake celebration for birthdays. Karen makes the most awesome caramel, fudge, heath, oreo, ice cream cake concoction on the face of this earth! Alas, my birthday is fast approaching and I will be unable to enjoy cake due to the health adventure. So, the girls decided to pitch in and we're going to do a little boardwalk segue tour here in Rochester on a Saturday afternoon. How cool is that??

Wednesday, September 12, 2012

September 12 - Okay, I still have thrush so tonight I will be picking up a stronger medicine to fight it off with. And I'm definitely under the impression that a lot of my pain is due to the thrush and not so much the radiation effects, which seriously sucks!

Went and saw my primary care doc today, Dr. K. Just to check in with her and review how things are going. I'm miserable, cranky, tired, hungry, in pain..........things are going as expected. :-) On the bright side, she was happy to hear that I quit smoking, am barely drinking, and have shed 25 pounds. Next on her list is trying to convince me to get the flu shot. I resisted. If it ain't broke, don't fix it. Why would anyone voluntarily get dead flu virus shot into their body?? I told her to let me ponder it a bit.

Radiation was more traumatic than norm yesterday. When I finished my frying session on Friday, Maggie (hot, young, blonde tech) was the only one unbolting me from the table. There are usually 3-4 of them buzzing around, one is removing the pillow from under my legs, another is lowering the table, a third is waiting for me to hand over my retainers, etc. I asked Maggie where everyone was and she said that Anne (older, soft spoken, blonde tech) took a half day, Wendy (sometimes grumpy, roly-poly, brunette tech) called in sick, and Paul (in touch with his feminine side tech) was setting up the computer for the next "customer". Then yesterday I noticed that Wendy still hadn't made an appearance and if she was sick for 5 full days then it must be some pretty awful bug and not for nothing, I sure as heck hope that I wasn't exposed to it! So, I asked Anne if Wendy was still sick and was told that Wendy "passed away" over the weekend. I was not given details and did not ask for them but based on a couple of comments such as the fact that today would have been her 40th birthday, I got the feeling that she may have offed herself. :-( Here I am going in for preventative radiation so that I can hopefully get a few more miles out of my extremely abused 40+ year old body and poor Wendy decides there just isn't any reason to go on. Serious bummer.

Then I got even more depressed after talking to the nurse about my thrush. I told her that Dr. A had said it takes 1-2 months after radiation ends for things to start bouncing back. My hope is that my taste buds are back online in time for Thanksgiving dinner. The nurse grimaced and told me that the taste buds are the last thing to revive and it can often take 6-12 months for them to be functioning again. WHAT?!? Talk about a bunch of crap. I'm so tired of getting different info from different parties. I'll see what my Indian doc says on Monday and I'll continue asking health care professionals until I get two answers that match!

Okay, I'm done griping for the day. Cranky girl is off to get zapped again and then in to work to clean up whatever customer issues have come to pass since 11:00 yesterday morning. <sigh> 13 more days to get through................

Monday, September 10, 2012

September 10 - Just a quickie today. Work is dead and so am I so I took a half day today and I'm about to drag myself up to bed.

Only down a pound. Doc decided to keep me on the miracle mouthwash for one more week. She's having a hard time telling if we're still battling thrush or not. I told her it would be useful if she could scrape my tongue, look at it under a microscope, and know definitively what's going on. She agreed but I guess that's not how it works. Today she gave me some healing ointment for all the scaly peeling that's going on with my neck, chin, and cheek. Pain is being managed okay. I paint viscous licodaine on my tongue during the day and talk as little as possible. Then take a shot of Vicodin at night. Countdown is continuing.

I can't remember, did I mention the poster board I hung up in my home office? I'm recording all of my food cravings. This way, when I'm finally able to taste, chew, and swallow food again. I can work my way through the list. Thursday night I wanted Cheese Nips so bad it was ridiculous. There are already 30 foods on the list. Dirty rice from Dinosaur, kettle cooked chips, a Schwartkoff sub from Guida's, fried dough, the weird salad Kunkel got at Pomodoro's, a fish fry, won ton tacos at Applebee's..........sigh..........I really, really, really miss food.

All I did was sleep this past weekend except for a 20 minute bright spot where I received a care package from Andy and Kim. Protein powder, a book, a dvd, a really nice smelling candle, a comfy you guys!

Thursday, September 6, 2012

September 6 - Okay, according to the doc's scale I lost 7 pounds. Still within the 10 pound range she gave me though so I shut her down when she started insisting I bump my Ensure uptake to 4-5 a day. Bleah. I can barely manage 3 without tossing cookies, thank you very much.

And I can't remember if I mentioned it in here before or not but I was supposed to be making an appointment with my primary care doc some time this month so that we could talk about how overweight I am and what I needed to do about it. I'm thinking I can now scratch that little to-do item off my list. :-)

So, hair loss is normal. I guess lymph nodes go beyond your hairline so it's likely that Dr. A mapped a radiation path that is effecting some of my hair follicles lower down on my neck. Should eventually grow back.

Magic mouthwash is mostly fighting the thrush, which the doc says is looking slightly better. I was a little surprised, my mouth is feeling a ton better now that I've been using that stuff but she said it's only looking a little bit better. Anywho, the other ingredients are Benadryl and a steroid. Both of which help with swelling and pain. I can keep taking it until the 'scrip' runs out.

And nope, I will never have sensation in my "tongue". Pain receptors do not magically grow back and connect themselves. It's just a hunk of flesh sitting in my mouth that happens to have a blood supply running through it. Showed it to Lis today. She said that the swelling has gone down quite a bit since I last stuck my tongue out at her. I've been so worried about the side effects of the radiation that I haven't been paying very close attention to it but I think she's right. Thank goodness!

In other news, my man-servant has been kicking some butt around my house. The lawn mowing is especially helpful because I'm just way too tired after work. Speaking of which, I'm heading up to bed right now. I can't wait for the stupid weekend to get here so I don't have to worry about anything but lounging!

Tuesday, September 4, 2012

September 4 - I think I averaged 14 hours of sleep for each of the 3 days this past weekend. I am one tired puppy! Back to the grind today and I'm falling asleep at my computer. Good news/bad news, we've been kind of slow the past couple of weeks. Good for me so that I can take my time and submerge myself back into the international optics world, not so good from a business standpoint. I've always said one of the most enjoyable parts of my job is the fact that there's always something new and different going on so it keeps things interesting on a weekly basis. But now, I've switched sides. Thank goodness I've been doing this for 14 years so that the bulk of the work is stuff that I can do in my sleep, because that's more of a reality than a pithy saying at this point!

Didn't get to see the doc today. Guess the holiday threw the schedule off so I should be seeing someone tomorrow. Questions on the table this week:

Q1: Why am I losing my hair?? I thought it was just chemo that caused hair to fall out but I'm having a definite problem over here. Thank goodness I have so much darned hair to begin with. At the rate I'm going, I won't need to pay my stylist $125 to thin it out any time soon!

Q2: I'm loving the magic mouthwash. Numbs everything up for quite some time. Is this still just a medicine to get rid of thrush and I should stop taking it after 2 weeks or can I continue using it for the duration of treatments??

Q3: Will my "tongue" ever have pain receptors? I'm assuming not, but I've had 4-5 peeps ask me about it now so it won't hurt to get the real answer with some backup info to boot.

I only lost 4 pounds this past week so I'm well within the threshold the doc set which has me feeling good. I wasn't sure that drinking (3) Ensures each day and nothing else was really going to cut it, but it seems to be just fine.

My customer service story for the week: I went to MY Wegman's (in Irondequoit) last week to get the magic mouthwash prescription filled. They didn't have 2 of the 3 ingredients needed. They (Tommy) called around and then sent me to Webster Wegman's but told me there was a 2 hour wait so it wouldn't be ready until 7:00. Fine, I ran some other errands and showed up at 7:04. Found out that they didn't fill my prescription because there was a $38 co-pay. They left a message on my machine at home and were waiting for my "okay". Huh? I'm miserable and in pain and you think I'm going to kick up a fuss for $38?? If it was $138, then maybe I can see a courtesy call but $38 seems like a really low threshold for this type of clearance flag. I was cheesed. They could tell. I had to wait for the prescription after all and none of us were happy. So, proactive girl over here, I called my Wegman's at the end of last week and asked if I could put an order in now to be picked up the following week (this week). I was hoping that would give them enough time to get the ingredients in and I wouldn't have to make the drive back out to Webster. I went in to pick it up today and I have no idea what stories were being passed around but Tommy waited on me again and he apologized for the 'trouble' I had at the Webster Wegman's and he knocked $10 off my prescription price. How awesome is that?? Now that, my friends, is some gosh darned good customer service. Love my Wegmans!

Okay, three weeks down, three weeks to go.