Thursday, October 31, 2013

October 31

As I sit here, waiting for kiddies to ring my doorbell, I figured it would be a perfect time to ramble at you peeps for a bit. And when I say ramble, I mean ramble. I'm not going to try to put this in any sort of coherent order. I'm just going to brain dump.

Today was the euchre tournament lunch. I was teamed up with Brian and we cam in second. Woo hoo! The lasagna and garlic toast were a hit. I also made Boston Cream Cupcakes. I went through three boxes of cupcake mix just to get 10 decent cupcakes. The stove that my mom gave me back when I moved into my house is great for cooking meats, casseroles, etc. but baking is always tricky. I've learned that it runs 25 degrees hotter than it should and can usually take that into account but for some reason, cupcakes were defeating me. It's too bad because they came out yummy and I still have a bunch of the cream filling and chocolate ganache topping to use up. Ah well. I guess I will be adding new stove to my wishlist of things I'd like to buy myself.

Yesterday was the first day with the new mask and the new radiation plan. So the 'cushion' they made for me is still hard as a rock, it's just contoured specifically to my personal head so they were hoping it would alleviate some of the pressure. I think it actually did help a very small amount unfortunately, the new radiation plan that is now targeting this huge ass tumor coming out of my neck is like 2 full minutes longer than the last radiation plan. That extra time of putting pressure on my skull kind of voids any help the 'cushion' was giving me. I just can't seem to win.

Had a blast with Kit yesterday. She took me to a place called the Ontario Antiques Mall. The place was huge!! I'm not into antiques so I wasn't sure I would actually be making any purchases but it turns out that I did, indeed, find a few treasures for myself. I got a beautiful flower vase, a couple of gorgeous crystal candy bowls, a glass fruit bowl, and a painting. I also found some Yankees stuff for my incredibly sweet man and even a funny birthday trinket for my friend Kunkel. Definitely a successful trip! And on the way home, Kit pointed out the Finger Lakes Race Track where I guess they now have slot machines and stuff. We're headed there next Thursday. This woman is a bad influence in her retirement! LOL!

I tried on all of my Halloween costumes for Scott the other night. I didn't realize I owned so many! There had to be at least 15 costumes! He picked out the Little Red Riding Hood costume for me to wear tonight. Alas, much like last year, I'm too tired (and too cold!) to play dress up. I took a good 2 hour nap today but based on how I felt when my alarm went off, I think my body would have been happy with two more hours.

Nurse Mary had me all worried about this nausea med that she prescribed for me. The first prescription was only good for 5 doses. I complained to her about the wussy amount so she went ahead and prescribed a 40 dose bottle but cautioned me that if, when I went to pick it up at Wegman's, it was really expensive and would break the bank, not to pick it up. She would get me some at a discounted rate through the hospital pharmacy. So I went to Wegman's all full of caution but the script only cost me $10! I must have much better insurance than other people. Also, my latest prescription of pain meds is for the stuff that's just oxycodone without the acetaminophen. Dr. Mike wants me to be able to take as much as I want without the acetaminophen limit hanging over my head. So that script has been costing me $25 a bottle at Strong but now that he changed it to be just the narcotics, it's only costing me $5 a bottle. Woo hoo!

It's a good thing I'm saving money on my scripts because I did my Wegman's shopping for the week on Monday and somehow managed to spend $325!! How the hell does a chick who can't eat spend that much money on food?? Seriously, it's crazy. And to go with all that food I purchased, I"ve been a cooking fiend once again this week. I made spicy, chicken stir fry and shrimp in a vodka pink sauce and chili and lasagna and red meat sauce and ........

Dr. Mike keeps asking me how my trip to Niagara Falls was every time I see him but we're always walking somewhere or Dr. S is ready to continue with what we're doing, or something prevents me from giving him any more detail than two thumb's up. Well, I finally got some one on one time with him back on Monday and he I started writing my little heart out telling him all the truly awesome stuff baby doll and I did and what an absolute blast we had! He was blown away. He couldn't believe how much stuff we were able to cram in, in such a short period of time. :-)

Dr. S was so cute when I gave him his 7 layer bars. He told me that he'd bring my "box" back to me. Not my container, not my Tupperware, but my box. It made me smile. And when he did bring my box back to me and left it with my radiation team, he also left a really nice thank you note signed with his first name and everything. He's such a cutie!

I dropped something on the floor the other day and it rolled under the rack next to the dryer. I knelt down to retrieve it and much to my surprise, I was able to bend my right leg all the way. Woo hoo! I've been really worried about not getting the full range of motion back in that leg. Not worried enough to be working on it of course, but whatever. Turns out it healed enough on its own that I once again have full use of it.

I've been coming up with new systems for all this cooking that I've been doing. The first system I had to put in place was labeling everything that goes in my fridge/freezer. I discovered a container of something red a few weeks back and had no idea what it was. To make matters worse, I can't taste or smell so other than eyeballing things, I have no way of figuring out what they are! And it's amazing how similar chili and red sauce and BBQ sauce can look to each other. Ha! So everything now gets a sticky put on it. The other system change I had to make was to my recipe book. I had commented before that if a recipe comes out good but doesn't knock the socks off of baby doll, then it gets tossed, rather tthan put in the book to be made again. Well, when Toby and Pamela were over on Sunday, Toby wanted me to give Pamela the recipe to a shrimp mac salad that I had brought into QED the week before. Unfortunately, the reason the bulk of that salad made it into QED was becuase baby doll didn't think it was any great shakes. process. Even good recipes make it into the book but the really stellar recipes get a little star put up in the corner of them. Luckily Sammy sent me some motivational stickers in the care package she shipped to me. I think they were sent to make me laugh, or maybe the kids picked them out for me. Either way, they're coming in handy!!

I had a bad day on the radiation table yesterday. Right at the end of the treatment my OSL clogged and I couldn't breathe. I had a hairy heart attack! I was flailing my arms all over tyring to get the girls to hustle in there and unstrap me from the table. It happened again twice during the day too. I'm suddenly producing a lot more mucus than I have been. I'm not sure if I managed to catch Mason's cold or if allergy season is kicking in. Meanwhile, I removed my OSL before letting them strap me to that damn table today.

I also had a bad day with my PEG on Tuesday. Although it was a really good day as well. I FINALLY remembered to ask Joanna, the nutritionist, about syringing the Jevity instead of putting it through the gravity bag. She said syringing it was no problem at all. Hallelujah!! No more hour long bag feeds!! No sooner did I syringe it yesterday though and my PEG started hurting.....bad. Inside, not outside. Just the slight bounce from walking was making it hurt. Not good. I told my radiation team about it. They called in a nurse to see me after my treatment. She couldn't figure out why it would be sore. Neither of us really thought it was from syringing the Jevity. She told me to go back to the bag feeds for a couple of days and see if it helped. Well, screw that. It was a good idea but I was way too excited about eating in 5 minutes instead of it taking over an hour. So, I continued to syringe and the PEG is much less sore as of today. I'm not sure what caused the soreness but so long as it's going away, I'm not going to worry about i.

Upstate didn't even bother to contact me back about my missing items, they simply delivered them to me Monday afternoon. They're communication skills might not be great but at least they take care of business!

Okay, I think that's more than enough rambling. It's time for pain meds again. The burn inside my mouth and throat are getting noticeably worse on a daily basis. On the bright side, the drool is definitely slowing down. I can leave the washcloth out of my mouth in half hour increments now.

Type at you later!

Monday, October 28, 2013

October 28

The Euchre lunch last Wednesday was a blast! This definitely needs to be a weekly thing. This week we're doing it on Thursday and there's so much interest that I think we're going to be able to pull 8 players together and do a little mini tournament. How cool is that! Lunch for this Thursday is lasagna and garlic toast. Something that I just need to pull from the oven and serve without too much fuss so that I can concentrate on kicking ass at cards!! Bring it!

So, Thursday I had my radiation appointment in the morning and then had to go back to the hospital in the afternoon for a 1:00 with Dr. Miller. He said everything is healing up nicely. He asked if I had tried drinking anything through my mouth. I told him I had and about coughing stuff out my stoma. He took a look and said there is still a pinprick fistula (hole) between my throat and trach. He thinks it will be totally closed in another 2-3 weeks and asked me not to try drinking anything until then. He also looked at the nodule on my neck and called it a weird word. I asked what it meant and he said "a sac filled with fluid". I told him that Dr. Singh seemed pretty damned sure it was cancer. Dr. Miller said they really couldn't say that without a biopsy but he said based on how aggressive my cancer has been up until this point, he's okay with Dr. Singh's assessment. Better to be on the cautious side. Other than that, I think I'm officially done with Dr. Miller. I do not have any more appointments set up with him. I'll still need to see Nurse JoAnn when she gets back from vacay so that I can collect the trach covers she's having the volunteers make for me but otherwise, unless more surgery is needed somewhere down the road, my hottie, half glass full surgeon is out of the picture.

After my appointment I buzzed over to the FedEx offices and surprised my baby doll for lunch. We sat and played cards in his break room and I filled him in on all that the doc said. I was a little worried about popping in on him like that but I was in dire need of a hug. It was totally worth the trip, he lit up like a Christmas tree when he saw me outside his office window looking in. Yeah, a bit creepy stalker-ish, but whatever. Ha!

Friday I got my next food delivery. No sooner did they arrive to drop off, Toby showed up as well and I was making him some Chicken Mole for lunch. Normally I'm very anal about checking in what the driver drops off but I was distracted by food bubbling in the wok and making convo with Toby. I didn't discover until yesterday that the delivery slip I signed off on said they delivered all sorts of stuff that I did not recieve. WTF?? These people are CONSTANTLY screwing up! They delivered food (no clue if they delivered the amount they said they did but I've fallen a little behind on my eating so if they shorted me, I won't notice) and they delivered the gravity feed bags. They said they delivered syringes, PEG tubes, tape, and gauze pads. I didn't get any of that. I had to send an e-mail yesterday asking what the heck happened and can they bring me my stuff they shorted me. I still haven't received a response today. This company is supposedly located in Syracuse and has offices in 4 major cities. You would think they'd be professional and have a clue but I'm continuing to be really unimpressed with them. I would research who their competitors are but every time I mention to someone at Strong that I"m working with Upstate, they get all excited and say that's one of the better companies. I'd HATE to see a half assed company!!!

Saturday, my man and I headed to Liverpool to see Sam, Mark, and the kiddos. We had an awesome time! I made up trick or treat bags with all sorts of goodies in them. Sam and I then hid them and we made out a treasure hunt for the kids to follow again. They love doing those things although there's a ton of arguing along the way. I guess that's siblings for you though. No wooner did I walk in the door, Sam commented on the washcloth hanging out of my mouth. I guess it's one thing to read about stuff in my blog but it's a whole other thing to see it in person. She also thought the whole charades things that was happening off and on all day was a lot of fun. She's such a geek. :-)

The trip took its toll on me. I was in bed at 6:00 that night and I didn't get up until 9:00 am Sunday morning. That's a crapload of sleep! I've been doing that a lot. Sleeping that is. On the bright side, all that sleep gave me some banner energy yesterday. I spent 3 hours cleaning my house from top to bottom and then did a bunch of cooking and baking. Toby and his wife stopped by to say 'hi' and I made them dinner. Cheddar chicken, baby roasted potatoes, and steamed asparagus. We're now making a plan for them to come over on a week night to do dinner and cards with                                                                                       me and baby doll. He and I haven't interviewed any couple dates in a while so I'm looking forward to it!

Today sees me back at the hospital for a full day. After radiation I had to get fitted for a new mask for 3 different reasons. 1) I've lost some weight so my mask isn't fitting as snug as it should. 2) I mentioned I was trying to suck up the pain that the pressure on the back of my skull is causing but it made me cry on Friday so they re-fit me with a "cushion" under my head to see if it helps. 3) They wanted a new scan because they are, indeed, going to target the node on my neck. I'm now sitting here waiting to see a chemo nurse and at 12:30 I have my chemo treatment.

I brought 7 layer bars in for everyone today and have been handing them out like crazy. Receptionists, Dr. Mike, Dr. Singh, everyone gets some of the chocolately goodness in my bag. I also brought in a bag of yarn to donate to the ladies who make the lap blankets. Talk about coming in loaded for bear! All of that on top of my lary bag that I bring in with me on Mondays. Other days I leave it in the car but on Mondays, I liike it with me.

Okay, that catches you up on all that's been happening over here. Like I said, there's been a lot of sleep in between all this nonsense so my blogs are likely to be pretty damn boring for a while.  Not that I"                                    m complaining. I've had enough excitement to last me a lifetime at this point. :-)                                                                  

Wednesday, October 23, 2013

October 23

So the big day had some ups and some downs. Jer dropped me off in the morning. The entrance that I go in now is super convenient. I walk down a flight of stairs and voila, I'm at the radiation center. I did, indeed, get to see Dr. S for a brief moment. He's VERY unhappy with the tumor on my neck. He said that we'd proceed as  planned for now but he was going to talk to Dr. Miller about this re-occurrence. The radiation itself went really fast. I spend less than 10 minutes in the machine. The one bummer is that with my neck being even more stiff now than last time, when they screw the mask into the table, it torques my head funny causing some pressure on the back left side of my head and it's a damn uncomfortable 10 minutes. They tried putting a little cushioning down for me but it didn't really seem to help. Guess I just need to suck it up. I should start planning my pain meds better too. Take them right at 8:15 as I"m walking out the door so that they're in full effect at 9:00. Next I was in the infusion center giving blood through my port. That process stung a little the whole time but it was bearable. Then I had an hour and a half wait to see Dr. K. Finally saw him, he said my blood looked good so chemo was on. Went back to the infusion center for another hour wait and finally got down to this chemo business. I had brought my lary bag so that I could do foods and meds at noon. Dummy that I am, I forgot to bring one of the adapter tubes for my new PEG. So, I was SOL. Then a stroke of luck happened. The chemo nurse needed to give me some meds through my PEG so she called upstairs to LiLo and had her 'tube' down an extra adapter tube for my PEG. SCORE! It now permanently lives in the lary bag. So I'm scrambling to get plugged in because by this time I'm starving and in need of pain meds and a volunteer wandered into my room. She sat down and introduced herself and gave me a gift of a crocheted lap blanket. She got me so distracted that I forgot to check to make sure the adapter tube was locked and the next thing I knew I had spilled stomach bile all down my leg and onto the floor. I was not pleased. She finally went away and I was left in peace. Nurse Mary had told me that it would be a 3 1/2 hour procedure. Turns out that's not the case. Although it could be the case if I fail to pee as much as they need me to or if the lab doesn't get my chemo mix made up in time for my appointment. But if everything goes okay, then it's only a 1 1/2 hour appointment. So Justin came and picked me up when all was said and done. He then buzzed me to Wegman's to grab a prescription and I was home by 4:30.

Taking the nausea meds is mandatory the first two days. You would think this would insure that I wouldn't get sick. Yeah, no. I ate a milkshake at 10:00 on Monday night. Went to bed around 12:30 and was then up 3 times during the night. Not because I was vomiting though. The milkshake kept coming up into the back of my throat and then it would leak over into my trach causing me to cough milkshake out of my stoma. Very unpleasant!! It continued happening the following morning after I got up too. I mentioned it to Joanna, the nutritionist, who happened to want to see me yesterday after radiation. She contacted Dr. Miller's team and I now need to see a nurse about it tomorrow at 11:30. Crap. I ended up not eating all day yesterday until 8:00 pm. Then I did 2 cans of Jevity. The regurgitation thing happened again at 10:00 pm but then I was fine for the rest of the night. I'm eating breakfast right now so we'll see if it continues to happen. One of the nurses today said that they can always prescribe me Prilosec or something for acid reflux.

I sent Dr. S an e-mail yesterday about my plane tickets to Florida from 12/2 - 12/7. He has me scheduled for radiation through 12/5 so I'm def canceling that trip. It's probably just as well. Dr. M filled out a claim form for the insurance company for the cruise refund saying that he didn't want me traveling for a year. I could probably get binged for insurance fraud if I took my Florida trip anyway!

Today I was done with radiation by 9:05 but had more unexpected appointments like the Joanna one yesterday. Today I met Clair and Carol who work with Dr. S. They just wanted to say 'hi' and make sure I was doing okay. Then Dr. S himself stopped in. He can't tell if my tumor is getting smaller or not. He said we'll give it to Monday. If it doesn't look smaller by then, then he's going to change his radiation plan to fully target just that nodule for now until we can blast it out of there. He said the second tumor had already been creeping down to my stomach and up to my brain so he doesn't want this third one getting a chance to do that as well. I asked him how he knew it was a tumor and not a cyst of some sort. He said it's very clear just by looking at it that the cancer is back. :-( So, Monday we'll see what's going on. Then they sent in a social worker to talk to me. she gave me a handout for a support group that meets every month. She also said that she can help me with paying bills if I start falling behind, or social work can even cover the cost of some of my prescriptions. She said to keep in touch with her.

So, that's the scoop for now. I AM feeling a bit run down but that might be because of not sleeping well. Today the boys are coming over for cards again. They will be munching on bourbon-mango pulled pork sandwiches, a cold dill pasta salad that includes diced ham, cheese, and grapes, and for dessert, chocolate lava cakes warm from the over with a scoop of vanilla ice cream, gently melting on the side. And here I thought my grocery bill would go down to nothing since I can no longer eat.........I guess there are more expensive hobbies I could have though!

Sunday, October 20, 2013

October 20

Tomorrow is the big day. Thank goodness. A) I've once again been feeling like I'm treading water in this whole fighting cancer business so it will feel good to move forward again. B) I can't wait for radiation to start making my saliva glands not work again. Yeah, it feels weird to be saying that but I'm over this whole washcloth in the mouth thing. Plus, I think it's starting to throw my bite off! C) The tumor on my neck is still growing. Dr. M said a few weeks ago that he's hoping radiation will take care of it. I'm hoping so too and hopefully it hasn't spread too very far in the meantime. This particular strain of cancer that I have seems to be SUPER aggressive. Grows like a weed and starts spreading its nastiness quickly. I can only hope that it hasn't already started creeping up to my brain or something. <sigh> I'm kind of wondering how fast radiation should work on it and how it will manifest. Will I be able to see this tumor visibly shrinking? I'm going to have to ask Dr. S about it. Not sure if I get to see him tomorrow or not but I think that I will for sure get to see him every Friday just like I did with Dr. A the last time I went through radiation.

So on Wednesday I had my new MIC-KEY (low profile) PEG (feeding tube) put in. Oh man, I LOVE this thing! No more getting it snagged on my clothes when I'm dressing or undressing, no more unsightly bump under all my clothing, no more boo boos from where the other one was hanging down and rubbing, this thing rocks! It came with two adapter tubes. A skinny one for my gravity feeds and a fat one for anything I need to take by syringe. Unfortunately, I think the skinny one is even skinnier that the original PEG because it simply takes FOREVER to do a feeding. If I lay down while I 'eat', I can finish in a little less than an hour. If I'm up trying to get other stuff done while I'm 'eating' it takes over 2 hours to finish. Talk about a pain in the ass. That's a huge chunk of time! Think about it. I have to be at the hospital at 9:00 tomorrow morning which means Jer will be swinging by to pick me up at 8:15 (Kunkel is going to come get me in the afternoon around 4:30 - 5:00). I need an hour to feed, 20 minutes to take care of pets, and an hour to prep myself (and that's without taking a shower!). This means I have to get up at like 6:00 every morning to make my 9:00 radiation appointments all week. Bleah. I should have gone with the other time slot they offered me which was at 2:30. I don't know WHAT I was thinking!

Anyway, had an awesome 'lunch' break with Kunkel on Wednesday. I keep forgetting that I just had a birthday. She brought me some awesome prezzies! A birthday package from Andy and Kim arrived this past week too with some more awesome prezzies! I'm so spoiled. :-)

Had my hearing test Thursday morning. My hearing is outstanding. The chick that administered the test also assured me that the likelihood of chemo affecting my hearing is extremely low. She said she's been in audiology for 30+ years and it's usually kids or older adults who already have a hearing problem that get affected by chemo. She said that she would be good money that I don't get affected at all. That was a relief to hear!

I left the hospital at 11:15 which was just in the nick of time because Jer, H, and Ray B were coming over to play cards at lunch. I got home and became a little whirlwind in the kitchen. They ended up eating spinach/artichoke dip to start, beef teriyaki stir fry as a main meal, and brownies still warm from the over for dessert. Jer was flabbergasted. He doesn't understand how I pulled all that together when I couldn't have been home more than 15 minutes before they showed up. What can I say, I'm just that good. Ha! I was spoiled on this day as well because I received a dozen roses and a really cool seasonal wreath for my front door. :-)

Later that afternoon the furnace dude came. He spent 45 minutes checking and cleaning my furnace. He says it's in wonderful shape so I'm good to go for the winter. This is good because my furnace started kicking on this week. I'm happy to say my new whole house humidifier seems to be working well too!

Friday morning I was up early to see my PCP, Dr. K. She said that my thyroid is now way overactive due to the meds. She's surprised I haven't been seeing any of the usual side effects from that. Feeling exhausted but unable to sleep, constipation, nervous twitchy energy, weight loss. Anyway, she lowered the dose from 200 mg to 175mg. I go back on 12/3 so that she can check it again. She said we're just going to incrementally back it off until we find the sweet spot.

Speaking of weight loss, I was bummed when I hopped on the scale this morning. I'm down to 108. My new all time low. No clue why it's going down. I'm eating 7, sometimes 7.5 cans of Jevity a day plus I'm supplementing here and there with CBD's and milkshakes. I can only assume it's the large knob on the side of my neck. My poor, little body is fighting that damn thing furiously. I've been super low on energy the past week or so too as you might have gleaned from my lack of blogging. I'm having a hard time getting excited about much of anything. I apologize now to those of you who aren't getting a lot from me in response to e-mails, texts, and FB posts.

Bright spot, I've finally calmed down with the pain meds. For the most part I'm only taking them every 6-8 hours now. I'm guessing that will change again once the chemo and radiation treatments start taking effect but I've been a good not-so-addicted girl this past week. :-)

Yesterday my buddy Alex from NYC popped over to visit for about an hour (with flowers in hand, I so love my flowers!). I was e-mailing him on Friday night and he said that he could only see me from 2-3 and then had a plane to catch so I couldn't feed him dinner. Little did he know that still didn't stop me from cooking. During his hour visit I had him taste test three new dessert recipes for me. Chocolate pots, pecan pie bars, and peanut butter bars. He and baby doll said all three were a success. The recipes are going in the book and the leftovers are going to the peeps at QED tomorrow. This week, if I actually have any energy to cook, I'm trying out a bourbon-mango pulled pork recipe and a chicken mole recipe. Yum! Man, I really do miss eating sometimes.

I think that's all the excitement that I have to report. I'm heading back to bed to continue being a lump. I see a lot of that in my future. Thank goodness I finally bucked up and bought that new mattress a few months back. That thing is like laying on a cloud! I love it!

Tuesday, October 15, 2013

October 15

So, my kick ass meatballs were a huge hit at the party. The turkey cookies went over really well too. The chocolate caramel pies were largely ignored. Guess that recipe is going in the trash! The party was fun. I finally got to meet baby doll's dad. What a sweetheart! I was kind of expecting a ball buster because I know he used to be a school principal but he was a big ol' softie. I was telling him how much I love his son. He said that it's easy to see how much his son loves me too. I told him I know. Scott shows me every single day, in all sorts of little ways, exactly how much he loves me. His dad got a little teary on me!

A good example of how awesome the baby doll is:

I didn't get a lot of sleep before this party due to my excessive cooking. Plus, I knew that his niece had sent out a general invite on her FB page so there was going to be a crapload of people there that I didn't know and here I am mute, with a washcloth hanging out of my mouth, heading to a shindig of strangers. Yeah, I was feeling pretty intimidated. Then as we were getting into the car to leave my OSL clogged and I had to run back into the house to clean it and do a quick suction of my lungs. Irritated the hell out of me so I was kind of slamming around and acting huffy. Baby doll walked me back out to the car once I was ready to go again but before I got in, he swooped my up into a big hug and simply started talking. He told me how fantastic I am, how much he appreciated all the work I put into cooking for his family's 'thing', how brave I am, and how much he appreciates me. There was like a 5 minute long pep talk. It was one of the best things ever. I didn't even know I was in need of one of those but somehow he knew and the rest of the day went just fine because of it. So once again, and I can't say it enough, I totally love that man.

Tony, who is married to Steph, who is Scott's niece, who's daughter we were having the party for, phew, how convoluted was that?? Anyway, Tony's dad walked up to me, bold as brass, and asked what was wrong with me. Turns out he's a cancer survivor too. Bladder cancer. He ended up seeking me out 3 different times during the party to 'chat'. He was an absolute doll! And the last time he talked to me he hugged me, told me how beautiful I am, and that he loves me. Sheesh. I get love coming at me from all sides nowadays. I should have gotten cancer sooner! Oh, wait a second, what the hell am I saying........

At one point I walked past an 8 year old boy who stopped me and asked me what happened to my neck. I tried writing to him that I had a boo-boo but he didn't seem to understand and I'm unclear of the reading abilities of 8 year olds. The only kids I ever hang out with our Sam's and they're like 300x smarter than any average kid. So, I mimed for the kid. Who's name is Shanyn by the way. I made a slicing motion across my throat, then grabbed my throat and staggered. When I repeated this mime for babydoll later on that night I thought he was going to wet himself. He was like holy shit, did you scare the kid half to death?? Shanyn was fine. He looked at me all wide eyed for a moment and then asked "Did it hurt?". Well, yeah, it hurt. I ended up running into him later on in the night and spent about 15 minutes answering questions for him. He wanted to know how I ate, so I showed him my PEG. He wanted to know what kinds of food I could put into it, etc. Then he told me he liked it better when we were playing charades rather than me writing to him on my boogie board. Turns out he does have some reading ability so long as I use short words. Which is a lot harder than you'd think!! I told him I was good at charades. He was like cool. So, guess what I'm thinking right now? I was like huh? I wrote to him that I wasn't psychic!! He couldn't read the word psychic but I think the rolling of my eyes clued him in that he wasn't playing the right game. So he then said okay, guess what I'm doing and starts frantically pointing his fingers at the ground. I guessed that he was using a jack hammer. Can I tell you, when kids look at you like you're the dumbest thing they've ever encountered, it can be pretty humbling. It turns out the correct answer was that he was pointing at his toes. Silly me. He informed me that I'm not very good at charades after all. I laughed and gently excused myself. What a pistol that kid was!!

So, it was a good time. I was freakin' exhausted by the time we got home and I think I was in bed at about 7:30 that night. Didn't get out of bed until 8:30 Sunday morning. Phew! Sunday found me productive as all get out. My house was absolutely trashed and I still hadn't unpacked from our trip or caught up laundry or anything! So the entire day was spent on cleaning and unpacking. I was only halfway done cleaning the kitchen which was my final room when baby doll arrived. It's now Tuesday, soon to be Wednesday, and I still haven't finished cleaning the kitchen. Sheesh.

Yesterday was a balls to the wall type of day. I was up and out of the house by 9:30. Dropped off 6 boxes of clothes at the thrift store. Went to the lab and gave blood for my TSH test. Stopped at QED to mail a package, shred some documents, and pick up my tupperware. I also had to write and fax an authorization letter. The Hartford insurance company had called and left me a message asking me to call them back. This is the company handling my short term disability. Scott called them back for me on Monday but they wouldn't talk to him because he wasn't authorized to represent me. Whatever. I wrote up an "authorization" and sent it over to them. They immediately called him to let him know that I've been approved for the full 6 months of short term disability and that they would contact me sometime in January to see if I was going to need to switch over to long term disability. God, I sure as hell hope not!! Anyway, then it was off to Wegman's to pick up prescriptions. Then to Strong. I dropped off the crochet thread for Jo Ann. She's going to have her volunteers make me a couple of stoma colors in each of the colors that I bought and anything leftover should be considered a donation. Sidebar: By this time it was lunch time and my PEG was cramping like crazy. Can I tell you that putting powdered milk in my lary bag was a banner idea?? I went ahead and mixed up a liter of CBD right there in the waiting room and 'ate' a meal before my 1:30 appointment. Phew! So, my 1:30 appointment was to get my port site checked. The doc said it looks good and is ready for use. He also gave me permission to shower. Oops! I didn't realize I needed permission. I had already showered the night before because they told me I could after a week. Well, it had been a week, what can I say? Then it was back upstairs for my 2:30 with Dr. K, the chemo doc. I got all sorts of interesting info at that meeting:

- I need to drink 2-3 quarts of fluid a day and they will be measuring my pee before each chemo treatment. They won't start the treatment until I've passed a certain amount of pee. And if for any reason I am suddenly unable to pee, I need to contact them immediately. Huh?

- Baby doll has to use a condom for the 48 hours after a chemo treatment or else some of the harmful chemicals they're dumping into me could get passed over to him.

- Thinning of my hair. Luckily I own 30+ scarves and a number of hats for this particular happenstance. Plus my friend Kit gave me some hair goop that helps thicken hair and she said it really works! So, I'll have to test it out once the hair thinning begins.

- If I start running a fever higher than 100.4, I need to contact them immediately.

- If I start experiencing numbness or tingling in my extremities, ie; if I suddenly have difficulty buttoning buttons, I need to contact them immediately.

Basically, Nurse Mary told me to contact her if absolutely anything in my body changes in any way. She wants us to stay on top of (or in front of, if possible) any potential badness that the chemo could cause. Sounds like a stellar plan to me!

I finally got home around 4:30........long day..........and started puttering. Laid down for a bit too to try to recoup some energy for baby doll coming home from work at 8:45. Last night I tried out THREE new recipes on him. First was a recipe for spinach artichoke dip. I actually have two recipes. After reading them both I started to go into a panic. One of them called for TWO packages of spinach and I had only bought one and the other recipe called for a jar of Alfredo sauce, which I did not have. I then remembered that I had recently seen a recipe for Alfredo sauce in my pile of "recipes to try". Lo and behold, I had all of the ingredients to make it including the heavy cream which I had over bought for the chocolate caramel pies!! I have no idea how the sauce tasted stand alone but it certainly looked yummy when it was done and if baby doll's moans of pleasure when he was eating the dip were anything to go by, then both those recipes were a huge success! The main entree recipe for last night was a beef teriyaki dish. And again, baby doll was over there mmmming and ahhhhing through the whole bowl. Licked the damn thing clean too! I told him all of those recipes were keepers for the book but I am now rethinking some of the other ones that he deemed keepers. I made that champagne shrimp and pasta dish a couple of weeks ago and all he said was that it was 'tasty' and he didn't finish what I gave him. According to him it's a keeper but I'm starting to think there are degrees of yumminess at play here. And as far as I'm concerned, I only get to cook for him twice a week so if something isn't absolutely outstanding when I cook it, why bother ever cooking it again? I'm sure I can find 100 absolutely, over the moon, fantastic recipes so there's no need to keep the so-so recipes. If we keep all the so-so ones, I'll never get around to making him the Scott Hibb's Infamous BBQ ribs again that he seems to adore........or the cajun shrimp with mardi gras rice that is one of his faves........or my new spicy meatball recipe that was such a hit. I need to go back through the recipe book and do a clean out........

And speaking of all this uber fattening food. I had told Scott a number of months ago that if things got really horrendous with me, I would break up with him to save him from having to break up with me. I didn't want him staying with me out of pity and if he did dump me, he'd look like a total douchebag for dumping cancer girl. So, I told him that I would take on the responsibility of ending it if things got bad enough. Well, I changed my mind. And I told him so when we were in Niagara Falls. I told him I didn't care how selfish it was but I was never going to break up with him because I simply can not imagine my life without him in it. He's stuck with me for the long haul whether he likes it or not. His response? "Oh good, now I can get as fat as I want and I know you won't break up with me because of it.". That man just makes me laugh! He's such an adorable dork.

I had an ultimate blonde moment in Niagara Falls. We were shopping in a souvenir store and there were personalized piggy banks. I happened to come across one that had the name of my friend Chris' baby on it! Chris just became a first time father a few short weeks ago. He's the one that sent me the ASL books and all the great resource info on learning ASL here in Rochester. Anywho, I was all excited about this piggy bank. I figured I could stick $20 in it and ship it down to him in whichever of the Carolina states he lives in. So, I get home and I'm filling out the card and I hop on FB to double check his wife's name. Thank goodness I did. The piggy bank I bought has the name Jackson on it. He named his kid Carter. WTH?? In my defense, I'm pretty sure on one of his visits to Rochester he told me that Jackson was in the top 3 of names they were thinking about. Unfortunately I think it was my fave so it kind of got stuck in my head. Of course, I need to confirm this with him. If it turns out Jackson was never in the running as a name then I have some serious issues going on. Meanwhile, now I feel the need to go baby shopping..........

This morning I had my dentist appointment. Yes, I was able to get in with my own dentist and mentally flip Cindy the Wondergod the finger. Dentist says my teeth look outstanding! She said there's not a speck of plaque to be found. I was a little surprised since it's been almost a year now since my last cleaning. She said as far as she can tell, all systems are go for radiation to start on Monday. She said her only concern is that where they pulled my tooth to split my jaw, the bone is showing. She has no idea if it should be like that or not or if the radiation will effect it at all or not. She's going to send a note to Dr. S to ask him. I also mentioned that last year the dentist at RGH had made me some retainers for my bridge and my crown to wear during radiation. Nobody has said anything about me needing those this year. At first I thought it was because they were going to be radiating mostly in my neck instead of my mouth but if that's the case, then why did Dr. S insist that I see a dentist to get my teeth checked? The dentist said she'd ask about that as well.

Right after that appointment I ran to the bank to grab some cash and then popped back home to prep for my outing with Kit. I was only home for 5 minutes and she showed up. Thankfully I had already prepped my purse and lary bag earlier in the morning so I was almost ready to leave. She took me to the Ronald McDonald Household Sale today. Holy cow. Biggest tag sale I have ever witnessed in my life. The place was huge! There was so much stuff that there were still boxes under all of the tables of stuff they hadn't even gotten unpacked and tagged yet!! I might go back on Friday or Saturday. By then I think everything is marked at 50% off. Meanwhile, I made out like a bandit today. I spent a total of $125. Here's what I got:

Playstation II
5 PII games
6 computer games
6 puzzles
Scene-It DVD game
~15-20 rolls of what I think might be crochet thread. I'm not sure. The whole bag only cost me $4 so I figured what the hell, I'll drop it off to Jo Ann tomorrow and see what she says.
2 flower vases for the flowers that my beautiful man brings me every other week. ;-)
15 little tchotchke items, some of which are gifts
A bread board
A spoon rest
A veggie chopper
3 purses
2 hats
2 picture frames
3 boxes of Christmas cards (and two of the boxes are cards where you can insert a picture into them. I want to take a holiday pic of me and baby doll. I'm hoping that he'll wear a Santa hat and I can wear reindeer antlers. Yeah, yeah, cheesy as hell but hey, everyone needs to let a little silliness into their life now and then!)

It turns out when we were going through Fear Factory (which was hugely scary I might add!!) they took a picture of us. You can't see me because I'm behind baby doll but he's all hunched up and looking behind him. You can tell he's a little freaked! It's sooooo cute! I had to buy it. I'm hoping it fits into one of the frames I bought today.

I'm so excited that Kit turned me on to this sale and that she let me go as a guest on her ticket. She's the absolute bomb!! And it felt good to do something fun with her for once. She has been totally fantastic about giving my sorry ass rides all over the place but I want to balance it out with fun friend stuff too! The sale didn't open until 2:00 but it's such a big deal that people start lining up for it at noon. We got there around 12:20 with our newly purchased push shopping carts for the occasion (boy, did they come in handy!) and her sister and niece were already in line so we joined them. Closer to 2:00 her daughter Sara arrived with her brand new fiancee. He just proposed last night! Her rock is gorgeous and she was glowing!! Anyway, that girl (she's 37 by the way) was such an absolute sweetheart. You can totally tell that she's Kit's kid. She was momming me the entire time we were there. Wanting to carry stuff for me, asking if I was okay, if I needed to rest, carrying on a conversation with me and being very patient about my having to write everything out, I felt like I had my very own personal aide for the day! And it certainly didn't hurt that she's wonderfully easy on the eyes......again, just like her mom! I told Kit that I'm surprised that she's a scientist (a botanist, I think). She totally has what it takes to be in the health care world. Although, maybe not. She did get teary a couple of times while I was talking to her. I seem to have that effect on a lot of people these days. Ah well.

Once again I am out of pain meds. I took my last dose at 8:30 tonight. My insurance won't pay for the refill until tomorrow so guess where I'm going to be at 8:30 tomorrow morning?? 3 guesses and the first 2 don't count. Then Kunkel is coming over around 11:30 to visit me. I haven't seen girlfriend in forever! I didn't even pop in to say 'hi' to her when I stopped at QED yesterday because I was in such a rush to get things done and was being waylaid by a bunch of peeps as it was. What should have been a 15 minute pop-in turned into a 45 minute visit. Anyway, I'll get her all to myself for an hour tomorrow. Then I have a 1:30 appointment to get my MIC-KEY put in. I can't wait to see how this low profile PEG looks and feels. It HAS to be so much better than this 8 inch tube hanging off of me. And I noticed the past few days that the tear in the stopper has started to leak. There have been damp spots on my shirts. So, I'm getting a replacement just in time. I'm hoping to be back home by 3:00 tomorrow at which point I plan on being a total slug. There has been way too much running around already this week and it's only half over! I'm not even working and yet I'm looking forward to this weekend because I have zero plans!!

Plus I'm really going to need to fortify myself for Monday. They struggled with the timing for this first week. Hopefully they'll be able to improve it in the upcoming weeks. Here's what Monday looks like:

Radiation - 9:00 - 9:30
Blood draw - 10:30 - 11:00
Check in with Dr. Kim - 11:00 - 11:30
Chemo treatment - 1:00 - 4:30

It's not even going to be worth leaving the hospital between 11:30 and 1:00 so I had better make sure my iPad is fully charged because I'll be spending some time playing some games. Either that or catching up some e-mail. My poor friend Karen. She's written me 3 times now and I still haven't written her back! Am I a slacker friend or what?? On the plus side, she reads the blog, so she knows what's happening over here. I just feel like I need to write her something though so that she will continue to fill me in on what's going on with her. I love hearing about the things that are cheesing her off for the week. She's so funny when she goes on a rant!!

I've been shackled once again as far as driving. At least for this Monday. Nurse Mary says there's no knowing how chemo is going to affect me so she strongly recommends that I do not drive myself that day. Which means I will need someone to drop me off in the morning and then someone to pick me up in the afternoon. Kit said she's going to check her calendar. She might be able to do the morning and maybe my HHAT guys at QED can come grab me at 4:30. I'll have to contact H and see what he can line up for me. Actually, I think he and Jer are coming over to play some cards with me on Thursday so I can hit him up then for his transport services.

I've been continuing to experiment with 'eating'. I got an awful scratch the other day that had me in a coughing fit that simply would not stop. I couldn't tell if the scratch was in my throat or my lungs though! So first I dropped two full saline bullets into my lungs to see if that helped. Yeah, no. Didn't help. So then I stripped down naked, laid down in the bathtub and poured water into my mouth. Well, I managed to drink some but I also ended up with water in my lungs. So instead of choking from a scratch, I was choking on water. Not good. I wasn't sure what happened. Was it the water leaking out of the sides of my mouth that accidentally went down into my stoma? Is the hole in my neck still open and leaking into my stoma? Is the hole in my throat where the speaking valve was still open and leaking into my lungs? Babydoll was over later that night. I decided to repeat the experiment for him and have him watch and tell me what was going on. The only difference this time was that I was much neater when I drank and none of it spilled out the sides of my mouth. I also did not choke and baby doll said there was no water leaking from where the hole in my neck used to be. Okay, so problem solved. I must have just been too messy that first time. Alas......I tested again tonight. Shopping parched me! So, I sat at my kitchen table, opened a bottle of water, leaned way, way back in the chair, and started 'drinking'. OMG. Ice cold water flowing down my throat felt soooo good. I managed to down half the bottle. Unfortunately, I then started choking again. I think it's the hole in my throat where the speaking valve was. If the valve was still in place, it's a one way valve and it wouldn't let the water go through to my lungs. Since it's currently missing, there is simply a hole there and it would seem that it's a large enough hole that some water can get through to my lungs. I didn't mind a little choking though. It was a price worth paying to drink half a bottle of ice cold water. Ahhhhhhhhhhhh.

My other experiment was a lollipop. I bought some treat bags for Leila, Mason, and Ayanna because baby doll and I will be heading to Liverpool on 10/26 to visit Sam, Mark, and the ankle biters. I thought it would be fun to buy trick or treat bags and put a bunch of candy in them to kick off Halloween for my friends. Handling all that candy started up a major craving in me though. So I decided since I can swallow, maybe I can suck on a hard candy. A lollipop seemed perfect because it's on a stick so I can control it not falling into my throat by accident. Not that I can choke but I imagine it would still be uncomfortable. My first try was a tootsie roll pop. Turns out I can't open my mouth far enough to fit one in!! Luckily there were these small, flat, Jolly Rancher pops. I ate two of them. It's been over a year since the last radiation treatments ended and it would seem that I still don't have sweet taste buds back. But I could indeed taste that one of them was watermelon and the other one was green apple. And I even crunched the last of the green apple when it got near the end. It felt so good to chew something!! It's the little things in life that thrill.

Okay, this blog is ridiculously long. That's what happens when I don't write for a few days. I save up all sorts of adventures to share. I'm going to end this blog by entertaining you with some random pics from the past week.

 This is one of the cute hats I bought at the sale today. Am I styling or what??

 This is Kit and I standing in line, waiting for the sale to open.

 Baby doll and I won a ton of tickets at the midway in NF so we got to pick out some prizes. I got a pink fuzzy hat so I then made him get a blue fuzzy hat to match. He's such a good sport!!

Baby doll managed to catch a rainbow at NF. I didn't walk down there with him. The mist was awful! He was only gone about 30 minutes and by the time he got back to where I had planted myself, he was soaked!!

 Baby doll with the Falls behind him.

 Me and baby doll in front of the Sky Wheel.

 Baby doll at dino golf. I kicked his ass the first game. I think he then kicked my ass the next two games we played. I should have left on the high note!

 Me and baby doll with the Falls in the background. He's always so worried about getting the picture that he forgets to smile. He needs to put ME in charge of this picture taking business.

 A couple of nice pics that baby doll took.

There were massage chairs in the middle of the outlet mall so I dropped in some money and had baby doll try them out. This series of pics kills me. I had tears running down my face when this was actually happening, I was laughing so hard. He looks so happy to start, then he starts looking worried, and then he finally looks distinctly uncomfortable. I'm glad I made HIM try it!

And I'll end this with a game. I do a lot of people watching while I'm at the hospital. This young lady stepped up to the counter in one of the numerous waiting rooms that I've been sitting in as of late. I swear to god she was not wearing anything under that shirt. What do you think? Any chance there were some micro shorts on underneath that thing??

Saturday, October 12, 2013

October 12

My mini vacay to Niagara Falls was fantastic!! It turns out I DID have something on my bucket list. I've been to the Falls a dozen times now and it's always to see the Falls. Yes, they're wondrous, a true miracle of nature, a sight to behold, blah, blah, blah. What I have always wanted to do was to run around and take part in all the silly commercial crap that they have going on, on the Canadian side of the Falls. And my babydoll helped make this dream come true this past week. We went in 3 different haunted houses, two mazes, Ripleys, a 4D theater, a 6D theater, we spent hours in the midway playing whack a mole, and skiball and Deal or No Deal, we played 3 round of putt putt, and rode the skywheel twice. It was fabulous! I had such an absolute blast!!

We also went to a bar and I had four, yes four, alcoholic beverages. I gotta tell you, I barely caught a buzz. I think the Roxicet has me spoiled. Who needs alcohol when you can take prescription pain meds? Meanwhile babydoll had two beers, and two drinks in an effort to keep up with me. He got a little silly. And man, can that man snore!

On the bright side, now that I survived putting alcohol in my PEG, I've been experimenting with milkshakes, and iced coffees, and all sorts of stuff. I came back from Canada 3 pounds heavier! Yay!

Okay, so back to the medical stuff. The port placement sucked. I had no idea that they run a catheter from the port to the vein right above your heart! I had a mini meltdown in the office! Nobody mentioned poking anything into my heart, for crying out loud! Ah well, I eventually calmed down again. People get these things put in every day and it turns out while I thought it was my decision to have the thing places, it's actually kind of mandatory. The chemo treatment burns the heck out of your veins and permanently damages them. So, it's done. The nice nurse Connie held my hand through most of the procedure. WE weren't very far into things when I let it be known that I needed to have my hand held. She moved her monitor so that she could work with her right hand and hold my hand with her left. It was very sweet of her.

I got back home and did not have time for a nap before I was back at Strong getting my new Silence of the Lambs face mask made and a CT contrast scan done. Dr. S and resident Mike stopped by to say 'hi'. Dr. S introduced himself to Scott and then sat down next to him and asked if he had any questions about what was going on. Dr. S commented that he was surprised that I had shown up to my first appointment alone. What can I say? I've already done the radiation thing. Resident Mike gave me the low down on all the awfulness of having radiation done a second time. What more is there? Dr. S also checked the red angry bump on the side of my neck. It's bigger. Dr. M said that one of the margins on the tumor that was so small was because it was right up against the skin of my neck so they couldn't go any farther than the skin. I'm wondering if that was on the right side of my neck where this lovely, large, red bump is now growing. Hopefully, as Dr. M said, the radiation will take care of it.

Chemo and radiation start on 10/21. Next week is jam packed with all sorts of appointments. On Monday I have a 1:30 to get the port site checked to make sure it went okay. At 2:30 I meed with Dr, Kim to talk about the chemo. And at some point during the day I have to buzz over to Clinton and donate blood so that Dr. K can check my thyroid levels and discuss with me on Friday.

Meanwhile I have a new bane to my existence. Her name is Cindy and she's Dr. S's secretary. She keeps making these random appointments for me! First she tried scheduling me for the mask fitting at the same time as the port placement. I guess she called and tried to get my port placement appointment bumped so that her mask appointment would work. Thankfully the port placement people told her to stick it where the sun don't shine. Now she called babydoll's cell phone at 4:00 yesterday as we were driving home from the Falls. She said Dr. S wants me to get checked out by a dentist before treatments start, after all (last time I talked to him he wasn't sure this was going to be necessary). So, she scheduled me for a Wed. appt. with their hospital dentist. A) She scheduled it for the same exact time that Dr. S wants me to go get a hearing test done before treatments start. B) I have no desire to see their dentist. I'd rather call my own dentist to see if they can get me in some time next week. Although my availability is hugely limited. Anyway, this Cindy chick gets all sniffy because first of all I don't have my calendar in front of me to let her know if the appt she set up works or not and then when I said I'd prefer to see my own dentist, the temperature on the phone dropped a good 10 degrees! Whatever. She can go play god with some other patient.

So, that's about it on the medical front. Yesterday I woke up and my right eye was half swollen shut. I couldn't put my contacts in or my makeup on. Not sure what's up with that. It's gone down most of the way as of today. Maybe allergies? Today I'm headed to a birthday party for a 3 year old. I was up until 3:00 AM this morning making meatballs, chocolate caramel pies, and some stupid turkey cookies. OMG. Those things were a pain in the ass. There isn't even any cooking involved either. They're simply assembly with a little creative flair. And seeing as how I have zero creativity, they came out pretty sloppy looking. Hopefully my kick ass meatballs make up for it. :-)

Monday, October 7, 2013

October 7

Okay, I have 20 minutes to kill before Kit arrives to take me to appointment number one today. This morning I won't be fully knocked out but will be drugged enough to be in the "twilight" is how VNS Stephanie put it,  and they will be implanting the port in my right shoulder for the chemo treatments. Stephanie also warned me that I was going to be very sore and will likely have a difficult time lifting that arm for the next week. Yeah great, just in time for my vacation which starts tomorrow. Figures.

At 2:30 today I have an appointment to get fitted for my new radiation mask. I'm not happy having another appointment after an appointment where they will be partially knocking me out. All I really wanted, was to come home after that one and sleep it off so that I'd be raring to go at 8:00 tomorrow morning. Tomorrow's plan is to spend the day shopping at the Niagara Falls Outlet Mall. I'm gonna need some energy for that major of a retail therapy outing!! But whatever, radiation doc didn't want to wait until next week to do the fitting. Now that Dr. M said all systems 'go', everyone is in a huge ass hurry to get things underway.

At least I had a peaceful weekend. Especially after those 5 doctor's appointments in 2 days. That was rough! But I am fully recharged. For now.

My extra cans of feed were delivered over the weekend so I am now 'eating' 7 cans a day. Plus I'm back to making peanut butter and banana smoothies although those things are seriously hard to inject into my PEG!! I added a ton of extra milk to thin it down and it's still really hard. At least it's going in though. I've started weighing myself every morning again because my weight is suddenly dropping like a stone. I have no idea why. I haven't changed anything. I was back down to 109 yesterday which is the lowest my weight has gotten, I don't want to see the scale say 108 so I'm eating like every 3 hours. Unfortunately today messes that up because I'm not allowed any food or drink 6 hours before this procedure. I'm gonna be starving by the time I get home which I'm guessing will be around 10:30.

I was doing a little internet shopping yesterday on a medical website. I wanted to order a second one of those hard plastic shower shields and I had a 10% off coupon so I figured I would browse around and see what else I could find. They had my sucker sponges and they were $5 cheaper for the 250 ct. case than Amazon! I also found the tinkertoy that Dr. L added to the end of my PEG. That stupid, clumsy valve sells for $199!! Can you believe that?? Meanwhile, that thing was driving me nuts. It's so big I can't comfortably tuck it into my pants, and it makes my shirts tent out huge. So, I had babydoll help me remove it again. The tab on my stopper hasn't totally ripped off, it just started to rip so I decided that I'll use it until it totally rips and is unusable. At that point I'll put the huge ass tinkertoy back on and deal with it. Of course now that I know how much it costs, I'm treating that baby like it's made out of gold!

I beefed up my lary bag a little more. I have now added powdered milk and a quart size drinking bottle for mixing. That way when I'm out and about and absolutely starving, Kit just needs to find some water instead of actual milk. :-) Here's an inventory list of everything that is now kept in my 'go' bag. You can imagine how much this darned bag weighs.

Lary Bag
 Deck of cards
 Protein packets
 Sucker sponges
 Bottled water
 Hydrogen Peroxide
 Tupperware containers
 Posey Holder
 Saline bullets
 Cleaning Brush
 Assorted bandages
 Soaking tupperware
 Speaker stand
 Charger cord
 Extra OSL tube
 Powdered milk
 Quart size bottle

I was e-mailing with my friend Renee over the weekend. She was telling me some of the side effects that she experienced during her chemo treatments. Hair loss was definitely one of them. And not just on her head. She said she lost her eyebrows, pubic hair, and underarm hair as well. I won't be sad to see the underarm hair go. I have lost so much weight that my armpits are too concave for my razor to get into and shave. You'd laugh if you could see the contortions I put myself through in the shower trying to make a flatter surface in my armpits so that shaving is effective. It's ridiculous!

Okay, Kit should be here any second. I gotta fly. Tomorrow my man and I are leaving the country so I don't know how much blogging will get done while I'm away. If I don't talk to any of you, have a fantastic week! Enjoy the color of the leaves, the crisp air, apple picking, pumpkin carving, woodsmoke............this is my fave season!!

Friday, October 4, 2013

October 4

October 4th?? Babydoll and I have been dating for 9 months as of today. It's been both the best and worst 9 months of my life. Thank goodness he's been there to balance out all the crap that's been happening! There were a couple of biddies in the waiting room yesterday and they were oohing and ahhing over my boogie board so I was letting them play with it. One of them was savvy enough that she's on Amazon all the time so she told her friend that she would order her one. The friend made some pithy remark about how people are in certain places at certain times for a reason. Meaning I was meant to be in the waiting room with them so that they could discover the handiness of a boogie board. I don't usually subscribe to that philosophy but in the case of meeting Scott and having him so quickly become such a huge, meaningful, and wonderful part of my life, well........maybe I buy into it just a little bit.

So I ran out of pain meds at noon on Wednesday and discovered that my insurance wouldn't pay for the refill until Thursday. No biggie. I figured I would just stop by and grab it after my appointments yesterday. Well. I underestimated how much I'm liking my Roxicet. I did NOT have a very good night and at 8:00 yesterday morning I was online Googling the Strong pharmacy hours. Turns out they open at 8:30 in the morning. I was in my car at 8:22 and was injecting meds into my stomach in my car at 9:02 yesterday morning. I feel like I should be ashamed to be admitting such a thing but whatever. I recently started watching Breaking Bad and all I can say is hey, at least I'm not out cooking meth!!

Speaking of Breaking Bad, what an awesome yet disturbing show! For those of you not familiar with it, this school teacher, specifically a chemistry teacher, finds out he has incurable lung cancer and not long to live. In an effort to provide for his family after he's gone, he gets it into his head to cook meth and sell it. Man, the trouble this guy gets into. And the format of the show is seriously cool. Not every episode but some of the episodes start with some crazy scene, like Walt, the teacher, walking away from a blown up building with his head shaved, and a bloody bag full of cash in his hand. Then they cut back to where the storyline left off and they slowly build back up to that particular scene by the end of the episode. It's crazy to see exactly how he got into that messed up situation! I love it! I'm also finding the show really disturbing. I had my appointment with the chemo doc on Wednesday. Wednesday night I came home and I watched an episode where Walt meets with a chemo doc and hearing the chemo doc talk about all the potential side effects, sometimes word for word what my chemo doc told me, was freaking me out!! Then in the next episode, Jesse, the kid who helps Walt cook the meth, tells Walt that his aunt had chemo and that she said putting an ice pack on her head during the treatment helped with the hair loss. Do you think that's true?!? Should I go buy some ice packs right now!? And Walt's chemo doc told him that he could experience nausea but they had meds that usually keep it under control. That's exactly what my doc said as well. Then, the next thing you know, Walt is in the bathroom at school every day puking his guts out! I was SO bummed to see that! So, do the meds not work or are they just trying to dramatize things for a TV show?? Ugh. I don't know if I should continue watching the damn show. I just finished season 1 last night.

Okay, I'm going to tell you some of the sundry stuff that I didn't get to the last time I posted and then I'm going to summarize my three doctors appointments for you.

First of all, I sneezed for the first time in my new body. I had reported that vomiting is much easier with my new getup, well let me tell you, sneezing SUCKS. It's like this whole body glitch that happens but I don't have a nose to expel air through forcibly so there's no real closure to the sneeze. I didn't feel relieved afterwards. And I'm thinking this might be why I sneezed 9 times in a row instead of just 2-3. It was messed up to say the least. I always thought sneezes originated in the nose. It would seem that's not always the case.

I did, indeed, do a shot of Bacardi rum the other night. It was not that great of an experience. I ended up with a really weird aftertaste tickling the back of my throat and within 20 minutes of injecting the shot into my stomach, I was fast asleep. At least now I know what the cure is for those nights when I'm up at some crazy hour and can't fall back asleep. Like Tuesday night, I was up at 1:00 am and decided to clean out all my kitchen drawers. I then went back to bed at 2:15. What the hell is up with that?

I got my first 'big' bill from all this medical crap. $550. Bleah. I feel like I should start an Excel spreadsheet and verify that my insurance company only makes me pay up to $4,000 out of pocket for the medical expenses. It always feels like I pay a heck of a lot more than that.

The poker boys are going to be bummed. I believe I have finally decided to turn my spare bedroom into a dressing room. It just seems like such a fun project to map out! I can have a wall of scarves, a wall of hats, and a wall of purses. I can do a shoe cubicle right in the middle of the room. I can pick up a cute little vanity where I can mess with hair, makeup, jewelry, etc. I could totally make it a girly girl room!

I have been a cooking maniac for my man. This week was an appetizer recipe for crab cups that came out super yummy and a main meal recipe for champagne shrimp and pasta. It was good but nothing to rave about according to babydoll. The winner of the week, and probably the entire year, was last night. I found a recipe for those chocolate lava cakes. The recipe is kind of crazy. It calls for 3 eggs and 6 egg yolks! Yikes! But I made them last night and I swear babydoll almost fell into a coma of delight. He could not stop talking about how good they turned out. The entire time he was eating it he kept sighing and mmming and I don't think he even realized he was doing it! So, that recipe is not only a keeper but I'm going to have to build a shrine for the damned thing. :-)

Did I mention that babydoll signed me up for a football pool? Yeah me, the chick who eschews all things sports related. Well let me tell you, I've been totally sucked in. I spend like an hour every week going through, doing research, and trying to figure out what teams to pick. It's ridiculous! And I would like Sam and Kunkel to know that I pick Dallas and Seattle every single week in deference to their hubbies passions. No clue why, it just feels right.

Okay, enough rambling about the fluffy stuff. Time to get to the meat of all my appointments yesterday. I went to my 1:00 with Dr. M with two pages of questions! So here are some highlights from that:

Dr. M doesn't know what to make of the weird lump on my neck that Dr. S pointed out. He said it doesn't feel like a tumor but even if it is, he's going to let the radiation treatments take care of it. Which by the way, he said that he's going to let Dr. K and Dr. S know that treatments can start immediately. He feels that I'm healed up enough. So for the weird bump, he said if it ends up getting bigger or becomes bothersome, to let him know and they can reevaluate whether to remove/biopsy it.

Dr. M approved me getting a port placed for the chemo treatments so long as it's on my right side away from my pec surgery. I will be getting the port placed on Monday. And I was just interrupted typing this blog by a phone call from the radiation doc's secretary. They want to fit me for my radiation mask at 8:00 on Monday. I can't be in two places at once for crying out loud, don't they have access to all of my appointments?? I just sent a note to babydoll asking him to call them back and reschedule that one. Sheesh.

Dr. M and I got into it a little bit about me not having all that interesting info about my cancer and it's progress. He claims he told me about it after the surgery. Well great, I don't even remember the first day and a half after the first surgery, is that when he imparted that info?? He said it doesn't change anything that we're doing anyways so he doesn't see why it matters. That pissed me off a little. It matters because I'd like to know the deets of my health, thank you very much. Anyway, supposedly there wasn't anything else I needed to know. I asked him what my actual survival rate is estimated at with the hot mess that is what I call a body nowadays. I guessed 25%, he said the honest number is between 20-30% chance of survival. He, of course, followed that up with how hopeful he is and all his normal glass half full blah, blah, blah. I told him I'd let him be the hopeful one while I was the realistic one who has shit I need to get done and it's good to know I'm likely working with a shortened timeline. He said that he's had patients in my same sitch that have lived another 10-20 years and then others who have checked out within 6 months. So, I think I'm going to go with a year and plan my "shit" with that schedule in mind. This means I really need to get moving on this damn book you peeps want me to write! :-)

I expressed my concern about my shrinking stoma. Dr. M had told me I could take my OSL out during the day and only wear it at night. I told him that I sometimes take it out for an hour or two but that's it because I can visibly see my stoma shrinking right before my eyes. A few weeks ago the OSL went in with some room to spare around all sides, now I have to use a little force in order to get it to fit back into the hole. It turns out this is normally and that the stoma should eventually stabilize. It takes anywhere from 3 months to a year to stabilize. JoAnn showed me how to use some pincher tools to fold the OSL tube in half and then in quarters to make it easier to slide into the stoma rather than me using force to push it in. So I guess this happens to everyone. I asked if they ever have to go in and re-open a stoma. They said rarely but yes. Yeesh. I'll be having nightmares about that now, thank you.

The fact that vomit came out of both my mouth and my stoma last weekend was probably due to both the hole in my throat where the speaking valve is missing as well as the fact that there's still a small hole between my mouth and my neck, according to Dr. M. He was more concerned that I was vomiting. I told him that I made the mistake of taking all my vitamins on an empty stomach and that I would not be repeating that again. Ever.

I complained about looking like a caricature with my huge head and tiny body. I thought the chipmunk cheeks would be gone within a month or two of the original surgery. No clue where I got that idea from, I guess it's likely to take a year for my chipmunk cheeks to go down. It's kind of like that bullfrog thing that I had going on last year with all the fluid collecting on my neck under my chin.

So, that was about that for my 1:00 appointment. There were a few other questions tossed in there but nothing really exciting to report. Kit and I then moved on to my 2:00 appointment.

My 2:00 appointment was with Dr. L. She's the one who does the PEG replacements. She got the measurements from my PEG and now has the low profile PEG on order for me from Upstate. I guess it will get delivered to my house at which point I bring it in and she will place it for me. It seems like an easy and painless procedure. She sucks the water out of the little balloon that is currently holding the PEG inside my stomach, slips the old PEG out, slips the new one in, and fills the new balloon with water to hold it there. I showed her my poor little tab that is starting to rip and my lovely job with electrical tape. She ended up adding a new 'end' to my PEG to bypass the ripped stopper. It's kind of huge. I feel like a human tinker toy. Luckily, it's only until 10/16 which is when I'm scheduled to get the low profile PEG placed. Which by the way is called a Mic-Key. Here's pic of my tinker toy:

And not for nothing, but I have it resting on my leg. Doesn't it look like it's resting on my arm in this picture?? That's how damn skinny my stupid chicken bone legs are! Speaking of which, I weighed in on the doc's scale at 115 on Wednesday. Yesterday it said 106. The nurse and I both freaked out. So she made me get off and reset the scale. I then weighed in at 111. She was still suspicious so we went down the hall to a different scale. 111 again. 4 pounds in one day?? WTH? And I was wearing the same shoes as the day before. And jeans and a sweater instead of jeans and a shirt which should have been heavier! Whatever. One of the other questions on my list for the doc was whether they bumped my script up yet to 7 cans. JoAnn verified that they had and she called Upstate while I was there. They said they will make a second delivery of the extra cans next week. Phew! Hopefully I can start putting some meat on these bones!!

After that I had a 3:00 appointment to get an ultra sound done on my legs so they could rule out blood clots for my swollen ankles. Turns out it takes 45 minutes to accomplish this. Seems a bit excessive but whatever. Meanwhile my PEG was cramping like crazy because I was starving at this point. I was running WAY behind schedule when Kit cam to pick me up for my day of fun and I only got in about half of my noon feed before we had to rush out the door. Anywho, Kit ran to the cafeteria to get some milk and then helped me 'eat' a CBD while the ultrasound was going on. The tech chick that was doing the ultrasound was super sweet and had no problem pausing for 5-10 minutes so that I could inject some food into my cramping belly. Thank goodness for Kit! I'd be a miserable wreck without that woman coaching me through these marathon days of doctor appointments! I like that they try to schedule them consecutively to save me trips to the hospital but man, it's seriously exhausting spending 3-4 hours running from one doctor to the next.

So those are my stories for now. For my birthday, babydoll had his coworker and father install a humidifier on my furnace. They were here this morning and just left 20 minutes ago. Stephanie from VNS will be here around 11:30 this morning for one last visit and then I'm free the rest of the day until babydoll's arrival at 6:30. Phew! Thank goodness the weekend is here. I'm in need of some down time! I hope everyone is enjoying the more temperate weather we've been having.....have a wonderful weekend!

Wednesday, October 2, 2013

October 2

Ladies and gentlemen, boys and girls, step right up and hear the tales of a real live lary! Admission is only a nickel. We have tales to make you laugh, make you cry, and to mystify! Talk about some bang for your buck! (Or coin as it were....)

Okay, lots of stuff to tell you so sit back and hold tight.

Let's start with the two appointments I just had since they're fresh in my mind. I met with Dr. K at 2:00. He's the chemo doc. Actually, I met with his resident, Michiko, for the most part and then spent 15 minutes with Dr. K. So, here's the skinny on the chemo treatments:

- The treatments will be once a week for as long as I have radiation. The point of the chemo is that it's a low dose sensitizing treatment that will allow the radiation to be more effective. Each treatment will take ~3.5 hours. Only 45 minutes of this is the actual chemo, the rest is them rehydrating my body.

- Dr. K mentioned that it's possible to put a port in place for the infusions. I told him this would be wonderful since my tiny veins cause getting IV's put in to be so traumatic. He wants to check with Dr. M to make sure he's not going to mess anything up with a port since I had a pec flap done on my left side. He will see Dr. M at the Thursday cancer board meeting tomorrow night.

- Dr. K said they do weekly blood tests to monitor what the chemo is doing to my blood. If my white cell count gets too low, I'm more susceptible to infections, if my red cells get too low, I could become anemic. If my platelets get too low, I could cut myself and bleed out.

- The biggest side effect they seemed concerned about is potential hearing loss (those ASL classes are looking better and better!). There are other potential side effects such as tingling, numbness, nausea, hair loss, constipation, fatigue, diarrhea, etc. But he said half of those are really unlikely.

- He's also concerned about my swollen ankles. He's going to schedule me to have a sonogram done just to rule out blood clots and he told me to cease and desist with the added salt that the visiting nurse had suggested. Michiko recommended that I pick up some compression stockings at CVS. She thinks they'll help.

- He also had me stop at the lab at the end of the day to donate yet more blood.

I think that was it for those peeps. Next up was Mike, the resident for the radiation doctor, Dr. S. I think Mike might be even cuter than Dr. Brendan! Ooh la la! So again, I spent a good hour with Mike. He had some VERY interesting information for me. Did you know that there was less that a 1mm margin on 3 sides of the tumor?? I'm pretty sure Dr. M merely stated that the margins looked good. Did you know that they removed four more lymph nodes while they were in there and that one of them was not only cancerous but that the cancer had already spread to outside the lymph node?? Yeah, me neither. And did you know that the cancer showed that it was following nerve paths that were leading outside of the tumor?? Uh huh. Yep, I didn't know that either. Dr. M and I are going to be having a little talk tomorrow. Being my half glass full surgeon is one thing, not sharing deets with me is a whole other matter.

Anyway, skinny on radiation treatments:

- Last time I was zapped with 60 GRAY of radiation. Whatever the hell that means. This time they want to zap me with 66 GRAY. The downside is that they are re-zapping tissue that has already been radiated. Although Mike pointed out that a lot of the tissue that got radiated the first time around was probably removed during my two flap surgeries. Yet another doc who tries to look on the bright side of things. Yeesh. Anywho, because this is the second go around, there's a 25-50% chance of some permanent damage and severe side effects. Mike mostly talked about how the radiation could kill some of my flesh which would lead to more flaps and skin grafts (Yay!........not) and there could be some bone damage to my jaw as well.

- Mike tried reassuring me that he wasn't trying to scare me out of treatments but he wanted me to have full disclosure. I reassured him that no matter what came out of his mouth, I was going to have the treatments done and that I appreciated any and all info he could give me anyway. He said that he likes the way I roll.

- He was asking me about my eating habits. I told him about possibly getting bumped up to 7 cans a day so that I can gain 10-20 pounds. He looked dumbfounded. You could see that he so badly wanted to make an exclamation when I bitched that I was too skinny but he managed to control himself. Ha! Good for him for not mouthing out stupid stereotypes.

- He also asked me if I was still drinking alcohol. I wrote "I wish!" on my Boogie Board. He said that my G tube can certainly accept alcohol. He immediately stated that he was not recommending that I "drink" alcohol. He was simply stating the fact that there was nothing to stop me from doing so. Hmmmmm........

So, Dr. S finally came in. He looked me over. He found a weird lump on my neck and told me to make sure to show it to Dr. M tomorrow. Kind of looks like an out of control spider bite. Asked if I had any questions, told me how sorry he was that I've had such a rough time with things but that we would work together to make sure the cancer stays gone this time. And then it was off to the blood lab I go.

All in all, I'm suddenly not feeling so great about my chances of surviving this. Although I wasn't feeling great about them before either. Based on that, when all the docs were talking about setting up oodles of appointments next week, I very firmly told them that I would be out of town Tuesday thru Friday. If this is going to be my last chance at taking a vacation then I'm damn well going to take it and I don't give a rat's ass about postponing treatments for one more week.

After the lab work I headed down to the pharmacy. I'm really hating that place. First of all, the zinc and thiamine prescriptions STILL were not filled. It's been a fucking week for crying out loud! The kid at the counter told me to have a seat, they'd be ready in 10-15 minutes. I told him no. I was NOT waiting. I told him I had another appointment tomorrow and asked if they would be ready at that time with NO waiting. He assured me that they would be. Plus I wanted to pick up my Roxicet but he said my insurance won't pay for the prescription to be filled until tomorrow. OMFG! So, I'm now taking my liquid Tylenol and now that I know alcohol in my G tube is possible, I'm thinking about doing a shot of Grey Goose in place of the Roxicet. We'll see if I actually get up the nerve to try it.

So those were my appointments today. Let's see what else has been going on in the world of Q....

My road rash FINALLY stopped bleeding and is now in full on scabby healing mode. Phew!

I finally started exploring the Webwhispers site for information. It turns out there is an International Laryngectomee Conference once a year. Last year it was in Montana, this year it was in Spokane, WA, next year it's in Buffalo, NY! How awesome it that?? No clue what the conference is about but I have from now until June to figure out if I want to go.

Some chick named Lynn sent me an e-mail today. She's 45 yrs. old and lives here in Rochester (Penfield). She's currently scheduling having a laryngectomy and wanted to know if she could e-mail me questions. I told her to feel free but that I'm pretty lost myself. I told her I would love to have a partner for this adventure though!

I got an e-mail from priceline today telling me to check in for my flight to San Juan on Saturday. :-(

The hospital gave me a couple of stoma covers for the shower. They're basically sheets of plastic with velcro ties. I wasn't digging them. I surfed the web and ordered one that's made of a stiffer plastic to the tune of $30. It arrived today. I love it! The harder plastic digs into my shoulders a little and due to my uneven neck surface, I had to use an OSL holder as a buffer between it and my neck. But all in all, it worked wonderfully well! I might purchase a second one just to make sure I have a back up!!

Yesterday I received a wonderfully supportive card from my Aunt Helen. Thanks for the boost Aunt Helen! Those are always appreciated!!

I sent Kit an e-mail today letting her know that I am now driving myself so she doesn't need to take me to my 2 (possibly 3) appointments tomorrow. She told me that she wants to take me anyway. She wants to see my new "do" in person, she wants to continue following the Q adventure in real time, and seeing Dr. M again is a bonus. :-) Hearing this excited me because other than my baby doll, I feel the most comfortable hanging with Kit. She acts like there is absolutely nothing different about me which thrills me to no end! Plus, she was never really quiet but she wasn't hugely talkative either. Now that she has to carry a majority of the conversation, I'm learning all sorts of things about her. And can I tell you, I actually like her even more as a person now than I ever did! I didn't even know that was possible!!

Some of the scabbing has started to peel off of my neck. There seems to be more stitches that need to be snipped out. I asked Dr. Gonzo (baby doll) if he could do it but he took one look at them and said that it was a Dr. M job at my appointment tomorrow. No worries. I've added it to the list.

I tried using Sam's birthday present yesterday. I plugged the paraffin heater in at 6:30 yesterday morning. At 12:30 the wax was still only half melted. According to the directions, it should only take 90 minutes to melt. So, it's back to Amazon for that unit. I've asked them to send me a replacement though because I really want to try this thing out!

So, I've torn the tab on the stopper for my PEG. I've rigged it with a bunch of electrical tape for now but it's still leaking. I gotta show it to Dr. M tomorrow and hope that they'll replace my PEG sooner than 11/15 which would be the 3 month mark that they told me about. Grrrrr.

Okay, I still have a list of other stuff I want to comment on but I'm wiped out and I have two (maybe 3) more big appointments tomorrow. So I'm out of here for now. See ya!