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??
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!!
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!
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