Saturday, December 28, 2013

December 28

Okay, I have a few updates.

I had an appointment with Dr. Kim, the chemo doc, last Monday. He just wanted to do one last set of blood work to make sure that I made it through the chemo treatments okay. He said everything looks good except my thyroid levels. I told him that my PCP and I are working to find the right dose of meds to get that under control.

Speaking of which, Dr. Kranz went ahead and bumped my dose from 175 back up to 200 because she said my levels are still somewhat low. I now need to stay on this dose for 8 weeks and then we'll re-check.

Anyway, back to Dr. Kim. He asked me if I wanted my port taken out and I said "hell, yes!". He looked a bit surprised. I told him it was going to look awful when I wear my bikini this July. That made him laugh. He then said that people normally choose to leave them in for a while because if the cancer comes back, it will need to get placed again. <<Oh, well when you put it THAT way....>>. He then said a second placement would be even trickier on me since they can only use the right side of my chest. And he said they have to place it somewhere different the second time because all of the veins they used this time would be compromised. <<OOOOH, I didn't think of that either....>>. So I told him to feel free to leave it in as long as he wanted to after all. Getting this thing put in the first time was traumatic enough. I can live with an alien bump sticking out of my chest for a good long time. He said we should at least leave it in until after the PET scan in 3 months.

So, I'm now done with him. No more appointments as far as I know.

I then had an appointment with Dr. Miller yesterday to get the speech prosthesis put in place. It wasn't nearly as bad as he made it out to be. It hurt a little but nothing too awful. And I think it was the tools that he was using, touching the side of my stoma that hurt, not the actual insertion itself. After he got the thing installed he plugged up my stoma and told me to say 'hello'. I got all excited for a brief second thinking I would talk. Yeah, no. Nothing happened. He said it's because of the temporary plastic tube that Dr. V sewed onto the back of my tongue. He said I wasn't going to be able to speak until it got removed. So, he is now working on scheduling me a surgery appointment so that he can take it out of there. He's hoping to get me in before I go back to work on 1/13. I mentioned that I hadn't heard about the Botox appointment yet either. He said that that particular department is notorious for not following up with appointments like they're supposed to. He said that he'd call them again and light a fire under their ass.

Meanwhile, I complained to him about the uptick in my aspirating. He said the speech prosthesis is now plugging the hole that was leaking saliva so that problem should go away. Oh boy, was he right! I was actually able to sleep last night laying down flat on my back AND I could roll over onto my side and I didn't choke. It was heaven! Best night of sleep I've gotten in weeks!

I also told him that a new hole has opened up on the outside of my neck 3-4 days ago and is dripping saliva down the front of my shirts. I had to start wrapping my neck in bandages again. I hate when I take a step backwards in my healing! He took a look and confirmed that a hole has opened up right under my chin. He's baffled as to why it suddenly decided to do that. On top of that, he said it's also infected. So as soon as I'm done posting this, I'm off to Wegman's to pick up a prescription for antibiotics. <sigh>

So that was all the excitement with Dr. Miller. He's scheduling surgery for me, scheduling Botox for me, and I see him for another checkup appointment on 1/10.

That's all the news on the health side of things. On the fun side of things.........


My crazy dreams did come true! At least as far as adopting the two new furballs. All day long yesterday all you heard was the scampering of little feet as Ethan, Sterling, and Itty all chased each other all over the house. I was so happy I teared up a little. Itty has wanted somebody to play with for so long it's not even funny and now he suddenly has two new friends who LOVE playing with him. Taking in those two is the best decision I've made in a very long time.

Christmas was wonderful. I was very spoiled this year and received a lot of kitchen stuff which I was really happy about. Baby doll and his daughter, Jessica, came over early Christmas afternoon and we did our gift exchange. Then we headed to his niece's house to do the family gift exchange. It totally hadn't occurred to me that we were going to the house where I've brought a baked good every time I've shown up at the door until Christmas morning. So I donned the new, gorgeous apron that Sam, Mark, and the kids got me for Christmas and hit the kitchen. I then went a little crazy. I made Nanaimo bars, peanut butter bars, and frosted brownies. I also made pecan pie bars but they weren't cool enough to cut by the time we were ready to go so they got left behind.

Jessica ended up making me a necklace for Christmas, much to my surprise. I thought that was very cool. I bought her some stuff. I had let her open one of her gifts early, when she was over to make gingerbread houses. I had bought her this box with a 3D tiger on the front of it and I filled it with a bunch of little treasures like a bottle of perfume, a $15 iTunes card, some crazy colored pencils, some stickers, etc. On Christmas I gave her a hoodie, the Nightmare Before Christmas blu-ray, and a silky pajama shorts set. There was a little bit of lace around the legs so it had a slightly sexy vibe to it but nothing too racy for a 14 year old, at least in my mind. When we dropped her back at home later that night she immediately went upstairs and put the pajamas on and modeled them for us. I think they were a hit. ;-)

That was about it for Christmas excitement. My friend Ted stopped by the other day and handed off three shoe boxes already filled with personal hygiene items. That was a huge help in my goal to have 25 shoe boxes filled, to donate to charity next Christmas. At this rate I might even exceed my goal! My friend Luke stopped over to say 'hi'. I haven't seen him in months so it was good to catch up. He even hung out long enough to meet baby doll when he got home from work. Baby doll will eventually meet everyone in my life. It's just taking a while. JBB bought her plane tickets and is coming to spend Martin Luther King weekend with me. THAT's going to be a blast! And Sammy is supposed to be zeroing in on a date to come see me soon too. OH! And my friend Andy is looking at his schedule to see if he can fly in from Idaho some time in February to visit me. Which would be perfect timing. JT is supposed to be moving west by the end of February so if I can pull together one last poker game where both JT and Andy can attend, that would be the bomb!! You want to talk about a blowout bash....that poker game is going to be epic!

Baby doll and I went to see American Hustle last night. It was good. It moved a little slow in some places. I found myself dozing off a few times. That's probably because of those darned reclining seats they have in the theater now. Baby doll and I haven't been getting out much lately because he's been putting in some really long hours at work and I've been feeling under the weather more often than not lately. I told him that has to change. We need to start getting out more often before we fall into some stay at home rut. We celebrate our one year anniversary next Saturday. I think we're going to go bowling to celebrate. I suck at bowling. It should be an amusing outing. :-)

Okay, I'm off to get some antibiotics working in my system. I hope everyone had a wonderful Christmas and that you're all staying safe and warm through the holiday season. XXOO!

Friday, December 20, 2013

December 20

I was back at the vet this morning for a follow up appointment for the new furballs. Ethan gained a pound in a week! The vet said he doesn't even look like the same cat from last week. :-) So, they're both on antibiotics for one more week. They also both got a deworming pill today. Hopefully their lungs will be cleared up enough next week to get their booster vaccinations. Side note: There was an adorable, chubby, old, half blind bulldog named Stella in the waiting room when I was waiting to get called to pay my bill. She sat in the chair next to me and totally loved me up. What a cutie! Anyway, I caught Itty and Ethan playing the other morning. I had wildly hoped that two, new, young cats would give Itty someone new to play with. Daisy will play with him sometimes (she's a few years younger than Itty) but most of the time she just gets really irritated with him and he gets so bored in the winter when it's too cold to be outside hunting. So it looks like my crazy dreams might come true! Although Ethan only did the batting paws thing around the corner of the door for a short time before he leaped out, went skidding across the kitchen floor like a crazy cat, and ran into the family room for no apparent reason. Itty just kind of laid there stunned. Daisy isn't up to Itty's energy levels, Itty is probably not going to be able to keep up with Ethan's energy levels. Ha!

My new stove is bleeping awesome! I've been a cooking maniac with it for the past week. My one big worry was making chocolate chip cookies. I use the tollhouse recipe on the back of the chocolate chip bag but I use a Crisco bar instead of butter to make them puff up a little, and I make them big and undercook them a little so they're gooey-chewy. I had the whole thing down pat in the old oven. I would set if for 350 instead of 375 and cook the cookies for 9 minutes and they'd be perfect. Baby doll has been putting in 12-13 hour days, the poor guy, so I baked him cookies last night to perk him up. For once I was able to set my oven to 375 and I still baked for 9 minutes, and........success! They seem to have come out just as perfect! Woo hoo!

Baby doll and I did, indeed, install the second blu-ray and surround sound system on the TV over the weekend. Turns out the LG blu-ray didn't support the Amazon app either. WTH?! So, back to Sears I went. I've given up on the "home theater system" for now. I moved the Smart blu-ray player that was in the office out to the living room. I know it's compatible with the Amazon app and I can already access that app through the TV itself in the office so there was a duplication of technology in there anyway. I can now stream my Amazon movie/TV library in the living room. I'll pursue the whole home theater thing at some other point in time when I have more energy and I'm not so disgusted with the whole thing.

The boys were here for euchre lunch on Tuesday. Toby asked me when I was going to have a blowout with my new, fully stocked booze cart and my huge ass TV. I mentioned that we're thinking about a Super Bowl thing. Jer says he can't wait! So, I've started drumming up some interest already.

Paul and Justin were back for lunch on Thursday. I should say Justin was back, Paul didn't make it to the Tuesday lunch. Since there was just 3 of us, we tried playing Rummy. I was getting Knock Rummy and Rummy 500 rules confused though so we spent most of the time reading how to play. We'll be ready for the next time though. Paul brought me prezzies. Not sure what I did to deserve prezzies from him, we don't usually exchange. Then I opened them and understanding dawned. He bought me a ravioli maker and a pasta roller! How very cool! I'll be taking those gadgets for a test drive in the next couple of weeks. I can't wait to see what kinds of ravioli I can make! I remember a couple of years ago I had a pumpkin ravioli at Edibles in a brown sugar/maple cream sauce that was out of this world!

Speaking of prezzies, I have a ton under my tree from all my peeps that are waiting for Christmas to be opened but my friend Karen insisted I open hers early so I did. She bought me a pair of UGG slippers from Zappos. I went and peeked at the price which was seriously ridiculous for a pair of slippers but can I tell you, those things are like walking on clouds! I didn't know slippers could BE that comfortable and warm. Holy cow! Thank you Karen! I seriously LOVE them! Even baby doll commented last night that I must like them because every time he comes home I'm wearing them. :-)

I had an appointment on Monday with Nurse Claire. Just a one week follow up to make sure all was well. I made peanut butter bars for everyone because I think that was the favorite during me treatments. I handed them all off to Claire to distribute. She was excited. She commented that she was going to be everyone's fave person for the day!

So, I'm just sitting over here healing now, I guess. I went to Walmart the other day and was grumbling to myself because my right leg is always uncomfortable when I walk. 98% of the time I can ignore it but every once in a while it just bugs me. It's not painful, it just feels weird the entire length of my thigh where they took the piece of flesh for the graft that ended up failing anyway. That's what really cheese me off about it. I have this tight, uncomfortable feeling going on all the time and it was all for naught. That got me thinking about Dr. C and him talking about how downhill my quality of life was going to go if I had the surgery. I agree, things aren't beautiful but I'm glad I had the surgery. I'm glad I'm still able to bake cookies to cheer up my man. I'm glad that I'm still able to adopt two new kitties and give them a warm and loving home. I'm glad that I can still snuggle up on my couch (although it used to be my bed before the big TV purchase!) and enjoy some movies. Life is still good as far as I'm concerned. That being said, I'm still going to grumble a little bit.

So, I got the leg thing going on. Then there's this whole weight loss thing. I think I mentioned that my PEG leaks all the time because it's too big, so I'm forever staining my undershirts. What I don't think I mentioned was how hard it is to shave my armpits now. I've lost so much weight that they're too concave (?) to shave very well. Can you believe that?? At least my left arm I can twist in a certain way to make the flesh pop out a little and I can get a fairly clean shave over there but my right arm won't move that way. Whatever they severed in my neck when they dissected it won't allow me to move that arm in quite the same way. And the fact that I have more range of motion in my left arm than my right arm really baffles me because it's the left side of my chest where they bent the pec muscle in half and used it to re-build my throat. You'd think I'd have some limitations going on over there! Other grumblings, my jaw and cheek muscles on the right side of my face have been cramping lately. It would probably help if I did my exercises more often but I've been lazy again this week. The entire inside of my mouth feels like I drank acid. I actually wash skin down the drain sometimes when I use my water pic. Ewwww. I can't hold my head level for very long. I don't bother trying when I'm at home but I guess when I'm shopping I must try because by the time I get home, my neck is tired and aching from trying to keep it up for so long. It's no wonder the physical therapist said a lot of larys end up stooped and hunched over. I have NO flexibility in my neck. And I think I've mentioned what a PITA that is on a daily basis in the shower. I can't put my head directly under the spray because even with the trach shield, the contours of my neck are too lumpy to create a good seal with the shield. So, I have to lean WAAAAAY back to wash my hair since I can't tilt my head back. Like I said, I can barely keep it level, for crying out loud. And I can't wait for the damn port to come out. It's this huge lump on the right side of my dress and it's positioned so that when I dress in the morning, I keep accidentally scratching it. Can I tell you how unpleasant that is? And the water retention in my face is really out of control. Sometimes my eyes swell up so much I have a hard time seeing. That's not good. And for the past week now I've been aspirating like crazy. I'm up every two hours choking. I don't know if the fistula suddenly got larger or if I'm producing more saliva for some reason, or what but if it doesn't calm down soon, I'm going to have to contact Dr. Miller because it's getting really bad. And I hate that most of the time when I cough up whatever is choking me, it's bloody. I'm pretty sure that's just because my stoma is dry from it being winter and things being too heated wherever you go but still, it's not fun to see.

Okay, that enough grumbling. Back to updating.

So Michelle e-mailed me and tried to get me to come in today to insert a speech prosthesis in the fistula. I couldn't make the time slot she scheduled. I had already made the vet appointment for the new furballs. And normally I wouldn't hesitate to re-schedule but Dr. Lefler specifically bumped another patient to give me the 10:00 time slot so that I would still have time to make an appearance at the QED holiday lunch today. I would have felt like a scumbag canceling. On top of that, Dr. M had told me they've never used an existing fistula to place a speech button before. They usually like to control the puncture themselves. On top of that, I'm currently not opening my mouth far enough to put the speech button in the usual way. There's another technique where they can go through the stoma instead of the mouth but Dr. M said it involves a lot of cursing. So after telling me these two things, I'm not sure I want to be their guinea pig! And I'm especially hesitant now that I'm aspirating so much. If the fistula has opened up more, then it's likely that putting a button in it will cause it to open even further and a) I'll lose a $250 button that I have to pay for out of pocket and b) I'll have a huge hole between my lungs and my throat! Anyway, Michelle said she would try to re-schedule and I haven't heard from her since. I'm assuming we're now on hold until after the holidays. Dr. M also said that he would be making me the appointment to have the Botox done on my saliva glands before I go back to work but I haven't heard anything about that yet either. They're suddenly slacking over there. I hope it doesn't end up being scheduled for after I'm back to work already. I currently have 3 other doctor appointments scheduled during my first 2 weeks back. My boss guy is not going to be thrilled.

Of course, this is assuming QED wants me back. I've been in touch with HR to see what they need from me for me to come back and I'm getting a bad vibe. Like me coming back is not a sure thing. I talked to some coworkers about it. I'm told the temp they hired for my absence isn't working out very well so they don't think there's going to be a problem with me coming back. I guess the temp missed her very first day of work because she had to put her dog down. Then a couple of weeks later she got sick and missed work. Then her kid got sick and she missed work staying home with him and I think I was told the kid is like 14 or 15 years old so staying home really wasn't necessary. Now she recently got into a car accident and missed another week of work. It sounds like she's been out more than she's been there! Maybe my vibe translator is out of whack. I sure hope so.

Although other coworkers have been giving me nightmares about what I'm coming back to. It sounds like our Sales guy, Chuck (my biggest job dis-satisfier, I might add) is making a huge mess of things and nobody has been able to reel him in. I really don't want to think about any of it until I'm actually back at my desk. I keep having to tell my peeps to shut up. I'm in recovery mode from cancer, for crying out loud. Let me have my 3-4 weeks of peace and quiet where I just have to concentrate on feeling better!

Okay, now I'm just rambling and the QED lunch started 5 minutes ago. So, I gotta go. I hope everyone has an absolutely fantastic holiday filled with happiness and love! I know I will. :-)

Friday, December 13, 2013

December 13

The new additions are doing fine. Ethan is eating everything in sight. Sterling is still favoring the warmed up baby food but is sounding better coughing/sneezing-wise. They both went to see my vet this afternoon to get checked out. She put them on antibiotics for a week to try to get things to clear up faster. Meanwhile, it's okay that I didn't get a picture of baby doll holding Ethan last week because it was NOT a once in a life time occurrence. Actually, it would seem that Ethan is HIS cat, not mine. I get home and I'm hustling around the house for an hour and a half before Ethan  makes an appearance to let me know he's alive. Baby doll walks in the door and within 5 minutes the mouth is there, trying to climb his pant leg, wanting to be held and tell him about his day. Sheesh. Even Sterling favors baby doll. I seem to be second choice in both their eyes. I'm like the mom who has to love them so they know I'll be there when they need their faces washed, or their bellies scratched but the real attention comes from dad. PHBTTTT. That's what I have to say to that.




Anyway, enough grumbling about my good deed for the year in taking in two homeless waifs.

So, the new stove was delivered on Saturday and as feared, it couldn't be installed. I was stove-less until Wednesday! I was dying! And let me tell you, there was some MAJOR disappoint from my cancer team when I showed up treat-less on Monday. Luckily I have my one week follow up this coming Monday so I'm going to make it up to them. Here's a picture of the beautiful Christmas gift that the love of my life bought me.

My last radiation appointment on Monday went without a hitch. The girls bought me a little parting gift. It was a bag full of cat toys and treats. LOL!

Tuesday my television was delivered and installed. The guy was there for two hours and couldn't get the TV to connect to the wifi. I was NOT happy. I had him note it on the invoice before I signed it. I then sent up the bat signal and Jamie was over to my house in a flash. It took him another two hours to figure out the problem. Turns out there was an obscure, incompatible setting on my router that had to be changed specifically for the Sharp brand. Strike one for Sharp. Then we went looking for the Amazon app because that's the app that I use the most often on my Smart TV's. Turns out that Sharp brand does now support the Amazon app. Strike two for Sharp. Jamie said no problem, you bought a Smart Blu-Ray from Samsung as part of your home theater system, we should be able to access Amazon from there. Well, it turns out that the home theater that I bought a) was not wireless (say what? I thought EVERYthing was wi-fi compatible these days) and b) it didn't support the Amazon app. Strike one for Samsung! So, I packed the home theater system back up and took it back yesterday. Traded it in for an LG system that costs twice as much but hopefully will do what I need it to do. That's baby doll and I's project for this Sunday is to get that all set up. Meanwhile I was getting a lot of flak for going 60". After having this thing installed, I don't regret it one bit. It looks gorgeous! I told baby doll that I think we should host a super bowl party to show off how awesome the TV looks in that room. Of course now I definitely need to upgrade my cable package. That's on my list of things to do this week. Here's a picture of my "congrats for completing chemo and radiation" gift:

Wednesday morning Scott's guys stopped over and installed my oven. Woo hoo! I was once again ready to rock and roll!

Kunkel came over for lunch that day, not that she would let me feed her but....

I hadn't seen her in a while so we had some catching up to do. The cats LOVED her.


Wednesday night Scott's daughter, Jessica, came over. She wanted to meet the new additions. I think Ethan was almost smuggled out of the house under her coat!!I fed her and her dad dinner (lasagna!) and then we spent the rest of the evening making gingerbread houses. Fun!



Thursday I went to the hospital to pick up a bunch of prescriptions. They gave me three prescriptions and then rung me out. I was like wait a second, where's my pain med? The chick said it wasn't in the system. Say what?? Nurse Claire said she had tubed it down the day before. Whatever. Now I have to go hunt her down and see what the hell happened. So I paid for the meds that I DID get and left. I was halfway down the hall when I realized my bag felt really light. I checked and sure enough, they had only given me two of the meds but charged me for three. WTF? I fucking HATE that pharmacy. So I went back and showed the girl that she hadn't given me my thiamine. She checked the computer and sure enough, she just assumed it was in the bag with the zinc, she didn't realize that it had to be refrigerated. So she walked over to the fridge and got it for me. At this point I simply started crying. I was having one of those weepy days. All I want to do is walk into that pharmacy, just one time, and have everything go smoothly. It never does. Anyway, I then went down to radiation and asked for Claire. 30 minutes later Nurse Carol (one of my faves) showed up, saw that I was crying, and was immediately all over me asking what was wrong. I told her about the missing pain meds, about the screw up with the thiamine, about how I had company coming at noon and it was already 11;00 at this point, and I was simply stressed to the max. She took me in back and got Dr. Mike. He was dismayed to see me crying too. It turns out my pain med script was in the system but insurance won't release it until Saturday. Couldn't the chick have just told me that?? THAT I would have understood! Anyway, Dr. Mike wrote me out a script for morphine to bridge me until I can get my other pain meds tomorrow. He also upped the dose on the oxycodone so that hopefully don't run out anymore before the insurance kicks in again. He then told me to keep my chin up. He said that I went through all the hard stuff with a smile on my face and now that it's over, I'm all sad. He said it's just not right. I told him I never do anything the normal way. He was telling me that Dr. S has been in this business for many, many years and that in all the time that Dr. Mike has worked with him, he has never heard Dr. S talk about a patient as much as he talks about me. He thinks my zest for life and my continuous sunny personality that shines through are amazing. That was nice to hear. I really like Dr S. too. He's a total sweetie and a huge improvement over my radiation doc from last year. Hell, in general, Strong has been a huge improvement over everything from last year (except their pharmacy!). I'm so glad I made the change. So, I made it home at 11:58. I thought for sure that I would run inside only to find a text on my cell phone, which I had accidentally left next to my bed, saying the guys had been there and I wasn't home so they left. Instead, I found a message from them from 2 minutes before saying they were just leaving QED. Phew! I started whipping around the kitchen like nobody's business! Normally the guys walk in and I immediately slide them food. They had to wait a little bit on this particular day but it worked out well because other than JT and Toby who are usuals, they brought along Paul who was not only a newbie to the Quinny Euchre lunch but it turns out he didn't really know how to play Euchre. So the guys taught him while I got lunch pulled together. Actually Paul even helped with lunch. He sliced my mozzarella and grated my parmesan. THEN learned how to play Euchre. THEN proceeded to beat me and Toby with one hand while eating chicken parmesan with the other hand. I'm not sure he's going to be invited back. LOL!

Today I had an appointment with Dr. M and then with Michelle. Things went well with Michelle. I did a little homework this past week and there's definitely some improvement in the movement of my tongue and lips. She told me to keep up the good work. I had a whole list of questions for Dr. M. I've copied them below with the answers in blue.



1.    When will the port be removed now that chemo is done?
 They usually leave it in for 6 months after treatments end. They especially want to wait until after the first PET scan which Dr. Miller wants to have done in 3 months.
2.    When will the plastic tube that Dr. V implanted in my throat be removed?
 Dr. M wants to wait until all has healed and the swelling has subsided. He said give it another month or two and then we can revisit this.
3.    When can I get the Botox? How long does it last? What exactly are the effects?
 Dr. M is setting up an appointment for the Botox treatment for me now. He's hoping I can get in fairly quickly because they're usually pretty slow this time of year. He said it's an in/out procedure and the treatment itself should last 3+ months. It's not supposed to totally stop saliva production, just slow it down. They do it fairly often to babies who have excessive drool problems.
4.    More and more I’ve been waking up with a lot of fluid under my eyes. It prevents me from putting in my contacts or wearing makeup. Is this normal? I know that last year there was a lot of fluid retention in my neck that I referred to as the “bullfrog effect”. Is this the same thing but further up my head because of the scar tissue on my neck?
 Yes, it's normal. With most of my lymph nodes removed, the fluid in my head/face/neck doesn't know where to go. He said it should get better over time. It might help if I were to elevate myself a little when I sleep.
5.    When do you think I’ll get a speech prosthesis put in?
 At first he said 3-4 months from now but then we started talking about the next question.
6.    Is there any way I can check if the fistula is still open without trying to drink water and see if I choke?
 No, there is no other way to check on the fistula other than drinking. Although he took a look in my stoma and manipulated my neck and said he can see air bubbles being released so it's still there. He said he can also see granulation around the hole which means it's healing. I told him that Dr. V said it's in the perfect place to put a speech prosthesis so I'm wondering why we don't just do that instead of waiting for it to heal. He said it was a novel idea. He said they've never done that before. Normally they like to puncture the hole themselves so they have some control over it. His big fear is that they put the prosthesis in and for some reason it makes the fistula grow even larger. He said it might be worth a try though. The other problem is that I'm currently not opening my mouth wide enough to place the prosthesis. I guess it goes in through the mouth. Although he said there's an alternative way to placing it but it involves a lot of curse words because it's such a pain to do. And he's not even sure Michelle knows how to do the alternative placement and she's the one that would be putting it in for me. He's going to talk to her and get back to me on this whole thing. I see him again on 1/10.
7.    When can I start looking at getting a replacement tooth for the hole in my mouth? Dr. V said something a couple of weeks ago about sanding down the exposed bone. Is this necessary to get a tooth implant? I wasn’t sure why he mentioned it and it’s been niggling at me.

Shaving the exposed bone doesn't really have anything to do with getting a tooth implant. They're hoping that now that radiation is done, the tissue surrounding the bone will grow over it and cover it to protect it. If it doesn't, then it's at risk for chronic infections. By shaving it down to either the tissue level or a little below the tissue level, gives the tissue a better chance of healing over the bone. He said we'll give it a few weeks to see if it does it on its own first. As far as getting a new tooth to replace the one they pulled, again, he said to give it a few months. Wait for everything to settle down, make sure the bone didn't get deteriorated from the radiation treatments, let things reach some kind of norm before going in and messing with stuff. 

Time. That was his answer to almost everything. Just give things time. Which is fine. Everything he said made sense. He was making me laugh when he was examining my neck where the tumor used to be. His comment was "So, I see your conjoined twin decided to leave you. That was nice of it.". Ha! He's a funny guy.

So, those are my updates for the week. I'm heading back to the couch to snuggle with my hot honey bunny and watch a movie. I think we're going to watch The Illusionist. Love that flick!



Saturday, December 7, 2013

December 7

So now that chemo treatments are done, exactly how long will it take for my energy levels to even back out to something normal and steady? Thursday I went to bed at 4:15, thinking I was taking a nap. Other than waking up a couple of times to watch TV for 20-30 minutes, I was down for the count until 5:30 Friday morning and even then I woke up all tuckered out. I've had enough of these 12-13 hour stints of sleeping. They can go away now. They have my permission. :-)

I only ended up coming home with 2 cats on Monday night instead of 3. It turns out Diego tested positive for feline leukemia (FL) so I chose not to bring him home with me. I wasn't even sure what FL was but it didn't sound like something I wanted to mess with. Meanwhile, I had vet appointments this week for Jack, Freedom, and Itty. I went ahead and asked my vet what FL was and what it entailed. So, it's a highly contagious cat virus (only amongst cats) that can be spread through blood, spit, sex, etc. Some cats get it and live perfectly normal lives while having it. Other cats get it and it immediately compromises their immune system so they can die simply from catching a cold, are more susceptible to getting cancer of the lymph nodes and internal organs, etc. Supposedly, if your cat gets immunized against FL every year, they can't get it from a cat wtho already has it. That being said, the vet said that if I hadn't bonded with the cat yet, she too would have made the decision to not take him home as well. It just doesn't seem fair to put four healthy cats at risk.

Speaking of sick, Ethan, the 3 month old mouth, is sick. He has some upper chest congestion going on which causes him to walk around coughing and sneezing all the time. The vet at the city pound felt it was bad enough that she didn't want to put him under to neuter him but it wasn't bad enough to need any meds either; She felt that if he went home with me for a couple of weeks, got him out of the kennel setting, that he would clear back up in no time. I have to call them back in few weeks to let them know how things are shaking out and to reschedule the neuter appointment.

Sterling, the one year old, came home healthy as healthy could be. He was happily neutered and feeling just as curious and as loveable as he did when  I saw him at the pound the first time. I ended up putting both him and Ethan in a safe room together. I figured Sterling wasn't going to bother much with a little scrap of fur and Ethan had been caged up with his 3 siblings so he wasn't used to being alone. Well, for two full days Ethan tried sucking up to Sterling. Wanting to be buddies, wanting to nap together, huddle together, play together, whatever. Sterling wasn't having anything to do with it. He kept growling, turning his back on Ethan, walking away, etc. Finally, the three of us fell asleep on the chaise together the other day, at which point I guess Sterling thought Ethan was okay because every time after that, I would find them curled up together, napping in the same chair, or in the same sunbeam on the floor. It made me so happy that a grumpy, black, cat could dig down deep and find some maternal instincts to help out a sick little cat. And what thanks does the big softie get? Now Sterling is coughing, sneezing, and has a runny nose. <sigh> They both have an appointment to see MY vet next Friday to see if there's anything to speed along the healing. I've been syringe feeding warm meat flavored baby food to Ethan because other than seeing him drink some water, I hadn't seen him eat the first two days he was here. Then a couple of days ago, while I'm spoon feeding him, Itty came rambling over so I gave him a handful of treats. Ethan was on those babies like white on rice! Crunching away no problem. Here I am thinking he's having trouble eating when in reality, he was just loving the fact that he could get babied non-stop. Little bastard was milking it for all he was worth!

So that's where we're at with the new family members. Daisy hisses at everybody and refuses to be in the same room as any of us. Itty kept running away with his tail tucked between his legs at first. He's now starting to get used to the additions. He'll come into the same room with them, maybe even sniff at them a little, and then move along on his own. Here's some pictures:





And so far so good with Baby doll's allergies. He was even petting Ethan which was a first time ever scenario. He had to stop after a while though because his arms got Itchy. I wish I had thought to get a picture of him holding the kitten since it may be a piece of history that never repeats

Tuesday I saw Dr. K, my PCP. My thyroid numbers are still out of whack. It turns out I've been taking my med wrong. I'm supposed to take it on an empty stomach, one hour before food and two hours before eating Vitamin C or calcium. Doh! I've just been taking it right along with the rest of my meds at breakfast time. So I've had to adjust that method. We're going to stay on the same dosage but taking it correctly for the next month and see what happens. I felt so bad about letting Dr. K down like that, that I finally succumbed and let her give me a flu shot. I've been resisting those things for over a decade now but I wanted her to leave her appt. with me on SOME kind of high note. So all is well.

I had my usual sucky Tuesday with the nausea and general run downess. Here's hoping that that was the last bad Tuesday for now!

Wednesday I had another appointment with Michelle. I got in trouble for not doing any homework in between our appointments. I was even mad at myself because for the first time, my jaw had closed up enough that I couldn't fit a toothbrush between my teeth! UGH! I promised her I would work on my homework this time around. I even took a picture of her making sad puppy eyes at me to remind me that I need to do so. I'm also keeping a journal of exactly what I do and when so that she can see what happens when I'm not with her.



After the hospital I had an appointment with Jack and culled enough energy to get my house spiffed up for the week. Thursday I had a vet appointment with Freedom and as mentioned previously, I went to bed at 4:15 that afternoon. I probably pooped myself our from cleaning! Friday was my next to last radiation treatment. Phew! I've noticed the last couple of treatments have been shorter, which has been nice. Dr. Singh was telling me about how he's going print me out an entire plan of what his follow up expectations are. This made me very happy because this is one spot where I felt Coniglio and Attanis totally dropped the ball. I had no idea who I was supposed to see last summer or how often after the treatments stopped. It wasn't until I got the earache in May that I took it upon myself to get my butt back to the office and do something about it. So Dr. Singh has already set up appointments to see me one week after treatments end and then one month after treatments end. And at the one month appointment we will discuss when the next scan should take place to make sure the cancer hasn't come back. I'm already liking the plan.

After I was done with Dr. S for the day I popped up to see Dr. M because he had sent me a note. Turns out her found some freezer pops for me! How sweet was that! He's such a good guy. I have an appointment with him next Friday. Just as a checkup I believe but I also told him that I want to discuss getting those Botox shots in my saliva glands before I go back to work. I would really prefer not to go back into the workforce with a tan washcloth hanging out of my mouth. :-)

Yesterday the guys game over for a Euchre lunch. I hadn't seen them in over two weeks so it felt good to see the peeps again! I also loaded them down with Christmas prezzies. They're going to get such a kick out of them! This is the pic they took of themselves in the car upon leaving my house. Ha!



And that brings me up to today. Today, my new oven that baby doll bought me for Christmas gets delivered and installed. Woo hoo! Baby doll was asking what the very first food would be that I would cook in it. I hadn't given it any thought until he asked and then is seemed like a no brainer. I'm going to make lasagna, of course! It was the very first meal that I cooked for Scott when I lost the golf game bet on our first ever date. Lots of nostalgia for us in lasagna so I'm going to do it up big! The only worry is that I'm changing from an electric stove to a gas stove. There's a gas pipe behind the stove already but it's capped off with the shut off valve in the basement. For some reason I'm told this may cause a problem for the guys who come to install it. Luckily, Scott has a coworker who can easily come do the hookup for me. He's licensed and trained for that kind of stuff. The problem is his availability to do it. All the nurses, techs, and doctors are counting on their one last week of treats. There was nothing but talk about it all this week. So, I can NOT walk into the hospital empty handed on Monday. If something goes awry tomorrow, somebody, somewhere had better be prepared to lend me their kitchen for the day! I have peanut butter bars and nanaimo bars to make!!

Not much else to report. I've been extra phlegmy this week. At first I thought I was waking up choking because I had aspirated but it turns out I'm waking up and choking on all the extra phlegm happening in the stoma. I don't know if the two extra cats have tipped my allergy scales, or if I caught a cold, or what.Other than that, the situation is normal over here. Soon to be improved I hope!

Monday, December 2, 2013

December 2

I'm sitting in my chemo pod receiving my very last chemo treatment. Yay! How exciting is that?!? The end is in sight!!

So my Thanksgiving was wonderful! How was yours? Surrounded by good food and lots of love I hope! Baby doll and I had a very relaxed day. He sat around watching football and I bebopped around cooking and cleaning. Every once in a while I would pop into the living room, snuggle up on the couch next to him, and take a little nap. It was so decadent. Would that every day could be like that. Dinner was served around 5:30. I kept it simple. Turkey, mashed potatoes, gravy, corn, and two types of stuffing. Baby doll was in heaven. I ended up going up to bed before him. His beloved Stellers were playing the late game. I had picked whoever they were playing against in the football pool for the week. I think baby doll was a little disgusted with me for not supporting his team. I'd like to see where it says in the girfriend contract that that's a necessity. On top of that, I'd like to point out, my team won. ;-P

It was off to radiation as usual on Friday morning. I was surprised  that the roads were totally barren. I expected major traffic for the Black Friday deals. Maybe I missed the rush or maybe everyone was out on Thursday night this year! Anywho, I had no plan to go shopping that day but when I got home I did my daily check on the SEars website to look at the fridge I had fallen madly in love with. It was on sale!! It was even cheaper than the original sale when I had first seen it 3-4 weeks ago! So I immediately buzzed over to Sears and bought it. Woo hoo!

Saturday I woke up with some energy. I was up cleaning house, doing laundry, etc. I was showered and raring to go at 9:00 am. I went upstairs to let baby doll know I was going shopping. I asked him if he wanted to come with or if he wanted to sleep in some more. Turns out he was up for some shopping as well so he took a quick shower and we were out of there. We had a time limit though because my new fridge was being delivered between 1:45 and 3:45. Yeah, talk about a fast turnaround on that purchase! So, we hit Kohl's where I had seen an ad for a hoodie that I thought his daughter would like. Then while he was still browsing over there (man, he can spend some major time browsing!), I walked over to Target and found a cute gift for his niece. We then had just enough time to stop at Sears to look at TV's. He and I became mesmerised by a 60" Smart LED flat screen made by Sharp. I was a little hesitant because all of the research I've done has been for Samsung and LG, I have no idea what the Sharp brand is all about. But in the end, it was a gorgeous TV so I bit the bullet and bought it along with a surround sound system and full installation done by Sears. It was a hefty price tag but I think it's going to be SO worth it. I scheduled to have it installed on December 10th, the day after my last radiation treatment. Talk about celebrating! (It's Sammy's birthday that day too so I'll be thinking of her as my huge ass TV arrives!) Baby doll is so excited. As soon as we got back home he started measuring the wall to see how big it was going to be and he's thinking about pitching in some money to have my cable upgraded from the basic 22 channel package that I have now. He said that I'm never going to be able to get him out of my house once that thing is installed. LOL!

My fridge arrived a little late but it's gorgeous. Well worth the money I paid for it. My old fridge was moved into the basement to handle any overflow food that happens. I might even move my beer down there and get rid of the dinosaur in the garage that currently houses my beer.

Saturday night I ran out of pain meds. This is never a good thing. I wasn't scheduled to get more until Monday morning but I hopped on line and saw that the hospital pharmacy was open from 9:00 - 1:00 on Sunday. Needless to say, I was in the waiting area at 8:50 Sunday morning. Thankfully, they let me pick up the meds a day early. I was a hurting unit. Things are getting rough here at the end of treatments.

Sunday afternoon my friend Toby popped over to see me. He had remembered that I had requested a new lucky cat the next time he was in Asia. He couldn't find one the last time he went and brought me back a beautiful jade Buddha instead. He found one this time around though. It's even better than the normal statue that I was expecting too. It's actaully a tea cup that you can flip over and it becomes a lucky cat statue. It's the cutest thing ever! I love it! He also brought back a good fortune charm from our Asian sales guy, Nobu. I'm supposed to keep it in my pocket and it will attract good fortune to me. How sweet are the guys I work with? I love them all so much!

Laster on yesterday afternoon baby doll came over with his daughter, Jessica. We went to a tree farm out and Webster and picked out a Christmas tree for my living room. We then brought it home and baby doll strung it with lights. Then baby doll and Jessica decorated it for me with some Christmas tunes playing in the background. It was very Norman Rockwell. Well, except for Itty taking the decorations off the bottom of the tree as fast as they were putting them up. Jessica got a huge kick out of Itty. He really has 10x more personality than a cat should be allowed to have. Which of course makes tonight all that much more interesting when I pick up the three new members of our household. I think things are going to be in an uproar for a few weeks! Anyway, I made baby doll and Jessica some dinner and they had some fun playing with my text to speech program, then baby doll took Jessica back home. It was a good first time visit.

So, that brings us to today. I realize that there wasn't a lot about my health in this blog. I don't have much to report. I've been managing the mouth pain. Nothing new has cropped up. The fistula has been bothering me a little. Sometimes at night some spit will go down the wrong way and I wake up choking but it's not that big of a deal. Next Monday is the end to all of this nastiness. I got permission from the cancer team to go back to work on January 13th. I sent a note to HR. I'm waiting to hear if my workplace actually wants me back. I sure hope so!!

So, the next time I talk to you I should be done with treatments and on the road to recovery...again. Talk to you then!




Tuesday, November 26, 2013

November 26

Wow. I have had a crappy week. Today is the first day I've felt somewhat up to snuff since last Wednesday. To celebrate this fact I went to the city pound and adopted three cats today. Yep. Three. Why yes, yes I am the crazy cat lady. I pick them up Monday afternoon. I'll have to post pictures of the new babies once I get them home. Diego is a 3 year old brown and black tiger mix. Although he's still in holding until Saturday. Owners have 5 days to come claim strays and believe me, fat boy looks like he definitely belongs to somebody. What a sweetie though, I couldn't help but sign up to get him anyway. Then there's Sterling. He's a one year old, all black cat. He's lean, lithe, and has legs that go on forever. And talk about nosey, that is one curious cat. He's going to give Itty a run for his money. I'm hoping Mr. Laidback Diego will simply sit on Itty once and will hopefully be left alone. Lastly, there's Ethan. I wasn't even looking at kittens. I prefer the older cats but when I was over talking to Sterling, there was this darned little black kitten in the lower adjacent cage who kept grabbing my pant leg with his claws and yelling at me to get him the heck out of there. His 3 siblings who were also in the cage with him were happy to be piled into a bed having a snooze fest but this little scrap of fur was totally storming the cage. I finally grabbed the cards to adopt Diego and Sterling and headed out of the room and up the hall. I only made it halfway to the front desk and I had to turn around and go get Ethan's card too. I simply couldn't leave that little 4 month old mouth there. So, yeah, three cats are headed to the Quinn household. Baby doll is flipping out. He grilled me like you wouldn't believe. He wanted to know how you introduce new cats to a household, if they go outside, how do they know where to come back to, how will the dogs handle it, how will the other cats handle it. Dude had a billion questions. Monday should be fun. :-)

Okay, so on to telling you about my crappy week instead of babbling about how I'm celebrating feeling human again. When I last left you, I had had my first appointment with Michelle where we actually did all sorts of exercises for 45 minutes. I think that's what kicked off my problematic week.

Thursday, after radiation, I came home and went straight to bed. My jaw was absolutely killing me! It hurt so bad that I was crying! They're always asking me to rate my pain on a scale of 1-10 and if I hurt it's usually a 3-4. I think there was one time where I rated my pain a 5 and it was a really bad day. Well let me tell you, the pain in my jaw was at least an 8. It was THAT bad. It was the empty socket where my tooth used to be that was throbbing so badly. Oxycodone didn't touch the pain one bit. I finally got it down to a dull ache by taking liquid Tylenol and pouring lidocaine gel on the area. It still didn't make it go away but it muted it enough to be bearable. I never made it out of bed on Thursday other than to use the bathroom. Friday morning I woke up at 5:00. Still a dull ache going on so I did some more Tylenol, a shot of Oxycodone, a dose of the good nausea medicine, and 20 oz of Gatorade. I then went back to bed until 6:30 when my alarm went off. I woke up totally pain free. It was freakin' amazing! I felt wonderful! So Friday started out great. Then 2:30 came along. The pain came back with a vengeance. Not good. I immediately did my little miracle combo from the morning but it was not so miraculous this time around. It did dull things up though so I thought I was good to go for the play that baby doll wanted to go see. Well, I ended up throwing up in the car on the way there. Luckily, I'm still sucking on these damn washcloths so it came up, hit the washcloth, and went right back down. Baby doll would have killed me if I puked in his car! Well, actually, sweetheart that he is he would have been totally sweet and understanding about it, but I still would have felt like crud for messing up his car. I threw up again at the play while I was in the bathroom. A small amount escaped that time and I got a red medicine stain on the front of my brand new white down winter coat. Now I'm pissed. On top of it all, the play kind of sucked. It was a college production. The voices weren't that good, the acoustics in the theater were lousy, the casting was odd. I fell asleep for almost half of it.

So Saturday was supposed to be the big flat screen TV shopping day. Yeah right. I ended up on the couch all day long. I was running a fever off and on all day. No more vomiting but I felt like death. I'm supposed to call some emergency number if I run a fever over 100.4. I was running a fever of 100.5. I refused to call. I spent the day watching movies and napping on my man's shoulder. It was actually a pretty good bump day.

Sunday I felt marginally better but still really rundown and the jaw pain came back in force. I stayed right on top of it this time though and kept it to a dull roar. Sunday night though I was doing the regurgitating thing and I woke up coughing crap out of my stoma again! What the hell! It happened like 3 times. That hasn't happened in a while now. Both the regurgitating thing and I swear I did not overeat this time and there was no homemade milkshake involved. And the coughing stuff out of my stoma. I thought the damned fistula had closed which is why Michelle has me drinking water and eating pudding during our sessions! Anyway.....

Monday finally came and I griped to my tech team about my crummy weekend. They called a nurse to see me after my radiation appointment. I went through all of my trials with her. She then went and got Dr. Mike. I went through everything with him (thank goodness it was Monday and I had my iPad so I could simply type everything once and then have people read what was already typed!). Dr. Mike then went and got Dr. S. I went through everything with him. He wasn't happy. He immediately called up and got me an appointment with Dr. V. He also scheduled me to get exrays taken of my chest and my jaw. He wanted pictures of my chest because he was afraid that me aspirating all this liquid caused me to get pneumonia which could account for the fever. He wanted pictures of the jaw to see if some kind of infection had set in or if there was some other reason for my jaw to be killing me. I then went and saw Dr. V. He said he doesn't see anything wrong in the area where they yanked my tooth other than the exposed bone. He said there could be a chronic infection there but it didn't sound like he was going to do anything about it. He said eventually down the road they can file down the exposed bone and I can get the hole capped. He said there was a huge ulcer further back along my jaw from radiation. He said that might be causing the pain and that's simply a price to be paid for having radiation. It will eventually go away once the treatments stop. He then looked at my stoma. He said the fistula has reopened. I'm once again not allowed to take anything orally. Guess that puts a stop to the swallow lessons from Michelle once again. He said it looks like it's the hole they originally put there to hold my speech prothesis. He says if it stays open, they can eventually use it to put another speech prothesis in without having to repuncture. I have no idea if I'm rooting for that or not. Getting something repunctured sure doesn't sound like fun but I'd really like to be continuing on with working on swallowing with Michelle. Anyway, once I was done with him it was off for the usual port draw. Then I got to see Dr. K. All goes well with chemo as far as he's concerned. I won't see him again until Dec. 23rd for a final follow up appointment. Then it was back to infusion so that I could get my chemo treatment. Alas. I was unable to hold my bladder for them like I usually do. This means I did not pee nearly enough for them to approve the start of my treatment. I had to sit around for an hour while they hydrated the hell out of me but even after peeing a second time I still didn't go enough for them. They had to call up and get special permission from Dr. K to go ahead and start the chemo without the necessary urine numbers. Sheesh! Then the jaw pain set in. I immediately asked Nurse Lindy if there were any pain meds she could get me. I told her I had some oxycodone with me but that it usually didn't help much. She paged Dr. Mike to see if he would approve some liquid tylenol for me. I was very upset with myself that I hadn't packed any of that in the lary bag. It's in there now, believe you me. It took FOREVER to get the liquid tylenol so I finally went ahead and took my dose of oxycodone 2 hours early. Then 15 minutes later the tylenol arrived. Between those two things and rinsing my mouth out with the ORa-Magic that Dr. Mike had given me, I was able to take the pain back down to a manageable level. After it made me cry, of course. And for the first time I ever I curled up in a little ball and slept through my treatment. Usually I'm on my iPad answering e-mails or playing some cool games. Not that day, my friend. I was whooped from day after day of crappiness that was going on. I needed that nap too because after chemo was finally done, it was off to radiology to get those pictures taken. Which I did, and that made me cry too. The second machine they stuck me in needed to have my neck bent at angles that it currently cannot go so the tech chick running the machine had to manhandle me a little bit to get me in the right position which hurt like hell and made me cry. I think part of it was exhaustion at this point as well. I didn't get home from the hospital until 4:45. I had been there since 8:30. That was a long freakin' day.

I ended up having to cancel my movie date with Kit because of it. She ended up being my princess in shining armor anyway though. She and her mighty steed came over with gifts of Gatorade and liquid ibuprofen for me so that I could avoid the Thanksgiving shopping craziness at Wegman's. I love that woman.

As mentioned previously, today I finally woke up feeling slightly back to normal. I'm alternating between liquid tylenol and liquid ibuprofen to keep the jaw under control. I'm not even waiting for it to hurt. I'm simply taking something every 4 hours. Dr. S stopped by to see me after my radiation treatment. He said there are some small bubbles in my lungs that show that I AM aspirating some liquids but he says they're nothing to be concerned about. No pneumonia. He said there was nothing found on the xrays of the jaw bone either. There could be some breakdown of the jaw bone starting but since it's not visible yet, he doesn't think we should change our current plan. He said even if it was visible, he still wouldn't want to change our current plan, he's rather wait until all was said and done and then correct it with surgery. He said there's no point in letting the cancer come back and kill me while we dick around with whatever is going on with my jaw. So, that's that. I also signed up to go in for radiation this Friday. Dr. S asked if I wanted to and I said sure. I think he was a little taken aback. He had a whole speech prepared to talk me into coming in for the radiation. He said that 4 days of not being radiated mid-treatment is a big enough window for the cancer cells to start growing again. So, my choice of going in on Friday sounds like a good one to me!

After Dr. S was done with me it was Joanna's turn. She said she had heard about my rough week of fevers and vomiting. She was a little concerned about how that affected my weight but as it turns out, I went up!! Woo hoo! At least one thing came out right!!

Okay, I'm done rambling about all the health crap. Plus I"m getting tired. I think it must be bed time. Some quick fun stuff. I last blogged right before walking out the door to the casino with Baby Doll. He came home with $82 in winnings, I came home with $55 in winnings. I'm seriously loving that place!!

Baby doll remembered that he gets a discount on GE products for some reason. I guess just for being a FedEx employee. So he found my oven for almost the same price as HD had it on sale. I think there's a ~$30 difference which is negligible. So, he's on his iPad right now getting ready to order it. Woo hoo!

I'll end with some pictures tonight. I made something called Sex in a Pan for baby doll's coworkers. I hate when chicks name their desserts stupid stuff like that. I should tell baby doll to just call it pudding cake although knowing the pervs he works with, they'll probably get a kick out of the actual name. Baby doll was also in the kitchen cooking tonight. He and I are spending a quiet Thanksgiving Day together. I bought a small 13# turkey for him with some usual trimmings. He said that he makes a chocolate pie every year for turkey day so I let him take over my kitchen tonight. Here's what we got:


I hope everyone has a safe and fun filled holiday this week! I'll catch you on the other side!

Wednesday, November 20, 2013

November 20

The tumor is now totally flat. It's just a dry, white spot on my neck. Yippee! Of course Dr. S thought he should give me something new to worry about last week and was talking about a new lump on my neck. Thankfully I had an appointment with Dr. M on Friday and he said it was nothing. It's just the way the skin graft healed and it has always looked like that. Dr. S saw me on Monday and agreed. I guess he went back and looked at some pictures he took and he just hadn't noticed how lumpy my neck is due to all of the scar tissue. Phew. As I commented to Kunkel though, I'd rather Dr. S be jumping at shadows than simply letting things slide. I'm happy to have him cause me a little needless worry if it means he's watching me that closely! I didn't realize it either but I've been feeling pretty hopeless because of the stupid tumor on my neck. Docs only gave me a 20-30% chance of survival, cancer came back a third time just a few short weeks after surgery to remove the second tumor. It all just seemed so doomy-gloomy. I kind of resigned myself to the fact that I would likely be dead this time next year. Now that the tumor has been made to disappear by concentrating the radiation on it, I suddenly wonder if maybe I'm going to survive this mess for a little longer after all. It definitely put a little bounce back into my step over the past week.

The Jevity 1.5 is in, the Jevity 1.2 is out. One of the doctors had a few cases of the 1.5 laying around too so she donated it to me so that I could start eating the higher calorie food immediately. This left me with 6.5 cases of the 1.2 which I then donated to another patient who was in need. Joanna said he wanted me address so that he could write me a thank you note. We decided it would be better if he simply passed it along through her. And for the first time on Tuesday, I weighed in the same as the week before! Joanna was very relieved. She's glad we finally halted the downward trend. Now we just need to get things to start moving up again. Baby doll and I drove to the Niagara Falls outlet mall this past weekend for a little retail therapy. I wanted to buy him a leather coat for Christmas. I hit my own favorite store, Bass, and for the first time I had to buy a size 0. And yeah, to all the women out there that just groaned, I'm pretty disgusted with myself as well. :-P

On Mondays I keep coming home all hyped up and buzzing around like a crazy woman. I finally asked Nurse Joan at chemo this past Monday what the heck they do to me that causes that. Turns out they give me steroids every week with my chemo and that's what gets me all jumped up. I can now totally understand why the athletes get hooked on this crap! Anyway, I asked her why I get steroids and I guess it's like taking Benadryl after you get stung by a bee. Supposedly it helps suppress any nasty side effects from the chemo that could happen. The other pill they hand off to me during chemo is a nausea med. I'm learning to love anything that helps with the nausea. I ran out of the good stuff last Friday and had to resort to my Ativan and my backup nausea med. Yeah, they just really don't quite cut it. I had a rough day on Sunday. I kept trying to call the refill in to Wegman's for the good stuff but the recording kept saying that it was too soon to refill. I finally mentioned it to one of the nurses. Turns out my insurance company felt that the last batch I got should have lasted me a month. Phbtttt. My team is now arguing with my insurance company and meanwhile the hospital gave me another huge batch of the good stuff for free. Thank goodness. I don't know what's in that stuff but it's like a miracle drug when it comes to getting rid of the queasiness!

Today I had my first official therapy appointment with Michelle. FINALLY. I'm once again feeling like I'm moving forward with my recovery instead of simply treading water. We did all sorts of tongue and lip exercises. She has me drinking apple juice and attempting to eat pudding. I have a whole sheet of exercises that I need to start doing 3x a day. It was a real pick-me-up today to finally start working on being able to eat and swallow again. Not sure when the speech part will get thrown into the mix but I'm happy to take baby steps for now.

A bunch of my FB friends have been posting things that they're thankful for every day this month. I didn't realize it was affecting me reading all of that thankfulness but for the past week now I've been noticing the small things that I'm grateful for. My heat for instance. I am so glad that I am financially able to set my thermostat at 73 degrees and still be able to afford to pay the utility bill every month. I love that my house is so warm and cozy and happy! Of course this also makes me realize that my thyroid medicine is likely to be adjusted again in a few weeks because I"m still having a tough time moderating my body temperature, but whatever. :-) The other thing I've been thankful for is my youth and flexibility. I've mentioned that in the shower I have to wear a stoma cover so that I don't drown myself. I also can't put myself directly under the spray because the collar of the cover doesn't seal well around my lumpy, scar tissue filled neck. Because of this, I have to lean way back with my body to wash my hair without being directly under the spray. I can't imagine being 80 years old and trying to do a back bend like that! My one season of yoga is definitely paying off in that respect!

Anna, one of the radiation techs, keeps telling me that I need to hydrate, hydrate, hydrate. She said that it will help greatly with the fatigue that I've been feeling. I finally bought some Gatorade at Wegman's this week and have been syringing a bottle each evening. I have to say, I definitely do feel quite a bit more alert after sucking down 16 oz of that stuff!

I think that's about it for the health stuff other than the fact that my ear has started aching again pretty badly this week. Not sure if it's the weather or what. I'll give it another week and if it persists, I'll have to mention it to my team. <sigh>

So, some fun stuff. Baby doll and I went back to buy my oven and it was no longer on sale! WTH?? It was only 3 days after we had looked at it the first time. The chickie said things go on sale every Monday and Wednesday so she wrote down the model number of the one I want and I'm checking the website every Mon and Wed to see when it goes back on sale. It's a $200 difference for crying out loud! Today I also decided to check the Sears website for the fridge I'm interested in. I fell out of my chair! In the store, the fridge was $960, online it shows that it's $1189 and that's on sale! Holy crap. I don't need a fridge that bad. I think I am now going to focus on the flat screen for my living room instead. Last Thursday Mr. Jamie came over for dinner. Since I had a bunch of muscle in the house I had him and baby doll reconfigure my sectional couch. I then moved a bunch of stuff around and I am now ready for the TV to be installed. I just have to go purchase the sucker. Maybe baby doll will take me to Best Buy this weekend. I also want to join either BJ's or Sam's club. Maybe he'll take me to do that too.....

I am so impressed with the group of friends that I have, they are simply inspiring and it blows my mind. Most recently on the inspiration list are Kunkel and Justin. Kunkel has always dreamed of being on a TV game show. She heard that Wheel of Fortune had some caravan in Syracuse a few months back where you could go and play some mock games and win goofy prizes like mugs and t-shirts. She went. She ended up qualifying to be on the actual TV show. She was off to CA just a few short weeks ago and her show will air on January 8th. I can't wait to see her on TV!! She's not allowed to tell anyone what the outcome of the game was so I have no idea if she's now a millionaire or not. Actually, even if she won some money, they don't give it to the players until 3-4 months after their show airs. So she won't be a millionaire until April or May. But how cool is that?? To have a dream of being on a game show and then simply making it happen?!? I'm totally in awe of that woman.

Meanwhile, my buddy Justin is huge into shooting. He travels all over the place shooting in tournaments, makes his own bullets, owns like 96 guns or some crazy number like that. At one of his shooting matches a few months back he actually qualified to travel to Spain to compete for a spot in the Olympics. How freakin' impressive is that?? He went, he didn't make it into the Olympics. I guess this so tickled him though that he told me last week that he quit his job at QED. His last day is 12/20. He's going to spend the next two years doing nothing but training to qualify for the Olympics. Say what?? I asked him how he's going to support himself. I guess he's just been socking away money for years now and can easily take two years off from work and not sweat it. Can you imagine?? So, he and his girlfriend are moving to Colorado Springs. I almost cried when he told me. I'm going to miss him fiercely but I am also so excited for him to pursue a dream.

Let's see, what else is on the horizon in the life of Q. Speaking of which, Baby doll and I are going to see a play this Friday called Avenue Q. I guess it's a naughty version of Sesame Street? I was warned that there's puppet on puppet sex. This should be interesting. LMAO!!

I also need to get a hold of Kit. I haven't seen her in a couple of weeks now! We need to go see a movie or something. I'm especially thinking of her today because on a whim, baby doll and I have decided to head over to the casino and have a little fun gambling tonight. She really did create a monster by taking me to that place! So with that, I'm out of here. Wish me luck on the slots!

Thursday, November 14, 2013

November 14

Dr. S is VERY happy with how my tumor is looking. He said that since it's no longer red and angry, it means there's not a lot of blood in that one spot which decreases the chances of the skin deteriorating and breaking open. This is a relief since getting me healed back up from any kind of boo-boo is quite a project nowadays. I cut my finger peeling shrimp a couple of weeks ago and the darned cut is STILL not healed. And I already complained about my fingers cracking from the dry, winter air. Sammy sent me the wax bath to help combat it which I was really good about using for all of a week and then stopped again. So my hands are quite a hot looking mess at the moment. I just paused in typing this, went downstairs, and plugged in the wax bath. I really need to start giving my hands some TLC. Anyway, the tumor is also starting to flatten out. Hopefully I see Dr. S tomorrow or Monday and he can tell me what's what as far as what to expect with this thing. Will it eventually just shrink down to nothing and disappear?

So last Thursday the radiation machine was broken. They sent me off to my nausea appointment while they tried to figure out what was going on with the machine. I ended up agreeing to get re-hydrated because Nurse Deb PROMISED to have me out in time, unlike stupid nurse Mary. So, I was hooked up to an IV for 4 hours and given some steroids. By the time I was done the radiation machine was still down so I ended up skipping radiation for the day.

I was back home with 10 minutes to spare before Kit arrived to whisk me off to the races. OMG. What a blast! That place is HUGE! I heard a commercial for it on the radio the other day and they said there's over 1500 slot machines in that place. I believe it! It goes on forever! So, they give you a $10 free voucher to start you off and off we went. I was on quite the streak. I managed to get all the way up to $188 on my $10 they gave me. This is on the penny slots, mind you. We tried a couple of nickel slots too but we stayed away from all of the more expensive ones. And of course I didn't quit on the high note of $188, I was having too much fun, but I DID end up walking out of there with $150 in my pocket. Woo hoo! Kit wasn't having very much luck. She was down $45 of her own money when it was getting close to the time we had to leave. We sat down at one more set of machines and my luck finally rubbed off on her. I think she ended up hitting the machine for ~$80-90! So she walked out of there with money in her pocket and her head held high too! It was a good day. Of course I didn't feel like I had gotten to see nearly as many of the machines as I had wanted to see so I snuck back down there the following day as well. I lost $85 in the few hours that I spent puttering around that place. That'll teach me. Ha! I now want to go back some time with baby doll. I think he'd get a kick hanging out for a few hours. It's fun to run around and see what different gimmicks the different machines have. There was one machine that I sat down at where I ended up winning 46 free spins. 46! That's a lot! You'd think with that many spins I would be racking up some serious cash!! Yeah, no. By the end of the 46 spins I had won $10.35. Sheesh. Okay, enough with the gambling, moving on to..........oh, poker night. More gambling. ;-)

Friday night was poker with the guys. For the first time ever, I did not have fun at poker. I thought it was just me because I was feeling a little under the weather that night but without me even saying anything, when baby doll and I got home, he commented that he didn't have nearly as much fun that night as he usually does when we play at my house. I don't think it was the location though. I think it's because JT and I fell down on the job. Normally I'm keeping track of the table and verbally nudging people when things stall and basically I try to keep the game moving. Well, without a voice, it was kind of impossible to do that! JT usually backs me up too and helps with keeping things moving along but he brought his girlfriend with him and he was totally distracted by her so he was less that useless in keeping those yahoos in line. I'm going to have to try to fix it. I went ahead and spent the $100 on that Verbally Text to Speech program that I've been using. I've been using the free version to test it out. The paid version is much nicer. Next poker game I'm going to have that program set up with the volume jacked up and I'll be once again giving verbal cues to players to see if I can keep moving things along. I don't want to lose poker as a fun pastime! That would SO suck!

Okay back to medical stuff. On top of rehydrating me and giving me steroids to help with the nausea, they also gave me a prescription for my BFF, Ativan. I thought it was an anti-anxiety med but I guess it's useful for nausea as well. So I've been using it as a backup here and there. Seems to be working although it might also be what's been zonking me out so bad lately. I went to bed at 7:00 last night. Didn't get up until 7:00 this morning. Buzzed out to radiation, buzzed back, tossed stuff in the crock pot for beef stew (Jamie's coming for dinner tonight!) and then went right back to bed for another couple of hours. Sheesh.

Joanna, the nutritionist, and I are still messing with my food. She put me on that high cal stuff last week which ended up causing SEVERE nausea. So it's out. Yesterday we started trying Jevity 1.5, I'm currently on Jevity 1.2. All seems to be going well. This is good because Jevity 1.5 will add an extra 500 calories into my diet every day which is a pound a week. Fingers crossed that we found a workable solution.

Turns out I don't need to put a new oven on my personal wishlist. Baby doll wants to buy me one for Christmas. Why? Because he's the best boyfriend ever, that's why. :-) We were out appliance shopping this past weekend and found one that we both love. We'll be going back again this weekend to pull the trigger on the purchase. I also want a new fridge. I found one at Sears that I've fallen madly in love with. It's more expensive than the oven though! And it's not even that fancy. I don't want an ice cube maker or anything fancy like that. I simply want a bigger fridge. The one I currently have was the smallest, cheapest one that I could find when I first moved into my house. Time for an upgrade.

That's all the excitement happening over here. Tomorrow I get to see Dr. M again who I haven't seen in a while. Oh! Which reminds me. I ate 1/2 cup of vanilla ice cream via my mouth the other night!! Granted I had to be laying down to do it and it tasted like crap but I was super happy to get the extra calories! And just the motion of eating some food like a somewhat regular person does me a world of mental good. :-)

Thursday, November 7, 2013

November 7

Okay, I'm falling behind again. What can I say, I'm trying to live what life I can rather than sitting around writing about it. :-)

Saw Dr. Mike and Dr. S last Friday AND again yesterday. On Friday my tumor was measuring 1.7 - 1.8 at different spots. Yesterday it was measuring 1.7 all the way around and it is no longer an angry looking red, it has faded to a regular pale skin color. Both doctors are very pleased with this. Dr. S said the only thing to watch for is my skin breaking open over the tumor. He said targeting it with as much radiation as he is, it's going to weaken the skin, and we all know what a hard time I had healing my neck incision after the first surgery in August.

Dr. S was not happy with how little I can open my mouth. He asked me if I've been working with Michelle, the speech therapist, at all, on stretching exercises. I told him no. It's funny that he mentioned it though because I've been wondering the same thing. I had a hard time getting my toothbrush into my mouth the other day and that is simply unacceptable. I'm thinking I should ping Michelle and find out what the game plan is supposed to be with her. Last I knew, we were going to wait for the treatments to be done but if my mouth closes up any more, I don't want to wait that long.

At the end of the appointment yesterday Dr. S took my hands in his and told me that I'm doing a fantastic job taking care of myself and that he's proud of me and I should keep up the good work. Seemed kind of odd. I think that other people in my situation tend to let themselves go and wallow in the valley of despair whereas I flounce in, fresh from the shower, smelling all yummy with my Bath and Body Works lotion, hair all shiny and clean, dressed up in my cute clothes, baking treats for everyone. I think I've sent poor Dr. S into a tailspin. He thanked me yesterday for the pecan bars. He said that he's going to bring me in some Indian sweets to try. I mimed to him that I can't eat, everything goes through the PEG. He was like, oh yeah, I guess you can't taste it if it's going through the PEG. Silly man.

The nausea has been awful. I had forgotten what a horrible sensation it is to feel like you're going to toss cookies all the time (without actually tossing them, mind you). It really sucks. Tuesday was my worst day yet with the nausea. I mentioned it to Nurse Carol yesterday so she sent off a note to Nurse Mary and I now have a 9:30 appointment to talk to someone about it today. I can't wait to see how this goes. Nurse Mary royally pissed me off via e-mail yesterday. When I talked to Nurse Carol about the nausea she said that the chemo peeps could drip something into me on Mondays that should help control things a little better and/or there are other meds they could try on me. Then Nurse Mary e-mails me and starts talking about how she wants to hook me up to an IV today and rehydrate me. First of all, I don't think I'm dehydrated. Second of all, I told her that was fine so long as I'm out of the hospital by 1:00. (Today's the race track with Kit. Hell if I'm going to miss out on that!!) Mary e-mails back that they can TRY to have me out by 1:00. I e-mailed her back and said if they couldn't have me out by 1:00 then I won't agree to being rehydrated. She e-mailed back "Let's take it one step at a time.". She seems to think we're negotiating. If she continues to be under such a false assumption today then I'm going to have to set her straight. Once again, I feel like I'm dealing with someone who has a god-complex going on. What is it with these medical people?

Last Friday my scale dipped again. I went down to 105.2. I immediately bumped myself up to 8 cans of food a day instead of 7 and I sent off an e-mail to Joanna, the nutritionist. She had talked about putting me on a higher calorie food. I pulled the trigger for it. So she gave me some samples of it on Monday. She wants me to try it first before we go ahead and order an entire month's supply from Upstate. She said that the higher fat content can cause an upset tummy in some patients. So I started the new food on Tuesday which was the day that I had my worst day of nausea. I took myself back off the fatty food. Tuesdays and Wednesdays are always bad nausea days after chemo so it doesn't seem fair to test the food on those days. I'm now going to wait until tomorrow and give the new food another try. Hopefully it wasn't what was causing my nausea because I could really use those extra calories!

I don't know what was up with my PEG early last week when it hurt so bad for those couple of days but it magically got better on its own and I haven't had a problem since.

I still have a lot of extra mucus happening but I've been reading the e-mail digest from the lary forum and it turns out it's normal for that to start happening at this time of year. Everyone is complaining about extra mucus right now. Who knew such things were cyclical??

I think that's all I have on the health front. I'm still not losing any hair, thank goodness. I guess my neck skin is finally drying out a little. Nurse Carol made a comment about it yesterday and gave me yet another tube of Aquaphor. I really need to put some on! My mouth is burning, burning, burning. I have 3 different mouth rinses now that Dr. Mike gave me to try to help alleviate the discomfort. Again, I should start using the darned things.

Okay, let's talk about fun stuff.

Today is the big racetrack day with Kit. I have to hit the bank and get some moulah. Here's hoping I don't come home totally empty handed!!

Yesterday some of the guys came over for euchre lunch. It was H and I against JT and RayB. Yeah, H and I beat them all 3 games. Ha! Suckas! Meanwhile I made them chili and cornbread along with a boston cream cake. Seemed to go over well. Instead of flowers, or a wreath, they actually brought me a $90 gift card for Wegman's. How bleeping sweet is that?? It's already burning a hole in my pocket. My friend Sandi posted a recipe called Turtle Fudge on Facebook that I totally want to try. I need to buy marshmallow cream and milk chocolate chips in order to give it a whirl though.

Baby doll had me shaking my head the other day. I told him about the new recipe system. I then made him a new recipe. An appetizer called tomato/bacon cups. As he was munching on them I asked him what he thought. He said they were good and he liked them. I said okay, just like, not love? And he said well, let me eat a couple more and I'll let you know. Yeah, right. That's not how it works. You shouldn't have to eat 6 of them to figure out if you like them or love them, for goodness sake. Meanwhile, he came back and said he loved them and felt they should get a star. Too little, too late, if you ask me. I told him that he could never be a judge on a reality show because he would want to keep everyone, he'd never vote anyone out of the house, or off the island. He's Mr. "Let's keep everyone happy.". Sheesh. The recipe is in the book. It is NOT getting a star. The only way a recipe can get a star from here on out is if the sounds of mastication from the kitchen table get so loud they border on disgusting, and if I see him pick up the plate and lick it clean. None of this asking him to reasonably rate something. I'm simply going to glean it from the physical cues of his eating habits. :-)

Allrighty, that about does me for today. I have an hour to kill before it's off to radiation. I'm going to go water my flowers in my Animal Crossing game and see if anyone new has moved into my town. Man, I love my Wii.