October 2

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

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

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

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

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

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

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

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

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

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

Anyway, skinny on radiation treatments:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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