So I ran out of pain meds at noon on Wednesday and discovered that my insurance wouldn't pay for the refill until Thursday. No biggie. I figured I would just stop by and grab it after my appointments yesterday. Well. I underestimated how much I'm liking my Roxicet. I did NOT have a very good night and at 8:00 yesterday morning I was online Googling the Strong pharmacy hours. Turns out they open at 8:30 in the morning. I was in my car at 8:22 and was injecting meds into my stomach in my car at 9:02 yesterday morning. I feel like I should be ashamed to be admitting such a thing but whatever. I recently started watching Breaking Bad and all I can say is hey, at least I'm not out cooking meth!!
Speaking of Breaking Bad, what an awesome yet disturbing show! For those of you not familiar with it, this school teacher, specifically a chemistry teacher, finds out he has incurable lung cancer and not long to live. In an effort to provide for his family after he's gone, he gets it into his head to cook meth and sell it. Man, the trouble this guy gets into. And the format of the show is seriously cool. Not every episode but some of the episodes start with some crazy scene, like Walt, the teacher, walking away from a blown up building with his head shaved, and a bloody bag full of cash in his hand. Then they cut back to where the storyline left off and they slowly build back up to that particular scene by the end of the episode. It's crazy to see exactly how he got into that messed up situation! I love it! I'm also finding the show really disturbing. I had my appointment with the chemo doc on Wednesday. Wednesday night I came home and I watched an episode where Walt meets with a chemo doc and hearing the chemo doc talk about all the potential side effects, sometimes word for word what my chemo doc told me, was freaking me out!! Then in the next episode, Jesse, the kid who helps Walt cook the meth, tells Walt that his aunt had chemo and that she said putting an ice pack on her head during the treatment helped with the hair loss. Do you think that's true?!? Should I go buy some ice packs right now!? And Walt's chemo doc told him that he could experience nausea but they had meds that usually keep it under control. That's exactly what my doc said as well. Then, the next thing you know, Walt is in the bathroom at school every day puking his guts out! I was SO bummed to see that! So, do the meds not work or are they just trying to dramatize things for a TV show?? Ugh. I don't know if I should continue watching the damn show. I just finished season 1 last night.
Okay, I'm going to tell you some of the sundry stuff that I didn't get to the last time I posted and then I'm going to summarize my three doctors appointments for you.
First of all, I sneezed for the first time in my new body. I had reported that vomiting is much easier with my new getup, well let me tell you, sneezing SUCKS. It's like this whole body glitch that happens but I don't have a nose to expel air through forcibly so there's no real closure to the sneeze. I didn't feel relieved afterwards. And I'm thinking this might be why I sneezed 9 times in a row instead of just 2-3. It was messed up to say the least. I always thought sneezes originated in the nose. It would seem that's not always the case.
I did, indeed, do a shot of Bacardi rum the other night. It was not that great of an experience. I ended up with a really weird aftertaste tickling the back of my throat and within 20 minutes of injecting the shot into my stomach, I was fast asleep. At least now I know what the cure is for those nights when I'm up at some crazy hour and can't fall back asleep. Like Tuesday night, I was up at 1:00 am and decided to clean out all my kitchen drawers. I then went back to bed at 2:15. What the hell is up with that?
I got my first 'big' bill from all this medical crap. $550. Bleah. I feel like I should start an Excel spreadsheet and verify that my insurance company only makes me pay up to $4,000 out of pocket for the medical expenses. It always feels like I pay a heck of a lot more than that.
The poker boys are going to be bummed. I believe I have finally decided to turn my spare bedroom into a dressing room. It just seems like such a fun project to map out! I can have a wall of scarves, a wall of hats, and a wall of purses. I can do a shoe cubicle right in the middle of the room. I can pick up a cute little vanity where I can mess with hair, makeup, jewelry, etc. I could totally make it a girly girl room!
I have been a cooking maniac for my man. This week was an appetizer recipe for crab cups that came out super yummy and a main meal recipe for champagne shrimp and pasta. It was good but nothing to rave about according to babydoll. The winner of the week, and probably the entire year, was last night. I found a recipe for those chocolate lava cakes. The recipe is kind of crazy. It calls for 3 eggs and 6 egg yolks! Yikes! But I made them last night and I swear babydoll almost fell into a coma of delight. He could not stop talking about how good they turned out. The entire time he was eating it he kept sighing and mmming and I don't think he even realized he was doing it! So, that recipe is not only a keeper but I'm going to have to build a shrine for the damned thing. :-)
Did I mention that babydoll signed me up for a football pool? Yeah me, the chick who eschews all things sports related. Well let me tell you, I've been totally sucked in. I spend like an hour every week going through, doing research, and trying to figure out what teams to pick. It's ridiculous! And I would like Sam and Kunkel to know that I pick Dallas and Seattle every single week in deference to their hubbies passions. No clue why, it just feels right.
Okay, enough rambling about the fluffy stuff. Time to get to the meat of all my appointments yesterday. I went to my 1:00 with Dr. M with two pages of questions! So here are some highlights from that:
Dr. M doesn't know what to make of the weird lump on my neck that Dr. S pointed out. He said it doesn't feel like a tumor but even if it is, he's going to let the radiation treatments take care of it. Which by the way, he said that he's going to let Dr. K and Dr. S know that treatments can start immediately. He feels that I'm healed up enough. So for the weird bump, he said if it ends up getting bigger or becomes bothersome, to let him know and they can reevaluate whether to remove/biopsy it.
Dr. M approved me getting a port placed for the chemo treatments so long as it's on my right side away from my pec surgery. I will be getting the port placed on Monday. And I was just interrupted typing this blog by a phone call from the radiation doc's secretary. They want to fit me for my radiation mask at 8:00 on Monday. I can't be in two places at once for crying out loud, don't they have access to all of my appointments?? I just sent a note to babydoll asking him to call them back and reschedule that one. Sheesh.
Dr. M and I got into it a little bit about me not having all that interesting info about my cancer and it's progress. He claims he told me about it after the surgery. Well great, I don't even remember the first day and a half after the first surgery, is that when he imparted that info?? He said it doesn't change anything that we're doing anyways so he doesn't see why it matters. That pissed me off a little. It matters because I'd like to know the deets of my health, thank you very much. Anyway, supposedly there wasn't anything else I needed to know. I asked him what my actual survival rate is estimated at with the hot mess that is what I call a body nowadays. I guessed 25%, he said the honest number is between 20-30% chance of survival. He, of course, followed that up with how hopeful he is and all his normal glass half full blah, blah, blah. I told him I'd let him be the hopeful one while I was the realistic one who has shit I need to get done and it's good to know I'm likely working with a shortened timeline. He said that he's had patients in my same sitch that have lived another 10-20 years and then others who have checked out within 6 months. So, I think I'm going to go with a year and plan my "shit" with that schedule in mind. This means I really need to get moving on this damn book you peeps want me to write! :-)
I expressed my concern about my shrinking stoma. Dr. M had told me I could take my OSL out during the day and only wear it at night. I told him that I sometimes take it out for an hour or two but that's it because I can visibly see my stoma shrinking right before my eyes. A few weeks ago the OSL went in with some room to spare around all sides, now I have to use a little force in order to get it to fit back into the hole. It turns out this is normally and that the stoma should eventually stabilize. It takes anywhere from 3 months to a year to stabilize. JoAnn showed me how to use some pincher tools to fold the OSL tube in half and then in quarters to make it easier to slide into the stoma rather than me using force to push it in. So I guess this happens to everyone. I asked if they ever have to go in and re-open a stoma. They said rarely but yes. Yeesh. I'll be having nightmares about that now, thank you.
The fact that vomit came out of both my mouth and my stoma last weekend was probably due to both the hole in my throat where the speaking valve is missing as well as the fact that there's still a small hole between my mouth and my neck, according to Dr. M. He was more concerned that I was vomiting. I told him that I made the mistake of taking all my vitamins on an empty stomach and that I would not be repeating that again. Ever.
I complained about looking like a caricature with my huge head and tiny body. I thought the chipmunk cheeks would be gone within a month or two of the original surgery. No clue where I got that idea from, I guess it's likely to take a year for my chipmunk cheeks to go down. It's kind of like that bullfrog thing that I had going on last year with all the fluid collecting on my neck under my chin.
So, that was about that for my 1:00 appointment. There were a few other questions tossed in there but nothing really exciting to report. Kit and I then moved on to my 2:00 appointment.
My 2:00 appointment was with Dr. L. She's the one who does the PEG replacements. She got the measurements from my PEG and now has the low profile PEG on order for me from Upstate. I guess it will get delivered to my house at which point I bring it in and she will place it for me. It seems like an easy and painless procedure. She sucks the water out of the little balloon that is currently holding the PEG inside my stomach, slips the old PEG out, slips the new one in, and fills the new balloon with water to hold it there. I showed her my poor little tab that is starting to rip and my lovely job with electrical tape. She ended up adding a new 'end' to my PEG to bypass the ripped stopper. It's kind of huge. I feel like a human tinker toy. Luckily, it's only until 10/16 which is when I'm scheduled to get the low profile PEG placed. Which by the way is called a Mic-Key. Here's pic of my tinker toy:
And not for nothing, but I have it resting on my leg. Doesn't it look like it's resting on my arm in this picture?? That's how damn skinny my stupid chicken bone legs are! Speaking of which, I weighed in on the doc's scale at 115 on Wednesday. Yesterday it said 106. The nurse and I both freaked out. So she made me get off and reset the scale. I then weighed in at 111. She was still suspicious so we went down the hall to a different scale. 111 again. 4 pounds in one day?? WTH? And I was wearing the same shoes as the day before. And jeans and a sweater instead of jeans and a shirt which should have been heavier! Whatever. One of the other questions on my list for the doc was whether they bumped my script up yet to 7 cans. JoAnn verified that they had and she called Upstate while I was there. They said they will make a second delivery of the extra cans next week. Phew! Hopefully I can start putting some meat on these bones!!
After that I had a 3:00 appointment to get an ultra sound done on my legs so they could rule out blood clots for my swollen ankles. Turns out it takes 45 minutes to accomplish this. Seems a bit excessive but whatever. Meanwhile my PEG was cramping like crazy because I was starving at this point. I was running WAY behind schedule when Kit cam to pick me up for my day of fun and I only got in about half of my noon feed before we had to rush out the door. Anywho, Kit ran to the cafeteria to get some milk and then helped me 'eat' a CBD while the ultrasound was going on. The tech chick that was doing the ultrasound was super sweet and had no problem pausing for 5-10 minutes so that I could inject some food into my cramping belly. Thank goodness for Kit! I'd be a miserable wreck without that woman coaching me through these marathon days of doctor appointments! I like that they try to schedule them consecutively to save me trips to the hospital but man, it's seriously exhausting spending 3-4 hours running from one doctor to the next.
So those are my stories for now. For my birthday, babydoll had his coworker and father install a humidifier on my furnace. They were here this morning and just left 20 minutes ago. Stephanie from VNS will be here around 11:30 this morning for one last visit and then I'm free the rest of the day until babydoll's arrival at 6:30. Phew! Thank goodness the weekend is here. I'm in need of some down time! I hope everyone is enjoying the more temperate weather we've been having.....have a wonderful weekend!
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