Have I mentioned that I have two doctors in my life that I have a total girl crush on? One is my primary doctor, Dr. K because she's on-time for her appointments, talks to me like I'm a real person, pays attention to the details, sincerely seems to care about me as a person, and is simply a sweetheart of a human being. The other doctor is the wife of a guy I went to school with back in the day. She and I ended up becoming Facebook friends a few years ago and through FB messaging, we have made a connection and built a friendship that I truly treasure. You have seen me reference her as Dr. Karen in previous blogs.
I mention this because she has once again given me some peace of mind. I hadn't realized how much the Vicodin dosage thing was bugging me until I received the following e-mail from her this morning. She passed along some great info that I thought other peeps would likely be interested in too so here it is.
First... acetaminophen: the MDD (maximal daily
dose) per the PDR and FDA is 4000 mg. This is the hard line/do not
cross daily max. BUT... that's like once in a while. When peeps are on
the meds chronically we PREFER to limit to around 3000 mg a day so as
not to tax the liver continuously. My best advice is to shoot for 3000 but
if you go to 4000 that is nbd.
Second.... narcotics. This is all
kind of new and different. Effective 8/27/13 NYS is putting into
effect something called ISTOP legislation. In order to prescribe ANY
controlled substance (which includes narcotics, anxiety meds, sleeping
pills, meds for ADD) the PRESCRIBER (aka doctor) has to log onto a state
web site, verify if there are other controlled scripts being written
for that patient elsewhere and DOCUMENT in the chart that s/he looked
this up. If that is done then a 30 day supply can be written. (earlier
this year they already changed that there can be NO refills on Vicoden,
we used to be able to write for 1 refill and they added other meds to
the "controlled" list.) If this is NOT done then the max amount of meds
you can write is for 5 days. There are a couple of exceptions but you
get the general idea. So... Dr. C is going the easy way and doing the 5
days and making you pick it up. I suspect a lot of people will do this
because they don't want to be bothered with the verification.
Friday, August 9, 2013
August 9
The date is set. Surgery officially happens on Thursday, August 22nd.
My immediate feeling was relief. Finally. We're once again moving forward. There is a day on the horizon when the progress of this tumor will be halted. I can once again start planning things and now have a completion date to work towards. I called the insurance company to start the short term disability paperwork. I gave my boss the head's up so that they can move a little faster in finding a long term temp. I started packing the bag I'm going to take with me to surgery as well as the one that somebody will be bringing me after the surgery. Let's get this show on the road so that I can begin the long journey back to recovering as much of myself as will be possible or, let's say it together people, reaching my new norm.
The next feeling in line was fear. I now have the date of when my life forever changes. Again. How hard is it going to be this time around? I keep trying to pep talk myself. I made it through last summer and 6 months after surgery I was training for a 5k, traveling to Florida, as well as dating an incredibly hot man. The devil on my other shoulder keeps pointing out some not so fun facts though. Less than 5% of patients have cancer come back in an area that has already gone through radiation. Healing takes at least 4x longer in areas where radiation has occurred. This is on top of this particular surgery being much more complex with a larger 'flap' being installed. One of my surgeons actually felt that letting the cancer simply kill me was a valid option. My body is still 'run down' from the last go around with this evil beast. And on, and on, and on. I keep knocking the little bastard off my shoulder and telling him to get lost but he creeps back up every time I'm looking the other way. <sigh>
Meanwhile, the benefits meeting at work went really well. Currently, my company has no plans to 'can' me for being out for 6 months, FMLA or not. Should I require longer than 6 months, they will then need to reevaluate the needs of the company.
So, looking at the worst case scenario, if I DO lose my job, I can continue my health care coverage either through COBRA or through some new Obama Care program that's coming down the chute. The guy at the corporate office wasn't so sure about my life insurance. Normally it could roll over somewhere else but he's not sure since there is a pre-existing health condition. He's looking into it for me.
Looking at the best case scenario, if after 4 months the doctor tells me that I can work from home part time, for example 2 days a week a) short term disability allows for that. I would get paid 100% of my salary for 2 days from the company and 75% for the other 3 days from short term disability b) the company already gave me a laptop last year for working from home which I still have and c) my boss told me that he doesn't want me sacrificing my health in any way, shape, or form but the moment I feel up to coming back to work, even if it's remotely and only a day or two a week, he will be overjoyed to have me back. :-)
I never did hear from the swallowing/speech therapist this week. On the bright side, I have now figured out how not to choke on liquids so I'm okay not meeting with her. On Monday at 8:00 am I have an appointment with the reconstructive surgeon. My coworker/friend, H, has agreed to go with me and be my second set of ears for whatever information will be passed along. He hasn't been dragged to anything yet, other than bringing me numerous milkshakes last summer when I was recovering, so it's his turn to step up and be a part of this adventure. I told him to start thinking of questions.
The questions currently in my ever present notebook are: Approximately how long will I be in the hospital? How long will the surgery take? When you split my jaw in the front, will my teeth be safe? (Do they get chipped, will they go crooked or fall out from trauma?) Do you actually break the jaw where it hinges to my skull or does it simply unhinge once you've cut down the middle? On the day of surgery it will have been 6 weeks since the PET scan. Will another PET scan be done shortly after surgery to make sure the cancer didn't spread during that time? Last year I didn't need any pain meds at all after surgery although they kept checking to see if I wanted morphine. But honestly, I wasn't in any pain. I was told that people with head and neck surgeries often don't feel any pain (although why that held true for my arm where they took the flap from as well, is beyond me). Is that going to hold true for this surgery too? Or because it's more complicated, will there be pain afterwards this time around?
Baby doll has been trained on how to pay my bills and how to update my blog. Unfortunately he will be in Myrtle Beach with his daughter the day I go in for surgery so my best bud, JT, will once again chauffeur me over there. If he really wants to get out of work this year, I might let him come sit in the waiting room with me this time, but no promises. JT will also be in charge of this blog for the first 3-4 days of my hospital stay since he did such an outstanding job last year. Then he goes out of town and baby doll comes back into town at which point he will take over. He is hoping to see me Sunday, 8/25 when he rolls back into town but if it's too late in the day then he's likely to swing by Monday morning before work to say 'hi'. He will then be in a position to keep the blog updated from there.
When I registered as a new patient at Strong, they asked me who they were allowed to give my health information out to. I asked if there was a limit and they said no. So, on the fly, I authorized JT, baby doll, my boss guy, and my mom. I'm going to see if I can type out a more comprehensive list and hand it over to them so that others, like Kunkel or Sammy, can call the hospital to get the scoop if they so desire.
Okay, I think that's all the health stuff for now. Other than thanking all that is good out there in the world for pain killers. Although I just took them at 1:30 when my insomnia first hit and it's only 3:45 now and my ear is already throbbing. Yet another reason for feeling relieved that the date is set. They will soon be removing the cause of my pain!
Fun stuff!
Going to the movies with Kit was a blast! We saw The Heat with Sandra Bullock and Melissa McCarthy. Funny, funny movie. A lot more violent than I expected too. We both enjoyed it immensely! We stopped at Abbott's afterwards and had a good visit.
I took Tuesday off from work and went to the PGA with my sexy and charming man. It was a gorgeous day! We sat in our folding chairs on hole #17, drank a couple of beers, and watched a bunch of professional golfers practice their shots. Good stuff! We then hopped in the car and drove out to Oswego to visit Vic and T. I brought the fixings for dinner with me because any time I have a captive audience to force food on, I'm all over that! I made stuffed mushrooms which were a huge hit with the boys, I brought some chili that I had done up in the crock pot the day before, and I baked some chocolate chip cookies for dessert. We then sat out on their deck, had an adult beverage, and shot the breeze while absorbing the last of the beautiful day. Yet another good visit. :-)
Wednesday I took the afternoon off from work to go thrift store shopping with Elvisa. OMG. So.much.fun! We only made it to two stores but I collected a huge haul! I spent $125 and pretty much purchased an entire new wardrobe in size 2/4. So excited! And I forget how much fun it is to go shopping with someone else. El and I modeled clothes for each other, made fun of some of the crazier items we found, and chit chatted in between. Awesome!
Last night I subbed in on Kunkel's golf league because her partner couldn't make it. I couldn't hit the side of a barn with my ball last night but it was great seeing Kunkel outside of work. I forget exactly how inappropriate and mouthy that little, Italian, sexpot is! She was killing me!
Tonight is a quiet evening at home with the love of my life. I'm making him one of his fave dinners, cajun shrimp with mardi gras rice and I plan on doing a whole bunch of snuggling. I need to start storing up as much affection as I can! Tomorrow morning we get to sleep in and then kick off a late morning with bacon, eggs, toast, and mimosas. Then at 1:00 we will be going on an Adventure Segway tour. Very cool.
I suppose I should go crawl back into bed and see if my body is ready to sleep yet. I'm going to be dragging when my alarm goes off less than 3 hours from now!!
My immediate feeling was relief. Finally. We're once again moving forward. There is a day on the horizon when the progress of this tumor will be halted. I can once again start planning things and now have a completion date to work towards. I called the insurance company to start the short term disability paperwork. I gave my boss the head's up so that they can move a little faster in finding a long term temp. I started packing the bag I'm going to take with me to surgery as well as the one that somebody will be bringing me after the surgery. Let's get this show on the road so that I can begin the long journey back to recovering as much of myself as will be possible or, let's say it together people, reaching my new norm.
The next feeling in line was fear. I now have the date of when my life forever changes. Again. How hard is it going to be this time around? I keep trying to pep talk myself. I made it through last summer and 6 months after surgery I was training for a 5k, traveling to Florida, as well as dating an incredibly hot man. The devil on my other shoulder keeps pointing out some not so fun facts though. Less than 5% of patients have cancer come back in an area that has already gone through radiation. Healing takes at least 4x longer in areas where radiation has occurred. This is on top of this particular surgery being much more complex with a larger 'flap' being installed. One of my surgeons actually felt that letting the cancer simply kill me was a valid option. My body is still 'run down' from the last go around with this evil beast. And on, and on, and on. I keep knocking the little bastard off my shoulder and telling him to get lost but he creeps back up every time I'm looking the other way. <sigh>
Meanwhile, the benefits meeting at work went really well. Currently, my company has no plans to 'can' me for being out for 6 months, FMLA or not. Should I require longer than 6 months, they will then need to reevaluate the needs of the company.
So, looking at the worst case scenario, if I DO lose my job, I can continue my health care coverage either through COBRA or through some new Obama Care program that's coming down the chute. The guy at the corporate office wasn't so sure about my life insurance. Normally it could roll over somewhere else but he's not sure since there is a pre-existing health condition. He's looking into it for me.
Looking at the best case scenario, if after 4 months the doctor tells me that I can work from home part time, for example 2 days a week a) short term disability allows for that. I would get paid 100% of my salary for 2 days from the company and 75% for the other 3 days from short term disability b) the company already gave me a laptop last year for working from home which I still have and c) my boss told me that he doesn't want me sacrificing my health in any way, shape, or form but the moment I feel up to coming back to work, even if it's remotely and only a day or two a week, he will be overjoyed to have me back. :-)
I never did hear from the swallowing/speech therapist this week. On the bright side, I have now figured out how not to choke on liquids so I'm okay not meeting with her. On Monday at 8:00 am I have an appointment with the reconstructive surgeon. My coworker/friend, H, has agreed to go with me and be my second set of ears for whatever information will be passed along. He hasn't been dragged to anything yet, other than bringing me numerous milkshakes last summer when I was recovering, so it's his turn to step up and be a part of this adventure. I told him to start thinking of questions.
The questions currently in my ever present notebook are: Approximately how long will I be in the hospital? How long will the surgery take? When you split my jaw in the front, will my teeth be safe? (Do they get chipped, will they go crooked or fall out from trauma?) Do you actually break the jaw where it hinges to my skull or does it simply unhinge once you've cut down the middle? On the day of surgery it will have been 6 weeks since the PET scan. Will another PET scan be done shortly after surgery to make sure the cancer didn't spread during that time? Last year I didn't need any pain meds at all after surgery although they kept checking to see if I wanted morphine. But honestly, I wasn't in any pain. I was told that people with head and neck surgeries often don't feel any pain (although why that held true for my arm where they took the flap from as well, is beyond me). Is that going to hold true for this surgery too? Or because it's more complicated, will there be pain afterwards this time around?
Baby doll has been trained on how to pay my bills and how to update my blog. Unfortunately he will be in Myrtle Beach with his daughter the day I go in for surgery so my best bud, JT, will once again chauffeur me over there. If he really wants to get out of work this year, I might let him come sit in the waiting room with me this time, but no promises. JT will also be in charge of this blog for the first 3-4 days of my hospital stay since he did such an outstanding job last year. Then he goes out of town and baby doll comes back into town at which point he will take over. He is hoping to see me Sunday, 8/25 when he rolls back into town but if it's too late in the day then he's likely to swing by Monday morning before work to say 'hi'. He will then be in a position to keep the blog updated from there.
When I registered as a new patient at Strong, they asked me who they were allowed to give my health information out to. I asked if there was a limit and they said no. So, on the fly, I authorized JT, baby doll, my boss guy, and my mom. I'm going to see if I can type out a more comprehensive list and hand it over to them so that others, like Kunkel or Sammy, can call the hospital to get the scoop if they so desire.
Okay, I think that's all the health stuff for now. Other than thanking all that is good out there in the world for pain killers. Although I just took them at 1:30 when my insomnia first hit and it's only 3:45 now and my ear is already throbbing. Yet another reason for feeling relieved that the date is set. They will soon be removing the cause of my pain!
Fun stuff!
Going to the movies with Kit was a blast! We saw The Heat with Sandra Bullock and Melissa McCarthy. Funny, funny movie. A lot more violent than I expected too. We both enjoyed it immensely! We stopped at Abbott's afterwards and had a good visit.
I took Tuesday off from work and went to the PGA with my sexy and charming man. It was a gorgeous day! We sat in our folding chairs on hole #17, drank a couple of beers, and watched a bunch of professional golfers practice their shots. Good stuff! We then hopped in the car and drove out to Oswego to visit Vic and T. I brought the fixings for dinner with me because any time I have a captive audience to force food on, I'm all over that! I made stuffed mushrooms which were a huge hit with the boys, I brought some chili that I had done up in the crock pot the day before, and I baked some chocolate chip cookies for dessert. We then sat out on their deck, had an adult beverage, and shot the breeze while absorbing the last of the beautiful day. Yet another good visit. :-)
Wednesday I took the afternoon off from work to go thrift store shopping with Elvisa. OMG. So.much.fun! We only made it to two stores but I collected a huge haul! I spent $125 and pretty much purchased an entire new wardrobe in size 2/4. So excited! And I forget how much fun it is to go shopping with someone else. El and I modeled clothes for each other, made fun of some of the crazier items we found, and chit chatted in between. Awesome!
Last night I subbed in on Kunkel's golf league because her partner couldn't make it. I couldn't hit the side of a barn with my ball last night but it was great seeing Kunkel outside of work. I forget exactly how inappropriate and mouthy that little, Italian, sexpot is! She was killing me!
Tonight is a quiet evening at home with the love of my life. I'm making him one of his fave dinners, cajun shrimp with mardi gras rice and I plan on doing a whole bunch of snuggling. I need to start storing up as much affection as I can! Tomorrow morning we get to sleep in and then kick off a late morning with bacon, eggs, toast, and mimosas. Then at 1:00 we will be going on an Adventure Segway tour. Very cool.
I suppose I should go crawl back into bed and see if my body is ready to sleep yet. I'm going to be dragging when my alarm goes off less than 3 hours from now!!
Monday, August 5, 2013
August 5 - Part II
First of all, I'm baffled about this whole narcotics prescription thing. Dr. C said he could only prescribe 5 days at a time so the scripts he was writing were for 50 pills at a time. Today, Nurse Jo Ann had a resident make out a prescription for me. It was for 120 pills. WTH? I thought Dr. C said the 5 day thing was a law..........I really don't get it.
On top of that, Dr. C told me not to take more than (10) pills a day which would total to 3,250 mg of acetaminophen. Acetaminophen being the stuff that poisons your liver. Meanwhile, my primary care doc, Dr. K, told me that she would prefer that I limit myself to 3,000 mg a day. The script I picked up today is now telling me that I can take up to (12) pills a day which is close to 4,000 mg a day. Once again, I don't get it. I would think there would be some hard and fast rules in place when it comes to dosage amounts.
And lastly, it would seem that Nurse Jo Ann jumped the gun in telling me that my surgery was tentatively scheduled for next week. I came home just now to a message on my machine from Michelle (not sure who she is in the org chart). My surgery is currently scheduled for Monday, 8/26. There's a possibility that it could get pulled in to Thursday, 8/22, but Michelle says that it's not likely. So, I still have 3 weeks of freedom left before my worldview once again shifts!
On top of that, Dr. C told me not to take more than (10) pills a day which would total to 3,250 mg of acetaminophen. Acetaminophen being the stuff that poisons your liver. Meanwhile, my primary care doc, Dr. K, told me that she would prefer that I limit myself to 3,000 mg a day. The script I picked up today is now telling me that I can take up to (12) pills a day which is close to 4,000 mg a day. Once again, I don't get it. I would think there would be some hard and fast rules in place when it comes to dosage amounts.
And lastly, it would seem that Nurse Jo Ann jumped the gun in telling me that my surgery was tentatively scheduled for next week. I came home just now to a message on my machine from Michelle (not sure who she is in the org chart). My surgery is currently scheduled for Monday, 8/26. There's a possibility that it could get pulled in to Thursday, 8/22, but Michelle says that it's not likely. So, I still have 3 weeks of freedom left before my worldview once again shifts!
August 5
I have no health updates to report but I think I may be overburdening baby doll with some of my more macabre thoughts. So I want to get back into the practice of using this blog as a therapeutic journaling activity for myself to purge some of my craziness. ;-)
I left a message for Nurse Jo Ann this morning letting her know that I will be running out of Vicodin today. If she doesn't call back by early afternoon then I'm going to have to research other avenues for getting some pain meds. Cue the joke about driving slowly around my neighborhood with my car alarm going off to let the local drug dealer know that I'm interested in a purchase. ;-P Maybe Dr. K would be willing to keep me out of pain until my surgery.
I asked baby doll if he'd be willing to learn ASL with me. He said he had actually been thinking about that a while back. He was concerned that his messed up hand would prevent him from communicating effectively but then he realized he doesn't need to speak it, he just needs to understand it. So, he's in. Have I mentioned lately what an absolute sweetheart he is? I looked up some classes here in Rochester. There's a 10 week fall session starting mid-September. $90/person. That might be a little soon after surgery though. We may need to check back and see if they offer a winter session.
He also mentioned that he did some brief research on the PEG last week. The PEG being the permanent feeding tube that I will have implanted in my stomach. I decided that if he's brave enough to go do some research, then I should put my big girl pants on and do some research too. Unfortunately my big girl pants didn't prevent me from having a good cry last night after I got done researching. I keep telling myself that I thought my arm where they took the flap from, and my neck incisions, and my muffled talking were going to be horribly life altering as well, but I ended up getting used to my 'new norm' fairly quickly so I'm going to keep my fingers crossed that the feeding tube goes the same route. Meanwhile, depending on how much 'feed' I need on a daily basis, it looks like I will be saving quite a bit of money on groceries post surgery. I will only need to worry about feeding baby doll on the few nights a week that he's over. I think a fun challenge will be to continue trying new recipes, being the 'foodie' that I am, without being able to taste test them at all. Wouldn't it be awesome if I became a renowned cook who can't eat?! HA!
I took my tribunal out to lunch on Saturday to the Cheesecake Factory. It was a good time, everyone sharing stories, likes/dislikes, cracking jokes. I feel more than good about putting that group in charge of things. Jamie was telling a story about a mom who recently forgot that the tooth fairy was supposed to pay a visit to her kid and she freaked out and jumped on the internet to find out how to handle that situation. Sammy said she actually did that once with Leila too and she told Leila that the tooth fairy probably couldn't find the darned tooth due to how messy Leila's room was and that if she cleaned it, the tooth fairy would probably make a second attempt to claim the tooth. Sam's motto: "Never take responsibility if you can pawn it off on the kid". I can't tell you how hard this made me laugh. Sam is absolutely the best mother I know and she still manages to do it with flair and a sense of humor!
I've noticed that I've been trying hats on fairly often lately. Everywhere I go, if they have a hat section, I'm over in it, playing dress up. It just occurred to me this weekend why I might have a sudden interest in hats. If I lost more than 50% of my hair with 6 weeks of radiation, I can only assume that I can say goodbye to ALL of it when I start getting zapped with both radiation AND chemo. Now that I'm aware of the probable reason behind my hat fixation, I'm going to start looking at head scarves too. :-)
Our HR chickie set up a meeting for this Wednesday for us to have a conference call with the corporate office. I need to find out exactly how things work with me being out of the office for an extended period of time. I know that the FMLA will only protect my job for 12 weeks and then the company can feel free to fire me if I haven't made it back to work. I'd like to know what that means for my insurance benefits. Dr. M said the likely recovery period will be 4-6 months but could actually take up to a full year. If I lose my job, thus lose my insurance, what happens? This is what I should be finding out this week.
More practically speaking, if I lose my job I can see if I can cash out my 401k and pay off my mortgage. Then I can place an ad to find a roommate or two for my 4 bedroom house and their rent could cover the utilities, vet bills, my cell phone, and other sundry life costs. And eventually, I have to imagine that a job placement agency might be able to locate some part time, stay at home work for me.
Sam and I went to the Park Ave Fest on Saturday. I've been to parties during the festival but I don't think I've ever actually gone to the festival itself. It's pretty amazing! It's one and 1/4 miles long, both sides of the street, filled with food vendors, and crafts, and musicians, and not for profit organizations, and artists, and.......I can't believe I've been missing out on this for the past 15 years! Sam and I only made it about halfway down the entire thing before we decided we had better head back. And while there were a lot of the vendors that we see at the Lilac Festival every year, there were TONS of new vendors that I've never seen before! I went a little crazy buying stuff. I usually limit myself to one 'treasure' at the Lilac Festival. I bought myself 3-4 treasures as well as a few treasures for baby doll as well. Sheesh.
Yesterday was golfing with Sandi. It was a gorgeous day out and with all the rain that we've gotten this summer, the golf courses are simply beautiful. To make it even better, I was having a somewhat good day at golf and Sandi was having a somewhat bad day at golf so for once, I didn't feel like a total loser playing with her! Although even on her bad day of golf she had two chips on two different holes that went straight into the cup. The first one we didn't see because the green was on a hill and when we finally got up there, we were looking EVERYwhere for her ball before Sandi finally thought to look in the hole. Too funny! The second one we both got to see and it was a very pretty ball, and it gave her an eagle on that hole too. A total high five/happy dance moment!
And we interrupt my rambling with a surgery update. Nurse Jo Ann just called to let me know that I can pick up my prescription for Vicodin at the info desk in the surgery center around 2:00 today. She also said they have a tentative date for my surgery. She didn't want to give me the exact day because it could still be bumped. I told her that I just made plans to go to Seabreeze with my best friend from high school and her kids on Friday, 8/16. She said that I will potentially need to cancel that because they're definitely looking at a day the week of 8/12. Bummer about Seabreeze but yay for upcoming surgery! I'm going to have to get things wrapped up with my lawyer by the end of this week though. I don't want to go under the knife with any loose ends. Which reminds me, I still need to teach baby doll how to update my blog and pay my bills. That's going on the MUST do list for tomorrow!
So another benefit to the feeding tube is that I would think it's easy to maintain my weight. This means I can finally get rid of the (8) 35 gallon tubs of clothes that I currently have stored in the basement. I think I'm going to post a note on Facebook first to see if any of my girlfriends want to come get some free clothes, then I'll donate the rest to the thrift store for a tax write-off. And thank goodness Elvisa and I are going thrift store shopping on Wednesday. I tried on 3 pairs of pants this morning, all of which were swimming on me. I decided I had better hit the scale and see what the damage has been lately. I'm down to 111 pounds. No wonder I had to buy a size 2 pair of jeans at Eddie Bauer last weekend!
Okay, I think I'm about rambled out for the day. I'm going to start purging brain stuff more often so that it's not such a book next time. And now I'm off to pick up my Vicodin prescription.....
I left a message for Nurse Jo Ann this morning letting her know that I will be running out of Vicodin today. If she doesn't call back by early afternoon then I'm going to have to research other avenues for getting some pain meds. Cue the joke about driving slowly around my neighborhood with my car alarm going off to let the local drug dealer know that I'm interested in a purchase. ;-P Maybe Dr. K would be willing to keep me out of pain until my surgery.
I asked baby doll if he'd be willing to learn ASL with me. He said he had actually been thinking about that a while back. He was concerned that his messed up hand would prevent him from communicating effectively but then he realized he doesn't need to speak it, he just needs to understand it. So, he's in. Have I mentioned lately what an absolute sweetheart he is? I looked up some classes here in Rochester. There's a 10 week fall session starting mid-September. $90/person. That might be a little soon after surgery though. We may need to check back and see if they offer a winter session.
He also mentioned that he did some brief research on the PEG last week. The PEG being the permanent feeding tube that I will have implanted in my stomach. I decided that if he's brave enough to go do some research, then I should put my big girl pants on and do some research too. Unfortunately my big girl pants didn't prevent me from having a good cry last night after I got done researching. I keep telling myself that I thought my arm where they took the flap from, and my neck incisions, and my muffled talking were going to be horribly life altering as well, but I ended up getting used to my 'new norm' fairly quickly so I'm going to keep my fingers crossed that the feeding tube goes the same route. Meanwhile, depending on how much 'feed' I need on a daily basis, it looks like I will be saving quite a bit of money on groceries post surgery. I will only need to worry about feeding baby doll on the few nights a week that he's over. I think a fun challenge will be to continue trying new recipes, being the 'foodie' that I am, without being able to taste test them at all. Wouldn't it be awesome if I became a renowned cook who can't eat?! HA!
I took my tribunal out to lunch on Saturday to the Cheesecake Factory. It was a good time, everyone sharing stories, likes/dislikes, cracking jokes. I feel more than good about putting that group in charge of things. Jamie was telling a story about a mom who recently forgot that the tooth fairy was supposed to pay a visit to her kid and she freaked out and jumped on the internet to find out how to handle that situation. Sammy said she actually did that once with Leila too and she told Leila that the tooth fairy probably couldn't find the darned tooth due to how messy Leila's room was and that if she cleaned it, the tooth fairy would probably make a second attempt to claim the tooth. Sam's motto: "Never take responsibility if you can pawn it off on the kid". I can't tell you how hard this made me laugh. Sam is absolutely the best mother I know and she still manages to do it with flair and a sense of humor!
I've noticed that I've been trying hats on fairly often lately. Everywhere I go, if they have a hat section, I'm over in it, playing dress up. It just occurred to me this weekend why I might have a sudden interest in hats. If I lost more than 50% of my hair with 6 weeks of radiation, I can only assume that I can say goodbye to ALL of it when I start getting zapped with both radiation AND chemo. Now that I'm aware of the probable reason behind my hat fixation, I'm going to start looking at head scarves too. :-)
Our HR chickie set up a meeting for this Wednesday for us to have a conference call with the corporate office. I need to find out exactly how things work with me being out of the office for an extended period of time. I know that the FMLA will only protect my job for 12 weeks and then the company can feel free to fire me if I haven't made it back to work. I'd like to know what that means for my insurance benefits. Dr. M said the likely recovery period will be 4-6 months but could actually take up to a full year. If I lose my job, thus lose my insurance, what happens? This is what I should be finding out this week.
More practically speaking, if I lose my job I can see if I can cash out my 401k and pay off my mortgage. Then I can place an ad to find a roommate or two for my 4 bedroom house and their rent could cover the utilities, vet bills, my cell phone, and other sundry life costs. And eventually, I have to imagine that a job placement agency might be able to locate some part time, stay at home work for me.
Sam and I went to the Park Ave Fest on Saturday. I've been to parties during the festival but I don't think I've ever actually gone to the festival itself. It's pretty amazing! It's one and 1/4 miles long, both sides of the street, filled with food vendors, and crafts, and musicians, and not for profit organizations, and artists, and.......I can't believe I've been missing out on this for the past 15 years! Sam and I only made it about halfway down the entire thing before we decided we had better head back. And while there were a lot of the vendors that we see at the Lilac Festival every year, there were TONS of new vendors that I've never seen before! I went a little crazy buying stuff. I usually limit myself to one 'treasure' at the Lilac Festival. I bought myself 3-4 treasures as well as a few treasures for baby doll as well. Sheesh.
Yesterday was golfing with Sandi. It was a gorgeous day out and with all the rain that we've gotten this summer, the golf courses are simply beautiful. To make it even better, I was having a somewhat good day at golf and Sandi was having a somewhat bad day at golf so for once, I didn't feel like a total loser playing with her! Although even on her bad day of golf she had two chips on two different holes that went straight into the cup. The first one we didn't see because the green was on a hill and when we finally got up there, we were looking EVERYwhere for her ball before Sandi finally thought to look in the hole. Too funny! The second one we both got to see and it was a very pretty ball, and it gave her an eagle on that hole too. A total high five/happy dance moment!
And we interrupt my rambling with a surgery update. Nurse Jo Ann just called to let me know that I can pick up my prescription for Vicodin at the info desk in the surgery center around 2:00 today. She also said they have a tentative date for my surgery. She didn't want to give me the exact day because it could still be bumped. I told her that I just made plans to go to Seabreeze with my best friend from high school and her kids on Friday, 8/16. She said that I will potentially need to cancel that because they're definitely looking at a day the week of 8/12. Bummer about Seabreeze but yay for upcoming surgery! I'm going to have to get things wrapped up with my lawyer by the end of this week though. I don't want to go under the knife with any loose ends. Which reminds me, I still need to teach baby doll how to update my blog and pay my bills. That's going on the MUST do list for tomorrow!
So another benefit to the feeding tube is that I would think it's easy to maintain my weight. This means I can finally get rid of the (8) 35 gallon tubs of clothes that I currently have stored in the basement. I think I'm going to post a note on Facebook first to see if any of my girlfriends want to come get some free clothes, then I'll donate the rest to the thrift store for a tax write-off. And thank goodness Elvisa and I are going thrift store shopping on Wednesday. I tried on 3 pairs of pants this morning, all of which were swimming on me. I decided I had better hit the scale and see what the damage has been lately. I'm down to 111 pounds. No wonder I had to buy a size 2 pair of jeans at Eddie Bauer last weekend!
Okay, I think I'm about rambled out for the day. I'm going to start purging brain stuff more often so that it's not such a book next time. And now I'm off to pick up my Vicodin prescription.....
Friday, August 2, 2013
August 2
Okay, I called Jo Ann on Wednesday and told her I wanted to get the surgery scheduled. She told me that Dr. M was in surgery all day but that she had clinic with him on Thursday and could talk to him then. She said that I would hear back from her Thursday afternoon at the latest.
Wednesday, I got home from work and Jo Ann had left a message on my answering machine at 5:05 pm saying "Hi, I didn't want you to think we forgot about you, I spoke to Dr. M and he has already started looking at the surgery schedule. You will probably need to come in before then so that we can get consent forms signed. I will let you know next steps tomorrow after my clinic with Dr. M". This message was weird. Why would I think they forgot about me when I didn't expect them to call until the following afternoon? Whatever. On the up side, at least communication with this group is overkill rather than underkill.
Jo Ann called yesterday around 4:00. I have decided that she's definitely not a people person. She's a smarmy, insincere, know it all. I'm not looking forward to dealing with her from here on out. I'm actually inventing ways to NOT deal with her from here on out which is probably not in my best interests. Kunkel and I were wishing we could trade Dr. C's support team with Dr. M's support team and then we'd have the perfect group! But hey, you can't please all the people, all the time. :-)
News from that phone call, Dr. V is on vacation next week. He's the reconstructive surgeon. I have a pre-op appointment with him for Monday, 8/12 at 8:00 am. I'm the first smiling face he gets to see upon returning from vacay. :-) Jo Ann assures me that the week delay in seeing him, in no way delays my surgery date. She said she will probably also be setting me up for a physical where they will take my blood and all the usual pre-op stuff. She then asked if I had any questions.
I started telling her about my awful experience waking up with the trach after the last surgery. She interrupted me and started talking about I don't even know what. I interrupted her and continued on with my request that it be noted that Ativan would be appreciated after the surgery. At which point she got pissy, probably because I interrupted her interruption, and told me that she doesn't go into surgery with me so that's info I will need to let them know when I show up for surgery. So, now I'm irritated. Don't I have a fucking file where she can make a notation? Won't I have a file going into surgery letting them know what the fuck they're going to be doing to me?? I seriously do not understand people. She then shot off on some tangent about how they have 2 step down beds for post surgery patients, and blah, blah, blah. I don't even know what she was talking about. When she finally wound down I said "I have no idea what that information is supposed to mean to me.". She said "It just means that we will take care of you.". Whatever. I'm so not impressed already.
I then told her that I often have questions crop up and that I work much better with e-mail and it would be great if I had someplace to e-mail them to like I had at Dr. C's. She said no, we work much better with phone calls, there is no place for you to e-mail. Then she went on at length about how my situation is complicated and they wouldn't be able to convey the appropriate response via e-mail. Again, whatever. I wasn't asking her to e-mail me back. I would e-mail the questions to Dr. C's office, they would read them and think about them, then they would call me and answer them.
I asked her if she had any indication whatsoever when the surgery might be scheduled. She said she currently had no timeframe to reference at all. I let her know that as of last weekend I am no longer eating solid foods because of the choking hazard and that I'm even starting to have trouble with the liquids. I also mentioned that I'm unfortunately losing weight once again. She went off on some spiel about how I should be gaining weight before surgery (No, really?) and that the goal is to go into surgery as healthy as possible (You don't say!). And that I should be trying to suck down protein smoothies and the like (I would never have known this if it weren't for her!).
Lastly, I told her that Dr. C has been prescribing me Vicodin for my increasingly painful ear ache. I asked her if that was something that Dr. M would do for me. She said that we can discuss it at my 8/12 appointment. Um, okay. Dr. C told me that doctor's are not allowed to prescribe more that 5 days worth of narcotics. 8/12 is 11 days away. What am I supposed to do in the meantime?? Thankfully, Dr. C prescribed more than I'm actually taking. His 5 days of meds probably lasts me 8 days. And, as I mentioned before, baby doll handed over his leftover pain pills to me so I'm actually, probably okay until 8/12. But once again, shouldn't the head nurse be aware of a little detail like that?
Remind me again why I broke up with Dr. C?!?
She then called back around 5:30. JT was in my kitchen arranging a cheese platter for me and I had just been telling him what a tool this lady was. When I answered the phone and she announced herself, I told her I had just been talking about her. She said "Oh, are you telling everyone what a terrible person I am?". That comment threw me but I recovered fairly quickly and said "No, I was simply passing along the info that you gave me earlier.". So basically she knows she's an asshole and simply doesn't care? That's just great.
She said that there's a 'run' on surgery patients right now and due to the high demand, their particular team has submitted a request for more operating room time at Strong Hospital. She is hoping that if they are approved, they can get me in faster than whatever the current schedule would allow. She is also going to have their speech/swallowing therapist call me next week and set up an appointment to see if there is anything they can do about my current swallowing problems.
So, that's where things stand at the moment.
Fun stuff:
Poker last night was a blast! We managed to squeeze in 3 games and baby doll even managed to win some money for the first time! Meanwhile, my drinking buddy, Eric, canceled our happy hour tonight. I was pretty relieved because the guys didn't leave until 11:30 last night so I'm pretty pooped at the moment. My big plan for tonight is to simply go home, crawl into bed, and pull the covers over my head for the night.
Tomorrow Sammy is coming to see me. We're going to do lunch with Scott and Jamie so that the three people who I have put in charge of taking over my life, should I kick the bucket, will have met, and will know each other. Then Sam and I will ditch the men and go do something fun together like Park Ave Fest, or walking the pier, or baking cookies. My tee time with Sandi is set for 8:52 am on Sunday. I now have a movie date with Kit on Monday night. We're going to go see The Heat. It looks like the perfect girl buddy movie! I took Tuesday off from work. Baby doll has tickets to the PGA so I'm going to hang with him for the day and then he's going to make the trip to Oswego with me to visit T and Vic. Wednesday is still thrift store shopping with Elvisa. Thursday I now have a date to golf with Kunkel on her league. I just found out she plays at Shadow Lake which is where Sandi and I are going on Sunday so I'll even have some practice under my belt! And Friday I think will be the new happy hour night based on the responses I received today when I canceled tonight's festivities. Phew. Have I mentioned what a fantastic group of friends I have! I'm either so busy or so tired I don't even have time to think about the stupid 'bad' thing growing in my head. You guys totally rock!
Wednesday, I got home from work and Jo Ann had left a message on my answering machine at 5:05 pm saying "Hi, I didn't want you to think we forgot about you, I spoke to Dr. M and he has already started looking at the surgery schedule. You will probably need to come in before then so that we can get consent forms signed. I will let you know next steps tomorrow after my clinic with Dr. M". This message was weird. Why would I think they forgot about me when I didn't expect them to call until the following afternoon? Whatever. On the up side, at least communication with this group is overkill rather than underkill.
Jo Ann called yesterday around 4:00. I have decided that she's definitely not a people person. She's a smarmy, insincere, know it all. I'm not looking forward to dealing with her from here on out. I'm actually inventing ways to NOT deal with her from here on out which is probably not in my best interests. Kunkel and I were wishing we could trade Dr. C's support team with Dr. M's support team and then we'd have the perfect group! But hey, you can't please all the people, all the time. :-)
News from that phone call, Dr. V is on vacation next week. He's the reconstructive surgeon. I have a pre-op appointment with him for Monday, 8/12 at 8:00 am. I'm the first smiling face he gets to see upon returning from vacay. :-) Jo Ann assures me that the week delay in seeing him, in no way delays my surgery date. She said she will probably also be setting me up for a physical where they will take my blood and all the usual pre-op stuff. She then asked if I had any questions.
I started telling her about my awful experience waking up with the trach after the last surgery. She interrupted me and started talking about I don't even know what. I interrupted her and continued on with my request that it be noted that Ativan would be appreciated after the surgery. At which point she got pissy, probably because I interrupted her interruption, and told me that she doesn't go into surgery with me so that's info I will need to let them know when I show up for surgery. So, now I'm irritated. Don't I have a fucking file where she can make a notation? Won't I have a file going into surgery letting them know what the fuck they're going to be doing to me?? I seriously do not understand people. She then shot off on some tangent about how they have 2 step down beds for post surgery patients, and blah, blah, blah. I don't even know what she was talking about. When she finally wound down I said "I have no idea what that information is supposed to mean to me.". She said "It just means that we will take care of you.". Whatever. I'm so not impressed already.
I then told her that I often have questions crop up and that I work much better with e-mail and it would be great if I had someplace to e-mail them to like I had at Dr. C's. She said no, we work much better with phone calls, there is no place for you to e-mail. Then she went on at length about how my situation is complicated and they wouldn't be able to convey the appropriate response via e-mail. Again, whatever. I wasn't asking her to e-mail me back. I would e-mail the questions to Dr. C's office, they would read them and think about them, then they would call me and answer them.
I asked her if she had any indication whatsoever when the surgery might be scheduled. She said she currently had no timeframe to reference at all. I let her know that as of last weekend I am no longer eating solid foods because of the choking hazard and that I'm even starting to have trouble with the liquids. I also mentioned that I'm unfortunately losing weight once again. She went off on some spiel about how I should be gaining weight before surgery (No, really?) and that the goal is to go into surgery as healthy as possible (You don't say!). And that I should be trying to suck down protein smoothies and the like (I would never have known this if it weren't for her!).
Lastly, I told her that Dr. C has been prescribing me Vicodin for my increasingly painful ear ache. I asked her if that was something that Dr. M would do for me. She said that we can discuss it at my 8/12 appointment. Um, okay. Dr. C told me that doctor's are not allowed to prescribe more that 5 days worth of narcotics. 8/12 is 11 days away. What am I supposed to do in the meantime?? Thankfully, Dr. C prescribed more than I'm actually taking. His 5 days of meds probably lasts me 8 days. And, as I mentioned before, baby doll handed over his leftover pain pills to me so I'm actually, probably okay until 8/12. But once again, shouldn't the head nurse be aware of a little detail like that?
Remind me again why I broke up with Dr. C?!?
She then called back around 5:30. JT was in my kitchen arranging a cheese platter for me and I had just been telling him what a tool this lady was. When I answered the phone and she announced herself, I told her I had just been talking about her. She said "Oh, are you telling everyone what a terrible person I am?". That comment threw me but I recovered fairly quickly and said "No, I was simply passing along the info that you gave me earlier.". So basically she knows she's an asshole and simply doesn't care? That's just great.
She said that there's a 'run' on surgery patients right now and due to the high demand, their particular team has submitted a request for more operating room time at Strong Hospital. She is hoping that if they are approved, they can get me in faster than whatever the current schedule would allow. She is also going to have their speech/swallowing therapist call me next week and set up an appointment to see if there is anything they can do about my current swallowing problems.
So, that's where things stand at the moment.
Fun stuff:
Poker last night was a blast! We managed to squeeze in 3 games and baby doll even managed to win some money for the first time! Meanwhile, my drinking buddy, Eric, canceled our happy hour tonight. I was pretty relieved because the guys didn't leave until 11:30 last night so I'm pretty pooped at the moment. My big plan for tonight is to simply go home, crawl into bed, and pull the covers over my head for the night.
Tomorrow Sammy is coming to see me. We're going to do lunch with Scott and Jamie so that the three people who I have put in charge of taking over my life, should I kick the bucket, will have met, and will know each other. Then Sam and I will ditch the men and go do something fun together like Park Ave Fest, or walking the pier, or baking cookies. My tee time with Sandi is set for 8:52 am on Sunday. I now have a movie date with Kit on Monday night. We're going to go see The Heat. It looks like the perfect girl buddy movie! I took Tuesday off from work. Baby doll has tickets to the PGA so I'm going to hang with him for the day and then he's going to make the trip to Oswego with me to visit T and Vic. Wednesday is still thrift store shopping with Elvisa. Thursday I now have a date to golf with Kunkel on her league. I just found out she plays at Shadow Lake which is where Sandi and I are going on Sunday so I'll even have some practice under my belt! And Friday I think will be the new happy hour night based on the responses I received today when I canceled tonight's festivities. Phew. Have I mentioned what a fantastic group of friends I have! I'm either so busy or so tired I don't even have time to think about the stupid 'bad' thing growing in my head. You guys totally rock!
Tuesday, July 30, 2013
July 30
My work phone rang at 3:45 today with Dr. C's name on the ID. It was Becky. She said she was calling to see if I still wanted to keep my appointment tomorrow morning. I told her I definitely wanted to keep it, that I wanted to discuss surgery with Dr. C. She said that I wouldn't actually get to see Dr. C, I would be with Dr. B but Dr. B is well aware of my case so all should be well. I said okay. We hung up.
I then sat there and stewed for half an hour.
I called Becky back and told her that I was really expecting to talk to Dr. C tomorrow, and I wasn't sure that talking to Dr. B was going to cut it for me. She said no problem, let me fix that for you, and started looking for an opening with Dr. C. I interrupted her and told her that this was kind of awkward but the reason I wanted to see Dr. C is because I'd like Dr. M to do my surgery but I feel like I should talk to Dr. C about it before I move forward and that I've been feeling bad for a handful of days now because I basically feel like I'm "breaking up" with Dr. C. She immediately shushed me. She said that it's my body and my life and that I should do whatever makes me most comfortable. She said that everyone in Dr. C's office only wishes the absolute best for me. She then said that she would cancel my appointment for tomorrow but that she would have Dr. C call me tonight.
Dr. C called about an hour ago. I told him the meeting with Dr. M went great and that I walked out of there wanting to schedule the surgery immediately. He told me that he holds Dr. M in the highest regard and that he knows I'll be in the best of hands and he told me that I shouldn't feel like I'm "breaking up" (yeah, I can't believe Becky told him I said that!!) with him. He asked what Dr. M said he was going to do. I told him that Dr. M pretty much told me all the same stuff that he, Dr. C, had told me. He then asked me how I was doing otherwise. The answer is fine, of course. I asked him how I go about making this change. Do I just call Dr. M and ask him to put me in the books? Dr. C confirmed that that was all I needed to do. He also said that he talks to Dr. M just about every week so he will be keeping an eye on me anyway. He then wished me luck and we hung up.
So, that's that. Tomorrow I call Ann and ask her to get the ball rolling with getting the surgery scheduled with Dr. M ASAP.
Other sundry health stuff.......
I tried eating a miniscule piece of french fry drenched in gravy on Saturday and spent 5 minutes choking on it in the bathroom. With that, I have officially given up trying to eat food. I'm back on full liquids only. I'm even crushing my Vicodin and putting it in juice rather than splitting the pills in half and trying to take them because even they were getting stuck more than 50% of the time.
And I've been staying away from the scale because I just really don't want to know. I was shopping for a pair of jeans last weekend and grabbed a size 4 off the shelf and had to exchange it for a size 2 after a trip to the fitting room. That's not good. 'Nuff said.
My ear ache has been getting worse. Sometimes within an hour of taking the Vicodin it's back to aching again. I also have no idea what to do when I run out of pain meds now that I will no longer be seeing Dr. C. I feel weird hitting Dr. M up for some narcotics after only one 'date'. Maybe Dr. K will help me out if I get desperate enough. Meanwhile, baby doll only used a few of his pain pills from his surgery so he's going to hand over the rest of them to me. I should be set for a while. Maybe even set all the way up until surgery if it happens quick enough.
And mentally, I've had a rough two days. Not sure what the problem is. I think all of this waiting around stuff is grating on my nerves. Let's just do the damn surgery already! So, I've been a bit glum. Upon arriving at work this morning, JT came over to say 'hi' and I simply started crying. He gave me a huge hug and let me get his shirt soggy. I hate spontaneous meltdowns. <sigh> And yes, I really do try to schedule them. I was feeling the need for a good cry last Thursday and told my sweetie that I was going to hang tough until we got home but I was then planning on laying down and having myself a nice big sob-fest. Unfortunately, I was simply so relieved to finally be home, with baby doll tucked in safe and sound, surrounded by my cozy little life, that the need to cry simply evaporated.
Fun stuff:
Because yes, fun stuff DOES still happen even with a cancerous tumor growing in your head!
Scott and I headed back to Waterloo Outlet Mall last Friday. The number one thing on our shopping list was to find him a new pair of sneakers which did not end up happening the week before. Plus, we only made it to half the stores on that first trip. He found a really cool pair on this second trip. I was still unsuccessful in finding a pair of white sandals that I like but I DID find some adorable clothes. This time around I'm the one who made out like a bandit while my sweetheart's credit card did all the heavy lifting. Payback isn't always a bitch. Sometimes it rocks! LOL!
At some point in time this past week we went and saw The Conjuring. It was pretty creepy. We both enjoyed it.
On Saturday we drove out to Charlotte Beach, grabbed some lunch, and walked the pier. It was perfect weather. Not too warm, partially cloudy with a nice breeze. It was a good day to be outside. We ended the afternoon with some frozen custard from Abbott's. Ahhhh........such a good life.
I'm now running around trying to make one last 'date' with as many friends as I can before my surgery. Thursday night I'm having the boys over for a poker game, Friday night is a work happy hour, Sunday is golfing with Sandi, Tuesday I'm heading to Oswego to hang out with T for a couple of hours, and Wednesday I took a half day from work so that Elvisa and I can go on a mad, crazy thrift store shopping spree. I still need to make a plan with Sammy and I'm sure I'm forgetting a few peeps that might want to hear my lovely, muffled speech one last time before I stop being able to talk for an extended period but I'm sure they'll holler if they want some calendar time with me.
And now I'm off to mess around on my iPad for a while, eagerly awaiting the arrival of the light of my life around 9:00. I keep trying to convince myself that the anticipation is enjoyable but I'm just kidding myself. I hate when he works the late shift. 1 hour, 59 minutes and counting..........
I then sat there and stewed for half an hour.
I called Becky back and told her that I was really expecting to talk to Dr. C tomorrow, and I wasn't sure that talking to Dr. B was going to cut it for me. She said no problem, let me fix that for you, and started looking for an opening with Dr. C. I interrupted her and told her that this was kind of awkward but the reason I wanted to see Dr. C is because I'd like Dr. M to do my surgery but I feel like I should talk to Dr. C about it before I move forward and that I've been feeling bad for a handful of days now because I basically feel like I'm "breaking up" with Dr. C. She immediately shushed me. She said that it's my body and my life and that I should do whatever makes me most comfortable. She said that everyone in Dr. C's office only wishes the absolute best for me. She then said that she would cancel my appointment for tomorrow but that she would have Dr. C call me tonight.
Dr. C called about an hour ago. I told him the meeting with Dr. M went great and that I walked out of there wanting to schedule the surgery immediately. He told me that he holds Dr. M in the highest regard and that he knows I'll be in the best of hands and he told me that I shouldn't feel like I'm "breaking up" (yeah, I can't believe Becky told him I said that!!) with him. He asked what Dr. M said he was going to do. I told him that Dr. M pretty much told me all the same stuff that he, Dr. C, had told me. He then asked me how I was doing otherwise. The answer is fine, of course. I asked him how I go about making this change. Do I just call Dr. M and ask him to put me in the books? Dr. C confirmed that that was all I needed to do. He also said that he talks to Dr. M just about every week so he will be keeping an eye on me anyway. He then wished me luck and we hung up.
So, that's that. Tomorrow I call Ann and ask her to get the ball rolling with getting the surgery scheduled with Dr. M ASAP.
Other sundry health stuff.......
I tried eating a miniscule piece of french fry drenched in gravy on Saturday and spent 5 minutes choking on it in the bathroom. With that, I have officially given up trying to eat food. I'm back on full liquids only. I'm even crushing my Vicodin and putting it in juice rather than splitting the pills in half and trying to take them because even they were getting stuck more than 50% of the time.
And I've been staying away from the scale because I just really don't want to know. I was shopping for a pair of jeans last weekend and grabbed a size 4 off the shelf and had to exchange it for a size 2 after a trip to the fitting room. That's not good. 'Nuff said.
My ear ache has been getting worse. Sometimes within an hour of taking the Vicodin it's back to aching again. I also have no idea what to do when I run out of pain meds now that I will no longer be seeing Dr. C. I feel weird hitting Dr. M up for some narcotics after only one 'date'. Maybe Dr. K will help me out if I get desperate enough. Meanwhile, baby doll only used a few of his pain pills from his surgery so he's going to hand over the rest of them to me. I should be set for a while. Maybe even set all the way up until surgery if it happens quick enough.
And mentally, I've had a rough two days. Not sure what the problem is. I think all of this waiting around stuff is grating on my nerves. Let's just do the damn surgery already! So, I've been a bit glum. Upon arriving at work this morning, JT came over to say 'hi' and I simply started crying. He gave me a huge hug and let me get his shirt soggy. I hate spontaneous meltdowns. <sigh> And yes, I really do try to schedule them. I was feeling the need for a good cry last Thursday and told my sweetie that I was going to hang tough until we got home but I was then planning on laying down and having myself a nice big sob-fest. Unfortunately, I was simply so relieved to finally be home, with baby doll tucked in safe and sound, surrounded by my cozy little life, that the need to cry simply evaporated.
Fun stuff:
Because yes, fun stuff DOES still happen even with a cancerous tumor growing in your head!
Scott and I headed back to Waterloo Outlet Mall last Friday. The number one thing on our shopping list was to find him a new pair of sneakers which did not end up happening the week before. Plus, we only made it to half the stores on that first trip. He found a really cool pair on this second trip. I was still unsuccessful in finding a pair of white sandals that I like but I DID find some adorable clothes. This time around I'm the one who made out like a bandit while my sweetheart's credit card did all the heavy lifting. Payback isn't always a bitch. Sometimes it rocks! LOL!
At some point in time this past week we went and saw The Conjuring. It was pretty creepy. We both enjoyed it.
On Saturday we drove out to Charlotte Beach, grabbed some lunch, and walked the pier. It was perfect weather. Not too warm, partially cloudy with a nice breeze. It was a good day to be outside. We ended the afternoon with some frozen custard from Abbott's. Ahhhh........such a good life.
I'm now running around trying to make one last 'date' with as many friends as I can before my surgery. Thursday night I'm having the boys over for a poker game, Friday night is a work happy hour, Sunday is golfing with Sandi, Tuesday I'm heading to Oswego to hang out with T for a couple of hours, and Wednesday I took a half day from work so that Elvisa and I can go on a mad, crazy thrift store shopping spree. I still need to make a plan with Sammy and I'm sure I'm forgetting a few peeps that might want to hear my lovely, muffled speech one last time before I stop being able to talk for an extended period but I'm sure they'll holler if they want some calendar time with me.
And now I'm off to mess around on my iPad for a while, eagerly awaiting the arrival of the light of my life around 9:00. I keep trying to convince myself that the anticipation is enjoyable but I'm just kidding myself. I hate when he works the late shift. 1 hour, 59 minutes and counting..........
Friday, July 26, 2013
July 26
Yesterday was pretty damned stressful. I was up at 5:30 in the morning, nauseous as hell, got my girly thing, had diarrhea, and thought I was going to keel over from sheer anxiety. Luckily baby doll came over around 9:00, and climbed into bed to hold me and everything simmered down for a while.
I drove him to his surgery at 11:30. They called him back at noon but he still wasn't prepped by the time I had to leave for my own appointment so his sweetheart of a sister, Karen, took over from there. I left the surgery center at 12:10. My appointment was supposedly only 4 minutes down the road. Yeah, right. I didn't realize the damn center was right INSIDE the hospital. I was looking for a separate building. I was also looking for a sign. They had signs posted for every other thing like the School of Dentistry, and Sublot B for Campus XZ and other stupid crap, but there was not a sign for the Wilmot Cancer Center. Justin, my date for my appointment, finally called me and told me that he parked in the hospital parking garage and was in the process of looking for the cancer center. I decided to take his lead. I parked my car at exactly 12:45. I then called the cancer center to let them know I was running late and to ask where they were which is when I discovered they were in the hospital itself, and JT discovered it around that time too. When all was said and done (meeting up with JT, registering ~ 3 different times, and finally being escorted into a waiting room) I was a good 20 minutes late for my appointment. Grrrrrrr. I hate being late.
So, Vernetta weighed me in, took my blood pressure and all the usual fun stuff. Then I was put in a room where Ann, the nurse coordinator, came back and had a little conversation with me. She wanted to know what I did for a living, if I've been getting any speech therapy, who I lived with.....when I told her I live with two dogs and two cats that set her off on a convo about her 20 lb. Maine Coon cat. I think the whole light-hearted back and forth stuff was just to put me at ease. She then asked me what I expected from this appointment. I told her that I was hoping Dr. M was a slightly better communicator than Dr. C because I had questions and I never seem to get a chance to pose them or discuss them with Dr. C. She said that not only is Dr. M a good communicator, he's also very kind. I thought that was an odd comment until later in the convo when I mentioned that Dr. C feels that he and Dr. M are the two best head and neck guys in Rochester, she got a little wound up and said there were actually 4 amazing head and neck guys and three of them work there at Strong Hospital. I also found out that she used to work for Dr. C many years ago and I got the feeling that she doesn't muchly like him. Fun stuff!
Then Dr. Ryan came in. I missed what his last name was but he said he's a resident, which according to the doctor I keep in my back pocket (<3 Karen!) that's a step below an attending.......I think. So, I got to talk to him for a bit. Went through my medical history. He looked in my ears, up my nose, in my mouth, and stuck his fingers down my throat. REALLY unpleasant. I was gagging, pushing at him, and squirming away from him. I told him they knocked me out to be able to do that to me last week, for crying out loud! I was able to ask him a few of my questions. I asked him in what manner the cancer would likely kill me if I let it go. He said all of the ways I have imagined could actually happen. Glad to know my rampant imagination is on target. Ha!
Finally, Dr. M came in. Now HE is pretty damn hot. I might need to snag Kunkel for another appointment if I get to see him again because I think she'll practically drool over him if she thinks Dr. C is so fine. Or she might decide to flash boob again. Maybe I should leave her home.....
Anyway, the first words out of Dr. M's mouth were "Well, this SUCKS.". I like him already. He numbed me up, and he also stuck his fingers down my throat. Didn't bother me a bit. I gave Dr. Ryan a 'look'. Then Dr. M and I started a convo. I didn't take notes so I'm just going to summarize what I remember. JT took notes and he still has access to my blog so he said that he would chime in if he thought I missed anything important. Dr. M's basic attitude was "Let's go after this thing....hard.".
- My jaw would definitely need to be split. No robotic arm surgery option for me. I asked why they had to go in through my mouth. Why can't they go in through my neck? (5-6 of you have asked me this now so I was finally able to submit the question and get the answer.) He said it's for visibility. They will be able to see the tumor, all of the tumor if they go in through my mouth. Visibility would be very poor if they went in through my neck and they might miss some.
- My jaw will work just fine after surgery. The muscle that works my jaw will not be affected.
- Supposedly, the scar from splitting my lip down the center heals up really well and often you can't even tell there's a scar there. I'll believe that when I see it. I saw the pictures at Dr. Vega's (the plastic surgeon) and it wasn't pretty, but whatever, I'm not currently worried about pretty. I'm worried about functionality and life span. Dr. M said he would marry up the scar that runs down from my lip, with the neck incision that was made previously to minimize more scarring.
- Radiated flesh heals much, much slower than healthy flesh. Dr. M said that I will have saliva leaking out of my lip, jaw, neck incision for a while after the surgery but that it will be a temporary occurrence.
- My voicebox. Currently, the cancer has not reached my voicebox but it is creeping in that direction. He said that once they get in there, the whole game could change if the tumor has spread further than what the scans have been showing. He said they really don't know what they're dealing with until they open me up and see if for themselves. He said that they will likely need to remove 2/3 of the base of my tongue in order to remove not only the tumor but a big enough margin of good flesh too. He said that if for some reason they need to remove even more than 2/3 of the base of my tongue, they would then remove my voicebox as well even if the cancer hasn't reached it. He said that's because once you remove that much of the tongue, the voicebox will cause me to constantly be aspirating my own saliva which will lead to constant pneumonia and other lung infections. Along with 2/3's of the base of my tongue, he said they will be removing part of the wall of my throat as well.
- A feeding tube (or PEG is the official name) would definitely be needed permanently.
- He doesn't feel the trach would be permanent. I believe he said total recovery time from the surgery would likely be 4-6 months. He said it could take up to 12 months. I can't remember if by recovery time he was talking about the trach coming out as well. So, the trach would only be in for 6 months, 12 months tops? Maybe JT remembers....
- He feels that after surgery I should then go back for both radiation and chemo. He said this cancer is obviously VERY aggressive so we need to be aggressive right back at it.
- He wants me to start speech and swallowing therapy before I even go in for the surgery. He thinks it would be super helpful.
- He also asked me if I was already working with an oncologist. I said not yet but my boss guy just hooked me up with contact information for his sister in law who is a PA at Interlakes Oncology so I will be e-mailing her this weekend to start a conversation.
- When Dr. M was physically checking me out, he commented that my left vocal cord isn't working. Say what?? He said it's a little odd since all my cancer stuff is on the right side of my head but he said that he has sometimes seen where radiation treatments can cause this to happen. I didn't think to ask him if it was permanent or not. I would assume yes since radiation ended back in September but I still only have half my taste buds at this point so maybe not.
- Dr. M agreed with Dr. C's assessment that there's no guarantee that the surgery will be a cure. But unlike Dr. C, Dr. M's attitude was, why not fight? He very firmly believes that at age 43, I should be giving this whole thing my best shot. He said it's great that it's confined to just the one area and hasn't spread anywhere else and he feels it's perfectly operable.
- I then also talked to him about just getting chemo, rather than reaching for a cure, just out of curiosity. He said that if the tumor actually reacts to the chemo, it would probably buy me up to a year before it killed me. If the tumor did not react to the chemo then it would be less than 6 months before I kicked it based on how aggressive this tumor is.
- I then asked him when I should be making the decision to have surgery. He said "not today, but sometime in the next couple of weeks. Don't let the decision drag out for weeks on end."
So, that's about all my poor addled brain can recall. Dr. M sure does give a good pep talk. I walked out of there ready to check in to the hospital right then and there to just do this thing! Meanwhile, I have a follow up appointment with Dr. C next Wednesday. I'm already feeling a little anxious about it because I kind of want Dr. M to do the surgery now, not Dr. C. Not because I don't think Dr. C is qualified, I know for a fact that he does excellent work, but you wonder how much a surgeon's attitude affects what goes on when a patient is under the knife. Since Dr. C has been kind of a bummer about this whole thing, will he not be as careful because he already laid out the worst case scenario for me and knows that he won't be failing any expectations that he's given me?
I had actually been leaning back towards the surgery option even before my appointment with Dr. M. I was discussing it with baby doll the other night. Dr. C keeps talking about my quality of life being so horrible after the surgery but I started thinking that that's awfully subjective, isn't it? How does he know what I would consider a poor quality of life? I don't give a hoot about eating through a feeding tube for the rest of my life. I've been struggling to eat for the past year anyway and most of what I manage to eat tastes like dirt. Eating has become a chore rather than a pleasure so I can't say I'm going to miss it too awfully much. I would be super bummed to lose my voice but heck, JT keeps saying it would be a huge improvement. ;-P I would be happy if after the surgery I can still play games on my Wii, I can still cuddle up in bed with a cat laying on my chest and purring, I can still lay in my hammock in the backyard and feel the sun on my face. So, I really need to have one last convo with Dr. C and then I believe I will be setting the surgery option in motion sooner rather than later. Stay tuned!
Oh, and to finish up my day, I raced back over to the surgery center after my appointment with Dr. M to see the love of my life. He was still a little groggy coming out from under anesthesia but I missed the really good stuff. I'll have to ask his sister if he did any more Austin Powers impersonations when he first woke up. He was pretty hilarious last time! I think they finally released him around 3:30, we got all of our drug scripts filled, and finally made it home around 5:30. I got him situated in bed with his arm elevated , exhausted but happy that everything was finally finished. A quiet night was spent watching movies (OMG Movie 43 was terrible!! Although babe thought it was hilarious. Whatever. There's no accounting for taste.), snuggling, and appreciating the fact that we're together, and for today all is right with the world.:-)
I drove him to his surgery at 11:30. They called him back at noon but he still wasn't prepped by the time I had to leave for my own appointment so his sweetheart of a sister, Karen, took over from there. I left the surgery center at 12:10. My appointment was supposedly only 4 minutes down the road. Yeah, right. I didn't realize the damn center was right INSIDE the hospital. I was looking for a separate building. I was also looking for a sign. They had signs posted for every other thing like the School of Dentistry, and Sublot B for Campus XZ and other stupid crap, but there was not a sign for the Wilmot Cancer Center. Justin, my date for my appointment, finally called me and told me that he parked in the hospital parking garage and was in the process of looking for the cancer center. I decided to take his lead. I parked my car at exactly 12:45. I then called the cancer center to let them know I was running late and to ask where they were which is when I discovered they were in the hospital itself, and JT discovered it around that time too. When all was said and done (meeting up with JT, registering ~ 3 different times, and finally being escorted into a waiting room) I was a good 20 minutes late for my appointment. Grrrrrrr. I hate being late.
So, Vernetta weighed me in, took my blood pressure and all the usual fun stuff. Then I was put in a room where Ann, the nurse coordinator, came back and had a little conversation with me. She wanted to know what I did for a living, if I've been getting any speech therapy, who I lived with.....when I told her I live with two dogs and two cats that set her off on a convo about her 20 lb. Maine Coon cat. I think the whole light-hearted back and forth stuff was just to put me at ease. She then asked me what I expected from this appointment. I told her that I was hoping Dr. M was a slightly better communicator than Dr. C because I had questions and I never seem to get a chance to pose them or discuss them with Dr. C. She said that not only is Dr. M a good communicator, he's also very kind. I thought that was an odd comment until later in the convo when I mentioned that Dr. C feels that he and Dr. M are the two best head and neck guys in Rochester, she got a little wound up and said there were actually 4 amazing head and neck guys and three of them work there at Strong Hospital. I also found out that she used to work for Dr. C many years ago and I got the feeling that she doesn't muchly like him. Fun stuff!
Then Dr. Ryan came in. I missed what his last name was but he said he's a resident, which according to the doctor I keep in my back pocket (<3 Karen!) that's a step below an attending.......I think. So, I got to talk to him for a bit. Went through my medical history. He looked in my ears, up my nose, in my mouth, and stuck his fingers down my throat. REALLY unpleasant. I was gagging, pushing at him, and squirming away from him. I told him they knocked me out to be able to do that to me last week, for crying out loud! I was able to ask him a few of my questions. I asked him in what manner the cancer would likely kill me if I let it go. He said all of the ways I have imagined could actually happen. Glad to know my rampant imagination is on target. Ha!
Finally, Dr. M came in. Now HE is pretty damn hot. I might need to snag Kunkel for another appointment if I get to see him again because I think she'll practically drool over him if she thinks Dr. C is so fine. Or she might decide to flash boob again. Maybe I should leave her home.....
Anyway, the first words out of Dr. M's mouth were "Well, this SUCKS.". I like him already. He numbed me up, and he also stuck his fingers down my throat. Didn't bother me a bit. I gave Dr. Ryan a 'look'. Then Dr. M and I started a convo. I didn't take notes so I'm just going to summarize what I remember. JT took notes and he still has access to my blog so he said that he would chime in if he thought I missed anything important. Dr. M's basic attitude was "Let's go after this thing....hard.".
- My jaw would definitely need to be split. No robotic arm surgery option for me. I asked why they had to go in through my mouth. Why can't they go in through my neck? (5-6 of you have asked me this now so I was finally able to submit the question and get the answer.) He said it's for visibility. They will be able to see the tumor, all of the tumor if they go in through my mouth. Visibility would be very poor if they went in through my neck and they might miss some.
- My jaw will work just fine after surgery. The muscle that works my jaw will not be affected.
- Supposedly, the scar from splitting my lip down the center heals up really well and often you can't even tell there's a scar there. I'll believe that when I see it. I saw the pictures at Dr. Vega's (the plastic surgeon) and it wasn't pretty, but whatever, I'm not currently worried about pretty. I'm worried about functionality and life span. Dr. M said he would marry up the scar that runs down from my lip, with the neck incision that was made previously to minimize more scarring.
- Radiated flesh heals much, much slower than healthy flesh. Dr. M said that I will have saliva leaking out of my lip, jaw, neck incision for a while after the surgery but that it will be a temporary occurrence.
- My voicebox. Currently, the cancer has not reached my voicebox but it is creeping in that direction. He said that once they get in there, the whole game could change if the tumor has spread further than what the scans have been showing. He said they really don't know what they're dealing with until they open me up and see if for themselves. He said that they will likely need to remove 2/3 of the base of my tongue in order to remove not only the tumor but a big enough margin of good flesh too. He said that if for some reason they need to remove even more than 2/3 of the base of my tongue, they would then remove my voicebox as well even if the cancer hasn't reached it. He said that's because once you remove that much of the tongue, the voicebox will cause me to constantly be aspirating my own saliva which will lead to constant pneumonia and other lung infections. Along with 2/3's of the base of my tongue, he said they will be removing part of the wall of my throat as well.
- A feeding tube (or PEG is the official name) would definitely be needed permanently.
- He doesn't feel the trach would be permanent. I believe he said total recovery time from the surgery would likely be 4-6 months. He said it could take up to 12 months. I can't remember if by recovery time he was talking about the trach coming out as well. So, the trach would only be in for 6 months, 12 months tops? Maybe JT remembers....
- He feels that after surgery I should then go back for both radiation and chemo. He said this cancer is obviously VERY aggressive so we need to be aggressive right back at it.
- He wants me to start speech and swallowing therapy before I even go in for the surgery. He thinks it would be super helpful.
- He also asked me if I was already working with an oncologist. I said not yet but my boss guy just hooked me up with contact information for his sister in law who is a PA at Interlakes Oncology so I will be e-mailing her this weekend to start a conversation.
- When Dr. M was physically checking me out, he commented that my left vocal cord isn't working. Say what?? He said it's a little odd since all my cancer stuff is on the right side of my head but he said that he has sometimes seen where radiation treatments can cause this to happen. I didn't think to ask him if it was permanent or not. I would assume yes since radiation ended back in September but I still only have half my taste buds at this point so maybe not.
- Dr. M agreed with Dr. C's assessment that there's no guarantee that the surgery will be a cure. But unlike Dr. C, Dr. M's attitude was, why not fight? He very firmly believes that at age 43, I should be giving this whole thing my best shot. He said it's great that it's confined to just the one area and hasn't spread anywhere else and he feels it's perfectly operable.
- I then also talked to him about just getting chemo, rather than reaching for a cure, just out of curiosity. He said that if the tumor actually reacts to the chemo, it would probably buy me up to a year before it killed me. If the tumor did not react to the chemo then it would be less than 6 months before I kicked it based on how aggressive this tumor is.
- I then asked him when I should be making the decision to have surgery. He said "not today, but sometime in the next couple of weeks. Don't let the decision drag out for weeks on end."
So, that's about all my poor addled brain can recall. Dr. M sure does give a good pep talk. I walked out of there ready to check in to the hospital right then and there to just do this thing! Meanwhile, I have a follow up appointment with Dr. C next Wednesday. I'm already feeling a little anxious about it because I kind of want Dr. M to do the surgery now, not Dr. C. Not because I don't think Dr. C is qualified, I know for a fact that he does excellent work, but you wonder how much a surgeon's attitude affects what goes on when a patient is under the knife. Since Dr. C has been kind of a bummer about this whole thing, will he not be as careful because he already laid out the worst case scenario for me and knows that he won't be failing any expectations that he's given me?
I had actually been leaning back towards the surgery option even before my appointment with Dr. M. I was discussing it with baby doll the other night. Dr. C keeps talking about my quality of life being so horrible after the surgery but I started thinking that that's awfully subjective, isn't it? How does he know what I would consider a poor quality of life? I don't give a hoot about eating through a feeding tube for the rest of my life. I've been struggling to eat for the past year anyway and most of what I manage to eat tastes like dirt. Eating has become a chore rather than a pleasure so I can't say I'm going to miss it too awfully much. I would be super bummed to lose my voice but heck, JT keeps saying it would be a huge improvement. ;-P I would be happy if after the surgery I can still play games on my Wii, I can still cuddle up in bed with a cat laying on my chest and purring, I can still lay in my hammock in the backyard and feel the sun on my face. So, I really need to have one last convo with Dr. C and then I believe I will be setting the surgery option in motion sooner rather than later. Stay tuned!
Oh, and to finish up my day, I raced back over to the surgery center after my appointment with Dr. M to see the love of my life. He was still a little groggy coming out from under anesthesia but I missed the really good stuff. I'll have to ask his sister if he did any more Austin Powers impersonations when he first woke up. He was pretty hilarious last time! I think they finally released him around 3:30, we got all of our drug scripts filled, and finally made it home around 5:30. I got him situated in bed with his arm elevated , exhausted but happy that everything was finally finished. A quiet night was spent watching movies (OMG Movie 43 was terrible!! Although babe thought it was hilarious. Whatever. There's no accounting for taste.), snuggling, and appreciating the fact that we're together, and for today all is right with the world.:-)
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