Dr. C called last night. He wanted to let me know that the biopsy results came back and as expected, they're positive. He also talked to Dr. A and also as expected, she doesn't think radiation is an option as far as a permanent solution goes. He then started talking to me some more about the surgery. He feels that the feeding tube in my stomach would be permanent but now he's saying that maybe the trach would not be. Maybe I would just need it for a year or two and then the swelling would go down enough for me to talk and breath again through my nose and mouth. This confused me for a number of different reasons. First of all, he had mentioned that the tumor was right next to my voicebox and that it was a concern. Second, he said that movement of my jaw would be affected with the surgery since the tumor is way down deep, embedded and entwined in the muscle. On top of all this, the last time I spoke to him, he didn't sound very optimistic about the surgery getting rid of all the cancer, in general. His opinion seemed to be that the cancer is going to kill me one way or another. It's just a matter of when, and what my quality of life will be when it happens. I finally stopped the conscious stream of thought thing that he had going and I told him that after our last conversation that I had been leaning towards the chemo, shorter, better life option. He said that if I was 20-30 years older that he would fully support that decision but he said it's very distressing for that to be the outcome for a 43 year old woman. Um, okay. (But he really needs to embrace the whole 'it is what it is' mantra.) He then asked me if I was having any difficulty breathing. Um, no? (And now I'm freaking out, am I going to start having difficulty breathing as this thing grows??) And of course, his final query was about my pain management. Did I need any more Vicodin yet? Nope, still trying to get through the truckload I was given last week. I hung up baffled as usual. I think I'm going to type up a bunch of questions and thoughts for him again and e-mail them to him. It seems that if I give him some specific points/questions to focus on, he is able to do a little better in the communication department.
Meanwhile, I'm still scheduled with Dr. Miller on Thursday. I need to tap someone here at work to be my second set of ears at that appointment. I need to choose carefully too now that things are getting so unhappy. Poor Kunkel was stressing about me all weekend after being my person at the biospy. I feel bad that I ruined one of her few non-busy weekends! :-(
In other news, my legs are almost back to normal. Still a little sore but it's easily ignorable. And rather than dissolving, the stitch in my tongue actually fell out the other night.
No new fun stuff to report. I've been spending as much time with my hot, hot man as I can. Last night was supposed to be a night with his daughter but he came over to eat dinner with me and play some cards before going to be with her. While we were playing cards, his wife sent him a text. Her shift at work was canceled so I got to keep him for the entire night. Woo hoo! Bonus night!
Tuesday, July 23, 2013
Sunday, July 21, 2013
July 21
I don't have much to report but thought I should check in and touch base.....and do some rambling, of course. :-)
I've been creaking around like a granny since Wednesday afternoon. Stairs are especially excruciating. I finally called Dr. B on Friday to find out what they did to me when I was under anesthesia because I was starting to freak out about how bad I felt. Turns out they had to give me a few extra doses of paralytic in order to get my jaw to relax enough for them to get in and get the biopsy. I guess this often leaves patients feeling like they were run over by a Mack truck. Once again, they couldn't have told me this before releasing me?? I was having a heart attack thinking I had accidentally overdosed on acetaminophen and the poisoning of my liver had begun, or the fact that a side effect of Vicodin is that it 'backs' you up and I thought my body was going toxic from that, or that my last tetanus shot was no good and they had given me lockjaw when they punctured my tongue to get the biopsy, or.......imagination can be both a wonderful and horrible thing.
Anyway, difficulty walking slowed me down for the weekend but I was super relieved to know what was causing it. I ended up canceling on the Comedy Club with Kim and Jamie. They came over to see me instead so that I wouldn't have to leave the house. We played some games, barbequed some chicken, and had a really good visit. Kim brought me some 'cheer up' gifts. I now have a beautiful, leather bound journal that I'm almost scared to write in. I'm going to have to figure out a really good use for it before a pen gets anywhere near it. She also brought me a gift card for Barnes & Noble. I want to buzz out there some time this week and check out their puzzle/game section. The game that the three of us played Friday night was called Name Five. I found it in my game chest, still in it's wrapper! I'm so glad I finally had some peeps to play it with and it has now been officially broken in. And Kim has now given me the means to find an all new game to torture people with. Bwah...ha...ha.
Saturday, baby doll and I had plans to hit Waterloo Outlet Mall and have a retail therapy session. I wasn't sure my legs were up for much but decided to give it a try. A bonus was that I could dope up on Vicodin to cover the muscle pain/spasms, and sleep all the way there and back again while he drove. It was slow going but we managed to hit a few stores. I wasn't really in the mood to buy much for myself. Paying retail when I know I can go to a billion different thrift stores and get good, cheap clothes makes it a bit of a turn-off for me to clothes shop at real stores, even if they are outlet stores. On the other hand, I have no problem buying retail for my incredibly hot man. J. Crew, Ralph Lauren, Tommy Hilfiger, Calvin Klein, Eddie Bauer.......we hit 'em all! It was fun making him play dress up for me and it was cool being able to have him try on some new and different colors that aren't in his usual wardrobe. And let me tell you, he made out like a bandit! I bought him five pairs of shorts, four really nice t-shirts, and four dressy shirts. He's totally styling! And what made it even better is that nobody had ever done that for him before. Taken him on a whirlwind (okay, we were turtle slow due to my legs but you know what I mean) shopping spree and buying an entire wardrobe for him and helping him update his style. He was tickled pink which made me feel on top of the world. :-) Have I mentioned how much I love this guy?
Meanwhile he was feeling left out so I let him buy me a really cute pair of Sketchers and I was in dire need of some new 8 x 8 pans for my baking frenzies. When in doubt, new kitchen stuff always makes me happy.
Today I was supposed to be driving to Oswego to visit my friend T. I already knew yesterday morning when I got up that my legs were likely not going to be up for an hour and a half drive each way to see her plus I'd have to cut way back on the pain killers if I was on the road. So, I had to bow out on her. Temporarily, of course, it will be rescheduled. So, my actual plan for today is to lay in bed for most of the day, dosing up on pain meds and hoping my legs feel well enough for a full day of work tomorrow.
The stitch is still in my tongue, and hurting, it's supposed to dissolve eventually but I have no idea how long that takes. My lip is still blown up, from what I can only assume were the clamps they used. The sores have scabbed over though and are starting to peel so at least I know that boo-boo is healing. Swallowing is still painful/difficult. Food is definitely getting stuck even more often than it was before. I've moved back to eating mostly liquids for the past four days. Alas, this means the 3 pounds I had gained have disappeared again. My scale said 115.0 this morning. T actually has some protein packets she's going to send me to see if they'll help bulk me up. I also have two half gallons of ice cream in my fridge. Right after I post this I will be making myself a milkshake.
My second opinion appointment is on Thursday at 12:45. I was seriously pissed when I got the call on Friday. I already have this Thursday off from work because honey bunny is having his final surgery on his hand and I'm supposed to be his 'person'. Un-fucking-believable that I have to miss it. You would think with all the other crap that fate has been throwing at me, it could have given me this one little scheduling thing. But no, I can't be there for my sweetie. His sister is going to take him instead. <sigh> At least he'll be dropped off at my place afterwards so that I can baby him to my heart's content. I will have to make due with that.
Meanwhile, other than the activities listed above, I spent the weekend letting my brain percolate and ponder things, as I like to do. There are a lot of rhetorical questions floating around in my mind. If I choose to go with the shorter, better life, how much shorter are we talking? The first tumor was almost 3cm in a two and a half month period. I can only guess how long this one has been in progress. I had a CT scan back in November that was 'clean'. So, my guess is that it took this one ~ 8 months to reach 3 cm. The doc had told me back when we had the appt to discuss the MRI (before the PET scan) that if it was cancer we were dealing with then it was not raging out of control cancer, but just a smoldering slow burn cancer because it came back in a radiated area. That tends to slow the beast down. And I'm also curious as to how exactly it's going to kill me. Will it spread to my brain or other organs, shut them down, thus snuffing me? Will the tumor grow so big that it will shut off my airway, thus suffocating me? But they wouldn't let me suffocate, would they, they'd put the trach and the stomach tube in anyway until I pass? Or does cancer simply eat away at you until you no longer have the bodily strength to keep yourself alive? Besides all of these lovely contemplations, I was also thinking about practicalities, because hey, as most of you know, I AM OCD/list girl....
I have started papering Rochester with my health care proxy. Baby doll has the authority to pull the plug on me, if he can't do it, my mom is listed to step up to the plate for him. I'm working on my will. Sam has agreed to be the executor and I am also going to make her the beneficiary of my 401k plan. My mom is the beneficiary of my life insurance plan through work. Jamie has agreed to take over my house and my animals for me and my lawyer said the will can definitely stipulate that. Other than a few thousand in savings, I don't think I have any other assets or debts for that matter that make much of a difference. Outside of the will, I am making up a list of personal items that I would like Scott/Jamie/Sam to distribute. Scott gets the chaise, Kunkel gets the hammock, Sandi gets my armoire/jewelry, T gets my books/Kindle, Andy gets my foldout poker table with all the accessories, Justin gets my coin collection, etc. If anyone knows of anything I have that makes them think especially of me, that they would like as a keepsake, speak now and I'll put it on the list that I will be distributing. Meanwhile, Jamie gets the contents of the house besides what is on the list so if you think of something afterwards, you'll have to kick him in the shins for it. ;-)
I've been creaking around like a granny since Wednesday afternoon. Stairs are especially excruciating. I finally called Dr. B on Friday to find out what they did to me when I was under anesthesia because I was starting to freak out about how bad I felt. Turns out they had to give me a few extra doses of paralytic in order to get my jaw to relax enough for them to get in and get the biopsy. I guess this often leaves patients feeling like they were run over by a Mack truck. Once again, they couldn't have told me this before releasing me?? I was having a heart attack thinking I had accidentally overdosed on acetaminophen and the poisoning of my liver had begun, or the fact that a side effect of Vicodin is that it 'backs' you up and I thought my body was going toxic from that, or that my last tetanus shot was no good and they had given me lockjaw when they punctured my tongue to get the biopsy, or.......imagination can be both a wonderful and horrible thing.
Anyway, difficulty walking slowed me down for the weekend but I was super relieved to know what was causing it. I ended up canceling on the Comedy Club with Kim and Jamie. They came over to see me instead so that I wouldn't have to leave the house. We played some games, barbequed some chicken, and had a really good visit. Kim brought me some 'cheer up' gifts. I now have a beautiful, leather bound journal that I'm almost scared to write in. I'm going to have to figure out a really good use for it before a pen gets anywhere near it. She also brought me a gift card for Barnes & Noble. I want to buzz out there some time this week and check out their puzzle/game section. The game that the three of us played Friday night was called Name Five. I found it in my game chest, still in it's wrapper! I'm so glad I finally had some peeps to play it with and it has now been officially broken in. And Kim has now given me the means to find an all new game to torture people with. Bwah...ha...ha.
Saturday, baby doll and I had plans to hit Waterloo Outlet Mall and have a retail therapy session. I wasn't sure my legs were up for much but decided to give it a try. A bonus was that I could dope up on Vicodin to cover the muscle pain/spasms, and sleep all the way there and back again while he drove. It was slow going but we managed to hit a few stores. I wasn't really in the mood to buy much for myself. Paying retail when I know I can go to a billion different thrift stores and get good, cheap clothes makes it a bit of a turn-off for me to clothes shop at real stores, even if they are outlet stores. On the other hand, I have no problem buying retail for my incredibly hot man. J. Crew, Ralph Lauren, Tommy Hilfiger, Calvin Klein, Eddie Bauer.......we hit 'em all! It was fun making him play dress up for me and it was cool being able to have him try on some new and different colors that aren't in his usual wardrobe. And let me tell you, he made out like a bandit! I bought him five pairs of shorts, four really nice t-shirts, and four dressy shirts. He's totally styling! And what made it even better is that nobody had ever done that for him before. Taken him on a whirlwind (okay, we were turtle slow due to my legs but you know what I mean) shopping spree and buying an entire wardrobe for him and helping him update his style. He was tickled pink which made me feel on top of the world. :-) Have I mentioned how much I love this guy?
Meanwhile he was feeling left out so I let him buy me a really cute pair of Sketchers and I was in dire need of some new 8 x 8 pans for my baking frenzies. When in doubt, new kitchen stuff always makes me happy.
Today I was supposed to be driving to Oswego to visit my friend T. I already knew yesterday morning when I got up that my legs were likely not going to be up for an hour and a half drive each way to see her plus I'd have to cut way back on the pain killers if I was on the road. So, I had to bow out on her. Temporarily, of course, it will be rescheduled. So, my actual plan for today is to lay in bed for most of the day, dosing up on pain meds and hoping my legs feel well enough for a full day of work tomorrow.
The stitch is still in my tongue, and hurting, it's supposed to dissolve eventually but I have no idea how long that takes. My lip is still blown up, from what I can only assume were the clamps they used. The sores have scabbed over though and are starting to peel so at least I know that boo-boo is healing. Swallowing is still painful/difficult. Food is definitely getting stuck even more often than it was before. I've moved back to eating mostly liquids for the past four days. Alas, this means the 3 pounds I had gained have disappeared again. My scale said 115.0 this morning. T actually has some protein packets she's going to send me to see if they'll help bulk me up. I also have two half gallons of ice cream in my fridge. Right after I post this I will be making myself a milkshake.
My second opinion appointment is on Thursday at 12:45. I was seriously pissed when I got the call on Friday. I already have this Thursday off from work because honey bunny is having his final surgery on his hand and I'm supposed to be his 'person'. Un-fucking-believable that I have to miss it. You would think with all the other crap that fate has been throwing at me, it could have given me this one little scheduling thing. But no, I can't be there for my sweetie. His sister is going to take him instead. <sigh> At least he'll be dropped off at my place afterwards so that I can baby him to my heart's content. I will have to make due with that.
Meanwhile, other than the activities listed above, I spent the weekend letting my brain percolate and ponder things, as I like to do. There are a lot of rhetorical questions floating around in my mind. If I choose to go with the shorter, better life, how much shorter are we talking? The first tumor was almost 3cm in a two and a half month period. I can only guess how long this one has been in progress. I had a CT scan back in November that was 'clean'. So, my guess is that it took this one ~ 8 months to reach 3 cm. The doc had told me back when we had the appt to discuss the MRI (before the PET scan) that if it was cancer we were dealing with then it was not raging out of control cancer, but just a smoldering slow burn cancer because it came back in a radiated area. That tends to slow the beast down. And I'm also curious as to how exactly it's going to kill me. Will it spread to my brain or other organs, shut them down, thus snuffing me? Will the tumor grow so big that it will shut off my airway, thus suffocating me? But they wouldn't let me suffocate, would they, they'd put the trach and the stomach tube in anyway until I pass? Or does cancer simply eat away at you until you no longer have the bodily strength to keep yourself alive? Besides all of these lovely contemplations, I was also thinking about practicalities, because hey, as most of you know, I AM OCD/list girl....
I have started papering Rochester with my health care proxy. Baby doll has the authority to pull the plug on me, if he can't do it, my mom is listed to step up to the plate for him. I'm working on my will. Sam has agreed to be the executor and I am also going to make her the beneficiary of my 401k plan. My mom is the beneficiary of my life insurance plan through work. Jamie has agreed to take over my house and my animals for me and my lawyer said the will can definitely stipulate that. Other than a few thousand in savings, I don't think I have any other assets or debts for that matter that make much of a difference. Outside of the will, I am making up a list of personal items that I would like Scott/Jamie/Sam to distribute. Scott gets the chaise, Kunkel gets the hammock, Sandi gets my armoire/jewelry, T gets my books/Kindle, Andy gets my foldout poker table with all the accessories, Justin gets my coin collection, etc. If anyone knows of anything I have that makes them think especially of me, that they would like as a keepsake, speak now and I'll put it on the list that I will be distributing. Meanwhile, Jamie gets the contents of the house besides what is on the list so if you think of something afterwards, you'll have to kick him in the shins for it. ;-)
Thursday, July 18, 2013
July 18 - Part II
Okay, worst.phone.call.ever.
Just talked to Dr. C. The tumor is deep seated in the muscle. He used every instrument on hand in an effort to see it and he can't. It's that far in. But he says that he can feel it and the MRI and the PET scan both show it's there. He said he got as deep as he could to get a biopsy for it. Results will be back in 3-5 days. He said that he would think it's just radiated tissue except the PET scan shows that it's cancer and the fact that I'm in so much pain and am having a hard time even opening my jaw, points to the fact that it's a cancerous tumor.
So, it's located in the worst place possible. He said he can do surgery on it but I will lose my ability to swallow, to talk, to eat, to move my jaw, it will affect my airway, etc. I will need a feeding tube in my stomach for the rest of my life and I will be talking through a trach for the rest of my life. He said my quality of life will be extremely bad. On top of that, he said he can't guarantee that the surgery will be successful. He said it's a REALLY tough surgery. He said I could get a second opinion from Mayo or Sloan Kettering or Roswell - and at the mention of Roswell he went off on a tangent as he is wont to do and said they're having departmental upheavals at Roswell right now and he's never been super impressed with them so he wouldn't actually recommend them for a second opinion. Anyway, back on topic. He doesn't think I need to travel that far for a second opinion. He's going to set me up with an appointment with the robotic arm guy, Matt Miller, to give me a second opinion. I'm assuming that should happen within the next week or so. Although he said he's pretty sure that I am NOT a candidate for the robotic surgery at this point but that doesn't make Dr. Miller any less of a choice for a second opinion on cancerous tumors.
He said that since it's in an area that has already been radiated, neither radiation nor chemo will save me. But based on how badly my life will deteriorate with the surgery, he said that I may want to opt to have chemo to reduce the tumor for a while, extend my life for a limited amount of time, get my affairs in order, say my goodbyes, and that's that.
He said the choice is up to me.
This is so not fun.
William, our 75 year old Russian scientist at work, told me a story today. He said there were two cups of milk. A mouse was dropped into each cup of milk to drown them. The first mouse said oh well, there's nothing I can do, and so he drowned. The second mouse said screw that, and started kicking and swimming for all she's worth, turned the milk into butter, and escaped. Cute story but unfortunately I don't think I'm going to be making butter.
Just talked to Dr. C. The tumor is deep seated in the muscle. He used every instrument on hand in an effort to see it and he can't. It's that far in. But he says that he can feel it and the MRI and the PET scan both show it's there. He said he got as deep as he could to get a biopsy for it. Results will be back in 3-5 days. He said that he would think it's just radiated tissue except the PET scan shows that it's cancer and the fact that I'm in so much pain and am having a hard time even opening my jaw, points to the fact that it's a cancerous tumor.
So, it's located in the worst place possible. He said he can do surgery on it but I will lose my ability to swallow, to talk, to eat, to move my jaw, it will affect my airway, etc. I will need a feeding tube in my stomach for the rest of my life and I will be talking through a trach for the rest of my life. He said my quality of life will be extremely bad. On top of that, he said he can't guarantee that the surgery will be successful. He said it's a REALLY tough surgery. He said I could get a second opinion from Mayo or Sloan Kettering or Roswell - and at the mention of Roswell he went off on a tangent as he is wont to do and said they're having departmental upheavals at Roswell right now and he's never been super impressed with them so he wouldn't actually recommend them for a second opinion. Anyway, back on topic. He doesn't think I need to travel that far for a second opinion. He's going to set me up with an appointment with the robotic arm guy, Matt Miller, to give me a second opinion. I'm assuming that should happen within the next week or so. Although he said he's pretty sure that I am NOT a candidate for the robotic surgery at this point but that doesn't make Dr. Miller any less of a choice for a second opinion on cancerous tumors.
He said that since it's in an area that has already been radiated, neither radiation nor chemo will save me. But based on how badly my life will deteriorate with the surgery, he said that I may want to opt to have chemo to reduce the tumor for a while, extend my life for a limited amount of time, get my affairs in order, say my goodbyes, and that's that.
He said the choice is up to me.
This is so not fun.
William, our 75 year old Russian scientist at work, told me a story today. He said there were two cups of milk. A mouse was dropped into each cup of milk to drown them. The first mouse said oh well, there's nothing I can do, and so he drowned. The second mouse said screw that, and started kicking and swimming for all she's worth, turned the milk into butter, and escaped. Cute story but unfortunately I don't think I'm going to be making butter.
July 18
Man, you just can't take some people anywhere! Kunkel was my designated 'person' for my biopsy yesterday. She kicked things off by telling me my surgeon's ass looked damn fine in his scrubs. Say what?? She thinks he's a cutie-patootie. I told her that if he announced to her that she had cancer she wouldn't find him nearly attractive. (She agreed with this assessment.) She then stepped things up by whipping out her boob for the nurse in the back room so that she could verify it was poison ivy. (Okay, not her whole boob but I blushed and looked away quickly anyway!) Next thing you know the nurse is on the phone with her hubby asking him what home remedies he uses whenever he gets poison ivy so that she can pass along the tips to Kunkel. I'm telling you, if you ever need to get something done, Kunkel is your woman. She topped things off by flirting with my anesthesiologist post surgery. Turns out they're both 100% Italian, their parents come from the same part of Italy, and they both speak a little Italian. Those two were chatting like long lost friends while I'm laying there sucking on ice chips. Which actually wasn't a bad thing. I find it embarrassing to be the center of attention so it was nice that she was a diversion. Hmmmm......maybe I should start taking her to all my 'things'.........
Biospy went fine, I guess. I woke up so that means success, right? I have a stitch in the tip of my tongue (ow). I guess the clamps weren't enough to keep it out of the way. And I don't know what they did to the right side of my lip but it's all swollen and there's 4 white dots on the underside. Maybe the clamps did that (more ow)? And my throat is VERY sore (big ow!).
I wasn't allowed to eat yesterday, not sure I could have with the pain anyway so my scale is back down an entire pound. Super bummer. I now have an entire bottle of liquid Vicodin. I told them I had just picked up my new prescription on Tuesday, were the cops going to come after me if I picked up another prescription on Wednesday?? Obviously not because I'm happily sucking it down. Right after I took it this morning and things numbed up, I hurried up and drank two Carnation breakfast drinks (Let's start shortening that to CBD's, okay?). There was some pain but it was doable. My next dose of pain meds is at 11:15 so I'll suck down two more CBD's for lunch.
My tongue and lip were hurting as well so I dug through my bin of meds from last year and found the lidocaine gel I had been using. Totally did the trick! I noticed it's almost gone but it had a refill on it from a year ago so I called it in. It wasn't supposed to be ready until 10:30 today but when Kunkel went to Weggie's to pick up the liquid Vicodin for me last night, they already had the bottle of lidocaine ready. So, I'm all set with pain management drugs for some time to come.
Meanwhile, Dr. C cruised past my bed while I was sucking ice chips and he said he had to run upstairs but he would be back down to talk to me about what he found. Then the next thing I know he called down to say that he would just call me today to talk to me. So, here I sit. Waiting for that phone call.
I wasn't actually going to post until after the phone call but I've received a number of individual inquiries about how the biopsy went so I figured I should let everyone know I survived. Heck, I'm even hard at work today (kinda) even though I feel like I ran a 5k yesterday. Which I need to ask Dr. C about. Why do my leg muscles ache so bad? They started aching as soon as I got home yesterday. What in the world did they do to me while I was out??
Biospy went fine, I guess. I woke up so that means success, right? I have a stitch in the tip of my tongue (ow). I guess the clamps weren't enough to keep it out of the way. And I don't know what they did to the right side of my lip but it's all swollen and there's 4 white dots on the underside. Maybe the clamps did that (more ow)? And my throat is VERY sore (big ow!).
I wasn't allowed to eat yesterday, not sure I could have with the pain anyway so my scale is back down an entire pound. Super bummer. I now have an entire bottle of liquid Vicodin. I told them I had just picked up my new prescription on Tuesday, were the cops going to come after me if I picked up another prescription on Wednesday?? Obviously not because I'm happily sucking it down. Right after I took it this morning and things numbed up, I hurried up and drank two Carnation breakfast drinks (Let's start shortening that to CBD's, okay?). There was some pain but it was doable. My next dose of pain meds is at 11:15 so I'll suck down two more CBD's for lunch.
My tongue and lip were hurting as well so I dug through my bin of meds from last year and found the lidocaine gel I had been using. Totally did the trick! I noticed it's almost gone but it had a refill on it from a year ago so I called it in. It wasn't supposed to be ready until 10:30 today but when Kunkel went to Weggie's to pick up the liquid Vicodin for me last night, they already had the bottle of lidocaine ready. So, I'm all set with pain management drugs for some time to come.
Meanwhile, Dr. C cruised past my bed while I was sucking ice chips and he said he had to run upstairs but he would be back down to talk to me about what he found. Then the next thing I know he called down to say that he would just call me today to talk to me. So, here I sit. Waiting for that phone call.
I wasn't actually going to post until after the phone call but I've received a number of individual inquiries about how the biopsy went so I figured I should let everyone know I survived. Heck, I'm even hard at work today (kinda) even though I feel like I ran a 5k yesterday. Which I need to ask Dr. C about. Why do my leg muscles ache so bad? They started aching as soon as I got home yesterday. What in the world did they do to me while I was out??
Tuesday, July 16, 2013
July 16
I sent an entire page of questions to Doc B yesterday. She called me to discuss.
Q: Dr. C said that there’s a likelihood that I would lose the
ability to swallow, resulting in a permanent feeding tube in my stomach. Did he
just mean food or will I be unable to swallow my own saliva? I’m suddenly
picturing myself lurching around constantly drooling.
A: There will definitely be some drooling initially but it will not be permanent. And Dr. C is actually still holding onto the hope that the feeding tube won't be permanent either.
Q: Dr. C said he was going to contact Dr. A to see what
she recommends as far as going through radiation again. Any idea if he spoke to
her yet or does he need to wait until after the biopsy/mapping?
A: Dr. C is not going to contact Dr. A until after the biopsy/mapping is done tomorrow.
Q: Last summer after my glossectomy, there were milestones to
reach before I could be released from the hospital, like getting the staples
out of my arm, getting the drain tubes out of my neck, getting the feeding tube
out, getting the trach out. You said the trach will likely be in longer this
time, does that mean a longer hospital stay or would you actually send me home
with the trach still in? Any idea how long this hospital stay might be? Last
time I think it was 9 days.
A: People can be sent home with the trach still in, this will not delay release from the hospital. Unclear how long the hospital stay will be until we see what we're dealing with.
Q: Last time I was in ICU the first day or two, will that be
what happens this time as well?
A: Yes, the first couple of days will be spent in the ICU.
Q: Can you tell at all from the MRI or the PET scan
the size of the ‘active’ area or do you really have no idea until after the
biopsy? Are we talking the size of a pea, a quarter, an orange?
A: The tumor looks to be about 3 cm or the size of a half dollar.
Q: Last time I was out of work for 6 weeks. Mostly,
I think, due to the arm graft. Since there is no plastic surgery involved this
time around do you think my length of time out of work will be shorter or are
there other considerations I don’t know about that might make it longer?
A: We're sorry this wasn't made clear to you. There IS plastic surgery involved. Dr. Vega will once again be in on this. Anytime a 'flap' is put into place, a plastic surgeon is involved. Even though there will not be a skin graft to cover up where they take the flesh from your thigh, a piece of plastic will be inserted in place of the flesh that is taken. And you should count on taking 6-8 weeks off from work again, especially since you are run down (yes I took offense to that statement when she said it!) from your prior battle with cancer.
Note: And on a side note, I’m having some difficulty swallowing. I
noticed it some time between the MRI and the PET scan and it’s a little worse
each day. I’m assuming it’s something that will be noted during the biopsy on
Wednesday but I wanted to bring attention to it now.
A: Yes, you have a 3 cm tumor in your throat. This would account for difficulty swallowing, it's not in your head.
Monday, July 15, 2013
July 15
Okay, I took the weekend to 'get right' with things. I'm feeling okay. Not as optimistic as last summer but hey, I think there's good reason for that. Since the cancer returned in an area that has already gone through radiation, I think I'm pretty much SOL. So, I'll get through whatever I need to get through and do the best that I can with however things end up.
I spoke to Jamie about taking over my house and furballs if I kick it. He's in. He's not happy that I need to make such a request, but he's in. So, I have an appointment with a lawyer tonight to start getting a will in place and to see what can legally be drawn up to make the house thing happen. There's probably other stuff that I need to do or at least think about. Hopefully the lawyer will be able to give me some guidance.
Had a serious talk with my babydoll on Friday night. Told him that I wouldn't blame him if he wanted to bow out. We've only been dating 6 months. Asking him to deal with someone recovering from cancer is a lot different than asking him to deal with someone with active cancer. He told me in no uncertain terms that he's in 100%. I love that man to pieces.
Dr. B asked me last Thursday if I needed a refill on the Vicodin. I told her I had just gotten it filled and thought I was all set. She seemed reluctant to believe me. Today I decided it probably wasn't a bad idea to get it refilled this week in preparation for the biopsy on Wednesday. I imagine having them cut a chunk of the base of my tongue/throat is going to hurt. I talked to Rachel the nurse this morning about picking up a script while I am there on Wednesday. She seemed to think I was really going to want it sooner than that so I picked it up today to keep her happy. I'm suddenly getting the feeling that the docs/nurses want me WELL supplied with pain meds. It's kind of worrying me!
Today I filled out an on-line medical history. Tomorrow I have to call the surgery center after 11:00 to find out when my procedure is scheduled for. I took all of Wednesday off from work. The post-op appointment is currently set up for 7/31 although front desk Becky said she may try to pull that in. She just wanted to get something on the calendar now because Dr. C books up so fast.
I also sent an entire Word document to Cathy, my inside contact at Dr. C's office, with a TON of questions for Dr. B/Dr. C to start thinking about. For example: Dr. C said that there's a strong likelihood of me losing the ability to swallow, hence the feeding tube, but I started wondering last night, what about my saliva? I'm assuming I'll still be doing some swallowing, right? Can you imagine me lurching around, drooling constantly?? UGH. These are the types of thoughts that were rattling around in my brain all weekend.
Fun stuff:
Tonight I'm having dinner with my honey bunny at the Crab Shack before my lawyer appointment. Friday it's off to the Comedy Club with Jamie and our mutual friend Kim who is in town this month. Saturday, Scott had mentioned doing a little retail therapy at Waterloo Outlet although the weather is looking pretty sweet, I might see if I can convince him that a round of golf would be more fun.
And this morning I received a request from Scott's niece for some sweet treats. My chocolate chip cookies and 7 layer bars seemed to have been a big hit at her graduation party! Instead of the way to my heart being through my stomach.....if you really want to get on my good side, ask me to cook/bake for you. She made my week! Hopefully she and her hubby are available on Thursday night so that Scott and I can kick their ass at some cards. The beating, of course, won't bother them because they'll be all doped up on a sugar high from the goodies I will bring. :-)
I spoke to Jamie about taking over my house and furballs if I kick it. He's in. He's not happy that I need to make such a request, but he's in. So, I have an appointment with a lawyer tonight to start getting a will in place and to see what can legally be drawn up to make the house thing happen. There's probably other stuff that I need to do or at least think about. Hopefully the lawyer will be able to give me some guidance.
Had a serious talk with my babydoll on Friday night. Told him that I wouldn't blame him if he wanted to bow out. We've only been dating 6 months. Asking him to deal with someone recovering from cancer is a lot different than asking him to deal with someone with active cancer. He told me in no uncertain terms that he's in 100%. I love that man to pieces.
Dr. B asked me last Thursday if I needed a refill on the Vicodin. I told her I had just gotten it filled and thought I was all set. She seemed reluctant to believe me. Today I decided it probably wasn't a bad idea to get it refilled this week in preparation for the biopsy on Wednesday. I imagine having them cut a chunk of the base of my tongue/throat is going to hurt. I talked to Rachel the nurse this morning about picking up a script while I am there on Wednesday. She seemed to think I was really going to want it sooner than that so I picked it up today to keep her happy. I'm suddenly getting the feeling that the docs/nurses want me WELL supplied with pain meds. It's kind of worrying me!
Today I filled out an on-line medical history. Tomorrow I have to call the surgery center after 11:00 to find out when my procedure is scheduled for. I took all of Wednesday off from work. The post-op appointment is currently set up for 7/31 although front desk Becky said she may try to pull that in. She just wanted to get something on the calendar now because Dr. C books up so fast.
I also sent an entire Word document to Cathy, my inside contact at Dr. C's office, with a TON of questions for Dr. B/Dr. C to start thinking about. For example: Dr. C said that there's a strong likelihood of me losing the ability to swallow, hence the feeding tube, but I started wondering last night, what about my saliva? I'm assuming I'll still be doing some swallowing, right? Can you imagine me lurching around, drooling constantly?? UGH. These are the types of thoughts that were rattling around in my brain all weekend.
Fun stuff:
Tonight I'm having dinner with my honey bunny at the Crab Shack before my lawyer appointment. Friday it's off to the Comedy Club with Jamie and our mutual friend Kim who is in town this month. Saturday, Scott had mentioned doing a little retail therapy at Waterloo Outlet although the weather is looking pretty sweet, I might see if I can convince him that a round of golf would be more fun.
And this morning I received a request from Scott's niece for some sweet treats. My chocolate chip cookies and 7 layer bars seemed to have been a big hit at her graduation party! Instead of the way to my heart being through my stomach.....if you really want to get on my good side, ask me to cook/bake for you. She made my week! Hopefully she and her hubby are available on Thursday night so that Scott and I can kick their ass at some cards. The beating, of course, won't bother them because they'll be all doped up on a sugar high from the goodies I will bring. :-)
Friday, July 12, 2013
July 12 - Part II
Yeesh. After being such a slacker for a while on this thing, I'm suddenly full of crap to write about and peeps are getting multiple posts a day! Aren't you guys lucky? :-)
Had my pre-op this afternoon, and want to puke up as much info as I can before it all falls out the other side of my head. So yeah, biopsy next Wednesday and then we get to start scheduling the surgery. While he has me under the anesthesia he'll be able to feel around and map out exactly how big this thing is which will then dictate how we proceed in the surgery department. This time the flesh for the flap will be taken from my outer thigh. It will be in the shape of a canoe and it looked like the incision is going to be 5-6 inches long. He said they then just sew the edges back up, no skin grafts from other areas of my body needed this time.
Dr. B (female counterpart of Dr. C) said that this flap is going to be bigger and thicker and deeper than the last one so it's going to take longer for the swelling to go down. This means the trach is going to be in longer. I told her there had better be a huge supply of Ativan on hand if that's the case because I really hate the trach. Not sure how this affects the length of the hospital stay. Will they keep me in the hospital for as long as the trach is in or will they send me home with it? I should probably start a new list of questions for round 2 of this lovely adventure.
Meanwhile, I asked Dr. C about eating and talking with even more of my tongue replaced with 'dead' flesh. He said there's a strong likelihood that I will be eating through a feeding tube implanted in my stomach for the rest of my life. He said when that much of your tongue is removed, you lose the ability to swallow. Okay, whatever. I'm still not really tasting food as it is so after a year of not enjoying eating, I guess I can't cry over that too much. Although I wonder how gross a feeding tube is and what myriad of problems it will bring. ie: Will it be a magnet for infections? Does it get clogged? Is it something I'm going to have to clean every day? Does it hurt?? Oooh....and on the bright side, can I simply dump a couple of shots of tequila in it and get instantly drunk?? Man, I could have some fun with this!
He said speech is usually okay. He said worst case, I could be talking through a trach the rest of my life but he said that speech normally comes back, no problem. So I'm going to try not to worry about that one.
Dr. C said that some people wonder why we can't just radiate the new growth instead of surgically removing it. He said that since the area has already gone through radiation and the new growth happened anyway, surgical removal is necessary. What he didn't seem sure about is whether there is any point in putting me through follow up radiation again after the surgery. He's going to call Dr. A and see what her opinion is about that.
He started talking about splitting my face again. I asked him if that meant the robotic arm guy was off the table. He said no, not necessarily. It's still an option. I kind of get the feeling that he's a little excited about performing this surgery. I told Kunkel that if after the biopsy, Dr. C tells me that he can do a better job at restoring functionality by splitting my face than the robotic arm guy can, then I'm going to go ahead and let him split my face. I'd much rather be able to eat and talk than worry about looking like a monster.
I've had to pause in this blog 3-4 times now to run over to Kunkel's desk and verify if she remembers some of these salient details. She's having a hard time too. They just throw so much info at you! We've decided that from here on out we're going to whip out our iPhones and start recording these appointments so that we can re-listen as necessary. And if the docs don't like that then we're going to start dragging 12 people to these appointments so that we have a ton of ears listening to the info that's given.
Okay, that's all of the appointment that I can remember for now. If anything else comes bubbling to the surface, I'll post about it tomorrow. On top of contacting a lawyer, and getting some life details straightened around, I really need to research a career that will allow me to stay home if my body becomes any messier. Like writing sci-fi/horror novels. I've always wanted to do that.
Had my pre-op this afternoon, and want to puke up as much info as I can before it all falls out the other side of my head. So yeah, biopsy next Wednesday and then we get to start scheduling the surgery. While he has me under the anesthesia he'll be able to feel around and map out exactly how big this thing is which will then dictate how we proceed in the surgery department. This time the flesh for the flap will be taken from my outer thigh. It will be in the shape of a canoe and it looked like the incision is going to be 5-6 inches long. He said they then just sew the edges back up, no skin grafts from other areas of my body needed this time.
Dr. B (female counterpart of Dr. C) said that this flap is going to be bigger and thicker and deeper than the last one so it's going to take longer for the swelling to go down. This means the trach is going to be in longer. I told her there had better be a huge supply of Ativan on hand if that's the case because I really hate the trach. Not sure how this affects the length of the hospital stay. Will they keep me in the hospital for as long as the trach is in or will they send me home with it? I should probably start a new list of questions for round 2 of this lovely adventure.
Meanwhile, I asked Dr. C about eating and talking with even more of my tongue replaced with 'dead' flesh. He said there's a strong likelihood that I will be eating through a feeding tube implanted in my stomach for the rest of my life. He said when that much of your tongue is removed, you lose the ability to swallow. Okay, whatever. I'm still not really tasting food as it is so after a year of not enjoying eating, I guess I can't cry over that too much. Although I wonder how gross a feeding tube is and what myriad of problems it will bring. ie: Will it be a magnet for infections? Does it get clogged? Is it something I'm going to have to clean every day? Does it hurt?? Oooh....and on the bright side, can I simply dump a couple of shots of tequila in it and get instantly drunk?? Man, I could have some fun with this!
He said speech is usually okay. He said worst case, I could be talking through a trach the rest of my life but he said that speech normally comes back, no problem. So I'm going to try not to worry about that one.
Dr. C said that some people wonder why we can't just radiate the new growth instead of surgically removing it. He said that since the area has already gone through radiation and the new growth happened anyway, surgical removal is necessary. What he didn't seem sure about is whether there is any point in putting me through follow up radiation again after the surgery. He's going to call Dr. A and see what her opinion is about that.
He started talking about splitting my face again. I asked him if that meant the robotic arm guy was off the table. He said no, not necessarily. It's still an option. I kind of get the feeling that he's a little excited about performing this surgery. I told Kunkel that if after the biopsy, Dr. C tells me that he can do a better job at restoring functionality by splitting my face than the robotic arm guy can, then I'm going to go ahead and let him split my face. I'd much rather be able to eat and talk than worry about looking like a monster.
I've had to pause in this blog 3-4 times now to run over to Kunkel's desk and verify if she remembers some of these salient details. She's having a hard time too. They just throw so much info at you! We've decided that from here on out we're going to whip out our iPhones and start recording these appointments so that we can re-listen as necessary. And if the docs don't like that then we're going to start dragging 12 people to these appointments so that we have a ton of ears listening to the info that's given.
Okay, that's all of the appointment that I can remember for now. If anything else comes bubbling to the surface, I'll post about it tomorrow. On top of contacting a lawyer, and getting some life details straightened around, I really need to research a career that will allow me to stay home if my body becomes any messier. Like writing sci-fi/horror novels. I've always wanted to do that.
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