Some
good news on the bureaucracy front. As annoyed as I am with my
employer for a variety of reasons at the moment, they do seem to do
disability right. I filed a claim yesterday for my absence to begin
Friday (through April 30, 2014) and they have a company that expedites
all that stuff and takes in all the supplemental checks from the state
on my behalf, and my paychecks will continue to arrive as usual via
direct deposit, and they will be the same size, for the entire time I'm
out. With Bob only working half time and being a student right now,
this is a huge load off our minds.
Wednesday, October 30, 2013
Monday, October 28, 2013
Breathing a little easier.
That's literally true.
Note for those who don't read on FB - if you want to come see me in the next few months you MUST have a current flu vaccination for this season. I can't take the risk, and I (sadly) can't risk being around kids. I can trust adults to wash their hands and not sneeze on me (or whatever), but the stakes are too high for me right now to risk kid energy and kid germs. Note that it takes a full two weeks for you to reach full immunity with the flu shot. I cannot get one myself until this current issue is resolved. Even if you don't plan to see me, you should still get a flu shot. :) This has been going around the webs today, and I think it's good information for people who are worried about vaccination with all the B.S. that's been going around the web lately - http://www.redwineandapplesauce.com/2013/10/28/setting-the-record-straight-dubunking-all-the-flu-vaccine-myths/
The process of getting oxygen support was interesting - they cleared me to leave the hospital but I couldn't go until a portable tank was delivered to my room. The way it works is the medical supply company delivered an emergency tank with a four hour supply to my room, and then followed us all the way home (we live about 60 miles from the hospital) to install a big oxygen concentrator machine in our dining room with two 50 foot tubes that basically keep me on a leash around the house. He also left me with smaller, 7 pound canisters and a backpack to carry one at a time in.
When we went back out to pick up prescriptions and food on Saturday evening I took one of the emergency tanks with me. Those work on negative pressure - they only deliver oxygen when I inhale through my nose. The concentrator delivers a steady stream at steady pressure.
The way it's worked out is thanks to the weirdly skinny and tall nature of our house, the fifty foot tube is enough to get from the dining room down to the couch, and up into the master bedroom and even into the shower if I need it, so I haven't had to use the rescue tanks or lug them up and down the stairs at all, which is nice.
I slept with the oxygen on Saturday night, but other than that really haven't needed it except to take the stairs (both up and down). I spent most of yesterday and today in my office (same floor as the kitchen) and per doctors orders have been getting up once every hour or so to work on my breathing with the incentive thingy-whose-real-name-I-can't-remember, and do 5-10 minutes of "comfortable" activity. So that's amounted to making a snack or putting my dishes in the dishwasher, starting to organize my pill bottles for the next round of chemo, some small picking up and shuffling of crap around my office. I'm moving a little faster today and not getting out of breath, but I'll continue to use the concentrator for anything involving the stairs until I can do that without breathing heavily, and I don't intend to leave the house until I'm done with my course of tamiflu and antibiotics, and my fancy new face mask has arrived - I ordered a pack of those generic paper ones they give away at the hospital, and a fancier one with exhalation vents which I hope will be comfortable for public use, so I can do things like go to the movies or the grocery store with more protection for my lungs.
At that point I'll start venturing out with the mask and the rescue tank and see how I do.
I'm spending this week really (for real, I promise) doing the stuff I need to do so I can feel comfortable shutting down my work email client on Friday and not opening it again for several months. This morning coincided with open enrollment starting for benefits for next year. Tomorrow I'll start the disability stuff. I've killed most of the meetings on my calendar, but am keeping a few open so I can do an official handoff by phone on to close a few open loops and say goodbye for now to the people I work closely with.
I expect things to be quiet for the next few days. I'll start having followup visits to assess when I'm ready to start chemo and get that node biopsied early next week. Otherwise I've got nothing to do but get better.
Note for those who don't read on FB - if you want to come see me in the next few months you MUST have a current flu vaccination for this season. I can't take the risk, and I (sadly) can't risk being around kids. I can trust adults to wash their hands and not sneeze on me (or whatever), but the stakes are too high for me right now to risk kid energy and kid germs. Note that it takes a full two weeks for you to reach full immunity with the flu shot. I cannot get one myself until this current issue is resolved. Even if you don't plan to see me, you should still get a flu shot. :) This has been going around the webs today, and I think it's good information for people who are worried about vaccination with all the B.S. that's been going around the web lately - http://www.redwineandapplesauce.com/2013/10/28/setting-the-record-straight-dubunking-all-the-flu-vaccine-myths/
The process of getting oxygen support was interesting - they cleared me to leave the hospital but I couldn't go until a portable tank was delivered to my room. The way it works is the medical supply company delivered an emergency tank with a four hour supply to my room, and then followed us all the way home (we live about 60 miles from the hospital) to install a big oxygen concentrator machine in our dining room with two 50 foot tubes that basically keep me on a leash around the house. He also left me with smaller, 7 pound canisters and a backpack to carry one at a time in.
When we went back out to pick up prescriptions and food on Saturday evening I took one of the emergency tanks with me. Those work on negative pressure - they only deliver oxygen when I inhale through my nose. The concentrator delivers a steady stream at steady pressure.
The way it's worked out is thanks to the weirdly skinny and tall nature of our house, the fifty foot tube is enough to get from the dining room down to the couch, and up into the master bedroom and even into the shower if I need it, so I haven't had to use the rescue tanks or lug them up and down the stairs at all, which is nice.
I slept with the oxygen on Saturday night, but other than that really haven't needed it except to take the stairs (both up and down). I spent most of yesterday and today in my office (same floor as the kitchen) and per doctors orders have been getting up once every hour or so to work on my breathing with the incentive thingy-whose-real-name-I-can't-remember, and do 5-10 minutes of "comfortable" activity. So that's amounted to making a snack or putting my dishes in the dishwasher, starting to organize my pill bottles for the next round of chemo, some small picking up and shuffling of crap around my office. I'm moving a little faster today and not getting out of breath, but I'll continue to use the concentrator for anything involving the stairs until I can do that without breathing heavily, and I don't intend to leave the house until I'm done with my course of tamiflu and antibiotics, and my fancy new face mask has arrived - I ordered a pack of those generic paper ones they give away at the hospital, and a fancier one with exhalation vents which I hope will be comfortable for public use, so I can do things like go to the movies or the grocery store with more protection for my lungs.
At that point I'll start venturing out with the mask and the rescue tank and see how I do.
I'm spending this week really (for real, I promise) doing the stuff I need to do so I can feel comfortable shutting down my work email client on Friday and not opening it again for several months. This morning coincided with open enrollment starting for benefits for next year. Tomorrow I'll start the disability stuff. I've killed most of the meetings on my calendar, but am keeping a few open so I can do an official handoff by phone on to close a few open loops and say goodbye for now to the people I work closely with.
I expect things to be quiet for the next few days. I'll start having followup visits to assess when I'm ready to start chemo and get that node biopsied early next week. Otherwise I've got nothing to do but get better.
Saturday, October 26, 2013
Home
Influenza A finally showed up from the broncoscopy.
Also, I kept quiet about something that could have scared the hell out of a lot of people I spent the weekend with until I was officially cleared. They flagged me as a possible active TB case on Wednesday night, and I've actually been in an isolation, negative pressure room since Wednesday. They cleared me at 2pm. It took another few hours for the oxygen tank to be delivered, and then a while longer at home to get some more O2 support equipment installed at home and pick up my drugs.
So I'm home, with antibiotics, tamiflu, prednisone, oxygen tanks, and I'm dead tired but pretty happy at this point.
I expect to not be doing much for the next couple of days, or leaving the house except for medical appointments in the next week.
Also, I kept quiet about something that could have scared the hell out of a lot of people I spent the weekend with until I was officially cleared. They flagged me as a possible active TB case on Wednesday night, and I've actually been in an isolation, negative pressure room since Wednesday. They cleared me at 2pm. It took another few hours for the oxygen tank to be delivered, and then a while longer at home to get some more O2 support equipment installed at home and pick up my drugs.
So I'm home, with antibiotics, tamiflu, prednisone, oxygen tanks, and I'm dead tired but pretty happy at this point.
I expect to not be doing much for the next couple of days, or leaving the house except for medical appointments in the next week.
Friday, October 25, 2013
hospital, day five
Slept better last night, only a couple of major coughing fits and I stayed plugged in to the O2 so I knew I wouldn't crash. I've got a bunch of different meds on different schedules and so they never let me sleep more than about 4.5 hours in a row anyway.
They've ruled out a bunch of stuff from the broncoscopy, but still haven't found a source for the fevers. I didn't go over 99 today though. They weighed me this morning and I have dropped 15 pounds since October 15.
Since I'm officially voluntarily on the O2 I did a little test this morning. I unplugged myself at 9am and just sat in bed. at 9:05 I dropped to 89% (which sets the lights blinking and the alarm off on the monitor). I bounced back up and down for about 10 minutes and then stayed at about 88% on room air for the next 15 minutes.
So, I've been back on the O2 for a good chunk of the day. The pulmonary people couldn't decide if I was getting worse because I need more meds, or because I've been in bed for five days now (really almost a solid week now - I was minimally active all weekend despite the road trip). They did decide it's safe for me to start using the incentive breathing thing (you inhale as deep as you can to keep a plastic cup suspended in a tube) so I've been doing that every hour all afternoon. Trying the no O2 test again now. So far it's better - holding steady at 96% now with only two drops below 90% in the last 20 minutes. I will stay on the O2 tonight for sleep. It seems silly not to if only just to keep the damned alarm from going off even if I'm technically safe.
Got the breast biopsy back and there is still cancer there, so I will be starting the next 12 weeks of chemo as soon as this breathing thing is resolved and they're able to schedule the biopsy on the thing in my lung. I hope it's soon for multiple reasons - it would really suck to let the bastard grow up again because I can't handle the treatment right now.
The great highlight of my day was that they finally let me take a shower. I haven't done that since Sunday night, and with all the fevers and incontinence, this has been absolutely miserable. They've done a couple of "bed baths" where they basically wipe you down with warmed up baby wipes. It helped, but nothing like running water and soap. I am clean and that alone makes me feel better than I have in days.
The oncology team is ready to let me go tomorrow. The pulmonary team said maybe Sunday.
As I've been typing this the low O2 alarm has gone off about five times and the frequency is getting higher. So I guess I'm back on it then.
They've ruled out a bunch of stuff from the broncoscopy, but still haven't found a source for the fevers. I didn't go over 99 today though. They weighed me this morning and I have dropped 15 pounds since October 15.
Since I'm officially voluntarily on the O2 I did a little test this morning. I unplugged myself at 9am and just sat in bed. at 9:05 I dropped to 89% (which sets the lights blinking and the alarm off on the monitor). I bounced back up and down for about 10 minutes and then stayed at about 88% on room air for the next 15 minutes.
So, I've been back on the O2 for a good chunk of the day. The pulmonary people couldn't decide if I was getting worse because I need more meds, or because I've been in bed for five days now (really almost a solid week now - I was minimally active all weekend despite the road trip). They did decide it's safe for me to start using the incentive breathing thing (you inhale as deep as you can to keep a plastic cup suspended in a tube) so I've been doing that every hour all afternoon. Trying the no O2 test again now. So far it's better - holding steady at 96% now with only two drops below 90% in the last 20 minutes. I will stay on the O2 tonight for sleep. It seems silly not to if only just to keep the damned alarm from going off even if I'm technically safe.
Got the breast biopsy back and there is still cancer there, so I will be starting the next 12 weeks of chemo as soon as this breathing thing is resolved and they're able to schedule the biopsy on the thing in my lung. I hope it's soon for multiple reasons - it would really suck to let the bastard grow up again because I can't handle the treatment right now.
The great highlight of my day was that they finally let me take a shower. I haven't done that since Sunday night, and with all the fevers and incontinence, this has been absolutely miserable. They've done a couple of "bed baths" where they basically wipe you down with warmed up baby wipes. It helped, but nothing like running water and soap. I am clean and that alone makes me feel better than I have in days.
The oncology team is ready to let me go tomorrow. The pulmonary team said maybe Sunday.
As I've been typing this the low O2 alarm has gone off about five times and the frequency is getting higher. So I guess I'm back on it then.
Thursday, October 24, 2013
hospital, day four
Not much to report. They put a giant HEPA filter in my room last night, but it dried out the air and made my cough worse, so I went back on the oxygen because they can add a humidifier to it and that helped a bit.
The bronchoscopy was scheduled for 4pm, and they wouldn't let me eat all day or have any water after 10am. I haven't been hungry so the food wasn't much of an issue, but being thirsty for several hours was really unpleasant. I slept most of the day. And then they didn't actually get me in for the procedure until 5:30.
I thought they were going to knock me out for it, but they didn't. I was sedated, but totally aware of what was going on. They prepped me by having me inhale lidocaine through a nebulizer, and then squirting it directly on the back of my throat, and then swabbing it around the back of my throat with gauze. It tastes terrible, and my gag reflex wouldn't die (which was the whole point) so that was pretty miserable. Then they stuck the scope in and poked around for a while. The monitor was right by my face so I could see the inside of my lungs as he was doing it.
I got back to my room around 8 and ordered dinner. And that's about it.
I'm starting to lose track of time in here. When I called Bob he asked about the biopsy results which were supposed to be back today. I have no clue.
Hoping tomorrow will be a day of information on many fronts.
The bronchoscopy was scheduled for 4pm, and they wouldn't let me eat all day or have any water after 10am. I haven't been hungry so the food wasn't much of an issue, but being thirsty for several hours was really unpleasant. I slept most of the day. And then they didn't actually get me in for the procedure until 5:30.
I thought they were going to knock me out for it, but they didn't. I was sedated, but totally aware of what was going on. They prepped me by having me inhale lidocaine through a nebulizer, and then squirting it directly on the back of my throat, and then swabbing it around the back of my throat with gauze. It tastes terrible, and my gag reflex wouldn't die (which was the whole point) so that was pretty miserable. Then they stuck the scope in and poked around for a while. The monitor was right by my face so I could see the inside of my lungs as he was doing it.
I got back to my room around 8 and ordered dinner. And that's about it.
I'm starting to lose track of time in here. When I called Bob he asked about the biopsy results which were supposed to be back today. I have no clue.
Hoping tomorrow will be a day of information on many fronts.
Wednesday, October 23, 2013
hospital, day three
Still here. Had a really really bad night. I've been having constant, low level nose bleeds since I started chemo, and have basically been blowing giant balls of mucous and blood clots out of my sinuses several times a day for the last few months. A huge one developed last night and basically blocked me entirely and I woke up gasping for air and with all the monitors and alarms going off and my levels dropped down to the low 60s. It took about an hour to recover from that, and then I spiked a fever - I normally run at at 97.9, and hadn't popped up higher than 99.2 at any point in this experience (they are taking my temp/blood pressure at least 6 times every 24 hours), and I hit 102.9 at about 10 this morning.
So now I'm here until Friday. Things did get better this afternoon though. For the first time since Friday I was able to change position in bed without triggering a massive coughing fit. Leasha and Bob came by for a while and I was able to talk without coughing a whole bunch, although to be fair I think I'm probably adapting my breathing a little bit to modulate that. Either way, not coughing as much has been great for two big reasons. 1) not coughing and 2) stress incontinence from the coughing. I'm really freaking tired of adult diapers and sitting in my own urine all day.
They sent an occupational therapist to see me today and she was really happy with where I'm at strengthwise. The biggest deal is making sure I'm able to get up off the toilet and clean myself properly, which is all fine. It just makes me totally out of breath. The physical therapist came by as well. We went for a walk and up and down a flight of stairs. My oxygen level didn't drop below 90, which is good. My pulse went up to 139, which ain't. At rest it's now about 105, which is better than yesterday but still not good.
The lung team came by this afternoon and because of that fever and the stuff that isn't improving, they are going to do a bronchial scope tomorrow. So they will send this scope down my throat and into my lungs, spray saline in there, look around, get as much of the saline back out as they can, (some sort of vacuum, I guess?) and send that out for testing.
They are also going to be looking at a nodule that they found in my lung during the CT scan yesterday. Apparently it was there on my PET scan from July 1. It didn't light up the way my tumor or any of the lymph nodes did, but it's there. It's not an apples to apples comparison, but it looks like it might be a little bigger now. Unfortunately it's not in a place where they could snip off a sample while they are in there tomorrow, too high up. It could be nothing - lots of people have them. Scar from an old infection, or it could be more cancer. They'll assess what they can tomorrow and then I'll have to come back in a week or two when the rest of this is resolved and they'll do a CT guided biopsy of it to confirm. For that, they'll just poke a needle straight into it from my back. They just don't want to poke a new hole until everything else stabilizes.
I'm trying hard not to flip out about the possibilities there. I am less successful than I'd like to be.
So now I'm here until Friday. Things did get better this afternoon though. For the first time since Friday I was able to change position in bed without triggering a massive coughing fit. Leasha and Bob came by for a while and I was able to talk without coughing a whole bunch, although to be fair I think I'm probably adapting my breathing a little bit to modulate that. Either way, not coughing as much has been great for two big reasons. 1) not coughing and 2) stress incontinence from the coughing. I'm really freaking tired of adult diapers and sitting in my own urine all day.
They sent an occupational therapist to see me today and she was really happy with where I'm at strengthwise. The biggest deal is making sure I'm able to get up off the toilet and clean myself properly, which is all fine. It just makes me totally out of breath. The physical therapist came by as well. We went for a walk and up and down a flight of stairs. My oxygen level didn't drop below 90, which is good. My pulse went up to 139, which ain't. At rest it's now about 105, which is better than yesterday but still not good.
The lung team came by this afternoon and because of that fever and the stuff that isn't improving, they are going to do a bronchial scope tomorrow. So they will send this scope down my throat and into my lungs, spray saline in there, look around, get as much of the saline back out as they can, (some sort of vacuum, I guess?) and send that out for testing.
They are also going to be looking at a nodule that they found in my lung during the CT scan yesterday. Apparently it was there on my PET scan from July 1. It didn't light up the way my tumor or any of the lymph nodes did, but it's there. It's not an apples to apples comparison, but it looks like it might be a little bigger now. Unfortunately it's not in a place where they could snip off a sample while they are in there tomorrow, too high up. It could be nothing - lots of people have them. Scar from an old infection, or it could be more cancer. They'll assess what they can tomorrow and then I'll have to come back in a week or two when the rest of this is resolved and they'll do a CT guided biopsy of it to confirm. For that, they'll just poke a needle straight into it from my back. They just don't want to poke a new hole until everything else stabilizes.
I'm trying hard not to flip out about the possibilities there. I am less successful than I'd like to be.
Tuesday, October 22, 2013
hospital, day two
I feel a little better today, but not much. I got about 8 hours of sleep last night, interrupted a couple of times by nurses doing blood draws and giving me heparin shots (to make sure I don't develop a clot from just sitting in bed for so long).
They took me off the oxygen in my room since I seem to be staying steadily above 95% when I don't do anything. It's kind of fun to watch the monitor. It panics when I blow my nose. The incredible exertion of moving the hospital crap and my phone and laptop from one table to another while still sitting in bed (to make room for my breakfast tray) dropped me down to 89%.
We did a walking test this afternoon and the results were basically the same as yesterday - I dropped to 84% (instead of 82%). That's not much improvement. One thing did change this afternoon though - my cough was actually productive for the first time. I've spent most of my time with the bed raised so I'm sitting up and reading the interwebs or my kindle. I laid it flat this afternoon for a nap and that's when it changed - it got deeper and I started coughing up bubbles. Not mucous. Just foam and a little bit of tasteless liquid. The doctors were thrilled (it's a teaching hospital, there are five of them on my case). I've had a specimen cup waiting for sputum since they checked me in yesterday. I haven't heard back if they learned anything from it yet.
So they're still basically treating it like walking pneumonia (the antibiotics) with a side of taxol inflammation (prednisone). They're also testing for virus, it could be influenza presenting weirdly because of all the drugs I've been taking, and if that's the case they'll start me on tamiflu as well.
I'm planning to lay the bed back flat about an hour before I want to go to sleep and see if that doesn't help move some more of the crap out of there, if it is truly breaking up.
Across the board they are expecting to see a major improvement tomorrow morning because that will be the third dose of everything, and apparently that's the threshold for most people. If that happens they will be sending me home with an oxygen tank and monitor tomorrow night. If not, I'll be here at least another day.
I didn't get to see Bob today. He had a long day at school and then an important meeting he didn't want to miss around his football officials association. He offered to skip it, but I told him to go. I'm still mostly just in standby mode. In a random coincidence my sister is in town for a few days with her boyfriend. He's attending a conference, and she came along for the ride hoping to hang out with me for a bit, so she'll try to come down tomorrow via caltrain or catch a ride with Bob when he comes after class in the morning. I'm looking forward to that. Today was good to just be down and by myself. I'm sure I'll be a bit stir crazy tomorrow now that I've got some active brain cells again.
They took me off the oxygen in my room since I seem to be staying steadily above 95% when I don't do anything. It's kind of fun to watch the monitor. It panics when I blow my nose. The incredible exertion of moving the hospital crap and my phone and laptop from one table to another while still sitting in bed (to make room for my breakfast tray) dropped me down to 89%.
We did a walking test this afternoon and the results were basically the same as yesterday - I dropped to 84% (instead of 82%). That's not much improvement. One thing did change this afternoon though - my cough was actually productive for the first time. I've spent most of my time with the bed raised so I'm sitting up and reading the interwebs or my kindle. I laid it flat this afternoon for a nap and that's when it changed - it got deeper and I started coughing up bubbles. Not mucous. Just foam and a little bit of tasteless liquid. The doctors were thrilled (it's a teaching hospital, there are five of them on my case). I've had a specimen cup waiting for sputum since they checked me in yesterday. I haven't heard back if they learned anything from it yet.
So they're still basically treating it like walking pneumonia (the antibiotics) with a side of taxol inflammation (prednisone). They're also testing for virus, it could be influenza presenting weirdly because of all the drugs I've been taking, and if that's the case they'll start me on tamiflu as well.
I'm planning to lay the bed back flat about an hour before I want to go to sleep and see if that doesn't help move some more of the crap out of there, if it is truly breaking up.
Across the board they are expecting to see a major improvement tomorrow morning because that will be the third dose of everything, and apparently that's the threshold for most people. If that happens they will be sending me home with an oxygen tank and monitor tomorrow night. If not, I'll be here at least another day.
I didn't get to see Bob today. He had a long day at school and then an important meeting he didn't want to miss around his football officials association. He offered to skip it, but I told him to go. I'm still mostly just in standby mode. In a random coincidence my sister is in town for a few days with her boyfriend. He's attending a conference, and she came along for the ride hoping to hang out with me for a bit, so she'll try to come down tomorrow via caltrain or catch a ride with Bob when he comes after class in the morning. I'm looking forward to that. Today was good to just be down and by myself. I'm sure I'll be a bit stir crazy tomorrow now that I've got some active brain cells again.
This day took a hell of a turn.
I am in the hospital at Stanford with Ground-Glass Opacity of the Lung Parenchyma and some kind of secondary infection to go with it. Never heard of it? Me neither. http://en.wikipedia.org/wiki/Ground_glass_opacity Apparently it's a rare, late stage response to the Taxol I've been taking for the last 12 weeks, and it basically means that with any exertion at all - like walking 20 yards slowly around the doctors office, my blood oxygen drops below 80%, and also my pulse has been a steady 120 all day. Good times. Doc says they should have me fixed up with prednisone and antibiotics in about a week, but it's probably going to get worse before it gets better.
So, to rewind a bit....I've had this cough for about a month now. Non-productive, annoying. Slowly getting worse and worse. Pleurisy, they thought. And still could have been. I've been getting more and more fatigued, as expected, from the chemo. It's cumulative and they say I can expect to be feeling it for about three months after the end of treatment.
Friday morning I woke up and felt really weird. I got winded walking from the bed to the bathroom. I had to pause and catch my breath at least twice when I tried to climb stairs. There are a lot of stairs in our house. I take them slow, but never have to stop and pant like that.
We left for our road trip. I went into what I'm now calling "standby mode" almost immediately and stayed that way for the entire drive. Eyes closed, aware of my surroundings, not really asleep, not really awake. We checked into our hotel. I had to stop five times to catch my breath just walking down the long corridor to our room. We went to Jen and Bryan's for dinner and wedding cake tasting, and I was still exhausted - to the point that I crawled into their son's bed (he wasn't home) and slept for a couple of hours. We went back to the hotel and I slept until 11:30 and I had to get up and shower and check out. I slept in the car for an hour while we drove to the hotel to meet my family. I slept for another two hours before feeling OK enough to go to the family reunion. We were there for about three hours and then went to dinner with my parents and my sister. I was in bed by 8:30. We got up and had breakfast with them and then hit the road. Standby mode for all but about an hour of it. Went right to bed when I walked in the door. Standby mode until 7pm when I got up to try to eat something (I've also had zero appetite for days) and cancel the trip to Vegas I was supposed to take tomorrow. Back to bed at 9:30.
Up at 6 to drive down to Stanford to do that final mammogram/ultrasound/core biopsy. Bob came down to meet me so he'd be here when we talked to the oncologist. Bob was expecting her to prescribe an albuterol inhaler or something and call it a day.
I told her what had been going on over the weekend so she hooked me up to an oxygen monitor and had me do a lap around the exam rooms in the clinic. My blood oxygen dropped to 82% after I had covered about 20 yards. Also my heart rate has been about 120 all day, still is. And then she said "I think we're going to need to admit you to the hospital tonight."
Oh shit.
Her theory was that I either had a blood clot (that sprained ankle from a few weeks back could have been a cause), or inflammation, or infection in my lungs. She hooked me up to an oxygen tank, put my ass in a wheelchair, and then I had a CT scan. And then we did the core biopsy to close out the cancer study which was the whole point of today anyway. And then we sat around for a few hours while they tried to find a room for me. And then that room didn't have the right heart monitors so they switched rooms.
So now I'm in a really nice corner room - private bath, farthest from the nurses station. It's relatively quiet back here. I've got an oxygen monitor on my ring finger, a bunch of those contact pads and heart monitor stuck to my chest, and oxygen up my nose. Still coughing but it seems to have died back a little bit. The prednisone is trying to keep me up (and succeeding). I'm also having an epic hot flash from it. I'm waiting for an ativan to kick in so I can get some sleep.
None of the docs we talked to tonight were optimistic about me getting out of here tomorrow, and one guy said it could be a full week, depending on how fast I respond to the meds. If they don't see good response (more oxygen, lower pulse) in the next couple of days they'll go into my lungs and have a look around. I really really really hope I don't have to go through that.
In other news, I'll have those biopsy results on Thursday and we'll make the surgery/chemo decision then.
I know y'all think I'm crazy for doing as much as I've been doing, but I feel weirdly vindicated that this didn't happen as a result of me pushing myself "too hard", it's still just the taxol. And that makes me even more worried about the AC, which is supposed to be a lot harder on your body.
Either way, I'm starting the disability paperwork as soon as I have access to my work laptop and expect to take about 6 months off. I've got a few things I need to wrap up still, but I can do those piecemeal over the next couple of weeks, and then I'm done.
So, to rewind a bit....I've had this cough for about a month now. Non-productive, annoying. Slowly getting worse and worse. Pleurisy, they thought. And still could have been. I've been getting more and more fatigued, as expected, from the chemo. It's cumulative and they say I can expect to be feeling it for about three months after the end of treatment.
Friday morning I woke up and felt really weird. I got winded walking from the bed to the bathroom. I had to pause and catch my breath at least twice when I tried to climb stairs. There are a lot of stairs in our house. I take them slow, but never have to stop and pant like that.
We left for our road trip. I went into what I'm now calling "standby mode" almost immediately and stayed that way for the entire drive. Eyes closed, aware of my surroundings, not really asleep, not really awake. We checked into our hotel. I had to stop five times to catch my breath just walking down the long corridor to our room. We went to Jen and Bryan's for dinner and wedding cake tasting, and I was still exhausted - to the point that I crawled into their son's bed (he wasn't home) and slept for a couple of hours. We went back to the hotel and I slept until 11:30 and I had to get up and shower and check out. I slept in the car for an hour while we drove to the hotel to meet my family. I slept for another two hours before feeling OK enough to go to the family reunion. We were there for about three hours and then went to dinner with my parents and my sister. I was in bed by 8:30. We got up and had breakfast with them and then hit the road. Standby mode for all but about an hour of it. Went right to bed when I walked in the door. Standby mode until 7pm when I got up to try to eat something (I've also had zero appetite for days) and cancel the trip to Vegas I was supposed to take tomorrow. Back to bed at 9:30.
Up at 6 to drive down to Stanford to do that final mammogram/ultrasound/core biopsy. Bob came down to meet me so he'd be here when we talked to the oncologist. Bob was expecting her to prescribe an albuterol inhaler or something and call it a day.
I told her what had been going on over the weekend so she hooked me up to an oxygen monitor and had me do a lap around the exam rooms in the clinic. My blood oxygen dropped to 82% after I had covered about 20 yards. Also my heart rate has been about 120 all day, still is. And then she said "I think we're going to need to admit you to the hospital tonight."
Oh shit.
Her theory was that I either had a blood clot (that sprained ankle from a few weeks back could have been a cause), or inflammation, or infection in my lungs. She hooked me up to an oxygen tank, put my ass in a wheelchair, and then I had a CT scan. And then we did the core biopsy to close out the cancer study which was the whole point of today anyway. And then we sat around for a few hours while they tried to find a room for me. And then that room didn't have the right heart monitors so they switched rooms.
So now I'm in a really nice corner room - private bath, farthest from the nurses station. It's relatively quiet back here. I've got an oxygen monitor on my ring finger, a bunch of those contact pads and heart monitor stuck to my chest, and oxygen up my nose. Still coughing but it seems to have died back a little bit. The prednisone is trying to keep me up (and succeeding). I'm also having an epic hot flash from it. I'm waiting for an ativan to kick in so I can get some sleep.
None of the docs we talked to tonight were optimistic about me getting out of here tomorrow, and one guy said it could be a full week, depending on how fast I respond to the meds. If they don't see good response (more oxygen, lower pulse) in the next couple of days they'll go into my lungs and have a look around. I really really really hope I don't have to go through that.
In other news, I'll have those biopsy results on Thursday and we'll make the surgery/chemo decision then.
I know y'all think I'm crazy for doing as much as I've been doing, but I feel weirdly vindicated that this didn't happen as a result of me pushing myself "too hard", it's still just the taxol. And that makes me even more worried about the AC, which is supposed to be a lot harder on your body.
Either way, I'm starting the disability paperwork as soon as I have access to my work laptop and expect to take about 6 months off. I've got a few things I need to wrap up still, but I can do those piecemeal over the next couple of weeks, and then I'm done.
Wednesday, October 16, 2013
MRI day
It was pretty uneventful, as these things go.
Boy have my standards for that sentence changed in the last six months.
Due to the fact that I need to be stoned out of my gourd to get into that machine and not lose my mind, Bob drove me down to the appointment. Due to the fact that I am a doofus about scheduling things I had to go to school with him this morning so we could leave straight from there.
It actually worked out well, my disabled parking permit got us a spot in the faculty lot just outside the library, so I was able to do all my meetings and even a webex on the school wifi from the car, and nobody on the other end noticed.
We had to get to the imaging center an hour early so I could take my drugs (Zofran, because after the t-shirt experience at JavaOne I was worried about nausea from laying face down for so long, and valium) after signing the consent forms and then wait for them to kick in. They ran an IV into my hand for the contrast fluid (my port is in EXACTLY the wrong spot to use it for this exercise.)
Getting into the machine was tight, as I new it would be. Thanks to steroid bloat I'm actually about 5 pounds heavier than I was the last time we did this. On the happy side, there were a lot more diagnostics to do last time, so I was only in the thing for 30 minutes instead of close to an hour.
We discussed trying to do a fancier lunch or something for my birthday, but I was just too wrecked and wanted to get home to bed. We got burgers at Five Guys and came home. I slept until about 6 and am planning to go back to bed shortly.
They didn't share any results so I'm in the dark until Monday. Tomorrow I'm heading in to the office for meetings and then have a whole bunch of distractions lined up for the weekend.
Boy have my standards for that sentence changed in the last six months.
Due to the fact that I need to be stoned out of my gourd to get into that machine and not lose my mind, Bob drove me down to the appointment. Due to the fact that I am a doofus about scheduling things I had to go to school with him this morning so we could leave straight from there.
It actually worked out well, my disabled parking permit got us a spot in the faculty lot just outside the library, so I was able to do all my meetings and even a webex on the school wifi from the car, and nobody on the other end noticed.
We had to get to the imaging center an hour early so I could take my drugs (Zofran, because after the t-shirt experience at JavaOne I was worried about nausea from laying face down for so long, and valium) after signing the consent forms and then wait for them to kick in. They ran an IV into my hand for the contrast fluid (my port is in EXACTLY the wrong spot to use it for this exercise.)
Getting into the machine was tight, as I new it would be. Thanks to steroid bloat I'm actually about 5 pounds heavier than I was the last time we did this. On the happy side, there were a lot more diagnostics to do last time, so I was only in the thing for 30 minutes instead of close to an hour.
We discussed trying to do a fancier lunch or something for my birthday, but I was just too wrecked and wanted to get home to bed. We got burgers at Five Guys and came home. I slept until about 6 and am planning to go back to bed shortly.
They didn't share any results so I'm in the dark until Monday. Tomorrow I'm heading in to the office for meetings and then have a whole bunch of distractions lined up for the weekend.
Tuesday, October 15, 2013
And, done. With the first part.
I left the house at 6:45 this morning for my 8am appointment for bloodwork and didn't get there until 8:45. Traffic was unbelievable. As is the new normal, my port took the flushes just fine, but no blood return, so they set up an IV in my left arm and used that all day for my bloodwork, but still pushed the infusion into the port. Otherwise everything went as expected. Long boring day. Nice nurses. Actually, one unexpected thing.
They have a standard routine, even if they know the patient, where any interaction between the patient and nurse that involves medication, bloodwork, or vitals starts with them asking me to confirm my name and birth date, and then they compare that to whatever paperwork or labels they have in hand and the bracelet they place on my wrist at checkin.
It's a good routine, once I almost accidentally got Theresa somebody's chemo instead of mine, and we caught it because of that system. At some point they noticed this morning that my birthday is tomorrow, and I woke up from my nap to the entire nursing staff singing happy birthday and they presented me with a red velvet cupcake with a hand drawn "candle" (no flames in the infusion rooms). That was very sweet of them.
I feel like I've been hit by a truck. Typically I start my infusions around 4pm for the last few months. This time we started at 10am, so my head is in a totally different space now than it has been in previous weeks. And I am right now at the highest toxicity I'll ever have with taxol. Low level miseries include that stupid pleuritic cough, small but constant nosebleeds from cracked sinuses, low level sore throat, my mouth is dry and tastes like dirty pennies, and the bottom of my left foot is almost entirely numb now. The neuropathy is starting up in my hands too. No numbness yet, but I am a lot clutzier than usual - putting things down wrong on tables or knocking things over that I intend to pick up. They think it'll take a couple of months to get back to normal. At least it shouldn't get any worse than it is right now.
Interestingly, my hair never completely fell out. I still have (significantly smaller) eyebrows and lashes, and about a half inch of white fuzz scattered sparsely across my scalp. It's well over 99% gone. I would look like the Crypt Keeper if I had tried to keep the length while it fell out. Maybe that's preferable to Drew Carey? Nah.
I can't see it, but I think it's thicker at the nape of my neck. People like to pet the fuzz. I'm thinking that I might have it shaved clean next week. I can do that now because I'll be on a break from chemo at that point and it won't be dangerous if I get a small cut, and it will make wearing hats/scarves/buffs easier and less itchy as it gets colder.
MRI is scheduled for tomorrow morning. With the doc's permission I'm delaying taking the next steroid dose until after it's done, so hopefully I can take a bunch of valium and sleep through the claustrophobia. Bob's driving me, which means I have to get up and go to school with him, and hang out in the library so we can leave as soon as his last class is over.
They have a standard routine, even if they know the patient, where any interaction between the patient and nurse that involves medication, bloodwork, or vitals starts with them asking me to confirm my name and birth date, and then they compare that to whatever paperwork or labels they have in hand and the bracelet they place on my wrist at checkin.
It's a good routine, once I almost accidentally got Theresa somebody's chemo instead of mine, and we caught it because of that system. At some point they noticed this morning that my birthday is tomorrow, and I woke up from my nap to the entire nursing staff singing happy birthday and they presented me with a red velvet cupcake with a hand drawn "candle" (no flames in the infusion rooms). That was very sweet of them.
I feel like I've been hit by a truck. Typically I start my infusions around 4pm for the last few months. This time we started at 10am, so my head is in a totally different space now than it has been in previous weeks. And I am right now at the highest toxicity I'll ever have with taxol. Low level miseries include that stupid pleuritic cough, small but constant nosebleeds from cracked sinuses, low level sore throat, my mouth is dry and tastes like dirty pennies, and the bottom of my left foot is almost entirely numb now. The neuropathy is starting up in my hands too. No numbness yet, but I am a lot clutzier than usual - putting things down wrong on tables or knocking things over that I intend to pick up. They think it'll take a couple of months to get back to normal. At least it shouldn't get any worse than it is right now.
Interestingly, my hair never completely fell out. I still have (significantly smaller) eyebrows and lashes, and about a half inch of white fuzz scattered sparsely across my scalp. It's well over 99% gone. I would look like the Crypt Keeper if I had tried to keep the length while it fell out. Maybe that's preferable to Drew Carey? Nah.
I can't see it, but I think it's thicker at the nape of my neck. People like to pet the fuzz. I'm thinking that I might have it shaved clean next week. I can do that now because I'll be on a break from chemo at that point and it won't be dangerous if I get a small cut, and it will make wearing hats/scarves/buffs easier and less itchy as it gets colder.
MRI is scheduled for tomorrow morning. With the doc's permission I'm delaying taking the next steroid dose until after it's done, so hopefully I can take a bunch of valium and sleep through the claustrophobia. Bob's driving me, which means I have to get up and go to school with him, and hang out in the library so we can leave as soon as his last class is over.
Monday, October 14, 2013
Vacation! Banks! The end of the trial is here!
Where were we? Thursday I took off for the weekend and drove up to Murphys (small town about halfway between San Francisco and Yosemite) to share a vacation house with some friends for the weekend. I basically did nothing - eat, nap, read, hang out and chat with friends. Very low key, and very much what I needed to do.
I came home yesterday afternoon and basically dove straight into paperwork. I'm trying (and kind of succeeding) to winnow down the big piles of bills that we've been ignoring, and also got started on the paperwork for the short sale on my old condo.
This morning was more of the same, punctuated by work meetings, getting caught up on email, and my first consultation with a plastic surgeon. Bob had class this morning, so Cait came with me.
The doc walked me through the options. There are basically four kinds of surgery (and a bunch of smaller variations within them).
The first one, which is the least appealing to me, is the expanders/implants version. They cut everything off, put a balloon behind the chest wall and over the course of a few weeks add fluid via a port until the balloon has expanded to the size you want. Then you have surgery and have the expander replaced with an implant. It's pretty straight forward, but it also pulls a lot of muscles out of place. Also, implants need to be replaced about every 10 years. Also, implants are cold, which was a surprise when I first heard it, but it makes sense. If you've got these bags of saline kind of hanging out in the breeze, they are not going to be the same temperature as the rest of your body.
Then there are several variations of "flap" surgeries. These are the ones where you're doing more (or all) of the rebuilding out of body tissue, and the big concern is that whatever you move has to have the right kind of blood supply, or the tissue will die.
The first kind is pretty standard for women who are reconstructing one breast - they take tissue from the abdomen along with one of the ab muscles and shift the whole thing up - the muscle provides the blood supply and some structure. Works great for women with one breast to reconstruct, but not for two. Abs are kind of important for sitting up and stuff. So that's out.
The next kind is a bit of a hybrid - they pull your latissimus dorsi muscle and skin (the one that makes ridiculous bodybuilders look like they have wings?) around to the front, and then seal in an implant under it. Smaller women can do this without implants, but a person of my size would look really out of proportion without some extra bulk under it. Advantages - no expanders, the surgery is one and done. But you still need to replace implants every decade or so, and it's not good for people who like to golf (not me) or swim (sometimes me) because that muscle is pretty important for activities like that. But, for day to day living there are a bunch of other muscles that can be built up with weight training and it wouldn't limit most of the activities I enjoy, although it would change my pilates routine significantly. Here's some links on it (NSFWish - medical boobs)
http://emedicine.medscape.com/article/1274087-overview and http://www.mayoclinic.com/health/medical/IM00280
The last one is called a DIEP flap. In this one they pull skin and fat from the abdomen, and pull some of the blood supply from the abdominal muscles without actually cutting them. This is the most intense of the surgeries, if we do it I'll be on the table for about 15 hours, and I will essentially be getting a tummy tuck in the bargain. Some links on this one - http://en.wikipedia.org/wiki/DIEP_flap
and https://www.youtube.com/watch?v=tYEt1Pw6FNU
This is the one I want. It disturbs my musculature the least, requires no implants or expanders, and can be done in one surgery, although it's likely with ANY of these that I'll want to do minor tweaks over time. I'm a good candidate because I've got quite a bit of extra tissue for them to harvest. I'm not a perfect candidate because of my scars from the lap band surgeries - those scars mean that some areas might not have enough bloodflow to survive the graft. But, those scars are pretty small - I've got one 1.5 inch incision that's pretty obvious right at my waistline, and three very very faint ones scattered across my abdomen.
So the doc took a bunch of pictures of me and is going to consult with his partner who he does all of these surgeries with and decide if they think I'm a good candidate for the DIEP. If I am, we'll go for it. If not, I'll do the Lat flap. If I do the DIEP flap and it fails for some reason, the Lat flap is still a viable option.
No matter what happens, I'm not going to be the size I am now - the result will be a reduction in size, but I'm very much OK with that, and what's left will be a heckuva lot perkier than what I have now. I am concerned with overall body shape, but we can tweak my bottom half a bit with lipo (and there's a sentence I never imagined typing) and keep my overall shape the same. This isn't going to make me thin, by any stretch of the imagination. I'll still be quite heavy, but I'd like to be heavy and in proportion.
So now I wait for the doc to consult with his buddy and decide if I'm a good candidate for DIEP. While I'm waiting, tomorrow will be the last day on the taxol/LCL trial for me. I have to be at Stanford at 8am for bloodwork, and I expect to be there until the late afternoon doing the wrap up bloodwork. MRI on Wednesday.
I came home yesterday afternoon and basically dove straight into paperwork. I'm trying (and kind of succeeding) to winnow down the big piles of bills that we've been ignoring, and also got started on the paperwork for the short sale on my old condo.
This morning was more of the same, punctuated by work meetings, getting caught up on email, and my first consultation with a plastic surgeon. Bob had class this morning, so Cait came with me.
The doc walked me through the options. There are basically four kinds of surgery (and a bunch of smaller variations within them).
The first one, which is the least appealing to me, is the expanders/implants version. They cut everything off, put a balloon behind the chest wall and over the course of a few weeks add fluid via a port until the balloon has expanded to the size you want. Then you have surgery and have the expander replaced with an implant. It's pretty straight forward, but it also pulls a lot of muscles out of place. Also, implants need to be replaced about every 10 years. Also, implants are cold, which was a surprise when I first heard it, but it makes sense. If you've got these bags of saline kind of hanging out in the breeze, they are not going to be the same temperature as the rest of your body.
Then there are several variations of "flap" surgeries. These are the ones where you're doing more (or all) of the rebuilding out of body tissue, and the big concern is that whatever you move has to have the right kind of blood supply, or the tissue will die.
The first kind is pretty standard for women who are reconstructing one breast - they take tissue from the abdomen along with one of the ab muscles and shift the whole thing up - the muscle provides the blood supply and some structure. Works great for women with one breast to reconstruct, but not for two. Abs are kind of important for sitting up and stuff. So that's out.
The next kind is a bit of a hybrid - they pull your latissimus dorsi muscle and skin (the one that makes ridiculous bodybuilders look like they have wings?) around to the front, and then seal in an implant under it. Smaller women can do this without implants, but a person of my size would look really out of proportion without some extra bulk under it. Advantages - no expanders, the surgery is one and done. But you still need to replace implants every decade or so, and it's not good for people who like to golf (not me) or swim (sometimes me) because that muscle is pretty important for activities like that. But, for day to day living there are a bunch of other muscles that can be built up with weight training and it wouldn't limit most of the activities I enjoy, although it would change my pilates routine significantly. Here's some links on it (NSFWish - medical boobs)
http://emedicine.medscape.com/article/1274087-overview and http://www.mayoclinic.com/health/medical/IM00280
The last one is called a DIEP flap. In this one they pull skin and fat from the abdomen, and pull some of the blood supply from the abdominal muscles without actually cutting them. This is the most intense of the surgeries, if we do it I'll be on the table for about 15 hours, and I will essentially be getting a tummy tuck in the bargain. Some links on this one - http://en.wikipedia.org/wiki/DIEP_flap
and https://www.youtube.com/watch?v=tYEt1Pw6FNU
This is the one I want. It disturbs my musculature the least, requires no implants or expanders, and can be done in one surgery, although it's likely with ANY of these that I'll want to do minor tweaks over time. I'm a good candidate because I've got quite a bit of extra tissue for them to harvest. I'm not a perfect candidate because of my scars from the lap band surgeries - those scars mean that some areas might not have enough bloodflow to survive the graft. But, those scars are pretty small - I've got one 1.5 inch incision that's pretty obvious right at my waistline, and three very very faint ones scattered across my abdomen.
So the doc took a bunch of pictures of me and is going to consult with his partner who he does all of these surgeries with and decide if they think I'm a good candidate for the DIEP. If I am, we'll go for it. If not, I'll do the Lat flap. If I do the DIEP flap and it fails for some reason, the Lat flap is still a viable option.
No matter what happens, I'm not going to be the size I am now - the result will be a reduction in size, but I'm very much OK with that, and what's left will be a heckuva lot perkier than what I have now. I am concerned with overall body shape, but we can tweak my bottom half a bit with lipo (and there's a sentence I never imagined typing) and keep my overall shape the same. This isn't going to make me thin, by any stretch of the imagination. I'll still be quite heavy, but I'd like to be heavy and in proportion.
So now I wait for the doc to consult with his buddy and decide if I'm a good candidate for DIEP. While I'm waiting, tomorrow will be the last day on the taxol/LCL trial for me. I have to be at Stanford at 8am for bloodwork, and I expect to be there until the late afternoon doing the wrap up bloodwork. MRI on Wednesday.
Wednesday, October 9, 2013
Week 11
Once again my port was misbehaving. They don't think it's clotting up, they think there's a kink in the line. It takes a push just fine, but blood return is so slow that they can't fill the vials for my bloodwork fast enough. We did three full draws over three hours before we finally got samples (from the back of my hand instead of the port) that prove that I'm not dead yet. So we started way late, and I got out of there way later. No meltdown from me this time. I guess I'm getting better at this.
I was weirdly sad to leave. The first and last days of the trial happen in a different building, so while this was my 11th infusion, it was my 10th and last at this facility. They really go over the top to make you feel welcome - the front desk staff makes a point of knowing the schedule before you get there, and always greeting you by name if they can confidently do it when they call you from the line (if there's a line at all). They only messed up once on me, when I showed up an hour early for something. And the next week the woman who did it happened to be in the parking lot before my appointment and called my name to let me know she remembered. It's a lot of little stuff, but it counts.
Today I made all the phone calls. Got my MRI booked for next Wednesday. Got two different plastic surgery consults booked and the gyno surgeon. Also did a bunch of bank stuff, because what you really need on top of cancer and a slightly sprained ankle and a full time job is bullshit like this.
Wells Fargo is attempting to foreclose on the house we just bought even though we've paid every bill on time since we moved in. They just helpfully decided to apply one of our mortgage payments to principal and set off a spiral of "late fees" and "missed payments" that were never applied to the account because they don't "accept partial payments". I think it's all straightened out now. If I were healthier (and/or this continues unresolved for another couple of weeks) I would start a social media shitstorm about it (social marketing is basically what I do for a living now, I'm pretty good at it), but I just can't apply any more energy to it right now. And they've got another 29 theoretical years to try to screw us over again. I'll be keeping a closer eye out.
The condo I've been waiting for someone to foreclose on for the past 16 months as it's been sitting and unpaid for finally had some movement. Collections called me. I started the process to do a deed in lieu, but also called our real estate agent (who I've worked with multiple times now and love dearly) to ask for advice. She said she thinks she can get a short sale done for me, with no more effort on my part than filling out a couple of forms and she'll do the rest of the legwork. So I agreed to it. It's better for my credit rating, which would allow us to refi away from Wells Fargo (and our PMI) on this place sooner. It's a really nice studio, right on the beach and a giant park with gorgeous walking/bike paths. I loved that place for a long long time, it just wasn't big enough for me and Bob to both live and work from home. BofA refused a short sale the first time I asked because I "make too much money" and had no other hardships. Well now I have a bigger mortgage and cancer, so I've got no trouble with the hardship qualification. We'll see how it goes.
The oncologist confirmed the neuropathy in my feet. Apparently I've done everything really really right with my supplements and meds and eating strategy - like the anemia and pleurisy, they expected to see those symptoms in week 6, which is when everybody else gets them. She thinks I staved it off enough with the glutamine supplements that I should get the feeling back in my feet within about a month of finishing treatment. But then it's also a side effect of the AC chemo, so I might get it back just in time to start over again.
Tomorrow I get up early to run one meeting at 7am, then I'll spend an hour on that paperwork for the short sale, and then I'm off on vacation. I'm excited, but a little worried that with all this free time I'll have time to think. About stuff. I'm bringing the laptop that doesn't have the security crap for work on it so that temptation won't be there, and a Kindle stocked with a lot of trashy novels, and comfy pants for days. Everybody else is going spelunking. Hahahahahahaha.
I was weirdly sad to leave. The first and last days of the trial happen in a different building, so while this was my 11th infusion, it was my 10th and last at this facility. They really go over the top to make you feel welcome - the front desk staff makes a point of knowing the schedule before you get there, and always greeting you by name if they can confidently do it when they call you from the line (if there's a line at all). They only messed up once on me, when I showed up an hour early for something. And the next week the woman who did it happened to be in the parking lot before my appointment and called my name to let me know she remembered. It's a lot of little stuff, but it counts.
Today I made all the phone calls. Got my MRI booked for next Wednesday. Got two different plastic surgery consults booked and the gyno surgeon. Also did a bunch of bank stuff, because what you really need on top of cancer and a slightly sprained ankle and a full time job is bullshit like this.
Wells Fargo is attempting to foreclose on the house we just bought even though we've paid every bill on time since we moved in. They just helpfully decided to apply one of our mortgage payments to principal and set off a spiral of "late fees" and "missed payments" that were never applied to the account because they don't "accept partial payments". I think it's all straightened out now. If I were healthier (and/or this continues unresolved for another couple of weeks) I would start a social media shitstorm about it (social marketing is basically what I do for a living now, I'm pretty good at it), but I just can't apply any more energy to it right now. And they've got another 29 theoretical years to try to screw us over again. I'll be keeping a closer eye out.
The condo I've been waiting for someone to foreclose on for the past 16 months as it's been sitting and unpaid for finally had some movement. Collections called me. I started the process to do a deed in lieu, but also called our real estate agent (who I've worked with multiple times now and love dearly) to ask for advice. She said she thinks she can get a short sale done for me, with no more effort on my part than filling out a couple of forms and she'll do the rest of the legwork. So I agreed to it. It's better for my credit rating, which would allow us to refi away from Wells Fargo (and our PMI) on this place sooner. It's a really nice studio, right on the beach and a giant park with gorgeous walking/bike paths. I loved that place for a long long time, it just wasn't big enough for me and Bob to both live and work from home. BofA refused a short sale the first time I asked because I "make too much money" and had no other hardships. Well now I have a bigger mortgage and cancer, so I've got no trouble with the hardship qualification. We'll see how it goes.
The oncologist confirmed the neuropathy in my feet. Apparently I've done everything really really right with my supplements and meds and eating strategy - like the anemia and pleurisy, they expected to see those symptoms in week 6, which is when everybody else gets them. She thinks I staved it off enough with the glutamine supplements that I should get the feeling back in my feet within about a month of finishing treatment. But then it's also a side effect of the AC chemo, so I might get it back just in time to start over again.
Tomorrow I get up early to run one meeting at 7am, then I'll spend an hour on that paperwork for the short sale, and then I'm off on vacation. I'm excited, but a little worried that with all this free time I'll have time to think. About stuff. I'm bringing the laptop that doesn't have the security crap for work on it so that temptation won't be there, and a Kindle stocked with a lot of trashy novels, and comfy pants for days. Everybody else is going spelunking. Hahahahahahaha.
Saturday, October 5, 2013
initial surgery consult, more fun trial side effects
Cait and Bob came with me to meet with Dr. C yesterday. She did do an ultrasound and it showed that the tumor is about half the size it was the last time she saw me, and it has flattened out into an entirely different shape now, and she agrees with Dr. T that it's entirely possible that what is left is mostly non-malignant tissue. So she's on board with what she dubbed the "sandwich" plan (surgery between two courses of chemo) if the tests go my way in the next couple of weeks.
She gave me referrals to two different plastic surgeons that I'll get separate consults from, and then I'll pick one or move on to others if I don't like either. She also referred me to a gyno-onco surgeon (there's a better term for that, I'm sure) surgeon to do the oopherectomy. Can't remember if I've explained that bit, so here goes. The BRCA mutation pretty much guarantees I'll get ovarian cancer if I don't have them removed in the next couple of years, regardless of the success of my treatment now. "Ovarian cancer" in this case also includes major risk in the fallopian tube tissue as well, so all of that has to come out. And it basically means taking a cone section out of the uterus around the fallopian tubes since that tissue tunnels all the way through to the inside of the uterus. So I need a specialist there because it's just a much greater level of detail in the surgery than it would be if I was having my ovaries removed for some other reason, or my tubes tied, for example.
So next week I go see the ortho about my ankle (which I think is fine) and make appointments with these three surgeons and get more details on what the options are for reconstruction.
My ankle hasn't gotten any more painful, although it is really colorful at the moment. I'm keeping it under compression and the extra swelling is gone now. But I am feeling numbness down the outside of my foot. But I'm also feeling numbness down the outside of my other foot, which makes me think this is neuropathy from taxol, not necessarily damage from the fall. No pain, it just feels a little off, like my pinky toes are going to sleep. But I can move them fine and walk fine and my circulation is clearly OK.
The other thing that happened this week is that I finally went anemic. It took me a lot longer than they expected it to - apparently most people get there around week 6 or 7 on taxol, I made it all the way to 10. Which I take to mean that my pate plan was successful. And I'm continuing to eat it regularly (really this is food as medicine at this point, I cannot imagine ever eating it again) to keep my iron levels as high as I can. But it's just one of the functions of chemo - you burn through it faster than your body could possibly absorb it, so I was always going to get here. If it gets bad enough I would need to have a transfusion, but I'm just barely over the line now and will try to maintain the habit for the next couple of weeks. I can feel it though. Weaker by the day. I still try to take Dexter out for his morning walk and I can't describe the feeling of climbing the stairs any better than just being completely out of gas.
And another thing that is happening is that I've developed a "pleuritic cough" - this is another one of those side effects of the LCL that everybody gets eventually, apparently. It sounds so dainty and victorian, right? Dry cough. It started while I was at the conference last week and I assumed I was just wearing myself out talking. Nope. It's intermittent and annoying, but I can still reliably take a deep breath without coughing 99.9% of the time, so we're not doing anything about it for now. If it gets worse, I get......more steroids!
And finally. Totally TMI again. You've been warned. The Lomotil has been the miracle maintenance drug as far as I'm concerned. I can deal with puking (about once a week recently), but complete bowel incontinence is abject misery and disgusting. This solved that problem and I think is really the thing that has kept me sane and able to keep living my life over the last couple of months. But. Those two pills stop everything dead in my gut for a couple of days. And the steroids make me hungry. So by Thursday night I'm still hungry but very full of...shit. It's kind of disturbing. I tried taking a stool softener a couple weeks ago, and it just gave me the runs again which defeats the purpose of the Lomotil in the first place. On Friday when it all breaks loose, at least it does so in an orderly fashion. No pain. No diarrhea. It's just. A lot. And I'll leave it there.
Two weeks to go, and then everything changes again.
She gave me referrals to two different plastic surgeons that I'll get separate consults from, and then I'll pick one or move on to others if I don't like either. She also referred me to a gyno-onco surgeon (there's a better term for that, I'm sure) surgeon to do the oopherectomy. Can't remember if I've explained that bit, so here goes. The BRCA mutation pretty much guarantees I'll get ovarian cancer if I don't have them removed in the next couple of years, regardless of the success of my treatment now. "Ovarian cancer" in this case also includes major risk in the fallopian tube tissue as well, so all of that has to come out. And it basically means taking a cone section out of the uterus around the fallopian tubes since that tissue tunnels all the way through to the inside of the uterus. So I need a specialist there because it's just a much greater level of detail in the surgery than it would be if I was having my ovaries removed for some other reason, or my tubes tied, for example.
So next week I go see the ortho about my ankle (which I think is fine) and make appointments with these three surgeons and get more details on what the options are for reconstruction.
My ankle hasn't gotten any more painful, although it is really colorful at the moment. I'm keeping it under compression and the extra swelling is gone now. But I am feeling numbness down the outside of my foot. But I'm also feeling numbness down the outside of my other foot, which makes me think this is neuropathy from taxol, not necessarily damage from the fall. No pain, it just feels a little off, like my pinky toes are going to sleep. But I can move them fine and walk fine and my circulation is clearly OK.
The other thing that happened this week is that I finally went anemic. It took me a lot longer than they expected it to - apparently most people get there around week 6 or 7 on taxol, I made it all the way to 10. Which I take to mean that my pate plan was successful. And I'm continuing to eat it regularly (really this is food as medicine at this point, I cannot imagine ever eating it again) to keep my iron levels as high as I can. But it's just one of the functions of chemo - you burn through it faster than your body could possibly absorb it, so I was always going to get here. If it gets bad enough I would need to have a transfusion, but I'm just barely over the line now and will try to maintain the habit for the next couple of weeks. I can feel it though. Weaker by the day. I still try to take Dexter out for his morning walk and I can't describe the feeling of climbing the stairs any better than just being completely out of gas.
And another thing that is happening is that I've developed a "pleuritic cough" - this is another one of those side effects of the LCL that everybody gets eventually, apparently. It sounds so dainty and victorian, right? Dry cough. It started while I was at the conference last week and I assumed I was just wearing myself out talking. Nope. It's intermittent and annoying, but I can still reliably take a deep breath without coughing 99.9% of the time, so we're not doing anything about it for now. If it gets worse, I get......more steroids!
And finally. Totally TMI again. You've been warned. The Lomotil has been the miracle maintenance drug as far as I'm concerned. I can deal with puking (about once a week recently), but complete bowel incontinence is abject misery and disgusting. This solved that problem and I think is really the thing that has kept me sane and able to keep living my life over the last couple of months. But. Those two pills stop everything dead in my gut for a couple of days. And the steroids make me hungry. So by Thursday night I'm still hungry but very full of...shit. It's kind of disturbing. I tried taking a stool softener a couple weeks ago, and it just gave me the runs again which defeats the purpose of the Lomotil in the first place. On Friday when it all breaks loose, at least it does so in an orderly fashion. No pain. No diarrhea. It's just. A lot. And I'll leave it there.
Two weeks to go, and then everything changes again.
Wednesday, October 2, 2013
Week 10, and feeling a bit like the girl who cried wolf.
It's been a while. Let's rewind to Saturday. Short version - I tripped on a really crappy broken-up bit of sidewalk and fell down. Twisted my left ankle, scraped my right knee, scuffed up my palms a bit. I'm pretty sure that three months ago my balance was good enough that I wouldn't have gone down, and my attention was good enough that I would have avoided the bad piece of sidewalk while dodging the homeless guy in the first place. Evidence: I've been walking that stretch of sidewalk and dodging that homeless guy every Saturday morning for at least five years and never tripped on it. But maybe not. That is stuff I was working on in PT, and I hadn't been marinating my brain in poison for 9 weeks.
Either way, it happened. I went to breakfast and the waitress brought me ice for it. I went to Trader Joe's and got our groceries and hauled them all upstairs (Bob was at football) and put more ice on it. My feet are already hugely swollen from chemo (water retention is standard, good times) but it didn't hurt that bad. I've got TONS of pain meds floating around here, and I didn't feel the need to do anything more than wrap it, take Aleve and ice it, and it really didn't hurt that bad or feel unstable. Bob saw it and flipped out when he got home Saturday night. So we got up early and went to the ER for an xray.
Here's where we get to the cried-wolf part. The doc said that the radiologists thought it might be a fracture but couldn't agree, and that a specialist would look and call me back on Monday morning. Then a nurse put me in a really shitty fiberglass splint that was too tight and too tall and cut into the back of my knee. Within thirty minutes I went from no pain to 5 or 6 on a scale to 10.
I left it on to keep Bob happy even though it was hurting. That night I took a percocet before bed and couldn't sleep because it hurt so bad. For reference, in June when I had my port surgery in my chest, one percocet knocked me out in 20 minutes flat and kept me out for five or six hours. I haven't taken any opiates since then, so my tolerance should be the same. Five hours, three percocets, and no sleep later, I ripped the splint off. INSTANT relief. I rewrapped it like you would a sprain and was asleep within five minutes.
No specialist called yesterday, and thanks to HIPAA they won't give me any information over the phone. The soonest the ortho can see me is next Monday. So I called Fisher and asked if she could track it down for me. She did, and the reason why nobody could tell me which bone might be broken is that the doctor who told me "fracture" wrote sprain, with possible fracture TBD on the report. So basically he lied to me to cover his ass.
So now I'm treating it like I would a mediumish sprain - ice, wrap, Aleve, trying to stay off it around the house, crutches when I leave the house until I see the ortho on Monday.
Today I went down to Stanford for the beginning of round 4, infusion 10. This was one of the longer days - bloodwork, see the NP, see the oncologist, infusion. We planned out the rest of my treatment on the trial. Here's what my medical stuff looks like (including the ankle):
Fri Oct 4 - Surgical consult with Dr C. She will be doing a bilateral mastectomy, and refer me to a surgeon who specializes in gynecological oncology and a couple of plastic surgeons. We will get me on the calendar with that team for mid-November to do a bilateral mastectomy, oopherectomy (ovaries and fallopian tubes), and a "flap" surgery (essentially a tummy tuck where they yoink everything in my abdomen up to where my breasts are now) all in one go. Note that this is *not* reconstruction, there will be a separate surgery (and probably more than one to tweak it) later.
Mon Oct 7 - Ortho to look at the ankle.
Tue Oct 8 - bloodwork and infusion number 11 in the afternoon
Tue Oct 15 - last day of trial, which will be a repeat of my first day - in the office from 9-6ish for bloodwork, chemo, last dose of LCL, and then bloodwork throughout the afternoon to see how fast my body is moving the LCL out of my system.
Wed or Thu Oct 16/17 - full round of imaging - MRI, mammogram, ultrasound.
Mon Oct 21 - final meeting with Dr. T to close out the study. She will read the MRI and determine if any part of the tumor remains.
If it does, we will do a final core biopsy that afternoon to close the study out, cancel the November surgeries and move them to early February, and start my first dose of AC chemo (another 12 weeks) as early as Friday 10/25.
If there is no tumor, we go with the November surgery, AC as soon as I've recovered enough to tolerate it, and then reconstruction.
This is a plan. I can work with a plan. I'm probably going to be flipping out the weekend before Oct 21, but I have a ton of fun plans (family reunion and hanging out with some old friends for a very low key birthday party) and expect to be too busy or too tired to think about it. Which is probably a good thing. I'll take the big bottle of Ativan along just in case.
They predicted that week 10 was the week I'd really be feeling it. They were right. Last week was the first time I felt dopey through the infusion despite the steroids. This week I actually fell asleep for 90 minutes of it. On the plus side, blood return worked great this week. And I realized it was probably helped along by all the Aleve I've been taking for my ankle. DUH. My blood actually looked thinner going into the test tubes. DUH.
Either way, it happened. I went to breakfast and the waitress brought me ice for it. I went to Trader Joe's and got our groceries and hauled them all upstairs (Bob was at football) and put more ice on it. My feet are already hugely swollen from chemo (water retention is standard, good times) but it didn't hurt that bad. I've got TONS of pain meds floating around here, and I didn't feel the need to do anything more than wrap it, take Aleve and ice it, and it really didn't hurt that bad or feel unstable. Bob saw it and flipped out when he got home Saturday night. So we got up early and went to the ER for an xray.
Here's where we get to the cried-wolf part. The doc said that the radiologists thought it might be a fracture but couldn't agree, and that a specialist would look and call me back on Monday morning. Then a nurse put me in a really shitty fiberglass splint that was too tight and too tall and cut into the back of my knee. Within thirty minutes I went from no pain to 5 or 6 on a scale to 10.
I left it on to keep Bob happy even though it was hurting. That night I took a percocet before bed and couldn't sleep because it hurt so bad. For reference, in June when I had my port surgery in my chest, one percocet knocked me out in 20 minutes flat and kept me out for five or six hours. I haven't taken any opiates since then, so my tolerance should be the same. Five hours, three percocets, and no sleep later, I ripped the splint off. INSTANT relief. I rewrapped it like you would a sprain and was asleep within five minutes.
No specialist called yesterday, and thanks to HIPAA they won't give me any information over the phone. The soonest the ortho can see me is next Monday. So I called Fisher and asked if she could track it down for me. She did, and the reason why nobody could tell me which bone might be broken is that the doctor who told me "fracture" wrote sprain, with possible fracture TBD on the report. So basically he lied to me to cover his ass.
So now I'm treating it like I would a mediumish sprain - ice, wrap, Aleve, trying to stay off it around the house, crutches when I leave the house until I see the ortho on Monday.
Today I went down to Stanford for the beginning of round 4, infusion 10. This was one of the longer days - bloodwork, see the NP, see the oncologist, infusion. We planned out the rest of my treatment on the trial. Here's what my medical stuff looks like (including the ankle):
Fri Oct 4 - Surgical consult with Dr C. She will be doing a bilateral mastectomy, and refer me to a surgeon who specializes in gynecological oncology and a couple of plastic surgeons. We will get me on the calendar with that team for mid-November to do a bilateral mastectomy, oopherectomy (ovaries and fallopian tubes), and a "flap" surgery (essentially a tummy tuck where they yoink everything in my abdomen up to where my breasts are now) all in one go. Note that this is *not* reconstruction, there will be a separate surgery (and probably more than one to tweak it) later.
Mon Oct 7 - Ortho to look at the ankle.
Tue Oct 8 - bloodwork and infusion number 11 in the afternoon
Tue Oct 15 - last day of trial, which will be a repeat of my first day - in the office from 9-6ish for bloodwork, chemo, last dose of LCL, and then bloodwork throughout the afternoon to see how fast my body is moving the LCL out of my system.
Wed or Thu Oct 16/17 - full round of imaging - MRI, mammogram, ultrasound.
Mon Oct 21 - final meeting with Dr. T to close out the study. She will read the MRI and determine if any part of the tumor remains.
If it does, we will do a final core biopsy that afternoon to close the study out, cancel the November surgeries and move them to early February, and start my first dose of AC chemo (another 12 weeks) as early as Friday 10/25.
If there is no tumor, we go with the November surgery, AC as soon as I've recovered enough to tolerate it, and then reconstruction.
This is a plan. I can work with a plan. I'm probably going to be flipping out the weekend before Oct 21, but I have a ton of fun plans (family reunion and hanging out with some old friends for a very low key birthday party) and expect to be too busy or too tired to think about it. Which is probably a good thing. I'll take the big bottle of Ativan along just in case.
They predicted that week 10 was the week I'd really be feeling it. They were right. Last week was the first time I felt dopey through the infusion despite the steroids. This week I actually fell asleep for 90 minutes of it. On the plus side, blood return worked great this week. And I realized it was probably helped along by all the Aleve I've been taking for my ankle. DUH. My blood actually looked thinner going into the test tubes. DUH.
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