Something goes right...

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.

So I guess that's it - tomorrow is my last day until next May . WEIRD.

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Breathing is still improving but has a way to go.  I turned off the oxygen concentrator yesterday because I haven't needed it.  I can climb a flight of stairs without the emergency air, but I'm still a bit out of breath at the top and need to sit for a minute.  That's a lot better than getting dizzy and nearly passing out every third step.  

 I've got two days left on the antibiotics and tamiflu, and then another 10 days or so before we start stepping down the prednisone.  I'm going to keep the emergency air here at the house until I'm off the prednisone entirely, since that seems to be the thing keeping me breathing once the flu is gone.  

In the mean time, I rescheduled my surgery consults that had been on the calendar for yesterday to happen later in the month and I have a follow up with Dr. T at Stanford on Monday to reboot the chemo plan and hopefully schedule a biopsy on the thing in my lung.  

  

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.  

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. 

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.

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. 

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.

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.