Dr. Chu came to check me out (during dinner of course). He numbed my nostril and slid a little camera up there to check out the sinus. Definitely an infection. They can't drain it until my platelet count goes up more. Maybe tmo afternoon, maybe Thurs.
So much has happened between my last post and now. Unforch, this will have to be the short version of the update. I have been on Norco (very nice pain reliever) for the last few days, and it keeps my head out of computer land most of the day. Norco is great, but I can only have it every 4 hours. By the 3rd hour it usually wears off: the pain comes back, but at least I feel awake enough to do something for a bit -- I usually sleep during the first hour or two of the Norco. Haven't been sleeping well at night recently, so I'll take it when I can get it. Now we get a quick blogging hour.
Basically, the last few days have been about managing the horrible pain I had/havefrom 1) headaches 2) sinus swelling. The headaches, turns out, were a nasty side effect of one of the meds they gave me to help with some mouth issues. Of course, no one told me that a side effect to watch out for was headaches, so it wasn't until my head was pounding for 1.5 days that I demanded a med review of all my meds. "FIND THE CONFLICT!"
It didn't take long for them to pinpoint the suspect. Problem was, they found this out 10 minutes *after* I had just taken another dose (Sunday morning, I think). So the headaches weren't completely gone until Monday.
Of course, by then, the Eagles had given me a headache all kidding aside, I was half out of it for the game and wasn't really affected by the loss. And thanks to the Raiders mot being able to sell out, the Eags game was on regular TV out here. Now if we lose on Thursday...
Can someone please tell me where this sinus swelling came from?
Yeah, it can be hard to open my left eye.
So they did a CT scan on me yesterday and confirmed that there's a bunch of stuff up there, and it's not draining on its own. So this morning, they wanted me to see a ENT doc, but so far, no doc :(. I just called my doc and he said he'd call over to the ENT doc's office again. I really don't to want to waste another day on this, so I'm hoping he comes by today -- it's already 4:45p though.
If I can just have one pain-free day, I'll be pretty close to going home. My counts continue to move in the positive direction, but it's these setbacks that keep me here.
OK, onto the yang of all this pain yin. Carol Franger, a co-worker at Salesforce.com organized a group of people to make me 1000 oragami cranes. She even created a Chatter Group so folks could organize. Here's the description of the group:
We are creating 1000 origami cranes (Senbazuru) for our co-worker John Greene as he battles Acute Myeloid Leukemia.
If you can't make it for the party, stop by Carol Franger's desk--on 8 Landmark near Imua--for origami paper and instructions for making cranes.
Here are two pics of the finished product. One hanging at work, and one with me from last night. Thanks to Benji for bringing it by. Benji's going to keep it safe until I go home at which point, we'll hang it in our new house.
Really amazing and inspirational stuff, Carol. Thank you so much.
By the way, that orange shirt was sent to me from Korea by my good friend S.W.Kang. It says "JG will kick its ass." Thanks, Kang. Miss ya, buddy.
Lastly, one thing to hopefully make you laugh. I saw an ad on The Herd today for Mr. Steamy. Mr. Steamy is one of those magical products for $19.95 that does something you can't live without. This little gem, they claim, if you throw in your dryer, will end your days of ironing. Oh yeah, and of course, if you order now, you get two of 'em (hence the split screen.)
I will kick its ass (even amidst the annoying setbacks),
Blogging tunes: Grateful Dead - So Many Roads Discs 2 and 3.
The setting: it's very cold, grey and cloudy outside, but to the West, the sun is peeking out below the clouds and lighting up the Upper Haight and Ashbury Heights. Here's a pic. Click it for a higher-res version.
OK, here we go... last night was one of the worst sleep nights so far. I probably woke up 10 to 12 times from 9pm to 7:30am. Seriously. Think about that for a second. How can you possibly get any real rest if you're waking up that frequently. Twice, I had soaked through my clothes (night sweats: one from fever, one just 'cause.) I don't know what to make of the other times. Sometimes I had to pee, but other times, I'd wake up for no apparent reason, check the time and say to myself, "WTF? I just went to bed 30 minutes ago." I think tonight I might ask them for a sleeping aid of some kind.
Anyway, After my second night sweats episode, it was a little after 6:00a. I'd had enough and wanted amazing thing number #1: a hot shower.
I can't describe for you the magnitude of just how wonderful showers feel. I've been trying to get one every other day, or at absolute least, every third day. I know my room probably feels warm to folks who visit, but I'm always cold these days. Even colder by the time they wrap my PICC line and I get undressed for the shower. I guess I understand why they wrap it the old fashioned way (a bag with tape on both sides), but hopefully, when they discharge me (assuming they leave the PICC line in) they'll hook me up with one of these reusable PICC line protectors.
Fortunately, the shower gets nice and hot, there's good water pressure, and there's a shower chair (looks like this) so I can just kinda sit there and bask in the warm water. Without my long hair to wash... oh, I probably didn't even post about that yet, did I? Yeah, I think I mentioned that my hair was falling out, but didn't show you Heather's handy work. Well, here you go.
Great job, Heather!
So anyway, back to the shower. Without my long hair to wash, it's really about just letting the hot water wash over and energize me. Oh I wash of course -- they give me lots of washcloths, and I have Floyd's natural bodywash -- but I take my sweet old time. I think I was in there for 25 minutes this morning. Honestly, I didn't want to get out. If I could sit under the warm water for a couple hours a day, I would.
After the shower, I felt pretty good, but was still tired so I slept til about 7:45a at which point I forced myself to get up and do a couple of laps (walking around the hospital floor). This still takes quite a bit out of me, but it helps me gauge how much energy I'm going to have for the day (errr, for the morning at least.)
Judging my energy level accurately was going to be key today because Heather was planning amazing thing #2,which is about 100x better than amazing thing #1: she was going to bring the kids to visit! Now, I hadn't seen Floyd or Orion for 2 weeks. For those of you who have young kids, I don't have to say anymore than that. For those of you without kids, take my word for it: being separated from your family for that long is one of the worst things in the world. I have a new respect for our soldiers who leave their families and go off fight -- this has nothing to do with my stance on war or anything like that, it's just about the people and what they sacrifice on a personal level.
So understand, when Heather comes to visit on her own, or others come to visit, they come to my room. If I'm feeling crappy, that's fine, I just lie in bed, but this is different. The kids don't come up here -- they're not even allowed on this floor, so I have to get disconnected from my IV, put on some "normal daddy looking clothes," get my energy up, and go down to the lobby and be superman for my boys. In fact, today, I even wore the Superman shirt that Heather's parents got me.
The visit was short, but it was amazing. I even brought Floyd his own mask so he could be like daddy. He didn't really need to wear one, but it was pretty cute. He gave me a great big hug which just made me cry like a baby. I just missed him so much. Here are some pics:
Even Orion is trying to get in on the action. Sorry little guy, I had to give your big brother the biggest squeezy hug ever.
Amazing that he actually looked at the camera for this one. Here are two more that I took of Floyd just playing around:
The whole visit probably lasted 20 minutes, which was plenty of time to tire me out. He wanted to climb on me, knock me over, etc. Rather than saying no, I just pushed my limits, and then called it quits when I had to. After the visit, I came upstairs, turned on the Flyers game (via justin.tv) and promptly fell asleep for about 90 minutes.
To my incredible wife: thank you so much for bringing them by. Let's shoot for Monday after acrosports for the next visit.
OK, quick update on my health. Got a fever again last night. Not horrible, 37.9, but a fever nonetheless. I haven't spoken with my primary oncologist in days, but one or two doctors that are part of his crew come by every day. My platelets were low, so I got a platelet transfusion today. Other than that, all the important counts seem to be moving in right direction -- which is great. I think the initial hope was that I'd be a littttttle further along than I am now. Last week, we had talked about a potential discharge date of Monday (11/29) or Tuesday (11/30). This is looking less and less probable by the day. Not a huge deal, but I do have an appointment scheduled for 12/1 at UCSF. That's now in jeopardy.
Also, starting last night, I've started to get some mild headaches. Nothing too severe, but enough that I wanted to tell the docs about it. It's possible that it's related to some of the sinus stuff I've got going on, but I dunno. They give me Tylenol which helps. I wonder if they have something to do with my waking up in the middle of the night.
OK, before i sign off, I'll post a (blurry, sorry) pic of something that will make my dad happy. Yesterday, while I was doing some stuff on the computer, I was listening to some Beethoven Piano works:
Big thanks to DAC for hooking me up with his old iPod loaded with classical music.
Blogging tunes: Phish - Utica 10/20/2010 - Set II; NE@DET
Happy Turkey Day from St. Mary's Medical Center in San Francisco. When I was admitted on 11/5, it didn't even occur to me that I might not be out in time for Thanksgiving, let alone our move (which happened yesterday). But here I am, almost 3 weeks later. Here are some of the milestones that have occurred during that time:
Orion pulled himself up (so I've been told)
Heather and kids moved to San Rafael
Think about how wild this is... on Friday morning 11/5, Heather dropped me off at the doctor for a followup visit and I haven't been back to our apartment since. When I finally get out of here, I'll be going to a new house in Marin. That's whacked.
I've received somewhere around 20 gifts/cards from people (newer ones will be covered below)
including two different T shirts that say "jg will kick its ass!"
I've received close to (if not more than) 100 heartfelt emails from friends and colleagues expressing their encouragement and love
I've watched more SportsCenter than I have the rest of the year combined
Michael Vick has emerged as a legit MVP candidate giving the Eagles real hope at the franchise's first Super Bowl
The Flyers have gone 7-2-1
I've gotten 4 or 5 blood transfusions (that's 8 or 10 units of blood) -- if you haven't given blood lately, please do. I think I've only given 5 or 6 units in my life. That means I'm already negative.
Salesforce.com reported another killer quarter -- have I mentioned that I work for the best company in the world?
So why the 3SF2SB title of this post? Friday, Saturday were great days. A few days after chemo, and I thought I was coming out of it. Sunday was pretty good too, but that turned out to be it. Monday and Tuesday were bad. Bad, bad, bad. As bad as some of some of the chemo days (minus the stomach issues). I had no energy whatsoever, my mouth hurt like a mutha-fukka, and I even got a fever for the first time in several days (a setback, albeit a very minor one) and my appetite slowed down. Turns out my counts were way down, so they gave me some blood Tuesday. Actually, it turned out to be Wednesday -- another classic hospital screw up. Here's how it went down.
I heard from my doc on Tuesday late morning that I'd be getting blood later in the day. Afternoon came and went -- no blood. When I asked my nurse what was going on, she said that they were matching a unit, preparing, etc. By 9pm I was exhausted and wanted to go to sleep, so I did. At 10pm, they come in to tell me that the last blood sample they had from me (to match blood) was expired and they needed to draw more blood. So let's review... we know at 10am that I'm getting blood sometime today, but it's not til 12 hours later that they realize they need a draw blood to do the matching?
So big deal, right? I can get the blood while I sleep. Not so fast. When you get a blood transfusion, they need to check your vitals: 1) before it starts; 2) 15 mins in; 3) 30 mins in; 4) 90 mins in. The unit takes around 3.5 hours (I think), and then you repeat the whole thing with the second unit. This basically ensures that I got no sleep Tuesday night. Infuriating and avoidable, but it happened.
Fortunately, I got a ton of sleep last night and I feel a lot better today, so it's a good day to half watch football and half catch-up on other things (like this blog!) Heaven forbid I go more than a couple days without posting, right Blob? ;) (sorry folks, inside joke)
In other news, and as expected, my hair is starting to fall out. Been losing quite a bit in the shower and been noticing more and more each morning when I wake up, but now it's getting out of hand. This is from my pillow this morning:
Time for Heather to come over and cut it all off.
I've also heard that you lose eyebrows, eyelashes, and nose-hairs. Yeah, nose-hairs, so your boogers just fall out of your nose. Can't wait for that. Apparently, without eyebrows and eyelashes all kinds of crap gets in your eyes. Awesome.
OK, back to Thankful mode... onto the presents. This week, I received not one, but two different T-shirts that say "jg will kick its ass!" Big thanks to Heather/br and Kang. Kang's is shown below, Heather's is in the wash.
Also, the Salesforce T3 Support team (led by Jordan) got me an amazon kindle!! What an awesome present, thanks so much, guys (and gals)... really, REALLY thoughtful of you guys.
Annnnnd, saving the best for last, Meg and Hess got me a baseball autographed by Ryan Madson and an autographed pic of Quintin Mikell! Gotta say, the baseball really takes the cake. Not sure how you ladies work your magic, but it's very much appreciated.
OK, Uncle Dave just showed up. We're gonna watch the Lions blow this lead. Heather should be here soon with a huge pair of scissors too. Load this entry up on your iPad and pass it around the Thanksgiving table -- it'll almost be like I'm there.
Blogging Tunes: The Price is Right; Family Feud; Phish - Berkeley - 8/6/2010
As promised in my last (meaningful) entry, I'm going to share with you some of things that drive me batty, not only regarding my health and this treatment, but regarding the hospital care here at St. Mary's.
Before I get started with that, let me just say, that as we come off a wild-and-wacky Eagles win and enter Thanksgiving week, this is a time to really reflect on all the positives, so let me take a moment to do that before I get to the more cynical (and less serious) portion of this post.
I consider myself extremely lucky right now. Yes, the cancer patient feels lucky. Why? The amount of love and support that is flowing my and Heather's way right now is truly remarkable. Tough times bring out the best in people, and we got some pretty darned best people in our lives. I'm not going to individually thank everyone here, but if you have, even once, helped Heather with the kids, or helped with the move, or sent a card, or sent a gift, or even just sent an email or text with your thoughts.... THANK YOU for being part of this. I know it sounds cliche, but it's true: we could not be doing this without you!
OK, now for the annoyances.
Annoyance #1: health related
One problem with chemo is that really goes after rapidly dividing cells. So not only does it hit the cancer cells, it destroys your GI tract and it tends to affect your gums, mouth, tongue, etc. Now I generally take really good care of my teeth, so it's a little frustrating that my gums are so sore and tender. The tenderness makes it hard to floss, not flossing make it worse, and the cycle repeats. I flossed the morning and actually cried out in pain on a few of the teeth. Ugh.
You may have read that mouth sores are part of this as well. Total friggin nightmare. Thank God for the "magic mouthwash" they give me. Not only does it have a healing agent, but it's got something that numbs as well. It's hard enough to eat as it is, navigating around landmines in your mouth is just too much.
Fevers were a pretty big problem last week, but (touch wood) I haven't had any in the last three days and they've removed one of my antibiotics. Last week, though, it was bad. My temp would spike up, I'd get chills, and have to take Tylenol. Then I'd get sweats, have to change clothes, my fever would break, and the cycle would repeat. Sometimes multiple times a day. Fevers are bad because I'm extremely susceptible to infection right now, and it's imperative that I don't catch anything.
This actually started happening before I was admitted to the hospital and has continued on and off for the past two weeks. I assume it's just my body's way of getting rid of toxins, etc., but it can be pretty jarring (not to mention uncomfortable) to wake up at 3am completely drenched. Not talking damp, talking soaking wet shirt and often bed sheets too wet to sleep on, so I gotta call the nurse, get up, get my shirt off (PICC line disconnect required), towel off, get another shirt, and sit with a blanket while the nurse changes my sheets. This whole ordeal actually happened twice a few nights ago. The second time was around 6am, so I just took a shower. I don't shower much.
Annoyance #2: nurse response times
There's a red call button on the TV Remote...
you're supposed to press it day or night for assistance. The problem is the response times are wildly inconsistent. Sometimes, someone answers right away (via intercom) or my nurse comes in reasonably quickly (within a minute), but sometimes, nothing happens for literally 10 or 15 minutes. Now for me, this isn't that big of a deal. I can either wait, or if something really serious, I can get up, go to the door and make eye contact with the nurses station.
But what about the other patients? There's this old guy in the next room... I happened to see him standing at his door the other day when I was doing laps. He was telling a nurse that he had been in the bathroom and pulled one the bathroom "help" strings, but nobody came. Sorry, that's not acceptable.
Annoyance #3: unnecessary blood draws (at 4:30a!)
Here's the schedule. I usually to go bed between 9 and 10. Someone comes in to check vitals and drips at 11:30p and then again 3:30a. Then at 5:30a I get my blood drawn. It's a little much, but I'm used to it by now. It's not all that different than life with two little kids. Here's the problem: sometimes, whoever writes the order for my blood draw fails to indicate that I have a PICC line. Why does that matter? Well, drawing blood from the PICC is something my night nurse can do. Drawing blood from my vein requires a different person (on a different schedule) to do the work. Now sometimes this is necessary.... sometimes they have to take a "blood culture," and for that, they can't use the PICC line, so I've had a couple of those at 4:30a. Fun.
But last week, not once, but twice someone came in at 4:30a for a regular blood draw. "Misser Gleen, I here to draw some brudd." The first time it happened, I'd had some night sweats and was getting back into bed at 4a. I think I got to sleep around 4:20a, when 10 minutes later...
So I woke myself up, raised the head of the bed, and got ready for the inevitable. That's when I realized that I'd had a blood culture taken the a day or two before. I said, "Do I really need another culture? I just had one." She said, "oh no, diss not kulture, diss just regular brudd draw," at which point, I held up my left arm so see should see my PICC, looked over at her, and just kinda shook my head. She said, "ohhh, you have PICC, oh I'm sahlee, I have your nurse do it rater. Go back to sleep."
OK, honest mistake, it happens. No big deal, right? Well, the same exact thing happened two mornings later, and let me tell you, I wasn't as nice about it. I know I don't have room for any negativity right now, but I'm sorry, I need my sleep, and this is reeeallly easy to avoid. This time, when she came in, and I saw the familiar blood tubes on her cart, I just said, "Culture?" She said, "No." So I replied, "Please get out and talk to my nurse," and rolled over.
The next morning I told Doogie and we decided to put a note on the door that would hopefully prevent future errors. So far so good.
Annoyance #4: big meals when I'm not hungry
So remember last week I couldn't eat, right? Well, I still have to make my menu selections every day, so I do my best to pick entrees from which I might be be able to choke down a few bites. Well, this annoyance centers around portions.
Smartly, the menu actually includes a "small portions" check box. When I was first admitted, and still had my full appetite, I wondered where the "large portions" check box was, but once in the throes of chemo, I was looking for the "iddy biddy portion" check box.
Anyway, on this particular day, I ordered the pork for lunch and checked the "small portions" check box.
Now I ask you, does this look like a small portion?
Forget lunch, that's a full-sized dinner plate. What a waste. Doesn't happen too much, but happens once in a while.
Oh, and then there's the water situation. Scroll back up to the menu pic, see how it says "2 EA bottled water?" (it actually used to say "3.") They bring me two bottles of water with every meal. Problem is, last week, I wasn't eating or drinking much of anything, but the waters kept coming, and coming, and coming:
Gettin' a little out of hand, huh? Fortunately, last night, Brandon, Loftie, and I drank a bunch watching the Eagles game, so now the stash is about cut in half.
Annoyance #5: doors
Here's a simple rule of thumb. When you enter someone's room, take note of the position of the door (closed? open a crack? open halfway? wide open?) and leave it the way you found it. I can't tell you how many times I (intentionally) have the door open a crack for airflow. Still, when some of the nurses/doctors leave the room they close the door behind them. I'm always like, "hey, can you leave the....." -- but by that time they are gone -- too late.
Annoyance #6: mailroom malfunctions
This one's primarily for my brother, but I'm sure his gift wasn't the only one subject to a mailroom malfunction. As you saw in last week's post, my bro sent some Philly sports posters to spice up my hospital room. Originally, he was hoping they would come from for MNF last week (Mon 11/15) but the the best the poster place could do was Wed 11/17. Well, Wednesday came and went. On Thursday, the tracker showed that St. Mary's had signed for it at 10am on Thu 11/18, but it was nowhere to be found. Even with my brother's calling the hospital, and me asking my nurse to check into it, it took until late Friday afternoon for them to track it down. That's a little annoying, don'tcha think?
OK, that's all I'm going to say about that stuff. We now return you to your regularly scheduled, upbeat, happy-as-a-clam bloggie woggie. Go Eagles!
I figured just about everyone reading this blog has a google account, so I also figured everyone would be able to "login to comment." Alas, several people have told me that they couldn't figure out how to comment on blog posts. Well, today's your lucky day (Dougie, Johan, others). I've changed the comments setting so you don't have to be logged in. Now anyone under the sun can comment. As long as the spam bots don't find me and start using the comments for advertising, I'll leave it set like this, so y'all can comment away. Enjoy!
All that said, isn't it cooler to actually login, become a follower, have your little icon there, etc? ;)
Blogging tunes: Grateful Dead - Reckoning; Tangerine Dream - Hyperborea, Le Parc, Logos
So much has happened since my last post, so unless I take a turn for the worse, this is gonna be quite an entry. So sit back, have a drink (wish I could), and relax while you read this long, wacky update.
Let's start with my health and how I'm feeling. Yesterday (Friday 11/19) was the best I've felt since the chemo effects started mid-last week. I was actually able to eat a little bit of each of my meals. Best foods? Cheerios with low-fat milk and soups. I may not eat much else for lunch and dinner, but I'll always eat the soup. :)
You gotta understand, from Tuesday thru Thursday this week, I think I had 2 tiny orange sherbets, a half a can of sprite, and a couple little apple/cranberry juice cups and that's it. That's not going to get your metabolism up, now is it? Part of it is that my GI tract is starting to rebuild. Know how I know? I can actually fart! Now you might think that's funny, but it's a huge step. For the past week, if I felt like I had to fart, it was time to head to the can and fast -- seriously -- no taking chances. So hooray for farting!
Today (Saturday 11/20) I feel about the same as Friday, which is great. Both days saw me make 3 laps around the 8th floor in the morning. Yesterday, I even made my way to the piano for the second time! Now that my IV is just fluids and antibiotics, I'm allowed to roam the hospital free. (More on the piano episode below.)
My doctor says that I'm doing well, responding to the induction, just as I should. We got a lot more information back (pathology, flow cytometry, etc.) about the AML specifics, etc. I'm not going to go into huge detail here, rather, I'll just say, that we still have every reason to believe that this is treatable and beatable. My doctor, and a couple other experts are going to pow-wow this week or the week after to see if they can come to a consensus on "Part B" -- the remaining part of the treatment. Part A is pretty easy/standard It's same no matter what: 7 or 8 days of intense chemo and then a 3-4 week recovery period (we're about 3 days into that right now) where they give me antibiotics, as well as blood/platelets as needed, watch all my counts, make sure I don't get any secondary infections, etc. Part B is much more of a science, because every case is different. They need to scrutinize every single data point they have about me, add in any other risk factors, and try to come up with a plan/recipe for treatment for me. Hopefully they can come to a quick consensus and then we can just execute. The problem will be if two experts vehemently disagree as to the course of action. That might be weird.
OK, lets move on to visits. Visits from friends have picked up the couple days since I've been feeling better. Assuming this keeps up, if others want to visit in the days leading up to Turkey Day, drop me an email and let's see if we can set something up. And yes, I'm going to be here through Thanksgiving. Earliest I could possibly be out is the Sunday after, but it'll probably be a few more days after that.
So in addition to Heather coming to see me just about every day -- which are the best visits in the world -- I've seen Tripp, Brown, Brandon, and Kirsten in the last 48 hours. I think Kat-dawg is swinging by this afternoon too. Kirsten brought me (and Heather each) a red RELENTLESS bracelet which I am now wearing with pride. Brown brought me one of my favorite family photos -- a picture of all of us at a baseball game -- along with a nice Grateful Dead poster.
Brandon stopped by to help with a fun task. My brother recently sent me 4 posters -- take three guesses what they are of -- and Brandon helped me hang them up. Actually, he didn't help me, he did it all. Thanks, B!
Lunch just arrived. Let's see... whaddawe got? Woo! Minestrone soup and Mac-n-cheese! I may actually eat quite a bit of this!
OK, give up on the posters? Philly sports, of course! We decided to hang three of the four (sorry, Iggy, you lose, cuz). Here are the pics. Tripp does not like one of these:
With all the family photos and now the sports stuff, my room is finally starting to feel like less of a hospital room, and more like a place where I'm just hangin' out for a while. Big psychological difference there, you know? Great present, BoM, even if it took a couple extra days for them to deliver it (more on that in my next blog post "Annoyances").
Speaking of presents, I just want to give props to some people who sent some pretty cool stuff recently. In addition to the red bracelet, and the posters mentioned above, Sam/Lucy/Adam/Mary pitched in for some awesome noise-canceling headphones. As my etymotic er-6 isolation earbuds are startin to flake out, this gift couldn't have come at a better time. I've always been on the isolation side of the isolation vs. noise-canceling debate, but I gotta say, these Bose sound phenomenal. I'll always want etymotics for certain things, but chilling in a hospital bed is a great use-case for noise-canceling and where the bulk isn't a factor. Thank you, guys.
Next, someone got me the perfect shirt: an old school Superman shirt. Problem is, there was no note, nor was there anything indicating the sender's identification. Soooo, whoever sent it please stand up and take a bow.
Shifting back into philly gear, Eric and Tracy Simon sent a huge Eagles tub (trash can?) filled with all sorts of preserved Philly food (like Tastykakes). Unfortunately, I didn't snap a pic of it before Heather took it up to Marin. Congrats, guys, your present is one of the first things moved to the new house.
Moving on, many of you will be happy to know that I finally made my second trip down to the 5th floor to play the piano. Now that my IV machine is just stuff like fluids and antibiotics (along with the occasional blood and platelets) I can come and go as a please. So after lunch yesterday, I went down and played for a little over an hour.
I gotta say, as far as upright pianos go, this one isn't so good. It's not that it's that badly out of tune -- I mean, it could definitely use a tune -- but it's just not dynamic at all. For example, it's really hard to play quietly without using the soft pedal. A lot of times, I just want to kinda space out and that's hard wihen the instrument doesn't provide the player with dynamics. You know the expression "tickle the ivories?" There's a reason for that. If you want to gently tickle the keys you should be able to. Not here.
Anyway, here's the setlist for those of you keeping score at home. I'm sure some of the titles will look foreign to some of you. Who can figure out what "Beach Theme" is? I know one active follower of this blog that should absolutely know.
jg - 11/19/10 - St. Mary's
Wots ... Uh the Deal >
Backwards Down the Number Line >
Here Comes Sunshine
Beach Theme >
Breathe Reprise >
The Great Gig in the Sky
Us and Them >
Any Colour You Like
Brain Damage > Eclipse
So Far Away
Despite the fact that my PICC line kept tugging at my arm, and that people were coming and going, talking, working, what have you, I felt like I played ok. The Dark Side stuff is definitely my favorite to play right now.
I was going to author another section on some of the annoyances that have occurred here over the last week or so, but I think I'll save that for a separate post. For now, I'll close with these two pics of a huge rainbow that shone over San Francisco this morning. While Kat-dawg's picture is better overall:
Dave's pic shows the rainbow ending right at St. Mary's Hospital:
Tunes this afternoon: Tangerine Dream - White Eagle, Stratosfear, Firestarter
The first seven days of chemo are done. Wish that meant I was going to feel better today. Apparently, the first week of "recovery" can be just as bad as the chemo week... and let me tell you. It's bad.
It's funny (strange), but I get texts, gchats, emails, where people say, "how are you feeling today?" or "how are you holding up?" and the thing is, while I know people are just asking because they care, there's just no way to answer stuff like this in any meaningful way, because there just isn't the context. I mean, how I am I supposed to answer? "Today's not such a good day"? What can that really mean to people? Should I give the play-by-play about the excruciating stomach cramps I get every morning and all that goes along with them? What about other horrible discomforts? I actually want blog readers, so I'm thinking not. If you want, just look up the side effects of chemo and rest assured that I'm experiencing most of them.
Ha, perfect. I'm just getting started here, and large Russian voman, strong vith plow, comes in to tell me she needs to draw my blood, and no, not from my PICC Line, but from the vein on my other arm. You just gotta laugh at shit like this, because it happens, and it's going to keep on happening.
OK, blood drawn, let's continue. Truth is, the last few days have been really tough. I literally haven't had the energy to do anything -- even sit down at the laptop. The only reprieve came on Monday from about 4p to 8p PT. Coincidence? God's will? I don't know, but all I know is that, for a few magical hours, my body gave me a break and I was able to fully enjoy one of the most amazing football performances of my lifetime. And, just as important, I was able to share the experience with two good friends: Charles and Tripp. I even ate a small slice of pizza. So psyched that this week's game (vs. NYG) is on regular TV. Thank you, schedule-makers!
All I know is that besides that chunk of time, merely getting up to go to the bathroom literally takes every ounce of strength I have. So I just lie in bed most of the time. Tuesday was great because I just watched sports highlights most of the day. No, I didn't get sick of seeing Vick's heroics, the Halladay Cy Young, or the truth about Donovan's contract for the umpteenth time. In times like this, you relish in that stuff.
This morning was a little more challenging. After watching The Herd for an hour on ESPNews (I had no idea Colin's radio show was on TV -- I really like that dude -- sometimes, when I used to drive Floyd to daycare in the morning, I'd get to listen to him for 10 minutes -- not sure what it is about him, but I dig his shtick, even if he's not sold on Vick yet) I had to find stuff to watch.
I couldn't believe some of the old game shows (TPiR and Family Feud) were still on! Sometimes "old things" or "well known things" are comforting. Still, TPiR contestants are still as dimwitted as ever -- look at this chick for cryin-out-loud, and no, of course, she didn't win the showcase showdown:
Not quite the same without Bob Barker either, but it was a good way to kill an hour. The Feud was just as entertaining as ever, the new host was pretty good, and of course, the questions are a little raunchier. What do you think this question was?
I'll give you a hint. It started, "Name something you'd be shocked to hear that your grandmother...."
Eating has been the hardest thing. In the last 4 days combined, I probably haven't eaten as much as a normal person typically eats for a light dinner. Fortunately, we found some things that work. Orange sherbet is good, and, when that's not available, you can take a cup of apple or cran juice, stick it in the freezer for 20 minutes, and have poor-man's water-ice.
I also try to eat one triangle of toast each morning, but it's tough.
Oh yeah, I've been meaning to post the picture of the lava lamp that ejs sent me. Here it is:
Pretty cool that you can actually see the city lights in the background. They actually made me put it way yesterday because there was some inspection going on. Now that that's over, I think I'm going to re-set it up
The amazon packages keep coming and coming. Today I received seven (count 'em, 7!) books from my brother-in-law. Matt, if this treatment takes so long that I can get through all of those books, we're all in trouble. Here's 6 of them:
What to eat? Dude, I can't eat! Well, maybe at some point I'll be able to eat. The seventh one is the one I think I'll start first. Why? Because my portrait is on the cover:
See? The dude's got all the drugs flowing into his PICC Line and he's got the stupid urinal in the other hand. He doesn't look like he's having a good day, does he? At least I don't have to wear the stupid hospital gown.
On a more serious note, I'm expecting a bunch more details from my oncologist today. I'm going to try to take notes if I can, because it's hard to remember what he says most of the time. Also, I want to mention that I received the most inspiration email from one of my colleagues at work. Kirsten, I want to publicly thank you for your warmth, words of wisdom, and compassion. Both Heather and I will definitely be in touch with you as we navigate this difficult journey.
A few folks were concerned that I didn't get a post up yesterday. I guess I set the wrong expectations by blogging so much during the beginning. I pretty much felt like shit the entire weekend, so I had to take a day off from posting. The reality is, the post frequency may fall off quite a bit, I really don't know. I'm not going to get into the gory details of all my discomfort as some of you are probably eating your morning bagel right about now.
But I will say this... with the exception of making two slow laps around the 8th floor yesterday morning with Doogie, I pretty much lay in bed all day and watched football. Not having the package kinda sucks, but at least there were good games on in the morning (MIN/CHI, CIN/IND). I was bummed I didn't get to watch the cowgirls, but STL/SF wound up being a great game. Of course, tonight is the game that really matters. Hopefully I'll feel up to having visitors. The blood I got yesterday seems to be giving me a little more energy. Charles and Tripp are tentatively scheduled to make an appearance.
The rest of my family had a much different (better?) Sunday. We got one of those fluky days where it was really warm out -- even by the beach. Tripp and Monique were kind enough to take Floyd for most of the day, and Auntie Na Na took baby-O. Looks like everyone had a great time, and Heather got some time to deal with the new house, moving prep, etc.
Here are some pics from the beach. Floyd and Evans looked like they had a blast. Thanks for sending, Tripper
And here's one of sleeping O. Thanks, Naomi!
So it's Monday. My 7th day of chemo and the day we hopefully find out a little more about what lies ahead. Let's hope for a good day. Go Eagles!
What I wouldn't give to be able to go to the Cal/Oregon game today. I don't really even like College Football, but Charles has turned me into quite the Ducks fan, and now that means more than it ever did. At least it's on regular TV.
Worst night so far sleep-wise. Turns out there's some utility closet directly across the hall. All night long people going in and out, not really being careful to close the door quietly. Oh well, what can you do? I just forced myself to get the eff up, open the shade and soak in the sun and the beautiful view. It helps, but I'm definitely low-energy today. They say my red blood count is dropping, so they are going to give me more blood. Not to sound like a chapter out of Twilight, but at this point, I'm not going to say no to blood. When I got my first transfusion last Friday night, it made me feel 10x better.
Haven't been able to eat much lately -- as expected. Literally didn't touch my dinner last night. Just water, ice chips, and cranberry juice. They are probably going to breakfast soon. Maybe I'll eat a piece of toast.
Doogie Hauser, my resident dcotor dude just came in looking a bit haggard. He's a good guy. I like our morning talks.
Gonna rest for a little while and then maybe take a walk when Brown visits.