Saturday, June 28, 2008
It's almost noon on Saturday and I'm back at Dino HQ, working on the home desktop and, all things considered, feeling pretty good.
I checked out of the hospital yesterday afternoon and was given a variety of medications to help control my pain. So far, I have no complaints -- there is the usual stomach discomfort from the incisions, but nothing is too overbearing, and my home bed and all its attendant pillows were quite a bit more comfortable than the hospital bed.
Last night I turned the lights out at 9 PM, and dragged myself out of bed at 8:30 this morning. No, I didn't sleep soundly the entire time -- there was lots of intermittent dozing, occasional forays to the bathroom, and periods of trying to find a real comfortable sleeping position -- but overall, it was far more rest than I've had in the last week. I expect that to get better on a nightly basis as the pain subsides and I get used to being in the home environment.
As I wrote last week when I came home from the hospital the first time around, there is definitely a culture shock in moving from the hospital to home, especially when you factor in the drugs I'm taking and some of their side effects (in this case, general drowsiness and a decrease in lucidity). After a week of constant interruptions day and night, you come to expect these sorts of things and when they don't happen, as was the case last night, the groggy mind tends to ask itself "wait a sec -- how come nobody's busted into my room in the last hour to check my pulse?" Like everything else associated with my recovery, this too shall pass.
This morning I brushed my teeth and shaved my face clean. My head of hair is far too long now, especially given how thin my face has become, and I'm going to have my mom give me a severe haircut tomorrow when she comes back up. (Back in the day, when bowl cuts were all the rage, she used to cut my hair on a regular basis. That ended around 1984, when I finally figured out that it wasn't 1975 anymore.) Once chemo begins, I'm going to shave my pate completely clean anyway, but for the next few weeks, I at least want to keep it in check so that it's not spazzing out all over the place.
Aside from that, I'm gonna rest and relax for the duration of the weekend. The pain meds are still leaving me drowsy and a little bit out of it at times, so I'm not sure about visitors quite yet, but when next week starts and I have a bit more energy, I can probably host a few people here and there for short periods of time... we'll see.
That's about it for right now. I'm off to read on my sweet new Amazon Kindle, maybe play a video game or something, and work in a nap (or several). I hope everyone enjoys their weekend -- get on outside if you haven't been there already today!
With much love,
Thursday, June 26, 2008
For the most part, the various medications I'm on are doing a decent job of dulling the pain, but it's still there. I'm not sure if it's ever going to completely go away until I'm healed, though, so maybe it's supposed to sort of always be there. Life tends to be best just after I get a shot of dilaudid, but when that wears off, the pain comes back.
Yesterday my pain doc upped both the available frequency and the dosage of dilaudid in pill form, so in my eagerness to control the pain, I had a shot and three pills at 11 AM and then again at 1 PM. Shortly thereafter, I was a groggy mess -- definitely too much medication. Whoops. I gave it several hours before taking anything again so I could get my mind and body back under control.
So, here it is Thursday mid-day and I've received several texts and emails asking if I'm okay, since the blog has been out of commission. Thanks for the concern -- I'm here and I'm fine, and in the "Best News of the Day" Dept., it looks like they are going to send me home tomorrow with two new pain med prescriptions. The thought of my own bed and some unimpeded rest is tantalizing.
See, as I've written before, hospitals are not a place for people to actually sleep. There are a variety of reasons for this; for me personally, one is that since I've been here at Alta Bates, I've been on constant IV drip nutrients. The good side of this is that I've gained a little weight -- you can see it in my face and feel it in my gut. The downside is twofold: a) it suppresses my appetite (so I haven't eaten much since I've been here) -- but more importantly 2) it keeps me constantly hydrated and constantly having to relieve myself. We're talking multiple times an hour here. Ergo, do the math: it's impossible for me to sleep for any large stretches of time because I'm continually needing to go wee-wee!
(Sorry for the above terminology, but we had to change the original description since this is a family blog. --Ed)
And remember how earlier in the week, I said that the nurses here were far less intrusive than they were at Stanford? Well, scratch that. Bottom line is that, during business hours (5 AM to around 11 PM), most hospitals are probably pretty much the same in terms of how often they will disturb a patient for any number of things. If you can grab some sleep in the off-hours (which, thanks to the aforementioned IV drip, I really can't), then all power to you -- but from before sunup until after sundown, there will be any number of nurses, nursing assistants, doctors, surgeons, clinicians, dietitians, service volunteers, custodians, specialists, and the like who will come and go as they please, performing their various tasks both in your room and on your body, guaranteeing that you will not sniff an ounce of undisturbed rest for the vast majority of your day.
It's not that I don't think these people are unnecessary or that I don't appreciate them; everyone's got a job to do and for the most part, all the pieces fit together to move the patient forward to the point where they can go home. It's just that at certain points, the timing of the whole thing is actually comical -- for instance, I'll get a pain shot that leaves me sleepy and relatively pain-free, and all I want to do is catch some shut-eye. Then, over the course of the next 90 minutes, I will get the two-cursory-door-knocks-and-then-enter routine from:
* An assistant who needs to take my vitals;
* A surgeon who wants to check my stomach to see if the scar is healing;
* A custodian who is swapping out the garbage bags;
* A clinician making her rounds, who wants to talk about medications I'm taking;
* A nurse, who checks in to see if I need anything;
* A dietitian, who wants to get my food selections for tomorrow;
* Another dietitian, who wants to talk about my appetite;
* Another doctor making the rounds that wants to see if my scar is healing;
and so on.
(I can't tell you how many people each day check my scar to see if it's healing correctly. I expect they'll be holding some sort of public symposium on it before long.)
These people tend to arrive at intervals ranging from 7-15 minutes apart from each other; before long, the 90-minute window of relatively pain-free sleep opportunity has closed, and now it's lather, rinse, repeat until the lights go out late at night, the hustle and bustle shuts down, there is a more definitive chance to get some real sleep... and I keep going wee-wee three times an hour through the night.
So. That having been said, as you can see, I'm really, really tired at this point -- but the fact is, until I get home, I'll just have to live with being really, really tired. And yes, I know it's all part of the process of getting better, but the simple act of sleeping is really integral to that process as well, and it's cruelly ironic that a hospital is one of the worst places for a sleep-deprived person to be.
Ah well. Like I said, everyone's got a role to play and I appreciate that. The people here have been good to me, and it's just another step in a long healing process -- and there'll still be a long ways to go on this journey once I get home. My parents had a consultation with Dr. Jacobs at Stanford yesterday to discuss the upcoming chemo plan, and we'll have a similar meeting with Dr. Checci here at Alta Bates probably sometime next week, since I'll likely be doing my chemo here. But mentally, that's not even on my radar at the moment; all I want to do for the next few days is just get some rest, if possible. If the pain comes back strong, we'll figure out a way to deal with it. Otherwise, I likely won't start chemo for a few weeks and therefore don't want to think much about it for the next several days.
You know, of course, that in the 30 minutes that it's taken me to write this post, not one person has come into my room. Let's see what happens once I log off and crawl back into bed!
I'll check in tomorrow once I'm back at the homestead and have caught up on some Z's. Until then, thanks as always for your never-ending love, prayers, thoughts and concern. Enjoy the rest of your Thursday and I'll talk atcha soon.
With much love,
Monday, June 23, 2008
Having spent close to three full weeks in the hospital over the past month, I've had ample opportunity to watch more than my fair share of television during this time. Frankly, there's not much else to do besides read, and I've done some of that as well, but since I've been on painkilling drugs that alter my lucidity much of the time, watching TV is the easiest and most brainless pastime there is at the moment.
Despite the presence of my 50" high-def TV at home, I actually don't watch that much TV in my free time (this whole hospital thing excluded, of course), so while I was vaguely aware of the pathetic state of the boob tube, I had no idea as to the extent of just how ridiculous the whole thing really is. From the programming to the commercials, it's hard to accurately summarize in words just how much complete crap there is on TV, but I'm in a saucy mood, so I'll give it a go.
First off, put yourself in my shoes for a moment. You're facing a life-threatening disease and while you have all confidence that you'll win the battle and enjoy a long and prosperous life, you need to always keep your mind focused on positive thoughts and concepts. Meanwhile, you're receiving a constant flow of painkilling drugs that slightly alters your perception of what you see and hear, amplifying the extremes of the emotional spectrum. Ergo, the highs get higher and the lows get lower, and anything with a negative connotation has a more severe effect than usual.
Now that you know a bit more about where I'm coming from, here's what I've learned by watching the 20ish available channels (ESPN not being among them) here at Alta Bates over the last three days, as well as the 25ish channels I had at Stanford before that:
* Over two million customers have switched their phone service to Vonage. I know this because a smug woman tells me so in the same commercial three times an hour, regardless of which channel I happen to be on. Discovery Channel, Food Network, whatever -- the same commercial airs all day, every day, everywhere.
* Apparently Hulk Hogan is really important at the moment, because every time I flipped through Headline News when I was at Stanford, he was on the TV. I have no idea why he's important because I refuse to stop and read the headlines regarding him, but from what I can gather, the world is revolving around Hulk Hogan at present time.
* I can't stop on CNN for too long because 90% of the stories deal with gas prices, the energy crisis, some sort of murder or death or mayhem, or other news that doesn't exactly feed a positive mindset.
* Invariably, network programming presents the same dilemma, unless I happen to stumble upon a comedy. I can't watch any drama shows because half the time there's someone getting killed or the story revolves around someone with a disease, and again, this is not the sort of stuff my mind needs to be focusing on at present time.
* I can always go to the History Channel for a little non-fiction fix, but last night they were running a series called Ice Road Truckers or some such thing. Are you kidding me? What happened to the "History" part of the "History Channel"? And why would I care about ice road truckers? What's next -- they gonna do a show about how deadly it is to fish in open waters?
* The TNTs, TBSs, and USAs of the world have completely given up when it comes to weekend programming. Yesterday I checked these networks several times over the course of the day and I kid you not, these channels were repeating the same movies all weekend. One of the channels showed Spider-Man on both Saturday and Sunday; another channel alternated between Iron Eagle and A Knight's Tale all day yesterday. So let me get this straight -- if I missed that all-important showing of Iron Eagle (a really crap movie from 1986, for what it's worth) at 11 AM, I can still catch repeats at 3 PM and 7 PM? Great, thanks a ton.
I mean, come on, at least try and mix things up a little, would ya?
* Along the same vein, last night A&E was alternating between hour-long blocks of The Two Coreys and Gene Simmons Family Jewels. Setting aside for a moment the fact that these two shows even exist in the first place, whatever happened to the network that brought us Biography? Now that was a show that was often worth watching.
* Apparently pharmaceutical companies have developed quick-and-easy solutions to just about every medical condition out there (except my own), because ads for drugs simply cannot be avoided. It's such a pleasure to be watching a comedy or something, have the show cut to an ad break, and hear a narrator say something like "If you have Type 2 diabetes, then we've got the answer for you..." or something similar. Makes it real easy for me to keep my mind off my own particular medical condition.
So, to sum up: I can't watch the news because it's too depressing, I can't watch network programming because it's too dramatic, I refuse to watch reality TV because it's all crap, and even the commercials are a detriment to my mindset. Therefore, I've been reduced to looking for Seinfeld reruns or even scraping the bottom of the barrel and watching old episodes of Home Improvement (a show that I used to enjoy back in the day, but can now watch for many consecutive hours without laughing once).
Ah well, thus endeth my rant. Thankfully my mom is dropping by to bring me my new Amazon Kindle, which a friend so graciously bought for me, so I'll give that a go and maybe try to do some more reading. I'm sure I'll do some more channel surfing this evening, but I've developed a pretty quick trigger finger for the on/off switch when I find there's nothing even remotely worth looking at (which is typically the case).
Still haven't talked to a doctor yet today, so I'm not sure of how long I'll be here, but as always, I'll keep y'all posted when I find out something new. I'm going to get up and walk around and get a little exercise now before the next pain shot arrives in a half-hour or so... and then maybe I'll look for a repeat of Friends to send me into a quick catnap.
With much love,
Sunday, June 22, 2008
It's Sunday afternoon and I'm looking out at the Oakland hills from my hospital room at Alta Bates, awaiting a shot of dilaudid (a stronger form of Sister Mo) that will be coming my way in about 10 minutes.
I've been here since early Friday morning, when I went to the ER for pain control. The pain pills I had at home simply were not doing the job and I woke up just after midnight on Friday in pretty good pain. They checked me into the hospital in order to get me on a pain control protocol, so for the past three days, I've been on a combo of dilaudid shots, pills and now a patch attached to my skin that will gradually help get the pain under control in the next few days.
I'm not thrilled to be here, but aside from the absolute suckiness of the TV (unbelievably, they don't get ESPN, so I missed today's Italy-Spain soccer game -- although from everything I've read, I actually didn't miss much, as it was a dull game and Italy deserved to lose), things aren't that bad. I have my own room, the setup is reasonably comfortable, the view is nice, and most importantly, my stomach pain is being handled in a way that simply would be impossible if I was back at home. The fact is, the pain isn't excruciating, but it's bad enough that it needs more direct attention (as in, through direct injection) than I could get at home.
Also, while all my vitals are great, my white-cell count is running just a tad high, so they have me on antibiotics just in case I have a minor infection somewhere. From what I've been told, both the pain issue (obviously!) and the infection issue are not uncommon after major surgeries, so at the moment, the situation is not a cause for worry -- it's just an annoyance more than anything else.
So, it's been a long, lazy weekend and the doctors will re-assess my situation tomorrow. The initial guess from the on-call doc today was that it will be at least two or three days before I head home, so I can expect to be here until Tuesday if not later. If I was still sharing a room with someone at Stanford, this news would be very discouraging -- but the nurses here are far less intrusive (since they don't need to keep me under constant observation) and I'm not constantly being disturbed for pills and shots and other continual interruptions that keep a hospital patient from actually, you know, resting. Plus, the private room makes this stay a lot easier to bear, so I can deal with a few extra days in the hospital if it means keeping the pain to a minimum.
That's the scoop! I hope everyone had a great weekend and I'll check back tomorrow with the latest. Now it's time for another dilaudid shot and maybe a nap. Come to think of it, maybe this whole surgery thing ain't so bad after all...
With much love,
Friday, June 20, 2008
At any rate, while he's not happy to be back in the hospital, he is happy that he's got Sister Mo again. His level of pain is more or less consistently around a "3", so it's not terribly elevated, but he told me he was frustrated, which we can all understand. He continues, of course, to keep the faith (hasn't let down one iota in that area), so let's see if this thing will settle down and we can get him back home tomorrow or Sunday. Can't tell if it's just a bump in the road - maybe this is a somewhat typical post-op response? As usual, we luv ya for all your good thoughts - our man is powering on.
Wednesday, June 18, 2008
It's Wednesday afternoon and I'm biding my time until I get to take my next painkiller pill. The pain isn't overly brutal but it's noticeable and unless I can find the right position in which to sit or lie down, it's constantly there. I get to take a pill every four hours and right now there's about 30 minutes to go before the next one might bring some relief for a while.
So I'm mostly settled in at home and mom is out running a few errands. I did get some sleep last night -- not the whole night by any stretch, but short patches here and there, and that whole process will get easier as time goes on. This morning, I washed my arms and legs -- there's still a lot of tape residue on my arms and my mom is going to grab some baby oil as suggested by Francesca in the comments to my last post -- washed my hair, brushed the teeth and shaved. Then I stood back for a good look in the mirror.
The face and body staring back are very unfamiliar. I've lost a ton of weight and my face is now very gaunt and (I never thought I would ever say this!) far too thin. Someone posted a picture of me on Facebook from when I wasn't too far from weighing 200 pounds and my face was really chubby, with chipmunk cheeks -- well, that was 40 pounds ago. My cheekbones really stand out now, and I almost feel like my eyes are bugging out of my head.
It's very odd to look at myself like this and I'm looking forward to the return of my appetite and the process of putting on some pounds (which are going to come right back off once chemo starts), but right now, I'm struggling to eat a lot of food. I know that this, too, shall pass, and once again the bells will ring in the town squares and the criers will joyously sing to the masses "Yea, verily, he returneth again to the Tacoe Belle for the fifth time this week!"
As for my body, well, it's a mess. Since reaching adulthood, I've gone through phases where I could reasonably be described as "stocky," "chubby," "packing a few extra pounds," and "boy howdy, try mixing in a salad every now and then, man!" Now? Now, I can actually feel the bones on my backside when I sit on anything that's not cushioned. Now, I can probably fit into a pair of size 30 jeans (although I won't be wearing jeans anytime soon -- it's pajama bottoms for me for the next week at least). Now, my arms look frail and my legs look thin.
Looking specifically at my stomach is probably the toughest thing for me to do without cringing. There's a huge blue scar that begins at my waist, runs vertically up through the belly button to the middle of my stomach, makes a 90-degree turn to the right side of my body, and then does another right-angle turn straight up to under my right armpit. Loretta wrote me that her and Tommy's boy T.L., who had open-heart surgery a few weeks ago, wants to compare his scar with mine; sorry, T.L., I think I'm winning this one in a walk.
I know that all this is going to get better and it's only a matter of time and rehabilitation; still, looking at the entire situation -- the sallow face, the frail body, the horribly-scarred stomach -- is still a bit shocking for me and I'm not entirely comfortable with it at the moment. That will come later, I know, and after the entire treatment regimen is over, I'll gain some permanent weight -- maybe not back to the 180s, hopefully, but I'll move out of the 150s. But that's down the line and right now, I just have to accept that it is what it is.
Anyway, that's the not-so-pretty update for today. Sorry to be so graphic, but this blog is all about the ups and downs of the entire journey, and while being home is a major "up," dealing with this incredible overnight bodily change is a huge "down" at the moment.
A few people have inquired about visiting and I would say that we should hold out until Friday and then see how I'm feeling. Right now I just need to rest, relax, and eat. Hopefully this weekend I'll have made enough progress to welcome a few visitors into the home; let's see how things go for the next 48 hours.
Okey doke -- it's almost time for the magic pain pill! Time to lie down in bed and let the rush of the pain medication sweep me into dreamland. As I get more energy in the next day, I expect to start responding to all the email messages you've all sent in the last two weeks, so you should be hearing from me directly in the next several days. Thanks again for all the great support...
And on that note, I will leave you with a very emotional moment I had today.
For the last two weeks I have been trapped in the hospital and in my own head, countless thoughts flowing through days and nights of a drug-induced and sleep-deprived groggy existence. Quite often during this period, I would find certain songs making their way into my brain and replaying over and over. One of these songs was a 30-second snippet of a new Coldplay tune, Viva La Vida, that plays on an over-exposed iTunes TV commercial. For two weeks, I often replayed that snippet in my head, even though I hadn't yet heard the full song.
Today a friend got me an iTunes gift certificate so I could download the latest Coldplay album, which was released yesterday. This morning, I downloaded the album, sat back, and clicked on the full track of the song Viva La Vida -- and as its pulsating, uplifting beat kicked in and I reflected on the entirety of my hospital stay, I began sobbing with tears of pain and joy and thankfulness and unbridled gratitude at the amazing group of family and friends I have around me, holding my hands and walking me down this road. My tears lasted the length of this amazingly beautiful song and when it was over, I felt a great sense of relief. I'm going to make it through this -- we all will.
Live the life, indeed.
With much love,
Tuesday, June 17, 2008
And, oh yeah -- I'm home.
All the tubes, wires and IVs are out of my body. There's just a couple bandages remaining, and those I can take off in a day or two. Now, I really need to wash my hair and get all the tape and bandage residue off both my arms -- I'll get to that later this evening. For the moment, I'm relaxing in relative peace and quiet. It's a bit of a system shock, to be honest, after 13 days of the unending hustle and bustle of the hospital.
It's great to be home. I'll write more tomorrow when I'm more settled. Until then, Viva La Vida, Forza Azzurri, and all that good stuff.
With much love,
Monday, June 16, 2008
It's now been a week since the surgery, and I've just had my best day yet. The pain is reasonably under control most of the time, my bodily functions appear to be returning to normal (although I'm having to pull a #1 all the time, which is completely normal, as my body is purging fluids that had built up through all the IV activity), and while I'm still tired, I think that's more a function of being in a hospital.
This morning, they started me on a solid diet. No chalupas just yet, but I've picked my way through a couple meals so far as I begin to build up an appetite.
And then, this afternoon, my docs made the rounds, considered my progress, and said that there's a good chance I can go home tomorrow.
Ultimately, I would guess that unless there's a deal-breaker (some sort of random fever or infection or other bodily issue that's askew), I'll be heading back up to the Oaktown tomorrow afternoon -- not a moment too soon.
I'm going to try to not get too excited for now, but if this is my last night down here (at least until chemo starts), then I'm all for it. I got a lot of sleep last night as I had no roommate for the evening, but they moved someone else in as my neighbor this afternoon and while he doesn't sound very vocal or in too much pain (so far), the comfort of my own room, own bed and an 8-hour night of uninterrupted sleep is at the fore of my mind.
So -- that's the latest. I'm gonna head back now, eat dinner and watch some TV. I'll let you know if tomorrow is indeed check-out day as soon as I know -- although given the speed at which some things move around here in terms of admissions and discharges, I could very well be at my home computer before getting the chance to update the blog.
I hope everyone is well and send your positive thoughts and prayers that tonight is indeed my last night in the hospital!
With much love,
Sunday, June 15, 2008
I just meandered down to the computers from my room. About an hour ago, they capped my IV (while still leaving it in my arm in order to dispense various medications), which means I don't have to drag the big IV module around with me everywhere. This means that I'm a lot more mobile now, which is good, because my bodily functions are waking back up and challenging me to get to certain places (like the restroom) within a certain amount of time. This is what we call the "not fun part of recovery."
Actually, pretty much the whole shebang falls under the "not fun part of recovery" header, but I'll get more into depth on that whole thing as more of my energy returns. In fact, if I find something that could be described as "the fun part of recovery," I'll let you know immediately. Don't hold your breath waiting for that, though.
Sadly, the fact that I no longer have my trusty IV module to dispense fluids and meds means that I have to bid adieu to my constant companion, Sister Mo. If my pain gets bad enough, they can still dispense the Good Sister directly into my IV (like they did during the first day of my hospitalization, pre-surgery), but the wonderful 'pain button' and the instant dispensation of medication is gone. I'll be on pills moving forward unless there is an acute attack of pain. Or unless I fake an acute attack of pain... not that I would do that.
Blessedly, things really aren't that bad. Yes, there is a constant dull pain in my stomach where the surgery was, but many times, I find myself feeling only a minimal amount of discomfort. Any physical activity exacerbates the issue, but I'll just have to deal with that moving forward as part of my physical rehab. Otherwise, my body is beginning to feel more and more 'normal' as it takes less and less effort to do the things we always take for granted (getting into and out of bed, moving around in bed, walking, sitting up, etc.). Still a long ways to go, but there's a marked difference between today and, say, Wednesday.
The schedule is light today and I'm going to spend most of the day resting. It's Father's Day and I want to send a Happy Father's Day wish to all the dads out there, especially my own pops, who is playing golf with my brother Nick today. I hope everyone is able to enjoy the balance of the weekend and get out into the nice weather; I had a couple visitors yesterday and they wheeled me out into the sun for a little while as we sat in a garden courtyard here and chatted for a spell. First time I've been outside since the surgery, and it felt great.
I have no timetable on when I will be released but based on the speed at which they keep removing various tubes and wires, and changing the aspects of my diet, I would guess Wednesday or even Tuesday might be about right. I could be way off on that, but pretty soon they won't have too much reason to keep me around here any longer. I'm really looking forward to getting home and sleeping a full night in my own bed without the constant distractions that happen in a hospital. My roommate, a fellow coming off a kidney transfer in his own battle against cancer, is checking out today; I wish him the very best, but his departure should provide some much-needed peace and quiet, as he's had some very loud physical and bodily struggles from his side of the curtain. Of course, this could be a double-edged sword and they could check someone else that's louder into the room right away -- I guess we'll see. Not gonna worry about it.
Okay, I'm headed back to bed for a while. Thanks again for all the messages and support; it's getting me through all the rough patches and pretty quickly here, this hospital visit will be a thing of the past. Enjoy the rest of the weekend and I'll check back atcha tomorrow, assuming I have the time...
With much love as always,
Friday, June 13, 2008
Dino here, writing from the cyber cafe around the corner from my block of rooms. It took me seven minutes to walk here when it would take a healthy person about 25 seconds, but I did so by myself, and that's a huge victory.
My dad is correct in his previous post -- most of the big painful tubes are now gone, and I'm left with one stomach filter type of thing, and an IV drip in my arm. On Tuesday (which seems like yesterday) I was a complete mess, tubes everywhere, but the nose breathing tube and the neck IV came out yesterday, and the chest tube and catheter were removed this morning. It was a mixture of both pain and relief to get those out. I'm much more mobile now, at the very least.
My two loving parents have been coming up each day and have noted the progress from Tuesday morning's horrific Hopalong Cassidy's Cavalcade O' Tubes to today's "Hey, he looks pretty close to normal, albeit 30 pounds lighter!" Although of course this afternoon my mom commented that part of my stomach had still retained a little chub, so maybe it wasn't all Kuato's doing.
I'm marking my progress incrementally and although there has been, and will still be, a lot of pain in the rehab process, each day is better than the last. My folks print out all the blog comments and I continue to get every text, voicemail, comment, email, etc. from my amazing group of support. Your continual positive push is keeping me ahead of schedule on my rehab, I truly believe that. The doctors are constantly reinforcing that I'm young and healthy, and I am definitely ahead of track on when tubes normally should be removed, food re-implemented, etc.
There have been several queries about visiting and as my dad noted, as much as I'd love to see each and every one of you, this weekend is probably going to be pretty light with family only. I expect that next week it will become easier for me to say yes to any requests to come down to Stanford to visit.
Dr. Jacobs came by with the path notes this evening. She said the tumor board has determined that my cancer is very likely a lipo-sarcoma, and the next phase of my treatment will be chemotherapy in a few weeks. Right now the remaining cancer is quite small but it's in several places and if Kuato taught us anything before we nailed his ass to the wall, it's that it can grow reasonably quickly. So, we'll do chemo for a few months, but I expect to crush this bad boy with the chemo treatment and if it comes back later, I'll crush it again. Whatever it takes. Most importantly, the vast bulk of cancer is now out of my body. That gives me an incredible feeling of survival and I will continue to survive.
Dad was right -- I spent much of the day sleeping. I'm finally able to sleep for long periods (although anyone that has ever spent time in a hospital will tell you that you can do pretty much anything in a hospital except sleep) and frankly, I'm exhausted. Probably will sleep more tomorrow and Sunday, but I'll begin with a liquid diet tomorrow and my already-requested Chalupa Protocol by next week (hopefully quicker than that, but it could be later, you never know).
That's enough of my blather. Thanks to all of you for faithfully following along and I (and dad) will continue to post updates when we can. Now get out there and enjoy the weekend sunshine. Summer is here for all of us!
With much love,
Nothing new on the biopsy results front - Dr. Jacobs had not come in by the time I left, so probably Monday. What's the rush anyway? He's finally starting to look normal. As we watched Tiger move through the front nine, I glanced over and he was out like a light, mouth wide open, having the best sleep of his life. I actually haven't seen him fully asleep in over two weeks - so, as we cruise into the weekend, life is good for all of us and we hope for you too.
Thursday, June 12, 2008
He's still communicating in one-word sentences, pretty much a whisper, and Mary and I have yet to totally understand his whacky sign language. Nonetheless, I was really beginning to feel like the indispensible Dad today when he interrupted my reading with a forced "Dah . . . Dah". I jumped from my seat, instantly available, ready to serve. As I pressed close to his mouth, it wasn't "D a a a a d" that he was whispering, it was . . . fan. He just wanted the fan turned more toward his feet. So much for dear old Dad coming to the rescue. You have to laugh.
We're hoping for some biopsy results tomorrow so Dr. Jacobs can determine the next course of action, probably chemo. And I asked Dino about visitors for this weekend. He said no. Even with his level of pain, he's still making the right calls. So stay tuned - our man is climbing the mountain again, and it won't be long.
Wednesday, June 11, 2008
Dr. Norton was in early this morning (no new news) just checking on his patient. I don't think Dean's quite ready to be pecking away at his own blog yet. Maybe by Friday, maybe the weekend. Mary printed the last several days worth of blogs and comments for him which he read and said, "Tell everyone thanks and I love 'em." So - another day in the slow evolution of recovery; some days are diamonds, some days are stone. BUT WE'RE GETTING THERE!
Tuesday, June 10, 2008
We caught his surgeon, Dr. Norton out in the hall and he expanded on what he had told us yesterday. They got all of the tumor, but there are a number of small spots that have metasasized - to what extent we don't know. The doctor reiterated that chemotherapy is the next order of business, but that won't begin until he's healed from the surgery. We do know that the surgeon also removed a small portion of his liver, his right adrenals and right kidney, and a portion of his right colon (though there is no need for a colostomy). Dr. Norton was actually upbeat about the limited reduction of these organs, saying that it would not materially affect his lifestyle.
Once Dino is readmitted to a regular hospital room, probably tomorrow, we should be hearing more from Dr. Jacobs (who will be supervising the chemotherapy treatment) as to the overall plan. Are we out of the woods yet? I think so, but I can't say for sure - mainly because we haven't gotten all the facts from all the players. As much as we want to seek out every answer from every doctor, that's not the format this story is following. Dino hasn't lost his positive posture, nor have we. But we're in a slightly different mode at the moment here in the ICU and this is more of a time of peace and comfort and - trust.
I must tell you something. Several weeks ago, when we first came to Stanford and were so thoroughly energized by their immediate "take charge" response, I had a bit of a unique revelation (and these things rarely come to me). We had been hearing from so many people who were focusing on Dino, so many prayer groups who had ramped up the troops, so much thought energy circling around my son. We were in a small side room massaging each other's emotions about how lucky we were to be here. Then Dr. Jacobs entered. As she began speaking, her words had such a soft and deep power that the room was for but a second filled with the light of all of Dino's friends.
I know that sounds a little "woo-woo", but I'm not a religious man (probably more like most of you, a little spiritually inclined). Fast forward to about 30 minutes ago, when sitting in the ICU waiting room, I thought I'd better get another blog out. I grabbed my notes folder and was about to head down several floors to the computer room when I heard singing. From directly around the corner. Girls voices almost sublimely harmonizing in a choir-like tune unfamiliar to me - echoing softly down the hall. They must have been with a family across from us in the room because I could see Mom and Dad's faces in a smile. Again, the light, almost like a tractor beam. We know you're here - your love's coming through loud and clear - and sweet.
Monday, June 9, 2008
I don't have a lot of specific info because we only had a short visit with the surgeon. By tomorrow morning, I assume that we will have talked to Dr. Charlotte Jacobs, the oncologist who is overseeing this whole thing. Suffice it to say, we all just exhaled - and life at this moment is very good. I promise that by tomorrow I'll have plenty of info for all of you wonderful friends. As soon as I hear it, I'll pass it on to you. The only specifics right now are that, while they got all of the tumor, there were several areas that will require chemo because they didn't want to radiate them. My sense is that Dino is out of rough water and on his way to a healthy recovery.
So - let's regroup tomorrow. Until then, we love each and every one of you.
Sunday, June 8, 2008
This will probably be my last blog post before surgery, so please keep all the prayers, love and positive thoughts focused in my direction tomorrow, and my dad will update the blog once I'm off the table and into Intensive Care.
My love to all of you. We're gonna get this thing gone!
Friday, June 6, 2008
Not much more to update but since I've been moved to a new room right down the hall from the computer room, and since I need the exercise, I thought I'd post a quick note.
Finding a comfortable position in which to sit/lie down is next to impossible but this, too, shall pass. Other than the huge lump in my belly -- which, to be fair, is causing a few problems -- everything else feels pretty good. I have a lot more energy this afternoon than I did during my update this morning and I know that while the next two-plus days are going to take a while, I'll get through it. My big Sister Mo is here to help see to that! :)
So, just a short note letting you know that I'm doing fine. For the umpteenth time, I am still reading my emails and texts, and getting all my phone messages. Your constant love and support is such a major aspect of this fight and I can't tell you enough how much it means to me. As always, just know that if I don't get back to you, it doesn't mean I didn't get the message. I'm gonna guess that it could be two-three weeks before I can even begin to touch base with everyone that has contacted me during this time. I've received like 20+ texts in the last 24 hours alone, which officially makes me the most popular person writing for this blog.
The weather's gonna be great, so enjoy the weekend! I'll try to write more when I have the chance, but please don't assume anything if you don't see any updates. Have fun in the sun, and let's get ready for Monday!
With much love as always,
Dino here. It's almost 6:30 AM and I've been up for an hour after actually getting 4-5 hours worth of sleep (more than in any of the past 3 nights).
Tough to type as I have an electrode sensor attached to my left index finger, but I'll deal for a moment.
I have read all your comments and got all your emails and calls and texts. Thanks again for being such an amazing support system. Kuato has three (interminably long) days left in his ugly and thankfully short existence and like you, I will be counting the hours (literally) until Monday morning.
I have actually gone the last 10 hours without a shot of morphine (or Sister Mo, as I prefer to call it) and did okay in the sleep department, although my stomach is pretty huge, distended and painful. Save the jokes about how "it's always been that way!" -- this is really a different story. I can't wait to get this cancer out of me... now it's just biding time and managing pain until Monday morning.
Rest assured I will get back on the morphine train shortly -- I just want to try to keep the urge for constant self-medication under control so that it doesn't get out of hand by Sunday night. Also, I'm finding that while it's really easy to 'space out' on the Sister Mo, it's hard for me to actually sleep when I'm riding that wave. Thus, no morphine over last night.
Anyway -- I know that some of you will be interested in calling and/or visiting over the weekend, and while I thank you for that, I should tell you that you should probably wait until the surgery is over before you come by. My stomach and breathing pain is such that I can't talk much and I spend most of my time conserving my energy, just trying to get comfortable. So, the visitors that I will have this weekend (mostly family) already know that I won't be real good company. My suggestion to the rest of y'alls is to hold off until Wednesday or later, when I am in recovery, before coming to visit if possible.
Well, it took a good bit of effort to walk down to this computer room, so I don't know whether or not I'll come back in the next 3 days to post another update. Please know that I am feeling everyone's thoughts and prayers loud and clear, we're in the hands of amazing experts here, and we're gonna beat this thing, no matter how long it takes.
My dad will continue to post updates as needed, so as always, this is the best place to come for all your Dino informational needs!
With much love to everyone,
Thursday, June 5, 2008
For most of the day, there was a mini-crowd gathered in Dino's room (his mom, Mary, my wife, MiMi, his brothers Nick and Amber and Chris and Virginia, his Aunt Anita, and a very special friend, Dr. Lou Zwerling who made the call that got Dino into Stanford). When our man, waiting all day on an empty stomach, was notified of the postponement, he was also cleared of any dietary restrictions and din-din quickly became the priority topic.
I expect he'll entertain visitors this weekend, but since they armed him with a morphine pump, callers and drop-ins can probably expect an affable stare, but certainly no tap dancing or hospital bed races. I found a computer room he can use - whether he'll be up for resuming his blog right now, I don't know. I'm just a messenger - we'd all rather have our leader speaking to us again.
And, as has been the case all along, your vibes are coming through loud and clear. Thankyou, thankyou, thankyou. For today . . .
Wednesday, June 4, 2008
We know the surgery is major (probably eight hours with prep) and because Stanford is so wonderfully thorough, they're trying to determine if they want a separate vascular team available (and said team may already be booked for another patient tomorrow). So, if not tomorrow, possibly Friday, but at least Dino is now safe and secure in the hospital that he (and all of us) wanted. And his pain is being effectively managed.
I'll keep this short, first because this is Dino's blog and I want the master back in front of his keyboard ASAP, and second because it's late and tomorrow may be a very long day. I'll keep you posted every step of the way (that is, as soon as I can get to a computer, probably in the evenings). The assistant to Dr. Norton (Dino's surgeon) says we can probably expect about a five-day stay so let's wrap it up for tonight by saying that Dino is, as usual, leading the charge. He's very up, very positive, is looking really well (except for the Kuato bulge) and feels the wonder of all your good thoughts coming his way. We all love you. Until tomorrow . . .
After spending far, FAR too long haggling with the insurance company and the medical group, I'm headed to the Stanford ER this morning to check myself in (with the assistance of my parents) so we can get surgery done as soon as possible.
I don't know how long I'll be down at Stanford but please direct all your positive prayer and energy in that direction. I'll let everyone know when I'm out of the hospital and back home (or at one of my parents' homes).
There have been many kind offers of help and I thank you all for that. Stanford care cannot be covered by my HMO insurance -- for some reason it took the medical group several business days to impart that bottom line to me -- but we'll figure out the expense situation later.
In the meantime, the only focus is to get tested, operated upon, and set up a treatment protocol with the experts at Stanford so I can get most of this cancer removed quickly and figure out how they can attack the remainder of it.
It's going to be complicated but with the experts running the show, and everyone else providing many different forms of support, I'm nothing short of 100% confident that I will beat this thing.
That's all for now. Next update will come when I'm out of surgery and sober enough to write. Until then, good health to all of you and keep the positive thoughts and prayers flowing my way!
With much love,
Tuesday, June 3, 2008
First things first: we're making progress on the insurance angle and the nurse advocate for us has given us a couple options to work with here. Apparently the main sticking point (and this sure would have been nice to know oh, say, a week ago or something) is that Alta Bates simply cannot refer people to Stanford. It's not in their network; they have no connection. There are no ties there. They simply would never have referred me there for any sort of second opinion. The nurse advocate, a very nice woman named Barbara, is working hard to find compromise solutions here and we expect more phone calls, referrals and movement to happen this morning, once she gets in the office around 9.
(I cannot believe how long this is taking me to type, but I'm coming off 3 MG of Xanax. More on that in a moment. I'm hitting backspace and correcting my spelling literally once every 2-3 seconds.)
She's basically suggested two options: one, let the Alta Bates docs make a self-assessment on whether they can handle my case and if they can't, they'll refer me to UCSF, which is a very fine cancer facility in its own right. I'm okay with that, so long as the UCSF referral, consultation and treatment don't take too long.
Two, we try mid-stream here to change my medical group from Alta Bates to one that DOES have ties with Stanford. Barbara will be calling this morning to discuss the viability of this. If it can happen, then I'll get a new GP with the new group who will refer me directly to Stanford, and we eliminate most of the rest of the hoops and get this thing going.
So, we'll find out this morning which direction we'll go.
In the meantime, my pain is growing. This morning I'm feeling okay at best, but that probably is more attributable to the huge dose of Xanax I took last night just to get to sleep. There are very few positions left on the couch that are comfortable for me. I fell asleep sitting up and eventually migrated to my side, but sleep was more drug-induced, and there is currently a shooting pain in my side if I breathe too deeply (as in, more than halfway in). My waist and back also hurt intermittently.
So like I said, it's not all roses and chocolates. I don't feel like my body in its entirety is breaking down or anything -- the functions all still feel pretty good -- but the tumor has either grown or shifted (or maybe both) and is definitely impacting my right lung now too. That doesn't mean that it's in the lung, but more likely has grown/shifted to the point where it's pressing up against it and causing breathing pain.
The vicodin really isn't working, Advil isn't working, Tylenol isn't working -- this is all internal pain coming from a moving of organs and the presence of a massive tumor that shouldn't be there. Not sure which pain medication actually WOULD have an effect here, but if you know of one, please suggest it.
Dad is on the phone with various people and is also discussing checking me into a hospital to manage the pain while we await the various insurance milestones. I don't know if that's going to happen or not; we'll see how things feel as the day progresses. If the pain subsides a bit, I can manage it from here at home until we're ready to test and go into surgery (assuming that happens within the span of a few days, and not weeks); if it continues along the lines of last night, then maybe I will have to go to the hospital or at the very least receive some stronger medication that will manage the pain and help me sleep.
This is not the most positive of blog postings but please realize that despite the recent travails -- which have been the worst so far but could still get a lot worse over the course of treatment -- my mindset has not wavered at all. I'm still 100% positive I'm going beat this thing and I know all of you are as well. It's harder to have faith when it's 2 AM and you're in considerable pain, but I know things could (and probably will) even get worse from here before they get better. It's all part of the journey and whatever I have to do to get better, I will. I implore all of you to continue to have faith in that.
And if last night was just a bad bump in the road, maybe I'll be sticking around the homestead longer than expected; we'll make any sort of short-term hospital or pain medication decisions later today after assessing how I'm feeling. Since this all started, the pain has been inconsistent and intermittent and maybe today will be much better than yesterday.
One last note: my dad now has my blog password and if the gears jump into sudden action such that testing and treatment begin immediately, or I end up in a hospital bed for a couple days to await treatment, he'll keep you posted. So, don't expect the news to dry up if I exit the communication loop for a few days, but I also encourage to continue the phone trees and email lists to get out the latest and necessary information so that all my extended family (which is what all of you are) can know the latest.
Let's see how today goes, what sort of news we get, and how my body feels, and if I'm up for it, I'll post again tonight with more. Again, my love and thanks to all of you for your various parts to play in this journey, and together we'll reach the end of this road and it will be a great thing. The road is going to have some potholes (like last night), but the ultimate destination is going to be worth it.
With much love,
Monday, June 2, 2008
Everybody's got to have a couple days at the end of the week to relax, maybe play some golf, or watch an inordinate amount of crap reality programming on TV, like Celebrity Circus Axe Men In Alaska Who Are Really Tough While Simultaneously Dancing And Forgetting The Lyrics To Songs About Dangerous Fishing Situations. Fine.
Friday, we had a nice visit with Kevin, the assistant to my GP, Dr. Stewart. Kevin has been handling all the paperwork on my case and routing it to the right people within the Alta Bates network, and he's spent untold hours dealing with the bureaucracy of my situation. He's very warm, patient and understanding, and has been a real trooper in all this -- I'm not quite sure how to express the extent of my gratitude but when this is all over, we'll figure something out.
Later on Friday afternoon, we found out that all the paperwork had finally made its way to the managing director of the Alta Bates Medical Group so that he or she could give a final answer regarding who is going to take on (and pay for) my treatment. I got a call from Barbara, the nurse advocate who is on my side in this battle, and she took me through the possibile outcomes.
First, she explained that I have a couple of strikes against me in our request for Stanford treatment:
- To begin with, Alta Bates is not connected to Stanford in any way, and had I asked for a second opinion within the network as per their proper protocol, they would have sent me to one of two other places; one was UCSF (a very fine cancer center in its own right), and I don't remember the other. So, in their eyes, Stanford should not even really be part of the equation in the first place.
- Perhaps more damaging, though, was that I circumvented their "second opinion process" by getting my own second opinion at Stanford, as arranged privately by Lou. This is a big no-no in the eyes of the medical group and if we know anything about medical insurance, it's that they will fight everything to the hilt if it means paying extra money. The fact that I didn't follow their rules is a big hindrance to my request.
If there's a "plus" side to my request, it's that I likely have a lipo-sarcoma of the stomach. I'll spare you the math, but the rarity of this disease means that the Alta Bates physicians see these exact types of cases a few times a year at most. That's being generous, I think. Stanford sees these types of cases all the time; there's probably very little about my own particular tumor that will be new to them.
I don't know if that's going to make a difference to the administrator (who is a practicing, expert oncologist) as he or she makes the decision on how to handle the treatment. There are pretty much three ways this could go:
- I could get a full thumbs-up for all treatment and testing at Stanford. I'm not expecting this to be the outcome.
- I could get a compromise, in which they agree to pay for consultation and surgery at Stanford, while all testing and radiation treatment would happen in-house at Alta Bates. Assuming Dr. Jacobs from Stanford is quarterbacking the team and Dr. Norton from Stanford is the surgeon, I'm totally fine with this. It's really immaterial where I get my hi-def CT scans -- I just need to get them NOW, not in another week or two. I also think there's a decent possibility that this may be the administrator's actual decision.
- I could get a thumbs-down on everything, wherein they tell me that they can handle every single aspect of the treatment, from testing to surgery to radiation.
If that last option is the Alta Bates decision, then we have a whole new set of hurdles to jump through while we escalate the case to the Blue Cross HMO level, but at the very least, I will begin testing as soon as humanly possible this week so that we can prep for the next (first!) stage of my treatment. No more dawdling, no more waiting for administrators, no more twiddling my thumbs while the bean-counters request documentation. It's all been delivered and collated, so it's time for them to act.
Last week was a week of relative inactivity; seeing friends, relaxing on the couch, reading, so on and so forth. And waiting, lots of waiting. Okay, fine, been there done that -- now we have to act. Kuato is not getting any smaller and in fact shifted at some point yesterday to reside right down just above my waist, and it's causing me more pain than it has before. I'm not immobile by any stretch, but the couch is the most comfortable place to be and that's only going to become more and more true until we get this ugly thing removed. At night, I've taken to falling asleep on the couch in an upright position, and then when I inevitably wake up at 2 or 3 or 4 AM, I drag my half-asleep body upstairs to my bed and spend the last few hours of the morning catching sleep in small bunches while laying on my side.
I'm gonna run off and get lunch now; we've made a couple phone calls this morning trying to track down the key players and no one's yet gotten back to us, so... the waiting continues, but I'm trying hard to not let it get me down.
I just got a voicemail from Kim indicating that some of you regular readers are concerned that my lack of posting over the weekend has indicated a turn for the worst, either in my mental or physical health. As always, I dearly appreciate the concern and the answer is no on both counts -- basically, I just didn't have the creative energy or inspiration to fire up the blog and throw up some thoughts. That will happen from time to time, so please don't read anything into the occasional lapses of inactivity. It might be a different story once treatment starts, but until then, I'll be here fairly regularly, keeping you up-to-date on the latest steps on my journey.
Finally, a few of you were a bit confused about Thursday's post -- if there are still any lingering questions about what I was talking about, please refer them to a Ms. Rosie Palm, care of The Sperm Bank of California, and she can clear things up for you.
Hoping to get some sort of answers today and if we get them, I'll let you know!
With much love,