"Ain't nothing I can do, but... ramble on."
As you probably have noticed, my blog entries have slowed quite a bit. In the past, this could easily have been chalked up to my normal laziness, and the fact that quite often I will begin a project with much enthusiasm, only to lose interest halfway through and move on to other endeavors. Many of you that have worked with me or have known me a long time can probably rattle off quite a few examples of conversations with me that approximate the following:
You: "What have you been up to these days?"
Me: "Oh, I'm doing Project X, it's gonna be awesome! Just you wait and see, darn tootin'!"
Two months later...
You: "Hey, how's Project X coming along?"
Me: "Ohhhhhh... uhhhhh... sort of on the back burner at the moment... I'm working on Project Y right now, I think it's going to be really cool. Really boss, I'm tellin' ya."
And Project Y begets Project Z, which begets Project ZZ, which begets Project ZZZ, which begets me taking a long nap. Eventually, nothing gets done on anything.
Well, that's not the case here, which is both good and bad. The good part is that I am still very excited about writing this blog and keeping everyone updated on my journey. I know that I have a lot of friends and family that check in several times a week and it's really gratifying to me to know that so many people are keeping tabs on me and (hopefully) enjoying my writing. And I know that once my journey is mostly through, I will be able to take this blog and use it to help others that are going to follow a similar path.
The flipside is that as of late, I just haven't had the energy to write. I've had tons of time, but energy is a whole other story.
Actually, maybe "energy" is not quite the right word... it's hard to describe what's keeping me from writing more often, but if you had to sum it up in one word, it would probably be "pain."
I'm a little over five weeks post-surgery and unfortunately, I am still suffering a lot of abdominal pain where my surgical scars are. This pain is not intermittent, it does not go away for any long periods of time, and it makes my life quite challenging in a variety of ways. I'm taking a variety of medications to try to control the pain and while some of them have had an effect, nothing has served to eradicate the constant discomfort that envelops the right side of my torso, both front and back.
Those that have seen my scar can easily understand why this pain is occurring -- all told, the incision is at least 10 inches long, maybe even a foot long. (Look for the new "Dino's Scar" bacon and turkey sub at Quizno's, slated to hit the menu next month. It looks funky but trust me, it's tasty.) To complicate matters, I had a kidney removed, I lost my right adrenal gland, and I had small parts of my liver and my bowel taken out as well. Just about every medical professional I've spoken to has told me that such prolonged pain is not uncommon after a surgical procedure like the one I had, which was a major surgery in every sense of the term.
So for the past few weeks, life has pretty much been a waiting game, as each day I struggle to find comfortable positions in which to sit or lie down (I can't lie flat, so I have a boatload of pillows propping me up). If I'm lucky and the medications are working and I find a good spot on the bed, sometimes I can go for an hour or two with very minimal discomfort, and life ain't so bad. Otherwise, well, let's just say I spend a whole lot of time adjusting pillows, getting up and walking around, switching chairs for two minutes only to move back to the original chair I was sitting on, etc.
I know that this pain will pass; I just don't know when, but it has to be soon, because I need to begin chemotherapy before the month ends. Yesterday, Dad and I met with a pain specialist in San Leandro who prescribed another couple of specific pain meds for me and is scheduling a procedure to actually put an internal pump into my stomach that will release special pain medication directly to the affected areas. It's an outpatient procedure and it should really make life a lot easier once it's installed, which should be early next week. With this pump, the doctor can control which meds are used and can vary the dosage depending on my level of pain, but most importantly, the pump targets the stomach abdomen directly and doesn't waste time on the rest of my body, meaning that it can use far less medicine to accomplish the same exact results we're getting now.
Indeed, medicine was a big part of last week's problem. I had been warned by several people -- both friends and physicians -- that a major side effect of taking dilaudid and other opiate-based medications would be constipation, and that I would have to take steps to offset those effects. To do so, I was taking an over-the-counter stool softener that seemed to work okay. However, towards the end of last week, as my pain started to grow and my body's tolerance for dilaudid began to increase -- forcing me to take more of the drug to achieve the same level of relief -- I didn't increase my intake of the "antidote" as well. By Wednesday of last week I was slamming dilaudid like never before, but as the day crept along, I began to notice a new pain.
I would assume most of you reading out there have suffered constipation at one point or another. I don't need to get into the details other than to say that your typical garden-variety constipation really sucks. Well, this drug-induced constipation sucked times ten. By Thursday, in addition to the normal abdominal pain, I was getting fierce shooting pain on the other side of my body, and all my best efforts to relieve myself were for naught. I had really jacked up the dosage of stool softener and my parents brought in the dreaded milk of magnesia, but neither seemed to have an effect.
So, Friday morning at 3 AM, after enduring a major bout of piercing pain, I had Mom drive me to the emergency room. My hope was that they would give me something to clear me out and then just let me go home, but of course, they admitted me as a patient, and I spent two more nights in the hospital. The constipation situation resolved itself on Friday afternoon when, just after checking into my room, I bolted to the restroom and gave birth for the second time in five weeks. Check the Guinness Book next year; I'll certainly be listed as the only male to give birth not once but twice -- first to Kuato, and then to whatever concoction of stuff it was that was jamming up my bowels for three days.
(By the way, ladies, I'm going to assume that giving birth to a child is even more laborious and painful than my Friday experience, and for that, you have my eternal respect. If my future wife is out there reading this, just know that once we have our first child, I will take you to a fine meal at BK or Wendy's to show my appreciation for the ordeal you will have gone through. Guys simply have no way of understanding what that sort of pain is like, but I think I got a slight glimpse after Friday's fiasco.)
Hospital was more of the same -- poking, prodding, no sleep, crappy TV, continual discomfort -- and I'll share all my hospital thoughts in a future post. Just know that I lobbied hard to be released on Sunday and so they let me go after giving me more prescriptions and yet another protocol to follow to try to control my abdominal pain. I now have over 20 bottles of pills strewn about my bathroom counter, some of which I use on a daily basis, some of which were prescribed several weeks ago and are now "obsolete" in terms of what I'm supposed to be taking in order to control the pain in my gut.
So, here I am on Wednesday morning. Dad just left, Mom is coming up in a couple hours to take his place and stay for a few days, and I'm actually not feeling too badly. I didn't sleep well, but I ran a hot bath at 5 AM and sat in it for a while, and that seemed to relax my body enough so that when I got back into bed, I was reasonably comfortable. Maybe I've found another outlet to provide at least some short-term relief... we'll see.
I'm slowly and cautiously getting back to eating solid food and I'm making sure to take all the anti-constipation meds in copious doses. So far there have been no problems, and I need it to stay that way. My initial guess after surgery was that I'd begin chemo before July was over, but I thought I'd be much further along in my rehab by July 16th than I currently am at the moment. I haven't really gained any weight back, and two different stays in the hospital have stunted the amount of rest, energy and strength I've been able to accumulate -- things that I will need in large quantities in order to endure the chemotherapy protocol.
As far as chemo goes, we're going to have to start it soon. Dr. Jacobs at Stanford took a look at my latest CAT scan from this last weekend at the hospital and expressed a bit of concern that the small sarcoma seedlings that were left over from the operation are beginning to grow. This is of no surprise at all, but it does mean that I'm going to have to begin chemo treatment in short order; I'm not going to be able to wait until September, for instance, or wait until the scar is completely healed and I've gained 15 pounds and am ambling around pain-free. No, it's not a best-case scenario, but like everything else about this journey, I'll just have to suck it up and get it done. I have all confidence that the chemo regimen, as much as it will suck, will crush the remaining cancer, and if I have to endure the regimen in sub-optimal shape, well, so be it. No one ever said this was gonna be easy.
I continue to be inundated with gifts, requests for visits, emails, cards, and everything else. You guys have no idea what this means to me; it really is one of the things that keeps me going during the tough times, the long nights when the pain is insufferable and the clock moves at about an hour per minute. My support group is everything to me and though I sound like a broken record, I want to say again: thank you for those prayers, positive thoughts, gifts and cards, and everything else. I'm behind on my personal correspondence and until I get the pain under control consistently (let's hope this internal pump next week will have a major impact), some of you may not hear back from me, but trust that your thoughts are always heard and they keep my spirits in the stratosphere, even when it feels like this situation will never end.
The thing is, I know it will end, and I know there is an amazing life waiting for me on the other side of this, and even though that point might be many months away, the knowledge that I will survive, combined with the power of my support group, provides me with a strength that I'll never be able to quantify. My parents wonder why I don't seem to get depressed or why I don't spend a lot of time crying, and the fact is, I just don't feel that way. I'm sure I will at some point, but overall, I feel like this is just the path that has been laid before me, and I must follow it, and it will lead to good things for me and for everyone else that is following me and carrying me on their shoulders through the rough patches. It might suck at times, but we'll all be stronger for it in the end.
At the same time, while I don't ever really get depressed per se, I have to say that the pain typically leaves me wanting to just be alone. When the pain gets to be too bad, I can't really talk because even talking for 20 seconds starts to constrict my abdomen area and causes further discomfort. Even if I could talk, however, the fact is that these days, I'm in pain often enough that most of the time, I really prefer to just lie in bed and read or watch TV by myself.
A lot of you have inquired about visiting and although I feel badly about it, I've had to tell just about everyone to hold off for now. Please understand that it's nothing personal; it's simply that until I get to the point where I'm comfortable enough to handle visitors for any amount of time, I just need space to rest and heal. My parents can attest to the fact that even when it's just me and them sitting in the living room watching TV or something, I have very little to say and most of the time I just bag out and head to my room to lie down anyway. So, even for those of you that say "we don't even have to talk, we can just watch TV together or something" -- which is a kind sentiment that I've heard from many friends -- please understand that it's more just a matter of me wanting to be alone until I'm healed enough and pain-free enough to start being more social. As George Costanza would say: "It's not you, it's me!" Well, even though he was full of crap, in this case, it's true. Really. Honestly.
So, that's my ramble for Wednesday morning. I expect to spend a lot more time in bed today, reading on my Kindle (man, I love that thing) and catching up on the sleep I didn't get last night. I'll try to jump back tomorrow to start catching up on other thoughts I've had from the past couple weeks of near-silence you've seen on this blog. Reminder: my friend Andi is still working on donations for her marathon run, so check out http://doitfordino.blogspot.com/ if you haven't already.
And finally, a shout-out to my wonderful brother Nick, who turns 35 today. Happy birthday, kid. Wish I could be there to spend the day with you, but I'll talk to ya on the phone. Enjoy the day and don't worry about the fact that you're getting old -- it happens to all of us.
As for that "enjoy the day" thing, that goes for the rest of you too. Thanks for reading and I'll be back soon.
With much love,