After a three hour procedure late yesterday morning, the pain pump (we'll have to give it a name) has now taken up a good and proper residence just under the surface of Dino's left abdomen. We haven't seen it yet because it was still covered with gauze yesterday, but we expect that it might be felt as a slight bump similar to a pacemaker. It's about 3 1/2" in diameter and 3/4" thick with a catheter tube (also under the skin) that circles around to his back and into his spine. It represents the ultimate form of immediate pain relief.
Dr. Behravan, who performed the operation, says that Dino will finally be able to dispense with all the pills, patches, and IV's and rely solely on the pump for pain relief. I know you're exhaling with the same sigh of relief as us - his pain for the last seven weeks has been constant and unforgiving. I suspect he'll do a major blog on the issue of pain somewhere down the line.
It sort of feels to me like Phase One, if you want to call it that, is rapidly coming to a close. His surgery, recovery and pain management appear to be behind us now and so we move into Phase Two: chemo.
His oncologist, Dr. Cecchi has been pushing to start the chemo phase and, barring any other complications, I expect that will begin soon. There is a side issue, or complication if you will - his continuing bowel obstruction (I'm starting to sound like I'm the guest lecturer at a physician's seminar, this is not good, I gotta get back out into the sun). At any rate, the obstruction may be likely due to the spread of the tumor, but our preference is to start pounding away with chemo and address the bowel problem from some other avenue.
There, now that that's out of the way, let me say that today begins with goodness. All days do really. We just get sucked into dealing with the garbage first and forget about the more important things, like the love you're sending our way. As an example, from the many prayer groups pouring their waterfalls of wonderful thoughts over Dino, one put into their regimen yesterday a "prayer chain" wherein each member of the group took one specific hour out of their day to pray him through the pain pump installation. So, I'll say it again - today begins with goodness.
Dick Scoppettone
Dino's dad
Thursday, July 31, 2008
Monday, July 28, 2008
Edna
It was bound to happen sooner or later. Friday night a few of Dino's buddies dropped in, with the proviso to keep it short, fifteen minutes or so, but Dino responded favorably under the circumstances and the evening was bright and fun. This from a guy who, as we speak, has four bags of various meds feeding into a PICC line and a nasal drain from his nose to a collecting container. By Sunday he was basically paying for his indiscretions and so we've shifted into "No Visitors" mode for the rest of this week. But that's not the story here.
Saturday a few friends returned, among them Tracy and his wife Erica. Her mom was due to arrive shortly. During the preceding week, several of us had been discussing the issue of spirituality and were wondering if Dino had a spiritual adviser. His friends didn't think so and my only recollection was that Dean had been involved with a Christian group, Young Life some twenty years ago. Of late, we had not discussed the subject with Dino because he hadn't indicated that it was on his list of hot topics. That is, not until Edna arrived.
When Tracy introduced his mother-in-law, we had just stepped out of the room and down the hall for some knockout pizza that Chris and Virginia brought in. Edna's presence immediately filled the waiting area and my piece of pizza found its way to a side chair. She was a vivacious, dynamic lady, this Edna, and within moments, she had recruited everyone into a prayer circle inviting the Lord and his angels to take a whack at Dino's recent detour down Cancer Lane.
Normally, this would not be my thing, but then again I had never met Edna. Within moments, we were ready to dispatch last year's Super Bowl winners to the trash heap. She had met Dino several years ago, but assumed he would not remember her. We immediately towed her to his room - he immediately remembered her. (One could not not remember Edna.) Over the next twenty minutes, the room was filled with a wonderfulness that is best described as "You had to be there." She did a laying on of hands, this woman who said she wasn't a minister. Dino was filled with emotion (as were all of us) and he asked for a second round which, of course, she obliged. Then, as quick as she appeared, she was gone. I didn't get her number, didn't need to; I know she'll show up again.
Back to basic reporting. Today's Monday and only two days left until the install of the spinal pain pump. I won't tell you yet what we're going through with the insurance people just to pull this off. You'd only be pissed. I'm sure Dino will "elucidate" at some point in the future.
Regarding his pain level, the nights are the roughest. Last night he was up to a six on the pain scale. This may be a combination of both surgery pain and tumor pain. The sarcoma continues to grow (though by how much we don't know). That's why chemo MUST get underway as soon as his pain is consistently manageable. His condition is serious, and though these blogs don't spend a lot of time dealing with the downside, we're all aware of it. The cakewalk ended long ago - now we're into the tough stuff. Consequently, the "No Visitors" sign is posted this week - with Dino apologizing profusely, which of course, he doesn't need to do. By next weekend, we'll see how he's doing and take it from there. Naturally, you'll be the first to know, so everybody stay strong and keep the faith. Let's blast this sucker to smithereens! Thanks and all our love.
Dick Scoppettone
Dino's dad
Saturday a few friends returned, among them Tracy and his wife Erica. Her mom was due to arrive shortly. During the preceding week, several of us had been discussing the issue of spirituality and were wondering if Dino had a spiritual adviser. His friends didn't think so and my only recollection was that Dean had been involved with a Christian group, Young Life some twenty years ago. Of late, we had not discussed the subject with Dino because he hadn't indicated that it was on his list of hot topics. That is, not until Edna arrived.
When Tracy introduced his mother-in-law, we had just stepped out of the room and down the hall for some knockout pizza that Chris and Virginia brought in. Edna's presence immediately filled the waiting area and my piece of pizza found its way to a side chair. She was a vivacious, dynamic lady, this Edna, and within moments, she had recruited everyone into a prayer circle inviting the Lord and his angels to take a whack at Dino's recent detour down Cancer Lane.
Normally, this would not be my thing, but then again I had never met Edna. Within moments, we were ready to dispatch last year's Super Bowl winners to the trash heap. She had met Dino several years ago, but assumed he would not remember her. We immediately towed her to his room - he immediately remembered her. (One could not not remember Edna.) Over the next twenty minutes, the room was filled with a wonderfulness that is best described as "You had to be there." She did a laying on of hands, this woman who said she wasn't a minister. Dino was filled with emotion (as were all of us) and he asked for a second round which, of course, she obliged. Then, as quick as she appeared, she was gone. I didn't get her number, didn't need to; I know she'll show up again.
Back to basic reporting. Today's Monday and only two days left until the install of the spinal pain pump. I won't tell you yet what we're going through with the insurance people just to pull this off. You'd only be pissed. I'm sure Dino will "elucidate" at some point in the future.
Regarding his pain level, the nights are the roughest. Last night he was up to a six on the pain scale. This may be a combination of both surgery pain and tumor pain. The sarcoma continues to grow (though by how much we don't know). That's why chemo MUST get underway as soon as his pain is consistently manageable. His condition is serious, and though these blogs don't spend a lot of time dealing with the downside, we're all aware of it. The cakewalk ended long ago - now we're into the tough stuff. Consequently, the "No Visitors" sign is posted this week - with Dino apologizing profusely, which of course, he doesn't need to do. By next weekend, we'll see how he's doing and take it from there. Naturally, you'll be the first to know, so everybody stay strong and keep the faith. Let's blast this sucker to smithereens! Thanks and all our love.
Dick Scoppettone
Dino's dad
Friday, July 25, 2008
A Nice Little Pik-Me-Up
Dino got a Pik line put line put in today (actually PICC, but can't remember what it means). It's a type of intravenous line that allows for delivery of pain meds AND nutrients in the same dual tube. Much better than the old IV that keeps getting moved from arm to arm to arm. (I think Dino's gone thru six or seven arms worth of various needles).
He keeps saying "Cancer's not for sissy's" and there's some real stories that have occurred over the last few 3AM's - way more than I can write about, but when he gets his energy back, he'll talk it through wit ya. Mary and I are staying in his fifth floor "suite" at Alta Bates - big room with a great view which he has yet to really enjoy. But he will soon. The spinal pain pump got approved yesterday and gets put in next Wed. (I know, we don't want to wait either, but . . . please see title of last blog).
At any rate, you know I like to keep it short. This is Dino's Journey and he's got lots to tell so stay tuned. For now, I'll just borrow the words of an old rocker, "It's been a long, strange trip."
Dick Scoppettone
Dino's dad
He keeps saying "Cancer's not for sissy's" and there's some real stories that have occurred over the last few 3AM's - way more than I can write about, but when he gets his energy back, he'll talk it through wit ya. Mary and I are staying in his fifth floor "suite" at Alta Bates - big room with a great view which he has yet to really enjoy. But he will soon. The spinal pain pump got approved yesterday and gets put in next Wed. (I know, we don't want to wait either, but . . . please see title of last blog).
At any rate, you know I like to keep it short. This is Dino's Journey and he's got lots to tell so stay tuned. For now, I'll just borrow the words of an old rocker, "It's been a long, strange trip."
Dick Scoppettone
Dino's dad
Monday, July 21, 2008
Hurry Up and Wait
Dino had another bout with a bowel obstruction and got readmitted to Alta Bates on Saturday. He'd been attempting to stay hydrated as well as keeping up with the prune juice/stool softener regimen, but it just wasn't enough to stay ahead of the constipation effect from the Dilaudid pills. Actually, we're all somewhat comforted that he's back in the hospital because we know he's getting immediate attention and that all the bases are covered.
Speaking of which, there's a couple of future bases we're seeking to get covered ASAP. First, the installation of a spinal pump which will circumvent the need for all the pill taking and which doesn't have the nasty constipation side effects. Today will be Day #6 in the wait for Blue Cross to approve this. We're not anticipating a problem with the authorization - it's just that they're obviously not on the same time frame we are.
Second, we're looking to start Dino's first round of chemo also ASAP because there is some evidence that the tumor may be growing back. Though it's not crystal clear yet (they can't see it on the latest CT scan), a combination of factors seems to be pointing in that direction. If it is growing back, we don't know at what speed or how large, but everyone agrees that this type of tumor responds well to chemo and so it's time to get on with the program. Dr. Cecchi, the Alta Bates oncologist is unavailable until Thurs. so we're hoping that Thurs. may be the start date.
As for Dino's spirits, he's awake and conversing and very much wanting to get this thing going as he has been all along. Those of you that have experienced similar health issues know that sooner or later the "roller-coaster effect" can begin to appear (one day up, next day down, hurry up and wait, etc.). We're kind of in the middle of that right now, but once we get the first round of chemo started, things hopefully will become a little more predictable (and comfortable). That's not to say that the chemo doesn't carry with it its own associated problems, but at least we'll know that a program is finally underway to start knocking back that tumor.
Dino loves hearing your comments so keep 'em coming. Don't know when he'll start doing his own blogs again (he asked me to bring his laptop to the hospital today and I'm doing so, but don't know if there's a WiFi setup there). If he doesn't jump back on the blog, I'll keep you posted on the progress of the pain pump install and chemo startup. As always, we love you and thanks for being there.
Dick Scoppettone
Dino's dad
Speaking of which, there's a couple of future bases we're seeking to get covered ASAP. First, the installation of a spinal pump which will circumvent the need for all the pill taking and which doesn't have the nasty constipation side effects. Today will be Day #6 in the wait for Blue Cross to approve this. We're not anticipating a problem with the authorization - it's just that they're obviously not on the same time frame we are.
Second, we're looking to start Dino's first round of chemo also ASAP because there is some evidence that the tumor may be growing back. Though it's not crystal clear yet (they can't see it on the latest CT scan), a combination of factors seems to be pointing in that direction. If it is growing back, we don't know at what speed or how large, but everyone agrees that this type of tumor responds well to chemo and so it's time to get on with the program. Dr. Cecchi, the Alta Bates oncologist is unavailable until Thurs. so we're hoping that Thurs. may be the start date.
As for Dino's spirits, he's awake and conversing and very much wanting to get this thing going as he has been all along. Those of you that have experienced similar health issues know that sooner or later the "roller-coaster effect" can begin to appear (one day up, next day down, hurry up and wait, etc.). We're kind of in the middle of that right now, but once we get the first round of chemo started, things hopefully will become a little more predictable (and comfortable). That's not to say that the chemo doesn't carry with it its own associated problems, but at least we'll know that a program is finally underway to start knocking back that tumor.
Dino loves hearing your comments so keep 'em coming. Don't know when he'll start doing his own blogs again (he asked me to bring his laptop to the hospital today and I'm doing so, but don't know if there's a WiFi setup there). If he doesn't jump back on the blog, I'll keep you posted on the progress of the pain pump install and chemo startup. As always, we love you and thanks for being there.
Dick Scoppettone
Dino's dad
Wednesday, July 16, 2008
Major Payne
"Ain't nothing I can do, but... ramble on."
-Led Zeppelin
Hi folks,
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,
Dino
-Led Zeppelin
Hi folks,
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,
Dino
Sunday, July 13, 2008
Sunday Night...
...and I'm back home. Surgery scar pain is still the same (fluxes from okay to pretty bad) but the bowel issue is gone, which is why I went there in the first place. Just wanted to let you all know, and I'll have a longer update tomorrow once I get a handle on the pain and I get some much-needed rest. As always, thanks for your love and support.
With much love,
Dino
With much love,
Dino
Friday, July 11, 2008
Back to the hospital again?
'fraid so. Dino's mom brought him to Oakland's Alta Bates Emergency this morning about 3AM with extreme bowel pain from constipation. That's sounds kinda graphic, but there's really no other way to say it. Dino had bumped up his pain meds as per the doctor's orders, but one of the side effects of high doses of Dilaudid pills is constipation. So it's an endless tradeoff - trying to hold the incision pain to a 3 or 4 without going through the roof on pain pills. He asked if I'd do a quick blog to bring everyone up to speed, so I think I'm gonna do a "Just the facts, Ma'am" thing for tonight.
I got there around 11 this morning and he was still in emergency - waiting for admission to a hospital room. When he finally got "officially" checked in around 1:30 to Room 2386 and cranked up the hospital bed to "Dino position", boom . . . off to the bathroom and a long-awaited major sendoff to all the Milk of Magnesia he's ingested over the last several days. What a relief!
The doctors had done an earlier CT scan and were guestimating one of two scenarious: either fluid accumulating in his stomach or possibly tumor growth in his bowel. So they started him on a nasal drain which they eventually removed around six this evening. Still no clear diagnosis, though when I spoke to him awhile ago, he sounded OK (probably because the nurse was about to install the "Sister Mo" pump like he had at Stanford). He said the bowel pain was gone, but the incision pain was still a bit more than he wanted to tolerate. This incision recovery seems to be taking forever.
Mary and I had our first formal meeting with Dino's Alta Bates oncologist yesterday. He hasn't decided on a chemo regimen yet because he wants Dino to be more recovered from the surgery. He said the chemo treatments for this type of sarcoma are pretty rough and Dino needs to get healthy before he begins the program.
So that's the lowdown for tonight. I realize, as all of us go through the changes resulting from Dino's "life-changing" experiences, it's really easy to move in and out of "hospital talk". It's easy to lose focus and forget that the rest of the world is still going round and round out there. For Dino, his focus is the tightest - still pointed unflinchingly at beating this thing - and the same applies to us, even more so. But, nonetheless when he told me this afternoon that he wasn't depressed, I know that's one emotion that will visit him sooner or later. So keep sending your love - he needs it, we all need it.
Dick Scoppettone
Dino's dad
I got there around 11 this morning and he was still in emergency - waiting for admission to a hospital room. When he finally got "officially" checked in around 1:30 to Room 2386 and cranked up the hospital bed to "Dino position", boom . . . off to the bathroom and a long-awaited major sendoff to all the Milk of Magnesia he's ingested over the last several days. What a relief!
The doctors had done an earlier CT scan and were guestimating one of two scenarious: either fluid accumulating in his stomach or possibly tumor growth in his bowel. So they started him on a nasal drain which they eventually removed around six this evening. Still no clear diagnosis, though when I spoke to him awhile ago, he sounded OK (probably because the nurse was about to install the "Sister Mo" pump like he had at Stanford). He said the bowel pain was gone, but the incision pain was still a bit more than he wanted to tolerate. This incision recovery seems to be taking forever.
Mary and I had our first formal meeting with Dino's Alta Bates oncologist yesterday. He hasn't decided on a chemo regimen yet because he wants Dino to be more recovered from the surgery. He said the chemo treatments for this type of sarcoma are pretty rough and Dino needs to get healthy before he begins the program.
So that's the lowdown for tonight. I realize, as all of us go through the changes resulting from Dino's "life-changing" experiences, it's really easy to move in and out of "hospital talk". It's easy to lose focus and forget that the rest of the world is still going round and round out there. For Dino, his focus is the tightest - still pointed unflinchingly at beating this thing - and the same applies to us, even more so. But, nonetheless when he told me this afternoon that he wasn't depressed, I know that's one emotion that will visit him sooner or later. So keep sending your love - he needs it, we all need it.
Dick Scoppettone
Dino's dad
Subscribe to:
Posts (Atom)