This will be short and sweet, considering we were up at 4am this morning to get to the hospital on time, and it's now after 10pm and I am still here, and for one thing, I'm too old for this crap and for another thing, what is it about sitting in a hospital waiting room that is so exhausting? Must have been all that strenous walking back and forth from the vending machines while Blaine was in surgery --- I'm a nervous eater, you know.
It went well, though ---- lasted about four hours and they were able to accomplish exactly what they hoped. The area on his leg where they took the skin graft is sore, and of course his face hurts. And let's be honest, looks funny because they had to hyper-stretch the repair area to account for potential tissue shrinkage (NOT the same kind of shrinkage they discussed on Seinfeld...)
He looks like Mick Jagger. Mick Jagger with four cans of Skoal tucked in his upper lip. Mick Jagger with four cans of Skoal tucked in his upper lip, which just received collagen injections. But hey! He's got teeth attached to this temporary prosthetic device, which is sort of cool. I totally wasn't expecting that, and would have been pleasantly surprise were I not so shocked by his Mick Jagger on steroids lips.
I'm going back to the hotel now to get some sleep. I'm a little scared to kiss him goodbye, though, for fear his face might explode.
Showing posts with label Blaine Cancer. Show all posts
Showing posts with label Blaine Cancer. Show all posts
Wednesday, August 22, 2007
Wednesday, March 07, 2007
On a Tangent. And a Soapbox.
I feel the need to clarify, given my constant ranting and ravings, that yes, the bureaucracy of Tricare sucks sometimes. It sucks big, green, giant, don …. Well, you get my drift. But, try to find any health care monolith, which provides medical care and coverage to millions of people, that isn’t a maddening pile of red tape at times, and you know …. I don’t think it exists. And considering all we’ve been through, and knowing what we know now, with hindsight being 20/20, if we could rewind the clock, and turn back time, with the chance for a do-over …. Well, we probably wouldn’t do anything any differently. Given our personal situation, especially.
Yes, it would most likely have made things easier if we could have transferred to a military base with a comprehensive cancer center, instead of Blaine getting some of his treatments at the Air Force Base here, and some three hours away at Ft. Gordon Army Hospital, and flying numerous times clear across the country to Seattle. It’s been a complete pain in the ass, and one of our biggest sources of frustration, for him to have dozens of doctors scattered all over the country. But it worked out this way for two reasons. One, we REQUESTED to stay here so Kendrie could finish her cancer treatment, and begin her follow up care, at Scottish Rite in Atlanta. Five years in the same location? That is unheard of in the military, yet we've done it. Granted, Blaine’s care got put on the back burner when she was diagnosed six months after him, and some things possibly slipped through the cracks. That’s partly our fault, too, as we were paying so much attention to her treatment, and perhaps not as much to his. But even now, we wouldn’t trade the quality of care she received for anything. Blaine’s care had to be farmed out, if we wanted the best people for the job to do it, given that we weren’t willing to move. Not that moving was ever offered to us as a suggestion, but even if it had been, we would have said no.
And two, when this whole thing started, and throughout the entire process, it’s been a series of complications and setbacks that no-one, short of God Himself, could have foreseen. I can’t tell you how many times we’ve heard, “Well, *that* should take care of it!” …. Only for a procedure to be unsuccessful, or an infection to set in, or a complication to develop, or for the radiation to kick his ass, or for the cancer to return. Nobody could have predicted that all these things would happen and that Blaine’s health would turn into a comedy of no-fault errors ….. that our lives, for all intents and purposes, would become a living, breathing example of “shit magnet” at its finest. No-one was subversively hanging out in the kitchen, making one crap sandwich after another to serve our family. Things just wound up being more complicated and drawn-out than we ever expected. So sure, its easy to look back now, with the advantage and wisdom of experience, and know that being stationed somewhere where he could have received comprehensive care would most likely have been helpful. But there was no way to know, going through it, that any of this would have been more complex than the doctors anticipated in the beginning. So even if we *could* have moved, we probably wouldn’t have, because we’ve always thought, and hoped, that we were seeing light at the end of the tunnel. It’s just that in this particular case, that light has usually wound up being an oncoming train, headed right for us.
I don’t think Blaine has gotten bad care. I do think it’s inevitable that given all he’s gone through, over the course of the past four years, that we would encounter a glitch or two. Or three or four or seven hundred. It’s frustrating, and it’s annoying, and yes, we second-guess ourselves and wonder “what the hell?” and beat our heads against the wall with alarming regularity. In fact, I'm pretty sure that his doctors have been frustrated by his case, as well. Blaine is a living, breathing reminder that sometimes, even their best attempts can't heal or cure a person. But the care he has received has been good overall, and at times, exemplary. Nothing that has gone wrong with him is anyone’s fault; none of his providers have been malicious or harmful or negligent. There have definitely been situations where they’ve caught things and preemptively helped him. The Air Force dentist who found the tumor; the Army surgeons who removed it and saved his eye; the Army orthopedists who saved his leg when he got the MRSA staph infection after his first major surgery; and all the doctors and specialists along the way, who have helped, or tried to help, deal with the complications and obstacles that have cropped up. I just get frustrated because I want him well. I want him back the way he was before he was diagnosed, and I worry that’s never going to happen. And, like every family with a cancer patient knows, it’s aggravating that there is no one to BLAME for the situation, so I sometimes get irrationally annoyed with the people attached to the situation, ie, the medical staff. I can’t yell at him although I do sometimes but only when he really, really deserves it so who else can I gripe about?
In light of the Walter Reed situation, and the fact several of you have made correlations in the comments section, I feel compelled to state that although we have been perturbed and stymied over the years, we have never felt neglected. I think the military doctors (civilian, as well) that have treated Blaine have, for the most part, been competent and kind and capable. Sure, there has been an asshole or two, sprinkled here and there, but I think that’s to be expected in any career field. If I’ve given anyone reason to think, what with my bitching and moaning and griping and all, that he hasn’t been treated well by the military, I’m sorry. That wasn’t my intention at all. I have no doubt just the opposite is true, and had he been employed by a civilian employer, that we would have been unemployed and in bankruptcy by now. It’s just frustrating that with regards to his medical situation, not one damn thing seems to go as planned.
And if I could get up on my medium-sized soap box, regarding Walter Reed and the military in general, I have just one word to sum up the entire situation: Overburdened. Blaine’s never been treated at Walter Reed; we’ve never been there; I have no idea what has happened there. But you, (and I don’t mean YOU-you, but “you” in general) can only slash the military budget so much, so many times, and still expect top-quality services across the board. When people say they are tired of seeing money spent on tanks and bombs and guns, and the war in Iraq needs to end, they need to understand that cutting defense spending doesn’t only affect the war on terror. It also means less military personnel overall everywhere, which means less doctors and less nurses treating more patients; it means military hospitals don’t always have the funding for equipment and supplies and medications; it means benefits have to be cut, both for active-duty and veterans, it means less repair work on military bases and military housing; it means more and more Department of Defense schools being shut down; it means fewer and fewer active-duty members, who still have to do accomplish the same amount of work that was done when the military was 30 percent larger. Most appalling to me, it means allowing an environment where airmen with families are paid so little that they are eligible for food stamps. And that’s just wrong.
OK, off the soapbox now.
Actually, the authorization expiring makes me realize it’s been exactly four years since Blaine was diagnosed. Referrals are good for one year, which is why it’s time to renew his. Four years. March of 2003. Was that a long time ago, or what? And it reminds me that I don’t think I’ve ever told the story of when he was diagnosed, and how I found out. I’ll share it with you sometime, because it’s actually a little bit funny.
In the meantime, thanks for giving me the space to vent here about what is going on with him, but please know that’s all it is; venting. Me, letting off a little steam and fear and anxiety, the best way I know how. With insults and four-letter words.
Lots and lots of four-letter words.
They’re the best kind, after all.
Yes, it would most likely have made things easier if we could have transferred to a military base with a comprehensive cancer center, instead of Blaine getting some of his treatments at the Air Force Base here, and some three hours away at Ft. Gordon Army Hospital, and flying numerous times clear across the country to Seattle. It’s been a complete pain in the ass, and one of our biggest sources of frustration, for him to have dozens of doctors scattered all over the country. But it worked out this way for two reasons. One, we REQUESTED to stay here so Kendrie could finish her cancer treatment, and begin her follow up care, at Scottish Rite in Atlanta. Five years in the same location? That is unheard of in the military, yet we've done it. Granted, Blaine’s care got put on the back burner when she was diagnosed six months after him, and some things possibly slipped through the cracks. That’s partly our fault, too, as we were paying so much attention to her treatment, and perhaps not as much to his. But even now, we wouldn’t trade the quality of care she received for anything. Blaine’s care had to be farmed out, if we wanted the best people for the job to do it, given that we weren’t willing to move. Not that moving was ever offered to us as a suggestion, but even if it had been, we would have said no.
And two, when this whole thing started, and throughout the entire process, it’s been a series of complications and setbacks that no-one, short of God Himself, could have foreseen. I can’t tell you how many times we’ve heard, “Well, *that* should take care of it!” …. Only for a procedure to be unsuccessful, or an infection to set in, or a complication to develop, or for the radiation to kick his ass, or for the cancer to return. Nobody could have predicted that all these things would happen and that Blaine’s health would turn into a comedy of no-fault errors ….. that our lives, for all intents and purposes, would become a living, breathing example of “shit magnet” at its finest. No-one was subversively hanging out in the kitchen, making one crap sandwich after another to serve our family. Things just wound up being more complicated and drawn-out than we ever expected. So sure, its easy to look back now, with the advantage and wisdom of experience, and know that being stationed somewhere where he could have received comprehensive care would most likely have been helpful. But there was no way to know, going through it, that any of this would have been more complex than the doctors anticipated in the beginning. So even if we *could* have moved, we probably wouldn’t have, because we’ve always thought, and hoped, that we were seeing light at the end of the tunnel. It’s just that in this particular case, that light has usually wound up being an oncoming train, headed right for us.
I don’t think Blaine has gotten bad care. I do think it’s inevitable that given all he’s gone through, over the course of the past four years, that we would encounter a glitch or two. Or three or four or seven hundred. It’s frustrating, and it’s annoying, and yes, we second-guess ourselves and wonder “what the hell?” and beat our heads against the wall with alarming regularity. In fact, I'm pretty sure that his doctors have been frustrated by his case, as well. Blaine is a living, breathing reminder that sometimes, even their best attempts can't heal or cure a person. But the care he has received has been good overall, and at times, exemplary. Nothing that has gone wrong with him is anyone’s fault; none of his providers have been malicious or harmful or negligent. There have definitely been situations where they’ve caught things and preemptively helped him. The Air Force dentist who found the tumor; the Army surgeons who removed it and saved his eye; the Army orthopedists who saved his leg when he got the MRSA staph infection after his first major surgery; and all the doctors and specialists along the way, who have helped, or tried to help, deal with the complications and obstacles that have cropped up. I just get frustrated because I want him well. I want him back the way he was before he was diagnosed, and I worry that’s never going to happen. And, like every family with a cancer patient knows, it’s aggravating that there is no one to BLAME for the situation, so I sometimes get irrationally annoyed with the people attached to the situation, ie, the medical staff. I can’t yell at him although I do sometimes but only when he really, really deserves it so who else can I gripe about?
In light of the Walter Reed situation, and the fact several of you have made correlations in the comments section, I feel compelled to state that although we have been perturbed and stymied over the years, we have never felt neglected. I think the military doctors (civilian, as well) that have treated Blaine have, for the most part, been competent and kind and capable. Sure, there has been an asshole or two, sprinkled here and there, but I think that’s to be expected in any career field. If I’ve given anyone reason to think, what with my bitching and moaning and griping and all, that he hasn’t been treated well by the military, I’m sorry. That wasn’t my intention at all. I have no doubt just the opposite is true, and had he been employed by a civilian employer, that we would have been unemployed and in bankruptcy by now. It’s just frustrating that with regards to his medical situation, not one damn thing seems to go as planned.
And if I could get up on my medium-sized soap box, regarding Walter Reed and the military in general, I have just one word to sum up the entire situation: Overburdened. Blaine’s never been treated at Walter Reed; we’ve never been there; I have no idea what has happened there. But you, (and I don’t mean YOU-you, but “you” in general) can only slash the military budget so much, so many times, and still expect top-quality services across the board. When people say they are tired of seeing money spent on tanks and bombs and guns, and the war in Iraq needs to end, they need to understand that cutting defense spending doesn’t only affect the war on terror. It also means less military personnel overall everywhere, which means less doctors and less nurses treating more patients; it means military hospitals don’t always have the funding for equipment and supplies and medications; it means benefits have to be cut, both for active-duty and veterans, it means less repair work on military bases and military housing; it means more and more Department of Defense schools being shut down; it means fewer and fewer active-duty members, who still have to do accomplish the same amount of work that was done when the military was 30 percent larger. Most appalling to me, it means allowing an environment where airmen with families are paid so little that they are eligible for food stamps. And that’s just wrong.
OK, off the soapbox now.
Actually, the authorization expiring makes me realize it’s been exactly four years since Blaine was diagnosed. Referrals are good for one year, which is why it’s time to renew his. Four years. March of 2003. Was that a long time ago, or what? And it reminds me that I don’t think I’ve ever told the story of when he was diagnosed, and how I found out. I’ll share it with you sometime, because it’s actually a little bit funny.
In the meantime, thanks for giving me the space to vent here about what is going on with him, but please know that’s all it is; venting. Me, letting off a little steam and fear and anxiety, the best way I know how. With insults and four-letter words.
Lots and lots of four-letter words.
They’re the best kind, after all.
Pause .....
Sorry there’s no new entry today (I remember the days when posting twice a week seemed like a lot, now I feel weird if I miss a day) but Tuesdays are usually difficult for me to get on the computer. It’s the day I volunteer at the kids school from 8-3, then rush home for snacks and homework, leave again for soccer practice (Kendrie) soccer practice (Kellen) and basketball practice (Kellen) all three at different times in different places. Home by 7:30, make a delicious late-dinner for my family (Ha, how about mini-pizzas, because they’re quick, and nothing says “I love you and care about your nutritional health” quite like slapping some cheese on an English muffin), finish homework, baths, then story time, because I am a devoted parent, except unfortunately last night I actually fell asleep sitting up on the sofa with “The Boxcar Children” propped in my lap. At 9pm. Seriously. 9 pm. I think I need to have my thyroid checked or something. Today’s not looking much better, since I’m proctoring writing tests at the school in the morning, then splurging with part of our income tax return to have cruise control put on Blaine’s truck and will be at the dealers all afternoon. Wow, cruise control. We are wild and crazy when we get some extra cash in our hands, aren’t we? Quick jaunt to Jamaica? Big-screen TV? Boob lift? No, cruise control.
Add in to this the fact that Blaine is in Seattle this week so I’m doing the solo parenting gig for a few …. Wait. What? He’s NOT in Seattle this week? "But I thought this was the follow-up visit he has had planned for months, to get his second post-radiation MRI of his head, meet with his oncologist, meet with the surgeon, and have the CT done of his lungs for that stupid, stupid mass in his shoulder????" Well, that was the plan anyway. He was supposed to leave Sunday, but we were contacted late Friday afternoon and informed that his Tricare referral-authorization had expired the day before. And since it takes them 3 to 5 working days to push through a new authorization, he wasn’t allowed to go to Seattle. So the whole thing will have to be rescheduled, with all the doctors and all the tests, once the new authorization is approved.
What-the-fuck-ever.
Add in to this the fact that Blaine is in Seattle this week so I’m doing the solo parenting gig for a few …. Wait. What? He’s NOT in Seattle this week? "But I thought this was the follow-up visit he has had planned for months, to get his second post-radiation MRI of his head, meet with his oncologist, meet with the surgeon, and have the CT done of his lungs for that stupid, stupid mass in his shoulder????" Well, that was the plan anyway. He was supposed to leave Sunday, but we were contacted late Friday afternoon and informed that his Tricare referral-authorization had expired the day before. And since it takes them 3 to 5 working days to push through a new authorization, he wasn’t allowed to go to Seattle. So the whole thing will have to be rescheduled, with all the doctors and all the tests, once the new authorization is approved.
What-the-fuck-ever.
Thursday, March 01, 2007
No News Is .... Well, Just What We Expected.
But we feel better, just the same.
Thanks to all of you for your nice notes and warm thoughts today. We didn’t get any definitive information at the doctor’s appointment, but we didn’t expect any, to be honest. Unless the physician had developed x-ray vision within the past week and could peer right into Blaine’s shoulder, or he could sense what the mass is … “With his mind”.... {picture me, raising my eyebrows and rubbing my temples} … then we knew we wouldn’t find that out today. But it was a chance for us to vent a little, and have our feelings and frustration validated. And he agreed that we’ve become a quintessential little dog, chasing our tail, yapping our fool-head off, and never getting anywhere. Nothing is actually going to CHANGE, but he’s aware, and we have a bit of a plan, so that’s encouraging. I’ll let you know more when I know more, after Blaine’s follow-up appointments in Seattle next week. In the meantime, thanks for keeping us in your thoughts!
First thing tomorrow morning, back to Fertility Watch, 1996.
Thanks to all of you for your nice notes and warm thoughts today. We didn’t get any definitive information at the doctor’s appointment, but we didn’t expect any, to be honest. Unless the physician had developed x-ray vision within the past week and could peer right into Blaine’s shoulder, or he could sense what the mass is … “With his mind”.... {picture me, raising my eyebrows and rubbing my temples} … then we knew we wouldn’t find that out today. But it was a chance for us to vent a little, and have our feelings and frustration validated. And he agreed that we’ve become a quintessential little dog, chasing our tail, yapping our fool-head off, and never getting anywhere. Nothing is actually going to CHANGE, but he’s aware, and we have a bit of a plan, so that’s encouraging. I’ll let you know more when I know more, after Blaine’s follow-up appointments in Seattle next week. In the meantime, thanks for keeping us in your thoughts!
First thing tomorrow morning, back to Fertility Watch, 1996.
Wednesday, February 28, 2007
We interrupt our regularly scheduled programming...
OK, no bashing me on spelling this time. I'm typing this directly into Blogger, which doesn't have spell check, and I'm too lazy to dig out the dictionary for words of which I'm unsure. So if I "party" for "partly" or "rejuvanate" for "rejuvenate", you guys are just going to have to forgive me.
No big entry tonight with continuing details about our reproductive life. It's late, I'm tired, and I didn't feel like rambling on about my lethargic ovaries this evening. Instead, I drove two hours south to have dinner with one of my BFF, Louis. (Is it ok to say "BFF" when you're talking about a guy, or is that a little lame and girly?) Louis and I have been friends since we were eleven .... since that fateful, pre-destined day in the sixth grade when he first transfered to our school, and was the shy, skinny new kid with glasses, and being theobnoxious tattletale concerned classmate I was, I let him know that Ryan Helms and Roby Mason were planning to beat the crap out of him at recess.
So pretty much, for the past thirty years, Louis has owed me his life. Which I remind him of every time I see him. However, since we live nine hundred and fifty miles apart, it doesn't happen often enough. He was in Florida on business this week, so he drove two hours up and I drove two hours down just so we could meet in the middle for dinner. AND, he offered to share his dessert with me. Is that a BFF, or what?
Normally I let him pay back his eternal debt and gratitude for saving his sixth-grade hide by letting him buy drinks, but not tonight. PartLy because I donated blood today and the technician told me no alcohol for 48 hours, and partLy because last I heard, the highway patrol frowns upon drinking and driving. And rumor has it that you can't get Diet Dr. Pepper in jail, so there is no WAY I'm going there!
So instead, I'll post and ask for positive thoughts for Blaine and me tomorrow. I think, finally, at long last, the shit has hit the fan and Blaine has reached his limit.
Remember the shoulder thing? The mass in his shoulder, and the fact that ever since his surgery in Seattle, he hasn't been able to raise his arm? And how his PCM (primary care manager) had no idea, so ordered a ultrasound, cat scan, and MRI, all of which were inconclusive? So he authorized a referral to a surgeon, who Blaine saw two weeks ago. (I'm not even sure if I posted about this part .... I was too busy getting started with the never-ending post about my fertility-drug-induced hot flashes and mood swings) Anyway, the surgeon took one look at the mass in his shoulder, said, "Yes, that's indeed bizarre. I have no idea. But, I'm not the person you should see. I'm a *general* surgeon. I think you need to see an *orthopedic* surgeon. Thank you. Good day."
So we waited two weeks for ANOTHER referral to an orthopedic surgeon, who Blaine saw today. He looked at Blaine's cat scan and MRI results, examined his shoulder, and said, "Yes, that's indeed bizarre. I have no idea. And SINCE I have no idea, we are going to go on the assumption that your head and neck cancer has mestastisized and you now have lung cancer. The bottom of your shoulder is technically the top of your lungs. I want you to have a bone scan and get pictures of your lungs immediately. Thank you. Good day." And Blaine was left standing there, thinking, "What? Did that guy just say lung cancer???? Is he freaking kidding me???"
Now, I'm sure this doctor is a go-to orthopedic surgeon, and if I ever have tennis elbow, or a nice, juicy ACL tear that needs repairing, he'll be the one I call. But it bothers me that he sort of, psuedo, unoffically diagnosed Blaine with lung cancer considering ..... a) he is not an oncologist, b) he is not a lung doctor, c) they haven't done any tests yet, and d) well, for goodness sake, even if we don't believe it to be true doesn't mean we want to hear those words said out loud!
And this was pretty much the point today where Blaine said: "I. HAVE. HAD. IT."
Currently, he has nine different doctors, treating him for all different things. His pain management specialist, his oral surgeon, his head and neck surgeon, his oncologist, his psychologist, the new pain psychologist they are sending him to, his prosthodontist, this new, orthopedic surgeon /slash/oncologist /slash/lung doctor, plus his primary care manager who is supposed to be coordinating all this. His orthopedic surgeon wants these tests done asap; he has an appointment in Seattle on Monday to meet with his head and neck surgeon to see how the surgical sites (head and arm) are healing from his surgery last Nov, and he's slated to meet with his oncologist (also in Seattle) to get another MRI done to make sure his head and sinus area is still cancer-free. He has an appointment on Thursday at Fort Gordon to meet with his oral surgeon to see how the posts and implants they just put in are healing . Blaine's excited to work with the prosthodontist because that means he'll be on his way to having teeth again. Oh, and did I mention that they're sending him for sleep study next week because he's still only sleeping a few hours each night due to pain? Cue pain psychologist.
So I think the lung cancer comment today was the final straw and Blaine decided he was tired of having thirty-seven chefs in the kitchen. Only they're in kitchens all over the country. And none of them know what the others are doing. And they just keep throwing shit in the pot and stirring. (I know, that's a lousy analogy, but its after midnight and I'm sleepy.) So he called his PCM and apparently left a very nasty voice mail for the nurse .... which, if you know Blaine, know how extremely out of character that is for him. But it must have had the desired effect, because they called back and said he has an appointment tomorrow morning at nine "to discuss things."
There's a phrase used in the military .... cluster-fuck: Definition as follows: "Miltary term for a situation caused by too many inept officers, cluster referring to the insignia worn by Majors and LT. Colonels, oak leaf clusters. 'The planning for this operation was a complete cluster fuck.' "
Not very polite, but to the point. Blaine's medical care has turned into a cluster-fuck. I truly believe he has nine competent, caring doctors (in fact, a few of them are practically saints, as far as we are concerned and we do believe we owe one or two of them Blaine's life) but we are sick and tired of the right hand not knowing what the left hand is doing. It's time for somebody to put a stop to the cluster fuck and get this mess straightened out.
Hopefully we'll be doing that at 9am tomorrow. Wish us luck.
PS. If you really, really, badly want to tie this into the previous infertility entries, I'm pretty sure there's a joke to be made somewhere about the shoulder mass being nothing more than wear and tear on an over-developed rotator cuff from all the "deposits" Blaine had to make all those years. But I'm too lazy to find the joke.
No big entry tonight with continuing details about our reproductive life. It's late, I'm tired, and I didn't feel like rambling on about my lethargic ovaries this evening. Instead, I drove two hours south to have dinner with one of my BFF, Louis. (Is it ok to say "BFF" when you're talking about a guy, or is that a little lame and girly?) Louis and I have been friends since we were eleven .... since that fateful, pre-destined day in the sixth grade when he first transfered to our school, and was the shy, skinny new kid with glasses, and being the
So pretty much, for the past thirty years, Louis has owed me his life. Which I remind him of every time I see him. However, since we live nine hundred and fifty miles apart, it doesn't happen often enough. He was in Florida on business this week, so he drove two hours up and I drove two hours down just so we could meet in the middle for dinner. AND, he offered to share his dessert with me. Is that a BFF, or what?
Normally I let him pay back his eternal debt and gratitude for saving his sixth-grade hide by letting him buy drinks, but not tonight. PartLy because I donated blood today and the technician told me no alcohol for 48 hours, and partLy because last I heard, the highway patrol frowns upon drinking and driving. And rumor has it that you can't get Diet Dr. Pepper in jail, so there is no WAY I'm going there!
So instead, I'll post and ask for positive thoughts for Blaine and me tomorrow. I think, finally, at long last, the shit has hit the fan and Blaine has reached his limit.
Remember the shoulder thing? The mass in his shoulder, and the fact that ever since his surgery in Seattle, he hasn't been able to raise his arm? And how his PCM (primary care manager) had no idea, so ordered a ultrasound, cat scan, and MRI, all of which were inconclusive? So he authorized a referral to a surgeon, who Blaine saw two weeks ago. (I'm not even sure if I posted about this part .... I was too busy getting started with the never-ending post about my fertility-drug-induced hot flashes and mood swings) Anyway, the surgeon took one look at the mass in his shoulder, said, "Yes, that's indeed bizarre. I have no idea. But, I'm not the person you should see. I'm a *general* surgeon. I think you need to see an *orthopedic* surgeon. Thank you. Good day."
So we waited two weeks for ANOTHER referral to an orthopedic surgeon, who Blaine saw today. He looked at Blaine's cat scan and MRI results, examined his shoulder, and said, "Yes, that's indeed bizarre. I have no idea. And SINCE I have no idea, we are going to go on the assumption that your head and neck cancer has mestastisized and you now have lung cancer. The bottom of your shoulder is technically the top of your lungs. I want you to have a bone scan and get pictures of your lungs immediately. Thank you. Good day." And Blaine was left standing there, thinking, "What? Did that guy just say lung cancer???? Is he freaking kidding me???"
Now, I'm sure this doctor is a go-to orthopedic surgeon, and if I ever have tennis elbow, or a nice, juicy ACL tear that needs repairing, he'll be the one I call. But it bothers me that he sort of, psuedo, unoffically diagnosed Blaine with lung cancer considering ..... a) he is not an oncologist, b) he is not a lung doctor, c) they haven't done any tests yet, and d) well, for goodness sake, even if we don't believe it to be true doesn't mean we want to hear those words said out loud!
And this was pretty much the point today where Blaine said: "I. HAVE. HAD. IT."
Currently, he has nine different doctors, treating him for all different things. His pain management specialist, his oral surgeon, his head and neck surgeon, his oncologist, his psychologist, the new pain psychologist they are sending him to, his prosthodontist, this new, orthopedic surgeon /slash/oncologist /slash/lung doctor, plus his primary care manager who is supposed to be coordinating all this. His orthopedic surgeon wants these tests done asap; he has an appointment in Seattle on Monday to meet with his head and neck surgeon to see how the surgical sites (head and arm) are healing from his surgery last Nov, and he's slated to meet with his oncologist (also in Seattle) to get another MRI done to make sure his head and sinus area is still cancer-free. He has an appointment on Thursday at Fort Gordon to meet with his oral surgeon to see how the posts and implants they just put in are healing . Blaine's excited to work with the prosthodontist because that means he'll be on his way to having teeth again. Oh, and did I mention that they're sending him for sleep study next week because he's still only sleeping a few hours each night due to pain? Cue pain psychologist.
So I think the lung cancer comment today was the final straw and Blaine decided he was tired of having thirty-seven chefs in the kitchen. Only they're in kitchens all over the country. And none of them know what the others are doing. And they just keep throwing shit in the pot and stirring. (I know, that's a lousy analogy, but its after midnight and I'm sleepy.) So he called his PCM and apparently left a very nasty voice mail for the nurse .... which, if you know Blaine, know how extremely out of character that is for him. But it must have had the desired effect, because they called back and said he has an appointment tomorrow morning at nine "to discuss things."
There's a phrase used in the military .... cluster-fuck: Definition as follows: "Miltary term for a situation caused by too many inept officers, cluster referring to the insignia worn by Majors and LT. Colonels, oak leaf clusters. 'The planning for this operation was a complete cluster fuck.' "
Not very polite, but to the point. Blaine's medical care has turned into a cluster-fuck. I truly believe he has nine competent, caring doctors (in fact, a few of them are practically saints, as far as we are concerned and we do believe we owe one or two of them Blaine's life) but we are sick and tired of the right hand not knowing what the left hand is doing. It's time for somebody to put a stop to the cluster fuck and get this mess straightened out.
Hopefully we'll be doing that at 9am tomorrow. Wish us luck.
PS. If you really, really, badly want to tie this into the previous infertility entries, I'm pretty sure there's a joke to be made somewhere about the shoulder mass being nothing more than wear and tear on an over-developed rotator cuff from all the "deposits" Blaine had to make all those years. But I'm too lazy to find the joke.
Monday, January 29, 2007
Drum roll, please.
Blaine got the phone call at 3:30 this afternoon (good thing I hadn’t been holding my breath since 8am or anything) and the results of last week’s cat scan are:
Inconclusive.
Hmmm. Imagine that. Picture me, with a look of surprise and astonishment on my face.
Really?!?!?
Inconclusive? Wow, go figure.
So, now they want him to have an MRI done.
Let’s review, shall we?
Two weeks ago:
Doctor orders a cat scan.
We wait on the insurance authorization and referral.
Finally get appointment at imaging center.
They can’t start an IV, so the test is done without contrast.
We wait almost a week for the results, which are inconclusive.
NOW, the plan is:
Doctor has ordered an MRI.
We will wait on the insurance authorization and referral.
He will go to the appointment at the same imagine center.
When (not if, but WHEN) they can’t get an IV started, they will do the test without contrast.
We will wait for the results.
I’m glad to see we have a fresh game plan and are taking decisive action.
Who wants to guess whether or not the MRI will be inconclusive, and that ten days from now we’ll be no farther ahead than we are now.
I feel like a very big, very slow, very impotent, very frustrated hamster on the wheel of life.
I seriously need a drink.
And did you know that if you have stitches from your finger-quote-skin-cancer-surgery-end-finger-quote, that is considered an open wound and you are not allowed to donate blood? And sometimes you won’t find that out until after you’ve driven half an hour to the donor center and filled out the questionnaire and had all your vitals taken and had your finger poked not once but twice because that stupid blood always rises back up to the top of the solution don’t I eat enough red meat and you’ve answered every single question about whether or not you’ve ever had sex with a goat in Africa who ever had sex for money with a needle using heroin addict who ever had an organ transplant in the UK in the last five years???
And then, you’ll be asked to come back a week later, when the stitches are out.
Twenty bucks says I’m able to donate blood before we know anything about Blaine.
Any takers?
PS. Try to contain your own surprise that I wasn’t accepted at art school, as per my surprised-look face drawing. You *did* know that was a surprised face, right?
Inconclusive.
Hmmm. Imagine that. Picture me, with a look of surprise and astonishment on my face.
Really?!?!?
Inconclusive? Wow, go figure.
So, now they want him to have an MRI done.
Let’s review, shall we?
Two weeks ago:
Doctor orders a cat scan.
We wait on the insurance authorization and referral.
Finally get appointment at imaging center.
They can’t start an IV, so the test is done without contrast.
We wait almost a week for the results, which are inconclusive.
NOW, the plan is:
Doctor has ordered an MRI.
We will wait on the insurance authorization and referral.
He will go to the appointment at the same imagine center.
When (not if, but WHEN) they can’t get an IV started, they will do the test without contrast.
We will wait for the results.
I’m glad to see we have a fresh game plan and are taking decisive action.
Who wants to guess whether or not the MRI will be inconclusive, and that ten days from now we’ll be no farther ahead than we are now.
I feel like a very big, very slow, very impotent, very frustrated hamster on the wheel of life.
I seriously need a drink.
And did you know that if you have stitches from your finger-quote-skin-cancer-surgery-end-finger-quote, that is considered an open wound and you are not allowed to donate blood? And sometimes you won’t find that out until after you’ve driven half an hour to the donor center and filled out the questionnaire and had all your vitals taken and had your finger poked not once but twice because that stupid blood always rises back up to the top of the solution don’t I eat enough red meat and you’ve answered every single question about whether or not you’ve ever had sex with a goat in Africa who ever had sex for money with a needle using heroin addict who ever had an organ transplant in the UK in the last five years???
And then, you’ll be asked to come back a week later, when the stitches are out.
Twenty bucks says I’m able to donate blood before we know anything about Blaine.
Any takers?
PS. Try to contain your own surprise that I wasn’t accepted at art school, as per my surprised-look face drawing. You *did* know that was a surprised face, right?
Friday, January 12, 2007
Still Waiting ....
I want to thank all of you for your kind, concerned, and sometimes hysterically funny comments in the guestbook about this recent, um, what should we call it ….. “oddity” regarding Blaine’s recovery and health. I was going to go back in the comment section myself and comment on the comments, like I’ve started doing lately because quite frankly, it’s fun! And entertaining! And you guys crack me up! but there were just too many of you. I know, what a nice time-management problem to have!
Despite the fact it must appear I can’t keep my mouth shut about anything, the way I ramble on endlessly and seem to share every aspect of my life with the internet, let me reassure you that I do have *some* discretion. I don’t share everything, all the time, immediately, despite how unbelievable that must seem. Had I suspected, for one nanosecond, that something was truly wrong, I would have waited for test results to write about it. I just feel the need to clarify that, so no-one thinks I’m sitting here panicked. Or that Blaine is sitting here panicked. We’re slightly annoyed. We’re slightly bewildered. Personally, I’m very, very hungry because I started that #(*$&#(*& Atkins again and I’d pretty much kill for a piece of cornbread or cake right about now. But no, we are not panicked.
And also so the anonymous person who wrote to tell me I was the most conceited person on the planet to think I deserved a blog all about myself would know, well, so they would know “shut up, I deleted you and your stinky comment.” I share things as I see fit, and thanks to all of you for responding with kindness. And rib-splitting curse words. And the suggestion of a DDP machine in my stroke rehab village because I am SO putting that on my list of requirements! Right behind “cute male nurses who will wave me with palm fronds and feed me grapes.”
Two and a half days, and still no referral. No referral, no appointment. Given Blaine’s history, it’s a little frustrating, but Tricare is well-known for their mind-boggling, glacier-melting pace at times. Of course, many large-scale insurance companies move just as slowly, so I suspect Tricare is no worse than most. I’d love nothing more than to make a grand statement by sweeping into the imaging center and DEMANDING the cat scan this INSTANT, but they won’t see him without the authorization, so sweeping and demanding would only make me look silly. Add a feather boa and complete the picture.
Plus, I’ve promised never to complain about Tricare again, after receiving our most recent statement from Seattle in the mail, for $55,000 (hospital charges only) and being able to experience the unbelievable, awesome relief of knowing it would be paid, and not out of our pocket. Tricare might be slow and infuriating at times, but without a doubt, they have saved our family from bankruptcy not once, but twice. So, to all you taxpayers, thank you.
I’m sure the appointment will happen soon, and I’m sure things will be fine. I *am* kind of curious about what this lump could be, since my comments about watches and speculums were in jest. I mean … it’s not …. It couldn’t be …. you don’t think …. Do you? Naaaaahhhhh.
In the meantime, those of you who have followed along in Kendrie’s journal and are familiar with the writing project Terry and I have going, I have the next topic up for discussion there now. Please take a moment to visit, and even more please pretty pretty please with a cherry on top, e-mail me if you have experiences, advice, wisdom, or opinions you’d like to share.
In the meantime, I’ll be expanding my stroke facility list:
1. Cute male nurses
2. Diet Dr. Pepper machine
3. A dietician who has never heard the word Atkins.
Suggestions???
Despite the fact it must appear I can’t keep my mouth shut about anything, the way I ramble on endlessly and seem to share every aspect of my life with the internet, let me reassure you that I do have *some* discretion. I don’t share everything, all the time, immediately, despite how unbelievable that must seem. Had I suspected, for one nanosecond, that something was truly wrong, I would have waited for test results to write about it. I just feel the need to clarify that, so no-one thinks I’m sitting here panicked. Or that Blaine is sitting here panicked. We’re slightly annoyed. We’re slightly bewildered. Personally, I’m very, very hungry because I started that #(*$&#(*& Atkins again and I’d pretty much kill for a piece of cornbread or cake right about now. But no, we are not panicked.
And also so the anonymous person who wrote to tell me I was the most conceited person on the planet to think I deserved a blog all about myself would know, well, so they would know “shut up, I deleted you and your stinky comment.” I share things as I see fit, and thanks to all of you for responding with kindness. And rib-splitting curse words. And the suggestion of a DDP machine in my stroke rehab village because I am SO putting that on my list of requirements! Right behind “cute male nurses who will wave me with palm fronds and feed me grapes.”
Two and a half days, and still no referral. No referral, no appointment. Given Blaine’s history, it’s a little frustrating, but Tricare is well-known for their mind-boggling, glacier-melting pace at times. Of course, many large-scale insurance companies move just as slowly, so I suspect Tricare is no worse than most. I’d love nothing more than to make a grand statement by sweeping into the imaging center and DEMANDING the cat scan this INSTANT, but they won’t see him without the authorization, so sweeping and demanding would only make me look silly. Add a feather boa and complete the picture.
Plus, I’ve promised never to complain about Tricare again, after receiving our most recent statement from Seattle in the mail, for $55,000 (hospital charges only) and being able to experience the unbelievable, awesome relief of knowing it would be paid, and not out of our pocket. Tricare might be slow and infuriating at times, but without a doubt, they have saved our family from bankruptcy not once, but twice. So, to all you taxpayers, thank you.
I’m sure the appointment will happen soon, and I’m sure things will be fine. I *am* kind of curious about what this lump could be, since my comments about watches and speculums were in jest. I mean … it’s not …. It couldn’t be …. you don’t think …. Do you? Naaaaahhhhh.
In the meantime, those of you who have followed along in Kendrie’s journal and are familiar with the writing project Terry and I have going, I have the next topic up for discussion there now. Please take a moment to visit, and even more please pretty pretty please with a cherry on top, e-mail me if you have experiences, advice, wisdom, or opinions you’d like to share.
In the meantime, I’ll be expanding my stroke facility list:
1. Cute male nurses
2. Diet Dr. Pepper machine
3. A dietician who has never heard the word Atkins.
Suggestions???
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