I just realized (after a whole 'nother day of reading) that the Oct. 1 pathology report can only tell us what the scraped out tumors tell the pathologist.
That is NOT the whole story.
Oct. 1 can tell us the "grade" of the tumor--its aggressiveness/invasiveness rating. But what Oct. 1 canNOT tell us is the ultimate "clinical stage" number, which can only be determined after the surgeon goes in through the abdomen (rather than through the, ahem, so-and-so, as he did for this past week's inspection) and looks at the lymph glands. Without a lymph gland inspection, I am pretty sure they can only speculate about staging.
If any one lymph gland is participating in the misbehavior, then the stage can go as high as 4. And to know for sure that we are safely in a lower stage, they have to rule out the lymph glands.
This is good and bad. Bad because we have yet another kind of wait. But good because we have another break in which to calm down and get ready for the next revelation, while hoping the next revelation is one of purely good news.
AND we have great reason to expect that the lymph glands are clear--in that the first pathology report from Watauga Hospital in Boone, after the CT scan, said there was NO lymph involvement showing up on the CT scan. Meaning it's NOT at stage 4. And stage 4 is exactly where you DON'T want it to be.
So yeah. That's today's update.
I hope I'm not wearing out your interest with too-frequent updates. It's hard to know how to do one of these blog things. I have to guess what's too much, and what's too little.
I wish we could just have a big party and you could all just come over and play with us.
And make m'lord William laugh.
Saturday, September 26, 2009
Friday, September 25, 2009
The Big Moment: October 1
Duke University called us today and said that Dr. Walther would like to see Bill on Thursday, October 1, 10 a.m.
Since that will be eight days after the surgery, and since he is asking us to come all the way to Durham for the meeting, I'm almost sure I correctly suppose that this will be the meeting during which the pathology report is revealed and Bill's options are eumerated.
YIKES!
HALP!
Bill is actually planning to teach both days next week--Monday and Wednesday--but his pain level is giving him some uncertainty about Monday, at least.
Either way, Dr. Walther was most considerate in picking a day that wouldn't interfere with Bill's schedule.
WHAT IS IT LIKE IN OUR HOUSE?
If you were here, you would experience puppies running through the house almost constantly and barking and playing tug-of-war with toy monkeys. This makes Bill laugh a lot and creates a fun, albeit circumscribed, atmosphere.
You would see Bill loitering in one of two places: either resting in his bed or sitting on his favorite sofa on the porch, which has a view of Grandfather Mountain.
You would note that we're both being pretty quiet, talking only for short bouts (I like A LOT of talking, but Bill likes to read books and look at his laptop, so I have to keep imaginary duct tape on my mouth not to annoy him).
You would notice that today Bill seems to feel a tiny bit better and a lot less freaked out than he did yesterday.
You would smell pot roast cooking, and Cuban black beans and yellow rice. I know it's not THAT healthy, but Bill wants comfort food this week.
You would see all the trees on the mountains outside the window starting to turn yellow and orange and lose their leaves, and you would note an enormous amount of rain and fog--which doesn't do much for the mood factor and which seems unpleasantly metaphorical.
And you would see me sitting in this corner on the porch, either googling every blessed article ever published on bladder cancer, or you'd see me typing this message to you on my laptop, and wondering how to express my profound comfort and gratitude that you are there, and reading this, and interested, and sticking with us. You can't imagine what it means to me, and to us.
I just love you.
Bethkins
Since that will be eight days after the surgery, and since he is asking us to come all the way to Durham for the meeting, I'm almost sure I correctly suppose that this will be the meeting during which the pathology report is revealed and Bill's options are eumerated.
YIKES!
HALP!
Bill is actually planning to teach both days next week--Monday and Wednesday--but his pain level is giving him some uncertainty about Monday, at least.
Either way, Dr. Walther was most considerate in picking a day that wouldn't interfere with Bill's schedule.
WHAT IS IT LIKE IN OUR HOUSE?
If you were here, you would experience puppies running through the house almost constantly and barking and playing tug-of-war with toy monkeys. This makes Bill laugh a lot and creates a fun, albeit circumscribed, atmosphere.
You would see Bill loitering in one of two places: either resting in his bed or sitting on his favorite sofa on the porch, which has a view of Grandfather Mountain.
You would note that we're both being pretty quiet, talking only for short bouts (I like A LOT of talking, but Bill likes to read books and look at his laptop, so I have to keep imaginary duct tape on my mouth not to annoy him).
You would notice that today Bill seems to feel a tiny bit better and a lot less freaked out than he did yesterday.
You would smell pot roast cooking, and Cuban black beans and yellow rice. I know it's not THAT healthy, but Bill wants comfort food this week.
You would see all the trees on the mountains outside the window starting to turn yellow and orange and lose their leaves, and you would note an enormous amount of rain and fog--which doesn't do much for the mood factor and which seems unpleasantly metaphorical.
And you would see me sitting in this corner on the porch, either googling every blessed article ever published on bladder cancer, or you'd see me typing this message to you on my laptop, and wondering how to express my profound comfort and gratitude that you are there, and reading this, and interested, and sticking with us. You can't imagine what it means to me, and to us.
I just love you.
Bethkins
Thursday, September 24, 2009
Billy Bob Drennan is One Hurtin Cowpoke
Oh, but our Adventurer Billy Bob is a hurtin' cowpoke.
It's late afternoon, and we're back in the mountains--blessedly HOME.
But poor ol Bill is only beginning to feel what hit him.
He has pretty good drugs (thanks for the drug-specific prayers from K.G.!), but they barely touch the pain he is in. I mean, they TOLD him it would hurt like this, but there is such a difference between "knowing it's going to hurt" and "KNOWING IT HURTS", and right now, he is FULL OF KNOWLEDGE, lying on his bed trying to sleep and not to move.
The ride home (almost 3 hours) involved stopping every 20 minutes at restrooms for him, and even then, he could barely stand the feeling of "I Am Going To Scream If Anyone is In That Restroom When I Get There!"
His mood is pretty good, but our conversations remain pretty much superficial on the subject of his condition--he just doesn't want to talk about it much--so I try to slip in GOOD things I've found in my 23-hours-a-day of google research on bladder cancer. (23 hours is only a slight exaggeration).
Our Angels-in-Disguise neighbors G. and J. are bringing us dinner tonight, figuring we wouldn't want to deal with cooking after the experience we've just survived. Ohhhhhhhhh, what a blessing! I feel bad taking such a gift, knowing how much trouble and expense it is, but at the same time, we are practically kneeling in gratitude for such thoughtfulness and for hitting the nail so completely on the head. Indeed, we WOULDN'T have wanted to deal with grocery shopping and cooking tonight.
Friends are the whole deal. What an understatement that is.
More soon.
love
Bethie
It's late afternoon, and we're back in the mountains--blessedly HOME.
But poor ol Bill is only beginning to feel what hit him.
He has pretty good drugs (thanks for the drug-specific prayers from K.G.!), but they barely touch the pain he is in. I mean, they TOLD him it would hurt like this, but there is such a difference between "knowing it's going to hurt" and "KNOWING IT HURTS", and right now, he is FULL OF KNOWLEDGE, lying on his bed trying to sleep and not to move.
The ride home (almost 3 hours) involved stopping every 20 minutes at restrooms for him, and even then, he could barely stand the feeling of "I Am Going To Scream If Anyone is In That Restroom When I Get There!"
His mood is pretty good, but our conversations remain pretty much superficial on the subject of his condition--he just doesn't want to talk about it much--so I try to slip in GOOD things I've found in my 23-hours-a-day of google research on bladder cancer. (23 hours is only a slight exaggeration).
Our Angels-in-Disguise neighbors G. and J. are bringing us dinner tonight, figuring we wouldn't want to deal with cooking after the experience we've just survived. Ohhhhhhhhh, what a blessing! I feel bad taking such a gift, knowing how much trouble and expense it is, but at the same time, we are practically kneeling in gratitude for such thoughtfulness and for hitting the nail so completely on the head. Indeed, we WOULDN'T have wanted to deal with grocery shopping and cooking tonight.
Friends are the whole deal. What an understatement that is.
More soon.
love
Bethie
Wednesday, September 23, 2009
Bill's procedure went well--mixed outcome...
I'm in the hotel, and I finally got to speak to bill (i had to call the nurse's station to find out why he wasn't answering his phone. OH! they forgot to put a phone in his room? THAT'S why.... Hmmmm.). He had completed his post-operation interview with Dr. Walther by 6:30 this evening.
It seems Dr. Walther shrewdly surmised that Bill wanted very little information while I wanted massive landfills piled full of facts--narratives containing every atomic detail.
So Bill got an interview which mostly comprised the phrase, "It's all speculation at this point. let's wait until we have the pathology report." Whereas I got a 20-minute tete-a-tete when I was in the consult room alone with Dr. W after the procedure--a debriefing so filled with facts that I could probably publish an article on bladder cancer in the New England Journal of Medicine.
The procedure was supposed to take one hour but took two. Part of that was some kind of problem with Bill's throat vis-a-vis anesthesia, to the point that they had to put some kind of gadget into his throat and hold it open so the air tubes could go in successfully. "Huge problems with intubation!" exclaimed Dr. W. to me, him being lucky that I have done nothing for the last 2 weeks but memorize medical jargon, so I could speak his foreign language. otherwise it would have been, from me, a big, "Say WHAT, dude?"
Bill's body handled the whole procedure like a very healthy adult, with no problems, yet having HUGE pain afterward, which took 55 minutes to get down to a "3" level on the famous 1 to 10 scale. As soon as he awoke from general anesthesia, bill told them his pain was EASILY an 11, until they found a drug mixture that helped him. Poor boy!
RESULTS
Not so great, but could have been worse. While I can't put every detail in a blog, as it wouldn't be, well, circumspect, since the blog is open to the public and bill probably doesn't want his personal details open to the public--I can say that it is confirmed that he had cancer, a large necrotic malignant tumor, and some baby cancers springing up all around it. But so far, no evidence that it has metastisized!
Good news: it was NOT adenocarcinoma! And it did NOT involve the urachal remnant (tube from bellybutton to bladder which remains from umbilical cord). Right there, our statistics went up 20 thousand leagues.
Bad news: he's got some serious cancer in there, and it was only SCRAPED OUT PARTIALLY today--NOT removed! So it's all still in there doing its thing.
He has: TCC -- transitional cell carcinoma--PROBABLY--altho the surgeon can't say definitively without the pathology report, of course, for legal reasons. He also has CIS--carcinoma in situ--sprinkled around.
They didn't take any of his bladder out today. they just used an electric current that is like a hot knife going thru butter (surgeon's metaphor) to scrape off the big tumor and take scrape biopsies of the little ones.
WHEN WILL WE KNOW THE ACTUAL FACTS?
In about 7 days, we will have a pathologist report and an appointment will be scheduled within 10 days from now at Dr. Walther's office in Durham (another trip down) for a face-to-face "counseling session" in which bill is presented with the facts, the options, the choices.
Thereafter, there may be another surgery. We can't know until the report comes back.
RELEASE TO GO HOME
Bill should almost 100 percent certainly be released tomorrow before noon, and I will drive him back up the mountain. He plans to lie in the back seat all the way home.
Not sure what effect this will have on his work schedule. I want him to take the rest of the semester off, but he is anguishing about wanting to keep teaching this semester.
Several of the key players, like his daughter and myself, think his energy would be better spent in healing himself than enlightening 19-year-olds as to the wonders of Hamlet. But we'll see.
Email me or email bill or call or whatever you want, if you need more info. Bill is THRILLED BEYOND MEASURE about every single person who cares about him. He just can't get over it--finding out how many folks really do love the ol' curmudgeon!
I'll post again as soon as we have any new facts--maybe even tomorrow.
thank you thank you thank you for caring. you can't imagine how much it means!!!!
love,
Beth
It seems Dr. Walther shrewdly surmised that Bill wanted very little information while I wanted massive landfills piled full of facts--narratives containing every atomic detail.
So Bill got an interview which mostly comprised the phrase, "It's all speculation at this point. let's wait until we have the pathology report." Whereas I got a 20-minute tete-a-tete when I was in the consult room alone with Dr. W after the procedure--a debriefing so filled with facts that I could probably publish an article on bladder cancer in the New England Journal of Medicine.
The procedure was supposed to take one hour but took two. Part of that was some kind of problem with Bill's throat vis-a-vis anesthesia, to the point that they had to put some kind of gadget into his throat and hold it open so the air tubes could go in successfully. "Huge problems with intubation!" exclaimed Dr. W. to me, him being lucky that I have done nothing for the last 2 weeks but memorize medical jargon, so I could speak his foreign language. otherwise it would have been, from me, a big, "Say WHAT, dude?"
Bill's body handled the whole procedure like a very healthy adult, with no problems, yet having HUGE pain afterward, which took 55 minutes to get down to a "3" level on the famous 1 to 10 scale. As soon as he awoke from general anesthesia, bill told them his pain was EASILY an 11, until they found a drug mixture that helped him. Poor boy!
RESULTS
Not so great, but could have been worse. While I can't put every detail in a blog, as it wouldn't be, well, circumspect, since the blog is open to the public and bill probably doesn't want his personal details open to the public--I can say that it is confirmed that he had cancer, a large necrotic malignant tumor, and some baby cancers springing up all around it. But so far, no evidence that it has metastisized!
Good news: it was NOT adenocarcinoma! And it did NOT involve the urachal remnant (tube from bellybutton to bladder which remains from umbilical cord). Right there, our statistics went up 20 thousand leagues.
Bad news: he's got some serious cancer in there, and it was only SCRAPED OUT PARTIALLY today--NOT removed! So it's all still in there doing its thing.
He has: TCC -- transitional cell carcinoma--PROBABLY--altho the surgeon can't say definitively without the pathology report, of course, for legal reasons. He also has CIS--carcinoma in situ--sprinkled around.
They didn't take any of his bladder out today. they just used an electric current that is like a hot knife going thru butter (surgeon's metaphor) to scrape off the big tumor and take scrape biopsies of the little ones.
WHEN WILL WE KNOW THE ACTUAL FACTS?
In about 7 days, we will have a pathologist report and an appointment will be scheduled within 10 days from now at Dr. Walther's office in Durham (another trip down) for a face-to-face "counseling session" in which bill is presented with the facts, the options, the choices.
Thereafter, there may be another surgery. We can't know until the report comes back.
RELEASE TO GO HOME
Bill should almost 100 percent certainly be released tomorrow before noon, and I will drive him back up the mountain. He plans to lie in the back seat all the way home.
Not sure what effect this will have on his work schedule. I want him to take the rest of the semester off, but he is anguishing about wanting to keep teaching this semester.
Several of the key players, like his daughter and myself, think his energy would be better spent in healing himself than enlightening 19-year-olds as to the wonders of Hamlet. But we'll see.
Email me or email bill or call or whatever you want, if you need more info. Bill is THRILLED BEYOND MEASURE about every single person who cares about him. He just can't get over it--finding out how many folks really do love the ol' curmudgeon!
I'll post again as soon as we have any new facts--maybe even tomorrow.
thank you thank you thank you for caring. you can't imagine how much it means!!!!
love,
Beth
Update Pending!
It's 6:28 pm eastern time. once i can speak to bill in his room, i will write the report here. i need to see what his dr said at 6 pm. i thought i had all the facts, but bill was so sleepy at 530 and couldnt keep his eyes open so i agreed to go back to the hotel, but i tried to call him at 6 and they wouldnt let me talk to him bc the dr was with him, so let me get hold of him and see what the dr said, and i will post more. i did have a private meeting with the dr immediatlely after surgery, but i dont want to post certain things if they would upset bill, so i need to see what bill knows.
sitting alone in my hotel room. what a difficult, stressful, alone alone alone alone day it was. may i--or you--never spend a day like that again.
sorry for my spelling. im rushing thru this post.
Blessings and love and light for caring aboiut my sweet boy.
Bethie
sitting alone in my hotel room. what a difficult, stressful, alone alone alone alone day it was. may i--or you--never spend a day like that again.
sorry for my spelling. im rushing thru this post.
Blessings and love and light for caring aboiut my sweet boy.
Bethie
Tuesday, September 22, 2009
Surgery time: E-e-e-early arrival!
Okay, we're all set. We have to be at the hospital by 6:45 a.m. tomorrow, Wednesday, Sept. 23. Surgery at 8:45 a.m., and Bill is the first patient. Yay!
Bonus: The hospital has valet parking--woo hoo! That makes it easier than negotiating the MASSIVE parking garage across from the MASSIVE hospital. This way, once we're inside the hospital, we can get lost much more quickly.
AFTER THE SURGERY, WE WILL GET NEWS, THEY TELL US!
Sometimes, you get ZERO news after surgery and must wait 7 working days for the pathology report, but they told us we will definitely get SOME information from the surgeon tomorrow.
But then we thought that maybe we should go with the AntiPsychosis Too - Much - Information - Avoidance - Plan, and if it is bad news, ask the surgeon to kindly keep it to himself, and just tell us where to show up for the next Bladder Party Event.
And Bill was only half kidding with that idea!
They think we will almost definitely be released by noon on Thursday, so we will get home to Blowing Rock before dark Thursday. Hoooray! Bill might not feel great (no stitches, but the mother of all aches will most likely be occurring You Know Where), but he is apparently going to have some envy-inducing medications to get him through.
I'll post again tomorrow night, with EVERYTHING the surgeon tells us, when i get back to this hotel and to my laptop after leaving Bill for the night.
THANK YOU FOR YOUR PRAYERS AND LOVE AND FOR BEING OUR FRIENDS!!!!!!!
Bonus: The hospital has valet parking--woo hoo! That makes it easier than negotiating the MASSIVE parking garage across from the MASSIVE hospital. This way, once we're inside the hospital, we can get lost much more quickly.
AFTER THE SURGERY, WE WILL GET NEWS, THEY TELL US!
Sometimes, you get ZERO news after surgery and must wait 7 working days for the pathology report, but they told us we will definitely get SOME information from the surgeon tomorrow.
But then we thought that maybe we should go with the AntiPsychosis Too - Much - Information - Avoidance - Plan, and if it is bad news, ask the surgeon to kindly keep it to himself, and just tell us where to show up for the next Bladder Party Event.
And Bill was only half kidding with that idea!
They think we will almost definitely be released by noon on Thursday, so we will get home to Blowing Rock before dark Thursday. Hoooray! Bill might not feel great (no stitches, but the mother of all aches will most likely be occurring You Know Where), but he is apparently going to have some envy-inducing medications to get him through.
I'll post again tomorrow night, with EVERYTHING the surgeon tells us, when i get back to this hotel and to my laptop after leaving Bill for the night.
THANK YOU FOR YOUR PRAYERS AND LOVE AND FOR BEING OUR FRIENDS!!!!!!!
Saturday, September 19, 2009
Starting a little freak-out phase
These last few days before Bill has surgery and finds out all the details are getting harder and harder. Our thinking just keeps slipping back into this gloomy and anxious pond of vague imagery. It's hard even to keep mastery of the day-to-day details of life--dishes, trash out, even reading--because our life energy is being burned up with these thoughts, and we don't feel like doing even the basics.
So our new game is called "Find Ways to Think About Something Else."
This morning we watched a movie about alien pods attacking Iowa. It was satisfyingly gross. Then in one romantic scene, the guy brings the girl to his house for a little romance, and just after the first kiss, he whispers, "Why don't I go make a fire?" only we thought he said, "Why don't I go make a pie?" and we were like, "WHAT? DID HE SAY 'MAKE A PIE?'" and then there followed an hour of pie commentary through the rest of the movie--which commentary we found strikingly hilarious for some reason. Of course, it's not that hard to find things that seem funny when you're talking Iowa aliens and pie-making.
Then the other day, as we sat in the doctor's little examination room alone, waiting for 90 minutes and feeling extremely grim and depressed (ugliest office ever--terrible paint color, no art on the walls, stupid paper bed cover, ugh)--Bill comes up with something that struck me as so dang funny, I can still laugh whenever I think of it.
What happened was, I had brought this big piece of whole wheat bread in my purse (a Panera baguette) to eat when desperate, knowing we wouldn't have access to food for long stretches of time. So we're sitting there without talking, both feeling horrible and serious and morose, and after a long long silence, I said to Bill, "Would you like some brown bread? I have some in my purse."
He says nothing for a few seconds, then with a completely straight face, and still not looking at me, he says, "You sound like a Bulgarian woman--'Vood you like some brown brett?'"
"A BULGARIAN woman?"
Long silent pause. Then he looks at me, still with a straight face, and says, "Have you a beet?"
I don't know. Do Bulgarian women carry brown bread and beets around? OMG. We started laughing so hard that I think the nurses in the hall outside could hear us.
Other times, we try to think things up to make even tiny bits of fun.I got the idea of maybe renting some crazy kind of car to use while we're in Durham, just for the distraction of having something fun and different to drive.
And the dogs are funny. Always. Like right now, all of them are trying to get in my lap at the same time, while I'm typing this.
But I just thought I'd record the nature of this little mode that we are in, to keep the story real and not completely romanticized. Sometimes romanticization of illness bears terrific fruit--by which you can enjoy the taste of bittersweet songs, arrival of spiritual insights, and so forth.
And sometimes, you just can't see it any pretty way at all.
So our new game is called "Find Ways to Think About Something Else."
This morning we watched a movie about alien pods attacking Iowa. It was satisfyingly gross. Then in one romantic scene, the guy brings the girl to his house for a little romance, and just after the first kiss, he whispers, "Why don't I go make a fire?" only we thought he said, "Why don't I go make a pie?" and we were like, "WHAT? DID HE SAY 'MAKE A PIE?'" and then there followed an hour of pie commentary through the rest of the movie--which commentary we found strikingly hilarious for some reason. Of course, it's not that hard to find things that seem funny when you're talking Iowa aliens and pie-making.
Then the other day, as we sat in the doctor's little examination room alone, waiting for 90 minutes and feeling extremely grim and depressed (ugliest office ever--terrible paint color, no art on the walls, stupid paper bed cover, ugh)--Bill comes up with something that struck me as so dang funny, I can still laugh whenever I think of it.
What happened was, I had brought this big piece of whole wheat bread in my purse (a Panera baguette) to eat when desperate, knowing we wouldn't have access to food for long stretches of time. So we're sitting there without talking, both feeling horrible and serious and morose, and after a long long silence, I said to Bill, "Would you like some brown bread? I have some in my purse."
He says nothing for a few seconds, then with a completely straight face, and still not looking at me, he says, "You sound like a Bulgarian woman--'Vood you like some brown brett?'"
"A BULGARIAN woman?"
Long silent pause. Then he looks at me, still with a straight face, and says, "Have you a beet?"
I don't know. Do Bulgarian women carry brown bread and beets around? OMG. We started laughing so hard that I think the nurses in the hall outside could hear us.
Other times, we try to think things up to make even tiny bits of fun.I got the idea of maybe renting some crazy kind of car to use while we're in Durham, just for the distraction of having something fun and different to drive.
And the dogs are funny. Always. Like right now, all of them are trying to get in my lap at the same time, while I'm typing this.
But I just thought I'd record the nature of this little mode that we are in, to keep the story real and not completely romanticized. Sometimes romanticization of illness bears terrific fruit--by which you can enjoy the taste of bittersweet songs, arrival of spiritual insights, and so forth.
And sometimes, you just can't see it any pretty way at all.
Thursday, September 17, 2009
Going to Duke this coming Monday, not Tuesday
We have to go in earlier than we thought, so we are leaving here Monday afternoon, and staying in a hotel (a Hilton--whee!) near Duke Hospital on Monday night, and Tuesday night, and Wednesday night. The surgery is still on Wednesday--won't get the actual surgery time told to us until late Tuesday afternoon--but we have to meet the anesthesiologist people at 7:45 a.m. Tuesday morning. Oy. Poor Bill teaches till 5 on Monday at Appalachian, then jumps in the car for 3 hours to Durham, then plunges back into the clinic scene at dawn Tuesday. I'd be curled up under a chair whimpering in Serbo-Croatian if I were him, but he just plugs along cheerfully. I guess he'll finally get some good rest when they knock him out for the surgery.
More soon! Thanks for following this!
More soon! Thanks for following this!
Wednesday, September 16, 2009
The Heart of Life
From "The Heart of Life" by John Mayer:
You know it's nothing new
Bad news never had good timing
But the circle of your friends
Will defend the silver lining
Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But i know the heart of life is good
Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But i know the heart of life is good.
I know it's good.
You know it's nothing new
Bad news never had good timing
But the circle of your friends
Will defend the silver lining
Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But i know the heart of life is good
Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But i know the heart of life is good.
I know it's good.
Duke University--Trip #1
First, THANK YOU, each one and every one, for your loving thoughts and prayers for us. We are truly feeling the effects! Bill probably never knew how loved he was until now, through you! It's SUCH a comfort. Thank you, thank you.
Duke Trip Number 1
It was a 12-hour round-trip adventure yesterday, 9:30 am to 9:30 pm, but we're so glad we live so close to Duke (in the top ten facilities in the world for cancer, and the facility Ted Kennedy chose). It's only a three-hour drive to Durham, exactly, and not a difficult drive. And we have PRECIOUS neighbors who helped watch our dogs, which was a huge, huge relief to us.
Our visit mainly entailed meeting our surgeon, finding out what happens next, and having vast quantities of Bill's various bodily liquids handed over to strangers in various separate clinics. :)
We LOVE LOVE LOVE our surgeon! It is an unbelievable blessing that he accepted us as patients, as he is a major player in Urological Oncology--a chemist, a doctor of biochemistry, an MD, a professor of urological surgery at Duke, a professor of pathology at Duke, overseer of clinical trials at Duke, and a urological oncological surgeon at Duke, educated at Michigan, Duke, and residency at UCLA. His resume is here.
Not too shabby. :)
He (Dr. Philip Walther) was funny, friendly, warm, kind, compassionate, unrushed, talkative AND, if you can believe this--he's from Wisconsin! He's a huge Packer fan, and he and Bill got going on that subject. Tiny world.
We got almost no information at all from him about Bill's cancer status--he wouldn't speculate, even though I tried to get him to--and says he will know nothing until he takes the tumor out, scrapes the bladder, and gets the pathology reports back. Then we find out what our fight will entail.
He will be doing a transurethral bladder resection, which you can learn about here, if you are so inclined, and not dining at this time.
The best thing he said was that he was "not at all convinced" that Bill has a "urachal adenocarcinoma"--a very bad thing to have--and that Bill might simply have the common kind of bladder cancer that 90 percent of bladder cancers comprise--transitional cell carcinoma. You guessed it. You can read about that here, if you are interested.
PLAN
This coming Tuesday, we go back to Duke and meet the anesthesiologist, spending Tuesday night in a hotel. Wednesday morning (assuming Bill's appointment is confirmed--we find out tomorrow), Bill gets the procedure by Dr. Walther, then stays in the hospital Wednesday night and comes home on Thursday.
WHAT THE DUKE CLINICS WERE LIKE, IF YOU'RE CURIOUS
The Duke Clinics were fabulously organized, but what a sad insight we got into the world of so many cancer victims. Appearance-wise, each clinic (one for blood work, one for chemo, one for seeing doctors, one for every separate thing)looks EXACTLY like a gate at an airport, with a reception desk, and rows and rows of chairs. But each clinic seating area was JAM PACKED with people, most of whom were in visually terrible condition. Several of the clinics were so crowded, there was standing room only, and the people looked sooooooooo sick. From 20-year-olds up to very old, and such a variety--fat, thin, male, female, rich-looking, poor-looking, all races, even a pregnant lady. It was a shocking sight. All I wanted to do was spend the rest of my life helping them all somehow. It was grippingly heartbreaking!
But there was never more than a 30-second wait for us at each clinic we had to go to, and we were treated wonderfully by everyone.
IRONY
So much cancer is caused by tobacco, and Duke treats so many cancer victims, yet the whole Duke situation was funded by tobacco money--Durham being the tobacco capitol of the south. Kind of weird, eh?
SO, YEAH
So yeah. That's the update. Thanks for caring enough to read this blog thing. I hope you don't find our adventure upsetting, but more informative, even calming. Cancer seems 100% terrifying when it's out there circling like a shark, and you feel like it might grab you at any second, but once you get into the cancer world, you see that there's a lot more hope and a lot more options than you ever imagined. Not to say that there are no sad endings, but before this experience, I kind of naively thought ALL cancer endings HAD to be tragic, whenEVER someone got a diagnosis of cancer, but now I see that a huge number of people make it through safely and are completely cured.
And even for the ones who don't, there is beauty and love and light and surprise sprinkled in the most unexpected places.
GRATUITOUS LECTURE
Listen to me: don't use tobacco. Do NOT NOT NOT NOT do it. It IS a circling shark, and it IS looking for YOU.
Duke Trip Number 1
It was a 12-hour round-trip adventure yesterday, 9:30 am to 9:30 pm, but we're so glad we live so close to Duke (in the top ten facilities in the world for cancer, and the facility Ted Kennedy chose). It's only a three-hour drive to Durham, exactly, and not a difficult drive. And we have PRECIOUS neighbors who helped watch our dogs, which was a huge, huge relief to us.
Our visit mainly entailed meeting our surgeon, finding out what happens next, and having vast quantities of Bill's various bodily liquids handed over to strangers in various separate clinics. :)
We LOVE LOVE LOVE our surgeon! It is an unbelievable blessing that he accepted us as patients, as he is a major player in Urological Oncology--a chemist, a doctor of biochemistry, an MD, a professor of urological surgery at Duke, a professor of pathology at Duke, overseer of clinical trials at Duke, and a urological oncological surgeon at Duke, educated at Michigan, Duke, and residency at UCLA. His resume is here.
Not too shabby. :)
He (Dr. Philip Walther) was funny, friendly, warm, kind, compassionate, unrushed, talkative AND, if you can believe this--he's from Wisconsin! He's a huge Packer fan, and he and Bill got going on that subject. Tiny world.
We got almost no information at all from him about Bill's cancer status--he wouldn't speculate, even though I tried to get him to--and says he will know nothing until he takes the tumor out, scrapes the bladder, and gets the pathology reports back. Then we find out what our fight will entail.
He will be doing a transurethral bladder resection, which you can learn about here, if you are so inclined, and not dining at this time.
The best thing he said was that he was "not at all convinced" that Bill has a "urachal adenocarcinoma"--a very bad thing to have--and that Bill might simply have the common kind of bladder cancer that 90 percent of bladder cancers comprise--transitional cell carcinoma. You guessed it. You can read about that here, if you are interested.
PLAN
This coming Tuesday, we go back to Duke and meet the anesthesiologist, spending Tuesday night in a hotel. Wednesday morning (assuming Bill's appointment is confirmed--we find out tomorrow), Bill gets the procedure by Dr. Walther, then stays in the hospital Wednesday night and comes home on Thursday.
WHAT THE DUKE CLINICS WERE LIKE, IF YOU'RE CURIOUS
The Duke Clinics were fabulously organized, but what a sad insight we got into the world of so many cancer victims. Appearance-wise, each clinic (one for blood work, one for chemo, one for seeing doctors, one for every separate thing)looks EXACTLY like a gate at an airport, with a reception desk, and rows and rows of chairs. But each clinic seating area was JAM PACKED with people, most of whom were in visually terrible condition. Several of the clinics were so crowded, there was standing room only, and the people looked sooooooooo sick. From 20-year-olds up to very old, and such a variety--fat, thin, male, female, rich-looking, poor-looking, all races, even a pregnant lady. It was a shocking sight. All I wanted to do was spend the rest of my life helping them all somehow. It was grippingly heartbreaking!
But there was never more than a 30-second wait for us at each clinic we had to go to, and we were treated wonderfully by everyone.
IRONY
So much cancer is caused by tobacco, and Duke treats so many cancer victims, yet the whole Duke situation was funded by tobacco money--Durham being the tobacco capitol of the south. Kind of weird, eh?
SO, YEAH
So yeah. That's the update. Thanks for caring enough to read this blog thing. I hope you don't find our adventure upsetting, but more informative, even calming. Cancer seems 100% terrifying when it's out there circling like a shark, and you feel like it might grab you at any second, but once you get into the cancer world, you see that there's a lot more hope and a lot more options than you ever imagined. Not to say that there are no sad endings, but before this experience, I kind of naively thought ALL cancer endings HAD to be tragic, whenEVER someone got a diagnosis of cancer, but now I see that a huge number of people make it through safely and are completely cured.
And even for the ones who don't, there is beauty and love and light and surprise sprinkled in the most unexpected places.
GRATUITOUS LECTURE
Listen to me: don't use tobacco. Do NOT NOT NOT NOT do it. It IS a circling shark, and it IS looking for YOU.
Tuesday, September 15, 2009
Update tomorrow! Pretty good news!
Full update tomorrow. We're both home, and we had a great time, LOVE the surgeon, and heard better news than we were ready for. Will write details tomorrow. Super tired. THANK YOU for your thoughts and prayers and love! A million hugs and kisses! Beth and Bill
Friday, September 11, 2009
We finally got the radiology report! Pretty good news.
After several phone calls and a ten-day wait, we finally got a faxed copy of the radiology report. And we THINK it's good, but it's really pretty darned encrypted, apparently in the radiological language equivalent of Klingon.
Disappointingly, it was really, really, really short, as in two small paragraphs, so we aren't brimming with detailed information. But the dearth of info might be because a CT scan of just the abdomen (which is what Bill had) doesn't give anywhere near the amount of info as one would get from a whole-body detailed MRI.
But it's SOMETHING! And at least it SEEMED good to us, although I'm still googling at Nascar speeds through all the terms, trying to figure out if the report is really as good as it seems.
They don't give stages, and they don't tell about invasions, if any, and they don't tell what kind of tumor it is.
But they DO go through the major organs in the abdomen and tell what they see. (For you English majors, it's all written in passive voice, which gives the impression of great legal timidity on the part of the radiologist--like he doesn't want to commit to whether he actually was or wasn't there while he was reading the scan. "No upper intestine lesion is observed." "No aneurysm is identified.")
Anyway, what you want is not my nonsense.
So here's the summary:
He did see the "mass in the dome of the bladder. Malignancy to be excluded." At first we thought that meant they were excluding malignancy, but then we realized he means that a biopsy is the only way to determine malignancy. (That gave us a happy thrill though for about 30 seconds.)
He did find two cysts, one in the liver and one in the kidney. That would scare you at first, but he writes that they are "circumscribed and nonenhancing" and my reading on those two words has been nothing but comforting, so I don't think he suspects trouble.
He also found an "arteriosclerotic calcification adjacent to the uncinate portion of the pancreas" which sounded freaky, but my googling leads me to believe that's just that Bill has plaque in an artery near or against the pancreas.
He also doesn't "identify suspicious retroperitoneal adenopathy" or "pathologic pelvic adenopathy" which I'm pretty sure means nothing spooky going on in Bill's peritoneum/pelvic area. HUGE relief!
The scariest part of the report was where they repeated what the urologist wrote, before the radiologist gave his opinion lower down on the page. The urologist wrote "large necrotic tumor near dome of bladder, questionable adenocarcinoma of bladder with possible extension into wall of bladder. Left renal (kidney) cyst." On his other report, the urologist wrote, "Very suggestive of possible urachal involvement."
If anyone thinks they could help in some way (or if it would help you in some way) if they had a full copy of the radiology report or the urology report, let me know, and I'll ask Bill if it's okay to send it to you.
We'll know more after our visit to Duke this coming Tuesday, the 15th. I'll post before then if we find out more, too.
Thank you beyond all words for your emails and cards and sweet phone calls and everything else! We'll write back very soon. Right now, we're just calming ourselves from ten horrible days of looking down the barrel of a big, big shotgun, and thanking heaven for all the ways the shotgun situation now seems so much better than it could have been.
Asteroid showers of love to each one of you for caring about dear Bill.
Disappointingly, it was really, really, really short, as in two small paragraphs, so we aren't brimming with detailed information. But the dearth of info might be because a CT scan of just the abdomen (which is what Bill had) doesn't give anywhere near the amount of info as one would get from a whole-body detailed MRI.
But it's SOMETHING! And at least it SEEMED good to us, although I'm still googling at Nascar speeds through all the terms, trying to figure out if the report is really as good as it seems.
They don't give stages, and they don't tell about invasions, if any, and they don't tell what kind of tumor it is.
But they DO go through the major organs in the abdomen and tell what they see. (For you English majors, it's all written in passive voice, which gives the impression of great legal timidity on the part of the radiologist--like he doesn't want to commit to whether he actually was or wasn't there while he was reading the scan. "No upper intestine lesion is observed." "No aneurysm is identified.")
Anyway, what you want is not my nonsense.
So here's the summary:
He did see the "mass in the dome of the bladder. Malignancy to be excluded." At first we thought that meant they were excluding malignancy, but then we realized he means that a biopsy is the only way to determine malignancy. (That gave us a happy thrill though for about 30 seconds.)
He did find two cysts, one in the liver and one in the kidney. That would scare you at first, but he writes that they are "circumscribed and nonenhancing" and my reading on those two words has been nothing but comforting, so I don't think he suspects trouble.
He also found an "arteriosclerotic calcification adjacent to the uncinate portion of the pancreas" which sounded freaky, but my googling leads me to believe that's just that Bill has plaque in an artery near or against the pancreas.
He also doesn't "identify suspicious retroperitoneal adenopathy" or "pathologic pelvic adenopathy" which I'm pretty sure means nothing spooky going on in Bill's peritoneum/pelvic area. HUGE relief!
The scariest part of the report was where they repeated what the urologist wrote, before the radiologist gave his opinion lower down on the page. The urologist wrote "large necrotic tumor near dome of bladder, questionable adenocarcinoma of bladder with possible extension into wall of bladder. Left renal (kidney) cyst." On his other report, the urologist wrote, "Very suggestive of possible urachal involvement."
If anyone thinks they could help in some way (or if it would help you in some way) if they had a full copy of the radiology report or the urology report, let me know, and I'll ask Bill if it's okay to send it to you.
We'll know more after our visit to Duke this coming Tuesday, the 15th. I'll post before then if we find out more, too.
Thank you beyond all words for your emails and cards and sweet phone calls and everything else! We'll write back very soon. Right now, we're just calming ourselves from ten horrible days of looking down the barrel of a big, big shotgun, and thanking heaven for all the ways the shotgun situation now seems so much better than it could have been.
Asteroid showers of love to each one of you for caring about dear Bill.
Thursday, September 10, 2009
W-A-I-T-I-N-G STILLLLLLLLL!
Ay yi yi.
I guess the medical profession can spot Cancer Newbies a mile away.
Newbies to the cancer world are the people who think that they should receive test results within, say, a flipping WEEK, so that they can, say, SLEEP AND EAT AND EXIST due to having received the TEST RESULTS that deal with the FUTURE EXISTENCE of their loved ones.
We were newbies, but we have now officially been changed.
We are becoming Experienced Cancer Victims now. Waiting TEN DICKENSIAN DAYS for the radiology interpretation of a CT scan? No big deal. Hey, life's a blast! What's the big deal about receiving a little report on the future of your very existence?
(((Subtext: AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! HELP! HELP!))))
Tomorrow will be DAY TEN of waiting for a report on the results of a CT scan of Bill's abdomen.
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
SOMETIME tomorrow--we naively and stupidly hope and actually THINK--we will get a fax of the radiology report.
Then again, given stolen hospital hard drives, broken urologists' computers, dueling banjos, and a mountain location accessible only by 4-wheel-drive trucks and semis loaded with moonshine, what are we really THINKING, expecting to hear anything by Friday???????
I guess the medical profession can spot Cancer Newbies a mile away.
Newbies to the cancer world are the people who think that they should receive test results within, say, a flipping WEEK, so that they can, say, SLEEP AND EAT AND EXIST due to having received the TEST RESULTS that deal with the FUTURE EXISTENCE of their loved ones.
We were newbies, but we have now officially been changed.
We are becoming Experienced Cancer Victims now. Waiting TEN DICKENSIAN DAYS for the radiology interpretation of a CT scan? No big deal. Hey, life's a blast! What's the big deal about receiving a little report on the future of your very existence?
(((Subtext: AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! HELP! HELP!))))
Tomorrow will be DAY TEN of waiting for a report on the results of a CT scan of Bill's abdomen.
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
SOMETIME tomorrow--we naively and stupidly hope and actually THINK--we will get a fax of the radiology report.
Then again, given stolen hospital hard drives, broken urologists' computers, dueling banjos, and a mountain location accessible only by 4-wheel-drive trucks and semis loaded with moonshine, what are we really THINKING, expecting to hear anything by Friday???????
Tuesday, September 8, 2009
Still waiting, but...
And STILLLLLLL we wait for the radiologist report.
It's 6 days till we go to Duke, though, so at least we won't have to wait so much more than that.
We ended up with a printed report on the CT scan, but only from the urologist, who is only allowed, apparently, to speculate on the scan results. There were quite a few words I didn't know, and unfamiliar terms in the report. I googled them, and sort of wish I hadn't, as they opened up whole new vistas of scary possibilities I hadn't even thought of.
Result: a whole day of crying on my part, today, from the something-under-the-bed-might-jump-out-at-you spooky ugliness of the whole situation. I can't stop. But by tomorrow should be better.
Bill is pretty even-keeled, even cheery, so that's a huge blessing.
I'll write the SECOND we hear from the radiologist.
If you've written us a gorgeous, beautiful note lately and haven't heard back, please forgive me for my slowness but KNOW FOR ABSOLUTELY CERTAIN that your words of love are pretty much--seriously--what we are living on right now, and our gratitude is profound. Profound. Thank you, and we WILL write back as soon as we can.
It's 6 days till we go to Duke, though, so at least we won't have to wait so much more than that.
We ended up with a printed report on the CT scan, but only from the urologist, who is only allowed, apparently, to speculate on the scan results. There were quite a few words I didn't know, and unfamiliar terms in the report. I googled them, and sort of wish I hadn't, as they opened up whole new vistas of scary possibilities I hadn't even thought of.
Result: a whole day of crying on my part, today, from the something-under-the-bed-might-jump-out-at-you spooky ugliness of the whole situation. I can't stop. But by tomorrow should be better.
Bill is pretty even-keeled, even cheery, so that's a huge blessing.
I'll write the SECOND we hear from the radiologist.
If you've written us a gorgeous, beautiful note lately and haven't heard back, please forgive me for my slowness but KNOW FOR ABSOLUTELY CERTAIN that your words of love are pretty much--seriously--what we are living on right now, and our gratitude is profound. Profound. Thank you, and we WILL write back as soon as we can.
Friday, September 4, 2009
We got at least one bit of information!
I think the nurse had mercy on me and somehow got the radiologist to at least take a quick initial look at the CT scan, and then she asked our urologist if he agreed.
The good news seems to be that Bill's tumor has NOT broken through the wall of the bladder, "as far as they can see right now." The urologist said it looks like that to him, too.
It is into the wall of the bladder, apparently "up against" the outer wall, but not broken through to the outside.
If this is correct, then Bill is definitely not in stage 4, which requires a complete break-through.
Now I'm desperately praying that it WON'T break through while we wait for the appointment on Sept. 15th.
I was not able to get any more information from the nurse.
Except this next point, which is the most bizarre thing of all, so far: the nurse said that the clinic's "hard drive got stolen" and that's what the problem is. She even said, "Maybe some of the radiology reports were on there, and that contributed to the problem."
Okay, I'm sane, but this whole story of the urology computer situation is like a Salvadore Dali painting, isn't it? The hard drive GOT STOLEN? Was it backed up? Are all the CT scans lost? What the DICKENS?????????????
Anyway, in a saner vein, we also got the packet of information from Duke by mail today, and it mainly talked about how we have to have his records sent there BEFORE we arrive, or we can't have a consultation when we get there. Yikes! I hope all his records weren't on the stolen hard drive. What in the WORLD is going on!?
Anyway, the Duke packet listed hotels and showed a map, but it didn't say whether he might go in for surgery on the next day or anything like that.
So next week, we should get the complete radiology report, assuming it's not sitting in a pawn shop somewhere, and I will post that, no matter what it says. So if I haven't posted it, it just means we didn't get it yet. It doesn't mean it was so upsetting that we couldn't post it. I WILL post it!
Not sure this is the greatest place to be, in America, for serious illnesses.
Tee shirts down here say: "Paddle faster! I hear banjos!"
I hope the radiologist wasn't recruited from a rocking chair on a porch somewhere.
Love,
Beth
The good news seems to be that Bill's tumor has NOT broken through the wall of the bladder, "as far as they can see right now." The urologist said it looks like that to him, too.
It is into the wall of the bladder, apparently "up against" the outer wall, but not broken through to the outside.
If this is correct, then Bill is definitely not in stage 4, which requires a complete break-through.
Now I'm desperately praying that it WON'T break through while we wait for the appointment on Sept. 15th.
I was not able to get any more information from the nurse.
Except this next point, which is the most bizarre thing of all, so far: the nurse said that the clinic's "hard drive got stolen" and that's what the problem is. She even said, "Maybe some of the radiology reports were on there, and that contributed to the problem."
Okay, I'm sane, but this whole story of the urology computer situation is like a Salvadore Dali painting, isn't it? The hard drive GOT STOLEN? Was it backed up? Are all the CT scans lost? What the DICKENS?????????????
Anyway, in a saner vein, we also got the packet of information from Duke by mail today, and it mainly talked about how we have to have his records sent there BEFORE we arrive, or we can't have a consultation when we get there. Yikes! I hope all his records weren't on the stolen hard drive. What in the WORLD is going on!?
Anyway, the Duke packet listed hotels and showed a map, but it didn't say whether he might go in for surgery on the next day or anything like that.
So next week, we should get the complete radiology report, assuming it's not sitting in a pawn shop somewhere, and I will post that, no matter what it says. So if I haven't posted it, it just means we didn't get it yet. It doesn't mean it was so upsetting that we couldn't post it. I WILL post it!
Not sure this is the greatest place to be, in America, for serious illnesses.
Tee shirts down here say: "Paddle faster! I hear banjos!"
I hope the radiologist wasn't recruited from a rocking chair on a porch somewhere.
Love,
Beth
No report yet, and you won't believe why not...
Well, I couldn't stand waiting so I called and asked for medical records to try to at least avoid an answering machine.
I got a really, REALLY nice nurse, who talked to me at length, but...
Guess why we haven't heard a word from the radiologist!
Because the urology office HASN'T EVEN SENT THE CT SCAN TO THE RADIOLOGIST YET!
They apologized that their "machine has been down for three days," and they haven't been able to send anyone's CT scans to the radiologist in all that time.
I told her I didn't know how we could continue to breathe for a whole weekend without any word, and she was very understanding. She said she felt terrible for us and was going to try to personally find out something, even if only the stage, without all the other details for now.
For Pete's sake! I could go over there and WALK THE CT SCAN DISC over to the hospital. It's ONE BLOCK!
Again, we feel like we're in a dream. This is just so bizarre, it's impossible to believe it.
Bill, however, is delighted at this result. I'm not kidding! He says he is feeling happy and normal, and was dreading getting the report anyway. Now he can have a nice weekend, he says.
I know everyone has his own way of dealing with things, but I'm at the other end of the spectrum. Still, I respect his process.
But, wow.
I got a really, REALLY nice nurse, who talked to me at length, but...
Guess why we haven't heard a word from the radiologist!
Because the urology office HASN'T EVEN SENT THE CT SCAN TO THE RADIOLOGIST YET!
They apologized that their "machine has been down for three days," and they haven't been able to send anyone's CT scans to the radiologist in all that time.
I told her I didn't know how we could continue to breathe for a whole weekend without any word, and she was very understanding. She said she felt terrible for us and was going to try to personally find out something, even if only the stage, without all the other details for now.
For Pete's sake! I could go over there and WALK THE CT SCAN DISC over to the hospital. It's ONE BLOCK!
Again, we feel like we're in a dream. This is just so bizarre, it's impossible to believe it.
Bill, however, is delighted at this result. I'm not kidding! He says he is feeling happy and normal, and was dreading getting the report anyway. Now he can have a nice weekend, he says.
I know everyone has his own way of dealing with things, but I'm at the other end of the spectrum. Still, I respect his process.
But, wow.
STILL waiting!
We are still waiting for the radiology report. I put in a call to try to hurry it along, and all I could get was a nurse's answering machine. Holy cow!
Well, we SURE do hope they tell us something before the weekend! I've run out of fingernails to chew off.
I will post here immediately after we learn about it, no matter what it says.
Thank you for caring--thank you soooooooooooooo extremely much.
Well, we SURE do hope they tell us something before the weekend! I've run out of fingernails to chew off.
I will post here immediately after we learn about it, no matter what it says.
Thank you for caring--thank you soooooooooooooo extremely much.
Wednesday, September 2, 2009
No Duke University till Sept. 15??? Yikes!
Today we got the call that the earliest we can be seen at Duke University is Tuesday, Sept. 15 in the afternoon. That seems like a long time from now, if the tumor is as bad as the Urologist thought.
So our plan now is to wait another day until the radiologist gives a full report on the CT scan findings, and if the tumor is really the vicious kind we suspect, then we are going to call the Duke guy's office until we get in on a cancellation. I ain't waitin around for two weeks for the shoe to drop!
Our kids are all flying/driving in to be with us this weekend for a last hurrah to celebrate the old days of health and to be together one good time before whatever we are facing next. Bill is delighted and feels great.
It's a huge blessing that his only pain is a little twinge in his abdomen. It could be SO much worse!
S.C. came by this morning to tell us how to face this all with faith. He has had 22 operations for cancer, including brain cancer, and is now completely healed. It was as exciting around here as an old timey tent revival. Even the puppies were jumping all over the place. ;)
The craziest stuff happens when the craziest stuff happens.
Love,
Beth
So our plan now is to wait another day until the radiologist gives a full report on the CT scan findings, and if the tumor is really the vicious kind we suspect, then we are going to call the Duke guy's office until we get in on a cancellation. I ain't waitin around for two weeks for the shoe to drop!
Our kids are all flying/driving in to be with us this weekend for a last hurrah to celebrate the old days of health and to be together one good time before whatever we are facing next. Bill is delighted and feels great.
It's a huge blessing that his only pain is a little twinge in his abdomen. It could be SO much worse!
S.C. came by this morning to tell us how to face this all with faith. He has had 22 operations for cancer, including brain cancer, and is now completely healed. It was as exciting around here as an old timey tent revival. Even the puppies were jumping all over the place. ;)
The craziest stuff happens when the craziest stuff happens.
Love,
Beth
P.S. About blogs
A friend sent this idea. If you want to write to Bill or to me (it's okay to communicate with Bill now, as he's feeling better, and if he's not, some days, he will send you to me)and yet you don't want to use blog comments, just email him or me, if that's easier for you.
Secondly, if you know someone (or people) who should know about Bill, you have his permission to share his news and this blog or his email. At first he wasn't ready to do that, but now it's okay, especially where prayers would result, such as from prayer chains or groups and such.
Faith, hope, and love.
Beth
Secondly, if you know someone (or people) who should know about Bill, you have his permission to share his news and this blog or his email. At first he wasn't ready to do that, but now it's okay, especially where prayers would result, such as from prayer chains or groups and such.
Faith, hope, and love.
Beth
Tuesday, September 1, 2009
Tuesday September 1 Adventure
This entry will be short because we want to get the news out before the night ends.
We thought a blog would be a good way to do this, as you can read it or not, as you wish, and leave comments, and won't have me emailing the living starch right out of you (me=Beth). This leaves the choice with you as to how much info you want.
So today, Bill had his CT scan with Dr. Pitts in Boone.
The results could have been a lot better, but a little bit worse.
Backstory: Friday (four days ago) Bill was diagnosed with a bladder tumor in the top (dome or superior wall) of his bladder. The first diagnostic step after that is a CT scan to find out more about the tumor.
So today he had his CT scan, which took about an hour and involved drinking a bunch of weird milky gradoo out of a glass bottle.
The results are not definitive until a radiologist at the Medical Center reads the scan, but the urologist, after many years in his specialty, suspects strongly that Bill might have one of the most aggressive forms of bladder cancer, and the rarest.
It is called adenocarcinoma and is on the urachal point, where the remnants of the umbilical cord connect to the top of the bladder. It might even be called urachal adenocarcinoma, but I'm not sure. You can google it for details.
Anyway, the doctor is also worried that the CT scan appeared to show that the tumor may have broken through the wall of his bladder, but he's not sure of that, either, or about spreading or what stage the cancer is. That's for the radiologist, pathologist, whatever-ist.
Ultimately, however, this urologist does not want to work with this rare kind of cancer, and is referring Bill to the top urology oncology center in the US: Duke University, to the top surgeon. This surgeon has completely cured people of this exact kind of cancer, and we have reason for optimism. Cures have been effected even without total removal of the bladder, just removal of the cancerous portion.
So now we wait.
We wait for the radiology report to give more details on the kind of cancer, and we wait to hear when we will go to Duke to meet the Big Dude of Bladders.
We will post the next bit of information here as soon as we get it.
Bill's mood is calm and optimistic, but we both had our minds warped by the news that it might be this crazy kind of cancer. More than 90 percent of bladder cancers are non-theatrical, calm little treatable things. We kind of expected to hear that it was that. But no. This type is so rare that the urology websites say some urologists never encounter it even once in their entire lifetime of practice!
I'm using THOSE numbers to say that mathematically, the chances are that Bill does NOT have that type.
Anyway, God bless our children and our angelic neighbors who are all working together to come here and help us out, including helping with our three little dogs while we are at Duke.
And God bless the friends of ours who have written us these gorgeous, loving emails, and who have taught us a BAM Right in the Head lesson about what stunning effects human love can have on a dark night.
And God bless GOD who has shown us that He can appear at the most unlikely places in the most unlikely ways with the most amazing timing.
Thanks for reading this and for caring about Bill. Please pray for him or think good thoughts or beam him light or whatever you do. He can feel it. Thank you, thank you.
Love,
Beth
We thought a blog would be a good way to do this, as you can read it or not, as you wish, and leave comments, and won't have me emailing the living starch right out of you (me=Beth). This leaves the choice with you as to how much info you want.
So today, Bill had his CT scan with Dr. Pitts in Boone.
The results could have been a lot better, but a little bit worse.
Backstory: Friday (four days ago) Bill was diagnosed with a bladder tumor in the top (dome or superior wall) of his bladder. The first diagnostic step after that is a CT scan to find out more about the tumor.
So today he had his CT scan, which took about an hour and involved drinking a bunch of weird milky gradoo out of a glass bottle.
The results are not definitive until a radiologist at the Medical Center reads the scan, but the urologist, after many years in his specialty, suspects strongly that Bill might have one of the most aggressive forms of bladder cancer, and the rarest.
It is called adenocarcinoma and is on the urachal point, where the remnants of the umbilical cord connect to the top of the bladder. It might even be called urachal adenocarcinoma, but I'm not sure. You can google it for details.
Anyway, the doctor is also worried that the CT scan appeared to show that the tumor may have broken through the wall of his bladder, but he's not sure of that, either, or about spreading or what stage the cancer is. That's for the radiologist, pathologist, whatever-ist.
Ultimately, however, this urologist does not want to work with this rare kind of cancer, and is referring Bill to the top urology oncology center in the US: Duke University, to the top surgeon. This surgeon has completely cured people of this exact kind of cancer, and we have reason for optimism. Cures have been effected even without total removal of the bladder, just removal of the cancerous portion.
So now we wait.
We wait for the radiology report to give more details on the kind of cancer, and we wait to hear when we will go to Duke to meet the Big Dude of Bladders.
We will post the next bit of information here as soon as we get it.
Bill's mood is calm and optimistic, but we both had our minds warped by the news that it might be this crazy kind of cancer. More than 90 percent of bladder cancers are non-theatrical, calm little treatable things. We kind of expected to hear that it was that. But no. This type is so rare that the urology websites say some urologists never encounter it even once in their entire lifetime of practice!
I'm using THOSE numbers to say that mathematically, the chances are that Bill does NOT have that type.
Anyway, God bless our children and our angelic neighbors who are all working together to come here and help us out, including helping with our three little dogs while we are at Duke.
And God bless the friends of ours who have written us these gorgeous, loving emails, and who have taught us a BAM Right in the Head lesson about what stunning effects human love can have on a dark night.
And God bless GOD who has shown us that He can appear at the most unlikely places in the most unlikely ways with the most amazing timing.
Thanks for reading this and for caring about Bill. Please pray for him or think good thoughts or beam him light or whatever you do. He can feel it. Thank you, thank you.
Love,
Beth
Subscribe to:
Posts (Atom)
