Sorry to everyone who was annoyed/worried/baffled by my lack of follow-up on the pleural effusion story. Anyway, the thing was drained and recovery from that point on was normal.
We just got back from Rochester, having Sherri's three month follow-up and scan. Everything went fine. The docs are satisfied with the progress of her recovery. And most importantly the CT scan was clear, so we've dodge the recurrence problem for the first quarter.
Sherri's back at work and school as normal, but with much more energy and an overall more healthy aura.
GW
Friday, August 10, 2007
Tuesday, June 5, 2007
And Then You Get a Popsicle
DToday's consult was not quite what we were hoping for.
The surgeon says that her pleural effusion has gotten larger over the last week, and he believes there is no longer a reason to hope that it will clear up on its own.
He is trying to schedule a thoracentesis (procedure to extract the fluid from the lining of the lungs) for tomorrow or Thursday. At the moment we believe this procedure will be done at Jewish Hospital--Kenwood.
Unfortunately, the doc's secretary (or whomever she is) appears to be dragging her feet on scheduling the procedure because I pissed her off in our appointment. How is not important--what is important, though, is that things are back to normal enough that Sherri's the nice one, and I'm the asshole again. This must be incredibly soothing to the fabric of space-time.
UPDATE: The procedure is scheduled for Friday morning, 10:30, Jewish Hospital--Kenwood.
The surgeon says that her pleural effusion has gotten larger over the last week, and he believes there is no longer a reason to hope that it will clear up on its own.
He is trying to schedule a thoracentesis (procedure to extract the fluid from the lining of the lungs) for tomorrow or Thursday. At the moment we believe this procedure will be done at Jewish Hospital--Kenwood.
Unfortunately, the doc's secretary (or whomever she is) appears to be dragging her feet on scheduling the procedure because I pissed her off in our appointment. How is not important--what is important, though, is that things are back to normal enough that Sherri's the nice one, and I'm the asshole again. This must be incredibly soothing to the fabric of space-time.
UPDATE: The procedure is scheduled for Friday morning, 10:30, Jewish Hospital--Kenwood.
Wednesday, May 30, 2007
Life is Complicated
I hope you'll all take it as good news that I haven't been posting (remember what I said about the hubris discomfort?) but here's a little mini-update:
Things were clipping along just fine until Monday (Memorial Day) when I uttered the stupidest words ever: "I'm just so glad this has gone so smoothly with no complications."
By Monday night, Sherri was having pain in her back and chest, and by Wed. morning it was bad enough to take her to the ER at Jewish Hospital.We spent almost seven hours at the hospital to find that she has developed a pleural effusion, which is basically fluid in the lining of her lungs.
Since so many I've told this have already asked, let me answer in advance: Yes they gave her one of those lung exerciser thingies. But she still managed to develop this.
I would suggest that her pain was not managed as well as it could which made it difficult to get the full inflation of the lungs necessary to avoid this problem post op.
While this can be surgically drained--They basically stick a needle into the lung, collapsing it and then suck out the fluid--the docs are hoping that the fluid will be naturally reabsorbed and go away on its own. We have a surgical consult on Tuesday with a thoracic surgeon who will help us re-evaluate then.
For now she's in excruciating pain and not sleeping very well, but I have hope for this thing's clearing up.
Things were clipping along just fine until Monday (Memorial Day) when I uttered the stupidest words ever: "I'm just so glad this has gone so smoothly with no complications."
By Monday night, Sherri was having pain in her back and chest, and by Wed. morning it was bad enough to take her to the ER at Jewish Hospital.We spent almost seven hours at the hospital to find that she has developed a pleural effusion, which is basically fluid in the lining of her lungs.
Since so many I've told this have already asked, let me answer in advance: Yes they gave her one of those lung exerciser thingies. But she still managed to develop this.
I would suggest that her pain was not managed as well as it could which made it difficult to get the full inflation of the lungs necessary to avoid this problem post op.
While this can be surgically drained--They basically stick a needle into the lung, collapsing it and then suck out the fluid--the docs are hoping that the fluid will be naturally reabsorbed and go away on its own. We have a surgical consult on Tuesday with a thoracic surgeon who will help us re-evaluate then.
For now she's in excruciating pain and not sleeping very well, but I have hope for this thing's clearing up.
Wednesday, May 16, 2007
Tuesday, May 15, 2007
Reach the Beech
It's been a long day of blog silence, but now that everything has gone as well as we could have hoped and we're on our way home, each time I started to compose, it felt more and more like hubris to burden everyone with the details.
First, I know from the emails and texts that there's some concern about how we're getting home, and some of you have been doing some really lovely research to help us out, but the winner of this one is Susan Engeleiter of Data Recognition Corp., who is sending the company's jet to pick us up right here in Rochester tomorrow morning and deposit us, more or less, right next to our car at CVG airport. It's one of the most generous things anyone has ever done for us, and I thank her profusely for her kindness. What can you say about a company that in a little more than three weeks, saves an employee's life and then deposits her on her safe and sound on her own doorstep?
We've been very lucky this time, and I hope we don't ever need this kind of luck again. To belabor our good fortune by turning this blog into too permanent a fixture in our lives seems. . .I don't know what it seems--nihilist that I am, it's difficult to put into words that don't misrepresent my belief system--for now let's just call it tempting fate, bad karma, whatever.
More and more, though, I've come to believe that our universe is nothing more than a machine, nestled in and functioning as a part of another greater machine, and while we will probably never know the purpose of the machine our universe serves, our universe exists for one reason: To create irony.
I used to comfort myself with the idea that bad people get appropriately punished for their badness and the good in the end will out. Mind you, I never really believed this--I simply comforted myself with the idea.
But let's be clear about what I'm talking about. You know that guy who passed you doing 110 mph on the highway this morning? He won't get the ticket. It'll be you. One day, you'll be rushing home from work, 8 mph over the speed limit, and you will fall prey to a trooper who needs one more ticket for his monthly quota. The speeder will be promoted at work and buy an even faster car, which will cause him to draw the attention of Ryan Freel in a parking lot one evening, and the utility man will give him a three games worth of box seats to the Reds homestand against the Indians. You, on the other hand will have two points on your license and miss the season finale of "Heroes."
I hope this doesn't sound bitter because that's not at all how I mean it. When you tell the story later to your friends, they will have real empathy with you, they'll buy you a drink, and rip you a copy of the show you missed off of their TiVo's, and in the long run, you'll eventually feel OK again.
And even this isn't fair because you know what? That speeder is probably speeding from something that feels way worse to him than your ticket or dorky TV schedule--it's just less ironic to you. Everyone's going through some bad shit all the time, and everyone's bad shit feels like it's being spit out of the irony machine, and the reason it feels that way is that they're exactly right.
Here's Sherri: She's a good person who's lived as close to a zero-risk lifestyle as anyone I've ever known, except maybe her mother (who still ended up with cancer, herself). Then take, for example, me: An almost complete bastard who's taken virtually every lifestyle risk available. Who gets cancer? Well, the more ironic choice, of course. Good job universe.
Years ago, that rabbi-dude wrote a soul-soother called Why Bad Things Happen to Good People. He didn't really need to write a whole book about something that can bee summed up in two bullet points:
1. Bad things are happening to everyone all the time
2. Everyone thinks he's too good for the stuff that happens to him
That's it.
The best we can ever hope for is to find a use for the information that the irony machine constantly spews at us, and as educators, Sherri and I tend to put things in terms of lessons learned. We've learned a tremendous amount about ourselves and our relationship from this experience. But just as importantly, we have learned about the strength of our village (this is what one of my favorite emailers called it). We've drawn so much strength from all of you that we can't imagine what would have happened if we had tried to do this without all of your support--from the people who gave up three weeks of their lives to help us out to the people who are covering for us at work, to the people who found ways to distract us when we needed it, to the people who offered us indispensible advice, left a kind voicemail, email, or blog comment.
There are so many things that we still need to evaluate honestly about our own past citizenship in our village, but we can also look toward the future. And here's what I know about that future: We will not ever be able to fully thank all of you for how you've helped us, but the irony machine's out there gunning for everyone, and while we hope you are not going to be its victim soon, when you need us, we'll be there.
I don't use the accident. I deny the accident.
--Jackson Pollock
GW
First, I know from the emails and texts that there's some concern about how we're getting home, and some of you have been doing some really lovely research to help us out, but the winner of this one is Susan Engeleiter of Data Recognition Corp., who is sending the company's jet to pick us up right here in Rochester tomorrow morning and deposit us, more or less, right next to our car at CVG airport. It's one of the most generous things anyone has ever done for us, and I thank her profusely for her kindness. What can you say about a company that in a little more than three weeks, saves an employee's life and then deposits her on her safe and sound on her own doorstep?
We've been very lucky this time, and I hope we don't ever need this kind of luck again. To belabor our good fortune by turning this blog into too permanent a fixture in our lives seems. . .I don't know what it seems--nihilist that I am, it's difficult to put into words that don't misrepresent my belief system--for now let's just call it tempting fate, bad karma, whatever.
More and more, though, I've come to believe that our universe is nothing more than a machine, nestled in and functioning as a part of another greater machine, and while we will probably never know the purpose of the machine our universe serves, our universe exists for one reason: To create irony.
I used to comfort myself with the idea that bad people get appropriately punished for their badness and the good in the end will out. Mind you, I never really believed this--I simply comforted myself with the idea.
But let's be clear about what I'm talking about. You know that guy who passed you doing 110 mph on the highway this morning? He won't get the ticket. It'll be you. One day, you'll be rushing home from work, 8 mph over the speed limit, and you will fall prey to a trooper who needs one more ticket for his monthly quota. The speeder will be promoted at work and buy an even faster car, which will cause him to draw the attention of Ryan Freel in a parking lot one evening, and the utility man will give him a three games worth of box seats to the Reds homestand against the Indians. You, on the other hand will have two points on your license and miss the season finale of "Heroes."
I hope this doesn't sound bitter because that's not at all how I mean it. When you tell the story later to your friends, they will have real empathy with you, they'll buy you a drink, and rip you a copy of the show you missed off of their TiVo's, and in the long run, you'll eventually feel OK again.
And even this isn't fair because you know what? That speeder is probably speeding from something that feels way worse to him than your ticket or dorky TV schedule--it's just less ironic to you. Everyone's going through some bad shit all the time, and everyone's bad shit feels like it's being spit out of the irony machine, and the reason it feels that way is that they're exactly right.
Here's Sherri: She's a good person who's lived as close to a zero-risk lifestyle as anyone I've ever known, except maybe her mother (who still ended up with cancer, herself). Then take, for example, me: An almost complete bastard who's taken virtually every lifestyle risk available. Who gets cancer? Well, the more ironic choice, of course. Good job universe.
Years ago, that rabbi-dude wrote a soul-soother called Why Bad Things Happen to Good People. He didn't really need to write a whole book about something that can bee summed up in two bullet points:
1. Bad things are happening to everyone all the time
2. Everyone thinks he's too good for the stuff that happens to him
That's it.
The best we can ever hope for is to find a use for the information that the irony machine constantly spews at us, and as educators, Sherri and I tend to put things in terms of lessons learned. We've learned a tremendous amount about ourselves and our relationship from this experience. But just as importantly, we have learned about the strength of our village (this is what one of my favorite emailers called it). We've drawn so much strength from all of you that we can't imagine what would have happened if we had tried to do this without all of your support--from the people who gave up three weeks of their lives to help us out to the people who are covering for us at work, to the people who found ways to distract us when we needed it, to the people who offered us indispensible advice, left a kind voicemail, email, or blog comment.
There are so many things that we still need to evaluate honestly about our own past citizenship in our village, but we can also look toward the future. And here's what I know about that future: We will not ever be able to fully thank all of you for how you've helped us, but the irony machine's out there gunning for everyone, and while we hope you are not going to be its victim soon, when you need us, we'll be there.
I don't use the accident. I deny the accident.
--Jackson Pollock
GW
Monday, May 14, 2007
Another quick update
We're out of the hospital, and Sherri is resting in bed at our hotel across the street. You gotta love a hospital in walking distance. . .and no, she didn't walk it. . .we have wheelchair for her, to which the surgical resident said not to get too attached. They want her walking as much as possible to make sure that her digestive organs, etc. are all convinced to function happily.
Whatever difficulties being out of the hospitals might bring, they should be nicely balanced by the absence of Heprin shots to the stomach three times a day, 3am wake ups for lab work, and evil Nurse Nancy, whom I'm pretty sure was assigned to us to make us want to leave faster.
As soon as she lets me, I want to post a profile picture of Sherri. Those of you who know her well will recognize her as wearing the body you knew her in five years agao. Those of you who don't will just take my word for it because I'm guessing she's not going to let me post the "before" picture at all. . .still, do not even attempt to try this one at home. . .seriously. . . worst diet plan ever.
Travel plans are still being firmed up. . .will report later.
Primary Care Giver to the Stars,
GW
Whatever difficulties being out of the hospitals might bring, they should be nicely balanced by the absence of Heprin shots to the stomach three times a day, 3am wake ups for lab work, and evil Nurse Nancy, whom I'm pretty sure was assigned to us to make us want to leave faster.
As soon as she lets me, I want to post a profile picture of Sherri. Those of you who know her well will recognize her as wearing the body you knew her in five years agao. Those of you who don't will just take my word for it because I'm guessing she's not going to let me post the "before" picture at all. . .still, do not even attempt to try this one at home. . .seriously. . . worst diet plan ever.
Travel plans are still being firmed up. . .will report later.
Primary Care Giver to the Stars,
GW
Busy Busy
Discharge today, return home Wed. More forthcoming.
______
This blog was posted from a handheld device.
Sunday, May 13, 2007
Hey, You Mothers!
Happy Mother's Day to all the mothers who've been reading this blog.
Well, I've had difficulty shopping for my Mom's Mother's Day present, so instead, I gave her the best thing I could think of instead--her flying papers back to Toledo. I haven't said much about the logistics of the last three weeks (or maybe I have--I don't remember), but we're now in day 20 of this little experience, and while Sherri and I have only been home for a day and half of the last three weeks, the same is true for my mother. . .worst vacation ever.
I know there are a bunch of people out there who have offered to help us with Emma during this time, and we know that you meant it and would have been great with her, but there's something about the comfort of Grandma that just can't quite be duplicated in a time that has been really stressful on the kid. And while a bunch of people could have taken care of her well, I'm not sure anyone could have managed her anxiety the way my mom has. She never made us feel as though she was being inconvenienced even though she was so hugely--her one opportunity to get home turned a three hour drive into a day's travel when she got a flat tire in Blufton, which appears to be a very cranky little town--and that's just one of the hassles she's endured. Thanking her seems ridiculous since this whole thing is something beyond thanks' ability to cover what her support has meant to us. So maybe it's validation that would be better expressed:
Hey Mom, you've done the 'mom' job as well as it could possibly be done in the last month--we're talking textbook "Giving Tree" stuff here, but without the creepy patina of guilt. I hope you never have to do anything like this again, but it's great to know we can count on you.
And I know it's not Father's Day yet, but I also need to thank my dad who, in the midst of his never ending recovery from back surgery as well as excruciating knee problems, found that perfect balance of being here when we needed him during the surgery while keeping the family business up and running without my mom in the store to carry the weight that she usually carries there as well. So he's been doing double duty in the worst of circumstances compounded by loneliness at home and my nastiness with him as I tried to handle the logistics of all of this.
Folks, never under-estimate the importance of having people in your life whom you can tell to take care of your shit but still leave you alone when you need it without being hurt, blow-up at and know that they'll cut you slack, even if you don't deserve it, and then take your for tapas when you need re-humanizing. If you don't have people like that in your life, I suggest you start looking for them post-haste.
This will go down as one of our oddest Mother's Days ever, of course. Normally, right now, we would be at Shapiro's Delicatessen in Indianapolis becoming joyously and uncomfortably cholesterol-poisoned and then on our way to our favorite vintage modern dealers, followed by club burgers and turtle sundaes in Shelbyville, IN at the remarkable Cow Palace whose ice cream rivals Graeter's, but I believe if you asked Sherri, she'd say it's better.
Oddly enough, in early April, Sherri said that she wanted to do something different from our traditional Indy Mother's Day trip. . .pretty sure she'd like to take that back now, dontcha think?
Now the weirdest and scariest part of the day today is that the docs are talking about releasing Sherri tomorrow or what sounds like Tuesday at the latest.
Now before you get indignant about this (Alison L., I'm looking at you), remember that the surgeon originally told us she'd be in hospital for 5-8 days. . .and this would put us on schedule; Also, this place appears to be full of sick people, so we don't really want to increase Sherri's risk of infection; Also some more, she wants the hell out of here; And also a little bit more, they keep giving us an evil day nurse who appears to have a chemically based disdain for Sherri that she's not even attempting to conceal or contain.
Don't worry, there's little chance that I'll fly out of here the same day as she's released. In fact, I won't fly with her before I feel completely comfortable that we are managing her pain and that I can see to her needs, so don't worry about that. We'll stay in the hotel a day or four if we have to. I'm also going to wait until we can get a direct flight out of Minneapolis because the idea of transferring planes in Chicago scares me, and just thinking about trying to do it in Detroit causes me to weep openly, which apparently disturbs Emma. . .
I'll update as soon as I get the haps.
GW
Well, I've had difficulty shopping for my Mom's Mother's Day present, so instead, I gave her the best thing I could think of instead--her flying papers back to Toledo. I haven't said much about the logistics of the last three weeks (or maybe I have--I don't remember), but we're now in day 20 of this little experience, and while Sherri and I have only been home for a day and half of the last three weeks, the same is true for my mother. . .worst vacation ever.
I know there are a bunch of people out there who have offered to help us with Emma during this time, and we know that you meant it and would have been great with her, but there's something about the comfort of Grandma that just can't quite be duplicated in a time that has been really stressful on the kid. And while a bunch of people could have taken care of her well, I'm not sure anyone could have managed her anxiety the way my mom has. She never made us feel as though she was being inconvenienced even though she was so hugely--her one opportunity to get home turned a three hour drive into a day's travel when she got a flat tire in Blufton, which appears to be a very cranky little town--and that's just one of the hassles she's endured. Thanking her seems ridiculous since this whole thing is something beyond thanks' ability to cover what her support has meant to us. So maybe it's validation that would be better expressed:
Hey Mom, you've done the 'mom' job as well as it could possibly be done in the last month--we're talking textbook "Giving Tree" stuff here, but without the creepy patina of guilt. I hope you never have to do anything like this again, but it's great to know we can count on you.
And I know it's not Father's Day yet, but I also need to thank my dad who, in the midst of his never ending recovery from back surgery as well as excruciating knee problems, found that perfect balance of being here when we needed him during the surgery while keeping the family business up and running without my mom in the store to carry the weight that she usually carries there as well. So he's been doing double duty in the worst of circumstances compounded by loneliness at home and my nastiness with him as I tried to handle the logistics of all of this.
Folks, never under-estimate the importance of having people in your life whom you can tell to take care of your shit but still leave you alone when you need it without being hurt, blow-up at and know that they'll cut you slack, even if you don't deserve it, and then take your for tapas when you need re-humanizing. If you don't have people like that in your life, I suggest you start looking for them post-haste.
This will go down as one of our oddest Mother's Days ever, of course. Normally, right now, we would be at Shapiro's Delicatessen in Indianapolis becoming joyously and uncomfortably cholesterol-poisoned and then on our way to our favorite vintage modern dealers, followed by club burgers and turtle sundaes in Shelbyville, IN at the remarkable Cow Palace whose ice cream rivals Graeter's, but I believe if you asked Sherri, she'd say it's better.
Oddly enough, in early April, Sherri said that she wanted to do something different from our traditional Indy Mother's Day trip. . .pretty sure she'd like to take that back now, dontcha think?
Now the weirdest and scariest part of the day today is that the docs are talking about releasing Sherri tomorrow or what sounds like Tuesday at the latest.
Now before you get indignant about this (Alison L., I'm looking at you), remember that the surgeon originally told us she'd be in hospital for 5-8 days. . .and this would put us on schedule; Also, this place appears to be full of sick people, so we don't really want to increase Sherri's risk of infection; Also some more, she wants the hell out of here; And also a little bit more, they keep giving us an evil day nurse who appears to have a chemically based disdain for Sherri that she's not even attempting to conceal or contain.
Don't worry, there's little chance that I'll fly out of here the same day as she's released. In fact, I won't fly with her before I feel completely comfortable that we are managing her pain and that I can see to her needs, so don't worry about that. We'll stay in the hotel a day or four if we have to. I'm also going to wait until we can get a direct flight out of Minneapolis because the idea of transferring planes in Chicago scares me, and just thinking about trying to do it in Detroit causes me to weep openly, which apparently disturbs Emma. . .
I'll update as soon as I get the haps.
GW
Saturday, May 12, 2007
Whiteboard Funny
a) the gas they pumped into her abdomen during the surgery migrating around her body causing pain
or
b) the brain interpreting pain from organs in weird ways and projecting it into parts of the body one would never expect
Regardless of why, large unmanageable Owwies.
Also, today we had twelve hours of the worst nurse ever, but were rewarded by our favorite nurse's name turning up on the whiteboard in Sherri's room for the night shift. This guy is top notch, and one day I'll expound for all of you upon how it's not possible to pay really good nurses enough money for what they do.
Anyway, I thought the Saturday Night Live fans among you would appreciate the accidental funny that the whiteboard made.
GW
Friday, May 11, 2007
Two Oncologists Walk into a Room. . .
So finally the oncologists show up, the radiation guy and a guy from Med. Onc's office, the one who showed up this morning when I left, who most blatantly fouled Sherri under the terms of my "How Could You Have Not Suspected You Have Cancer" rule.
We had a nice chat, which went, in every detail, as my research indicated it would go.
1. No radiation
2. No immediate chemo
3. Quarterly return visits to the Mayo for CT scans in the first three years
4. Bi-annual return visits following that
5. Recurrence to be dealt with if and when they happen
I asked if these quarterly visits could be done in Cincinnati, and they didn't like that idea very much. Maybe it's because this cat Randolph Marks here at the Mayo is a super-hotshot sarcoma guy who wants things done his way, maybe because they don't trust us after getting so royal botched by our GP, and maybe because they don't have a sarcoma savvy oncologist or imaging setup they like in Cincinnati. . .I can only speculate.
Maybe they don't want the business going somewhere else. Maybe it's because Sherri's tumor was the biggest one they've seen here in a while and they want her as a story. . .who knows. It doesn't matter much though since Sherri comes to MN so frequently, it will hardly present a logistical problem.
Frankly, as awful as this whole experience has been, I have come to love Minnesota and its Minnesoters (if that's not what they're called, I'm pretty sure it's what they should be called). There really does appear to be whole different culture here that I'm enjoying getting used to. I think I'm going to start working on Sherri to let me buy a little lake house or something up here. . .we can go on quarterly "cancer vacations."
Also, as a way of broaching the subject of why we keep getting diagnosed with stupidity for not recognizing Sherri's cancer on our own, I asked (knowing full-well the answer) what symptoms we should be looking for in the future to indicate that one of us has a soft-tissue cancer of some sort. They looked at each other and agreed that there weren't really any.
The radiation guy (who works with our favorite oncologist here) admitted that it's really easy for all of the docs to be smug in hindsight, but if our GP didn't find the mass, there was no real reason that we shouldn't have accepted his incorrect diagnoses. He also said that who made us feel like this was our fault was guilty of inappropriate victim-blaming. . .This made the chemo guy squirm and blush a little.
Get TWO physicals.
BTW, this tumor isn't remotely close to the largest retro peritoneal liposarcoma on record. The largest was: 50x48x45 cm, 103.6 lb. The second largest was 16.5kg, and the third was 15kg. I don't know how deep these rankings go, but as soon as the next poll comes out, I'll let you know where Sherri's checks in. I don't care how high it is as long as we make it to the tournament.
GW
We had a nice chat, which went, in every detail, as my research indicated it would go.
1. No radiation
2. No immediate chemo
3. Quarterly return visits to the Mayo for CT scans in the first three years
4. Bi-annual return visits following that
5. Recurrence to be dealt with if and when they happen
I asked if these quarterly visits could be done in Cincinnati, and they didn't like that idea very much. Maybe it's because this cat Randolph Marks here at the Mayo is a super-hotshot sarcoma guy who wants things done his way, maybe because they don't trust us after getting so royal botched by our GP, and maybe because they don't have a sarcoma savvy oncologist or imaging setup they like in Cincinnati. . .I can only speculate.
Maybe they don't want the business going somewhere else. Maybe it's because Sherri's tumor was the biggest one they've seen here in a while and they want her as a story. . .who knows. It doesn't matter much though since Sherri comes to MN so frequently, it will hardly present a logistical problem.
Frankly, as awful as this whole experience has been, I have come to love Minnesota and its Minnesoters (if that's not what they're called, I'm pretty sure it's what they should be called). There really does appear to be whole different culture here that I'm enjoying getting used to. I think I'm going to start working on Sherri to let me buy a little lake house or something up here. . .we can go on quarterly "cancer vacations."
Also, as a way of broaching the subject of why we keep getting diagnosed with stupidity for not recognizing Sherri's cancer on our own, I asked (knowing full-well the answer) what symptoms we should be looking for in the future to indicate that one of us has a soft-tissue cancer of some sort. They looked at each other and agreed that there weren't really any.
The radiation guy (who works with our favorite oncologist here) admitted that it's really easy for all of the docs to be smug in hindsight, but if our GP didn't find the mass, there was no real reason that we shouldn't have accepted his incorrect diagnoses. He also said that who made us feel like this was our fault was guilty of inappropriate victim-blaming. . .This made the chemo guy squirm and blush a little.
Get TWO physicals.
BTW, this tumor isn't remotely close to the largest retro peritoneal liposarcoma on record. The largest was: 50x48x45 cm, 103.6 lb. The second largest was 16.5kg, and the third was 15kg. I don't know how deep these rankings go, but as soon as the next poll comes out, I'll let you know where Sherri's checks in. I don't care how high it is as long as we make it to the tournament.
GW
Clears!
The last time Sherri ate was Monday at 3 pm., so today is HUGE. She's been ordered a clear diet.
As of this typing, she has consumed almost an entire 4oz. of red Jello, eight spoons of beef broth, and a good 2oz. of iced tea.
Gyros can't be far behind. . .
GW
As of this typing, she has consumed almost an entire 4oz. of red Jello, eight spoons of beef broth, and a good 2oz. of iced tea.
Gyros can't be far behind. . .
GW
Saturation F-Bombing Rochester
How? How is this exactly?
I've spent 21 of the last 24 hours in this hospital, and when does the oncologist show up? 10 minutes after I leave to grab a quick shower across the street. Seriously, I was gone 36 minutes.
They won't or can't tell you when they're coming by, and then you can't get back in touch with them once you've missed them. . .even at the great Mayo Clinic.
Sherri processed or retained none of the visit, so I don't even have information to go on. . .I'm starting to think my wife has a drug problem.
There must be some way to get these guys to show up when I'm actually present. What say you Dr. Grammar?
GW
I've spent 21 of the last 24 hours in this hospital, and when does the oncologist show up? 10 minutes after I leave to grab a quick shower across the street. Seriously, I was gone 36 minutes.
They won't or can't tell you when they're coming by, and then you can't get back in touch with them once you've missed them. . .even at the great Mayo Clinic.
Sherri processed or retained none of the visit, so I don't even have information to go on. . .I'm starting to think my wife has a drug problem.
There must be some way to get these guys to show up when I'm actually present. What say you Dr. Grammar?
GW
Another Chicken Theory
Lots of you know that I'm a compulsive researcher, but one of the things I've done from the beginning of this process is to refuse to research Sherri's cancer until the doctors check in fully and I have the right parameters for my research.
My very wise brother-in-law, Greg, a cancer survivor himself, validated this instinct, telling me that research before you have all of the facts will just scare you unnecessarily since you might be looking at data for the wrong type of cell, outdated research, or information that looks scary but is simply beyond your understanding.
And holding myself back from the research task, I believe I now understand what dogs with "bark collars" feel like. Part of me wonders if my focus on the comfort chicken has been a way to diffuse my natural impulse to obsess about the issue at hand, thereby becoming so involved in the research that I would be less useful to Sherri.
And though I paraphrase, I think the old Persian saying is, "There is no many more useful than the one with the big white chicken." (Siamak might be able to verify this one).
And still, as Sherri hallucinates in her bed, there's little else for me to do but give her sips of water, scratch itches that her tubified hands cannot reach, and finally research, research, research. . . it doesn't mean I love the chicken any less.
And (the theme of this blog is starting paragraphs with 'and,' something that English teachers so unfairly tell their students to never do (notice the split infinitive (also embedded parentheticals),(perhaps I'm finally losing it)), which I love, love, love to do in my own writing.) as it turns out, good publicly available scholarship on the peritoneal liposarcoma seems almost as rare as the cancer itself.***
When I find good articles, I'll post them. If you're interested go on ahead and cruise to the links, but if it's too scary to look at, don't worry,I won't hold it against you.
Here's the best one I've found so far: Click
GW
***Parse this paragraph, win a prize.
My very wise brother-in-law, Greg, a cancer survivor himself, validated this instinct, telling me that research before you have all of the facts will just scare you unnecessarily since you might be looking at data for the wrong type of cell, outdated research, or information that looks scary but is simply beyond your understanding.
And holding myself back from the research task, I believe I now understand what dogs with "bark collars" feel like. Part of me wonders if my focus on the comfort chicken has been a way to diffuse my natural impulse to obsess about the issue at hand, thereby becoming so involved in the research that I would be less useful to Sherri.
And though I paraphrase, I think the old Persian saying is, "There is no many more useful than the one with the big white chicken." (Siamak might be able to verify this one).
And still, as Sherri hallucinates in her bed, there's little else for me to do but give her sips of water, scratch itches that her tubified hands cannot reach, and finally research, research, research. . . it doesn't mean I love the chicken any less.
And (the theme of this blog is starting paragraphs with 'and,' something that English teachers so unfairly tell their students to never do (notice the split infinitive (also embedded parentheticals),(perhaps I'm finally losing it)), which I love, love, love to do in my own writing.) as it turns out, good publicly available scholarship on the peritoneal liposarcoma seems almost as rare as the cancer itself.***
When I find good articles, I'll post them. If you're interested go on ahead and cruise to the links, but if it's too scary to look at, don't worry,I won't hold it against you.
Here's the best one I've found so far: Click
GW
***Parse this paragraph, win a prize.
Thursday, May 10, 2007
Abdominatrix
Sorry about the delay on this major posting, but I wanted to sit down with Emma and tell her what was going on first, but before that I had to wait for the 7pm shift change, which happened around 7:45.
The surgical res. made her final pass for the day at around 6pm, and I told her that I was expecting a report from pathology and if I couldn't have the report now, I wanted to know why. So she looked things up on the network, and of course the lab work had been done for who knows how long. What bugs me most is that the news is actually as good as we could possibly have hoped for, and for some reason they wanted to keep us hanging on the line for it. . .I'm guessing since the news is good, it didn't seem so urgent to them, and they couldn't see why it might be urgent to us. . .go fig.
So here's what we've got: Ancient as this tumor is it is still Grade 1, which indicates the lowest malignancy, and it has not metastisized. While the tumor has some sclerosing features (and someone. . .prolly Peggy will need to explain this bit to us) they did not find the density that they believed they would in examining the CT scans, and this would have been bad, or at least worse, but I'm not sure I'll understand why until our consult with the medical oncologist.
The surgeons believe that the radiation oncologist will have no further interest in our case at this point since they got the whole mass and there's nothing left to shoot at.
They're not really willing to speculate officially on what the medical oncologist will say beyond, "this is the sort of thing they often choose not to go at with chemo, but monitor carefully, instead." So we'll have to wait and see there.
And as the radiation guy told us last week (though it feels like a year ago), regardless of how we go at this there's a 50/50 chance of recurrence even if we get the whole thing out. And as the surgeon said at our first consult, He's taken these things out of people and never seen them again, and he's taken them out of people and seen them again two, three, four, five, six times.
I mentioned that I don't want to be too laid back about how we approach this since I'm fine living with a one kidneyed partner, but imagine if this thing comes back and tries to take her other kidney, we could be in a whole new world of screw. But they say that even if it recurs, it's likely to recur from the same site as the first instance, which was in the area of the kidney they removed, so with vigilance (and a signficantly better family physician and monitoring team), we should be able to intercept future occurrences before they endanger any other organs.
And now what you've all been waiting for. The final and official data on the mass (did you know that "tumor" has always been one of my least favorite words, now even moreso):
Dimensions: 41x31x13cm or approx. 16"x12"x5"
Weight: 7.2 kg or approx 15.9 pounds
At this point I'd like to point something out (and I'm sorry that this is getting long, but it needs to be said). So far dozens of people friends, family, nurses, docs, techs, everyone has said things to us like this:
"And you had no idea that something was wrong with you?"
Which makes me want to bash them with a 17 pound tumor, so I'm going to tell our story as an object lesson for eveyone who trusts his or her family physician.
About four or five years ago, Sherri began complaining of chronic, acute sacroiliac pain and fatigue. She went to her doc who first thought she might have had rheumatoid arthritis, but then settled on the diagnosis of fibromyalgia. They started to work out a medical regimen to deal with her fatigue, joint pain, and sleep disturbances, and things got better for a while, except for the fatigue which kept worsening.
Around two years ago Sherri began to complain of stomach discomfort, cramping, hardness in her stomach and discomfort every time she at a normal sized meal. The doc chalked it up to reflux, nervous stomach, stress, etc. About fourteen months ago, the doc ordered an ultrasound of her gall-bladder, which was negative for gallstones. And he decided not to pursue anything else.
During this same time, Sherri was disturbed to find that she was gaining weight in her stomach in ways that she never had before. She has spent the last year aggressively dieting with no success. So she went to the doc to find out what was going on. In the past when she put on weight, she had always put it on evenly, no matter how much weight she put on. "Why," she asked, "Am I suddenly putting all this weight on my stomach?"
The Doc told her, "Look, you're a busy 38-40 year-old-woman. You have a high stress job, are raising a child, and also in a graduate program. Of course you're tired." As for the strange weight gain, the doc explained this by saying that as we age, our bodies change too; we sometimes start to gain weight in different ways. He also told her that some of her fibromyalgia meds were certainly helping her put on weight. "All really pretty normal," he told her.
So yeah, we had a pretty damned good idea that something was wrong. The only problem was that we had put our trust in a physician who should have been more proactive about seeking answers more agressively. We made the mistake of assuming our doc was competent, and we believed what he told us.
Of course if we had to do it all again, we would seek a second opinion, but when you're 38 and you're body's doing weird shit, do you really say to yourself, "Hey, I wonder if I might have cancer?" Or do you do what Sherri did for two years: Beat yourself up because your body is going to hell and you feel like it's something you're doing or not doing, which is causing the problem? Because let's face it. . .this story is not one you ever expect yourself to be in the middle of.
Anyway, this is where we have to thank Susan Engeleiter, president of DRC, the company Sherri works for. You see, this cancer kills one of two ways: It spreads to the lungs or liver or it gets so big that it disables a vital organ before you realize what's happening, and one morning you wake up dead. If DRC hadn't sent Sherri to the Mayo for a physical, who knows what might have happened.
Sorry if this good news post has turned into a rant, but it's late, and I haven't slept much this week. . .those of you who don't know me well, please blame the sleep deprivation, and those of you who know me well, just say it: "There he goes again."
Sorry for all of the colons in this post: Very pretentious, I know. . . sleep deprivation.
GW
The surgical res. made her final pass for the day at around 6pm, and I told her that I was expecting a report from pathology and if I couldn't have the report now, I wanted to know why. So she looked things up on the network, and of course the lab work had been done for who knows how long. What bugs me most is that the news is actually as good as we could possibly have hoped for, and for some reason they wanted to keep us hanging on the line for it. . .I'm guessing since the news is good, it didn't seem so urgent to them, and they couldn't see why it might be urgent to us. . .go fig.
So here's what we've got: Ancient as this tumor is it is still Grade 1, which indicates the lowest malignancy, and it has not metastisized. While the tumor has some sclerosing features (and someone. . .prolly Peggy will need to explain this bit to us) they did not find the density that they believed they would in examining the CT scans, and this would have been bad, or at least worse, but I'm not sure I'll understand why until our consult with the medical oncologist.
The surgeons believe that the radiation oncologist will have no further interest in our case at this point since they got the whole mass and there's nothing left to shoot at.
They're not really willing to speculate officially on what the medical oncologist will say beyond, "this is the sort of thing they often choose not to go at with chemo, but monitor carefully, instead." So we'll have to wait and see there.
And as the radiation guy told us last week (though it feels like a year ago), regardless of how we go at this there's a 50/50 chance of recurrence even if we get the whole thing out. And as the surgeon said at our first consult, He's taken these things out of people and never seen them again, and he's taken them out of people and seen them again two, three, four, five, six times.
I mentioned that I don't want to be too laid back about how we approach this since I'm fine living with a one kidneyed partner, but imagine if this thing comes back and tries to take her other kidney, we could be in a whole new world of screw. But they say that even if it recurs, it's likely to recur from the same site as the first instance, which was in the area of the kidney they removed, so with vigilance (and a signficantly better family physician and monitoring team), we should be able to intercept future occurrences before they endanger any other organs.
And now what you've all been waiting for. The final and official data on the mass (did you know that "tumor" has always been one of my least favorite words, now even moreso):
Dimensions: 41x31x13cm or approx. 16"x12"x5"
Weight: 7.2 kg or approx 15.9 pounds
At this point I'd like to point something out (and I'm sorry that this is getting long, but it needs to be said). So far dozens of people friends, family, nurses, docs, techs, everyone has said things to us like this:
"And you had no idea that something was wrong with you?"
Which makes me want to bash them with a 17 pound tumor, so I'm going to tell our story as an object lesson for eveyone who trusts his or her family physician.
About four or five years ago, Sherri began complaining of chronic, acute sacroiliac pain and fatigue. She went to her doc who first thought she might have had rheumatoid arthritis, but then settled on the diagnosis of fibromyalgia. They started to work out a medical regimen to deal with her fatigue, joint pain, and sleep disturbances, and things got better for a while, except for the fatigue which kept worsening.
Around two years ago Sherri began to complain of stomach discomfort, cramping, hardness in her stomach and discomfort every time she at a normal sized meal. The doc chalked it up to reflux, nervous stomach, stress, etc. About fourteen months ago, the doc ordered an ultrasound of her gall-bladder, which was negative for gallstones. And he decided not to pursue anything else.
During this same time, Sherri was disturbed to find that she was gaining weight in her stomach in ways that she never had before. She has spent the last year aggressively dieting with no success. So she went to the doc to find out what was going on. In the past when she put on weight, she had always put it on evenly, no matter how much weight she put on. "Why," she asked, "Am I suddenly putting all this weight on my stomach?"
The Doc told her, "Look, you're a busy 38-40 year-old-woman. You have a high stress job, are raising a child, and also in a graduate program. Of course you're tired." As for the strange weight gain, the doc explained this by saying that as we age, our bodies change too; we sometimes start to gain weight in different ways. He also told her that some of her fibromyalgia meds were certainly helping her put on weight. "All really pretty normal," he told her.
So yeah, we had a pretty damned good idea that something was wrong. The only problem was that we had put our trust in a physician who should have been more proactive about seeking answers more agressively. We made the mistake of assuming our doc was competent, and we believed what he told us.
Of course if we had to do it all again, we would seek a second opinion, but when you're 38 and you're body's doing weird shit, do you really say to yourself, "Hey, I wonder if I might have cancer?" Or do you do what Sherri did for two years: Beat yourself up because your body is going to hell and you feel like it's something you're doing or not doing, which is causing the problem? Because let's face it. . .this story is not one you ever expect yourself to be in the middle of.
Anyway, this is where we have to thank Susan Engeleiter, president of DRC, the company Sherri works for. You see, this cancer kills one of two ways: It spreads to the lungs or liver or it gets so big that it disables a vital organ before you realize what's happening, and one morning you wake up dead. If DRC hadn't sent Sherri to the Mayo for a physical, who knows what might have happened.
Sorry if this good news post has turned into a rant, but it's late, and I haven't slept much this week. . .those of you who don't know me well, please blame the sleep deprivation, and those of you who know me well, just say it: "There he goes again."
Sorry for all of the colons in this post: Very pretentious, I know. . . sleep deprivation.
GW
About This Chicken
Sherri was walked twice today followed by short sessions of chair-sitting. The walks were only out of her room and one door down, but it's something. . .the sitting lasted about 30 minutes each session. Needless to say the violent movement out of bed and back in bed were less fun for her than, well, let's say anything else she's ever done. But many people are telling me that no matter how awful this is for her, it's super important for her to be moving around, so I'm trusting them. Now we've just heard that they're going to get her out again. . .not loving that idea.
My current gripe is that we have not yet seen an oncologist or heard from the pathologist about the makeup of her tumor or next steps. Since they said it would be at least 24 hours until we heard something, I gave everybody the benefit of the doubt until this morning. After all, the thing was ginormous (hmm never had to spell that one before), and so maybe it'll take super-extra-long to analyze, and it's rare, so maybe there's some special pathologist that they're waiting for to do the thing, but the uncertainty is a little off-pissing, and I wish someone would just communicate with me about the holdup. And yes, Jack, I've shaken every tree I can think of around here for an answer.
Apparently my temper tantrums are not yet legendary enough to have made it this far west. . .
Since some of the blog readers are psychologists, professional or amateur, maybe someone here can help me with this chicken thing.
I first saw this guy (gal? Terry B. would know) when I needed a power walk around the hospital and ended up in the gift shop, and for some reason it just made me smile. . .here I am standing before a display of multi-media farm animals grinning at this thing like a four-year-old. The craziest part is that there were other chickens on display, but this was the only one that had any sort of effect on me. In fact, there was a smaller version of this bird that looked identical other than in size, and provoked absolutely no response.
So for the last three days, on every trip I've made to the main floor (and this happens a lot because Sherri regularly kicks me out of the room when something too embarrassing or too painful is about to happen to her), I've stopped in to peek at this bird for a little or a long while, and she never seems to get less funny for me.
Today when Sherri was first booted out of bed for the walk/sit cancer biathalon, I, of course, headed down to the gift shop, but on the way, I broke into a hot sweat as this thought went through my mind: "What if someone bought the chicken." Stupid, I know. . .I mean, who on Earth would buy this stupid chicken. . .but I didn't care. I couldn't wait for the elevator and sprinted down five flights of stairs in a panic and burst into the gift shop. It probably looked like I was about to annouce VJ day or something.
And there it was. My chicken was still there. . .which is when I realized that over the course of three days and a dozen or so visits, I had started to think of it as 'my' chicken, and unwilling to risk having someone else take the bird away, I shelled out what every one of you would certainly consider a stupid amount of money for an object composed of a carved Styrofoam block, a bit of papier mache, some paint, some cardboard, and feathers.
Sherri is far too gorked out to understand what the chicken is and why it's here, let alone to consider it just another one of my quirks, but I'm guessing even when she's all compus mentis, I still won't be able to explain it to her.
Truly yours,
Farmer GW
Sherri's First Abdominal Growth
Sherri's progressing. . .sitting in a chair as we speak, and they're threatening to make her walk around.
GW
Wednesday, May 9, 2007
The Future Will be Moderated and Other Random Thoughts
Hon, I've been round and round with the Google people (who run blogspot) about their big brother language, and they just don't care. Their chief editor appears to be the last living adherent to the PRAVDA Style Manual. I know some folks hate being moderated in the first place, but I'm doing it more to protect the good-hearted people who accidentally share information they will eventually be very sorry they shared: phone numbers, email addresses, suggestive dreams, etc. . . seriously, whoever this "Anonymous" guy is, he could probably benefit from a few sessions with a decent analyst.
We're pals with the surgical resident again. Turns out these baby docs have skin like rhino. . .she says she can't email photos of the operation to us because of the red-tape it will involve but thinks she can have someone put them on a CD-ROM, so squeamish ones, time to start worrying again.
Get a physical.
fuzzywhitedogs, everyone's trying like crazy to figure out who you are. Oh and, We've recently been handed down (from my parents) a cool Ekornes recliner--Good to know it will be put to use.
A number of people have posted looking for address information to send cards, so here it goes. Sherri is at Saint Mary's Hospital,1216 Second Street SW, Rochester, Minnesota 55902. But Sherri's keeping close track of the blog postings, so that works every bit as well as a card.
This is just to answer a bunch of general questions I've gotten on regular email, and I'll do my best to get it right without blowing on too long: No one gets admitted to the Mayo Clinic itself. The Mayo Clinic is this huge Medical Facility that looks half like the world's snappiest doctor's office, half like an art museum, and half like where the good guy would live in a Fritz Lang movie (I know that adds up to one and a half, but the place is huge).
The Mayo Clinic is physically attached to Methodist Hospital and emotionally (because it's about .7 miles down the road) attached to St. Mary's Hospital. The two Hospitals are staffed by the Mayo Clinic (and are part of the Clinic) and all of the employees in the Hospitals themselves wear Mayo Clinic badges. The reason I'm telling you all of this is that more people than I realized at first believed that Sherri was admitted during the ten or so days that she spent being diagnosed and bounced between specialists in the Mayo Clinic. She was in fact never admitted to a hospital until Tuesday when she had the operation.
Am a teensy bit sleep deprived right now which means that I could keep rambling interminably, so I'm going to choose this random stopping place to try to sleep for a second or two before the blog get two yards long.
Oh one more thing, from Sherri's window, we get to watch the rescue chopper take off and land a few times a day, which I thought was pretty cool at first, but then I realized how much bad shit must be going on for someone every time that sucker lands on the roof. . .and see, now I'm getting maudlin. . .that's it for tonight.
GW
We're pals with the surgical resident again. Turns out these baby docs have skin like rhino. . .she says she can't email photos of the operation to us because of the red-tape it will involve but thinks she can have someone put them on a CD-ROM, so squeamish ones, time to start worrying again.
Get a physical.
fuzzywhitedogs, everyone's trying like crazy to figure out who you are. Oh and, We've recently been handed down (from my parents) a cool Ekornes recliner--Good to know it will be put to use.
A number of people have posted looking for address information to send cards, so here it goes. Sherri is at Saint Mary's Hospital,1216 Second Street SW, Rochester, Minnesota 55902. But Sherri's keeping close track of the blog postings, so that works every bit as well as a card.
This is just to answer a bunch of general questions I've gotten on regular email, and I'll do my best to get it right without blowing on too long: No one gets admitted to the Mayo Clinic itself. The Mayo Clinic is this huge Medical Facility that looks half like the world's snappiest doctor's office, half like an art museum, and half like where the good guy would live in a Fritz Lang movie (I know that adds up to one and a half, but the place is huge).
The Mayo Clinic is physically attached to Methodist Hospital and emotionally (because it's about .7 miles down the road) attached to St. Mary's Hospital. The two Hospitals are staffed by the Mayo Clinic (and are part of the Clinic) and all of the employees in the Hospitals themselves wear Mayo Clinic badges. The reason I'm telling you all of this is that more people than I realized at first believed that Sherri was admitted during the ten or so days that she spent being diagnosed and bounced between specialists in the Mayo Clinic. She was in fact never admitted to a hospital until Tuesday when she had the operation.
Am a teensy bit sleep deprived right now which means that I could keep rambling interminably, so I'm going to choose this random stopping place to try to sleep for a second or two before the blog get two yards long.
Oh one more thing, from Sherri's window, we get to watch the rescue chopper take off and land a few times a day, which I thought was pretty cool at first, but then I realized how much bad shit must be going on for someone every time that sucker lands on the roof. . .and see, now I'm getting maudlin. . .that's it for tonight.
GW
Dilaudid
Is one of my favorite favorite words. It's also a great song by one of my favorite bands, The Mountain Goats.
As a post-op pain killer, I also have some experience with its greatness, but that was back in the days before they gave you the little trigger mechanism so you could dose yourself appropriately without OD'ing. Still, the drawback of that delivery system as opposed to say, morphine drip, is that if one falls alseep for even an hour and is unable to punch that little trigger every six minutes, one wakes up in really picturesque biblical quality pain.
So we've finally gotten them to prescribe Sherri some Oxycontin so she can sleep without waking up 53 minutes later in The Old Testament. I'm staying the night in St. Mary's tonight since last night was such torture for her. . .those of you who know her best will know what it means that she didn't kick me out of the room to take care of Emma, of whom she is rather fond.
No worries though, Bugsy is safe with her grandparents across the street at one of Mariott's less fashionable but more convenient brands.
FACT: It appears possible to watch an episode of "Friends" on TV every half hour in this hospital from about 5pm to 3pm. Could I BE more excited. . . :P
FACT: No MSNBC either. . .
GW
As a post-op pain killer, I also have some experience with its greatness, but that was back in the days before they gave you the little trigger mechanism so you could dose yourself appropriately without OD'ing. Still, the drawback of that delivery system as opposed to say, morphine drip, is that if one falls alseep for even an hour and is unable to punch that little trigger every six minutes, one wakes up in really picturesque biblical quality pain.
So we've finally gotten them to prescribe Sherri some Oxycontin so she can sleep without waking up 53 minutes later in The Old Testament. I'm staying the night in St. Mary's tonight since last night was such torture for her. . .those of you who know her best will know what it means that she didn't kick me out of the room to take care of Emma, of whom she is rather fond.
No worries though, Bugsy is safe with her grandparents across the street at one of Mariott's less fashionable but more convenient brands.
FACT: It appears possible to watch an episode of "Friends" on TV every half hour in this hospital from about 5pm to 3pm. Could I BE more excited. . . :P
FACT: No MSNBC either. . .
GW
About Those Tumor Photos
Those of you who are living in fear that the tumor photos will be posted might be saved for the time being. You see, I kind of got the surgical resident who like showing that stuff to us in trouble this morning. . .by accident, of course.
One of the nurses tried to give Sherri some meds this morning that she did have in her medical history, but has discontinued for some time. I managed to stop the meds from being adminstered, but when the Surgeon came for rounds with his resident and what looked like a couple of 10th graders (interns, I'm guessing), I asked whose idea it was to order these meds, and guess who it turns out to be? She blamed the pharmacy for the bad info, and I truly believe that, but she was pretty embarrassed and got a look from the boss man.
Nurse shift change just started, back in a jiffy.
GW
One of the nurses tried to give Sherri some meds this morning that she did have in her medical history, but has discontinued for some time. I managed to stop the meds from being adminstered, but when the Surgeon came for rounds with his resident and what looked like a couple of 10th graders (interns, I'm guessing), I asked whose idea it was to order these meds, and guess who it turns out to be? She blamed the pharmacy for the bad info, and I truly believe that, but she was pretty embarrassed and got a look from the boss man.
Nurse shift change just started, back in a jiffy.
GW
Good Morning Good Morning Good
The surgical resident is examining Sherr'is incision right this minute, and she's instructed me not not be anywhere nearby while that is going on. They're actually removing the bandage right now. She's gonna check w/ the surgeon to see if her NG tube can be removed. I think we'll all enjoy that.
She had a pretty rough night. As far as I can tell no real sleep still. . .but I'm guessing that's pretty normal after the first night of something this big.
She's running a bit of a fever right now,which is pretty normal.
They say they're going to make her sit in chair to today. I'm brave, but I think I'll try not to be in the room to see that happen.
GW
She had a pretty rough night. As far as I can tell no real sleep still. . .but I'm guessing that's pretty normal after the first night of something this big.
She's running a bit of a fever right now,which is pretty normal.
They say they're going to make her sit in chair to today. I'm brave, but I think I'll try not to be in the room to see that happen.
GW
Tuesday, May 8, 2007
That Looks Like it Hurts
They didn't actually get her back into the room until a little after 4:00. She was very out of it and in a lot of pain.
The biggest problem beyond the pain, right now, is that she's incredibly thirsty, and word from the surgeon's resident is that she won't get actual liquids orally until around Friday. I've been feeding her a steady stream of ice chips, but she's finding that unsatisfying and infuriating. My prediction is that I get punched by tomorrow at 3:15
There hasn't been any actual sleeping either, and that is a little worrying, but I'm trying to convince myself that once she gets enough Dilaudid (delivered by that cute little hand-held trigger) she'll nod off.
The surgical resident is kind of funny. She's this tiny little thing who was trying really had to disguise how fascinating and entertaining she found this case, but we finally got her to admit that it was pretty fun being involved in removing a sarcoma of this magnitude. Once we got her a little wound up she showed us slides from Sherri's surgery including one of the tumor just sitting there on a table.
Horrifying. . . I don't know what else to call it. Put it this way DRC Cincinnati crew, no matter how cool it sounds in theory, trust me on this--you do NOT want her to have this thing in a jar on her desk. Besides, it would take a transparent garbage can to display this thing properly. . . and even then you'd all need another garbage can in her office to barf in every time you had to go in there. Super double extra icky. . .
If you're naughty, I might just have to post photos.
GW
P.S. for those tracking vitals (Jack) Avg. BP over the last three hours 124/66, Pulse 85. . .take that HIPAA
The biggest problem beyond the pain, right now, is that she's incredibly thirsty, and word from the surgeon's resident is that she won't get actual liquids orally until around Friday. I've been feeding her a steady stream of ice chips, but she's finding that unsatisfying and infuriating. My prediction is that I get punched by tomorrow at 3:15
There hasn't been any actual sleeping either, and that is a little worrying, but I'm trying to convince myself that once she gets enough Dilaudid (delivered by that cute little hand-held trigger) she'll nod off.
The surgical resident is kind of funny. She's this tiny little thing who was trying really had to disguise how fascinating and entertaining she found this case, but we finally got her to admit that it was pretty fun being involved in removing a sarcoma of this magnitude. Once we got her a little wound up she showed us slides from Sherri's surgery including one of the tumor just sitting there on a table.
Horrifying. . . I don't know what else to call it. Put it this way DRC Cincinnati crew, no matter how cool it sounds in theory, trust me on this--you do NOT want her to have this thing in a jar on her desk. Besides, it would take a transparent garbage can to display this thing properly. . . and even then you'd all need another garbage can in her office to barf in every time you had to go in there. Super double extra icky. . .
If you're naughty, I might just have to post photos.
GW
P.S. for those tracking vitals (Jack) Avg. BP over the last three hours 124/66, Pulse 85. . .take that HIPAA
Good News from The Surgeon
Sherri's out of surgery and should be back in the room in about an hour and a half.
The surgeon believes he got the entire tumor, but is being a little cautious, saying that there's no telling whether a cell or two was left behind and that it'll be up to the patholgists and oncologists to determine whether it made any headway into the liver or lungs.
In order to get the turmor out cleanly and stand Sherri the smallest chance of recurrence, he was, however, forced to take her left kidney. Still, people live long healthy lives with one kidney and I expect Sherri to do just that. It will unfortunately mean a premature end to what Sherri hoped would be a successful semi-pro kickboxing career. . .but I hope you all will let me break that news to her.
The surgeon described the tumor as a bit larger than a basketball and about 15 pounds. Yikes!
More soon,
GW
The surgeon believes he got the entire tumor, but is being a little cautious, saying that there's no telling whether a cell or two was left behind and that it'll be up to the patholgists and oncologists to determine whether it made any headway into the liver or lungs.
In order to get the turmor out cleanly and stand Sherri the smallest chance of recurrence, he was, however, forced to take her left kidney. Still, people live long healthy lives with one kidney and I expect Sherri to do just that. It will unfortunately mean a premature end to what Sherri hoped would be a successful semi-pro kickboxing career. . .but I hope you all will let me break that news to her.
The surgeon described the tumor as a bit larger than a basketball and about 15 pounds. Yikes!
More soon,
GW
Closing Now
Just received word that the main part of surgery is over and the docs are now closing.
Still no news of how things went, though. Time-wise this puts us on the short side of the estimates. I hope that means good things.
We'll see.
GW
Still no news of how things went, though. Time-wise this puts us on the short side of the estimates. I hope that means good things.
We'll see.
GW
Surgery has begun
Just received word that surgery started at 9:40 (10:40 for you EST-ers) with no real clue how long things might take, estimates range from 1.5 to 6 hours.
Gastroenterologic surgery appears to be something of a chaos science.
GW
Gastroenterologic surgery appears to be something of a chaos science.
GW
Technology
In the surgical waiting room of the Mayo Clinic/St. Mary's hospital is a big flat panel display like you might see tracking arrivals and departures in an airport.
Sherri's patient number has just been highlighted in yellow which means that she has officially entered the OR, but the procedure has not yet started.
Thanks for the flood of positive thoughts this morning. Having the support of so many friends is more comforting than we ever could have expected.
Sherri's patient number has just been highlighted in yellow which means that she has officially entered the OR, but the procedure has not yet started.
Thanks for the flood of positive thoughts this morning. Having the support of so many friends is more comforting than we ever could have expected.
Monday, May 7, 2007
We have a report time
Sherri has been instructed to report to St. Mary's Hospital at 6:30 a.m. tomorrow (Tuesday) morning.
This is a bit of good news since she was originally told to show up at 8:00 as the second surgery of the day. We were told then that her actual surgery time could be anytime after 8:00, "depending on how the first operation goes."
We suspect that this means Sherri has now been moved up to the first surgery of the day.
I'll post again as soon as we know more.
GW
This is a bit of good news since she was originally told to show up at 8:00 as the second surgery of the day. We were told then that her actual surgery time could be anytime after 8:00, "depending on how the first operation goes."
We suspect that this means Sherri has now been moved up to the first surgery of the day.
I'll post again as soon as we know more.
GW
Saturday, May 5, 2007
Youth Athletics Interlude
I want to thank everyone who has expressed concern for Emma during this difficult time. For better or worse, right or wrong, we've told her the whole truth about this situation, so there's no need for anyone who sees her to feel that there are any secrets that need protecting. She's scared, of course, but she's also much tougher than she looks. . .sound familiar?
Today was a banner day for Emma, though. As many of you know her great passion is playing catcher for her fast-pitch softball team (puzzlingly named "The Wyoming Babushkas"). Emma was behind the plate today as Audra Chalmers and Gabby Potvin combined to pitch a no-hitter against Sharonville. The Grandmothers. . .sorry, Babushkas are now 2-0 and really playing well.
Good luck to the team in Tuesday's game. And let's hope it's only one that we'll miss since that will mean things are going well.
We head back to Rochester tomorrow morning. . .
GW
Today was a banner day for Emma, though. As many of you know her great passion is playing catcher for her fast-pitch softball team (puzzlingly named "The Wyoming Babushkas"). Emma was behind the plate today as Audra Chalmers and Gabby Potvin combined to pitch a no-hitter against Sharonville. The Grandmothers. . .sorry, Babushkas are now 2-0 and really playing well.
Good luck to the team in Tuesday's game. And let's hope it's only one that we'll miss since that will mean things are going well.
We head back to Rochester tomorrow morning. . .
GW
Wednesday, May 2, 2007
Welcome to our blog
Sherri and I are humbled to know that we have so many friends who care about us and have offered their encouragement and love in this very difficult time.
As much as we would like to keep everyone up to date personally, it is becoming clear that we simply cannot do so and still maintain consistency of information and detail. So we have decided to start keeping this blog in attempt to do just that.
GW
As much as we would like to keep everyone up to date personally, it is becoming clear that we simply cannot do so and still maintain consistency of information and detail. So we have decided to start keeping this blog in attempt to do just that.
GW
The Narrative thus Far
This will, undoubtedly, be the longest entry of the blog for a while, but it needs to catch a bunch of people up on the story from the beginning and fill a whole bunch of other people in on gaps due to my inconsistent and otherwise quirky communications over the eight or nine days. So here goes
Monday, 23 April 2007—For those of you who don’t know, Sherri is a Vice-President of Performance Assessment Services at the Minneapolis-based Data Recognition Corporation. As part of her company’s wellness initiative, Sherri arrived at the Mayo Clinic in Rochester, Minnesota for what was scheduled to be a three-day physical examination. The bulk of the first day was made up of fairly ordinary sorts of tests and evaluations and terminated with a face-to-face physical with one of Mayo’s Internists.
During this examination, the physician was puzzled to see that Sherri’s right lung and diaphragm were being pushed out of place for some reason. He was further surprised to find what he described as a “hard mass” near her stomach, which was, of course, not supposed to be there. The doctor told Sherri that she would need to have a CT scan and that the clinic would attempt to work her into the schedule as soon as possible
Tuesday, 24 April 2007—Late in the day, after she had been seen by a variety of specialists, scheduled in the normal course of the physical, Sherri was called to get her CT scan. Very soon after it was completed, she was informed that the scan identified a 25 cm (later revised to 35 cm—with complete dimensions a bit difficult to describe) tumor. Diagnosticians were immediately convinced that the tumor is a very rare form of cancer called a “retroperitoneal liposarcoma.”
Sherri was informed that she would have a surgical consultation the next morning at 10 am. She called me to tell me what was going on, and I called my mother, who, in a little more than four hours arrived from Toledo to take care of Emma. Thanks Mom.
Wednesday, 25 April 2007—I was able to get to Rochester by about 8:15 and accompanied Sherri to her surgical consultation. Here, we saw the actual film of the CT scan and became aware of exactly how horrifying this tumor is. This large mass stretches across the breadth of Sherri’s Torso, pushing some organs out of its way and engulfing others. The surgeon said that the tumor is very large and would make a long and difficult surgery, but that he could remove it if necessary. He explained that while it is possible that such surgery could be completely successful, it is also possible that he would not be able to remove the entire tumor or that in the process or Sherri might lose a kidney, her spleen, and/or part of her stomach in the effort to remove the mass. The surgeon believed that the logical next step was to seek input from Mayo Clinic oncologists on the possibilities of shrinking the tumor prior to surgery through chemotherapy or radiation.
We left terrified and uncertain of the next steps in the process, waiting for the team that would be involved in Sherri’s treatment to take shape.
Later in the day, we were contacted with our schedule. Friday she would have a biopsy, Monday morning would be her evaluation with a medical oncologist and Monday afternoon would be her consultation with a radiation oncologist.
Thursday, 26 April 2007—Nothing scheduled: very excruciating
Friday, 27 April 2007—The clinic scheduled six hours for Sherri’s biopsy figuring for sedation and recovery time. Those of you who know her best will not be surprised to hear that she completed the biopsy in less than three hours since she refused pain medication or sedatives. The nurses involved with this biopsy were impressed and possibly a little bit disturbed by her refusal to wuss-out.
Now the problem of how to kill two an a half days before seeing the oncologists and finding out what was really going on here. . .
Saturday, 28 April 2007—By some bizarre and lucky coincidence, my aunt, Brooke Davis just opened in a hilarious musical comedy in Minneapolis. And in another stroke of luck, my uncle, Barry, was coming to Minneapolis from Tucson (where they live) to visit her. They very generously invited us to Minneapolis to see Brooke’s show, have dinner, and then they put us up in the unbelievably hip Chambers Hotel in downtown Minneapolis. To give you some idea of how cool this place is, in the restaurant of the hotel is a video art installation that we saw in San Francisco MOMA only nine months ago.
Anyway, I’m sure that we were not much fun to have as company for a night out, but Brooke and Barry helped us pass pleasantly what would have otherwise been a completely unbearable Saturday.
A side note: I know that many readers of this blog live in Minneapolis, and I would really not be doing a complete job as a blogger if I didn’t spend a bit of time talking about Brooke’s show. The musical comedy is called Menopause the Musical and is being performed in theater called The Lab, located at 700 1st St. The show focuses on the trials and tribulations of four women from very different backgrounds who share the common struggle with “the change.” The music consists of re-lyric-ed pop, rock, r&b, and soul hits from the last forty or fifty years of popular music. The songs are hilarious, the physical comedy beautifully executed, and all of the actor/singers are terrifically talented. In the pits of despair as we were, the show still managed to wrench multiple laughs out of both Sherri and me, and I would never have thought that possible. Get your tickets here.
Sunday, 28 April 2007—Drive back to Rochester. Nothing scheduled: very, very excruciating
Monday, 29 April 2007—We arrived at our 9:30 medical oncology evaluation to a bit of bad luck. The pathologist’s report on the biopsy had not yet been completed. Because of this, the oncologist who saw us was able to do little more than give us a general understanding of how, in general, liposarcomas are treated and what sort of options are available. However, he was very careful to explain to us that each case is different and needs to be evaluated and handled differently. Frankly, what it came down to was that he was unable to give us any clear understanding of what we had coming until he had the pathology report. The result of this meeting was to leave us, frankly, even more terrified than we were before our meeting with him.
We sulked around Rochester for about an hour and then returned to our hotel room to try to gather our wits. It was at this point that we got our first remotely decent news in a week. The internist who had been working with Sherri from the beginning of this process called to tell us that the results of the biopsy had made it to the oncologist’s office about five minutes after we left.
According to the internist, the tumor was determined to be a well-differentiated tumor, which basically means that while the tumor is very large and prone to local recurrence, it is of relatively low-grade malignancy and less likely to metastasize. (Peggy, did I understand this right?) Because I was at the time too stupid about cancer to understand remotely what the doc was telling me, he had to explain that this was the best possible news we could have hoped to receive. I believe what he said was (and it was actually kind of cute in his Indian accent), “If I had to have a sarcoma, this is the one I would want.”
At 2 pm we met with the radiation oncologist, a particularly impressive man, who agreed that we had good reason to be encouraged by the results of the cytology, but that biopsies aren’t perfect and that we need to be aware that we won’t know for certain what we are dealing with until it is actually removed and a full pathology is completed.
He was also able to clear up a really important question for us: I’m not sure I’m going to be able to explain this well enough so I hope everyone will bear with me. The physicians at the Mayo Clinic are not like the docs I’ve run into anywhere else. For the most part, these people have an aura of confidence, competence, and brilliance that I have not been around before in a medical setting. It’s sort of like if you had scheduled an hour with a golf pro at the club, and when you showed up your teacher turned out to be Nick Faldo or Vijay Singh. Still, whenever they have shown up to talk to us about Sherri’s case, they all seem just a bit more troubled than Sherri or I have been completely comfortable with. Our radiation guy explained it: There are only a few places in the country really well equipped to deal with sarcomas, the Mayo Clinic being one, but even they see very few of these, and frankly, Sherri’s is the biggest one any of them has ever seen. Impressive, huh?
Anyway, he also made the following points:
1. Given that this is a well-differentiated tumor, he found it unlikely that the medical oncologist would be willing to conduct chemotherapy. He believed that since surgery is certainly in Sherri’s future, it would be unwise to risk weakening her health before surgery in the off-chance that chemo would result in some small shrinkage in the tumor.
2. Given the size of the tumor, it presents a variety of problems with regard radiation therapy. First he would not be able to radiate the entire tumor without risking serious damage to organs that are involved. And (this is the bit that I don’t really understand so if any of my expert pals can clear it up, go for it in the comments) if he radiates the tumor before the surgery, and radiation fails to shrink it, he won’t be able to come back and do radiation at a later date if, for example, the surgery is incapable of getting the whole tumor or if they need to do radiation during the surgery. This stuff is really complicated to me, folks, so I’m pretty sure I’m doing a bad job with it, sorry
3. Given points one and two, he believes that the best course of action is to go after the tumor surgically and clean things up with radiation or chemo if necessary, afterwards.
This was a fairly satisfying consult to Sherri who has said repeatedly over the last week, “I just want this thing out of me,” and was never fully satisfied with my belief that we need to hear as many voices checking in on this as possible before we make any rash decision.
Another side note: “I just want this thing out of me”—I believe she said also this repeatedly the week of August 20, 1995 before Emma was born.
Tuesday 1 May 2007—Today I’m writing this really long blog, not sure whether I’ve been the least bit coherent, knowing that I’m going to post it with virtually no proofreading, just to have it up and started and out of my head where it’s been swirling around since the first day Sherri came up with the idea of blogging her cancer experience. And now I’m sort of wondering whether she meant the blog more as therapy for me than for any of you.
In the radiation consultation, it became clear that we were not going to get to surgery this week, and it might not even be next week, but we do, finally, appear to have a plan.
Our next major event is our Thursday 2 pm surgery consult, again with the surgeon we saw that first horrifying Wednesday that now seems very long ago. In that appointment, we hope to nail down a surgery date so we can get to the business of beating this thing. The sooner this is just a story we tell people the better. In case you’re wondering, here’s how I intend to start that story:
“One week, back in 2007, I spent a year in Rochester, Minnesota. . . “
UPDATE 3 May 2007
We met with the surgeon as scheduled today and now have a surgery date of Tuesday, May 8 at St. Mary's Hospital in Rochester. We're not sure what time it will be yet, but we will update the blog as we get information.
We will be taking Emma with us, and my parents will be along to keep her insulated, so I hope no one worries about that. The dogs will also be covered thanks To David Roberts.
GW
Monday, 23 April 2007—For those of you who don’t know, Sherri is a Vice-President of Performance Assessment Services at the Minneapolis-based Data Recognition Corporation. As part of her company’s wellness initiative, Sherri arrived at the Mayo Clinic in Rochester, Minnesota for what was scheduled to be a three-day physical examination. The bulk of the first day was made up of fairly ordinary sorts of tests and evaluations and terminated with a face-to-face physical with one of Mayo’s Internists.
During this examination, the physician was puzzled to see that Sherri’s right lung and diaphragm were being pushed out of place for some reason. He was further surprised to find what he described as a “hard mass” near her stomach, which was, of course, not supposed to be there. The doctor told Sherri that she would need to have a CT scan and that the clinic would attempt to work her into the schedule as soon as possible
Tuesday, 24 April 2007—Late in the day, after she had been seen by a variety of specialists, scheduled in the normal course of the physical, Sherri was called to get her CT scan. Very soon after it was completed, she was informed that the scan identified a 25 cm (later revised to 35 cm—with complete dimensions a bit difficult to describe) tumor. Diagnosticians were immediately convinced that the tumor is a very rare form of cancer called a “retroperitoneal liposarcoma.”
Sherri was informed that she would have a surgical consultation the next morning at 10 am. She called me to tell me what was going on, and I called my mother, who, in a little more than four hours arrived from Toledo to take care of Emma. Thanks Mom.
Wednesday, 25 April 2007—I was able to get to Rochester by about 8:15 and accompanied Sherri to her surgical consultation. Here, we saw the actual film of the CT scan and became aware of exactly how horrifying this tumor is. This large mass stretches across the breadth of Sherri’s Torso, pushing some organs out of its way and engulfing others. The surgeon said that the tumor is very large and would make a long and difficult surgery, but that he could remove it if necessary. He explained that while it is possible that such surgery could be completely successful, it is also possible that he would not be able to remove the entire tumor or that in the process or Sherri might lose a kidney, her spleen, and/or part of her stomach in the effort to remove the mass. The surgeon believed that the logical next step was to seek input from Mayo Clinic oncologists on the possibilities of shrinking the tumor prior to surgery through chemotherapy or radiation.
We left terrified and uncertain of the next steps in the process, waiting for the team that would be involved in Sherri’s treatment to take shape.
Later in the day, we were contacted with our schedule. Friday she would have a biopsy, Monday morning would be her evaluation with a medical oncologist and Monday afternoon would be her consultation with a radiation oncologist.
Thursday, 26 April 2007—Nothing scheduled: very excruciating
Friday, 27 April 2007—The clinic scheduled six hours for Sherri’s biopsy figuring for sedation and recovery time. Those of you who know her best will not be surprised to hear that she completed the biopsy in less than three hours since she refused pain medication or sedatives. The nurses involved with this biopsy were impressed and possibly a little bit disturbed by her refusal to wuss-out.
Now the problem of how to kill two an a half days before seeing the oncologists and finding out what was really going on here. . .
Saturday, 28 April 2007—By some bizarre and lucky coincidence, my aunt, Brooke Davis just opened in a hilarious musical comedy in Minneapolis. And in another stroke of luck, my uncle, Barry, was coming to Minneapolis from Tucson (where they live) to visit her. They very generously invited us to Minneapolis to see Brooke’s show, have dinner, and then they put us up in the unbelievably hip Chambers Hotel in downtown Minneapolis. To give you some idea of how cool this place is, in the restaurant of the hotel is a video art installation that we saw in San Francisco MOMA only nine months ago.
Anyway, I’m sure that we were not much fun to have as company for a night out, but Brooke and Barry helped us pass pleasantly what would have otherwise been a completely unbearable Saturday.
A side note: I know that many readers of this blog live in Minneapolis, and I would really not be doing a complete job as a blogger if I didn’t spend a bit of time talking about Brooke’s show. The musical comedy is called Menopause the Musical and is being performed in theater called The Lab, located at 700 1st St. The show focuses on the trials and tribulations of four women from very different backgrounds who share the common struggle with “the change.” The music consists of re-lyric-ed pop, rock, r&b, and soul hits from the last forty or fifty years of popular music. The songs are hilarious, the physical comedy beautifully executed, and all of the actor/singers are terrifically talented. In the pits of despair as we were, the show still managed to wrench multiple laughs out of both Sherri and me, and I would never have thought that possible. Get your tickets here.
Sunday, 28 April 2007—Drive back to Rochester. Nothing scheduled: very, very excruciating
Monday, 29 April 2007—We arrived at our 9:30 medical oncology evaluation to a bit of bad luck. The pathologist’s report on the biopsy had not yet been completed. Because of this, the oncologist who saw us was able to do little more than give us a general understanding of how, in general, liposarcomas are treated and what sort of options are available. However, he was very careful to explain to us that each case is different and needs to be evaluated and handled differently. Frankly, what it came down to was that he was unable to give us any clear understanding of what we had coming until he had the pathology report. The result of this meeting was to leave us, frankly, even more terrified than we were before our meeting with him.
We sulked around Rochester for about an hour and then returned to our hotel room to try to gather our wits. It was at this point that we got our first remotely decent news in a week. The internist who had been working with Sherri from the beginning of this process called to tell us that the results of the biopsy had made it to the oncologist’s office about five minutes after we left.
According to the internist, the tumor was determined to be a well-differentiated tumor, which basically means that while the tumor is very large and prone to local recurrence, it is of relatively low-grade malignancy and less likely to metastasize. (Peggy, did I understand this right?) Because I was at the time too stupid about cancer to understand remotely what the doc was telling me, he had to explain that this was the best possible news we could have hoped to receive. I believe what he said was (and it was actually kind of cute in his Indian accent), “If I had to have a sarcoma, this is the one I would want.”
At 2 pm we met with the radiation oncologist, a particularly impressive man, who agreed that we had good reason to be encouraged by the results of the cytology, but that biopsies aren’t perfect and that we need to be aware that we won’t know for certain what we are dealing with until it is actually removed and a full pathology is completed.
He was also able to clear up a really important question for us: I’m not sure I’m going to be able to explain this well enough so I hope everyone will bear with me. The physicians at the Mayo Clinic are not like the docs I’ve run into anywhere else. For the most part, these people have an aura of confidence, competence, and brilliance that I have not been around before in a medical setting. It’s sort of like if you had scheduled an hour with a golf pro at the club, and when you showed up your teacher turned out to be Nick Faldo or Vijay Singh. Still, whenever they have shown up to talk to us about Sherri’s case, they all seem just a bit more troubled than Sherri or I have been completely comfortable with. Our radiation guy explained it: There are only a few places in the country really well equipped to deal with sarcomas, the Mayo Clinic being one, but even they see very few of these, and frankly, Sherri’s is the biggest one any of them has ever seen. Impressive, huh?
Anyway, he also made the following points:
1. Given that this is a well-differentiated tumor, he found it unlikely that the medical oncologist would be willing to conduct chemotherapy. He believed that since surgery is certainly in Sherri’s future, it would be unwise to risk weakening her health before surgery in the off-chance that chemo would result in some small shrinkage in the tumor.
2. Given the size of the tumor, it presents a variety of problems with regard radiation therapy. First he would not be able to radiate the entire tumor without risking serious damage to organs that are involved. And (this is the bit that I don’t really understand so if any of my expert pals can clear it up, go for it in the comments) if he radiates the tumor before the surgery, and radiation fails to shrink it, he won’t be able to come back and do radiation at a later date if, for example, the surgery is incapable of getting the whole tumor or if they need to do radiation during the surgery. This stuff is really complicated to me, folks, so I’m pretty sure I’m doing a bad job with it, sorry
3. Given points one and two, he believes that the best course of action is to go after the tumor surgically and clean things up with radiation or chemo if necessary, afterwards.
This was a fairly satisfying consult to Sherri who has said repeatedly over the last week, “I just want this thing out of me,” and was never fully satisfied with my belief that we need to hear as many voices checking in on this as possible before we make any rash decision.
Another side note: “I just want this thing out of me”—I believe she said also this repeatedly the week of August 20, 1995 before Emma was born.
Tuesday 1 May 2007—Today I’m writing this really long blog, not sure whether I’ve been the least bit coherent, knowing that I’m going to post it with virtually no proofreading, just to have it up and started and out of my head where it’s been swirling around since the first day Sherri came up with the idea of blogging her cancer experience. And now I’m sort of wondering whether she meant the blog more as therapy for me than for any of you.
In the radiation consultation, it became clear that we were not going to get to surgery this week, and it might not even be next week, but we do, finally, appear to have a plan.
Our next major event is our Thursday 2 pm surgery consult, again with the surgeon we saw that first horrifying Wednesday that now seems very long ago. In that appointment, we hope to nail down a surgery date so we can get to the business of beating this thing. The sooner this is just a story we tell people the better. In case you’re wondering, here’s how I intend to start that story:
“One week, back in 2007, I spent a year in Rochester, Minnesota. . . “
UPDATE 3 May 2007
We met with the surgeon as scheduled today and now have a surgery date of Tuesday, May 8 at St. Mary's Hospital in Rochester. We're not sure what time it will be yet, but we will update the blog as we get information.
We will be taking Emma with us, and my parents will be along to keep her insulated, so I hope no one worries about that. The dogs will also be covered thanks To David Roberts.
GW
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