Hello again, everybody!
The information we've learned is that tracheal cancer is very rare, and you only really get one shot to get it 'right'. As you know, the plan was to head to Houston to the MD Anderson Cancer Center at the University of Texas to outline a course of treatment. Dr. Berquist spoke with them about Al's situation, but they didn't seem all that interested in his case -- putting it off several weeks. Dr. B doesn'twant to wait that long, so he called a surgeon friend in Wichita, who recommended a specialist at Massachusetts General. His name is DJ Mathisen, and his group specializes in tracheal cancer. When a door closes, a window opens.
If they can't remove the entire tumor via surgery, they won't do surgery at all. Reducing its size doesn't improve the prognosis with this area of cancer. So Al's CT info has been Fed Exed to Boston today, and he's having a PET scan in Wichita on Friday, followed by a heart stress test (just to be sure he's up to surgery; he is) on Monday. Dr. Mathisen will review all this information, and recommend surgery or not.
The scariest news to date is that if he doesn't have successful surgery, he cannot be cured medically. He would receive radiation therapy and chemotherapy here at home to hopefully reduce the tumor and keep him comfortable. I think Dr. Berquist is only giving me as much information as I can chew on at one time; but that little tidbit last night was the toughest one. Hopefully, they will assess him long distance, we'll go to Boston for surgery, come home for some radiation and chemo, and be good as new.
We thought we got through the hard stuff five years ago with his bypass surgery, but that was NOTHING compared to this. EVERYTHING is subject to change at a moment's notice with a simple phone call. I've been on auto-pilot until today, but I'm having a little trouble getting that last bite of information down.
Al's gone off to the grocery store -- he was hungry for cucumbers. And he promised to deliver a Lottery Ticket (long-running joke for the past 18 months) and bring me some apples. My niece loaned us the DVD of 'Ray', so we're going to try to relax and enjoy a movie, and just REST. I think yesterday sorta wore him out, and he was quite busy at work as well, so it's time to rest.
xoxoxo
Sharon
Wednesday, April 27, 2005
Tuesday, April 26, 2005
Update on Al #2
FYI -- the PET scanner in Salina has broken down, so he's been rescheduled til NEXT Wednesday. Or, as Al says, "Hurry up and wait!!!"
Guess it's not as time sensitive as I thought.
Dr. B is still working with MD Anderson (according to his nurse), but I know they won't want to see us til after the PET scan. Looks like my seedlings have a shot of getting in the ground after all!!!
Al had a nice visit with his sister and our family members out in Russell today. I think it was really good for him to just get away from home for a day -- thanks everybody, and especially Cleo. I know the Fudge Brownie Delight I had at Applebee's this afternoon while they ate was good for me!!!
Talk to you soon.
xoxoxo
Sharon
Update on Al #1
If you don't care to get these updates, please reply to me to be removed. I know what a downer this is -- believe me -- so I'll understand.
Frequent e-mail updates worked best for me when Al had bypass surgery in 2000. I will update everybody on this mail list as I have news to share (and access to a computer).
We saw Dr. Berquist today, and Al's diagnosis is squamous cell carcinoma. They aren't positive whether the tumor is inside his trachea, or behind it pushing in.
He's going to have a PET scan on Wednesday afternoon here at our local hospital to see where it really is and whether it's spread, so we'll know what stage of cancer he's in.
Then they want us to go to M D Anderson Cancer Center, which is at the University of Texas in Houston for their evaluation. Cancer in the trachea is evidently very rare, and may be difficult to treat. They're happy to treat us here at home, but none of us want to be second-guessing our decisions down the road. They're working on getting that scheduled, but we're expecting it to happen pretty quick.
Thanks for all your support and encouragement. Please keep Al in yourthoughts, your hearts, your prayers -- whatever works for you.
Sharon
Frequent e-mail updates worked best for me when Al had bypass surgery in 2000. I will update everybody on this mail list as I have news to share (and access to a computer).
We saw Dr. Berquist today, and Al's diagnosis is squamous cell carcinoma. They aren't positive whether the tumor is inside his trachea, or behind it pushing in.
He's going to have a PET scan on Wednesday afternoon here at our local hospital to see where it really is and whether it's spread, so we'll know what stage of cancer he's in.
Then they want us to go to M D Anderson Cancer Center, which is at the University of Texas in Houston for their evaluation. Cancer in the trachea is evidently very rare, and may be difficult to treat. They're happy to treat us here at home, but none of us want to be second-guessing our decisions down the road. They're working on getting that scheduled, but we're expecting it to happen pretty quick.
Thanks for all your support and encouragement. Please keep Al in yourthoughts, your hearts, your prayers -- whatever works for you.
Sharon
Thursday, April 21, 2005
Ed. note: This was the first conversation (via MSN IM) I had about Al's cancer; I forwarded it in its entirety to several dear on-line friends by way of explanation of why I didn't expect to be around for a bit. I've included only MY part of the conversation here.
We got some devastating news today in Al's (DH) bronchoscopy. Been trying to decide who I want to talk to, and whether I want to talk about anything yet.
Al had a bad cold this winter. The cold passed, the cough lingered. Not uncommon for him. A couple of weeks ago, he started coughing up some blood, so I sent him to his Primary Care Physician. Skeered the PCP, so he referred Al to a pulmonary specialist, Dr. Berquist.
The appt with Dr. B was yesterday. He wanted to do a bronchoscopy, where they send a fiber-optic probe down your throat into the lungs to see what's up. Good news -- the lungs are clear, look real healthy, etc. Bad news -- on pulling out the scope, he discovered a mass on his trachea.
The trachea is your 'wind pipe' -- basically the source of all air to your lungs. Al's trachea is about 50% blocked. Knowing this makes a WHOLE lot of things about him since Christmas make sense. Yeah, it's probably cancer. They can't or won't do surgery for it -- I was a little out of it when we were talking about it -- I wasn't lucid enough to really ask good questions, but they'll probably want to start some radiation treatment right away. Even if it's not cancer, I get the idea it's life-threatening.
I fully expected them to find nothing. I wasn't expecting bad news at all, and it hit me like a ton of bricks on my head. They took several 'bites' of this mass for a biopsy, and did a couple of 'washes' (whatever that is) -- all of which are pending in the lab. If we're REAL lucky, they'll have results for us tomorrow, but probably not until Monday. Dr. B told me not to tell him anything more right now than he has a growth-mass-tumor that's blocking his windpipe, because the drugs would affect his thought processes and he wouldn't be able to make sense of it anyway.
But he won't let Al go to work -- until further notice, whenever that is. Al's just pissed he can't go to work because (a) they need him there, and (b) he'll be bored to death at home because he's not supposed to do any work!
I asked Dr. B on a scale of 1 - 5 with 1 being all will be well, and 5 being worst case scenario, and he said "this is definitely a 5; it's very serious stuff". Evidently a tumor on your trachea is VERY rare. I'm thinking that's why they can't do surgery. I have to come up with some good questions before we go back to the doctor.
I just don't even want to tell people about it until we know what's going on and how we're going to treat it. And if Al's even gonna live.
It was pretty cool though -- they showed us the pictures after the scope. The GOOD part of this is that they also brought in a gastroenterologist, who scoped his esophagus and stomach and they are both clean and clear. That seemed to be a big worry for them.
We ran all over town after his test. When we came home, we found out they wanted him to have a CAT scan, so we were home about half an hour, then off for the CAT scan.
All I've wanted to do all day is crawl back into bed and pull the covers over my head. I took the whole day off because I had no idea how Al would react to the meds they gave him -- the various drugs they gave him for the scope and CAT scan. They called it 'conscious sedation'.
He's resting now. Finally. He remembers a little when they started putting the tube in and remembers feeling them pull it out, but nothing else. He did bring up the subject of radiation and chemo this afternoon. I think he's seeing RIGHT through me.
I just don't want to have to be answering a lot of questions and telling and retelling this story, and I know we will be -- I remember it well from his bypass 5 years ago. I'm having such a case of the guilts -- I've been poo-pooing some of his symptoms that, in hindsight, were red flags. I just don't want to imagine my life without him in it. I got through it five years ago and thought we wouldn't have to think about it again any time soon. I know, it's irrational, but I can't help feeling that way.
I talked to my boss this afternoon, and I asked her to tell everybody in the office so we wouldn't have to talk about it until after we see Dr. b again. Hell, he's more worried about ME than he is about himself. I think he already knows at least as much as I do. But I'm not having THAT conversation with him until these drugs are washed out of his system. Al confides in our next-door neighbor, and they had a nice chat over the fence earlier.
I keep forgetting the name of the location this is growing. When Dr. B was telling me, I was thinking he was talking about the larnyx -- your voice box, but he made it very clear it was the trachea.
http://www.cancerhelp.org.uk/help/default.asp?page=5696
Found some reading material.
As for Dr. B, we sorta asked around about him locally before Al saw him. He's highly recommended, and we're both really comfortable with him. He mentioned if necessary we'd bring in an oncologist (if cancer) and look at all possible treatment options.
The {hospital} nurse was SO doom and gloom, and I was trying to keep Al unconcerned and stuff while we were there. She was very pleasant and REALLY considerate of me after the doc talked to me. Found a nun to come be with me while I fell apart. Brought me some PUFFs tissues because the hospital tissues suck and I threatened to go to the van for my Kleenex. Even found me a Diet Pepsi when the lounge only had Diet Coke! But she was just doing her routine for discharge, and she had no idea how much I had (not) told Al.
All I wanted to do was get out of a public room and have a good cry. You know I'm not into CHURCHY things. But naturally the nun pulled me into the chapel. I explained to her that I really was OK, I didn't want to talk, I just needed to have a good cry, though I appreciated her being available. So I basically locked myself into the chapel with my Diet Pepsi and my Puffs and bawled my eyes out.
So when I finally decide I'm done, I go to hit the nearest restroom -- and there's a FIELD TRIP, and it's potty time!!! The teacher took one look at me, walked me to the front of the line and made the girls wait (and be quiet) til I finished in there. LOL I was appreciating the noise so I could REALLY finish crying. And blow my nose. I think there are few things less embarassing than blowing your nose in public. Guess I should put that on the Betcha Didn't Know list, huh?
Hmmm, I don't think they tested his lymph nodes. Hope that's a good sign. I was just reading some threads off that link -- about stages of cancer, etc.
I'm off to watch ER with DH on the LR couch (couldn't think of anacronym for couch!). Hope all is well with you. Please update your address book to show this e-mail addy; I can check it easier away from home, and actually respond quicker via gmail.
I appreciate your support, as I know what kind of people you all are, but I'm just not up for having conversations about this yet. Gimme some extra rest and I'll be ready to go again.
We got some devastating news today in Al's (DH) bronchoscopy. Been trying to decide who I want to talk to, and whether I want to talk about anything yet.
Al had a bad cold this winter. The cold passed, the cough lingered. Not uncommon for him. A couple of weeks ago, he started coughing up some blood, so I sent him to his Primary Care Physician. Skeered the PCP, so he referred Al to a pulmonary specialist, Dr. Berquist.
The appt with Dr. B was yesterday. He wanted to do a bronchoscopy, where they send a fiber-optic probe down your throat into the lungs to see what's up. Good news -- the lungs are clear, look real healthy, etc. Bad news -- on pulling out the scope, he discovered a mass on his trachea.
The trachea is your 'wind pipe' -- basically the source of all air to your lungs. Al's trachea is about 50% blocked. Knowing this makes a WHOLE lot of things about him since Christmas make sense. Yeah, it's probably cancer. They can't or won't do surgery for it -- I was a little out of it when we were talking about it -- I wasn't lucid enough to really ask good questions, but they'll probably want to start some radiation treatment right away. Even if it's not cancer, I get the idea it's life-threatening.
I fully expected them to find nothing. I wasn't expecting bad news at all, and it hit me like a ton of bricks on my head. They took several 'bites' of this mass for a biopsy, and did a couple of 'washes' (whatever that is) -- all of which are pending in the lab. If we're REAL lucky, they'll have results for us tomorrow, but probably not until Monday. Dr. B told me not to tell him anything more right now than he has a growth-mass-tumor that's blocking his windpipe, because the drugs would affect his thought processes and he wouldn't be able to make sense of it anyway.
But he won't let Al go to work -- until further notice, whenever that is. Al's just pissed he can't go to work because (a) they need him there, and (b) he'll be bored to death at home because he's not supposed to do any work!
I asked Dr. B on a scale of 1 - 5 with 1 being all will be well, and 5 being worst case scenario, and he said "this is definitely a 5; it's very serious stuff". Evidently a tumor on your trachea is VERY rare. I'm thinking that's why they can't do surgery. I have to come up with some good questions before we go back to the doctor.
I just don't even want to tell people about it until we know what's going on and how we're going to treat it. And if Al's even gonna live.
It was pretty cool though -- they showed us the pictures after the scope. The GOOD part of this is that they also brought in a gastroenterologist, who scoped his esophagus and stomach and they are both clean and clear. That seemed to be a big worry for them.
We ran all over town after his test. When we came home, we found out they wanted him to have a CAT scan, so we were home about half an hour, then off for the CAT scan.
All I've wanted to do all day is crawl back into bed and pull the covers over my head. I took the whole day off because I had no idea how Al would react to the meds they gave him -- the various drugs they gave him for the scope and CAT scan. They called it 'conscious sedation'.
He's resting now. Finally. He remembers a little when they started putting the tube in and remembers feeling them pull it out, but nothing else. He did bring up the subject of radiation and chemo this afternoon. I think he's seeing RIGHT through me.
I just don't want to have to be answering a lot of questions and telling and retelling this story, and I know we will be -- I remember it well from his bypass 5 years ago. I'm having such a case of the guilts -- I've been poo-pooing some of his symptoms that, in hindsight, were red flags. I just don't want to imagine my life without him in it. I got through it five years ago and thought we wouldn't have to think about it again any time soon. I know, it's irrational, but I can't help feeling that way.
I talked to my boss this afternoon, and I asked her to tell everybody in the office so we wouldn't have to talk about it until after we see Dr. b again. Hell, he's more worried about ME than he is about himself. I think he already knows at least as much as I do. But I'm not having THAT conversation with him until these drugs are washed out of his system. Al confides in our next-door neighbor, and they had a nice chat over the fence earlier.
I keep forgetting the name of the location this is growing. When Dr. B was telling me, I was thinking he was talking about the larnyx -- your voice box, but he made it very clear it was the trachea.
http://www.cancerhelp.org.uk/help/default.asp?page=5696
Found some reading material.
As for Dr. B, we sorta asked around about him locally before Al saw him. He's highly recommended, and we're both really comfortable with him. He mentioned if necessary we'd bring in an oncologist (if cancer) and look at all possible treatment options.
The {hospital} nurse was SO doom and gloom, and I was trying to keep Al unconcerned and stuff while we were there. She was very pleasant and REALLY considerate of me after the doc talked to me. Found a nun to come be with me while I fell apart. Brought me some PUFFs tissues because the hospital tissues suck and I threatened to go to the van for my Kleenex. Even found me a Diet Pepsi when the lounge only had Diet Coke! But she was just doing her routine for discharge, and she had no idea how much I had (not) told Al.
All I wanted to do was get out of a public room and have a good cry. You know I'm not into CHURCHY things. But naturally the nun pulled me into the chapel. I explained to her that I really was OK, I didn't want to talk, I just needed to have a good cry, though I appreciated her being available. So I basically locked myself into the chapel with my Diet Pepsi and my Puffs and bawled my eyes out.
So when I finally decide I'm done, I go to hit the nearest restroom -- and there's a FIELD TRIP, and it's potty time!!! The teacher took one look at me, walked me to the front of the line and made the girls wait (and be quiet) til I finished in there. LOL I was appreciating the noise so I could REALLY finish crying. And blow my nose. I think there are few things less embarassing than blowing your nose in public. Guess I should put that on the Betcha Didn't Know list, huh?
Hmmm, I don't think they tested his lymph nodes. Hope that's a good sign. I was just reading some threads off that link -- about stages of cancer, etc.
I'm off to watch ER with DH on the LR couch (couldn't think of anacronym for couch!). Hope all is well with you. Please update your address book to show this e-mail addy; I can check it easier away from home, and actually respond quicker via gmail.
I appreciate your support, as I know what kind of people you all are, but I'm just not up for having conversations about this yet. Gimme some extra rest and I'll be ready to go again.
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