Well, here I was all excited to send you some GOOD news for a change, and everything changes.
Al had his follow-up with both Dr. Perez-Tamayo and Dr. Beck's PA this morning. All was well, and we got to see digital images of Al's tumor. It's larger than I had thought -- I would say about the size of my fist or a little smaller, and is lower in the neck than I had envisioned, though attached to his trachea very high, just below his larnyx. Yes, medical family members, I got a copy of his lab reports; you'll have to wait til I can scan them and send them to you. Fortunately, all the numbers look real good. His weight is holding, and everything seemed very good, we were on track for chemo tomorrow, and he had his radiation treatment this morning. Their only concern was to ensure he's getting plenty of liquids on board.
We went to lunch, Al brought me back to work, and went home to rest because he didn't sleep much last night (mostly thanks to Max & Mikey playing tag all around and OVER him!). He had put on his gym shorts with a tank top he wears to treatment, and laid down on the couch. His legs got cold, so he pulled one of the throws over himself. He said the cold just worked its way up his body, and the next thing he knew he was shivering. So he covered up better and curled up, expecting it to pass.
It didn't, so he took his temp, and got 101.5*, and -- fortunately -- called me. I called the doc's, went home to get him, saw the docs, they took a culture, and sent him across the street for admission to the hospital. Evidently the incision from his PEGG tube is infected. They have him iced down (literally) in bed right now, and he's covered with a cooling blanket; they're starting an IV of antibiotics. He'll be here for a day or two til it gets cleared up, and Dr. Beck mentioned that his PEGG may have to be removed. They want to ensure the infection doesn't spread to his infuse-a-port, and I would think having that IV pushing antibiotics through it would help prevent that. Oh, yeah, his temp was 105.3* when we got to his room at the hospital.
The nurse tells me that his PEGG tube may need to be REPLACED; they wouldn't want to remove it with treatment still upcoming.
Both PAs and Dr. Beck assured me that although he won't be having chemo or radiation until the infection clears up (as much as a week), it won't affect his long-term treatment; "this is just a bump in the road". So if you tried to reach us today, now you know why you couldn't.
When I told him I was going to the family lounge to send out an update, Al said to be sure to tell everybody hello for him. He also asked not to have any more herbalist advice or salespeople calling him, so even though he's shivering while he's trying to sleep, he still has his sense of humor.
He's in room 237, which would make the phone number in there 785-452-7237, but please wait until at least late morning tomorrow before calling. He needs to get some rest. I'll be here til he sends me packing, then probably head over to the office.
Carrie, sorry I'm going to miss chatting with you tonight. Can't wait to hear all about the house, and the decorating, and the garden, and your move.
Rick, thanks for handling my downspout situation.
Mikey, sorry we didn't get by to see you yesterday; Al was pooped and went home to rest mid-afternoon. And even though he might not have told you what YOU could do to help him out, I'll tell you -- give him a call once a week or so, just to touch base. We so appreciated being included on Saturday night; it was nice to catch up with everybody again. And I'm dying to see Ledger in person; I didn't realize how long it had been since I'd been to your place!!!
I'll sign off for now. Thanks for keeping us in your hearts.
xoxoxo
Sharon
Tuesday, May 31, 2005
Saturday, May 28, 2005
Update on Al #15
Happy Saturday morning, everybody!!! Looks like a beautiful day out there -- 'abundant' sunshine again, with mild wind and a reasonable temp -- so I'm planning to spend the day in the garden, and the pond REALLY needs cleaning. I'm hoping Al will come out and keep me company, or work on his veggies a bit, or something to get him out of the house and enjoying some fresh air. Supposed to rain over the next several days, so we're going to grab this opportunity today.
Al's had a rough couple of days. He was SO happy after chemo Tuesday not to be feeling poorly. Said he would wake up with a queasy stomach, but as soon as he ate something, he felt fine. Then Thursday he must have been running late for treatment, and failed to eat anything, so he's been nauseous for two days. Unfortunately, we managed to double-dose him on his anti-nausea medication, so he slept about 8 hours straight Thursday, then ate well when he finally woke up.
Last night, he finally decided that it wasn't so much the empty stomach, as delayed side effects from the chemo. A nice visit with his niece, Dr. Amber, and his sister, Cleo, evidently set him straight, and he got plenty of water on board during the afternoon yesterday, and was eating normally and feeling well last evening. I'm letting him sleep in this morning -- he's pleased not to have any treatment for THREE days!!!
We've both been looking forward to this weekend -- he's been SO looking forward to Mikey's party (tonight) and Monday's family BBQ at Shelley's -- and hope to get him feeling 'normal' again by Tuesday's treatments.
On Tuesday, he'll have lab work first thing, get his radiation treatment, then see the PA. As long as his blood work is stable, he'll have chemo again on Wednesday. And I'm pretty sure he'll heed everybody's advice to make sure he has SOMETHING in his stomach before any treatment from now on.
Vicki, though you'd enjoy knowing he credits you with convincing him to have the PEG tube installed. When we met with the dietitian, she didn't even notice he had it, and was launching into her spiel about why he should consider it. Our Al just lifts up his shirt and flashes her the line!!! She was so excited!!! When we talked about it, she asked him what convinced him to do it, and he told her your stories of oncology patients you've treated made him decide sooner would be better than later. He also told her that he didn't think he could have tolerated it AFTER he was feeling punk -- that it felt like he'd been doing 1000 situps every morning since he had it installed!!! It must be healing -- and we're getting used to it -- as he's not 'guarding' it so much.
Pam & Bob, I'm so glad your vacation has gone well after its rocky start. Can't wait to see the pics you bring back from your trip with THE KID.
EVERYBODY, when you see or talk with Al, we refer to that 'feeding tube' as the PEG tube. We tend to equate 'feeding tube' as something you have to choose when you're dying. PEG tube makes it sound more like a treatment option. Also, please don't talk to Al about a tracheostomy or those voice box things. Seems to be one of his biggest fears, and they've told us the trach is an absolute last-ditch thing for him, as they'd have to cut right through his tumor to do that.
Randy, thanks for calling Thursday. We know you're busy, and appreciate you thinking about us. I'm sorry Al wasn't feeling up to visiting with you.
We really DO like to hear from you all, whether by e-mail, on the phone, or with a card. I tell people that if healing is ruled by majority, with all the prayers and good wishes, Al should be 100% in no time!!! Our new neighbor across the street sent over a basket with cookies, movie passes and DQ gift certificates. Evidently, everybody's concerned that we go to the movies!!! I'm thinking I'm about due for a chick flick outing with some girlfriends, and assure you that Al and I will be seeing the newest Star Wars release whenever he feels like going.
Well, I've taken up enough time on the computer this morning -- and your time reading this tome!!! Hope each of you gets a sunshiny day today!!!
xoxoxo
Sharon
Al's had a rough couple of days. He was SO happy after chemo Tuesday not to be feeling poorly. Said he would wake up with a queasy stomach, but as soon as he ate something, he felt fine. Then Thursday he must have been running late for treatment, and failed to eat anything, so he's been nauseous for two days. Unfortunately, we managed to double-dose him on his anti-nausea medication, so he slept about 8 hours straight Thursday, then ate well when he finally woke up.
Last night, he finally decided that it wasn't so much the empty stomach, as delayed side effects from the chemo. A nice visit with his niece, Dr. Amber, and his sister, Cleo, evidently set him straight, and he got plenty of water on board during the afternoon yesterday, and was eating normally and feeling well last evening. I'm letting him sleep in this morning -- he's pleased not to have any treatment for THREE days!!!
We've both been looking forward to this weekend -- he's been SO looking forward to Mikey's party (tonight) and Monday's family BBQ at Shelley's -- and hope to get him feeling 'normal' again by Tuesday's treatments.
On Tuesday, he'll have lab work first thing, get his radiation treatment, then see the PA. As long as his blood work is stable, he'll have chemo again on Wednesday. And I'm pretty sure he'll heed everybody's advice to make sure he has SOMETHING in his stomach before any treatment from now on.
Vicki, though you'd enjoy knowing he credits you with convincing him to have the PEG tube installed. When we met with the dietitian, she didn't even notice he had it, and was launching into her spiel about why he should consider it. Our Al just lifts up his shirt and flashes her the line!!! She was so excited!!! When we talked about it, she asked him what convinced him to do it, and he told her your stories of oncology patients you've treated made him decide sooner would be better than later. He also told her that he didn't think he could have tolerated it AFTER he was feeling punk -- that it felt like he'd been doing 1000 situps every morning since he had it installed!!! It must be healing -- and we're getting used to it -- as he's not 'guarding' it so much.
Pam & Bob, I'm so glad your vacation has gone well after its rocky start. Can't wait to see the pics you bring back from your trip with THE KID.
EVERYBODY, when you see or talk with Al, we refer to that 'feeding tube' as the PEG tube. We tend to equate 'feeding tube' as something you have to choose when you're dying. PEG tube makes it sound more like a treatment option. Also, please don't talk to Al about a tracheostomy or those voice box things. Seems to be one of his biggest fears, and they've told us the trach is an absolute last-ditch thing for him, as they'd have to cut right through his tumor to do that.
Randy, thanks for calling Thursday. We know you're busy, and appreciate you thinking about us. I'm sorry Al wasn't feeling up to visiting with you.
We really DO like to hear from you all, whether by e-mail, on the phone, or with a card. I tell people that if healing is ruled by majority, with all the prayers and good wishes, Al should be 100% in no time!!! Our new neighbor across the street sent over a basket with cookies, movie passes and DQ gift certificates. Evidently, everybody's concerned that we go to the movies!!! I'm thinking I'm about due for a chick flick outing with some girlfriends, and assure you that Al and I will be seeing the newest Star Wars release whenever he feels like going.
Well, I've taken up enough time on the computer this morning -- and your time reading this tome!!! Hope each of you gets a sunshiny day today!!!
xoxoxo
Sharon
Tuesday, May 24, 2005
Update on Al #14
Hi all!!! Seems like forever since I last sent an update, yet it's only been a few days.
Al was still in a bad mood Saturday, which was only made worse when we left the hospital -- the PEG tube was leaking. Being the inventive guy that he is, he managed to jenny-rig it til Monday, when the doc's office told us to go back to the hospital for a new cap. Replaced on Monday, no more leaks. YEAH!!!
He was pretty sore and miserable from the incision site, so he pretty much vegged out this weekend. Finally turned on the A/C, so we're getting good rest and he's more comfortable.
Monday seemed like an endless stream of appointments, though we only saw the chemo counselor and had his 'v-sim' for radiation. The chemo counselor spent about an hour telling us all the awful things about the chemicals they'll be using -- and all the other chemicals they're going to use so that won't happen. Then she had Al sign a consent form to allow them to do it!!! =)
I hadn't planned to go with him to the v-sim, but he had other ideas. They actually let me go back in the room with him, so I got to see his 'Freddie Krueger' mask (it really does kinda look like that!), and the equipment they'll use to radiate him. It's scarier to imagine than it is in real life; it's rather kewl in person!!!
Today he had his first treatment of both chemo and radiation, and I'm happy to say it went very smoothly. The only effect he's feeling is a sort of dry mouth, which he said was from the chemo because he felt it before the radiation. He seems to be a bundle of energy and is very ornery -- you know, more his normal self. Let's just hope it lasts.
We're off to our office BBQ send-off of one of the PTs who's leaving at the end of the week. Should be fun, at the home of my boss.
Kroeger, I need your home e-mail address -- you know I don't remember anything unless I write it down!!! =) The way I remembered it, the messages get bounced back to me.
Ed, REALLY, we didn't name the cancer Walter because of you. Until yesterday, we'd sort of forgotten your first name was Walter!!! I think I mentioned, I got it from the movie -- On Golden Pond -- as in the fish who reminds Henry Fonda of his brother-in-law, because "he's a mean, nasty, rotten sonofabitch!"
Rich, I meant to call you. Would you rather I drop off the laptop, or do you want to pick it up? Pick one.
Well, I'd better get going. We're looking forward to a nice evening.
xoxoxo
Sharon
Al was still in a bad mood Saturday, which was only made worse when we left the hospital -- the PEG tube was leaking. Being the inventive guy that he is, he managed to jenny-rig it til Monday, when the doc's office told us to go back to the hospital for a new cap. Replaced on Monday, no more leaks. YEAH!!!
He was pretty sore and miserable from the incision site, so he pretty much vegged out this weekend. Finally turned on the A/C, so we're getting good rest and he's more comfortable.
Monday seemed like an endless stream of appointments, though we only saw the chemo counselor and had his 'v-sim' for radiation. The chemo counselor spent about an hour telling us all the awful things about the chemicals they'll be using -- and all the other chemicals they're going to use so that won't happen. Then she had Al sign a consent form to allow them to do it!!! =)
I hadn't planned to go with him to the v-sim, but he had other ideas. They actually let me go back in the room with him, so I got to see his 'Freddie Krueger' mask (it really does kinda look like that!), and the equipment they'll use to radiate him. It's scarier to imagine than it is in real life; it's rather kewl in person!!!
Today he had his first treatment of both chemo and radiation, and I'm happy to say it went very smoothly. The only effect he's feeling is a sort of dry mouth, which he said was from the chemo because he felt it before the radiation. He seems to be a bundle of energy and is very ornery -- you know, more his normal self. Let's just hope it lasts.
We're off to our office BBQ send-off of one of the PTs who's leaving at the end of the week. Should be fun, at the home of my boss.
Kroeger, I need your home e-mail address -- you know I don't remember anything unless I write it down!!! =) The way I remembered it, the messages get bounced back to me.
Ed, REALLY, we didn't name the cancer Walter because of you. Until yesterday, we'd sort of forgotten your first name was Walter!!! I think I mentioned, I got it from the movie -- On Golden Pond -- as in the fish who reminds Henry Fonda of his brother-in-law, because "he's a mean, nasty, rotten sonofabitch!"
Rich, I meant to call you. Would you rather I drop off the laptop, or do you want to pick it up? Pick one.
Well, I'd better get going. We're looking forward to a nice evening.
xoxoxo
Sharon
Friday, May 20, 2005
Update on Al #13
Happy Friday, friends and family!!!
FYI -- Al had the PEGG tube inserted this morning, followed by the port-a-cath. He was NOT the least bit happy when Dr. Alsop informed us Al would be staying overnight at the hospital, let me tell you!!! He was even unhappier when he heard he only gets liquids today -- at least he can have his beloved Dr. Pepper. He's STILL not happy, and sent me on my merry little way. Frankly, with the mood he's in, I was happy to take my leave. =)
So I've run some errands that need to be done during business hours, and am going to catch a little nap, then head to the office to make up some time I've been off. And swing back by the hospital to take him something to sleep in. He has his cell phone, and he's at SRHC (785-452-7000) in room 217 if you wanna call him or stop by. Visiting hours are 8:30 am to 8:30 pm.
We watched a fun little video (featuring the OLDEST woman in the world!!!) about care and feeding of a PEGG tube, and they're going to wean him into some nutrition later tonight. Mostly they'll do that to ensure it's in the proper position, and working correctly, but also to 'teach' his stomach to accept liquids from that site.
We're having record-setting heat here in Kansas this week, so I told him to enjoy the A/C and relax. (We haven't turned our A/C on at home yet; commonly don't until well into June.) So I'll be getting the pond cleaned out tomorrow, for sure!!!
Hope all is well in your corner of the world.
xoxoxo
Sharon
Wednesday, May 18, 2005
Update on Al #12
Hi, all! Sorry it's been so long between updates, but the latest news has taken a little time to digest and settle. Vicki (RN) was generous with her time and knowledge, and accompanied us to both doctors' appointments this week. Then we spent some time over a meal with our 'interpretor' which really helped us understand a little better. (Vic, we forgot to look at the pics today!)
We met with Dr. Claudia Perez-Tamayo, who is the only radiation oncologist in town. While she is planning to be very aggressive in treating Al, we weren't terribly pleased with her. Maybe it's a chick thing, but she wanted to sugar-coat things a bit more than we like, so I had to get a little witchy on her and explain how we work. Give us all the details, the worse case scenario, the scary details; tell us the probabilities of what you expect to take place; then we'll place our hopes above THAT line, work it through, and come out swinging. I'm still trying to figure out who 'Brad' on her staff reminds me of; sorta creepy.
They whisked Al away to start calibrating where the radiation should be aimed. They made him a 'Freddie Krueger' mask and took another CT. This mask covers Al's entire head and BOLTS to the table -- its purpose is to hold his head in proper position during radiation. He'll have to wear it for the duration (15 minutes) of his radiation treatments, which will be 5x/week for 7-8 weeks starting Monday. He's not thrilled about the mask -- makes him feel claustrophobic.
DISCLAIMER: THIS NEXT PARAGRAPH IS A REAL DOWNER!!!
To put it frankly, radiation and chemo either cures this, or the cancer will kill Al (by blocking his trachea, and cutting off his air supply). As we stand, he has about a 50/50 chance for cure. She believes the cancer started higher (just below his vocal cords) and has worked down, which is what improved the odds. She explained that they can't radiate that area of the body without having SOME effects on the esophagus, and highly recommended he have a PEG (feeding) tube installed, whereby he could be funneled nutrition and hydration when it hurt too much to swallow. Understandably, this freaked us BOTH out a little -- especially Al. She also recommended a port-a-cath, which is a device implanted under the skin near the collarbone which allows direct access to a vessel -- they can use that for drawing blood, giving chemo and IVs, and basically anything else they'd need to stick him for. Administering chemo can be damaging to the veins, and he's always been a tough stick, so that one was a no-brainer.
OK, back to your regularly scheduled update!!!
We met with Dr. Larry Beck, the oncologist who will be in charge of chemotherapy, today. We liked him better -- he's a real straight shooter, "you're gonna figure this stuff out somewhere along the line, so you might as well be prepared". He talked about the different drugs, and the various ways they would do everything possible to keep Al as comfortable as possible throughout chemo. His staff is a hoot, so we'll fit right in there. He'll be getting chemo once a week for 6 weeks starting Tuesday. It takes 3-4 hours to administer the chemo.
So it was a couple of rough evenings at the Steponick household, but we had some of those difficult conversations we were needing to have, and we're more back to normal than we've been since his diagnosis -- not even a month ago. Seems like an eternity! He's being very ornery again, and has decided he needs to get this and that and this other thing done around the house while he still feels well enough to do them.
He has to see a dentist tomorrow and have his teeth cleaned very thoroughly. They'll give him a prescription flouride rinse to use, which will protect his teeth during treatment. Otherwise, "they'll break off and fall out".
He's scheduled at the hospital for Friday morning to have the port and the PEG installed, but it'll be with that conscious sedation like they did for the bronchoscopy, so he should be home early to mid-afternoon.
We're meeting with some counselor on Monday to hear all about chemo and home care and I don't know what else. The Cancer Center also has a counselor on board, and I spoke with her for a bit today; she's an excellent resource for benefits and care, so it's good to know who to start with. That woman is WIRED in this town!
I went back to work on Tuesday, but as you can tell, I haven't managed to be there a great deal yet. Fortunately, they've all been fabulous -- about letting me off when I need it, as I need it AND being incredibly supportive and caring. And my co-workers are a considerate group of hug-givers -- even on request!!!
Meanwhile, Al's appetite is real strong (he enjoyed Mary's stuffed pork chops last night), and you'd never know he was sick except most of his beard (of 5 years) is missing, and he has a nasty little cough here and there. Dr. Perez-Tamayo told him NOT to shave (though I don't remember exactly why), so he'll have no problem with complying to that one. And not to mow, so I have to get back into practice of mowing. Fresh air, sunshine and exercise. Whoopie!
Nate, I hope it stops raining soon!!! Or at least gives you a few thunderboomers so you feel at home!!! There are some incredible clouds out my window to the southeast tonight; made me think of you missing the storms. Al says he would have to strangle you if you give up one MINUTE in Germany on his account. Enjoy the experience, send lots of photos, and come home with lots of fun stories to tell us. Shelley has been asking about you; drop her a note already!!! And thanks for the postcard. By the way, gardens and landscapes look much more crisp and incredible when they're wet and/or it's overcast, so get out there and send me some pictures!!!
Pam, thanks for the cake via Shelley!!! She FORCED me to eat a piece in her presence, and it's definitely better than the last one I made -- and not burned, either!!! LOL It's about the only thing that's sounded good since we got home.
Guys, I'm sorry to the people who haven't been getting these updates directly. If you know of anybody else, please don't keep forwarding them; send me the e-mail of the person you're sending it to, so I can add them in.
Mom, I don't have Fosdicks current e-mail; do you? Have a good time in Topeka!!!
Vic, thanks for the card; I treasure the message -- and you. We're so blessed with supportive family and friends!!!
Marcia, hope you're enjoying Texas, and find your parents doing well.
Sunroomers, I'm sorry I'm no help, but I hope things get up and working right real soon. Gotta love MSN!!!
Sorry, all, I'm gonna sign off and hit the hay. Fortunately, sleep has NOT been a problem. Thanks again for all your support -- in person, on the phone, via e-mail & IM, and long distance; it really does help!!!
xoxoxo
Sharon
We met with Dr. Claudia Perez-Tamayo, who is the only radiation oncologist in town. While she is planning to be very aggressive in treating Al, we weren't terribly pleased with her. Maybe it's a chick thing, but she wanted to sugar-coat things a bit more than we like, so I had to get a little witchy on her and explain how we work. Give us all the details, the worse case scenario, the scary details; tell us the probabilities of what you expect to take place; then we'll place our hopes above THAT line, work it through, and come out swinging. I'm still trying to figure out who 'Brad' on her staff reminds me of; sorta creepy.
They whisked Al away to start calibrating where the radiation should be aimed. They made him a 'Freddie Krueger' mask and took another CT. This mask covers Al's entire head and BOLTS to the table -- its purpose is to hold his head in proper position during radiation. He'll have to wear it for the duration (15 minutes) of his radiation treatments, which will be 5x/week for 7-8 weeks starting Monday. He's not thrilled about the mask -- makes him feel claustrophobic.
DISCLAIMER: THIS NEXT PARAGRAPH IS A REAL DOWNER!!!
To put it frankly, radiation and chemo either cures this, or the cancer will kill Al (by blocking his trachea, and cutting off his air supply). As we stand, he has about a 50/50 chance for cure. She believes the cancer started higher (just below his vocal cords) and has worked down, which is what improved the odds. She explained that they can't radiate that area of the body without having SOME effects on the esophagus, and highly recommended he have a PEG (feeding) tube installed, whereby he could be funneled nutrition and hydration when it hurt too much to swallow. Understandably, this freaked us BOTH out a little -- especially Al. She also recommended a port-a-cath, which is a device implanted under the skin near the collarbone which allows direct access to a vessel -- they can use that for drawing blood, giving chemo and IVs, and basically anything else they'd need to stick him for. Administering chemo can be damaging to the veins, and he's always been a tough stick, so that one was a no-brainer.
OK, back to your regularly scheduled update!!!
We met with Dr. Larry Beck, the oncologist who will be in charge of chemotherapy, today. We liked him better -- he's a real straight shooter, "you're gonna figure this stuff out somewhere along the line, so you might as well be prepared". He talked about the different drugs, and the various ways they would do everything possible to keep Al as comfortable as possible throughout chemo. His staff is a hoot, so we'll fit right in there. He'll be getting chemo once a week for 6 weeks starting Tuesday. It takes 3-4 hours to administer the chemo.
So it was a couple of rough evenings at the Steponick household, but we had some of those difficult conversations we were needing to have, and we're more back to normal than we've been since his diagnosis -- not even a month ago. Seems like an eternity! He's being very ornery again, and has decided he needs to get this and that and this other thing done around the house while he still feels well enough to do them.
He has to see a dentist tomorrow and have his teeth cleaned very thoroughly. They'll give him a prescription flouride rinse to use, which will protect his teeth during treatment. Otherwise, "they'll break off and fall out".
He's scheduled at the hospital for Friday morning to have the port and the PEG installed, but it'll be with that conscious sedation like they did for the bronchoscopy, so he should be home early to mid-afternoon.
We're meeting with some counselor on Monday to hear all about chemo and home care and I don't know what else. The Cancer Center also has a counselor on board, and I spoke with her for a bit today; she's an excellent resource for benefits and care, so it's good to know who to start with. That woman is WIRED in this town!
I went back to work on Tuesday, but as you can tell, I haven't managed to be there a great deal yet. Fortunately, they've all been fabulous -- about letting me off when I need it, as I need it AND being incredibly supportive and caring. And my co-workers are a considerate group of hug-givers -- even on request!!!
Meanwhile, Al's appetite is real strong (he enjoyed Mary's stuffed pork chops last night), and you'd never know he was sick except most of his beard (of 5 years) is missing, and he has a nasty little cough here and there. Dr. Perez-Tamayo told him NOT to shave (though I don't remember exactly why), so he'll have no problem with complying to that one. And not to mow, so I have to get back into practice of mowing. Fresh air, sunshine and exercise. Whoopie!
Nate, I hope it stops raining soon!!! Or at least gives you a few thunderboomers so you feel at home!!! There are some incredible clouds out my window to the southeast tonight; made me think of you missing the storms. Al says he would have to strangle you if you give up one MINUTE in Germany on his account. Enjoy the experience, send lots of photos, and come home with lots of fun stories to tell us. Shelley has been asking about you; drop her a note already!!! And thanks for the postcard. By the way, gardens and landscapes look much more crisp and incredible when they're wet and/or it's overcast, so get out there and send me some pictures!!!
Pam, thanks for the cake via Shelley!!! She FORCED me to eat a piece in her presence, and it's definitely better than the last one I made -- and not burned, either!!! LOL It's about the only thing that's sounded good since we got home.
Guys, I'm sorry to the people who haven't been getting these updates directly. If you know of anybody else, please don't keep forwarding them; send me the e-mail of the person you're sending it to, so I can add them in.
Mom, I don't have Fosdicks current e-mail; do you? Have a good time in Topeka!!!
Vic, thanks for the card; I treasure the message -- and you. We're so blessed with supportive family and friends!!!
Marcia, hope you're enjoying Texas, and find your parents doing well.
Sunroomers, I'm sorry I'm no help, but I hope things get up and working right real soon. Gotta love MSN!!!
Sorry, all, I'm gonna sign off and hit the hay. Fortunately, sleep has NOT been a problem. Thanks again for all your support -- in person, on the phone, via e-mail & IM, and long distance; it really does help!!!
xoxoxo
Sharon
Sunday, May 15, 2005
Update on Al #11
Well, Dorothy said it best: "There's no place like home!" We only wished for magical ruby slippers (instead of 6 hours on a plane), and that all this had only been a dream!!!
Cleo & Don's timing at the airport couldn't have been better yesterday, and we had a nice lunch to catch up after the trip. Then we were treated to Don's gourmet brownies, and a tour of Cleo's beautiful garden. And I now have a home for those too-wild-for-me 'foam flower' roses out front if I don't come up with one in my yard!
Shelley and the Camerons have done a great job of looking out for our home and kitties, thanks so much!!! The 'Chasing Rainbows' Iris are on their second bud of blooms; the white yarrow off the patio has gone NUTS, the wild daisies out front are in full bloom (and spreading to Ed and Carol's front yard!); the Joseph's Coat rose is glorious, and my peonies are blooming! Their scent is overwhelmingly glorious and better than anything you can get at the florist!!! It was a fabulous welcome home gift, as is the beautiful weather. And you know me, after this update and a shower (in my OWN bathroom!), I'm out to the garden.
Shelley also cleaned the things that were bothering me while we were gone, and called with a full update on THE KID last night. Thanks, kiddo!!!
Pamela Ann, I can't BELIEVE you raised a Potter girl who'd never made Potter Chocolate Cake!!! Thanks for the thought; I'm looking forward to trying her first effort later today.
Doug and Julie, thanks for the offers of housing in KC. Looks like we're going to start here, and see where that leads. But I've got those offers in my back pocket if we need them.
Joy, I hope things are looking a little brighter for you this morning. You're in my thoughts.
Carrie, I'm looking forward to an update on your house.
Kim, I'm so sorry we didn't hook up on this trip. I meant to call you on Friday, but didn't get it done. Another time.
Nate, got your postcard. Can't wait to see all your pics from Germany. I have your album here, and hope to whip it up this week. Life intrudes on my best intentions!!!
Tami and Marcia, I can't wait to hear from you again soon. Hope you're having a wonderful visit; wish I were in Texas!!! =)
We also came home to a refrigerator FULL of incredible gourmet food, courtesy of my 'foodie' friend, Mary. Thanks so much, Mary; Al enjoyed enchiladas last night and actually showed some restraint and didn't sample everything you brought.
Al and I had really good conversations Friday and on the plane Saturday about Walter, treatment and care. We toured around the hospital (because we missed the 11:30 shuttle and the next one wasn't til 2:30), and I made a point to meet Diane in Dr. Mathisen's office; she had been out the previous two days, and had been so considerate and caring in making arrangements there, I wanted to thank her in person. Once we got back to the hotel, we snoozed off and on all day, and went over to 99 for a good meal. Spent the rest of the evening packing, resting and doing a little laundry. It was nice to relax together a bit.
Flights were smooth, though Marcia, you would have had a heart attack with our landing in Atlanta. Al thought it was really rough; I'd call it bumpy! Then the pilot comes on with her announcement, and Al comments, "That explains it! Woman driver!!!"
We lazed around last night, and Al visited with Khyle (Jordan's daddy and Randy's son) from the corner, as they've put their house on the market and bought a place in the country. I had a walkabout in the garden, and we turned in early. We both got a good night's sleep -- I think Al's first good sleep in 3-4 weeks -- and awoke feeling refreshed and normal for the first time in a while. If the grass is dry enough, I'll probably mow later.
I hope you all don't mind the photo link. You have to sign in, but they won't send you a bunch of spam or anything. I need to add captions, but the shots of Boston were taken from the 19th story window of Al's hospital room. When we were traveling to Boston, Al complained that he'd be stuck with hospital food while I was touring Boston and eating great seafood. I reminded him I'd be right there at the hospital with him, and he made me promise to tour Boston on his behalf, and bring it back to him in photos. That handful is the extent of the photos I took in Boston! I wanted a closer shot of the MGH sign (on the tall white building), but the Security team nearly tackled me, and told me I couldn't take pictures there!!!
I'd never seen a hospital with a queue of cabs, with the main entrance is just next door to the ER entrance. I hadn't considered the security implications of somebody taking pics of such an area, but after Oklahoma City, it's understandable.
Thanks again for all your caring and support. We'll just be taking on this challenge, day by day, one at a time. We both feel truly blessed to have all of you right here with us, propping us up as we go along.
xoxoxo
Sharon Steponick
Eternal Optimist, still on duty
Friday, May 13, 2005
Update on Al #10
7:15 am: Well, this morning is bittersweet. Fortunately, the oncologist, Dr. Liu, came BACK to the hospital last night in order to consult with us. Like every doctor we've met, he gave us all the information he has available, all the nasty possibilities along with all the good possibilities.
As you know, they were not able to resect Al's trachea; the growth of the tumor is too involved in the trachea to be successful with a resection. I'm thankful Dr. Mathiesen knows the limitations of this procedure, and elected not to try, as he told me they could work on him all day and be unsuccessful, which meant certain death. Reducing the tumor by surgery -- in their experience -- has not improved outcomes like it can with ovarian or cervical cancer, and it puts the patient's body through more trauma; in simple words (theirs), "it's not worth the risk".
Our next step is to check out of MGH (this morning) and go home (tomorrow morning). We'll be bringing all his results home with us to share with a radiologist and oncologist. Dr. Liu kept reassuring us this CAN be cured, but we're going to need a radiologist that will separate tracheal cancer from the treatment of lung cancer or even esophogeal cancer. The treatment (a combination of radiology and chemotherapy, preferably at the same time to achieve positive results) will have to be very specifically focused on this tumor and VERY aggressive if it is to be successful. I'll be on the phone later this morning with Dr. Berquist, and we'll probably be at least CONSULTING at KU Med Center in Kansas City, if not receiving all this treatment there.
Amber, do all the research you can to find us THE GUY back home who has the confidence to admit he's never treated tracheal cancer, but the willingness to accept recommendations from MGH. Better yet, let's have a woman; we're more willing to admit we may not know everything!!!
Al could be treated here at MGH, but we're talking 6-8 weeks of treatments 5 days/week. In addition to the significant financial burden, Dr. Liu stressed that we need to be at home, where our support system exists. After the day we had yesterday, I'm going to say I believe he's correct. I know you're all only a phone call, e-mail or IM away, but we might as well be on the moon. LOL
Luckily, I had been chatting the morning away (imagine that!) in the waiting room with a couple of wonderful ladies from upper New York State (whose husband was getting a liver transplant; keep the faith, Cleo!), so I was able to be soothed -- and hugged -- by some very caring strangers.
Evidently I freaked out my family with yesterday's e-mail, and my youngest nephew Josh made quick arrangements to fly my sister Vicki (the RN) here to Boston, just to be here for me. I love that in a family!!!
I took the next-to-last shuttle back to the hotel instead of spending more time in the hospital. Al was feeling MUCH better by the time he got up to his room, and once he got a Dr. Pepper or two into his system, he was back to his normal ornery self!!! So I left him in the company of his roommate Phil -- feature a smaller, east-coast version of Daddy who sorta looked like an older George Carlin -- who evidently kept him up most of the night, coughing.
Hope and pray now that we can actually get treated at the new Cancer Center in Salina. Maybe one of their new recruits is familiar with trachea cancer.
12:46 pm: Well things look a little brighter. I missed Dr. Mathisen by a few minutes on arrival at MGH this morning (oh, they tell me that also stands for Man's Greatest Hospital!). Al actually admitted to me the oncologist scared him last night, but Dr. M reassured him that they've had good experience with chemotherapy on this type of tumor.
I've already heard back from Dr. Berquist's office, and he's already been working the radiation/chemo angle from home. The consensus is for us to see Dr. Perez-Tamayo right there at home on Monday; she's a radiology oncologist, and well-reknowned in our region. I believe she treated my other sister, Pam, last year. And he has an appointment with the local oncologist, Larry Beck (a good sign???), on Thursday. So nobody's dragging their feet, and Dr. Liu gave us a good list of questions to ask and challenges to present to them.
Vicki, if you want to drive over for one or both of those appointments, that's fine. We'll talk over the weekend.
Beaner, I'm pretty sure it's 'thatothersharon', my nickname on every other site on the web I visit.
Pam, thanks for the long talk last night. It was very therapeutic and cleansing for me -- just what I needed (other than the chocolate milk and pop-tarts!).
Karen, I'll give you a call Sunday. I'd like to hear what Drs. Berquist and Perez-Tomayo have to say on Monday before I come back to the office. Tell Matt I'll bring him cookies for holding down the fort in my absence!!! (Baking cookies is very therapeutic for me.)
Mary, Al's wondering what's going to be in the freezer when he gets home -- he's had a voracious appetite the last 24 hours!!!
Girls, catch you on IM later!!!
So that's it from Boston. We'll be heading back to the hotel in an hour or so then hitting the 99 for a GOOD meal before settling in for the evening.
xoxoxo
Sharon
As you know, they were not able to resect Al's trachea; the growth of the tumor is too involved in the trachea to be successful with a resection. I'm thankful Dr. Mathiesen knows the limitations of this procedure, and elected not to try, as he told me they could work on him all day and be unsuccessful, which meant certain death. Reducing the tumor by surgery -- in their experience -- has not improved outcomes like it can with ovarian or cervical cancer, and it puts the patient's body through more trauma; in simple words (theirs), "it's not worth the risk".
Our next step is to check out of MGH (this morning) and go home (tomorrow morning). We'll be bringing all his results home with us to share with a radiologist and oncologist. Dr. Liu kept reassuring us this CAN be cured, but we're going to need a radiologist that will separate tracheal cancer from the treatment of lung cancer or even esophogeal cancer. The treatment (a combination of radiology and chemotherapy, preferably at the same time to achieve positive results) will have to be very specifically focused on this tumor and VERY aggressive if it is to be successful. I'll be on the phone later this morning with Dr. Berquist, and we'll probably be at least CONSULTING at KU Med Center in Kansas City, if not receiving all this treatment there.
Amber, do all the research you can to find us THE GUY back home who has the confidence to admit he's never treated tracheal cancer, but the willingness to accept recommendations from MGH. Better yet, let's have a woman; we're more willing to admit we may not know everything!!!
Al could be treated here at MGH, but we're talking 6-8 weeks of treatments 5 days/week. In addition to the significant financial burden, Dr. Liu stressed that we need to be at home, where our support system exists. After the day we had yesterday, I'm going to say I believe he's correct. I know you're all only a phone call, e-mail or IM away, but we might as well be on the moon. LOL
Luckily, I had been chatting the morning away (imagine that!) in the waiting room with a couple of wonderful ladies from upper New York State (whose husband was getting a liver transplant; keep the faith, Cleo!), so I was able to be soothed -- and hugged -- by some very caring strangers.
Evidently I freaked out my family with yesterday's e-mail, and my youngest nephew Josh made quick arrangements to fly my sister Vicki (the RN) here to Boston, just to be here for me. I love that in a family!!!
I took the next-to-last shuttle back to the hotel instead of spending more time in the hospital. Al was feeling MUCH better by the time he got up to his room, and once he got a Dr. Pepper or two into his system, he was back to his normal ornery self!!! So I left him in the company of his roommate Phil -- feature a smaller, east-coast version of Daddy who sorta looked like an older George Carlin -- who evidently kept him up most of the night, coughing.
Hope and pray now that we can actually get treated at the new Cancer Center in Salina. Maybe one of their new recruits is familiar with trachea cancer.
12:46 pm: Well things look a little brighter. I missed Dr. Mathisen by a few minutes on arrival at MGH this morning (oh, they tell me that also stands for Man's Greatest Hospital!). Al actually admitted to me the oncologist scared him last night, but Dr. M reassured him that they've had good experience with chemotherapy on this type of tumor.
I've already heard back from Dr. Berquist's office, and he's already been working the radiation/chemo angle from home. The consensus is for us to see Dr. Perez-Tamayo right there at home on Monday; she's a radiology oncologist, and well-reknowned in our region. I believe she treated my other sister, Pam, last year. And he has an appointment with the local oncologist, Larry Beck (a good sign???), on Thursday. So nobody's dragging their feet, and Dr. Liu gave us a good list of questions to ask and challenges to present to them.
Vicki, if you want to drive over for one or both of those appointments, that's fine. We'll talk over the weekend.
Beaner, I'm pretty sure it's 'thatothersharon', my nickname on every other site on the web I visit.
Pam, thanks for the long talk last night. It was very therapeutic and cleansing for me -- just what I needed (other than the chocolate milk and pop-tarts!).
Karen, I'll give you a call Sunday. I'd like to hear what Drs. Berquist and Perez-Tomayo have to say on Monday before I come back to the office. Tell Matt I'll bring him cookies for holding down the fort in my absence!!! (Baking cookies is very therapeutic for me.)
Mary, Al's wondering what's going to be in the freezer when he gets home -- he's had a voracious appetite the last 24 hours!!!
Girls, catch you on IM later!!!
So that's it from Boston. We'll be heading back to the hotel in an hour or so then hitting the 99 for a GOOD meal before settling in for the evening.
xoxoxo
Sharon
Thursday, May 12, 2005
Update on Al #9
Found the computer lab!!!
Dr. Mathisen just called from the surgical suite. They will NOT be able to do any surgery to help this tumor. Al and I debated last night whether we heard him say they'd take what they could of the tumor even if they can't resect, but the fact is they can't resect, and 'de-bulking' the tumor (reducing the size of the tumor) doesn't help in these types of cases.
The tumor involves approximately 5.2 cm of the trachea, and Al's trachea is only about 11 cm long, so that's far more than what they're comfortable resecting with any success. His airway is 40-50% blocked from the tumor in one way or another, however, so we'll have to be mindful of that fact.
Al will be out of recovery in an hour or so, and moved into a regular room (not ICU) after recovery. Dr. Mathisen will be in to see us in the next couple of hours, and I'll have more information then. His plan is to hook us up with oncology and radiotherapy to determine a course of treatment which can be performed back home. Contrary to our earlier understanding, this type of tumor MAY be overcome by radiation and chemotherapy. The way he explained it to us yesterday is that everybody will respond to chemo and radiation to SOME degree for SOME period of time, with varying degrees of success.
Not to worry, I recognize this is probably a long shot for success. Al knows that too. But the silver lining is that it MAY work --that's all. I'll have more information later in the day, and will send out an update as soon as possible.
If you have any specific questions or suggestions for questions I should ask, please reply right away. I'm going to go find a quiet cupboard to have a long cry, wash my face, and go see Al.
'Talk' to you soon.
xoxoxo
Sharon
Dr. Mathisen just called from the surgical suite. They will NOT be able to do any surgery to help this tumor. Al and I debated last night whether we heard him say they'd take what they could of the tumor even if they can't resect, but the fact is they can't resect, and 'de-bulking' the tumor (reducing the size of the tumor) doesn't help in these types of cases.
The tumor involves approximately 5.2 cm of the trachea, and Al's trachea is only about 11 cm long, so that's far more than what they're comfortable resecting with any success. His airway is 40-50% blocked from the tumor in one way or another, however, so we'll have to be mindful of that fact.
Al will be out of recovery in an hour or so, and moved into a regular room (not ICU) after recovery. Dr. Mathisen will be in to see us in the next couple of hours, and I'll have more information then. His plan is to hook us up with oncology and radiotherapy to determine a course of treatment which can be performed back home. Contrary to our earlier understanding, this type of tumor MAY be overcome by radiation and chemotherapy. The way he explained it to us yesterday is that everybody will respond to chemo and radiation to SOME degree for SOME period of time, with varying degrees of success.
Not to worry, I recognize this is probably a long shot for success. Al knows that too. But the silver lining is that it MAY work --that's all. I'll have more information later in the day, and will send out an update as soon as possible.
If you have any specific questions or suggestions for questions I should ask, please reply right away. I'm going to go find a quiet cupboard to have a long cry, wash my face, and go see Al.
'Talk' to you soon.
xoxoxo
Sharon
Wednesday, May 11, 2005
Update on Al #8
Thanks so much for all your e-mails!!! It really helps to remember there are lots of people across the country keeping us closeto their hearts.
Al particularly had a long day today -- nearly 12 hours at the hospital running between 6 appointments in six separate buildings --intake and lab, history with Dr. Mathiesen's PA (he could be a Mounday, but more about him later!), followed by a tracheal x-ray, chest x-ray, CT scan (that took TWO hours!), lunch at 4:45, followed by an appointment/first meeting with Dr. Mathisen.
I've been telling myself I should call people to soothe my nerves -- the doctor scared the bejeezers out of me tonight! (you know, ALL the details and possibilities as well as the PROBABILITIES) -- but I'm more concerned with spending some time alone with my husband instead of considering everybody else. Selfish, I know. But I can call while he's in surgery tomorrow.
Surgery should start about 10 am Eastern, and I should get an update 90 minutes to two hours into it. What that update will tell me is whether they can proceed with a resection of Al's trachea -- basically slicing out the part with cancer attached, then reconnecting the ends, or in Al-speak, "like splicing the garden hose!" -- which we're hoping for, or removing the majority of the cancer and leaving the trachea intact (oh yeah, it's officially called 'anastomosis', though Donald didn't know the proper spelling).
They'll start with a rigid scope that will allow them to take measurements and gauge the blood flow in the area of his cancer. The freaky thing (to me -- you medical professionals will enjoy this detail!) is that they will make a 'guardian suture' from his chin to his chest. This will keep him from being able to tilt his head extremely back or to either side, to keep tension off his incision after surgery, though he'll be able to have his head upright. They plan to make an incision at about the crease of the base of the neck, but if they have to, will be opening up his breast bone again to gain access. People should sit down to talk to him so he's not looking up, and they're going to have him whisper for several days.
I had understood from Dr. Berquist that this was rather high in the trachea, but evidently it's more centered there. With all the tests, x-rays and scans they've done, they still can't really tell what's going on til they get in and take a look. The tricky stuff here is: (1) Al's bypass surgery 5 years ago, as there could be scar tissue obstructing the working area and/or compromised blood flow. (2) the location of the tumor, as the most important thing is to assure blood flow, and the way the 'vessels' (Donald's word, so I don't have to remember whether they're arteries or veins!!!) run into the trachea, the center section is evidently required for blood flow. (3) the tumor seems rather larger than first expected, and the majority of it appears to be OUTSIDE the trachea (toward the right). Hopefully it's mostly just pressuring the windpipe, and not growing into it or the muscular walls of the esophagus, as it looked to me from what he demonstrated on the x-ray that about 50-60% of the trachea is narrowed. He said they could remove 1/3 to maybe 40% of the trachea and successfully resect it, so hopefully only the smallest bit has actually infiltrated the trachea, and it's not involving the esophagus at all. (4) there are some nerves (he told us the name, but abbreviated it with only an R, but I don't remember) which control the vocal cords, so they need to avoid those or he may lose ability to speak. If that news freaks you out, then you understand how we felt hearing it. I had a few moments of going all jello, but, bless him, Al's attitude is "there's nothing I can do about the situation. The cancer's in there, and we came here to get rid of it." As always, when I'm challenged, he's strong, and vice versa (we have a longstanding agreement that both of us can't be crazy at the same time).
We haven't had any real serious conversations about this cancer, more of a team inspiration speech to each other to be optimistic, and keep doing everything we can to beat 'Walter' (our name for his cancer) out of our lives. But we had those serious conversations 5 years ago with his bypass, so it's just understood. I think he has a great attitude in that we're exactly where we should be for this treatment; he's comfortable with the people treating him, and he knows we're all right here for him.
He'll be in ICU for at least 24 hours (maybe more if they don't have a bed for him on Dr. M's floor), get sips of liquid for a couple of days before transitioning to liquids and solid food at 3-4 days postsurgical. They'll have him on a humidified mask for a couple of days to help keep the incision moist and promote healing. About a week after surgery, he'll have an evaluation with another scope and/or x-rays to ensure it's healing, at which time they'll cut that guardian stitch. When he leaves the hospital (8-10 days) they want us to stay in town 1-2 days to ensure he's OK and comfortable with leaving. His only restrictions will be no heavy lifting or strenuous exercise for about a month after surgery, but then he should be good to go.
If they can't resect, he'll still take out as much tumor as possible, and follow up with chemo and radiation at home. If they DO resect, he'll need some radiation at home anyway to ensure the margins of thec ancer are treated. ='( Al's had to shave off his beard for surgery -- better than letting THEM do it!!! I suggested he call his mom tonight to reassure her, but he didn't think he could do it. Other than that, we've both had pretty strong, positive days, punctuated with a big WHOA! w/Dr.Mathisen. I told Al I was going to have to get a photo of him with a 'naked face' -- I can sure see Doug in his face without the beard!!! And he has reverse 5 o'clock shadow -- his face is tan except where his beard was!!!
I haven't found the internet access at the hospital yet, though I know it exists somewhere, so I'll probably look a little harder once he goes to recovery to send out a full update. Otherwise, the last shuttle to the hotel is at 8:30 pm, and I've already been informed they'll MAKE me go, so I should be back here by 8:45. I've laid in Diet Rite, milk and pop-tarts, so I have all my comfort foods -- and MSN IM will be right there waiting for me, as will the phone.
Just so you know, Al's sense of humor is WELL in tact!!! He harassed all the techs and Dr. M's secretary (she got an order date wrong) through the day. And Amber, he asked me to see if the PA, Donald, was single. He's Yale-educated, good height, great hair, and already looks like he belongs in your family!!! Uncle Al's trying to hook you up!!! =) Hope your shoulder is feeling better, you adrenaline junkie, you!!!
Shelley, is my household in tact??? I'm worried about my furbabies!!! (Though Carol has assured me all is well.)
Everybody, add our dear friend and next door neighbor Ed to your thoughts and prayers. He had a CT scan on Monday, which will be followed with a PET scan next week. Carol & Ed, you know we'll be thinking of you, so keep ME posted on wazzup -- and thanks for keeping an eye out next door!!!
Steph, I haven't really SEEN much of Boston yet -- just the shuttle ride from the airport, then in to the hospital. But we got a kewl view of the 'Chawls' River today, and I was advised to visit the Aquarium and take a 'duck tour', whatever that is. The most interesting point to me so far has been the international mix here!!! I heard at LEAST 8 different languages just wandering the halls today. Thankfully, they have a 'garden dining room' on the lowest floor that is surrounded by rhododendrons in full bloom, lots of grass and a wide variety of trees, which looks up to a large grassy courtyard in the center of the buildings. The air here seems very clean, which we attribute to the sea air. Though it's quite humid, you don't feel it because of the coolness off the water.
Al has assigned me the task of touring Boston for him, and capturing it in photos. As my SB friends know, this must also involve collecting memorabilia, so I have the drawing Dr. M made (which now makes NO sense at all!!!), the tags from our luggage, a few tourist fliers and the menu from the restaurant across the parking lot. I considered scooping up some of Al's beard he left in the sink, but decided that was going a little too far (as I don't have a ziploc to store it in!!!). =)
Kansans, you'll be happy to know one of my Sunroom Sisters is only about 45 minutes away, and we're planning to get together when Al's improving to seek out something interesting -- like maybe an Archiver's, Kim???
Our hotel is very pleasant, the shuttle drivers have been WONDERFUL, and everybody except one receptionist today was incredibly friendly and helpful. We watched this chick, and decided it wasn't just us she was rude to, that's just her manner. Then she came out from behind the desk, and we agreed that either her slacks were too tight, cutting off circulation to her polite cords, or her feet were in constant painfrom her pointy-toe (ala Minola Blanik) shoes, and that's what made her so disagreeable!!! Then again, maybe it just runs that way at Mass Eye & Ear, from the folks we talked to.
I'm sorry I've taken up so much of your time with this novella (if you're even still reading!!!), but wanted to bring you all up to speed, as I know it. I'm not sure how much time I'll make for an update tomorrow, as I expect to collapse once I reach the hotel. But I'll keep you posted as things change, I assure you. Al's strewn across the bed SIDEWAYS, snoring, so I may take up residence in the wing chair, just so I don't disturb him. Neither of us has slept well the past couple of nights (anxiety can do that to you!), so I want him to be rested. I can nap in the Gray Surgical Family Waiting Room while I wait tomorrow -- one of those handy details about being a Potter, I guess; I can sleep ANYWHERE!!!
Thanks as always for your love and support. It's so good to know you're all out there lifting us up in your own way, and only a phone call away whenever needed.
xoxoxo
Sharon
Al particularly had a long day today -- nearly 12 hours at the hospital running between 6 appointments in six separate buildings --intake and lab, history with Dr. Mathiesen's PA (he could be a Mounday, but more about him later!), followed by a tracheal x-ray, chest x-ray, CT scan (that took TWO hours!), lunch at 4:45, followed by an appointment/first meeting with Dr. Mathisen.
I've been telling myself I should call people to soothe my nerves -- the doctor scared the bejeezers out of me tonight! (you know, ALL the details and possibilities as well as the PROBABILITIES) -- but I'm more concerned with spending some time alone with my husband instead of considering everybody else. Selfish, I know. But I can call while he's in surgery tomorrow.
Surgery should start about 10 am Eastern, and I should get an update 90 minutes to two hours into it. What that update will tell me is whether they can proceed with a resection of Al's trachea -- basically slicing out the part with cancer attached, then reconnecting the ends, or in Al-speak, "like splicing the garden hose!" -- which we're hoping for, or removing the majority of the cancer and leaving the trachea intact (oh yeah, it's officially called 'anastomosis', though Donald didn't know the proper spelling).
They'll start with a rigid scope that will allow them to take measurements and gauge the blood flow in the area of his cancer. The freaky thing (to me -- you medical professionals will enjoy this detail!) is that they will make a 'guardian suture' from his chin to his chest. This will keep him from being able to tilt his head extremely back or to either side, to keep tension off his incision after surgery, though he'll be able to have his head upright. They plan to make an incision at about the crease of the base of the neck, but if they have to, will be opening up his breast bone again to gain access. People should sit down to talk to him so he's not looking up, and they're going to have him whisper for several days.
I had understood from Dr. Berquist that this was rather high in the trachea, but evidently it's more centered there. With all the tests, x-rays and scans they've done, they still can't really tell what's going on til they get in and take a look. The tricky stuff here is: (1) Al's bypass surgery 5 years ago, as there could be scar tissue obstructing the working area and/or compromised blood flow. (2) the location of the tumor, as the most important thing is to assure blood flow, and the way the 'vessels' (Donald's word, so I don't have to remember whether they're arteries or veins!!!) run into the trachea, the center section is evidently required for blood flow. (3) the tumor seems rather larger than first expected, and the majority of it appears to be OUTSIDE the trachea (toward the right). Hopefully it's mostly just pressuring the windpipe, and not growing into it or the muscular walls of the esophagus, as it looked to me from what he demonstrated on the x-ray that about 50-60% of the trachea is narrowed. He said they could remove 1/3 to maybe 40% of the trachea and successfully resect it, so hopefully only the smallest bit has actually infiltrated the trachea, and it's not involving the esophagus at all. (4) there are some nerves (he told us the name, but abbreviated it with only an R, but I don't remember) which control the vocal cords, so they need to avoid those or he may lose ability to speak. If that news freaks you out, then you understand how we felt hearing it. I had a few moments of going all jello, but, bless him, Al's attitude is "there's nothing I can do about the situation. The cancer's in there, and we came here to get rid of it." As always, when I'm challenged, he's strong, and vice versa (we have a longstanding agreement that both of us can't be crazy at the same time).
We haven't had any real serious conversations about this cancer, more of a team inspiration speech to each other to be optimistic, and keep doing everything we can to beat 'Walter' (our name for his cancer) out of our lives. But we had those serious conversations 5 years ago with his bypass, so it's just understood. I think he has a great attitude in that we're exactly where we should be for this treatment; he's comfortable with the people treating him, and he knows we're all right here for him.
He'll be in ICU for at least 24 hours (maybe more if they don't have a bed for him on Dr. M's floor), get sips of liquid for a couple of days before transitioning to liquids and solid food at 3-4 days postsurgical. They'll have him on a humidified mask for a couple of days to help keep the incision moist and promote healing. About a week after surgery, he'll have an evaluation with another scope and/or x-rays to ensure it's healing, at which time they'll cut that guardian stitch. When he leaves the hospital (8-10 days) they want us to stay in town 1-2 days to ensure he's OK and comfortable with leaving. His only restrictions will be no heavy lifting or strenuous exercise for about a month after surgery, but then he should be good to go.
If they can't resect, he'll still take out as much tumor as possible, and follow up with chemo and radiation at home. If they DO resect, he'll need some radiation at home anyway to ensure the margins of thec ancer are treated. ='( Al's had to shave off his beard for surgery -- better than letting THEM do it!!! I suggested he call his mom tonight to reassure her, but he didn't think he could do it. Other than that, we've both had pretty strong, positive days, punctuated with a big WHOA! w/Dr.Mathisen. I told Al I was going to have to get a photo of him with a 'naked face' -- I can sure see Doug in his face without the beard!!! And he has reverse 5 o'clock shadow -- his face is tan except where his beard was!!!
I haven't found the internet access at the hospital yet, though I know it exists somewhere, so I'll probably look a little harder once he goes to recovery to send out a full update. Otherwise, the last shuttle to the hotel is at 8:30 pm, and I've already been informed they'll MAKE me go, so I should be back here by 8:45. I've laid in Diet Rite, milk and pop-tarts, so I have all my comfort foods -- and MSN IM will be right there waiting for me, as will the phone.
Just so you know, Al's sense of humor is WELL in tact!!! He harassed all the techs and Dr. M's secretary (she got an order date wrong) through the day. And Amber, he asked me to see if the PA, Donald, was single. He's Yale-educated, good height, great hair, and already looks like he belongs in your family!!! Uncle Al's trying to hook you up!!! =) Hope your shoulder is feeling better, you adrenaline junkie, you!!!
Shelley, is my household in tact??? I'm worried about my furbabies!!! (Though Carol has assured me all is well.)
Everybody, add our dear friend and next door neighbor Ed to your thoughts and prayers. He had a CT scan on Monday, which will be followed with a PET scan next week. Carol & Ed, you know we'll be thinking of you, so keep ME posted on wazzup -- and thanks for keeping an eye out next door!!!
Steph, I haven't really SEEN much of Boston yet -- just the shuttle ride from the airport, then in to the hospital. But we got a kewl view of the 'Chawls' River today, and I was advised to visit the Aquarium and take a 'duck tour', whatever that is. The most interesting point to me so far has been the international mix here!!! I heard at LEAST 8 different languages just wandering the halls today. Thankfully, they have a 'garden dining room' on the lowest floor that is surrounded by rhododendrons in full bloom, lots of grass and a wide variety of trees, which looks up to a large grassy courtyard in the center of the buildings. The air here seems very clean, which we attribute to the sea air. Though it's quite humid, you don't feel it because of the coolness off the water.
Al has assigned me the task of touring Boston for him, and capturing it in photos. As my SB friends know, this must also involve collecting memorabilia, so I have the drawing Dr. M made (which now makes NO sense at all!!!), the tags from our luggage, a few tourist fliers and the menu from the restaurant across the parking lot. I considered scooping up some of Al's beard he left in the sink, but decided that was going a little too far (as I don't have a ziploc to store it in!!!). =)
Kansans, you'll be happy to know one of my Sunroom Sisters is only about 45 minutes away, and we're planning to get together when Al's improving to seek out something interesting -- like maybe an Archiver's, Kim???
Our hotel is very pleasant, the shuttle drivers have been WONDERFUL, and everybody except one receptionist today was incredibly friendly and helpful. We watched this chick, and decided it wasn't just us she was rude to, that's just her manner. Then she came out from behind the desk, and we agreed that either her slacks were too tight, cutting off circulation to her polite cords, or her feet were in constant painfrom her pointy-toe (ala Minola Blanik) shoes, and that's what made her so disagreeable!!! Then again, maybe it just runs that way at Mass Eye & Ear, from the folks we talked to.
I'm sorry I've taken up so much of your time with this novella (if you're even still reading!!!), but wanted to bring you all up to speed, as I know it. I'm not sure how much time I'll make for an update tomorrow, as I expect to collapse once I reach the hotel. But I'll keep you posted as things change, I assure you. Al's strewn across the bed SIDEWAYS, snoring, so I may take up residence in the wing chair, just so I don't disturb him. Neither of us has slept well the past couple of nights (anxiety can do that to you!), so I want him to be rested. I can nap in the Gray Surgical Family Waiting Room while I wait tomorrow -- one of those handy details about being a Potter, I guess; I can sleep ANYWHERE!!!
Thanks as always for your love and support. It's so good to know you're all out there lifting us up in your own way, and only a phone call away whenever needed.
xoxoxo
Sharon
Update on Al #7
Hi all!!!
Just wanted to let you know we've arrived in Boston safely. The flights weren't bad at all, and the hotel shuttle picked us up without a hitch. There's a nice restaurant/pub just across the parking lot from our hotel, so we had a nice meal and fell into bed last night. I think we both even got some sleep!!!
Since I'm roaming (at 99 cents/minute), I won't be answering my cell phone unless it's someone from MGH. You can leave a voice mail, and I'll call you back, or get me at the hotel after 8:00 pm Central. The number here is 617-625-5300; we're in room 201.
The address of the motel is:
MGH at the Inn
c/o LaQuinta/Tage Inn
23 Cummings Street, Room #201
Somerville, MA 02145
Al has a full day today while we tour MGH to get pre-admissing testing, intake and some x-rays. Somewhere we're supposed to meet with Dr. Mathisen -- for some reason they'd scheduled us to see him YESTERDAY afternoon.
Cleo, thanks for everything. Sorry if I was wicked on the phone last night; Al had finally gotten to sleep when the phone rang -- and some idiot had turned the ringer as loud as it goes. Can you say FIRE ALARM???
Rich, my buddy, my pal, you have saved my life by loaning me this laptop!!!
Karen, thanks again for being so considerate. I picked up the new book from Rebecca Wells; the prequel of the Ya-Yas, 'Ya-yas in Bloom'. Brought a smile to my face yesterday when nothing else would -- so I'm saving it for tomorow's surgery.
Shelley, how are my furbabies???
Marcia, finish your packing!!! Chat w/you later!
Carrie, what's the news on your house?
Josh, thanks for the voicemail; send me your phone number so I can return the call. I appreciate the sentiment, and may save that one forever!!!
Lynn, thanks for the gift. As soon as I can find a newsstand, I'm going to pick up that issue you suggested for Al to enjoy at thehospital!!!
Angie -- Joyce & Uchenna!!! WOO-HOO!!! I was going to stop watching Amazing Race if Rob & Amber won.
Mary, my only request would be empanadas. Al will eat anything -- and is looking forward to your treats, "even if I have to drink them through a straw". I'll send you a separate note later with Shelley's contact info.
Everybody else, thanks for your love and support. I can feel it in my heart, even halfway across the country.
xoxoxo
Sharon
Sunday, May 08, 2005
Update on Al #6
Good evening, all!!!
Didn't realize I hadn't shared our details with all of you. Sorry about that. Hope you've all had a wonderful Mother's Day!!!
Al's last day at work was Friday until the docs release him. I'm working a regular day tomorrow, leading Shelley (my niece) through my to-do list around the house, then we're heading down to Cleo's (SIL) to spend the night. She's graciously agreed to take us to the airport EARLY Tuesday morning, and babysit our van while we're gone.
I was able to get a room at the hospital-operated motel, and will send out contact information after we check in. We'll see Dr. Mathisen early on Wednesday, so that he can order any additional tests or x-rays he needs, and he'll explain the procedure and details then. The surgery will take about 5 hours, then he'll come up to ICU for the night. Then he'll be transferred to 'Dr. Mathisen's floor' in the Ellison building, 19th floor of Massachusetts General. Again, I'll provide details as soon as I have them. He'll be in the hospital 8-10 days, then they want us to stay in town 1-2 days when he's released. They overnighted a packet of instructions, but we didn't get them yesterday, so they should show up tomorrow.
My good buddy Rich has loaned me a kick butt laptop to take along, and the hotel has high speed internet access, so my sanity is saved, as I'll be able to stay in touch as usual. And I'll be baking PLENTY of chocolate chip cookies when we return in a lame attempt to pay him back.
We had lots of company yesterday, and Al had a really good day --breakfast and a nice visit with his sister & BIL from Colorado, followed by lunch and a little running around with Mom & John. Al got some things done around the house he was worried about getting done before we leave.
Today was NOT such a great day for Al, so we stayed very close to home. He got his last project finished (though it took him all day!), and I got things organized in the garden, so I can spend two weeks in Boston without worrying. TOO much! Gonna have to get Shelley to take pics of things as they bloom while we're gone. Looks like we're going to miss this year's Chasing Rainbows Irises!!! Fortunately, I have that great photo from last year. =)
Thanks for keeping us BOTH close to your hearts. I'm looking at Boston as an adventure, and I'm happy we'll have an evening or two together there before surgery. Al insisted I bring the camera, and suggested I search for activities I can enjoy while we're there. (As if I'm gonna be very far from him!!!) So if you're bored, check out http://www.bostonusa.com/, and send me suggestions!!! =)
Gonna sign off and hit the hay.
xoxoxo
Sharon
Thursday, May 05, 2005
Update on Al #5
Well, here we go!!! We've been whining around here because nobody's been calling. Dr. Berquist was frustrated because he hadn't heard back from Dr. Mathisen, and was even calling other cancer centers to see what our options were.
Then, lo and behold, Dr. Mathisen's office wants me to call them. He's available to do Al's surgery on Thursday, May 12. They want us in Boston at least 24 hours in advance, so we can meet with him, and he can order any tests or x-rays he feels are needed before the surgery. The surgery will take about 5 hours, he'll be in ICU probably overnight, and spend 8-10 days in the hospital total.
Diane in Dr. Mathisen's office made me feel instantly at home, and tells me we'll love him. "Don't be afraid, though, because he's a BIG, burly guy". She says he's meticulous about details and pretty much gets what he wants at Mass General -- like his own floor for patients, the Ellison Building, 19th floor. I'm working on a list of questions to ask when we talk tomorrow; I was a little freaked out when we talked this afternoon. Starting with "Will I have access to a computer while there?"
The hospital runs a 'hotel' for families of patients, which I hope I'll be able to stay in. It's about 15 minutes from the hospital, but they run a shuttle several times a day between there and the hospital; they're only staffed from 9 am to 3:30 pm eastern time, so I didn't get to talk about reservations or rates. I was a little shell shocked about the other lodging option Dr. Mathisen's office gave me -- they START at $189/night!!! I'm thinking pitching a tent sounds like a GOOD option, and a motor home sounds like heaven!!! =)
I have the Corporate Angel Network working on a flight for us, but it doesn't look promising; they usually need at least 2 weeks' notice. But I'll hear from them tomorrow. Fortunately, Wichita has gotten more competitive about their flight rates, and my friend at the travel agency came up with more reasonable flights than I had expected.
We've never gone away for more than 6-7 days at once, but I'm thankful we have great neighbors, wonderful friends, and a local niece who owes us a favor or two to look after things here at home. The dust can keep til we get back!!!
So I'm off to figure out necessities to pack, how to keep myself busy on the cheap while we're in Boston, whether to take my camera (and lug it EVERYWHERE while I'm there), and a million other things I haven't thought of yet.
For each of you from Lowe's, thanks very much -- for your sentiments and your gifts; they will help keep us going in the next couple of weeks. Guess I'd better take my camera after all, after reading your notes!!!
Tami, I'm going to go ahead and send you Tess's CJ on Monday. I'll keep Stormy's here, as it's not due to mail til June 15.
Thanks to each of you for the good vibes, prayers and support. Keep those positive thoughts going as we set upon this journey.
xoxoxo
Sharon
Then, lo and behold, Dr. Mathisen's office wants me to call them. He's available to do Al's surgery on Thursday, May 12. They want us in Boston at least 24 hours in advance, so we can meet with him, and he can order any tests or x-rays he feels are needed before the surgery. The surgery will take about 5 hours, he'll be in ICU probably overnight, and spend 8-10 days in the hospital total.
Diane in Dr. Mathisen's office made me feel instantly at home, and tells me we'll love him. "Don't be afraid, though, because he's a BIG, burly guy". She says he's meticulous about details and pretty much gets what he wants at Mass General -- like his own floor for patients, the Ellison Building, 19th floor. I'm working on a list of questions to ask when we talk tomorrow; I was a little freaked out when we talked this afternoon. Starting with "Will I have access to a computer while there?"
The hospital runs a 'hotel' for families of patients, which I hope I'll be able to stay in. It's about 15 minutes from the hospital, but they run a shuttle several times a day between there and the hospital; they're only staffed from 9 am to 3:30 pm eastern time, so I didn't get to talk about reservations or rates. I was a little shell shocked about the other lodging option Dr. Mathisen's office gave me -- they START at $189/night!!! I'm thinking pitching a tent sounds like a GOOD option, and a motor home sounds like heaven!!! =)
I have the Corporate Angel Network working on a flight for us, but it doesn't look promising; they usually need at least 2 weeks' notice. But I'll hear from them tomorrow. Fortunately, Wichita has gotten more competitive about their flight rates, and my friend at the travel agency came up with more reasonable flights than I had expected.
We've never gone away for more than 6-7 days at once, but I'm thankful we have great neighbors, wonderful friends, and a local niece who owes us a favor or two to look after things here at home. The dust can keep til we get back!!!
So I'm off to figure out necessities to pack, how to keep myself busy on the cheap while we're in Boston, whether to take my camera (and lug it EVERYWHERE while I'm there), and a million other things I haven't thought of yet.
For each of you from Lowe's, thanks very much -- for your sentiments and your gifts; they will help keep us going in the next couple of weeks. Guess I'd better take my camera after all, after reading your notes!!!
Tami, I'm going to go ahead and send you Tess's CJ on Monday. I'll keep Stormy's here, as it's not due to mail til June 15.
Thanks to each of you for the good vibes, prayers and support. Keep those positive thoughts going as we set upon this journey.
xoxoxo
Sharon
Monday, May 02, 2005
Update on Al #4
Short but sweet.
Had a call from Dr. Berquist's office this evening. The PET scan shows that Al's cancer has NOT spread -- it is localized to his trachea only. This is the VERY best news we could get from this test!!! I can breathe again!
Dr. Berquist sent the results via fax to Dr. Mathisen (in Boston), and we are awaiting further instructions/guidance/details from him.
We had a rather 'normal' weekend. Al was off this past weekend, so I put him to work in the garden, helping me divide the Maiden Grass. (Rich, stop by and pick up a clump or two -- SOON!) He finished up the bathroom -- which has the seal of approval of everybody who's seen it (Pam & Vic, thanks for the suggestions). And Al got started on his veggie garden -- none too soon, but I convinced him he should still have one, anyway.
We've had nice visits with our 'in-state' sisters the past few days, and it's really helped us relax a bit. The support makes such a big difference in our outlook. And this GOOD news doesn't hurt!!! So much for short and sweet!
Thanks everybody, for your e-mails, notes, cards, calls, thoughts and prayers. Keep 'em coming; they really DO make a difference in our lives.
xoxoxo
Sharon
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