OK so Al had another head and neck CT scan with contrast yesterday. We saw Dr. Beck (oncologist) this morning. The report from the CT scan supports that Al's throat and trachea look clear, but the mass remains, which is still 'displacing' his esophagus. This explains why Al sometimes has trouble swallowing on the right side of his throat.
Better news is that the mass was 2.3 cm x 2 cm on the November report (which I don't recall hearing); it is now measuring at 1.3 cm x 1.3 cm, so it's decreased significantly.
That 'nodule' that showed up in last month's scan has decreased, and yes, Vicki, he said that could just be some inflammation of a lymph node or something altogether unrelated.
This report was written by a different radiologist than has done the past two, and me mentions "soft tissue asymmetry superior at the level of the hyoid bone". So that gave Al something new to worry about. Dr. Beck feels the radiologist is just covering every base, as the report mentioned this could not be appreciated on the prior scans (due to the nature of the scans). So that's going to be something to keep watching.
We spoke with Dr. Beck at length today, and explained how we feel we're just treading water at this point. He confirmed my optimism, that as long as the mass continues to reduce and Al doesn't develop new symptions, all is well. We talked about how sore Al's throat has been, and Dr. Beck instructed him to get back on the Prevacid (for acid reflux) to see if that would help. His wife suggested this to Al two weeks ago, but since I don't have a medical degree, that didn't count. You can bet I gave him a big 'told you so' in the office today!!! His voice is still a bit in and out, but it's definitely improved in the past month.
Al's been working half days back at Lowe's, which has really boosted his spirits. He's also keeping busy on various projects involving wood and the garage, which has also been very good for him. I'm getting a few hours on the weekend to myself, which has boosted MY spirits. Things are getting better.
He's scheduled to go back for another CT scan the first week of January, so unless there's a big change beforehand, I'll send an update then. This cold weather has been giving Al a run for his money, but I've converted him to lounging fully dressed (t-short and sweat pants instead of just gym shorts in the dead of winter), and he's learned to appreciate the joys of the down throws. My next goal is getting him into SLIPPERS!!! Could a robe be next on the horizon???
Thanks ever so much for your support and concern as we work our way through this challenge. Your notes, calls, cards and various greetings are SO appreciated; I never realized how much of a difference such things could make in one person's life!!!
xoxoxo
Sharon
Tuesday, December 06, 2005
Saturday, November 05, 2005
Update on Al #37
Hiya everybody!
Just a quick note (as if!) on our visit to the oncologist today. The not-so-great news is that on this CT scan, they saw a 'nodule' on Al's left lung. I thought Dr. Beck said the size of it was a sonometer, but this evening I did a little research on the metric system and didn't find such a measurement. At any rate, he said it was minuscule, and not to be terribly concerned, because the way a CT works is to take the x-rays in 'slices' which are spaced 'x' far apart; this nodule may well have fallen between the slices in the previous CT scans.
As for the tumor, the CT scan reveals that the mass is 'appreciably smaller' than previously measured. I'm taking this as good news. He said it's possible the cancer is gone, but there could be a mass of benign cells remaining, and reminded us the radiation is still coursing through Al's body in case there IS still cancer there. Dr. Beck also asked whether Dr. Berquist took any biopsies on the bronchoscopy, and was surprised to learn he hadn't. He's encouraged the mass is getting smaller, and expects that to continue.
Al complained about his sore throat and the cough, and Dr. Beck suggested some gargling, and continuing with what he's been doing to resolve it. Sometimes a breathing treatment helps, sometimes cough syrup helps, other times it doesn't.
So, the plan of attack is same as before, or in Al's words, "Hurry up and WAIT!". He's scheduled for another CT scan the first week of December, and we'll be watching for changes in the mass and/or in the nodule. Dr. Beck said he won't even consider another PET scan for another 3-4 months, and then only if the mass or the nodule are growing.
The best news is that he released Al to go back to work half time -- so he's going to finish up some of his 'projects' and start 10-2 on Saturday.
OK, maybe that's the second best news. The best news is that I'll have FOUR uninterrupted hours at home alone on Saturday, and again on Sunday!!! This is the first 'for sure' time I've had at home to myself in MONTHS. Geez, I sound like such a witch, but I know those of you who REALLY know me will understand!!! (Al does!)
So, please continue to keep us in your hearts and prayers. We'll get through this yet!!!
xoxoxo
Sharon
Just a quick note (as if!) on our visit to the oncologist today. The not-so-great news is that on this CT scan, they saw a 'nodule' on Al's left lung. I thought Dr. Beck said the size of it was a sonometer, but this evening I did a little research on the metric system and didn't find such a measurement. At any rate, he said it was minuscule, and not to be terribly concerned, because the way a CT works is to take the x-rays in 'slices' which are spaced 'x' far apart; this nodule may well have fallen between the slices in the previous CT scans.
As for the tumor, the CT scan reveals that the mass is 'appreciably smaller' than previously measured. I'm taking this as good news. He said it's possible the cancer is gone, but there could be a mass of benign cells remaining, and reminded us the radiation is still coursing through Al's body in case there IS still cancer there. Dr. Beck also asked whether Dr. Berquist took any biopsies on the bronchoscopy, and was surprised to learn he hadn't. He's encouraged the mass is getting smaller, and expects that to continue.
Al complained about his sore throat and the cough, and Dr. Beck suggested some gargling, and continuing with what he's been doing to resolve it. Sometimes a breathing treatment helps, sometimes cough syrup helps, other times it doesn't.
So, the plan of attack is same as before, or in Al's words, "Hurry up and WAIT!". He's scheduled for another CT scan the first week of December, and we'll be watching for changes in the mass and/or in the nodule. Dr. Beck said he won't even consider another PET scan for another 3-4 months, and then only if the mass or the nodule are growing.
The best news is that he released Al to go back to work half time -- so he's going to finish up some of his 'projects' and start 10-2 on Saturday.
OK, maybe that's the second best news. The best news is that I'll have FOUR uninterrupted hours at home alone on Saturday, and again on Sunday!!! This is the first 'for sure' time I've had at home to myself in MONTHS. Geez, I sound like such a witch, but I know those of you who REALLY know me will understand!!! (Al does!)
So, please continue to keep us in your hearts and prayers. We'll get through this yet!!!
xoxoxo
Sharon
Wednesday, November 02, 2005
Update on Al #36
Hi, everybody!!!
Sorry to be so late in the day getting this update out. After we traipsed around town (I knew Al wouldn't go straight home!), we both kinda passed out on the couch.
GOOD NEWS -- Dr. Berquist says he can't see any sign of tumor in Al's trachea!!! That's the best possible news we could have heard today. They also did a CT this morning, but Dr. Berquist hadn't seen it, so we'll wait until Monday when we see Dr. Beck to see what the CT indicates.
Dr. Berquist says Al's cough is probably just his regular cough made worse by the "hell and back" Al's been through this summer. He also told me his vocal cords look really good, although his 'false' vocal cords below that are still rather red and inflamed, as is his throat. This is due to the radiation and part of the package, and he feels it will clear up as time passes and he heals, expecting his voice will get back to normal as that happens (it still waxes and wanes a bit).
So, we dropped by Randy's to check in, then went to Lowe's. Anticipating that Dr. Beck will release him to work at least full time, Al spoke with the HR lady, and they're willing to work around whatever kind of schedule he can manage. They'll keep him on 'full time' status with few hours to keep his benefits at that status instead of dropping him down to 'part time' status and benefits, since he hopes to build up to full time again soon. Then we dropped by Dillons for a loaf of bread and came straight hom. Passed out on the couch, and finally woke up and got busy around 4:30!!!
So, please continue to keep us in your hearts and prayers. I'll update you again once we see Dr. Beck on Monday.
xoxoxo
Sharon
Sorry to be so late in the day getting this update out. After we traipsed around town (I knew Al wouldn't go straight home!), we both kinda passed out on the couch.
GOOD NEWS -- Dr. Berquist says he can't see any sign of tumor in Al's trachea!!! That's the best possible news we could have heard today. They also did a CT this morning, but Dr. Berquist hadn't seen it, so we'll wait until Monday when we see Dr. Beck to see what the CT indicates.
Dr. Berquist says Al's cough is probably just his regular cough made worse by the "hell and back" Al's been through this summer. He also told me his vocal cords look really good, although his 'false' vocal cords below that are still rather red and inflamed, as is his throat. This is due to the radiation and part of the package, and he feels it will clear up as time passes and he heals, expecting his voice will get back to normal as that happens (it still waxes and wanes a bit).
So, we dropped by Randy's to check in, then went to Lowe's. Anticipating that Dr. Beck will release him to work at least full time, Al spoke with the HR lady, and they're willing to work around whatever kind of schedule he can manage. They'll keep him on 'full time' status with few hours to keep his benefits at that status instead of dropping him down to 'part time' status and benefits, since he hopes to build up to full time again soon. Then we dropped by Dillons for a loaf of bread and came straight hom. Passed out on the couch, and finally woke up and got busy around 4:30!!!
So, please continue to keep us in your hearts and prayers. I'll update you again once we see Dr. Beck on Monday.
xoxoxo
Sharon
Tuesday, October 25, 2005
Update on Al #35
Greetings, all!!! I've had several inquiries about Al recently, so figured I should send out a new update. Forgot to let you 'newbies' (who weren't on the list for Al's bypass in 2000) that "no news is good news" or at least, as Mark says "no news is no news!!!"
Al is continuing to improve. Best update news is that most days are good days, and the bad days aren't as bad. Next best (in my opinion) is that the hair under Al's chin is growing back in, and his beard looks ALMOST normal (just a little longer, then a good trim from looking normal). In fact, he went out north and helped a pal close his pool on Sunday; fixed Len's carpet shampooer over the weekend, and shampooed most of the house on Monday. Then basically collapsed into bed last night and didn't get up til noon today!!! This encourages me, as he's taking on some bigger projects than reloading the dishwasher and laundry. He's a little concerned yet about a building project on the horizon, but I reminded him how well the porch project went at Lucille's house a few weeks ago. 'Course, he was well supervised with a talented architect on the project.
And any of us who knows him would not be surprised to know he overdoes it a bit, then crashes. Some day, SOME DAY, he'll learn to pace himself. =)
Of concern is his ongoing, periodic, horrendous (IMHO) cough. Need to thank Mom, Rita and Shelley for not running out of the restaurant recently when he had a coughing jag in the middle of lunch. I've gotten pretty used to them (except in the middle of the night!), but they can be really disconcerting to strangers. We did get the other drug for his nebulizer (instead of Albuterol, which messed with his heartbeat), and it helps him overall, but doesn't seem to stop the cough. He's actually been using the prescription cough syrup, with mixed results. I fear this is just one of those things we'll have to wait out, and hopefully it will pass soon. Doesn't seem to be much we can do about it anyway, so will keep trying suggestions, and hopefully it'll go away soon.
His voice still seems iffy to me, but people who haven't seen him in a few weeks are WAY impressed with how good he sounds. It's FAR more consistent than when I sent my last update. Better in person than on the phone, I'd have to say. It just takes more effort to speak than it used to.
Next up will be a CT scan and bronchoscopy on November 2. I should know SOMETHING that morning, so will expect to send a new update later in the day. We follow-up with Dr. Beck (oncologist) on Monday, November 7. Hopefully all the news will be good, with the tumor smaller or GONE, and he can start working at least part time again. He's going to go stir crazy if he stays home alone much longer, though I hate to give up my homemaker husband.
Jeannie, Al shared your e-mail with me. Please know you can call on us at any time -- even if it's just for a supportive hug. I don't know which hospital you're at, or what your mom's name or room number is, so drop me a note and I'll check in with you. I understand where you are right now, as my father passed a number of years ago following a massive stroke. Nothing can make it easier, but know we're here for you, and only a phone call away. (Remember, I work just across the street from SRHCl!) And I highly recommend e-mail updates; they're much less exhausting than 15 calls a day!!! =)
Connie and JR, your surprise visit recently was SO much fun!!! Feel free to drop in on us any time!!!
I'm going to get on to other projects now, but not before I thank you all for your ongoing thoughts and prayers. Please continue to keep us close to your hearts, as we still have this fight on our hands.
xoxoxo
Sharon
P.S. Oh yeah, I know some of you will ask. I'm doing fine. I have my emotional, teary moments (days), but overall, just keep on going to work, plugging away and juggling the finances. Having a creative outlet really helps, and working in the garden recently has been very calming. Plenty of hugs from the big guy don't hurt, either. Now if it'll just warm up for a couple more weekends, so I can put the garden to bed!!!
Al is continuing to improve. Best update news is that most days are good days, and the bad days aren't as bad. Next best (in my opinion) is that the hair under Al's chin is growing back in, and his beard looks ALMOST normal (just a little longer, then a good trim from looking normal). In fact, he went out north and helped a pal close his pool on Sunday; fixed Len's carpet shampooer over the weekend, and shampooed most of the house on Monday. Then basically collapsed into bed last night and didn't get up til noon today!!! This encourages me, as he's taking on some bigger projects than reloading the dishwasher and laundry. He's a little concerned yet about a building project on the horizon, but I reminded him how well the porch project went at Lucille's house a few weeks ago. 'Course, he was well supervised with a talented architect on the project.
And any of us who knows him would not be surprised to know he overdoes it a bit, then crashes. Some day, SOME DAY, he'll learn to pace himself. =)
Of concern is his ongoing, periodic, horrendous (IMHO) cough. Need to thank Mom, Rita and Shelley for not running out of the restaurant recently when he had a coughing jag in the middle of lunch. I've gotten pretty used to them (except in the middle of the night!), but they can be really disconcerting to strangers. We did get the other drug for his nebulizer (instead of Albuterol, which messed with his heartbeat), and it helps him overall, but doesn't seem to stop the cough. He's actually been using the prescription cough syrup, with mixed results. I fear this is just one of those things we'll have to wait out, and hopefully it will pass soon. Doesn't seem to be much we can do about it anyway, so will keep trying suggestions, and hopefully it'll go away soon.
His voice still seems iffy to me, but people who haven't seen him in a few weeks are WAY impressed with how good he sounds. It's FAR more consistent than when I sent my last update. Better in person than on the phone, I'd have to say. It just takes more effort to speak than it used to.
Next up will be a CT scan and bronchoscopy on November 2. I should know SOMETHING that morning, so will expect to send a new update later in the day. We follow-up with Dr. Beck (oncologist) on Monday, November 7. Hopefully all the news will be good, with the tumor smaller or GONE, and he can start working at least part time again. He's going to go stir crazy if he stays home alone much longer, though I hate to give up my homemaker husband.
Jeannie, Al shared your e-mail with me. Please know you can call on us at any time -- even if it's just for a supportive hug. I don't know which hospital you're at, or what your mom's name or room number is, so drop me a note and I'll check in with you. I understand where you are right now, as my father passed a number of years ago following a massive stroke. Nothing can make it easier, but know we're here for you, and only a phone call away. (Remember, I work just across the street from SRHCl!) And I highly recommend e-mail updates; they're much less exhausting than 15 calls a day!!! =)
Connie and JR, your surprise visit recently was SO much fun!!! Feel free to drop in on us any time!!!
I'm going to get on to other projects now, but not before I thank you all for your ongoing thoughts and prayers. Please continue to keep us close to your hearts, as we still have this fight on our hands.
xoxoxo
Sharon
P.S. Oh yeah, I know some of you will ask. I'm doing fine. I have my emotional, teary moments (days), but overall, just keep on going to work, plugging away and juggling the finances. Having a creative outlet really helps, and working in the garden recently has been very calming. Plenty of hugs from the big guy don't hurt, either. Now if it'll just warm up for a couple more weekends, so I can put the garden to bed!!!
Sunday, September 25, 2005
Update on Al #34
Hi everybody!!! Figured it's been a while since the last update, so I'd drop you a line.
The best news is that Al has returned to sleeping in our waterbed, and the hospital bed is HISTORY. I'd forgotten what a luxury it is to just reach out your hand in the middle of the night to touch his cheek or stroke his back. 'Course, it's taken a little adjustment on my part -- sleeping vertically again instead of horizontally across the bed -- and the cats were SERIOUSLY confused for a few nights.
Al's throat is still sore, but his voice is so much better. I can always tell when he's had too much visiting, as the voice begins to fade. But on a daily basis, it seems to get stronger, and he sounds more like Al than that guy from Swing Blade!!! (BTW, he doesn't appreciate that comparison!) LOL
He's felt pretty decent, enough to suggest we visit the State Fair in Hutchinson. (Yes, Connie, OUR State Fair!!!) We got a lovely day out of the deal and spent the morning traipsing all over the fairgrounds. We had lunch at my favorite burger joint, and I got to visit a real, live SB store. (And came out empty handed!!!)
The Social Security Disability application was approved, to be effective November 1, but he doesn't receive a check until approximatley December 21. So it may be a long, lean Fall. Naturally, the van died on me last night 'clear' across town (took Al 15 minutes to get there!). Good news is it was easily repaired, and for less than $100. Another reminder to be thankful for good friends who look out for us -- Randy fetched the van with his wrecker, hauled it down to the shop, and let it stay there while the alternator was rebuilt and replaced. Rambo, in case Al didn't say it properly, you'll be at the top of my next cookie list, promise!!!
We've even gone out bicycling on the tandem in this beautiful weather we've been having. Al needs to wear a mask, though, as he always 'drives' the bike, and when the air is cool, it pretty much takes his breath away.
We both felt a little better about his condition after we ran into Nurse Betty from Dr. Beck's office in a local store. She was happy to see us (we were last there on her day off), as she hated missing us, and was excited by how well Al is progressing. Guess it's all in your perspective!!! I'd mentioned to Al that we had been used to seeing Dr. Beck early in the week and early in the day, and his last appointment was probably one of his last of the week late in the day. So I'm going to double check the time we're scheduled to see him in November, and make sure it's early!!!
We had SO much company this weekend, it was like grand central station here. And I have to admit, I loved it!!! We finally 'allowed' Doug and Pam to come visit for the weekend; they brought some DVDs and Pam brought her SB supplies, so we had a good time. It was fun bopping around town in their new little Hyundai Santa Fe. Yes, Jessica, I've brought another scrapper into the fold. And we learned you can substitute lemon pudding for butterscotch in bubble bread; in fact I liked it better that way!!!
Long story short, both my sisters visited as well, and Vicki brought her whole family together for a meal in Salina (thanks for the extra drive, Josh, we were both happy to see you). Poor Desi (Daisy?) got a full helping of Potter and then some, and didn't run into the woods screaming. And I swear both Nathan and Josh get taller every time I see them!!! (or am I getting shorter???)
Al's back to mowing our lawn, and has dug up some of those weed trees that have SO been annoying me in the garden. He's got some serious cucumber vines going on out back, and is hosting a garage sale (YUCK!) this weekend. (I'll be hiding out in the den or back yard!!!)
Anywho, please continue to keep us in your hearts and your thoughts. It's been a long, hard summer, so we're embracing this 'honeymoon' of fall, and hoping for nothing but improvements this winter.
xoxoxo
Sharon
The best news is that Al has returned to sleeping in our waterbed, and the hospital bed is HISTORY. I'd forgotten what a luxury it is to just reach out your hand in the middle of the night to touch his cheek or stroke his back. 'Course, it's taken a little adjustment on my part -- sleeping vertically again instead of horizontally across the bed -- and the cats were SERIOUSLY confused for a few nights.
Al's throat is still sore, but his voice is so much better. I can always tell when he's had too much visiting, as the voice begins to fade. But on a daily basis, it seems to get stronger, and he sounds more like Al than that guy from Swing Blade!!! (BTW, he doesn't appreciate that comparison!) LOL
He's felt pretty decent, enough to suggest we visit the State Fair in Hutchinson. (Yes, Connie, OUR State Fair!!!) We got a lovely day out of the deal and spent the morning traipsing all over the fairgrounds. We had lunch at my favorite burger joint, and I got to visit a real, live SB store. (And came out empty handed!!!)
The Social Security Disability application was approved, to be effective November 1, but he doesn't receive a check until approximatley December 21. So it may be a long, lean Fall. Naturally, the van died on me last night 'clear' across town (took Al 15 minutes to get there!). Good news is it was easily repaired, and for less than $100. Another reminder to be thankful for good friends who look out for us -- Randy fetched the van with his wrecker, hauled it down to the shop, and let it stay there while the alternator was rebuilt and replaced. Rambo, in case Al didn't say it properly, you'll be at the top of my next cookie list, promise!!!
We've even gone out bicycling on the tandem in this beautiful weather we've been having. Al needs to wear a mask, though, as he always 'drives' the bike, and when the air is cool, it pretty much takes his breath away.
We both felt a little better about his condition after we ran into Nurse Betty from Dr. Beck's office in a local store. She was happy to see us (we were last there on her day off), as she hated missing us, and was excited by how well Al is progressing. Guess it's all in your perspective!!! I'd mentioned to Al that we had been used to seeing Dr. Beck early in the week and early in the day, and his last appointment was probably one of his last of the week late in the day. So I'm going to double check the time we're scheduled to see him in November, and make sure it's early!!!
We had SO much company this weekend, it was like grand central station here. And I have to admit, I loved it!!! We finally 'allowed' Doug and Pam to come visit for the weekend; they brought some DVDs and Pam brought her SB supplies, so we had a good time. It was fun bopping around town in their new little Hyundai Santa Fe. Yes, Jessica, I've brought another scrapper into the fold. And we learned you can substitute lemon pudding for butterscotch in bubble bread; in fact I liked it better that way!!!
Long story short, both my sisters visited as well, and Vicki brought her whole family together for a meal in Salina (thanks for the extra drive, Josh, we were both happy to see you). Poor Desi (Daisy?) got a full helping of Potter and then some, and didn't run into the woods screaming. And I swear both Nathan and Josh get taller every time I see them!!! (or am I getting shorter???)
Al's back to mowing our lawn, and has dug up some of those weed trees that have SO been annoying me in the garden. He's got some serious cucumber vines going on out back, and is hosting a garage sale (YUCK!) this weekend. (I'll be hiding out in the den or back yard!!!)
Anywho, please continue to keep us in your hearts and your thoughts. It's been a long, hard summer, so we're embracing this 'honeymoon' of fall, and hoping for nothing but improvements this winter.
xoxoxo
Sharon
Thursday, September 01, 2005
Update on Al #33
Well, for me, it's been a frustrating week. I feel like we don't know much of anything more than we did a week ago. But the eternal optimist is still functional (though sometimes VERY small, and only in the background).
The two things we heard today were that the tumor is smaller. Excuse me! The MASS has gotten smaller. And they didn't want to put Al on any additional treatment (i.e., chemo). So those are my good news pieces.
Al came away feeling that Dr. Beck believes that radiation didn't do its job, but I didn't hear/appreciate that. Al also believes Dr. Beck sorta threw in the towel when the first type of chemo didn't work for him (remember, the allergic reaction?). I disagree. The term Dr. Beck used was that he's 'moderately optimistic' about his treatment. He confirmed what Dr. Berquist said -- that the radiation is still affecting the tumor. Remember, its job was to 'sterilize' the cancer cells, so that they could not reproduce. So if things are going right, as the 'older' cancer cells die off, no new cancer cells are replacing them, because they're not dividing and making more.
The CT scan from last week showed the MASS is 2.6 cm x 2 cm. I've found the references from the reports in Boston, where radiology stated it was 3.6 x 3.2 cm; Dr. Mathisen's report states the length of the tumor at 5.2 from top to bottom, but doesn't give any other measurement other than the relative location in the trachea.
So now you know as much as we do. Al no longer has to have weekly labs, just monthly flushing of his infuse-a-port, which he discussed removing at some point. He's scheduled for another CT, bronchoscopy and follow-up with Dr. Beck the first week of November. In the meantime? Rest, eat healthy, exercise to build up your stamina.
Surgery is not an option. Dr. Beck says if that were an option, they would have started with surgery.
Sorry, I'm a little scattered. I'm tired; it's been an emotional day.
Paula, hang in there, and thanks for your words of encouragement. You've been a wonderful inspiration for Al's recovery; I appreciate you following up with him, and it was great to see you tonight.
xoxoxo
Sharon
The two things we heard today were that the tumor is smaller. Excuse me! The MASS has gotten smaller. And they didn't want to put Al on any additional treatment (i.e., chemo). So those are my good news pieces.
Al came away feeling that Dr. Beck believes that radiation didn't do its job, but I didn't hear/appreciate that. Al also believes Dr. Beck sorta threw in the towel when the first type of chemo didn't work for him (remember, the allergic reaction?). I disagree. The term Dr. Beck used was that he's 'moderately optimistic' about his treatment. He confirmed what Dr. Berquist said -- that the radiation is still affecting the tumor. Remember, its job was to 'sterilize' the cancer cells, so that they could not reproduce. So if things are going right, as the 'older' cancer cells die off, no new cancer cells are replacing them, because they're not dividing and making more.
The CT scan from last week showed the MASS is 2.6 cm x 2 cm. I've found the references from the reports in Boston, where radiology stated it was 3.6 x 3.2 cm; Dr. Mathisen's report states the length of the tumor at 5.2 from top to bottom, but doesn't give any other measurement other than the relative location in the trachea.
So now you know as much as we do. Al no longer has to have weekly labs, just monthly flushing of his infuse-a-port, which he discussed removing at some point. He's scheduled for another CT, bronchoscopy and follow-up with Dr. Beck the first week of November. In the meantime? Rest, eat healthy, exercise to build up your stamina.
Surgery is not an option. Dr. Beck says if that were an option, they would have started with surgery.
Sorry, I'm a little scattered. I'm tired; it's been an emotional day.
Paula, hang in there, and thanks for your words of encouragement. You've been a wonderful inspiration for Al's recovery; I appreciate you following up with him, and it was great to see you tonight.
xoxoxo
Sharon
Monday, August 29, 2005
Update on Al #32
Hi everybody!!! Short and sweet tonight.
Al didn't sleep great last night -- I blame nerves; he's made up for it today. The bronchoscopy was short and sweet as well. Evidently Al had quite the coughing jag after they spritzed his throat to deaden it, so Dr. Berquist had a hard time getting the scope in. He's still quite swollen and reddened, which Dr. B attributes to the radiation, and said that will continue to get better as time passes. He was only able to do a 'brief' exam, which showed his airway is much clearer, which the doc says is 'very encouraging'.
When I asked about the biopsy, he looked at me like I was from another planet. "There's no need; we know the tumor is cancerous." He said it should continue to shrink -- for 2-6 MONTHS -- from the radiation and chemo, and wants to do another bronch in 2-3 months, once the redness and swelling has reduced further. He was amazed at how much more activity Al's doing now -- like riding his bike AT ALL, let alone across town and back (I didn't tell him about mowing the lawn!) -- and reminded me that in April, he couldn't even walk across Lowe's without getting winded.
Al expected nothing less, if you listen to him. You know better when you look at him! So I am 'guardedly optimistic'. Seems this is the first GOOD news we've had about this tumor, and I frankly don't know how to react to good news yet. I'll let you know what we hear from Dr. Beck on Thursday.
Thanks for all your thoughts and prayers. Seems it's really working!!!
xoxoxo
Sharon
Al didn't sleep great last night -- I blame nerves; he's made up for it today. The bronchoscopy was short and sweet as well. Evidently Al had quite the coughing jag after they spritzed his throat to deaden it, so Dr. Berquist had a hard time getting the scope in. He's still quite swollen and reddened, which Dr. B attributes to the radiation, and said that will continue to get better as time passes. He was only able to do a 'brief' exam, which showed his airway is much clearer, which the doc says is 'very encouraging'.
When I asked about the biopsy, he looked at me like I was from another planet. "There's no need; we know the tumor is cancerous." He said it should continue to shrink -- for 2-6 MONTHS -- from the radiation and chemo, and wants to do another bronch in 2-3 months, once the redness and swelling has reduced further. He was amazed at how much more activity Al's doing now -- like riding his bike AT ALL, let alone across town and back (I didn't tell him about mowing the lawn!) -- and reminded me that in April, he couldn't even walk across Lowe's without getting winded.
Al expected nothing less, if you listen to him. You know better when you look at him! So I am 'guardedly optimistic'. Seems this is the first GOOD news we've had about this tumor, and I frankly don't know how to react to good news yet. I'll let you know what we hear from Dr. Beck on Thursday.
Thanks for all your thoughts and prayers. Seems it's really working!!!
xoxoxo
Sharon
Sunday, August 28, 2005
Update on Al #31
My horoscope for today was:
While I was plugging along in the dirt (and painting those weed trees with RoundUp), Al was in the garage troubleshooting some things on the car. (See photo of one VERY sweaty Al with the OTHER love of his life!) One of them had to do with the 'kick down', so OMG, now it really runs like a bat out of 7734, and the other was the cursed cruise control. It was kinda humorous, because I rode along with him for the first test drive (mainly the kick down thing), and then he'd pop out back to tell me he was going out again. A bit later he'd pop back out to me to tell me he was going again. I hadn't realized an HOUR had passed, and he'd been in the garage most of that time. He wound up talking to the cruise company several times on the phone, who finally told him to return it for exchange; well the store no longer carries them, so he'll be following up with the compnay for a direct exchange of some sort.
We actually discussed driving out to Russell for a visit, as he's feeling quite well, and hasn't seen his mom for a few weeks, and we hadn't seen Nathan (my nephew) since he came home from Germany last week, but vetoed it to get things done around here. And I want to work some this weekend to get a head start on being gone for end of month.
Anywho, we got cleaned up early afternoon and decided to head out to Red Lobster for our ritual anniversary supper of King Crab. At 2:30 in the afternoon, they seated us in the lobby to wait for seating. It wasn't that there were so many customers there at the time, the hostess explained, but that they didn't have the staff to handle the customers who'd come in! We left feeling lucky we'd had to wait, because while we were waiting to go IN, out walks this beautiful young woman closely tailed by my oldest nephew!!! BYW would be Nate's girlfriend, Desi, of course, whose sister lives here in Salina. So they sat down to chat, we had a nice little visit, and I gave them directions to Shelley's.
And yes, Stacy, Al was able to savor his King Crableg meal (thanks for asking!). We decided this was ONE thing we should definitely not change this year.
We came home, and I popped into Chat and Al entertained himself -- resting somewhere cool in the house. Sunroom ladies, I'm sorry I didn't make it back to Chat tonight!!! Al came up and wanted some smooth ice cream, so we bopped out to DQ. On the way over there, we drove past a dear friend we haven't seen in AGES, and decided we'd stop by her house before going home. Well, she'd seen us too, and turned around to DQ to touch base!!! So we went by Lynn's house, and talked about everything under the sun, caught up a little, and lifted our spirits even more -- until 11:00 this evening.
People, I can't even remember when I was out of BED at 11:00 in the evening, let alone just coming home at that hour!!!
So, all in all, I must definitely call this a GOOD day. It's felt so normal, like a regular summer Saturday. I actually allowed myself yesterday to fantasize about getting GOOD news from the doctor this week. Things are looking up.
I just can't get over what a difference the past couple of weeks have made for Al. He's physically feeling better -- though he realizes he has no stamina and has a long recovery ahead -- and he's eating more (still supplementing with Boost/Ensure several times a day), but he just LOOKS so much better. Except his beard -- the part under his chin hasn't grown back in yet, and this looks weird to me! He's gotten a bit of a tan, and looks pretty normal -- albeit 43 pounds lighter than this time last summer. Feeling better and being able to DO a few things has also lifted his spirits a great deal, and though we talk about being tense for Monday, you'd never see it in him today.
Guarded optimism, right???
Well, please continue to keep Al in your hearts for good news on Monday (we probably really won't KNOW anything then), and a clean slate when we return to Dr. Beck Thursday afternoon. You'll hear from me again as soon as I know anything.
Off to bed.
xoxoxo
Sharon
This is a day where you could greatly benefit from spending some time outdoors in quiet reflection, dear Leo. Even a half-hour's walk through a city garden will help you feel more rested and grounded. You have been working especially hard lately, and need some time to refill the well of your soul. Don't deny yourself some down time. Otherwise, you are at risk of burning out.
So, naturally, since Doug & Pam had decided not to visit this weekend, I heeded the stars, and spent the morning working in our yard. I filled up half a dumpster with weeds and prunings, and to look around, you'd never know I'd done a !@#%$*! thing!!! But it felt so good.
While I was plugging along in the dirt (and painting those weed trees with RoundUp), Al was in the garage troubleshooting some things on the car. (See photo of one VERY sweaty Al with the OTHER love of his life!) One of them had to do with the 'kick down', so OMG, now it really runs like a bat out of 7734, and the other was the cursed cruise control. It was kinda humorous, because I rode along with him for the first test drive (mainly the kick down thing), and then he'd pop out back to tell me he was going out again. A bit later he'd pop back out to me to tell me he was going again. I hadn't realized an HOUR had passed, and he'd been in the garage most of that time. He wound up talking to the cruise company several times on the phone, who finally told him to return it for exchange; well the store no longer carries them, so he'll be following up with the compnay for a direct exchange of some sort.We actually discussed driving out to Russell for a visit, as he's feeling quite well, and hasn't seen his mom for a few weeks, and we hadn't seen Nathan (my nephew) since he came home from Germany last week, but vetoed it to get things done around here. And I want to work some this weekend to get a head start on being gone for end of month.
Anywho, we got cleaned up early afternoon and decided to head out to Red Lobster for our ritual anniversary supper of King Crab. At 2:30 in the afternoon, they seated us in the lobby to wait for seating. It wasn't that there were so many customers there at the time, the hostess explained, but that they didn't have the staff to handle the customers who'd come in! We left feeling lucky we'd had to wait, because while we were waiting to go IN, out walks this beautiful young woman closely tailed by my oldest nephew!!! BYW would be Nate's girlfriend, Desi, of course, whose sister lives here in Salina. So they sat down to chat, we had a nice little visit, and I gave them directions to Shelley's.
And yes, Stacy, Al was able to savor his King Crableg meal (thanks for asking!). We decided this was ONE thing we should definitely not change this year.
We came home, and I popped into Chat and Al entertained himself -- resting somewhere cool in the house. Sunroom ladies, I'm sorry I didn't make it back to Chat tonight!!! Al came up and wanted some smooth ice cream, so we bopped out to DQ. On the way over there, we drove past a dear friend we haven't seen in AGES, and decided we'd stop by her house before going home. Well, she'd seen us too, and turned around to DQ to touch base!!! So we went by Lynn's house, and talked about everything under the sun, caught up a little, and lifted our spirits even more -- until 11:00 this evening.
People, I can't even remember when I was out of BED at 11:00 in the evening, let alone just coming home at that hour!!!
So, all in all, I must definitely call this a GOOD day. It's felt so normal, like a regular summer Saturday. I actually allowed myself yesterday to fantasize about getting GOOD news from the doctor this week. Things are looking up.
I just can't get over what a difference the past couple of weeks have made for Al. He's physically feeling better -- though he realizes he has no stamina and has a long recovery ahead -- and he's eating more (still supplementing with Boost/Ensure several times a day), but he just LOOKS so much better. Except his beard -- the part under his chin hasn't grown back in yet, and this looks weird to me! He's gotten a bit of a tan, and looks pretty normal -- albeit 43 pounds lighter than this time last summer. Feeling better and being able to DO a few things has also lifted his spirits a great deal, and though we talk about being tense for Monday, you'd never see it in him today.
Guarded optimism, right???
Well, please continue to keep Al in your hearts for good news on Monday (we probably really won't KNOW anything then), and a clean slate when we return to Dr. Beck Thursday afternoon. You'll hear from me again as soon as I know anything.
Off to bed.
xoxoxo
Sharon
Tuesday, August 23, 2005
Update on Al #30
Hi, all!!! Thought I'd drop you a quick note so you'll know what's up.
Al's CT scan is scheduled for tomorrow morning. We won't know anything about it really until next week. He's going to see the family doctor tomorrow afternoon; he goes every 6 months to see Bos, but we'd put it off.
On Monday, the 29th, he's scheduled for a bronchoscopy, and Dr. Berquist will have access to the CT scan at that time. They'll take biopsies of the area to see whether the cancer is gone. We'll see Dr. Beck on Thursday, September 1 for the results of both the CT scan and the biopsies, and figure out where to go from here at that point in time.
Meanwhile, Al's working on progressing to less soft foods by mouth!!! He's been dying for steak (too early for that yet), but managed grilled chicken on Friday at lunch, so got brave and BBQd ribs (another of MY favorites!) for supper on Saturday. Josh (his boss from Lowe's) bopped over on his supper hour to eat with us, and we had a nice conversation about what's life at Lowe's.
He spent Sunday taking it easy as he didn't sleep so well Saturday evening. Monday he was full of energy, but then today was pooped again. He's still coughing quite a bit as night falls, and wakes up with a coughing jag or four each night.
I'm just plugging away as usual. Work's settling into more of a routine -- now that I'm been doing my new responsibilities for a while, and have actually BEEN there routinely. I'm going with Al to see Bos tomorrow, and taking all day Monday off for his bronch. The anesthesia did some funny things to him last time, so we both thought it best if he didn't stay home alone.
I've spent a crazy amount of time completing the on-line Social Security Disability application. We have a telephone interview on Thursday morning, and then they'll gather medical records, etc., and make their determination. Expect the best, plan for the worst. Anybody who goes to this much trouble to fill out that application (10 hours and counting!) should automatically be granted approval!!
I have been incredibly rude by forgetting to thank Ed & Carol -- the best neighbors ever -- for being so generous with their time and effort. They have been trimming and mowing our lawn all summer long. I can't tell you how much it helps us toward feeling 'normal' to have that well trimmed lawn to look out upon. Al's just hoping he can make it look as well manicured when he's back to doing it again.
Nathan, hope you enjoyed your trip home. Let me know when you get over the jet lag, and we'll figure out how and when we can get together. We're excited to see you, and hear all about your adventures in Germany.
Josh, sounds like you've settled right into college life at KU. Even held your first party of the year, huh??? Hope you enjoy it; don't be a TOTAL stranger.
Pam, hope you found the camper at Lake Wilson where you left it. I didn't realize how severe that storm in Great Bend had been -- until Vic called me to ask whether I'd heard from you this weekend!!! THE KID visited for about an hour this evening -- a bundle full of energy and laughs; and of course, we had to have Cheez-Its, Milk and 'the football movie'!!!
Mom & John, it was good having you hear recently. Sometimes a girl just needs her mom. Hope we'll see you soon.
Doug & Pam, we're looking forward to seeing you guys this weekend. Just a lot going on this next week. Once I wrap my head around the details, we'll be good.
Marcia, I hope Gene's feeling better, and you're getting some rest. Would love to get caught up again soon; seems like forever since we've had the opportunity to Chat.
Rainy and Sandie, thanks for your search on my behalf. I believe I have some coming via UPS.
Anywho, I'm off to review that application and make it official.
Thanks for keeping us in your thoughts and prayers.
xoxoxo
Sharon
Wednesday, August 10, 2005
Update on Al #29
Hiya everybody!!! Hope YOU're staying cool -- it's not so easy here when we're bumping triple digits every day. Sounds like it's going to cool a bit next week, so that'll be a welcome change of pace.
Nothing new happening here. Al's getting a BIT more food by mouth, but mostly pudding, fruit and fresh veggies. He's doing 8-10 bottles of Boost a day, and if he does ANY activity at all, he still loses 1-3 pounds!!! I think he's a bit frustrated he doesn't feel better than this by now -- puhlease, it's been two whole WEEKS since treatment ended!!! But we're impatient for him to feel well again, and more importantly, to find out he IS well again.
He tells me his throat is quite sort -- he blames it on all the coughing -- and he's been producing some tissue samples in his mucous again. He's been having problems sleeping deeply -- mostly dozing -- but that has gotten better since he moved back into the darkened bedroom with the hospital bed. (He'd been sleeping on the couch for a bit, as that was the only place he was comfortable.) Pain relievers don't help his throat feel better, so he slowed down on food by mouth and bumped up the PEG 'feedings'.
Meanwhile he's having weekly blood work drawn. No, I haven't called to see what the numbers are, but I know if there were anything to worry about Nurse Betty would be getting me on the phone. I've considered calling them for a stronger anti-anxiety med -- while the Ativan is really a godsend to me, it doesn't seem to faze him -- but he's fighting that concept as well. Tough it out, I guess. Damn, if I didn't know better, I'd think he were more stubborn than me.
I have it a bit easier. I'm sleeping well 6 out of 7 nights/week, and mostly not well because I've fouled up my pattern. I have the luxury of going to work every day and being distracted those hours of the day, and I have LOTS of hobbies I do indoors to beat the heat this time of year. I didn't even spend any time working in the garden last weekend -- decided it was too hot, and I was too tired!!!
Cleo, your bug that killed off the roses with the 'spider' webs has gotten all over my Cosmos; I had to cut out about half of them out by the pond.
Pam and Vicki have been stopping in pretty regularly, and have each taken turns of getting me out of the house to do something fun -- even if it's just having a Pepsi at the Mall or visiting the LSS.
Al did go out to Lowe's over the weekend and discovered -- to MY great dismay -- that his job was posted as needing filled. He wasn't terribly surprised, as they've held HIS position open these 3 months he's been gone, and they've assured him he will be welcomed back with open arms if/when he can go back to work. He glossed over it, but I think it upset him more than he'd like to admit.
WARNING, WARNING, WARNING: ARMCHAIR PSYCHOLOGIST ON THE LOOSE!!!
Right now, I think he feels a little forgotten and a lot alone. Stop by for a visit during the day. Pick up the phone to say hi. If he doesn't feel like visiting or isn't able to croak out a conversation, he'll tell you. Meanwhile, he knows you've thought of him. (Just don't tell him I asked you to call!) Drop him a card. Whatever breaks up the day will be very helpful towards his recovery.
OK, I'll be normal again.
Meanwhile, Rich -- call me tomorrow and tell me where we're going to have our birthday luncheon. And enjoy your last night in your TWENTIES!!!
Mooney, haven't heard from you guys. Did you fall off the planet??? I have a little 3rd of July thing to send you -- I was going to bring as a 'hostess gift' -- just haven't gotten it posted. What's going on with Becky now that she's all graduated?
Kroeger, how goes working for yourself?
Mom, thanks for the frequent notes and the beautiful birthday card.
Girls -- and you KNOW who you are -- thanks for the wonderful lunch break yesterday. I really enjoyed our visit -- as always -- but I think we should do this more often. Whatcha doing March 21???
Please continue to keep us in your thoughts and prayers. I'm finding this time period probably harder than treatment time. But I know it's all about the 'not knowing'.
Reminder: Al has a CT scan on August 24, followed by a bronchoscopy with biopsy on August 29. We'll meet with Dr. Beck on September 1 for the results, hoping the cancer will be long gone. If not, we go to Plan L.
Well, I'm going to log off this novella and go see what Al's up to by now. Thanks again for all your support, in whatever fashion you've provided it.
xoxoxo
Sharon
Nothing new happening here. Al's getting a BIT more food by mouth, but mostly pudding, fruit and fresh veggies. He's doing 8-10 bottles of Boost a day, and if he does ANY activity at all, he still loses 1-3 pounds!!! I think he's a bit frustrated he doesn't feel better than this by now -- puhlease, it's been two whole WEEKS since treatment ended!!! But we're impatient for him to feel well again, and more importantly, to find out he IS well again.
He tells me his throat is quite sort -- he blames it on all the coughing -- and he's been producing some tissue samples in his mucous again. He's been having problems sleeping deeply -- mostly dozing -- but that has gotten better since he moved back into the darkened bedroom with the hospital bed. (He'd been sleeping on the couch for a bit, as that was the only place he was comfortable.) Pain relievers don't help his throat feel better, so he slowed down on food by mouth and bumped up the PEG 'feedings'.
Meanwhile he's having weekly blood work drawn. No, I haven't called to see what the numbers are, but I know if there were anything to worry about Nurse Betty would be getting me on the phone. I've considered calling them for a stronger anti-anxiety med -- while the Ativan is really a godsend to me, it doesn't seem to faze him -- but he's fighting that concept as well. Tough it out, I guess. Damn, if I didn't know better, I'd think he were more stubborn than me.
I have it a bit easier. I'm sleeping well 6 out of 7 nights/week, and mostly not well because I've fouled up my pattern. I have the luxury of going to work every day and being distracted those hours of the day, and I have LOTS of hobbies I do indoors to beat the heat this time of year. I didn't even spend any time working in the garden last weekend -- decided it was too hot, and I was too tired!!!
Cleo, your bug that killed off the roses with the 'spider' webs has gotten all over my Cosmos; I had to cut out about half of them out by the pond.
Pam and Vicki have been stopping in pretty regularly, and have each taken turns of getting me out of the house to do something fun -- even if it's just having a Pepsi at the Mall or visiting the LSS.
Al did go out to Lowe's over the weekend and discovered -- to MY great dismay -- that his job was posted as needing filled. He wasn't terribly surprised, as they've held HIS position open these 3 months he's been gone, and they've assured him he will be welcomed back with open arms if/when he can go back to work. He glossed over it, but I think it upset him more than he'd like to admit.
WARNING, WARNING, WARNING: ARMCHAIR PSYCHOLOGIST ON THE LOOSE!!!
Right now, I think he feels a little forgotten and a lot alone. Stop by for a visit during the day. Pick up the phone to say hi. If he doesn't feel like visiting or isn't able to croak out a conversation, he'll tell you. Meanwhile, he knows you've thought of him. (Just don't tell him I asked you to call!) Drop him a card. Whatever breaks up the day will be very helpful towards his recovery.
OK, I'll be normal again.
Meanwhile, Rich -- call me tomorrow and tell me where we're going to have our birthday luncheon. And enjoy your last night in your TWENTIES!!!
Mooney, haven't heard from you guys. Did you fall off the planet??? I have a little 3rd of July thing to send you -- I was going to bring as a 'hostess gift' -- just haven't gotten it posted. What's going on with Becky now that she's all graduated?
Kroeger, how goes working for yourself?
Mom, thanks for the frequent notes and the beautiful birthday card.
Girls -- and you KNOW who you are -- thanks for the wonderful lunch break yesterday. I really enjoyed our visit -- as always -- but I think we should do this more often. Whatcha doing March 21???
Please continue to keep us in your thoughts and prayers. I'm finding this time period probably harder than treatment time. But I know it's all about the 'not knowing'.
Reminder: Al has a CT scan on August 24, followed by a bronchoscopy with biopsy on August 29. We'll meet with Dr. Beck on September 1 for the results, hoping the cancer will be long gone. If not, we go to Plan L.
Well, I'm going to log off this novella and go see what Al's up to by now. Thanks again for all your support, in whatever fashion you've provided it.
xoxoxo
Sharon
Wednesday, July 27, 2005
Update on Al #28
WOO-HOO! Treatment is over!!!
Saw Dr. Perez-Tamayo on Monday, who gave us a big smile, a congratulations and a book on "living after cancer treatment".
With Dr. Beck on Tuesday, got follow-up planned. Al's scheduled for a CT scan on Wednesday, August 24. This will be followed by another fiber-optic bronchoscopy on Monday, August 29. Dr. Berquist will do that, and take biopsies of his trachea again. Then we meet with Dr. Beck on Thursday, September 1 to get the results and figure out where to go from there.
Al's happy to be finished with treatment, and seems disappointed that he's not feeling really better already. =) Dr. Beck told him he should feel quite a bit better in a couple of weeks, and to keep what he's been doing -- rest when he needs to rest, be more active when he feels up to being more active.
I can tell you he's really looking forward to having some solid foods again. Still into the Boost for most of his nutrition, though we picked up some veggies ("I can steam them into mush to eat!") and fruits -- the peaches are just too beautiful to walk away from. He cuts them into small pieces and sucks on them til they're gone!!!
He's still coughing up a lot of thick mucous -- mostly at night -- which Dr. Beck says is from the radiation. Again with the two week mark. I'm holding out for an actual meal in a RESTAURANT with my husband for our anniversary (August 27), as my birthday will be pushing it!!! =)
After a total meltdown yesterday, I'm much better today. Just fighting fatigue and stress a bit, so I'm getting a lot of sleep!!!
I'm really look
Saw Dr. Perez-Tamayo on Monday, who gave us a big smile, a congratulations and a book on "living after cancer treatment".
With Dr. Beck on Tuesday, got follow-up planned. Al's scheduled for a CT scan on Wednesday, August 24. This will be followed by another fiber-optic bronchoscopy on Monday, August 29. Dr. Berquist will do that, and take biopsies of his trachea again. Then we meet with Dr. Beck on Thursday, September 1 to get the results and figure out where to go from there.
Al's happy to be finished with treatment, and seems disappointed that he's not feeling really better already. =) Dr. Beck told him he should feel quite a bit better in a couple of weeks, and to keep what he's been doing -- rest when he needs to rest, be more active when he feels up to being more active.
I can tell you he's really looking forward to having some solid foods again. Still into the Boost for most of his nutrition, though we picked up some veggies ("I can steam them into mush to eat!") and fruits -- the peaches are just too beautiful to walk away from. He cuts them into small pieces and sucks on them til they're gone!!!
He's still coughing up a lot of thick mucous -- mostly at night -- which Dr. Beck says is from the radiation. Again with the two week mark. I'm holding out for an actual meal in a RESTAURANT with my husband for our anniversary (August 27), as my birthday will be pushing it!!! =)
After a total meltdown yesterday, I'm much better today. Just fighting fatigue and stress a bit, so I'm getting a lot of sleep!!!
I'm really look
Update on Al #28 3/4
Sorry about that -- the CAT stomped my keyboard and the message got sent mid-sentence.
What I was saying is that I'm REALLY looking forward to going to Zach's (Cody's soccer and dinner date buddy) on Saturday.
And going to our hairdresser's baby shower with Shelley on August 6.
It's been SO good to get out to see 'the girls' recently, and I must remember to do that.
Pam, I was wrong -- those papers were HALF off, so I got you the Autumn Stack AND the textured coordinating cardstock. When are you coming up next and we'll settle up?
Mom, hope your gout is clearing up, and you're getting more comfortable.
As always, Carol & Ed, thanks for everything. You are the best neighbors we could have ever lucked into.
Well, I'm off to get comfy and get more sleep!!! Talk to you all soon.
xoxoxo
Sharon
Thursday, July 21, 2005
Update on Al #27
I got a hoot out of my horoscope from this morning:
Your energy and spunk should finally be returning today from a couple days of being slightly down, dear Leo. You should enjoy a good mood all day and your powers of persuasion are quite strong. There is an extra boost of energy behind your emotions and you will find that this might lead to some sort of transformation deep within. Whatever you do today, do it with passion. Let your courageous nature shine through.
Lo and behold, today WAS a better day. 'course, tomorrow IS Friday!!!
We're plugging along, counting down the days til treatment is over. Al is not sleeping much, and not well when he can, so that's very frustrating. He takes on some Ensure or Boost every 2-3 hours to keep something on his stomach, which helps with that nauseous feeling. We're both counting down the hours til he'll feel better -- probably Saturday afternoon or so.
He'll have ONE more radiation treatment on Monday, and presumably see Dr. Perez-Tamayo at that time. Then he's scheduled to see Dr. Beck again on Tuesday, at which time they will have scheduled the follow-up tests Al will need -- CT and/or PET scan and a bronchoscopy, to see whether the cancer is gone.
I'm still trying to take one day at a time, but Al confessed to me last night that he'd thought about what happens if the cancer isn't gone. We talked it over and decided to stop worrying about these things we can't control, and concentrate and focus on what we CAN control. Like solid foods. Eating together in a restaurant again. Having enough energy to do more than fold a basket of towels. Sleeping in our waterbed -- TOGETHER. Cruisin in the Vette to noplace special. NOT going to the Cancer Center every day!!! Gaining strength and muscle mass again. Trying out some of those recipes he's been seeing during the day on the Food Network. Getting OUT to see friends again. Regaining his full speaking voice (I can't WAIT to hear his regular voice again, instead of this 'Slingblade' version!).
He's even consented to being good and taking another day of chemo as well. (One day doesn't get to him like 3-4 will.)
So, keep Al in your hearts, thoughts and prayers, and take good care of each other, too.
xoxoxo
Sharon
Your energy and spunk should finally be returning today from a couple days of being slightly down, dear Leo. You should enjoy a good mood all day and your powers of persuasion are quite strong. There is an extra boost of energy behind your emotions and you will find that this might lead to some sort of transformation deep within. Whatever you do today, do it with passion. Let your courageous nature shine through.
Lo and behold, today WAS a better day. 'course, tomorrow IS Friday!!!
We're plugging along, counting down the days til treatment is over. Al is not sleeping much, and not well when he can, so that's very frustrating. He takes on some Ensure or Boost every 2-3 hours to keep something on his stomach, which helps with that nauseous feeling. We're both counting down the hours til he'll feel better -- probably Saturday afternoon or so.
He'll have ONE more radiation treatment on Monday, and presumably see Dr. Perez-Tamayo at that time. Then he's scheduled to see Dr. Beck again on Tuesday, at which time they will have scheduled the follow-up tests Al will need -- CT and/or PET scan and a bronchoscopy, to see whether the cancer is gone.
I'm still trying to take one day at a time, but Al confessed to me last night that he'd thought about what happens if the cancer isn't gone. We talked it over and decided to stop worrying about these things we can't control, and concentrate and focus on what we CAN control. Like solid foods. Eating together in a restaurant again. Having enough energy to do more than fold a basket of towels. Sleeping in our waterbed -- TOGETHER. Cruisin in the Vette to noplace special. NOT going to the Cancer Center every day!!! Gaining strength and muscle mass again. Trying out some of those recipes he's been seeing during the day on the Food Network. Getting OUT to see friends again. Regaining his full speaking voice (I can't WAIT to hear his regular voice again, instead of this 'Slingblade' version!).
He's even consented to being good and taking another day of chemo as well. (One day doesn't get to him like 3-4 will.)
So, keep Al in your hearts, thoughts and prayers, and take good care of each other, too.
xoxoxo
Sharon
Tuesday, July 12, 2005
Update on Al #26
Well, things have been looking up. Al felt pretty decent most of the weekend, and we actually slept through the night -- TWICE!!! Then he tells me he was up around 2 am, having a bottle of Boost -- his stomach stays calmer if he can keep SOMETHING on it. But we're both getting some rest, and that's always a good thing.
The oral chemo seems tolerable -- though it does make Al feel sicker to his stomach as the week goes on -- and we're managing decently with a little help from Zofran in the morning and Phenergan in the evening. He's learning what helps and what irritates, so he's managing it pretty well just now. In fact, it's gone well enough that we were able to attend Stacie's going away party -- in a BAR!!! -- and stayed and laughed and hugged for about an hour. (Thanks for including us, guys!) This was followed by a stop at the DQ for a Mr. Misty. Those and ICEEs are Al's new favorite thing!!! These were the first things he'd had by mouth for several days.
Al just popped in and wanted me to tell you all "Weeds are Hell". LOL He's been going out in the yard and pulling weeds in the flower beds for soemthing to do when he feels decent. He seems impervious to the heat these days, and is a real visual treat during these outings -- generic jean shorts with sandals or tennies, tank top coverd with an unbuttoned long-sleeve chambray shirt and wide brim hat. NOTE TO SELF: catch a picture!!!
He's feeling well enough that he even managed some cantaloup, and last night enjoyed eating a peach. I think it took him about an hour and a half, but he really enjoyed it!!! Everything else gets blended and put through the PEG, but he's more interested in soups and FLAVORS than boring plain Ensure. (He's switched to Boost; seems to settle better for him.)
Saw Dr. Perez-Tamayo yesterday which was pretty much a waste of our time. She did give Al an ointment to put on his chin/throat and upper back, and he has some areas that are darkened by radiation. Looks like a 3-day-old sunburn -- which on Al is known as a deep TAN!!! His last radiation should be next Friday, June 22. He's looking forward to that, and we're convinced his voice WILL come back, as it gets stronger over the weekend when he doesn't have treatment.
We saw Carol (the PA in Dr. Beck's office) today. She's very encouraged with his labs, but we're now watching his hemoglobin. They don't want him to get too anemic because of his past heart history, so if next week's labs show too low, they're going to give him some blood to build it back up. She told us they'd stop his chemo when the radiation is over, so Al's REALLY counting down now!!!
I asked her what happens after treatment. She said 4-6 weeks after treatment is through, they'll do a CT and/or PET scan and another bronchoscopy. He'll have quite a bit of follow-up, and of course we all hope and expect he'll come up clean. So then I got brave and asked her what happens if there's still cancer left. She brought the chemo book in the room and showed us all the various 'recipes' for chemotherapy for this type of cancer treatment, and assured us there is still more to do. The hard part to that will be working around Al's allergies, but "we're not gonna just leave you hanging".
She did advise that Al get his business in order, as this IS the second 'elephant in the living room' he's managed to shoot down (she's an optimist; I like that in a doctor). But it was more of a 'you never know' kind of suggestion than anything.
My sister Vicki came up Sunday afternoon to take me out for a 'coke'. After regaling Al and me with stories of Nate's adventures all over Europe, we went to the mall and enjoyed a pretzel and a Diet Pepsi, and a bunch of girl talk. Thanks, Ick, it was a great break.
Looking forward to Pam's visit Saturday -- more 'girls day out', with a trip to Scrapbook Chic on the agenda. Might even catch a movie.
I enjoyed the earlier afternoon on Sunday with my Stampin' Up! 'gals', learning a new technique. It was fun to just be among friends having a good time again for a change!!!
Must get going now -- I'm out of milk (and those of you who KNOW me know that's not an option come morning!), and Al's craving a shake or something.
Thanks for your notes and calls and the beautiful cards, and for keeping us in your prayers and thoughts. I dunno about Al, but it makes ME feel better!!! (And yes, I sounded a bit pathetic last time, but my optimism has returned, and life seems almost normal!)
xoxoxo
Sharon
The oral chemo seems tolerable -- though it does make Al feel sicker to his stomach as the week goes on -- and we're managing decently with a little help from Zofran in the morning and Phenergan in the evening. He's learning what helps and what irritates, so he's managing it pretty well just now. In fact, it's gone well enough that we were able to attend Stacie's going away party -- in a BAR!!! -- and stayed and laughed and hugged for about an hour. (Thanks for including us, guys!) This was followed by a stop at the DQ for a Mr. Misty. Those and ICEEs are Al's new favorite thing!!! These were the first things he'd had by mouth for several days.
Al just popped in and wanted me to tell you all "Weeds are Hell". LOL He's been going out in the yard and pulling weeds in the flower beds for soemthing to do when he feels decent. He seems impervious to the heat these days, and is a real visual treat during these outings -- generic jean shorts with sandals or tennies, tank top coverd with an unbuttoned long-sleeve chambray shirt and wide brim hat. NOTE TO SELF: catch a picture!!!
He's feeling well enough that he even managed some cantaloup, and last night enjoyed eating a peach. I think it took him about an hour and a half, but he really enjoyed it!!! Everything else gets blended and put through the PEG, but he's more interested in soups and FLAVORS than boring plain Ensure. (He's switched to Boost; seems to settle better for him.)
Saw Dr. Perez-Tamayo yesterday which was pretty much a waste of our time. She did give Al an ointment to put on his chin/throat and upper back, and he has some areas that are darkened by radiation. Looks like a 3-day-old sunburn -- which on Al is known as a deep TAN!!! His last radiation should be next Friday, June 22. He's looking forward to that, and we're convinced his voice WILL come back, as it gets stronger over the weekend when he doesn't have treatment.
We saw Carol (the PA in Dr. Beck's office) today. She's very encouraged with his labs, but we're now watching his hemoglobin. They don't want him to get too anemic because of his past heart history, so if next week's labs show too low, they're going to give him some blood to build it back up. She told us they'd stop his chemo when the radiation is over, so Al's REALLY counting down now!!!
I asked her what happens after treatment. She said 4-6 weeks after treatment is through, they'll do a CT and/or PET scan and another bronchoscopy. He'll have quite a bit of follow-up, and of course we all hope and expect he'll come up clean. So then I got brave and asked her what happens if there's still cancer left. She brought the chemo book in the room and showed us all the various 'recipes' for chemotherapy for this type of cancer treatment, and assured us there is still more to do. The hard part to that will be working around Al's allergies, but "we're not gonna just leave you hanging".
She did advise that Al get his business in order, as this IS the second 'elephant in the living room' he's managed to shoot down (she's an optimist; I like that in a doctor). But it was more of a 'you never know' kind of suggestion than anything.
My sister Vicki came up Sunday afternoon to take me out for a 'coke'. After regaling Al and me with stories of Nate's adventures all over Europe, we went to the mall and enjoyed a pretzel and a Diet Pepsi, and a bunch of girl talk. Thanks, Ick, it was a great break.
Looking forward to Pam's visit Saturday -- more 'girls day out', with a trip to Scrapbook Chic on the agenda. Might even catch a movie.
I enjoyed the earlier afternoon on Sunday with my Stampin' Up! 'gals', learning a new technique. It was fun to just be among friends having a good time again for a change!!!
Must get going now -- I'm out of milk (and those of you who KNOW me know that's not an option come morning!), and Al's craving a shake or something.
Thanks for your notes and calls and the beautiful cards, and for keeping us in your prayers and thoughts. I dunno about Al, but it makes ME feel better!!! (And yes, I sounded a bit pathetic last time, but my optimism has returned, and life seems almost normal!)
xoxoxo
Sharon
Wednesday, July 06, 2005
Update on Al #25
Sorry it's been such a long stretch between updates. As the week progressed, Al got more and more down emotionally as well as physically. His throat got REALLY sore from all the nausea, which is really more coughing up mucous than anything else. But as a result, he didn't want to eat, so we had a VERY challenging weekend. He's down to putting pretty much everything through his PEG tube -- including the last servings of the homemade soups he's enjoyed so much. Cleo, that little Braum hand mixer was an EXCELLENT investment!!! We picked up a really tasty cantaloupe, and he's been working on that all week, about 1/2 cup at a time. Takes him about 2 hours to eat that much, but it's tasty. We've laid in puddings, etc. and he's 'drinking' 4-5 bottles of high protein Boost/Ensure each day -- now that he's realized that's the only way he's going to get through this. It was a tough weekend for both of us.
He refused to take his chemo drugs on Friday night, and I finally called Dr. Beck on Saturday morning. He decided to give Al the weekend 'off' from the chemo. After learning this, Al basically went to sleep and missed Saturday. On Sunday, he got up feeling SO much better than he had been, and we planned to go to Hoisington for Mooney's 3rd of July party. But the weather got a bit nasty, and we punked out. It's a good thing, too, as Al was pretty sick that evening.
Monday he felt a little better and got up and around to do a few things, puttering around in the garage, and we went grocery shopping. We started his chemo again Monday evening, with a dosage of Zofran (anti-nausea) half an hour before. Seemed to help a bit. Meanwhile, he's not sleeping really well or regularly, which makes us BOTH cranky!!! I've put up blackout fabric in 'his' room to try to help him get some sleep.
Saw Dr. Beck on Tuesday, and Al explained how this coughing up mucous is what makes him crazy, that he feels it's coming more from his lungs than his stomach. So they ordered a nebulizer to have breathing treatments as needed. It was delivered this afternoon, and he seems more comfortable tonight. He also prescribed a morphine solution for pain as needed.
We saw Dr. Perez-Tamayo this morning, who reminded us that he now has only 12 more radiation treatments to go. They've been varying the radiation a bit, so he's had a number (sorry, don't remember!) of wider-area treatments (picture the size of a business check). The next 6 treatments will be about 2/3 that range, then the last 7 treatments will be about 1/3 that size. So they're focusing in a bit. Dr. Beck warned these last treatments would be the painful ones; hence the morphine.
Both doctors say he'll have a CT scan or two a couple weeks after treatment is completed, then probably another bronchoscopy with biopsies within a month of the end of treatment, and THAT's when we'll know if the tumor is gone. At least that's how WE understood them. Maybe it's just what we want to hear.
Meanwhile, I've just turned into a big puddle maker!!! For some reason, Monday and Tuesday I was incredibly emotional, and all the Ativan in the world wouldn't make a difference (I tried!). A big part of it is watching the love of my life go through this misery, and not being able to do a damn thing about it to help. Part of it is fear as I start to think about what's next, since treatment is nearly finished. I suppose part is just getting worn down from 10 weeks of doctors and treatment. And a piece or two is from total lack of a routine. Or maybe it's just the fact that we missed Mooney's party (hope you guys didn't blow away)!!!
Sorry to be such a downer this evening, but it's as honest as I can be. My puddles have finally lessened, and I'm hoping Al can get a better night's sleep since he's coughing less. I'm going to sign off to get his drugs set for the morning, and get to bed early.
Thanks for your notes, cards and calls. It really DOES help to know we're in your hearts and prayers.
xoxoxo
Sharon
He refused to take his chemo drugs on Friday night, and I finally called Dr. Beck on Saturday morning. He decided to give Al the weekend 'off' from the chemo. After learning this, Al basically went to sleep and missed Saturday. On Sunday, he got up feeling SO much better than he had been, and we planned to go to Hoisington for Mooney's 3rd of July party. But the weather got a bit nasty, and we punked out. It's a good thing, too, as Al was pretty sick that evening.
Monday he felt a little better and got up and around to do a few things, puttering around in the garage, and we went grocery shopping. We started his chemo again Monday evening, with a dosage of Zofran (anti-nausea) half an hour before. Seemed to help a bit. Meanwhile, he's not sleeping really well or regularly, which makes us BOTH cranky!!! I've put up blackout fabric in 'his' room to try to help him get some sleep.
Saw Dr. Beck on Tuesday, and Al explained how this coughing up mucous is what makes him crazy, that he feels it's coming more from his lungs than his stomach. So they ordered a nebulizer to have breathing treatments as needed. It was delivered this afternoon, and he seems more comfortable tonight. He also prescribed a morphine solution for pain as needed.
We saw Dr. Perez-Tamayo this morning, who reminded us that he now has only 12 more radiation treatments to go. They've been varying the radiation a bit, so he's had a number (sorry, don't remember!) of wider-area treatments (picture the size of a business check). The next 6 treatments will be about 2/3 that range, then the last 7 treatments will be about 1/3 that size. So they're focusing in a bit. Dr. Beck warned these last treatments would be the painful ones; hence the morphine.
Both doctors say he'll have a CT scan or two a couple weeks after treatment is completed, then probably another bronchoscopy with biopsies within a month of the end of treatment, and THAT's when we'll know if the tumor is gone. At least that's how WE understood them. Maybe it's just what we want to hear.
Meanwhile, I've just turned into a big puddle maker!!! For some reason, Monday and Tuesday I was incredibly emotional, and all the Ativan in the world wouldn't make a difference (I tried!). A big part of it is watching the love of my life go through this misery, and not being able to do a damn thing about it to help. Part of it is fear as I start to think about what's next, since treatment is nearly finished. I suppose part is just getting worn down from 10 weeks of doctors and treatment. And a piece or two is from total lack of a routine. Or maybe it's just the fact that we missed Mooney's party (hope you guys didn't blow away)!!!
Sorry to be such a downer this evening, but it's as honest as I can be. My puddles have finally lessened, and I'm hoping Al can get a better night's sleep since he's coughing less. I'm going to sign off to get his drugs set for the morning, and get to bed early.
Thanks for your notes, cards and calls. It really DOES help to know we're in your hearts and prayers.
xoxoxo
Sharon
Tuesday, June 28, 2005
Update on Al #24
Hi, all!
Just a quick note to let you know how things are going. Al had a pretty decent week, with less nausea than prior weeks. Cleo came up from Wichita and took him out to Russell to see their mom (and my family) on Friday, and we pretty much putzed around on Saturday, running errands and the like.
Al took on the role of supervisor Sunday, and directed my nephew Tyler and me. Tyler dug an 8" deep trench from the back of the house to the street, and we connected drainage pipes to the downspouts, then filled the trenches back in. This way, the majority of the run-off from the downspouts runs out to the street, instead of flooding the backyard and/or the neighbor's driveway.
While we were managing the heavy labor (OK, so Tyler did ALL the digging and I did a lot of the filling back in), Al ran a supply line to my pond bed so I can just turn on the soaker hoses at the faucet and water the flower beds in the backyard (instead of dragging a hose to connect to it). Mr. Ingenuity also added a spigot at the edge of the pond, so I can just turn on the spigot to fill the pond when needed!!!
Back to the medical scene, did the Monday doctor visit thing again yesterday. They've decided to give up on the IV chemotherapy for now, and have given him Xeloda, an oral chemo drug which he takes morning and evening 7 days a week. Side effects reported are about the same as one-dose chemo, but fewer people have the side effects, so maybe Al will be lucky in that regard. He took his first dose last night (under my direct supervision -- concern about allergic reactions, you know) with no adverse effects, so perhaps this is our chemo answer. Dr. Beck is most concerned about keeping the radiation going, so if the Xeloda goes well this week, they'll probably try to add the carboplatinum (not sure I'm spelling that right) via IV next week.
The good news is that he's continuing daily (weekdays) radiation. Yesterday was treatment #19 in an expected 38 treatments, so he's halfway finished!!! We treated Tyler & his girlfriend Cara to a steak dinner last night to (a) celebrate and (b) thank Ty for all his hard work -- it WAS 99* out there Sunday!!! Pam & Bob were in town returning THE KID, so they joined us, along with Shelley and Cody. It was a fun evening for both of us, and nice to feel 'normal' for a change!!!
Pam & Doug, give Al a call later in the week about the weekend.
Vicki, thanks for the encouraging words. Hug Cecilia from us when you see her again, and get an e-mail address if she has one, OK?
Josh, take care of that knee. I've been thinking about you a LOT!!! Hope you're running the PTs ragged in no time.
Marcia, I need to hear from you!!! I want to know how you're doing, and ensure you survived your visitors!!!
CJ participants, I actually SCRAPPED this weekend, and should get Pages of Us out tomorrow. Then I'm ready to start on Betcha Didn't Know, and my backlog.
As always, thanks for keeping both of us in your hearts and prayers.
xoxoxo
Sharon
Tuesday, June 21, 2005
Update on Al #23
Finally, some actual good news. The 'nausea' appears to be gone. Hopefully for good! After two of the longest, nastiest weeks of MY life (imagine how it's been for AL!), we saw the PA in Dr. Beck's office yesterday morning. She just sat down with Al and TALKED to him, asking him how he's feeling -- what about this, that, and the other thing? He explained he only felt truly nauseous once or twice; the problem was incredible acid on his stomach. Resa explained that chemo (and to some extent, the radiation) does that -- increasing stomach acid production -- and recommended Prevacid, sending us home with some samples.
He came home and took one immediately, and was relieved within an hour to an INCREDIBLE degree!!! Instead of having chemo in their office, they had him go to the hospital to their infusion therapy department to get his chemotherapy (in case of another allergic reaction). Though they changed the chemo drug from Taxol to Taxitern (I'm sure I'm spelling these wrong, but I haven't bothered to find out), he still had a similar reaction -- tingling from his infusion port, whch spread across his chest. And they gave him an anti-allergan with a couple of bags of saline to resolve that problem and help to re-hydrate him, then he came over to the Cancer Center for his radiation treatment and visit with Dr. Perez-Tamayo. She reminded him to stay out of the sun -- mostly, I think, because his actual COLOR had finally returned to his skin tones!!! (Even Al commented Sunday on how ghastly white he had gotten.)
So the bad news is that he'll have no chemo this week, and when Dr. Beck returns from vacation Monday, we'll be looking forward to seeing what he's going to do next. We were rather anxious that Al's allergic to CHEMOTHERAPY, but were reassured by the other oncologist (Dr. Cathcart-Rake) in the office that there are other chemo drug options for trachea cancer, so not to worry.
The good news is that Al is BACK. After two weeks of wondering whether he could manage this treatment -- expecting "it's only going to get worse!" -- and trying to get him to take on fluids and eat SOMETHING, his appetite is back to full force (we had lunch in a RESTAURANT today!!! -- thanks, Rich!), his ornery is on overload, and Mr. Fix-It is back!!! =) In the past 24 hours, he's replaced the kitchen faucet, returned the old faucet to the store, delivered our old bathroom medicine cabinet to a friend and visited with him, had the propane refilled -- after attempting to prepare our supper (my favorite, salmon!) last night on the grill and running out -- visited with Randy & the guys at the shop, pulled and cleaned a bowlful of radishes, weeded I don't know what, and rebooted the dishwasher (unusual for him!).
Now, keep in mind that ONE of those things has been impossible for him to ATTEMPT in the past two weeks, because he's been unable to keep food or liquids down. The change is dramatic and amazing, and believe me, I am thankful!!!
Meanwhile, I'm trying to catch up on my energy store. I've had my naps after work the past two days, and can say I'm actually caught up again at work. My boss and co-workers have been completely supportive, which I'm incredibly thankful for; I can't imagine working through all this without that luxury. With a little extra sleep thrown in this week, I should be reasonably normal again by the weekend.
Al will have daily radiation treatments through the week, then lab work early on Monday again, a visit with Dr. Beck, and we expect chemo followed by radiation on Monday, continuing with radiation for the rest of the weekdays. According to my calculations, today was radiation #14 of 38 treatments, so we're getting there!!! His throat has not been sore (except from the nausea), which everybody is very relieved about. His appetite is VERY good -- did I mention he's lost 20 pounds in the past four weeks? So I'm thinking we'll be getting him built back up a bit in the next several days.
Anywho, I'm going to sign off for tonight after thanking all of you for keeping us in your thoughts and prayers.
xoxoxo
Sharon
He came home and took one immediately, and was relieved within an hour to an INCREDIBLE degree!!! Instead of having chemo in their office, they had him go to the hospital to their infusion therapy department to get his chemotherapy (in case of another allergic reaction). Though they changed the chemo drug from Taxol to Taxitern (I'm sure I'm spelling these wrong, but I haven't bothered to find out), he still had a similar reaction -- tingling from his infusion port, whch spread across his chest. And they gave him an anti-allergan with a couple of bags of saline to resolve that problem and help to re-hydrate him, then he came over to the Cancer Center for his radiation treatment and visit with Dr. Perez-Tamayo. She reminded him to stay out of the sun -- mostly, I think, because his actual COLOR had finally returned to his skin tones!!! (Even Al commented Sunday on how ghastly white he had gotten.)
So the bad news is that he'll have no chemo this week, and when Dr. Beck returns from vacation Monday, we'll be looking forward to seeing what he's going to do next. We were rather anxious that Al's allergic to CHEMOTHERAPY, but were reassured by the other oncologist (Dr. Cathcart-Rake) in the office that there are other chemo drug options for trachea cancer, so not to worry.
The good news is that Al is BACK. After two weeks of wondering whether he could manage this treatment -- expecting "it's only going to get worse!" -- and trying to get him to take on fluids and eat SOMETHING, his appetite is back to full force (we had lunch in a RESTAURANT today!!! -- thanks, Rich!), his ornery is on overload, and Mr. Fix-It is back!!! =) In the past 24 hours, he's replaced the kitchen faucet, returned the old faucet to the store, delivered our old bathroom medicine cabinet to a friend and visited with him, had the propane refilled -- after attempting to prepare our supper (my favorite, salmon!) last night on the grill and running out -- visited with Randy & the guys at the shop, pulled and cleaned a bowlful of radishes, weeded I don't know what, and rebooted the dishwasher (unusual for him!).
Now, keep in mind that ONE of those things has been impossible for him to ATTEMPT in the past two weeks, because he's been unable to keep food or liquids down. The change is dramatic and amazing, and believe me, I am thankful!!!
Meanwhile, I'm trying to catch up on my energy store. I've had my naps after work the past two days, and can say I'm actually caught up again at work. My boss and co-workers have been completely supportive, which I'm incredibly thankful for; I can't imagine working through all this without that luxury. With a little extra sleep thrown in this week, I should be reasonably normal again by the weekend.
Al will have daily radiation treatments through the week, then lab work early on Monday again, a visit with Dr. Beck, and we expect chemo followed by radiation on Monday, continuing with radiation for the rest of the weekdays. According to my calculations, today was radiation #14 of 38 treatments, so we're getting there!!! His throat has not been sore (except from the nausea), which everybody is very relieved about. His appetite is VERY good -- did I mention he's lost 20 pounds in the past four weeks? So I'm thinking we'll be getting him built back up a bit in the next several days.
Anywho, I'm going to sign off for tonight after thanking all of you for keeping us in your thoughts and prayers.
xoxoxo
Sharon
Thursday, June 16, 2005
Update on Al #22
Hello again!
Come Wednesday morning, Al was feeling MUCH better, back to his ornery self again. So well, in fact, that he hoofed it from the hospital over to the Cancer Center -- carrying his overnight bag and a pillowcase full of sheets -- for his radiation instead of having me pick him up to take him!!!
Had his radiation, we had a good lunch, and he drove himself out to Lowe's to 'see the guys'. Had a nice visit with Ed when he got home, and we watched a movie.
This morning, he work up nauseous again, and has yet to get past it. We're working on an anti-nausea cocktail -- may be too soon to say, but it looks like a combo of Phenergan with Pepcid may be the solution (thanks, Vic!) -- and he's working on some 7-Up and chicken noodle soup. He'll have radiation again tomorrow, then he's done til Monday, when he'll have both chemo and radiation.
The doc pulled the antibiotics, and is having blood drawn every day. This morning's result? "Drink more fluids". Hard to do when you lose them right away!!! Poor guy! I just hate not having any way to make it all feel better.
He also prescribed a steroid to be taken the day before, the day of, and the day after chemo, in order to elminate allergic reactions.
Al's been quite busy when he feels halfway decent to look out for MY well being -- pushing me to head to bed, or take a nap, or go to the Mall just to get out of the house. But I hate being away from him more than necessary; during the day at work is too long already.
I'm going to call it a night here so I can get back to Al. We're hanging in there, but we do appreciate your calls, notes, and keeping us in your hearts.
xoxoxo
Sharon
Come Wednesday morning, Al was feeling MUCH better, back to his ornery self again. So well, in fact, that he hoofed it from the hospital over to the Cancer Center -- carrying his overnight bag and a pillowcase full of sheets -- for his radiation instead of having me pick him up to take him!!!
Had his radiation, we had a good lunch, and he drove himself out to Lowe's to 'see the guys'. Had a nice visit with Ed when he got home, and we watched a movie.
This morning, he work up nauseous again, and has yet to get past it. We're working on an anti-nausea cocktail -- may be too soon to say, but it looks like a combo of Phenergan with Pepcid may be the solution (thanks, Vic!) -- and he's working on some 7-Up and chicken noodle soup. He'll have radiation again tomorrow, then he's done til Monday, when he'll have both chemo and radiation.
The doc pulled the antibiotics, and is having blood drawn every day. This morning's result? "Drink more fluids". Hard to do when you lose them right away!!! Poor guy! I just hate not having any way to make it all feel better.
He also prescribed a steroid to be taken the day before, the day of, and the day after chemo, in order to elminate allergic reactions.
Al's been quite busy when he feels halfway decent to look out for MY well being -- pushing me to head to bed, or take a nap, or go to the Mall just to get out of the house. But I hate being away from him more than necessary; during the day at work is too long already.
I'm going to call it a night here so I can get back to Al. We're hanging in there, but we do appreciate your calls, notes, and keeping us in your hearts.
xoxoxo
Sharon
Tuesday, June 14, 2005
Update on Al #20 something
Let's see -- so much happens around here in a couple of days!!!
Al had his IV antibiotics on Monday morning as expected. They pulled lab work at the hospital -- standard procedure -- so he didn't have to have more before chemo today. We saw Dr. Beck, who was encouraged at Al's good state of health and ornery state of mind -- for as we all know, he's only like that when he feels WELL. Al suggested to me that we lay in a supply of Ensure, as he's just not getting much real food on board. It's hard to have an appetite for regular foods when you really can't taste them!!! He still gets the sweets and sours, though, and we've decided mini chewy Sweet-Tarts may be our new best friend -- the sour helps eliminate the metallic taste in his mouth.
He had the Ethyol and radiation, then saw Dr. Perez-Tamayo, who also gave him a thumbs up. He felt so well, he drove himself home, leaving me at the office til he returned to the hospital for his evening IV.
Unbeknownst to me, he went home and started getting sick! I got a ride home (thanks, Karen!) and took him to the hospital, where he had a 101.6* temp. Got him back home, got some Tylenol and Phenergan on board, and set him up with a couple of ice packs on his neck. He settled down some, and I got him into bed around midnight.
This morning, his temp was below 100* again, but he was very nauseous, and nothing we did helped. He said he finally got some liquid on board, so tried a bowl of oatmeal; then it was time to go to the hospital. He got the IV, and I picked him up and drove him to the Cancer Center, where they got him started on chemo, to be followed by NO Ethyol (as we've decided it's just making him more nauseous and feverish) and radiation. About an hour into his chemo, I got a call saying they thought he was having an allergic reaction and had called an ambulance.
By the time I told my boss, got clocked out and ran next door, there were 8-9 (cute, young, buff!!!) paramedics surrounding my husband in his comfy recliner, along with the defibrillator and a gurney. Dr. Beck had evidently been holding up the foot of the recliner, and they then had it propped up, so he was at roughly 40* angle with his feet in the air!!! As you can imagine, this was quite unsettling. OK, I'll be honest, it freaked me out!!! His skin was that awful dead-looking ashen grey -- exactly the same way it looked when he came out of 12 hours of bypass surgery 5 years ago -- and that's not normal for him by any means.
Bless the nurses at the cancer center, about three of them were caring for ME while the paramedics checked out Al. Dr. Beck came over to me just before they took him to the hospital, grabbed me by the shoulders and looked into my eyes, "this looks like just an allergic reaction, but we're going to be sure".
Bless the nurses at the cancer center, about three of them were caring for ME while the paramedics checked out Al. Dr. Beck came over to me just before they took him to the hospital, grabbed me by the shoulders and looked into my eyes, "this looks like just an allergic reaction, but we're going to be sure".
SO, off to the ER, where I called Cleo who came screaming up here (in an hour flat from Wichita) in her new Lexus SUV. They had been concerned his heart might be reacting, but an EKG proved that false. He had a 102.8* temp, and started shaking like a leaf again. So they got a bunch of meds on board, starting cooling him off, and kept him on oxygen while they ruled out everything possible, then shipped him up to telemetry to monitor his vitals. Which just happens to be the same place in the hospital he recovered from his bypass; just a couple of doors down!!!
The end result is that as far as they can tell it was an allergic reaction to Toxal (sp?), which is evidently not that uncommon. Fortunately, they can substitute a synthetic form of the same drug that's less toxic, so he can go forward with his chemo. Dr. Beck was in this evening, and plans to keep Al overnight, releasing him the morning if nothing further goes wrong overnight, and his temp stays down. Al had a good meal, is taking on liquids, and was thrilled when Dr. Beck said they'd remove his catheter!!!
Sounds like he may go forward with the chemo later in the week, ensuring Al's well hydrated first with no temp. They'll definitely resume radiation.
Sooooooo, another bump in this rocky road, and another long day for both of us.
Carol, thanks for running the sheets up to the hospital for us today. Ed, thank you for all the transport; it really makes my life easier!!!
Cleo, thanks for being here when I needed somebody, and the little cruise in the new wheels.
Shelley, thanks for the milk, and bringing Al's things to the hospital. And the laughs -- you always brighten our day!!!
Vic, hope you got all that rock moved!!! I understand the 'sister support network' is in full gear. I called Cleo, who called Alane (both are Al's sisters), who called Vicki, who called Pam (my sisters), who yelled at Shelley to find out what's up already!!! Sorry for the fright, ladies, I'll try to do better if we cross this bridge again!!! By the way, Pam, you can call me any time, you don't have to wait til Friday.
Mom, I swear I'm washing up the Raggedy Ann and Andy sheets tomorrow, so I can pack those and his toiletries in the van for the duration!!! Can't WAIT to see the look on his face when he sees THOSE coming out of the closet.
Amber, happy you had a great trip. We both realize it's going to get a lot worse before it gets better. But Al's spirits are high, and the eternal optimist in both of us is -- fortunately! -- still on duty.
Pam & Doug, hope all is well with you guys. Doug, try not to worry so much -- it does you NO good to worry about something you can't control. (Age will teach you this -- eventually -- if you listen!!!)
Alane, thanks for bringing Lucille over to visit, and regaling us with tales of Molly's new life in the country. It was very encouraging for Al to know she's adjusting so well.
Mikey, thanks for the message. We were at the hospital when you called last night. I tried to reach you by cell this afternoon, but got no answer. Don't you have voice mail on that thing??? So I left a message at home with Linda. Have a safe trip home.
Well, loved ones, I'm headed off to bed, where I will no doubt sleep like a rock!!! Keep in mind no news is usually good news, and thanks for keeping us in your hearts.
xoxoxo
Sharon
Al had his IV antibiotics on Monday morning as expected. They pulled lab work at the hospital -- standard procedure -- so he didn't have to have more before chemo today. We saw Dr. Beck, who was encouraged at Al's good state of health and ornery state of mind -- for as we all know, he's only like that when he feels WELL. Al suggested to me that we lay in a supply of Ensure, as he's just not getting much real food on board. It's hard to have an appetite for regular foods when you really can't taste them!!! He still gets the sweets and sours, though, and we've decided mini chewy Sweet-Tarts may be our new best friend -- the sour helps eliminate the metallic taste in his mouth.
He had the Ethyol and radiation, then saw Dr. Perez-Tamayo, who also gave him a thumbs up. He felt so well, he drove himself home, leaving me at the office til he returned to the hospital for his evening IV.
Unbeknownst to me, he went home and started getting sick! I got a ride home (thanks, Karen!) and took him to the hospital, where he had a 101.6* temp. Got him back home, got some Tylenol and Phenergan on board, and set him up with a couple of ice packs on his neck. He settled down some, and I got him into bed around midnight.
This morning, his temp was below 100* again, but he was very nauseous, and nothing we did helped. He said he finally got some liquid on board, so tried a bowl of oatmeal; then it was time to go to the hospital. He got the IV, and I picked him up and drove him to the Cancer Center, where they got him started on chemo, to be followed by NO Ethyol (as we've decided it's just making him more nauseous and feverish) and radiation. About an hour into his chemo, I got a call saying they thought he was having an allergic reaction and had called an ambulance.
By the time I told my boss, got clocked out and ran next door, there were 8-9 (cute, young, buff!!!) paramedics surrounding my husband in his comfy recliner, along with the defibrillator and a gurney. Dr. Beck had evidently been holding up the foot of the recliner, and they then had it propped up, so he was at roughly 40* angle with his feet in the air!!! As you can imagine, this was quite unsettling. OK, I'll be honest, it freaked me out!!! His skin was that awful dead-looking ashen grey -- exactly the same way it looked when he came out of 12 hours of bypass surgery 5 years ago -- and that's not normal for him by any means.
Bless the nurses at the cancer center, about three of them were caring for ME while the paramedics checked out Al. Dr. Beck came over to me just before they took him to the hospital, grabbed me by the shoulders and looked into my eyes, "this looks like just an allergic reaction, but we're going to be sure".
Bless the nurses at the cancer center, about three of them were caring for ME while the paramedics checked out Al. Dr. Beck came over to me just before they took him to the hospital, grabbed me by the shoulders and looked into my eyes, "this looks like just an allergic reaction, but we're going to be sure".
SO, off to the ER, where I called Cleo who came screaming up here (in an hour flat from Wichita) in her new Lexus SUV. They had been concerned his heart might be reacting, but an EKG proved that false. He had a 102.8* temp, and started shaking like a leaf again. So they got a bunch of meds on board, starting cooling him off, and kept him on oxygen while they ruled out everything possible, then shipped him up to telemetry to monitor his vitals. Which just happens to be the same place in the hospital he recovered from his bypass; just a couple of doors down!!!
The end result is that as far as they can tell it was an allergic reaction to Toxal (sp?), which is evidently not that uncommon. Fortunately, they can substitute a synthetic form of the same drug that's less toxic, so he can go forward with his chemo. Dr. Beck was in this evening, and plans to keep Al overnight, releasing him the morning if nothing further goes wrong overnight, and his temp stays down. Al had a good meal, is taking on liquids, and was thrilled when Dr. Beck said they'd remove his catheter!!!
Sounds like he may go forward with the chemo later in the week, ensuring Al's well hydrated first with no temp. They'll definitely resume radiation.
Sooooooo, another bump in this rocky road, and another long day for both of us.
Carol, thanks for running the sheets up to the hospital for us today. Ed, thank you for all the transport; it really makes my life easier!!!
Cleo, thanks for being here when I needed somebody, and the little cruise in the new wheels.
Shelley, thanks for the milk, and bringing Al's things to the hospital. And the laughs -- you always brighten our day!!!
Vic, hope you got all that rock moved!!! I understand the 'sister support network' is in full gear. I called Cleo, who called Alane (both are Al's sisters), who called Vicki, who called Pam (my sisters), who yelled at Shelley to find out what's up already!!! Sorry for the fright, ladies, I'll try to do better if we cross this bridge again!!! By the way, Pam, you can call me any time, you don't have to wait til Friday.
Mom, I swear I'm washing up the Raggedy Ann and Andy sheets tomorrow, so I can pack those and his toiletries in the van for the duration!!! Can't WAIT to see the look on his face when he sees THOSE coming out of the closet.
Amber, happy you had a great trip. We both realize it's going to get a lot worse before it gets better. But Al's spirits are high, and the eternal optimist in both of us is -- fortunately! -- still on duty.
Pam & Doug, hope all is well with you guys. Doug, try not to worry so much -- it does you NO good to worry about something you can't control. (Age will teach you this -- eventually -- if you listen!!!)
Alane, thanks for bringing Lucille over to visit, and regaling us with tales of Molly's new life in the country. It was very encouraging for Al to know she's adjusting so well.
Mikey, thanks for the message. We were at the hospital when you called last night. I tried to reach you by cell this afternoon, but got no answer. Don't you have voice mail on that thing??? So I left a message at home with Linda. Have a safe trip home.
Well, loved ones, I'm headed off to bed, where I will no doubt sleep like a rock!!! Keep in mind no news is usually good news, and thanks for keeping us in your hearts.
xoxoxo
Sharon
Sunday, June 12, 2005
Update on Al #20
Sorry to be so long in sending an update; in the future, consider "no news is good news". Mostly, I've just been too pooped to peck out a message.
Al was pleased that they picked up his radiation treatments WHILE he was in the hospital. Hospital protocol is that if an inpatient needs to go somewhere, he must be transferred by ambulance. You have to understand that the hospital is exactly across the street and two doors down from the cancer center!!! Nuts!!! They've held the Ethyol to try to determine if that's the problem, and had him on IV antibiotics as well as an oral antibiotic for the duration of his stay.
He left the hospital on Friday about 11:30, we went over for radiation -- which made him nauseous WITHOUT the Ethyol, a point Al had made to Dr. Beck -- and came home. I then proceeded to tear down and move the daybed -- again, with a little help from our favorite neighbor (thanks, Ed!) -- and clean the room nice and sparkly before the hospital bed arrived at 3:00 pm. We both had a little nap and headed back to the hospital for his outpatient IV antibiotics. He'll get those for a week, twice a day, and also has an oral antibiotic he takes twice a day. Another unsettling detail is that he's pretty much hoarse. Says his throat, etc. doesn't hurt, but he barely has a voice. I believe this is an argument for restarting the Ethyol, and that Dr. Beck is planning to resume it this week.
As Dr. Beck pointed out to Al, "this may just be how you feel during treatment", and that's disheartening, but Al's hanging in and more concerned with GETTING the treatment than the side effects. His nausea is more mucous than anything, so now he takes a 'spit cup' with him everywhere he goes. It's rather disgusting, but gets the job done!
We should be getting back on schedule this week, as he'll see both doctors tomorrow. I expect he'll have labs again on Tuesday with chemo on Wednesday. While he goes for antibiotics, I've been going to the office to catch up. Yesterday, we ran a few errands after his treatment, got home around 11:30, and I'm not sure what he did, but I went to bed -- until 4:30!!! So I should be caught up on sleep, but I'm thinking a nap this afternoon might happen since we're up 'early' to get to treatment again!!!
Al hasn't felt strong enough to drive himself anywhere -- and it's only right, since he's sorta nauseous on a regular basis. At least I always know where he is -- I'm usually taking him there!!! I'm going to arrange for the hospital shuttle to get him to the hospital in the mornings if possible, and we'll wing the rest of the details. Hopefully he's figuring out what we've all been telling him -- it'll be easier if he stays hydrated, and take the meds at the first sign of queasiness. The PAs in Dr. Beck's office confirmed what I'd been whining to him about -- that it's easier to prevent the nausea than get rid of it -- so he's taking on Zofran earlier now. Just hope he keeps remembering!!!
Cleo, thanks for the visit and the treats. I picked up more movies last night, as he was feeling REALLY well, and even ate well for supper. We've started rating how he's feeling on a scale of 1-5, one being worst and five being normal, and he gave me a 4 last night, after being a miserable 2 in the morning.
Mom & John, I'm so glad you were able to come up for the dance. John, you can now brag to your buddies that you've slept on a waterbed!!! Thanks so much for the meals and the support while you were here. I just wish Al had felt better during your visit. I did manage to get the kitchen cleaned up some last night -- finally!!! Now I just need to dig through the stuff on the table, and vacuum. And laundry. And weed!!! And sleep some more.
Marcia, thanks for the note. Sorry I haven't responded directly, but my energy level hit rock bottom towards the end of the week, and I'm just trying to get caught back up to start all over again tomorrow!!! I know Alf Alf Alf will really enjoy the movie rentals, as I will, too.
Tom & Vicki, thanks for stopping by. Sorry we had to whisk you out the door to go to the hospital, but it was such fun (for ME at least!) to get caught up. Al's comment in the car was "aren't you glad you don't work THERE any more?!?!?".
Stacie, keep those Lowe's updates coming. Reading the print-out of your message was the highlight of Al's day!!! And please keep the guys up to speed on what's going on here. Somehow, I'm thinking we're going to be making a trip to Lowe's today, just so Al can touch base.
Connie, it's REALLY good to hear from you. I was afraid we'd lost track of you guys for good!!! Hope all is well with you and yours -- how about an e-mail update about YOU?!?!?!?
Alicia, I'm still waiting for an update on Curt. You've been in my heart since his injury.
I'm off to hit the shower and take Al to the hospital. I'll go over and work while he gets treatment, since it takes 1.5-2 hours each time.
Thanks so much for hanging in there with us. Keep us in your hearts.
xoxoxo
Sharon
Al was pleased that they picked up his radiation treatments WHILE he was in the hospital. Hospital protocol is that if an inpatient needs to go somewhere, he must be transferred by ambulance. You have to understand that the hospital is exactly across the street and two doors down from the cancer center!!! Nuts!!! They've held the Ethyol to try to determine if that's the problem, and had him on IV antibiotics as well as an oral antibiotic for the duration of his stay.
He left the hospital on Friday about 11:30, we went over for radiation -- which made him nauseous WITHOUT the Ethyol, a point Al had made to Dr. Beck -- and came home. I then proceeded to tear down and move the daybed -- again, with a little help from our favorite neighbor (thanks, Ed!) -- and clean the room nice and sparkly before the hospital bed arrived at 3:00 pm. We both had a little nap and headed back to the hospital for his outpatient IV antibiotics. He'll get those for a week, twice a day, and also has an oral antibiotic he takes twice a day. Another unsettling detail is that he's pretty much hoarse. Says his throat, etc. doesn't hurt, but he barely has a voice. I believe this is an argument for restarting the Ethyol, and that Dr. Beck is planning to resume it this week.
As Dr. Beck pointed out to Al, "this may just be how you feel during treatment", and that's disheartening, but Al's hanging in and more concerned with GETTING the treatment than the side effects. His nausea is more mucous than anything, so now he takes a 'spit cup' with him everywhere he goes. It's rather disgusting, but gets the job done!
We should be getting back on schedule this week, as he'll see both doctors tomorrow. I expect he'll have labs again on Tuesday with chemo on Wednesday. While he goes for antibiotics, I've been going to the office to catch up. Yesterday, we ran a few errands after his treatment, got home around 11:30, and I'm not sure what he did, but I went to bed -- until 4:30!!! So I should be caught up on sleep, but I'm thinking a nap this afternoon might happen since we're up 'early' to get to treatment again!!!
Al hasn't felt strong enough to drive himself anywhere -- and it's only right, since he's sorta nauseous on a regular basis. At least I always know where he is -- I'm usually taking him there!!! I'm going to arrange for the hospital shuttle to get him to the hospital in the mornings if possible, and we'll wing the rest of the details. Hopefully he's figuring out what we've all been telling him -- it'll be easier if he stays hydrated, and take the meds at the first sign of queasiness. The PAs in Dr. Beck's office confirmed what I'd been whining to him about -- that it's easier to prevent the nausea than get rid of it -- so he's taking on Zofran earlier now. Just hope he keeps remembering!!!
Cleo, thanks for the visit and the treats. I picked up more movies last night, as he was feeling REALLY well, and even ate well for supper. We've started rating how he's feeling on a scale of 1-5, one being worst and five being normal, and he gave me a 4 last night, after being a miserable 2 in the morning.
Mom & John, I'm so glad you were able to come up for the dance. John, you can now brag to your buddies that you've slept on a waterbed!!! Thanks so much for the meals and the support while you were here. I just wish Al had felt better during your visit. I did manage to get the kitchen cleaned up some last night -- finally!!! Now I just need to dig through the stuff on the table, and vacuum. And laundry. And weed!!! And sleep some more.
Marcia, thanks for the note. Sorry I haven't responded directly, but my energy level hit rock bottom towards the end of the week, and I'm just trying to get caught back up to start all over again tomorrow!!! I know Alf Alf Alf will really enjoy the movie rentals, as I will, too.
Tom & Vicki, thanks for stopping by. Sorry we had to whisk you out the door to go to the hospital, but it was such fun (for ME at least!) to get caught up. Al's comment in the car was "aren't you glad you don't work THERE any more?!?!?".
Stacie, keep those Lowe's updates coming. Reading the print-out of your message was the highlight of Al's day!!! And please keep the guys up to speed on what's going on here. Somehow, I'm thinking we're going to be making a trip to Lowe's today, just so Al can touch base.
Connie, it's REALLY good to hear from you. I was afraid we'd lost track of you guys for good!!! Hope all is well with you and yours -- how about an e-mail update about YOU?!?!?!?
Alicia, I'm still waiting for an update on Curt. You've been in my heart since his injury.
I'm off to hit the shower and take Al to the hospital. I'll go over and work while he gets treatment, since it takes 1.5-2 hours each time.
Thanks so much for hanging in there with us. Keep us in your hearts.
xoxoxo
Sharon
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