A bit of a Scare

Al went in for his regular 6-month check-up with his primary care physician. Bos took a look at him -- with his swollen neck and puffy left arm and hand -- and ordered a CT scan. Needless to say, gave us a good scare.

Good news, it's just inflamed lymph nodes. The CT shows no sign of a mass, so they're going to scan him again in a month and see if anything new develops. In the meantime, he's going to try some lymphedema treatment to attempt to decrease these lymph nodes. Benadryl seems to help most so far, so I've been putting him to bed with some of that on board.

What can I say? His body's 'weird' (to quote every doctor he's ever seen!)!!!

xoxoxo
Sharon

Just remember . . .

No news is always good news on this blog!!! Geez, I need to set a calendar reminder to check back here periodically!!!

Lessee, the latest good news is that Al had a CT scan in January, and there was no sign of anything looking like a tumor. Instead of coming back in six months for a re-check -- and since he sees his primary care doctor every six months -- he's not scheduled again until September.

And if that scan comes back clean, he will be discharged from the oncologist!!! WOO-HOO!!! The doctor says that with this type of cancer, if you make it three years without recurrence, you can consider yourself cancer-free.

Come on, September!!!

Still here!!!

High time for another post, wouldn't you say?

I'm having a personal celebration tonight, as this is the second anniversary of Al's last cancer treatment. Dr. Beck tells us that if he can go three years with no cancer detected, he can consider himself 'cured' (whereas 'they' usually say five years).

So . . . two down, one to go.

Al had another bronchoscopy in May, just to take a look around to ensure no new masses. All clear on that front. Followed this month by a CT scan; again all clear. So we've nothing but good news. He's doing quite well from my perspective. I'm not sure if it's the sunny weather that's boosting his spirits, having a new project (namely Mikey's 'flip' house), or that he just decided to stop complaining, but his energy is up and his outlook is far less gloomy.

We might just make it through this after all!!!

Update on Al #44

Well, good news!!! Dr. Alsop did the EGD this morning, and found no big surprises. WHEW!!! We're both so relieved, we've been asleep since we got home!!!

He agreed with Dr. Beck that Al's esophagus has some stricture, and used a couple of tools to dilate the esophagus a bit. (Isn't that what they used to have to do for Uncle Lorran???) We're to call him on Monday and let him know if that helped him some, and if so, he feels that confirms the stricture as being the problem. Also, if need be, they can use ALL the tools to dilate his esophagus fully.

I didn't ask any smart questions, so I've started a list to ask on Monday when I call.

Al's resting pretty comfortably -- like he normall does following conscious sedation -- though he feels a little nauseous. Thanks for reminding me, Vicki, that they've been poking around on that 'gag me' zone.

He was surprised to find that his stomach wasn't empty, even though Al hadn't eaten anything for 12 hours, so he put him on a drug called Reglan to assist emptying his stomach. Said he saw no evidence whatsoever of acid refux or damage to the esophagus.

So we're good to go til the next update!!! Al's next CT scan is scheduled mid-January; I promise I'll send out a new update.

xoxoxo
Sharon

Update on Al #43

Well, I guess I've been a little remiss in updates, since my last one was in June!!!

Al had another CT scan in September, and it came back clear as a bell again. Other than various aches and pains -- which tend to all get attributed to side effects from radiation -- he's been doing well.

He mentioned about a month ago that his throat was kind of sore, and we just figured it was a seasonal allergy or something. Then a couple of weeks ago, I took him to supper and he ordered steak, and I realized he seemed to be working to swallow it. THAT's when he tells me he's been having problems swallowing for about 3 weeks.

So you can bet we beat it to Dr. Beck's (oncologist) door first thing last Monday morning!!! He examined Al and discussed him with his internist, and they agreed on a barium swallow, expecting to find a stricture of his esophagus, which is evidently pretty easily resolved with an outpatient procedure. Well, the barium swallow showed all clear, so tomorrow morning they're doing an EGD which is a scope down his throat, esophagus, and into his stomach to look for scar tissue, masses, whatever.

Needless to say, we're both on pins and needles. I hesitated to share anything until we 'know' something, but thought a heads up would be the best bet. We're off to bed shortly to get up early to the outpatient section of the hospital. I'm actually looking forward to an update on the staff members' lives -- we saw them so regularly for several months, and now it's been a while. How nuts am I???

I'll update you as soon as I know anything definite. Keep us in your hearts.

xoxoxo
Sharon

Update on Al #42 -- aka HALLELUJAH

HALLELUJAH
hal-le-lu-jah or hal-le-lu-iah or al-le-lu-ia
interjection
Definition:
1. used to express praise to God: used to express praise or thanks to God
2. USED TO EXPRESS RELIEF: used to express relief, welcome or gratitude, i.e.
Hallelujah! The cancer is gone!!!

Well, you can choose the definition you're the most comfortable with, but I can't think of another word that better describes how we feel today after seeing Dr. Beck. The PET Scan is clear as a bell, life is good, and we will go on (sorry, I really didn't mean to plant the theme song from the 'Titanic' in all your brains!).

Al will be having quarterly CT scans, then they'll go to semi-annual "for a few years", and then "we'll be rid of you". Laughingly, Dr. Beck admitted that if he never had to treat Al for anything again, he'd be perfectly happy "never to touch you again" -- due to Al's weird reactions to things, and how every treatment seems to go backwards on him!!!

Speaking of weird reactions to things, he's been having a reaction to the dye from the PET Scan, so we visited the ER yesterday morning. They took a look and sent him home with over the counter meds. No better, and Al was completely miserable this morning, so we went back to the ER -- without a shower OR my morning glass of milk, thank you very much!! -- where they treated him for a few hours, and sent him home to rest and recuperate. But we cheated, and went to Dr. Beck's office (only 90 minutes late).

I fear once he's feeling better, we're going to be difficult to live with, as we received a letter last week informing us that we're never going to have to make a mortgage payment again. When we bought the house in the early 80s, we did so under a special program for first-time homeowners. Turns out, the bonds issued that funded that program were paid off recently, and the legalese states that if the mortgage is still outstanding when the bonds are retired, the mortgage is 'forgiven'. The downside is that we will have to pay taxes on the balance in some fashion as income, so I'm just going to put those mortgage payments into savings to pay those (I estimated it in 2005's Turbo Tax), and we should be good to go come April!!!

So, you can bet we bought a Lottery Ticket for Saturday's drawing!!! LOL!!! Haven't checked it yet. If we win, I'm sticking with my plans to rent a tour bus and driver to visit friends all over the country; I'm thinking I'll need to start in Seattle. Al hasn't decided whether he wants to tag along just yet for the full ride, but BOTH Emerald Cities are on our list.

Now that Al's cold is gone, he sounds a lot better. He's been having some problems with his LEFT knee, but it seems to be getting better. He still hates the CPAP, but he's working on it.

I'm good -- I can get into the garden, play in the den and enjoy time with Al when I'm not off at work antagonizing the general public. It's coming along, with a little help from our friends. (BTW, Ed, thanks for pulling up all those little weed trees!!!)

I'm going to log off now, and run around to fetch supplies from the drugstore, etc.

Hope this finds you all safe and not TOO warm!!! Thanks for keeping us in your hearts!!!
xoxoxo
Sharon

Update on Al #41

It's been awhile (six weeks!!) since I've sent an update, and a few things have changed, so thought we were due for one.

I completely forgot to send an update (though I thought I had, really!) after we got the results of his latest CT scan. Sorry about that. The tests show no change, in fact it doesn't even report a tumor, merely a 'fullness' in the neck region. Dr. Beck sees this as a very positive improvement, and Al confessed to me this week he believes the cancer is gone. Now we just need to get rid of the side effects from all that radiation.

Happily, I spoke with one of the PTs in our office, and Al's been seeing her for about a month. In two visits a week, the circumference of his neck has decreased 4 centimeters as a result of her treatment, and it seems to help. They've shown me how to perform the massage of his lymph nodes, so hopefully we can keep some of that fluid reduced with treatment at home.

In our meeting with Dr. Berquist, he confirmed the vocal cord paralysis is a new development, that he expects it to be permanent, and indeed recommended a sleep study. Al did the sleep study on March 31 (and brought home a nasty cold), and we went for follow-up this week. He believes the edema in Al's throat would be decreased with a CPAP machine to relieve his sleep apnea, and we now have a new bed partner. It's surprisingly quiet, and actually pretty easy. Al looks a LOT like an alien -- or maybe a bug! -- in his face mask contraption. Well, it's really more of a huge nose cover with an elastic 'headgear' strap. The downside is that Dr. Berquist expects him to gain maybe 10% in oxygen saturation while he's sleeping (according to the test, he gets about 85% in his sleep), which should help relieve the edema, and provide more oxygen to his muscles, etc. so he feels better during the day.

I'VE adjusted to the CPAP just fine. LOL Al is convinced on a logical level, but is really questioning it on a physical level. He says he feels like it's even harder to breathe in the morning after the machine's been on all night. I remind him it's only been a couple of nights, and both Dr. Berquist and the respiratory therapist said to give it a fair trial, he needs to use it for 2-3 MONTHS to get used to it.

As Nathan can tell you, Al's voice is nearly non-existent at times. This cold has made it worse, and he generally reserves his voice for when he goes to work and HAS to use it. He's increased to about 30 hours a week, and trying to get back up to his regular 40 hours. He's been keeping quite busy at home, throwing himself into the work here at home and in the yard and garden, as well as the garage. He's very dedicated just now to ridding the yard of the fescue that pops in among the bermuda we cultivate.

I'm just plugging away per usual. It's taking more work this spring to get the garden in shape due to the neglect of last season, but we'll get there. You all know I can go on and on and on about the garden, but let's give the glory just now to the 'Miss Kim' WHITE lilac that's blooming like mad just outside the window next to my computer.

Hope all is going well with all of you. Thanks for keeping us in your heart.

xoxoxo
Sharon

Update on Al #40

Hi all!!! Sorry I'm a bit late, but GMail didn't want to work last night, and I was too tired to be patient!!!

The good news is that there is still no sign of tumor via bronchoscopy. That's no change from the last bronch 2-3 months ago.

The bad news -- though Al doesnt' seem fazed by it -- is that his right vocal chord appears to be paralyzed. Dr. Berquist says this is no doubt the result of his radiation treatments. And he expects it's permanent. My only thought was "I'm never going to hear my sweetheart's natural voice again." Al's comment was "why didn't he tell us about this BEFORE now???" He also wonders whether it's always been that way, as he had a freak accident as a toddler that affected his vocal cords. So when we see Dr. Berquist next week, we're going to ask a few more questions than I had the presence of mind for.

Dr. Berquist also commented how much swelling Al has in his throat, and believes this edema would be decreased with a CPAP machine to relieve his sleep apnea. We've done this before, if you'll recall, after his bypass surgery in 2000. This version makes more sense to us both, so we're going forward with it. I think Al's relieved to know this on-again, off-again swelling really ISN'T just in his mind, and more importantly, there's probably something we can do about it.

Now he's anxious to get Dr. Beck to order that PET scan. I'm anxious to see what the CT scan reveals -- we'll have that news on Monday morning. So I'll update you again Monday evening.

Hope all is going well with all of you. We're both looking forward to our annual Valentine tradition tomorrow -- going to the Wichita Garden Show, and spending the day away from home alone together. Thanks for keeping us in your heart.

xoxoxo
Sharon

Update on Al #39

Hey everybody!!! Remember, when it comes to our health, NO news is GOOD news!!!

Al had his latest CT scan yesterday, and I'm happy to say there's no bad news to report. The mass hasn't gotten smaller -- this radiologist reported it at 1.5 centimeters (compared with 1.3 in December) -- but the lymph nodes are looking normal, and there was no mention of a mass near the hyoid bone as report last time. Dr. Beck was concerned, until Al told him that his throat feels swollen off and on, and yesterday was one of the days it felt swollen. The doc said this is not unusual as after effects of his radiation, and confirmed the same when Al's throat is sore, which again is off and on.

He wants to have another CT scan in TWO months (whereas they have been every month), and have Dr. Berquist "take a final look" via bronchoscopy which is scheduled for March 1. But the really GOOD news is he agreed Al could have the PEGG tube removed. Al's ecstatic! It's really the only thing he's complained of on a regular basis in the past month or more. (He mentions the sore throat or swelling, but doesn't really complain about those!) The PEGG has been real awkward since he's gotten more active -- namely at work for the most part. Oh yeah, if all looks good after the bronchoscopy, they'll probably remove the infusion port as well.

So we'll keep hoping for continued improvement, and an easy PEGG removal. He had the choice of going to the doctor's office for removal WITHOUT sedation, but considering the discomfort level he had when it was initially installed, we agreed sedated removal as a hospital outpatient made more sense. Sounds like Tuesday morning, but I need to call Dr. Alsop's office to confirm.

By the way, Al turns 50 on January 16. I'd love for him to be 'showered' with cards -- THIS year especially, after all he's been through. Join in if you'd like, and send them to Al Steponick, 333 Yale Ave, Salina, KS 67401-7369. Thanks!

Meanwhile, I think every 'child' should read this, and every 'parent' should remember it.
Beaner, thanks for sharing the link with me -- it's SO accurate.

If I missed you on our recent self-portrait, check it out here.

Nate, give us a buzz sometime. The phone number I have for you (628-something) doesn't work any more, so I'm thinking you have a Salina number now? BTW, when I drive by and honk, tell Desi it's customary to wave!!! (You ARE on my route to and from work, remember!!!)

Vic, keep me posted next week.

Pam, I have your Christmas photos here. How's Roger doing by now?

John, how was your Christmas? Hope you had a great visit, and that you enjoyed the gift we left you in the freezer!!!

Steph, I really haven't fallen off the planet. Promise.

Chat chicks (you know who you are!!!), we need to organize a visit . . . soon!!! Rainy, what night(s) are you off?

Again, thanks to all of you for your ongoing support. Please continue to keep us in your hearts.
xoxoxo
Sharon

Update on Al #38

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

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

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

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!!!

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

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

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

Update on Al #31

My horoscope for today was:

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

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

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

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