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

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

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

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

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

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

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

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

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

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

Update on Al #19

Greetings again, from the family waiting room of Salina Regional Health Center!!! Al had his 'regular' radiation treatment yesterday, after which he became nauseous. They gave him a dose of Zofran (anti-nausea med) and we went to lunch. He took me back to work, and by the time I got home around 5 pm, he had a 101* temp and had been nauseous most of the afternoon. Since 101* is our 'magic number' I called Dr. Beck, and we reviewed his symptoms, etc. He said to call if it got to 102*, try to keep him hydrated, and cool him off.

Fortunately it never went over 101*, but was up and down all evening, and he just couldn't keep anything down (even the Phenergan, Rx anti-nausea med). Needless to say it was a rough night, and neither one of us got much sleep.

He was less nauseous this morning, but feeling weak, so I got Ed, our favorite next-door neighbor, to take him by for lab, then on to the Cancer Center. I popped over there around 10:45 am for a break to check in on Al, and found him in an exam room instead of the chemo center. His labs were unsatisfactory -- of most concern, his creatinin (sp?) level was 2 this week, where it was 1 last week -- and he had what they call 'red man syndrome', where his skin was just flushed-looking all over. So they decided to pass on the Ethyol and just give him IV, then radiation.

When I didn't hear back by 2 pm to take him home after treatment, I went back over. His blood pressure had been 80 something over 60 something (unknown to me), and they elected to hold the radiation, cancel this week's chemo, and give him another bag of saline before sending him to be admitted to the hospital. Here at the hospital, he's supposed to be getting IV and oral antibiotics, but we've been here 2 hours, and Al's still just hanging out in his chair! He IS, however, in a familiar space, as they put him in the same room he had last week, so if you wanted to call him or visit, he's in room 237, phone 785-452-7237.

They plan to re-hydrate him really well and flush out one of the antibiotics he got last week (Zocyn), clear up these skin reactions, and get back on track. Frankly, he's got them a bit frustrated; it seems his symptoms don't make a lot of sense with the treatment combination he's been receiving. They're talking about a prescription for Zofran, as he doesn't seem to be able to keep the Phenergan down. Al mentioned this afternoon he thinks part of his nausea may be related to the anti-nausea med they give in his IVs, as he always gets sick AFTER the IV.

In talking this afternoon, Al has suggested we move the stuff out of the spare bedroom and rent a hospital bed for the duration of his treatment. He needs to be able to elevate his head -- which is virtually impossible in our waterbed! -- and he's concerned about ruining the couch that's been his bed most of the past month or so. So I'll be looking into that tomorrow. Guys, I'll probably be calling on your help to move the daybed to the basement!!!

Ed, thanks so much for coming to our rescue this morning. We're so relieved your tests came out 'clean'.

Everybody at SPT, thank you for being so supportive, understanding and accomodating.

Mary, I have all your dishes clean and waiting on my counter to come back to you.

Vicki & Curt, thanks for the encouraging words -- and information -- this afternoon. His port is covered with a soft 4x4 and paper tape instead of that nasty plastic adhesive stuff. You shoulda seen the charge nurse's face when I asked for their wound care specialist!!! =)

Marcia, we need to catch up. I hope everything is OK with you; I worry when I don't hear from you, CHICKIE. =)

Shelley, if I forget to call, I'm thinking the babysitting thing Thursday night is not an option. Hope you make some arrangements; I'm assuming so you can go to Festival Jam.

Cleo, thanks for the follow-up call this morning. I know it does Al good to visit with you.

Alane, we thought we'd hear from you guys this weekend. We'd like to get Molly out to you ASAP, as that garage is pretty warm these days. Hope everything went OK.

Marilyn, Al forgot to thank you for the book the other day. It's not really his 'style', but we're sharing it with others who appreciate the comfort.

Alicia, I've been watching for an update on Curt. How did his surgery go? I've been thinking of you guys a lot the past few days.

Linda & Hugh, I'm sure this e-mail circle will join me in keeping you in our hearts through your latest challenge with Hugh's cancer. I'll expect to be hearing from you late in the week, OK?

Nate, I want to hear/see all about your trip this weekend!!!

OK, I'm out of energy, and my tired mind isn't very clear. I'm going in search of a sandwich and/or chocolate. That should help!!! Please continue to keep us in your hearts.

xoxoxo
Sharon

Update on Al #18

Hallelujah! Good news! Al's home from the hospital.

When I called him this morning, he said the nurses thought his infuse-a-port was now infected. When I got to the hospital, it looked to me as though it was just THOROUGHLY irritated from the tape -- they've had 'sealed' tape coverings over it all week. Fortunately, Dr. Cathcart-Rake (the oncologist who's covering this weekend for Dr. Beck) was just getting to the hospital when I arrived, so I got to be there while he examined Al.

His hives/rash is nearly all gone. There are some spots on his back that look a little nasty, healing from the welts that were there. The opening for his PEGG tube seems to be completely healed or scarred or whatever it's supposed to do -- doesn't look like an incision any more. And he's feeling good, and ready to get back to his regular treatments.

They did send him home with an antibiotic for a week and he's to take Benadryl til the hives are all gone, but he's feeling good, and SO happy to be home. Now we can get back to his 'regular' treatment, and get a routine going on so we're not BOTH so out of sorts.

Keep us in your thoughts.

xoxoxo
Sharon

Update on Al #17

"It just goes to show you, if it isn't one thing, it's another." -- Emily Latella

Well, the good news is that Al's fever broke during the night, and it's been below 101* since Wednesday morning; it was normal overnight and this morning. I noticed last night his back was broken out in hives, so I was sure to bring him all his own 'beauty' products -- soap, shampoo, etc. -- this morning. Especially after talking to his nurse this morning, as it's gotten worse, so I also brought sheets and a blanket I'd washed at home. Al thinks it's the soap he's been using in the shower.

Mid-morning today, his lips got all swelled up, and his temp went back up to 100.4*. (They're usually not too concerned until it's 101* or over.) So they got some anti-allergan products on board, and he went to sleep. Since he was resting, I worked through lunch, went home early, got my nap, and am actually here at the hospital now. Poor guy -- even his shoulders and a good part of his chest are red!!!

He told me yesterday "at least I get a week without chemo and radiation!", so yes, sense of humor is in tact. He's having some issues with his PEGG tube -- it tends to 'blow out' on him when he coughs. He realized they had given him a breathing treatment before his surgery for the PEGG and port insertion, and he didn't cough for a week. So I suggested he talk to the docs about giving him a breathing treatment about once a week so he wouldn't cough at all -- at least until he can get rid of the PEGG tube. He's still threatening to pick up a ball valve at Lowe's and re-engineer the tube!!!

As a response to these updates, I've been asked how I am doing. I'm SO much better than I had been, though a comment here or a commercial there puts me to tears right away. I woke up this morning feeling CALM for a change, so I don't know whether I had a dream I don't remember (I don't remember having ANY dreams since Al's diagnosis) or that my 'life motto' has seeped back into my subconscious; you know, 'don't worry about the things you can't control'. I do get to feeling like I'm burning the candle at both ends, ESPECIALLY with Al in the hospital, but I've managed to keep up -- mostly -- at work, and make up what I don't get done later in the evenings or on the weekend. Everybody there has been SO supportive; I can't imagine an employer or co-workers who would be better through this. Mostly I just feel tired a lot, and a little disconnected from 'real life'. My house looks like a tornado blew through, but I expect to get that back in shape this weekend. And the weeds in the garden are growing nicely; they're easier to pull when they're larger, I've found, and it certainly makes everything look lushly green!!!

Anywho, the docs haven't been in today, so I'm going to head back to Al's room to wait for their arrival. I don't know how much longer they'll keep him here, but he seems comfortable enough (except for that PEGG issue), and has been a very cooperative patient from all reports. He's on the oncology floor, where they're private rooms, so that helps (no Phil!!!). Feel free to stop by; they allow visitors up here 24/7.

John, it really made Al's day when you stopped by to visit.

Amber, thanks so much for the pictures. I couldn't get GMail to function last night, but hope to get Al down here this evening to see them.

Curt & Vic, whenever you'd like to come over, feel free. Watch out for those storms, though!!! We had a doosy today, but it didn't last real long.

Everybody, thanks again for keeping us close to your hearts.

xoxoxo
Sharon

Update on Al #16

Well, here I was all excited to send you some GOOD news for a change, and everything changes.

Al had his follow-up with both Dr. Perez-Tamayo and Dr. Beck's PA this morning. All was well, and we got to see digital images of Al's tumor. It's larger than I had thought -- I would say about the size of my fist or a little smaller, and is lower in the neck than I had envisioned, though attached to his trachea very high, just below his larnyx. Yes, medical family members, I got a copy of his lab reports; you'll have to wait til I can scan them and send them to you. Fortunately, all the numbers look real good. His weight is holding, and everything seemed very good, we were on track for chemo tomorrow, and he had his radiation treatment this morning. Their only concern was to ensure he's getting plenty of liquids on board.

We went to lunch, Al brought me back to work, and went home to rest because he didn't sleep much last night (mostly thanks to Max & Mikey playing tag all around and OVER him!). He had put on his gym shorts with a tank top he wears to treatment, and laid down on the couch. His legs got cold, so he pulled one of the throws over himself. He said the cold just worked its way up his body, and the next thing he knew he was shivering. So he covered up better and curled up, expecting it to pass.

It didn't, so he took his temp, and got 101.5*, and -- fortunately -- called me. I called the doc's, went home to get him, saw the docs, they took a culture, and sent him across the street for admission to the hospital. Evidently the incision from his PEGG tube is infected. They have him iced down (literally) in bed right now, and he's covered with a cooling blanket; they're starting an IV of antibiotics. He'll be here for a day or two til it gets cleared up, and Dr. Beck mentioned that his PEGG may have to be removed. They want to ensure the infection doesn't spread to his infuse-a-port, and I would think having that IV pushing antibiotics through it would help prevent that. Oh, yeah, his temp was 105.3* when we got to his room at the hospital.

The nurse tells me that his PEGG tube may need to be REPLACED; they wouldn't want to remove it with treatment still upcoming.

Both PAs and Dr. Beck assured me that although he won't be having chemo or radiation until the infection clears up (as much as a week), it won't affect his long-term treatment; "this is just a bump in the road". So if you tried to reach us today, now you know why you couldn't.

When I told him I was going to the family lounge to send out an update, Al said to be sure to tell everybody hello for him. He also asked not to have any more herbalist advice or salespeople calling him, so even though he's shivering while he's trying to sleep, he still has his sense of humor.

He's in room 237, which would make the phone number in there 785-452-7237, but please wait until at least late morning tomorrow before calling. He needs to get some rest. I'll be here til he sends me packing, then probably head over to the office.

Carrie, sorry I'm going to miss chatting with you tonight. Can't wait to hear all about the house, and the decorating, and the garden, and your move.

Rick, thanks for handling my downspout situation.

Mikey, sorry we didn't get by to see you yesterday; Al was pooped and went home to rest mid-afternoon. And even though he might not have told you what YOU could do to help him out, I'll tell you -- give him a call once a week or so, just to touch base. We so appreciated being included on Saturday night; it was nice to catch up with everybody again. And I'm dying to see Ledger in person; I didn't realize how long it had been since I'd been to your place!!!

I'll sign off for now. Thanks for keeping us in your hearts.

xoxoxo
Sharon

Update on Al #15

Happy Saturday morning, everybody!!! Looks like a beautiful day out there -- 'abundant' sunshine again, with mild wind and a reasonable temp -- so I'm planning to spend the day in the garden, and the pond REALLY needs cleaning. I'm hoping Al will come out and keep me company, or work on his veggies a bit, or something to get him out of the house and enjoying some fresh air. Supposed to rain over the next several days, so we're going to grab this opportunity today.

Al's had a rough couple of days. He was SO happy after chemo Tuesday not to be feeling poorly. Said he would wake up with a queasy stomach, but as soon as he ate something, he felt fine. Then Thursday he must have been running late for treatment, and failed to eat anything, so he's been nauseous for two days. Unfortunately, we managed to double-dose him on his anti-nausea medication, so he slept about 8 hours straight Thursday, then ate well when he finally woke up.

Last night, he finally decided that it wasn't so much the empty stomach, as delayed side effects from the chemo. A nice visit with his niece, Dr. Amber, and his sister, Cleo, evidently set him straight, and he got plenty of water on board during the afternoon yesterday, and was eating normally and feeling well last evening. I'm letting him sleep in this morning -- he's pleased not to have any treatment for THREE days!!!

We've both been looking forward to this weekend -- he's been SO looking forward to Mikey's party (tonight) and Monday's family BBQ at Shelley's -- and hope to get him feeling 'normal' again by Tuesday's treatments.

On Tuesday, he'll have lab work first thing, get his radiation treatment, then see the PA. As long as his blood work is stable, he'll have chemo again on Wednesday. And I'm pretty sure he'll heed everybody's advice to make sure he has SOMETHING in his stomach before any treatment from now on.

Vicki, though you'd enjoy knowing he credits you with convincing him to have the PEG tube installed. When we met with the dietitian, she didn't even notice he had it, and was launching into her spiel about why he should consider it. Our Al just lifts up his shirt and flashes her the line!!! She was so excited!!! When we talked about it, she asked him what convinced him to do it, and he told her your stories of oncology patients you've treated made him decide sooner would be better than later. He also told her that he didn't think he could have tolerated it AFTER he was feeling punk -- that it felt like he'd been doing 1000 situps every morning since he had it installed!!! It must be healing -- and we're getting used to it -- as he's not 'guarding' it so much.

Pam & Bob, I'm so glad your vacation has gone well after its rocky start. Can't wait to see the pics you bring back from your trip with THE KID.

EVERYBODY, when you see or talk with Al, we refer to that 'feeding tube' as the PEG tube. We tend to equate 'feeding tube' as something you have to choose when you're dying. PEG tube makes it sound more like a treatment option. Also, please don't talk to Al about a tracheostomy or those voice box things. Seems to be one of his biggest fears, and they've told us the trach is an absolute last-ditch thing for him, as they'd have to cut right through his tumor to do that.

Randy, thanks for calling Thursday. We know you're busy, and appreciate you thinking about us. I'm sorry Al wasn't feeling up to visiting with you.

We really DO like to hear from you all, whether by e-mail, on the phone, or with a card. I tell people that if healing is ruled by majority, with all the prayers and good wishes, Al should be 100% in no time!!! Our new neighbor across the street sent over a basket with cookies, movie passes and DQ gift certificates. Evidently, everybody's concerned that we go to the movies!!! I'm thinking I'm about due for a chick flick outing with some girlfriends, and assure you that Al and I will be seeing the newest Star Wars release whenever he feels like going.

Well, I've taken up enough time on the computer this morning -- and your time reading this tome!!! Hope each of you gets a sunshiny day today!!!

xoxoxo
Sharon

Update on Al #14

Hi all!!! Seems like forever since I last sent an update, yet it's only been a few days.

Al was still in a bad mood Saturday, which was only made worse when we left the hospital -- the PEG tube was leaking. Being the inventive guy that he is, he managed to jenny-rig it til Monday, when the doc's office told us to go back to the hospital for a new cap. Replaced on Monday, no more leaks. YEAH!!!

He was pretty sore and miserable from the incision site, so he pretty much vegged out this weekend. Finally turned on the A/C, so we're getting good rest and he's more comfortable.

Monday seemed like an endless stream of appointments, though we only saw the chemo counselor and had his 'v-sim' for radiation. The chemo counselor spent about an hour telling us all the awful things about the chemicals they'll be using -- and all the other chemicals they're going to use so that won't happen. Then she had Al sign a consent form to allow them to do it!!! =)

I hadn't planned to go with him to the v-sim, but he had other ideas. They actually let me go back in the room with him, so I got to see his 'Freddie Krueger' mask (it really does kinda look like that!), and the equipment they'll use to radiate him. It's scarier to imagine than it is in real life; it's rather kewl in person!!!

Today he had his first treatment of both chemo and radiation, and I'm happy to say it went very smoothly. The only effect he's feeling is a sort of dry mouth, which he said was from the chemo because he felt it before the radiation. He seems to be a bundle of energy and is very ornery -- you know, more his normal self. Let's just hope it lasts.

We're off to our office BBQ send-off of one of the PTs who's leaving at the end of the week. Should be fun, at the home of my boss.

Kroeger, I need your home e-mail address -- you know I don't remember anything unless I write it down!!! =) The way I remembered it, the messages get bounced back to me.

Ed, REALLY, we didn't name the cancer Walter because of you. Until yesterday, we'd sort of forgotten your first name was Walter!!! I think I mentioned, I got it from the movie -- On Golden Pond -- as in the fish who reminds Henry Fonda of his brother-in-law, because "he's a mean, nasty, rotten sonofabitch!"

Rich, I meant to call you. Would you rather I drop off the laptop, or do you want to pick it up? Pick one.

Well, I'd better get going. We're looking forward to a nice evening.

xoxoxo
Sharon

Update on Al #13

Happy Friday, friends and family!!!

FYI -- Al had the PEGG tube inserted this morning, followed by the port-a-cath. He was NOT the least bit happy when Dr. Alsop informed us Al would be staying overnight at the hospital, let me tell you!!! He was even unhappier when he heard he only gets liquids today -- at least he can have his beloved Dr. Pepper. He's STILL not happy, and sent me on my merry little way. Frankly, with the mood he's in, I was happy to take my leave. =)

So I've run some errands that need to be done during business hours, and am going to catch a little nap, then head to the office to make up some time I've been off. And swing back by the hospital to take him something to sleep in. He has his cell phone, and he's at SRHC (785-452-7000) in room 217 if you wanna call him or stop by. Visiting hours are 8:30 am to 8:30 pm.

We watched a fun little video (featuring the OLDEST woman in the world!!!) about care and feeding of a PEGG tube, and they're going to wean him into some nutrition later tonight. Mostly they'll do that to ensure it's in the proper position, and working correctly, but also to 'teach' his stomach to accept liquids from that site.

We're having record-setting heat here in Kansas this week, so I told him to enjoy the A/C and relax. (We haven't turned our A/C on at home yet; commonly don't until well into June.) So I'll be getting the pond cleaned out tomorrow, for sure!!!

Hope all is well in your corner of the world.

xoxoxo
Sharon

Update on Al #12

Hi, all! Sorry it's been so long between updates, but the latest news has taken a little time to digest and settle. Vicki (RN) was generous with her time and knowledge, and accompanied us to both doctors' appointments this week. Then we spent some time over a meal with our 'interpretor' which really helped us understand a little better. (Vic, we forgot to look at the pics today!)

We met with Dr. Claudia Perez-Tamayo, who is the only radiation oncologist in town. While she is planning to be very aggressive in treating Al, we weren't terribly pleased with her. Maybe it's a chick thing, but she wanted to sugar-coat things a bit more than we like, so I had to get a little witchy on her and explain how we work. Give us all the details, the worse case scenario, the scary details; tell us the probabilities of what you expect to take place; then we'll place our hopes above THAT line, work it through, and come out swinging. I'm still trying to figure out who 'Brad' on her staff reminds me of; sorta creepy.

They whisked Al away to start calibrating where the radiation should be aimed. They made him a 'Freddie Krueger' mask and took another CT. This mask covers Al's entire head and BOLTS to the table -- its purpose is to hold his head in proper position during radiation. He'll have to wear it for the duration (15 minutes) of his radiation treatments, which will be 5x/week for 7-8 weeks starting Monday. He's not thrilled about the mask -- makes him feel claustrophobic.

DISCLAIMER: THIS NEXT PARAGRAPH IS A REAL DOWNER!!!

To put it frankly, radiation and chemo either cures this, or the cancer will kill Al (by blocking his trachea, and cutting off his air supply). As we stand, he has about a 50/50 chance for cure. She believes the cancer started higher (just below his vocal cords) and has worked down, which is what improved the odds. She explained that they can't radiate that area of the body without having SOME effects on the esophagus, and highly recommended he have a PEG (feeding) tube installed, whereby he could be funneled nutrition and hydration when it hurt too much to swallow. Understandably, this freaked us BOTH out a little -- especially Al. She also recommended a port-a-cath, which is a device implanted under the skin near the collarbone which allows direct access to a vessel -- they can use that for drawing blood, giving chemo and IVs, and basically anything else they'd need to stick him for. Administering chemo can be damaging to the veins, and he's always been a tough stick, so that one was a no-brainer.

OK, back to your regularly scheduled update!!!

We met with Dr. Larry Beck, the oncologist who will be in charge of chemotherapy, today. We liked him better -- he's a real straight shooter, "you're gonna figure this stuff out somewhere along the line, so you might as well be prepared". He talked about the different drugs, and the various ways they would do everything possible to keep Al as comfortable as possible throughout chemo. His staff is a hoot, so we'll fit right in there. He'll be getting chemo once a week for 6 weeks starting Tuesday. It takes 3-4 hours to administer the chemo.

So it was a couple of rough evenings at the Steponick household, but we had some of those difficult conversations we were needing to have, and we're more back to normal than we've been since his diagnosis -- not even a month ago. Seems like an eternity! He's being very ornery again, and has decided he needs to get this and that and this other thing done around the house while he still feels well enough to do them.

He has to see a dentist tomorrow and have his teeth cleaned very thoroughly. They'll give him a prescription flouride rinse to use, which will protect his teeth during treatment. Otherwise, "they'll break off and fall out".

He's scheduled at the hospital for Friday morning to have the port and the PEG installed, but it'll be with that conscious sedation like they did for the bronchoscopy, so he should be home early to mid-afternoon.

We're meeting with some counselor on Monday to hear all about chemo and home care and I don't know what else. The Cancer Center also has a counselor on board, and I spoke with her for a bit today; she's an excellent resource for benefits and care, so it's good to know who to start with. That woman is WIRED in this town!

I went back to work on Tuesday, but as you can tell, I haven't managed to be there a great deal yet. Fortunately, they've all been fabulous -- about letting me off when I need it, as I need it AND being incredibly supportive and caring. And my co-workers are a considerate group of hug-givers -- even on request!!!

Meanwhile, Al's appetite is real strong (he enjoyed Mary's stuffed pork chops last night), and you'd never know he was sick except most of his beard (of 5 years) is missing, and he has a nasty little cough here and there. Dr. Perez-Tamayo told him NOT to shave (though I don't remember exactly why), so he'll have no problem with complying to that one. And not to mow, so I have to get back into practice of mowing. Fresh air, sunshine and exercise. Whoopie!

Nate, I hope it stops raining soon!!! Or at least gives you a few thunderboomers so you feel at home!!! There are some incredible clouds out my window to the southeast tonight; made me think of you missing the storms. Al says he would have to strangle you if you give up one MINUTE in Germany on his account. Enjoy the experience, send lots of photos, and come home with lots of fun stories to tell us. Shelley has been asking about you; drop her a note already!!! And thanks for the postcard. By the way, gardens and landscapes look much more crisp and incredible when they're wet and/or it's overcast, so get out there and send me some pictures!!!

Pam, thanks for the cake via Shelley!!! She FORCED me to eat a piece in her presence, and it's definitely better than the last one I made -- and not burned, either!!! LOL It's about the only thing that's sounded good since we got home.

Guys, I'm sorry to the people who haven't been getting these updates directly. If you know of anybody else, please don't keep forwarding them; send me the e-mail of the person you're sending it to, so I can add them in.

Mom, I don't have Fosdicks current e-mail; do you? Have a good time in Topeka!!!

Vic, thanks for the card; I treasure the message -- and you. We're so blessed with supportive family and friends!!!

Marcia, hope you're enjoying Texas, and find your parents doing well.

Sunroomers, I'm sorry I'm no help, but I hope things get up and working right real soon. Gotta love MSN!!!

Sorry, all, I'm gonna sign off and hit the hay. Fortunately, sleep has NOT been a problem. Thanks again for all your support -- in person, on the phone, via e-mail & IM, and long distance; it really does help!!!

xoxoxo
Sharon

Update on Al #11

Well, Dorothy said it best: "There's no place like home!" We only wished for magical ruby slippers (instead of 6 hours on a plane), and that all this had only been a dream!!!

Cleo & Don's timing at the airport couldn't have been better yesterday, and we had a nice lunch to catch up after the trip. Then we were treated to Don's gourmet brownies, and a tour of Cleo's beautiful garden. And I now have a home for those too-wild-for-me 'foam flower' roses out front if I don't come up with one in my yard!

Shelley and the Camerons have done a great job of looking out for our home and kitties, thanks so much!!! The 'Chasing Rainbows' Iris are on their second bud of blooms; the white yarrow off the patio has gone NUTS, the wild daisies out front are in full bloom (and spreading to Ed and Carol's front yard!); the Joseph's Coat rose is glorious, and my peonies are blooming! Their scent is overwhelmingly glorious and better than anything you can get at the florist!!! It was a fabulous welcome home gift, as is the beautiful weather. And you know me, after this update and a shower (in my OWN bathroom!), I'm out to the garden.

Shelley also cleaned the things that were bothering me while we were gone, and called with a full update on THE KID last night. Thanks, kiddo!!!

Pamela Ann, I can't BELIEVE you raised a Potter girl who'd never made Potter Chocolate Cake!!! Thanks for the thought; I'm looking forward to trying her first effort later today.

Doug and Julie, thanks for the offers of housing in KC. Looks like we're going to start here, and see where that leads. But I've got those offers in my back pocket if we need them.

Joy, I hope things are looking a little brighter for you this morning. You're in my thoughts.

Carrie, I'm looking forward to an update on your house.

Kim, I'm so sorry we didn't hook up on this trip. I meant to call you on Friday, but didn't get it done. Another time.

Nate, got your postcard. Can't wait to see all your pics from Germany. I have your album here, and hope to whip it up this week. Life intrudes on my best intentions!!!

Tami and Marcia, I can't wait to hear from you again soon. Hope you're having a wonderful visit; wish I were in Texas!!! =)

We also came home to a refrigerator FULL of incredible gourmet food, courtesy of my 'foodie' friend, Mary. Thanks so much, Mary; Al enjoyed enchiladas last night and actually showed some restraint and didn't sample everything you brought.

Al and I had really good conversations Friday and on the plane Saturday about Walter, treatment and care. We toured around the hospital (because we missed the 11:30 shuttle and the next one wasn't til 2:30), and I made a point to meet Diane in Dr. Mathisen's office; she had been out the previous two days, and had been so considerate and caring in making arrangements there, I wanted to thank her in person. Once we got back to the hotel, we snoozed off and on all day, and went over to 99 for a good meal. Spent the rest of the evening packing, resting and doing a little laundry. It was nice to relax together a bit.

Flights were smooth, though Marcia, you would have had a heart attack with our landing in Atlanta. Al thought it was really rough; I'd call it bumpy! Then the pilot comes on with her announcement, and Al comments, "That explains it! Woman driver!!!"

We lazed around last night, and Al visited with Khyle (Jordan's daddy and Randy's son) from the corner, as they've put their house on the market and bought a place in the country. I had a walkabout in the garden, and we turned in early. We both got a good night's sleep -- I think Al's first good sleep in 3-4 weeks -- and awoke feeling refreshed and normal for the first time in a while. If the grass is dry enough, I'll probably mow later.

I hope you all don't mind the photo link. You have to sign in, but they won't send you a bunch of spam or anything. I need to add captions, but the shots of Boston were taken from the 19th story window of Al's hospital room. When we were traveling to Boston, Al complained that he'd be stuck with hospital food while I was touring Boston and eating great seafood. I reminded him I'd be right there at the hospital with him, and he made me promise to tour Boston on his behalf, and bring it back to him in photos. That handful is the extent of the photos I took in Boston! I wanted a closer shot of the MGH sign (on the tall white building), but the Security team nearly tackled me, and told me I couldn't take pictures there!!!

I'd never seen a hospital with a queue of cabs, with the main entrance is just next door to the ER entrance. I hadn't considered the security implications of somebody taking pics of such an area, but after Oklahoma City, it's understandable.

Thanks again for all your caring and support. We'll just be taking on this challenge, day by day, one at a time. We both feel truly blessed to have all of you right here with us, propping us up as we go along.

xoxoxo
Sharon Steponick
Eternal Optimist, still on duty

Update on Al #10

7:15 am: Well, this morning is bittersweet. Fortunately, the oncologist, Dr. Liu, came BACK to the hospital last night in order to consult with us. Like every doctor we've met, he gave us all the information he has available, all the nasty possibilities along with all the good possibilities.

As you know, they were not able to resect Al's trachea; the growth of the tumor is too involved in the trachea to be successful with a resection. I'm thankful Dr. Mathiesen knows the limitations of this procedure, and elected not to try, as he told me they could work on him all day and be unsuccessful, which meant certain death. Reducing the tumor by surgery -- in their experience -- has not improved outcomes like it can with ovarian or cervical cancer, and it puts the patient's body through more trauma; in simple words (theirs), "it's not worth the risk".

Our next step is to check out of MGH (this morning) and go home (tomorrow morning). We'll be bringing all his results home with us to share with a radiologist and oncologist. Dr. Liu kept reassuring us this CAN be cured, but we're going to need a radiologist that will separate tracheal cancer from the treatment of lung cancer or even esophogeal cancer. The treatment (a combination of radiology and chemotherapy, preferably at the same time to achieve positive results) will have to be very specifically focused on this tumor and VERY aggressive if it is to be successful. I'll be on the phone later this morning with Dr. Berquist, and we'll probably be at least CONSULTING at KU Med Center in Kansas City, if not receiving all this treatment there.

Amber, do all the research you can to find us THE GUY back home who has the confidence to admit he's never treated tracheal cancer, but the willingness to accept recommendations from MGH. Better yet, let's have a woman; we're more willing to admit we may not know everything!!!

Al could be treated here at MGH, but we're talking 6-8 weeks of treatments 5 days/week. In addition to the significant financial burden, Dr. Liu stressed that we need to be at home, where our support system exists. After the day we had yesterday, I'm going to say I believe he's correct. I know you're all only a phone call, e-mail or IM away, but we might as well be on the moon. LOL

Luckily, I had been chatting the morning away (imagine that!) in the waiting room with a couple of wonderful ladies from upper New York State (whose husband was getting a liver transplant; keep the faith, Cleo!), so I was able to be soothed -- and hugged -- by some very caring strangers.

Evidently I freaked out my family with yesterday's e-mail, and my youngest nephew Josh made quick arrangements to fly my sister Vicki (the RN) here to Boston, just to be here for me. I love that in a family!!!

I took the next-to-last shuttle back to the hotel instead of spending more time in the hospital. Al was feeling MUCH better by the time he got up to his room, and once he got a Dr. Pepper or two into his system, he was back to his normal ornery self!!! So I left him in the company of his roommate Phil -- feature a smaller, east-coast version of Daddy who sorta looked like an older George Carlin -- who evidently kept him up most of the night, coughing.

Hope and pray now that we can actually get treated at the new Cancer Center in Salina. Maybe one of their new recruits is familiar with trachea cancer.

12:46 pm: Well things look a little brighter. I missed Dr. Mathisen by a few minutes on arrival at MGH this morning (oh, they tell me that also stands for Man's Greatest Hospital!). Al actually admitted to me the oncologist scared him last night, but Dr. M reassured him that they've had good experience with chemotherapy on this type of tumor.

I've already heard back from Dr. Berquist's office, and he's already been working the radiation/chemo angle from home. The consensus is for us to see Dr. Perez-Tamayo right there at home on Monday; she's a radiology oncologist, and well-reknowned in our region. I believe she treated my other sister, Pam, last year. And he has an appointment with the local oncologist, Larry Beck (a good sign???), on Thursday. So nobody's dragging their feet, and Dr. Liu gave us a good list of questions to ask and challenges to present to them.

Vicki, if you want to drive over for one or both of those appointments, that's fine. We'll talk over the weekend.

Beaner, I'm pretty sure it's 'thatothersharon', my nickname on every other site on the web I visit.

Pam, thanks for the long talk last night. It was very therapeutic and cleansing for me -- just what I needed (other than the chocolate milk and pop-tarts!).

Karen, I'll give you a call Sunday. I'd like to hear what Drs. Berquist and Perez-Tomayo have to say on Monday before I come back to the office. Tell Matt I'll bring him cookies for holding down the fort in my absence!!! (Baking cookies is very therapeutic for me.)

Mary, Al's wondering what's going to be in the freezer when he gets home -- he's had a voracious appetite the last 24 hours!!!

Girls, catch you on IM later!!!

So that's it from Boston. We'll be heading back to the hotel in an hour or so then hitting the 99 for a GOOD meal before settling in for the evening.

xoxoxo
Sharon