Happy belated Thanksgiving!

No turkey-day at home for us. We loaded up the family truckster (how's that for vintage Chevy Chase "Vacation") and headed south for Florida last Wednesday. Some 13 hours later around 1:00 a.m. EARLY Thanksgiving morning, we arrived. Ok, so the drive there and back was a little insane...who drives 13-14 hours straight with minimal stops for bathroom breaks or food???? The answer to that purely academic questions: Roger Wethington. He's a lover of long car trips. Me? I'm a lover of NO car trips. We are in more ways than one, an odd couple without doubt. Our individual oddities are tied together by a passion for life and a passion for each other so it all kinda works its way out.

It was a last-minute decision. Tough to leave family behind on the holiday of feasting but the call to sunshine and the ocean was too great. It was our only "vacation" for the year. Short though it was - it had a restorative affect on both of us. Its amazing to see how relaxed Roger becomes near or on the water. He was more relaxed than I have seen in a very long time. I was able to just slow down for a few days. I'll admit that Thursday evening was a little tough for me as I sat in a chair watching tv but feeling anxious that I had something I needed to be doing. Its been full steam ahead for quite some time....so slowing down to a veritable halt... away from the house, away from all the various to-do lists, etc. was an abrupt and uncomfortable change for me that first evening. Eventually I figured out the vacation groove - just in time to pack up the truckster and head back home. :-) Roger is much better at vacationing than I am. We napped and slept and walked the beach and rode bikes and basically did a whole lotta nothing.

Roger has been doing well for the most part. Unfortunately he still has some pain and some discomfort but he is managing. Energy level is much closer to normal than it has been for months. His hearing is still off a little. Eating is not as "carefree" as it once was. He has to pay attention to what he eats and how much. Certain food items still give him issues but he's learning what to avoid. The newest issue/challenge he has is his cholesterol. He had blood work done a week ago which revealed that his cholesterol and triglycerides are OFF THE CHARTS. I guess normal for cholesterol is supposed to be below 200...our dear Roger has a count of 356!!! And of course, what do you expect? While going through chemo/radiation he lived on eggs, milkshakes, fast food hamburgers...the meals of champions. You feel a little like "damned if you do, damned if you don't". Unfortunately Roger has known that his cholesterol tends to be high but he doesn't like the cholesterol controlling drugs so he stopped taking them pre-cancer. So we get to add this to the list. He needs to go back and see our family doctor and come up with treatment/diet plan going forward.

Mentally - Roger is doing well. Better than most in his position. You can tell periodically that it the whole thing must weigh heavily on his mind. Tonight over dinner (salads for our start on a low cholesterol diet!), I asked him what he wanted for Christmas in the event someone asked for a gift idea. His response was simple and pure..."Life. I just want to be alive. I want to be on the topside of the grass verses the alternative. That's all I want for Christmas"

We meet with the surgeon this Wednesday. We'll put up a new post on the blog after we have spoken with him. Hopefully we'll be able to tell you what the surgery date is going to be.

And the verdict is....there is no verdict

The week has turned out to be more challenging than I ever could have predicted. As you will recall from our earlier post, we were meeting with the surgeon on Tuesday and the oncologist on Wednesday to review last week's tests and determine the timeline for surgery. Sounds easy right? Well, not so much so.

Tuesday afternoon, I left the office to meet Roger at Dr. Freeman's office at 2:15. All should have been fine, right? Um, no. We checked in with the receptionist and she promptly asked for the CD with the films from the PET/Scan. Roger had given me the CD with test films last week after the PETScan. I knew we needed it. I had his file with us - I had the written interpretation of the PETScan....but had unfortunately left the CD version DOWNTOWN in my office. The receptionist immediately scolded us saying "I called you yesterday and specifically told you to bring the CD" to which my rather heated response was "NO you didn't call me! No one called me!" only then did I look over at my sheepish husband as he raised his hand and declared "she called me". She immediately responded "so we have to get a new date for you". I tried to push for them to use the written version of the test results that day so that we could meet with the doctor....no luck. As I felt my blood pressure increase, the thought occurred to me that maybe it would be more effective for me to communicate with this receptionist if I crawled through the scheduling window and sat on her. ??? Sounded reasonable to me. Mr. Don't Worry 'Bout It Roger Wethington merely shrugged at the nurse and declared to both of us...."no big deal. We'll go with the next available day" That new date to meet with the surgeon is December 2. Ok - nothing we could do on Tuesday. Roger came downtown to get the CD and then took it back to the surgeon's office, just in case. Didn't do any good. No earlier date. Still meeting with the surgeon on December 2.

Wednesday went as planned! Yahoo. We met with Dr. Birhiray (no snafus, no mistakes) to review the test results. He was pleased. He explained that he wasn't worried about the abnormal shape of the bad lymph nodes. The fact that the needle biopsies came back with initial results as negative for cancer was good! The chemo and radiation did what they were supposed to do. We explained to Dr. B what happened with Dr. Freeman the day before in hopes that he could pull some strings...talk one doctor to another. Dr. B said he'd call Freeman for us and see if he could get a date for the surgery as he understood our (my) concern for getting the surgery done before year end. Um, yah. No luck. The doctors chatted - but nothing changed - the date for meeting with Freeman for a pre-surgery consult is still Dec 2.

As I mentioned before in an earlier post, we are trying to get the surgery in before the end of the year. We tried shopping for a second or third opinion from some doctor who would say "Roger doesn't need to have the surgery". Unfortunately, not one doctor was willing to say that. So, we know he should have the surgery. The question is when. There are two reasons for having the surgery now: 1) stay on course with the prescribed treatment, and 2) take advantage of the fact that we've paid all of our deductible and all of our out-of-pocket expenses. Despite knowing that...Roger is understandably none too thrilled about the prospect of surgery. So when the date for meeting with Freeman got moved to Dec 2, Roger did a little happy dance. As Roger puts it, he has grown attached to his esophagus - he's had it for 49 years - so he feels like he's losing a friend. :-)

So now you know as much as we do. The good stuff: Roger is his same ol' obnoxiously funny self. Making silly jokes, harassing the cats and harassing me. He's made dinner a couple times, has been working on the house, and has been going back into work. He's back to his affection self. Its really amazing....the old normal feels sssoooooooooo good! It makes me smile even now to think of it.

The holidays? We're driving to Florida for Thanksgiving. Getting the helloutta dodge for a tiny bit and hopefully getting a little sunshine in the process. As we drive back, I anticipate that we'll have to stop at a Christmas tree farm to get a tree - albeit waaaaay too early. As for Christmas itself, well I have a feeling it will be spent with some of the city's finest caregivers in St. Vincent's hospital.

When we have a date for the surgery, we'll let you know. If we don't talk to you before then, have a wonderful Thanksgiving. Eat well, enjoy the company of your friends and family, and be thankful for life. Its a wonderful thing. ~ R&A

Thurs & Fri at the hospital...Tues & Wed more hospital time

Roger had a PET/CT Scan this past Thursday and then Friday had an endoscopic ultrasound. Thursday was uneventful. Friday...Friday the 13th (literally) turned out to be a figurative Friday the 13th also. The backdrop, we had several trials and tribulations trying to get these tests scheduled. Tests were scheduled and unscheduled and rescheduled at least three times. We finally got dates established for this past Thurs 11/12 and Friday 11/13. Only to have a last minute fire drill when I received notice that Roger's procedure on Friday had been erroneously cancelled. Nothing a bunch of emails, a bunch of phone calls and a personal visit to the hospital couldn't fix - though we were on pins and needles until about 11:00...the procedure was scheduled for 3:00.



Friday turned out to be longer than anticipated and even more anxiety-ridden than anticipated. We showed up at the hospital at 2:15. The test was supposed to be at 3:00. They did not take Roger back until 4:00. As he was being taken back to the procedure room, the nurse told me it would be 30 mins for the procedure. I was told once he was in recovery, then they would come get me. 4:30 came and went, 4:45 came and went, 5:00 came and went, 5:15 came and went...my anxiety level increased with each passing 15 minute increment. Finally at 5:30 a nurse came out to tell me that they were just finishing up with Roger. The procedure took longer than expected. Part of the delay was also because one of the necessary pieces of equipment had not been prepared (??!?!?!?) for the procedure. The nurse told me that the doctor would speak to us in the recovery area.

All kinds of crazy things ran through my head. Why the delay Why the delay Why the delay??? What could be taking sooooo long??? I couldn't help but remember (and relive to some degree) over 3 months ago when I was sitting in this same waiting area and the nurse came out to usher me into a private consult room to tell me that the cancer had spread to Roger's lymph nodes. The passing minutes seemed like hours slowly dripping way. There were 2-3 other families also waiting for a loved one. As my anxiety increased, so did the sensitivity of my hearing... I listened intently in the direction of where the recovery area was -hoping to hear a nurse headed my way - only to be distracted by the older couple behind me talking about their ddddaaaawwwwwgggggssss. Dawwgsss???? How about dogs???? Ughhghghghggh ! Why couldn't we all just sit quietly? Its seemed like such a small thing to just sit and be quiet. Fortunately as I thought a scream of frustration my escape my mouth, a nurse came out and called "Wethington".


I found my loopy husband snugged up in blankets in one of the recovery rooms. He was in considerable pain (and has been most of Saturday and a little today) because of the endoscopic procedure after having had radiation so recently...the tissue is very tender. Dr. Al-Haddad came in shortly thereafter to discuss the results of the procedure. He said the esophagus itself looked good and that if he didn't know any better, he never would have known that Roger had radiation to the area. The nodule/tumor was gone from the esophagus. All good things. He took a biopsy of the area and then also took multiple biopsies of the three cancerous lymph nodes. All biopsies were scoped in the operating room and all came back negative for cancer!!! A very good thing. Unfortunately, the doctor didn't stop there. He went on to deflate our balloon slightly when he said "but...." I had to remind myself "breathe in breathe out...focus focus focus". Roger was too loopy from the propafol to actively participate in the conversation.

Apparently, the lymph nodes are still abnormal in size/shape. The doctor had expected them to return to a "normal" shape/size. Sooooo, what does this mean? Well, we're not altogether sure. The preliminary biopsies all showed that the lymph nodes are clear of cancer. We meet with the surgeon on Tuesday in the afternoon and then meet with Dr. Birhiray the oncologist on Wednesday. We'll go in with a list of questions and will do research between now and then.

So the weekend was tougher than expected. We both wanted to be excited and had hopes of going out to dinner Friday night. Unfortunately, Roger was in so much pain and discomfort that he wasn't up for it, and I wasn't up for it because I was trying to process the information the doctor gave us.

Today, Sunday, he still has pain but it is substantially less. He's still a little dehydrated (almost passed out at the hardware store when he stopped there to pick up some things for the house) - but he has learned to pay attention to the "signs" and sit down when the lights start to flash.

So that's where we are as of today. Two steps forward...one step back.

Bring on the good days

This is one of my all time favorite photos of Roger. The three beautiful women he is sitting with are our nieces Sarah, Sammy, and Haley (left to right). It was FREEZING when we took the pictures last May so the girls huddled close to Uncle Roger. Though we all ended up with various degrees of frost bite (OK, a small exaggeration), the day netted some gorgeous photos. We had loads of laughs. It was a good day.

And speaking of good days, we have had several lately which has rejuvenated both of us. Roger has felt GREAT. Just thinking about how good he feels brings a big smile to my face. Makes you forget all the nonsense and trivial things that surrounds you on a daily basis. He still gets winded and tired pretty easily but otherwise feels great. The weekend was eventful at least for us compared to the past several weeks. We went to a birthday party for Roger's Uncle Jim who turned 95! Went to some friends house for delicious dessert, and then spent all of Sunday working on projects - Roger cleaned and vacuumed cars and blew leaves (pictures to follow ). I had the delight of bagging more leaves and those damn Ginkgo smelly seed things. And when we talk about how smelly these are...think the smell of vomit (literally) and you have the smell of these foul things when squished. The other big moment we had - though most of you may scratch your head on this too - was that we actually ate out at a restaurant! In the total time since Roger started treatment, we have eaten out exactly twice including this past Sunday. That was a big change for a couple that ate out several times a week.

I've heard from many of you that we gave you a scare by not posting to the blog more regularly - with that knowledge we are going to try to post a little more frequently though the world may be same ol' same ol' we'll still let you know that everything is ok.

We met with the oncologist yesterday. He was really pleased with how well Roger has been doing. The schedule this week is PET Scan on Thursday morning and another endoscopic ultrasound on Friday afternoon. We are going back to IU/Clarian for both tests since they did the two original tests a couple months ago. In theory the tests will show that the chemo and radiation have reduced if not totally "killed" the tumors. Once we have those tests results - and all is good - then we will meet with the oncologist again, then the surgeon for a pre-surgery meeting, then most-likely a heart stress test to make sure that Roger's heart is strong enough for the surgery, meet with the oncologist one more time, and THEN....have the surgery. So if you're still tracking with me on this process, we anticipate the surgery will be the end of Nov or beginning of Dec. The surgery will definitely be before the end of the year. The exact date still is not known. We will post the date as soon as we have it.

More soon~ A & R

Ditto

I know its been some time since we've posted to the blog. My apologies. I know many of you check in on us via the Internet so as not to be intrusive. I have really wanted to post. The problem is the words wouldn't come (and I've been a little pooped). All I could think was "ditto"....much of what we've been experiencing has been discussed in earlier posts so again, all I could think was DITTO. Roger doesn't feel well...ditto. Roger had a good day.....ditto. Roger then had a bad day....ditto. Roger has no energy...ditto. Roger has a little more energy....ditto. Ditto ditto ditto to all of our previous posts. The past several days have felt like a big rerun of the movie "Groundhog Day" - repeating over and over and over. Unfortunately, I guess that's what the treatment of cancer is all about. Lots of wash rinse and repeat. We've been a little lost in the repetitiveness.

Though Roger hasn't had any chemo or radiation for over 3-4 weeks, he still feels a lot of the effects - exhaustion, discomfort, pain (though significantly less), lack of taste (STILL nothing or very little tastes good). He *is* eating and drinking fluids more normally though by no means is he back to his normal consumption of food. Certain things still hurt or don't taste good at all. The good news is that he is back on solid foods and no longer is reduced to fluids and eggs.

He hasn't verbalized it but the whole process has been very daunting and weighs on him emotionally as it would with any of us. We both thought that he would start to feel much better once the chemo/radiation stopped or at least shortly thereafter. The fact he doesn't feel back to normal or even close ~ that's probably the hardest part for both of us. Its hard to see this normally vibrant, very active guy sitting for days on end in his lazyboy chair with his head in hand dozing off or staring at the television for hours on end. It has been hard on him not being able to do things around the house. I have taken over most of the "boy chores" for the time being.

He is lighter by about 12-15 pounds and much more pale. You can definitely tell that he's not out in the daylight nearly as much as he was earlier this summer. (summer seems like a million years ago) So, this is actually where we are: this week Roger started going into the karting center for a few hours a couple days. He has been able to do small projects but needs to be mindful of how he's feeling. He gets tired and dizzy easily and needs to take periodic breaks. Still having said that...HE'S UP AN ABOUT!!!! All good things and very very good for his emotional well being. He's done some leaf blowing around the house and has started helping with the dishes again. Again all good things. The conversation has picked up again as some of you know first hand. His horrible off-color, politically incorrect jokes have started again. He's back to his "verbal" watching of TV -which makes me crazy when I'm trying to work - i.e. "hey did you see that? you gotta see this..... that's hilarious....can you believe they said that....etc." I've tried to explain the concept of watching TV "quietly". Much to my frustration it falls on deaf ears.

We did not end up dressing up for Halloween. Roger was not feeling up to it. So instead we had a quiet night. We had dinner with family and then lit up the pumpkins, bundled up in blankets in lawn chairs in the front yard, and then set in to wait for trick or treaters with our massive bowl of candy. Our neighbor hood was buzzing with kids and families. There was the constant sound of spooky music and sounds (someone tape recorded a chainsaw!) mixed with children's screams all night. I was soooo excited at the prospects of seeing all the costumes and kids and pets (I love Halloween...my gram and granddad were married on Halloween...TOO COOL!). The excitement started to fade with the passing hours as we got colder and colder and very very few kids (a total of maybe 10 kids total) graced our doorstep. As the night wore on and my enthusiasm faded, Roger noticed that ALL the houses on our street had the lights off... so NO tricker or treaters ventured our way. What a drag. Roger's guys at the karting center were the lucky recipients of our leftover candy. Halloween will have to be somewhere else next year and hopefully with costumes!

We don't have a date for the surgery yet. Dr. Birhiray wanted to wait for 4 weeks after Roger's last radiation treatment for Roger to have another endoscopic ultrasound and PET Scan (these were the original tests that determined the cancer had spread to the lymph nodes). Dr. B wants the tests done to see how the radiation and chemo worked on the tumors. The tests should be scheduled in the next week or two with the surgery shortly following that. We're not in a rush for the surgery - yet, at the same time we are in a rush for the surgery. Basically there are two main reasons: 1) lets get all this bad feeling, loss of exhaustion, life-on-hold stuff DONE and out of the way, and 2) from a practical PURELY PRACTICAL standpoint...we've met our insurance deductible and all of our out of pocket expenses for the year. So, having the surgery before the end of the year is HUGELY important to avoid having our deductible and out of pocket expenses reset to $0 at the start of the new year. We'll keep you posted on the dates.

We had a deja vu moment last night. While watching TV (unfortunately we're still doing a lot of that), there was a commercial that had something to do with a child suggesting to the adult that the adult try eating the food first and then maybe the kid would eat it. I turned to Roger and said, "gee that sounds like you and the Mary's Magic Potion medicine" His response: "what? I think its perfectly reasonable for you to have to take the same medicine you're trying to get me to take..then you could see how nasty it tastes yourself." .......my response......"WHAT????? We have NO 6 year olds in this house. I would expect to hear that from a 6 year old. " Even last night, he still thought it was reasonable to suggest that I take the medicine if he has to. I concede that I'm all about sharing everything with him....but I think "sharing" meds is over the top. Fortunately, he hasn't had to take any more of the MMPotion lately.

We've started walking again in the evenings. Usually just a couple blocks but its nice nonetheless. I'm hoping this little habit sticks with us.

Thanks to everyone - ChrisG, Jamie, Nancy, Lori - for all the soups and food that you have given us over the months. We've still been enjoying the luxury of pulling goodies out of the freezer and fridge. Thank you.

We're anxious to hear what's going on in everyone else's lives. We've had friends say, "well I didn't want to tell you about whats going on with me as it seems so trivial next to what you guys are going through." Pish Posh. We don't feel that way at all!!! Whatever you are going through - good- bad - and the ugly - all is important to us. And also, provides great distraction!

that's all for now. We'll try to write more as we have more info...or at least more interesting Roger-stories to share. I'm sure there will be more classic Roger moments. Plus, I'll get the camera back out and snaps some pics of Roger to post.

No idea of what's in store for the holidays - will keep you posted on that front. I'm still toying with having another impromptu pitch-in party at the house. I'll let you know if Roger seems up to it. Much love to all. a&r

(sorry for any incomplete thoughts, typos, etc. on our posts. I tend to just let the thoughts out without taking the time to go back and edit, proof read, etc.)