Pumpkin time

Ta Daaaaaa. Today marked the first day that Roger has really felt "decent"... he still went in for fluids at the oncology center but said he only took about half the fluids as he didn't feel like he needed it. He ate a little "normal" food (cereal, chicken fingers, roast beef). He drank Gatorade. Silly as it sounds, its downright exciting. He's still not his same old self, but he's better than he has been in quite some time.

With this "decent" feeling came a LITTLE more energy. He even went into work for a while. With this new found energy, I was able to get Roger engaged in carving our pumpkins. We mutually decided on our designs, I drew the designs, and he carved them. Of course, mere everyday knives would not do the trick for Roger...not when there is some whizbang motorized tool he could use. So, out came the dremel tool and the room was buzzing with sawing. We both were pretty tickled with our end results. (doesn't take much to entertain us!)

It feels good to finally have a good day even if it was a short one. We actually went to the grocery together and then grabbed dinner to take home. Dinner won't make it to the hall of fame for nutrition...McDonalds...but at least he ate. Calories are calories at this point. Roger has lost about 12 pounds in the last two weeks.

So many of you have asked what you can do to help us. Honestly your friendship and support is more than we could ever ask for. It inspires us both. It gives us energy and encouragement. you don't have to "do" anything.

R&A

Hear (not here) today....gone tomorrow

One day at a time....today seems to be better than the previous several days. Roger was able to eat some ever nutritious Kentucky Fried Chicken (?!?!?!). Ok, so not the meal of champions but we'll take whatever we can get at this point. We both expect that he's lost more weight but aren't sure of how much. He'll get on the scale tomorrow.

The chemo and radiation continue to wreck havoc on Roger - hearing, tongue, throat, energy level, his blood counts, etc. Hard to believe that this "medicine" which he stopped taking over 2 weeks ago continues to cause issues for Roger. Fortunately, if you can look at the bright side of this process, we have an idea of what to expect since this was Roger's second round of chemo. Roger's hearing is reduced significantly due a ringing that he hears in both ears. This ringing has lead to some "interesting" conversations that remind me of some of the funny conversations I used to have with my Gram who was very hard of hearing. Tonight, we were watching TV and some commercial came on with a couple young guys on it. I don't remember the product or even the gist of the commercial. All I remember is that one of the actors said to the other "That's tight"....Roger heard, "that's kite" and repeated it quizzically..."that's kite? hmmmm, that's kite. Guess I'm a little out of it." I look over at him with the most perplexed "what are you talking about" look only to be stopped when I see him holding his hands up, finger tip to finger tip forming the shape of a kite. Ok, so now the look on my face changes from perplexed to one of hilarity..."no, they didn't say 'that looks KITE'...they said 'that looks TIGHT'...the light bulb went on as I melted into laughter along with Roger. I suggested that he might want to try using his cool new word with the young guys at the office to impress them..."Man that new car is KITE".

So Halloween is this weekend. We are usually down at the boat or at my brother's house for the holiday (Roger likes to terrorize children especially our nieces and nephew). We think we may be home this year. One of the reasons we want to stay home is that a friend of ours is playing in a girl band at a local bar which means we'd get to see her AND we'd get to dress up in a Halloween costume. Which brings me to our newest request...we're looking for ideas for Halloween costumes. The one we are leaning towards - and you KNOW its going to be off color and politically incorrect - is Roman Polanski the director and the 13-yr old girl that was his downfall. See? Totally off color - but sooooo fun. Of course Roger would be dressed as the 13 yr old girl, and I would be Roman Polanski. Riiigggghhhtttt. So, if you want to save us from offending someone or otherwise embarrassing ourselves, you'd better send some costume ideas our way.

We thought we were in for another adventure this weekend as I was experiencing chest pains. It started late Friday afternoon with pain in my chest that radiated to my back. Despite prodding, strong words from my family and friends, I resisted going to the emergency room. I know it was irresponsible especially since the symptoms were very "female heart attack" oriented. I just honestly could NOT stomach the thought of spending hours in the emergency room at the hospital...NO MORE HOSPITAL time for a while. Happily, as you can tell, I was not having a heart attack. I went to my doctor today, got hooked up and plugged into an EKG machine...All looked good. So, my doctor thinks I may have an infection/inflammation of my lung(s) which is causing this pain. I have some anti-inflammatory drugs to see if that will do the trick. If it doesn't then, I get to go in for xrays of my chest. Weeeeeeeeee! The Wethingtons sure do know how to have fun!!

Last thing for the evening. I got a call from the genetic counselor. After doing a second test on Roger, she confirmed that Roger does NOT have the cancer gene which his sister and nephew both have. We were skeptical after the first test, but now the second test confirmed the results. This is good news in that it means Roger does not have a genetic predisposition to colon cancer or other related cancers. The "bad" or rather odd news is the fact that Roger just happened to get cancer of the esophagus almost 2 years after his sister underwent treatment for stomach cancer. Really WEIRD coincidence.

That's it for now. Take care of yourselves. R & A

Sunday, the end of the weekend

The weekend wasn't everything we hoped for....Roger overall - from a "flu-like" feeling felt better, however his esophagus was still messed up and his energy level was GONE. I managed to get one walk out of him Friday evening and that was about it. The balance of the weekend was spent with him in his chair or in bed. He'll chat it up when spoken to, but otherwise is pretty sedate watching tv or dozing.

We've been able to manage his pain (which is pretty intense in the esophagus) on a 72-hour basis. At the end of that 72 hours, he tends to choke more if sleeping, and if awake, tends to have more of an "edge" to him. We know that this is a matter of time for the esophagus to continue to heal from the radiation...we just had hoped that it would have been better, or at least a little, by now. So, until it heals or feels better, he'll continue to use the 72-hour pain killer. You can tell that its wearing on Roger as is the fact that he can't eat just anything. Something sounds good one day and then is horrible to the taste the next. There is absolutely no predicting what he will be ABLE to eat let alone like the taste of. So we continue to experiment and sadly waste more food than any human should. I've taken to freezing some leftovers (if not previously frozen) in hopes of cycling back to something that might sound good at a later date. It honestly seems like a game that we are trying to play with Roger's body and his taste buds in hopes of fooling them. I'd say we are losing at the game.

We did have a pleasant surprise from Roger's cousin Tom & his girlfriend. They sent a massage therapist to the house to give each of us a Swedish massage. It was very extravagant and felt downright decadent but much much appreciated. It was Roger's first "professional" massage...I wonder if that will get me off the hook for massages in the future since I'm just an amateur????

Leaves are continuing to fall (duh, its Fall...right???). Colors are even more brilliant. We have a beautiful ornamental maple in the front yard with the most brilliant red leaves. Our trees continue to hold their leaves while the neighbors' trees have begun to disrobe, shedding their leaves on our lawn! Murphy's law. So, I spent the better part of the afternoon with rake in hand, ipod playing and Earl & Yoda the cats following me around the yard raking and bagging leaves. Mr. R stayed inside and watched the Colts rack up another victory.

Many have asked about the surgery. We still don't have a date. The way things are looking from our estimations, he will be in the hospital over Thanksgiving we think. Again, we don't have an absolute date yet. As soon as I have one, we will post it. We might even, if his blood cell counts improve (this week should be the worst), have another get together here at the house. I promise there will be NO leaf raking - just a get together to rally Roger before the surgery.

Thanks for all the emails, and cards, and calls. You'd be surprised at how much positive impact those gestures have. Thank you!

G'nite. A&R

Its a good day

I got home this evening after work and walked into the courtyard on my way to the back door to be greeted by this charming man. Looking a little puny, and a little rumpled, but just like the guy we all know and love. Roger was up and about albeit for short spurts throughout the day. He said he feels better than the day before - the pain is less and he's able to swallow a little tiny bit better.

He called me late afternoon to share an image too priceless to pass sharing. Now remember, our sense of humor is a little "off" to begin with so hopefully I won't offend anyone...Mid afternoon Roger saw our neighbors across the street out raking their leaves. They are an elderly couple who have adopted us and we've adopted them. Roger decided he'd go out and help them bag their leaves. Two additional neighbors came out of their houses to start raking/bagging leaves as well. Roger said you should have seen the sight (and we're not exaggerating). They were quite the motley crew: an old gal with 1.5 feet, an old guy who suffered a couple strokes and can't move quicker than a shuffle (he had to sit down and watch), another neighbor with one arm (no kidding), and the last neighbor with a bum ankle that she twisted while traveling in Budapest, and then the "robust" guy in the crowd, Roger who just finished chemo and radiation. Roger said it was really laughable. No one was making any big progress in their respective leaf raking attempts. The above pictures are how Roger looked after helping our neighbor bag TWO bags of leaves. He said he knows he's not going to win any leaf bagging awards this fall. I told him he can do them ALL next fall if he wants to make up for it. :-)

As you can probably deduce its a better day today than yesterday and the day before that. You can't possibly imagine how excited I was to see Roger up on his own and not headed to the oncology center or headed to bed. He was laughing and joking a little. He ate and drank a little. It really is a good day. Hopefully this is foreshadowing for a good weekend.

More soon. Love R&A

Progress is measure in tiny steps

I've been thinking on and off throughout the day about what I would post tonight. I often feel like we're saying the same thing over and over. And to some degree, that is what life has become, a lot of the same over and over (kinda like the movie Groundhog Day). Its not entirely fair to say that each day is exactly the same, because it isn't.

The tiny step today: Roger feels a LITTLE better than yesterday. The sore on his tongue is a little less inflamed, the pain in his chest and throat has been dulled slightly, he ate an egg early in the day, half a milkshake midday, and then half a cup of soup for dinner. Of course this isn't anywhere near the amount of nutrients or calories he needs but we are happy to have him eat ANYTHING. Every meal suggestion is greeted with the soon-to-be famous Roger scowl...and every grumpy Roger look is greeted with the soon-to-be famous Angie"don't EVEN say" it scowl back. We're quite the pair with our "looks" at each other. Fortunately I know he doesn't mean anything towards me personally (I know and remember how he used to love my cooking pre-cancer) and he knows that I am making the food/drink suggestions because I love him and want to get him well. I went to the grocer tonight to pick up a couple things...an hour later I return to the house with a couple bags. Roger looked at me quizzically...thinking I was only running out for a couple things. I had to explain that I walked the aisles at the grocery looking for something he might like and might be able to eat.

Roger has been a champ throughout this. I hope that I would have the same courage, strength, tenacity, and grace to get through the treatment like Roger has. Sadly, I don't know that I could endure half as well as him.

Roger had hopes that he would have had enough energy to rake some leaves this afternoon/evening. Unfortunately, the energy still hasn't returned. So, once I got home, I raked and bagged, 10 bags of leaves. It was a beautiful evening for it. Leaves were good and dry...not to mention down-right beautiful with all the different colors. And, the leaves smelled absolutely wonderful - a little musty, a little earthy. The downside of the leaf raking was the damn Ginko tree. If you are not familiar with this tree, let me tell you it has these horrible "fruits" or seed-things that drop in the fall. They are the size of a large marble and splat with a pop when you walk on them and ooze stuff. The smell is...STINKY....foul...horrible, etc. We are going to see if there is a way to "sterilize" the tree to stop the stupid little fruits from falling. You gotta rake these things up on a regular basis or it becomes a HUGE foul mess after a rain. I tortured myself by looking up into the tree to see how many of the little buggers hadn't fallen. I estimate about 40 b'zillion of the damn things clinging to the tree tops filling themselves with the vile Ginko-stinko juice. its not a good thing to see as you realize you are only half way through your raking/bagging for the day. Um, as you can tell, we're not huge Ginko fans.

Roger continues to go in daily for fluids and anti-nausea drugs. We'll get "orders" for the weekend just in case he is feeling puny. If Roger feels up to it, we may go down to the boat to see if the leaves have popped in Louisville. Otherwise, we'll hang here in Indy. We have pumpkins to carve! I hope to get the camera out. Roger is down about 10 pounds and has lots his beard and obviously his hair. The sparkle in his eyes is a little dimmer.

So that's where we are for now. Roger should be feeling a little better tomorrow and Friday and may be up for talking or texting. Feel free to drop him a line to let him know you're thinking of him and cheering him on. As always, thank you thank you. Love, A

Every day is different

Its Monday. It was supposed to be the start of a better week for Roger. Based on how the day progressed, I'm not sure what the balance of the week holds for us.... Roger is in intense pain from his tongue, through his throat all the way down the esophagus. You can see the pain in his eyes, in his body and the way he carries himself, and the fact that he just won't/can't eat much. Thank heavens for the IV fluids at the oncology center and the hospital. This may be what keeps him going for the next several days. Today we had a delay in getting the fluids because Roger's port was blocked due to a clot. It took a couple different attempts to reinsert the needle to the port and then to finally flush the port/vein with a blood thinner. The process is a little unearthing as you realize the nurse is trying to clear a clot which has formed. Its not unusual to happen...just a little scary...and of course Roger does NOT like needles to begin with. Marishka says its always the big burly guys that melt around needles. I know that to be the case with Roger and with my brother Alan. Me? Needles don't phase me in the least.

His tongue is swollen and has sores so its become pretty difficult for him to talk. If he does talk on the phone, its very briefly. He's better with texting for now. His relief is in the form of sleep when he can doze off. We're trying something new for the pain - hopefully it will help. I struggle, as would anyone, watching him flinch and wince with pain especially knowing that Roger has tolerated years of chronic kidney stones without pain killers. You feel lost knowing that you can't possibly do anything other than offer a tender touch, chase prescriptions, fluff or rearrange pillows, give foot rubs, try to find a food or drink that will be palatable...even if only for that given moment...anything to make the pain go away.

Roger's blood counts are starting to drop. The counts are "decent" today but will continue to spiral downward and with them will go any "good" feelings that Roger might have. Its such a brutal process that you go through with chemo and radiation. Hard to believe that my healthy robust lively spirited hubby has transformed into this sleeping giant.

We talked to Dr. Birhiray today. Its good having him and the wonderful, wonderful nurses there to cheer us on. Dr. Birhiray was exceptionally pleased with Roger's progress (even if we don't feel like we've made progress). He said that Roger is so much better than most of the other patients he sees - he said its more the norm for patients to end up in wheel chairs coming into the office due to weakness and also to end up in-patient in the hospital. So we need to clutch onto what the professionals say and focus on their positive view of Roger's progress. In an attempt to help keep Roger hydrated, he will continue to go into the oncology center daily throughout this week and next week as needed for fluids.

We will see Dr. B again in a couple weeks to discuss how Roger is doing and see when the surgery will be officially scheduled. So much to think about...

As we were waiting for Marishka to get Roger's fluids going this afternoon, we glanced around the infusion room. We saw a couple different pairs of people new to the room. After watching and listening to bits of their conversations, we realized today was their first day for chemo. It left us both with mixed emotions. We remember too vividly the first day...the terror, the feeling of being lost, the feeling like you won't ever take a full breath of air again, combined with the emotional struggle to remain "present" with clarity so that you can remember everything the nurses say and layered on top of all that the desire to not become emotional. Thank god for the nurses who help you hold on, help you hear, help you breathe....and generally ooze this sense of caring and love. I tell you, it made such a difference. I just wanted to go over to these rookies (like we're old pros or something...how funny) and tell them, "just hold on and focus on each day, one day at a time - take every hug offered to you, it will give you strength - ask loads of questions and take notes and don't be afraid to say you don't understand, and remember remember remember there is an end to the process...its a marathon and you'll get there."

We know that we are half way through this marathon for Roger. We know he's doing well all things considered. We know that we have the continued love and support of you, our family and friends, to help pull us through this. We can't wait to get to the finish line and celebrate to with all of you.

He's snoring again. Its time for me to join him. All our love, A&R

Its a roller coaster ride

This journey called cancer is a roller coaster ride fraught with every emotion imaginable under the sun. You gotta enjoy the highs while you can because a low will be soon to follow. I offer that as a descriptor but fear that it may be a little melodramatic as today was a good day. Roger felt better than he has for several weeks. And, we didn't need to go to the hospital for fluids. We anticipate that we will be going into the hospital tomorrow for fluids as a precautionary measure. One low part of the roller coaster ride is Roger's energy level. He is good for short spurts of doing something or staying upright. After a couple hours, he's ready for a nap or at least has to sit down. He is easily winded - but at least we know to anticipate it. Its a little unsettling because its just not like Roger to need naps or have to sit down if he gets winded. I have to remind myself that this is temporary.

Today's issues (though much less than previous days) continues to be sores on his tongue, a swollen tongue and pain in the esophagus. He's able to take a couple different medications that help numb the area and kill pain for a short period of time. Roger has found that if he can take at least one of these medications a few minutes before trying to eat, he is able to eat or drink a little. He's still not getting the necessary 5000 calories and not getting the 15-17 units (8 grams per unit) of protein. We anticipate that the he has another handful of days with these symptoms...

Roger is finally sleeping much better. He made this upholstered piece that attaches to the bed and essentially creates a "corner" with an arm rest for him to sleep upright against with 5-6 pillows wedged around him. He said that its much better than trying to sleep in the lazyboy chairs (which we did during the week when he was choking as he slept). Fortunately Roger is so creative and incredibly talented that he was able to whip out this piece which fits with the bed and is hardly noticeable. He is hoping this will work after he has surgery. I think that we may need to rent a hospital bed that can elevate the head or feet of the bed. He rolls his eyes when I make this suggestion. We'll do whatever we need to do.

Speaking of the surgery...we do not have a set date yet for the surgery. Its our expectation that it will be sometime the week of November 5. Since Thanksgiving is a couple weeks later, we anticipate that the surgeon may not want to have a patient with possible needs in the hospital recovering close to the holiday. I'll post the date as soon as we know.

We feel like junior old people...eating early....going to bed early....needing naps....eye sight going....and wrinkles. :-) And speaking of going to bed early. My handsome hubby is snoring in the lazyboy across from me. Its time to nudge him awake and get him up to bed. We need to steal sleep whenever we get a chance.

More soon~ love, A