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

No more chemo. No more radiation.

Though we thought the day would never come, Roger finished his LAST treatment of radiation. No more radiation. No more chemo. It was another day of celebration. The attached photo is of a "graduation" certificate and stuffed bear that all the radiation patients receive after they complete the treatment. There was no fan fare - just this cute bear and certificate sitting on top of Roger's shirt on the chair where he left it outside the radiation room. The bear is sitting in front of all the cards and letters you've sent Roger over the weeks.

Roger had an interesting observation today about the other patients. Apparently everyone was very chatty in the radiation waiting area. Many of the same people we have seen over the past several weeks were there - the man with brain and lung cancer who wears a U of Kentucky hat and his wife; Mrs. Martinez with pancreatic cancer; several women with breast cancer, including the coach of the women's basketball team at Butler (who brought a new Butler hat for the UofK fan). Roger's observation is that everyone wants to know what your cancer is and where you are in your treatment when you are at the oncology center, "why are you here" - EVERYONE asks. Whereas when you're at your general practitioner's office you would NEVER ask anyone "why are you here"...good heavens, imagine the answers you could get...athletes foot, flu, genital warts...all sorts of things you DO NOT want to discuss. Cancer on the other hand, when everyone is experiencing some version of it, is not taboo. There's a fraternity to it. So none of you should ever feel that its a taboo subject with us.

Though the chemo isn't coursing through his veins, its still killing cells. Roger's mouth and throat are raw with open sores. Though the radiation isn't actively beaming through him it is still layering on a cumulative "burn". His skin on his back and chest now has a large radiation rash about the size of a dessert plate. His esophagus continues to swell and continues to make it more difficult to swallow. Happily though - Roger has still avoided the feeding tube. Having said that, he is actually starting to feel a little better. He can't eat with reckless abandon but he can eat a little bit more than he has in days. Its relieving. The attached picture is from last night when Roger felt strong enough to prepare his own dinner - scrambled eggs and mashed potatoes.

We both had a couple difficult days this week (thus the brief delay in writing over the past couple days). My Dad called yesterday to see how we were both doing the description I gave him was that it felt like we were a little frayed around the edges. I'm happy that we are moving into what should be a "good" week if Roger repeats the same process as he did from the first round of chemo.

His blood cell counts should start dropping next week and continue to drop the following week...so we are on high alert for avoiding germs. We know of several people with swine flu and so have become more cautious and generally more aware. Research seems to indicate that you can be contagious for 24 hours before you present any symptoms of the S-flu and then contagious for another 6-7 days after you have the first symptom. We feel a little paranoid but can't afford for Roger to get any infection as his immune system takes a beating.

Our continued love and thanks to all of you for the calls and cards. Thanks for the care packages, soup, movies, Wii games, weekly cards, and all the prayers and good thoughts. I'm confident that all of your support continues to give Roger the added boost to fight this fight.

Love, A&R

A little silliness never hurt anyone

Wow. What a night....and I don't mean that in the good way. Roger woke at 1:30 am choking. He said he felt like he was drowning. It was terrifying for both of us. Before going to bed, he had removed the wedge pillow (literally a pillow shaped like a wedge) he has been sleeping on for the past 6 weeks so that he could try to sleep flat. Dr. B said it was ok to try. Well none of us thought about the fact that Roger's system was still producing saliva/mucosa. As his esophagus swells, the saliva has nowhere to go thus waking to find himself literally choking/drowning on his own saliva. The angle of the wedge pillow helped avoid this situation. It rocked our world for the balance of the night/morning. The wedge pillow is BACK on the bed.

We met with the radiologist this morning, Dr. Liebross. The goal of the meeting was to get "approval" to push off the final four radiation treatments until next week so that Roger's poor system could recover. Sadly, Dr. Liebross did not "approve". Of course he said "its your body and your decision about your health care - however if you are asking me if it would be prudent in the course of your treatment to take a break...no it wouldn't." We discussed the fact that Roger's system appears to be shutting down and the implication of additional radiation treatments. The doctor said that we will still try to avoid the feeding tube (Roger ABSOLUTELY does NOT want the feeding tube) - and if necessary, they will give Roger fluids every day as he needs it. So, after a lively discussion with the doctor, we headed to radiation and Roger started the first of the last 4 radiation treatments. We both realize that Roger may land in-patient in the hospital if we aren't able to manage his hydration/nutrition.


After such a rough night and the knowledge that the coming days are going to continue to be difficult, I decided a little levity (ok, out-right silliness) was necessary. The below pictures are of Roger with two of his girlfriends from the oncology center, Marisichka and Denise. Since I subjected them to the silliness, I figured I had better be willing to do it as well, so that's me in the third picture. Roger tried to protest but gave up when the gals happily put on the glasses and laughed loudly with us (ME!). Maybe some of Roger's juvenile behavior is rubbing off on me.

We're looking forward to better days. I'll keep the glasses handy...just in case. Much love, R & A

The day has been difficult. Despite having fluids today and skipping the radiation treatment, Roger feels badly. We try to rank how he feels compared to the previous day... today he feels somewhere between how he felt Saturday and how he felt Sunday. I can't get him to eat - his mouth is raw with sores, throat is raw with sores, and esophagus hurts to try to swallow. No amount of reasoning seems to work. I managed to get him to drink half a milkshake tonight. I tried making grits and eggs for lunch (he likes both under "normal" non-cancer circumstances)...I was informed after he ate one egg and a little bit of the grits... "those were the WORST grits and eggs that I have ever eaten". After silently contemplating how the grits would look on Roger's head, I merely responded "they are not the world's worst. Nothing tastes good to you now so it doesn't matter what I put in front of you. I will not take it personally, however I recommend that you try to find a different, perhaps slightly more subtle way of expressing your distaste for food" And quietly dumped the plate of food into the garbage next to the previous night's plateful of food that was pushed away.....did I tell you what an interesting journey this whole cancer thing was????

Today the doctors were a little at odds about "letting" Roger skip the radiation treatment today. We told Dr. B that we wanted to skip the last 4 radiation treatments altogether in a hope of avoiding having to have the feeding tube put in. He said we really needed the last 4 treatments but that he would suggest to the radiologist that we put off the final for treatments until next week ~ thus allowing Roger's esophagus to "heal" or recover a little bit for the week...and hopefully avoid the esophagus from swelling shut. The radiologist informed us through his nurse (he was out of the office) that he wanted Roger to go with the radiation as planned. Um, NO. That simply was not going to happen today. Roger didn't have the heart/mind for it, and I was not about to push him into it. We'll revisit the topic tomorrow morning when we meet with the radiologist in person.

The feeding tube is a huge mental block. Roger absolutely does not want it now. Obviously after surgery he'll have to have it. He just doesn't want it now. Can't say that I blame him. However at some point either he has to find a way to endure the pain of eating and EAT or we may end up with the feeding tube. We have 3-4 weeks to go before the surgery and he HAS to stay healthy. Its all easier said than done. He has already lost 8 pounds in about a week's time.

Its really much tougher mentally/emotionally than you could ever predict. Watching someone go through this. All you want to do is figure out a way to make him/her feel better, find a food or drink that will taste good and not hurt him, make it all go away. You watch them fade into unconsciousness during a few moments of stolen rest and you hope that when they wake they'll feel much better....only to be crushed when they wake and feel as bad or worse than when they went to sleep. Meanwhile you still have to reserve the energy to get the rest of life taken care of - go to work, tend to the cats (or whatever your version of cats are), pay the bills, tend to the laundry, blah blah blah. You all have your own various lists. It can be done - don't misunderstand me. Its just like you're wearing an extra 50 pounds on your back that's all. I guess that's one way of getting exercise. :-)

Dr. B assured us this morning that six months from now, we'll look back and say "see that wasn't all that bad." We both laughed and told him he was HIGH...this was the first time we didn't believe what he was saying. Six months from now seems like a million years away...hell, I can't remember what six weeks ago was like.

Keep your positive thoughts coming for Roger. He needs extra doses of encouragement this week - anything to get him to eat and drink. Feel free to call in the afternoon or evening. He seems to be best from 3pm-7pm lately. Thanks as always ~ A

Sunday, a day of rest

We went into the weekend apprehensive, especially falling on the heels of what has proven to be one of our toughest weeks. The weekend fell in step with the prior week. Saturday Roger felt so badly and weak that we were afraid we were going to have to call an ambulance. He wouldn't get out of bed despite my repeated pleading, bargaining, prodding, and even barking (though I really didn't do much of that). After having a milkshake in bed and sleeping until noon, he finally felt like he had enough energy to make it out of bed and down the stairs to his chair. After choking down a little lunch, he felt strong enough to make it to the car and off to the hospital. We went to the oncology floor to get fluids. In by about 1:00 and out by 4:30 - he felt a little better but still felt terrible.

Today, Sunday, was more of the same. He felt marginally better in the morning and was actually awake and functional by 9:00 but faded pretty quickly. Still managed to eat a late breakfast/brunch, and off to the hospital again. In by 2:00 out by 5:30...we've had some long days from that perspective. The time during which Roger gets fluids is good for him as he's able to sleep pretty soundly for 2-3 hours once he is hooked to the IV. I'm able to use the time to do work, email, & go through bills.

Tomorrow we meet with Dr. Birhiray first thing in the morning and Roger will then have more IV fluids & drugs. We have a long list of questions for Dr. B -at the top of the list is 'does Roger ABSOLUTELY need to have these last 4 treatments of radiation this week????' As of this evening, he cannot seem to swallow anything more dense or solid than milkshakes, liquids, or soup. It was a moment of realization and maybe fear that we both hoped would never come. Maybe, it is just a temporary thing today/tomorrow because of the aftermath of chemo rather than just the radiation. Whatever it is, we want to limit it. The prospect of having a feeding tube at this stage is daunting and psychologically a huge blow. We'll find out the pros and cons and will make a decision tomorrow or Tuesday (we meet with the radiologist on Tuesday).

I hope to speak with the genetics counselor early this week as well to try to sort things out.

Roger has been slowly losing weight. The height of this weight at the start of this process was 232. On Friday he was at 227 and today he was around 224. Because he is having trouble swallowing, we can't seem to get enough calories & protein in him. He gives me the long eye every time I suggest "hey how about a yummy milkshake? chocolate? vanilla? strawberry? caramel? pumpkin? ANYTHING???". Fortunately I can't read minds as I'd probably rather not know what he is thinking when I ask this repeated question. I've got a fridge and freezer full of things that "don't sound good" (according to Roger). I figure if I have enough options, I'm bound to hit on a suggestion that sounds good to him on a random day. Tenacity is what the treatment of cancer is all about - for both the patient and the caregiver. Tenacity and patience if possible.

Keep your fingers crossed for Roger. We need a couple days of him feeling better to boost spirits. ~ A&R

the sound of the bell chiming

"Ring this bell three times well

Its toll to clearly say

My treatments are done

this course is run and

I am on my way"

Ringing the bell in the oncology area signifies the end of a patient's chemo treatment. This is obviously Roger - ringing the bell three times well today, his last day of chemo treatment. It was an emotional moment, he was encircled by loved ones including the fabulous nursing staff who cheered Roger on. The hardest part isn't over but the catalist of all his terrible feeling is done. The chemo wrecking ball will continue to swing devastation on Roger's system for the next several weeks, but at least we won't be putting any more of that nasty stuff into his system.

I'm sure the oncology center had no idea what it was in for as our family and friends descended on them. The picture to the left includes from right to left in the front row is my dad, my mom, Roger's mom, Roger, me, back row from left to right is our friends Joe and Katie, my brother, and Roger's mom's significant other. The moment , though all of 60 seconds, was too special to not be shared.

We had two moments of deja vu today...first in the morning when we met with Dr. Liebross, the radiologist. He could obviously see that Roger was not feeling well and that his energy was gone....that Roger was "gone" for all practical purposes. So this quiet little doctor out of the blue said to Roger, "have you been able to work anything out with those nuns yet?" Remember, Dr. Liebross was the doctor who Roger announced to that he (Roger) would just have to have sex with prostitues if he (Roger) was going to be radioactive from the radiation. The two of them discussed the merits of IU Hospital compared to St. V's hospital. You'll have to go back to the August post for the original story. Anyway it was so out of the blue - so deja vu - that we all ended up laughing. The second deja vu moment was when Marishka the nurse was un-hooking Roger's IV just before he was going to ring the bell. She was taping the port device on his chest and trying to arrange some of the tubing as our family and friends were looking on. Someone asked what she was doing and Roger announced to all "playing with my nipples". Poor Marishka - shaking with laughter just shook her head.

The day wore Roger out - so he slept from 3:00 on. Waking to have dinner and is once again back in bed. We're hoping the days to come are as painless as possible. The realist in us, knows that we have a lot more really bad days ahead of us. We are planning on going to the hospital tomorrow and Sunday to get fluids in an attempt to keep Roger from getting dehydrated. He is NOT drinking enough fluids because it hurts too much when he swallows.

We'll continue to keep you updated on this progress. 4 more treatments of radiation this coming week and then he will officially be done with chemo/radiation. The schedule will then be 3-4 weeks "off" so that Roger's system can try to repair itself. At the end of this period will be the surgery.

I mentioned yesterday that I was going to discuss the conversation with the genetic counselor. I won't go into all the details now but the long and short of it, the test results confirm that his sister Denise has the cancer gene, but Roger doesn't. Everyone - including the doctors and nurses - just don't believe the test results. We'll see what Dr. Birhiray has to say Monday morning.

~ R & A

We're almost there....

I'm not really sure of where to begin today. The week has been complicated, difficult, exhausting, and emotional. Tomorrow promises to be more of the same... a perfect ending to a long tedious week.

As you settle into cancer, you think you'll settle into the reality of it...and maybe you do at some level, but at a much deeper level.... it never really becomes "reality". Somehow you are transported into a different reality, an alter-reality. Highs are exceptionally high, lows are exceptionally low, and the in between tends to numb you. You become more easily overwhelmed by acts of kindness, and equally overwhelmed or angry with moments of pettiness and self-centered behavior.

Roger has had a bad week as you've followed in previous posts. I have also had a bad week. The days aren't long enough to get everything done for the caregiver yet the days are too long to a person suffering through the "poisoning" of chemo. I've "lost" Roger this week. Any human interaction is minimal and most likely growling. You have to remind yourself repeatedly to not take it personally. When we got home from the oncology center today, he spent most of the late afternoon upstairs in bed.

Swallowing is still difficult. We have a new prescription that seems to help with the throat and esophagus swelling. We had a different prescription mentioned previously, Mary's Magic Potion....Roger HATED IT. Thought it tasted disgusting, made faces, whined, stuck his tongue out, etc. As he was experiencing the difficulty in swallowing I tried to nudge him to take some of the MMPotion. The very adult response I received was, "NO. I'm not having any. It tastes terrible. YOU drink some first and then I'll have some if you think its ok."......WWWHHHHAAATTTT????????? My adult response back was "WHAT? ARE YOU SIX YEARS OLD?????!!!!!" He held fast, never budged. The compromise? The new prescription referenced immediately above. Me, drinks some first.....like I'm a negotiating with a six year old. Reeeealllyyyy.

The hiccuping is unrelenting. For those of you out there saying, "so what? what's a couple hiccups?" Try hiccuping non-stop for 48 hours...even when you try to sleep. There is no sleeping, there is no resting, its downright exhausting for both of us.

The good news today, as there has to be good news, right????? The good news is that tomorrow marks the END of chemo. The end!!!! Roger is expected to have another 4 days of radiation + or -. there is a possibly that there may be a few more treatments added depending on how Roger is doing next week. So chemo will be over. Yea!!!! Sadly that does not mean that the aftermath will stop....it will continue for an additional 2-3 weeks. Fortunately we kept a diary of how Roger felt during the first phase; that should help us "predict" the coming events.

As mentioned previously we are very worried about how he will be doing in the next couple weeks due to the radiation. We're not convinced that he'll get all the nutrients he needs. The liquids that he is willing to drink now includes...ICE TEA...and nothing else. Water hurts too much (????). Apple juice hurts too much...everything hurts too much. If I can get him to drink this new prescription, then his throat/esophagus are numbed and he's able to drink/eat more.

The journey today and yesterday included chance encounters with other cancer patients. Everyone is very good about being friendly and civil with one another yet there is always a big pink elephant in the room ("you have cancer? what are you 'in' for?"). You have every age group in the room, every nationality, every socio-economic level. There are husbands and wives, fathers/mothers with their children, friends with friends, and then the random few that are there by themselves. As we were sitting in the radiation area, we started talking to a woman who appeared to be a social worker for the latino community. She was obviously there with a petite woman of Hispanic decent. We've seen the two of them for several days this week. The are an interesting, gentle pair. You can feel and see the great care that the "social worker" gave to the "client/patient". This care washed over the room to any of us sitting there waiting for treatment. They greeted everyone with a smile and good morning. And, cheesy as it sounds, there was almost a soothing aura about the care giver/social worker. As her client was taken back for treatment, I had opportunity to speak with her further (Roger was already being given his radiation). The woman revealed that her client was "blissfully ignorant" due to the language barrier....the patient/client has pancreatic cancer. She was diagnosed 2 days before Patrick Swayze died (I'm not a celebrity monger but offer this as a point of reference). The social worker said they have no idea of how advanced the cancer, and she wasn't positive that the client knew what kind of cancer she had. Back to that concept of blissfully ignorant.... I wonder if you are ever really blissfully ignorant. Anyway it was a moment that made you stop and think and appreciate the life that you have no matter how difficult or challenging or frustrating. Back to that finding and keeping perspective.

Anyway, I'll have more for you tomorrow, Roger's last day of chemo...his bell ringing day. he is quietly snoring next to me. I hate to miss a few moments sleep when I can get them. Tomorrow I will give you an update about Roger's conversation with the Genetic Counselor today...weird.

Love to all. Keep your perspective and hold onto your friends and loved ones. ~ A

Half way through Phase 2 of chemo

Though we are only three days into Phase 2 of chemo, it seems like forever. I guess that's the way it is when you watch someone having to endure something as dreadful as chemo. We know that we are technically halfway through this part of the process... the hard part is that we are nowhere near halfway through all the aftermath that chemo wrecks.

Roger seems to be on fast forward when it comes to all the nasty stuff about chemo. He has NOT been feeling well at all. Its been a rapid decent downhill. The hiccups which returned in the wee hours Monday night/Tuesday morning are ahead of schedule according to our diary of how he felt last time. His system is obviously much more sensitive to the chemicals. He tried taking a new drug last night that is supposed to help stop the hiccups....it didn't work so well. He was awake, uncomfortable and agitated almost every hour on the hour from 1:30 am through the balance of the morning. We couldn't seem to get him comfortable no matter what we tried. It was a trying night. Roger is exhausted. You can see it in his eyes. You can hear it in the deep sighs. Its a little heartbreaking.

The dawn of the day also brought the weight of a renewed fear we've been trying to ignore. Roger is having more and more difficulty swallowing. He is visibly in pain as he tries to swallow whether trying to swallow foods or liquids. He said that water is very difficult to swallow. According to all the research and all the information that the doctors have provided us, "thin" liquids can be difficult for patients to swallow who have an inflamed throat or esophagus. "Thick" liquids are supposed to be easier. So, we may have to try thickening some of the liquids for drinking to see if that will help. Its hard to say whether its the chemo or the radiation that is causing the current difficulty in swallowing. Most likely its the radiation first and the chemo is just accentuating the problem. The daily "game" is trying to now find something that is appealing in taste for Roger that he is able to eat... its not an easy game. The attached photo is the results of my most recent trip to the grocery for really really soft food - every flavor of pudding known to man, canned fruits to puree into milkshakes, gelatin to thicken liquids to drink. We won't win any awards for the most nutritious of foods...but we'll have things that he can hopefully eat and can get a little protein.

The day also included a little excitement thanks to our insurance carrier, Anthem. They denied two of Roger's anti-nausea/anti-vomiting drugs. The pharmacist informed me that our cost without insurance for one drug (TWO whole pills) is $300 and the cost for the other denied drug (30 some odd pills) was a mere $189. Of course, those of you who know me, know that I'm not going to let this go. During the first chemo treatment, the drugs were covered. There was no reason that shouldn't be covered this time. I was prepared to line up calls with the doctor and nurses if necessary to get the drugs covered. 35 minutes of phone calls with Anthem wherein I explained that if they did not cover the drugs, Roger would definitely end up in the hospital...and then Anthem would have to pay for the much more expensive treatment (including the denied drugs) when Roger was admitted to the hospital. Happy ending...drugs were magically covered by Anthem. :-)

Last night ended with a little drama for me. I was in the midst of making "special" brownies for Roger when I hear this cat screeching outside - one of our cats was mixing with a neighbor cat. I rush out to "rescue" our slightly overweight cat (he weighs a slight 25 pounds!). I try to break them up using my foot (I was safely wearing jeans and shoes)...thinking I had them separate I reach down to grab Earl, our cat. He apparently wasn't done "mixing" with the other cat and turned and BIT me!!!! If you didn't already know this... apparently cat's mouths are FULL of germs and bacteria. My hand has turned some lovely shades of blue and has swollen up. I ended up in the doctor's office this afternoon myself...two shots later and some mega oral antibiotics...I should be good as new in a couple weeks. The good doctor informed me that if I had ignored the bite the infection could have spread up my arm and I could have landed in the hospital. Yee haaa. Nothing but wild excitement in the Wethington household.

Today's funny is actually from yesterday (I couldn't update the blog last night as life was a little too complicated). We arrived in the infusion area at the oncology center by mid-morning and were greeted with all the warm smiles and waves from the nursing staff. The drill is that we check in with registration, which in turn puts us into a queue. The patient's name pops up on a computer screen in the nursing area. The next available nurse "claims" the patient and tends to the patient through the balance of the infusion with back-up from the other gals. As you can imagine, the nurses get to know the patients because they come in for multiple treatments or infusions through the course of weeks, months or years. So yesterday, Roger's name came up. Marishka (the first nurse we worked - pictured in an earlier post) came and got us. She was a little busy so she told us to get settled in a chair and then she'd come back to us. Another nurse, Denise, came up to us and said she'd get Roger started and left to get the drugs....funny thing is that several of the other nurses heard this and said "ooooooooooooh, Marishka is going to be maaaddd. I'm telling Marishka." Denise vanished as Marishka looked up and realized what was happening....the next thing we knew, Marishka was back with Roger's drugs in tow. I've always known Roger is pretty special - obviously so does everyone else.

Not sure what tomorrow has in store for us. Hopefully tonight will mean at least 6 hours of uninterrupted sleep. We're missing our sleep. Two more days of chemo - keep your fingers crossed for Roger. Hugs, R & A

Phase 2 of chemo begins

No more anxiousness due to the anticipation of chemo...Roger started phase 2 this morning at 11:00 a.m. The day actually began before that - 9:00 am for blood work, then radiation, then we met with Dr. Birhiray, the oncologist. He seemed very very pleased with Roger's progress and how well Roger is holding up throughout this process. Dr. B attributes it to the fact that Roger was so healthy going into this. Though Roger himself feels pretty puny, his blood counts are coming back up...so Dr. B said to go ahead with chemo (much to Roger's dismay). We talked to the doctor about the genetic test results which allegedly reflect that Roger does NOT have the cancer gene. Dr. B flat out said, "I don't believe it" to which Roger responded, "neither do I". We asked if, on the outside chance, Roger DIDN'T have the genetic mutation could he possibly avoid the surgery (the biggest part of this marathon)...we didn't get the response either of us wanted. "No, he should still have the surgery." Not the answer either of us wanted.



A high point of the morning is that we happened to overlap our visit with the same older gal with the "magic wand" mentioned in an earlier post. This morning we were able to chat a little with her, her husband, and their daughter while we all waited to see Dr. B. They make the trek up from Bloomington, IN for the treatment. Good people. Loads of fun to talk to. The woman has this joy of life that seems to radiate off of her. As we all got settled into our respective areas of the oncology infusion area, I could see her big burly husband dig in her bag and produce the infamous magic wand as mentioned in a previous post. It was absolutely silly and perfectly charming as he waved the wand over his adorable wife and then came to our little corner of the room and waved it over Roger. He didn't worry about looking silly or what anyone would think. He only cared about what his wife thought and she was tickled pink and giggling away. He also wanted to spread good cheer and positive thoughts...which he did mightily. I'm guessing they both must have been late fifties/early sixties. We learned today that its her last day of treatment. She has been fighting ovarian cancer for 5 years -well outliving the "you've got 6-12 mos" from her doctor - further proof there HAS to be something to the power of positive thought! Her energy, cheeriness and general good nature are an absolute inspiration and completely contagious. We were exited to be able to see them again today. The other reason we are excited to be here today is that she'll get to "ring the bell". You see, when each patient finishes their last round of treatment, he or she, reads a plaque on the wall and then rings the bell above it signifying the completion of treatment. Its another one of those magical moments when the room stops and smiles and claps for the patient. We've been here one other time the bell was rung. Its a great moment. It will be a great moment when Roger rings the bell.

Today's cocktail for Roger consisted of seven bags of chemicals/medicines, chemo, loads of anti-nausea and anti-vomitting medicines, potassium, and then general saline. Its a whole bunch of stuff to pump into anyone in a month's time, let a lone 8 hours. Through the course of the day his color faded a little and he ended up sleeping on and off. The numbness in his fingers quickly returned. We're hoping the other symptoms don't return. Time will tell.

The focus this week - getting the nourishment, food and drink, into Roger's system. He's still able to eat but needs to concentrate more as swallowing is getting tougher. We'll try to keep doing an evening walk until his energy is gone.


We've been having fun watching videos recommended and/or loaned to us by many of you. The current series we have been watching is Band of Brothers. Gotta tell you, normally I really don't enjoy war movies/shows...this is the exception. We're both addicted to the series! Set in WWII. Its really well done. We highly recommend (thanks Chris G for the loan).

The schedule for the balance of the week will be daily radiation, and IV fluids & anti-nausea/anti-vomiting drugs at the oncology center. Roger has his pump which is continually flowing the second chemo drug for the next 96 hours. He has an uber fashionable (NOT) FANNY PACK inwhich to carry it. We both have laughed about this new accessory of his. Poor guy. As if the chemo weren't bad enough.. :-)

We'll keep you updated with the treatment process this week. Keep sending those good strong vibes Roger's way.

The day off.

We decided to come down to the boat for the weekend regardless of what the weather may be. Luck happened to be in our corner and Saturday and Sunday have both been beautiful. Chilly but sunny, pleasant. On the trip down here, Roger out of the blue announced "feels good to have a day off". I kinda looked out the corner of my eye and thought to myself, "oh no, the chemo has completely taken his brain...he thinks its a work day and its really Saturday". So, I opted to NOT say what I was thinking and instead turned to look at him through dark sunglasses (you can't tell what I'm thinking as well if you can't see my eyes) with a quizzical "hmmm? what?" To which he replied, "it feels good to have the day off and not have to make the daily trek to the oncology center". WHEW!!!! His brain isn't gone! Maybe mine is.

Roger is a little apprehensive about this week and the potential start of chemo. He still feels poorly, low energy, and generally "flu-y". The scary thing is, if he felt so badly during the last round of chemo when he was more healthy, then this round may be even more difficult. A tough thing for the most invincible of super-heroes to have to deal with. Trying to stay focused on the positive that he handled the chemo and radiation to date better than the doctors ever predicted. Just a little tough to know that you're getting ready to take a beating from the inside out and you're consciously going in for the beating.

We're apprehensive for Monday but at least we know the drill and know that there will be a group of beautiful, warm, loving nurses at the oncology center to greet us and take good care of Roger. The unknown as of this moment is whether or not Roger's system has healed enough for this next round of chemo. The blood test Monday morning will be the indicator. If he is strong enough the process will be: Monday - all day at the oncology center for chemo and radiation. The chemo chemical is cisplatin and will drip for 6-8 hours. Then they will send Roger home with a pump that will slowwwwllllyyyyy pump 5FU (the other chemo drug) into his system over the course of 96 hours. Every day we will go to the oncology center for radiation and for IV fluids including 4-5 drugs to stave off the nausea and potential vomiting.

We both anticipate that getting food and drinks into his system is going to be more challenging because the "crappy" feeling will intensify and his desire to only sleep will intensify thus decreasing his desire to eat or drink anything. I've warned him that I will continue to "nudge" him to eat & drink. I usually get a dirty look from him when I nudge him, to which I respond, "I would rather that you hate me but are HEALTHY than you think I'm the sweetest thing around but you are sick. Its a sacrifice I'm willing to make. I want you HEALTHY." So, I may have to come live with one of you out there by the time this process is over. :-) Kidding! Its really not that bad, and Roger DOES know that every bit of my prodding is grounded in love for him. We're both trying to focus on the BIG PICTURE.

I know I've said previously that its hard to plan for the future - and it still is. However we...I... am toying with the idea of having a fund raiser to benefit the cancer society or cancer research. I can't remember if I've mentioned this before in a previous post. Anyway, my initial thoughts are for sometime in early 2010 maybe February or March or April. Again, I'm just in the initial thought process. All I know is that the number of people I know directly or indirectly with cancer grows daily. We have and have had several friends and family members with cancer of different types - breast cancer, prostate cancer, lung cancer, non-hodgkins lymphoma, and now esophageal cancer. Strangely, I had never really heard of esophageal cancer and now know of TWO co-workers who each have a parent with esophageal, at least 3 different friends of friends, and of course Roger. Too much cancer. Anyway, I'm starting to toss this idea around. Will keep you posted when/if I get the energy to start the ball rolling.

Keep your positive thoughts coming our way. We'll be back in touch soon. Love, A&R

The man in the picture

My darling hubby. You've seen him in many pictures over the past several weeks. The small, actually big difference with the guy in this photo verses the guy in the previous photos is that this guy now just has a tiny bit of peach fuzz for hair. His hair has started to fall out...and though he didn't have much...what little he had, he has had for years. He woke to find patches of hair on his pillow this morning and then found when he rubbed his head or pinch some of the hair...it came out. So, once I got home, we got the trimmers out and found this gorgeous shaped head hiding beneath Roger's hair. I've gotta tell you. This journey, as you all know, has not been the easiest. There have been terrifying moments, painful moments, difficult moments, exhausting moments, and inspired moments. You name it and we've probably felt it at some point. Tonight, cutting Roger's hair off may have to rank in the top 5 of difficult moments for me. He has laughed the whole thing off but I found that I just couldn't. The moment was too real for me. With each swipe of the cutters around his head, it felt like a swipe at my heart.

Now Roger will be the first to say there wasn't much hair that we cut off but nonetheless it was his hair. I know. I know. This is just supposed to be part of our new normal but, wow. I never thought it would be so tough for me. Roger said that if he had had more hair, the process would have bothered him more. So, I guess the silver lining is the fact that he is follically challenged.

:-).

Tomorrow marks the end of Week 4. Time has evaporated. We are on the calendar for chemo treatment on Monday 10/5 at 9:00 am. They will take blood and run labs to see what Roger's counts are first. If the doctor thinks that Roger is strong/healthy enough, then he will start phase 2 (hopefully the last phase) of chemo. He feels less crappy than yesterday but still feels crappy. Life is measured in degrees of crappiness right now (that's a technical term).

I'm not really sure what the weekend has in store for us. I think the weather promises to be very "fall like" with chilly temps and moist air...translation cold and wet. Obviously much depends on how Roger is feeling. Unfortunately we don't really know what his blood counts are. The doctors only test once a week. We'll try to balance being prudent and avoid potential infection with also trying to live life.

As always, one day at a time. I'm thankful for all of our friends and family. I know we've said this before in other posts, but its important that I continue to remind all of you how appreciative we are of your support. Roger also wants me to remind all of you, in his words "Everything will be ok. I'm ok." So straight from the horse's mouth to you.

More pictures here of Roger's glass creations. xxooxx, R&A