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