Tick tock Tick Tock

We've become clock...well actually calendar watchers. And really the "We" is Me. One of the best ways to "handle" chemo is to diary or journal the experience. You start having the ability to better predict the good days and the bad days. If you hear of anyone getting ready to start chemo I would strongly recommend doing the same. We use a calendar and write down what Roger has eaten and had to drink and then we also write down how he felt - low energy, no energy, vomiting, intestinal issues, etc. And on those really low, crappy days, I pull out the calendar and remind Roger it will only be X more days until the good days start and will point to the calendar as hard fast proof. Its not science but it works for us.

Unfortunately, what you can't predict is the impact of the accumulation of chemo in the body. This will layer an additional complexity in trying to predict the coming good days. The second round of chemo was definitely harder on him than the first round. Again, we try to keep focus on the fact that the bad days, however many there are, will be followed by good days.

This weekend marked the official start of GOOD DAYS!! He felt downright decent in fact to the point where he started to overdo it physically. Which is another one of those paradoxes....when you feel good you want to get out there and "do" stuff...unfortunately when you are as physically puny as Roger, "doing" stuff can quickly kick your butt. Likewise, doing stuff burns calories. So it becomes this vicious circle of wanting to do more, doing too much, and having to play catch up with food, drink, and rest. Nonetheless, its a battle we are happy to endure because it means Roger feels GOOD.

This leads me to the other part of the calendar watching . Roger is supposed to be on this 3 day on chemo/12 day off chemo schedule. This week he got an extra "bi" week....so he is/will be actually off chemo for approximately 19 days. His doctor is out of the office this week on vacation so Roger got a little vacation from chemo. He literally could have skipped he was soooo excited about not getting chemo. He should feel like superman by this coming weekend....provided he doesn't over do it.

We had a moment of levity about this brief "vacation". When I saw the next infusion date was scheduled for the week of August 8, I went back and checked my calendar because the date seemed "off" from the 3 days on/12 days off schedule. Being the rule follower that I am and more importantly one of MANY people who wants to get him better, I immediately checked in with the scheduling nurse in case she had made an error. You see, I thought Roger was supposed to have chemo on 8/3. When Roger realized what I was doing, he looked at me like I had three heads and said, "What are you doing?? Shhhhhhhhhh!! Don't tell them!" I gave a similar look back and said "I understand your motivation and know what you're thinking, however, if the treatment has a protocol of x days on and y days off and that protocol means a greater likelihood of the treatment working then don't you think we should stick to the protocol??? After all, you're not doing this because its fun." A few more looks were exchanged....He still got his week "off" . And honestly, seeing how happy he was/is...I think we will push back on the doctor and see if the treatment will as effective on a three week schedule on an ongoing basis.

Have a great week. We'll post more later.

Um, Boxers or Briefs

I get home this evening to find my darlin' husband down right chirpy. He is definitely on the upswing of feeling better! (just in time for more chemo) So he chirped away about work and various things and then out of the blue said "Boxers or briefs?"....HUH? I sat a little baffled. He knows what I wear. I'm afraid I don't wear either boxers or briefs and I won't be going into any detail of what I do wear! So, I looked at him with a confused look on my face...HUH? He came back with the same question, "Boxers or briefs"? Ok, I'll bite....I offered up with much conviction BOXERS!!! (I do think they are cute even on a skinny mini like Roger). To which he replied with a giggle "NO, not when you have diarrhea" Eeeeeeeeeewwwwwwwwwwwww !!!! I soooooo didn't need to know the details that followed. I know I know you moms and dads out there are immune to this stuff. But, hello NO kids on this end....NOT immune here. I will tell you though, Roger left me in tears with laughter as he proceeded to tell me the story of how he found out BRIEFS are the only way to go when suffering with intestinal issues. So, you all have now been appropriately educated about what to wear when suffering intestinal challenges.

The other amusing story this week involves one of our cats, a chipmunk, and Roger. Roger was sitting outside in our backyard/courtyard early one morning this week eating breakfast. He let our ferocious I mean...FURocious hunter Yoda the cat out to prowl. Roger said the cat hadn't been outside more than 5 minutes when the cat returned to the courtyard with one little chipmunk dangling from his mouth. He walked up proudly to Roger to show off his toy. Now, if I had been home to witness this little show-n-tell there would be a stream of obscenities spewed at Yoda at a somewhat frenzied pitch followed by me chasing Yoda and screaming "put him down". I like to pretend that we all live in harmony. Anyway, I digress. Roger calmly tells Yoda "no" (no obscenities....obviously NOT me) and Yoda drops the chipmunk at Roger's feet. Roger gets up and puts Yoda back in the house. (BAD kitty). Then Roger sits back down with the chipmunk at his feet. Roger then proceeded to tell me that as he sat at the table munching on his breakfast he had his foot gently resting near the chipmunk. He rhythmically tapped his foot up and down lightly on the chipmunk giving him rodent CPR. He said after a few seconds, or maybe a minute, the little critter got up, stumbled around a little and then slowly scurried off. Gotta love my hubby!

So, that's it for today. Its a good day but you could probably figure that out. Roger feels pretty OK especially compared to how he has felt for the past 5-6 days. Intestinal issues still linger but he isn't balled up in a fetal position on the sofa or sitting like a zombie in his chair. I think we are actually going to try to get down to the boat this weekend. Should be a good weekend.

Have a great weekend!! Stay hydrated. Enjoy your people and enjoy life.
Love, A & R

The paradox of cancer

After Roger decided he was going to pursue chemo, I set about researching recipes for foods high in calories and nutrients, rich in anti-oxidants, and some of the infamous "super foods"...and if at all possible tasty to boot. Need I say more than the research continues. Oh, there are plenty recipes for high protein foods and high calorie foods but then you have the challenge of heart friendly AND the additional challenge of not "feeding the cancer". There is a line of thought which believes certain foods, processed foods, sugars, etc which feed cancer. Then you must layer on top the fact Roger thinks he is lactose intolerant. Eating card board, though certainly easier, just isn't an option.

So, we are relatively intelligent people....or so we like to believe. And yet we or ME are still wrestling with this food dilemma. There is this difficult, very fine line between food good for you AND food that is appealing to a cancer patient on chemo. I thought about this in particular this evening when my darling husband expressed interest in a meal - first time in 72 hours where he actually said something sounded "ok" to eat without me nagging, prodding or otherwise trying to encourage some consumption. And WHAT, what did he want? No, not the organic soups I've made. No, not the organic, fortified shepherd's pie. No, not the fortified chicken patties with arugula and rosemary. No, Roger decided he wanted KENTUCKY FRIED CHICKEN. WHAT????? Greasy, fried chicken!!! So, I put the smackdown on my reason and healthy determination and let the overriding need to put some sort of meat on Roger's bones overrule. But, ugh. Kentucky Fried Chicken as your first "real" meal coming out of chemo??? Mine is not to question but instead grab my wallet, my keys, and head to the nearest fast food restaurant of Roger's choosing.

We will still try to counter the fast-food choices with more organic options as Roger's taste will allow. He said he really WANTS to try to eat better. Nothing worse than getting through chemo and find out that you've whacked your cholesterol, etc. So, I roast organic veggies and puree them to use as supplements to various recipes. Sneak those veggies in whenever I can!!

Now, here is the other paradox with cancer/chemo/eating. When I can get Roger to eat home cooked food, I will fortify recipes as much as possible - soy protein, whey protein, calorie enhancers, maple syrup, dried milk, butter milk, yogurt...you get the picture. Anyway, I take a good rich recipe and amp it up with as much extra yum as I can without messing with the taste. Everything sounds ok, right? Now here's the paradox. There are two of us living here. One of us weighs 140 LBS and the other one weighs an amount which shall not be disclosed (you can guess who is who). And of the two of us, guess which one does NOT need to be eating rich, fortified, amped up foods. Um, yep, you guessed it. Me. As if cancer weren't difficult enough there has to be this additional paradox?!?!? Roger's butt gets smaller while Angie's gets larger. Just not right! This whole food thing has become a bit of an obsession for me.

Before Roger was diagnosed with cancer, we were food & drink lovers. Loved to go out to dinner - in fact did it waaaaay too much. Now, its all changed. Socially we would go out and meet friends for drinks/food. Now, there simply is no joy in food and Roger doesn't drink. So, its just very different. Likewise, its very different even trying to grocery shop because you don't know what might appeal to Roger let alone grapple with whether or not its "good for you". I've found myself literally feeling lost at the grocery because the simplest of tasks had suddenly gotten so much more complex. In those moments I find refuge in knowing I can fall back on the grocery staples Little Debbie Oatmeal Pies (a current fav of Roger's), peanut butter cheese crackers, and Sprite. I'm sure I'm on some nutritionist's Most Wanted poster for committing various nutrition felonies.

Today was an "ok" day. Not good, but a little less bad than yesterday. He was weak, puny, nauseous and had periodic vomiting. So, we went to the oncology center for more IV anti-nausea, anti-intestinal issue (translation: diarrhea) drugs, and a bunch of fluids. This evening, Roger seems to be slowly on the mend. Hopefully tomorrow will be much better. I think I've mentioned one of the side effects of this chemo is extreme sensitivity to cold ....thought you could appreciate this picture. Roger is the only guy in Indy on a 95 degree day bundled up under a blanket! The other photo is of Roger and our niece Sarah on our boat over 4th of July weekend.

much love to all. thanks for all the support. A & R

Round 2 - DONE

Its Saturday. Yesterday was the last day of this round of chemo. By my rough estimation Roger should have a total of approximately 12-13 rounds of chemo. So mark this as 2 down! I'm all about milestones and looking forward.


Today is the official start of the really bad days. Roger started to decline yesterday afternoon. Today is a full on crash from the chemo. Intense nausea with vomiting, lack of appetite, extreme fatigue, and pain. On top of all of these side effects, we also have to worry about chronic diarrhea. He is mighty thin....so all of these issues can be lethal if not controlled. Tomorrow should prove to be more of the same. He should slowly climb back out of the chemo hole Mon & Tues of this week. We are hoping the bad days are limited to the weekend and that he is able to enjoy the "down" time between treatments. There is nothing worse than feeling crappy for days on end, then feel better just in time to start chemo all over again.

The other dynamic that occurs throughout all of this is Roger's disposition fades and gets grumpier which causes my disposition to turn chirp-y-er. A combination that doesn't always work....Additionally as Roger eats and drinks less, I become somewhat obsessed reminding him he needs to try to eat/drink something to prevent dehydration and further malnutrition. I'm sure you can anticipate the reception. If looks could kill.... I know its all because he doesn't feel good....and remind myself of the same with the sting of the words or the looks. We both look forward to the good days!

Last week I was talking with Alice, a friend of mine who is a melanoma survivor. We were talking about the cancer experience and how each person handles it differently. She shared with me a story she had seen on TV about a female celebrity with breast cancer. Apparently while flying somewhere this celeb had a conversation with with a random stranger about her breast cancer. At the end of the conversation the stranger told the celeb "don't hoard your cancer experience." Apparently he got a lot out of the conversation and her experience.


So in that vein, I thought I'd share a strange and maybe a little unsettling experience we had. We went to breakfast the other day at a little neighborhood restaurant we have been to a couple times. Our waitress recognized us from a prior visit and started to chat it up with us. She noticed our yellow, Livestrong wristbands and asked about the meaning. We should have realized then our waitress was an inquisitive sort...with no apparent filter. She sweetly asked if Roger had cancer and if so, what kind/where. Again, very inquisitive. She then asked if he was in treatment and how it was going. To which Roger responded with a shake of the head sideways but no verbal response. She then asked yet another question which sucked the air out of the room. She asked, " Terminal?". Roger simply responded "we all are 'terminal'....none of us are going to live forever." Me? I sat there dumbfounded. Normally, I'm fiercely protective, never at a loss for words. At that moment, I sat frozen for an endless minute until the air came back into the room. She then shared that her mother worked at an oncology center and has for many years. All we could surmise is that maybe she had a greater familiarity with talking about cancer and must have felt comfortable talking to us. After the strangest, most surreal 5 minutes of conversation, she trotted off to get our breakfast. I can't say we were offended. I think the moment was more unreal than anything.

We will continue to share our experience the good, the strange and bizarre, and the humorous as they happen. Angie & Roger

The oncology center

The second round of chemo has officially started as of this morning. We met with Roger's oncologist, Dr. Birhirray first thing this morning. Its part of the drill. Check in to talk about the last round of chemo, check blood work, etc. Dr. B said Roger's blood work looked good and that our reports about the past two weeks are in line with tolerance of the treatment. So, round 2 is underway. (here are the "before" and "after" photos of Roger - the after was taken within the last couple weeks)

Yesterday was a "bad" day by our unofficial ranking standards. It started out like any other day. I went to work. Roger took his morning meds and then set about to start his day. Around 1:30 in the afternoon, he called me to tell me he was feeling pretty bad and thought he might need to go to the emergency room. So, I left work and headed home. He said he had intolerable pain, nausea, cramps, etc. When I got home, I found him taking a bath to try to alleviate the pain. You see on top of this crappy cancer stuff Roger has yet MORE kidney stones. A couple in each kidney. So the pain he described was in his back in the kidney areas. A bath typically...in the past...could help alleviate the pain somewhat. The magic trick did not seem to be working. We decided to try to oncology infusion center first to get fluids and then if that did not help, we would head to the hospital. Turns out, what Roger most likely experienced as heat stress/exhaustion. He didn't fully appreciate the fact that his little compromised body cannot tolerate being out in this extreme heat for any period of time. Earlier in the day, he had been outside for a while. We're guessing it was really just too much for him. Today seems better compared to yesterday.

With the return of cancer, we have decided, well actually Roger decided, he is going to retire from work. Its a big change. A big decision but the right one. I looked at him cross eyed when he first told me because I can't imagine him doing "nothing". Likewise, his brain turning to mush from watching daytime TV is NOT an option. Roger told me that he wanted to retire because he stressed so much every time his phone rang. He was always worrying about the karting center, employee issues, if someone got hurt, etc. Made sense. So, he will slowly ease himself out of the karting center but will be "of counsel" whenever they need him. In place of going to work, Roger will take up his creative passions - more glass blowing, sculpture, making furniture, working on vintage cars, etc. We are going to adapt the garage with an AC unit and heat to serve as a make-shift studio. Much to Roger's dismay, I'm collecting requests for projects for him. A busy creative mind is a good mind. AND it keeps him busy to ward off the evil daytime TV zombie!!

Speaking of daytime TV, thought I'd share a recent funny. Well at least we thought it was funny. During one of the days of the first round of treatment, we were sitting as the chemo was pumping away through his veins. Naturally, the magic, zombie-making TV was on. A commercial came on for some sort of screen door device. We both sat transfixed watching the commercial and both said simultaneously "that would be perfect for the boat". I got his wallet, he got his phone, and away we dialed 1-800.... We got our little order placed and sat there rather pleased with ourselves. Roger then looked at me and burst our bubble of content when he said, "you realize, we JUST watched daytime TV commercial and ordered from a 1-800 number. We CANNOT watch anymore daytime TV. " Aughhhhhh!!!!!! The zombie-maker made us shopping zombies!!!!!! Aughhhhhh!!!! I told him we may need to block all QVC/Home Shopping Network type channels just in case.

We'll post more tomorrow. Hugs to everyone out there. Thanks for all the support. A&R

and so it continues

Much time has lapsed since we have updated this blog....quite honestly, I don't believe either one of us ever thought we would be revisiting the blog, let alone actively starting it up again. It, the blog, had a purpose which was communicating about Roger's treatment for esophageal cancer - the chemo, the radiation, the surgery and the recovery. We thought we were done. We thought the cancer had been excised, removed, killed, gone, done with... you get the picture. And, we thought we, Roger, was on the road to better health days. Now, nearly 2 years later - literally almost 2 years later to the day - it appears the cancer is back and is back with vengeance. And the world is a vastly different place. Roger is minus a few more organs (esophagus, part of the stomach, and most recently his gallbladder) minus 95 pounds (!), minus a lot of the confidence and minus a lot of his sense of humor.


So, the journey continues.

We've talked about me updating the blog for days. I've thought about doing it for days...but haven't had the ability? energy? focus? words? I don't know. I just haven't been able to do it. But regardless, here I am with the keyboard as we travel familiar yet not so familiar waters.

A quick review of what has happened over the last year. Roger has continued to evaporate before my eyes both physically and maybe a little emotionally. He has gone from 235 lbs when we started his treatment 2 years ago to now hovering between 140-150 lbs. He is 6'2". Translation: Roger is literally skin and bones. Literally. In March he had a pancreatic attack due to gallstone blockage which landed him in the hospital for another 5 days. They removed his gallbladder, pumped him full of fluids to clean his system and sent us home. Since then he has had his regular quarterly post-cancer check ups with the oncologist including CT Scans, blood work, etc. Every check up came back "clean" until 3 mos ago. The doctor saw a tiny spot on his lung. The spot was too small to biopsy so he said we will wait for the next check up. He thought there was a good possibility the spot was scar tissue from the complication after the esophagectomy. So, we waited 3 months. The optimist in me said, "yep, its scar tissue" . The pessimist in Roger said "no, its cancer". 3 months went by - Roger went in for tests in June. And, the results showed the cancer had indeed spread to his lungs - both lungs - and has spread to a lymph node in his chest. Metastatic cancer. We were devastated, crushed, paralyzed...I think the words were ripped out of us as were our hearts.

So clinical Angie the Researcher kicked in. Figure out all that we possibly can. Learn as much as possible. We'll kick cancer's butt! Its been 100 times more confusing this go around because its esophageal cancer which has spread to his lungs and lymph nodes. Its not lung cancer. Its not a blood or lymphatic cancer. Its cancer from his esophagus which has spread through his blood or his lymphatic system to other parts of his body. Chemo is our only option because the cancer is considered "systemic" or spread through the system. So, you have to treat the system. The other much larger challenge is that Roger is exceptionally frail. He just doesn't have the physical or strength or health he once had. Not to mention the emotional/mental beating he has sustained.

Chemo started 2 weeks ago on July 6. The routine is one day of 5-6 hours of infusion at the oncology center and then 2 days of continuous 24 hour drip via a pump he wears at home. The chemo is less toxic than last time because he simply would not survive the last treatment. He goes in tomorrow for round two. Friday they will take the pump off and the chemo/poison will set about killing the cancer cells and virtually everything in its path along the way. We track the days to try to help us predict the good/bad days for future treatments. As of now, the Friday/Sat/Sun immediately following treatment are the worst. Roger starts to climb out of the hole by Tuesday and continually starts to slowly feel better....just in time to start the process all over again. The schedule is on for 3 days, off for approximately 12 days and then back on. This will continue for 2 months at the conclusion of which they will test to see if the cancer growth has been stopped and if any of the tumors have been reduced in size. If good results, then they will continue treatment for another 4 months. By my calculations we should be done by the first of the new year.

Well, that's a start. You now have a basic lay of the land. I'll write more tomorrow from the oncology center as he gets his next round of treatment and will try to upload some photos as well. ~ Angie