chemo fog

There appears to be a fog that has set in...or so its called. Literally the term is "chemo fog" which is what chemo does to the brain. Apparently chemo causes patients to be forgetful and a be little spacey. Its has been a slow progression, but seems to have fully set in. Roger has a hard time remembering stuff and seems much more forgetful. Its been odd and disturbing and a little frustrating (you have to repeat yourself a lot) watching this side effect set in.

The other side effect that Roger is experiencing... we call the "er" effect...his hair is starting to fall out. He may soon be bald....er. Ok, those are HIS words not mine. I never NEVER say anything about the hair. Only Roger or my brother, Alan (who is also follically challenged), can make jokes about the status of one's hair. I may have to chase Roger-fur-balls as well as the feline ones.

We're half way through Week 4 and its still a rough week. Roger hasn't really felt any better since the end of last week. He just says he feels crappy. He looks pale and his face seems a little swollen. He doesn't have fever (a good thing). He has been and will through the end of the week go in for daily radiation and for IV fluids. Hopefully by week's end he will feel as well as he did last week. Sadly, he will more than likely start feeling better on Saturday or Sunday only to start the second round of chemo on Monday. It hardly seems fair. I guess life isn't about being fair, is it?

The ringing in Roger's ears has faded substantially. The pressure in his chest and tightness in his esophagus seems to be increasing. He is still able to eat soft foods and drink but it is getting a little tougher. We have a feeling that next week may be full of soups, ice cream, smoothies, etc. He's tough. We know he'll persevere. He just may never drink another milk shake or eat ice cream ever again. :-)

Me? I'm wading through cookbooks still trying to find interesting recipes that are good tasting, full of protein, easy for Roger to eat...and easy for me to cook when I get home from work. I'm also wrestling with medical bills and insurance statements. I am truly convinced that you have to have a PHd to navigate this part of the process. I end up having to take loads of tylenol and STILL never feel like "yah, I got that figured out...I know exactly who I need to pay what for what service" Seriously, its got to be more complicated than brain surgery.

It kind a feels like we're a little in limbo or maybe the twilight zone. You can't really make any immediate plans because you don't really know what each day has in store for you. Time seems to be in a strange warp - sometimes moving at the speed of light and sometimes frozen in space. Its hard to believe that we (ROGER) have been working through this for over 8 weeks total...treatment for 4 weeks now. It literally feels like yesterday when our hearts froze with the news that Roger had cancer.

Tomorrow's Thursday. We may have to go for pumpkins this weekend. Its Fall and the start of October afterall which means PUMPKINS!! We've started thinking about our Halloween costume for this year...just in case Roger feels up to celebrating the holiday.

I'll try to upload pictures of some drinking glasses Roger made when glass blowing. They are very cool glasses.

Much love and peace to all.

Weird day. Tough day.

Not sure where to start. Its Monday evening of Week 4. We had every hope that the week would start strong and finish the same. Um, that didn't quite happen. Nothing went as hoped...let alone as predicted. We'll start with where we finished...we "closed" the oncology center again. Went in at 2:00pm for a meeting with the oncologist....left the center at 6:15pm. How did we get to this ending?

As a reminder, Roger had a kinda rough weekend. Well, it turns out there is a reason he felt so crummy. A combination of things came together this weekend and today. Roger's blood counts have tanked. White blood cells have plummeted. There is a fancy term for this, neutropenia. Basically it means that Roger is very, very susceptible to infection right now because his immune system has taken a beating by the cancer drugs. So take out-of-whack blood cells and mix that with dehydration (despite drinking loads of fluids)...and you have a formula that will topple the strongest of people. And topple it did. Before meeting with the oncologist, Roger always has blood drawn to get a weekly read on how Roger's system is adjusting to the treatment. Today's blood draw nearly left Roger on the floor passed out. Fortunately he felt himself "going" and let the nurse know. They managed to pull him out of it before he lost consciousness.

Dr. B said it was the combination of Roger's poor blood counts combined with the dehydration that caused the problems. So this lead us to Roger having more fluids and a couple anti-nausea drugs. The last bag of solution finished at 6:15. Roger was back home and on the sofa by 6:30.

Happily Roger feels a little better...doesn't feel faint anymore. Dr B said we'll see how he does this week. He and the wonderful nursing staff warned us repeatedly that Roger could easily pick up an infection so, avoid crowds, avoid dirt, mold, spores, etc. Wash your hands. Wash your hands. Wash your hands. We have masks for Roger to wear if he is going to be around a lot of people. He's been told to wear rubber gloves when he thinks he's exposing himself to anything infectious. It all got very serious (more serious than it has been - if that's possible). We need to watch a little skin bump on Roger's back for possible infection. We need to watch for a fever above 100.5 degrees. We need to pay even more attention.

If Roger's blood cells don't improve by the first of next week, his chemo may be pushed out a little. Dr. B said he thought they should improve but we won't know for sure until Monday. There is nothing we can do to improve the numbers. All we can do to help is to try to avoid any potential infection. So, take no offense if we avoid any social gatherings, we're just trying to be careful.

So that's the end of the day, the middle of the day was simply confusing. Roger received a call from the genetic counselor. As mentioned previously we met with this gal last week. Roger did a test to confirm that Roger has the "cancer gene". We have been operating under the thought that he has it....his sister has it (and had two bouts of cancer) and her son has it. So, it seems reasonable that Roger has the same gene mutation especially because his cancer is in the gastrointestinal track just as his sister's cancer was. Here is the confusing part. The genetic counselor today said that Roger does NOT have the genetic mutation that his sister does. Or so the test results have indicated. HUGE confusion. The doctors want to test Roger's sister and then compare the tests. So, we're not really sure where we stand. Back to that deadly question...what if? What if he doesn't have the genetic mutation? Would that mean that he may not need the surgery because there isn't a genetic predisposition for the cancer to return to the esophagus? What if? Or, what if some test wasn't conclusive enough? Or, what if there is another gene mutation slightly different that hasn't been fully identified. This whole genetic-study-thing is relatively new for cancer.

The nursing staff in the infusion area proved themselves yet again to be the amazing caring people we've been watching for weeks. They ALL gathered around one of the patients receiving chemo and sang happy birthday. I know it sounds like a small thing but I gotta tell you that simple gestures like this touch the heart and warm the battered-spirit. All the patients in the room turned to listen, some sang along, and most clapped when the song was over. The spirit and joy from these nurses left the room a little more light hearted.

Weird day. Tough day. Physically draining, mentally taxing. Will keep you posted as each new day unfolds.

On the eve of Week 4

What happened to predictability??? The word must vanish from the dictionary when you or someone you love has cancer. If you have cancer or someone you love has cancer, you can no longer predict how that person will feel on a daily basis. You can't predict what his/her disposition will be. You can't predict energy levels. It just seems impossible to predict anything. Maybe if you stop and think, there really isn't anything predictable about life, right? So what am I complaining about? Its just life.

After kinda fading last night, Roger decided (and I completely agreed) that he was going to "take it easy" today. No working. No pushing it. The big activity of the day was going out to a go-kart race at a local track with his friend Bill. After spending a couple hours at the track, they returned and Roger said he felt even more pooped than yesterday ...so another souped up milk-shake with extra protein powder to amp up the protein and the calories and some good ol' easy-chair time. Hopefully that will help. We have a feeling that the reason he is feeling worn-out is because his blood cells have taken a beating. Red, white, and platelets all numbers have come down. We have another appoint with the oncologist tomorrow and more blood drawn. Unfortunately we won't have the lab results for a couple days. It will be interesting to see what the counts are now. The long and the short of it is, that Roger probably needs to scale it back a little, take a nap or two during the day, and still consume as many fluids, proteins, and calories as possible. We'll see what Dr B has to say.

We continue to hear of more people with cancer - even esophageal cancer. I have two co-workers who have family members with esophageal cancer. Its so strange. We had never heard of this kind of cancer and now know of two people through my office and then more friends of friends or friends of family members. We also have learned that my aunt (my mother's youngest sister) has been diagnosed with non-hodgkin lymphoma. And then all the pancreatic What is going on?? Is there something in the water or the food? Or is this just another "fun" part of getting older? You never noticed these things when you were in your 20's or 30's and then BOOM! post 40 and you hear about it more and more.

I've included a couple extra pictures. The one at the top of the page is from yesterday when Roger was working on the door to a linen closet upstairs. The photo to the left is of Roger glass blowing. Many of you may not know that he has taken this up. He has a natural ability and makes some beautiful vases, bowls, glasses. Don't be surprised if you receive a Roger Original for xmas. He is still trying to keep up with some private classes because he enjoys it so much. I've included photos of some of his recent creations.

So that is where we are today. I think the wind has been taken out of both our sails. It feels like such a let down that the good feeling and energy couldn't just stay with Roger through the whole weekend and beyond. Hopefully its just a temporary thing.

Thanks to everyone out there for all the calls and get-well/hang-in-there cards and posts to this blog. Roger really appreciates the continued out pouring of love and support.

Saturday like any other Saturday...or not.

Saturday night. A quiet night at home. We thought about heading down to the boat but the weather promised to be more of the same...rain....so we decided to stay home. Happily the weather actually cleared up and it was a beautiful day during the day. Roger set about like a mad man with a list as long as my arm of all the things he wanted to complete. And so the day went with both of us buzzing around doing our lists of things to do. Roger worked on the house - finishing the door way for the guest bath and doorway for the linen closet. The day felt like any other Saturday. And then, there was a reminder of our current reality. The reminder came in the form of Roger feeling faint and having his heart race while he was at out at the store. He came back to the house a little concerned. Naturally. As we look back at the day, we think that he felt this way because he didn't have enough fluids to drink and most likely not enough calories to eat. So since then, he's had a couple gatorades, and water, and dinner. Much to our relief he feels better now.

It was a reminder that we need to be more careful. It was a reminder that there is a new normal despite the fact that the day felt so much like our old normal. So the day's lesson... lots more fluids and lots more calories. We're still going to try our best to live each day "like a regular day". And relax and just "be".

Time is ticking away. Roger and I differ in our approach to time (as anyone knows who knows us). One of the interesting differences during this cancer-process is that I keep track of the time
and look for milestones...i.e. "three weeks down two weeks to go until the treatment part is done". Roger wants no part of that. He is in the moment and the moment only. He'll show up for the appointments and I'll keep track of the appointments. A perfect partnership. This week marks the start of Week 4.

We've watched a couple movies, ate pizza in, and basically took it east. The rain is softly singing a lullaby to us. I think its time to call it a night. More later. A&R

Temptation...

Summer has faded and fall has announced itself with a dreary week of wet weather. Frankly, I don't believe there was much of a summer to speak of. With the weather being so unseasonably wet and cold and then coupled with Roger's diagnosis...well, lets just write off this summer and count on having a much better one next year. Next year will be the year of celebrations - the completion of Roger's treatment AND his 50th birthday (though the picture inset would suggest his 10th birthday). There will definitely be some big

party but we also may plan some sort of destination celebration for those inclined to get-the-hell-outta-dodge.

Tomorrow is the end of week 3. Roger said he feels so much better than he has in weeks. The sore throat is still there though less, the pressure in his chest is much less. Ringing in the ears is still there though less. Its a really good week. His energy level is soaring. He is actually sleeping through the night (which is much welcomed by me). I think he's been able to settle into a routine...as much as he hates "routines" or "schedules". A little predictability right now isn't such a bad thing having completed 2 weeks of the scary unknown. Hopefully next week, Week 4, will be smooth sailing.

We had a moment of temptation last night...don't worry, nothing X-rated to follow. As we were talking about how well the treatment was going overall, we actually allowed ourselves to go down the path of "what if".... what if the chemo/radiation "killed" the cancer and there were no visable signs of it. What if? What if the doctors said "well, it looks like its gone. We don't see any need for surgery"...What if? It is a dangerous path of temptation to walk. This whole treatment process and ultimately surgery are counter-intuitive. Roger looks and feels well. Why should you have to undergo such a difficult treatment process, and such an invasive procedure when you don't feel sick? Purely academic questions obviously. We speculated on the thought of possibly avoiding the surgery but then came back to reality when we remembered that EVERY doctor (oncologist, radiologist, surgeon - at three hospitals) ALL said, "you should have surgery". The big deciding factor is the cancer gene that Roger (and his sister and nephew) carries. This gene mutation suggests that there is a greater likelihood that the cancer would return to the esophagus if not removed. So...be prudent now while you're better able to handle the surgery....or gamble that the cancer may not return and put off having the surgery....Hmmm, gambling with $$ is one thing. Gambling with your health and ultimately your life is another thing.

We met with a genetic counselor, Stephanie Cohen, last week. Fascinating. Absolutely fascinating. First off, the woman was sooooooo geeked out on this stuff that you couldn't help but get excited. She has been doing this for over 10 years. She explained the concept of a gene mutation and the implications for the possible reoccurance of cancer and where it might present itself. As we were sitting there talking with her, asking her all sorts of questions...Roger paused and with great sincerity asked her "so do you discuss this kind of stuff over dinner?" All I could do was roll my eyes. The poor woman didn't know how to respond. No one had ever asked her what she discusses over dinner! Go figure, no one had ever asked that question. No big surprise. Roger's motivation though, aside from shocking the hell out of the woman, was to make an impression. He wanted to stand out in her mind so that down the road, if she happened to be reading something about the gene mutation in question, that she would think of him. And, if there were some new clinical trial or study going on, that she would possibly think to contact Roger. Ok, so maybe not the most orthodox approach to making an impression but I have to give him points for creativity. Life with Roger is always interesting. We learned that there are these things called registeries. We can sign Roger up for different registeries. His name would then be out there for different clinical studies or trials. The additional benefit is that Roger might get cutting edge tests/screening that insurance would not normally pay for. And, maybe just maybe, his involvement and others like him will help researchers figure out how to prevent the mutation or the cancer or identify it earlier...maybe eventually find a treatment.

We're ready for a wonderful weekend - rainy weather or not! Hopefully we'll be able to get a couple walks in.

much love, A&R

Week 2 of radiation down - approx 3 more to go

Its hard to believe that only two weeks ago, we started down the path of treatment. The second week was by far much much better than the first week. With the start of the second week, Roger SLOWLY started to feel better. By Wednesday he was driving himself to radiation and to work. With each passing day he found that he had more focus and more energy. It is really amazing to know that he felt so poorly just a few days earlier. I've continued to watch Roger appear, disappear, and reappear. We've laughed more in the past couple days than we have in two weeks....it feels good to laugh to the point of tears.

His energy is back and his general disposition is positive as the most dreadful chemo side effects have diminished. Unfortunately, he still had a few latent chemo side effects and is starting to feel the cumulative effect of the radiation. His mouth is "peeling" and he has a sore throat (chemo effects) and the ringing in the ears, though less, is still ringing. Apparently we learned that Roger may have permanent hearing loss from the chemo...we won't know for sometime. He is starting to feel a pressure in his chest around the breast bone (radiation effects). Fortunately he is still able to eat and drink fluids by mouth but he is feeling the need to be careful about what he eats. No "sharp" or course food - no chips, no chunks of meat, etc. It may get very challenging planning and preparing food.

As mentioned, his energy level is climbing. You can see him in action cleaning in the attached photos...sadly his energy to clean seems to only appear when he is on the boat. At home, the energy seems to "vanish". Funny. (um, not) Oh well, at least he's consistent.

This week is week three - 5 days of radiation. Next week will be the same. The following week should be the final week (we think) of radiation and one more, the final, chemo treatment. ugh. We're not looking forward to it. He's not looking forward to it. For now, we'll focus on enjoying the good days and will try to eat as much "good" food as possible. One day at a time. Each day a new normal.

We met with Roger's oncologist today, Dr. Birhiray. He said Roger is doing really well. His blood work - white blood cells, platelets, red blood cells - all good for where Roger is in the process. Dr B thinks that Roger may have bottomed out and is on his way back up...just in time for another chemo treatment in a couple weeks. :-) Dr B was genuinely pleased. We were genuinely pleased. Hopefully this will mean that Roger's immune system is on the mend and not as susceptible to infection.

I have to apologize to all of you out there regularly following this blog. I have had every intention of updating daily or at least regularly and have woefully fallen behind. Life, as you can imagine, has gotten a little complicated. Actually much more complicated than I ever anticipated. Not impossible. Just very complicated. I marvel at you parents out there - especially the single parents - I don't know how you all do it. Managing the house, bills, your loved ones, work..... EVERYTHING. There just aren't enough waking hours in the day. Work got a little crazy with a last minute project with a tight deadline. I fear that I didn't do anything well but did my best.

We're a little nervous for the coming weeks of continued radiation....fearful that the swelling of the radiated esophagus may close and that he may eventually have to have a feeding tube inserted. For now though, he's OK, full of energy, chatty and chirpy and obnoxiously funny. Feel free to call Roger - he is feeling good and is open to chatting.

More in a couple days.

A weekend full of roller coaster rides

So I mentioned yesterday in the brief post that we had a rough weekend. I think we both thought the cancer drugs (the nasty cell-killing drugs) would start to taper off...that the horrible feeling would wear off even if just a little tiny bit. Saturday morning we were encouraged when Roger announced that he felt a little better. That was first thing in the morning. As the day wore on, so faded his energy and that tiny little bit of feeling good. Come Sunday, he felt worse than ever before. Roger's nurse wrote up orders for him to be able to go to the hospital outpatient oncology floor for fluids if he needed it. He needed it. So we spent a quiet afternoon at the hospital. He slept, I worked on the laptop and watched bits and pieces of the colts game. The quiet minutes of the day slowly ticked by. He felt better after receiving the fluids.

Monday proved to be a good day. Roger was responsive and chatty - not only to those friends, family who called or the heathcare personnel but even to me. When he's at home or in the car with me, its pretty quiet...and that's ok. The beauty of being with someone you love who knows you and who you know is that you don't have to say anything. You can just be. Just breathe.

The only conversation that I have continued to push is "how/what are you feeling" as its the only way for me to truly be able to watch for signs that Roger may not be doing well. I try to balance asking those questions with NOT being TOO obnoxious (certain things are in your DNA that you simply can't help). Its a task...I'm task oriented. Problem...solution...fix it. Sounds simple but a little more difficult when there is the whole human element in there.

The new "normal" includes lots of chemicals and drugs, an altered diet rich in proteins and fluids (and fastfood, ugh - Roger's choice not mine), an altered approach to communication or lack thereof. Its a new normal and that's the only way to look at it.

Roger has radiation this week - every day. It will slowly build up in its affect on his esophagus. Right now, he says he doesn't really feel anything from the radiation per se. His throat is sore and the inside of his mouth is starting the "change" - both apparently from the chemo drugs. He has a magic potion...literally called Mary's Magic Potion...that he's supposed to start gargling and swallowing to reduce the sore throat and sores in the mouth. You gotta love something called a magic potion. Which reminds me of a special moment we had on Monday when we were at the oncology center meeting with Roger's oncologist and then Roger getting his fluids. He had just gotten into the chair for the fluids. His favorite nurse was buzzing around getting everything ready. In another chair, at the back of the room was an older gal and what appeared to be her daughter. The older woman was getting the chemo. We had seen them and chatted with them in one of the waiting rooms. As we got settled, you could see this older woman motion Mariska (Roger's nurse) over to her. She gave Mariska a MAGIC WAND (think lights and whirling and fairy music a la Disney Land) and told her to go over to Roger and wave it over him and wish him well wishes. Mariska did exactly that. Sure a little silly. But more than that, a tender, sweet sweet intention from one person fighting the fight to another. No barriers to communication - and no words....just a sweet, simple sincere thought from one stranger to another.

It was such a sweet, silly moment that you had to smile and laugh. ~a

Quick update

Rough weekend. Ended up at hospital oncology center on Sunday for fluids - despite drinking fluids all day Saturday, Roger still ended up dehydrated on Sunday. Today, happily, he is much much better. He didn't sleep much over the weekend but we're hopeful that tonight he (and I) will sleep better. Still trying to make sure he's eating and drinking MORE fluids. We will know the signs for phase two of chemo at the end radiation and will hopefully be able to anticipate and prevent as much of this as possible. Learning and employing all the "tricks" to staving off the side effects of chemo.

He is 100% more chatty and alert than I've seen in several days...we had a couple Roger moments which I'll share in the next entry. This was more an Angie moment. :-)

I'll write more in the next couple days, been buried with a last minute work project that consummed the weekend and is due this Wednesday.

As always - thank you thank you for the love and support.

The last day of chemo

Well, we made it. Today was the last day (for this round) of chemo. Roger has had chemo drugs coursing through his system Tuesday through today. As I've shared with you before, each day seems to take its toll on him a little more. He has only been a little quesy throughout - but has continued to feel more terrible with each passing day. He said its kinda like the flu on steriods. He spends 75% of the day sleeping whether at the oncology center while getting drugs, in the car on the way home, or at home home. Until today, he had been staying downstairs on the mainlevel of the house with me - sitting in his chair in the family room. Today, all he wanted was bed. We anticipate that the weekend will probably be bad, but that come Monday or Tuesday, he should not feel the chemo directly. The drugs at that point will continue to work their "magic" on all his cells behind the scenes.

The next impact that he will feel will most likely be week three of radiation, the week of Sept 21. According to the nurses, this is when the cumulative effect of the radiation will start to cause discomfort in the esophagus. We're still hopeful that Roger will be able to manage to eat/drink without the need of a feeding tube. He really doesn't want a feeding tube.... He is expected to have a total of 5 weeks of radiation; we just completed week one.

As Roger has been going through this, I have tried to stay busy with doing work remotely (sometimes a little tough since the oncology center isn't wireless), reading all of the chemo/radiation materials the nurses have provided, researching and planning meals for now and the coming future. And then when we get home and I get him settled in for the evening, I go to the grocery and then start cooking. I've been steaming and roasting vegetables to puree and mix into other foods later, making soups to freeze, etc. I've also started stock piling items to make smoothies and to supplement the "soft foods" with protein. Trying to make the food as nutritious as possible (with loads of extra protein) while still being interesting to Roger.

We've been taking a walk every evening. Tonight's was very short. We'll try again tomorrow.

Much love to all ~ R & A

Day 2 of treatment completed...on to Day 3

We were in the hospital for a fraction of the time yesterday compared to Tuesday. All in, we were there for 3.5 hours. Not bad. The woman (nurse) in the picture with Roger is Mariska. She has been with us everyday and even came in yesterday, on her day off, to work with Roger. Really, an amazing woman. Actually all of the staff at the oncology center have been wonderful. All sweet, cheerful, tender, smiling, with open arms for hugs to anyone who might need it. They manage to get patients laughing when all the patient wants to do is crawl into bed and pull their covers over their heads.

It has been amazing to watch the medicine (poison) at work. As we all know, Roger is a big burly, vital, fun-loving guy. I've watched him over the course of 24 hours kinda "vanish" for lack of a better word. He sleeps constantly - which is good. When he's awake, he's not chirpy. He stares at the TV without really seeing anything. He said he is feeling more and more puny, achy, tired, and generally crappy. So far he has been able to ward off nausea and vomiting. Today will be the day it would probably kick in if its going to kick in (keep your fingers crossed that it doesn't). Its hard watching him go through this...and selfishly, I miss him. I like my big, goofy, chirpy, twisted-sense of humor hubby. I know he'll be back. once he feels better. Just kinda miss him.

We go back in today for meeting with a dietitian at 10, radiation at 10:30, and more anti-nausea/vomiting drugs and fluids at 11:00. We are still hoping that this "extra" dose of anti-nausea drugs with fluids is helping Roger keep from feeling really really horrible. Obviously, its still very early in the process. These drugs will keep working on Roger's cells (bad cancer cells AND good blood cells) for many weeks to come. Because the drugs kill so many cells, Roger's system will be very vulnerable to infection, anemia, bleed out (blood won't clot as well as when the cells are healthy). We've taken to carrying hand sanitizer EVERYWHERE we go. We aren't eating out in public so much any more....just generally trying to be careful. The weirdest symptom Roger has had is chronic hiccups. Apparently one of the chemo drugs is known to cause this for certain people. So the poor guy spent a better part of the day hiccuping when he wasn't sleeping. The only two things - aside from some psychotic drug - that seem to help are drinking Boost or eating some chocolate (thanks Mom & Dad for the basket of chocolate goodies).

This week has additionally been a tough one in that one of my aunts passed away from cancer. A huge emotional blow at two levels - the loss of my aunt, and then the loss of another person because of cancer. The visitation was yesterday and funeral is today. While I wasn't close with this aunt, I am close with her daughters. I originally had planned to go north (they are in South Bend) for either the visitation or the funeral but found that I just couldn't tear myself away from Roger. I had a huge group of volunteers ready to come and sit with him so that I could pay our respects. As, I watched Roger fade from vibrant to puny...I just couldn't imagine leaving him, even for just a couple hours during this first part of the treatment. I know it sounds silly. This is all still a little too fresh for me to be rational.

That's all for now. I am going to go pack for the morning at the hospital - juices, Boost, fruit, peanut butter/banana/honey sandwich (Roger loves them). More later.

The actual treatment starts...

Its hard to believe that the days could possilby get any longer...but they do. We started with radiation this morning at 9:00 am at the radiologist's office. They checked the radiation field and then administered about 15 minutes of radiation. Roger afterward said it kinda felt like a sunburn. From there we went upstairs to the second floor to oncology. Roger was in the chair at 10:20am. We left the oncology center, after completing the last of 8 bags of drugs/chemicals, at 7:30 pm. It was a long day. I've included a couple pictures from when we were in the chemo area. One shows his "port" where the drugs are fed to Roger interveinously.

Fortunately, one of the several anti-nausea/anti-vomiting drugs that they gave Roger had a sedating effect. So Roger was able to nap on and off throughout the time in the chemo chair. We packed snacks, drinks, food, movies, computers, etc to occupy the time as best we could. Roger found a chair that was off in a corner away from all the other patients getting treatment - though further away from the windows than I would have liked, it turned out to be the very best spot because we were out of all the chaos. Roger had an appetite throughout the day including dinner this evening.

He seems to feel "alright"...a little puny, but OK for all practical purposes. The nurse told us, if Roger does experience the chemo effect, it will most likely start on day three of treatment, Thursday, and will continue for several days. For now, he's ok. He has a tube leading from the port to a "pump" that he will carry around with him until Friday. They will remove the pump Friday. The pump is administering a second type of chemo drug, 5FU. The one he received today for 6 hours was Cisplatin. We both had a laugh when the nurse produced a fanny pack for Roger to wear to carry the pump and drug. You see, Roger has a tendancy to poke fun at people with fanny packs. I should have had the camera handy when he put the pack on...his outfit was plaid shorts and bright blue fuzzy hospital socks with this flipflops and a very handsome black fanny pack. Very studly. :-)

There was ,of course, another "roger moment" when he had to harass the sweet little nurse who had been helping us all day today. I guess he didn't "harass" her - he just let his warped twisted sense of humor out. The nurse was hooking up the pump, trying to tape down the tubes that ran from the port in his chest to the pump/fanny pack. She kept trying to move or relocate the tube on the chest as she was afraid the friction would irritate Roger's nipple. Mr. Eloquent said he didn't mind as long as he could still play with his nipples....poor little nurse. Fortunately she burst out laughing, shook her head in my direction and said "I have a husband like this of my own. I feel for you."

It was tough for both of us today - just sitting in the waiting rooms. Patients were wheeled in from ambulances, on stretchers, in wheel chairs, walking with canes, etc. In the chemo ward, you saw these incredibly frail women and men - too frail to be walking let alone getting huge doses of poison pumped into their veins. It was very moving.

I had the pleasure of seeing an old friend from high school. George is battling colon cancer. We had a nice moment to catch up and briefly share the journey of cancer. George has been fighting his fight for several years. Its a small world, getting smaller every day.

The balance of the week will be daily trips to radiation and chemo. We thought we'd be able to avoid going to chemo every day because Roger has the pack. The nurse said today that they want us back every day so that they can give Roger anti-nausea and anti-vomiting drugs and give him fluids to replenish his system. While inconvenient, we both like the fact that they want to try to minimize the discomfort that Roger will ultimately feel.

So, we enjoyed the evening when we got home. Had take-out from our favorite italian restaurant. Then, when Roger was up for it, we went for a walk around the neighborhood. Cleared our lungs, got the kinks out of our system, and got some good fresh air for Roger.

Tomorrow is another day. Keep all the positive thoughts coming our way. Lv, R&A

This whole cancer-thing makes you really stop and think...about the disease, about the person with the cancer, about life, about the choices you make, about the life you have with the person walking with cancer. It makes you think about other people making the same or similar journeys and how they are enduring the same. As we get further entrenched into the "system" we have seen all walks of life touched by cancer. Many frail, delicate souls going through the same motions that Roger is getting ready to go through. Some are in the doctors' offices alone, some have one or more family/friends with them. As I watch, I wonder and hope that they have at least half the network that Roger has. I can't imagine anyone going through this alone.



The other thing I often think about are all the different health care providers in and around the treatment of cancer. I can't imagine sitting across from someone the first time they learn they or their loved one has cancer...watching that person or those persons either slowly crumble under the emotional weight or fight crumbling publicly so that they can hold on to their senses or avoiding the entire emotional impact while trying to remain intellectual and clinical. I know for me, when I sat across from the doctor and nurse when they told me that the cancer had spread into the lymph nodes I fought the emotional impact while trying to remain clinical/intellectual....there was too much important information to be absorbed first before emotions could come into play. And still, a silent tear or two escaped while fear mounted. I took copious notes, random words I heard, to try to keep in the intellectual and out of the emotional. When the doctor and nurse left me to gather my thoughts, absorb what I heard, and generally try to start breathing again, I had the random thought "I would hate to be one of them telling me this news...what a sucky job to have to deliver this news to someone".



This weekend, we decided to come down to the boat here in Louisville for the holiday weekend. The boat brings us both peace. Last night was the first in weeks when Roger slept a long, solid, full night of sleep. He was peacefully snoring away next to me and woke very little. The weekend will be filled with a lot of "nothing" and a whole bunch of spontaneous naps...in fact, as I type he's snoring away again downstairs in bed. (he snores a lot in case you didn't know :-))



Cancer (or any illness) gives you a lot of perspective about what truly matters in life... the people you love whether family or friends. The outpouring of support we have received has been heart-warming and gives us strength. thank you.


As a word of warning to all of you following the blog, as the days and weeks progress, Roger wants me to take more photos (as you can tell, I like to take pictures!) of the journey so that he can go back and review. This includes after surgery. I think he may be setting me up with to look like some heinous spouse taking photos of their sick loved one for an insurance policy. Soooo, to clear my somewhat tarnished reputation I am publicly announcing to all that this is ROGER'S request...NOT me doing it on my own. Also, I'm giving you fair warning that my darling husband may go through some physical transformation in the process that may be a little unsettling if you didn't know. So, you've been warned.


Tuesday morning radiation at 9am. Chemo starts at 10am and will go for six hours. Will try write more Tuesday night if not sooner. Enjoy your holiday weekend. If you don't have perspective, find it. If you haven't gone to the doctor recently, go. All our love. R & A

And the marathon begins...

The day started at 5:30 am when we left the house to head to St. Vincent's hospital. This morning Roger had outpatient surgery to implant a "power port" which will be used to ultimately administer the chemo. Basically a port, as we have come to learn, is kind of like a pin cushion under your skin; it has a tube which feeds into one of Roger's veins. The port is in Roger's left upper chest/shoulder area.

The reason ports are used is because it helps reduce the number of times that a patient has to have blood taken or medicine administered through veins in his/her arms. The port is used 90% of the time to take blood, administer chemo, give fluids, etc. In Roger's case, the port will be especially helpful because he has very small veins.

After Roger was released from the hospital, we headed over to meet with the oncologist, Dr. Birhiray. This meeting was to learn the logistics of the chemo treatment next week. The chemo process: on the first day, Roger will be given cisplatin over the course of 6 hours while at the oncology center. Before leaving they will give him a "pack" (kinda like an insulin pump) which will slowly administer the remaining chemo medications over the course of 96 hours. We go back in to their office after the 96th hour to have the pack removed. Roger will also be given radiation at during this first week with the chemo.

From there, Roger will have 4 more weeks, 5 days a week, of radiation without chemo. After completing the radiation, he will go back in for one more week of chemo. And then it will be 3 weeks "off" so that Roger's body can recover from the poison and radiation. If the prescriptions the doctors gave us are any indication, this chemo should prove to be pretty horrible. Of the 5 medications I picked up today - three are for nausea and/or vomit, one is a cream for the skin over Roger's port, and the last is a pain medicine.

Roger has some pain/discomfort tonight but all things considered seems to be doing well. He's alert and chatty. the port is pretty uncomfortable.

We believe we are ready for next week....as much as we can be. Keeping track of all the appointments is very energy consuming. There's so much to keep track of i.e. which doctor you are seeing, what building the doctor is in, etc. Obviously the radiation alone amounts to a ton of office visits - 28 or more a month. I've had to get a new calendar specifically to track the appts for us.

Hurry up and wait

We have had continued meetings with doctors. Roger started the radiation "mapping" process on Monday. They took another CT scan to determine where the radiation "points" will be. This process is supposed to take about a week to identify the exact points/areas where the radiologist will administer the radiation. Apparently this needs to be very precise. We thought the chemo and radiation would start this week but it appears that treatment won't start until next week...a good and bad thing.

I thought Roger would be glad to have an additional weekend to go down to the boat or get projects done or simply not have any discomfort. He wasn't relieved at all. In fact, he was a little put off that we didn't start this week. Basically he said he just wanted to get this started...and get it over with.

Roger is still holding up well, though the mental part of this is causing a little strain. He stops and wonders if a new pain or discomfort is related to the cancer or is it "nothing" that he would have ignored before. We both believe that "nothing" doesn't apply anymore. We'll tell the doctors tomorrow and Thursday - just in case.

As we get ready for the long haul, we are looking for suggestions on: movies & television series which we can rent from Netflix. Roger isn't big on reading so movies/series will be the best bet to occupy his downtime. Send your suggestions.

Thats all for now. More tomorrow or Thursday.