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