Its a good day

I got home this evening after work and walked into the courtyard on my way to the back door to be greeted by this charming man. Looking a little puny, and a little rumpled, but just like the guy we all know and love. Roger was up and about albeit for short spurts throughout the day. He said he feels better than the day before - the pain is less and he's able to swallow a little tiny bit better.

He called me late afternoon to share an image too priceless to pass sharing. Now remember, our sense of humor is a little "off" to begin with so hopefully I won't offend anyone...Mid afternoon Roger saw our neighbors across the street out raking their leaves. They are an elderly couple who have adopted us and we've adopted them. Roger decided he'd go out and help them bag their leaves. Two additional neighbors came out of their houses to start raking/bagging leaves as well. Roger said you should have seen the sight (and we're not exaggerating). They were quite the motley crew: an old gal with 1.5 feet, an old guy who suffered a couple strokes and can't move quicker than a shuffle (he had to sit down and watch), another neighbor with one arm (no kidding), and the last neighbor with a bum ankle that she twisted while traveling in Budapest, and then the "robust" guy in the crowd, Roger who just finished chemo and radiation. Roger said it was really laughable. No one was making any big progress in their respective leaf raking attempts. The above pictures are how Roger looked after helping our neighbor bag TWO bags of leaves. He said he knows he's not going to win any leaf bagging awards this fall. I told him he can do them ALL next fall if he wants to make up for it. :-)

As you can probably deduce its a better day today than yesterday and the day before that. You can't possibly imagine how excited I was to see Roger up on his own and not headed to the oncology center or headed to bed. He was laughing and joking a little. He ate and drank a little. It really is a good day. Hopefully this is foreshadowing for a good weekend.

More soon. Love R&A

Progress is measure in tiny steps

I've been thinking on and off throughout the day about what I would post tonight. I often feel like we're saying the same thing over and over. And to some degree, that is what life has become, a lot of the same over and over (kinda like the movie Groundhog Day). Its not entirely fair to say that each day is exactly the same, because it isn't.

The tiny step today: Roger feels a LITTLE better than yesterday. The sore on his tongue is a little less inflamed, the pain in his chest and throat has been dulled slightly, he ate an egg early in the day, half a milkshake midday, and then half a cup of soup for dinner. Of course this isn't anywhere near the amount of nutrients or calories he needs but we are happy to have him eat ANYTHING. Every meal suggestion is greeted with the soon-to-be famous Roger scowl...and every grumpy Roger look is greeted with the soon-to-be famous Angie"don't EVEN say" it scowl back. We're quite the pair with our "looks" at each other. Fortunately I know he doesn't mean anything towards me personally (I know and remember how he used to love my cooking pre-cancer) and he knows that I am making the food/drink suggestions because I love him and want to get him well. I went to the grocer tonight to pick up a couple things...an hour later I return to the house with a couple bags. Roger looked at me quizzically...thinking I was only running out for a couple things. I had to explain that I walked the aisles at the grocery looking for something he might like and might be able to eat.

Roger has been a champ throughout this. I hope that I would have the same courage, strength, tenacity, and grace to get through the treatment like Roger has. Sadly, I don't know that I could endure half as well as him.

Roger had hopes that he would have had enough energy to rake some leaves this afternoon/evening. Unfortunately, the energy still hasn't returned. So, once I got home, I raked and bagged, 10 bags of leaves. It was a beautiful evening for it. Leaves were good and dry...not to mention down-right beautiful with all the different colors. And, the leaves smelled absolutely wonderful - a little musty, a little earthy. The downside of the leaf raking was the damn Ginko tree. If you are not familiar with this tree, let me tell you it has these horrible "fruits" or seed-things that drop in the fall. They are the size of a large marble and splat with a pop when you walk on them and ooze stuff. The smell is...STINKY....foul...horrible, etc. We are going to see if there is a way to "sterilize" the tree to stop the stupid little fruits from falling. You gotta rake these things up on a regular basis or it becomes a HUGE foul mess after a rain. I tortured myself by looking up into the tree to see how many of the little buggers hadn't fallen. I estimate about 40 b'zillion of the damn things clinging to the tree tops filling themselves with the vile Ginko-stinko juice. its not a good thing to see as you realize you are only half way through your raking/bagging for the day. Um, as you can tell, we're not huge Ginko fans.

Roger continues to go in daily for fluids and anti-nausea drugs. We'll get "orders" for the weekend just in case he is feeling puny. If Roger feels up to it, we may go down to the boat to see if the leaves have popped in Louisville. Otherwise, we'll hang here in Indy. We have pumpkins to carve! I hope to get the camera out. Roger is down about 10 pounds and has lots his beard and obviously his hair. The sparkle in his eyes is a little dimmer.

So that's where we are for now. Roger should be feeling a little better tomorrow and Friday and may be up for talking or texting. Feel free to drop him a line to let him know you're thinking of him and cheering him on. As always, thank you thank you. Love, A

Every day is different

Its Monday. It was supposed to be the start of a better week for Roger. Based on how the day progressed, I'm not sure what the balance of the week holds for us.... Roger is in intense pain from his tongue, through his throat all the way down the esophagus. You can see the pain in his eyes, in his body and the way he carries himself, and the fact that he just won't/can't eat much. Thank heavens for the IV fluids at the oncology center and the hospital. This may be what keeps him going for the next several days. Today we had a delay in getting the fluids because Roger's port was blocked due to a clot. It took a couple different attempts to reinsert the needle to the port and then to finally flush the port/vein with a blood thinner. The process is a little unearthing as you realize the nurse is trying to clear a clot which has formed. Its not unusual to happen...just a little scary...and of course Roger does NOT like needles to begin with. Marishka says its always the big burly guys that melt around needles. I know that to be the case with Roger and with my brother Alan. Me? Needles don't phase me in the least.

His tongue is swollen and has sores so its become pretty difficult for him to talk. If he does talk on the phone, its very briefly. He's better with texting for now. His relief is in the form of sleep when he can doze off. We're trying something new for the pain - hopefully it will help. I struggle, as would anyone, watching him flinch and wince with pain especially knowing that Roger has tolerated years of chronic kidney stones without pain killers. You feel lost knowing that you can't possibly do anything other than offer a tender touch, chase prescriptions, fluff or rearrange pillows, give foot rubs, try to find a food or drink that will be palatable...even if only for that given moment...anything to make the pain go away.

Roger's blood counts are starting to drop. The counts are "decent" today but will continue to spiral downward and with them will go any "good" feelings that Roger might have. Its such a brutal process that you go through with chemo and radiation. Hard to believe that my healthy robust lively spirited hubby has transformed into this sleeping giant.

We talked to Dr. Birhiray today. Its good having him and the wonderful, wonderful nurses there to cheer us on. Dr. Birhiray was exceptionally pleased with Roger's progress (even if we don't feel like we've made progress). He said that Roger is so much better than most of the other patients he sees - he said its more the norm for patients to end up in wheel chairs coming into the office due to weakness and also to end up in-patient in the hospital. So we need to clutch onto what the professionals say and focus on their positive view of Roger's progress. In an attempt to help keep Roger hydrated, he will continue to go into the oncology center daily throughout this week and next week as needed for fluids.

We will see Dr. B again in a couple weeks to discuss how Roger is doing and see when the surgery will be officially scheduled. So much to think about...

As we were waiting for Marishka to get Roger's fluids going this afternoon, we glanced around the infusion room. We saw a couple different pairs of people new to the room. After watching and listening to bits of their conversations, we realized today was their first day for chemo. It left us both with mixed emotions. We remember too vividly the first day...the terror, the feeling of being lost, the feeling like you won't ever take a full breath of air again, combined with the emotional struggle to remain "present" with clarity so that you can remember everything the nurses say and layered on top of all that the desire to not become emotional. Thank god for the nurses who help you hold on, help you hear, help you breathe....and generally ooze this sense of caring and love. I tell you, it made such a difference. I just wanted to go over to these rookies (like we're old pros or something...how funny) and tell them, "just hold on and focus on each day, one day at a time - take every hug offered to you, it will give you strength - ask loads of questions and take notes and don't be afraid to say you don't understand, and remember remember remember there is an end to the process...its a marathon and you'll get there."

We know that we are half way through this marathon for Roger. We know he's doing well all things considered. We know that we have the continued love and support of you, our family and friends, to help pull us through this. We can't wait to get to the finish line and celebrate to with all of you.

He's snoring again. Its time for me to join him. All our love, A&R

Its a roller coaster ride

This journey called cancer is a roller coaster ride fraught with every emotion imaginable under the sun. You gotta enjoy the highs while you can because a low will be soon to follow. I offer that as a descriptor but fear that it may be a little melodramatic as today was a good day. Roger felt better than he has for several weeks. And, we didn't need to go to the hospital for fluids. We anticipate that we will be going into the hospital tomorrow for fluids as a precautionary measure. One low part of the roller coaster ride is Roger's energy level. He is good for short spurts of doing something or staying upright. After a couple hours, he's ready for a nap or at least has to sit down. He is easily winded - but at least we know to anticipate it. Its a little unsettling because its just not like Roger to need naps or have to sit down if he gets winded. I have to remind myself that this is temporary.

Today's issues (though much less than previous days) continues to be sores on his tongue, a swollen tongue and pain in the esophagus. He's able to take a couple different medications that help numb the area and kill pain for a short period of time. Roger has found that if he can take at least one of these medications a few minutes before trying to eat, he is able to eat or drink a little. He's still not getting the necessary 5000 calories and not getting the 15-17 units (8 grams per unit) of protein. We anticipate that the he has another handful of days with these symptoms...

Roger is finally sleeping much better. He made this upholstered piece that attaches to the bed and essentially creates a "corner" with an arm rest for him to sleep upright against with 5-6 pillows wedged around him. He said that its much better than trying to sleep in the lazyboy chairs (which we did during the week when he was choking as he slept). Fortunately Roger is so creative and incredibly talented that he was able to whip out this piece which fits with the bed and is hardly noticeable. He is hoping this will work after he has surgery. I think that we may need to rent a hospital bed that can elevate the head or feet of the bed. He rolls his eyes when I make this suggestion. We'll do whatever we need to do.

Speaking of the surgery...we do not have a set date yet for the surgery. Its our expectation that it will be sometime the week of November 5. Since Thanksgiving is a couple weeks later, we anticipate that the surgeon may not want to have a patient with possible needs in the hospital recovering close to the holiday. I'll post the date as soon as we know.

We feel like junior old people...eating early....going to bed early....needing naps....eye sight going....and wrinkles. :-) And speaking of going to bed early. My handsome hubby is snoring in the lazyboy across from me. Its time to nudge him awake and get him up to bed. We need to steal sleep whenever we get a chance.

More soon~ love, A

No more chemo. No more radiation.

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

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

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

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

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

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

Love, A&R

A little silliness never hurt anyone

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

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


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

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

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

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

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

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

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

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