Friday morning as we were leaving the pain doctor's office we received a call from the spa I referenced in my prior post. The woman who called said she and the spa wanted to offer complimentary massage services to Roger and me as often as we would like. I went from zero to full tears in nothing flat. As the tears poured down my face, I expressed our sincerest gratitude for the kindness they showed us on Thursday and said we couldn't possibly accept this tremendous offer. She stopped me mid-stream and said "We insist. This is our small way of offering help. We know bad things happen to good people. Please let us do this for you. Let me book an appointment for you now." The thought of this exceptionally kind and generous offer still moves us both to tears. (there seems to be a lot of that lately). Roger asked me as I hung up the phone with the spa, "why would they do that? it doesn't make any sense." All I could respond was, "maybe they see the kindness aura you radiate and they want to reciprocate".
Trip to pain doctor didn't net any real fixes. We are amping up Roger's pain meds to see if we can at least get it under control. We've ordered yet another new version of the spray pain-killer hoping it might help. Unfortuantely it doesn't come in (special order) until Tuesday. Nothing seems to be working at the moment - so we'll try this new version of delivery. If we don't notice an appreciable difference, then we will go back and try again. As you can imagine, after weeks of piercing pain, his disposition isnt fairing so well. He is exhausted from trying to deal with the pain which means he is sleeping more...or at least is trying. The pain keeps waking him. This afternoon, he spent move of the afternoon and evening shifting in his recliner - trying to find a comfortable position. Around 6pm he went upstairs to lay down to see if that would help. I checked in about a couple times. Still couldn't find a peaceful, comfortable moment. So, I ran a bath and he is soaking upstairs now, as I type.
We tried another massage therapist this morning to see if we can continue to get the kinks. She used to have a studio in Broad Ripple but moved downtown. I loaded Roger and a bag of magazines for me into the car and drove us downtown. This time he had an hour massage. He said he seemed to help for the next 30 min following the massage. As the day worn on, the magic effects of the massage wore off. We're going to try to work in massages for him on a more regular basis. Though I try to rub and massage the kinks out of Roger on a daily basis, there just isn't anything like the touch of an educated therapist.
Hoping for slightly cooler temperatures tomorrow. Not sure that we are going to get any kind of break. We're both happy to see the rain (as is our grass) but could do without all the heat+humidity. Can you say "sauna". Also, hoping to get Roger out on a small walk. Trying to stave off his muscles atrophying any further.
Have a great weekend. xoxoxo, a & r
Saturday, June 30, 2012
Thursday, June 28, 2012
Random acts of kindness
We have often been the beneficiary of random acts of kindness from strangers. Lately, more so than ever. Today we witnessed two such events which left us in tears and rendered us speechless and a third happened earlier in the week.
The first act of kindness occurred over the noon hour. Roger had a follow up appointment with Dr Youkilis, the Ear Nose Throat doctor who did the procedure 2 weeks ago. The doctor was following up to hear the strength of Roger's voice, his ability to swallow, etc. Unfortunately, we were all disappointed with the results. While still better than before the procedure, the results are weaker than what Roger had the first couple days following the procedure. The doctor offered up he could do the procedure again to add more substance to Roger's paralyzed vocal cord. The risk is going under more anesthesia and the other risk is over filling the vocal cord and closing off Roger's windpipe. He said he still didn't believe either to be an issue. We then got into quality of life and time lines which ended with Roger in tears, me in tears and remarkably enough the doctor in tears. He closed the personal space and move next to Roger and put his arm around him. While wiping away tears he said he is headed to Israel on a family trip and is going to the Wailing Wall. He had planned on offering a prayer for us and wanted us to know. He then gently held the back of Roger's head as the tears fell. Really a remarkable, very human moment dressed in human kindness.
Late this afternoon/early evening, I took Roger to an appointment with a masssage therapist. When I made the appointment, I shared with the therapist Roger's frail condition and his piercing pain from the issues with his back. I explained he had limitations on his ability to lay flat and that he may need to sit in a massage chair. Beth, the therapist, listened as we both explained his various physiological challenges. She quietly ushered him off to a room. After the session, we headed up to the reception desk to pay. The receptionist looked at us and said, "your services have been taken care of." I immediately welled up with tears. Roger looked befuddled (he's a massage virgin). So he pressed and said, "no, we haven't paid yet. We need to pay". The receptionist repeated herself "the services have been taken care of." . The tears meanwhile had pooled up for me and were silently trickling down my face. I said to him "honey, its been taken care of" and the receptionist added, "your services are complimentary". As we walked out to the car, Roger was shaking his head as it dawned on him that this woman gave him the gift of her services. We both climbed into the car with emotions openly flowing and the tears trickling down our faces. As we were driving home, I was trying to stay focused on the road and not be overwhelmed by the day when Roger shared the following while staring out the window, "Was it too much for me to strip naked for the massage?" (it was a massage on his back ONLY)....I burst out laughing and said no, of course not. He responded, " no wonder she wouldn't talk to me or look at me...no naked, huh?" The massage helped temporarily. Within 15 minutes of leaving the spa, the pain was creeping back.
The third moment of kindness came early this week. My mom, dad, and I gave Roger and my brother, Alan, gift certificates for Christmas to take a ride in a 2-seater Indy car around the Indpls Motor Speedway. We had the drive previously scheduled earlier in May but Roger wasn't physically up for doing the ride. So, after rescheduling we finally went. We checked wiht Roger's doctors to make sure they thought it would be ok. The general sensus was yes, should be no problem. Additionally, if, god forbid something happened, they added "what better way to go then speeding around the track - especially for you Roger". We both agreed with the sentiment even if a little "off"". We screwed up our courage and made our way to the track. All of us - Roger, me, my parents (who came) my brother, and our friends Paul and Bill (who also came) - all of us were nervous about the ride. It was only 3 laps but the speed could get up to 140-150 miles per hour and have extreme G-force impact. I'm including a couple photos of Roger and my brother Alan. They both suited up and got in line. the closer Roger got to the front of the line, the more anxious/nervous I got. As he climbed into the car, I found my hands shaking and again, those stupid tears flowing down my face. Had Roger been well, he would have been consumed with excitement. Frail Roger was very nervous. Roger's car was the first to go out followed by my brother's car. When they pulled back into the pits, (I was taking tons of pictures), the ride coordinator must have been able to tell Roger is very sick, maybe he saw my emotion...anyway, he invited me over the pit wall to take a photo of Alan and Roger trackside with the car behind them and the timing tower in the far distance. (third act of kindness) The coordinator got the long-eye from one of the safety guys for letting me "over the wall" (I was wearing shorts and flip flops....big no no on pit lane). Happy ending: Roger said he had a blast and had a genuine smile on his face...first I've seen in a long long time. The price paid was later when Roger's bones and muscles screamed from being tossed around inside the car. 
Tomorrow marks an appointment with Roger's pain doctor, Dr. Ratzman. I have a
feeling we will be stepping up the pain meds considerably. We've already done a little of that ourselves. NOTHING seems to help. He hasn't gotten a moment of relief in over a week. I know he's at his wits end with the continued pain. Hopefully the good doctor will be able to up the meds or prescribe something new. Morphine is NOT an option for Roger. It makes him C*R*A*Z*Y. But we gotta find a way to get the pain under control! He is miserable and it only adds to his exhaustion. The ENT doctor asked if the pain could be related to cancer spreading to Roger's bones. WHAT??? I hadn't even thought of that. You've got to be kidding. It can't possibly have spread again. No no no no no. I hate cancer. Completely hate it.
Would that we all could share random acts of kindness with a stranger. If the moment strikes you, pass it forward when you have an opportunity. xxooxx, a & r
Tuesday, June 26, 2012
I've never been much of a juggler. Not very coordinated on this end. I like to pretend I have grace and coordination....um, its all a roose. Fortunately I'm not juggling eggs, no china plates, no bowling pins or juggling pins. Just been trying to juggle calendars and appoitnments. Juggling Roger's calendar, my calendar - home, personal, work, etc Suffice to say, per my prior statement, good thing I'm not juggling anything like eggs or china. It would NOT be pretty.
As I sit here yawning while entering his post, Roger is dozing on and off across from me. Next to him is his IV pole and on it are two bags of hydration - one with a salt solution and the other with a sugar solution. We started the drip at 8:00. I anticipate we won't finish until closer to midnight. A necessary evil. He does much much better when he is NOT dehydrated. So we infuse when we can. Should've started earlier....shouldda wouldda couldda. Oh well. Whats a little more exhaustion.
Roger has had a couple very rough nights. He has another new pain this time in his back. The pain is in his right shoulder blade area and now has also spread to his left shoulder blade. He describes it as an ice pick in his back. No amount of baths, heating pads, ice packs, angie-massages, or even prescribed pain killer - nothing seems to help alleviate the pain. He can go to bed heavily influenced by Ambien but wakes around 2:00 with terrific pain. So we shift his pillows around him and the bed, he takes more pain killer and tries to sleep. We have also tried moving him to the recliner in the room. NOTHING seems to alleviate the pain. Fortunately we have an appt this Thursday with the pain doctor. (back to my inability to juggle....we are double booked for doctors' appts on Thurs...aslo supposed to meet with the ear nose throat doc too....aint I awesome with juggling??). Hoping. Desparately hoping the pain doc will have an idea. In the meantime, trying to get Roger in to see a massage therapist to see if she/he (Roger would prefer a she...go figure) can help.
Thats all I've got for now. Need to get the bandages etc ready for when I disconnect the fluids from Roger. Will try to report back tomorrow with a fun thing we did. It was laced with all kinds of fear and apprehension but it was truly an awesome moment. But for now, I need to do a couple thing before I disconnect Roger from the fluids. Good night to all. Sending you our love through the wires. a & r
As I sit here yawning while entering his post, Roger is dozing on and off across from me. Next to him is his IV pole and on it are two bags of hydration - one with a salt solution and the other with a sugar solution. We started the drip at 8:00. I anticipate we won't finish until closer to midnight. A necessary evil. He does much much better when he is NOT dehydrated. So we infuse when we can. Should've started earlier....shouldda wouldda couldda. Oh well. Whats a little more exhaustion.
Roger has had a couple very rough nights. He has another new pain this time in his back. The pain is in his right shoulder blade area and now has also spread to his left shoulder blade. He describes it as an ice pick in his back. No amount of baths, heating pads, ice packs, angie-massages, or even prescribed pain killer - nothing seems to help alleviate the pain. He can go to bed heavily influenced by Ambien but wakes around 2:00 with terrific pain. So we shift his pillows around him and the bed, he takes more pain killer and tries to sleep. We have also tried moving him to the recliner in the room. NOTHING seems to alleviate the pain. Fortunately we have an appt this Thursday with the pain doctor. (back to my inability to juggle....we are double booked for doctors' appts on Thurs...aslo supposed to meet with the ear nose throat doc too....aint I awesome with juggling??). Hoping. Desparately hoping the pain doc will have an idea. In the meantime, trying to get Roger in to see a massage therapist to see if she/he (Roger would prefer a she...go figure) can help.
Thats all I've got for now. Need to get the bandages etc ready for when I disconnect the fluids from Roger. Will try to report back tomorrow with a fun thing we did. It was laced with all kinds of fear and apprehension but it was truly an awesome moment. But for now, I need to do a couple thing before I disconnect Roger from the fluids. Good night to all. Sending you our love through the wires. a & r
Sunday, June 24, 2012
Are weekends ever restful? I'm guessing no matter who you are or where you are, weekends are probably busy with yard work, house work, shuttling kids, etc. Ours are pretty busy as well.
Happy to report yet another "thing" is crossed off the list of things to sell. Thanks to Paul and his magic ebay efforts, the 1973 BMW 2002 is gone! We had to go to our rental where Roger had all the parts and pieces stored. He had previously disassembled the whole thing with the goal of rebuilding it into a vintage race car to take racing. Unfortunately, he wasn't able to get back to that project. So, today Paul, Roger and I headed over to the garage and started pulling pieces. Roger was the official supervisor. I was the grunt and Paul got to do all the heavy, dirty lifting. After Paul crawled around in the garage attic and handed pieces and parts down to me, we finally had a heap of car in the middle of the garage. The guy who bought the car had/has a lot in common with Roger. Both big into racing, both did fabrication, and a lot of other stuff. The buyer plans to turn it into...a vintage race car! How awesome is that??? Felt like we were sending the car off to a good home. Once the guy had everything loaded up he shook hands with Paul and then shook hands with Roger accompanied by a big bear hug (the guy was huge!). it was a really sweet gesture and touched Roger. A nice way to cross something off the list.
Well with all this crossing off the list, you should be anticipating we are adding to the list or rather creating a NEW list. Roger wants to get a new car. And, as you can well imagine....he isn't looking for something ordinary. Nooooo, no everyday car for him. No Ford Focus. No Volkswagen Jetta. Hell, no Porche 911....Roger, aka James Bond Jr, has decided he wants an Aston Martin. Again, nothing ordinary for our Roger. If not that, then possibly a BMW 625. I'm guessing the Aston Martin is going to win out. The one nice thing about this little adventure is that Roger has spent the last couple evenings and part of the day searching the Internet for listings which means he isnt staring mindlessly at the television. He does a lot of zombie-like focus on the TV.
Health update: it looks like Roger *did* break a bone in his foot. A small hairline fracture. Naturally it took us 2 weeks to go into the ortho doctor. The doctor gave us the long eye and said with a non-cancer patient he would collect the office visit fee and send the patient on his/her way because it had been 2 weeks since the original injury and there was no further damage. Since Roger's system/bones/whole being is sooooo fragile, the doctor thought it would be wise to give Roger a "boot" to prevent any further breakage. There were a few minutes spent between the doctor and Roger about shoes Roger could wear instead of the boot. Basically anything with a hard stable sole...not the flipflops Roger was then wearing. Roger said he had a pair which seemed to provide good support but didnt wear them because they didn't go with his outfit. The doctor looked at him sideways and said "you mean to tell me fashion won over function/form?" Roger nodded yes back. Meanwhile I watched the scene unveil as the doctor took in Mr. Fashion's outfit du jour - baggy, wrinkled shorts with a bright bumble bee yellow shirt with the collar turned all cattywhompus. High fashion? No. The new boot is now thrown in the corner of the family room and hasn't been worn since last week. Instead Mr. Fashion Plate is foregoing fashion and is now wearing his stable shoes.
Roger has been feeling crummy lately. Tired, headaches, and new pains possibly pinched nerves around his right and left shoulder blades. The left shoulder blade pain is new this afternoon. The right shoulder blade pain has been with him for a week or so. The pain was pretty terrific this morning so much so, it woke him from his sleep at 4:00am. He finally gave up and got up at 5:00 to take a bath. The bath seemed to help a little. I've tried messaging the shoulder blade area(s). He says it helps but its temporary. So, I've added more padding to his side of the bed and have set up the recliner in the bedroom with extra pillows (in case he wants to sit up) all in hopes of getting him comfortable to sleep the night through as much as possible.
We're still doing fluids at home. Every other day a large bag of salt water and a small bag of sugar water ( they have fancy names, but that's what the stuff is without the fancy name). It definitely seems to help him stay hydrated which is good for his blood pressure and generally helps prevent him from feeling worse. We did fluids Saturday evening. My folks had stopped by for a visit. We all sat in the back courtyard and chatted away, Roger with his IV pole next to him and the fluid flowing into his system through his port. When it was time for them to leave, we walked them out. Roger hung back at the gate to the back yard with his iv pole in tow. Mom, Dad and I turned back to see Roger standing under a tree next to one of my hummingbird feeders. Dad asked him if he was a bird feeder himself at which point Roger stuck out his finger as though creating a perch for a passing bird. Made us all laugh...he really did look like a skinny tree with bird perches.
Hope your weekend was a good one and that your yards and gardens are hanging on. Its been a hot dry summer so far!
hugs, a & r
Happy to report yet another "thing" is crossed off the list of things to sell. Thanks to Paul and his magic ebay efforts, the 1973 BMW 2002 is gone! We had to go to our rental where Roger had all the parts and pieces stored. He had previously disassembled the whole thing with the goal of rebuilding it into a vintage race car to take racing. Unfortunately, he wasn't able to get back to that project. So, today Paul, Roger and I headed over to the garage and started pulling pieces. Roger was the official supervisor. I was the grunt and Paul got to do all the heavy, dirty lifting. After Paul crawled around in the garage attic and handed pieces and parts down to me, we finally had a heap of car in the middle of the garage. The guy who bought the car had/has a lot in common with Roger. Both big into racing, both did fabrication, and a lot of other stuff. The buyer plans to turn it into...a vintage race car! How awesome is that??? Felt like we were sending the car off to a good home. Once the guy had everything loaded up he shook hands with Paul and then shook hands with Roger accompanied by a big bear hug (the guy was huge!). it was a really sweet gesture and touched Roger. A nice way to cross something off the list.
Well with all this crossing off the list, you should be anticipating we are adding to the list or rather creating a NEW list. Roger wants to get a new car. And, as you can well imagine....he isn't looking for something ordinary. Nooooo, no everyday car for him. No Ford Focus. No Volkswagen Jetta. Hell, no Porche 911....Roger, aka James Bond Jr, has decided he wants an Aston Martin. Again, nothing ordinary for our Roger. If not that, then possibly a BMW 625. I'm guessing the Aston Martin is going to win out. The one nice thing about this little adventure is that Roger has spent the last couple evenings and part of the day searching the Internet for listings which means he isnt staring mindlessly at the television. He does a lot of zombie-like focus on the TV.
Health update: it looks like Roger *did* break a bone in his foot. A small hairline fracture. Naturally it took us 2 weeks to go into the ortho doctor. The doctor gave us the long eye and said with a non-cancer patient he would collect the office visit fee and send the patient on his/her way because it had been 2 weeks since the original injury and there was no further damage. Since Roger's system/bones/whole being is sooooo fragile, the doctor thought it would be wise to give Roger a "boot" to prevent any further breakage. There were a few minutes spent between the doctor and Roger about shoes Roger could wear instead of the boot. Basically anything with a hard stable sole...not the flipflops Roger was then wearing. Roger said he had a pair which seemed to provide good support but didnt wear them because they didn't go with his outfit. The doctor looked at him sideways and said "you mean to tell me fashion won over function/form?" Roger nodded yes back. Meanwhile I watched the scene unveil as the doctor took in Mr. Fashion's outfit du jour - baggy, wrinkled shorts with a bright bumble bee yellow shirt with the collar turned all cattywhompus. High fashion? No. The new boot is now thrown in the corner of the family room and hasn't been worn since last week. Instead Mr. Fashion Plate is foregoing fashion and is now wearing his stable shoes.
Roger has been feeling crummy lately. Tired, headaches, and new pains possibly pinched nerves around his right and left shoulder blades. The left shoulder blade pain is new this afternoon. The right shoulder blade pain has been with him for a week or so. The pain was pretty terrific this morning so much so, it woke him from his sleep at 4:00am. He finally gave up and got up at 5:00 to take a bath. The bath seemed to help a little. I've tried messaging the shoulder blade area(s). He says it helps but its temporary. So, I've added more padding to his side of the bed and have set up the recliner in the bedroom with extra pillows (in case he wants to sit up) all in hopes of getting him comfortable to sleep the night through as much as possible.
We're still doing fluids at home. Every other day a large bag of salt water and a small bag of sugar water ( they have fancy names, but that's what the stuff is without the fancy name). It definitely seems to help him stay hydrated which is good for his blood pressure and generally helps prevent him from feeling worse. We did fluids Saturday evening. My folks had stopped by for a visit. We all sat in the back courtyard and chatted away, Roger with his IV pole next to him and the fluid flowing into his system through his port. When it was time for them to leave, we walked them out. Roger hung back at the gate to the back yard with his iv pole in tow. Mom, Dad and I turned back to see Roger standing under a tree next to one of my hummingbird feeders. Dad asked him if he was a bird feeder himself at which point Roger stuck out his finger as though creating a perch for a passing bird. Made us all laugh...he really did look like a skinny tree with bird perches.
Hope your weekend was a good one and that your yards and gardens are hanging on. Its been a hot dry summer so far!
hugs, a & r
Wednesday, June 20, 2012
As you can imagine, we do a lot of thinking on this end. Thinking about little stupid stuff: what to buy at the grocery, will it be stinking hot today, will anything good be on tv tonight. Thinking about big big stuff like living with cancer and ALL the thoughts tortured, sad, difficult, academic, etc that come with it.
In this post tonight, I want to ask you to reflect on the day you just had, the previous day, or for that matter the past week you've had. Stop for a moment and think about all the plans you made for the coming day, for the coming week, or the coming fall. Think of all those plans, from something as simple as what patio furniture should you buy, to where should you go for vacation, to what your next job will be, to when and what you will do when you retire. Now, think of those persons or person part of that decision. That person you consult and say "hey, do you think we should buy this? or do you think we should do that? or what do you think?" Then, as many of you have already jumped to this next part of the decision tree, then, think of going through this process with your person who has been weighed down with the impossible weight of cancer - any cancer - let alone terminal cancer. WHAT do you do with these stupid stupid questions? I honestly don't know.
We - Roger and I - try to live in the moment. In the here and now, but it is truly impossible to not have questions, thoughts, etc which deal with the future. And again, I ask you HOW do you do that? Until recently, I'd like to think we.... I ... have been relatively good at the here and now and have avoided those ridiculous thoughts, plans, etc. relative to the future. That is NOT to say we abandon hope for the future. You can't give up hope. Ever. Never. But the here and now is tangible and grasp-able. Roger tried to engage me in a conversation about the future and what it meant for me - in this case work related - and I simply could * not * do * it *. I can speak before thousands of people. I can do all the girl-jobs and boy-jobs in the house. I can deal with spiders (HATE IT AND WILL SCREAM WHEN I DO IT). I can dig deep and find some sort of nurturing, caregiver, maternal-type of instinct in me (it aint natural). I can get over my absolute queasiness to blood. And, I can slay sooooo many monsters and demons which threaten my husband and me. But I simply cannot, cannot talk about the future. Just can't.
I will never stop thinking of this journey with cancer as reality being suspended. Looming above our heads like a razor sharp sword. Waiting to drop. Ohgoodgod, I sound soooooooooo dramatic. blah blah blah. Not the intention. I'm sure you hear some sort of dramatic, cheesy movie music playing in your heads as you wait for the "CRASH BOOM" moment. No crash-boom moment. Just a whole bunch of emotions and thoughts floating around in the air.
We're headed to an orthopedic doctor tomorrow to figure out whats going on with Roger's foot. Sounds like a possible broken bone in his foot. Most probably due to the "treatment" for cancer. All these crazy, barbaric cancer "treatments" have potential ancillary side effects to the human body. Brittle bones is one of many for Roger. Crazy stuff. All in the pursuit of getting better....getting well....
Any whooooooo. Sorry for all the blah blah blah. We promised ourselves (Roger made me promise him) we would always be honest in our blog. Part of the honesty is sharing some of this blah blah blah stuff.
Gotta go. We have Roger hooked up to hydration fluids tonight. He is almost done. So, gotta disconnect the fluids and flush his lines and then usher him off to bed. A favorite moment moment for me is snuggling up behind him and wrapping my arms around him as he falls deep asleep. ~ a
In this post tonight, I want to ask you to reflect on the day you just had, the previous day, or for that matter the past week you've had. Stop for a moment and think about all the plans you made for the coming day, for the coming week, or the coming fall. Think of all those plans, from something as simple as what patio furniture should you buy, to where should you go for vacation, to what your next job will be, to when and what you will do when you retire. Now, think of those persons or person part of that decision. That person you consult and say "hey, do you think we should buy this? or do you think we should do that? or what do you think?" Then, as many of you have already jumped to this next part of the decision tree, then, think of going through this process with your person who has been weighed down with the impossible weight of cancer - any cancer - let alone terminal cancer. WHAT do you do with these stupid stupid questions? I honestly don't know.
We - Roger and I - try to live in the moment. In the here and now, but it is truly impossible to not have questions, thoughts, etc which deal with the future. And again, I ask you HOW do you do that? Until recently, I'd like to think we.... I ... have been relatively good at the here and now and have avoided those ridiculous thoughts, plans, etc. relative to the future. That is NOT to say we abandon hope for the future. You can't give up hope. Ever. Never. But the here and now is tangible and grasp-able. Roger tried to engage me in a conversation about the future and what it meant for me - in this case work related - and I simply could * not * do * it *. I can speak before thousands of people. I can do all the girl-jobs and boy-jobs in the house. I can deal with spiders (HATE IT AND WILL SCREAM WHEN I DO IT). I can dig deep and find some sort of nurturing, caregiver, maternal-type of instinct in me (it aint natural). I can get over my absolute queasiness to blood. And, I can slay sooooo many monsters and demons which threaten my husband and me. But I simply cannot, cannot talk about the future. Just can't.
I will never stop thinking of this journey with cancer as reality being suspended. Looming above our heads like a razor sharp sword. Waiting to drop. Ohgoodgod, I sound soooooooooo dramatic. blah blah blah. Not the intention. I'm sure you hear some sort of dramatic, cheesy movie music playing in your heads as you wait for the "CRASH BOOM" moment. No crash-boom moment. Just a whole bunch of emotions and thoughts floating around in the air.
We're headed to an orthopedic doctor tomorrow to figure out whats going on with Roger's foot. Sounds like a possible broken bone in his foot. Most probably due to the "treatment" for cancer. All these crazy, barbaric cancer "treatments" have potential ancillary side effects to the human body. Brittle bones is one of many for Roger. Crazy stuff. All in the pursuit of getting better....getting well....
Any whooooooo. Sorry for all the blah blah blah. We promised ourselves (Roger made me promise him) we would always be honest in our blog. Part of the honesty is sharing some of this blah blah blah stuff.
Gotta go. We have Roger hooked up to hydration fluids tonight. He is almost done. So, gotta disconnect the fluids and flush his lines and then usher him off to bed. A favorite moment moment for me is snuggling up behind him and wrapping my arms around him as he falls deep asleep. ~ a
Monday, June 18, 2012
I am normally such a chatty person. Never usually at much of a loss for words. The past several days have simply left me without words. That's not to say I am or was speechless, just missing the words to blog. I guess the weight of reality has been riding heavy on our shoulders.
Roger has been riding the roller coaster we know as his health or well being. There have been a few days when he felt like his swallowing was improved from the procedure last Tuesday. Today and yesterday he has been complaining that swallowing is getting difficult again. His voice is still stronger than it was prior to the procedure. However, if you are not facing Roger when he is talking, i.e. he is walking away, you won't be able to hear him. Several times today I've had to say "hey, if you're talking to me, please turn this direction or don't walk away". The ear nose throat doctor said it would be two weeks before we knew the true results of the procedure. So neither of us are jumping to conclusions for another week. We meet with the ENT doctor on the 28th. So, time will tell. Quality of life. Quality of life.
Today, we met with Roger's oncologist Dr. Birhirray. It was his "regular" 6 week appointment. More of a touching base. We reported Roger has been experiencing more headaches over the last couple weeks. The doctor said he would schedule another MRI before the next appointment 6 weeks from now. We also reported Roger thinks he may have broken a bone in his foot. A week or so ago he had a misstep walking down a step outside. Immediately he had pain. So, I think he will have another doctor's appt with an orthopedic doctor. Hoping to get a boot to stabilize his foot. Poor guy. First the cancer, then his gallbladder, then his voice/paralyzed vocal cord, and now his lame wing. All and all I have to say he has keep his spirits relatively even keel. Don't get me wrong, he isn't singing ZippideeDooDa but he also isn't holed up under the bed rolled up in a ball.
Home health care nurse came today. She accessed Roger's port for us. We will leave him accessed all week and I will infuse him with hydration every other day for three treatments and then I will pull the needle. The plan is to have the nurse come once a week to access his port and then we infuse fluids at home.
Roger has been snoozing most of the afternoon. We find we both get twisty with nerves and anxiousness prior to these various doctors' appointments. You see we no sooner get done with one doctor's appointment and then relax when another doctor's appointment is just around the corner or worse yet another big test like an MRI. We know the drill and also know our short tempers or lack of conversation are merely a manifestation of those nerves.
Fathers day was good. My parents came over early evening. Roger decided hotdogs (really??? hotdogs??) sounded good. So, we "treated" my dad to a deluxe dinner of hotdogs roasted over our fire pit. Yep....it was 92 degrees outside and Roger decided it would be good to roast the dogs over the fire. My dad was so thrilled Roger thought something sounded good to eat that Dad thought it sounded good...HOTDOGS???? So we had grilled hotdogs, Italian sausage, chili sauce and cheese for the dogs. Deeeeeelux. We're gonna win an award for best father's day ever. :-) Actually I think we all had a perfectly delightful father's day even if we were eating miscellaneous pig and cow parts.
While on the food theme, Roger's appetite as of late (not really an appetite but what he is willing to try to eat)....Steak n Shake breakfast sandwiches, Dairy Queen hotdogs, Dairy Queen icecream, Applebee's Riblets, my neighbor across the street's chicken noodles, and peanut butter and jelly sandwiches. If you can't tell...there is NO predicting what will sound good one day to the next. I always have to laugh when someone asks," what food can I bring over for Roger?" I really can never answer the question because it varies by the day by the hour.
Roger expressed interest in going down to my parents' river house going forward. I didn't know whether or not he would be interested in going in light of the boat being sold but I think he finds it peaceful and a change of pace. So, we are planning on going down as much as we possibly can.
Just wanted to drop you a quick note to say hi and give you an update. I've been busy trying to put away or identify items to donate which we have pulled off the boat. All of the linens and clothing need to be washed because they were stored on a diesel boat which leaves a strong scent of diesel. Not particularly attractive. Literally, I've been doing laundry for DAYS. And, as I've mentioned before....I ain't no domestic goddess....so this is sheer TORTURE.
Take care of yourselves. xxooxx, a & r
Roger has been riding the roller coaster we know as his health or well being. There have been a few days when he felt like his swallowing was improved from the procedure last Tuesday. Today and yesterday he has been complaining that swallowing is getting difficult again. His voice is still stronger than it was prior to the procedure. However, if you are not facing Roger when he is talking, i.e. he is walking away, you won't be able to hear him. Several times today I've had to say "hey, if you're talking to me, please turn this direction or don't walk away". The ear nose throat doctor said it would be two weeks before we knew the true results of the procedure. So neither of us are jumping to conclusions for another week. We meet with the ENT doctor on the 28th. So, time will tell. Quality of life. Quality of life.
Today, we met with Roger's oncologist Dr. Birhirray. It was his "regular" 6 week appointment. More of a touching base. We reported Roger has been experiencing more headaches over the last couple weeks. The doctor said he would schedule another MRI before the next appointment 6 weeks from now. We also reported Roger thinks he may have broken a bone in his foot. A week or so ago he had a misstep walking down a step outside. Immediately he had pain. So, I think he will have another doctor's appt with an orthopedic doctor. Hoping to get a boot to stabilize his foot. Poor guy. First the cancer, then his gallbladder, then his voice/paralyzed vocal cord, and now his lame wing. All and all I have to say he has keep his spirits relatively even keel. Don't get me wrong, he isn't singing ZippideeDooDa but he also isn't holed up under the bed rolled up in a ball.
Home health care nurse came today. She accessed Roger's port for us. We will leave him accessed all week and I will infuse him with hydration every other day for three treatments and then I will pull the needle. The plan is to have the nurse come once a week to access his port and then we infuse fluids at home.
Roger has been snoozing most of the afternoon. We find we both get twisty with nerves and anxiousness prior to these various doctors' appointments. You see we no sooner get done with one doctor's appointment and then relax when another doctor's appointment is just around the corner or worse yet another big test like an MRI. We know the drill and also know our short tempers or lack of conversation are merely a manifestation of those nerves.
Fathers day was good. My parents came over early evening. Roger decided hotdogs (really??? hotdogs??) sounded good. So, we "treated" my dad to a deluxe dinner of hotdogs roasted over our fire pit. Yep....it was 92 degrees outside and Roger decided it would be good to roast the dogs over the fire. My dad was so thrilled Roger thought something sounded good to eat that Dad thought it sounded good...HOTDOGS???? So we had grilled hotdogs, Italian sausage, chili sauce and cheese for the dogs. Deeeeeelux. We're gonna win an award for best father's day ever. :-) Actually I think we all had a perfectly delightful father's day even if we were eating miscellaneous pig and cow parts.
While on the food theme, Roger's appetite as of late (not really an appetite but what he is willing to try to eat)....Steak n Shake breakfast sandwiches, Dairy Queen hotdogs, Dairy Queen icecream, Applebee's Riblets, my neighbor across the street's chicken noodles, and peanut butter and jelly sandwiches. If you can't tell...there is NO predicting what will sound good one day to the next. I always have to laugh when someone asks," what food can I bring over for Roger?" I really can never answer the question because it varies by the day by the hour.
Roger expressed interest in going down to my parents' river house going forward. I didn't know whether or not he would be interested in going in light of the boat being sold but I think he finds it peaceful and a change of pace. So, we are planning on going down as much as we possibly can.
Just wanted to drop you a quick note to say hi and give you an update. I've been busy trying to put away or identify items to donate which we have pulled off the boat. All of the linens and clothing need to be washed because they were stored on a diesel boat which leaves a strong scent of diesel. Not particularly attractive. Literally, I've been doing laundry for DAYS. And, as I've mentioned before....I ain't no domestic goddess....so this is sheer TORTURE.
Take care of yourselves. xxooxx, a & r
Wednesday, June 13, 2012
Today, we finished a chapter. We sold our boat. I don't mean to sound so melodramatic. I mean, really, its just a boat. But the boat represented a lot of memories and also represents yet another thing Roger isn't able to do any more due to his failing health. And, it simply makes us both heartsick. We did the sea trial with the buyer and his friend (turns out to be co-buyer). Had a few last minute discussions regarding price but collected the balance of the original amount negotiated. Roger's friend and business partner Russ was with us. He brought a friend with him as well. So after we finalized the deal, the buyers left us to have a little quiet time on the boat. Russ, his fr
iend Dick and I had a beer. Roger sipped his water. And then, we collected our remaining items, closed up the boat and made our way down the dock. Roger and I both had tears trickle down. I know. HOW silly...its just "stuff"...but for us, again it represented the close of another chapter.
iend Dick and I had a beer. Roger sipped his water. And then, we collected our remaining items, closed up the boat and made our way down the dock. Roger and I both had tears trickle down. I know. HOW silly...its just "stuff"...but for us, again it represented the close of another chapter. Tonight has proven out to be an emotional evening. I think we both have felt a pretty strong under tow of emotions and stress. Roger piercing pain in his head this evening which emotionally just proved to be too much. As I crawled onto his lap and held onto him, I explained that maybe, just maybe the past couple days of feeling bad might be due to the stress of the vocal cord procedure and then the stress of selling the boat. He reflected for a minute, took a deep breath and said, "you're probably right. Just a lot to deal with". He's been napping on and off most of the afternoon/evening.
All and all relative to how he was doing before the procedure yesterday, Roger seems to be doing well. Swallowing is still good. Today he has been speaking a little and sounds much better than he has in weeks!! I've noticed improvement from this morning compared to this evening. Am hoping each day brings more improvement. I joke with him that I'll be happy to have his voice back so that he can make his own calls and appts and I can stop being his secretary...truth is, I just love the sound of his voice...even if he's driving me crazy with one of his Roger-isms.
Anyway, that's what I've got for you tonight. Headed back to Indy early tomorrow morning. I have a client meeting so I need to be back. We both are looking forward to not having to go anywhere once we get home for a while.
Sending hugs your way. Enjoy each chapter of your respective book and don't try to rush to the next chapter. Savor each one. love, a & r
Tuesday, June 12, 2012
Never enough time. Never enough energy
I haven't had the words to post. Just overwhelmed with life. Trying to get all our ducks in a row to sell the boat, get ready for Roger's procedure, get signed up for home delivery of hydration supplies to infuse Roger at home, schedule and reschedule Roger's doctors appts, AND act as Roger's voice for calls, etc as well as handle my own. Whew. Pooped.
I simply don't have the steam to do a full post tonight (sorry sorry, I am long overdue).
Most important thing: Roger's outpatient procedure appears to have gone well today. The actual procedure took maybe 15 minutes. We got home and Roger snoozed for most of the afternoon. Late this afternoon he wrote a note for me to update how he felt. He's NOT supposed to talk today and is supposed to talk on a very very limited basis tomorrow and then slowly ramp up his speaking. So, if you're calling for Roger...you're probably gonna get me. Anyway, he said in his note he noticed a positive difference in his ability to drink. YEA!!! A very good thing. He has been choking when he swallows water and any liquid. So this is a very good thing.
I hate to say this but I really gotta go. Meeting with the boat buyer tomorrow to close the deal and trying to do work work as well. ....just not enough hours in the day.
more soon. Apologies for typos and wrong words and poorly formed sentences. My brain will ....may....eventually return. hugs to all. a & r
I simply don't have the steam to do a full post tonight (sorry sorry, I am long overdue).
Most important thing: Roger's outpatient procedure appears to have gone well today. The actual procedure took maybe 15 minutes. We got home and Roger snoozed for most of the afternoon. Late this afternoon he wrote a note for me to update how he felt. He's NOT supposed to talk today and is supposed to talk on a very very limited basis tomorrow and then slowly ramp up his speaking. So, if you're calling for Roger...you're probably gonna get me. Anyway, he said in his note he noticed a positive difference in his ability to drink. YEA!!! A very good thing. He has been choking when he swallows water and any liquid. So this is a very good thing.
I hate to say this but I really gotta go. Meeting with the boat buyer tomorrow to close the deal and trying to do work work as well. ....just not enough hours in the day.
more soon. Apologies for typos and wrong words and poorly formed sentences. My brain will ....may....eventually return. hugs to all. a & r
Friday, June 8, 2012
The days seem to be blending together lately. Same different, different same. And there just doesn't seem to be enough energy physical or brain energy.
Roger is moving slowly these days. He tends to sleep or at least stay in bed dozing until 9:30 - 10:00. That's a magic time to get up, you see because McDonalds only serves breakfast (yep, nastyass McGriddles) until 10:30 on the weekdays. So....if you're gonna want one of those, you gotta get your skinny butt out of bed. Me putting a McGriddle in the oven on warm is simply ggggrrrrooossss. Yesterday, Roger was still in bed at 10:00 so I went upstairs and crawled back into bed and asked him, "so Rip Van Winkle, are you gonna get up today? " The response...nothing initially (this is typical)...so I repeated the question. The response "why, whats the point? " My response, "because if you want McGriddle for breakfast you have a limited window of opportunity and you know those nasty things are NOT good warmed over. And you'll get sheet wrinkles imprinted on your skinny butt if you don't get up soon. " I could see the wheels slowly turn and he slowly got up.
Yesterday was busy with scheduling appointments, moving appointments, working with the boat buyer, etc. Everything has suddenly (maybe not so suddenly) gotten very complicated. Lots of calls to doctors' office. A big bummer about Roger having no voice is my list of calls to make and return doubles. He can't be heard on the phone. So yesterday included calls to EarNoseThroat doctor's office several times, calls to oncologist's office to get presecription for home infused fluids, and then to reschedule an appt with Dr. Birhirray. I now not only make and receive my own calls and I am also Roger's voice so I make and receive calls for him. Hell, I have a hard enough time keeping myself organized and connected....now its time two.
Found out our insurance company will not cover home infusion of fluids. Soooooo, we have to go to the oncology center to get Roger infused. Its a bummer. We don't mind going because we are friends with a lot of the nurses but we don't like to go because 1) more chances of germs....best way to get sick is to go to the hopsital or the doctor's office, 2) its not as convenient as being at home, and 3) its just way more comfy to be home....NOT to mention its much much cheaper for the insurance company for us to infuse at home. I don't pretend to understand insurance companies and really don't now. Save money? not save money? Oh well. We're trying another work around through the nurses in the oncology center to see if we can still try to infuse at home. Will see.
We went to a retirement party for our brother-in-law Alan. Here is a picture from this evening. Pictures include Roger's aunts Jacki, Dottie and Barb and Uncle Dave, Sister Denise, and cousins Tina and Susie. Family is a wonderful thing for laughter and love. It was great to see everyone though Roger pooped out pretty quickly . He is snoozing on the sofa across from me. 
We are headed south again this weekend. The boat buyer wants the boat on Wednesday so we have to get all of our belongings off the boat this weekend. Neither of us are big on making the trip but we know we need to. I'll be heading back on Wednesday most likely without Roger to complete the deal with the buyer, go along for the sea trial and try to answer any questions...hopefully they will only ask "where are the towels" beyond that....well, I'm not the fountain of knowledge with the boat. Roger will probably be recovering from the outpatient procedure he is scheduled to have on Tuesday which we hope will help with his voice, improve his ability to swallow and improve his ability to breath. All things very challenged for Roger over the last 3 weeks.
Well, gotta go. More to post but I'm just too worn out. Love and hugs to all, a & r
Monday, June 4, 2012
The old girl is gone
I just told Roger I was posting to the blog. He asked what I was going to post about today. I told him the boat. He came up with the subject above, "the old girl is gone". And no, he's NOT talking about me. We met with the potential buyer of our boat today. This was this guy's third time to the boat, second time on it. He brought with him a friend. Roger, Mel (the buyer) and I sat on the back deck of the boat while his friend walked around the boat. Checked all the bedrooms, bathrooms, motor rooms, etc.
Mel told us he has been looking at our boat and another Hatteras in Tennessee somewhere. As we chatted away, he finally said he didn't want to insult us but was prepared to make an offer. I acted as Roger's voice. Mel was having a hard time hearing Roger's faint whisper of a voice. Mel made his offer, we countered and we all finally arrived at a number happy to all. Roger and Mel shook hands and then I stuck out my hand to shake Mel's hand and instead was scooped into his arms for a bear hug. I asked Roger if this was some special "boat" sale ritual. He informed me "no, he was going for a free feel". Nice. I would have pushed the price higher had I known a squeeze was going to be part of the deal. I mean REALLY.
We will take our possessions off the boat over the next 1-2 weeks. Then will do the infamous "sea trial" and then...hand over the keys.
And just like that we'll say good bye to a symbol of our former carefree life. Again we know, its just material "stuff" and really who cares about "stuff". We still have all the memories of all the fun. All the memories of friends and family. And, we still have each other. THAT'S all that truly matters.
So, the old girl will be gone soon. She is figuratively "gone" at this point. Its a sad happy day and a happy sad day. I think I've been more melancholy than Roger for the majority of the day. This evening was the first time he expressed a little emotion. I imagine the closer we get to handing over the keys, the more emotional it will be. I will say Roger has had a huge sense of relief. His shoulders seemed to come down from around his ears a little.
Physically, Roger is feeling same ol same ol. Exhausted, tired. Unpredictable pain after eating. The newest thing, is he thinks he might have pulled something in his foot or maybe has a stress line fracture from tripping on a step. He didn't fall, just stumbled a little. I've been icing it down and we've wrapped it. No bruising or real swelling so my guess is a strained muscle. This guy was invincible until cancer attacked him and robbed him of his health and his confidence. As he hobbled around and finally sat down to rub his foot, he quietly muttered, "it sucks to die". I quietly muttered back, "I know. Living sucks a lot too". Now, mind you we aren't all depressed all the time and nor are we all woe is us. We've settled in as much as you can settle in and look for a laughter whenever we possibly can and are still (as I mentioned in the prior post) ....we are still squeezing out ever drop of life we can. Just sometimes you gotta say this stuff SUCKS.
Along the lines of squeezing out every drop of life possible, we have seen loads of friends over the last week or so. Couples have dropped by to say hello, maybe share a glass of wine, or break bread and generally just chatted it up with us. Its nice to have the silence around the house broken with chatter and laughter. Roger agreed. Even though his participation was limited to laughter, shaking of his head, or often me being his microphone it was still nice to be engaged. This weekend will be more of the same. Roger has a lot of family coming to town. We look forward to visiting with them. I'm thinking about buying a Mr. Microphone or a kid's karaoke machine....then Roger's voice should be amplified enough to maybe talk on his own. Of course there will be NO singing. He can't sing (nor can I). No point in damaging any one's eardrums!
That's the scoop as we know it. Our (Roger's ) list of things To-Do gets one more item crossed off it. If nothing else, there is a sense of accomplishment with checking something off the list.
xxooxx, a & r
Mel told us he has been looking at our boat and another Hatteras in Tennessee somewhere. As we chatted away, he finally said he didn't want to insult us but was prepared to make an offer. I acted as Roger's voice. Mel was having a hard time hearing Roger's faint whisper of a voice. Mel made his offer, we countered and we all finally arrived at a number happy to all. Roger and Mel shook hands and then I stuck out my hand to shake Mel's hand and instead was scooped into his arms for a bear hug. I asked Roger if this was some special "boat" sale ritual. He informed me "no, he was going for a free feel". Nice. I would have pushed the price higher had I known a squeeze was going to be part of the deal. I mean REALLY.
We will take our possessions off the boat over the next 1-2 weeks. Then will do the infamous "sea trial" and then...hand over the keys.
And just like that we'll say good bye to a symbol of our former carefree life. Again we know, its just material "stuff" and really who cares about "stuff". We still have all the memories of all the fun. All the memories of friends and family. And, we still have each other. THAT'S all that truly matters.
So, the old girl will be gone soon. She is figuratively "gone" at this point. Its a sad happy day and a happy sad day. I think I've been more melancholy than Roger for the majority of the day. This evening was the first time he expressed a little emotion. I imagine the closer we get to handing over the keys, the more emotional it will be. I will say Roger has had a huge sense of relief. His shoulders seemed to come down from around his ears a little.
Physically, Roger is feeling same ol same ol. Exhausted, tired. Unpredictable pain after eating. The newest thing, is he thinks he might have pulled something in his foot or maybe has a stress line fracture from tripping on a step. He didn't fall, just stumbled a little. I've been icing it down and we've wrapped it. No bruising or real swelling so my guess is a strained muscle. This guy was invincible until cancer attacked him and robbed him of his health and his confidence. As he hobbled around and finally sat down to rub his foot, he quietly muttered, "it sucks to die". I quietly muttered back, "I know. Living sucks a lot too". Now, mind you we aren't all depressed all the time and nor are we all woe is us. We've settled in as much as you can settle in and look for a laughter whenever we possibly can and are still (as I mentioned in the prior post) ....we are still squeezing out ever drop of life we can. Just sometimes you gotta say this stuff SUCKS.
Along the lines of squeezing out every drop of life possible, we have seen loads of friends over the last week or so. Couples have dropped by to say hello, maybe share a glass of wine, or break bread and generally just chatted it up with us. Its nice to have the silence around the house broken with chatter and laughter. Roger agreed. Even though his participation was limited to laughter, shaking of his head, or often me being his microphone it was still nice to be engaged. This weekend will be more of the same. Roger has a lot of family coming to town. We look forward to visiting with them. I'm thinking about buying a Mr. Microphone or a kid's karaoke machine....then Roger's voice should be amplified enough to maybe talk on his own. Of course there will be NO singing. He can't sing (nor can I). No point in damaging any one's eardrums!
That's the scoop as we know it. Our (Roger's ) list of things To-Do gets one more item crossed off it. If nothing else, there is a sense of accomplishment with checking something off the list.
xxooxx, a & r
Friday, June 1, 2012
First, lets start with the visit to the doctor's office. We are getting good at doctors. We went to the Ear Nose Throat doctor's office and took with us a large Ziploc bag with all of Roger's prescriptions (they all want to know what medication you are on) . Yet another doctor. We arrived on time. Had to fill out form after form after form. 30 minutes later we were ushered to an exam room to wait for Dr. Youkilis (apparently related to the infamous baseball player Youkilis....I'm out of the sports world, so I have no idea).
The doctor came in an performed a series of tests on Roger again the purpose to determine if possible what was/is going on with Roger's voice loss. As the doctor started examining Roger, peering in various holes and orifices of Roger's . No worries. No Xrated stuff. Remember he is an ENT doctor. Anyway, as he was poking and prodding, he looked into Roger's ears whereupon the doctor announced, "hmmmm, you have a lot of wax build up. Do you mind if I remove it?" Ok, ok. That should be no big deal, right? I've been with Roger through thick and thin, blood and all kinds of stomach-turning moments (and remember, I'm NOT Florence Nightengale. No nurse on this end). Well, um, no. I'm not big on ear wax. You see, one mindless-tv-day we were watching Mythbusters and they were testing some DISGUSTING myth about making a candle with earwax. GGGGGGRRRROOOSSSSSS. And even grosser....we watched the damn program. Anyway, I will spare you all the scarring of the program. Suffice to say, it was gross and now I am grossed out by earwax. So, as the doctor scooped out little scoop after little scoop of earwax, I sat across from Roger seriously disgusted and saw a tiny little smile on his face. He later shared with me he knew how disgusted I was because he remembered how much the tv program grossed me out. Nice, huh?
So, the doctor's visit. He examined Roger and determined Roger's hearing loss is because his left vocal cord is paralyzed. The doctor theorized it was due to the tumors in Roger's chest. Cancer strikes again. Really? It hasn't done enough? It has to go after his ability to communicate? Really? Not that Roger was all that chatty lately, but to take away his voice entirely? Exceptionally cruel and inhumane. After making the prognosis, the doctor said he did have a procedure he thought might help. Basically, outpatient. Roger would be knocked out for 25-30 min. The doctor would go down Roger's throat and would insert a fluid type implant into Roger's left vocal cord which would firm up the vocal cord and allow the right vocal cord to reverberate and thus create sound. The doctor also identified the fact Roger has been having increasing difficulty swallowing liquids (which is true). Apparently the vocal cord paralysis interferes with the swallowing process.
We decided to get on the doctor's calendar for June 12 to have the procedure. All of us, Roger, the doctor, and me, agreed the quality of life - however long that life - should include the ability to communicate. I've missed hearing Roger's voice. Every night I tell him good night and that I love him. I have to lean in real close wrapping my arm around him to hear him whisper, "I love you too". Once the doctor left the exam room, as I sat across from Roger I looked at him, took a deep breath and said, "You and your poor body have been through so much. We'll do whatever you want". There are risks, but in the whole scheme of things. Roger wants his voice back and I support him 100%. And, I want his voice back. And so, we are on the doctor's calendar for June 12. It will most likely take a few days but the doctor thought we should hear a noticeable difference in Roger's voice.
As you most likely can tell, or maybe you can't. Roger is fragile and getting more so. His blood pressure has been very low. We think dehydration may contribute to the low blood pressure, so we decided to do fluids here at home. Got his port accessed a couple days ago. We've done fluids for the past three days. His blood pressure *has* gone up. So, it appears the fluids are helping. We just finished tonight's dose. He is trying to eat more but sleeps a bunch so I've been prodding every chance I get.
Meeting with the prospective buyer of our boat on Monday. Basically have decided we are going to make a deal, whatever the deal. Roger does not want me to have to deal with the sale of the boat on my own. I don't want Roger to worry about anything, so....we are going to sell the boat. Plus, Roger has expressed he just does not think he can handle the boat anymore. Simple. Done. Lets sell it. On to the next thing.
Obviously lots going on. Trying to find peace. Trying to squeeze out every drop of life we possibly can.
Sending big hugs your way. Hope all is groovy with you. xxooxx, a & r
The doctor came in an performed a series of tests on Roger again the purpose to determine if possible what was/is going on with Roger's voice loss. As the doctor started examining Roger, peering in various holes and orifices of Roger's . No worries. No Xrated stuff. Remember he is an ENT doctor. Anyway, as he was poking and prodding, he looked into Roger's ears whereupon the doctor announced, "hmmmm, you have a lot of wax build up. Do you mind if I remove it?" Ok, ok. That should be no big deal, right? I've been with Roger through thick and thin, blood and all kinds of stomach-turning moments (and remember, I'm NOT Florence Nightengale. No nurse on this end). Well, um, no. I'm not big on ear wax. You see, one mindless-tv-day we were watching Mythbusters and they were testing some DISGUSTING myth about making a candle with earwax. GGGGGGRRRROOOSSSSSS. And even grosser....we watched the damn program. Anyway, I will spare you all the scarring of the program. Suffice to say, it was gross and now I am grossed out by earwax. So, as the doctor scooped out little scoop after little scoop of earwax, I sat across from Roger seriously disgusted and saw a tiny little smile on his face. He later shared with me he knew how disgusted I was because he remembered how much the tv program grossed me out. Nice, huh?
So, the doctor's visit. He examined Roger and determined Roger's hearing loss is because his left vocal cord is paralyzed. The doctor theorized it was due to the tumors in Roger's chest. Cancer strikes again. Really? It hasn't done enough? It has to go after his ability to communicate? Really? Not that Roger was all that chatty lately, but to take away his voice entirely? Exceptionally cruel and inhumane. After making the prognosis, the doctor said he did have a procedure he thought might help. Basically, outpatient. Roger would be knocked out for 25-30 min. The doctor would go down Roger's throat and would insert a fluid type implant into Roger's left vocal cord which would firm up the vocal cord and allow the right vocal cord to reverberate and thus create sound. The doctor also identified the fact Roger has been having increasing difficulty swallowing liquids (which is true). Apparently the vocal cord paralysis interferes with the swallowing process.
We decided to get on the doctor's calendar for June 12 to have the procedure. All of us, Roger, the doctor, and me, agreed the quality of life - however long that life - should include the ability to communicate. I've missed hearing Roger's voice. Every night I tell him good night and that I love him. I have to lean in real close wrapping my arm around him to hear him whisper, "I love you too". Once the doctor left the exam room, as I sat across from Roger I looked at him, took a deep breath and said, "You and your poor body have been through so much. We'll do whatever you want". There are risks, but in the whole scheme of things. Roger wants his voice back and I support him 100%. And, I want his voice back. And so, we are on the doctor's calendar for June 12. It will most likely take a few days but the doctor thought we should hear a noticeable difference in Roger's voice.
As you most likely can tell, or maybe you can't. Roger is fragile and getting more so. His blood pressure has been very low. We think dehydration may contribute to the low blood pressure, so we decided to do fluids here at home. Got his port accessed a couple days ago. We've done fluids for the past three days. His blood pressure *has* gone up. So, it appears the fluids are helping. We just finished tonight's dose. He is trying to eat more but sleeps a bunch so I've been prodding every chance I get.
Meeting with the prospective buyer of our boat on Monday. Basically have decided we are going to make a deal, whatever the deal. Roger does not want me to have to deal with the sale of the boat on my own. I don't want Roger to worry about anything, so....we are going to sell the boat. Plus, Roger has expressed he just does not think he can handle the boat anymore. Simple. Done. Lets sell it. On to the next thing.
Obviously lots going on. Trying to find peace. Trying to squeeze out every drop of life we possibly can.
Sending big hugs your way. Hope all is groovy with you. xxooxx, a & r
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