Rarely do I get such opportunity to play, and with my little Brother who is bigger than I am to boot. I took the day off to be with him and had several options for entertainment. Friday early AM I found myself out of sorts and did not feel up to the rigors of a long drive to KY to surprise Rex who would likely be too exhausted after his week for us, not that such consideration would enter my head. So I opted to go to a driving range I wondered about in Muncie, then downtown to the toy store I wondered about buying a toy in. This was an adult toy store, not the kind with things you do to horses but the kind with electric trains, airplanes and the like. Paul schmoozed the owner and the owner schmoozed him. In the end there was a lot of schmoozing going on but no money spent. Got me a new kite so I will be going to go flying again. Didn’t think I would be able to but I am able to. Have to run that by Vanessa later, unauthorized purchase and all that, you know how it goes. I can’t pull the C card for excuses. Then on to the AMA museum on the east side to show him the history of model aircraft, RC and line gas powered. We had a great beer and some fantastic loaded wedges at the Whitewater downtown, flew flight simulators, escaped serious injury at the driving range and laughed until we cried. Somewhere in there we fired off rockets, including the Hays Screaming Eagle lovingly assembled by yours truly and miraculously recovered all and they will all live to see the wide open skies again.
At least two episodes we were reduced to tears of laughter. Me hitting the roof of the driving range was one of them. When I suggested I put up a sign saying Mike Courtney Asshole to go along with the neighbors sign, Suzi Cross Country. Vanessa responded that I shouldn’t put up a sign because there might be neighbors that don’t know. I think that was a true high point for Paul during his visit. This being his first time ever I think spending so much time with us he seemed intrigued by the mechanics of our relationship. He told me Vanessa looked good, I don’t know if he told her. I carried a stick when I needed to, if I was going to stand for a long period of time just in case during the weekend but only really used it a couple of times. We topped our Friday off with a trip to the local casino where I came out six dollars richer and full of myself.
Many would champion the American way striking us all as individuals in the John Wayne mold who on our own and against all odds scrape up the ladder and a few every year break the constraints of poverty to a state where money is not a day to day matter of thought. The fact is no such path or progression exists in America and I imagine it does not exist any where else. Odds are astronomical. The reality for the masses is born poor, die poor, born privileged, die privileged. Liberals hate it, conservatives champion it.
That being said the cancer has visited upon me another blessing, the blessing of my Brother Paul, who made it a point to arrange his travel to allow for a couple of days to stay with me. For my part I was thrilled to have an agenda and alternative agenda bringing up many of the highlights and tourist attractions that surround me right here in Indiana. Let me just point out an entire day can be spent in Muncie at a year round driving range, excellent restaurants, a big boy toy store, a big boy modeling museum with flight simulators. On a bright sunny day one can enjoy a beauty pageant of young men and women on campus at BSU for free, just for driving through. It is great to be a wealthy man.
30.8.10
August 14 2010 Another Great Weekend And Encounter
Sun rise with Vanessa this Saturday morning. A light rain washing the humidity from the morning air gave a moments respite from the oppressive humidity and heat that has draped us for the past many days.. I had a great workout at the gym but passed some solids with my urine afterwards. Not blood per say, not sure what the hell it is but when it passed it made me jump. Flakes of something, tissue, dried blood, parts of a kidney, who knows. I took pictures of it for posterity.
What I do know is it is very disconcerting to have anything but urine coming out. As for the gym it was 10 minutes on the elliptical, first time back followed by a 30 minute round through the gym. I feel great as I write this, though a little weak kneed from my whizzing experience. Oh well, off to breakfast as we always do and today hopefully visit the Colts practice.
In the line waiting for our golf cart to transport us back to parking he stepped up and out of the blue ‘What’s going on with the leg?’ he asked with a smile. ‘I’ve got a condition called lymphedema caused by cancer in some nodes. His eyebrows raised and a smile of recognition came over his face, like he had just run into an old friend he handn’t seen in a long time and always liked. With a grin he proclaimed ‘Look at this leg. It’s twice as big as the other. Prostate cancer, but yours looks a lot better than mine’ he said.
‘We got hooked up with a great therapist at Clarian North’ I explained. ‘Doing the massage thing?’ he asked. ‘Yes, and with the compression stockings it has got it under control. She trained Inger, my massage therapist to do this at home. Her name is Deanna. She taught me that it wasn’t just ‘part of it’. I paused, struggling to remember the last name. Vanessa, aka Inger, jumped in with details. ‘Have you ever heard of Reids Sleeve?’ he asked. ‘No’ was my reply. ‘Well, they’re expensive, about 1800 bucks and you wear them at night. You wake up and take it off and your leg looks like a waffle iron but it breaks down those proteins. ‘I’ll check it out’ came my reply. A Grandfather likely in his 70’s, he jumped out of the cart when it stopped at his car and came around to shake my hand. ‘Prostate cancer, 13 years and still going strong’ he said. ‘Bladder cancer and just getting started’ came my reply. ‘You’ll make it’ he bellowed with a big grin, ‘have you got a card?’ I gave him one of my awareness cards with my blog address and off he went.
What I do know is it is very disconcerting to have anything but urine coming out. As for the gym it was 10 minutes on the elliptical, first time back followed by a 30 minute round through the gym. I feel great as I write this, though a little weak kneed from my whizzing experience. Oh well, off to breakfast as we always do and today hopefully visit the Colts practice.
In the line waiting for our golf cart to transport us back to parking he stepped up and out of the blue ‘What’s going on with the leg?’ he asked with a smile. ‘I’ve got a condition called lymphedema caused by cancer in some nodes. His eyebrows raised and a smile of recognition came over his face, like he had just run into an old friend he handn’t seen in a long time and always liked. With a grin he proclaimed ‘Look at this leg. It’s twice as big as the other. Prostate cancer, but yours looks a lot better than mine’ he said.
‘We got hooked up with a great therapist at Clarian North’ I explained. ‘Doing the massage thing?’ he asked. ‘Yes, and with the compression stockings it has got it under control. She trained Inger, my massage therapist to do this at home. Her name is Deanna. She taught me that it wasn’t just ‘part of it’. I paused, struggling to remember the last name. Vanessa, aka Inger, jumped in with details. ‘Have you ever heard of Reids Sleeve?’ he asked. ‘No’ was my reply. ‘Well, they’re expensive, about 1800 bucks and you wear them at night. You wake up and take it off and your leg looks like a waffle iron but it breaks down those proteins. ‘I’ll check it out’ came my reply. A Grandfather likely in his 70’s, he jumped out of the cart when it stopped at his car and came around to shake my hand. ‘Prostate cancer, 13 years and still going strong’ he said. ‘Bladder cancer and just getting started’ came my reply. ‘You’ll make it’ he bellowed with a big grin, ‘have you got a card?’ I gave him one of my awareness cards with my blog address and off he went.
Battling An Unintended Consequence
When you see cancer commercials they deal with a specific disease or treatment center but one does not learn of the unintended consequences of the disease and/or treatments until experienced first hand with one's self or close relative. Early August and my left upper leg is bloated to the point that it rubs against my bermudie shorts. Standing up it looks like I have a saddle bag mounted in my inner thigh. Vanessa welcomed me to the world of fat legs. Apparently manufacturers of shorts in some cases have not caught up with the leg filling thighs fashion so they are not worried about placing seams and pleats in unfortunate areas of movement. I was glad to know I was not special in my plight, I guess. Never the less this is a far sight better than it was just a few weeks ago. It appears we have reached a plateau of sorts with the lymphedema, growing and shrinking within some preset volumetric boundaries governed by activity, rest and who knows what other unknown factors. The fluid moves about readily, but not entirely on it’s own. For me it means the cancer in the lymph nodes has not abated.
Got the bill from the hospital for the 13 sessions of occupational therapy to bring the edema down to the point I could be fitted for stockings. Remembering the first trip, when the left foot was in a sandal held together by a small bungee cord and large flat clip that I left the orange coating on for show I think I am proud of smiling through it as much as I did. It was there in case medical marijuana came to be. I figured I would always have a clip on hand. At least that is what I told the nurses. From ‘it’s part of it’ to Deanna, an angel of mercy who taught us about my condition and how to treat it. Her room was a narrow berth, clinically white with a small desk, exam table, harsh light with some man emblazoned on the ceiling (she usually had women with this condition in an arm after breast cancer surgery), cabinets and the exam table. Her work stool a second chair and a desk chair rounded out the furniture. The north wall was adorned with large posters showing the lymphatic system in all of it’s gory detail. At first it was all gibberish to me. Thirteen sessions later I was nominally ready to be fit with compression garments. Inger the Number 2 AOB (Angel On Board) at the house had taken over and mastered all the technical end of manual lymph drainage and within a few short weeks I wore two shoes again. The bill made me remember the experience. With a smile on her face and a spring in her step she led you into her parlor for MLD. She had all the equipment there. Devices to break down the accumulated proteins, charts and graphs, printouts, electronic means to contact and get information all were in the ready. Her initial assessment was grievous and she was angry for the amount of time it took for us to get to her. If not for Marietta’s efforts we seemed to be at a total loss. Her routine was the same every time at first, followed by wrapping with padding and compression tape. At the end we were using a lymphedema pump and taping. The shoe thing represented for us a huge victory in the fight to overcome the unintended consequences.
Got the bill from the hospital for the 13 sessions of occupational therapy to bring the edema down to the point I could be fitted for stockings. Remembering the first trip, when the left foot was in a sandal held together by a small bungee cord and large flat clip that I left the orange coating on for show I think I am proud of smiling through it as much as I did. It was there in case medical marijuana came to be. I figured I would always have a clip on hand. At least that is what I told the nurses. From ‘it’s part of it’ to Deanna, an angel of mercy who taught us about my condition and how to treat it. Her room was a narrow berth, clinically white with a small desk, exam table, harsh light with some man emblazoned on the ceiling (she usually had women with this condition in an arm after breast cancer surgery), cabinets and the exam table. Her work stool a second chair and a desk chair rounded out the furniture. The north wall was adorned with large posters showing the lymphatic system in all of it’s gory detail. At first it was all gibberish to me. Thirteen sessions later I was nominally ready to be fit with compression garments. Inger the Number 2 AOB (Angel On Board) at the house had taken over and mastered all the technical end of manual lymph drainage and within a few short weeks I wore two shoes again. The bill made me remember the experience. With a smile on her face and a spring in her step she led you into her parlor for MLD. She had all the equipment there. Devices to break down the accumulated proteins, charts and graphs, printouts, electronic means to contact and get information all were in the ready. Her initial assessment was grievous and she was angry for the amount of time it took for us to get to her. If not for Marietta’s efforts we seemed to be at a total loss. Her routine was the same every time at first, followed by wrapping with padding and compression tape. At the end we were using a lymphedema pump and taping. The shoe thing represented for us a huge victory in the fight to overcome the unintended consequences.
29.8.10
Sharing Brings Support
Starting Monday with an inspiring note through Facebook from a sweet soul I last had a conversation with on or about 1975. She had read parts of this that I have published on the blog. I am a little uncomfortable with all this writing about myself yet I find so many who care about me I am humbled and driven to go on with it.
Hi Mike,
Hope you'll remember me. (W)
I just read a couple of your recent blogs at J's request.
I can not imagine the horrific treatments you are undergoing. It conjures up random barbaric torture scenes from who knows where in my mind. Of course, I wish I had something to offer. I know Vanessa would gladly take the treatments for you if it were possible. From what I understand there are a LOT of people who think you are phenomenal and are standing with you.
Impressive, your acute observations in that precarious space you carry out your days. That new keenness has got to be pivotal to some aspect of a lovelier life. (Along with the treatments doing their job, you may border on perfect when you're done).
I wanted you to know that I was thinking about you. That this horrible thing you go through in private matters to more people than you know.
God bless you through this.
W
Thank you W, and of course how could I forget? It is great to reconnect. The journal, written at the time, I think leaves a darker impression than reality for me. If I were not so stubborn and boneheaded a lot of my discomfort may have been averted. In any event having never been sick I plead ignorance. You are correct about perspectives. The story gets better. I started in July posting the first page. I was starting on a book when diagnosed and just kept going with a different subject, being narcissistically me. At present I am back at work and Van's honey do list, which impressively fills two pages of a legal pad. Great to be well again.
As I have learned there are many blessings, your care and concern certainly being one of them. Also, do to my mobility issues I have a handicap placard, placing me at the gate entrance at Verizon and other venues. Nice.
I was not sure about sharing my journal, but I have learned that my life is filled with caring people who really do want to know all the details, even though they don't. Soon my postings will be current. We are having a good summer, and I hope you are as well.
Random barbaric scenes eh? Somehow I always knew.
Lovingly yurs,
Mike
Hi Mike,
Hope you'll remember me. (W)
I just read a couple of your recent blogs at J's request.
I can not imagine the horrific treatments you are undergoing. It conjures up random barbaric torture scenes from who knows where in my mind. Of course, I wish I had something to offer. I know Vanessa would gladly take the treatments for you if it were possible. From what I understand there are a LOT of people who think you are phenomenal and are standing with you.
Impressive, your acute observations in that precarious space you carry out your days. That new keenness has got to be pivotal to some aspect of a lovelier life. (Along with the treatments doing their job, you may border on perfect when you're done).
I wanted you to know that I was thinking about you. That this horrible thing you go through in private matters to more people than you know.
God bless you through this.
W
Thank you W, and of course how could I forget? It is great to reconnect. The journal, written at the time, I think leaves a darker impression than reality for me. If I were not so stubborn and boneheaded a lot of my discomfort may have been averted. In any event having never been sick I plead ignorance. You are correct about perspectives. The story gets better. I started in July posting the first page. I was starting on a book when diagnosed and just kept going with a different subject, being narcissistically me. At present I am back at work and Van's honey do list, which impressively fills two pages of a legal pad. Great to be well again.
As I have learned there are many blessings, your care and concern certainly being one of them. Also, do to my mobility issues I have a handicap placard, placing me at the gate entrance at Verizon and other venues. Nice.
I was not sure about sharing my journal, but I have learned that my life is filled with caring people who really do want to know all the details, even though they don't. Soon my postings will be current. We are having a good summer, and I hope you are as well.
Random barbaric scenes eh? Somehow I always knew.
Lovingly yurs,
Mike
28.8.10
Home Family And Fashion
Sunday August 8, the venetian blind slats arched down towards me and I can now make out the dark splotches of trees in front against a lighter gray backdrop. Sun rises and it is another day in paradise. Spent Saturday methodically working on trim and finish items around the house with a lot of carpentry and a little building and grounds work. This is trim and finish work to polish the asset for maximum return on investment even as the market collapses around us. No matter, you own a home you have to keep up with the maintenance because we all know little things get big in a hurry if left unattended. Windows needing paint will soon rot, shingles missing will make for leaks and so forth. Stay busy all the time. Jennifer called yesterday, just to chat I think. I love her voice and laugh. She has a lot of stress and issues in her life, my condition included. As we talked I could see her and smell her in my mind, and it reminded me of how much I miss her presence and the handful she is when around. When it comes to Daughters, we did real good.
Traveling today to the Wife’s family reunion I just realized with my high dollar stockings, girdle and underwear I am wearing over a hundred dollars worth of undergarments. This puts me in Jennifer’s stratospheric wardrobe realm, although Jocelyn hastened to point out on my mention of the thought that her investment might be similar, but it covers a lot less. More detail than I needed. But consider, someone in the next stall might see a calf or two of mine under the divider and think perhaps I was a high fashion model, or a walking manikin, or someone with very strange skin or perhaps even a clothes horse. Oh no no, we’re not going there. That’s not fair to those of us who wear over a hundred dollars worth of underwear.
Traveling today to the Wife’s family reunion I just realized with my high dollar stockings, girdle and underwear I am wearing over a hundred dollars worth of undergarments. This puts me in Jennifer’s stratospheric wardrobe realm, although Jocelyn hastened to point out on my mention of the thought that her investment might be similar, but it covers a lot less. More detail than I needed. But consider, someone in the next stall might see a calf or two of mine under the divider and think perhaps I was a high fashion model, or a walking manikin, or someone with very strange skin or perhaps even a clothes horse. Oh no no, we’re not going there. That’s not fair to those of us who wear over a hundred dollars worth of underwear.
Does Gabs Make You Gabby?
August 5 I thought about getting a toy as I passed an intriguing storefront, then I thought why should I? Stopped by Gerald’s and just realized we spent the entire visit with me talking about myself. Should have spent the time talking about what he was in to. Hokey smokes.
27.8.10
My Morning Routine
Inger starts early, working my ‘pump points’ every morning. Last week she added reading the daily scripture first and so we have a new family routine. I only wish Vanessa could be part of it but we can never seem to find her. Anyway, Inger comes in and sits in my office chair, generally remarking about it’s condition. She starts to read the scripture for the day. Snickers comes in talking to her and jumps up in her lap. I get on the table and with some soft music in the background we get our heads on straight. After the reading the cat jumps down. Then the daily work over begins. So this routine is now part of our family routine, a time of togetherness we did not have before mandated by my situation. If you did not know I had a tumor this would be the story of a wealthy man, and if anything it shows how wealthy I am.
26.8.10
August 4, 2010 Neuropathy raises it’s ugly head
In July I decided it was time to quit taking all pills but one, and started cutting down on the drug for neuropathy, which makes me tired, kills my taste buds and gives me a voracious appetite. The concept of permanent damage is especially distressing. I guess I always though I would go through life basically just aging without anything on my body that gets permanently in a situation where I have to take pills for it all the time, or worse. Yet I know diabetic patients and others who have had chronic conditions all their lives and now apparently I have two left over from the cancer, lymphedema and neuropathy. Today for me this is a most depressing and distressing outlook.
Hi Marietta,
This is DOB 05/05/5555. The pain in the abdomen gets a little better every day. It is now some minor soreness in the area. I am being careful. The lymphedema is also reduced and slowing. Walked a mile Monday morning and did ok. Wonderful.
I no longer have indications of the foot problem. Can I quit taking those pills (gabs for neuropathy in feet)?
Otherwise, the honey do list is on a legal pad, not a letter size pad and we have a lot of Summer left. Hopefully I won't be crying out for help in the interim, see you in September.
From:, Marietta
Sent: Friday, July 23, 2010 3:31 PM
To: 'Mike Courtney'
Subject: RE: Patient Michael Courtney condition update
You can start to taper off of the gabapentin and see how it affects you. How many pills are you taking a day?
If you are taking 3 pills 3 times a day, you can decrease down to 2 pills 3 times a day over 4 days and then 1 pill 3 times a day for 4 days and see if your foot pain is still ok.
Let me know if it continues to improve and maybe we can get you off of the gabapentin all together.
Take care and have a great weekend (knocking down the honey do list).
Marietta
August 4, 2010
DOB 0005555
Hi Marietta,
I dialed down to 1 pill a day and noted this AM purplish discoloration in a couple of toes. I am returning to the prescribed dosage of 900 whatevers a day in three doses. Other than that I am getting along well right now. The pain in lower left subsided with some tenderness remaining. Also it let's me know if I have over exerted myself on the honey do trail.
Hope you folks are having a good Summer.
The disease and subsequent treatments have done considerable permanent damage apparently, not only to my drain system, but also blood vessels, nerves and who knows what else. Bummer. I noted this morning what looked like bruises on my toes. Inger said yesterday my toes were cold. Although I disdain the entire pill taking regimen I will abide to avoid the horrors of neuropathy. As Dr. Noah once said, ‘We’ve got a pill for everything.’
Rich men make a bucket list when their mortality is nose to nose with their reality. Wealthy men may take a different path.
Hi Marietta,
This is DOB 05/05/5555. The pain in the abdomen gets a little better every day. It is now some minor soreness in the area. I am being careful. The lymphedema is also reduced and slowing. Walked a mile Monday morning and did ok. Wonderful.
I no longer have indications of the foot problem. Can I quit taking those pills (gabs for neuropathy in feet)?
Otherwise, the honey do list is on a legal pad, not a letter size pad and we have a lot of Summer left. Hopefully I won't be crying out for help in the interim, see you in September.
From:, Marietta
Sent: Friday, July 23, 2010 3:31 PM
To: 'Mike Courtney'
Subject: RE: Patient Michael Courtney condition update
You can start to taper off of the gabapentin and see how it affects you. How many pills are you taking a day?
If you are taking 3 pills 3 times a day, you can decrease down to 2 pills 3 times a day over 4 days and then 1 pill 3 times a day for 4 days and see if your foot pain is still ok.
Let me know if it continues to improve and maybe we can get you off of the gabapentin all together.
Take care and have a great weekend (knocking down the honey do list).
Marietta
August 4, 2010
DOB 0005555
Hi Marietta,
I dialed down to 1 pill a day and noted this AM purplish discoloration in a couple of toes. I am returning to the prescribed dosage of 900 whatevers a day in three doses. Other than that I am getting along well right now. The pain in lower left subsided with some tenderness remaining. Also it let's me know if I have over exerted myself on the honey do trail.
Hope you folks are having a good Summer.
The disease and subsequent treatments have done considerable permanent damage apparently, not only to my drain system, but also blood vessels, nerves and who knows what else. Bummer. I noted this morning what looked like bruises on my toes. Inger said yesterday my toes were cold. Although I disdain the entire pill taking regimen I will abide to avoid the horrors of neuropathy. As Dr. Noah once said, ‘We’ve got a pill for everything.’
Rich men make a bucket list when their mortality is nose to nose with their reality. Wealthy men may take a different path.
25.8.10
August Starts Good
First of August walking through Menards on Sunday morning working on things from the ‘things we can do’ list and some things that aren’t even on the list I again am struck by my progress. Walking through Menard’s again, only a dream just a few weeks ago and now here I am wandering the aisles aimlessly as always without so much as a stick to hold me up. My mobility and overall comfort level seems to be improving on a daily basis now. Sensation in my left leg has changed considerably. While still a very strange feeling it no longer has the fatigue and ache at the bone level it had. I’ll enjoy it while I can have it.
August 2, 2010
A guy just passed me on one of those homo ninja motorcycles, the kind where you have to stick your butt up in the air and put your chin down behind the handlebars, kind of in a crouching position with the big fat boy tire on the back and the reeeeep, yaaaahmaaah haulll sound, the guy just passed me standing up on it, and the say I’m terminal, holy cow. Dog days continue in this hottest of hot summers, with air so humid you breathe by cutting a cubic foot out and wringing the water out. I mean it is humid. Our weekend included entertainment by an Elvis impersonator and biographer. When on key you could close your eyes and almost envision an Elvis impersonator. I went to Vanessa’s gym event, an open house of sorts and she showed me her routine. After a few years she is often mistaken for my niece. The program works.
I removed a door in the house. Making interior doors work is on the ‘things we can do’ list and in this heat working in the AC makes a lot of sense. After removing the unit I horsed around a few hours in hopes reinstalling would be a walk in the park and trying to do it the wrong way for lack of sense. Finding that not to be the case I retired for the evening and a wonderful time with Van. Sunday I awoke a little later than usual. Before I got up in my half sleep one of the many who occupy space in my head said ‘Wow, at last, you’re over it’. Another replied ‘at last, and with only one treatment.’ Then the fog of slumber rolled off of me entirely and I laid in the reality that for the first time in my life I have a sickness I am not getting over, and I am in my eighth month since diagnosis, and perhaps my second or third year or more since contracting the dog gone thing.
August 2, 2010
A guy just passed me on one of those homo ninja motorcycles, the kind where you have to stick your butt up in the air and put your chin down behind the handlebars, kind of in a crouching position with the big fat boy tire on the back and the reeeeep, yaaaahmaaah haulll sound, the guy just passed me standing up on it, and the say I’m terminal, holy cow. Dog days continue in this hottest of hot summers, with air so humid you breathe by cutting a cubic foot out and wringing the water out. I mean it is humid. Our weekend included entertainment by an Elvis impersonator and biographer. When on key you could close your eyes and almost envision an Elvis impersonator. I went to Vanessa’s gym event, an open house of sorts and she showed me her routine. After a few years she is often mistaken for my niece. The program works.
I removed a door in the house. Making interior doors work is on the ‘things we can do’ list and in this heat working in the AC makes a lot of sense. After removing the unit I horsed around a few hours in hopes reinstalling would be a walk in the park and trying to do it the wrong way for lack of sense. Finding that not to be the case I retired for the evening and a wonderful time with Van. Sunday I awoke a little later than usual. Before I got up in my half sleep one of the many who occupy space in my head said ‘Wow, at last, you’re over it’. Another replied ‘at last, and with only one treatment.’ Then the fog of slumber rolled off of me entirely and I laid in the reality that for the first time in my life I have a sickness I am not getting over, and I am in my eighth month since diagnosis, and perhaps my second or third year or more since contracting the dog gone thing.
24.8.10
Angels And Other Friends
The one who has shown her metal here is Vanessa aka Inger the Swedish masseuse. She has kept her suffering from me, been my advocate, manager and secretary. She has coached, guided, loved, attended, cared for, fed, clothed, hauled, stood by, stayed up with, hovered over, waited for, waited on, cleaned up after me. She mentioned last night taking another shot at the weedeater this weekend as she fearlessly prepares for taking over major portions of property management. Our neighbor Dale, who mowed the property when she was too exhausted to, asked if he could mow yesterday but pride and stubbornness inbred in her spirit led her to decline. ‘We don’t have to go as many places right now so I can do it’ she declared. I proudly told Phil I was cleared for the hedge trimmer and thanked him for doing them. I was amazed at the job he did, down to moving clippings to the compost pile.
I am not sure how to thank Dale and Bob for all their help on the property, or Jim, Dan and the rest for their offers and support. For a bunch of neighbors who wave and smile but hardly ever talk there sure is a lot of love around here of the Christian variety. We forget it is the neighborhoods that are the beginning of everything for every child, the heart of democracy.
I am not sure how to thank Dale and Bob for all their help on the property, or Jim, Dan and the rest for their offers and support. For a bunch of neighbors who wave and smile but hardly ever talk there sure is a lot of love around here of the Christian variety. We forget it is the neighborhoods that are the beginning of everything for every child, the heart of democracy.
23.8.10
Awareness, Improvement And Political Correctness
My ‘awareness’ campaign notifying those I know of my blog of this record is really a cover as I suffer through these days of wondering a little about my future. In any event I am preparing for it, getting back into a gym regimen, increasing sweat therapy with outside property projects and so forth. Jeans are getting a little easier to wear and I am at last getting my voracious appetite under control.
In keeping with my promise I will now include ‘Life According To Rex’ segments that arise from our visits, which sometimes unravel into ad hoc brainstorming sessions. On marriage Rex says it is a life to wife swap, you give up your life and take on your wife, and if you were successful you traded up. That is certainly true in my case.
After reading part of this record an old friend whom I no longer see but am able to keep up with through the wonder of the internet wrote;
Hi Mike,
You sure know how to lead off an email…no dancing around or beating up the bushes or coating with sugar.
I read your blog – side bar…20 years ago, you know when Gore was thinking of inventing the internet, no one that knows you would be surprised that you would someday write a blog…even though no one had an inkling of such a contraption. Anyway, I enjoyed your writing, but wished the topic was different. You made me laugh out loud (I can’t do the “lol”) with descriptions and noun selections. And, I think you set a record for the number of references to icing marbles.
Your message is one of hope and affirmation of the importance of family. The “in sickness and in health” doesn’t seem like a romantic platitude, once someone shows their metal when the gravity of the situation seems overwhelming.
Give me an update when you can, especially if you continue to write your blog (which is Japanese for standup). I pray that you continue the “good fight”, continue to get better and continue to be lifted by those that love you.
Don
In keeping with my promise I will now include ‘Life According To Rex’ segments that arise from our visits, which sometimes unravel into ad hoc brainstorming sessions. On marriage Rex says it is a life to wife swap, you give up your life and take on your wife, and if you were successful you traded up. That is certainly true in my case.
After reading part of this record an old friend whom I no longer see but am able to keep up with through the wonder of the internet wrote;
Hi Mike,
You sure know how to lead off an email…no dancing around or beating up the bushes or coating with sugar.
I read your blog – side bar…20 years ago, you know when Gore was thinking of inventing the internet, no one that knows you would be surprised that you would someday write a blog…even though no one had an inkling of such a contraption. Anyway, I enjoyed your writing, but wished the topic was different. You made me laugh out loud (I can’t do the “lol”) with descriptions and noun selections. And, I think you set a record for the number of references to icing marbles.
Your message is one of hope and affirmation of the importance of family. The “in sickness and in health” doesn’t seem like a romantic platitude, once someone shows their metal when the gravity of the situation seems overwhelming.
Give me an update when you can, especially if you continue to write your blog (which is Japanese for standup). I pray that you continue the “good fight”, continue to get better and continue to be lifted by those that love you.
Don
22.8.10
Inger My Swedish Massage Therapist
My Swedish masseuse without fail orders me onto the table that has now become a permanent fixture in my office. This daily regimen I think is the reason I have my mobility back. With a firm discipline and loving touch only my Inger has she works selected spots, pump points, to jump start my lymph system and flow from lower to upper half. She now has it moving predictably and last week I passed another milestone in wardrobe, getting back into my loafers which I almost retired thinking that would never happen just the week before. Without this care my condition would likely force me into disability and have me in a motorize chair terrorizing neighborhood dogs. Rex asked me a strange question, ‘Do you know who Inger really is?’ ‘Of course,’ came my reply, ‘she’s my Swedish masseuse.’
Thursday July 29, 2010
What the hell happened to July? It was hot, we were busy and the days flashed by. Already it is 6 AM. Yesterday was loafer day, another honeymoon milestone. I got in my slip on shoes that I thought I never would with dress socks. I just wish this meant I was healing up, but the lymphedema is not the disease, just an unintended consequence of it. We must take our victories where we can get them and not dwell on the defeats. Even as I speak I am looking at the blog I started last weekend to publish this long winded diatribe. Jocelyn found it an emotional read. My responses from class mates (I shamelessly linked it on Facebook) and Family and Friends has been touching so far. It is a good way for me to raise awareness, and who cares; I mean what else would I do with this. Vanessa continues to learn manly ways. She took on the echo saber, our atomic gas powered hedge clipper and tentatively addressed some shrubs. After judging it was not all that bad she cleared me to use the tool and I knocked down 50’ or so. Saturday I did the entire line. Our bushes are tenacious fast growing thick stemmed deciduous monsters that no ordinary hedge clipper can conquer. But it is great exercise and I have decided some sweat therapy would do me good at this point. Last weekend Van also took on the weed eater, and ran it around to decide she did not care for the tool. I share her sentiment. For this I failed to get a picture, shame on me. Watching her delicate frame work the heavy stuff makes me smile and worry about her overdoing it. Fortunately I am well enough now to do a lot, just slower than before.
20.8.10
See Anything See A Doctor
One of the more disconcerting things to go through is solids coming out the end of Danger the One Eyed Ranger. This is just not good for a man. I was shocked when I first saw a ‘fleck’ in the bowl following draining the third arm of justice. Indeed, I did not believe it. The telltale blood in my urine started as only that, a small dark fleck. It repeated a few times and stopped. I unfortunately did not address it at the first. It did not even look like blood. I might not be in my present predicament had I gone to the doctor an asked for tests at first notice. After all, anything but urine ain’t normal in Poughkeepsie. This morning I jumped as I passed an object one inch long and looking like a miniature smoky link. By now I have had many strange passages and have even passed red blood in quantity so I am always surprised but not to panicked by what might come out. Basically, if something comes flying out and it is not urine go the doctor. Don’t wait for it to happen again, talk yourself into believing it is an isolated incident, fear the prognosis so much you keep it a secret. If you have a change in urgency, pain, whatever. Any change, even minor in your main drain is nothing to mess with.
Making It A Family Affair
Thank you Bill Gates. Since I save but do not back up to another place daily I just lost my records from the last of July until this morning. Word, the program I dread lost some ‘converter’ and my 60 some pages were reduced to a few squares and squigglies. After some struggle I pulled the backup, which I had last done July 28 from a usb stick used for such purpose.
After trying to go pill free the foot issues came back so I am back on 2 gabs a day. Fortunately that is all. I do not require pain medication. I am back to working half days, and can do what ever I want with the 12 hours left over. Inger sees me daily, and has added time for a daily devotion to our regimen. It is now a Family gathering time in my office. I jump up on the table, Inger sits in my chair and Snickers comes in for a place on her lap. After getting our heads on straight she hits the ‘pump points’, key nodes to wake up and get going in the morning. As a result I can wear normal human clothes and even can get into my slip on shoes, the tightest fitting I have. I can go about 12 hours in the stockings and have gone a day without. I have walked a mile recently and am working about the house. And so it goes, she gathers up the bible and her devotion book, I turn down the radio. Snickers comes in and says verbally, 'I'm here and this was not on my schedule last year at this time and I am not sure how I feel about it', and Inger lifts the bible and makes room on her lap. The cat jumps on, the daily reading is announced and away we go. Given Inger's particular Christian faith, we read a lot of Paul's letters. Following devotions the cat jumps down and returns to her schedule. Inger sets about the process of using massage techniques used for MLD (manual lymph drainage). With a steadfast expression and firm hands she presses and works the points she is trained to find and massage. It is not real fast work, but certainly goes at a good pace. First the left leg, then the right then back to the left. She works my feet if they are holding lymph. I watch her with a little despair in my core, this beautiful soul who cares so much for me that she would make this entire process part of her life. I am beyond blessed. No way to express it verbally or here. So I jump down today as Inger gives my calf a slap and says 'lookin' good'. I do have limitations, and a sharp pain in my lower left side tells me enough is enough. The pills are a pull down on me and pushing around legs tires me out sometimes but I will not dwell on the negative changes, for they bring a dark cloud within me.
After trying to go pill free the foot issues came back so I am back on 2 gabs a day. Fortunately that is all. I do not require pain medication. I am back to working half days, and can do what ever I want with the 12 hours left over. Inger sees me daily, and has added time for a daily devotion to our regimen. It is now a Family gathering time in my office. I jump up on the table, Inger sits in my chair and Snickers comes in for a place on her lap. After getting our heads on straight she hits the ‘pump points’, key nodes to wake up and get going in the morning. As a result I can wear normal human clothes and even can get into my slip on shoes, the tightest fitting I have. I can go about 12 hours in the stockings and have gone a day without. I have walked a mile recently and am working about the house. And so it goes, she gathers up the bible and her devotion book, I turn down the radio. Snickers comes in and says verbally, 'I'm here and this was not on my schedule last year at this time and I am not sure how I feel about it', and Inger lifts the bible and makes room on her lap. The cat jumps on, the daily reading is announced and away we go. Given Inger's particular Christian faith, we read a lot of Paul's letters. Following devotions the cat jumps down and returns to her schedule. Inger sets about the process of using massage techniques used for MLD (manual lymph drainage). With a steadfast expression and firm hands she presses and works the points she is trained to find and massage. It is not real fast work, but certainly goes at a good pace. First the left leg, then the right then back to the left. She works my feet if they are holding lymph. I watch her with a little despair in my core, this beautiful soul who cares so much for me that she would make this entire process part of her life. I am beyond blessed. No way to express it verbally or here. So I jump down today as Inger gives my calf a slap and says 'lookin' good'. I do have limitations, and a sharp pain in my lower left side tells me enough is enough. The pills are a pull down on me and pushing around legs tires me out sometimes but I will not dwell on the negative changes, for they bring a dark cloud within me.
19.8.10
Super Heroes and Gettin' Old
Snap, pop, crackle goes the fabric as I pop the creases and bunches out of my thigh high atomic compression stocking. Actually it is practically package high. I have become very adept at peeling it on and off, a skill lost on many wearers. It does put me in mind of cereal sometimes though. The finished product is a manikin leg if all is done correctly. Getting them on is all about getting the heel in the right place to begin with. I use lotion now, never have I been softer Inger pointed out as she did my MLD pump points. So the disease now allows me to be Spandex Man, or Soft Leg, Rice Krispys Man, Manikin Man, Smooth Foot among potential super hero personas. The list is potentially endless. Mom used to set out on a neighbors patio in the front of her building with the other single ladies. Often times they would engage in conversations about their health or about someone they know, or someone known by someone they know, or sometimes someone they have no idea who they are. Paul likes to remind me that as we get older us guys are sounding increasingly like Mom and her octogenarian friends. At a recent outing visiting with other bladder cancer victims I listened as the acronyms, pharmaceutical names, precise dosages and gory detail rolled out. I now understand that this is an important part of the process of coping with age, pain and disease. While I abhor the practice of going into minute detail, I do feel a little endorphin rush sometimes when I am sharing it. There is a sort of third person fascination with my own plight going on here. Mother nature at work I think.
18.8.10
The Day I First Started Sharing My Journal July 28
July 28, 2010 and I have started a blog and am putting this humble record on it. Having met a few folks and spoken with friends who express such an intense fear of the C word I hope my story can shed a little light on the experience and alleviate some of the unknown. If I can survive daily anyone can. My summer honeymoon continues with overall good health and reasonable mobility. The lymphedema is stable. I must wear my compression garments daily and take care. The left leg weakens quickly, often feels like it is asleep under the skin, swells quickly and as quickly drains with stockings or Inger’s magic fingers. My head hair has thinned on the top so I am using product left over from the past decade. The business world is typical July. It is 7 AM and I am going on the clock for another day of guerilla sales and talking with a lot of nice folks. What a job.
July 26, 2010 Fun, Music And Homeowner Hell
Monday and I arose a little before 4 am after an early down last night. The weekend was filled with many events, including Vanessa’s weedeater training, which she picked right up on and I failed to get a picture of. I am not sure how much of this she will do in the future. Friday night was symphony night with a singer, Belinda, Bella, Betty, Brin, Bonnie, hell, I can’t remember her name. Who cares, the evening was wonderful after a sweltering few days, with a picnic provided by my Son in Law and Daughter, their company and my relative comfort level. Saturday I engaged in sweat therapy, much to Van’s dismay, with a heavy dose of the heavy yard work. A hundred bucks at Lowes gives me materials to work with this week as I go down the list and find a few things not on it. Vanessa is in closet mode, a condition that only afflicts her every 7-10 years, so we will be remodeling two, and are already winding up the first on her accelerated schedule.
17.8.10
Shared Experience Lifetime Bond
I am reminded of my malady by my compression stockings. I roll them on daily, although I have gone without them for a couple of days at a time with no terrible result but a definite increase in the swelling. So they are a necessity still. I am quite adept now and nailing the heal position and with a minimum of snap crackle and pop getting them smoothly on my legs. How far I have come in just a few short weeks, I never thought I would be this well again. From not being able to get my left foot in any shoe and barely the box to functioning and a level that is rapidly headed for normal for me.
‘My Cancer since everyone has to know’ is my effort to share my experience voluntarily. Having the disease in any form makes you a topic of conversation. It is difficult to conceal and brings out the caring side in many people, as it did with Steve, a high school classmate whom I have only seen 3 or 4 times in 41 years and spoken briefly with. Through those decades we had our careers and children. He is now retired. The bonds we make as children last a lifetime. I can start a conversation with Steve 10 years from now almost as if I just talked with him yesterday. A familiarity resulting from our shared space and experiences is the basis for a lifetime connection. Word of my condition has now spread far and wide. I myself am certainly not shy about telling someone I have bladder cancer. How else will people I know or come in contact with ever have knowledge of it? I have come to accept that intimate details of my condition are already discussed, so I feel no compunction to be delicate. Bladder anything is not a delicate subject. Being aware of bladder cancer is important so you can act immediately whenever there is a change in your urine habits or blood in any form or any other foreign unknown that might appear in your stream. Just like I did not do.
Mike,
Well this is a blast from the past. I saw in the Elwood Call-Leader the Class of 70 is having their reunion this weekend along with my sister's Class of 65. It doesn't seem like a year since our 40th reunion. That was a fun evening.
I was talking to Debbie and Karen at Church and they said you were having some health issues, but were doing pretty good. I just wanted to let you know I was thinking of you and if there is anything I can do to help, please call.
I hope you continue your recovery and are soon back to full strength.
Steve M
Hi Steve,
Thank you for your caring. I can only say that with each step through life one encounters a new door and sometimes one is forced to step through. I can confirm that no matter what the life event, birth, death, sickness or success there is a hidden blessing so it is important to keep an open heart even when your feet are on fire and someone has jammed a fire hose up the ole gristle missle. That being said I completed a few rounds of chemo and continue to improve physically. Enough so that Vanessa produced a honey do list, which she calls a 'things we can do list'. I knew I was a lot better when I noted she wrote it two pages long on a legal pad instead of normal human letter size 8.5x11 paper. We must be returning to normalcy. Thank you and Debbie and Karen for your prayers and support. And believe me, I got your number if I need it. Be ready.
Kind Regards,
MikeC
‘My Cancer since everyone has to know’ is my effort to share my experience voluntarily. Having the disease in any form makes you a topic of conversation. It is difficult to conceal and brings out the caring side in many people, as it did with Steve, a high school classmate whom I have only seen 3 or 4 times in 41 years and spoken briefly with. Through those decades we had our careers and children. He is now retired. The bonds we make as children last a lifetime. I can start a conversation with Steve 10 years from now almost as if I just talked with him yesterday. A familiarity resulting from our shared space and experiences is the basis for a lifetime connection. Word of my condition has now spread far and wide. I myself am certainly not shy about telling someone I have bladder cancer. How else will people I know or come in contact with ever have knowledge of it? I have come to accept that intimate details of my condition are already discussed, so I feel no compunction to be delicate. Bladder anything is not a delicate subject. Being aware of bladder cancer is important so you can act immediately whenever there is a change in your urine habits or blood in any form or any other foreign unknown that might appear in your stream. Just like I did not do.
Mike,
Well this is a blast from the past. I saw in the Elwood Call-Leader the Class of 70 is having their reunion this weekend along with my sister's Class of 65. It doesn't seem like a year since our 40th reunion. That was a fun evening.
I was talking to Debbie and Karen at Church and they said you were having some health issues, but were doing pretty good. I just wanted to let you know I was thinking of you and if there is anything I can do to help, please call.
I hope you continue your recovery and are soon back to full strength.
Steve M
Hi Steve,
Thank you for your caring. I can only say that with each step through life one encounters a new door and sometimes one is forced to step through. I can confirm that no matter what the life event, birth, death, sickness or success there is a hidden blessing so it is important to keep an open heart even when your feet are on fire and someone has jammed a fire hose up the ole gristle missle. That being said I completed a few rounds of chemo and continue to improve physically. Enough so that Vanessa produced a honey do list, which she calls a 'things we can do list'. I knew I was a lot better when I noted she wrote it two pages long on a legal pad instead of normal human letter size 8.5x11 paper. We must be returning to normalcy. Thank you and Debbie and Karen for your prayers and support. And believe me, I got your number if I need it. Be ready.
Kind Regards,
MikeC
16.8.10
Lymphedema, Neuropathy, Cancer and Usetobee's
Up before the morning light and still cleaning in the garage. My physical condition is markedly improved even from last week. The Lymphedema in all areas is greatly reduced thanks in great part to the ever diligent efforts of Inger who still watches over me, encourages and inspires me and works me over just about every day, doing at least the pump points which are such a keystone part of MLD (manual lymph drainage).
The compression stockings are easier to wear and more comfortable as a result of the swelling going down. Since starting the pills for it I have not had another attack of neuropathy in my feet. I am still out of fear taking the pills but having a real hard time making the three a day routine. I never thought I would sit around discussing medications, symptoms, changes in habit, bowel issues etc. I know it is a favorite conversation amongst the chronically ill. I still have a hard time accepting that I am in that state yet at the BCAN (Bladder Cancer Advocacy Network) picnic I am sure I sounded like a little old lady, discussing my prognosis and care to date. Jim spoke of his medications and cited dosages, a detail I have found myself including in my conversation. In our defense the chronically ill get asked a lot of these questions. It is just not enough to say you have cancer. Everyone wants the details, starting with what kind.
Ah, enough of the early morning ramblings. I will slow the pace today and fuss with some diversions a little. Vanessa has finally acquiesced that I am well enough to trim the hedges, and I am wise enough to know it might take a lot longer than it use to. I will not be angry over usetobee’s today.
The compression stockings are easier to wear and more comfortable as a result of the swelling going down. Since starting the pills for it I have not had another attack of neuropathy in my feet. I am still out of fear taking the pills but having a real hard time making the three a day routine. I never thought I would sit around discussing medications, symptoms, changes in habit, bowel issues etc. I know it is a favorite conversation amongst the chronically ill. I still have a hard time accepting that I am in that state yet at the BCAN (Bladder Cancer Advocacy Network) picnic I am sure I sounded like a little old lady, discussing my prognosis and care to date. Jim spoke of his medications and cited dosages, a detail I have found myself including in my conversation. In our defense the chronically ill get asked a lot of these questions. It is just not enough to say you have cancer. Everyone wants the details, starting with what kind.
Ah, enough of the early morning ramblings. I will slow the pace today and fuss with some diversions a little. Vanessa has finally acquiesced that I am well enough to trim the hedges, and I am wise enough to know it might take a lot longer than it use to. I will not be angry over usetobee’s today.
July 21, 2010 Battle Status
July 21, 2010 and the heat is still on. The e mail to my cousin Jeff in answer to his question on my battle status sums up my state I think.
Hi Jeff,
Much better thank you. No longer require daily wrapping. Off pain meds and back at it full bore at present. Still walk with a stick and a step slower but that is alright. Got a handicap permit so we park in front of the gate at Verizon. Got to see D Matthews, S Winwood and Santana so far. Van made me up a honey do list, on a legal pad. I did the plumbing under the house, embellished with a string of obscenities. I might have pulled a muscle scraping gutters. Life is a wonderful thing.
As for my condition chemo is done. Scan had some positive light. Improvement to left kidney and reduced lymph node size by a little. We scan again 9/20, if no new spread and some more improvement we discuss going for the cure with the surgeons. Until then, soldier on like a good salesman and have a good time.
Mike
ps: and get some orders
Hi Jeff,
Much better thank you. No longer require daily wrapping. Off pain meds and back at it full bore at present. Still walk with a stick and a step slower but that is alright. Got a handicap permit so we park in front of the gate at Verizon. Got to see D Matthews, S Winwood and Santana so far. Van made me up a honey do list, on a legal pad. I did the plumbing under the house, embellished with a string of obscenities. I might have pulled a muscle scraping gutters. Life is a wonderful thing.
As for my condition chemo is done. Scan had some positive light. Improvement to left kidney and reduced lymph node size by a little. We scan again 9/20, if no new spread and some more improvement we discuss going for the cure with the surgeons. Until then, soldier on like a good salesman and have a good time.
Mike
ps: and get some orders
15.8.10
On Being Cat Strated
The heat is again oppressive. I am dripping with the AC blowing on me as I write this. Does talking about your medical stuff come with old age? Thinking back on the weekend picnic I can only imagine how the support group must be, with all the gory details likely including urine and fecal details out the wahzoo. My lymphodema is a point of curiosity. The muscle I apparently pulled scraping the gutters or lifting the punching bag or some other worthy endeavor is definitely getting better with the passing of days. I walked a mile or so this morning, unable to make the pace but able to make the distance.
I have also realized I now respond to non verbal commands from 4 legged family members.
The Cat’s Furtive Glance
Told me the door to the laundry room where the food and litter pan were was closed.
Told me that the other cat was on the porch and wanted in.
Told me she was afraid.
Told me she wanted to play.
Told me to leave her alone.
Told me she was hungry.
Told me she wanted out.
Told me she wanted in.
I’ve been cat strated as Rex would say.
Another unintended consequence is my new found relationship with the house cats, who graciously shared their domicile and keepers time with me during my darkest hours. They have trained me well as you can see. Ah if only we could bottle this technique that trains humans so effectively without vocalization of the commands. Of course that is not to say they are not crybabies at times but for the most part the cats are quietly adhering to their daily routine and schedule as close as they can, and training us to do our part to keep that schedule in order. They have both proven to be good company and I am glad they are part of the family and all of that, but there is certainly something quite different about these two. Our house cat previous to these two was Claws, a Siamese of sorts that lived nearly 20 years, ruling inside and out with fully armed toes (hence his name). From a kitten I (first ran over HIM with my truck) trained him like I would dog and started his life with a daily dose of German Shepherd in the garage until he got use to it.
These two cats have resisted my efforts to treat them with the same glory. I find myself trained like a dog. So it is that the cat can command and I will respond with no more than a furtive glance.
I have also realized I now respond to non verbal commands from 4 legged family members.
The Cat’s Furtive Glance
Told me the door to the laundry room where the food and litter pan were was closed.
Told me that the other cat was on the porch and wanted in.
Told me she was afraid.
Told me she wanted to play.
Told me to leave her alone.
Told me she was hungry.
Told me she wanted out.
Told me she wanted in.
I’ve been cat strated as Rex would say.
Another unintended consequence is my new found relationship with the house cats, who graciously shared their domicile and keepers time with me during my darkest hours. They have trained me well as you can see. Ah if only we could bottle this technique that trains humans so effectively without vocalization of the commands. Of course that is not to say they are not crybabies at times but for the most part the cats are quietly adhering to their daily routine and schedule as close as they can, and training us to do our part to keep that schedule in order. They have both proven to be good company and I am glad they are part of the family and all of that, but there is certainly something quite different about these two. Our house cat previous to these two was Claws, a Siamese of sorts that lived nearly 20 years, ruling inside and out with fully armed toes (hence his name). From a kitten I (first ran over HIM with my truck) trained him like I would dog and started his life with a daily dose of German Shepherd in the garage until he got use to it.
These two cats have resisted my efforts to treat them with the same glory. I find myself trained like a dog. So it is that the cat can command and I will respond with no more than a furtive glance.
14.8.10
July 15, 2010 Positive Signs And Cutting Cheese
My scans this week were ‘positive’. No new spots showed up, some reduction in the lymph nodes and some improvement in the left kidney, which I either did not know or forgot needed improvement. Scan again September 20 and meet that day to discuss possibility of talking with the ‘Surgeons’, or urologists.
Physically I might have pulled a muscle last week end or before working on the house. I seem to be improving as the days past, but much of this past week I struggled with a lower left front very sharp pain. This the result of my continued improvement. I love to joke that shortly after we celebrated my ability to wear two shoes Vanessa presented a honey do list done not on regular size paper, or letter size, but legal size. I have only glanced at it from a distance, as the writing is small and the page is full. I am not even sure how many pages there are. It matters not, there is enough low hanging fruit to work on for sure.
Along with feeling better is a return of our bantering, that thing that drives both of our daughters crazy. ‘Do you want crackers and cheese?’ she called out the door. ‘No thank you’ came his reply. Of course that meant not now but probably later in this case. And it was only a couple of hours later when he found the cheese, one side cut jaggedly in the drawer. He set it out on the counter, looked about for an available cutting board, found it and then turned to the drawers behind him. ‘Cheesecutter’ he thought, ‘where would that be?’ He assessed the likelihood, reviewed the contents of the drawer stack in his mind, figured the location to be at the bottom for lack of use, pulled up a mental picture of the device and reached for the third handle down. As he pulled the drawer open he knew he must strike quickly. The drawer is filled to the brim with various tools for kitchen use in a kitchen where basically at most 6 tools are used efficiently. He knew that the noise he would make would draw her attention, and she hated to have him rummaging through her drawers. Nevertheless, risking it, he plunged his hand into the melee towards the back, but there were so many layers, more than he had imagined. He passed over it once in his haste, then realized it and as he layed his hand on it she turned the corner. ‘What are you looking for?’ ‘I found it’ came my sheepish reply. ‘No’ she insisted, ‘what are you looking for?’ ‘The cheese cutter’ I confessed. Clearly this was the answer she wanted. ‘Use the knife I used’ she said. ‘I like it cut thinner’ I replied. ‘The cheese cutter is too hard to clean, put it back,’ she ordered. ‘Well if is too hard to clean perhaps we should put it in with the rummage sale stuff,’ I offered. A gravelly quality came into her voice, which was lowered two octaves or so when she said ‘I’ll cut your damn cheese’. Well, Vanessa aka Inger has made huge sacrifices for me throughout this ordeal, and I know the emotional toll on her has been great, but her offer to cut my cheese for me just took me over the top. As I laughed hysterically I carefully returned the too hard to use but we have to have it cheese cutter to it’s sacred berth in the third drawer down she cut my cheese. After wacking off a few hunks she stuck a plate with the stack under my nose and said ‘here’. As one was about 1/4" thick I moved to get the knife and cut it thinner. Again with the exorcist voice ‘don’t even think of cutting your cheese’ ‘But I want it thinner’ I pleaded. ‘Well you have to use a cheese cutter to get it any thinner’ came her terse reply. I retreated and ate my cheese and crackers just as Henry VIII must have ate his, tearing off chunks and thumbing down on the cracker. Banter is another sign of returning to normalcy.
Physically I might have pulled a muscle last week end or before working on the house. I seem to be improving as the days past, but much of this past week I struggled with a lower left front very sharp pain. This the result of my continued improvement. I love to joke that shortly after we celebrated my ability to wear two shoes Vanessa presented a honey do list done not on regular size paper, or letter size, but legal size. I have only glanced at it from a distance, as the writing is small and the page is full. I am not even sure how many pages there are. It matters not, there is enough low hanging fruit to work on for sure.
Along with feeling better is a return of our bantering, that thing that drives both of our daughters crazy. ‘Do you want crackers and cheese?’ she called out the door. ‘No thank you’ came his reply. Of course that meant not now but probably later in this case. And it was only a couple of hours later when he found the cheese, one side cut jaggedly in the drawer. He set it out on the counter, looked about for an available cutting board, found it and then turned to the drawers behind him. ‘Cheesecutter’ he thought, ‘where would that be?’ He assessed the likelihood, reviewed the contents of the drawer stack in his mind, figured the location to be at the bottom for lack of use, pulled up a mental picture of the device and reached for the third handle down. As he pulled the drawer open he knew he must strike quickly. The drawer is filled to the brim with various tools for kitchen use in a kitchen where basically at most 6 tools are used efficiently. He knew that the noise he would make would draw her attention, and she hated to have him rummaging through her drawers. Nevertheless, risking it, he plunged his hand into the melee towards the back, but there were so many layers, more than he had imagined. He passed over it once in his haste, then realized it and as he layed his hand on it she turned the corner. ‘What are you looking for?’ ‘I found it’ came my sheepish reply. ‘No’ she insisted, ‘what are you looking for?’ ‘The cheese cutter’ I confessed. Clearly this was the answer she wanted. ‘Use the knife I used’ she said. ‘I like it cut thinner’ I replied. ‘The cheese cutter is too hard to clean, put it back,’ she ordered. ‘Well if is too hard to clean perhaps we should put it in with the rummage sale stuff,’ I offered. A gravelly quality came into her voice, which was lowered two octaves or so when she said ‘I’ll cut your damn cheese’. Well, Vanessa aka Inger has made huge sacrifices for me throughout this ordeal, and I know the emotional toll on her has been great, but her offer to cut my cheese for me just took me over the top. As I laughed hysterically I carefully returned the too hard to use but we have to have it cheese cutter to it’s sacred berth in the third drawer down she cut my cheese. After wacking off a few hunks she stuck a plate with the stack under my nose and said ‘here’. As one was about 1/4" thick I moved to get the knife and cut it thinner. Again with the exorcist voice ‘don’t even think of cutting your cheese’ ‘But I want it thinner’ I pleaded. ‘Well you have to use a cheese cutter to get it any thinner’ came her terse reply. I retreated and ate my cheese and crackers just as Henry VIII must have ate his, tearing off chunks and thumbing down on the cracker. Banter is another sign of returning to normalcy.
The BCAN
July presses on. Today I got my official Bladder Cancer Advocacy Network T Shirt. I chose the bright orange of course. Boasting leading the way on the front and admonishing those who see blood in the urine to see a doctor on the back I can only imagine how I must look to those who are ‘normal’ as I once was. As the seventeenth winds down to dusk, I have the Grand Dog here in the office with me. We are babysitting for the weekend. Went to the first BCAN (Bladder Cancer Advocacy Network) awareness day picnic today.
July 17 2010 marks the first national awareness day for the cancer. Met three other men, one a survivor since 96, one nearing the end I fear and a younger fellow with still a teen age daughter whom only recently had a neobladder installed. He had reached the point where he couldn’t pee. He discussed learning to pee by time, and building capacity. After some ribbing he admitted he was on about a 2 hour schedule. Although the bladder and 36 lymph nodes were removed he is still in some danger. While in the hospital a blood clot caused him to have open heart surgery only 3 weeks after his bladder surgery. Two major surgeries within six weeks. This started in April. I can see the value in talking with others who have the disease.
July 17 2010 marks the first national awareness day for the cancer. Met three other men, one a survivor since 96, one nearing the end I fear and a younger fellow with still a teen age daughter whom only recently had a neobladder installed. He had reached the point where he couldn’t pee. He discussed learning to pee by time, and building capacity. After some ribbing he admitted he was on about a 2 hour schedule. Although the bladder and 36 lymph nodes were removed he is still in some danger. While in the hospital a blood clot caused him to have open heart surgery only 3 weeks after his bladder surgery. Two major surgeries within six weeks. This started in April. I can see the value in talking with others who have the disease.
A Change In Lifestyle
With everyone I encounter gushing about my good color and condition, I have concluded I must have looked like shit the first 58.5 years of my life. It is therefore a tragic irony that now that I look so good I am so broken down I cannot take advantage of my new found charisma. Such is life I guess. July 17 is bladder cancer awareness day.
Vanessa and I discussed our future. Selling the home is a necessity. With it will come the end of our life style since we met. I see us transitioning to apartment dwellers, living a much more compact life. My tools and many of my toys are part of this life, and will go on to someone else either as gift or sale item. At best we might find an apartment with a small garage. I would then keep appropriate tools for minor maintenance and crafts like kiting, rockets, photography etc.
I kept the tools all these years thinking in a worse case scenario I could always get a maintenance job and tools would be needed. Now at my age and condition this will never be an option. Yet that need not be a bad thing. I was never that good with tools, usually leaving DNA behind with every project I undertook that required the use of them.
From the January diagnosis, February surgery, late winter and spring horrors, putting my shoes on the first of June (you couldn’t tell I have a tumor if you did not know) I would say I have completed phase one of my battle with this disease.
Perhaps I am now a little less stubborn given my experiences. I am certainly a lot more beholding and grateful to a lot of people.
Vanessa and I discussed our future. Selling the home is a necessity. With it will come the end of our life style since we met. I see us transitioning to apartment dwellers, living a much more compact life. My tools and many of my toys are part of this life, and will go on to someone else either as gift or sale item. At best we might find an apartment with a small garage. I would then keep appropriate tools for minor maintenance and crafts like kiting, rockets, photography etc.
I kept the tools all these years thinking in a worse case scenario I could always get a maintenance job and tools would be needed. Now at my age and condition this will never be an option. Yet that need not be a bad thing. I was never that good with tools, usually leaving DNA behind with every project I undertook that required the use of them.
From the January diagnosis, February surgery, late winter and spring horrors, putting my shoes on the first of June (you couldn’t tell I have a tumor if you did not know) I would say I have completed phase one of my battle with this disease.
Perhaps I am now a little less stubborn given my experiences. I am certainly a lot more beholding and grateful to a lot of people.
13.8.10
July 10, 2010 Is My Tumor Showing?
Here I sit, 5 am. If you didn’t know it, you would not be able to tell I had a tumor. This week was another giant leap in the return to normalcy. From daily work load to evenings and even early am writing, my routine has returned to even status with last year. Of course I still have physical limitations, and walk a lot slower, ever reminders to me of my condition, but in jeans and work shoes these go largely unnoticed. It is hard to describe the feelings in the left leg. There is a weariness there, to the bone, and tingling. Inger still must work me over on a regular basis. I have been working with the stockings. These are not for those who would sit all day, too much compression for that. My driving routines must now include more frequent stops to walk about. Otherwise the tightness causes pain in the foot and ankle. I carry a cane and sometimes must rely upon it and sometimes use it to slow the pace of those I am walking with. Everyone tells me I have ‘good color’ or ‘look great’. Some commend me on my courage, although I do not feel courageous. I am only trying to live a normal life. Normalcy must embrace my handicap and my disease for the remainder of my life here. So it is that you would not know by looking. Creating this illusion involves wearing Underarmour, or bicycle shorts as I am wearing today and high compression stockings, which I am putting on to match the need at this writing. One day this week I only wore one for the evening. However to keep the swelling under control they are part of my normal wardrobe. All this and Inger’s hard work and some days my legs are almost the same size.
12.8.10
Living With Forgetting
Although the reminders of my disease are constant and somewhat uncomfortable I am now in a period where forgetting about it is desirable. With a couple of weeks likely before we go for the scan to see what is up with the cancer I must closet the doomsday feelings, bottle up the hopes for a miracle and go about life as usual. This e mail exchange pretty well sums it up:
On Mon, Jul 5, 2010 at 8:27 AM, Debbie:
Hope you had a great holiday........
…..just wanted to touch base and wish you well,,,,
Enjoy your summer............its Mind over Matter remember
Debbie
To whit I responded:
Thank you. I am wearing regular shoes again, a girdle and rubber bands on my lower half, a great look I must say. Never the less with the help of a crooked stick I am stomping about. Had a great 4th here, but missed the big fireworks shows. Some of the neighbors went big time though. Did take a long convertible ride with the grand dog in tow to see her Mom and Brother down South. South of Columbus that is.
Finished chemo a couple of weeks ago. Still have most of my hair, totally unmanageable I must say. Will get scans later this month to see what has been accomplished. Filmed the bird fest at sunrise the other day and I simply cannot figure out how they can have so much to say so early in the morning. A veritable din. Thanks for keeping tabs on me. Mom left us with a drum full of photo's and some memento's. Van and I went through a bunch this weekend and I started scanning her better work, for posterity I guess. She cut a lot of heads off, viewfinder cameras the culprit, but she took a pot load of pictures throughout her married life so we are finding a lot of excellent work. Got lots of projects. Vanessa has a honeydo list legal pad size and the house needs another round of minor repairs.
Got lots of help and volunteers when needed and we take full advantage. I am significantly slower in all things physical. Basically, right now we are having fun. So I guess I am following your orders Doctor.
Mike (he said incorrigible, not incurable) C
And so it goes. Forgetting is easy if your mind is elsewhere. Life is a minute by minute affair for us all. Happiness is inside and sometimes requires a little digging to find. One cannot wait for it to come when needed. If it does not appear it must be made to happen inside. A fool never learns.
On Mon, Jul 5, 2010 at 8:27 AM, Debbie:
Hope you had a great holiday........
…..just wanted to touch base and wish you well,,,,
Enjoy your summer............its Mind over Matter remember
Debbie
To whit I responded:
Thank you. I am wearing regular shoes again, a girdle and rubber bands on my lower half, a great look I must say. Never the less with the help of a crooked stick I am stomping about. Had a great 4th here, but missed the big fireworks shows. Some of the neighbors went big time though. Did take a long convertible ride with the grand dog in tow to see her Mom and Brother down South. South of Columbus that is.
Finished chemo a couple of weeks ago. Still have most of my hair, totally unmanageable I must say. Will get scans later this month to see what has been accomplished. Filmed the bird fest at sunrise the other day and I simply cannot figure out how they can have so much to say so early in the morning. A veritable din. Thanks for keeping tabs on me. Mom left us with a drum full of photo's and some memento's. Van and I went through a bunch this weekend and I started scanning her better work, for posterity I guess. She cut a lot of heads off, viewfinder cameras the culprit, but she took a pot load of pictures throughout her married life so we are finding a lot of excellent work. Got lots of projects. Vanessa has a honeydo list legal pad size and the house needs another round of minor repairs.
Got lots of help and volunteers when needed and we take full advantage. I am significantly slower in all things physical. Basically, right now we are having fun. So I guess I am following your orders Doctor.
Mike (he said incorrigible, not incurable) C
And so it goes. Forgetting is easy if your mind is elsewhere. Life is a minute by minute affair for us all. Happiness is inside and sometimes requires a little digging to find. One cannot wait for it to come when needed. If it does not appear it must be made to happen inside. A fool never learns.
I Must Be Better It's Homeowner Hell
The neighborhood sounded like a TV war zone day and night with the pop of firecrackers and whistle of rockets along with occasional explosions leaving one wondering of personal injury or permanent hearing damage was involved. July 3 and we painted the barns. Vanessa made a list of tasks. Her shower drain fell apart under the house, who knows how long ago. I heard water under the house while she was hosing down and found it. Debating hundreds on a plumber or me in the crawl spaces as I write this. Homeowner hell. I try to not think about my prognosis, but I do not have a good feeling at this writing, and wonder if I will see another Christmas. I finished the 67 Mustang and it is on display. I finished the rocket kit and am preparing for a launch when the wind and weather and my energy cooperate. Building the kits has kept me occupied during down times, and at night when sleep evades me.
Using the mechanical skills and parts of the brain required to do the job has been good for me as well. I do not have the skill of the artist, but I do have the will. Each model has obvious flubs and flaws in the trim and finish department, traditionally one of my weaker areas. Over the 4th we traveled to Mom L’s with the grand dog, painted the barns (Vanessa did the heavy lifting), scraped gutters for paint (Vanessa did the heavy lifting) and went through the boxes of Mom C’s photos and memorabilia sorting out the savers. I scanned some of the photos in as a start. All in all it was a very productive 3 days for a couple of old folks. We did miss the fireworks this year. So the week end ended with us too pooped to pop, so to speak. The heat is back with a vengeance, reaching 99 here yesterday.
Using the mechanical skills and parts of the brain required to do the job has been good for me as well. I do not have the skill of the artist, but I do have the will. Each model has obvious flubs and flaws in the trim and finish department, traditionally one of my weaker areas. Over the 4th we traveled to Mom L’s with the grand dog, painted the barns (Vanessa did the heavy lifting), scraped gutters for paint (Vanessa did the heavy lifting) and went through the boxes of Mom C’s photos and memorabilia sorting out the savers. I scanned some of the photos in as a start. All in all it was a very productive 3 days for a couple of old folks. We did miss the fireworks this year. So the week end ended with us too pooped to pop, so to speak. The heat is back with a vengeance, reaching 99 here yesterday.
New Realities And The Joy Of Underwear
July One 2010 and I am still alive. Inger came in with a grin, announcing ‘I just had my hands in the freezer, I’m ready for ya’ a couple of days ago. I can now mount my compression stockings on my own without the aid of devices like the slip on foot cover or rubber gloves. I am up to 12 hours in them, putting in full work days. Vanessa drove me on a door to door in H City this week. Yesterday I had lunch with Jocelyn in Indy. Before the cancer this was semi regular for us. It felt good to do it again. I am working at returning to normalcy with each passing day. The new reality incorporates my handicap, along with preferred parking in handicapped zones.
An interesting unintended consequence of my disease is the underwear upgrade. Until recently my underwear experience was limited to the standard Hanes or Fruit of the Loom fare in underwear. I was unaware that underwear existed that provided cushy luxurious fits. Of course upgrading undies from what I wore my entire life never entered my mind, but the need for the right fit for support and protection of my damaged package and lymph filled left leg created a need, and now my drawer is beginning to fill with these most comfortable garments, boxer style, some loose fit, some smooth. Who would have known! I have to say do not wait for cancer to explore some things, better underwear being one of them. During the day my standard outfit has me covered in spandex from the navel down, with bike shorts or Under Armour and the compression stockings. It is nice to have a little personal luxury thrown in. I have worked at improving this entire process. I now dress without rubber gloves or silk slip on socks. I have come to rely on the stockings for my mobility.
An interesting unintended consequence of my disease is the underwear upgrade. Until recently my underwear experience was limited to the standard Hanes or Fruit of the Loom fare in underwear. I was unaware that underwear existed that provided cushy luxurious fits. Of course upgrading undies from what I wore my entire life never entered my mind, but the need for the right fit for support and protection of my damaged package and lymph filled left leg created a need, and now my drawer is beginning to fill with these most comfortable garments, boxer style, some loose fit, some smooth. Who would have known! I have to say do not wait for cancer to explore some things, better underwear being one of them. During the day my standard outfit has me covered in spandex from the navel down, with bike shorts or Under Armour and the compression stockings. It is nice to have a little personal luxury thrown in. I have worked at improving this entire process. I now dress without rubber gloves or silk slip on socks. I have come to rely on the stockings for my mobility.
11.8.10
Summer Officially 2010
Tuesday and now officially summer here. Monsoonal rains continue to pour each day with last night being the worse yet. July 17 is Bladder Cancer Awareness Day. I signed up for a picnic. Again, a club I never ever considered being part of and here I am. Yesterday Van and I were the only ones for most of our time in the infusion center. Due to my lack of white blood cells I was unable to have chemo. OK by me, not sure it is working anyway at this point. I am still very tired most of the time, and can only attribute that to the last medication I am still taking. Gabapentine lists that first on side effects. Hopefully I can end the dosage now that chemo is coming to an end.
Friday and Van took off at noon for her annual sorority bash in Michigan City. They are holding it at the casino hotel there, trendy. Although she always assures me she will call when she arrives, now at this hour she has surely been there a while and no call. Certainly another indication of a return to normalcy I think.
Another neighbor dropped in to talk with me and assure me that I was on their regular prayer list and that made a difference. What a neighborhood I live in. Dale M again mowed the yard today.
I find I can motor around better as the days go by, but the left leg is weak and aches constantly with or without the stocking on. A constant reminder of the cancer within carried with me. How nice.
Twice this week my normal every two hour urine extravaganza has included discharging flakes of dried blood I think, although I can only say from the sensation they are solid and have not fished one out for analysis. Makes me wary of the entire process frankly but there is no holding back.
Work is also returning to normal. I can still overdo it, and try to measure myself. The stockings are severe in case I did not mention it. Now I guess is my second week, although it is easy for me to loose track. I know Van is laundering them in a rotation and has a place set up to store them. I stowed the wrapping materials in the closet as the stockings seem to be doing the trick along with Inger’s daily work over. She also is gone this week end so I will be self massaging. I know that doesn’t sound right, but it is part of the disorder, MLD, manual lymph drainage, or to put it another way, go play with yourself. Nothing about bladder cancer is socially acceptable, even the unintended consequences like lymphedema it seems.
Jennifer is heading this way for the weekend, and Jocelyn is coming in tomorrow. Vanessa said I did not need any quiet reflection time while she was gone and they all made these arrangements to assure I would not. For me, what fun, as always I will go with the flow.
Friday and Van took off at noon for her annual sorority bash in Michigan City. They are holding it at the casino hotel there, trendy. Although she always assures me she will call when she arrives, now at this hour she has surely been there a while and no call. Certainly another indication of a return to normalcy I think.
Another neighbor dropped in to talk with me and assure me that I was on their regular prayer list and that made a difference. What a neighborhood I live in. Dale M again mowed the yard today.
I find I can motor around better as the days go by, but the left leg is weak and aches constantly with or without the stocking on. A constant reminder of the cancer within carried with me. How nice.
Twice this week my normal every two hour urine extravaganza has included discharging flakes of dried blood I think, although I can only say from the sensation they are solid and have not fished one out for analysis. Makes me wary of the entire process frankly but there is no holding back.
Work is also returning to normal. I can still overdo it, and try to measure myself. The stockings are severe in case I did not mention it. Now I guess is my second week, although it is easy for me to loose track. I know Van is laundering them in a rotation and has a place set up to store them. I stowed the wrapping materials in the closet as the stockings seem to be doing the trick along with Inger’s daily work over. She also is gone this week end so I will be self massaging. I know that doesn’t sound right, but it is part of the disorder, MLD, manual lymph drainage, or to put it another way, go play with yourself. Nothing about bladder cancer is socially acceptable, even the unintended consequences like lymphedema it seems.
Jennifer is heading this way for the weekend, and Jocelyn is coming in tomorrow. Vanessa said I did not need any quiet reflection time while she was gone and they all made these arrangements to assure I would not. For me, what fun, as always I will go with the flow.
Joys Of Handicapped Parking
It’s Saturday and uncharacteristically hot for June. The cat is snoring in the corner, Van is on the phone with a Daughter and life is good. We went to a concert last night with 16,000 others. Discovered the joy of the handicapped parking placard while we were there. It put us right next to the gate in front of VIP, it don’t get better. Pondered at how many were really handicapped, saw a few, but, and I don’t mean to cast aspersions, perhaps there were a few that borrowed Mom’s or Grandma’s, or Aunt Millie’s card? Before hand we partied with our gracious host and hostess Jared and Jocelyn, along with friends Megan and Zach, good friends indeed. I did not make the end of the show, my feet in the bands finally getting the best of me and Van seemed agreeable to go. Overall it was a resounding success and proved another joy I can partake of with my handicap. Van’s Church will let me use a wheel chair whenever I need one but I think I will try the lawn next time, get in early, buy their high priced beer and park in front of a jumbotron. Having seen Dave Matthews again I can say my life is truly complete to this point. .
10.8.10
Compression Stockings
Manikin legs, what else can you say. Compression stockings will be part of my life going forward. These cynical devices, made in Germany I understand are like rubber band hosiery. One has to wonder what diabolical or horrible thing this fabric was developed for in the first place. Now 4 days after getting them I was able to put them on without help or incident this morning. Turn them inside out except the foot end, locate the heel, stretch, push in with silk footsie on to make it easier then roll on stocking. Mine are particularly compressing. Manikin legs, it is a handicap. This is part of my new reality, my revised normalcy.
I talked it over a little with Jennifer last night. She seemed to accept it as well. It cannot be a matter of worse or better, it has to be that it is just different, yet as close as we can make it to the old normalcy.
I talked it over a little with Jennifer last night. She seemed to accept it as well. It cannot be a matter of worse or better, it has to be that it is just different, yet as close as we can make it to the old normalcy.
Mid June 2010 Returning To Normalcy
Friday has come again. Worked more this week, did pretty good, judging by the mess on my desk. Today was another step back to normalcy according to Van, as we went to the air show media day just as we have in the past. Restoring lost traditions is important to the Wife. The annual routine includes certain things that we just do, and we missed several months here of doing things we just do. So she felt good today about our outing. For me it was nothing like it was before. My snausage left leg is a true pain in the arse among other places. As I hobbled in and she waited patiently at the gate I felt remorse at the fact that normalcy now included me being handicapped. It is a bitter pill.
Saturday and normalcy again was the theme of the day as I participated in recycling, breakfast, a movie date in the afternoon and a dinner out. Reality returned upon arriving home to have my legs re-wrapped for the night to hold down the swelling. I continue to find reasons why it would be most merciful for me to meet an early end and let my Family get on with their lives. From the stress on my Daughters to the physical pain my Vanessa endures in my treatment regimen, the reasons accumulate for me to find that elusive cliff to drive off of. Yet there are no cliffs in Indiana, so we soldier on for another day.
June 15 Tuesday and the monsoonal rains continue each evening. Despite the heat and gloom I find myself in good spirits this morning after chemo. Dinner with the H family last night was fun and I did not have to be wrapped, and great break. Sunday I went to Van’s Church for the Bible School Program. While there during prayers and praises Gracey shouted out she was glad to have Mike back among us. I replied it was thrilling to once again be able to wear two shoes. This celebration carried on at Dr. H’s Monday session. He noted I was wearing my Bob Marley shoes. The infusion nurse danced with me to celebrate. After chemo I got my compression stockings, and we are talking compression. I will have to wear them for a while to judge if we have the right ones and if they do the job. There are varying degrees of compression, and universal understanding that no matter what they are not worn for comfort.
Normalcy, I thought a lot about this after Vanessa mentioned it. Over the week end we took in a matinee, dined in a nice restaurant, went to Church together, slept in the same bed for most of one night, worked in the garden together briefly, went to the June Jamboree, a local festival and had our annual K Burger, an inviting gastronomic gamble each year and had our weekly Sahm’s night, a local watering hole with a Friday well drink special. On the whole a very active and normal weekend for us in June and one Vanessa I think took great strength from. So normalcy has a place of importance that supersedes my being handicapped. My Skype calls with Rex have evolved into something like drop in visits, with easy conversation and so many unspoken understandings and courtesies. You would think we were Brothers. So it is probably a good thing I do not have a convenient cliff for my Family and Friends which makes it a good thing for me.
Saturday and normalcy again was the theme of the day as I participated in recycling, breakfast, a movie date in the afternoon and a dinner out. Reality returned upon arriving home to have my legs re-wrapped for the night to hold down the swelling. I continue to find reasons why it would be most merciful for me to meet an early end and let my Family get on with their lives. From the stress on my Daughters to the physical pain my Vanessa endures in my treatment regimen, the reasons accumulate for me to find that elusive cliff to drive off of. Yet there are no cliffs in Indiana, so we soldier on for another day.
June 15 Tuesday and the monsoonal rains continue each evening. Despite the heat and gloom I find myself in good spirits this morning after chemo. Dinner with the H family last night was fun and I did not have to be wrapped, and great break. Sunday I went to Van’s Church for the Bible School Program. While there during prayers and praises Gracey shouted out she was glad to have Mike back among us. I replied it was thrilling to once again be able to wear two shoes. This celebration carried on at Dr. H’s Monday session. He noted I was wearing my Bob Marley shoes. The infusion nurse danced with me to celebrate. After chemo I got my compression stockings, and we are talking compression. I will have to wear them for a while to judge if we have the right ones and if they do the job. There are varying degrees of compression, and universal understanding that no matter what they are not worn for comfort.
Normalcy, I thought a lot about this after Vanessa mentioned it. Over the week end we took in a matinee, dined in a nice restaurant, went to Church together, slept in the same bed for most of one night, worked in the garden together briefly, went to the June Jamboree, a local festival and had our annual K Burger, an inviting gastronomic gamble each year and had our weekly Sahm’s night, a local watering hole with a Friday well drink special. On the whole a very active and normal weekend for us in June and one Vanessa I think took great strength from. So normalcy has a place of importance that supersedes my being handicapped. My Skype calls with Rex have evolved into something like drop in visits, with easy conversation and so many unspoken understandings and courtesies. You would think we were Brothers. So it is probably a good thing I do not have a convenient cliff for my Family and Friends which makes it a good thing for me.
Sometimes Life Is A Gas
It is now June 10. Today I had a new experience. Inger, my Swedish masseuse, had gas. I cannot describe the feeling of entrapment, laying on the table, her warm hands pushing and twisting about my torso to enliven my lymph glands while silently passing what can only be described as silent fart bombs.
9.8.10
The Return Of Mikey Two Shoes - A Time For Celebration
The first of June 2010 and a time for great celebration has come. I can wear two shoes. Yes, it was a real feat, so to speak. For a while I wore my work out sneakers, snug fitting on a good day. But I had to change to my worn and beaten pair that only a few months ago I contemplated throwing away. My left leg is still half again as large as my right, and my left foot is bloated as if decaying road kill with fluid that can be manipulated and squeezed in a most macabre fashion. Never the less, the fact is I can wear two shoes, one much looser than the other. My right foot also has fluid pockets collecting and continues to be a concern. Fortunately Inger, my Swedish masseuse is dedicated to controlling that situation and works tirelessly at it. I told everyone I encountered about my two shoe accomplishment. I did not expect an enthusiastic response and only got a couple. The import of this feat is lost on most who take two shoes as just a part of life. I am thrilled to say it is now once again a part of mine on occasion. It is certainly yet to be a fixture daily. I still must fall under Inger’s pained yet delicate touch daily and endure wrapping at night. I have been measured for compression stockings, giving my legs that manikin look. They should arrive this week. It is possible I could return to the driving range this summer.
As for the cancer so far the chemo has not worked per Dr. H. I could quit any time, but he recommended we complete the process. I have two more, and find they are increasingly difficult to endure. Time before last with the carbo and gem I suffered a large knot at the infusion point, took antibiotics for a week and had to make provisions for warm compress application several times a day to get it under control. In addition my hair on my head is definitely thinning, with an increasingly prominent bald spot in the front. Never the less, I understand process of all things in this disease. I will complete the chemo regimen and we will go from there because that is the process. On the positive side no new spots were noted and nothing has grown bigger (cancer wise).
As for the cancer so far the chemo has not worked per Dr. H. I could quit any time, but he recommended we complete the process. I have two more, and find they are increasingly difficult to endure. Time before last with the carbo and gem I suffered a large knot at the infusion point, took antibiotics for a week and had to make provisions for warm compress application several times a day to get it under control. In addition my hair on my head is definitely thinning, with an increasingly prominent bald spot in the front. Never the less, I understand process of all things in this disease. I will complete the chemo regimen and we will go from there because that is the process. On the positive side no new spots were noted and nothing has grown bigger (cancer wise).
8.8.10
May Ends - Does C Mean Contagious?
May has ended and my e mail reply to a friend sums it up for me;
Thanks Kathy for the cheer up video and your continued spiritual support. My cancer has not improved, however it has not gotten any worse. I am adjusting to very limited mobility for the first summer of my life. I can now park in the handicapped spaces without remorse and legally and I have even negotiated a few stores on the provided hover round or wheel chair. My how life changes. We continue to hang in and await what tomorrow will bring. Hopefully improved mobility as time goes on. In the immortal words of Super Chicken 'We knew the job was dangerous when I took it.' And there is no such thing as fail to Tom Slick
The neighborhood has proven to be such a family. Dale has taken over lawn mowing and never has the yard been so well quaffed. Bob and Jim are in the wings ready to jump in whenever needed. My Shop seems to be itching to help with whatever is needed. Given this static situation I will likely scale back on this diary until I have some other profound thought or something new to report. Each day without progress is a day of additional risk of complications, from infection to heart failure, I run the gambit of possibilities at this point. This I do not discuss with Vanessa or the Daughters. Sometimes I cannot help but think the continued misery I am put through is a prelude for what is to come in my closing days and weeks on this earth. I wonder if I will be here to feel the autumn breeze.
Only time will tell.
Last night after therapy on the pump we rode with the top down. And in the late night went home that way, what a treat. My emotions got the best of me when I had to face retaping, and I made Vanessa sad because nothing she could do could make it better and all she could do was make me uncomfortable, because that is part of it. Compression bandaging is not meant to be easy on you.
It has been a few days since I wrote last and some things came up worth mentioning. First, there are a lot of people that look at you with disdain as you maneuver the aisles in the store provided electric vehicle, straining under the 220 lb load, far beyond it’s design but well below what it has seen in it’s day for sure. On the other hand there are those that give a kind smile or feel good about helping if called upon. Don’t be shy with cancer is key here, or with any handicap. Second, some treat me and Vanessa as if we were contagious. Talking with Jared I found it impossible to put into words what it is like to have a foreign body growing in your body and spreading microscopically clones of itself to neighboring body structures. Vanessa has sensed in many encounters with acquaintances a certain remoteness. Do not feel bad about being contagious in some folks minds. The very fact it is in their minds is reason enough not to associate with them and this C word solves the entire problem for you. This week Hollywood mourns the passing of Gary Coleman and Dennis Hopper, there are a bevy of Troops marching at the 500 and life goes on.
Stopped and saw David, curled in a fetal position in a room at 100 plus under a blanket in full long sleeve dress. The drugs were holding back his pain. Yet he recognized my cane and asked me if I was in an accident, an old standing joke he loved to hit me with.
Vanessa and I dined with the Nieces and Sisters at Dave and Julie’s place in the shade with melt in your mouth barbeque and the race on the radio, Wow. Met up with my cousin Jeff C briefly at his place where he had a major party in progress, his annual Memorial Day Ride crowd. Another unintended by delightful consequence of the disease is developing a friendship with Jeff.
‘Do you feel cancery today?’ ‘No,’ came the emphatic answer. But that is just not so, and he knew it.
Thanks Kathy for the cheer up video and your continued spiritual support. My cancer has not improved, however it has not gotten any worse. I am adjusting to very limited mobility for the first summer of my life. I can now park in the handicapped spaces without remorse and legally and I have even negotiated a few stores on the provided hover round or wheel chair. My how life changes. We continue to hang in and await what tomorrow will bring. Hopefully improved mobility as time goes on. In the immortal words of Super Chicken 'We knew the job was dangerous when I took it.' And there is no such thing as fail to Tom Slick
The neighborhood has proven to be such a family. Dale has taken over lawn mowing and never has the yard been so well quaffed. Bob and Jim are in the wings ready to jump in whenever needed. My Shop seems to be itching to help with whatever is needed. Given this static situation I will likely scale back on this diary until I have some other profound thought or something new to report. Each day without progress is a day of additional risk of complications, from infection to heart failure, I run the gambit of possibilities at this point. This I do not discuss with Vanessa or the Daughters. Sometimes I cannot help but think the continued misery I am put through is a prelude for what is to come in my closing days and weeks on this earth. I wonder if I will be here to feel the autumn breeze.
Only time will tell.
Last night after therapy on the pump we rode with the top down. And in the late night went home that way, what a treat. My emotions got the best of me when I had to face retaping, and I made Vanessa sad because nothing she could do could make it better and all she could do was make me uncomfortable, because that is part of it. Compression bandaging is not meant to be easy on you.
It has been a few days since I wrote last and some things came up worth mentioning. First, there are a lot of people that look at you with disdain as you maneuver the aisles in the store provided electric vehicle, straining under the 220 lb load, far beyond it’s design but well below what it has seen in it’s day for sure. On the other hand there are those that give a kind smile or feel good about helping if called upon. Don’t be shy with cancer is key here, or with any handicap. Second, some treat me and Vanessa as if we were contagious. Talking with Jared I found it impossible to put into words what it is like to have a foreign body growing in your body and spreading microscopically clones of itself to neighboring body structures. Vanessa has sensed in many encounters with acquaintances a certain remoteness. Do not feel bad about being contagious in some folks minds. The very fact it is in their minds is reason enough not to associate with them and this C word solves the entire problem for you. This week Hollywood mourns the passing of Gary Coleman and Dennis Hopper, there are a bevy of Troops marching at the 500 and life goes on.
Stopped and saw David, curled in a fetal position in a room at 100 plus under a blanket in full long sleeve dress. The drugs were holding back his pain. Yet he recognized my cane and asked me if I was in an accident, an old standing joke he loved to hit me with.
Vanessa and I dined with the Nieces and Sisters at Dave and Julie’s place in the shade with melt in your mouth barbeque and the race on the radio, Wow. Met up with my cousin Jeff C briefly at his place where he had a major party in progress, his annual Memorial Day Ride crowd. Another unintended by delightful consequence of the disease is developing a friendship with Jeff.
‘Do you feel cancery today?’ ‘No,’ came the emphatic answer. But that is just not so, and he knew it.
Back To The Gym And Things Are So Swell
Wednesday and the gym was great. I probably lasted 25 minutes. Same old crew, two couples, one guy named Phil, one guy that always frowns with a wife with a landru like smile and a vigorous routine. I am not sure but I think Phil is looking a little slimmer. I minded my own with leg presses, ab work, dumbbells and a universal machine. I was too tired for light treadmill, going to have to build back up to it.
The warm weather and seeing people really drives my handicap home. With each passing day it becomes more difficult for me to contain my anger and frustration over my plight. I simply cannot win. My latest problem is due to the edema in the genital area and edema in the upper thighs I have worn through the skin on my inner thighs and cannot walk comfortably. I passed out in the afternoon, finding sleep an hour at a time or so in bed and the recliner. Inger came in from working n the yard planting and found the strength to work me over. Unwrapping and doing the MLD routine as required. Don’t touch demtestickles, whuteverudu as they say in some parts of Southern Indiana. That is our motto. Ah well, now I have to go pee. Tomorrow is another day so I will go on, with two female pads stuffed between my thighs for protection, just another night in paradise?
The warm weather and seeing people really drives my handicap home. With each passing day it becomes more difficult for me to contain my anger and frustration over my plight. I simply cannot win. My latest problem is due to the edema in the genital area and edema in the upper thighs I have worn through the skin on my inner thighs and cannot walk comfortably. I passed out in the afternoon, finding sleep an hour at a time or so in bed and the recliner. Inger came in from working n the yard planting and found the strength to work me over. Unwrapping and doing the MLD routine as required. Don’t touch demtestickles, whuteverudu as they say in some parts of Southern Indiana. That is our motto. Ah well, now I have to go pee. Tomorrow is another day so I will go on, with two female pads stuffed between my thighs for protection, just another night in paradise?
May 25, 2010 Ridin' With The Lortab
As I write this the dawn rises on May 25. So far I am feeling pretty good. After the long day yesterday we dined at Skyline and upon returning home I passed out for about 6 hours, awaking only for the mandatory draining of the bladder 3 or 4 times. At present I am riding the high of a Lortab, at mid point of its 4 hour window. Typing is getting a little shaky so it is time to take a break.
Today is Tuesday and another hour in the automatic Inger at physical therapy. It's just not the same thing to have the strange contraption panting and wheezing and it compresses and relaxes up and down my lower half. I could get used to it but not on the treatment table I must sit on. My leg has improved enough that I can walk farther with much less discomfort although I am far from being able to make more than a few hundred feet at a time. My feet are still too gnarly and bloated for normal shoes. The modified sandals with bungee cords and metal spring clips get comments from everyone, as well as the stick I carry that my Dad made of a vine at his river cottage so many years ago. I hope to feel well enough for the gym in the morning.
Today is Tuesday and another hour in the automatic Inger at physical therapy. It's just not the same thing to have the strange contraption panting and wheezing and it compresses and relaxes up and down my lower half. I could get used to it but not on the treatment table I must sit on. My leg has improved enough that I can walk farther with much less discomfort although I am far from being able to make more than a few hundred feet at a time. My feet are still too gnarly and bloated for normal shoes. The modified sandals with bungee cords and metal spring clips get comments from everyone, as well as the stick I carry that my Dad made of a vine at his river cottage so many years ago. I hope to feel well enough for the gym in the morning.
7.8.10
May 24, 2010 Still Finding Things To Be Thankful For
Monday May 24 was a busy day. I started around 9 am with scans and x rays. The meeting with Dr. H. my oncologist was less than promising, and I left discouraged. As it appears now, the chemo has had nil effect.
The business of pain appears to be the constipation issues related to the pain killers used back in February for the TUR (transuretral resection) and subsequent week of the giant catheter. Since that time, until I gained an understanding of dosages of laxative required to off set the stopping characteristics of the pain medicine I was caught in a cycle to taking pain meds for abdominal pain brought on by the pain meds, not the cancer. Scans and x rays show no change. While there are no new spots or significant growth of tumor and lymph land lump lying on a main lymphatic duct are still the same size as when we started. The Doctor said he did not know what to do. The maximum chemo dosage is 4 cycles. I have done two. Nothing to do but do the maximum and see what happens was his recommendation, unless I said I just could not take it. He continues to be concerned about my lymphedema and my openness to a severe life threatening infection. With each day the chemo fails to take effect and kill the cancer in the lymph nodes and reduce the swelling I am also at much greater risk for fluid build up in other areas, in particular the chest, which could lead to heart failure. I am carefully monitoring my arms and chest. No way to tell what the tumor is doing. Continued growth there could cause at some point internal bleeding. So my situation is precarious, more so with each passing day. While I so far can accept this emotionally, my Family is not doing so well with it.
The good news is I do feel better, no matter the cause, we are proactively working with the lymphedema using every available resource and nothing has grown or appeared new.
Additionally Randy, my tumor twin and Niece’s Husband is responding well to his chemo. On top of that I can return to the gym, which I am really looking forward to. Much to be thankful for as we go into the Summer.
The business of pain appears to be the constipation issues related to the pain killers used back in February for the TUR (transuretral resection) and subsequent week of the giant catheter. Since that time, until I gained an understanding of dosages of laxative required to off set the stopping characteristics of the pain medicine I was caught in a cycle to taking pain meds for abdominal pain brought on by the pain meds, not the cancer. Scans and x rays show no change. While there are no new spots or significant growth of tumor and lymph land lump lying on a main lymphatic duct are still the same size as when we started. The Doctor said he did not know what to do. The maximum chemo dosage is 4 cycles. I have done two. Nothing to do but do the maximum and see what happens was his recommendation, unless I said I just could not take it. He continues to be concerned about my lymphedema and my openness to a severe life threatening infection. With each day the chemo fails to take effect and kill the cancer in the lymph nodes and reduce the swelling I am also at much greater risk for fluid build up in other areas, in particular the chest, which could lead to heart failure. I am carefully monitoring my arms and chest. No way to tell what the tumor is doing. Continued growth there could cause at some point internal bleeding. So my situation is precarious, more so with each passing day. While I so far can accept this emotionally, my Family is not doing so well with it.
The good news is I do feel better, no matter the cause, we are proactively working with the lymphedema using every available resource and nothing has grown or appeared new.
Additionally Randy, my tumor twin and Niece’s Husband is responding well to his chemo. On top of that I can return to the gym, which I am really looking forward to. Much to be thankful for as we go into the Summer.
The Puppy Pads
Proving we are pack rats, not only is our medicated powder at least a decade old, likely more like 15 years plus as proven by the price tag from PharMor a long defunct drug store line, we use the puppy pads in stock for me to sit on as a protective barrier when needed. These pads were purchased for Molly, in her final years as she uncontrollably spotted. Of course the effectiveness was equivalent to pissing in the wind, and we eventually replaced the carpet we so valiantly tried to protect, but we did have a pack of puppy pads left over we could not bring ourselves to part with. Who was to know years later how handy they would be. I do not present the same challenge as the dog as to proper pad placement and so far have not scrapped one due to dribbling, only wear and tear for my swiveling my fat ass on one.
Inger My Swedish Massage Therapist
Sunday again and a new week ahead. I have a head cold I am trying to accelerate through the process. In addition I have some severe chafing on my inner upper thighs, further exasperating my attempts to walk and move about. My office now sports a massage table. This is another permanent addition to my remaining life on earth, living with lymphedema. Looking at it that way can be somewhat discouraging. Vanessa now has the role of Inger, my Swedish massage therapist. The sessions can be torturous but I understand they are necessary. We have a daily routine of an hour or two devoted to me and Inger rubbing me to accomplish MLD, or manual lymph drainage. Inger has to truly love me, for my old blubbery carcass is not something to look at on a good day, and with the distortions of the edema it is horrific. She has learned quickly and well. I have noted that any person who does lymphedema therapy has extremely cold hands to start. Inger gets an odd look in her eye and I swear a little smile when she says ‘this is gonna’ be cold’ just prior to laying her delicate hands on me. I am not sure I have mentioned it, but cold hands seem to be a trademark of my MLD therapists. Perhaps the shock of cold digits is considered important in moving the lymph or blasting the fibrosis that results. In any event I have accepted it at all levels. Only Inger at least makes a real effort to pre-warm, even though such exertions are frequently futile.
6.8.10
Tuesday, May 18th Dealing With It
I am writing this a little after 6A. Expanding bandage used for my leg wrapping hanging from the shower rod drying in the morning air. Pee in the toilet for a chance and hit the target, ah, life is good. My pain over the past few days has diminished. The swelling in my lower half has not gotten worse. I now wear spandex bike shorts, just the ones banned in my bike club Fat Men on Ten Speeds. I have to say I did not know what I was missing. Another standard wardrobe item not in my inventory just a few months ago is the panty liner, or pad, a feminine hygiene product since I am capable of dribbling. Perhaps all men should try this out and decide for themselves the merits of wings vs. non wing, ultra thin vs. thick and absorbent. Neither my Daughters nor my Wife ever discussed the finer points of these accessories, like how they can come unglued and roll over with the adhesive side facing your flesh, hair and the dukester in a man’s case. Nothing like peeling the wrong end of the pad off of you to brighten your day I can tell you. This is what the cancer does. It wants to humiliate you, beat you down, and take away your dignity and your pride. Well I guess in my case I always lacked in the dignity department and was never too proud so I can laugh at this crappy situation and all that it throws at me. After all the bike shorts are stylish and the compression they provide comforting, dripping in a pad beats the hell out of pissing my pants, in spite of the drawbacks. I hope I can maintain this improved condition. Vanessa really needs the break from putting up with my suffering, as do I. I know it helps my Girls as well.
Sunday, May 16, 2010
Van gorgeous in her stylish black skirt and tangerine jacket. She glows and walks with a graceful gate. I ponder my fate and the events of yesterday. Having to ride around as a handicapped person, who of course I am, is still pretty tough to take. On the other hand, parking in the convenient handicapped spots now that we have our placard is especially neat. My feet are getting a little better I think. Certainly my overall condition seems to be improved.
My Professional Team
As I have often said of this excursion, God hides in every bit of turmoil a blessing. My work team and Employer certainly fall in this category. With my change in routine the result will be a stronger Company with more security for all I hope. Nothing illustrates this more than this e mail exchange between me and Bruce, our Team Service Coordinator.
-From: Mike Courtney
…..Let me know what else you need as I am deskbound and happy to fill my day with whatever you throw at me.
Thanks so much for your help. I am so sorry I cannot contribute more, I know this has impacted your work load and so appreciate your support and help. On the other hand I am bound to keep calling and looking for stuff which will only pile more on you. But then, you have big, if not sore, shoulders.
Bruce to Mike:
Good Morning:
Glad that you are making the calls
The extra work load just means that it's hussle time, and that is good for all of us.
I will send this imformation on to Brad
Have a GREAT WEEKEND and PLEASE call if Debbie or myself can do anything for you.
Got ot go spraying for WEEDS
BRUCE
Piling on Bruce really doesn’t work out well and I suspect causes distress in my absence. He is a man of routines and does not like to get out of them. Yet my core function for the past 37 years has been to produce opportunities for billable hours, mostly for other people. I take pride in my ability to sell services that not only are vital to the Customer but produce meaningful, safe and good work for the coworkers I serve. I feel very close to all of them and very responsible for them. They have demonstrated through their outreach and offerings that they feel the same for me. With the support of my Employer and my team I am so far ahead of this game it isn’t funny.
-From: Mike Courtney
…..Let me know what else you need as I am deskbound and happy to fill my day with whatever you throw at me.
Thanks so much for your help. I am so sorry I cannot contribute more, I know this has impacted your work load and so appreciate your support and help. On the other hand I am bound to keep calling and looking for stuff which will only pile more on you. But then, you have big, if not sore, shoulders.
Bruce to Mike:
Good Morning:
Glad that you are making the calls
The extra work load just means that it's hussle time, and that is good for all of us.
I will send this imformation on to Brad
Have a GREAT WEEKEND and PLEASE call if Debbie or myself can do anything for you.
Got ot go spraying for WEEDS
BRUCE
Piling on Bruce really doesn’t work out well and I suspect causes distress in my absence. He is a man of routines and does not like to get out of them. Yet my core function for the past 37 years has been to produce opportunities for billable hours, mostly for other people. I take pride in my ability to sell services that not only are vital to the Customer but produce meaningful, safe and good work for the coworkers I serve. I feel very close to all of them and very responsible for them. They have demonstrated through their outreach and offerings that they feel the same for me. With the support of my Employer and my team I am so far ahead of this game it isn’t funny.
5.8.10
May 15, 2010 Handicapped In Public
Reality
Saturday, May 15, 2010 a beautiful day in the neighborhood for sure. We went to breakfast at the IHOP and then shopping for Van’s gardening supply. The cancer is cruel in all respects, and of course I choose to deny the limitations it places upon me until they are thrown in my face. Such was the case today as I was forced to use the little motorized scooters for handicapped folk to get about the stores. I understand the long term consequences with regard to pain if I overdo it. My macho man bravado has long since been stripped away in a most humbling manner. My very manhood is under assault. Yet I knew I wanted to participate in the shopping, not sit and mope in the parking lot, so I strapped on the little electric three wheeler with the basket, put my walking stick in the basket and took off through the sporting goods store looking for bicycle shorts for me that will serve as a girdle needed as part of my ongoing lymphedema therapy. The looks people gave me made me wonder if I looked upon the valiant drivers of these devices in the same way before I joined their ranks. A kind smile of pity, a look of bewilderment, (what does he have?), a look of sympathy and one of kindness. Children are of course particularly entranced, as I learned during my short stint on the crutches. It was a slap of hard reality and I could not help but cry a little when it was over, for the reality is I cannot walk any distance, and that stinks. I don’t want to be physically handicapped. I do not want a hover round. I object to this disease and all the complications that go along with it.
Saturday, May 15, 2010 a beautiful day in the neighborhood for sure. We went to breakfast at the IHOP and then shopping for Van’s gardening supply. The cancer is cruel in all respects, and of course I choose to deny the limitations it places upon me until they are thrown in my face. Such was the case today as I was forced to use the little motorized scooters for handicapped folk to get about the stores. I understand the long term consequences with regard to pain if I overdo it. My macho man bravado has long since been stripped away in a most humbling manner. My very manhood is under assault. Yet I knew I wanted to participate in the shopping, not sit and mope in the parking lot, so I strapped on the little electric three wheeler with the basket, put my walking stick in the basket and took off through the sporting goods store looking for bicycle shorts for me that will serve as a girdle needed as part of my ongoing lymphedema therapy. The looks people gave me made me wonder if I looked upon the valiant drivers of these devices in the same way before I joined their ranks. A kind smile of pity, a look of bewilderment, (what does he have?), a look of sympathy and one of kindness. Children are of course particularly entranced, as I learned during my short stint on the crutches. It was a slap of hard reality and I could not help but cry a little when it was over, for the reality is I cannot walk any distance, and that stinks. I don’t want to be physically handicapped. I do not want a hover round. I object to this disease and all the complications that go along with it.
On The Other Hand
It’s Friday and the week is nearly over. Tuesday I had chemo and was way out of sorts pretty much until yesterday afternoon. I cannot walk yet, as the pain in the bottom of my feet, while now manageable, prevents me from taking more than baby steps. Physical therapy Wednesday included an hour on the Flexitouch machine, an automatic massage device that runs 8 grand and of course is not covered by my insurance. My left leg is something of a water balloon, increasingly sensitive to touch. Van worked me over yesterday and I now where those sporty bike shorts with the padded seat as a girdle along with the wraps on both legs. My walking is excruciating at times, with a burning pain across the bottom of both feet. Therefore I walk in very short steps on a pair of rental crutches, setting feet flat with each step. Foot pain is inescapable. On the other hand clearly I am getting better. In a couple of weeks I will have completed a full treatment cycle. I still have my hair. I will get a CT scan and x ray to see what is going on with the cancer. For me it is not exactly a win win. If the chemo is not working, of course, that is not good for my long term prognosis, and I will join my Parents and all those dogs at a relatively young age. On the other hand I cannot help but remember that if the chemo is successful I will face horrendous surgery, being gutted like a fish. I will be left without the ability to have a sexual relationship with my Wife and without my bladder living with some sort of diversion or drain for the rest of my life. The cancer gives me no quarter in this regard, it is ‘part of it’. Oh well, we have the weekend to look forward to.
It’s 1:30 on Saturday, AM, took a nice walk down to the stop sign, about six hundred feet round trip, took a little while and Tucker drug me back, apparently she has four hollow legs. I find it so sad as I gaze across my lawn in the twilight with a brilliant clear sky filled with stars bright and twinkling. The air is clean and cool as I walk. Why shouldn’t we all as a species work to prevent our ultimate demise. Obviously we have to stop the families with 10 kids. Continued population means we will need another planet. Ah the lortab, and I ramble.
It’s 1:30 on Saturday, AM, took a nice walk down to the stop sign, about six hundred feet round trip, took a little while and Tucker drug me back, apparently she has four hollow legs. I find it so sad as I gaze across my lawn in the twilight with a brilliant clear sky filled with stars bright and twinkling. The air is clean and cool as I walk. Why shouldn’t we all as a species work to prevent our ultimate demise. Obviously we have to stop the families with 10 kids. Continued population means we will need another planet. Ah the lortab, and I ramble.
Rambling Through the Second Week of May and My Special Gift of Bob
Monday and I am back to work, but only 6 hours due to the drugs mostly. Foot pain has transformed to something of a lesser grade as I am able to walk with only a stick and no longer need crutches.. It took me all day to work up a couple of contractor submittals. Need to get back into call mode ASAP. Shop is busy so I am told.
Dinner was Vans chili. A most flavorful excursion for sure and I ate my fill. Bob my neighbor showed up at six or so. He had an urgency about him, no time to sit and chat, he had to get my lawn mowed because it is going to rain an inch or more tomorrow. There was no stopping him and his desire to help with my situation. I think since he keeps me high on his church prayer list he needs to do something material for me to ease his conscious having worked himself into feeling guilty because we haven’t asked for anything and he hasn’t jumped in. Bob is pure of heart with a humor that is much like mine but a vastly different family situation with lots more kids all grown now. He is a Grandpa many times over and I thanked him. He assured me I had a lot of people praying for me. And so he was off and mowed my yard. It seems nothing I could do in return could possibly be worthy in the face of his gift, a gift greater than any money can buy. A gift of love for someone he knows only through occasional over the fence talk through the years. Wow.
It’s Friday and the week is nearly over. Tuesday I had chemo and was way out of sorts pretty much until yesterday afternoon. I cannot walk yet, as the pain in the bottom of my feet, while now manageable, prevents me from taking more than baby steps. Physical therapy Wednesday included an hour on the Flexitouch machine, an automatic massage device that runs 8 grand and of course is not covered by my insurance. My left leg is something of a water balloon, increasingly sensitive to touch. Van worked me over yesterday and I now where those sporty bike shorts with the padded seat as a girdle along with the wraps on both legs. My walking is excruciating at times, with a burning pain across the bottom of both feet. Therefore I walk in very short steps on a pair of rental crutches, setting feet flat with each step. Foot pain is inescapable. On the other hand clearly I am getting better. The girls want to start something called ‘Piss On Bladder Cancer’.
In a couple of weeks I will have completed a full treatment cycle. I still have my hair. I will get a CT scan and x ray to see what is going on with the cancer. For me it is not exactly a win win. If the chemo is not working, of course, that is not good for my long term prognosis, and I will join my Parents and all those dogs at a relatively young age. On the other hand I cannot help but remember that if the chemo is successful I will face horrendous surgery, being gutted like a fish. I will be left without the ability to have a sexual relationship with my Wife and without my bladder living with some sort of diversion or drain for the rest of my life. The cancer gives me no quarter in this regard, it is ‘part of it’. Oh well, we have the weekend to look forward to.
It’s 1:30 on Saturday, AM, took a nice walk down to the stop sign, about six hundred feet round trip, took a little while and Tucker drug me back, apparently she has four hollow legs. I find it so sad as I gaze across my lawn in the twilight with a brilliant clear sky filled with stars bright and twinkling. The air is clean and cool as I walk. Why shouldn’t we all as a species work to prevent our ultimate demise. Obviously we have to stop the families with 10 kids. Continued population means we will need another planet. Ah the Lortab, and I ramble.
Dinner was Vans chili. A most flavorful excursion for sure and I ate my fill. Bob my neighbor showed up at six or so. He had an urgency about him, no time to sit and chat, he had to get my lawn mowed because it is going to rain an inch or more tomorrow. There was no stopping him and his desire to help with my situation. I think since he keeps me high on his church prayer list he needs to do something material for me to ease his conscious having worked himself into feeling guilty because we haven’t asked for anything and he hasn’t jumped in. Bob is pure of heart with a humor that is much like mine but a vastly different family situation with lots more kids all grown now. He is a Grandpa many times over and I thanked him. He assured me I had a lot of people praying for me. And so he was off and mowed my yard. It seems nothing I could do in return could possibly be worthy in the face of his gift, a gift greater than any money can buy. A gift of love for someone he knows only through occasional over the fence talk through the years. Wow.
It’s Friday and the week is nearly over. Tuesday I had chemo and was way out of sorts pretty much until yesterday afternoon. I cannot walk yet, as the pain in the bottom of my feet, while now manageable, prevents me from taking more than baby steps. Physical therapy Wednesday included an hour on the Flexitouch machine, an automatic massage device that runs 8 grand and of course is not covered by my insurance. My left leg is something of a water balloon, increasingly sensitive to touch. Van worked me over yesterday and I now where those sporty bike shorts with the padded seat as a girdle along with the wraps on both legs. My walking is excruciating at times, with a burning pain across the bottom of both feet. Therefore I walk in very short steps on a pair of rental crutches, setting feet flat with each step. Foot pain is inescapable. On the other hand clearly I am getting better. The girls want to start something called ‘Piss On Bladder Cancer’.
In a couple of weeks I will have completed a full treatment cycle. I still have my hair. I will get a CT scan and x ray to see what is going on with the cancer. For me it is not exactly a win win. If the chemo is not working, of course, that is not good for my long term prognosis, and I will join my Parents and all those dogs at a relatively young age. On the other hand I cannot help but remember that if the chemo is successful I will face horrendous surgery, being gutted like a fish. I will be left without the ability to have a sexual relationship with my Wife and without my bladder living with some sort of diversion or drain for the rest of my life. The cancer gives me no quarter in this regard, it is ‘part of it’. Oh well, we have the weekend to look forward to.
It’s 1:30 on Saturday, AM, took a nice walk down to the stop sign, about six hundred feet round trip, took a little while and Tucker drug me back, apparently she has four hollow legs. I find it so sad as I gaze across my lawn in the twilight with a brilliant clear sky filled with stars bright and twinkling. The air is clean and cool as I walk. Why shouldn’t we all as a species work to prevent our ultimate demise. Obviously we have to stop the families with 10 kids. Continued population means we will need another planet. Ah the Lortab, and I ramble.
May 8, 2010 Mother's Day
Sunday Mother’s Day and shooting pain in my toes on both feet bring me out of a shallow sleep. An ice pack quickly brought it under control. A promising outcome for sure that it helped. First pause in constant foot pain, able to walk about briefly without crutches but made them dogs hurt yet does the pause in the pain mean the new med is working? A wonderful brunch of exotic omelets, taters and waffles made by my Girls. Very continental indeed.
Accepting Help - Part Of The Safety Net
By nature and upbringing, I never asked for uncompensated help for much of anything. During Dad’s long sickness and the great strike in the early sixties we were reduced to a bland diet. Neighbors and others contributed when hearing of our plight and Dad was gracious accepting it. I am overwhelmed at the gracious outpouring of help when we need it. Jim spent an afternoon sharpening the mower blades and has once done the lawn like a professional. Phil has done the hedges and slipped in last week with a JD every five acre man would want and tilled the garden. Wow is all I can say. Many stand ready to answer any call or need. For the most part it is Vanessa’s safety net answering the call. I find that comforting going forward.
Pain, Edema, Meds and MLD
Saturday and I can’t walk due to the pain, but otherwise am in ok shape. The foot pain has transformed with the soles becoming the source for the discomfort. Clearly this is the chemo. So the saga continues that I shall experience the worst of those rarely reactions to my treatment as it progresses. Again, we knew the job was dangerous when we took it.
Still the fundamental Hoosier values set I was raised to live within and abide by cannot help but make me think perhaps God would have me suffer so for past transgressions. Of course such a line of thought is really an emotional cop out while you pine over loved ones lost and that past life in the shrouded incandescence of your memory.
Vanessa is now adding to her considerable resume lymphadema therapist as she takes charge of my at home program. At present I am not moving well, but there is some hope that diligent MLD will get me back in two shoes, albeit they might be two different sizes. I would then be a legend, greater that Tommy Two Shoes, known as the salesman with a choice of best foot to put forward, the shapely high arch of one, or the ogre troll mass of flesh of the other. Great.
This past week the foot pain reduced me to tears a few times. I know the toll this takes on Van and try not to do it in her presence, but I was overwhelmed. Nothing worse than foot pain, be it a broken or jammed toe or the immediate inflammation of the thousands of nerve endings on the bottom of your foot. So we have added another drug.
Pre-Cancer
Vitamin
Generic Zocor(low good number maintenance dose)
At this stage of treatment
Generic Zocor
Oxycontyn 5*
Oxycontyn 10*
Lortab (every 4-6 hours)
Antibiotic (ends today after 10 days)
Nuerotin (generic equivalent) for peripheral neuropathy in feet
Antinausea pill (AR)
Senna S (laxative max. daily dosage) offsets effects of pain killers
* as required
My Ologist Noah assures me no matter the condition I incur he has a pill, except, unfortunately, lymphedema. And so it goes. I teased Mom about all her meds, and now find myself considering a weekly pill dispenser. The med log is kept on a pad in the kitchen. A post it that says ‘log it’ is stuck on the cabinet over the counter where the meds stand ready. Vanessa loads salt in the softener and we continue to adapt and adjust.
Still the fundamental Hoosier values set I was raised to live within and abide by cannot help but make me think perhaps God would have me suffer so for past transgressions. Of course such a line of thought is really an emotional cop out while you pine over loved ones lost and that past life in the shrouded incandescence of your memory.
Vanessa is now adding to her considerable resume lymphadema therapist as she takes charge of my at home program. At present I am not moving well, but there is some hope that diligent MLD will get me back in two shoes, albeit they might be two different sizes. I would then be a legend, greater that Tommy Two Shoes, known as the salesman with a choice of best foot to put forward, the shapely high arch of one, or the ogre troll mass of flesh of the other. Great.
This past week the foot pain reduced me to tears a few times. I know the toll this takes on Van and try not to do it in her presence, but I was overwhelmed. Nothing worse than foot pain, be it a broken or jammed toe or the immediate inflammation of the thousands of nerve endings on the bottom of your foot. So we have added another drug.
Pre-Cancer
Vitamin
Generic Zocor(low good number maintenance dose)
At this stage of treatment
Generic Zocor
Oxycontyn 5*
Oxycontyn 10*
Lortab (every 4-6 hours)
Antibiotic (ends today after 10 days)
Nuerotin (generic equivalent) for peripheral neuropathy in feet
Antinausea pill (AR)
Senna S (laxative max. daily dosage) offsets effects of pain killers
* as required
My Ologist Noah assures me no matter the condition I incur he has a pill, except, unfortunately, lymphedema. And so it goes. I teased Mom about all her meds, and now find myself considering a weekly pill dispenser. The med log is kept on a pad in the kitchen. A post it that says ‘log it’ is stuck on the cabinet over the counter where the meds stand ready. Vanessa loads salt in the softener and we continue to adapt and adjust.
Neuropathy - Another Unintended Consequence
What is neuropathy and how to prevent it, I found this on the web.
Symptoms of neuropathy
• Neuropathy is the medical term for nerve damage, usually to the peripheral nerves in the hands, feet, arms, and legs. Chemotherapy drugs are toxic to healthy nerve cells, as well as to cancer cells. When those nerves begin to stop working, the result is tingling, numbness, weakness, and pain, even an impaired sense of touch.
• Loss of feeling in the hands and feet can make it hard to pick up small objects and cause clumsiness and difficulty walking. Some people with nerve damage first notice a "pins and needles" feeling, not unlike when an arm or leg falls asleep. This same nerve damage can also cause constipation and bladder problems.
• Common chemotherapy drugs such as cisplatinum (Platinol), carboplatin (Paraplatin), vincristine (Oncovin), and paclitaxel (Taxol) can strip the coatings from the nerves, particularly those in the hands, feet, arms, and legs. The higher or more frequent the dose of the chemotherapy drug, the greater chance it will cause neuropathy.
• Radiation treatment can also lead to neuropathy, and conditions such as diabetes, kidney problems, and malnutrition can cause nerve damage, too. In some people, the cancer itself may be the cause of neuropathy.
Preventing nerve damage from neuropathy
• Doctors can't do much to prevent neuropathy from developing, but one medication, amifostine (Ethyol), has been shown to protect nerves and tissues from damage when given to patients before chemotherapy begins.
• If possible, before beginning chemotherapy, talk to the doctor about which chemotherapy agent she plans to use and, if it's one that's likely to cause neuropathy, request amifostine as well.
• A few small recent studies have shown that the minerals calcium and magnesium, given intravenously as part of hydration during chemotherapy, can help prevent neuropathy. This is also worth discussing with the doctor ahead of time.
Hi Marietta,
I am using ice to relieve some of the pain in my feet, but now twenty seven hours in and persistent extremely painful. Couple of toes appear to be terribly bruised. Can't begin to tell you how much it hurts.
Help me obi one kenobi, only you can help.
Symptoms of neuropathy
• Neuropathy is the medical term for nerve damage, usually to the peripheral nerves in the hands, feet, arms, and legs. Chemotherapy drugs are toxic to healthy nerve cells, as well as to cancer cells. When those nerves begin to stop working, the result is tingling, numbness, weakness, and pain, even an impaired sense of touch.
• Loss of feeling in the hands and feet can make it hard to pick up small objects and cause clumsiness and difficulty walking. Some people with nerve damage first notice a "pins and needles" feeling, not unlike when an arm or leg falls asleep. This same nerve damage can also cause constipation and bladder problems.
• Common chemotherapy drugs such as cisplatinum (Platinol), carboplatin (Paraplatin), vincristine (Oncovin), and paclitaxel (Taxol) can strip the coatings from the nerves, particularly those in the hands, feet, arms, and legs. The higher or more frequent the dose of the chemotherapy drug, the greater chance it will cause neuropathy.
• Radiation treatment can also lead to neuropathy, and conditions such as diabetes, kidney problems, and malnutrition can cause nerve damage, too. In some people, the cancer itself may be the cause of neuropathy.
Preventing nerve damage from neuropathy
• Doctors can't do much to prevent neuropathy from developing, but one medication, amifostine (Ethyol), has been shown to protect nerves and tissues from damage when given to patients before chemotherapy begins.
• If possible, before beginning chemotherapy, talk to the doctor about which chemotherapy agent she plans to use and, if it's one that's likely to cause neuropathy, request amifostine as well.
• A few small recent studies have shown that the minerals calcium and magnesium, given intravenously as part of hydration during chemotherapy, can help prevent neuropathy. This is also worth discussing with the doctor ahead of time.
Hi Marietta,
I am using ice to relieve some of the pain in my feet, but now twenty seven hours in and persistent extremely painful. Couple of toes appear to be terribly bruised. Can't begin to tell you how much it hurts.
Help me obi one kenobi, only you can help.
Round 2 With The Beginning Of May
The first week of May marks round two of the chemo. While round one helped certainly, Dr. H seemed disappointed that it had not done more to impact the cancer. Round two is the same as round one chemically. The first treatment went as the one previous. I still have my hair, and the toughest part of it is the night of and day after. But on Tuesday this week business was good and Van chauffeured me about to make calls. Met a great fellow in Muncie who’s business was once tier one for the automotive. The business is a shell now, but he plods along, for it is what he knows. We visited for an hour with barely a mention of my obvious handicaps. For the first time Deanna, our angel of physical therapy, broke out machinery. To begin with she treated me with something similar to a brush plating device where I held the ground or cathode, and she held the anode, in the form of a pad. She used cornstarch for lubricant and worked over my left leg. This she called deep tissue therapy. Then I was placed in a variation of a G suit, with chambers that alternately inflate and deflate, producing an exquisite sensation and sense of fluid moving in my leg and middle. After therapy I made several trips to the single restroom on the first floor of the hospital over the course of an hour. Today I have bruised feet and cannot walk. Oops.
Two AM Friday. Now 26 hours of severe foot pain. Had no taste for Oreos tonight and ate a peach fruit cup This is definitely not the old me. The pain in the feet is accompanied by a black and blue toe on the left and one on the right to a lesser degree. The pain is a burning, your toenails wanting to blow off. Definitely not bruised feet as first thought. Marietta says Dr. H has a drug if it is not better today, nuerontin I think.
Two AM Friday. Now 26 hours of severe foot pain. Had no taste for Oreos tonight and ate a peach fruit cup This is definitely not the old me. The pain in the feet is accompanied by a black and blue toe on the left and one on the right to a lesser degree. The pain is a burning, your toenails wanting to blow off. Definitely not bruised feet as first thought. Marietta says Dr. H has a drug if it is not better today, nuerontin I think.
Spooked and Panicky - Run To The Emergency Room
May 1 2010
4 litres a day
Rex and I meet daily on Skype. We were visiting web sites on the thoracic duct and learned that 4 litres of fluid is moved by this system in the body I know only by name. Astoundingly, it does so without a pump, relying on muscle movement and gravity to get the job done. Clearly in my seating arrangements I will have to redefine elevated, having seen drawings I can finally understand. Clarian gives me pages of explanation, but for me health care is a new language. With each passing week I am learning more and give myself a strong B grade so far.
At present I am too tired to stand on pride when it comes to suffering. Consequently I went along with rushing to the hospital at the first sign of anything. Vance would say this was a huge waste of money and resources (Vance being the fellow who gets teeth filled with no pain killer, 'after all' he says, 'if they hit a nerve the stuff won't work anyway, so why use it?' No such cavalier crap for me at this point.
Suffering a rash and perceived shortness of breath Van drove me to the north hospital. I directed her to the wrong entrance, got out and pressed the talk box button on the wall. As someone answered a nurse who was passing by opened the door. ‘May I help you?’ She asked with a gentle expression, ‘I am patient Michael Courtney, birth date ………. I was instructed by the oncologist on call to report here for possible allergic reaction to antibiotic.’ was my reply. I stopped for the prerequisite pee function and as I came out the attractive nurse smiled holding an inviting wheel chair. To exam room one, an IV set, two nurses attending one manned the workstation and proceeded to find me in the system and the prerequisite questions. Blood was drawn and finally admitting came in. Vanessa of course now has a go kit that includes everything needed. ER got a complete update whish should help on second visits.
I got an x ray and vitals run and blood numbers run and hustled out the door with a scrip for super itch cream. Once again, the standard of care evidenced in another department of this institution. I wonder at how organizations of such size can function at such a high level. I remember as a kid nights in the Pizza King when only the high schoolers were there without adult supervision and under the pressure of heavy traffic we were a well oiled machine that could produce at record amounts, with a smile, keep up with the dining room, sell up to Customers and feel up at the end of the day. Only problem was as kids we could not do this consistently, night after night. After all, we had other interests.
Here from the late teens and early twenties to likely octogenarians and beyond work ‘in the zone’ every day. And that is a hell of a lot more demanding, just in numbers of clients than anything I and probably most people face in their careers.
My first extended hospital stay over and the bill came in at a little over 16 grand paid.
4 litres a day
Rex and I meet daily on Skype. We were visiting web sites on the thoracic duct and learned that 4 litres of fluid is moved by this system in the body I know only by name. Astoundingly, it does so without a pump, relying on muscle movement and gravity to get the job done. Clearly in my seating arrangements I will have to redefine elevated, having seen drawings I can finally understand. Clarian gives me pages of explanation, but for me health care is a new language. With each passing week I am learning more and give myself a strong B grade so far.
At present I am too tired to stand on pride when it comes to suffering. Consequently I went along with rushing to the hospital at the first sign of anything. Vance would say this was a huge waste of money and resources (Vance being the fellow who gets teeth filled with no pain killer, 'after all' he says, 'if they hit a nerve the stuff won't work anyway, so why use it?' No such cavalier crap for me at this point.
Suffering a rash and perceived shortness of breath Van drove me to the north hospital. I directed her to the wrong entrance, got out and pressed the talk box button on the wall. As someone answered a nurse who was passing by opened the door. ‘May I help you?’ She asked with a gentle expression, ‘I am patient Michael Courtney, birth date ………. I was instructed by the oncologist on call to report here for possible allergic reaction to antibiotic.’ was my reply. I stopped for the prerequisite pee function and as I came out the attractive nurse smiled holding an inviting wheel chair. To exam room one, an IV set, two nurses attending one manned the workstation and proceeded to find me in the system and the prerequisite questions. Blood was drawn and finally admitting came in. Vanessa of course now has a go kit that includes everything needed. ER got a complete update whish should help on second visits.
I got an x ray and vitals run and blood numbers run and hustled out the door with a scrip for super itch cream. Once again, the standard of care evidenced in another department of this institution. I wonder at how organizations of such size can function at such a high level. I remember as a kid nights in the Pizza King when only the high schoolers were there without adult supervision and under the pressure of heavy traffic we were a well oiled machine that could produce at record amounts, with a smile, keep up with the dining room, sell up to Customers and feel up at the end of the day. Only problem was as kids we could not do this consistently, night after night. After all, we had other interests.
Here from the late teens and early twenties to likely octogenarians and beyond work ‘in the zone’ every day. And that is a hell of a lot more demanding, just in numbers of clients than anything I and probably most people face in their careers.
My first extended hospital stay over and the bill came in at a little over 16 grand paid.
4.8.10
April 30, 2010 Home From The Hospital
Home at last from the hospital the totality of the disease is now known. At present the bladder cancer spread into lymph nodes or glands if you prefer. Swelling there has narrowed my thoracic duct causing the lymphedema. Of the hundreds of lymph nodes, why those? Of course I have learned to expect with each step in the process that I will have unintended consequences. Hero’s of my stay include all the nurses, less the one who was angry when she tried to set my IV and punched through. This was my first on arrival, and in part I’m to be held responsible for not drinking that quart of water to make the veins easier to find and penetrate. Floyd, the nurse who doesn’t look the part and runs a standing comedy routine gets the trophy for setting an IV with speed and no pain that endured. Tara, who in the face of disaster calmly brought the resources to bear. Erika who brought sunshine to the room and took such great care to assure my comfort served me every weekday. Frankly, I was so humbled by the standard and level of care given I felt obligated to do whatever I could to be a good patient and limit my need for nursing.
I converted my liquid intake to oz to cc to make it easier, and set up a system of posting on the white board. I never complained and took care not to get angry, even as a young urologist in training drew on me with my own ball point. Of the doctors I found only the urologists as rather chilled in their interactions with me. Beyond the ball point incident the failure of this group early on to react to my lymphedema and the sense that they really don’t have time for me has left me with a little trepidation every time I encounter them. At the end of the day urology is all about the surgery, and since I at present am inoperable I shouldn’t complain, so I won’t.
Megan
‘Would you like someone from physical therapy to come up?’ she asked. ‘Good idea’ I said in sing song fashion. I thought that was a great idea. True to her billing Megan showed up Friday morning prior to my release. Young and extremely driven in her career, she packs a kit of compression tricks and massage for lympedema. After looking me over and consulting with Vanessa she taped my left leg to the underwear line and my right to the knee. ‘Leave them on as long as possible, through the weekend if you can’ she instructed. As a parting gift she gave to me a knit tube of white material. Smiling up and me she opened it with her fingers and demonstrated that it would stretch to accommodate even my grapefruit of testicular fluidic mass. ‘ Make a sling and hang this over your shaft’ she instructed. That alone has made it possible for me have 100% improved mobility.
Coming home after 7 days in the hospital left me with a little jet lag. Friday was a rough day, with discomfort, feeling sorry for myself and general lack of enthusiasm to go forward. Fortunately Vanessa has the patience for it and we weathered the period.
Now at 5 A on Saturday I am again glad to be here, even with all the discomfort. I slipped in and gave her a hug and little cuddle gaining a comfort and strength that she gives to me as long as I am open to receive it.
I converted my liquid intake to oz to cc to make it easier, and set up a system of posting on the white board. I never complained and took care not to get angry, even as a young urologist in training drew on me with my own ball point. Of the doctors I found only the urologists as rather chilled in their interactions with me. Beyond the ball point incident the failure of this group early on to react to my lymphedema and the sense that they really don’t have time for me has left me with a little trepidation every time I encounter them. At the end of the day urology is all about the surgery, and since I at present am inoperable I shouldn’t complain, so I won’t.
Megan
‘Would you like someone from physical therapy to come up?’ she asked. ‘Good idea’ I said in sing song fashion. I thought that was a great idea. True to her billing Megan showed up Friday morning prior to my release. Young and extremely driven in her career, she packs a kit of compression tricks and massage for lympedema. After looking me over and consulting with Vanessa she taped my left leg to the underwear line and my right to the knee. ‘Leave them on as long as possible, through the weekend if you can’ she instructed. As a parting gift she gave to me a knit tube of white material. Smiling up and me she opened it with her fingers and demonstrated that it would stretch to accommodate even my grapefruit of testicular fluidic mass. ‘ Make a sling and hang this over your shaft’ she instructed. That alone has made it possible for me have 100% improved mobility.
Coming home after 7 days in the hospital left me with a little jet lag. Friday was a rough day, with discomfort, feeling sorry for myself and general lack of enthusiasm to go forward. Fortunately Vanessa has the patience for it and we weathered the period.
Now at 5 A on Saturday I am again glad to be here, even with all the discomfort. I slipped in and gave her a hug and little cuddle gaining a comfort and strength that she gives to me as long as I am open to receive it.
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