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.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
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.
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.
3.8.10
Give the Nurses Strength To Endure
Sunday and I just finished my MLD session (manual lymph drainage). No doubt I am experiencing some changes. I can lie on my back a little longer now. My stones feel like someone has kicked the yahoo out of them. That unique ache/throb only a man can appreciate. They look like a flesh balloon swollen together as they are. Nevertheless, we must take this as just another week and an expected new issue that will be unpleasant. Even when Mom was in hospice and we spent a few nights with her I did not grasp the scope of her disease. I just never thought of cancer in holistic terms, as a disease that controls both directly and indirectly every behavior I have. The cold nights have returned. Bought new toilet seats today and wondered as I did how many toilet seats are sold to cancer victims, and for long term sufferers how many are involved. A sure sign of sickness in the house is wearing out the toilet seats.
BAM, like an electric shock Nurse Van touched a place on my leg with her nail. BAM, she did it again.
In the darkness of morning the lights in the bedroom seem harsh and the air cold. Van was making buckets and digging trenches to kick start the lymphatic system and get some draining going. This was her 3rd time. BAM ‘Please no more’, I cried out. Although there was nothing but a nail, the nail was enough. ‘You missed some spots” she said, noting after I lifted my shirt that some marker from the previous day’s therapy was still on my body. ‘I don’t care’ was my response, but I knew from her look that was unacceptable. ‘But if you are self conscious about it we can wash it off ‘, I said. She smiled and said ‘I will get a cloth ready.’ ‘AHHHHHHHEEE, holy sh.., oh my’, proves that we can have differing concepts of what warm is in a wet cloth on skin.
We laughed and I cried. Nursing is a gift, but there is certainly a learning curve. So off we go for my second chemo infusion. The nurses commented on my apparent improvement from last time. Sitting there I assessed my situation. On one side sat a man born in 1934 with his loving wife faithfully attending him. She struggled with the ice dispenser, with much more on the floor than in her cup. ‘Nearly blind’, she confessed, and I hoped she wasn’t the designated driver. On the other a tall slender woman, wearing an expensive wig and dressed in high fashion slacks, sweater and heels. She came alone, knew all the nurses on a first name basis and had a port. When another nurse came in to visit she stood and broke a tear. Up the way a youngster, devoid of color and hair but talking up a storm with her company. And my dear Vanessa, focused on me, caring for me. What a blessing she is. Chemo knocked me down this afternoon. A strange feeling of malaise, an emptiness, a pain but not a pain.
BAM, like an electric shock Nurse Van touched a place on my leg with her nail. BAM, she did it again.
In the darkness of morning the lights in the bedroom seem harsh and the air cold. Van was making buckets and digging trenches to kick start the lymphatic system and get some draining going. This was her 3rd time. BAM ‘Please no more’, I cried out. Although there was nothing but a nail, the nail was enough. ‘You missed some spots” she said, noting after I lifted my shirt that some marker from the previous day’s therapy was still on my body. ‘I don’t care’ was my response, but I knew from her look that was unacceptable. ‘But if you are self conscious about it we can wash it off ‘, I said. She smiled and said ‘I will get a cloth ready.’ ‘AHHHHHHHEEE, holy sh.., oh my’, proves that we can have differing concepts of what warm is in a wet cloth on skin.
We laughed and I cried. Nursing is a gift, but there is certainly a learning curve. So off we go for my second chemo infusion. The nurses commented on my apparent improvement from last time. Sitting there I assessed my situation. On one side sat a man born in 1934 with his loving wife faithfully attending him. She struggled with the ice dispenser, with much more on the floor than in her cup. ‘Nearly blind’, she confessed, and I hoped she wasn’t the designated driver. On the other a tall slender woman, wearing an expensive wig and dressed in high fashion slacks, sweater and heels. She came alone, knew all the nurses on a first name basis and had a port. When another nurse came in to visit she stood and broke a tear. Up the way a youngster, devoid of color and hair but talking up a storm with her company. And my dear Vanessa, focused on me, caring for me. What a blessing she is. Chemo knocked me down this afternoon. A strange feeling of malaise, an emptiness, a pain but not a pain.
2.8.10
Obstruction, Poop Dust, Mussolini and the Nuclear Option
Day After Chemo April 14
What amazes me is the amount of logic that fills your streaming responses to life’s givings.
Rex
Hi Rex,
No fear Brother-am ok this AM. My regimen today is:
Hang upside down in some configuration from 5-15 minutes at regular intervals to build strength and ability and promote draining.
Allow 45 minutes every 4 hours for drug interaction with pain meds.
Drink 2 quarts of water.
Pee.
Work at my desk as I can-time limited due to ergonomic incompatibility of furnishings with two sacks full of fluid and a flooded shaft.
Buy a large jock strap.
We are starting chemo with a less an aggressive regimen that originally specified and will monitor kidney function, becoming more aggressive over time until the disease is dead.
Remember, trenches and buckets drain the shaft and empty the bags. See you soon.
Your dedicated and unworthy sibling,
M
As the week progressed my frustration and suffering reached a pinnacle. Just as in each of the past few weeks, the disease presents new frustrations each week. So it was the night of the fourteenth. Abdominal pain increased by the hour. I too conservatively administered laxative and was up through the night. Around 2 am I stationed myself in the bathroom. I attempted to shit in the tub and sink; I stood over the stool, set backwards on the stool, sideways. I made a pad out of towel and masking tape. I attempted a gymnast’s move, balancing on my hands. I tried spreading. By the early am I was delirious. Using the Childs ear syringe buried in the back of the cabinet for these past decades became a shallow deliverer of tap water enemas and a gentle probe until Vanessa caught me with it.
In the still of the early morning, excruciating pain that went through all of the drugs at reasonable dose like they were nothing, I again found myself struggling with the Nissan factor. The pallets were backing up again, must be that Mussolini thing in the back of my head that has made me timid on this matter. I remember reading of Mussolini enjoying watch men die from drinking too much laxative, pumped down them by the dictator’s goons, and the victims subsequently shatting themselves to death in horrible fashion. I thought all those years Mom was addicted to exlax and what a strange addition that had to be. I couldn’t figure it out. Perhaps she was like me, obligated to take them daily. Now it was clear, I had a bowel obstruction and so it was I turned to the nuclear option. While my previous experience with this chemical magnesium citrate had been a mild encounter now it would earn its name.
While waiting for its effects to become evident, pacing my 6x3 foot cell I tried to understand how this could happen. I concluded that the narcotics for pain react with waste product and deliver a very dry product. Often I have made it to the loo only to cut forth with a gaseous blast of poop dust. Prior to cancer poop dust was not in my vernacular. With the narcotics often deadening the longest passings, I was truly surprised the first time I saw the dark chocolate covered chips and specs about the bowl. After 58 years of nothing strange on that end here was another anomaly. ‘So’ I thought, ‘I really am getting old.’
The nuclear option must be taken with copious amounts of water. I thought 48 ounces were enough, and for me it was woefully short. I passed the blockage about 24 hours after first signs. It was painful. Within two hours a couple of follow up events gave me new respect for the concoction. This would be the last time I would chance a BO. No more gambling or delaying the Nuclear Option (NO). No action in 24-the NO, not enough action, the NO. In retrospect, I wonder if I had simply prevented the constipation pain to begin with I might have had a lot more rest these past 160 odd days.
Saturday and I look back at the worst week yet, typically so at my own hand. However we now are amending routines. The suffering led me to a better understanding of the signs my body puts up, warnings to guide me. Going into the new week I will have a strong, regular laxative regimen to keep things moving. This alone alleviates a lot of pain that is so severe and generalized it is difficult to describe or isolate.
What amazes me is the amount of logic that fills your streaming responses to life’s givings.
Rex
Hi Rex,
No fear Brother-am ok this AM. My regimen today is:
Hang upside down in some configuration from 5-15 minutes at regular intervals to build strength and ability and promote draining.
Allow 45 minutes every 4 hours for drug interaction with pain meds.
Drink 2 quarts of water.
Pee.
Work at my desk as I can-time limited due to ergonomic incompatibility of furnishings with two sacks full of fluid and a flooded shaft.
Buy a large jock strap.
We are starting chemo with a less an aggressive regimen that originally specified and will monitor kidney function, becoming more aggressive over time until the disease is dead.
Remember, trenches and buckets drain the shaft and empty the bags. See you soon.
Your dedicated and unworthy sibling,
M
As the week progressed my frustration and suffering reached a pinnacle. Just as in each of the past few weeks, the disease presents new frustrations each week. So it was the night of the fourteenth. Abdominal pain increased by the hour. I too conservatively administered laxative and was up through the night. Around 2 am I stationed myself in the bathroom. I attempted to shit in the tub and sink; I stood over the stool, set backwards on the stool, sideways. I made a pad out of towel and masking tape. I attempted a gymnast’s move, balancing on my hands. I tried spreading. By the early am I was delirious. Using the Childs ear syringe buried in the back of the cabinet for these past decades became a shallow deliverer of tap water enemas and a gentle probe until Vanessa caught me with it.
In the still of the early morning, excruciating pain that went through all of the drugs at reasonable dose like they were nothing, I again found myself struggling with the Nissan factor. The pallets were backing up again, must be that Mussolini thing in the back of my head that has made me timid on this matter. I remember reading of Mussolini enjoying watch men die from drinking too much laxative, pumped down them by the dictator’s goons, and the victims subsequently shatting themselves to death in horrible fashion. I thought all those years Mom was addicted to exlax and what a strange addition that had to be. I couldn’t figure it out. Perhaps she was like me, obligated to take them daily. Now it was clear, I had a bowel obstruction and so it was I turned to the nuclear option. While my previous experience with this chemical magnesium citrate had been a mild encounter now it would earn its name.
While waiting for its effects to become evident, pacing my 6x3 foot cell I tried to understand how this could happen. I concluded that the narcotics for pain react with waste product and deliver a very dry product. Often I have made it to the loo only to cut forth with a gaseous blast of poop dust. Prior to cancer poop dust was not in my vernacular. With the narcotics often deadening the longest passings, I was truly surprised the first time I saw the dark chocolate covered chips and specs about the bowl. After 58 years of nothing strange on that end here was another anomaly. ‘So’ I thought, ‘I really am getting old.’
The nuclear option must be taken with copious amounts of water. I thought 48 ounces were enough, and for me it was woefully short. I passed the blockage about 24 hours after first signs. It was painful. Within two hours a couple of follow up events gave me new respect for the concoction. This would be the last time I would chance a BO. No more gambling or delaying the Nuclear Option (NO). No action in 24-the NO, not enough action, the NO. In retrospect, I wonder if I had simply prevented the constipation pain to begin with I might have had a lot more rest these past 160 odd days.
Saturday and I look back at the worst week yet, typically so at my own hand. However we now are amending routines. The suffering led me to a better understanding of the signs my body puts up, warnings to guide me. Going into the new week I will have a strong, regular laxative regimen to keep things moving. This alone alleviates a lot of pain that is so severe and generalized it is difficult to describe or isolate.
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