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.
Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts
14.8.10
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.
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.
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.
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
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.
Needle Art
Simon Cancer Center Indianapolis Day 4
The mornings are filled with doctors and family in the afternoon. I am increasing my work load. Now on an IV for a minimum of 4 hours each day to deal with the complications and concerns I can’t imagine how those who are connected 24/7 can cope. The rolling stand and tubing infusing various chemicals represent the miracle of today’s medicine. While devices evolve to new configurations almost daily, our bodies remain the same, generation after generation. Perhaps if they cannot cure cancer, they can add to the uncontrolled cell growth a way to connect to life saving medications forever painless and even fashionably attractive.
The Art of the Stick
Apparently medical schools treat inserting needles with a variety of options. Here at Simon the methods run the gambit. Some draw through the available IV everyone has. This is a restricted method, not allowed on other parts of the hospital. No new holes and fast delivery are certainly advantages. I learned to drink water and other liquids continuously. At 59 I dehydrate very quickly. Without a lot of water in you veins are hard to find. Having never been in a Hospital for more than relatively few hours, during my extended stay I found the removal of blood from veins is as much art as science. Just as I now know never let an angry woman set an IV, I know that there is no apparent established routine for the actual penetration. The build up is always the same. Doododededahdah, the key noise rattles out of the board and the cabinet opens. Packets are gathered. The bar code reader comes out of it’s holder, numbers are punched in. This phase appears to require a lot of concentration. Clearly the profession has been brow beat to death about making errors. OK by me. A small plastic pan or just the hands and pockets are used to convey the needed materials to me, in bed, and placed on my stomach, leg or adjacent to. A survey of vein locations is done. Some look for the crease between fore and upper arm, classic junkie entry point. My left arm crease looks like a small spot of measles. Some like the back of the hand or forearm, chief among them a Caribbean nurse who raised the state of the art Hill Rom air bed to tit level, applied a liberal swath of alcohol that immediately chilled the site, did a patterned rub and likely cited a silent chant and stuck me without my feeling. I always thought they filled syringes, but in the modern era they set a fine needle on a fixture that is butterfly bandaged to you and accommodates mounting an empty cylinder that fills under my blood pressure. Done well there is nothing, done not so well and it amounts to a bee sting. Some took blood from my IV port, as the cancer center was one of the few places you could. While that is no stick, I sensed messing with the IV had some risk that most nurses preferred not to incur.
The mornings are filled with doctors and family in the afternoon. I am increasing my work load. Now on an IV for a minimum of 4 hours each day to deal with the complications and concerns I can’t imagine how those who are connected 24/7 can cope. The rolling stand and tubing infusing various chemicals represent the miracle of today’s medicine. While devices evolve to new configurations almost daily, our bodies remain the same, generation after generation. Perhaps if they cannot cure cancer, they can add to the uncontrolled cell growth a way to connect to life saving medications forever painless and even fashionably attractive.
The Art of the Stick
Apparently medical schools treat inserting needles with a variety of options. Here at Simon the methods run the gambit. Some draw through the available IV everyone has. This is a restricted method, not allowed on other parts of the hospital. No new holes and fast delivery are certainly advantages. I learned to drink water and other liquids continuously. At 59 I dehydrate very quickly. Without a lot of water in you veins are hard to find. Having never been in a Hospital for more than relatively few hours, during my extended stay I found the removal of blood from veins is as much art as science. Just as I now know never let an angry woman set an IV, I know that there is no apparent established routine for the actual penetration. The build up is always the same. Doododededahdah, the key noise rattles out of the board and the cabinet opens. Packets are gathered. The bar code reader comes out of it’s holder, numbers are punched in. This phase appears to require a lot of concentration. Clearly the profession has been brow beat to death about making errors. OK by me. A small plastic pan or just the hands and pockets are used to convey the needed materials to me, in bed, and placed on my stomach, leg or adjacent to. A survey of vein locations is done. Some look for the crease between fore and upper arm, classic junkie entry point. My left arm crease looks like a small spot of measles. Some like the back of the hand or forearm, chief among them a Caribbean nurse who raised the state of the art Hill Rom air bed to tit level, applied a liberal swath of alcohol that immediately chilled the site, did a patterned rub and likely cited a silent chant and stuck me without my feeling. I always thought they filled syringes, but in the modern era they set a fine needle on a fixture that is butterfly bandaged to you and accommodates mounting an empty cylinder that fills under my blood pressure. Done well there is nothing, done not so well and it amounts to a bee sting. Some took blood from my IV port, as the cancer center was one of the few places you could. While that is no stick, I sensed messing with the IV had some risk that most nurses preferred not to incur.
3.8.10
The Cancer Center - Won't You Be Our Guest?
Lymphedema will be with me for the rest of my life, a chronic condition that I must now learn to manage. On April 20 it is now the primary source of my discomfort. The lymph system is another miraculous component of the human physique. Comprised of hundreds of nodes, it moves the lymph (fluid) through your body. It is a highway system that moves lymphecites and white blood cells throughout your body, guaranteeing all parts get your immunity. On April 23 it lands me in the cancer center.
Simon Cancer Center-IU-Indianapolis
‘Part of it’ became a chronic problem when a hot rash developed on my legs. Dreaded cellulitis was the diagnosis. Consistent with my short history of cancer, which seems to guarantee that I will experience every complication no matter how remote the odds, I found I was not surprised. So I was admitted into the cancer center for treatment on the spot from a visit with Dr. Noah.
The land of tranquility, bamboo trees, sculpture, meditation and caring, the Center represents the cutting edge in cancer treatment. It is more than a tumor, runaway cells and physical symptoms. The Center is designed to help the soul as well as the body. My room rivals a fine hotel room with it’s ceramic tile bath and fine cabinets. The room is furnished in traditional style with a Hill-Rom bed that every feature worked on, a fake leather sofa that could serve as a single bed and a strange recliner to kick back in.
Nurses are amazing here. A special breed of caring is evident. I have been here now for the third night, getting an evening injection via IV of an atomic antibiotic. Of course, consistent with the course of this disease the terrible unforeseen event this time was a leak in the IV, resulting in invasion of tissue surrounding the point of entry. For a little while there was urgency and a little panic. The solution to the lymphedema will not be here, but hopefully I will be well enough to return to manual draining next week. My office is now the hospital room, and I am prepared to work from here next week, but I certainly hope I get to go home tomorrow. Skype allows me to see and visit with my Brothers, a great comfort. Still my being here reinforces the reality of my dire situation. And yet I could have a 1.5 hour visit with Paul in Oregon without interruption. Again, a blessing in every dark cloud is a gift from God.
Simon Cancer Center-IU-Indianapolis
‘Part of it’ became a chronic problem when a hot rash developed on my legs. Dreaded cellulitis was the diagnosis. Consistent with my short history of cancer, which seems to guarantee that I will experience every complication no matter how remote the odds, I found I was not surprised. So I was admitted into the cancer center for treatment on the spot from a visit with Dr. Noah.
The land of tranquility, bamboo trees, sculpture, meditation and caring, the Center represents the cutting edge in cancer treatment. It is more than a tumor, runaway cells and physical symptoms. The Center is designed to help the soul as well as the body. My room rivals a fine hotel room with it’s ceramic tile bath and fine cabinets. The room is furnished in traditional style with a Hill-Rom bed that every feature worked on, a fake leather sofa that could serve as a single bed and a strange recliner to kick back in.
Nurses are amazing here. A special breed of caring is evident. I have been here now for the third night, getting an evening injection via IV of an atomic antibiotic. Of course, consistent with the course of this disease the terrible unforeseen event this time was a leak in the IV, resulting in invasion of tissue surrounding the point of entry. For a little while there was urgency and a little panic. The solution to the lymphedema will not be here, but hopefully I will be well enough to return to manual draining next week. My office is now the hospital room, and I am prepared to work from here next week, but I certainly hope I get to go home tomorrow. Skype allows me to see and visit with my Brothers, a great comfort. Still my being here reinforces the reality of my dire situation. And yet I could have a 1.5 hour visit with Paul in Oregon without interruption. Again, a blessing in every dark cloud is a gift from God.
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.
April 5, 2010 Lymphedema - An Unintended Consequence
April 5- A new week and I find myself completely crippled. Lymphedema is the cause of swelling to my left leg. Although not very painful, I am now aware of the limb. We take for granted our extremities. When a shoulder injury resulted in a torn rotator cuff a few years back I discovered how heavy my arm was. I never considered the weight of my arm before then, or the genius of the Creator in designing a frame and muscle structure that could support it through all of its normal motion. The experience gave me a healthy respect what I was swinging around from my shoulders. As I deteriorate things get a little worse each week, and this week is no exception. I now find my movement, even limited is severely restricted. April of 2009 and my 'overdoing it' level was roughly equivalent to what is was 30 years prior. April of 2010 and that level is achieved with a short walk through the house.
Had an echogram of the heart done at three pm and it must be Tuesday. Short procedure with photo’s for baseline and to check for any sign of heart disease. Butler lost by a hair and college basketball is now dormant at last. The intensity of those battles, many down to the last few seconds just as the last one was have been a great source of inspiration and entertainment these past weeks.
Had an echogram of the heart done at three pm and it must be Tuesday. Short procedure with photo’s for baseline and to check for any sign of heart disease. Butler lost by a hair and college basketball is now dormant at last. The intensity of those battles, many down to the last few seconds just as the last one was have been a great source of inspiration and entertainment these past weeks.
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