Feeling Lymphy And The New Generation Killer

The tightness of the skin indicates a lot of lymph not moving as it should, and the left side remains about half again larger than the right so my lymph nodes have not settled down.  The animal is a rotten evil thing that wants nothing but destruction.  Considering everything we have certainly done well learning to live with the disability that is lymphedema. Yes I have a massage table and a lovely Swedish masseuse named Inger that looks much like my Wife, yes my daily routine is much different from even this time last year, but it can be lived with. 

As if over sized magazines on semi automatic weapons were not enough, what about phones?  Yesterday a beautiful young woman lost her life when she drove her car across the center line and hit a dump truck head on.  It appears she was ‘texting’ when it happened.  I wonder how many more died or were crippled yesterday for the same reason, and if she looked up at the last moment or was so engrossed she never knew what hit her.  I wonder if the dump truck sounded it’s horn.  It used to be you died from being drunk, going too fast or getting run over on the highways.  Now using your phone can kill you.  Of course cell phones from the start were known killers.  I got my first one in 1984 with Cellular One.  It was permanently mounted in a vehicle.  I still have my first truly portable, a satchel phone.  Don’t ask me why.  Then I got my first hand held.  At that time I had clients in the far reaches of Michigan, Iowa, Illinois and Wisconsin and Indiana.  I rigged a shoulder holder for my phone, a rather bulky affair, and during long conversations on the road I could drive with my knee, talk on the phone through my left ear and heat my coffee through the right side, such was the intensity of the microwave transmissions near towers.  Those were the days.  I knew it probably was not good for me, but I never thought a phone could take a person’s life.  When robins tease a cat they play a life and death game.  I wonder if they do not realize it, just as the young woman did not realize her phone could kill her.  I think the robins know the risk but do it anyway, like rambunctious teenagers and the famous last words ‘hey guys, watch this’ that have been followed by many a crippling or fatal event. 

After a week of tossing the house once again today we took a car load to Goodwill.  I definitely have a different perspective on what I value to keep, so some of my toys went.  Some things, like my bear from the big blue house I just could not bear to part with, so to speak, so Vanessa allowed me to keep a few meaningful items.  It just amazes me that every time we go through this we still find stuff to give away, even though the last time it seemed like we had found everything.  This time stuff such as the binoculars I never use, the digital thermometer I used to use, a TV converter box we do not need since we upgraded the TV’s, some old video stuff since replaced by better technology all went. 

I am moving about OK, with some pain and stiffness through my mid section.  Now sleeping in 2 plus hour increments my nighttime routine still requires some food, usually a piece of toast with butter and jelly, around 2 AM.  I am also taking an oxy around that time.  For the last few days I have been able to return to bed around 4AM and sleep through to 7 or 8, delicious for sure. 

My left leg demonstrates chronic lymphedema, but it looks good in hose.  Inger reports we are in better shape today but insists I stay in the compression garment on that side.  Worse is the groin and midsection, where I am battling an accumulation of lymph that I fear might be somewhat dangerous if I do not get it under control soon.  My how life has changed, that lymph is so important to me now and this time last year I had no idea what it was.  Today Sunday is a good day.  We went to Indy, where Van shopped with the Daughter and I got to hang out with the Son.  Life is good.    

The Inger, The Lymph, The Twenty Third

 Inger visits every day now.  She is going to end up owning us before this is all over.  I do not think our insurance comes near covering her bill.  She has taken on the roll of trainer coach.  Lymphedema is a dynamic condition and we are still learning of tricks it can pull and the finer nuances of edema management.  I have resigned my self to having a left leg larger than a right.  While I can walk ok I have a cane to use, which slows people down who can now outpace me.  Inger works certain pump points to jump start my lymphatic system in the morning.  She keeps track of my condition, trends and addresses those issues that need addressed.  The condition can get chronic and turn to major keg leg and balloon foot in hours if you are not paying attention and sometimes even if you are. 

There seems to be only passing mention of this side effect as a possibility in the research.  My bladder cancer spread into nearby lymph nodes first and swelling started shortly after the first chemo treatment.  Nodes swollen with the animal have pinched off my thoracic duct thereby reducing flow and resulting in the swelling.  I live by the belief that if it has happened to me thousands have already experienced it and there should be reference material out there but there is not that I can find.  Inger’s hard work and myself keeping active and wearing the compression stocking regularly allow me to move about and wear regular shoes. 

Throughout the day today the constant pain and discomfort in my mid section was managed by the med.  I ramped up to 7 pills per 24, which have effectively stopped my howling every time I drain.    At this level I will either develop a tolerance (likely) or require a driver (schedule conflicts).  Jennifer arrived at midnight with Savanna the city cat in tow.  We watched Jimmy Fallon and laughed.  I am thankful for Jennifer but I know it is a real chore for her to get down here.  Others might say she shouldn’t look at it that way but I understand.  If you are working 6 or 7 days and nights a week always slave to the conference call, always with laptop and smart technology in tow, any chance to escape it is cherished.  I find it tragic that we put men on the moon and weapons that can end the world under the sea but we cannot go from Chicago to Indianapolis in less than 4 hours.  It is a function of our willingness to settle for hundred year old piston engine technology to get around. 

The girls turned in around 2A.  Not much sleep to go on for Christmas Eve.  I am still having sore tummy issues.  I doubt the pizza tonight helped but I could not resist.

Notes From The War On Cancer Front

Tommy Tumor and his cell mates Enda Edema and Lenny Lymph have been in communication with Sir Can in continued efforts to defeat me. Seeing my strength, size and air superiority, well organized chemical attack and so forth, these creative enemies are probing and looking for ways to entrench themselves over ever greater geography by exploiting my weaknesses and carefully trying to break my spirit.
Oh, sorry, I digress. Was I talking about Taliban, Suni’s and Afghan’s or cancer?
In any event, my enemies are creative and the cancer like any other form of life has as strong a will to live as I, but not stronger, and I have science on my side. ‘Science will save us’.
After a level 9 elliptical workout Friday and all the painting yesterday this morning, Sunday the 29th my left leg with the hose is almost the same size as the right. It’s too cool. This afternoon on the south side of Muncie some idiot was driving up and down flying a rebel flag in the back of a 90’s vintage pick up truck. Apparently this dumbass supports a plantation economy, slavery and a division of America. This is at minimum seditious behavior in my humble opinion, but the air waves are full of those proposing anarchy these days.
Something chemical is still going on. I seem to be going bald on top while the hair on my legs is getting attractive and thin. Frankly, it appears I am going bald on top and growing head hair on my legs. Perhaps this is another miracle of modern science. Do the Doctors know head hair can be grown on legs? Can it be harvested and transplanted? Is it renewable? Will it grow until I have to see a hair dresser? So many questions. For the first time in my life I have a condition that causes a serious physical reaction when I over do it. I am not saying that before I did not have physical reactions. You over do it and you’re sore, you over do it and you’re tired, you over do it and you’re over heated. You over do it and you get frost bit. I suffer a slightly different result from over doing it now, a physical reaction with the lymphedema. My left leg can become hard as a rock and swell up in a heart beat. For a period until a couple of weeks ago I lived a cycle of overdoing it until the leg gets bigger and feels tired and funny. Rest it, use a stick and get it back down. Inger says ‘it looks good’ and slaps the calf. I go about overdoing it until the leg swells back up. ‘Oh this is angry, you’ve over done it. Rest it up, don’t do so much’ Inger says and I get the stick and keep it elevated and so the summer cycle of June and July went.
I have found a couple of routines with certain machines at the gym that really seem to help keep thing under control. I started very tentatively. My routine includes 20 minutes min on the elliptical or ski machine, leg presses, the scrunches where I do my kagles while doing ab exercises on the ab table. Man, who was to know cancer would be so much work, and it is not even the cancer, but the unintended consequences that are causing me so much toil and sweat. As I write of going to the gym I have not forgotten the dark days of late winter and spring, when I though I would never return to the gym. One thing for sure, life is a good as it get’s, but it can be miserable if you don’t get to do some getting’.

Summer Projects As War Is Raged

August 26
Where have the days gone? I am working my tail off for few orders, a common complaint these days. I am enjoying the quoting, researching, problem solving stuff that is getting thrown at me. I even have a shop project going on a data logger. Me, no sparky for sure with burnt screwdriver tips and multimeter probes now a master of the 4-20 amp loop circuit and all the components contained therein. The recorder is awesome and something no competitor offers in a little box, but there is that thing of making it work. Modern technology has made it safer than it was for me the last time I tackled a similar project involving electricity. I think I was 12 and then it was a shortwave radio. Failure then meant blowing a fuse up at the house, the kind you screw in carefully, made of glass with a light bulb like base. Dad shown darkly when I blew fuses and was capable of blowing one of his own. Today my excursions in power are protected by a GFCI. With a flash and a pop I am not electrocuted, the equipment is not damaged and the building does not burn down. Then one has only to step over and push the reset. No one is the wiser. Wonders of modern science, not that any such thing ever happened to me.
My daily routine begins with Inger, our Family scripture time and our MLD session. Then it is on with the rubbers and off with the day. Last night I showed my stockings to a young man with a broken back, likely from sports, who must wear a special device for several weeks. I am not sure it made him feel better. I just wanted him to know wearing stuff is something lots of folks go through. I failed to mention while he can retire his in a few months I will wear mine for the remainder of my life as the prognosis now stands. We shall see. War on lymph is the name of the game. These lazy ass lymphers just do not want to go back up hill once they get down to my left leg. Must be like the Taj Mahal for lymphers is all I can figure. Anyway you gots to keep em’ movin’ no matter, cause if you don’t stuff gets hard, bigger and pretty soon you might be back in engineered sandals and taking pain pills. I still remember as I laid there and looked down on the examination table concerned about my grapefruit size jewels of the Nile I realized my left leg was swelling before my eyes, even as we spoke. ‘Part of it.’, the doctor said. For a few moments I accepted it, but my Women did not accept it.
So war it is. Take no prisoners, wake up them lymph nodes first thing, start the calves pumping. Four to six days a week I am at the gym, usually before 6 AM with a crowd for the most part my senior I think. The oldest I know is in her mid 80’s doing the elliptical at level 80 for 30 minutes keeping pace and barely breaking a sweat. If that is not an inspiration what possibly could be?

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.

Compression Stockings

Manikin legs, what else can you say. Compression stockings will be part of my life going forward. These cynical devices, made in Germany I understand are like rubber band hosiery. One has to wonder what diabolical or horrible thing this fabric was developed for in the first place. Now 4 days after getting them I was able to put them on without help or incident this morning. Turn them inside out except the foot end, locate the heel, stretch, push in with silk footsie on to make it easier then roll on stocking. Mine are particularly compressing. Manikin legs, it is a handicap. This is part of my new reality, my revised normalcy.
I talked it over a little with Jennifer last night. She seemed to accept it as well. It cannot be a matter of worse or better, it has to be that it is just different, yet as close as we can make it to the old normalcy.

Mid June 2010 Returning To Normalcy

Friday has come again. Worked more this week, did pretty good, judging by the mess on my desk. Today was another step back to normalcy according to Van, as we went to the air show media day just as we have in the past. Restoring lost traditions is important to the Wife. The annual routine includes certain things that we just do, and we missed several months here of doing things we just do. So she felt good today about our outing. For me it was nothing like it was before. My snausage left leg is a true pain in the arse among other places. As I hobbled in and she waited patiently at the gate I felt remorse at the fact that normalcy now included me being handicapped. It is a bitter pill.
Saturday and normalcy again was the theme of the day as I participated in recycling, breakfast, a movie date in the afternoon and a dinner out. Reality returned upon arriving home to have my legs re-wrapped for the night to hold down the swelling. I continue to find reasons why it would be most merciful for me to meet an early end and let my Family get on with their lives. From the stress on my Daughters to the physical pain my Vanessa endures in my treatment regimen, the reasons accumulate for me to find that elusive cliff to drive off of. Yet there are no cliffs in Indiana, so we soldier on for another day.
June 15 Tuesday and the monsoonal rains continue each evening. Despite the heat and gloom I find myself in good spirits this morning after chemo. Dinner with the H family last night was fun and I did not have to be wrapped, and great break. Sunday I went to Van’s Church for the Bible School Program. While there during prayers and praises Gracey shouted out she was glad to have Mike back among us. I replied it was thrilling to once again be able to wear two shoes. This celebration carried on at Dr. H’s Monday session. He noted I was wearing my Bob Marley shoes. The infusion nurse danced with me to celebrate. After chemo I got my compression stockings, and we are talking compression. I will have to wear them for a while to judge if we have the right ones and if they do the job. There are varying degrees of compression, and universal understanding that no matter what they are not worn for comfort.
Normalcy, I thought a lot about this after Vanessa mentioned it. Over the week end we took in a matinee, dined in a nice restaurant, went to Church together, slept in the same bed for most of one night, worked in the garden together briefly, went to the June Jamboree, a local festival and had our annual K Burger, an inviting gastronomic gamble each year and had our weekly Sahm’s night, a local watering hole with a Friday well drink special. On the whole a very active and normal weekend for us in June and one Vanessa I think took great strength from. So normalcy has a place of importance that supersedes my being handicapped. My Skype calls with Rex have evolved into something like drop in visits, with easy conversation and so many unspoken understandings and courtesies. You would think we were Brothers. So it is probably a good thing I do not have a convenient cliff for my Family and Friends which makes it a good thing for me.

Back To The Gym And Things Are So Swell

Wednesday and the gym was great. I probably lasted 25 minutes. Same old crew, two couples, one guy named Phil, one guy that always frowns with a wife with a landru like smile and a vigorous routine. I am not sure but I think Phil is looking a little slimmer. I minded my own with leg presses, ab work, dumbbells and a universal machine. I was too tired for light treadmill, going to have to build back up to it.
The warm weather and seeing people really drives my handicap home. With each passing day it becomes more difficult for me to contain my anger and frustration over my plight. I simply cannot win. My latest problem is due to the edema in the genital area and edema in the upper thighs I have worn through the skin on my inner thighs and cannot walk comfortably. I passed out in the afternoon, finding sleep an hour at a time or so in bed and the recliner. Inger came in from working n the yard planting and found the strength to work me over. Unwrapping and doing the MLD routine as required. Don’t touch demtestickles, whuteverudu as they say in some parts of Southern Indiana. That is our motto. Ah well, now I have to go pee. Tomorrow is another day so I will go on, with two female pads stuffed between my thighs for protection, just another night in paradise?

May 25, 2010 Ridin' With The Lortab

As I write this the dawn rises on May 25. So far I am feeling pretty good. After the long day yesterday we dined at Skyline and upon returning home I passed out for about 6 hours, awaking only for the mandatory draining of the bladder 3 or 4 times. At present I am riding the high of a Lortab, at mid point of its 4 hour window. Typing is getting a little shaky so it is time to take a break.
Today is Tuesday and another hour in the automatic Inger at physical therapy. It's just not the same thing to have the strange contraption panting and wheezing and it compresses and relaxes up and down my lower half. I could get used to it but not on the treatment table I must sit on. My leg has improved enough that I can walk farther with much less discomfort although I am far from being able to make more than a few hundred feet at a time. My feet are still too gnarly and bloated for normal shoes. The modified sandals with bungee cords and metal spring clips get comments from everyone, as well as the stick I carry that my Dad made of a vine at his river cottage so many years ago. I hope to feel well enough for the gym in the morning.

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.

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.

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.

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.

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.