....no light without the dark?

Getting your doctors to laugh with you... not so easy at first, they are under great stress: to be serious, to be respectful, sober-minded. Then there's me. "Oh, really? You don't say," oh that explains so much now (at least to me) about how I have been feeling living in pain these last several years and had no luck in diagnosing it.

Anecdotal evidence. Spasms of intense pain in certain areas of the back or neck or shoulders, often the hip would feel as if it were going out from under me like losing control of the leg. It would hurt like that for a week and then move... or disappear and hide. For 6 months or a almost a year at first they would come, linger and then go again without so much as a wave. Then they would stay longer in some areas and make it nearly impossible to function, leave out normally. Add in repetitive work of a somewhat abusive nature and you get near paralysis. I was quite afraid that I might cripple myself if I turned or lifted the wrong way... it doesn't take that much really, people have seized their backs doing far less. Anti-inflammatory drugs of various kinds, too much ibuprofen just to keep on working, can't afford to lose an hour of pay!

 Acupuncture was the ultimate cure for the plan-tars fasciitis, a crippling ball of twisted nerves, muscles, and ligaments in the feet (or blocked Chi). Yoga, and meditation had it's positive effects, along with chiropractic work that did give some great relief with massage. All of which helped in some way to keep me going against that something that was lurking within me.

"...by the time it shows up it is already stage 4," means it has been there a long time flooding my lymphatic system and causing inflammatory reactions that manifested as  joint pain. Bring in the increasing sense of fatigue and diminishing desire to move unnecessarily, everything hurts. No laughing matter! Forget anti-discrimination laws ageism is alive and well and my hiring range was expiring unless I wanted to compete with a retired MBA to bag groceries (degrees trump experience), or become an official greeter at Walmart, whose name I hesitate to state in these hallowed pages. Besides, I usually have too much experience, and a colourful job history making me a candidate for the forgotten interview file. So really anything I could do with my hands in my own time were about the only options. Fortunately playing the guitar does not hurt my hands; in fact I was having a problem with "trigger finger" and playing the guitar healed that! On the other hand making a living as a musician is a risky deal when you are young and well, (and maybe even talented). None-the-less at least I can still do it, building houses and rebuilding engines, and refurnishing top floor apartments are beyond my physical strength; I can still play music.

Convincing the doctors that I have a (macabre) sense of humor, has been a challenge but every now and then we lighten up by getting a bit dark. Believe it or not Dr. Virginia Broudy and Dr. "Eddie" Marzbani, and their team of surgeons, technicians, and nurses have been a very bright point in my corner of the galaxy.

...that was then this is now.

Wednesday morning o'clock drowsily awaiting the magic cocktail that is engaging my adversary. My activity level has been low the last couple of days, I talked, I watched a couple of movies and reserved my strength. I really felt "fine" (it's all relative to what I call fine at any given time based on my experience of better, or I've been worse...) the first 3 days after the first infusion round. Then, as some people once used to say "the drugs began to kick in," (who was that Hunter S. Thompson?) and the roller-coaster ride rumbles to a gut wrenching start. Built over a general landscape of vague shadows, indistinct images, unsteady wheels, and a haunting mystery that the game is afoot leaves me with the unfocused suspicion that I'm just not quite sure what I think about it.

That was 25 days ago... it has not been all-bad, so-to-speak, and there have been moments of fun, the simple things in life, laughter and children, music and stories, working together on small art projects. I promised a live blogcast from 8SE but that proved to be beyond our tech and the nurses were keeping me busy doing their
wonderful nursing things, and doping me off to nap-nap land where I have no concept of time except the grey sky outside gets dimmer.

It is of course getting dark earlier now too, and the autumn colours take me in to their mood. I have watched them at times my eye catching them as their connection with the limb and floating gently to ground. How often does one observe that singular lonely flight to earth?

...the grey glimmer of dawn attempts to intrude.

Flattened. Like roadkill. Staring at the ceiling with a kaleidoscope of thoughts, dimming as I doze again, thankfully, morning will indeed come soon enough. My stomach groans, the bathroom beckons, it may be another false alarm. Enh... back to bed for a while perhaps - what time is it? 8:40 AM the room is grey in the stormy dawning light, day is slow to come, "give me 'til 9 anyway maybe then I'll think about coffee and light in my eyeballs!" I burrow into the blankets and peaceful darkness comes again.

Finally, a little more gently this time awareness returns to me. I take an anti-nausea pill. Yeah, it's lighter but not harsh, bathroom again. Feeling gutted like a halibut, I sit. A non-event. Literally nothing happens, ah- except a note from the tuba section. Someone had asked me how I was doing (and this came up again at the Drs. meeting later this afternoon) and I complained that even though I was trying to eat and keep my weight up that the constipation was killing me except when I would eat the plum soup I had made and used to pressure cook a roast... anyway, when that stuff hit the results were "epic," I said, "Wagnerian movements. http://youtu.be/7AlEvy0fJto With all necessary bombast." "Then the tubas and trombones come in," she (my personal witch-doctor) answered. "Next thing you know we'll be hearing from http://youtu.be/qW4C2h3lPac Tchaikovsky..." "Yes of course with the basses and the cannon." Oh if I didn't laugh I think I'd die. Almost even got the Dr. to laugh (sly smile), they try to be so serious. Well, I do appreciate a serious mind when you are talking medicine, but the human parts of how one feels, how one gets through the day, the night... the mornings when getting up probably doesn't matter, facing the afternoons where you might get something necessary done. What? Take a shower, dress, get some food, feel like eating it, see a friend, mail a document (oh that would be another story). Yes, Dr. I am in a safe place, there are people around to make sure I am still kicking. People are very important; family, friends, neighbors, even at times the unbidden kindness of strangers who have no reason to know how they have enhanced your life, like the sandwich maker at the local deli... she took extra care with my order, asked me if I wanted things that were not normally part of that recipe and took the time to give that special touch. I could feel the kindness emanating from her motions. I must say that it was an Awesome sandwich, one of the best ever.

I am happy to be in the superb care of the people (physicians, surgeons, nurses of all kinds, and other treatment technicians I can't name, pharmacists and appointment takers) who have taken part in my treatment. You are the best examples of western medicine and patient care.

By the way, they say the numbers from my blood-work are up, good, the way they like to see them... yes, get plenty of rest. I am certainly tired enough. I try to focus on the immediate things of the day, and then keep in touch with folks for emotional well-being. Sounds easy, huh? No, it is work of it's own kind, and the battle is being fought within my own veins, and in my bones, oh I feel that alright. The siege guns pounding all through the day and night, we must have taken another hill, I feel like roadkill. Flattened.

Hematology, the big meeting.

This was of course the installment that we all were waiting for (me, my friends, family) after the full body CT scan, the doctors would reveal themselves and I, the participating patient might actually get the full rundown on what it was that one had.

Up until now it was merely assumed among us laymen that it was cancer of some kind, what kind and how bad remained to be discovered. In fact there was one more little procedure that would tell the whole tale. The bone marrow biopsy. "Easy," he said, "I've done a hundred of them." That's Doctor Marzbani, a charming fellow who says he doesn't see me as "old."

One might have wondered by now why I chose to name this blog "anxiety as a motivational principle" well; it was one of those thoughts that came out because I know a number of people who suffer from various degrees of anxiety. Not without reason mind you, this is no "cosmic" paranoia, but based on joblessness, or fears concerning survival and the well-being of families, a desire to be productive in spite of health issues that prevent consistent gainful employment. Some things you can do for a short while, but a 40 hour week, after week after week, the body can no longer take that the way it once did and if you can't hide it eventually you're fired. Anxiety. It is the fuel of the jungle. The leopard stalks, the antelope runs. That anxiety is the natural fear of the night. The sounds beyond the firelight, it motivates us to stand guard, to gather firewood early, to sharpen our spears, and our ears. That anxiety has expression and reason to move us for safety sake, yet now our efforts to help ourselves are frustrated and the tension builds, our sleep is broken, the calm shattered by fear of the unknown against which we cannot defend. Sometimes you find something is going for your throat, a bit brutal, but life nonetheless, Anxiety motivates one to action, to fight for survival becomes the foundational function. Where can you run or hide when the enemy is inside you, in fact it is disguised as you. I get to talk to the Oncology team today for my first post treatment consult. Round 1, so far so good.

"...we don't like to talk numbers and stages."

Many of the informative internet pages (someone said don't do any research it will only scare you) give the general stat as 5-50% which means roughly that half of those who receive treatment survive 5 years. "Can I get that in writing doctor, that's a better guarantee than I had before I came in here." The other half... and if you did not elect to receive or did not receive the right treatment in time, that becomes much shorter. In my case apparently by the time one finds a mass such as the affected lymph I noticed then it has likely already spread throughout the system and is indeed in the marrow, which the bone marrow biopsy confirmed, it is stage 4. It is not considered curable but can be survived by reaching complete remission (CR). It accounts for 5% of non-hodgkins lymphomas, it is called Mantle Cell Lymphoma or MCL. http://upload.wikimedia.org/wikipedia/commons/thumb/0/08/Mantle_cell_lymphoma_-_intermed_mag.jpg/400px-Mantle_cell_lymphoma_-_intermed_mag.jpg 

So the main question I have had to ask myself is how do I feel about that. Some people think my dark humor is in poor taste, however at this point like I said "taste is irrelevant." 

So can I get that 5 years in writing? Only I can make them the best or worst years of my life. My life? That is of course another story all by itself....