...as I was saying; uh, what was I saying?

PET/CT imaging revealed changes in metabolism in brain regions involved in long-term memory, mental agility, decision making, problem solving, and prioritizing.

http://www.webmd.com/cancer/news/20121129/chemo-brain-real

http://video.msnbc.msn.com/nightly-news/49986490/#49986490
http://youtu.be/cEDRVueEYp0
Bendamustine video
Oh yeah, that I set myself one goal per day. I may manage to accomplish more than that, in that case it's all gravy. Oh yeah, that I am trying to keep my weight and more importantly my health; up! It also depends I have found on which SIDE of my brain is being called upon. For instance, if it takes focus and computations, and rigid definitions then it must be a left brain function, and well, my left brain cannot always accomplish what the right brain may recall was on the agenda at the time the left brain is not being distracted by what the right brain is thinking of.... did that make sense?

Still I keep trying: I will see if any of these links work the way I like and if not-

12-13-12 .... and the arrival of the

Holly King! Smiles and cheer and a cornucopia of satsuma oranges bringing light to the dark lands and some smiles to  8 South East, the infusion suites at UW Med Center. Could see the mountains outside to the East and the sun shone below the cloud line and highlighted the new snow, with the few trees that had not been wind stripped of their autumn finery floating in the foggy foreground.

Yeah, I'm back again. I wonder each time... and I never quite know what to expect, but so far I tolerate the process well, and thanks to the love and support of those around me I am able to get through it although I am now starting to notice a pattern. It is hard to describe how it feels to know that this stuff that is not your blood is being mixed so that it will travel throughout the body. Completely. Of course that's the point, there are even things to help make the patient feel stronger while this is happening. I knew for the last 2 that I probably had like 2 days before effects kick in... well, and Saturday was it too. Wonderful to see those who came out for my survival/birthday party. I have survived 58 years, and that is with the humility of knowing that it is not by my own hand that I live. Someday I may recount the times (while I yet remember) that I have seen the scythe of the reaper flash by my nose.

Where was I....? It is now Friday the 21st of December 2012, the world still turns as it always has since any of us can recall, and it is sunset now which in more ancient times was the end of the day. The last 5 days have been more of a blur for me, not really able to rise before noon, and yet tired all day, and being asleep by midnight as though I had been training for the next marathon. Sometimes it seems as if I am running in sand... 

...wait a minute, what was I gonna do? I do try to keep up with life and what's happening, actually it is quite disturbing most of the time. Keeping it simple is easier than it sounds when you start counting your energy nickles and they don't go as far as they used. I am told I need to focus my strength on getting well, yet I feel it slipping by, I hope it doesn't take too long.

...the real meaning of love.

Just a thought provoking thought, thought by someone else about a thought that is in some way important to us all and was given to me by this someone else who had this thought and put it to music. Yes it is bigger than it looks. Seems like a small thought but again looks can be deceiving.

I have my 3rd Round of chemo treatment tomorrow, part one (anyone like the date, 12/12/12?) It's suppose to be a good number, so I take my charms where I may find them and we all hope for the best in life in our own way. That often does not mean the same to all persons and is probably the root cause for many ancient and modern conflicts. Finding someone with whom you share demonstrably similar meanings is the rare trick, so to speak.

I can feel a part of me that is saying, "you gonna do that again?" I answer back,"they say we're winning the fight, and we ain't as damaged as we might have been..." The location of the mass that showed itself last April has reduced since the treatments began, and my blood seems to be good stuff. Lot's of red and white cells doing their jobs and my job is to feed myself and keep my nutrition up. I am told my weight is stable, and everything else seems fine, even to my eyes. I just feel... ehn. It must be the grey days, and inhabitants of this city all know or have heard tales of the "ehn." This is the equivalent of "meh," but with far less conviction while requiring far more commitment.

This thing with the so-called "holidays," can we lose the canned, badly played 5th rate winter scenes muzak? really?  this stuff was as bad as 10 year old unwrapped fruit cake, which I have heard has some previously unrecognized industrial properties, including a tax-deductible storage container for nuclear waste. Could be someone is pulling my maraschino cherries. I will be okay, like almost normal for a couple of days after the infusions, the benedryl and the steroids make one feel stronger. Then... well we will see what Sunday brings besides me being a year older and another hangover, of the chem-cocktail kind.

Beached, under a rock, one flipper reaching...

...skyward as though some invisible hand might dangle remotely within grasp, part of a dream perhaps like the rabbit hole of a thought becoming a motion, then motion becoming movement. Take a breath, ok, now what? Get up.

... and so on, ho hum, not much to do under a rock. Well, if you get up and make coffee you can wait until you smell it-

Right, take a med. Lay down. sometimes the fog rolls in like a spooky night in Old San Francisco, almost like it never left, or like you never did. What was I doing-

Sleep is preferable to misery, the meds don't make you, fatigue comes from that quiet battle in your body. The nausea would wake one, does if I let it go too long-

Coffee! Oh, ok, here I go... well it's not always that easy (haha) but it puts in a nutshell the general story of the past 2 weeks. I seem to take things alright the first couple of days after a Round (only 2 so far), by Sunday I am wiped, and the fog rolls in-

I did make it to a Thanksgiving Feast which, gratefully, I was not in charge of cooking. I can usually turn out a meal of nearly edible vittles but lately the spark has been low, the results dubious and unpredictable, and my interest in food in general; well it isn't that I don't like food, and at times when I DO get hungry I eat a fair amount, just getting to that is a challenge. Yeah, I make myself eat, sure is less of a struggle if it cooks quick, the prep is low, and the results not too surprising.

 That's about my speed these days, I get this query from the waitress... you know, "how would you like your eggs?" Several years ago I got a bit bored with questions like "do you want regular fries or seasoned fries with that?" and the usual "paper or plastic today sir?"

Me? I'm down with why do I have to think about that - are you kidding me - just give me a bag that will get my sh- home with out losing it and I'll be quite happy... so. Eggs? Alright I stopped short of answering "cooked." I do not intend to be rude, and I am even careful with some as a sense of humor is mandatory:

"Surprise me..." 

I mean it, within reason please, nothing that is not normally on the menu, in the range of sunny-side over-easy-medium-hard scrambled poached boiled Benedict. It just hit me one morning that by the time I had chosen sausage over bacon, pancakes over waffle and hashbrowns over toast just bring me the coffee with the creamer I am done with the pre-breakfast decision making.

How do I want my eggs? Like I said I really appreciate that most enjoy the levity. Slow night, and this funny long-haired bearded guy says "surprise me."  Kind of like the search engine question "do you feel lucky?" Well, I have truly been lucky I am sure! 

I have heard from an old friend or 2 lately for which I am thankful and happy. It is great to hear from and see current and new friends when I can. There is a health aspect to socializing in the right amounts and environments. I am going to see the Hobbit on my birthday, which following the Trilogy should be the best version yet. Great fun, just before going back under that rock... well, I may not encounter that same under-seascape again, perhaps I'll get lucky. 

....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....

... so you took a little extra?

"I knew that."
"When did you know?" The pre-surgery screener wondered how I knew the diganosis before I had actually seen the results.
"About a week ago actually, I was meditating and it just came to me. Oh so that's it then..."
But I only knew the half of it. This was the day of my consultation with the Ear, Nose, and Throat people - my pipes are on candid camera, my tongue the star of it's own movie (see yourself swallow) oh my. I had been having random episodes of waking in a panic as though suffocating, sometimes dreaming of being trapped with no air. Other times things were getting hard to swallow, like more than one asprin or even a bit of lunch that got stuck part way. This explained plenty. The "lump" they called the mass was bigger on the inside and at times blocking my airway when I slept, especially if on my back, or on my left side.
"What are you doing tomorrow?"
Nothing on my to-do list, "what do you need me to do?"
"Well, we need a surgical biopsy soon..."
I had heard the "voice" about a week before, "it is lymphoma" it said. No one had said any such thing to me as they seem to err on the side of caution when using any definitive terms. My brother had asked me what the "good doctors" said, "take this and that and more tests!" I told him which was the whole truth, nobody was speculating about anything, so my body tells me in that quiet firm voice what it is.
She had looked at me a bit dubiously and took it at face value without further comment, but later said she was a lymphoma survivor. It was offered upliftingly and I took it that way. So what I was doing tomorrow, was going in for surgery the next morning, and I would be going home by late afternoon. Piece of cake... not much can be said about the procedure (I slept through the juicy parts), but the prep staff had kept my mind busy with questions and reassurances, and before I knew it- boom I was waking up in recovery surrounded by friendly attentive angelic faces surprised that I remembered names from earlier that morning. It had apparently gone swimmingly, I took my "meds" as directed and the site healed and I arrived at the surgical follow-up the next week. Life was a bit more normal by then; water ceased tasting like battery acid, I made it through by powdering all pills and mixing my dose with pudding or ice cream, or my morning oat meal. It is a bit bitter but you choke it down with your mind on the positive results, antibiotics and pain killer means healing and comfort. Taste is meaningless.
To me the site did not look good (candid camera again) but you could see how the airway was much less obstructed. They are not usually quite so aggressive in these cases however... "So you took a little extra?" The compassionate brown eyes rolled at the word little, I was getting a hint. They took as much as they dared without endangering surrounding facial and neck structures. I used the word again, the eyes rolled again... I said, "ok so I am getting that it was more than a little and it is not your usual procedure...." In fact they had probably saved my life even then because since that time I have not had the suffocating attacks, nor any obstruction in swallowing. Given a little more time without treatment I could've... well, I don't snore like I once did either. Big Score for Quality of Life!

... just so long as it isn't life threatening.

Actually Life is a non-sequiter, like stepping onto a rapidly moving walkway with no warning. Boom! You're on your butt before you can even grab for the handrail. Oh they didn't mention handrails? Well, grab something and HOLD ON!

Waking up in the middle of an important conversation that is all about you with no apparent context and absolutely no reference point.

It had been a hell of a winter, whirlwind trip to the grandparents for a big family Thanksgiving; meeting new arrivals to the family, members of inlaws rarely if ever seen. Back to the real world, a flat tire before arriving home... and 4 weeks to move my son out of his apartment. Going to "have-to" find someone to see my worsening tooth condition before it does something evil. In February we locate a friendly neighborhood clinic where they agree to examine my mouth and prescribe anti-biotics for the infection and swelling.

"I just wanna be sure it isn't life threatening, if it's benign I can live with it...."

"If I get you a referal to see a specialist will you go?"

"Yes, of course."

"I want to do some more blood-work, take this to the lab and then make an appointment to come back in 3 weeks."
Well, I did but it was of course inconclusive (more tests!). And the calls for appointments started coming, which I kept. went through all the obligatory motions, complied with all requests, supplied information, and went where directed. My patient advocate (personal witch-doctor) was my shield and my witness, moral support, consolation and navigation on this voyage.

Hey Doc, what's this? I was quite casual but specific about the small lump under my right jaw... so begins my story in a very non-sequitorial way. In the middle of some other thing, kind of like a third random shoe dropping in the otherwise silent night. So this blog begins October 12, 2012 which seems a nice number somehow...

Please read the rest of the story which is still ongoing as I live and breathe, and navigate the straits of chemo-therapy for http://www.webmd.com/cancer/mantle-cell-lymphoma I had sought out a dental clinic to get some teeth worked on, and they said my blood pressure was too high so I had to see one of their regular MD's before they would do such work to get the pressure down. I knew I needed those teeth extracted and the infection was the worst right then so I requested anti-bio-tics and promised to make an appointment since I knew the relief wouldn't last and the process would take a little time. Finally, all things fulfilled  hypertension under control the dentist pulled the 2 offending rotters and I went home happy. I knew I had a follow-up appointment with the doctor in a few weeks so I was concerned with healing and eating normally again...