Wednesday, July 23, 2008

Steroid Rambler


Billy Myers inherited a Pink Rambler Classic from his sister back in high school, and man we had fun in that car! I am starting the daily photo so we can see the effects of chemo on me over time - I will try to take this same picture at the same time each day.


4:20 am So please forgive the long and twisted blog. It turns out 120 mg of Prednisone will kick 10 mg of Ambien’s ass every time, especially if there is any other incentive to open your eyes, question your bowels, wonder what that noise was, feel that wad of stuff that you can’t quite swallow in the back of your throat, or jump out of bed and try to capture the effect of all the ambient light in the room. I woke up at 2:30 and I’ve been fighting it since, third day in a row. Tonight I will go to heavier artillery and mix an Atavan with the Ambien. I have the stupid acid reflux again, so the night nurse brought in some Mylanta and I’m hoping that will kick in. I walked 4.65 miles yesterday, 8784 steps, and you’d think that would burn off some of the steroids. Shoot, without that walking I might never sleep.

In that time between 2:30 am when you wake and 4:00 am when you finally give up on sleep, in the midst of relaxing techniques and attempts at emptying the mind, instead I get filled with the wonder of the universe. Is it possible that I stepped through some funky wormhole back to an alternate 2005? Is this something like February 14 2005? If the universe is ever expanding, and there are tens of billions of galaxies, maybe 100s of billions of galaxies, is it even comprehensible? If you are in a place with starry skies and you can see the Milky Way, our galaxy, ponder the incomprehensible. The more I have ever tried to understand it, the more I know I can’t, and the act of faith is to know I cannot know. So I could just be mixed into a parallel time/space and going through the exact same shit, only different.

I have been taught in the scientific method, and always look to figure out what survival advantage was gained by any behavioral or physical aspect of an organism or species. Unfortunately one conclusion I come to is that there will always be individuals that will claim to have the direct connection to the all-powerful all-knowing essence, and that they are not necessarily motivated by good intentions. Examples abound from the dawn of man. The caveman that could explain the eclipse became the shaman. Etc. etc. And somewhere back in the ages, some Italians settled on Ischia, a little island off the coast near Naples. They had some survival advantages – I know this because I am here. And over in Ireland (or England or Scotland, which is it Mom?) there were some other people that made it through the conquerings, the massacres, the plagues and famines, because they had survival advantages.

Now all I have to do is to tap into those survival advantages that are being carried around in a whole bunch of people; I have to figure out how to get every Irish-English-Scotch-Italian Northern European mutt in New England and New York to go get their cheek swabbed. I think this may be a huge advantage for any given gene pool, to identify the saviors in the population, the ones with the best new mutations. I have always thought that eventually the whole population of earth will become heterogeneous, as advances in transportation allow interbreeding to occur. We attempt to stop this socially, but it is only a matter of time, or so I thought. But it could be that there are mysterious biological forces at work, chemical scents that push us towards our own. Dana is almost the same gene pool as me, Irish/Italian. I should probably get serious about tracking the family genealogy.

I am working on ideas to advertise in New England and New York if none of my siblings match, maybe banners at Boston Garden, an ad in the NY Daily News, internet spamming. We’ll cross that bridge if we have to. Meanwhile I have mentioned to my siblings to take care of their bone marrow.

Many of you are sending good thoughts my way, be they prayers or moments of focus, and I do believe that regardless of what you call them or how you do it, there can be a channeling of energy towards a core healing. In the dark hours while I ponder all that is happening, I try to gather that energy and focus it inward, to tell my body to heal itself, to kill the little mutant blood cells. It seems to be working.

I was standing in front of the mirror after shaving, getting ready to go for my after-lunch walk, and I had this thought that I should focus every step as a step to healing. I was repeating this mantra, ‘I am healing, every step I heal’, and I started to go back to Zumwalt Meadow in King’s Canyon Park in my mind. I am walking down that trail around the meadow, and the light is just emanating from that meadow, and it gets brighter and brighter. I am trying to walk into the center of the meadow and soak it in, and I get some of that healing flash just as in ’05, and it brings tears to my eyes, just as it does every time I retrieve that healing memory. It brings the overwhelming sense that I will be alright. But I can’t focus long enough. Instead I notice that I need to trim my nose hairs, and I missed some spots shaving. Focus! I have to work to get back to that place.

I had a great day yesterday after a rough start with the early wakeup and diarrhea. (I am backing off the Metamucil before they insist on the white hat.) At first I was feeling nauseous at 7 am, but I told myself it was hunger, and it was. Sausage and eggs and I was fine. All 6 doctors piled in my room later and said basically ‘Well, you are the man, sucking down chemo no problems, taking charge of your space, we are taking you off the IV after you get potassium and magnesium today.’ Yippee-ai-o-tai-ay, m@%&*f$%^&*er (that’s a movie quote, Mom, so I can say it – Die Hard). I asked the doctors what they thought the time frame might be, given I am not sick yet, and they said it wouldn’t be as short as last time, but that the Neupogen they are giving me this time will shorten the WBC recovery cycle. Maybe 4 weeks. Last go around was frankly miraculous in 21 days, and how many miracles can one man ask for?

I also asked John, yesterday’s oncology nurse, how I came to get the single room. He told me it was pure luck, it was the only room available the day I got here, if I had come the next couple of days I would be in a double room until I became immune deficient. So as much as I railed the mistakes that seemed to waste 3 days, I have to think it was meant to be. Just about everybody else lays around in their beds, and I think it is partly out of kindness to each other, so they don’t disturb each other. And I think their ill-feelings are infectious, too. So I was pretty lucky.

So after lunch I am done with the IV, gather up a book, the crossword, a notebook, and off I go, free to wander. I am wearing the mask but so what. I am not neutropenic yet but they want the mask on. I push the boundaries of where I am supposed to roam, which is not outside the perimeter of the Hospital. I think that is an ill-defined border at a teaching hospital, and the intent of the rule is that if I collapse someone will find me. Well there are thousands of students walking around, and I have an armband on that shows I am a patient, and everyone has a cell phone, and I feel better than the last time I golfed, so what the heck, I roam.

There is a four-piece jazz band playing by the Children’s Hosp. cafeteria. The music echoes off the buildings and fills the space in a pretty cool way, so I listen for a while. Today there will be some kind of music in the atrium right here outside F Ground (home). I go to my secret rooftop garden and do the crossword and read for a while, then I go to the Stanford Cancer Center where I find the perfect massage chair sitting in the hallway of the second floor. Only problem is the remote is so beat up I can’t get it to work – too bad because I was going to use the calf massage unit. It teased me a little, then dropped me as though I was unworthy. Hey Bruce, talk to corporate, I wonder if Relax the Back wants to make a donation of a refurbed chair?

Next I wander out to the fountains. As I approach there is a young dad and maybe 10-month old girl in a stroller, and she is just bawling. I think, well, this will be relaxing, but I sit nearby anyway and think, don’t complain, they were here. The fountains are nice because the sound of the water is soothing. The young dad is trying to distract the girl by pointing out the patos, the ducks, and the patitos, the ducklings, and the fountains, but she does not care. Inside my head I am saying ‘Pick her up, she wants you!’ He actually starts yelling ‘Look at the ducks!’, and I can see he is getting frustrated. Maybe his wife is in the hospital. I am actually thinking that I am going to have to take this guy down if the shit goes down, and he is in good shape, 25, and I am not.

Oh ye of little faith. He picks up his daughter, coos to her, walks her all around the fountains for a while, and she is perfectly soothed. When he comes back by me he sits on the ground fifteen feet away and puts his daughter standing by his feet while he supports her, and they practice walking. Watching them I get the sense I am seeing a moment, maybe first steps, and sure enough she takes a couple of exploratory steps and Dad is exhilarated, exclaiming his joy. It was great. I asked him as I left if those were her first steps, and he said they were. I wished I had the camera with me because I may have caught it, and I was left wondering about Mom and hoping she wasn’t inside the hospital and would blame herself for being sick and missing the baby’s first steps. Yin yang.

When I get back to my room it is almost dinner time, and danged if they didn’t have the best meal yet. Topped the SLAC generated salmon from yesterday – cilantro grilled chicken breast with parsley red potatoes, man it was good. And hey Mac, I know it was all natural because the chickens are all running around in the gardens and there were fewer yesterday than Monday. If you have Google Earth, put in Stanford University Medical Center, and you will see as you zoom in the letter H for SUMC RDO, 875 Blake Wilbur Drive. I am in that building. Just to the north you can see the Lucile Packard Children’s Hospital, and you can see all the gardens on each level including the perimeter rooftop garden. To the south you can see the fountains, and if you zoom around you can see all the little secret patios and gardens (thanks for pointing that out Cyle).

I felt so good after that dinner that I walked all around again, another 2 miles. I went over to the Rodin garden again and listened to some knowledgeable person talk about the sculptures to a class, and when I came back it was time for 8:00 snack. Lo and behold, there is ice cream in the kitchen’s freezer, free-for-all, those little cups that won’t give you acid reflux. So I mixed some vanilla with half of one of Kirstin’s cookies, and had my best dessert yet. Sure I paid for it this am maybe with some acid reflux, but the fire is quelled. The nurse told me Prednisone may be what is firing up the acid reflux, so I will just make them leave the Mylanta with me so I can take it at my need. A small rule breach, but I can’t see stockpiling Mylanta for some wild party.

I just remembered I saved soup last night, and had my 6:00 am breakfast, mushroom soup with crackers. 7:00sies should be here any minute.

Today I get shot #2 of Vincristine, 2mg, an old cancer drug made from Vinca minor, commonly called Periwinkle, out there in your garden. Over the next weeks this 1x/week shot will numb my fingertips and make me a lobster for Dana’s arts and crafts fair in room 30. They will come pump me up with Prednisone soon, and I will try Qigong or Tai Chi again, but I keep getting it backward because the instructor on the DVD is facing me. Does it matter to my chi? Will I be yang-yin instead of Yin-yang? And hey Mac, Jack LaLanne does live in Morro Bay, he used to come down to the rock in a big Cadillac and sip wine. He has never had acid reflux, nor ice cream, nor cake. He can swim to France towing a nuclear accelerator while filming exercises for the geriatric bunch. He may be the next governor!

I have been trying to make this blog show comments and only the current post, but I am failing. So be sure to click on comments and check on the ramblings and ravings of the ones I love. Man oh man I can’t imagine Mac on steroids; that would be something. And I love trying to follow Pat’s leaps, keeps me nimble.

11 comments:

  1. You, Dana and the boys are in my thoughts. We are all out here carrying on, and you are there fighting for your life. I think of you as a swashbuckler, leaping from the balcony, engaging the leukemic bastards in battle, slashing at them until they lye in bloody pools across the battlefield. Cry ‘Havoc’ and let slip the dogs of war!

    Hmmm, apparently I am channeling Shakespear this morning. I should be channeling some work, but I need more coffee. More excitement. More something. Perhaps a change is in order. Perhaps I better hide this document before I am discovered and publicly exposed ala Valerie Plame…..

    I will try to sneak in more chatter later. BTW, thanks for letting me know about the chocolate before I made the brownies and was forced to eat them all by myself!
    hugs,
    Lisa in SB

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  2. I love that quote so much I had to google it up: From Julius Caesar:
    ANTONY:
    Blood and destruction shall be so in use
    And dreadful objects so familiar
    That mothers shall but smile when they behold
    Their infants quarter'd with the hands of war;
    All pity choked with custom of fell deeds:
    And Caesar's spirit, ranging for revenge,
    With Ate by his side come hot from hell,
    Shall in these confines with a monarch's voice
    Cry 'Havoc,' and let slip the dogs of war;
    That this foul deed shall smell above the earth
    With carrion men, groaning for burial.

    Havoc here means to pillage, so the call is to the men to destroy everything. I am the army, this is war, and I will leave the carrion of these lymphoblasts strewn over the field; let their mothers beat their breasts and rue the day!

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  3. whoa whoa whoa...

    thanks for reminding me to check back and look at the comments! saved me from missing out on the day that Mac came very close to getting out of control.
    I am pretty sure that even Jack LaLane AND the Governator don't want to be around when THAT unfortunate incident happens.

    Me, I wouldn't miss it. Fact I'd run a t-shirt concession if I thought anybody'd be left standing to buy one...

    So, speaking of heritage and survival...
    my grandmother always told me a word to the wise is seldom heard, but here I go.

    Much as I admire your mathematical abilities (because I don't have any), I think it might be about time to let go of them a little...and forget about the odds. Who's odder than you are? and stop asking stupid questions.

    a man can ask for as many miracles as a man damned well pleases. and the man should expect results even if he is temporarily off his regular collective ass kicking schedule.

    just, you know--be careful how you word it...

    clap on

    clap off

    M.

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  4. John....i am crying in awe of your strength, your wit, and your journey. Puts the stupid daily crap in perspective.
    Kisses from SLO
    Heather

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  5. John.
    I am glad your rambling brought you back to the pink Rambler. We did have a great time with that car but the Karmin Ghia and your Father's Pontiac remind me of some wild experiences, especially with you behind the wheel.Keep up your great attitude.We are all thinking of you.

    Bill

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  6. yeah, Billy--it got even wilder after he got his license, huh?
    pat
    (not that I was ever in the car with any underage drivers Mrs. Fiore)

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  7. Hi John and Dana,

    I'm sorry that you guys are going through this. Just know that you are my heros.

    Love,

    G & the Kirkland clan

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  8. Well I am sorry for any years I took off anyone's life with my early driving style; I probably especially owe that to you Bill. No comments please Dana, thanks.

    And you're right Pat, the odds are exactly 100%, so forget the odds and unleash the hounds.

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  9. John,
    Well hopefully this comment will make it to you. This blog stuff sucks:) Sooooo Prednisone, Huh? It should be called "Become Satansone". I remembered that when I was on it I tried to crawl through my car window, that was rolled down an inch, to tell a kid off for making an illegal turn in front of me. Wow that stuff is evil.

    I was so sorry to hear that you are out of remission and have to go through it all again. It is just not fair that good people always seem to be the most tested ones. You truly don't deserve any of it. I am glad that you are still doing pretty good. I was sooooo sick from day 1 that I never left my bed. Even the doctors said I was the sickest person they ever saw. They did everything they could to make me comfortable. They have an amazing staff there in Stanford.
    I saw the chicken and I must say, My chicken meals never looked that good. My chicken was dry and tasted like Pooo. I do remember when I found the ice cream, saved my life. Is there stll flouresent stuff running through your body? It freaked my husband out. I'm glad that Dana is there for you, it really helps to have someone there with you at all times. Brett never left me alone and between him and my mom I lacked for nothing accept good food. The good food thing didn't start until I was no longer Neupinec (however you spell it). Order from the childs menu, they have Fish sticks and the best Marcaroni and cheese. The Pizza isnt' bad either.

    I checked in the off site housing where I stayed at and I can't find any information. I do know that the a woman from the Social Services Department helped us out. The apartment we stayed in is right accross the street from the main enterance and to the right. It is a pretty cool apartment and they have a pool and some kind of activities every night. I'm sorry that I can't remember what it is called. Your know how the memory goes. Is Maureen O'Hara still there? If she is tell her I said Hello. I donated a bunch of Movies last Christmas and I'm sure you'll enjoy some of them:). I keep you in my thoughts and prayers. Keep strong and don't forget how much we care for you.

    Marlena

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  10. I was thinking you looked a little Yodaesque in your most recent photo. It must have to do with your insight. You're echoing some Yoda-isms as well:

    [[Do...or do not- There is no try.

    Control, control, you must learn control!

    Great warrior? Wars not make one great!

    [Is the Dark Side stronger?] No...quicker, easier, more seductive...you will know [the difference] when you are calm, at peace...Once you start down the dark path, forever will it consume your destiny.

    No, no there is no why! No more will I teach you today - Clear your mind of questions.


    Size matters not. Judge me by my size, do you? Hmmm...and well you should not! For my ally is the Force, and a powerful ally it is. Life creates it, makes it grow. Its energy surrounds us and binds us. Luminous beings are we, not this crude matter! You must feel the Force around you, here; between you, me, the tree, the rock, everywhere!...yes, even between the land and the ship.]]

    It's a great blog. I want to know and not know what's going on with you and the strategies you employ. It's easier to skip a day and remain in denial about what your family is enduring.

    But then, you get us hooked. We care and we want to know. We want to help. We want to cheer the good and slay the bad. Makes for quite a bedtime story 'til we wake up and you're still fighting.

    Thank you for keeping us in the fight with you.

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  11. Dear John: I have just spent the last half hour catching up on your blog and crying in my tea. I have been so emotionally fragile myself these last few weeks, I have been avoiding it, but now I'm embarrassed. Yes, you are putting life into perspective for many of us!! What an incredible fight you are in and I have no doubt you are up to this challenge again. I like your analogy of a journey, one step at a time, that would be the Buddhist way. I wish now I had thought to give Dana my Peggy Huddleston book and cd, I will box it up and mail it to you. When I had my surgery two years ago (and my minor scare with the big C), I listened to her cd religiously, twice/day. The cd is a meditation and it's all about visualizing yourself whole and well and vanquishing the bad guys. Sounds like you are on your warrior way to that way of thinking anyway, but, as you say, it's keeping that mental attitude every step of the way. This may help. I'll send not only my good thoughts but Ms. Huddleston's as well, since I can't even send you chocolate now!! (and chocolate is the answer to almost all of life's slings and arrows!) Hope to get up to visit you soon. Big hugs and kisses (well, maybe not the kisses in your present state, Cecelia ( and I'll get Brian to work on the led lighting in your room!)

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