Aurora

Aurora, goddess of the dawn, renews herself every morning and flies across the sky, announcing the arrival of the sun. With the aid of MLN8237 She flies through my blood each morning selecting only those cells with aberrant expression of Aurora A kinases, disrupting their assembly of the mitotic spindle apparatus, disrupting chromosome segregation, and inhibiting myeloma cell proliferation. Technical musing that add to the mystique of the novel drug I’m testing. Although feeling drugged drags up all kinds of cancer sediment this dip in the treatment pond has been rather mild.

Every morning was a cheerful invitation
to make my life of equal simplicity,
and I may say innocence, with Nature herself.
I have been as sincere a worshipper of Aurora as the Greeks.
I got up early and bathed in the pond;
that was a religious exercise,
and one of the best things which I did.

Walden, Henry David Thoreau

A New Year

I passed without noticing the 6th anniversary of my first bone marrow aspirate. I got to put off yesterdays aspirate through no divine providence but the typical intricately complicated and rigid guidelines of my next clinical trial. All such inconveniences must be done within 3 days of starting the trial (Jan 4th). Monday will therefore be most engaging. I have to admit Tuesday albeit most likely boring is scary. I’d like to keep my hair and the food that I eat in my stomach.
On another thought the past 6 years have been the most transforming of my life. Not of course without a high cost mostly to those that love and support me. Change is rough at times but I think watching it is much more difficult than experiencing it. I can not know what others feel only bow in humility to their willingness to watch. To all of you I am thankful for yet another year to look forward to.

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The VBiRD has Flown

The vultures  struck, plucked and flew away leaving behind minimal evidence of disease and I’m not even dead yet. On Monday after a summer of VBiRDing I am happy to say there were no serious complications, manageable (but significant) dexamethasone trauma and a response that makes it all worthwhile. Isn’t it nice how quickly we forget the shit that was so dramatic when it was happening. The mind is a wonderful thing. I’m grinning from ear to ear, basking in the glory of a 8 week reprieve from all things myeloma. Yup no drugs, no pokes, no dex, no weekly infusions and no abuse of all things not aligned with my demented mind.

The semester started the week of my last dex dose (August 30th). Chaos and entropy rained in buckets with occasional flashes of lightening and claps of thunder. It is extremely hard to show up to class prepared when staying on task is next to impossible. At least I had plenty to say, ample energy to say it with and no real need to be coherent, comprehensible or cognizant – there were (and still are) 360 rolling eyes staring back at me. Who is this whack job and why is this a required course? At least I find it entertaining. Lets hope there is  a bit of meaningful learning going on.

On the boring MM details front: there is no quantifiable indicative protein spilling out of my kidneys, no quantifiable M-spike, not quite normal levels of my malformed indicator of importance, lambda free light chains, totally normal blood chemistry including beta-2, LDH & CRP, my first normal non-anemic hemoglobin in over 6 years, and hopefully quickly recovering disease attacking antibody expression.

To counter the 4 months of twice daily Biaxin I started making my own kefir (pronounced keh f é-er [as in keh in kettle, and fear]) using organic grains containing over 50 pro-biotic bacteria strains and organic milk I added several isolated human strains from Metagenics to the culture as well. There is no regulation of the word probiotic so the implication that it is pro-health for humans is a fallacy. The back story being that just because they contain an acid-loving milk-bacterium (like a strain of lactobacillus acidophilus) doesn’t mean the particular bacteria strain promotes healthy digestion for humans. Sort of like not all cars are created equal. Porsche’ do not drive like Yugo’s. We will be hearing more about how much the bacteria in our digestive track effects our well being as the studies investigating the links between obesity and malnutrition to digestive bacteria are completed in the coming months and years.
I never found a good counter to dex (Valium or Xanex & Marinol worked the best). Curcumin is synergistic with Velcade (so I took it). Neem has had profound efficacy for some with CLL (so I took it). Resveratrol (pronounced in my world ‘reverse it all’) has clinically documented anti MM properties (so I took it). Vitamin D, B12, Calcium & Magnisium were all recommended by my oncologist (so I took em). That about covers all the boring MM details.
The most important part being I’m psyched about normalcy. A term rarely applied by others to me but with profound emotional significance at least within my own head.
Still laughing at those plasma cells!

V-BiRd


No it’s not a virtual avian with an attitude but rather a typically obtuse medical acronym. It stands for a myeloma drug treatment regimen involving Velcade, Biaxin, Revlimid, and dexamethasone. There are 2 items of importance here, firstly it has a near 100% response rate and secondly I become a raging lunatic on 40 mg of dexamethasone! The net effect will drastically increase the entropy of the world, reduce the congeniality of my marriage and kick some myeloma ass.

All this because last week’s PET scan confirmed that although I’m stable there are active chewing myeloma lesions in T11, my left hip and my right pelvis. The hole in my head although large is of no particular consequence because there is little inside worth troubling about, it supports little hair and only an occasional usually little hat.

The T10 repair job done last summer was so successful a T11 kyphoplasty is probable. I have an appointment with the folks in Cleveland regarding the rest of the holes.

I am looking forward to weekly infusions on Mondays followed by 2 sleepless nights a worthless day and a massive quantity of unfinished projects to deal with come Thursday.

Don’t interact with me early in the week without thick armor and a boat load of time. I will have plenty to say of minimal relation to anything but of urgent relevance to me.

This all starts on Monday so you have been warned and advised that this is your last week to extract any knowledge I might have in timely and coherent manor.

Oh yea and the Viagra regimen didn’t make things worse, but it didn’t help in the second cycle. At $18 a dose from Walgreens I decided to stop… and I was not about to click on any of those links that show up daily in my spam folder for $2 version thereof.


Still laughing at those plasma cells!

Ken

My best friend “Strange Attractor” is mostly comfortable and content in palliative care. As I have been told “Just because you know I’m going to smash your face with this baseball bat it doesn’t mean it won’t hurt.” Even though I know he is soon to leave his body it already hurts like nothing I have ever felt. “Ken, I’ll be on the dock soon with a few beers and I promise I’ll finish yours for you if need be. I am looking forward to having many long, thoughtful and humorous conversations with you, especially about myeloma. Sometimes I’m a little hard to get through to so don’t give up on me! Even though I won’t always respond know that I love you.

To add to all the emotion I had a 15-20% improvement in my myeloma markers last month. One of my most humorous and enjoyable months on chemo in the past 4+ years.

Life can be quite a ride at times.

Spike

An intermedulary rod is a bit more technical sounding, but spike is clearly more endearing. I’m referring to the piece of titanium in my left humerus which is keeping the elbow and shoulder connected. Most such connections are solid. Mine just happens to be a swivel joint with a lot of slop. The techy term is malunion. Being a south paw fixing this would be a dream come true.
The plan developed with a couple orthopedic oncologist’ at the Cleveland Clinic is to pull the spike out, fill the hole with cement, jam in a new spike, screw it all together and then paint some bone growth goop on the broken spot. All this to be followed by several months of chemo-free healing.

That brings me to the techy chart on the right and how to blast away a bunch of MM cells. The stable seesaw has been going on for over a year now (My MM has been hovering around 15 times normal values, a 75% reduction, ever since that rapid response over the first 4 cycles on Revlimid and Dex). On Monday after about a half an hour my team decided on weekly Velcade infusions. Just before getting up to leave I inquired as to why on earth someone should “tell your doctor if you have blood cell problems such as multiple myeloma, or leukemia” before taking Viagra? I have never seen an MM warning on any medication – ever.  He said because the manufacturer has not obtained FDA approval for myeloma use. There are a few published clinical observations claiming efficacy of  Sildenafil (Viagra) in myeloma patients. He turns to Lu and asks, “Should he try it?” An overexcited Lu beams, “You bet, four times a day!” He turns to me, “She is trying to get all the golden eggs in one go… by killing the goose.” The patient’s quality of life should be fine though.
Just call me Spike.

Smiling

It was 4 years ago last week that a hematologist told me “You definitely have multiple myeloma.” I wouldn’t wish that phrase on anyone, but I am happier, surrounded by more friends and know life would not be as fulfilling if he had not uttered it. Of course the countless hours spent dealing with all things myeloma is not always met with enjoyment, enthusiasm and passion.

The wonders of Revlimid continue. It has been 17 cycles, 70 weeks, of response. Stable is grand.

After one cycle of Revlimid my dear “strange attractor” friend shared some lab results with me this morning. I quote:

The concentration of the paraprotein in the far gamma region, previously identified as an IgG Kappa has decreased…

Compared to the previous study, urinary total protein has markedly decreased from…

I’m smiling today. :-)

Strange Attractor

Most of my friends don’t find me to be all that strange. They wouldn’t be my friends if they did now would they. Has anyone ever told you, “Like attracts like, You reap what you sow or Be careful what you wish for! or the ominous You are what you eat!” Given a 7 per 100,000 chance of contracting myeloma and a 1 in 6000 chance of meeting someone with myeloma why did my dearest of friends have to join this dreaded club? My head feel like this strange attractor (created by sandyckato) when I ponder the significance.

So why do I ponder, toss, turn and toil? That is the nature of still needing a bit of work to do before total enlightenment. In the mean time I am honored to finally be able to justify all this obsessive compulsive myeloma info gathering I’ve done over the last 4 years. Of course he is not particularly interested in it, but that just means I don’t have long boring conversations with him. I secretly record every number, ask leading questions and obsess about their significance. (Insanely persisting in the same behavior over and over again expecting a different result every time.)  It is hard to believe that it has been 4 years. I’m in a different shape compared to 4 years ago, but then that is in large part because I’m inherently lazy. My left forearm is still not attached to my left shoulder so that means I don’t do shit and I have become round.  A new shape.

I smile tons and life is grand. Happy Holidays!

Elbows off the Table!

Breaking your arm at the hospital is much less of a hassle than doing so getting into a kayak at 6:30AM a hour+ ambulance ride away. Lu and I were killing a bit of time eating salads while our dear friend upstairs chatted with her Doc. It was an awesome make-your-own salad bar creation.

It wasn’t awesome enough for me to not lean on my elbow though. One of the not-quite-dead-yet offended green peppers, egged on by the spring mix, lashed out and snapped my humerus in the exact same spot it broke last year. Of course there wasn’t but a thin egg shell of bone there. The wonderful titanium spike held its ground and fought off the assault. I promptly crushed and swallowed the out of line greens while Lu went and paved my way back onto the docs schedule.

This all happened about an hour after learning from the doc that stable doesn’t mean dormant and scheduling a bone marrow MRI. Fourteen cycles of stable had instilled a bit of complacency. My guard was so far down that a bowl of veggies kicked my ass. It turns out I might be mutating into a nonsecretory myelomechanisian (that’s a new word – meaning a mechanical engineer with myeloma who does not secrete protein for convenient monitoring of his tumor burden).

I’m on a strictly meat, bean, grain and dairy diet now due to a phobia of violent vegetables. Oh the joys of myeloma are beyond the imagination of mere mortals.

Waltzing Through Summer

I dance with a unique sense of rhythm. It brings a big smile to my face when I recall our ballroom dancing instructor telling Lu, “He leads and you follow. It is your job to make him look good even if he can’t keep time.” I can assure you that despite the somewhat sexist undertone I look much better because Lu is really good at her job. We have been waltzing through this dark fungus loving wet cool summer with significant panache.
There was a fortuitous clerical error that caused last month’s blood work to be missing the MM indicators. This month’s blood work was postponed for an extra couple weeks because I didn’t want to screw up my waltz. Skipping a few beats is one of my fortes.
About a month ago a colleague chiseled a couple holes in one of my vertebrae, inflated it back up to size with a balloon and then filled it with this stuff that resembled nail polish. Then I went out for lunch and haven’t looked back since. Our mattress apparently was not the cause of my back pain – the pain was gone the next morning never to return.
School starts tomorrow so visiting the oncologist will just add an extra beat to what promises to be a highly syncopated mambo. (BTW I truly suck at quick Latin dances).
The Myeloma Beacon published a short Patient Perspective about me that references this blog so an update was in order. If this is first time you have visited my blog welcome.