Laughing Plasma Cells

Holiday Cheer

2011-12-14T13:45:00.000-05:00

It has been close to 9 months since I last felt like posting anything. This clinical trial has been relentless as so many are with all the testing and documentation. There is enough cancer in my life - I don't need to blog about it as well. In short I'm still bouncing around on MLN8237. Disease assessment (re-staging) is every 6 weeks (2 cycles). The astonishing 75% response after cycle 6 has held. My numbers fluctuate a lot which I can't correlate with anything in particular. The doubling of a marker after a 75% response is still well below baseline levels.

I can now cruise through the Holidays and that dreaded 6 year MM anniversary and hit the 1 year mark on this trial before my next assessment.

Happy Holidays :-)

Status Quo

2011-02-20T08:57:00.002-05:00

It would be nice to say something like gone, vamoose, finished, cured, but alas I settle for stable. There was some rather modest bone improvement according to the radiologist who read the MRI but other than that - boring.
Aside from the sleepy feeling (and dopey and grumpy demeanor and sneezy fits) I'm happy the doc was not bashful and signed off on another 2 cycles and a restaging party to follow up with. Soon the magic mirror will reveal the fairest drug of all and we can all live happily ever after.

Laughing

Random Number: 8237

2011-02-07T08:48:00.004-05:00

How is it that Millennium landed on number 8237 for the designation of the investigational drug I happen to be taking? How is it that the DNA mutation dice I rolled happened to spell myeloma? How is it that of the long list of just likely side effects, hair loss is the only one I've really noticed? (The low white cell counts though significant are not noticeable.) How would I know if my cognition is amiss? Why is it that perceived randomness is rarely actually random? I will chalk the latter up to ignorance of which I am masterful. The new found affinity with Uncle Fester might be clue. I'm not getting it though.
Lets hope that my mutant B-cells just happen to be expressing Aurora A Kinases and the MLN8237 is obliterating them because of it. A random mutation for which even Uncle Fester would be pleased. The plethora of fluids I'll leave behind tomorrow at the lab should help cure that ignorance. Stay tuned...

Aurora

2011-01-05T15:36:00.004-05:00

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

2010-12-29T01:17:00.003-05:00

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.

The VBiRD has Flown

2010-09-18T09:47:00.001-04:00

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

2010-05-20T16:14:00.000-04:00

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

2010-04-12T10:04:00.001-04:00

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

2010-03-08T15:57:00.001-05:00

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

2010-01-13T14:24:00.002-05:00

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

2009-12-11T17:15:00.000-05:00

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!

2009-10-24T22:22:00.002-04:00

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

2009-08-30T20:15:00.004-04:00

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.

I'll Take "Better"

2009-06-23T19:58:00.005-04:00

Well as I predicted... Summer has officially arrived and so did the lab results from my 10th Revlimid cycle. "Better" without supplements despite a strong correlation with supplements in the prior 5 cycles. So would you spend the $4 bucks a day on those 2 dozen pills? If a few numbers and a single point of measurement were all that was needed to define success or failure life would be a lot simpler. Heck we wouldn't even need clinical trials at all. I do have to admit that I expected the trend to continue, but "Better" is better than worse even if not living up to my biases. 30% better is 50% better than 2 months ago - that almost looks like a trend.

The fireflies are out in force here in western NY. Before the farmer mows the hay field by the house driving into it is like magic. Right at eye level there is a sea of swimming lights in all directions. A bit of light no matter how small can bring a smile to my face.

Cycling Continues

2009-06-03T07:58:00.004-04:00

I'm referring to my ad hoc clinical trial of one in which I cycle the use of curcumin. A bit of background info is probably needed so bear with me.

Back on September 9th of last year I started on 28 day Revlimid+Dex regimen (25 mg days 1-21 + 20 mg days 1, 8 & 15). After a 75% reduction in my protein expression in the first 3 cycles dex was stopped. A further 10% serum protein reduction was achieved in the next 2 cycles as well as improvements in antibody levels and lambda/kappa ratio. The 6th cycle saw a 10% increase. A supplement regimen was started at the beginning of the 7th cycle which consisted of C3 complex curcuminiods (8 gr), organic flax seed oil (1 gr) and EPA/DHA (860/580 mg). A 3% decrease in protein expression was seen.

Was the response just a normal fluctuation in expression or correlated with the supplementation? The synergistic effects of curcumin with bortezomib and thalidomide have been observed by Aggarwhal's group at MD Anderson both in vitro and in a xenograft model in nude mice. (http://tinyurl.com/c2hlfx) So to address the question a cycling of supplementation vs. no supplementation was started. Relative to the previous cycle the trend is:

Cycle 7 (supplementation) 11% decrease

Cycle 8 (no supplementation) 45% increase

Cycle 9 (supplementation) 24% decrease

Cycle 10 (no supplementation) ???

I'll let you know what happens this summer (June 22nd)...

Enjoy the rest of spring and cycle if you can! I'll be waiting for a heat wave reading a good book by the fire at our camp.

Oregon Coast

2009-05-05T23:42:00.008-04:00

Well it's been another month. My M-spike (monoclonal protein expression) a little over doubled from 125 to 289 mg/24 hrs this cycle. I didn't take any supplements... This level of expression is still quite low and could be just part of normal fluctuations. I expect the curcumin, flax & epa/dha oils, vitamins D & K2 and Revlimid to kick butt again this cycle.

We are vacationing on the Oregon coast this week. It is awesome as always. This afternoon we drove up to the top of Mt. Hebo. It was incredibly windy, cold and desolate. Not a soul to be found. So of course we took an inviting logging road instead of the boring paved road down. About a half hour later somewhere on the side of the mountain in the middle of the Siuslaw National Forest on a far less inviting narrow steep deeply rutted part we get a flat tire. Finding, extracting and installing the spare added nicely to the adventure. Then this pickup appears - on a Tuesday, coming towards us, up the mountain. This guy who acted like Mary Poppins announces he is here to feed the birds. Huh? We are on the side of a mountain on a logging road, what gives. "Oh watch, this place will be crawling with birds in a couple minutes." Sure enough he was right. So much for the high winds and chill hunkering all the birds down as it had all day. It brings a smile to my soul recalling how this all just happened.

The Gray Jay, Perisoreus canadensis
May 6th, 2009, Mt. Hebo, Oregon

Munching Continues

2009-03-30T16:44:00.003-04:00

The predators called in last month to munch away at those pesky little MM cells are smiling along with me from ear to ear. I learned a few hours ago that my Laughing Plasma Cell's protein expression is a quarter of last months and about 6% of its peak 7 months ago.

If you're bored here are some detials. We did a little curcumin experiment. During cycle 6 (February) I did not take any curcumin but continued other minor supplements. My protein expression was up slightly but considered stable. This past month, cycle 7, I resumed taking 8 grams of C3 Complex curcumin in the morning approximately 12 hours after taking Revlimid. My myeloma (monoclonal or M-Spike) protein expression went down over 75%. I love this note on my labs: "Serum Protein Expression: very small M-Spike visible on gel but too small to quantitate." I'll take too small to quantitate any day! Although the ratio of my light chain expression (Kappa/Lambda) is ten times lower than 'normal' it is the first time it has had a value in years. It usually just says < 0.01 and the Kappa expression is listed as < 0.5 mg/L. It is now in the normal range, 7 mg/L.

As for my sense of welling being, believe it or not it is more closely related to my hemoglobin and hematocrit than anything else. They are just a tad low now. Of course being told that my elbow isn't attached to my shoulder is a bit bothersome. I find it rather unbelievable, but it does hurt like hell if I rotate my forearm just right. Life is Good!

Munching MM

2009-03-05T06:52:00.007-05:00

The good ol' Rev is still chasing down and munching on those pesky little MM cells. There aren't many of them left, but they sure are illusive little beasts. Their protein expression is still hovering around 10% of their peak value. A sort of stalemate. A battle of wills. I'm going to call in our newly adapted predator - Hope. She has plumped up a bit and is clearly ready for battle. Marley grumbles, groans and otherwise expresses her general dissatisfaction with being out maneuvered by a spry street smart younger sister. Besides she still eats like a little piglet and begs like she hasn't been fed in days (despite the full bowl of organic wholesome chow 10 feet away). Maybe that tablespoon of milk I share in the morning when whitening my coffee has sealed my fate as the sharer of all food present. Marlee has been content to eat the same food year after year and never do the leg weeving, cabinet stretching meow of desperation and hunger. There is no possible humanitarian recourse besides obliging.

On a more practical note Revlimid has dried me out. I don't wear solid colored shirts anymore. The snow drifts are fine if you like to ski. No quantity of gooey messy pillow ruining slim seems to have any effect. If I grease down and leave the house I have to be careful.

Bryl-creem, a little dab'll do ya,
Use more, only if you dare,
But watch out,
The gals will all pursue ya,--
They'll love to put their fingers through your hair.

Bryl-creem, a little dab'll do ya,
Bryl-creem, you'll look so debonair.
Bryl-creem, the gals will all pursue ya,
They'll love to RUN their fingers through your hair.

Whole body slathering of love does improve my sense of wellbeing though. For that I am oh so grateful. The fish and flaxseed oil might be preventing total mummification. A fate I'd prefer to put off for a while longer.

Hope

2009-01-30T11:39:00.007-05:00

We adopted a stray that took up residence under our porch a while ago. She is a beautiful extremely thin caramel calico in perfect health (according to the vet). She had a chip that complicated matters as the vet had to contact the registered owners while we waited oh so patiently with Hope still on the porch. (We didn't want to expose Marley to a possibly sick cat and didn't want to incur a vet bill for someone else's). I'm actually not a cat lover - just a lover of my cats. Cats tend to scare me a bit until I get to know them. Being a rural farm land kid most cats I encountered were not interested in being my friend and would let me know it, rather unexpectedly, in that lightning fast cat kind of way.

Hope now smells like she just got home from the salon, but is still clearing some of the under the porch dust from her sinuses. A nice juxtaposition. No AIDs, Leukemia, fleas or parasites, just under weight and ever so slightly frost bitten.

Our family has a "Bob" cat theme with a Dylan, Marley and now Hope. Bob Hope lived to 100 so some of that fortitude must have been passed on to our Hope (or at least that is hopefully true).

Fantastic Voyage

2009-01-18T09:11:00.003-05:00

Yes that would be us... you're on this voyage also or you wouldn't be reading this. Hows about a ship even smaller than the one Raquel Welch got shrunk into but plenty exciting all the same, probably revolutionary and certainly awe inspiring. I stumbled across a ScienceDaily (2009-01-16) article: Fantastic Voyage: Medical 'Mini-submarine' Invented To Blast Diseased Cells In The Body

Scientists developed a medical "mini-submarine" to blast diseased cells in the body. The blueprints for the submarine and a map of its proposed maiden voyage were developed earlier this year. Now the scientists will build and test-run the actual "machine" in human bodies.

The lead scientist, Dr. Peer, has some goals that resonate.

We are particularly interested in
1. Identifying key genes responsible for pluripotent hematopoietic stem cells self-renewal properties.

2. Studying the role of cell cycle regulators in proliferation, migration, and cytokine production in lymphocytes, macrophages and dendritic cells during inflammatory bowel diseases and rheumatoid arthritis .

3. Developing and studying novel approaches to target cancer stem cells.

4. Harnessing siRNAs and miRNAs as novel tools for drug discovery and for therapeutic applications.

Let hope his voyage is fantastic, incredible and highly relevant to what ails me.

Freezing Fog

2008-12-31T09:46:00.004-05:00

According to the Weather Underground this morning we are experiencing: Freezing Fog with Active Advisories: Winter Storm Warning, Flood Warning, Special Weather Statement (US Severe Weather), Active Notice: Record Report, Public Information Statement

Just what is freezing fog? This looks like snow to me, but I guess if it is thick enough then you can call it freezing fog. Why not flaking fog? How about falling frozen fog with significant accumulation of fallen frozen fog particulate? Now not a mere 15 minutes later we have freezing sunshine.

I learned on Monday from the lead author of the early December presentation at ASH on GRN163L that yes indeed the Telomerase activity in the bulk tumor fraction of my bone marrow decreased by 78%. Yet another reason which I forgot to mention earlier to party tonight.

“If you're going to be able to look back on something and laugh about it, you might as well laugh about it now.” Marie Osmond

Its Party Time

2008-12-31T05:55:00.006-05:00

Marlee is no longer captivated by the scene changes in the Nutcracker Suite. I on the other hand am still in awe of my response to Rev/Dex. I am now in the 90% response range. Every single CBC, CMP, LDH, CRP... is in the normal range except a slight anemia, antibody suppression and an elevated lambda free light chain and related lambda/kappa ratio. (My M-spike is negligible)

The orthopedic surgeon said he didn't need to see me again. "Go do some strength training on that arm."

The oncologist said: "No More Dex!!"

It is definitely Party Time Tonight!

Meet the Man's

2008-12-10T09:45:00.005-05:00

That would be Ginger and Brad Man (the "e" is silent in Bread). We made the front page photo scroll on Buffalo.com which is were I got the attached image

I guess that is not as dorky as the Man's making out in the elevator. Today is another dex day so either I ramble with no point or just stop and move on to some other urgent project which I will abandon shortly after finding an even more urgent project. Oh ya I have a final exam that needs some work.

Gingerbread

2008-12-08T09:21:00.004-05:00

Sorry, but I don't have any dorky pictures of Lu and I as the happy couple, The Man's. That would be Ginger and Bread. What a wonderful event though. So wonderful in fact we are now the proud owners of a new house. It so reminded us of our summer place that we could not pass it up. A couple of students (I assume culinary artists!) started on it about a month ago. She filled the inside with goodies likes cakes, croissants, candles and an old fashioned cook stove. He constructed a cabin worthy of the harshest Buffalo winter storm. BTW if you click on the pictures they link to significantly larger versions there of.

It is bitter cold today. In the teens (-10 C) actually. There is a beautiful blanket of light fluffy snow. A perfect day to stay inside by the wood stove and work on my final exam.

BTW Geron presented interim results of the GRN163L trial at the American Society of Hematology meeting in San Francisco today. I'd like to conjecture that they talked about me as I received the dosing level of 4.8 mg/kg. It is pure conjecture though. There may have been several other patients at that level.

Ups and Downs

2008-12-04T09:22:00.005-05:00

Slowly but surely my MM protein expression is dying off. That's a good thing! Three cycles and three quarters gone. (another 30% reduction) I like that. The bionic arm is slowly learning to act human. The semester is quickly coming to an end and my Christmas cheer is all the more enhanced by the good news. We are minimalist when it comes to Christmas consumption, but I do love the new smells, music and festive lights. I get to dress up as a gingerbread man and act like a cheerful dork Friday. That aught to help my spirit. I guess a picture is in order.

My dear friend Sue who has graced me with her love and compassion, who has inspired me with her courage and perseverance passed away early yesterday morning at Hospice Buffalo. May your journey be filled with passion and love and guided by the grace of God. Here she is with that infectious smile in the Gilda's library. Peace be with you.

Protein expression going down perks me up as does Sue's smile, her memory and the fondness of all that support she brought the Wednesday evening Gilda's Wellness Group.

Vitamin K2

2008-11-23T13:27:00.006-05:00

I couldn't help but be inspired by Margaret's post "Purring against myeloma" to snuggle up with Marlee and ponder the health of my bones. I have had significant lytic lesion progression in the past year. One of which resulted in a broken humerus. All this despite Velcade, GRN163L, Zometa and Aredia. Vitamin K2 has recently attacted the attention of nutritionist with regard to bone and heart health, although clear randomized clinical trials have not yet been done. Vitamin K2 is not common in western diets and is therefore difficult to access its affect on bone health via population based studies. There is a correletion in Japanese studies between bone health and those that consume Vitamin K2 rich natto (a fermented soy product). "The reported outcomes of clinical trials, primarily from Japan, that have assessed the effect of MK-4 treatment on fracture risk and bone loss at the spine are
positive overall." With my "first do no harm" motto and the knowledge that vitamin k2 toxicity is almost nonexistent adding K2 (along with the already present and monitored vitamin D) is a no brainer.

Yet Another Response

2008-11-13T15:54:00.002-05:00

Well after a 50% reduction in the first cycle of Rev/dex I am happy to report another significant response in the second cycle. My myeloma marker of choice (lambda free light chain expression) dropped another 30%. Now if the GRN163L had any effect on the myeloma stem cells then I may be looking at a nice long term remission. :-)

I guess you'll have to be patient on that front.

I started making sound with a mandolin a while ago. The tuning and fingering is the same as a violin which I used to be able to make music with. It is definately not like a violin and I don't make music - yet. I am having a great time though. It stretches my neurons.

28 Day Partial Remission

2008-11-06T14:54:00.005-05:00

I saw the oncologist yesterday and had a skeletal survey (bunch of x-rays) and an Aredia infusion (osteoporosis type bone strengthening drug) in the evening. My myeloma activity markers (protein expression) dropped by 50% in the first 28 days on Revlimid and Dex. My blood counts are still hovering around 'normal' and consequently my fatigue is pretty mellow. Now I'm working on getting the arm back in shape - it is quite gaunt and painful if I do just the right flex. The pain disappears instantly though, but I instinctively use my arm less which helps with the general left arm malnourished look. I'll find out what happened in the second 28 day cycle of Revlimid and Dex early next week.

At the beginning of October Geoff's Light the Night team raised $550 for the Western NY Leukemia and Lymphoma (and Myeloma) Society. They are a great in the trenches type of organization. They were the first people to call me after my diagnosis and connected me up with a few other survivors. The total team raised almost 5 grand in my name. Wow!

Two weeks ago Thursday I gave a 5 minute closing emotional hook at the annual Gilda's Club WNY fund raising breakfast. That one hour bash raised over 200 grand. I'd like to think my 5 minute story hooked and reeled in a little bit of extra cash for the best club I've ever been a member of.

Saturday night Lu and I along with 28 of our friends went to an IMF fund raising event "Evening for a Cure" and raised a bit over 2 grand for my oncologist's research efforts. There were another 190 folks there so I'm hoping the proceeds will be enough to keep one more staff member going for another year. I feel so blessed to have an oncologist who is doing cutting edge world renown myeloma research.

I am profoundly touched and honored by the generosity and compassion of my friends and mostly by acknowledging your and their love and support of me. It bring tears to my eyes every time I think about it.

I hope all is well with everyone. I'm certainly excited today (a Dex day which started at 3 AM). I'm playing really crappy mandolin now and getting more genuine every day.

Light the Night Walk

2008-10-01T08:05:00.003-04:00

This Friday is the "Light the Night Walk" in Delaware Park. My boy's team, lead by Jessica Del Mauro, will walk two miles to honor those effected by Leukemia, Lymphoma and Myeloma. Jessie was just recently diagnosed with Lymphoma herself. She has graciously pledged all money raised by her team in my honor. I am humbled and grateful of all the team members efforts. Such outpourings of support are a wonderful thing to see and feel!

The Leukemia & Lymphoma Society's (LLS) Light The Night Walk is an annual event to raise funds for cures. It’s the nation’s night to pay tribute and bring hope to thousands of patients and their families.

Funds raised through Light The Night Walk support the work of hundreds of the world’s best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma and myeloma.

Jessica's team has a matching donor which will double their efforts. Western New York is among the highest per capita charitable donation levels in the country. It is a wonderful place to be, especially this time of year.

Humorous Message Boards

2008-09-15T08:05:00.006-04:00

I get such a kick out of folks on the Geron Yahoo Message Board speculating about their stock’s prospects from a humor oriented blog. If you go to the message board and search for LPC there is more humor to be found there than in this drool. I got the biggest kick out of speculations like: “LPC has left the trial and is on the verge of death… LPC is DYING and you can see it on his blog…” In all fairness it is certainly true that I will die some day. I wonder how many of these folks I’ll outlive though. I also don’t think there is any question that my disease progressed while I was on the trial. Bone marrow MRIs done pre & post trial indicated a change in “involvement of the central bone marrow with multiple myeloma” from “30-40%” to “more than 50%” respectively. From the response markers (M-spike, Serum FLC expression, 24 hr Urine FLC/PEP & skeletal survey) monitored on the trial I had stable disease (less than 25% variation) until the last cycle. I was playing tennis 3 days a week until I busted my arm, which in hind sight was not so shocking. I have known about the condition of my humerus for almost 3 years. It still hurt and clearly caught me off guard.

I have to admit that Securities Fraud never crossed my mind until posts like “Anybody who references LPC is a Pump and Dump Scammer” got me thinking about pumping and dumping. If an idiot like me could pump and dump a stock then there is clearly either a lot of other idiots out there or a bunch of stock holders that don’t do very sound research on their investments.

No I have never got a call from a lawyer telling me to shut up, thank you very much. I'll bet the Geron lawyers are not idiots.

Still Smiling,

LPC

I'm Back

2008-09-07T19:55:00.008-04:00

The door is closed on the humerus radiation.

The next day I moved on to Carson Mineral Hot Springs Spa for several days of glorious pampering with lots of mineral baths and body raps and a few tailored massages to help with the tension of being "one armed."

It was 107 F (42 C) so we went to a snow fed swimming hole, Dog Creek Falls. I can't imagine going near that water if it wasn't so darn hot out.

On the way to the Oregon coast we stopped at Multnomah Falls.

The Oregon Coast was glorious as always. We spent 5 days right on the Pacific in a huge house with Lu's immediate family (Ma and all her sisters and their families). It was a wonderful family reunion. We got to escape to walk the tide pools, watch the whales, and do a bit of bird watching.

Right in the middle of it all Lu and I renewed our vows in a heartfelt ceremony at Unity by the Sea in Glendeden Beach.

We flew back just in time for the fall semester to start and a mad rush to submit a NSF proposal. For the geeks in the crowd we do fluid flow investigations using holographic imaging techniques - need I say more?

On the MM front my blood bounced back from an 8.1 hemoglobin to an 11.8 while I was vacationing! Yea ha. My humerus has healed remarkably well according to the x-rays (and the surgeon I met with this afternoon).

I started Rev/dex today. Maybe all this hemoglobin, dex and good news is why I have so much more energy than usual!?

I'm anxiously hoping the GRN will really begin showing it's colors now. A nice long lasting (40 year) remission :-)

Just the Boring Facts

2008-08-13T21:08:00.006-04:00

I have received numerous inquiries about my experience with GRN163L. Unfortunately my MM did progress toward the end of the 20 weeks I was on the trial. I withdrew from the trial and was looking forward to a drug free escape for the rest of the summer. It is obvious that a significant part of the disease progress occurred in my left humerus. I now have a nice titanium spike in my arm. To eliminate some the healing competition I immediately started radiation treatment to kill off the MM tumor near the break. Just the left humerus and rotator cuff area are getting zapped.

Next is a Rev/low dose dex regimen scheduled to start in early September. The durability of which may be affected by the GRN163L therapy. Remember GRN is not an anti-tumor agent. It is an anti-MM stem cell agent. It is assumed the MM stem cell is a very small portion of the tumor burden. Only time will tell.

Remember Spiderman has radioactive blood...

Spidey Conversion Progress

2008-08-10T09:58:00.004-04:00

As many of you may already know Spiderman has radioactive blood AND there is a real dearth of superheros these days. In an effort to do my part for the world and mankind I am well on my way through the 12 treatment Spidey conversion process. I have purchased several sleeveless muscle shirts in part because they fit over my fracture brace and more importantly I gotta be ready when I actually obtain some muscles. I've never had muscles and continue to look like a dork in a muscle shirt, but you just wait! The treatment takes about 5-10 minutes most of which is setup and positioning. Check out that cool grid and laser alignment. I have been reassured that I don't eat, breath or perform any other related vital functions with my left humerus so there should be no side effects (other than those mentioned above).

I am over the hump and coasting toward a full recovery. The killer muscle tension I get from long periods of immobilization are irritating and screw around with that deep restful sleep I so long to experience. Complaining about such triviality after I step back and look at a slightly bigger picture makes me feel like a whiner. I have to admit whining is rewarding at times but it is sort of like shopping - the high is short lived.

P-n-L, Spidey

The Funny Bone

2008-07-26T18:41:00.002-04:00

I'm no longer a hospital virgin. Starting with 14 hrs in an inner city ER to learning that Versed (Midazolam) turns me into a non-stop talking machine (aka slut). Lu walked in the recovery suite and asked my nurse "Who's he talking to?" She replied, "Nobody as far as I can tell, he hasn't shut up since he got in here."

I got 5 units of blood, 1 in preparation, 2 during surgery to replace the 2 that ended up on the floor and another 2 because I left the OR with a hemoglobin of 7.1. Apparently I shattered the expected 2 tablespoon norm. As a consequence I do not have any screws at the elbow end of the titanium spike in my humerus. There just wasn't time and a bit of concern related to hematoma(s). There is a metaphysical-feeling set of consequences which led to the 2 units of blood that were hanging during surgery. Let's just say Lu is more amazing than I can give her credit for without sounding like a wacko.

So I left recovery with a new friend's (my recovery nurse, Patti) email taped to my chest. (there was no way I was going to remember anything like an email address)

My Mom found an empty room larger than the one I was to be squeezed into and Lu again worked her magic and got a room change to a family room with a hide-a-bed for her, my mom and all the kids to be comfortable in. That was a true top floor haven. The pain kept me in the hospital an extra day, which wasn't so bad considering the surroundings.

I'm taking a ton of Lortab for the pain, but less and less frequently. I get to pow-wow with my oncologist concerning upcoming radiation treatments this Tuesday. Unfortunately, because of the missing screws, my elbow is immobilized until August 4th. (Hopefully no longer then 10 days which should make PT a bit easier.) I will then move into a higher mobility brace.

All in all I feel blessed with the incredible out pouring of love and generosity. Thank you so very much for all your thoughts and prayers. Please feel free to post comments because I love reading them.

Egg Shells are Fragile

2008-07-22T07:39:00.004-04:00

I had jumped ship on the GRN trial one week ago and had already gotten my mind around a major MM drug free summer holiday. My blood counts were starting to plummet and the 20 weekly infusions had started to make me freakier than I already am. I got a unit of Lu's blood, thank you very much, and then noticed I needed more shoes and my hair looked a bit gray.

With a hemoglobin approaching 10 I packed up a tote full of low key projects for camp all psyched for a relaxing weekend. A bit after 6 AM I go down to the dock with my camera to snap some sun rise photos. Unfortunately with one hand on each side if my kayak I learned my left humerus was just not strong enough to support lowering my fat ass into the seat... Of course I thought the dock broke - it sounded like it. The dock is fine.

The rest is a story of shock, pain and ER waiting. Today I am getting another unit of blood in prep for a new titanium humerus tomorrow at 3 PM. Then I get to irradiate it to cook the MM cells. I'll do my best at keeping everyone up to date. Remember I suck at one finger typing and can't be held responsible what I say, think or do while zonked on pain meds.

If you have any suggestions fire away.

P-n-L

The Durability of Dandelions

2008-06-05T10:51:00.008-04:00

It turns out the idea of cancer being fed from a stem cell like source is over 100 years old. Several years ago, like many of you, I heard the cancer stem cell phenomenon described using a dandelion analogy. Anyone who doesn't use herbicides knows you can mow down dandelions every week and they just pop right back up. If the soil is bad or the root stock is weak it might take a while, but eventually it regrows. There has been enough research done over the past several years to confirm with reasonable certainty that myeloma behaves in a similar fashion. There is a root stock (cancer stem cell) that eventually regrows a new weed (myeloma tumor). There are only a few agents that target the root stock. There are many that attack the weed above ground. Sort of like the difference between the number of lawn mowers models versus the number of broad leaf only herbicides. GRN163L happens to targets the root stock. As a single agent the therapy doesn't do much to the weed or tumor burden so all the conventional monitoring tools are not very useful measures of the drugs effectiveness.

Well guess what? By all normal standards of measure I have stable disease after 12 weeks of GRN163L. There has been no statistically significant trend in M-spike, IgG lambda expression, CRP, or Beta-2. My blood counts have continued to slowly go down which was expected and will probably be the limiting side effect. The anemia related fatigue is the only issue I really notice besides the psychological babble associated with weekly infusions. I certainly obsess about every tweak, tingle and sensation but that is a pretty normal cancer Obsessive Compulsive Disorder (OCD).

May was a great month. I took off for a few weeks to the Oregon coast. The OCD gladly receded giving way to glorious vacation. I got to commune with wonderful friends, family and some pretty amazing trees. Not to mention the Pacific Ocean and countless birds and the absolutely amazing blooms of late spring. I got a week off GRN and boy was it wonderful. Now I'm looking forward to a wonderful summer frolicking in Western New York.

The Green side of GRN

2008-05-01T18:05:00.002-04:00

Just how green can a drug be? Well I suppose there is the broader environmental aspects which unfortunately I have no clue about. That question does make me wonder just how much carbon is generated in bringing me GRN163L. I bet it isn't negligible.

On a more personal note I can speak to the slight green tinge my GI system has developed. Unfortunately when you get a sour stomach there is a link made between the environment and the feeling with one of the strongest connections being that of smell. However unfortunate that link might be, it probably has kept us (humans) alive by steering us away from things that smell of stuff that made us sick in the past. I still steer clear anything that smells like gin 30 some years after it made me deathly ill :-). Now I have this revulsion associated with the smells in the infusion clinic. Not such a pleasant feeling to look forward to every week.

The new clinical trials wing at Roswell smells, looks and feels totally different though. It was wonderful. A nice cushy chair big enough for Lu and I to snuggle up in and watch a movie on my laptop in. I got up early the next day and went and played tennis. All my shots were well inside the green boundary. (In my fantasy world at least!)

My LDH (a test which monitors tissue damage in the body and its progress) has been creeping up slowly. For now I'm going with the green theory - the GRN is making fertilizer with my myeloma cells. It also appears to be making a bit of fertilizer with all the cells in my blood as well. That's not necessary.

That vibrant spring green is everywhere these days. Early March hang on until a couple weeks ago and gave way to May a bit early. I have never seen snow drops, crocus', daffodils, tulips and lilacs all in bloom at the same time. It's really green here - all the sudden.

This Tuesday will be my 12th week of GRN. Along with that comes a bunch of response marker tests. I'll let you know what I learn later in the week. Till then think green and walk somewhere just for the heck of it.

Purslane Surprise

2008-04-08T20:16:00.004-04:00

We got a great surprise in our mailbox yesterday. A packet of purslane (and other) seeds from Nichols Garden Nursery (our absolute favorite nursery, run by the most wonderful couple, Rose Marie and Keane). Here it is, the peak of busy. Frantic preparations counting down to their annual Plant Day (May 17th) and Rose Marie finds the time to read my blog, send me a catalog, a note and several packets of seeds. The world is a better place because of dear folks like these.

I thought I would slip in some news about Mr. Stable, yours truly. My serum markers went up (but not to baseline levels!) and my urine protein expression went down 45% from the first cycle (now 25% below baseline). So how should I spin these numbers? How about if I fantasize about a pita stuffed with broccoli sprouts and purslane (courtesy of Nichols!) while sipping some green tea and just laugh about it.

Next week I get to go to the new Phase I/II wing at Roswell. The place is both gorgeous and impressive. Private rooms with all the bells and whistles, a dedicated pharmacy, specially trained research nurses and of course comfy chairs & flat screen TVs... I don't think I'll all the sudden start looking forward to my visits, but geese it sure feels nice.

He who laughs first

2008-04-07T18:06:00.002-04:00

So if I tell you I'm going to tell you a funny joke your immune response will be beneficial - right?

According to a presentation today the 121st Annual Meeting of the American Physiological Society in San Diego, California a good dose of comedy might be just what the doctor ordered.

Back in 2006, Berk and his colleagues found that merely anticipating laughter boosted the production of mood-elevating hormones called β-endorphins and the immunity-enhancing human growth hormone by 27% and 87%, respectively.
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Berk and his team report today at the 121st Annual Meeting of the American Physiological Society in San Diego, California, that levels of all three stress chemicals decreased before, during and after the men viewed their videos. Thirty minutes after the videos were watched, cortisol was down 67%, adrenaline was down 35%, and DOPAC was down 69%. But what really shocked the team was that cortisol, adrenaline and DOPAC decreased by 39%, 70%, and 38% respectively before anything funny was seen. “It would seem that merely having a merry heart in anticipation of the happy experience lowered stress levels... they dropped before videos were even watched” says Berk.

So you can stop reading boring blog entries and go do something worth laughing about. Have fun!

According to another abstract you should consider drinking some green tea while you do it:

Ingredient Found In Green Tea Significantly Inhibits Breast Cancer Growth In Female Mice – Green tea is high in the antioxidant EGCG (epigallocatechin-3- gallate) which helps prevent the body’s cells from becoming damaged and prematurely aged. Studies have suggested that the combination of green tea and EGCG may also be beneficial by providing protection against certain types of cancers, including breast cancer. A new study conducted by researchers at the University of Mississippi finds that consuming EGCG significantly inhibits breast tumor growth in female mice. These results bring us one step closer to better understanding the disease and potentially new and naturally occurring therapies.

First Cycle Response

2008-03-24T18:34:00.002-04:00

Well I got my response indicators for my first GRN163L cycle (3 weeks) this afternoon. The serum indicators (which I believe are more reliable) all showed positive results. My urine free light chain protein expression was up slightly. I must have pissed just a bit too much :-).

For the more technically enthusiastic there was an 18% drop in my serum lambda FLC expression to 1448 mg/dL. My kappa FLC expression was actually quantifiable although still pathetically low at 0.72 mg/dL. My IgA and IgM antibodies went up slightly :-) and my IgG went down slightly :-(. I have an insignificant serum M-spike. I'll learn about the rest of the indicators after the second cycle in a couple weeks. I'm gonna run to Andalasia with that news and sleep a bit better for a while.

On another note... I was pleased to find everything on The 10 Best Foods You Aren't Eating list from the March Wild Divine Newsletter in my kitchen (and diet) except Purslane. Something to try by the sound of it:

Although the FDA classifies purslane as a broad-leaved weed, it's a popular vegetable and herb in many other countries, including China, Mexico, and Greece.

Why it's healthy: Purslane has the highest amount of heart-healthy omega-3 fats of any edible plant, according to researchers at the University of Texas at San Antonio. The scientists also report that this herb has 10 to 20 times more melatonin -- an antioxidant that may inhibit cancer growth -- than any other fruit or vegetable tested.

How to eat it: In a salad. Think of purslane as a great alternative or addition to lettuce: The leaves and stems are crisp, chewy, and succulent, and they have a mild lemony taste. Look for it at your local farmer's market, or Chinese or Mexican market. It's also available at some Whole Foods stores, as an individual leafy green or in premade salad mixes.

Predictably Irrational

2008-03-19T11:42:00.002-04:00

I can integrate and differentiate but I can't count... How predictable it that! No update yesterday. One cycle is 3 weeks. Yesterday was week 4 so all the markers of interest were tested prior to yesterdays treatment not at the end of last week's. Dah! So I'll wait until next Tuesday to look at them.

I happen to be an Audible (audio book) listener and just finished "Predictable Irrational" by Dan Ariely. It was wonderfully entertaining and informative. I highly recommend it for anyone interested in the subtleties of our decision making process and likes science as it is filled with studies to reinforce points of interest. It touches on areas like the placebo effect with thought provoking insight. For example:

Do we get what we pay for?
5th March 2008, 12:51 pm

The nights in the burn department were always difficult, and many of the patients would regularly ask (beg) for more painkillers to help them fall sleep. One afternoon I overheard the doctors tell the nurses not to give a certain patient any more morphine. A few hours later, when the same patient started begging for painkillers I saw the nurse go to her room with an injection and a few seconds later the patient quietly went to sleep. When the nurse stopped by my room, I asked her about it and with a smile she told me that she had given the patient IV fluid.This was the first time I experienced (secondhand) the power of placebo. I am not sure if they ever treated me with the same method, but it is certainly possible.Years later I became even more impressed with placebos when I learned that a placebo for pain has a very clear physiology. When we expect to get pain relief, our brain secretes a substance that is very much like morphine and this substance makes the pain go away. This means that even if the injection contains no painkiller we can still get pain relief courtesy of our own brain.Yesterday we published a study in The Journal of the American Medical Association about placebos. In this study we showed that when people get more expensive painkillers (placebos in our case) they expect a lot and get a lot of pain relief, but when the price of these pills is discounted, the expectations are lowered and so is their efficacy. As it turns out, with painkillers, we sometimes get what we pay for.For a story in the NYT see this link

MM Complementary Matrix

2008-03-14T12:56:00.005-04:00

Although I haven't had much to share I have been actively lurking. Watching my friends that I have never met walk (or in some cases run, i.e. Don!) the MM triathlon. A bit of swimming and peddling thrown in for good measure. We have an extremely dedicated community full of compassion and intelligence. Getting ones mind around just a fraction of the information available is staggering. The myeloma matrix available from the IMF which tabulates current clinical and pre-clinical drugs needs to be extended to the supportive therapy realm of supplements, diet, exercise, mindfulness and the likes. One quickly notices that anything in clinical or pre-clinical phase that is available without a prescription is jumped on by the community. For example green tea extract, curcumin, Ganoderma (Reishi or Lingzhi mushrooms) and capsaicin. It is highly unlikely that any agent especially the ancient already tried ones will be curative. On the other hand in combination or as supportive or maintenance therapy substances with as few side effects as curcumin are a welcome alternative.

As for GRN163L, it throws me for a 24 hour yuck. A slight fever and associated headache and body cramps. This week Zometa was added just before the GRN and it doubled the yuck. In fact my fever went up so high (101.5/38.6) they wanted to see me and do a bunch of cultures to rule out infection. I get a slight PT-INR increase for several hours, but it returns to normal within a day. I'll get my first 3 week response update on Tuesday. I'll be sure to let you all know what I find out.

In the mean time maybe some of the more industrious, energetic and resourceful MMers will do some Complementary Multiple Myeloma Matrix brain storming. :-)

A Prayer and a Dream

2008-03-01T12:48:00.002-05:00

This morning as I stirred Lu from a late morning slumber with gentle nuzzles and a few pokes and prods I asked "Is there anything I can do to make you happy?" She replied "Ya, tell me your cured and give me back those dreams."

"Sure no problem. The GRN163L took care of the myeloma. I just have to go back for a few more weeks to prove it. You'll notice how great I feel and pleased I am. Shall we do some dreaming?"

That led to many laughs and lots of scheming and fantasizing about dreams and how to realize them.

The gory details of the first week involve mostly emotional trauma. Going back to Roswell every day except Thursday was more ominous than I expected. Lots of pokes, pissing and a bone marrow aspirate. On infusion day they took about 360 cc (1.5 cups) of blood over about 4 1/2 hours. No, none, zilch, zip, nada side effects!

Weird Gadgets

2008-02-23T18:37:00.002-05:00

Lu stumbled across a jab at the worst gadgets to clutter your life with:

Camping Ice Cream Maker

Do you use an ice cream maker at home? Then why would you need one in the woods? If you're going to make ice cream while camping, you're going to have to lug a 5 lb. bag of ice, cream and sugar into the forest. Where will you get those things? The same store that sells Ben and Jerry's. $24.95 from REI.com.

I actually like REI, more so 30 years ago when it was a real co-op instead of another yuppie gear store. The absurdity of lugging the raw materials into the woods gave us a good laugh. We did a lot of pathetic ill prepared aborted camping in our youth.

What I need is the Tank Chair to get into the woods.

Tank Chair

Finally, a wheelchair fit for the Popular Mechanics reader. Those wishing to turn themselves into human-powered Mars Rovers should be able to pick up this track-powered behemoth later this month ... for a hefty $15,000.

Relationships, Experiences and Time

2008-02-17T14:18:00.003-05:00

Just what is it that make one feel fulfilled? I noticed that as I have aged that has changed, but there are a few steadfast somewhat philosophical descriptors that keep popping up. Friends are almost always involved. We tend to be experiencing life with an enhanced richness, even if circumstances are rather mundane. Solitary creativity pops up, but rarely in total isolation. Sharing that pathetic scratchy twinkle twinkle little star with my friends added immensely to the experience of learning to play the violin (all over again after 30 years). There has been a morphing through acquisition, accomplishment, and spirituality into relationships and experiences.

Given time, which implies a certain level of financial security to not have to "work" so much just to eat and sleep that you can't have relationships and experiences, you are left with potential. What is it that tips potential toward manifestation? Why do I so often stumble on happiness? Why is it after half a century fulfillment feels elusive? Are folks in the happiest countries (1. Denmark, 2. Switzerland, 3. Austria, 4. Iceland, 5. The Bahamas, 6. Finland, 7. Sweden, 8. Bhutan, 9. Brunei, 10. Canada [ref, see also]) living a more fulfilling life? They do tend to be healthier, more educated and wealthier than less happy peoples. but they are less preoccupied with the pursuit of happiness. Maybe the pursuit itself instills a state of lack or wanting which robs one of the state of being or knowing happiness. I have never visited several of the top 10. I am looking forward sharing a few adventure rich with experiences with my best friend, Lu!!

Here are a few internet experiences people shared with me this week. This will spark a smile and warm your curiosity in the world we share Gorillas in a Tryst. This will make you laugh (if you grew up in the US during the 70's: Great Olan Mills photos If you happen to live in Florence (hint hint Margaret - get it with Chili powder!) you might want to experience an incredible cup of Vestri hot chocolate. (Borgo Albizi, 11r, Tel: 055-234-0374) Lu and I shared a mock up on Tuesday at Pano's on Elmwood Ave. [recipe] Go listen to some music with a friend while on route to yet another great experience, maybe some nice hot chocolate on a blustery winter day.

MM dx

2008-02-05T17:27:00.000-05:00

Lu told a story last May at a Gilda's luncheon about that dreaded pea soup fog you find yourself in when hit with a diagnosis like multiple myeloma. My analogy involved getting into the head of happy go lucky squirrel going about his care free life. All is simple, easy and pretty straight forward. Find the nuts, eat the nuts, save some nuts, eat some more nuts, and find another squirrel to make little squirrels with. Bliss. Then one day there is this bizarre out of this world contraption coming at you faster, bigger, louder and scarier than anything has ever been before.

Welcome to your MM diagnosis day. That contraption shows up from time to time. Like during the Superbowl. :-) Now I feel more empathy for the folks around me who still get all freaked out (not that I don't have bad days!)

Feeling Rich and Old?

2008-01-27T17:58:00.000-05:00

If you happen to be feeling wealthy and old I have something for you to try. The company, Geron Corp., that developed the Telomerase inhibitor GRN163L, (the trial I'm going on), licensed its small molecule Telomerase Activators for non-therapeutic products in the fields of dietary food supplements, nutraceuticals and topically applied cosmetics and cosmeceuticals to Telomerase Activation Sciences, Inc. (TA Sciences). For a measly $2500 you can go to NYC, see a doctor and get a pretty sophisticated lab work up to see if you would like to go on the $22,500/year TA-65 Patton Protocol. That doesn't include the other doctors visits or lab work... "Now aging humans can re-set their cellular clock by activating telomerase, the enzyme responsible for long, healthy telomeres and youthful functioning cells. We are pleased to introduce TA-65, an exclusive telomerase activator that demonstrates measurable and positive anti-aging benefits."

So do I want to age gracefully or get rid of this myeloma? Maybe I can do both? What a quandary. Maybe I'll just buy a new boat for our empty boat lift at camp. Hmm, such wrenching issues.

On Vacation

2008-01-26T17:01:00.000-05:00

I haven't actually traveled anywhere, but my mind has certainly taken a hike on another trail. Classes started 2 weeks ago along with a pile of other obligations, some exciting, some trying, some mundane. I made a conscious choice to "avoid" myeloma in part because I know once the GRN163L trial starts there will be a potential Roswell Park overload brewing. The clinical trial finally got posted on clinicaltrials.gov ID: NCT00594126 The second arm has not "officially" started yet.

In the mean time, Happy Birthday Lu! She is now officially 2 years older than me. Hee Hee Hee. The not so little chillens threw Lu an amazing fondue feast that lasted 3 1/2 hours. I loved the active interactive communal atmosphere. The traditional Swiss "cheesy" part was only served with the pre-dinner bread and veggies. We then moved on to meat and pastas fondued in boiling broths and ended with decadent dark raspberry chocolate dipped fruit. My mouth drools just thinking about it. Another Happy Birthday to my dear friend Barb who will always be younger than me. Humm. I learned at her party from the Oud (lute) player that the word "lute" comes from Arabic العود (al-ʿūd), meaning a thin piece of wood. Before my charming wife took my name she could have been called, Lu Oud, or as we would have called her in grade school, Lulu Lute. She was a very thin little piece of Wood back then.

I started a health and longevity Tai Chi practice which I am finding both subtly difficult and rewardingly therapeutic. A wonderfully relaxing gentle form of exercise. Then there is the Healing Rhythms biofeedback "training for a happy mind and a healthy body." I highly recommend it, especially if you already own the Wild Divine (which I did). Lu borrowed a violin for me from school. I've been fiddling around with that. Boy I suck big time, but I am surely growing lots of new neurons these days.

Are You Listening to Music?

2008-01-11T09:59:00.000-05:00

My wife just reminded me what my therapist keeps asking me. "Are you listening to music?" I forgot to include it in the LPC123 pre-clinical trial. She sent me a snip it referring to a Cleveland Clinic back pain study. That got wondering about quantitative immune response studies of which I found way to many to reference. In short, music (that you pick is slightly better) can produce significant changes in all kinds of quantifiable immune responses: POMS-scale, CD4+:CD8+ ratio, cortisol, and cortisol:DHEA ratio. "The intervention of music demonstrates communication between the mind and body." [ref] Gee go figure.

I used to play the viola 30 years ago. I bet I could generate some significant immune suppression if I play at the Gilda's wellness group talent show at the end of the month. Then again maybe it would be so hilarious that natural killer cell activity would increase. [ref] There is a great review article on "The Impact of Humor on Patients With Cancer"

Go listen to some music and have a good laugh!

Doc Update

2008-01-10T14:25:00.000-05:00

I actually recorded a 30 minute discussion with a dear friend who also happens to be my oncologist Tuesday. That statement alone is very special to me. Of course what we talked about was rather important as well. Despite the expanding hole in my head there is no meaningfully significant indicators of progression. So a bone marrow MRI as well as numerous pre-GRN163L clinical trial pokes, prods and pictures are coming soon. I had an email discussion yesterday about a primary myeloma indicator (myeloma cell protein expression) and how tons of factors which are mostly unknown can effect it. In short it is tough seeing a 1.5 inch hole on an x-ray, balancing that with no other indicators of progression and then going back to living a great life. Heck I played tennis this morning and actually think my day was productive. I just finished a phone interview about Gilda's Club. That got to my bone marrow.

On the purely dry and informative side. I'll be in the second cohort of patients in the clinical trial which starts February 11th. There have already been several significant responders on the GRN163L Chronic Lymphocytic Leukemia trial. One individual actually over responded causing tumor lysis (with no lasting complications). Being in the second cohort means I'll be getting a slightly higher dose than the first pioneers. The trial requires a lot of follow up blood work which translates to "waiting around" and several bone marrow taps. They don't seem to bother me so I'm certainly lucky there.

Between now and then I'll be on the LPC123 pre-clinical trial. It involves plenty of Qigong, curcumin, laughing, playing, birthday partying, and a bit of teaching. It is going to be a great semester. Unlike any other I've taught. I'm a different person.

The Glorious Mundane

2008-01-05T21:47:00.000-05:00

For the most part my life is made up of the rather normal mundane aspects of being. Eating, sleeping, cleaning, etc. Truly exceptional experiences are pretty rare, hence the adjective exceptional. When some part of my normality is taken away I find myself readjusting, remaking normal, with a renewed appreciation for what was unnoticed, taken for granted. A side effect of Velcade slowly crept into my sleep over the last month. Restless leg syndrome or in my case more technically termed "Nocturnal Leg Cramps" focused in the calves but present in the thighs and feet to varying degrees. After a few sleepless weeks with countless attempts at relief ranging from prescriptions, supplements, massage, spas and heat packs to exercise to just plan old staying up all night and sleeping during the day I have been sleeping again. Fourteen hours last night - ye ha. Qigong and a walking meditation seem to have helped the most, but like any good scientist I can't say that with much certainty. I haven't taken Velcade in almost a month and maybe time is all I needed. Well whatever the cause the glorious mundane activity of a warm spa followed by a peaceful sleep is absolutely angelic.

May the angels guide, protect and shower you with love tonight. Sweet dreams.

Cat Captivation

2007-12-29T20:56:00.000-05:00

We now have a totally captivating bird feeder for Marlee and Dylan to chatter about. It is like a captivating video game. The birds could care less about the cat stuck on the other side of the glass wall. I also learned it is almost impossible to get both a bright outside and dark inside to expose correctly. Flash, no flash, more F-stop, less.... I'm just not much of a photographer and when you give me a professional camera I seem to get worse not better.

Well I hope your not stuck on the "other" side of a glass wall or ceiling. Life's just to short for that shit. Peace-n-Love

TRIAL-R

2007-12-28T17:49:00.000-05:00

As some of you might recall I got booted off the mapatumumab/Velcade trial a few weeks ago. An online preprint article published in JCI, TRAIL-R deficiency in mice promotes susceptibility to chronic inflammation and tumorigenesis seems to suggest that if one is deficient in TRIAL-R (a cell death-signally receptor) then an anti-TRIAL-R drug would not help matters. I of course am reading between the lines here, but the drug manufacturer is developing a test to screen for patients which over express TRIAL-R so as to target the biologic to those patients most likely to benefit from mapatumumab.

As we have learned genetic abnormalities in combination with any number of other stresses is the most likely path to cancer. The plethora of known and yet undiscovered genetic abnormalities which predispose one to a problem is daunting. Most MMers have a genetic abnormality impairing out ability to metabolize toxins. Add to that any number of other factors like a TRIAL-R deficiency and you have yet another of the countless ways to aid you in the manifestation of a disease.

So if you won the genetic lottery and happen to have no potential health related genetic abnormalities, are stunningly beautiful, amazingly intelligent, and have miraculously avoided environmental toxins, then I'm jealous. What can I say. You won the lottery and I didn't.

Happy New Year.

It's a Small World

2007-12-23T16:43:00.000-05:00

Have you ever noticed that despite a 1 in 6,000 chance of meeting another person with MM they seem to come out of the woodwork so to speak? My Mom emailed me yesterday about a 21 year survivor of MM she met. Yup you read correctly twenty one! Then there is the six degrees of separation phenomena published in Psychology Today and popularized by the 1990 play of the same name. Subsequently the internet has allowed the theory to verified to a rather high degree of precision. Wrap that up with Einstein's theory of relativity and poof you have not only a small world, but one in which no part is an island unto itself. It is an ever shrinking oh so small flat world.

It is the Season when I more often recall and reflect on just how thankful I am to have a world of friends, many I may never meet, who have touched me with their thoughts, prayers, wisdom and experiences. The countless thousands effecting a cure for what ails me. All those brave souls who went on clinical trials. My steadfast caregivers (Lu that's mainly you!) filling my life with joy, touching me with compassion and just being there by my side rain or shine.

May all your lives be blessed. Merry Christmas.

Wogo

2007-12-19T21:44:00.000-05:00

"Wo go" is not what you say to a spastic horse. Its a traditional Chinese medicine herb. As you can imagine when you are told "We can't cure what ails you but we have a pretty good idea you'll live longer if you try this rather nasty stuff we whipped up in the lab." you begin to look around for other brewers of less nasty concoctions with a bit of efficacy.

Dr. Min Li-Weber of the Division of Immunogenetics headed by Prof. Dr. Peter Krammer has been concentrating on pure substances from herbs that are used in traditional Chinese medicine. Investigating their ability to trigger apoptosis (cell death), the scientist has recently come across an interesting candidate: the substance wogonin, a plant flavone from Baikal skullcap. Wogonin causes apoptosis in leukemia cells in the culture dish, while it has virtually no damaging effect on healthy blood cells. Wogonin also led to reduced cancer growth in mice that had been transplanted human leukemia cells. [ref]

Wogonin increases the level of hydrogen peroxide inside the cancer cell leading to cell death. Hydrogen peroxide is one of my favorite disinfectants. Dispensing it on a selective cell by cell method is most appealing. Maybe Baikal skullcap will perform a two fold purpose, shielding my fragle skull and disinfecting my bone marrow. :-)

Decorating

2007-12-18T21:03:00.000-05:00

If you happen to live in (or drive through) suburbia USA this time of year you will know to what extreme decorating can be taken. Every town seems to have its notorious houses or in some cases streets. Just think if you would like to dedicate several months a year and a significant portion of your income you too could become a tourist attraction:
Ah the beauty of opulent over expression, OCD, and a love of electricity.

Instead I have a tiny 3 foot tree top (what I left behind will live...) from the back 40 decorated with colored rice lights. I find sanctuary in the simplicity. Then again there won't be any kids (or grandchildren) that need spoiling this year. :-)

Let it Snow

2007-12-16T16:05:00.001-05:00

Oh the weather outside is frightful,
But the fire is so delightful,
And since we've no place to go,
Let It Snow! Let It Snow! Let It Snow!

I just love the view out my bedroom window, especially on days like this. The old treadle sewing machine is slowing being buried in fluffy white stuff.

Gingerbread Houses

2007-12-15T20:06:00.000-05:00

I definitely had enough sugar today to blow away any anemia issues. You can't help licking your fingers, popping a M & M, and at least trying the egg nog. A bit of sing-along Christmas music, the children and their friends all came together leaving me with a big smile here at the end of the day. Lu gathered up the coolest construction candy ever this year. Most of it is totally disgusting, but it is awesome construction material. Tony mastered the frosting and brought the most wonderful coloring. We even had black frosting for the snowman's buttons. There is something that warms the soul when you spend a day laughing and being creative with people you love. It's got to be good for whatever ails me. :-)

Sunny Environment

2007-12-13T22:26:00.001-05:00

It just so happens that we (Buffalo) are getting our first real snow of the season. Backwash from the nasty weather that blasted the middle of the country a few days ago. I am sitting here looking at the puffy white stuff when I get this picture from my Mom on the Sunny Florida Gulf coast. I can wear shorts here by the wood stove, but that's it.

It is the fresh clean look that got me thinking about where or when I might have strayed into some ugly environmental toxin. Dr. Durie, chairman of the IMF, gave a presentation on the genetic finding from the myeloma DNA Bank on a Cure.

The study found that genetic pathways associated with the ability to neutralize environmental toxins are defective in patients with classic myeloma. "Identifying these genetic pathways was unexpected," said Brian G.M. Durie, M.D. "We were looking at bone biology and the SNPs associated with toxin metabolism fell into place. Now, working back through the gene pathways, we have a robust model of myeloma bone disease that may explain the epidemiological observations." [ref]

This is exciting news for my grand children. We may be able to identify those individuals most susceptible to environmental toxins and advise them of appropriate precautionary measures. Linking these finding to clinical therapies effecting a cure would really brighten my day.

Mindfulness

2007-12-12T21:19:00.000-05:00

I'm being mindful this evening. Take a deep breath and know I for one appreciate the time you spend reading my blog.

Peace be with you.

New GP

2007-12-11T20:23:00.000-05:00

I regularly visit a fancy new state of the art cancer institute, Roswell Park. Next door is Buffalo General Hospital. A facility in every state from ancient to the Jetsons. The last time I was there was as a MRI research subject to test, calibrate and fine tune their brand new suite of MRI machines. They gave me a really cool CD of my head for my efforts. Unfortunately the clinic I visited was last updated in the 70's. Unfortunate in that it prejudiced my mood and expectations. Sorta gave me the creeps. I used lots of Purell. It then took about half of the hour plus that the doc spent with me to realize he was respectful, really listening, thinking and giving me good advise.

In short, recent RBS (restless body syndrome) is not because of sugar control issues and probably not because of drugs. How about spending too much time in a lousy bed because I'm fatigued with too much stress because I don't like having myeloma any more. Hmmm Well I'm sure you'll find out if the myriad of orders I got has any effect. A few hours after leaving the clinic I spent an hour with my therapist. I'm fixed now. All better. I wonder what shape I'll be in by this time tomorrow...

Core Beliefs

2007-12-10T20:15:00.000-05:00

If you are like many folks dealt a cancer hand, a bit of self doubt and reflection are inevitable. Then of course there is the endless search for a cause. The daunting quest for remission. A veritable roller coaster of sorts. So if you'd like to live on a shaky foundation try taking a look at your core beliefs - you know the ones coming from your bones. Where you stand or how you perceive the world. Myeloma is a core belief type of disorder. There aren't very many folks so blessed with a reason to ever even look at their core beliefs. It's the blessing part I have trouble with at times. I'm off to sleep on that one. :-)

Faulty Protein Disposal

2007-12-09T20:03:00.000-05:00

I just loved the sound of this news article, "Mechanism Found For Faulty Protein Disposal" As you know I have a bit a faulty protein being spewed out by my laughing plasma cells. To add to the cool factor the research focused in on the retrotranslocons in the membrane of the cell's endoplasmic reticulum. It has Transformer like ring to it. My boy loved Transformers about 2 decades ago. They found the protein shredder for faulty proteins. There is a class of MM drugs, proteasome inhibitors, that gum up the shredder, clogging up the cell and killing it. The cell drowns in faulty protein. It gets even cooler though. There is a menagerie of chaperones watching for trouble makers that then become conspirators with the bullies if a protein screws up. Sounds like a junior high school dance on some alien Borg ship from Star Trek.

In addition to BiP and Herp, three other members of the menagerie, Derlin-1, p97 and Hrd 1 collaborate with Herp to extract defective proteins from the retrotranslocon so Herp can hand it over to the proteasome.

Need I say more! The sad part is if I didn't know the terms or names I looked them up and actually liked the article in Molecular Cell. I think I should go read a romance novel now.

Stem Cells

2007-12-08T21:14:00.000-05:00

There just happens to be a meeting in Atlanta, ASH - American Society of Hematology, where a large number of MM researchers and clinicians are spending the weekend. If you have a boat load of time you can read meeting abstracts until your brain melts. http://www.hematology.org/ One of the hottest topics, that just happens to extend beyond haematopoietic stem cells, is the finding of either rare tissue stem cells or progenitor cells in other forms of cancer. The belief is that treating the cancer cells, instead of the drug resistant stem cells that may be the source of the cancer cells, could be why initial responsiveness followed by drug-resistant recurrences is commonly seen. My quest has always sought the illusive therapy that focuses on the stem cells. These therapies are now just leaving the lab. GRN163L does have myeloma stem cell activity which I find very encouraging. I am also touched that my good doc gave me his cell phone number and said call me after I get back from Atlanta. Hope he's not busy... :-)

5% Memory Rule

2007-12-06T20:20:00.000-05:00

I have a great team of caring and attentive cancer care providers. The most important of which is my primary Cancer Care Coordinator (CCC), Lu (who also happens to be my wife). If you read my last post you might be able to infer that Tuesday was pretty disappointing. I put a lot of time, energy and hope into my treatment. It didn't work - at all. It might even have made things worse. That sucks. All that being said, the good Dr. looks at me and says "You won't remember 5% of what has happened here, but stop and listen to this. It is the only thing that is important. Your doing great. Your healthy. You don't have to think about any of this until next year. It's my job to be ready for you when you come back. Now go home and have a great Holiday Season." He went on and mumbled something about MM progresses and regresses. This is normal... blah blah blah. Sorta like Charlie Brown's mom.

I have been playing that tune all day. I am so psyched to not have to deal with all the headaches of treatment and feeling like shit afterwards. Merry Christmas to me. Ya God. Thank you thank you thank you.

Booted

2007-12-04T16:12:00.000-05:00

Yup that's right, no more nasty drugs until next year! No trip to the infusion clinic today! My plasma cells laughed at Velcade and had a party with mapatumumab (HGS1012). I was booted from the study due to "progressive disease". The indicator of distinction was the growth of the hole in my head from 2.2 to 3.5 cm in the 12 weeks I was on the study. I guess it's time to stop using it as an excuse for this mental drool you're reading.

Guess what I got to bring home with me today... the GRN163L clinical trial protocol. This is a single agent Phase I does escolation study with a weekly 2 hour infusion (and clinical trial related blood work, etc. etc. etc.) Although there is a relatively short history with GRN163L my impression after spending a considerable amount of time with the research nurse and oncologist was the side effects appear pretty tame and the potential efficacy being significant (at least for the CLL Trial). A single patient (out of about a dozen) experienced poor blood clotting ability (PT/INR).

There is no clinical MM efficacy to relay as the study has not yet recruited a single patient.

Medical Imaging

2007-12-03T18:45:00.000-05:00

I happen to be making up a final exam today and was working on a question regarding image resolution, dynamic range and spatial frequency. As is often the case with me, I get easily distracted when doing something that is marginally captivating. (Sort of like the laundry and dishes)

I happen to be getting the standard skeletal surveys which are a poor indicator of disease response. For starters bone lesions don't get smaller if you have a great response. There is some evidence that bone regrowth will occur, but it is a very slow process if it does. I have had a couple bone marrow MRI's done over the course of the past 2 years. They have the added benefit of no ionizing radiation and the potential for accessing bone marrow involvement albeit with low precision. So were do I end up... looking for cutting edge myeloma imaging techniques. There is a group of researchers in Germany working on PET markers for MM. The standard PET marker basically measures glucose uptake which is supposed to be higher in tumors than healthy tissue. The trick with PET markers is to find one that is specific to what you want to image and has sufficient uptake that the scanner can actually see it. I think there is an imaging question for a bunch of mechanical engineers to be had here. Hee hee hee. If you cut through the big words it boils down to is there enough "light" and is everything else dark. Another group from Cambridge, UK, has developed an exciting imaging technique called magnetic resonance spectroscopy (MRS) which is specific to changes in lactate dehydrogenase (LDH). MMer's know all about LDH. I get mine tested twice a week during this clinical trial. A change in LDH level in myeloma cells can be correlated with the amount of cell death and can therefore provide very early feedback of the efficacy of a particular therapy.

Nobody wants to keep taking a drug that isn't working. I sure would like to know if what I am taking is working! I'll let you know tomorrow. :-)

Peripheral Nerve Issues

2007-12-02T18:17:00.000-05:00

There has been a Significant Discovery In Neurobiology By Vascular Biologists which might have implications for the multitude of cancer patients dealing with peripheral nerve issues. Although like so many discoveries of this nature we won't see therapeutic application of it for some time, but having a new key to the puzzle does give hope.

Lead by Professor Sussan Nourshargh the research reports on the previously unknown expression and function of a particular cell adhesion molecule, junctional adhesion molecule-C (JAM-C), in peripheral nerves. JAM-C, largely associated to date with inflammatory disorders, was found to play a critical role in maintaining the integrity and function of peripheral nerves by forming an integral part of the insulating sheath that surrounds these nerves - the myelin. [news, abstract]

Many of the myeloma therapies (and other cancer therapies as well) have peripheral nerve issues ranging from permanent debilitating damage to annoying sensory disruptions. The possibility that myelin sheath integrity could be enhanced by a JAM-C therapy thereby alleviating a nasty side effect is exciting news.
Embryonic stem cells derived from skin made the news this week also. [Cell, Science] The lead investigator gave as an example of potential therapy, nerve regeneration. Again stressing years (not decades) before any therapeutic use would be realized. My lingering question was if you can derive embryonic stem cells from skin cells how about hematopoietic stem cells (that don't produce dysfunctional B-cells)?

Migrating Hematopoietic Stem Cells

2007-12-01T21:55:00.000-05:00

If you ever wondered where or how your blood cells came to be or just what they were capable of doing you are not alone. There is no other stem cell that is more thoroughly studied (and understood?) than the blood stem cell. Unfortunately like most scientific inquisitions as you learn more about a phenomena the number of unknowns increases (exponentially by the way). Ockham's Razor is my less than successful attempt to keep a handle on my ever inquisitive mind. New research from the lab of Harvard Medical School professor of pathology Ulrich von Andrian, published in the November 30 edition of Cell, now suggests that these blood producing stem cells' biological role is far more versatile and dynamic than hanging out in the bone marrow and replenishing our blood and immune system cells when needed.

He and his colleagues have found that HSCs can travel from the bone marrow, through the blood system, and enter visceral organs where they perform reconnaissance missions in search of pathogenic invaders. Upon encountering an invader they immediately synthesize a defense, divide and mature, churning out new immune system cells such as dendritic cells and other leukocytes, right on the spot.

"This process changes the way we look at blood stem cells," says von Andrian. [ref]

As an example of how you can start from a simple press release for a local clinical trial targeting myeloma stem cells (using GRN163L) through the beating-myeloma.org Cancer-Stem-Cells post to this little rant. :-) I just love learning more only to be humbled by more questions.

The Power of Electricity

2007-12-01T07:56:00.000-05:00

Electricity sure is handy. Especially if you want to use a computer. Lu and I had a wonderful candle light dinner, scissor soup. Not wanting to wield a knife in poor light Lu cut up veggies over a big pot of broth with the kitchen scissors. It was glorious. We watched a stupid movie on my laptop all snuggled up in bed and fell asleep really early. It was a bit too clouding to see the NGC 1512 spiral galaxy, but dream we did.

Immune Function and Meditation

2007-11-29T21:23:00.000-05:00

I went on a quick search for clinical studies of mindfulness-based stress reduction with quantitative measures of immune function. It is probably not surprising that if you have less stress your immune system will be more effective. A group of people enrolled in a MBSR program responded to a flu vaccine with higher antibody expression than the control group (the poor soles that got wait listed for enrollment in the next MBSR program). [ref] There is also evidence that plasma lactate levels are reduced as well as a significant myeloma prognostic indicator the acetylcholinesterase gene (ACE). [ref]

Some food for thought before meditating...

Orchids

2007-11-28T16:16:00.001-05:00

I saw an Orchid today at a friends house that has been in unblemished bloom for several months. I did a quick look and soon realized that there is an amazing number of Orchids in our world. So thanks Barb for the uniqueness of both the setting, but most importantly the stretching and yoga that helped immensely with the muscle aches and tension that seems to come along with Velcade. I'm going to go back next week for sure.

Now for some mindfulness-based stress reduction!

Surveying

2007-11-27T20:12:00.000-05:00

I bet I wasn't in my seat a minute before being summoned to have my skeleton surveyed. How cool is that. Twenty five x-rays all in slightly awkward poses. Deep breath, hold. Exhale, hold. Pray. Toes in. Palms up. yada yada yada. I promptly went to work and simply glowed for the rest of the day. That "Oh gee, you look sort of fluorescent. What's up with that." "I'm fine just don't hang out in my office very long."

Oh yea and there is a hole in my head.

Trial Response

2007-11-26T19:53:00.000-05:00

I get to go in for my second battery of clinical trial response tests in the morning. It is actually trivial, a bunch of blood and few dozen x-rays. Having a friend, Betsy, along for the ride will make it all the more enjoyable. Unfortunately I'll have to wait a week to learn anything. I got home really late today and Lu and I are going to watch a movie.

Mind Body Practices & Stress

2007-11-25T18:49:00.000-05:00

I try to keep this blog lite and humerus. It certainly helps my level of stress. Here is a rant that is lite on the humor...

There is a ton of scientific data demonstrating that the chemical messengers coming from our brain cells carry messages to the immune cells. The reverse is also true. Our immune cells release messenger molecules which the nervous system uses to provide feedback information to the brain or other organ systems. Dr. David Simon likes to use the phrase, "Our immune cells are eavesdropping on our internal conversation." If this is indeed the case what can one do to enhance this internal dialog to strengthen our immune system.

Diet: Remember the phrase "You are what you eat." I believe there are many more levels to that than nutritional. How was what you are eating created? Was it mass produced and then slaughtered ruthlessly or grown by a local farmer who shares your values? What you consume effects the whole planet as well as your body. I call it mindful munching. There are several MM bloggers seriously minding their munching. I just read a pretty convincing article "Surviving Against All Odds: Analysis of 6 Case Studies of Patients With Cancer Who Followed the Gerson Therapy" Gerson therapy is an example of extremely mindful munching. This review clearly implicates a connection between what we eat and tumor progression. Case 4 was a remotely related malignancy, non-Hodgkin lymphoma, which was graded at stage IIIa in 1999 and as of August 2001 has been judged free of disease.

Meditation: Mindfulness-based stress reduction (MBSR) is the most frequently found term in the medical literature relating to "meditation" and cancer. I could find no articles in which negative efficacy was attributed to cancer patients enrolled in a MBSR. Although very few well controlled studies have been done the literature reviews [1, 2] place the techniques in a favorable light suggesting potential benefit in the oncology setting. It is my belief that quieting the mind on a regular basis will send calming signals to the immune system. On that note I guess emotional toxins probably lead to physical toxicity as well.

Thats enough for one day don't you think?

Peekaboo Where are You?

2007-11-24T15:28:00.000-05:00

Marlee was upset that she couldn't Skype her distant cousins in Italy, Peekaboo, Priscilla, Puzzola & P???. When Margaret gets Skype up and running, Marlee wants to be the first to make contact. The chillins got to talk with Gramma in Oregon and that made her very jealous, so she put on her prissy Mar-LEE Anne attitude and sulked in front of the Skype camera until the heat of the wood stove thawed her resolve.

Keeping an Open Mind

2007-11-23T19:32:00.000-05:00

My oncologist (and I) are of the belief that the likelyhood a single agent being the magic bullet for what ails me it slim to none. That being said I concur with several other blogger's throw everything (including the kitchen sink) at it. I.e. Don's Program. As you will quickly see the stamina and discipline Don has can be awe inspiring. So to not let that induce any stress I realized as I was again overeating the day after Thanksgiving while sitting in front of nice crackling fire after a quick event free dose of hand candy that fungus from my firewood just might be helping. Chaetocin, a small-molecule natural product produced by wood fungi, has shown promising anti-myeloma effects. There are currently several chemicals that are structurally similar to this in clinical or pre-clinical trial for myeloma. I guess keeping an open mind and not letting a little mold, fungus or other weird stuff get you down is important.

Chaetocin: a promising new antimyeloma agent with in vitro and in vivo activity mediated via imposition of oxidative stress,

Thomas H. Huxley
"The great tragedy of Science - the slaying of a beautiful hypothesis by an ugly fact."

Gobble Gobble

2007-11-22T20:49:00.000-05:00

I am oh so thankful for each and every one of you. Thank you for your comments and encouragement. Your love and prayers make a difference. I truly appreciate your presence.

Happy Thanksgiving.

NOXA

2007-11-21T17:39:00.000-05:00

Noxa is Latin for damage. In the molecular biology world it refers to a protein that promotes cell death (pro-apoptotic). The wonderful drug I take screws around with the Noxa levels (hopefully just in the myeloma cells). A few researchers at the University of Michigan Comprehensive Cancer Center (as well as numerous others) are working on enhancing the NOXA effects of Velcade (bortezomib).

"Now we can rationally design drugs that enhance bortezomib's action and favor NOXA production," she says. "Improvements might make it possible to give lower doses of the drug for a shorter time." [Medical News Today]

I for one would like to take significantly less bortezomib. It feels like there is a bit too much programed cell death going on in my muscles (and head.) The UM study focused on melanoma which I should now have a much lower chance of ever developing. Ye ha.

If the folks at MIT could just Remote-Control a few billion Nanoparticles to Deliver Drugs Directly Into my laughing plasma cells I'd be all set.

Stress Hormone

2007-11-20T17:46:00.000-05:00

It certainly isn't a surprise that stress might have an impact on ones health. It is interesting that someone looked at the effect of a stress hormone, norepinephrine, on myeloma cell lines. The early disease stage cell line responded strongly to the hormone. The implication proposed was that the hormone stimulated the production of new blood vessel growth (up regulation of VEGF) which is needed for the proliferation of the malignancy.

The researchers believe that blocking these receptors would slow the process of the growth of more blood vessel to the tumor, delaying disease progression and perhaps allowing treatments to be more effective. Widely used “beta-blocker” drugs now prescribed for high blood pressure work by blocking these same particular cell surface receptors, Yang said.

I will spare you any conjecture from these finding. If you didn't agree with me it might be stressful. :-)

-- source --
Stress Hormone can Speed Cancer, By: Rick Nauert, Ph.D. Senior News Editor, Reviewed by: John M. Grohol, Psy.D. on November 20, 2007, http://psychcentral.com

Antibodies

2007-11-19T18:29:00.000-05:00

I find it amazing that we have an immune system that produces around 10 billion different antibodies, each capable of neutralizing a specific nasty (antigen) like the measles virus or that neurotoxin tetanaspasmin which causes Tetanus. These antibodies are produced by a particular lymphocyte (white blood cell) called an activated B cell or plasma cell. Any antigen that gets into our blood or lymph fluids is combated by a B cell produced army. If we have never encountered a particular antigen, like this years flu, before naїve B cells proliferate to form a new battalion of soldiers. Most of the soldiers are immediately activated as plasma cells which shoot a very unique antibody capable of neutralizing the invader. When they have won the battle the plasma cells are discharged and quickly die off. The top brass with a memory of the enemy can persist for a very long time (up to a whole lifetime) and will quickly recognize and neutralize the enemy if we ever encounter it again. Each of us has an ever vigilant constantly patrolling army of naїve and battle seasoned memory B cells.

If after the battle is won those discharged plasma cells don't bugger off and die you have some form of myeloma. Lets hope it is a benign manifestation of no significance (like MGUS). If you have a bunch of confused disorientated and delusional top brass (like the Bush administration) they may be activating plasma cells without an enemy. The plasma cells keep fighting, shooting blanks (antibodies specific to an invader that doesn't exist). Things can get really out of control. The army can get so bloated and out of control that they start crowding out everything else in the environment (the bone marrow), send erroneous signals to the rest of immune system and plug up other systems (like the kidneys) with useless antibodies.

In my case one of the things my intoxicated laughing plasma cells are doing is signally the rest of my immunity system to shut down. "Don't bother waking up, sleep in, everything is taken care of." All my useful fighters (immunoglobulins) are slowly being lulled into submission. Here is a graph of my immunoglobulin expression since this out of control army was found back at the end of 2005. There are now about 10 times fewer immunoglobulins than there should be. That is a good incentive to be neurotic about what I expose my self to.

I Like Graphs

2007-11-18T19:03:00.001-05:00

So I graphed everything I think of today. Lu thinks they are too hard to understand. Too much clutter. I agree, but still find them exciting (no comment!). Margaret explained the Bence Jones urine protein test today which for my wonderfully weird myeloma needs a bit of interpretation. A normal monoclonal protein is composed of two types of smaller molecules, one called a heavy chain and the other called a light chain. You may have heard of the heavy chain immunoglobulins, IgG, IgA, IgM... (mine are severely depressed.) The light chain portion is referred to as either kappa or lambda. The heavy and light chains are produced separately within the plasma cell and are then assembled to form a whole immunoglobulin. Normal healthy folks produce fully functional pathogen fighting warriors. When the light chains are attached to the heavy chains, the light chains are referred to as bound light chains. However, when the light chains are not attached to the heavy chains, they are called free light chains.

My laughing plasma cells partied to much and no longer know how to make the heavy part. They spew nothing but unbound free light chains. To add insult to injury the little bastards are very aggressive. Frits van Rhee et al published a paper a few months back in the journal Blood titled "High Serum Free-Light Chain Levels and Their Rapid Reduction in Response to Therapy Define an Aggressive Multiple Myeloma Subtype with Poor Prognosis". To the careful eye you will see in the graph below that my lambda light chain level responded in the first cycle of Thal/Dex and then promptly started ignoring the drugs. I wish Frits had published his paper back in February of 2006. I would have stopped taking Thal/dex after a couple months. I am anxiously awaiting the next free light chain (FLC) results to see if Velcade and the TRM-1 antibody turns the lights out on my plasma cell party.

Speed Record

2007-11-16T21:50:00.000-05:00

Roswell broke a speed record today. In and out in an hour. I don't think I've ever spent an hour on the can, but if this trend keeps up there won't be any worrying going on either. On Friday evenings the place is dead. No backups anywhere. I like deserted.
To average all things out we went to Chesters (Cajun) for dinner and waited forever for a table. We decided to not go there on Fridays last week. Brain Fart. Great food and friends are the ultimate anesthetic. I probably won't remember how long the wait was the next time they call either.
Velcade does a nice job of screwing with platelet counts. During treatment they drop precipitously and then pop back up during the week off. My RBC (red blood cell count) is unfortunately steadily dropping. I have to wait a couple more weeks to see the important markers.

Train Wreck

2007-11-15T16:22:00.000-05:00

As you might suspect most appropriately nasty chemo drugs have a list of side effects about a mile long. I mentioned a few of the more exciting ones a while back of which I am happy to report I have none. I also mentioned that 13 is a most unlucky number. Tuesday the 13th, the 13th stick, has proven to be a real stickler. I got the joint and muscle pain restless body syndrome. Sort of a mild flu without the fever and other nasties.
I am most thankful for 10 weeks of bliss. A few short walks around the infusion clinic and I feel like a million bucks. Boy do I have a great life. In fact I'll kick some ass on the tennis court in the morning. Teach that little yellow ball a lesson or two.

Sticky Day

2007-11-13T15:48:00.000-05:00

No it is not hot and humid in Buffalo. Rather 13 is an unlucky number. For the first time in 13 sticks my hand candy (chemo) nurse gave up after two unsuccessful sticks. She had to bring in a pro (a nurse with more than 2 months experience). The stick is no big deal, but the dig after the stick was most unpleasant.

I am working on reducing this whole ordeal to the level of a bowel movement. Something I just do. I never remember the last one or wake up at night worrying about the next one. On rare occasion they are a pain in the ass. More often than not they just happen without a conscious thought.

SAD

2007-11-12T10:00:00.000-05:00

"An extreme form of seasonality is manifested as the clinical syndrome of seasonal affective disorder (SAD) with carbohydrate craving, hypersomnia, lethargy,and..." [ref] So now I know why comfort food needs to be loaded with carbs, tastes best in the winter and that I should figure out how to work from the Caribbean from October to April. As a counter measure until I figure the last part I take Vitamin D₃. Along with it the team of experts sucks plenty of blood (a couple times a week) to make sure I'm not screwing anything up.

Combine SAD with hot flashes and you get the 5 dwarfs: Weepy, Piggy, Bloaty, Bitchy and Crampy. Two of the dwarfs, Horny and Red-Tide are in the Caribbean.

Crazy Sexy Myeloma

2007-11-04T09:34:00.000-05:00

My brother-in-law sent me a DVD of The Learning Channel's, Crazy Sexy Cancer. It is a video documentary of Kris Carr's adventure which started on Valentine's Day 2003, when she was diagnosed with a rare vascular cancer. Weeks later, she began filming her story. Although I get a bit jealous at times of her seeming unlimited resources to experiment with funky complementary healing modalities I find her message sincere, informative and supportive. She has a blog, http://crazysexycancer.blogspot.com/, chuck full of useful info about her journey. One of the women on the show, Jackie Farry, was diagnosed with multiple myeloma in the winter of 2003, while on the road with one of her bands. With little insurance, no work and a pile of medical bills, she organized the "F**k Cancer Benefit Concert and Raffle" and has a nice "F**k Cancer" hat for sale. If you don't know the meaning of "F**k" here is a nice YouTube explanation.

My baby boy turned 26 yesterday. Yup I'm a proud Dad. I'm still reminiscing of the pure ecstasy brought on by a gluten free chocolate cupcake.

Lot-O-Numbers

2007-10-31T11:58:00.000-04:00

So it took an extra week for the lab techs to determine they were "Unable to Quantitate" my M-spike. Seeings how I started with "None" I should not try to quantify "Unable to Quantitate". My official clinical trial "Response Report" summarizes the findings as "Stable Disease".

Now to add a nice twist (or rant) to all this. My lovely mutation does not express an M-spike and therefore watching it is a stupid idea. Name calling is inappropriate though. So I watch the levels of a particular light chain protein which is monitored with a serum free light chain assay or a similar urine electrophoresis free light chain test. Over the last 2+ months my expression of lambda free light chains has dropped from about 1500 to 1000 (mg/dL) after a trend of doubling every 2 months previously.

I'm going with the optimistic perspective on the "Stable" interpretation.

Hot Flashes

2007-10-16T07:00:00.001-04:00

I now refer to a Velcade cycle as a course. Not that I have learned anything, but as a token of a new found appreciation for a woman's monthly course. No my hot flashes are not accompanied by cramps unless the precursor to the powerful room clearing almighty wind counts. There are no unprovoked emotional expressions (at least as far as I'm concerned!) The blood lose is minimal, extremely sanitary (according to the phlebotomist) and so far the anemia is minor. I have learned not to expect any form of compassion or sympathy (especially from men). Proximity to clean porcelain altars is important. (I hydrate like a sea cow, but don't live in my urinal.) Chocolate, a warm bed and a good book help.

As for the boring details: Two courses down with nothing exciting to report other than reporting nothing exciting is exciting to me. Funny how the mundane becomes significant when threatened. My blood counts trend down for 2 weeks and then bounce back during my week off. On Friday every line in my CBC and CMP was within normal ranges. I'll learn next week if any myeloma significant markers have changed.

So, I'm off to see the wizard... with my orange buckets and plump veins.

Balloons

2007-09-26T10:52:00.000-04:00

Velcade often causes gas (and worse blowouts). It is a potent chemical weapon causing facial contortions. So I have the week off. (from Roswell at least!) We celebrated with a quick trip to the Adirondack balloon festival this past weekend.

There is nothing more wonderful than being surrounded by love and laughter. Friends and family from all over the country made for a weekend I'll always remember.

My nephews specialize in anarchy. So I got the younger one a CB radio for his birthday. We built a fire to destroy things in. I think explosives are needed. Ma and Dad 'll appreciate that I'm sure. They live 3000 miles away so we should be safe on the east coast.

Quinine

2007-09-19T10:17:00.000-04:00

Other than the general pain in the ass of spending a good portion of a day sitting around reading John le Carre' or listening to Dune (Frank Herbert) I have to admit to feeling just fine. Velcade (bortezomib) messes with cellular level protein "recycling". Being an avid recycler and former bicycler has undoubtedly altered my cellular level wisdom. Therefore intracellular protein buildup caused by Velcade which often leads to a cellular level dehydration manifested as fatigue just ain't happening. (ha ha) Quinine is suggested as a counter measure. Unfortunately tonic water without the gin is pretty nasty stuff (and loaded with high fructose corn syrup or aspartame). The only FDA approved use is for malaria so a script is not an option. Do you know of any other sources?

Joanie

2007-09-15T18:06:00.001-04:00

My dear friend Joanie won her battle with breast cancer this week. Great news in a difficult to articulate, tough to deal with sort of way. It is wonderful having friends you can count on for a laugh and a smile. Those special few who somehow just shine despite the weather. I am blessed with memories of Joanie shining brighter than ever, burning off some of that fog that settled in like pea soup, stranding me panicked scared and lost while out cruising on the Cancer Parkway. I am honored to have such a beacon shining in the here-after. Shine on girl friend.

Oh yea and that Friday evening trip down the Parkway to Velcade has left me feeling just fine. Nice place, no fog!

Side Effects

2007-09-13T15:05:00.000-04:00

I am happy to report that no unusual regurgitations have occurred. Just the normal verbal drool. I can see just fine. Of course the weird headache and runny nose must fall under one of the 3 pages of potential side effects somewhere. I couldn't just have the sniffles. No hysteria in that! When I stop laughing about this crazy journey of mine you'll know they finally gave me some nasty shit to shut me up.

Trial-R1

2007-09-12T10:16:00.000-04:00

Well the defense team was stellar yesterday. In fact bored at the lame pace of events. Stick and suck, wait, poke, prod and measure... wait, stick and drip, wait, measure, wait, measure, wait, measure wait. 8 hours later I left for home. Neither my blood pressure or temperature reacted. I got through most of a good murder mystery set in the fictitious town of Millers Kill, just up the Hudson River from my home town. I like the way places and businesses were renamed to protect the innocent. When the nurse pulled my IV and splattered blood on the page I was reading it added nicely to the thrill.

In short I was randomized in the clinical trial to receive the high dose of TRM-1 (a Fully Human Monoclonal Antibody to TRAIL-R1 which appears to have some anti-myeloma efficacy). So after I received the Velcade and a 1 hour infusion of TRM-1 I sat around for 4 hours to make sure I didn't have an allergic reaction. Hence all the measure and wait crap.

The Benadryl they gave me knocked me out by 8. Now I just feel like I had a lousy breakfast. I'll be watching for these especially exciting Velcade side effects:

vomiting material that looks like coffee grounds (I filter my coffee)
inability to speak or understand speech (normal interaction with colleagues)
loss of memory (normal, besides how would I know?)
loss of vision (after the memory loss would be preferred)
difficulty thinking clearly (maybe Lu could comment on these?)
difficulty using good judgment (normal)
difficulty understanding reality (normal)

Provided I can see if I hurl coffee grounds you all will have to let me know if I seem to be especially "normal" in some unique way.

Trial Tests

2007-08-29T18:00:00.000-04:00

I had yet another skeletal survey yesterday. Why 50 more pictures where needed is of questionable efficacy. Maybe low level radiation is linked to myeloma and this is all a big scam. They through in a chest x-ray for good measure. If I am not glowing today I never will. The EKG indicates I still have a functioning heart. The physical indicated I am indeed physically present (and reasonably healthy). I studied hard for the pee and blood tests so I should be able to start the trial in about a week.

We switched to a Tuesday morning & Friday after class schedule (so I can continue to escape on the weekends).

This past weekend my soul was touched by many dear old friends. It is absolutely wonderful to be graced with life long friends.

Stalling

2007-07-24T19:32:00.000-04:00

I have managed to forestall treatment until early September. I figure a few days of infusions each week should be a nice way to bring in the burgeoning fall. What is left unsaid here is the surprising tenacity of my plasma cells. Those little bastards got right back to reproduction and have steadily crowded out half my marrow over the past 10 months. I am happy to report there are no new holes in my head though. The current ones provide ample excuse for the quality of this verbiage.

I'll bolster my defense team for that anti TRAIL-R1 docket NCT00315757 I mentioned a while back over the next month. The bolstering will come in the form of heightened creativity leading to effortless productivity while enduring lots of lakeside captivity.

Skeletal Survey

2007-07-17T23:43:00.000-04:00

To the untrained optimistically biased eye the holes in my head are smaller. I like my perspective on life (most of the time). So Thursday I'll take a biased look at some MRI reconstructions. On Monday we'll let the "experts" air their biases. They need a lot more time to come to a more sophisticated sounding interpretation. Surveying can be complicated.

In the mean time I will continue to jump away on the water trampoline and try not to get sun burned.

The Sandpiper

2007-06-13T22:58:00.000-04:00

Lu's stroke of brilliance this month was purchasing a time share in Lincoln City on the Oregon coast (for the same price as renting the place.) Here we are in awe of the amazing view from the front deck. My therapy this week was to raise my cellular vibration by communing with nature. Walks on the beach, hikes in the woods, birding, wonderful drives along the coast and a temporary bit of sand art to gaze at out the front door.

Orange Buckets

2007-05-29T12:06:00.000-04:00

It is nice to not have to leave my office to pee. My handy orange bucket is safely tucked away in my back pack. I wonder what my lab tech does with these jugs of lemonade. Do they have a lab pool to see who gets the honor. Maybe rocks, paper, scissors? It could be a desirable test because it takes so long. All the centrifuging and separating and waiting...

So in another week and a half I'll let you know what they found. A vacation in the meanwhile sounds good to me.

Standing Ovation

2007-05-17T23:07:00.000-04:00

On Tuesday Lu and I attended the annual Gilda's Club Western New York benefactors awards luncheon. Nice lunch, sorta boring awards descriptions and acceptance speeches. It closes with a 3-4 minute talk from a club member, my wife Lu.

Skipping and paraphrasing her message: Have you ever been driving along on a rather normal morning and suddenly wham your in a bank of fog so thick you can't see out of the car. Your panicked... should I stop, no I'll get rearended... should I pull over, where is the road? am I on the road? am I going to crash into something. freaked... panicked... scared... Well on December 27, 2005 when the doctor said to Scott you have multiple myeloma, I drove into the thickest bank of fog I have ever known. Stranded, alone and scared in a fog so thick I couldn't even think.

Then there are tail lights, faintly glowing red in the fog. Some sense of relief, I'm not alone. Those red tail lights are like the Red Door at Gilda's Club. A light in the fog. A place where I am not alone in this fog.

...

Well as she walked off stage I stood tears streaming and reached out for a hug. What I next saw was 700 hundred people all standing, many crying, all clapping.

It was a moving way to say thank you to all those benefactors who help make Gilda's Club a sanctuary of hope and companionship for those of us touched by cancer.