Friday, December 11, 2009

Strange Attractor

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

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

I smile tons and life is grand. Happy Holidays!

Saturday, October 24, 2009

Elbows off the Table!

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

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

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

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

Sunday, August 30, 2009

Waltzing Through Summer

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

Tuesday, June 23, 2009

I'll Take "Better"

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.

Wednesday, June 03, 2009

Cycling Continues

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. ( 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.

Tuesday, May 05, 2009

Oregon Coast

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

Monday, March 30, 2009

Munching Continues

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!

Thursday, March 05, 2009

Munching MM

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.

Friday, January 30, 2009


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).

Sunday, January 18, 2009

Fantastic Voyage

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.