Thursday, March 31, 2011

The Goal never gets old

The Goal never gets old

Hockey and CLL- a winning combo. You probably need to be Canadian to know of this iconic moment, this crowning event in the history of the true north, strong and free, when the great nation north of the 49th parallel beat back the might Soviet Union and snatched victory from the stick of defeat.

We scored. Actually he scored, Paul Henderson, and the nation let out its collective held breath for the first time that day, that month.

We were, and I need I remind anyone, remain, champions of the world (last Olympics).

Thank you Paul W. for the link.

Canada does a much better job covering CLL in its popular press than the USA. I guess we are not as sexy as breast or colon cancer.

We remain mostly invisible and we don't need surgery. And we usually don't die right away.

But we CLLers are a good example of a supportive community across different ages, races, geographies, and classes. We are mostly blameless for our woes, but we struggle for a smart cure together with our support groups and clinical trials. We are brave and tough and wise. And we all know we are all in this together.

Oh well, we will get our day in the sunshine sometime. I for one am pushing for that.

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Bone marrow Biopsy and aspiration

It was about as painless as having two big bore needles put into your posterior superior iliac crest could be. Dr Kipps was great and the lidocaine worked its magic. Except for the transient but very weird and quite nasty feeling when my marrow was being sucked up into the syringe (I wish this experience on no-one), it was a non-event.

So nonplussed was I by the absence of the usual pain, I left without remember to get my blood drawn until we were 10 miles down the road in Leucadia enjoying a raw organic vegan lunch (wakame salad and a fantastic raw "burger") at the small but purposed raw eatery, Greenery Cafe .

No results on anything yet, but I should have the blood test back by tomorrow. Actually I should have had them today, so I am slightly put off. They are ready in 30 minutes at the most.'

And in typical Kipps fashion, the simple CBC (only 1 vial of blood he told me) turned into 8 with a retic count, a Coombs, chemistries and as those extras for his research.

He is obviously worried about my anemia. So am I. A little.

Kipps found my nodes in my neck have grown a bit, though most reamian small. Still my CLL may soon be demanding more attention. He did say it was OK to shift to MR to image my gut nodes as to avoid radiation exposure. We give up some accuracy, and may need a CT if Campath is part of the plan, but that is not likely soon.

Hopefully, nothing is likely soon.

The most recent results on the exciting breakthrough treatments such as CAL 101 have been more honest, and thus disappointing, but I remain hopeful that the silver bullet for CLL is being tested as I type.

If not ready when I need it, there is always transplant redux.

Still my CLL has been pretty tender and easy to nudge back, and most of my powder is still dry. Plus my counts, except for my very slight anemia, are super, so I have plenty of time to put my finger to the wind and judiciously choose my next crazy course of action.

I have now also waited a week for the path report on whatever is growing on my scalp (Those of us with CLL are experts at growing skin cancers). That too is overdue, but I am in complete denial that there could be any bad news brewing there. I vote for traumatic inflammation.

Now back to the difficult part, the waiting for all these results.

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Thursday, March 24, 2011


I have been on the road again. This time to Italy and the UK.

While it was brilliant to be traveling, it is deeply comforting to be back home

My labs today on my first day home showed very healthy platelets again (387,000), but my red blood cells have drifted lower than ever with hgb. of 12.7. This convinces me of the need to go ahead with my bone marrow biopsy.

While I was gone, I never thought about CLL, until my penultimate day when I had a lovely tea at the home of Dr. Hamblin. More about that in my next post.

About Italy first.

It was a wonder filled trip full of new and old friends, great feasts, and colossal sights covering an amazing span of few millenniums of art, refreshed by an emergence in history, culture, and of course, food.

I paused often as we walked through the preserved large town of Pompeii to contemplate the homes and gardens and shops and temples and forum and theaters and gymnasiums and brothels where thousands of lives were snuffed out so suddenly 2000 years ago. Some villas show the plaster body casts of the preserved desperate souls who died trying to escape from the toxic fumes. Tsunamis today, volcanoes then. Life can take horrific turns, and we have no control. None.

Rome was so deep and full and overwhelming in a jostling but friendly way. Layer on layer of city on top of city. The architecturally perfect Pantheon and the confectionery perfect gelatos.

The Vatican , where Raphael and Michelangelo painted the walls of the Pope's bedroom and office and chapel- that is a transformative experience.

The colors in Venice, and in the nearby island of Burano are magical. Every postcard and painting you have seen of this unique city, they are all true, but only tell half the truth. It is more beautiful, more subtle, more magical.

Toured the world’s first ghetto and was reminded of the intolerant dangers of the "certain knowing" the only truth and the power of oppression.

I was totally at home in walking trough a city where there are no cars, no bikes, only feet and boats. Will Project Moses hold the water back? Will Venice become a museum rather than a living city? Only 45,000 people leave there now and thousands leave every year.

See Venice and live.

Ah, Florence- the Botticellis, the Da Vincis, the Michelangelos, the Galileos. When the mind is opened up to reach beyond the contemporary, to grab the best from the past and forge a new now- to stand next to such genius is a treat to be savored. That was the renaissance. We could use a new one.

I am constantly hit over the head with the simple reality that life is to be lived.

But I am glad to be done with travel for now. It has not been easy and I am sore and tired and miss my raw green veggies.

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Wednesday, March 16, 2011

No news is good news

I get worried when friends don't post for weeks on end. I fear they are not wanting to share challenging news. They are hiding something perhaps.

I can too quickly envision the worst.

So I should be more sensitive and empathetic about what others may be thinking when my posts go cold for weeks on end.

In my case, no news is good news. Labs are not trending any way, up or down. Nodes aren't gone, but aren't growing. Energy is still low, but not lower.

Boring boring boring, which is perfect! I love it.

There is little new to write about from the CLL perspective, but I have a bone marrow biopsy scheduled and a few new thoughts on how I plan to handle imaging studies and maintenance therapy all that need to be formulated and posted before the end of the month.

Mostly I have some internet access issues, and it will be a short spell before they are all resolved, so my next post is likely at least a week away.

So no worries, mate.

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