Friday, September 28, 2012
Friday, September 21, 2012
Hole in My Heart
Monday, September 17, 2012
I saw Dr. Kipps last week and with his deeply delving fingers he was able to unearth some cervical nodes that no-one, not even the owner of this body, has ever felt.
But they were all small, less that one by one centimeter and maybe smaller than 90 days ago. When they are that size it is hard to tell if there's been any change.
My counts were still good. The neutrophils were back to normal after the jump up from my burst of methylprednisolone for the fluid behind my right eardrum. My platelets were over 400,000 and my Hgb was 13.8. All good stuff.
The CLL is still there but it is behaving itself. It's pretty stable, moving sideways at worst and more likely improving at a glacial pace.
The only trouble on the horizon is that my right ear is clogged up again. Seems that the steroid fix was only temporary so my family doctor suggested a trial of Afrin. It only helped a little and I needed to stop to avoid the rebound swelling that happens with extended use, so it's time to consult an ENT. I am less worried about it, as it is not progressive, easy to knock back, and mostly just annoying. Still time to check it out and make sure there is no structural problem. He may want to put a ventilation tube in, so I better get my surfing in first.
I am down to one infusion a month of IVIG here, and one more blood draw at OSU. That's more good news as my veins are pretty battered after so many years despite all my efforts to protect them.
Let me give you a sense of some of what I see happening in CLL just with people I know.
In this week alone, I learned that a friend, Chris Dwyer of CLL Canada has developed Richter's Transformation. Heard from another long time CLLer with both AIHA and ITP. After having curative surgery for lung cancer, some else is fighting to get back in the NIH ibrutinib trial which helped her knock back her CLL big time. I had dinner and a wonderful visit with a pal from the east coast who is doing great post transplant at MDACC for both CLL and MDS. Another long time local friend is considering the phase three trial of ibrutinib versus ofatumumab for his relapsed CLL. I said go for it. Talked with a young Asian woman who was diagnosed in her twenties. And this is supposed to be a disease of old white men. And I connected with two CLL widows. Not fair. It's not fair, any of this.
Sometimes the CLL is the least of our problems.
I am back in Ohio in a week. Let me know if you will there too.
L'Shana Tova to all my Jewish friends. May it be a year of peace and good health, May this be the year we see a cure to all cancers.
As for myself, at this time of self reflection and self improvement, I plan to double down of getting the word out about CLL to patients and providers alike.
I will be lecturing on CLL in Las Vegas next month to about 400 family doctors, and hope to be reporting from ASH again in Atlanta next December. But I have much bigger plans, Stay tuned
But first I need to visit my granddaughter.
And for something a big more upbeat than CLL, I am growing my own organic tea. We have two beautiful camellia sinensis, variety sinensis bushes each about two feet high. Tried my first cup. Picked a few leaves that had fallen off or been injured in transit, let them wilt in the shade for a hour, steamed them for a minute, dehydrated them at low heat, and then brewed the crispy leaves at 175 º for exactly 75 seconds. A rich smooth flavor, a lovely golden color, an almost silky taste in my cup. I am in heaven. Why didn't I try this before? I will need to let them get much bigger before I can harvest enough to meet my "habit" and must avoid for now picking the new tender growth that makes the best tea, but it's a good start.
It's always good to be starting something new.
Sunday, September 9, 2012
Seven Years Ago Today CLL Entered My Life
Seven years ago, it started so innocently. Some lumps at the back of my neck at the hairline. Soft, mobile, not tender. The symbol for cancer is the crab, with its pincers grabbing and invading. A tenacious rough visitor who clings to its hard won territory and gets ready to expand its reach. This felt nothing like that. These were smooth and rubbery, but persistent. I was overdue for lab work so I ordered blood work on myself (one of the advantages of being a doctor) including the usual lipid panel and blood chemistries and a CBC on September 7, 2005.
The next day, Sept 8, 2005, seven years ago today, rocked my world. I remember being happy that my cholesterol was so good, and that my chemistries were are fine. What did that matter when my white count was way too high and it was all lymphocytes?
While it would be more than a week before the final diagnosis was confirmed, that day everything changed. A disease enters our life when we decide we have had enough of the worry or the uncertainty or the pain or the itch or the whatever. The limit of tolerance or the limit of anxiety has been exceeded and we need relief, but it comes with a price tag. We seek help. We consult a doctor who makes a diagnosis. Many of these labels, a sprain or bronchitis or a migraine are temporary. Many are not. Professor Ian McWhinney, the father of family medicine in Canada, and one of my mentors laid the groundwork of this understanding about how a word, a disease comes to our lives. Some maladies are amorphous, nameless and usually evanescent. All the bad one ones have names. and if it is compounded, it's usually really bad. Get scared if it's three words long and the first word isn't benign.
My three letter monster, CLL or chronic lymphocytic leukemia has been my traveling companion since that fateful day seven years ago. No, that's not right, because more than once it has been the driver, grabbed the steering wheel and heading us over a cliff until I could wrench back control. The first time was when another three letter hitchhiker, ITP squeezed into the front seat and sent us careening towards the rocks over and over again.
Cancer patients talk about pre and post diagnosis as different universes, as an epic paradigm shifts whether we want one or not . We talk about "the new normal". We talk about altered priorities, lost trivialities, and new imperatives.
A cancer diagnosis has the opportunity to be a crash course in everything.
I quoted before from the late great Gilda Radner who said about her cancer: If it wasn't for the downside, everyone would want it.
But what a downside! Let us be honest. It comes with the real risk of intractable pain, increasing disability, bankrupting expenses, unimaginable inconvenience and stolen time, overwhelming fatigue, annoying side effects, unknown fears and of course death too soon, too soon, too soon.
The upside too is amazing. Life becomes purposeful, more focused, more urgent, more timely. The junk melts away. New friends and challenges and interests and opportunities appear. A brave new world. A chance to make a difference, a chance to beat the odds, blaze new trails and drags others with us on the road to, dare. I say it, a cure.
It seems possible now. The accepted wisdom is that the only possible path to cure for CLL is a transplant. Maybe that is changing. My transplant failed, as it does for about half of those who go that route. And it kills and mains too many.
Maybe the ibrutinib or GS1101 or GA101 will buy me and others the time needed for the CLL gurus to perfect the CAR-T or the next winning cocktail to get us to the promised land of no more leukemia, forever.
Much has changed in the seven years since my diagnosis. Then they was no therapy even shown to slow down the disease or add a day to survival. Options were limited to toxic drug combos or the go for broke transplant.
With my nasty mix of 11q deletion, complex karyotype, CD38+, elevated B2M. strongly positive ZAP 70, 100% unmutated, aggressive ITP, and the recent addition of the worst or the worst, 17p del, I have more than beaten the odds.
I should be long gone. But instead, I am feeling stronger than ever with less fatigue, with blood counts near normal and nodes that are getting harder to find.
Seven years out and I am charging ahead to see how I help more CLLers get the best possible care and push the scientists to not take their feet off the accelerator. We aren't there yet and our path is not yet clear, but we are closer and the palliative options are increasingly gentle and effective. This is all good.
Although there are no guarantees and everything could chance in a heartbeat, and moreover, G-d forbid, I don't wish to invite trouble through trumpeting my good fortune, but the truth is that seven years out and my life has never been better and my hopes for all us CLLers have never been higher.
I am so grateful to all of you who follow along here and elsewhere and who share your stories.
The best is yet to come. Please stay the course. Our future is bright.
My granddaughter stands up for the first time and applauds herself. Does it get any better.
I see where President Clinton stole my best line at the Democratic convention.
But I stole it first.
WE ARE ALL IN THIS TOGETHER.