A Break from CLL: Grandfather and Granddaughter

Is there anything better in the world than having a baby fall asleep in your arms?

Maybe if the baby is your granddaughter.

Another reminder of why I am fighting so hard to stay alive myself and help to let others with CLL enjoy a future full of their own sweet moments.

More on ASH and iwCLL soon, but I was way too busy this last weekend with more important business to fuss about that.

Like rocking my infant granddaughter asleep.

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Personal Travels

With ASCO (AmericanSociety of Clinical Oncology) and EHA (European Hematology Association) upcoming, a significant backlog of abstracts to review, promised synopsis of critical issues, important editorials, and still some videos from ASH, I am going to grab this moment at the airport in Orlando to update my crazy spring.

First the biggest most important news:

My oldest daughter gave birth this weekend to our second beautiful granddaughter. Mother and baby are doing great (if you don't consider the sleep deprivation), and I am flying to Alameda to meet the newest member of our happy growing family. I can’t wait to hold her and smell her and kiss her.

Sydney Lilah

It is being alive for moments such as this that remind me why I fought so hard to travel across the country a year ago leaving the California sunshine for an Ohio winter, uprooting my wife and myself for months, and risking a new unproven therapy to knock back my CLL and ITP. But my calculated gamble has been an unmitigated success, offering me chances to see so much more than I could have dreamed possible. And no sight will be sweeter than my new grandchild.

Now that baby has safely arrived after a very quick and natural labor and delivery, my schedule is a little more solid.

This frantic spurt of travel started at the end of April with my trip to Columbus, Ohio for my treatment. I stayed a few extra days due to scheduled CT scans, an opportunity to tour of the new hospital and Dr. Byrd’s wonderful lab (the highlight was meeting the bright and enthusiastic PHDs, MDs, and other lab staff), meals with Dr. Byrd and other friends, new and old, and an amazing Mark Rothko exhibit at the Columbus art museum.

Rothko

When back home, I had time to catch a hockey game (Go Kings Go) where the Kings beat St Louis in the Stanley Cup playoffs, before driving up to the Bay area to help my then expectant daughter and son-in-law with the toddler. That didn’t stop me from flying to Vancouver, Canada for a few wonderful days of a west coast all boys high school reunion (UTS or University of Toronto Schools) that included kayaking in Deep Cove, a gondola ride to the snow and the grizzly bears at the top of Grouse Mountain, and poignant memories.

Deep Cove, British Columbia

Now I am writing this post from a plane leaving Orlando where I attended a two day primary care medical conference.

Once back in the bay area, I will be driving back to Orange County for a day or two, then onto San Diego for one day for more learning.

Before the next week is over, and after spending time at the office, getting trained on a new EHR (electronic health record) module, and visiting the infusion lab for my life saving IVIG and a routine check-up with my local CLL doc, Dr. Sharma, I will be leaving for five nights in Chicago to cover ASCO with Andrew Schorr and Patient Power. So far Drs. Byrd and Wierda are aboard for interviews and several other familiar faces are very likely. I will also be interviewing experts on other hematological malignancies and on some solid tumors for Patient Power.

Only two days after ASCO, things get real crazy. I will be driving up to Santa Clara to lecture with Dr. Steven Coutre out of Stanford on anemia and MDS (myelodysplastic syndrome), a too common complication of CLL and its treatment. From there, just hours after I finish, I drive to SFO to fly to Stockholm for only three days to share my experience with ibrutinib from a patient’s perspective just before the EHA meeting (European Hematology Association), then rush back to the bay area the day before I leave for Chicago to see my younger daughter, just back from her delayed honeymoon in Spain and Morocco.

After another brief visit with my daughter, son-in-law and the grandkids in Alameda, the drive to SoCal gets me home in time for more doctors’ visits, clinic hours, a local CLL support group, seeing my son Ben off to Stonehenge for the summer solstice with the Druids, all followed by a two days car trip to La Jolla for more medical education conference, this time on heart failure organized by UCSD.

A week earlier, my son, Will is flying to Israel for 10 days, and I hope to arrange a meeting up with my bone marrow donor.

The next weekend I am in Baltimore for more med. ed., and the extra bonus of catching the Max Weber exhibit at the Baltimore Museum of Art.

This is the last year of my CME cycles in Canada and the USA, and I must squeeze in a lot of hours to meet my requirements. Now I have to overload my credits to catch up before the end of June. Poor planning and other priorities lead to this crisscrossing of the country.

July 3, I have been ask to lead a CLL support group for UCSD on their campus in San Diego.

In between, I have scheduling and planning teleconferences and the Stanley Cup Playoffs.

No more travel is scheduled for July until I need to be back in Columbus, Ohio again in the third week, and I am so looking forward to not leaving home for a few weeks.

This frenetic pace is not sustainable or healthy. I nap often at the hotels and on the planes. I wear an N95 mask and gobs of hand sanitizer. I treat myself to the best vegan meals I can find on the road ( which is not saying much) and I always try to see more of the town that I am visiting than the hotel lobby. In Orlando, I hiked though a lush swamp with catfish and egrets and Spanish moss that was just minutes from the silly shopping malls and alligator miniature golf courses near my hotel. No amusement parks for this traveler.

Shingle Trail, Orlando

Then I took a long nap.

I bring my comfort foods (organic raw nuts and fine Japanese green tea), meet old friends, do work that I love, and have a rare opportunity to make a small but meaningful difference in the world.

This schedule was an extraordinary confluence of opportunities and my inability to say no to spread the word about how cancer treatment is changing. I admit there is desperation to all this journeying, but I know my time is limited and I want every moment to matter.

If I was more at peace, perhaps I could sense the gravity and power found in standing still, like a mountain, like a master, but I am still a breezy soul.

Moving Sideways

Usually boring is the best way to be. No bumps in the road. No drama.

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.

Seven Years Ago Today CLL Entered My Life

Seven years ago my wife and I were happily planning the home wedding for my oldest daughter. Now that marriage has given us our number one granddaughter who applauds her own first time success at standing up. Today. It is so good to be alive. Seven years ago, odds were not looking so good that I would reach this day. I am one lucky soul.

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.

Forget for a moment all about CLL and look at my cute granddaughter

I have tried not be a stereotypical grandfather, but I am finally giving into temptation and posting posting an adorable video of my talented 9 month old granddaughter.

We who struggle with disease and its therapies, decisions and trials, highs and lows, do so because we have reasons to live, to put up with crap, to reach into the future.

They are different for all of us. I am blessed to have many motivators in my life.

Here is my youngest one. I especially like how she uses her teeth on the keyboards.

Another boring bone marrow biopsy and aspiration

When asked if I had had this procedure before, I just smiled my yes.

When asked how many times, I didn't know.

Becky, Dr. Kipps' NP was great, the pain was minimal during and after, though my blood pressure did shoot up a bit. I am convinced it more a matter of technique than strength, though I know this experienced oncology nurse worked hard to get the specimen. Thanks to G-d for lidocaine.

You want your bone marrow biopsy to be routine. Results in two weeks. That is the part that is hardest for me.

With no meds for pain, I was well enough to stop at my new favorite raw restaurant, Peace Pies in my old haunt, Leucadia. These guys are amazing and committed. Great introduction to raw food. And I love that old beachy still slightly hippy feeling of that stretch of Pacific Coast Highway.

Back home, after a desperately needed nap, I am back to the grind and cleaning up the house before my wife comes back tomorrow.

Making good progress on my to do list for the CLL but nothing is "completed" yet and life has a way of disrupting my plans. That's OK. It reflects an active engagement with the world.

Though the cat is fine company, I miss my wife who is out of town helping out with our 6 month old granddaughter. Amira's blog is much more more exciting and certainly more fun to look at than mine.

My most brilliant move today was to pick up "to go" a raw organic vegan "tuna sandwich" and a slice of "apple pie" for my dinner, so life is sweet.

A good day. Another ho-hum bone marrow biopsy and drive along the amazing California coast.

You give me reason to live, you give me a reason to live, you give me reason to live!

My daughter and granddaughter in the California Redwoods

Patty and I went on one of our best trip ever. It wasn't exotic China, not romantic Italy, not Zen Japan, not super natural New Zealand, not historic Prague or musical Vienna or friendly OZ, not ancient Israel and Egypt, not the castled United Kingdom, not magical Peru, not the grand Grand Canyon, but gritty occupied Oakland because that's where my daughter, son-in-law, and granddaughter live.

That young lady with the pink bib in the picture is another reason to soldier on.

I have no bucket list. As I have said before, I have way too much joy in each day and way too many things left undone to imagine that a list of the top 10 or top 100 or 1000 checked off would signal it's OK to check out.

But seeing that four month old under the marriage chuppah might be a moment when I can say that I have seen enough.

Nah, make that holding my first great grandchild. I should be in my 90s or close. If I live long enough to see that baby's bat mitzvah, I would be around the century mark.

In any case, CLL would be a remote memory. What a blessing that would be.

But now CLL is front and center. Tomorrow I have my MRI to see if my CLL is trying to launch a sneak attack from inside enemy lines, my mesenteric or gut nodes. If they have grown too big despite another course of rituximab, I need to knock them back to size while I still can. If they become "massive" ( >10 cm) they become harder to kill. In these large niches, they have more supportive infrastructure such as nurse cells and they are just tricker to reach with what ever toxic cocktail I have planned for their last meal.

That means choosing a new treatment strategy that keeps one eye on my ITP, and another on my sleepy bone marrow and my third eye on a future transplant redux- probably my only chance to live long enough to see a fourth generation.

I wish there was another way, but I am not convinced. Kinase inhibitors such as CAL 101 or immunomodulators such as Revlimid might buy some time, but not a cure. They don't promise me another 30 years. Only a second transplant gives me a 50/50 shot at getting really old. But a transplant demands a big price for that shot of redemption and a second transplant demands even more.

I have been catching up on hours and hours of reading about my disease and transplant. CLL remains thankfully a hot research arena. Much is changing fast, but is it fast enough? I doubt it, at least for me and those of us who might need treatment soon.

Those who have followed me on some or part of my six year journey know this is a repetitive loop- my anxiety before a scan or bone marrow biopsy, my cogitation over my next move, my lament about the slow progress and the constricted choices, and my hunger for life.

Thanks for joining me on the trip. The CLL community and others facing similar challenges are among the many gifts in my life

I've got too many reasons to live and one very young, and beautiful new one.