Walking (again)

This time I just walked shirtless along the shoreline. Warm sunny California and I am not dreaming. Not thinking much either. 

Soon I will start packing for Baltimore and Chicago. Leaving tomorrow early morning. Gone more than home. I will happy to stay put for a long stretch.

Mobtown isn't much on vegan food. The Windy City has some great choices and at least two fine raw establishments (and I am not taking sushi or oysters).

Saw Dr. Sharma today. Will wait 6 months on CT if Forman buys in, and my disease behaves.

Walking (three) and a letter from a friend

Today the walk at sunset was on a blustery gray day.  Cold for California. On shore breeze that blows out the watery and mental waves.

Before I left here is an exchange from a friend I have know since I was 15 which is a long time ago.

He wrote the following in response to my walking (two) post:

Sounds wise.

 

So, when you stop focussing so much on CLL, what will you be doing differently? How will Patti, your kids and your closest friends know that this sea change has occurred?

Here's my reply:

Good question. Excellent question.

I am not sure. I will probably not spend any less time reading about CLL and transplant, but it will carry less personal urgency. As a result, my conversations and actions should be more about everything except CLL. It is really Patty that feels the bulk of the impact of my mood changes and any cognitive restructuring.

I will still be working with my CLL support group, and answering cancer emails and phone calls. I will still be responding to the questions and concerns of friends that often lead my contact with them. My connection with my kids are way too broad and deep, so the CLL is just a grain of sand in the grease of our complex relations. I don't think the CLL is much of an impediment even now to our closeness.

Also I will still be focussing on the disease when I have doctor's visits, lab work, and CLL conferences.

CLL will be gobbling up less on my life, and so I will be back to work, writing more (about survival), and just enjoying my life. Less looking over my shoulder, which should have a subtle effect on those around me.

Instead of being the gorilla in the room that no-one is acknowledging, maybe now it is a trained chimp.

Thanks. Be well

Brian

Walking (two)

It is not always easy to move into the present.

That is what Dr. Rai is suggesting. 

He is firmly pushing me to LIVE, and forget about the gut nodes, until I have symptoms. Then move hard and fast. But until then, get a life. Heck, I have normal blood work, normal marrow, and no palpable nodes. I would pass a thorough insurance physical, unless they did a CT. So why not enjoy this reprieve, this remission? Why force the game before I need to?

That is a sea change. Its implications are becoming clearer to me walking along the shoreline, aside the ever changing, ever constant sea. It would mean that I would no longer be preemptive. It says to me to stop planning the next three steps. It asks me not to be hypervigilant. It asks me to forget the CLL, until when or if I get a wake up call.

Can I do that? Can I do what Kabat Zinn suggests: meditate, act and be aware?  Can I move into the moment? Can I let go?

Time will tell.

"Time is not a line, but a series of now points."  -Taisen Deshimaru

So true. So hard.

Walking

In Gotham, I walked to organic juice bar, walked to the vegan pizza stand, walked to organic cafe and sandwich shop, and of course, walked for hours in Central Park. I even walked to the drug store to buy mole skin, because my foot was sore from all that pounding of pavement.

In the Steel City, I walked along the Allegheny River past the Roberto Clemente Bridge to cross on the identical 1920s suspension bridge a few block down in this city of bridges. This one was named for a native son who made being famous for 15 minutes famous, namely Andy Warhol. I walked through the seven story museum dedicated to his art and his business and his self reported highest achievement: Art Business. 

In the OC, I drive every where. I walk on the beach to exercise and clear my head. Very different.

Next week I will walk in Mob Town and the Windy City.

Then I get to be home for awhile.

My rough thoughts

This is a rough draft of my notes to myself (and my wife), unedited and uncut to give you a sense of what goes on in my head as I try to sort out the best moves with this crazy thing called CLL.

First what do the nodes mean?

I have two growing nodes in my gut, maybe more. Other nodes are "plumper"

My CT scan shows definite growth. But is it the CLL?

Could it be nothing? Castro said it might be not important and Rai thinks it still might be fibrotic tissue that could grow.

Rai seemed to indicate the lack of any other nodes was particularly critical. At least he asked about it several times and examined me himself. Castro though that all the nodes should grow at once in CLL So does Kipps. Not Tam or Keating.

Steve Forman and the two radiologists say they are evidence of relapse. They offer nothing else to explain the change other than CLL on its way back.

Rick Furman goes in a different direction. He thinks my nodes are growing too fast for CLL and it is important to rule out PTLD, before any cytotoxic treatment. He said my disease is nodal. Acting like a lymphoma.

 

The next issue is the reason for the profound change in my nodes and for my bone marrow becoming and staying MRD negative after the transplant.

Castro and Rai think the T cells may have been a factor, though Rai also suspects that the chemo was definitive. He seemed to waver.

Steve Forman gave me a definite no to the transplant being any factor in my remission.It is all chemo effect. Rick Furman agrees saying that I couldn’t have formed T cells in the time the graft was aboard.

BTW, quoting Rai:” Losing the graft is bad, but it is not a death sentence” Another quote: “ I have gotten to this point remarkably unscathed” Forman:  “The news is good: You did get a complete remission (with the conditioning from transplant)”

 

Next monitoring, testing And the PTLD question.

Steve Forman wants to treat but not too soon and not too late. Not sure his definition of either point, except that the present is too soon. He plans to follow me with CT scans every 3 months for now and slightly less frequent BMB. That could all change after the next tests in June or July. Uninterested in other markers. Also said would treat like any other CLL, when it is time to treat, which is a bit different.

Castro would wait longer on the CT: 4-6 months. Also wants to track using CLU test. Forman does not trust CLU to make a treatment decision.

Rick Furman says B2M is of no use in my case and my CoH cytogenetics are suspect due to the fact they are stimulated tests and don’t capture the CLL cells. Prefers FISH.

Rick Furman wants a work-up for PTLD including EBV PCR (VCA?), monoclonal gammapathy?, T and B cells counts and ratio, mono-spot, peripheral blood gene rearrangement, CD4/CD8 counts, and others. Would biopsy before FRC or similar treatment, even if nodes continued to grow massively. Still could be PTLD. Dr. Furman thinks my CLL is behaving like a lymphoma.

PTLD didn’t come up with the radiologists, Steve Forman, or Castro. Or BTW with Keating or Tam or the German who did study on CT or any of the ASH crowd.

Rai says there is no tests on the blood that are certain for PTLD and besides this is not behaving like PTLD. No systemic symptoms. Would avoid biopsy, too risky and besides I might treat what I find when it is not needed. Rai: “If the biopsy doesn’t kill you, the treatment might”.

Rai said I should be tested less. CT in 2 years. No BMB needed.

 

So the big questions: When to treat and how?

Steve Forman is pretty clear, as mentioned above. When ready, he would do FCR, followed by what Rick Furman calls a “midi” transplant: Melphalan-Flu, hopefully from the same donor (which is unusual).

Rick Furman wants to connect with Dr. David Maloney out of the Hutch and get his take on a DLI. He is not big on transplants, but seeing as I have already had one and done well, then let’s get the most out of it.  He says he doesn’t know about the whole DLI issue and aplastic anemia that Steve Forman raised.

He would do nothing now or Lenalidomide 5 mg. They are doing a trial using Lenalidomide alternating with Thalidomide. Same action, but different toxicities. Thinks it might help GVL and is great for CLL. (BTW he says never stop the acyclovir due to risk of zoster) Test including biopsy before any treatment except Lenalidomide, which he says is so benign. Better treatments in the next few years, so hold off. Not keen on redo or any transplant.

Castro is still keen on the DLI, just not yet. Says it is never too late for DLI. Not worried about aplastic anemia. Not sure the nodes mean anything. Might consider Bendamustine.

Rai would wait until I was symptomatic. Would not test. Treat when B symptoms only, then treat hard Worried I might develop MDS which is very hard to treat with more therapy or a second transplant

Doesn’t like Lenalidomide. Too new, not sure how to use. Risk of getting T cells involved in tumor flare. Dismissive of any treatment, and especially mentioned Bexar and Zevilin as I am a candidate for both with a clean marrow, and they would wipe out the nodes, whatever they are, but they have risks too. He said" Let someone else worry about the nodes".

Kipps like Rick Furman, is biased against transplant. I haven't seen him since December, but he did not recommend treatment then and did not suggest any specific therapy when the time came. He is not keen on CTs and want to rely on his palpation of my nodes and discussed the radiation risk from CT scans.

All sharp caring doctors.

So the way I see it as of today March 25, 2009:

Back to watch and wait. Stop the CT scans every 3 months. Wait for any symptoms.(Maybe recheck in 6-12 months)

Here’s why.

I wanted a DLI. Dr Steve Forman said no despite my mixed chimerism as I was in complete remission MRD negative, so why take the risk.

We were watching carefully to see if I started to relapse; then time to pull the trigger on the DLI.

What happened is that the remission lasted longer than the donor cells. By the time I had relapsed and by Dr. Forman’s evaluation, needed a DLI, my donor cells were down to 0% and it was too late (again according to Dr. Forman).

I am not sure of the rationale to continue with the frequent CT scans.

The downside:

I could miss PTLD or even RT. Possible, but not likely.

My CLL could become more aggressive and harder to get a second complete remission. Recent data suggests that is important for transplant success.

My donor could not be available. The longer I wait, the more likely he won't be in a position to help again. I have only heard the one time from him.

I might have developed co-morbidities that would increase the risk of a second transplant or make it much more risky. I doubt it. I am pretty healthy, but you never know the future. I have sure learned that lesson.

Insurance or government enforced cost savings may make it more difficult to get the second transplant.

The upside:

Fewer CT scans and the radiation risk.

Less worry.

Possibly several long years of remission.

Better treatments. Experience with Bendamustine and Lenolidamide is growing. Humax CD will be approved pretty soon.

Better transplant protocols. The protocol for transplants are evolving. Even the PICC lines are better that 6 months ago.

Truth is that it likely won’t make that much if any difference when we start treatment as to the outcome of treatment.

It is the last one that really tips my hand. At least for now.

JFK T5

Jet Blue has a lovely new terminal next to the beautiful old untouchable and unused TWA terminal. So 60s. So optimistic. So ready to take flight.

So with the new terminal's free Wi-Fi, I am writing to say I am on my way home, with the clear message from Dr. Rai to not sweat the nodes. Let someone else do the worrying. No CT for 2 years. Wait for symptoms.

More from the west coast, later.

A raw and vegan food tour of NYC

This post should give you a sense of what is really important in my life. 

Forget the CLL docs. Forget MOMA or the MET.

Let's talk food.

Had a highlight dinner at Pure Food and Wine.

All raw, vegan and organic. Magical. New taste experiences in the starters and the entrees. WOW. The raw dessert were transformative. Raw chocolate coconut "ice creme"  Very pricey, but very special. The picture above is one of their raw dairy-free organic deserts.  My new favorite restaurant, but I need a  bigger paycheck or a smaller mortgage to eat there again.

Visited an old standby: Zen Palate. Faux meats and vegan sushi. Still good tastes and lovely presentation, but vegan food and I have changed so much since I first ate there about a dozen years ago, and they haven't.

Candle 79 was amazing. Few raw choices, but what was available was colorful, powerful and delicous, and the cooked organic entrees were bursting with flavor. Amazing food. This is a great restaurant.

Bonobo's is fresh and fun and raw and much more affordable. The kind of raw food we make at home, but not quite as good.

Viva Pizza is walking distance to my daughter's. Good vegan and vegetarian pizzas. All organic. All tasty.

Even closer is the organic Juice Generation. Very nice to have those green options, unlike the bottled crap that is so sweet from the dominant apple juice. They also make organic (cooked) soups and sell raw snacks.

The Green Bean Cafe is on the upper east side (don't I sound like a native) is a tiny informal place with creative vegan choices and very few raw options (which were very good) just a few blocks from my doctor's appointment.  Simple food. We may go back tomorrow. 

I am getting hungry.

New York, New York

A ray of hope:

Dr. Furman thinks my nodes might be from reactivation of the ubiquitous mono virus (EBV), a common post transplant complication (PTLD).

Wouldn't that be nice? To feel like a teenager again, worried about the "kissing disease".

More later. 

Danny Boy

Be prepared to have your heart broken as St Patty's Day draws to an end.

ttp://www.facebook.com/ext/share.php?sid=57214545204&h=dQSfJ&u=nS1Mv&ref=nf

Part of the price of CLL

Robert is in the hospital starting his OFAR treatments to clean up his nodes and marrow before transplant.

He is missing his young family already.

I am extending my trip to NYC from 2 days to almost a week to fit the schedule of two CLL doctors whose opinions may and may not make a difference in what happens next. It is not like buying an album. (Do they still sell albums? Do my kids even know what an album is? ) You don't know what you are getting until you pay for it, and my insurance  pays for nothing out of state.

I am already missing my simple raw vegan food and my dogs and cat.

Since the transplant, this is the first time I have been more than a few hours from home. Half my bag is "what if" meds.

But I do get to see my beautiful and smart daughter and Samson,the wondercat. Of course the thrills of walking the streets of Manhattan, and the museums and Central Park never wane.

I will lecture to several hundred doctors on Saturday  about migraines My chance to catch up with old friends in the medical education business. I missed all last season. It would have been hard to lecture wearing a N95 mask, though the bald look was pretty hip. I love to teach, and I might see if I can segue from CLL and transplant to migraine in my introduction.

Yet I remain gloomy and hyper-vigilant about the trip. I have a strange foreboding. Maybe it is because I feel my health is at a tipping point, and travel is stress I can't easily tolerate. Maybe it is because of the shift of schedule with Dr. Rai throwing me off balance and pushing me to question what I  am looking for and what price am I willing to pay for my consultations. Maybe it is because I won't be able to visit Robert in hospital.

Maybe I am growing too comfortable at home. I am sure that I will be much much better when I have boarded the plane, and will be great when I see the Manhattan skyline again.

Keep it simple, stupid

I have arranged to stay one extra night in New York City and will see Dr Rai one day later.

Not only was this the easiest path, it was also the only way my wife can be there to help me recall and record all the details. I need a witness. I am not the best listener.

It was not the cheapest move.

Less hassle means more expense: The fees for changing the flight date, the additional extra cost for the flight, and the joys of giving up our window and aisle seat with an empty seat between us, for 2 middle seats in different rows.

My daughter is stuck with us for one more night, as she gives up her bed for her parents in her small Manhattan studio apartment to sleep on the sofa with Samson, the wonder cat

It feels familiar and comforting at some level to be fussing over travel plans instead of CT scans.

The best laid plans

Dr. Kanti Rai's office called to cancel my appointment in New York next week. His travel plans changed.

And so will mine now. The trip to NYC is locked in unless I want to shell out usury fees for the privilege of flying out a different day. This disabled doc is doing his best to help the airline sector in these rough time, but I have my limits.

Instead I am scrambling to reschedule an appointment while I am out east in to lecture in Pittsburgh or Baltimore. I am looking at trains and planes. It is not easy. It is not cheap. It is not fun. And it is not restful.

But it is not an option to not do it.

The present plan is fly to Baltimore on Wednesday night, leave by train for NYC, then onto Long Island Thursday morning, see Dr Rai on Long Island Thursday afternoon, take the Long Island Railroad back to Penn station to take Amtrak back to Baltimore that evening to be ready to lecture the next morning, leave that afternoon to fly to Chicago to lecture the next morning, then fly home that night.

I am exhausted just typing it. 

I think flying to NYC a day before Pittsburgh is a better plan, if he is available. That means I leave New York on Monday and come back on Thursday.

Crazy, but hey I have options and the energy to at least plan it. And this is a trivial problem that time and money can remedy.

That is not true for all my battles. Having leukemia gives me perspective.

"There must be a pony in here somewhere"

How do you laugh when you have received bad news?

The fact is that you don't.  Unless you are crazy, which may not be crazy if you have cancer.

If it is true that: "Time is not a line, but a series of now points."  -Taisen Deshimaruv, then it must also be true that when we are ready, and not a moment before, we need to leave that moment behind and move on to the next and the next and the next.

And there are always next and next and next, until the very very end. Until the last breath.

I can be certain if we are well enough to read (or in my case, the slightly more arduous task to compose) this post, we all have more than a few breaths left in us.

By all means we must set aside some "now points" to fuss and worry. For me, that includes hours of research and preparation.

But with all those millions of unused moments, I like to watch a Marx Brothers' movie, or mine the hidden comic aspects of this wild adventure and figure out how to share them.

Having cancer is intense and invasive, but it is not all encompassing.

Want to know what's all encompassing? What grabs your body and shakes it up and won't let it go until it is good and ready.

A belly laugh is all encompassing.

Constant Comment

You must read the eloquent and heartfelt comments on my last post.

Please remember to email me at bkoffmanMD@gmail.com if you want me to respond.

To my friend who is a fellow amputee, having, like me, lost his 11 q arm (chromosome) in the CLL mine fields, and who also has growing nodes, let me suggest that there may be ways to flush out the cancer cells from where the sweet "nurse cells" are keeping them safe from all the poison arrows we can hurdle in their direction.  With AMD 310, or Cytoxan or GM-CSF we may be able evict those no goods that just want to live forever in a nice warm gut node while eating us out of house and home. With coaxing, we might get them out into the blood stream where they must take their medicine like a cell with no resuscitation from their posse. Out in the open, they will be dropping quicker than the value of a share in Madoff's hedge fund.  

I think MDACC has a study using GM-CSF  and R.  I am planning to research it. 

Two less legs to stand on

Through the kindness of my friend Wanda, and her connection with a well regarded and kind hearted radiologist, I had my CT scans reviewed.

He confirmed that the originally radiologists were unfortunately correct in their call. What they saw was indeed mesenteric nodes, not some aberrant loop of bowel. In fact, they may have been conservative in their measurements of the growth.

There is no longer any doubt that there is clear progression between December, 08 and February, 09. Furthermore, there is clear progression between September, 08 and December, 08.

It is no longer tenable to believe that these shadows on the CT scan might not be nodes. Three radiologists all agree. A rare event indeed. (I am still sending CDs of my images to a radiologist friend in Paris to get a French take on my mesentery. There are, after all, the experts on all things digestif)

Moreover, there are really no other likely explanations for the nodes growth other than a relapse of the CLL.

This is what I already knew, and didn't want to fully admit. SH-T! (That was my first reaction to the CT findings)

Now that I put those dreams away for good, I plan for my new dreams and my new reality.

I now know what must be done. 

I must stop and collect my thoughts and recharge my spirit. I must regroup. 

I must plan a sensible alternative therapy in the hopes of fashioning an unexpected reversal by plying nutritional levers that most western doctors neglect. In the meantime, I am on a organic raw green diet. Pretty intense.

I must shut up and listen to the upcoming expert opinions in New York as Dr. Kanti Rai and Dr. Rick Furman weigh in on my next move. 

I must hold back from acting on the voice screaming in my ear: What are you waiting for? Why aren't you attacking while the enemy is weak?

If the New York CLL gurus give me cause to pause, I must listen. 

If on the other hand, they see as I do, that this mutant train may be picking up momentum,  I must push Dr. Steven Forman to blow up the bridges pretty soon. Choosing the right explosives and when and where to put the charges will be the information I must bring home from the east coast.

I must be OK with letting go of these burdens so I can enjoy the next 6- 12 weeks as this all comes together.

I must get more rest and sunshine.

I must be gentle with all these "musts"  for the sake of myself, my family, friends, and physicians.

Purim

Purim is a wonderful holiday when the world is turned on its head, authority is overthrown, the powerless peasantry triumph over the kingly nobility.

It is a time of reversals, of radical shifts in fortune, and drunken joy in celebration.

May the master of time and space consort with the misguided cells in the bodies of those now struggling to regain health,  and point them in a new direction. 

A triumph of health over the tyranny of illness.

If I drank. I would drink to that!

Haircut and timelines

Until this weekend, I hadn't had a haircut in nearly a year. I am lecturing in Manhattan and I thought the iconic absent minded professor look was not the note I wanted to strike. I left a bit of the curl in the bangs. What do think?

A little more than three year and half years ago, the stubborn lumps I had noticed at my hairline convinced me to get blood work. It would should show the high lymphocyte count, the tell tale sign of chronic lymphocytic leukemia. A month later, the diagnosis was confirmed with flow cytometry.

I have now lived about half the expected life expectancy for some one with my type of cancer. But as we know, statistics are for groups, not individuals.

A little more than two and half  years ago I noticed the spontaneous bruising and red spots that signaled my ITP. It almost killed me four or five times. Those scary days are happily far behind me.

Eight months I had my transplant. About three months ago, it became clear I had lost the graft.

Eleven days ago, I saw the CT images that foretold I will doing the graft dance again.

Life goes on.

Canaries in a Cat Scan

I have already talked with all my kids, so here's the news, again in the form of a gently edited letter to protect the identity of the recipient.

Details, commentary, the  expert opinions, and the path ahead will follow soon

Dear Friend,

Well, I am not waiting for clarity or good news or even a sense of direction to write again.

My bone marrow biopsy was perfect. Not only am I cancer free down to the last drop, but back to normal. My blood tests are all boring (boring is good in my line of work).

Then the CT scan had to gunk up the works. One of the privileges of being a doc, is that I get to see the images as the radiologist (he like being call rad) studies the shadows made by my insides. Like the shamans reading chicken entrails, but hopefully with a better batting average

At first it looked OK, then there were two suspicious nodes in my gut, but not so definite that a second quick scan might add more info, which showed that it was actually only a knuckle of bowel and all is well, except that with a third look and a second pair of eyes they really are nodes after all. What a roller coaster ride in real time. The biggest node is only 2.2 cm x 1.7 cm. Barely pathological, but clearly growing. Just two 2 stupid nodes are bigger now than on the images from Dec 1 last year. The glands in the armpits, chest, pelvis, groin, and even all the other mesenteric nodes are stable or shrinking.

But the rain's gotta start at some corner. Those two mesenteric nodes are my canaries in a coal mine.

I have left the land of remission and entered the land of relapse. Or at least my toes are through the door. There is still a sliver of a chance that these aren't yellow canaries but actually are red herrings. Pray for me that I am already cured, but my will is being tested.

I am still coming to terms with this all means. Certainly more chapters in my book.

Hopefully the leukemia gurus will have answers, but I think I already know what they will say. Redo the transplant, with a bigger hammer. Bummer. I feel like a bad schoolboy: Brian, you will do this over and over again until you get it right.

Well, at least I have choices and the energy to pursue them.  And with a clean marrow, much time to weight my options.

Some good news:

My son Will was juried into the very competitive Laguna Festival of Arts. At 20 he may be the youngest artist ever accepted.

Our two ton sculpture finally made it into our front yard after years in storage. The house feels more grounded. Now yours isn’t the only house with a playful entrance.

Patty and I are tickled about scoring tickets to hear Leonard Cohen in San Diego. He sure delivers his songs on the NPR podcast from New York. Check out http://www.npr.org/templates/story/story.php?storyId=101034642

Be well.

Brian

Letter to a friend at the beginning of February, 2009

I wrote this before I had any recent results. It is minimally edited to protect the recipient's identity.

Captures a moment in time. Seems like prehistoric time.

Here goes:

Dear Friend,

Seems my pattern is to wait too long to write you in the hopes of sending mail filled with only great news.

No such luck. I have both good and bad results.

Truth be told, my life remains full of hairpin turns, made in the fog, on icy roads, while listening to Leonard Cohen. But I am still on the road.

Let me catch you up.

As you may recall, the hematopoietic stem cell (bone marrow) transplant went off without a hitch on Canada Day, July 1, 2008. Unbelievably, only three weeks later I was sent home. No transfusions. No IV feedings. Except for a few storms of nausea and vomiting, bone deep fatigue, and the loss of my hair, it was scary how easy it was.

Turns out too easy. My dysfunctional “host” immune system that nearly killed me a few times in 2007-2008, somehow managed, despite the onslaught of big time chemo, to fight on well enough to “protect“ me from what was to be my life saving foreign graft. It turns out that with all my vegan ways and meditation and weight training, I was too damn healthy, and rejected the bloody stem cell transplant that was meant to cure me.

Which means I will likely have to do the whole tortuous process again. This time with a bigger hammer (read stronger chemo, read more time crawling on the floor and hugging the toilet). Without a newly installed immune system, the risk of relapse is very high.

Or maybe not. The great news is that on my last tests, I was 100% cancer free. Occasionally those who reject the transplant, also reject the cancer. Like throwing out the baby with the bathwater. I may be cured and just not know it.

A CT scan and bone marrow biopsy later this month will determine if I am heading for the redo, or back to work.

My “host” immunity may have thwarted my plans for a peaceful transition of power with the goal of my new donor’s cells taking up residence in my executive branch and running the show, but it is not yet strong enough for me to return to the world of sick people that was my workplace as a family doctor. I am hoping to return to the office after the flu season if I get my doctors' OK.

In the meantime, to fill my time with meaning, I have been writing. My blog http://bkoffman.blogspot.com has had about 55,000 hits and Purdue University has proposed a study using my site. My readers have encouraged me to make a book from what I have learned and written about. It feels right.

The book will be a narrative non-fiction with the working title: The Difficult Patient.The subtitle for now is: How a Contrarian Attitude Saved My Life and Might Save Yours.

It is an anti-inspirational comic tale about how to demand and get a recut and reshuffle if you don’t like the hand you’ve been dealt. It celebrates brokenness and chides forbearance.

For me writing is demanding. I know dry science writing, but this is a entering a whole new world. In a universe full of agents and publishers, I am arming myself for the upcoming battles. Fighting for one’s art is nice work compared to fighting for one’s life.

Patty and I have not traveled much due to my health, but I am going to NYC in March to lecture, maybe meet some agents, and get some expert opinions on what to do next about my cancer and my book. My mask came off in November.

In April, I am scheduled to do stand up comedy to introduce the keynote speaker at an International Leukemia/Lymphoma Conference in Niagara Falls, Canada.

My son, Will, the artist, is back from four months in Italy and is busy with his fine art and illustration. My son, Ben, is showing his latest film about the orbiting Spitzer infra-red telescope at a local film festival, my daughter, Heather in NYC is writing the bar, and my oldest daughter and son-law, Rachael and Nick, who you met, are traveling around the world on a scholarship studying the architecture of American military bases and how they effect the surrounding communities. Very sweet. They’re in Hawaii this week.

I will send you a shorter note when I get my CT and biopsy results and map out my next move.

Be well. Stay in touch.

 

Brian