Friday, September 30, 2011

Brooklyn, Here I come

Neither rain or thunder or red eye flights or lack of sleep or my own absent mindedness (forgot to take my meds yesterday for only the second time since my diagnosis- talk about being out of touch with the present) or just general travel fatigue can keep me from the Marriott by the Brooklyn Bridge for the North American Educational Forum on Lymphoma in Brooklyn.

It is the right thing to do, I will sleep a bit on the plane, and should sleep well Saturday night at the hotel. so I push on.

Maybe just maybe, I can get to a vegan poorboy sandwich at Blossoms or something more elegant at Candle 19 in Manhattan

Though it would much easier to just walk down the street to Juniors, Bill Clinton's old favorite, for the most amazing cheesecake. Parish the thought.

I will probably just have a salad at the hotel and eat the nuts and snacks I always bring along to ensure I don't go hungry in the badlands of NYC or Peru. The trials of a vegan voyageur.

The symposium will give me a chance to reconnect with old friends, and reinforce critical treatment information as I move forward.

Plus I am looking to develop a second career as a reporter for other primary care health care providers on the cogent material at these specialty conferences. That could be both fun and important work.

Let me share one last reflection on this needlessly tortured decision.

Everything has a cost/benefit ratio. Everything has unknowns in those ratios. You can spend considerable time analyzing and fact gathering to lower the influence of the unknowns and can insure at addition cost against some of the risks, but neither risk or unknowns can ever be fully eliminated from the equation. While this was a relatively trivial decision, it does reflect my process. Here I measured the potential long term upside clearly outweighed the short term risks and costs. And it will be sweet to see old friends.

Same process on an entirely different scale that lead me to an early transplant. And same way I will decide on the timing of the second one.

Look for me in New York.

Before October is over, I will have ridden a mule to the bottom of the Grand Canyon, hiked vortexes in Sedona, and done another one night stand in Dallas.

And somewhere in there I will catch some shuteye.


North American Educational Forum on Lymphoma in Brooklyn

I have had a tough time deciding about whether to take a red eye to Brooklyn for the LRF (Lymphoma Research Foundation) patient conference just because I am so darn tired. The lymphoma folks always cover CLL/SLL as it is classified as a lymphoma. Confusing at first, but the cancer if of the lymph tissue and lymphocytes as it is in all lymphomas.

This educational forum will not likely present anything I haven't already heard or read, but it will review, update and give a fresh prospective.

They will be some fine speakers, but I have heard them all before, and there will be old friends, but there is always next year.

In other words, it will be worthwhile, but I could skip it and survive.

I chose the redeye to save some money. The hotel is expensive. The airfare isn't cheap. It's a lot of hassle, expense, and stress for one night in NYC.

And I am quite sleep deprived already between work and Jewish holidays and other commitments.

But if I can get a good night's sleep tonight, I think I'll go. I have until noon to cancel my hotel reservation, and still get a refund, so I can't delay the decision much longer.

If I do go, I will report on the meeting here.

I plan to not set my alarm tonight and sleep in. That may mean missing the 2nd day of Rosh Hashanah services. I think G-d would understand. She wants to see me rested and healthy.

Services today were challenging and positive. And the shofar blasts were stirring and a call to action, to heal the world, starting by healing myself.


Wednesday, September 28, 2011

Happy New Year Shanah Tovah

Another year, another shot at redemption, another chance to get it right, another stolen golden moment to count my blessings, and another opportunity to savor the sweetness of living everyday.

Living with or without leukemia is still living and cause enough for celebration.

Shana Tovah.

I wish there were shofar blasts every morning. Clear the mind and lift the soul.

To all those I have failed over the last year, please find it in your hearts to forgive me.

To all those who have been so kind and generous to me over the last year, I am more thankful than you know. You light up my road and make it all so worthwhile.

I move forward, my first year as an orphan, the family patriarch now that my dad is gone. I miss him so much.

But I have a big and growing family of my own, full of love and joy and surprises, and dear friends, old and new, near and far, and rewarding work with good people.

Again I reminded of the words of that tormented master, Reb Nachman of Bratslov. Life is a very narrow bridge. The most important thing is not to be afraid.

Across that very narrow bridge, across the universe. One step at time, one day at a time. Slowly slowly slowly healing the brokenness in me and all the world.

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Monday, September 26, 2011

Home Sweet Home

After a week in Peru, and 4 days in Charm City (Baltimore), I am finally home in southern California.

Home prepared (notice I did not say cooked) raw meals and juices, my own bed and shower and kitchen table.

And my wife and kids (well the kids are a call or Skype away).

Life is sweet.

Trying to decide whether to trek cross country this weekend for a leukemia conference in Brooklyn. I am booked on a red eye to save the considerable expense of an extra night at the very nice NYC conference hotel.

So tired, but I really think it could be a wonderful meeting. Full of new knowledge and old friends.

I am good at the exercise, very good at the diet, nearly perfect at avoiding the toxins, but I stink when it comes to having a healthy sleep pattern.

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Sunday, September 18, 2011

A lazy day

Our bags arrived a few hours after we had left for the magical mythical, mystical, and misty mountain retreat, Macchu Picchu. We now have enough clean clothes to change our attire 3 times a day until we leave. They were waiting for us on our return.

MP is a full 900 meters and the village of Aquas Calientes is 1300 meters lower than Cusco, so the air is richer and it is the beginning of the jungle which offers some amazing and terrifying hikes. We walked along the edge of a cliff in the jungle to the Inca bridge.

MP is a very special place. The Incas knew how to pick a good location, and then maximize its beauty. It is worth the effort and is surprisingly well run.

Back in Cusco late last night, we went out for dinner with some friends who were hiking on the area (Brie and Arash) which was sorta magical too in its own way. Meeting dear friends from SoCal in Cusco.

Today we caught up on sleep and rest and fluids and Peptobismol but not on oxygen. It is less than 70% of what we are used to breathing.

It was great to just sit in the central square and watch the world go by.

In Cusco's main cathedral there is a portrait of a Jesus at the last supper eating the traditional Pascal chinchilla or some say guinea pig. Judas is the spitting image of the deceitful and murderous Pizarro, not that Inca kings were angels by modern standards.

Peru's bloody history is worn on its colorful sleeves everywhere you turn.

It has not easy with no bags, hours on SKYPE with American Airlines, trying to buy replacement clothes and basics that fit average size American males and from someone that could give a receipt, altitude sickness, traveler's tummy, cold hotels, and sore knees. but it has been good, in fact very good to have this special time with my son in a wild and exotic place.

Tomorrow Lima, then home sweet home.

Found myself thinking about my leukemia only once for a few minutes on the trip when during a much need and much welcomed hot shower, I could tell my nodes were growing.

Not bad 5 minutes about CLL in the last 5 days, a minute a day. I like that ratio.


Thursday, September 15, 2011

Good and Bad News from Peru

One of the many advantages of having the winning trifecta of CLL a medical degree and the tendency to envision the catastrophic is that I carry with me medicine for everything.

The high altitude has hit my son much harder that it has hit me. If he can hold down the meds I brought just in the case the other meds we are already taking didn't work, he should start to feel much better.

Than k G-d my emergency meds where not in my checked baggage.

Which brings me to the good news.

Our bag has been found and is on its way to Cuzco! And American Airline has authorized some money to reimburse us for when we buy some warm clothes and other necessities until if arrives.

Now as long as Ben starts to feel stronger, all will be well.

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Wednesday, September 14, 2011

Peru First days highs and lows

Made our connection by 10 minutes in Miami to Lima after a nerve wracking change of our flight to Peru three times, but our bags didn't and are still nowhere to be seen.

Mild altitude sickness, cold (41 degrees in the the Sacred Valley) with no heat in our hotel and no warm clothes (all in the missing bags), very sore knees after miles of walking through the wonderful Inca ruins in Pisac (hiking sticks and the more than 3 oz of Voltaren ointment were in the luggage), hail, our original guide getting stuck in Puna and sending his excellent younger brother, our hotel losing our reservation, not able to get a working SIMS cards for our phone, and almost no sleep for two days now- none of this has stopped us from being thrilled to be here.

Amazing and beautiful and friendly.

Peru has been wonderful, Not easy, but wonderful

Tomorrow should be even better after some sleep and buying new clothes and hiking sticks.


Monday, September 12, 2011

Good news for PERU

Lab tests were great going 17 days between treatments. That is a full 3 days longer than my usual cycle.

Platelets were a wonderful 409,000, Hg was OK at 13.7 and WBC was steady at 6.8. Diff is pending.

All of those are good or very good.

Certainly good enough to travel.

There is always some drama and breath holding when I get my blood results and my IVIG infusion often the day before I am scheduled to I hit the road.

And I am not talking about the 3 pokes to start the IV and the 4th to draw the blood. OUCH! I sure don't want to look like an IV drug user when I arrive at the airport in PERU. Long sleeves for me.

What I am talking about is that more than once I have needed to cancel my trip at the last minute due to a low count. It has taught me to never take anything for granted.

But no need to use my cancellation insurance with the more expensive pre-existing rider this time. Not for a long time. The low dose of cyclosporin seems to be keeping my ITP at bay.

I am grateful and excited.

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Sunday, September 11, 2011

One Small Price of Fear

Instead of clearing my mind and calming my soul and studying my destination, I spent way too much time today and last night strengthening the defenses ... of ... my computer.

Hour and hours of backing up, adding and strengthening my password protection, encrypting all my home files, throwing out stuff to make room on my bulging hard drive to do all this, all completed so that if my computer is stolen in Peru, not only will I be able to recover everything, I will be the only one able to recover everything. The bad guys will not be able to gain access to my data.

This whole process was aggravating, circuitous, inconvenient, distracting, tedious, slow, and very scary at times. Couldn't and wouldn't have done it without my friend, Howard S.

Thanks, I guess.

But is it done.

I would have loved to have spent those dozen hours or so reading about the Incas and the history of Peru.

Am I paranoid? Am a nerd for insisting on bringing my aging MACBOOK with me? Or am I just preparing for the worst?

If you think I am over prepped, you should the number of medications that I am bringing.

And the organic raw vegan snacks.

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Saturday, September 10, 2011

Self blame and memory

This is our new reality.

Knowing that we are hated. That we are always potentially under attack. Sudden and deadly.

The few bad players that ruin it for everyone.

The terrorists that make the hassles of airline travel hardly worth it for a short flight. Easier to drive. It's a now an equation we weight daily. What level of risks? What level of annoyance? How much and how little freedom?

The B cell clone that makes the hassle of blood tests and doctors' visits and infusions and risk avoidance now a necessary part of life. Scheduling travel and work and finances and life itself around my cellular assault.

Some ask why do these hate us? Hate us enough to smash planes into the World Trade center and the Pentagon and the ground.

Wrong question!

Would we dare ask the slave as he approaches the lynching tree what he did to make them hate him?

Would we dare ask the hasid as he enters the death camp what he did to make them hate him?

Yet some of the well meaning among us dare to ask ourselves what we did to make them hate us.

Why do some of us with invaders in our blood and marrow and nodes ask of ourself what we did wrong to invited these unwelcome and pesky house guests. Or worse, have well intentioned friends and family and holistic providers lovingly chide us that the cancer is proof positive of our wanton ways.

I want to scream.

Why are we not more understanding and compassionate with ourselves?

Self deprecating is good for comedy, but not when you facing the battle of your life.

It is important to be humble and willing to learn and accept what role we play in our fates. But it is important to understand the perversity of the enemy you face. As when you encounter a mountain lion in the wild, look big, make eye contact , and don't back down.

Some of this misery is just fate. Just bad luck. Just ill winds. Bad genes and bad dudes. Wrong place at the wrong time.

It has been ten years since 9/11 and six years since my white count of 18,000. Full and fitful years filled with passion and compassion and too much pain.

Yes, indeed we must look inside ourselves to see where we let down our guard, how we loosen our border control, how we got weak. But not with self blame.

We didn't invite in the malignant terrorist bent on the destruction of that is great and crass about America.

We didn't ask the malevolent B cell clone into our our very blood to straighten out our poor choices or past risks.

But they are here, among us.

And we must deal with this new reality.

Soon I will post on how I cope.

One way is living big. Off to Peru in two days.


Friday, September 9, 2011

Remembering 10 and 6 year anniversaries

In two days, it will be the 10 year anniversary of 9/11. Everything changed, It is a new reality for all of us.

On a much smaller personal scale, six years ago yesterday, I got the first message that I had my own internal terrorist attack to deal with it.

Six years ago yesterday I got a CBC back with an elevated white count that turned my life upside down. My absolute lymphocyte count was under 12,000 that day, more than twice normal. Today it is around a heathy 2000.

Those extra monoclonal lymphocytes six years ago changed everything in my life.

It has a wild and wonderful trip.

More later on the good and the bad from living with my new personal reality.

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