Camping at a 5 Star The Survivor's Package

My wife and I are camping at a 5 star resort in San Diego. No linen, no toiletries, no toilet paper, no light bulbs, no AC, no bed. NADA. Rien du tout.

Just the bare room for $19 a night (normally it is about $200->$300) in this gorgeous golf and spa resort. Check it out: The Ranch Bernardo Inn

We can use all the facilities, and we have a working, if dark and paperless and towel-less WC, and electricity.

So we camp inside the room. Easier than that camping outdoors.

It was a gimmick called the Survivor's Package to drum up business in the recession, and we jumped at it.

I am not sure if I will have internet access (maybe in the lobby) for a few days, so I may not reconnect until after my next doctor's visit, also in San Diego.

Hoping this time away will let me restructure my response to all the personally bad, but not horrible, news of the last few weeks. I desperately need to press my reset button. And remember to pack soap and toilet paper.

Vanity of vanities, all is vanity

Ecclesiastes

A skeptic finds his words canonized despite how they contradict the mainstream rabbinic wisdom, in fact the author's premise belies the whole Mosaic vision of a personal G-d that intervenes in history, a just and merciful G-d who cares about all his creatures.

It is a despairing, cynical almost pagan take on theodicy, and yet it made the cut and today is part of the most widely read book in the world. Makes me proud to be a member of a religion that has such a big tent, that can so tolerate the cynic.

It is traditional to read the scroll in its entirety on Sukkot, the harvest festival, when we reap what we have sewn. Seems fitting.

Rabbi Rachlis in tonight's discussion got it right. The author asks the right questions and throws out the knotty challenges. What he doesn't do is come up the right answer. His answer of despair is not the only response to an unjust, cold and cruel world. Victor Frankl reminds me that we always have the freedom to choose how we respond. In that last freedom there is a joy and a subtle but certain victory over the angst.

Read a bit from Chapter One below or better, read the whole book yourself (it isn't very long) and please share with me your reaction. I would really like that. Honestly. It would be a great comfort. Add a comment here or email me at BkoffmanMD@gmail.com or do both.

I picked this particular section as it hones in on the impotence of my weapon of choice, the intellect in our earthly struggles.

13. And I applied my heart to inquire and to search with wisdom all that was done under the heaven. It is a sore task that God has given to the sons of men with which to occupy themselves.

14. I saw all the deeds that were done under the sun, and behold, everything is vanity and frustration.

15. What is crooked will not be able to be straightened, and what is missing will not be able to be counted.

16. I spoke to myself, saying, "I acquired and increased great wisdom, more than all who were before me over Jerusalem"; and my heart saw much wisdom and knowledge.

17. And I applied my heart to know wisdom and to know madness and folly; I know that this too is a frustration.

18. For in much wisdom is much vexation, and he who increases knowledge, increases pain.

Best to know

The bone marrow biopsy showed 2.8% of the cells were CLL. The three lines of cell growth were adequate including the platelet precursors (megakarocytes) so the platelet problem is a return of my ITP, which is the better of the two possibilities, the other being cancerous shut down of the bone marrow.

So the CLL and the ITP are back in the nodes and in the marrow playing their nasty games with my life, though the blood may still be clean.

Not the news I wanted to hear, but not unexpected. For me it is always better to know the enemy you are dealing with. It certainly makes my present situation more clear. What to come and what to do is less clear.

I am busy tonight with McGill events and projects with my children, and broken electric gates and overdue paperwork, so more later.

The biopsy news is rather cold and stark, and so my response must match.

John Adams

DISNEY HALL

I just bought tickets to Disney Hall to see John Adams conduct John Adams in early December.

We bought 4 cheap seats with a couple of Adam zealots. That means we are behind the orchestra, but facing the baton waving Adams as he leads the musicians in his own creation.

My favorite contemporary composer at my favorite contemporary concert hall with 2 good friends. It doesn't get much better.

If you are not familiar with Adams, here is a taste: http://www.youtube.com/watch?v=RompnEeeP-g&NR=1 He is worth getting to know.

If you have never been to the sculpture = building in downtown LA created by Frank Gehry, a fellow Canadian and rabid hockey fan, use any excuse to go.

For me, it is important to have events to anticipate with joy.

208

That is the number in thousands of platelets I have in the average microliter (10 to the minus 6) of my blood. If my math is right, that a trillion or so platelets coursing through my veins. If platelets were dollars, I could be part of the economic stimulus package

Looks like the IVIG worked, or the bottom was reached, or the fall, now reversing, was just the toxic effects of high dose EGCG.

When I saw the report on the computer screen, the fire engine red coloring for abnormal results was gladly missing. The printout is more prosaic black and white.

Now the trick is to not overreact both to the good and bad news.

Off for a long bike ride and I will go surfing this week for sure. First I need to check the dings on my board and find my old rack. Or maybe I will just rent a board.

Hang gliding? Why not if the winds right.

Dancing

Tomorrow I go for an early morning blood test. Stat. Get the results in 5 minutes. If my platelets have climbed, I simply turn around and drive home.

If they have fallen, I stay for eight hours or more in a infusion chair at the cancer center to receive a second higher dose of IVIG.

5 minutes or 8 hours?

If they are stable, not sure what will happen. Repeat the drama again in a few days?

This is not easy to plan for, mentally or even practically. Do I bring lunch and reading material? Magical thinking (The Promise and other suspect new age foolishness) would say that is inviting a problem by accepting the assumption that I will be staying. A boy scout would say it is simply being prepared. I'll be the tenderfoot boy scout.

The drive to the clinic is not a pleasant one, still full of positive affirmations, despite my skepticism of their impact, and practiced acceptances.

I have danced this dance of uncertainty before. This is not my first dance with falling platelets. I remember my past dances with ALCs and engraftment studies. I have many dances to look forward to. I may be dancing until I can no longer stand on my feet. A dance where a lab test determines my immediate reality and defines the scope of my more distant future. A lab test!

I don't like it one bit. But there are worse places to be pinned. Hey, I am still dancing after all.

Beginning the new Approach

I am planning to write a series of post that deals with how I deal with my recent discouraging news.

I will divide my reaction to the new challenges into three parts of uneven lengths to cover my personal and psychological reconfiguring., my changes in my diet, supplements and other complementary approaches, and finally my new medical approach. Expect much overlap. Expect contradictions and radical changes in mid-course. Don't expect it all to be logical, but expect it to be positive.

Writing it out with help me clarify my thoughts and create, at least for the occasional stolen instant, the fiction of some control.

Failure is not an Option

Here are some lines that I have amplified from a letter I sent to a rediscovered dear friend from 1967.

The last few days have been crazy. Stepping off the shore onto the frozen lake is always full of risks. And if the ice is thin, you better know your route and be light and quick of foot. I am sure I will make the crossing, but I may slip and fall a few times, and I may even shatter the glossy surface and get drenched in the frigid dark waters beneath once or twice. With expert help I will reemerge to move forward gingerly again, but as stated by Gene Kranz, lead flight director for Mission Control for Apollo 13 "Failure is not an option."

Went ice skating today, hence 1/2 of the mixed metaphor.

Pretty crazy stunt to do with dropping platelets, a sore bone marrow biopsy site hardly a day old, and wobbly arthritic knees. I did it anyway for my son's birthday surprise and it was great fun. I'm a Canadian after all, and an ex-leftwinger to boot, eh.

Tomorrow I get blood work again and a low dose of IVig to reverse the downturn in my platelets.

My teleconference went well. My work load is shrinking. I should be able to write more soon.

Double digits

My platelets fell below 100,00o today (OK they were 99,000), but they are continuing to fall to the tune of 10,000 a day. Sounds like the stock market last autumn.

Also had my bone marrow biopsy (this is going hurt he said and he didn't lie), and that will help determine the wisest course.

That said, the fog is a bit thick these days, but the shadows are becoming clearer and I am sensing a narrow precarious but manageable path not just out of the present danger, but onto a freeway that leads to a crotchety old age.

I will get a low dose of of IVIG on Friday to buy some time and more importantly some platelets.

So much to write, but I must prepare for a CME teleconference tomorrow on Sleep-Wake disorders, so please forgive me for my scant posting in these critical moments. I promise I will try to shine a light on these twists and turns very soon.

For now, be assured the game is on, and I still have a few winning tricks up my sleeve.

Drilling down

Bone marrow biopsy tomorrow morning and of course repeat lab at USCD with Dr. Kipps.

Ouch.

Overwhelmed with must dos. Let me connect some dots before I write anymore.

The Trend

Avoid decisions based on a single data point. Look to the trends. Get ahead of the curves. Plan your future.

That's the theory. As if we really have any control.

My platelets are down a bit further: 117,000 today. At this rate of fall, I will need treatment in 7-10 days for my ITP. It is truly all about the platelets.

So until then, I am going to get into the water, go for bike rides, and just enjoy stuff. I will put off the hang gliding lessons though.

Off to the Festival of Arts today.

My plan to snatch victory is hatched. I have time and my general good health and a great team and incredible support. The moves are being scheduled as I post this blog. There is a way out of here. Everything will be fine in the end.

It's the platelets, stupid

My CT findings so long anticipated and so critical in the assessment of where I was and where I was going have been rendered moot by the drop in platelets.

If tomorrow's blood count confirms a downward trend in those critically important hemorrhage stopping cells, then I am surely marching towards a second transplant with just a few detours to get the body ready for the long trip ahead. The speed and the exact route would be yet undetermined. but the endgame is clear.

The platelet count trumps everything.

Tomorrow I will have the new CBC.

Tomorrow, after I finish my very therapeutic deep purging of the old papers and undone projects in my office, I will share my thinking about my new status and my new plans based on those results and the CT. I am surprisingly confident of the ultimate outcome.

Let's hope for a big jump up in the platelets, making all my noodling about them as big waste of time.

Hold on. This could be a wild ride. Or maybe not.

A blast from the past

Now for something completely different.

If you expecting a reflective discourse on the nature of the revealed and the hidden dimensions of disease with today's spying techniques on the body - CT, PCR, PET, MRI, and so on - and how they can shatter the surface calm, you need to wait, it is coming

Today, I share some connection with my younger self and a very special friend from more than 40 years ago.

Would I recognize that naive swimmer and scholar with the world opening before him. Would we be friends? I hope so. I could learn so much from that younger man and his plans to try to change the system from within. His hungry eyes on the prize, the prize of love and joy and the thrill of pushing the limits and winning. I still hear his voice in my ears, but it not the lusty defiant shouts of the expanding universe, the coming of age in the late 60s and 70s, but more the same still quiet voice that spoke to Elijah. Remember, it whispers, remember that it is all about the people. It is all about connections. And now it seems reconnections.

I worry that too many loops are closing, too many snakes are swallowing their tails and their tales, that it portends a personal cataclysm, but my wife and my friend tell me it just the realities of Facebook and being 58 years old. I am again, being overdramatic.

Meanwhile, Tom Robbins is tattooing the secret of life on my thick forehead (Fix these words of mine in your hearts and minds; tie them as symbols on your hands and bind them on your foreheads. Deut 11:18) so I won't forget it again:

EVERYTHING IS CONNECTED

A dear friend from the far away past has dug up these black and whites of me from my buffer days when I was a wide eyed 16 year old, when my worries were different and all was possible.

Thank you. Thank you so much.

Don't feel Much

Don't feel much like doing my exercise, but I added an extra rep. Not easy.

Don't feel much like staying on my strict diet, but will stick with the raw organic vegan plan, say for another 6 months or so.

Don't feel much like walking in nature, but I will make sure I get out and get my sunshine and grounding with the earth.

Don't feel much like meditating, but I will make time to having a quiet mind a higher priority everyday.

Don't feel much like writing, but I did and I will.

CT Results

Nodes are mildly bigger in the neck, axillae, mesentery and groin. Still no single node greater than a little over 2 cm, but they are all mostly bigger.

Didn't take the steroids or Benadryl. No allergic reaction.

More later. I need to let this settle in.

Confirmed Falling Platelets

I repeated my platelet count: 149,000.

So it is down 190,000+ in about two weeks. I am not acutely sick so that is not the cause , nor it is likely my CLL, because that moves more slowly and my ALC is still low, so my old nemesis, ITP is clearly on the diagnostic table.

But there are two other items that need some focus.

First is that it is not worse today than yesterday, so it is not falling off a cliff. Small comfort.

Second: could it be the green tea extract? Not likely, sadly. ECGC, the cancer killer in green tea, is associated with decreased platelet activity, but not with decreased counts. Nevertheless, I will stop could my recent increased dose as see if that helps. I am emailing Dr Neil Kay, the PI on the green tea study to get his take on my new concern.

Not much else I can think of to cause this kind of fall.

My CT scan is moved up to tomorrow, in case I need treatment for falling platelets. Most of those treatments would shrink my nodes and confuse the findings on that important test.

Crunch time.

Platelets falling

This blog was begun long after I had passed though the rocky shores of critically low platelets from the auto-immune destruction by my wayward immune system known by the acronym ITP. It was not a pleasant journey, much worse and far more dangerous than the CLL itself.

When I checked my blood today in preparation for my CT scan I was dismayed to see my platelets had fallen from over 350,000 on July 27 to a low normal 142,000 Aug 12. While that is still a very safe level, it is the sudden fall that makes me bite my nails.

This is even more of a concern because I had IViG on July 16, known to raise platelets for those with ITP.

It could be a lab error, but if it is the beginning of a trend, my party is over and it is time to move with alacrity.

I am trying to stay calm until I get the recheck.

A Mitzvah: Visiting the Sick

Today I am doing something which might surprise you when I tell you that it something I don't do much anymore

I plan to visit a friend in hospital with complications from his transplant for CLL. Make rounds so to speak.

You would figure as a doc, I would round on patents daily. Not that long ago, I would proudly have said that was the case. Not today. A  family doc, outside of a rural setting, is a specialist in the outpatient setting. It is inefficient and costly for us to care for patients on the hospital wards. And if don't use it, you lose it. Would you want a doc who sees a few patients a month caring for you, or one who sees ten new admissions a day? Actually that may not such an easy question to answer.  

True be told, over the last few years, the rounds I made were mostly social and for patient reassurance. I would review the chart, and check all is on course, and maybe explain the likely trajectory of the healing with a little more time than the hospitalists could afford.

Soon after my CLL diagnosis, I stopped taking hospital call. ERs and acute medical wards are no place for a boy like me with a shaky immune system. 

So this trip to the bedside is actually pretty rare for me.  

I do it, not because I am such a great guy (and if the infection risk is high, I'll back out). No, I do it because it is a commandment, a mitzvah that I visit the sick. I do it for my sake. 

I do it because we are all in this together.

To Life, L'Haim

I am swinging back into my more ponderous mood as I face my upcoming  CT scan. It has been almost 6 months since the last one showed  small but definite growth of my mesenteric nodes.

The daily joys of life linger less time in the front of my brain. Instead the small pocket of dread from the back of my head creeps forward to leave a thin but unmistakeable scent of fear in my nostrils.

The unrevealed will soon be exposed.  Will it be a clarion call to action, or a long OHMMM to pause and savor the success?  Will I  scream with joy or will I grit my teeth, prepare my weapons, and climb back in the ring for another round with the dragon?

Or will there be no clarity. Just more questions. 

It is all about the journey after all.

I remain confident with not a palpable node to be found and all normal labs. Surely my CT will confirm what my loudest inner voice tells me. 

I am healthy. 

I am well. 

I am winning the war.

To life

L'Haim.

Looking at Death

Francois De La Rochefoucauld was so right when he said, “Neither the sun nor death can be looked at with a steady eye.” (Thank you Ed K for sharing this)

Maybe that's good? 

Forces us to avert our gaze from the abyss and stare back, wide eyed, into the living moment. 

Forces us to remember the finite nature of the time we have in an infinite world and the need not to waste a moment of it.

I promise to be more upbeat in my next posting. This memorial service and the closing of a 40 year old loop is a heavier anchor than I realized.

Old Friend's Memorial Service

Yesterday, I drove down to San Diego for the memorial service of an old friend I had not seen in about 40 years.

I heard stories of his life in California, a mere 100 miles form my home, that was all new to me.

From what his intimate circle shared, Barry was no longer frozen for me in the blurry images of a group of us rushing to listen to the new Beatles or Allman Brothers albums as soon as they were being released. Now the 20 year old I remember is morphed into the mature and loving man.

I met him because he was the older brother of my first girlfriend from my wilder days in pre-med at McGill in Montreal in the late 60s and early 70s.

Really, I went to reconnect with former love, Bev and her sister Debbie and her husband Peter. 

Though the circumstances were tragic, the meeting was sweet. We did the typical stuff, sharing pictures of our families, and tripping back to some pretty great memories of concerts from that classic rock era. 40 years absence makes for a flood plain of water under the bridge.

Barry's quick demise from cancer, and my own circumstances scream that we never know how much sand is left in our hourglass.

Do not wait to heal old wounds or to forge new or old connections.

Call or email your estranged parents or sibling or old pals. Make the effort. Life is short, but it can be sweet. I will stay in contact with Bev and Deb and will likely meet their families. It will be good.

Barry, I am sorry I waited too long to reconnect with you.

Who are you?

I track the visits on my blogs but have no way of knowing who are the intrepid explorers of my words and occasional photo or artwork as I move deeper into my post transplant world and dare I say post CLL world.

In the last 3 days I have visitors from every continent except Antarctica.

So if you are the lurker from Senegal or Brazil or Cape Town or Hawaii or one of the several who dropped in from India or Australia or across the middle east (Israel, Egypt, Saudi Arabia, Jordan), or from all over Europe, please email me at bkoffmanMD@gmail.com so I can personally thank you each of you.

Hey, if you are from Canada or the east coast or even SoCal and you haven't contacted me yet, please do so. I am interested in hearing your stories.

Comments are nice, but I have no easy way to respond or contact info.

Thanks

Crystal Cove

No, this is not one of those horrific Thomas Kinkade paintings

This is a photo of one of the rundown yet to be rehabbed houses steps from the ocean in Crystal Cove.

The house we stayed in was from the 1930s and was communal with private sleeping rooms and shared kitchens and bath. The decor was fishing nets with the choice flotsam and jetsam that they might have dragged in.

Another reason I love this special place.

The Healing Water of the Pacific at Crystal Cove

I have been swimming and body surfing and boogie boarding in the Pacific for the first time in four years.

The first time since my CLL diagnosis that I stepped into the salt water. Only the second time swimming in all those four years (the first was just a few weeks ago in the swimming hole north of Santa Barbara). I avoid public swimming pools with their toxic mix of chlorine and bacteria.

After four years, my platelets are high enough, my spleen is long gone so no risk of rupture, my energy is climbing, and my immunity is at least partially boosted by my recent IVIG. So unless I run into a great white, or get in over my head with murderous waves, I am good to go.

The waves weren't bad, the water was warm enough if you kept moving, and I had several narly rides.

It was wonderful. Cleansing. Healing. And very much a rush.

No cancer clone has a chance against that kind of primitive tidal energy.

Next I get the  old  dinged up longboard out and do some real surfing.

Won't be able to keep me out of the water now.