The back story

Because my IVIG is no longer keeping my platelets in safe territory, I needed to make a next move real quick.

There may be time in the future to figure out why, but it was now time to outrun the lions, and then later start building the fence.

Good that I had my old fall back, cyclosporin and rituximab to help me get my life and platelets back in control. The platelet data on my spreadsheet from 2007 was like a salve to my weary eyes, a steady healthy climb when I started on both drugs from the red single digit dances with death to the healthy smooth sailing of numbers that were above normal for most, but what is expected post splenectomy.

My platelets were strong and stable for over 3 years until the last few weeks, so I decided to revisit the magic of how I got there.

Remember too that the combo also knocked the feet out from under my CLL, cleaning up my bone marrow and shrinking my nodes.

I had seen this decision coming and had sent out a "what if" email.

Drs. Forman and Miklos and Byrd (whom I have never met, but was kind enough to suggest the combination in a life changing, dare I say, life saving, phone call three years ago) and Sharma (who would be trigger man on any move and who would need to carry the bulk of the burden of all the fast decisions) were all aboard and in agreement. How rare is that in the world of CLL? No word from Kipps, and Furman was not so sure. Treatment by consensus or vote. That is patently crazy.

Truth is that using those two meds was the approach I had noodled out and I asked my gurus if it made sense. Even crazier you say.

I also needed to schedule a CT scan to see the tumor load before the rituximab infusion melts the nodes.

Blessed trouble is I think the cyclosporine is already shrinking the nodes. That is the kind of trouble I like.

Then the unanticipated.

I broke out in a bright red rash yesterday morning that could to all the world be a STOP sign for taking more cyclosporin.

I ignored prudence, risked a severe reaction (don't try this at home, but I did after briefing my wife in the signs of shock) and took more and survived. Later a first class allergist and a dermatologist both informed me the rash culprit was probably the IVig, so I won my gamble.

Much more on that later. I need to sleep before my CT tomorrow, but I promised this update.

Tomorrow is huge. Results of the CT and my flow cytometry.

Taking a necessary risk and a break for poetry

Today I took what I knew was a foolish, but I deemed to be a necessary risk and today I won.

Taking a medicine could have been a fatal gamble. I am still edgy and overwhelmed. Let me sober up from the rush of staring at the void and the void blinked first. Let me wait and tell my story tomorrow. It will be less dramatic in the morning.

Time for a break from death defying antics, and let's hear a poem.

A friend, a fellow traveler, sent this from Portugal, from a balcony overlooking the Atlantic. I am lucky to have such unmet friends in my life.

I also want to share with you my favorite poet C. Cavafy's wonderful "Ithaca" because it so well describes our journeys:

"Hope your road is a long one,

full of adventure, full of discovery

...

as long as you keep your thoughts raised high,

as long as a rare excitement

stirs your spirit and your body.

Laistrygonians, Cyclops,

wild Poseidon - you won't encounter them

unless you bring them along inside your soul,

unless your soul sets them up in front of you..."

She also said "Horizons are important to both of us."

That's the raw truth.

Problem is solved

Or maybe just postponed or bypassed. More later. I need to visit a CLL friend in hospital.

When it rains,.....

It pours.

A rash this morning? Reaction to cyclosporine? Or sesame oil (good for platelets)?

This isn't any fun.

If you need me I will be in the situation room, trying to stem my flow of challenges.

All BP and the prez are dealing with is oil.

More later. Gotta make some decision real soon to sort this out.

CYCLOSPORIN AND RITUXIMAB

CYCLOSPORIN AND RITUXIMAB

That's the plan. The title says it all.

Redux.

Wallop the immune system so I don't destroy my own platelets. Hopefully the combo will also hit the CLL like it did so successfully three years ago. It really should.

Add Septra so I don't die from PCP in the process and maybe add an antifugal.

Watch the BP and renal function. Lots to drink to keeps the kidneys tip top.

This is all doable and pretty simple and usually pretty safe, but will it work? Will it be durable?

The next step is giant. Danger looms closer. That is the nature of this disease.

Know your enemy. Plan ahead. Be prepared. Be on guard. This is my world, again.

The long break from the daily tension was great. Back to work.

32,000

That was my platelet count today.

No way to sugar coat it. This is bad news. To say otherwise, to borrow for my last post would stink up the place with the powerful and obnoxious odor of mendacity.

Before I go into the details of what I see in my road ahead, I need to thank a few people.

The radiologist at St Jude triple booked my CT scan, the lab staff stayed late to redraw my blood (and give me a proud tour of their new facility), Dr. Sharma acted quickly and decisively to get the ball rolling, Dr. Forman weighted in and seconded the plan expeditiously by email, the nurses were all great getting the paperwork aligned, the scheduling staff at the hospital and at the clinic wrought miracles, and my wife was right there for me.

It will all be fine, just different and busier, but fine. Have no doubts. It will all be fine.

No panic, please. No big changes. I am just turning off the cruise control and driving myself, with a lot of help from my friends. I am still heading to a place of a healthy old age. And I still plan to have a hell of a time getting there. No stinking ITP is going to spoil my fun.

Tennessee Williams

Cat on a Hot Tin Roof (1955)

• BIG DADDY: What’s that smell in this room? Didn’t you notice it Brick? Didn’t you notice a powerful and obnoxious odor of mendacity in this room?…There ain’t nothin’ more powerful than the odor of mendacity…You can smell it. It smells like death.

• BRICK: You said it yourself Big Daddy, mendacity is a system we live in.

Just in case you need some help...

Mendacity: A lie, deceit or falsehood.

Patty and I just saw the gripping Huntington Beach Playhouse community production at the central library of this southern pot boiler of a play. Powerful performances. Searing language.

Catch it if you can.

A complete escape that I so needed. Big Daddy screaming at cancer in the middle of such familial dysfunction.

It is hard enough to cope with cancer when you have love. It is hard enough to live when you have the truth.

Tomorrow I get my blood tested again and infused with IVig again.

The truth will out, and I am expecting good news.

Almost two weeks since my last post

It has been almost two weeks since I last had a word to say about my status.

Those who follow me on FaceBook know I have squeezed out a short comment or two, most of which have nothing to do with CLL. I don't tweet too often though.

I could tell you how busy I have been, I could share all the other writing and editing I have been doing, I could detail my painful deconstruction of all my CLL files in what in the end was a vain attempt to impose some order on the paperwork from hell, and I could kvetch about how tired I have been.

None of that would get at the real reason for my missing in action status.

Truth is I was not just up to writing. Bloggers block.

Here's the headlines to catch you up on my latest lab and adventures.

My platelets last week were 131,000. The B2M, a tumor marker is creeping up at glacier pace, and the rest of the lab is pretty much normal. Not bad, but not the usual happy bounce to normal by that time. Hard to know how to react, what to write. It is certainly more than OK, but I was expecting and hoping for better. Next IVig and with it a stat CBC is in 2 days. I will also have a flow cytometry to search for traces of cancer in my peripheral blood. These tests could predict my future, but honestly nothing is predictably predictable.

My four day attendance at a functional medicine conference on cancer in Carlsbad that reopened my eyes to some forgotten possibilities, the speech I gave at a very successful and very emotionally demanding fund raiser for the good people of Be The Match, and Purdue professor, Dr. Kim's reference to my blog in regards to social networking for those with medical needs at a conference in faraway Italy, all deserve significant comment and reflection. Not to mention the tragic loss of the Montreal Canadiens to Philly in the Stanley Cup playoffs.

I will get there. I will do that. But not tonight. This is enough for tonight.

110,000

Out of danger. Platelets up to 110,000 after only 2 days from my last IVig. When they fell to a scary 29,000 in November 2009, they climbed back all the way to 101,000 at 48 hours post infusion on their way up to their healthy height of greater that 200,000.

This time, I am assuming they are on a similar celebratory trajectory.

It is likely that my last IVig just ran out of steam when I stretched it out to day 21, and I need either a higher dose or a shorter interval to be safe.

It also means that my ITP has not burnt out and still needs to be stared down every few weeks. It was a long shot to dream that it might be gone, but it was a sweet and harmless fantasy.

On balance, it is good news. Vigilance is demanded, travel is limited to two weeks jaunts, and my life rolls on while I try and fail to stay Zen calm while riding the CLL roller coaster.

NO

I hate when I get no for an answer.

Not much different from childhood.

No, you can not do the two trials, for two different but very stupid reasons. I don't live close enough for one, for the other because I am on a mild BP med. My blood pressure is great (100/60), but that doesn't matter. You complain how it takes years to get enough volunteers. Huh?

No, you can not attend this cancer conference because you are too late to register. I had to wait to get OK from a few people, but by then the conference was full. A full conference? Can't they add a chair in the big ballroom? Don't they want my money?

No, you can not go three weeks between IVig because your platelets start to crash. 54,000 today, down a full 190,000 from when I got the infusion. Not long ago, I had gone 19 days with no problem, but my attempt to reach for a 21 day interval, a full three weeks between having to face the reality of my CLL/ITP by spending a day in an infusion chair, caused a drop to this lower worrisome level. 54,000 is still very safe with no spontaneous bleeding risk, but for how long? Would it have been in the red zone , the single digits again if I had waited even a few more days? That is not a place I want to revisit.

What does it mean?

Could mean nothing. I had a much lower drop in the fall that was just an aberration.

Could mean I simply need to keep the intervals shorter between treatments. No biggie.

Could mean the disease is picking up steam. That's bad.

The working plan is to shorten the interval back to 14-17 days, check my blood in a week, do a flow cytometry in two weeks to check for cancer in the blood - I also have too many atypical lymphocyte- and just see what the trend is for my platelet and atypical lymphocyte counts before getting too panicked. This is all subject to change, depending on the next set of blood results.

It has been a frustrating week, and I don't feel much like writing.

Thinking Transplant?

The great folks at Be the Match have a pretty new resource.

It is a bit hard to find on their web page, so you can click here to find yourself where you need to be to see if you have potential donors lurking out there

It won't do you much good if you arrive without knowing your HLA typing, and honestly you need to know a little about the whole matching process, but the site has a fine FAQ and holds your hand in understanding what the results do and don't mean.

If your number of potential matches is low or zero, don't panic - there are people being added to the registry every day, and there are other registries. Remember my blessed donor was found through Ezer Mizion halfway across the world.

Most of you, G-d willing will never need this service, but nearly all of you can be on the other side - can have a chance to save a life, to be a donor.

Please get swabbed. Please give if you can.

A man I never met, Alan Cohen died because no donor was found. His sister spoke emotionally about his need and his plight at the same event where I met my donor in Manhattan. The video on the site is from that same emotional night.

Despite bringing in 35,000 more donors, no match was found, and he died before the end of the year. Leukemia can be a cruel master.

I am the lucky one from that night. I am still here, still going. I must make a difference.

John Donne got it right:

Each man's death diminishes me, / For I am involved in mankind

So did Ben Lee:

We are are in this together.

Thanks. Help if you can. You will glad you did.

Giving Back through clinical trials

As we all know, sometimes the ongoing day to day struggles with an "incurable" cancer can be overwhelming and depressing.

In response I am trying to get out of myself with the volunteer work for BE THE MATCH and Ezer Mizion .

Now I am volunteering to help with research. Will I get anything out of it? I sure hope so, but my best positive results may be just knowing that I helped further understanding of how we react when we are hit with the unexpected.. The research is not about curing, but coping.

It must be enough for now to share that I am putting my name out there as a lab rat or a data point. When I know more about the process, I will share details if that doesn't breach protocol.