Bone marrow Biopsy and aspiration

It was about as painless as having two big bore needles put into your posterior superior iliac crest could be. Dr Kipps was great and the lidocaine worked its magic. Except for the transient but very weird and quite nasty feeling when my marrow was being sucked up into the syringe (I wish this experience on no-one), it was a non-event.

So nonplussed was I by the absence of the usual pain, I left without remember to get my blood drawn until we were 10 miles down the road in Leucadia enjoying a raw organic vegan lunch (wakame salad and a fantastic raw "burger") at the small but purposed raw eatery, Greenery Cafe .

No results on anything yet, but I should have the blood test back by tomorrow. Actually I should have had them today, so I am slightly put off. They are ready in 30 minutes at the most.'

And in typical Kipps fashion, the simple CBC (only 1 vial of blood he told me) turned into 8 with a retic count, a Coombs, chemistries and as those extras for his research.

He is obviously worried about my anemia. So am I. A little.

Kipps found my nodes in my neck have grown a bit, though most reamian small. Still my CLL may soon be demanding more attention. He did say it was OK to shift to MR to image my gut nodes as to avoid radiation exposure. We give up some accuracy, and may need a CT if Campath is part of the plan, but that is not likely soon.

Hopefully, nothing is likely soon.

The most recent results on the exciting breakthrough treatments such as CAL 101 have been more honest, and thus disappointing, but I remain hopeful that the silver bullet for CLL is being tested as I type.

If not ready when I need it, there is always transplant redux.

Still my CLL has been pretty tender and easy to nudge back, and most of my powder is still dry. Plus my counts, except for my very slight anemia, are super, so I have plenty of time to put my finger to the wind and judiciously choose my next crazy course of action.

I have now also waited a week for the path report on whatever is growing on my scalp (Those of us with CLL are experts at growing skin cancers). That too is overdue, but I am in complete denial that there could be any bad news brewing there. I vote for traumatic inflammation.

Now back to the difficult part, the waiting for all these results.

Language

This is verbatim from my friend Arlene on the survey. She is right, of course.

The words used for each choice probably has a bearing on the outcome.

The "gentle treatment" answer was somewhat nuanced and contained a reasonable medical strategy whereas the "aggressive treatment" answer was all metaphor and did not outline a medical reason to proceed.

The gentle treatment answer appears to leave more options open. The thought is that if the Gandhi approach starts to look like it's not going to work, one can then take the other approach, blow war trumpets, load the ammunition, and strike with deadly force.

No results yet on bone marrow biopsy, though Dr. Forman thought they might be back as soon as Thursday.

I always have the irrational worry that the delay means the news is not good. Crazy thinking. I will do better.

Waiting Again

Today is visit the doctors day.

A doctor's appointment for someone close in the morning (all will be well very soon, so no worries), and then my own visit at City of Hope with Dr. Forman.

The visit will lead to a plan, my cure CLL project over the next year.

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.

Waiting for my bone marrow biopsy report

Is there any meaning in the lack of  results? Surely he would rush the good news to me.

I can easily get lost in this crazy thinking. The Talmud teaches that prophecy has been taken from prophets and given to fools and children. However, it does later adds, with typical twisted Talmudic logic, the wise to the prophetic group.

I just emailed Dr. Forman to ask if there any results back yet from my bone marrow biopsy.

In case you are new to my blog, I have a a freight train of trouble waiting for news.

Still I say it is an act of courage and optimism to push for my results.

Would you do the same? Live with the not knowing, or move up the time that the envelope gets torn open?

Of course, as in the rest of life, despite what the devotees of THE SECRET  believe, my writing the email will certainly have no effect on what the reply contains and in all likelihood on when it will arrive.

Yet I know that what I did was brave, but I was so nervous about doing it.

Be still my beating heart

Yesterday I had another bone marrow biopsy. Not too bad. As is my habit, I walk afterward to minimize the after pains. This time it was next to the rain swollen streams of Eaton Canyon, near City of Hope.  I listen as did Siddhartha for the laughter of the brook, loving the wildness of the place so close to the urbanity of Pasadena.

A great escape, but by bedtime, the anxious waiting for the results had begun.

This time I am not trying to stay calm about my chimerism results. Wouldn't it be great if I discovered that I had gone from 0% donor to, well, anything but 0%. That would be super and would make a pretty exciting story. When you're at zero, there is no concern that your level may have fallen in the latest test. It's going to be the same or better, so why worry.

Now my doctor and I are sniffing for the slightest hint of a relapse. The microscopy that can find 1 in 100 cancer cells may be back by the end of the week. The fancier flow cytometry that snoops out 1 in 10,000 may take a week longer. I am expecting good news. I feel well and honestly everyone tells me I look great.

This waiting part is always tough for me. You would think I would be an expert by now. The master of the here and now. 

Instead I have the unhealthy tendency of trying to seize the future instead of the day. I started to ask Dr. Forman one of my what if questions to which he wisely said "Why have a speculative discussion today when we can a specific one in two weeks".

He's right of course, but it means waiting the two weeks.

Between now and then is my CT scan.

My wife and I found another wonderful diversion to rescue me today.

Heard my long time friends and legendary jazzmen, Luther Hughes,  Tom Ranier, Paul Kreibich and Ron Eschete together as H.E.R.K. play some blow all your cares away and forget everything but the sweetness of this G-d given moment kind of music. All this plus I enjoyed a great meal with friends and drifted along with the beat.

It was perfect.

It's all perfect. Or darn close. And I can live with that.

"Tell me why it is hard to make arrangements with yourself" Neil Young

Communication breakdown,

It's always the same,

I'm having a nervous breakdown,

Drive me insane!

Led Zeppelin

What's new you've been asking?

You've heard it before. 

Nothing. Nada. Rien du tout. Bupkahs. 

Stillness is not my strength. 

Add to that a communication breakdown and it makes for a frustrating frozen moment. My insurance authorization for my appointment at UCSD was fumbled on the two yard line. In the fourth quarter. With one second left on the clock.

My scheduled appointment for a second opinion on a second transplant is suddenly on hold after office hours on the day before the appointment, waiting for a last minute paperwork reprieve that would allow me to keep the hard to get chance to see the double agent, Dr. Castro, who moves with grace in both the world of CLL and transplant medicine. A rare man in deed. I need his take on the advisability and timing and risky details of second dose of a stranger's stem cells. Or goosing my immune system with lenolidomide, the princely stepchild of thalidomide. That certainly would be entering unknown territory. Or other options I haven't even considered.

There is still a chance I will get the go ahead tomorrow.

In reality, nothing will be decided until the computer that controls an x-ray unit is used to slice through my gut, and using complex algorithms reconstructs my interior geometry. Moving nodes that are less than a half an inch across to begin with will be scanned for any change.  Not by inches, but by millimeters will my future be decided. That CT scan won't happen for another month.

In Vegas, I would be a card counter. I want all the edge I can get.  I want to know what is knowable. I want some to time to compute the odds and then make my move. 

I should still get the information and time I need. 

I am just not good at waiting.

"Too much information running through my brain" The Police

Engraftment results, the Kings scoring drought, the local fires and smoke (we are fine), student jazz from McGill, analog versus digital music, Hollyweird CME conference, letters of references, appointments with editors and publishers, innovative medical devices, and critical developments on the faulty guidelines of the ACIP (CDC's advisory committee on immunization practice) are all screaming for my immediate attention.

I only have time to thank JC so so much for the great seats to Ducks-Kings game. And it was a surprise treat to see the W family. I've been to two games this year and have not seen the Kings score one goal. How pathetic is that!

More soon, on all of these. Tomorrow is yet another big day. Honestly, I am expecting stability or better, but hoping for a significant uptick in donor cells when I learn my engraftment results.