"They Tell Me To Do Nothing."

Greg Shroyer introduced this story to me in1985. According to his oft-told tale of Crazy Eddie, the answer to the penultimate question is the title of today's entry in this blog.

The man who gave this answer was in an unusual situation. He had secured a critical and final interview after many years of pursuit of a goal. He was finally facing a panel of psychiatrists for his "Is this guy crazy  enough to get permanent status as a dependent of the State of California" evaluation. If this went well, the man wold receive a monthly "crazy pay" check for the rest of his life. His gardener, housekeeper and friends just South of the border where Eddie actually lived would all be be permanently well funded.

What was that question? It was this; "Mr Crazy Eddie, you hear voices and they talk to you. What do they tell you to do??

And Crazy Eddie found the words form themselves into a perfect koan just as they passed his lips, "They tell me to do nothing!"

They panel was satisfied. Crazy Eddie got his checks every month for the remainder of his life... Maybe Greg will add to the story some time and let us know how that all worked out for Crazy Eddie.

How is that at all related to my situation?

Well; I too had a critical review of my situation on Friday.

I too was keen to reach a satisfactory next step. And we did get there.

So for now; Dr D just wants me to get a new MRI in 3 months. Get off the dexamethasone. Go see him with the MRI to see that the steriod treatment was fully successful.

Really?

Uhmmmm. Well, he ACTUALLY WANTS to biopsy the tissue.

We just agreed that since we cannot find ANY test that says ANYTHING is wrong in my body.

Since there is NO swelling / pressure / pain / squeezing -- it's all gone ... !!!

Then the thing to do is Nothing!     ... and that's what were going to do ...

Tomorrow - A Visit to a Neurosurgeon

Incredibly Good Results
So Far, All we have is "A Really Good Set of Healthy Test Results"

Dr S wants me to talk with Dr D -- who works on parts of the body near nerves -- like my lower spine.

Good idea! Though I feel already like the toothache patient with no pain -- making an appointment to go sit in the chair just to see if we can make it twinge a bit -- just to find out if there is any reason to do some work on the tooth.

What was it that caused the really nasty nerve pain just a month ago? I dunno. The cortico-steriod (dexamethasone) treatment worked. The high dose narcotics (oxycodone) gave me time to let them work.

The biopys samples do not give a clue -- not from the blood cells -- not from the tissue slides.

 The CT scan, the PET scan, the blood tests, the urine tests, they are all negative for signs of myeloma.

The PET scan reveals only a very LOW level of activity right there in my sacrum -- and not ANYWHERE else.

So let's go talk to somebody who could have an idea what it is. Let's hear what he's figured out!

The appointment is tomorrow, Friday, the 26th of March, 2010 at 8:15 AM.

Ciao!

Again! Same Story -- No Conclusive Results

The sample they sent to the lab did not have sufficient tissue for analysis.

Dr S says that is a negative result that is useful to me -- in that we again do NOT have evidence of myeloma.

That's the fourth test that FAILS to deliver ANY evidence that myeloma is attacking me.


And .... (okay a small drum roll would be okay here...) I have been free of pain for over a week. Not even an aspirin for over a week! The dexamethasone has worked like a charm [- though I cannot control my appetite & my belly sticks way out like a pear belly already a week -- but my weight is stable -- it's just that I eat in weird uncontrolled binges -- then couch potato the rest of the time- ] and Dr S says I can pull it down to 2mg 2x day from the 4mg 2x day where it was.

So; what should we do? How much do we care WHAT caused the swelling / inflammation inside the bone? It's not swollen or bulging or pushing on nerves NOW!

Dr S is going to discuss the MRI, the PET/CT, the 2 sets of lab results from the biopsies, the negative/normal M-protein, the low Beta2, the overall excellent blood counts, the relief of negative symptoms & freedom from pain -- with a neurosurgeon, a Dr D [ looks like he has written a bunch of articles on this area - fwiw] & he'll call me once they have a new idea ...

Color me curious...
{the color of curiousity is green --I just found out -- as in the background of this pic from our honeymoon -- }

A New Hole -- Just What I Needed

So the procedure went fine. Enough lidocaine - pain medication that works immediately as soon as he sticks the little needle in -- just like at the dentist - and I didn't feel a thing. Nearly. Well, the surgeon did have to sort of lean on it to get through the tough bit of bone, but a bump in a grocery line would have been more forceful.

The challenge is that he wasn't too satisfied with the stuff he got to come up in to the needle. He kept saying, "Well, I got blood." But he didn't sound satisfied. Then he used a different technique to get what he said would be a 'core'. I guess it was supposed to be like the geologists get from snow, rock, ice, whatever... But he only caught a bit of it. I guess whatever is in there is too slippery to stay stuck inside the tube thing he had.

He backed out and tried a different angle, and then announced he had a bit of a segment at the end, he thought.

Once he was done, he came to me to say that he wasn't sure that the sample he delivered was sufficient to evaluate well enough to learn what about that tissue is causing it to become enlarged and to cause pressure on the nerves that pass around / through that area.

He said that we may need to come back for an open surgical biopsy.

Dr S called me to say the same at the end of the day, and said he'd call tomorrow with the lab results.

... and that's all I have to say about that ...

Wow! No Breakfast is a Drag!

Wow! These PET scan people didn't let up!

I got three calls telling me to be SURE NOT to eat or drink anything after midnight.

What's a PET scan? Here is an image of an animated one  ==>

No Result -- Not Negative & Not Positive -- No Result

The sample couldn't be analyzed. There were no cells there to be counted / analyzed / sorted or viewed.

So I offered to go and do it again. Dr S says that there is something there ... it is not an empty void. He did speak with the interventional radiologist - who said he made sure the labratory technician accepted the sample before he stopped the procedure - and that they felt he was in the right location to obtain a sample of whatever is causing the pressure.

But he also thinks that going back for another biopsy will not result in a sample that can be analyzed. He wants a neurosurgeon to look at the CT and MRI and talk about what else could be in there.

We did blood tests, urine tests and will have results this afternoon.

Tomorrow I go for a PET scan -- it will scan my whole body after they inject a radioisotope that will collect iin places that might have tumors. We did one in 2005 and so we can compare.

Let's see ... because if the urine and blood do NOT have the M-Protein (Multiple Myeloma Protein) showing -- and the BetaII Gammaglobulin (a tracking marker that rises when the body is dealing with myeloma) is NOT rising -- and there are NOT new tumors appearing ... THEN ... it is NOT MYELOMA.

Meanwhile, I am still taking the decadron (dexamethasone) to stimulate my body to fight / reduce the swelling. And Percoset for the pain -- though only 5mg at a time since the pain is not climbing up so fast or so high.

I'll write more when I get news ...

Waiting for Results

About 4 or 5 months ago, I guess, I was trying to find something in my 'filing' system and ran across piles of daily test results and all kinds of paperwork from back in '06 -- mostly from Hackensack University Medical Center, some from Central Jersey Oncology Center. I didn't imagine that I'd get much out of the pile unless I put it into some sort of order and even then it would have had lots of missing information ... anyway .. I threw it all into a bag and it ended up going through our shredder.

Yesterday I put in a call to the folks at Hackensack to ask them if I could just get a copy of my file from them. That would be a good read and would help me get a handle on the actual steps we went through. Depending on what the test results are, we might be looking at another transplant series ... maybe. I just thought it up on my own.

I also left a voice message asking for an appointment this afternoon with my  primary Oncologist - Dr S. Even if results aren't in from the biopsy (they probably will be later today at some point or tomorrow, I guess), we could have a talk about how to deal with the next phase of my low back pain.

I am imagining that we'll have to plan on something more than just direct treatment too -- I mean that I want to add on some physical therapy; plus some active treatment for the nerve pathways -- to treat the area for more than just the myeloma -- I need to plan on getting that area toned up and more fit somehow. So; we could think about it like an orthopedic treatment. For that we probably need to add someone onto the team -- a back specialist I am guessing -- so I will bring that up at my next doctor's appointment too.

Got any ideas for stuff that might help? Give a shout -- here or get ahold of me using any of my other links -- Here: check this out: http://xeesm.com/markjkirk -- I just started using this but it sure looks handy!

Big Test Today - PASS / FAIL -

I am hoping for results early in the afternoon

New Plan / Old Team

We'll go back to Robert Wood Johnson early Monday morning for the biopsy - 8 am -Special Procedures Admitting-- probably home by Noon.

That's Fine
This is a serious financial pain -- if the new team would have stepped up to the plate, we would have 100% coverage from insurance. As it is, we'll pay the first $300 as a deductible, then 20% of the rest.

I think the Hematology/Oncologist there dropped the ball. The radiologist wasn't particularly dynamic either. She dismissed her chances of success right out of hand and sent me home.

The old team won't let that happen, they have more experience with these types of cases -- my own case started the same way 4 years ago -- meaning that the first bone biopsy was completely negative. It was bone from the iliac crest -- the big wavy part of the hip that swings out to the side. My "diagnostic" biopsy in 2005 was done at RWJ from INSIDE the SACRUM. So that's what we're going for again.

Good.

Also; had meant to write a note about what this feeling is like -- having pain in my lower back -- since it's not really like just having a backache. Maybe longer another time, but in a few words --

It Feels Like Some'Thing'

I like to change & shower when I get home from work; put on flannel pajama pants and a short sleeve polo, ankle socks. Last Friday I got upstairs, flipped my tie onto the end of the bed, undid my shirt, opened my belt and felt my back sort of ... ease ... out and had an idea that I had a lump back there if I could just reach back with my left hand, I would feel it.

Well, no. There is no lump. There is no change in anything back there. It's not pink. It's not warm to the touch, There is no sign -- that I could see in the mirror (and that's getting to be quite a feat since turning my belly around away from the mirror takes a few more degrees of turn than it used to) -- that anything is going on.

But I had the distinct feeling like there was.

Nope.

From the Peanut Gallery

What was the gap? I mean between what happened at the new hospital and what will now have to be done at Robert Wood Johnson (RWJ)?

I think that the oncologist didn't get very involved - I found out when she called me just yesterday that she hadn't reviewed my medical history, hadn't understood the site of the problem on my sacrum (she was only told of the site after I was gone and the radiologist had written her report of the newest CT, she said) - the butterfly shaped bone at the base of the spine - so she didn't work AHEAD of time with the interventional radiologist to prepare them to do their job.

She treated me without care. She said point blank that she saw no need to get familiar with my case until the biopsy had been done since if it turned out to be a hematoma (a bruise), or some other non-cancerous issue, "what would have been the reason for me to have wasted my time on that!" She did not, however, withhold her statement that she had already decided to agree with my other oncologist that I needed radiation to reduce the mass and slow the cell growth. She went on to add that she understood that my present circumstances were due to the failure of the treatment I had received up to this point to have worked well enough.

What?!? We were going for a biopsy because an MRI showed a tumor -- within the sacrum. Not a hematoma. I am not receiving ongoing treatment. There have been no tumors or protein scans or blood test results or gamma globulin levels or organ function or bone pain or ANYTHING since my tandem blood stem cell transplant in 2006!

I was CRUISING away from Multiple Myeloma at light speed and didn't think I needed to look back over my shoulder for NOT ONE MINUTE ... (right?!?) 


Well, she is a Dingbat! And we're done with her.


But I am not done crabbing ....! So; here is some more .... Since the dear doctor had already written a medical order for a procedure - an invasive biopsy of the sacrum - she owes me the duty of work required to prepare herself to decide that the procedure is appropriate. Once there, she had the usual professional obligation to carry her understanding and instructions forward to the technical team  - the interventional radiologist - to help ensure the diagnosis would be accurate and useful. [So I mentally called STRIKE "2" and decided I didn't need to wait for the THIRD pitch...]

It came to me that UNTIL we HAVE a diagnosis, radiation is just a WORD -- not one to be thrown around lightly when the patient is ANXIOUSLY CONCERNED that his cancer may have come OUT of REMISSION.... DAMMIT!

So once she started getting wound up; I was already spinning... meaning I got upset with her and told her that I don't trust her. I said that I thought she should have read my medical history, reviewed the 2 MRI, engaged my other oncologist by phone (they did talk, but she didn't get much from it -- he said twice to me that he would HAVE TO talk with the RADIOLIGIST before the procedure -- I failed to ask HIM to ask HER if she was planning the SAME...my mistake?) and worked with the radiologist to get that tissue sample.

This ends in a few lines ... 

Yesterday afternoon, Femi got a phone call from this fine doctor to hear how her favor to Femi had gone badly in her efforts to help me. She told Femi that I had been "shouting" at her that "I don't trust her." And she embarrassed Femi of her incredibly ungrateful / misogynist husband. (I'm just guessing at this characterization since Femi wouldn't really tell me why she was crying after telling me the story of the phone call but Femi did get a suggestion (two names of other hematology/oncologists) for Femi to approach  --  both male doctors.


Well, now I have a new issue to raise in my future psycho-counseling -- my  gender issues. 

Fine. Yeah. this could have gone better... what a jerk I can be sometimes ... color me 'painted into a corner' ... me and my big mouth ... . UGH!.

Monday - Biopsy