Radiation Placebo May Be Effective

I guess I commented earlier that I cannot tell whether or not I am actually getting radiation. And I am pretty sure that I am getting real radiation treatments. Actually, I think I felt something touching inside my bones when I was inside the machine last week!

But if they told me it was all in my head, I couldn't prove otherwise. I just lay down on this stainless steel table. The Operator uncovers my tattoos and lines me up with the red laser lights so I will be in the place the machine expects me to be. They leave the room and let this huge 12 inch thick door slide shut. They say they are going to create a CT Scan that will show them how close I am to being in absolutely in the right spot. Then they come back and make sub-millimeter adjustments using hand adjustments on the table. The instant they let go of the table they usually run out of the room and stay gone for about 7 minutes. I have to lay totally still from the very first moment I am in there so I can't really see whether they leave the room or not. If they stay, they are pretty good at keeping quite, because I never hear them.

Anyway; during that 7 minutes or so, the machine makes all kinds silly sounding slapping and clapping and buzzing and humming sounds that change location -- but always coming out from somewhere around the edge of the big donut that surrounds me.

If it's a placebo, then fine. Whatever. Because I am feeling better.

Yeah! I haven't felt pain higher than a 6 on my 10 point scale since the very first night of radiation. And that, my friends, is Cool. Way Cool!

So I still take an enormous amount of pain medication. But it is a smaller enormous than last week -- down from three times a day to two times a day. {Mike told me that the pill I take is the biggest one that you can get. And he should know!} All I need is a few more days at this level and I will ask to go another step forward. I mean; I want to stop taking pain medication ASAP -- but it has had a month to get friendly with my brain and body. So we'll taper it off to avoid creating some kind of withdrawal reaction, I'm pretty sure.

So; I guess it's not a trick. They are using real radiation, right?

LIVESTRONG Day 1

Have you seen the yellow armbands? They are from LIVESTRONG -- Lance Armstrong's foundation for folks "experiencing cancer."
 
The organization he put together came up with a program in cooperation with some of the YMCA around the United States.
 
They studied what happens to people while they are getting diagnosed and treated for cancer. They recognized that we slow down and move less. And dealing with treatments and our bodies reactions to those treatments is a serious challenge.
 
So they took a general approach and suggest a basic approach:
Move a bit - Do something to raise your heart rate - Pick some cardio stimulating activity.
Exert yourself - Do something that makes your muscles work a bit - Lift or Pull or Push something
Stretch Out - Just reach out and see what it feels like to let your body explore its complete range of movement - Just try to touch the sky and just try to touch your toes!
 

They did it in a good way -- and they do not charge us for participating. We can join a 12 week course - meeting twice a week - with a written record of our starting levels to compare to what we reach in three months.

And the people are really upbeat, so it makes it almost fun to be there. {maybe if I was already fit it would be fun, but I am not so it was actually kind of like hard work}

I'll be going to the twice weekly meetings. Since I still do not drive everywhere, I will have work that out with someone. But it will certainly help me get back to my regular life -- of that I am sure.

Radiation Treatments My Way

In the past 10 days, I started radiation therapy for the tumor in my sacrum. And an interesting change has happened in how people talk with me and the questions they ask and how much they talk with me. I wonder why that is?

Does radiation make my condition more predictable | understandable | less exciting | less scary?

Folks had been asking me all about what was known about my diagnosis. They encouraged me to describe the tests and the meaning of test results. And how were the new results same | different | worse/better than my previous | other regular people's? It was dizzying trying to learn all about the process of discovering, diagnosing and beginning treatment for a second fight with Multiple Myeloma. It gave me something important to do -- to be the investigator and the learner and the explainer.

It doesn't feel like anybody needs that for this part.

It's quieter around me now. My pain and symptoms are settled down into a steady grind. Without the support of hard-core scandal-made-famous medication, I wouldn't be able to endure the waiting for the relief promised by the radiation treatment. But I do have them and I have nearly daily contact with my medical team. They're doing much much more than saving my life right now. They are helping me to make my body peaceful and robust.

The forty pounds I gained while taking dexamethasone in Spring this year are all gone. I wear the clothes I did last year at the same time, not the ones two sizes larger anymore. Folks who see me say I look like I am my old self again. I do. Probably even better if you ask Femi. Whenever she looks my way, I feel the eyes of my wife on me. I look in her eyes and see her admiration of me. What a gift!

Thank you all for your prayers and thoughts. Every prayer and every time you tell me you are praying for me you pass along an energy that is lifting me up. I am grateful and blessed by you.

Could you please look on the right of this page and 'Follow' me? When you do that, each of the new messages will come straight to your email.

Getting There and Home Again

Sometimes we realize that we just have to ask for help. We don't usually do that. We manage on our own. But this time, we know we need to let people know we need a hand.

My doctor has said that though I could drive he has two reasons that make it a bad idea:
1. The amount of pain killers I need right now is very high. So I feel okay when the dosage is correct, but I am not really okay to be behind the wheel.
2. Sitting in the driver's seat is a bad position for my back. Even though the wound from my surgery is very nearly totally healed, the position creates even more pressure on those nerves.

What the doctor said is all true, and it makes a real problem for us that we cannot solve alone. That's because the next step in my treatment for my cancer is for me to get Radiation Treatment. The radiation machine is called a Tomograph. I lay down and they make sure that I am in exactly the same position every time. {They actually made four dot tattoos on me to use as markers to line me up next time} Then they send the rays in according to the plan for that day. My Doctor and his specialists have been designing the plan for where to send the radiation and how much to send. That plan could be ready for me as soon as Wednesday this week. Then we will know what they believe it will take to reduce the size of the tumor. If it is smaller then it will stop putting pressure on those nerves. Once that gets done, the pain will stop. We hope and pray.

The basic outline for the plan has already been set:
Every weekday (Monday through Friday)
For at least three weeks (they may add three more; to make a total of six weeks)
At 155 State Street in Hackensack.

Here is what the place looks like:

View Larger Map

We tested the drive on a very bad weather day that had a lot of traffic when we went for my simulation examination. Today I calculated the time it takes from the time I leave home until the time I am back at home, it takes about 2 1/2 hours each day. Not more.

That's because the ride is not a long one (35-40 minutes one way) and the traffic is about average for this part of New Jersey. Here is the actual route we drove to get there for my simulation exam.


View Larger Map

What we hope to find is someone or a small group of drivers with their own car(s) to pick me up, wait for me and bring me home each day.

If you want to call me here is my phone number: (908) 621-1206

Please feel free to pass this along to others who could help.

We could pay a small amount. Certainly we will pay for the tolls and fuel.

It's Not Like They Show In The Movies!

I saw it myself - maybe you did too - actually almost all the adventure or action movies do it now. All you have to do is walk through this machine - like a doorway, but it doesn't have walls all the way around it. Then in about a minute or so, they can see exactly 'you'

They had a lot of news about it earlier this year. One company made this machine that could take a picture of you that was so realistic, all the reporters who saw it said it was looking at a completely nude person. And there was a Discovery Channel program that showed the same thing too.

Because of all of those really cool and really entertaining shows, nearly everybody believes that it only takes about 22 seconds to take a totally accurate picture of your body.

Then why do I have to plan on lying totally still (they said I could breathe -- just gently) for ONE WHOLE HOUR so they can make a picture of just one little part of me?

They need me to lay still inside a CT scanner. Those are really accurate! Then they are going to take that three dimensional picture and make a plan on how to shoot radiation blasts at the tissue all inside my sacrum to make it shrink down, all the way down; I think.

But again; all those movies like, "Honey, I Shrunk The Kids" make that happen in about 9 seconds. And that includes the whole total person. Gee Whiz!

So I guess I have to wake up, smell the coffee, Get Real, Man! and Get My Head Out Of The Clouds! Real life stuff is not what they do in the movies.

And nobody wants to come and watch this, anyway.

What Is Going On In Here!?! -- I step out for a moment, come right back in ... and What's This?!???

I can hardly recognize what's happened around here in the past few weeks. I am certainly overdue for an update.

Okay!!! Way, Way Overdue...

It's hard to think of where to begin really. Where were we?

Facets, right? Well. They're still there, (I wrote earlier about "facet joints" that are a part of everyone's skeleton and sometimes the target of nicely effective spinal pain treatment.) I will definitely re-visit some of those salacious details and wrap up that part of the story || {tip for those who know I write 'long' and would like to know how far ahead to skip can skip to the next time you see "One of These":

"One of These"

and we'll be back into the details part again  {end of my tip}  ||  We got all ready for a third epidural. That meant that the anesthesiologist got a little financially cautious and asked his buddy if his buddy's office would file for a 'pre-certification' and any possibility that they would not be pre-obligated to pay for the procedure would be eliminated. Basically my doc wanted to be sure he'd get paid. Okay; fine. Good idea, really...
   Except until the moment when the insurance company only managed to give the nicely typed and properly -though admittedly "pro-forma" request for a pre-certification -- this first on the beaches ~ infantry-man document of our modern day bureaucratic skirmish -- got wiped out in less than 5 seconds of review [probably thanks to the recent "Getting Things Done" training class my insurance processing front office began using with great vigor since they were told that if they didn't get the rejection rate of pre-certifications over 60% by the end of the summer, it was already a 'guilded in gold' & 'known by everybody' secret that not less than 10% of the Pre-Cert department would lose their jobs] number of only the very very lightest of a very light once over.

   Oh here comes some more juicy information that is being skipped by those still looking further down the page for a teeny/tiny clock. Here is where I tell you about information I got from other conversations with certifiably knowledgeable & likely even owning a diploma or two in the area they will be addressing in my little story here. I'll not forget that you might appreciate a bit of background / side conversation between me and "My" surgeon here, too. Yeah; he's the one who is still waiting in the wings for his two and a half hours of fame - So; He said that pro-forma requests get denied 'all the time' and that my anesthesiologists' office would likely immediately appeal the denial and due to the severity of my pain and the highly specific procedure the anesthesiologist was following to ensure that an epidural into the facet joints was certainly a useful approach and had a good likelihood of reducing my pain -- would get a fast and judicious approval post appeal. {I'll just catch my breath for a moment here}



Okay; What's more, I did my own telephone calling to our centuries old and highly profitable insurance company. They gave it to me straight between the eyes - by phone {you see how efficient and cost savings oriented they are and all that} of course - that since I myself had given them an answer to a question that the percentage of relief I was experiencing subsequent to the prior injections was far, too far below their standard evaluation guideline for allowing another such dangerous and expensive procedure to proceed particularly in light of the the well understood and commonly known fact that the prior two treatments, shared a certain characteristic with the third that made a denial ever so much more than appropriate; it was even in my best interest to do what they could within the limits of their good offices even to the limits of the law perhaps, to keep my physicians from repeating a third, completely identical in every way, injection.

Wow; I don't know whether it was more impressive that my insurance expert was able to squeeze all of that information out of their mouth  or that they held all of that information in their head in the first place. Remarkable. Anyway; Before I began to ask whether they would discuss with me the issue of how identical the injections had been, I spent a while trying to get the number out of them for the amount of relief that would have been sufficient on a going forward basis. Though they did not want to tell me, they found I was persistent so they did tell me. Here is what I learned: My insurance company's guidelines are to see better than 50% pain relief from each of the preceding injections would be required before a subsequent injection would be endorsed. I wondered to myself if a third would ever make it pass review. The first injection would have to deliver at least 50% decrease in pain. The following would have to deliver a 50% decrease just as the first. And I realized why advanced math is taught in primary school.

Fortunately we did not discuss that much. In just a few minutes of further conversation, the insurance person and I were getting along so very well, I was considering asking them over for coffee and a bit of guidance on how to better proceed.



Before we could discuss that the fellow said that I would almost certainly get an immediate reversal - IF - the Appeal explained that the two prior epidurals had targeted two "different" locations and that the third was certain to be going for an entirely new location (I was at that point assured that my earlier blog post on Facets was NOT referenced in any of the pre-certification material delivered in advance of this, our potentially third epidural injection).

It seems though that there may not have even been any appeal at all.

We went into the hospital and got a new and fresh MRI of the areas including where the pain had been coming from in that sacral area. Femi and I ensured that copies of all those MRI images - now from August and the earlier ones from March were delivered along with the radiologists' interpretations to our anesthesiologists, our neurosurgeon and dear old Dr S who introduced me to the surgeon, Dr D.

I didn't notice any Batlight that night, but keep in mind that the pain I have does still require a heaping handful of hefty narcotics several times a day. Femi was on emotional pins and needles too, but she's never admitted to seeing any Batlight in our neighborhood anyway. And I might have been distracted anyway. I could only have guessed that they'd all been talking together sometime that night or first thing, early in the morning.

None of those fellows had been too eager to tried too hard to get the appeal I needed. But as soon as they saw a clear road to letting the surgeon go in, they all stood clearly back. Surgery got a quick and absolute "Yes" from all my involved physicians. Dr D was on the phone and we got a date for surgery set up pretty fast.

So on Thursday, August the 24th, I got a hemilaminectomy of the  L5-S1 root joint and the S1-S2 root joint with the goal of releasing pressure from the S1 and S2 nerve roots tightly tucked up in the narrow spaces there. Femi was there the whole time, but I came out of Recovery very slowly -- they really had trouble managing my pain after the procedure -- We started surgery at 8:30 am and got me to my room only about 4:00 pm. That's awfully slow really.

When the Operating Room gave us a 2 1/2 hour allowance in their schedule, they also added, though reservedly, a preliminary approval to go home. That was something I was very interested to achieve -- though  there had to be a few "IFs."  #1:  IF I could walk to the toilet, (#2) sit down/stand up from it and give the plumbing appliance (#3) meaningful usage -- I'd be enjoying a ride home. Too bad I bombed (or failed to bomb -- depending on the precise use I was supposed to make of the appliance) the (#3) durned test. Oh well, you can hardly imagine what a view you get for that kind of money -- Oh what a view. Wow. Though I might be exaggerating a bit again. I needed quite a lot of those pain pills and I might not have been too clear on how nice those lodgings really were. You can ask Femi if you want.

I Didn't Even Know I Have Facets!

As it turns out, everybody has facets. No; not the kind diamonds and precious stones have and this is not a fancy way of referring to other "sides" of my personality. Uh uh. They are on the bones of the spine where the bones are joined. So it is a common name for that part -- usually referred to as a facet joint. I didn't know that!


The idea came up after Dr L observed the results of the second epidural he gave me. Unintentionally, I have become a bit of a challenging patient. See, I find it difficult to clearly remember the level of the pain, the location of the pain, my activity / diet / mood prior to the onset of the pain when Dr L asks me about it. {Okay; so I am exaggerating -- he doesn't ask about food or mood -- I was just trying to make it easier to make an excuse for forgetting.} But he really asks for details.

And he is tricky too!

After a few questions in a row, he'll ask another question which is almost the same as an earlier question but phrased a bit differently. When my answers haven't been consistent, he reminds me of my earlier answer and asks me which is more correct. Aiy!

It's not that I am trying to mislead him; not at all. It's just a challenge to recall the specific details he is asking. The good thing is that he is diligent and eventually gets me to feel I have remembered and confident that I am giving him the best information I possibly can. And from what I describe about the location of the pain, he believes arthritis in my facet joints could be causing the nerves to get irritated. Check the illustration above -- it shows exactly what he's talking about. [Click the picture to go to Hastings Chiropractic where I found the illustration. They have lots more information on facet joints and the way they are known to be involved in back pain]


There you go... Isn't that just interesting?! Well, it is to me and as long as it helps us make progress with this next injection -- Count me in! Probably the insurance company will provide written pre-certification and we can go for it again sometime next week.

Keep your fingers crossed & drop me a line (comment) so I know you're out there pulling for me!

- Mark

We're Going For Lucky #3

The results are not everything they could have been. We did not get total relief from the pain. We got a bit of relief though. There is nearly no pain in my keister (my fanny) but it still sends signals that hit me in that very same spot, then run down to the muscle in the middle of the back of my left leg like microscopic drag racers burnin' up the tracks!

As long as I take the medication Dr L has prescribed on a regular schedule, I am fine -- no racing allowed. But if I let it go too long once the pain starts rising up, then pushing it back down takes a lot longer. And before the meds can shut down the nitro-fueled funny cars again I end up feeling pretty awful for a while.

Rather than try to get the timing of the meds just right, we are going to go for another epidural. There is a third spot that might shut down the races for a longer period of time -- not permanently, but hopefully for months and months. We're going to take that shot on Friday.

Where Does It Hurt? There? How 'bout there? Is that the spot?!?

Laying face down on the operating table with nothing on besides my smile, I tried to answer. My Doctor was moving his finger around and pressing down. He needed more information to best understand how to proceed and really challenging. Each touch seemed the same. Well, almost. It was kind of stressful.

No doubt every answer was changing his concept of where to place the needle. Dr K was working with him to work out the positioning. Getting this right was critical -- to them & me!

Maybe if there was no percoset already working to block out the pain it would have been easier. That was allowed -- the Doctor told me to go ahead and take pain medication in the morning. Too bad. I wanted to be more accurate, but didn't feel like I was able to perceive the differences between the different spots he was touching as he asked, "Is it stronger here? How about here?"

He got the information he needed before Nurse A slipped an IV into the vein on the back of my hand, taped it down and Dr Pete popped in some light anesthesia then we were off to the races.

Dr L must have deadened the area of skin above the crack in my butt (Hey! That is where the epidural injection goes in; Okay?) with some lidocaine. Then he used the fluoroscope - live action x-ray machine - to work out the placement of the epidural needle. In a couple minutes, he settled on the first location. When he sent in the first dose, it felt like a tiny hot balloon was being inflated under my skin. The heat only lasted a short time, I think. Time was become a bit uncertain because Dr Pete kept playing around with the anesthesia going into my hand through the IV line. Not enough to make me sleepy, but it was like a layer of cotton was wrapped all around me for a while there.

He worked out a couple more spots to inject and then we were done. Just like that. No fuss, no muss and we were done.

The folks in the Recovery area all wished me the best and Dr L and Dr Pete and Dr K had a serious conversation about the placement of the injection and their prognosis for my treatment so that Femi could hear it directly from them. Then back up to my room in the Day Stay unit.

One of the regular uses of an epidural is to anesthetize the lower part of the body for surgery or childbirth. No baby was going to come popping out of me, but they did a serious job of making my legs go to sleep. But I didn't really appreciate that until I was fully dressed and ready to go home.

Everything felt normal, but the floor just seemed to be much further away than before. So standing was no problem, but taking steps was hard. When the foot reached the floor, it felt like jello or something.

That was when we asked for a wheel chair to get me to the car. 

Hey! What is that Big Needle For?

Hey! That sucker looks pretty big. Are you going to stick that into me?!?

Uh, Yeah! Duh...

The procedure is called an Epidural Steroid Injection and it means that medicine and pain reliever go into me near the nerves that are sending the pain signals. The idea is to reduce the swelling that is causing the nerves to get pinched and to turn off the signal sending nerves for a while to give them some rest.

Once the anti-swelling medicine (cortisone, usually) has stopped working and the pain reliever has stopped relieving, the hope is that the body has taken over and eliminated the cause of the swelling by healing and there is no more pain that needs relieving.

Well, that is the hope.

Tomorrow I go in for a treatment by Dr L and we'll expect the best results possible. Big Needle And All.

Well, maybe we can treat it like a bad back...

The next thing we are going to do is ... treat it like a bad back.

Uhm; sorry... I need to mention that I have pain again in the same area. It starts like pressure in the area of the sacrum along with a feeling like my flesh is being shredded to bits when I shift hips while driving. After it has settled down for a while, the maximus glutiamous (probably not the real spelling of 'butt' in Latin, but there you go...) on the left side will start aching. And cramps in the left thigh start if I hold off on pain medication for too long.

So I am taking percoset 5/325 a few times a day. They work perfectly and that makes me think I am crazy for having thought that I had pain. Since the give me perfect relief / work so well, I get the idea that it's all in my head anyway. What a nasty merry-go-round this is for my mind. Really!

Back to where I started in the title; Dr S remarked that the MRIs do show clear degeneration of my spinal discs and also of the vertebral structures. It is fair to project that the pain is coming from good old fashioned bumping and grinding of spine against the nerves down there. I asked Dr D if he saw enough in the MRI images to support that idea. He did. And he suggested that we use an advanced nerve tracing diagnostic procedure known as EMG to correlate my pain with a nerve we would find by process of elimination -- poke around until we found the one that was just like the pain I already have... That should be fun.

Dr D said that a beneficial effect could be gained by simply treating the pain like a bad back pain. Ask a pain management specialist to inject steroids and high tech anesthetics into the area and see if we can stimulate healing     / shut down the pain signals in a short period of time.

If the injections don't work; go for the EMG and/or the open biopsy of the sacrum to root out the cause if it is still unresolved.

Is any of this blather making sense?

Next week I'll get the injections -- Dr L will be in charge.

Happy 4th Second Birthday To Me ....

It is remarkable and wonderful to have 4 year old blood cruising around inside this 47 year old body of mine. The folks who stored my blood cells / gave me the chemo to stop the out-of-control ones / put my own stem blood cells back and nursed me until I was back on my feet again => They call a day like today for a person who did what I did ... A Birthday.

{It just happens to also be my brother Steve's real birthday!}

Kind of a miracle to be completely free of any sign of the degenerate blood cells that went bezerk five or six years ago. The damage that they caused to my bones may still be somehow discovered, but it's not affecting me!

Let's All Raise A Glass!
Let's All Raise A Cheer!
Another Year Has Passed And We're All Still Here!

May God Bless Us All
With More Of All The Best!

[ Oh And More Of The Same Will Be Just Fine By Me! ]

Neuropathy Is A Pain

That's not a complaint. It is a description. The heels of my feet have gone to sleep. That's neuropathy [ nu-rop-a-thi ].

It comes from being on the dexamethasone for a while. (Dr S says "not so") So I did a clever thing and did not take it yesterday morning. After all, my dosage is all the way down to 1/2 tablet just in the morning. And I called my doctor - Dr S - to check in and make sure that would be okay.

If he didn't think that was cool, I could just pop the half tab in and be back on schedule, right.

Well a nasty grinding headache kicked in around 9:15 am and Dr S didn't call. So I got on the phone and got to speak with Dr R after hours who told me to take the half & call Dr S in the morning.

My heels were awake -- they got to feel nice and lively all the time my head was ready to pop off the end of my neck all day long. About 20 minutes after taking the dexamethasone, the heels started buzzing and then just went back to sleep. And the headache stopped -- just faded right away...

WoW! Drug Interactions Can Be Interesting!

"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

So What Was That All About?

Well, nothing happened. Oh, we got there -- despite the 10 inches of new snow. Unploughed snow that had starting to blow around really good by 6:30 AM when we pulled out of the driveway -- But they didn't do any biopsy. Oh; the hospital was ready for me. They got me arm-banded, dis-robed, out of my shoes and onto a tidy nice bed in Day Stay Hospital. It was actually pretty nice & welcoming and comfy. And all the regular hospital people had come to work through the same snow we had & they were pretty cheerful and even friendly.

They had me order the breakfast that was waiting for me when I got back to the room - Cheerios with strawberry yogurt and apple juice. Coffee with 3 cream for Femi.

It wasn't even very long before they hoisted me onto a rolling bed and gave me an elevator ride downstairs so I could meet the nice radiology technician, Danny who was hoping nobody else would show up because the weather outside was so bad and he wouldn't mind a light day. Then I met the Radiologist (big 'R' -- maybe MD, I guess) and she started guessing at my medical history and why it was that a biopsy of the type prescribed might be appropriate. She guessed first that my sacrum had detiorated further and we were looking for the extent of the invasion into my bone.

I let her guess again, since she was on a roll. She asked the second question so fast, I would have had to be pretty quick to slip a word in edgewise anyway. And she proposed that we were going to do the biopsy to establish a baseline for biophosphate treatment (chemicals that are linked with regeneration of bone mass).

But she must have drawn a breath - or I just decided to be snotty - and I asked her if I should just let her keep asking me questions until she hit on it by chance. "But it could take a while." I continued, " because the answer to your first questions are, No and No. Would it help if I put you in the picture a bit about my medical history and what my understanding is about why I am here with you today?"

I can't imagine how that endeared me to her, but she did ask me to go ahead. And I did -- I gave her the highlights:
In 2005, I was first diagnosed with Multiple Myeloma with only a protein assay -- no sign of mailignant cells in the regular bone biopsy -- no other bloodwork abnormalities (except a low red blood cell count).
Only after a guided biopsy of my sacrum did we find absolute evidence of multiple myeloma.
I have been 4 years without any symptoms after a double autologous blood stem cell transplant.
New symptoms indicate a re-occurrance of the problem.
Pain relievers do not adequately relieve the pain.
Steriods (dexamethasone) were started 2 days prior and may be giving some relief.

And I concluded, "I would like, please, a biopsy of the enlarged area of my sacrum to determine if it contains malignant cells."

She said fine, we would start.

They did the first scan. She read it and then came to tell me; "Well, that bone is too tough for me to penetrate with the biopsy needles we use here. To reach that area would require a different type of biopsy needle to auger into the area. We don't ever use that type here. If I were to attempt to get a sample from you, I do not think that I would succeed and you would only get a negative result. And that would not be helpful to you."

So we trundled me back to my lovely almost-tidy bed, ate breakfast and drove home through the partially plowed, still really snowy, really slippery roads.

Got any hints??
What was I doing there? We are going back to my former oncologist. He said that if we get him the CT film he'll review it with his (big 'R') Radiologist and work out a way to get the biopsy done.

I guess I should be glad they didn't do anything.

I spent the rest of the weekend with my feet up. Steady intake of apple juice, Percoset, dexamethasone and plenty of warm home-cooked meals. And time with Oscar and Femi to just relax and rest. We even celebrated a birthday party, congratulated Mahlona and Noel on their pregnancy announcement, Tim & Taylor (soon to be big brother and sister) had a great time with Oscar and his newest birthday presents.

And I feel much better! Neat, huh?!?

Lucky Me!

Well, not  exactly ...

I've got another backache that won't go away.

Dr Salwitz sent me for a new MRI. And it looks like some nerves are getting pinched ... again. It took about 30 seconds for him to get around to suggesting we consider radiation to reduce the swelling. And believe me, that sounds great since it will probably free up those nerves in a snap. Even so, the pain isn't so bad that I want to go running in too fast. Maybe we could figure out just what is going on / how much of it is going on / where is it going on / stuff like that ... y'know.

All right. So. This Friday the 'Interventional Radiologist' (fancy new term I just learned - here's the wiki entry) will do a 'Guided Needle Biopsy of the Sacrum' right into the center of the spot pushing on those nerves back there. The results of that plus a total analysis of the two or three buckets of blood they are taking from me on Thursday will = a bunch of new information.

If you drop by early next week I'll try to have an update posted.

Ok. That's all I have to say about that

Blessings & Ideas

Blessings

Here's what I wrote yesterday as my Profile Google.com ::

"I'm out here trying to give a bit more than I'm getting which is tough since I seem to be getting so much good out of life - steady health + loving family + strong friends + plenty of opportunities to exercise my heart & mind & body.

Why don't you give me a shout if you think I could be useful to you? I'd be glad to hear from you.

- Mark

The words just came out of somewhere and I put them down just like that. Neat, huh?

Ideas

A volunteer from Myeloma..Org called me last Friday. I initiated the call when I made a request through their website for contact from someone who had personal experience with Multiple Myeloma. I am very glad I did that. What a wonderful experience that was!

I don't remember ever feeling that another person was really in tune with the thoughts and feelings I had experienced while going though my diagnosis and treatment as much as I felt during our phone call. Besides being able to recall situations and feelings from those times, I was able to see a new perspective on the time since then. I got a glimpse of how I am different since then too.

Before I start wrestling my ideas into some sort of well polished picture, I think it might be good enough if I just write out what came to mind during that conversation. So here it is:

It seems that one big change is in my attitude toward my finances and the way that I use money. Since the reader doesn't know me personally, I can share with you what one person said back in '04 about his view of my attitude toward money. He said, "Mark, of all the people I know there isn't anyone who is so careful with his money as you are." He added, "You are really tight with a buck, man!" And Jack knows me pretty well; both personally and professionally.

Once I got my diagnosis, the first thing I did after beginning dexamethasone & talidomide treatment was to plan a trip. I wanted to go and see the people I love and to have fun doing the things I like to do. There were just two things holding me back. I would have to be away from my son who was just 3 years old at the time and it would likely cost a few thousand dollars. I reasoned that my son would soon be seeing me night and day because I was expecting to be home through certain phases of my treatment.

But the money... it had taken a lot of scrimping and doing without to keep it together! But I thought there was a chance that as soon as a few months later, I  would be in no condition to manage the trip; at least not without someone to help me along. And a lot of the activities I wanted to enjoy needed me to be pretty fit.

And that was the first time I decided to spend money a bit more freely than I had in years -- just to make the best of the time I had -- doing the things I enjoy -- without worrying that the money I was spending would be needed later for something more important. I had the important thing to do right then.

The past couple years have apparently been chock-a-block with lots more of those 'more important things'. Or maybe it is that my attitude toward saving for a future has become less important. For sure my savings are a lot smaller than they were four years ago. My idea about what money is for has changed.

I also have more confidence that I can contribute and get compensated now. So I don't need to worry about saving against the time when there is no way for me to give more than I get to receive enough of what I need.

I guess that about covers it ... and that's all I have to say about that ...