Thursday, September 30, 2010

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.

Monday, September 20, 2010

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.

Wednesday, September 15, 2010

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.

Sunday, September 12, 2010

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.