Sunday, January 31, 2010

Graphs, first in a series: Monoclonal protein

Sorry to take so long with these, folks, but I've had to dig around for some of the data. Once I got to Arkansas I was pretty meticulous (with the help of my lovely wife) at keeping this data organized, but pre-Arkansas and sometimes in between treatment phases I was a little less consistent.

What I hope to do with these graphs is provide some useful information for patients going through therapy, as well as interesting data for the curious. If statistics aren't your thing, skip over the stuff. I'm erring on the side of providing more information rather than less.

The first graphs are of the monoclonal protein spike, the bad protein generated in my blood by the Myeloma. Most MM patients secrete this protein in their blood; some do not, however. This protein is an "immunoglobulin" that the immune system creates in response (or in preparation) for an invader in the system that needs to be killed off. Normal protein matches these immunoglobulins against specific invaders and there is a spectrum of diversified proteins in the blood to deal with the myriad invaders. Monoclonal protein is one specific protein that is replicated out of control, and it is useless to the immune system -- worse than useless, in fact, since it crowds out the useful stuff.

It was through observing an elevated total protein number in my routine labwork that my original primary care physician suspected something was wrong. The reason the total protein was elevated was because there was all this evil protein kicking around in my blood. It was about half the protein in my blood, in fact, at diagnosis.

These are all measured in grams per decileter, by the way.

The first graph shows the total protein over time from the "pre-diagnosis" draw at my hematologist -- a couple of weeks before the bone marrow confirmed that I had myeloma -- and has the dates of my various therapy treatments superimposed.

If you "doubleclick" on the graph, it will open in a bigger window so you can see it better, by the way.



This second graph focuses more closely on the treatment phase only -- this makes the trendline easier to observe.



This last graph is done on what is called a "log scale." For those not into statistics, let me try to explain briefly...traditionally graphs are shown on a linear scale. So if you are looking at the "Y Axis" (that's the vertical axis) and observing the amount of protein over time, the distance on that axis between 0 and 1 is the same as the difference between 1 and 2. On a "log scale" the distance is expanded so that smaller amounts don't get lost on the graph. The distance between .1 and 1 is the same size as the difference between 1 and 10! And the distance between .01 and .1 is the same as the distance between .1 and 1. This is probably easier to observe visually than read about.

This graph is useful for a couple of reasons. First, you can see the smaller measures more clearly. And second, you can observe the way the protein is reduced by therapy. It is reduced logarhythmically...which means it looks like a bit of a weird curve on the linear graphs above but actually appears linear -- that is, a pretty straight line over time -- on the log scale chart. I've superimposed a line here so you can see what I mean.

I realize that this last bit is probably overkill for most, so I apologize!!!

Thursday, January 28, 2010

Test results in, and the are GOOD!

Hello people.

Getting ready to depart Little Rock. It was a very successful little trip!

First, my test results, furnished rapidly, in detail, and without me having to ask for them.

* Blood:
- White count up to 4.52 (in response to my cold, which is going away with the help of Augmentin, a strong oral antibiotic)
- Hemoglobin is 12.9, a little on the low side but to be expected given the Revlimid
- Platelets at 116, same comment
- RDW is up at 14.4 and the abnormal red cells I noted are due to the Velcade; they are nothing to be concerned about
- Just started tracking CD4 helper T cells which are quite low (expected given the immunosuppressants I am on, this is normal)
- Blood chemistry is all good
- Lipitor is working: Cholesterol is 180, triglycerides 141!

* Cancer markers:
- B2M is 1.3, very good!
- "M protein cannot be detected at the level of sensitivity of serum protein electrophoresis." I.E. No M-spike whatsoever!
- Immunofixation negative: "the original IgG lamba M-protein is not present." First time I've seen this in Arkansas!
- Same results in urine -- no M protein to be found anyplace!

* Bone marrow "negative for plasma cell myeloma"!
- No M component!
- Plasma cells <5%
- Normal morphology with no abnormalities
- This makes four consecutive bone marrow pulls that have all been normal!!

* MRI
- All previously described focal lesions in spine have deceased in signal intensity and size, no new lesions detected
- In the pelvis, largest focal lesion has decreased to 2cm (this was once 5cm) and other focal lesions have gone away
- No focal lesions in the shoulders any longer
- Decreased focal lesion in the left clavicle (was 1cm, now 5mm)

* Bone density is "excellent."

Sum total of all this: sustained deep remission, bones rapidly healing, precisely what they want to see!

Next steps: another course of Zometa, some testosterone (BB overruling my urologist!), Velcade inceased to 1.3mg per m2, rather than 1, but Dex decrease from 20mg to 12mg! I'll take that tradeoff!

Re: the Velcade, which GD had said "I don't think can be increased," BB said "ridiculous, I give this to little old ladies, we used to do much more than this."

Reducing the dex will help me lose weight, get better sleep, and reduce muscle wasting -- all good.

Some Q&A with BB yielded some funny moments:

* He asked me how I felt. I told him "recent bloodwork shows abormal red blood cell morphology" to which he said "so you walk down the street, grab your side and say "oh sh*t, I am experiencing abormal red blood cell morphology!??? I said 'how do you feel?'" And I had to admit, I feel good, other than the dex making me tired and hungry. He noted that the Velcade "is in the bone marrow stirring sh*t up in there, the marrow is trying to keep up, you're going to have some weird cells as a result but this will pass once you are no longer on Velcade, and it's nothing to worry about in the meantime." He suggested I stop observing myself so closely! :) Probably good advice.

* I told him I wanted to see if I could get any of my height back. He thought this would be a good idea (not just for vanity, but also to ensure spine health, avoid pinched nerves, etc.) so I will have a consult with the expert when I'm here next. He called BJ to set this up and said "Nick van Dyk is interested in extending his extremity.....(long pause)...please call a urologist." :) He then amended this, of course. :)

* We are looking for MRI complete remission as the next step. I asked him if there was anything I should be looking for as a negative indicator. He cut me off. "You will be the first to know. I'm way ahead of you. I see data updated from all my patients every Thursday and I spent hours poring through every number looking for this stuff. I'm more obsessed with your disease even than you are!"

* He gave me an unpublished article from Blood (it will be published soon) that shows the cure signature for Total Therapy 3 dating back to 2003. 55% of newly diagnosed patients. 74% of newly diagnosed low risk patients. 87.6% of newly diagnosed low-risk patients that reach CR (this is my group, thankfully). I have mentioned before that I have the Proliferation Subtype(PR) of the disease, which is an unfavorable indicator. Only 11 of 230 people with the Proliferation Subtype have low-risk disease. It is not the dominant marker for me, but it's still there. And it confers, even in a low-risk setting, a worse outcome (this is in part why he is juicing the Velcade). However, once these patients achieve complete remission, 87% remain in complete remission two years later -- and that is for all patients (including high risk). He was able to show me low-risk patients that achieved complete remission with the PR subtype -- and every since one of them remains in complete remission four years out. In other words, achieving CR overcomes the negative attributes of the PR subtype.

All in all, could not have been a better series of results.

Next steps:

* Another course of Zometa to speed along bone healing
* Velcade up to 1.3mg
* Dex down to 12mg
* Depo-testosterone administered via intramuscular injection, not a pad
* Return visit in May for another PET, full body MRI, another bone marrow, bloodwork, and probably back surgery

We then had a lovely dinner with BJ and BB's wonderful wife Kathy (the good doctor himself was not able to make it as he had dinner with a candidate -- don't know if that meant a prospective patient or a prospective doctor). The warmth and genuine concern of these people is amazing. We are so fortunate to call them friends, and so fortunate that we found this place.

This week we spent a bit of time with WB, whom I spoke with on the phone a few weeks ago at the request of BJ, and WB's lovely wife S. WB is just entering the program, was randomized to the lite arm yesterday, and begins his journey today or tomorrow with induction. I see a lot of the same questions and concerns I had a year ago in him -- and as with my new friend JH (who himself had an outstanding consult here last week, and will be monitored before entering treatment as BB felt he was in no danger at this time) I feel really good to be able to "reach back through time" and talk with people that remind me a lot of where I was at the beginning of my own journey. So WB, if you're reading this, go get em!!! And JH, you've picked the right place, for whenever you decide to proceed.

They are curing people here -- in large percentages. Make no mistake.

Be well, everyone! Graphs will start coming soon, I promise!

Tuesday, January 26, 2010

Return to Arkansas, part 1...or I hope God has a good sense of humor!

Dateline: Little Rock.

Jill and I are in the Capitol Hotel, where we arrived on Sunday evening. It's about a year ago to the day that we came out here for testing and ultimately determined that this is where I would make my stand against Myeloma. Returning now, there's a nice almost nostalgic feeling to some of it. A few of the nurses recognize me, but many take a moment as I've got hair now. I've also put on weight, as too many have pointed out! They mean this as a complement, but I'm wary of the impact the dex continues to have on me. Nonetheless, considering how bad I looked when I had lost 40 pounds in the hospital, I'm taking their comments in the spirit they are intended: a return to health.

Yesterday they drew blood. I had arranged to have them use the portacath and so rather than go to the MIRT (the Myeloma clinic which is manned by people other than RNs, and who therefore cannot access the portacath) I scheduled the blood draw from the infusion center, which IS manned by RNs. For those who may not know, post-chemo it's hard to find a vein, and a "peripheral stick" (needle in the arm) is more of a nuisance than just accessing the port.

However, the best laid plans of mice and men (I just mistyped "best laid men of...") often go astray. They wanted to run a "clotting factor" test which would be effected by the heparin in the central line, so they had to go for the arm anyway. The first RN looked at my arm for a few minutes and couldn't find a vein. They called in support. Around this time I figured I would just demand they use the central line, which is what I found myself doing post transplant when I was just sick to death of needles. However, the support (a nurse named David) was a pro, found a vein, stuck it, and that was that.

We bumped into a new patient (BB, who I will call WB so as not to confuse him with Il Doctore) and his wife with whom I had spoken on the phone a few weeks ago. I have asked BJ, BB's faithful right-hand, to call on me as a resource to speak with potential patients and WB was one person that she thought could benefit from a conversation. I was happy to speak with him and happy to see him here, having gone through the same calculus that I did about a year ago before deciding Arkansas was the right place for me. I see a lot of me in him -- he's going through the same early-day frustrations (go from point A to point B to point C, not everybody is coordinated, lots of waiting, etc.) that I did. I marvel at how much patience this entire process has taught me!

On this note, I then met with a research nurse. Here's where things get a little confusing. I am on Velcade weekly as part of maintenance. Upon scheduling this return trip, I wanted to make sure that I would be administered Velcade on the Tuesday (today, as it happens). I had asked PinnacleCare to follow up on this. My rep at PinnacleCare spoke with a woman in scheduling here, who said that this was a planned week off from Velcade for me. That was news to me, but welcome news insofar as Velcade is responsible for that weird red blood cell morphology and my depressed white count and a little breather wouldn't be a bad idea. So long as it is on protocol -- I don't want to win a meaningless battle (red blood cell weirdness) only to lose the war (cancer returns).

The research nurse was surprised. Said there is no time off Velcade ever. Said the protocol requires weekly administration and the only time people are ever taken off it is if there is toxicity. Said she had no idea why anybody would tell me otherwise.

Okay, says I. No problem. I'm getting the portacath access tomorrow for the bone marrow. Just push some Velcade through it and we're done. Right?

Wrong. There could be contra-indications, evidently, between the conscious sedation and the Velcade, and they can't be given on the same day. I explained I'm not getting general anaesthesia -- it's a little Versed and a squirt of Propofol to keep me knocked out for ten minutes. She wasn't budging. I asked her to check. Jill pointed out that it is strange that, knowing this, they would have scheduled the bone marrow for a Tuesday. The nurse had nothing to say on that point.

Frustrating.

So we left, with the understanding that this nurse would check with BB and if it was okay, I would get my Velcade tomorrow, and if not, I would get it Wednesday. Evidently there is a +/- 1 day flexibility on this administration, which is good to know. Although I still need to get NEXT week's dose (Feb 2nd) done at Sloan Kettering in New York while there on business, which will pose a new logistical challenge and one that I am actually a little excited to undertake. One more little victory to be pulled off.

Later in the day on this point, a DIFFERENT nurse called and said there would be no Velcade because it was "too confusing" given the conscious sedation. WHAT?? I was dead asleep when they called or I'd have been more on top of it. This person said that the protocol allowed for me to skip a week. Also news.

This is the type of disorganization that might set BB off. I am confident that when I meet with him, we'll get to the bottom of it, and that worst case I'll get Velcade on Wednesday instead of today if I need it.

After the nurse consult, it was off for more tests. EKG. MRI. Bone densitometry. The last of these was the most interesting. Before talking about it, I will note that the MRI was a little briefer this time (only about an hour) and I popped an Ativan and slept through some of it. Good thing I am not claustrophobic as the last bit of it literally had my elbows and knees touching the inside of the machine, and the mask they fit over my face (think football helmet grille) was brushing my nose on one side. Tight quarters!

Anyhow, the bone densitometry was eye-opening. I saw the before and after of my vertebrae and confirmed that I have lost an inch of height. Most of this is from two vertebrae, each of which has lost about half an inch. I see the nice, square, ice-cube shaped lumbar vertebrae on the scan from a year ago, about one-and-a-half inches square, with a tiny little chip out of the upper right corner. Then there's the "after" shot where the thing is about 3/4" inch on one side tapering to about half an inch on the other and compressed all to hell.

It's a bummer. Particularly when the technician said "I can see where it was starting to go last time." You mean if they spoke better around here, they could have given me something that might have stopped it?

This really bums me out. Losing 10% of my vertebral height might seem like nothing but when I'm 5'8 to begin with, it makes a difference, and as I've remarked before all the guts are still there...they just push out more. This is mostly vanity, and my life has (hopefully) been saved so it's hard to complain, but it is discouraging to think that this could have been prevented had I taken more immediate action up-front. I'd have needed to begin treatment probably a month earlier than I did. Recall that my real sharp back pain, which was this vertebrae starting to go, happened only about a month after diagnosis, so I'm not sure how much could really have been done, but again, it's discouraging to think there wasn't enough talking going on here. I am reminded by Jill that there was a missing MRI that should have been done, as well, that would have caught this.

So let it not be said that this place is absolutely perfect.

However, it is where the irrepressible BB is saving lives, with increasing frequency. And I can't say enough about him or his people here.

I got a fair amount of work done in the afternoon and we got a bite to eat, after which we went by our old condo to say hello to the concierge. We noticed a BMW motorcycle parked in front of the restaurant there. BB's Ducati, I was reminded by Jill, doesn't start as well in the cold and it is quite cold here right now! When the concierge affirmed BB was there, we went over to say hi. He was having drinks with a colleague (another doctor in the clinic whom I had met with once) and did not see us come in.

I couldn't resist, and here's where I hope God has a good sense of humor.

Long-time readers may remember one doctor here who wears his religion and politics on his sleeve, and who allowed them to unprofessionally cross over into his clinical role with me. As BB is a scientific atheist, he has told me that he playfully mocks this other doctor (who I will call Dr. R in this entry). He has also pointed out that Dr. R is a very good man who has gone to great lengths to be helpful to BB personally, and I am sure this is the case. So this will be the last time he is the butt of a joke from my end of things (unless he crosses the line again).

Aware that BB had not seen us enter, I wrote a note for the waiter to bring to BB's table. It said "Dr. R is on the phone. He says he has seen Jesus in a potato chip. Will you take the call?"

We watched BB unfold the note and start laughing, then we went over and said hello. He's aware of the blog, which means some folks in the clinic must be reading: I LOVE YOU PEOPLE!! THANK YOU!!!!

Today there is more testing, and I'll get to the bottom of the Velcade thing sooner or later. And of course there's the hopeful news from my MRI (fewer / no lesions?) and bone marrow (no disease), etc. which I will dutifully report!

Saturday, January 23, 2010

It really stinks having a cold with a suppressed immune response...

I've been up all night, coughing every fifteen minutes. Not quite as bad (in fact nowhere near as bad) as when I got out of the hospital last March and was coughing every two seconds. Just enough to ensure that I can't sleep.

It's 5AM...I got about 90 minutes of sleep. Didn't take Ambien...I'm tired enough, that's not the issue. It's the coughing. I took some of that Mucinex (remember the guy that looks like Pauly from Rocky? He's partying in my lungs with his friends) and it worked Thursday night, but not last night.

I continue to remind myself that my immune system isn't fixed yet. I need 32 more months of treatment before it's pronounced ready to return to prime time. I just hope those bones heal quickly so I can dose reduce!!!

Friday, January 22, 2010

Weird blood cells...

So in preparation for what's gonna be a really cool series (I hope) of graphs and charts on this blog I've been entering all my bloodwork data from Dr. GD's office. I went through PinnacleCare, my invaluable medical advocacy ally, to get these records since as I've noted before, GD's office isn't that good about getting them to me.

I saw a bunch of odd things that are probably nothing...but they do give me pause.

* A small number of atypical lymphocytes (i.e. abnormal white blood cells) in three blood draws over the last five weeks. There were none in the nine weeks before this.

* Odd red cell "morphology" over the past few weeks, including Anisocytosis (this is the technical term for the RDW figure -- meaning the variability in size is larger than one would expect) as well as Polychromsia, Pokilocytosis, Ovalocytes and Tear Drops -- I looked all these up on Wikipedia yesterday and they're all variations on abnormal red blood cells.

Are these the impact of Velcade and/or Revlimid? Probably. Are they irrelevant? Most likely. Do they make me nervous? Yes.

Anybody else have experience with these things?

All questions for BB since GD hasn't seen fit to draw my attention to them. I'm sure they are nothing but these people need to understand I want to be completely on top of things and know everything about my physiology, whether as a result of the disease or as a result of the treatment.

Meanwhile, the cold continues to make its way through my respiratory system. I'm also planning a short business trip to New York soon, which will put me there rather than in LA for a weekly Velcade administration. This will theoretically be done in the clinic of Dr. HL, who was going to be a consult of mine (dear God I almost typed "consort" my mistake!) about fourteen months ago, before I decided on BB. Yet there are logistical challenges...but I'll save that for a future report.

Have a good weekend, everybody!

Wednesday, January 20, 2010

When it rains, it pours. Or: The Old Grey Mare. Or: Interesting numbers on Velcade.

We are getting a Old Testament-style storm in LA right now. In one sense it's good because the state needs precipitation. But it's REALLY dumping. And the ol' house is leaking. My beloved wine cellar has water all over the floor. Our den has water coming in. Our breakfast nook has a six foot by one foot strip of paint that has bubbled and is bursting. This was in an area where I paid to have the roof fixed. I'm concerned that we will have to have our dry wall torn out and replaced. We can ill afford this right now...but them's the breaks.

So the Old Grey Mare of the house ain't what she used to be. And neither is my immune system. My son got sick yesterday. Despite copious amounts of handwash, etc. I'm now sick. Readers may recall it took me three damn weeks to get over my cold last time...and that was with a healthy white count.

[ Editor's note: To be clear, while I kvetch a bit about the leaks here, my intent is to use the leaky house as a metaphor for my suboptimal immune system -- neither of them are what they used to be, hence the "Old Grey Mare" reference. Please don't think I'm being so petty as to complain about a leaky house on a blog dedicated to battling cancer, read by fellow cancer sufferers! ]

Which brings me to my next observation: yesterday's labs were good for platelets, which recovered to 148, and not so good for hemoglobin (12.0, now low) or whites (3.1, quite low). When combined with my immunglobulin (low, thank God!) it means I'm not gonna fight this illness very well.

Since I have been off revlimid for the week, and since platelets rebounded, I am beginning to believe the white and red suppression comes from Velcade (which I have stayed on). This is all part of the price to pay to eliminate the disease -- and indeed, unless one doesn't believe in maintenance therapy (and there are those that don't, though the number is less than it was even a year ago) one is likely to be on some combination of this stuff whether or not one goes for the aggressive / cure-it / Arkansas approach or a less aggressive control approach.

I'm hoping Tamiflu is enough. If not, evidently last time one of the clinicians in Arkanas (CR, for those following the blog...and the CR in this case doesn't stand for Complete Remission!) mentioned to the wife that he had something that would clear up my symptoms almost immediately. Of course this didn't occur until around day 17 of my 21 day cold. But *this* time I may give him a buzz earlier.

When I was at GD's office yesterday, once again they didn't give me lab results from a week ago. This is frustrating and I told them so. I'm building up to really letting them have it but I'll deal with that after I get back from next week's tests in Arkansas. The nurse who administers my Velcade (and she is pretty good at accessing the port, though it's more painful than the other nurse that used to do it) gave me a briefing she had gotten about a bunch of Velcade trials. She didn't understand most of it.

Anyhow, there's a trial called VISTA. It began in 2005. People treated with Melphalan and Prednisone were in one arm, people treated with these two plus Velcade were treated in another.

* 3-year overall survival was 72% for those with Velcade, 59% without.

* The median "treatment-free interval" was a whopping 16.6 months (I'm being sarcastic) with Velcade and 8.4 months without.

Translation: on Velcade and these other drugs alone, this disease kills a lot of people, and it comes back relatively quickly.

Not good enough. Hence Revlimid and Thalidomide, for one. Hence a stronger steroid, for another.

The same drugs that suppress my immune system. Hmm....

Pretty easy trade-off. Bring on the TheraFlu! :)

Wednesday, January 13, 2010

More phantom aches...

It's thankfully fading as I type this, but I awoke this morning with a dull pain (very minor, but I am attuned to these things) in my back. The ache is still there if I really focus on it -- it's about two inches to the left of my spine. I recall there being pains there during therapy, though I don't recall if it was the lesion or the vertebropasty that caused it.

Based on my conversation with GD yesterday, it seems unlikely that this is a recurrence. I remain immunofixation negative (although another test was done yesterday). And as GD points out, with recurrence, the pain generally worsens rather than goes away.

I am hopeful this can be dismissed with an MRI. I would prefer not to need to do another PET and God knows I don't want BB digging around with a Fine Needle Aspiration of these spots, which is probably where he will go with it. But if that's what is required, then I will submit to it.

More on this and other things of note as they develop.

Tuesday, January 12, 2010

Another day in GD's chair...

Hello folks.

Got my Velcade and a brief visit with GD today. Again, no review of my labs with me and I didn't get a copy. I will make an issue of this next time I see him -- today, he had laryngitis and between that and my rough day at the office I didn't feel like dealing with it.

I managed to see enough to note the following:

* White count is low at 3.7, but not alarmingly low.

* Hemoglobin is 12.7, again just a little low, but not alarmingly so.

* Platelets are back up to 96 after dipping to 89 last week.

I start my week off Revlimid today so these numbers should all have a chance to recover somewhat for next week. I noted to GD that I might discuss dose reduction with BB when I see him week after next, while also commenting that I know BB was considering INCREASING rather than decreasing my Velcade. I don't want to screw up the results of the therapy, since it has been successful. But I'd really like my counts a little higher if that's possible.

I also saw that RDW, that strange marker that I was so happy to see in the normal range, remains high at 14.6. Not crazy high, but high. I was going to ask GD about it...but then he didn't give me any time for questions and I know he'd probably just wave me off anyway. I'll ask BB about it instead.

We discussed my shoulder, which hasn't hurt in two weeks. GD did not think it was recurrence, since when recurrence happens the pain usually is persistent and doesn't go away, or if it does it comes back more sharply pretty quickly. He also didn't seem to think it would be from healing of the bones. The MRI should tell all -- and if it doesn't, I'm sure Bart will order a PET that I'd prefer not to need, all things being equal. We'll see what the MRI says. Hopefully the lesion is healed and that will take care of it. Then we can chalk it up to being over 40 and call it a day.

A number of people with whom I've spoken over the past weeks are headed to Arkansas for testing and potential treatment. If they are reading this, good luck and I hope to see you when I'm there!

Monday, January 4, 2010

Immunofixation negative still...but what about the shoulder?

Okay, so I managed to PRY out of the people at GD's office that my test as of 12/22 was still immunofixation negative, so that's good.

So what's with the faint dull pain in the shoulder? Could this be bone healing? God I hope so! We'll see how things go.

I head back there tomorrow (GD's office) for my weekly infusion. The nice nurse Denise who has gotten good at port access and hasn't hurt me is moving on, unfortunately. So I am now in the hands of her peers. Hopefully they are good at not inflicting pain!! :)

A pain in the shoulder...

Well, it's a sleepless night, not due to the dex.

I played an atypically bad round of golf on my last day off for the holidays. I made the mistake of taking a few lessons from a golf pro and he ruined about three years of work. I'm not happy. If I spent as much time, money and effort at ANYTHING as I do at golf, I would be so good at whatever activity that is by now...

More troubling, though, is the dull pain in my left shoulder. I recall that it was a sharp pain in my left shoulder that was my first sign that anything was wrong with me, back in October of 2008. There is something going on on the shoulder...nothing all that painful but there's something there, and it doesn't feel like muscle. It feels like bone.

Add to this that I'm still in limbo as to the last immunofixation test and it makes for a restless evening.

I'm (almost) certain that I'm still at zero M protein, and that I'm still in complete remission, and that whatever discomfort I feel is simply because the bone hasn't healed 100% yet. And yet it's a reminder that all is still not completely well.

I hope it goes away -- because if it doesn't, I know that I'll be in for fine needle aspirations and other PET down in Arkansas, even if it's just to prove a point that there's nothing there. The MRI might show that it's gone (in which case I don't know what I'm feeling) but if it doesn't, it won't show avidity in the lesion (i.e. are there cancer cells "doing the Watusi" as BJ once said). We need another PET for that.

Anyhow, in a few hours when they open, I will call GD's office and tell him I want my GD test results, and we'll take it from there.

In other news, I spoke this evening with a nice young woman from South Carolina whose father was recently diagnosed. I'm trying to toe the line between being an impartial advisor/resource and being an evangelist for Arkansas, but the most important thing is this is another example of the usefulness of this blog and I'm so appreciative of the opportunity to talk with newly diagnosed patients to help them navigate their choices.

Happy New Year to you all...I will get to those lab results this week as they are pretty interesting.