"So How Are You Doing?"

I still get the occasional e-mail asking something along the lines of "How are you doing?" or "How do you feel?". Although I'm tempted to simply direct my interrogator to this blog, I haven't done that, because I recognize that it must be difficult to piece together the big picture from these fragmentary blog posts, which tend to be narrowly focused. So, since I seem to have reached a state that is at least semi-stable, however precarious it seems to me, I will attempt in this post to provide an overview of the situation.

Daily life for me currently revolves around the chemotherapy and the physical therapy. After much trial and error, it appears to me that we have arrived at a set of supplementary drugs that together minimize at least the overtly undesirable side effects of the chemotherapy. The only side effect I really perceive these days is fatigue; I want to sleep more than eight hours overnight, and I want to take naps during the day, usually in mid-afternoon. I consider myself extremely fortunate not to suffer from any nausea or other digestive tract disturbances traditionally associated with chemotherapy. My appetite is pretty good, but not completely up to normal; I don't know whether to attribute this to the drugs or to the cancer itself.

I am still 25 pounds down from my original weight, and my legs still seem quite weak. Although I have begun working with a cane at home, I mostly still use the walker to get around, especially on any expeditions into the outside world. I do perceive that I am slowly gaining strength, thanks to doing as much walking as I can manage, combined with the other physical therapy exercises. I have much better posture and foot placement when walking than when I began, but I still have some problems with balance, which some of the exercises are meant to address.

I try to do as many things as possible for myself. I dress, shower, shave, brush my teeth, etc. without assistance. I find these activities tiring, but progressively less so as I gain strength and stamina. I can climb up and down stairs, but require assistance if there are more than a couple of steps. Bending down to pick up anything weighing more than a few pounds is still out of the question. I haven't tried driving yet, but I think my first attempts to do so will take place in a big, empty parking lot.

I am trying to find my way back to work. I have reestablished contact with my old team, and dial into the conference calls when my schedule allows. But at the moment there is still considerable head-scratching going on over how best to utilize someone in my situation.

I emerged from my first hospital stay with a certain amount of numbness and loss of control everywhere from the ribs on down. If my nervous system is routing around this damage by building new pathways then it certainly is taking its time about it. I have come to accept that I will probably have to live with considerable permanent neurological damage.

I do have some constant, low-grade pain, which is being held at bay with low-dose Oxycontin. This is the pain in the ribs on the left side that is the motivation for consulting the neurosurgeon this week.

OK, I'm about played out now, so it's time to end the blathering. I hope what I have written here serves to clarify matters in at least a few minds.

Preparing To Attack An Old Enemy

For a long time now, almost since the beginning of my first hospital stay, I have been taking 10mg Oxycontin every 12 hours, to manage the pain in my lower ribs on the left side. After the surgery on the T8 vertebra and the subsequent radiation therapy directed at the region of T8, this pain was supposed to gradually go away. But that hasn't happened. So now it's time to get to the bottom of what's causing it, and determine whether there are any reasonable remedial actions that can be taken to eliminate it.

To that end, I spent a good portion of today getting thoracic X-rays and a thoracic bone scan. The latter is a nuclear imaging technology that involves injecting the patient with some radioactive material and then waiting for three hours while this material is absorbed in varying degrees by the bones and other tissues. The patient is then placed under a scanner (in my case, for about 45 minutes) that creates 3D images based on these variations in "uptake". Variations caused by tumors, stress fractures, etc. cause such artifacts to show up in the images.

The X-rays and bone scan images have been turned over to the neurosurgeon who performed the original ballon kyphoplasty procedure on T8 back in June. I have an appointment with him next Monday to hear what he has to say about what they reveal (or don't) about the cause of the rib pain; and what, if any, recommendations he can make with respect to making it go away.

A Big Thank You To All

Since I don't have much of interest to report at the moment (Friday's two-hour Aredia IV drip was completely uneventful and boring), I want to take the opportunity to thank all the many, many people, far too numerous to mention individually (even if doing so didn't violate the "no names" policy I have been following with this blog), who have sent me e-mail messages, cards and gifts since I became ill. I am way overdue on this, for which I have no very good excuse, so I simply offer my apologies for my tardiness in this regard.

Special thanks go to those who have enlisted the prayers and petitions of their church or pagoda congregations on my behalf. Periodic tugging at the sleeve of the Supreme Being of one's choice certainly can't hurt.

And extra special thanks go to those who have traveled from near and far to assume the role of temporary substitute caregiver, thus enabling my poor wife to get some much-needed breaks away from this situation. Time spent at the beach with grandchildren, even if only a few days, is a tonic with amazing restorative powers, apparently.

Cardiac MRI Results

Fortunately, the cardiac MRI did not bear out the cardiologist's hypothesis of amyloidosis caused by the multiple myeloma. It revealed no evidence of any kind of damage to the heart muscles. This is very good news, but leaves us back at square one, in terms of diagnosing my symptoms. The next step down this road would involve substantially more invasive diagnostic techniques, but no one involved wants to go there at this point.

So we have agreed on a kind of passive-aggressive strategy for dealing with this situation. I will continue with the daily 20 mg dose of Lasix to control the fluid retention. Meanwhile, I will attempt to gradually wean myself from the supplemental oxygen. I will don the hose only when walking, or otherwise exerting myself in some way, but remove it when at rest. If this goes well then the next step would be to attempt to lose the oxygen altogether. That would of course be a very good thing, but whether it would be accompanied by corresponding improvements in blood pressure and heart rate is anyone's guess.

Bisphosphonate Therapy

If you or someone you know is being treated for osteoporosis using one of Actonel, Boniva, or Fosamax, then you/they are receiving bisphosphonate therapy.

We're used to thinking of bones as being static objects once we reach adulthood, but they are of course really collections of living (and dying) cells that must be constantly maintained over time. The body produces two types of specialized cells that are responsible for this maintenance. Osteoclasts "digest" what they think are old, ineffective bone cells, and osteoblasts create their replacements. In patients with osteoporosis or multiple myeloma, the osteoclasts outrun the osteoblasts for a variety of reasons, resulting in gradual bone loss. The bisphosphonates inhibit the osteoclasts' activities, either by interfering with their creation, or by interfering with their attachment to the bones' surfaces.

The bisphosphonates used to treat multiple myeloma, either Aredia or Zometa, are much more powerful and dangerous (in terms of possible side effects) than those used to treat osteoporosis. They are delivered monthly, via an IV drip, oral versions being unavailable. This Friday, I will get my first monthly dose of Aredia via an IV drip lasting approximately two hours.

Recent And Upcoming Changes

I visited the oncologist's office Friday morning; he announced that since stopping chemotherapy didn't appear to have had any affect on my heart-related symptoms, he was ordering me to begin the second phase on Monday, and to resume taking Allopurinol immediately. I can't remember previously mentioning Allopurinol, so I'm mentioning it now. One of the effects of the chemotherapy regimen is that the dead blood plasma cells break down into, among other things, uric acid, which it is the responsibility of the kidneys to remove. The body produces uric acid on its own as well, so to give the poor kidneys a break, Allopurinol is used to suppress the normal production of uric acid.

The oncologist also ordered that bisphosphonate therapy should begin next Friday. This topic deserves a post of its own, which I will provide once the therapy has begun.

The physical therapist is happy with my recent progress, so much so that this week she began taking me out from behind the walker and working me with a cane. This is the most hopeful development for me that has occurred in some time. It gives me the idea that eventually I will walk normally again, and then have only fighting the cancer to worry about.

The Cardiac MRI

The cardiac MRI turned out to be, at least in my case, a three-hour operation. I had heart monitor probes stuck to my chest; on top of that, I was strapped to the table with a device that vaguely resembled a baseball umpire's chest protector. This, I was told, was a kind of RF transceiver that matched another of its kind on the underside of the table.

The MRI was done in two phases. In the first, much longer, phase, I was simply pushed into the tunnel, and then periodically, a very large number of times, instructed to hold my breath while an image was taken. I would say the longest interval I was required to hold was about 30 seconds. This went on for what seemed a very long time, and my legs and back got pretty stiff, before I was finally pulled out.

For the second phase, I was fitted with an IV, and some kind of contrast material was pumped in. Once this was done, I was pushed into the tunnel again for more breath-holding, but for a much shorter span of time.

And that's pretty much it. Things were slightly more complicated than usual due to my requirement for supplemental oxygen throughout, but the technical team handled this as being more or less routine for them, so it really didn't take any extra time.

So now all we can do is await the results, which should be available some time next week.

"Cardiac MRI": An Oxymoron of Sorts?

"Early next week" is turning out to mean Thursday afternoon, in reality. The cardiologist is unhappy about this, as am I, but so far none of the the local MRI-capable imaging facilities seem to be able to line up the right combination of qualified personnel and machine time any sooner.

In part, this may be due to the fact that a cardiac MRI is attempting to capture an image of a dynamic, rather than of a static, structure. The heart is gyrating frantically, whereas the standard MRI concept is about getting a high-resolution image of something that is holding still long enough to gather the data required to assemble such an image; any kind of movement distorts the image. So getting a good MRI image of the heart is significantly more difficult than getting one of, say, the liver or pancreas.

In any case, I remain in a holding pattern for what is turning out to be the entire week. The only bright spot is that on Wednesday I will be set up with a portable version of the oxygen concentrator, which will allow me to leave the house without dragging along a tank.

Enter The Cardiologist

Given that my heart-related symptoms do not seem be disappearing with the pneumonia, what is causing them? The cardiologist's initial working hypothesis is that some of the useless proteins produced by the malignant plasma cells (normal plasma cells produce proteins that are assembled into the required types of antibodies) have been deposited in the tissues of the heart, inhibiting the normal functioning of these tissues. This condition is known as "cardiac amyloidosis", and although it would be a somewhat unusual outcome for a multiple myeloma patient (hence my previous lack of awareness of the possibility), it is hardly unheard of.

The cardiologist was reluctant to discuss countervailing measures that could be taken, assuming that his hypothesis proved correct. He asserted that, in that case, it would revert to being a hematological issue, meaning that the ball would be back in the oncologist's court.

An EKG and an echo cardiogram carried out in the cardiologist's office did not -- of course -- uncover any smoking guns. The next step is a cardiac MRI, which is scheduled for early next week.

Another Delay -- Grrrrr....

I continue to require the supplementary 2 liters of oxygen; and although the Lasix may be holding the fluid accumulation in the ankles and abdomen at bay, it is not just going away with the pneumonia, as expected. Also, the visiting nurse is alarmed by low blood pressure readings (80/60) and elevated heart rates. Apparently, one of the major concerns here is congestive heart failure.

So today the oncologist declared defeat and referred me to one of the cardiologists who worked with me during my pneumonia-related hospital stay; my appointment is for tomorrow morning, which could be an indication of how seriously this is being taken.

The oncologist also called a temporary halt to chemotherapy, the second cycle of which was to have begun tomorrow, until this heart issue has been resolved. Seems like a good idea to me, although it is frustrating to have to wait out yet another delay of unknown duration.

The only bright spot is that none of this is interfering very much with the mild physical therapy exercise routine I am currently following, although it is annoying to have to maneuver around the oxygen hoses whenever I practice walking.

Celebrities With Multiple Myeloma

I think I mentioned in an earlier post that multiple myeloma is a relatively rare form of cancer, accounting for a low single-digit percentage of all cancer cases. I got a little curious about public figures who have been diagnosed with and/or killed by the disease, and did a little research on the topic. I hope I didn't waste too much time on this; in any case, I didn't come up with much. The following were being treated for multiple myeloma at the time of their deaths:

Actor Peter Boyle
Syndicated newspaper columnist Ann Landers
"Wall Street Week" host Louis Rukeyser
Actor Roy Scheider

Former Vice-Presidential candidate Geraldine Ferraro is a 10-year survivor; she is being kept alive with regular injections of Velcade.

Transition Period

Thursday morning I took the last dose of Revlimid of the first chemotherapy cycle. Friday morning, I took the 40 mg dose of dexamethasone, which is the last step in the cycle. Now I have a week off from the chemotherapy drugs. The Revlimid for the second cycle will be delivered sometime next week.

I will continue to take Levaquin this week, to kill off what's left of the pneumonia. On Friday the visiting nurse indicated that my lungs sound clear already.

I am still shackled to the oxygen machine, although I feel my wind improving. On Sunday the visiting nurse will do a test to see whether or not I am ready to come off the supplemental oxygen.

On Wednesday, I noticed that I was once again beginning to accumulate fluid around the abdomen. This was one of the symptoms that put me back in the hospital, because it leads eventually to congestive heart failure. The oncologist's reaction: "I don't understand why you weren't sent home with Lasix in the first place." It appears to me that there was some sort of disconnect with the cardiologist who signed off on my discharge from the hospital. In any case, the oncologist gave me a prescription for Lasix, which is now limiting the bloating.

And as if things weren't already sufficiently "interesting", I now have a new symptom or side-effect, in the form of a rash covering my back, parts of my stomach, and my groin. This rash mostly doesn't bother me very much, because it doesn't itch, except for episodes when it flares up briefly in one area or another. It seems to ignore Benadryl. No one seems to know quite what to make of it. I am hoping that it turns out to be a side-effect of the Levaquin, which I will stop taking in a few days.

Limited physical therapy has resumed. Aside from just walking, I have a few light exercises that I can do while seated. This second hospital stay caused a major setback for me in this area. I basically have to start over, at least in terms of strength development, although I have retained some of my earlier progress with respect to posture and control over gait and foot placement.