Wednesday, July 29, 2009

Home Again

I was discharged from the hospital yesterday (Tuesday July 28) at 2:30 P.M. I still have pneumonia, for which I must continue to take an oral antibiotic (Levaquin 500 mg) for another week or so, but the crisis is past, supposedly.

I am still having some problems with shortness of breath, so I am also on supplemental oxygen (2 liters). This is a major inconvenience, since I must remain tethered to the oxygen machine everywhere I go in the house, and the 50 ft. hose seems to want to do anything except what I want it to do; and if I leave the house, I have to drag a tank along.

In general, between the residual effects of the pneumonia and all the medications I am taking, I am strongly demotivated to do much of anything other than sleep. I more or less have to force myself to eat, walk, use the computer, etc. That accounts for the rather long gaps between my recent posts to this blog, for which my apologies.

On a brighter note, based on the results of the ongoing blood tests, the oncologist is claiming that the Revlimid is working, and that cancer cells are being killed. Pneumonia aside, the fact that this is happening with relatively few and relatively mild side effects is very good news indeed.

I am almost to the end of the first chemotherapy cycle. I have one more dose of Revlimid to take tomorrow morning; then I get the big weekly hit of dexamethasone Friday morning; and then comes a week off, during which arrangements will be made for the second cycle.

Saturday, July 25, 2009


The pneumonia turned out to be far more dangerous than we were giving it credit for. I began to accumulate fluid around the upper abdomen, and any sort of exertion resulted in shortness of breath. Thursday morning, the oncologist, observing this, ordered me over to the hospital for a battery of blood and urine tests, and a nuclear scan of the lungs, to look for blood clots.

Fortunately no clots were found; but the pneumonia was more advanced than expected, and the accumulation of fluid gave rise to concerns about the possibility of negative effects on the heart, which was showing elevated rates. So I was checked into a hospital room Thursday evening, and IVed with a couple of more powerful antibiotics. I was also IVed with Lasix, a diuretic; this, plus a restriction on
fluid intake of a maximum of 1000 ml per day, is designed to drain off the accumulated fluid. Finally, I was placed on a 24-hour portable heart monitor, and tethered to supplemental oxygen.

Friday I was subjected to an echo cardiogram, but so far I have not been told what if anything the cardiologist may have gleaned from that. Ditto for a CAT scan of the same area taken Saturday.

The effort to drain off the excess fluid at least seems to be working: net outflow over inflow for Friday was more than 2000 ml.

So, Saturday night will be my third back here in the hospital, and I think I can expect to be here at least several more, until all the various flavors of docs involved (infectious disease, cardiologist, oncologist) are able to agree that it is OK for me to go home.

Tuesday, July 21, 2009


On Sunday afternoon, I began to alternate between hot and cold flashes. A temperature check revealed that I was in the 101-102 F range. A couple of Tylenols knocked this down into the normal range, but Monday morning brought more of the same. The oncologist ordered a set of blood and urine tests, and a chest X-ray. Diagnosis: a touch of pneumonia. So now an antibiotic has been added to the mix of medications I have to keep track of, and yet another one that can cause drowsiness, as if I needed that.

Friday, July 17, 2009

One Week Into Chemotherapy

I am currently swallowing pills that come in nine different bottles.

Of these, seven are prescription-only; two are OTC.

Only two are actually a part of the chemotherapy regimen.

Two are for pain management, but the pain being managed is neither a symptom of the cancer, nor a side effect of the chemotherapy; it is rather continuing fallout from the back surgery or the radiation therapy or both.

The remaining five are addressing chemotherapy side effects, or were introduced early in the game to head off expected effects.

Other than walking, I am not doing much in the way of physical therapy. I am reintroducing, very cautiously, some of the lighter exercises. I do not want to experience the muscle spasms again. The muscle relaxant appears to be helping with that to a substantial degree.

I hesitate to claim that the situation has stabilized, but if so then this is what I will take into my next formal meeting with the oncologist, on Thursday of next week.

Wednesday, July 15, 2009

Physical Therapy On Hold

This morning arrived with more muscle spasms in the lower legs and feet. Since I haven't done any of the physical therapy exercises since Saturday, this now appears to me to be rather a side effect of chemotherapy. In any case, after consulting with the oncologist, the physical therapist declared my therapy on hold for now (thus transforming the situation de facto into the situation de jure). The problem will now be to determine exactly what to do in order to avoid suffering too much regression in this area.

The muscle spasms are now being treated with a muscle relaxant (orphenadrine citrate). I will also be getting an additional 500 mg of calcium daily, since a blood test revealed a deficit on that.

Tuesday, July 14, 2009

A Confusing Situation

I was delaying adding a new post until certain things began to clarify themselves, but that just does not seem to be happening, so I guess my only choice is share the chaos.

The symptoms and/or side effects that I am experiencing, resulting either from the chemotherapy or the physical therapy or both, so far include increased fatigue; intermittent joint stiffness/pain in the hands and elbows; pain and muscle spasms in and around the knees; and dehydration.

On Friday, in addition to beginning chemotherapy, I was given a new set of exercises to do, in addition to those I was already doing.

On Saturday, I worked myself pretty hard, doing all the exercises as well as doing plenty of walking.

At around 2 A.M. Sunday morning, I was awakened by painful muscle spasms in both knees. These lasted through most of Sunday, during which time I was confined to bed. It was a very bad day.

I canceled Monday's physical therapy session. I was able to do some limited walking, although it was still painful to apply weight to the knees. An ultrasound carried out on the legs turned up no blood clots, which is a big concern with Revlimid. Later in the day, I was visited by a home health care nurse to help review the situation. Out of the blue, she announced that my blood pressure was what she considered to be dangerously low; and that my heartbeat was irregular. She actually wanted me to go to the hospital emergency room. But since I was not experiencing anything like faintness, dizzyness, shortness of breath, or chest pains, I decided that this was an instance of defensive medicine, and instead set up an appointment with my primary care MD for Tuesday morning to take a look at this.

The situation with the knees did not change very much on Tuesday; maybe a little better, but still painful to walk. My primary care MD thought blood pressure low but still within the acceptable range; and an EKG revealed that the heartbeat irregularity is of a benign form. The oncologist is of course being kept informed of all this, and so far has not registered anything like alarm.

So there you have it. I am still headed down the chemotherapy track as planned. Wednesday's physical therapy session should be an interesting one, since it isn't clear to me how I can make progress from here.

Friday, July 10, 2009

Chemotherapy Begins At Last

UPS arrived this morning with the first shipment of the chemotherapy money drug Revlimid, so chemotherapy officially commenced at 10:30 A.M. EDT. I took a huge 40 mg dose of the steroid dexamethasone (ten 4 mg tablets), followed by a 25 mg capsule of Revlimid. For the 28-day cycle, I will take Revlimid once each day for the first 21 days, followed by 7 days off. I will take the 40 mg dose of dexamethasone once each week for four weeks. As of right now, the only observable side effect is profuse perspiration, most likely inspired by the steroid hit. I am expecting other things to begin happening as I continue to take the Revlimid, though.

It has been an eventful day, as the new lift recliner was also delivered. Big improvement immediately noted.

Thursday, July 9, 2009

One Of The Blogs I Like To Follow

OK, this is one of "those" posts, the topic of which is perhaps only peripherally related to the avowed subject of this blog.

Of the relatively few blogs that I follow regularly, one of my favorites is the Congressional Budget Office Director's Blog. The CBO's job is to place the fiscal aspects of the legislation being concocted by the U.S. House of Representatives and Senate under a microscope. It does so with almost always sobering and occasionally devastating results. The CBO is one of the best of the few delusion-smashing machines we have available to us. Many recent posts of course have as their topics the costs associated with the draft bills currently being created around health care reform. I'm claiming that's how this post is "related".

Wednesday, July 8, 2009

Seating Arrangements

Since I have returned home from the hospital, most of my time spent in the seated position has been on a carefully-crafted collection of pillows and cushions arranged on a rather low couch. This works, mostly, but is ultimately untenable.

Yesterday, I purchased a lift recliner as a replacement; this is the only model I was able to find that is big enough for my 6' 1" frame. Even with this, my feet dangle off the end of the footrest. I expect delivery before the end of the week.

This will also likely be where I will be seated once I return to work. The oncologists, knowing my normal work situation, are encouraging me to get back to it as soon as possible, assuming that the side effects of chemotherapy do not somehow combine to prevent it.

Speaking of chemotherapy, I am still awaiting the order for Revlimid to work its way through the respective bureaucracies of the insurance company and the specialty pharmacy. At this point, it seems unlikely that delivery will take place before Friday, if then.

Sunday, July 5, 2009

Pain Management

As it turns out, I was being over-optimistic about the pace of recovery from the side effects of the radiation therapy. What I subsequently learned was that, post-treatment, I continued to "cook" for awhile, and that the effects take three to four weeks to fade completely.

So, meanwhile, the rib/back pain continues on some level. This is being managed using oxycodone, in two forms. I get low-dose, 12-hour Oxycontin to provide a base, with so-called "breakthrough" relief provided when needed by Percocet, which is another relatively low-dose mixture of oxycodone and acetaminophen. I try to avoid using the latter as much as possible, owing to its rather dramatic push of the digestive tract towards constipation, but it is very nice to have available when I do need it.

No, there are no "highs" involved here; this is all quite low-dose biochemistry.

Friday, July 3, 2009

Some Comments On, Well, Comments

Having received complaints from some readers regarding their inability to post comments or even read existing ones, I decided to carry out my own investigation of the topic.

I was unable to reproduce the effect of being unable to read existing comments. If you are having this problem then I can't help you. Maybe this is another signal that you really should upgrade your browser to something more recent than Netscape Navigator 3.0? (Sorry, just couldn't resist a little sarcasm. Look, I'm still adjusting to some new medications here).

The process of posting comments does seem somewhat problematic to me. The absolutely easiest thing to do is to use the "Anonymous" profile, the main drawback of course being that your post will be labeled as being from "Anonymous". You will have to otherwise identify yourself in the text of the comment itself. Even this did not work for me the first time I tried it; I had to post the comment twice to make it "stick" for some reason.

You can use one of the other identity-based profiles, which would in turn involve having or creating a Google/AIM/OpenID/etc. identity. I can certainly understand not wanting to go to the trouble of creating any such new identity just to make it possible to post comments to this blog. But if you've got one already, you can use it.

That leaves us with the "Name/URL" profile. For this you can use any name, and you can leave the URL blank if you don't have one you can use. Again
this did not work for me the first time I tried it; I had to post the comment twice. This profile seems to me to be maybe the best alternative for most people.

Finally, I would point out that, since comments are readable publicly (they really are, trust me), they shouldn't be used to send me any messages of a personal nature. E-mail, snail mail, and telephone are still the best ways to do that. The subject of a comment should be the same as that of the blog post being commented upon.

Thursday, July 2, 2009

A Chemotherapy Speed Bump

The goal of chemotherapy for me at this point is to kill enough of the cancerous blood plasma cells to make stem cell transplantation feasible. This "induction therapy" is currently scheduled to last for three or four "cycles", each cycle lasting four weeks.

Typically, the core drugs used in induction therapy are the steroid dexamethasone, which I have actually already been taking continuously since my first day in the hospital, in varying quantities; plus one of Thalomid, Revlimid, or Velcade. I was aware that the oncologist intended for me to use Thalomid; but I was unaware, until recently, that one of the major possible side effects of Thalomid is peripheral neuropathy, which involves numbness and/or tingling in the hands and feet. Given that I am already struggling with numbness in the feet, this possibility seemed unacceptable to me, so I pushed back on Thalomid. So now I am to be given Revlimid instead.

All well and good, except that this switch cannot be made instantly. One does not walk into the corner pharmacy and walk out with a bottle of one of these drugs. Their manufacturers make them available only via restricted programs involving specialized pharmacies that dispense them in single-cycle quantities only; the consumer must sign legal documents agreeing to many things regarding their usage. Given the Independence Day holiday weekend, the process of beginning to make the switch will have to wait until Monday. So for now I continue to be in a holding pattern.

There is a possible future post that could tie this in with the subject of health care costs. These drugs are very expensive. A single cycle's worth of Revlimid is probably in the range of $5000-$6000, as near as I can make out at this point.

Wednesday, July 1, 2009

The Beginning of Home Physical Therapy

Monday I received my first visit from the new physical therapist. This session was mostly just to give her a chance to test me on strength, range of motion, walker management, etc. Today I received a set of new exercises to replace the stale ones left over from my hospital stay. Each exercise is designed to strengthen a specific muscle or muscle group of the legs; to improve my control over foot placement; or to work on the heel/toe motion to replace the plodding into which I sometimes lapse. In other words, nothing particularly noteworthy going on here.