Monday, June 29, 2009

Weight Loss

I consider my ideal adult weight to be 180 lbs. A couple of years ago, I let it drift up to 190, but felt a bit bloated, and a step slower, so I worked it back down to 180, mostly with meal-time portion control and an uptick in the workout regime, and was happier when I got there.

Current weight: 150 lbs. I'm a shadow of my "real" self. This is driving my wife crazy, since the loss seemed to be continuing under her care. So now I am getting lots of between-meal snacks and supplements. I think I might be developing some bad new eating habits here for the longer term, since I can now have whatever I want, in whatever quantities I want it, whenever I want it.

One thing I found interesting about my hospital stay was that there was absolutely no interest shown in my weight there at all. I was endlessly checked for blood pressure, pulse, temperature, and blood sugar; but I was not weighed on my way in or out, nor the entire time I was there, except once at my own request. The nurse had to move a bunch of stuff out of the way in an equipment room for me to reach the scale stuck in the back. It was clearly something they were not using much, if at all. I was weighed once by the radiation oncology team, as part of a more general how-are-we-doing check, but by then I was outpatient.

Friday, June 26, 2009

The Side-Effects of Radiation Therapy

It occurs to me that I have never really described the side effects of the radiation therapy from which I am now supposed to be recuperating.

I never experienced any of the effects on the skin and digestive tract commonly associated with radiation, at least not noticeably. No hint of nausea, thank goodness.

I did experience the fatigue. Beginning about three hours after each treatment, I would want to crash.

Because of the location of the target area, my lungs became irritated, and I developed a persistent cough. This would get worse when I assumed the prone position, so I began having trouble getting to sleep. I eventually gained some control over this problem using an ordinary cough suppressant and a room humidifier.

And again, because of the location of the target, nerves leading to the lower ribs also became irritated, causing constant low-grade muscular discomfort there.

I am hoping to be asymptomatic in all of these areas by this time next week, if not before that. If not, then I will have some complaints for the medical establishment.

Thursday, June 25, 2009

The End of Radiation Therapy

"Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

-- Winston Churchill

This afternoon, I completed the last of my radiation oncology therapy treatments. I thanked the technicians who have been working with me for the past two weeks for the kindness and consideration they showed me during the whole process, but then told them that, frankly, I was glad to see the back of them. I think they understood.

Now I have a week's break to recuperate, before the chemotherapy campaign begins.

Wednesday, June 24, 2009

Out Of The Hospital

This is the very succinct e-mail I sent out on Monday, June 22, regarding getting checked out of the hospital on Friday, June 19; and the events of the subsequent weekend.

Please forward as appropriate...

I was checked out of the Christiana Hospital around 2 P.M. Friday. The weekend was spent adjusting to the new surroundings, getting the home safety check, getting home PT set up. Received a few visitors Saturday afternoon, but spent a quiet Sunday just doing my exercises. The deck is good for walker practice, with lots of turning maneuvers.

This week should wind up the radiation therapy, and then the chemo will begin.


The "Background" E-Mail

I sent this e-mail to Huong for forwarding on June 15, once the recovery was under way. I wanted to clear away some of the fog of war, since it seemed to me at the time that there was a good deal confusion out there around exactly what this multiple myeloma was all about.

I received a good many kind compliments about this e-mail, so I think it accomplished its task. It did seem to help quite a few people gain a better understanding. Dr. Wien even told me I did a good job with the biology parts. So I'm maybe a little too proud of this one.

Please forward as appropriate...

"The death of one man is a tragedy. The death of millions is a statistic."

-- Joseph Stalin

Since my theraputic regime is pretty much just set for awhile, with incremental daily progress only to report, I thought I'd try to fill in with a little background for the interested (or maybe the bored).

1. If you've never heard of this "multiple myeloma" stuff before, then that makes two of us. It is not on the cancer hit parade. In terms of percentage of total cancer cases, it is in the very low single digits. President Obama did not mention the need for a major assault on multiple myeloma in his speech to the AMA today.

2. If you look at the extremely vague list of putative risk factor groups, the only one I would seem to fall into personally is the "male gender". Men get this more than women. Caucasians get it more than Asians, but less than African-Americans. There's really nothing there. You would have to say that the fact that I have it is an act of God, if your personal theology runs along such lines. Otherwise, it could be a "tragedy", or just a "statistic". For what it's worth, I'm personally of the latter persuasion. I was more or less doing all the "right" things that you are supposed to do, in terms of diet and exercise and avoiding high-risk lifestyle choices. You should be doing that too, but don't imagine that you are thus somehow immunized from every bad thing that could happen. I am not depressed or bitter about this, it is just reality.

3. Although most of you are familiar with the fact that one of my vertebrae was undermined by a tumor, this is not "bone cancer". Brief biology review: In the bone marrow, stem cells create the white blood cells that fight off infection and disease. There are T-cells and B-cells. The T-cells are the active "soldier" cells that roam around and swallow bacteria and other aliens that get in. The B-cells just kind of hang around until a particular type of antibody is needed, at which point they create the blood plasma cells that can create that type of antibody. What is happening to me is that my B-cells are producing plasma cells that don't do the right things. They don't make the right antibodies in the right quantities, and they don't die when they are supposed to. One of the things they do do is to glom onto the surface of bones, where they interfere with the maintenance operations that keep the bones in good repair; so deterioration is not repaired and gradually accumulates. And as the gloms accumulate, which they do because these cells are not dying but increasing in number all the time, lesions and tumors form.

4. The other main area of damage is to the immune system. The bad plasma cells crowd out the good ones, so my ability to produce the right antibodies at the right times and in the right quantities is compromised. So if for example H1N1 comes to town, I would be in the group with increased risk on that front.

5. Because these are blood cells that basically go everywhere, there is the chance that I have bad ones elsewhere than in the spine. If so, they are not necessarily doing any active damage. They can hang around in the lymph nodes and bones for months or years, not doing anything, and then suddenly become malignantly activated by triggers not yet understood. So even if at some point I am declared "cleared" of the bad stuff currently visible, I will basically continue to have to be "watched" for the rest of my life. I'm being "treated" for multiple myeloma, not "cured". It's my new ongoing reality.

6. The bottom line is that we need to start killing off these bad plasma cells, hopefully in a targeted way that leaves all the "good" stuff as intact as possible. That is what the current radiological, and upcoming chemical, therapies are designed to do. So that's what we're doing.

7. If things go a certain way then it may become necessary to carry out a "stem cell transplant", which is basically a complete reboot of the entire immune system, beginning with the stem cells. Let's not talk about that yet. That would be another note as long as this one already is.

That's all for now...


The Beginnning of the Recovery

I sent this e-mail to Huong for forwarding on Friday, June 12. It takes up the subject of the initiation of the radiation oncology and physical therapies. There is a huge mistake in this rendition: The radiation guns are really only turned on for 40-50 seconds.

I am composing this from GHQ in Christiana Hospital room 7E08, which is has been my home for some time now, as you are all aware by now. Huong will forward to all interested parties (and then some) I'm sure.

My new T8 vertebra is healing, slowly. I still need a bit of Percoset for it now and again if I work it hard enough. The Valium injections have been eliminated entirely, and the steroid injections are being dialed way down as well. No more earth-shattering spasms, thank goodness. I am also out of the special self-inflating boots that I was wearing to prevent the formation of blood clots in the legs, and I'm also unhooked from the portable heart monitor.

Yesterday the physical/occupational therapists worked me over pretty good. Since the collapse of T8 essentially deprived me of the use of my legs for a week, I am really back to learning how to walk again. My leg strength is pretty good; the main problem now is stability, getting the muscles to work in a coordinated fashion to move forward without lurching all over the place. The walker is helping me do this. I also need to work on upper body strength as well, since I was flat on my back for a week and everything kind of atrophied. The overall deterioration of all muscle groups happens more quickly than you might think.

This afternoon, I received my baptism of radiological fire. The initial set up process took quite a while, because the radiation is carefully targeted to the desired spots, not just fire-hosed over everywhere. I was carefully lined up with lasers, and then little permanent registration marker tattoos were added to places on my chest and abdomen. These will be lined up each time with what is showing on the scanner being used to aim the radiation guns. Once everything is set up, the switch is thrown, there is 15-20 minutes of buzzing, you get kind of warm, and then that's it. I'm supposed get nine more of these sessions before they go back to assess the overall effects, and determine whether anything more needs to be done. When I got back to my room and went to the bathroom, my urine seemed especially warm coming out. Before I'm done, I can expect some "sunburn" effects and maybe some permanent hair loss in places, maybe some stomach upset/nausea effects, and definitely extra fatigue. But so far the experience hasn't been a particularly negative one. We'll see.

So between the radiology and the PT/OT, my life seems kind of programmed for the next couple of weeks. I won't continue to bore you with the same old details; I'll just update if some new dramatic effects come into play. That's all for now...


The Balloon Kyphoplasty

The balloon kyphoplasty procedure I underwent on the evening of Tuesday, June 9, 2009, to repair my T8 vertebra, is one of the reasons I mentioned in the introductory post regarding why it's much better to be me today than it would have been in the past.

Once Pain had been driven away, his brother Fear stepped forward to replace him. He slipped his noose around my neck, cinched up, and soliloquized thusly:

"Back surgery. You know what that means. You'll be sliced open like a croaker landed on the Cape Henlopen pier. Buckets of blood. The surgeons will try not to hack at your spinal cord while they manipulate the shards of bone."

In the event, owing to the balloon kyphoplasty, nothing of the sort ever happened to me. All I ever had to show for my surgery was a large needle hole, which has healed up nicely.

The Hospital

I entered the emergency room of the Christiana Hospital on an ambulance gurney during the evening of Thursday, June 4, 2009, and did not emerge again, through the front lobby doors, in a wheelchair, until the early afternoon of Friday, June 19.

I have not yet set foot in the associated Helen F. Graham Cancer Center. My radiation oncology treatments have all taken place in the main hospital building.

Tuesday, June 23, 2009

My First Attempt At A Larger Account

I sent this e-mail to my wife, Huong, on Thursday, June 11, to be forwarded to everyone. It was my attempt at the time to tell the larger story of what had happened to me.

Huong has asked me to write this full account to send out to everyone who might be interested, instead of having to tell the same story over the phone to everyone over and over... So here goes.

On Sunday April 19, I injured by lower back (lumbar region) while working in the garden at the Avondale house. I was on my knees, and rotated to my left to pick up and move to the right a stone that was heavier than I thought. I heard a "crunch" and felt a big twinge. After a brief break, though, I didn't feel any particular debilitating pain, and actually continued to work. Over the next couple of days, the only ongoing pain was felt at the junction where the right hip joins the spine, and again it was nothing that prevented me from more or less normal activities. I left things go like this, but was being very careful not to do any lifting anything with the back -- legs and abdomen muscles only now. At this point, I began to experience abdominal pains, in a band through the lower ribs around to the back. I attributed these to the extra strain I was placing on these muscles, and assumed they would get used to things in time. I did go to the doctor, who ordered lumbar x-rays. These showed nothing untypical for a 53-year-old male: a little degenerative disk disease, some osteoarthritis. Nothing indicating particular injury. She prescribed some PT, which I delayed seeking since we were headed to the beach house for awhile.

At the beach I did a lot of vigorous spring cleanup work. My abdominal pain symptoms got worse, and I began having genuine trouble getting into and out of chairs and bed. Sitting in a chair for more than a half-hour or so was becoming painful. Memorial Day weekend was particularly bad; I think I spent a good portion of the weekend resting in bed. I also experienced an almost complete loss of appetite, and began losing weight rapidly. Returning to Avondale, the doctor gave me muscle relaxants for the abdominal pains, and ordered thoracic x-rays, suspecting problems there. The results showed something that led her to order a bone scan (dye-assisted) for last Friday, to check to for fractures. I began my PT program the same Wednesday. The next day (last Thursday) started out well. The abdominal pains had decreased, and I was able to do some of my PT exercises. Then, in the middle of the afternoon, completely out of the blue, I began to experience waves of terrible muscle spasms. My diaphragm would contract violently, yanking down on the stressed rib muscles, followed eventually by two thunderbolts shooting down both legs all the way to the toes. As these continued, I began to lose strength, feeling, and control of my legs. Just at that point, Huong called to ask me how I was doing, and I told her that I thought (incorrectly) I was having "seizures", and might belong in the hospital. Soon thereafter, our neighbor friend Dr. David Wien and Mai-Anh showed up; he had been alarmed by the term "seizure", which implies unconsciousness. Seeing my symptoms, he called 911, and I was transported by ambulance to the ER at the Christiana Hospital in Wilmington. The ambulance personnel aren't permitted to administer any meds, so they were forced to watch as I spasmed painfully the entire journey. I arrived at the same time as a collection of people who had been involved in a multiple-vehicle accident on nearby I-95, and the scene was barely controlled chaos. I was stuck on a gurney in a hallway with a bunch of drunken injured people. Mai-Anh followed me in and is due great credit for badgering the overwrought ER nurses to take a look at me. Since they could observe my continued uncontrollable spasming, I got a couple of Percosets to tide me over until they could route me into an observation ward containing actual MDs. The resident who first observed me ordered up unlimited IVs of Valium to calm the spasms, and rounded up the supervising MD, who seeing the same symptoms put me on the fast track for an MRI and panoramic spinal x-rays. The MRI requires absolute stillness, and the staff had no Valium, so that caused some further delay to get some more into me, lest I wind up bouncing around the inside of the narrow MRI tunnel. It lasted just long enough, as the spasms resumed just as I was being pulled out.

The results of these tests got me a slot for the rest of the night (it was actually almost dawn Friday by now) in a ward for head and spinal trauma victims. Later in the morning, a resident came around to inform me that my spinal cord was being inflamed by fractured vertebrae. He began adding a steroid to the Valium to reduce the inflammation, and at that point I was becoming much more comfortable. The fractured vertebrae were CAT-scanned for a closer look. Some time later, I was approached by a neurosurgeon -- but accompanied by an oncologist, who informed me that the "fractured" vertebrae were actually being collapsed from within by bone marrow tumors. His tentative diagnosis was multiple myeloma, which is a cancer of the blood plasma cells that are created in the bone marrow. Many other vertebrae are showing surface lesions that would indicate this as well.

Nothing much happened over the weekend. On Monday, bone and marrow were extracted for biopsy, the final results of which are still pending, but the oncologist would claim tremendous surprise if his hypothesis is not borne out by this. Late Tuesday night, I underwent a procedure called "balloon kyphoplasty" to repair the badly-damaged T8 vertebra. I was fully sedated for three hours, during which time a needle was inserted into the vertebra; this inflates a balloon which expands the vertebra to its normal dimensions, and into which a hot cement is injected. This simultaneously destroys the tumor and fills the cavity, leaving the vertebra closely resembling its intended size and shape. This procedure was evidently a complete success; I am getting a little Percoset now and then to ease the pain fallout.

Wednesday, I met with PT, occupational therapy, and radio oncology personnel to scope out the plans for the immediate future. I am able to stand up and walk (very slowly) with aid; my main problem with this right now is gaining forward-backward stability. I can get into and out of a chair (again very slowly). I get my walker today (Thursday). I think they want to get me out of here before the weekend rush begins Friday. The oncologist assures me that a session of ten or so low-energy radiation treatments should kill the remaining small tumors and lesions. All of this can be done on an outpatient basis. We'll need to make some adjustments at home to allow me to resume normal work activities (e.g. I think I will need to switch my office to the first floor, since it will be quite a while before I will be able to take any stairs).

On the whole, there appears to be plenty of room for optimism that I can get through this thing eventually. Obviously, I am going to need a lot of help from a lot of people, which I can hardly hope ever to repay adequately. The many many expressions of love and support I have received from many of you have been, and I am sure will continue to be, a great encouragement to me.

Thanks once again to one and all...


The First E-Mail From My Hospital Bed

This is the first e-mail I could find that I sent out after going into the hospital on June 5, 2009, addressed to a couple of my siblings. This is part of the "archive" purpose of the blog. I will continue to add posts containing these, interspersed with much more complete accounts that I will add as I go along.

Cindy and Jay,

I will rely on the discretion of the two of you, in terms of how far the following should be disseminated at this time. Probably you should avoid disturbing the elders, at least until the situation becomes clearer.

Thursday afternoon, while awaiting the results of a battery of blood tests and getting ready for a P.T. session and a bone scan Friday, I suddenly began to experience waves of painful and uncontrollable spasms that began with the violent contraction of the diaphragm and some of the rib muscles, and eventually sent two thunderbolts down both legs, all the way to the toes. A neighborhood doctor friend came over to see what was happening, and immediately called 911. I was taken to the ER at Christiana Hospital in Wilmington, where it took several hours for the seriousness of my situation to become apparent enough to the big machine to cause me to be routed to an area where things started to happen. I was given unlimited Valium to calm down the spasms and effect pain relief, and eventually given an MRI and a bunch more X-rays. I was given a bed for what was the rest of the night, and steroids to further calm things down. Friday morning, a resident came around to tell me that there appeared to be some bone spurs bothering some of the nerves, plus at least one and possibly two compression-fractured vertebrae, and that my case would be taken over by a neurosurgeon. I was moved to a room in the neurological surgery wing, and given a CAT scan. Friday evening, a neurosurgeon and oncologist stopped by tell me the true story. The "compressed" vertebrae are actually being undermined by tumors. Many other vertebrae show very suspicious spots. They are taking a bone marrow sample for biopsy Monday morning. A variety of other tests must be run to determine the best course of action, but it seems likely that both surgery and some form of radio/chemotherapy are in my near future.

I don't quite know how to end this e-mail, since I doubt that it has sunk completely in yet, but it appears that I may now have to fight for my life, assuming we caught this early enough to even make that still possible.



Welcome to the Borrowed Time Zone blog. My name is Mark Shaffer. Depending on mood, season, and social events, I reside either in Lewes, DE or Avondale, PA. Professionally, I work as a software developer for JDA Software, Inc. I am an adopted member by marriage of a large extended family of Vietnamese-Americans. And I have a cellar-full of wine that needs drinking.

Recently, though, I have been made to adopt a new role, much against my will: I am a man whose spine has been badly damaged by multiple myeloma, a relatively rare form of cancer that affects blood plasma cells.

The purpose of this blog is two-fold. The primary purpose is to attempt to accommodate the many family members, friends, and co-workers who seem to want frequent updates regarding my status and experiences. I have attempted up to now to accomplish this using e-mail, but the whole thing kept breaking down in various ways, so I decided that a blog was the right way to do this.

The secondary purpose is merely to have an archive for all the blather on this subject that I have already produced to date, and which I will undoubtedly continue to churn out in the future.

As far as the title of the blog goes, I selected it for two reasons. First, no one else had taken it yet. But second, maybe I'm over dramatizing here, but it seems to me that, for most of human history to date, I would not have had much of a chance to last long. A man with a back broken by cancer, who had lost the use of his legs, might have been given powerful narcotics to ease his excruciating pain on his way down, but I suspect that in many cases, he would simply have been granted a swift mercy killing. I know, we have created a tremendous number of terrible problems with how we have arranged life on this planet in the twenty-first century. But one of the very best reasons to be alive today is that the scenario I just described above didn't have to happen to me. The critical damage to my spine has been repaired, and I am learning how to walk again. The cancer is being vigorously attacked. I have a chance -- an excellent chance, really -- of returning to those who have known me in something resembling the form they remember before I became so ill. I am the beneficiary of thousands of hours of tedious labor carried out by anonymous researchers and technicians in the dreary sub-basements of the Scientific Method. The results of their work had to be tested by volunteers with multiple myeloma, some of whom lost their personal battles with the disease when someone's Pretty Good Idea finally fell apart. To them all, I pay the tribute of attempting, in my deeply flawed personal way, to make the very most of every additional moment of life they have thus purchased for me by their sacrifices. From now on, I am living in the Borrowed Time Zone.

One more thing. I am not so self-absorbed as to be totally obsessed by this thing, constantly focusing myopically on the minutia of my disease to the exclusion of all else. The world is still just too interesting a place for me for that to happen. So, occasionally, I may post something that seems unrelated, or only tenuously related, to the stated purpose of this blog. If you see one of these posts, and you don't like it, then wince, cut me some slack, and wait for a better one to come along. Rest assured that the primary focus will continue to be my battle with multiple myeloma, here in the Borrowed Time Zone.