Jumping Back to Life

The story, which I trust is an urban legend, purports to be of a serious experiment performed at some hopefully non-existent Ohio college. The researchers claimed that if they dropped a frog into boiling water, the frog, as you might expect, instantly jumps out. However, if the frog is gently placed in room-temperature water, and heat is oh-so gradually applied, the frog never even attempts to escape. The horrifying result is something that I'm sure has been given an attractive name by French chefs. Like pâté de foe gras. Or, more probably, given all the hits to my brain over the last two years, my information is wrong. Perhaps the study didn't come from Ohio State University at all, but was recently found inside a Nazi dispatch case in a cave in Bavaria.

The bone damage done by multiple myeloma is often like the sea gently lapping at a big rock: each wave by itself does little, but after a few thousand years there's no more lapping because there's no more rock. Myeloma often works the in same way, so slowly eating away at our bones that we don't immediately notice the erosion. When the inevitable début comes, it can come as a complete surprise. Such as when a pelvis break dropped me instantly to the ground in 1998.

Now I know what "insidious," as in "of insidious onset," really means. Even the freest nation on earth can be ruled by malefactors of great wealth if the erosion of liberty takes place sufficiently slowly. By the time the continuing loss becomes obvious, it can't be stopped.

In a larger sense, however, myeloma is different. Early discovery offers no survival advantage. Indeed, early treatment is more likely to shorten life rather than extend it. Early treatment is by definition unnecessarily risky. What other cancer is like that? Imagine our poor frog — even if he manages to jump out of the experimental pot as soon as he discovers he's in it, he'll be sautée de grenouille by nightfall.

Myeloma is a tale of heroic but temporary victories amidst a string of increasing losses. Of course, I'm not solely referring to direct, physical damage, but also to indirect damage wreaked on everything else. Myeloma and its chemotherapies spare little. Declining vision keeps us inside at night, neuropathy and spinal damage stops the dancing, our ears ring, our kidneys fail, our immune systems offer little protection from disease. Relationships are stressed. Eventually, everything in life becomes, in a sense, malignant.

In the fall of 2009, while circling in the bowl, exhausting my every avenue of escape, a lifeboat was unexpectedly thrown to me. I scrambled in without hesitation. Luckily, during the descent I missed the rocks at the bottom of the veritable Niagara Falls of treatments, an allogeneic transplant from a matched but unrelated donor. Through the increased depth of field available from the lens of recovery, I have become more aware of the subtler losses sustained over the last twelve and a half years. I don't dwell on them. What I do dwell on are the enriching qualities of life being returned to me. Because the individual losses were seemingly small and were accrued slowly, I had forgotten how diminished my life had become.

Survival brings with it existential redemption. The accelerating return to importance of life's mundane challenges is annoyingly wonderful.  In my illness, they simply weren't important. Now I find myself coping with a raft of them: helping a daughter who is struggling with algebra, extracting a much-needed refund from a reluctant IRS,  repairing water damage to the stucco, preparing the garden for this year's tomatoes, scheduling a long-deferred refraction. All these are signs of a new and greater normal that is being formed, one that reflects the end of a long period of fundamental disturbance and marks the beginning, I hope, of a sustained period of simple living.

Four Beautiful Words!

The words are, "The surgery went well!" Not only do they tell you that you are likely to get a good result, but if, like me, you've already had a few surgeries and a couple of transplants, including an allo, in the darker corners of your mind you're wondering if you are going to wake up at all. These beautiful words also tacitly tell you, you're still alive!

The kyphoplasty on lumbar #3 restored a bit of my old height, and I am no longer in serious pain or bending at the waist when I walk. I was in hospital many hours, perhaps eight, before I heard those great words (everyone was running late — the surgery itself only took an hour). I've been smiling, as wide as the Bell's Palsy permits, ever since.

Kyphoplasty is miraculous when compared to older surgeries, so, trust me, you'll want it. Kyphoplasty, usually performed on an out-patient basis, often produces a genuine fix. Your skeletal height is restored. The disks are not damaged, so your spine will still be springy, leaving you less apt to suffer future compression fractures.

The operation requires general anesthesia. Two remarkably small lateral holes are drilled, one on each side of the collapsed vertebra. The next step is something your doctor is unlikely to mention unless you put a hammerlock on him: the fracture will have to be broken again in order to fix it. That is why kyphoplasty must be done within about six months of the fracture. Because bone heals over time, the longer the surgery is delayed, the harder it is to break. See your doctor right away!

Another thing surgeons don't usually mention is that a long-term anesthetic is often pushed inside before closing, enabling them to tell you with a straight face that the next day you'll feel little discomfort. Unfortunately, the stuff wears off in about four days. Then you might suffer a bit, but not nearly so much as you would have otherwise (you've already been given a few days of peace in which to heal up). This time the anesthesiologist didn't apparently give me the long-term anesthetic, so I hurt today more than expected. Nevertheless, a little Vicodin and I'm all smiles. The two small bandages on my back can be peeled off in five days, leaving little or no scaring.

I suffered greatly during and after the allogeneic transplant, but I must say, a lumbar compression fracture, when untreated or untreatable, can ruin your life. So my advice is, if you want to lift your spirits, before or after surgery, make sure the bottle doesn't weigh more than a couple of pounds.

The Joy that Dare Not Speak its Name

An allogeneic transplant from a matched but unrelated donor is the most punishing procedure in all of medicine. The procedure is especially punishing for multiple myeloma patients: a substantial fraction of us die, not from the cancer, but from the transplant itself (in their statistics, doctors refer to this as "Transplant-Related Mortality"). When I was first diagnosed, I read an article in the New Yorker about the transplant experiences of Courtney Stevens, a sophomore in high school, and Tamar Lowenstein, a corporate lawyer with three children, entitled A Healing Hell. I recommend it. (My experience was more like Tamar's than Courtney's.)

For many reasons, this January was awful. For one, I spent the month trying to accept the unthinkable — that I had endured the horrors of an allogeneic transplant for little benefit. Part of me knew that I once more had to adopt the mindset of someone who had only a short time to live. I also had to accept that a good portion of my remaining time would be difficult. I pleaded desperately with my doctor to tell me what I already knew, that the transplant had been a failure. Perhaps if he said the words, I could resign myself to that fact despite all the kicking and screaming that was going on in in my head.

I had good reason to try to accept failure. Look at this chart:

The blue line represents the outcomes for an allo from a matched but unrelated donor

Here is what the chart says:

"A multi-center study published in 2005 of 229 patients (median age 52 years) undergoing non-myeloablative HCT for multiple myeloma found a three-year overall survival of 41% and a progression-free survival of 21%."

The chart says that less than half of us survive one year. Compare that dismal forecast to yellowish line, which represents the considerably better outcomes for a first-time autologous transplant.

But it gets worse. There is a vast difference between transplants performed for a chemo-sensitive individual and those who, like me, are chemorefractory. Our two-year survival is estimated to be only 25%. And to think I had the temerity to anticipate cure!

During my fight with myeloma, I have had amazing luck. Every one of a large string of obstacles to transplant had to break in my favor. No one has any right my kind of good luck. It's irrational to count on it.

I steeled myself for the results of tests from blood taken on the 24^th of January. The December results were depressing.  Although I was of type kappa, I was seeing a rise in lambda! I would tell myself over and over that the charts no longer showed a resistant cancer but, rather, showed a struggle between my new immune system and the cancer. They seemed to be equal adversaries in a tug-of-war. I thought, as my new immune system matured, it might become more effective in the struggle. I wanted to believe there was hope, but, deep down, I just couldn't. Was it time to purchase that cemetery plot?

And then came this on the 27^th:

Will you look at that drop!

I was stunned. Girded for the worst, I was staring at the best. Kappa was clearly crashing, while the other two measurements were headed in the right direction. Additionally, for the first time in I don't know how many years, my metabolic panel was completely normal! Agape, starring stupidly at my paper in my hands, I was unable for a time to grasp what I was seeing. Although my CBC wasn't perfect (my red blood count was a little low), I saw nothing to lose sleep over.

I almost missed one of the more significant results. For me, alkaline phosphatase has been, since the beginning, a reliable indicator of on-going bone damage. The number didn't register at first because it wasn't flagged. That's because it was completely normal — for the first time since my relapse years ago! In December, my alkaline phosphatase suggested that the cancer was tearing me up. To prove it, I developed a compression fracture and was smarting from several rib lesions. The tearing up has stopped. Now I can heal!

Here's my theory (as inflicted on my doctor):

"I think the crash seen in the chart is unlike one from chemotherapy. In that case, the chemo destroys a fraction of the sensitive cells, leaving the rest to reproduce and replace the sensitive population. In an allo transplant, the new immune system destroys some fraction of all the malignant cells continuously. This is a completely different mechanism. There are no immune-system-resistant cells. The only reason a cancer survives is that it can reproduce as fast or faster than the new immune system can kill it. The chart shows simple arithmetic.

"For example, suppose each malignant cell can reproduce once in a given time period (let's call it a cycle). Then every cycle, absent a killing process, the cancer would double in size. However, if the new immune system can cut the number of malignant plasma cells in half each cycle, the tumor burden would neither increase nor decrease: the resulting curve would be flat. If the immune system destroys 3/4 of the total every cycle, then the cancer would drop by 1/2 each cycle. Which is why the reduction isn't linear once it gets going (what goes up exponentially, goes down exponentially). For that reason, I don't think the crash we are seeing is going to level out. The likelihood is that I'm heading for remission (at minimum). Perhaps even toward the C-word."

Looks Like Cure to Me!

There's nothing wrong with wishful thinking (that is, hope) when it is backed up by uncontradicted data. I can happily revel in it.

The heavy weight of defeat is lifting from my shoulders. The ordeal of the transplant was NOT a failure. OMG, I said to myself, I am going to have to find a way to send four children to college! My garden will have tomatoes this year! I don't need a cemetery plot! My fabulous good luck does hold!

Today, no matter how carefully I listen, I can't hear a fat lady singing anywhere.

What, Two More Cancers??

Some Other Poor Sod

I was diagnosed last week with both squamous and basal cell carcinomas. Apparently, multiple myeloma and an allogeneic transplant didn't challenge me enough. Patents with allogeneic transplants are urged to be examined by a dermatologist twice a year. I'm beginning to understand why.

Basal cell carcinoma is the most prevalent but least dangerous form of skin cancer (although, when neglected, basal cell can cause serious damage). Squamous cell carcinoma, the second most prevalent, can be more complicated and problematic. (The third most prevalent skin cancer is melanoma. ("You have, did you say, multiple melanoma?"). The shark bite on my back was the result of melanoma.)

The squamous cell cancer, which is prominent on my right cheek, may have evolved from a common keratosis, which is ironic considering that it is generally associated with sun exposure and I am a sun-avoiding, vampiric, Morlock-type creature known to inhabit the innards of computers.

The cancers will both be removed by Moh's Surgery, the least disfiguring type of surgery. Apparently, the Moh's surgery team can do both at the same time. Not that I care much about having a beautiful back, but avoiding a second date with the knife (for simple excision) sounded good to me. (I'm not even counting an upcoming kyphoplasty. Perhaps I need to make new friends.)

In Moh's, injections of a long-term anesthetic means only having to endure the nasty pinpricks once (I am told that the reason pain killers sting is that they are acidic: why can't they — and, especially, dentists — add a base to the shot to achieve a neutral pH?). A cup-shaped layer of skin is removed around the visible cancer, then frozen and sectioned in two dimensions. A pathologist then examines the margins under a microscope. If cancer cells are found, their exact location is marked on a map of the cancer. The surgeons then remove another layer of skin and cancer, but limited to the area where cancerous cells were found. The procedure is then repeated until no evidence of cancer remains. In general, Moh's results in less damage and disfigurement than does traditional excision. A plastic surgeon then "repairs" the damage.

Moh's surgery is not appropriate for every type of cancer, but when the cancer is on the nose, ears, eyelids, or other prominent features, Moh's may be an appropriate choice.

Caution! This squamous video is not for the squeamish. I mean it. You've been warned!