Gavin

Final entry?

Sat, 26 Jan 2008 05:41:31 GMT

I am officially declaring closure, if not for my illness itself, than for the blog that has chronicled it. This page has, thankfully, outlived its original purpose, of keeping friends and family updated as to the status of my health. Day-to-day, I currently feel fantastic, as I actually have for months, or at least since mid July, congruent with my recovery from the original laminectomy in late June. And while that is to be celebrated, it is not also to be documented, at least not at the level of detail, frequent updates, and presumed importance that a blog commands. So for anyone out there who is still reading this and waiting for closure, I’m calling this the final entry, unless or until changes in my medical condition warrant otherwise.

My official medical condition remains that, as of my Nov. 30 appointment interpreting the results of a Nov. 27 PET scan, my diffuse large B-cell lymphoma is currently in remission. If no relapse occurs for the next five-plus years, which is plausible though hardly assured, then my understanding is that this remission is effectively permanent, and that I am as close to “cured” of this form of cancer as one can legitimately claim to be, as a matter of medicine, semantics, and epistemology. If there is a relapse – if this form of lymphoma returns – than the remission will have been only temporary. I would then have recurrent or refractory lymphoma, which is also, potentially, treatable, though the stakes are in that case higher and the odds somewhat longer. For instance, refractory lymphoma was by definition not responsive to the initial chemotherapy protocol, and a different batch of drugs must be devised to treat it. There are also issues with lifetime doses and accumulation of certain chemotherapy drugs (most obviously, any anthracycline, like Adriamycin, which causes cardiotoxicity), which further limits second-line treatment options.

Regardless of the ultimate outcome of this form of lymphoma, evidence suggests that I am at a relatively minor but statistically increased risk for leukemia, as well as for certain other types of cancers, following this bout with lymphoma and treatment therefor. So carpe diem, and all that.

On a brighter note, I am, on a day-to-day basis, giving this illness little thought at all. I note few discernible effects from the original tumor, as, honestly, has been the case ever since I recovered from the operation to remove it. My daily limitations continue to be physical in nature; most notably, and annoyingly, I can’t run. Big picture, I have some continued weakness on my left side, which manifests primarily as difficulty locking and placing great weight on the left knee (as one would for running). I can bicycle, which I have been doing a great deal (I am on pace for nearly 100 miles’ bicycling this week), and have been using the elliptical trainer in the Reed sports center with both fervor and enthusiasm.

The inability to run (either qua running, as in running marathons, or in connection with any sport that rewards running around and falling down, such as badminton, Frisbee, softball, and so on) is, honestly, profoundly frustrating. My weakened leg strength would also make hiking on anything other than easy to moderate terrain, particularly steep uphills, still challenging, and my legs start to become uncomfortably tired after around two hours simply when walking around town on flat pavement. Big picture, taking it easy while running errands is clearly preferable to being dead of lymphoma at age 25… but from another perspective, and considering that a year ago I was running 30-40 miles a week (and biking at least as much) while training for my twelfth lifetime marathon, working through physical therapy while parsing my limitations rather than my split times clearly remains an adjustment. I am fundamentally hopeful that I can continue making progress on this front, and can, in time, return to something of the level of physical capability that I have previously enjoyed.

So that is where I stand, both medically and physically. Philosophically, I keep coming back to an interview with University of Oregon professor and author Ehud Havazelet that appeared in The Oregonian a month ago. (Havazelet’s first novel, Bearing the Body, was published to wide critical acclaim last year.) Havazelet was diagnosed with leukemia in 2002, experienced a relapse in 2004, and found himself physically and mentally unable to write for more than a year. While his ultimate recovery from illness and return to writing are both admirable, he is emphatic in the interview that they are distinct, separable events, and further underscores his view that he hardly “did something special” by surviving cancer:

Havazelet is proud of “Bearing the Body” and proud of himself for having written it. He doesn’t like the idea of anyone confusing his work with his life and wants it judged on its own merits. He especially dislikes the idea that he did something special by surviving cancer and finishing a book.

“I don’t know how many times people told me I was a hero when I was just laying there,” he says. “What’s heroic about that?”

“I don’t want this to be some sort of redemptive story about how I beat cancer,” Havazelet says. “I didn’t beat it. I survived it. I was a zombie. I lay there and didn’t die.”

He is adamant on that point and mentions it repeatedly in two separate interviews. He hates the way society turns away from illness and ignores those who are sick unless there is a feel-good story about “winning the fight” against disease.

“When people talk about cancer they talk about Lance Armstrong and how he beat it, and that’s great and he’s great, but it doesn’t always turn out that way,” Havazelet says. “This expectation that you can beat it is self-destructive. It’s a taunt, and that heroic attitude is a burden.”

Though I would not echo all of Havazelet’s sentiments precisely, I do like to think that I understand where he is coming from. On a distinct but similar note, I submit that surviving – for now – lymphoma is actually not among the more remarkable things I have done, or that, at minimum, it is not among those personal accomplishments most worthy of praise. I am well aware that a patient’s attitude can make a profound difference in the course of treatment – in its perception, certainly, and possibly also in its efficacy – and I do like to think that I have maintained a relatively positive attitude throughout this experience. Nonetheless, from a purely agency-based perspective, I am extremely chary of becoming heroicized for anything that I have done here. Most simply, I really do not believe that I have done all that much. More tellingly, I would do just as much in the event of a relapse, quite possibly, then, with quite different results. If I am to be praised for anything I have done now in “beating” lymphoma, then, by the same standard, I would logically merit censure in the event of a relapse and unsuccessful treatment. As I assume that few gentle readers would rush to criticize a dying man, there must be, revealed in that second scenario, some recognition of my relative lack of agency that pervades the entire process.

Havazelet calls attention to this by plainly observing that he “‘lay there and didn’t die’”; I would characterize my involvement in my treatment in similar terms. And the lesson I would take from it is that my participation in my treatment was not a particularly agential one. I have played a much larger role in many, many other projects than I did in my treatment for lymphoma, and it is this realization that underscores my reluctance to be heroicized. Extol if you must my work ethic in physical therapy, which has clearly contributed to my rapid return to relative mobility; certainly, praise my medical professionals, who are all personable and all seem to have been medically effective; and by all means, laud Julie (and the rest of my support network, but especially Julie), who not only had to watch her fiancé undergo emergency surgery within twelve hours of the proposal, but also nursed me back to health upon my return home from the hospital. But if you need a reason to think well of me, please, find something other than the happy accident of my own survival to focus on, an outcome so much contingent upon the timely perception of a neurologist, the skill of a neurosurgeon, and the research work of reams of medical oncologists.

* * *

On a lighter note, my originally-intended end for this entry, with apologies to J.K. Rowling and the close of the final Harry Potter tome, was to have been, “The scar had not pained Gavin for six months. All was well.” Which is also true.

Bicycle!, redux

Wed, 05 Dec 2007 05:22:47 GMT

I bicycled 18 miles today, in slightly more than an hour and a quarter. They were 18 relatively flat miles (I remain noticeably weak on the hills, for physiological reasons that I look forward to clarifying with the physical therapist), but it was nonetheless quite gratifying to get back home, look at the odometer, and realize that I had averaged a little better than 14 mph while biking. I could have gone farther than that eighteen miles, too; I just got hungry.

Since I'm not dying anymore, my new goal for this site is to by and large cease appending medical updates, except occasionally and as necessary, and instead to simply brag from time to time about new distance frontiers reached by foot or bicycle. Stay tuned.

November 30 meeting with Dr. Dana: The full background information version

Wed, 05 Dec 2007 04:13:11 GMT

Dr. Dana's thoughts

I am, per the results of last week's PET scan, currently in complete remission from diffuse large B-cell lymphoma. This is clearly good news, and is, indeed, the best status that I could have at this time, six weeks after finishing chemotherapy.

There is "at least a 75 percent chance" that I am permanently cured. On the other hand, that also means there is an approximately 25 percent chance for a further relapse. A relapse would hardly, in itself, be a death sentence; relapsed DLBCL is treatable, too. However, treatment following a relapse is considerably more complex, and is likely to require a stem-cell transplant. [My own research -- i.e., NCCN treatment guidelines -- suggests that an alternate high-dose chemotherapy regimen, such as ICE, DHAP, or MIME (all with or without rituximab), is indicated as a first additional treatment, to be followed by a stem cell transplant, plus, potentially, radiation. Feasible, but not fun, to put it very mildly.] The most common window for a relapse is within the next two years, which motivates the relative frequency of repeat visits (once every three months) in that time.

All that said, there is nothing more to do at this time to increase the odds of remission: The current treatment is simply hopeful observation.

The one other complicating factor is that the original tumor, while diagnosed, classified, and treated as DLBCL (diffuse large B-cell lymphoma), is likely of follicular origin. I need to read up on my histology before I can fully explain what this means, but the simple answer is that diffuse lymphomas form in a slightly different manner, within a lymph node, than do follicular lymphomas. Per Leukemia and Lymphoma Society publications:

"Diffuse Lymphomas: These subtypes of lymphoma have a uniform pattern of disruption of normal lymph node architecture (structure), as seen in a lymph node biopsy. When the biopsy specimen is examined under the microscope, the lymphoma cells are spread diffusely throughout the lymph node.

"Follicular Lymphomas: This term is used to describe the subtype of lymphoma in which the lymphoma cells are grouped in clusters or follicles. This pattern is distinct from diffuse lymphomas. . . . [Follicular lymphoma] is named for the microscopic pattern observed in the lymph node biopsy, which shows accumulations (follicles) of abnormal smaller B-cell-type lymphoma cells. The follicles are scattered through the lymph node(s)."

The short answer/implication of the above distinction is that I am in remission for now, regardless of the disease's origin. The longer implication, however, is that the neoplasm in question began follicularly, though it then became, presented as, and was treated as diffuse. Diffuse lymphomas are more aggressive and quickly-moving than follicular lymphomas, though these same characteristics also make them more receptive to treatment. The goal in treatment of a diffuse lymphoma is to induce a complete remission. The goal in treatment of a follicular lymphoma is a series of remissions, each lasting for some time. This is another way of saying that follicular lymphoma is not fundamentally curable, though long-term survival rates are not bad. (Statistically, part of the problem with follicular lymphoma is that it is an indolent, or low-grade, lymphoma, which is slower moving and not as aggressive as a fast-moving lymphoma such as DLBCL or anaplastic large cell lymphoma. One implication of this is that such slow-growing malignancies produce few symptoms until they are in their advanced stages and have spread to multiple extranodal sites, which makes curative treatment difficult. Pancreatic cancer -- seldom discovered until it is too far advanced for effective treatment -- is a fair analogy here.)

The follicular origin notwithstanding, I believe that as diffuse lymphoma was how the original neoplasm presented, diffuse lymphoma is what the subsequent diagnosis would be for any relapse. (I did not ask Dr. Dana this directly.) What Dr. Dana did say was that the follicular origin of my diffuse lymphoma implies a greater likelihood of relapse, for a longer period of time, than if the original diagnosis had simply been diffuse lymphoma from a diffuse lymphoma origin. This is because follicular-origin lymphoma can be latent for a longer period of time than normal DLBCL diffuse lymphoma. He would therefore recommend monitoring me for as long as ten years' total time (five to ten), rather than the two to five years that would be standard for someone with diffuse-origin diffuse lymphoma.

I reiterate that I am in remission now, regardless of the original neoplasm's histological origins. But it should be kept in mind that my diffuse lymphoma had follicular origins, and that this has implications for my long-term prospects. In sum, its presentation as diffuse lymphoma moves it to the realm of aggressive lymphomas, which was central to its status as treatable (as opposed to only manageable, i.e., not curable). But its origin as a follicular lymphoma brings with it long-term considerations, namely that the window for watchful monitoring needs to be somewhat longer than it would be otherwise.

Questions and answers

1. What else -- other than a tumor -- stimulates FDG-18 uptake? For example, an earlier radiologist's report (for a July 5 PET/CT scan) found "slightly increased FDG uptake . . . along the posterior aspect of the lower thoracic and upper lumbar spine corresponding to the surgical changes" and inflammation resulting from the then-recent laminectomy, and noted that "residual tumor at these levels cannot be excluded." Now, five-plus months after both that scan and the laminectomy, is it easier to rule out residual tumor in the original paraspinal area?

A PET scan, by definition, measures the metabolization of glucose. There are numerous things that metabolize glucose in this manner, including such normal bodily functions as digestion (for which reason measurable glucose avidity can typically be observed in the intestines). In this case, we are basically reliant upon the expertise of the radiologists -- who do interpret a number of these things; it's their job -- to interpret the scan results as showing no tumor-related activity. Dr. Dana was certainly comfortable with their expertise

Be that as it may, given the implications of this particular scan, I asked about getting a second opinion on an interpretation of the scan. Dr. Dana asked a second radiologist, a colleague of his, to review the scan at my request. This second radiologist called me yesterday afternoon (Monday, Dec. 4) with his take: he confirmed the first radiologist's initial findings, that the reading is accurate and that everything there is benign. Thanks to Uncle Larry for earlier pep talks as to the epistemological value of a second opinion in any area of medicine.

2. In a similar vein, NCCN guidelines note that lymphoma may leave behind scar tissue, "which can be seen with a PET or gallium scan or repeat biopsy." Is this an issue here in interpreting the current PET scan? How do you tell if an enlarged lymph node still contains lymphoma, or merely scar tissue?

To the second point, well, by definition, you use a PET scan -- this is one advantage of the PET scan over the CT scan. To the first point, I guess this leaves me reliant upon the expertise of the radiologists once more. At least I checked with two of them.

3. What is the smallest thing that a PET scan can detect? That is, how accurate is this scan/is a PET scan alone considered sufficient for restaging lymphoma following an initial course of chemotherapy?

A PET scan can detect tumors or other abnormalities down to one centimeter in length -- this actually strikes me as rather large, and minorly disconcerting, only because the neoplasm that was extracted from my vertebral column was not too much bigger, at 4 x 2 x 1 cm in length. (A one-centimeter tumor? Heck, I've run a marathon with a one-centimeter tumor in my back!) However, to answer the second question, a PET scan is the accepted, state of the art standard for restaging lymphoma and judging the efficacy of first-line chemotherapy, so this is what I've got. I would also assume, to put it mildly, that I would be quicker to act on the sort of back pain that I first experienced earlier this spring -- or any other unusual physical abnormality -- should such symptoms present once more.

4. Is radiation recommended as a standard protocol at this stage? Do you recommend radiation at this time?

Dr. Dana does not recommend radiation at this time, as my chemotherapy regimen was particularly extensive. (For comparison, NCCN guidelines suggest that as few as three to four chemotherapy sessions may suffice for a tumor of this (relatively small) size, followed by radiation therapy as needed.) Indeed, he said, I underwent sufficient chemotherapy to knock out a tumor much larger than the one I had. (In part because I responded to the treatment so well, and my quality of life really was so little affected, thereby allowing him to order more treatments.) Radiation, he explained, is more typically indicated following only four (or even as few as two) chemotherapy treatments, and/or chemotherapy treatments to a smaller, more localized area, such as one's neck. (I am also curious whether there exist concerns associated with directing radiation at the central thoracic area -- i.e., potential long-term damage to the heart, lungs, and other important internal organs -- but for the time being, it looks like I don't need to get into this.)

5. What is my current presumptive level of immunosuppression, or lack thereof? Practically speaking, I'm really taking few extraordinary precautions at present, save washing my hands in the way that most people should anyway. I'm primarily curious if I can go back to garbage and litterbox-cleaning duty without concern.

From an exacting and precise medical standpoint, and if further laboratory tests were brought into play, my immune function probably still is somewhat different from that of someone who did not spend the last four months having poison pumped into their body. Practically speaking, however, my immune function is essentially normal, and is unquestionably sufficient to let me take out the garbage and clean out the cat's litterbox once more. (Thanks, Julie, for singlehandedly doing these the past five months. At least I've been able to do the recycling.) My white blood cell count is currently normal, and my lymphocyte function standard. Plus I got a flu shot earlier this year (you probably had to make an appointment or special trip to go get yours; I could just get mine right alongside my granulocyte colony-stimulating factor hormone shot at the clinic -- pretty handy, eh?), thereby covering all my bases.

6. Am I correct that DLBCL results from acquired -- rather than inherited -- damage to lymphocyte DNA, and so there is no increased risk of hematological malignancies in any child I might have?

This is correct, on both fronts. There is no increased risk of hematological problems in any potential issue as a result of my having had this disease. (Plus, we could save the kid's umbilical cord blood, harvest the stem cells therefrom, and give them to me if I needed a stem cell transplant at some point down the line. Everybody wins.)

7. If I haven't experienced bone and joint pain, peripheral neuropathy, or undue fatigue since the final chemotherapy treatment, does that mean that I am relatively unlikely to experience these problems in the future?

No, these things (which really haven't been a problem, at all or at any point) will not be a problem in the future.

7a. Is the fatigue that I have experienced to date (i.e., I need to sleep 8-9 hours a night these days instead of 6-7) likely to diminish with time?

Only maybe. My level of fatigue may decrease a bit more over the next few months, but maybe not too much. Big picture, I'm hopeful to need not quite so much sleep by next fall, so I can go back to abusing my body as a student once more.

8. The list of potential late effects for even successful treatment of lymphoma is fairly daunting; NCCN literature notes, "One of the most serious late complications of successful chemotherapy is the possibility of developing [myelogenous] leukemia. This affects a small percentage of lymphoma patients." Leukemia and Lymphoma Society guides, meanwhile, advise that "Radiation therapy has been associated with cancers of the breast, lung, stomach, bone and soft tissues. Often, they occur many years after treatment." Other potential concerns, finally, apparently include heart muscle injury and heart failure (secondary to anthracycline drugs and radiation to the chest area) and lung tissue injury. Assume for the moment that I am in remission in five years' time... what long-term diagnostic steps are typically taken in light of all these increased risks?

Yes, there are a number of increased risks that follow even the successful treatment of lymphoma. (Keep in mind also that I have got NHL once already, so I perhaps have an increased risk of getting cancer, anyway. Actually, I'm not sure whether that's good statistics or just a tautology.) Virtually all studies in this area on long-term health outcomes and late effects concern survivors of Hodgkin's lymphoma, rather than people affected with NHL. This is because Hodgkin's lymphoma has a much younger age of average onset (ca. 15 or 20 versus ca. 65), along with a much higher rate of long-term remission. I.e., for two big reasons, there are a great deal more survivors of Hodgkin's lymphoma out there (than survivors of NHL) to track and on whom to do long-term studies. I may look into this myself somewhat, but, as Dr. Dana mentioned nothing relevant regarding NHL patients, it sounds as if there is not much out there at all regarding long-term outcomes following the successful treatment of non-Hodgkin's lymphoma in young adults.

Anyway, among survivors of Hodgkin's lymphoma, there is something like a one percent chance of getting leukemia. This is most likely among patients age forty or over, and the risks of this are highest within the first seven years of treatment for the initial lymphoma. On the one hand, 1% is not a particularly large risk. On the other hand, the mid-20s man in the street must have a .01% chance of getting leukemia within the next seven years, if not a .001% or .0001% chance, so this is clearly a highly elevated risk. It is encouraging, however, that the absolute chance is only one percent (albeit for survivors of Hodgkin's lymphoma. The question of whether Hodgkin's lymphoma differs from non-Hodgkin's, in terms of its mechanism or histology, in a manner that makes a subsequent diagnosis of leukemia more likely, is an interesting one, and something I will look into.)

As a practical matter, this is clearly a statistically significant risk. This is a reason to monitor me for potential myelogenous leukemia, which can -- and will -- be done via simple blood count tests.

Regarding heart issues, there is a clear and established connection between anthracyclines (of which Adriamycin, the "H" in R-CHOP, is an example) (hey, it stands for "doxorubicin hydrochloride," not "Adriamycin") and cardiotoxicity. The risk of cardiotoxicity is calculated relative to a patient's lifetime cumulative dose of the anthracycline. In the case of Adriamycin, the minimal threshold level for cardiotoxicity is, cumulatively, 450-500 mg/m2. As is standard in R-CHOP chemotherapy, I received doses of 50 mg/m2 each, six in all, for a total dose of 300 mg/m2 of Adriamycin. In Dr. Dana's opinion, there is "virtually no chance" of cardiac complications from such a dosage of Adriamycin. He later characterized this as a "vanishingly small" chance for complications.

Finally, to answer my originally-posed question about long-term diagnostic steps, I will be back in for CBCs and physical exams (the latter to test for the risk of heart failure, along with other symptoms) with relative frequency over the next several years -- every three months for the next two years, then every six months thereafter. Of course, I should be quick to alert an oncologist, and to return for further and immediate examination, should I experience swollen lymph nodes anywhere, recurring back pain in the original paraspinal area, or unexplained weight loss, fever, or night sweats -- the latter three being classic "B symptoms" of NHL (none of which I experienced before, one of several indications that the initial staging of my disease was not too dire).

For the time being, in complete remission

Mon, 03 Dec 2007 01:40:54 GMT

[As originally emailed on November 30]

Dear all:

I am extremely pleased to be able to report that I am currently in complete remission from diffuse large B-cell lymphoma. There are some further explanations that could be appended to that statement, and, long-term, it is not just a truism that there is no true cure for cancer. Nonetheless: By far the best and most positive diagnosis that could come at this stage, six weeks after concluding chemotherapy, is complete remission, and that is my status at present.

Fuller details on what this means, plus a more complete medical explanation, available online (http://gavius.livejournal.com/) at some point within the weekend.

There's more good news, however. I had long been scheduled for a spinal fusion next Monday, December 3; a spinal fusion almost universally follows a laminectomy (as I had in June, which took out large parts of four vertebrae in my thoracic spine), to put one's back back together after taking it apart in the laminectomy. I don't need this, however, it turns out, as, essentially, my back healed itself in the five months since the original surgery. More on this is available online at this time.

In sum, I am currently cancer-free, and am not going to begin December with a week in the hospital for major back surgery, followed by weeks' worth of recovery and rehabilitation. Plus this week saw my first two outdoor bike rides since April, with many more to come. Happy holidays, indeed.

Thank you to all of you who have sent me encouraging messages over the past several months, and to those of you who have kept me in your thoughts and prayers at this time. My uncle, himself a medical professional, tells me that emergent research suggests that intercessional prayer is associated with positive health outcomes... whatever the reason, I have, thus far, an extremely positive outcome, and am quite pleased to be able to say so. Thanks.

All best, as always,
Gavin.

Bicycle! Outside!!

Mon, 03 Dec 2007 01:39:23 GMT

So on Wednesday of this week, I went for my first bicycle ride outside in nearly seven months. It was around 35° at the start, as I rode off into a pervasive bank of damp, chilling fog. An hour or so later, it had warmed up to 40°, but was raining very, very hard. The droplets made me wince as they hit my cheeks, and water sluiced over my nonexistent eyebrows [which fell out from the chemotherapy] into my eyes. It was fantastic. I promptly went out again the next day, and have been for a ride outside on three of the four days since.

Here is a sample of the weather warnings in effect at the time of my ride earlier today:

... Major storm with possible flooding heading for the Pacific northwest...

... Flood Watch in effect through Wednesday morning...

* a powerful storm system will bring heavy rains to the entire
forecast area... with one strong low now beginning to affect the
coast and another powerful frontal system following behind.
Heavy rain has already begun on the coast this morning... and
will advance across the forecast area today. After a brief pause
in the heavy rain this evening between systems... a stronger
system will bring very high rain rates to the area tonight and
early Monday. This storm has origins in the subtropics of the
mid Pacific... and carries very high precipitable water values.

Rainfall totals of 4 to 8 inches are expected in the Coast Range
and along the coast... with 5 to 7 inches expected in the
Cascades and the Cascade foothills. The Willamette Valley and
South Washington interior will see between 1 to 3 inches of
rain.

...A Wind Advisory remains in effect until 10 PM PST Monday.

Periods of south winds of 20 to 30 mph with gusts to around 50 mph
are expected through Monday into Monday evening across the inland
valley areas of southwest Washington and northwest Oregon. There
has already been reports of power outages and tree damage reported
in the Lebanon and Salem areas.

And here is the apocalyptic, world-is-ending weather map from same:

The point of all of which is that the weather really wasn't that bad at all on the ground, that it was great to get out, and that I was appalled to see so few other people out there.

Surprise - no more spine surgery!

Wed, 28 Nov 2007 02:25:36 GMT

[subject line for original email on this subject: "no more spine surgery, because my back healed itself, and I am a rock star," which is sort of your executive summary of this posting]

Surprising -- very pleasantly surprising -- news about next Monday's surgery: It is no longer happening, as, in the opinion of my neurosurgeon, it is not medically necessary.

As some of you may know, I got a slightly cryptic message from the neurosurgeon, Dr. Antezana, two weekends ago, noting that he had reviewed my recent X-rays and CT scans, and that they suggested to him that "surgery may not be necessary." I therefore went to today's pre-op appointment prepared with questions about the necessity of the surgery, long-term considerations of spine safety and durability, long-term implications for surgery and rehabilitation following a traumatic event if surgery is or isn't done, and the like. We didn't get to particularly many of these questions, though (though the surgeon later kindly reviewed all my questions anyway, even the 90 percent that were now moot), as Dr. Antezana began the appointment by informing me that he had canceled the surgery.

Specifically: "The reason that I've canceled your fusion surgery is that the only indication for this surgery is spinal instability." I don't exhibit that, so there is no pressing need for surgery at this time. Surprise, and happy holidays. Enjoy your month of December, which until that point I had completely set aside for surgery and recovery therefrom.

From a medical perspective, I actually don't have too much more detail than that. Dr. Antezana did explain -- if I remember and am presenting this correctly -- that the sort of laminectomy he originally performed almost always results in decompression, which then leads to instability. ("Almost always" enough to merit discussion of performing the fusion alongside the original laminectomy last June, which they ended up not doing, or certainly to render it sensible to anticipate the fusion as a second surgical component of treatment.) Absent such decompression, however, my spine exhibits much less instability, to the point that a second surgery is no longer necessary.

In more direct terms, Dr. Antezana said, and I quote, "you're a rock star." He later noted, "Go home. Spend the holidays with your fiancée." And, finally, discussing my long-term options, he said, "You may need a neurosurgeon someday. [Should I decide that I want this or a similar surgery down the line; it would be equally feasible to perform this surgery at some point in the future should I wish to.] But you certainly don't need me now." He also noted that I was "still thin as a rail," but that much I knew already. Same for the first point too, actually; I have a business card that says as much.

So... what happens next? Logistically, I just got my life back for a month or more, including the holidays, which is clearly pleasing. And I am cleared to resume bicycling and running (with some caution on the latter front, and letting back pain, if any, be my guide); our first stop after returning home from the hospital was the bike store, where I got my brakes touched up and my bicycle readied for a return to outside riding. (Yes, it is Nov. 27; outside riding at this time of year tends to be wet, dark, and cold, which indoor riding is not. But I have also not ridden my bike outside since April 30, 2007, which was 6 months and 27 days ago, and, yes, I have been counting. So first thing tomorrow I'm going for a ride outside, weather notwithstanding.)

What happens medically? Short-term, I am going to continue my work with the physical therapist; my back may be not unstable (which is specifically not the same as "stable," but which is also better than "unstable"), but my legs are also weaker than I would like them to be, pursuant to some combination of chemotherapy, the initial major back surgery, and nerve damage from the impingement of the original tumor. I went by the physical therapist's this afternoon, too; he was surprised to hear my news, though not entirely, given my prior rapid progress and my general lack of a stooped posture as of a month or so post-surgery. He is going to get a prescription/formal referral from Antezana for logistical and insurance purposes, then we can continue our rehab work together. Running and biking I can do on my own; a sensible next step would be work with weights in the Reed gym, which is around a five-minute walk from the house. Mike (the PT) says we can make me "extremely strong," by which he means that my still-weakened left side could eventually become as strong as my right again. Very exciting.

And what does it mean medically to go off into the world missing parts of four vertebrae? That I should be somewhat careful, of course, though more in the sense of calculated risks than of living in fear. This means no downhill skiing this winter, apparently, and perhaps a degree of caution next winter when I do get out on the slopes again. (But I can cross-country ski this winter, on the off chance that it snows in town again.) Depending upon how I feel, it may ultimately mean playing some sports at a more standard level of enthusiasm, and not a throwing-myself-to-the-ground-every-play level of reckless enthusiasm. But it also means keeping in mind that the most dangerous thing I or most anyone does each day is drive/ride in a car down the street... and by virtue of working from home I don't even do that most days, so I guess I'm doing pretty well.

So there you have it. I'm back home, with said fiancée, and a fat cat sleeping contentedly at my side. [Okay, she has since got up and is begging Julie for lettuce.] I don't need to be at the hospital at 5:30 a.m. next Monday morning. I'm going to go for a bicycle ride OUTSIDE tomorrow, and am going to start thinking about dusting off my running shoes soon after that. There remains the small matter of my lymphoma, the efficacy of first-round chemotherapy treatment for which will be discussed with my appointment with the oncologist on Friday... but for the time being, life is clearly very good.

Sesame Street

Sat, 17 Nov 2007 07:54:03 GMT

Still no new medical news -- really, I feel fantastic. Instead, an extremely disturbing discovery, from this New York Times review of a proto-Sesame Street DVD: As of 1985, ALL characters on Sesame Street, not just Big Bird, have been able to see Snuffleupagus. Did you know this, dear reader? I had no idea. None at all. Next thing I know, someone will be telling me that Cookie Monster (apparently "originally designed by Jim Henson for use in commercials for General Foods International and Frito-Lay," the article notes) converted to a more balanced diet earlier this decade. Egads.

Back to Serious Medical Updates next week, or so; for the time being, this news so shook my Weltanschauung to its prelapsarian core, I had to share.

Upcoming medical appointments

Thu, 08 Nov 2007 05:07:39 GMT

In response to some recent questions on the topic, here are my upcoming medical appointments at a glance:

    Nov. 12, CT scan and x-rays, preparatory to early-December spinal fusion
    Nov. 27, PET/CT scan, to determine efficacy of treatment to date
    Nov. 27, pre-op appointment for spinal fusion
    Nov. 30, appointment with Dr. Dana to discuss Nov. 27 scan results, i.e., when I will know how effective the last four months' worth of chemotherapy were, and if/what further action is needed with regard to the lymphatic tumor previously found in the paraspinal region
    Dec. 3, instrumented fusion over T5 - L1 vertebrae

In sum, the entire month of November will pass with no one poking, prodding, or injecting me, and I will be consistently around and so can make my job a little less of a sinecure. Very exciting.

Wedding website

Thu, 08 Nov 2007 04:58:44 GMT

Looking for "Gavin & Julie's Wedding"? Wrong site. Click here instead.

Alaska pictures (a judicious selection from a recent trip)

Tue, 23 Oct 2007 20:01:04 GMT

Moose in backyard

Julie in backyard

Street scene in Bethel, Alaska
(on the far west coast of the state, ca. 400 miles due west of Anchorage)

Turnagain Arm, just south of Anchorage

Fall colors on Old Johnson Trail

Requisite Denali shot

Bear tracks in lake ice, near cabin

Susan and Julie near cabin; Alaska Range in background

No more chemotherapy!

Tue, 23 Oct 2007 19:42:39 GMT

I am pleased to report that yesterday, October 22nd, marked my sixth and final session of R-CHOP chemotherapy, thereby concluding first-line treatment for large diffuse B-cell lymphoma. The final session was much like the five before it (really not too bad), except that I suspect I was in an even better mood about it yesterday than in the past, simply because I knew it was the last one. And when this was one was over, I got up, collected my stuff, found all my nurses, hugged them, thanked them, told them that they had been great, that I hoped to never see them again, and then went home. Now, much less than 24 hours following treatment, I am up and about, and feeling close to 100 percent (and in fact, I was up enough to sit down for dinner last night, too. Very exciting.)

So, what happens next? The answer is two-fold, and is complicated slightly only because the conclusion of the chemotherapy for the lymphoma means that we can also return to orthopedic considerations, stemming from my valiantly-rehabbed but still unstable spine.

On the one hand, orthopedically, I am scheduled for my second (and final) major back surgery of the year, on Monday, December 3. This will be a fusion of most of the vertebrae in my thoracic spine, or, technically, an instrumented spinal fusion of the T5-L1 vertebrae (Gray's Anatomy diagram of vertebral column here). On the merits, this actually qualifies as fairly major surgery -- any time part of your hip bone ends up inserted between several of your vertebrae, I think the "major surgery" barrier has been crossed -- and recovery from this is typically measured on the order of several weeks, if not months. However, without being too over-confident, I am certainly buoyed by my rapid recovery from the initial laminectomy, four months ago today in late June. I have also been diligently strengthening my core muscles near-daily for several months now. So, yes, anything that involves my back being opened up over nine vertebrae's worth is clearly a major undertaking, but I remain hopeful that the surgery, and recovery therefrom, will not be too onerous.

The doctor for this second surgery will be Dr. Antezana, the same neurosurgeon who performed the laminectomy in June. I like him, and not just because he saved my life under pressure while working in close proximity to my spinal cord for several hours. In fact, he's invited to the wedding -- I figure that, as much as anyone, he'll be responsible for my ability to literally walk down the aisle next June.

On the other hand, with regard to the lymphoma, some time has to pass from the final chemotherapy treatment before the chemotherapy's efficacy can fully be determined. (I.e., because three weeks need to pass before my body can recover from the more noxious effects of the chemotherapy drugs, and, more desirably, before those drugs can take full effect.) I will therefore undergo diagnostic imaging (a CT and PET scan) in late November, keyed (I assume) to the paraspinal area where the tumor was initially found. This scan will be on the afternoon of Tuesday, November 27. Three days later, on Friday, November 30, I will meet with Dr. Dana to discuss these results, and to consider what should be done next.

Some things I could be told on November 30, roughly in order of best to not-as-good news:

- The lymphoma has completely disappeared. This would mean that the neoplasm responded completely to treatment, and that there remains no evidence of the malignant tumor in the paraspinal area (the caveat is that scar tissue can be left behind in the area, which should be distinguishable from cancerous cells by the rate of F-18 FDG avidity on the PET scan). I would be in (at least temporary) remission at this point, and would be free to go, with doctor visits every three months for the next two years, then twice a year for three years after that (to perform additional scans to see if the lymphoma has returned).

- The lymphoma has shrunk by more than half, but has not disappeared. This would mean that the lymphoma responded partially, but not completely, to treatment. The next step in this case would be to proceed with high doses of radiation therapy, or to consider a clinical trial or stem cell transplant (presumably allogeneic, as (a) my bone marrow cells have taken a beating the last few months, and (b) Dylan's got to have some very healthy, likely well-matched stem cells he could spare).

- The lymphoma has not shrunk, or is growing -- the lymphoma was unresponsive to first-line R-CHOP chemotherapy. This would move me directly to a different chemotherapy regimen, incorporating drugs not used before. This would not be that good a result of first-line treatment. It also, per both physician reports and my own (admittedly perhaps quite useless) perception of my health, ability to move, and lack of pain in my lower back (in the area that was quite painful when the tumor was growing in there), seems fairly unlikely.

(Full disclosure: Basically all of that, or certainly the specifics, comes from current NCCN NHL Treatment Guidelines, if you'd like to follow along at home.)

And there you have it. I hope this finds you all well. I am off first thing tomorrow morning to the East Coast, where my grandmother recently died of AML, acute myeloid leukemia. A week ago today, I was walking with Susan and Julie across the bogs and frozen tundra north of our cabin, marveling at the stunning Alaska Range in a clear blue sky. It's been quite a week.

Second back surgery scheduled for early December

Wed, 03 Oct 2007 20:15:36 GMT

Okay, big picture, I should probably also note that Dr. Antezana and I have scheduled my follow-up back surgery (technically, an instrumented fusion over the T5-L1 vertebrae) for Monday, December 3. I will therefore be merrily walking around, compromised spine and all, over the Thanksgiving weekend, then out of the hospital by early- to mid-December, well before the holidays.

I suspect that I am looking forward to the year's second major back surgery more than the average surgical candidate might. I have been systematically rehabbing a back that is missing parts of four vertebrae for several months now, and have, by all accounts, been doing a fairly effective job of this. However, my spine as it currently stands, though up to everything I have demanded of it, is in a fundamentally unstable state, which limits the absolute amount of strength and mobility I can ultimately regain. I am therefore very much looking forward to getting my whole back back. Plus a few titanium rods, bone grafts, and synthetic bone protein thrown in for good measure.

Five down, one to go, plus a good deal more unrelated thoughts

Wed, 03 Oct 2007 20:04:55 GMT

I am running out of ways to creatively state that the chemotherapy is no longer adversely affecting me all that much (at least, compared to the three-fold vomiting of the first go-round, simply coming back home and going to sleep for nearly 18 hours straight, the case in treatments two through five, sure feels to me like a lack of adverse effects), so I'll just cut to the chase: I'm feeling pretty darn good, and am starting to anticipate moving on from having poisonous chemicals pumped into my veins once every three weeks, as will be the case by the end of this month.

Put another way, following Monday's fifth (of six) chemotherapy session, and Tuesday's two-part follow-up injection sequence, here are some things that do not seem to be affecting me at this time:

• Monday's chemotherapy session.
• Tuesday's injection of Neulasta (a G-CSF, or granulocyte colony-stimulating factor, a hormone that stimulates the bone marrow to produce more granulocytes, stem cells, and, ultimately, neutrophils, an important, infection-fighting kind of white blood cell. I am pleased to report that I currently possess the neutrophil levels of an average, healthy individual (I am currently at "7," where a healthy range is 1.8 - 7.7, and I was previously as low as 0.6, if you'll permit me to dispense with all units of measurement here).)
• Tuesday's injection of a flu shot (since, the previous paragraph's healthy neutrophil levels notwithstanding, I remain, technically, immunosuppressed in some other ways) (not sure which ones, as I haven't got sick since starting treatment, and don't intend to anytime soon).

Here are some things that do still seem to be affecting me:

• Prednisone, an oral corticosteroid that I take twice a day for five days following each intravenous chemotherapy session, which gives me remarkably energy and thoroughly skews my sleep schedule.
• The 2007 MLB playoffs.

So that's about it medically.

Finally, on a lighter note, I am still somewhat staggered that Monday's chemotherapy session, like each of the four before it, carried a (pre-insurance) sticker price of nearly $11,000, in exchange for only four to five hours in the clinic. While I like to think I am worth every penny of it, it still seems a shame that it costs quite so much for the privilege of sitting in an air-conditioned room feeling progressively nauseous (okay, okay, and becoming cured of cancer, too). I accordingly present some suggestions of other, more enjoyable things one could to spend $10,000 or so within a long afternoon or evening:

• Have an epic day of heli-skiing out of Valdez, Alaska... with nine friends

• Fly to Reykjavík, Iceland, from Portland later this month, and get a head start on the cross-country ski season... again, with nine friends

• Buy your own snow-maker, and start the ski season right in your backyard

• Pay for approximately one-third of a typical American wedding, the average overall cost of which is now approaching $30,000

• Pay for all of my and Julie's upcoming nuptials (website link for this forthcoming soon), likely with enough left over to send us to Italy and back for our honeymoon (we met there, you see, five years ago, and neither of us has yet been back...)

• Buy two field-level seats along the first-base line for Game 7 of the 2007 World Series at Yankee Stadium... or a bargain twenty-plus bleacher seats for the same game (the latter are in the no-alcohol section, which perhaps explains their low cost)

• Purchase a dozen or so seats along the 50-yard line at this year's Michigan-Ohio State game in Ann Arbor (from which we may begin to see how I anticipate contributing to rent money over the next three years, inasmuch as student football tickets have a sticker price of around $27 apiece. Oh, and married students get to purchase two season tickets, not just one, so long as one of the two is enrolled as a full-time student. Who said marriage wasn't without its economic advantages?)

And so on. At least the chemotherapy seems to be working, which is more than can be said for Michigan's defensive line these days.

On the road / more pictures

Thu, 13 Sep 2007 20:25:46 GMT

Julie and I went to Newport, on the Oregon coast, for a few days last week. Here are some pictures of that trip:

Me, ecstatic to have found cool weather, on a hike on a coastal headland.

Julie, with a large, downed tree.

Looking south down the coast from Cascade Head.

Sea lions in Newport harbor.

For more than just a few pictures of the outing, go to my Shutterfly photo gallery, then simply click on the top-most album, the one titled "Newport."

No news still good news, or, four down, two to go

Wed, 12 Sep 2007 06:27:58 GMT

Okay, the subject line pretty much says it all: I had the fourth chemotherapy session, out of six, yesterday morning and early afternoon (yes, that's four out of six, and not the fourth and final; more on that later). I felt reasonably crummy during treatment, which is to be expected with the type and potency of chemicals being introduced into my body these days, but then I came home and went straight to bed, while Julie attended to me and was generally very kind and caregiving (even more so than her usual, solicitous norm, which is very kind indeed). As with treatments two and three, but not one, I promptly fell asleep before I could throw up, which is clearly preferable to actually having to vomit -- three times, no less, in the case of treatment the first. So no complaints there.

The next day I slept 'til 10, and woke up feeling really pretty normal. With 100mg of Prednisone (oral corticosteroids) in me within the course of the day -- I try to take the two 50mg pills at breakfast and lunch, rather than at lunch and dinner, so as to have a fighting chance of going to sleep at a normal hour, as these steroids really are pretty good stuff -- hey, I just hit 10 home runs last week, but get away from my locker, jerk -- I'm really feeling just fine. I was out for a walk after dinner with Julie and Susan, who is in town for a few days (ostensibly to mother me, though I thankfully don't need much mothering, so we're just going to blow off work and hang out for a few days), and made us walk an extra half mile loop around the Reed track, up to four miles for the walk total, just to use up a little more energy. So, by this point, my condition is such that a surfeit of energy is frankly among my greatest concerns.

Macroscopically and medically, my white blood cell counts (neutrophils) continue to increase, thanks to the surprisingly painless shots of Neulasta. (The neutrophil counts are now from the low edge of the normal range, as they were three weeks ago, to very nearly the middle of normal range.) I celebrated by having both alfalfa sprouts and bean sprouts with dinner tonight, both raw vegetables having been contraindicated ever since the outset of treatment (in which time, it should be noted, while knocking on wood, I have yet to get a serious infection or secondary illness of any sort, no matter how low my neutrophil counts may have been).

So, the long-term plan remains to continue with a full course of six chemotherapy treatments, then to perform a PET scan (positron emission tomography) following the sixth and final chemotherapy session. This scan, which measures the avidity, or rate of uptake, of a form of glucose analog (fluorodeoxyglucose, for those of you keeping score at home) by high-glucose-using cells such as kidney and cancer cells is the best and most definitive means possible for measuring the effect that the chemotherapy has had on the tumor. Basically, when one -- preferably a nuclear medicine physician or radiologist -- looks at the PET scan, they can see FDG uptake in predictable areas of my body, such as my kidney and brain. They also, perhaps, would see continued FDG uptake in the paraspinal area corresponding to the location of the original tumor. Or perhaps not. Or perhaps FDG uptake corresponding to either (a) residual tumor or (b) residual postoperative swelling from the original, late-June laminectomy, which I understand to also be a possibility.

There are, as Dr. Dana explained things to me yesterday, at least three distinct things that this PET scan could show:

1. Complete remission of the tumor.
2. Reduction of the tumor.
2a. As I noted above, swelling or FDG uptake that has nothing to do with cancerous cells specifically, but which are in the area, and relate to June's major back surgery.
3. Something worse, such as a progressive disease.

Of these possibilities, Dr. Dana suggested that (1) was, in his opinion, the most likely. Of (3), a progressive disease, he shook his head disbelievingly and said (something to the effect of), "But that just can't be." These are obviously very encouraging reactions... as a grain of salt or dose of realism, however, I have to note that Dr. Dana has neither yet scheduled nor seen the results of the PET scan, and so may simply be succumbing to his psychological desire to see his personable young patient fare well (hey, I'm not condemning anyone specifically here, but it's well-documented that this happens, generally, particularly with human(e) doctors and likable patients). On the other hand, he has, presumably, treated a large number of patients with LDBCL (large diffuse B-cell lymphoma), and has some confidence correlating things like my improving blood counts, consistently increasing strength, great response to treatment, and complete, consistent lack of systemic symptoms (things such as fevers, night sweats, and large unexplained weight loss, none of which I have ever experienced at any stage, are signs of a more advanced case of lymphoma) with the efficacy of treatment. So I am obviously hopeful that the PET scan will show result (2), or, better yet, (1), but I do have to note that the scan has not taken place yet, and that no one has looked inside me since late June's laminectomy.

Speaking of which, the final chemotherapy session will be on Monday, October 22nd. The PET scan will be approximately one month after that (but only approximately, as November 22nd is Thanksgiving day), once my body has had time to recover and get back to close to normal from the previous four-plus months' worth of chemotherapy. Assuming that the results of the PET scan are normal to encouraging -- let's say either condition (1) or (2) above, which apparently seems probable though neither is hardly guaranteed -- than Dr. Dana, the oncologist, is comfortable with having Dr. Antezana, the neurosurgeon, head back in and perform a spinal fusion very soon after. So if all goes according to plan, I will be scanned by Thanksgiving, operated on again in early December, and back home to recover well before Christmas. All of which gives me 2008 to learn how to walk again... which will have to happen following an even more invasive surgery this time (a nine-vertebrae spinal fusion being much more involved than a four-vertebrae laminectomy), except that I will know what I am getting into this time, and that my spine will be inherently stronger and more stable as a result of this surgery (I am currently valiantly rehabbing a fundamentally weakened spinal column, as one's vertebrae are rather structurally important, and you can't take out parts of four of them without your body noticing). I also cannot conceive of lacking for motivation, at any way or in any level, for getting back on my feet, running shoes, and bicycle once more. So if it's slow going in spring 2008 to achieve such, well, then, so be it. (If this were a Disney movie, I would likely make my triumphant return to long-distance running at the 2008 Eugene Marathon, where on April 29, 2007, I took my last running strides in finishing an easy 3:44 marathon... that seems a tad ambitious, even for me, but I have every reason to believe that I will be back up to running shorter distances by then.)

pictures

Thu, 30 Aug 2007 19:15:35 GMT

Medically, I actually have absolutely nothing new to report. The last chemotherapy session was ages ago, and I have felt 100 percent for days, ever since reaching the fifth and final day of the oral Prednisone course that follows each chemotherapy treatment. I'm not even, knock on wood, feeling any of the pervasive, often-experienced joint pain that accompanies the use of Neulasta, discussed above. Indeed, I would say my main day-to-day concerns are finding enough time to walk, bicycle, and/or do strengthening exercises each day. (Oh, and I'm up to four miles walking at a time, and an hour or more on the bicycle at a difficult uphill setting, so this is far beyond baby-steps physical rehabilitation, too.)

Instead, I wanted to post a few pictures of Julie and me on our recent trip to Mackinac Island:

Julie and Gavin being simperingly pleased, Mackinac Island, August 2007:

(Clicking on any picture should bring up a larger version of same, as desired.)

No news is good news, or, three down, three to go

Wed, 22 Aug 2007 00:33:01 GMT

I am long since returned from Michigan, which was a great trip all the way around. The wedding itself, held on Mackinac Island two Sundays ago, was lovely. It was great to see ample extended family in that milieu. And in the days leading up to that, Susan, Julie, and I traveled through southern Michigan, where I was able to introduce Susan to (and we were all treated very well by) her future in-laws in Kalamazoo and Cadillac, Michigan. And none of the traveling posed any real degree of difficulty for me, health-wise (nor did I get sick from anyone on any airplane, as my neutrophils are proving to be few but might), plus I got to get in more walking than I otherwise would in what can readily become a fairly sedentary lifestyle here in Portland. So, between family, socializing, and exercising in new locations, it was a great trip all the way around.

Anyway, we returned from Michigan early last week, then Dylan and I had Susan here to stay with us for a few more days. On one day last week we went to the beach (Ecola State Park, on the Pacific Coast; two days earlier we had been swimming in Lake Michigan outside of Petoskey), an outing notable for (a) the grievous sunburn I managed to get because I feel so great I forgot my chemotherapy drugs make me photosensitive, and (b) the single day of complete vacation that Susan took to sit on the beach and do nothing. Good to see this happened at least one day this summer.

After all this, it was time for the third chemotherapy session, which happened yesterday. This actually went just fine. Following treatment yesterday I came home, and slept for an impressive nineteen hours (2:30 p.m. - 9:30 a.m.). Today I'd say I'm still feeling a little slow physically -- I probably won't get back on the exercise bike until tomorrow -- but am otherwise firing on all cylinders. I am also looking forward to starting work for Susan's law firm later this week.

(Shout-out: Current disputes with my heel-dragging insurance company, not to mention full insurance coverage, upcoming, for half-time telecommuting work, sponsored by the attorneys and staff of Feldman Orlansky & Sanders in Anchorage, Alaska, only one of whom is related to me. Thanks for that.)

So, I would say the chemotherapy is by this point a non-issue. To help document such, here is a recreation of my conversation with Dr. Dana, the oncologist, prior to the start of yesterday's third chemotherapy session:

Dr. Dana (in his best, low-key, oncological manner): "So how are you doing?"
Me (very enthusiastically): "I feel great!"
"Did you have any problems following the last [second] treatment session?"
"Nope! I went home and slept for nineteen hours, but no nausea this time."
"What about the Neulasta we gave you last time? Did that give you any pains in your shoulder, lower back, joints, or large limbs?"
"Nope!"
"I see you don't have the cane with you this time [I think I've been cane-less since July 24, actually]... are you walking okay?"
"Well, I'm up to three to four miles walking at a stretch, with no cane, plus an hour or more on the stationary bicycle, plus core-strengthening exercises as recommended by my physical therapist."

At this point I had to reassure him that I really would let him know if my progress in some area were less than fantastic, but that things really did seem to be going well.

Finally, when we weren't establishing how great I was doing, I also learned from this meeting that:

1. My white blood cell numbers and absolute neutrophil counts are back up to the low range of normal (4.4 and 2.8, respectively, up from 2.3 and 0.6 last visit),* and so we will plan to continue with an injection of Neulasta following each chemotherapy treatment.

2. We will likely, as planned, do another CT (computed tomography) scan following the fourth chemotherapy treatment, to track the progress -- hopefully, obviously, the drastic reduction -- of the tumor in the paraspinal area. However, regardless of what this scan shows, Dr. Dana's intention would be to follow protocol and to schedule me for a full course of six treatments, in light of (a) the substantial (4-cm) size of the initial tumor and (b) my extremely positive response to treatment.

And that is all. Three treatments down, three to go. If they get easier near the end, even if only for psychological reasons, why, this will be a piece of cake by the time I'm finished.

* For those very curious about the specifics, normal ranges here are 3.9 - 10.8 x 10^3/ul (for WBCs) and 1.8 - 7.7 x 10^3/ul (for ANCs), respectively.

On the road

Sun, 05 Aug 2007 23:06:43 GMT

I am off to Michigan later this week, for a long-planned family wedding (a cousin's, not my own. I would say there is a decent chance that my own wedding will be in Michigan some time next summer, though precise time and date -- the other location possibility would be Portland -- are still forthcoming.) It should be jolly. It also means that I will likely be out of email range for the next week-plus, through approximately August 14 or so. Therefore, should you write to me in that time (thanks for that), I will probably not get back to you until a week from now or so. But I will get back to you then.

Happy travels.

P.S. Traveling while bald and alopetic means that I don't have to bring: a razor, shaving cream, or shampoo. Pretty handy.

Engagement ring pictures

Sat, 04 Aug 2007 04:24:31 GMT

When not busy being the world's happiest cancer patient (hey, it's a tough job, but someone has to do it), I have also been laying claim to the title of world's happiest fiancé. On that latter note, here are pictures of a certain new ring on someone's hand, and that certain someone beaming over such:

(Click on either picture for a larger version.)

The ring itself is a medium-sized sapphire, between two smallish diamonds, set in a band of white gold. We -- by which I mean Julie, though I did help (I told her to go for the larger diamonds), and actually did enjoy getting to be involved in the process more than I had frankly anticipated -- designed it ourselves. The blue of the sapphire is very snazzy; I am quite pleased how well it all came out.

July 31 appointment with Dr. Dana

Thu, 02 Aug 2007 04:07:09 GMT

Overview

I was seen by Dr. Dana, my oncologist, prior to my second chemotherapy session, on July 31. We discussed two things before getting to my questions (below), last week’s CT scan of the abdomen and pelvis, and my most recent blood count numbers and what they suggest.

On the one hand, my July 27 pelvic/abdominal CT (computed tomography) scan is totally clear. That is, it shows no abnormalities (“no intra-abdominal abnormality is seen”), and does not suggest an additional tumor site in that region. (Plus, I also have no kidney stones, gallstones, liver, or spleen problems, either.) What the previous CT scan picked up as either loops of small bowel or (much less likely) a second tumor in the immediate vicinity is just small intestine. So, to repeat, there is only one known tumor site within me – the paraspinal lymphoma we have been dealing with for the past five weeks – and that does not appear to have spread to anywhere else in the body. This is very much a good thing.

On the other hand, my white blood cell counts – specifically, my neutrophils, an infection-fighting agent that is the most common kind of leukocyte, or white blood cell – are low. This is not good, as it brings with it an increased risk of infection, but this is also something that can be dealt with. (I would also note that an increased risk of infection, while problematic, does not automatically translate to the actual contraction of an infection; by virtue of scrupulous hand-washing and the like, and/or simple clean living and dumb luck, I have yet to contract an infection, despite severely reduced white blood cell and neutrophil counts over the past few weeks.) The solution is an injection of Neulasta, a hormone that is an example of a granulocyte colony-stimulating factor, which stimulates the bone marrow to produce more granulocytes, stem cells, and, ultimately, neutrophils. This injection can be given one day following each chemotherapy session, which we did today, following yesterday’s chemotherapy treatment, and will do four more times after each of the subsequent treatments. It took about one minute. I am told that it brings with it the risk of aches and pains in large bones, because the bone marrow has been effectively supercharged (“welcome to arthritis, kid!” one older patient told me, not unkindly, in the treatment room yesterday), but so far, so good. [Edit: As of several days later, no real bone pain whatsoever. Lucky me.]

Now, on to my questions for Dr. Dana (casual readers should feel free to stop here).

Questions

Much as with Dr. Antezana a week before (who said, appreciatively, upon seeing my list of written-out questions, that I would make a great lawyer someday), Dr. Dana seemed grateful for a patient who was quite so well prepared, and/or literate. At least, his immediate reaction was, “That’s a great list.” His final comment was, “Can I keep a copy of this, for the URL” in question five? And, as noted (under that question), I would seem to have changed standard NW Cancer Specialists office protocol for the work-up of B-cell lymphomas. So good for me.

Here are the questions I asked Dr. Dana yesterday morning:

1. What else can I do, if anything, in terms of my daily diet, behavior, and activities, to maximize the potential for success of my treatment?
Not much, to be honest. I actually asked this question of Dr. Hayes-Lattin, at OHSU, a few weeks ago. What he told me then was, “You know all those things that doctors tell you to do on a normal basis, like wash your hands all the time, especially when you’ve just been around sick little children, and brush your teeth twice a day, and get plenty of sleep, and don’t drink or smoke, and eat a well-balanced diet with plenty of green vegetables?” (“Well yes,” I said, “yes I do.”) “Well, that’s what you should really be sure to do now,” he said. Dr. Dana expressed similar sentiments.

2. Can I expect the effects of the side effects to be cumulative, or merely sequential? That is, even though I feel great after just the first treatment, is it plausible that I will feel far worse come treatment five or six?
“Cumulative versus sequential – that’s a great way to put it,” said Dr. Dana. Sequential, basically, is the short answer. Specific side effects, and their intensity, may vary somewhat from treatment to treatment, but I should not anticipate that they will be far worse by the end of a course of six treatment sessions. If anything, Dr. Dana said, people often feel better by the final treatment, because of the “light at the end of the tunnel” effect. And now, one day after the second treatment, I can report that I fared better after this second one than in the first (no vomiting this time, only nausea), so there is, clearly and thankfully, room for improvement as well.
[My additional comment, on physiological and psychological interaction in difficult physical feats: As anyone who has ever competed in nearly any type of sporting endeavor likely knows, it is typically possible to speed up to sprint in the very final portion of a race, even if one should be, physically speaking, more tired at that point than at any point heretofore. Similarly, if doing, say, six intervals of equal length and hardness, I have to consciously hold myself back a great deal to keep from making the sixth and final interval be the fastest of the day. So I clearly know what Dr. Dana is talking about, as regards approaching the end of a difficult project. Furthermore, it made me think of this Feb. 2006 New York Times article on the Slovenian ultra-cyclist Jure Robic, of stunning athletic accomplishments and questionable mental stability, discussing recent research suggesting that fatigue is “less an objective event than a subjective emotion – the brain’s clever, self-interested attempt to scare you into stopping. The way past fatigue, then, is to return the favor: to fool the brain by lying to it, distracting it or even provoking it” (quote from page four of the lengthy article). So I’ll see what applicability this may or may not have for my chemotherapy sessions, but I would recommend this article as a fascinating read to anyone out there who pursues endurance sports.]

3. What will we know about this tumor’s response to R-CHOP chemotherapy following the initial course of, let’s say, six treatments?
By means of performing another scan at, possibly, four treatments, and definitely after six, we will know how effective the R-CHOP chemotherapy was. Depending on its efficacy, possible options at this time include: nothing more in terms of chemotherapy, because the lymphoma has disappeared; nothing more in terms of chemotherapy, because the lymphoma has disappeared, but a short course of radiation to increase the chances of the lymphoma’s staying in remission; more intensive radiation, high-dose chemotherapy, and/or a stem-cell transplant (could all be considered), if the lymphoma has shrunk somewhat but has not disappeared; then possibly a different chemotherapy regimen than that used before, if the lymphoma is resistant to the first treatment. (Okay, I got much of that from current NCCN treatment guidelines; Dr. Dana’s response yesterday was basically just the first sentence above, presumably reflecting his intention to let six doses of R-CHOP chemotherapy run its course before seeing where we stand.)

4. You previously explained to me that Adriamycin, as an anthracycline drug, brings with it the risk of cardiotoxicity. I have since read about the role of a MUGA scan [Multiple Gated Acquisition Scan, a nuclear medicine test to evaluate the function of the heart ventricles; similar to an echocardiogram, but non-invasive, or so says Wikipedia] in measuring the health of the heart, particularly the left ventricle. Is this an appropriate thing to do at this time? If not, do you have plans to order a MUGA scan later in my planned course of chemotherapy, or perhaps more than one to track my LVEF [left ventricular ejection fraction, a measure of the portion of available blood pumped out of a ventricle with each beat, and therefore of the overall strength and health of the heart muscles] as treatment continues?
No, and no. In light of my age, strong cardiovascular health at the outset of treatment, and lack of risk for cardiac problems, from either lifestyle or family history, Dr. Dana does not consider this a necessary test to perform at this time. This would change if further chemotherapy becomes necessary after the initial course of six treatments, and there arises the possibility of wishing to give me more Adriamycin, which would in turn bring me closer to the lifetime threshold at which cardiotoxicity becomes a concern.

5. A June 20 update to NCCN [National Comprehensive Cancer Network, an alliance of 21 cancer centers nationwide] NHL [non-Hodgkin’s lymphoma] Guidelines states, “Testing for Hepatitis B has been added as ‘essential’ to the work-up of all B-Cell Lymphomas because one of the drugs commonly used to treat them (Rituxan, Genentech) can cause a dangerous interaction in Hepatitis B patients” (cite). I have been vaccinated for Hepatitis A (in 1996-1998). I have not been vaccinated for Hepatitis B. Should I be tested for Hepatitis B prior to my third administration of Rituxan?
Well, the good news is that they’ve already screened me for Hepatitis C, and I don’t have that. The other good news is that they can and will screen me for Hep B – and they can do so using the blood work they got yesterday morning before treatment, so they don’t even have to stick me again to test for that. And, big picture, perhaps the best news of all is that I seem to have changed the clinic’s work-up protocol for new patients with B-cell lymphoma, which is what comes from having patients as well-informed, and modest, as myself on one’s roster.

6. Can you tell now whether I have germinal-center or activated B-cell NHL? (I’m assuming I don’t have mediastinal lymphoma.) Even if you could, is typing the disease to the level of its molecular subtype a clinically relevant thing to know at this time, i.e., would knowing this change the care I am currently receiving?
- I have follicular-origin B-cell NHL (but not follicular NHL), which is a synonym for germinal-center NHL.
- Typing the disease like this is not, strictly speaking, clinically relevant, in that an initial course of six doses of R-CHOP chemotherapy would be the recommended treatment for me in either case.
[I certainly believe Dr. Dana that making this distinction is not clinically relevant at this time. However, my ulterior motive for asking this is that my own research suggests that five-year survival rates are roughly twice as high for germinal-center B-cell lymphoma as for activated B-cell lymphoma (July 2007 article in Blood 110:1, esp. Table 3; June 20, 2002, article in NEJN, esp. the Discussion, suggesting that one reason prognosis is so much better for lymphomas with the germinal-center B-cell gene-expression signature is that, compared to other types of lymphoma, this type lacks an, er, certain type of nuclear factor pathway, which, when present, blocks the apoptosis (cell death) induced by chemotherapy. I.e., as I read this – with my poor Classics major struggling for all it is worth – the gene-expression signature of my germinal-center B-cell NHL makes me more conducive or readily susceptible to chemotherapy, because my body can more readily process and deal with the (desired) cell-death that the chemotherapy induces.) So whether or not I got all of the science correctly explained there, I have little doubt that prognoses are significantly higher with germinal-center than with activated B-cell NHL, and so I am certainly pleased to learn that I have the former.]

Bicycle!

Sat, 28 Jul 2007 04:38:21 GMT

Bicycle!

I can ride my bicycle (indoors, on the trainer) now, which means that, for the first time in six weeks, I have a source of aerobic exercise. (Incidentally, this may be useful as an aid in my rehabilitation from the laminectomy, and/or as a manner to create new red blood cells, to counteract the chemotherapy that kills them off.) I also have a new iPod, to keep me entertained while on said bicycle. Finally, I have a new white cycling cap, to keep me cool while on the bicycle indoors, or to keep the sun off while off the bicycle outdoors. Julie is responsible for both of the latter two presents. Stephanie, the fit specialist at Woodstock Bike Gallery, is responsible for helping me through the necessary adjustments to make the bicycle fit. (The handlebars are now several inches higher, and closer to the seat, than they were in my earlier, pre-surgery setup.) Life is good.

Haircut

Thu, 26 Jul 2007 23:15:15 GMT

So, earlier this week, I noticed that my hair was starting to fall out. This is by no means surprising; hair loss is a predictable effect of chemotherapy, and happens on a known schedule, beginning around two weeks after the initial chemotherapy treatment. And the first treatment concluded on July 11, which means that two weeks from there is the 25th, or yesterday. And so it came to pass that I noticed I was shedding. I was, frankly, minorly surprised – not because I thought I was superhuman, and would somehow avoid the side effect that befalls everyone, but just because it has been ten days or more since I have noticed or experienced anything that reminded me that, oh yes, I am currently in the middle of chemotherapy, and that these are fairly dire chemicals to put into one’s body, with potent side effects. So, with good-humored surprise, I realized this morning that my pillow was a mess with hair that had fallen off while I slept. I thought briefly of going downstairs and setting up shop on the cat’s favorite, cat hair-encrusted arm of the couch (see how you like that, Susitna!), but then decided that I was better than that.

I did, however, get a relatively drastic haircut, an event that inspired the following historical retrospective (you can click on any picture for a larger version, then on the resulting image for a picture that is larger yet):

Gavin's Hairstyles Through the Years: A Pictorial Retrospective

Mid-1980s - Sept. 2006: A ducktail, which begat a rattail, which begat a pony tail of, ultimately, goodly length:

2002, Alaska (above Eagle River Valley), hydrating

2005, Ireland (on Inis Oírr, one of the Aran Islands), throwing rocks into the ocean

Oct. 2006 - July 2007: A relatively normal haircut, of a moderate length:

2006, Alaska (Moosemire Lake, near the cabin)

July 2007ff.: No more hair!:

This afternoon, Portland (by the front door)

Of which the overall historical moral must be, thank goodness for the 2006-2007 moderate-hair-length interregnum, as to have gone from a full ponytail directly to a shaved head would have been a bit of a shock.

On general wellness, or, how am I doing these days?

Wed, 25 Jul 2007 18:21:42 GMT

To answer a question that is asked of me with some frequency these days, I am doing great right now. I don’t mean by that that I am suffering physically, but am continuing to keep a good outlook by virtue of my positive worldview, nor do I mean that I am faring well physically, but am emotionally crippled by events of the past few months. Rather, I really do mean that I am doing quite well, with few complaints whatsoever.

There are really two distinct components to my present health care needs: rehabilitation from late June’s major back surgery, and intermittent chemotherapy for a lymphatic tumor in my paraspinal area. On the one hand, my rehabilitation is proceeding very, very well. Four weeks ago yesterday, I came home from the hospital, which I did only with some difficulty, and was using a walker to get around the house. Three weeks ago, give or take, I had completely abandoned the walker, and could get around, both inside and outside, by using the cane. By two weeks ago, I’d progressed from 100 yards walking, with a cane on one side and a firm grip on someone’s arm on the other, to 1.5 to two miles walking at a stretch, albeit still with a cane. And by a week ago, I’d decided that I could get around entirely without the cane, and have not been using it at all, either inside or outside. I’m now up to two miles walking at a stretch, with no cane. So that feels like progress to me. My physical therapist, meanwhile, tells me at every visit how fast I’m progressing, and says he’s had laminectomy patients take literally months to achieve the progress I make between weekly visits. And my neurosurgeon was similarly positive (see yesterday’s lengthy post). So good news there all the way around.

On the other hand, the chemotherapy may feel more like a necessary evil, but even that has not been too bad to date. I have, admittedly, had only one session to date, on July 10-11, but here was my recovery timeline from that:

• July 10: first dose of drugs; July 11: second dose of drugs
• Afternoon of July 10: felt tired, took a nap, was otherwise normal, except that I felt like I’d been through a lot, so I had two desserts after dinner that night (July 10 drug was Rituxan, which directly targets the tumor, and so avoids many of the side effects of the other three intravenous drugs given on the 11th, which affect cells more systemically)
• Afternoon and evening of July 11: fairly nauseous, threw up three times in ten hours, then slept through the night
• July 12: fatigued, stayed in bed for the majority of the day, but no more nausea
• July 13: slept ’til 10 or 11, but was then up and about for the rest of the day; a little slow-moving, perhaps, but not enough to prevent me from going out to dinner, then going to a party from 8:30 to 11 p.m. following
• July 14: maybe still a little slow, but otherwise close to back to normal

So there you have it – one day of nausea, two days of fatigue, and then pretty much back to normal. I don’t mean to make light of the process; chemotherapy clearly involves putting some very powerful drugs and chemicals into one’s body, and I can definitely tell that it has an effect. (I’ll spare you all the details, but there were other bodily effects that, while more subtle, persisted for a few days more. But even these have totally subsided for a week or more by this point.) And I know that everyone has a different experience with these drugs, and that my experience could get much worse before it gets better. Or finished. But, at least based on the first treatment session, my reaction has to be, This is not too bad. Chemotherapy is hardly something I would seek out for fun, but, as a highly effective way to treat an aggressive tumor, it is clearly worth doing. And if, as appears, I can spend approximately three days in each three-week period Officially Having Cancer, then the rest of that interval living life virtually normally, that doesn’t feel like that bad a trade-off at all.

So that’s me these days – at home a bit more, perhaps, but also reading more, eating more, and seeing more friends. And Julie continues to feed me very well indeed. Truly, no complaints.

July 24 follow-up appointment with neurosurgeon

Wed, 25 Jul 2007 04:34:15 GMT

I saw Dr. Antezana, my neurosurgeon – a very nice, relatively young guy, in addition to, by all accounts (and my personal experience), a very competent neurosurgeon – for a follow-up appointment earlier today. For those of you keeping score at home, it has now been four-plus weeks, nearly one month exactly, since my June 22 four-vertebrae laminectomy, over vertebrae numbers 8-11 in my thoracic spine (T8-11). The purpose of this appointment was to check on my progress to date, regarding rehabilitation from the laminectomy, and to have a preliminary conversation about my spinal fusion, the second surgery necessary to restore my spine to a stable condition. (Practically speaking, my spine is mildly unstable at this time. It’s stable enough that I can live a fully-faceted sedentary life, and do anything that you or anyone else would in, say, an office desk job. It is not stable enough to go running, or to fall down while playing sports, without the potential for injury. To anticipate some of the questions and answers below, or at least the most important one for me, I can indeed run again after a spinal fusion, following appropriate rehabilitation, which works for me.)

While I am doing very well in chemotherapy, and, thankfully, am actually experiencing very few side effects from this aspect of my lymphoma treatment, spinal fusion still counts as major surgery, too, and so will not happen until after the chemotherapy is concluded. Dr. Dana has previously told me that I will have four to six sessions of chemotherapy, spaced at three-week intervals. From what I have read elsewhere about standard treatment protocols, I would suspect that we will start with the first four, then do another CT/PET scan after the fourth treatment session, and see what the tumor looks like at that time before deciding whether to proceed with additional treatments. In any case, four sessions of chemotherapy would put my last treatment on September 11. Six sessions would take me through October 23. Regardless, assuming that all goes well on the oncology side of things, it looks like the spinal fusion will happen this fall, and certainly by November. That means that, while an extended rehab would still be in the offing, I could easily be done with major surgery by Thanksgiving.

I came in with written-out questions, so what follows are those questions, interspersed with Dr. Antezana’s answers thereto. (When I told him that I had several written-out questions for him, then handed him his own copy of a list, he looked at the list, then said, with appreciation, “You’ll make a good lawyer someday.”) Here’s the money quote, though, regarding my overall progress to date, and how he would characterize the success of the surgery and speed of my recovery: “Given how you presented when you came in, and where you are now, I think any of us is as happy as we can possibly be” about my progress. So, uh, good job me.

Here are my prepared questions, with answers following:

1. Can I bicycle now? (On a trainer, in an upright position, following a professional bike fit consultation, if necessary.)
Yes, yes I can. I went by the Bike Gallery (local bike store) this afternoon, following the appointment, to sign up for a professional bike fitting; this will happen this Friday. The goal is to do something to let me sit on the bike in a more upright position than I typically would on my performance road bicycle – likely, some combination of a much taller stem and raised handlebars, with a jury-rigged solution to get the gear-shifts up higher as well, would do the trick. I’ll still be inside on the trainer, so I won’t need the brakes, and it doesn’t have to look pretty, either. But it will be enough to ensure that I can get some aerobic exercise in, albeit at a reduced level because my red blood cell counts will be compromised by the chemotherapy, and that obviously means a great deal to me.

Also, riding on the trainer will, in yet one more way, liken me to Lance Armstrong (someone else who got cancer at 25, and, I like to think, a good role model for both cancer and life after treatment): here is a probably illegally-copied excerpt from his book, Every Second Counts, describing his riding during treatment.

2. Can I run following a spinal fusion? In general, what sort of limitations on my mobility can I expect?
- Yes, yes I certainly can, but not right away. It will take me around three months following surgery before I’m back up to “normal running.” (“Define normal running,” I said. “Not more than five or six miles at a time,” he said. “Three or four miles a day would be a good start.” “Wow,” I managed not to say out loud, “three to four miles hasn’t been a daily running total for me in over a decade.” Of course, I was mainly thinking, “This is fantastic, he’s absolutely not telling me that I’ll never run again, which was my worst-case scenario coming in here today,” so, realistically and less snidely, no complaints there.) Four to six months after that, I should be able to do just about anything I want to. “It’s your life,” Dr. Antezana said. “You don’t want to live it scared, or not doing things.” I thought this was a great attitude. I also bet I can hit the four-month mark of a four to six month recovery window.
- There will be some limitations on my mobility, to be sure; you don’t fuse together nine vertebrae without doing something to one’s ability to move one’s back. However, because the vertebrae in question, T5 to L1, would be almost entirely within the thoracic spine, and this portion of the spine is almost entirely in line with the rib cage, the loss of mobility shouldn’t be that great. From what I’ve read, compromised movement is more of a problem with the much more standard two- to three-vertebrae fusion in the lumbar spine, as a fusion here in the lower back directly impacts one’s ability to bend over in a manner that thoracic fusion does not.
- Here is a diagram of the spine from Gray's Anatomy (the book, not the TV show)

3. How do you do a spinal fusion when a patient is missing four lamina, anyway? Are the spinal processes still there?
- Put the grafts along the sides of each vertebra, rather than directly down the center.
- No, he took out the lion’s share of the spinal processes over those four vertebra (T8-11).

4. How (un)stable is my spine now, post-laminectomy and pre-fusion? If someone heartily claps me on the back, am I going to be paralyzed? What about post-fusion... do I need to go through life wearing a motorcycle flak jacket to protect my spine?
- My spine is currently mildly unstable. (But note that I’ve been cautioned away from no activities save bending, lifting, or twisting, and it’s not so urgent a matter to do the fusion that it has to happen alongside the chemotherapy.)
- No, no I would not be paralyzed from such a movement. To paralyze me would take, and this is a quote, a knife in the back, which I should have little trouble continuing to avoid.
- No, I will get to go through the rest of life fairly normally (except, I would add, the titanium rods in my back will cause me to set off airport metal detectors for decades to come).

5. How much of each lamina was taken out? E.g., what portion of an arc?
The vast majority of these four lamina was removed.

6. What effects will a six-dose course of R-CHOP chemotherapy have on my ability to prepare for and recover from a fusion? Are there any drugs they may not be able to use, or is there an increased risk of infection from a chemotherapy-compromised immune system? Are there other considerations for entering major surgery like this following even an effective course of R-CHOP chemotherapy?
- It will slow my entire recovery system down a little, because they are very powerful drugs, but not greatly.
- There is always an increased risk of infection following chemotherapy, due to the decreased white blood cell count that it induces (or the leukocytopenia, if you will; to my mind, it’s as if they just took all the blood-related terms they wanted to use, ran them through a one-to-one English-to-Greek translator, then used the results as their English term; if you’re a Classics major and are going to get any form of cancer, one based on a hematological malignancy is clearly a good choice, as it’s so easy to follow all the polysyllabic medical terms). However, that increased risk is hardly so great as to cause specific concern about this follow-up surgery. In addition, in my particular case, given my youth, and my positive response to chemotherapy thus far, this increased risk should be (his term) negligible.
- “I could write you a book” on the potential complications of a spinal fusion, he said. However, recent completion of R-CHOP chemotherapy won’t add any major ones.

7. Last (sixth) dose of chemotherapy is scheduled for Tuesday, October 23. Let’s say that, on November 1, Dr. Dana says that, for the time being, I am in remission. When would you want to do surgery?
ASAP.

8. Let’s say I’m officially in remission on November 1, and we do fusion surgery on November 2, and then on November 15 there’s a relapse (for the lymphoma). What complications would result, for my cancer treatment, from the recent major back surgery? What are the other considerations that go into potentially dealing with both medical problems simultaneously?
As question six got at as well, chemotherapy is a big deal. That said, by the time Dr. Antezana, in conjunction with oncologist Dr. Dana, decides to go ahead with back surgery, he will do so on Dr. Dana’s reassurance that I am in remission for the time being, and that the anticipated need for further treatment for the lymphoma is minimal. Dr. Antezana and Dr. Dana work in the same building; Dr. Antezana referred to Dr. Dana by his first name, and said he was a great guy and a very good oncologist; they’re clearly prepared to work together to make sure that Dr. Antezana acts only at the best time to move forward with the fusion.

9. What is the likely or predictable recovery and rehabilitation timeline following spinal fusion?
Three months before I “feel like I’m going forward” (i.e., the first three months following surgery could be fairly difficult, but oh well, I’m sure I can manage), six months before I can resume strenuous activities.

10. Will I be taller / stop slouching / be 5’9” again following fusion? [For background, I have been measured at 5’7”-plus following the laminectomy, an inch and a half shorter than I was prior to surgery. I can also tell, from looking in the mirror, that I have developed a bit of a perma-slouch. That’s what this question is designed to address.]
He can get me back about two-thirds of this loss in height by means of the fusion. 5'8" and a half, here I come.

And there you have it. We went through the above, he tested my strength and movement in a few different ways – midway through, he grinned up at me, and said, “You're getting stronger” – and then we got sent home to go play in the sunshine on this lovely day. We stopped by the Bike Gallery, where I made my Friday appointment for a personalized bike fitting, then Julie and I walked 1.8 miles in the shade on a local tree-lined boulevard. So, a successful afternoon all the way around. And, to repeat the bottom line evaluating my progress, they (Dr. Antezana and his PA, Lisa) are “as happy as [they] can possibly be” about how I’m doing. Hard to get much better than that.

pictures!

Sun, 22 Jul 2007 19:11:59 GMT

Here are some recent pictures of Julie and me (behind the link, so this page still loads quickly):

I am a relatively unconcerned cancer patient, v. 1 (with Julie, at a nice dinner out, early July):

I am a relatively unconcerned cancer patient, v. 2 (in which I still have hair, which might not be the case for too much longer):

I am still unconcerned, plus we have a cat (as taken with the built-in camera of my new MacBook Pro laptop):