Breathing Room

Update - 11.20.11 CT Scan

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6 months ago • 6 notes

Update - 10.20.10 PET Scan

This is going to be a relatively short update, but it contains mostly good news.
First, the big one: I had a PET scan earlier this week, and there was no visible disease on it. That’s a Complete Remission.
Now I’ll probably get treated for another 4-6 weeks to consolidate this progress. I will definitely get two more chemotherapy/monoclonal antibody treatments. My doctor may also add a course of radiation therapy. The last two or three times I have had visible disease, it has started in the lymph nodes near my right lung. It’s possible – though by no means certain – that zapping those nodes could help cure the disease. It’s also possible that irradiating my lungs (again) could do more harm than good. My oncologists will have this discussion amongst themselves and then give me a recommendation in the next month or so.
After that, I’ll probably get a Donor Lymphocyte Infusion – another transfusion of my brother’s white blood cells and stem cells. Hopefully that will trigger an auto-immune reaction where the cells attack my body as well as the cancer.
Secondarily, I’m working on other parallel tracks to build up my immune system – which is the agent that is going to fight off the disease if I am to be cured. The first priority is to get the system focused on the right targets, e.g., getting it to stop overreacting to things that aren’t diseases.
I have had a bunch of issues with allergies and overly-active inflammatory responses, both of which aggravate cancer – the former by diverting the immune system into unproductive overreactions, and the latter by creating high levels of inflammation-related chemicals, which the disease highjacks and uses to propagate itself.
Dealing with this has meant that I have a bunch of consulting dieticians and naturopathic doctors – I take supplements like concentrated fish oil and aloe vera, and I get acupuncture(d) once a week. Acupuncture has been an interesting experience – I get treated at a Chinese herbalist/MD’s office in Chinatown, and it has been a very interesting seeing a scientific approach to medicine whose conceptual foundations are so different from Western medicine. The acupuncture has helped me with pain in my joints, and my energy level, it has also had an effect on my circulatory system; my resting heart rate is way down, for example.
It’s astonishing how the needles can affect you – sometimes it feels like an enormous weight is slamming into me when they put them in. I actually occasionally have to open my eyes to see that there is nothing there but the needle. I don’t really know what the Western explanation for acupunctures’ effects is – everyone seems to agree that it can help with pain and other issues – but there’s clearly something to it. I also started doing yoga, which just about everyone seems to think is a good idea, for all sorts of reasons.
Probably the hardest thing I have had to do is reduce my exposure to allergens. There is an association between recurring lymphoma and Celiac Disease and Celiac sensitivity – allergies to wheat and wheat gluten. Dairy allergies are also common in lymphoma patients. One of my naturopaths suggested I try a no-dairy and no-gluten-no-wheat diet. I used to eat a lot of pasta and yogurt and cheese. Those were the obvious changes I saw coming right off the bat. I did not realize that wheat gluten is in almost everything.
For example, rice is gluten-free, so you’d think eating more Asian food is an easy solution to the gluten ban. Not so much: almost all Asian sauces include some soya, and soya is made with wheat – unless it’s made in the Thai style, usually called Tamari. That, and the cultural and linguistic difficulties communicating allergy and food safety issues at most Asian restaurants combine to make it very difficult to get gluten-free Asian food.  
To make matters worse, a lot of the gluten-free food that’s supposed to help make the diet more tolerable is stuff like flatbread pizza, burritos and quesadillas made with corn tortillas, omelets, and cream-based soups. Just about everything appetizing on most gluten-free menus has some dairy in it. If you happen to be on a no-dairy-AND-no-gluten diet, you’re really in trouble.
What makes this situation particularly frustrating is that I am on a steroid regimen. On the days when I take the steroids, I cannot sleep.  That tends to go away after I stop taking the pills. But long after I am done actually taking the steroids, they affect my appetite.
My need for food is staggering. For my birthday, my lady friend took me to Shaw’s Crab House, one of the nicer seafood places in the city. They have a brunch buffet that runs the gamut from omelettes to seafood and sushi to desserts. My performance that morning has been described as “epic.” I probably ate 2-3 times as much as anyone else at the table did. After substantial dinners out, I usually have to eat again within an hour. I’ve gained about 12 pounds since this started, about 8% of my normal body weight. Eating a lot was pretty fun for a while, but since I can’t eat most of my favorite foods and most restaurants can’t accommodate my food restrictions, this has been a hug hassle for the last month.
The good news on this front is that my allergy tests now say I am allergic to cow’s milk, but not goat or sheep’s milk, so I might be able to eat SOME cheese soon. I’ve been a big cheese fan for as long as I can remember – the prospect of never eating it again was pretty upsetting.

All in all, the news this time is very positive, and worth celebrating.
At the same time, everyone should keep this news in context. I’ve had Complete Remissions before, and they haven’t lasted very long. The trick with my disease is not knocking it down, it’s getting it to stay down. If we can do that, then it will really be party time.

In any case, the news is good enough that I feel like I can apply to graduate schools for next year. I think if the news had been bad that I would have most likely given up on that goal, at least temporarily. At the very least, it would have taken a lot of pressure from friends and loved ones to persuade me to give it a shot. So, great big thanks to those helped me think through the school decision these last few weeks, and thanks in advance to all the other people who are going to help me through the process – and my inability to handle it without freaking out occasionally - over the next few months.


DS

1 year ago • 11 notes

Post-Transplant PET Scan

I am about 80 days post-bone marrow transplant. 100 days post-transplant is sort of a landmark - acute Graft vs. Host Disease occurs during the first 1-100 days. By Day 100, patients making good progress have their immunosuppressive drugs tapered off, and can return to normal activities like watching movies in theaters, taking public or shared transportation, eating in restaurants, raw foods and imported cheese, etc.

Before they cut down the immunosuppressants, my transplanters did a PET/CT scan. PETs use radioactive sugar to measure the metabolism of living tissues. Cancer burns sugar faster than normal cells, making PET scans the gold standard in detecting cancer. If the PET showed growing disease, they would have to take a more aggressive approach to cutting the drugs in order to quickly do something drastic - giving me additional white blood cells from my brother, or another mini-transplant, or something else. Those measures are considered drastic because they dramatically increase the odds of life-threatening complications like Graft vs. Host Disease. Progressive disease at this stage would also reduce my odds of survival significantly.

I got scanned on Monday, and got the results on Wednesday. All the humans here - Ben, my mom. me - were pretty on edge for 48 hours. That is to say, we were on edge even compared to our generally nervous state for the preceding weeks. The cat, Anastasia, seemed to take it pretty much in stride. Superior lifeforms… My transplanter said the results were 90% positive, 10% ambiguous. He’s not willing to give the all-clear, but he’s happy with how things are going.

The 90% good: no definite disease anywhere on the scan. A bad scan would show multiple, very bright tumors.

The 10% ambiguity: a single lymph node less than 1cm in diameter above the right lung that has higher than normal metabolism.  My transplanter doesn’t think it is disease, but can’t be sure. The only way to be certain would be to cut it out and analyze the tissue. That would require a procedure that would further damage my airway and risk infections (plus the healing would complicate future scans) - diagnostic surgery on immuno-compromised patients is generally discouraged. This node is responsible for draining lymph from the upper right lung area (lymph is a fluid medium for the immune system and the body’s repair mechanisms). I’ve had three surgeries in the immediate vicinity. The last one severely cracked  a rib nearby and cut out a little less than half of the lung. There is a lot of scar tissue and inflammation in that part of my body, normal for a healing surgical injury. When I have seasonal or food allergy attacks, the scar tissue gets noticeably swollen and inflamed. Inflamed, infected or healing tissues also take up sugar at higher-than-normal rates (they light up like cancer does). The only way to distinguish an inflamed node from a cancerous one is to watch it over time - if it gets brighter and bigger, it is most likely diseased.

As I mentioned, if there were a serious problem, they would get me off the drugs as fast as possible and start taking drastic measures. They’re taking things slowly and carefully instead. They are going to scan me again in 6-8 weeks. Normally, at this stage, I’d have to wait 12 weeks between scans (they’re awfully expensive). They’re cutting the interval in half just to be sure of that node.

So, on the whole, this is good news. It isn’t ideal - that would be a clear scan with no ambiguous nodes. In the world of recurrent, drug-resistant Hodgkin’s Disease, though, test results are rarely 100% clear.

Two notes of behavior-explanation:
1) Why did I explain all the science and date stuff before giving you the results? I can see how that would be obnoxious, causing frustrated scrolling/skimming. I tend to the pedantic, verbose, whatever. You could reasonably complain, but kindly do so in another direction: I have to wait months at a time to know if the cancer is gone. Impatient correspondents can consider reading a paragraph or two of background information a bonding/empathy-building exercise. Multiply the time-scale of your frustration a few thousand times, confine yourself to your home, and add the fear of slow death - voila! we’re on the same page.
2) Why am I not ecstatically happy about this? In a way it’s nice that my friends and loved ones still have the presumption to question whether I am suitably happy with my lot. It shows people aren’t overly concerned with sparing my feelings, handling me with kid gloves. You also obviously want me to be happy. My emotional state is consistent with my life situation, which is - with the exception of cancer - pretty fun. Winston Churchill used to call his capricious dark moods the Black Dog. I know the Black Dog, and this isn’t it. I mostly enjoy myself, day-to-day, as much as can be expected. When I am not happy, I am tired, frustrated, lonely or bored, not brooding myself into misery.
I’ve been technical remission since October, when I had that surgery on my lung. That doesn’t mean the cancer is cured. Neither would a completely clear PET scan at this stage. I’ve had brief remissions before. I’ve been here - the disease seemed to be gone, except there were a couple of troubling, ambiguous spots on a scan. A while later, the spots were bigger, brighter, and the disease was back. All cancer survivors live check-up-to-check-up. I’m aware that one can’t live a fulfilling life waiting for the other shoe to drop. One solution to this is positive self-delusion; alchemically transforming cautiously-optimistic news into best-possible. I can imagine that working for folks, but it’s not my way. A man’s got to know his limitations, and my capabilities don’t extend to genuinely convincing myself things are great when they’re gradually improving and subject to reversal. I’m not against happiness and don’t resent congratulations; I’m merely opposed to overstating the case for optimism.

I’m cautiously optimistic and looking forward to having my freedom back. I’ve missed out on a number of important events these last few months, and I’ll be able to travel and see my friends and loved ones again this summer.

In other medical news, the white blood cell battle is ongoing. In Hodgkin’s, Bone Marrow Transplants work - if they work - by mobilizing donor white cells to attack the recipients’ cancer. They also do other useful things, like fighting off the infections one randomly encounters in the course of daily life. Many of the drugs I take - not just the immunosuppressants  - can cause low white counts. Mine were frustratingly low for a while, so the docs started playing around with my medicines. They’re still low, but gradually increasing. If they don’t come up as the suppressants are removed, I’ll have to have a bone marrow biopsy. I’ve had one before, and if you watch House or ER, you’ve seen them on TV. They love to show bone marrow biopsies and lumbar punctures, because they involve huge needles and extreme pain. I’ve never had a puncture, but the biopsy gave me nightmares for more than a year. In the meantime, to keep the white counts at safe levels, I have to get booster shots. They contain a cloned version of a chemical transmitter that stimulates white cell production. The shots are painful on injection, and cause bone and joint pain for days afterwards. I usually get one or two a week.

A related issue is chimerism. These are basically DNA tests on white blood cells. The cells produced by my original bone marrow are genetically different from the cells my brother gave me. They’re sufficiently different that the share of circulating cells originating from the donated marrow can be measured. This is a proxy for measuring the functional share of active bone marrow, comparing donor marrow vs. the recipient. When the marrow graft works, all my white cells will be produced by donor marrow. The tests check three sub-types of cells. The first two categories are supposed to be over 60%, and were near 90% in both studies. T-cells are the ones that kill cancer and cause Graft vs. Host Disease. During my first study, only 30% of my T-cells were from donor marrow. The number wasn’t horrifically low, but it wasn’t as high as the doctors would like. Three weeks later, the number was up to 50%, which is good. It’s high enough to indicate that the graft is “taking,” not being rejected, but too low for a bad case of Graft vs. Host. The T-cell number should increase as the drugs get tapered off.

I’ve had a couple of allergy attacks in the last few weeks. The cause is unclear, although we are entering high pollen season. None have been nearly as bad as the protein-bar-induced episodes I had earlier. When the transplant stuff is done, I’ll get checked for allergies - it would  be impossible to interpret the test results at this stage. Treating the underlying allergies isn’t possible yet either.

I’ve had a couple of fun visitors lately, most recently my mom. She brought my cat Anastasia with her. We’ve been together, other than hospital stays, my autologous transplant last year, and vacations, continuously for 5 years. Most of you know that I am an animal lover, and that I’m extremely attached to my cats - I’ve missed them terribly. She helped keep me sane while the scan was pending.

2 years ago • 61 notes

Post-Hospital Update

I’ve been out of the hospital for about 10 days now, and I sense it’s time for an update, as a bunch of people I’ve spoken to in the last couple of days were behind the curve.

In the biomedical sense, I am doing very well. I left the hospital the day after I got my brother’s stem cells. He actually had more trouble with the transplant than I did - he got jabbed in a vein and developed a huge bruise. I had no such problems. The only bump in the road so far was an allergy attack the day after I got home. I got up late, and ate a protein bar. About 10 minutes later, I was having trouble breathing, itching like crazy, turning red and covered in hives. My girlfriend was here, and so was my roommate, Ben. They were able to bring me anti-allergy medicine quickly, which was good because my blood pressure dropped precipitously (caused by hives; I could tell because my vision went black for a long time when I stood up) and my lips went numb. I paged my doctor and got a response in under 10 minutes on a weekend - he said:
“That’s weird. Why on Earth are you breaking out in hives?”
It’s nice to have a doctor with a sense of humor. He gave me a rush prescription for steroids, and suggested anti-allergy meds. The whole episode was disconcerting for two reasons. First, I have never had an allergy attack. Since I was diagnosed, I have developed some minor allergies. This isn’t too odd, because people commonly develop new allergies in their mid to late 20’s. Plus, I have an immune system disease, so the treatments basically re-boot the whole mess, and new allergies can crop up. Now I have super-sensitive skin, and two sneezing fits a day. Even so, I’ve never had a full-on allergy attack that looked like anaphylaxis (a potentially fatal allergic reaction). I could live the rest of my life without it happening again, but there’s really no way to know because my immune system is too topsy-turvy right now for allergy tests. So, I have an epi-pen, an “autoinjector” that prevents anaphylactic shock - as my doc wrote the prescription:
“Have you seen Pulp Fiction? Like that.”
When I suggested that if I needed a needle in the heart, I’d let him perform the necessaries, he responded:
“There’s no way I’m doing that.”
Did I say a humorous doctor is “nice?” I meant “a mixed blessing.”

A second upsetting aspect of the allergy attack it represents an overactive/unnecessary immune response. Graft vs. host disease, similarly, is a condition where the transplanted immune system goes after its native counterpart with excessive enthusiasm and causes collateral damage to associated tissues. Many of the symptoms of GVHD are also symptoms of an allergy attack. On my discharge instructions, there are a number of indicators that require an immediate trip to the ER, or a next-day trip to the hospital. Allergy-like symptoms are included on both lists, and GVHD can be fatal (as can anaphylaxis). My doctor’s way of assuring me that it was far too early for me to develop even an acute case of GVHD was by saying “that’s weird” instead of “this happens all the time, come back to the hospital.”

This underscores a broader issue of cancer survivorship. Behavior that would be annoying or pathological in a healthy person is good practice for a cancer survivor, especially a blood cancer patient with a compromised immune system. Constant use of sanitizer, frequent hand-washing, and frequent house-cleaning are all mandatory. So is a more generalized sense of hygienic awareness that borders on OCD - if you touch something, consider where it’s been and the last time it was washed. When you cook, consider what touched what surface or implement and discard, clean or switch as required. Throw things away - tissues only partially used, beverages partially-consumed, leftovers more than 48 hours old, etc. The line between vigilance and paranoia is a hard one to walk.

The same is true for symptoms. The warning signs of GVHD are, as I mentioned, things like hives, a runny nose, indigestion. A normal person sneezes and develops a runny nose and thinks “annoying” not “I wonder if this s how a life-threatening illness starts.” Swollen lymph nodes and fevers happen all the time; they’re part of a normal response to infection. They’re also symptoms of lymphoma. As long as I live, I’ll feel a presentiment of doom when my temperature rises.

For now, my doctors are very happy with my progress. I’m boring them, they say. I say I’ve supplied them with enough entertainment and they should seek novelty elsewhere.

Life these days is pretty sedate. Mundane but mildly stressful challenges accompanied moving into our new apartment earlier than expected. Everything seems to have sorted itself out, and we’re settling in. I’ll be under strict sanitary guidelines for an indeterminate time. These precautions could last as long as 100 days, but will most likely be rolled back gradually as I make progress. For now, I see my doctors for an exam and blood tests Monday, Wednesday and Fridays. They check my blood counts (red/white/platelets), liver and kidneys, and the level of the immunosuppressive drugs in my system. They adjust these to strike a balance between preventing GVHD and rendering me vulnerable to infection. It takes between 90 minutes and 3 hours each time. Next week, we hope to go down to 2 visits/week.

Mostly, I’m under a kind of medical house arrest. When I travel, I have to use private vehicles (no public transportation). While in the cab, I wear sterile rubber gloves and a respirator. I have to wear them in the hospital hallways too, and if I were to go anywhere else (thanks to Ben and my mom, I don’t have to), the same requirements would obtain. Crowds, babies, sick people and enclosed spaces are verboten. I can’t eat raw foods of any kind - no sushi, no salad. I can’t eat raw vegetables, but fruits with thick skins - bananas, melons, etc. or cooked or canned ones are ok. Everything has to be well-cooked. All the prepared food I eat has to be cooked in my home, or produced in a factory. I can only drink bottled water. The good news is that I have enough time to prepare an impressive post-confinement restaurant binge.

Mentally, I have good and bad days. Lack of privacy and mobility are grating if you’re accustomed to both. Last weekend, I missed an important funeral/memorial and I am confident that has put a big dent in my happiness quotient. I’m doing some academic side-projects, and striving to keep busy, but motivation and distraction/focus are problems. I have visitors and good people with me, but I miss my pets terribly. The human-animal bond is a powerful thing. More importantly, I’ve come to expect the company of my furry friends. If I hear a loud noise, I fight the reflex to check who knocked over an insignificant (but expensive) knicknack en route to important (but invisible) feline business. Expectations matter. There’s a scene in The Dark Knight, where The Joker explains to the District Attorney that “[n]obody panics when things go ‘according to plan.’ Even if the plan is horrifying! If, tomorrow, I tell the press that, like, a gang banger will get shot, or a truckload of soldiers will be blown up, nobody panics, because it’s all ‘part of the plan.’ But when I say that one little old mayor will die, well then everyone loses their minds!” If history teaches us one lesson, it is that you should never start a land war in Asia. If it teaches two lessons, the second is that human beings can get used to almost anything. But if you surprise people; deviate from their expectations, the reaction will be swift and significant. Get used to falling asleep with a warm, furry friend and you’ll find that nights when you don’t need to worry about squishing something with claws and teeth are also sleepless ones.

Still, I have many more good days than bad days, thanks to my dedicated support system and appreciation for the little things. I appreciate all the messages of love and support, including the ones I haven’t gotten to answering yet. I’m working my way through the backlog, and very grateful for my friends, mentors and loved ones. Your messages and your company help provide me with distractions, reasons to stay engaged, and things to look forward to. Most of the diversions that keep me occupied were supplied by friends - my Kindle, most of the books I get from Amazon and Borders, my vacation pictures, spot-research requests from my former students, etc. I appreciate the book suggestions from everyone - feel free to keep them coming. You help keep me happy and healthy.

Warm regards from snowy Cambridge.


DS

2 years ago • 17 notes

Update from MGH-Boston

I have had to accept that I simply get too much e-mail to keep up with most of the time, and that mass e-mails and blog posts have to suffice - some of you have sent me really great stuff by e-mail or phone, or sent simple requests that could be easily addressed. My energy level isn’t what it used to be, and I just can’t handle big spurts of correspondence. I promise periodic efforts to catch up, and that I at least read and think about everything that comes to my inbox.

Also, I deliberately separated this update from material related to the death of Prof. Scott Deatherage of Northwestern University and the National Association of Urban Debate Leagues, my teacher, boss, mentor and friend. I have been struggling to reduce my thoughts on the subject to text, in the hope that I can contribute to the public memory of Scott’s life and share some of the burden of grief.

For those of you who never had the pleasure, Scott’s obituary is here:
http://www.suntimes.com/news/obituaries/1962574,CST-NWS-xdeatherage29.article
and the public remembrance page is here:
http://www.facebook.com/?ref=home#/group.php?gid=222352468035&ref=ts

Yesterday I started the pre-transplant conditioning regimen in the isolation rooms at Mass. General Hospital in Boston. These are pretty low doses of drugs that probably won’t make me feel sick or lose my hair. It’s supposed to be pretty boring until Thursday, when I actually get my brother’s bone marrow. After that, they hope to have me out of the hospital in 2-3 days - about 10 days stuck in here. Of course, if complications arise, it could be longer.

The two biggest risks with a bone marrow transplant are infection and graft vs. host disease. Graft vs. host disease is an effort by the grafted bone marrow to attack the healthy cells around them, and the inflammatory response of the body to foreign marrow. If it gets too serious, graft vs. host can destroy the graft, or kill the patient. They use immuno-suppressive drugs to treat it - these create the risk of infection. It’s a medical tightrope-walk and every once in a while, someone falls. The hospital quotes a 10-15% treatment-related mortality rate - probably a bit higher than the reality, they say - and think I am likely to do well.

Before I began this round of treatment I had a PET/CT to check on my progress. After I had the middle lobe of my right lung removed in October, there was no visible Hodgkin’s Disease in my body. The procedures I am undergoing now are based on the scientific certainty that somewhere in me there is drug-resistant “occult disease” that cannot be seen with existing technology. I had two cycles of chemotherapy at Northwestern before I came to Boston again, and the most recent scans were there to confirm that those drugs had a positive effect. If there was any disease visible on the scan, that would have meant that despite the tumor, enough “occult” disease survived to produce visible tumors. Fortunately, the scan was clear. There was no detectable disease, which technically means that I am in remission.This is good news - not decisive news, not ideal news, not game-changing news, but solidly good news.

The goal now is to extend my remission so long that it becomes what most people would call a “cure.” A bone marrow transplant - with my brother as donor - is the procedure most likely to produce that outcome.

The transplant process is underway and the really tricky period will last for the next 6 months. For the first 3 months (or so) I will be under a kind of medical house arrest: no raw foods without peels (lettuce bad, oranges and bananas good), no restaurant food, no imported or cream-based cheeses, no nuts, no crowded places, no visitors with colds, no using public transportation, no taxis without gloves/mask etc. etc. etc. These rules also apply while I am in the hospital, eating their food.

I often lose weight in the hospital simply because the food ranges between “utterly intolerable” and “kind of gross.” I noticed that they always ask about a patient’s appetite, but never if the patient is able to stomach the food. My appetite is great - I just don’t want to eat what they supply. So for the last month I have been stuffing myself with anything and everything I am unable to cook for myself, from buffalo wings to Hawaiian ahi poke (raw tuna). The result, thanks to generous support from my friends the Burkes, was that I gleefully exceeded my previous maximum weight by about 5 pounds.

Right now, my hospital room is pretty busy during the day. My mother is here, finding us an apartment for the outpatient phase. She will be coming and going periodically, balancing the necessity of her presence and culinary skills with the demands of her job. My friend, former debate partner and rival Ben Thorpe will be here constantly as my aide de camp. Ben is here celebrating his birthday today with my brother and our mutual friend Chris. My brother took a week off of his job and business school to come here and donate his stem cells. I’m very lucky that he’s healthy, shares my gender and 10 out of 10 genetic markers that indicate compatible marrow. Plus, he’s apparently forgiven me for a number of childhood “pranks” that a lesser man might use to justify refusing to donate (it hurts a little and Gil hates needles).

Depending on how easily the transplant process goes, I may have enough free time to get some writing or other personal projects done. Once I can travel again (6 months), I will start visiting my friends and extended family abroad. In the meantime, I have lots of Kindle books to read (it’s easier to disinfect a plastic gadget than a book or magazine). More recommendations are always welcome. When the reading material gives out, there’s always video games. And if those don’t satisfy, I suppose that in extremis, I can converse with Ben.

My hospital wardrobe and decor was significantly improved by my recent trip to the Big Island of Hawaii. For one thing, the ideal garment for wear on the Medical Oncology Ward is a short-sleeved button-down shirt. Buttons allow easy access to the Portacath, a just-under-the-skin catheter in my upper left collar-bone area. Short sleeves allow frequent blood pressure measurement and accommodate the relatively balmy indoor temperature. Not coincidentally, aloha shirts are short-sleeved button-downs. I also have lovely pictures of the natural and culinary wonders of the island, my girlfriend and I, and our hosts the Burkes. Thanks to the latter, I have an adequate supply of aloha garments.  I feel better than I have in months, despite the local dearth of cats, dogs, sushi and other sources of happiness. Ten days of sea turtles, whales, good fresh food, sunshine, perfect weather, love and friendship works wonders.

I’ll try to update everyone after the transplant this Thursday.

DS

2 years ago • 0 notes

Ross K. Smith Coach of the Year Award Presentation Speech

This year I was allowed to present the first Ross Kennedy Smith Coach of the Year Award to my college debate coach, Dave Arnett of UC Berkeley. I’ve been asked to post the speech, so here - to the best of my ability to remember and communicate - is what I said.

I have a pre-written speech, which I promise to read. But on my way here, in the plane, at the hospital, a thought kept running through my head. Melissa Wade reminded me of Ross’ disdain for time limits, so I did as I figure Ross would’ve done, and wrote notes on a cocktail napkin. Fortunately, I didn’t let Dave do what he would’ve done to Ross, i.e. spill bourbon on my notes.

[Cocktail napkin]

In the 51 years of Berkeley debate prior to Dave Arnett, we attended the National Debate Tournament 5 times. His first season, we made the elimination rounds [the top 32].  About 18 months later, we won our first national invitational, here at Wake.

I think I first grasped the enormity of the Coach of the Year Award two years after that, when I saw my first college debate mentor, Prof. Scott Deatherage, receive it – years after his teams redefined debate excellence. Seeing his joy and his students’ pride, I felt a little small, and very jealous. I realized that my team was still experiencing growing pains. Coaches who win this award, I realized, have led their squads to maturity. I wondered if we at UC Berkeley collectively, and Dave individually would live to see that Promised Land. Over a half decade later, one thought keeps running through my mind: we’ve arrived. We made it, Coach.

So, I never thought I’d say these words in public, but… I’d like to thank the coaches at Michigan State. Their kindness, generosity and advocacy made my surprise presence here possible.

[Pre-typed Speech]

I want to thank Professors Wade and Louden, and everyone else associated with this ceremony, and the Coach of the Year for allowing me to say a few words here. At the risk of speaking for others, on behalf of Berkeley’s extended family, thank you – from the bottom of our collective heart - for bestowing this honor on our beloved teacher and friend.

When I urged him to provide pro-Berkeley propaganda, Ross said that under Dave’s leadership, Berkeley became: “a blessed exemplar for all who would aspire to debate well and successfully. Every program, extant, or dormant, can say, ‘See, this is what is possible.’ No excuses.” Amen, Ross.

So, that’s what Dave has done.  This speech isn’t about the what. It’s about the how.  Its message, like most difficult things in life, is simple:  Everything I Need to Know I Could’ve Learned from Dave, if Only I Were Paying Attention.

1.  Love What You Do With Your Life, Or Do Something Different, or “You Can Love it or Leave it.” Unlike many great coaches, Dave is first, foremost, and always an argument coach.  As most coaches mature, they expand their responsibilities. Dave hired Greg and demoted himself to focus on what he loves: constructing arguments and teaching students. A Holocaust survivor, Dr. Victor Frankl, wrote that “love is the ultimate and highest goal to which [humans] can aspire.” The worst thing a student can do, in Dave’s mind, is not love their debating while persisting in it.  However they debate, Arnett’s greatest disappointment is a student incapable of loving what they do in his house.

Early in Dave’s career at Cal, he abandoned his initial strategy of loudly threatening to violently dispatch brilliant but lazy debaters. He led by example. His work – its quality, volume and assiduous attention to detail, showed how much he cared. The message was clear: lack of dedication might humiliate you, but you will go down to defeat knowing that your coach will never, ever let you down if he can help it.

Love like that is contagious: students uncowed by anger feared Dave’s disappointment. They began to support their teammates, and began to love the wondrous, ineffable beauty that is a brilliantly-assembled, precisely delivered, victorious argument.  Once they began to love The Activity – in capital letters, for the non-debaters here – it was only a matter of time before they began to love the capital-C Community.

2. Who Dies with the Most Trophies Still Dies, so put Loved Ones First and Everything Else Second. There are many things about Berkeley to shock the mind of a sheltered yet dashingly handsome Jewish kid from the Chicago suburbs – a semi-regular impromptu garbage-can-only drumming circle, and a homeless libertarian who initiates fisticuffs with homeless Marxists with the catchphrase “get a job, dirty hippie!” are but two examples.  But what most surprised me about debating at Cal was the number of people who were nice to me solely because I did it. It was like joining the Illuminati – we had at least one quiet ally on just about every squad. Overnight I literally gained an extended family.  Sara Holbrook promptly noticed my inability to survive in the wild and literally declared herself my Debate Mom.  Our squad refers to our transcendent team-above-teams as West Coast Love - WCL. Anyone who enjoys our company joins our extended family. Ross was an early and fervent WCL member. Having uttered those words I am mortally certain he is up there somewhere composing a sarcastic counter-salvo involving Dave’s pony-tail, District 6, the definition of the word “team,” a couple of you-knows, and something about the limits of geospatial thinking.

Arnett’s only real rule - that is, the only one not determined by federal law or university policy –that his students must work for each other -  is guided by the same belief that makes him the unofficial nexus of WCL: “[Your] value [he wrote to his debaters]… is more than your total wins and losses… the value of participating… should be more than your personal scoreboard. The experience of working for and with your friends… should be cherished. When you’ve finished playing this game it will be those experiences that matter…”

Our debate team is people-centric because Dave quietly urges us to teach each other, to teach anyone who wants to learn. Consequently, nearly every Berkeley debater was taught in high school by an older Golden Bear. Regardless of affiliations, though, Dave believes that we choose to join, and endlessly rejoin, our Community, with the big C – bigger than one in WCL. That fact alone obligates us to care for each other.

3.  Love Requires Respect.  Dave demonstrates on a daily basis that that anything worth doing is easy to do badly, hard to do well, and impossible to do perfectly. He believes that if we respect the unattainable, we must chase perfection and we may stumble into the great. Arnett’s handbook for students says: “hard work makes good debaters great and great debaters transcendent.” He practices, and preaches, the idea that when a person sets out to build a thing, if they respect their craft, their handiwork will bear the unmistakable sign of loving-care.  His passion is teaching students how to seek out information, assemble details into ideas, bundle ideas into arguments, and weave arguments into a living, purposeful tapestry for the mind’s eye; a device for exhibiting strategic human creativity and inducing thought.  Dave is an artist of ideas whose crowning achievement lies in the moment when someone says: “interesting…  I’ve looked at it a thousand times and never seen it that way before.”

Dave isn’t the sort to ruminate about it, but he has profound reverence for the complexity of human affairs, and thus believes that simple answers and thin descriptions are the stuff of weak ideas. If we love debating, our subject matter demands respect; a respect we show with hard work. He urged us to “make hard work a way of life.” If we respect our peers - our opponents, if we respect complex problems, our diligence and loving-care for the knowledge we play with will be obvious when we submit to our colleagues’ judgment.

4. Respect Yourself if You Desire the Respect of Others. When Dave arrived, it was easy for his debaters to resent well-supported debate teams like Wake Forest. Dave refused to let us believe that our small team must have small aspirations. He believed in our potential and never let us forget or understate it to justify failure. When we faced low expectations or disdain, he turned it around: “you’re angry that they don’t take you seriously? Good. Make them. ” It was a twofold trick:

1) In any struggle, to make someone take you seriously, you must demonstrate that, small as you are, you are an opponent to be feared. Once you’ve demonstrated that you’re not to be taken lightly, it becomes an accepted fact, and you would be foolish not to believe it yourself.

2) He made us believe in the magic of debate’s great unwritten rule: performance dictates outcome. Reputation and resources matter, but once the timers start no one is invincible. For those two hours, you are what you do, and nothing else. You are free.

Dave knew that it does not take an army to win a debate tournament, or an army to defeat an army, because size and strength are not synonymous. The nucleus of every successful organization is a surprisingly small number of dedicated workers who aspire to exceed expectations. Those who equate size with power will always be shocked by results, because, to paraphrase Prof. Margaret Mead, small groups of thoughtful citizens are our species’ engine of change.

5. Learn From Those You Would Teach. I watched Dave learn this lesson as his debaters mixed traditional arguments with newer philosophical ones. Dave encouraged me to research ideas I found strange, because it would help me understand and address them, even if I found them silly or hideous. The reason Dave encouraged us to innovate with arguments is rooted in his basic beliefs that ignorance, especially stubborn, willful ignorance, is never – ever – a source of strength. All ideologies that glorify ignorance are supremely dangerous, because the only thing worse than knowledge is its absence.  I have been a coach, and I understand how coaches can forget that we can guide and inform students, but if we force them into preconceived ideological roles, we are losing them, and the gift that new minds bring their elders.  Frank Herbert wrote that the best thinkers “cultivate naiveté” because “thinking you [know] something [is] a sure way to blind yourself.”

Dave never puts on blinders, but once he nearly did. Tejinder Singh, one of the best debaters of the decade, quit our team. Twice. He stopped quitting when Dave stopped trying to make him into something he wasn’t – conventional. He let Tejinder come back on his own terms. In fits and starts, he learned to be the coach his student needed. As Tejinder publicly struggled to make the Activity meaningful for himself, a magical thing happened –after Dave decided to come along for the ride, a good chunk of the Community joined in. The result was an explosion of new ideas and arguments that revolutionized debate.  Everyone paying even a modicum of attention was forced to forget what they thought they knew, reflect on what we do and why, and start from scratch.  We are much wiser for the experience.

6. Never Lose for the Same Reason Twice. One defeat ought to be painful enough to teach you. If it isn’t, you’re not paying attention, or worse, not caring.

7. Give Frequent Congratulatory Hugs, But Always Move the Goalposts After Victory. When I debated, my teammates and I were ranked in the top 4 4 times in a row, which is, by most standards, impressive. Dave’s most frequent comment about my efforts was: “you’re better than this.” He was right, too. It’s not that I lost my last debate – which I did – or that I never won a college championship – which I didn’t – it’s that every debate is a unique opportunity to learn and exceed transcend your limitations, and since there is always more to learn, the process is the prize.

I can assert that Dave’s greatest gift is the ability to impart the love of learning. But I can also prove it statistically: everyone – and I mean everyone - who has debated for him their entire career has gone on to graduate school, and a Cal debater is statistically more likely to attend Harvard Law than any other institution.

8. Defeats are Inevitable. Failure Is Not. Arnett’s orientation guide describes learning argument in a manner eerily similar to what I’ve learned about life from 18 years of school, 13 years of debate, and 2 years of cancer.  “Nothing about this is easy. If it was [simple], [it] wouldn’t be half the game it is. [It] can and should be frustrating at times. The process … entails fits and starts, trial and error, and ultimately a lot of reflection. No one is born… great.”

The process is the prize. In any community of mutual care, how you achieve goals matters as much as what you achieve; win without class, or lose without honor, and you’ve gained nothing and lost the irreplaceable. That is failure.

Speaking of the irreplaceable, I have taken too much time, so I will close with a final Arnett maxim: “Healthy Body, Healthy Mind.” Debate tournaments, Scott Deatherage often said, are marathons, not foot races.  When informed that a marathon is a kind of foot race, Duck waved me off: “same difference,” he said. But Arnett got it right: “a debate tournament is a grueling physical event. Sleep… is critical.” So, good night and best of luck. You’ll need it, especially if you debate Dave’s – and my – and Ross’ – UC-Berkeley Golden Bears.

2 years ago • 129 notes

Update - Biopsy Results

All -
 
[Also posted on my blog: breathingroom.tumblr.com]
 
Apologies for the brief note, and the fact that it has taken so long to get back in touch. Many of you heard from me or from friends about my bad biopsy results, others may have guessed from my silence that I received bad news.
 
The biopsy surgery removed the entire middle lobe of my right lung and a portion of the upper lobe, which previously had been ‘re-sected’ (surgically cut apart) as well. The surgery went very well, and I have healed very well from it. The surgery produced two novel facts: 1) my lungs have grown ‘adhesions,’ that stick them to my ribcage. This sometimes happens with radiation and chemotherapy - it basically means that the healing process accidentally sticks the lung to the chest wall. This might explain some of the chest pains I’ve been having for the last few months. Clearing out some of the adhesions has enabled me to get off steroids. 2) There was a golf-ball sized mass in my lung that was positive for Hodgkin’s Disease.
 
Because it survived my last round of treatment, that makes it drug-resistant, refractory Hodgkin’s Disease. There is no medical consensus on how to treat the disease at this stage, other than with an allogeneic bone marrow transplant. Good news on this front is that my brother is a 10-point (perfect) match. For information on allogeneic BMTs, here is a decent webpage:
http://www.rush.edu/rumc/page-1124115591626.html
 
Right now I am exploring various options - every major cancer center in the country has its own way of doing things, and we are now officially ‘off the map,’ as far as treatments are concerned. Every place I consult has a different clinical trial going on. I will be making a decision about where to go in the next two weeks and will inform you all as appropriate.
 
Lots of people have asked how I am doing. I don’t really know how to answer this question. Imagine if you’d been living with the knowledge that you had a 50% chance of dying from a disease that 85% of people survive. Now imagine finding out that you chances have been (roughly) halved again, and that if the disease repeats its most recent performance (relapses less than 6 months after the transplant), you will certainly die and most likely very quickly. A simpler mental experiment is asking yourself “what would be running through my head if I knew I would most likely live less than 5 more years?” If you can’t think about those things without getting a little depressed, try wrapping your head around the fact that about the only thing you can do besides choosing a good doctor to improve the odds is to avoid a fatalistic, negative attitude and live a healthy, positive lifestyle.

Suffice to say, if you have praised me for being a certain way since I was diagnosed - good-humored, up-beat, rational, intelligent, etc. I have been the opposite of those things for the last two weeks. I also have an extremely large and painful surgical incision, and I think the painkillers do not help with my disposition. I am working on getting back to being myself and figuring out how I want to be for however long this phase lasts. I know I need to find more strength and determination to be a survivor, but right now I feel beaten down. I’m entitled to a little while on my back, I figure, as long as I eventually get back up again.
 
It’s not the first time I’ve been dealt a devastating setback in life, and it won’t be the last, but it’s going to take a while to recover from. Sorry if I have been surly and uncommunicative - it’s not you - you’re all wonderful - it’s me.
 
Hope all is well, thanks to all for prayers and good thoughts.
 
 
DS

2 years ago • 11 notes

Biopsy Today

All -

I apologize for the long gap in updates, and for failing to answer a number of voicemails, e-mails and other electronic communications. A lot has been going on, and my schedule seems likely to get worse before it gets better. I have literally flown from one end of the country to the other four times in the last three weeks, and I am going to be taking a 20-hour train ride on Friday, so you may not hear from me for a while even if everything goes swimmingly.

Most of you know that I was in Boston last week to have heart surgery and a PET/CT scan. The surgery went very well, although it was surprisingly painful. The underlying problem with my heart - Wolf-Parkinson-White Syndrome - has been eliminated. I’m supposed to expect fluttering sensations, sporadic pain and palpitations for a few weeks, but I am off my heart medicines and feeling fine.

The PET/CT is another story. There was a suspicious-looking mass in my right lung before I had my stem cell transplant. In the post-transplant scan, it is still there, slightly larger and slightly brighter. It could be an infection - I have had several infections, and I have been on immune-suppressive drugs for some time. It could also be drug-resistant cancer.

There are three options:
1) Do nothing. Wait until it goes away or gets so active that we can tell it is cancer for sure.
2) Take a partial sample with a needle or a broncoscope (tube down the throat). This is a compromise solution and is minimally invasive. Unfortunately, if the sample turns out to be infected, it only means that the part sampled has an infection. A lymph node can contain infectious material AND cancer, so it doesn’t rule out the latter. If it comes back negative for cancer, it also doesn’t mean there is no cancer - it just means the needle didn’t encounter any. Hodgkin’s Disease cells are very large, and sometimes they slip by the needles.
3) Do an excisional biopsy, cutting the entire mass out of the lung. This approach removes the entire affected chunk of tissue. The downside is that it is a significant surgery - with all the attendant risks - bleeding, infection, collapsed lung, reactions to anesthesia, pain, etc. I’ve already had an identical procedure (in March) and it is pretty painful. It will keep me from flying for a few weeks while my lung heals up (hence the train). The upside is twofold:
a) It is dispositive. Either the sample contains cancer, or it doesn’t.
b) If it is cancer, the majority of the diseased cells detectable on a PET scan will have been removed. This is called cytoreduction. Normally, blood cancers aren’t treated with surgery, but that doesn’t mean surgery is entirely without therapeutic benefits. A given treatment can kill only so many cancer cells. Hence, the less cancer there is to begin with, the better the chances of success. Still, the surgery can’t be considered curative - we have to assume that if there is cancer in this mass, it is elsewhere as well.

If the biopsy turns up Hodgkin’s, then the standard of care is an alllogeneic bone marrow transplant. This means outpatient chemotherapy for three or four months, followed by a transplant similar to the one I had this summer, with three major differences:
a) It would be my brother’s stem cells, not mine and
b) Instead of huge amounts of chemotherapy before the transplant, there is a kinder, gentler chemo regimen before the transplant. It just ‘creates room’ for the new stem cells in the bone marrow. Those drugs aren’t intended to treat cancer. The new bone marrow is the curative agent. The transplant works on the theory that the reason your body isn’t killing the disease is that for whatever reason, your immune system can’t recognize it as a threat. The new bone marrow produces new immune cells that ought to be more capable of recognizing the cancer as a foreign body, then killing it off.
c) When the new stem cells are transplanted, they take a while to ‘engraft,’ and take over the bone marrow. For a while, you have your own bone marrow and someone else’s, simultaneously. Because the new cells are foreign, your body can reject them, like any transplanted organ. You can get either acute or chronic graft vs. host disease. To prevent this, patients are given immune-suppressing anti-rejection drugs. As a result, the recovery period is a lot longer, as is the period of immune-related restrictions. Also, the mortality rate from the procedure itself is higher - 5% compared to 10-15%.

In the event, I will have to choose where to do this therapy. It’s a long and intense process, and my doctors have suggested that I compare my options systematically, and consider both the medical differences between hospitals and the proximity of friends, family, home, etc. The long period of recovery and the engraftment issues means that unlike my previous therapies, I cannot relocate between the treatment and the recovery phases - it should all be done in one place. I have already set up appointments for second and third opinions, and have an eye out for clinical trials as well.

Before getting this news, I had already planned a trip to California. I took it and altered my return destination from Chicag to Boston. I arrived last night. Now I am at Mass General Hospital and I will have surgery this afternoon at 230. It should take about 6-8 hours, and I will try to e-mail tonight or tomorrow, depending on how knocked-about I am feeling. I may also ask my mom to post results to my blog.

Regards to all and thanks for the love and support. Cross fingers, please.

2 years ago • 0 notes

I Miss Ross

The last time I saw Ross in person, I was at the 2007-2008 National Debate Tournament. I was in the middle of chemotherapy. I was bald and green-colored. bumped into him by accident in a hallway outside a room where Wake was debating. We were both waiting on the decision. Ross was outside the door looking in, but when he saw me, he shouted, and came loping down the hallway to hug. When the decision came in, we left together to walk across the campus back to the main assembly area. Like most debate coaches, he knew I had cancer. We’d barely gotten outside when Ross lit his cigarette. At that NDT, most of the smokers walked away from me until I approached them. Others asked permission before lighting up nearby. Ross unhesitatingly chain-smoked as we walked. I guess he must’ve figured that if I had a problem, I’d say something (I would) and I knew what I was getting into when I offered to walk with him (I did).

I really enjoyed that conversation. Ross and I talked about the specific debate we were watching, about the tournament, and about his invovlement in local politics before he insisted on discussing my cancer. I was pretty sick of talking about my health. Somehow, it was a lot easier to chat with him about my tumors while his Camel Light hung precariously between us. I wonder if he knew I was there trying to take my life back from the cancer, and how happy I was that he didn’t alter his behavior to accomodate the disease.

The last time I talked with Ross was by e-mail. I asked him for some help with my speech to the Berkeley Forensics alumni. I asked him and a couple of other coaches to comment on the rebirth of debate at Cal and its significance. I think you can tell a lot about how much he cared for us by his response:

The return of Cal debate to the national scene has been a blessing and a curse.

The Phoenix-like rise from the ashes of whatever Cal debate had been (in the years before the last three decades when I have been in the activity) was a blessed exemplar for all who would aspire to debate well and successfully. Every program, extant, or dormant, can say, “See, this is what is possible.” No excuses.

But Cal’s rise has been a curse for all of those who thought they were ready to get a first-round bid, be the Copeland winner, or win any one of a number of tournaments. Many a school might have reached a milestone in recent years were it not for Cal.

I’m thankful to have heard and known the Cal debaters, that’s a blessing, too. I knew Dave Arnett before the rebirth of the program, that *was* a blessing, but when his teams knoock mine down, I curse.

—Ross Smith

I can’t remember the last time I was kept awake this late dwelling on thoughts human mortality. I feel like that’s an odd thing for a cancer patient to say, but it’s true. I certainly think about suffering, and I’ve dealt with death on a pretty regular basis for the last 2 years. During that time, my life has either been paralyzed by a life-threatening illness, or I’ve been healthy enough to work (on the global war on terror, or whatever-it-is-now) and study (war). Still, my way of dealing with the omnipresence of death hasn’t included much sitting around ruminating about its nature. For me, part of maturing has been learning the kinds of thoughts and ideas that push me onto a dark and unpleasant mental path, and turning away from them as much as possible. One thing I’ve learned from staring at my death - and having a severe atrial fibrillation and breathing through an airway compressed to the size of a soda straw will make you stare - is that thinking about it doesn’t seem to meaningfully prepare you for it. It’s a Thing - the Uknown, the Beyond - and whatever it is, it won’t disclose itself to you until you experience it. It’s a fundamentally unproductive line of inquiry, so why fixate?

Of course, it’s not really possible to live in the world connected to other living creatures and not bump into the trouble with mortality. People and animals get sick, they get hurt, and they sometimes die. No love without loss, and no life without risk, etc. etc. Still, I think there is something different about death - something that distinguishes it from illness and suffering. A few months ago, a teacher and friend I care about very deeply became ill. He was in great pain, and his life was at risk. I was simultaneously going through a medical crisis that ultimately became the return of my cancer, and it seemed that we were sharing a taste of the worst. Still, it rapidly became a long, shared slog, a journey we took the way anyone facing adversity does - with varying quantities of dignity and determination, one foot in front of the other, making steady if slow and painful progress until it resolved itself. Deaths seem more final, more absolute and lonesome.

Since being diagnosed, I have been repeatedly struck by the loneliness of physical pain. When I hurt, no matter how many people love me, rub my back, hold my hands, I still suffer alone - there’s nothing they can do to take my pain away or take some of it upon themselves. Simultaneously, I know they experience a kind of pain I can’t share as they powerlessly watch my discomfort. What we share is, paradoxically, our isolation. Death is like this, only more so, since where suffering can bring the sufferer and others close, death instantaneously sunders us from the dying.

When death is sudden or unexpected, and we have no chance to say goodbyes and conduct our rituals of parting, the sheer speed with which our friends and loved ones are torn away makes loneliness that much more stunning. It is everything about the crisis experience that attends illness or injury, except all the agency, contribution through action is stripped, and all the pain is compressed into a single temporal point instead of drawn out agonizingly. Sadly, I feel much better prepared for crises than sudden losses.

Ross Smith’s death smacks to me of the fantastic, the incredible. Staring at the type on my computer screen confirming his departure from our ranks doesn’t seem to make it any more real. I have never been to a funeral, though I’ve lost a couple of people I care about. I wonder if they help with the sense of unreality. Perhaps nothing but time - continual absence - adds a sense of reality to unforeseen deaths. Just weeks ago, I was talking about Ross’ teaching style with Arnett, my college debate coach. He was giggling and e-mailing me snippets of a debate theory lecture Ross was at that very moment delivering to a group of high school students. It was equal parts brilliant and hilarious, as Ross tended to be. I asked him if the kids could really appreciate Ross’ eccentric lecture style.

Some people reading this may never have met Ross. If so, you missed a truly unique character. He exhibited one of the telltale marks of a brilliant speaker - he was hard to understand, but so smart that pretty much everyone put forth the neccessary effort. Winston Churchill and JFK both had thick accents and curious diction that render listening to them challenging. Both are regarded as towering minds and orators, and hundreds, if not thousands of debaters and coaches held Ross in similarly high regard.

Ross was a tall and gangly man with a deep gravelly voice. Like Churchill, his voice was a product of his vices; he spoke, more often than not with a lit cigarette (a Winston, if memory serves) hanging miraculously from his lower lip and wreathed in smoke. Ross could keep a lit cigarette on his lip while doing a handstand and drinking bourbon. That alone borders on the miraculous. When I smoked, I tried repeatedly to replicate Ross’ hands-free posture. Thankfully, I didn’t ever try to speak that way, as I almost certainly would have lit myself and/or my home on fire. I modestly tried to keep a cigarette hanging while reading or typing. The invariable result was tearful, red-eyed catastrophe.

Ross had a mop of dark hair, and although he cleaned up nicely, in most of my memories I see him with an impressive five o’clock shadow speckled with grey and bags under his eyes. Perhaps I see him that way because we spent so many long three-day weekends competing against each other in blissful mutual exhaustion.

He could make me smile just by talking, and I’m not the only one. In the years after I stopped coaching and attending debate tournaments regularly, I would occasionally stop by a room where Ross was judging. I’d listen to him hold forth and explain his decision, just to hear the sound of his voice, his cadence and banter. He spoke in a melody that the deepest, most primitive, reptilian part of my brain has forever associated with college debate tournaments. Like listening to good music through a single headphone, the next tournament I attend will sound incomplete in his absence.

Chuck Jones, the brilliant Warner Brothers animator once said of Bugs Bunny that “every movement is Bugs and Bugs only, just as is his speech developed from a kind of vaudevilliant patois loaded with ‘deses’ and ‘doses’ to a fully cadenced speech in which he studiously inserts an occasional ‘ain’t’ in the same casual way as an Oxford graduate does.” Similarly, Ross spoke Ross, not English: spare sentences stripped of superfluous words and filler but generously larded with rhetorical questions: “ya’ know?” “m’kay?” and an indescribable grunt combined with a cocked head pushed forward on his neck an an inquisitive angle as if to ask, “you follow?” When he spoke, Ross moved. He had very long arms and legs, which he would stretch at seemingly painful angles behind his head and neck while delivering his lines. Particularly salient points would be delivered with both a simultaneous head-neck forward extension, a sudden, glasses-shifting nod and a sweeping, wingspan-stretching two-armed outward flap, and/or a sudden cock of the head and a loud clap of the hands. Every word and gesture was Ross and Ross only.

You may now appreciate why I asked Arnett if the students could appreciate Ross’ speaking style - one never knows if the uninitiated will be confused, intimidated or fittingly entertained and edified by someone as unique as Ross. These young students clearly knew a gem when they saw one: “whenever he claps, they all clap right back in unison.” Ross was the kind of performer who could appreciate the hilarity of this loving mockery without self-consciousness or explicity acknowledging its existence. He knew he was a character, but just as Bugs occasionally acknowledges the existence of the audience without seeming ingenuine, it was clear that Ross was always playing himself. I may be over-thinking this. I learned a lot about how to stage a speech as spectacle from watching Ross talk, but he might have just ignored the clapping because he was in Berkeley and used to being imitated.

Berkeley students of my generation were slavishly devoted to Ross. This began with long nights in tournament bars and playing poker. A good number of my teammates were excellent poker players, as was Ross. I suspect that Ross believed poker was a good measure of a debater’s intellect, and that as a result he came to respect the Cal debaters’ prowess long before some of his colleagues did. Ross didn’t just hang out with the students, either - he taught constantly, with complete candor and generosity, and universally. The most stubbornly stupid student would get an bottomless earful from Ross if the exhibited even a modicum of interest in what he had to say. He saw no lost causes. I know I learned a lot about debate from cigarette breaks and bar time with Ross. Cal debaters quickly grew to love Ross, and at some point began impersonating him.

At first we did this out of loving mockery. The Berkeley Debate patois was mostly comprised of strings of movie quotes, so quoting Ross-isms was a logical next step. We all learned Ross’ hand gestures, his posture, and his diction. At a certain point, we stopped quoting and started improvising. It’s hard to explain, but there were certain topics that by consensus could only really be discussed when all parties were imitating Ross Smith. I occasionally notice that even after I go months without seeing my old teammates, when we see each other, people slip into their Ross. Possibly the most entertaining aspect of our shared fascination with Ross is that it became a bit like code-switching. Code-switching occurs when a multilingual or multicultural person slips into the accent or language of those around them without thinking. Many of the Cal debaters of my generation were first generation immigrants, and I think they are intuitive code-switchers, like me. When talking to Ross, we sometimes would slip about 50% of the way into our impersonation of him. He never complained about this, to the best of my knowledge.

I did not meet Ross until college. At my first college tournament I was informed that Ross was someone deserving attention and respect. People sometimes forget that the UC Berkeley Golden Bears didn’t have much institutional credibility at the turn of the millennium. A lot of folks didn’t take us seriously. Ross never took anyone too seriously, but he made it clear that he respected us. I have always felt personally indebted to Ross and Al Louden, the head coaches at Wake Forest during my debating. Wake Forest is a historical debate powerhouse - my high school coach did his graduate degree there, as did many of the most prominent coaches. Being accepted and respected by Wake helped me - and I suspect, some other Cal students - come to respect myself.

In the college debate community ‘freshmen’ is a word usually pronounced with a sneer. They’re put through a certain amount of grief as a matter of course because they’re just learning the ropes both socially and competitively. Talented freshmen receive a unique brand of disdain from their older competitors fueled by a mixture of fear and justified aggravation. Generally, the more talented the student, the more arrogant and accustomed to respect he or she is, and the more aggressively negative the reaction from older students and coaches is. I’d already won national championships when I got to college, so I was fairly insufferable. The first adults I met in college who came from a school outside of Berkeley’s unofficial life support system and treated me decently were the Wake coaches.

My first memory of Ross is actually one of the most frequently quoted Ross-isms among Cal debaters. It is telling that what I remember is how Ross stood up for me. At our second tournament my freshman year (e.g., my third college debate experience, lifetime), we had yet to prove ourselves competitively. We were thrilled - and very surprised - to make it to the quarterfinals. There we encountered a team of two well-known and respected seniors. Despite the fact that we had clearly caught them flat-footed, they treated us generally, and me particularly, with disdain. I don’t think Ross was intentionally protective; in retrospect I think he was aggravated after two hours watching a team make losing arguments against a competitor they considered beneath courtesy.

At the time, I basically assumed we would win the debate just because we were technically ahead. These were arguments I wrote, I advanced them in my speeches, and I knew we were winning on the merits. If I were coaching me, I’d have taken this opportunity to disabuse myself of some freshman naivete. It takes a courageous judge to vote against an established and respected team in favor of a team with no reputation. We’d made arguments that many judges dislike for valid, if subjective, intellectual reasons - given the reputation factor and their preferences, most would take the safe route. In my experience, Ross was utterly above such concerns. One of our opponents, infuriated, tried to shout Ross down. He insistently, and increasingly loudly, insisted that he be heard. He then dissected the debate and made it clear that he thought our competitors had been undone, at least in part, by their stubborn arrogance.

Debate coaches are intensely competitive people. Rivalries can become intense, personal and mean. Races for the Copeland Award, which recognizes the best team of the course of a season can become downright ugly. Such races usually are waged between two, or at most three teams. I have seen several such competitions get completely out of hand, and coaches do not always stay above the fray. They care about their students, and care about the award, emotions run high, and suddenly they lose the capacity for civility. Bad blood accumulated in those races can last a long time. Ross was a mentor to me and my teammates. He was also the coach of the team we contended for the Copeland with most closely. Our race came right down the wire; our debates with Wake were exceedingly close and often infuriatingly so. Ross was always - and I mean without fail - friendly and supportive.

Ross was the first college coach to trust me to teach a group of high school students on my own. He also taught me about judging. My first year out of college, I made a very difficult judgment call in a late elimination round. It was a debate that hinged on a subjective matter of opinion, and one of the teams involved was from Wake. The Wake debaters clearly thought they were winning, and there were three judges on the panel. I and another judge voted against them. An older coach who won Judge of the Year a number of times voted for Wake. They were visibly and not unjustifiably upset. A few weeks later, we were at a party when one of the Wake students commented about my decision in that debate. At the time, I’d just been pushed around (physically, publicly and by a girl) and I was in no mood to let the matter lie. I took up the gauntlet and - politely but firmly - justified myself to the increasingly agitated student.

Ross was there. He could’ve stayed out of it, or taken his very upset student’s side. But he gave me the benefit of the doubt, and told the student that I was trying to give him useful information about how I, and possibly some other people who agreed with me, understood debates. He sat there and made sure that I was able to get my point across. Only in retrospect did I understand how wise this was: he was trying to teach his student how to treat judges, and the fundamental lesson that a debater’s job is to adapt arguments to suit the stated preferences of his/her judges. But he also made it clear - without saying anything - that I needed to be consistent in my judgment calls, or I’d permanently lose credibility. A dispute like this between a debater and a judge, if poorly handled, can result in a permanent breach. This student contacted me shortly thereafter to lavishly apologize, and I consider him a friend.

Yesterday I took my first walk in Harvard Square after two months indoors. I’d been confined to a hospital room, and then my apartment. As I walked past the campus, it was hard not to think about how much I wanted to get back to school and teaching. I suspect that I love teaching in part because I’ve been blessed to know so many great teachers, many of them Ross’ students. I set out to visit the Harvard Book Store. I love book stores almost as much as I love libraries. For a month, I couldn’t read books without wearing plastic gloves. Since the gloves make my hands sweat like crazy within a matter of minutes, that meant no printed books (Kindle only). The month after that was also book-deprived, because I couldn’t go into a bookstore without a mask and gloves (thus, no book stores). Finally, yesterday I enjoyed an hour or two of carefree browsing. The book I’d come for was gone, but I found something unexpected and wonderful. If you stay in a book store or a library long enough, you’ll find something new and lovely: one of the most basic and important life lessons I’ve learned. Ross Smith helped keep me around debate long enough to learn it. I don’t know exactly what I was doing when he passed. But soon after I got to the book store, the Leonard Cohen song Hallelujah started playing on the store’s speakers. I’d like to think he left us then, although it’s not terribly likely.

Ross made me feel welcome when very few others would. He taught me when plenty of folks were pretty sure I wasn’t willing to or capable of learning. He made it clear that he respected my opinion when it would’ve been costless and crowd-pleasing to treat me like a particularly stupid and foul-smelling patch of sphagnum moss. I wasn’t ever officially Ross’ student, but I always felt like he was teaching me. The funny thing is, when I think about all the stuff I learned from Ross over the years, I think the most important is what he taught by example. Every time I saw him, it was obvious that he was doing what he loved and that he cared about his chosen profession and the students who shared it with him. His speeches at the Wake Forest tournament awards ceremony were legendary, and like everything else about him, quintessential Ross and only Ross. He did what he loved, and he loved doing it. He was his own man, and drunk or sober, morning noon or night, haggard or well-tailored, he was full of life, ahead of the pack and dragging the rest of us along for the ride. Although he embraced self-improvement and loved the role that debate played in improving his opinions and ideas he was always and first true to himself. He was not a perfect man, but that made him a great one.

I think if I had passed away, Ross would probably have lifted a glass or two of bourbon in my honor, even if he had someone else drink them in his stead. I can’t drink - I take oxycontin, and you’re not supposed to mix alcohol with hilbilly heroin. Cigarettes and radiation to the chest combine to produce lung cancer. I am now a bit paranoid about smoking, and don’t plan to have so much as a celebratory cigar as long as I live. This is obviously not terribly rational. I quit smoking when I stopped professionally coaching debate. The only time my willpower truly slipped just happened to be the week I was diagnosed with cancer (finals, first semester of graduate school). I know the two facts are totally unconnected, but it’s made me a bit gun shy about smoking. Still, I feel a powerful compulsion to order a drink and smoke a cigarette as I say a mental goodbye to Ross. I won’t smoke or drink, but I suspect that were our positions reversed, Ross would. But that’s him, and I’m me. To thine own self be true.

Having searched my e-mail for the messages Ross and I exchanged about debate at Berkeley, I realized that the note above actually isn’t the last one I have from him. The last thing he told me was that he’d been missing me. I miss him too, but I won’t ever forget him.

DS

2 years ago • 2 notes

Stem Cell Transplant Update

This is a copy of an update e-mail I sent out. It presumes that you know my cancer recurred and I’ve been in Boston getting treated at Mass General Hospital. I have almost finished a lengthy summary of everything that’s happened since I last posted here, and will put it up shortly.

All -

Please forgive the mass e-mail. I’ve been meaning both to send out a mass update and get in touch with each of you individually for some time. A lot has been going on, and the fundamental reality is that my desire to communicate and the size of my social network are both greater than my current level of energy and focus can effectively sustain. I sleep through many phone calls, and simply do not have the energy to conduct others. I read all my e-mail, but I occasionally forget to send responses - even to messages that make me smile, laugh and/or cry. I really do appreciate every attempt to get in touch and send good wishes - I just can’t respond to all of them. This is a poor substitute; I apologize again and promise to do my best to get in touch directly and personally as soon as I am able.

I spent most of June in the hospital getting the autologous stem cell transplant - the procedure I came to Boston to undergo. After an extended period of gluttonous over-eating, I finally checked into the Medical Oncology Ward at Mass General. This area takes up about one half of the 14th floor of one building in the MGH complex - the other half is taken up by the maternity ward. Both wards are separated from the rest of the building’s ventilation and heating systems using ‘positive pressure;’ that is, the atmosphere is controlled and vented separately and is slightly pressurized so that air cannot get in from the outside. This protects the patients, who are almost all immuno-compromised to some extent.

I struggled to figure out how to describe the experience, and I decided that to understand it, you need to understand both the routine background noise of being hospitalized and immune-suppressed, and the exceptional moments that punctuated the process.

Routine is an incredibly powerful force - it is part of what makes being hospitalized a confrontation with a social institution, and not just an exceptionally sterile stay in a hotel. Routine shapes and defines the lived experience of hospitalization; you conform to it or rebel against it, but it simply is, and structures the behavior of everyone responsible for your care and maintenance - doctors, nurses, physician’s assistants, janitors, food service personnel, and other specialist players like physical therapists, social workers, and technicians. Because you are not allowed to leave your room, you live a somewhat passive existence; people knock, and you can forbid them to enter (theoretically), but you are constantly in the position of receiving visits; social initiative passes out of your hands.

The most common visitors are nurses. They generally work in 10 or 12 hour shifts, although this varies and sometimes a nurse will only work a half-shift.  Doctors generally do rounds early in the morning and again towards the end of the normal workday (around 5-7) when they finish charting their patients progress for the day. Specialists tend to stop by whenever they have time. In a typical day, a team of doctors would visit me in the early morning (between 7 and 830). That usually included Dr. Chen, my transplanter, and his staff. The team doing the morning rounds belongs to the assigned attending physician. I conveniently happened to receive my transplant when my transplanter was the attending. Interns and residents would also pop in, particularly after my case got interesting. I generally saw between 5 and 10 doctors a day.

Nurses visit at least once every four hours, although generally far more often than that. At least every four hours, they check your vital signs - pulse/oxygen saturation, temperature and blood pressure. They bring you medicine. No matter how stubborn you are about avoiding painkillers or anti-nausea meds, if you get a bone marrow transplant, you will take a lot of medicine - either chemotherapy, or stuff designed to help your body survive it. They maintain your IVs and catheters. That might sound insignificant, but it really isn’t, from a lifestyle perspective.

When you’re hospitalized for a bone marrow transplant, you’re hooked up to an IV pretty much all the time. The only times you’re not hooked up are when you’re going for exercise, showering, just checked in, or are about to check out. Just about everyone who has a bone marrow transplant has a Mediport implanted. Mine was put in a few months ago, and is in my left upper pectoral area. A Mediport, for those of you unfamiliar with the device, is a way to inject medicine into a patient’s central veins without going through peripheral blood vessels (like the tiny ones in your arms where IVs are normally placed). The Mediport is a disc about a half inch thick and about the circumference of a quarter, connected to two tubes that run into a big vein (the jugular, in the neck). The disc is basically a plastic ring with a semi-hard center made of silicone gel. When they want to take blood or administer medicine, they use special hook-shaped needles. Those needles pierce the skin, and enter the gel, and can pump liquid in or out of the tubes. When the needle is removed, the gel closes up the hole, so there’s no leakage. 
During a minor surgery, the port is inserted on top of your chest wall, under the skin and the tubes are inserted into the vein in your neck. There are two incisions. It hurts for a while, and is a minor discomfort for as long as it is there. Imagine having aliens implant a stack of seven or eight quarters into your upper chest, near the collarbone - even if it didn’t hurt, it would be irritating to have it there, and would occasionally get jostled or poked unpleasantly. Congratulations, now you know what it’s like to have a Mediport. 

Nurses are in charge of Mediport business. It has to be regularly flushed with saline and Heparin (a weak anti-coagulant that keeps clots from forming around the tubes) to keep it clean and uncorroded.  If the tubes get covered in clotted blood, it can cause problems (like say, a stroke), so if the port doesn’t flush properly, stronger anti-coagulants are used. If those don’t work, they yank the port out - although that would only happen in an extreme case. A port can stay implanted for years safely, as long as it gets flushed once a month. 
Between 2 and 5 am, a nurse must draw blood from the port for your daily ‘labs’ - a term that refers to the basic blood biochemical data like the patient’s white and red blood cell counts and clotting factors. Blood data is supposed to be interpreted and acted on by doctors performing their morning rounds. For the labs to be up-to-the-minute, they have to be drawn at an obscene hour (rounds start at about 7, and the labs take about 2 hours to process, minimum). To access the port, a curved needle (actually, two curved needles) has to be used - straight needles would cause the silicone gel to split apart. The nurses insert and remove the needles, and some of them are so good at it that you barely feel the pain of being hooked and gored. That’s important since, no matter what, every 7 days the needles have to be changed and swapped out. That means pulling the old ones out, and putting new ones right back in, in more or less the same place. You develop a pretty serious bruise in the vicinity of the Mediport, for obvious reasons. 

A special bandage covers the bits of plastic that keep the needles emplaced and stable, and tubes come out of the bandage, and link the port to the IV tree (the thing where the bags hang and the pumps work). There’s a trick to these bandages - there are two kinds, and one is a lot more expensive than the other. Unfortunately for me, the adhesive on the cheap (hence, default) type of bandage dissolves my skin - eats it away and leaves a bleeding red mark wherever it touches. Nurses noticed this and were responsible for fixing it in a minimally painful but also non-infectious manner.

One thing nurses can’t do is keep you from hurting yourself with the IV tree. You have to sleep, walk, eat and visit the bathroom with tubes connecting you to it - and if you get tangled up, twisted about, or just forget to bring the tree along on a walk and yank the needles out of your chest, it’s on you. Whenever the IV tree finishes injecting you with something, develops a problem, or runs out of battery (did I mention it has to be plugged into the wall to charge?), an alarm goes off. Sometimes, if you’re really unlucky, or you miss the first one, several alarms will go off. You can try to stop the beeping yourself, but will most likely fail. You have to call a nurse to come and fix it.
Calling a nurse requires using a call button that is on a device shaped like a large TV remote. It is, in fact, the remote for your ceiling-mounted TV and adjustable bed. It also has a speaker for the TV that, combined with a microphone, lets you speak to the receptionists. These people sit at the front desk, which is co-located with the nurses’ station, but not the nurses’ lounge and desks. A charitable person would say they are over-worked and under-trained. A meaner person would say that most of the receptionists were newcomers to the floor when I was there and were less than fully competent. Because the receptionists do not identify themselves and are always the intermediary between you and the nurses, you must walk a fine line with them. Any time you call them and suspect they may have failed to relay your message accurately or sufficient speed, you face a dilemma. If you call a second time, you may fix the problem. But you may also antagonize a receptionist who may well have relayed your message perfectly and quickly to a nurse who is currently busy. Antagonizing the receptionist may make them less helpful when you really need something - like say, help getting to the bathroom or an injection to keep you from hurling - stat. 

Nurses help maintain your hygiene regimen, which is a pretty considerable task. During a bone marrow transplant, you must brush your teeth four times a day, and switch toothbrushes every 7 days. During every brushing, you cannot use the sink to clean the brush or wet the toothpaste - a special bottle of sterilized water is used for that. During two of the brushings, you must rinse and gargle with saline solution (salt water) and a prescription mouthwash called Chlorhexidine that burns the inside of your mouth and turns your teeth blue-gray. During the other two, you gargle with saline only. If your platelet count gets below 50,000 (which it does for at least two weeks as a general rule), you have to use a thing called a toothelet. This is a bit of green-colored foam on a stick like a grotesque lollipop. It is gentler on your gums than a toothbrush - if you abrade your gums and start bleeding with a low platelet count, it won’t stop for a long time. 

Every morning, you must shower. You can wash your hair using anything you like, but you must use a specific anti-bacterial soap on your body. Before showering, you must have a plastic bag taped down over your Mediport and the dressing so that it doesn’t get wet (the nurse does this while you try to sit still and avoid getting something sensitive like armpit or chest hair entangled in the tape). When you shower, you must dry yourself with four washcloths and four towels, each of which is for a specific designated zone of your body.

I will not belabor this point, but there is also a routine for bodily waste. This is designed to ensure that you are excreting roughly what you are taking in (in terms of weight and volume). They also test for blood in urine and stool with special CSI-like kits. Also, patients can have serious problems processing the volume of fluids that they are injected with. In fact, during and right after chemotherapy, the doctors intentionally flush your body with about as much water as you can safely process. They pump you full of toxic chemicals, and want to get them out of you as quickly as possible, and they use the IV fluids (water) to do it. During that period (about a week) if you’re not urinating about every 45 minutes, you may have a serious fluid retention problem. Even if you’re used to having your privacy invaded for medical reasons, this part of the experience can get a little tiresome - especially when something happens that makes it impossible to go to the bathroom without help (more on that below).

Meals are an important part of the routine as well. There are three every day, and a menu has to be filled out for each meal in advance. You have choices, but there are no good ones. Hospital food is universally bad. But, the food in the Medical Oncology Ward is a special kind of bad - it is prepared on the floor in a special (and horrible-smelling) cooking area. Transplant patients are on an anti-bacterial diet. In principle, that means you are forbidden to eat or drink anything that was not pasteurized, and thoroughly cooked. Food either must be produced in the ward’s kitchen, or manufactured and sealed under sterile conditions in a factory. Nothing raw - no vegetables or fruits, no nuts, nothing cured or smoked, and no imported dairy products. In practice, you either eat the (awful) hospital food, or ice cream, pudding, packaged sweets, or packaged microwaveable meals or soup.

All this would be aggravating enough if not for the fact that one of the most common side-effects of high-dose chemotherapy is mucositis. This is a rather painful irritation of the mouth and upper digestive tract. Mucositis makes swallowing anything rough, hot, spicy, sour, acidic or crunchy extremely painful. I did not get mouth sores or horrific heartburn, which are common as well, but I did have a lot of pain in my throat and mouth. You all may remember that I was hospitalized in September when my esophagus was too painful for me to eat and drink. That experience did some lasting damage to my throat, so it got pretty sensitive rather early on. Fruit juice, for example, was too acidic for me about a week after I got into the hospital. I had my first post-transplant juice this last week.

After being admitted, I had about 24 hours off. I took some medicine, but nothing major happened. Then the chemotherapy began. I got a cocktail of four drugs, three of which I have never taken before. The fourth was in the ICE cocktail I received as an outpatient here. The drugs were administered twice a day, for between 6 and 8 hours at a stretch. The chemo was accompanied by a cocktail of anti-nausea drugs, steroids, and medicines to protect the filtration organs - kidneys, liver and bladder. It took so long to inject all this stuff, that by my reckoning, I was receiving chemotherapy more often than not during those days. So much medicine entered my body so fast, and accompanied by so much anti-nausea medicine that it really didn’t affect me until about 48 hours after the chemo stopped. That’s when the trouble started.

First there was pain. Sharp pain all up and down my ribcage when I breathed deeply. A dull ache in the center of my chest that never went away, but did sometimes become more intense. Muscle soreness in my shoulders and sides that became agonizing, wrenching pain when I tried to change positions and get more comfortable. Sleeping and eating were impossible. My doctors were confused - since there was no discernible cause for all the pain - but to their credit, they acted anyway. The goal was to “get on top of the pain.” Initially, we were in a defensive and reactive mode; jumping at each new pain and ache with a new dosing or drug. Ideally, the pain would would no longer lead the dance and call the tune.

I have a pretty high tolerance for painkillers, and I don’t get euphoric or hallucinate when I take narcotic medicines. I may be lucky with respect to the latter, since it decreases the likelihood that I will develop a dependency problem. However, my tolerance for the drugs means it takes pretty large doses to help me, especially when the pain is severe. By the time the pain was under control, the brute quantity of the painkillers - especially when combined with the other drugs I had to take - made me extremely loopy. Folks who visited during that time encountered an occasionally semi-conscious and very confused me.

They simultaneously commenced to test me extensively to figure out the cause of the pain. My immune system was just about non-existent, and so allowing me to travel to other areas of the hospital was both risky and unpleasant (I had to wear a respirator, gloves, etc.). For some of the tests, they used special portable machines - a portable chest X-Ray machine was easily the most impressive of these. A day or two (or maybe three - like I said, I was pretty loopy) after the pain began, something approximating an explanation emerged.

Something in the chemotherapy regimen didn’t agree with me and triggered an inflammatory response in my lungs and chest. It’s hard to say what drug or chemical triggered it, or why that particular place was the focal point of my reaction. The cancerous lymph nodes were embedded in my lungs, and several of the drugs I received can impact the lungs and heart - although generally not with inflammation - so it isn’t completely random. The most worrisome problem, so everyone thought, was the risk of pneumonia; the inflammation caused some fluid to accumulate in my lungs and around my heart. 

Seven days after my admission, the pain was pretty well controlled, my bone marrow was pretty well beaten down by the chemotherapy, and I was ready for the transplant. The procedure itself was pretty anti-climactic. There were more doctors in the room than usual, but otherwise, it was just a couple of pink-colored IVs delivered over about six hours. I had been told that it would be a pretty low-key event, and I was warned that the worst likely problem was a reaction to the preservative mixed with the stem cells. The preservative keeps the cells from dying when they freeze and ice crystals form. For some reason, it smells like garlic; the odor sometimes becomes a persistent, foul miasma in the patient’s vicinity for days.

My transplanter explained that the unpleasant part of this for the patient isn’t usually the smell (you get used to it or block it out) but that the way the smell escapes from the body is through respiration. In other words, the chemical is injected into your blood and when the blood runs through your lungs, the preservative comes out of solution and you breathe it out, filling the room with the smell of garlic. Perhaps because he’s never had a transplant himself, I think he failed to explain how this would feel. First of all, the preservative doesn’t smell like garlic exactly. I associate garlic with tasty food, and probably wouldn’t mind its odor too much. It smells like rancid, rotting garlic, or a chemical company’s - badly - failed attempt at imitating garlic’s odor. Second, ‘respirating’ or ‘breathing out’ the odor doesn’t really do justice to the experience. You aren’t breathing in anything unusual. The air is totally normal as it goes into your lungs. But when you exhale, a foul-smelling, rough, smoky-feeling gas passes through your throat - and if you’re really stupid, your nose. The best way I can explain it is to say that it is like exhaling the smoke from an enormous, invisible, garlic-flavored cigarette well past its expiration date, without having inhaled it in the first place. If you can wrap your mind around that description and imagine the invisible cigarette lasting six hours or so, you can understand how bizarrely unpleasant the transplant was.

Everything related to the transplant itself went as expected. My blood counts followed the normal pattern, and my white cell count (which is the best indicator of the transplant ‘taking’) actually rebounded faster than normal. Still, the pain from the inflammation did not go away. I was given a PCA, which is an IV drip that has a device like the clicker attached to a slide projector attached to it. When you push the button, the IV delivers a dose of painkiller, above and beyond the baseline drip. The PCA worked pretty well on my pain, and things seemed to stabilize for a couple of days. They started giving me steroids to counter the inflammation in my chest. With shocking speed, the steroids started to work, the pain began to abate and a small part of me thought I’d turned a corner.

Then one morning, I woke up feeling queasy. Not nauseous, but queasy - sweating for no reason, and feeling like my insides were liquified and sloshing around uncomfortably. Breathing felt… funny. I told the nurse how I was feeling while she checked my vitals (one of the 4-hourly routine checks I mentioned above). When she checked my pulse, she noticed something was wrong. She did an EKG (an electrocardiogram, the thing where they stick electrodes on you and measure the electrical impulses from your heartbeat. Then she called for a doctor. Before I knew it, the room was filled with worried-looking, but briskly competent and disciplined people. This is an unmistakable sign of a pending medical emergency. 
They said there was something wrong with my heart, that I was going to be okay, and I should stay calm. I did the only sensible thing under the circumstances: I laid back on the bed, turned on CNN and ignored everyone who wasn’t asking me a direct question. People have commented on my behavior during this incident and said that I was either brave or insane, and the truth is both less entertaining and simpler. CNN was interesting because of the Iran protests, and I didn’t want to get in the way of all the doctors and nurses doing their jobs. I know from long experience that when I get scared or nervous my heart rate and respiration both become more rapid. 

In situations where I’ve trained msyelf not to register fear - like public speaking - listening to my own heartbeat is one of the ways I check to see if I am feeling nervous. Watching those people get scary-looking implements ready for use on my body would spike my heart rate. Listening to them talk and use words like “arrest” or “fibrilation” - words I really know nothing about except their association with sudden death would do same. I knew I wasn’t doing myself any favors by paying attention to my surroundings, so I went for the first available effective distraction, the TV.

I didn’t totally freak out, but I also knew exactly what went wrong, and that helped. Before I went into the hospital, they did a bunch of tests to make sure that my system was strong enough to undergo the transplant. Much of the work centered on the health of my heart and lungs. While doing these routine tests, they discovered an anomaly in my heart called Wolf Parkinson White Syndrome. You can look it up online if you like, but it basically means that there is an extra nerve pathway linking the chambers of my heart to each other. Human hearts have four chambers, two atria and two ventricles, and the heart pumps in a specific sequence, moving blood from chamber to chamber in the proper order. Nerves in each chamber activate the muscles in sequence. People with Wolf Parkinson White have at least one extra nerve pathway that connects the atria and ventricles improperly, which creates an improper electrical sequence for heartbeats. If the pathway is active at the wrong time, it can force the heart to beat out of sequence, rendering its pumping action ineffective. Problems with the heart’s pumping rhythm are generally lumped under the heading ‘arrythmia.’ Many people have WPW and it is never detected and never affects them. Other people have the anomaly, but the pathway is so small, or so weak that it doesn’t really affect their heartbeat and they do not need to have it fixed. The majority of WPW cases require no action.

In a gesture that he eventually deemed an embarrassment, my medical oncologist reassured me that the WPW was of no great significance before the transplant process started. There’s no way to know for sure what triggered the episode of dangerous arrythmia I experienced, but there is a working theory.

Shortly before my heart went all skittish, the inflammation in my chest started to resolve, but the problem of fluid accumulation continued. Perhaps as a result of these two processes, I developed both an inflammation of the pericardium (the sack that surrounds the heart) and a pericardial rub. That is an audible - with a stethoscope - rubbing sound produced by repeated contact between the sack around the heart with the heart itself. It’s pretty rare, but distinctive - so much so that a bunch of doctors came to listen to my heart so they could hear something they’d read about but never actually heard. For whatever reason, these pressures on my heart exacerbated the latent rhythm problems caused by the WPW. Most of the time, arrhythmic beats are either pretty close to the normal rhythm or self-corrected. But if the arrhythmia is bad enough and its cause is unresolved, it can escalate until the heart can’t get itself in proper sequence. It goes without saying that if that problem isn’t fixed, the patient eventually dies. That’s what started to happen to me.

When my heart began beating out of sequence, everyone knew it was connected to WPW, which meant it was an electrical problem.They feared that what started as atrial fibrillation (quivering of the atria, the upper chambers) would get conducted via the excess pathway to the ventricles, and trigger a fatal ventricular fibrillation (ditto, lower chambers). Everyone seemed to know what needed to be done - the real problem was that all the cardiology equipment and medicine - and the cardiologists - were in another part of the hospital, four floors down. A debate about whether to move me to the equipment and experts or them to me ensued, but I missed it. Stuff was run into my room over the next 15-20 minutes, and I was given a bunch of drugs to normalize and calm my heart.

Once the experts were present, they performed an electrical cardioversion. They calmly explained they were going to use an electrical device to reset the rhythm of my heart. I said, “like, the thing where you yell ‘clear!’ and you shock me?” The doctor said, “no, this isn’t that exciting. Here, take a look.” He gestured towards a machine sitting near him, and held up what looked like a set of salad tongs and said “actually, we’ve already zapped you a couple of times and you didn’t seem to notice.” Truthfully, I was busy watching TV and didn’t notice them positioning the tongs, or the resulting zapping. I also decided everyone was better off if I continued to be ignorant as to the precise timing and nature of the zapping, so I returned to watching television and missed all the subsequent zapping episodes.

After about an hour, most of the drama was over. A lengthy discussion about whether or not to move me to the cardiac floor ensued. That floor had more expert doctors and specialized equipment, but none of the environmental protections to keep me and my compromised immune system safe. Essentially, they were deciding whether to run an increased risk of another heart-related incident or an increased risk of an infection.  When stem cell transplant patients die (about 1% of the time), it’s usually of infection. Ultimately, it was decided that the safest bet was to try the anti-arrhythmia medicines the cardiac people recommended while keeping me on the oncology floor. If things deteriorated, I imagine that decision might have been reconsidered.
There were two immediate consequences to having my heart go sideways on me. First, I had to take medicine for the arrhythmia. I don’t really know why, but one of the medicines triggered a kind of hallucination. First, I would feel like I was having a partial out-of-body experience. Not looking down on myself from the ceiling, more like hanging out on my own shoulder like a pirate’s parrot. Second, I would lose the ability to sense things outside the immediate six or so inches in front of my face.  Third, and occurring at the same time as the weird sensory-deprivation thing, I developed a strong feeling of being crowded. It was a little like developing a very sudden and severe case of claustrophobia. Everything in the immediate vicinity - the food tray, the IV tree, the dresser, the blankets on my bed, seemed extremely cluttered and way too close for comfort. One of the arrhythmia experts asked me about whether I had this reaction and told me it is relatively common, and that some patients find it so bothersome they switch medicines. I certainly would have switched medicines had the reaction not gradually faded over the next couple of weeks.
The second result of the heart problem was that my mobility was dramatically restricted. I had to be connected to a monitoring machine 24/7 (except for showers and trips to the toilet). Aside from the aggravation inherent in being confined by the length of the electrical leads to a circular space with a diameter of about 8 feet, being monitored this way produced a number of unforeseen annoyances. First, the version of the machine that the oncology floor owned was basically a useless piece of crap. Like most monitoring machines, it measured electrical impulses and a small computer inside helped determine if they added up to a normal heartbeat. Of course, none of these machines actually touch the heart. They use electrodes connected to leads that measure impulses in other parts of your body that are linked to your heartbeat. The trouble is that if a machine is poorly designed, the process of aggregating the data from those other impulses into a picture of the heart can get messed up. In this case, the machine was too sensitive. Standing up made it think I was having a heart attack. Typing on the computer made it think I had an irregular rhythm. Ditto urinating. My cell phone interfered with it, as did my Kindle. 
That might not have been too big a problem, if not for the fact that the machine was wired directly to the nurse’s station. In a way, this was comforting, since if I had a heart attack or something, they would immediately see it out there and come running. On the other hand, it was also extremely aggravating for all concerned, since the monitoring machine brought the nurse running about every 15 minutes. Since it did this all day and all night, it was hard for both of us to relax. Eventually they switched me to a slightly better, more modern wireless version of the same machine that malfunctioned slightly less. 
The third aggravating result of being linked to the monitor was that I could not walk to the bathroom without advance permission and planning. 90% of the time, this wasn’t a problem. But occasionally, one or the both of us (me and my nurse) forgot to pre-position the necessary equipment outside the bathroom. Again, this was aggravated by the large quantity of IV fluid I was given. If the fluids were poorly timed and we had not pre-positioned properly and a nurse could not arrive in time with the necessaries, catastrophe could ensue. Numerous innocent beverage containers were befouled in such incidents. 

Before being admitted, I wondered how I would take to temporary virtual imprisonment. To my surprise, I did not mind being confined to a single room for three and a half weeks. Between TV, sleep, the Playstation 3 and a lot of visitors, it was extremely bearable. I also knew it would end fairly soon. Certainly it wasn’t very much fun - but it wasn’t too horrifying. I was pretty astonished, therefore, by how much worse it was to be trapped in the immediate vicinity of my bed/the heart monitor. Being attached to the machine probably reduced my living space by a factor of three or four. You wouldn’t think the difference between 100 square feet and 500 square feet would be so noticeable. I didn’t even really notice how oppressed I felt until they started trying out the wireless monitor and I got a taste of semi-freedom. 
My immune system actually recovered very quickly. I would have gotten to go home early if not for concerns about my heart and the pain in my throat and chest. When I finally did get out of the hospital, I mostly wanted to sleep without being bothered every few hours. If the oncology ward is a prison, the first few weeks at home are definitely house arrest, and not very much fun at all. I also had an infection in my throat the first week and a half, and that caused escalating pain and fevers. I did get off hospital food, but I have been on a restricted diet for the last three weeks. 
Yesterday, 30 days after the transplant, was the first day I was allowed to eat raw fruits and vegetables, go out in public without a mask and gloves, eat in restaurants, etc. In addition to being physically weak and easily exhausted, I experience extreme hot and cold flashes with drenching sweats. All of this is relatively common among stem cell transplant patients and is medically unremarkable, although unpleasant.
As of now, I take medicine to control my arrhythmia. At first, there was no way to know if the medicine was working, and consequently there wasn’t much confidence in my ability to live comfortably and safely indefinitely. A surgery, called an “ablation” was called for - except that with my clotting and immune systems compromised, it would have to wait. This week I saw the cardiac arrhythmia doctors. They did an EKG and found no evidence of Wolf-Parkinson-White on it. That means the medicines are effectively controlling the arrhythmia, and everyone can breathe a sigh of relief. It reduces the need to rush into the surgery, and makes avoiding the surgery entirely a defensible choice. 
Not having the ablation means staying on the medicines for the rest of my life. Over time, the medicines can have some negative side-effects. Plus, they’re not 100% effective, and if the past is prologue, they could fail at the worst possible time. Having the ablation means having surgery, which is never pleasant. It’s done using sedation and a local anesthetic, which means the patient is awake and talking to the doctors the whole time. You aren’t really conscious of pain, but you’re capable of speech, which is odd but useful. 
In any heart surgery there’s the risk of bleeding, or a catastrophic heart failure of some kind, but those are pretty uncommon. This operation also has a pretty low probability of infection, because it is done like an angioplasty. Two incisions are made near the groin, and catheters are inserted into the heart through the inferior vena cava. The catheters are used to map the pathway electrically. My pathway is actually along the middle of my heart, near the septum (the membrane that divides the heart lengthwise). Once its exact location has been determined, the doctors electrically burn the pathway, destroying it and turning it into scar tissue. Ablations have a success rate between 85 and 95%, and when they fail, they’re usually repeated, and the second operation is a success. 
I’m fairly confident that I want to have the surgery, and my oncologist agrees that that’s the right decision. Doing the operation now, while my heart is young and fairly strong, and all I’m doing is medical stuff seems preferable to doing it later. I also want to have the procedure done at MGH, where the head of the cardiac arrhythmia service has been assigned to my case. Wolf-Parkinson-White was actually discovered by an MGH doctor (White), and the arrhythmia service is top-notch. I’m not thrilled at the prospect of being permanently medicated starting in my 20’s, and better here and now than not, so surgery it is.
Some time in the next two months, I will have a PET/CT scan to determine whether or not all the treatment administered at MGH has successfully killed off the cancer. Until then, I am in recovery mode. I’m starting physical and cognitive therapy, and getting ready to leave Boston. There’s not much keeping me here now that the active treatment phase is over. I’ll spend some time with my family in Chicago, and then I might take a vacation before returning to Washington and work. 
My doctors have commented that two aspects of my case are remarkable, and I am 
confident that they are linked. First, my bone marrow recovered faster than normal. For those of you who kind of lost the medical thread, the point of a stem cell transplant is to administer a very large dose of chemotherapy. The dose is so large that it wipes out the patient’s bone marrow, rendering the recipient incapable of producing white blood cells and platelets. The stem cells, which are harvested in advance, essentially ‘reboot’ the bone marrow and the immune system (Hodgkin’s is an immune system disease). I was well ahead of the curve on the recovery side, which means nothing about how effective the procedure was, but is a good sign that I’m a relatively healthy person for a two-time cancer patient. 
Second, my doctors and nurses noticed that I was one of the best-supported patients in the oncology ward. Very few days went by without at least one friend or family member visiting me. Several people came from rather far away. Many brought or sent highly-valued food items and other useful gifts. I often had a number of simultaneous visitors, and the nurses were surprised at how often my cell phone rang. I have spoken to people who felt lonely and abandoned when they were impacted by illness. I struggled to conceal how alien that experience seemed in comparison to mine. I no longer know how to thank people properly; I feel like I am well beyond gratitude with most of you, but you have my thanks in any case. You guys are - collectively and individually - the best. 

DS

2 years ago • 20 notes

An update… Crisis… Resolution

All -

Because I am on some very serious painkillers, it is difficult for me to write. I have pasted an update that my mother e-mailed around to her friends. Soon I will take it down and replace it with a first-person version, but a lot of people have been asking for updates, so here is a third-person version.

“Dear Friends,
There’s a good reason for the saying “it’s not over till it’s over”…  
So it was with Dan - just when we thought the worst was behind us.  After 12 radiation sessions out of a total of 14 prescribed, we had to hospitalize him for severe burn to the esophagus - the cummulative effect of radiation.  The pain was so severe that morphine did not help and the painkiller he got, Dilaudid, was several times stronger.  He was in the hospital for a week, lost 10 lbs., and is still not able to eat even soft foods.  
It was a harrowing time. The pain could not be controlled through regular IV push, so they put him on a pump where he could release the drug every time he felt the pain coming on, in addition to a baseline that was continuously delivered.  He could not speak (it hurt) and the only thing that he could take in was water.  
Dan was released Thursday last week, completed the 2 remaining treatments and is now recuperating at home.  He is very weak, but slowly improving.  The only food he’s able to have is very thin vanilla milk shake that I mix with protein powder, multi-vitamin, and other supplements.  He is on Methadone (they weaned him off of the Dilaudid) which is also an opiate. This will take many weeks, during which time the esophagus will hopefully heal.  We won’t know for another week or so if the last 2 treatments will worsen the situation again.
This child has gone through more torture in 9 months than most people go through in a lifetime!  I have no words to describe how strong he has been through it all, despite the horrible pain and the fog of drugs.  He had the doctors in stitches with the tale of a comedy of errors on the part of the nurses one night, which really was a particularly tough night for him.  I would have fallen apart a long time time ago if he had not been the way he is. “

3 years ago • 0 notes

Medical Update: 3rd Official Opinion, Clarification

I am writing from Penn Station in sunny Baltimore, MD. There is a big art festival here today, and the town is clearly bracing for a massive flood of humanity, but it’s early enough that no one has showed up yet (not even the exhibitors). So here I sit, enjoying the calm before the storm.

Before I go investigate a car shaped like an old-fashioned telephone, I figured I would post a medical update.

Issue 1: Tumor Histology Controversy: when I was first hospitalized, a sample of my tumor was taken through an incision in my neck. The biopsied tissue was analyzed by the pathology lab.

By far the most important question was: is this lymphoma? Even without a microscope it is possible to know that a mass is lymphoma. I know this because I was conscious while they sliced my neck open, and the head surgeon described how to differentiate between teratomas, neck and glandular cancers and lymphoma to a resident, using me as an exemplar. Once “yes/no lymphoma” is resolved, the logical question becomes “which kind of lymphoma” – and there are several: Hodgkin’s, Non-Hodgkin’s, Burkitt’s, B-cell Lymphoma, Mucosa-Associated Lymphoid Tissue (MALT) Lymphoma, and others. It is actually fairly easy to distinguish Hodgkin’s from other types of disease. For decades, scientists knew that Hodgkin’s existed, and knew that radiation and certain kinds of chemicals (based on chemical weapons used in World War I, interestingly) would kill it – but they did not know whether it was a cancer. This is why it is sometimes called Hodgkin’s Disease, rather than Hodgkin’s Lymphoma. Two scientists resolved this by noting that under a microscope, it was possible to see very large, distorted cells that impacted and distorted nearby healthy cells. These abnormally large cells were named after their (independent) discoverers and are called Reed-Sternberg cells. You can see them here:

3 years ago • 0 notes