It has been a long time since I wrote about my ongoing fight against cancer. A lot has happened in several months—many changes, several surprises, lots of ups and downs—and I have a backlog of half-finished posts that I hope to publish eventually. For now though, I wanted to write about one recent development and some interesting medical technology that I encountered because of it.
Last June I tweeted that one of my pupils was much smaller than the other. That medical mystery prompted several scans and tests. Unfortunately one of the scans revealed a small tumor in the back right of my brain. It is still a mystery whether that actually caused the problems with my eye, but it is obviously a(nother) serious problem.
I was strangely unbothered by the news. I already had tumors in my lungs and leg; what was one more when I was already undergoing chemotherapy? The problem is that the brain is protected by the blood-brain barrier that also prevents many chemotherapy drugs from acting on tumors in the brain. Fortunately, radiation therapy provides an alternative treatment for brain tumors, since the brain can withstand a larger dose of radiation than other tissues. My oncologist quickly referred me to a radiation oncologist. Within just two days, I had an appointment scheduled for radiosurgery.
There are several forms of radiosurgery, but all essentially bombard a tumor with a lethal dose of high-energy radiation. It sounds violent, but the treatment is noninvasive, painless, and has few side effects. The radiation oncologist recommended a particular technique/machine/brand called Novalis that is similar to the more widely-known (or at least better-marketed) Gamma Knife.
To hold the patient's head absolutely still and to calibrate the machine, it is necessary to brace the patient's head with a custom-molded plastic mask. The mask is made out of thermoform plastic mesh that is bolted directly to the table. Forming the mask was the most interesting part of a long day in the hospital.
The mask started at the back of the head. The technician laid a piece of the plastic mesh across a bracket, forming a headrest.
Next, two strips passed across the forehead and below the nose. Biting down on a small tab kept the upper jaw in place.
The strips formed the foundation for the mesh body of the mask.
The technicians heated all of the plastic pieces in a steaming vat of water. It started out transparent, malleable, and uncomfortably hot, but quickly cooled, solidified, and turned opaque.
With the mesh solidly in place, the technicians marked key points for calibration. During the treatment itself, they attached small infrared beacons (which looked like glossy silver marbles) to the calibration points, allowing the machine to precisely determine the location of the tumor.
The completed mask looked like a crocheted statue head and fit like a clamshell.
It took several hours for the radiation oncologist and technicians to plan the treatment itself. They combined two earlier scans with the new calibration points to calculate the precise path of the machine. When they finished, the treatment took just 20 minutes. I simply laid on the table, the technicians reattached the mask, and the machine made ominous buzzing noises. A followup appointment in a month should show whether the treatment was effective.
It is hard to believe that it has been two years since I got my first permanent prosthesis. In that time, my leg has shrunk considerably, and I have gone through two other temporary legs. The size difference is remarkable.
The animation above shows my most recent PET scan. See the bright yellow sparkles in the pair of otherwise dark areas above the center of the image? Those are the tumors in my lungs. Some appeared since the last set of scans; others are metabolizing more, and thus showing up brighter. For comparison, the left image below is from last November, and the right is from this most recent scan.
These are not good results. Obviously, the chemotherapy has not prevented tumor growth. Medical literature would say I have reached the regimen's "time to progression", that is, the point after starting treatments at which the disease advances or reappears. Despite the provocative title of this post, that does not necessarily mean that the chemotherapy has stopped working; it just means it is time to try something else.
Unfortunately, my options have become much more limited over the past year. By last March, I had long passed the maximum lifetime dosage of one drug (ifosfamide). Last July, side effects prompted my oncologists to remove another (docetaxel) from my treatments. These latest results show that the remaining drug (gemcitabine) alone has not been effective.
My oncologist searched through the medical literature for other treatments. There is not much, since I have already tried almost everything, and the pool of patients with recurrent, metastatic osteosarcoma is so small as to limit the number of clinical trials for new drugs. Nevertheless, he found one clinical case study in which a combination of gemcitabine and a drug called irinotecan most often used to treat colon cancer was beneficial in a case very similar to mine.
The combination of gemcitabine and irinotecan has
shown acceptable toxicity and synergistic activity against
many refractory solid tumors. Our case report demonstrates
an excellent clinical and radiographic response
in a heavily pretreated patient with recurrent osteogenic
sarcoma...Due to the absence of a radiographic response
to gemcitabine and irinotecan used as single agents, we
think that synergism between the 2 drugs makes their
So far I have undergone one cycle of treatments with this new pair of drugs. Time will tell if it will work for me.
But truthfully, while I remain optimistic, I don't expect to find the silver bullet. At best, this new regimen will most likely just stabilize tumor growth, and the prospects of experimental treatments or more drastic alternatives like surgery or radiation are not much better. That makes, "try something else and see if it works," an unsatisfying answer to the question posed in the title of this post, but it is the only answer I have for now.
When discussing most medications, doctors usually list expected benefits first, then possible side effects. For chemotherapy drugs, the discussion is reversed: first doctors list expected side effects, then possible benefits. Each drug has its own unique side effect "signature" and regimen of secondary drugs with their own set of side effects. I have already written about hair loss and strange dreams. I recently experienced a new unexpected side effect: something caused my right leg to swell like an overstuffed sausage.
It is a frustratingly inexplicable side effect. It occurs after the Docetaxel treatments I have gotten every third week for the last few months. The drug's documentation says it occurs "in rare cases" but the root cause is not well known. I got a series of tests to rule out particularly bad possibilities like poor circulation, a blood clot, or problems with my lymphatic system. My surgeon says it does not appear to be related to surgery. That makes it just another random, mildly annoying side effect of chemotherapy. It didn't hurt; I just had to tie my shoe more loosely.
But what to do about it? The doctor prescribed some medication to reduce the swelling. It seems to be working. In the six days between treatments, I lost nine pounds, all from the leg! Of course, the medicine has its own set of side effects. Fatigue, in particular, but that goes away when I take another pill (for unrelated reasons) whose side effects include insomnia.
To test whether the swelling is really caused by the Docetaxel, the doctor omitted it from this week's treatment. She is still deciding whether to reduce the dosage, spread it out, or leave it unchanged. In any case, I am more than happy to accept a sausage leg if the drug takes care of the cancer.
Chemotherapy causes hair loss by damaging fast-growing cells in the hair follicles. I lost the hair on my head very quickly after my first treatment back in September. My eyebrows and eyelashes followed midwinter. I joked with friends that I was constantly surprised throughout the day, but they would never know since I lacked eyebrows.
Some of the hair has returned since switching to a new set of drugs. Still no eyebrows, though, and the hair on my head is thin and patchy like a poorly-watered lawn. There is also a strange dark blotch of "normal" hair on the back of my head that a colleague said looked like the start of a Hare Krishna topknot.
Weird, but no big deal. Baldness is a normal side-effect of chemotherapy, and I will likely keep my head shaved until I finish treatments.
It is a time of transition in my cancer treatments. I recently turned 25, which meant I would no longer be automatically covered under my parents' health insurance. Around the same time I learned that the hospital would not renew my oncologist's contract despite his unmatched expertise and long history with my particular case. On top of that, I have reached the end of Ifosfamide chemotherapy treatments and will be switching to a different cocktail of drugs. So my insurance, doctor, and treatments are all changing at the same time.
I was fortunate that prior to turning 25, my job as a full-time graduate student qualified me for coverage under my parents' health insurance. It was much more extensive than UIUC's minimal student health plans, and having two insured parents gave me both primary and secondary insurance. Many boring financial considerations prompted me to continue one of the plans with COBRA. Transitioning to COBRA has required navigating innumerable phone trees and poorly-designed websites. One event aptly illustrates how the tangled corporate bureaucracy seems to have engineered the transition for maximum difficulty.
My father called one of the insurance companies to get the COBRA transition forms. They directed him to a third-party company that handles COBRA administration. After another call, that company sent several papers, one of which had two check boxes: "Continue coverage on COBRA" or "Change coverage". Seemed simple enough. To ensure that the coverage started on time, my father called the administration company again to ask if there was a way to expedite the process. A representative led him to a website, but it only contained a PDF of the forms we already had. Dad called again. This time another representative gave him an email address to which he could email a scan of the form. But what about the enrollment fee? For that the representative pointed him to yet another website. There, my father learned that one cannot sign up for the online payment system without having already made a payment.
In the end, we just sent the paper form and a check. Today my COBRA enrollment finally showed up on the account website, but it could take another 30 days for the insurance company to reinstate coverage. Fortunately, it will retroactively cover any expenses accrued over that time, so I am still officially insured.
Enrolling for COBRA may have been comically difficult, but at least we expected my 25th birthday and the corresponding change in insurance. The change in doctors came as a complete surprise.
Two treatment rounds ago, I was laying in my hospital bed when my oncologist Dr. H came in and said he had some bad news: the hospital would not be renewing his contract at the end of the month. I was slightly woozy from the drugs, so it took me a day for the news to sink in fully. That was terrible news! Dr. H has been my oncologist since my first diagnosis in 1999. Since then, I have continually been amazed at his clinical expertise and superb bedside manner. He always explained not just the side effects of treatment, but also the science behind a drug's effect on the body. He also always spent as much time as needed with me and my family, discussing treatment options or just personal news. Several years ago, between my second and third diagnoses, he started an oncology clinic at a different hospital. When he moved to the clinic, many other patients, several nurses, and I followed him there.
From these personal impressions and everything I have heard from the nurses and other patients, there is no way the hospital could let Dr. H's contract expire due to any question of his competence. Rather, from what little I have been able to learn, it was due to corporate politics and reorganization pressure from hospital administrators. The clinic Dr. H started is still running, but it will now be staffed by a rotating group of oncologists from another nearby hospital. Many of the nurses who have cared for me for years remain but fear for their jobs. I fear that the clinic will lose much of the individualized care that Dr. H brought to it.
Last week I met with Dr. H for the last time. It was an emotional meeting. After thanking him for his many years of care, my family spoke with him about the future of my treatment.
The week before I had my final Ifosfamide chemotherapy treatment. That made six, much more than we had initially expected and far beyond the recommended lifetime total dosage. Like the last two-round rotation, I also had a PET scan to assess drug's effectiveness. The lung tumors appear stable, perhaps slightly "dimmer", but two new spots have appeared in my leg adjacent to the scar from my femur replacement surgery. Their appearance is disappointing, but not particularly surprising since there is always a risk with tumor surgery that cancer cells will escape removal. So I have reached diminishing returns with Ifosfamide and two new tumors have appeared. It makes sense to switch chemotherapy drugs. Fortunately, this was always the plan, so the latest scans simply confirmed that now is the correct time.
Dr. H laid out the new treatment plan. To quote the documentation (with links and notes added):
Gemcitabine [also known as Gemzar] will be administered over 90 minutes by intravenous infusion. One week later, the dose will be repeated and a second drug Docetaxel [also known as Taxotere] will also be given to you by intravenous infusion over one [additional] hour. Each treatment will be given in the clinic or hospital, and will be repeated every 21 days, provided you have recovered from any side effects from the previous dose.
Just three hours out of 21 days! That means I do not have to spend days in the hospital! Instead, I can just go to the clinic, get hooked up to an IV, and leave a bit over an hour later. Most people seem to handle Gemcitabine and Docetaxel without many side effects. I had the first treatment today, and the only side effect I noticed was fatigue. After a long nap, I ate lunch without feeling any nausea whatsoever. There are also many reassuring anecdotal stories of the drugs' effectiveness. I will eventually get more scans to see if they are effective in my case.
Despite all of these changes, I am optimistic about the direction of treatments. COBRA coverage will last three more years, at which time I expect to have graduated and started full-time work. Dr. H hopes to open another clinic somewhere around the country, so he will rejoin the national network of oncologists that my new doctors can access. Finally, the new drugs eat up much less time, allowing me to regain some of my life.
While the rest of me has contended with chemo treatments, my right leg has continued to recover from surgery. I have been using a single crutch since before Christmas and can walk short distances without even that. My knee has also become flexible enough that I can finally operate the pedals in my car. On Monday I drove for the first time in three months. I used my newfound freedom for a completely mundane task: I took some letters to the post office.
In a miracle of scheduling, my Christmas was free of medical appointments. I finished my fourth round of chemotherapy a week before the holiday and got a third PET scan a week after. Today I spoke with my oncologist about what the scan results mean for my treatments over the next few months.
The scans show nine tumors ranging in size from 2 to 15 mm. They have remained mostly unchanged since the previous scan. I am disappointed that they did not decrease in size or number, but it is still a positive result meaning that the chemo has prevented growth. I have also avoided the most drastic side effects of the chemo (despite having long passed the recommended lifetime total dosage), so my oncologist feels that I can continue the same regimen for two more rounds.
I expect that the next two rounds will progress similarly to the previous four. The most recent is representative: I get admitted on a Monday and get five, four-hour doses of Ifosfamide (with Mesna to protect my kidneys and bladder) over five days. I feel mostly normal for the first two days, but the drugs begin to take their toll on the third. After that, food loses all its appeal, I shake uncontrollably, and my dreams become very, very strange. I go home on the fifth or sixth day, then spend two weeks recovering before the cycle starts again.
The dreams are the most unexpected side effect. I experienced nothing similar in my previous diagnoses, and my oncologist is surprised that I have such a vivid neurological reaction to drugs that normally have little affect on the brain. Here are three noteworthy examples:
I attempted to design and solve a crossword puzzle wrapped on the surface of a cube. Such a puzzle requires special placement of the black boxes to prevent words from cycling all the way around four faces. Also, there would be no "across" and "down" since each face would have its own independent orientation. I overcame these limitations in the dream, but I can't remember how. One day I will attempt to recreate such a puzzle.
I was flying through a cave with glowing green and blue walls. A small stream of water flowed among the rocks at the bottom of the cave. Its banks were lined with all sorts of trinkets: candles, broken board games, firecrackers, and half-eaten birthday cakes. Pieces would break off these items and melt into drops of oil that would float and merge on top of the water. Inside each drop was a person telling me his or her life story.
An artificial intelligence that directed the crosshairs in an aim-and-fire computer game somehow escaped and created a body from twisted strands of shiny red fiber. Infinitely deformable and with perfect aim, she could build nearly anything out of things she found lying around the towering neon and glass cityscape in which she found herself. These talents eventually destroyed her. She unraveled when she attempted to use her own fibers to make copies of herself. The "children" she created, however, lived on.
I could fill several books with the strange stories from less well-remembered dreams. They all seem to have deep, interwoven subplots and casts of thousands. Fortunately, the dreams and most of the acute side effects of chemo decrease two or three days after returning home from the hospital.
Today I got another PET scan to assess the effectiveness of the previous two chemotherapy treatments. The results look reassuring. I have not yet heard the official word from the radiologist, but it is obvious even to my unprofessional eye that chemo has had an effect. The major tumor in my right lung is no longer visible, and the other smaller tumors have decreased in brightness.
The pictures below show the scans from the initial diagnosis on the left alongside today's scans on the right.
These results mean that I will likely stay with the same set of chemo drugs for one or two more rounds. After that, I will probably get another scan, then switch to some alternate drugs for as long as it takes for the tumors to disappear.
A lot has happened since I last wrote about my most recent cancer diagnosis. I won't go into the grisly details, but a complex sequence of events led to more leg surgery. It was necessary to replace my entire right femur from the knee to the hip. Over half of my right leg is metal now! While lying in the staging room before surgery, I told my surgeon that I hoped this was the last part he'd have to take out of me.
They successfully removed the tumor in my leg. Fortunately, the bony portion was almost completely dead after just one chemo treatment. That makes me confident that the other tumors in my lungs are similarly affected.
Recovery has been difficult but remarkably quick. I am regaining motion and strength every day, can already put my full weight on the leg, and am getting around well with crutches. The downside of a quick recovery is that the doctors were eager to start chemo again. I started the second round of high-dose ifosfamide last week. It hit me pretty hard—I slept through most of the week—but I'm home now and feeling pretty good.
One week ago I finished the first chemotherapy treatment for my most recent cancer diagnosis. But this post is not about that. Knowing that I would be going into the hospital, I took the preceding week off, spent a day in Chicago, flew to Salt Lake City, then went on a long car trip through four western states, Yellowstone National Park, Grand Teton National Park, and several national forests. I saw some beautiful countryside and got to reconnect with my old friend Charlie.
I got the idea for the trip soon after the initial diagnosis. I was eating dinner with my family, and my father asked, "what would you like to do before you start treatments?" My thoughts returned to my cross-country trips to and from California. I greatly enjoyed these trips because they allowed me to be alone with my thoughts and pass through part of the country that I had never seen before. The trips also showed me how much I had left to see. Who knows when or if I would get another chance.
For this trip, I wanted to go on walkabout again and spend time in some of the national parks that I had been forced to bypass. I decided to fly into Salt Lake City and drive from there to Yellowstone. I left the rest of the week largely undefined. This open plan proved beneficial; it left time to take scenic back roads and do several things that I could have never expected.
I booked tickets just three days in advance. Three events coincided to make the trip much easier. First, a group of friends and I had already made plans to visit Chicago the day before my flight, so I was able to fly direct from O'Hare Airport. Second, Charlie and his family live in Big Sky, Montana, just north of Yellowstone. Despite such short notice, they eagerly agreed to let me stay with them for a few nights, removing the need to find a hotel. Finally, I arrived at the end of the summer tourist season, so I found superb weather, early fall colors, and minimal crowds everywhere I went.
And so, on Saturday, September 20, I began my week-long western vacation.
St. Louis is traditionally seen as the gateway to the west, but my trip began in Chicago. Alejandro's girlfriend Alejandra was visiting, so the two of them, Josh, Lucas, and I traveled to several of Chicago's traditional tourist sites. I am ashamed that this was only the second time I have been to downtown Chicago since becoming a UIUC student. Fortunately, I got to see a lot of what I missed last time. We had a full day, including a Segway tour of the waterfront, deep-dish pizza for lunch, the Art Institute of Chicago, Navy Pier, and a trendy Thai restaurant for dinner.
I could say more about Chicago, but this post is about my trip west. I posted pictures in the gallery. Alejandra posted her pictures on Facebook. At the end of the day, the group dropped me off at a hotel near O'Hare Airport, and I flew to Salt Lake City the next afternoon.
Day One and Two: Drive from Salt Lake City to Big Sky, Montana
I woke at dawn so I could use every minute of sunlight for the drive. To my surprise, I found not sunlight, but deep gray rain clouds. The attendant at the visitor center in Logan said it was the first rain in a long time.
Near Brigham City, I entered Cache National Forest, the first of several national forests that I would pass through over the course of the week. Almost immediately, the road was surrounded by vibrant foliage contrasting with the gray cliffs and clouds. The rain only made the colors more vivid. Periodically, the cliffs would open up, revealing a sprawling basin lined with stands of pine and bright yellow birch.
The clouds began to part when I reached Bear Lake on the Utah-Idaho border. I stopped at a vista point overlooking the valley and was amazed at the surreal aqua color of the water. According to one of the information placards, it is caused by limestone leaching from the surrounding mountains.
Like my previous cross-country road trips, I was amazed at how quickly the landscape changed. I crossed several cultivated valleys in Wyoming and Idaho in which one side of the road looked up to a rocky hillside sprinkled with shrubs and pine trees and the other over a sweeping panorama of golden wheat fields. Several times I stopped, walked away from the car, and stood listening to the quiet hissing of the wind over the rolling hills. It made a different sound than the wind through Illinois' corn and soybean fields.
I never saw much vehicle traffic, but I was forced onto gravel farm roads near Ashton, Idaho ("Worlds Largest Seed-Producing Area") due to what appeared to be an alfalfa spill.
Soon after, I avoided bovine traffic plodding slowly down the road.
The wheat fields returned to pine forests as I rose into the Greater Yellowstone region. The road crossed into Montana, then jogged in and out of Yellowstone and Wyoming. This stretch, lined with rock outcropping that reminded me of aged faces, was Charlie's daily commute.
I almost missed Big Sky. My GPS did not know it was a city because, I would later learn, there were ongoing incorporation disputes related to liquor licenses. Fortunately, as Charlie told me on the phone, "there's not much to Big Sky", and I was able to find the appropriate street by zooming in as close as possible. After about 11 hours of driving, I pulled into Charlie's driveway at sunset.
Yellowstone is spectacular. Since returning home, I have been telling my friends to do whatever they can to visit. After my father saw the pictures, he said succinctly, "that looks a lot like my happy place."
The park is famous for its geological features, and the loop took Charlie and me past many otherworldly thermal basins.
My favorites were the paint pots. The bubbles in the thick liquid were fascinating to watch and made entertaining burbling noises.
The bacterial mats and mineral deposits surrounding the geysers and hot springs exhibited deep fractal complexity and were just as interesting to examine at as the thermal features themselves.
Charlie and I stopped for lunch at a restaurant near Old Faithful. Unknown to us, we were eating during an eruption. When we passed the next day, we would have had to wait another hour. We finally saw Old Faithful's famous plume on day five while returning from Jackson, Wyoming.
Old Faithful, like the other thermal features we saw, was surrounded by a raised boardwalk. These boardwalks and the amount of driving made Yellowstone much different from most other nature parks that I have been to in which the best attractions are visible only to hikers on backcountry trails. In Yellowstone, I was amazed how easy it was to simply drive, park, and walk a hundred paces to a natural wonder of the world. Is this good or bad? On one hand I was dismayed to see a miniature freeway overpass leading to Old Faithful. On the other, I am thankful that so many people—including the old, young, and handicapped— are able to experience Yellowstone. I, for one, feel fortunate that I could see so much so quickly, even though it only accounts for a small sliver of the park's total area.
The wildlife, at least, lacked boardwalks. We saw mostly Bison and Elk, often standing in a far-off meadow. The closest we came to Yellowstone's fauna was when we rounded a turn and saw several Bison slowly walking down the road.
The highlight of the day's trip came near the end of the loop when we stopped at the Grand Canyon of the Yellowstone. It was then that the inspiration for the park's name became apparent.
There are more pictures of the canyon and the rest of the park in the gallery.
Day Four: Grand Teton and Jackson, Wyoming
On day four, I had originally expected to drive alone through Grand Teton National Park and spend the night in Jackson, Wyoming. From there, I would circle back to Salt Lake City via Flaming Gorge National Recreation Area and Dinosaur National Monument. However, Charlie also wanted to see Grand Teton and Jackson, so we devised an alternate plan in which both of us would go to Jackson and return to Big Sky the following day. This plan worked especially well since I would then be in town for Charlie's birthday party. I didn't know it at the time, but it would also prove fortunate that I had someone with which to enjoy Jackson's night life.
One of the guide books—I can't find it now, so I'm paraphrasing—accurately described Grand Teton National Park as "providing many angles and vistas from which to view the mountains of the Teton Range". And what angles and vistas they are! The park doesn't have the thermal features of Yellowstone, but that hardly seems to matter. The views of the Tetons are noteworthy in that the mountains lack foothills and instead shoot up from relatively flat surrounding land.
As for the vistas, Signal Mountain, overlooking the Snake River from 7,593 feet, was one of the most impressive of the entire trip. I had my binoculars with me and must have spent 30 minutes surveying the miles of breathtaking landscape.
Charlie and I got a closer look at some of the park when we took several short hikes at various points along the banks of Jackson Lake. At one, Charlie decided to chase a flock of geese.
At another, I left a small cairn at the trailhead.
It seemed like no time at all before we reached the park's southern entrance and Jackson. You can find more pictures of the park in the gallery.
Jackson, Wyoming is an unapologetically goofy western-themed tourist town. Western outfitters, taxidermists, and souvenir stores line the main square. The park inside the square has four arches made of discarded elk antlers. Unfortunately, I do not have pictures of the town since I left my camera at the hotel.
Inspired by the wildlife in Yellowstone, Charlie and I wanted bison burgers for dinner. We expected they would be easy to find in a town like Jackson. We were wrong. The receptionist at our hotel suggested a restaurant that was split down the middle: one side was a sit-down steakhouse and the other was a short order diner. Neither side had bison burgers. The next place we found was much fancier, but while it had elk steaks ($35), it lacked bison burgers. Finally, we found a family-style grill with bison on the menu. I told Charlie, "food tastes better when you hunt for it."
After dinner, Charlie and I went to the Million Dollar Cowboy Bar. Like the town itself, the bar flaunted its western theme with a wonderful lack of subtlety. The wood-paneled walls supported display cases containing Winchester rifles and Native American artifacts. Charlie and I got a table next to stuffed mountain lion. A lanky singer who sounded like Weird Al with a southern accent led a country-western band on the main stage. It was entertaining, but Charlie and I eventually decided it wasn't our scene. Fortunately, I had picked up a local paper at the front door and read that a nearby coffeehouse was having an open mic night.
The laidback open mic night could not have been more different than the over-the-top Cowboy Bar. When we arrived, there were maybe eight people in the dimly-lit coffeehouse. One was singing and strumming a guitar in the corner of the room, while another in the audience provided rhythm with a small djembe drum. None had cowboy hats or boots. The singer completed several songs, then asked if anyone else wanted to play. When no one replied, Charlie stood up.
Charlie regularly plays shows around Big Sky, so he essentially had a set list prepared. The small audience was surprised, I think, to see how well Charlie played, having just walked in from the street. At one point, he had everyone laughing at an improvised song about the cowboy bar.
I, too, got a chance to play. The crowd was very receptive, but my guitar-only songs did not captivate them like Charlie's singing had.
After we left, Charlie and I reflected on how fortunate it was that I had noticed the event in the paper. Who knows how different the evening would have been otherwise?
Day Five and Six: Charlie's Birthday, a Horse Ride, and Return to Salt Lake City
Charlie bartends at a tourist ranch near Yellowstone. On the evening of the fifth day, after returning from Jackson, I helped the colorful staff of the ranch celebrate Charlie's birthday. During the party, a discussion with the stable master—who I managed to beat at pool—led to Charlie and me join a group of other visitors on a horseback ride the next morning. Unfortunately, I did not get pictures of that trip, either, but Charlie's friend Claire sent one of her pictures of the three of us in a mountain meadow. I was left amazed not only at the scenery but at how well the horses navigated the rocky trails. Neither a person nor an ATV could have made it up the steep and rugged ravines that we followed. I am convinced that horses provide the best way to see the backcountry and hope I get a chance to ride again (with a camera, of course).
On two occasions my fake leg surprised the guide. The first occurred when I mounted the horse at the stable. The guide adjusted the position of my leg in the stirrup and noticed that it didn't move normally. Later, when we were an hour into the ride, I noticed the toe of my left leg was pointed 90° to the right. The stirrup had pressed the release button without my knowledge. I called out, "I need to stop. My leg fell off." After reattaching the leg, I removed the release button, and the rest of the ride passed without incident.
The horseback ride occurred early enough in the morning that I was able to return to Salt Lake City by sunset. I said goodbye to Charlie and his family, thanked them profusely for their hospitality, and set off down the interstate.
The drive was less scenic than the back roads I had taken driving north, but I did get to see some volcanic flows and and the back side of the Teton Range.
Cancer motivated me to take this trip, but it wasn't the reason for the trip. I have wanted travel west again for months; Cancer just gave me a deadline after which a week-long vacation would become much more difficult. Did it make me more ready for cancer treatments? I don't think so, but it did give me time during which I didn't have to think about the disease and could instead enjoy the beauty of nature and reconnect with an old friend. Those qualities would make any vacation a success regardless of the motivation.
Is there such a thing as chronic bone cancer? If there is, then I have it. A routine checkup last week found metastatic bone cancer tumors in both of my lungs. An extensive battery of additional tests confirmed that a minor pain in my right thigh is caused by another tumor. It is unclear whether these occurrences are related to last year's diagnosis. I also don't know yet what the exact treatment will be.
I wish I were a more skillful writer so I could better express how deeply frustrating and discouraging it was to learn I have cancer for a fourth time. Having passed my qual, this semester was supposed to be the first that I could devote solely to research; now I will have to split it between research and cancer treatments. After going to the gym nearly every other day since mid-February, I had finally passed last summer's best bench press; now vicious chemotherapy drugs will knock back any gains I made. An unlucky combination of genes has eaten away at my legs for the past eight years and now it has decided to go after my lungs.
All this came as a complete surprise. Unlike my previous diagnoses, I didn't have an enormous lump or stabbing pain anywhere. The only indication that something was wrong was a slight soreness in my right leg. Random aches are normal with that leg, but a spot near my hip had been bothering me since I bruised it while rock climbing. I drove to Indianapolis for my standard every-three-months-post-cancer checkup, hoping to get confirmation that the pain was harmless and expecting to return to Champaign by lunchtime.
I got several x-rays of the leg and my chest. After the scans, my surgeon very directly stated that the chest x-ray looked abnormal.
I didn't get back to Champaign. In the week since that initial x-ray, I have had a litany of additional scans. First, my surgeon ordered a CT scan of my chest and an MRI of my hip. Then, my oncologist ordered a full-body PET scan—my first—for Friday and a bone scan on Monday. Today I had another MRI of my leg, slightly lower than the previous one to better show the tumor.
Unlike my previous diagnoses, I was able to keep CDs of images for nearly all of the scans. The PET scan was particularly interesting. It is used to gauge metabolic activity. I was given an injection of radioactive sugar and told to lie still in a dark room. The important thing was to keep nonessential metabolic processes to a minimum. No movement (and no thinking) for two hours. I fell asleep, which I am told was probably the best thing to do. Then, I was taken to another dark room with the scanner. The tumors showed up as small bright blobs in the resulting images.
The bone scan shows bone growth. The leg tumor appeared, but the lung tumors were hidden.
The MRI showed the position of the leg tumor at the top of the femur. It is difficult to see much detail because all the metal in my leg interferes with the scan.
Lung tumors are undoubtedly a Very Bad Thing, and with my history, treatment will be a challenge. Fortunately, there are medicines and techniques available that did not exist just five years ago. I will write about the particulars once the plan solidifies.
I greatly value the love, support, and kind wishes that so many have sent. Thank you all.