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On February 1, I graduated to a sleek aluminum and carbon fiber prosthetic.

Most of you reading this weblog probably already know about "my new leg" since it took me forever to write about it. Sorry about that.

It fits much more snugly and is much more comfortable than my last temporary. The springier toe and more flexible ankle make it much easier to walk. I also think the woven black shell and curving ankle look a lot better. The prosthetist asked if I wanted to get it covered with fake flesh, but I told him I preferred the technical look.

On Monday I got a second cast made for what will likely be my permanent prosthetic. I took pictures of the process and added them to the text describing the first casting.

On the Monday before Thanksgiving I got word from my prosthetist that I could start walking unassisted. Immediately after hanging up the phone I walked across the parking lot to my surgeon's office. It felt great! I was beaming, but my surgeon was nonplussed. "Oh, I see you got your prosthetic. Good." He said.

Two days later I spent an evening with Michael, Elise, and Eric. I drove and had my magical handicap placard, so we parked in a handicap spot right next to some bicycle cops. One of them came around to my door and said, "excuse me, sir. We aren't traffic cops, but my boss is a real stickler for handicap spots..." Before he could finish the sentence I pulled up my pant leg to reveal my aluminum ankle. He swallowed and said, "we'll take that any day, sir. Have a good night."

My gait has gotten smoother since then, and passersby don't notice anything strange about my legs. It feels like my life is finally returning to (what passes for) normal. Last week I even went to the gym for the first time since July.

Update 12/12/07: I added pictures from the casting for my second prosthetic to illustrate the original text.

Two weeks ago I got a cast made for my first prosthetic leg. Last week I tried on the leg and walked (albeit assisted by crutches) for the first time in a month and a half. Since then, I have been proudly showing off my new foot.

To make the hard shell of the prosthetic into which the stump of my leg fits, it was necessary to make a cast of my leg starting from just above the knee. Making the cast was a multi-step and multi-layer process. First, my prosthetist wrapped the stump of my leg in a transparent silicone sleeve similar to the compression sleeve I had been wearing since the second appointment. Then, he left the room and returned with a four foot long, one foot wide latex balloon.

He pressed the top of the balloon against the end of my leg, and in one quick motion, opened the other end of the balloon and inverted the latex around the silicone wrapping as the air rushed out.

He smoothed out a few wrinkles, then outlined the knee joint, kneecap, tibia, and other important points with a blue marker. These were points where the technician would have to create bumps or dips in the hard shell of the prosthetic. The prosthetist noted that I appear to be slightly bowlegged, which was news to me. I suspect it is because I favored my left leg for so long.

I asked if he planned to stretch the latex over the final casting. That seemed strange, since he couldn't know that the markings were in the right places. No, he replied, the markings would transfer to the inside of the next layer, a fiberglass cast just like one gets to protect a broken bone.

He pulled over a tub of bright pink grease, a bucket of water, a thick rubber sleeve with a flexible tube sticking out of the bottom, and a mean-looking vacuum pump with valves and pipes sticking out of its gray surface.

He coated my leg with a thin layer of the grease to help it slip out of the hard casting once it set. Then, he dipped a roll of fiberglass casting material in the bucket of water and wrapped my leg from the top down.

The rubber sleeve went over that, with the tube running to the intake of the vacuum pump. He turned on the vacuum, which tightened the sleeve and casting material around my leg.

It did not take long for the casting material to set. The rubber sleeve came off as soon as he turned off the vacuum. Then came the cast. Inside I could see the mirror image of the blue markings he had made.

The latex sleeve rolled off like a surgical glove. As it snapped off the end of my leg, a plume of powder flew all over the prosthetist.

Last week I got the prosthetic.

My leg fit snugly in the plastic shell, but the prosthetist had to make a few adjustments to make it as supporting and comfortable as possible. He marked a few tight spots with the same blue marker as in the previous visit. He expanded the tight spots by heating the plastic in a back room.

To figure out the correct height, the prosthetist had me stand on foot-shaped sheets of varying thickness. I would stand on one then another while—just like an eye doctor—he asked, "Which is better... this one? ...or this one?"

When I decided on a height that felt comfortable, he removed the foot assembly with a metric hex wrench and cut the corresponding thickness off of the top of the pipe that forms the ankle using a C-shaped pipe cutter like any plumber would use. He noted my interest in the tools he was using and warned me not to try to disassemble the prosthetic myself. Darn!

With all the adjustments complete, I finally got a chance to walk! First, in the examination room using two parallel bars for support, then in the hallway using my crutches.

Dad and Sue came with me to the prosthetist's, and they were both beaming when they saw me stand on two feet again. It felt great to get some of the weight off of my hands when crutching. The prosthetic also helps my balance, and it looks completely normal when covered by my pants.

My prosthetist wants me to stay on crutches for at least another week to allow my leg to acclimate to the prosthetic. At that point, I will probably switch to using one crutch or a cane. Not long after that I can start walking normally. I can't wait!

Many people suggested that for Halloween I should dress up as a pirate with a real peg leg. It is a good idea, but I feel pirates are overrepresented. Instead, I went as a shark attack victim.

The costume cost me less than $20. The biggest expense was a bloody fake foot from a costume shop. I told people I fought off the shark and tore the foot from its jaws. No one noticed that it was a right foot rather than left.

I also cut up two old shirts: one with bites taken out of it, and another to make the bandage around my leg. I doused both in fake blood made from corn syrup and food coloring. I completely emptied the red bottle and used a splash of the blue to make the blood darker.

I met a group of CS friends on Green Street, the main entertainment strip near campus. I got some amazing reactions while crutching down the sidewalk. One guy did a double-take and yelled "Oh my god!" while nudging his friends to look. Another had to wave his hand under my leg to convince himself that my foot wasn't there. The best reaction by far, though, occurred when a group of girls asked if they could take a picture with me:

We spent most of the evening in two bars, admiring the parade of costumes. The second bar had a costume contest. Everyone was convinced that I would win, but the judges were so disorganized that they never announced the winners.

It was a fun evening. More pictures can be found here and here.

Yesterday marked the end of the most recent stage of the cancer/surgery odyssey. I got the surgical staples removed, got a new leg dressing from my prosthetist, and made the trip back to Champaign. Today I rejoined academic life.

Dad accompanied me to the surgeon's office early in the morning. We placed bets on how many staples the nurse would have to remove. He guessed 50 and I, 40. I counted 35.

We met Sue at the prosthetist's office. She got a show-and-tell similar to the one Dad and I got on the last visit. The prosthetist gave me a silicone compression liner that I will eventually use in the fake leg. Interestingly, I need to wash it every night with hand soap and disinfect it twice a week with unflavored mouthwash. It seems strange to clean an expensive engineered silicone medical implement with random bathroom products.

Since the last visit I have had painful phantom sensations in my missing leg. Sometimes it feels like the leg is trying to "wake up" from being asleep. Other times it feels like something is gouging the sole or heel of my foot. Really, my brain is trying to rewire itself to handle the missing or confusing signals from the remaining nerves in my leg. My prosthetist recommended patting the sides of the stump. My surgeon prescribed gabapentin and suggested that hypnosis may help. I have not gotten to the point of trying hypnosis, but the other two approaches seem to help temporarily. The pain should decrease with time as my brain and nerves adjust.

After grabbing a quick lunch, the three of us departed for Champaign; Dad in his SUV and me riding with Sue in my car. They took me grocery shopping and helped me carry things up the two flights of stairs to my apartment. I am not looking forward to traveling up and down those stairs with crutches every day. Fortunately, I will get a temporary prosthetic in a month or two that should make the trip easier.

Today I attended classes. I kept up with homework while I was gone, so my transition back to academic life should be pretty easy.

Thanks to everyone who sent good wishes over the past two weeks.

After a week of websurfing, reading, watching TV, and attempting to catch up with my schoolwork, I finally had a productive day today. I got the enormous surgical dressing removed, met a prosthetist, and got handicap placards from the BMV.

The nurse removed the dressing using sturdy fabric shears. By my father's count, he removed seven layers, mostly thick cotton batting. He gingerly folded back the final layer of stretchy gauze, revealing the surprisingly small stump of my lower leg capped with a neat row of surgical staples. (No, I won't post a picture.) I was very relieved to get the massive weight of gauze and cotton off of my leg. I could move my knee again! And scratch the itch below my kneecap that had bothered me all week! Heaven!

My surgeon took a quick glance at the staples and decided they should stay in for another week. Fortunately, they did not require another dressing, but my surgeon recommended that I wear an ominously-named "stump shrinker". Essentially, it is an elastic tube, closed with a plastic ring at the bottom, that is worn to reduce swelling. The nurse fashioned a temporary stump shrinker, then sent us across town to a prosthetist for a more robust one.

The prosthetist, a jolly-looking bearded man with a slight limp, gave me a white stump shrinker that was functionally identical to the brown one I got at my surgeon's office. Then, he brought in four fake legs for "show and tell". The technology is amazing. The prostheses are held onto the stump with a silicone sleeve that has a toothed pin at the bottom. No straps, velcro, or buttons. The pin locks into a hard shell attached to the aluminum and carbon fiber foot. The ankle, heel, and ball of the foot are all articulated to simulate the pull of muscles.

They work better than the leg I lost!

The plan goes like this: in a few weeks, once the swelling goes down, a technician will take a casting of my leg. That will be used to create a temporary prosthesis with which I can practice walking while my leg shrinks further. After a few months, they will take another casting for the permanent prosthesis. Once I get used to that, they will enclose the shell in carbon fiber and, optionally, fake flesh. I, of course, plan to leave the carbon fiber exposed. So cool.

Next stop was the BMV. First, I wanted to get a handicap placard for my car. The second reason requires some backstory: two summers ago, I completed a two-week-long motorcycle training course offered by the state. (I never wrote about the course, so I unfortunately do not have a weblog link.) I got a certificate that would give me my motorcycle endorsement if I simply presented it at any BMV. I never did, so the certificate remained in my wallet until today when I decided to cash it in.

The BMV employee laughed when I gave her my unique request. I, a young man on crutches and missing part of his leg, wanted both a handicap placard and a license to drive a motorcycle.

It only took only a week for my doctors to diagnose the tumor in my ankle and decide to amputate below the knee. It seems appropriate that the surgery itself was just as rapid. I arrived at the hospital at 7 AM last Tuesday, entered the surgical room at 8:30, and was awake by 11. My surgeon said the operation took just 45 minutes.

I woke in a wood-paneled hospital room with what remained of my left leg wrapped in three inches of cotton gauze. Even with the heavy dressing, my leg was noticeably lighter. For the rest of the day I swam in and out of the morphine. A physical therapist arrived around 3:00 and asked me to crutch between the bed and a chair. He returned the next morning and had me travel around the recovery floor. It took me a while to get used to the asymmetric weight distribution.

My surgeon visited a little while later. I had decreased my morphine intake overnight, and he felt that pills could take care of any remaining pain. That meant I could go home if I wanted. By the time my parents arrived, I was already dressed, and the nurse was finishing the discharge papers. I was home by 3:00, just 30 hours after major surgery.

Pretty amazing.

Since then, I have monopolized my parents' recliner.

Six years ago, almost to the day, I finished chemo treatments for bone cancer in my left ankle. About a year and three months before that, I finished treatments for a similar tumor in my right knee. Both diagnoses required surgery to remove the tumors, and both times I thought it would be the last time I would have to deal with cancer.

About halfway through last summer, I noticed some pain and swelling in the ankle that had been replaced six years earlier. I attributed it to increased activity. I had been hiking a lot [note the mention of "leg trouble" in that link], biking to work every day, and going to the gym three times per week. I cut back on hiking, biking, and workouts, but my ankle seemed to get worse. After about three weeks, the swelling had become a pronounced lump on the inside of my left leg, right above the ankle joint.

I made an appointment with a local general practitioner who sent me to the hospital for x-rays. The scans went quickly, but I would end up spending six hours in the emergency room steadily progressing up the hospital organization chart. In order, I met: an ER nurse, an ER intern, an ER resident, an ER doctor, an orthopedic intern, an orthopedic resident, and finally the orthopedic supervisor. Their eyes grew wide when they turned on the x-ray screen and saw all the hardware screwed into my ankle. None of them could say anything definitive, but my blood tests did rule out infection.

I tried to schedule an appointment with an orthopedic doctor in California, but he could only see me after the day I planned to return to Illinois.

I had the California x-rays sent to my normal orthopedic doctor in Indiana. He said everything looked fine except for what appeared to be a stress fracture around one of the screws holding the metal plate. The fracture appeared to be healing normally, so he did not know what could be causing the lump. I made plans to see him as soon as I could get back to the Midwest. That appointment, a week into the semester, was also inconclusive. Since nothing appeared on additional x-rays, he speculated that it could be a pseudoaneurysm, a mass of blood pooling in a damaged blood vessel.

He scheduled further tests and scans for after I returned from the conference in which I presented my research paper. [I may decide to write about that trip in another weblog post.]

The next appointment took place on September 17. By that point the lump had grown considerably, and the pain had gotten bad enough that I had started using crutches to walk long distances.

The doctor seemed stumped. He took a biopsy "just to rule out cancer even though the x-rays don't show anything". He barely got any tissue because of all the blood that came literally pouring out of the incision. Apparently it was enough because on September 20 he called to say it was another osteosarcoma. In his words, "there is a rind of tumor around a mass of blood."

A third tumor!? Recurrent bone tumors, especially this long after a previous diagnosis are very rare. It is likely a new occurrence, unrelated to my previous two tumors. We cannot know for sure if the stress fracture was a partial cause or effect of the tumor's growth, but I find it interesting that an "osteosarcoma usually develops from osteoblasts (the cells that make growing bone)".

Things went quickly from there. On Monday, September 24, I got a bone scan and chest CT scan to make sure the cancer hadn't spread. Fortunately, it hadn't. I met with my oncologist who admitted that treatment options were limited due to my history. If, improbable as it may be, the tumor was somehow related to the last one— say, a single cell survived chemo and "slept" for six years— then those cells would have greater resistance to chemo drugs. Also, I was skirting the maximum lifetime dosage for several of the most effective treatments. I did not have many surgical options, either, because of all the hardware already in my ankle.

My oncologist and surgeon discussed options with their network of doctors around the country. Yesterday they made their recommendations: chemo would not be effective, and limb-sparing surgery was infeasible. They will need to amputate my leg below the knee.

This a drastic approach, but I agree it is the right choice for the long term. I will not have to subject my body to months of chemotherapy, and there is a near 100% chance of getting rid of all the cancer cells. Also, the recovery time is much shorter. I will only have to stay in the hospital for a day or two after surgery. In four to six months I will get a prosthesis for my lower leg that will allow me to bike, hike, and do all of the other activities that I enjoyed so much last summer.

Surgery is on Tuesday. I will post updates as they come.

As some of you may know, my left leg is my "bad" leg with the ankle transplant and stainless steel plate. My right leg is my "worse" leg with the titanium knee joint. The knee bothers me from time to time, but nothing like what sprung up last night. As I laid down to sleep, I felt a terrible throbbing pain extending from below my hip all the way to the ankle. No matter what I did, I couldn't get comfortable, and the pain kept me up all night. This morning I went to the student health center to get it checked out.

As I expected, the doctor didn't find anything spectacularly obvious after poking, flexing, and x-raying the leg. She ended up giving me some anti-inflammatory drugs and sending me on my way. If the pain lasts more than a few days I'll make a quick trip back home to have my orthopaedic surgeon take a look at it.

Anyway, none of that is important. It's all just backstory to how I got these cool pictures:

This is a front view of my lower femur. Near the top you can see how the bone has regrown around the upper part of the titanium joint. I think it looks like candle wax. At the bottom you can see knee joint itself.

This is a front view of both knees. Here you can see the titanium hinge very clearly and the hole in the upper tibia where it sits. In the good knee, note the weird (and completely harmless) bone growth above and to the right of the joint. Sue thinks it makes the bone look like a guitar.

This is the coolest picture. You can see the true shape of the implant as well as the strange stuff they did to the knee cap.

A front and side view of the lower leg.

This picture is looking down at the top of the knees. It really shows the difference between the natural knee cap and the "bionic" one.

I find it amazing what the doctors were able to do. I am continually thankful that I am able to walk across campus normally thanks to effective cancer treatments and all that hardware.

If you found these pictures interesting, you'll enjoy this virtual knee surgery.

The last 24 hours have been absolutely insane. Yesterday I left work and headed straight over to the neigboring school district's football field for the American Cancer Society fundraiser walk. The organizer Judy had seen the newspaper article about me and asked if I would be willing to take part in the festivities by playing some of my music and giving a talk. I agreed and also passed the information about the fundraiser on to my school's Key Club, who eventually put together a team to take part in the walk. While they were walking yesterday, I played my music for about 20 minutes. I had hoped to play longer, but oh well. After that I waited around for a while before giving a short, unrehearsed talk on my experiences with cancer. It was successful if for no other reason than it made Katie and Feng, two members of the Key Club team, cry. I'm glad I got to take part in such a good cause.

Now as for today, I went with Mark, Erol, and Kim to a local jazz festival. Interestingly enough, one of the acts we saw was the guy who got third place behind me in the music contest last March. He was absolutely amazing. What a great music filled day. Luckily, the four of us left right before the entire festival got rained out.

At the school board meeting last Monday, I met a reporter who was doing a story about Michael and me becoming the National Merit Scholarship finalists. That meeting led another reporter to call me to schedule an interview for a story about me and specifically my experiences with cancer. I met her after school today, and we had a surprisingly enjoyable talk about everything I went through and everything I did during my two cancer diagnoses. Her story should be in the paper on Monday. I'm looking forward to seeing what she writes about me. As an interesting side note, she knew Jeremy, the rest of Big Sur, and Charlie's band Iris from what I assume was a story she wrote about high school bands. I'll have to ask Jeremy about it next time I see him.

I almost forgot to mention it, but yesterday there was another important landmark in my cancer recovery: I got my hair cut for the first time in about eight months. I got it buzzed really short just in time for cold weather. Yay!

I keep telling myself I'm going to start working out again. Last year, in an effort to get back some of what I had lost from my first round of bone cancer, I decided to take weight training at school. I was a little leery at first, but I soon found that I liked it. I had always thought I wasn't the "sporty type," as evidenced by my unbridled hatred of gym class, but then I started seeing some results in weight training. I think the difference was that weight training was less structured than gym and we weren't being told to run a mile or learn ridiculously inane games that nobody plays (cageball comes to mind). Also, weight training was the point in my day that I could relax, not think about anything, and just work out. I feel that I'm missing something now without that physical release every day.

I had been doing well throughout my junior year up until I found out about a second tumor in my ankle. As soon as I started chemo about two months before school ended, my strength fell drastically. I still did what I could, but when your body is trying to recover from an assault of toxic chemicals, it doesn't really have much time to build muscle. That summer I continued to lose strength as chemo treatments continued. I wasn't feeble or anything; I was just back to where I started a year before.

Now that I'm done with this second round of cancer, I've started thinking again about gaining back what I've lost twice now. Unfortunately, I can't take the same weight training class because I now have two bad legs, so I've been thinking about doing stuff on my own. My plan is to start out with pushups and situps, progress onto my Dad's weight machine, then begin using the school weight room after school. We'll see how it goes.

I've been busy lately passing out fliers for "Brett Daniel's Big End of Cancer and Halloween Party" to almost everyone I can think of at school. So far I'm planning to have live music (myself included in the band list), lots of food, Halloween costumes, and lots of friends. It's looking to be a good party. (crosses all ten fingers and toes and knocks on wood)

I'm back from my VERY LAST CANCER TREATMENT!!! Yippee!! This last treatment was pretty unique. Yesterday evening, I played guitar with Mark while Debbie listened. After they left, a girl named Amanda came in and said she had heard us playing down the hall. It turned out that she played, too, so we traded the guitar back and forth for a while. It was a lot of fun. Today, since it was my last visit, the nurses had a going away party for me during lunch. Now I'm home. Yippee!!!