Jeff
Needles have always been a horror for me. I remember years ago, when I’d see cancer patients, I’d think to myself there is no way in hell that I could tolerate having needles in me. Two years ago when I got sent home from the hospital, I had a home care nurse to administer my injections… but now, in the age of cutbacks, hospitals are teaching patients how to self-administer their own needles. So this time I got sent home with two weeks of shots to be injected into my stomach. Being taught was awful. My hand was so hesitant to put a needle into myself... the nurse would force my hand forward and I would force my hand away. But after about three days I was able to do it on my own. And soon, I started to enjoy it – it becomes super macho, like bungee jumping. (Yes! I can add self-injection to my list of life accomplishments!) This week I finished my last shot and I have to say I’m slightly sad that it’s over, just as I was getting really good at it. I’m also winding down on other drugs… tomorrow is my last day on antibiotics (phew!) and my morphine will be cut down by 15mg on Monday. All of which will help lift off the heavy cloudy haze that I’m currently living under. It’s important that I keep pressure off my left side for six weeks, so not to compromise the success of my surgery. I sleep in a fortress of pillows which should lock me into sleeping on my stomach, but sadly and scarily, I always seem to wake up with pillows strewn all about my room and I’m slightly on my back. Hopefully I’m only on my back for minutes as opposed to hours. I’m sure there’s some kind of internal brain monitoring that’s going to make sure I don’t blow this. On Wednesday I will go in and see both sets of doctors to get my stitches out and assess how well things are healing. That will be three weeks down, and three more to go before I can comfortably sit in a chair again!

Jeff
I got discharged from the hospital last night... everything is healing well, faster then expected. I'm currently on 90mg of morphine per day so there’s a way to go before I’m back down to normal living. Sleeping lots, learning to cope with living on one side of my body. I know that the nature & spring healing metaphors are running rampant, but here’s a great photo of daffodils that my cousin Larry sent me which sums up where I’m at and where I’m going to!

Jeff
Surgery went well... All the doctors agree it was successful. I awoke from surgery and got a personalized letter from Terry Fox's parents, Betty & Rolly Fox -- what great timing (very surreal). So far I've had numerous nosebleeds (thanks to oxygen & blood thinners) and a whopping migraine from morphine, both of which have subsided finally. Lying I'm the same spot for 36 hours is difficult, I never knew that gravity could be so painful. Tomorrow I will be more vertical which will relieve some pressure.... Hopefully I'll be taken off all I.V.'s by Saturday and home by Sunday!!

Jeff
I knew a surgery was around the corner – I was pre-admitted to Mount Sinai in early January, but due to a number of complicated factors, the surgery was delayed. The scheduling was difficult due to the fact that I’m being operated on by two surgeons from two different hospitals. I’ve been waiting in limbo, in hopes that my body would heal on it’s own, and in fear of having my back cut open for the fourth time. I have a deep rooted infection, that is somewhere around where my spine meets my pelvis. The tissue will not heal and currently I require a nurse to bandage me up every other day. For this surgery they plan to remove the stubborn tissue, and replace it with healthier tissue from another area of my back. This will require a plastic surgeon, who normally spends her time doing breast reconstruction for cancer patients. I’ve been told that I’m in for a short hospital stay (3-4 days) followed by 6-8 weeks of being unable to sit in a chair or lie on my back (!!) (ummmm… what am I allowed to do, float?). I imagine that it’s like having a water balloon sewn into my lower back – if I put pressure on it, I risk pushing it out of place or destroying it before the tissue is able to graft. Tonight I cleaned up my medical supplies in my bedroom, threw out syringes and forceps… my room been a portable hospital for the past year. Fortunately for me I’ve had one main nurse, someone who was a total gem, nurse Florence from Uganda. For 14 months I haven’t been able to shower without the presence of my nurse, or sleep without towels under me to prevent myself from bleeding all over my bed. I’ve lost my independence in a big way and it’s hard to believe that if this surgery is successful then all of that will end. It’s scary to imagine what my body will feel like a mere 12 hours from now – it won’t be pretty, but I have a new inner strength. For the past two weeks I’ve been involved in a neighbourhood dispute that’s required a huge amount of my organization and energy. I objected to my neighbours grand plans to turn his one story garage into a three story house, a development that would cast a shadow literally and metaphorically over my life. Yesterday I received the news that I was successful in getting a deferral -- I can’t tell you how great that feels. It’s a lot like fighting cancer – it was completely unsetting but needed to be faced head on. I had an amazing number of people who rallied around and supported me and become new friends. Thank you to you all – this small victory has given me the confidence I need for my own fight tomorrow.

Jeff
In honour of Martin Luther King, Jr. Day, here is an excerpt from his book Strength To Love:

I first flew from New York to London in the propellor-type aircraft that required nine and a half-hours for a flight now made in six hours by jet. When returning from London to the States I was told that the flying time would be twelve and a half hours, although the distance was the same. Why an additional three hours? When the pilot entered the cabin to greet the passengers I asked him to explain the difference in flight time. "You must understand something about the winds," he said. "When we leave New York, a strong tail wind is in our favor, but when we return a strong head wind is against us." Then he added: "Don't worry, these four engines are capable of battling the winds."

At times in our lives the tail winds of joy triumph and fulfillment favor us, and at times the head winds of disappointment sorrow and tragedy beat unrelentingly against us. Shall we permit adverse winds to overwhelm us as we journey across life's mighty Atlantic? Or will our inner spiritual engines sustain us in spite of the winds? Our refusal to be stopped, our courage to be, our determination to go on in spite of, reveal the divine image within us. The man who has made this discovery knows that no burden can overwhelm him and no wind of adversity can blow his hope away. He can stand anything that can happen to him.

- Martin Luther King, Jr. 1963

Jeff
My wound tunnels are getting narrower, and becoming more difficult to pack. The sensation in my back has increased and it’s now officially painful. The salt packing feels like tiny shards of glass soaked in vinegar being stuffed inside me. Despite the holes getting smaller, there is still a large stubborn pocket deeper inside of me that refuses to heal. The daily treatments are starting to wear me down. I think it’s a the cumulative effect of having had a 45 minute nursing visit almost every day for the last 10 months. It is violating on so many levels. My yoga teacher, who also had surgery on her back, observed that despite how much a person is surrounded by love (and I feel very fortunate), none of that love can relieve physical pain that exists. But yoga class is helping, at least psychologically. It is 90 minutes of enforced relaxation, and after a year and a half of chronic pain, I’m starting to get glimpses of comfort. One of the things they do that I love is that I lie on my back, completely cushioned by pillows and blankets, and they put sandbags on my hands to flatten them out. This helps reverse the clenching grip that I’ve developed while being on crutches. It’s quite powerful both physically and emotionally because it reminds me of normalcy, this absence of tension. Another thing that reminds me of normalcy is attempting to do real “work” (ie. sitting at a computer for longer then one hour). I’ve spent the last few days preparing for a talk I’m giving at the Flash Forward Photography Festival . It will take place in Liberty Village in Toronto this Thursday October 7th from 2:00pm – 3:30pm. I’m quite proud of the visuals I’ve put together for this, and hopefully my words will eloquently match up. This event is free to the public and I would love to see you there!

Jeff
I took a break from updating this journal, I was hoping to wait and write once there was a light at the end of the tunnel but that light hasn’t come. It’s been nine months and the holes in my back are still oozing. It is extremely painful to sit in a chair, stand on my legs, or to lie on my back. The Manuka honey that I wrote about in June did not work (I think I was in denial, secretly enjoying being packed with honey). It was messy, it caused the discharge to increase and my holes to get bigger. At their worst in July I was being packed with one metre (!@!!#) worth of gauze. I have since been seeing a wound consultant at the Women’s College Hospital who changed up my protocol. I’m back to daily nursing visits and on a much more aggressive dressing of Mesalt and Betadine that causes skin irritation and me to bleed a lot more… but this direction is tangibly better. One of the holes has already closed and the other two wounds are getting much smaller (the nurse is now packing with half a metre of gauze). It can be full time job keeping my clothes, towels and furniture clean. It is frustrating having no control over my body, my inability to freely take a shower, and instead just stay in soaked bandages – not exactly a self-esteem boost. At it’s worst, I was debating about switching over to plastic bed sheets but I’m over that hurdle now. I’m starting on a three week, double dose of antibiotics this Monday – I’m both familiar and worried about what this will do to my digestive system but I’ve got lots of yogurt on hand to help. These wounds have done a number on my lower back -- my posture is completely shot, and I have back pain like I’ve never had before. I have frequent headaches and feel toxic due to the drugs I am on. With the morphine comes microscopic hallucinations that last for the blink of an eye but feel like fully realized dreams. This can be confusing when watching a movie and feeling like I know the plot development when in fact it was just the drugs talking. I still do physiotherapy twice a week, and I recently enrolled in the “Special Practices” class at the Yoga Centre up at Yonge & Eglington twice a week as well. Having just completed my first class, I feel like they have a strong sense of therapy and a hands on approach to helping me (that has been sadly absent from my current physio). This is very exciting and I’m sure it will give me cause to write more positive developments over the next few weeks. This Sunday, I’m running (or crutching) in my 19th consecutive Terry Fox Run. Click here if you are able to sponsor me! Thank you for your continued support!

Jeff
Two of my photographs are on display at the Cancer Connections exhibition in Ottawa from now until June 10th (in Major's Hill Park, behind the Chateau Laurier). Here's a great clip from the CBC.

Jeff
I continue to fight this resilient surgical infection that I've had since Christmas. Things are slowly improving, and just recently my nursing visits were reduced from every 24 to every 48 hours, which is a relief. I currently have three holes that drain and bleed infection from the depths of my lower back. These holes “communicate” with one another, and form tunnels inside me in a way that mimics an anthill, I imagine. My nurse syringes saline into one hole and eventually it flushes out the other. When one hole closes, another hole (somewhere else along my suture lines) eventually opens up. Not only am I tired of this, so are my towels, clothing, and (white) beds sheets. A recent consultation with a wound specialist recommended that we start packing my back with Manuka honey (a honey from New Zealand known for it’s antibacterial properties and it’s antifungal ability to help stubborn wounds close). This application has cut down on my purulent discharge, and in turn has cut my nursing needs in half. The other direct benefit is that I now smell amazing, and bees like to follow me everywhere I go! I feel like my chronic irritation is fueled by the way my bones have settled in my lower back after the pelvic resection (hello, scoliosis!). I believe that with time my body will adapt and the infected discharge will smolder itself out like a fire. It is super depressing, but my orthopedic surgeon is reluctant to do a fourth surgery on me (and frankly, I don’t want to put myself through another surgery either). A (different) doctor friend reassured me by saying something along the lines of “If your orthopedic surgeon (a class that stereotypically loves to fire up the chainsaw) is advising *against* surgery, then you should trust his word.” So I’m putting all my faith into the Tincture Of Time, which is guaranteed to cure all wounds.

Jeff
Well, there are really great things about having had cancer. Like for instance I just received a personalized letter from Terry Fox’s parents Betty and Rolly, who had heard about me doing the Terry Fox Run for 18 years straight (“a remarkable feat in itself”) and were concerned about my diagnosis of cancer (“we hope that 2010 is a year of hope and healing”). Hand signed and postmarked from Vancouver – surreal! And then there are crappy things, like a recent visit to the hospital revealed that I have gynecomastia (ie. I am starting to grow female breast tissue). Thank you, nortriptyline (a drug I take five times a day). This is a good example of fine print that you think couldn’t possibly be serious. I have spent one entire year working out a delicate & complex drug recipe to keep me comfortable, and now back to the drawing board. I carry with me a slight case of post-traumatic stress when it comes to the month of April. Last year I missed out on 30 days of spring, and so it is both sad and exciting to experience April one year later. It has been two years since I have seen the blooming spring flowers: magnolias, crocuses, daffodils, hellebores, & pansies. I am currently up at a cottage in Muskoka and so appreciative to have spent today lying in on a dock in the sunshine (yes, cancer has it’s perks). Happy Earth Day!

Jeff
Today is the one-year anniversary of my life altering surgery. I’m obviously happy to be cancer free but frustrated to be dealing with chronic pain 365 days later. I’m somewhat speechless about what has happened, where the time has gone, and why I am not healed. Back in 2008 (before I knew that I had cancer) I submitted a photograph to an online exhibition called “Cancer Connections” – the photo is of my friend Dave, who cycled across Canada to raise money for cancer research. Recently I added images of my personal cancer experience: from diagnosis, radiation, relaxation, fear, pain, clowns, home care, and rehab. The image of me diving into the lake is included in a touring photographic exhibit that opens at the Granville Square Plaza in Vancouver this April, and moves to Calgary in May, and finally Ottawa in June.

Jeff
I’ve been waiting to have better news to report, but I am still dealing with my infection. The silver that I spoke so highly of in my last post was a bit of a misleader. It caused the surface of my wound to clear up amazingly well, superficially. But when Florence recently probed the wounds she pushed through the surface of my back to discover two long tunnels, one being 8cm and the other 10cm deep, leading to sinus cavities that are still releasing infection. My doctor is saying it's possibly chronic and would require a severe operation to get rid of. So I’m taking a two month break from the hospital and my next appointment is in June to reassess the severity of the situation. In the meantime I continue to have daily home care visits to change the dressings. It’s a bit painful when stuffing the ribbon gauze into my back (with a Q-Tip), but I feel like a magician the next day when she pulls and pulls the ribbon out! Fatigue setting in, it’s been four months of this, and I honestly don’t know how I would cope if it wasn’t for the fact that the sun is shining brighter and the daylight hours are getting longer. Today was my last day for my (post-surgery) home care physiotherapy. I will start back again as an outpatient at Hillcrest next week and try to get in shape in time for summer!

Jeff
I’ve had a homecare nurse for almost three straight months, and up until last week there wasn’t an end in sight. Florence has been packing and unpacking my dressing with patience and optimism. Despite two exhausting debridement & irrigation surgeries, and a whack of crazy tests, the infection just keeps seeping out of me. It’s been a dark time, and I have spent most of it accepting that I will probably have a third D&I surgery in April. This infection is hard on my back, so sitting and lying down is very painful. And standing for long periods is hindered by my scoliosis. So the only thing that keeps me going is my percocets, morphine, and the energy of outsiders who visit and take me on adventures. When my coccyx was removed in the initial operation, they removed some of the muscles and nerves that make going to the bathroom an easy process. So I suffer from “hesitation” – which means that I can't turn it on like the faucet it once was – often it can take up to ten minutes for me to pee. This is not a big deal when I’m at home but it’s a bit creepy when I’m standing at a urinal in a public washroom. I now have to physically push and because I have so much inflammation, peeing puts pressure on my lower back and spine. (And don’t get me started about pooping). This past Monday I met with a doctor who specializes in wound care. He suggested dressing my back with silver (!!!). Who knew? I thought it was only for jewelry… but silver helps withdraw infection, and it keeps the area around my infection dry. After only five days I can tell it’s working well. My sister-in-law pointed out that LuLuLemon uses silver in the fabric for their yoga clothing because of its antibacterial qualities. My cosmic friend Sigrun has just informed me that we are in a Mars retrograde. That means, “everything that’s needed to move you forward has been stalled and/or you have to keep coming back at it to make it go/work. We just ended the retrograde and it's full speed ahead. There's a tiger inside of you that wants to get out now. Let it out!”

Jeff
After being discharged from the hospital I spent two weeks rushing to the bathroom, six or more times a day. I was worried I had brought home the Gold Medal in “C-Difficile”, but thankfully that's not the case. Being on antibiotics for forty days in a row (and then abruptly stopping) is pretty rough on the body. Last week I did a string of tests in the Nuclear Medicine department of Mount Sinai. These tests allowed us to learn the true source of my infection with microscopic precision that a regular MRI would not pick up on. The coolest test involved taking blood from my arm, spinning the blood in a lab to isolate the white blood cells, injecting those white blood cells with radioactivity, and then re-injecting it all back into my body. I could watch on a monitor as my radioactive blood cells raced to the infection site. We learned that my infection is not in my bones (as initially feared) but in the soft tissue of my back. My doctor has declared a one month hiatus from surgery (whoo-hoo!), to see whether my body can fight the infection without antibiotics. My wounds are still open so that the infection can drain out naturally. My home care nurse comes in every day to clean and pack my wounds, and so far things are progressing well. But some interesting side notes about those nuclear tests… I was told that the radiation would be in me for about twenty days and that if I was travelling to the USA I would need some documentation explaining to the customs officer why I was radioactive. I was also told to not hug any small children (!!!). I wondered why this was any different from having cancer radiation last year. The difference is that with radiation the source comes from the outside and cooks your insides (much like the sun gives you a sun tan). But with the test I had, by being injected with radioactivity, I became a radioactive source (much like the sun) and therefore hugging small children for long periods of time would have been understandably bad.

Jeff
It's hard for me to give an update today because I'm still waiting for test results and a medical plan. My surgery from Monday has left me with three open (and painful) wounds on my back that will slowly heal over the next few months. But the Infectious Diseases Team discovered a bacteria called pseudamonas, rooted deeply in my rotting pelvic bone (bone that was destroyed by radiation or surgery). I'm told that this bacteria is in an anatomically complex area, making a future surgery difficult. Tomorrow my MRI will hopefully answer the questions of how much of a threat the bacteria is to me, and how much bone would have to be removed to make me healthy again.

Jeff
Here I am back in the hospital. Surgery tomorrow. Third time is a charm.

Jeff
I’m going back in for surgery! I feel like I should carry a special frequent flyer hospital card, and for the third visit there will be some awesome toaster or clock that I get to take home with me. I check into Mount Sinai this Sunday January 31st, and hope to be discharged on the following Wednesday or Thursday. As you may have figured out, the last operation was not a success. When I returned home I had one day of calm, before my wound started to open up again. I still don’t completely understand what’s going on medically, but apparently I have a walled off cavity inside my back. It is constantly producing infectious fluid that is clamouring to get out via, now, three exit points in my back. My wounds are cleaned and bandaged daily by my wonderful home care nurse Florence. This third surgery is happening promptly, to prevent the infection from spreading into my bloodstream (“We don’t want to think about that happening,” says Florence). This time around they are going to put a sponge inside of me and keep the wound open longer. I have to say that going back to the hospital doesn’t get any easier. I still have the I.V. tape marks on my arm from last time’s visit for heaven’s sake. Being put under general anesthetic for a third time in ten months is almost comical to me. OK, what else could possible happen?

Jeff
I got discharged tonight, a few days earlier then expected. The wound site has to be draining less then 50 CC's of fluid for it to be safe to go home, and by today I was down to a mere 30 CC's of leakage. So the doctor yanked out my drain and I signed some papers and here I am at home. Talk about a whirlwind experience! I am so grateful as I had a loud roommate, an elderly man who had between two to five family members by his side around the clock. Including grandchildren climbing on his bed, and peeking over into my area. It drove me insane - it was something straight out of a Curb Your Enthusiasm episode. I'm still sore and oozing and I'll have a nurse come by once a day to fix me up. It will be two weeks before I can have a real shower again, and that will be a very happy day.

Jeff
Success!! My operation was resoundingly awesome, and I am typing from my hospital bed with so much relief and gratitude. The only fear I have now is that, medically, I must pee within eight hours post-op or they will catheterize me. At 6pm, I pounded back a jumbo sized cup of water, two apple juices, and one liquid jello dessert. Three hours have passed, and I am showing zero signs of needing to pee. My body has slowed down to a snail's pace and I am terrified of the consequences. The pressure is on!!! If only they could install a waterfall in my room. I have five hours remaining. Please, body, cooperate.

Jeff
I feel like I’m going on a vacation, only to a destination associated with pain and loss. I hated leaving my house nine months ago. The first operation they were removing parts of my body that were meant to stay in my body (goodbye pelvis, sacrum, tailbone & sciatic nerve… hello scoliosis, paralysis, muscle atrophy, and a foot at continual risk of amputation). I am dragging my heels at the thought of returning to the place where that all went down… the same smells, same operating room, same surgeon. But this time around they are removing things that aren’t supposed to be in my body (goodbye seromas, sinuses, abscesses… hello pain relief and clean clothing!) I’m thinking of this visit as more of a tune up. Kind of like getting your teeth cleaned. Only it’s your spine. I’m packing light, there's no pyjamas needed at this hospital! Whoo-hoo! Now, I’m out the door and on my way.

Jeff
Round two at Mount Sinai begins on Wednesday January 13th with a day of tests and operating room preparation. My surgery will be the following morning. They will cut open my back and remove the infected abscesses that made my Boxing Day so memorable. They will also take out the seroma at the base of my spine that developed from the fracture that I had in the summer. Sitting in a chair and lying down has been so uncomfortable for me and I'm hoping there will be some pain relief when all of this is done. I have the same amazing orthopaedic surgeon from before, so I know I'm in good hands.

Jeff
I’ve just finished my third day of the holidays on a bed in emergency at Mount Sinai Hospital. The swelling I hinted at a few weeks ago blew up into a full blown abcess – apparently something that’s been brewing in my body since my surgery eight months ago. It was like a giant painful water balloon on my back, running along my staple lines. Yesterday, during Boxing Day breakfast buffet at the Chateau Laurier in Ottawa, my abcess decided to explode. By the time I got back to my hotel room my entire back and pants were drenched in blood – like something out of a Quentin Tarantino movie. I’ve been expunging blood and fluid ever since, burning through gauze, t-shirts and bedsheets. Today after some blood tests and a CT Scan, it was determined that I have to have another operation on my back to remove my sinuses. Thanks to Wikipedia, I’ve learned that sinus is Latin for "bay" or "pocket". A sinus is an abnormal cavity caused by the destruction of tissue. It’s a chronically infected tract that develops like a passage between an abscess and the skin. If I was older they wouldn’t operate – they would just send me home with lots of gauze and I would just leak infection forever and hope my family could handle the daily task of changing the bandages. But because I’m young they will open up my back and excise the sinuses in a surgery in early January. I’m absolutely not looking forward to returning to the operating room... but this hospital visit will be shorter (ideally four days, followed by wound care at home with a nurse). In other bad news, Vic Chesnutt - a musician I greatly admired - committed suicide on Christmas day. I’ve been a fan of his for almost 20 years… his entire band once stayed over at my parent’s house when I was in university. I saw him last month in Toronto and shared with him some of my medical pot spray. Vic has been a role model to me as someone with partial body paralysis. His sense of humour and sophisticated articulation overshadowed the fact that he was in a wheelchair. Sadly, he was $50,000+ in debt with endless medical bills, his health failing, and he didn’t see any way out.

Jeff
I learned an interesting thing at the Orthotist today about what caused my spine to curve. It’s rooted in the need for my eyes to see the world as level. So my legs, which are now different lengths, throw my hips off by four centimeters, and in order for my eyes to see the world as level, my spine curves to compensate. Since getting cancer I’ve picked up so many fun factoids about the human body that continue to surprise me. Try tilting your head by four centimeters and imagining if that’s how you saw the world!! Today I was outfitted in my snazzy futuristic leg brace. It’s pretty amazing. You will all wish you suffered from "drop foot" after you see this! It’s light as a feather and has a natural bounce to it which propels my leg forward like a rabbit. I've also added a 3cm lift to my short foot which is going to help my spine move back to it’s natural position a bit (I hope). I’m doing a rigorous exercise routine three days a week (at both Hillcrest and with a private physiotherapist) to help regain my strength and endurance. Perhaps as a result of this, my scar and lower spine area have started to swell up. I hope it’s nothing to worry about but it means I’m still spending the bulk of my time lying on my back in bed or on the floor watching movies. I’m very grateful to Maclean’s, who gave me a movie subscription, so DVDs are constantly arriving in the mail. If you want to watch a movie with me this holiday season (and/or do physio), come on over!!

Jeff
I’m thankful for the warm autumn that we’ve just enjoyed. The lack of circulation in my leg means that it is ice cold most of the day (in comparison to my warm leg) and this is getting worse as the weather gets colder. I have to be diligent with my left foot to make sure it is in pristine condition. I’m at such a high risk of infection that I’m no longer allowed to clip my own toenails! Every six weeks I have to go to a podiatrist to get them cared for. As my leg continues to atrophy, my toes are starting to curl downwards and so every night I stretch them backwards. My wish is that my 30 seconds a day stretch will slow this irreversible process. The crazy thing is that I can stretch my toes so much I could literally snap them off my foot because I have no warning sensation to tell me when enough stretching is enough. As for other bizarre side effects, the nerve drugs I take have dried up my salivary glands, making my teeth ripe for decay. My dentist recommended that I start chewing gum (yes!) to help generate more saliva. My teeth have been worn down due to this long year of chronic clenching but now that my pain is less I hope to learn to relax my jaw again. Tomorrow I start as an outpatient at the Hillcrest Centre Musculoskeletal Rehabilitation program. I’m thrilled to be going back into the hospital system, because I need more supervision and this will be a “team approach”. I’ll have multiple therapists working with me to build up my strength, correct my alignment problems and eventually teach me to walk. The Canadian Cancer Society commercial that I had auditioned for in the summer has come out. After you watch it, read a comment by a viewer who found it offensive – all interesting food for thought!

Jeff
I'm worried about permanent changes to my body as my muscles start to atrophy and my bones adjust to post surgical life. After six months of carrying my entire body weight on my right leg, my left hip has risen and the length of my left leg has shortened. My left butt has shrunk so much that sitting on a flat chair means that I sit tilted on an angle. My spine now curves to compensate for these imbalances. A big wake up occurred when I was getting a pair of pants shortened. The alterations lady pinned vastly differing leg lengths and I had to decide on the spot whether to get them shortened to my new uneven sizes, or be optimistic and hope my body corrects itself one day. After an MRI in October, my doctor told me that I now have scoliosis and will probably have it for life. My pelvis no longer supports my lower back like it once did because of the chunk of bone that has been removed. My doctor has given me a prescription to have a 3cm “lift” added to the bottom of my left shoe, to help balance me out. The MRI also revealed that my sacrum (or what remains of it) has a stress fracture, from a fall I had on my crutches earlier in the summer. My medication continues to increase and I think I've finally got the magic (& lengthy) recipe of medicine to help with bone pain, neuropathic pain, and poor circulation. It's elaborate... for each morphine pill I take, I take four other things to counter the side effects of morphine. All of this medicine leads to a foggy and sleepy brain. The doctor said that it will take between one to two years for my body to completely normalize from my surgery. I'm just 25% on my way! Whenever you read about cancer, they often describe it to the patient as "your cancer journey" — as if it's some ride at Disney World. I decided to make a slideshow to show my cancer journey (including graphic operation photos!). Viewers beware.

Jeff
My Terry Fox Run (or Wheel) was a huge success... I ended up raising over the $5,000. Wow!! Thank you everyone, I was expecting about one quarter of that. I guess there are benefits to having cancer! Another perk of having cancer is you get featured on the radio, I was interviewed post 'Run' on CFRB news. Over the last few weeks my doctor has quadrupled (!!) my neuropathic medication, and that has given me some relief from the sparks and jolts. One thing that astounds me is how huge my good leg has become - it appears to have doubled in muscle mass while my bad leg withers into nothing. I wish I could intervene but all I can do is just watch in amazement. Surgery has made me experience the world again brand new - this last week saw a bunch of firsts: my first time out in public without an escort, my first time posting a letter in a mailbox, and my first time using a bank machine. I'm sad that summer is over... it's bringing back memories like the last time I wore a certain pair of pants, felt a cold breeze on my cheek, or had the sun set before 7pm, was when both of my legs worked. Fortunately (or unfortunately depending on your perspective) my neuropathic drugs double as anti-depressants. I haven't noticed my mood change, but something over the past ten months has ruined my short term memory and killed my attention span. But the plus side is that I'm sleeping like a zombie now, and sleep is probably where most of my healing will come from.

Jeff
Funny thing about my last entry... the talent agency actually called me back, hoping I'd return for a second audition. I had to say no because I was up north in cottage country learning how to get into a lake and swim again, and that was more important then a future career in cancer commercials. I got an amazing amount of physiotherapy up in Muskoka, and my strength and agility has improved 200%. But along with that progress, I’m left with a realization of how my body will forever be moving forward. I have very little padding. The left side of my pelvis is so tender because the protective tissue and fat that normally protects our bones is not growing back. The same goes for the stump that’s left at the base of my spine. I will probably never sit on a wooden bench again. Sitting on a toilet seat is an exercise in levitation, much like a gymnast on a pommel horse. My doctor has prepared me for the fact that I may have chronic bone and nerve pain for the rest of my life, and that I may never come off Morphine. Interesting factoid: apparently prior to my operation, I was on enough drugs that my dose would kill a normal person. The doctor that writes my scripts is a palliative doctor and I was sent to him not because I am palliative, but because the level of drugs I needed at the beginning was at the level of palliative patients. I’m now taking about a quarter of what I was on since leaving the hospital, so that’s an improvement. I could almost be happy about that, except Morphine comes with the horrible side effect that makes going to the bathroom a terrifying experience. I’m past the point to using a spoon to dispense my laxatives - now I just swig straight from the bottle. And prunes are now becoming delicious to me. I still suffer from lymphedema - I've learned that the lymph nodes on my left side were removed during surgery. I can now add plane rides, hot tubs, and mosquito bites as things that will put my leg at risk for infection or blood clots. I also have venous insufficiency (my leg can’t pump the blood back up out of my foot) which makes my left foot purple, swollen and heavy with all the extra fluid. The compression stocking seems to work, but generally by about half way through the day phantom pain starts to kick in. I have two types: one is the electric cattle prod / fireworks experience which I’ve mentioned before, and the other is probably triggered by my stocking: a feeling like my foot is blistered, wrapped in elastic bands, or that my toes are crossed (even though they are not). My left leg muscles are in the process of atrophying, and the circumference of my left calf is considerably smaller then my right. My left leg has shrunk in length by 3cm, so I’m getting special orthotics to even me out. I was recently fitted for a fancy (read $1,000+) leg brace, which hopefully will be covered by my benefits. It’s made of carbon fibre, and is so awesomely Robocop looking that you all will wish you had a leg brace too. I'm gearing up to participate in my 18th consecutive Terry Fox Run on Saturday September 13th. Funny thing about last years run… it was the first day I ever drove a standard car all by myself. One year later, I am stripped of my ability to drive standard, not to mention that I can’t run or walk either. So someone’s going to have to push me in my wheelchair. E-mail me if you’d like to help. And most importantly, click here to sponsor my run.

Jeff
Last week a person contacted me because they had heard I had a big scar and suggested I audition for a commercial being created by the Cancer Society. I assumed the audition would be an intimate one on one interview. When I arrived, there must have been 50 people. It was a full on Hollywood style audition. I filled out paper work, with the main question being "are you a member of Actra?" -- so obviously many of my fellow cancer survivors were also actors (and way more qualified). They auditioned us in groups of three, I was with an older hearing impaired woman, and a middle aged woman who was very comfortable in front of the camera. They asked us to ignore the camera and improvise with each other, talking about our battle, but not using the word cancer. I am a horrible improviser, I was totally stumped and I didn't say much. And after about three minutes, they said "NEXT!" in that stereotypical way directors do at auditions, and with that we were done. I couldn't believe it. Going in, I thought I'd be a shoe-in once I showed off my super sized scar. But having to improvise (and not being able to take off my shirt), I was hopeless. Kind of a weird to think the next time you see a cancer commercial, it's not just the person you see on camera, but fifty other cancer patients that auditioned for the role and didn't get it.
In other news, I'm selling raffle tickets for the Chris Mansey Memorial Fund, five dollars a ticket, grand prize is a free West Jet flight, the draw is on August 30th. I hate to ask people for money, and I'm kind of stuck at home unable to go door to door, so in the spirit of reverse canvassing, please come to my house and buy a ticket!

Jeff
It's funny that after a surgery which practically cut my body in half, the biggest source of pain I have was caused by the radiation I got back in February. (And I thought radiation was fun!) My lymphedema is unforgiving. I'm still on the same dose of morphine I was on when I was discharged and this helps relieve the pelvic bone pain (which is ever present, probably because I am moving around now). Unfortunately there is nothing I can take to mask the crappy feeling of my leg filling up with ten pounds of excess fluid. Most of days continue to be spent with my leg elevated on three pillows, with my neck cranked to the right, watching a laptop. Thank goodness for the massive Planet Earth DVD series is all I can say (and Season 12 of South Park). And for some happy news: I'm starting to develop arms of steel, after months on crutches. And brains of steel, figuring out how to move a plate of food and a glass of water to the living room and back to the kitchen without the use of my arms (which are tied up with the crutches). To help keep the rest of me stay fit I hope to go swimming... so if anyone has a pool or a lake they can share, please let me know! And finally, check out this fantastic piece on my photography exhibit, from the Fashion Television website.

Jeff
I just saw a video of a friends wedding from September 2008, with clips of me dancing and kicking my feet into the air. It’s so weird to remember that once upon a time I was capable of walking, and doing normal people things. These were my days before crutches, giant handicap toilet seats, and morphine. It seems that my memory has blocked out my life pre-April 2009. Or more to the point, the events after April have overwhelmed my sense of what life consists of. This routine of pills and walking aids is so relentless that it’s hard to imagine a day when this will all be done. However I remember being in the hospital and it was impossible to imagine a day when I would no longer be in the hospital, and here I am today at my home, so whoo-hooo! It’s been a slightly frustrating month in that I haven’t improved at the speed that I thought I would. I am able to sit up for longer periods but my bones are still sore. I’m dealing with a stubborn case of lymphedema (which is common after radiation and surgery), but it necessitates the annoying compression stocking that my mom has to put on me everyday with rubber gloves. The doctors say this could go away in a month, or it could never go away! Fingers crossed… My neuropathy has gotten better during the day, but it can wake me up at night in shooting jolts of discomfort. It’s kind of like having your own internal electric fence, or having fireworks that explode in your foot and shoot up to your skull. My pain doctor advises that this could go away in a year, or (as above) never go away! Fingers double crossed… One thing that I will get back is my ability to walk. This week I started Physiotherapy which was very exciting. I’m starting to weight bare on the left side of my body for the first time, and I’m developing the muscles and balancing skills that we all developed as 18 month old babies. I’ve been told it could be two years to get my full ability to walk but I’m still gunning to get rid of the wheelchair / walker combo by the end of the summer. I feel very lucky to have gotten sick in the age of illegal internet downloading. I’m spending 95% of my time on my back in either the plaster cast (to prevent “foot drop”) or the compression stocking. Thank goodness for The Office, Flight Of The Conchords, Eastbound & Down, Peep Show and (dare I admit it) Celebrity Rehab. My mom has been sleeping on my couch since Day 1 and today is approximately Day 83. She wins the trooper of the year award! But we’ve decided that it’s time for the mother bird to go home and let her son make it on his own. So starting around July 1st I will need help from people – dressing, bathing, food prep, household chores, and drives to rehab… so send your best nursing resumes my way!

Jeff
I just had a busy three days of consecutive visits to Emergency at Mount Siani. The fear was a blood clot in my leg but after plenty of tests we’ve confirmed that’s not the case. My body is producing a lot of excess fluid, which starts at my pelvis and sinks down the left side of my leg causing everything to inflate like a balloon. I have to continue to lie flat and keep my leg elevated, with the hope that the edema goes back and gets reabsorbed by other parts of my body. I can’t even wear my normal underwear or socks anymore - it’s Dad’s giant pyjamas and cozy hand-knitted socks from now on. My photography exhibit ended on Sunday, I was sad to see it come down! Here’s a bit of coverage from Blog TO, and CBC’s The Scene. Thank you to everyone who helped make it such a success!

Jeff
Thank you to everyone who attended my opening night exhibition – what an amazing party!!! It couldn’t have gone better. That’s my one piece of advice for anyone getting cancer – try to think up some event or project that’s 10 times more stressful and complicated then being sick in bed, and then cancer will always be this “second” thing that takes a back seat to whatever the project you have on the go is. It worked wonders for me!!! Unfortunately my body is a wee bit pissed off for celebrating on Tuesday and has taken revenge in the form of migraines, massive swelling and a very sore tailbone area. So I’ve spent the rest of the week lying horizontal in bed, reading and watching some amazing documentaries. I haven’t had much access to the computer to get caught up on e-mails etc but hopefully later in the week I’ll start to sit up more regularly and without incident.

Jeff
Hey it's good to be back home again.

Jeff
Day 25… still hanging in at Room 1113, but so ready to bust out of here. On Sunday I had my first beverage in over 21 days: ice chips and water – more delicious then words can describe. I munched and munched on ice non-stop, it was so fun. I’m now a pro at drinking, and tonight I had my first stab at solid food. It was veggie chili -- exciting and terrifying after almost a month of not eating, but I’ll give it a thumbs up. I’ve lost 20 pounds since starting this miracle zero fluids zero food diet, how surreal. This weekend I experienced some of the worst lower back pain ever. They upped my morphine, sent me in for a CT scan and added a drain to my back to help eliminate the build up. That offered me some relief but the mystery remained as to why, suddenly after weeks of lying in bed, I was being hit with monster sacral pain. Yesterday my doctor came into my room and explained. First let me tell you about the morning of my operation one month ago. I was brought into the Operating Room at 6am after an all-nighter… it was one of the most terrifying experiences. There were so many people, I’m guessing a medical team of about sixteen all in masks and robes, prepping their shiny metallic tools like a scene out of Saw. I’m doing everything I can not to faint or be sick and my doctor comes over and starts talking about music. He says that during an eleven hour surgery, he just likes to turn up the tunes and get into the groove and he offered me a request song to put myself under to. So I’m checking out his music and realize that our tastes don’t overlap too much but I decide my tune of choice will be “Subdivisions” by Rush. And soon enough the synth power chords start pummeling through the loud speakers, the drugs take over and bam I’m out. I wake up eleven hours later and the doctor confirms that I had a successful operation. I ask him what his music soundtrack was and learn that Metallica blasted the team through most of the operation. Which brings us to yesterday where I realize that perhaps there was too much Metallica going on and not enough Enya. It turns out that they got really happy with the power tools – they took out half my sacrum as planned, but what the CT scan revealed is that they accidentally fractured the remaining piece of sacrum – hence my new pain that only revealed itself now that I’m starting to sit upright. I now have to wait another four weeks for this fracture to heal itself and the pain to subside -- damn you Metallica!!! But I couldn’t be happier because they balanced that crap news with the best news ever – I’m getting discharged on Saturday May 2nd!!!!!!

Jeff
Hello friends, I’m back!!! This past week was difficult, mainly because I wasn’t progressing at the speed that I hoped. In the first week I was healing so fast it was like watching the buds blossom on trees. But week two but was filled with little sleep and lots of puking – no longer due to cancer but due to an angry digestive system that is still pissed off at me from having to sit on ice packs outside my body for eight hours. The momentum of my recovery is starting to pick up again, fortunately. The biggest luxury has been scoring a my own room after surviving a seven day stay in ICU. It’s about triple the space, including a private bathroom. None of which is of benefit to me as I am unable to walk and I won’t be capable of sitting on a toilet anytime soon. But I can’t imagine going through what I’ve been through (crapping-the-bed-wise) and having three roommates to witness it, so I am very thankful. Perhaps the hardest challenge of my stay has been the complete lack of food and drink (17 days and counting). There’s a giant sign above my bed which says NPO (Nil Per Os… Latin for “nothing through the mouth”). It’s like an episode of Survivor here. I have never been a food obsessed person, and now I pass the days reading restaurant reviews, and making notes about all the food I’m going to have when I’m released (green-tea infused tofu as a pizza topping at Magic Oven! Peanut butter and banana waffles at the Village By The Grange! Quaker rice cakes with chocolate drizzle at Lawblaws!). I now have dreams of bottled beverages and I’ve learned that the vending machine on my floor sells Dr. Pepper for $1, and Five Alive for $1.25. It's all I think about, visualizing putting my change in and hearing the glistening bottles drop. And check out this bit cruelty: my room is located directly across from a giant ice machine. I hear it grind away 24 hours a day and listen as people fill up their jumbo cups. What I would give for a jumbo cup of ice right now. Today is Earth Day. I’m sad that this is perhaps the first Earth Day in the history of my life that I’ve spent entirely indoors. I can’t believe I am missing watching the daffodils come out. Please rub your hands in the dirt for me. It’s a healing time right now, and just like the leaves, I will be back outside before you know it!!!

Jeff
HHHoooollllllleeeeyyyy shit. This is the one week anniversary of my surgery. I had hoped that 7 to 10 days of bed rest meant newspaper at 9am, muffins at noon and trying to figure out who’s hiding the remote control for the rest of the day. Ummm, I was wrong. Bed rest means no foods and no water, except for one token “ice chip” per hour. I’m chomping away during my post-operative morphine joy, thinking “how in the world could baby ice cubes be harmful?” Two words: GastroNasal Tube. I woke up with a ballooned belly ready to explode. When you have an eleven hour pelvic surgery, they scoop out all your insides to access the target area. The plumbing and drainage won’t necessarily be aligned when they stitch you back up – that’s more a job for time and gravity – and thus my love for ice cubes has come to an abrupt end. To counteract my warp-speed bloating, a GN Tube was forced up my nose and down my throat, to vacuum out my stomach from above. It now will stay band-aided to my nose until the day I leave ICU... very similar to having a giant “L” painted on your forehead. By Thursday (three days post-op) the happy drugs were starting to wear down. I had this bizarre newfound sensitivity to smell (and subsequent gag reflex) that would make Superman jealous. I was able to smell unique hospital smells (like the detergent used in the towels) through concrete walls practically. I was also struggling to cope with the spider’s web of IV needles chaining me to my bed, and the horribly uncool decompression stockings I had to wear. It was the hardest day of my life. That's a crazy notion to be able to process, that here I am in the worst day of my life ever. Until I got to Friday to learn that no, Thursday was not the worst day of my life, that prize goes to Friday. Saturday saw a continuing trend of crap side effects (ie. a scrotum the size of a watermelon) but overall the kooky surprises are beginning to slow down. I’m one week in, and I still have yet to sit up, leave my bed, or see a window to the outside world. But I’ve stayed the course and am heading into smoother waters as we speak.

Penny, Bill and Charlie
Family Report on Jeff: Jeff wants to brag about his heart beat of 124 beats per minute and his cool scars! He is in a lot of pain, as you would expect after such a major operation, but he looks forward to less pain each day and to visitors much later in the week.

Penny and Bill
Hurray! It's all over and we're relieved that after his eleven hour operation, Jeff is awake and asking if the pictures of the operation turned out! His surgeons were pleased with their removal of the sarcoma which entailed the excision of the sciatic nerve and part of the tailbone. Your encouraging comments and prayers kept Jeff's spirits high and your thoughts today were greatly appreciated. One of The Necessities of Life is to have good friends and family and Jeff is truly blessed with both!

Update on Jeff
Hello All, Thanks for sharing your concern and for demonstrating your care for my brother. (It means a lot to Jeff and to his family!) As of 4:15pm, the first doctor had successfully completed the first stage of the operation. Phase two has begun and we'll know more @ 9:30pm this evening... We'll write a second update at that time. Thanks again for your thoughts and support - it means a great deal.

Jeff
Hello everybody, thank you for all your support. I'm rushing out the door to have my life changed forever. My family is waiting in the car and it's pouring rain outside. Goodbye, I'll see you again shortly. xoxoxooxoxox

Jeff
It's 8:30pm and I just finished all the gardening outside (in the dark, I might add). I'm zipping around taking care of all the last minute things to prepare for this journey. I had to stop eating solid foods today, so I'm extremely hungry. I have been snacking on Tums - Tropical flavour. That's not food, I don't think. And I was told I could drink "see-through" drinks, so here I sit at my computer, with a beer in one hand, and an oral laxative in the other. Someone's got to invent a name for this combination. "Sex On The Beach" it's not. Tomorrow is going to suck, 100% so I'm going to stay up all night now and appreciate every bit of time I have before this next portion of my life begins. Goodbye Mr. Sciatic Nerve.

Jeff
You know when you buy concert ticket six months earlier, like say to U2, and you are holding those tickets in your hand and you can't believe that day will actually come when you are sitting in your seats and the band is performing? I have vitamin C packets lying in a row on my kitchen counter to count down the days to my surgery. This morning I grab a vitamin C pack, and it's visually jarring because suddenly there are only five packets left on my counter. I'm thinking about how great I feel right now (despite the complex set of pills I'm taking) and I wish I could continue like this forever. My current side effects (abysmal memory recall, no sex drive, an inability to read for more then five minutes) are far more appealing then the giant scars, digestive complications, the inability to walk care-free, and a new cocktail of medicines that will be with me for my life. There's nothing I can do to stop the "Vitamin C" countdown. Time moves forward, and the bulbs are starting to come out of the ground at unbelievable rate -- little bits of greenery thrusting themselves up through the dead leaves with such unbelievable strength. I'm going to go outside and enjoy the wonders of spring.

Jeff
Today I signed the consent forms to have my rectum cut in half in case the surgery on my tumour gets complicated. There's a 50-50 chance on that happening. It would only be temporary, like three months before they stapled (yes stapled) that bit back together again. With a promise that those permanent staples would never set off airport security detectors. Phew! I have put a piece of paper up on my wall that indicates the twelve remaining days I have before surgery and I'm them counting down like a person in jail would, only in reverse. I am tempted to stay up 24 hours a day from now until then, just to savour every hour and minute of freedom, mobility, and functioning digestive system that I have right now.

Jeff
Today I have multiple hospital appointments from 7:30am - 4:30pm. The day begins with an hour long MRI (!!!) I have not been able to stay in an MRI machine for more then ten minutes without going batshit crazy from sciatic pain and claustrophobia. So this time, to prepare for the MRI to end all MRIs, I decided to stay up the entire night so that I'll be a zombie by the time I get to the hospital. I think I could count on one hand the number of times I've stayed up all night in my life. It's been party central over here! I watched Robert Altman's Nashville and season two of Extras (- hilarious!). I should do this more often. And I probably will, - I'm struck with this overwhelming sense of how precious time is. I've got ten conversations floating around in my head and I'm writing these lists everywhere... there is so much to pack in before Monday April 6th.

Jeff
I'm all done radiation. I am nicely cooked, a nice shade of brown (and flakey skin) around my pelvis. It's the opposite of a typical March Break tan when you are lobster-red on your legs and torso and then bright white under your bathing suit area. Picture that in reverse. In a weird way I miss radiation. It was this daily ritual where I would lie still and be able to think. Part of the reflection was about how bizarre and magical these invisible and destructive beams are that are being blasted through me. But I did enjoy the lying down to reflect for half an hour part. And I could tell as I looked around the waiting room each day that I was healthier and luckier then 95% of the other cancer patients. Part of me wants to get a commemorative tattoo that highlights my radiation tattoos (perhaps I connect the four dots together like a weird constellation on my body. Cancer. Get it.? Ha ha.) Life now is much more panicked then the days of my zen-like radiation treatments. When the calendar turned to March, I was actually quite sad because March is the month before April and I'm in no hurry for April 8th (my surgery) to arrive. So I'm spending the next few weeks bouncing around on two feet, enjoying walking, jumping, kicking, sitting cross legged, etc. I'm appreciating life and being free. P.S. I have submitted a camera to the OCAD Silent Auction. It's a pelvis camera and it's on up on the wall in a second floor hallway of the school (difficult to find actually) until March 13th!

Jeff
I've just completed 23 days straight of radiation, only 2 more days until I'm done. It has been exhausting, but I'm lucky that I did not have any serious side effects. My surgery has just been penciled in for April 8th, so I'm counting backwards and that's 46 days for me to run and jump around on two feet, and more importantly to function without help from others. I'm finding myself staying up extra late getting things done, and when I finally lay down for sleep, I'm super anxious and have a hard time letting go. My first thought is always "this is one less sleep until surgery" and then I get the butterflies fluttering in my chest. My brain has about ten things going on at once, so I'm constantly turning on the light, getting out of bed and adding new thoughts to one of my many lists. I've become an excellent list maker in the past few weeks, and it is extremely rewarding to be able to cross things off my lists. These lists are so important with all the drugs and anti-anxiety meds I'm on, my brain has become a bit mushy. I watched "The Necessities Of Life" last week -- excellent movie, -- and this week I saw an ad for it in the newspaper and thought to myself, that looks a movie I should go see, (despite the fact that I had just seen it). Whoops! So apologies in advance to anyone who experiences first hand my poor memory or my short attention span. Thank you for being patient with me during this exciting and scary time.

Jeff
Hi Marci, how on earth did you find my guestbook? Congrats! We are a rare species. I know that my friend who has breast cancer has access to lots of statistics and support groups. I feel like a bit of an underdog with my Peripheral Nerve Sheath Tumor. My doctors give me the impression that what we have is extremely rare, and they are kind of figuring things as they go along. I would love you to e-mail me: ( jeff at jeffharris . org ). Thanks!

Jeff
Here's what my drug shopping list looks like: Methadone $61.33, Steroids $62.26, Ativan $20.36, Nortriptyline $97.90, Gabapentin $83.71, and most importantly: Cannabis spray $165.80. That's $500 right there, and keep in mind that this medication is doing nothing whatsoever to fight the cancer inside me. The above list is for pain control only. The cost of fighting my cancer probably breaks the $100,000 mark, when you think about the four doctors I consult with, the multiple CT Scans and MRIs, the biopsy and test results, my 25 days of radiation appointments, the 12 hour surgery involving two surgeons, a team of nurses, and blood transfusions, the two week hospital stay, the following weeks of rehabilitation and the follow up visits. Before November I cost the health care system nothing, and then, surprise! I'm burning through health care money on an incomprehensible level. All I can say is thank you to my country, and thank you to you for paying your taxes. I feel very, very lucky.

Jeff
On September 15th of last year, my dental hygienist asked if I was under stress, she said my teeth had the worn down look of someone twice my age. This was a news flash to me, my teeth were normally fine. I was immediately fitted with a mouth guard to wear as often as possible (even during the work day) to prevent any permanent damage. Part of me was like, isn't this a bit extreme? Not only were the ridges of my teeth being dulled down from this recent clenching, but the spaces between my teeth were disappearing - I was compressing my teeth into one another! I’ve had two appointments since to reinforce and protect the most worn teeth, yesterday was my first visit since being diagnosed with cancer. It’s just interesting to think months back at all the tiny clues and warning signs that my body was trying to communicate to me. And it's so weird to go a dentist, get a needle into my mouth so willingly and think "needle, whatever" or even “teeth, whatever” (and shrug my shoulders).
P.S. Radiation is going fine. It’s a piece of cake in fact. Delicious cake with cute radiation nurses even.

Jeff
I just got tattooed in my pelvic region by two lovely nurses. I was expecting them to be discreet but they just flipped up my gown and tattooed away like it was no big whoop. The four markings will keep me lined up when they start five weeks of radiation on Monday. The medical term for my cancer is a "malignant peripheral nerve sheath tumour" - it's in the sciatic nerve, which will have to be removed along with any other parts of me that the sarcoma is impacting (possibly my tail bone, part of my pelvis, etc.) Losing my sciatic nerve will leave me permanently paralyzed in my left leg, below the knee. But as they pointed out, in the olden days they would just cut the leg off entirely, so this isn't anything to cry over. I'll have a plastic leg brace and I'll look super cool at the next Terry Fox Run, like a member of the brotherhood.

Jeff
The biopsy results confirmed what we all were expecting, that this is a soft tissue sarcoma coming out of my sciatic nerve. Treatment will be five weeks of radiation (five times a week), followed by a two week break, and then surgery sometime in March. No fun. What is fun however, is that I've moved up into the big leagues of pain medicine. I am now taking Methadone daily, and so all these keys on my keyboard have turned into little tiny dancing leprechauns and my computer now has a delicious waterfall of chocolate pouring out the side of it. Plus I'm featured in the National Post today! Check it out. I am not hallucinating on that one.

Jeff
I'm writing on the eve of a very big doctor's appointment. Tomorrow I will find out the results of my biopsy, and hopefully learn the plan for my surgery and recovery. Medically, these past few weeks have been about pain management. I've been trying different drugs and figuring out a formula that helps me function normally in the day and sleep soundly at night. One of the upsides of this is being prescribed Sativex (ie. liquid Cannabis!) I've never been a pot head, but boy do I love my Sativex. A couple of squirts, and it's time to watch "Harold And Kumar Go To White Castle" for the 14th time. My photo project continues to be an amusing distraction for me -- I was a guest on CBC's "Here And Now" on December 31st to talk about New Year's Resolutions. If anyone was curious as to why I sounded so calm on the air, we can thank the pain doctor for that (see above). This Thursday the 8th I will be a guest on the CBC Radio show "Q".

Jeff
I met with the PHENOMENAL Dr. Robert Buckman last night who provided some valuable insight into my cancer and most importantly put a huge smile on both my face and my parents. It's reassuring to think I have this wikipedic comedian at my fingertips - what a gift!!!
The biopsy today was a total pain in the ass, literally, not figuratively. Although I can't complain as my doctor was respectful and supportive. It's funny how you have to experience pain to really enjoy what non-pain is. Tonight I'm absolutely giddy with the fact that the biopsy is over.
There's only two weeks until the year is up, which means that I will have taken a photograph of myself every day for 10 consecutive years. I have an army of helpers seeing that I get my 10th Anniversary Photo-A-Day Project displayed sometime in 2009. Already I've been slotted in for a CBC radio interview on the show Q for January 8th, and we're working on having all 3,653 photos displayed either in New York City or Toronto sometime this spring. It's great medicine for me and such a wonderful goal to focus on, so thank you from the bottom of my heart to all of you who are pushing me along.

Jeff
The good news: test results revealed that my tumour has not spread into other parts of my body.
The frustrating news: surgery is not until late January or early February. It's a complex operation (10-12 hours!!!) involving two specialists and they need more time to prepare. This is the reality of having two different surgeons with two separate schedules to coordinate. My tumour appears to be slow growing, and so the waiting period is not a huge concern, but mentally it's hard. My doctor has increased my pain medication which should allow me to feel better during the next while.
And the bad news: before I had my CT scan I asked the technician if I could take photos, and she said "No problem, the radiation won't hurt your camera." Well, she lied. Or perhaps didn't realize that I was using film, and now a whole roll of photos is damaged. Lesson learned. I'll bring a protective lead case next time.

Jeff
My doctor has given me a list of 7 tasks I need to complete by December 9th... it's kind of like the Amazing Race, only instead of taking place across airports and cities it just takes place at Princess Margaret Hospital. I've completed the blood work, and I've started on new medication. Next week I'm meeting my orthopedic surgeon, starting radiation, having a biopsy, and getting a CT scan to make sure the cancer hasn't spread up into my chest or liver. The surgery will not be until early January, because it's not as simple as I had hoped. My doctor will be presenting my case at a Sarcoma Tumour Board on December 1st. My surgery will be in two parts - a general surgeon will take out the portion that impacts my retroperitoneal structures (Wikipedia is my new best friend) and an orthopedic surgeon will deal with the tumor as it connects to my sciatic nerve & spine. I'm disappointed that surgery is weeks away, but also thrilled that I can have some quiet time to prepare. I'm very fatigued, and I'd like to get my sleep back on track and feel stronger before January comes. Thank you everyone for posting on my guestbook, I'm really happy to hear from you all, it brings a smile to my day!

Jeff
"Is that a tumour in your pocket, or are you just happy to see me?" Well, both actually. Thank you for visiting my website! As for the tumour, on Friday November 14th, my doctor discovered a 12x10 cm pelvic mass, likely a soft tissue sarcoma, extending through my sciatic notch outside my pelvis. I will be having an operation to get it out of me soon, and then we will determine what else (if anything) needs to be done. I will post updates as news unfolds.