Lucky Me!

20141013_083943Two weeks and seven treatments down, but more importantly, a few hours until Olivia and Stella arrive!  I am so looking forward to seeing them and to a weekend of seeing Seattle, being tourists, going to the farmers’ markets, walking, and not being radiated!  Not that the radiation has been difficult.  It is time consuming and awkward but the side effects have been minimal.  I can feel a slight sunburn and I am feeling tired, really tired.  I slept 14 hours on Thursday, which isn’t a bad thing, although it was a strange, restless, dream filled sleep, and I was visited for the second time by my bus incident of Tuesday.  I am beginning to wonder if this was a dream to begin with. Continue reading

Rain in Movember

Four treatments down, almost ten per cent of the way.  When I put it that way it doesn’t seem like very much, it sounds like I have just started, which is odd because after my treatment yesterday it felt like this is part of my routine; like I have been doing this for a long time.  Perhaps all of the planning, the preparation, the diagnostics and the anticipation have made it seem like I have been at this for a while.  I have thirty seven more to go; another in a few hours.  I think it is 37.  I have an appointment with Dr. Tseng today to sort out the photon plan and to review the proton regime to date.  I hope the photon portion completely replaces proton treatments and does not add any.  It will be good to get the overall plan, find out when we add photon, how that integrates with proton therapy, and determine dosage. Continue reading

Welcome to Seattle

Welcome to the next phase of my journey.  I’m in Seattle and undergoing radiation.  This week has been busy, emotional and exhausting, and I’ve been carried through it by the support I have received from family, friends, health care professionals and strangers.  I am two treatments in now and counting down the days until I am finished.  It looks like December 30th will be my end date, and now that we have turned over into November it doesn’t seem that far away.  I have added a countdown calendar to this site so that I can watch the days tick off until I go home. Continue reading

My Science Fiction Radiation Vacation

Our “science fiction radiation vacation”; that is how my wife characterized our very short trip to see the ProCure proton therapy centre in Seattle last weekend. It was short, with a whole lot of driving; 14 out of the 36 hours in the car. We arrived just as the Cowboys defeated the Seahawks, so we walked around Pike Place Market and the piers with a lot of disappointed Seahawks fans and a very few jubilant Texans. Continue reading

Calling a proton

It’s happening. I head to Seattle in a few hours. I have a consultation on Monday morning with Dr. Yolanda Tseng, a Radiation Oncologist at the ProCure Proton Therapy Center. The center is part of the Seattle Cancer Care Alliance, the largest cancer treatment center in the Pacific Northwest, and has opened recently, making it one of about 15 in the US. There are none in Canada, which is unfortunate, but Seattle is a heck of a lot closer (about a six hour drive) than either Loma Linda (San Francisco) or Boston, which were the two options we had at the start of this. Continue reading

Waiting for Seattle to call

I am literally sitting by my phone, willing it to ring. I am stressed. If ever I needed to be present and mindful it is now, and instead I’m living entirely in the future. I am stressed about not hearing from the cancer center in Seattle, stressed that they might not be able to do this, worried about them not getting the information that they need from my surgeon, stressed that this won’t start on time, stressed about the cost and of going three more months without an income. I’m sitting here stressed over things I have no control over. When I am not worried about things I have no control over, I’m fantasizing about being done radiation, about it being over, about being cancer free. So, I’m spending all of my time either worrying about the next three months, or skipping over them to the end of 2014. I have my life “on hold” until 2015. Continue reading

Seattle

I intended for this post to be about the past; how I got to today, how my tumor was discovered, and my subsequent surgery and recovery. I will get to those, but what is important to me right now is the future, not the past. I am about to enter radiation treatment to eliminate any trace of the cancer.

The Seattle Cancer Care Alliance (SCCA) has opened a proton beam therapy clinic and I received notice on Thursday that the province will fund my treatment there. On Friday evening I received my acceptance package from SCCA, after they were closed for the weekend. I will call them first thing Monday morning and get this started. This is the last hurdle. I need to embrace this and become cancer free.

Okay, I have it – what is chordoma?!?

I was told that I have chordoma by a surgeon in the hospital. In the six months of tests and explorations prior to surgery it had never been mentioned as a possibility – it was completely new to me. The surgeon was not an expert in cancer and could tell me little more than that it was very rare (20 or 30 a year in Canada) and that the tumor had consumed most of my L5 vertebrae. He shared that chordomas are cancerous tumors that grow on the bones of the skull and spine and his understanding was that they don’t easily metastasize. He told me he was referring me to a surgeon in Vancouver who had experience with chordoma removal and that my care would be transferred there.

That was my introduction to chordoma. I began to process the information that I had a rare cancer early in the morning while I was in a recovery ward on morphine. I did what anyone else would do when faced with limited resources; I used my smartphone to google “chordoma”. The site that was listed first promised “Chordoma at 38% off”. This seemed odd, and likely not helpful. The next two sites highlighted “Chordoma – survival rates!” Quick glances showed that the survival rate after diagnoses was either 6 or 7 years. This was not encouraging, but of course was also entirely without context – survival rate from what point? I tried not to think about that and looked further down the list. I found a link to the Chordoma Foundation (www.chordomafoundation.org) and began to get some good, easy to read information. The Foundation is an excellent resource for anyone diagnosed with chordoma or who knows someone with it. It was a great place to begin to learn about this disease. In addition to great information, the foundation raises funds for research, organizes some clinical studies and provides resources for those with chordoma.

After leaving the hospital, my wife had spent the night researching chordoma. One of her first lessons was in how poorly understood chordoma is. As she was leaving the ward after being told by the surgeon that they had found a chordoma, she ran into an acquaintance at the elevators. He is a highly trained health care provider at the hospital and asked how the surgery had gone. When Olivia told him about the diagnosis he replied, “Oh, that’s great – that’s benign”. He is a well-respected professional so she trusted him and shared this with a few other people before she got on line and realize that that it was wrong. We subsequently read and were told many things about chordoma that are inaccurate or just false. It took us some time to find sources of trustworthy information. In addition to excellent information from the Chordoma Foundation, and the National Organization for Rare Diseases (http://rarediseases.org/rare-disease-information/rare-diseases/byID/1142/viewAbstract), she came across a private (closed) Facebook page for Chordoma survivors and their caregivers. Olivia was on it for a month before I joined. I wish I had done so earlier. I have been absolutely amazed at what a great resource it is and how supportive it can be for anyone dealing with this cancer. It has about a thousand members and I spend some time every day engaged with it.

As I try to understand the evolving science regarding chordoma, I have learned that it is a rare and aggressive cancer that can present as many other things. It is often misdiagnosed as a brain or bone tumor and then incorrectly treated. If not properly managed it can metastasize or impact nerves or brain tissue. It is critical to find a doctor who understands and has experience with chordoma or similar sarcomas. In my case this meant that most of my care to date has taken place in Vancouver (about a five hour drive from home) and for the next phase (proton beam radiation) I will need to travel to the United States for a few months. It is a highly specialized field and it is critical to get the right care.

I know that I will defeat this disease and I want to share my journey of managing chordoma through this blog.