On the weekend, my friend Derek Miller wrote a very personal blogpost. He stated that his personal battles with cancer had taken a turn for the worse, he was no longer responding to treatment, and his doctor didn’t expect he’d be alive in 2 years. I have always respected his frank and open discussions about living with cancer.
Those that know me, I’m a pretty private person, however after seeing this tweet from Derek I realised that it was time to shed light on my health struggles beyond my immediate friendship circle.
THE PAST
“You’ve been diagnosed with Multiple Myeloma”
I could feel something was wrong with me. It was Fall 2005 and I had been feeling exhausted for a while. My concentration was failing, but I kept putting off seeing the doctor, because I don’t get sick and didn’t have time to make an appointment. Just before Christmas I went to the clinic and explained my situation. She thought maybe it was just stress, but suggested that I take a blood test, just in case.
When I went back at the beginning of January 2006, I met a different doctor. The blood test showed that I had anemia. He was very curious as to why the initial tests didn’t show a cause so he ordered more blood tests as well as a urine test. These second set of tests didn’t show the reason either. However, I was found to be low in protein though which was worrying for the doctor as I eat lots of meat (pretty much every meal). I wasn’t showing I had diabetes nor any thyroid problem. So he had more tests done for blood and 24 hours urine test. I also had chest X-rays and I was given requisitions to have additional radiation tests (I think liver and where I drink something that glows in my body). I guess I should have tuned in that something was very wrong with me.
When I next spoke to the doctor, he told me that I had Multiple Myeloma, in the early stages. I had no idea what that was and he explained it is a type of blood cancer meaning that my plasma cells are producing an abnormal amounts of protein (4X normal levels). I was a little shocked because I never thought this would happen to me, I don’t smoke so getting cancer seemed as likely as getting hit by a car in my kitchen. I had an appointment with a cancer specialist that next day. He confirmed the findings of Multiple Myeloma (based on my previous tests). I learned that this was not something that could be treated with an operation as it was in my bones not a body part.
That day I also had a skeletal survey (took x-rays of my whole body for about 30 minutes) and he ordered a bone marrow test the next day, so they could be 100% right rather than 99%. That was the first of 3 bone marrow test that I’ve now had in my life. I had no idea what would happen the first time. I can honestly say I have never been so scared in my life, because I had heard it was painful, knew it involved needles (which I don’t like) taking something out of my bones.
What I did not do was Google “bone marrow test”. I felt that not knowing what was actually involved was better. I arrived early that morning at the hospital, signed some forms, and then lay on a hospital bed with my hip area exposed. Basically, the process involved getting bone marrow from my hip bone. If you like, you can read up here. They hide the needles from me and initially they froze the area they would be working on. I was so worried that something would go wrong. The test seemed to go on forever. About a week later I learned the extend of my illness and it was decided that there would be 2 phases of chemotherapy treatment, with the objective of reducing to zero my cancer levels. My initial protein level was 42grams/L when diagnosed, quite high.
Phase I would begin immediately called Induction. Basically I took oral dexamethasone for about 3 months that were designed to reduce the number of cancer cells leading up to the bone marrow transplant in Phase II. I really hate being on dexamethasone because it makes you very hungry so I was eating lots, gaining weight, and my face looked very chubby. It also resulted in mood swings.
In addition, in April of that year, I was giving a drug called Disodium pamidronate (Aredia) to help keep my bones strong as there can be bone pain and weakened bone structure with Multiple Myeloma. Red and sore eyes (conjunctivitis) are one of the possible side effects. What I have learned about cancer is that random things will happen to you that you never thought possible (this will become a recurring theme).
So one morning in April 2006, I woke up and my eyes were red and watery. I could not look at any light. I mean that looking at my cellphone was really painful. I went to ER and was diagnosed with viral conjunctivitis. I went to the clinic the next day to get a second opinion wearing sunglasses and spoke to a doctor there. She saw my eyes were very red and after sending me home, contacted me to say they had decided to call around and had set up an appointment with an eye specialist for me for the next day. It was almost the Easter Holiday weekend and the doctor felt that this needed to be looked at by specialists immediately. The next day that specialist looked at my eyes and decided that what I needed was to see another specialist immediately with ocular inflammation expertise. This led to subsequent photographs, blood tests, a chest x-ray, and an ultrasound and it was determined that there wasn’t permanent eye damage but that I had an ocular inflammation and was given eye drops for treatment. The drops I was given were successful in reducing the ocular inflammation on my eyes, but as they were a form of steroids, something more troubling occurred. They began to increase the pressure on my eyes such that I began to see everything as a white haze in the daytime. Pressure on my eyes had increased by 40%, which happens in 20% of the cases. I then began seeing a glaucoma specialist as there were concerns I might go blind.
So, while my eyes were being treated, I finished Phase I of my cancer treatment and moved into Phase II for the summer. Part I involved high dose chemotherapy and a stem cell transplant and autologous treatment in which one’s own stem cells are taken out and frozen, chemo is then given and the stem cells are replaced. These stem cells are collected and frozen to be put back into body as backup following chemo. There are good cells that will regenerate the white blood cells and platelet cells. However, there may be Myeloma cells mixed in with my stem cells. So although, it can improve my overall survival rate, it is not curable because the disease will come back and will relapse in a year or a few years.
In early June 2006, I began intravenous treatment to produce extra stem cells, with injections, and then one week later I went to the hospital so that the stem cells could be collected from my blood. It was a 3-4 hour procedure and the stem cells were frozen to be used later. I had high-dose chemo and a day later my stem cell infusion occurred as a back up for my immune system. I also had an operation to get a Hickman Line added to make it easy to give medication and withdraw blood. During that time, I was pretty much out of commission, I was still registered in school and was doing some light readings but I wasn’t able to work, and really felt awful during that time. The out-patient treatment reduced my cancer levels somewhat, but in Spring 2007 I went through the procedure again. I received high dosage of chemo and a stem cell infusion.
These two procedures had a significant effect in reducing my cancer levels and for a period of time, I felt great. However, a year later my levels began to rise. In August 2008, I began taking Revlimid and dexamethasone again. Revlimid is a pretty powerful drug and looking back I still have no idea how I finished my Masters degree that year. It was quite a challenge as I was tired often from the side effect. Cancer + treatment = tough trek in grad school.
On Dec 4th, after being on Revlimid for about 14 months and now doing a PhD, I began to have severe headaches and my vision was affected such that everything had a white haze over it, making it difficult to see. I thought maybe it was related to glaucoma. On December 8th, I had an appointment with my glaucoma specialist, who had me do a field test for vision. During the field test, I passed out and subsequently ended up in the ER. Blood tests and a CAT scan revealed that I had had a stroke that previous weekend in the area of my brain responsible for vision. In addition, I also was diagnosed with TTP – a rare condition in which my red blood cells eat each other. It occurs only 4-5 times a year in my province of British Columbia. The rate of death for untreated TTP is very high. When I was tested in the ER, my blood platelet levels were 4. Normal is between 150-300. As that meant that I could bleed to death with a cut, I was immediately admitted. I was very, very fortunate that day. When I passed out I banged my lip on the field test equipment and table and was lying on the floor with a cut lip and unconscious when found by the attendant. She had gone to get water at my request as I felt like I would throw up.
I spend the next 12 days in hospital receiving treatment for my TTP by a hematology team while a neurology team tried to determined why the stroke happened and the extend of the damage to my brain through vision tests, MRI, CAT scan, ECG. This was my first time staying overnight in a hospital. There is only 1 hospital in British Columbia that treats TTP so I was fortunate that I had been sent to ER there. I was treated by being hooked up to a machine that, like an oil change, removed my bad blood plasma and gave me donor blood plasma. A central line was inserted into my chest to facilitate this process. Each day through this treatment, my blood platelet counts rose. They then stopped treatment to see if my blood platelet counts would rise by themselves. I remember my final day in the hospital. The previous day my blood platelet counts had actually gone down, which was not good because if it happened a second day, then I would have been in hospital for a longer period of time. When my hematology specialist came in to see me, I figured he was going to give me bad news. Instead he had come to remove my central line. I have alot of respect for what nurses have to go through. Basically there are alot of unhappy people in hospital, and I was very lucky that so many friends visited me even though I was in hospital during exams. I really learned the value of friendship during that time.
For about 5 months I was seeing a neuro-opthamologist to ensure the damage from my stroke wasn’t permanent. Thankfully, any damage was temporary, although I will never drive again. I continue to see my glaucoma specialist regularly and my pressure level are low and stable. I feel very fortunate to be living in British Columbia as I have received exceptional treatment here.
The Present
Living on a hockey stick
When I was admitted to the ER last December, I was taken off my cancer medication as it was unknown whether it caused the TTP. I haven’t been put back on any treatment as I’m doing a PhD and being on drugs makes it very difficult to really do anything. The downside is that my cancer levels have slowly been rising, although at this moment they are stable, but relatively high. I’ve learned that having cancer is like living on a hockey stick. I’m somewhere along that horizontal plane, someday my cancer levels will spike, the unknown is when.
So I see myself as living in the eye of a hurricane. I get really tired sometimes and my concentration isn’t the best as I still have Anemia, but overall life is good. I’m progressing with my dissertation and focused on being positive and happy, because I think that will keep my levels stable. I could get stressed about alot of stuff, but that won’t do much good. This can’t last forever though, eventually my cancer levels will rise – ideally it’ll happen post-defense (few years away), but that may be a bit optimistic.
What I do realise is that because I have cancer and really don’t know how much longer I’ll be alive or what condition I’ll be in next week/month/year, I try and maximise life moments when hanging with close friends or meeting someone new. Doing a PhD I don’t have much free time as everything takes much longer than expected, so it is unusual when I meet someone beyond my campus. For me, what’s toughest are the effects that treatment has on my mind and body. When I was on Revlimid and dexamethasone for 15 months, I was working out regularly, yet it still looked like I was out of shape. In addition, I’m sure that my memory is alot worse. I know that my recognition of faces and remembering names is really bad if I don’t see someone on a regular basis. Also, I don’t think long term – I don’t have illusions of retiring in the Grand Cayman Islands at 55. Instead, I’m happy each day that I wake up in my own bed and can go through the day without feeling overly tired or sick while making progress on my dissertation.
How can you help?
Emotional
If you see me, just give me a hug or a high-five and say something like “Good luck with your dissertation”, or “Have a great day”. That will go a long way, especially if I’m not feeling so hot.
Financial
If I was to win the lottery I would set up grants for students that get a terminal illness while in college or university, because it lengthens your education significantly, makes it more difficult to focus on your material, makes it much harder concentrate at a job, and puts you into personal debt. Getting cancer hurts you financially, especially when you’re a student that is largely self-funded.
If anyone wants to help fund my dissertation, it would be absolutely amazing. Or if anyone knows someone that could help me out, let me know.
Thanks for staying to the end.
Martin Laurendeau, Kavie Toor, Gavin Ziv
Doug Mitchell Thunderbird Sports Centre
Kavie Toor – Associate Director, UBC Athletics and Recreation
Martin Laurendeau – Miele Canadian Davis Cup team captain
Vasek Pospisil via video conference from Champagne, Illinois event
Grant Connell – Retired Davis Cup veteran and honorary chairman
