Living with cancer since 2006: My health update

So, I haven’t blogged in forever. I’m redesigning the focus of my blog and I thought that it is important to begin with an update on my health beginning with my 2006 cancer diagnosis.  This has been an eye-opening experience as I look back and I’m kinda amazed I’m still doing this on my own.

Before my hair fell out
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, 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 another 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.

You have Multiple Myeloma
When I next spoke to the doctor, he told me that I had Multiple Myeloma and that it was in the early stages. I had no idea what that was and he explained that it is a type of blood cancer meaning that my plasma cells were 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 struck by space junk 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 (an x-ray of my entire 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 and only 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 (or how big the needles were) 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 covered the needles so that I wouldn’t get freaked out and initially 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 extent 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 (igG) was 42grams/L when diagnosed, quite high.

No turning back
Phase I which was called Induction began immediately. Basically I took oral dexamethasone for about 3 months which were designed to reduce the number of cancer cells leading up to the bone marrow transplant in Phase II. I really hated being on dexamethasone because it makes you very hungry so I was spending money on food I didn’t have so I gained alot of weight, had a cubby face and struggled with mood swings.

What’s wrong with my eyes?
In April 2006, I was giving a drug called Disodium pamidronate (Aredia) to help keep my bones strong as bone pain and weakened bone structure is one side effect of Multiple Myeloma. Red and sore eyes (conjunctivitis) are one of the possible pamidronate side effects. What I have learned about cancer is that random things will happen to you that you never thought possible (this has become a recurring theme in my post-diagnosis life, so I don’t get surprised anymore). As it happens, one morning shortly after I woke up and my eyes were red and watery. I could not look at any light.  Simply looking at my cellphone was really painful.  I went to the 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 that she had decided to call around and had set up an appointment with an eye specialist for me for the next day. It was the Tuesday before the Easter Holiday weekend and the doctor felt that this needed to be looked at by a specialist immediately. The next day that specialist looked at my eyes and decided that what I needed was to see a glaucoma specialist immediately with ocular inflammation expertise. This led to subsequent photographs, blood tests, a chest x-ray, and an ultrasound. It was determined that there wasn’t permanent eye damage but rather that I had an ocular inflammation.

I was given eye drops for treatment. These drops 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. I later learned that pressure on my eyes had increased by 40%, which happens in 20% of the cases. I then began seeing this 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 my body as backup following chemo. There were good cells that would regenerate the white blood cells and platelet cells. However, there might 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 remember watching the World Cup as I sat in a chair with a long needle in my arm.  

After received a high dose of chemo, a day and a half later, my stem cell infusion occurred as a back up for my immune system.  In addition, I had an operation to get a Hickman Line added to make it easier for me to receive medication and for blood to be withdrawn. During that time, I was pretty much out of commission, I was still registered in school f/t and tried to do some light readings but I wasn’t leaving my bed accept for treatment. It was not a good time I felt pretty awful.  The out-patient treatment reduced my cancer levels somewhat, but in Spring 2007 I went through the procedure again. I received high doses 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, worked out regularly and was feeling on top of the world. Unfortunately, all good things must come to an end.

Heather Pavilion - Vancouver General Hospital
Outpatient chemo treatment location

Cancer drugs: the sequel
A year later my levels began to rise. After discussion with my Specialist, in August 2008, I began taking Revlimid (for the first time) and dexamethasone (for the 3rd time). 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 and somedays I didn’t see the sun as I didn’t leave my bed. Cancer + treatment = tough trek in grad school.

You suffered a stroke
On Dec 4th, 2009, after being on Revlimid for about 14 months and now in my first year of a doctorate degree, 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 as it was happening sporadically. On December 7th, I set up an emergency appointment with my glaucoma specialist for the next day. He didn’t observe increased pressure on my eyes so he had me do a field test for vision for further analysis. I passed out during this test and when I tried to get up I was cautioned to wait for the paramedics who subsequently took me to the VGH ER as a precautionary measure.

SITA Visual Field Machine
SITA Visual Field Machine

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 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 extent of the damage to my brain through manual vision tests, MRI, CAT scan, and an ECG. This was my first time staying overnight in a hospital – spent in the ER while they tried to locate a bed.

There is only one hospital in British Columbia that treats TTP so I was fortunate that I had been sent to the 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 had to start over again with my dosage thus extending my hospital stay. 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 people in the medical profession 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 Christmas exams. I really learned the value of friendship during that time.

So that’s what a neuro-opthamologist does
When I was discharged I was required to see a neuro-opthamologist. That is a doctor that specialises in diseases related to visual problems of the nervous system. As I had a stroke in my visual field area I was required to see him to assess the extent of the damage and whether my eyes would improve. So, at this time I was seeing two eye specialists as I still had regular appointments (every 6 months I believe) with my glaucoma specialist. Over five months I had three appointments with my neuro-opthamologist. Each time my eyes were checked with a machine, I had to a colour perception test, and an eye chart test. During that period my eyes were photographed once and I completed a visual field test. Thankfully, any damage was temporary, although I will never drive again. I feel very fortunate to be living in British Columbia as I have received exceptional treatment here.

Let’s stay off treatment at this time
When I was admitted to the ER December 2009, I was taken off my cancer medication as it was unknown whether these drugs contributed to my TTP. I remain off cancer drugs at this time. 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. After discussion with my specialist I decided in Summer 2011 I would stay off any cancer treatment until it was absolutely necessary. As I am single and have to take care of my myself, being on cancer drugs make life really difficult mentally and physically and I didn’t have any sort of safety net if I dropped out of my PhD program to do treatment. Instead I focused on staying positive and hoped that the side effects of cancer wouldn’t be that problematic.

It hasn’t been all unicorns and rainbows living with cancer. As you might imagine my igG levels have continued to rise. 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.

My SuperBetter experience
One of the positive aspects of my life occurred in Spring 2012 when I was asked to be a SuperBetter all-star. SuperBetter is an alternate reality game designed to build personal resilience to difficult challenges such as cancer. I called myself “Phillip the Cancer Conductor” and noted that I would control my cancer levels by taking a daily creative self-portrait until September 1st.  On Day 89 of the SuperBetter project, I had my quarterly cancer specialist appointment. Over the last year these appointments had been quite stressful as I would sit in the waiting room with my mind playing games wondering how high my cancer levels might be. Happily, this day would end with good news.

During my appointment at the end of February, my levels were:

  • igG 40.1
  • Beta II fraction 39.9
  • Hemoglobin 121
  • White blood cells 2.0
And in June 2012:
  • igG 35.9
  • Beta II fraction 35.4
  • Hemoglobin 121
  • White blood cells 2.3

35.9 igG - My cancer levels actually went down
Cancer levels went down!

Yes, I was ecstatic that my levels actually dropped. My specialist was pleasantly surprised, however I knew the reason for my success – SuperBetter.

How did I benefit from the SuperBetter game?  It gave me a sense of purpose outside of my dissertation to focus on a task where I could quantitatively monitor my progression (the taking and uploading of creative self-portraits to the SuperBetter site) and it provided qualitative value as I was able to observe through the timeline of self-portraits how I had improved creativity in my photography.

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Reflecting on the past, hopeful for my future
Earlier this month I had another visual field test for my September glaucoma specialist appointment. Medical tests and specialist appointments are just part of my routine and I felt great. I see myself as living in the eye of a hurricane. Some days I get really tired and my concentration isn’t the best as I still have Anemia.

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. It does amaze me that I have been living with cancer for 6+ years. I really thought I wouldn’t make it past 2 or 3.  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 interacting with a new friend.

For me, what’s toughest are the effects that treatment had on my mind and body. 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. 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.

I’m focused on remaining positive about my future and I’m concentrating on completing my PhD.  Cancer has changed me in many ways (both visible and hidden) but I’m not about to let it defeat me.

UBC - A Place of Mind

About tyfn

From December 2019 I've been on Darzalex (daratumumab) IV chemo with Velcade (Bortezomib) injection chemo + dexamethasone. Have Multiple Myeloma + anemia, a rare incurable cancer of the immune system. Life goal: To spread awareness about Multiple Myeloma through my self-portraits. UBC MSc Grad.
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15 Responses to Living with cancer since 2006: My health update

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  14. Melissa says:

    I am so happy to have found your blog again! Your blog was a source of inspiration when I was first diagnosed in 2013! It is going to be 6 years since that time and it looks like my levels are rising again (this is not the first time). I also get tired from the Revlimid and feel like my memory is challenged after so many years of treatments. But, like you, I choose to live my best life. It is just so nice to be able to connect with someone who is sharing the same journey. Thank you so much for sharing. It means so much.

    • tyfn says:

      Hi Melissa,

      Thank you so much for your kind words. MM is an ongoing journey with many life challenges due to the various chemo in our body. My memory is pretty brutal too and I’m really bad with recognizing faces of people I just met or haven’t seen for a while. Sending you lots of positive healing energy. Stay Strong! Loving life!

      Phillip

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