Could I handle dex?  Would I ever be standing tall again without pain?   Could such a new drug as Velcade restore my bone marrow to health?  How about the side effects?

These were the unanswered questions of my universe in the early autumn of 2009.

During that time, my family and I all became very familiar with the cancer center.  Lovely artwork, all donated or on loan, brightened the walls of the hallways.  Volunteers served tea in bone china teacups and biscuits every afternoon to the patients.  Staff were friendly, and a daily riddle was posted at the unit’s clerk station. ’Chemo brain’ or not, I could rarely figure it out!

It was a busy, bustling place, but some of the waiting patients looked tense and sad. We probably looked that way too.

Being ushered to a reclining chair and having an IV inserted into my hand soon became a familiar procedure for me.  The chemo nurses always wore heavy purple synthetic gloves to prevent ‘needle stick’ injuries, a nurse’s nightmare because it requires testing for hepatitis, HIV, and other diseases as a result of a small pinprick.

Some of the treatment cubicles were near a window, which I really appreciated because it gave view to the beautiful Bow River Valley.  The leaves of the aspens were turning a lovely gold color, and the river gleamed an intense shade of blue.  It was a very serene sight and made the whole treatment process easier for me.  I could reflect on the fact that I had enjoyed many wonderful walks and bike rides in that area, in all seasons.

That fall, I spent most of my time between doctor appointments and twice-weekly Velcade (bortezomib) infusions at home.  Participating in the usual activities, such as working out at the gym, hiking, gardening, singing in my choir, attending meetings of the needlework guild, or travelling, either near or far, was not possible.  I only managed to keep up with some work at home, which took a lot of concentration, considering the medications I was taking.  Otherwise, I found myself talking to visitors who came by, reading, doing crafts, and occasionally venturing out to a nearby mall.

The effects of dexamethasone (Decadron) were intensifying.

I found myself blurting out details of my struggles to anyone who would listen.  Once at a mall, I was drawn to a kiosk of jewelry, convinced that turquoise was a healing stone.  I wanted to buy up the entire lot of that stone set in silver but fortunately I didn’t. Instead, I bought a heavy strand of the beads later when the effects of dex had worn off.

I sewed many wall hangings during that time.  One design, called ‘Blowin’ in the Wind’, showed a picture of kites with long strings,  That design particularly suited my mood:  I felt like I was just being blown around by the winds of fate, with no answers.  Another design, sea turtles swimming on a very turquoise fabric sea, reminded me of snorkeling over a coral reef.  One of my sisters recalls it as ‘turtles on steroids’ because I was under the influence of steroids when I was sewing it.

I also was fascinated by the ancient Etruscan goddess Minerva, patroness of medicine, music,and crafts.  The owl was sacred to her, so I put an ornament of an owl in our garden.

At that time, I was also terrified of catching the H1N1 virus, which was circulating in the east of the country and expected to arrive in Calgary at any time. My mind wandered in many directions, quite un-tethered.

It wasn’t the best of times, but my friends and family continued to rally around me, and it was their good feelings and the cheerful medical staff that got me through it all.

I received hand-knitted ‘prayer shawls’ from members of two different churches.  I wrapped myself up in them while watching TV.  We watched a lot of movies at home that fall!  My husband’s sister flew in from Connecticut for a few days, which was very heartening for both of us.  It is not easy being a caregiver, and my husband Dilip was going all out in this role.

We had two interesting events occur that fall that related to our new preoccupation of myeloma.

The first was a myeloma conference that we attended at a downtown hotel here in Calgary. It was organized by the Southern Alberta Myeloma Patient Society in cooperation with Myeloma Canada.  The conference included scientific talks on myeloma given by hematological oncologists and workshops for myeloma patients and caregivers. The event was a huge success; it was sold out and hundreds of people attended from all over western Canada.  I talked with many people about their experiences with myeloma.  It was interesting but also sobering to hear their stories.

Another nice event was one that my daughters and their friends organized. They got a team together to participate in the ‘Light the Night’ walk by the Leukemia and Lymphoma Society.  They were carrying red and white balloons which had little lights attached that twinkled in the twilight.  We attended the evening walk/run with these terrific young people and were touched by the outpouring of love and support.

With regard to my treatment, I received Velcade twice a week for two weeks, followed by a week off.

By the sixth treatment, my blood protein levels had fallen significantly.  By the tenth treatment, my monoclonal protein level was at 6.4 g/L – it had been at 59 g/L in July.  After 14 treatments, it was at 3.3 g/L (or 0.33 g/dL, the units commonly used in the States when measuring a patient's M-spike).

This was very good news.  I was sure that I could feel the ‘tumor burden’ lifting away, as though a heavy curtain that had been occluding my thoughts was being pulled back.

By the last treatment, number 16, there was no doubt that I felt a lot better.  My protein levels had fallen by over 90 percent.  My bone marrow had been 50 percent full of tumor cells at the time of diagnosis, and I am sure that it had been dragging me down both physically and mentally to have to try to cope with that amount of diseased cells.

I did experience some neuropathy towards the end of the four Velcade treatment cycles; it came as a feeling of pins and needles in my feet.

Although afraid of the whole process, I decided to stay the entire course of treatment and undergo a stem cell transplant because I wanted to delay the possibility of a relapse.   This was what my oncologist recommended, and so far his advice had been excellent.  My next hurdle would be the stem cell transplant.

In my mind, I hailed Velcade as a real wonder drug.  No wonder the three scientists who had discovered the biological processes behind it had won the Nobel Prize for Chemistry in 2004!

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The quotation for this month is from Pythagoras (c. 570 BC - c. 495 BC), who wrote, "Above the cloud with its shadow is the star with its light."