Living with multiple myeloma: My cancer levels have spiked

Waiting for a blood testJuly 2014: Waiting for my blood test

In October I was told by my Hematologist that my multiple myeloma + anemia had returned. During that appointment I learned that since July, my cancer levels had been gradually increasing. Last month, the blood test revealed that my level continued to rise. There have been challenges this Fall as my cognitive abilities have been eroded. Concentration, focus, remembering, and thinking is much more difficult. Conversations can be mentally draining. Writing a blogpost takes much longer than expected. Trying to follow storylines in a book or tv show can cause confusion.

Last week I had my blood test and I was able to view the results the next day online through a free service called myehealth, that is available here in British Columbia. During my October Hematologist appointment, I was told that if my cancer levels spiked or if I experienced bone pain, then the next appointment would result in a discussion about chemo options. Sadly, my cancer levels have spiked. With multiple myeloma being a cancer of the blood plasma, it is in my bloodstream, rather than concentrated in one particular area.

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta 2 Globulin Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
Dec 42.4 17.9 5.1 24.3 .33 .38
Nov 41.3 11.8 5.5 16.9 .37 .36
Oct 46.2 9.5 6.4 14.8 .39 .27
Sept 45.1 6.2 7.1 12.8 .36 .21
July 45.9 4.9 6.9 10.8 .34 .25
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 3.5 5.1 7.1 .14 .10

Test comment: There is a monoclonal band (approx. 9 g/L) in the beta 2 region. This band was previously identified as IgM lambda.

The igG is the general marker used to measure cancer levels in multiple myeloma. For me, my multiple myeloma resides in the Beta 2 globulin region, in others it lies in the Gamma Globulin. That’s why you can see my Beta 2 mirroring my igG outside of the normal range, while my Gamma Globulin remains within it.

In November 2013 following 9 months of chemo I thought I would have 3-5 years before I would have to concern myself with chemo. In October I thought I would have 1-2 years without needing to worry about treatment. Now I’m facing the reality that chemo may begin in February with the details being finalized during my January Hematologist appointment.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Dec 3.8 128 235 1.9
Nov 2.7 130 265 1.3
Oct 4.1 139 305 2.1
Sept 3.7 135 241 1.8
July 2.9 133 247 1.4
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

I’m focused on staying positive and making sure I’m adequately prepared for whatever comes my way in 2015. Chemo side effects won’t be easy, but I’m confident with the help of my friends, I will get through the dark days.

Although at the moment I don’t have a macbookpro for my photography and my camera is on its last legs, I view my upcoming chemo as an opportunity to continue to share knowledge about multiple myeloma to other patients, caregivers, and anyone touched by this disease. I will do my best to document my chemo like I previously did in 2013 using photography and social media. I also have a personal project I want to pursue called Cancer Sabbatical once my circumstances improve.

To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient.

I love photography and use it for personal health and healing. You can view my photos on Pinterest.

Lonsdale Quay Market - North VancouverMay 2014: Lonsdale Quay Market

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Countdown to chemo 5: I can feel cancer in my blood and it’s messing with my mind

Where can I press reset on today?September 2012: Not feeling so hot leading into 2013 chemo

For me to make it through each day living with multiple myeloma, it is important that I counteract the negativity of cancer. Although my symptoms can be quite challenging at times, I have to socialize. I can’t just hide away in a corner, hoping everything will get better. I need to remain positive and not let stress overwhelm me, in spite of the fact, I can feel cancer in my blood.

It was about 6 weeks ago that my Hematologist told me the news, my cancer had returned. I had hoped I would be in complete remission for years, however it only lasted 8 months. On a cool October day my visions for my future got dropkicked. My focus turned to survival – financially, emotionally, physically from that moment on.

Being my own caregiver makes each day rather interesting. I’m unable to support myself so life is quite challenging. Right now, I remain focused on staying calm and avoiding excessive stress in my life. I need to minimize the likelihood that my cancer levels spike. Each day my levels increase, my multiple myeloma and anemia symptoms become more pronounced. Although I should be focusing on proper preparation for 2015 chemo, my mind continues to wander back to my 9 months of chemo in 2013. The actual date and particular drugs for my 2015 treatment are still unknown, however chemo will happen. No off-ramp on this highway.

Autumn sunsets make my happyOctober 2012: Reflecting on an autumn sunset

Upon learning my cancer re-emerged, I retreated into a “Why now?” cocoon and only recently have I emerged resigned to the realities of my eroding health. By resigned, I don’t mean that I’m staring at a calendar counting down to treatment, but rather that I’ve accepted the realities that come with an incurable, terminal blood cancer. The cancer doesn’t hide forever. Although, I felt like I was drop kicked, I know that I need to be better prepared for chemo side effects this time around than I was in 2013. I worry that I’m not strong enough.

I’m experiencing a variety of multiple myeloma symptoms:

  • tinkling in my body
  • memory problems
  • difficulty in recognizing people
  • problems with counting
  • easily confused
  • feeling overwhelmed in group settings
  • lack of focus

For example: On Friday, I picked up a free 24 hours Vancouver newspaper 3 separate times through the day and put it in my backpack. Each time I thought, “I don’t have a 24 hours and I need to get one”. Today I was sure I needed Bus X to get where I was going and waited at the bus stop. After getting on the bus, the bus driver asked where I was going. I them realized, I didn’t need Bus X, but actually Bus Y and walked to a different bus stop location.

I met someone on a bus in October, we chatted for about 30 minutes and I told them about my cancer and how I wouldn’t recognize them when we met again. When I saw them by chance a few weeks later, they said hi and asked if I recognized them. When I said no, they said that was OK, because I had warned them that would happen if we met again. It is unlikely I will recognize a stranger that I spoke with yesterday. There is also a low likelihood I will recognize a friend that I haven’t seen in at least a month.

Overall, there are daily challenges dealing with multiple myeloma and anemia symptoms. Can’t do this alone. Can you offer help or advice?

Nitobe Memorial Garden UBCApril 2014: UBC Nitobe Memorial Garden

To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. In October, I found out my cancer had returned, and sometime in 2015, I expect to be in treatment again.

I love photography, it is important for my health and happiness. I haven’t taken many photos since my macbookpro died during the summer though. You can view my pictures on Pinterest.

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Countdown to chemo 5: Chemo 4 ended one year ago today

This is my ‘chemo ending’ anniversary as chemo 4 ended today. November 22, 2013 ended 9 months of Velcade chemo. Last year was a very challenging year and the treatment was not without severe side effects. However, in the end I was very happy when the 40 weeks were finally over.

Velcade Chemo Treatment: Cycle 8, Week 5 (Done Chemo!)November 2013: Final Day of Chemo

I can’t look back anymore, I need to focus on the future. My cancer returned in July. I found out last month during a scheduled Hematologist appointment. It has been rough since that time. I can’t begin to explain what that feels like. A year ago today I was soaring through the sky thinking I had 5 years without having to worry about treatment again. There wasn’t any rational for that, I just felt that my immediate future was bright. Now the light around me, is a bit dimmer and a storm is approaching. I’ve been living in a ‘chemo is coming’ bubble, trying to figure out how I can accomplish all the things I need to get done before chemo next year. Right now I’m very poor so my greatest need is money.

There is a long road ahead, I’m focused on staying positive each minute, each hour, each day.

I believe in me.

A quiet walk in the fogJanuary 2013: A quiet walk in the fog

To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. In October, I found out my cancer had returned, and sometime in 2015, I expect to be in treatment again.

I love photography, it helps me remain happy. I haven’t taken many photos since my macbookpro died during the summer though. You can view my pictures on Pinterest.

UBC Wreck BeachMarch 2014: UBC Wreck Beach

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Gloucoma specialist appointment: Eye pressure levels normal

Humphrey Machine Visual Field TestJune 2012: Humphrey Machine Visual Field Test

Originally when I was diagnosed with multiple myeloma, I was given pamidronate to help my bones remain strong as part of my pre-bone marrow transplant treatment. Multiple myeloma is a cancer of the blood plasma located in bone marrow, meaning that cancer can cause my bones to break or result in bone pain. I had a bad reaction, contracted ocular inflammation, and ended up being treated by my Glaucoma Specialist.

High eye pressure makes glaucoma more likely, so it is important that my eye pressure remains normal. Thankfully, the procedure to check my eye pressure (called ocular tonometry), showed my eye pressure levels to be normal. My left eye was 18, my right eye was 19. The backs of my eyes were also examined without any problems being shown. When I have chemo next year, I expect the dexamethasone will cause elevated eye pressure, requiring eye drops to lower them.

Due to the variety of eye issues I’ve had, my Specialist ordered a Humphrey Visual Field Test right after (e.g. a number of years ago I had a stroke in my visual cortex caused by TTP, a rare blood disorder). Basically I sit down in a chair with a clicker and when I see a light flash or move in my periphery I will press the clicker. Each eye was tested. The entire procedure took 20-25 minutes. I will be contacted if the test shows any problems with my eyes.

I love photography and use it for my mental and physical health. I haven’t taken many photos since my macbookpro died during the summer though. You can view my pictures on Pinterest.

Spanning the FraserMay 2014: Canada Line Fraser River Bridge

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Countdown to chemo 5: Higher cancer levels

Nov Blood TestLast week I had my blood test and I was able to view the results the next day online through a free service called myehealth, that is available in my province. A new person took my blood and they were understanding when I told them I needed to take a photo afterwards. What is also cool, is that a technician passed by, noted that they hadn’t seen me for a while, and asked how I was doing.

These are strange days. I’m sitting here looking at my blood test results and really not understanding what everything means. Broadly I realize that I have higher cancer levels, but I’m also worried about whether there are larger issues I should be concerned about. Sometimes blood test results provide more questions than answers. I am remaining calm though. I have an excellent Hematologist and I know I will be contacted if any blood test reveals problems that need be addressed before my next scheduled appointment.

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta Globulin 2 Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
Nov 41.3 11.8 5.5 16.9 .37 .36
Oct 46.2 9.5 6.4 14.8 .39 .27
Sept 45.1 6.2 7.1 12.8 .36 .21
July 45.9 4.9 6.9 10.8 .34 .25
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 3.5 5.1 7.1 .14 .10

Test comment: There is a monoclonal band (approx. 9 g/L) in the beta 2 region. This band was previously identified as IgM lambda. Polyclonal immunoglobulins are not suppressed.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Nov 2.7 130 265 1.3
Oct 4.1 139 305 2.1
Sept 3.7 135 241 1.8
July 2.9 133 247 1.4
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

In addition, the following Hematology Profile measures were slightly below normal:

Hematocrit .39 (.4 – .5)
MCV 81 (82 – 98)
Lymphocytes 1.1 (1.2 – 3.5)

Staying positive!

To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. In October, I found out my cancer had returned, and sometime in 2015, I expect to be in treatment again.

I love photography and use it for my mental and physical health. I haven’t taken many photos since my macbookpro died during the summer though. You can view my pictures on Pinterest.

Winter Sunset on Wreck BeachJanuary 2013: UBC Wreck Beach

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