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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Countdown to chemo 5: I’ve got chemo on my mind

Taking a night walkSeptember 2012: Taking a night walk

It was a month ago that I learned from my Hematologist the sad news. My cancer had returned according to a late July blood test. It was quite a shock as I thought I wouldn’t have to worry about chemo again for a long time. My focus has changed. I’m living in this ‘chemo is coming’ bubble, not thinking about much else.

I’ve got chemo on my mind.

There are two reasons for this. The first reason is that I’m really not ready for chemo, either mentally, physically, or financially. I’m still recovering from my 2013 chemo. A year ago I was in my 9th and final month of Velcade chemo injections. My immune system just isn’t as strong right now, I’ve had a lingering cold for about six weeks that seems to disappear and reappear. And I’m broke, unable to adequately take care of myself.

The second reason is that I’m really concerned about what might happen to me during chemo. I’m my own caregiver, so I need to deal with my cancer symptoms and chemo side effects as best I can. And the more I think about treatment, the more worried I become. It is more than just the multiple myeloma symptoms that could appear at any time (e.g. confusion, infections, or bone pain). It isn’t just the known effects of chemo (e.g. nausea, fatigue, impaired cognitive functions ‘chemo brain’). Based on my past experiences, I’m wondering what ‘out of left field’ side effects will appear.

Disodium Pamidronate
A few months after my cancer diagnosis as part of my pre-bone marrow transplant regiment, which included dexamethasone, I was given pamidronate as an IV. It is a bisphosphonate designed to help bones remain strong. Myeloma cells can eat away at bone marrow resulting in bone damage, so bisphosphonates are used to slow down that process and prevent bones from weakening (known as osteoporosis).

One morning I awoke to eyes that were red and watery. I was unable to look at any light source without intense pain. Even the light from my cell phone was too bright. I was referred to a Glaucoma Specialist who diagnosed me with ocular inflammation. That is inflammation of the uvea, the middle layer of the eye. My eye drops prescription then caused unexpected complications. As the medication and the dexamethasone were both steroids, they may have contributed to my increased intraocular (eye) pressure. Concerns initially arose that this might result in vision loss due to glaucoma. Fortunately, I was successfully treated. My inflammation was cured and my eye pressure returned to normal levels.

Revlimid Maintenance Chemotherapy
During maintenance chemotherapy for Revlimid, I began experiencing intense headaches coupled with a numbness in my tongue and vision difficulties. Wherever I looked, everything was masked in a white translucent haze. These vision irregularities persisted sporadically for a few days. With the Revlimid, I was given dexamethasone, and based on my past experiences I wondered whether it had caused my eye pressure to spike, resulting in my compromised vision.

I set up an emergency appointment with my Glaucoma Specialist who ordered a visual field test. During the eye test I passed out and was taken to the ER by ambulance. Blood tests and a CT scan revealed I had suffered an ischemic stroke in the left hemisphere of my primary visual cortex. An ischemic stroke is caused by blood clots in blood vessels blocking oxygen-rich blood from reaching a part of the brain. In my case, the area responsible for vision. The stroke was triggered by Thrombotic thrombocytopenic purpura (TTP). TTP is a rare blood disorder characterized by blood clots (thombi) that form in small blood vessels around the body in an abnormal fashion. There are 3–4 cases per million people diagnosed each year. In British Columbia (pop. 4.6 million), TTP occurs only 4–5 times a year. TTP treatment involved being hooked up to a machine that through an exchange transfusion uses an apheresis device to replace bad blood plasma with donor blood plasma. After 12 days in hospital I was released, cured of TTP.

Velcade chemo treatment
Last year, a day after my first Velcade chemo injection, I was walking on the beach when I felt tightness and sharp pain in my back and sides. I spent a restless night where the slightest movement caused intense pain in my side, back, and stomach. As the pain persisted I was upgraded in pain killers from codeine to tylenol with codeine #3, to hydromorphone. The hydromorphone made the pain manageable. I could still feel tightness and walked around in a deliberate fashion.

The weeks that pain consumed me were brutal. Simply adjusting my leg or arm caused a sharp pain or charlie-horse tightness in my side or back. Hiccups, a side effect of dexamethasone, felt like explosions in my body. I couldn’t stand up straight. I would fall out of bed onto the floor and then hunched over walk to the bathroom, physically moving one leg in front of the other with my arms. I spent my time binge-watching TV on my laptop, trying to lie as still as possible, learning about the weather outside my window from Google.

A CT scan scan revealed that myeloma cells had collected in the T7 vertebrae of my thoracic spine and were causing havoc. They were believed to be responsible for the severe pain that had left me bedridden. I was told that radiation would be required to remove them, to help prevent the pain from returning. A month later, I learned from the Cancer Radiologist that radiation would actually be unnecessary. The severe pain I had experienced was the result of my T7 vertebrae collapsing because of the cancerous cells inside the bone marrow. A still-circular vertebrae that causes pain due to cancerous cells inside can be treated with chemo or radiation (targeted chemo). Then cement is added to stabilize the walls of the vertebrae and prevent it from collapsing in the future. My T7 vertebrae was now flat and stable, which was why the pain stopped. So cement couldn’t be added to fix it and make it whole again. If another vertebrae was collapsing in the future, I would be able to receive radiation to kill the cancer cells and stop the pain. As the Velcade chemo was already killing cancer cells in my body everywhere (including in my thoracic spine), additional radiation directed specifically at the T7 vertebrae was perceived to be overkill.

Now, maybe nothing out of the ordinary will happen during my upcoming chemo. However, based my past experiences, I know that I need to remain calm and to expect the unexpected. I’m focused on being ready for anything.

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 once again.

I also love photography and use it for personal health and healing. I rarely take photos since my macbookpro died during the summer. You can view my pictures on Pinterest.

Walter C. Koerner Library at UBCOctober 2012: Walter C. Koerner Library at UBC

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