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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He said “I don’t mean to disrespect you”, and handed me some change

A Foggy evening at UBCJanuary 2014: A foggy Vancouver evening

Last week as I was sitting alone on a bench, a group of people walked by laughing and enjoying each other’s company. I looked up, smiled, and said ‘hi’. One guy turned around, came by and apologetically said “I’m don’t mean to disrespect you”, reached into his pocket and handed me some change. A friend walking a few steps behind, reached into his wallet and pulled on a $10 bill. I thanked each person for their kind gesture. It was very much appreciated and will help me buy food this week.

In no way did I consider either gesture to be disrespectful, but instead believed they looked at my appearance (worn shoes, tattered coat) and concluded I was in need. It is interesting how in society we notice people that could use our help and I’m happy that they chose to reach out.

There are really challenging days. I feel like I’m living Fall 2012 all over again, which was a bad time I would like to forget. In 2014, I’m in much worst shape. Both my cell phone and laptop are broken, limiting my communication. My body and mind are still recovering from my 2013 chemo and I don’t have the means to turn my health around before my next chemo wrecks havoc on my world.

How will this all turn out?

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 now though. You can view my pictures on Pinterest.

North VancouverFebruary 2014: North Vancouver

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