Living with multiple myeloma: Survived a viral eye infection

Viral infection in both eyesWaiting in the ER

My third week on chemo treatment started well. I was fatigued a bit and had a cold (sinus and coughing issues), but didn’t have any major side effects to my chemo. I experienced hiccups a few times but only for a few minutes at most. Last Wednesday evening, my eyes became photosensitive to light. I couldn’t look at my phone or laptop with my left eye in particular without intense pain. Thursday morning I went to the ER and was sent to the Ophthalmology Emergency Outpatient Clinic. There I learned that I had a viral infection (adenovirus) in both eyes. I was worried it was related to my chemo treatment or caused by my multiple myeloma, but my eye pressure was found to be normal (12 left eye, 13 right eye), so I’m happy that there weren’t any Glaucoma problems. As this was highly contagious, the doctor warned me not to touch anything, to avoid social contact, and to rest lots as it would go away in a few days. On Monday, my eyes went back to normal.

This week I have off from chemo pills. It feels good to have a break. I start Cycle 2 on Monday. I’m really feeling blessed that I haven’t had any severe side effects common to my treatment over these first 3 weeks.

Happy thoughts keep me positive about life!

I love photography and use self-portraits to help me cope with my disease. Taking pictures improves my well-being. Each week I will be taking a self-portrait that represents some aspect of my experiences on chemo.

Don't touch anything - Isolated due to viral infection
Self-isolation due to viral infection

To recap: I have Multiple Myeloma and anemia, 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. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

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Living with multiple myeloma: Today is Rare Disease Day

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

February 28th is Rare Disease Day.

I have multiple myeloma and anemia, a rare disease. Multiple myeloma is a cancer of the plasma cells, white blood cells in the bone marrow, usually responsible for producing antibodies to help fight infections. According to the Rare Disease Foundation:

A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. About 1 in 12 people (nearly three million Canadians) have a rare disease. Most known rare disorders are severe and chronic, with many being degenerative and life threatening.

Multiple myeloma is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex). For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid.

I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness.

Staying positive!

Watching the sunrise at UBC on New Year's DayJanuary 2014: First sunrise of the year

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Living with multiple myeloma: Knocked down by chemo fatigue

Completed Cycle 1 Week 2: Knocked down by chemo fatigueAll I want to do is sleep

It was a rough weekend. On Friday evening I began experiencing intense chemo fatigue that I hadn’t felt since my last chemo treatment (Velcade/dex) in 2013. It seemed to come out of nowhere. It became further compounded with a bad cold that caused headaches and drained me of energy. Thinking, moving, or talking was challenging. On Saturday I struggled to keep my eyes open for more than 5 minutes at a time, instead opting for sleep, knowing how important rest was for my health and well-being. As dawn broke on Sunday, the fatigue seemed to have left my body. I felt refreshed and re-energized. I’m really glad that’s over, I’m hopeful that Week 3 will be better.

On Sunday I completed Cycle 1 Week 2 of Pomalyst chemo + dexamethasone for my multiple myeloma and anemia. For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid. I didn’t have much hiccups at all during the week. Only a couple of times Monday and Tuesday for a few minutes. Overall, I’m happy with how I’m handling this treatment.

I’m facing any adversity with a smile!

I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness. Each week I will be taking a self-portrait that represents some aspect of my experiences on chemo.

To recap: I have Multiple Myeloma and anemia, 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. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

End of the day on Granville IslandMay 2014: Granville Island

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Living with multiple myeloma: Pomalyst chemo cycle 1 week 2

Living with multiple myeloma: Week 2 Pomalyst chemo treatmentFebruary 2015: UBC campus

On Monday I began my second week of Pomalyst chemo + dexamethasone for my multiple myeloma and anemia. For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid.

The first few days last week were a bit challenging with fatigue, tummy issues, and consistent hiccups (side effect of dex), but I think my body was just adjusting to this new treatment. Right now I don’t have any significant side effects beyond occasional fatigue and weight gain around my face and waist. I weighted 163 pounds January 28th and weighted 169 pounds yesterday.

As a cancer patient, living with a treatable, but incurable rare disease, an ongoing issue for me is when to share that I have multiple myeloma. My concern is how the news will be treated. I’ve lost friends after I’ve told them about my cancer. So I’m always worried that I will lose the opportunity to become friends with someone or that a budding friendship will fall apart. Truth be told, you can never have enough friends.

Lady Grey TeaLady Grey Tea

This contrast with how much I love Lady Grey Tea and how willing I am to share this passion with whomever will listen. I’m like a Lady Grey ambassador – “It will change your life for the better”. What I need to become is more confident talking 1-1 about my blood cancer and my experiences with chemo. I just don’t know who may have a friend or family member touched by cancer, that would welcome the opportunity to have a conversation with me.

I’m hopeful that I will respond well to treatment. I will have a blood test next week. I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness.

To recap: I have Multiple Myeloma and anemia, 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. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

Reading The Emperor of all MaladiesJuly 2014: Reading The Emperor of all Maladies

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Living with multiple myeloma: Pomalyst chemo cycle 1 week 1

Reflecting on Wreck Beach, first cycle of Pomalyst chemo todayWreck Beach: Reflecting on new chemo treatment

This morning, I began a new cycle of treatment called Pomalyst (Pomalidomide). I’m on a 28 day cycle in which I take one pill (4mg) a day for 21 days and then get 7 days off. Pomalyst is combined with dexamethasone (referred to as Pom/dex) to enhance its effectiveness. I will take 10 pills every 7 days (each is 4mg), so 40mg in total every week. I picked up an 8 week supply from the BC Cancer Agency last week. What was very helpful is that the Pharmacist that gave me my dexamethasone also gave me some recommended dietary advice and information about how this steroid drug will affect me. For example, I should take it in the morning with breakfast preferably with water or juice.

PomalystPomalyst chemo pills

Potential side effects of Pomalyst include constipation and diarrhea. There is also a concern that blood clotting may occur, so I take baby aspirin daily, which functions as a blood thinner. Potential side effects of dexamethasone include insomnia, depression, weakened immune system, bone loss, increased appetite and weight gain. I really need to watch my health and listen to my body during my treatment, lots of bad things can happen to my body.

DexamethasoneDexamethasone (steroid) pills

As a multiple myeloma patient, I’m already at a high risk of bone loss and of developing osteoporosis, so it is especially important that I do what I can during treatment to keep my bones strong. The BC Cancer Agency recommends I get 1000 mg of calcium daily, but that I don’t exceed 2500 mg. I get get that from foods such as milk, sardines, and cheese. I can also use a supplement such as calcium carbonate at doses of 500mg or less. They recommend I get 600 IU of Vitamin D but don’t exceed 4000 IU. I can get Vitamin D from fish, milk and eggs. Again, I can also use a multivitamin or a mineral supplement. It is also recommended that I eat protein daily and be physically active.

I’m staying confident that I will respond positively to treatment. I will continue to use photography and self-portraits for health, healing, and happiness.

I’m focused on staying positive each day.

To recap: I have Multiple Myeloma and anemia, 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. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

Vancouver through raindropsJanuary 2015: Vancouver through raindrops

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