And change……

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Still on Darzalex

This is just a quick update.  I’m still on Darzalex, but am also taking 2 mg of Pomalyst (pom) 21 days a month.  I’m not taking dex at the moment.  I just get 20 mg of dex with each dara infusion. We’ll see how that goes. For the last 3 or 4 months, I’ve been …

Week 182 of chemo complete: Absence of rain, the new normal?

I like to be prepared in case of rain when I leave the house. I will check the weather report and if there is a possibility of rain, I’ll throw my umbrella in my backpack. As I walk and transit everywhere, I don’t want to get caught up in a rainstorm and end up with a cold. I always need to be cautious with my health, due to my cancer of the immune system.

This morning, I was reflecting on how I couldn’t remember the last time I packed my umbrella or actually felt raindrops on my face. The heatwave experienced here in British Columbia and mirrored elsewhere has been called ‘the new normal’. I hope that isn’t true.

Listening to the pitter-patter of rain is such a tranquil experience.

Week 182 of chemo complete: Absence of rain, the new normal?

On Sunday, August 5th, I completed Cycle 46 Week 2. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and Dexamethasone chemo treatment (Pom/Dex). On July 16th 2017, my Dexamethasone treatment ended, due to right eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th, 2018 I began Ninlaro chemo to combat steadily rising cancer levels. On July 23rd, dexamethasone (40mg) was added to my Ninlaro and Pomalyst chemo treatment, due to excessively high cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

StevestonMay 2014 – Steveston, BC

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Week 172 of chemo complete: Admiring the beauty of nature

In the front area of my home is a Pacific Dogwood tree. I enjoy admiring this beauty of nature each time I look out the window. The tree blooms in April and May and it is the provincial flower of British Columbia. Saturday evening I knew I had to take a self-portrait here before it was too late. Nature rocks!

Week 172 of chemo complete: Admiring the beauty of nature

To recap: On Sunday, May 27th, I completed Cycle 43 Week 4. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Steveston - Britannia ShipyardsMay 2014: Steveston

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Week 161 of chemo complete: Evening adventures by the water

Week 161 of chemo complete: Evening adventures by the water

On Friday, I found a rocky beach area, where I sat and watched as the water moved in and out from the shore. I always enjoy taking self-portraits in the early evening as I prefer the soft light then and I love watching the sun go down. I find that having a creative outlet helps me cope with my long-term chemo and the related side effects. The positive energy generated from my self-portraits contributes to my overall well-being and health.

Feeling happy!

To recap: On Sunday, March 11th, I completed Cycle 41 Week 1. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Sun sets on Granville IslandMay 2014: Granville Island

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Week 159 of chemo complete: Estimate cancer levels reasonably stable

The results from my February monthly blood test were missing the m protein value. My particular type of multiple myeloma is less common and it is not always possible to get an m protein value – the best measure to determine my cancer levels. However, looking at less specific measures on my test results, I believe my cancer levels are similar to January (estimate between 13 and 14). The additional chemo seems to be keeping my cancer levels reasonably stable, however I remain hopeful for lower cancer levels for March.

M protein (g/L) (0 = cancer undetectable)
Feb = value missing (estimate between 13 and 14)
Jan = 13 (began Ninlaro chemo – 2 weeks prior)
Dec = between 10 and 11
Nov = 8
Late Oct = 9
Early Oct = between 5 and 6
Sept = under 7.7
Aug = value missing
July = 3.0 (ended dexamethasone – steroid)
Feb 2015 (began Pomalyst chemo + dexamethasone) = 36.1

Unfortunately, the side effects from two chemo has made me much more mentally and physically fatigued. My mind often wanders making it difficult to remain focused. However, everyday I give myself virtual gold stars for accomplishing challenging tasks with minimal mistakes.

Yes, everything takes longer than usual and I am quite forgetful, but each morning I wake up happy and ready for the day.

Week 159 of chemo complete: Feb blood test results - Mostly Stable

Photo: Life is full of adventure that begin with the first step outside your home.

To recap: On Sunday, February 25th, I completed Cycle 40 Week 3. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Grand Central pleaseMay 2014: Granville Island

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Week 157 of chemo complete: The calm before the snowstorm

Friday morning, as a snowstorm began hitting Vancouver, I travelled back to Queen Elizabeth Park. Everywhere looked so beautiful with the snow falling. Vancouver always looks so amazing when it is snows. Love this city!

Week 157 of chemo complete: The calm before the snowstorm

To recap: On Sunday, February 18th, I completed Cycle 40 Week 2. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Segway on the seawallMay 2014: Segway on the seawall

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Week 156 of chemo complete: Morning walk on Granville Island

Friday morning I travelled back to Granville Island, as a light drizzle fell. As I walked around Alder Bay, I observed a couple ducks swimming and bobbing for food. I always enjoy quiet time by the water.

Week 156 of chemo complete: Morning walk on Granville Island

To recap: On Sunday, February 4th, I completed Cycle 39 Week 4. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

English Bay - VancouverJune 2014: English Bay

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Week 155 of chemo complete: Cancer levels continue to increase

My monthly blood test results for January, show that my cancer levels/m protein have increased from between 10 and 11 in December up to 13 in January. I began Ninlaro chemo with my Pomalyst chemo on January 8th, however, it may be early to see the effectiveness of both chemo. Or looking at it from a positive perspective, if I wasn’t on Ninlaro, perhaps my levels would have spiked to 18 or 20. I have noticed this new chemo has increased my appetite as well as my level of fatigue.

M protein (g/L) (0 = cancer undetectable)
Jan = 13 (began Ninlaro chemo – Jan 8th)
Dec = between 10 and 11
Nov = 8
Late Oct = 9
Early Oct = between 5-6
Sept = under 7.7
Aug = value missing
July = 3.0
June =3.2
Feb 2015 (began chemo) 36.1

My m protein value is my cancer levels marker. Think of it as the amount of myeloma/cancer in my plasma cells. Plasma cells are white blood cells used to fight infection. That’s why multiple myeloma is a cancer of the immune system and also called a blood cancer. If my m protein is 0, then cancer is undetectable in my bloodstream.

I remain hopeful that February’s results will improve.

Photo: Friday afternoon I headed to Stanley Park to take a photo in the forest. I wanted to express the challenges of chemo side effects, through the act of balancing with one foot on a rock. An ordinary task that seems simple and easy, actually isn’t. I am reminded of this when a tourist asks me for directions. I find that I will babble and give a convoluted response forcing me to recommend they ask some else for assistance.

Week 155 of chemo complete: Cancer levels continue to increase

To recap: On Sunday, January 28th, I completed Cycle 39 Week 3. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Take a book, return a bookMay 2014: Granville Island

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Week 154 of chemo complete: The view from Granville Island

Friday morning, as the sun popped in and out of the clouds, I travelled to Granville Island, an area across from downtown, where locals and tourists go for food, shopping, and cultural activities. I searched for a quiet spot, away from the crowds, to watch the birds on the water and listen to sounds of nature. Happy to discover a new place to relax.

I love adventuring!

Week 154 of chemo complete: The view from Granville Island

To recap: On Sunday, January 21st, I completed Cycle 39 Week 2. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Spanning the FraserMay 2014: Canada Line Fraser Bridge

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