Week 188 of chemo complete – Hello Nature!

I love saying Hello Nature! I wonder if there is somewhere in the world where sunflowers grow as big as trees. That would be an amazing place to visit. While taking my self-portrait, bees were flying around, but I focused on the shot, and didn’t worry about getting stung.

Just another beautiful day for photography.

Week 188 of chemo complete: Hello Nature!

On Sunday, Sept 16th, I completed Cycle 47 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 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.

StevestonMay 2014: Steveston

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Week 187 of chemo complete: Cancer levels still rising, ready for new treatment options

Looks like it is time for new treatment options. My monthly blood test results for September show that my cancer levels (m protein) have increased again. With my Ninlaro and Pomalyst chemo, I was given dexamethasone for 4 weeks at 40mg/week and for 3 weeks at 20mg/week when the blood test was taken. I’m no longer on dexamethasone after 8 weeks (2 cycles).

M protein (g/L) (0 = no cancer detected)
Sept = 41
Aug = between 37 and 38
July = between 31 and 32
June = 25

It is surprising that my cancer levels are not dropping. Each monthly blood test result since Spring shows more cancer cells in my bone marrow to attack my immune system than the previous month. This really isn’t sustainable.

I’m not stressed. Multiple myeloma is an incurable, but treatable rare cancer. Sometimes chemo works, sometimes it doesn’t. When I see my Myeloma Specialist later in the month, I have complete confidence that we will find an effective treatment. Looking forward to lower and stable cancer levels again soon.

Everything’s going to work out.

M protein (g/L) (0 = no cancer detected)
Sept = 41
Aug = between 37 and 38
July = between 31 and 32
June = 25
May = 20
Apr = 20
Mar = 13
Feb = value missing (believe similar to January)
Jan 2018 = 13 (began Ninlaro chemo – Jan 8th)
Dec = between 10 and 11
Nov = 8
Late Oct = 9
Early Oct = between 5 and 6
Sept = under 7.7
Aug 2017 = value missing
Feb 2015 (began Pomalyst chemo + dexamethasone) = 36.1

Photo: What is going here?
This self-portrait represents the questions going on in my mind. When you click a lamp’s switch you expect it to turn on, because it turned on the last time you tried. If it doesn’t you check and make sure it is plugged in. If it is, you simply figure the bulb has burnt out, and you look for a replacement.

I’m sitting here trying to understand how chemo + dexamethasone, which lowered my cancer levels and kept them stable last year, isn’t working now. I figure that my current chemo treatment is exhausted – burnt out and isn’t able to effectively fight my myeloma.

It is time for something different.

Week 187 of chemo complete:  Cancer levels still rising, ready for new treatment options

On Sunday, Sept 9th, I completed Cycle 47 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 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.

Take a book, return a bookMay 2014: Granville Island

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Week 183 of chemo complete: Mirror, mirror…

Sunday morning it was lightly raining outside. It was so peaceful to hear the beautiful sound of raindrops outside my window. I didn’t want to go outside, so I grabbed a mirror in my room and took a self-portrait. Mirror photos are fun.

Week 186 of chemo complete: Mirror, Mirror...

On Sunday, Sept 2nd, I completed Cycle 47 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.

Lynn Creek @ Varley Trail - Lynn Headwaters Regional ParkFeb 2017: Lynn Headwaters Regional Park

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

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Week 185 of chemo complete: Closing my eyes, just for a moment…

Friday I was feeling pretty fatigued, either related to my multiple myeloma + anemia or side effects from dexamethasone. Whenever fatigue hits me, it makes it much harder to think. I find it best if I stop whatever I’m doing, and close my eyes. Napping helps me recharge. When I wake up I usually feel alive and refreshed – ready for new adventures.

Week 185 of chemo complete: Closing my eyes, just for a moment...

On Sunday, August 26th, I completed Cycle 47 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 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.

Sun sets on Granville IslandMay 2014: Granville Island sunset

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Week 184 of chemo complete: Let’s try this again

I returned to the BC Cancer Agency to take my self-portrait on the outside patio. I wasn’t completely satisfied with last week’s photo there as I didn’t have time to try out a particular concept I was thinking about. So Tuesday morning I went back with the goal of bringing my idea to life.

Feeling happy with the end result.

Week 184 of chemo complete: Let’s try this again

On Sunday, August 19th, I completed Cycle 46 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 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.

English Bay - VancouverJune 2014: English Bay – Vancouver

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Week 183 of chemo complete: Cancer levels spiked again, remain high

My monthly blood test results show that my cancer levels (m protein) jumped to between 37 and 38 from between 31 and 32 in July. In June they jumped to 25, up from 20 in May. This is unexpected.

The blood test included 3 weeks of dexamethasone (dex) at 40mg, a steroid that should enhance the effectiveness of my Ninlaro + Pomalyst chemo. Ideally, my cancer levels should be going down. Perhaps, it is too soon for a response. Pomalyst + dex effectively kept my cancer levels low from Jan 2015 – July 2017. In July 2017, I stopped dex due to eye damage and added Ninlaro chemo last January.

I have an Optometrist to monitor my eye pressure through regular eye exams. Dex can increase my eye pressure and cause eye damage from long term use. My recent eye exams show that my eye pressure remains normal. The lumigan eye drops prescribed by my Glaucoma Specialist are working great.

I’m not worried. I have an amazing Myeloma Specialist, who will adjust my treatment as needed to get my cancer levels lower and stable. I’m confident my results will be better in September.

Staying positive!

M protein (g/L) (0 = no cancer detected)
Aug = between 37 and 38
July = between 31 and 32
June = 25
May = 20
Apr = 20
Mar = 13
Feb = value missing (believe similar to January)
Jan 2018 = 13 (began Ninlaro chemo – Jan 8th)
Dec = between 10 and 11
Nov = 8
Late Oct = 9
Early Oct = between 5 and 6
Sept = under 7.7
Aug 2017 = value missing
Feb 2015 (began Pomalyst chemo + dexamethasone) = 36.1

igG protein (6.7 – 15.2 normal levels)
Aug = 42.1
July = 40.4
June = 30.5
May = 25.8
Apr = 22.7
Mar = 22.0
Feb = 23.1
Jan = 20.6

Photo: At the BC Cancer Agency, adjacent to the patient’s lounge inside, there is a outdoor area where patients and staff will go to relax and sit. Friday was one of the rare times this week, when the sun was shining and I could see blue sky. We have tons of forest fires in BC right now and overcast/smoky skies are unfortunately common.

Week 183 of chemo complete: Cancer levels spiked again, remain high

On Sunday, August 12th, I completed Cycle 46 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 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.

End of the day on Granville IslandMay 2014: Granville Island – Vancouver

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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 181 of chemo complete: Take dexamethasone with food

As previously stated, my July blood test results showed that my cancer levels (m-protein) have spiked to very high levels (May = 20; June = 25; July = 31 – 32). So my Myeloma Specialist has added dexamethasone (dex) to my chemo treatment of Ninlaro and Pomalyst. If m-protein = 0, then no cancer/myeloma is detected in my bloodstream. From January 2015 – July 2017, dex was very effective in keeping my cancer levels low and stable. It was stopped, due to eye damage, as my eyes are sensitive to steroids.

On the recommendation of my Glaucoma Specialist, I now have an Optometrist to regularly monitor my eye pressure and help ensure that dex doesn’t cause further eye damage from long-term use. I also remain on Lumigan eye drops, prescribed by my Glaucoma Specialist to help keep my eye pressure normal.

I’m not a fan of dex. I don’t like my moon face or how it enhances my chronic fatigue. Dex makes everyday thinking and doing much more challenging. However, I believe it will my lower cancer levels, so I’m ready for anything.

Feeling optimistic!

Week 181 of chemo complete: Take dexamethasone with food

On Sunday, July 29th, I completed Cycle 46 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 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.

Waiting on letters from a friendMay 2014: Granville Island – Vancouver

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Week 180 of chemo complete: Woke up with a charley horse

A charley horse to begin the day is always a shock. Unfortunately, muscle spasms are common symptoms of multiple myeloma and side effects of my chemo. It feels like a knot is super tight in my leg, the pain is immense. Seconds seem like minutes, minutes seem like hours.

My strategy: Remain calm, let my mind wander, and ‘happy thoughts’ the pain away.

Week 180 of chemo complete: Woke up with a Charley Horse

On Sunday, July 22nd, I completed Cycle 45 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 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.

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

Steveston - Canada GeeseMay 2014: Steveston – Canada Geese

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Sweltering

Helter Skelter in a summer swelter. The birds flew off with a fallout shelter. Eight miles high and falling fast
American Pie – Don McLean

Got to love the unrelenting heat … KFLC = 291 (as of 22nd June) … 

Not much to report, really. It is now 6 months since I began my chemo. Various delays have dragged the process out even more than I had anticipated. 25 weeks down, but 6 still to go. I’m pretty much fed up with the whole experience. I can’t even be bothered to regale you with the story of the week we just wasted while the hospital forgot to order my next consignment of drugs. My sister came to stay last week. It was lovely to see her – and a load lifted, for Marisa, to have someone else to cook the tea, and walk the dog. I’m thankful for that. Each week is one closer to the end.

My light chains continue their slow descent, which is the main thing. The last month’s results indicate that I will be approaching this transplant process with my myeloma more suppressed than last time round. Indeed, I’m hopeful I will start this SCT with my light chains almost where they were at the end of the last one. That makes me optimistic the outcome of the transplant will be another deep long remission* (though there’s nothing certain, at any point, about myeloma prognosis).

I’m fairly sure that my myeloma is no longer contributing any symptoms. My ups and downs, of which there are still too many, must all be drug side effects (mostly, I blame the thalidomide). I’m endeavouring to live quiet and subdued, so as not to disrupt or provoke my body. It means I do little, but if it reduces the flare ups of bone pain, or infection, its worth it. Frustrating though. And boring. I can’t help wondering about the figure I cut. I can see in the mirror that I look reasonably healthy, except I can’t stand upright. But I imagine that the rest – getting up late, sitting in armchairs a lot – bears more than a passing resemblance to laziness.

Yesterday morning I waved off Marisa and the boys as they headed to the airport and a flight to the French Med. A friend has generously invited Marisa to start the school holidays with a week at their family’s holiday apartment. I figured my presence wouldn’t add to anyone’s enjoyment.

So, I have a week on my own. I’m going to take myself down to Sussex and enjoy the weather. Peace and quiet has a certain appeal, and anyway, mine is an inherently lonely journey. Strip away the various illnesses and the aches, and the most notable aspect of the last 6 months, is the enveloping solitude. My 2018 hardly intersects with anyone else’s. I do look forward to rejoining the world around me as a proper participant, when this leg of the journey is done.

I had hoped to be out of treatment during the school holidays, but that is not how it has worked out. Despite the chemo, we have booked a holiday for the last 2 weeks of August. Assuming I can get my pharmaceuticals through customs, I’ll be taking my last few pills, and hopefully not too stricken with aches. We will be staying at an all-inclusive resort, very much not our normal style. I’m really looking forward to it. It will give Marisa two whole weeks off; offer the kids plenty to do; and let me sit by the pool without feeling like I’m a big drag anchor.

I am, as always, incredibly grateful to Marisa. She has carried the load, again, this year, and put up with me. (No-one would want to have to share a bed with me, I can assure you. You have no idea.) It seems too little, on my part, to have merely taken my pills, and tried not to moan.

Still, the end is now in sight. I’m looking forward to being more fully present. Yes, I’ll still have the transplant to get through, but that is a known quantity, and finite. So, I have this week to embrace my solitude. From next week, I want to be able to enjoy the summer with my kids and my wife – to emerge from the chemo-fog back towards some approximation of normal. I’ll still have to take it easy for a little while longer, because I still have a few more weeks’ drugs to take, but it’s not so long now.

* There’s some discussion, on myeloma threads, about whether myeloma actually has “remission”. In the sense applied to some other cancers, where “remission” means “gone away, hopefully not coming back”, it does not, because it is always in the process of coming back. But in the “remitting/ relapsing” sense applied to some other diseases – such as multiple sclerosis – it very much does. For me it is most helpful to think of my myeloma in terms of managing a chronic disease. And I use the word “remission” in that context.