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.

Week 178 of chemo complete: Everything’s blurry

Chemo treatment is a journey into the unknown. You’ll wake up on morning and something will be different with your body. It may not necessarily be painful or require immediate medical attention, but rather present an inconvenience that you didn’t expect.

Last week I woke up and noticed that I couldn’t see clearly out of my left eye, everything was blurry. Fortunately my right eye seemed fine, so I was able to read, walk around, and get things done without significant difficulties. Sometime during the afternoon, it cleared up, without me even noticing. Why did this happen? I don’t know. It may be a side effect of chemo treatment or a symptom of my cancer.

I took this self-portrait a couple days later. Yes, my right eye looks a little red. My eyes became red a couple times that day, before returning to normal. I didn’t experience any pain and I have no idea why this happened. Perhaps it was chronic fatigue from multiple myeloma or caused by my chemo.

I always keep my specialists fully informed regarding any changes to my health. I don’t want small issues to become big problems.

Week 178 of chemo complete: Everything's blurry

To recap: On Sunday, July 8th, I completed Cycle 45 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 I began Ninlaro chemo to combat steadily rising cancer levels.

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

Steveston May 2014: Steveston, BC

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Week 177 of chemo complete: Ready for the unexpected

This morning a hummingbird appeared outside my window, hovered, and then disappeared. Wildlife rocks! It reminded me that at anytime something unexpected can happen that will brighten my day. Excited for tomorrow, ready for the unexpected.

Week 177 of chemo complete: Ready for the unexpected

To recap: On Sunday, July 1st, I completed Cycle 45 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 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 - Canada GeeseMay 2014: Steveston – Canada Geese

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Week 176 of chemo complete: My 3 options when I need to change treatment

In March my Myeloma Specialist/Hematologist provided me with 3 options, should we need to change my chemo. My current treatment is Pomalyst + Ninlaro, which are chemo pills. At the time, my cancer levels (m-protein) had been stable for the previous 3 months at 13. Last month my cancer levels spiked from 20 to 25.

This knowledge was very much appreciated as it allowed me to leisurely think about the advantages and disadvantages of each, without pressure. I feel better prepared and confident that when necessary, I’ll make the right decision – in consultation with my Myeloma Specialist.

Option 1: Velcade (high-dose chemo injections) + Cyclophosphamide (chemo pills) + low dose Dexamethasone (steroid pills)

Advantages:
Back in 2013, I had 9 months of treatment followed by 8 months of complete remission, meaning my myeloma was undetectable. So Velcade had previous success.

Disadvantages:
Velcade excited the myeloma cells in the bone marrow of my t7 vertebrae causing immense pain as it slowly collapsed. Although Velcade shortened my height, I feel fortunate not to be paralyzed.

Treatment Setting: Hospital

Option 2: Pomalyst (chemo pills) + low dose Dexamethasone (steroid pills)

Advantages:
This was my treatment from Feb 2015 – July 2017. I believe this combination is likely to lower my cancer levels and keep them low and stable, because that is what was happening before we stopped Dexamethasone.

Disadvantages:
Recall that I was on Dexamethasone with my current Pomalyst treatment from Feb 2015 until July 2017. My Myeloma Specialist stopped it after my Glaucoma Specialist found that Dexamethasone increased my eye pressure. I was prescribed eye drops, which have kept my eye pressure normal, however the Dexamethasone caused right eye damage. As my eyes are steroid sensitive to Dexamethasone, renewing this treatment could result in further eye damage. I would have to find an Ophthalmologist to monitor my eye pressure monthly.

Treatment Setting: Home

Option 3: Pomalyst (chemo pills) + Darzalex (high dose IV targeted treatment)

Advantages:
I would remain on Pomalyst, which doesn’t seem to have any major side effects for me. Combined treatment may be more effective that just Pomalyst or Darzalex alone. As targeted treatment (this is a monoclonal antibody), Darzalex attaches directly to my myeloma cells to kill them and/or allow my immune system to destroy them. This option would be an opportunity to try something new and different.

Disadvantages:
It is unknown what side effects I may experience and there are always general concerns with any IV treatment.

Treatment setting: Hospital

Everything is going to be alright. When I think positive, positive things will happen.

Photo:
These fruit represent my 3 treatment options. The Granny Smith apple is Option 1. It is a common fruit that I’ve had before. I know what I’m getting and what it tastes like. Similarly I know what Velcade + Dexamethasone treatment will be like and the side effects I should experience.

The navel orange symbolizes Option 2. I’ve eaten navel oranges before and know how they taste. Comparably, I know what to expect from Pomalyst + Dexamethasone treatment and the side effects likely to occur.

Option 3 is the Asian pear (front). I have never had an Asian pear before so eating one would be something novel. It is a different colour and shape from what I’d expect a pear to look like. Likewise, Darzalex would be a new experience for treating my multiple myeloma.

Week 176 of chemo complete: My 3 options when treatment change needed

To recap: On Sunday, June 24th, I completed Cycle 44 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 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.

No lawn to mowMay 2014: Coal Harbour – Vancouver

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Week 175 of chemo complete: Cancer levels have spiked

My June blood test results show that my cancer levels (m protein) spiked from 20 to 25. It is difficult to get an accurate m protein value with my particular type of multiple myeloma, so my Myeloma Specialist/Hematologist also looks at another more general measure, called an igG. Together they provide a more complete picture of my progress. My igG increased from 25.8 to 30.5.

During my July appointment, we will discuss these results and decide when the right time is to change my treatment. During my last appointment I learned about the treatment options available to me. Breaking down the advantages and disadvantages of each alternative will help me make an informed decision supported by my Myeloma Specialist.

Recall: Jan 2015 – began Pomalyst chemo + Dexamethasone (steroid). July 2017 – taken off Dexamethasone due to eye damage. January 2018 – added Ninlaro chemo. Currently on Pomalyst and Ninlaro chemo.

I’m not upset or sad. Everyday I try to stay positive and create a happiness bubble around me. I enjoy reading, I love photography, and I welcome opportunities to explore new places.

Glaucoma Specialist Appointment
I have ongoing appointments with my Glaucoma Specialist to monitor my eyes. I’ve been on an eye drops prescription since November 2016, because the long term use of Dexamethasone adversely affects my eye pressure, resulting in eye damage. That’s why I was taken off Dexamethasone in July 2017. The eye drops keep my eye pressure low and stable. At my June appointment, my Glaucoma Specialist found my eye pressure to be normal (14 each eye), which is good news.

X-ray of Right Femur
I woke up one morning and my right thigh was sore causing me to limp off and on. Sometimes simple tasks like putting on a sock is difficult, other times I don’t even notice the soreness. I don’t know what is going on, as my right thigh feels weaker. My Myeloma Specialist ordered an x-ray and we will discuss the results next month. I suspect it is either a symptom of my multiple myeloma (e.g. bone pain, lesions, bone degeneration) or a side effect (e.g. muscle or joint pain) of my chemo treatment.

M protein (g/L) (0 = cancer undetectable)
June = 25
May = 20
Apr = 20
Mar = 13
Feb = value missing (believe similar to Jan)
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

The goal of multiple myeloma treatment is to improve survival, by reducing the cancer cells (myeloma) in the immune system as much as possible for as long as possible. The more myeloma (m protein > 0), the greater likelihood of cancer symptoms affecting my everyday life.

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

Photo:
Early Saturday morning I was walking to the nearby forest, when I stopped to watch the sunrise. The beginning of a beautiful day on the Sunshine Coast.

Week 175 of chemo complete: Cancer levels spike again

To recap: On Sunday, June 17th, I completed Cycle 44 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 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.

StevestonMay 2014: Steveston

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Week 174 of chemo complete: Nature makes me happy

This morning I sat on a rocky formation watching the water rushing back and forth. I love the sounds the waves make and enjoy seeing wildlife flying overhead. Nature makes me happy.

Week 174 of chemo complete: Nature makes me happy

To recap: On Sunday, June 3rd, I completed Cycle 44 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.

English Bay - VancouverMay 2014: English Bay – Vancouver

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Week 173 of chemo complete: A quiet moment of solitude

One of the side effects of chemo treatment is how it affects my body temperature. I’m always feeling cold and continue to wear a toque when I feel chilly. This morning, I found it too cold (probably 10-11C/50-52F), to take a beach photo, so instead I waited until the weather warmed up, closer to noon. I then had a quiet moment of solitude.

Staying positive!

Week 173 of chemo complete: A quiet moment of solitude

To recap: On Sunday, June 3rd, I completed Cycle 44 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.

No lawn to mowMay 2014: Coal Harbour – Vancouver

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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

The post Week 172 of chemo complete: Admiring the beauty of nature appeared first on Fade to Play.

Week 171 of chemo complete: Cancer levels mostly the same

My May blood test results remained mostly the same as April. My M protein (specific measure of cancer levels) remained the same at 20. It is difficult to get an accurate M protein value with my particular type of multiple myeloma, so we are also looking at another more general measure, called an igG, to get a more complete picture of my progress. The igG showed a slight increase (22.7 -> 25.8). However, as my cancer levels have not spiked again, there will be no change in treatment.

I’m focusing positive energy on good results for June. Feeling content.

M protein (g/L) (0 = cancer undetectable)
May = 20
Apr = 20
Mar = 13
Feb = value missing (believe similar to Jan)
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

The goal of multiple myeloma treatment is to improve survival, by reducing the cancer cells (myeloma) in the immune system as much as possible for as long as possible. The more myeloma (m protein > 0), the greater likelihood of cancer symptoms affecting my everyday life.

igG protein (6.7 – 15.2 normal levels)
May = 25.8
Apr = 22.7
Mar = 22.0
Feb = 23.1
Jan = 20.6

Week 171 of chemo complete: Cancer levels mostly the same

Photo: Thursday evening I went back to the forest near my house. I just love the forest energy around me when I walking down a path, it is so still and quiet. Looking forward to exploring again soon.

To recap: On Sunday, May 20th, I completed Cycle 43 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.

Sun sets on Granville IslandMay 2014: Sun sets on Granville Island

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