Oct blood test results: Cancer levels spiked, positivity levels remain unchanged

My Oct blood test results show my cancer levels spiked to 29 from 21 in late September.

I spent about 5 minutes trying different self-portrait ideas, before I was too fatigued to continue and had to leave to rest at home. Although my disease causes chronic fatigue, it has felt more pronounced, like having a full brain, making thinking and physical activities much more challenging.

At this rate, I expect that my November blood test results will also increase and that in December chemo treatment will begin again. Not going to panic. Just staying calm and positive.

Happy November!
—-
M protein (g/L) (if 0, then no cancer detected)
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4 (post-chemo)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan 2019 = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct 2018 = 48

Oct blood test results: Cancer levels spiked, positivity levels remain unchanged
Self-portrait: A morning stroll through the park


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.

From mid-October 2018 to late-May 2019, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

English Bay - VancouverJune 2014: English Bay, Vancouver

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When sleep is like a Facebook timeline!

Last night was a Dex night. I often don’t get to sleep till 3am on the first night, but now I’ve added sertraline back into my concoction of drugs, I thought I’d go to bed at a relatively normal time.

I actually got to sleep pretty fast! But after that it was such a surreal night and genuinely felt like I was working my way through my Facebook / LinkedIn timelines!! It was all I could do to stop myself getting up and doing the things I was having go through my head.

What was weirdest was that it wasn’t really a dream either.

I’m thinking I need a break! Hopefully by the end of this month I’ll have cut down my work quite significantly which will mean that I can take a bit of time out. I might even come off Facebook for a few weeks if I can set up my work to run without me!

In the meantime, I’m grateful for a semi normal nights sleep on a Monday!

Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged

My late Sept blood test results show my cancer levels jumped to 21 from 16. Based on my current progress, I expect to begin chemo in late 2019 or early 2020.

It will be challenging on my body and mind, but I remain hopeful for low stable levels for a long time.

Although I’m easily fatigued and mentally weak, I feel fortunate I can appreciate the changing Autumn colours in my city.

Have a great day!

M protein (g/L) (if 0, then no cancer detected)
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait:
Early morning in Quilchena Park, Vancouver
Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged

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.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Sixth and WillowJune 2014: Sixth and Willow

The post Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged appeared first on Fade to Play.

Head Up and Get on

It’s been just over two months since I started on phase 2 of my treatment journey….i.e treatment since I relapsed. I felt so bouyant when I started it, and really ready to just get on with it, have a few months of treatment and go on to my transplant. Of course I knew what to expect so surely it was going to be a relatively easy walk in the park …. the house and the family would be fine, and work wouldn’t get in the way until I got to the time I went into hospital for my transplant.

Nope…..

I’m struggling. Really struggling emotionally. And actually finding it quite hard to admit it to most people. I’m trying really hard to keep life normal and I know that’s good and mentally in some ways, will keep me stronger than if I allow myself to totally collapse. But it doesn’t take much when I take some downtime, for me to have the time to totally break down in tears and struggle to get my head around this current treatment regime and how it is making me feel, behave and act. I think that’s why I’m keeping so busy because I don’t want to be a wreck whenever I’m not! Poor Nick and the kids don’t know when I’m going to be strong and when I’m struggling and they have been amazing at trying to keep up

Anyway, Nick and I had a small breakthrough this week where I acknowledged for the first time that the side effects from the drugs, largely the exhaustion, but other smaller ones too, were impacting on my ability to cope. I have so many ‘big rocks’ in my life (as Nick likes to call them!), that I’m struggling to manage them all. The family, friends, my father (now with worsening dementia & moved to a home), work, the house, the garden, netball. All of them that have been majorly important to me, and that I haven’t wanted to compromise on any of them.

For the first time, I admitted that something had to be put to one side, and after a long discussion, I have agreed that the something that I’m going to cut right back on is my businesses. It’s been a really hard choice but I’m finding it harder to do it well, and I don’t want to let clients down, In addition, being social media, it is something that stays in mind almost 24-7, and I often find myself working when I should be resting – not good for anyone! I’ve worked so hard to build it up and frustratingly, I was so close to feeling like I was getting where I wanted to be, but I’ve made the decision now to take away the social media management aspect of the business and just focus on LinkedIn training as and when it comes up. At least then I can fit it around when I feel capable of doing it, and it only takes up a couple of sessions of headspace! I don’t quite feel better for having made the decision, but I think I will once I stop at the end of the month. Hopefully it’ll only be temporary until I’m back on my feet next summer, but we’ll just have to see. And hopefully I won’t regret it.

The other thing I’ve found really hard, and I’m only just starting to admit this to Nick, is my relationships with other people. It’s been strange to see the change in how people handle what’s been happening this time round. I’ve got some amazing friends. Some new ones up here in the Midlands, who are always checking in on me even with their own issues. And some amazing friends from my school days who I know are there at every corner too and, despite us now living what feels like a million miles away, I know that they are always there if I could only pick up the phone more often and tell them I need them! And a number of other great friends who really care and keep in touch.

But despite all of this, and despite having the best family in the world, who support me every day with love, cuddles and understanding, I feel very alone sometimes. Maybe my fundraising hasn’t helped as people are so bored of the whole story, that they have switched off what is going on now. Or maybe people I thought cared, just didn’t. Or wrong place, wrong time. I think it’s quite a common thing to happen with cancer (finding that friends drop off) but I didn’t experience it first time round. Or maybe I just didn’t acknowledge it that time, because the people who ignored my diagnosis weren’t that important to me. This time, they have been and whilst I try to understand it, it can hurt sometimes.

I’m very aware that when we made the choice to move to the Midlands, we made this aspect of our life more difficult. We knew that we were taking ourselves away from a support network that was easy, and we did it in the brave and optimistic hope that I would stay in remission. But with the knowledge that I may not. So, this isn’t meant to be about me guilting anyone particularly although I understand that there’ll be people out there that will think I am, or will say what I’m saying is unfair and puts pressure on. But as I’ve always reminded people….this blog is for me first and foremost and I needed to get this off my chest in the way that works for ME. Let me be 100% clear….I don’t want support from people who don’t care because that’s not genuine and I’m not up for fake friends/ relationships. It’s just hard if you realise that perhaps some people you thought would care, haven’t found the time to even ask the question if you are ok.

Anyway, it is what it is and I have decided again that I also need to get some counselling to try and help me make sure I’m handling things better and addressing the bits that are more difficult. It’ll take some time for that to happen though but hopefully the feeling that I’m taking things in hand will help me a bit.

It’s been a busy but productive week

We had a nightmare drive to Sacramento on Tuesday. I have to say this really was the first time it was so awful. First off, we stopped to get gas and the car in front of us( so we couldn’t get to the pump) had what appeared to be someone living out of their car. We waited politely and waited and finally, I backed up and zoomed around to get to another pump.  The lady must have been in the bathroom washing, but then after she pumped her gas she proceeded to wash her car windows. I was getting frustrated at this point and this put us almost 15 minutes behind.

Then traffic was really heavy for some reason and I knew we would be late for B’s infusion appt( to flush his port and labs). We were 20 minutes late. That is a first.

Well, it all ended great with the NP telling us that the BMB results were excellent and chimera was 99%. Truly science is amazing.

We both got our Flu shots and both are arms a little sore. But not too bad. So that’s done.

B got his LLS reimbursement for the insurance so that’s a big deal and in the coming months will make a huge difference. Thank You LLS donors who make these grants possible.

Today I’m heading into AAA to sign up for the home insurance( that they canceled  and we now will be with them but they’re underwritten.) Plus it’s about $600. more annually. WTF!!!!

I might go to the gym afterward or I may just flake. I’ll see how it goes.

I was trying to plan another mini trip to Capitola but Airbnb’s are really expensive and so are hotels. We decided not to spend money on that. I checked New Brighton but it is all full, probably with retirees in huge RVs. 😦

Barclay is still processing going back to work but I don’t want to give up his SDI yet. That money is non-taxable so we will not owe next year. But it only goes thru December and that’s it. But it has been a huge blessing. If he goes back it won’t be his old job as that’s been given to a co-worker and he couldn’t really travel like he did.  His boss has indicated he could do something from home ( ideal ) but he’s still not sure. He’s only 4 1/2 months post-transplant and most people don’t go back to work for a year or not at all.

If anyone has any thoughts or input I’d appreciate the ideas as we definitely conflicted about it.

th

Still Lifes

“In every heart there is a god of flowers, just waiting

to stride out of a cloud and lift its wings.”

Mary Oliver from The Kookaburras

Still Life With Wildflowers

In late August of this year, of the summer when my wildflower garden flourished and yielded a wealth of colorful bouquets, crickets sang each evening their mindful refrain. “Soon,” they said, “the season will tip into autumn.”

In the garden, cosmos plants stretch beyond my height, seven feet or more. The flags of their flower petals flutter with the benediction of a breeze. Coreopsis and zinnias; daisies and coneflowers; bachelor buttons and black eyed Susans spill across the borders of the rocky path.

Poppies

Gardening focuses a too busy mind. Often, I am knuckle deep in soil and its mix of bugs, worms, and microbes. I breathe the earthy fragrance of organic material and enjoy common cause with other creatures.

Birds visit during the day. They pluck seeds from the same blossoms where bees nuzzled pollen. Beetles, spiders, and winged insects are drawn to the abundance of plants as they make their way through the territory of their brief lives.

Early Summer Wildflowers

Me too … I reap the peace of communing with wildlife and harvesting flowers that pose as still lifes in the kitchen and bedroom.

The late American poet, Mary Oliver, created still lifes with words rather than paint or photography. Her poetry arose from wandering in the hills and fields of New England. She developed a knack for finding the extraordinary in the ordinary.

Wildflower Bouquet

In her later years, she moved to Florida. She continued to write until the end of her life, taking inspiration from nature in the estuaries, ponds, and dunes of her new surroundings. At the age of 83, she died from lymphoma, a kissing cousin to my blood cancer, multiple myeloma.

My disease paints a picture similar to a still life: it doesn’t move, yet there is a fascination with the details. I have ups and downs but, basically, things are about the same this year as they were last summer when the season began to turn. I persist in a plateau phase with a lengthy history. The relevant blood markers remain stable, the treatments have not changed, and my quality of life is decent.

Still Life with Ukulele

Metaphorically, though, I am under house arrest. I don’t travel well due to the side effects of a busy treatment plan and Mr. Fatigue visits on a regular basis. Nonetheless, I approach 12 years since diagnosis. Cautious management and lots of luck has forestalled the incurability associated with MM.

There is much to be grateful for. Lately, it’s wildflowers, still lifes, and Mary Oliver. That’s plenty … until I write again.

 

Who Made The World

 

Early Sept blood test results: Cancer levels increased, planning for early 2020 chemo

My September blood test results show my cancer levels have risen to 16 from 13. Although this is only a small increase, I’m trending in the wrong direction as my cancer continues to affect my physical and mental abilities. So, I’m expecting early 2020 chemo, and focused on being mentally prepared, when the time comes.

Conversations are problematic as simple sentences can come out wrong. I’m also very clumsy and find that I will knock things over or run into walls. This is expected though as my cancer levels rise and I get closer to chemo treatment, easy things become more difficult and difficult things are super challenging.

Instead, I’m really focused on remaining calm, finding inner peace, and experiencing happiness within. I’m conserving my energy and prepare my body and mind for the long journey ahead through healthy eating, reading, and quiet time.

My next treatment will be pretty intense, as I’ll be on IV and oral chemo indefinitely. However, I remain optimistic that I will be able to handle any adverse side effects and that treatment will keep my cancer levels low and stable.

Staying positive – Happy Autumn!

M protein (g/L) (if 0, then no cancer detected)
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait:
Afternoon wanderings in Queen Elizabeth Park

Early Sept blood test results: Cancer levels increased, expecting chemo before Spring

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.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Lynn Creek @ Varley Trail - Lynn Headwaters Regional ParkLynn Headwaters Regional Park

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August blood test results: Cancer levels doubled, feeling a bit nervous

I’d been feeling more fatigued than usual leading up to my blood test – chronic fatigue is one of the symptoms of multiple myeloma and I wondered whether my cancer levels were still reasonably stable. Unfortunately, my August blood test results earlier this month showed my cancer levels doubled from 6 in July to 13.

Goodbye single digits, thanks for the memories.

I remain hopeful that my September results won’t spike again, but I’m also mentally prepared if I need to restart chemo again in the near future. I really am happy to have a break from chemo, the last chemo really affected my mental and physical abilities.

I’m not letting cancer get me down. No time for stress. Remaining positive about life.

M protein (g/L) (if 0, then no cancer detected)
Aug = 13
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait:
Sunday morning, I went to Queen Elizabeth Park for some quiet time.

August blood test results: Cancer levels doubled, feeling a bit nervous

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.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

End of the day on Granville IslandMay 2014: Granville Island

The post August blood test results: Cancer levels doubled, feeling a bit nervous appeared first on Fade to Play.

Midweek musings

I had a good doctor visit. As I mentioned my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m not ok and not panicking. I went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on the every 2-week clinic schedule and that will be very nice.

 

What’s next?

This is a busy week with appt’s almost every day.

Today I have an appt at DMV, yes, the dreaded DMV, to get my license renewed and try and get the real ID. The real ID requires a certified birth certificate and lots of other proof pf residency things. One reason I persisted in the NYC birth certificate debacle is I knew that this was coming. So we’ll see how it goes and I’ll report back.

Tomorrow is clinic and labs and my daughter has volunteered to drive.

Wednesday I see my oncologist so I didn’t want to have to drive 2 days in a row. I’m going to go over my old lab results when my light chains were over 1,000 mg/L. I just want to hear his assessment of when to be more concerned. I’m guessing he’ll say the same thing, that when my numbers are much higher.

Then Thursday is open.

Friday is back down to the urologist for an endoscopy to see if there is any blockage or how does the prostate look? It is an office procedure so no sedation.

We also need to get the oil changed in the car and will do that Thursday. B said he’d go. So that would be his first time out driving the Santa Fe in a while. He’s definitely able to do that now and isn’t shakey. So progress!

The zone this week is the living room and I finished that yesterday. Since our front room is small and there’s not a lot of clutter I was able to finish it in about 15 minutes. I washed windows, dusted, checked my plants and washed the mirrors. That’s about it. I do look regularly what to declutter but right now I’m content with what’s in the bookcase and also the Heywood hutch. In the Heywood is my pinecone ware so that stays. I do love looking at it and using it too!