Things to do….

I just got back from getting the blood work for the fasting tests. That’s cholesterol and glucose. Plus they require the nicotine test.  I’m not sure what my Cholesterol is. I vaguely remember a few years ago it being border- line but then ( I think) after that, the good one was really good. I think that’s when I started walking every day. So it’ll be interesting to see what it is. Then next week are my regular labs, light chains, SPEP, they’re CMP, and BMP. Maybe those are the same, not sure. There’s 4 tests I do so.?

Then next week I see the oncologist as well. B is taking me so I don’t have to drive to Sacramento. I think we’re going to sell the van as it’s really not being used so it’s more likely something is going to go wrong on it. When I use it every day, I can tell how it’s running. But lately, I’m not using it.  So, It might be time to just pass it on. Plus I told my son he could have the money for his tuition costs. He’s thinking of classes at Sacramento State instead of San Francisco State. If we could do more I would but we need to save as much as we can for the retirement moment.

After videoing the entry way, I saw some things to change.

IMG_1162.jpg This is the before picture. and this is the after

IMG_1174.jpg

It seems cleaner looking. what do you think? I think I want to get a white basket for dog stuff. Plus, I think want to rehang the metal dust pan somewhere else too.

Well, I’m off to do laundry and maybe go back to town as I need to go the bank. On the other hand, it can wait till tomorrow too.

What’s in the box?

Yesterday I left you all with a bit of a teaser, what was in the box?

Birdie kindly suggested that it was Ted 😂.

The present was for me from Mike. Mike had careful chosen the gift and placed it in an old shoe box, sealed the box and then given it me to wrap as he can’t wrap neatly. Men!! 😄

On Christmas morning I opened the present to find:

Excuse the trellis in the background, storm Eleanor struck!


Green pixie boots!!!!

Aren’t they fab? I love them. I love the colour. I love the fur-effect lining which keeps my feet warm. I love the reference to pixies (one day I will explain the relevance). I like to imagine that Paula would have approved too. 


2018 here I come!

Happy New Year! I hope you all had a pleasant Christmas. It was of course very quiet for us, Mike is still suffering with lack of energy, the sofa is his new best friend. I am doing my best to take care of him. 

Yesterday I deactivated my Facebook account, anyone who failed to give me contact details, or ask me for mine, will only have this blog (if they ever bothered to bookmark it) for news of how I am doing.  Do I feel bad about that? No, just shows how little notice people take of what others say on social media.

So dear bloggy friends, for the next twelve months, you are going to be inundated with all those food / dog / birds / garden / anything I take a fancy to, photos that once cluttered up FB. 

We’ll start with a photo of Toni taken on Christmas Day and one of her new friend Ted. 


Week 150 of chemo complete: The view from the North Shore

On Friday, as the rain was steadily falling, I took the Seabus across the Burrard Inlet, from downtown Vancouver to the North Shore, North Vancouver. Close to Waterfront Park, I stopped to admire the Vancouver skyline and watch cargo ships passing by. An enjoyable experience.

Week 150 of chemo complete: The view from the North Shore

To recap: On Sunday, December 17th, I completed Cycle 38 Week 1. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that 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.

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

End of the day on Granville IslandMay 2014: Granville Island

The post Week 150 of chemo complete: The view from the North Shore appeared first on Fade to Play.

Touch of the flu…and carfilzomib

I began feeling a bit “off” right before Xmas…Fatigue (I mean, I couldn’t keep my eyes open…), immense fatigue…and a low-grade fever: those were my main symptoms. Nothing major, as you can see, but it was enough to slow me down at a time that is normally quite busy for me, including frenzied Xmas cookie baking and that sort of thing.

The low-grade fever turned into a proper fever after Xmas, so I gave up fighting it and just slept. And slept and slept. Then, a day or so ago, the fever was gone. The main symptom is gone, but I’m still super fatigued. Bummer.

That said, I’d much rather be fatigued than have THE DREADED COUGH! So, truth be told, this touch of flu hasn’t been all that bad. Many of our friends and neighbors have had a terrible time with this flu (one of my friends had it twice!), so I can’t complain. Besides, I had the best nursing care ever. In addition to Stefano, of course, my adult cats made sure I was always warm and surrounded by purrs and love…Whenever I’d wake up from one of my comas, there they were…on top of me and/or around me. So comforting!

I’m still too exhausted to feel up to bringing in the New Year with our friends, so Stefano and I are staying at home with the kitties…Speaking of which, Pandora and Pixie are still in their quarantine room, mainly because their ear mite infection hasn’t completely cleared, and ALL WE NEED is for the other five adult cats to get ear mites (AGGGHHHHHH!!!). But just a few days from now the vet is coming to check them over, so it won’t be long before we will be able to let them out…It’s TIME. They’ve been isolated in that (big) room for almost two months now. Such good, patient kitties…but they really want to come out, now…And they’re getting BIG…I’ll try to post a photo or two tomorrow…

As for carfilzomib, well, the news isn’t all that great. Since some of you might be taking it or might know someone who is, I thought you might want to read about the recent discovery that a higher than expected percentage of patients on carfilzomib has been experiencing some severe cardiovascular issues. Not good. Here’s the link to the Science Day article where I read about it just this morning: goo.gl/vFcSvF

P.S. After publishing this post, I thought I’d double-check the carfilzomib news (I usually do the reverse!) and found out hat these cardiovascular problems have been known for years now. Years! Quite a few studies on this topic have warned about the toxicity of this drug (from 2013, possibly earlier). So this study simply confirmed what was already out there.

And this shows that I am not so up to date on conventional MM therapies…Then again, neither is Science Daily, hehe.

Okay, I need to go check on the mad kittens now (they are SO active!!!), and then go help Stefano with our New Year’s dinner, yum yum. I hope everyone has heaps of fun tonight AND heaps of good food and happiness!

HAPPY NEW YEAR – BUON ANNO, everyone!!! And may 2018 be a VERY HEALTHY YEAR FOR ALL OF US!!!  🙂  

Happy New Year… You Have Myeloma

12.30.17

8 Years Ago Today, on 12.30.09, I Was Diagnosed with “high risk” Myeloma.



Today I celebrate my life, my health (what “little” I have), and all
those in my life that have helped me stay alive for these past 8 years! On this
8 year anniversary of my Myeloma diagnosis, I can’t completely nor adequately
express the gratitude and “surprise” that I am still here to write
this post.

8 years ago today, I
was given a death sentence. 



I had never heard of Multiple Myeloma, as most of you never had either. I
was told a dizzying amount of technical medical information that day, that
changed my life forever. I was unable to comprehend what I was being told. I
sat in utter disbelief. Jim cried. But one of the main statements I absorbed,
was that Myeloma, Multiple Myeloma, is incurable, and I would be in treatment
for life, whatever length my life forward would be.


Was I scared? No. I was shocked. Too shocked to be scared. Totally stunned. This was news that didn’t fit with my life plans, and I just couldn’t fully process what I was told or how terminally ill I was … then, now and for my forever. 

See, on Dec 18, 2009, I had my first painful, reality awakening Bone Marrow Biopsy. It hurt physically and mentally. That was the first slam of my new reality, of how serious my situation was, as up to that point , I just thought I had very low blood counts due to extreme anemia, and a severely compromised immune system.



What I didn’t know on Dec 18, I found out on Dec 30. I was told I had 70% cancerous plasma myeloma cells coursing through my body.  Cancer was raging throughout every part of me, in my plasma cells, in my bone marrow, in my blood, and I was a very sick puppy. 

Dec 30, 2009 I was given a death sentence. 

Today, Dec 30, 2017, incredibly, I have defied the odds. To stay alive, I have ingested and injected more chemo treatments in 8 years than I can count. I have survived a Stem Cell Transplant (July 2010), that many do not. I have responded to new chemo cocktails when my Myeloma numbers were almost 15 times above the high end of normal. In other words, I am a “medical miracle ” and am here to tell you my story. Myeloma is trying to kill me, but so far Team Julie is winning.

Why I have survived against all odds, I’m not quite sure, but I do know my respect for medical science, traditional medical treatments and my own disbelief, perhaps a bit of denial of my situation, is the reason I am still here. I have gratefulness and gratitude beyond words, and feel so incredibly fortunate and blessed to still walk this beautiful earth.


Sunset in my backyard the other day!

I am thankful and grateful for all of you caring about me, and supporting me throughout this unbelievable journey. I am thankful and grateful for my amazing medical team of Doctors, Nurses, Chemo Lab Pharmacists, and all the Myeloma Researchers, that have medically saved my life. I am thankful and grateful for my family, friends (near and far, known and unknown) and my colleagues for being there for me, and caring about me as you have and continue to.



In honor of this amazing life
anniversary, I told my kids I was going to shave my head, and proudly parade
around as a visible cancer patient, so those that just don’t get the
seriousness of my situation might just do so, if I “looked like a cancer
patient”. See, Myeloma is an “invisible cancer”. I don’t have
visible, external scars, that alert outsiders I am a terminal, incurable cancer
patient. You will only see me out and about, or in social settings on the 1 or
2 days per week I feel ok, when I’m not depleted by extreme, immobilizing fatigue,
and chemo side effects, or when I have taken powerful steroids so I am
functional and fun. 


Most patients in the Myeloma club echo this problem. We are told “but you look so good, you can’t be “that” sick”. We have hair, we fix ourselves up, and try to be stronger than we really are. Our fear and worries about illness, sickness, germs and cross contamination are not taken seriously. Sadly most just don’t understand that Myeloma is an Immune System Cancer, that depletes our ability to fight off cooties. Did you know most myeloma patients die from illnesses “normal healthy” people quickly recover from. Our severely compromised immune just can’t fight off germs as a normal immune system can. We can’t bounce back from illness that normal healthy people can. And as I write this, sadly, I am sick again. Again, with a lousy head cold, cough, fever..






Because this is such a huge, monumental anniversary for me, here are my previous blog post thoughts and reflections, on this day, over the last 7 years! Yes, 7 years of Myeloma survival has rolled over to 8! Pretty amazing. So glad I’ve recorded my life and feelings here on this blog…









I will end with words you don’t want to hear, but I need to write them. Multiple Myeloma is a terminal, incurable cancer. We are on lifetime chemo, immunotherapies, any treatment protocol available, or clinical trial we can tolerate, to stay alive. To Just Stay Alive. And just because we look ok on the outside, please do not assume we are actually ok on the inside.


 Here I am Dec 25, 2009 (with my Uncle Murray(RIP)
Me, unknowingly full of 70% cancerous Myeloma cells
How sick, cancerous and “near death” do I look? 

 Dec 25, 2017- How Cancerous do I look here?
8 years later… 
After almost 8 years of chemo, immunotherapies
with more treatments than I can count!


Thank you loyal followers and readers. Thank you for sharing almost 8 years of my life with me. Thank you to everyone that takes the time to read my posts, and care about my life. This blog evolved in a way I never planned. I am so grateful to be here to share my thoughts with you, and hope my thoughts and reflections have impacted your life, as they have mine. 

Wishing you all the best for the remaining hours of 2017, and best wishes for a happy, healthy, rewarding 2018!



Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!





National Spaghetti Day is Jan. 4th!

With delicious spaghettis made from chickpeas, lentils, black beans, edamame and more, EXPLORE CUISINE offers an easy way for everyone to celebrate this foodie holiday while sticking to those healthy New Years resolutions.

EXPLORE CUISINE helps take the guilt out of your favorite pasta meals.  All EXPLORE CUISINE products are vegan, gluten-free, non-GMO and jam-packed with nutrients-  the perfect alternative to other glutinous pastas.

The public relations firm that represents Explore Cuisine sent me samples of these products.

This is on my menu for January 4th. How attractive is this dish??? Cannot wait to make this!)

SOUTHWESTERN BLACK BEAN SPAGHETTI

One Serving-

Ingredients:

1/4  box Explore Cuisine Black Bean Spaghetti
1/2  zucchini spiralized into “noodles”
1/4  Red Bell Pepper
2 handfuls baby spinach
1/4  cucumber
1/4 cup corn (canned in water works great- just rinse them)
1/4  avocado mashed with fresh organic lemon juice
1 tbsp vegan cheese  (I’m using Leaf Cuisine Plain Cream Cheese) pumpkin seeds + dill for garnish

Instructions:

Start by boiling a big pot of water for your black bean spaghetti. Once boiled, add the spaghetti and let cook for 6 minutes.

Once done, remove from heat, rinse under cool water and set aside.

Prep your veggies! Finely dice your cucumber, bell pepper, mash your avocado, spiralize your zucchini.

Next, add a spicy adobo chipotle sauce to your noodles and zucchini noodles.

• Combine the ancho and guajillo chiles in a large bowl and add plenty of cold water to cover. Let them soak until soft, about 30 minutes.
• Place the soaked chiles in a blender along with the ginger, cumin, salt, and pepper.
• Blend until very smooth. Stop the motor a few times to scrape down the sides with a spatula and give things a stir, just to make sure everything’s getting puréed. Don’t be tempted to add liquid—you want the final sauce to be thick.
• Scrape the purée into a small bowl if you plan to use it soon, or into a jar with a tight fitting lid if you want to save it for later. It’ll keep in the fridge for up to 5 days, or in the freezer for 3 months.

Add a few handfuls of baby spinach to a big ‘ol bowl. Add some noodles, guac, then add cucumber, red bell pepper, vegan cheese, pumpkin seeds, and freshly chopped dill!

Enjoy!

http://www.explorecuisine.com/blog/en/recipe/southwestern-black-bean-spaghetti/#

(I’ll post another recipe or two next week, but wanted to put this one out for National Spaghetti Day!)  I’m excited to try these products.

Ending 2017

Goodbye 2017.

It has been a great year for me. I know some people have not had a good year including my sister who has had some serious health issues. I guess it’s all about how you experience the year with health, finances, family, work,  and just life.

I’m so grateful my health has been good and I think that’s the main reason this has been such a good year. I think that makes all the difference. Even money or finances take a back seat to health issues. If you’re in relatively good health, I think you can handle whatever comes your way.

We had some great camping trips and work trips too. I always love going to Santa Barbara with B when he has to see the co-ops. It’s such a treat. This year I went up to the North Coast for the first time with him too. Eureka is a bit of a depressed area but the co-ops are amazing. so that was fun. Plus we camped at new Brighton twice and that was lovely especially going to Gayles Bakery. It’s the best!! Camping at Lake Tahoe always tops my list of the best things that have happened. This coming year we may do things a little different in regards to Tahoe. And I still haven’t booked any camping trips yet.

Learning how to Lodge cook was lots of fun and I ended up with 2 Lodge camping pots. It was such fun to cook a pizza in camp and other great recipes like chili topped with corn bread and breakfast casseroles.  Such fun!!

Our finances were good and we were frugal yet got quite a bit done around the house. We even bought a wood splitter on sale for B to use. It was bought with one of his bonuses so that made it even better. We still have some big chunks of tree to deal with and I’m hoping this coming year we can take 2 more Ponderosa pines down so there will be more to split. Food and groceries in general still seem to be our biggest variable expense so I’m working on looking at working on that. I do menu plan and plan my Costco trips but food is just so expensive. I’m tracking food, non-food and pet food and this may give me a better idea of where it’s going. We ended December with just under $1000 for food, nonfood, Christmas food, alcohol, and pet stuff. Most months I run @ 600- 700 so that’s high. Although the Costco trip had gifts in it so I could reduce the amount by that and then it’s maybe $800.

I continued to declutter right up to Christmas and as a matter of fact, have a small load in the back of my VW to go into the thrift store.  I would guess this year I’ve gotten rid of 2000 things. many just small but others not so small.  For next year, I’m going to look at each room with a critical eye and see what can be improved. That should be a fun project.

Well, I’m making a whole wheat bread in the Zojirushi on the dough cycle and then I’ll bake in a pan. It’s a king Arthur WW bread recipe and so far looks good. Then I just finished baking the butternut squash for soup tonight and made a batch of mashed potatoes to freeze for when I make a shepherds pie on Monday.

So I’m off to read a bit and decide if I’m going to town.