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.

Chrusciki and Le Creuset

IMG_1142.jpg Here’s a picture of our traditional ‘Chrusciki’. It’s a polish/European fried dough. It’s not very sweet except for the powdered sugar. My mother made these at Christmas. One of my few memories.

IMG_1148.jpg My fancy new pot. I love Le Creuset and they do last a lifetime or two. As I mentioned my other two are over 30 years old.  I got this great deal where it was on sale and then got another 20% off so still expensive but under $300.

I’ve got all the Christmas stuff down except one swag I’m leaving up for a while because I like the twinkly lights in it.

I’m going to the gym today but no leg work as I must have pulled a muscle behind my knee on Sunday. I’m not sure what really happened but my knee was pretty flipped out the other day and I even only walked one round. Even when I am sick, I try and do 2 rounds so you can tell my knee was hurting.

It’s pizza night but I’m deviating(oh the horror), and making baked ravioli. I have some that need to be used so I’ll make them. Since my daughter is not eating gluten right now, I’ll make something else for her when she gets home from work. She doesn’t get in till 7pm so I whip something easy.

 

 

 

 

Cooking That Counts 1,200 – 1,500-Calorie Meal Plans to Lose Weight DELICIOUSLY

The Editors of COOKING LIGHT sent me this beauty.  It’s a very large paperback, 288 pages loaded with glossy color photos.

As I tend to gain a few pounds over the holidays, I’ll be enjoying this.

Lose weight and love it with 150+ amazingly tasty recipes and smart tips to stay on track.

Cooking that Counts delivers sustainable 1,200-1,500 calorie-controlled meal plans packed with tasty food in an easy-to-use format. Unlike other weight-loss plans that rely on processed meals and preportioned snacks, the Cooking Light solution emphasizes delicious meals prepared with whole, natural foods and teaches proper portion sizes to ensure you lose weight and keep it off, for life.

With more than 150 recipes, readers will enjoy menu variety (hopefully picking up some new favorite recipes along the way!) as well as some flexibility to enjoy desserts and alcohol while still losing weight. More than just a cookbook, the Cooking Light editors offer suggestions throughout to create full meals that meet daily calorie goals, as well as providing simple serving suggestions for sides to help readers stay on track without feeling deprived. Readers will find information about fresh, convenient options for when time is tight, including suggestions for healthy readymade foods, shopping guidance, and make-ahead tips.

About the Author

At more than 25 years, Cooking Light is the nation’s leading epicurean brand with the largest audience, most epicurean editorial, and the most recipes. Cooking Light is the only epicurean brand positioned at the intersection of great-tasting food and healthfulness, serving an important and growing consumer need. The brand delivers innovative recipes, nutrition advice, and resources to live a healthful lifestyle via its magazine, website, and portfolio of cookbooks; across all tablets; through the highly-acclaimed Cooking Light Quick and Healthy Menu Maker app; and on social media platforms including, Facebook (Facebook.com/CookingLight), Twitter (@Cooking_Light) and Pinterest (Pinterest.com/CookingLight). Cooking Light is published by the Time Inc. Lifestyle Group, a division of Time Inc., the largest magazine media company in the U.S.

LOOK INSIDE HERE

Stable is good

The wind almost blew the Christmas lights off our house, okay not really, I took this picture years ago.

I’ve had two MRI’s since my last update. The one in September caused some concern. The Neurologists office called me the same day I had the MRI saying the doctor needed to see me as soon as possible.  I told the nice lady that sounded kind of ominous.  She replied that she’s “sure its just regular doctor stuff, but could you possibly get in there today?”

When I saw the Neurosurgeon the next day, he came into the exam room and said, “I had to see you with my own eyes!”  Did you walk in here unassisted?  Do you have pain shooting down your legs?  Tingling or numbness?  How’s your bladder control?

He explained that the MRI showed a small piece of what was left of my crushed vertebra poking quite sharply into my spine (the T8 vertebra had become a tumor from this cancer, and then it collapsed). He did some push-pull tests on my legs and said if any of those symptoms develop, or if I lose bladder control, to call him immediately.  And then he said, “No, go straight to the emergency room and have them call me.”  I knew there were a lot of people praying for me, so I asked him if my walking and having none of those symptoms might be a miracle.  He said, “I won’t say miracle, but you are VERY, VERY lucky.

September MRI

There was some talk about spinal support (surgery), but the most recent MRI showed no notable change.  The doctor determined that the vertebra had crushed as far as it would go, and since I had no symptoms from the poking bone fragment, he said the potential benefit from surgery would not outweigh the risks involved.   I can feel that poking in my back, but it is not pain. It’s more like a distraction. It’s almost always there, but entire moments do pass when I’m not aware of it. I got the distinct impression that the doctor thought it was somewhat of a medical oddity. I thank you for praying for me, and I thank God for every walking, pain-free day I get. I’ll thank him for all the other days too, but I’m pretty sure I like these better.

I recently had my 3-month Multiple Myeloma cancer test and I found the test results message from my Oncologist on our answering machine today after work, “Stable, the same as before.” That’s a message I can’t imagine getting tired of hearing.