Week 160 of chemo complete: Not into negativity

There are everyday challenges living with multiple myeloma while on chemo. It would be easy for me to dwell endlessly on the tasks I’m no longer able to perform, the activities that I can no longer participate in, or the permanent changes to my body due to long-term treatment. However, I believe that type of negativity would make me sad, isolated, and feeling sorry for myself.

Instead, I emphasize positivity in my life. I focus on what I can do and count each day I get out of my bed as a success. I counter chemo side effects and symptoms of my disease (both known and unknown), with a belief that cancer will not bring me down. I do fun things that make me happy. I try to laugh each day.

I like to reward myself with mental gold stars each time I do something challenging such as navigating transit successfully to visit a friend, helping someone lost with directions, or coordinating my next specialist appointment. Emphasizing my successes helps me maintain a positive outlook on life. I’m all about moving forward, at a pace that is acceptable to me.

Cancer is what I have, it is not who I am.

Week 160 of chemo complete: Not into negativity

To recap: On Sunday, March 4th, I completed Cycle 40 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 - Canada GeeseMay 2014: Steveston – Canada Geese

The post Week 160 of chemo complete: Not into negativity appeared first on Fade to Play.

Fun St. Patrick’s Day Ideas

We have become HOOKED on EXPLORE CUISINE.  Although I’m strictly a Corned Beef gal on St. Patrick’s Day, I made one of these earlier this week.  Love their products! 

With Dom’s cancer returning, I’m trying to focus on HEALTHY.  These products are free of artificial colors. Explore Cuisine integrates beans, peas, lentils, and rice to provide you with nourishing meals which are easy, quick, colorful, and simply delicious!

All Explore Cuisine products are vegan, gluten-free, non-GMO and jam-packed with nutrients.

This was delicious!  I adore Pine Nuts!
Green Lentil Penne with Deconstructed Pesto

INGREDIENTS

1 package Explore Cuisine Green Lentil Penne – cooked, drained
2 T. olive oil
3 garlic cloves, sliced thin
Handful fresh basil leaves, rough torn
salt and red chile flakes to taste
3 T. pine nuts, toasted
Parmesan cheese (optional)

DIRECTIONS

Heat oil in a small sauté pan
Add garlic and cook one minute
Toss penne with garlic oil. Gently fold in torn basil
Season with salt and chili flakes
Garnish with pine nuts
Add cheese if desired

I’m going to whip this up in a couple of days.  (In between doctor appointments).  The pine nuts got me again! 

Organic Edamame and Mung Bean Fettuccine in a Light Pesto Sauce


INGREDIENTS

7 oz. Explore Cuisine Edamame and Mung Bean Fettuccine – cooked and drained
2 large yellow squashes, peeled into ribbons with a peeler
3.5 oz. pecans – peeled & halved
1/2 cup pomegranate seeds
3 oz. pine nuts

LIGHT PESTO SAUCE

1 large bunch of fresh basil
2 cloves garlic
2 oz. olive oil
2 tbsp pine nuts
1/2 tsp coarse sea salt

COOKING INSTRUCTIONS

Peel skin from garlic cloves, and chop into big chunks.
Using a food processor, pulse basil, garlic, and nuts several times until finely chopped.
Add the salt and olive oil, pulse until blended. Pesto may be thick, so add more olive oil for a looser consistency.
Lightly toast the pecans, pomegranate seeds and pine nuts in skillet.
Mix the fettuccine with the sauce, gently fold in the remaining ingredients.

Serve immediately.

Marching Forward

3.8.18

Hello March! Yes, March already! It’s Myeloma Awareness Month. When I was first diagnosed, not many people I encountered knew what Multiple Myeloma was, (me included). But as my 8 years living as a myeloma patient have passed, I meet more and more people that have heard of myeloma, or know of someone diagnosed with myeloma. As I write this, I shake my head, forever having a difficult time connecting me to myeloma. It will always be an out of body experience for me. Still don’t get how it found me…

I did Labs yesterday, and will find out my myeloma stats on Monday March 12, when I have my next Dr appointment and Darzalex infusion. But I am able to see my CBC stats, organ function stats, and my Beta2 Microglobulin online. Here they are:

Most of my CBCs are pretty good, except of course my WBCs. 21 days of Pomalyst, 20mg weekly of Dex steroids, monthly Darzalex, and of course the ravages of myeloma, do my immune system in.

Additionally my ANC is pretty low at 1.4, but hopefully not Neutropenic status… we’ll see if my Dr recommends Neupogen Zarxio shots for a few days…

And finally, this was a tiny happy surprise, with my Beta2M going down .1
Not much, but I’ll take any downward direction that comes my way :)
Crazy how high it was in 2009 at Dx @ 4.6, then in 2016, @ 4.7, then 4.6 just last year, prior to starting Darza, Pom, Dex! Still outside the “normal” range, but staying steady low-high for a year now, thank you triplet cocktail. Where did you come from myeloma, and how did you find me… Grateful for 8 years and counting, and for the “relative good health” I do have. Fatigue debilitates me. Headaches surprise me. Aches and pains annoy me. But thankfully I don’t have the extreme GI issues I did with my previous treatments.

Life is busy with our new little rescue, who is more of a puppy than I expected. So adorable, so full of life, so healthy, so happy, so jumpy-bouncy, so much joy to share. He’s doing great with potty training, as long as I make sure to let him outside regularly when he’s inside. At night, I have him cozy in a soft tent-crate, and he seems to love that, and sleeps all night without a problem. When the weather’s nice, all the doggies are outside for most of the day, so that makes it easy and natural for them.

I took little Jack to the Vet for his complimentary shelter rescue health exam. So funny how my life is so medical oriented on so many levels. He did great, and is in excellent health. Isn’t he just so cute in his doggie seat-belt harness :)

Perfect little traveler and patient

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

Visiting the land of Nod…

For some unknown reasonzzzzz, 😉 articles about sleep deprivation zzzzzz have been popping up on my screen lately. Indeed, I’ve been reading about some rather scary stuff, such as the fact that if you don’t get enough sleep your brain will start eating itself (nope, I’m not kidding!). How about that for the freaky fact of the day???

This morning I came across another sleep-related article, titled “What’s another hour of lost sleep? For some, a hazard,” which I found so riveting, in a good sense this time (no super scary stuff, I mean!), that I decided to post about it. It’s a Harvard Gazette interview with Jeanne Duffy, an associate professor of medicine at Harvard Medical School and a sleep researcher at Brigham and Women’s Hospital.

Here’s the link: https://goo.gl/wMF3qY

Prof. Duffy gives us heaps of food for thought…or rather, one would hope, food for sleep! Hehe. 🙂 Here’s an excerpt, e.g.: “[…] getting inadequate sleep makes your immune system less efficient.” That sentence alone should make us want to visit the land of Nod… 🙂

Anyway, a highly recommended read, even for those who think they are getting enough sleep…

Fuoco di Sant’Antonio, shingles, herpes zoster…

Stefano had been complaining recently (last week) about a strange sort of pain/ache in his back that began more or less last Wednesday. We thought he’d pulled a muscle or some such thing. But the pain wasn’t going away. When he’d come home from work, and in the morning when he got out of bed, it was ouch-ouch-ouch. I suggested he at least call our GP, but he didn’t want to bother him. He really thought it was a pulled muscle. Then, on Saturday morning, he asked me to take a look. I found a little rash on the left side of his torso, but he said it wasn’t where the pain was.

And so I didn’t make the connection. Nor did he. Not until the rash had spread a bit, which it had by Saturday night. At that point, we both knew what it was, since his father and both of my parents had had it.

Shingles.

UGH!!!

In Italy it’s called Fuoco di Sant’Antonio in Italian, or fire of Saint Anthony.

Unfortunately, we had no way of getting in touch with our GP during the weekend, and my rather stubborn Stefano didn’t want to go to the ER. So he “lost” a day, since, without a prescription, I wasn’t able to get the antiviral drug (acyclovir) for him until Monday morning, after we’d contacted our fantastic GP. And by Monday morning, let me tell ya, the rash had spread all around his torso, in back and in front, and he was in a lot of discomfort.

Well, I didn’t wait until Monday to take action. On Sunday morning I made a paste with organic turmeric and a bit of water, which Stefano spread over the rash. Incredibly, the rash stopped burning and itching. It did NOT stop the rash from spreading, BUT the area covered by the turmeric paste didn’t burn or itch at all, whereas any new bumps that developed  during the night itched and burned like crazy. Once he’d covered those bumps with the turmeric paste, though, the burning and itching disappeared completely.

This is how we knew it really worked.

And that’s why I’m writing this post today, with Stefano’s permission…because it’s a bit of good information that can be given to anyone who has shingles. As I noted, the turmeric + water paste will NOT stop the internal nerve pain caused by shingles (you need antiviral meds for that…), but it might stop the superficial burning and itching. I use the conditional tense “might,” because of course we all react differently, even to the same drug or treatment. But his case is a rather nasty one, and his skin should be itching and burning like mad. It’s not. Not at all.

The first few days (from Saturday night to yesterday morning) have been the most difficult. Last night he managed to sleep without any trouble. So I think the acute phase is over…And we can relax a bit…

Anyway, I’ve found another use for turmeric! Of course, it’s nothing new to Ayurveda…but it was to me! 🙂 

Friends

Thank you for the party, but I could never stay. Many things, on my mind. Words, in the way
Thank You (Falettinme Be Mice Elf Agin) – Sly & The Family Stone

Thank you

The last few weeks have been hard. On top of everything else, a virus finally got the better of my immune system at the weekend. In combination with the aches, the anaemia, the endless cycle of drugs, the long time horizon in front of me… it all adds up. I suspect that the relentless bloody anaemia is the real villain. I’m getting by with about a third less blood than my body really needs. I’m heartily sick of the whole thing. No matter how soon now it feels better, it will not be soon enough. I posited an idea to Marisa the other day – conjured out of my imagination – that maybe the sudden death of myeloma cells could be a cause of sickness and pain all of its own. It turns out, with a little research, that this is a real thing – “tumour lysis syndrome”. So maybe I’m feeling unwell because there is a lot of dead stuff in my bone marrow, and associated crap swilling in my depleted blood. That’s one possible, positive, explanation for where I am. But whatever the reality, I simply have to persevere. It’ll be a month or so before we’re in any position to review progress.
So… I’m feeling a little better today… my head is above the water… I want to take the opportunity to acknowledge the group of people who are quietly, unobtrusively propping us up, right now.

I’m writing this post to say “Thank You”, to you.

You know who you are.

When I’m least well, it actually falls harder on Marisa and the boys, than it does on me. Because they have to keep the normality going. Home life is not the same with a partner/parent who is only half present. One who rarely makes it to the breakfast table. My role, by comparison is straightforward. I just have to take the pills. There’s not a lot of point me moaning about it, either. Myeloma looks a lot like laziness – as long as I just lie around doing nothing, I’m normally OK.
So I am very, very grateful to all of you who are doing so many things to make it less arduous for those who have to live with me! You are oiling our wheels by helping the children get to and from their schedules. You are bridging gaps (or papering over cracks) by including them (taking them out sledging, for example, last week). You are ensuring that they get out of the house, and that their lives are not constrained by mine. You are feeding us – heart (cake) and soul (meals). You are there for Marisa to hang out with – whether its a mid-week evening or a last-minute loose-end Sunday. You are making plans with me, and then not caring when I endlessly cancel and reschedule. And a load of other things too.

Taking an interest in us. Checking in on us. Looking out for us.

You are quite a big group of people, which is very flattering. Some of you are further away, from where it isn’t always easy to make a hands on practical difference. But it really does make a difference, to us. All of it. Every outstretched hand. I cannot conceive a better definition of friendship. I won’t get to thank you all face to face. Anyway, it would undermine the whole interaction if I did. So…

Thank You. All of you. I cannot really express how much it means to me.

Maybe I was naive to imagine that I might sail through this chemo less grimly than last time. Though I suspect, with a little hindsight, this will transpire to have been a relative blip. However it pans out, I know a much more profound “blip” awaits us later in the year when I have to go through another SCT. Only after that will we be able to stand on our own 10 feet again. In the mean time, stick with us, please.
There’s some very nice soup in the fridge, which is where I’m going now.

Today is my 5th “birthday” since my SCT in 2013. Almost five years treatment free. Hopefully, that will be the pay off from SCTv2 too. I looked back through 5 years of posts on dialm, wondering about the most important question… which artists get most airtime. Only three have featured three times: Neil Young, David Bowie, and Tame Impala (who are a special case… where dialm started). A few more have appeared twice: Foals, Primal Scream, Ride, Rudimental, Scissor Sisters, Simon & Garfunkel, Teenage Fanclub, The Shins, Smashing Pumpkins. That seems like a fair snapshot of me. My music collection always did have an unexplained overweight to the letters P, R, S and T. Is this relevant? Is it even interesting? I have a feeling the steroids are kicking in again… which will be my subject matter when I next write…

Seriously Good Freezer Meals: 150 Easy Recipes to Save Your Time, Money and Sanity

The publisher sent me this today. 

It’s a beautiful 368-page cookbook loaded with full-color glossy photos.  As Dom and I are now dealing with Dom’s cancer once again, things will be chaotic with doctor visits.  This cookbook will be used- A LOT!

Don’t Freeze Up at Meal Time — Reach Into the Freezer Instead

Let’s admit it: we all want to save time and money while still putting healthy and tasty homemade food on the table. But how? Karrie Truman, creator of the much-beloved blog Happy Money Saver, is going to let you in on a secret: the answer is freezer meals.

When she was an exhausted young mom, Karrie found herself serving processed or fast food at the end of a busy day even though she knew it wasn’t what she wanted her family to be eating. Then she discovered freezer meals. Immediately, she had home-cooked, easy and delicious food at her fingertips and more time to spend with loved ones.

In Seriously Good Freezer Meals, Karrie shares 150 recipes photos that will change the way you think about freezer cooking. You won’t find your mother or grandmother’s freezer meals here (except lasagna, of course). Her recipes include Morning Energy Bars, Empanada Hand Pies, Coconut Cashew Basil Curry Soup, Smoky Grilled Louisiana Turkey Legs, and Layered Chocolate Mousse Cake with tons of vegetarian, gluten-free and vegan options, too. Plus, she adds a bulk-batch chart for ease in making large quantities of each freezer-meal recipe.

Karrie gives you all the tools you need to become a freezer-meal genius: information on shopping, cooking, freezing, thawing and everything in between. The book includes beginner, intermediate and advanced meal plan programs to guide you in cooking 7 to 50 meals in a day. You read that right: 50 meals in a day. No more excuses: it’s time to start cooking delicious meals that will have you feeling anything but left out in the cold!
Get it HERE

Hi! I’m Karrie Truman, wife, mother and author of the blog happymoneysaver.com. Growing up in a large family I’ve always been keen to find ways to cut costs and more importantly time. I try hard to live my dream of spending time my family while still having tons of fun (sometimes trouble) by living life to the fullest. You know, doing crazy things like making 50 freezer meals in a day, raising chickens, learning to make things the old-fashioned way, and dancing to 80’s music while cleaning my house.

I live and blog out of Eastern Washington with my husband and four amazing kids who keep me running around and steal my heart. 

My website happymoneysaver.com helps folks find delicious recipes, learn ways to live life to the fullest while on a budget, make things from scratch, and learn to try try again when things go wrong. My goal is to keep you all cooking in the kitchen and laughing along with me when things don’t always go as planned. 

175 Best Multifunction Electric Pressure Cooker Recipes

Dom recently bought me a pressure cooker, so I was tickled to receive this cookbook from the publisher!
This is all new to me, but these recipes are very easy to follow.  I’m no longer intimidated by this new contraption!

Delicious meals in a fraction of the time that stovetop or roasting methods take.

With their many function features (some have as many as 7), electric pressure cookers help make delicious and healthy foods that are not only easy and quick to prepare, but use much less energy. Clean up is minimal, too.

Bestselling small appliance cookbook author Marilyn Haugen uses her expertise to create rewarding recipes for this ingenious small appliance. There are recipes for every meal of the day. In a hurry? Done. Low and slow? Got it. The perfect stew or roast? No problem. Entertaining? How about Coq au Vin with Creamy Mashed Potatoes?

Haugen has created super time-friendly recipes for those frantic mornings like Sausage, Hash Browns and Pepper Casserole or Quinoa, Millet and Almond Bowls. And even on the busiest of work weeks, Beef Barbacoa Tacos with Chiles can be on the table in no time flat. Butternut Squash, Quinoa and Pomegranate Casserole made the night before can just be reheated.

These inviting recipes are sure to become family favorites that will be requested time and time again. The home chef can impress family and friends with the wide variety of satisfying dishes effortlessly created in an electric pressure cooker.

Take a Look Inside HERE

It’s Monday!

It’s Monday and it’s SUNNY! Gee, a few days have gone by and not much has happened. Just my day to life.  BTW, my sister did start her chemo last week. 3x weekly. That’s definitely tough. I hope it goes well for her. I’m still planning to fly to Conn sometime maybe May or June.

I’m needing to find some new blogs to read, any suggestions? Some of the ones I used to read are just boring me ( not you Spo!!), or I’m not interested in seeing them post pictures of themselves constantly. So, It’s been kinda bleak. I do learn so much from other bloggers and enjoy the insight into their lives. Especially minimalist ones. I do like some of the big name bloggers but mostly I enjoy people who have normal everyday things going on.

So I went to Goodwill yesterday looking for a vase for the Farmgirl Flowers and found a lovely milk glass one thats called Hobnail Milk glassIMG_1269.jpg.

Then I like it so much I went back for a small bud vase as I want to dry the eucalyptus.

IMG_1268.jpg

I don’t know if this has a name or not. I got this for .60 ,not bad!!  Now I’m really liking the white of the milk glass so I’ll look for some more to put plants in.

I’m off to shop at Grocery Outlet and then Staples for printer ink.

Dinner is unknown at this point. I guess I’d better work on a menu. Probably tofu something.

 

Writing About Writing

A handful of words will get a foot-hold in my mind, something someone said or something I saw.  It might be a deep memory coming up for air, a thought that becomes the birth of an idea.  Once it begins to form, I’ll pour it out in bulk and then re-write – edit – re-write – edit, back space like a machine gun, highlight and drag to move.  And the punctuation!  Will a comma do for the perfect hesitation, a colon; or should I go all out with……. repeating periods?  And then, does anyone even notice words in italics?  Maybe I should break that mile long freight train into two or three sentences.  Blatant repetition?  Open the thesaurus!  I love writing the construction zone phase (if the idea survives it).  Yeah, BOLD!  BOLD CAPS – OUTSTANDING!!  And what about those curved bracket parentheses (probably overused)?

And then there’s the circle, that elusive, sweet – satisfying, return.  I’m sure real writers have a term for it.  If the words I’m brewing are great enough in number, and if later on, I can circle back to a key element highlighted early on, that can create an especially delightful circle within the story.  I love it when that happens!

Better phrases will knock on my mind’s door when it’s trying to sleep (thinking they’re all that important).  The exact right words will push their way through to the front of the line while I’m driving.  I’m not creating a “Master Piece,” here, but still, I’d better write them down.  I’ll torture myself because I forgot that gem before getting home.  What’s amazing to me is that I can delicately, meticulously replace one little word with another I think conveys better, and impress myself amateurish self with what a critical, but subtle difference that word made.  I will read and re-read again until I can get all the way through without making any (many) changes; sleep on it and read it again.  If I can get to the end without revising, it might be finished.  So now what?  I wrote it for my own therapeutic entertainment, and/or for my personal library.  If I think someone else might enjoy reading it, I’ll probably make it available.  If you read it, you will never know how many words I discreetly pruned or plucked.  You’ll have no idea how many times I read what you’ll read just once.  The funny – “human nature” thing is……  If I’m successful at practicing the magic of written expression, you might come away with something resembling the idea I began with at the top of this page.