Bad DJ

I got two turntables and a microphone.
Where It’s At – Beck

Checkup … KFLC = 698 … κ/λ = 116 … Hb = 10.2 … Neutros = 1.60 … 

Lyndon got a set of digital decks for Christmas. They’re very cool, though it will take him – and me – a while to get any good at syncing two tunes. I have the same problem more generally.

On one deck, spins Christmas – presents, drinking, going out, staying up. I’m not a fan of novelty records, nor reindeer, nor turkey, but I love the family time, playing games and hanging out. On the B-side, New Year has always been good to me. This year, quietly. And then, spin the next disc, we’re into the winter season, kids at school, Marisa back to work. The discs stack up; seasons ahead; 2018 in a playlist.

Meanwhile, on the other turntable, I’ve found myself returning, more rapidly than I was ready for, to the Kingdom of the Sick. And this one’s definitely a long player. Painkillers have gone from occasional to regular. Symptoms I’d largely forgotten have re-emerged – most significantly in interrupted sleep; but also in rib pains and spasms, restricted movement, discomfort going from sitting to standing, fatigue and so on. I’m popping pills merrily: oxycodone, co-codamol, amitriptyline, adcal – up to ten a day. And I’m squaring up to the treatment I now clearly need. Today I sign the consents for “Myeloma XII”. Next week I’ll have a BoMB, and various other tests. Cycle one day one – my first dose of ixazomib, thalidomide and DEX – is probably just three weeks away. I am the first patient at King’s to go on this trial (though there are others, elsewhere, ahead of me.) It’s a phase III trial – we know the drugs work. But DrC reminds me today, in no uncertain terms, that he really doesn’t know what happens if one takes these drugs in the combinations they plan for me (particularly the “augmented” transplant part, if I end off being randomised for that).

I’m not doing a great job of mixing the two tunes. Their rhythms are too different, their melodies clash.

We hosted a pre-Christmas party, 24 hours after I’d changed my painkillers. Foolishly, I ignored the warnings on the label, forgetting that my tolerance levels would be low. Those who stuck around to the end – and my family who had to share the following day with me – saw how I messed that up. Just one visible demonstration of a deeper ongoing issue for me – I’m leading two quite disharmonious lives.

I’ve just two new year’s resolutions for 2018
1) Stay alive
2) Stop chewing my nails

So far, #2 is proving harder. But it’s peculiar – and not easy – to look at the year ahead and know that my doctors’ hopes for me, my family’s hopes for me, and my ambitions for myself are basically just to get through it. I’ll do my best to sync to the other deck, to participate in the lives of those around me, as I can. When I mess up, which I will, I’m sorry.

Pick yourself up off the side of the road, with your elevator bones and your whip-flash tones. Members only, hypnotizers; move through the room like ambulance drivers.

Where It’s At – Beck

Waste not….

Oh the hang ups of childhood. I should throw away the “Christmas baddies” and start my healthy eating, but I have never been able to throw food away, even if it is sugary and fatty. For today I will simply tell myself that the last day of the twelve days of Christmas isn’t until tomorrow. 

I still have a jar of Danish Pebernødder


labs

So my total cholesterol can back high at 221. High end is 200. So over but the number they use is the LDL and that number was 118 and the high they wanted was 130 so I should be fine. Plus the ratio was pretty good at 1.51, the high end is 3.0 so overall I’m fine with it all. I didn’t see the glucose fasting test so I was pretty peeved and I’m not doing another fasting test so, either he can use my non-fasting results from my regular labs which were 89. the number that they want is 139 or lower. So that should be fine if they can use that. But I’m not fasting again at least until next year.

Well, today was a gym day and then a bunch of chores.

But I got a nice book from NetGalley so I’m going to go read.

Dinner is ?

New Year Survival Tips


The holidays can be joyous with plenty of cheer, but as we leave those festivities of 2017; you may continue to fester the continued reality of your multiple myeloma. The reminder that beginning or continuing your goals to beating this illness is still fresh and a part of your new year’s resolution. 
New Year Starter Survival Tips
Family and Friend Time
I know many embraced the time they have with loved ones for the holiday, but now more than ever you’ll need that bond for 2018.  Having those who care for you no matter what life brings your way can settle your peace of mind. The elephant in the room is real – now it’s time to beat this with those who you trust to hold your hand through the process.
 
Eating Resolutions
Okay, the holidays are over and if you’re lucky you’ve gained a few pounds. I say this as too often we can’t stomach a lot due to the exhausting meds. Well now it’s time to stay on a regimen that allows you to intake a proper diet. Though some are fortunate to eat without any issues, care should still be taken in building those necessary nutrients.
Vitamins
Popping another pill while going through other medication can be daunting; However, adding vitamins to your regimen is a must! A multivitamin can help build up a weak immune system. The research is out there, it’s just a matter of finding the right fit.
Reflection of the Future
At some point that elephant has to be addressed, and addressing your new life with a positive ” I can beat this attitude” makes all the difference in the world. Get your game plan ready to move ahead in treatment, new team, clinical trials, whatever it is to allow you to move forward. 
Cheers my fellow MM survivors- may the New Year be positive, prosperous and healthy….Smile, You’ll get through this.
Peace!
Y

Dieneke in the news

Well, well, I am so pleased for Dieneke! Her myeloma-curcumin story is still in the news, even after all these months (I first reported on it in August).

But what surprised me was to discover (today) that the Italian news has also picked up her story, as you can see here: goo.gl/sCKzkA

And the Times, too (in addition to many British papers, of course): goo.gl/bnefDA

Well done, Dieneke!

100% REAL – 100 Insanely Good Recipes For Clean Food Made Fresh

The publisher was kind enough to send me a copy of this beautiful hardback cookbook.  It’s a big 256 pages loaded with 150 color photos. Mr. Talbot shares these recipes using NO ARTIFICIAL COLORS OR FLAVORS.

This is right up my alley!  I’ve read some of his other cookbooks and really like the guy.

Take a PEEK Here!

Celebrated Chef Sam Talbot Keeps It Real In His Clean Eating Cookbook

Celebrated chef and healthy-living expert Sam Talbot shows us how to make wildly delicious, nourishing food—using healthy, wholesome ingredients.Bursting with 100 whole-food recipes and down-to-earth advice about clean eating, this cookbook proves that eating 100% real food is an enjoyable choice you can make every day. Chef Sam Talbot’s nourishing dishes are overflowing with natural flavor and free of processed ingredients, questionable additives, sweeteners, or preservatives.Packed with vibrant personality and more than 150 photos, this cookbook is a real-world guide to un-junking what we feed ourselves and our children. Sam explains how to find seasonal ingredients and offers tips on stocking your pantry with game changing ingredients, like coconut oil and chickpea flour. Many recipes are gluten-free, vegan, vegetarian, or dairy-free.Forget fat-free, low sodium, zero trans-fat, and the like—the hottest new food claim is not needing a claim at all. Eat. Real. Food.

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.