It’s the weekend…

I just realized that I haven’t posted ANYTHING here in days. Ooooooops!

It’s not my fault, really. I mean, even though Florence has been essentially shut down this entire week by the world cycling championships (to be more precise, the UCI Road World championships), my friends have been crawling through the cheering crowds and over street barriers to get to my house and keep me company during my convalescence, so I’ve had a lot of company in the past few days. In other words, I haven’t had time to do much else but relax, you see. Yeah, it’s really great to have…great friends! ūüôā¬†

Yesterday afternoon, as I was playing cards with my above-mentioned friends, Stefano’s cousins arrived from southern Italy and whisked him off to Munich…to the Oktoberfest. Beer and more beer. He’ll be back tomorrow. This was definitely a “guy” trip. Even if I’d felt up to the six-hour drive to Munich (from Florence), I wouldn’t have gone with them… ūüėČ

So this weekend I’m home “alone” with my six kitties, mainly watching BBC drama series (for example, last night I watched “Goodnight Mr. Tom”…a really sweet movie set during WWII in England…cried like a baby, I did…) and Season 9 of Grey’s Anatomy. Ahhh yes, I’ve had a very nice rest. And today I feel normal again. I’m on my computer, working away like a madwoman…

Last week I read an excellent article by Dr. Cathy Kerr, Ph.D., titled “Qi versus cancer.” She wrote the stories of two different cancer patients, one with non-Hodgkin’s lymphoma, the other with myeloma (=Cathy herself)…I’m sure you will find it as interesting as I did:¬†http://goo.gl/ULwwst

Dr. Kerr also gave a very interesting TED talk on mindfulness meditation last year:¬†http://goo.gl/B7V1se¬†Check out this video, too, especially if you have cancer-related depression and pain…This could really help…and it’s only 15 minutes long.¬†

To end on a funny note…I just watched this commercial and had to share it…enjoy!¬†http://goo.gl/XVKRy5

Okay, I need to go off now and watch the first episode of “Call the midwife.” Then it will be time to feed the cats…

Take care, everyone! Ciao! ūüôā

Work in progress

_MG_0272_MG_0249Stefano bought me a new camera while we were in the U.S. this summer. 

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It’s small, smaller than my “old” camera, but it takes really sharp photos…much sharper, in fact, than my old camera, which I will still use for bird watching, mainly because of its long lens.¬†

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This new camera, though, is purrrfect for taking photos of the cats, and so that is my work in progress.

¬†I’ve been taking photos of them almost every day. Such a joy.¬†

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Here’s just a sample…and yes, I need more practice, but in my defense, it’s not easy to take photos of moving creatures who really want nothing to do with a camera… ūüėČ

Hey, isn’t it weird how Prezzemolo looks like two different cats in the first two photos?¬†

Prezzemolo actually looks more like himself in the second photo, the cat tower one.¬†There is some sort of weird light thing going on in the first photo, since I assure you our floor is NOT curcumin-orange but cotto-red (and no, that isn’t because I touched up the photos. The only thing I do with my photos is reduce their size and cut off some of the superfluous background).

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By the way, I was recently informed that Pinga (our white cat with amber eyes, a white and orange striped tail, and a few orange spots on her soft, rabbit-like coat, especially on her head) might be a Turkish Van. Uhm, no, that’s not the name of a delivery company based in Turkey; it’s the name of a long-haired cat breed with genetic origins near Lake Van, in Turkey. Yeah, I’d never heard of this breed before, either…

Anyway, our little Pinga seems to possess a lot of the characteristics of this breed, except that she is a short-haired cat (but I read that there is a short-hair “Dutch” variety of the breed?).¬†

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Pinga is incredibly smart and affectionate (when we’re in bed, e.g., she will lie on our chests and wrap her paws around our necks, purring ecstatically, and she loves to lick our faces, necks and arms, bleah…), very athletic, and she adores water (though I very much doubt we’ll test the Turkish Van’s swimming ability!!!). She is the most affectionate cat I’ve ever had…one of the funniest, too.

Well, she may not be a purebred T.V., but I’m curious, now, even though of course it makes no difference to us…Is anybody here a T.V. expert, by any chance? ūüėČ

No feverzzzzz!

I even did some work today. Ahhh, yes…much better…

_MG_0185_MG_0168And, to celebrate my return to an almost-normal state, today I’m posting a photo I took of our eldest kitty, Puzzola, just last week…two days before I got sick, in fact, ugh. Anyway, that evening Puzzola did something she never does: she jumped up into our ensuite bathroom sink and just stayed there, even when I whipped out the camera (like lots of cats, she is camera shy…).¬†

She’s such a great cat…12 years old (according to our vet, she was born in June 2001…?) and going strong, in spite of the beginnings of hyperthyroidism, for which she is being treated, of course. Anyway, with no further ado, this is our green-eyed Puzzola.¬†

Feverzzzzz!

Wow, I haven’t been this sick in ages…In fact, I can’t even remember the last time I was so sick…

I began feeling a bit “off” on Thursday evening…By the time I woke up on Friday I had a sore throat and a fever, 38¬į Celsius, which is 100.4¬į F. I thought, okaaaaay, here we go again. But the symptoms were a bit different this time. Namely, no sign of a cough. So I didn’t go on an antibiotic. Not immediately, that is…

I slept through Friday, Saturday and Sunday. I just couldn’t keep my eyes open. In spite of all the endless naps, though, I didn’t feel any better. So I finally took my first antibiotic on Sunday night. Well, it got rid of the sore throat, anyway!

On Monday night my fever went up to 38.5, or 101.3. Okay, not a terribly high fever, but after four days of sleep-sleep-and-more-sleepzzzzz, I’d really had it.¬†The following morning I called our family doctor who told me there are a lot of sick people with my same symptoms, and even worse ones. He approved of the antibiotic and told me I’d just have to rest and wait…a week or so…

Rest? Wait? A week in bed? No way. I have too much to do!!! But talking to him and realizing that a lot of people have the same thing made me feel better, I guess. Today I haven’t taken even one nap, e.g. And I turned on my computer for the first time…

Ah, and here’s another sign of improvement: since Friday I’ve had at least three devoted cats with me at all times…lying on me or curled up beside me. Well, today that number has gone down to one (= Pinga, who sleeps on our bed anyway).

So, when the furry little nurses decide they don’t need to be on duty 24 hours, you know you’re definitely getting better. ūüėČ

My favorite town on Cape Cod

IMG_4120_MG_0072Since these photos were in a separate folder (long story…basically, I used a different, smaller camera from the one I usually use…), I almost forgot about them! But then yesterday I remembered.¬†

And how could I NOT put up photos of my favorite town on Cape Cod: lively, colorful, fun Provincetown (or P’town, as we call it)?¬†

So here are some of my quirky shots of P’town, taken on the day we went whale watching with the Dolphin Fleet…I took photos of things that struck me…and of people, of course.¬†

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In one photo, e.g., you will see (on the left) a guy dressed up in a Dalmatian costume. I suppose he and his friend, dressed in a long cape and white boots (= playing the part of Cruella de Vil, the evil character in Disney’s “One Hundred and One Dalmations”) were publicizing a show, but I’m not positive about that…¬†_MG_0013

Anyway, whatever…they were walking up Commercial Street in P’town, chatting with people…and now and again the “dog” would suddenly fling himself on the ground and do some funny, cute, entertaining things.¬†

For instance, he’d put his “paw” out to gently touch children in strollers (the children were absolutely mesmerized…it was so incredibly sweet, but I didn’t feel I should use any of the adorable photos I took…privacy issues, you know…)…or he’d grab people by the leg or legs and, well, just hold on. Hilarious to watch people’s reactions.¬†_MG_0058

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And yes, you guessed it…the latter happened to me, too. ūüôā I suddenly felt my legs getting grabbed from behind as I was walking along, taking photos…and I was so startled that I let out a verrrrrry loud shriek. Surprise!!! I couldn’t move. The “dog” was embracing both my legs. So I just kept laughing. And petting the “dog” on the head. You never know what ¬†is going to happen to you in P’town! And that’s the fun of it!¬†

My¬†photo of a rainbow peace flag in P’town here on the left: I didn’t know it would mean so much to me right now, in this period of terrific apprehension…

Peace.

I hope. 

Should we change our attitude about stress?

I love TED talks (TED stands for Technology, Entertainment and Design, in case you’ve ever wondered, like I have). I mean, even if I’m not even mildly interested in the TED topic under discussion, I watch the video anyway, sometimes, because I always learn something. And learning new things is exercise for the brain, right? Plus, truth be told, I’m a curious gal…and my curiosity, in fact, has probably saved my life, certainly my quality of life…so curiosity can be very good (even though it apparently, er, “killed the cat,” eh ūüėČ ).¬†

Often, though, the TED topics are relevant, relevant to us myeloma folks, I mean. The TED talk I’m about to introduce is a case in point. First, though, I need to thank Julie for sending me the link to this talk on STRESS.

Ah, yes, stress.

I’ve always maintained here on the blog, that stress is bad for us. Very VERY bad. This is based on what I have read about the stress hormone norepinephrine, which is involved in myeloma progression, according to a study published in 2008, a study that we should all know from top to bottom, a study that I’ve posted about, and referred to, numerous times here on the blog… (see my Page on myeloma and stress, on the right).¬†

But what if stress were actually NOT so bad for us? What if we found out that what is bad for us is actually our ATTITUDE about stress? 

According to¬†Stanford University psychologist Kelly McGonigal, if you BELIEVE that stress is bad for you, you are at more risk of…dying. Yes, dying. No kidding. Simply by having the wrong attitude toward stress…

And then she asks the question: can changing the way we think about stress make us healthier? The science says YES, she answers. 

Yes?

Could that be possible?

Without further ado, here’s the link to Kelly’s fascinating TED talk. It’s less than 15 minutes long, so it won’t take up much of your time…and it may change your attitude/s toward stress and make you lead a healthier, happier life…¬†

Now I am really curious to read the University of Buffalo study that Kelly refers to in the second half of her lecture…I want to learn more about this “attitude about stress” business, because that myeloma-stress study has always been in the back of my mind, so I want more information…

One thing is for sure, though: I’m going to start changing the way I feel about stress…I mean, it can’t hurt…and it could possibly give a boost to my impaired immune system, which is always more than welcome…

Anyway, this video is a totally fascinating…I highly recommend it:¬†http://goo.gl/EbJpxG¬†

Besides, where else are you going to learn about the “cuddle” hormone? Hehe.¬†

More photos…

_MG_0054IMG_4099Since yesterday’s photos received so many lovely comments and compliments (on my blog’s Facebook page, mainly), for which I thank you all!!!, I thought I would upload a few more, which didn’t make it into yesterday’s selection…_MG_0091

IMG_5355By the way, if you hover (the mouse) over the photos, some will have a brief description. Not all of them…just some…IMG_4935

Enjoy! ūüôā

 

 

 

 

 

 

 

 

 

Good or bad for myeloma? That is the question…

A HELP PAGE created in June 2011

[Work in progress…suggestions appreciated…]

Last month, a blog reader, = a research scientist with myeloma, suggested that I create some sort of ‚Äúmaster listing‚ÄĚ that would¬†make it easier for readers¬†to locate stuff.¬†Good idea. I’ve realized for some time now that my blog has gotten a bit out of hand, as the¬†saying goes. There is an amazing amount of information here (a lot of which comes from you, my readers!). Unfortunately, compared to a proper website, the blog format is a bit constraining, so I wasn‚Äôt able to¬†get toooooo creative. Still, I hope that what I‚Äôve done¬†will be of¬†help‚Ķespecially to new readers… ūüôā

In 2007, when I created my blog, who’d have thought I would find so much material? Back then, what I knew about anything¬†“alternative” could have fit into the smallest pocket of my jeans. I had no idea that there were so many studies on non-toxic, anti-myeloma substances out there. And now there are even more…It‚Äôs encouraging‚Ķbut frustrating at the same time, when you realize that most of it, most of this amazing research,¬†gets totally ignored, even the most promising items, mainly because it‚Äôs not profitable‚ĶThat is why our role, as patients, is so incredibly important. And we can make things change. Many MM doctors know about curcumin (no matter what they think about it, they KNOW about it) now. That was NOT the case when I began taking it (Jan 2006). But I digress, as usual!

Point is, my blog eventually became this huge, er, THING…daunting even for me, the creator/researcher/writer. I mean, I¬†sometimes have trouble remembering¬†if I’ve¬†already written about a certain substance and have to double-check my own blog, using the Search box…Speaking of which, when I revamped my Page section, I put the blog Search box at¬†the top, where I have also now put the section devoted to readers’ comments, which are always fun and interesting¬†to read‚Ķinformative, too!

At any rate, I hope what follows will make things easier for you, and perhaps even for me…Okay, ’nuff said. Let’s dive right in…By the way, if I do NOT put a direct link next to the item (below), it means that I’ve written too many posts about it…so you should just do a search of my blog or, if you can‚Äôt find what you‚Äôre looking for, just contact me directly…

POSSIBLY BAD STUFF:

POSSIBLY GOOD STUFF (Check under “Other anti-myeloma/cancer substances”). Here is a list of stuff I’ve tried:

  • Curcumin, C3 Complex (in various clinical trials)
  • Fish oil, molecularly distilled (clinical trial, MGUS/SMM/CLL patients)
  • Quercetin (no more than 1.5 grams)
  • Vitamin D
  • Ashwagandha/Indian ginseng/withanolides (an interesting ashwagandha/curcumin trial in osteosarcoma is recruiting patients right now)
  • Resveratrol (see my notes on the terminated SRT501 trial)
  • EGCG/green tea (clinical trial, MGUS/SMM patients)
  • Saw palmetto/Serenoa repens
  • Reishi/Ganoderma lucidum (need to retest; ran out of capsules…)
  • Black cumin/Nigella sativa
  • Scutellaria baicalensis/Chinese skullcap
  • Capsaicin

Now for stuff I still haven’t tried (and may never try…either because it‚Äôs too risky/toxic or because I haven‚Äôt found a reliable, affordable AND safe source):

  • Betulinic acid
  • Boswellia
  • Butein
  • Cardamonin
  • Ciclopirox olamine (clinical¬†trial, patients with relapsed or refractory hematologic malignancies) and Piroctone olamine¬†(these are both anti-fungal treatments)
  • Cyclopamine (possible eradication of the MM stem cell; BUT too toxic to try, in my opinion)
  • Emodin/turkey rhubarb
  • Genistein
  • Guggulsterone
  • Hesperetin
  • Honokiol
  • Kinetin riboside
  • Moringa oleifera
  • Oleanolic acid/olive oil & leaves (an interesting clinical trial is currently testing olive polyphenols on postmenopausal women with decreased bone mineral density)
  • Papain/papaya
  • Pristimerin
  • Sea cucumbers/TBL 12 (currently being tested¬†on¬†untreated asymptomatic myeloma folks in two clinical trials in NYC)
  • Sesamin
  • Ursolic acid
  • Xanthohumol (hop plant…beer!)
  • Zalypsis

Note: If you’re on doxorubicin, eat spinach: http://margaret.healthblogs.org/2011/06/05/if-youre-on-doxorubicin-eat-spinach/

DIET: I don’t have any particular advice in this department…except to say that there are¬†a number of¬†cancer-fighting foods that should be part of our diet (whenever they are in season), such as anything in the broccoli family, as well as onions, garlic, turmeric, ginger…Also, try to cut down on your sugar intake (cancer cells LOVE sugar). Since 2005,¬†I have cut down on my¬†sugar intake. And I also cut down on pasta during summer, when it‚Äôs too hot to eat it anyway‚ĶAh, and here is a note: Dr. Nicholas Gonzalez found that his myeloma patients did best on a high-protein, high-fat¬†diet. Now, I‚Äôm not an avid meat-eater (on the contrary!), so the high protein part is a bit of¬†a problem for me (see my Page for more updated details, though)‚Ķ

IMPORTANT POINT: take a daily dose of¬†hearty laughter…the kind of laughter that makes your belly shake and ache…Myeloma cells, you see, have no sense of humor and really hate it when we laugh… ūüôā So have a look at the Laughter section of my blog…lots of funny stuff, there‚Ķjokes and links to funny videos‚Ķ

OTHER IMPORTANT POINT: try to avoid stress…See my page on Myeloma and stress: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/

As I mentioned, this is a work in progress. The Page (on the right) won’t have all the introductory stuff, of course. Otherwise, it’d be too long. Okay, I have to go now. Have a great Sunday, everyone! ūüôā

Summer and Fall Supplement Plans

Now that I have had my June blood tests, I have begun my summer supplement experiment. A few months ago I ordered curcumin capsules without bioperine from a reliable company in Milan. So this summer I want to see if the no-bioperine capsules will work as well as the ones with bioperine that I have been taking since last fall. I won’t change anything else about my intake, which will still include quercetin and oil capsules, and an occasional folic acid pill. A quick note: my Italian curcumin capsules are much smaller than my U.S. ones. I checked their weight (following the example of my friend Don, please see his informative Myeloma Hope blog), and found it to be correct. Why make big capsules if smaller ones work just as well? Smaller capsules are much easier to swallow, so that would be another point in their favour, if they work.

In the fall, I plan to take on a more ambitious project. I have ordered Chinese skullcap capsules (see my Scutellaria Baicalensis page for more information). I will test those for a couple of months and see what happens. When I say test, by the way, I don’t mean that I will stop taking curcumin. Too many potential risks involved (increase in IgG count and so on). Curcumin is to me what a security blanket is to the Peanuts’ character Linus.Peekaboo?

Ending on a more personal note. I wish to thank those of you who suggested many wonderful names for our new kitten, who will be joining our merry household on July 10 (more or less). My Mom yesterday suggested Peaches, which I really liked. But last night my husband came up with what I consider to be the best name so far: Peekaboo. We will probably spell it the way it should be pronounced in Italian, that is Pikabu. Our mischievous furry baby loves to play peekaboo, so the name fits perfectly. Is there a cuter kitten in the world? I doubt it! I have no super recent photos, unfortunately; this one was taken about a week ago.