Stefano and I got married on May 8, 1999, which means that today is our 14th wedding anniversary. 🙂

We lived together for a couple of years before getting married, but it soon became difficult for me to remain in Italy…legally, I mean. I needed to find a more permanent sort of job, and I certainly couldn’t do that on a tourist visa. So we decided to tie the knot. Now I have a permanent resident visa, which gives me almost all the rights that an Italian citizen has (free healthcare, the right to work anywhere, etc.)…except the right to vote, which I don’t really want, anyway, truth be told! 😉

That same year, 1999, I discovered I had MGUS. I found out by chance, as is often the case. What happened is that we’d decided to try to get pregnant, so my family doctor, who is very scrupulous, had me take a whole series of pre-pregnancy tests, which included a serum protein electrophoresis test. When my doctor looked at my results (at the time, I didn’t know beans about anything, including beans!) and mentioned the word “mieloma,” I thought he had said “melanoma.” I’d never heard of “multiple myeloma” before. I’m sure that’s what happened to most of us when we were first diagnosed…

14 years have passed since then…In the end, Stefano and I decided not to have kids (we thought that I wouldn’t live very long, that it would be too risky for me, possibly for the child as well, blablabla…)…and, well, we now have six adorable cats that we love more than anything else…The one in the photo is our youngest, Prezzemolo, who has a chronic viral (=stuffy nose, mainly) condition, poor sweet, but is otherwise a very active, healthy kitty. When you call him, he comes running, like a little dog…tail straight up in the air and an eager look on his handsome face. He’s always ready to play or be petted. Sooooo cute!!!

This evening we’re going to celebrate our anniversary with a couple of good friends who are visiting from Cape Cod, one of whom has never been to Italy. For that reason, I chose a restaurant that not only has yummy Tuscan food, but is also located on the side of a hill with amazing views of my beautiful city, right from our table…It should be fabulous!!!

Happy Anniversary/Buon Anniversario, amore mio!!! 

Here are some of my photos. 

If you hover (the mouse pointer) over the image, you will be able to read some info about it…where it was taken, etc. 

Enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Update (=May 6 2013): I was in such a hurry the other day that I forgot to include the link to the Myeloma Beacon article, duh! Here it is: http://goo.gl/zTFiF

Sorry for the rather rude title of this post (and I’m not rude at all in real life…quite the opposite, in fact!), but I was simply infuriated by a Myeloma Beacon article I read this morning. It’s about the Spanish PETHEMA smoldering myeloma study…the one that I have always ranted and raved about, the one that could turn me into a screaming Tasmanian devil. 😉 Well, I feel like ranting and raving about it again today, too, but I’ve already written so many enraged posts about this study, so there really is no point in wasting my time (and yours). 

However, I would like to point out that I left a comment (written a bit hastily…and in fact I used the past simple instead of the present perfect in one spot, argh!) on this article, as follows: 

Hi there,
The Spanish PETHEMA study has concerned me from the very beginning. I wrote about it on my blog (several posts throughout the years (just do a search for “Spanish SMM study”), so I won’t repeat too many of the points I have already made, except to say that, based on the PETHEMA classification, I would be considered high-risk SMM and would be eligible to enroll in that trial. But I wouldn’t even consider doing so, for the following reasons…
1. I have been leading an active, normal-person life since my diagnosis with SMM (fall of 2005; MGUS diagnosis in 1999, btw), especially after I began taking curcumin (= Jan 2006). So I have been stable and smoldering for more than 7 years now, in spite of a high IgG, in spite of a high BM paraprotein level, etc. etc. etc. Just to give you an example, my husband and I just got back from Edinburgh, where we were climbing to the top of ruined castles and walking from morning till night. In other words, I have a very high quality of life.
2. The PETHEMA study never talks about its SMM patients’ quality of life. How are they doing? We simply don’t know. Overall survival doesn’t give us any of the important details. I don’t know about you, but QOL is very important to me!
3. The Mayo Clinic and PETHEMA cannot even agree on the definition of “high risk SMM.” The Beacon published an article to that effect in Jan 2013. Uhm.
4. Many of the researchers involved in the PETHEMA study have very close ties to the pharmaceutical companies that produce the very drugs used on these SMM patients. One is even a Celgene employee (hello???). That’s like having a safety study on a new Honda model…but the only people involved in the study happen to be Honda employees or people who have received money from Honda. Could we trust the results from such a study?
For these and many other reasons, I think that SMM folks with no CRAB symptoms are better off taking curcumin and/or other non-toxic, anti-MM, scientifically-backed supplements…and also being careful with their diets (no sodas, no aspartame, etc.) and stress levels.
I know it’s hard, believe me!, and I know we all want to be proactive. But, in MY opinion, studies such as these can be very dangerous. As I said, it’s just my own opinion…But it’s also MY life.

Okay, that was my comment. By the way, I’m not in any way judging those who are participating in the PETHEMA study. Believe me, I really do understand that MGUS and SMM patients WANT to be proactive. So did I! We don’t want just to sit back and wait. So if our doctors suggest that we participate in a study such as the PETHEMA one, I’m not surprised that many folks would go for it. Well, I hope, I really really hope!, that all of these patients are doing well and are active and happy, with a high QOL. I fear that is not the case, however, since I read the full PETHEMA study a few years ago, and many of the patients did experience side effects, bad ones in some cases (as I recall, a few even had to leave the study…but I write that without double-checking…).

Another thing that REALLY concerns me: the long-term effects of early treatment…in the absence of CRAB symptoms…

I mean, by now we know that MM cells become resistant to conventional treatments at a certain point (see my recent rant-and-rave posts on the Vermorken study, e.g.). Therefore, beginning treatment before any CRAB symptoms arise just makes no sense. 

No, it just makes no sense…

Just my own opinion, of course!

Hi there! 🙂

We got back from Edinburgh last night…oh, what a glorious time we had…and what a splendid city! We both fell in love with it and would love to move there immediately…But we have six cats that don’t travel well at all…oh, and our jobs, of course! 😉 Oh well…we’ll go back some day…for sure! 

The weather was a big topic of conversation. Everywhere you went. And yes, at times the weather was a wee bit on the wacky side…it would rain or even pour, then the wind would blow the rain clouds away, sometimes within minutes, and the sun would come out…Then it started all over again–rain, sometimes even hail, then sun…and always accompanied by lots and lots and LOTS of wind. But we didn’t care. We’d come well-prepared for cold, rainy weather. And of course both Stefano and I are cold weather people, so we were fine. 

Thanks mainly to my blog reader’s daughter, we also ate really well and at very reasonable prices… Stefano tried haggis (three times!) and black pudding, which he liked a lot (what can I say? He’s a nutcase 😉 And no, I’m NOT going to explain what those two food items are, bleah…), but I stuck to free-range chicken, savory tarts and veggies…and tea and scones, of course…

As for my blog reader, well, what can I say? She was absolutely fabulous. She picked us up on two different days and drove us to Bass Rock (North Berwick) and also two castles, of which our favorite was Tantallon (see photo on left), which had amazing views of Bass Rock, where the gannets nest.

Then, the day before we left, she drove us to Craigmillar Castle, Rosslyn Chapel and the Scottish border town of Peebles, which is absolutely adorable. We sat on the riverbanks and took photos of all the birds passing by. Glorious. On the way back, she also stopped frequently to let us take photos of the lambs and sheep, a passion of ours (you don’t get to see many lambs in Tuscany…and they’re so adorable! See photo below…doesn’t it remind you of Ring around the rosie?). 

If you asked me to describe Edinburgh in just a few words, I would give you this list:

• Edinburgh Castle, which dominates the city (see photo)
• whisky & wool/cashmere shops everywhere
• crazy weather…lots of wind
• lovely benches (ah, how I loved them!)
• bagpipers on every corner
• quirky shops
• men in kilts and women in mini-kilts, of all shapes and sizes
• very friendly people
• lovely flowers

Anyway, we’re back home now…reunited with our kitties (who love their cat sitter but love us more, I think!)…Stefano went back to work today, and I’m going back tomorrow. We still have to go through our photos. I’ll be posting more of ’em in the next few days or so…

Today I’ve mostly been going through my 900 plus unread emails (!!!), so if you don’t hear from me, please take pity! And write to me again, if you need an answer to a question.

One of my messages, sent by a friend (= also a blog reader…That’s how we met, in fact!) contained the link to an interview with Dr. James Berenson…part of the Andrew Schorr/Patient Power series: http://goo.gl/y69wz

Well, at one point Dr. Berenson made a rather offhand remark that I found very interesting…and very scary, at the same time. When asked about the hereditary, genetic predisposition for MGUS, he remarked that he has had cases of husbands and wives with MGUS. Husbands and wives?????? He added that that led to the questions: is it infectious, is it environmental? But he didn’t answer those questions. He couldn’t, of course. 

Infectioussssssss? I really don’t like the sound of that possibility. And I’m sure Stefano won’t, either. Well, it’s something I want to take a closer look at, for sure. Soon! Another interesting link, posted by a friend on Facebook: http://goo.gl/XOIZa It’s a link to a New York Times blogging article, titled “Is organic better? Ask a fruit fly,” and I think all of you will find it VERY interesting…The article mentions curcumin, too, oddly enough.

Do let me know what you think of the article and the interview…

And most of all, take care, everyone! Ciao for now!

Well, after spending the morning running errands (buying cat food etc.), I’m finally getting our stuff together. It’s going to be A LOT COLDERBRRRRR in Edinburgh, which I am sure will do wonders for my cough, ehm!, but I’m prepared. Plus, I’ve put together an entire truckload of medicines and supplements, so we’re covered for every type of ailment you could possibly imagine, except perhaps exploding head syndrome… 😉

I’ve also firmed up plans to get together with my blog reader. We’re meeting for the first time, after corresponding for years, and I’m sure it will be heaps of fun. Number one: she is a cat person, too. Number two: she is taking us to Bass Rock, where she’s been many times, to see…PUFFINS! I mean, hello?, how could we possibly NOT love each other instantly? 🙂

Okay, I have to go back to packing and doing some touristy research online, but FIRST…

1. Here’s an adorable video showing a female cat and her loving, attentive, rather sharp-clawed, er, suitor = a sloth, yes, that’s right, a sloth! Amazing creatures, sloths…have always fascinated me… http://goo.gl/tQkYN Awwww, I want to cuddle with a sloth now…and get a nice back scratch, too…I mean, check out the length of those CLAWS!!!!!!!! Yikes. 

2. And here is a HILARIOUS (this morning I laughed OUT LOUD. Thanks, Delilah!!!) list of Shakespearean insults with a…twist. Too funny…Ah, here’s the link: http://goo.gl/ACx4w  (These are all for you, Dad = the great Shakespeare maniac in the family!!!)

Well, that’s it for now. We’ll be back in Florence on May 1st. That doesn’t mean I will be absent from the blog all this time, mind you…I just found out that we will have Wi-Fi service at our bed & breakfast in Edinburgh, so I might even write a quick post between now and then…

In the meantime, take care, everyone! And remember to laughlaughlaugh! And…tickle that catastrophe!!! (See the second link to understand that one, by the way…hehe)

Ciao! 🙂

Day after tomorrow Stefano and I are leaving for Edinburgh, a holiday we’d planned a long time ago. We’ll be gone for about a week (a good friend is moving into our house and taking care of the cats, as always).

Given what we’ve been through in the past few weeks, it will be really good to get away, I must say. Since we both need a rest and a break, I’ll probably not be online during our holiday, except to plan our daily itinerary and make sure we’ve seen all the sights and been to all the best tea rooms…

Oh, before I forget…I’m definitely over the brief flu-like episode I had (last Friday), and I’ve finally begun laughing again, which always helps. This morning, taking breaks from work, I watched this amusing video, e.g.:

http://goo.gl/vsjuc

And here I thought my cats were the nuttiest in the world…But THIS cat beats them all! 🙂

P.S. Many many thanks for your kind messages and comments. Much appreciated! 

Just a little while ago I was writing (boasting!) that I haven’t been really ill in ages and haven’t had an antibiotic in ages…

But first things first.

On Tuesday night, after a long period of illness and suffering (especially in the past few weeks), my father-in-law died in a Florentine hospital. An awful, awful period for all of us. 

On Wednesday afternoon we were at his wake, and that’s when I began feeling a bit “odd.” But it wasn’t until Thursday morning that I began coughing. Ah yes, THE cough. The familiar cough. I had to nip it in the bud. I called my family doctor who agreed that I should immediately start taking an antibiotic.

I actually didn’t feel too bad on Friday morning. And in fact I went to my father-in-law’s funeral in the afternoon.

After the funeral, Stefano and his brother left for Southern Italy, where my father-in-law is now buried. I was supposed to go with them, but the doctor had advised me to stay at home, just to be on the safe side. Luckily, I followed his advice…

That night I tossed and turned and had a very hard time sleeping…and on Friday morning I woke up with a fever of almost 101° (38.3° Celsius)…and nausea and weakness. I spent the day in bed, surrounded by my cats…

Well, today I’m fine, I really am. I still have a bit of a sniffle and one of those sporadic, annoying, itch-in-the-throat coughs, but the fever and nausea (thank goodness!) are completely gone…So it was just a 24-hour bug. 

Now, not that we need any more proof that stress is extremely bad for us immunocompromised folks, but that is why I’m telling you this story today. Of course, sometimes we can’t avoid stress…as in this case, obviously…

Well, I just finished watching a movie and now I’m going to make myself a cup of organic dandelion root tea with Manuka honey. But I thought I’d post this quick note on the blog, in case some of you were wondering why I’d disappeared…

Epstein Barr, or infectious mononucleosis. Here we go again.

It’s been ages since I last wrote about a possible viral connection to the insurgence of MGUS…At one point, a few years ago, I even had the brilliant (?) idea of asking you all to let me know if you had had a similar experience to mine. What happened to me is that I began having what I now know were possible symptoms of MGUS (mainly, fatigue fatigue fatigue) while I was in grad school, right after I had recovered from a bad case of Epstein-Barr (= EBV, from now on)…This would have been April of 1995 (I’ve written about this before on the blog…just do a search for “Epstein Barr”).

After my appeal on the blog, I received a number of messages and comments, but I just couldn’t detect a trend or anything that might be useful. Not at that time, anyway. So I just put all that data away and, well, eventually, forgot about it. After all, I reasoned, even if I discovered that my MGUS, now SMM, is connected to my bout with Epstein Barr, how would that help me/us now? I mean, it’s a bit too late for prevention, right?

However, in the past few days I’ve renewed my interest in EBV. What happened is that I came across a Mexican case report about an 11-year-old girl diagnosed with myeloma (!) associated with, yes, EBV: http://goo.gl/othmW

I was able to read the full report, so I’ll be able to give you a bit more information. What we know from the abstract is that the above-mentioned girl was 9 years old (!!!!!!) when a plasmacytoma was found at the base of her skull. She tested positive for EBV but had no cancer cells in her bone marrow at that time. She was given steroids/local radiotherapy, and her symptoms disappeared. For a while.

Two years later she went back to the doctors because of generalized bone pain. Unfortunately, bone lesions were found in several areas of her body, including the skull, ribs, humerus and spine (and various other bones, too). By this time she had 95% plasma cells in her bone marrow. Incidentally, the full study mentions that gadolinium was used as a contrast agent in her imaging tests…Uhm.

Anyway, this was her diagnosis: plasma cell myeloma with kappa chain restriction/IgA+ at a Durie/Salmon clinical stage of IIIA.

One good thing: she didn’t have any kidney damage. She began treatment with dex, thalidomide and zoledronic acid….and, in February 2012 (at the time the study was written), she was awaiting a stem cell transplant.

An important bit of information: EBV was found in the nuclei of 70% of the little girl’s myeloma cells (= two different BMB specimens). 70%!

According to the authors, EBV can cause a polyclonal B-cell expansion, which can eventually develop into a monoclonal malignancy. Eh??? What the haystacks does that mean? Okay, step by step:

1. B-cells or B lymphocytes, as we know, are the cells that become malignant in myeloma. They get damaged and start proliferating like mad, totally out of control.  
2. I thought precursor cells were stem cells, but I checked, just in case. No, they aren’t. While precursor cells are similar to stem cells, they’re more specific. The simple difference between stem and precursor cells is that the former can “reproduce” themselves forever and ever, but the latter can’t.

Simply put: the EBV virus appears to be able to infect (and hide inside the nucleus of) these B-cell precursor cells, which activates a whole series of unfortunate events that eventually lead to the development of myeloma.

Now, the authors note that the association between multiple myeloma and EBV seems to be a rare occurrence. Yes, that may well be true…but then, how many people newly diagnosed with MM or MGUS or SMM get routinely tested for EBV? Were you tested for EBV at the time of your diagnosis? Probably not. I certainly wasn’t.

Here’s some more food for thought:

1. EBV frequently doesn’t cause any symptoms. That is, most people are EBV carriers but don’t know it.
2. Something like 95% of the world adult population has been infected with the EBV virus. Yes, that’s right. 95%.
3. However, 95 % of the world’s population does not have myeloma or MGUS or SMM….otherwise it wouldn’t be considered a rare type of cancer, right?

That said, why couldn’t some of us have gotten this icky thing after a bout with EBV…I mean, why couldn’t EBV possibly be at least one of the causes? After all, I read somewhere that it only takes one wacky cell…and bam!, eventually we have myeloma (or MGUS or SMM).

It all begins with just one wacky, abnormal cell.

So here are my final questions of the day:

1. what if the EBV test were part of the routine tests we have to have when we are first diagnosed with MGUS, SMM or MM?
2. What if an association could be established, at least for some of us?

If (again, for some of us) an association were found, then perhaps our myeloma researchers could devote a bit of their time to studying this issue. See: http://margaret.healthblogs.org/2010/10/28/pieces-of-the-viral-puzzle/

Well, I’m intrigued (again!)…and I want to do some more digging. I’ve found a few, recently published studies on this topic. Furthermore, as I mentioned earlier, when I have a bit of time (SIGH!) I’ll go back and look at the data you have already sent to me. This time, I might be able to put the puzzle together, in spite of the missing pieces…

And that is precisely why I’d very much welcome your thoughts and experiences and help…again!!! Thank you!!!

On October 25 2011, I wrote about an unusual encounter  I’d had at the supermarket here in Florence. In fact, before reading any further, please click on this link (if you don’t read my 2011 post, you see, this one won’t be as amusing…Don’t worry, it’s a quick read!): http://margaret.healthblogs.org/2011/10/25/encounters/

So here’s the thing. JK and I have been trying to get together for, gulp!!!, a year and a half now (how did THAT happen???). It’s just that, for one reason or another—she’s busy, I’m busy, that sort of thing—we have somehow never managed to find a mutually convenient time…And time passes…ah yes indeedie…

We do keep in touch, though, mainly via Facebook…She’s an absolutely lovely person (and, ehm, I’m not writing that because she’ll be reading this post! 🙂 ).

Anyway, getting to the point…Today I made a quick, unintended trip to the supermarket. All I really needed was some milk for my cappuccino tomorrow morning (an absolute “must” before going to work!), but, you know how it goes, while I was there I picked up about a dozen other items, including cat litter.

Then, after putting the second bag of litter into my shopping cart, I looked up, and there she was…JK, marching towards me, holding a few items in her arms. Just like when we first met.

We laughed and hugged, and she joked, “you know, we should really stop meeting like this!” Hehe.

She said she’d caught a glimpse of me earlier in the store but then had lost me…But of course she figured she’d find me in the cat litter aisle. Good thinking, Sherlock! 🙂

We stood there gabbing for quite some time…blablabla about this and that, an unexpected mutual acquaintance, colleges (yes, it turns out that we have a college in common, small world!), curcumin and more blablabla.

At a certain point, a supermarket employee asked us to move slightly so that he could scan some items behind us. We obliged, of course. More blablabla. Then we said goodbye, and JK left.

I looked down at my barcode scanner and realized it hadn’t given me a 30% discount on my cat litter, so I turned to the employee and asked if he could help me. To my surprise, he looked absolutely stunned. He just kept looking at me, without saying anything. To cover this rather awkward moment, I launched into my “I have six cats and need the discount on this litter” story. As soon as I stopped talking, the first thing he said to me was:

“Ma signora, il Suo italiano…è perfetto!!!” (= But signora, your Italian…is perfect!!!)

I looked up at him, perplexed, “Mi scusi?” (= Excuse me?)

“Signora, il Suo italiano…è perfetto!!!” he repeated. (= Signora, your Italian…is perfect!!!)

For just a blink of a nanosecond, I’d been so totally focused on the litter issue that I’d forgotten that, until a few seconds before, he’d heard me speaking English with my friend. Lickety split English, to boot. So, you see, he wasn’t expecting my Italian to be so…er…perfect. 😉

Another blink of a nanosecond. Then I smiled and replied, “That’s because I’m bilingual. I’m a U.S. citizen, but I grew up here in Florence.”

Then I got my discount. 

I just finished reading a fascinating article published in “The Scientist” a few days ago. It discusses cognitive problems in chemotherapy-treated cancer patients…what we call “chemo brain.” The section discussing children who receive chemo was of particular interest to me, since I had no idea that “chemo brain” affects many of them as they get older. Sad.  

Here’s the link to “After Chemo”: http://goo.gl/uS9Fk

Unlike the author of the article, = a professor of pharmaceutical sciences at Temple University, though, I’m not optimistic. Not now, anyway. Not as long as there is no attempt to protect our healthy cells from damage and/or death during the administration of chemotherapy and radiation treatments. No…as long as we wear big pharma blinders, nothing is going to change…And cancer patients will continue to suffer from side effects, both cognitive and physical…

The Vermorken study (see yesterday’s post, one of my strongest to date, I think…) was really enlightening in this sense. I mean, here we have some researchers telling us, in paragraph 5.5, that anti-angiogenic drugs eventually make myeloma cells more “invasive,” that is, more aggressive. So yes, sure, these drugs may delay the time to progression, but ultimately the effects are going to be devastating for the patient…I don’t know what you thought of that scenario, but I didn’t care for it one bit. 

The obvious implication is that these drugs should NOT be used to treat myeloma or any other type of cancer…

But here’s the problem: there’s very little that can replace them. Most myeloma drugs are anti-angiogenic, you see. And so it’s a vicious cycle. But please don’t tell me, Dr. Vermorken, that curcumin might possibly be as dangerous as these toxic substances that require special handling, special chemotherapy gloves and gowns, even safety goggles, special chemo disposal bins, special chemo spill kits and so on and so forth. There is no comparison. 

The “After Chemo” article, the Vermorken study and other things I’ve read throughout the years have done nothing but cement my firm conviction that there needs to be a better alternative–something that is lethal to cancer cells but also less toxic to healthy cells. 

It doesn’t exist? 

Fine. Well, it’s time to find it. And it’s also time to lessen the obvious and, frankly, disquieting hold that big pharma has over our myeloma organizations and specialists. And over some MM patients, too, I hate to say…We need to shake the status quo, which clearly isn’t working. Not in the long-term and not for most, anyway…

Well, while we’re waiting for things to change (probably won’t happen overnight, though, so don’t hold yer breath! 😉 ), let’s take steps to protect our healthy cells. That much we can do. 

As you know, I support integrative treatments, which combine both the conventional and the alternative worlds. If I were to progress to myeloma at some point and decide to start some sort of conventional treatment, I wouldn’t stop taking my supplements, especially curcumin. Oh no. If anything, I’d increase my intake. 

Obviously, I hope I’ll never be faced with that decision…