Like Tom Hanks in “The Terminal”

Remember that movie, “The Terminal”? In a nutshell, it’s about a man (Tom Hanks) who gets trapped in New York’s JFK International Airport after being denied entry to the U.S.

I don’t mean to imply that Stefano and I are trapped in an airport somewhere. Nope. On the contrary, we are safely back in Florence, at home with our beloved kitties. So, apart from a major, beastly case of jet lag (we are having so much difficulty sleepingzzzzzzzzzzzzzzzzzz…), we are absolutely fine…zzzzz.

Now that I’ve cleared that up, I can go ahead and tell you what happened just a few days ago… šŸ˜‰

Late Saturday evening, as we were checking in at Logan Airport in Boston, I realized I’d forgotten my Italian “permanent resident” visa at my parents’ house on Cape Cod…

Oh no!!! Now what?!!! Without that precious document, I doubted I’d be allowed to leave Germany (the first leg of our journey). But Stefano said, “it’s too late to freak out now. There’s nothing we can do about it. Let’s get on the plane and see what happens when we land in Germany.” “But,” I squeaked, “won’t I be deported or, worse, kept forever in the airport, just like Tom Hanks?” “No, of course not,” he said, in a reassuring tone, “and don’t worry, I’m with you…”

And so, after my first “TOTAL PANIC, FREAK OUT!!!” nano-moment, I calmed down and, for the first time ever!!!, was happy that we’d have a five-hour layover in Germany…That would give me plenty of time to explain what happened and deal with any ramifications…I stopped worrying (sort of) and managed to watch three movies on the plane…

We landed safely in Germany and proceeded to the airport security checkpoint.Ā With a winning, bright smile on my face, I chirped “Good morning!” and handed my U.S. passport to the customs official. He smiled back at me, then noticed my surname, which happens to be German (= my “maiden” surname, that is). He asked if I spoke any German. I answered, “Ah, I really wish I did…but no, I don’t.” Then, faster than you can say “Tom Hanks,” he stamped my passport and waved us on.

Ehhhh???? That’s IT???Ā All that worrying for…NOTHING???

It would certainly seem so…

Sigh of relief.

We celebrated my “no muss no fuss” re-entry into Europe with a yummy organic carrot and orange juice…No kidding, an organic juice place in the airport…how civilized! šŸ™‚

I now have a 3-month tourist visa. That gives my parents plenty of time to send me my permanent Italian visa, which they found safely tucked away in a drawer…you know, those blasted “safe” places where you put important stuff so you won’t lose it (!)…those places you forget to check when you’re busy with a million other pre-travel things/errands (!)…

Yeah, those places…uff!!!

Before my next trip, I’m going to have my visa tattooed on my forehead…

Back from Arizona

I cannot begin to tell you how wonderful our stay in Arizona was…overwhelming, wonderful, happy, beautiful, exciting, moving…extraordinary…

And I have fallen head over heels in love with saguaros = huge, tree-like cacti (or cactuses) that can be seen all around Phoenix, even in people’s yards…wow…I wish we could have one in our yard in Florence! šŸ˜‰

I have heaps of wonderful (I hope!) photos, but I don’t have time to download and go through them now, so that will have to wait until Stefano and I get back to Italy.

Let’s see. Just briefly, Stefano, Mom, Dad and I returned to Cape Cod last night. What an adventure THAT was…I don’t have time to tell you about it now…but, just to give you an idea, on December 17 we left for Phoenix in the middle of that major winter storm that hit the East Coast (flights were delayed and canceled…a mess!), and only narrowly escaped returning from Phoenix to Boston in the middle of ANOTHER blizzard! Sheesh.

But the main thing is that we’re safely home now. This morning I got up at dawn and went outside to take photos of my parents’ house covered in snow. I also got some photos of a big, fat robin perched in a tree. And Stefano and I are about to set out for the beaches to see what we can find. My biggest hope is that we will also come across a snowy owl…apparently there are many here this year, and I’ve never seen one in the flesh…Will we get lucky and see one today? Mmmmh…

Okay, really must go now. A (belated!) very Happy New Year to everyone!!! šŸ™‚

Happy holidays!!!

We’re in Arizona, at my sister’s place in Scottsdale. Wow. I can’t even begin to tell you how amazing this trip has been, how wonderful it is to be reunited with my sister and niece, and with a nephew I hadn’t seen in a very long time… But I’m typing this on my iPad, so I’ll have to make it short.

We’ve also been sightseeing. Yesterday Stefano and I went to the Botanical Gardens and were blown away. It was spectacular. We got photos of a sleeping screech owl (?) with its head resting outside its nest, which was a hole in a saguaro cactus. Stefano also got some amazing shots of a hummingbird drinking nectar. Paradise. So different from anything we’ve ever seen…anywhere!

The day after Xmas Stefano and I will be leaving on a 5-day tour of the area around Sedona. We’ll be back here in Scottsdale on New Year’s Eve.

well, typing this way is a bit of a drag, I must admit. So let me just wish everyone a very happy holiday and good times with your loved ones.

Buone Feste!!!Ā  šŸ™‚

Dogs that are scared of walking past cats…

We’ll be in Arizona tomorrow night…I haven’t seen my sister in years (and my niece since August)…it’s going to be a great Xmas family reunion…can’t wait!

I may not have much access to the computer while we’re there, but I’ll try to pop onto the blog now and again during the holidays. Oh, I probably won’t be answering any emails until after the New Year…sorry about that…but it’s a bit complicated from here…I’ll do my best, though…

This morning I watched this hilarious video (see post title)…Hope you enjoy it, too!Ā http://goo.gl/Gct2fyĀ Ā  šŸ˜€

Cousin G

Yesterday Stefano informed me that his cousin had died in a hospital in Rome during the night…one of our favorite cousins.

Cousin G was diagnosed with stage 4 colon cancer about a month ago. As soon as we heard, I went to PubMed and did some research, so I knew it was bad…

But…this soon? Why? WHY??? So bloody unfair. I mean, cousin G was only 48 years old…full of life, funny, always ready with a joke…his wife is one of the nicest, sweetest women on the planet…they have a vivacious, smart 7-year-old son…and they had just bought and moved into their first house…

Oh how I wanted him to beat those bloody statistics…

Still in shock…absolutely devastating news…

U.S.A. Xmas 2013…a bit of a bumpy start.

Boy, what a trip…On Saturday morning Stefano drove me to the Florence airport where I was supposed to board a flight to Munich (and, from there, a connecting flight to Boston). Well, that didn’t happen…

The Florence airport had basically shut down. All morning. Why? Because of FOG. Yes, fog. I didn’t know this, but if Florence is enveloped by fog, as it was on Saturday morning, all incoming and outgoing flights get canceled. The Lufthansa personnel told me to wait…and so Stefano and I waited…and waited and waited…

Something amusing did happen, though. Between 11 AM and 12:30 PM, as flight after flight got canceled, we’d hear similar announcements from all the airlines, more or less like this one: “Air France regrets to inform all passengers booked on flight blabla, bound for Paris, that the flight has been canceled due to adverse weather conditions. Passengers should report to the Air France desk, blablabla…”

And then, no kidding, about two nanoseconds after EACH announcement, the same loudspeaker voice informed “all passengers that the newly opened cafe’ on the second floor of the airport has a panoramic terrace.” A PANORAMIC terrace. šŸ™‚ I mean, one minute you’re telling me that my flight has been canceled due to fog…the next, that I can go up to the new panoramic terrace on the second floor of the airport to admire…THE FOG. I was mightily amused…

At 12:30 PM Stefano and I finally heard the announcement that my flight had also been canceled, duuuh…By then I knew that I wasn’t going to make that Munich-Boston flight…

While standing in line in front of the ticket desk, waiting to find out what Lufthansa was going to do with me, I began chatting with an Italian guy in front of me…the “where are you headed?” sort of talk. (This is relevant to what happened later in the day.)

In a nutshell, Lufthansa rebooked me on a flight to Frankfurt from Bologna (a city that is about an hour’s drive from Florence), which I reached by shuttle bus with all the other stranded passengers. Note: as we were waiting to board the bus, the fog suddenly lifted, and the sun came out to mock us. šŸ˜‰ Oh well.

After a long wait at the Bologna airport, I finally boarded the plane to Frankfurt that evening and immediately recognized the guy sitting next to me: the above-mentioned Italian with whom I’d exchanged a few words with at the Florence airport.Ā A welcome coincidence. We spent the entire flight time chatting up a storm. He was on his way to the American Geophysical Union’s congress in San Francisco, so during the flight I learned a lot about earthquakes and volcanos and lava and so on…fascinating, I must say. When we landed in Frankfurt, Lufthansa put us up in the same hotel, together with two other stranded passengers, so we had dinner together. It was nice not to be alone in this unexpected and unwelcome, er, adventure…

I finally got to my parents’ home on Sunday afternoon. Almost 24 hours late. Tired but mainly verrrrrrry happy to see them…And I immediately filled myself up with curcumin and have also been taking my Manuka-curcumin concoction to ward off all the nasties to which I had been exposed this weekend, especially on the Frankfurt-Boston flight…ugh!

So far, so good. I feel fine, and the jet lag hasn’t been bad at all. šŸ™‚

Thankful…

I know, I know. Thanksgiving 2013 is over, so I should have written this post last week. But, to be honest, I don’t celebrate Thanksgiving over here in Italy, so I can be thankful any day, right?

It happened on Saturday, as I was baking my first batches of Christmas cookies (I spent the entire weekend baking like a madwoman,Ā while listening, dancing and singing to all sorts of music…until I ran out of butter, that is…bah…I mean, how can a baker RUN OUT OF BUTTER????).

Sure, I’ve always known this to be true, but it really hit me on Saturday. Simply put,Ā I realized how lucky I am to have someone like Stefano in my life…My tall, dark, handsome, totally devoted ( to me, of course!!!), brilliantly intelligent and wickedly funny Italian sweetie…

Now, what I’m about to write is going to sound even cornier, but here goes anyway: I really doubt that two people could love each other more than we do. What binds us isn’t “just” love, actually: we have a lot of fun together, we share many of the same interests (bird watching, traveling, cats, etc.)…list goes on…and on…and we’re best friends…AND he scratches my back in bed (= one of the reasons I married him, in fact, hehe)…Ti amo tantissimo, Stefano.

OKAY! Quick change of topic, before this post gets too gooey and starts melting the blog!!! šŸ˜‰

I have an update on my test results. Yesterday I spoke with my doctor who told me that my myeloma has indeed “moved” a little bit, as I already suspected. He added, however, that it’s probably because I fell off the curcumin wagon (by taking a lower dose, that is…stooooopid me!), and that my test results in late January or early February will be better. For the record: I think so, too. Ah, in case you’re wondering (I wondered, too), this doesn’t mean I’m not smoldering anymore. We’ll just have to see how my next results are (and the ones after that).

He did note the fact that many of my important markers, such as B2M and CRP, haven’t budged at all (or have, indeed, improved a bit). A very good sign, he said. So he feels sure that I can knock the myeloma back to where it was…a gentle knock, mind you (my doctor and I don’t believe in throwing kitchen sinks, as the saying goes, but rather in giving gentle pushes in the right direction…). All in all, therefore, it was a very positive discussion…

I’ve added 1.5 grams of quercetin to my daily dose of 8 grams of C3 Complex curcumin, and I’m probably going to add some ashwagandha (see my “article” on the right, titled “ashwaganda/withanolides”), which did me so well on two separate occasions in the past. And, since my parathyroid is a bit up, too, I’m also taking vitamin D…

Gentle pushes…

Oh, my doctor gave me a welcome bit of news: my albumin levels are about the same as they were last time. I was looking at the wrong result, duh. That is a huge relief…So I am going to correct my recent test result post in that sense…

Another, unrelated!, bit of news: I’m leaving for the United States on Saturday. This Saturday, Dec 7th. I’m going to be staying with my parents for about ten days, then the three of us are driving to Logan Airport in Boston where we’re going to meet up with Stefano (flying in the same day from Italy). The four of us are then getting on a plane to Arizona. We’re spending our Xmas holiday in Phoenix (where Stefano and I have NEVER been!) with my sister and niece, my niece’s family, plus a nephew and his daughter. This reunion was planned months ago…We haven’t all been together for YEARS now, so, well, I can’t wait!!! Verrrrrry exciting!

No promises, but I’ll try to read, and post about, a couple of studies before leaving… šŸ™‚

November test results

Well, let’s see. There’s good news, and there’s bad news. Compared to my last set of tests, done months ago, my red cells, hemoglobin and hematocrit have slipped slightly below the normal range. Just a shade, so I’m not overly concerned. I can bring those numbers up with diet…

Let’s continue with the bad news.

  1. My m-spike: it’s gone over 3 for the first time since 2011. Bummer, that. But I’ve seen it go up, then down, so again, I’m not overly worried. In my last set of tests, e.g., my m-spike was lower compared to previous tests. I therefore expect it to go down with my next set.
  2. Total protein is also up: 10.7. It’s been as high as 9.9, but this is the highest it’s ever been. This number HAS TO COME DOWN. Period.
  3. Gamma globulins are up a bit, too. Okay, Mr. Gamma, I’m on to you…you’d better watch out!!!
  4. So is my parathyroid…up, just a wee bit. This means that I need to get back on my daily vitamin D (I stopped a week before the tests, following my family doctor’s advice, which was to stop taking it a week before getting tested).

Ah, but there’s a bunch of GOOD stuff, too! And here’s a bit of advice that has helped me tremendously in the past 8 years plus: when you go over your test results, try NOT to focus on one or even two bad numbers. Look at the WHOLE picture. Things might not be as bad as you think…Okay, here goes:

  1. Beta-2 microglobulin: no change. šŸ™‚
  2. C-reactive protein: it’s LOWER than it was last time (it’s gone down a whopping .20, which doesn’t sound like much, but consider that the normal range is as follows: “less than .50“!!! Is that a 40% drop? Something like that…I’m not a wiz with numbers…
  3. IgA: slightly up, from 6 to 7 (yes, I know, it’s just a smidgen, but even the slightest change in the right direction is more than welcome!!!). No change in IgM, but, as long as it’s staying put, I’m happy.
  4. Ferritin (= iron stores) is up from 31 to 39. My serum iron is slightly lower than it was months ago, but still way within the normal range.
  5. Creatinine (serum) and creatinine clearance (both serum AND urine) are both fine. In fact, all of my creatinines (they ran a bunch of creatinine-connected tests this time) are fine. šŸ™‚
  6. Freelite chains. They’re still high (but then, they’ve always been high, so I wasn’t expecting a miracle), but they have improved A LOT compared to last time. Big move in the right direction.
  7. No Bence Jones. As usual.
  8. UPDATED on November 30: serum calcium is also way within the normal range.

Now, I wanted to discuss the next test separately from the others. You see, I had a new test done, a test I found out about in the Australian MGUS curcumin trial, in fact. This test checks one of the breakdown products of bone called “deoxypyridinoline” (hey, try pronouncing THAT fast, three times in a row, I dare you! ;-)).Ā This deoxythingy is a specific marker of osteoclast activity and bone resorption. In simpler terms, it helps determine if you have bone disease or not. Well, my deoxythingy result is fully within the normal range,. Oh, and so is my deoxypyridinoline/creatinine ratio. Purrfect.

I think that’s about it. In conclusion, I’m not ecstatic (I would certainly have been much happier if all of my MM markers had simply…disappeared!!!!!), but I’m not devastated, either.Ā In this last period, you see, I’d gone down to 6-6.5 grams/day, and, I admit this publicly!!!, there were days when I didn’t take it at all, for one reason or another. I now realize that THAT was a HUGE mistake. These test results confirm that I need to be on a regular AND higher dose of curcumin. I’m not taking my albumin, total protein, Hgb levels and m-spike numbers lightly, believe me…

So, no more 6 grams for me. I’ve already gone back up to my usual 8 grams. And I’ve added 1.5 grams of quercetin (which I’d stopped taking, because I ran out of it), too.Ā And, well, we’ll just to have to wait and see how I do next time! No worries.

To have it or not to have it?

The question pops up every single year: “are you having the flu shot?” “No.” “Noooo? Are you nuts? Why not?”

My answer is simple: I was always sicker with the vaccine than without it, and the same happened to Stefano (I don’t mean to imply that that happens to everyone, of course…but that’s been OUR experience). And so weĀ haven’t had the flu vaccine in years, now (I think this might be our fourth year). But I’ve written about this in previous posts, so I won’t go on and on about it here…again!

Point is, if you’re in the midst of deciding whether or not to have the flu shot, please check out this article published just a few days ago in the British Medical Journal (I’ll see if I can get my hands on the full study)…

It provides us with some food for thought, or rather, some flu for thought (hehe):Ā http://goo.gl/UtyKOPĀ (note: at the end of this BMJ article, there is a direct link to the Dr. Doshi’s abstract).

Many thanks to Lori for posting the link on Facebook (Yes, I get some of my news from FB…indeed a SCARY thought! But I check out everything, as you can imagine, so I guess it’s okay šŸ˜‰ ).

Smoldering myeloma requiring treatment: time for a new definition? Introductory notes.

I know I havenā€™t been posting anything related to myeloma lately…and that has been bothering me a lot. And soĀ Iā€™ve been trying really hard to concentrate.

I began writing this post about ten days ago, but I just haven’t been able to finish it.

So today I decided to write a different sort of post: a post about why I canā€™t write a post.

It reminds me of the time when I signed up for an American Sign Language course. I was fresh out of college, so that’s QUITE a few years ago…Anyway,Ā I loved my ASL course and was an eager student.Ā Our first assignment was to go shopping in a supermarket and ā€œpretendā€ to be deaf. The idea was that it would be helpful if we understood how it feels be to be deaf in a “hearing” world…

Even though the assignment was interesting, and it made sense, I didnā€™t know what to do, to be honest. I only knew a few signs at that stage and couldnā€™t help thinking: what if I run into a deaf person? How can I explain that this is an ASL assignment?

In the end, I just couldnā€™t do it. And so I wrote a paper about how I felt at not having been able to carry out the teacherā€™s assignment. (For the record, I got an A+.)

So here goes. Another “non-paper.” A non-post on a post that I haven’t been able to complete (yet).

A recent Mayo Clinic study published in ā€œBloodā€ deals with one of the hottest new issues in the smoldering myeloma field, namely: are some of us smolderers really at the early myeloma stage? Should some of us be considered for (conventional) treatment?

The abstract is available for free here:Ā http://goo.gl/QY244V

As you can see, the abstract mentions the Spanish PETHEMA smoldering myeloma-chemotherapy study. Well, Iā€™d like to direct your attention to the language used to describe the PETHEMA study: ā€œA report from the PETHEMA-GEM group described both fewer myeloma related events and better overall survival among patients with high-risk SMM patients who were treated with lenalidomide and dexamethasone.ā€

OVERALL SURVIVAL. What is it? In clinical trials, it’s used to see how well a treatment works…Crudely put: how many patients survive, how many don’t…

But what about the patients’ QUALITY OF LIFE? There are only three mentions of “quality of life” in the Mayo study: the first is where the authors discuss the side effects registered during the PETHEMA trial. Not surprisingly, there were many more side effects in the treatment group than in the control one. The upshot is thatĀ 30% of the patients in the treatment group withdrew from the study due to toxicity or choice,Ā compared to only 4.8% in the control group. 17 patients compared to just 3. The Mayo authors immediately add: “A potential impact in quality of lifeĀ needs to be excluded.” And that is their first mention of quality of life. Uhm.

Now, I read the full PETHEMA study. And I can assure you that the PETHEMA authors state clearly that they didn’t look at the quality of life of their study participants, as though quality of life were irrelevant…

Irrelevant?

Have we reached the point where “overall survival” is more important than “quality of life”?

Well, today I’m going to leave it at that. Itā€™s just too frustrating to read this stuff… Too upsetting. Words words words…blablabla.

I have another reason for setting aside this study for the time being: Iā€™m going to have blood tests done on Tuesday, I don’t want to be upset by anything in the meantime. I want to be happy and calm… šŸ™‚

But here’s my final consideration: a study that doesnā€™t address the quality of life of patients has no credibility whatsoever, in my opinion. And it shouldnā€™t be allowed. It shouldn’t be bloody allowed.

What do YOU think?Ā