This morning Stefano and I got up early-ish and went to the Parco della Piana to see if we could find any birds, namely that little grebe family we’d photographed a couple of weeks ago (we did, and we photographed it again…the chicks are almost as big as their parents now…).  

Anyway, as I was waiting for Stefano to get his photographic gear together, I began thinking about someone I met recently. We became friends on Facebook, too, and that is how this person found out that I have myeloma. Our friendship was over before it even started.

And that got me to thinking about the issue of telling people. About myeloma, I mean.

It’s true that most of my students don’t know what I have. My boss knows, as do a couple of other people at work. But most don’t. “Would you tell them?,” I hear you asking. Of course I would. IF they asked me. Otherwise, why do it?

After all, cancer isn’t contagious. 

My do-not-tell-unless-asked policy is probably rooted in an instinct of self-preservation. I don’t want people walking up to me all the time and asking me HOW I am. That would really make me squirm. I remember a distant relative asking me something along these lines: “How ARE you? I mean, you look really great, considering WHAT you have.” Uhm. Okay.

But what happens when you meet someone new? What if you like this person so much that you think “hmmm, it might be nice to become friends…”? Do you tell her (or him) about the SMM or whatever other health condition you might have?

It’s an interesting dilemma. Especially for a blogger. I mean, the blog is such a big part of my life, even when I don’t blog because I’m busy or having fun, that it would be difficult NOT to talk about it with a new friend.

And, of course, if the new friend asks to become “friends” on Facebook, the first thing she or he will see is my link to the blog. Eh. 

Well, this is what I concluded this morning:

I have some really great friends. Old and new.

I’ve known my best friend since we were adolescents here in Florence, Italy. And I’ve also made some (great!) new friends through the blog. All of them know that I have SMM, or smoldering myeloma. And it doesn’t make any difference. As far as my old friends are concerned, I’m the person they’ve always known—the playful, fun-to-be-with (at least, I think so! 😉 ) Margaret who can always be counted on in a time of need. I’d do anything for my friends, and they’d do anything for me. That’s the way it should be. Friendship, I mean.

It hasn’t been always easy, mind you. Stefano and I lost a couple of friends because of myeloma. They were probably too freaked out about it and didn’t how to behave around me or what to say. I’m happy to report, though, that those were the only ones…

But, getting back to my question of the day, what if I meet someone now, and that person is afraid to get to know me because of the cancer? Well, to be really honest, I don’t need people like that in my life. After all, statistically, I’m more likely to die of something unrelated to My Eloma. So avoiding me because I have cancer cells in my body is nothing short of silly…

Besides, myeloma is not my main topic of conversation. If you bring it up, fine, no problem. I’ll talk about it…in a no-nonsense, straightforward way. 

But if you don’t, I’d rather chat about other things: the weather, food and recipes, cats, the Olympics, bird watching, going on trips, the U.S. presidential election, movies, books…

Normal stuff.

I’ve been having some trouble posting TAB’s update on the blog. I mean, I just can’t figure out how to include his lovely figures and graphs inside a post, let alone upload his pdf file or parts of it (which would be the best thing, since it looks great, and it’s easy to understand). Very frustrating…

Sigh. I feel so hopelessly inadequate when it comes to technical stuff like this…I’m stubborn, so I try to work out things on my own. Sometimes I do, but this time I didn’t. Oh well…

Anyway, I’m in the process of figuring it all out with the help of a few computer experts, so I’ve decided not to do a “copy and paste” (text only) for now. 

In the meantime, I’d like to apologize to everyone, especially to TAB. But, on the bright side, it’s only a matter of time…My techies are very busy these days, but they’ll get around to helping me…eventually! 

(Pinga and her reflection are sorry for the delay, too, as you can see from their contrite expressions… 😉 )

P.S. HAPPY ANNIVERSARY, MOM AND DAD!

(Note: my parents have been married for 58 years!)

What I read earlier today took precedence over everything else. I mean…HUGE SHOCKER! Or so it seemed, at first…

A blog reader sent me the link to a VERY interesting article written by myeloma specialist Dr. Brian Durie titled: “Can Cookies Cause Myeloma?” (published ON my birthday, too!!! Argh!!!). I urge everyone to read it. It provides heaps of food for thought: http://goo.gl/Nfznb

But…cookies? Surely…NOT COOKIES!!!

I was absolutely stunned. I mean, okay, I’ve known for years about acrylamide, a well-known carcinogen that gets released whenever we fry, roast, bake or even grill starchy foods at high temperatures…In fact, I began researching and writing about this noxious chemical in 2008 (for more info and links, have a look at my March 20 and March 30 2008 posts…). 

I’ve also known that there are a few things we can do to inhibit the formation of acrylamide…For example, we can add chopped-up rosemary to our fried, baked (etc.) starchy foods. I even add rosemary to my pizza dough. Anyway, if you would like more info on rosemary and acrylamide, here’s the direct link to my March 20 2008 post: http://margaret.healthblogs.org/2008/03/20/what-me-worried-hah/ 

And Dr. Durie provides us with a helpful link to a “how to limit acrylamide” article: http://goo.gl/vZGs3

However, this is the FIRST TIME I’d read about a possible DIRECT link between the acrylamide released by cookies (etc.) and myeloma. So, after devouring Dr. Durie’s article, I went to the source–the Netherlands study itself: http://goo.gl/YpEY1

Well, phew, the news isn’t THAT bad, is it? Or rather, let me rephrase that: the news seems to be fine for women, much less so for men. The authors in fact found that acrylamide may increase the risk of multiple myeloma and follicular lymphoma in men. No association found for women. (I need a cookie to recover from the shock, now… 😉 )

Here is a possibly important quote from the Dutch study: Acrylamide intake was estimated from a food frequency questionnaire combined with acrylamide data for Dutch foods. Okay. Dutch foods. Not Italian. Can I sigh with relief? Probably not… 

And in fact Dr. Durie asks: Can what we eat or drink cause cancer? Excellent question. I think the answer is a resounding YES. And those of us who already have cancer should avoid eating foods that we know are chock-full of noxious chemicals. Oh, and beverages, too…sodas, etc. Without going crazy, of course. I mean, stress is bad for myeloma, too! Eh. 

I’d like to end today’s post by thanking Dr. Durie (whom I met a few years ago here in Florence at a MM patient/doctor conference) and saying that I’m really REALLY REALLY happy that our myeloma specialists are beginning to pay attention to the importance of DIET…A huge step forward in the right direction. 

Just my opinion, as usual…

Today was my last day of work. I’m now officially on holiday until the beginning of September. 🙂 Well, okay, it’s not going to be a proper holiday. I mean, we aren’t going anywhere. We’re staying in Florence, and in fact Stefano is going to keep working so that he will be able to take time off later on in the year. Therefore, in order to keep busy AND give us a little extra income, which is always welcome, I’ve accepted a big translating job…No rest for the weary! 😉

But c’mon, to be super honest, August is a terrrrrrrible time to go on holiday, at least over here. It’s the period when most Italians go on holiday, which means it’s unbelievably expensive to go anywhere/do anything. And everything’s overcrowded. Besides, with at least half of the driving population gone from Florence, it’s actually quite nice to be here right now. There’s very little traffic (BONUS!), and you can park anywhere… 

The only BIG problem is the horrendous heat. Eh. According to weather reports, we aren’t going to have a respite from the current, awful heat wave until the middle of August. Uffa. Oh, and next week we’re going to be hit with what’s been called the “African Dragon.” Even worse! Yikes! Oh well, I always try to see the positive in every situation: the heat gives us the purrfect excuse to cool down with some gelato (and we happen to live very close to one of the best ice cream places in Florence…)! 😉

Okay, enough…let’s get to the FUNNY part of the post! A friend sent me this joke, which I enjoyed very much…Besides, what better way to celebrate the beginning of my, er, “not-really-a-holiday holiday” than with a joke? Oh wait, one more thing: TAB sent me his update. I’ll read it tomorrow and publish at least the first part (it might be too long for just one post). Sooo, stay tuned! And stay cool! 🙂

Tom’s scrotum…

The best story of the year doesn’t give the proper praise and credit for this painful but understandable story as told by a loving wife…

The pastor asked if anyone in the congregation would like to express praise for answered prayers.  Suzie Smith stood and walked to the podium.  She said, “I have a praise.  Two months ago, my husband, Tom, had a terrible bicycle wreck, and his scrotum was completely crushed.  The pain was excruciating, and the doctors didn’t know if they could help him.” You could hear a muffled gasp from the men in the congregation as they imagined the pain that poor Tom must have experienced. 

“Tom was unable to hold me or the children,” she went on, “and every move caused him terrible pain. We prayed as the doctors performed a delicate operation, and it turned out they were able to piece together the crushed remnants of Tom’s scrotum, and wrap wire around it to hold it in place.”

Again, the men in the congregation cringed and squirmed uncomfortably as they imagined the horrible surgery performed on Tom.

“Now,” she announced in a quivering voice, “Tom is out of the hospital and the doctors say that with time, his scrotum should recover completely.”

All the men sighed with unified relief.  The pastor rose and tentatively asked if anyone else had something to say.

 A man stood up and walked slowly to the podium. He said, “I’m Tom Smith.”

The entire congregation held its breath.

“I just want to tell my wife the word is sternum.”

Yesterday I went with Stefano to the allergist who had given us quite a scare on my birthday (July 18), telling us that Stefano was at risk of developing something really nasty and chronic because of his nasal polyps and related breathing problems—asthma etc. (I didn’t know that high levels of eosinophils can wreak so much havoc in organs and tissues…  😯 )

Anyway, the allergist immediately sent Stefano for all kinds of blood and urine tests. When the results arrived last week, I had a look at them, and yes, Stefano’s eosinophils were quite high.

But the GOOD NEWS is that the treatment (basically, a cortisone bomb!) has worked. Stefano is breathing normally again and has no asthma; he’ll repeat all his tests in about a week just to make sure, but things are looking good. In fact, in answer to my question yesterday, the allergist told us that Stefano may NOT need surgery to remove the polyps, which has become my main goal in life right now…avoiding surgery, that is, if at all possible. But we won’t know that until he’s over the acute phase…

In the meantime, so far, so good. Stefano can smell again, after months of having a “cemented” nose, poor sweetie. In fact, he told me that the other day, as he was washing his hands, he got a whiff of something that smelled simply awful…then he realized it was his bar of SOAP. 🙂 Even the slightest, sweetest scent can be overpowering to a nose that hasn’t smelled a thing for months!

But that’s not what I wanted to tell you today (!), which is actually this story: yesterday, after meeting with the allergist, we went to pay for the visit. Two secretaries were sitting behind a large desk in front of which there was an air conditioning unit that was on almost full blast, which is soooo unusual for Italy (see my July 9^th post) that I smiled blissfully and remarked: “Ohhh, this is lovely! I could just stand here all day…mmmmh!”

The guy who was helping us (let’s call him “Gianni”), looked up from his computer, smiled back at me and said: “Do you know that you are the FIRST person to say that since the beginning of summer? If people say anything at all, it’s only to complain about how cold it is in here…They always ask us: ‘how can you stand it? how can you stand it?’ But we think it’s fabulous…”

I commented: “But it isn’t even THAT cold. It’s just wonderfully cool …”

Gianni said: “Ah, you have no idea, signora. I assure you that we really do get all sorts of comments…I mean, people even get ANGRY at us that the AC is turned on…”

“Angry? Well, that’s incredibly silly!!!,” I exclaimed. 

Right on cue, another family unit walked into the room. Two of them, clearly the parents, stood to one side, just out of reach of the AC unit. The daughter, a woman in her 30s, came over to stand next to me. But, feeling the cool breeze, she turned around, glared at the AC unit and declared, in a rather unpleasant tone of voice, “Gee whiz, this AC is freeeeeeezing! Why do you keep it so high?” She moved away from me, muttering, “I have to be careful not to stand in a draft…”

Gianni looked up at me, winked and whispered, “See what I mean?”