Somehow ‘a prologue’ seems so much more apt as a title than ‘an introduction’…..
I’m a 42 year old female and I live in Israel. I am shortly going to receive a diagnosis of MGUS (that is Monoclonal Gammopathy of Undetermined Significance for those who appreciate weird names to describe medical conditions; and I am high-risk MGUS as far as I can figure out from my blood tests), smoldering myeloma (which I would obviously prefer over full myeloma since it is less advanced) or multiple myeloma (as the blood doctor suspects). It aint over until the fat lady sings, but basically, it will be a medical miracle if I don’t have multiple myeloma in the coming years if not right now.
The title of this blog – why did I choose Israel Myeloma?
Anyone who’s anyone in the digital age diagnosed with a serious chronic illness would surely consider creating a blog to detail their experiences, chronicle their lives, to share etc. (Personally, I find writing cathartic so a blog appeals to me.)
The names of these blogs are quite important as an identity. Some are personal, some are bold, lots are attempts at being funny (I must say that the title ‘myeloma youreloma’ particularly appeals to my sense of humour), some are fairly non-descript (including my current personal favorite nvdmyeloma). So what should I choose to define mine?
I’ve been pondering three names over in my head.
One is BC. AD. It’s a play on the phrases ‘before the common era’ (well, ‘before Christ’ really, but since I’m trying to favor the Israel connection, I am being politically correct), and ‘anno domini’. Except my phrases would be ‘Before Cancer. After Diagnosis.’ I’m a wordy person (not in the sense of being a writer, or a fan of great literature, but more in the scrabble sense and even the mathematical sense of words if that makes sense), so this potential title appealed for a while.
The second name I pondered is ‘the blog that ends abruptly’. Obviously I have to explain that title. As an information scientist (politically correct way of saying information freak) by nature, since this entire illness affair erupted I’ve spent a lot of time (read ‘every waking moment to the point of making myself more ill with worry’) researching the consequences of what it means to have myeloma.
One particularly sick endeavour as part of this was to open every single personal myeloma blog listed on a popular myeloma website and to see how old the person was at diagnosis, and what they are up to now. The aim of this was to get a feel of how deadly myeloma actually is (well, more to the point of how ‘speedily deadly’ it is), and to get a feel of how alone I was in developing a disease that statistically occurs most in people in their 60s or 70s, men and people of an African origin, when I am a 42 year old white Jewish female. What I discovered was that there are a lot of young people with this disease – some are half my age. And there are lots of people who have lived with myeloma far far longer than the 3-5 year typical prognosis. Only one of these myeloma blogs didn’t make me feel sad. And that was a man who was diagnosed with myeloma at 94 and passed away shortly after. Clearly he’d had a good innings. Anyway, I digress, but I did want to mention him since he made me smile.
One other thing that I discovered when looking at these blogs is that alot hadn’t been updated for a worryingly long time. Sometimes a husband/wife/child/parent posted a blog entry that their beloved had died. Other myeloma sufferers wrote that they were going to try some new treatment next week, and would update shortly, or similar and never posted again – i.e. their blog ended abruptly. One day, hopefully decades from now, my blog will end abruptly. Hopefully, that possible name for my blog needs no further explanation. I rejected that name too.
A third title was ‘death begins at 42’. A friend turned 40 a few days ago, and I nearly posted something about ‘life begins at 40’ on their Facebook page, which prompted me to consider the above mentioned title. I’m rejecting it as a name.
So what name for this blog would be right for me? Well, as I said before I have spent many an hour researching myeloma. What I haven’t come across is a blog by a native English speaker from Israel suffering from myeloma. Therefore, I have decided to make one aim of my blog to write on the challenges a mother-tongue English speaker suffering from myeloma would face in Israel. Not because they can’t understand the Hebrew language necessarily, but more because most of the information published in Israel originates in English anyway and why look in Hebrew for anything much except for relevant local information on doctors, hospitals, assistance and rights etc. Also, the medical system works differently here in Israel from the UK, where I grew up. Any immigrant to Israel has encountered lots of bureaucracy(!!) and strange unfamiliar customs. And I imagine the medical system is no different when it comes to ‘advanced needs’. Also, I know that Israel is a popular destination for medical tourism, so maybe I can provide some insight for such tourists. (Hence the suitability of Israel Myeloma).
Secondly, one of the passions of my life is Israel. I need to explain that it is not because I am a religious Jew (since so many people in the world seem to think that Israel is merely a desert filled with camels, when the reality is so utterly different, and most people’s impressions of Israel are completely wrong, and perhaps people assume all Israelis are religious Jews). Israel is a thriving, western-world, utterly modern country with a strong touch of religion coupled with a very strong secular identity. I was raised with a fairly-non-religious secular Jewish identity in the UK. I came to Israel to visit in my twenties, fell in love with the country and the people and stayed here. I was not interested in the politics in the slightest. I literally didn’t know what Zionism meant until the 2nd intifada erupted in 2000. At that time, I began to educate myself in depth about the Israeli-Arab conflict, and was outraged that there was so much anti-Israel feeling in the western world that I thought I knew and understood.
Literally, when one knows the facts it is a case of 2+2 equals anywhere from 3 to 5 (it isn’t a plain old 2+2 equals 4 since there are so many sides to this story!). But the ridiculous and unjustified way that Israel is presented in the western world is more like a case of 2+2 equals 22. I couldn’t live with the injustice of how Israel was, and still is, treated without speaking out, and I became an ardent pro-Israeli online advocate.
Anyway, this isn’t a blog about the Israel-Arab conflict. But it is relevant to me in a couple of ways. One is that I am reducing my activity in this passion of mine – it has always made me stressful and I need to reduce my stress levels. Sorry to my fellow advocates, but I am sure you will understand.
The second relevancy for me goes as follows: As part of my advocacy I have often founded myself proudly citing Israel’s numerous positive contributions to the world, one of which is in the field of medicine. Israel is known as a medical innovator and for excellence in medical research. I’m putting my future in the hands of Israeli medicine and I sincerely believe it offers me just as good, if not better, than the medical system could offer me in the UK or US.
Finally, I’ve often seen the lists of Jewish/Israeli Nobel Prize winners compared to Muslim Nobel Prize winners (its truly stupendous to put these figures in proportion and to see that Jews/Israelis have won so many Nobel Prizes despite being such a tiny proportion of the global population, while our Arab cousins have failed so badly in contributing positively to the world in this respect despite outnumbering us by thirty or forty to one.)
Therefore, I would like to finish this prologue with a few selected quotes from this link from the Nobel Prize website, in which 2 Israeli chemists and one US chemist were awarded the 2004 Nobel Prize for Chemistry, for their research that helped lead to the development of Velcade, which is a current drug for myeloma:
Aaron Ciechanover, Avram Hershko and Irwin Rose together discovered ubiquitin-mediated proteolysis……
The ubiquitin system has become an interesting target for the development of drugs against various diseases……
One drug already in clinical trials is the proteasome inhibitor Velcade (PS341) which is approved for treatment of multiple myeloma.
(An update: I read on the Myeloma Beacon website that a myeloma sufferer had written to one of the Israelis mentioned above and that they had got a nice reply back. Nice!)
Hence the name Israel Myeloma….
Michelle
November 2013
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