Category Archives: Polycythemia Vera (PV)

Feeling Hot, Hot, Hot

Just when I think I’m managing my “new normal” something unexpected and significant interrupts my well-being.  My hubby asks, “when are the locusts arriving?”This past spring, my toes, feet, fingers, and hands began to behave in a most unusual way:  they would turn red, swell up, and itch like crazy.  It starts with a tingle,… Read More »

What Happened to the Little Engine That Could?

Invisible Illness Awareness Week September 10-16, 2012 invisibleillnessweek.comKind. Empathetic. Nurturing. Positive. Funny.  These are some adjectives that describe me.   I’ve always championed causes of the underdog and I have the resume and references to prove it.  Yet I am embarrassed to admit that until I became ill with Polycythemia Vera, I was not attuned… Read More »

Thrombosis Risk Rises in Women With Myeloproliferative Disorders – OncologySTAT

This happened to me, two years before I was diagnosed with Polycythemia Vera. Now I know that my experience is shared with other women with MPNs. The number of MPN patients is small and I do not wish this disease on anyone. Yet there is some macabre comfort in knowing that I’m not alone. Hopefully,… Read More »

The Traffic Jam Within: A Primer on Blood Clots and Thrombosis

The 6th Annual International MPN Patient Symposium began with Dr. Babette Weksler giving us a fascinating overview on the invisible threat to people living with Polycythemia Vera (PV) and Essential Thrombocythemia (ET):  thrombosis. Dr. Weksler is with the Weill Cornell Medical College and Center.  She has studied and treated patients with thrombosis for over 35 years.  Dr. Weksler focuses on… Read More »

A Few Quick Thoughts from the 2011 MPN Patient Symposium

I just got back home from the whirlwind trip to New York City for the 6th International Patient MPN Symposium sponsored by the MPN Research Foundation and the Cancer Research & Treatment Fund.  The day was filled with fascinating speakers (several of whom were new to me) and each of them taught me something new.… Read More »

4th Anniversary of my Second Chance

October 14, 2007 — a day as important as my birthday!Four years ago today, Dr. Darryl Tookes quite literally saved my life with his expert emergency surgery. October 14th or 15th could very well have been the date after the dash on my tombstone (if I had one). Dr. Tookes discovered clots in the portal,… Read More »

Myeloproliferative Neoplasms Conference – Day 1 Highlights

More than 200 cancer patients, supporters, and physicians/researchers gathered at Mayo Clinic Scottsdale this morning at 8 am to begin a lively conference about the state of knowledge and treatment of the Myeloproliferative Neoplasms — Essential Thrombocythemia, Polycythemia Vera, and Myelo Fibrosis. Dr. Ruben Mesa opened the session and welcomed everyone and reminds us that… Read More »

Calling All Folks Living with ET, PV, & MF

MPN Upate:The 6th Biennial Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms kicked off today with a great luncheon at Alchemy restaurant in Fountain Hills, Arizona.  Bob Niblack ordered perfect weather so we could enjoy an outdoor buffet and meet others in the journey with MPNs.   There are many smiling faces;  this has to be… Read More »

Fa La La La Hum Bug!

Now that Christmas is over, I’ve got to get this off my chest:  I’m glad it’s done.   All I wanted for Christmas was a “Fast Forward” button for the month of December.    Yep.  Call me  Grinch, Scrooge, Grumpy, whomever you like.    I know it’s not politically correct.   As I went about the usual December activities… Read More »

Migraines — a real pain

I learned a new word: Migraineur. Not to be confused with one who creates new business ventures (entrepreneur), a migraineur is one who regularly suffers from migraine headaches. I am such a person. They started when I was a teen, and seemed linked to my monthly hormonal cycle. A migraine headache is not easily confused… Read More »