Please, if you wish to see the latest post as indicated by the date above, scroll down. Thanks!   ♥ 

 History and where "we" are.

I use "we" because I am forming a "team".

May 14 - first Blood test revealing alarming number cells that were either  way too high or too low - need to repeat.

May 26 -  Repeat Blood tests (a few more definative ones)  NOT good results -  CBC showed whites increasing and lots of other highs and lows. LDH way high (lactate Dehydrogenase, this is NOT a cholesterol test) referred to hematologist/oncologist.

June 9th - Saw the oncologist, spleen is enlarged, had 11 vials of blood drawn and a bone marrow biopsy and aspiration. He "believes" this is a myeloproliferative disease (MPD)

June 15 - Saw oncologist. Upon review of the tests done so far, I have a JAK2 mutation and things that are more suggestive of Myelofibrosis but he has to rule out a few other things. More tests ordered, chromisome tests, flowcytometry, BCR-ABL.

June 29 - Ruled out AML (that is a good thing), however risk of this developing into that is there. And for those that think this is CML, it is not...Diagnosis: Primary Myelofibrosis " a rare disease" positive JAK2 mutation, large spleen and a few other things thrown in there too, like thrombocytopenia - all of which I will explore with the specialist at UCSF when I see him.   He (the Dr.) suggests considering taking Hydroxyurea, (chemo) - a pill a day.   I decided against that until I know a lot more about what stage this is and what else is being does for it and can explore well the risks and benefits of everything discussed.

Will see the specialist at UCSF on August 8 with some more new blood tests in hand.

Will update more then.

In general, I feel good, playing lots of tennis, am more tired than normal at night (particularly noticing it because my nickname is the energizer bunny!) and my tummy is "puffy" from the spleen being enlarged. A feeling like being just a little pregnant. Each day I wake up and just vow to make the best of it. What is hard is the derailment from my plans - and the not knowing right now what's next. Sort of a limbo. Have decided to look for work I can be passionate about in anticipation of having to stay here, feeling/hoping this is chronic for now.

I also have to share I am not being "Polyanna" about this. It is scary and a bit discouraging to be so "derailed" but I'll make the best of it, by choice, day by day.   

UPDATE:  JULY 23   ♥ 

Until I have the specialist's appointment on August 8th, there is nothing significant to report other than lots of caring, loving people asking how do I "feel',  and how am I doing, so I'll address that.  

I feel the same as I felt before the diagnosis.  Playing tennis, (well) working, gardening, all the same things, Just really tired at the end of a day, that is a change for me. And still my belly is (more) puffy and tender to the touch on the left. 

I am learning so much and have changed my diet, and will keep changing it via suggestions offered to me by professionals (RN's) and people whose lives, and lives of others they have worked with have been changed by diet.  I am taking charge of a positive attitude and the direction of my healing every day, and am learning so much about this condition. As I believe knowledge is power and action affects change! 

UPDATE: AUGUST 1  ♥ 

Saw my internist last Thursday, belly too puffy, tender on the upper right. I'm active but tired and when I eat I get full so fast. Have been very (wondefully) busy with family and now that they are gone after 5 days I will rest, as my body is telling me to. But...If laughter heals, I should be in complete remission because we laughed for 5 days, almost all the time! So wonderful.  Am going to have a sonogram and several blood tests this Thursday prior to my seeing the UCSF Hematologist/Oncologist on the 8th. These recent tests might tell whats going on w/ my spleen, (liver?) belly and whatever else that magic machine shows.  Have been trying to eat very well and use a little bit of what many people who have are in the "remission mode" felt helped them.  More at the end of this week.

UPDATE: AUGUST 9 ♥

Saw the Leukemia/Bone marrow specialist at UCSF yesterday. A very thorough visit. Labs done before the meeting so they were current when we met.  I am impressed with the doctor because he is so thorough in explaining things and in answering my many questions (and he is very patient, not rushed.)

I am encouraged even tho' he confirmed the diagnosis. He is however requesting the original slides and having the UCSF pathologist reread them. (I like that ...thorough)  The reason I am encouraged is he is leaving many of the decisions up to me. Yes, my spleen is enlarged but the decision to take the chemo (hydroxyurea) is my decision to do when the spleen gets too large. And yes clinical trials for the JAK2 inhibitor will be in order down the line at the right time and when the right trial comes about, meaning a phase three, dosing trial as opposed to a doubleblind placebo trial.

I also feel encouraged that nothing is immediate because this is in the late chronic phase as opposed to the accute phase. For me that means that I can pursue my alternative ways of dealing and healing to this. I believe I can make a difference and not have it shift into the accute phase where very serious treatments are manditory.  I plan to begin light frequency therapy (see featured article, click on Blogs/Posts) I am changing my diet, maintianing my excersize routine and surrounding myself with positive, loving, healing people.  If I can hold this at bay, even if it has to be at this stage, I will consider that a success. 

I will be getting workups every three months to see where things are, so it looks like living in mexico is out of the question, but it really doesn't rule out anything else.  The main Rx is : Live each day to the fullest!

UPDATE: SEPTEMBER 14 ♥

I don't know enough yet about the current new diagnosis to write a medical update  - CMML - Not to be confused with CML.  For a bit more see the latest post - How Am I Doing - Non Medical. That will update anyone interested in how I am feeling about this new news. Bottom line is - It scares me, but I will learn more about it and post what I learn and how I'll deal with it, in "my way."  

Still, of course, the path is, as it is for all of us - to make the most out of each and every day and count the blessing around us.