Patience is not my strongest virtue. Having to be patient, as a patient, while the Tisch MS Center finished fundraising and started building out the new lab to accommodate the study, has been excruciating.
The Subaru is long gone. The Cubs won the World Series! And we finally have a female President! I so wish I could really say that...
However, most notably in my world, we have changed my medication regimen in anticipation that Phase Two of the stem cell trial will actually, finally, truly, positively go forward! (For an explanation of Phase descriptors, click here: http://tischms.org/phases-clinical-trial)
Because the cells will be administered via a spinal tap every three months, it was decided to minimize the number of spinal taps I would be getting. Thus the medicine that was also administered via spinal tap is no more, and an IV drug is now being used to hopefully thwart continued progression.
Changing meds is a big deal, however, I still have more waiting to do. Appointment dates have yet to be assigned for my first date with the cells. Argh.
How do I keep waiting patiently? Tequila. Gin Martinis. My new favorite, The Hugo. And puzzles. Tisch still has the only FDA approved stem cell therapy trial for PPMS patients in this country, and the new lab is almost done! (http://tischms.org/believe-build-begin-fund) So I need to keep being patient.
The tunnel is still long, however at least there is now a pinhole of light at its end.
Tuesday, August 29, 2017
Update - July, 2015
Why I feel compelled to write only when confronted with an 'edge' point, is a bit of a mystery.
I write a fair amount each day, though have not had the urge to do so here in a while.
So what broke the camel's back this time? A combination of one part relief - that I am still considered to be part of Sadiq's study, even though the study has been delayed due to lab funding issues, and two parts supreme frustration with the Subaru car dealership's selling us a lemon and the mechanics putting this admission off as long as possible making me take the bloody thing in 5 times over the past 4 times, and FINALLY getting a phone call in saying they have to replace the brakes and take the engine out to be able to fix a leak in the cam case.
The reassurance from Sadiq's office is oddly not as gratifying than the victory over the mechanics proving that I was right about there being something wrong with the POS car for FOUR months, though obviously much more important.
Yet, I still have no new information as to when my second treatment will happen.
ARGH!
I heard of a story of a participant who had yet to receive any doses and was told that they would not be receiving any due to the funding crisis. To have hope given and then taken away is a situation into which no person with an illness would willingly enter. And this is why the fear of the study not proceeding was very real, and still will be until the second dose goes in.
Thus the satisfaction that the bloody car will be in the shop for at least a few days being taken apart and put back together at Subaru's expense and not mine. Needless to say, this will be the first and last Subaru in my life.
I write a fair amount each day, though have not had the urge to do so here in a while.
So what broke the camel's back this time? A combination of one part relief - that I am still considered to be part of Sadiq's study, even though the study has been delayed due to lab funding issues, and two parts supreme frustration with the Subaru car dealership's selling us a lemon and the mechanics putting this admission off as long as possible making me take the bloody thing in 5 times over the past 4 times, and FINALLY getting a phone call in saying they have to replace the brakes and take the engine out to be able to fix a leak in the cam case.
The reassurance from Sadiq's office is oddly not as gratifying than the victory over the mechanics proving that I was right about there being something wrong with the POS car for FOUR months, though obviously much more important.
Yet, I still have no new information as to when my second treatment will happen.
ARGH!
I heard of a story of a participant who had yet to receive any doses and was told that they would not be receiving any due to the funding crisis. To have hope given and then taken away is a situation into which no person with an illness would willingly enter. And this is why the fear of the study not proceeding was very real, and still will be until the second dose goes in.
Thus the satisfaction that the bloody car will be in the shop for at least a few days being taken apart and put back together at Subaru's expense and not mine. Needless to say, this will be the first and last Subaru in my life.
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