MD Anderson & Clinical Trial; Meet Up with 123er

Just returned from an appt at MD Anderson (top-rated cancer hospital) with one of the top 2 MDS doctors and researchers in the US. My sister was available at the last minute and drove her new car, for which I am very appreciative and very grateful. I went for a first visit to meet Dr. Garcia-Manero, get a 3rd perspective and discuss possible clinical trials. Absent a Stem Cell Transplant, Myleodysplastic Syndrome is not curable and a certain percentage of patients sooner or later develop Acute Myloid Leukemia. None-the-less I was disappointed. The trial he wants me to participate in is actually one of his, a Quality of Life issue to determine if a smaller dosage of the only 3 standard drugs (for the past 15 years there's not been a new one!) is just as effective as the more toxic higher dosages. The purpose being to help a patient become transfusion free.  It's a randomized study, they put your name into a computer and the computer assigns you which 1 of 3 options. One of the drugs, Decitibine, has more negative side effects (I'd already discussed these with my local doc and he's against it entirely) but both it and Vidaza lower your current counts for several months before you even see any difference. That scares me since at present it's only my red cells that are affected by the bone marrow cancer. My immunity would be compromised to a greater or lesser extent, for example, ALONG WITH my red blood cell counts which are low to start with. I would need to travel to Houston (this time it took us between 5-1/2 and 6 horus to drive) every 3 months for at least a year and incur the costs of lodging and perhaps car rental (my car is 17 years old) to get there on my own dime. I need more information, discussion, ask a LOT more questions, etc. I need to discuss this with both my local hematologist/oncologist and my Hem./Onc MDS specialist in Dallas before I decide anything. The truth is that I'm going to end up on one of them (at a higher dosage and therefore more toxic) in probably short order already, but my doc wanted to wait until something in my current counts changed significantly. Apparently the clinical trial would start as soon as I'm ready for it to. I DO NOT WANT TO GO ON CHEMO! I was already debating whether I would do it despite the ramifications of not doing so.

This trip I the had company of my sister. I expect anything in the future will be me, myself and I for as long as I can or by public transportation, which has it's own drawbacks and $$$. Oh, and I'd need to get yet another somewhat but thankfully short-lived painful Bone Marrow Biopsy every time I'm there. NOT PLEASANT!!! I had one Friday. I can't even take a bath until tomorrow, so church was a no go this morning. It'll be sore for a while. Not painful unless I push up against or bump that hip. At present I've got a big pressure bandage over the site on top of an illiac crest. At least this one wasn't as painful as the first 2.

And because my immunity will be compromised by the chemo, I'll need to move and sell my house.. I've known that since September. I don't want to move, but I REALLY REALLY need to. It's just so hard to contemplate because I've lived here for almost 33 years. I won't have any help doing so. Can't afford the considerable necessary repairs and I'll need the $$ to live on.

But the BEST part of my trip is that I got to meet up with Simcha, a cross-stitcher who also posts on the 123 Message Board!! She's an intelligent, fascinating woman and it was an absolute delight to meet her. If I go back to Houston, I hope to meet up again! Would you believe that we talked non-stop for 1-1/2 hours and only a couple of those were about cross-stitch and that was telling each other which fellow 123ers we'd been able to meet in the past. Best possible way to finish out an otherwise very rushed, very overwhelming day!

After I confirmed it was a one-day only appt (usually they are 3 to 5 days!) I reluctantly left Oscar home alone. I'd intended to take him to the vet because he's not been acting Oscar-like lately. He ate and drank very little and has been very very clingy since I returned.  I'd have boarded him but his shots weren't up to date. I'd had to leave the cats home alone when I was in the hospital for 8 days last fall and with Henna having crossed the bridge recently, I'm sure he felt abandoned. Poor "little" guy.

I don't know that anyone is interested in this stuff. Definitely venting to some extent. I'll probably delete this post in a few days.

Missed the North Texas GTG

And really bummed about it. It'd been on my calendar since late summer but a last minute specific request to assist in an JEOC activity meant that I wouldn't even arrive until mid-afternoon on Saturday, along with the fact that driving 15 miles WEST to Fort Worth meant it'd that much further and take a LOT longer to drive back EAST to North Dallas. By 1pm I'd given totally up on the idea and ended up staying until 6. As it turned out I did very little and probably could have just got up and left an hour after I arrived.  Wish I had! : (  The organizers, Lynn and Jenetta, reported 32 attended. They distributed stuffed goodie bags with floss and designer-contributed charts (including Sue Hillis) and other small treats as well.  Stitchers brought stitched designs to show off, others to work on, snacks to eat and charts and other items to sell or give away. Some visited a couple of local cross-stitch shops, and all went out and about to shop, eat and/or maybe get a quick glimpse of that part of Dallas. They'd even arranged for those flying in to be picked-up at DFW or Love Field. From the pics it looks like everyone had a really wonderful time and a heck of a lot of fun. There's already talk about another GTG next year!!

Happy to Recommend New Blog

It's not cross stitch or needlework, but our 123MB friend, Rowland Cole, an amateur but professional quality wildlife photographer from England, has just started a blog:  Through My Lens. He takes beautiful photographs and tells wonderful stories about his photography adventures. He has the most amazing way with both wild and domestic creatures. Even baby squirrels want to go home with him. Check out his new blog!

DFW Stitchers July 21st GTG

Just a few members of the diverse, international group of stitchers who frequent the 123Stitch Message Board. The GTG was hosted by Mary Ellen, who until last week I had no idea only lives 2 blocks from me. The GTG was to meet and greet Martha (turquoise T on right) from Galway, Ireland, vacationing in Florida who DROVE from Orlando to visit her. Other stitchers L to R: Jenetta, Leslie (who drove up this morning from San Antonio, Lynn's husband, Lynn, Bonnie, Me (up front on right), Mary Ellen, Martha and Melissa. After meeting at Mary Ellen's house, we went to Stitch Niche. While they shopped for fabric or fibers or charts, I was looking at frame samples for my ABC's of Aging Artfully. I was ONLY looking (you know where this is headed already, I'm sure), but maybe if I just got the frame I could do everything else myself. Needless to say, with their current 25% discount on framing and even though Doug offered to put the "sticks" together for me (which they usually charge for) ...  I haven't had anyone else frame anything for me since 1990. I recall that vividly because it was  a finished piece  with 9 different hearts that I was working on as a gift for Mom as I sat and watched TV when suddenly it was the first night of the Gulf War and CNN was televising live from Baghdad as bombs burst all around the American Hotel. Here 22 years later I can't look at the framed piece hanging on Dad's living room wall without thinking about it how surreal and disturbing it was at the time, stitching hearts while bombs dropped on strategic targets (and "collateral" civilians). Anyway, I haven't had anything framed since then.  (Here it comes, as you knew it would): Until now - that is when I get the piece finished. I know how meticulous they are with stretching the piece, something I could probably do but no where near as nicely. And, knowing me all too well, even if I had a frame specifically cut to order, the task of  actually mounting, stretching, etc. would probably take me another decade before I actually got to it. But I, who am usually so frugal that my brother frequently comments can squeeze the ### out of a buffalo nickel, can justify the whole schmooze since I opted for a frame that cost about 40% less per linear foot than the one I'd originally picked out (which actually looks just as nice or even better). So of course that reduced the total price by a full 1/3, plus the discount ..... Nonetheless, it is a splurge. I guess after 22 years I deserve one. :D  Above photo taken with Lynn's IPad and used with her permission.