Sharing my life and love of cross stitch. Thoughts about this and that.

Tuesday, May 7, 2019

Probably a final goodbye

I am 71. I was diagnosed with Myleodysplastic Syndrome in 2016. It is considered a bone marrow cancer and is somewhat related to but not leukemia. Certain MDS patients may convert to acute myloid leukemia AML. I won't. I don't qualify for a bone marrow transplant. Essentially it's a death sentence with no particular end date. 3 to 5 years maybe, but I had this long before it was actually diagnosed. There is no cure. I don't have any of the handful of certain genetic abnormalities they do know certain drugs will extend life. Typical comments are "trust God," "keep the faith," " remain hopeful and live your life to the fullest." First, what hope is there when you already know the end game? Live life to the fullest when one has become barely mobile and is facing this essentially alone. This is taking a toll on my little brother's health. He calls 2 or 3 times a week but lives out of state. My sister's top priority is my 94 year old Dad who has been in hospice since December and will likely outlive me.She made it clear from the outset she is not a caretaker. Her other priorities are her husband who has medical issues and adult sons who are already financially independent and focused on their own families.  A really sore point since family members who are doing just fine financially will benefit by $$$$$$ amounts if I don't outlive him by at least 30 days and until assets are distributed, long after my death. When I pointed this out to my sister, who is my only option as executrix, she snarkily replied that I should have gotten a job with a large corporation, remarried, etc. Not like I didn't try and kept getting setbacks because of all sorts of unusual medical issues that ate up savings as I managed to accumulate some. No amount of $$ will help me at this point, but still it should be mine to decide what to do with. Sound tacky? My Dad doesn't even ask about me and I've been told not to tell I'm apparently. I don't qualify for Hospice because they don't administer transfusions, which has been the only thing keeping me alive for 2.5 years. I just need them more and more often. I was in a 16 month clinical trial at MD Anderson in Houston with one of the top MDS doctors in the country. Other than getting some darker streaks of hair, it apparently had no effect one way or the other. Trips to Houston every 4 weeks were frustrating and exhausting. I got to where if the appts allowed, I'd fly down first flight out in the morning and fly back at 5 or 6 or 7. It's a 1 and a smidge hour flight. SW is the greatest and most helpful airline ever!! I've just started at new clinical trial at UT Southwestern in Dallas (5 minutes past the exit to Love Field). On a good day it's a 25 and 35 minutes. It's taken as long as 1.5 hours.

As for transfusions, I've had 43 so far, maybe more. I lost track of the count at some point and had to reconstruct the list I keep. Something like 73 units. I always say a prayer of thanks for each person and wonder who he or she is. Whether I've received blood from the same person before. It's always extremely humbling. If you have given blood, or white blood cells or platelet know with absolute certainty that almost all recipients thank you for the bottom of our hearts.

Actually, there very little left to do for me and essentially I am dying. I had hoped this new trial would have SOME, ANY positive results that would add months to my life. Instead I've had a rare and bad reaction to the Entinostat chemo and my blood counts have tanked. Turns out Yale, running the study knew it was an uncommon (rare) side effect and didn't even list it as a possible reaction. I'm pissed! The several page consent which lists the other potential side effects, also includes the "and death." I've only had 3 doses and some of my counts have already dropped by half. No one can tell me if they will come back up. I feel like I'm just pushed much closer much much faster to the end date. I'm supposed to start an immunotherapy drug this week. I don't know what I'm going to do. Its commercial name is Keytruda (same one they adertise). It has its own set of side effects, most of which issues I already have. No one can tell me whether they will be exascerbated. I just react weird to meds. They call is by a diminutive name of it official drug name, Pembro. It was developed at MD Anderson by the doctor which won the Nobel Prize for it this year, with input from my doc in Houston. In fact, if I had had any positive reaction to 3 days of azacitidine (Vidaza) in the previous trial I'd be in Houston getting 7 days of Vidaza along with Pembro there. Only I'd have to move to Houston, where I know no one and family would likely never visit, because of the scheduling. Vidaza makes me sick. Zofran to reduce the nausea causes me horrible constipation. If I drop out of this trial, I MAY go back to Dr. Garcia-Manero any way,

I have been transfusion dependent since diagnosed. The purpose of both trials is to reduce the frequentsy. I now require red blood cells weekly and might require white blood cells and platelets due to this damn chemo. It's up to me when to call it quits. 

Oh, and I can't actually afford to die. Funerals cost just too damn much and the directors claim about a 3rd of the expense. Scam!


Tuesday, June 27, 2017

Some of my Patriotic Freebies



http://bitsoffloss.blogspot.com/search/label/Patriotic

And take a moment to watch Endeavour land at LAX in 2012 and listen to the Fanfare. It's very moving. I get choked up watching this again after all these years.  My brother slightly tweaked it and played trumpet in the small musical ensemble. I love him so much! His musical endeavors (pun not necessarily intended) have entertained me, but more importantly have had great meaning in and have enriched my life. I need to tell him that. 

I also remember my dear Mother who passed on this day in 2011. I wish I had taken the opportunity to have told her over and over just how very much she meant to me.

Sunday, June 18, 2017

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.

Sunday, May 28, 2017

RIP MY DEAR SWEET HENNA

HENNA 
July 6, 1996 - May 27, 2017





July 6, 2015 - Age 19

I feel so guilty, like I betrayed her trust.
My heart is broken.

In looking up yesterday's date, I discovered that Picot,
my very sweet little white Bichon, crossed over on the
 same day in 1996. 
 
My heart is broken twice over. 

Nay, many times over remembering all my many
 furbabies over the past 60 years.

In Memory of Copper (who was taken back to the pound by my parents without even telling me when I was 10 - I wasn't allowed to mention or even cry for him - a child suffer PTSD since even thinking about him almost 60 years later reduces me to sobs and anxiety, and yes, anger). After I left home at 19: Guinevere (the rabbit), Alexander (guinea pig), 2 more dear female guinea pigs whose names escape me at this moment, Gus (a wonderful widely roaming Aussie) of cancer; Truffles I and II, Vesuvius (Vee), Brother John, Sally, and ALL the hamsters (everyone of them with a name!), Paddy Cat in 1979 and all 15 of her kittens over the years; Charlotte (a Cocker) in 1993; Picot in 1996 (Bichon) of a highly aggressive mammary cancer, Sweet Charity (a tortie) in 1998? who grieved for Picot and spang off the bed in absolute delight when I came home with Andy, thinking it was Picot finally come home; Andy in 2008 from Lymphoma (a Bichon/Lhasa), I miss my little white dogs!; Brulet (flame point Siamese) age 18 who simply didn't come home one night in 2012 - I searched for months; and now Henna. 

I miss and mourn them all! 

And now I face having to rehome my really big boy, Oscar (Chartreux) sooner rather than later, which I am already dreading.

It is already too quiet and too still around here. Even Oscar
 is unnaturally silent though I'm not sure he even realizes
 Henna isn't here. 

I didn't realize how much I was always listening for her and them all.

We get so attached and mourn so deeply when they
are no longer with us. Sometimes I wonder whether
the pain of loss is worth the incredible bonding. 

Yes, even with all those procreating, escape artist hamsters.

I hear Oscar now. He'll want me to turn on the faucet in the tub so he can drink from it, then lots of cat treats. He's doesn't know it yet, but he's going to be put on a diet. As I need to be as well.

Life always moves on.

Monday, May 8, 2017

Robot Monster the Musical

If you live in the LA area and enjoy completely off-beat independent productions, I suggest you check out Robot Monster the Musical, https://www.kickstarter.com/projects/robotmonster/robot-monster-the-musical (not soliciting $$ just the only thing I could find via Google, however if you feel compelled .. neat perks. And there's a FB Page for Robot Monster). It's based on the 1953 "worst of the worst" cult sci fi films, thus making it ripe, of course, for parody and a musical version. In case you're wondering, the Robot Monster costume is a primarily an actor (in this case a singer) in what looks like a diving helmet and a gorilla suit. That alone should start you chuckling. Funny story behind that! My brother was hired to play lead trombone on a sound track (really low budget so the producers likely couldn't pay for live musicians for each of 5 performances - which will be held during the Hollywood Fringe Festival in June). My brother's description had me laughing out loud. Whether serious or seriously silly I haven't a clue, but if I lived 1400 miles closer to Hollywood, I'd definitely go see it. 😊 

So after all the recording was over, my brother stepped into the sound booth and was asked what he thought. Jim enthusiastically replied, "Greatest Musical Ever!" (he can be prone to hyperbole) and was asked if he could be quoted on that.  Resulting in:


Serious musician. Sometimes really silly brother. He says he's going to see it - TWICE.


Wednesday, April 19, 2017

Blackbird Designs Freebie

"Now I Know My A B C's" 69w x 53h A simple, 7-stitch high, primitive styled alphabet with Caps, Lower Case and Numbers. Several designers use same or similar. Many ways to finish or use.

I may have posted this previously, but once again just in case not.  

HAPPY SPRING, EVERYONE !