Thursday, June 26, 2014

Memorial Gathering

Hello friends,

There will be a memorial gathering for Quinny Sunday June 29, at New Comer Funeral Home, 2636 Ridgeway Ave. 14626. Her obituary is now posted on their web site with all the information.

If you have been reading along, you may remember Quinny had a request for this service. She asked that we all bring some sort of piggy. It could be a bank or keychain, or anything creatively piggy to the service. She asked that we attach a $5 bill to it. All the piggies and all the cash will be collected and donated to one of her favorite charitable organizations, The Four-legged Friends Animal Adoptions, Inc. I have been in contact with their president, and they plan to find a way to creatively use our piggy donations to raise even more donations in Quinny's name.

Thank you all for your continued outpouring of love and support. I hope to see you on Sunday.


Wednesday, June 25, 2014

Rest In Peace, Dear Catherine

To everyone,

Catherine passed away quietly this morning at 10:52. I was at her side, and I can tell you that she left the way she was hoping it would go. She looked absolutely beautiful when I arrived this morning just before 8:00am. The staff had given her an early morning bath. She was laying comfortably in crisp clean white sheets. She looked as though she was taking a pleasant nap.

As the morning went on, her breath began to slow down until almost imperceptibly it stopped. Our courageous friend is completely at peace now. She loved me the rest of her life, and now I will love her the rest of mine.


P.S. We are making arrangements this afternoon for calling hours, and I will post another blog with the details as soon as we have them set. Thank you all for your wonderful support.

Tuesday, June 24, 2014

June 23 part II

I  FOUND IT, I FOUND IT! I told you there was a part II!

Hello everyone.

I thought I would give you an update on the expectations for Quinny. They have changed somewhat since this morning. The nurses I spoke to last night and this morning gave me the idea that she would be passing quickly. I certainly thought so too. Dr. Cheryl came in mid morning and said that it is possible for her to go at any time, but it is her opinion that, given her age and strong heart, she thinks Q will stay another 2-3 weeks. That is unless of course, something goes wrong with her brain (there is much speculation that the cancer has traveled to her brain, thus causing the violent seizures last night). She said the brain controls everything. If that goes, it all goes. So there you have it. She will either die really quickly, or not very quickly, or somewhere in between. She will also either regain her awareness or not. I think if Q were writing this blog, she would initiate a very morbid pool, but I'm not going there.

I let the doc know, and anyone who will listen to me know, that Q's wishes would be to go quickly and without waking up. If she wakes up, she will be pissed. They continue to be very attentive. She looks very comfortable. It is my hope she stays in this peaceful condition the rest of her life. However long that may be.

If Q were writing this, you would have heard about the fun stuff by now. Let me take a shot at it, but remember, ya get what you pay for from the blog substitute. If this was a fourth grade class, you guys would be pinging me in the back of the head with erasers by now!

Friday was the final poker night. We had a spirited table of seven. I think the highlight was when Quinny broke out a bottle of Goldschlager. Damn that was good! We all did a tasty shot in her honor. That was followed by everyone's most embarrassing "I got so drunk....." story. I won't repeat any of them here, but let's just say there was a yellow stream theme. And the winner.......the all time champion is yours truly, Baby Doll. Somehow I had the most chips at the end. Pocket sevens with only three people left tends to make me a pretty good player. Then I took my money and split. I'm told that after I left, four hearty soles stayed and played an epic game of euchre. Toby and Quinny were the champs in that battle. Quinny had a great time with a great bunch of people.
Saturday was a strange 2fer for us. Usually Quinny is the hostess with the mostess. We all know how she can put together a whale of a get together. She rocks at that sort of thing, and I believe doing so    has extended her life. Well, Saturday we were the guests at two different friends homes. We went to visit Lou and Diana in the afternoon. Lou is (now pay attention) my niece's father- in -law. Lou and Cathy hit it off one day while at one of my family gatherings. Lou is a cancer survivor, and the two of them have had a lot to chat about via e-mail. He has a home in Ontario with a gorgeous back yard. After touring that, he took us to a neat little antique shop where Cathy found some items she couldn't resist. As we parted, Diana gave Cathy a Women's Bible with with some special verses bookmarked. We enjoyed our visit, and Cathy was truly touched with their thoughtfulness.... After a nap, it was off to Toby and Pamela's house. We got the grand tour of their house and got to see all the work they have done to it. From there Cathy and I went outside while Toby and Pamela put together a delicious dinner. The orderves were fantastic, and Toby grilled up some mighty fine sausage. I hope they invite me back (hint hint). After we ate, we had fun playing ladder ball. After we played ladder ball, we read the directions on how to play ladder ball. We were both impressed with their home and their hospitality. If Q were writing this, she would tell Toby the only thing missing is an oven for Pamela! But I'm not going there. It was just a great day for both of us.

Okay, so I started this post Monday afternoon, and just finished the last couple sentences here on Tuesday morning. I am once again spending the day with Q. There has been no real change for her since yesterday. The nurses told me she had a peaceful night, while I went to her place and did the same. I brought with me some comfort items to make her a little more at home. I brought a blanket. I brought the teddy bear she loves, and I brought the big sunflower ballon T bought her. I have to say Quinny looks great! This chick knows how to rock cute, even in hospice! I don't know how she does it, but she manages to fill this place with her awesome personality. She is the best!

Monday, June 23, 2014

June 23 part III

First off, you may be wondering where is part II. So am I!!!! I just spent hours typing up a blog filled with all kinds of interesting content and has disappeared, it's gone, bye bye.......I am NOT happy.

I will just give you the most important info. I want you all to know Cathy is resting comfortably. I talk to her throughout the day, and I pass along all the love I'm getting from all of you. I'm sure she hears it some how,I know it makes a difference. The only real change is the expectations. Last night, and this morning I got the idea that she only had a very short time. Late this morning I had a long talk with the doctor here. She said that it is possible something could happen quickly, but in her opinion Cathy may be here for 2-3 weeks. She reasoned that in spite of the cancer, Cathy is young and has a strong heart. Even when you consider that she has stopped taking any nourishment, 2-3 weeks is her guess. She qualified that with this. She said that if the cancer has spread to her brain, then it could happen at any time. She said that the brain controls everything, and If it goes, everything goes. There is a presumption that it has reached her brain, and that is what caused the violent seizures yesterday. So, what we are left with is a whole lot of guess work. I continue to hope the end will come quick for her. More importantly, I hope she remains unaware and peaceful the rest of her life, however long that may be.


June 23

Hello folks, this is Scott.

As you know, today is the first day Quinny planned to stop eating. As it turns out, she got a bit of a head start on that yesterday. Yesterday was her free for all day to have any and all peeps over to say their good byes. She planned on doing a last blog of her own (sort of a bonus blog), and she was going to make a final dinner for anyone who was there at the time. Her body and her health had different plans. Sammy was visiting with her in the afternoon when things took turn for the worse. Sammy told me Cathy was not having a good day. She was not up to blogging or cooking. There came a point when Cathy became disoriented and lost the ability to communicate. Sammy was concerned and called me. These symptoms were new to me, and I beat it over there as quick as I could. Sometimes a fast car is a necessity. While I was on route, Sammy contacted hospice for some advice. By the time I got there Sammy had Cathy in bed, and she had hospice on the phone. Cathy was completely unresponsive to me. Almost immediately she began having some sort of seizure where her whole entire body was flailing around. I later learned these are called grand mal seizures. Sammy asked that a nurse come to the house to assist us. Sue, the nurse (who is a terrific lady by the way) was on her way, but it would take her longer than we imagined. Cathy continued to have on again off again seizures where the on agains got longer, and the off agains got shorter. I honestly thought she was about to die right then and there. Sammy and I would hold her and tell her we loved her throughout. When nurse Sue arrived she phoned a doctor who recommended we give her 2mg of Lorazepam to ease the seizures. That did the trick. Sue counseled us on the care Quinny would need. It was more than I could provide for her at home. Ultimately, I got her checked in at the Hildebrandt Hospice Care Center last night. I am here at her side as I type this. I was hesitant to take her out of the home she loves so much, but now that we are here I'm glad I did. Cathy has not been responsive since before I showed up yesterday. It's impossible to tell if she has any awareness of where she is, but I'm confident that if she does understand, she is glad to be here. It is a beautiful facility with an outstanding staff. They make her light years more comfortable than I could at home. It also allows me the opportunity to just be with her, and not try to be her nurse. They are showing to be very capable professionals, and Cathy deserves the very best care.

The expectations here are that Cathy is not likely to regain any awareness, and will pass fairly soon. This is what Cathy would want. She has told me repeatedly that she would just like to go to sleep and not wake up. I can tell you there have been a couple of mornings that she woke up, and was disappointed that she did. I should have a visit from the Doctor soon. I intend to communicate Cathy's wishes for a comfortable and peaceful end.

That's all I have for now. Thank you everyone for all the love and warmth. I will keep you posted.


Saturday, June 21, 2014

Memorial Service deets

I was recently told that people sometimes bring stuff to a Memorial Service and was asked what I would like. Flowers, balloons, wine, donations. So, I gave it some thought. If you feel like participating in something silly but useful, here is what I would like to see. I want everyone to bring a pig to my service. Yep, you heard me, a pig. Okay, not a real pig. A piggy bank, a piggy keychain, a piggy wine stopper. I don't care what form he takes, just bring him. And somehow, attach a $5 bill to him. I would like to see my service filled with incredibly cute piggies flaunting a little cash. Fun?? I think so! After the service, piggy and cash will be donated to Four Legged Friends here in Rochester. I think. I just contacted them to see if they would be interested in this. I would think yes but I've been known to be wrong. Really. ;-P Anyway, a local animal charity will benefit from us being silly together and that's what counts. What do you think? Are you in?

Sunday is free for all visiting day

Just a quick head's up, I'm staying home tomorrow, blogging, catching up e-mail, and whatever. Tomorrow is the day that anyone who wants one last goodbye hug is welcome to stop by. I picture myself spread out on the couch with hot young foreign guys surrounding me, fanning me with palm fronds, holding grapes although not feeding them to me, it's the ambience of the thing, you know...

So, anyone that wants to, can stop by and say hi/goodbye/love you/will miss you/or heck, even if you just want to cuff me up side the head for some reason, you can feel free to do so. I'll be up and decent by 8:00 am. Probably in bed by 11:00 pm.

84 Bleacker Road
Rochester, NY 14609
Cell for texting: 1-585-752-7074

Tuesday, June 17, 2014

June 17

Things are not going well over here. I had a seriously bad afternoon yesterday. I went to bed at like 1:30 in the afternoon and stayed there right up until 6:30 when MonkeyGirl and ElRay came over for a snack break. Have I mentioned how stinkin' adorable that kid is?? Her little smile not only lights up a room, I'm pretty sure it lights up the entire block! I LOVE her! They didn't stay long and as soon as they left, I was back in bed. Pretty much stayed there until 7:30 this morning.

Meanwhile, all sorts of weird stuff is going on with my body. My right nostril started running last night and even after sitting there and wiping it for 10 minutes straight it wouldn't stop. I finally gave up and just let it drip.

I was so tired last night that I wasn't even thinking coherently for hours on end which was a really scary feeling.

I've lost even more use of my right hand and arm. I'm finding it difficult to put my hair in a pony tail as well as almost impossible to tie my stoma cover. I've been having to request help from whomever is handy. And of course you can imagine how hard it is to type pretty much one handed. It takes forever and there are a lot of boo-boos to go back and fix!

On top of that, my neck has torqued even farther. It is now at the point where I have taken the keys to my car away from myself, no more driving for me.  You should have seen how many people were staring at me at Walmart's yesterday morning. Not even remotely funny.

This morning I was walking out of the bathroom and with no warning whatsoever, projectile vomiting happened. Weird. 

And currently, my feeding tube hole is leaking and has been all morning. Simply won't stop. I have a washcloth tucked into my pants because I've had to change my shirt 4 times already this morning. Enough, I say!

Scott's blog posts next week might not get graphic but obviously mine do. LOL!

So, where did we leave off? I think I was headed to a birthday party for Scott's SIL with a hash brown casserole in hand...

And let me tell you, that family must eat the same darned thing at every party because pretty much everyone there, even non-family members, bee-lined for the new item in the lineup and kept asking what it was. Talk about stuck in a rut! Hopefully babydoll's next sweetie will be brave enough to add a little change to their family gatherings too. Shake things up a little! Meanwhile, Cheryl (the SIL) let me go through her recipe books. I found a triple chocolate cake that sounded good. Made it a couple of days later and it WAS good but not what I would call aesthetically pleasing. They tell you to grease and flour the inside of the bundt pan. Which I did using butter flavored Pam spray. Well, the outside of the cake turned piss yellow. I tried to cover it up by dusting powdered sugar all over it, didn't help. Scott's niece is on a quest for me, she's going to find out how here Mom prevents this from happening. Sheesh!

On Monday I was in the bedroom folding laundry with Ethan when we heard Laila shrieking with laughter next door. Sure enough, he was off the bed like a shot and running out the back door to say hi to his little friend. As he was jumping over the fence, Laila saw him and went running towards him, greeting him by name. Freakin' cutest thing on earth! I swear he thinks of himself as a teenager or something. When I went to Wegman's later that day I picked up a hula hoop and a jump rope for Laila and hung them on the fence between our yards with a note saying they were from Ethan. Later on that day I was out back and noticed the toys were gone and a basket was in its place. It was filled with cat snacks and cat toys and a note from Laila saying thank you to all the cats. :-)

Tuesday heralded the long awaited arrival of Aunt Helen, Uncle Sonny, Cousin Faith and Cousin Hope. Woo hoo! I had sent a message to Faith letting her know that I planned on doing up burgers and sausages on the grill and that I didn't want to hear any lip about how I shouldn't go through the trouble, and I should rest and take it easy, blah, blah, blah. She said nope, she was hoping I cooked for them! Ha! I immediately fell madly in love with her!

So they arrived, I put on a spread, we sat and visited. The kittens were a huge hit as usual. I swear they've had their picture taken more times in the past few weeks then I've had taken in the past 5 years!!!

Here's some pics. It was funny how my visitors were going around checking out some of the stuff that was in my blog like my wine rack and my flower garden. They said they didn't realize how big the flower garden was from the pictures. They thought it was much smaller so I took a picture of myself with it to hopefully give you a better scale.

Wednesday my friend T and her DIL, Jaime, came to pay me a visit. T has told me that one of the things she most appreciates about our friendship is that I've brought new things into her life, challenged her, and made her try new things that she never would have. With that in mind, I made them enchiladas for lunch because T said she had never had those before. They were, of course, a hit. :-) Yay! We had a good visit and I even managed to pawn off some clutter. I gave my Despicable Me Blu-Rays to Jaime for her kids and to T I gave my little handheld Shark vacuum cleaner for her camp. I also promised her my Keurig amd supplies for camp. I love when my stuff gets put to good use instead of simply being donated! It makes me feel like I'm carrying on out there. :-)

T asked me if I needed her to bring me anything. I told her I was in dire need of a helium foil balloon. Preferably in the shape of a butterfly or something else that's summery. She came through like you wouldn't believe! Check out this balloon! I named her Polly Mae....

It was a good visit. Lots of good hugs, a few tears, I love my T.

On to Thursday, when Nurse Erica stopped in to check on me. All checked out well. Very soon afterwards Sammy showed up to help me pack up more crap. I had no idea I owned so much stuff! We only got through half the basement. Not that this is a mission critical type thing. I just want to make things as easy as possible on Scott and Jamie when I keel over. The less girl stuff they have to paw through, the better. On the bright side, there's a good amount of stuff staying because Jamie is a typical bachelor who owns nothing so a lot of stuff will simply stay put for his use. Phew.

Thursday night baby doll had an early night with his daughter so I was left at a loose end for the night. J-man (also known as Sushi Guy) decided to help me out by coming over and trying out my new pizza stone with me. FUN! For years now he's been trying out different pizza restaurants near his house, looking for a stellar pizza. Based on the sounds he was making while eating the one that we made together, I think he has finally found the most awesome pizza, one cooked by Chef J! LOL!

While he was here he mentioned that he had been roped into managing the caving booth at the ADK Outdoor Expo on Saturday. If you remember, that's the thing I volunteered to do last year! I told him that I thought the two best things about the booth last year were Dan, holy cow what a great speaker, so knowledgeable and sociable! Even I had fun listening to him. The other thing was having some baked goods in the tent to hand out. I then offered to bake him some stuff if he wanted. He readily accepted which made me a very happy girl! I became a baking whirlwind, of course!

Friday brought about another busy day. Kit came over at 1:00. The funny thing was that I totally forgot she was coming over, even though she was on my calendar and everything, and I was sitting there, running around like a crazy woman, trying to clean for the arrival of my godparents and thinking that I really wish baby doll had taken the day off from work to help me. No sooner do I think it and poof, Kit appears! It was a total miracle, let me tell you!

So she buzzed me on a bunch of errands and started helping me in the kitchen. It was fantastic. I can't even begin to state how thankful i was for her help that day. 

Aunt Diana and Uncle Richie showed up late in the afternoon at which point Kit left us. Unfortunately I was still a little behimd with what needed to be done so I booted them to the back patio, gave them some food to nibble on before dinner and finished up with the house. Baby doll and Jessica showed up around 7:00 - 7:30 and we had BBQ ribs for dinner. Yum! Then, because it was Friday the 13th, Jessica wanted to rent and watch the movie, Friday the 13th. I can only assume that went fine because I was asleep moments after it started. What? You didn't expect anything less from me, did you?? LOL!

Saturday we took Aunt Diana and Uncle Richie sight seeing. First stop? Pittsford Wegman's. Ha! Yeah, I know. Seems weird but I mention Wegman's so often in here and they don't have them in CT. They were pretty blown away. They have never seen a grocery store that big before! Next up was the Ontario Antiques Mall to look for an urn for me. I finally found one! I just need to see if I can get a rubber, or foam, or cork stopper made for it. Aunt Diana and Uncle Richie did me the honor of purchasing my last resting place. Wasn't that sweet? I also bought a handful of smaller containers to transport the parts of me that will be going other places. The most recent of which is the Redwood Forest, brought there by Andy.

    Then it was back home for dinner, burgers and pizza and then we were off to Painting with a Twist with baby doll's sister, Karen. And what a blast we had! This time I specifically did not follow instructions but I think the result was far better than last time. Uncle Richie also went way off course but he actually is really artistic so he was fine doing his own thing. The instructor ended up being Jordan again. I talked to her a little bit about my situation. I made her cry. :-( She wants to come over and paint one on one with me. I would LOVE that! She was actually supposed to come over today and help Sam and I do some packing but as mentioned previously, I had a seriously bad night and didn't think I would be up for it so I canceled. As you can see I've spent most of today so far blogging and I have to say, I think it's done me a world of good. I believe I've just been overdoing things and I needed a down day. Sitting in front of my pc composing my thoughts all day has provided that and I'm feeling much better.


Oh! And for no apparent reason, Karen brought me a sparkly before we went painting. She said they just wanted me to have something pretty. I love it!

Sunday, Aunt Diana and Uncle Richie left around 9:30 and then Sammy and the kids came over at noon. Not a packing day, just my one last time to see the kiddos and get some goodbye hugs. Once again, the kittens were a big hit. Instead of Cathy time, we had Cat time. ;-) Sam told me to check pockets before letting them leave because she swore they were going to wind up with at least one of the munchkins. Luckily, the kids were smart enough to leave them behind. I can't tell you how many offers I've had for people to adopt these two little trouble makers. I have to keep explaining that they're not mine to give away. Jamie said that he thinks he wants to keep them so until I hear differently, they're HIS kittens. Might be just as well because Sterling is gone, gone, gone. Thank goodness poor Ethan has had the munchkins to distract him, otherwise, I think he might be lonely. I'm now wondering if baby doll shouldd adopt Ethan after all. If he has to go live by himself in baby doll's house, I don't think he's going to be a happy camper. :-( Which reminds me, Sam told me that Mason asked if they could have my cats when I died. Ha! I believe this was on the drive up too so he hadn't even met the kittens yet and he was already trying to claim them! That kid cracks me up. I'm really glad to hear he's a cat guy though. I love cat guys! Big bummer that his parents are allergic to cats. He's going to have to wait until he gets a pad of his own before realizing the dream.

Sunday night I started feeling not so great. I was invited to go watch a movie at Karen's house along with Scott and Jessica. I wasn't really up for it but decided that I could just as easily nap over there, surrounded by people who love me, as I could over here, home, alone. So, I went. Sure enough I didn't see ANY of the movie. Got a good nap in though! And I finally got to really meet Karen's dogs. What a group of cuties! I thought that Scooter was my favorite from pictures and whatnot but it turns out I'm a fan of Stitch and Sapphire instead. Stitch was just so wiggly and happy. He kept making me laugh! And Sapphire was a very sweet puppy. Wanted a lot of attention and was very affectionate.

Phew. Are we almost caught up yet?!?

Monday I woke up groggy. Managed enough energy to do a little Walmart shopping which is where I discovered I'm done driving now, and then I cooked lunch for the Euchre boys. A little pasta with meat sauce and some baked ziti. Even half asleep RayB and I made a good showing against Jer and JT. But JT pulled a loner out of his ass at the end of the rubber match and stole the world champion QED win. Bastard. He won't be invited back again. 


So that brings us to today where I've had a nice, quiet, down day. I was really worried last night. I thought my run of having fun was over but I seem to have bounced back today. Thank goodness because there is still a lot of fun scheduled! Here's the continued lineup. JBB says she loves having a schedule so that she knows what I'm up to and doesn't worry when I don't e-mail her back promptly. She's such a mom!

6/18 - Mom and Aunt Nancy arrive for a visit. Going to Painting with a Twist with Mom and Aunt Nancy. Meeting baby doll's niece, Stephanie (aka my master taste tester of new recipes) and friend there
6/19 - Erika does a morning check in and Rob-dude, my baby brother, comes in from Boston that afternoon/evening for a goodbye visit
6/20 - Appointment with Dr. Rob in the morning to discuss 6/23 plan and one last QED poker game for the road
6/21 - Hanging out with Lou and his wife for a lazy Saturday afternoon shopping at a flea market and then it's off to dinner at Toby and Pamela's to test out Toby's new grill!
6/23 - D-Day

Okay, that right there is the blog to end all blogs if you ask me. Baby doll can't believe how much time blogging takes. I told him that I felt everyone was nuts when they were saying I should write a book. This thing is already a book if you ask me! And as I said in the comments field of my blog when I replied to Renee, baby doll has tentative plans to turn this into a book but if he falls down on the job, Aunt Helen and the entire Long Family have my permission to move forward and get it done. I know this is something she feels somewhat passionate about and I feel confident that she can make it happen. I'm pretty sure she's going to need to too because baby doll's passion lies more towards getting something done about the Physician Assisted Suicide thing. He wrote a letter to Governor Cuomo the other day. I was pretty blown away. Here's what he had to say:

Dear Governor Cuomo,
My girlfriend is Catherine Quinn. She is 44 years old and dying of tongue cancer. She has been battling this disease for two years.  She has fought it at every turn. She no longer can speak, smell, eat, drink, or even control her own saliva. She breathes through a stoma. She is in constant pain. She can not move her neck. I could go on about the scars and operations this inspiring woman has endured. The bottom line is that she will not live through he summer. I encourage you to read her blog chronicling her courageous battle. The site is Anyone who reads it is awestruck by the courage and humor she demonstrates with this ordeal. It is truly inspiring. 
Because we live in a state that does not support the Death with Dignity Act, she must suffer while she waits to die. If we lived in Vermont, she could get a prescription that would hasten her death without suffering. We both wish we lived in Vermont. Studies have shown that just by having this option available, it reduces suicides. It allows people the opportunity to have some control of their own life.
I don't know anything about the politics involved in making this a reality in New York. Please fix this. I don't care how hard it may be for you to accomplish this. It is your responsibility to make it happen. New Yorkers should not be required to suffer at end of life.
Consider this e-mail, me, shouting at the top of my lungs for your help. This should not have to happen to another living soul in this state.
Please help. I would welcome the opportunity to speak to you about this. There simply is no credible reason a compassionate thinking person would not want this available to a loved one. What will you do to change this?

Scott Barraco

Okay, I'm really done now. I'm going to go syringe some Jevity and see what other relaxing activity I can indulge in today. Maybe wrassle with a munchkin or two. They always seem to be up for a spot of fun. Although according to Mason they sleep too much......

Sunday, June 8, 2014

June 8 - Part II

Oh! I keep meaning to mention it and then keep forgetting so I'm adding a blip about it right now while I'm thinking about it. A few people have expressed concern over radio silence as of 6/23. I wanted to reassure everyone that baby doll has promised to blog for me starting on 6/23. Nothing graphic, mind you. Maybe just a note about how I'm staying comfortable (I hope!). So you won't be left in the dark about how things are progressing. He will also be posting the calling hour information on both the blog and my Facebook page when I do pass so stay tuned if you're interested in coming to see my beautiful urn. Which I still need to go and pick out! UGH! My painting should be framed by Tuesday and the framing place is right down near Pottery Barn so maybe I can kill two birds with one stone on Tuesday.....okay....back to my hammock!

June 8

There's something freeing in knowing you're going to be dead in 4 weeks. I sped through an empty parking lot the other night. Something my normal , cautious self wouldn't have even thought of doing, ever. It was kind of cool. :-)

I've also been buying scratch off tickets like there's no tomorrow. Oh wait, there IS no tomorrow. Buy away! I often scratch these while baby doll eats the dinner I made him. Scratch offs are my substitute for eating. I keep waiting to win on the Win for Life ticket. Talk about hilarious! That would be the ultimate! Of course I'd give it to someone else to cash in but man, I'd have quite the giggle fest over it first.

Okay so let's catch up on some fun stuff first.

My friend ElRay (Lynn) stopped by with her MonkeyGirl (Shailei, 2 years old) last Wednesday night for a cupcake break. OMG that little girl was the biggest bundle of curiosity and energy that I have seen in a very long time! What an absolute blast! And she had so much fun playing with Ethan. That cat is one of the most kid friendly, laid back cats I have ever met. He had a ton of fun with her too! I love following kids around to see what's going to catch their interest and what it is they find fascinating about the world. They are so much fun! There are tentative plans for another cupcake break tomorrow night. Last time it was cookie dough filled chocolate cupcakes. I think today/tomorrow I'm going to bake boston cream filled yellow cupcakes for the MG. Let's see exactly how messy we can make this little girl. Bwah....ha...ha.

Thursday was June 5th. Yeah so? Well, it's baby doll's made up holiday. There's a story behind it but I think it's one of those 'you had to be there' type of things. Needless to say, if baby doll says June 5th is a holiday, then as far as I'm concerned, it is. For his holiday, he instructs peeps to do something nice for someone.  I baked him a Happy June 5th Day cake to take into work for him and the boys. I also stopped into his workplace myself that day. I bought some flower plants to brighten up their cave of an office. I also handed out scratch off tickets to everyone for a bit of fun. I heard one of the guys hit one for $50! Woo hoo!

On Friday, Brian, Jer, and Hoyng came over for lunch. I made chicken quesadillas and chicken enchiladas for them with chocolate lasagna for dessert. It was a good visit. Jer had the afternoon off so he stayed for a beer and played some cards with me until 2:00. It was nice having company during the day for once instead of kicking around alone, trying to find 'chores' to keep me busy.

Everybody keeps telling me that I should rest, and that I should take it easy, and that I should conserve my energy. My question is why? What the hell am I conserving energy for? So that I live a little longer? We all know that's the last thing that I want. My goal is to get up each day from now until 6/23 and cram as much living s my body allows into each and every day. That's the only sane thing I can think of doing!

Speaking of energy, yesterday may have been a bit much for my body. It was the City Solve. I did, indeed, have a wheelchair for it but it was still a very long and tiring day. Other than a brief meltdown midday at a bar we stopped at, I think I did okay. When all was said and done, we walked from 11:30-3:30 and covered what we guess was 8-10 miles of downtown Rochester. I'm feeling really bad for Sammy and Mark. Not only did they totally kick ass yesterday but today Mark has some boot camp thing that lasts over an hour this morning and then he and Sam and the fam are doing a schlerdoma walk in honor of Mark's dad. Personally, I think their legs are going to fall off by the end of today but we'll see. One of the highlights of the CitySolve was that I bought my first ever growler. Or I should say baby doll bought it for me. I've heard a lot of talk about growlers but never really knew what one was. Well, I am now proud to say that I own one! Sadly, I probably won't drink it. Carbonated beverages being syringed directly into the stomach cause nausea and weird bloaty feelings. I try to stay away from beer and stick with my margaritas and long island iced teas. :-)

Tonight is a family get together for baby doll's sister's birthday. I'm bringing a hash brown casserole and some sliced watermelon. 

Tomorrow kicks off two full weeks of goodbyes. Maybe THAT's what I need to conserve my energy for. Here's my calendar to date:

6/9 - Snack time with MG
6/10 - Aunt Helen, Uncle Sonny, Faith, and Hope visit for the day
6/11 - Terri and Jaime visit for the day
6/12 - Sam comes over to finish packing up the house
6/13 - Kit comes over at 1:00 to hang out. Aunt Diana and Uncle Richie arrive at some point during the day. Baby doll's daughter, Jessica, comes over for a rib dinner and making s'mores over the fire pit.
6/14 - Aunt Diana and Uncle Richie visiting. Taking them to Painting with a Twist along with baby doll's sister, Karen.
6/16 - Justin in town. Coming over for one last lunchtime Euchre game.
6/17 - Heading to Brockport to watch the sunset with Elvisa and Jonathan
6/18 - Mom and Aunt Nancy arrive for a visit. Going to Painting with a Twist with Mom.
6/20 - Appointment with Dr. Rob to discuss 6/23 plan.
6/21 - Hanging out with Lou and his wife for a lazy Saturday afternoon.
6/23 - D-Day

Phew! Let's just hope I can hold it together long enough to accomplish all of this!!

I believe my step planter project is done. I had plans to paint it but honestly, I'm kind of liking the raw wood look. Check out the piggy in the left hand corner of the platform! How bleepin' cute is he?! That's ElRay's contribution to my little oasis. I think it added the perfect finishing touch!

So, I have been absolutely blown away by all the love and support I have been receiving from all corners of the earth. I told baby doll the other night that it's been both overwhelming and humbling to hear from so many different people from so many different parts of my life. I had no idea the kind of impact that I have had on people over the years and every day I get to hear a tidbit about what I mean to someone and it makes me cry. I think I'm going to do a little tribute post to all the wonderful human beings out there that have contacted me. But it will have to wait a bit. I just wandered outside and it is going to be a beautiful day today. I believe that I have a date with a stack of magazines and a hammock in my backyard. right now. :-)


Wednesday, June 4, 2014

Dying With Dignity

Confession time. Everybody keeps talking about how brave and courageous I am. Not so much as far as I'm concerned. A few weeks back I posted that I was back in the hospital due to a relapse of the pneumonia. It wasn't quite a lie, the pneumonia really had taken a turn for the worse but I was actually back in the hospital because I tried to kill myself. Yeah, I know. How effin' dramatic, right? It really wasn't. I figured if Heath Ledger and Anna Nicole Smith and all those other famous peeps can overdose left and right, it can't be that hard. Boy, was I wrong. I guess you need to also be strung out on some stronger drugs as well, like heroine, in order to really accomplish your goal with ease.

Speaking of stronger drugs, I've always wanted to try crystal meth. Anyone got any connections out there?? ;-)

Seriously, why did I try to kill myself? Because I hate having no control. I hate sitting here, twiddling my thumbs, wondering what new hell the day is going to bring. My death is inevitable. I should say my near death is inevitable, it's not like I still have years in me and I'm trying to throw them away. I have a month or two at the most. So since it's inevitable, why can't I go on my own terms? I tell baby doll all the time that I would like to simply walk into my bedroom, lay down, and never get up again. It would be wondrous if it was that simple.

Guess what? If you live in Washington, Oregon, or Vermont, it IS that simple. Those three states have something called
Physician Assisted Suicide or the Death With Dignity Act. You jump through a few hoops and voila, your doctor gives you a prescription for a pill. You take the pill, fall asleep, and within half an hour you're dead. BEST THING EVER. Unfortunately one of the hoops is that you have to be a resident of the state that sponsors the program. How much does that suck? NYS decides it's okay for gay people to marry and everyone from other states gets to come here and get married but I decide I want a prescription for a death pill and I can't have one because my state doesn't support it. Grrrrr.

Here's a link to an interview with a guy who was a huge supporter of the Death With Dignity Act in Oregon and in the end, when he had less than 6 months to live (another hoop) he took advantage of the act himself, the lucky dog.,32068,1508062184001_2109075,00.html

Which leads me to the options I DO have here in NYS. The only one that I know of, which I blogged about last time, is signing on with hospice and then terminating life sustaining activities. Which I have set a date for 6/23 to commence. I asked Dr. Rob how long it takes to pass once a decision like that is made. He said it normally takes anywhere from 1-4 weeks. Can you imagine?? I have to wait 1-4 weeks to die from starvation when I could take a pill and let it all go within half an hour!? Man, that really burns me. Baby doll said that after I pass he's going to get more involved in campaigning to get Death With Dignity passed here in NYS in honor of me. How freakin' cool is this man? Okay, instead of the pill, baby doll is actually the BEST THING EVER. The pill comes second. :-)

And on a side note, I've heard nothing but great things about hospice. Even my doctor friend, Karen, in Watertown said that the hospice program is fantastic. So when I complain about us not having the pill available in this state, it is in no way a reflection of what we DO have to offer being bad.

Most of you have been super supportive of my 6/23 decision. A few of you are a bit upset. I'm sorry to make you sad. I'm not sure I can make it better. All of this time I've tried to keep my blog upbeat while injecting some reality into here and there to keep us all on the same page. Now I question, did I inject enough reality into it? Do you really want a catalog of how my body is falling apart around me? Yesterday I noticed the spasms in my hands is worse and I'm no longer able to grip and pick things up very well. I'm dropping and breaking stuff all over the place. I'm having a hard time writing too. I just can't get a good grip on the pen. My neck muscles have atrophied even further and I can no longer lift my head level. I'm forever looking at a downward angle. The fistula in my neck keeps growing. You see the white, somewhat vertical thing inside the hole? That would be my jawbone, people. I can reach inside my face and stroke my own jawbone. Every morning I get up and have to figure out how to cover this damned thing so as not to gross everyone out that I see. Not to mention I don't want bugs flying in there and making a home. Ewwww.

So this is life. And it sucks. Yes, there are still enjoyable bits. I still enjoy seeing people. I still LOVE cooking. Elvisa and Jonathan came over for dinner last night and baby doll and I had an absolute blast with them. Talk about some interesting conversation! And as mentioned previously, this weekend is the City Solve which I'm actually looking forward to so long as my health doesn't deteriorate to the point of me not being able to go. We open with hospice today which means I should have a wheelchair by tomorrow which will definitely be needed for me to do this thing on Saturday. So yes, there's definitely still enjoyable bits. Unfortunately, they do not outweigh the living hell of the shell of a person I've become. I'm ready for the next step. Period.

Monday, June 2, 2014

Dying sucks

I get up every morning for no reason whatsoever. I have zero purpose in life. I wake up each morning and catalog what's failing on my body. What has deteriorated just a little bit more over the course of the night. Do you know how horrifying that is? Just sitting here feeling my body slowly destroy itself? I don't understand how people mentally cope with this situation. I'm so done with it, it's not even funny. I'd be happy to lay down right now and simply not get up again. Alas, I promised baby doll that I'd stick around for a little bit longer to give him a few last good memories with me. I guess that's my purpose for getting up each morning. Unfortunately this can't go on indefinitely and I NEED a plan. I can survive anything so long as I have a plan in place. So, I have a few more activities on my calendar that I'd like to accomplish. Tomorrow night Elvisa and Jonathan are coming to dinner. I wanted to see her one last time before I go. This Saturday is the City Solve. I'd like that to be the last BIG, good memory that I give to baby doll because we had such an absolute blast doing it together last year. I have dinner plans with baby doll's daughter and I signed up for one more Painting with a Twist class. All of this takes me to June 20th which is when I have an appointment with my psych/palliative doc. I've sent him an e-mail and told him that I would like to cease life sustaining actions as of Monday, June 23rd. I tell you this so if there is anyone out there who would like to see me one last time, you have until 6/20 to get a hold of me and make a plan for a visit. After that, I won't be seeing anyone. And please note there are a couple of exceptions to that invitation and you know who you are. After 20+ years of friendship my expectation was that you would have been by my side these past few god awful months, holding me, telling me you love me, playing cards and cracking jokes to take my mind off the fact that I won't live to see the age of 45. The fact that you chose to turn your backs on me and walk away from the situation speaks volumes as far as how little I've meant to you all this time and I have no desire to see that in person and have my nose rubbed in it. On the bright side, I think a nice balance was reached. I received love and support from some really unexpected places and am pleased that I made other quality friendships throughout my life. 

Anyway, not sure how much blogging is going to be happening from here on out. It's getting harder and harder to put my happy face on each day. I spent most of today crying. I just can't seem to stop. So thanks for reading my adventure and sending all your cards and e-mails letting me know that I'm loved and heard out there in the world. I love each and every one of you too. Even those I've never met. Be well, peace out.


Sunday, June 1, 2014

June 1

This post is for Toby. I signed up to do a class at a place called Painting with a Twist. You take a bottle of wine, go to this place, and learn how to paint a picture. I was both excited and nervous about it because I am not the creative type and it would be interesting to see how I did. Well.....see for yourself.......

Here's what everyone was supposed to paint:

 Here's my finished product:

Yeah, I laughed my ass off too. I walked around the room. There were about 20 painters in there. Everyone else's looked just like the original except for one girl. She was a little light with her blooms. Her tree looked kind of empty. Other than that, everyone else seemed to follow instructions with no problem. I have not clue what my deal is. I wouldn't tag myself as a rebel. I guess when I say I have no creative talent whatsoever, you need to take me at me word. Ha! 

Meanwhile, I kind of like it. It def fits my mood. Kind of dark with some hellfire in the background. I'm going to take it in and get it framed next week. :-)