The most wonderful time of the year... sometimes.

M has been home now for two weeks - tomorrow. She hasn't needed any blood transfusions since she left Sloan, but she is getting a platelet transfusion today. 

On Monday (12/17) she started a 10-day treatment of Vidaza/Dacogen again (7 days of Vidaza, 3 days of  Dacogen). She is at Steeplechase again. This is the same treatment that she received before the harsher chemos. It is basically a treatment for MDS, which we know, hers progressed into AML. Since she opted to not go through with anymore in-patient chemos as of now, this is the best treatment they have to offer her. She seems to have responded well to her treatment in Sloan; although it did not send her AML into remission, she didn't receive too many complications from it while in the hospital or so far while at home. She has a visiting nurse come to house 1-2 times a week to check on her. 

She's been spending her time home being incredibly happy, and has gotten out to go shopping and pick up some things for everyone. This makes her extremely happy. She is really the most self-less person I have ever known. 

I remember that this treatment doesn't make her feel like she is on top of the world, so my main concern is that she has a wonderful Christmas and New Year. Or as wonderful as possible. She will end the 7 days of treatment on Sunday 12/23 and will have to go for the three shots of Dacogen 12/24, 12/25 and 12/26. I think I am bringing her all three days. 

Speaking of Christmas and my birthday - I am asking that this year instead of buying me a present or coming to visit me or getting me a card - you do something thoughtful for someone else. This will make me exceptionally happy. If you feel the need, please go to Steeplechase and donate blood or platelets for my mother. The information is provided in the link below.  

               Steeplechase Donation Center

OR: 
Send the families in Connecticut some Christmas cheer. You can send a Christmas card to this PO Box: 


              P.O. Box 3700
              Newtown, Connecticut 06470

OR: 
 you can donate anything however you wish by visiting on Facebook: 

              100 Cups of Coffee Support For Newtown CT

OR: 
               help out the Hurricane Sandy victims at: 

               Restore The Shore Projects  by purchasing an article of clothing to show your support for the re-building efforts of the Jersey shore. 100% of all profits go to the relief and aid of all victims - AND their selections are really cool. I already got my t-shirt! 

OR: 
              The Network for Good has some other charities and organizations listed on their site where you can help out Hurricane Sandy victims. 

OR: 
              Find a place to donate your time like at a soup kitchen, or even wrapping gifts for children. Local malls usually have some sort of "Salvation Army" type thing that you can get involved with. 

This is what I ask of my friends and family this year. I have had too much heartache this year to even try to get into the holiday spirit. Writing out cards was bothersome, decorating was annoying, shopping was done without any real concern (I did everything online). I've been telling myself for the past five days that I was going to wrap gifts. I have no desire to. Maybe I will get it done this weekend. 

Also, sadly, yesterday marks the passing of my uncle Rick. He was in bad health and in all honesty I hadn't spoken to him in years. I know that he didn't usually take care of himself and wasn't a great man to everyone around him at times; once my aunt divorced him several years ago, I hardly saw him or spoke to him unless he was at a bar in town. On top of my cousins' mother losing their house this year, they also lost their father. Having to deal with all of this around the holidays too doesn't help. My sympathy toward them and their families can not be described in words on a blog. 

So, much love to you all, Merry Christmas, Happy New Year and all of those good tidings. I will most likely not be posting anything until after the new year. We will talk about resolutions then ;) 

I leave you, as always, with a Christmas quote, and picture of the man who was a patriarch, a pinnacle if you will in the spirit of Christmas for me, and probably everyone else in my family, Pop. Merry Christmas in Heaven, mate. Hope you are still singing along with Bing and Frank. 

“So this is Christmas... and what have you done?” 

― John Lennon

Quick Post

M's first weekend home was good. She had plenty of visitors. The in-home healthcare nurse came Sunday and discussed some small things with her. 

M is going back to Steeplechase on Mondays and meeting her doctors on Thursdays just like she was before. 

Thanks for your thoughts and well wishes. I will update when I have some other sort of news. 

M is Home, Finally...

Brought M home yesterday with her two sisters. I had the pleasure of driving and navigating the lovely streets of New York City, whilst in the middle of rush hour traffic down 5th Avenue. At least she saw the tree at Rockefeller Plaza. And the lights at Harry Winston, my oh my they are gorgeous. 

The staff and her team of doctors absolutely insisted that she not go home yesterday and stay another week and M refused to stay. They were only giving her an antibiotic IV and doing nothing for her fevers, anyway. She really wanted to get out of there. I don't blame her. 

Her time at home is going to be a little rough for a few days. She is extremely weak, and she is on a slew of pills that have to be taken at different intervals... it is quite confusing. Trying to get her appetite back is going to prove to be tricky. Thankfully the masks that we have aren't really necessary; there is more concern for germs through hands rather than the mouth. So M (when she feels up to it) can go out in public and do some normal stuff. She said on the ride home it felt good to be back out in the real world. You have to realize, she hasn't been outside since October 8th. Bittersweet, I suppose. 

Anyway... she is home. That is good. 

“For the two of us, home isn't a place. It is a person. And we are finally home.” 

― Stephanie Perkins, Anna and the French Kiss

.::Still Waiting::.

Went to visit M at Sloan yesterday. I am her healthcare proxy in Sloan, so it's relevant for me to be there (when I can), especially when doctors are present and delivering news. 

As I mentioned last week, no signs of remission for M regarding her bone marrow. They may bring her back in a few weeks to check it again, but they don't expect any different or more positive results. 

As for going home, we were told yesterday (Tuesday) that she should be cleared for dismissal tomorrow (Thursday). However, she has run a low-grade fever since late last week, and even though they haven't been pushing any fever reducers on her they need her fever to remain steady to let her leave. It's so frustrating. MDS/AML causes fever in patients. Recovering from chemo causes fever in patients. Getting platelet and blood transfusions cause fevers in patients. All of these things are normal, except they treat any and all fevers in hospitals as "infections" and must treat them and bring them back to normal. Well, M is not happy about this at all, as you can imagine. 

As of this very moment, I am expecting to pick her up tomorrow. As of tonight, I could get a call saying that her dismissal has been delayed. So, I have no idea when she is coming home. 

When she gets home, she has to be very careful not to get infections or fevers. She can still go to Steeplechase for transfusions and tests. She can have a hospice service come and do those at the house if she doesn't feel like driving to Steeplechase. She is still saying that she does not want to go back to Sloan (or Steeplechase for that matter) for any more chemo treatments. She is done putting her body through this torture for no positive outcomes. I am hoping that she will get a fresh perspective when she can look at things from her couch and living room, instead of from the bed in Sloan. 

That's all for now. Hopefully my next post will be when she is coming home. Thanks. 

“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” 

― Chuck Palahniuk, Choke