Monday, January 25, 2010

Sunil is getting set up with Hospice

The dreaded word. The word that was said when my grandmother and grandfather both died. The word that means 'death' in my mind. The place we put humans before the "big sleep." Hospice. Gross. I never thought I would have to use that word in a sentence when referencing my husband, and I'm avoiding the use of it as much as possible. We are telling sunil that he is getting home care and when his health gets to be too much at home, we will move him to a different facility. I don't want him thinking he is dieing. I want his mind to continue to fight. I want his spirit to not have that dreaded word hanging on it. He will fight as long as he thinks he has a fighting chance. And he does have a fighting chance. Miracles can happen. The doctors are not God. Only God knows when it is time to bring Sunil "home" so I will rest in that and fight every waking minute to keep my husband strong and comfortable. His life will not end lying in a hospice bed defeated. He will go fighting and knocking down as many tumor cells as possible. His bone marrow was severely damaged from the aggressive Chemotherapy and he can no longer maintain any treatment. I am turning to food and nutrition to hold off the tumor and make him stronger. It can't hurt!

Please don't say "I'm sorry for your loss" please don't say "at least he wont be in pain" no no no. Please send your "Get well wishes" and your "I'm praying non-stop wishes" PRAY PRAY PRAY. I believe in God and I believe that Jesus was his son. For those who accept him into their life and soul they will be saved by the grace of god. There are many religions in the world. Many people who believe differently than me. But I truly think that we all know in our hearts that there is a God. One giant force of goodness that we crave to know, feel and experience. For that, I am sending out a message to everyone to pray to that God.

I have hope in my heart and a little excitement for the very first time in weeks and it is because Sunil will be coming home. People fear that I will be working too hard if Sunil comes home. I want to tell them to not worry. I love Sunil and it isn't work for me. I want to make his remaining time on this earth as enjoyable and comfortable as possible. There is no place like home. Even if it is only for a couple weeks, while his memory is still here, while Sunil is still Sunil, I want him to come home. We will have someone come in 4 hours a day. That is enough to take the load off. It is more stressful for me to go to the hospital everyday, and wait for other people to help him. He will be home with Trixie. Marlon will be able to come and see him. I will be able to sleep next to him for as long as I can. That to me is worth the little added "work" that needs to be done. Please understand that I am not trying to be difficult. Just trying to love on my husband while I still can!

Hugs everyone!!

Tuesday, January 19, 2010

Back in the hospital!

In and out of the hospital. I think Sunil and I are going to write a book on the differences of the NYC hospital system as I believe we may be one of the lucky few to frequent three hospital in one month. Sunil went in to have his spinal MRI last night and we stopped by the urgent care clinic because it looked like he had a UTI. They took blood and urine and found that his Sodium was extremely low and his platelets were low. So they admitted him last night. Today they said his CT scan showed bleeding in the ventriculs of his brain and now I guess we wait and see if the platelets will rise and his sodium will rise.

I dunno. I'm just here. trying to get a grip. trying to see what the frick is happening. trying to understand why it took 5 days to get a cbc when lassman new that he was getting a ton of infusions in rusk. Is someone dropping the ball and why can't they just catch the damn proverbial ball before I shove it up their proverbial A-holes!

K, I'm done...feel a little better.

I'll keep ya'll in the loop.

Saturday, January 16, 2010

Sunil is Home!!!!

Sunil was discharged on Tuesday. It was great and scary at the same time. We have been getting by. It's been a week of laughs, screams, cries, yells, and yawns! I'm helping Sunil transfer in and out of bed. His wheelchair does not recline so he can't really stay in it for very long which means in and out of bed ALL DAY LONG. We haven't received a call from the Barrier Free lady at Rusk which really frustrates me! I've left two messages. She is the one that can come in to our apartment and see what type of commode/tub chair would work best. I'm just going to order one and submit it to my insurance later. Right now we aren't able to get him in the tub or shower so we are sponge bathing and that sucks.

The Visiting Nurse has started to come in, the Physical Therapist started on Friday and he is amazing!

We have a whole week of appointments coming up. We absolutely couldn't stand the Ambulette service we used to get home from the hospital. They were an hour late, and had another person to drop off before us, AND took us to the wrong building AND took forever to get home. Not to mention Sunil got car sick from sitting sideways in his chair in the back of the van. SO, we are going to attempt to transfer him from his chair to the Rav4.

Sunil has been using his abs for everything and they are really sore. He hurts when he sits up and moves. Which he does all day! :) So, please pray that the muscles will continue to get strong without the pain! Also, his incision scar hasn't completely healed yet. The Chemo and the location of the scar is inhibiting it from really healing. Please pray that it closes up!

I leave you with some pics of Sunil's first week home...

Sunil being stupid and closing his eyes for the picture! :) Love it!

Cody can finally rest now that poppi is home

Below is Trixie napping with Sunil

BFFs???? Or Frienemies?

Monday, January 04, 2010

Sunil has his reflexes back in his feet! He still can't feel anything but his feet are definitely reacting to reflex tests. I'm not sure what that means, but to me, I think its fantastic!

I'm going in this week to train with OT and PT to get ready for Sunil to be paroled :) He should be getting out of the clink next Tuesday or Wednesday. At least, that is what we are all shooting for.

We will be meeting with Dr Yamada the day after he gets out of Rusk to begin the set up for radiation to his spine. Gross but needed.

So we have really created two monsters in Sunil and Marlon. When we opened up Christmas gifts we all thought it was hilarious if we shut our eyes for the pictures. So we did (refer back to the link in the blog if you want to see). It was a big joke and now Sunil and Marlon can't stop doing it! :) Hilarious right??? Annoying? Maybe... This is Marlon, Sunil and Vidyut Pachi.