Well today Chris is pretty much out of it. I forced him to drink 3 sips of milkshake and he ate 4 bites of jello. He is starting to retain fluid as I notice his face is starting to get puffy. I can't tell you how hard it is not to be able to do anything for him to make him feel better. His blood pressure is a little bit up from yesterday. His bottom number had been running around 40 but is now up to 50. He has a bright green bracelet on his wrist that says high risk for fall. I don't think he has been up since we have gotten here not even to go to the bathroom. I have spent most of the morning watching episodes of "The Bic C" a program on Showtime that tells the story of a lady who also has Stage 4 Melanoma, in the first season she refuses Chemo or any treatment because she does not want her hair to fall out, among other reasons... I am only on the third episode but its kinda funny and endearing all at once I believe in the 2nd season she starts taking treatments. I wish Chris were up to watching it but all he wants to do is sleep. I have so much paperwork for his SSI and his Insurance company to do but I need him awake to help me to do it as alot of the questions are about his past jobs. I guess I will get to it when he feels a little better. I found out online yesterday that his Ambulance ride here the first time cost over 4,000 and Insurance only covered a few hundred dollars of it, I don't quite understand why, they wouldn't let him leave by any other means. We asked them if we could just take him via car but they said we couldn't. I guess I am really not worried about it, I was just appalled at how little the insurance paid. I am really lost when it comes to finding out programs for Chris to utilize while there is no income coming in. SSI is going to take forever and I got a note saying they are going to have to do some more investigating into his actual case and he will only be able to get it if it is definite he terminal or he will not be able to work for the next year. Plus the 20 plus more pages of questions he has to fill out before they even start doing so. Why would they make it so hard for people that are so sick? Next I need to find out about any VA programs that Chris may be eligible for also maybe Food stamps. I hate having to do these things. I hate that I don't have a job that I would be able to support us and be able to be Chris's caretaker at the same time. If anyone knows of any programs and could guide me to the right places I would appreciate it ALOT. I have a million things to do and all I want to do is just hold my baby's hand and just tell him everything is going to be ok. My mom is coming to visit us today here in the hospital and I can't wait to see her and have someone to talk to while I am here. Anyways keep the prayers coming and I apologize in advance for all my venting. I love you all.
xo
k
4 comments:
I've got a call in to my sister-in-law. She's a Licensed Social Worker and works for the VA in Natch. I'm seeing if there's anything she can do for y'all. I'll inbox you on Facebook when I know something more. Love you! (It's totally ok to vent sometimes)
Hello- You do not know me but I am a Stage 3 melanoma patient that also goes to MDACC. I found in 1999 (at the age of 49)that I had the cancer. I had surgery that year only to find out that it had spread to my lymph nodes in 2003. I was on interferon for a year and have been in remission since then...8 years since the last siting! I still go to MDAnderson for check ups twice (once to oncologist and once to surgeon) a year and to the dermatologist every 6 months, so someone is looking at me every 3 months.
You need to vent because what you are doing is so very hard. Please know that MDAnderson has people for you to talk to about your financial and also your caregiver woes. I owed so much money at one point, I did not know what I was going to do. I ended up calling each place and telling them that they were one of many after payment and I am a single school teacher! Each one helped me by setting up a payment plan. It took quite a while to pay it all off, but it is done. Every so often I have to have ultrasounds or CAT scans that amount up to more than I can pay, and I call and set up a new payment plan. Places will actually ask you what you can pay a month. Anything going to them is better than nothing. Worry about that when you feel you can. I wish your husband a complete recovery. You are getting the best help possible. (My surgeon was Dr. Mansfield, and my oncologist is Dr. Kevin Kim. Both are wonderful.) Please feel free to contact me at any time. My email address is lana_1319@yahoo.com
Lana
I forgot to mention the parking at MDAnderson...
Have you found 'the brown lot'? It is where most of the nurses and students park. It is on Braeswood (I think)...I know it is on the street that runs along the side of the ROC (pronounced 'rock'). Anyone at the center can tell you where it is.
All day runs about $4.00. We often only have to pay $1 or $2 for a partial day.
From there, you take the "White" bus (free) to MDACC and just ask the driver where to get off.
I just was not sure if you were staying at a hotel with a shuttle or parking yourself and thought this might help.
Lana
Lana thank you so much for all your helpful information. I am so happy you are a survivor. I love to hear all these survivor stories they give me such hope and courage! Luckily I have family in Houston where I park my car. I stay in the room with my husband as I can't bare not to be at his side incase something happens. I will be going straight to the social worker dept here at MD Anderson in the morning to see what programs we are elegible for. Thank you so much for reading and the support!
Much love and continuous health for you.
x0
k
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