doing better

I started writing an email to my friend Emily this morning and ended up writing more than I thought so I am going to copy parts of the email here for an update.  I went to middle and high school with Emily in Manhattan KS.  We got back in touch via facebook over a year ago.  Emily's father passed away in October of 2009 from lymphoma if I remember correctly.  She has offered up many kind words and books that helped her during her father's illness.  

Now more than ever it's a day at a time.  Since he has been so disoriented I've slowed things down around him.  Minimal activity in his hospital room, I don't talk on the phone in here, use soft voices and explain things slowly.  I have to explain to him about 10 times a day where he is and why he is here.  He is doing much better yesterday and today.  For about a week he wasn't able to figure out how to use his cell phone but now he can, and he was also unable to tell time on the analogue clock on the wall but now he can read it.  Small victories.  I comfort him often and rub his back and tell him how proud I am of him and that I love him.  Since very early yesterday morning when I started doing this I've found a peace and comfort.  It is reassuring and relaxing for me and him when I rub his back and talk softly to him.  I lay in bed next to him when he asks me too.  

I think I'm going to spend a lot of time at the hospital until he starts feeling more clear.  There is a sitter in his room 24/7 to help out when needed.  He doesn't realized he is attached to an IV pole so we have to be constantly aware and careful when he wants/needs to sit or stand.  Because of the amount of chemo drugs and other meds he is receiving there are 7 different pumps running off 2 batteries on his pole, so that means two power cords connected to the wall and sometimes as many as three lines connected to the powerport catheter in his upper left chest.  

To minimize confusion and agitation when a new medical staff member comes in his room I go to his side and speak softly to him explaining who they are and what they are doing and hold his hand or touch his arm.  This has helped a lot.  It's important that I'm here at night because that is when he can become the most disoriented.  Since I stayed last night he had the best night of sleep in a week and I also was able to sleep for nearly 3 hours in a row, with some little cat naps before and after that time too.

He is having another lumbar puncture with chemo sometime late this morning so I will be here for him for that.  His last one was on Monday and he was much more aware of his surroundings then so I am hoping with me here by his side today's will go ok.  He has to lay flat for an hour after each lumbar puncture to prevent spinal fluid leakage which could lead to extremely painful spinal headaches.  This has been hard for him, he gets very restless and wants to sit up.  I think I will request the timing of some of his sedative meds be administered right before the procedure to help.

I have been staying at a friend of a friends house here in Houston since Monday night.  I never met her before and now I most definitely consider her a friend.  She has opened up her house, heart and family to me.  She is married and has a son that is nearly 3 years old.  She has a friend with two sons, one of which has been in remission from Acute Lymphoblastic Leukemia, the same as Chris' cancer, for 4 years or so now.  Even tho I am at the hospital much of the time it has been so comforting to be in their home.  Spending time around a child and a family doing "normal" things helps me see life outside of this disease and hospitals and treatment.  

I want to thank you again for your kind words and gifts of helpful reading.  There have been so many friends, family,  and strangers that have gone out of their way to help us during this time and it makes me feel less alone and helps carry the burden of dealing with this awful disease.

I hope you and your family are well and healthy.

Love,

Amanda

I've realized more last night and this morning how important it is for me to be here with Chris.  When I was gone from the hospital yesterday from noon until 9 he called probably 10 times.  It calms him down when I am here and after being with him last night I realize that I actually get more sleep when I am at the hospital with him than if I try and sleep elsewhere.  I don't have to stay in his room 24/7 - I can get out and go to other parts of the hospital for a breather.  

There is a sign his door telling anyone not to knock and to speak with his nurse before entering. When someone knocks and he is sleeping he wakes up suddenly and is very confused.  Earlier a tech came by to do his daily EKG test and did not read the sign and knocked on his door and came in without speaking to his nurse.  I stopped him and talked to him in low soft voice telling him the situation with Chris and how I would need to gently go tell Chris who was in his room and why and make sure Chris was ok with having the test done.  I did that and Chris was fine with having it done.  While the tech was getting set up Chris' nurse came in the room to hang some steriods Chris has to have with his chemo and another tech came in to prick Chris' finger to test his glucose levels.  

That is far too many people in the room and I asked all of them except the EKG tech to leave.  Chris became very agitated after the test, that many people in his room is not good for him.  I have written out instructions for all his nurses to read and all the sitters who are in the room with him to read.  One of those instructions is that only one thing can happen at a time in his room.  On a daily basis so many people come in and out of his room so it's hard to get all of them to understand and follow this simple rule that will help Chris out so much.

After the EKG when the other tech wanted to prick his finger for the glucose test Chris would not let her.  I was calmly explaining to him why he needed the test while I sat next to him and rubbed his back.  He said he didn't want it done today.  I didn't press the issue, just rubbed his back and told him what day it was and what time it was and why he is in the hospital and that he was doing a really good job.  He asked to see a picture of Magnus so I got one out of the drawer.  I had to take the pictures down from his bathroom door because they were making him too upset.  He would get up and go to use the bathroom and see the pictures and start to cry.  Yesterday he was confused about where Magnus is and why he isn't with me.  During the night when he was especially confused about where he is and why I had to tell him he was getting chemo because he has cancer, and he has had cancer for the last 6 months.  He remembered after I told him.  He asked about Magnus and I said Magnus is with your parents and he is happy and they are taking very good care of him, which made him feel better.  He then said something along the lines of that Magnus needed to be there and our fight is here in the hospital right now and I said yes, that is right.

One of the medications they hung earlier is a steroid and it may make him even more confused so I am going to stay especially close for awhile.  I've talked to him a few times today about how he has to have a spinal tap.  I am going to try and walk the halls with him before the spinal tap so he can use up some energy and maybe be more relaxed for the spinal tap.  He wants to talk to Magnus so I'm going to see about getting him on the phone after Chris rests for a bit.  I don't know if talking to Magnus will make him upset but I'd rather find out than not let him talk to him when he is missing Magnus so much.  

I haven't been in contact with many of you during the last few days.  With Chris being in the shape he is I really only have the energy to take care of him and myself so I can be here for him.  I know all of you love and care about him and want to know what is going on with him.  I will do my best to update the blog when I can but don't be alarmed if I'm not doing it as frequently.  

I know a number of you have sent packages to him but because he is so disoriented one of the things that helps keep him calm is to change nothing about his room and not introduce too many new things.  So until he is feeling better mentally I won't be showing him things or opening up any packages.  I know this may be hard to understand but right now he has to stay as calm and even as possible so he can get his chemo.  When he was really upset early Tuesday morning the needle in his powerport, which is the device in his chest that they use to administer all his chemo meds, came halfway out and it took a few hours for me to get him to allow them to access it again so the chemo meds could continue.  So for now the focus is simply keeping him calm so he can get the treatment.

Also until he starts understanding more about where he is and why, one of the psychiatrist and I decided it's best if he has no visitors after 5 or so and only has visitors when I am here.  They usually have various tests that happen in the morning so the best time for visitors at this point would be in the afternoon.  If anyone is thinking of visiting please text me first.  If you don't have my number leave me a comment and I will send it to you.  

At this point I think the earliest he will be discharged is Monday evening.  My friends Heather and Kierstin have been calling and emailing lots of places to help me figure out the best option.  Chris will need to come to MD Anderson at least twice a week for the lumbar puncture chemo.  When he is close to being discharged they will give me a schedule of his appointments.  Because of all the generous donations we have received we have enough money to pay for a month of lodging here in Houston.