Definition:
: to make (someone) less determined, hopeful, or confident
: to make (something) less likely to happen
: to try to make people not want to do (something)
I wasn't going to post today because we are both so very tired. He has worked the last two days from noon to 5:00 p.m. I have been taking him lunch so he can take his meds. We both have been experiencing the post transplant blues again this week. We both have been a little discouraged.
He is more than ready to get back to his normal routine. He is ready to be able to do little things around the house. He keeps mentioning burning the leaves and I keep shaking my head, "No". I'm ready to have him back to helping me with the dishes, folding clothes and picking up my shoes when I leave them all over the house.
We had to cancel our weekend trip with our biker group. Our yearly holiday get together. We were going to leave Friday and come back Sunday. Our APN told us on Saturday she felt his levels would be back up enough that we could make it. We got our hopes up. Yesterday I sent Dr. Z's nurse an email to seek out approval. I knew what the answer was, but I guess I had to see it in writing. Her response is below:
"Dear Kathy. I hate to disappoint you, but I don’t think that it would be a good idea for Jim to skip any infusion 4 visits. He has begun the recovery stage and this time is critical. He is not even two weeks out from his transplant yet and is still very susceptible to infections. He needs to be monitored daily until he is consistently exhibiting increased blood counts and we know he is stable. It is best for him to continue with the daily monitoring. He also shouldn’t be riding any motorcycles for a while. He has had a long and difficult course and has come far since his relapse. I would hate to see anything go wrong or lose ground because of hastiness. Please understand, I want to keep him on track, to have him to continue to make progress, get rest and conserve his energy for now, and not take any risks with his recovery."
Before he got home from work yesterday I headed to WalMart to get him juice and yogurt. Yogurt so he could rebuild some good bacteria. My phone beeped as I was parking, indicating I had an email. So, I read it before I got out of the truck. I have to say I had a small mental break down. It really wasn't a pity party and I don't think I was feeling sorry for myself. I already knew her answer before I saw it.
When I got home he was already here. He is always so up beat when I walk in the door. He greets me like we haven't seen each other in days. I miss our hugs, little kisses and holding hands. He holds my hand in bed. We haven't done that in so long because of having the feeling of germs... Dammit!
I took the bags into the kitchen and he followed me. He saw my face and asked me what was wrong.. I started boo hooing again. I said, "I guess I'm feeling sorry for myself." He put his arms around me without hesitation and said, "Baby, I do that enough for both of us. What's wrong." I showed him the email. I hate dropping my problems on him when his shoulders are so heavy with his own worries.
As he finished reading it he looked at me and tells me he feels good enough that we are going anyway. That made me cry more. I then realized it wasn't really about me feeling sorry for myself. I was discouraged about how our lives have changed so much the last few years. We can't plan anything because of treatments, labs, doctor's appointment and testing. It's no one's fault. I believe at times I just can't be the strong person for him that I need to be. When I cry I feel I'm letting him down.
Today the infectious disease doctor came to see him. His port is still red and yesterday it had some crusty substance on it. He told Jim he would be back in a few. So, Jim called me at work at 9:30 a.m. I could tell something was bothering him and then he asked me if I could come up to see Dr. Ricco. I left immediately. I missed the doctor, but I got the scoop from the nurse.
A blood culture was done today and he is to have an ultrasound on his port on Monday. It is to make certain there are no blisters or anything inside his chest around the port. They are not very fearful, but this is just a precaution.
His phosphorous is very low and he has been taking the powder in juice three times a day. Not helping... So, he brought home an infuser of it today. It is a five hour drip. I also had to piggy back cefepime to it. I'm never done a double. Especially when the cefepime is a 30 minute drip and I disconnect it before the phosphorous. Scary!!!!
All we have heard the last three days is BEAM and how massive it is. He told me Dr. Ricco really bragged on how good he was doing and how good he looked. He is the one that put him in the hospital in July when he had infection. Everyone just keeps telling him how unbelievably well he is doing. A nurse told me yesterday that most BEAM patients have to be hospitalized. They just can't take it... I don't know of any of the others that have taken it.
He is still having the 'squirts'. He is up 3-4 times a night. I have been sleeping in the spare room on the day bed. My back is just about to cave in. We are both exhausted when the alarm goes off. He is more so because he is the one getting up numerous times. He asked me today in clinic if I could change the sheets tonight as he soiled them. That just broke my heart. Dr. Ricco told him today the Melphalan causes that and it may be months before it is out of his system... Penny's is having a bedding sale! LOL
Before we left clinic today he shed a few tears, too. Tears of discouragement because he wanted to be at work sooner. I looked at the time. He was lying back in the recliner in his POD, with tears just rolling down his cheeks. I grabbed his ankles and shook him and said, "Jim!!!! It's only 10:00... You have more than the whole day!"
As we went our separate ways at the elevators to our vehicles in the parking garage, he took a chance and kissed me. The elevator doors opened and an older couple heading to Infusion came out. The man yelled out at us -- "Hey, is this the floor where they give our kisses?" I don't know these folks, but I gave him a hug.... I'm NOT a hugger. We all laughed.
I stopped by Wendy's on my way back to work and got him a single burger with fries and a Frosty. He wasn't there when I dropped it off. He told me tonight that when he got there he asked Tonto about it and she said, "You gotta eat".... He still hasn't told them what has been happening the last two weeks. I've been so tempted because they take such good care of him.
Counts are coming up!!! Crap is going down.... Antibiotics in the port are stopping tomorrow. It will be pill form then. They are going to let his port rest. Dr. Ricco is talking to him at 10:00 tomorrow about the results of his blood culture today... Poppy asked me if I could be there...... Hellloooooooooo....
Day 12!!!! ONWARD!!!
Good Night and Love -- Pepper
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