Rob's update from MRI and radiation

Hi everyone:  Rob and I went to Sudbury this past Wed. for his radiation on his spine (C7) because of the numbness in his hands and arms as i mentioned before. Sometimes i really think that he and i have blinders on. Because we were scheduled to go back on the 19 and 20th of Mar. we just assumed we would only be away for a day or two. When we met with the radiation oncologist we were told we would be there for 10 days except weekends. They don't do treatments on weekends. He expained that because Rob had just had that area done in Dec. he had to do really low doses (200 rads. each session) where normally he does 2000 rads per session. He has had too much done in that area and this is the last time he can radiated that area. We were told that if he did larger doses there would be a 90% chance of paralyzing him, but doing small doses there is a 5% chance that maybe in 5 yrs. he might be paralyzed. Dr. looked at Rob's hands and said that he has muscle atrophy which is caused by the tumor on the nerve.  Man were we ever scared. I asked Rob if he wanted to think about this first but the dr. said (go for it, that's why i brought you down for this). He seems to be pretty sure that this will give Rob back his feelings in his hands and that the tumor will shrink from radiation. I asked if this meant that chemo wasn't working and he seemed to think that it wasn't. That threw us for a loop. If this is the case why are we bothering with chemo? We met with the chemo dr. next day and I mentioned what we were told about chemo not working. Dr. said that it's too soon to tell. (Rob just had his 2nd dose this past Mon.)  Really confused now but I guess a chemo dr. would know more about this than a rad. dr.  The tumour is in the nerve channel. this is how it was described to us.  We were so taken off guard and stunned at how long we would be away from home and family. I guess by now you guys have figured out that we are really home and family people. Anyway, when we got to the motel room we both just fell apart. We both just cried and I felt so bad for my husband because he is so used to being in control of his life that now everything seems out of his control. Depending on me more due to loss of the use of his hands is getting to be more than he can handle. He has asked god to take his hair just give him back his hands. My oldest daughter told us to use her car but I thought we would only be away for a few days.  We came home for the weekend since there's no treatment till Monday. She has no problem letting us use her car for the next 1 1/2 weeks but it's hard for us to accept this. We have no choice since our vehicles are not reliable enough to take. My sister is helping us financially and our other daughter and son-in-law have covered our gasoline. Our son is cooking and freezing meals for us to help with cost of eating. We are so lucky to have family like this and while we are grateful our pride and independance is taking a ??? kicking. Somehow to us it should be parents helping their kids not the other way around. I guess we have to get over this. Rob is on Prednisone to hopefully shrink the swelling that radiation and chemo also cause for awhile which we did not know till now. His appetite is unbelievable and i can't keep up with the food he wants. It's like he has no control. I also noticed that his mood changes. When we were in Sudbury we walked to the store and the parking lots were extremely icy. I was holding his arm and he chose the worse, most dangerous path to walk. When I tried to steer him to a better path he balked me. At that point I lost it and shouted at him (what the ??? are you doing, look at the ice). He called me a few choice names and at the motel door I told him to go to the room himself while I walked to the drug store myself.  When I got back to the room he couldn't get the door open himself and was standing there.  I felt so low and bad at leaving him to manage himself when I thought he would have trouble. It's like he is in a fog sometimes and isn't thinking straight. My daughter says that Prednisone can do this. (her husband has MS and is on this drug) I'm scared to leave him alone at the motel because I don't know what he will try to do by himself.  I just feel overwhelmed with this. I guess I'm used to being home where I have family to talk to or go and visit sometimes. Anyway, we are both dreading going back to Sudbury this Mon. and we will not be coming home for the following weekend.  We will be done his radiation on Mar. 20. I know that all of you are praying for us. May I please ask for a prayer that his hands be given back to him and the radiation and chemo work. He handled this last dose of chemo so well that he is asking the dr. to keep him on the 3 week plan instead of moving him to every 4 wks. I am still worried about weight loss during chemo, especially when he isn't vomiting and is eating so much. If anyone can add anything about this I would appreciate it. Thanks so much everyone for all of your support and caring. I feel like I'm not giving much back.  I haven't forgotten anyone of you and am still praying for you. I will read here again before we leave Mon. morning and when we return on the 20th I will touch base again. Again, thank you everyone and keep fighting, stay strong and be positive.  Bluebird, thanks so much for posting The Power of Hope. I have printed it out and am taking it with us to read over and over again. Good timing. Talk to you guys when we return. All the best, Lifeline

Dear Lifeline,

Thank you so much for your post and for your courage through this hard time for Rod and you. You help us all so much by letting us into your life a little bit.

Being away from home, having strangers in control and fear of the unknown would make anyone anxious about the furture. You are so brave...

Jim

Lifeline & Rob need our support more than ever as they deal with the hard time they're going through...I want them to know they can count on us.

Susan

Lifeline-
I wish I could give you a hug....so please know that I am sending you one from Seattle. You will both be in my thoughts and prayers as you continue with treatment. I had a similar situation with helping my parents out during the surgery part of my father's treatment and to be honest, I was hurt when my parents didn't want to accept my help financially or felt bad when I took my dad to his appointments in Seattle. There is no room for formality with family....my money, cars, whatever are theirs too.
Remember, as daughters, we would walk through fire and back for our parents. I'm sure it makes your daughter feel good to be helping out and lending you both her car. I know I would feel good. I know it's hard to accept it, but if that is how she is able to help, let her help. She sounds very sweet...a lot like her mom:) Wishing you peace and hope!

Chayna

Hope all is well.


Thinking of you Lifeline & Rob,

Susan

Lifeline,

Thinking of you both.

Susan

Lifeline,

Well, you should be back home if I figured this out right...as you can see we've been thinking of you both and sending you strength.
Looking forward to your update.

God Bless,
Susan

Lifeline - how is Rob?

Many are hoping to see you here.

Susan