delays in temador

4theloveofmysis

Well we again are behind in starting the five days temador. A whole month behind, but today is the day. Praying that it will go well this time. This is only the second round of the five day. We dont even know whats going on in her brain. So thankful that there are no deficits, six months in to this nightmare. I read about so many people on here that cant move one side of their body can walk etc. Wondering what this means. We have not had many things go right with this at all. Sepsis, two ports gone bad, having avastin taking away, low platlets,decreased and delayed doses of temador,neutropenic,three hospital stays and lots of tears to name a few things that has gone wrong.

momsworld

I totally understand
Hi there, I totally know what your going through. When my daughter was diagnosed with brain cancer in March 2010 we were devestated. She had brain surgery 4 days after, then 4 days later another surgery to remove more tumor. She started on temodar and radiation. Her blood counts were very low on temodar and she would have to stop until the counts went back up. She did 35 readiation treatments and the MRI to follow showed tumor growth. 3rd brain surgery to remove new tumor growth. Brought her for 2nd opinion and moved to that hospital. 4th surgery, to put in her port and to do spinal tap to r/o medulloblastoma.
shortly after that she had an infection in her incision site from reaction from something used in 2nd surgery at old hospital. 5th surgery to remove the stuff that her body was rejecting. It has been a long hard road and just when you think things are going in your favor, something else happens. I cried almost everyday for the first year. I still cry.
It amazes me to see how strong my daughter is and I wonder if I would be that strong. I pray everyday for strength so I can be strong for her but when I am alone, it all comes out. It is hard to be strong all the time

connsteele

Crying and counseling
Yes, tears seem to be part of life now. I find that I can go several days on automatic pilot, then some little thing, like seeing something that reminds me our our son's life before his illness, can start a crying jag. What especially gets to me is the music in our church or when someone asks me how I'm doing.

It's embarrassing to just break down and start crying. I can see that it makes the other person uncomfortable.

I'm thinking of finding a good counselor or social worker to talk to, but I want one who deals with families in our situation.

Anyone have any suggestions where to find such a person?

momsworld

connsteele said:

Crying and counseling
Yes, tears seem to be part of life now. I find that I can go several days on automatic pilot, then some little thing, like seeing something that reminds me our our son's life before his illness, can start a crying jag. What especially gets to me is the music in our church or when someone asks me how I'm doing.

It's embarrassing to just break down and start crying. I can see that it makes the other person uncomfortable.

I'm thinking of finding a good counselor or social worker to talk to, but I want one who deals with families in our situation.

Anyone have any suggestions where to find such a person?

hard to find
I see a counselor for all this and it has helped but, I think what has helped me the most is time. I had a really hard time finding a counselor who deals with this sort of thing. I ended up seeing a grief counselor. I have gone to some caregiver support groups at my local cancer center as well. There are many, many days that I still feel all alone though. This cancer has affected our family, friends and co-workers. I know what you mean about the music at church. I cry often at church because of the music. Don't be embarrassed about letting your emotions out because you can't hold it in all the time. All it means is that you love your son and that you are scared to death of what is happening. Trust me, people understand. God Bless you

cindysuetoyou

connsteele said:

Crying and counseling
Yes, tears seem to be part of life now. I find that I can go several days on automatic pilot, then some little thing, like seeing something that reminds me our our son's life before his illness, can start a crying jag. What especially gets to me is the music in our church or when someone asks me how I'm doing.

It's embarrassing to just break down and start crying. I can see that it makes the other person uncomfortable.

I'm thinking of finding a good counselor or social worker to talk to, but I want one who deals with families in our situation.

Anyone have any suggestions where to find such a person?

I can so relate
My comment won't be much help except maybe to let you know that I can relate and I feel your pain. My son has "disease progression" (tumor growth) after 2 years and and 3 months of clear MRIs. I thought I was coping and I went to run some errands. I was at the teller's window at the bank and I saw a flyer on the counter for "Hoopla"--a major basketball tournament that is held annually in our city. My son David loved to play in Hoopla and our whole family used to go and watch him. It was a big, happy annual event that we all loved. I don't think David will ever get to play in Hoopla again....anyway, I had a big meltdown. I never saw it coming. I just instantly burst into tears and could not stop. It was like a dam broke. The teller came out from behind the counter and got a chair and kleenex for me. I was also embarrassed and I know she felt bad but pretty uncomfortable. I've been going thru the drive thru teller window ever since and I leave my sunglasses on.

I hope that you can find a good counselor. I do think that talking through some of these feelings is a pretty significant help. I also tend to write a lot about my and David's situation a lot...especially here on csn. It has helped me a lot.

Love and blessings and peace to you,
Cindy in Salem OR (actually in Maryland right now)