May 06, 2011 - 5:17 pm
My first time here. My wife (been together 6 years, married almost 3) was dx with lung cancer 4/2009 at 47, less than a year after getting our son at 6 months who was premature with a lot of medical issues) Since then: lower left lobe removed, 6 months of treacherous chemo, on vaccine trial for about 9 months until 9 lesions found in brain treated with gamma knife, then went on chemo and avastin with unpleasant side affects. Now has cancer cells in cerebral spine fluid, has a shunt and get chemo through it. Also had 10 rounds of whole head radiation. More recently in the hospital again for some type of infection that no one can pinpoint, but there were white cells in the csf which is not good. Antibiotics seemed to help. However, she was just too weak to be safe at home (had fallen several times). She is currently in a rehab (been 2+ weeks) and after her 2nd interthecal treatment this time with 2 chemo drugs, she is weaker, has tremors again and is not very responsive. I don't think she even remembers that we (son, now 3 and I,46) were there yesterday. Dr. at rehab says at least another month while on the chemo. Also takes Tarceva.
And that is the short version. I am exhausted. It is a 1/2 hour drive to visit, but a nice facility. I have had to be her advocate all the way to see that she gets what she needs.
She does not express herself and I feel more disconnected from her that ever. I don't know what to expect - will she get through this, has her brain changed her for good? I feel so alone even when I am with her. She never tells me what she needs and does not really support me. I guess at this point I have to stop expecting that. I do talk to a therapist but it seems that the days are more and more difficult, especially dealing with an active 3 year old - who really is the light of my life.
Today I am very sad. Just dealing with each minute.
Thanks for reading. Writing helps.