So, we had a PET scan 16 days ago showing no further spread, Cancer of Unknown Primary still in Lt. Axilla only...but Monday night, my husband became confused again, responded to a trip to the ER and IV saline, was GREAt Tuesday morning....tuesday night...confused again, back to the ER, CT scan performed...lesions found...transferred to the VA hospital, MRI perfomed Wednseday shows 5 brain mets.
So the Hospitalist comes in, and tells us, whole brain radiation is our only option, and even with that 4-6 months is my husband's maximum life expectancy, asks if we have any questions for her, answers them (some, she really PISSES ME OFF with her evasions)...example, when I ask how many brain mets and where her answer is "several" and she can't tell me where...ummm...dumb , it's in his chart, you could try READING it. then she says and this is VERBATIM although I can't type with a thick hindi accent (note, 2 of his oncolgists are also of Hindi/Farsi descent and not stupid, it's just this IMBICILE) "Thank you, and have a fantastic day"...Are you F-ing kidding me!??!?!?! hi, your husband is dying, I can't/won't give you information to make an informed decision...have a FANTASTIC day?!?!?!?! WTF!?!?!?! she's lucky I don't go postal on her...like seriously, lotto winning lucky. I get that she's young, probably only a few years out of med school, but seriously...don't they have a class in med school on how not to have the patient's family beat the crap out of you for being a totally emotionally oblivious asshat? Hell, I've had more appropriate responses to my husband's new dx from BILL COLLECTORS, who are not KNOWN for sensitivity training. when I told the hospital social worker about it, I was told I'm not the first to complain about her attitude/bedside manner/communication skills. In addition, these morons can't follow simple directions, like due to my husband's short term memory deficits, call ME (as I hold his POA) when new tests/consults are scheduled and explain it using the phone number I have provided 7 times...you know, the one in BRIGHT RED on his dry erase board in his hospital room.
So this Dr. sends him for a consult w/radiation oncology that I only find out about by CALLING my husband to let him know what time I'll be at the hospital, not getting an answer and then calling the nurses station, to be told that they are prepping him for transport per Dr. Idiot's orders. When I explain I NEED to be NOTIFIED about any additional tests/consults, Dr. IDIOT calls and asks me why I am REFUSING to allow the consult...I explain (AGAIN) that I have no problem at all with the consult, but that I need to be notified PRIOR as we live 2.5 HOURS from the hospital, and I have responsibilities to our ranch as well as to my husband, and need to make the commute to be with him.
So, I call the radiation oncologist and talk with her (not an idiot) and she explains that he has 5 mets to the brain, and wants to start Whole Brain Radiation, as he has "too many" mets for cyberknife (I am getting a second opinion from a Dr who has treated more than 20 brain mets at a time with cyberknife, and MAY take my husband there for additional treatment post-WBR if he feels there is merit to it in terms of expanding his life-expectancy). Still waiting on SGN-35 to be approved in 17 days, as my husband's tumor is strongly CD30 positive, and it's really our last hope for controlling/causing remission.
So, although we are planning to move to be near his (adult) children for what time he has left, we are not giving up hope of treatment to prolong/improve his life, although if cyberknife isn't viable/fails to control the brain mets, we will then be moving to hoe care.
I haven't eaten since monday, unless you count 2 breadsticks, 4 bites of pizza, and 4 chicken wings, and sleep terrifies me, although with him in the hospital I did get 7 hours last night...I also went and got a tattoo on wednesday...my husband's name, inside the batsignal...batman is our running gag, since he was wearing a batman shirt when I met him. Yes, it was love, or at least lust at first sight.
I tried to hit the drive thru at McDonalds tonight, but after paying for my meal, drove off and FORGOT to actually get my food at the next window...by the time I remembered, I was in my hotel room, and you couldn't PAY me to go back out for food I didn't REALLY want in the first place.
I wonder...are brain met symptoms catching? I know alzheimers caregivers develop symptomns of dementia....LOL
Anyway...trying to sleep alone for the first time in 7 years is damn near impossible, but I'm off to try...apologies for rambling, and cussing, but...yeah...it's been that kind of week