Sunday, January 15, 2012

Where To Begin...

The roller coaster ride that began our journey to this new state and chapter in our lives just keeps rolling on.

Dans new oncologist is a twit. He didnt show up for Dans appt for 2 hrs...kept him waiting that long in the exam room. Then spent about 20 mins discussing stuff with Dan that was meaningless to creating a new plan of action. Ignored Dans concerns and questions. Poopoo'd anything Dan had to say or knew about his own condition. It was a mess so Dan came home angry and called his patient advocate to change drs, which he was told would happen.

They changed the oncologists assistant a PA named Williams. So he met her once and she was alright but flat out told him he wouldnt live to see the boys graduate from high school. Ordered another CT scan and that was it. Another fruitless appt. He's not seen either since only talked to Williams on the phone a couple of times.

His patient advocate will be contacted again this week cuz things have only gone downhill since those two appts. CT scan showed more lesions and masses growing so they told him they wanted him to do another PET scan and then perhaps another biopsy.

I have to mention they act like this isnt cancer, like Dan is an idiot and because he didnt start his journey with them they cant believe what anyone else has said or what tests have shown to be fact. So thats weighed heavily on Dans mind and heart(mine as well) because he feels like they just dont give a damn and want to take away his disability and thereby take away our only source of income and its petrified him ever since. He lives in fear of this daily.

So Dan was told the PET scan and biopsy would be up to him because they could be dangerous given his low platelet count and enlarged(and still growing) spleen. He decided to go ahead with the PET but didnt feel comfy or safe doing a biopsy if they decided that was what they wanted. So onward to the PET we went.

In the meantime, after that CT Dan became very depressed. Here he was being told he was full of crap about having cancer(even tho he didnt say he did...the biopsy and testing done in the summer of 2010 told us that), that whatever was going on would kill him before his boys finished high school, and that noone really gave a crap because drs and such werent trying to help him fight this just run him in circles. That led to him feeling noone in his life outside drs cared either because we couldnt understand all he was going through. He was right, still is, we cant understand 100% what he's feeling or going through but that shouldnt discount our love and devotion to him(especially mine) but it him anyway. That was hard on me and angered me despite knowing his thoughts came from a dark and fearful place.
So for a week after the CT results he talked about ending his life, solving all problems by ending it all(I told him it might solve his issues but only add to ours). Every day he cried to me in our room and talked about how noone loved or cared, his kids didnt wanna play with him or love him or any of it. He was wrong..dead wrong but you couldnt convince him otherwise(still cant). Every night I clung to him and told him of my love and devotion and fears and that his reality wasnt our reality and wasnt right that he was coming from a dark spot and I was sorry I couldnt fix it for him or take any of this away...which Id love to do even for a few moments a day.

Called a suicide hotline and got them involved which he kept bugging me to do and once done...angered him.
But we got through it and he settled a bit. I know the thought is still there but the sadness has ebbed a bit and we have a reprieve from the constant talk and that takes some weight off my heart and shoulder cuz I just was falling apart and had nowhere to turn to let it out. How DARE he think ending his life would be better??? The suicide hotline lady said it comes from a selfless place within those who think of it...I call BS!! Its a selfish act. I realize Im alone in this thought but from my perspective and knowing my husband and what he's been through and going through it would be very very selfish on his part because thats all he's known lately is selfishness. I understand why its that way but I dont care for it and dont believe it has to be that way but for him it does.
All he was thinking was ending HIS sadness and fears...thats not doing anything for us just himself.

PET scan came and went and showed lesions all over inside and outside his liver...some had mild metabolic activity while others didnt. His oncologists wanted him to do the biopsy...he refused. He could easily bleed out. They'd have to flood him with platelets before and possibly during the procedure and have to have a crew there to plug the hole to stop any bleeding out from occuring. Its just too risky and he wont do it. There is really only one thing this could be and only one chemo meds to treat it. He said lets do the chemo and see how I respond, they said they'd get back to him.

A week went by and they called to say they cant do anything cuz they still question it being cancer. So they want him to see liver specialists. What are the liver specialists gonna have to do to get a 100% conclusion to whats going on in there??? Thats right a biopsy. So they are bottlenecking Dan into having to get one done.
He still refuses(and Id refuse to if it were me) and now there will be war. NOT ONE DOCTOR is willing to help get a plan of action going and at least try to help him. We know he's dying if all these drs want to do is nothing then they need to say they cant do anymore and show him numbers for hospice and the like and be done...stop the games we've had enough!!!! My heart cant take much more of this.
I want it to end one way or another...its just becoming too much to bear to watch him ebb away, be depressed and dark, be angry at me and the kids because his reality is warped right now...just too much.

Anywho, so now you are all caught up on that aspect on our lives.

On the fun and happy side....Av has finally decided to potty train and its going excellently!!! Connor finally started school and is loving it!!!! And my sweet Dev turned 4 yesterday and had a nice day!