Saturday, September 29, 2012


So its been several months since I updated. First off...Happy Birthday to my Love, he's 50 today!

Several things have happened and Im not sure what all Ive talked about.

Connor has Ulcerative Colitis. His meds are finally working and he is off steroids which is a huge plus. He's still got serious behavioral issues and his counselors believe he has Aspergers plus anxiety and a mood disorder(hence the anger) but the meds for those things havent helped. He's getting meaner, particularly toward Devinn, everyday.

He's in second grade now and loving it and doing quite well. We have his first parent/teacher meeting on the 10th of October.

Avery started Kindergarten and loves it very much. Thats exciting to see. He was using the big toilet well until Connor said something about the water running noise was a monster so now he's back to going on the little toilet with me standing between him and the big toilet...thanks Connor.

Devinn hangs at home with me, he starts next fall. He's really wanting to go but not right now. He is getting more bull-headed and gutsy all the time.

Dans considered terminal still, been given 6 mths, maybe a year if this new treatment helps a bit. This new treatment is called Y90 and it inserts really teeny pellets full of radiation into his liver directly(via the main vein in his thigh). Wont kill it all cuz half his liver is tumor and its heading for his gallbladder. BUT it may shrink enough of it to give him a few extra months. Totally sucks all the way around.

We have been back in northern Utah for a year now and have enjoyed it. Its more peaceful here and Im happy for that.

Thats pretty much it for now.


Wednesday, March 7, 2012

Not Much Change

So since I last posted Dans talk of ending it all has become smaller in his mind but still there.
He's swapped oncologists and they still wont do anything cuz he isnt in remission but they believe(thanks to a missing scan...namely the one the old oncologist said she wouldnt give the new dr info on)the cancer isnt active so they will do another PET scan in 3 weeks...sure go ahead blast more deadly radiation into an already weakened body that will help...and go from there.

NOONE but the oncologists seem to understand why this is being done. Why not be proactive and find something to KILL this horror?? His other drs(main and pulminologist) dont get it, they think the oncologists are being dumb too.

We scratch our head and get more confused and more blood and cant really do a damn thing about it.

So, here is what we are left with for now...

*His oxygen levels are so low he's now on oxygen full time with a portable machine. He has bad sleep apnea so he has a CPAP machine as well( as of tomorrow when they bring it).
*The oncologists are not gonna do a thing about his cancer so it gets to do whatever it wants.
*His knees, back, abdomen and head are in constant pain so they will try and get him in to a pain mgmt program.
*He is tired most of the day so sleeps a ton anymore.
*He's got a mucus ball growing in his nose so that isnt helping his oxygen situation. Its now big enough to keep him from getting air up and out of one nostril and the only solution is an operation which is risky due to his enlarged spleen and low platelet counts that could cause major bleedouts. But he may have no choice now.
*He's so depressed anymore he has been given Prozac along with everything else he's on.
*He has a hernia that he just has to deal with cuz nothing can be done about it...just like his enlarged and still growing spleen.
*When has energy only wants to hang with his "bro" and play guitar...screw me and the kids.

And to top all this off our older boy Connor does have Ulcerative Colitis, has been having a blood breakthrough for about a month now and even steroids arent fixing it now so heaven only knows what will happen next to fix this.
PLUS, he's not doing work at school and his anger is getting worse and worse towards us at home.

So now I have to fill out paperwork and get him into mental health for counseling and possibly meds...oh joy!

Anything else wanna go down???


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!