Rosevalley - this is for you!

Well it's Friday and after getting Gemzar on Wednesday I feel ok on Thursday and horrid on Friday. I puked up my coffee and cheese stick and took zofran. I feel awful. Still no word on the tumor markers. It's supposed to be 104 and is beastly hot already at 10am. Pity anyone with no AC. Looks like it will be a wipe out day of laying low. I was up off and on all night with terrible gas, flatus, burping that just lasted several times an hour all night. Felt like I would explode. Miserable. Gemzar comes at a price.

I did have something rather comical happen yesterday morning. I was sitting in the living room when I hear this screeching, screaming howling and just about flew out of my chair. It was hysterical and I knew it was my Siamese mix Emmy and I thought my goodness she has torn her leg off.. something very awful. Well I go in to the Family room to the patio door and she is on the inside poofed out having a hissy fit in epic proportions because there is a HUGE male grey cat with a red collar on the other side of the screen drinking out of her water bowl! Emmy is fiercely territorial and this just rocked her world. The nerve!! My other cat Zoey (old toothless and gimpy) was sitting there wide eyed like tell him Sista!! It was so funny. Good thing they couldn't get at each other it might have been an ugly cat fight. Anyway I had to escort the interloper out the side gate, how he fit through the bars is beyond me. He had to be 16 pounds, obviously a fat beloved friendly pet. No fear all curiosity. Then I let our dog out to further discourage visits... So today Emmy has circled the lot several times and searched the bushes and perimeter.... looking for any signs of the grey one! We have cracked up at how she is behaving! She won't soon forget this episode. Her nick name is Wilma Bird Killer... we try to keep her in our catio (8 x 5 enclosed screened in porch built by DH off a shed, cat tower, multiple perches and landing areas to climb and play, box and water. Emmy loves it out there and will go hang out inside even with the door open. It's her safe haven, there are sleeping pillows and kitty cup. Most of the time she lounges like a leopard hanging off the cat tower Queen of her domain. I know lots of you have cats so thought you might like the story.

((((Rosevalley))))

Rose - I love your cat v. cat story. They are so territorial. Joining you in steaming heat here, I'd promised my 17 year old male persian that he would never get a lion-cut again, but at 100 degrees, he got one last week. He is now fur-ocious. Not really, as I have to carry him to his sandbox when he paws absent mindedly at my chinese rug and not the tile where a little pee won't matter. Sorry your TMs jumped and NV returned. We are rooting for you - August is nearly over. (()) Claire

Gentle hugs (((Rosevalley))) .

I'm sorry that the TMs are up and the N/V is back. I hope you get relief soon. Are the weeks on Gemzar better?

Keeping you in my thoughts and prayers.

Tomorrow we take our youngest to Deaf Church. I really can't believe that I am supporting my DD3 to go to this church. They are evangellical, literal bible interpretation, refuse to marry same sex couples, believe abortion is wrong no matter what the circumstances, are against death with dignity meds for cancer sufferers and are pretty much only for those whose beliefs match theirs. You may be able to marry who you want as the law of the land but not in their house. This is a HUGE church multiple services, hundreds of worshipers, entire blocks donated to medical and job skills, indigent care etc and the price is your soul and allegiance. It's also the only deaf game in town. They are against everything I hold near and dear- I am trying to be open minded but what do I tell my kid? Your relatives and your sisters best friends are going to hell because they are gay/lesbian? Your church says you are not to judge- leave that to God, accept as people but do not encourage? Really? Big of you that kind of attitude will promote family unity. Last service I sat there just speechless. I will die by death with dignity meds unless I die first of something faster. They will tell my kid Mom went to hell? There is a part of me that is amused since I don't believe in hell. There is not much I can accept and endorse with their brand of Christianity.

It is not the "loving all no exceptions" message I got from the New Testament I took in college. Anyway after years in a Quaker Meeting where woman had a voice in the 1600s and slaves were embraced, same sex couples married happily under Meetings and choice and mercy for the dying are sanctified, peace work- it's a real hard pill to swallow this brand of Christianity. Now that I am folded into Buddhism with my back ground I am left speechless. I tell my daughter her choice is her own, but be educated and thoughtful; think hard about what you are accepting. She is a smart kid and will figure it out. I have always believed it best to teach by example. Live what you believe and that will speak volumes more then a lecture. A sense of belonging and meaning and community is strong though, I hope it's worth it. Please no one take offense since I mean none and believe there are many paths up a mountain to the summit. Pick the path that speaks to you and follow it. Everyone has a right to choose.

This is one of the hardest things I have had to do. Thanks for listening to me ramble. You never know where life will lead,

Thank you for your post Stephanie. We have always tried to have a welcoming home, accepting and embracing of differences and cultures. I was feeling like I abandoned all the principals that guided me. Still I know from some of the other deaf folk's comments and asking for clarification that they are more accepting in their views then the church. I do admire the indigent care and free clinics they offer the community here. I think you are right that my DD is seeking some certainty and reassurance when in reality life offers none. Change is constant. Hard to live with that when you are 15 and use a language that the main culture does not. It will work out in the end.

Thank you for your support but this is beginning...to be an awful ride. One break from Gemzar and I am right back where I started. I am so miserable most of the time that I sleep just to get away from it. My shoulder hurts and my abdomen just aches and spasms with waves of gas and bloating. Terrible distention and pain. I ate 2 meals and pulled off fluid and felt awful. I just want to make it through to school starts and then I want to go to that wonderful place where I leave my cancer filled body behind. Peace for me... no more pain and misery. I will miss getting to vote for Hillary but I can't wait for November. The thought of more weeks of this makes me cringe with despair.

Noni I hope this Church changes some of its rigid views. Well I made my goal... September is in sight.

rosevalley I have been keeping up with this thread and I'm so inspired by your strength as you go through this journey. As a fellow stage 4 sister but no as far long as you my mets are small in comparison. I was only diagnosed a year and a half ago with mets but the inspiration from those further along than myself is so helpful

Keep fighting!! sad to read the tumour markers are rising...

I woke up at 3 and spent time losing my dinner. What a way to wake up. After vomiting I managed to get back to sleep. I am tired. I am weary and accept that the cancer has infiltrated my bowels, stomach and gut. The MRI said that while there was no brain involvement there was increased skull mets, increased cervical penetration in the vertebrae and no doubt the aching in my humerus on the left is cancer. I have had it irradiated already. So I have a steady diet of zofran, reglan and oxy. The cancer diet with tea and clear boost. Yum yum. No one cry at my passing it will be a joyful release - a setting free of the spirit. Be free of cancer.... fly on.

Thank you for your support I wouldn't have made it this far with out it. :-) Stephanie that's a really pretty song.

Oh Rose, I sure wish there was something that I could say or do to make you feel better. Like Stephanie has said, you are a great inspiration to all of us and we have grown to love and care about you a lot. I pray for peace for you. We will all walk you to the end.

I pray for peace for you, Rosevalley.

Did you see where the police tried to stop a speeding car (N. Carolina -no mention how fast) and the driver pulled into his driveway got out and was signing to the officer and they shot him dead. He was a married father of 2 and deaf with limited speech. I can just imagine what happened the cop yelled "stay in your car hands up" and the man heard nothing and followed nothing and they killed him. My DD3 wants to learn to drive. She is profoundly deaf, non verbal, no speech. I am making my DH promise me he will make her take a place card that says DEAF KID LEARNING TO DRIVE. I might insist he write it on the windshield, since I won't be here. These kinds of incidents keep me up at night. So many things to wrap up. (((hugs)))

Rose - A dear friend has a son with cerebral palsy. He does not speak much, though his mom can understand him. He communicates mainly through sign language. He does drive and has a sign language only sticker on his back windshield and carries a card explaining things in case he gets stopped. He is in his fifties! He is amazing and I'm so glad to know him.

My mom passed before I started kindergarten. I've always felt her spirit. There have been several times that I felt she communicated important life things to me that I had no way of knowing otherwise. I consider her my 24/7 guardian angel.

Gentle hug to you sweet mama.

Mominator our DD1 is MR/Autistic and Deaf, mild CP. She is also high functioning has a job and activities. She is in a fantastic group home and they are wonderful with her. Good luck with your son's placement I hope he has great success with it. Autism is both a blessing and a curse. It helped my DD1 take her limited cognitive skills and concentrate them on reading and writing, which she does at 3rd/ 4th grade level. Pretty good. I know other DD kids only without the autism, same IQ range, who can't write and read as well. Glad I am not the only Mom up thinking what happens after I am gone.

About 3 or 4 years ago we also got the special citizen registry to give descriptions and photos of non verbal DD adults in our town of 150K. My DD1 was number 5 in their list! She used to wander and thankfully stopped. It gave me a little peace of mind. They started this registry after a really tall young black autistic teen got lost, didn't respond to commands by Portland police and they shot and killed him. I think the young man was only 15 but very tall, adult sized and had never spoken. There was outrage and they started the special citizens registry. My DD1 and DD3 are both deaf and neither talk, ASL only. My youngest is just deaf and can learn to drive but all kids can make mistakes! I will look to see how to get a Nonverbal /ASL only bumper sticker or window decal.

Farmerlucy- thank you for your shared story. I am glad to hear your friend's son is 50 and drives and gets around. It's great to hear that. I worry about my youngest learning to drive. I will try to be her guardian angel and spirit watch. How very sad your Mom died when you were so little. I cherish the time I have had to see my kids grow. When they are babies is special, toddlers... I dearly love 4 year olds. When they are 10 and 11 and are so serious.. then teens are kind of a mixed bag. Then they are in college and fun again. So many different ages to love.