bbfranson
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Michele,
I hope you feel our love and support and prayers. We feel so much for you, right now.
Truly, God Bless,
BrendaYa’ know, I’ve always wanted a coconut bikini. Would you mind picking me up some?:cool:
God Bless,
Brenda
That’s awesome news!!!!! They wouldn’t even consider you for transplant if they weren’t shooting for an all out cure.
We are at the University of Utah which is mimicking the Mayo’s transplant protocol for CCa. It entails chemo, radiation, and then the transplant. They have raised the success rates from 20% survival to 80% at 5 years with this and those are the best statistics we have found out there.
No, it’s not been a great party, but is there anything about this that is?
Keep us posted and God bless,
Brenda
Our dr has never heard of it happening, but Scott swears he can’t taste anything but dark chocolate since they put in the biliary drain. It happened once before with a stent that had slipped into the small bowel. He was a skinny man already and has lost 20 lbs.
I will buy and/or make anything he wants. When he can’t eat, but knows he should, he drinks carnation instant breakfast. He also likes pina colada and strawberry daquiri drink mix in ginger ale, and fruit smoothies.
He cannot eat big or heavy meals. He has lost a lot of his favorite foods from when he had radiation last July/August and was so nauseated. I would be desperate for him to eat anything…… anything he threw up, he can’t eat again.
Something that has helped his appetite drastically has been the marinol. It is a marijuana derivative that gives him the munchies like crazy. It’s costly, but worth it.
Brenda
I’m thinking you need more support and more information. Is there a hospice organization nearby? Even if it is not his time to go, they can give invaluable support to you while he is in the hospital. “I need to know he’s not going to be afraid or in pain. ” These are the people most able to help with this, and make sure he is comfortable. Hospitals don’t necessarily worry about comfort, you need someone that knows the options and can advocate for his comfort.
My only personal experience with them was when my grandmother passed away; they were wonderful. They worked with the dr for us, eliminating dr visits and a massive amount of stress. They had standing orders for pain, skin and bowel issues; sent aides to help with her care. They helped us be ok with not pursuing ongoing, aggressive, medical treatment.
This is such a sensitive issue. It’s quite likely I am clueless; I don’t wish to upset or offend anyone, but if this is where you are at, you need more support right now.
Prayers and more prayers,
BrendaPerhaps we do need our own vent site. We have our own, unique issues that are separate from our loved ones: grieving, anger, depression, anxiety, relief, guilt…….not to mention dealing with our loved ones’ grieving, anger, depression, blah, blah, blah……
But, perhaps we need to keep it here and just treat it more matter of factish. These emotions are part of the package. I am going to feel depressed. I am going to feel guilty. It’s natural to feel resentment, anger and grief at loss of personality and life style.
Yes, yes, yes, I have all of those feelings and once I recognize them, I can more effectively deal with them. I can see that the pig mire my head is shoved into is depression. Yes, I’m going to feel snide at the woman complaining on and on and on, that her daughter has diabetes. I have issues. I’m screaming inside and it’s eating my brains to get out. No, I’m not ok, but I am more ok when I recognize my emotions as being predictable, anticipated responses to hellish circumstances.
My point is: this is our journey, too. We are also walking barefoot on red hot coals right alongside our loved ones, but it doesn’t mean our blisters will be in the same places, and they fester if not taken care of properly. This is a support group; it is the right place to deal with these things.
Ok, so I really don’t mean to rant, but it feels good, so I’m just going to keep going.
I’m tired of being strong. I’m tired of shallow encouragements by persons I know have no clue what this is like. I resent that my every waking breath is centered around Scott and his comfort. I miss my husband so much; and yet he’s right here, sleeping beside me. Is there anything I wouldn’t do; anything I wouldn’t give to make it better? And yet, I’m tired……… I’m tired of being perceived as being strong.
Yeah, a bit theatrical sounding, but I do actually feel better having just spewed my guts to total strangers on the internet.
…………….. Wow, I haven’t felt this good for a long time, thanks.
Brenda
Karen,
All of our hearts are breaking. This disease and the treatment is so intense. I know you are going through just as much as his caretaker. My prayers are with you and everyone else on this site.
God Bless,
Brenda
Scott’s taste has been off ever since they put in the biliary drain. Also, the chemo has proven brutal this way.
His dr prescribed marinol. It comes from marijuana and is an appetite stimulant. While it doesn’t make food taste any better, it does make him insatiably munchy and has slowed his weight loss.
Marinol is quite pricey. They said we could purchase some off the street pretty cheap and have him smoke it, but that’s not really an option for us…….. still, something to consider.
God Bless,
BrendaFebruary 18th is so close. You are in my prayers.
Scott turns 42, tomorrow, so we are probably at about the same stage in life. This disease is sobering, to say the least.
God Bless,
BrendaDefinitely there have been changes. I could probably blame them on most anything, but the increase in fatigue, and a dramatic increase in social anxiety have concerned me for years. I didn’t even think about it being the cancer. I wonder how long he’s had it, because it’s been about six years since he started really having anxiety issues.
The biggest change in Scott, I feel, has come from the xeloda; the cancer treatment. It seems to suck the soul right out of the man. I don’t like to leave him alone, and it’s all I can do to convince him to keep breathing.
Brenda
I do not know where you are, but I would recommend finding a facility that is following the Mayo protocol for CC. They use chemo/radiation/transplant and have been having 80% success rate on early stage CC.
We are at the University of Utah. Our dr is William Hutson. His staff can be reached at 801.581.2121. They could send you a copy of the experimental protocol being ran by Dr Jason Schwartz. Any and all information for you at this point will be helpful.
God Bless,
Brenda
