How to deal with the unknown and "what ifs"

[Dina]

What a month this has been. My Dad has been in the hospital since the 1st.

He woke up that day and could not get out of bed...off to the hospital we go. They did a bone scan to find his cancer has spread to his bones making its home in his spine. We also received the path report from a chest mass he had removed on March 19th - Cancer of an unknown primary. It was some type of "mucus" mass - so they assume it is in the GI tract somewhere.

The cancer markers and blood results are showing cancer in the pancreas now too - which MAY be the new primary since it is part of the digestive tract...BUT - no more tests, no more treatments - just comfort care for him. They did 12 radiation treatments to his spine that did not help at all.

So - here we are not knowing....no idea where the new primary is, no idea how bad the bone mets are.

To top it all off - Dad is alergic to Narcotics - the only pain med his body can handle is tylenol. He is in so much pain that he can't even sit up anymore.

Dad still wants to fight - he wants to continue with treatments even though the Dr's have said his chemo did not work. His Dr's said if we find out where all the Cancer is - it won't change the outcome. Dad does not understand that he can not be "blind" treated.

I am still in the denial stage - the "what ifs" are eating me alive. What if the cancer can be treated?? What if they are wrong??

I am being selfish - I want more tests!!! I want to know - how the hell do I deal with all the unknowns? No offense to anyone - I do not have my faith to turn to - my faith failed me many, many years ago.

[peebygeeby]

Hi Dina,

I understand how you're feeling. When I was dealing with my Dad's failing health a couple of years ago, it simply was not acceptable that the doctor's could'nt find a way to help him. He had neck cancer. He was treated by some very fine medical professionals, but they could'nt find a way to fix it.

I hope that this will not be the case with your Dad, I hope that they will find a way.

Please keep in mind that all you can do is do the best YOU can do. The rest is out of your hands.

I wish you all the best.

Gail

[fillise]

Dina,

It is so hard to know what is right for our loved ones. If you Dad still wants to fight then maybe he can get a second opinion. Sometimes one doctor will try a treatment when another won't.

I'll keep him (and you) in my prayers. In the meantime, we are here if you need us.

Susan

[missyk]

I agree that if your dad is determined to try *something* he might as well find someone who's determined to find a *something* that works for him. I equated my mom finding the right dr as finding a person who, if someone had a knife to her throat, would be willing to step in between her and that person. It's no different. They're fighting for their lives and you WANT someone who's willing to fight just as hard as you are.

Don't be afraid to ask the dr he's working with if HE can refer you to someone else who might have some insight into something to try. The dr's (usually) tend to know some people and are more than willing to give you names if you ask. Mom even found someone willing to cut her grape (head) open to try to cut the cancer out when all the SRS failed. So anything is possible if you're determined.

And I get ya on the faith issue. I had a time, myself, when "faith" wasn't on the top of my list of places to turn because of some long-standing issues with "The Big Man". There's no offense taken by any of us, I'm sure.

[jendew]

My dad didn't give up easily either. In fact, when he was on hospice we were waiting for the first shipment of Tarceva to come in. It came the day after he died. It's perfectly normal and natural to want to fight. I'm glad my Daddy never gave up hope. I'll be praying for your family.

[amieb]

I'm glad your father is fighting. I can appreciate that and am in constant amazment at the tenacity of cancer patients.

The bothersome thing in your post is that the only pain med they have him on is Tylenol. If I've learned nothing else in the caregiving of my father, it's that the pain in the evil and it must be beaten out. There are 7 ways to combat pain and opiates are only one of them. And there are pills for everything. I would talk with a pain management person about different options. If they still give you the run around ask to talk to someone in hospice. I know your father isn't there yet, but they have the best ideas about keeping people out of pain and they have seen every variation out there.

I'm so sorry you are going through this. You are in our thoughts and prayers. Keep your chin up and love every day you have iwth your father. They are gifts.