My father has stage 4 thoracic cancer and his lymph nodes are enlarged, causing fluid to build up in his chest cavity. He has a feeding tube in.
He just battled sepsis, only 20% survive this blood infection ... he beat it.
There is a CURE for his cancer, even in the advanced stage but it will not be available until Jan 2002. It is called C225. It is awaiting FDA approval. 85% of the patients using C225 showed no cancer after treatment. 10% had a 75% reduction in cancer cells.
We have been told we have 2 months. We need 3. I need help ... specifically prayers for him. It is so frustrating to know that the answer is right there ... just out of reach.
Thanks so much. I try to pop in here when I can but I am usually at the hospital.
Gosh, this is the hardest thing I have ever done in my life ....
posted on October 5, 2001 10:23:22 PM
Becky, I'm so very sorry to hear of your fathers illness. I hope you get your miracle. He sounds like a strong man so maybe another month isn't out of the question no matter what the doctor says. Take care of yourself too.
posted on October 6, 2001 03:51:01 AM
I am very sorry.
I personally would be contacting the people directly responsible for delaying the release and inform them that if he dies they do also.
posted on October 6, 2001 03:52:08 AMWhat seem our worst prayers may really be, in God's eyes, our best. Those, I mean, which are least supported by devotional feeling. For these may come from a deeper level than feeling. God sometimes seems to speak to us most intimately when he catches us, as it were, off our guard.
posted on October 6, 2001 05:09:43 AM
MrsC, our prayers & strength to you, your family & to your father {{{{{ Becky }}}}}
Do try pushing for an exemption so that your father can get the new drugs NOW. I have a friend who's son is a hemophiliac and he is on meds that are currently in the "approval" stage, because none of the approved drugs work for him anymore. Contact you local political reps & take it as far up the line as you have to, it CAN be done!!!...If approval is so close, then there MUST be an experimental test going on somewhere where your father should be able to be a part of the study.
posted on October 6, 2001 06:18:13 AM
MrsSantaClaus,
I will be praying for your father and for you and the rest of your family. Rancher24 is correct, political pressure can sometimes open doors for exemptions. You will have nothing to lose and everything to gain. Good luck.
posted on October 6, 2001 06:41:55 AM
MrsSantaClaus
I am so sorry.
I agree with gravid and rancher. If there is hope for a cure, it's worth a good try to knock the bureaucratic sense out of a number of people in order to get treatment started now.
posted on October 6, 2001 06:34:18 PM
The worst thing happened the other day. We had decided not to tell my father that he had been given limited time, especially since he was fighting and in such good spirits. Maybe we would have done differently but he has no skeletons, no loose ends, just a family full of love. A young doctor who only ever saw him once to drain his lungs came in and said, "We could put a drain in for your fluid but it is useless. It will only prolong the inevitable."
When we found him about an hour later he was hysterical and we have probably lost one of the two months we were given. He seems to have aged 20 years overnight.
What right does that doctor have to do that to such a loving person? She destroyed him. I would have typed it yesterday but I have been so heartbroken over the whole thing I cannot even think straight.
Our thoughts have been that whether he had 2 months or 2 years to go, they should be happy and full of laughter and love. That doctor took all of that away in a split second.
Please, make sure you tell those you love how you feel about them. You never know when you could be facing the tragedy that I am.
And, thanks for your prayers. I have been hoping for a miracle but at the same time praying for what is best for him.
My Superman found his kryptonite
Becky
By the way, we are taking him to Pittsburgh Cancer Center on Wednesday. Keep your fingers crossed for us!
posted on October 6, 2001 09:35:40 PM
That is the custom in Japan never to tell someone if they have limited time. Indeed they won't even tell them they have cancer.
When my mother had cancer the family very sternly warned me not to tell my Mother how long they gave her. She asked repeatedly and nobody would give her an honest answer. If I had I would have been shunned and disapproved by the whole clan. Yet I still feel dirty for not being honest with the woman.
posted on October 6, 2001 11:29:54 PMMrsSantaClaus: When my mother was diagnosed with cancer, the doctor called *me* in and told me that it had metasticized to her brain & that she had only a short time to live. I took it upon myself not to tell her. Oh, she knew she had cancer of the lung, but not that it had metasticized & that there was really no hope for her. She had chemo & radiation & thought that she'd get better. For 7 months until her death I lived a lie with her.
And the day she died, when her lungs hemorraged, she'd had no chance to come to terms with her death. She was terrified and I can still remember the sound of her coughing in the living room, hear her cry of "Help!". She coughed up pieces of lung while I called for the paramedics and realized the truth only at that moment.
If I could go back in time I wouldn't do that! I treated my mother like a child. As if she had no right to know what was going on with her very life. Who knows, if she had known the truth there might have been things she'd have wanted to do, to say to her friends and the few relatives we had left. And I deprived her of that. It's not something I am proud or happy about.
Your father had a shock, yes, but with your help--and that of the rest of the family--he will overcome that. Give him the chance to make peace with his life and his death. He's an adult & has the right to know the truth of what's going on so he can do the things he needs and wants to do.
edited to insert an "s"
[ edited by bunnicula on Oct 6, 2001 11:30 PM ]
posted on October 6, 2001 11:32:42 PM
I don't think I'd want to know, and that young doctor was an idiot. Old joke: you know what they call someone who graduates at the bottom of their medical school class? Doctor. Sounds like she's the one.
I am such a believer in the power of positive thought. And a believer in miracles. The cancer centers often use many different approaches, and I sincerely hope your father gets more positive care and treatment there.
posted on October 7, 2001 07:20:51 AM
We had faced this type of situation with him once before, many years ago. This loving man became withdrawn, sullen, and mean. Horribly mean. He remained that way until the day the diagnosis was corrected. Then he became the loving man he is today.
I cannot take back what that doctor said, but I would if I could. We are not in denial, as one of the doctors told us. We are a family who decided to pull together and fight to save our father.
As a vendor to the American Cancer Society who has spoken at length to survivors of this horrible disease, I know that one of the main parts of this battle is the attitude and spirit of the patient. Once that spirit is broken they lose their will to fight.
Dad knows he has cancer, he knows he is gravely ill. He knew it could kill him. Did she have the right to tell him it would? Knowing he could die he has the opportunity to tell everyone what he needs to, and we have all had those conversations with him. In our family, however, we frequently express our feelings to one another about how we feel about each other. The children have been brought up hugging and kissing their aunts and uncles. They come running whenever they see one, and often take flying leaps into their arms. I will always remember my daughter in her first Holy Communion gown, looking like a miniature bride screaming UNCLE DONNY! and running across the banquet room to jump into his arms. The perfect Kodak moment, her in her white gown, he in his truck driver clothes
My father was full of hope. The same man who just a day earlier was smiling and laughing now stares into space, not paying attention to anyone. He has been refusing his feedings at night and telling us he was hooked up all night. He is still nice to his nurses but is now using words I haven't heard from him in many years and I do not know what I face today.
We needed an extra month but I think we lost one of the months that we had.
If you are a smoker, please throw those cancer sticks away. Save your family from this nightmare ... the one you can't wake up from.
posted on October 7, 2001 10:10:02 AM
Becky: I'm sorry about your dad. Maybe you can undo some of the damage that the doctor has done by urging him to fight - that he isn't "prolonging the inevitable" if he can hang on long enough to try this new treatment. Doctors are wrong sometimes with their pronouncements about how long people have left; I have an uncle who was told he had six weeks left - that was 32 years ago.
I know several people who have had similar experiences and they are all still around after 15+ years. If your dad gives up now, it sounds like he has no chance of making it; he has nothing to lose by fighting, only everything to gain.
I hope he does not spend what little time he may have left by being withdrawn - it would be an awful waste. Good wishes to all of you!
posted on October 7, 2001 04:36:28 PM
Becky, I hope that the Pittsburg Cancer Center can offer your father some hope.
When my father was discharged from the hospital this spring, he went into the hospice program with the feeling that his death was imminent. He had become so emaciated and no longer qualified for the experimental treatment we hoped would help him. He alternated between seeming to accept the inevitablity of death and being angry and withdrawn. For a couple weeks after he went home, he refused to eat and further wasted away. Finally another nurse told my sister about an appetite stimulant (megase?) that worked like a miracle - the day he took it, he asked for Chinese food. His appetite has remained strong - he gained 12 pounds - and after a pharmacy error was caught, he became a little more active but he's only been out of the house perhaps five times in as many months.
Don't give up. Maybe after talking to the new doctor, your father will change his attitude. Best wishes to you and your family.
posted on October 7, 2001 04:37:15 PM
I believe that bunnicula has some very wise advice.
Everyone should have the right to know the truth about their medical condition and it should be the responsibility of the doctor to inform the patient of the disease prognosis... but not in the offhand and callous manner that the doctor informed your dad.
I hope that he will receive better emotional and medical treatment at the cancer center.
posted on October 7, 2001 07:42:23 PM
Thanks, everyone, for you kind words ... and especially for your prayers.
Dad came home from the hospital today and is starting to look a bit better. He is just happy to be in his own home ... with his favorite nurse (Mom).
I did manage to get him smiling at me today by teasing him ... and having some of the grandchildren there helps, too.
Unfortunately his tumor is active and it is blocking off his esophagus so he cannot eat. He is, however, on a feeding tube, which helps a little bit. His main problem right now is that the fluid builds up around his lungs. The nurse from Pittsburgh has told us that if they move the feeding tube lower that will stop that problem.
It really is hard to watch someone so intelligent, the rock of our family, suffer so much.
Auctioncow, I am very happy things turned out well for you. I see what chemo and radiation can do to a person. You are lucky to have survived the treatment and the disease.
posted on October 8, 2001 08:47:18 PM
I agree. I was not a fun time and thank you.
My wife was pregnant with our first, and then I get cancer and fight it the entire time. So we were BOTH out of it.
I was one of those fairly young people (young THEN, not now) that got it early. So, I turned into a very angry person towards certain things. I eventually got over it.
I think if it ever came back today, being older, I would be more in despair rather than anger. My sympathies are certainly for your Dad.
Remember, Dad's like sticking around for everything. Granddad's even more so. So the main fear is not being around to enjoy everyone. I thank god for my children, now on our FOURTH, even with therapy.
Yea, I am rambling. Your message touched home, and makes me think back. Humor is the best medicine.
He seems to have aged 20 years overnight.