What a sad heading right?, Sorry, but this is not to break the hope that you you may all have for the treatments, MO told us on a personal level- that my father is really in the 5% unclucky ones where nothing works!
So after these Lu-177 cycles (second time) Platelet and TLC count reduced drastically and PSA started rising well in 7th or 8th week of treatment. PET scan after 2 cycles showed disease progression, he walked with a lot of difficulty, increasingly became weak, had falls and severe pain
Although considered unfit for Zytiga (due to a heart condition) he was put on Zytiga and in 4 or 5 days, he had blood clots in his urine - really painful episode, he had to go in for an emergency TURP surgical procedure at a platelet count of mere 45K.
After it, he tried his best to walk , succeeded a little but then after one week he became immobile and totally bedridden. He just sleeps all through, unable to eat or talk properly, low blood counts (due to bone marrow involvement and affected by Lu-177 toxicity too) and hallucinates too. He had a seizure and passed off for a brief moment a few days back- was very scary.
He has refused Zytiga, saying he cannot tolerate the side effects, doctors have put him on Honovan and say if at all (which they seem to be saying is less likely) his general condition improves- they could restart him on zytiga, book him for actinium infusions or cabazitaxel.
So it is really painful for my father himself and us seeing him go through this every single day. My mom and dad are fighting this huge everyday battle.
I am not sure, if it will be ok to wean him off all medicines or keep on dosing him for his misery to prolong- he sure isn't in a position to decide right now and from when he was a little well he always had put in all efforts- TO LIVE.
Any words- anyone- any hope??
Bless you all.
Om
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Summm
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I think this disease is particularly cruel because of hope. We all hope every treatment will put our loved one in that magical long-lived group, and we know that group exists, but some will not respond, no matter the path. It's the "good cancer."
I don't know your dad's path. I do know that he and your mom need support to get through this. We are taught to fight fight fight cancer, and that fighting always has a purpose, but sometimes accepting *is* the fight.
Hugs to you, and tons of good thoughts going out to your family.
Thanks much. I agree - accepting is tougher part of the fight. Also- 'accepting' fills me with a guilt that we have surrendered to the disease and that is making him surrender too- since dad isnt in a position to decide much... our actions lead him into whatever lies ahead. It is a big responsibility.
Lots of love, light and healing to you and your loved one.... much happiness ahead.
I have had to live with these burdens and they are not easy ones. My dad died of lung cancer and chose to be comfortable in the end. His best friend screamed at us that we were killing him with morphine. It did not help the situation. The choices get infinitely harder as cancer progresses and all you can do is make the best decision you know how and turn the rest over (to God, the universe, whatever).
It's OK to be tired. It's OK to make decisions that you're not totally sure your father would want. That's just how this thing goes. No one is ever 100% sure or happy about things. It would be nice to think that families and friends are all sweetness and light at this stage, but both the best and worst in humans comes out in the face of death. Your dad may not want to give up because he thinks he's letting YOU down. I'm sure your mom is terrified.
When I have been in those situations, I keep one thought in my mind: I didn't make this universe the way it is. I suppose that's blaming God, but what else can you do? Dying is cruel and messy, and if there's a higher purpose to it all, we won't know it in this life. We just have to get through as best we can, with the choices we make in the moment.
Leaving you with my favorite quote.
He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.
thanks CantChoose for your meaningful words... much needed!
Sorry for what you went through with your father and now again.
Hoping for a guiding inner voice or messages from the universe ( just like i read yours) to make decisions and this journey easy for my father and less scary for my mother and us.
Read your post 3 times over... much love and blessings your way.
Being a strong believer of Karma, when i look at it on the outside... it all makes sense, his journey, his planned path and how he changed it with sanchit karmas (may be it had to be worse)- i know there are reasonings of a higher order. The moment i recognize the bonds is where pain and fear set in.
I think the words we choose about cancer shape our understanding. The "battle" metaphor may be subtly counterproductive. Words like "surrender" suggests the cancer "combatant" is a loser. It is a disease - a fatal one sometimes. Your father is not a soldier in a war, and there is nothing brave in taking medicines to slow it, or choosing not to. There is no right or wrong about it. It's just the decision that we make about how we want to live our lives and our deaths.
Thanks for writing in. I always look forward to your posts and replies.
In this journey of more than 2 years with the disease, it is this moment which is leaving me, my siblings and mom in a dilemma and begin to affect our understanding too. My father has been very hopeful with each and every line of treatment given to him and so were we. Surrender for me is a fear of not doing enough as a daughter- what if there is still hope- who knows- i want to believe there is HOPE.
I definitely do need to accept there are no rights or wrongs. I just wish he was in a position to make decision about his life ( which he is not is making the choice tougher) it isnt easy to decide for another soul, more so when its your fathers.
TA. Thank you, I'm glad to hear someone else not describe it as a battle. Among other words, i prefer the word journey or experience. I've learned so much in dealing with this and become a different, more tolerable person. I feel like it has changed me more into the person I should have been years ago.
It is so difficult to be at the point in life between what can be done medically, and what still happens and matters in the end. This documentary film "Being Mortal", based on the book Being Mortal, Medicine and What Matters in the End, by Atul Gawande might be useful as your family continues to have these conversations.
Well if you're Hindu then place you head at your father's feet and pray that he knows that these decisions are not yours or your families decisions, they are God's decisions. My only solace for you is when my brother was dying of cancer he went into a semi-coma and when he awoke he said "He was almost there, and that it wasn't so bad". We never discussed where "there" was and he died a few hours later. When I write this I tear up and then think about your poor DAD and what he and his family are going through. You are a wonderful daughter that is going through a trying time but time heals all wounds but always leaves a scar. I wish you and your family spiritual guidance and wisdom from the Geeta.
Your post left me teary John! Thanks for sharing. Sorry you and your brother had to go through this. I guess the brief coming back of your brother was to comfort you all a little.
The 'times' are certainly testing- im sure the same 'Time' is eventually going to make up for it too.
Holy Geeta has been 'THE GO TO' in every situtaion for my dad and us all. Thanks for this subtle reminder and your words.
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