I don't even know what to think or do right now. Such success in the last year of prostate cancer treatment, even going in to when he's in the hospital now. They did another scan and he still has stable disease from 2 months ago. PSA is still <0.2. Everything was going great, then BAM - last month I start seeing quite a stark decline. Breathlessness, easy bruising, forgetfulness - things that don't quite add up to the prostate cancer picture.
So he's out of breath last night and not doing well, so I call the ambulance. He's at the hospital now and I look at his blood work. I'm just in shock. His white blood count is TEN times that of the high reference range. His platelet count is in the 40's. All other blood indicators are up and down. He has Acute Leukemia. All this time I'm thinking everything is going well and I'm going to have another Christmas with him. Now I don't even know if he's going to make this Christmas. It is so surreal.
I know I haven't made many friends here, but no one else understands just the shit shock of going through all this. Friends, other family, no one I have understand just the emotional roller coaster of seeing a family member go through all this. I can't even imagine what my father is feeling now.
I just needed to vent.
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BarronS
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Sorry to hear about sudden downturn in your Dad's health. Life is so unpredictable and we only have limited power to control the ups and downs of life.
All we can do is to accept the reality and do whatever we can to make it better.
I don't know what more to say. Sending best wishes to you and your father.
Hi BarronS, you were one of the first people I communicated with upon arrival here...haven’t forgotten that (and won’t forget that). Like you I’m here because of my dad. I am so sorry for this turn of events, which sure does seem so unfair... having this happen when your dad has been doing so well. Please know that good thoughts, prayers, and crossed fingers are headed your way...I take an “all of the above” approach at times like this. Just hoping that there will somehow be plenty of people and moments in this journey ahead that strengthen your and your dad’s connection and give you both encouragement.
I’m so sorry to hear of the turn in your father’s health. I’m thinking positive thoughts for both of you ( transfer of merit). Go ahead and vent all you need to and we’ll listen.
Modern medicine is pretty good at keeping people going ( look at all of us ) , let’s hope they can keep him going for a few more Christmas seasons for both of you.
All of us feel your agony , both of you are strong, you can pull through this.
It is a great user name, though I confess much of the time I read it as "what's his name?"
I'm torn whenever a member believes they're entering their final chapter. I want to encourage everybody to fight, but also see the wisdom in not picking fights you can't win.
I’m torn also . Are we to be optimist , realist or pessimist ? . If something like cardio doesn’t get us first APC surely will .. There will be a point that death is relief from suffering . Nobody is going to dodge this bullet . In this we are all the same .
Pain level is bad. Continuous pain killers (morphine)----24 hours.
QOL is not too bad but nothing close to what it was just 6 months back.
My MO (quack) seriously suggested I start on Cow Urine. I retorted that he and his family not just drink gallons of Cow Urine but also eat plates of Cow Dung with it.
And, pray to all the millions of Hindu Gods that India has so prolifically produced
Soooo, obviously, new MO for me Anyways, in 6 months, how many more quacks
You certainly didn't get all of these likes because you think you only have 6 months left. We are all hoping the quacks can come up with something. Best of wishes to you. Monte
6 months my ass... I'll make you a wager.... that you'll be here another 15 years...
See if you're here 15 years and you have to pay me then that means I'll be here for 15 years. I'll bet you a bowl of chocolate chip ice cream (two scoops).... Okay are you on?
If I live for another 15 years with even reasonable "quality of life", I will happily take you out for a triple scoop chocolate chip ice cream. (Haagen Dazs ??)
I am very sorry for what is happening to your Dad. We all know that we could have another cancer in any moment. Most of us are not prepare for the situation. It has to be devastating.
My Dad had several strange health turns during his battle with prostate cancer. He had (treated) heart failure before the cancer was discovered. In order to diagnose cancer in his lymph nodes, they had to take him off his blood thinner to do a biopsy. That led to a clot in his leg which required hospitalization and rehab. Then he fell and broke his femur, which required surgery and rehab. Then he had kidney failure (hospitalization), then bleeding from his bladder (hospitalization), then aspiration pneumonia (hospitalization). You can’t predict this stuff. You can only be there and do your best for him.
VENT! We are here to listen. I know how you feel. I was DX 23 years ago and initial treatment was Bracy and EBRT. In remission for 15 years then BCR. One year later I was DX with CLL. Just had to keep close tabs on it. Never needed treatment. Next was 2 Melanomas. They were cut out and there was no recurrence and now after 23 years I was DX with Multiple Myeloma for which there is no cure. I don't know what the treatment and outlook for AML is but treatment for my MM can give me many more years.
Mike P
As a daughter watching my father struggle with the effects of prostate cancer tx I know that terrible feeling BarronS. Spending days and nights in the icu with him while he fights pneumonia and sepsis.
I do so hope things turn around for you and dad. I also remember thinking I would not make it to the next Christmas. That was over 2 years ago. Best of wishes to you both.
Quoting you "no one else understands just the shit shock of going through all this".
WE DO..... Vent Vent Vent.... all you want... we are here to help and comfort each one of us...... So remember that all of us are in you and your Dad's corner. I wish I had a magic wand.... but since I don't I will keep your Dad's fight in my daily prayers,,,,
Vent all you want! We all understand. It is a tremendous shock.
As his revised treatment plan starts to take shape, this resource could be helpful to him and to you for general familiarization with AML and the "basics" of typical Standard of Care terminology, concepts, treatment options, drug names, etc., before each of his up-coming visits with his AML specialist.
NCCN Guidelines of Patients - Acute Myeloid Leukemia
P.S. I just recently got a diagnosis of recurrent metastatic Spindle Cell Type Melanoma, on top of my 6 year old advanced metastatic prostate cancer. It definitely is a shock and a bummer. It's still one day at a time, though, and one step at a time. In my experience, ruminating about the Past or overly worrying about the Future often just increases my anxiety or suffering. Living as well as possible in the Present, and taking incremental steps in the short term often seem to work out better for me over the long run. Of course, easier said than done, sometimes. That's when sharing the Big Hugs with loved ones and caregivers can provide that little extra something that we all need. Sending "Big Hugs" your way!
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