Advices Desired / Needed

[RLDubbya]

Some of you may know that I have a rare terminal cancer of the bone marrow called primary myelofibrosis. This was diagnosed in the summer of '15; I was placed in the "advanced" group based on severity, and given a max of 2-3 years to live.

There have been many troubles along the way. I have applied for Social Security, and was denied, b/c according to them, I'm not really sick. This despite the fact I can't drive b/c I get lost and confused; my cognitive function is low; I have had to be forced into a coma when I bled out and lost 19 units of blood one morning, I fall asleep spontaneously, and I have doctors' documentation for all this. Today, for example, I threw up - a lot.

I am tapped out financially. All my friends except one or two have split, and I am alone with my wife and dog pack. My wife and I have had our problems in the past, as well as dealing with this cancer. However, we seem to be in a decent place, except: I have no money, and I will spend all her money very quickly.

By January we will be homeless if this continues.

I can't bear to do that to her. She is the one person who has treated me with at least some respect and love since our vows in '94. At the same time, I don't have a car to just drive away in, and leaving her like that would shatter her heart.

What can I do?

If I end up homeless, even living in a shelter, this cancer will take my life quickly & painfully when I stop the medication.

Any thoughts?

Oh, to make life interesting for me, I have a second terminal and rare disease, this one is of the connective tissue, and essentially my ligaments and tendons are turning to bone. Again: incurable, and most likely terminal. I've spent something in the neighborhood of $100k in cash fighting to restore my mobility; this will necessitate filing bankruptcy soon.

And I have started to sell off all my worldy possessions, and am faced with not much left.

Does bank robbery work? I'd sell my organs, but they are pretty fubar.

HELP. PLEASE.

 

[T. Erdelyi]

Dude, I'm so sorry to hear about your situation, makes my issues seem minuscule, thanks for puttin' it into perspective for me. I can't offer anything other than an ear to bend and advice if I have any. As far as SSD goes, if you haven't gotten a lawyer to file SSD for you do it immediately as they can do in less than a year what takes most people 2 years to do on their own.

Keepin' you and your's in my thoughts and prayers. One last piece of advice, there's a thread in the Cove called The Semi-Offical Pirate's Cove Injury and Ailment Thread,

Click on the link and stop in and say hello, you know what they say? Misery loves company and there's a lot of miserable bastids postin' there with lots of support and great advice. Remember, you're never alone on Blade Forums.

 

[eisman]

If you haven't reached out to a hospice yet I'd advise you to do so ASAP. They have counseling as well as physical treatment abilities, and can probably suggest help for both you and the wife. The two I used when my mom's cancer came back (one in OH where she lived, and one in WA when I moved her in with me) were amazing.

 

[RLDubbya]

Dude, I'm so sorry to hear about your situation, makes my issues seem minuscule, thanks for puttin' it into perspective for me. I can't offer anything other than an ear to bend and advice if I have any. As far as SSD goes, if you haven't gotten a lawyer to file SSD for you do it immediately as they can do in less than a year what takes most people 2 years to do on their own.

Keepin' you and your's in my thoughts and prayers. One last piece of advice, there's a thread in the Cove called The Semi-Offical Pirate's Cove Injury and Ailment Thread,

Click on the link and stop in and say hello, you know what they say? Misery loves company and there's a lot of miserable bastids postin' there with lots of support and great advice. Remember, you're never alone on Blade Forums.

Yeah, me too. We had a plan we were working; one of the things I had realized was that owning my company specializing in IT management and difficult comm issues was too much; so I was closing that down, and took a position as a CTO for a web host. I had wiped my savings regaining mobility from the one disease; and I succeeded, ended up competing very well in strongman. Lots of first places and podium finishes; ran lots of seminars. The new job was going OK (aside from a maniacal female owner who told me she wanted to run away with me, and forcing me to have meetings in her bed), and my wife and I thought that we were going to end up in good shape. Then I felt tired one day; went to the ER, and they were shocked; my HGB count was 4, and humans are not supposed to be able to live with a count below 7. I was admitted to ICU and the fun started.

Which goes to show: just when I think things are going to be OK, that just means that a higher being is squatting directly overhead, and is just starting to relax his sphincters.

One thing that really has shocked me: all my friends have quit me. In talking with some of the psych staff, this is common in cases involving terminal cancer, and only terminal cancer. Friends suddenly abandon the patient.

In any event: if I don't figure out, mucho pronto, how to get my feces gathered, we are going to be in a world of hurt. And I just don't quite know what to do - which is tearing me to pieces.

 

[RLDubbya]

If you haven't reached out to a hospice yet I'd advise you to do so ASAP. They have counseling as well as physical treatment abilities, and can probably suggest help for both you and the wife. The two I used when my mom's cancer came back (one in OH where she lived, and one in WA when I moved her in with me) were amazing.

I'm working with the palliative care unit at Seidman Cancer Center / University Hospital.

 

[T. Erdelyi]

Those were certainly difficult decisions that had to be made and tougher ones ahead. The thing I've always found out that doing something, anything proactive is better than just waiting. It's better psychologically and physically to be addressing issues you have looming over you. At least you're in some control and the more impact you can have over the eventual outcome.

I can't say I know what you're goin' through because my problems aren't terminal but I have lost many family members and friends to cancer so I've seen a lot of what you're goin' through. One thing I've never done is abandoned family or friends when they were in need. Sometimes just havin' a different ear to bend and bounce stuff off of can be a help, even if it's just gettin' somethin' off your chest. Feel free to contact me if you wanna just talk or maybe hear a bad joke to make you smile a little bit.

I'll keep you in my short and long term prayers and thoughts, smoke up, prayers out.