The increase in uncertainty
Ever since my time with lymphedema began, there have been some nagging uncertainties that recently got more nagging. There have also been some positive developments…rather geeky cool velcro leggings custom measured and able to be put on by anybody without any fainting couches, pearl clutching, frantic denials or suggestions of placing me in a skilled nursing facility.
The only problem with these leggings is that they are not inexpensive and not covered by Medicaid…
I have been uncharacteristically quiet about the following, done more research and gotten some quiet off the record answers that don’t make me happy in one sense…but give me some relief in the other sense because in any medical situation….I just want the effing facts. Right here, right now, right away. Not so I can deny them or act like I can change them, but so I can know how to work through them.
For the last six months because of fear of being sued, or really not knowing, no one has been able to tell me the effect of a rather uniquely unfortunate situation on how this is going to progress.
A lot of folk with lymphedema got it due to breast cancer…a cancer that tangetially got a hold of a lymph node and attacked it…and so ten or so years later the system is weakened, lymphatic fluid is blocked and lymphedema shows up.
When I had Hodgkin’s lymphoma, the last cat scan before chemo showed sixty (count em’ ) sixty nodes as being affected by the cancer. I don’t know what the chemo did to the nodes themselves…thankfully it knocked out the cancer.
When I got the lymphedema, it was explained to me that it is incurable. Treatment can manage it, limit the open skin or infection that can come with it.
If no other causes intervene though, the endgame is congestive heart failure. That’s not a maybe. I do not have congestive heart failure at this time.
So…I asked, um, what does that mean
“You could have two years…you could have twenty.”
Inside my head, I investigated the two colliding facts that seemed to be running around in it taking up a lot of space. One, my lymph notes were *already* beaten up twenty years ago. Not one or two, but many of them. Two, this is a clear signal that my lymphatic system is working poorly. The conclusion I’ve drawn, that I’ve shared with a few medical people, is that I’m unfortunately on the shorter end of that timeline. None of the ones actually responsible for my care will commit to a yes or no answer on this, for fear of being sued, or fear of being right or wrong….but there are some that became good friends during the very early going of this in rehab while I was still in the hospital.
Everyone who knows me knows that I have this unfortunate habit of standing on the last nerve of the worst case scenario…
but these friends of mine, (not anyone currently treating me for anything) when I gave them my “I’m probably on the shorter end of that timeline,” scenario, have looked me straight in the eye and said: “You’re smart.”
So, that’s annoying, this reshuffling about how is my life going to go…
And, there is a new paradigm about, if any of the current folk responsible for looking at my legs see any atypical swelling, anything that looks different fromwhat is ‘normal’ for them now. then it’s “call the doc right away, this could be an infection, go to see him or go to the er…”
Don’t be doing anything *important* because you might have to drop everything if there’s a two centimeter change in the size of your legs…then it’s all earnest medical testing and sudden alteration of whatever you might have planned.
I’m trying to normalize my relationship with food (and eliminate as much salt as is humanly possible) and there are many days I am not sucessful, in part because I’m so completely freaked out about this.
But, unusually for me (*very* unsually) I don’t like talking about this out in the world.
Because it wastes any good times I have during the day.
Obviously that’s time that cannot afford to be wasted.
This is why I need everyone in my life, as I have asked before….to please handle their own freaking *lives* and let me manage this in relative peace, so that when you visit or call I can (at least mentally) mostly be the person you remember, not let the Scary Lymphedema Stuff out of it’s prescribed area of my life, and we can have a good time.
Thank you,
The Management.
A quarter century ago…
This was happening to me. And this is what I think about it, with perspective.
It proves so many things. That a fully fleshed out romantic relationship *is* possible for people with disabilities.
Again, that we’re people first.
That, some of the time, we hold down jobs, run a household, get married, hold off the inlaws…similar in many respects to the able bodied world…but our coping skills and abilities are profoundly different than the able’s.
And sometimes we don’t fcucking cope at all, and the able’s judgement of who we are can just go hang.
And the seemingly contradictory paradox, based on the whole relationship:
That I would never, ever want to go through the insanely rough times that followed after this again, and wouldn’t wish similar cirumstances on my worst enemy. And, frankly would avoid dating anybody, even that mythological perfect man, that was likely to have a long, slow medical nightmare of a downfall. Doesn’t mean I wouldn’t hang in there. Doesn’t mean all persons with disabilities are out of the running. Just that if the likelihood of a long slow downturn in a younger person exists, I’m bloody well not going to throw myself in front of that bullet.
This last sounds almost like a betrayal of others with chronic severe illness. (Separate from disability) I can’t help that.
Also sounds like hypocrisy in a way because I am a cancer survivor, which unfortunately *does* make it more likely to recur than someone who has never had cancer getting it in the first place…
Can’t help that either. Those are my emotional/investiture boundaries now, and I’m sticking to them.
At the same time, with time passing, I wouldn’t have missed a moment of the good stuff, and the bad stuff did teach me some serious life lessons about sacrifice, and duty…and no, not just my own sacrifices…He took a long long road, and eventually learned and practiced adult sacrifice as well, before he himself was sacrificed.
Public Option Part II: Do you wish he was dead?
Dear Congress:
I’ve written about him here. He’s an early middle age working class guy. He’s been trying to work off a mountain of debt, but like Sisyphus pushing the rock, he never quite did…He has a wife (also not employed right now) and a dog. Up until December he had a job.
(Guess that unlike super rich Wall Streeters his employer was not too big to fail.)
Shortly afterward (33 days I think) he was diagnosed with throat cancer. He was uninsured. Somehow…he got the treatment he needed at a Bigshot Reasearch Hospital, which parenthetically, was the same hospital that treated me for cancer and saved my life back in 1991.
Because of that, I was brimming with positive when I spoke to him. They’d saved me, they would save him.
No doubt.
And they did. He’s recovering now. I couldn’t be happier.
He got his first bill this week for the twelve weeks of inpatient radiation.
75,000.00
He just looked at it and laughed. You have to when you get a bill that big.
What the hell else can you do?
And who loses? He does because a bankruptcy just went through on earlier bills, so this one cannot go on it.
The Bigshot Teaching Hospital also loses because instead of being reimbursed for less than they’d like to be…they get nothing. Nada. Not a Dime.
If he’d had a Public Option he could have been subsidized under…
the teaching hospital would have gotten *some* reimbursement for his care.
What would the opponents of health care reform have done, I wonder…said, “Make him go away?”
I suppose I should be glad there isn’t a “Futile Care,” law in his state yet…
Something to do…
It always helps in the trenches of living with cancer…to have a goal for still being here, a purpose….I don’t think I’d still be here if I hadn’t had the driven mantra of “I have to get better before he (the late husband) gets worse.”
Well, Senator Edward M. Kennedy certainly believes he’s got something to do…a purpose to accomplish, the goal of real healthcare reform…and his cancer is levels of magnitude more lethal than my Hodgkins Lymphoma ever was….
Here’s his column about healthcare from the Boston Globe…and he notes that a public option would be part of his plan.
The fourth element of his setup is of particular interest, but you really need to read the whole thing….
Fourth, we’ll make it possible for the elderly and disabled to live at home and function independently. Our bill will help them afford to put ramps in their homes, pay someone to check in on them regularly, or any of an array of supports that will enable them to stay in their communities instead of in nursing homes.
And, like any other patient meant to cost the for profit insurers any money…. (I’m going to sound truly evil here, but I’ve spent time in the private insurance maze…)
I’d imagine there’s been some private discussion in some office somewhere…
Of trying to wait the Senator out.
Waiting until his voice on healthcare is only a legacy, and not a living breathing fighting legislator, negotiator, orator and cancer patient.
Will all of you, corporate and legislative, lined up to protect *money*…. will you actually sleep well at night if you’re able to gut this idea into ineffectuality? Will your consciences stay silent if you stall the process all together? Will you, privately, of course….
Express *relief* if heathcare reform is stalled all together past the lifespan of Senator Kennedy?
It makes me sick to think about.
Do the righteous thing….One Time. Lay down your cost/benefit analyses, your cost avoidance strategies, your quota of appeal denials per month.
Just *ucking drop them!
Suck it up, pass healthcare reform, and go to bed….
You can wake up the next day and find a new money hoarding scheme that doesn’t intersect lethally with the well-being of our citizens.
I’m bemused…
Into politics for a minute:
Arlen Specter is now … a conservative … Democrat?
If I was able to stand, I’d have fallen over after reading this. If I could drink alchohol I’d be heading to a bar to have a margarita (due to crazed astonishment.)
Wow. Just Wow.
Not to be a cynic, but I think expediency has to do with this…He knows he’d lose in a Republican primary after recent votes….
But honestly? I think there is at least a partial personal side to this:
If he’s survived cancer, he has had at least a tiny window into real pain…
The present GOP scoffs at suffering, and maybe he just can’t.
But then again there’s McCain: Tortured, and in there pitching for the GOP.
Midlife And Treachery 
