Today was rough. We met with a doctor and social worker at the U of M’s Bone Marrow Treatment Clinic, they discussed treatment options (really, only one option) and their words reinforced what we’d read – but not really digested – before.
The average survival is more than 3 years after the disorder is diagnosed, but survival time varies widely depending on the features at the time of diagnosis and the response to treatment. …
Because multiple myeloma is ultimately fatal, people with multiple myeloma are likely to benefit from discussions of end-of-life care that involve their doctors and appropriate family and friends. Points for discussion may include advance directives (see Legal and Ethical Issues: Advance Directives), the use of feeding tubes, and pain relief (see Death and Dying: Choosing Treatment Options).
I took notes today – I know I did – but when I look at them I find them completely confusing. I need a translator to read my notes.
It’s like in college when I took my zoology notes in French – which I was failing – in the vain hope that I’d improve in both classes. I didn’t.
The doctor we spoke with was very nice, if soft spoken. I wish I could have heard what she was saying better.
It seems so inelegant to keep saying, “Huh?!” when someone is telling you that the love of your life has incurable cancer. She did her best, we definitely had some kind of a delayed reaction to her words.
Huh? Wha? Excuse me?
The whole thing was very surreal. I noticed a sign in the elevator explaining that translators would be available for patients and family members. I wonder if I can get a medical-to-English translator?
So – on to the good news. Hmmm, what IS the good news…? [sound of crickets]
Well, Gerry’s young, and he’s pretty healthy (except for this Multiple Myeloma garbage) so he should respond well to treatment.
It seems that sometime in September they’ll remove stem cells – they need to get at least 2 million, 5 million is what they’re looking for. (A million cells here, a million cells there, and pretty soon we’re talking about a mess o’cells.)
This is where I get foggy.
I seem to recall something about removing the cells, giving Gerry some high dose chemo and then putting the cells back IN the bone to rebuild the marrow that they’ve destroyed with the chemo. Of course, they’re aiming to destroy the plasma cells, destroying the marrow is just a little extra touch.
And this is how they’ll rid Gerry of the cells causing the myeloma – the bad guys. (If we don’t fight them over there… well, you know how that ends. At least we can say with full honesty that THEY attacked Gerry.)
When all of this is done, the “life extension” (which sounds like something that bald men order from late-night TV) would be from 3-5 years. We’re both still wrapping our minds around this.
T h r e e – t o – F i v e.
How much extra can we get for good behavior?
In our current medical climate, 3-5 years is a long time. Of course, not as long as it would be if we had a prez who actually believed in stem cell research, but a lot can happen in 3-5 years.
Right? Tell me I’m right.
Apparently there are two markers which portend a person’s chance of getting this illness, and our Gerry has both. Always the overachiever. According to the doctor, this would put him in the shorter end of the 3-5 year scale. A lot can happen in 3 years, right? Right?
We both gulped hard – we were very adult – we didn’t cry (at that moment) and Gerry was amazing with his stack of test results and envelope of paperwork. Later at home he asked me if he seemed obsessed with his manilla envelope – not really.
Manilla envelope = vague sense of control over this thing.
I have a database, he has a manilla envelope – each of us clings to our own coping mechanism.
Of course, just before we left we discovered that our insurance doesn’t want Gerry to go to U of M for treatment. They prefer the Mayo Clinic. I don’t know WHAT we prefer – but I am looking forward to meeting with the Mayo folks and getting a second – perhaps clearer? – opinion. How clear they can be when so much is in question is not – clear.
I have to say that this whole thing sucks. Sucks for Gerry, sucks for all of us. We’re ready for that metaphysical infusion of wisdom and clarity, Mr. DeMille…
We’re dragging the manilla envelope plus every family document we’ve acquired in our 15 years of marriage down to Social Security tomorrow when we go to convince them that yes, he is sick and cannot work.
There’s a 6 month waiting period from application date until disability payments begin – ch and ching – so the drunken sailor spending will have to stop. Actually, we’re spending like a very sober sailor, I’m being facetious. The small extravagances aside, we’re a frugal lot.
I think I scooted into “dealing with it mode” with alarming speed. Hmm, maybe THIS is my coping mechanism? Or perhaps I’m kind of in denial, but in my heart of hearts I feel that Gerry’s going to be in the 10% that makes a good, full, longer-than-five-years recovery.
And you know I’m never wrong about these things.
Immediately I began making plans for turning our upstairs office into a faux guest room, making space in the basement for another sofa bed in case we need it, and seriously doubting the sanity of adding a bathroom when we may need the money for – well – getting through this.
I wish we had unlimited money – don’t we all? – so I could just take time off and be with Gerry. I’m doing quite a bit of that this summer, but bills are bills. Ours aren’t going to stop any time soon. The last thing I want to do is cancel teaching dates, but looking at my Fall teaching schedule I’m getting a little scared about being able to be with Gerry when he needs me. We were told by the Social Worker that now is the time rely on friends and family in the area.
This is the point I broke down sobbing in the office. (No, not when they told me that the worst case scenario is that Gerry is looking at 3-5, no, I cried because we’ll have to get help. Lovely.)
And what a helpful thing bursting into tears is – if only I had been alone in the car.
Coming on the tail end of our solo Memorial Day Weekend, we’re feeling rather isolated. How Little House on the Prairie of us.
KNITTING et al
Part of me is happy to be going to TNNA on Thurs. I’ll see a lot of friends, teach some classes – work is good for occupying the obsessive part of the brain, and do some schmoozing. I’d put aside the idea of trying to pitch a book to anyone there – I’d been playing with the idea of self publishing a color book.
But now all I can think is that I need – really need – to find some large scale project I can do here at home without a lot of travel, yet still make enough for mortgage. Something good will fall in front of me (which is why it’s a good idea to stop the insane crying before I hit it with my PT cruiser.)
Another part of me is afraid I won’t be able to face ANYONE without bursting into tears. Or vice versa. This has been known to significantly reduce the enjoyment of a class, so I promise not to do that. They have wonderful drugs for that now.
But I can’t promise that I won’t have a lot of “bathroom time” during the weekend. My own little porcelain, tile & chrome oasis. I should probably think about renting a car just to have something to sit in & bawl.
I think I may be avoiding some of the parties. On the other hand, can you say, “Open Bar?”
Wish us luck tomorrow with the bureaucrats – another language I never mastered.