Monday, August 20, 2007

Fourteen Years

Today is part one of the two day celebration that is our Wedding Anniversary.

Gerry and I were married by a judge on Friday, Aug 20, 1993. Then on Saturday we had a larger 'spiritual', non-religious, ceremony for family and friends.

Fourteen years today. The traditional gift for a 14th anniversary is ivory or an elephant related gift. I got Gerry a refurbished ipod. It's black, but it has white earbuds (almost ivory?)

He's been listening to it all morning - Confessions of an Economic Hitman - during his 5-hour stem cell harvesting session today. I can tell it's wearing him out, but so far he's not suffering the side effects they've mentioned; tingly fingers or nose, nausea.

Our big celebration today will be returning to the hotel and putting Gerry to bed. I'll run out and get him a nice grilled chicken breast or salmon (he's supposed to have protein, but not fatty stuff, during the harvest)

I'm going to see if it's okay if he has a little champagne.

Our nurse today, Ken, turned Gerry onto Duckman - here they are watching it on youtube.

Couple of nuts.

RAINCHESTER
You may have heard about the flooding in Southeast MN. We're a little west of there, but down the street from us a creek overflowed it's banks, so we stopped to take some photos. Gawkers. It was fascinating to see this water running so fast, so hard - fascinating and scary. It's very easy to see how someone could be swept away in an instant.

Today we're supposed to get another 3 inches here in Rochester.

It feels like it's happening on another planet, we're so engrossed in Gerry's own drama.

During a break in the rain we went out to pick up dinner last night, but as soon as we hit the highway the deluge started. So hard, so fast, this is NOT the kind of rain that's needed down here... It's not good for anything.

This is either a car ahead of us, or two VERY angry Mooses.

VICTORY GARDEN

I really love vegetables as landscaping.

I remember about 20 years ago when I first saw cabbages used in front of hotels in Philadelphia for decoration.

And I really loved the uncle in the movie, Withnail & I, who wore radishes on his lapel like a boutonniere.

So ladies and knitters, I bring you the Minnesota version of yard beautification, Veg-scaping.

Extra Musical Note:
As we were leaving the Gonda building, the music of choice today was "Seasons in the Sun" Seriously.

I walked all the way to the car and had the walker and our various bags half packed up before I realized what I was humming. Now we're back home and Gerry's been asleep for a few hours, he'll sleep all night and tomorrow at 8:00 we're back to the aphasis machine!

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Wednesday, June 13, 2007

730

We heard the news today that we didn't want to hear (oh boy)

Although Dr. Costas at Mayo did say that sometimes folks with Multiple Myeloma go on for long periods of time, it's not common. He wasn't hopeless or pessimistic, but realistic. We appreciate this - we've not based our marriage on false hopes, we're pretty honest with each other. It seems this is the best way to continue - hopeful but realistic.

We were told what the doctor at U of M told us - but the blow seemed softer somehow. Probably because we had heard it before and we were waiting for it. I recorded it on my iPod, but I think I screwed it up. Damn.

Dr. Costas was frank. He said the time frame we're looking at is a couple of years.
Me: A couple of years?
DC: A couple.
Me: As in - two?
DC: Yes, two.
Gerry seems as if he hasn't 100% absorbed this. Sweet JC, I haven't either. Who could?

I'm clinging to numbers, math, things that can be quantified. It was stressed to us that everyone is different, every scenario unique. All they can tell us are the averages.

My mind is filled with numbers and math;

Max is 9 and Hannah is 10.
730 days.
17,520 hours.
24 months.
We've had 15 years together
Married August 21.
Gerry was born 54 days before my brother, Jim.
Mom's birthday was May 24.

Useless numbers.

Since our appointment with the
social worker is tomorrow morning, we decided to drive home and save the $$ on the hotel. More numbers. We leave at 7:30. Home, if lucky, by 1:00 ish.

We did stop on the way and had a very good dinner - 1 down, 729 to go? Don't you DARE tell me not to go there - How can my mind NOT go there. I won't dwell there, but I can't help but peek inside, and don't try to stop me. You're not the boss of me. So there.

It was a long and quiet ride home to get the kids, and thank our friend who'd watched them for us. Thank you Jane, thank you Cora - thank you so much!

This has come on very quickly - as you know - and Gerry's in stage 3. That was news to me, but Gerry seemed aware of it. He's better read on this than I am. 3 is worse than 1.

Mayo wants to do the stem cell transplant sooner rather than later (he's responding very well to his medication - yay - and they said there's nothing really to be gained by waiting 3 months) so it may begin to happen as soon as end of July / beg of Aug. They're worried about the Zometa's effects on his kidneys' so they're stopping that.

And - the day after he finished a few sessions at the dentist - we're told that going to the dentist while on Zometa probably isn't the best idea due to a not-nice but unusual side effect.

Mayo will try to arrange it so that Gerry's worst phase - when he really needs 24/7 care after the high dose chemo and I need to focus entirely on HIM - will coincide when the kids are in NJ for 10 days.

I need to book those flights.

More numbers.

I'm numb with numbers.

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Monday, June 11, 2007

Okay... So I'll Ask -

UPDATE

We just got the word that the Mayo Clinic can see us tomorrow. As in Wednesday. We're squaring away babysitting for the kids tomorrow, hopefully we can make that come together.

Worse comes to worse, we can take them with us (but I have a feeling this will be another on of "The Talks" and it's best that Dad & Mom have the car ride home to collect themselves before seeing the kids again...)

The, perhaps, more testing on Thurs & Fri (& Sat?) to determine if/when the stem cell transplant should happen (2-3 months is the estimate) In case of more testing we'll probably get a hotel room for Gerry so I can return home and be with the kids those nights. If only I could split in two.

The general consensus from your incredibly kind emails and posts is that I should ask for help when I need it.

PJ said it best in her comment on my last post:

...make a list of all the things that need doing that are getting in the way right now - meal planning, grocery shopping, car pooling, you know - all the crap. Then enlist friends, community, knitters at the LYS, support groups of any kind and ask them for help.

I have learned the hard way that the asking for help is the hardest thing to do, but that people are so thankful to be asked, given a task, made to feel helpful in what turns out to be a small way for them and a huge relief for you.

It works best if there is one person to coordinate all the helpers and then all you have to do is ask that one time.
As you know, we're new here in the Twin Cities. Folks are great - everyone here has been very kind - but I know you know what I mean when I say there's a certain familiarity one feels they should have before asking for a ride somewhere, or if someone knows of a babysitter (or might babysit themselves...) or could drop off dinner while I'm out of town teaching. Asking is so hard.

The social worker at the University of MN gave us information about a website, lots a helping hands, which coordinates helpers, and after a few false starts I've actually been able to log on and establish a website.

The idea is that as the caretaker for a person with cancer, I'm allowed to establish a private web page where I can post things that our family needs done (rides, meals, babysitting).


We will slowly start developing a group of volunteers who live near us and want to help out in some way. I think it will make coordinating the help that we'll need MUCH easier - and makes asking less uncomfortable.

I'm hoping that it will be a tremendous resource. I don't have a lot of folks to add right now - I have a buttload of friends in cyber space, but not a lot of flesh-and-blood friends in the area. I'm thinking before I actually add someone to my volunteer list I should at least meet them in person (make sure there are no axe murderers lurking - yeah, right...)

If this sort of thing interests you, and you live near-by-ish, drop me a line and perhaps we can get together at a knitting meetup or stitch and bitch. I actually haven't been to any in town since we've moved here, and I'd LOVE to go to one or eight, so let me know where you meet and I'll try to come by and say "Hi!" Perhaps that will allow us to develop an in-person friendship and I can add you to the list of volunteers.

Those of you who don't live nearby - your support and friendship is so needed and so appreciated. It's hard for me to express how grateful I am, knowing I can come to my blog and write about a crappy day, and get a few very nice responses that make me feel less alone.

You have no idea how many times I've edited and re-written this post. Such a flagrant appeal for help is rough to do. As much as you guys think good thoughts for me, I think the same thoughts for all of you.

My great hope for you is that you don't find yourselves in this position.
Or, if you do, that you have the kind of on-line support system that you're all providing to me.

Thank you!

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Tuesday, May 29, 2007

Man Proposes

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...

S.S.
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.

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Red Carpet Convertible
Gerry's Multiple Myeloma Expenses Fund


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Snail Mail:
Annie Modesitt / Landy
1043 Grand Ave
PO Box 117
St. Paul, MN 55105




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