Posts Tagged With: tragedy

Of the Culprit and the Cure

your prayers and kind words have meant much to us this past week. our faith is strengthened and our minds put at ease when we learn we’re being prayed for by so many. and the comfort food delivered to our door has not only kept us fed, but has served as a daily reminder of the community of which we’re apart. we feel less alone as we sit down to a meal that has been prepared by the hands of others. so thank you. your kindness contributes to any peace we might have through this time.

 

difficult days. hard news…and then again.

 

i feel that jen and i and our boys have grieved well the loss of grandpa bruce. we are sad, but at peace. for we deeply believe he’s alive and well in a dimension unseen by us, but no less real than the flesh and blood reality that we know so well.

 

and of this flesh and blood reality…

 

it seems that my bone marrow has stopped working. my body is no longer capable of producing the blood i need. a chromosome has gone rogue and changed my marrow from what would be compared to life-giving water to something more like paint-thinner, or saltwater at best; it’s wet, but you can’t drink it.

 

by necessity my care has been transferred from the health partners network at regions hospital to the transplant department at the university of minnesota. they called yesterday to schedule my initial consultation, which is next thursday at noon.

 

because i have not yet had that consultation, there’s only so much i can say with certainty. but i will nonetheless share what i’ve come to understand so far.

 

i have what is called treatment-induced myelodysplastic syndrome, or MDS. it was once known simply as preleukemia, which it is, but that tells only half the story, thus the name-change. it literally means funny-looking bone marrow, which sounds fairly benign. it is not.

 

it would seem that i am in the highest risk category for this turning into an aggressive leukemia. however, even on this side of that, my bone marrow is no longer capable of producing the blood my body needs – white blood cells, red blood cells, and platelets – the whole package. it is barely doing so now, but even that diminished ability is vanishing quickly.

 

it is called treatment-induced because it is most likely a consequence of the aggressive chemotherapy that saved my life six years ago. i received massive amounts – and a broad spectrum – of chemotherapies over the course of a two year time span, and as mentioned, it saved my life.

 

but we were also informed upon finishing nearly five years ago that the longterm consequences of that treatment could be severe. this is that.

 

(this is not to discourage anyone from necessary and curative chemotherapy, as most treatments do not do this…)

 

when i was hospitalized last week, we were hoping for a cancer or something of the sort that would require less of us than what was required years ago.

 

this is not that.

 

what will most likely be required, and what my doctor has already spoken of with us, is a stem-cell (bone-marrow) transplant, preceded by an induction round of chemotherapy very similar to the first month of my cancer treatment years ago.

 

this is hard news.

 

i meet the cut-off age-requirement for such a procedure by 4 and 1/2 years. according to some i am “young and healthy,” but those of you who know me well know how fuzzy that statement is.

 

i will require another’s bone-marrow, as mine is so broken. the closer kin come first, so my brother patrick and my sister mia are receiving DNA testing kits from the U in the mail; for the closer the DNA is to matching mine, the better the odds for a transplant free of complications, the main being graft-verses-host disease, in which my body rejects the incoming marrow and all hell breaks loose in my body.

 

but we don’t want hell. we want heaven. we want it here and now – in this world, in this life – touching my broken body and making me whole. and so we pray.

 

this is all very hard news. our hearts are heavy. it is hard not to be morbid. there is no pre-crisis naivete, as is so common and so divine, as we’ve done half this before, and it was very hard. in fact, when i finished last time, i had decided i would not do it again, if it came to it.

 

but it has come to it, and God help me, i’m going to fight like hell. for there is much life to live.

 

(…and if i’ve offended you, i am sorry. there are very deep emotions in play, and i pray you will understand and give me grace appropriate to the circumstances…i speak this way so rarely…but words can do many things…)

 

blood transfusions will likely be necessary between now and the transplant. they typed me specifically last week, and put me on the blood bank’s short list. so far so good.

 

and no infections, please. i’ve almost no immune system, and bugs subdued in others could be a menace in me. a fever would put me back in the hospital, and my family needs me home right now. we need life to feel as normal as possible, at least for a little while.

 

i’ll have another bone-marrow biopsy in three weeks to confirm what we’ve found so far, and to gauge how rapidly this is progressing. i am thinking it would be good to pray between now and then that this rogue chromosome would change its mind and my counts would return to normal. there’d be no explanation but God and the prayers of his people, and i would have a new lease on life. i’d like that very much.

 

many of you have offered to help somehow. thank you. as we understand more what this next year is going to look like for us, we will think through more specifically how you might enter in and make life possible for us. know that right now, it just feels good to live a nominally normal life. that will likely change.

 

thank you, thank you, thank you for caring, and for being in whatever way “in this” with us. i’ve said this before, but it’s worth saying again: pray and hope, hope and pray. we know that the God who lets us suffer (he does) has suffered Himself (he has) and so we trust him. but we can’t trust him all by ourselves. we need you. so thank you for hoping and praying with us and for us. we are deeply indebted.

 

in his strength and for his glory,

 

jeremy (jen and the boys)

 

btw ~ we may very well start a caring bridge site in the weeks to come. in the meantime, facebook works well, and i will not turn down a friend. so if you want to stay “in the loop,” find and friend me. your presence is appreciated.

 

 

 

 

 

 

 

 

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Categories: Cancer, MDS | Tags: , , , , , , , , , | Leave a comment

Countdown Party Favors

MONDAY April 23

chemocert.jpgI got it. Today I was given one of those purplish certificates from the cancer clinic staff congratulating me on the completion of chemotherapy: infusion number 78 of 78, month 24 of 24.

Only four more weeks to go.

What a ride.

I called a friend of mine today who’s celebrating his thirty-third birthday. He’s also in the midst of putting his life and insides back together in the wake of several bad decisions. He said, “This is the year, man… this is the year we’re both done being sick.”

Yes. Bring it, brother.

Just over a week ago I had to cancel plans again. I was too sick, again. I hurt too much, and was too tired. Again.

I’m tired, too, of being the broken record.

Living like one. Writing like one. Feeling like one.

Just when it sounds like the song is about to break into its climax – into something new and powerful – it skips back to the beginning. The boring part. The part you’ve heard at least a hundred times already. The part you know so well. Too well.

Sometime last week, though, springtime got into my blood. It was like something budded inside me. Again, I had the sensation of a new season. And it was more than just the sunshine.

But the sunshine helped. I got out of the house several days in a row. Went for a few walks by the lakes. Found a new coffee-haunt or two. Used my YMCA ID. Got really wet and came home smelling like chlorine. Four days in a row.

I still felt fatigued when came the weekend. Artificially sustained by buckets of caffeine, rising Sunday morning took me an hour and a half, just to get out of bed. And this was a day I was genuinely excited to get to where I was going. It wasn’t lethargy or reluctance that made waking difficult. It was utter fatigue.

But again, this seems like a new season. Or at least the eve before one.

Like the countdown before lift-off: “T-minus 10, 9, 8, 7…” Much prep goes into that moment, and in the miles immediately following, there is gravity to fight and much fuel spent in the fighting. It is a rather violent segue between earth and space. The separation is not tranquil. But it is the necessary effort to bring the ship and its crew to higher places.

The countdown is steady in my head now. 28 days. One week of prednisone. Three more weeks of chemo pills. One CT scan (I don’t like those – I made a mess of the machine the last time they loaded my veins up with intravenous contrast).

Then I’ll wake up one morning without another chemo treatment looming near. Then I may actually have the juice to do what I need to rebuild my body.

landmarksky.jpgJen and I took a few hours following my infusion to walk around downtown St. Paul in springtimey sunshine. There’d been a few moist eyes at the clinic earlier, but we had stopped crying well before we were strolling the cobblestone sidewalks on Wabasha and West Seventh. So I’m not sure what our excuse could be (I’d say chemo-brain, but that only works for me) but we were in the middle of a crosswalk when we weren’t supposed to be. Suddenly we had to scuffle off the street to avoid being hit by a Volvo, and while scuffling, I pulled a muscle in my butt.

Right cheek, actually.

I’m still limping.

Get that: I pulled a muscle in my butt while scuffling across a street.

At the clinic today, I weighed 132 pounds. Almost my normal weight. My nurse for the past two years rightly quipped, “I’ve never seen those numbers before.”

driving.jpgSo I look good. Good grief, do I look good (please notice the hair on my chin and the tongue in my cheek), but despite all evidences to the contrary (here’s that broken record thing, again), I’m not in great shape. I strain muscles in my back and neck when I sneeze – for crying (or sneezing) out loud. Sitting on lake Calhoun last week, I kicked off my shoes and put bare feet on sun-warmed bricks. A runner jogged by, clomping his tennies on those same bricks. I imagined doing the same and my ankles began to unconsciously, instinctively twitch with the expected pain.

It will be so much fun to be able to do stuff again. And I’m so glad I get to. I’ve been itching to get out. To see things. To do things. To explore with my boys. To romance with my bride. To enjoy common hobbies with my friends.

And for a few days last week, and a few hours this afternoon, I got to.

Those of you who’ve been following my story know why I hesitate to say this:

Life is looking up.

I was intending last week to write this hoorah. Right in the middle of my happy days.

Then the shootings at VT happened. And I learned of Walt Wangerin’s cancer. Closer to home, friends M & S found out that S was going to deliver a stillborn in the sixth month – their second miscarriage. And friends J & A discovered the adoption they thought was a done deal (little J had been living with them for well over a year already) was suddenly very likely to come undone.

Bad Days & Better Days

I wondered how I could pass out party favors to celebrate better days when my better days were happening at the same time as someone else’s very bad days. Would it be irreverent, disrespectful, frivolous, or insensitive for me to say just how good my good days were?

How was I to reconcile the sheer pleasure I intended to describe in an afternoon of sunshine on Lake Calhoun with the simultaneous pain and uncertainty in the lives of some of my closest friends? More broadly, how should we feel when pleasures like frozen custard and Oregon Chai, bike-rides and swimming-pools sit side-by-side (on the globe, anyway) with famine, contaminated water, genocide, and disease?

One time I hurt so badly I couldn’t recall the good times I’d had prior to the pain. The collective cry of suffering in this world at that moment undid me. In July of 2005, my own hurt amplified the hurts of humanity and the darkness invited me to despair. Though the good times eluded my memory, at least I had good times to recall when I could.

If all were pain, sorrow, and frustration all the time, I am convinced humanity would collapse upon itself. When I was sick, others were well. I couldn’t remember my own good times, but I saw others having theirs.

When one grieves, another is laughing. Weddings and funerals, baptisms and bloodbaths happen on the same planet, on the same day.

And while this incongruence often agitates our sense of justice (which it should), I’ve come to see it also as a grace. Good and bad coexist here. It is a grace. The two are juxtaposed, and we always know how bad bad is and how good good can be. And we know the difference. The contrast is necessary.

Doesn’t mean we shouldn’t do all we can to alleviate the pain that is. While the good times (whether ours once or theirs now) give us something to hope for or remember when we hurt (it is so true that in the midst of grief we can forget what life is like without grief), the pains of others serve as another kind of reminder in our peace. And they provide us with an opportunity to make their hurts (and ours collectively) easier to bear.

How good it is we’re not all grieving at the same time! If we all hurt all the time what comfort would there be? What life could we look at and say, “That is right and this is wrong; I want that back. I know that this is so bad because that is so good”? What’s more, who would there be to console us? Who would there be to give – were we all so bent up so as to be incapable of the selfless offering needed to bring healing? Who would there be to serve as the tangible flesh and blood bringers of God’s kindness?

Our exposure to the hurts of others (the shared grief of our planet) keeps those of us who are well from living frivolously. From thoughtlessly embracing pleasure. Now if we enjoy anything, we thoughtfully enjoy it as a gift. And if we prefer triviality to reality, ignoring the suffering in this world (neglecting to do what we can to help) we are all the guiltier of our indifference.

Finally, may the hurt here help us to know not only how badly we need each other, but ultimately how deeply we need God. The brokenness of suffering in life is the evidence of a broken relationship with the Giver and Sustainer of life. We really do need to meet our Maker.

adecloseup.jpgMay the Church remember and reclaim, in each generation, her calling to be the tangible representation of this Lord who brought salvation in so many ways: healing the sick, feeding the hungry, forgiving the sinners, and giving power and purpose to the lives of very ordinary people like you and like me.

Consider this the party favor and the invitation to celebrate with me.

We live still.

Collectively,

His,

Jeremy

PS. New downloadable tune posted sometime this week!

Categories: Cancer | Tags: , , , , , , , , | 2 Comments

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