Posts Tagged With: disappointment

Sick-Boy Cycle

Jo Isaac – Joseph Isaac: “May the Lord add Laughter.” We are praying for laughter. Both for a change in circumstance – one that might yield the fruit of laughter – and of disposition – one that might be more prone to laugh.

Those of you who still read this blog know that my months-long silence is a digression from my posting pattern of the previous two years. This has not been for lack of a story to tell. There’ve been other reasons for my silence.

If I could I would tell of a long winter. Of psychotherapy and depression. Of prednisone induced Bipolar II and mood stabilizers. Of 12 months of not writing. I’ve had the wind knocked out of me, in a way. Gut-punched while stepping out of the ring. Things were supposed to get better. But since last summer and the completion of chemotherapy I’ve stopped writing to ease my painful hands. I’ve got weak wrists. Haven’t been able to seriously play guitar for two plus years. Any creativity’s been thereby stifled. Dreams and momentum are doubled over, gasping for air.

In October of last year, Crohn’s disease relapsed in my body. I’ve since had to begin taking 6MP: a mild chemo drug that effects the immune system in such a way that there may be a possible link to the onset of certain types of lymphoma. Like the kind I got the last time I was on 6MP. Though it’s not proven, and it’s hard to be certain, the medical profession admits it is at least a potential instigator/catalyst to cancer. I’ve seen several doctors on this issue. There’s really just no great way of treating Crohn’s in the medical world.

Every treatment comes with a potential catch. And though the cancer connection is as of yet hypothetical, it is nonetheless a mental/emotional blow. Feels a little like we’re starting the cancerous cycle all over again. The sick-boy cycle. Question: “Will I ever be well again?” The answer seems to be given in a Crohn’s relapse and its subsequent treatment: “Forget it, sick boy.”

Clinic visits and doctoring are still a significant part of every week. Weekly schedules revolve around such things. Makes it hard to exist as anything other than “the patient.”

We have been genuinely enjoying the summer. July at least. But the pleasure seems an event, or pocket/exception, in an otherwise stark landscape/era of ambiguous despair. This is either the beginning of better times, or another precursor to hope deferred.

Jo Isaac is a prayer, and perhaps part answer to that prayer. He has been a delight. Sleeps well. Takes a bottle. He has unlocked untapped affections for the other two boys in me. Love and delight has been exponentially multiplied in his presence. I’ve enjoyed being a dad more these days than ever before. We’re praying he is this way a harbinger of better times.

I write now out of that need for prayer. Prayer for direction. Clarity. Strength. Hope. Hope. Hope. While I was on chemotherapy, hope was based at least in part on the fact that chemo would one day be done and I would be healthier than before. That day long ago came and went. Didn’t anticipate chemo leaving quite the mark it did. Fatigue from the fight with cancer and its treatment has been known to last for years. This is made worse by effects of Crohn’s and its treatment. And this chronic, undiagnosable pain and its treatment.

This is the backdrop for the persistent question of vocation and provision. Man’s got to do something. To work. To contribute. While I desire most to be a writer and itinerant speaker (and music would be nice, too), my hands hurt and don’t work well. The same could be said of my heart. Speaking then is also made difficult. I was in ND in March, right at the bottom of a mid-winter sinkhole, my heart was depressed and slow to hope. Speaking that week was very difficult, and I have doubts about how beneficial it is for my audience when I speak out of such a place. And it is a place I’ve found myself in more often than not this year.

Other jobs are made equally difficult, even unattainable, by these persistent ailments. Our current living arrangement is nearly perfect and the least expensive way we could live in the Cities. Still, the sum of my disability check and Jen’s wages renders even this unsustainable. We would soon sink were it not for charity. We float only on the good graces of generous people. And these days, just barely. Family, mostly. And a few good friends. The gratitude weighs heavily on my heart for some reason. The words “thank you” get caught in my throat. The pursuit of wellness for this body has become an expensive venture. And the weight of it is often debilitating. So pray, please. Pray with us. Pray for us.

I would not be writing or posting this if there were not still some faith in me. We are expectant. We are praying and asking others to pray with us that God would provide something, somehow, in such a way that we would laugh. We are considering paths for our future and asking God for discernment, words, and courage. We are praying for new ways of living. Pray with us, please. And rejoice for the prayer, the promise, and the life of our little Jo Isaac.

Thanks for checking in.

Still His,
Jeremy

P.S. I will be speaking/preaching in Illinois and St. Michael, MN three Sundays in August. This also in the midst of yet another Crohn’s flare-up. Again, your prayers are more than appreciated.

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Categories: Cancer | Tags: , , , , , , , , , , , , | 11 Comments

There Will Be More

00lollipop.jpgThank you faithful friends and onlookers. I know you’re out there. I’m still here. There’s much to say, but I’ve been relatively unable to say it. At least on the page. I should maybe start podcasting. Yapping’s just not the same. My wrists have been bad these past months. Haven’t been able to write much more than a few short emails. I do seem to be getting stronger altogether, just not in my wrists. Pain’s not vamoosing either. I snagged iListen for my Mac, but my G4 can’t keep up with it (or me) yet. I speak a sentence three times before I realize it’s working on what I said, then it spits out three different versions of that sentence – none of them making any sense at all. Sometime in the next week or two I hope to post a page. Been busy with clinic visits, rehab, and work on a room in our basement to serve as a music/writing studio for me someday. Yes, someday. Still hoping, trusting I will get that new body. Or at least this one made new. Please check back again soon, and don’t stop praying for us in the meantime. 00poindext.jpgDifficult transitions abound. Struggles in the head, heart, and hands. Pocketbook, too. Have posted a message from a three part series I delivered back in August. The other two I’ll put up once it seems the first has gotten out. The JE myspace (link to it from my homepage) now has two video clips from FLY 2005. Long overdue. But it’s fun now to see the cueball. New photos on this site are also long overdue. I have hair now. And get haircuts. Would be much easier if I could hold a mouse. Someday…

Still here (and His),

Jeremy

Categories: Cancer | Tags: , , , , , , , , | 6 Comments

Rant I (My Aching Back)

I apologize again that it’s been so long.

Believe me when I say it grieves me that I cannot write more these days. There is much to tell. For so many people, blogging serves as some sort of therapy. It is no less for me.

As a dude with a poetic bent, writing is almost as primal as breathing. I do it to live.

shades.jpgRegardless of the medium, the act of writing is always a conversation – with myself, an audience, or God. And as such, I always come away with a deeper understanding of something.

These days of limited strength and mobility – especially in my hands – I miss it like a fish might miss the water.

I can only tap out about a sentence or two at a time. It is painful, and it wears me out.

So I cannot take the time to follow this worthy tangent any further. This makes me sad.

This past month has been a hard one. Released from the predictable routine of weekly chemo crashes and monthly prednisone hits, I anticipated a slow but progressive regaining of strength, and a gradual diminishing of the pain.

It has been anything but this.

I began regular trips to the Y therapy pool. I’m not exactly swimming. What I do is more like floating, but it is helpful nonetheless. I’ve been told this is what I need to do to get my joints and muscles working again.

I stretch and I breathe. I do arm circles. I’ve been doing this for an hour a day, four days a week, for three weeks now. Is that over doing it? Is that not enough? It’s really about all I can do if I still want to walk to my car when I’m done. My back is so stiff and swollen. And hot. And it hurts. Did I mention that it hurts?

If this is the pain I must push through to get stronger, to get better, so be it. Like the two weeks of conditioning practice at the beginning of the football season. Coach says it’s good for me, so I do it. Even though it feels like I’m breaking. If this is that, then I’m glad I’m getting better.

But I remember that kind of pain. And sometimes I’m not so sure this is it. This feels more like injury. Like a sunburn in the sun at eleven in the morning, with six hours of UV to go, and no shade or sunscreen in sight.

cennlake2.jpgI have to ration my steps. Like I only have so many per day. One Saturday night we took the boys to the park. We walked too far one way and I barely made it back. Two days later I thought I was going to pull muscles in both ankles walking to the kitchen for Tylenol.

It is very hard doing life right now. I understand the process of healing from the cure can be a long one. My oncologist and friend said it may be August before I begin to feel significantly better. But both he and another doctor I recently saw shrugged their shoulders at the apparent worsening of my pain and the lessening of my strength.

It’s not just my back. It’s my shoulders, wrists, hip, legs, and neck. I get muscle cramps and spasms when I sit or stand for too long. All this while still on 24/7 narcotic pain meds.

So I began seeing a chiropractic doctor last week. Longtime friend and neighbor Joel Fugleberg is a doctor now. He’s got a clinic in Chanhassen and a home here in Bloomtown. I called him up on a Wednesday in a fog of pain, and asked him if he could take a look at my back.

My first adjustments were, plain and simple, out of this world. Two cracks in my neck released a rush of life down through my chest as though blood started flowing to the rest of my body for the first time in two years. Just incredible. And after a week of this, muscles around my spine have ditched some inflammation. I’ll be seeing him regularly now for the next several months, and look forward to describing all this in greater detail when I can.

I am simultaneously seeing a physical therapist who is not frowning upon my chiropractic affair. Rather, she seeks to works with what Joel is doing to rebuild strength, stamina, and proper function in my back and the rest of my body.

As to what exactly is wrong with my back (and subsequently the rest of my body), there is no one thing that can account for it all. We know I have spinal stenosis and several compressed and mildly herniated discs in my lumbar region. I have an abnormal curvature in my spine. A bone spur and several slightly pinched nerves in my neck. There’s an aberration in my left hip joint and minor osteopenia in my bones. And for years now, I’ve had seasonal inflammation around joints all over my body.

Major muscle groups in my trunk and limbs have either atrophied or stopped firing when or in the way that they’re supposed to.

How this is related to the cancer is loosely assumed. Except that I spent much time in bed these past two years. And when I was up and around, chronic fatigue didn’t allow me the liberty to spend extra calories on correct posture, so little muscles along my spine have been working overtime. My medical records show a cumulative height loss of at least half an inch (some as much as three-quarters) since I was initially admitted in May of 2005.

I am shorter now than I was in seventh grade.

So this is what we have to work with. I’ll say this briefly to end this entry on a positive (albeit staccato) final chord: I feel very cared for by the handful of health professionals that are contributing to my recovery right now (Naomi, Joel, Trisha, Randy, Roy, Lucy, etc…).

I am very appreciative of the fact that each of them recognizes and respects the worth of the other, acknowledging the intricate integration of each of their fields (massage, chiropractic, occupational, oncological, cranial-facial, dental). And that they understand collectively that health is multi-faceted and modern science is young.

It may take work on account of the patient to bring both alternative and widely accepted therapies to the same table, but it also takes willingness on the part of the practitioners to work together. I am in the care of such people.

tinfish.jpgMy hands have done too much. This is the work of several days of writing. Again when I can I will post a lament about chemo brain, fatigue, toxins, finances, or the adverse effect of all these things on family life. In the meantime, please be praying for me and mine.

Still His,
Jeremy

PS. Thanks to those of you who let me know you’re out there. Some surprises, to be sure. I wish I had the time and all else to write a little something to each of you in return. I hope that this will suffice. Oddly, there are still at least another thousand regular readers who remain nameless to me. Perhaps this is something I must get used to. Regardless, warm welcome to all of you who find yourselves here from time to time.

PPS. Keep in prayer my good friends Kanoa Boroos and her husband, Jason. Kanoa was diagnosed last week with a brain tumor that is to be treated with 6 weeks of radiation. Her prognosis is good, but radiation is unpleasant, nonetheless. She currently has 35 staples in her skull and a beautiful head of hair. Not to mention a gracious spirit. God bless you, Kanoa.

Categories: Cancer | Tags: , , , , , , , , , , , , , | 11 Comments

With Your Permission

jeremys.jpgI can assure you that my inactivity on this blog this past month has not been directly related to the end of my treatment. In many ways there has been more to tell about these weeks than there was during a good part of the last two years.

It’s just this:

A) I can’t type for long. I manage a sentence or two every five minutes, and maybe two or three paragraphs per day. Then my wrists pretty much quit.

B) What I’m writing these days reeks to me of self pity. I wonder whether it is anything more than an unecessary and altogether negative rant. I personally don’t mind being really honest about pain, so long as I can see some way that honesty will bring forth some good thing. Right now, being I can’t quite put any path to goodness together in my head (and I feel it even less in my heart), I seriously question the value of my going into great detail about the nature of these present trials.

If I were to describe well how things hurt, and what is so hard, I will have little left to extrapolate the good. But if I give the cliffs notes on the pain and go straight to the good, I will have misrepresented our reality, and what good there is might lose some of its context and therefore some of its weight.

cennlake.jpgAnd being I must now so carefully budget my words, and yet don’t have the mind or the physical strength to sit at the keyboard long enough to make timely and appropriate edits, anything I write, if it is to be thorough about anything, is necessarily going to read like an uncensored journal entry. Limited in its perspective, and raw in its content.

If I am to be honest about anything these days, individual entries will leave loose ends untied. They cannot be stand alone representations of the big picture. They will need weeks of context to be understood.

I really do enjoy writing for anyone who will read. And I want badly to offer words that are ultimately beneficial for anyone who happens upon them. But right now I am needing to give my time and strength to things more physical in nature, and will have just enough left to write, but not necessarily to write well.

So I’m not sure exactly why I feel I must ask your permission, but would you give me the grace to give what I’ve got? I can write a little bit every couple of days, but it’ll most likely be the complaint without context; the despair without a devotional at the end; a snapshot of reality without redemption; the tension without the resolve. (Ever read Psalm 88 and said Amen?)
Are you okay with that?

jnjtrees.jpgWould you promise to keep in the back of your mind that I do believe God is good and strong and present? That we receive his goodness daily and are thankful for it? That we do really still hope that things will get better? And if they don’t, that Jesus is still our Lord?

Ah, the mind games we play…

Thank you, friends.

Still His,

Jeremy

Categories: Cancer | Tags: , , , , , , , , , | 4 Comments

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