How'm I doing?

More un with chemo

2005-01-25T18:27:00.000-06:00

Hi everyone. I’ve been good about keeping this thing up-to-date, so here goes. I been sick. Briefly a combo of extreme bloating of my abdomen, diarhea, and inability to urinate (sorry for the gory details) led me back to the hospital again, for 2 1/2 days. To be honest, I was worse coming out than going in. Today, a home health care nurse came by and was much more help. We are trying some new stuff and it seems to be doing something.

Sorry for such a downer post, but “How’m I doing" is the title of this blog, so sometime we get the bad stuff.

But --- I continue to try to br hopeful. I think this is all chemo-related and we go back to Houston next week for tests.

At any rate, prayer still works and I know my faithful readers will remember us.

trees

2005-01-19T16:54:00.000-06:00

trees,
originally uploaded by tuscaloonica.

Here's the photo I didn't get yesterday. Not much of a pic, but it's nice to get out when I can. Not much to post, except my appetitie is better today and I think I'm slowly climbing out of this chemo cycle.

More later

Better

2005-01-18T18:23:00.000-06:00

I’m always hesitant, unlike Margaret, bless her, to say I’m feeling better when I still feel this bad, but the fact is, I have felt better today, if you overlook a digestional deal that is a bit worse today. It gives me hope that I will feel still better tomorrow.

I laid down in the backyard hammock this afternoon and tried taking a picture of the beautiful view I was looking at to post, by my digital camera was acting up a bit. I’ll try again tomorrow.

A Morning Resolve

2005-01-16T09:29:00.000-06:00

This morning, laying in bed before getting up I had something of a revelation. I have been focusing on my diminishment's, on my inabilities -- in short on how I feel instead of who I am. I am still Tim Cooper. I find myself looking back to the person I was before this chemotherapy began as though he were a thing of the past -- well it’s still me. I’m the same person I always was, I just don’t feel so good right now. But with God’s help, I will get better and better.

This resolve is serious. Less moaning about my weaknesses and limitations, but instead, looking for my strengths. There are better days ahead. Thanks be to God!

Thankful for

2005-01-15T14:55:00.000-06:00

Okay, yet another attempt to post a hopeful post. The following are things I am thankful for:

1. Martin seems to be getting over his crud and I guess I’m not gonna catch it.

2. My wife is the greatest. Nuff said.

3. Canterbury Chapel has come through for us big time, bringing us meals, some of which I can actually eat. My goal is to drag myself to church tomorrow if at all possible.

4. China Buffet’s Mongolian Beef. I woke up thinking about this stuff and Marg brought me some for lunch and I ate a good bit (for me anyway).

5. Hope. Okay, this one’s tricky, because I’m so down most of the time, but I am grateful for hope when I really feel it.

6. Earthlink got my DSL service to work with my email -- on the phone no less. I was very impressed with their service.

7. My loyal readers. I don’t manage to respond to all the comments, but they are always appreciated and traffic seems to be up. Always thanks to my number 1 reader, Uncle De, who always manages to give me something to smile about.

8. Almighty God, who alone can bring me back up out of this chemo junk and back to some semblance of myself. As I have said before, faith is not always just a matter of feelings, but deep-rooted knowledge. I am thankful to know I have that grounding, even when my faith seems weak.

Feels better doing something

2005-01-14T16:23:00.000-06:00

Friday afternoon and I’m feeling a teensy-teensy bit better. Having some minor work that I can get done for Randall is very rewarding, if frustrating until we get the high-speed connection. It is infinitely better to have SOMETHING to do, as boredom is a major problem. Not much to write about without going into listing symptoms, which I think is counterproductive at this point. Suffice it to say, I seem to have missed catching Martin’s crud so far, and feel as I said a teensy bit better if I set my mouth right.

Lots of folks have helped out with visits and food!

PS. I just got my DSL modem! No more busy signals while surfing the net (fast)! Yahoo!

A laptop from work

2005-01-12T16:30:00.000-06:00

The folks at Randall had a spare laptop computer, so they brought it over and we’ll see if I can get any work done on it. I splurged on DSL the other day and we’ll see how that works out when the modem gets here.

I still feel awful. Martin has a bad cold and it’s probably inevitable that I catch it, but what are you gonna do?

Lack of appetite and sheer boredom are big problems right now. Sorry I’m not able to respond to individual comments right now, but, as always we are hopeful of feeling better soon, if I can stay out of the ER with a fever.

Sunday Evening

2005-01-09T17:43:00.000-06:00

Well, another day is coming to an end and I thought I’d make an attempt at a positive post. I say attempt, because I don’t feel very good at all, although Margaret insists I am doing much better that I did last round. I have been fairly busy today, in that I rode with Margaret to B’ham and back to get Uncle Robert off in his rental car to Memphis. I also drove to and from the library to return some way overdue books.

We are trying to eat, but it is the worst part of this round so far. Nothing sounds edible to me at this point. My diet so far today: One individual box of Sugar Pops for breakfast, a couple of bottles of Ensure/Prosure whatever, the better part of a Taco Bell crunchy taco supreme and a handful of vinegar and salt potato chips. Margaret has made a delicious looking beef stew for dinner, but I have my doubts I’ll be able to eat any of it.

So much for a positive post. Oh, one other good note for the day. Roland and Virgene from church delivered the sacraments and it was a very positive, strengthening experience. My faith seems weak to me at times these days, but I know these are just feelings and are tied to the chemotherapy. Knowing all of you folks out there praying for me and with me is immeasurably helpful.

We’re home!

2005-01-07T19:50:00.000-06:00

Just a very quick note for now.

Well, the grueling trip to Houston was in fact, pretty grueling, but we are home!!! I was on the chemo drip until 2:00 am last night, so we are pretty tired, but encouraged to be fighting this cancer. I feel like the second round will be more manageable than the first round. At least we hope it will be. Thanks for all the extra prayers and keep them coming!

Here we go!

2005-01-04T15:39:00.000-06:00

My local Dr. (Misisigia) says I am good to travel, so I’ve got a schedule worked out with my nurse in Houston and it looks like Margaret and I are on our way tomorrow morning. In many ways this is the scariest thing I’ve ever done, but we just have to try everything we can. Tests tomorrow, consult w/Dr. Stewart Thursday and possible chemo on Friday, with us getting home either Friday night (or more likely) Saturday morning.

Please pray that I will have the strength to do this. I do feel better every day and If the Docs say I can do this, then surely I can. We’ve got a baby-sitter who Martin likes lined up for him, but please remember him in your prayers as well.

It may be a while before I can post anything else, so I will try to be as positive as I can about this trip. It is fighting. It is doing something positive. I have tons of love and support from all of you out there and most importantly, God is with us. We will return stronger!

Back in the fight?

2005-01-03T09:52:00.000-06:00

I talked with my Nurse Practitioner in Houston a few minutes ago and she seems to think I’m well enough to travel for round 2 of my clinical trial as early as this Thursday. At least she is going to talk to Dr. Stewart about it and get back to me. On the one hand the prospect of getting on that plane is the scariest thing I can imagine, but on the other hand, giving up on this trial is just that, giving up -- something I am determined not to do.

Our plane ticket situation is completely flexible, it’s just a matter of getting someone to look after Martin, which I’m sure we can arrange.

More when I know more, meanwhile we’ll all keep praying! As I said, traveling is a scary prospect right now, but we can do it!

Late afternoon Postscript: Rather than put up a new post, I thought I'd just add a bit here at the bottom. I have felt better today than I have so far -- still very weak and crummy, but getting better. The travel issue is still not resolved, but tomorrow I see Dr. Misigia (spelling?) at 1:00 and we'll see what she thinks.

A new day

2005-01-02T08:28:00.000-06:00

Okay, here I am at the start of a new day, one in which I can mope around and be miserable or one in which I can make an effort to be cheerful and hopeful. Phrased like that it sounds pretty corny and obvious, but it really is a choice I have to make. This early in the morning, I often feel pretty good, and it is a good opportunity to head in the right direction. Not being able to go to church is a drag, but surely this will be the last time. By Thursday evening’s healing service, I’ll be there. And even though I cannot be in church today, I can remind myself that it is the God we worship there that is the source of all hope, and claim my share for today.

Blogging as busywork

2005-01-01T13:03:00.000-06:00

Happy New Year! I only wish I felt a bit happier myself. Being home from DCH is great, but I can’t seem to shake a bit of depression. I guess the fact that I still feel weaker than a cat, my lower back hurts, my head is still stopped up and I’m bored silly kind of add up that way -- plus who knows what all these antibiotics does to one mentally.

My priest, Ken Fields came to see me this morning and suggested that regular blogging was probably good therapy, so I’ll try to post daily, even if it means I may not be as upbeat as I usually try to be.

A new year does seem to be a good time to reflect on the year past and look ahead to the coming one. As to last year, it was in many ways a great year, with lots of travel and lots of the joys of ordinary life, through October at least.

My challenge is to be hopeful that we can have a good 2005 as well. My health situation, at least for now, is worse, but even within the context of poorer health, I can learn to enjoy life. As I said, a challenge.

Ken reminded me of a prayer from the Book of Common Prayer hat should be very useful to me right now:

In the Morning
This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen.

P.S. A tonsorial note: My moustache began thinning in the Hospital, such that as soon as I got home I went ahead and shaved it off. I was beginning to look like a down-on-his-luck Hitler. So now my rapidly diminishing hair consists of the gray beard still clinging to my chinny-chin-chin. I think it looks better anyway. I'll post a picture soon.

Home again, home again. But where have I been?

2004-12-31T10:52:00.000-06:00

I’ve spent the last four days in the local hospital with this pneumonia -- fluids and antibiotics dripping ceaselessly into my arm the whole while. Now I’m back home and while I still feel pretty crummy, that is mostly from lying about for four days, plus this annoying tremor that they can’t seem to figure out. The great news is they did an MRI of my brain and found no new mets! Thanks be to God!

I am going to force myself to take it easy for a while. Of course that’s easy when I still feel crummy. My goal is to make it Houston in time to not be shut out of my protocol, although it’s hard to get enthusiastic about either travel to Houston or a second round of this chemo.

Thanks to everyone who visited me -- too many to list, but don’t forget visitors are still welcome now that I’m home also.

Merry Christmas

2004-12-25T18:57:00.000-06:00

Talismangame,
originally uploaded by tuscaloonica.

May all the blessings of him whose birth we mark today be to everyone who reads this post.

I truly wish I could say I felt good on this most holy day, but in fact, I felt very crummy. I guess that's pneumonia, though. My last post (Thursday evening) I was staring to feel a little better and it continued through Christmas Eve. I felt so good I went to services at Canterbury and that may have been too much. Today, I have felt almost as bad as Thursday, if not worse in some ways. My fever remains low, however, so I guess it could be worse. As I write, I feel a little teensy bit better, which gives me hope for tomorrow. Tomorrow, I will know not to go to church, much as I would like to, and as boring as these four walls have become.

The photo is of me and Martin playing with his fave present, an out-of-print game called Talisman, which was harder to find that Tickle Me Elmo could ever have been.

Writing this blog is good medicine somehow. Once again, Merry Christmas to all and please say a prayer that we can beat this pneumonia sooner, rather than later. I ain't really so patient, I'm afraid.

Too sick to blog

2004-12-23T20:40:00.000-06:00

That’s, in a nutshell, why I haven’t posted in a while. I spent Tuesday night in the ER, where I discovered I had pneumonia. Then Wednesday, I spent most of the day at the DCH Cancer Center getting fluids and today, (Thursday) I felt about as sick and low as you can feel. I believe I posted earlier about feeling .00039 percent better, well, around 6:30 or so tonight, I began to feel just that tiny bit better, which gives me lots of hope that Christmas Eve will find me where I want to be -- feeling like a human being instead of a big uncomfortable slug.

Antibiotics are great, but prayer is better! Someone’s prayer paid off this evening in that I feel much better about feeling better tomorrow!

Tim

PS Thanks especially to te following angels of the last few day, Ken Fields, Cammille Sample, Laurie Fowler, Nick and Mary Sella, James Weston and always Margaret and Martin

Yeah, I know it's the same picture, but...

2004-12-19T14:56:00.000-06:00

webcard,
originally uploaded by tuscaloonica.

This was the final version of this year's Christmas Card. If you'd like to see it bigger and maybe actually read the small type, just double-click (or whatever in Windows) and it'll open at the flicker.com site where my pix live.
Thanks. & Merry Christmas!

Food, Glorious Food!

2004-12-19T14:45:00.000-06:00

The song from “Oliver comes strongly to mind as I title this post. From Thursday morning Dec. 9, through Friday night, the 17th, food seemed like an alien concept to me. I knew I must have it, yet it sickened me and every small bite was forced down with effort. TV commercials seemed designed to show that the world was obsessed with giant Hardee’s hamburgers and Meat-lovers pizzas.

In short, I have been as sick as I have ever been, and weaker than a cat. But, as posted yesterday, Saturday morning the veil was lifted. Since then my appetite is at near-normal levels. This is a blessing of such staggering proportions that I can scarce express it. My strength is returning and I feel much better in general.

On the other hand, I have congestion in my head that is making me miserable otherwise and my bowel is in a constant state of extremes, but, having an appetite again is so much larger than these relatively humdrum problems that, who cares!

Thanks for the many prayers on our behalf. That prayer works is a daily fact of my life.

P.S. I am a technically challenged kind of guy. To those who post comments rather than send e-mail directly, the e-mail notice I receive doesn’t allow me to reply, so if you’d like to hear back from me, write me at
timacooper@earthlink.net

Bacon and eggs

2004-12-18T08:49:00.000-06:00

.. and half a biscuit!

Whew! It’s been a rough week, probably the worst yet. Since my last post I have not eaten much of anything, had diarrhea, head congestion and almost constant gagging/retching. Not a very pretty litany, but, hey, that’s my blog!

I haven’t felt like posting physically, and emotionally I wanted to wait until I felt on the way out of this hole before doing so. This morning I ate the aforementioned breakfast and am at last hopeful that I am beginning, if only just, to crawl out of this thing. I typically feel better in the morning and realize that I must still take it very easy today, but I wanted to be able to fire off something to let everyone know I was still in there slugging, so to speak.

Special thanks to Cynthia White, Tony Brock, Stacia Roberts, Max Heine my Cursillo Reunion Group and especially the Rev. Ken Fields for their support! Love all around!

Chemo yuck

2004-12-11T08:34:00.000-06:00

Well, it’s been a rough few days and I haven't really felt up to sitting here hammering out how lousy I feel, but as of now (Saturday morning -- I’m a morning person) I feel better than I have for a while, so here goes.

My “travel angel” was working overtime for me on the flight to Houston Tuesday. I spent the last half or so of the flight sitting and visiting with the Episcopal Bishop of Alabama, the Rev. Henry Parsley! He is a very warm, kind and gracious man and let me unload quite a bit on him. He is on the mend from a recent health crisis of his own and was especially understanding of, and interested in, what I was going through. He assured me that I would be in his personal prayers. As for me, it was a hopeful start anyway.

At MDACC it was wait, wait, wait. I didn’t get to see Dr. Stewart until late and by the time I had signed all the paperwork and headed to my hotel, it was almost bedtime.

The next day was one seemingly endless series of drips. My return flight was scheduled for 4:55, but it soon became obvious that I would have to stay a second day. Other that extreme tedium, doing the chemo drip isn’t all that bad. After I finally finished dripping, I went to Rice Village and dined on a cup of green tea and three, count ‘em, three pieces of sushi.

Which brings up my biggest problem right now, which is that my already unsteady appetite has now run smack dab into chemo-nausea, which has left me virtually fasting for these last three days or so. Those of you who know me know how much I love to eat and to be physically sickened by one corner of a Frito chip is pretty scary.

But that was yesterday. Today, I am going to redouble my efforts at eating small amounts of whatever I can get down as often as I can get it down. I had almost a half a bowl of oatmeal to start and it went OK, so my hope is that the chemo-yuck my be starting to wane. We’ll see.

Please keep us in your prayer during this new chemo cycle. The thing I keep clinging to is that if this stuff is shrinking my tumors, then keep bringing ot on!

Fisherfamily

2004-12-04T09:18:00.000-06:00

fishin,
originally uploaded by tuscaloonica.

Slight (hopefully) delay

2004-12-01T07:53:00.000-06:00

Rainelle, my research nurse, bless her, called last night to tell me the study I was to start on Friday is on hold for a few days while they finish some red tape of some kind or another and will let me know when I can reschedule my flights, hopefully some time next week.

I read the many-page fax of the study write-up yesterday, and like the write-ups of the previous studies I've been on, it is pretty tough reading. Heavy on the side-effects, light on the possible benefits. Luckily, I've gotten used to the negativity of these documents and can even see humor in them. If you ever thought TV ads for drugs had scary lists of side-effects, you should take one of these babies home to read at bedtime!

Speaking of side-effects, Rainelle told me that my appetitie loss was due to the Celebrex and that I had mistakenly not been prescribed something to counter-effect it. She did so and I am extremely hopeful that I will soon be my usual gluttonous self. She also said not to worry ovemuch about the fatigue -- that getting over radiotherapy sometimes takes a while, but that one does come back.

More when I know more.

A river runs through it

2004-11-29T13:24:00.000-06:00

It's been too long since my last post, so I'll try and bring things up-to-date quickly. After such hopeful news last time around, I wish I could say things have steadily improved, but, while I am doing pretty well overall, I still find myself fatigued most of the time and my appetite has pretty much fallen off the table -- not a problem you really want to have at Thanksgiving.

Speaking of that holiday, we just now got back from Margaret’s brother Robert’s fishing cabin on the White River in Mt. Home, Arkansas. It was a great trip. Although I worried a bit about the 8-hour drive on Wednesday (we broke the return trip back into 2 4-hour drives), it wasn’t too grueling, as Margaret did much of the driving. My digital camera was on the fritz, or I’d have a couple of photos to post. I’ll post one later when Robert sends me some of his digital pix.

It’s always great to visit such a beautiful part of our planet. Birds and wildlife of all sorts abounds, and while I am by no means a sportsman and will probably never get the hang of fly-casting, just getting out into the middle of a river in waders up to your chest makes up for all the trout I don’t catch. All the poetic stuff folks write about fly-fishing is true as far as I can tell. It is a powerful experience of nature.

While Marg and I struck out, Martin seemed to catch a fish every time he cast his line. We did that catch-and-release thing (I’m usually more the catch-and-devour type, but when in Rome) and sometimes the fish released itself before Robert could get the picture, but Martin caught a total of five trout, including a couple of really good-sized ones. Robert gave Martin an early Christmas present of a fly rod and reel that we are all very pleased with. I think the nearby Cahaba River is a good fly-fishing spot, and we’ll give it a try one weekend soon.

But to return to medical junk, on the drive down Wednesday afternoon, I spoke with my research nurse, Ranelle (who worked with me last Spring during my first clinical trial, and I’m crazy about) and we worked out my near-future plans. The possible study I mentioned in my last post fell through. The trial Dr. Stewart recommends in its stead is a chemotherapy regimen plus experimental drug. The chemo combo includes a platinum-based drug that was part of last Spring’s treatment. I had some bad reactions from it last time, but I also had the biggest shrinkage of tumors to date, so if they think this is what’s best for me right now, I’m all over it. I’ve gone way too long without throwing anything at the lung tumors.

So as of now, my plans are to fly to Houston Thursday morning, see the doc that afternoon and sign all the paperwork, then Friday morning, start the first of six, once-every-three-week, eight-hour chemo drips and fly home Friday night and collapse. seriously, I think for this first trip will I’ll be fine by myself, but depending on how hard it knocks me back, I may have to recruit travel buddies. We’ll see.

As always, keep those prayers coming. Tomorrow morning, I’m filling in for the regular lay-leader for Morning Prayer at Canterbury. I’ve lead Morning Prayer a couple of times before, but it was several years ago. It’s the service I base my personal morning prayers upon, but the opportunity to lead the small, but faithful group who regularly attend Monday’s Morning Prayer at Canterbury is one I am excited and happy about.

Good things

2004-11-14T15:48:00.000-06:00

The title of this post comes from the body of the last post, when I felt a rebuking voice telling me that God was not through showing me good things. Of course, it’s one thing to promise something and another to fulfill the promise. That’s what this post is about.

The prospect of this week’s trip to Houston was forbidding to say the least. On at least three different fronts, I faced potentially devastating news. Which is not to say I was overly scared. The power of prayer was already at work, in that I was in good spirits going in and breezed through Tuesday’s tests like they were the everyday occurrence they almost seem like by now. But fear and doubt were hanging around as well.

Margaret joined me on Wednesday and we had a good “vacation” day, although I probably overdid it a bit. We marched all over nearby Rice Village and dined lavishly at a Spanish tapas place (crab cakes, scallops, grilled lamb chop, marinated olives, etc...) before heading back to the hotel and watching a movie until nearly 11. Aren’t we wild?

Anyway, Thursday morning at 9 was our appointment to hear the test results and find out what my future with M.D. Anderson is likely to be. Prior to heading for the 9th floor, I suggested we visit the chapel. MD’s chapel is a round, interdenominational worship space with an altar in the middle and pews with kneelers all around. I usually find a small handful of patients and/or employees quietly at prayer. This morning there was a fair number of folks in the chapel and five ladies looked to be heading for the exit as we entered. Margaret and I knelt and immediately noticed these ladies were not leaving, but were in fact slowly weaving about in a sort of liturgical dance. They came right up to us and began praying. This was of the hands-on, spirit-filed type of healing prayer. The ladies seemed to know that we were facing something serious that morning.

I have experienced many types of healing prayer during this journey, and this was by no means the first to include speaking in tongues. One thing I have come to appreciate is that belief on the part of those praying is more important than the style or content of the prayer. At any rate, the ladies did their thing and we rose from our pew ready to hear what Karen Bisotooni, my doctor’s nurse practitioner, had to say.

I mentioned three concerns I had about this trip. — they were:

No. 1. The brain metastasis. My fear was that the radiation had not done its job. My hair had not fallen out and I still felt a bit foggy and very fatigued. Had the local docs oversold the benefits of radiation? ... THE GOOD NEWS: Karen said things seemed to be clearing up according to schedule. Of the 15 spots that showed up on the MRI three weeks ago, she could only find eight and they were very small. She confirmed that the radiation was working correctly and that my symptoms were likewise in keeping with good progress. She called the brain mets a “bump in the road.” And by the way, the hair is finally thinning quite a bit.

No. 2. Overall tumor growth. My fear was that the cancer spreading to my brain was a sure sign that it was growing fast. Since my diagnosis last year, the main lung tumor has not grown very much, but I had feared that it was now seriously on the march. ... THE GOOD NEWS: The CT scan showed all the tumors from chin to abdomen to be essentially the same size as the last scan! Stability is my second favorite word, next to shrinkage.

No. 3. My future with M.D. Anderson. From the beginning I have understood that standard treatments are of only minimal use in my type of cancer, and that only through brand-new, clinical-trial type treatments was there any medical hope for a long-term fight. Being a part of what is widely-recognized as the leading cancer research facility in the world has been of great comfort to me, both in terms of hope for that long fight and also because it makes me a part of the struggle to beat this awful disease. On my previous trip, Dr. Stewart implied that if the cancer gets into to my brain, that experimental options would be severely limited. He mentioned only one possible study that he didn’t think would be a very good option for me anyway. So basically, my fear was that this would be a farewell trip to Houston and that my best course of action would be standard chemotherapy at home. THE GOOD NEWS: In the three weeks since my last visit, as many as ten new studies have opened up that I might qualify for. The clinical trial we are looking at now involves an experimental pill and the only holdup is the pharmaceutical company is coming to Houston next week and nobody is sure why -- it could be that they are ending the study. But at any rate, Karen assured me that there will still be things that they can do for me, as well as several new drugs that are on the market. Next trip to Houston is tentaively scheduled for the first week in December.

To make a long post even longer, I have to tell what Paul Harvey would call “the rest of the story.” Karen Bisotoomi spent a long time with us and was very encouraging. One of the things she did was show us the CT and MRI images on a computer. She told us how good she was at feeling a patient’s tumors based on what she sees on screen -- even that she could often feel very small tumors on one’s liver. Of the ones in my lymph-node area there was one, however that though it showed plainly on the CT scan, try as she might she could not feel! A tumor that was there Tuesday and gone Thursday! Margaret and I looked at each other and thought of those Spirit-filled ladies downstairs...

Healing prayer is real. To everyone who has followed this blog, be they family, friend or total stranger, my sincere thanks for every prayer on behalf of me and my family. It is humbling and deeply satisfying knowing that we are so loved.

A gentle rebuke

2004-11-07T19:07:00.000-06:00

Talking more positive than I really feel is something I am sometimes guilty of, but it is part of my established coping mechanism. A year ago I described this process as wearing a mask until your face actually grows to look like the mask. I still think this is a good metaphor, but, like so many things in life, the process is not a one-time deal, but an ongoing, everyday tutorial. I will say that having a year to grow in this fight before any real setback has given me much more discipline than I would otherwise have had.

Yes, the last three weeks have been rough. Brain metastasis. Radiation. Uncertainty about near-future treatment options. Cough. Cough. Cough. Yes, I have been guilty of some despair. But as always, I have also had many glimpses of mercy, joy and healing. God’s power is real. All-the-way-down real. By that I mean ultimate reality, not something dependent on how I happen to feel at any given moment. Sometimes I do feel despair. This morning in the middle of the liturgy of Holy Communion of all places, I felt myself nosing into a “comfortable” dark corner of despair. Then I felt a sudden rebuke. Whether direct from God or just from the knowledge and wisdom he has granted me, I felt a voice asking, in effect, “Is this the way I have shown you? Do you really think I’m going to stop taking care of you and showing you good things?”

We have been too far, and seen too many miracles large and small to stop believing in God’s promises now. The mask is back in place and I think it really does look a lot like me.

As to the more mundane side of the fight, I travel to Houston Tuesday to find out what I can as to my future relationship with MD Anderson. Tests all day Tuesday, Margaret comes on Wednesday and we talk to Dr, Stewart on Thursday and head home. At least that’s the plan. Please remember an extra prayer for Martin on Wednesday evening/Thursday, as it’s tough on him when we’re both in Houston without him. Not easy for us either.

P.S. I just purchased a bit of an indulgence -- an Italian wool driving cap for perching upon my fuzzy pate. I figure cool weather is coming and I always looked ridiculous in baseball caps, so what the heck?

Boo

2004-10-31T20:51:00.000-06:00

jacks,
originally uploaded by tuscaloonica.

Well, I've only got three days to go with this radiation deal and so far, so good. I've had minimal problems, other than a bit of drowsiness and odd sleep rhythms. Halloween weekend was too busy and I probably did too much, but what the heck. It's a kid holiday and we had a good one. As for the pumpkins, they're just there to remind everyone to go out and vote their conscience Tuesday and may the best gourd win.

The pre-emptive strike haircut

2004-10-24T21:06:00.000-05:00

chromedome,
originally uploaded by tuscaloonica.

I figured since it's all gonna fall out within the next two weeks anyway, this was the way to go. Many thanks to Margaret's hair-lady, Bunny for the splendid job. I actually think it looks sorta cool like this.

Inevitable?

2004-10-21T16:22:00.000-05:00

This was the headline in the local paper's sports page the morning after the Yankee's had delivered the Red Sox their third straight loss in the American League Championship Series. No team in such a fix had ever even forced a seventh game, much less actually won the series. The word "inevitable" really pulled my strings. It is a word that I have considered and with God's help, have rejected. My type of lung cancer is considerd terminal. Death is "inevitable." Whenever I develop a new symptom or get a bad report the word rears its head in my conciousness and I have to strike it back down.

My last post contained "bad news" and this one has even worse, at least to those who worship at the altar of inevitability. I had a bit of blurred vision last night and at my doctor's suggestion, had an MRI at DCH this morning. The test showed ten small spots on my brain. The idea that this stuff might spread to my brain has beenan ongoing fear throughout this journey -- so much so that I never actually bothered to find out what it might actually mean. Turns out it is not as horrific a situation as I had assumed. Two weeks of daily ten-minute radiation treatments will, according to the DCH doctors, in all likelihood get rid of the brain mets altogether. The only unpleasant side-effect, I am told, will be hair loss, which everyone assumes will happen to a cancer patient one day anyway. The most troubling thing is that this development will disqualify me for many of the experimental treatment options. many, but hopefully not all. At any rate, in two weeks I should be free to return to the main battle of whupping up on the main lung tumor by any means neccessary. This may mean traditional chemotherapy, but we'll cross that bridge if we come to it.

But back to the Bosox. They proved last night that inevitability is just another boogeyman. True, for every team that beats those kind of odds many more succumb, but this year's Boston team did not play the game that way. They did not give up. Giving up is the thing that all but guarantees failure. Not giving up does not guarantee success but makes it possible and puts that first crack in the wall of inevitability. With God's help we will never give up an inch.

Disappointing (but not disastrous) news

2004-10-14T20:34:00.000-05:00

I'm back from Houston and the tests showed that my main tumor has grown somewhat -- enough that my doctor feels the experimental drug has done all it can and pulled me from the study. He and I agree that the best thing is to get right back on another study as soon as possible, and since most studies require a three-to-four week period between any type of treatment, I will get a brief break. I will return to Houston Nov. 9 for still more tests to make sure I qualify for whichever study Dr. Stewart feels would be best for me.

While all the above is disappointing, it was not completely unexpected, as my cough has gotten worse again. At least now I should soon be able to figure out how much of my aches and pains were side effects and how much cancer.

Looking at the big picture, this is just another step in the journey and not a huge setback. We will continue to throw everything state-of-the-art cancer research has to offer at this thing. If I sound like I'm just trying to sound brave and positive, there's some truth in there, but I believe that sometimes it's important to say the words even when you're not 100% there. Saying them helps you to feel the truth behind them and live into them.

As to what I am more certain of, (1.) God is with us and will be there for us whatever happens (2.) Good things are still ahead. Do I know how this mess turns out? No, but I know it will be a victory. (3.) Prayer works. I wrote an email to someone last week that although I could not explain the dynamics of prayer, I knew first-hand that it does in fact, work. To those who said special prayers for me on this trip, thank you and as always, may I have some more?

Off to Houston

2004-10-11T19:41:00.000-05:00

I fly to Houston on Wed. for my usual battery of tests. The results I hear Thursday will probably determine my treatment options for the near future. If the tumors are still stable, and the doctor thinks I'm riding the side-effects OK, then I'll stay on the pills I'm on now. If the tumors have grown, or the doctor thinks things are getting too toxic with the side-effects I've been having, then we'll see what other trials I qualify for and what the doc thinks would be best. At any rate, I'll be glad to have more information at this point. Tests are always kind of scary, but nowhere near as scary as not knowing what's going on.

As always, extra prayers on Wednesday and Thursday will be appreciated. Thanks.

A useful prayer

2004-10-01T14:58:00.000-05:00

0000-bcpred
Originally uploaded by tunicaloosa.

For Trust in God
I was several weeks into this journey before I came across this prayer in The Book of Common Prayer. I use it on an almost daily basis. Its author must surely have been someone acquainted with illness -- I know it captures how I feel about the process of healing prayer.

O God, the source of all health: So fill my heart with faith in your love, that with calm expectancy I may make room for your power to possess me, and gracefully accept your healing; through Jesus Christ our Lord. Amen.

Make-up trip

2004-09-26T15:35:00.000-05:00

Thursday's trip to Houston (Ivan grounded my flight last week) was fairly routine. I saw my doctor for all of 3 1/2 minutes, had some blood drawn and spilled my guts to the nurse for 20 minutes concerning all my various oddball aches and pains. She says I should get my blood pressure checked every other day or so, as it's getting a bit high from the drug I'm on.

My "travel angel" came through for me big time, in that I flew to Houson with a good friend from church who was on her way to Dallas for a verger's convention. When I refer to my travel angel, I am speaking of the many times God has put a friendly and helpful companion in the seat next to me. I have almost come to expect it. I've had a very kind nun, the minister of a black mega-church in Bessemer, the father of a boy who was beating cystic fibrosis and many other folks who have been willing to listen to me unload and/or pray with me.

At any rate, I am through flying until Oct. 13, when I stay overnight and get another CT scan.

Writing as therapy

2004-09-18T16:13:00.000-05:00

notebook,
originally uploaded by tuscaloonica.

My first attempt at writing-as-cancer- therapy was my website journal. This was before I had discovered blogging and it soon became too big a chore, so I dropped it.

When Margaret and I first went to Houston we heard a talk by a Dr. Blair Justice (sounds like someone in a soap opera, huh?). Anyway, among the things he told us was that cancer patients should keep a journal. This was to be a for-the-patient's-eyes-only reporting of my deepest fears, pains and anxieties. Well, I plowed right in and it seemed to be good therapy indeed -- a good outlet for creeping fear. I kept it up pretty regularly over these last ten months or so, but of late I have begun to slack up on it, usually only writing in it when I am travelling or some scary symptom rears its head.

So now I have come full circle and am back on the Internet -- this time with a format that is a bit more attractive and a lot easier to update. But of course, the other journal continues as well, at least I need to get back to it more often. Meanwhile, without violating the private nature of my "fear and loathing" journal, I thought I'd toss out a quote from the first volume:

Sunday, December 28, 2003: "While coughing my way through "Cold Mountain" a lady in the row behind me offered me a cough drop. I thanked her and sucked it. Halls-Mentho-Ironic."

Ivan checks in

2004-09-17T08:44:00.000-05:00

Well, Ivan has come and gone with minimal damage around here. We've been without power since yesterday morning around 9:30 and of course, my trip to Houston has been delayed a week. I'm the sole person in the Art Department so far, so I thought I'd post a quick entry.

The whole hurricane thing has been a good distraction for me. Suddenly being in a situation where everyone (not just me!) is made aware of their mortality was kind of refreshing in a way -- especially since there was no actual loss of life anywhere in the state. Being without power is a bit of a drag, but also kind of fun -- for a while, anyway. The power company is hedging their bets by saying all power will be restored within eight days. I think this is just so they will look heroic when they get it back by Saturday in time for the ballgames.

So how AM I doing?

2004-09-12T13:12:00.000-05:00

I figure it's about time I wrote a posting that actually addressed the topic of this blog -- which is not to say I won't be sharing other stuff from time to time.

Two weeks ago, I got a good report from M.D. Anderson! The main tumor in my lung, the one that is supposedly running the whole show, has not grown since June and might even be a teensy bit smaller. This means that for the time being I can remain on my current experimental drug protocol and hopefully remain stable for a good, long while.

As to the question of how I am doing generally, one of the things it is difficult to express is how to gripe about minor aches and pains without sounding too negative. It is also difficult to know how much of these complaints are from side-effects of the treatment, how much from cancer, and how much from the fact that I am a former hypochondriac. I say former because now I really AM sick! Ha, ha.

At any rate, no I do not feel absolutely wonderful these days. My back aches somewhat, my cough fluctuates but is generally worse than a month or so ago, my digestion and appetite go up and down and back and forth, and two huge callouses on my big toes make walking or standing for long periods a bit painful. Having said all that, I'm really doing very well overall. None of the above, nor my occasional chest twinges amounts to anything like what I imagined having cancer would be like. These minor symptoms come and go and are manageable -- they just get a bit tiresome.

I go back to MDACC in Houston this coming Thursday for an in-and-out visit. Just a consult with my doctor and some blood work associated with my protocol. Basically, he wants to hear how I'm doing side-effects wise.

So basically, as I near the anniversary of when I first noticed anything amiss, I am doing great. This fight has only just begun. As always, please keep Margaret, Martin and me in your prayers.

Martin and Stripes

2004-09-10T18:40:00.000-05:00

martinstripes,
originally uploaded by tuscaloonica.

Just making sure I've got this photo posting thing down pat.

Prayer: Thank you, may I have some more?

2004-09-10T09:39:00.000-05:00

Early in this journey I told my priest that, after many years of not thinking too much about "the devil," I had cause to wonder where doubt and fear come, from since they certainly were not from God. He told me that the devil goes by a lot of names, one of them being "doubt," and that when confronted by him that way, to look him in the eye and say, "Do you know how many people are praying for me right now?"

To everyone reading this, thank you for every prayer for me, Margaret and Martin. Not only does God listen to and answer prayers, they are, for me, a major weapon in the daily struggle with doubt and fear.

In the whirlwind

2004-09-09T06:16:00.000-05:00

Although the purpose of this blog is to keep friends and family up-to-date as to my health and well-being, I think a good place to start is back at the beginning with the story that sets the theme for everything that has happened since.

The last weekend of September, 2003, we went camping at Lake Lurleen State Park for Martin's birthday. Thinking I had inhaled too much campfire smoke, it was then that I first noticed my breathing felt funny. This odd sensation persisted through October, but I dragged my feet on going to the doctor as I didn't actually feel bad. But then it turned into a cough that wouldn't go away, and so finally, on Margaret's birthday, November 6, I went to see my physician. He took a chest X-ray and didn't like what he saw.

Thus began a series of tests that took up much of November and made for a very scary few weeks. I spent much time deep in prayer of the "Lord, let this be something besides cancer," type. Describing "answers" to prayer can be tricky, but I can only say that I felt as though God had his arm around me, saying in effect, "I am with you, but the news is going to be bad." I asked Margaret if I was being negative -- people repeatedly told me I had to be positive, positive, positive.

At last, Margaret and I found ourselves in the oncologist's office where we were given the worst news. I had stage-four lung cancer, which had already spread to lymph nodes, bones and liver. Inoperable. Incurable.

We staggered out of his office, but we had not gotten out of the Cancer Center when we literally ran into a woman coming in. She was a co-worker of Margaret's who looked up at her and asked what was the matter. The woman listened and then immediately whipped out her Bible, told us that God had the power to heal us and prayed with us that He would do so. She later told Margaret that she had been trying to get to the hospital all morning, but kept being delayed. God didn't even let us get out of the Cancer Center without sending us an angel to tell us the bad news was over and the good news was here. Nor was He finished with us.

We drove home and walked around the house a bit -- unable to figure out what to do with ourselves. Margaret suggested we go to the University Arboretum and walk the dog. It was a strikingly beautiful Fall afternoon -- clear and calm with just a hint of cool in the air. We walked around the arboretum, talking a bit, but mostly just being there for each other. At last we came to the Children's Garden, a clearing with plantings and sculpture that seemed a good place to stop and catch our breath. After a moment or so, Margaret said, "look over there," indicating an area near the edge of the clearing. As I said, it was a calm day and yet a perfect little whirlwind of leaves had sprung up in front of us. Two or three feet above the ground, it spun slowly about with no leaves falling away to either side. We watched in silence for an impossible to determine length of time, until the whirlwind slowly played itself out, the leaves settling to earth. Margaret and I looked at each other -- and beganto walk again. After a few feet, I turned and we more-or-less simultaneously asked each other if we had just had the same experience. We had. God was standing there in the middle of that whirlwind.

God had previously told me that he would always be with me, no matter what. Now he had gone a step further and shown Himself to my wife and me. He is there for us in the whirlwind. Since that day, I have had no more sense that "bad news was on it's way." Instead, we continue to experience God's love, mercy and healing.