checking in - back at it

Like everyone else in eastern Nebraska, we were snowed in for a few days over Christmas, receiving in excess of a foot of snow (to add to the foot of snow from a few weeks earlier which barely began to melt). We had a very quiet day. I had a cold and it zapped my energy again. We saw family Saturday and Sunday, and that was nice. I think I am past the cold, and I saw clients today, and felt reasonably well. I find myself checking 10 day forecasts on the internet in hopes that we will warm up enough to melt some of the snow and drifts, but alas, no days above freezing in sight... I find I have become a wimp to cold and snowy weather. I guess I don't have the layer of fat to protect me that was there a year ago. Thank God we did not lose power, as a few neighborhoods did. I look out the window and see birds and squirrels...I do not know how these local birds survive Nebraska winters, but they do...

I am feeling slightly more energetic these last few days, and I hope that is a sign that my energy is starting to return. Now if only my salivary glands would wake up...

deeper than cancer - Rejoice

May God's love and presence surround us as we celebrate the birth of Jesus...may you have time to rejoice in His Love and Light and time to reflect on Him. Accept, love, forgive,be gentle with yourselves and everyone whose lives you touch...rejoice! I will strive to do likewise.

There is no perfection here, but we have Him, and we have each other...so...I'll rejoice and be glad. It's been a full year of all sorts of blessings and sorrows and pain and joy. But this is a season to be of good cheer and good will...

there is no time like right now...let's rejoice...OK?

I love you all, and wish you the most blessed and merry Christmas! Here is one of my favorite Christmas songs (for a number of reasons)...and I really like the way Enya sings it (especially the first half that is in English).

Merry Christmas...and Happy (belated) Chanukah!

checking in - mostly back on track

It has taken me another week to regain most of the (diminished) strength I had, but today I am feeling more energy and I will manage my day at the office without the need for napping. I don't know what hit me, but, I think it is behind me. What a relief. Unfortunately, I dropped another few pounds...I'll have to work on that this weekend. I was reluctant to write when I was in poor spirits, but I am feeling all around better now. Each day this week was a bit better than the previous.

I think I am coming to terms with the slowness of my recovery, and keep my expectations in check...of course, part of that process includes the recognition that there will be days I get discouraged...so I don't beat myself up too much for that. I continue to get positive reports from the oncologist, who says I am on track and need to keep pushing myself to expand my eating of food...I thought I would be more than ready to do that, but, as he reminds me...it is "rehabilitation" and thus will feel like work. All I know is that as much as I am sick of Ensure, food with texture still is unpleasant. I have some ideas for the weekend to experiment with.

I "know" more and more the reality of living this a day at a time. How many of us have said those words, and how few of us ever come remotely close to living it. I know I am closer, but still have a way to go. My anxiety comes when I start worrying about the future...my oncologist says I'll look back at this Christmas as the season of my healing and recovery...but for me...I will just strive to be present and be here today, Friday. That's what I've been handed.

PS...I do not know why certain words get highlighted and linked to other sites...I am sure it is a way for Google to increase their ad revenue...I haven't figured out if there is a way to stop that, but, believe me, as far as I know, I have no control over that. That just started happening.

checking in - a few steps forward

The blood tests all came back within normal limits which was a relief. My doctor thinks I perhaps had/have a bug. I am feeling better yesterday and today than I did last week, but not up to where I was before. I will see a few clients today, and see how it goes. I am feeling tired and run down, and I wont push it.

Thanks for your prayers...I thank God that I don't have another apparent seroius medical issue arising... God willing, I will continue to get stronger. Such a journey!

checking in - a turn for the worse

It's been a rough four days. Tuesday, I woke up feeling quite weak and a bit nauseated. It was also the day of a blizzard that left us buried under an excess of a foot of snow. Schools were closed for three straight days, something I don't remember happening before. Wednesday I was feeling a bit worse, and had trouble getting any food or water down. Thursday, Kathy took me to my GP in Lincoln, who ordered numerous blood tests. Unfortunately, it appears that the results wont be in until Monday (It's Friday afternoon and the Doctor's office closes in an hour and the results aren't back yet... unbelievable). I don't know what's wrong with me...possibly dehydration, possibly a thyroid issue... but I've done little more than lie in bed for four days and I had to cancel all my clients...I am weak and shaky and cold...how discouraging! I was beginning to eat some real food, and now I am back to using the feeding tube. Most of the day, I don't feel the energy to get from the couch to the bed.

I appreciate your prayers. I will post as soon as I know something further.

checking in- snap, crackle and pop

Today, I surprised myself and ate a (small) bowl of Rice Krispies for breakfast. It actually tasted a bit like Rice Krispies, and the small cup of tomato soup I had for lunch actually tasted a bit like tomato soup. I have enjoyed both these items very much in the past; when I was 12, I discovered that there was no legal prohibition against eating cereal at times of the day other than breakfast; one could also eat cereal for a late night snack. I believe it was Rice Krispies that provided my first late night bowl of cereal. I will take my small victory as a sign of better days ahead. Very cold and snowy today...the cold really chills me to the bone. For you non-Nebraskans (everyone in Nebraska would know this) last night the Cornhuskers lost a heartbreaking nearly huge upset to third ranked Texas in the Big 12 championship game...Nebraska had the lead with 00.01 left on the game clock, and the last second actually ticked off on the TV shown clock, but the second was restored to the clock and Texas kicked a winning field goal....owwwwww....too painful...but at least Nebraska, with its incredible defense, played with Texas throughout the game and kept it neck and neck. For you Texas readers (there are 2 or 3 of you ...thank you for reading...my silent encouragers...it has meant a lot to me) congratulations...and good luck in the national title game.

In honor of my success at breakfast, here is a classic Rice Krispies ad from the 60's

checking in - 101 posts

That's right...this is my 101st post...I think I hit a wall with #100...suddenly, this past week, I had a hard time with "checking in." I saw 4 clients a day, and did not feel much energy to do much of anything else. I am into my 8th week post treatment, but the enrgy just seems to be at a standstill. I know I need to up the intake of calories and push myself to begin eating some more food, but the motivation is not strong. Still no appetite and only the faintest taste. Food with texture (i.e. all food) is basically aversive. I hope to at least start eating more soup, but after one success with a bowl of cream of chicken, I have not ventured back...just a few more bites of jello.

I have also been almost continuously cold. No matter how high I set the thermostat, I feel cold. Today the outdoor temp was in the teens when I drove to my office, and I never had such a negative feeling about living in Nebraska...I think...how am I going to get through three more months of winter? It's actually been quite mild for Nebraska until this week, and we have been spared snow. But cold is cold. I think I am going to start annoying my clients with my electric room heater...they say "it feels good in here" when they fist walk in from the outdoor cold, but I have a feeling they start to wonder why the office is around 80 degrees after awhile. I am sure the winter is getting to me because I am not burning enough calories, and I think the circulation to my hands and feet might have been effected by treatment.

I had an appointment with the ENT doc who will read the PET scan and give me the results. We set a date of January 19 for that to happen. He told me that the radiation is continuing to work for about 12 weeks, so they want to let it get it's full effect before the final scan. So about 6 weeks from now, I will finally find out if treatment "cured" me or not. From the informal examination he did, he saw and felt no sign of the tumor, and seemed optimistic, but the telling exam is yet to come.

I have been no fun to live with. My mood is usually as drab as I feel. I just watch TV on the couch, prefering to have as close to zero activity as possible after 5PM.

I am definitely continuing with this blog at least until I get the final results in January, so be patient with me...I may not be posting as frequently as I have in the past, but I will keep updating, and I'd love to be able to write some positive news. I AM certainly further along in recovery, when I consider the big picture, and the worst is behind me, but as I wrote last time, day to day, not much changes. For now...for me...

...but not forever!

checking in -back to church and my two course meal

Today I returned to church for the first time since the middle of September...my H1N1 vaccine having had sufficient time to protect me (I'm such a coward), and feeling well enough to "mingle." I appreciated the many folk who approached me and conveyed they were happy to see me back, and I was looking well. I hear that quite a bit...I look thin, a little gaunt, but not as beat up as I often feel...so when I'm told I look well, I am taken aback...I think everyone can see my internal state of low energy, weakness, feeling cold all the time, salivary dysfunction. Getting out to work, to church, to a store, always involves such an effort, and when I arrive home, I feel quite depleted, but it staves off the despair which lying on the couch all day brings.

Another major event today...my first two course meal...I had a bowl of Campbells Cream of Chicken Soup followed by Cherry Jello. I actually had a slight sensation of taste for both, though I had to strain out the teensy-weensy chunks of chicken in the soup, and rinse my mouth repeatedly after each course. Now, my repertoire of food is up to three items...(eggs, soup and jello). I've had sips of other beverages, attempts to eat other food, but usually one sip or one small bite shouts "NOT YET." The five eggs I've eaten (poached, scrambled) have not been pleasant, but I got them down. Otherwise, it's still Ensure Plus, plus a product called Scandishake, which I ordered through Amazon.Com...500 calories, but way too expensive to order by mail, and I've not seen it sold locally.

When it comes to energy, I still naively think I am going to wake up from this one morning finding I feel noticeably better instead of taking these microsteps. I thought with a four day weekend I'd be stronger on Monday going back to work than I was on the previous Wednesday, but I can't tell any difference. It is the weirdest sensation to have a thought like "I'll get up and get that book I left in the other room" and then 20 minutes later, I am still "stuck" and trying to convince myself to move. Once I get up, I go...but overcoming the inertia of remaining motionless is challenging...I might think..."I am uncomfortable in this position" but then I must debate with myself about it.

So, onward to December...when I think in terms of months, I can see how November sure beat October, and I am sure December will be an improvement over November. Perhaps that's a better way to look at it. It doesn't jive with the "one day at a time" business, but it just worked for me; so I'll take it one month at a time.

The encouragement from family and friends continues...it got me through treatment and will get me through recovery from treatment...in church today, I was approached by a survivor of lung cancer... people who get through radiation and chemo know what it means when you say "the treatment will kill you." It really is designed to kill, and potentially being "cured" is just a side effect.

But hey, the alternative was not appealing at all.

Deeper things - Thanks to my LORD

As Thanksgiving weekend comes to an end, I will rejoice this day in the LORD...and so I offer this psalm recollecting His greatness and majesty back to Him from the deeper places of my being



Psalm 104

Bless the LORD, O my soul; *
O LORD my God, how excellent is your greatness!
you are clothed with majesty and splendor.
You wrap yourself with light as with a cloak *
and spread out the heavens like a curtain.
You lay the beams of your chambers in the waters above; *
you make the clouds your chariot;
you ride on the wings of the wind.
You make the winds your messengers *
and flames of fire your servants.
You have set the earth upon its foundations, *
so that it never shall move at any time.
You covered it with the Deep as with a mantle; *
the waters stood higher than the mountains.
At your rebuke they fled; *
at the voice of your thunder they hastened away.
They went up into the hills and down to the valleys beneath, *
to the places you had appointed for them.
You set the limits that they should not pass; *
they shall not again cover the earth.
You send the springs into the valleys; *
they flow between the mountains.
All the beasts of the field drink their fill from them, *
and the wild asses quench their thirst.
Beside them the birds of the air make their nests *
and sing among the branches.
You water the mountains from your dwelling on high; *
the earth is fully satisfied by the fruit of your works.
You make grass grow for flocks and herds *
and plants to serve mankind;
That they may bring forth food from the earth, *
and wine to gladden our hearts,
Oil to make a cheerful countenance, *
and bread to strengthen the heart.
The trees of the LORD are full of sap, *
the cedars of Lebanon which he planted,
In which the birds build their nests, *
and in whose tops the stork makes his dwelling.
The high hills are a refuge for the mountain goats, *
and the stony cliffs for the rock badgers.
You appointed the moon to mark the seasons, *
and the sun knows the time of its setting.
You make darkness that it may be night, *
in which all the beasts of the forest prowl.
The lions roar after their prey *
and seek their food from God.
The sun rises, and they slip away *
and lay themselves down in their dens.
Man goes forth to his work *
and to his labor until the evening.

O LORD, how manifold are your works! *
in wisdom you have made them all;
the earth is full of your creatures.
Yonder is the great and wide sea
with its living things too many to number, *
creatures both small and great.
There move the ships,
and there is that Leviathan, *
which you have made for the sport of it.
All of them look to you *
to give them their food in due season.
You give it to them; they gather it; *
you open your hand, and they are filled with good things.
You hide your face, and they are terrified; *
you take away their breath,
and they die and return to their dust.
You send forth your Spirit, and they are created; *
and so you renew the face of the earth.
May the glory of the LORD endure for ever; *
may the LORD rejoice in all his works.
He looks at the earth and it trembles; *
he touches the mountains and they smoke.
I will sing to the LORD as long as I live; *
I will praise my God while I have my being.
May these words of mine please him; *
I will rejoice in the LORD.
Let sinners be consumed out of the earth, *
and the wicked be no more.
Bless the LORD, O my soul. *
Hallelujah!

checking in - how I spent Thanksgiving

Thanksgiving was what it was. I spent most of the day lying on the couch with the TV on. We took a short trip south (30 minutes) to see my step-daughter Amy, her husband David, and grandkids Tanner, Rilie, Averi and Ashton on their acreage. It is always a blessing to spend time with them, and I am grateful beyond words to have such loving family. I only lasted about an hour before I felt a need to return to my cacoon and rest. It was a bit difficult to watch everyone eating desserts of many kinds, an activity I normally revel in with reckless abandon, but since I have no appetite, it wasn't as bad as it could have been. I continue to struggle with caloric intake; most days I wind up with about 1400 calories, primarily from drinking 4 cans of Ensure. Not quite enough to even maintain weight, but I'm not too big on pushing myself beyond my comfort level, even when I need to. Yesterday I thought about trying Turkey salad with lots of mayo...the texture was just too much and too unpleasant to get more than a bite down. The only food so far that I seem to be able to tolerate more than a bite of is Jello.

Watched the Huskers beat Colorado, which is always a satisfying event. Next Saturday, the Big 12 Playoff; it would take a bit of a miracle for Nebraska to play close with Colt McCoy and Texas, and I'm reserving my miracle requests for other things.

Today (Saturday) was supposed to be dedicated to gift shopping...we didn't fight the crazy shoppers for doorbusters; however, I am feeling so little energy today that the thought of walking about from store to store is overwhelming. Kathy has taken the task on herself, list in hand, as I type this. I am so thankful she is so willing to be such a help-mate, and she helps without complaint or the least bit of negativity...me, on the other hand...negativity seems all of a sudden to be on the tip of my tongue ready to be displayed to anyone who wants to hear of my woes. I usually try to hold that part of my tongue, but like everything else in my mouth...it's all messed up. (See...there I go!!!)

So, if I were grading my project to be Thankful without food on Thanksgiving...I'd get a C-. And that would be only if I were a generous grader. Lord, forgive me. Now, I am going to have to start working on my Christmas spirit! Oy, vey.

We did decide to perhaps have a Turkey dinner with all the fixins on the fourth of July. Why not? Surely by then.....

checking in - having a good day

Tomorrow is Thanksgiving, and today, I am having a good day. I've been at my office for three hours, and I am feeling reasonable energy to get through the day, and little physical discomfort. I have already consumed 800 calories (it's 1:00PM) so I may make 1800 today. My mouth has not been too troublesome.

I am thankful. The sun is out, though so is the wind. Yes, sometimes I must take the wind along with the sun...isn't that the truth. But if I just say...this sucks, it's so windy...then I do disservice by ignoring the pleasant sunshine. So to, in this ordeal. There is sunshine in the care and warmth of my friends and family...in the expressions of love I have recieved throughout this windstorm. There is the hope I hold for being "cured" and the prayers of many for me.

I thank God, and I thank you all, and I am heading for tomorrow (at least right now) with a pretty good attitude!



A segment from David's Psalm of Thanks

1 Chronicles 16:7-15

7 That day David first committed to Asaph and his associates this psalm of thanks to the LORD :

8 Give thanks to the LORD, call on his name;
make known among the nations what he has done.

9 Sing to him, sing praise to him;
tell of all his wonderful acts.

10 Glory in his holy name;
let the hearts of those who seek the LORD rejoice.

11 Look to the LORD and his strength;
seek his face always.

12 Remember the wonders he has done,
his miracles, and the judgments he pronounced,

13 O descendants of Israel his servant,
O sons of Jacob, his chosen ones.

14 He is the LORD our God; his judgments are in all the earth.

15 He remembers his covenant forever,
the word he commanded, for a thousand generations.

checking in - still trying

After last post, I've taken a several day break, partly because I felt I was failing my thanksgiving commitment. I had an under the weather weekend, and felt drained and lousy all weekend. Along with that came a return of some feelings of despair and discouragement. Being thankful seemed just beyond my grasp. I have had a slight upswing the past two days, partly because I am again at work, and partly because of a phone conversation I had last evening with a man who had virtually the same diagnosis, treatment, oncologist and course of recovery...though this week marks one year since treatment ended for him (6 weeks for me). His energy is back, he has no cancer, his appetite and eating have essentially returned (though some foods still taste funny), his saliva is partially restored, though he carries a bottle with water because he gets dry easily. He was very encouraging and kept telling me how things will get so much better over time, and I need to rest and allow the healing to take it's gradual course. That is so hard for me.

I am reviewing all I have to be thankful for, at least intellectually if not at a deeper level. There is a lot. But it is not a giddy thankfulness, and it's not eliminating this fear/discouragement that accompanies good parts of my day.

On another note, I have begin getting glimpses of taste the last few days...but to my horror...the taste of Ensure is NOT a pleasant one, and it makes drinking it harder, not easier...I tasted some fruit juice this morning, and again, it was a bit of a weird taste. I also took a bite of Jello this morning...not as bad as the other two things, but not exactly enjoyable either. I am thankful that some taste is happening; now I need to find something that tastes pleasant...and is soft and goes down easily. Any suggestions?

Did I mention I received my H1N1 vaccine last Thursday through the local health department who considered me to fall into the "High Risk" category? Now...I have to wait about another week for it to fully be in effect. It's a relief, though, to be vaccinated. One less thing for my "fear" list.

If I don't post again before Thanksgiving...(I hope to)...have a blessed Thanksgiving full of good fellowship, food and the presence of our gracious God.

Psalm 100

1 Shout for joy to the LORD, all the earth.

2 Worship the LORD with gladness;
come before him with joyful songs.

3 Know that the LORD is God.
It is he who made us, and we are his people, the sheep of his pasture.

4 Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.

5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

deeper things - Thanksgiving

I had naively believed that since my radiation/chemo was complete on October 14th, I would be ready to chow down, if not by my birthday (Nov. 5), than surely by Thanksgiving... well, beyond one egg and a few bites of pudding, both equally tasteless and unpleasant, I have yet to make it beyond a bottle (of also completely tasteless to me) ENSURE. So...this year, I must postpone eating a Thanksgiving banquet, but NOT the Thanksgiving...I have tears in my eyes as I type this...God has given me an opportunity to focus on the "thanks-giving" part of this holiday, instead of the food-feast...never before, (and God-willing, never again) will that be the case. Yes, dear Steven, what an opportunity...I'll have Turkey, Pumpkin Pie, etc. next year...

BUT THIS YEAR...I WILL SIMPLY FOCUS ON GIVING THANKS!!!!!!

Without my mouth-watering...without one eye on the mashed potatoes and sweet potatoes and dressing and pie and cranberry sauce...just striving to keep my heart on being thankful...and...yes,I feel like I've been through hell, but that does not diminish all I have to be thankful for today...

I think I can pull it off...I am going to practice daily this week so that by Nov. 26 I'll be in shape. No self-pity, (or at least, not much self-pity) and no regrets...just a prayer of thanks in my heart...to God, for blessing me so abundantly with so much! I couldn't begin to adequately thank Him for all He has blessed me with...here...this prayer captures it better...

... a prayer of thanksgiving:


Though our mouths were full of song as the sea,
and our tongues of exultation as the multitude of its waves,
and our lips of praise as the wide-extended firmament;
though our eyes shone with light like the sun and the moon,
and our hands were spread forth like the eagles of heaven,
and our feet were swift as hinds,
we should still be unable to thank thee and bless thy name,
O Lord our God and God of our fathers,
for one thousandth or one ten thousandth part of the bounties
which thou has bestowed upon our fathers and upon us.

~from the Hebrew Prayer Book

checking in - good day sunshine

It was a good day on several fronts...

The sun came out for the first time in several days...it felt good to stand in the sunshine. It looks like the weather will be decent through Thanksgiving. NO SNOW and not that cold for this time of year.

I saw four clients and had enough energy at the end of the day to go home feeling pretty good.

I drank 5 bottles of Ensure plus...no taste...but they went down fairly easily...1750 calories!!!

I got through the entire night without having to get up to rinse my mouth out for the first time last night.

I had two or three bites of vanilla pudding this evening...tasteless, but again, it wasn't painful.

I was encouraged by a thoughtful e-mail from Ted Kooser...he finished radiation/chemo 11 years ago at the end of August and was able to eat and mildly taste Thanksgiving dinner...12 weeks...but it puts it in some perspective...

I am now 5 weeks post treatment...time is starting to pass a bit more quickly.

I am thankful for this good day.

checking in - slowly

Slowly is how it is going. I continue to see 3 clients a day, but that is difficult and that wears me out. Restoration of my energy level just seems to be at a standstill. Walking a block is about all I can do, and if I push it a little, I pay for it. I don't know how I walked a mile a few weeks ago, but I don't have that energy now. I am drinking Ensure, and I struggle to get 5 bottles consumed daily (1750) calories. More often than not, I only make it to four...(1400 calories) so I have not put back any weight. I am sleeping 6 hours a night, and thankful for that. I originally pictured myself eating a big Thanksgiving dinner, but, at this point, I still have no appetite, no taste buds, and eating(drinking) makes me feel worse. Water burns my tongue. I choked down a plain poached egg this morning, but it was a very unpleasant experience, and left me not wanting to eat any food again for awhile. I have learned to tolerate Ensure, and that's about it. Kathy made some Vanilla pudding for me, so I will try a spoon of that this evening. I mixed a Banana in a bottle of Ensure, but that, too, badly burned my tongue...I can't figure that out.

I struggle at times with feeling any sense of purpose right now and lying around is not conducive to feeling meaning and value. As you can tell, today I am feeling discouraged. I have better days than this, but then, back down I go. It's still a roller coaster, though I am much further along than I was a month ago...By the way...it is now one full month since I completed treatment...where is the energy????? where are my taste buds??? where is my appetite??? where is the return to normalcy for my salivary glands????

Where is the H1N1 vaccine?????

I watched about 30 hours of football this weekend (the Huskers beat the Jayhawks) ...tonight...more TV...I must watch Iron Chef to see what they are cooking up for Thanksgiving in Kitchen Stadium.

deeper things - maybe

I have been so tossed around by the storms and waves that I have almost completely taken my eyes off Jesus. I forget who calms the storm, whose power is ultimate and who, even when the storm is raging, is in control. Well, today, a few reminders crept back in to tap me on the shoulder and nudge me to pay better attention. Not that I feel that good physically, not that I am past the depression, not that I don't at times get overwhelmed by fear...but maybe, just maybe, I can find a way to let His embrace surround me again. Today I stumbled on this poem which, though I had the book (House of Light) sitting on my bookshelf, I can't recall ever reading before. Maybe, in the midst of my own frequent exhaustion, I can again open my sleepy, slumbering heart to Him.


Maybe
Mary Oliver

Sweet Jesus, talking
his melancholy madness,
stood up in the boat
and the sea lay down,
silky and sorry.
So everybody was saved
that night.
But you know how it is

when something
different crosses
the threshold -- the uncles
mutter together,

the women walk away,
the young brother begins
to sharpen his knife.
Nobody knows what the soul is.

It comes and goes
like the wind over the water --
sometimes, for days,
you don't think of it.

Maybe, after the sermon,
after the multitude was fed,
one or two of them felt
the soul slip forth
like a tremor of pure sunlight
before exhaustion,
that wants to swallow everything,
gripped their bones and left them

miserable and sleepy,
as they are now, forgetting
how the wind tore at the sails
before he rose and talked to it --

tender and luminous and demanding
as he always was --
a thousand times more frightening
than the killer storm.

checking in - a few good days!

Actually, three of four good days...Friday, Sunday and today (Monday). Saturday was a little rough, and I felt run down and uncomfortable most of the day, and needed some meds to get through it, but the day was helped along by a Nebraska Cornhusker victory over Oklahoma which made the evening better...if you are a Husker fan, no commentary is necessary...if you are not...no commentary is needed.

I saw clients today and it is after 6PM and I still feel a bit of energy. That's good. My mouth has co-operated for the most part, and I drank two bottles of "Ensure" today which went down fairly easily, though still no taste. I tried one individual piece of Ziti pasta yesterday, but that was a failed experiment. It was too distasteful, and I couldn't bring myself to try another piece. I absolutely love anything pasta and marinara, and I don't want to associate it with a bad taste. I bought some Farina...but as yet, I am just looking at it and it back at me...neither of us is making the first move. I long for a little sweet taste and I might try some pudding or yogurt this week regardless. It could be months before taste buds kick start back into gear. Isn't it odd what can become such a big deal... whoever is reading this...give thanks for those little taste buds...you have taken them for granted all your life, haven't you? Shame on you! Right NOW...STOP...be grateful for the wonderful taste of food that you eat. We spent two hours watching the food channel last night...(Iron Chef). Ironic, but the food channel is my substitute for being able to enjoy food.

My schedule is filling up...I am limiting myself to three or four (max) clients a day, and that is working out. Tomorrow is my first day with four clients scheduled. I have to discipline myself not to exceed that limit for another month or so.

Now that I am feeling a little better, I may start posting a few poems and other thoughts again...when I was feeling my lousiest, everything that was once enjoyable became depressing.

I appreciate this good day.

checking in - OK, maybe a tincture better

Well, I have gotten a consistent message that maybe I am doing better than I am giving myself credit for, and that I need to recognize and appreciate how far I have already come. I guess that's true. I also need to allow the healing process to move at it's own pace, and not push it too far too fast. That's true, too. I really get frustrated at just how little energy I have...until one experiences it firsthand...it is hard to describe. I knew what it was to be worn out after a day of work or running around...but don't think for a minute that someone who is worn out from radiation treatment feels that way...I promise you, it is qualitatively different. I sometimes get disgusted with myself for my lack of faith and trust, and I know I am so much more at peace when I can leave things beyond my control in His hands and simply accept that this is where I am today, and that is how it is...and just rest in Him. As my body is slow to heal, so is my spirit and my emotions...I still have some depression I struggle with. I can feel it on the edges of my day...lurking there, even when I feel OK. Beautiful weather like we had today definitely helps, and keeping somewhat "busy" with working several hours each day makes a huge difference as well. I see that I do so much better when I get my mind off of my cancer and recovery. That creates a little bit of a problem with this blog...I am not sure yet how to resolve that. I woke up around 4AM this morning and had difficulty getting back to sleep...those are some of the most difficult times to get through, though, again, that is so much better than being awake and unable to sleep throughout an entire night. Oh, let's change the subject. If you read the comments yesterday, you know it was my birthday. It was low-key...and that is how I wanted it to be. I am going to have a piece of birthday cake as soon as I can enjoy one, and I am NOT going to wait a whole year...and I thank you all who remembered my birthday and wished me well. Being remembered really matters, whether it's a birthday, or just a small nod of affirmation. It's so much the little things, and the "little" things are often so grand and glorious.

OK, I am a tincture better today, and I thank God for that...onward!!!

checking in - oy, can't it be a tincture better?

I think that for the last three days I have hit a plateau. Each day has been fairly good, but each evening I have worn down early. I saw clients again today, and that went well, again, (I give thanks for that) , but then I get home and I feel exhausted and physically shot. So my evenings (5:00-10:00PM) haven't been so hot. Since the previous week was a week of noticeable progress, it is a bit discouraging to just be standing still for the past three days and to feel lousy during the evenings...However, as I write this I realize I must keep this in perspective...so

Here is the good stuff:

I have been sleeping well.

I have been able to see clients.

I have not been physically sick to my stomach.

I still have Kathy and family support.

I believe God is still with me.

I have had more contact with friends, and that has been so uplifting.

I still get incredible encouragement from comments on this blog.

I have been able to drink a bottle of "boost" each day (just one).

I have been able to get out of the house to go to my office, stores, and for short walks.


Here is the not so good stuff

I am just barely maintaining weight and hydration...when I have a liquid can or bottle, I always feel worse for a while. I am barely able to get 1400 liquid calories down a day...I should be doing around 1800-2000. My weight has dropped from 162 pounds pretreatment to 139 pounds today.

I have an awful bad taste and have either bad saliva (or no saliva) in my mouth all the time, that I can't shake.

I get worn down and worn out very easily.

I still am needing a dose of hydrocodone each evening.

I have no taste buds, and it is still difficult (painful) to swallow.

There it is. I shouldn't complain as I am miles beyond where I was two weeks ago. When I think back on where I was a month ago, it is almost too painful to even imagine that I really went through all that.

I still want to and hope to and strive to (at times) live this word, and it doesn't sound as if I am doing a great job, just at this moment...

GRATITUDE

checking in - hi ho, hi ho, part 2

Off to work I went...and it was a good, though surprisingly draining 6 hours...I wisely gave myself an hour between each of the three clients I had scheduled. It was great to get my thoughts and focus off myself, and I was so happy to be working with clients again. I say surprisingly draining, because I didn't think I would wear down sitting in a chair doing therapy...but, when the six hours were over, I was needing to get home and regroup.

A good day, and looking forward to repeating it tomorrow!

checking in - hi ho, hi ho

it's off to work I go.

I can't believe how excited I am to return to work...not unlike how one feels after waiting months for a vacation to begin...it makes me realize just how important being productive is. I will have some difficulty with dry mouth, but otherwise, I think I will be OK seeing three clients today.

Yesterday was a really good day...I had a visit from some friends I used to work with at the Lincoln Regional Center, I spent an hour or two at the office doing some odds and ends, and had good energy. The weather was nice and I spent some time outside as well. A very good day.

I am drinking Boost for about half my meals, and yesterday, I was able to sip on water as well. The water tasted just like Boost, which tasted like nothing. But at least the unpleasant taste is diminishing. I long for the day some taste buds begin to show up on the scene.

Perhaps I will check in again to update my day later on this afternoon. That's it for now.

checking in - endurance

Continuing to travel the road to recovery. The last few days have been good, though nothing remarkable in terms of gains. Probably the best thing today was for the first time, I drank a whole bottle of Boost, and I can say that without having to put quotations around the word "drank." Sadly, there was no taste, but it was tolerable enough that I will now try to drink at least one or more cans of food a day. My meeting with my oncologist focused on swallowing recovery. He indicated it is time to start rehabing my swallowing, starting with thicker liquids like Boost...water and solid food will come a little later. I am anxious to recover some taste buds, but that is too individual a process for him to have any predictions. I have cuts on my tongue which make liquids (especially anything acidic) painful; the pain of swallowing is there, but that is more manageable. I have a product called "Magic Mouthwash" which numbs my tongue and mouth; I take that a few minutes before drinking, and I don't feel a thing.

I continue to sleep through the night, thank God. Last evening, Kathy and I drove over for a short visit with friend Cindy...it was nice to get out and nice to see Cindy (a mutual friend who introduced us 16 years ago.) Getting out of the house for something other than appointments in Omaha is therapeutic, though I worry that I'll have some symptom issue as soon as I am out the door.

I have clients scheduled beginning next Tuesday; I am really counting on continuing to make some gains between now and then; I am planning to see 3 clients each day from Tuesday to Friday. That is a very big deal to me...I pray for the endurance and strength to speak without my mouth totally drying out...right now, I would last about 30 minutes I think. I'll have to practice therapeutic nodding...

For you readers outside of the "good life" we live in Nebraska, we in eastern Nebraska have been spared an early winter...there are already parts of western Nebraska that have received 30+ inches of snow in October and this already exceeds their annual average TOTAL snowfall for the winter...we've had a lot of rain in Lincoln and Omaha, but oh, how thankful I am we've been spared the snow.

I must practice enduring the slow but steady road...I wake up in hopes that there will be huge progress overnight; it's not always that great...then I think back to how sick I was, and I realize I have already come a long way on this road. Some of what I went through already seems like a nightmare that I couldn't possibly have managed.

I never nap during the day, but I start to fade around 8:00PM. Tomorrow, I hope to help Kathy a bit raking leaves...raking is one of the yard chores I sort of enjoy...I love being able to really see the yard again appear from under it's blanket of leaves. I know, I know, go easy and don't overdo it...

GRATITUDE

checking in - Oh, blessed relief

I have to hand it to the oncologists...they were spot on with predicting that the "turnaround" would really begin at the end of the second week of recovery or the beginning of the third. Tomorrow ends week two of recovery, and each of the last three days I have felt noticeably better. I feel more energy, less pain, and several mouth and throat symptoms are improving. I slept through the night last night, with only two brief periods of waking of about 15 minutes each. My mood is improving as well, and today, I caught myself singing along with the radio as I drove to the store. I haven't felt like singing in a long long time...

I feel such relief...and I am so thankful for it. Thank you God. Thank you all for praying for me through this. Thank you doctors who had a hand in this.

I have quoted this verse before in some post, but I've been thinking about "the waiting" part of this ordeal, and how that has vacillated...

"THEY THAT WAIT UPON THE LORD SHALL RENEW THEIR STRENGTH..." ISAIAH 40:31

I have waited, I have waited, I have waited...and I wait... through this ordeal... but the waiting vacillates in such extreme ways...

1. A good deal of my waiting has been adrift in a sea of discouragement and fear...that is an awful way to wait, and it is so far from waiting "on the Lord." I know there are people who endure extreme pain and never take their eyes off Him... I so admire those people... unfortunately, that was not my experience, but perhaps I am growing in this area. I pray that I would keep growing here.

2. Waiting with some sense of hopeful expectancy and trust. That's what I feel today...Is it just that I am feeling better and therefore, it is easier to have a renewed sense of hope, or is something else happening on a spiritual level? I don't know for sure. There is such a difference in these two states of waiting. I suppose it's never black or white, and waiting itself falls along a continuum of waiting "in the Spirit" and waiting "in the flesh."

Now I have another wait beginning...about a three month wait for a PT scan that will see if all the cancer has been killed off. I don't think there is much I can do at this point to impact the outcome, in terms of my choices, but I know it would be wise to strive for the #2 kind of waiting. Also, I can't afford to allow myself to dwell too much on the future, rather, I need to continue learning to fully appreciate each day and each blessing as it comes. I wont dwell on that scan too much here, for it will make everyone including myself sick of hearing about it.

I also wait for the day when I can again eat and drink the way we are intended to.

I saw a good friend yesterday, who I hadn't seen in 8 months, as he was working in Chicago...seeing him was a breath of fresh air. A visit last evening from my stepdaughter Amy and grandkids Tanner, Rilie, Avery and Ashton topped off a lovely day for me. They are all such immense blessings.

I write with hope and thankfulness for the day. I feel more alive, more energy, more reason, more sanity, with a tincture of joy on the horizon.

checking in - such a good day...

...all things considered, today was by far my strongest and most symptom free day. I slept well last night, which I am finding, has more to do with the outcome of the day ahead than I had ever realized. I felt more energy getting out of bed than I have had in at least a month. I was feeling so good, I tried a few sips of milk, but I am not ready for that yet. A little disappointing. (The other disappointment of the day was the performance of the Nebraska Cornhuskers, but that's a whole other issue.) After the game, I drove to the library, stopped at my office to check mail, and drove home. I then took a walk around the block, another first...it's been probably around two months since I've taken a walk...it felt really good; it was a cool, misty, autumn day...the leaves have never looked more beautiful. It's around 6PM and I have not had a physical let-down yet for the day. Overall, I feel qualitatively better today than I have up to this point. So, I rejoice and give thanks for this day. My mood has improved considerably.

checking in- in the right direction, at a snail's pace

The last two days have been generally marked by slight overall improvement, but with ups and downs. It is still a half a week early for "noticeable" gains, and so I try not to let a few good hours color my expectations...invariably, part of the day is marked by feeling weak, sick, and miserable. I hate this word, but the "mucositis" is the most difficult symptom to live with right now, and it is what keeps me up a good part of the night, wearing the carpet out back and forth from the bed to the bathroom. I feel an almost continual need to...spit...and the relief only lasts a minute or two...then it's back again. TMI...sorry. But today, for the first time, I have been able to swallow with only moderate, not excrutiating pain. The swelling must be going down in my throat...that is a good sign. I was able to put a few ice chips in my mouth for the first time. Not that the terrible taste didn't still permeate that, but I was able to tolerate it. Who knows, food and drink may be on the horizon. I am also using less narcotic and a smaller patch for the last few days, and so I have felt more alert.

The sitting at home all day is really wearing on me... if i felt the energy to "do" something...anything...it wouldn't be so bad...but that energy is just not back yet. So I feel bored, lonely, isolated and the "D" word. Our cat Simcha sleeps all day under the bed...it is not as good a life as I once thought. She comes out around 4PM and starts paying attention to me for her 5:12 feeding. (Yes, 7:00AM, 5:12PM, and 9:12PM) She has an amazing internal clock. When Kathy comes home, both Simcha and I feel much better.

I want so much to get to the point where I am writing about the great day I had and the food I ate, and the enjoyment of returning to work...for half-days at the start...I know those days will arrive, like I know a snail eventually gets where it's going.

checking in - feelin' better

Today makes one week since my completion of radiation...I met with my oncologist and he again told me that this past week and this week in front of me were typically experienced as badly as the prior two weeks. He said the two weeks following this coming week (i.e. the first two weeks in November), should be marked by dramatic improvements. In spite of that prognostication, I slept better last night, and today I felt quite a bit better and stronger than I had been feeling the last few. I did some walking around in Omaha with Kathy, as we had several hours between appointments, and I know I would not have been able to do that last week. So I will take it as a good day, and be thankful for it. I'm not going to make predictions again about what tomorrow might bring, as I have learned more than once that that is setting myself up. But I am feeling pretty good right now. I have cut back on the narcotic patch and, again, the oncologist was surprised to see that I was not having more difficulty with pain control. Anyway, a good day, and a better mood. Today I daydreamed about how good a sweet juicy orange tastes...oh, that sounds like heaven.
I can't hardly believe I could someday get to enjoy that again.

This is a marathon and not a sprint. Having never run a marathon, (nor a sprint for that matter), it's all new to me.

checking in - still bouncing along the bottom

Well, perhaps I let a better day deceive me again...the oncologist did tell me the first week or two after radiation would be as rough or rougher than the last week or two of radiation...and today is rough. I did not sleep well, I am having mouth and throat and saliva issues, and feeling quite weak again. Tomorrow completes my first week post radiation.

I find I am fighting as much emotionally and spiritually as physically...I lie around during the day without the energy to get out of bed, and feel lonely, depressed and distant from God. I begin to wonder if all the things I wrote in the blog I just wrote because they sounded good...did I really feel that connected to God?...why don't I have any desire to pray or meditate or read the Bible or read anything at all for that matter? Will this trial ever end? Intellectually, I can be rational with myself and tell myself that in the next week or two, I will begin to improve and everything wont seem as dark as it does right now. But, that is just my intellect, and to be honest, things seem dark right now.

I did have a good few hours yesterday...it was gloriously beautiful outside, and I sat in the backyard for a half hour or so and enjoyed the sun and the colorful leaves and birds and squirrels at work. Be thankful, for small things.

checking in - bottoming out and heading up

I must say, the last two days were like a two day nightmare. Yesterday, I felt more dead (how does that feel?... It feels just like I felt yesterday! ) than alive, and all systems were haywire. Terrible; everything that has been bad all happening at once. So, the good side to that was that I am considering that to me my "bottomed out" day. I slept periodically during the night, but nonetheless, slept. When I got out of bed, I felt better than yesterday, and I have a little more energy, less symptoms, and am more "with it." And why should not every day be a little better from here on out? I have no known reason to think things should get worse again...and since my body is not being exposed to chemo or radiation, why should it get worse? I am pleading with God that this be the case. Along with feeling so bad, I really felt depressed all day yesterday, like...feelings of hopelessness and helplessness type depressed... But, again, today, my spirits are lifted. I can walk from room to room without feeling like I am either going to pass out or be sick. So, when I say I have more energy, I can walk around the house (indoors) and feel no worse upon my arrival in one room than I did my departure from another.

I am feeling so grateful for these little gains today, and I am feeling like I can again look forward to each day henceforth as a day of increased recovery. I hope my renewed optimism is not unrealistic, and still I can't imagine yet the day coming when I will be able to drink or eat again, but it's coming. I remember not that long ago writing that each day does not predict the next, but that was in the midst of treatment...now, in the midst of healing, I am letting my hopes rest that the days will progressively get better, or at least not get worse again. Oh, may this be the case.

I couldn't face the blog yesterday, but was anxious to report today that I am feeling better. Thank you all for your encouragement and empathy. I'm feeling better today!

checking in - again, reality sets in

So as to not get too cocky about being "finished," with treatment, yesterday I was handed my worst day, physically, yet, and today has been rough. Yesterday, I could not keep any cans of liquid food down, and got sick a number of times during the day. Today is only a little better. I am coughing up bad stuff...and very weak. The oncologist warned me that this would be the worst week, even after treatment subsides, and I guess he was telling the truth. I just need for time to pass so that my body gets the message that the radiation has stopped...and the burning has stopped. Then, healing can begin; for now, I am feeling quite weak.

I woke up at 2:30AM and have been up since. Since I feel so poorly, that makes for a very long and slow day. I am still very happy about being done with radiation, but I guess, at some level, I wanted to believe that things would start getting better right away, and that is just not the case.

In a few days...I can't wait...the pain and nausea will subside; I just need to be patient with this suffering. I still have a voice, weak as it is, and I still have a life. Friday night...hmmn... I am ready for that to mean something again. I am on a hydrocodone "patch" that has me groggy, though, it's hard to tell how much of that grogginess is just lack of sleep, and how much is the drugs.

we are all disappointed...we are all waiting for this to get better...we are all tired of waiting.

checking in - a window full of acorns and pine cones

RADIATION DAY 35 OF 35!!!!!!!!!!!!!!!!!!!!!! PRAISE GOD!!!




YES, YES, I AM DONE WITH THAT INSANE TREATMENT.







Here are 4 pine cones, representing 4 days of radiation & chemo together
and 31 acorns, representing 31 days of radiation alone. 35 days that felt like 35 lifetimes.

What I was sure would never come to an end has just come to an end!

I am VERY happy about that (yes, you CAN be happy and miserable.)

I am miserable in my body...and the oncologist told me to expect no meaningful change for at least a week, and not much noticeable change during the second week, but week 3 of healing I should NOTICE a difference, and then make some rapid gains from then on out until the healing is complete. He told me it is not unrealistic to expect a total "cure," but the final PET scan is not done until January, and at that point, we will know for sure.

I am feeling such relief...now, I just need to keep everything going (meds, fluids, nutrition, rest). He wants me to start sipping on Boost...he said to take an extra dose of Hydrocodone,and then wait a half hour, and take a sip or two...maybe I will do that tomorrow...today, I am going to NOT do anything that causes more pain.

Thanks to all of you hanging in there with me. I will keep checking in, and, God willing, the posts will not be so miserable. There have been days that I hoped no one would read the blog because there were some really discouraging days when I just didn't feel like getting out of bed...but I wanted to be honest with what I was going through, and for the most part, I think I've done a reasonably decent job at that. There have been moments of tremendous gratitude and love as well, and there, too, I think I've done reasonably well reflecting that in what I have written. Now, it's time to spend the rest of the day relaxing and reminding myself that I don't have to go back to Omaha in the morning!

I was asked if I want to take home my radiation "Mask"...Kathy reminded me this is a "G" rated blog...so I can not say the exact words I used, but the answer roughly translated to..."no, thank you, I would like never to see that piece of equipment again."

the deepest thing - my song in the night

Here is the verse that has gotten me through this past seven weeks...at the core...the love and support of family and friends has been the deeper thing...and the knowledge of Him and His love and support has been the deepest thing. My strength and my heart...I love you all...and I love Him, my "heavenly Friend."

"...I have learned the secret of being well-fed and of going hungry, of having plenty and being in need. I can do all things through Him that strengthens me." Phil 4:13


Here is the song that will get me through the next 48 hours...read along, as the lyrics are provided. If you happen to be up around 3AM, listen carefully...if you hear it on the wind...I will be singing in my heart...

checking in- getting closer

radiation day 33 of 35

So day 33 didn't start out so well; I "fed" myself a can of liquid food (Jevity...like Boost)) at 7:00AM, got sick at 7:30AM, and had to leave for Omaha at 7:50AM. I've described before the particular horror of getting sick these days, so it was a lousy way to start the day. I was in pain, and really bummed. I was actually quite worried about getting sick again whilst my face was entrapped in it's radiation mask. But I got through that, slept on the drive home, and am trying to keep myself medicated and under control.

I am so ready for the next two days to be over. There's not many numbers left to crunch...two...one...done! Then, I will plan on no improvement for 4 days (I just picked a number), then, I want, hope, pray, that my salivary glands get some kind of message that the war is over, and they can stop manufacturing whatever it is that has replaced saliva and is making me so sick.

I have nothing scheduled but rest and recovery until November. I am planning to start next week with a walk around the block and sort of try to begin building back some strength. I don't really know what to expect...I talk with my oncologist again on Wednesday after my last treatment. I don't really know much of anything...my life has slowly come to a full stop.

So...tonight and tomorrow during the middle of the night, when I am awake and anxious...here will be my song...no...no...not here...I will put in on another "deeper things" post by itself.

I can't hardly believe I am this close to finishing radiation.

Deeper things - gratitude stew

My soul is satisfied as with a rich feast,
and my mouth praises you with joyful lips
when I think of you on my bed,
and meditate on you in the watches of the night;
for you have been my help,
and in the shadow of your wings I sing for joy.
My soul clings to you;
your right hand upholds me.
----- Psalm 63:5-8

I woke up today around 5:30...my first thought was...hey...I slept! I last remember reading around 11PM, and I didn’t remember waking up at all during the night, though that seems unlikely. I took a few hours to lie in bed before getting up at 8:00. I started thinking about, what else...food...but then my thoughts drifted toward things other than eating...I started thinking about God and all I am grateful to Him for. Having a few hours (often more) in bed to think over the course of each night has become a daily ritual. I think, pray, read, but mostly I just think. Since I wont be eating for awhile, I thought about creating a different sort of meal...I had this idea this morning that each day I have an opportunity to create a kind of soul-meal...completely unique, completely new... each day...a gratitude "stew" for the soul...adding ingredients throughout the day, letting it all sort of simmer and send up a beautiful aroma.

There was a time I would have thought getting up at 5:30AM on a Saturday morning was robbery...of sleep. Now, it felt like a gift...of sleep! Same event, different perspective.

I also woke up with minimal pain...add that right away to the stew, as it will only last a short while.

No trip to Omaha today...instead...I can open the window shade and watch the beautiful sight of the sunrise (somewhere under the clouds) on the season’s first October snow (an inch or so) fresh on the pine trees and fence posts. Right in you go, beautiful morning.

Today friends Jeff and Lina are getting married...actually, as I type this they likely just finished the ceremony and are now heading to the reception...I don't have it in me to make it ... but I am happy that Kathy is going...they are a great couple and they will have a great life together...all the best, friends!!! Somehow, you have found your way into the stew....I think the metaphor is starting to break down, now that people are floating amongst the veggies, snow, sunrise, and a good night sleep.

Here is a poem I love.. it captures the small things that (if we allow ourselves this vulnerability) daily, we can fall in love with.



Aimless Love

This morning as I walked along the lakeshore,
I fell in love with a wren
and later in the day with a mouse
the cat had dropped under the dining room table.

In the shadows of an autumn evening,
I fell for a seamstress
still at her machine in the tailor’s window,
and later for a bowl of broth,
steam rising like smoke from a naval battle.

This is the best kind of love, I thought,
without recompense, without gifts,
or unkind words, without suspicion,
or silence on the telephone.

The love of the chestnut,
the jazz cap and one hand on the wheel.

No lust, no slam of the door –
the love of the miniature orange tree,
the clean white shirt, the hot evening shower,
the highway that cuts across Florida.

No waiting, no huffiness, or rancor –
just a twinge every now and then

for the wren who had built her nest
on a low branch overhanging the water
and for the dead mouse,
still dressed in its light brown suit.

But my heart is always propped up
in a field on its tripod,
ready for the next arrow.

After I carried the mouse by the tail
to a pile of leaves in the woods,
I found myself standing at the bathroom sink
gazing down affectionately at the soap,

so patient and soluble,
so at home in its pale green soap dish.
I could feel myself falling again
as I felt its turning in my wet hands
and caught the scent of lavender and stone.

~ Billy Collins ~

checking in - seeing some light

Radiation day 32 of 35


I am beginning to think I am going to get through this, and no matter how miserable I may feel, it is just today; the light looming ahead is huge. Actually, I think I am coping with the misery pretty well today. No trips to Omaha until Monday, and then, only three more days of radiation. Wow. I am trying to keep my meds ahead of the pain, and it's been a bit better in that regard.

It was a fun football game last evening (at least the fourth quarter) and the night before, a fun Nebraska volleyball game was televised. And we are in baseball playoff season...our team (the Cubs) will have to wait another year. We are going to root for the Twins. Of course, I am also coming to the realization that I probably will never play professional baseball. Actually, truth be told, my present illness is just an excuse...I probably wouldn't have made the pros even if I had stayed healthy...you don't see many 57 year old Rookies these days. But...I can still wonder...what if....

I remember playing softball on the street in front of my house growing up with some kids from the neighborhood: Arthur, Bob, Glenn, Jimmy, Ralph and myself. NO one had ever hit the ball over the top telephone wire straightaway center (which, by the way, straightaway center is about the extent of the field when you play on the street.) The street also was the entrance to the Wantagh Parkway, which took people to Jones Beach and the ocean....which meant about one pitch and then three cars passed before one could throw the next pitch, but we would play for hours. Well, this particular day, I was standing in the outfield, and Arthur finally did it...he connected like Mickey Mantle, and launched a high fly ball well over the top phone wire...which meant it carried on a fly into the woods next to the Parkway entrance...I ran into the woods with my back to Home Plate (a piece of cardboard) and with my glove extended out in front of me...(to keep from running into trees) I blindly ran to where I thought the ball would come down...and Voila...pure luck...the ball came down through the trees and landed in my glove as if it were done with magnets and special effects. I thought Arthur might come after me with the bat. But secretly, years later, I saw a tape of Willie Mays making the same catch, but he didn't have to deal with trees in the outfield. By then, though, I realized I was going to play second base on the Mets, so I wasn't all that excited. Of course, I never played Little League, or school sports, so my life as a Major League ballplayer was pure fantasy. Replaced a few years later, by my realization that I was going to be the next Bob Dylan. I didn't know how I would pull off two careers of such fame and notoriety, but...I could do concerts in the off season, and play for the Mets and record studio albums during the regular season.

When Bob Dylan became a Christian in late 80's or early 90's...I realized...after all these years, wouldn't you know it, he was trying to steal my life!!!

I am feeling grateful again, and marching...well, at least crawling...toward the finish line.

checking in - you KNOW you're tired when...

Radiation day 31 of 35

...you fall asleep standing up while brushing your teeth.

Yes, a new lesson learned. The last pill I could take orally was Ambian...a sleeping pill. It was small, but swallowing it has become very painful, so I stopped taking it orally. We got a pill crusher and mixed it with a little water, and I shot it into my stomach. The lesson learned is that that needs to be the very last thing one does for the evening. I, on the other hand, decided to take the sleeping pill before brushing my teeth. I then went into our bathroom, and apparently (I have no recall), Kathy, who was also getting ready for bed, looked over at me and I was asleep with the toothbrush in my mouth, standing in front of the sink, drooling like a baby. I had no idea that one could actually fall asleep standing up, and pretty much stay asleep as I was helped into bed.

So, that about sums it up. Pain and fatigue. It will be a long weekend. But it will be the last weekend, on this side of radiation. Then, praise God, three more days next week and I move into the next phase of the journey. I don't have good days anymore, but occasionally, I have a good hour. And, every good hour means another hour less of this left. I don't think I have any good ideas anymore either, so these posts are becoming repetitive and boring. I feel like apologizing. I know that is silly.

I am really quite sick and fed up with all this, if you know what I mean. Enough is enough. Yes, I know, just a few more days. Self-pity is soaring today to hights of grandeur. I think it might be at record levels. Call Guiness. This may be my way into that book (I thought I might be able to set the record for eating the most Marshmallow Peeps in an hour, but this would be a sure thing.)

Nebraska football tonight...I'll watch and try to lose myself in the game. Sitting down.

checking in - more meds

radiation day 30 of 35

Finally, I can say...ONE MORE WEEK...then, though the burning will persist, no new damage will be inflicted, and healing will be a slow steady process. The oncologist upped all my meds, including adding a "patch" of narcotic, which will be upped to 2 or 3 patches worn simultaneously. Not to replace the hydrocodone, but to add to it. He also had several suggestions to make this week more bearable. It is a full time job just keeping all the meds straight and getting hydration accomplished. Kathy has written out a complete schedule.

I am fairly well miserable...again, today. The oncologist stated I am one step beyond the normal level of beaten up at this point, though, he said, that could be worse...two or three steps beyond, and they consider hospitalization. It looks like I will get through this without requiring that. I will take all the meds they want me to take; I am beyond protest, and I look forward to my next dose of hydrocodone like it's a banana split.

Good friendly comfort food list..any more? Looks like a lot of people pick ice cream. I'll stick with my bagel, or as Ann said, a piece of Pizza, and I agree... even bad Pizza beats about anything else.

checking in - four hour rides

Radiation day 28 of 35

Seven more days of radiation...next Wednesday!

My days and nights are now being experienced in blocks of four hour roller coaster rides. I take hydrocodone, the next 3 hours are manageable, then I start feeling my throat and tongue pain, then the unbelievable dry mouth starts to bother me, then I wait till the 4 hours are up and get my next dose. Then I wait a few minutes, and start feeling better. I swallow as little as possible; and it is horribly painful when I do. I think I got the food talk out of my system yesterday, so I won't blather on that again, though I still would like to hear what people consider their best food friend. Just a short entry today.

checking in - clarification

a brief post script to my sandwich post (Oct 3) ...though the TV show featured Katz's deli and the Stage Door deli...my personal favorite is the Carnegie Deli...here is the real deal...a Carnegie Deli sandwich... and it tastes as good as it looks...this one is a genuine Carnegie Deli corned beef and pastrami sandwich. (I think it's called the "Woody Allen" on the menu.) That, along with a Knish (with lots of mustard), a pickle, and a piece of New York cheesecake...and you will understand that New York is the birthplace and rightful home of all Delis ...(Not that I'm biased, you west coast readers!). A little pricey for a sandwich, until you realize you can eat leftovers for a week! Actually, the photo only shows 1/2 a sandwich. I know a few readers who have eaten with me at the Carnegie, and if you care to comment...do so below.) Actually, New Yorkers have never forgiven Los Angeles for stealing the Brooklyn Dodgers, either.


Pastrami & Corned Beef Sandwich: "

Pastrami & Corned Beef Sandwich ($17.95) from Carnegie Delicatessen & Rstrnt in New York, NY uploaded by Graphracker"

checking in - thinkin bout bagels

Sorry to be so shallow...but the choices on today's menu are:

1. Write about how badly I am feeling today, all day. Just really bad and a lot of throat pain.
2. Write about the thing I have been thinking about other than how badly I feel.
3. Skip today and hope tomorrow I will have something other than food on my mind.

I choose #2. I spent almost a full hour lying in bed this morning thinking about my relationship with bagels. It is like a friendship...I have had bagels and memories of bagels at every stage of my life. No bad memories here, just a few lonely stretches of time when bagels (real bagels) were not available here in the Midwest. If the concept of "comfort food" exists, for me it is represented by a toasted fresh bagel, cream cheese and lox. I have loved bagels with such devotion over the years. It was the first thing I noticed missing when I came to Nebraska...I used to fly to visit my family in NY with an extra bag that I could fill with bagels to freeze. Not that bagels weren't sold, but they were grocery store bagels and a disgrace. Finally, in the past decade or maybe two, Brueggers Bagels have come to Lincoln, and they are acceptable. Because bagels are not particularly healthy (fattening, high glycemic index, low nutritional value) I have rationed my intake over the past 20 years. Otherwise, I could have a bagel for breakfast daily, and never get tired of them . I allow myself two bagels a week...one Saturday and one Sunday morning. And the lox (smoked salmon...the best from Nova Scotia) is a luxury I rarely indulge in...it's hard to find in Lincoln, but not impossible, just expensive. So, sometimes it's just a bagel (poppy seed is my favorite) and, of course, Philadelphia cream cheese. Flavored cream cheese does NOT belong on a bagel, anymore than pineapple belongs on a slice of Pizza.

I can be objective and see how people who don't have attachments to bagels can see them as a big blob of not particularly tasty dough, but they just don't understand those of us who grew up eating that masterpiece from infancy.

I was thinking that I have been too harsh about frozen Lenders Bagels from the grocery. Actually, they have their own taste and, while just not in the same league as fresh, bagel store bagels, they deserve to be respected. I was thinking how much I would enjoy even a Lenders frozen bagel...toasted a little too much...bordering on burnt, and a generous amount of cream cheese. If I could eat, I would gladly salute that Lenders and be humbled by how good it would taste.

I was thinking about those little cocktail bagels... they are bland and boring, but a nice snack nonetheless. I don't really like bagel sandwiches; I am a purist about cream cheese.

The one exception I make to the bagel, cream cheese and lox rule is that I will occasionally have a thin slice of a really fresh ripe tomato on the cream cheese on the many occasions when I do not have lox. Somehow the tomato can complement the cream cheese almost as nicely as lox.

So, a bagel, cream cheese and lox, and a cup or two of coffee on a Saturday morning is a wonderful way to start the day. AND, if there is a piece of coffee cake or Danish to follow...it's a holiday. I am a carb junkie. I could eat bread and bagels and cake and cookies and I am a happy camper.

Unfortunately, trying to eat a healthy bagel (whole wheat and low fat cream cheese, etc) just doesn't do it.

I have accepted blueberry bagels into the club, but really, that's more like a dessert than a breakfast. Poppy, sesame seed, onion, garlic, "everything" bagels all are my favorites.

New York bagels...I think it is in the water...are the best. And I always eat the bagel and cream cheese like a sandwich, not open faced. It isn't the same. The next bagel I eat, I am determined to eat mindfully, rather than reading the morning paper and allowing other distractions, (TV, etc) to share my sensory attention. I don't want to rush into it...I want to make sure I can fully appreciate the friendship...I will have to have most of my taste buds fully restored.

I have a few dozen "friends" in the freezer waiting for me...indeed...it will be a happy reunion.

Hey...if there is one food you have a "friendship" with...comment here. No cheating...limit it to one food (a bagel cream cheese and lox is a unit, so it is one food).

I miss you, my poppy seed circles of goodness.

checking in - nestling in narcoland

The morning deteriorated more rapidly than I have been accustomed to. When I start to feel bad, my whole body starts to feel bad. I started feeling bad before the sun was fully up. Weak, sore, depleted, and my throat, tongue, and mouth lead the pack. You get the idea. So I started the hydrocodone early. I will just keep myself in that zone today. And, it really makes a difference. The drug sort of surrounds me like a warm robe on a chilly evening. I don't get too loopy anymore, I must have adapted to my daily use. And, today, I will indulge by taking a dose at noon, four and eight. I hope that doesn't become a daily reality at this point, but, I repeatedly get told it is not necessary to suffer needlessly when these narcotics are available. So...as I write, I am feeling a little better. Now, I have to focus on keeping hydrated and feeding myself 5 cans of food (it's called Jevity...specifically made for tube feeding.) I never feel like doing that...it's a psychological resistance I think, because there is no reason not to. I am sure that when I start getting dehydrated, it just complicates everything else. I am stubborn in stupid ways.

Another stupid thing I do is watching the food channel. I just watched a show on the best sandwich places in the country. Of course, they featured a few New York Delis, Katz's and the Stage Door deli...featuring huge pastrami and corned beef sandwiches on delicious bread. And a sandwich shop in Pittsburgh that always puts slaw and fries inside the sandwich. I remember doing my internship in Memphis...the year Elvis died...I lived in the ghetto, and I remember venturing out to a small corner deli. I ordered a BBQ chicken sandwich...the guy said..."light or dark meat" I said "dark" He asked..."do you want cole slaw with that?"...I said "sure"...He took a slice of white bread, put a chicken leg (bone and all) on it, scooped a scoop of cole slaw on top of that, and then topped it with the other slice of bread, wrapped it up and handed it to me. I was thinking he was dissing me, but, i was not about to protest...it turned out to be just the way they served it.

I learned that year a little of what it feels like to live as a minority person...I was one of the few white people living in the neighborhood, and I had stones thrown at me a few times by 12 year old gangbangers as I walked to the hospital where I worked. I taught my beautiful American Eskimo dog, Nanook, how to "go" on command...there was a patch of grass behind the apartment complex, and it was very dark and isolated at night. I would take her out at around 10PM...we would run to that patch...and I would shout "GO" and she would squat and take care of business, and then we would run back into the apartment. We had it down to a science...until one day...she chased a cat...I went after her as she pursued the cat...got her turned around, and as I headed back to the apartment, a very large man with a very hostile attitude leaned out his window..."Is that your dog?" He asked..."yes", I replied, thinking he might tell me how beautiful she was...No, he wasn't that type of neighborly... "Well, that is my cat"..."the next time your dog chases my cat, I will kill it." I think I thanked him, and Nanook and I made haste back to the apartment. The director of the Internship told me he insisted I find another place to live as it was a very dangerous part of the city...I looked at it like an adventure...and though I was scared a lot, it really was an adventure. I befriended a guy ( or should I say, he befriended me) who didn't have a telephone and came over to use my phone to line up drug deals...he decided he needed to teach me how to defend myself when out and about. I guess he really needed to keep me safe so as to have access to my phone. He started by telling me to get a pair of dark glasses and wear them 24 hours a day. He said if anyone was able to get a look at my eyes, they would see I was an easy mark. He told me to never take those sunglasses off. He tried to teach me to sound tough....saying things like..."OK, you got a knife, but I have one good kick...come on MF...cut me, and you will spend the rest of your life peeing out of a bag attached to your body." I couldn't pull it off without smiling. We actually did become sort of friends, this inner city drug dealer and I. In fact, he invited me to a get together at his place with some of his friends. I went. His friends and he spoke English, but it was a different language than any English I ever heard. We spent the evening laughing... they at me and the way I talked...and me, at me and the way I talked....it was a lot of fun. And since my man said I was cool, I had no issues with his friends, and they had none with me. I had many, many adventures that year. Inner city Memphis in the late 70's was quite a place. Quite a place. I had an internship experience unlike the other interns, as they all lived in apartments in the safer suburban areas of town...they invited me over to their places, but were unlikely to want to venture out to my neighborhood. I never got cut, never got mugged (but did wind up being "approached" by a man with a gun late one night out back by the patch of grass and ...for real... talked my way out of that, though it was my reasoning, and not my "tough" talk that saved my bacon) and I met some very interesting folks. Quite a year. The internship was decent enough as well.

checking in - TGIF

Radiation day 27 of 35

I say TGIF with ambivalence...it is wonderful to be able to have a few days without getting up early to drive into the jaws of that horror machine. On the other hand...the count stays frozen until Monday. I want this over, and the sooner the better. OK, I will focus on the positive and enjoy being spared the action over the weekend.

To keep it simple today, I'll just stick to the experience of my day; I just slowly have more of the same, plus some, every day. The most painful thing is swallowing, the most horrible thing is the burning out of my salivary glands. The thing I fear the most is vomiting. I do not swallow very much as I do not have normal saliva. Another paradox... the longer I go between swallowing, the more dried out my mouth gets, and the more horrible the next swallow will feel. On the other hand, each swallow is painful. When I wake up after a few hours sleep, the first time I swallow, reality hits me awake like a slap in the face. I wake up very calmly...often, until I move, I am feeling OK...like...somehow there was some healing...it is quiet, it is calm, it is around 2-3:00AM, and everything seems OK for a few moments...very peaceful...then I try to swallow...and I see stars. Then I feel slightly nauseated...though I think...I am NOT going to be ill...and thank God, I have not been for several days. Then I sit up, after having gradually slipped to a more prone position over a few hours. I sit in bed for a few hours...until 6:30AM...these are not too bad as far as hours of the day. Then, I suddenly feel very tired, but force myself out of bed, into the shower, and my day begins. The mornings are consumed by the trip to Omaha and radiation, and sometimes appointments with the oncologist and check of blood levels. The early afternoons are OK; I listen to a book on tape or read for a while, but I start feeling worse as the afternoon goes on...until I take my first dose of narcotic around 4:00. Then, the next few hours are OK...then, I start feeling bad again, then, I take a second dose of narcotic around 9. I take a sleeping pill around 10. I try to read until I pass out...I do not turn the light off...I try to sit up in bed and hopefully just pass out.

I pray in a slightly different way these days...more just visiting with God a few minutes now and again over the course of a day. I also sense the prayers of others...I really do. There is a verse that I have been focusing on as a lifeline...I will share it some day soon, but it really feels sort of private right now. It is not the verse, but the voice of God speaking through it that is so comforting.

Eight days of radiation left. That will be such a lift to me. I know the recovery will be slow, and the burning continues after radiation ends, but what a relief to not have to face that daily ordeal, knowing what it brings. And to at least think, the healing is beginning...

I think my mood is OK and generally, I am in better spirits than I was during the early stages of this when I had infections and got so sick. I was dreading that last round of chemo more than you could imagine, and I really felt overwhelmed with relief when the oncologist told me he did not think I needed to go through that.

It has been around a month since I have had any food or water in my mouth, the last thing was a cup of soup...I think about a month ago. I tried a spoon of plain yogurt, and a spoon of flavored yogurt last night. The flavored yogurt was horrible, the plain yogurt was just miserable. I will wait a few more weeks before trying that again. The sip of water that I take with the sleeping pill is very difficult to get down. The other drugs I have in liquid form and they go into the feeding tube.

Thanks for reading all this. It just is what it is today.

deeper things - a silver tear appearing

Radiation day 26 of 35

What I write is what I write, as I go through it, and today, I have gone through a moment I hope I might be able to convey. I drove to my office and paid October rent, and I drove home. But driving home, this song popped into my head out of nowhere. I haven't been a James Taylor fan since the early 1970's, and I have NEVER been a country music fan. But he did write a few classic songs. And I don't know where or when I heard Alison Krauss sing this, but I must have, because that was the version playing in my mind. And I realized this song was sort of a gift to me in this moment. And so, as is my tendency these days when I am driving alone in my car...a silver tear appeared...

I just felt...dare I say...happy. The past is coming, nay, rushing, to make peace with me...it's not coming to me in a huanted way as it did for so many years. (No explanation necessary...this is a blog...not a case study). The present as well...it just all feels peaceful. I am in crazy physical hell...but in my mind, I am more and more and more...and more...(left open intentionally). And the future...well, it's beckoning, not wanting to be left out...it's got some space for me where the view is great and the sun is shining; I wont always be writing from the dark side of the moon.

I hardly slept last night, but I did not get sick, and I'll take that exchange. Sleep and food...who knew neither was all that important (just kidding). But seriously, I think I only actually sleep about 3 hours a day these days...isn't that odd. I am so tired, but I can't sleep.

So I came home and found this on YouTube. And once again...in my mind...I drifted along to Carolina, with a few tears. And in my mind...please indulge me, even if you don't want to listen... please just listen anyway and catch a few words, and you go there too. Yes, there are times it seems like this ordeal "goes on like this forever"...but it would make me happier if you could travel with me during the good moments like I had today, and maybe if you would listen...it would make me even happier. (Note the very end of the song...by golly...there is James Taylor in the audience.) So...the rest of what I have to say today was written for me already in this song, and has been waiting for years to come out.

By the way, I have absolutely no connection with Carolina...but it wouldn't sound right if James sang..."In my mind I'm going to Long Island."

love is the finest thing around...

deeper things - how to eat a desk

Radiation day 25 of 35

It's confirmed...my oncologist is spared the unpleasant task of being force fed a desk...and I am not going to have round 3 of chemo. I don't think it is low blood counts, as my blood counts are good. I think he really doesn't think round 3 is necessary. I also found out, most patients with the same diagnosis only get two rounds of chemo. So... I am one relieved human being. And so is he!!! To be safe, he sent his assistant in to sub for him today...I wonder who tipped him off.

My energy level is akin to a rock...I would lose a race with a snail ( at least in the past, it would have been close)... and I would not try to arm wrestle a baby, because I would lose. Starting today, I am adding a second dose of narcotic pain meds each day to help get me through the day. Enough of symptom talk.

After much consideration, I have decided to share ( briefly) my thoughts on how to eat a desk...

1. Remove all screws, nails, hardware, fancy drawer pulls, etc. You may think these things are necessary, but what you will learn is that much of what you thought was necessary is not only superfluous, but actually a hindrance to your goal ahead. You will come to recognize the beauty of a plain wood desk is in the plain wood, not the bling. Adding bling is often biting off more than you are prepared to chew, so to speak.

2. Carefully saw the desk into 1000 exactly equal portions. Just do it. You will realize that the loss you feel is only temporary...you really are just changing the form of the desk, and it will be reassembled internally. You will not lose everything, it will only seem that way for a brief time. You are losing nothing.

3. Put the 1000 pieces into 1000 baggies. You must never look at the pieces again as one big desk. You will become discouraged. Instead, you will have one baggie (Tuesday's baggie) to contend with. That is all.

4. Get a good night's sleep...tomorrow will be a big day.

5. Wake early and retrieve a baggie. This is your day's project. Begin by sanding it finely into sawdust. Again, do not grieve; it is just changing forms, and you have lost nothing. Never think things must stay the same. You will never get the desk eaten that way.

6. Here is where you get to make a few decisions. This is your day... If you'd like, charge right in and begin washing down bites of sawdust...or, if you prefer, take some time and spread it out a little and bake it into muffins, bread, sprinkle on cereal, oatmeal, etc. Perhaps you might prefer to vary your routine. You have many options...more choices than you realize, and none have to be permanent, as tomorrow you get to choose again, anew. Try to finish early enough in the evening that there is time to reflect on your day's accomplishment and time to relax a bit. Be thankful for your day. Be grateful and appreciative of the new recipes offered you (sawdust soup, sawdust stew, sawdust a la mode, etc.) Your job is done. Never let sawdust dominate your thoughts. Think instead of all the people who were kind, and the people you might one day help through the same or similar trials...some may just be eating pencils, some armoires. And remember that you still have a life...sawdust is not and never will be your life. Your life is still precious. Each day is still precious.

7. Never tell yourself..."I have to eat a desk." Just recognize one baggie as your day's labor. A baggie is not a desk. A desk could not fit in a baggie. After all, who could possibly eat a desk?

8. (Optional) ...start a blog...write one entry....maybe others will become interested in seeing if you could really do it, and find ways to encourage you. Maybe you will be blessed to discover love and friendship hiding in the words along the way. (one doesn't need a blog for this to occur). Flowing from God, from family, from friends, even from strangers.

9. Repeat #5-8 for 1000 days.

10. After day 1000, wait a few months...you will slowly lose the taste of sawdust on your tongue until eventually, even you will wonder if you really did something that difficult.

11. Have a large piece of pizza with NO sawdust... and smile...you ate a desk!!!! You have become MORE than what you were! You may forget the desk...but dare not ever forget the love....recognize that that is what it has been about all along... Some of us are so blockheaded we have to eat a desk to learn such a simple lesson.

checking in- blum returns to Earth

radiation day 24 of 35

Yesterday was a moody one. So many people have been reminding me how "close" I am to the end of treatment, and I did not feel at all close to the end of anything. I wanted to pitch the acorns (I didn't) and I wanted to be grumpy (I was). I was having a fair amount of discomfort. I wanted to loudly say (I am not really able to raise my voice much above a whisper) ..."Cant you see I am no longer living in the same time zone as the rest of you "normal" people. One day can seem to last a year, and one week is like a decade. Anyway; I am back today. Two weeks from tomorrow and the radiation ends. I am sort of counting again.

The radiation oncologist tells me to try to eat and drink, or at least sip on some liquids. I look at him like he is an alien from the planet Zork...the place where one can do whatever is impossible. He looks at me like I am from the planet Dork...the place where patients are always noncompliant. It's a stalemate. He tells me if I stop swallowing food and water, it will take longer for that to come back. What does he mean..."if" I stop swallowing? I tell him every time I see him that I am NOT eating or drinking. Next time I see him, I will strike a deal...if he will eat his desk, I will drink a cup of water.

I once contemplated how I might eat a desk...over a very long period of time with a lot of sandpaper. I am sure it can be done. Lots of fiber as well, so you know it's going to help in other ways.

I am more chipper today because I did not get sick during the night. I slept propped sitting upright in bed. That helped. I am sure that getting sick when one's throat is completely swollen, burnt, radiated and raw is one of the TOP 10 most awful things to go through on any given September night. I pray none of you ever have to have that experience.

It was around 40 degrees this morning...to think, I started radiation in August!!! Tomorrow is my appt with my medical oncologist. He has implied that we are going to skip the last chemo round. If he confirms it, I will be sooooo happy. If he changes his mind...I will MAKE HIM eat his desk.

One other good bit of news...I did not drop any weight this past week. I am holding steady at 145.