Sunday, December 20, 2009

A Thousand Poems

A Thousand Poems

I will write you 
    a thousand poems
    when you are gone
    in words
    that I can not find now.

I tell you now
    so that you
    can look for them
    inside me
    where they are now hidden
    neath the fear and guilt
    of not being
    all I could have been for you
    and if uttered
    will shorten our time.

Each day
    in simple tasks
    when you are gone
    I will talk to you
        as much as the one
        that lives inside me
        that I call I.

Little things,
    too small to remember
    you will share with me
    in my mind.

Big things,
    you will help me settle
    by listening
    and making me rephrase
    by your probing silence
    penetrating my skull 
        after you are gone.

You will be here
    with me
    by my side the rest of my life
        I will want to share things
                    with you
            and try to remember them
                        and show you
                                when I see you next.

Remember the time 
    I moved to Maryland
        a year before you
                I drove down the roads
                        and looked at houses
                            talking to you about them
                                in my mind
                    Waiting for you to join me.
                It will be the same
       almost the same
except the time apart. 
  

I will tell myself 
    not to talk to you anymore
        not tell you about some new spot
            but I will do it anyway
                until I babble and repeat myself    
                    and talk outloud
                            like a madman
                                    walking down the side of the road.
 

I will write you 
    a thousand poems
    when you are gone
    in words
    that I can not find now.

Roe, 12/19/09

Sunday, October 25, 2009

Laura's Visit



Well, its been a few days since Julie's sister, Laura, left.  I think I enjoyed her visit the most this time of all her visits,  except perhaps her first visit, the day before Julie's wedding.  When we first met, Laura and I sat up most of the night talking, I don't remember exactly about what, but it was the talk that occurs between people that like each other and both love a common person.  Laura was rougher then and more opinionated, weren't we all. But, with Laura it was more like she was on some ill-defined mission to prove the world was off-track and she was by definition on the only path left.  Well, that was my view back then.  Then I remember the middle years of her visit, where she did not understand our rather undisciplined way of raising our kids.  By the time we got to our third, Olesia, she pretty much ran the roost as they say.  I remember Laura pinching Olesia at the table one day because she was her usual rambunctious self.  Olesia looked shocked at the time and later talked to me in an almost philosophical tone that Laura should not assume the job as her parent.


But, the Laura of this visit was quiet and even peaceful.   I asked her about it and she said "I guess I have come to the point that I realize my limitations."  But, it was a softer Laura that smiled a lot more than I ever remembered.

I didn't see Julie and Laura talk much, especially when I was around.  But, maybe they don't need to.  Silence born of many years of just being there for another can be a pretty tight bond.  But, after I got up every morning to work, I would find Laura had moved and taken by spot in the bed next to Julie.  They would be watching some show on tv together.  Ashton, lucky dog, would be laying between the two of them and barely raise his head to acknowledge me when I came in. No pictures.  

Pictures of Laura's Visit

Laura when she hugged me at the station, no pictures, said, "take care of her."  I said, "I'm trying." 



Sunday, October 11, 2009

Cancer Group Brunch

Cancer Group Brunch

Bracing myself parking the car
Julie already inside
Walking down the road
Lip quivering, jaw clinched
Bracing myself 
Being strong one moment at a time.
Tears on a rock
shaped like a heart
fished from stream on charity's walk
Tear-drops on a drawing
Flowing down in pastel shades.

Room full of souls
Sharing a common trial
Pink ribbons, table clothes and plates
Fighting back
Some winning
Bravery widespread for all

Spouses falling over 
held up by hugs of the ailing
Small prizes for coming
A little hope for all
Against a powerful foe.

No one noticing
cheeks wet with life
Flowing over rocks
Strewn in the stream
with thank you's 
and humor 
the banks sprinkled with flowers
and some love for all.



Roe,
10/10/2009




Tuesday, September 29, 2009

Not Bad News


Julie talked with the doctor about the cat scan of her neck.  Turns out on the previous cat scan they only did her chest, the last one they did her neck and chest.  So, they could only compare the vertebrae in her back on the two scans; they didn't see any difference, both showed cancer hopefully dormant.  Hasford's opinion is that the cancer has been in Julie's neck for a long time, that it is not new.   Obviously, an assumption, but probably better than my initial assumption.

Julie insists nothing has changed.  Oh yea, she has lost about six pounds over the last month or so.  Again little data to go.   But, that is the nature of this disease to start seeing ghosts that are not there, or perhaps shadows of what is waiting.  So, lets hope I am delusional.

By the way, Olesia hurt her foot playing tackle football with the guys.  She has an air-cast on and is on crutches, struggling to get to classes and up the three flights of stairs to her dorm room.

Monday, September 28, 2009

Balance Problems


With all new changes, they come slowly.  At first, I don't know if they are my imagination or my excessive concern gone south again, but it seems to me that Julie's balance is getting worse after nearly full recovery after the radiation treatment.  I lose my balance sometimes when I am trying to dress after my shower standing in the middle of the room trying not to hold onto anything as I dress -- its my first exercise of the day.  With age, or with sore knees after a day of tennis, sometimes I cheat a little and hold onto something.  So, I know what age does to balance.  But, with Julie I am afraid it is more.  There is nothing firm to hold onto yet, nothing that I can say to convince Julie or the doctor that things are changing, but enough to convince myself.


Of course, I am worried that she will fall and worse that is a sign that the cancer is on the move again.  I told Julie about it and she said her head is just "floaty" and she lack confidence.  But, that sounds more like a description of how she feels than anything definitive on whether her balance is getting worse or not.  Her logic did not seem tight, which I added to a list of the subtle symptoms. 


In conflict with these symptoms, she has been trying harder lately to work on her projects, dolls and stuff, and doing work around the house.  Right before I left and right after I got back she sat on the lawn tactor and mowed the lawn, my job.  My tolerance of high grass exceeds her tolerance.  I usually mow it to her schedule, not mine, but the trip to NC and SC took some of my precious time (however, it was well spent).


I am planning on going to Olean, NY next week.  I think Julie will be okay but I can't help but wonder which trip will be my last one.  They are also laying off people moving from department to department -- they are not yet to our metallurgy group.   Another reason to wonder.







Wednesday, September 23, 2009

cancer in the neck bones

At the doctor's office. Cat scan results show that cancer is in the bones of Julie's neck and chest. I'm crying a little, julie seems fine.
Since I am the only one who's memory does not recall cancer being in her neck before the Doctor has directed the radiologist to go back and compare to previous cat scans done on 09/12/08. Well, I hope my memory is the one that is wrong. Alan Kidd at work told me cancer in the bones was very painful for his wife who just died...made her insane with pain.

We are now getting blood work at the clinic for julie's herceptan treatment next week on Tuesday.

Tough stuff dealing with cancer and watching it.

Monday, August 3, 2009

Coverup and Cancer Partner

Imagine your company is covering up a problem that could result in killing people in the due course of time.  A good analogy is cigarettes.  Imagine that you know, and your company knows that cigarettes kill people.  But, if you pretend you do not know and leave no record of it, then everything will be okay.

Yea, that is not the moral road.  And if I knew my being fired, or quitting, who cause the company to be proactive, I believe I would go there even though I need the job to pay medical bills and I enjoy the freedom of my present arrangement to take care of my wife.  Yea, I am sure my company if they read this can connect the dots, because the dots connect.  Saying they connect is the sin however, not that the dots connect.

I wish the world was a better place and people tried to do the right thing.  But, in all this coverup, not yet have I heard in the room, "what is the right thing to do?"  Instead questions are on "how will the market will accept the news", etc. etc., all money questions.  Its a sad world we live in.

Tuesday, July 28, 2009

A Break from Cancer, Two Weeks in Wyoming ... a Typical Day

Woke at 7am, showered, etc. and went downstairs to the ground floor for breakfast, some eggs, sausage, waffle, orange juice, and three cups of coffee. Got a call at 8:15 that they were ready for me at the site.  Packed my computer, camera bag and a lunch box.

Drove 60 miles to site.  I call my wife, no answer.  A little later I see she has left a message.  She sounds tired.  Saw some wild mustangs, includling a black one with a white back, a few hundred yards off the road.  I wanted to stop and take pictures, but I followed them yesterday for miles to get close enough for a few good pictures.   The dreamer in me wanders behind them for a day's journey through the dessert until a colt comes up and greats me.  The journey is so vivid in my mind that the ending of this imaginary journey makes me sad, I feel tears in my eyes as I rejoin my body going down the road. 

At the site, I spend a lot of time waiting, eat my lunch, then suit up to go in to the AGI buildings.  I get a call from Allison telling me about her apartment,  how much money she needs to get in, and about her job interview. This area compresses H2S and CO2 for reinjection back into the ground after some CO2 and almost all the methane was removed for sale.  You wear an emergency air bottle on your back and are connected up to an air line and face mask before entering the area.  Why, a small leak in the compressors or pipes and one breath and you are dead.  You were an alarm set at 10 ppm of H2S along with a dozen other meters and alarms in the area.  The concentration in the compressors, 650,000 ppm.  The concentration that will kill you with one breath, 5000 ppm.  If there is a leak, don't panic, you have an air line.  Walk to end of the air line, disconnect it, and then turn on your tank on your back.  If your reverse the order, turn on your bottle and then disconnect, all your air will go into the air lines and you die.  Then you look at the wind socks and walk across the path of the leak and then walk upstream until your air runs out, about five minutes if you stay cool, less if you run or if you get too scared.  Keep your pulse rate down, be cool for once in your life and live, panic and die.  Strait forward really.

I go into one of the casing of the  compressors and crawl down the inside of the casing, a long tube, looking for small pits or cracks.  I stop and photograph the few that I find.  The casing seems to be in good shape.  Suddenly my partner at the other end says he has found something.  It looks like a long crack in the casing.  I look closer through the plastic mask and the glasses mounted in the face shield, take a few pictures, say a few curse words.  I've been in for a couple of hours, my chest hurts from drawing air through a tube, its hot outside, hotter in the tube, hotter yet in my coveralls. I crawl out and motion to him that I am going outside to rest and think.  I see my trip to Wyoming being extended.  I go outside of the area and disconnect from the air, sit and drink some water.  I contractor who has done the dye penetrant tells me it is not a crack.  We suit up and go in again, up the stairs, and to the compressors.  He scrubs the end of the crack off with a brillow pad.  I think he has just smeared the crack so I scrub wth some solvent and a paper towel.  After a lot of elbow grease, the crack disappears.  It was only a build up of DBT and oil that had harded around the O-ring.  I realize that another small crack I had photographed could be the same thing.  I go back into the cases and use elbow grease on each suspected crack.  They are all dirt, not cracks.  However, the pits and weld porosity photographed earlier are real. 

I let the bosses know what we have found, and not found.  I set up a meeting for Monday to talk to the Plant Manager.  I get out of my equipment, wash up, pee and hit the road.  I take a side detour coming home down highway 28 to Farson.  It crosse the Green River, I stop and take pictures. I continue on, a sign says "Antelope entering Highway at 55 mph hour."  I am wondering if an antelope can really run that fast as I pass ridge on the right.  My eye catches the movement, its an antelope breaking the speed limit coming at me hard from the right.  In a microsecond my brain computes that he will clear the road before I hit him, I'm only going about 65 and he has position.  I relax for a second. He leaps onto the road, twenty feet in front of me and stops. HE STOPS. My brain yells cuss words, I picture antelope pieces come through the windshield.  I imagine eating antelope steak that I scrape off my hood.  I recall his stop that occured in real time a few tenths of second ago.  There was no skid, no sliding, just a big leap and his speed goes from a million miles an hour to zero. 

I hit the brakes hard, my car slides, everything in the car flies forward, my camera, the GPS, my phone, water bottles.  We are about to get close and personal, in a microsecond I consider letting up on the gas and swerving into the ravine.  I imagine flying through the air, landing hard dust flying, my radiator rupturing.  But, before the six microseconds passes, the time to execute the plan, the antelope takes a single leap into the other lane as I slide into where he was 10 microseconds before.  I'm stopped and he's stopped, eye ball to eye ball his face almost as close as mine to the side window.  He says to me, "I told my brother it would be fun, he's over there," he said pointing over his shoulder.  I started to tell him what I thought, but I took his picture as he posed instead.

I say to myself, that was interesting.  I didn't know that antelopes stayed close to their sipplings.

I see a sign that say "Wild Horse Circle", a small excursion I think.  Beautiful mountains and drive, but no wild horses.  Hours later I can see the highway miles below me, but I can find no road to get back down.  Turning around and retracing my steps is not an option. I check my water supply and gas wondering how long I could last.  It has been hours since I saw some cars.  They were empty and broke down from hitting rocks, breaking axles and stuff.  I imagine that the small Nissan I saw is opened by a beautiful woman clad in white shorts, no red shorts, and a halter top.  I nurse her back to health and she catches me looking at her boobs and she slaps me.  The GPS calls me back to reality.  The GPS is worthless.  The GPS keeps telling me to turn where there are no roads, only cliffs. It is suicidal.  I take pictures of a mound in the distance with lightning going off.  I stop and take a picture of a rainbow, some cliffs, some thunderstorms. I take a picture of my foot, well my shoe really.  It doesn't turn out well.

Many moons later, I got to the hotel and answered some emails on my phone sitting on the John.  Sent an email to Peter telling him I will invoice the job in Peru that I got him, for a small finder's fee.  He calls, I tell him what the email said that I just sent.  I give him some advise on types of corporation for his new consulting business.  I call Julie again and talk to the voice mail.

I shower go to a sushi resturant next door.  There are a lot of Chinese people running the resturant although they also serve Japanish dishes, including sushi.  I get a sushi deluxe and a Shapparo, Japanese's oldest beer, or so it says on the bottle.  I study one Chinese woman, very beautiful. I smile at her.  I saw her in the restaurant last week, I imagined ..........  As I am ...........neck in my mind,  she comes over  to me and says "hi".  I look at her neck, she notices.  I tell her, "you are the owner."  She replies, it is family business.  I answer with "and you are part of the family." She smiles at my directness, and says, "yes, a little."  However, the "little" meant, "a lot" in typical Chinese humility.  I eat sushi and read the paper matte and find I was born in the year of the boar. I am therefore a boar.  It says I will have strife in marriage, but I am bold and chivorous.  Cool. 

I get home, well to the hotel, and get a ice cream with dove chocolate on the outside.  I watch a movie on our addiction to oil and a movie about guns on the Military Channel.  I write this blog, read some email and go to bed, per chance to dream, perhaps to wake up and live another typical day in my life.

This is an example of some of the other blogs I write ... just a taste.  Julie is doing fine, we will pick back up the details soon.  Olesia my daughter is struggling a little, well a lot, but I can't go there now.

Tuesday, July 14, 2009

From Wyoming Thinking of Julie

I'm sitting in a parking lot at an Exxon La Barge plant waiting to take
a drug test after a 90 minute drive from our hotel in Rock Springs.
Nothing much happened on the ride, saw one Antelope.

I had a text conversation with my daughter Allison last night. She
graduated a couple of months ago with a double Masters in Therapy and
counseling and has not been able to find a job. We also talked about
getting Julie some pot since her stomach is upset a lot from the oral
cancer medicine, Tykerb. The doc just said 'try it' knowing that modern
medicine does not have anything that works. in our case, it is good
that the moral majority has lost the war on drugs with their Plan A,
which was formulated in the 50's and never changed despite 50 years of
failure. I digress.

On Julie's last MRI 10 days ago, her brain seems to be still free of
cancer. However, they did see some anomoly on her skull, in the layers
adjacent to the bone. They hope it is just damage from the radiation,
but she is scheduled for a spinal tap the last week of July when I get
back from Wyoming. Both girls pass out when they get shots, or see
shots, so I did not think they should be involved.
Its 46 and windy here this morning, although I heard hot weather is on
the way, in the high 90's. Not being a doubter, im going to buy a wind
breaker at Walmart near our hotel tonight.

Well, more later. Oh yea, Olesia is visiting with her boyfriend at the
beach. She is more or less avoiding spending time with Julie, and to a
lesser extent with me. Her makeup emotionally is a lot like me but with
40 less years of life under her belt. I remember how hard my dad dying
was on me at 19, and it happened quicker without having to face it every
day slowing creeping into the room.

Wednesday, July 1, 2009

A Routine

Julie and I have settled into a routine, a routine revolving around her health and what she can do and not do.  If we looked at our current life style a couple of years ago, it would have been hard to imagine.


Some things stay the same.  Julie's dad is a constant.  He just called.  It is always the same, he rings Julie's cell phone, lets it ring a few times, never enough time for us to get to her phone which is hidden in her purse which is hidden somewhere in our house.  About the time we pick up the cell phone and before we can hit the recall button, the house phone rings and goes to the answering machine after one ring.  It always does to avoid all of those telemarketers who ignore the don't disturb us list.  If we are lucky, we get to that phone before he hangs up because he doesn't want to talk to an answering machine.  If we are successful, Julie listens to her dad talk about his life, mostly his health.  He thinks Julie's cancer is in remission.  It is something he has decided is true.


We watched quite a bit of Wimbleton today. The Roddick Hewett Match was great.  Roddick will have to continue to serve great and hit much bigger to have a chance against Murrey, the Scottman that all of Great Britian have their hopes on.  We saw a 62 year old lady do a funky dance on America has talent tonight.  Those are the kind of simple things we can enjoy these days.


Julie and Tykerb are getting along pretty well.  She only gets sick a few nights a week.  Julie has gone back to working in the yard a few hours a day much to the delight of our Jack Russel.  He sees her as a digging companion, a co-hunter scaring out rabbits from the bushes, and ruling with him over his kingdom.  He refused to go on his walk with me yesterday because I failed to hook up the leash to his collar.  Without the leash, how is he supposed to control his human companion.


Julie gets an MRI of her brain tomorrow to see if the tumors are starting to regrow after the radiation.  The Tykerb hopefully will keep the cancer from getting started again in her brain.  The herceptan is supposed to keep it out of the rest of her body.  All the other drugs she takes are to help her tolerate these drugs. 


Julie went to her Doll Club today and we hope to go see fireworks with friends on Saturday.  Tennis buddies. My leg blew up six weeks ago when I swiveld and went after a lob.  Right after I passed the speed of sound, a gasket ruptured in my leg causing a loud popping noise and blood running down on the inside of my leg.  Really cool.  I am in recovery.  Kind of like an alcoholic, I shouldn't try to play again because I can't go half speed as dictated by the age of my old tires, but insist on going full speed. 


My company, Dresser-Rand is starting to send development engineers at Painted Post, one of our other plants (I work in Olean when I am there) on furlong for a week without pay.  About three and half years after I join a company it goes down the toilet.  Well, its only happened 14 times in a row, so it may not statistically significant yet.  It has only been three years and two months since I officially started with DR.  I worked a few months as a contract engineer before I became an employee that works out of his house like a consultant.  April 17 was the offical date.  So, if history is any guide, then October 17 I should get laid off if the pattern holds for 15 th time in a row.  I don't think DR will go broke like most of the other companies / divisions I worked for.  My last company the owner, an old friend died at 3.5 years.  With all the medical bills, this one could be the BIG one, but I figured out a few cycles ago this is my Karma.  Someone up there is trying to build enough character in me to make into a philosopher and writer, so far without great success.


I am boycotting our home owner's association since they have turned into a full time bitching organization.  Perhaps I can lead a revolt to start a new organization dedicated to all noble causes.


Gordon Lightfoot's, Sundown, you better care if I find you have been creeping my back stairs. ... sometimes I think it is a shame when I get feeling better when I am feeling no pain.  Sometimes I think it is sin when I feel like I am winning when I am losing again.  Well, I won't go there even though sometimes life tries to pull me there.


Oh yea, an old friend, Tom Tripp from my New Orleans days that I sent a birthday card to last week sent me a note.  He told me he reads this blog and gets worried if I don't write in for awhile.  I have been surprised often by the number of people who tell me that they read this blog.  I write a political and philosophical blog also, plus poems, stories and other stuff.  At some point, when I get through taking care of my wife and kids, I am going to move to Mexico and write full time with the best hours of my day.  I hope I still have some when those days come.  Julie wanted to know if I will take Ashton.  He is looking at me with sleepy eyes wondering why we are still up.  He knows the answer. The dream of writing is what keeps me going these days.

Friday, June 12, 2009

No News is Good News

Julie had a routine checkup with the doctor.  All is okay.  The dioxycyclene, an antibiotic to keep Julie from getting infections in her hair follicles, makes her sick.  We told the doctor and she prescribed instead some cream, very good creme, at $140 a tube.  She couldn't tell if she gave us the right one, which was topically applied, or the one for inserting in the vagina.  She asked me to explain it to the pharmacist if she picked the wrong one.  Lucky, we support our pharmacist well.

The only other problem is that Dr. Hosford told us during the exam that Julie did not have to get another blood test to check her calcium before getting Zometa, (ZOMETA® (zoledronic acid) to help prevent skeletal-related events (SREs) in patients with advanced malignancies involving bone metastases. a drug to keep her bones strong to limit cancer's access).  She told to tell the techies to just go ahead and give the Zometa and tell them that she said it was okay.  Of course, the techies wouldn't take Julie's word for it and then called the doctor who forgot what she told us.  This has been repeated now three times and Julie has missed three doses.

Julie has a bad tooth and there is concern that the Zometa will cause some kind of degeneration of the jaw bone.  But, Julie had the dentist, doctor Dow, look at it and he said no worries.  Dr. Hosford keeps saying she is going to call the dentist and discuss it. However, this has been an ongoing discussion for months now without resolution. 

So, all is kind of going well.  Doctors are just too busy and they do not do a good job communicating with each other.  They apparently won't use email because of privacy concerns, but it sure seems like this is what they need.  Some lawyer / bureaucrat has made this decision for us and save us from our data getting lose on the Internet.  Thanks.  They have also limited the flow of communication between doctors.  Anyone heard of secure emails, encryption, etc.

Julie stays tired a lot but seems to doing okay.  She still gets diarrhea from her Tykerb many nights and has indigestion a lot, but that may just be a price of staying alive. Our daughters still don't get it. Olesia has got herself a job, two boyfriends, and manages to do the grocery shopping for us.  She doesn't help around the house unless we ask her to do something, which she does, but she doesn't volunteer much.  Allison was coming down for the week, but I haven't seen her yet.  She was recovering from her two weeks of vacation after graduation.  She has finally made a resume and started working the job boards some.  She is trying to find a job in just the cities she wants to live in Philadelphia, Charlotte, or Charleston.  I read recently that only 19% of the graduates this year are getting jobs.  She is also considering waitress jobs until she finds a real job, but she will be hard pressed to pay off $95K of college loans and her rent, etc. with a waitressing job.  She also needs to take an exam to get her therapy license, but does not seem to be in a big hurry.  I guess I am the enabler.

One last thing.  Julie just got requested to serve on a jury.  Now, that is interesting.

Monday, May 25, 2009

Status Quo on Tykerb

Julie is learning what combination of medicine she can take and not get sick.  We figure her tykerb is the most important, so all the other stuff like antibiotics, have to play second fiddle.  But, it has been a few nights since she threw up, so the strategy is working some.

Julie stays tired all the time and goes to bed early most nights, 8:30 pm or so.  She usually wakes up around 8 am and listens to the weather and her tv shows until lunch time or after.  She gets up in hte afternoon and comes down and watches tv.  Lately, she has been going out to the yard for an hour or so, and even mowed the front yard sitting on the tractor last week.

We have gone to neigborhood parties yesterday and today.  We stayed a couple of hours, which did Julie in, and then she came home and slept.  She said, half kidding and half serious, that I was flirting with Tina, a long-legged sister of Jody, who was throwing the party.  I thought I was just staring and drooling.  Tina is taking care of her mom who has Alzheimer's. She was telling me about the guilt she is feeling thinking about putting her mom in a nursing home.

Sunday, May 10, 2009

headed to NY after Mother's Day

For mother's day, Allison came home and brought Julie a bag of peanut butter and a card. Olesia called. I took Julie to see Star Trek and a fancy meal .
 
Julie is making steady progress in recovering from radiation, but her stomach is uipset a lot from the tykerb. I suggested we look for some  pot, but julie doesn't like the idea so far.I will leave for NY for the week tomorrow. I think Julie will be  tired but ok... feel free to give her a hand.

Julie has a doctor appt tomorrow am, I will blog from there. (I didn't.)

Friday, May 1, 2009

Julie's MRI and Life

Wonderful Julie, May 1, 2009 
We are at the doctor's office to get the results of Julie's MRI of her brain. Waiting, usual stuff. 

While we wait, Julie is having problems with acid indigestion. Hausford, her oncologist, prescribed nexium, but the insurance company said she didn't need it that zantac was enough. Perhaps, the radiation doctor, Dr Shah, will also prescribe it? Waiting, more on the next email blog.  Nope, he said Dr. Shah said Dr. Housford had to deal with it.

At lunch with Julie. Bran scan came out great, only very small spots of cancer found. They are hopeful that even these spots will disappear. They said her cancer is so fast and aggressive that it reacts / absorbs radiation readily. Anyway, good news. On the downside, she has infusion of liquid into her inner ear and probably needs a small operation to have tubes put in at least her right ear. Yea, no more swimming this year for Julie. She will see an ear eye nose doctor next week . The week after, I plan to go to Olean.  I am losing touch with work / Dresser-rand.  They are going nuts with new programs and initiatives to monitor our progress on everything.  I could not work in the office there anymore, even if it was not in Olean.   Too much emphasis on maintaining crappy systems and too little on actually accomplishing something.

Well, I just got word that FAFSA, the government loan agency did not approve Olesia for college loans this year.  Money that I took out to pay medical expenses and to help pay college expenses for both daughters from  our IRA, about $40K, counted as income this year.  That pushed over the government limit on income to receive government loans.  If I can't talk FAFSA out of this then I will have to take money out of my IRA for her college this year and then I will be over the limit again next year.  I am in the government downward spiral game.  Life sucks sometimes, especially when the government is involved. 

Back to topic. I think we have to start calling Julie the Come-back-Kid.  I have seen her twice this last year when she looked like she was weeks away from losing the battle.  Both times she has come back with the help of aggressive treatments from her doctors.  The downside is that I think I have aged five years in the last year.   I know what depression is for the first time in my life both for myself and Olesia.  

Olesia spiraled out of control when she came up on spring break and saw the effects of cancer entering Julie's brain.  Julie had just fallen because she was losing motor control and vision from the cancer.  Julie's face was puffed up from the steroids and her hair was starting to fall out again.  Olesia saw that I was struggling with it too, and it was all too much for her handle.  I didn't know it, but she went back to college and stayed in bed for two weeks.  I found out about it when she called me in hysterics (is that a word) when she was due to be in a debate but had not prepared.  Her A in the class was turning into an "F" and she couldn't do anything about it.  I asked her to take the train home.  She got half way and ended up stuck in the Baltimore train station.   It is not in the part of town that a white man wants to travel through in the middle of the night.  But, we did and we survived.  She is now on more drugs and seeing a psychatarist  again.  The bottom line is that she went from all A's and B's to one "F" and the rest still above C's, perhaps still A's and B's.  I have not talked to her about being ineligible for school loans. 

One of the good things to come out of the crisis is that Olesia may have found the second passion in her life, biology.  The first passion is Theater, or acting.  Well, she went to a major test in biology last week.  She had only read like 4 out of 13 chapters and she went to the test with the expectation that she would fail.  She called me after the test and was confident that she had at least a B and maybe an A.  It turns out that she reads about the environment and evolution all the time on her own, via the internet.  She was surprised that the what she had learned on her own reading, and what she remembered from Zoology from high school.  The test was on all the things she cares about.  Her primary concern is that she has to take a lot of math like Calculus. 

Monday, April 20, 2009

Hobbie

Here is a wonderful man, named Hobbie, that retired seven years ago. Everyday at rush hour he rides his bike to the bridge leaving downtown Elkton. He leans on the wall and gives everyone a big smile and wave as they go by. His smile is electric. He looks you in the eye, his eyes brighten up, and his smile says, "you have just made my day by driving by and saying hi."

I rode my bike about four miles the other day to get to him and have a short talk. He said that the people waving to him makes his day. I nearly choked up talking to him. I told him my daughter had told me that she always looked forward to seeing him when she had a pizza job a couple of years ago. He said, "everyone can use a little cheer, I'm glad I've found some small way to help."

He has become somewhat of a local celebrity here. Everyone who rides by on both sides of the street, slow down, roll down their windows and wave, some honk and smiles spread faster than a wild fire. And you just feel good after seeing him. It is absolutely amazing.

Julie is recovering very slowly from the radiation treatment. The Tykerb, an oral chemo drug to keep the cancer from the brain, makes Julie sick every night. So, she doesn't sleep well and ends ups sleeping all day. She thinks her vision is improving and it is clear to me that her balance and walking is getting better. But the long battle is having its toll. 

Tuesday, April 7, 2009

Tough Day on the Farm

Some days are harder than others.  It is hard to know in advance that a day is going to be one of those character building days, but once you are in the middle of it, you know you are there.

My wife had a rough night, I tried to sleep through her being sick, but my sleep was broken.  She went downstairs to not bother me.  I went down to check on her.  She was on the love seat when I got up and went downstairs without my usual shower.  I had meetings at 8:30 and needed coffee more than a shower.

My daugther missed her class again.  She got her psychriatrist to give her an excuse.  Ya, the sorrow is making it harder on her, but her procrastination is her real villian.  She says it is depression that is keeping from doing her assignments and planning.  I think it is her attitude that she can survive doing everything the last minute is killing her.  She almost takes pride in her ability to do assignments three nights in a row without sleep.  Really hard on the dad.

Consulting work went well.  Talked with the lawyer and co-inventor on my lastest patent.  I continue to make other people rich.  I sell my soul and patents for consulting fees.  The rich get richer, the middle class struggles on.

Worked hard on my day job, did okay.  It is hard to manage the bosses at times.  I am smarter, older, and wiser, and still it is all I can do to keep my bosses going in the right direction.  The younger rebellious engineers identify with me.

Then I walked the dog a couple of miles, made some supper, cookied some cookies, and then watched American Idol with my wifeeee.  I wanted to work on my business taxes, but running out of steam.  I still have to collect the trash and take it out.  I want to read a little on the Shack, but I think I am running out of steam.  I think I said that already.  I've had a bottle of wine, to kill the pain, and took time to write this blog and a couple of others.  Hopefully I can get up earily and catch up.

Coffee and Julie


Coffee and Julie

Update on Julie.   She took two Tykerbs last night and was up most of the night half throwing up and half belching.  The Tykerb is important since it is really the only drug the doctors have to keep the cancer out of her brain.  The first time she took it she broke out in a rash, which she now thinks was Shingles (adult chicken pocks).  The belching has been going on for awhile, although last night was more severe.  She is tapering off on her steroid medicine, which we are hoping is the culprit.

Anyway, Julie is sleeping and I am working. I am just as tired as normal.  I buy and drink lots of coffee these days.  I mix decaf and regular so I have to drink twice as much coffee to get the same amount of drugs (caffine).  It would be hard to function otherwise.

Saturday, April 4, 2009

Movie and Jakes

We had a normal evening, which these days is not normal.  Julie and I went to see "Monsters and Aliens", a cute movie.  Julie was a little shaky, she has been all week.  We are hoping it is just the withdrawl from the steroids.  She has about four days left until she is done.

After the movie we went to Jake's and got sandwiches and shakes.  Don't get the Big Jake, it is too big.  I should have read the fine print, 3 big patties.  Julie felt bloated and went to bed.  Again, the steroids make her blow up.

Got a new boss at work.  We will see how it works out.  He is treating the group a little like they are children.  He seems to be acting, playing the role of being a boss -- not too sure what he should do. He is struggling and the group is struggling with him.  DR is not the easiest company to work with, he has yet to realize how much the system is going to block him, and has blocked us, in getting stuff done. We will see how it works out, I'm not too optimistic at the moment. I am the only one he has left alone, not sure why yet.

Thursday, March 26, 2009

Radiation Treatments are Cruel and Unusual Treatments

 
Well, Julie has one more radiation treatment this week.  It has not been kind to her.  Her face is all red and blistered, her mouth is full of sores, and she has no energy.  She got down today to clean out the liter box, which is my job, and then could not get back up; her thigh muscles were too weak.  She rolled backward, with Ashton trying to help, and then had to roll over on her stomach, get to her hands and knees, and then get herself back up.  

 
Julie's entire body turned red about ten days ago from a rash.  Dr. Housford is afraid it could be a drug allergy with Tykerb, which is the cancer maintenance drug they hope will keep the cancer out of Julie's brain in the future.  We are hoping that it is a drug interaction with the steroids Julie is on to reduce the swelling in her brain.  
  
Dr Housford has done a great job, my opinion, as Julie's oncologist.  They are learning as they go, why, because even five years ago they did not have the drugs they are using on Julie.  And, they are just now learning from these five years of experience what works and what doesn't.  A new study just came out the Doc told us that said the type of cancer Julie has commonly moves to brain after about a year.  Julie will be a datapoint confirming that trend.  The Doc does keep an extensive log on Julie and her cancer. Everything is now stored on computer files and shared among other docs, I assume. 
 
At the moment our general practisioner and Julie's oncologist is a woman.  They represent my first experience with women doctors.  I like them both.  I give doctors a hard time, cross examining them and even making them listen to my stories.  Pure torture, I assure you.  These two women pass with flying colors.  With male doctors only about 10% past muster. 

Finally, here is me taking over more of the functions that Julie did around the house.  I am overwhelmed a lot of the time.  I'm tired most of the time from dawn to midnight.  Julie still trys to do things, but often is more in the way that helpful.  She doesn't read this blog, so don't tell her I said that. 

Peggy and Jody were over a few days ago helping again.  Peggy helped in the kitchen and Jody worked in the yard.  Here is picture of  Peggy overdosing on a sugar cup cake. 

Friday, March 20, 2009

Cancer News

Today, started out on a sad note.  The nurse at Julie's chemo clinic had a sad tale.  She was just back to work after taking a few months off.  Her 17 year old son had just been murdered.  When her son was seven, his dad committed suicide.  She said, the life drained out of him on that day.  He was angry.  Fell out of the system, went to juvenial school.  He had just got out and he was anxious to play foot ball in high school.  He found out that they would only half of his hours from juvey school.  Upset and angry, we went back to hanging out with old, not so good friends.  But, his last act, was to try to stop a man that was beating up a woman on a public street.  He saved the woman but got knifed and died in the hospital a few hours later.  Here I was staring into the woman's eyes, I didn't say anything to her, I just cried.

The cancer doctor reviewed Julie's condition and gave us some preliminary bad news.  She said that Julie's vision may not return to normal.  I took this as more sad news.  Julie said, "maybe I will adapt and do okay".  Her body is still free of detectable cancer.  The new cancer drug, Tykerb, is causing problems with acne, mouth sores, and pimples.  They reduced her dosage from 5 pills a day to 4.  

I left Julie in the clinic while I went to the local coffee shop where I work via their wireless connection and drink coffee.  I took a conference call on the outside bench.  When I was finished I turned to go inside.  Door locked.  I saw the owner, a middle age woman than really likes Julie, inside talking to a man.  I knocked on the door again.  She yelled out, we are closed.  I asked what time do you open.  We are not opening.  I was confused and then noted the sign on the door, closed until further notice.  Perhaps another causality of our economic crisis.  Great place, I will miss it.  The two waitresses that work there, I guess they just became two more unemployed people, not spending their money, and so the downward spiral goes.  Real people, real pain.

Instead, I went to the pharmacy and got pills.  Got a call from Jens from Denmark.  We are trying to get a project funded on magnesium processing from the European Union.  We have been trying for ten years, more or less.  We are close again, to getting a million, or so we think.  I am already starting to spend the money.

Held a meeting with Olean via webex to get a project funded for next year.  Got about half a million, I have to work some more to get the other $130K I was asking for.  Nope, its not mine, just money I can spend getting my work done.

Older daughter, Allison, came home to visit for supper.  She left early since she was going to a party held by one of her gay friends.  She is opening to expand her group of gay guy friends.  She says they are the best friends a gal can have.  Olesia, made peanut butter cookies.  She is now responsible for me being overweight, code word for fat.  But, I am full now, too full, and will never eat again.  I promise.

Thursday, March 19, 2009

Life as a Dog or Bear

I have a running dialogue with my son about my food preferences.  He is a sometime vegetarian, try to eat healthy kind of guy.  I told him my dietary preferences run more like a bear.  Tonight when I was eating my cookies and milk, with Ashton staring at me, Julie said I think you are more like a dog.  Olesia, home visiting from college, laughed and said "that's right".

Well, the dog or bear is taking Julie to the doctor tomorrow.  She has radiation, chemo, and a doctor's consult scheduled for tomorrow.  I have a meeting at work tomorrow at the same time.  I told them I would call in if I could.  They have been pretty good at work, but I try not to take advantage of their kindness.

Julie had a pet scan a couple of weeks ago.  The nurses gave us a sneak preview.  It showed that Julie's body is still free from cancer, at least to their limits of detection.  She is at the end of her second week of radiation treatment for the cancer that has moved to her brain.  The third week is supposed to the be the hard one.  This week was discouraging enough.  Julie in bed one night told me that it is hard feeling bad all the time, especially if you don't know if you are going to feel better tomorrow.  She can't read because the cancer is affecting her vision, she is tired from the radiation, and the new Tykerb drug is giving her acne.  And yet, during it all, she had the thoughtfulness to tell me one night, that "you are a pretty good guy."  I tear up writing it.  I have not always been the model husband.

Olesia is home from college for spring break, or something.  She sleeps a lot.  I eat a lot to compensate.

We are watching Grey's anatomy where they are putting a new face on a person with a seriously disfigured face.  Gross. Cool. Wonderful. Difficult to comprehend how you relate to someone with a new face.  We put so much emphasis on the superficial in life, how would we deal with someone with a new face.  What if the skin color was darker, or lighter.

Lately I find myself asking often, what is the last time we do this together.  The little stuff, like meals and stuff I don't worry about yet.  But, perhaps the last trip which was to Paris, will be our last trip of any significance. When we go out for Mexican food and Julie's stomach has trouble, I wonder if this could be our last time out to Mexican food.  We started eating Mexican many moons ago in Tucson.  It is the food I most associate with our Marriage.  Symbols.  Symbols of our lives, all around us that we take for granted.

Julie with her vision is having trouble working on her dolls. I hope each doll is not her last.  I know I shouldn't think that way, that I should be upbeat and encouraging.  Luckily, she doesn't read the blog, it is our secret.  Here are some of her dolls from 2008 .

Monday, March 9, 2009

call from my old boss at DR

Before I left I got a call from old boss at DR concerned about me leaving Julie alone for a few days. He is a good man. I told him I woke up Saturday night with the same concerns, but Julie asssured me she would be ok. That seems backward, but that's how it is. Well, got my drugs (iced coffee at the big M), TIME TO MOVE ON DOWN THE ROAD. I am listening to a book on tape about an assiasin from the future (sp).

Thanks in Advance

The neighbors have volunteered to help this week.  Thanks in advance, you all are great.

Allison, our daughter, is taking Julie to the radiation treatment tomorrow.  Trish has Wednesday covered, Peggy has Thursday, and Janice has Friday covered.  Jody volunteered to take the trash to the street on Tuesday evening.  (Will probably need to empty the cat litter into the trash also.)  Ashley and Amber have volunteered to walk Ashton each afternoon -- otherwise he will drive Julie nuts.

It's great to have good neighbors.  I will check in on Julie via phone a couple of times a day.  If I don't get an answer for too long a period, ya'll might be a freaked out phone call.  Anyway, I am off to Olean with three more books on tape.  Just finished the "War Within" a documentary on the Bush Presidency and the way he handled the war.  Depressing and scary stuff.

Saturday, March 7, 2009

Chocolates and Falling Down

Two nights ago Ashton was so wired up there was a gleam in his eyes.  He was running in circles, barking, biting the cats and even snarled at me.  He was insane.  I kept asking Julie what was wrong with him.  We both said it was like he was on drugs, perhaps chocolate.  But, his heart was not racing like the last time he ate chocolate and we got him to throw up.

Friday morning we got up and near the back door there were wrappers, torn up papers, and what was left of a box.  The UPS guy had put his delivery, a box of chocolates from Jeff and Patty, under a lamp post that is in disrepair.  What was he thinking.  What is wrong with the front porch.  Who would think of looking in the back yard under the lamp post.

The lamppost was actually laying on what was left of the box.  Inside were five of what was about twenty or more pieces of chocolate.  Julie ate three of them, I ate two.  Ashton had 15 or 20.  It is amazing that he didn't poison himself.  His relationship with the cats will take a time to repair.

Jule got measured for her mask for her radiation treatments for the cancer in her brain on Thursday at Christiana (Helen Graham Cancer Center).  They sent the 3D model of the cancer to Union Hospital.  They did a dry run on Friday with the 3D and the radiation machine, but without any radiation.  They are verifying the model is working accurately and will start firing real bullets on Monday.  I plan to take Julie in and then leave for Olean when it is done.  Allison is going to come down and take her for her treatment on Tuesday morning.  We are looking for friends to help for Wednesday, Thursday, and Friday.

Julie got another Petscan today to see if cancer is back in her body.  We will know the results early next week, I suspect.

Tonight Julie got up to walk from the couch to the kitchen.  She started around the coffee table and then started leaning to the right and then almost in slow motion fell down.  She went down slowly enough that I knew she wasn't hurt, but it didn't inspire confidence in me of her ability to take care of herself while I am gone.

Julie has been the most discouraged since this whole cancer thing started.  She can't read.  Today when she finished the petscan she was not able to call me to tell me that she was done -- she couldn't read her phone.  She just waited on a bench outside the hospital until I showed up.  I was in the coffee shop near by waiting for her call.  It seemed about time, so I  walked over and found her.  I'm a little bummed at the moment.

Wednesday, March 4, 2009

A Little Help, If You Please

Next week Julie needs to go get radiation treatments Monday thru Friday morning.  They say it doesn't take long.  Trouble is, Monday afternoon I am going to New York.  I'm staying there until Friday.

We have one volunteer already, Janice, but it would be good to have several.   Julie can't see well enough drive and her motor skills are not good either ... too much swelling of the brain from cancer.  She could use some help walking Ashton and taking the trash out Tuesday night.

I have a new boss at work and I think it wise to go and meet him.  I got to keep the bread coming in.  Thanks in advance.

Tuesday, March 3, 2009

Good News from the Radiologist

Good news from the radiologist.  He believes they can remove all the tumors from Julie's brain with minimal long term damage to her brain.  They plan to give her radiation treatments five times a week for three weeks.  They will then check their progress and if necessary use some type of laser knife to clean up anything they missed.

They are optimistic that much of the problems Julie is having now is from swelling of her brain from the tumors.  They think her vision, motor control, and balance should come back to normal.  I asked why if the radiation works so great they can't use it on the rest of her body.  I didn't get a satisfactory answer.  His answer was we do it this because if we used radiation in one spot in her body it would just come back somewhere else.  I said, well, it does that anyway, so why chemo over radiation.  His answer was, because we found out it works better.  I concluded it did not really know why, it is something he has accepted without understanding.

We talked about our children especially Michael.  He seemed entriqued of the concept of a hippie.

Julie got some flowers from her brother and sister in law, see picture below.  The flowers and the good news from the doc had Julie's spirits up.  They also increased her steriods, which is also helping.  They said one side effect of the steriods is that Julie may get more surly.  I think they are working.

Sunday, March 1, 2009

When Only Small Things are Left

 Today I got up about 8 am, came down had some coffee and mindlessly went around the internet, looking for something.  I left for my tennis matches at 9:30.  I played out of my mind.  My forehand was awesome, my service was good, my backhand solid.

Normally tennis is very important to me.  And playing well often doesn't occur because I try too hard and get a case of nerves because doing well is so important to me.  I don't leave anything on the court, I try my best on every single ball.  I'm intense and love the game.  But today, mostly I thought about nothing.  I was quiet inside with my thoughts randomly going to my wife who was laying in bed at home.

When I finished playing, I went to the grocery store. My daughter visited two days ago and made us a tuna noddle salad, but she forgot the green peas that Julie loves.  At the store I picked up one, then another, and finally three bags of green peas.  I never want my wife to do without green peas again in her tuna noddle salad.  She just got out of bed and is eating the salid, with Ashton our jack russel watching.

We are watching "Taking Chance", a very sad movie about escorting the fallen in battle to back to their home in Wyoming.  A very quiet respectful story.  I am not much for war, but I do respect anyone that does what they think is right, especially when they give their life, even if I don't agree.  I am looking at a funeral sceen and my wife is hollering at Ashton to let the cats finish their meals without him stealing it from them.

I am drinking a Bud Lime, my second, and thinking I should do some book keeping on my second job.  It is deary outside, it snowed about half an inch last night.  Just a quiet day with my wife, Ashton, my two cats, and my thoughts.

Friday, February 27, 2009

Julie Still Optimistic

Julie says I am too negative.  Julie has lost vision in the lower right quadrant in both eyes.  Her balance is not great and she has a little weakness on the left side. Her vision is generally impaired in the left eye.

It all scares the crap out of me, I have to admit. I am scared for her, I am afraid of losing her.  The MRI showed multiple lessions / tumors.  We go to a radiologist on Tuesday.  They will map out her tumors and start radiation treatments.  We will know more then, perhaps.

Julie remains optimistic and gets after me for "giving up" on her.  I haven't given up, but I am afraid of the cancer inside of her and its virility. I am afraid of losing her one small part at a time.

Thursday, February 26, 2009

julie getting MRI

I'm at the hospital with Julie, she is getting an MRI. She has lost vision in her lower right quadrant in both eyes. There are also some balance problems and a little weakness on her left side.Eye doctor sent her to her cancer doctor who sent us her. The doc more or less ruled out a stroke. She has already put Julie on a steroid to reduce any swelling in her brain. Julie has been having headaches and trouble reading for about two weeks.
They will probably put her on a second drug in addition to herceptan, called Tykerb.  Will get more information.. I think radiation treatment might be another option...my thoughts are not as clear as  normal. As if I knew what was normal anymore. I don't think Julie should be driving, so I am concerned about the second week in March when I am supposed to go meet my new boss in upstate NY. I guess one hour at a time. We have an appointment to get the results of the MRI about 9 am  tomorrow. I will update this blog then.

Monday, February 23, 2009

Small Holes in Her Balloon

 
Small Holes in Her Ballon

When I was young
went to a fair
Mom bought us helium filled balloons
my brother and I.

Only safe way to hold
String tied around my hand
Til indoors on ceiling stored.

Waking each morning
I'd pull it down
Watch it rise
bouncing off the ceiling
softer with each new day
til one day the string held it down.

My brother cut the string
freed his blue balloon
in our front yard
let it rise 
out of sight
before it died.

I waited until one day
with string cut off
it just lay there
and when freed outdoors
bounced down the road
until it popped
on the black asphalt.

Julie in the bed
longer each morning
too many small holes
life leaking out
one hope at a time.

Roe
02/23/09