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. 

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. 

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.

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.

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. 

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.

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 .

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.

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.

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.

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.

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.

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.

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.

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

Julie's Back .... Eye Problem ....

Julie just came back from visiting her relatives in Wisconsin, including her dad.  She didn't say much about the trip except to say she did not get enough sleep.  I suspect that is because no one really got it, "she's dying" as she now says simply and usually without any hidden meanings.  She was upset that her dad told on several occasions that she was chunky and that she should lose some weight.  She thought of telling him she will soon, but held back since she was thinking about the future effects of the cancer.

On the ride back from the BWI airport, Julie talked about giving her cadavar to science, assuming they would want it with cancer in it.  She had just gone to a funeral for a relative and she gave me the gory details and then told me how much it costs to get even a cheap cremation. Perhaps, we should just have a bonfire.  Of course, I am sure that is illegal since it is difficult to tax and monitor.  She talked about not wanting hospice or going to the hospital.  I said the hospice was for me, to help me make it through those days ... to have some help.  She didn't seem appropriately sympathetic to me.  I hope she will reconsider as the need for hospice gets more real.

She slept in, or stayed in bed until about 11 am.  I made us some of my world-famous omlettes about noon time.  She left for the clinic to give a blood sample so she can get a herceptin treatment on Friday, I think.  I went back to work, I work out of my house most of the time. 

Julie made us sandwiches with pork and beans for supper.  I had a couple of beers and then some milk and cookies.  I usually use one or the other to fix my internal mental malfunctions, but was indecisive so did both for good measure.

Julie has a cold and is miserable.  She has a new symptom, she has blind spots.  She tried to read out out to me yesterday and it was very difficult for her.  She wondered if her interpretation was right, that she couldn't see the entire word, or if it was the onset of Pick's disease. I am afraid that the chemo did damage to her optic nerve, or worse, the cancer is now spread from her brain to her eyes.  I had insomina last night.

Julie Back Home

Julie went back home this week.  Going home is always a strange experience to me, a kind of surreal step into the past.  Your mind pulls back old images, lost memories and recalls the "old you".  For me, the "old me" has always been stronger than the "new me."  My foundation is strong thanks to my parents, and as much as I hate to admit it, my Christian upbringing (with a few exceptions).

Julie's foundation at home was good, but not as good as mine.  Her parents criticized her a lot, or at least, in her mind they did.  Of what I saw, from the time she reached thirty, her memory and evaluation fits with mine. It is not that her folks were not good people, they were.  But, it was more their style to pass out a criticism than to give a hug.  In my family, the opposite was true.  And at school, she remembers being compared to her old brother, who did great at school.  And, when she went to college, she thought her parents expected her to get married and have kids.  Whether that is true or not, I don't know.  Yet, home, no matter what it was like, is a place we gravitate to for the rest of our life.  I wonder where our kids will call home since I have moved them around too much.  Perhaps, Greenville, except for my son, who will probably think of Georgia as being home.  Perhaps, that is why my kids need more emotional help than I would hope for.

One of the women that Julie went to chemo with, Angie, has declined and has been moved into hospice. Hospice, a nice way to say that her health has declined to the point that modern science can only take away some of the physical pain of dying; dying by cancer an insidious dark demon.  Julie talked quite a bit about her and then attended a cancer support group meeting a few days before leaving for Wisconsin.  Julie seems tired more these days than ever before and spends a lot of time in bed or on the couch.  It is like there is a small leak in the the fragile shell that holds her life force.

Julie in Wisconsin will see most of her family, three bothers, one sister, some in-laws, an elderly dad of 83, and a mom with Pick's disease.  Her uncle is on his death bed.  Her sister-in-laws cousin (I think) just got ran over crossing the street in a wheel chair.  At our age, as her brother Rich said recently, we gather more often for funerals that births or marriages.  Such is the cycle of life.

In case any of you are worried about we losing weight while Julie is gone, don't worry.  I am the omlette king, see above.  Last night I had a pound or two of shrimp with Ashton and the cats and drank a bottle of wine.  I tried to sleep in, but a crow in our tree made a ruckus this morning and Ashton had to go out an bark at him until he left.  Of course, he came back, and Ashton not to be out done went out and barked until I came out and helped him.  A neighbor came over to bring our mail that was left in her box and caught me in the kitchen washing dishes in my underwear in between crow attacks.

I'm not watching much tv much these days, despite the evidence above.  I spend a few hours a day writing, my one real passion throughout life.  I write two blogs, a few poems, and adult short stories.  Often these days, I write sitting next to Julie while she watches her favorite shows like House, Heros, the Phscy?, American Idol, and a few more.  I prefer the animal channel, history channel, or sometimes the depressing news channels.

 Julie and I continue to worry about Olesia.  She moves from one illness to the next.  The latest is that there is a thickening in her intestine.  Pet scans, etc. She continues to move from one doctor to the next with a new aliment all the time.  And yes, they are real.  Out of pocket medical bills for Julie and Olesia, yes after insurance, were about $8K in January.  We met our deductible now, so we drop down to about $2K a month not covered by insurance.  Yep, I worry about how long we can last at this rate .... consulting work has dried up in this recession, so the answer is, not long.  This cancer gets you from a lot of angles and we live in society where there are few life rafts, and these days all the life rafts have holes in them.  Julie pointed out recently that she has a $100K life insurance policy.  Well, that will help.  It will pay off about half of our non-mortgage debt.  It feels a lot like it felt when I was 19 and my dad died and I took on the burden of going to school and feeding a family.  Of course, that was worse because my dad couldn't get good medical help, like by-pass surgery, because we were too poor.  At least with Julie, I believe she is getting the best medical help there is, within reason.  And, I make enough money that I can borrow a lot.  Whow, this is getting a little more depressing than I had planned.

But, no one said life was easy.  I remember when I used to get up to work at the smelter at 4 am before going to my college classes.  I would sometimes fall asleep once I got to work and started putting my work boots on.  When I finally got them strapped on, I would walk from the change room toward the smoke belching, smelter, the air full of sulfur dioxide which made your throat and eyes burn and telling myself as I looked straight down at my boots, put one boot in front of the other.  One in front of the other. One in front of the other, I would chant knowing I could sleep and rest once I got to my class.

Time for tennis.

Acceptance

Julie is outwardly doing well.  However, there is a change of tone around the house, a house that is perhaps happier and more content than it ever has been.

Julie and I were laying in the bed a few Saturdays ago.  We were laying there enjoying the warmth of the bed and delaying facing the day's challenges.  Julie looking around the room, but more at the ceiling said, "it is hard to imagine that one moment you exist and the other you don't."

I responded, "its like the room no longer exists."  And then after a slight pause, "I guess there is no way of knowing whether it exists or not."

And Julie, responded, "its not like your spirit can float around the room.  What bothers me most is not knowing how my children's lifes work out."

About a week later, Julie, Jody and I were talking in the kitchen.  Jody, our neighbor and friend, was working on putting a new wood floor in our kitchen.  The project has been expanded to include the entire main floor, one room at a time. Julie and I had decided to spend some of our retirement now, instead of later.  Jody and I were talking about my work schedule at Dresser-rand.  I told him that I go up to Olean, 60 miles south of Buffalo, once a month and the rest of the time work out of my house.  Jody had witnessed my journey to the basement every day while he and his team worked on our floors.  Out of the blue Julie asked "do you think after I am gone they will want you move to Olean."

I said, "well, I can play the 'I'M-in-mourning-card' for a year. 

Jody said, "at least a year."

Julie, said "only a year."

I replied in jest, "well, that is only the official number."  Julie looked at me trying to frown, but a small smile turning up the corner of her mouth.  There was no despair there, or even unhappiness, but perhaps just a hint of sadness. It has always been hard to peer behind her staunch German demeanor.

This morning watching the news in our bedroom, most of it about Obama's inaugural, Julie asked me when I got to sleep.  I said about half an hour after Olesia got home last night, which was about 1:30 am.  Julie said, "it will be interesting if they come live with you for awhile."

In concern, I said, "both of them."

"Well, either of them." I sighed in half-relief.