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.