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

Wednesday, February 18, 2009

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.

Saturday, February 14, 2009

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.