Status Quo with Julie

Julie, is "status quo" as she as begun saying.  She is about 1.5 years on Herceptan, which we thought would last about six months, twelve months top.  And she is getting used to the Tykerb, the oral chemo drug to keep the cancer out of her brain, and only occasionally gets sick from it anymore.  If only the insurance company would get the checks here before the next batch is due.  Of course, the next batch will be a big chunk of our 2010 deductible.

sugar coating from July 2008 never published

I don't know any easy way to say this ... and I am not much one for sugar coating something. We got really rotten news this week.

This week been a rough one, especially for Julie. A persistent cough and trouble breathing was diagnosed as cancer on Tuesday. Even worse, it turned out as a very aggressive form of breast cancer that has already spread to her lungs and liver. In a week with too much bad news, her brain and heart turned out to be free of detectable tumors. They will check her bones next week.

Julie had her first chemotherapy on Wednesday night. It was tough for Julie ... sick and in pain. But, Julie, through it all, stayed positive and managed to comfort everyone. I was humbled by her grace in handling it all. The girls are home for the holidays. Allison is going to finish her second summer session since UPenn already got their $5K per course fee. Olesia dropped out of her statistics class. She was not really "in-to-it" anyway. Allison and Olesia tried hard to clean the place up. I watered all of Julie's flowers, wished for rain, and wrote a sad poem. Allison has been scrubbing our house down from top to bottom so Julie wouldn't have to do it .. Olesia helped some. It is a lot of them to absorb.

Best case, it is going to be tough for the rest of this year. Julie is scheduled to take chemotherapy once a week for three months. They will then check to see how the tumors are doing and if good, put her on some maintenance chemo ... No cure has been promised, good news will be if the cancer is held in check for a while. The doctor said that he has one patient that has made it six years. Julie said she would like to see Allison get a real job and to see Olesia graduate. I am starting back trying to work on Monday. Getting my concentration back is my small challenge.

Thanks for all the kind words and support for those of you that have already heard and helped this week.

Robert, Allison, and Olesia

P.S. Ashton, our son (a Jack Russel), knowing something was wrong, refused to sleep in our (Julie, Robert and Ashton's) bed this week. Instead he slept in his dog house outside and refused for the most part to eat. He just moaped around the back yard and laid by himself in the shade of our tree. He showered Julie with kisses when she came home today and then slept beside her for awhile. He said it better than the rest of us how much we missed Julie this week.

http://wonderfuljulie.blogspot.com/

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Cindy Miller to me

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Robert,

Thanks for letting us know. We will keep Julie in our prayers. My mom has had breast cancer for the past 1 ½ years. It spread to her liver, lungs and spine. They gave her radiation for the tumor on her spine. For the breast cancer, she has been on drugs designed to starve the breast cancer cells. Seems hers were feeding on the hormones in her body and one way to attack them is to eliminate the hormones and starve the cancer cells. The down side of this treatment is that all of her joints are in extreme pain due to lack of hormones for strength and lubrication – kind of like severe arthritis. So she’s also on extreme pain medication. The up side is that she’s still with us and the recent scans showed no growth of the cancer cells. They still haven’t been reduced though.

I know Julie is a tough lady. Don’t give up – she won’t. Keep checking out treatments.

I’m glad to hear the girls are helping out. Julie will need lots of rest to handle the chemo.

Please tell her we say hi and keep us updated.

Take care,

Cindy

---

From: Robert R. Odle [mailto:robert.r.odle@gmail.com]
Sent: Friday, July 04, 2008 9:51 PM
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Subject: Tough Weak .... Julie Has Cancer

Friends, Family, et al

- Show quoted text -

I don't know any easy way to say this ... and I am not much one for sugar coating something. We got really rotten news this week.

This week been a rough one, especially for Julie. A persistent cough and trouble breathing was diagnosed as cancer on Tuesday. Even worse, it turned out as a very aggressive form of breast cancer that has already spread to her lungs and liver. In a week with too much bad news, her brain and heart turned out to be free of detectable tumors. They will check her bones next week.

Julie had her first chemotherapy on Wednesday night. It was tough for Julie ... sick and in pain. But, Julie, through it all, stayed positive and managed to comfort everyone. I was humbled by her grace in handling it all. The girls are home for the holidays. Allison is going to finish her second summer session since UPenn already got their $5K per course fee. Olesia dropped out of her statistics class. She was not really "in-to-it" anyway. Allison and Olesia tried hard to clean the place up. I watered all of Julie's flowers, wished for rain, and wrote a sad poem. Allison has been scrubbing our house down from top to bottom so Julie wouldn't have to do it .. Olesia helped some. It is a lot of them to absorb.

Best case, it is going to be tough for the rest of this year. Julie is scheduled to take chemotherapy once a week for three months. They will then check to see how the tumors are doing and if good, put her on some maintenance chemo ... No cure has been promised, good news will be if the cancer is held in check for a while. The doctor said that he has one patient that has made it six years. Julie said she would like to see Allison get a real job and to see Olesia graduate. I am starting back trying to work on Monday. Getting my concentration back is my small challenge.

Thanks for all the kind words and support for those of you that have already heard and helped this week.

Robert, Allison, and Olesia

P.S. Ashton, our son (a Jack Russel), knowing something was wrong, refused to sleep in our (Julie, Robert and Ashton's) bed this week. Instead he slept in his dog house outside and refused for the most part to eat. He just moaped around the back yard and laid by himself in the shade of our tree. He showered Julie with kisses when she came home today and then slept beside her for awhile. He said it better than the rest of us how much we missed Julie this week.

http://wonderfuljulie.blogspot.com/

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Rick Cliett to GinnyDulci, me

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Robert,
It's sad news when someone we love so much is confronted with news such as this. Ginny and I will pray for Julie and for you and your family. If you ever want to talk, I'm in London but you can reach me on my USA mobile (1-865-789-9619) anytime.
Highest regards,
Rick

Richard Cliett Olefins 2 Contracts Manager Petrochemical Industries Co. (K.S.C.) Email: rqcliett@dow.com Olefins II Kuwait C/O Fluor Daniel B.V. P.O. Box 9763 61008 Ahmadi Kuwait Kuwait Telephone: 965-325-2242 Kuwait Fax: 965-326-1043 Global Cell Phone: Kuwait (+965-724-0559) Global Cell Phone: USA (+1-865-789-9619) USA Tel : 1-865-774-0887 USA Fax: 1-774-0674 USA Address 1616 Bluebird Cove Lane, Sevierville, TN 37862 USA This e-mail is confidential and may be privileged. It may be read, copied and used only by the intended recipient. If you have received it in error, please contact the sender immediately by return e-mail or by telephoning 1-865-774-0887. Please then delete the e-mail and do not disclose its contents to any person. I believe, but do not warrant, that this e-mail and any attachments are virus free. However, you should take full responsibility for virus checking. Cliett Chemical Consulting Inc.

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Date: Fri, 4 Jul 2008 22:50:37 -0400

From: robert.r.odle@gmail.com
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Subject: Tough Weak .... Julie Has Cancer

- Show quoted text -

Friends, Family, et al

I don't know any easy way to say this ... and I am not much one for sugar coating something. We got really rotten news this week.

This week been a rough one, especially for Julie. A persistent cough and trouble breathing was diagnosed as cancer on Tuesday. Even worse, it turned out as a very aggressive form of breast cancer that has already spread to her lungs and liver. In a week with too much bad news, her brain and heart turned out to be free of detectable tumors. They will check her bones next week.

Julie had her first chemotherapy on Wednesday night. It was tough for Julie ... sick and in pain. But, Julie, through it all, stayed positive and managed to comfort everyone. I was humbled by her grace in handling it all. The girls are home for the holidays. Allison is going to finish her second summer session since UPenn already got their $5K per course fee. Olesia dropped out of her statistics class. She was not really "in-to-it" anyway. Allison and Olesia tried hard to clean the place up. I watered all of Julie's flowers, wished for rain, and wrote a sad poem. Allison has been scrubbing our house down from top to bottom so Julie wouldn't have to do it .. Olesia helped some. It is a lot of them to absorb.

Best case, it is going to be tough for the rest of this year. Julie is scheduled to take chemotherapy once a week for three months. They will then check to see how the tumors are doing and if good, put her on some maintenance chemo ... No cure has been promised, good news will be if the cancer is held in check for a while. The doctor said that he has one patient that has made it six years. Julie said she would like to see Allison get a real job and to see Olesia graduate. I am starting back trying to work on Monday. Getting my concentration back is my small challenge.

Thanks for all the kind words and support for those of you that have already heard and helped this week.

Robert, Allison, and Olesia

P.S. Ashton, our son (a Jack Russel), knowing something was wrong, refused to sleep in our (Julie, Robert and Ashton's) bed this week. Instead he slept in his dog house outside and refused for the most part to eat. He just moaped around the back yard and laid by himself in the shade of our tree. He showered Julie with kisses when she came home today and then slept beside her for awhile. He said it better than the rest of us how much we missed Julie this week.

http://wonderfuljulie.blogspot.com/

Robert, Julie, Allisonn and Oleisha,

I can't express in words how much my heart goes out to all of you at this time. I can't imagine how hard this must be for all of you. My thoughts and prayers will be with you.

Shari

This is Love

Came home today after walking Ashton and stopping for 3 beers at Jody's and found Julie unable to get off the couch and having a bowel movement.  She was trying to put on a second depends to contain the problem.  I had her give me a bear hugs and I carried her up the stairs, sat her on the toilet and undressed her.  Seemed like it was all done, so I undressed and had her give me a bear hug and took her into the shower to clean-off.  When we started to get out, she had diarrhea so we stayed in the shower for a while and I cleaned up again.  I got her out of the shower and her legs went out completely and she went down on her knees.   I dried her completely and had her give me a bear hug again and I lifted her and carried her to the bed.  I cleaned her up some more, put a depends on her and then lifted her again and got her on her side of the bed.

She had not said much during the whole thing.  When she was finally in bed and I was standing there soiled and covered more with sweat than water, I asked her, do you feel like I love you.  She gave me the biggest smile and nodded.  

I went back to the shower to clean up me and the shower and then went downstairs and cleaned up and stared doing laundry.  Found Olesia had not finished her job so her stuff was in the way.  I then went and picked up all of the art work beside the bed and put it on the table, Olesia's job not finished.  Then gathered all of Julie's med and started a spreadsheet to administer the meds.  

I am now writing this note.  I always new, well for the last couple of years that this day would come.  I had always dreaded it.  But, through it all, I just said to myself, this is what it means to love someone.  And, it didn't bother me.  My back is killing me.  I have incredibly strong legs, but kind of an average back.  Julie after all the steroids is about 170 pounds I would guess.  Not so easy to lift and move upstairs, into a shower and then to bed.  

Yes, the day for hospice has arrived.  But, I have to make it through tonight first, and probably the weekend. 

I think this is the last post ... don't have the energy to do this post, face-book and take care of Julie. If you want to see the rest, join me on face book or ask someone who is on facebook for the news. 

Julie Update 20100710

Julie 20100710

Things are continuing south.  Julie struggles some days to walk and at best it is a shuffling gate, with steps about 12 inches long.  She slid off the bed the other day and I had to help her get out of the floor.  She takes pain pills, hydrocodone acetaminophen (but I suspect she will need something stronger before long) to relieve the pain in her legs.  Her legs are swollen, I have lost the prescription for the stockings, and a few other things I can’t remember.  Why the world has to push paper around any more is a great mystery to me.

After two weeks I convinced Julie we should move up her appointment with the doctor.  Her doctor was out of town, but we saw Dr. Khatri, who is a great doctor also.  He listens.  He listened to me and then ordered a Pet Scan, and three MRI’s, blood tests, etc.  Oh yea, that is what I am missing, the blood tests.  Should have gotten those yesterday.  Putts.  Julie has always been the one to remember such things.

I also got Dr. Khatri to reduce the steriods.  He pretty much got it all right.  I think I could be a medical doctor quickly, except for all the school, regulations, licenses, etc.  But, I digress.  A little levity seems to be all that stands between me and insanity some days.

Julie had her first “mess” despite the Depends last night.  I always thought it was going to bother me, but I got up and did most of the clean up last night while she took a bath.  I thought a shower would be best, but Julie still does stuff her way.  In fact, at times she resists me helping her.  Reminds me of her mom who even after dementia had taken away most of her facilities would not let John, her husband, help her, but would let anyone else.

Did four loads of laundry.  Trying to get Olesia to do Laundry and Grocery Shopping as her chores.  Gradually build up to three chores is the hope.  She seems happier, I am not sure if it is the drugs (<$1000/month) or being back home with less stress.  Don’t know how she will deal with her mom’s condition when she finally pays attention.

Consulting is slow, but there is some.  Worse case is that I will be out of money in about two years and be back to where I was at 19 when I started my journey of taking care of myself, etc.  I write a lot these days, hoping to hone my skills to write novels when the current trials are over.

We get the results of all the scans on Friday.

(P.S. most of my updates these days are on Facebook, gradually phasing out this blog.)

Wonderful Julie

Diary 2010 

20100703 Thoughts / Wonderful Julie

We've had easier months, Julie, I, and Olesia, the current inhabitants of our house.  Second week of June, Julie and I attended her mom's funeral in Wisconsin.  Travel was tough on Julie, but she sucked it up, and I was the only one showing any signs of stress at the airport, funeral, etc.  Pleasant funeral as funerals go.

My company insisted that I move to Olean on June 21.  In reality, I think they were unhappy with my performance on the Acid Gas program, I was unhappy with the lack of support and direction of the program, so we agreed.   But, taking care of Julie and moving to upstate NY was not a possible combination, so I resigned. Made 4 years, the longest employment I've had in my life.  I've had two decent consulting jobs, so far, one is continuing.  I am participating on two DOE grants for making solar grade silicon.  I want to write up a patent idea I have for magnesium.  I have a good lead on a patent infringement case on processing hazardous wastes.  And, I hope to get some consulting working helping write SmartMaterials back at my old job.   And of course, any day now the magnesium project that I have been working for eleven years or so is going to sprout wings and fly.

Now, how is Julie doing.  Well, six weeks or so, they gave her palliative radiation treatments on a lesion on her spin.  The lesion (tumor) was (is) adjacent to her spinal column, so they could not be very aggressive with the radiation treatment.  In my opinion, much of the symptoms have got worse since then, bladder control non-existent, feet swollen (from steriods ?), walking hobbled and restricted, balance poor, tired all the time, and frequently her legs are in pain.  

Olesia came down and got me the other night.  Julie was rearranging her shoes in her closet, one of many projects she is taking on that are a great mystery to me, and then got too tired to continue.  Olesia found her curled up in the fetal position in the closet, but Julie told Olesia she was okay.  That is what Julie would say whether it was true or not.  I came and sat with her in the closet and talked with her for about five minutes and then helped her back to bed. 

I lost my cool a few nights back.  Julie had got up to change her depends about 2 am and occupied our bathroom.  So, I went to the other bathroom and found it so full of clothes and stuff on the floor I could not push the door open enough to get comfortably to the sink.  I lost it and started throwing her stuff with some force into the bathtub thinking it was only clothes.  Well, there was some hard stuff, don't know what, and it slammed into the bathtub wall with a large noise.  That didn't stop me from throwing the rest of the stuff into the bathtub and then using the bathroom.  Moments later, Olesia was yelling at me to use my own bathroom, I was yelling at her that I needed more help around here, and Julie was trying to calm us down.  I was also upset with Julie at all the projects she is starting (and not finishing)  -- I feel like the plague of disorder that starts in my daughter's bedroom is spreading like a full blown epidemic throughtout our house.   Julie said she was dying so what did it matter; I didn't answer and just went and tried to sleep on the couch.  Ashton made it too crowded there, so I came back to bed about day break and got about two hours of sleep before my big meeting.  I was lethargic in the meeting, but hopefully my science carried me ... I kept forgetting names.  Olesia and I talked the next day over some Reese's peanut butter candy that I got for amends.  I said I was sorry to both Julie and Olesia, and she was helped out some over the last two days.  She still has no grasp of how much work it takes to keep this house afloat and earn a living.

I try to write some for sanity, and dream of the day when I can do it most of the time.  I plan to downsize after Julie is gone.  Find a cheap yard for Ashton and the cats, somewhere to be determined.  Then consult enough for bread on the table and internet for the computers, and write and play tennis the balance of the time.  Lots of great novels planned and in progress in my head.

When It Rains It Pours

Diary 20100528 When it Rains it Pours
For four years I have been working out of my house, going into the company facility in Olean, NY for a week, once a month.  Great setup for me.  About six months ago, we got a new boss over our group and a new manager.  Well, life changed.  I went from Joe Brilliant to Joe Idiot, apparently.  Got in a fight right off hand about an unsafe product we were making. 


Well, this week they gave me an ultimatum, I have to move to Olean by June 21.  I said my wife didn't have that long to live and I was not moving her or me to Olean.  They basically said life is tough and then you die.  Even if wanted to move to Olean, not that any sane person would, but even if I did, there is no way I could make that happen in three weeks.  And, who would want to work for a company that gives the ultimatum without first asking about how my wife is doing?  And what kind of people don't factor that into the deal?


And of course, they say it is a performance issue with me.  And I have to admit that with the new bosses that never ask me about what I am doing except for five minutes in a meeting every few weeks and with the added stress of my wife, I would agree my performance has not been as good.  Has anyone asked what they could do to help?  What could be done to improve my productivity?  Does anyone care that the acid gas project is still operating on a plan made four years ago that is not relevant.  Does anyone care that we are just going down a checklist and saying we are on schedule and on budget with stuff that is not important while we ignore important stuff.  Does anyone care, nope.  If you get stuff done that doesn't need to get done, and do it on budget and schedule, then everything is okay.  For those of us that like to make a difference, to contribute, it is a formula for failure.


Anyway,  checking out my options.  


The greatest mystery to me is why they don't just fire me?  Are they afraid of losing a slot, they would rather get a replacement first because they might lose the slot.  Does my meager salary help them spend the R&;D budget?  Do they want me to quit so they gave me an impossible ultimatum.  That seems the most logical, at least that is the best explanation I can come up with.


They have really made my wife and kids love the company.  But, that is what they expect of big companies, so it does not surprise them much.  Of course, I was trained by Adolpho Brusoferra an Italian that made my life hell for about a year.  This is fun by comparison.  


Okay, did a little venting.  Julie had her herceptan treatment today and her tumor markers were still low.  They are supposed to indicate the activity of the cancer.  On the physical side, Julie shuffles when she walks and seems to get slower everyday.  She has some good medicine to stop the pain in her legs.  She still does not have much feeling below the waist and must wear Depends.  It is sad to see cancer taking another small bite of her every day.  She has gone to bed already.   


Anyway, hanging in there.






  

Palliative Radiation Therapy

Diary 20100521 Palliative Radiation Therapy

Julie completed five days of palliative radiation therapy. Palliative treatments are used to reduce pain and improve patients' quality of life. To palliate means to lessen the intensity of something. Many of the same techniques used to contain cancer also are used for palliation. By reducing the number of cancer cells, radiation treatments can ease pain, stop bleeding and relieve pressure, even when the cancer cannot be controlled.

Palliative radiation treatments can be especially helpful for cancer patients who have:

A cancer that has spread (metastasized) to the bones or brain.
A tumor that is pressing on the spinal cord and could affect the ability to walk or move.
A tumor that is making it hard to eat, breathe or have bowel movements.

The choice was made not to treat other tumors/lesions that were on her spinal column.

Julie is in good spirits, her walk is a little unsteady and she is still in some pain in her legs and butt. They are giving her some pain medicine and patches. She still tries to do some work around the house like laundry and she puts dishes away. She wants Olesia to take her to home-depot tomorrow to get birdseed and water softener salt that I let run out.

Called Into the Doctor's Office

Diary 20100514 Called Into the Doctor's Office

We sang along with my new XM radio on the way to the hospital, Norwegian Wood by the Beatles was the only real song we knew.  We faked the other ones. 

She made funny faces as I tried to take some pictures of her in her hospital bed for Facebook pictures.   She is in good spirits and trying to watch the news on tv using her touch screen screen.   She has already crashed it a couple of times and I am sure would prefer an old fashion tv.  She can even do Internet.

Well, the news is that she has a tumor on her spinal column, looks about the diameter of a quarter.  It is about half way down the her spinal column and it is blocking the function of her bladder, bowels, and her lower legs.  They are going to put her on massive steroids for 48 hours, do some maintenance work, and start her on radiation treatment on Monday.  They also plan to do more MRI, bone scans,  etc. to make sure the one tumor they found last night is the only one.  

The hospital, Christiana Center in Newwark, DE, is about 30 minutes from my house.  It is the same hospital that my old boss, Rick Corbett, was in about four years ago.  His was not a happy ending.  But, it is about as modern as cancer hospitals go.  

Of course, modern hospitals still only have one way communication, it comes from the doctor the patient.  Julie is hungry, but is not allowed to eat because the doctor hasn't authorized food.  Probably because she doesn't know that Julie hasn't eaten.  If we had of eaten on our way over her, then it would have been okay.  So, modern hospitals suffer from top down communications just like in the old days.   No way to communicate to the doctor to tell her that Julie is hungry.  So, I am not impressed with brilliance of this place if they can't get two way communications going.  It is a little thing that she is hungry, which she takes in good graces, but it bothers me.  I want to eat but feel guilty doing so, so I don't.

I have to get home and walk the dog soon, feed the cats, etc.  Cook a sausage dish that Julie started and didn't finish that's sitting on the counter.   Yea, I am babbling and not dealing with the real thoughts going through my head.  My younger daughter called and said she was praying for mom.  She has a sinus infection which has spread into her eyes.  She is always sick with something, not a well person.

Julie sent me home.  One hail of a thunderstorm, biggest I've seen in forever, the kind that breaks your windshield on the highway, almost.  Ashton, our Jack Russell,  had got his chain tangled up and was just sitting in a down pour.  Most of the time when I leave him I just leave him on his on recognizance since he is honest and trust worthy.  We have no fence, he just knows our yard.  Although he does chase bunnies, herons and crows across property lines.  He knows we do not like herons because they eat our pond fish and he decided on his own that crows are not to be trusted either.  Large black birds are okay.  They don't go caw, caw, which Ashton takes as an insult.   He also tells me they eat fish. 

Oldest daughter texted me that she cried at my text message.  And, they got Julie food at the hospital since the doctor visited and two way communications were temporarily restored.  Its going to be a long night for Julie, she is in some discomfort.  A few or more screw drivers will be my best friend with Ashton now sleeping beside me.  He helped me eat a chicken.  I don't have to eat by the rules when Julie is not here.  I usually just eat the first thing I see, it is a simple system and the same system that a bear uses.   My son argues that I do not eat everything that a bear eats, but the jury is still out on this one.  I am willing to adapt with some lessons from a bear.  Whow, a chick can make you full; Ashton is out of it.  More later.

MRI Stat at 10 PM Tonight

Diary 20100513  MRI Stat at 10 pm tonight


It has seemed kind of like a magic time.  Herceptan keeping the cancer out of her body and Tykerb keeping it out of her brain.  It was easy to forget that the doctors told us that that they could only contain it for awhile.

Shortly after going on Liptor a month ago a series of problems started with Julie, probably not related to Lipitor, but an unneeded prescription anyway.  If she lives long enough to have a cholesterol problem, then everything has gone great. Over the last three weeks some symptoms have sprung forth very rapidly in retrospect.   

Julie has pain and numbness of her legs below her knees. Her sciatic nerve hurts on both legs.  She has lost control of her bladder (inconstancy) and is constipated.  She says it feels like there is a golf ball side lump inside her rectum and she has lost feelings in both the butt and groin area.   Her walking as become hobbled and her balance unsteady.  
Dr. Hosford, her oncologist examined her this morning, and sent her for an MRI STAT.  The earliest they can get her in is 10 pm tonight.  So, it will probably be sometime before noon before tomorrow we hear the results.  Dr. Hosford called her tonight asking when the MRI was scheduled.  She is a good doctor and a good person.

Pushing Back the Wind 

When I was a teenager, my dad, a heavy smoker, had several heart attacks before the last one got him.  He worked as a mechanic one block from our house.  My younger brother already as tall as my dad, about 5'7", was visiting the shop he worked at behind a Texaco.  Dad was having trouble breathing and felt weak.  He waited until quiting time and headed home, walking as usual.

In West Texas they have some horrific wind storms, the sky full of red dirt, the sand tearing at any exposed skin, wind gusts up to 60 mph are not unusual.   Well, this was in the day before all the paved streets and for those of us that lived on the edge of the desert, close to where primitive life had gone on for millenniums.   Well, this storm as I remember was not this severe, just your average West Texas wind storm.

My dad and brother started home and it became clear that my dad could not make it against the wind.  My dad and brother both told me the story at different times.  My brother, Alex, moved in front of dad without being asked and slowed his pace way down knowing my dad was unlike to admit that he needed help.  At a snail's pace they worked their way home without speaking.  When my dad got home, he drove himself to the doctor's who admitted him to the hospital for a couple of weeks to recover from a significant heart attack.

Yesterday, we had relatives visiting,  my wife's brother, sister-in-law, their daughter about twelve and their son about eight.   My youngest daughter and I had a great talk while I burned up the hamburgers and asparagus.  She is having problems with depression and pointed out that she has some of the great empathy with others like I do.  It was a compliment on her part, but it lead into a discussion on how hard it is for her to manage her feelings the pain she feels all the time.  As I listen I learned again that her emotional makeup is very similar to mine.  Difference is, she is on a much steeper learning curve at 21 than I every was and she has really poor health.  The end result is that she is clinically depressed and she is dropping out of college.

After the barbecue we did the traditional everyone walk the dog around the block event, all eight of us plus the dog of course.  The two cats declined.   The wind was gusty, the type that  often comes before a thunderstorm.  I was worried about Julie going, she seemed tired to me, but she said she was fine.   It is about a mile around, a comfortable walk for a healthy person.  Julie walked very slow from the beginning, her brother Rich and I stayed back with her.  Ashton, the dog, made periodic journeys between the two groups to see that everyone was okay.  About half way around I moved over and took her hand.  It was then obvious to me how much she was struggling. We held hands letting her put as much weight as her right arm as my left arm would bear.  

The front group had slowed down and come back to us.  I didn't see when Olesia, my youngest daughter, moved in beside her mom, but there she was holding her mom's left hand in her two hands, struggling with the weight of her mom as Julie moved forward slowing with time.  The rest of the group was around us talking and laughing and having a good time.  Julie never said a word and no one in the group knew she was struggling except for Olesia and I.   She never told me, she wouldn't even tell me, but I believe her calves were cramping up and it had become very painful to walk.  We got back to the house, Julie and Jill, the sister-in-law, went inside and I turned on the gas fire place.

The rest of went out side and played hide-and-seek in the dark in the back yard.  Ashton helped the seeker find select people, mostly me and my older daughter, Allison.   You can't really hide from a dog in the back yard, even in the dark.

The walk around the block is an event that Olesia will remember the rest of her life.   It seems a small moment in the unfolding of her life, but an important one.  She noticed when almost no one else did that someone was struggling and reached in and helped without saying anything.  It wasn't about her hurting, which she is, but about someone else needing her help, someone that is too proud to ask for help. 

20100509

  

All is Stable on the Home Front

Julie got an MRI and Pet Scan two weeks ago.  Her appointment last week to review the results with her doctor were rescheduled for a nurse practitioner.  Then the nurse practitioner cancelled.out.  We assume that since they were not in a rush to tell us the results, it must be good.  When Julie got her Herceptan / Zometa this week, the nurse whispered in her ear, the results were normal.  So, visits are rescheduled again this week to see the doc.


Julie also dropped down from 5 Tykerb pills, which is supposed to stop the cancer from going into the brain, to only 4 pills.  This pill gave her diarrhea and gas all the time.  She says she almost fills normal on this dosage.  I have noticed that she is doing a lot more and has even worked in her garden some this past week.


Who knows how Olesia is doing.  She is open for Spring break, I haven't seen her study.  She had Strep throat again.  About a dozen times in her life so far.  She is still recovering from Mono and is now on antibiotics for Strep. She is sick a lot and does not have good study habits or routine sleeping or eating habits.  She is also struggling with IBS, fibromyalgia and allergies.   We will be lucky if Obama-care passes, otherwise when she drops out of college she is not going to have medical care since we will no longer be able to keep her own our policy ... and it is unlikely that she will be able to get insurance with her pre-existing conditions.  Bummer. 

Wisdom from the Bottom of a Whiskey Glass 20100120

Wisdom from the Bottom of a Whiskey Glass 20100120

One of the side effects of cancer is the collateral damage.  In this case, my youngest daughter, 20 years old, lets call her Oli.  She is a Junior in the University of Maryland and about to flunk out.  She is on probation after only passing one class last semester.  No, it is not partying too much.  She slept, and slept, and slept through everything.  When she comes home to visit she sleeps.  The doctors, those for the body and brain, are both worthless in identifying the cause.  She is smart enough that she can smoke everyone.  She tells them what they want to hear and they say she is fine or sick with a specific aliment based on what Oli wants them to believe.  I have watched her dance around doctors her whole life.  She is stubborn and wants to be in control, even if she is on the Titanic. 

My best diagnosis is depression from three things (1) her mom's cancer, and (2) she really doesn't know where she wants to go in life, and (3) her general health is not that great.  She has no plan, she procrastinates and she avoids the hard questions.  

And whow, does it hurt to watch this happening.  I woke early this morning and made her a poster that said:  With Procrastination everything is harder until it is impossible.  Signed, trying to save you, Dad.  Our relationship is pretty good, and she doesn't try to smoke me like the doctors, but she just tells me, I don't want to talk.  I wish I had some magic.

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

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."