Julie in Paris

Doesn't Julie look pretty in this picture.  A certain amount of contentment on her face.  She is in Paris looking at artwork done centuries ago.  I only regret that we didn't stay longer.  Four days in Paris is not long enough, but as usual, I learn only after making a mistake, seldom before.

Palace of Versailles and Art Work of Jeff Koons. 

Whow what a castle.  I have never seen anything like it, or imagined, anything like it.  The amount of wealth measured in the human effort to create it is absolutely amazing.  It is audacious beyond belief.  There is a room, about a football sized room, that has paintings, huge paintings around the circumference.  It shows seven centuries of victories by France against its neighbors.  But, building castles and winning wars took it toll.  Soon the bellies of the people, the empty bellies, caused an uprising that overturned the powerful.  The castle is now just a symbol of those times, a beautiful symbol, but nothing more.  And we were there.  I appreciate the insight it gives me to America.  Julie, I suspect, appreciates the art.  She has the talent to do great things in art, but probably not the opportunity to get the exposure required to make it as an artist.

Now, isn't that a beautiful couple.  Whats the name of the river that runs through the middle of Paris.  Well, it is behind us in this picture artfully composed by myself.  I lost the battery to my good camera and this is my cell phone bringing you these classy pictures. Yes, it was cold, but it briefly stopped raining to allow this picture.

This is Julie in a small cafe next to Notre Dame.  We had hot wine and crepes.  Julie had some messed up carmel crepes, ugh, while I had some maple, cream and banana crepes.  I would have had another glass of hot wine, but service in Paris is not all that good.  But, they make up for it by being very expensive and speaking French.

I am going to put together a google web-show of the pictures and put a link in this blog, but for now, one last picture.

These are cat mummies from Egypt in a Paris Museum.  For all of you cat lovers, perhaps we could restart this old custom.  It makes great stuff to put in your display cabinets at home.  More later from Julie and Robert, back from Paris.

Back from Paris

Well, I could almost keep up with Julie in Paris.  She was in hyperdrive.  Even Ashton would not want to walk as much as we did going to see museums, castles, arches, rivers, etc.  Great, absolutely great food, especially desserts.  Some great draft beers.

Paris was raining and cold.  Julie got a cold from her effort.  I got a sinus headache from all the dry air on the plane and our hotel.  But, we are fine.

Versailles Castle was audacious. It is easy to see why the French people revolted.  Kind of like Fuld who was the President of Leeman Brothers bank who walked away with $480 million while his bank was going bankrupt. Same story, just a different century.

Perhaps on the last email I misled some.  Julie's Petscan was clean, no cancer detected .... but, with this kind of cancer, they KNOW that there are still a few cancer cells left (below the radar so to speak) that will come back.  When they do come back they will be resistant to the first type of chemo treatments she received.  In short, the calvary, the most effective drugs, will probably not work the next time.  They then pull the second bag of drugs from their arsenal, etc. until the bag is empty.

Every three weeks Julie will get Herceptan, which is supposed to interfere with the cancer drugs multiplying.  They will continue this as long as it works.  The good news is that for a few people this can last for years.  Keep your fingers crossed.  They are also debating whether or not to remove what is now a small tumor from Julie's breast.  If it becomes active, it could grow out onto the skin and be difficult to treat.  But, Julie has not decided yet whether or not she will have it removed.  It is dormant for the moment.

Julie has seemed more tired than normal since her return from Paris.  Her cold and the excitement of the trip in the past, I guess it is normal.  I don't like to hear her cough from the cold or clear her throat, because in my mind it sounds just like the cancer.  I guess that is just the baggage that comes along with this disease.  

Paris Bound

Julie and I agreed that if she made it through the first fight with cancer (5 months of chemo treatments), we would go somewhere special.  I was thinking the Carribeans or similar.  Or one of those cruises.  Or Mexico or Panama.  Well, work said I needed to go to Paris this week and talk to Total Oil Company.  Julie, said she wanted to go.

So Monday I leave for Paris. Julie follows on Tuesday.  We fly together on Sunday back to Philadelphia. 


Julie's last pet scan showed no cancer in her lungs, liver, heart, etc. Bones are still in question, but probably okay.  Julie's blood work shows her red blood cells are in the normal range.  Her white cells are still down but improving.  She will be on Herceptan every three weeks for the rest of her life.  They will go back to chemo, we are told When not if, the cancer returns.  But, until then, we are trying hard to learn to live in the moment and enjoy each other.  We are doing better with staying happy and in the present.


Well, more later.  Getting ready for Paris.

D-day

Uncle Floyd and Aunt Minnie.  My Uncle was a horse, in his early 80's he did roofing work in El Paso in the summer.  Aunt Minnie was a fire ball.  I saw pictures of her in roaring twenties and she definitely contributed to it being called the roaring twenties.  But, when I knew her, she was always old.  She still had a fireball for a mouth to put it kindly.  But Uncle Floyd would listen to her fuzz at him for about five minutes and then say firmly, "that's enough."  And, then she would stop.

When Uncle Floyd was about 85, he drove his Aunt Minnie to Marshal, Texas from El Paso, about a 14 hour drive.  They went to bed.  Aunt Minnie raised up on her shoulder shortly after going to bed.  Her brittle bones broke; her bone split from the elbow to the shoulder.  Uncle Floyd got up and drove her to the emergency room in Marshal, then to Texarkana.  In Texarkana, they told him it was best if he took her back to El Paso.  He did. Back in El Paso, he took her to the doctor and they fixed her up.  Uncle Floyd at 85 had been up to take care of his girl, his roaring 20's girl, for nearly four days without sleep.  He took his roaring twenties girl home, put her to bed and then he died.

I saw Julie's old passport picture this week.  She reminded me of my Aunt Minnie's picture.  She had to take off her scarf to take her new passport picture.

On November 19 Julie gets another Petscan.  The doctors have dropped back to Herceptan, which is a maintenance drug that is supposed to keep the cancer cells from multiplying.  They want to end the chemo, at least for now, because they are afraid of nerve damage.  The symptom, Julie's feet alternate between being numb, tingling and hurting.

On the second week of December, Julie wants to go to Paris with me.  I am going there on business, Julie wants to tag along.  All we have to do is figure out the pets and we are good.

My New Hero

Well, I told Julie today that I have a new hero.  First, my old heros.

Mohammid Ali.  Do I need to say more.  The one that said "I don't have nothing against those googs."  The army was trying to draft me at the time.  He gave me the courage to try to be a conscientious objector.

Dr. Frank E. Rizzo, a professor who believed in me.

My dad, who  also believed in me.

Ronald Reagan, who believed in America.

And, now Julie.  Who always says she is doing fine, no matter what.  We did the 5K Cancer walk on Saturday, then drove 2 hours to Maryland College Park.  We walked around for a couple of hours with Olesia showing us her college.  On the walk back to Olesia's apartment, Julie got tired and asked us to go get the car.  We did.  After a short rest, Julie went shopping with Olesia at a linen store.  We drove home for two hours and went to bed.

I got up this morning and went to play tennis.  Went I got home, I told Julie she was my new hero.  She laughed, but its true.  Most of my heros I never knew well.  It is easy to have heros when you don't know someone well enough to know their faults, their shortcomings.  But, I know my wife's shortcomings.  And still, the way she has handled cancer, I can say with confidence, I have a new hero.

They told Julie last week that they were accelerating her chemo treatment because of the nerve damage.  Her feet are tinging and loosing feeling.  I hear it and think bad news.Julie just says she is glad it is not her hands so she can still do her art work. But, it says we are getting to the end of what can be accomplished with chemo, or at least the type she is now getting.

Better Week

Julie's white blood cells recovered last week which allowed chemo to proceed.  Julie, I and a friend (David Noble) did some hiking at Turkey Point.  Julie did well, sitting only one time after a steep climb up the hill.  I was behind her and breathing hard myself.  Julie's back has been hurting some today and she has spent most of the day in bed, in part, worn out by the hiking and perhaps some by having company.  Allison also came to visit on Sunday.  She needed her rent paid, etc.

Tomorrow at 8 am they are doing another mammogram on her breast to check the size of the tumor.  Originally 2.6 cm, I think 1.6 cm after the first three batches of chemo.  We would like to have it cut out, but the risk of infection for Julie is too high now.

She is upstairs clearing her throat.  A sound I hate to hear.  It has only been three months, July 1, since the diagnosis.  It seems like years.  They are good times when one can stay in the present.  Julie's dad, John, wants to visit.  She suggested that he come to visit with Russ and Chris since that would be less work on her ... they would entertain him some.  But, John thinks that would be too big of a crowd so he wants to go at another time.  Julie's sister is coming next week for a week stay.  I plan to be in Olean for most of  her stay.  Olesia wants mom to come down for Parent's day at the University of Maryland at College Park.  Julie also wants to go on the 5 km cancer walk at Fairhill this week.  Hard to keep up.

Crap, Crap, Bad News

First, I wish I knew how to spell crap.

Julie couldn't get chemo this week, giving the cancer a week off from being treated. The reason, white blood cells are done. I assume this means her lymph glands, which I think make the white cells, are not making enough white cells. Why, I assume because the chemo is attacking the lymph glands. This has happened about three times. Bummer.

Good News

We got some good news today.  Julie had a cat scan about 10 days ago.  We reviewed the scan with the doctor today.  Most but not all of the cancer is out of Julie's lungs, there is still a significant amount left in her liver, and her adrenaline gland has shrunk back to normal size indicating the cancer is almost gone there.   The tumor in her breast has shrunk from about 2.6 cm to 1.5 cm.   Her lymph glands are almost back to normal size.  

On the other side of the coin, Julie's toes are tingling some indicating the chemo is doing damage to the tissue around the nerves.  Julie is getting three growth shots (steroids) a week to keep her white blood cells at an acceptable level.  She got a blood transfusion to keep her red blood count up.  She has been tired more than usual and is gaining weight, a side effect of the steroids.  I am gaining weight also, cause not yet determined, but food is suspected.

Julie has just started the fourth set of chemo of six sets.  So, half way through.  Chemo is working but it also getting tough on Julie.   Of course, when the doctor asked Julie how she is doing, she said, as always, fine.

 

Living in Doubt

Well, I am leaving for New York in a few hours leaving Julie alone, well with Ashton and the cats. 

Last week was not quite typical.  Two trips for shots, one for a blood test, and a blood transfusion and cat scan instead of chemo.  Julie's red blood count was too low for chemo, so they topped her up with a couple of bags of red blood.  Seems like at some point you would get full and your blood pressure go up, but they said no, she would just pee out the excess fluids and keep the red blood cells - convenient.

Julie was tired more last week than normal.  She had a cough and throat clearing episodes on Monday, which were the first signs of cancer three months ago.   Of course, when this happens it makes me fear the cancer is coming back.  The coughing and throat clearing seemed to disappear as the week went on making me somewhat less fearful.  However, she has started having indigestion and acid reflux a lot lately, which of course makes me afraid the cancer has spread to her stomach or esophagus.  I assume all these fears are normal, but I don't like them. 

Every hug and kiss with Julie these days is precious.  Her laying on my shoulder at night, on the rare occasion that Ashton allows this, is almost more emotional than I can deal with.  It feels great, it makes me happy and sad all at the same time, and it scares me.  The fear is my inability to stay in the present and not think about the future.   All of this messes up my mind more than anything else has for about forty years.  I consider myself a strong person and I believe I can make it through most things better than most, but the uncertainty makes this harder than most.

We went to the Delaware Fair yesterday.  My sandal broke a couple of blocks from the car.  I went bare footed and fought with Ashton, who is very strong for 22 pounds, as we walked the Delaware grounds.  Big place.  Julie went to her Master Garden booth to see how everyone is doing.  I tried to keep Ashton from attacking all the other dogs that walked by.  He nipped a large puppy that came up to him.  Embarassing.   Julie got pumped up and then stayed that way the rest of the day.  We walked Ashton when we got home, he didn't think the Fair qualified as his walk.   We watched two movies, Michael xx, and Gloomy Sunday.   Nope that was the night before. No, last night Julie worked on her dolls until late.

Julie seems more intense on getting her dolls done these days.  She stays up late, until she is too tired to work anymore and then comes to bed.  She rests much more than usual and watches tv from the bed for a few hours every day.   But, when she does get up, she is more focused on projects than normal.   Her garden projects are finished this year.  Jody and Peggy, our neighbors, have been mowing our yard.  Both are busy with their lives, but have found time to walk over and spend time with us.  Jody and I drink beer, our common ground, and Julie and Peggy talk about raising kids and other similar topics.   It is unfortunate that it takes cancer for neighbors to get closer and spend time together.  But, that is the life style (being too busy paying the bills, etc.) that we have chosen in America.  I digress.

Well, all is not dome and gloom.  Julie had a nice send off for me to NY.  But, she said not to put it in the blog, so I won't.

Missing Julie

From an airport in London, with a broke phone and my flight in 4 and 1/2 hours, after flying eight hours from Oman, I would like to call and talk to Julie. But, it is 7:30 here and I guess about 2 am in MD. And my phone screen is broken.

I hope the chemo is still working well and that Julie is enjoying her life and freinds. Everyone continues to be great and support her and us. Living with the now, ignoring the uncertainity - the wild card of cancer - is easier when we see the chemo working. Enjoying life is easier when her friends share the now with her. Not so profound, but true.

Muscat Hotel

Since my phone is broken and I had not heard if Julie was doing well for three days, I borrowed a phone and called Julie. She was in the doctor's office. It was good to hear that Allison was with her. Julie said she was okay, but no matter what that is what she would say. From Oman, without a phone it is hard to tell.

However, she assured me that Ashton had started sleeping with her again, which means he was upset with my leaving, not with Julie's health. It is strange that Ashton's return to her bed (he is a Jack Russel), would make me feel better. He seems to know when something is wrong before we do. I had hoped someone that had spent some time with Julie would have emailed me to assure me that all is well, but I guess not that many read this blog anymore.

The opportunity for build a magnesium plant that I have worked on for nine years is about to happen, perhaps. I got some poor vibs the last two days. Perhaps, it is my vibs about Julie being more important to me than any project, no matter how long I have worked on it, or no matter how much money I could make on it .... perhaps millions ... has been conveyed to others as not being fully committed, which I am not. And as usual, perhaps I talk too much and I am too honest. Well, which all goes to prove that fighting poverty is my Karma, as they say. But, it has only been 41 years since I took up the battle in earnest. I have moved ahead of poverty in the middle of the race, but I always feel that it will catch me again before I reach the finish line. Of course, Julie would be glad to go across the finish line and not pull up lame. I think when she does, I will stop and help her and poverty will race ahead of us.

Oman Hotel

I'm in a plush hotel in Oman, drinking a beer during Ramadhan. I'm told it is okay in my room. If caught drinking or eating in public during day light, you go to jail. I guess you stay longer if alcohol is involved. They say Saudi is worse. I don't know how.

Despite these rules, the towns are very modern with no homeless people to be seen on the streets. People are very friendly here and very hospital. Of course, this hotel is $300 per night, so they are paid to be friendly.

You need a license for everything, kind of like our system where you are taxed on everything. Anyway, what I wonder about at the moment is how Julie is doing. My phone doesn't work here and just to make sure, I broke the screen. I get back to Philly on Friday, Sept 5, around 2 pm. Julie has written twice, but it has been two days since I heard from her. She told me Ashton was not sleeping with her, so that makes me worried. He knew she was sick before the doctor's knew. I hope he is just upset that I am not there. I am upset that I am not there, so we agree.

I got up at 4 am to work on another project and now I am tired. Anyway, any of you with a phone, give Julie a call to see how she is and then leave a comment or drop me an email. Thanks.

On My Way to Oman

In London airport, on way to Oman. If this goes well, this could be
Julie's and my retirement. If not, then just and interesting and
profitable trip, hopefully. Writing this post from my phone.

Lots of languages and nationalities at this airport, Heathrow, and at
this gate. Cold in the airport.

Ashton knew I was leaving. When I came to bed, he moved from between
us to the otherside of Julie. He then asked to go out. He went to
his dog house and spent the night, Wednesday night. I left the door
ajar and he came back in about Sunrise and put his head on my
shoulder. He stuck close to me all day and drove with me to take
Julie to her chemo twice, lab mess up. Julie finally drove herself.
The benidriol makes her sleepy that they give with chemo, but I had to
leave for the Philly airport with olesia.

Boarding.

Leaving for Oman

To all,

 

Leaving for Oman today.  Daughter leaving for college tomorrow.  She is in a panic because all of her stuff won't fit in one car.  Her sister is coming down to help her, but they won't both fit with her stuff in the car. 

 

Julie's chemo got put off until this afternoon or tomorrow because the lab work on her blood was not back.  I'm afraid she will try to help Olesia too soon after her chemo session.  Don't trust her driving on the day of the chemo.

 

Everyone seems more stressed than Julie. 

 

 

I assume it will all work out.  Got to get ready for airport.

 

 

Robert

 

P.S. Janice came by, Julie needs to feed her cat while she is gone for a week.  Everyone counts on Julie.

In Wyoming .... Julie sounded tired

Julie sounded tired tonight. She took herself and our daughter, Olesia, to the doctor today and then moved all the bookshelfs in the basement. I asked her if her or Olesia could pick me up at the airport at 4:40pm tomorrow and she said she would see, which means that she is really tired and not able. I told her I would round up a ride or take a shuttle ... She asked me to take the train and I reminded her that she took me to Philly not Baltimore. She said she didn't remember. Of course, small things like this make me worry. Also, they could not do a chemo treatment this week because her red blood count was too low ... 8.4? vs 10 min vs 16? normal. Yea, and that made me worry too ...

I leave for Oman when I get back from Wyoming. Trying to make a few quick bucks before I need to stay home all the time and care for her.

As you can tell, I am tired and as usual, I write when I am worried.

from Wyoming.

Robert

Julie's Tougher Than Most

Sorry for the long absence from the blog. In general, when I don't write I am either very busy and/or everything is going great. In this case it is both.

Julie is doing exceptionally well with tolerating her chemo. You can see that Dr. Hosford is encouraged. Julie's breathing has improved to the point that they are saying we can give up the oxygen. We are holding on to it -- kind of like a lifeline. They are talking about more chemo treatments than originally. I think the general game plan is to give a person as much chemo as they can tolerate. The doctor is talking about six cycles. Each cycle is the full cocktail chemo, two lighter cocktails chemos and a week off. She has had 5 of 18 for you math majors.

The doctor wants to take a quick peek as she said to see how the tumors are doing between the current cycle of treatment and the next with a quick cat scan. We are wishing the tumors are doing poorly.

They also biosped the tumor in her "artifical breast." We assume it will be the same kind of cancer that they took out of her lymph gland. We don't the results or the options to deal with this 2.75 cm lump that everyone missed for five years of mamograms and ultrasounds.

We are all doing well. We enjoyed a visit from my son last week. He was here, then puff he was gone. We did alot around the house and then was gone. A rock garden in the back reminds me he was hear and brings a smile everytime I walk outside. It was his gift to us. Sweet.

I am going out of town next week. Julie is coughing up stairs, which distracts my line of thought. I will be gone Monday morning (4 am) until late Wednesday night. I hope you all take care of Julie. It is a test for my trip to Wyoming the next week and my trip to Oman the following month. Maybe one more trip to somewhere else ... I wasn't listening well when DR mentioned it. Anyway, let's concentrate on this week. I appreciate without measure all the help so far.

Eva and Suzanne are talking about coming by on Tuesday. Good on ya, as they say in Australia.

Note from Julie to Her Master Gardener Club

Subject: Who is Julie Allen?

Many of you only know me through the pictures on the internet as your Publicity Chair. I never made it to the introduction of 2007 class members as I usually had a conflict ing meeting . So just a little (ahem) to let you know who I am-the one now fighting cancer again.I am a dairy farm girl from Wisconsin-Allenville (yes, after my family), to be exact, near Oshkosh (yes, Oshkosh-B-Gosh) and graduated from the U of Wis-Oshkosh in Art and Biology (yes, I had very vivid notes and carried paintings of bugs or created biology related jewelry ). After dawdling about for a couple of years I took off to Tucson, AZ and lived there for 14 years where I met my husband, a metallurgical engineer (say that fast) who currently does failure analysis and corrosion testing as a private consultant and for Dresser Rand of Olean, NY. (he usually goes there 1 week a month).

After the birth of my 2nd girl, we moved to Corpus Christi, TX for 2 years (still have a house for sale there-interested?) where my husband had worked for a hazardous waste recycling plant. Then we moved to Greenville, SC.I loved Greenville as it is similar zone to here and was green like Wisconsin. It has a waterfall that goes through downtown. I was an avid Jazzerciser (yes, there is Jazzercise) and became class clown and registrar ( I knew the computer then)-6-7 days a week-1-2 hours a day! I also was a costume designer for the local Children's theater before we moved again.. My husband had moved to SC to work in a waste water treatment facility and after 5 years then worked for the Engineering firm-Fluor Daniel. This provided us with the=2 0experience of living 3+ months in Australia and 2 months in the Andes in Peru. My husband usually lived longer in these places than the family but he also lived in Spain, Denmark, Sweden, and Scotland for short stints which we never had the opportunity to visit. I have usually lived without him for months on end so having him working out of the house now is an entirely new experience. So after 13 years in SC, he l! iv! ed in DE for 6 months, and then decided Maryland would be for the place for my then 8th grader to finish school, our cats and me to live.That all was 5 years ago on a cold March day to Elkton, MD, and that summer I was diagnosed with breast cancer and spent the next year digging holes in our almost barren yard and going to doctors. All I knew were the doctors. My cancer was contained and a stage zero. I had a tram flap/mastectomy and continued with plastic surgeon visits for another year to straighten out scarring, etc. but I did manage to start some gardening. The hole digging resulted in a beautiful fish pond. I got more of my act together and joined an Art Doll group (a creative outlet) in fall of 2006 and then 2007 joined the MG's. I now have more friends than just some of the neighbors in our subdivision (I still have not met the wife next door). Now I face a brand new type of breast cancer-adenocarcenoma, HER 3+.

I had been feeling tired and coughing and having difficulty breathing since April. My oncologist had noticed swollen lymph nodes in late April and was concerned about my cough. CT scan showed swollen nodes on my chest and one of my vocal chord in the wrong position. My general surgeon (not really worried about BC recurring) sent me to an ENT to have my chords looked at. That was not of concern to the ENT because I could talk (I can always talk) and was still breathing( but labored)-had to be allergies. Then confusion set in as allergy testing started and Drs. called back and forth. A biopsy was scheduled of the nodes June 24th. They had an earlier opening but I told them I wanted to be able to breathe before I went to surgery. Little did I or anyone know it was because the cancer was creating the fluid and also pushing against my vocal chords. So after great concern during my biopsy on the 24th where I informed them I sti! ll! could not breathe, I called my family physician. She had me admitted to the ER within moments after getting a preliminary biopsy report and seeing my O2 levels keep decreasing upon just walking (by this time I could hardly stand or walk 5 feet). This all occurred at Union Hospital but everyone there was on the ball and I have had test after test. The cancer in not in my brain (although some would think so) and my heart is good.(always a kind heart) I have not heard the results of the bone scan. I was started chemo in the hospital (july 1-4) and wi ll have my 3rd treatment Wed. It is in my lungs, liver, adrenal glands, and nodes. The ultrasound did not really show anything in the breast. This aggressive cancer usually responds well to chemo and that is a strong hope of mine. (at least for 3 months, 1X/week) My hair is still on my head but soon it will be garden hats. I had a chem port put in Friday. I have "nas! ty! " veins so I give all the needle punchers a good time. I wi ll be on herceptin for whatever the rest of my life is (that sounds negative, sorry).

My daughters are handling this all pretty good and have actually tried to cook and clean. Skills I never really taught them. I know they are scared but hope they will talk to me. The oldest is getting her MS. in psychology at the U of Penn, the youngest is still searching for her career at U of MD-College Park. They are not gardeners but enjoy the "fruits of my labor". I have a "hippie" organic gardener stepson who will visit soon. As for my husband, well, this is a whole new "job" for him and there is no real manual. But with good cough medicine, he and the dog are finally getting a better night's sleep (well, me too). I have had neighbors and Master Gardener's helping me. I wish to thank them all, you,everyone for your thoughts, prayers and care. What lies ahead, who knows but having good friends keeps it all in perspective. I think most of us have=2 0had someone touch their lives by cancer. Nasty l! it! tle thing so lets all hope for a cure fast. I am not seeking sympathy just want you all to know a little bit about me. I am hoping to get back to some of my art work although the projects may be smaller than what I had wanted to do this summer.Weeding and watering the garden? My husband tries, well he tries. So anytime anyone wants to take out their frustrations,stop on by- despite no rain, the weeds keep growing. You may have to get to know Ashton, the Jack Russell but he is really a sweet guy-spoiled by me of course.So again-I hope this gets you a little insight and you can see my photo on the website to put name and face together. Thank you to everyone.

Julie Allen

Good Week

I was in Olean this week, but what I heard from Julie and Olesia is that they had plenty of help this week. Olesia kept sending me text messages ... OMG more food.

Olesia called to report to me that her mom was running around like she was on an adrenalin high, "or just loopy", she added as an after-thought. Bad news came back that the cancer was in the bones. Radiation may be considered at some point, but for now the plan is just chem. This week Julie has off from chemo. I got the schedule wrong. It is the hard chemo (3 drugs) in the first week, two easier chemo the next two weeks (2 drugs), and then a week off, then repeat the cycle. I will get the calender fixed up as soon as Julie gets me updated.

Julie is resting today, recovering from a busy week. Her brother Jeff is visiting from San Francisco tomorrow for a few hours. He is on a business trip to Washington, D.C. Hopefully he is not selling, and our government is not buying, something else that we can't afford.

This week is an easy week for Julie. They are going to do an ultrasound on the breast that was removed. The current theory is that the cancer reoccurred behind the breast that was removed. This is very rare apparently, so much so that when she had mammograms and UTS every six months for the last five years they never once checked underneath the rebuilt breast. Sounds like the doctors still have a lot to learn. I can understand how anger can arise from all the "could have been's" when you realize how a few good decisions could have changed this story. Julie says it has been sore under her arm with the rebuilt breast for a year. She just thought it was muscle soreness from all the surgery she had on that side of her body.

From a Bar in Olean, NY

It's an old rustic bar full of hardwoods, red bricks, brass fixtures, and mirrors. A bar from the past, in a city past its prime. The bartender grew up here, and owning this bar was his dream long ago, perhaps too many winters ago to remember.

I felt good when I set up the trip to NY, since Julie has been doing better since the chemo started. However, when she woke up this morning, she was hoarse and my heart sunk. My emotions are always on my shirt
sleeves, however that expression goes, but now I find that instead of having a solid core of strength, I am as fragile as a young child. I go up and down with every shift of the wind; there is no getting used to this new reality; my love, younger than me, has cancer. I said to her when we went to bed last night, that I would like to go to bed beside you ten years from now. She said, "I would settle for five." I said softly, I am not sure she heard. "I would, too."

Some Stuff Off My Chest ... Bad Doctors

Well, let me get this off my chest.

Julie's oncologist sent her to Dr. V, a surgeon, to get a biopsy of a lymph node on Julie's neck that was suspect.

Dr. V, sent her to a ear, eyes, and nose doctor, Dr. M. Why, because Dr. V thought something was wrong with Julie's vocal cords, and he was right. Well, Dr. M, looked at Julie across the table, pretending to be Dr. House, and told her nothing was wrong with her vocal cords. He is an idiot. He never put a scope down her throat. Guess what, Dr. M, there were nodules from the cancer on her vocal cords.

Dr. M would also not use the cat scans that were already done because they were on the computer and he doesn't use the computer. Of course not, he is an out-dated idiot. He sent her for more cat scans, which confirmed his deviated septum diagnosis. Idiot, zero problem solving skills.

Then Dr. M to make it worse, tried to talk her into some operations on her nose, deviated septum. Idiot. She has had the same septum her whole life, she only had breathing for the two months before she saw you, Dr. M. Then, to continue the stupidity, he started her on determining what she was allergic to. Cats and dogs. Guess what, we have lived with cats and dogs forever. Idiot. That was causing her breathing problems, nothing was wrong with her lungs. Idiot. All of this without an exam, just playing house.

If he had looked down her throat with a scope, I assume he would have been a good enough doctor to notice that she had growths on her vocal cords. That would have got her treatment a month earlier and with this cancer, that could have been a huge difference. Dr. V wasn't perfect either. He did not follow the oncologist's directions to take a biopsy of a lymph gland on her neck. She had to go back there a second time, after she went through the Dr. M circus.

Anyway, I am very angry with Dr. M and his incompetence and the six weeks of time he lost my wife while he was an idiot and the cancer was growing inside of her. I would go see him, but in my youth I punched people in the face that made me this angry. I am not sure I have outgrown that tendency.

Julie Wins Round Two

Julie had a pretty good week due to good drugs (chemo) and some good friends helping out ... and we should add, her upbeat attitude (I almost take that for granted).

Here is Cindy on one of her many visits. She is like a one woman wreaking crew, except she cleaning up, pulling weeds, doing dishes and organizing. She is my kind of person, she just jumps in and does it. Makes great bread and lazanja (sp), too, but I think I said that already. Thanks.

Shelby, our neighbor, is going to apply for her taxi license. There is a groove in the road between her house, our house and Elkton medical center.

Bunny and Trish both brought great salads. There is some more food but, I am drawing a blank at the moment. I will come back to this paragraph.

Janice came over, watered, got our mail, and did I mention, did the push mower all the places where the riding mower couldn't go. Guess who did the John Deere. I have got to admit the way she started buzzing around scared me some, well a lot. I went inside and had a beer. But, Bunny did a great job.

By the way, I told Bunny and Roberta that Ashton is 99% brilliant, 1% insane. I think Bunny is a believer. Ashton lead us, like Lassie used to do, to the back of our lot just for his amusement. Bunny earlier, sitting on the couch took out her camera and Ashton attacked it. He hates cameras, especially bright shiny silver one, they steal his soul, I presume.

Roberta pitched in pulling weeds, trimming flowers / bushes, and then finished up by cleaning the kitchen and vacuuming.

Julie had a chem-port put in her chest this week, had her second chemo, gave blood samples, got three super-shots to help her red-blood count, and helped pull some weeds after she got back from her operation (chem-port). Today she is tired and has spent most of the day in bed, but is not coughing much. She over did it on Friday as you might have guessed. But, on the other hand, she was really enjoying all the visits and seeing her friends. Many of them had never been to our house and she was proud to show her gardens and even took a few down to her craft room where she works her magic. Julie even started talking about going back to some of the Master Gardner Meetings. I hope she can, put I also hope she doesn't do too much too soon.

For those of you that want to know about Julie's drugs, see this link Julie's Cancer. I just started this page and it is not well organized yet, but I hope to add to it in my free time .. oh, I forgot, I don't have any. Anyway, I plan to learn more and write it down on this link. The side effects on all the drugs are pretty scary.

Good News Update

First, let me try to say thanks to everyone that has already helped before my senility settles in. First, thanks to Cindy for trying to help me organize, a helpless task. Thanks to Janice for watering the back yard garden.

Whow ... great chicken lasagna from Cindy along with some great Cinnamon flavored bread. Janet brought a great home made chicken pot pie. And Shelby was a personal taxi driver the last two days for all of the runs to the doctor, chemo, bone scan, etc. Peggy, Jody, and Christina dropped by to see Julie and talk. I drank wine with them ... someone has to do it. We have lots of cheap wine, two bottles are on the table now.

Julie did her second chemo today and it went much better. She has slept a lot but didn't get sick.

When she went back for her bone scan in Shelby's taxi, I insisted on replacing her portable oxygen bottle since it only had 25% left. It annoyed Julie since she was sure it was enough. When she took off the bottle before the bone scan, she realized that she had not turned it on. She hadn't noticed, she said. Well, I think she did that just to show me my mothering wasn't required, or just from the pure pleasure of me being wrong. But, that could not have happened even a week ago, when Julie was struggling to breath.

I will give some more details on the cancer treatment details soon. But, there are three drugs in Julie's cocktail. On day one, Julie got all three drugs. On day eight (today), Julie got only two of the drugs. On day 15, she will get the two cocktail chemo again. Then it starts all over again. The next three drug cocktail will be on the 23rd. My thoughts are that this will be the harder one for Julie.

One quick comment on the doctor, Doctor Hasford. She strikes me as very capable. More on that later, but I believe Julie is in good hands.

Here is a link to put your contact information in ... and what you are willing to help with: Julie's Helpers. On the second page of this same spreadsheet is a signup sheet for stuff that needs to be done. I am putting yellow boxes for scheduled tasks where someone needs to sign up. Cindy sent out an email address and password to get on this account to most of you. Ask me or Cindy for the information if you want access.... There are no big secrets on the file and Julie does not use this email account. If we have problems, then we will worry about it. Cindy, any help you can provide coordinating this would be great.

The spreadsheet has a sign up page for tasks. The calendar has all the important doctor stuff for Julie. It did have everything, but it got way to cluttered and I was afraid that the important stuff would get lost in the mess. Now, I think it will work best if everyone signs onto Julie's email account, goes to documents to find "Julie's Helpers" to sign up for tasks. However, I realize that everyone is not addicted to computers/software like I am. So, you can also just make an entry on the calendar and we (Cindy and I) will also put it on the spreadsheet. This is a work in progress. Also, you can just call me (cell phone number on email, or leave message on house phone) or Cindy if she is up to it. I suggest we keep the phone numbers off the blog, just too public. A series hacker can probably get the info off the spreadsheet, but let's hope there is not enough incentive for anyone to bother ...

Yes, Julie made the doll above. It is for sale in a shop in the northeast. I forgot the name, or I didn't listen. Either case, there is an empty spot in that part of my brain. Julie is a very talented artist for any of you that didn't know ... and, I am not prejudice.

Torando

Tornado

Tornado clouds gathering
In the west
Dark and cold
Mid summer's heat
End of the good times
Not the dreams we had
First drops of rain
Edge of the storm
Her beside me
In our bed
Her lungs cracklin
Slight moans in the night
Thunder and lightening
In the coming storm
Good times ending at the
Edge of our memories.

Roe, july 8, 2008

Makes it Downstairs

so, dad, does this mean you might no be there much when i am there? is olesia
>staying at the house now?
>
>your blog is a good start. i would like to see some more pictures of julie
>happy, living, not in a hospital bed only, and some nice pictures of her flowers
>would go well in there too. maybe ashton pouting at the doghouse?
>
>your email says the beginning of august, and i was thinking the end of july..
>not much difference, but the sooner i know the sooner i can get a ticket. and i
>imagine that it will be a bit cheaper the sooner i can get it. maybe not.. i
>haven't bought a plane ticket in a while/
>
>mikE

dad, well, whatever you need to do.. i was wondering if there was an ideal scenario in mind for you in regards to my timing and stay? is Julie checking her email? how was today for you? mikE


Mike,

Well. I played tennis and played okay. I was tired from not sleeping well, but that's okay. I have all sorts of feelings, probably dread, being at the top. I don't know how well Julie is going to hold up to the chemo, she was in a lot of pain the last time -- I don't think she was able to handle the entire dose. I left because I thought they were done, but they were only the test doses to make sure that she didn't have an allergic reaction. So figuring out anything else at the moment, like ideal timing for your visit, is more than I can process at the moment.

I need to help Julie get started on using Olesia's laptop in the living room when she comes down ... so she can get her email. I will try to make that happen tomorrow. Julie has been struggling with telling her father, the only family member that doesn't know. He is in his mid 80's and is already feeling lonesome since his wife has Pick's disease, which is similar to Alzheimer's. I can't imagine finding out that his daughter is really ill is going to go well.

I sometimes think I am like an empath, if that is a word. Or perhaps, just a whimp. I hate seeing Julie hurt, or even have coughing episodes. I think the coughing is doing better, but I am afraid it is from the oxygen, not the chemo. Anyway, I am trying to learn to move into the moment and not think ahead.

Dad

P.S. Joe and Lynn came over Friday night and brought supper. I fired up the grill and Joe cooked the chicken he brought. Drank too much wine and had a headache. Ashton wanted Julie to go outside at 3:30 am. Not sure what that was about. He wants her to get out a garden, not sure why he chose 3:30 am. I went out with him, but he just looked at me ... like, why are you going outside at :3:30 am in the morning.

Feeling Sad on the Second Day

When I was 19
my dad's heart went bad
he dug up and sold all his flowers
that filled his back yard and heart
knowing we would neglect them
better to send them to a new home
than watch them die in the arid soil of El Paso..

Roses were his favorite
big red ones
giant thorny bushes
that lived like creatures in our back yard.

After all the flowers
were off to good homes
he wrote a note,
left it next to his bed
asking for red roses on his grave
He then laid down and died.

Yesterday, my wife
Bed ridden from cancer
Sent me home
To water her flowers.

I don't know her favorite
she told me
I'm sure.
I feel guilty for not knowing
for not being with her
with all my heart and soul
for all these years.

If I had of known
the last time we made love
that it could be the last
I would have made love
with some of her flowers
strewn across the bed
with my heart

Our dog Ashton
a Jack Russel with a soul
would not sleep inside last night
slept in his dog house
head on paws
sadness in his eyes.

He didn't come for breakfast.
Perhaps later I will bribe him
with a car ride.
He might think
we are going to see Julie
and come along for the ride.

I would like to take Ashton
to El Paso
and show him the arid soil
and place roses
on an old grave
with him beside me
and mom beside dad
but that would be a long ride
and it is not where
he wants to go.

So today
I will water her flowers
Before I go visit her
Sick and in pain
from her first chemo
and leave Ashton
head on his paws
In his plastic dog house
under the tree
next to her garden.

Roe
070308

Chapter 1

The news hit like a bombshell although we both had thought it, but neither had said, as if not saying it would prevent it from happening. Aggressive breast cancer. Mastisized cancer.

Julie handled it all with such grace and kindness to all those around us. She has always been the strong one and this was no exception. In the doctor's office when the words were first uttered, it was her that comforted me. She was brave for our girls and smiled and said kind words to every one in the hospital that came to help (and ask a dozen questions) even as she struggled to breath and talk at times.

I would like to say this Blog is for my wife, just diagnosed with cancer. But, it is for me. A selfish act to help me cope. I cope by writing, I always have. This is to help me make it from today to tomorrow. One day to the next with an elephant standing on my chest.

Mavy, or Maverick for long, welcomed Julie home by hanging out on her side of the bed, meowing and wanting her to get up and feed him. No sensitivity. He doesn't like the cat food when I give it to him. It is not the order of things, the universe is out of balance for him. Ashton does not trust the oxygen generator and threatened it with violence when it beeped at start up. He hasn't heard the nepulizer yet or seen Julie when she is using it. I suspect he is going to not like a machine making noise and making smoke (steam) come out of Julie's mouth.

Ok, it takes a little humor to make it through the life when things are "going well" -- actually, we seldom recognize we are in one of those times. It is going to take a lot of humor going forward. I hope I can keep Julie and myself laughing at least part of the time.