Monday, November 29, 2010

A few better days

The MRI found a  crack in Stephanie's Tibia.  This crack is causing pain.   Because of the cancer surrounding it.  It will not heal.  Add to that the Radiation treatments.

What we know........... life is to be enjoyed.......everyday.  

We have all heard the stories.  People explaining how they see life differently once something dramatic happens to them.  Well I am telling the story now.  

My wrist carries a yellow plastic bracelet.  It states my support for Cancer Research.   Just a few months ago I didn't  have much interest in Cancer.

Statistics showed prostate cancer would visit my life in later years.  But that would be thirty years from now.

Today Stephanie has cancer.  It still seems so not real.  Needs of life still exist.  Jensen still needs his mom.  The girls still need rides to friends homes, and the barn to ride horses.  Malcolm and Laura are giving us our second grandbaby.  Wyatt is loving BYU.

Stephanie still has cancer.   We are enjoying life.  

P.S.  Thanks again to all who have emailed and posted such wonderful messages.  It brings both Stephanie and I so much heartfelt piece.  So many have also texted such thoughtful concern.  Please let me know of anything I can do for you.  Sincerely

Wednesday, November 10, 2010

'It Really Hurts'

'It Really hurts and I don't know what to do'

I am in a meeting and Stephanie's call tells me I need to get home.  Once there its clear I need to get her to the ER for another IV to control the pain.   Radiation treatments start in the morning.   We can't help but feel anxious.

Wednesday  a very painful challenging day.  


We arrive at Huntsman for our 930am radiation appointment.  Because of the severe pain the radiation is canceled and stephanie is admitted.   


Its now 8:35pm as I find a moment to write.  The breakthrough pain for Stephanie is still serious.


 I can't help but feel, we have been cheated.  


Stephanie is here 40 years to soon.


I don't know what to do.


So many things to write........I can't do it today.    



Friday, November 5, 2010

JENSEN WAS RIGHT

This post is the 6th of 6 


Recap

'Jensen the Doctor told  us why mommy has been hurting so bad..............  She has cancer'

"OH  I thought it was going to be something REALLY bad!" he said

Stephanie and I have spent the day at the Huntsman Cancer institute.   This was the day to get results from the full body PET scan.

What they found:

Hot lymph nodes under each arm,  One in the neck (right side) and two different areas on both sides of the groin.

And of course, where it all started?  In the knee and Tibia.

What do we do?

10am

The first communication indicated the need for chemotherapy.  Stephanie would loose her hair.  Once the doctors charted the 'finds'  we could the have then "statistics"

The better news

11:30am

It was determined that the hot spots would be closely watched.  It was also suggested that in 90 days a less invasive CT scan would be run to follow any growth of the Lymph Nodes found by the PET scan.   Any growth would induce more aggressive treatment.  No chemo for now :)

Radiation treatment

Stephanie's knee and Tibia will receive direct radiation over two weeks.

The fact that Stephanie has cancer is so frustrating for both of us. The challenge of physical pain side effects, scare us.  The reality of a treatment is wonderful.

We will take it!

Stephanie will have this lymphoma cancer for the rest of her life.  Doctors visits will become something we get use to.   25 days ago ours lives had no Cancer.

Today we accept our future.

The blog.  Just under 1500 people have visited this simple  blog in 15 days.  Friends from France, England, Mexico, Australia,  Indonesia, and the US.  I have learned that sincere heartfelt concern carried us through the shock of our situation.  While we settle into our new reality we can't help but feel so fortunate to have positive thoughts  and prayers from so many.

We love you.

I will always remember the optimism..................of a 10 year old boy.





Tuesday, November 2, 2010

'Lets play a game'

This post is the 5th of  6


'Lets play a game'

Stephanie says

We are both home alone.  Its halloween.  Both Bria and Anna along with Jensen are with friends.  We are sitting together in a comfortable chair for one.  

'Ok what are we playing'    I ask

Stephanie is holding two pieces of paper and a pencil


'We will both write on these piece's of paper.  We will guess where the cancer is in my body.  It can't include where they have already found it.   We won't show each other our answers until after the PET scan'

She wants to put each paper in a envolope and seal it.  

'Once we find out we will open the envelopes and see who win's'    She says

In my mind 'I am stunned'  not revealing  my emotions (I feel like crying and I don't want her to know)

Working hard to control my voice I tell her I can't play.  

We sit in the chair made for one,  and hold each other.  All the while the doorbell keeps ringing

'trick or treat'

Stephanie wants to hand out the candy.  I stay in the chair.  As I watch her,  I tell myself how lucky I am.  She is so beautiful.  With a big fake spider in her hair she is laughing and giggling as the kids come to the door.




Friday, October 29, 2010

'Are You Nervous'

This is the 4th of 6 Posts

'Are you nervous'

The PA (physicians assistant) asked in a nice way to Stephanie once we are in the examination room.

'Yes I am'  Stephanie says.

He tells us the doctor will be here shortly

Today we are at the Hunstman Cancer Institute.   It is the official 'You have cancer' day.  The first blood tests and Pathology is back. Stephanie is feeling pain in her knee and her head.   Stephanie and I talk about the blog.  I ask her if it is ok.  I tell her it feels odd because its so much of 'Tom' and my feelings.  She reassures me that its just the opposite.

She 'loves it' she says.  It shows her how much I love her.

I tell her I have not been very good if the blog tells her that.  She laughs and says 'I love you'

I take for granted that she knows I love her.  I realize again that girls are such a mystery.  I say girls because I have three of them.  Stephanie, Bria, Anna.

The few paragraphs above this line are written while Stephanie and I are waiting for the Doctor.  I couldn't write anymore at the institute.  We are both trying to define what happened.  The words below are written 15 hours later

Another PA just came in.


After about an hour of questions and answers, and pages of paperwork.


'We already know its stage 4'


I say................. wait.. say that again...............what did you just say?   We are here for more tests right.....?
In my mind I thought  she is just talking random things about cancer.  So much of what she would say could roll into several sentences.    


'Its stage 4'  


We were devastated.  Stephanie is lightly crying.  I feel my whole body shutter.  Stephanie puts her hand on my knee.  She keeps it there for so long.  Its like she was protecting me?  I will never forget.

So much of what happened I can't put into words.  We only know this is a battle.

By the end of the day Stephanie is put through a series of tests.  One of them she is laid face down.  Without general anesthesia, like she had for the the other biopsies, they remove bone marrow from her hip.  It was professionally done.   But so invasive........she was awake and they go right for the bone marrow?

We learn that 40 different types of Lymphoma exist.  Its explained that Stephanie's type is Treatable but cannot be cured.  What does that mean?  It becomes clear that over the next several days we need to pray that cancer is not found in more places.  This 'stage collection' will include a PET scan procedure from head to toe.  Once all this data is in place we will get definitive statistics related to this cancer

Even with the stress and tears of the day.  Something wonderful happened.  Its hard to describe now because I am so sad at this new reality.   But at different times during this horrible day.  Stephanie and I would find ourselves laughing..............no tears just laughing.

For the few family and friends who have been directed to this blog.  Both Stephanie and I thank you for your kind and heartfelt words of support.




Tuesday, October 26, 2010

The 'news'

This post is 3 of 6.  So far

Monday morning we meet with Doctor Randal.  He is a very thorough individual at the Hunstman Center.


You can't help but look around in the lobby and hallways and wonder.

 "How bad does this person have it"

Some people are sitting and waiting.  While others are laying across several chairs.  They have their pillows and blankets.  It breaks your heart.  All ages are present.  And then you realize......we could be in this system......it hits me like a train!

Meeting with the doctor it is decided that another Biopsy is needed.  This time in the Tibia.  This bone  is right bellow the knee.  We learn after this surgery why he was anxious for one more surgical biopsy.

Surgery is set for Wednesday at 7:00am.

'The sample is quite interesting' The assistant Doctor tells me in the waiting room after surgery.

'The Biopsy hole in the Tibia has created severe pain. They are working to get it under control'

 He also states 'Dr. Randal is already on the scope studying the sample'

The biopsy would take two weeks.  Evidently they have microscopes that allow some preview on the spot.

Two hours later I am invited to Stephanie's room.  The pain is under control with an epiduaral type procedure on her leg.  I have decided not say anything about the post surgery Doctor visit in the waiting room to Stephanie. (She won't know until she reads this post) I was still trying to define for myself what he said? Soon the doctor arrives.  Both Stephanie and I are hoping for the best.  I mean the last biopsy was not malignant.  So why would this one?

The Doctor was pure sincerity when he came in.  That in it self, caused me to feel so vulnerable.  I just felt like if he looked at me to long I would cry.  Anyone that knows me understand crying is very rare for me.  He was about to say directly to Stephanie what I would give anything not to hear. This good man then said

'The Biopsy will take two weeks......But I know my business.......I know what I see.......we found cancer........all the blue cells'

We ask the doctor what happened on the first Biopsy.    He says because of the lesions on her knee he sent back the tests three times.  He said it did not make sense.  He said we had to report no Malignancy.  But he knew they needed to go in again.

Well he was right

I was so proud of Stephanie.  While the doctor explained everything she listened and knodded her head.  She would say

'OK I understand'

Durring those few moments it seemed like a complete dream for me.  I know it is Stephanie that has the cancer. What is going on with me? I felt so sad.  The doctor and nurse would look at me during 'the talk' and it felt like it was a "are you ok?" look.

Stephanie has been sick from 2000 until December of 2008.

 I just got her back.  Our kids just got her back.  I hear her laughing with the kids.  She goes to parent teacher conference's.  Cooks meals.  Plans events.  and everything else.  We have so much fun.  I love her.  This is so bad for her. Why would this happen?  Give her to us for awhile and then go back to all the pain?  How does that happen?

I know that paragraph is selfish of me.  This is a blog.  I will always be honest.    Stephanie loves me and I love her.   She has such a hard time with pain.  Give me several lifetimes in Samalia in exchange for her pain........but give her back to my family.

Sunday, October 24, 2010

March 2010, Early Indications

This post is 2 of 6 so far

Puerto Vallarta Mexico  March 2010

'My knee is really hurting me'  Stephanie tells me

She loves to hit the beach first thing in the morning and go on a brisk walk.  The sandy beach is an angled-off camber walk.  Going in one direction you kind of hobble because of the off-camber slopping  of the sand cut from the lapping waves.  When you turn around and head for home and get just the opposite effect.

Her comment 'my knee is hurting' is just a passing 'O' from me.  A few days later she can't move her leg and she is crying.   She takes an Ibuprofen. Nothing.

We go see the doctor.  He is a wonderful man. While his office is only three short blocks away.  We drive.  Stephanie can't walk to the car.  I carry her.  It is clear that she has severe pain.

In the small town of Bucerias the doctor has a great reputation with the Expats and locals alike.  It's quite an experience to visit this good doctor.  As you enter the nondescript multi-tenant building.  Located on a very unique cobblestone street.  You see his lobby.  His office door is closed.  There's a camera that alerts him you've arrived.  Just some patience and the door opens.

It is at this point that you fall in love with this man.  His concern and time is all yours.  No rush.  Lots of questions.  Communication back and forth until both parties understand the next step.  He prescribes a modest dose of Pain medication. I pay him 200 pesos (about $16 US)

By the next day it is clear that Stephanie needs to go to the Emergency Room.

Several tests are done.  Including a painful fluid removal from her knee.  Tests show no bacteria.  A long list of possibilities are eliminated.  The next day they run an MRI.  Aside from some marks on her bone tissue nothing is found.

Ok.  I know what you are thinking.  This is Mexico right? Yes it is.  Well rest assured this facility in Puerto Vallarta has some of the best physicians in the country.  


She is sent home and her knee starts to feel better.   We think 'wow that was odd'.  We mark it off as a bad experience and life goes on.

Fast forward October 8th 2010.

 I am in Asia for the first week of a 21 day business trip.  I learn from Bria (my amazing 16 year old girl) that she took mom to the ER because her knee was hurting her so bad.

Stephanie tells me to not worry she will be fine.  I learn 12 hours latter that she has been back to the ER twice more. Bria tells me the doctor used the phrase 'We need to eliminate cancer'.  Based on some lesions he saw on the X-ray. By this time Stephanie is having pain in here hip and ankle.

From Taiwan I grab a taxi and head to the Airport.  While sitting in the airplane getting ready to take off I receive a very personal premonition that makes me cry. I get home just after Stephanie had her first surgical Biopsy.  We are told that we can expect results by Monday.

Monday comes and goes. Tuesday too.

We learn that Wednesday will be the day for the report.  Expect a call.  Thursday we are sure it will come.  All the while we are thinking the worst.

Friday the call comes "Good news. There is no malignancy. The doctor would like to see you Monday at 10am' We celebrate.  The best we can.  Stephanie is still hurting. We spend Sunday at Bonnie's house (my wonderful mother in law)  Everyone hugs Stephanie and is so relieved and grateful for the good news.

Monday morning we go to Huntsman Cancer institute for the the 10am appointment