the last month.....

I know I have not updated for a while.  I had three treatments, one per week, then due to low blood counts had to take a break.  Gemzar does a number on your blood counts.  

On Dec 17, last Saturday, Dustin married Jessica.  The new Mr and Mrs Orner are in Mexico on their honeymoon.  We are now officially "empty nesters".  In exchange our family has grown and no one had to get pregnant and give birth!

We all had a great time. The Orner and Glaser families are so blessed!

My break ended yesterday with the 4th treatment.  We start again and I have to tell you I do not look forward to the next few weeks.  I will have follow up CT when the 6th treatment is done.  Not sure when that will be due to the blood count issue.  Fatigue is a big deal with Gemzar too along with feeling like I have the flu without actually having it.  My oncologist is taking good care of me doing all he can to make me feel as good as possible.  He can only do so much.  

I know it seems weird or something to post about Dustin and Jess' wedding then follow with cancer stuff.  But, that is what life is.  Both good and bad.  It comes to us all.  It is no respecter of persons.  God tells us that.  

So life goes on.  We celebrate life and at the same time fight the bad.  I still want my miracle. I was reminded tonight this cancer, as all our issues, problems, baggage etc belong to Him.  So does the good.  He promises to take care of us.  The tricky part is to let God do what he does!

Here we go, Chemo Round 2 #1,

The first treatment was Tuesday Nov 15.  There will be 6 treatments in total given once a week skipping a weak when blood counts get too low.  And then there's the wonderful fatigue.  Oh yes, the yucky feeling that hits a couple of days after the infusion.

This round is due to that stubborn lymph node near my aorta the has now decided to grow accompanied by rising CA 125.  It sucks.

This time I decided to not try to be brave enduring the yuk feeling and muscle pain and take pain meds on the bad days.  There are no medals for suffering through chemo treatments.

And that is what I am doing today.  If you called and I did not answer, I don't feel like taking.  Besides, I am drunk today! 

I have made special requests not to be given advice, preached at, and not to hear about your relatives with cancer etc.  Thanks to those who honored my request. 

I want to live as normal as possible as long as I can so I tried to go to the first Awaited rehearsal this week without success.  I did however receive support and encouragement in the form of we love you's, come hang out whenever you can, and an "on the spot" prayer for my peace and strength.  Thank you Paula! 

I have a lot of movies to catch up on.  Maybe next week. 

Today I had my every three month CT scan. 

Here are the findings: 

The lung tumors are responding well, some even smaller than before, some the same, some even gone. 

The lymph node near my aorta is not fairing so well. It has started to grow. 

The tumor markers are also elevated ( blood work ). 

Therefore, i will begin chemo next week. A different drug than last time. The main side effect is fatigue, like I don't know about that! I will keep my hair this time. Apparently the other side effects seen with chemo agents are not likely with this drug. I will have one treatment a week for 6 weeks then scan again. ( am I glowing yet? ) 

The good part is that they are trying to "nip it, nip it in the bud" as barney fife would say. 

The discouraging part is that they have to do it at all. love you, family, can I call you that?

Feelings yet to be figured out!

it is now october....

I saw the movie 50/50 twice. It's a movie about a young man,27, diagnosed with a rare, invasive spinal tumor. the name was very long and even though I am a nurse it's too much for me! Anyway, 50/50 is a "dark" comedy, not one of those sugary, sappy cancer movies. I really identified with the emotions and reactions of Adam. The initial diagnosis, disbelief, shaving the head when the hair started to fall out. Not wanting to, not wanting to believe it but the hair was coming out in handfuls. Didn't want to walk around with bald spots. The screaming all by myself really loud. Wishing everyone would stop telling me I would be ok. No one knows that. Maybe God will heal me. Can He? Absolutely! Will He? I don't know. Am I doing well right now? Yes for sure. But I have to be honest with myself. To do otherwise will serve no useful purpose. Even though I get really tired I am going to watch my grandsons Nick and Blake play their football games, watch Haley cheer her heart out every time I can. Blake has decided to take up wrestling. So, I'll be doing that too. I am gonna be with my children as much as they can stand me. I'm going to dance at Dustin's wedding, enjoy our new daughter Jess. The only place I wanted to see is Hawaii. This has been made possible through a generous gift from some awesome people. Thanks so much. You know who you are. We will have personal tour guides also known as friends that "snowbird" in Honolulu. Now that's the life. During chemo I did not miss any Fresh Winds engagements and don't intend to miss any in the future. You might need to prop me up, but I will be there. Sounds like Michael Jackson, oh my. BTW, If you are easily offended, don't go see the movie.............love to all.

keeping you updated more often .....

saw a friend tonight that has been checking my blog for updates.  told her I did not have anything to say. I did kind of leave you hanging by not giving you the "final" results of my ct scan.

final result was almost the same.  it read "most" of the lung tumors were still smaller than the previous scan in May.  the peri-aortic lympn node was unchanged.  Stubborn little sucker, to quote Julia Roberts in Pretty Woman when she flipped that oyster, or whatever it was, across the restaurant.  now that I think about it she said slippery little sucker.  still funny.

but now I am having severe right arm pain.  had venous dopplar study for clots, none.  had neck and right shoulder mri, found some issues but the torn long tendon on the biceps muscle seems to be the culprit.  also had xrays on right are, no tumors on right arm and shoulder, that's great.  so, steroid injection right anterior shoulder joint.  do some exercises.  now lets see what happens.

the medical community does not expect the tumors to be "gone".  their goal is to reduce them and no new sites.  now I can live with that.  but I will not be satisfied until they're gone.  that's my goal.

now about those dark places.  you really did not think they would go away did you?  they are never far away.  I do know some things are almost guaranteed to lift me above them or at least to the top half of them.

my traveling worship choir, Fresh Winds.  whether practicing, performing, or just hanging out that does it.  and crossroads.  especially last wednesdays.  if you have never been, you don't know what you are missing.  there is no adequate way to describe it.  it's one of those things you just have to be there......

tonite brian shared with us that God wants us to take adventures.  now this adventure I'm on would never have been my choice but I know that God is and will do things in me and my family that could never have happened on another path.  as you can imagine we have not seen all these as yet.  guess He'll just have to keep me around for a while huh?  no harm in asking for sure.

dark places....

yes, that's where I am.  one of those dark places I can go so easily.  this time it not only affects me.  


I have been guilty of pushing folks away.  many folks have told me how good my new hair looks.  I start to believe them then I see myself in a mirror or a picture.  my friends try to encourage me but I push them away.  I could wear my wig.  I could use a "do rag".  I am tired of those.  it really doesn't help for people to try to encourage me.   I get overwhelmed with folks making over me.  I know that's not normal, that I should not feel that way.  but I am not normal, especially now.  this is uncharted territory for me.  only thing I can figure is that I am self conscious about it and embarrassed.  when I look at myself I see a bald headed old lady.  I can't help it.


my intent is not to hurt anyone's feelings but I am sure that is what has happened.  I am sorry. please forgive me if you can.  

time...............issues.............

time, it's unpredictable.  precious.  fleeting.  scary.  passes too quickly.  allows us to enjoy.  love. experience both happiness and pain.  to live.  love.  laugh.

i am very aware that at any time one of my many doctors could tell me that the tumors are active.  i am only as confident as my last scan or test.

now i want to spend as much time as possible with the ones that are close to me, the ones that i love.  everyone has their own lives and lives are so full.  there just isn't enough time to go around.  i do hope we don't run out before doing all the things that we so want to do.

then there are "issues".   we all have them. and you know what?  they are still there when you get sick or some catastrophe forces it's way in to your life.  don't know what to do about it.  i guess some of the issues are not worth carrying around.  others don't seem so important after all.  but others you just can't seem to shake off.  oh if there could be a magic wand to make all things different.  but we all know better don't we........

i wish we had prepared better for retirement.  i would be so tempted to retire now and spend lots of time with the 8 people i love the most....david, michelle, bill, haley, nick, blake, dustin and jess.

but if i had that much time on my hands i would only get myself in to trouble.  i would sit at home and go to that "dark place" too deep and too often.  besides, i need the distraction. and the money.  gotta have money to be off work cause i like to shop.  don't have time to shop when working.....

so until i can retire i will just have to be satisfied with how much free time we have to be together.  i hope we can make the most of it.

i love you all!

you'll be ok!

haven't updated for a while.  yeah, I'm still pink and breathing.

I feel good, just get tired.  get out of breath when do anything physical.  guess I'll have to not do anything physical.  I am working more, getting closer to 40 hours.  I am in remission.

went to last wednesday.  awesome time of worship.  music for the entire time.  music speaks to my soul. sometimes, most of the time, it is the only thing that lifts me up.

I put on a good face when I am with people.  but I can go to the dark place so easy when I am by myself.  sometimes I want to be by myself.  it's probably not good for me.

His love endures forever.  I gotta remember that.  I know He loves me.  I've heard it all my life.  Sometimes I have to really remember it.

I have folks come up and tell me that they had cancer too.  or a family member had cancer.  That they have been cancer free for a bunch of years.  You will be ok they say.  most of them are referring to primary sites, they found it, took it out and it has not come back.  I had my primary site in june 2009.  I am dealing with metastasis.  that changes the whole game.  outcomes change markedly when there is metastasis.  stage IV is never good news.  there I go with "nurse talk" again.  unless God intervenes I know what is in store for me.  like my sister-in-law says, I know too much.

cancer free is a misnomer.  no one can say with certainty that they are cancer free.  even those who have never been diagnosed with cancer.  you just do not know.  it hides and pounces on you and you don't even feel it.  the best anyone can say is there is no evidence of disease.  that's it.  ned.  I can't even say that.

the folks that tell me I'll be ok mean well.  they want to encourage me.  they have the best intentions.  I get that.  maybe they want to make themselves feel better.  it's hard to watch someone go through this and not be able to help them.

maybe the definition of "you'll be ok" needs to be reconciled in me.  I think when someone tells me I'll be ok they mean the cancer will be cured, or that I will live a long time.  don't get me wrong.  I would like nothing better.

when I am told I'll be ok I need to see that the meaning is really what ever God decides for me is ok.  If  He sees fit to extend my life for many years I'll be ok.  if He does not, then I'll be ok too.  What ever God decides, I'll be ok.

mean while, life goes on.  it was great to see my fresh wind friends at graeter's last nite.  ice cream is my greatest down fall.  well, that and chocolate.  we are going on vaca with the kids to destin.  david and I will celebrate our 40th anniversary jul 3.  dustin and jess are getting married dec 17th.  I am in remission.  gonna be a great rest of the year.................

how do you make a hormone?

You forget to pay her!!  har, har......

Sorry but wanted to laugh a bit......

Went to the doctor on Monday.  I know that's a surprise, another doctor visit.  He was almost ecstatic.  Very pleased to say the least.  All tumors smaller, remember I was only given a 60% chance of remission.  Remission is defined as cancer not active, smaller and no new sites.  He did not expect it to go away.  I was and still am hoping for a different kind of miracle.  The one that the cancer is ALL GONE!  It could happen you know!

But for now I started the next therapy.  Hormone therapy, hence the lead off joke!  It is a form of progesterone.  It is to make the remission last longer.  It is also used as primary therapy and makes tumors smaller. 

The pharmacist told me it is also used to treat anorexia.  Now, that is all I need.  A life saving drug that could make me eat more.  The dose is 5 pills a day.  If being treated for anorexia you take all 5 at once.  So I will divide the dose!  Hopefully it will kill the cancer and not make me eat myself silly!

Took the boys to the movie while Michelle and Haley were at the cheer gym nearby.  They split up for the ride back to the gym and Blake rode with me.  Upon arriving back at the gym I took off my wig and replaced it with a bandana.  I said to him "Look at grandma's bald head".  "Is it all over" he asked.  "Yes" I replied and I showed him.  "That's sad" Blake said.  What a tender 7 year old.  Then I told him "no, it's not.  The medicine is making the cancer smaller.  It will grow back".  I hope he is ok and does not worry.  It is hard to know what's in a kid's mind, you know?  I always believed you should be honest with kids.  Come to think of it, mine turned out pretty good. 

What we've been waiting for

Chemo done.  Scan done, labwork drawn.  Verdict in.


Dr Crane called today.  Cancer continues to shrink.  Tumors smaller than last scan in March.  I said everyone wants me to celebrate, but I don't want to.  He said yeah I know, but we all need to celebrate more than we do.  No one knows what will happen.  I will be in remission until the tumors start to grow and/or show up somewhere else.  Dr Crane will open a bottle of wine to me tonight!  


We will start hormone therapy at my next visit in a couple of weeks.  He is researching another treatment too.  We will do labwork in 6-8 wks and scan again in 3 months.  We are still on the "attack" mode!


Spoke with my friend Leslie today.  She is a survivor too.  We've known each other since we lived in Nashville.  One of those friends that you can pick up right where you left off.  Not many of those kind of friends around.  She gets it.  She was honest enough to tell me the fatigue will last a while.  Hers lasted 9 months.  Wow definitely not what I wanted to hear.  But at least I know.  


So since I wasn't sick until I had chemo and the tumors are all smaller, it stands to reason when I finally recover from the chemo I won't be sick.  Really looking forward to that! 


If anything speaks to me it is music.  On American Idol tonight Lauren sang Martina McBride's "Do it Anyway".


Some of the lyrics go like this: 


God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, yeah, 

You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway

So, even tho' I don't feel so well right now, even tho' I'm scared this is not over, even tho' I feel alone sometimes, I will celebrate.  Do it anyway!

next steps

last treatment this round
notice the bags that hold
the "poison" hanging
above my head!

Before this treatment I had to have a Neupogen injection last Friday.  My white blood cells had fallen and this injection helps my bone marrow make new ones so I can have the "poison" take them down yet again.  Cannot afford to get an infection as my body will have a difficult time fighting infection without adequate numbers of WBC's!

Saw the doc before the treatment as usual.  The shot worked, treatment as usual.  We will scan again next week and go from there. Also drew tumor marker CA125 today.  Both tests will either confirm or deny remission.  

My cancer is the kind that responds well to hormone therapy.  My hormones bit the dust a while ago!!!  Not the right hormones anyway.  Still have to take the pills.  We will start them probably in four weeks.  We don't want the hormone therapy to interfere with the poison doing the rest of it's job.  We are going to be "aggressive" with this cancer.  The hormones will prolong remission, we hope!

Even though Dr Crane does believe in prayer and miracles.  He has to give me the facts, medically speaking.  I appreciate that he told me upfront he will always be honest with me.  But he adds, he has been surprised by some of his patients that defied the odds.

Overall, statistically speaking, the odds are not in my favor.  Uterine cancer is the most common of gynecological cancers and when caught early, removed with no evidence of spreading, has a very good mortality rate.  For you non-medical types, they live longer.  That was the prognosis given to me in June 2009.  That changed January 2011.  When uterine cancer metastasizes, spreads, the mortality rate goes remarkably down.  Survival rate of 12 months or less.  I did warn you not to read my blog if you cannot handle it.   

I have to know the truth medically speaking.  I cannot hide from it.  I do not discount miracles.  So no sermons needed, at least today.  I am remarkably calm today.  But I don't feel bad yet.  That will come Wednesday....................

This is what I am fighting for, in no particular order:

 

The rest of you know who you are!!!

I love you!

PS:David told Dr Crane about his healing when he was hit by a car at 15yrs old.  He was in a body cast for several months.  One night his mom prayed to God for his healing.  You see he was told he would not walk again.  She cried out to God, " You COULD if you only WOULD".

You all know what happened.................Dr Crane said they should have turned that in for the second miracle for the Sainthood of Pope John Paul II !!

He has a great sense of humor.   A merry heart doeth good like a medicine!

Yay GOD!

the week leading up to Chemo #6

Here I sit as I contemplate my last treatment, for this round at least!  What is next?  This has sure been a year I would not have chosen.  Not even for my worst enemy.

I don't look forward to Monday, sitting there is not too bad.  But the days that follow suck.  I know the side effects are temporary, I hope.  But I still get depressed.  I think that I get depressed because I let my thoughts go to the fear place.  That I will die a long, drawn out, painful cancer death.  That's what I envision.  And maybe that is what will happen, eventually.

Today I listened to Max Lucado's Fearless book.  He pointed out that God wants us to talk to Him about whatever we are afraid of.  Be very honest.  He knows anyway.  Mine would be, God I am scared, I don't want to die.  Take this cancer from me.  Kill it.  But Your will is what I really want.  Max reminded me that this is how Jesus prayed before the crucifixion.  Jesus was not so anxious to die either.  He begged to be relieved from it.  But, he knew it was the Father's plan.  It also exemplifies that Jesus understands what I feel. He did it too.

I am self conscious about my lack of hair.  Well if Oprah is brave enough to let herself been seen in public without makeup and a fancy hair-do then surely little ole' me can open myself up too.

Without makeup, as if you had to be told!

With makeup, a little better!

Top it all off!

questions asked and answered--chemo #5

I have felt stronger this past two weeks. I do end up paying for it when I finally get home.  So far my blood counts have been ok.  Not so this time.  White Blood cells have fallen to the level that now I have to return to the office Thurs and Fri this week for possible neupogen shot.  Neuopgen stimulates WBC growth in the bone marrow.  Will have to do it next week as well.

I asked Dr Crane what his definition of remission was.  When the cancer is not active.  Not that the tumors are gone, but not active.  He would say I am in remission now since tumors are responding and tumor markers are down.  We will continue the full treatment plan.  Six treatments are all that are indicated.

I asked what if the tumors are gone.  We scan at the end of treatment, then 3 months later.  What if the cancer does return.  Remember Dr Crane fully admits he is not God.  He says the next steps would depend on when the cancer returns.  It will return. This is not a primary site.  I had that already in June 2009.  Now that cancer has traveled (metastasized), it will return.  The only way it will not return is if we kill every cell.  The odds are not on our side given what has already happened.

If it returns before 6 months we would not repeat this treatment.  If it returns after 6 months we could repeat the same treatment we have been doing.  Question-does that mean if it comes back within 6 months there is nothing you can do for me?  No, says Dr Crane, I have lots of options for you.  sigh of relief!

I was hoping for extinction of this cancer.  Telling God to kill it.  He is my only hope,  Funny how something like this really drives that home.


Now before everyone starts to lecture me about God and His Power, I am already down with that.  I know I am in His great big Hands. It is His Call.  I find peace there.

As a nurse I have heard advice given to heart patients for years.  You better do this,  You better do that or you will die.

I used to think that would be motivation enough.  You  know if I don't eat right and exercise, take all these drugs, etc I would die.  So if that is not enough to motivate you perhaps nothing will.

When I was first diagnosed with metastasis someone encouraged me to charge up my credit cards(they obviously don't know Dave Ramsey!), and travel anywhere I want, do anything I want.

In reality, I have done pretty much what I wanted to do.  I don't have a bucket list.  Guess I kept my bucket maybe 1/3 empty.  There is one place I really want to go that I have not been and that place is in the plan if God allows me.  Guess that is not so bad a way to live.

I do tend to forget that I am not the only one going through this.  Yeah I do get the lead in this production.  But there are more players here.  David, Michelle, Bill, Haley, Nick, Blake, Dustin, Jess, Mom, Dad, Donna, David, Lori and their respective families.  And not to forget Dennis, Daryl, Dan, Denise and their families too.  And not to forget Fresh Winds.  I do not want it to always be about me when we get together to practice and Dan reminded me that they were dealing with this too. 

Dustin met the holistic oncologist and asked him what the family could do to help me.  Dr Sakko said "Community".  The people around me.  They are the ones who give energy.  So forgive me if I lean on you or pull from you.  Just continue to be there to provide a soft place to land.  I know you will.

My prayer is of course for complete healing.  I will continue to move toward a more healthy lifestyle.  No sense in making it harder for God you know.  If complete healing does not come, then my prayer is that God will make it easy and keep His loving arms all around me, comfort me and slide me right into the place He has prepared for me, and all who know Him.

continue to be my rock all of you.  I love you all so much, diane #1

ps: Oh and don't forget the "purple" ladies of my Awaited choir from Crossroads.

To everyone who reads this, please check out this event on Facebook. Save the date if you can! Thanks so much for your prayer and support for my mother and our family!

Save the Date Benefit for David and Diane Orner

Dustin

rambling thoughts

fresh winds practicing tonight as usual.  brenda singing "for every blessing", us "that's why I praise You"......

I think back over this week.  I felt really good monday which caused me to do too much.  fatigue builds over the days.  my mind goes to the "dark" place.  I get scared.  I don't want to die.  people say "you are so strong".  yeah but strong people die too.  I don't want to miss anything.  I never want to be left out.

my thoughts wander, go down, then up but not too far up.  I tell myself you have no choice, what is going to happen will happen whether you want it to or not. this is not your call.  get over it, you know the drill.

back to tonight, for every blessing, that's why I praise You.........I realized something......If God takes me now, I have so many blessings, He has done enough.......married to david for almost 40 years, michelle and bill, haley, nick, blake, dustin and jess.....mom, dad, donna, david, lori......fresh winds (cannot name you all, God gathered us up from all directions just for me you know)......the outpouring of love from so many, you know who you are (I don't even know who all of you are)....support and love I have never known before.......upon returning home tonight dustin handed me a cd he recorded today of a song he had written about his journey dealing with my cancer diagnosis.......so awesome...

yep, if He takes me now I have been blessed enough.......

by popular demand.....................

CT results:

Tumors in lungs are 2/3's smaller

Tumor in retro-peritoneal nodes 1/3 smaller

NO NEW SITES SEEN!

GOD VIA THE "POISON" IS WORKING!!!!!!!!!!!

YA GOD!

better post before david does!

I almost had to take david's blackberry away.

Had tumor markers drawn before my treatment today.  the results were back before I left. (david was stuck at work so I was waiting for him to come get me) another example of God's sense of humor, coincidence, probably not, maybe, does it really matter?

anyway, result before first chemo was 50.  now------24!

according to doc that is reflective of the "activity" of the cancer.  the scans that I will have in the next couple of weeks will be the "definitive" proof.

this is the first positive news we have had since recurrence diagnosis on jan 4, 2011.

now dave asked was this the result of the supplements, chemo or what?  I said well we did have prayers going up.  so it could be one of them, a combination of them or all of them.  personally, I don't really care.

but as jeremiah 29:11 says "I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for". the message

random thoughts-if you are going to judge me or preach at me you should pass on this one!

It seem I am not in a good place right now.  This is the week I should feel best.  At least physically I feel better than last week.  Inside me, not so much.  Sadness overwhelms me.  I look around and all I can think of is that I have CANCER.  I want everyone to know.  But what can they do.  What can they say.  The answer is nothing.  I want people to feel sorry for me.  Why else would I want everyone to know.  But that is of no value.  No one benefits from that, especially me.

My pastor Brian said this past Sunday about suffering that when we are going through it  we just need someone to come along side us, hurt with us.  Not quote scripture.  Someone to understand where we are.  I thought I had been through suffering before.  And maybe there is more to come.  But this sure bites. 

I manage to be upbeat when around people for the most part.  But when alone, with my thoughts....I get frustrated very easily.  Fidgety.  Overwhelmed.  Sad.  Angry.  Why me, what did I do to piss God off. 

I must say I have never experienced so much love and support in my life.  It just blows me away.

Then to top it all off I went to my holistic oncologist today.  He really pushed me on the whole food and exercise thing.  The more he reads about the danger of mid-section weight the more concerned he gets.  The whole anti-inflammatory and insulin resistance process.  He pressed me on the exercise thing.  I am not in "condition".  Ya think?  If only I could afford to not work I could do all that.  Not likely to happen in my lifetime.  He says I need to clear the "chatter" in my mind.  Somehow relaxation and stress management need to be addressed too.  Really did not come away encouraged from that appointment today.  I always thought that if they told me I was going to die unless I changed my diet then I would certainly do.  I am finding that you REALLY don't know what you would do in a given situation until you have to do it.  There are some who add their input and that does not set well either.

My "hair" is starting to bother me.  Hats bother me.  I certainly don't want to scare people and go without either. I am too self conscious anyway. 

Then Last Wednesday at Crossroads.  It was about getting the joy back in our salvation.  Last Wednesday is one of the great things about Crossroads.  So encouraging.  I want my life to be about the joy of my salvation.  I was encouraged by the music.  Songs about God and all He is.  I leave there crying.  Told someone I would have to stop going 'cause I cry all the time.

I am learning things that I was not taught earlier in my life.  Things like God is not threatened by our thoughts or challenges.  He wants us to be honest with Him and pour our souls out to Him even when it is not pretty or politically correct.  Being politically correct has never been my strong suit. 

I don't know what all I need to ask God for.  I don't know what I need.  I just lay myself at His feet and say do Your thing.  I really got nothin' else.

nite owl

yeah, that's me. ever since I was a little girl my MO was to stay up all night.  the only reason I get up early is for work.  like now, I need to go to sleep so I can get up for work.  my natural urge is to stay up.  My eyes are so heavy.  talk about addiction.  this facebook stuff sucks you in.  I so enjoy keeping up with everyone.

I feel better each day. that's good.  I don't want to miss a thing.  so much for my rambling.

Deb

Thank you Debbie for the excellent food for tonight. It was delicious. And we have more leftovers for later. I appreciate your sacrifice and commitment to love Diane and shower us with your gifts and talents. God bless you and your family.

they said it would get worse each time....

Yep, they were right.  I thought I would at least be able to work a half day today then go to Fresh Winds practice.  Based on last time that's what I should have been able to do.  Oh not so.  Sorry FW I know it was not the same without good old #1.

Fatigue, neuropathy, muscle/bone pain.  Whew, just taking a shower was exhausting.  At least I got one today.  Oh well, I will expect the week of treatment to be bad, the next week better, then the third week good.  Guess that's why they give you 3 weeks to recover.  Percocet rules.

It's a good thing David bought that big flat screen HDTV last year.  I have totally taken it over.  Another good thing he also bought a smaller flat screen HDTV for the bedroom.  Yep, I let him take that one.

chemo #2

today the doc was going to adjust the dose since the fatigue gets worse with each treatment.  I said don't do it.  I would rather feel bad and get more meds to the "poison" so we can get this &$!+.... so he said we would see how I do with the same dose as last time. Kelly came a watched movies with me today.  David went back to work for a while.  Nice to spend time with Kelly.  Had not talked to her for a while.

I figured out some advantages for not having my own hair:

• saves money on hair dresser appts.  will miss the great conversation, Jan
• also save on hair color supply
• waking in the wind the hair does not blow in my mouth
• when leaning over the sink to brush my teeth nothing gets in my way
• no eating hair with food
• David can have the hair dryer all to himself, all thirty seconds it takes him the dry the "strip" around the bottom of his head
• if my head get hot I can just pull off my hat or wig
• when it grows back I know that I look good in short spiky hair, since I used to have hair almost that short
• it should shorten my preparation time significantly
• I'm sure there are more, and I will come up with them as time passes, feel free to chime in.

went to whole foods-depressed in there

then went to bed bath and beyond-better in there

then to walmart-always great there

better get some shut eye. will try to go for staff meeting in am.  based on last time I should be ok to do that.

If you are squeamish, don't read!

It is done.  I wanted to leave it in as long as I could but Sat I could not even style it because it was coming out by the comb and brush fulls.  Poor David has been cleaning hair for a while.  It was time.  Dustin was more than up for the task!  He had experience buzzing heads at college!

We were at Michelle's for the big game.  My "hair" started bothering me so I replaced it with a hat.  I hung my hair on a 2 liter bottle since I did not have my proper stand.  Haley says are you going to let us see.  I will be this way for a while so am I gonna be one of those folks that is so veign that even my family can't see.  Nick was a little reserved.  I asked if it bothered him and he was worried about me.  I shared with them that my friend who had lost her hair reminded me that when my hair falls out that means the chemo is also getting the cancer too.  They were pleased with that.  Blake noticed the wig propped up on a 2liter bottle and said it was creepy.  It made him think it was me......that Blake is so funny.

last week.

saturday just before the deed.  David just could not keep cleaning hair

saturday just before the deed.  I could not style because my hair was coming out with each pass of the brush and comb

saturday just before the deed

after the buzz!  notice the pictures behind me, they were drawn during the 70's for Michelle and me!

right profile

left profile

new look

my favorite team

And so it is!

fresh winds therapy

thursday was the next installment of my "fresh winds" therapy prescribed by my oncologist.  be with people, don't isolate yourself.  another part of my treatment plan that is so easy for me.  I get fed, energized, uplifted.  I get discouraged.  singing God's praises lifts me up.  especially with my best friends. there's just something about God's word in the form of music that just hits your soul.  king david got it right, you know?  even king saul knew it and david was his "therapy".  I will get there for my "therapy" if they have to drag me in on a sheet let down through the roof.  oh wait, that was another time and place.  anyway, my holistic oncologist really gets it!

I know dustin will buzz my head, I just have to give him the word!

my dna

I was hoping that maybe it would not happen.  that maybe it would just thin out.  but no, with each passing day it gets worse.  my dna is flying all over the hospital.  I run my fingers through my hair and it just comes out.  if you need tie me to any crime, you're still out of luck.  I am so squeaky clean it's boring.  I was always to afraid to do much of anything.  I'm getting over that!

I thought the kids might want to be included in this whole experience.  I asked them if they wanted to cut my hair.  Blake said he would just mess it up 'cause that is what he did when he was little.  that's right Blake.  we are just going to buzz it.  funny thing is, Michelle is gun shy.  wants me to wait until it falls out on its own.  it will be just a few strands very soon!

my take....

it's about time you heard from me.

the holistic oncologist:  he is a very kind and caring man.  we both liked him a lot.  he talked about creating an environment that is toxic to the cancer. fruits, veggies, organic as much as possible, low glycemic foods, you gotta get rid of the weight around your middle, no processed food, supplements, accupuncture, massages every week.  wait a minute, massages every week?  now you're talking.  I can do that. 

while he was giving us his thoughts I looked at David and said you know, you have heart disease and stroke.  the doc said yea, this is for you too. 

I went to Kroger and started looking through the natural food section.  my daughter already eats soy in place of dairy.  they have some acceptable stuff there.  tried the ezekiel brand of bread.  sprouted grain bread.  really not bad.  crunchy.  the thing I noticed most is, man this is expensive.  oh well, don't they say you get what you pay for?

main thing, this is not a diet, it's a lifestyle.  gradual lifestyle change.  there is no way to do it all at once.  well at least I can do the massages right away! 

what did David hear?  we need to be transitioned in a month when we see him again.  we were in the same room right?  hmmmm...............

thank you for the "purple ladies" of CR who continue to amaze me with you many kind expressions. Prayers for Diane, food to give us nourishment and attention that tells us we matter.
thanks to God for replacing fear with faith and doubt with confidence. these are challenging days for diane, yet filled with love and peace. yes this is a peace beyond human understanding, a peace that provides calmness in the midst of a storm, yes a "cleft in the rock" if you will, where we are "under the shadow of the almighty". miracles happen everyday. see the list above.

"stuff day"

Hi,

Let me add me thanks for your friendship and support for my lady "di". We went to her favorite spot the Rave and watched movies last night. Diane is so encouraged by your wonderful expressions of love. Truely Diane is blessed by you. I love you guys. Thank you for loving Diane.

stuff day!

There is a tradition at Christ Hospital known as "stuff day".  You may know it as "carry in dinner" or something like that.  It's where everyone brings in their favorite food and everyone "stuffs" their face all day.  Usually this happens in connection with a celebration of some kind.  A new baby, new employee, old employee moving on, some worthy accomplishment. 

Yesterday my work colleagues had a "stuff day" for me.  They wanted to support me in my fight against this poison called cancer that has decided to give me the fight of my life.  They are joining me in my fight, lifting me up, praying for me, holding my hands up like Aaron did for Moses when the battle was raging and depended on Moses' hands being held high to win the battle. Now that might seem a bit dramatic but to me, that's what it is.

I am deeply humbled by the love shown me yesterday by my colleagues.  Thank you so much Christ Hospital Cath Lab / Angio / CVRU and ANYONE else who took part.  I don't know who everyone is, but you know who you are.  Both near and far.  There are no words that can express my love and gratitude to you.

I am holding out for a miracle here.  So when that happens we will party all over again.  My prayer is that God will richly bless all of you.

Love, diane

Today's Events

Diane,

I am so proud to be your husband. Today we received words of life from Dr. John Sacco. The lifestyle of eating, suppliments and exercise gives us power to overcome cancer and chemo. Today is the first day I have sensed that there is something we can do to make life better and longer. Tonite at Last Wednesday at CR. I committed your spirit, life and my control into God's Hands. God has and will always be in charge and trusted. Our life together is a testimony of that fact. I thank God for you everyday. I love you so much. I trust God to help me to be a competent and committed caregiver. TEAM ORNER will defeat Team Cancer.

today was good and not so good

I realized something today.  This fatigue is too much for me.  I try to go to work but I am so tired.  The slightest task wears me out and I have to wait until it passes.  Things that I took for granted just wear me out.  I want to work.  I need to work.  But I am so worn out.

The good part is I had a bone scan and head CT today.  You will be pleased to know that they did find a brain. It is now documented.  But there is nothing there,  No visible sign of cancer.  That's a relief.

Then there was the bone scan.  I now have a diagnosis of arthritis.  Shoulders, knees and feet.  I have some regenerative changes in my lower back.  Ok, I'm getting old,  And I hope to get ALOT older!  Actual result of bone scan - no evidence of cancer.  There was one speck that the doc did not think was cancer because when compared to the CT of that area there was not a corresponding spot.  He said would tell me if he saw anything.

I should be thrilled right?  I just cannot get away from the "speck"!  Negatives have always been easier for me to believe.

I really am not feeling encouraged today. Fear has overwhelmed me yet again.  I know there is a multitude of folks praying for me..  My arms are sagging and need held up.

So you see, today was good and bad for me.  Good test results and depression all in one day.  Talk about an oxymoron!

love to hear from you

When I set up this blog I wanted everyone to be able to see/comment even if you do not have google account.  Although the google account is free I know not everyone wants one.  So, If you do comment or follow would you mind identifying yourself?  I need and love the encouragement.  Sometimes just initials or first names aren't enough for me to tell who you are.  And for sure David, Michelle, and Dustin will want to know who you are too.  I have so many many many friends and followers LOL.  Well you know what I mean!  If you would like to not reveal  yourself publicly you could send a message to us.......thanks, love you all.

david, michelle and dustin

I have added David, Michelle and Dustin as authors so they can post too.  They are going through this right along with me.....I love them all beyond words.

don't worry

Before you think I am going to bore you with every ache and pain, don't worry, I won't.  But, there's always a but isn't there, today I feel like crap. Aches and pains.  Tired.  Depressed.  This just cannot be happening to me!  My mom's grandma lived to be 97.  That was my plan.  I picture this "poison" scattered all over inside me.  I just can't believe it.  I don't need sermons tho', just understanding.  I know this is temporary.  I remember the oncologist saying this will shorten my life.  I really don't like that.  I am depending on y'all to carry me....not doing that so good today.........

I told you this might be too much for you!

Wig Purchased

Monday my sister in law Carol took me to look at wigs.  Carol is very encouraging and is so positive.   We agreed on one that we thought looked best.  The lady measured my head and to her amazement I am the same size as the mannequin heads upon which all the wigs are mounted for display.  As luck would have it I did not have to order one.  So, you guessed it, I bought it.  It needed a little bang adjustment and I picked it up today.  Of course Humana only pays $400 lifetime for wigs.  Not even close to the cost but I am so vain I just could not bring myself to get one of the cheaper ones.  Insurance is not very friendly sometimes. 

Anyway, here it is.  What do you think?

first chemo treatment

Yesterday was my first treatment.  One thing for sure, don't go with a "hurry up" attitude.  You will just be frustrated.  Pick your chair, making sure there is a plug for my laptop, sit and wait.  The nurses are nice.  Some sit at the desk and you wonder what they are doing because you really don't see much movement. 

Just let me say that although I am new at this the port-a-cath is the way to go.  A little lidocaine cream before leaving home and there is really not much pain at all.  If you don't know what that is it is a contraption placed just under the skin that allows administration of IV medication and drawing blood without sticking you all over trying to do the same thing.  After while you will have no veins to stick.  Awesome.

The drugs begin.  Steroids and Benedryl for potential allergic reaction.  Zantac for your stomach.  And a three day anti-nausea drug. 

Then the Taxol.  One of the drugs to attack the cancer.  If there is a plus side to this the drug is in 80% alcohol.  For every 100mg you get 1oz 80 proof liquor.  My dose is 348mg.  That is 3.5oz of 80 proof liquor IV.  Mercy me. 

Then the Carboplatin.  Another cancer attacking drug.  This one has no specialness during the infusion.  Guess I can't have it all.

David brought me Skyline for lunch.  Treatment done.  Go home.

I wanted to go to McAllister's with Michelle, her boys and Bill for supper.  David tries to talk me out of it.  Doctor said to do whatever I felt like doing.  Don't dwell on the cancer.  Live my life.  I went. 

You see, I had not seen the boys since they were told about the cancer.  Now this is scary enough for us as adults but my precious grand kids must be so scared and they don't know how to express it.  We needed to hug, to ease their fears.  I need to be normal.  Quiet Joe!

With the "steroid rush" I did not sleep last night.  I created this blog.  The nurse said I would probably clean house but you all know me better than that.  If you don't just keep up with this blog and you will. 

The Beginning

On June 8, 2009 I was notified by my gynecologist that the biopsy taken the previous week was indeed Endometrial Cancer.  I was already scheduled for a CT scan to see if the cancer had spread, the surgeon was notified and I was to see her, and I was to have surgery on Friday June 12, 2009 @ 1pm.

CT scan was negative for metastasis so I felt good about that.  My husband David and I met the surgeon, Marcia Bowling a gynecologic oncologist.  She was very confident.  She explained the surgery and we were as ready as we could be.

June 12, 2009 a hysterectomy with bilateral salpingo-oopherectomy was performed.  Multiple lymph nodes and washing were sampled.  When the pathology report came back the next week the staging was early and since no mets had been found we were confident everything was fine.  Radiation to the next likely spot, the vagina, was done to lessen the chance of recurrence from 15 to 3-4%.  You see the tumor was near the vasculature so the Radiation was administered vaginally (second oncologist joins my case).

Checks were done faithfully every three months and all was well.  During the summer of 2010 I complained of not having my stamina back.  I was referred to my primary care for work-up.  Of course nothing was found.  They always want to say the since I was old, fat, and don't exercise is the reason for just about anything,

In Dec 2010 during my regular check up I described a couple of vague abdominal symptoms that just could not be explained away.  So we got a CT and Chest Xray.  Sure enough, there it was.

On January 4, 2011 I found out that the Cancer had metastasized to my retroperitoneal lymph nodes and nodules were scattered bilaterally throughout my lungs.  Old, fat, and not exercising huh?  Seriously?

I saw yet another oncologist and the process was initiated immediately to begin chemo.  A biopsy performed on January 7th confirmed the diagnosis.  Jan 13th I had a port-a-cath surgically implanted in my upper left shoulder for easy access to administer the chemo and draw blood.  Yesterday, Jan 18th I had my first chemo treatment.

You see, this cancer is aggressive.  If I don't have chemo, although the doctor absolutely admits that he cannot know when a person will die, I only have months.  With chemo there is a 60% chance for remission.

I have wondered how I would react if I ever received news like this.  I was feeling blessed and grateful to have gotten mine removed with so little chance of recurrence when others weren't so fortunate.

When a friend who was diagnosed with cancer the same year as I died just a few days ago I thought how does God choose who gets to live or die.  The very next day I found out mine had spread.

So here is my response to this news:  God is in charge and He knows what He is doing. I have always trusted God with my life.  We have followed where He was leading, at least to the best of our discernment.  He has ALWAYS taken care of us and our family.  I love Him so much and my love grows as I get older and see more of Him.

 I don't want to die.  I have a lot to do yet.  Dustin will get married.  Haley will get married.  Nick and Blake will some day for that matter.  Michelle and Bill need me to be their ever so present mother/mother-in-law for many years yet.  Then Dustin will have kids etc.  Mom and Dad are still here and although I don't do that much for them living the farthest away, I do what I can.  David needs me I think, at least to take care of his medical issues.  That's one of the things I can do well.  lol.

Singing in Fresh Winds, they don't need me, but I sure do need them.  They cannot know just how precious they are to me.  Words do not do it justice.  I mean that about each and every member.

Then there's our friends in the bt.  Nothing needs to be said here.  What said in bt........!

So what's next for me?  I will do what I can to fight this "poison" in me.  God will take me when He is ready and not before.  It is really left up to Him.  He does know that I want to stay as long as I can.

I know I will have various kinds of days and moods, both ups and downs.  God knows that too.  He has been so patient with me over these past 57 years.  I have grown to know that He loves me and does not condemn me.  He created me and has changed me to be more like he wants me to be.  I am not a finished product yet.  I falter and fail more times that I would like.  But I have also grown in so many ways too.  The good thing is that there is nothing I do that gets me into heaven.  Only the grace of God by His Son dying on the cross accomplishes that.  He did it for me and you.

I want to live my life to the fullest for as long as I have left.  I really don't have a bucket list since I do pretty much what I want to now.  I want more time.  I want to be around people who I love and love me.  That's really what I want to do.

I have a lot of singing, laughing, and aggravating doctors left to do.  And, don't forget the RAVE!