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Heartbroken in Michigan to OH HAPPY DAY!

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I just told my wife the bad news... And she started crying over the phone.

I've been riding a remission now for six months.  I know, six months is hardly that long of a time, but for me it was the longest stretch of <1.0 CEA results and clear scans. Ever since my liver surgeery on December 5th I have been clear.

And we were all confident that today would be another <1.0 CEA. My wife was so confident that this is the first doctor visit she decided to skip (e.g. she went to work instead of going with me to chemo). My fifteen-year-old son went with me this time (e.g. instead of sleeping in now that he is out of school).

My doctor was so confident that he suggested skipping this Erbitux treatment, in hopes that my face would clear up for my daughter's upcoming wedding. Yes, my daughter is getting married on July 4th. [I really don't have time to deal with this right now.]

So my son and I came back from the hospital a lot sooner than planned. And since I didn't have a treatement I decided to jump on my computer and start working. Then my phone rang a little bit ago. My doctor's all too familiar words "I've got bad news."

My CEA was 8.0.  Just two weeks ago it was <1.

My doctor explained - "It could be a false read." "We need to retest. And we need to speed up the scan. And add an MRI in addition to a CT Scan."  I was going to have a scan at the end of July but I guess it might be next week instead.

And I'm devistated. I am really sad. It was going so good. And we are all looking forard to Anna's wedding.

Sometimes I feel like getting hit by a bus would be a lot easier to deal with. Why does my family and I have to suffer through this agonizing battle with cancer?

I know there is not an answer. And I know that happiness is a choice. And somehow, someway, I have to choose to be happy. To be thankful for now. To be joyful for my daughter, wife, family, friends.

I hope the tear track on my face will fade away...

Phil64

 

**

 

Update:

This morning started out gloomy. However, the sun is shining brightly for us now. I received updates from my doctor, from Friday’s tests.

The Thursday 6/25 8.0 CEA test was NOT confirmed. The Friday 6/26 retake came in as <1.0. This was the result we have received for some time now. This is the result that indicates NO CANCER. Furthermore the Scans are showing clear as well (e.g. no cancer). We are still waiting for the CT of the abdomen but the MRI and CT of Chest are showing ALL CLEAR. And my doctor expects that the CT of the abdomen will show clear as well, given these other results.

Who knows what the 8.0 CEA was? Maybe it was just a glitch? Maybe it was supposed to be 0.8 instead of 8.0? Whatever it was it sure sent us on an emotional rollercoaster ride. And it sure reminded me of how lucky I am to be NED (No Evidence of Disease). The remission continues! Praise the Lord, Halleluiah!

And THANK YOU for your many Prayers. You all are awesome prayer warriors. And I am so thankful to have you all praying with me.

Now we are looking forward to the Anna’s wedding and ready to truly celebrate! Thanks be to God!

Love and Light to each of you on this beautiful Monday!

Sincerely,

Philip

jen2012
Posts: 1607
Joined: Aug 2012

Oh Phil, I'm crying with you guys.  This just sucks.  Cancer is so horrible...I hate it.  I don't understand why life is this way.

lets hope for a lab error.  they do happen.

Hugs and prayers.  Please keep us updated.

Trubrit's picture
Trubrit
Posts: 5118
Joined: Jan 2013

My heart just sank into my toes. I feel sick to my stomach, hearing your news. 

last year, when my CEA jumped, I prayed so hard that is was false, I almost convinced myself, and then it was even harder to find out that it wasn't. 

I want to tell you it could be a false positive, but I don't want you to even go there. If you prepare for what is ahead, and then find out that it was read wrong, then how wonderful that will be. I don't want you to hurt if it comes back high again. 

Why oh why? So many good men and women. So righteous, so giving. It is unfair. I don't care what people say. IT IS UNFAIR. 

You know you have my prayers and thoughts. 

Cyber hugs, my friend. 

Sue - Trubrit

janderson1964
Posts: 2215
Joined: Oct 2011

I am so sorry to hear this Phil.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

MRI, and CT scheduled for tomorrow. I guess we'll find out soon enough what we're dealing with.

 

Trubrit's picture
Trubrit
Posts: 5118
Joined: Jan 2013

I am glad they have got you right in. 

Please keep us posted. 

Sue - Trubrit

janderson1964
Posts: 2215
Joined: Oct 2011

I agree with Sue. I am glad you and your doctors are on top of it.

danker
Posts: 1233
Joined: Apr 2012

Hope they all come back the way you want. Good luck!

Lovekitties's picture
Lovekitties
Posts: 3341
Joined: Jan 2010

I am so sorry that you are now in another of the lows of the cancer battle.

Certainly I pray that the scans come back clear and that the rise in CEA was something else or a false rise.

The emotional roller coaster we ride is one of the worst side effects, particularly as it impacts our loved ones too.

Take care my friend and know that we are always here to support you as we can.

Hugs,

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I am just so sorry.  I really hope it turns out to be a glitch.  I have seen that happen before.

And I hope you can go to your daughter's wedding, and put all of this awful crap behind you for that special day.  I am so glad that you are here to celebrate with her.  That's a very special moment in the life of a family.

Keep us posted.  We will all be worrying right along with you until you find out more.

Big hugs~AA

Cathleen Mary
Posts: 827
Joined: May 2011

Oh, Phil! I am so sorry that worry has invaded this happy time for your family. Prayers for tomorrow.

CM

wolfen's picture
wolfen
Posts: 1324
Joined: Apr 2009

Phil,

Just feel so sad for you that cancer won't leave you alone. I'm sure each of us here would like to learn the "why" of it. Many doctors suggest "why" to their patients, but so many patients don't fit the mold. I know each time after NED that it shows back up is so deflating. JBG had an 18 month break one time and then it reared it's ugly head again.

"Just breathe Phil, breathe" is what JBG would say. The wedding will be beautiful and I offer congrats to the bride and groom.

Hoping it is a false result. If not, somehow we turn to the next page.

Luv,

Wolfen

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Thank you all for your sympathy and support. I appreciatge that you all have dealt with my situation and then some. And I am humbled by your continued presence on this forum and your kind and supportive words that you all share. I know that JBG went through a tough fight. And so many others on this board have struggled with this ugly disease. I surely don't know the answer to why either. 

Breathe. Thank you creator for today. For it will be a joyous day. And I will choose to celebrate with my loved ones today, tomorrow, and especially on July 4th.

Bless you all.

Phil

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so sorry! Praying that things will be better than you think!

 

*hugs*

Gail

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Go here and read this please:

http://csn.cancer.org/node/262501

 

Best wishes,

John

 

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

It is a roller coaster, isn't it? Since my diagnoses I've never been sadder or happier. This cancer is like a heavyweight boxing match that keeps switching momentum. Let's hope it's nothing or something caught very early and can be swiftly dealt with. No matter what you have a beautiful wedding coming up and I'll bet you'll be bawling tears of joy, that'll make up a little for the tears of sadness now. And that dance or toast with your daughter, well I'm telling you now there won't be a dry eye in the house. Keep us posted, enjoy the heck out of the wedding and as if you didn't know, F$&CK cancer.

Hang in there my friend,

Easyflip/Richard

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Fingers crossed and all the rest that the scans come back perfect for you and that you have the best 4th of July for many reasons.

 

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hey Phil, I'm still voting for screwy bloodwork.  I wish that scan results were same day.  Thinking of you today.  Just one more day. And I'm with  you on the why is this happening.  Life used to be so simple before cancer.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Well, now it's the waiting part. I had the scans done on Friday afternoon. Wait Saturday, Wait Sunday, Wait Monday (okay, it's only 7:30am Monday). But I don't know when I'll get the call.

Trubrit's picture
Trubrit
Posts: 5118
Joined: Jan 2013

We are waiting with you, Phil. 

I hope it is today. I know that they can read scans quickly, expidite them, but sometimes I think, let them take their time, get it right. Its hard waiting, but lets hope they can go over every inch of it at leisure (so to speak) and then get back to you. 

Praying.

Sue - Trubrit

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Sue,

I emailed my doctor. Here was his reply this morning

Repeat CEA less than one!!!!  Very good.  CT of chest very good, CT of abdomen and MRI not up yet

This emotional rollercoaster ride is crazy. I know I need to wait for the MRI and abdomen results as those were the most important. But the feeling that the 8.0 CEA may have been nothing but a glitch is unbelievable!!!

Phil

 

 

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

That's really great Phil - Congrats!!  Smiles all around!!  Smile

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Your July 4th is the best ever now :)

 

great to hear

wts's picture
wts
Posts: 40
Joined: Jun 2012

Great News!!!!

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

MRI is clear. Still waiting on CT of Abdomen but expect that will be clear given MRI results.

Wow!!!!

We are so releived.

Love and Light to all today! It truly is a WONDERFUL day!

Phil

jen2012
Posts: 1607
Joined: Aug 2012

Oh thank God!   I am so happy to hear this.  I wonder if it was supposed to say .8 and someone just put that decimal in the wrong place.

 

ok, now tell us about wedding plans!

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

She was going to have a "small" wedding. Haha. That was the original plan. There are 175 confirmed guests (over 240 invited). It is at a country club on a beautiful lake in Michigan (Gull Lake Country Club). My wife and I worked on tying tags with royal blue ribbons onto 175 sparklers over the weekend.  We  also worked on the seating name tag tents, printing them all out and then fastening on blue, green, yellow, and pink hearts to indicate the attendee's meal choices. I think I'll be able to ask people "how did you enjoy your XXX?"  Substittutting their selected meal to make the question personalized. :-)

I also mowed (3 acres) and weed-wacked and raked (pull behind lawn sweeper) in prep for family coming over. My son and wife helped with that chore.  I also made a few chalk boards -- converting old pictures to chalk boards using chalk paint.  My wife plans to use for sings in the hall.  Right now my office is full of wedding stuff as well. A bird cage for her cards, decorations for the hall, vaces, candle holders, blah  blah blah. :-)

I still need to finish my "father of the bride" speech and clean my garage. But we are looking good for being ready.

Family from out of town starts arriving on Wednesday.  I expect to have about 25 people staying at our house over the weekend and many more staying in nearby hotels. The 25 includes my nephew who will be driving a very large motorhome (so they will actually be sleeping in their motorhome on our property).  We will have a crazy wonderful time!

Thank you all for your sympathy and support in the highs and lows of this cancer battle. I told my doctor that this is quite an emotional rollercoaster and he suggested I read a book. I love how quickly he uses email to communicate back with me and how personable he is. I am really lucky to have a wonderful doctor and hospital in UM Health Center (UMHC). I thought I would share this book with you all as well - here is what he passed onto me:

    Betsy DeParry  self-published a book “The Roller Coaster Chronicles” about her journey with cancer.

Light and Love to all of you today, on this beautiful day!

Phil

Blog: http://PScamihorn.Me

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm so happy to hear this. Enjoy the wedding and keep looking forward. next stop: grandbabies??? Sorry, I'm obsessed with my two little grandbabies. They certainly brighten our day when we're having a bad one!

I wish your daughter and her future husband a long, happy, loving and prosperous life together!

Lin

danker
Posts: 1233
Joined: Apr 2012

Grankids are great!  But wait til you reach my age and start having greatgrandchildren.  It is awesome!!Good luck to all!

DD3's picture
DD3
Posts: 134
Joined: May 2013

read through this whole thread.  Late to the party as usual.  Such awesome news Phil.  God is good.  God bless you and your family.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Now you can go enjoy that wedding!  Congratulations all around to you and your family!

danker
Posts: 1233
Joined: Apr 2012

While awaitng lab results, if we assume the best we don't experience the anxiety most of us go through!   Happy for you that you did get the results you wanted!

Trubrit's picture
Trubrit
Posts: 5118
Joined: Jan 2013

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janderson1964
Posts: 2215
Joined: Oct 2011

That is awesome Phil. What a relief.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

Hey Phil, I'm so sorry you had to go through these few days from hell. I wish you and your family a great wedding celebration and many many healthy and happy years.

Laz

Cathleen Mary
Posts: 827
Joined: May 2011

What a wedding gift!!!  Blessings Galore!!!

CM

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I had my fingers crossed  the news would be good.  Now you can  really enjoy your daughter's wedding without a gloomy cloud hanging over you.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

news! Enjoy those weddings!!

Richard/Easyflip

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

 

To hear your wonderful news. Now enjoy the weekend and have a most wonderful time at the wedding.

Winter Marie

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Happy happy news, now that you've been retested.  Hope your daughter's wedding was fantastic!

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