Heartbroken in Michigan to OH HAPPY DAY!

Phil64
Phil64 Member Posts: 838
edited June 2015 in Colorectal Cancer #1

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

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Oh Phil, I'm crying with you

    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
    Trubrit Member Posts: 5,623 Member
    Dear Phil

    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
    janderson1964 Member Posts: 2,215
    I am so sorry to hear this

    I am so sorry to hear this Phil.

  • Phil64
    Phil64 Member Posts: 838
    MRI, and CT scheduled for

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

     

  • Trubrit
    Trubrit Member Posts: 5,623 Member
    Phil64 said:

    MRI, and CT scheduled for

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

     

    Good!

    I am glad they have got you right in. 

    Please keep us posted. 

    Sue - Trubrit

  • janderson1964
    janderson1964 Member Posts: 2,215
    Phil64 said:

    MRI, and CT scheduled for

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

     

    I agree with Sue. I am glad

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

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Phil

    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
    annalexandria Member Posts: 2,571
    Oh Phil

    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

  • danker
    danker Member Posts: 1,276
    Phil64 said:

    MRI, and CT scheduled for

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

     

    Tests

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

  • Cathleen Mary
    Cathleen Mary Member Posts: 827

    Oh Phil

    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

    Oh, Phil! I am so sorry that

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

    CM

  • wolfen
    wolfen Member Posts: 1,324

    Oh, Phil! I am so sorry that

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

    CM

    So Saddened For You

    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

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Oh dear

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

     

    *hugs*

    Gail

  • Phil64
    Phil64 Member Posts: 838
    wolfen said:

    So Saddened For You

    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

    Thank you all for your

    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

  • John23
    John23 Member Posts: 2,122
    Phil.....

    Go here and read this please:

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

     

    Best wishes,

    John

     

  • Easyflip
    Easyflip Member Posts: 588
    Phil

    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
    NewHere Member Posts: 1,390 Member
    Thoughts With You

    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
    Helen321 Member Posts: 1,434 Member
    Hey Phil, I'm still voting

    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
    Phil64 Member Posts: 838
    Helen321 said:

    Hey Phil, I'm still voting

    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.

    Well, now it's the waiting

    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
    Trubrit Member Posts: 5,623 Member
    Phil64 said:

    Well, now it's the waiting

    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.

    Hopefully today

    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
    Phil64 Member Posts: 838
    Trubrit said:

    Hopefully today

    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

    Sue,
    I emailed my doctor.

    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